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Analysis of Local Culture in Primary School Education Curriculum in Banggai District

This study explores the diversity of local cultures in implementing the curriculum in elementary schools in Banggai District, an area rich in distinctive and diverse local cultures. To maintain the noble values of the Indonesian nation, this cultural diversity needs to be preserved and developed through education. One way to make this happen is through utilizing local culture in the curriculum structure, known as local content. This research uses a local cultural analysis approach in the development of the basic education curriculum, with the following stages: first, identification of the curriculum context, which includes an analysis of characteristics, potential, advantages, local wisdom, and regional needs/demands. Second, an analysis of local culture, which will be developed in the basic education curriculum, includes four clusters of local content covering socio-cultural-political, economic, environmental, and other local-specific dimensions. The results of the study indicate that several elementary schools in Banggai Regency have implemented local content subjects in accordance with Banggai Regent Regulation No. 56 of 2017 concerning Local Language Local Content Curriculum (Saluan & Balantak). Based on an analysis of the context and potential of local culture and aspects of basic education curriculum development, several local cultures can be developed, including developing tourist destinations, developing regional languages, developing regional skills and craft industries, and preserving regional arts and sports.

INTRODUCTION The formulation of national education goals in Law Number 20 of 2003 mostly discusses forming attitudes and values. Multicultural diversity (customs, culture, language, arts, local skills, etc.) in Indonesia serves as a basis for shaping and enriching these values for every individual in the country. On this ground, such diversity must be preserved and developed without taking out the noble values of the Indonesian nation through education. Introducing the students to the environmental, social, and cultural conditions enables them to understand the values and identity of Indonesian citizens in-depth. In the end, this process is expected to bolster the improvement of human resources and the student's cognitive, psychomotor, and affective skills. The government plays the integration of local culture into the national education curriculum through Ministerial Regulation (Permen) No. 79/2014 concerning the Local Content of the 2013 Curriculum. This regulation underscores the role of local content as teaching materials at various levels of education to educate students about local potential and characteristics. This relevance is closely related to research variables that discuss the development of local culture in the basic education curriculum. The enactment of Law of the Republic of Indonesia Number 32 of 2014 concerning Regional Government provides a new nuance in education management. Regional autonomy in the implementation of education is the embodiment of the law, which gives authority to the regional government to create education management that fulfills the needs and conditions of the region. With the authority, the regional government is expected to develop a local content curriculum as one of the compulsory subjects in every educational unit, especially primary school. As mentioned in Regulation of the Minister of Education and Culture Number 057 of 2014, "learning content and guideline of group B general subjects (art, culture, and craft and physical, sports, and health education) is national-scale subjects developed by the government and can be enriched with local content by the regional government and educational units." Banggai Regency is among the regions with distinctive and diverse local cultural characteristics. The people living here come from various tribes with different languages and customs. Generally, the indigenous people of the Banggai Regency come from the Banggai, Balantak, and Saluan tribes. Such diversity is shown in their daily activities, whose languages are Saluan and Balantak. The language the indigenous people use becomes one of the slogans sounded by the local government regarding cleanliness, namely "PINASA (Pia Na Sampah Ala, Pile Na Sampah Ala, Po Kitayo Sampah Alayo). In addition, such cultural diversity is linked with formal events, e.g., weddings and welcoming guests. Traditional clothes and music of the Banggai regency also color the events. Besides language and customs, the Tourism Office of Banggai Regency develops the local culture's potential through the handcrafts of the local community. The results of the preliminary observation performed in several primary schools in the city of Luwuk showed that most educational units, specifically primary schools in Banggai Regency, had incorporated local languages (Saluan and Balantak) into the local content curriculum. This aligns with the Regulation of Banggai Regent Number 56 of 2017 concerning the Curriculum of Local Content of Local Languages (Saluan and Balantak). According to a teacher in one of the primary schools in Luwuk, the primary school teachers taught the aforementioned local languages in songs, fairy tales, speeches, and the like. It is interpreted from the information that a small part of the local cultural context of Banggai regency has been implemented in basic education. However, it has not been carried out optimally, and the results have not been achieved by the learning objectives contained in the curriculum. For such reasons, a study was conducted to analyze deeply the local cultural content mentioned previously and the factors influencing the achievement of the curriculum and the learning objectives. The curriculum structure of primary/Islamic primary schools is under Ministerial Regulation Number 57 of 2014, consisting of Group A general subjects and Group B general subjects. Group A general subjects are curricular programs intending to develop students' attitudes, knowledge, and skill competencies to strengthen abilities in the life of the people, the nation, and the state. Group B general subjects are curricular programs aiming to develop students' attitudes, knowledge, and skill competencies regarding the environment in the social, cultural, and artistic fields. Utilizing local culture in the curriculum through the concept of local content aligns with BNSP guidelines. Local content develops competencies according to regional characteristics, includes elements of excellence, and is an independent subject. Each educational unit formulates Competency Standards and Basic Competencies, enabling the integration of local culture into the basic curriculum according to research variables and strengthening local content by the Education Unit Level Curriculum Operational Guidelines, which emphasize curriculum design responsive to local social and cultural realities. This is in line with the Explanation of Law Number 20 of 2003 concerning the National Education System, which underlines the role of local content as a student's understanding of the potential of the area where they live. Mulyasa's perspective (2009) describes the Local Content Curriculum as competency development that adapts to regional characteristics, including regional advantages determined by the education unit. Nonetheless, the goal is to link the needs of families and communities with national education goals. This perspective is by the research focus on developing local culture in the basic education curriculum. It is also important to note that this subject gives opportunities to the students to develop the skills considered necessary by the region. As a consequence, the local content subject must contain the characteristics of local culture, skills, and local values and discuss social and environmental issues, which can ultimately equip students with basic life skills. The local content curriculum is a set of plans according to the conditions and needs of the region and methods employed as a guideline in implementing the teaching and learning process. Specifically, the local content curriculum aims to a) introduce and familiarize students with their natural, social, and cultural environment; b) equip students with abilities, skills, and knowledge of their regions that are useful for themselves and the community in general; c) make students behave in harmony with the values or rules that apply in their regions, and preserve and develop the cultural values to support national development; d) make students aware of the environment and the problems and can help find solutions (Walisman, 2007: 94). A study conducted by Achmad Basari in 2014 entitled Penguatan Kurikulum Muatan Lokal dalam Pembelajaran di Sekolah Dasar concludes that the school's limitation in developing local content curriculum by regional potential in preparing students to have abilities is due to the following factors: lack of human resources to develop local content curriculum following regional potential; lack of understanding of teachers/school members in developing local content curriculum; the previous local content curriculum is considered adequately effective for students. Additionally, Rofiq, in his 2010 research, elaborated that the wealth of local culture can be used as a repertoire of local content in the educational unit-level curriculum. With the inclusion of local culture as local content, it has a dual function at once. First, a manifestation of demands for guidelines for developing school curriculum to eliminate the inferiority of religious education in educational arrangements. Second, an effort to eliminate culture shock is mostly experienced by the students, making them find compensation in other cultures, which often resist religious values. Drawing upon those previous studies, local culture can be integrated into the basic education curriculum, particularly in the local content subject. The purpose of this integration is to shape the characters/attitudes of the students in harmony with religious values and filter Western cultural values and the negative effects of globalization that increasingly affect the young generations' personalities. --- METHOD The following stages were carried out in analyzing local culture in the basic education curriculum. --- a. Curriculum context identification Identifying the curriculum context included the analysis of characteristics, potential, excellence, local wisdom, and needs/demands of the region. The method of identification and analysis was adjusted to the team's capability. b. Analysis of local culture to be developed in the basic education curriculum This kind of local content encompassed four clusters of local content serving as the interface between local culture (social, cultural, and political dimensions), entrepreneurship, pre-vocational (economic dimension), environmental education, and other local specialties (physical dimension). During this stage, there was also an analysis based on the following criteria: a) conformity with the development level of students; b) teachers' abilities and availability of educators; c) availability of facilities and infrastructure; d) no conflict with religions and nation's noble values; e) no social and security vulnerability; f) appropriateness related to the implementation in educational units; g) characteristics by the conditions and situation of the regions; h) local content needs analysis component (characteristics, potential, excellence, and needs/demands); i) developing basic competencies referring to the core competencies; j) compiling local content syllabus. The data came from community leaders/traditional leaders, school members (principals, teachers, and students), and cultural observers. For school members, this study took a sample of several schools that would become research subjects. Sample taking was based on the number of population (overall area of primary schools) or, in other words, all primary schools in Banggai Regency (340 schools) from the data on the kemdikbud.go.id. On the other hand, the accessible population was primary schools in the districts that lived by most indigenous people of Banggai Regency, i.e., Balantak and Saluan, and those in Luwuk as a comparison. Accordingly, primary schools becoming accessible to the population were those in Balantak District (with a majority of the Balantak Tribe), Kintom District (with a majority of the Saluan Tribe), and some schools in Luwuk, including in Luwuk District, Luwuk Utara District, and Luwuk Selatan District. Moreover, data collection techniques relied on observation, questionnaires, interviews, and documentation. The collected data from interviews, observation, and documentation were analyzed using a qualitative method. Meanwhile, the survey or questionnaire data were analyzed using descriptive statistical analysis. --- FINDINGS AND DISCUSSIONS --- Curriculum Context Identification Identifying the curriculum context according to the Regulation of the Minister of Education and Culture of the Republic of Indonesia Number 81 A of 2013 includes the analysis of characteristics, potential, excellence, local wisdom, and needs/demands of regions. Below is the description of the characteristics, potential, excellence, and needs of Banggai Regency viewed from geographical, natural resources, human resources, and cultural and historical potential a. Analysis of Local Content Curriculum Context Viewed from Geographical Potential Banggai Regency is an autonomous region in Central Sulawesi Province, with Luwuk as its capital city. The regency is located at coordinates between 122023' and 124020' East Longitude and 0030' and 2020' South Latitude. It has a land area of ± 9,672.70 km² or around 14.22% of the total area of Central Sulawesi Province and a sea area of ± 20,309.68 km² with a coastline of 613.25 km. Administratively, Banggai Regency is divided into 23 districts, 291 villages, and 46 sub-districts. The boundaries of Banggai Regency are as follows: 1) To the north, it borders the Tomini Bay. 2) To the east, it borders the Maluku Sea. 3) To the south, it borders the Banggai Kepulauan Regency and Banggai Laut Regency. 4) To the west, it borders the Tojo Una-una Regency, Morowali Regency, and Morowali Utara Regency. Regarding morphological conditions, Banggai Regency has natural diversity with mountains, rivers, and small islands. Villages in Banggai Regency are generally located at an altitude of less than 500 m above sea level, with the land surface dominated by the mainland and hills. Mountains surround the villages, yet less in number than the mainland and hills. Hills or mountains generally dominate villages 500-700 m above sea level. In contrast, villages located at an altitude of higher than 700 m above sea level are commonly dominated by mountains. This geographical potential has led us to the fact that the Banggai Regency is surrounded by neighboring regencies, i.e., Kepulauan, Banggai Laut, Morowali, Tojo Una-una, and Maluku Utara. This offers good opportunities for economic turnover, entrepreneurship, and tourism. The strategic location of the capital city of Banggai Regency also gives opportunities for information, communication, and transportation access between districts in the regency. With such natural diversity, Banggai has excellent potential to develop many natural resources, including agriculture/plantation, fishery, industry, and tourism. Nevertheless, some obstacles arise along the way, i.e., lack of cooperation between school members, especially the local content curriculum development team, with local government agencies regarding implementing the local potential in developing local content curriculum. The schools and the agencies are not far in the distance, not to mention the reliable communication and information access supported by local content potential across Banggai Regency. Hence, it is essential to have intensive communication and cooperation between school members through the local content curriculum development team and local government agencies concerning the utilization of Banggai Regency's potential in developing the curriculum mentioned earlier. --- b. Analysis of Local Content Curriculum Context Viewed from Natural Resources Potential Banggai Regency is rich in natural resources, such as agriculture, plantation, forestry, fishery and marine, mining, energy, and tourism. This natural wealth is a potential for developing the local content curriculum. Elaborated below is the detail of each natural resource. --- 1) Agriculture The agricultural sector still plays a significant role in determining the economy of Banggai Regency since farming is the primary source of livelihood for most residents. This is consistent with the data that approximately 93.98% of all villages/sub-districts in this regency are areas with potential for food crop agriculture, as displayed in the following table. --- 2) Plantation The commodity of plantation crops in Banggai Regency is quite strategic. It contributes to the region and creates jobs in its production activities (business and marketing), reducing the unemployment rate. The leading plantation production in this regency is oil palm plants, with a production of 70,719.55 tons. Crops that need improvement in planting and production are flat-leaved vanilla, producing 1.50 tons. --- 3) Plantation Banggai Regency is a large meat supply area in Central Sulawesi Province, as presented below. --- 4) Fishery and Marine Banggai Regency has a sea area of ± 20,309.68 km² and is located in Zone II of Tomini Bay and Zone III of Tolo Bay. The length of the coastline of Banggai Regency is ± 613.25 km. The sustainable potential of marine fisheries is ± 48,621.1 tons per year, consisting of pelagic fish with ± 39,387.9 tons/year and demersal fish with ± 9,239.2 tons/year. The regency also possesses an aquaculture area of ± 8,825 Ha. The cultivated types are tiger prawns (exports to the USA, the European Union, and Asia), Vannamei, and milkfish. A freshwater pond with an area of ± 260 Ha is for cultivating carp and Nile tilapia. For mariculture, the existing potential is ± 6.396 Ha, of which ± 78,800 m² has only been utilized for seaweed cultivation (±44,750 m²), cultivation of groupers/floating cages (± 430 m²), Scylla crabs (± 30,300 m²), and cultivation of pearls. Most areas in Banggai Regency are in the coastal area; therefore, they are dominated by coastal villages with a total of 131 villages (data before restructuring) with 14,067 fishing households. --- 5) Mining and Energy Banggai Regency has abundant mining potential, consisting of oil and gas and metal mineral mining materials, such as nickel and gold, non-metallic mineral mining materials, or non-metallic mineral materials (mine c). --- 6) Industry The industrial sector in Banggai Regency is engaged in large, small, and home industries. Given in the table below are the types of industries. --- 7) Tourism Banggai Regency owns a variety of natural tourist attractions and tourism potentials spread across several districts. However, all still needs improvement to make it a tourism icon of Banggai Regency that attracts local, domestic, national, and international tourists. Here is an overview of tourist attractions and tourism potentials of Banggai Regency. The above potential of natural resources indicates that Banggai Regency is rich in its various resources. Extensive agricultural/plantation land, great productivity, marine fisheries containing different types of fish and marine biota, a variety of types of community craft industries, and natural tourist attractions across districts in Banggai Regency provide comprehensive knowledge and information in the development of local content curriculum that bolsters the regional development of this regency. Nevertheless, the shortcoming of this curriculum is that the learning process in schools has not incorporated the information of such natural resource potential. It is essential to rearrange local content in the basic education curriculum by incorporating information related to natural resource potential in agriculture/plantation, fisheries, industry/crafts, and tourism. This process is expected to provide knowledge to the students in utilizing their natural resources, e.g., improving the use of agricultural/plantation land, marketing fishery products, entrepreneurship industry, and tourism promotion. --- c. Analysis of Local Content Curriculum Context Viewed from Human Resources Potential Human resources refer to people with potential that can be utilized and developed to become adaptive social beings (being able to adapt to natural challenges, development of science and technology, and socio-cultural changes) and transformative social beings (being able to understand, translate, and grow all of their experiences and social contacts for the benefit of themselves and the environment in the future). Therefore, they can use the potential of the natural surroundings in a balanced and sustainable manner. Human resources are key to the success of all aspects/potentials of local content. This aspect can positively and negatively impact the quality of local content to be developed, depending on the people's paradigm, culture, and work ethic. Local content is not realized and implemented without involving and placing humans as a central aspect. To support the implementation of local content curriculum, there are four private colleges, 25 vocational schools, 51 senior/Islamic senior high schools, 142 junior/Islamic junior high schools, 385 primary/Islamic primary schools, and several groups of art and culture in Banggai Regency. --- d. Analysis of Local Content Curriculum Context Viewed from Cultural Potential The dominant cultural identity in Banggai Regency is the culture of Banggai, Balantak, Saluan, and Andio. Tribes in this regency include Balantak, Saluan, and Andio tribes, all of which have their characteristics in terms of language and art. The Balantak tribe is located in Banggai Regency, which has been present with its customs for a long time. In its history, this tribe used to be a fusion of seven community groups in the family of pitu bense tompotika staple bondolong, who spoke the same language, namely the Gombe language. The language has been preserved and used as an everyday language better known today as the Balantak language. The Saluan tribe is a tribal community with a distinctive name, the Loinang people. Most Loinang people work as farmers who grow crops on the land or create their fields near the villages. The language used by the tribe with a population of 172,670 people (based on the 1985 population census data, in cultural ideas) is the Saluan language. Meanwhile, the Audio tribe occupies the Tompotika mountain valley and inhabits the Masama district, Banggai Regency. 80% of the population work as farmers and gardeners and 20% as fishermen and office workers. This tribe communicates with the Andio language, different from the one used by the other three tribes in the Banggai Regency (Banggai, Balantak, and Saluan languages) Moreover, the Banggai tribe mostly inhabits the islands, namely the Banggai Laut and Banggai Kepulauan regencies. Previously, these regencies were part of the Banggai Regency. Only then did they experience restructuring into two regencies. The language used by most of the Banggai tribe is the Banggai language. However, there have been many changes due to the cultural fusion with various tribes in the regency, including the Bugis, Gorontalo, Jawa, and Buton tribes, making the native language of the Banggai tribe only spoken in the Bulagi area, the Sea-sea tribe. Apart from the language, tribes inhabiting the Banggai Regency have cultural diversity that still exists today, such as Tumpe, Sumawi, Ande-ande, Osulen, Tontila, Umapos, Balatindak, and others. One frequently performed culture is the Molabot Tumpe traditional ceremony held annually in September, coinciding with the laying of the maleo bird (Sulawesi endemic bird living in the Bakiriang area, Batui District). This ceremony is a series of past customs of the Banggai Kingdom that had historical ties to the establishment of Banggai Kepulauan and Banggai Laut regencies. All in all, Banggai Regency has a variety of cultures with characteristics from its linguistic and artistic aspects. However, more or less the same as the abovementioned natural resource potential, the cultural potential in Banggai Regency has not been implemented as part of school lessons except for the language --- e. Analysis of Local Content Curriculum Context Viewed from Historical Potential The historical potential is in the form of relics and heritage traditions that are still preserved presently. If their management is optimized, historical concepts will be a tourist attraction that can also become an asset or a local advantage of a certain region. Consequently, preserving traditional values by giving a new touch to combine traditional and modern interests is important, meaning that the historical asset or potential can be part of local content. Given below are the data on the historical potential of Banggai Regency. Similar to the cultural potential, Banggai Regency also has historical potential in the form of historical heritage. Unfortunately, the people of Banggai Regency, especially the younger generation (students), have not widely recognized the historical heritage. This historical heritage can be part of local cultural content in the basic education curriculum to provide knowledge to the students regarding the history of their region, along with becoming part of the tourism promotion of Banggai Regency in supporting the region's progress. --- Analysis of Local Culture to be Developed in the Basic Education Curriculum Based on the identification of local culture described previously, an analysis is carried out to determine local cultural content to be developed in the basic education curriculum. --- a. The Conformity of Students' Development Level The stages of student development have distinctive characteristics and separate developmental tasks useful as directions for normal development. On the contrary, success in performing developmental tasks creates a feeling of pride and happiness. Universally, maturity ends in optimizing the development of the human soul, which can only be reached when it goes through a process toward the ultimate goal of human personality development (Ilahi, 2012;25-26). Education in the contemporary context is an effort to develop and encourage humans to appear more progressively based on high values and noble life to create a perfect being related to reason, emotion, and action. The culture of Banggai Regency has significant relevance to Law Number 05 of 2017 concerning the Advancement of Culture. Thus, the government of Banggai Regency prioritizes education as a vital facility to empower the local culture to create civilized younger generations of Banggai Regency and become heirs to local culture who can maintain and preserve their genuineness in social life. --- b. Availability of Educators Implementing the curriculum of local cultural content must be supported, which are considered essential elements for applying local content in an educational unit. As stated in the Regulation of the Minister of Education and Culture of the Republic of Indonesia Number 81A of 2013 concerning the Implementation of Curriculum of Local Content Development Guidelines Point D, teachers are the supporting capacity for implementing local content (item 2). The teachers assigned to the local content subject must have a) ability or expertise and graduated from the relevant field; b) experience in the covered field; c) a strong interest in the covered field. Local content teachers can come from outside the educational units, such as the nearest educational units, community leaders, socio-cultural actors, etc. --- c. Oriented to Local Culture Introduction As affirmed in Law Number 05 of 2017 concerning Advancement of Culture Article 28 section 1). Central and regional governments must publish information on the inventory, security, maintenance, and rescue objects of cultural advancement; 2) Everyone can play an active role in publishing information relating to the inventory, security, maintenance, and rescue of advancement of cultural objects; 3) Publication is done to disseminate information to the public within the country and abroad with various forms of media. The matter mentioned above is part of the elaboration of local cultural potential that emphasizes protection, development, utilization, and supervision so that culture grows and develops, making it recognized by younger generations through school subjects. Hence, the use of the local cultural content curriculum as a subject is a concrete step for the government of Banggai Regency through Regent Regulation Number 56 of 2017 concerning the Curriculum of Local Content of Local Languages (Saluan and Balantak). It functions as part of 1). introduction to the local culture of Banggai Regency on the national and international level, 2). Regional development on the national and international level, 3). As a form of devotion to the local potential that is explored from the identity of the ancient people in terms of language, art, and traditional games. --- d. Covering Dimensions of Knowledge, Attitude, and Skills From a human's perspective, education is fundamental to students' learning process. In a universal setting, education positively affects developing and cultivating the student's creativity, skills, and personality. Consequently, the function of education is believed to mainly cover the needs of students to get motivation and stimulation in performing their learning activities. This motivation and stimulation have a significant impact on achieving the growth of three basic components as basic educational functions, namely cognitive aspect (knowledge), affective aspect (personality), and psychomotor aspect (skills). --- e. Availability of Facilities and Infrastructure To integrate the development of local cultural content into a subject in primary schools, it is necessary to have facilities and infrastructure that meet its minimum criteria. The minimum criteria of facilities comprise furniture, educational equipment, media, books, other learning resources, information and communication technology, and other equipment that every school must have. Meanwhile, the minimum criteria of infrastructure consist of land, buildings, rooms, and power installations and services that every school must have. --- f. Having No Conflicts with Religious Values Education positively affects the development and cultivating the students' creativity, skills, and personality. Law of National Education System Number 20 of 2003 Considering National Education System Article 1 section (1) describes the substance of education as a conscious and planned effort to create a learning atmosphere and learning process so that students actively develop their potential to have religious, spiritual strength, self-control, personality intelligence, morals, and the skills needed by themselves, society, nation, and state. Through the development of this local cultural content, education in Banggai Regency is expected to be a pathway to carry on culture or instill the ability to behave, alongside teaching skills and knowledge and playing a role in enhancing the personality of students to be religious. This requires the creativity of teaching the development of local cultural content as an applicable and targeted part of guiding great and noble students in everyday life at school, at home, and in the community. Through local cultural content subjects, primary school teachers are expected to create students with noble characters and be helpful to the nation, state, and religion. The curriculum of local cultural content development integrated into a subject, namely arts, culture, and crafts, in Group B, is expected to lead the process of moral actualization and developing spiritual, noble, and ethical characters with life values as a guide for us to a better and more meaningful life. Thus, this can bring forth moral nobility through piety in religious rituals, building human interaction, and respecting the environment. --- g. Being Able to Counteract Social and Security Vulnerability Banggai Regency has a lot of local wisdom and cultural content, as stated in the "Document of Cultural Ideas of Banggai Regency in 2018", including the tourism potential of nature, beach, history, music and dance, and traditional games and sports. It can be part of the resolution to prevent the region's social vulnerabilities and security threats if managed properly. We have a cultural philosophy, "Mompo Saangu Tanga Mombulakon Tano," meaning Put Our Hands and Thoughts Together to Build the Nation/Region. Moreover, the morality movement "Pia Na Sampa Ala," which unites elements of the life of Banggai Regency people from Luwuk to the border of the Obo Balingara (Nuhon) and Keramat Valley (Toili Barat) areas, means "see trash, take it." This movement does not only teach a concept of "taking" but also moral awareness in the sense that any trash we see is picked up and disposed of in the trash bin. This philosophy comes from the cultural characteristics of Banggai Regency with the capital city of Luwuk called "BERAIR" (Bersih or clean, Aman or safe, Indah or beautiful, and Ramah or friendly). If managed properly, the very multicultural areas, including Saluan, Balantak, Banggai, Java, Bugis, Bali, Buton, Muna, Padang, Lombok, and others, will be able to compete with other regions, such as Raja Ampat, Bali, Bunaken, Wakatobi, Lombok, and even Yogyakarta. --- h. Developing Basic Competencies by Referring to the Core Competencies In every syllabus, a basic concept that needs special attention is integrating each core competence 1, 2, 3, and 4 within one unit or topic discussed. From the integration of all core competencies, the basic competencies are created (Kurniasih and Sani, 2014;46). Learning process planning includes a syllabus and lesson plan that contains the subject identity, competence standards, basic competencies, competence achievement indicators, learning objectives, teaching materials, time allocation, learning methods, learning activities, learning assessment, and learning resources (Regulation of the Minister of National Education Number 41 of 2007 concerning Process Standards for Primary and Secondary Educational Units). --- i. Compiling Local Content Syllabus The syllabus contains the subject identity or theme, competence standards, basic competencies, learning materials, learning activities, competence achievement indicators, assessment, time allocation, and learning resources as a reference for developing lesson plans. The syllabus is developed by educational units based on content standards, graduate competence standards, and guidelines for preparing the school-based curriculum. In its implementation, the teachers can develop the syllabus independently or in groups in a school or several schools, a group of subject teachers or a teacher activity center, and the Education Board. This process is under the supervision of the Education Board of the regency or city responsible for primary and junior high schools, senior and vocational high schools, and the department in religious affairs for Islamic primary, junior, senior, and vocational high schools (Regulation of the Minister of National Education Number 41 of 2007 concerning Process Standards for Primary and Secondary Educational Units). Chamsiatin (in Akbar, 2017;28-29) points out that syllabus development follows steps: 1) fill in the identification column and 2) review competence standards. Reviewing competence standards needs to pay attention to (1) the hierarchy of scientific disciplines or material difficulty levels, (2) the linkage of competence standards and basic competencies between subjects, (3) the review of basic competencies, and (4) identifying the main materials. Reviewing main materials needs to pay attention to (1) the level of students' physical, intellectual, emotional, social, and spiritual development, (2) benefits for students, (3) scientific structure, (4) the depth and flexibility of materials, (5) the relevance to students' needs and environmental demands, and (6) time allocation. Next is (5) develop learning experiences; learning experiences contain learning scenarios that highlight students' learning experiences, giving them opportunities to construct their knowledge, develop their life skills, and be meaningful to their lives. Accurately opting for learning approaches, models, methods, techniques, and tactics greatly determines students' learning experiences. 6) Formulate indicators; indicators are the elaboration of basic competencies showing signs of students' actions or responses. Indicator development should consider regional characteristics, educational units, and students, using structured and observable operational verbs. Choices on operational verbs can be formulated by the teachers and used as a basis for developing assessment instruments; 7) determine assessment types; the assessment is done by using a test or a nontest in a writing, oral, performance, product, attitude, project, portfolio, self-report, and other relevant forms; 8) determine time allocation; determining time allocation in each basic competence is based on the effective amount and time allocation of subjects per week by considering the number of basic competencies, flexibility, depth, difficulty levels, and basic competence importance levels, according to the needs of students to master basic competencies; 9) determine learning resources; learning resources cover reference books, objects, materials, information sources, events, physical-social-psychologicalcultural environment, and other relevant things. Learning resources should align with competence standards, basic competencies, indicators, and learning objectives. --- CONCLUSION The present work draws the following conclusions regarding the analysis result of local culture in the basic education curriculum in Banggai Regency. First, identifying and analyzing the context of the local content curriculum involves an in-depth investigation of relevant factors, including geographical potential, natural resources, human resources, and cultural and historical dimensions that form the foundation of the area concerned. Survey and interview methodologies are implemented as the main instruments of primary data collection, complemented by secondary data sources that complement and enrich the understanding of the contextual framework. Second, an in-depth analysis of the context and potential of local culture produces cultural choices that can be developed, such as the Development of Tourist Destinations to increase environmental awareness, the Development of Regional Languages for appreciation of local linguistics, the Development of Regional Skills & Crafts Industries for economic growth, and Preservation of Regional Arts & Sports to pass on and appreciate cultural expressions. This finding is relevant to research variables on the development of local culture in the basic education curriculum, linking academic and practical aspects in maintaining the sustainability of local culture. Considering the findings related to implementing local culture in the basic education learning process and curriculum, this study suggests considering the following matters for the effectiveness of local cultural content learning. First, collaborate with external teaching staff such as community leaders and cultural actors, enrich students' perspectives, and increase the authenticity of local content. Second, ensure the availability of adequate learning facilities, including educational media, visual aids, and teaching materials, to support a variety of approaches and enrich students' understanding of local culture. Third, ensure that the budget is sufficient for implementing local content learning, including obtaining teaching materials, training teachers, and providing facilities by developing local culture in the basic education curriculum.

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Managing Grief of Bereaved Families During the COVID-19 Pandemic in Japan

This commentary discussed the psychological issues related to bereavement in the wake of the COVID-19 pandemic. Specifically, we addressed two aspects in the context of Japanese culture. The first relates to the psychological distress of members of the bereaved family who could not visit their loved ones who had COVID-19 before or after their death. The second relates to the bereavement experience of those who were unable to be with their loved ones when the end came, even though they did not have COVID-19, because of restrictions on visiting hospitals. We seek to focus on the need for a support system for bereaved families to help them through the grieving process, and discuss end-of-life care in such circumstances, and in the post-COVID-19 era, as in current day Japan.

INTRODUCTION The number of deaths worldwide due to the COVID-19 pandemic has exceeded 3 million as of April 20, 2021 (1). In this pandemic, the grief response may become more complex and prolonged, leading to psychological problems among people. During the same period, the pandemic caused 9,629 deaths in Japan, a 2% mortality rate (1). Thus, the number of COVID-19-related deaths has been relatively lower in Japan than in the Western countries, where the infection has exploded (2). As the number of deaths due to the pandemic increases, there is growing focus on the suffering of the bereaved families and their support systems in the wake of the COVID-19 pandemic. Pre and post-face-to-face family contact with loved ones is limited in in order to prevent infection (3). The suddenness and unpredictability of bereavement due to COVID-19 makes it challenging to establish advance care planning, a key component of effective terminal care (4). Bereavement due to COVID-19 infection may also interfere with the adaptive mourning process in terms of disruption of social norms, rituals, and mourning practices for death, as seen during past epidemics of infectious diseases (5). Because of these peculiarities, there is concern that bereavement due to coronavirus infections may increase psychological risks, such as complicated grief and depression (5,6). For this reason, safer funeral practices have been explored in infectious disease pandemic disasters through the modification of funeral rites and the introduction of traditional ritual techniques specific to each culture (6,7). In the early stages of the pandemic, public awareness regarding COVID-19 deaths was low because there was no rapid increase in the number of deaths in Japan. However, public awareness increased considerably following the mass media broadcasts of the deaths of two celebrities from COVID-19-a popular comedian and a famous actress-in March and April 2020, respectively. Around the same time, there were infections among funeral workers, which raised public concern about conducting funerals in these difficult times. It became apparent that bereavement during the COVID-19 pandemic was different from that caused by other types of death in Japan. We addressed two issues related to bereavement. First, family members of persons succumbing to COVID-19 were not allowed to bid goodbye to the deceased before death or see them face-to-face even after death. Second, the impact on end-of-life care and bereavement due to restrictions on visits to hospitalized patients, which had significant ramifications given the fact that a majority of people die in hospitals in Japan (8). We shall discuss efforts to address these issues in Japan. --- POTENTIAL PSYCHOLOGICAL CONCERN REGARDING BEREAVEMENT DUE TO COVID-19 In early April 2020, during the initial stages of the pandemic, a statement regarding its psychological impact was released by the Chairman of the Disaster Preparedness and Disaster Response Committee of the Japanese Society for Traumatic Stress Studies. The statement pointed out that bereavement due to COVID-19 could lead to psychological problems such as prolonged grief and ambiguous loss, one which is without closure or clear understanding of why it occurred (9). In order to prevent the spread of COVID-19 in Japan, it was recommended, in principle, that visiting a person at the end of life with COVID-19 infection should be prohibited (10). Not being present at the death of patients with COVID-19 infection impedes the usual farewell rituals conducted for the deceased by the bereaved. For example, touching the deceased's body helps those bereaved to realize that their loved one has actually died. Not being present at the end of a person's life and not being allowed to touch the body potentially interferes with the mourning process and increases the risk of prolonged grief (9). In the Netherlands it was noted that grief levels were higher among people bereaved due to COVID-19 than those who had lost loved ones due to natural causes (11). Traumatic bereavement is more likely to occur when the death of a loved one is sudden or unnatural, such as when a loved one's body is damaged (12). It is accompanied by regret, anger, and guilt over death (For example, could the end have been prevented? Is the loved one suffering? Was death or dying unjust?) (12). Traumatic bereavement is a risk factor for PTSD and depression, as well as prolonged and complicated grief (13). These symptoms after bereavement often co-occur and share common features, but many epidemiological studies support their distinctiveness (14,15). Since bereavement due to COVID-19 shares the common feature of traumatic bereavement (6), systematic psychosocial support is needed. Psychological therapies, such as cognitive-behavioral therapy, optimized for each symptom, have been shown to improve PTSD, grief, and depression after bereavement (16,17). Although Japan has yet to report any empirical studies on grief after bereavement due to COVID-19, considering its cultural practices regarding funerals, it is reasonable to expect increased rates of prolonged grief. In Japan, it is customary to hold a funeral that is widely attended by family members, locals, or business partners. Such bereavement ceremonies are essential to facilitate the grieving process of the bereaved by allowing them to share their feelings and memories of the deceased. Traditional Japanese funeral ceremonies include sharing meals and alcohol with all the people who attend. However, most funerals have now been restricted in Japan, following instances of people becoming infected with COVID-19 after attending funerals. Being in close physical proximity with friends or others may produce feel-good hormones such as oxytocin, dopamine, and serotonin (18). When they are not physically present to say goodbye and grieve with a loved one, they may be more likely to experience a sense of ambiguous loss (18). An ambiguous loss is an indefinite loss that persists without resolution or closure, such as when a loved one is missing (e.g., kidnapped or swept away by a tsunami and never found) or physically present but psychologically absent (e.g., the former personality is still intact due to dementia) (19). Ambiguous loss differs from ordinary bereavement in that there is no definitive information or finality (19). In Japan, guidelines regarding COVID-19 patients have been in place right from the beginning of the pandemic. For example, the number of visits to critically ill patients should be limited. Existing restrictions relate to both end-of-life care and contact with the body after death. However, there is the need to take care of family feelings at each stage, which highlights the usefulness of communication through social networking services and online tools in the COVID-19 Nursing Practice Guide for Critically Ill Patients, Version 1 (published in April 2020) (20). In response to such recommendations, efforts at the grassroots level are underway to encourage communication between patients and their families through online communication tools such as videophones. For example, a physician has launched a crowdfunding campaign to purchase tablets in hospitals to facilitate online communication between critically infected patients and their families. He reached his goal in just half a day (21), and by the end of the campaign, he had raised more than five times his goal of more than 16 million yen, enabling distribution of the tablets to approximately 80 facilities (22). Similar efforts-making videoconferencing possible in end-oflife care settings, when patients cannot see their families faceto-face because of the pandemic (23)-are expected to alleviate patients' suffering in a way that medical personnel by themselves cannot. There is also a growing focus on comforting patients in their dying days, with families asking medical personnel to show the patients their favorite pictures and play their favorite music (24). From the perspective of preventing infection during transportation and cremating the bodies of those who have succumbed to COVID-19, the Japan Medical Association's Implementation Manual (6th edition) (25) requires that crematorium workers and mourners do not touch the body. Under these circumstances, to arrange the farewell ceremony close to the conventional one, flowers and photographs are placed on top of the coffin (which usually mourners set inside the coffin). In case there are restrictions on the number of people who can be present at the funeral, the cremation service provider can take pictures of the deceased before the funeral and show them to the family later. The family could also ask the service provider to place photographs, flowers, and other items related to the deceased on the coffin. Such acts at the funeral ceremony perhaps reflect the bereaved family members' sentiments that they are not leaving their loved ones alone at the time of their death. In addition, there is a custom of wiping and cleansing the body and applying makeup on the face after death (so-called angel care), which nurses generally perform when patients die in Japan (26). However, Version 2 of the COVID-19 Nursing Practice Guide for Critically Ill Patients published in July 2020 points out the importance of family members' participation in angel care in terms of grief care (26). The guideline recommends explaining the risk of infection to family members. If they still wish to participate in angel care, one recommendation is that they take the same preventive measures as do the medical personnel like wearing protective clothing, and touching a safe body area where they are not exposed to bodily fluids. Continuous efforts are needed to make mourning rituals safer with technology, and changes in funeral practices acceptable in each local culture (19). --- THE IMPACT OF RESTRICTED END-OF-LIFE CARE VISITS FOR NON-COVID-19 INPATIENTS Japan has been a super-aged society since 2007. In 2019, 28.4% of the population were 65 years and above and 4.7% were 85 years or older (27). In the 1950s, more than 80% of people died at home in Japan (28). In 2017, more than 80% of patients died in hospitals or institutions (8), despite nearly 70% of them wanting to die at home (29). Fewer people die at home because of the increasing trend toward nuclear families, which has led to a decline in family relationships (28). Many older relatives are moved into homes for the elderly because it may be a burden on family members and others who care for them (29). It is necessary to improve home medical care in present-day Japan to achieve end-of-life care at home, but only 5% of all medical institutions could support it in 2014 (8). For these reasons, many patients choose to receive endof-life care for diseases other than COVID-19 in a medical facility or palliative care. However, many hospitals now restrict visits to non-COVID-19 inpatients-a necessary and natural measureto prevent nosocomial infections (infections caused by pathogens in the hospital). There is a concern that these measures will result in a situation where terminally ill, non-COVID-19 patients, will not be provided with adequate end-of-life care. One of the risk factors for prolonged grief and PTSD after the death of a COVID-19 patient is the bereaved family's inability to say goodbye to the deceased. Since family members of non-COVID-19 inpatients have restricted visitation, the same psychopathological risk can be assumed for them (3). In light of the philosophy of palliative care, it is desirable for the psychological health of patients and their families to spend time with each other so that the patients are taken care of at the end of their lives, by their own. Therefore, there has been a move to provide a flexible response so that patients can be involved in end-of-life care while taking measures to prevent infection. In response to this situation, the Japanese Society for Palliative Medicine has suggested in a pamphlet that families should consider caring for patients at home (30). In one such case, based on a nurse's suggestion, a leukemia patient who was prepared to die in the hospital could go home and spend the next 10 days with his family (31). In some areas, the number of individuals switching to end-of-life care at home has nearly doubled compared to previous years (32). Cases of end-of-life care at home have also been reported in the UK and Portugal (33,34). In Portugal, most families encourage terminally ill patients to stay at home for an extended period (34). Although, in some cases, family members were unable to visit their hospitalized relatives freely during the COVID-19 pandemic, they asked individuals, called end-of-life caregivers, from some organizations such as hospices, to provide endof-life care for terminally ill patients living alone in Japan (35). Conversely, some physicians involved in palliative care have expressed concern about suggesting end-of-life care at home. It is necessary to consider the situation of families who have difficulties or anxieties about administering end-of-life care at home and seek gentle and heartwarming end-of-life care at hospitals for their loved ones, knowing that they will have to observe all the required measures against infectious diseases during their restricted visits (36). The UK has increased opportunities for bereaved institutional support, including the issuance of guidelines by the NHS to allow only one family member to visit patients who are unlikely to recover or who are days or weeks away from their death (37). Although end-of-life care has been discussed as an issue for medical care in super-aging Japanese society, COVID-19 could be considered an opportunity to think about dying at home. As a country with one of the highest life expectancy levels, Japan has focused on care for the elderly. It is precisely for this reason that it is expected to lead the world in establishing a system of advanced end-of-life care. --- RESPONSE TO BEREAVEMENT DUE TO COVID-19 IN JAPAN: LESSONS LEARNED FROM PAST MAJOR DISASTERS Japan experienced an extremely high level of loss in the Great East Japan Earthquake of 2011 (38), which led to the development of academic and public health efforts to deal with grief; these were also deployed during the COVID-19 pandemic. For example, the Japan Disaster Grief Support project established after this earthquake and implemented in May 2020, provided grief-related psychoeducational materials for the bereaved (39). Musashino University, the National Center of Neurology and Psychiatry, and others developed several treatment/prevention programs for prolonged grief, which have been shown to be effective in other countries too, based on empirical evidence. These include complicated grief treatment (40) and its Japanese version, along with group cognitive behavioral therapy for the bereaved with the distress of grief less severe than complicated grief (41). Since face-to-face therapy is limited during the COVID-19 pandemic, to provide such services, it would be necessary to devise programs including web-based grief treatment and videoconferencing psychotherapy (42,43). We provide a modified treatment program for patients in whom face-to-face treatment at an institution had to be interrupted as a preventive measure against COVID-19. Even before the COVID-19 pandemic, the U.K. and U.S. had established guidelines and training methods for telepsychological interventions and developed laws; this area has not yet been developed in Japan. In the early stages of the pandemic, some academic volunteers translated these guidelines into Japanese. The infrastructure for telepsychological interventions has been developed; however, its growth is not sufficient to meet the demand. Professionals must work together to ensure that grief support continues without interruption. To ensure that those who need help do not suffer, we must provide more flexible support, including online programs that can be implemented for bereaved families in remote areas, in preparation of the post-Corona era. --- DATA AVAILABILITY STATEMENT The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author/s. --- AUTHOR CONTRIBUTIONS YM and YT conceived the ideas. YM developed the draft paper. MI and SN verified the draft paper as experts in grief-related research and treatment in Japan and supervised this work. YT encouraged YM to investigate the research or guidelines related to bereavement due to COVID-19 in Japan. All authors have discussed the contents and contributed to the final manuscript. --- Conflict of Interest: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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Gender-Role Portrayals in Television Advertising Across the Globe

Although there are numerous studies on genderrole portrayals in television advertising, comparative designs are clearly lacking. With content analytical data from a total of 13 Asian, American, and European countries, we study the stereotypical depiction of men and women in television advertisements. Our sample consists of 1755 ads collected in May 2014. Analyzing the gender of the primary character and voiceover, as well as the age, associated product categories, home-or work setting, and the working role of the primary character, we concluded that gender stereotypes in TV advertising can be found around the world. A multilevel model further showed that gender stereotypes were independent of a country's gender indices, including Hofstede's Masculinity Index, GLOBE's Gender Egalitarianism Index, the Genderrelated Development Index, the Gender Inequality Index, and the Global Gender Gap Index. These findings suggest that gender stereotyping in television advertising does not depend on the gender equality prevalent in a country. The role of a specific culture in shaping gender stereotypes in television advertising is thus smaller than commonly thought.

The past four decades have witnessed a plethora of studies on gender-role portrayals in advertising on television (Cheng 1997;Furnham and Voli 1989;McArthur and Resko 1975;Milner and Collins 2000;Pacilli et al. 2016;Paek et al. 2011). From the perspective of marketers and advertisers, gender is a primary segmentation variable in developing marketing strategies and defining target groups (An and Kim 2007;Milner and Collins 2000). Also, gender portrayals have possible effects on corporate images and on purchase intentions of consumers (Ford and LaTour 1996). From the perspective of activists, advertising councils, or policy regulators, however, the stereotypical depiction of men and women in today's ads is problematic for many reasons (Coltrane and Messineo 2000). It is argued that advertisers create and perpetuate gender stereotypes, which may erode gender equality and harm society at large (MacKay and Covell 1997;Oppliger 2007). The accumulated empirical evidence clearly suggests that gender roles are highly stereotypical in television ads (Eisend 2010;Furnham and Mak 1999;Furnham and Paltzer 2010). However, despite this strong research tradition around the world, it is less clear how a country's culture shapes gender roles in TV ads. This research deficit can be traced back to the research designs used in previous research. In fact, most research on gender stereotypes in television advertising is based on single-country studies (Das 2011;Kim and Lowry 2005;Uray and Burnaz 2003). Because such studies work with a specific sample at a specific time of the year, we cannot use them to compare findings across countries. For instance, if we see a difference between two studies from two different countries, we may not be sure whether the observed dissimilarities reveal cultural differences or whether they can be traced back to differences in time frame, sampling, codebook, or other characteristics of an individual study (Matthes et al. 2012). Comparative research is therefore urgently needed. Only a very few studies have analyzed gender roles in a comparative fashion allowing for a test of country and cultural differences (An and Kim 2007;Gilly 1988;Milner and Collins 2000;Paek et al. 2011). Most of these studies have relied on one or two comparative gender indices (such as Hofstede's), and more recent indices have not been employed. This limitation makes it difficult to come to a definite conclusion about the role of cultural variables in explaining the portrayal of men and women in TV advertising. Even more importantly, almost all the relevant studies have looked at television ads in only two or three countries (Gilly 1988;Milner and Collins 2000), which is a clear limitation in terms of detecting cultural patterns. In fact, only Paek et al. (2011) looked at television advertisements across seven countries and used Hofstede's masculinity dimension and the gender development index to explain gender-role portrayals. Although Paek et al.'s (2011, p. 204) study is pioneering in many aspects, they only tried to predict the gender of the primary character and the voiceover and sampled the material from different months (i.e., July vs. November), Bwhich may reduce the generalizability and the comparability of [their] findings within and across the countries.^Also, their data are from 2002, and it remains unclear-as with most content analytical research-how the findings can be generalized to more recent years. Even more importantly, all the known prior comparative studies have not empirically modeled the influence of culture on gender stereotypes. It is not the same to interpret differences between countries by drawing on cultural differences as it is to empirically measure and confirm the role of culture in an adequate statistical model. If a specific culture shapes gender stereotypes, then a country's score on a cultural dimension should help to explain the degree of gender stereotyping. Unfortunately, such a multilevel analysis (see Raudenbush and Bryk 2002) is not known to have been conducted in extant research. Therefore, the aims of our study were to observe gender-role portrayals around the world, using comparable measures, sampling strategies, and classic as well as recent gender indices to explain country differences. We analyzed a total of 1755 television advertisements from 13 countries, which were selected based on their scores on various gender indices: Austria, Brazil, China, France, Germany, Japan, Netherlands, Romania, Slovakia, South Korea, Spain, United Kingdom, and United States. To date, our study is the largest known study on gender portrayals ever conducted, and we are the first to employ the concept of gender egalitarianism from Project GLOBE (House et al. 2004) and various other gender indices at the same time. --- Gender-Role Portrayals in Advertising Research on gender role portrayals in U.S. television advertisements started in the 1970s (Dominick and Rauch 1972;McArthur and Resko 1975), followed by research in Great Britain and Europe in the 1980s (Furnham and Voli 1989;Manstead and McCulloch 1981) and in Asia in the 1990s (Cheng 1997;Sengupta 1995). Generally, this research has led to the consensus that gender roles are highly stereotypical in television advertisements (Eisend 2010;Furnham and Paltzer 2010) across a range of commonly explored variables. The most frequently analyzed variables are the gender of the primary character, the gender of the voiceover, the age of the primary character, and the setting associated with the primary character. Analyses of the gender of the primary character led to rather mixed results in previous research, with some studies showing male predominance, others showing a female predominance, and still others finding almost no difference. Nevertheless, the majority of studies showed a predominance of male primary characters (see Eisend 2010;Furnham and Paltzer 2010). Some research has indicated a relation between Hofstede's masculinity index and the gender predominance of the primary character (Milner and Collins 2000), whereas others found the predictive role of Hofstede's masculinity index to be minimal (Paek et al. 2011). We thus hypothesize that there will be more men than women depicted as primary characters in our analyses (Hypothesis 1). The age of the primary character is another widely studied variable. Most studies report a predominance of women in the younger age segment (under 35), whereas more men were found in the middle and older age segments (Furnham and Mak 1999;Furnham and Paltzer 2010). In a meta-analysis, Eisend (2010) found that the odds of women being younger are three times higher than for men. Hence, there are strong grounds to expect that female primary characters will be depicted as younger compared to male characters (Hypothesis 2). Furthermore, the predominance of male voiceovers (which was often interpreted as the Bvoice of authority^) is one of the most consistent findings in the literature-a predominance that is even more pronounced in Asia compared to other regions (Furnham and Mak 1999). Previous research has indicated that a higher score in Hofstede's masculinity index increases the odds of a male voiceover (Paek et al. 2011). Thus, we predict that there will be more male voiceovers compared to female voiceovers in television ads (Hypothesis 3). In terms of product categories associated with a specific gender, there are relatively few consistent findings; this may be because different studies often employ different product categories. One finding that was confirmed in most studies, however, was the association between women and body products, or as other studies called them, Btoiletries,^Bbeauty products,^and Bpersonal care products,^as well as Bhousehold and cleaning products^ (Furnham and Paltzer 2010). For men, product associations were less clear, but some studies found associations between men and television advertisements for cars, telecommunications, electronics, technology, and computers (Ganahl et al. 2003;Royo-Vela et al. 2008). Based on these findings, we expect that female primary characters will be more likely to be seen in ads for toiletries, beauty products, and cleaning products (Hypothesis 4a), whereas male characters will be associated more with telecommunications, electronics, technology, computers, or cars (Hypothesis 4b). The setting is another variable that has often produced clear gender divisions. Most often cited is the association of women with a home setting (Das 2011;Uray and Burnaz 2003;Valls-Fernández and Martínez-Vicente 2007). A meta-analysis shows that the odds of women being depicted at home (vs. at work) are approximately 3.5 times higher than for men (Eisend 2010). Another finding that was similar across most of the literature is that more men than women are shown in a workplace setting (Prieler and Centeno 2013;Valls-Fernández and Martínez-Vicente 2007). Therefore, we hypothesize that female primary characters will be more likely to be depicted in a home setting (Hypothesis 5a), whereas male characters will be more likely to be shown at work (Hypothesis 5b). In addition to these commonly analyzed variables, we focused on the working role of the primary character (no working role, high status worker, and lower status worker). Although categorizations differed, several studies investigated whether the primary character was working (Coltrane and Messineo 2000;Das 2011;Uray and Burnaz 2003) or was a homemaker (Uray and Burnaz 2003;Valls-Fernández and Martínez-Vicente 2007)both leading to highly stereotypical results that suggested more men than women are working and more women than men are depicted as homemakers. Thus we expect female primary characters will be more likely to be seen in lower status working roles compared to male primary characters, who will be more likely to be seen in higher status roles (Hypothesis 6). --- Cultural Models, Gender Indices, and Advertising To fully understand gender-role portrayals, scholars have repeatedly pointed to the important role of cultural differences. The most widely applied cultural model in advertising research is Hofstede's cultural dimensions (Okazaki and Mueller 2007), including four dimensions (he later added two additional ones): power distance, individualism/collectivism, uncertainty avoidance, and the masculinity dimension (De Mooji and Hofstede 2010;Hofstede 2001). The most relevant dimension for the purposes of the present paper is Hofstede's masculinity dimension, which has been used in cross-cultural content analyses on gender in advertising, including studies comparing two countries (An and Kim 2007;Huang 1995;Moon and Chan 2002;Odekerken-Schröder et al. 2002) and some comparing three or more countries (Milner 2005;Milner andCollins 1998, 2000;Paek et al. 2011;Wiles et al. 1995). However, only a few studies have confirmed an association between the masculinity index and gender portrayals (Huang 1995;Wiles et al. 1995), whereas more studies have led to mixed results (An and Kim 2007;Milner and Collins 2000) or to results that were mostly opposite from those predicted by Hofstede's masculinity index (Milner 2005;Moon and Chan 2002;Odekerken-Schröder et al. 2002;Paek et al. 2011). Considering the mixed results of previous research in general and criticisms of Hofstede's (2001) study in particular-as being rather outdated (An and Kim 2007;Okazaki and Mueller 2007) and for its masculinity dimension that mixes two sub-dimensions (i.e., the characteristics of a society and the gender role distinctions) (Emrich et al. 2004;Hofstede 2001)-it is crucial to use additional indices, such as the more recent framework from the GLOBE project (House et al. 2004). Its theoretical importance and promise have been mentioned in several articles on theory in advertising research (Okazaki and Mueller 2007;Taylor 2010). Still, the GLOBE study has been used rarely in gender stereotyping research to date. In contrast to Hofstede's study, the GLOBE project differentiates between societal practices and values. Practices are measured through questions regarding Bwhat is,^while values are measured through questions regarding Bwhat should be^ (House et al. 2010). We have decided to use societal practices in our study because gender portrayals are about the way a society actually performs, whereas values are about how a society should perform (House et al. 2010;Okazaki et al. 2010). Although Hofstede's (2001) masculinity index influenced the GLOBE project (the GLOBE dimensions include: Performance Orientation, Uncertainty Avoidance, Human Orientation, Institutional Collectivism, In-Group Collectivism, Assertiveness, Gender Egalitarianism, Future Orientation, and Power Distance), the latter separated this dimension into gender egalitarianism and assertiveness. Gender egalitarianism was defined as Bthe degree to which a society minimizes gender role differences while promoting gender equality^ (House et al. 2010, p. 118). Gender egalitarianism reflects society's beliefs about whether biological sex should determine roles in society; gender egalitarian societies rely less on biological sex to make those determinations (Emrich et al. 2004). In such societies, there is less occupational sex segregation, more women in the labor force and in positions of authority, and generally a higher status for women. Thus, gender egalitarianism is clearly related to our study. Despite the call to use Project GLOBE's dimensions in advertising research (House et al. 2010;Okazaki and Mueller 2007), only a few studies to date have employed them. These studies have included the dimensions of assertiveness (Okazaki et al. 2010;Terlutter et al. 2010), performance orientation (Okazaki et al. 2010), and humane orientation (Diehl et al. 2012), and they have indicated an association between GLOBE dimensions and advertising evaluations. Thus, no known study to date has used gender egalitarianism as a theoretical framework or used Project GLOBE dimensions in content analysis. In addition to testing the predictive power of cultural models for gender stereotyping, we take into account other dimensions related to gender development because previous research has indicated that gender role portrayals may be influenced by a country's gender development (Eisend 2010;Paek et al. 2011). Paek et al. (2011) found that the predictive role of the Gender-related Development Index (GDI) by the United Nations Development Program (UNDP) seems to be minimal for the gender of the prominent character in an advertisement. However, they also reported that the odds of using a male voiceover significantly increased as GDI scores dropped. In his meta-analysis, Eisend (2010) used another gender index created by the UNDP-namely, the Gender Empowerment Measure (GEM)-and found a correlation between the GEM and gender stereotyping in advertising. Our research extends these studies by testing whether the GDI (UNDP 2014a), the UNDP's Gender Inequality Index (GII) (UNDP 2014b), which replaced the GEM due to criticism, and the World Economic Forum's Gender Gap Index (GGGI) can predict gender stereotypes (Hausmann et al. 2014). All of these indices are based on demographic data. The GDI is based on gender gaps in life expectancy, education, and incomes; the GII on reproductive health, empowerment (such as share of parliamentary seats and higher education levels) and labor market participation; and the GGGI is the most inclusive, being based on gender gaps on economic, political, educational, and health criteria (Hausmann et al. 2014;UNDP 2014a, b). Furthermore, besides Hofstede (2001), our study uses GLOBE for the first time in the extant research on gender portrayals as a theoretical framework (House et al. 2004). Because all indices differ and previous evidence of their impact on gender portrayals is mixed at best, we ask as an exploratory research question how the five indices (Hofstede's masculinity index, the Project GLOBE's gender egalitarianism index, the GDI, the GII, and the GGGI) predict gender-role portrayals in television advertising. --- Method We analyzed gender role stereotypes across Asia, America, and Europe (Austria, Brazil, China, France, Germany, Japan, Netherlands, Romania, Slovakia, South Korea, Spain, United Kingdom, and United States). We selected the countries based on the following criteria. First, we wanted to have a broad range of countries that have different scores on various gender indices. For that reason, we have included countries with a high score on Hofstede's masculinity index (Japan, Slovakia, and Austria) and with a low score (Netherlands), as well as countries with a high score on GLOBE's gender egalitarianism index (United Kingdom, Netherlands, and France) and a low score (South Korea). Second, we wanted to include the countries that were frequently sampled in previous studies, for instance, the United Kingdom and the United States. Finally, the selection was driven by practical reasons, such as access to TV channels and the language qualifications of our students/coders. The most recent data from all gender indices were used. In May 2014, 15 h of prime-time TV programming were recorded from those broadcasters with the largest shares of viewers for each respective country. We focused on private channels because we were not interested in the effects of country-specific regulations of public-service broadcasters. For Austria, we took the largest private channel as well as the largest public service channel because the audience share of the private channel is rather low. For China, we took CCTV-1 as the clearly dominating TV channel. The recording time was split into three typical weekdays of the same week, that is, 3 × 5 h per channel. The sample included weekdays and weekends to ensure a higher diversity of advertisements (May 14/Wednesday, May 16/Friday, and May 18/Sunday). We started the recordings after Mother's Day in most of the recorded countries to ensure that no large country-and/or region-specific events occurred during the days of recording. We focused on prime time because it was commonly used in previous studies (Paek et al. 2011). Because the definition of prime time varied by country, we used the most inclusive definition (i.e., from 6 PM to 11 PM). Like in most prior research (see Kim and Lowry 2005), duplicate ads, political ads, ads for films and CD's, public service announcements (PSAs), and ads with children, animals, or comic figures as dominant actors were not considered in our study. After 150 ads were collected in one country, we stopped additional data collection; however, the 3 days sampled produced less than 150 unique advertisements for several countries. Our sample consisted of 1755 ads. These included ads from Austria (ORF2, n = 98; Puls4, n = 124), Germany (RTL, n = 144), the United Kingdom (ITV1, n = 149), the United States (ABC, n = 149), France (TF1, n = 150), Spain (Telecinco, n = 146), Brazil (Rede Globo, n = 123), Netherlands (RTL4, n = 149), Romania (ProTV, n = 115), Slovakia (TV Markiza, n = 118), China (CCTV-1, n = 137), Japan (NTV, n = 150), and South Korea (SBS, n = 127). --- Coding Procedure and Reliability The codebook was adopted from prior research (Prieler and Centeno 2013;Furnham and Paltzer 2010;Nassif and Gunter 2008). The following categories were included in the analysis: primary character, product category, voiceover/narrator, age, dominant setting, and working role. These are standardized measures in this research (see Appendix Table 6 for codes). The coding team consisted of 30 coders from two major universities in South Korea and Austria. Coders were one of the authors and 29 undergraduate students receiving compensation/course credit for their work. Students were unaware of the hypotheses and were native or bilingual in the language of the country they coded. Training sessions on using the codebook were held with all coders prior to testing reliability. Ads were randomly selected for the reliability test but had to involve a primary character so that all codebook categories could be included. We performed three reliability tests using Krippendorff's Alpha (Hayes and Krippendorff 2007; n = 10 each, from 2 to 30 coders). One test was between coders for different countries on English-language advertisements, one test was between coders coding the same country prior to coding, and one test used the coded material without coders knowing they were tested. Although 65 % of the reliability measures in these three tests were above α = .80, the lowest intercoder results for the numerous intercoder reliability tests were for primary character (α = .80), voiceover/narrator (α = .89), age (α = .72), dominant setting (α = .72), and working role (α = .63). This was still above the recommended chancecorrected agreement of .60 by Neuendorf (2011). --- Results --- Primary Character and Voiceover In our first hypothesis, we stated that there will be more male than female primary characters. Among all spots with a primary character, 50.7 % of the characters were women. As can be seen in Table 1, in some countries (Brazil and Korea), the share of male primary characters was slightly higher than those of female primary characters. In other countries, however, the share was almost identical. Thus, we cannot find a substantial male predominance of primary characters. We also hypothesized (Hypothesis 2) that female primary characters would be depicted as younger compared to male primary characters. As Table 1 reveals, this pattern was the case in seven countries (Austria, Germany, France, Spain, Slovakia, Japan, USA). For the other countries, however, there was no significant effect. Based on previous research, we assumed in Hypothesis 3 that we would find more male than female voiceovers. When looking across countries (see Table 1), the share of male voiceovers (61.8 %) was, in fact, significantly higher (p < .01) than the share of female voiceovers (32 %). Confirming Hypothesis 3, this result was mirrored in most countries. The opposite effect, however, was found for France, with 58 % female voiceovers. --- Product, Setting, and Work Role In line with prior research, we expected that female primary characters would be more likely to be seen in ads for toiletries, beauty products, personal care, and cleaning products, whereas male characters would more likely be associated with telecommunications, electronics, technology, computers, or cars. The findings are reported in Table 2. In all countries but Japan, the association of female primary characters with toiletries, beauty products, personal care, and cleaning products can be confirmed. The association of male primary characters with products related to technology and cars (see Table 2) was observed for Brazil, Germany, the Netherlands, Spain, and the United Kingdom. The effect was not significant by the conventional p < .05 level for Romania, Slovakia, Austria, USA, China, Japan, and South Korea. Another prominent finding in previous research is that female primary characters are more likely to be shown in a home setting, whereas male characters are more likely to be associated with a work setting. Table 3 shows the findings for each country. The stronger depiction of female primary characters in home settings compared to male primary characters can be confirmed in Brazil, China, Germany, the Netherlands, Romania, South Korea, and Spain. There was no significant effect for six countries: Austria, France, Japan, Slovakia, USA, and United Kingdom. When it comes to the dominant depiction of male primary characters in work settings (see Table 3), we observed significant associations for Austria, Germany, France, Japan, the Netherlands, and the United Kingdom, but no significant effect for South Korea, Brazil, the United States, Spain, Romania, Slovakia, and China. As can be seen in Table 4, it was not the case that male characters are depicted in higher status jobs compared to female characters. This association was significant only for Japan. However, when interpreting our findings, the very small numbers of depicted working roles need to be taken into account. Therefore, we also checked whether or not a female or male character was depicted in any working role at all. One could anticipate that male characters will be more likely to be shown in any working role compared to female characters. As Table 4 reveals, the association between male primary characters and the depiction of a working role was statistically significant for Austria, France, Japan, the Netherlands, Slovakia, and the United Kingdom. The association was not significant by conventional levels for Germany, Brazil, China, South Korea, Spain, Romania, and the United States. --- Multilevel Analyses So far, we have observed how gender is related to the depiction of primary characters, and we have looked at single countries. Although such an analysis is useful, we are unable to explain why an association is found in one country and not in another. Thus, the question we want to ask is whether variations in the association between gender and character depiction can be explained by cultural differences between countries. In order to answer this question, hierarchical linear models (i.e., multilevel analyses) are needed (Raudenbush and Bryk 2002). Multilevel models are warranted when cases are clustered within countries. The advantages of multilevel analysis are that we can explain the individual-level variation in the dependent variable while statistically controlling the variation across levels of analysis and that we try to predict the variation of regression slopes by including constructs at the country level. In particular, we will examine whether the country differences in the relation between gender and character depiction can be explained by the five indices introduced previously. Because our outcome variables are binary, we ran a logistic hierarchical non-linear model with the Logit-link function using PQL estimation (distribution at level-1: Bernoulli) with the statistical package HLM 7. The level-1 model includes the gender of the primary character. The level-2 model includes the respective index (i.e., Hofstede's index, GLOBE, GDI, GII, or GGGI). Because the level-2 variables are correlated, we ran a separate model for each index. In the first step, we computed the variance components in order to examine whether there is a significant amount of variance between the classes. The upper-level variance is significantly different from zero for the age of the primary character (χ 2 = 55.29, p < .001), the product category body and cleaning products (χ 2 = 79.03, p < .001), the product category technical products and cars (χ 2 = 27.97, p < .001), working role shown (χ 2 = 30.79, p < .001), and the status of the average level of a gender index (e.g., the effect of gender on depicted age at the average level of Hofstede's masculinity index). For most outcomes, the level-1 effect of gender was statistically significant, confirming hypotheses Hypothesis 2 (character age), Hypothesis 4a (products for women), Hypothesis 4b (products for men), Hypothesis 5a (home setting), and Hypothesis 5b (work setting). However, we could not confirm the assumption that female primary characters are more likely to be seen in lower status working roles compared to male primary characters, who were theorized to be seen in higher status working roles (Hypothesis 6). Yet, female primary characters were less likely to be depicted in any working role compared to their male counterparts. Beyond the effects of the level-1 predictor, the main focus of the multilevel model lies on the cross-level interactions between the gender of the primary character and the gender indices. This interaction tests whether the variations between countries in the effects of gender on the outcome variables can be traced back to variations in the five gender indices. In order to answer this question, we first looked at the random-coefficients model. For the dependent variable age of the primary character, no systematic differences in the regression slope between the countries were observed (χ 2 = 9.50, p = .39). The same was true for the dependent variables of product category body and cleaning products (χ 2 = 7.08, p > .50), setting: home (χ 2 = 10.11, p = .34), setting: work (χ 2 = 5.05, p > .50), presence of a working role (χ 2 = 7.19, p > .50), and status of the working role (χ 2 = 12.45, p = .19). However, for the category of technical products and cars, there was a statistically significant variation that could be explained by level-2 variables (χ 2 = 25.23, p < .01; not shown in Table ). Thus, for most outcomes, there were no differences in the regression slope that can be explained by a specific culture. As can be seen in Table 5, we found no substantial cross-level interactions for all five gender indices. That is, none of the five gender indices was able to explain why there was a stronger (or weaker) association between the gender of the primary character and the outcome variables in a given country. Put formally, an increase in a gender index did not lead to an increase in the association between gender and the outcome variables. --- Discussion Our study is the largest known to date on gender-role portrayals in advertising, and it is the first known with sample equivalence, using comparable TV programs to illuminate the effect of culture on gender-role portrayals. In addition, it is the first study known to test the role of gender indices for genderrole portrayals in advertising using multiple gender indices as independent variables and multiple gender-role variables as dependent variables. We have found significant differences among the countries investigated. Although every country showed traditional gender-role portrayals for some variables, some countries showed non-traditional gender-role portrayals for several variables and thus seem to use a more gender-equal approach toward gender roles. For example, in the United Kingdom, no significant age differences were found between the share of male and female primary characters as well as male and female voiceovers, and similar shares of men and women were shown at home. Similarly, in the United States, men were not stereotypically associated with car/ electronic products, approximately the same number of men and women were shown both at home and at work, and men and women were portrayed in work roles about evenly. These findings align with those of several previous research studies showing that in the United Kingdom and several European countries, gender portrayals have improved in recent years (Furnham and Mak 1999). By contrast, advertisements in several countries, such as Germany, were identified as highly traditional in the use of gender roles for almost all investigated variables. Across all countries, some variables tend to indicate more traditional gender-role portrayals than others. For example, for more than half the countries, the variables of voiceover, age, toiletries/household products, and setting produced significant gender differences. Although we were able to observe differences between countries, we found that these differences cannot be explained by cultural or gender indices. The effect of a specific culture in shaping advertising messages is, therefore, smaller than commonly thought. This finding stands in contrast to Eisend's (2010, p. 436) meta-analytic results showing that Bgender stereotyping in advertising depends on developments related to gender equality in society rather than the other way around.^There are many potential explanations for why our study comes to a different conclusion. First and foremost, it is important to stress that no study of which we are aware has modeled the influence of culture in a multilevel model. As should be apparent, when looking at Tables 1, 2, 3 and 4, one could easily pick two or three countries and explain the observed differences by different scores on gender indices. However, such an analysis strategy does by no means confirm that an increase in a gender inequality index leads to an increase in gender stereotyping across countries. For this, a multilevel model is necessary. Second, it is possible that we have found no relationship between the cultural variables and stereotyping because gender portrayals in advertising are lagging several years behind actual developments in society (Eisend 2010;Kim and Lowry 2005). Unfortunately, this cannot be sufficiently tested with the present data because we would need to draw a sample of TV ads over time. Third, because gender stereotypes in advertising are decreasing over time (Eisend 2010), our findings may be different simply because our sample is the most recent one, reflecting a declining influence of culture. That is, although advertising and its gender-role portrayals may still vary across cultures, in some cases, they may become more universal due to global markets and networked publics (Paek et al. 2011). Fourth, our study used equivalent samples in all countries which is not possible in a meta-analysis such as Eisend's (2010). Fifth and finally, gender stereotypes might not be measured sufficiently by gender indices, and it may be that another index should be considered as more appropriate for measuring stereotypes (Williams and Best 1990). --- Limitations and Future Research Directions As with every research project, our project has several limitations. These include a rather small sample size in some countries, which was also the case in several previous studies (Furnham and Paltzer 2010). More importantly, our sample includes countries from Asia, Europe, and the Americas, but none from Africa or Oceania. Related to this point, we were not able to sample all countries that we would have liked because of a lack of access to the TV channels. Generally, the number of countries was very small for a multilevel model. Larger and more diverse samples are therefore needed in future research. In addition, our sample was drawn in May 2014. Thus, it is able to represent only this specific period; additionally, seasonal variations might be a concern in research on advertising. Furthermore, although we strived to choose comparable TV networks, this is a daunting task because various countries have different broadcasting systems. In addition, analyzing only one TV channel for each country, even the most dominant one, might not be fully representative of the pool of TV ads from each country. Finally, we suggest that future research studies should attempt to analyze gender-role portrayals in television advertising over time using longitudinal approaches. --- Practice Implications Practitioners in the countries we analyzed are called to raise their awareness for gender stereotypes in television ads. Even when practitioners reside in countries with high gender equality, gender stereotypes still prevail in television advertisements. Obviously, current (self-) regulatory efforts do not seem to be successful in implementing an unbiased representation of men and women in television ads. We suggest that advertising councils as well as advertising professionals should work toward a clearly defined set of recommendations about how men and women should be presented. We also suggest that advertising educators should sensitize students about gender role depictions in commercials, how they are observed using scientific methods, and what effects they may have on women and men. --- Conclusion Our study was able to show that there appears to be a global pattern of gender stereotyping still at work. This finding is significant for two reasons. First, it is well known that gender stereotypes in advertising can influence gender-role stereotypes in society, further perpetuating gender roles and gender inequality (MacKay and Covell 1997;Oppliger 2007). Second, our findings clearly suggest that gender stereotypes in TVadvertising can be found around the world, independent of a given gender equality status in a particular country. It follows that more progressive countries do not necessarily depict women-in terms of gender equality-in more progressive ways in television advertising. We hope our research helps to spur a discussion among scholars, advertisers, and regulators on the global dominance of gender stereotyping in advertising. --- working role (χ 2 = 27.28, p < .001). There was no significant amount of variance for the depicted setting: home (χ 2 = 16.15, p = .06) and for the depicted setting: work (χ 2 = 14.43, p = .11). The results of the multilevel model are presented in Table 5. Because we included the grand-mean-centered terms for the gender indices, the effects of gender on the outcome variables must be interpreted as the effect of gender at the

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Six things to know about the homicides of doctors: a review of 30 years from Italy

Background: Healthcare workers have a 16 times greater risk of suffering workplace violence than workers in other sectors and around 50% experience workplace violence in the course of their career. The objective of this study is to explore the characteristics and circumstances of work-related killings of doctors. Methods: Work-related homicides of doctors over the period 1988-2019 were identified retrospectively through the Italian national statistical agencies. Variables such as perpetrator, motive and location of the crime were obtained through forensic psychiatric work. After classification, the absolute and percent values of the main characteristics of the homicides were calculated. Results: Over the period considered, 21 doctors were killed in Italy in connection with their professional activity. In 52% (n = 11) of cases, the killer was one of the doctor's patients, in 29% (n = 6) of cases it was a patient's relative, in 19% (n = 4) an occasional patient (first consultation). The location of the homicide was a community clinic in 48% (n = 10) of cases, the street in 19% (n = 4) of cases, the doctor's home in 14% (n = 3), the hospital in 14% (n = 3) and the patient's home in 5% (n = 1). In 57% (n = 12) of cases the perpetrator was not affected by any mental disorders. The motive for the homicide was revenge in 66.7% (n = 14) of cases; in 28.6% (n = 6) the revenge was preceded by stalking. Conclusions: Doctors should be aware that the risk of being killed is not limited to hospital settings and that their patients' family members might also pose a threat to them.

Background Workplace violence is defined as any event that results in harm caused by work-related assaults, threats and abuse, whose impact on the victim may lead to a deterioration in health, safety and well-being [1]. Workplace violence (WPV) is often associated with the type of occupation, with higher incidence among professions involving interactions with many individuals; therefore WPV is a matter of considerable concern for the health sector. A US report notes that on average, 20 workers are murdered and 18,000 are assaulted each week while at work [2]; similar figures are provided by European reports [3]. Forty-eight per cent of non-fatal workplace violence incidents take place in the healthcare sector [4]. About 50% of healthcare workers experience workplace violence in the course of their career [5,6]. Healthcare workers have a 16 times greater risk of suffering workplace violence than workers in other sectors [7]. Nurses are more at risk [8,9] and female workers, both nurses and doctors, are at even higher risk [10]. In a sample of 1826 health professionals, about 11% had suffered physical assault, 5% on more than one occasion, while 64% had received threats or verbal abuse [11]. Saeki et al. [12] report a prevalence of 15%. Data from the US National Crime Victimization Survey for the period 2005-2009 show a rate of workplace violence of 5.1/1000 for all occupations, 10.1/1000 for physicians and 8.1/1000 for nurses. For mental health workers the violent victimisation rate was 20.5/1000, second only to the rate of law enforcement officers (47.7/1000) [13]. In Belgium, a study on patient-physician aggressions [14] conducted by means of an online questionnaire which was completed by 4930 participants, found that, in the preceding 12 months, 37% had been the victim of aggression: 33% verbal aggression, 30% psychological, 14% physical and 10% sexual. Psychiatric and emergency departments were the settings where violence most commonly occurred. In Israel, Carmi-Illuz [15] compared the risk of violence between a sample of hospital-based physicians and a sample of community-based physicians, finding a substantially comparable risk. A particular form of violence, homicide, is infrequent but extremely disturbing. In 2006, a leading schizophrenia specialist, W. S. Fenton, was killed at his office by one of his patients [16]. In the healthcare professions, homicide is a malicious and intentional event and is a very rare violent circumstance. We have carried out a retrospective analysis, to explore the main features of all the reported cases of work-related homicides of physicians in Italy over the past 32 years. --- Methods We relied on the main national statistical databases (ISTAT, EURISPES, EU-RES) [17][18][19] and on PubMed to trace all cases of work-related homicides of doctors in Italy from 1988 to 2019. The group was completed using the documentation from the forensic psychiatric work of the Psychiatric Clinic of the University of Sassari, Sardinia, Italy. The Italian Institute of Statistics (ISTAT) provides annual bulletins on homicides and other type of violences (e.g. intimate partner violence) disaggregated by determinants such as Region, gender and age, and type of work. We accessed the annual bulletin-specific databases to obtain te aggregate number of health-worker related homicides [17]. The EURIPSES on the other hand, is a national private agency that operates since 1982 on research in three main fields: social, political and finance. A specific national bulletin is released every year and deals with many aspects of the Italian society, including violence disaggregated by place and type of work [18]. Finally, the EURES represents another national Institute that since 1990 is intended to make research on socio-economic areas with studies at national and subnational level. The EURES also contains a specific database on homicides and related aspects like relationship between victims and assaulters, motivations, and risks analysis [19]. Based on all the available information from the aforementioned database, we first triangulated the information on figures related to homicides of medical doctors under our study period. Additionally, we searched PubMed for relevant articles. The search terms included: "homicide"; "doctor"; "medical"; "assault"; "aggression"; "nurse"; "health workers"; "hospital"; "health-care"; "kill"; "death"; "Italy"; "murder"; "physician". Both articles published in English and Italian were considered for this review. The criteria for selecting reports included the presence of murder or other closely related synonims and the exposures of interest (e.g. being a medical doctor). Epidemiological studies of any health outcome and of any study population as well as of any design, including cross-sectional, case-control and cohort studies, were considered. Two reviewers (LL and SB) evaluated the eligibility of studies. In case of discrepancy a third reviewer (AN) provided arbitration. The initial search provided 13 non-duplicate records, of which 12 full texts were assessed for eligibility. After exclusion of 5 records that did not meet the preestablished inclusion criteria, 7 studies were retained for qualitative synthesis. Of these 7 studies, 5 combined exposure and outcomes. While the literature mostly focuses on workplace violence, particularly in hospital settings, and is often primarily centred on psychiatric patients, our study has broadened the scope beyond hospital settings and psychiatric patients to include all cases of work-related doctor homicides. Specific variables were extracted from each dataset and their value as a percentage of the total was calculated. The victims' and the perpetrators' ages were grouped in 10-year intervals while the geographical location was divided into "Northern Italy" "Central Italy" and "Southern Italy and the Islands". The method of killing has been classified as "cold weapons" (referring to any weapon that does not involve fire or explosion), "firearms" and "other", while the locations of the homicide have been classified as "community-based clinics", "hospitals", "street", "perpetrator's home" and "victim's home". In addition to their gender (male/female), the offenders have also been classified according to whether they were psychiatric patients or not. A further distinction concerned the type of patient ("regular patient", "occasional patient", or "family member") and motive ("revenge", "crime of passion", "other"). --- Results From 1988 to 2019, 21 physicians were killed in workrelated circumstances in Italy, which means around 0.7 physician killed per year; slightly more than 20,000 overall homicides have been carried out in the same timeperiod in Italy. The victims were more often male (n = 15.7%), with a higher concentration (Fig. 1) in age group 50-60 (n = 7; 33.3%). Geographically, the homicides were more prevalent in Southern Italy (South and Islands) with 57.1% of cases (n = 12), while only 9.5% were recorded in Central Italy (n = 2) and the remaining 33.3% in Northern Italy (n = 7). As to method, 47.6% of the homicides were committed with firearms (n = 10) and 42.9% with sharp instruments/knives (n = 9). In one case (4.8%) a blunt weapon was used; in another case, the method was poisoning (4.8%). With regard to location (Fig. 2) about half of the homicides took place outside hospitals, mainly at GPs' surgeries or out-of-hours primary care services. The most common locations, accounting for 28.6% (n = 6) of cases, were GPs' and out-of-hours surgeries. Next come mental health outpatient clinics, making up 19.0% (n = 4) of locations. A further 19.0% of murders occurred in the street (n = 4) while 14.3% of cases occurred at the victim's home (n = 3). Three cases took place in hospitals (including adjoining locations such as the car park). One homicide took place at the offender's home (4.8%). With regard to the victims' medical specialties, the most common was psychiatry with an incidence of 28.6% (n = 6). This is followed by 4 murders of GPs (19%), 3 of primary care doctors in the out-of-hours service (14.3%) and 2 murders of urologists (9.5%). The remaining cases involved a forensic doctor, an anatomopathologist, a general surgeon, a gynaecologist, an oncologist and a neurosurgeon. In 52.4% (n = 11) of cases, the perpetrators were patients under the victim's care, while 19.0% (n = 4) were occasional patients. The remaining 28.6% (n = 6) were family members of the victim's patients. These latter six cases were all driven by revenge, specifically 4 of the perpetrators who were family members (19.0% of the total) sought revenge for the patient's death. In 2 out these latter 4 cases, the perpetrators were two fathers seeking revenge for the death of their little girls. In 66.7% of the cases recorded (n = 14), the motive for the murder was revenge without previous threats. In 2 cases, the motive was a worsening of the murderer's health. A further 2 cases were crimes of passion.. In only one case did the claimed motive originate after the victim had stopped treating the perpetrator. In another case, the motive for the murder is not entirely clear even though the offender, a psychiatric patient on probation, blamed both his victim and all the other doctors at the mental health clinic for the regime he was subjected to (i.e. for being required to report to the Mental Health Centre, MHC, every 3 days to receive treatment). In the last case, the murderer was a medical psychologist who was both a patient and a colleague of the victim, and who took revenge on his colleague for having been subjected to two compulsory mental health hospitalisation orders at the healthcare facility where he had previously been employed. In 6 cases (28.6%), the motive was revenge preceded by the offence of stalking/threats. Specifically, 2 cases were passion-related: the victims were two women doctors who had long been subjected to threats and stalking by their patients. In one case the murder was preceded by a caution issued by the police. However, 23.8% of cases (n = 5) are not explained by either passion or revenge. Indeed, 3 murders were committed in the out-of-hours general medical facilities by occasional patients (2 drug addicts and 1 intoxicated person) while 2 other cases took place at MHC outpatient clinics. Analysis of the data collected also shows that in 14.3% (n = 3) of cases the homicide was followed by the offender's suicide and in 9.5% (n = 2) the perpetrator killed more than one person. Lastly, 42.8% (n = 9) of the perpetrators had a psychiatric disorder while the remaining 57.1% (n = 12) had no diagnosed disorders at the time of the homicides (Fig. 3). --- Discussion Based on analysis of the data, we would like to highlight that murders on doctors are an extremely rare event; however, some relevant remarks can be made on the characteristics of the phenomenon and possible preventive measures. Firstly, the literature and statistical data confirm that the medical profession is a dangerous one. In addition to the constant risk of professional liability due to an increasing number of malpractice claims, doctors are exposed to the risk of physical assaults at work and, in extreme and fortunately rare cases, of being killed in connection with their profession. The US BLS (Bureau of Labour Statistics) (OSHA 4) reported that 69 healthcare workers (HCWs) were killed between 1996 and 2000 [20]. In Italy, in the period between 1988 and 2010, 17 physicians were killed at work [20]. The literature highlights the aggressiveness and violence of patients in hospitals and particularly the risk associated with psychiatric patients [21][22][23][24][25]. We have analysed the cases of physician homicides linked to the doctor-patient professional relationship, both within and outside clinical settings. The sample we examined supports more complex reflections. The first reflection concerns the location of the homicide: in most cases it was not the hospital. Out of 21 cases, only 3 homicides were committed in the hospital or in nearby places (e.g. car park), while the other murders took place outside the hospital. In particular, a significant number of murders occurred in outpatient settings (community clinics), while still others occurred at the patient's home, at the doctor's home or in casual places (on the street). In a particularly striking instance, the patient took a revenge on the doctor: he sent a poison-laced bottle of wine as a Christmas gift to the victim's home for the Christmas holidays, causing the doctor's death. This unusual and horrifying case confirms that the homicidal intent may play out beyond healthcare settings and reach the victims elsewhere, including in their own home. The significant number of homicides in places other than hospitals calls into question the limited scope of preventive measures, which so far have focused on hospital settings. Some authors [26,27] have reported a sharp decline in violent behaviour against healthcare workers after the introduction of specific security measures in hospitals. Similar systems would certainly also be effective in community clinics, where almost 50 homicides have taken place [17]; these outpatient settings as a rule have insufficient security arrangements and would require the implementation of security protocols. Another observation concerns the type of offender. In our sample, the perpetrators included not only the doctor's regular patients, but also patients' family members and occasional (drop-in) patients. With regard to the authors of violent acts in the workplace, Rippon [28] identifies several categories: patients, family members, visitors and co-workers. In Turkey, a study found that 64.5% of the attacks were carried out by the patients' family members [29]. This data also exposes the limitations of violent behaviour risk assessment and management systems in reducing the risk of violent behaviour by patients [24,30]. While these tools are certainly useful when dealing with patients registered with healthcare facilities, they may fail to prevent homicide in cases where the perpetrator is a patient's family member or an occasional/drop-in patient, as these types of individuals cannot be subjected to risk assessment. In the sample analysed, almost half of the perpetrators of homicide were patients' family members or occasional patients. The sample reveals a "wide scope of danger" both in terms of location, which extends beyond the hospital setting and may also include the doctor's or the patient's home, and in terms of offenders, who may also be patients' family members. Some remarks can also be made about the motives for the murder in the sample. In a large number of cases the motive was revenge against the doctor for a claimed error in diagnosis, surgery or treatment causing harm to the patient. In a number of cases the murder did not occur as an escalation of an outburst of violence but was the outcome of planned and premeditated revenge against the doctor. Often the revenge was preceded by threats. In some cases the murder was preceded by stalking. While the instances of stalking seem to be relatively few, their number may be an underestimated also due to the fact that this behaviour has been recognised as an offence only in recent years. Therefore, it would be appropriate to highlight the role of stalking as a risk factor for homicide, and to raise public awareness of this behaviour to improve its management and prevent its escalation into violent acts. While of course stalking behaviour is not necessarily a precursor of murder, a useful recommendation is to report all stalking behaviours and take specific precautionary measures. Finally, psychiatric patients warrant specific remarks. Large and Nielssen [30] have analysed homicides by psychiatric patients in psychiatric hospitals and proposed a classification into three patient categories: acute psychiatric patients soon after hospital admission, patients not receiving medication with a history of serious violence, and patients with dementia or intellectual disability, held in low-security inpatient settings in contact with vulnerable patients (victims of the homicide). In this study, the victims were both healthcare workers and fellow patients. In the sample we analysed, 43% of the perpetrators had a diagnosed psychiatric disorder, while 57% did not. We do not have data on how many offenders with psychiatric disorders were found to be not prosecutable due to mental impairment. A study by Knable [22] describes a sample of mental health workers who were killed by patients in the US. The study highlights the low frequency of these events (about one case per year) and describes the characteristics of victims and perpetrators. The victims were most likely young female caseworkers, with little work experience, killed during unaccompanied visits to residential treatment facilities. The perpetrators were mostly male, diagnosed with schizophrenia, with poor adherence to medication. The debate about the link between mental illness and violent behaviour is still open and very controversial. In accordance with the literature and in light of the data examined here, we recommend that psychiatric patients be assessed for their risk of violent behaviour, particularly if they have a history of violent behaviour, current substance use and non-compliance with their medication [24,[31][32][33][34][35]. .However, it should also be noted that individuals (patients or family members) who are not mentally ill can also be offenders. --- Conclusions This paper is significantly limited by the small size of the sample group, which makes it difficult to draw general conclusions. However, with this caveat, we can highlight six things to know about the homicides of physicians. 1. Physicians may be attacked not only in hospital settings but in other locations too, even at home. Isolated outpatient clinics are at high risk and would benefit from improved surveillance and security systems. 2. The perpetrator is not necessarily a patient, as doctors may be targeted by a family member of the patient seeking revenge. 3. Many cases stem from allegations of medical malpractice against the doctor. Conflict mediation systems should be set up for the parties' use. In Italy, the Gelli-Bianco Law, on the safety of healthcare and the professional liability of healthcare providers, has introduced compulsory mediation before legal action can be taken. --- 4. Stalking is a risk factor that should not be underestimated; doctors should be aware that it might precede violent behaviours. Physicians who are victims of stalking should always contact the police. 5. Psychiatric patients, especially those with a history of violent behaviour, substance use and poor adherence to their medication regimen should undergo a specific risk assessment for violent behaviour. However, the sample analysed suggests that the threat is not limited to psychiatric patients. 6. Physicians should receive specific training in effective communication skills and conflict management with patients and their family members, including non-violent communication techniques, listening skills and conflict identification and recognition. While each case in our sample has unique characteristics, each can be considered a piece of a broader puzzle, which requires more studies in order to move beyond prejudice and silence. --- Availability of data and materials The datasets generated and/or analysed during the current study are available in the ISTAT (https://www.istat.it/), EURISPES (https://eurispes.eu/) and EURES (https://www.eures.it/) websites. Public access to the databases is open. --- Declarations Ethics approval and consent to participate Ethics approval and consent to participate were not required, as this is an observational study based on anonymized data routinely collected by the ISTAT, EURISPES and EURES, which are public Italy bodies reporting on health and socio-economic determinants (according to Italian law, the study was exempted from approval by an ethics committee because all the data used were deidentified and publicly available). This study is also ethically compliant with the National Law (D.Lgs. 101/2018) and the "General Authorisation to Process Personal Data for Scientific Research Purposes" (nos. 8 and 9 of 2016, referred to in the Data Protection Authority action of December 13, 2018). --- Consent for publication Not applicable. --- Competing interests The authors declare that they have no competing interests. --- Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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The Smartphone: A Lacanian Stain, A Tech Killer, and an Embodiment of Radical Individualism

YAFR (Yet another futile rant) presents the smartphone: an unstoppable piece of technology generated from a perfect storm of commercial, technological, social and psychological factors. We begin by misquoting Steve Jobs and by being unfairly rude about the HCI community. We then consider the smartphone's ability to kill off competing technology and to undermine collectivism. We argue that its role as a Lacanian stain, an exploitative tool, and as a means of concentrating power into the hands of the few, make it a technology that will rival the personal automobile in its effect on modern society.

Introduction "Why should we cherish "objectivity", as if ideas were innocent, as if they don't serve one interest or another? Surely, we want to be objective if that means telling the truth as we see it, not concealing information that may be embarrassing to our point of view. But we don't want to be objective if it means pretending that ideas don't play a part in the so-alt.chi: Confronting Power in HCI #chi4good, CHI 2016, San Jose, CA, USA cial struggles of our time, that we don't take sides in those struggles." "Indeed, it is impossible to be neutral. In a world already moving in certain directions, where wealth and power are already distributed in certain ways, neutrality means accepting the way things are now. It is a world of clashing interests -war against peace, nationalism against internationalism, equality against greed, and democracy against elitism -and it seems to me both impossible and undesirable to be neutral in those conflicts." Howard Zinn, Declarations of Independence: Cross-Examining American Ideology. [30] "A phone, an Internet mobile communicator, a strangle hold on modern technology. . . A phone, an Internet mobile communicator, a strangle hold on modern technology. . . A phone, Do you get it? These are not three separated devices. This is one device, and we are calling it iPhone." Steve Job's Satirical Misquotes, 2007 This paper is a polemic. As such it makes no pretense at remaining neutral. As engineers and designers it's often not really in our interests to take sides in social and political debate. Our livelihoods depend on people giving us money to build things. Within HCI this has led to a passive acceptance of a middle class aspirational world where technology assists and entertains us. For example: "Let's age Tommy to 3 years old. Tom and Sara take him skiing for the first time. Tommy's SmartPhone, now version 23.0, downloads the 'Virtual Skiing Coach,' which uses accelerometers sewn into Tommy's clothing to sense his posture and then offer suggestions for maintaining balance; when it foresees an impending collision, it quickly blurts out instructions on how to stop." Generation Smartphone [25] Is this it? Is this the best we can do with all our technology and resources? How about making the world a better place? Has Candy Crush made the world a better place? Has it? Can you stop playing Candy Crush for a minute and answer me? Oh forget it. The smartphone, just like the personal automobile, has a big impact on society for good and ill. However, professional organisations who represent the technologists who are building and developing these systems are reluctant to take a position on how this technology is used or developed. SIGCHI has been described as "scrupulously apolitical" [11] p.57, whereas IFIP, the organisation that organises the yearly Interact conference in HCI, proudly describes itself as "The leading multinational, apolitical organization in Information & Communications Technologies and Sciences." http://ifip-tc13.org/about-us/ However, as Zinn notes, neutrality itself is a position, in general one supporting the status quo. Therefore, whereas one may laud the difficult balancing act required to satisfy the many interested parties in HCI, there may also be some discomfort with the extent the HCI community may seem to distance itself from the political and social consequences of the technology it researches, builds and promotes. It would be extreme to describe the HCI community as politically supine, playing lip service to social good while queuing up to take cash from commercial and government interests, but an outsider could get this impression. So wake up! The world is changed by technology. It's time to get off the fence. If you think smartphones will lead to a utopian information sharing society then make that case, if you think they are an evil scab representing a commercial strangle hold on Western society (and shortly all society) then let's hear you say it. In this paper we explain why the smartphone is one of the most important pieces of technology to affect our world since gun powder, the mechanical timepiece, and the petrol engine. We then consider its affect on complimentary and competing technology, and conclude by arguing that the smartphone is the ultimate technology to support an American flavour of radical individualism, and a means of concentrating power into the hands of the few. Almost all, new, high impact technology is accompanied by a shrill warning of doom: The novel, a product of cheap and ubiquitous printing, will undermine the morality of young ladies; TV, then video, then computer games, then social media, will corrupt the innocent, undermine society and lead to a dystopia, and so forth. Such warnings are often based on the claim that this or that technology is fundamentally different from technology that has gone before. Such differences are always a matter of degree, a mechanical time piece is similar to a sundial but allowed time keeping to become universal and pervasive, video was similar to TV but removed the control of what was seen and when from the broadcasters, a smartphone is similar to a desktop but you can use it while mobile and use it as a telephone. Key to the impact of technology is its role within society, its interaction with commercial and political forces, and the relationship individuals have with the technology. The smartphone is special because everyone has one (or will have one), it's the dominant form of interpersonal communication, and it is the dominant means of accessing data services. These services are not built by a benevolent set of magicians living in a fairy kingdom. They are built for the primary means of commercial exploitation. You are a data point and you are valuable. This is not the desktop you used to log onto once a week to write a letter or play a computer game, this device is with you all your waking hours recording everything about you. Commentators such as Morozov [10,18] and Naughton [19] elegantly articulate the importance of data ownership as well as critiquing the influence of Silicon Valley, and its offerings, on everyday lives and culture. Morozov in particular is well known for reprimanding the drive to solve problems -using arbitrary technologies -that do not actually exist, even calling out work published at CHI for this (i.e. "Bincam" in Thieme et al 2012 [27]). A more thoughtful, and constructive, treatment of this problem space is given by Raghavan [23] in his discussion of how Sevareid's Law ("the chief source of problems is solutions") can provide useful motivation to understand current technology design. However the importance of the device that is used to provide data to, and extract data from the individual, is underestimated. The smartphone is powerful, not just because of this role as a gateway, nor because of the commercial power behind it, but also because it has a critical psychological hold on its users. But we have seen nothing yet. Media streaming services have already killed off the high street music store, and the smartphone has pretty much killed the iPod [28]. In the future credit and debit cards can be replaced with the smartphone, car information systems can be replaced by the smartphone, remote controls for household appliances can be replaced by the smartphone. The trick is to lock users in to a specific system, and skim revenue from all these new activities. Currently tech companies like Apple are dwarfed in revenue by companies like Walmart, oil and gas are still the big revenue generators, but the smartphone offers unparalleled opportunities to control and make money out of a users everyday behavior. That is why Apple is valued at over $700 billion. Just as credit and debit cards began as a convenience to avoid carrying cash, to manage monthly expenditure, now it's very hard to live without a credit or debit card in modern western society. It is only a matter of time until having a smartphone will be a requirement for our day to day lives (and for many users they already are). --- The Psychological Importance of the Smartphone "Cluley and Dunne (2012) argued that a psychoanalytic account of commodity fetishism is needed to contend with the contradictory ways people consume. Retreading Marx with Freud, they conclude that narcissism rather than fetishism is truly what is at stake because the commodity form is not merely a masking of social relations of production; it is also, if not more so, a means of identification and selfaggrandizement." p.114, Reyes et al [24] We can argue that important commercial factors drive the ongoing development and take up of the smartphone, but it is our psychological relationship with the technology that makes it so powerful. Reyes et al [24] French TV, the approach offers us some insights into why the smartphone is so powerful. From Lacan they use the term look and the term gaze. Critical is their contention that the smartphone is more than just another fetishised commodity 1 . "In brief, our position is that the look involves phenomena of self-presentation and copresence, seeing and being seen as a social subject in real, brick-and-mortar space. The gaze, on the other hand, entails disruptive moments of disengagement with that first domain of the look. The former level of analysis is most congruent with Marxist conceptions of commodity fetishism, whereas the latter level of analysis is necessary for contending with cell phones as more than just another fetishized commodity and coming to terms with their unique position as communications technologies embedding consumers within new mobile media ecologies." -p.115, Reyes et al [24] AN Our interpretation of this is that the way the smartphone controls our consumption of media; mass, personal and in terms of social interactions, makes the device special. The smartphone connects us to another realm, as such it transcends technology and becomes a gateway, like a mirror, to the other, as well as the device being a traditional commodity. This affects the way we use and relate to the device. As an ethnographic study Reyes et al [24] relate this psychological framework to concrete observations, for example: The tension between the smartphone as a normal commodity (the look), in contrast with it's role as a gateway to the other (the gaze), can help explain our relationship with the device. Reyes et al [24] list conflicting behaviors caused by this tension: Individuals customise there device but must conform to the constraints of a mass produced device; They stay physically connected to their smartphones, even when disconnected from the information the smartphone is designed to access; Individuals are concerned with the impact the device has on their privacy but use and display the smartphone very publicly; Individuals exhibit discontinuous behavior, alternating between engaging with technology and the people around them; Individuals find themselves disregarding established social norms in order to use their devices. "I The smartphone, as a gateway to the other stains the environment (not necessarily in a negative way), but in a way that cannot be ignored. This is key to the psychological importance of the smartphone and leads to enormous social and personal impact much of which is extensively examined in modern literature. For example from the effect of the smartphone on feelings of isolation [22], the creation of digital identities [20], to the etiquette of sharing a smartphone (or not) [13]. As with the wrist watch and the automobile, the smartphone extends from the commercial deeply into the psychological. Here we need to distinguish between concepts like the cult of the individual -its bad to have the state oppress individuals because everyone matters -and radical individualism -Its all about me, and everything important and useful comes from individuals with the vision making it all happen (unless their strength is sapped by red tape and no-hopers supported by state handouts). Barbrook and Cameron [3] Within this context, the smartphone is a political tool; something that fights authoritarianism such as in the Arab Spring (Well, okay Egypt is looking pretty unsprung now but at the time the smartphone was heralded as a tool that would change political landscapes forever); something that can regenerate local communities with ideas such as time banking; or in contrast fight unionised labour and organised capitalism for example with Uber and AirBnB. But the true contribution of political change that we derive from the smartphone is the ability to monetise everything (monetise by the second, by the kilobytes, by the individual) and know everything about individuals (their interests, their movements, their routines, their friends and contacts). De Unamuno [6] offers a detailed exploration of the political impact of the smartphone from a Marxist perspective in order to "understand how the use of contemporary technology and smartphones in particular, enable an advanced form of exploitation, where smartphones are not only used to extract surplus value from workers' personal time-space, but also marketed as essential to the workers' cultural identities, something the workers must have but must not question." p.9-10 [6] However, the smartphone has also been promoted as something that can subvert formal power structures, encourage local community engagement and support the disenfranchised. It has been actively argued that the smartphone is a force for social good. For example Han et al [12] argues that "mobile technology suggests new opportunities for community informatics". In this work they use two community web services, one focused on digital cultural heritage, the other on local volunteer efforts using time banking. Han et al's work show how "mobile technology transcends the limitations of time and place, it expands the ways of accessing and interacting with local community information and lowers the barrier to participation". We applaud the work of researchers attempting to explore the use of technology for social good. However, believing that smartphones offer a route to achieving this goal is mistaken. Take Han et al's [12] study on time banking using hOurworld. If we find the Penn time bank we discover 189 current members with a total of 58 exchanged hours. The total staff and student population of Penn is approximately forty thousand so pretty much no one at UPenn uses time banking. We see this same story again and again within HCI Academic research: the potential for social good is outlined, a study is conducted, the results are promising, no take-up occurs, no interest is shown by commercial players. There's an irony that a device ostensibly for communicating with others is all about the person using it. The smartphone rivals the personal automobile as an expression of the self. You can't share them, they store all your personal data (cleverly in the cloud so you are locked into a specific manufacturer), and they are like little mirrors that you can stare dead eyed into and hope to see a better more aspirational you instead of a sad wage slave stuck in a soul destroying commute. Uber and AirBnB are the ultimate expressions of a laissez-fair system. By using the smartphone to monetise time by the minute and services by the kilobyte we can dispose of regulation, unionisation, collectivism in general. The phone is yours and it empowers you as an individual. However, the politics of the individual is, by it's nature, a politics that attempts to deny the existence of politics. It's not about the group, it's not about society, it's not about justice, its about you. In a dazzling slight of hand powerful organisations and interests convince users that only their individualism matters, thus disempowering the powerless, and generating vast quantities of personal data that empower the powerful. Dominant technologies have a significant impact on related fields; steam power was extinguished by the combustion engine, the typewriter by the desktop computer, the telegram by the telephone. Sometimes this is progress, but sometimes, like the effect of the personal automobile on pedestrian access, or cycling, the dominant technology can also impede progress. The smartphone is dominant for three reasons; 1. The commercial, psychological and political drivers behind the technology are very powerful 2. The ability of the smartphone to absorb multifunctionality, and 3. The ability for devices to become peripherals of the smartphone. The iPod was one of the first casualties [28], The desktop is pretty much the second attacked on two sides by tablets as well as smartphones. Aylett and Quigley [2] argue that the field of pervasive computing has been subsumed in many ways by the smartphone, and strongly argue that the smartphone, although ubiquitous, is not ubiquitous computing because "Devices have to be sold as personal, beautiful toys that sit squarely in the centre of your attention." p.433, [2]. The potential for wearables is also heavily compromised by the smartphone. Google Glass was presented as a new way to engage with computing, but apart from being a massive mistake in terms of understanding how people outside the Bay Area saw technology 2 , why use something like Google Glass when most of the functionality is already on your beautiful smartphone? The Apple watch of course requires an iPhone to work. Do you really think Apple want to sell a product to replace the iPhone? Buy another product to go with your smartphone sure, make sure both have to be up to date and you have even more reasons to throw out a 2 year old phone, but replace? Are you crazy? Meanwhile the smartphone is likely to subsume the credit card, audio storage 2 Sorry Google is not cool anymore. devices, in car entertainment, sat navs, and with the right peripherals fitness devices. A lot of designers implicitly understand the danger of the smartphone gobbling up anything new they design. With a significant number of project intentionally not using an app to realise the design objectives. For example the datacatcher project [7] where bespoke technology was manufactured rather than sticking some software on a smartphone. The smartphone is the new QWERTY keyboard, its going to be around for a long, long time. --- Conclusion So the world will move onwards and no one will care how many Facebook posts you made, or what you retweeted, or how groovy your choice at Spotify. You will get old and you will die. The data you generate over your life staring at your beautiful little technological mirror will be gobbled up by machine learning algorithms dedicated to maximising profit. Currently the dominant response to this within the HCI community is to make a prettier mirror. This is in direct contrast to the many researchers in the humanities producing incisive comment (if in a rather wordy and over florid style for us engineers) on modern technology. We acknowledge that the CHI community increasingly draws upon literature, the humanities as well as the social, political and communication sciences in its efforts to understand the current-and future -societal impact of interactive technology. However, these efforts are all too often relegated to the alternative venue of alt.CHI (for example see Kirman et al [15], Baumer et al [4]) or squirreled away as sexy sounding -but all too niche -design fiction workshops (for example see Linehan et al [16]). In perhaps the most relevant main track CHI paper to our rant Thus, in the context of the CHI 2016 theme, CHI4Good 3 with the focus on the "under-served, under-resourced, and under-represented", we hope this paper may encourage a few CHI attendees to read these commentaries and perhaps incorporate or cite them in their subsequent research output. We hope that our underlying political position may provoke engineers who disagree with us to do so openly. Politics, is after all, very much about debate. However, this so called neutral, apolitical position of HCI in the face of massive potential social upheaval and change is just not tenable. We may not be able to do much about the social impact of our technology, but if we can't then who can? The paper draws solely on a Western understanding of technology; the smartphone is portrayed as taking shape through two single bodies: the (Apple) industrial designer and the user. The laboring hands that assemble devices for consumption on a factory floor somewhere in Asia or Sub-Saharan Africa are rendered as invisible as these regions' designers. "The smartphone rivals the personal automobile as an expression of the self," the paper concludes. The comparison with the automobile could have been productive, if the authors had followed through; the making of the car and the mobile phone unfold not only through the making of consumers, but also drastic restructurings of work from Fordism to outsourcing, automation and digital labor. Just as the car haunts the American dream of middleclass, so the mobile phone haunts the knowledge economy and the idea that information technology would lead to the elimination of the factory. The authors feed into what they critique: a dominant view of tech innovation that equates it with Silicon Valley, masculinity, and Western capitalism. The paper itself is not a critique of HCI but highlights why so much of HCI fails to engage its critical turn; because it's easy to launch one critique after another. By ignoring prior work one can more easily stake out new territory: the person who brought Lacon to HCI, the paper we now need to cite when we write about smartphones. The sensationalism of the rant will generate conversations at the conference much like a Fox News headline, a mode of "scholarship " that is unlikely to have the kind of impact in education, technology and society that we should have as the technical and social make each other in ever more complex ways. --- Commentary For alt.chi paper

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Overrepresentation of Students from a Migrant Background in Special Education: Promoting Inclusive and Equitable Education

This study analyses the overrepresentation of students from a migrant background in special education in the stage of primary education, in the region of El Campo de Gibraltar (Southern Spain). This phenomenon poses significant concerns in terms of educational equity and discrimination, as well as questions about the possible underlying causes. It was decided to address this issue from a qualitative methodology through semi-structured interviews with 16 educators of educational centres that have a significant number of students from a migrant background. The results show the need of educators for specific training in attention to diversity. Likewise, many migrant families come to Spain due to the lack of adequate attention that their children receive in their home countries. Lastly, language and cultural barriers were identified, which allow for biased assessments and subjective decisions that result in the referral of students from a migrant background to special education from a multidimensional perspective. Therefore, it is fundamental to provide training to professionals, overcome the language and cultural barriers and ensure that the necessary resources are available, thus guaranteeing an inclusive and equitable education for all students, regardless of their origin.

Introduction The overrepresentation of students from a migrant background in special education constitutes a phenomenon of special interest that refers to the demonstrated tendency among students from a migrant background to be identified and placed in special education programmes at disproportionately higher rates compared to their native peers in the education system [1,2]. In the field of education, this phenomenon has been international [3,4]. The case of the USA is significant, as this is one of the most recurrent research topics in the last fifty years [5,6], since Dunn [7] highlighted the overrepresentation in special education of not only migrant children, but also children from social minorities and non-middle-class family environments. However, in Spain, the phenomenon of overrepresentation has received rather insufficient attention, despite the important migrant movements recorded, especially in the south, and in spite of the warnings given already in 2005 by the European Monitoring Centre on Racism and Xenophobia [8] about the large number of students from a migrant background in special education centres in Europe. The phenomenon of overrepresentation of students from a migrant background and students from minorities in special education poses significant concerns that cannot be ignored, as they affect Human Rights and Children's Rights, which are related to educational equity, social justice and inclusion, and these concepts are strongly related to each other within a desirable culture of peace in educational centres, as has been recently stated by Añaños et al. [9]: "The movement for a culture of peace and non-violence [. . .] conceives peace as a construction, as a project that concerns all citizens. The ingredients to achieve this are: democracy, dialogue, solidarity, justice and a spirit open to difference and diversity. The latter are the ingredients of inclusive education in schools, where educational work is an instrument of transformation" (pp. [24][25] In this sense, and within this context, the aim of this study was to analyse the phenomenon of overrepresentation of students from a migrant background in special education centres, specifically in the stage of primary education, in the region of El Campo de Gibraltar (Southern Spain), which is an area characterised by the arrival of an important migration flow. --- Inclusive Education to Transform Education and Society The United Nations Convention on the Rights of Persons with Disabilities [10] underlines the importance of the full and effective inclusion of people with disabilities in all aspects of life. This convention establishes fundamental principles that advocate for non-discrimination, equal opportunities and respect for human diversity. Similarly, it recognises people with disabilities as full rights-holding individuals and promotes their active participation in society. Within this framework, inclusive education emerges as an essential objective, aiming to guarantee an equitable access to education for students with disabilities in conventional schools [11,12]. However, this goal cannot be met in the short term, as it implies a process of evolution and development that requires time. Studies reveal that inclusive education not only contributes to the social development of all students, but it also improves educational opportunities as a whole [13]. Additionally, it promotes understanding and tolerance, playing a key role in the eradication of prejudice and discrimination against students with disabilities. Studies such as that of Achamrah [14] demonstrate that students with disabilities at conventional schools reach high performance in both the academic and social scopes compared to their peers at special education centres. This perspective finds consensus in the belief that the education of students with disabilities can be easily adapted to the general curriculum. Therefore, it is obvious that most students with disabilities do not attain an optimal progress in their education when they are isolated, thus emphasising the importance of inclusion as a means to ensure the full exercise of their right to education [15]. Therefore, it is considered that inclusive education not only represents a fundamental right supported by international agreements, but it also stands as a means toward a fairer and more equitable society. To achieve the full inclusion of students with disabilities in conventional schools, it is essential to implement inclusive policies and provide the necessary training and resources for teachers to create a welcoming and enriching educational environment for everyone, regardless of their differences. This approach not only benefits students with disabilities, but it also enriches the educational experience of all students and promotes greater understanding and tolerance in society as a whole [12]. --- Overrepresentation of Students from Ethnic Minorities in Special Education Centres Diversity in the classroom, in terms of cultural origin, language skills, or disabilities, is an increasing reality that educators must face [16]. Inequality in the educational success of students from a migrant background of ethnic minorities persists as a serious problem [17,18]. These students have a greater representation in special education compared to their Caucasian peers [19], which is a concern that has prevailed for decades [7,[18][19][20]. This overrepresentation in special education centres demands immediate attention and action [21]. With the aim of improving the success rates of these students, it is essential to implement programmes that promote early intervention, respect the different cultures and address the specific challenges of the latter [22]. In Spain, special education is governed by Organic Law 3/2020, also known as the LOMLOE, which establishes the structure and services for students with special educational needs (SEN). Since each group of students has specific characteristics and needs, which require adequate curricular adaptations [23], the LOMLOE emerges as a legal framework that sets measures of attention to diversity, curricular adaptations and specific resources to guarantee an inclusive education. For a student to be referred to this system, she/he must have gone through a process of identification and valuation of her/his educational needs by competent professionals. However, the decision of referring the student to a special education centre is jointly made by parents, teachers and professionals. Although the ultimate goal is to benefit the student, there is some criticism of the referral of these students to special education systems, as it can lead to the segregation of the students and the stigmatisation of their educational needs, thereby limiting, for instance, their opportunities to interact with peers without disabilities, and thus affecting their social inclusion [24,25]. Therefore, educators must be ready to attend to different needs and capabilities, since classroom diversity demands a constant adaptation of the pedagogical strategies. In this sense, it is necessary to provide specific and adequate training to educators, in order to guarantee that they can attend to diversity, especially in centres with students and families of particular characteristics [26][27][28]. In the case of students from a migrant background with disabilities, they often face unique challenges, such as language and cultural barriers. The current lack of diversified training makes it urgent to develop specific training in each educational centre, adapting it to their realities [29]. Consequently, specific training may help educators to effectively respond to these needs. This fact is not only necessary to guarantee equal opportunities, but it also contributes significantly to improving the academic performance and general wellbeing of all students, in general, and migrant students with disabilities, in particular [30]. In turn, language barriers represent a significant challenge for students from ethnical minorities in special education [31,32]. These barriers are often mistaken for learning difficulties, while the actual problem lies in a lack of understanding of the language [33][34][35]. The monolingual perspective of schools may influence the evaluation and support of these students, contributing to the problem of unequal representation [1]. To address this, it is crucial to adopt a holistic and intersectional approach, promoting cultural sensitivity and early intervention strategies [17]. Moreover, families, educators and health professionals must collaborate with each other to provide adequate support to the students [18]. Consequently, to fight the disproportionate representation in special education, it is fundamental to adopt culturally responsive educational systems that value and use the culture, language and experiences of all students [36]. This requires a profound transformation in the assumptions and practices of the educational structure, from classrooms to decision making in the school system [37]. Collaboration and transforming change are essential for the attainment of a more equitable education system that receives cultural diversity. --- Situation of Students with Special Educational Needs from Morocco Although the intersection between cultural diversity and special education has not been thoroughly explored in the Spanish context (where this study was conducted), the topic of migration received considerable attention in the 1990s [38]. From the mid-1980s, the economic growth in Spain led to an increase in the number of migrants who settled in this country, resulting in a population of migrants that represents 14% of the total population of Spain. Thus, during the 2000s, Spain emerged as a relevant destination for international migration. According to the data provided by the Spanish Institute of Statistics, in 2021 [39], 5,375,917 migrants lived in Spain, of whom 775,936 were from Morocco, representing 14.4% of the migrant population, i.e., the highest percentage of migrant citizens. Specifically, the Report on the Integration of Foreign Students in the Spanish Education System [8] states that, in the education scope, Spain has 30% of students from a migrant background from Africa, followed by the European Union (24%) and Latin America (21%). In the academic year 2021/22, a total of 882,814 migrant students were registered, representing 11% of the total body of students and almost 15% of the total migrant population in Spain. Regarding special education, in the academic year 2020/2021, 5135 migrant students were registered in public and private educational centres in Spain, of whom 1154 students were in Catalonia, 934 in the Community of Madrid and 670 in Andalusia [8]. These data indicate a significant increase compared to previous years, underlying the importance of understanding the migratory phenomenon between Spain and Morocco [40]. Two of the factors that can be identified in the migration of Moroccan families in Spain are [41]: (1) academic training and (2) the educational attention given to their children. During the last two decades, the education system of Morocco has faced a series of significant challenges that have led it to the limit of its capacity [14,42]. Moreover, the academic level of Moroccan migrant students is notably lower than that of Spanish students, and even that of the rest of the migrant community [38]. In this sense, and according to the National Immigrant Survey Report [43], 57% of individuals aged 16-64 years had not completed primary education (in contrast with 29% of all non-community migrants and 20% of migrants born in Spain), and only 3% had completed higher education (compared to 13% and 19%, respectively). Measures such as the Spanish Letter of Education and the Emergency Plan were developed to correct the deficiencies of the Moroccan education system [42]. However, despite these efforts, the results obtained to date appear to have been insufficient. This situation is demonstrated in the disproportionate representation of Moroccan students in other countries, as is the case of Spain. Moreover, although different factors have been reported to contribute to this disproportion, little effort has been made [44,45] to place these factors in the context of broader social and sociological phenomena, such as the cultural construction of disability, categories of disability and conceptualisations of individual difference. In addition, the challenges identified in the communication processes due to the language and cultural differences may, in certain cases, hinder mutual understanding [31,38,46,47]. Due to the scant and outdated literature on this topic, we consider that this study is very relevant, not only for the knowledge generated, but also for the new research lines that can be developed from its results, which are necessary, real and up-to-date. Thus, with the aim of contributing to the findings of other authors, the aim of this study was to analyse the causes of the overrepresentation of students from ethnic minorities (including both students born outside of the study country and students born in the study country with a migrant family background), mostly Moroccan, in special education centres in the region of El Campo de Gibraltar (Southern Spain). The following research questions guided the analysis: --- • What is the experience and training of teachers and specialists who work in special education centres in the region of El Campo de Gibraltar? --- • What are the main reasons that lead families to migrate and school their children in a different country? --- • What barriers do professionals identify with the families during the schooling period of students from a migrant background? --- Materials and Methods The present study is framed within the project entitled "Study on the disproportionate representation of students from a migrant background in special education centres in the province of Cádiz" (MigraNEE Cádiz), funded by the University of Cádiz-Convocatoria Proyectos Puente (REF. PR2022-056). The project analyses the different education stages (primary education, secondary education and basic vocational training); however, the data presented in this study are specifically focused on the stage of primary education. The aim of the present work was to analyse the overrepresentation of students from a migrant background in special education, specifically in primary education, in centres of the area of El Campo de Gibraltar (Southern Spain). To this end, a qualitative methodology was followed, based on the interview technique. This study was conducted from an ecological-cultural and inclusive approach [48,49], justified by the need to know and delve into the different discourses provided by the participants included in this investigation. Thus, with the use of thorough interviews, the aim was to generate knowledge through the voices of those involved in this phenomenon, with the participation of the community. --- Participants A total of 16 interviews were conducted in two special education centres, an early childhood and primary education centre and an Educational Guidance Team (EGT) of the area. The anonymity of all participants and educational centres of reference was guaranteed throughout the process. Table 1 shows the final sample. When selecting the educational centres, it was necessary to establish a profile of their students and families who met the characteristics of this study. Consequently, the selection of participants was based on the following criteria: --- • Education centres with a larger number of students from a migrant background with disabilities compared to other centres (this information was provided by the counsellors of the EGT); --- Instrument For the gathering of information, two ad hoc semi-structured interviews were designed, based on relevant questions about the profile of the educators, the situation of the students and their families and aspects that may explain the phenomenon of overrepresentation of students from a migrant background in special education. The interviews were revised and piloted by the research team of the project. After making the proposed changes, the script of the interviews was revised and the final changes were made. The interviews were designed inductively, with open-ended questions. Individualised interviews were developed for the counsellors of the EGT, the principals, the teachers and specialists in therapeutic pedagogy (TP) and hearing and speech (HES), and the social integration technician (SIT). --- Procedure To access the potential participants, the EGT of the area was contacted, and the nature and goals of the project that encompasses this study were presented to the members of the EGT. Their collaboration was requested, as well as establishing contact with the centres that met the characteristics of this study. Once the information of the centres was obtained, these were contacted, agreeing to a date and time for the interviews, taking into account their availability. Each participating group had an interview script specifically adapted to it, with approximately 40 min each. The interviews were conducted individually and in groups, face-to-face, and they were guided by the members of the research team. At the beginning of each interview, the participants were asked to provide their informed consent to have their conversations recorded, in order to gather every detail, notifying them that these would only be used for academic purposes, guaranteeing their confidentiality and anonymity. Lastly, all interviews were transcribed. --- Data Analysis Based on the data analysis systematisation model of Miles and Huberman [50], after gathering the data and transcribing the interviews, the information was reduced. This process consists in "selecting, focusing and abstracting the raw data into units of meaning, known as content categories" ([51], p. 358). Regarding the categorisation of the content, Rodríguez et al. [52] pointed out that this process implies "judging, valuing whether certain units can or cannot be included in a certain code, and making decisions in that respect" (p. 210). Taking into account the indications for this process, from the present study, a code was assigned to each unit of meaning; each of these codes refers to the categories in which they are included. This coding process was carried out inductively, thus the categories emerged from the testimonies of the participants. Once the coding process was performed, three general categories were defined, which refer to the professionals who had been interviewed, as well as to the information they provided in relation to the students and their families. Likewise, subcategories were established for each of the categories identified. Table 2 shows the categories and subcategories extracted from the analysis of the interviews and their corresponding codes. Language LIN Barriers that appear due to the existence of different languages between the school and the family. --- Communication COM Difficulties in the communication process between the school and the family. --- Cultural CUL Differences in the reference culture between the school and the family. --- Conflict CON Situations of conflict generated by language, communication and cultural barriers between the school and the family. After performing the coding process, the text fragments that corresponded to the same category and subcategory were grouped, and the entire content was revised. Then, the main ideas were synthesised, with the aim of presenting them orderly and clearly in the results. Lastly, textual quotations from the different testimonies of the participants were extracted to illustrate the results obtained in the present study. To perform the analysis of the data extracted from the interviews, the NVivo 12 software was used. --- Results The results are presented in three sections that analyse, mainly, the key elements of the overrepresentation of students from a migrant background in special education in the stage of primary education. Firstly, the previous experience of the education professionals is presented, as well as the initial and continuous training received in terms of attention to diversity and inclusion. Secondly, we show the motives that led the migrant families to migrate to Spain with their children. Lastly, this section addresses the main language, communication and educational barriers that the participants identified between the educational centre and the migrant families. --- Experience and Training of the Professionals That Attend to Migrant Students with Disabilities in the Educational Centres The professionals who work in the participating centres had certain experience in the diagnosis and detection of educational needs. They are teachers who had received specific initial training to attend to diversity and educational inclusion: 1. Special Education; 2. Physical Education; and 3. Therapeutic Pedagogy. All participants had received continuous training on attention to diversity and inclusive education. Likewise, a SIT was also interviewed, who also had a Bachelor's Degree in Primary Education and experience in centres with migrant students. However, this teacher did not mention any specific initial or continuous training on attention to diversity. "I began with social education. Then, I continued with psychopedagogy, teaching with pedagogical therapy, and a master's degree in early intervention. Finally, I entered an early intervention centre in Malaga as an interim, and that's the training I have regarding education". (C3) "Afterwards, I studied conflict resolution... but just a little bit. Master's degrees are poorly guided... at least in my experience... to work with this type of student". (TP1) Secondly, the participants stated that they had received no specific training with regard to migrant students. They highlighted the need to acquire knowledge in this scope (language, conflict resolution, etc.) due to the great presence of migrant people. "Generally, few courses related to migrant students are offered, and these are focused on teaching Spanish". (TP3) "Not much, really. Last year I had some trouble, because it was my first year with... most of my students were migrant students, and I received help from my colleagues in the centre. But regarding training, I would say I barely have any; there was some at university during my degree, but I don't really remember any of that". (TP2) Thirdly, the participants pointed out the lack of specialised staff to attend to the students and families with different languages, stating that translators are needed in centres with a large presence of Arabic students (Spanish area of the Strait of Gibraltar). "The language specialist comes once a week. Thus, with so little time, this specialist can't work adequately with these students, and their tutors can't be counselled about working with them. In fact, the work with the language specialist begins in Year 4 of primary education". (TP3) "We need some sort of resource, such as a translator, in these centres where there is a high percentage of migrants". (PT3) --- Reasons Why Families Migrate from Morocco to Spain: The State of Students from a Migrant Background When They Arrive in Spain Most of the students registered in the participating centres migrated from Morocco to Spain due to the scant or null educational attention that their children receive in their home country. Most of the students are Maghrebian and, in their home country, many children with disabilities are not treated in schools; in some cases, they are attended to in associations. However, their educational needs are not covered in any case. "The thing is that, in their country, mainly Morocco, they are extremely marginalised, and they try to bring them here so that they receive the attention they need". (TP2) "A person living in Morocco, for example, with no resources for their child, after visiting associations and seeing that their learning does not improve, eventually will search for whatever there is, wherever that is... if you gotta go to France, you go to France... if you hear there are resources in Cádiz, then you go to Cádiz". (SIT) In the case of Spain, the participants indicated that these families not only find that their children are schooled in special education centres in the mixed or pure modality, but they also receive the appropriate curricular adjustments and implementations free of charge. This is another reason why families decide to leave their home country, in some cases with neither a job nor residence, simply to ensure that their child is attended to. In other cases, they move to the homes of relatives who live in Spain, and then look for housing. "[...] They arrive here and the centre gives them everything, because specific centres are free of charge for all children. They have specialists, physiotherapists, lunch room, transportation... they have everything; and their children are attended to". (C8) The participants also highlighted that most of the students arrive without a previous diagnosis or with the wrong diagnosis. Therefore, when they arrive at the Spanish educational centre, the evaluations and diagnoses are initiated by the different teams of specialists, resulting, in some cases, in incongruent assessments. Furthermore, with regard to the proportion of Spanish and migrant students in special education, although the participants did not provide exact data, they mentioned that an increasing number of migrants are referred to special education. "In the case of students from a migrant background, they sometimes come with the wrong diagnosis, and the counsellor wouldn't establish a totally different diagnosis; even the coordination with social services is poor, especially in Year 2 and Year 3 (primary education), where I have the most students". (TP2) "I didn't count them... I don't know how many they are, but I know that there is one in every classroom. In fact, there is an increasing number of them in the classrooms". (HS1) --- Main Barriers Identified between the Education Professionals and the Migrant Families The participants underlined that there are numerous barriers in the schooling and educational process of students from a migrant background. Firstly, barriers such as language and the migrant parents' lack of knowledge hinder communication and their counselling. Similarly, there is a lack of willingness in some migrant families to adapt to the culture and learn the language. In some cases, this barrier makes it difficult to establish an accurate diagnosis of the needs of the students. "But then, if you can't ask the children questions, if you can't interview them, if you can't more or less see their traits... for example, the girl we have in the specific classroom was diagnosed with ASD, but she has characteristic traits of Down syndrome. It's very difficult to make a correct diagnosis". (SIT) However, the participants mentioned that they use diagnostic tests focused rather on visualising the student than on the language. Nevertheless, the interviews with the tutor and the parents and the observation of the child in different contexts are affected by language; therefore, the language barrier was identified as an important limitation in the evaluation and communication of the results with the parents. "When they just arrive at the centre or are very young, it is very difficult due to their lack of knowledge of the language and their lack of understanding". (TP3) The participants usually faced this difficulty using visual tools, requesting help from translators, associations or some relatives living in Spain who knew both languages. "They always come accompanied by a relative living here who knows both languages and translates for them, or they may come with associations with people who know Arabic". (C8) Along with the language barrier, the participants also pointed out the cultural barrier. In this sense, migrant parents are usually more reluctant to refer their children to early intervention. Some of the participants identified the stereotype of gender as a possible barrier that may limit the diagnosis and impartiality. Some students may show distrust or pay no attention due to the gender of the professional, although the participation and attitude of the parents with centres is positive, showing gratitude for the treatment received. "It is very visual, exactly. Many pictograms, and that, in the end, is a universal language, right? But, with the families, we sometimes have problems. In some cases, none of the two parents speaks Spanish, they don't understand well... In many cases, the mothers attend the tutorials less frequently, and the fathers are usually the heads of the families...". (HS1) "For example, last year, in secondary education, I observed this stereotype toward women; students aged 13, 14 and 15 years who literally told me 'you're a woman, what can you say about this?' When I evaluated them, they didn't really pay attention to me, because I'm a woman. They have that rooted in them. Even when some mothers attend, if the father is not also present, they don't want to listen to me". (C1) Although it was reported that some families are reluctant to follow the guidelines provided from the centre to attend to the needs of their children, in general, the participants stated that the families usually engage with the school and are very grateful for the treatment, help and education received from the education professionals and the centres. "Yes, they usually collaborate in most cases [...] moreover, they are often very grateful for the centre and all. They show respect toward the centre, us and our culture. They are collaborative people". (Pri1) "Yes, they are very grateful for having their children in the centre. They are very happy". (C8) --- Discussion Through interviews with different educators, the results of this study help to improve the understanding of the overrepresentation of students from a migrant background in special education, showing the formative situation of educators who are in charge of attending to the needs of these students. Similarly, the results also help to understand the motivations of the families to migrate to Spain and the impact of these migratory phenomena on the educational centres. Moreover, the results allowed identifying both language and cultural barriers between the different agents present in this context, students and families, which may lead to biased evaluations and subjective decisions made by education professionals, resulting in the referral of students from a migrant background to special education, thereby favouring the overrepresentation of students from a migrant background in special education [6,21,33]. Regarding the first research question, about the experience and training of teachers and specialists in special education centres, specific training on inclusive education is important for professionals who work with migrant students with special educational needs. In this sense, the experience and qualification of counsellors and SITs play a crucial role in the quality of the education that is provided to these students. However, there is a lack of specific training on attention to diversity, especially in the case of SITs. This underlines the need to invest in the professional development of educators to guarantee that they are adequately prepared to cover the needs of this group of students. Previous studies have reported this situation, highlighting the lack of training among professionals and of a clear profile that attends to the needs that are present in their context [1]. The study of Arroyo and Berzosa [28], among the main problems in educational attention to migrant students, identified that the training received by the teachers is homogeneous, without a specialised training that considers the needs and characteristics of their students, as well as the specific situation of each centre. This shows differences in the training of professionals, especially in terms of attention to diversity. In some cases, this lack of specialised training contributes to the exclusion of students from a migrant background with disabilities. In this sense, it can be asserted that the homogeneous training of educators reflects a dynamic of institutional power that does not adequately recognise the specific needs of these students. The results obtained in the present study reveal an important challenge in the education system, showing the urgent need for the competent administration and institutions to develop and implement specific actions that facilitate the training of educators in addressing the complications associated with the diversity of students from a migrant background with disabilities. Moreover, it is necessary to develop specific training in each educational centre, adapted to the real contexts and far from the homogenising propositions that come from educational administrations [27]. In regard with the second research question, which tackles the reasons for migrating and the impact of the latter on education, this study reveals that most of the migrant families from Morocco moved to Spain to find an adequate educational attention for their children with disabilities [14,43]. This shows the importance of guaranteeing that the education systems in both countries provide adequate support and resources to these students [39]. Moreover, these results highlight the need for effective collaboration between social and educational services to facilitate the successful transition of these students and their families. Thus, schools must lead this transition process toward a new context and a new education system, ensuring that both students and their families can thrive in this new environment [28]. Furthermore, this requires the participation of school associations that favour aspects such as intercultural mediation between the families and the schools. Lastly, to address the third research question, which refers to the barriers identified between professionals and families during the schooling period of the migrant student (i.e., language and cultural barriers), the participants identified these as significant challenges in the interaction with the migrant families. Previous studies have already identified some of these barriers, such as language barriers and family-school relations [34][35][36]50], in line with the results of the present study. The lack of mastery of the Spanish language among some families hinders communication and mutual understanding. This underlines the need for implementing effective communication strategies, such as the use of visual tools and the participation of translators, to overcome these barriers [45,46]. In addition, the participants mentioned that the cultural barrier may influence the way in which parents interact with the education professionals and how they perceive the diagnoses and recommendations [6]. Despite the barriers identified, the interviewees pointed out that most of the migrant families show a collaborative and grateful attitude toward the school and the education professionals. This shows the value that these families attribute to the education of their children and the importance of establishing relationships of trust and respect between the schools and the families [19]. The results of previous studies are in line with those of the present work, as is the case of Santos and Lorenzo [51], who reported that, in general, the participation of Moroccan families is lower than that of other families whose mother tongue is Spanish, although they show high levels of satisfaction with the tutor. In view of this situation, it is necessary to improve the training of professionals, in order to help them understand the language and cultural diversity of students from a migrant background. The lack of specialised professionals reflects a structural gap that must be addressed in order to guarantee a specific and effective support for migrant students with disabilities. In this sense, the demand for greater presence of trained and qualified professionals reflects the need to recognise and approach language and cultural diversity in contexts with significant migration. Considering that it is a challenge for the professionals of these centres to master all the languages of the students [6,53,54], it is fundamental to find alternatives that respond to this problem. There are experiences in which the educational community has engaged in a common project to learn the language of the students through extracurricular workshops [55]. Regarding the specialisation of teachers, it would be interesting to promote specific actions in teacher training centres (TTC) to attend to the realities of this type of centre [1,28]. The participants also demanded a greater presence of qualified professionals, especially in contexts characterised by migratory movements, as is the case presented in this study. The role of the teacher in temporary language adaptation classrooms (ATAL in Spanish) for migrant students is important for ensuring a specific attention to migrant students and their families. Therefore, a larger number of professionals of this area are required, especially in regions with a significant percentage of students from different cultures and languages [6,27,37]. The dates obtained here on the overrepresentation of students from a migrant background in special education in this study has also been reported in different countries other than Spain [8,33], motivated by the existence of biased evaluations and subjective decisions made by educators [1,19,20]. However, the factors that contribute to this phenomenon are complex and multifaceted, and no resolution has been developed to fully address it [6,7,19,21,45]. Therefore, it is necessary to apply an integrated approach that includes the culturally sensitive training of educators, the implementation of inclusive teaching practices, the active participations of the families and the collaboration between schools, communities and governmental agencies [6,38]. Lastly, we propose recommendations and future research lines on this topic. In this sense, the study provides a solid foundation for future work and recommendations for educational policies. It is crucial to address the divides in the training of professionals, especially for SITs, and to promote the continuous training on inclusive education and attention to diversity. Furthermore, it is fundamental to work on the development of effective strategies to overcome the language and cultural barriers, including the access to translation and cultural support services. Finally, this study underlines the importance of an inclusive approach focused on the student in education, recognising and respecting the diversity of the students, regardless of their origin or condition, as well as their educational needs [12]. This approach not only benefits migrant students with disabilities, but it also enriches the educational experience of all students and contributes to building a fairer and more inclusive society [11,13]. --- Implications and Proposals for Improvement With regard to the main implications and propositions for improvement derived from this work, it is important to promote the participation of the educational centres with social entities that can provide services to improve the transition and adaptation of students from a migrant background, such as academic support, language reinforcement and intercultural and leisure activities. This allows both students from a migrant background and their parents to socialise with other families [56]. Another practical recommendation to improve family integration would be to establish a mentorship programme within the educational institutions [57]. The aim is to develop a continuous feedback process of support and counselling between the minor and the mentor; the latter can be a family that had already gone through a similar situation, or a native family. This would allow attending to the needs of the migrant family in terms of integration into the education system and into society. Finally, it would be beneficial to organise training and sensitisation sessions within the school [58,59], addressing interculturality with the entire educational community, in order to bring the different cultural realities closer and facilitate the transition and adaptation of migrant families. --- Highlights --- • The overrepresentation of students from a migrant background in special education centres is due to different factors; --- • The professionals of these centres are not trained to specifically attend to migrant students; --- • The lack of specialised staff to attend to non-Spanish-speaking students and families contributes to their overrepresentation in special education centres; --- • The lack of specific training among professionals may result in wrong diagnoses and biased evaluations; • Families migrate from Morocco to Spain in search of adequate and specialised educational attention for their children; --- • To address overrepresentation in these centres, it is essential to guarantee the availability of support resources and promote intercultural collaboration in the education system. --- Data Availability Statement: The authors state that the data explored in this study are completely original and have been analysed by a team of experts in the area, including the authors of this article. This study is framed within a competitive research project that received funding. With the aim of ensuring the confidentiality of the participants, the data have not yet been disseminated or shared in any repository. In conclusion, all the information that supports this study will be made available to the public when this article is published. --- Institutional Review Board Statement: The study was conducted in accordance with the Declaration of Helsinki. Informed Consent Statement: Informed consent was obtained from all subjects involved in the study. --- Conflicts of Interest: The authors declare no conflict of interest.

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Six Tips for Giving Good Health Care to Anyone With a Cervix.

Cervical cancer is most frequently diagnosed in patients ages 35 to 44, but risk persists as individuals age. Among patients who are regularly screened via the Pap test, cancer is rare and death rates have dropped dramatically in the United States. Nevertheless, access to regular screening can be difficult for transgender men (individuals assigned female at birth but with a male gender identity) due to misinformation, discomfort scheduling appointments, fear of being mistreated or of refused services, lack of insurance, and clinicians' lack of knowledge. This narrative explores 6 barriers to cervical cancer screening for transgender men and offers recommendations for eliminating cervical cancer inequality.

Need for Transgender Gynecological Care Death rates from cervical cancer have dropped dramatically in the United States due to the effectiveness of the Pap test in detecting cervical cancer, which has allowed clinicians to treat abnormal and precancerous cells. 1,2,3 Yet transgender men (individuals assigned female at birth but with a male gender identity) obtain cervical cancer screening less frequently and are less likely to be up-to-date on Pap tests than cisgender women (individuals assigned female at birth and with a female gender identity). 4 According to the 2015 US Transgender Survey, although transgender men are vulnerable to chronic undetected human papillomavirus (HPV) infections, only 27% report having had a Pap smear in the past year compared to 43% of women in the general population. 5 Barriers like the ones presented below may prevent transgender men from scheduling appointments and accessing life-saving screenings. First, however, I offer a personal perspective on the need for cancer screening. Testosterone Therapy and Pelvic Pain During the summer of 2006, I celebrated the completion of my first year on testosterone. Over the course of that year, I documented many physical changes as my body morphed from a female to male shape. I had undergone chest surgery (a bilateral mastectomy with nipple grafts), but I still had other body parts-uterus, ovaries, fallopian tubes, vagina, and cervix-that required screening typically marketed only to female patients. The last time I had had a pelvic exam and Pap test, I was 19 years old, and I was now turning 26. Although cervical cancer is most frequently diagnosed in patients ages 35 to 44, 1 it was important to me to schedule another exam, not only to make sure that my tissues were healthy but also to address my ongoing extreme pelvic pain. After initiating hormone therapy-in my case, testosterone-transgender male patients can experience cramping and pain that can last more than 6 months. 6 My pelvic pain had been ongoing day and night for almost 4 weeks. At the time, I didn't know that this was a common symptom of testosterone use, 5 so I was concerned. Although motivations and reasons for seeking gynecological care vary, in my case, I had dysphoria about my reproductive organs; I was tired of dealing with pelvic pain; and I was concerned about uterine, cervical, and ovarian cancer. (Please note that there is currently no evidence that testosterone therapy increases risk for ovarian, uterine, or cervical cancers among transgender men. 7 ) Not having a desire to retain my uterus, I hoped my exam would render me eligible for a laparoscopic total hysterectomy and an oophorectomy. If so, I would be joined by a low percentage of transgender men who have had a hysterectomy. In a 2015 survey that included more than 8000 trans male respondents, 14% reported having had a hysterectomy and 57% reported wanting one someday. 5 Barriers 1: Gynecological care for men. Scheduling an appointment for gynecological care, including a Pap test and pelvic exam, and then following through with the appointment can be emotionally difficult for transgender men. I wanted to see a clinician about my concerns, but I was afraid to call and schedule an appointment because I didn't know if anyone would take me as a patient. I'd had negative experiences with clinicians and staff in the past, so even if someone would see me, I was worried about how I'd be treated. I gained courage by having a female friend call her obstetrician's gynecology office and ask if anyone would see a trans man as a patient. The office responded, "We've never worked with a trans man before, but send him our way!" It was a relief to hear this kind of response in 2006, given the lack of clinical education and training in how to respond to transgender patients' obstetrics and gynecological needs. 8 This lack of training persists. A 2015 survey of obstetrics and gynecology clinicians found that 80% of respondents reported not having received training in transgender care during residency, but almost 89% reported that they would be willing to provide routine Pap tests for transgender men. 8 In my case, knowing the clinic was open to me, even if its staff didn't have experience, diminished my anxiety-a little. 2: Is the target population gender and gender identity inclusive? When I called the clinic to make an appointment, the receptionist sounded surprised to hear a man's voice ask for a pelvic exam. And as I walked into the clinic, I had to ignore that women was the only word on the sign. The door closed behind me, and I kept my head down as I approached the front desk. I wasn't sure how people would react to seeing a man in a waiting room full of women. I was relieved that the front desk staff greeted me with a smile and treated me like any other patient. 3: Gynecological clinical encounters with trans men. Transgender patients' positive experiences in health care settings increase the likelihood of their remaining compliant with recommendations, including for screenings. If you're a clinician or a staff member, the upshot here is that patients' first encounters could be their last if they feel terrible about what happened to them there. So, the first time a trans man patient has a Pap test, it is important to talk with him about the procedure, including speculum use, swab insertion, and total time it typically takes to complete a physical examination. Approaching patients using a trauma-informed care model can help alleviate transgender men's anxieties about having their body parts examined and their experience of dysphoria or discomfort. 9,10 Although I went to my appointment alone, I accompanied a transgender male friend to his and joined him in the exam room. While my friend was still fully clothed, the clinician reviewed his health history. She informed him that if he had discomfort with any of the language she used, he should let her know his preferred terms. Trans men might be uncomfortable with clinically accurate terminology associated with body parts, so when patients prefer different language, clinicians should mirror their language. Testosterone causes atrophy and dryness of vaginal tissue 6 ; for trans men or cisgender women who do not engage in penetrative vaginal sex, a speculum can be especially uncomfortable. My friend was extremely anxious about speculum insertion, due to never having had penetrative sex, so this particular clinician did well to assure him that she would use an appropriately sized speculum for his anatomy. Pediatric-sized speculums, however, are not always helpful, and over lubrication should be avoided. 10 The clinician continued to communicate each step she would take and described what my friend might feel. She then asked him to disrobe from his waist down. Upon completing the exam, she left the room to allow him to put his clothes back on and later returned to answer his questions. This was a positive encounter for my friend and also for me as an observer. This clinician became a trusted caregiver in our community of trans men, and we all began supporting each other in making and attending appointments. 4: Gendering and body parts. Another barrier to care that transgender men tend to experience, if insured, is receiving notice of denial of claims coverage by an insurer. Clinicians can help prevent this occurrence with clear billing communication. After an appointment, for example, a clinician should note the patient's gender in his health record and notify stakeholders that this might be different than what is on his insurance card. If gender markers, like pronouns or names, are mismatched for a gender-linked procedure, like a Pap test, or gender-linked body parts, like a cervix, it's helpful to trans men patients when clinicians explain to the billing department the organ-specific services rendered. Taking these steps might decrease the number of insurance claims that a trans man patient is denied. After my clinician determined that a hysterectomy would be the best treatment for my symptoms and concerns, I informed her that all of my documentation-including driver's license, birth certificate, and insurance card-affirmed my identity as a man. She stated that she would note specific organs present in my health record and submit forms for precertification to my insurance company. Although my procedure was precertified, 4 months later a postpayment audit flagged the claim due to my being a man, prompting my insurer to request a refund. My clinician helped me appeal by writing a letter noting the medical necessity of the service she provided to me, and the appeal was eventually approved. In my case, the clinician advocating for me increased my trust and desire to return for future care. 5: Inadequate lab results. Inadequate tests or samples are more common among transgender male than cisgender female patients, requiring return office visits and repeat screening. 11 Often, the lab notes list "inadequate sample," "atrophy," or "dysplasia" as a reason for abnormal or inconclusive results. Not wanting to undergo another exam, a trans man patient receiving such results might not return to a clinic but might remain concerned about the results. In order to decrease the odds of an inadequate test, clinicians should inform the labs they use that a patient on testosterone (which causes thinning of vaginal tissue) had a cervical swab and also note whether the patient is amenorrheic. 10 Taking these steps can decrease the chance of abnormal results, confusion, error, or sample disposal by the lab. For example, the tissue sample taken after my hysterectomy came back with a note about cervical dysplasia, but I didn't find this alarming because my clinician explained that my long-term testosterone use caused cervical epithelial atrophy, which can mimic dysplasia. 11 6: Sex practice diversity and risk awareness. Both transgender men patients and clinicians can be misinformed about screening guidelines and risks. Some trans men lack not only understanding of risk factors for HPV but also general gynecological knowledge. Some clinicians might assume that trans men are less likely to be at risk for HPV because they might also assume that trans men don't have penile/vaginal penetrative sex. This assumption is wrong. There are a wide range of sexual practices in which trans men might be interested, including penetrative vaginal, anal, or oral sex with partners who have penises that produce sperm. Minority stress 12 due to gender-related discrimination and victimization has a negative impact on health; alcohol use, a history of psychosocial distress, and a history of sex with men only are risk factors for sexually transmitted infections in trans men. 13 Anyone With a Cervix Transgender men need to see themselves reflected in data, research, and cervical cancer screening guidelines published in authoritative, reliable sources. When conducting research for this article, I noticed that many sources continued to use anatomical words and pronouns intended to apply narrowly to cisgender women only. 14,15,16,17 It is important to include trans men in cervical cancer screening recommendation language, for example, by stating clearly that screening is for women, transgender men, or anyone with a cervix. Patients who identify as trans men find it acceptable and preferable to test for HPV with self-collected vaginal swabs. 18,19 Clinicians should offer and provide self-collection swabs as an option to trans men patients, along with education about risks and benefits of HPV vaccination. Clinicians should also offer other forms of screening, such as urine tests for sexually transmitted infections, to increase the likelihood that trans men patients follow screening guidelines while being spared the discomfort of a pelvic exam. The more frequently trans men have positive experiences in gynecological health care settings when seeking routine screening, the more likely they will be to practice regular screening and illness prevention. While I no longer need pelvic exams, I still visit my clinician's office for hormone therapy monitoring and other health care because I have established trust and had positive clinical encounters. Everyone deserves equality in enjoying this level of quality and trust in their health care. --- Conflict of Interest Disclosure The author(s) had no conflicts of interest to disclose. The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA. Copyright 2020 American Medical Association. All rights reserved. ISSN 2376-6980

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The impact of community care services on older people’s psychological health: an empirical study in Liaoning Province, China

Background: Rapid population aging in China means it is imperative to establish a comprehensive care service system for older people. Currently, China is vigorously promoting the development of community care services for older people which should, ideally, focus on psychological health in addition to physical health. This study examined the impact of community care services on older people's psychological health. Methods: Survey data (n = 741) were collected from people aged 60 years and older in Liaoning Province, China, in which various community care services for older people were provided. Information was collected regarding the types of services provided (e.g., meal services, medical and social care), participants' demographic details (age, gender, economic circumstances, etc.), and their psychological health (e.g., loneliness, life satisfaction). The impact of the various care services on older people's psychological health was subsequently examined through the construction of a structural equation model. Results: Community care services for older people had a significant positive impact on their psychological health, with the most significant positive impact on cultural and sports activities, visiting and chat services, and emotional counseling. The impact of community care services on sub-groups of older people (e.g., those who were disabled, socially isolated and/or poor) was different.It is necessary to provide comprehensive and high-quality community care services, organize diverse cultural, sports, and recreational activities, provide differentiated and specific services for older people, and formulate corresponding service guidelines.

Introduction Since 2000 China has experienced rapid aging of its population and is a trend that is predicted to continue well into the future (1). According to the seventh national population census data, by the end of 2020, 18.70% of the population in China will be aged 60 years and older. The "Fourteenth Five-Year Plan" of the National Plan for the Development of the Aged Cause and the Care Service System clearly emphasizes the need to continue to expand the "balanced, reasonable, high-quality, efficient, urban and rural coverage of care services, benefiting the entire population. " At present, family pensions, community pensions and institutional pensions are the three main types of urban pension models in China, and a "9,064" pension service model has been formed (90% of the older adults live at home, 6% live in community, and 4% live in institutions). This shows that community care services play a crucial role in China's pension system (2). As an old industrial base province in Northeast China, Liaoning Province ranks first in terms of population aging due to the influences of industrial structures, economic levels, social culture and other factors. Since 2020, Liaoning Province has taken the lead in carrying out reform pilot work of community care services for older people in China. A series of policies and regulations have been promulgated, including the Regulations of Shenyang Municipality on Home-based Care Services. It has carried out reform pilot work of community care services for older people in 200 communities in nine cities, including Shenyang and Dalian, and formed a series of working models with demonstration effects. With the trend of aging, the health of the older population is of concern. Older people tend to suffer from more physical and mental diseases and are prone to psychological problems, inducing the risk of suicide (3). According to 2018 Report on Older Adults' Psychological Health in China, 95% of older people have different degrees of psychological disorders, and they are prone to emotional problems. In June 2019, the National Health Commission also pointed out that changes in living conditions, social relations and physical conditions associated with older age, such as the weakening of the body and the death of a partner, bring negative feelings of inferiority and worthlessness. If these feelings are not appropriately managed, psychological problems such as depression and/or anxiety may result. According to the World Health Organization, "health is not only the absence of disease or weakness in the body but also the physical, psychological and social integrity of a person. " The psychological health of older people is not only a medical and health problem but also a public problem affecting social stability and development (4). At present, child support, institutional care and community care services focus on meeting the survival and physiological needs of older people, while overlooking or neglecting their spiritual needs and psychological problems (5). Recently, the Chinese government has placed greater importance on the issue of the care of older people in policies, focusing on their living conditions, and demanding the improvement of the quality of care services to meet their diverse needs. However, while most policies tend to guarantee basic living needs, such as food, housing, and basic medical care, and emphasis on resource support for service institutions, there is a lack of support for psychological services. Similarly, current research on community care services mainly focuses on which service items should be established (6), how processes and quality can be improved (7), and how older people's satisfaction with services can be enhanced (8). However, there is limited research on the impact of community care services on older people's health, especially their psychological health, and there is a lack of investigation into the demand for services and service effectiveness, which directly affects the improvement and development of community care services. From this point of view, the psychological health of older people in China receives little attention but requires consideration. Given this, this study is committed to studying, within the context of actively promoting community care services for older people in China, whether the community can become the real spiritual home for older people, provide them with high-quality and convenient services, and thus positively impact their psychological health. An additional question was whether this impact differs for sub-groups of the population. This is an important issue affecting the construction and improvement of the community care service system for older people in China. This study explored the impact of community care services on the psychological health of older people using the research results of 200 community care pilots for older people in Liaoning Province. --- Literature review 2.1. Community care services for older people Population aging and the care of older people are social issues faced by all countries globally. Welfare countries have implemented models of community care for older people since the 1960s. In the UK, the Department of Health and Social Security (DHSS) proposed that "use community facilities and resources to provide long-term care and assistance for people in need of care in the community, especially the very vulnerable older adults ", and an important objective of community care services is to reduce loneliness and abandonment experienced by older people. Ayers and Lyman (9) emphasized the critical role of psychological counseling and emotional assistance in caring for older people. Connelly (10) divides the content of community care into four types, the first is life care (including home services, apartments, etc.), the second is material support (including providing food, tax relief, etc.), the third is medical support (including disease treatment, health care, etc.), and the fourth is overall care (including improving the living environment, promoting social participation, etc.). --- Definition of psychological health The World Federation for Mental Health (WFMH) defines psychological health as "developing one's mood into the best state within the range of physical intelligence and emotion that is not inconsistent with other people's mental health. " The World Health Organization (WHO) (2014) summarizes three characteristics of psychological health: "good personality, good ability to handle affairs, and good interpersonal relationship (11). " Wu (12) reported that as older people experience physical aging and social role changes, their psychological health also presents different characteristics, and attention should be paid to their cognitive abilities and adaptability. --- Measurement of psychological health In terms of psychological health measurement, early researchers mainly analyzed older people's psychological health from a single perspective of subjective psychological feelings. Siebert et al. (13) reported that loneliness, depression, subjective well-being and life satisfaction are sensitive indicators that can be used to quantify older people's mental health. Kozma Based on the research results of scholars from China and other countries, the measurement of the psychological health of older people using subjective emotional indicators only is limited. A comprehensive evaluation index system including loneliness, cognitive ability, life satisfaction and interpersonal activity participation as the main dimensions should be established. --- Interfering factors of psychological health of older people In order to fully understand the root causes of psychological problems and diseases of older people and improve their psychological health, scholars from all countries are committed to analyzing the factors that influence their psychological health, which can be roughly summarized into three aspects: physiological condition (sleep quality, illness, etc.), social relationships (family relationships, interpersonal relationships, etc.), and economic conditions (income levels, social security). Regarding physiological factors, Jorunn (19) studied the relationship between the ability to perform Activities of Daily Living (ADL) and loneliness in older people through structured interviews in a rehabilitation center, and concluded that ADL functions could reduce loneliness. Jacobs et al. (20) analyzed the relationship between physical health and loneliness in older people and found that those with physical dysfunction were more likely to feel lonely. In terms of social relationships, Wu (21) found that the social support of family, neighbors and friends affects the subjective well-being and mental health of older people by affecting their self-esteem, and reducing loneliness. Regarding economic conditions, Saber (22) reported that the level of economic income significantly impacts older people's happiness index. --- Methods --- Sample data sources The data for this study were derived from the results of a survey conducted by the Institute of Urban and Rural Community Construction of Northeast University in 200 community care service pilot communities in Liaoning Province from 2021 to 2023. The survey adopted a multi-stage stratified cluster sampling method and was aimed at people aged 60 years and older. Step 1: The sample size was determined to be 800 people by calculation; Step 2: The sample size for each city was determined on the basis of the size of the population in each of the 14 cities in Liaoning Province; Step 3: Sampling communities were identified using a systematic random sampling method; Step 4: Using cluster sampling method, six samples of older people in each community were randomly selected and asked to complete a survey. A total of 852 questionnaires were distributed, and 741 valid questionnaires were returned, yielding a response rate of 87%. The data have strong universality and representativeness. --- Variable selection and measurement Independent variables: community care services for older people. According to the relevant regulations of the Ministry of Civil Affairs and other departments, community care services for older people include eight elements: living care services, meal and cleaning services, medical and health services, visiting and chat services, emotional counseling services, emergency rescue services, cultural and sports activities services, and legal aid services. Values were assigned to each of service item for the purpose of analysis, with a value of '1' assigned if the community provided this social service, while a value of '0' was assigned if the service was not provided. Dependent variables: older people's psychological health. According to the measurements of psychological health in the literature review, this paper aimed to build a comprehensive and objective measurement index of older people's psychological health. Therefore, the four indicators of loneliness, cognitive ability, life satisfaction and participation in activities were selected to measure older people's psychological health. "Loneliness" is a sensitive indicator of psychological health with which it is significantly negatively correlated, and the higher an individual's psychological health, the lower the perceived loneliness (23). The question "Do you often feel lonely?" was included in the questionnaire which was answered using a 1-5 scale where "1 = always, 2 = often, 3 = sometimes, 4 = rarely, and 5 = never. " "Cognitive ability" refers to the ability of the human brain to process, store and extract information. Based on the Mental Health Scale for the Older Adults (Urban Version), this study designed seven questions that reflected seven aspects: memory, spatial recognition, learning ability, understanding ability, expression ability, calculation ability and reaction speed. Each answer was assigned the value of "1 = correct, 0 = wrong or unknown, " and the scores of the seven questions were added to compute a total score. "Life satisfaction" is a key indicator of older people's subjective well-being and Song et al. (24,25) showed that the life satisfaction index of older people could be used to reflect their psychological health status. Life satisfaction was measured by the question "Are you satisfied with your current life?" which was answered using a 1-5 scale where: "1 = very dissatisfied, 2 = dissatisfied, 3 = average, 4 = satisfied, and 5 = very satisfied. " "Participation in activities" belongs to the dimension of interpersonal communication, which is measured by the frequency of engagement in social activities. Scholars from all countries regard interpersonal activities as a measure of older people's psychological health. --- "Participating in activities" was assessed by the question "Do Frontiers in Public Health 04 frontiersin.org you participate in the following activities now?" including "music or dance, sports, playing cards or mahjong, communicating with friends, voluntary activities, and other outdoor activities. " The question was answered using a 1-5 scale where: "1 = not participating, 2 = not every month but at least once a year, 3 = not every week but at least once a month, 4 = not every day but at least once a week, and 5 = participating almost every day. " The answers to the six items were summated to compute a total score. Control variables: referring to the existing research about the factors that influence older peoples' mental health, data were collected regarding the participant's personal characteristics, behavior habits, economic status and family status, including age (1 = 60-65 years old, 2 = 65-70 years old, 3 = 70-75 years old, 4 = 75-80 years old, 5 = 80 and over), gender (0 = female, 1 = male), living conditions (1 = family, 2 = living alone, 3 = nursing home), marital status (1 = married and living with a spouse, 2 = married but not living with spouse, 3 = divorced, 4 = widowed, 5 = unmarried), physical exercise (0 = no physical exercise in the past, 1 = physical exercise in the past), disability (1 = no disability, 2 = mild disability, 3 = moderate disability, 4 = severe disability) and economic situation (1 = very poor, 2 = relatively poor, 3 = average, 4 = relatively wealthy, 5 = very wealthy). --- Empirical models 3.3.1. Confirmatory factor analysis In this study, four variables: loneliness, cognitive ability, life satisfaction and participation activities were used as indicators of "older people's psychological health. " In contrast "older people's psychological health" was a latent variable, which is the common part of the four measurement indicators -a common factor. In order to test whether the whole factor model was significant, confirmatory factor analysis (CFA) was conducted on the four indicators of loneliness, cognitive ability, life satisfaction and participation in activities to verify whether the factor load coefficient of "older people's mental health" was significant, and to verify whether the measurement of "older people's mental health" was valid. --- Structural equation model (SEM) As a confirmatory method, the structural equation model can explore the structural relationship between variables, and is widely used in psychology, sociology and other fields (26,27). In this study, the explanatory variable "community care service" was an explicit variable, and the explanatory variable "older people's psychological health" was a latent variable measured by four indicator variables: loneliness, cognitive ability, life satisfaction, and social activities. The structural model equation of community care services and older people's psychological health is shown by the formula (1): η α ζ = + + ΓX(1) The measurement model is shown in formula (2): y µ = + γη(2) In formula (1), η Is a latent variable, indicating older people's mental health; Γ Indicates the change of the latent variable after each unit change of the indicator variable; X refers to community care services that affect older people's psychological health, which are composed of living care services, meal and cleaning services, medical and health services, visiting and chat services, emotional counseling services, emergency rescue services, cultural and sports activities services and legal aid services; ζ Represents a random perturbation term. In the formula (2), y = (y1, y2, y3, y4) is a group of indicator variables for older people's psychological health. This study used four indicators: loneliness, cognitive ability, life satisfaction, and social activities; ε indicates the measurement error item (Table 1). --- Analysis of empirical results --- Descriptive statistical results Descriptive data and participants' characteristics are summarized in Table 2 which shows that the average score for loneliness was 4.03, indicating that respondents had a low sense of loneliness as a whole and do not feel particularly lonely. Cognitive ability is composed of memory, spatial recognition, learning ability, understanding ability, expression ability, calculation ability and reaction speed, and the average score was 6.52, indicating that respondents had high overall cognitive ability and normal intelligence. The average life satisfaction score was 3.88, indicating that participants were relatively satisfied with their current life as a whole and had a positive and optimistic attitude toward life. However, the average number of people participating in activities was 9.63, which indicates that participants had less contact with people and were not fully involved in various social activities. According to the social withdrawal theory, people's abilities will inevitably decline with increasing age, and they gradually lose their social roles, thus reducing social interaction and participation in activities. This view is consistent with the results of this research. In terms of community care services, the average value of each service is ranked from high to low as follows: meal and cleaning services, medical and health services, cultural and sports activities services, emergency rescue services, legal aid services, emotional counseling services, visit and chat services, and living care services, with the average value of 0.83, 0.57, 0.37, 0.28, 0.21, 0.17, 0.15, and 0.12, respectively. Overall, the service items and supply coverage of the existing community care services are seriously insufficient, with the focus on physical health and basic living needs while social and spiritual needs are overlooked. According to Maslow's hierarchy of needs theory, community care services should not only focus on the first level of physical needs and the second level of safety needs, but also focus on the third and fourth levels of social and respect needs. --- Model estimation results Before running the model, the data in this study were first tested for reliability using SPSS software. The results showed that the Cronbach's α of each study variable was above 0.6, indicating that the data had high reliability. Subsequently, AMOS software was used to draw a model path map and perform data operations, and after debugging, the model was optimized. The final output is shown in Figure 1. The fitting index RMSEA = 0.067 and SRMR = 0.039 indicates that the model fitness of the constructed factor model was good. According to the model estimation results in Figure 1, community care services have a significant impact on older people's psychological health with an impact coefficient of 0.72. The three services with the most significant impact were cultural and sports activity services, visiting and chat services, and emotional counseling services, with coefficients of 0.38, 0.26, and 0.22, respectively. This result indicates that within the community, the involvement of professional social workers and psychological counselors, carrying out diverse cultural and sports activities to enhance the social participation and communication circle of older people can enrich their leisure life, provide a sense of collective belonging and existence, and maintain a positive and healthy mentality. Visiting and chat services are a direct way to comfort people. Service personnel can play the role of relatives or friends of empty nesters to a certain extent and alleviate older people's loneliness through communicating with them. At the same time, due to personal, family, or neighborhood factors, older people are prone to suffer from depression and anxiety. Counseling services provided by professional psychological consultants can help older people reduce internal misunderstandings and distress and lower their risk of mental illness. In addition to these three items, the service items that ranked fourth to fifth in terms of impact were: meal and cleaning services and living care services. These service categories can improve the quality of life of older people, ensure that they live with dignity in their familiar community environment, thereby making them feel the meaning and value of life, and enhancing their life satisfaction. While the other three service elements -medical and health services, emergency rescue services and legal aid services were found to have no significant effects, and may even have a negative impact on older people's mental health. This is mainly due to the relatively short development time of the three services, which are still in the initial stage of development, insufficient experience of practitioners, high service costs, and insufficient coverage, resulting in a lower overall service level (Figure 2). --- Robustness check Considering that older people's psychological health is also affected by other factors, this study also added control variables to the following models (1) and ( 2), including age, gender, living conditions, and whether participants undertook physical exercise. The regression coefficients and significant changes in the models were evaluated to assess the robustness of the empirical models. In Table 3, Part A shows the estimated results of the structural model for various factors affecting older people's mental health, and Part B shows the estimated results of the measurement model, which is essentially consistent with the estimated results of the structural equation model. Part C shows the fitting indicators for the entire model, and of them, RMSEA<0.08, SRMR<0.05, and R 2 ≈ 0.7312, indicating that the overall fit of the model is good, and the empirical results are robust and acceptable. --- Heterogeneity analysis The data were further analyzed to assess heterogeneity and whether the impact of community care services on older people's psychological health varied according to whether they live alone, whether they are disabled, and their economic level. Table 4 shows the results of the heterogeneity analysis. Results showed that living care services have a differential impact on disabled versus non-disabled older people, and have a significant positive impact on the psychological health of disabled older people, but no significant impact on non-disabled older people. The reason is that disabled people are unable to complete daily life independently due to physical impairments, and need the help of professional service personnel (28). Meal and cleaning services were also found to have a differential impact on the psychological health of solitary older people, disabled older people, and poor older people. This is likely due to the greater vulnerability of these groups who have a greater need for these services. In addition, the coverage and quality of this service are currently high, and older people can obtain it in a convenient and low-cost manner, thereby improving their life satisfaction. Furthermore, older people can benefit from the opportunity of interacting and communicating with others during meals which is likely to reduce their sense of loneliness (29). Medical and health services were found to have a positive impact on the psychological health of non-solitary older people, disabled older people, and wealthy older people. By comparison, the impact on other groups of older people was negative. This may be due to disabled older people having a stronger demand for medical services, requiring family support to a certain extent, and relatively high cost (30). Visiting and chat services have a differential impact on those who live alone and have a significant positive impact on their psychological health. This is most likely because solitary older people lack the care of their families and children and are eager to communicate with others (31). Emotional counseling services have a positive impact on the psychological health of different groups of older people, particularly the solitary and the disabled, who are more vulnerable to psychological problems due to life stresses. Emergency rescue services have a positive impact on the psychological health of the solitary and disabled older people, while their impact on other groups of older people was negative. This may be because solitary and disabled older people have impaired physical functioning and may be more likely to face the risk of sudden illness and/or accidental injury. Emergency rescue services provide protection for older people through remote monitoring, improving their sense of security. Cultural and sports activities services have a significant positive impact on the psychological health of all groups of older people, indicating that regardless of residential, physical, and economic status, older people have a clear need to participate in various social interaction activities to reduce loneliness, improve life satisfaction, social skills, and maintain their cognitive abilities. Legal aid service has a negative impact on the psychological health of non-solitary and poor older people, while it has a positive impact on other groups of older people. This may be because, when faced with legal disputes, the non-solitary group typically has children to assist them, while those who are poor may have limited understanding of the legal system, and generally resolve disputes through other means. Overall, community care services significantly impact the psychological health of the solitary, disabled and poor older people, proving that these vulnerable groups have a greater need for community care services. At the same time, different types of services have different effects on different groups of older people. Those who are solitary need more spiritual services, the disabled need more life support services, and the poor need more cultural Frontiers in Public Health 07 frontiersin.org and entertainment services. This analysis result is consistent with other Chinese scholars' research reports. For example, Wu (21) reported that solitary older people lack the support and care of their families regarding life and spirituality and need social interventions to improve their psychological health. Huang (32) also reported that disabled older people need customized and specific services based on daily living and care services, but the current supply is still significantly insufficient. Wang (33) reported that poor older people have fewer opportunities to participate in social activities and created the phenomenon of "conceptual poverty" and "spiritual poverty. " It is necessary to encourage and support poor older people to participate in community activities and improve their quality of life. --- Discussion This study examined the impact of community care services on older people's psychological health in Liaoning Province. Overall, community care services have a significant positive impact on older people's psychological health, which is consistent with previous research (34). This study further indicates that only five of the eight service items have a positive impact, while the remaining three have a negative impact, including medical and health services, emergency rescue services, and legal aid services. Previous studies have not found this phenomenon, but some Chinese scholars have pointed out that these three services have obvious shortcomings such as insufficient supply and poor professionalism, and thus cannot meet the needs of older people (35), which confirms the conclusion of this study. In addition, this study indicates that living conditions, disability, and older people's economic circumstances have a differential impact on the results. Community care services have a greater impact on the psychological health of older people living alone, the disabled, and the poor. This indicates that vulnerable groups need more customized and high-quality community services which has also been confirmed by other relevant studies. In China, the "Healthy Aging" policy is committed to improving the comprehensive health of older people, especially their psychological health and social adaptability. This study is based on the policy background of "healthy aging, " and differs from other studies that only focus on physical health. Instead, it focuses on multidimensional psychological health, to test the effectiveness of different community care services. This study fills the research gap in this field and suggests directions for Chinese community care services to address issues associated with population aging. At the same time, however, this study is limited to Liaoning Province, which has a very large aging population, and does not cover the whole country, which may result in the research results not being widely representative. In the future, with further research, more comprehensive conclusions may be drawn. --- Conclusion This study was based on survey data from pilot programs of community care services in Liaoning Province, to explore the impact of community care services on the psychological health of older people. The empirical results show that, of the eight service elements stipulated by policy, the implementation of five types of services had a significant positive impact on older people's psychological health, namely, cultural and sports activities services, visiting and chat services, emotional counseling services, meal and cleaning services, and living care services, while the other three service elements -medical and health services, emergency rescue services and legal aid services were found to have no significant effects, and may even have a negative impact on older people's mental health. This is mainly due to the relatively short development time of the three services, which are still in the initial stage of development, insufficient experience of practitioners, high service costs, and insufficient coverage, resulting in a lower overall service level. In addition, there are differences in the results of community care services under different living conditions, disability conditions, and economic conditions. It is necessary to focus on the psychological health of older people living alone, the disabled, and the poor, and provide specific community care services for these groups. In response to these conclusions and to the policy spirit of "healthy aging" and "active aging" in China, the following suggestions are proposed to improve the community-based elder care model, and improve the psychological health status of the older population: First, provide comprehensive and high-quality community care services for older people, focusing on improving the quality and coverage of spiritual services. Research shows that with the development of China's economy and society, older people's needs are characterized by diversity. After basic physiological and survival needs are met, emotional satisfaction, the acquisition of dignity, and the establishment of social interaction are equally important. From the perspective of the supply side of care services, existing care services for older people are characterized by "emphasizing physiology but neglecting psychology. " The coverage of spiritual services is relatively low, and the service level is relatively poor. It is recommended that the development of spiritual services for older people in the community be strengthened through fund allocation, talent cultivation, facility construction, team cooperation, and project introduction. Second, build a social activity platform for older people, and organize diverse cultural, sports, and other entertainment activities for them. Of the eight community care service elements, cultural and sports activities had the most significant impact on older people's psychological health, which requires lower capital costs in comparison to other services. In the case of limited community resources, priority could be given to the implementation of recreational activities and services. Communities should establish activity centers for older people, fully mobilize their human resources, and regularly organize activities for them, thereby connecting them to the community and enriching their lives. Third, it is important to focus on the psychological health of the most vulnerable and disadvantaged groups of older people, i.e., those who are solitary, disabled and/or poor, and give them more respect and care. Generally speaking, while impairments in physical functioning are obvious and receive attention, loneliness and lack of social interaction are more difficult to detect but are likely to result in loneliness, depression and an increased risk of mental illness. Therefore, when providing care services for older people, it is important to provide targeted services based on the particular circumstances of those who are particularly vulnerable, and develop corresponding service guidelines. All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher. --- Data availability statement The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author. --- Ethics statement The studies involving human participants were reviewed and approved by Northeastern University Ethics Committee. The patients/ participants provided their written informed consent to participate in this study. --- Author contributions All authors listed have made a substantial, direct, and intellectual contribution to the work and approved it for publication. --- Conflict of interest The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. Publisher's note

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Pilot study of the Korean parent training program using a partial group-randomized experimental study.

Problems-Korean American (KA) children experience mental health problems due to difficulties in parenting dysfunction complicated by living in two cultures.Parent Training Program (KPTP) was pilot tested with 48 KA mothers of children (ages 3-8) using partial group randomized controlled experimental study design. Selfreport survey and observation data were gathered. Findings-Analyses using generalized estimating equation indicated the intervention group mothers increased effective parenting and their children decreased behavior problems and reported less acculturation conflict with mothers.The KPTP is a promising way to promote effective parenting and increase positive child mental health in KA families.Korean American; parent training; randomized controlled experimental study; culturally and linguistically appropriate intervention Korean American (KA) immigrant parents encounter two cultural parenting norms which make them feel incompetent in their parenting; firsthand experience with Korean parenting practices and an unfamiliarity with desired parenting practices in the U.S. (Kim & Hong, 2007). Living in two conflicting cultures can also create conflict between parents, who practice Korean style parenting, and children, who quickly adopt U.S. cultural practices. Parenting dysfunction and the complications that arise when immigrant families must bridge two cultures are related to mental health problems among KA children and adolescents. KA children and teens report more emotional and behavioral problems than European American children or other Asian American subgroups (Choi,

Parent training is one of the most widely studied, cost-effective interventions known for reducing or preventing child mental health disparities through the promotion of effective parenting strategies (Brestan & Eyberg, 1998;Webster-Stratton & Taylor, 2001). However, the Incredible Years Parenting Program, a standardized parent training program developed for European American parents, did not generalize well to KA parents due to cultural and linguistic differences (Kim, Cain, & Webster-Stratton, 2008;Kim, Choe, & Webster-Stratton, 2010). In response, researchers developed the Korean Parent Training Program (KPTP). This program addresses parenting factors related to child mental health problems and can be delivered in the context of Korean culture and faith. Faith-based, health promotion program can be effective for KAs because 70 to 85% of them regularly attend KA churches (Kim, Han, & McCubbin, 2007;Kwon, 2004). The purpose of this study was to pilot-test the preliminary efficacy of the KPTP. --- Protective and Risk Factors Related to Korean American Child Mental Health KAs are a hard to reach population, making them medically underserved and understudied by researchers. Existing data clearly indicate child mental health disparities exist and there is an urgent need for early intervention in this population. Studies found 41% of KA children had behavior problems while 35% of U.S. children experienced similar problems (Kim, Guo, Koh, & Cain, 2010;Webster-Stratton & Hammond, 1998). KA children also scored significantly higher on depressive symptomatology than European American children (Nahm, 2006). Recent studies found 60% of KA adolescents had depression symptoms compared to 24% of European American adolescents (Duggal, Carlson, Sroufe, & Egeland, 2001;Nam, 2013). The most important protective and risk factors related to KA child mental health were parenting practices. Protective parenting factors relating to fewer behavior problems and more social competence among children were parental warmth, reasoning, expressions of affection through hugging/kissing and saying "I love you," and correcting misbehaviors (Kim, Guo, et al., 2010;Kim, et al., 2007). In contrast, risk parenting factors included parental rejection, physical punishment, intergenerational acculturation conflicts, and parental depression (Kim, 2005(Kim, , 2008a(Kim, , 2008b(Kim, , 2011(Kim, , 2012;;Kim, Cain, & McCubbin, 2006;Kim & Cain, 2008;Kim, Guo, et al., 2010;Kim, et al., 2007). Parental rejection was related to children's behavior problems and social competence, and adolescents' psychological adjustment and depression (Kim, 2008b(Kim, , 2012;;Kim & Cain, 2008;Kim, Guo, et al., 2010;Kim, et al., 2007), while physical punishment was linked to behavior problems (Kim, Guo, et al., 2010). For KAs, parental cultural adaptation to the U.S. (i.e., acculturation) moderated the relationship between parenting and child mental health. Acculturation is cultural and psychological adaptation into the mainstream culture (Berry, 2006). When mothers adopted fewer U.S. cultural practices, maternal rejection was negatively related to children's social competence. In comparison, when mothers adopted more U.S. cultural practices it was found to be unrelated to children's social competence (Kim, et al., 2007). Similar results were also found among adolescents; those adolescents whose mothers adopted more U.S culture had better psychological adjustment than those whose mothers adopted less (Kim, et al., 2006). In addition, mothers who used strict parental control and maintained their Korean culture while adapting to U.S. culture had adolescents who were better adjusted psychologically than adolescents whose mothers maintained less Korean culture while adapting to U.S. culture. These findings indicate effective and positive parenting practices can help to decrease KA child mental health problems and intergenerational acculturation conflict. It also indicates that adapting to U.S. culture functions as a protective sociocultural factor. Likewise, maintaining Korean culture while adapting to U.S. culture also functions as a protective factor. --- Standardized Parent Training Programs Parent training is a focused, short-term intervention aimed at improving effective parenting practices and decreasing child mental health problems (Barlow, Smailagic, Ferriter, Bennett, & Jones, 2010;Dretzke et al., 2009). According to the American Academy of Pediatrics (AAP, 1998), effective parenting practices include: (1) positive discipline to build intimacy (e.g., hug/kiss); (2) appropriate discipline to promote desirable behaviors (e.g., sticker charts) and reduce undesirable behaviors (e.g., timeouts); and (3) the avoidance of harsh discipline (e.g., verbal and physical punishment). A meta-analysis of 57 randomized controlled trials in the Cochrane Review supports the use of parent training, with a Heges's g standardized mean difference between -0.62 to -0.67, indicating that parent training leads to more decreases behavior problems of children than control group (Dretzke, et al., 2009). In another meta-analysis of 63 randomized controlled trials, Cohen's d effect size was 0.42 for improving child problem behaviors and 0.47 for improving effective parenting practices (Lundahl, Risser, & Lovejoy, 2005). However, most standardized parent trainings have been developed for U.S.-born parents familiar with U.S.-based parenting practices. They may not reflect the concerns or backgrounds of ethnic minority parents and may require significant adaptation. When adaptations were made, such as reducing the length of intervention period or eliminating critical core content, retention rates increase but effect size decreases (Gorman & Balter, 1997;Kumpfer, Alvarado, Smith, & Bellamy, 2002). Recently, a few culturally tailored parent training programs were developed and tested using more rigorous research methods targeting Chinese Americans (Lau, Fung, Ho, & Liu, 2011), African Americans (Coard, Wallace, Stevenson Jr, & Brotman, 2004), and Mexican Americans (Martinez & Eddy, 2005), and impacts were found to be positive and quite promising (Coard, et al., 2004;Gross et al., 2009;Lau, et al., 2011;Martinez & Eddy, 2005). The lead author pilot tested the Incredible Years Parent Training with a KA audience. She used the program without adaptations to keep the fidelity to the curriculum. The Incredible Years program, an exemplar version of parent training, uses recommendations from the American Academy of Pediatrics to teach effective parenting practices. Program outcomes have been examined repeatedly in a variety of rigorous trials (Brestan & Eyberg, 1998). Results from the lead author's pilot study showed intervention group mothers increased positive discipline in comparison to control group mothers but intervention group children did not decrease behavior problems (Kim, et al., 2008). Within the intervention group, mothers with less acculturation to the U.S. decreased harsh discipline whereas mothers with high acculturation increased appropriate discipline (Kim, et al., 2008). Parents noticed cultural differences in the skills taught and reported negative feelings about watching program videotapes that featured mostly English speaking European Americans characters. Parents advocated for a KA adaptation of parent training that reflected their culture, language, and parenting norms (Kim, Choe, et al., 2010). This led to the development of the Korean Parent Training Program (KPTP). --- Korean Parent Training Program As shown in Table 1, the KPTP uses multiple theories to bring together traditional Korean cultural elements (e.g., Confucianism, Korean parenting virtues), more recent cultural elements (e.g., Christianity), and effective parenting practices. First, the KPTP helps KA parents understand how living in two cultures impacts both their parenting and their child's mental health. Then, it reviews Christian parenting principles, such as unconditional parental love, and traditional Confucianism and Korean parenting virtues, such as role-modeling behavior that is respectful, warm, patient, and generous, as well as having high standards on children. Second, within the context of the parental acceptance-rejection theory, it shows parents how to use positive discipline strategies to build intimacy with their children. Third, the KPTP supports the use of effective discipline strategies, including how to help children with emotion regulation. Another useful parenting strategy taught in the KPTP is helping parents learn how to use operant conditioning procedures involving the application of consequences following a child's behavior to influence future behavior (Gilmel & Holland, 2003). The strategies are adapted from the Bright Futures in Practice: Mental Health, a nationwide mental health promotion program (Jellinek, Patel, & Froehle, 2002). For example, parents role-play a common physical punishment method among Koreans-raising their arms up in the air while kneeling for five minutes (Kim & Hong, 2007). After this roleplay, some parents have the insight that the method may not be as effective as they thought because it tends to make children angry rather than helping them reflect on their misbehaviors. It also emphasize a biblical parenting principle that says, 'do not provoke your children, lest they brome discouraged (Colossians 3:21).' This realization can motivate parents to find an alternative, non-punitive method, such as a brief timeout (Kim, Choe, et al., 2010). The KPTP manual is available in both Korean and English. --- Hypothesis It is hypothesized that: 1) upon completing the KPTP, intervention group (IG) mothers would demonstrate an increase in effective discipline strategies, parental warmth, and parent self-efficacy, as compared to waiting-control group (WCG) mothers; and 2) upon completing the KPTP, IG children would demonstrate a decrease in emotional and behavioral problems and intergenerational acculturation conflict in comparison to WCG children. --- Methods --- Study Design This study used a partial group randomized controlled experimental study design to test the effectiveness of the KPTP. --- Sample The study sample included 48 KA mothers, their children, and their children's Sunday School teachers. All participants were recruited from six, partnered KA churches in the Pacific Northwest. Criteria for inclusion of mothers were: (1) having a child between three to eight years of age; (2) being a first generation KA originally born in Korea; (3) being willing to take the initial twelve-week KPTP class followed by three, monthly booster sessions as a member of the intervention group (IG) or the waiting-control group (WCG); and (4) being willing to complete pre-(T1), post-(T2), and 3-month follow-up (T3) assessments following the KPTP intervention. Children between three and eight who were born to the participating mothers and teachers who interacted with participating children each week during Sunday School were also included. --- Instruments Discipline-The Korean Parent Discipline Interview (KPDI) (Kim, Guo, et al., 2010) was adapted from the Oregon Social Learning Center's Discipline Questionnaire to assess discipline strategies that the KPTP attempted to increase or decrease among participants. The KPDI is a 65-item, 7-point, Likert-type scale instrument with four subscales that measure harsh discipline (e.g., yelling, spanking), positive discipline (i.e., hug, praise), and appropriate discipline (e.g., timeouts, consequences). This instrument is available in English and Korean. Higher mean scores indicates higher tendency of using each discipline technique. Webster-Stratton and colleagues established predictive validity of the instrument by finding the instrument to be sensitive to the intervention (Webster-Stratton, 1998;Webster-Stratton, Reid, & Hammonde, 2001). Cronbach's alpha for the current KA sample was .68 for harsh discipline, 0.72 for positive discipline, and 0.60 for appropriate discipline. (Gottman, Declaire, & Goleman, 1998) is an instrument that has 81 yes/no items with four subscales that measure four parenting styles in emotion coaching including dismissing (e.g., 'Children really have very little to be sad about'), disapproving (e.g., 'A children's anger deserves time-out'), laissez-faire (e.g., 'You should express the anger you feel'), and emotion coaching (e.g., 'Anger is an emotion worth exploring').. The scale was translated forward and backward using Brislin's method (Brislin, 1970). One positive emotion coaching style score was computed by calculating score of emotion coaching score minus mean score of dismissing, disapproving, and laissez-faire Cronbach's alpha for the current KA sample was 0.74 for dismissing, 0.78 for disapproving, 0.55 for laissez-faire, and 0.60 for emotion coaching. --- Emotion coaching-The Emotion Coaching Parenting Style Parental warmth-rejection-The Parental Acceptance-Rejection Questionnaire (PARQ) is a 24-item, 4-point, Likert-type scale instrument that includes eight questions measuring warmth and sixteen measuring rejection (Rohner, 1991). Warmth subscale scores range from 8 to 32 with higher scores indicating higher parental warmth. Rejection subscale scores range from 16 to 64 with higher scores indicating higher parental rejection. Rohner (1991) reported evidence for convergent, discriminant, and construct validity. This instrument is available in English and Korean. Cronbach's alpha was 0.81 for warmth, 0.58 for rejection, and 0.85 for total scale. Parenting self-efficacy-The Parenting Self-Efficacy Scale (Choe & Chung, 2010) is a 37 item, 5-point, Likert-type scale instrument that assesses self-efficacy and parental ability to communicate with, discipline, and raise healthy children. Scores range from 37 to 185 with a higher score indicating a higher parenting self-efficacy. It was developed in Korean and was translated into English using the forward and backward method (Brislin, 1970). Choe and Chung reported construct validity and Cronbach's alpha of 0.95 for Korean mothers in Korea. Cronbach's alpha for current sample was 0.96. Child emotional and behavioral problems-The Pediatric Symptoms Checklist (Jellinek & Murphy, 1990) is a 35-item, 3-point, Likert-type scale instrument that assesses cognitive, emotional, and behavioral problems in children ages four to sixteen. Scores range from 0 to 105 with a higher score indicating a higher level of emotional and behavioral problems. It has 66% sensitivity and 95% specificity (Jellinek & Murphy, 1990). Jellinek and Murphy (1990) reported evidence for convergent and construct validity. The scale was translated forward and backward using Brislin's method (Brislin, 1970). The Cronbach's alpha for the Korean version in the current study was 0.73. --- Intergenerational acculturation conflicts-The Child Intergenerational Acculturation Conflict Scale was adapted from the Asian American Family Conflict Scale (AAFCS) (Lee, Choe, Kim, & Ngo, 2000). It is a 10-item, a 5-point, Likert-type scale instrument that measures the frequency of Asian American parent-child acculturation conflicts over values and practices. Scores range from 10 to 50, with higher scores indicating a higher frequency of parent-adolescent conflict. The validity was demonstrated by statistically significant correlations between the AAFCS scores and the Social, Attitudinal, Familial, and Environmental Acculturation Stress Scale scores (Gamst, Liang, & Der-Karabetian, 2011). Cronbach's alpha for the current study sample was 0.89. Observational data-Videotapes (see Procedure for details) were analyzed using Dyadic parent-child interaction coding system (Eyberg & Robinson, 2000). Positive interactions included a parent validating a child's emotion, helping with problem solving, reflecting the child's statements, making descriptive comments of the child's behaviors, following the child's lead, or giving the child options. Researchers also tracked the number of times a parent praised a child for a specific action within a 15-minute period. The coder was not blinded to the group assignment or assessment interval. Intervention group mothers' satisfaction with the program-The Parent Satisfaction Questionnaire was developed specifically for this program. This 65-item, 5point Likert-type scale instrument consists of five subscales to measure intervention group mothers' general satisfaction with the KPTP program, the trainer, the usefulness of the program delivery method, and the usefulness/applicability of the parenting techniques taught in the program. Cronbach's alphas ranged from 0.72 to 0.88 for the current KA study sample. --- Procedure Participants were recruited from six participating Korean ethnic churches from August to September 2011. During that time, a total of 58 women agreed to be part of the study. After completion of pre-intervention assessments for all participants, churches were assigned to intervention group (IG) and waiting-control group (WCG) using partial group randomization. The second author suggested pairing the churches based on the number of volunteers from each. Two churches, each with large numbers of participants were paired; however one church ultimately asked to take the class in spring (i.e., be in a waiting-control group) due to their church schedule. The third church has a large number of participating mothers who spoke English more fluently than Korean; as a result, this church was assigned to the intervention group. The rest three small churches were paired and randomized. Mothers could chose a KPTP intervention provided in Korean or in English. By the end of the study, five groups had received KPTP in Korean and one group had received it in English. There were four IG composed of a total of 31 mothers and two WCG composed of 27 mothers. Each group had five to twelve mothers. Once the groups were formed, the KPTP was delivered in a small group setting to the IG participants from September 2011 to March 2012. Data were collected from IG and WCG at pre-intervention (T1), post-intervention (T2), and 3-month follow up (T3). After T3 data collection the KPTP was offered to the WCG. No additional data were collected after KPTP was offered to the WCG. The institutional review board approved the study and the researchers obtained informed consent from all mothers and targeted Sunday School teachers. They also obtained assent from all children whose mothers had agreed to be in the study. Among the 31 mothers in the IG, three mothers withdrew (reasons: class ended too late in the evening, heath problem, returned to Korea) and three did not complete the survey. Among the 27 mothers in the WCG, four withdrew (reasons: pregnancy, two had care for a sick family member, one had to visit Korea). The data, therefore, represent responses from 48 total mothers (IG n = 25, WCG n = 23) for the T1 and T2 comparison. At T3, two mothers in IG and two in WCG dropped out (reasons: families did not want to fill out the questionnaires). Thus, for the T1 and T3 comparison, the data represent responses from 44 total mothers (IG n = 23, WCG n = 21). Using ANOVA, no significant differences on the demographic variables were found between mothers who dropped out (n = 11) and those who remained in the study (n = 48). Each mother received a $10 gift certificate upon completion of each T1, T2, and T3 assessment. Sunday School teachers (IG n = 8, WCG n = 8) completed self-report surveys on child emotional and behavioral problems observed in church. Teachers were blinded to weather parents of children were in the experimental or waiting-control group and to the assessment interval. Teachers received a $5 gift certificate upon completion of each T1, T2, and T3 assessment. Children (IG n = 16, WCG n = 9) who could read and write filled out surveys on perceived acculturation conflicts that occurred between them and their mothers. The research team read the questionnaires to the non-literate children (ages 5 and older) and recorded their answers. Children received a $10 gift certificate upon completion of each T1, T2, and T3 assessment. Observational data were gathered in the form of videotapes filmed at T1, T2, and T3 assessment. The tapes showed participating mothers and children interacting using a Tinkertoy construction set or a Jenga game. Parents were instructed to play with their child as they would normally play and to ask their child to clean up the toys once fifteen minutes had passed. Intervention delivery-Two bilingual and bicultural interventionists (i.e., the lead author and one interventionist) delivered the KPTP separately in small group sessions. The KPTP was delivered over a twelve-week period using weekly, 3-hour classes followed by single booster sessions (also 3-hours in length) held monthly for a total of three months. Intervention integrity and dosage-To assure integrity and consistency of each class, the lead author trained the interventionist by reviewing the PowerPoint of the program protocol including parenting principles, role-plays, and homework at weekly supervision meetings. The lead author also observed several sessions delivered by the interventionist. IG mothers attended the program an average of 9.71 classes (81%, range 5-12 classes) and completed 80% of the assigned weekly homework. --- Data Analysis Baseline characteristics were compared using descriptive statistics, ANOVA, and Chi square tests. The primary aim of the study was to test for IG versus WCG differences in the primary outcome variables. Analyses used a generalized estimating equation (GEE) model in SPSS 17 to test for treatment group differences at follow up times while controlling for the baseline value of the outcome variable. GEE estimates the parameters of a linear model with a possible correlation between subjects within clusters (Diggle, Heagerty, Liang, & Zeger, 2001). For the purposes of this study, clusters are the class groups. The GEE uses robust standard error estimates based on the 'sandwich estimator' to take into account withinsubjects correlations of the study variable scores during the follow up period. P values were 2-sided with a significance level of 0.05, and confidence intervals were at the 95% level. In this study, there are twelve outcome variables that were measured at two outcome time points (post-intervention and 3 months). Each outcome variable was analyzed separately at each time point. No formal adjustment was made for multiple comparisons in this pilot study, thus results should be interpreted with this in mind. --- Results --- Demographic Characteristics As shown in Table 2, no significant difference on all demographic variables was found between mothers, children, and Sunday School teachers between IG and WCG at T1, T2, and T3, except U.S. residency for T1 and T2. Overall, IG mothers lived in the U.S. significantly longer than WCG mothers, which can be attributed to the inclusion of the English-speaking group in the IG. This group consisted primarily of women who had come to the U.S. at a young age. However, when data were analyzed with and without controlling the length of stay in the U.S., the results were basically the same. The data presented in Table 3 did not control for the length of stay in the U.S. There were no significant differences on the demographic variables between children or Sunday School teachers in the IG or the WCG. --- Pre-Intervention Group Equivalence and Descriptive Data Means and standard deviations for all study variables by group and for T1, T2, and T3 are reported in Table 3. Oneway ANOVA indicated no significant differences on any of the study variables between IG and WCG at T1. --- Pre-and Post-Between Group Hypotheses Testing Using GEE As shown in Table 3, IG mothers, when compared to WCG mothers, increased effective and appropriate discipline, parental warmth, emotion coaching, and self-efficacy, and decreased parental rejection and harsh discipline (hypothesis 1). Observational data (i.e. videotapes) showed that IG mothers increased use of positive interactions and praise and decreased use of negative interactions more than WCG mothers. According to reports from mothers and Sunday School teachers, IG children decreased emotional and behavioral problems as compared with WCG children (hypothesis 2). IG children self-reported fewer intergenerational acculturation conflicts with their mothers as compared with WCG children (hypothesis 2). Therefore, both hypothesis 1 and 2 were fully supported using self-report data from parents, Sunday School teachers, and children, as well as videotape data of parentchild interactions. All significant treatment effects were maintained at T3 except teacher's report of child emotional and behavioral problems, child's report of intergenerational acculturation conflict, and videotaped data of mothers' positive and negative interactions with children. --- Intervention Group Mothers' Satisfaction with the Program The overall score of IG mother's general satisfaction with KPTP was 4.1 out of 5 (SD = 0.5), indicating that mothers approved of the program. Additionally, mothers said the program's delivery methods (M = 4.2 ± 0.4) and the parenting skills (M = 4.3 ± 0.3) covered were helpful. The parenting strategies most appreciated by mothers included: helping children with emotion regulation (20/42, 48%); learning what the Bible states about parenting (10/42, 31%); use of sticker charts (10/42, 24%) or specific praise (10/42, 24%) to promote good behavior; and how to express love to one's child (9/42, 21%). Overall, participants thought the strategies featured in the KPTP were easy to practice (M = 2.5 ± 0.5), with the easiest being expressing affection to one's child (M = 1.5 ±0.9), followed by using sticker charts (M = 2.1 ± 0.9), and giving specific praise (M = 2.1 ± 0.9). The hardest parenting strategies to use included: anger management (M = 3.3 ± 0.9); relaxation/ meditation (M = 3.1 ± 1.2); and emotion coaching (M = 2.9 ± 1.1). The most commonly cited reasons for attending the class were: to learn effective discipline strategies (31/42 74%); to learn emotion coaching (21/42, 50%); to better understand parental roles reflected in the Bible (14/42, 33%); to learn about parental stress and emotion regulation (13/42, 31%); and to practice ways to decrease intergenerational acculturation conflict (10/42, 24%). --- Discussion The major finding of this study was that the KPTP appears to be a promising way to promote effective KA parenting and increase positive mental health outcomes for KA children. Compared to WCG mothers, IG mothers were significantly more likely to employ effective/appropriate discipline strategies at both T2 and T3. These results are consistent with previous studies that demonstrated how parent training increases effective parenting strategies among ethnically diverse families (Gross et al., 2003;Martinez & Eddy, 2005;Tucker, Gross, Fogg, Delaney, & Lapporte, 1998). The findings of this study are particularly noteworthy given the results of the lead author's previous research testing the Incredible Years program with KA parents. In that study, all participants increased only their use of positive parenting strategies (Kim, et al., 2008). Furthermore, acculturation showed a significant impact on treatment effect; mothers with low acculturation significantly decreased harsh discipline, whereas those with high acculturation showed a trend of increased, appropriate discipline (Kim, et al., 2008). In the current study, the treatment seemed to impact all mothers as IG mothers reported less harsh discipline, more positive discipline, more appropriate discipline, and more emotion coaching. Videotape data of parent-child interactions also indicated that study participants significantly increased positive interaction and decreased negative interactions at T2. While IG mothers praised their children an average of 3 times/videotaped session at T1, this number jumped to 9-11 times/videotaped session at T2 and T3. This study also found KA mothers significantly increased parental warmth and decreased parental rejection at T2 and T3. These factors are significantly related to KA children's emotional and behavioral problems and social competence, as well as depressive symptoms among KA adolescents (Kim, 2002;Kim, et al., 2006;Kim & Cain, 2008;Kim, Guo, et al., 2010;Kim, et al., 2007). Compared to a standardized parenting program, the KPTP was developed to fit Korean culture and faith, which are important social determinants that affect health, functioning, and quality of life outcomes (US DHHS, 2012). The specialized curriculum allowed participating mothers to easily learn and practice strategies taught in the program, which resulted in a high degree of participant satisfaction with the curriculum. KA mothers felt more comfortable adopting and practicing new parenting styles because the KPTP linked these practices to KA culture and faith. For example, a previous study found that KA parents made decisions for their children and asked children to follow them (Kim, Im, Nahm, & Hong, 2012). This practice is strongly supported in collectivistic Confucian Korean society, where parents view their children as extensions of themselves, and as such, assume full responsibility for their children's good and bad behaviors and outcomes (Ahn, 1994). KA parents also perceived this strict parental control as a way of expressing their love for their children (Kim, 2005). The KPTP helped participating parents realize this practice may not fit well within the individualistic American social context where children are encouraged to be independent, nor did it fit with Christian faith principle, which views a child as a separate entity from his/her parents. The KPTP also helped parents to understand that this practice might hinder the development of a child's autonomy. Once learned, the parenting strategies in the KPTP helped participating mothers feel more competent, as evidenced by their significantly higher parenting self-efficacy scores recorded immediately and three months after taking the KPTP. Previous studies have also demonstrated that participants who take parent trainings become empowered through their experience (Gross, Fogg, & Tucker, 1995;Tucker, et al., 1998). In the late 1970s, about 60% of first generation KAs in the Midwest saw a need to alter their parenting practices because existing practices delayed cultural adaptation into American society (Hurh, Kim, & Kim, 1979). Recent studies found that KA parents reconstructed their parenting practices after evaluating the pros and cons of Korean parenting, constructed in Korea, and American parenting, observed in the U.S. (Kim & Hong, 2007;Kim, et al., 2012). Findings from the current study indicate the KPTP could help KA mothers make this transition more quickly and successfully. This finding is consistent with health promotion studies that found culturally and linguistically appropriate programs were effective in changing immigrants' health behaviors (Kelly, Huffman, Mendoza, & Robinson, 2003;Zuniga de Nuncio, Nader, Sawyer, & Guire, 2003). However, this pilot-study needs to be expanded using a larger sample. In this study, children's baseline emotional and behavioral problem score was low in both conditions. Nonetheless, IG mothers reported that their children significantly decreased emotional and behavioral problems at T2 and T3. Sunday School teachers also reported that participating IG children significantly decreased emotional and behavioral problems at T2. Previous studies have shown that parent training promotes effective parenting practices and can lead to a decrease of children's emotional and behavioral problems and the prevention of conduct problems in adolescence (Barlow, et al., 2010;Dretzke, et al., 2009). Children of IG mothers reported significantly fewer intergenerational acculturation conflicts at T2. Previous studies have shown intergenerational acculturation conflict was significantly related to KA adolescents' depressive symptoms (Kim & Cain, 2008). The KPTP teaches parents how living in two cultures impacts the parent-child relationship and children's mental health based on the acculturative family distancing theory (Hwang, 2006). This study shows that when parents understand and work with the root causes of intergenerational acculturation conflict, children will perceive less conflict. Since this effect was not maintained at T3, this needs to be reexamined using a bigger sample. Several limitations must be noted. Each outcome variable was analyzed separately at each time point and formal adjustment was made for multiple comparisons; therefore, results should be interpreted with this in mind. Since participants were recruited from KA churches, they may have been more involved in the KA community and more willing to learn new discipline strategies. Hence, results cannot be generalized to the total KA parent population. A partial group randomization assignment weakened the strength of a randomized controlled experimental study. The treatment fidelity was checked by the first author who also was one of the interventionists, which may have decreased the meaningful assessment. Finally, Cronbach's alpha reliabilities for harsh discipline, appropriate discipline, liaise-faire, emotion coaching, and parental rejection were low. A few strengths need to be stated. The KPTP was developed using a great degree of cultural sensitivity and this influenced the positive effects of the program. It combines well researched, effective parenting techniques with KA culture and faith to positively impact KA parenting and child mental health using the parental acceptance-rejection theory and the acculturative family distancing theory as theoretical frameworks. Not only have parental acceptance-rejection and intergenerational acculturation conflict been proven to impact child mental health, they carry particular significance for the KA population and are, therefore, appropriate and effective. This study also used multiple sources of data to test the research hypotheses. The approach used in this study can be applied other immigrant families who face similar challenges of raising children in two cultural parenting norms. --- Conclusion The KPTP was effective in changing KA mothers' parenting practices and improving their children's mental health outcomes because it taught effective discipline strategies using KA culture and faith as a foundation. Future research should be conducted with a larger sample size, should include an assessment of both mothers and fathers, and each site should have both an intervention and a waiting-control group. For example, small churches can be grouped to allow for 20-30 families in one research site. Furthermore, Korean language videotapes of the KPTP program would facilitate understanding of the content. Implications for healthcare practice must be viewed with caution since this was a pilot study utilizing a small sample. Nonetheless, this study shows that healthcare professionals can positively impact the discipline practices of KA mothers through culturally relevant parenting education training. With practice, specific discipline strategies can effectively increase positive parenting among KA mothers, reduce child/parent intergenerational conflict, and improve the mental health of KA children. (Gottman, et al., 1998): parents help children with emotion regulation by recognizing their emotions, taking deep breath to calm self, listening and validating emotions, and helping children to solve problems that triggered the emotion. ♦ Operant conditioning procedures (Gilmel & Holland, 2003): parents apply consequences following a child's behavior in order to increase or decrease the likelihood of that behavior recurring. ♦ Bright Futures in Practice: Mental Health (Jellinek, et al., 2002): a national health promotion and disease prevention initiative that addresses children's health needs in the context of family and community. Promotes use of positive discipline (hugging/kissing) and appropriate discipline (sticker charts, timeouts). --- Author Manuscript Author Manuscript Kim et al. Page 17

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The News We Like Are Not the News We Visit: News Categories Popularity in Usage Data

Most of our knowledge about online news consumption comes from survey-based news market reports, partial usage data from a single editor, or what people publicly share on social networks. This paper complements these sources by presenting the first holistic study of visits across online news outlets that a population uses to read news. We monitor the entire network traffic generated by Internet users in four locations in Italy. Together these users generated 80 million visits to 5.4 million news articles in about one year and a half. This unique view allows us to evaluate how usage data complements existing data sources. We find for instance that only 16% of news visits in our datasets came from online social networks. In addition, the popularity of news categories when considering all visits is quite different from the one when considering only news discovered on social media, or visits to a single major news outlet. Interestingly, a substantial mismatch emerges between self-reported news-category preferences (as measured by Reuters Institute in the same year and same country) and their actual popularity in terms of visits in our datasets. In particular, unlike self-reported preferences expressed by users in surveys that put "Politics", "Science" and "International" as the most appreciated categories, "Tragedies and Weird news"' and "Sport" are by far the most visited. We discuss two possible causes of this mismatch and conjecture that the most plausible reason is the disassociation that may occur between individuals' cognitive values and their cue-triggered attraction. * Work performed when the authors were at Nokia Bell Labs.

Introduction The interest in the exchange and consumption of news is one of the oldest human habits (Stephens 2006). What has changed over time is the medium to disseminate news: from word-of-mouth, to written, to printed, to broadcasted and finally to online publishing and social media sharing. The shift from print to online offers new opportunities to study people's access to news, which human scientists, but also journalists and news organizations can leverage to understand readers' interests and better adapt their palette of content. The literature is rife with data-driven studies of online news consumption (see Sec. 2). These studies characterize various aspects, for example the virality of news (Kourogi et al. 2015), news coverage in social media compared to traditional media (Olteanu et al. 2015), or user preferences compared to editors' suggestions (Boczkowski 2010;Abbar et al. ). However, as with any empirical work, these studies are limited by what their input data allows to observe. We identify four types of data sources used so far to characterize online news. (i) The first is published content. For example, projects like GDLET (Leetaru and Schrodt 2013) and EventRegistry (Leban et al. 2014) crawl online news articles worldwide and make them available to researchers. Although this approach faithfully captures the "supplier" part, such data does not convey what users really consume. (ii) The second source is what is publicly shared in popular social networks (Osborne and Dredze 2014). Although this approach nicely captures how users relay and react to news, it misses what happens outside the social network. (iii) The third source is collecting usage data statistics from an individual online newspaper (Boczkowski 2010;Abbar et al. ;Dezsö et al. 2006), a comprehensive view but limited to one news outlet. (iv) Finally, researchers and practitioners counter the partial visibility of these sources with more traditional sources like user surveys. Institutes like Pew Research and Reuters regularly issue survey-based reports (Mitchell and Page 2014;Newman, Levy, and Nielsen 2015) tracking various aspects of news consumption habits worldwide. Although they offer insights on larger aspects of human behavior and preferences, it is not clear how precise user explicit feedback is in capturing actual usage of online news. In this work, we uncover a different source of data and contrast it, to the extent possible, to the previously described four existing data sources. In particular, we extract and analyze online news visits made by a population of users. We define a news visit as a click to a web page containing a single news article. In contrast to prior work focusing on a single news outlet (e.g., Dezsö et al. (2006)), we observe all news visits of individuals in a population of users across any online news website they visit when connected to their Internet provider network. More precisely, we extract online news visits by passively observing traffic traversing a network link, from which we extract the pages containing news that users visited. We perform our analysis on data collected for about one year and a half at vantage points we installed in Italy: three are located in the network of a large Internet Service Provider (ISP) and the forth is located in a large university campus. During this period we observe 80 million visits to 5.4 million distinct articles overall. In this paper, we focus in particular on the popularity of news categories. We define a category as the general theme of a news article, as directly assigned by the publisher, as opposed to the specific story or event it covers. News categories correspond thus to the sections under which news editors often group their articles (e.g. Sport or International). We quantify the popularity of news categories in terms of number of visits and put it in perspective with their popularity considering various sources: (i) news discovered on Facebook, (ii) news visits to major news outlets, (3) published articles, and finally, (iii) user preferences expressed in surveys (Sec. 5). To estimate the view that social media and major news outlets have, we analyze the referral of the news visits, i.e., the previous page from which the visit came, to study how users discover news articles and quantify the importance of social networks and major publishers in the overall consumption volumes (Sec. 4). We regularly crawl all news outlets in Italy for a duration of three months to get a dataset of all published articles. Finally, to better assess the significance of the category popularity, we study their stability across locations (spatial) (Sec. 7) and across time of day and months (temporal) (Sec. 6). We summarize our findings as follows. • Usage data obtained from the network complements existing data sources well. At most 11% of news visits in our datasets come from social networks (Sec. 4). As such, studying only news shared on social media captures a small fraction of news visits-as already pointed by Flaxman, Goel, and Rao (2016). Popularity of categories as inferred from news discovered on Facebook does not match the popularity obtained from the analysis of all data. In particular, "Tragedies and Weird" news are over-represented on Facebook, while "Sport" is under-represented. Similarly, the popularity of categories we observe when considering all visits does not match that observed individually by a major national news outlet either. • "Tragedies and Weird" and Sport are the most popular categories of news in our datasets (around 16% of visits each). Politics is surprisingly less popular with 3.5% of visits. Overall, despite notable differences, the popularity of many categories follows the supply, or what is published by editors. Surprisingly, Reuters' survey estimates do not match our data. For instance, respondents report International and Politics news as some of the most popular categories, far beyond Sport and Weird news, suggesting a dissociation between what users prefer and what they actually consume or are attracted by (Sec. 5). • We discuss two possible causes to explain this dissociation. The first is social desirability bias whereby users would show a preference for categories that give a better image of themselves. The second, inspired by the incentive-sensitization theory of addiction (Berridge and Robinson 2016;1998) in neuroscience, postulates that what we observe is a legitimate difference between what people "want" (the motivational part of a given reward) and what they "like". Our discussions with two experts (the professor of political communication and editor of the Reuters survey-based report, and the biopsychologist who formulated the incentive-sensitization theory of addiction) indicates that the second cause is more likely (Sec. 8). • News-category popularity is overall stable across locations, despite demographic differences between the populations we study (Sec. 7). Albeit overall stable, the popularity of certain categories slightly varies depending on time of day or certain events of the year (e.g., vacations, beginning and end of the sports season and major events like the Paris terrorist attacks) (Sec. 6). --- Related Work Since the introduction of online newspapers, researchers in different communities have seen new opportunities to study news consumption. In this paper, we study online news with a focus on the difference between various data sources. Comparison of various news sources. Some of the related work compared various sources of news in terms of coverage. Zhao et al. (2011) use topic models to compare the topics in news shared in Twitter with those of the New York Times for a period of three months. The authors found that Twitter covers more personal life and pop culture and that users tweet less about world events, but retweet a lot, which causes the news to spread. Olteanu et al. (2015) compare the coverage of news about climate change in traditional news media and in Twitter. They show that the scope of the traditional news media they consider and Twitter are different. Chakraborty et al. (2016) also compare the topical coverage of the New York times, Twitter and Facebook, and highlight other differences. Kwak et al. (2018) compare the gap between "media attention"-measured as popular topics at a news aggregator -and "public attention" -measured with Google Trends -on international news coverage across hundreds of countries. Finally, Boczkowski (2010) In this work, we not only compare news categories discovered on social media and those published by news outlets, but we additionally compare these categories to (i) categories considering all news visits of a population, (ii) those considering only visits to major news outlets and, finally, (iii) those preferred by users in surveys. We similarly find differences between published articles and those visited from Facebook. In addition to prior work, we find that focusing on a single news outlet, although very popular, does not capture the overall behavior of users when including all outlets. Hence, what is learned from a large single outlet cannot be representative of all traditional news media. Unlike prior work, ours spans visits to all news outlets, for different populations of users and for a long period of time. This allows us to observe how habits change over time and regions. Usage of surveys. Surveys remain a valuable tool to understand user behavior online (Mitchell and Page 2014;Newman, Levy, and Nielsen 2015;Prior 2009;Lee and Chyi 2014). Research institutes like Reuters or Pew Research regularly issue survey-based reports tracking various aspects of user behavior. Here, we contrast popularity inferred from usage data with self-reported preferences in surveys (Newman, Levy, and Nielsen 2015). Similarly to our work, Lee and Chyi (2014) question the perceived noteworthiness of consumed news. The authors rely on a survey to show that only about one third of the content produced by the mainstream news media is perceived as noteworthy. Our work shows that what users value might not necessarily match what they will actually view. Surveys are also known to suffer various biases. For what concerns news, in a prominent work, Prior (2009) has confirmed anecdotal evidence suggesting the inability of surveys to accurately measure news media exposure. In particular, by directly comparing Nielson's audience measurement estimates to survey-based estimates, Prior showed that selfreports tend to overly inflate media exposure, by a factor of three on average and up to eight for certain demographics. Our work complements his by comparing survey estimates and usage data based on the finer granularity of what users value (news-category preferences) and not only exposure. We reveal indeed a major difference between self-reported preferences and actual views. News on social media. Less directly related to our work, in recent years, social media has risen as a means to share news. This has led to the explosion of social media datadriven studies of news. We report few examples. Kwak et al. (2010) show that 85% of the topics in Twitter are related to news headlines. Osborne and Dredze (2014) compare the performance of Twitter, Facebook and Google Plus in terms of news coverage and latency. They find that Twitter is faster while the other two offer more diversity. Saez-Trumper, Castillo, and Lalmas (2013) identify different kinds of biases in news shared on Twitter. Wang and Mark (2013) study the news consumption from social media in China. They characterize different types of audience for different types of news. Kourogi et al. (2015) extract features from the headlines and text of tweeted news and use an SVM ranker to infer features that can predict the virality of a news article. Morgan, Lampe, and Shafiq (2013) show that users sharing news on Twitter present no bias based on their perceived ideology of the news outlets, i.e., they see no bias due to selective exposure in their datasets. Flaxman, Goel, and Rao (2016) study whether social media helps increase exposure to diverse perspectives or lead to ideological segregation by creating filter bubbles. In their analysis, they find that most news consumption comes from people directly visiting mainstream newspapers web sites, with only a small fraction of news visits coming from Facebook. In this paper, we confirm that only a small fraction of news consumption in our datasets comes from social media and highlight a difference in the popularity of certain news categories when considering overall visits and those coming from Facebook. --- Usage data: a new observation point In this paper, we rely on datasets that gives us a privileged vantage point to study news categories' consumption habits. In this section, we present our datasets, the ethical issues around their use and how they complement existing sources. --- Datasets and methodology Our analysis relies on a record of news visits we extract from passive Internet traffic observation on four different networks with tens of thousands of users who access the Internet from their PCs, smartphones and tablets. We first describe our methodology to extract news visits from the raw traffic. Data collection. We collected data from four networks: at one university campus in Italy (Campus-City2) and in a large residential ISP in two different Italian cities (ISP-City1, ISP-City2-a, and ISP-City2-b). In the first scenario, we monitor the link that connects the campus LAN and WiFi networks to the Internet. In the residential scenarios, we monitor traffic from one district in one city (ISP-City1 ), and two different districts in another city (ISP-City2-a and ISP-City2-b ). Here, users connect to the Internet thanks to ADSL or FTTH access, which is shared through WiFi inside their houses. The traces were obtained by running Tstat (Finamore et al. 2011). Tstat processes network packets and extracts raw HTTP requests. More precisely, for each HTTP request, it extracts the requested URL, the referral (which captures the URL of the previous page visited by the user, if any), an anonymized IP address, the timestamp of the visit, and the user agent (which describes the browser or the app originating the request). All in all, we analyze tens of billions of HTTP connections spanning the period from January 1st 2015 to May 15th 2016. We rely on a fifth dataset, Published-articles obtained by crawling the 667 major news outlets in Italy for a period of 3 months. This allows us to contrast what is published with what is consumed. All in all, we collect 80k articles. From HTTP traces to visits. HTTP traces contain a large number of requests to images, scripts, or ads that compose webpages, but that do not correspond to the page users actually visited. Hence, we first need to extract visits to webpages. For this, we use a Hadoop cluster and adapt algorithms from our earlier work (Ben Houidi et al. 2014) to extract user visits all HTTP requests. Identifying news articles. From the set of visited URLs, we keep only those URLs that correspond to well-known online newspaper sites. Defining which webpage corresponds to a news article is subjective and tricky. In particular, lists of news outlets used in prior studies (Bakshy, Messing, and Adamic 2015;Ribeiro et al. 2018) focus mainly on Englishspeaking news outlets and hence are unfit to identify news articles in our Italian-based dataset. To overcome this issue, we rely on the Google News authority and consider all publishers that it indexes as potential news outlets. To build our list, we crawl Google News Italy once every 20 minutes during one month and build a list of unique outlets. The resulting list has 667 online outlets that we make available online (onl online April 2019). Google News does a thorough job in indexing news. Our manual inspection of outlets in the list shows that it covers all the popular online outlets in Italy including some influential blogs. Our analysis, however, may miss some foreign or unpopular niche newspapers. Table . 1 provides for each of the four locations the number of distinct news articles that we observe. Assigning categories to articles. Finally, we label news articles with categories. Assigning a category to a news article is also difficult and subjective. To counter this, we rely on the sections under which editors publish articles. So, similarly to prior work (dos Rieis et al. 2015), whenever available, we extract the category of news assigned by the news editor. Using this method, we identify first 167 unique section names in the four datasets. Since different editors may give different names to the same categories (e.g., use of plural and singular), we manually merge similar categories. Similarly, we group sub-categories into larger ones by hand. We hence obtain 40 distinct categories. This allows us to confidently label more than 70% of news articles. The remaining 30% are hard to automatically label. By manually inspecting them, we observed that most of them come from minor unpopular websites that do not adopt proper labeling of sections. To shed light on the composition of some ambiguous categories, we manually verify three categories that sometimes overlap with others: • International: Many articles are published under the International section, but it is difficult to further pinpoint the category of the news article beyond the fact that it happened abroad. We manually label 200 randomly chosen articles from this category and find that 60% is about "Tragedies/Weird" news and 16.5% of International politics. An additional 11% are a mixture between politics and tragedies (wars, fraud, terrorism attacks, etc.). • Ed. Columns: Many articles are grouped by editors under various names like "columns", "opinions" or (special) "editions". For the ease of the presentation, we group all these articles under the label "Ed. Columns". Similarly, labeling a 200-article sample, we find that such columns cover a large number of topics, with "Tragedies/Weird" having 25% of articles and Politics 17%. • Tragedies/Weird: One popular section referred in Italian as "cronaca" is notorious for reporting mainly Crime stories. We manually label 200 randomly chosen articles from this category and find that it contains 42% of Crime-related articles, 31% are about natural disasters and accidents, and around 10% are weird news. For the ease of the presentation, we refer to this category as "Tragedies/Weird", but it contains a majority of crime news. We manually review samples of the rest of the categories as well to confirm that articles are correctly labeled. We also publish the scripts we use to group editor sections into categories as well as the 80K articles in Published-articles dataset and their associated categories (onl online April 2019) to allow further verification of our methods. Identifying users: Households and surfers. One challenge for our analysis is that the traces have no per-user identification. A single user may appear multiple times in the traces, because she may connect from multiple devices at home. Conversely, multiple users may share the home gateway's IP address, e.g., members of a household connected to the Internet through the same ADSL/FTTH gateway. To overcome this, we study "users" at two granularities: surfers and households. We identify a household by the anonymized IP address. Because of the static assignment by the ISP of IP addresses to home gateways, this corresponds to a household in ISP traces. 1 We define a surfer as the concatenation of the anonymized IP address and the user agent. A surfer captures a particular user surfing the web from a particular browser or mobile app. As documented in our prior work (Vassio et al. 2018), we observe that smartphones and tablets account for more than 50% of devices in the datasets and generate around 20% of page visits. Note that with this definition, the same person might still appear as multiple surfers. This is particularly likely if we take into account the long duration of our traces and the fact that user agents change with software upgrades. Neither surfers nor households defines precisely a user, we will use them both with caution to approximate per-user behavior. Table . 1 shows the numbers of observed households and surfers in the traces.2 Finally, unless otherwise stated, we consider the number of visits to a particular article as the number of distinct surfers that clicked on the article. Note that counting the popularity of articles considering the number of distinct households instead of the number of distinct surfers does not considerably change the results: only very few articles are read by more than one surfer in a household. --- Ethical Issues Privacy protection mechanisms implemented in Tstat have been devised in close collaboration with ISPs' privacy officers and legals (Trammell et al. 2014). Tstat processes packets in real time and obfuscates any Personally Identifiable Information (PII). IP addresses are anonymized using consistent and irreversible hashing functions -so that it is impossible even for the ISP network administrators to link traffic to a customer identity. In this work, we instrumented Tstat to collect the minimum information required for our analysis. It only logs URLs and referrals and user agent strings. Moreover, we instrument Tstat to sanitize URL to avoid exposing users' identifiers such as email addresses, by, e.g., removing query parameters after the "?" character. Web cookies and locations are not logged. Note that Tstat has no visibility on encrypted traffic (HTTPS), where the sensitive information concentrates. 3 Our analysis ignores the traffic generated by users who activate the Do-Not-Track flag in their clients (observably less than 1%). Our traffic monitoring activity and data collection obtained the approval of the Security and Privacy Offices of the campus and the ISP in which we deploy our traffic monitoring probes. We discussed the opportunity to make customers aware of the data collection. Given the anonymity and the technical precautions we adopted to preserve users' privacy, this was considered to be not required. With the 2018 European General Data Protection Regulation (GDPR), however, this type of data collection does require explicit user consent. Thus, future data collection efforts of this type will become more challenging in Europe. Finally, the data is only available to the researchers for the sake of pursuing their research objectives, which involves only the study and publication of aggregated results. Hence, none of the analysis or the results we present in the paper can be linked back to a single user. The data analysis (which was conducted post-GDPR) was subject to a privacy impact assessment, conducted with the data protection officer of Inria. Given that the datasets were already available, that they do not contain any PII, and that the analysis builds on aggregated trends, the conclusion was that no additional formal ethical review was required for the analysis. --- Limits Our methodology and datasets have some limits that we summarize hereafter. • First, our perspective is spatially constrained: we can monitor news browsing behavior (on both mobile and laptop) only when users are connected to the networks we monitor, which correspond to either their home or work. As such, we miss online news consumption when users connect to the Internet using cellular networks, e.g., when they read the news from their mobile while travelling or commuting. • Second, our dataset focuses only on actual clicks to news articles and can not capture when users get exposed to online news without visiting the news article, for instance by seeing the preview as shared on a social network. • Third, we lack a precise way to identify a user. To this end, we mainly focus our analysis on properties exhibited by aggregated populations of users. Whenever needed, we carefully rely on the notions of surfer and household to approximate users. This limitation also prevents us by design from obtaining demographic information about users to be used in the analysis. • A fourth limitation is that this dataset comes from a single country. Therefore, our findings might not generalize to other regions and other cultures. • Finally, especially when later compared to surveys, our dataset lacks of provable guarantees of representativeness of users in the studied country. In general, whenever applicable, we tested the statistical significance of our results. Given the large scale of our dataset, when comparing empirical CDFs for instance, even barely visible differences between CDFs were significant up to 3% of significance level. So while we can assess how our results and data (which is considerably large both in time and space) are significant and representative for the populations we study, we have no guarantees that --- Weight of social media and online publishers Both social media and online publishers represent standard sources to study news consumption. To understand how usage data complements these sources and infer their importance, we study the news' referrals, i.e., the pathways from where the visit to the news article came. Using this approach, we can measure the share of visits in our datasets that comes from online social networks and online publishers. Tab. 2 presents the results for the three residential areas for two separate months, April 2015 and April 2016. The table shows a ranking of the most important sources and their respective shares. First, note that "Self referral" means that the visit comes from a webpage within the same website. The "Direct Browsing" class corresponds to visits with no referral. This may be due to direct visits (e.g., bookmarks) or often to links obtained via alternate channels like email or messaging apps that do not pass the referer, something sometimes called the "Dark social Web". 4 Note also that we verified that Google, Facebook and Twitter always passed the referral at the time of the data collection. Hence, we fortunately do not miss their referral traffic and can precisely estimate their share. Finally, it is worth noting that the impact of HTTPS on our referral analysis is limited. In the worst case, the referral share of other possible unknown HTTPS websites is upper bounded by 10-15%, which is the share of "Direct Browsing" (no referral). Overall, with the exception of the few variations that we discuss below, the results are stable across locations and especially across months. Not shown on the table, we verify that the results change only slightly between months. Regardless of the location, most of the visits come from the homepage of the online newspaper itself. Indeed, 57% to 69% of all news visits are self referrals. This result implies that users mostly rely on visiting the website of their favorite online newspaper to discover news. Far below, the next most frequent referrals are "Google search" 5 (around 10%), "Direct Browsing" (12-15%) and "Facebook" at around 10%, with the exception of ISP-City2a(around 5%), which we explain later. Twitter's share is much smaller (0.1-0.27%). Google News accounts for around 1% despite 22% of surveyed people in Italy claim to use it to read news (Newman, Levy, and Nielsen 2015). Two sources of data show visible variations across locations and across months. The first is the "Direct Browsing" which steadily increased in one year. We believe that this is due to the increase of HTTPS adoption, which implies that less referers are passed; more visits appear to us as "No referer". The second is Facebook, which has around 10% in ISP-City2-band ISP-City1 but only 4 to 5% in ISP-City2-a. We conjecture that this is due to the fact that ISP-City2-a aggregates traffic for an area which has a lot of office buildings. In a working environment, people may be less likely to use Facebook to discover news. This dataset, as opposed to the others, has indeed higher activity during the day and week days and lower activity at nights and weekends. Finally, the relatively small share of social networks (11% at most) is somewhat surprising. To verify that our datasets do not introduce a bias concerning social networks, we study the percentage of active Facebook and Twitter users. 6 We find that 65% of surfers in our datasets visited Facebook in 17 months, and only 7% visited Twitter. These percentages are similar to the available statistics of Facebook and Twitter usage in Italy (Manson online May 2016;Statista online May 2016). This result also confirms the study of Flaxman, Goel, and Rao (2016), which found a small fraction of news visits coming from Facebook. Notice that the immediate referral metric might underestimate the weight of social media. For instance, users coming from Facebook and landing on a news article may end up visiting a number of other articles on the site. We analyze the whole chain of referrals starting from Facebook. We find that the vast majority of visits leaving Facebook stops only one page away. This behavior is documented in more details in our prior work (Vassio et al. 2018). Since online newspapers are the most influential news pathways with 55% of referral traffic, we study also the percentage of visits that each of them drives individually. We 5 News visits from Google Search suggest that users either were intentionally looking for news about a particular event, or used the search engine to find the homepage of a newspaper. 6 Traffic towards these services is encrypted using HTTPS (thanks to the refer field, we can only see visits that come from these websites because they always pass the referrer when transitioning from HTTPS to HTTP). Hence, for this task, we use the Tstat TCP and DNS logs available with our datasets. find a large disparity between news outlets. While 80% of online newspapers are referral for less than 0.1% of all news visits, 31% of visits comes from the top 5 newspapers. To better understand this, we show in Fig. 1 the top 20 newspapers in terms of referral share in ISP-City1 (red bars), together with the referral shares of the same newspapers in ISP-City2b (blue bars). The top newspapers are similar, but present differences in their ranking due to regional preferences. For instance, outlet-city1-1 and outlet-city2 are very popular local online newspapers based in City1 and City2, respectively. We explore such a spatial effect in more details in Sec. 7. Takeaway. Although many studies of news consumption are based on news shared in social networks, direct access to online newspapers remains the main source for most users in our datasets. Only 16% of clicks to news articles in our dataset come from social networks. Understanding how and what news are shared is clearly important per se, but these news might only represent a small fraction of what is consumed. Depending on the geographical locations, certain news outlets account alone for up to 18% of all news referral traffic. We will further assess in Sec. 5 if data obtained from a single major news outlet or Facebook can be representative of news-category usage behavior at large. --- Popular News Categories We now measure the popularity of news categories in our datasets and put it in perspective with the popularity that can be inferred from various other sources. The first row of Table 3 presents the top 11 most popular categories by aggregating data from all our four locations. We define the popularity here by the percentage of visits that each category gets. The top 11 categories capture together around 85% of all visits. We see that the most visited categories are Tragedies/Weird, Sport, and Ed. Columns. Politics is surprisingly unpopular with less than 3.5% of the overall visits. We will show later that, despite notable variations, these results represent a behavior that is stable across time (Sec. 6) and space (Sec. 7). Table 4: Simulation of Top 11 most popular categories (percentage of interested surfers and households). --- Popularity according to various sources We now put in perspective the popularity we observe in usage data with the one that could be observed by other sources. For social media, we focus on Facebook and extract the subset of visits to news articles with Facebook as referral. We measure the popularity of various categories and report the results in the second row of Table 3. For usage data obtained from major news outlets, we similarly extract the subset of visits to such outlets. We present the results for Repubblica.it in the third row of the table. In the fourth row, we report the popularity of news categories as expressed by users in the Reuters survey in Italy (Newman, Levy, and Nielsen 2015). Note that with the exception of "Local" (somewhat included in Region in our case) and " Weird" (somewhat included in "Tragedies/Weird") news for which we do not have a perfect direct match in our editor-based categories, remaining categories have a suitable match in our dataset. Finally, we apply the same principle on the Published-articles dataset to measure category popularity among published articles in the last row. First, looking at news discovered on Facebook yields interesting differences with the overall usage data. For example, Sport news seem under-represented on Facebook with only 4% of visits originating from Facebook, whereas it represents 16% of visits in usage data. Tragedies/Weird on the other hand is over represented with 23% of popularity in Facebook against 16%. Other categories like Health (less than 1% when considering all visits) and People seem over represented on visits originated from Facebook. One possible explanation for these differences is that what people think valuable to share with others does not necessarily match what they themselves view. This explanation seems inline with a recent study in psychology that analyzed the neural correlates of message propagation (Falk et al. 2013). The study has found that people especially mentalized about what will be appealing to others when propagating a message. However, another explanation could be that the population that uses Facebook to discover news is different compared to the rest of the population. Further investigation is needed to understand these differences. Second, comparing with the popularity as seen by major news outlets, we also find noticeable differences. In the reported case of Repubblica.it, few categories like Ed. Column, International, Travel, Technology, Cars and Motos are particularly more popular compared to the entire data. This result suggests, at least, that relying on usage data from a single news editor is not representative of user consumption habits at large. Other outlets exhibit other differences. Our next comparison point is with surveys. At first sight, our usage data seems far from Reuters' (Newman, Levy, and Nielsen 2015) survey-based preference estimates for the same year in Italy. 7 Although 46% of users report being interested in Politics and 44% in Science, each of these categories accounts for less than 4% of the visits. The survey estimates are however expressed in terms of percentages of users. We perform various simulations to investigate in more details the differences between reported self-preferences and actual usage data in Sec. 5.2. Finally, to put these numbers further in perspective, we study the popularity of news categories in terms of number of published articles (and not visits). We remind that a direct comparison is thus not possible due to the difference of units. Interestingly, overall, the percentages of published articles seem to perfectly match the percentages of visited articles for many categories. There are, however, as in the previous cases, noticeable exceptions. Especially, Sport and to a lesser extent International and Science have higher popularity in terms of number of visits compared to published articles. Sport has indeed 16% of visited articles despite only 6.5% of published articles. International has also 7% of visits despite only accumulating 3.5% of published articles. Not shown in the table, only 1.9% of published articles are about Science but almost 4% of the views relate to Science. At the opposite side, the People category has a higher number of published articles (9%) than the actual fraction of visits it attracts (4.85%). Takeaway. First, usage data shows that Tragedies/Weird and Sport are by far the most accessed news categories. Despite being liked in surveys by almost one out of two users, Politics and Science attract less than 4% of visits. Second, none of the existing comparable sources of data can capture precisely the news category popularity at large when considering all visits from all users. Each of these sources yields a different popularity distribution that reflects the peculiarity of the data source. We next further investigate the difference between usage data and self-reported preferences in surveys. --- Usage Data versus Self Reports Although the Reuters survey was not conducted on the same exact set of users in our datasets, it was done on a small, yet representative sample of the population in Italy in the same year of our collection. To put both results in perspective and better contextualize our findings, we perform a more thorough comparison in this section. The Reuters survey counts the popularity in terms of number of users, we count it in terms of total visits. To make a fairer comparison, we run different experiments with the aim of estimating the percentages of users that are interested in each category based on our datasets. We consider surfers and households and assume that a surfer (household) "is interested" in a given category if it has viewed at least k times a news article from that category. We vary the threshold from 2 to 20 visits (in the entire 17 months) and compute each time the fraction of interested surfers (households) in each category, separately for each location and aggregated across locations. 8 For a fair comparison with the survey and to consider a worst case estimation, we obtain the fraction by dividing this number, not by the total number of surfers (households), but by the volume of surfers (households) which have shown interest in at least one category. Intuitively, when the threshold is low, category popularity is inflated, which gives us an upper bound on the number of surfers and households interested in each category. We report the results for two thresholds, for the entire same year as the survey, in Table 4. With k = 2 for surfers and k = 5 for households, we find that at maximum 10% of surfers and 24.08% of households are "interested" in Politics. These drop to 8.55% and 13.7%, respectively, when considering higher thresholds. Overall, unlike the survey report, Tragedies/Weird and Sport are still by far the most "interesting" categories for both surfers and households. Despite our lack of precise user identification, results in Table 4 show a strong mismatch between what users report to prefer and what they actually consume. We further discuss possible reasons in Sec. 8. Finally, to complement the above simulation, we study the distribution of visits per household. Fig. 2 shows the empirical distributions of visits to each category across households. The figure shows that there is a large variation amongst households for all categories. Yet, Politics and Science span much less users compared to Sport and especially Tragedies/Weird news. Takeaway. Unlike their preferences in surveys, users seem to consume news articles from more "catchy" categories such as Tragedies/Weird, Sport and Entertainment, while Politics, Science and Economy are far less popular. This result could reveal a social desirability bias that survey institutes should better account for. Other explanations are also plausible: (i) users actually prefer certain categories but cannot resist the "urge" of clicking on other appealing categories, (ii) users consume what the supply provides. The latter is, however, less plausible. First, there exists categories for which the demand does not match the offer (e.g., People has more articles than visits). Second, editors try to publish what they estimate attractive for users. We will further discuss these possibilities in Sec.8. The percentages of category popularity in our data are representative of the populations we study. Sub-sampling both surfers and households from this population does not change the popularity of categories. However, one question for us is how stable are these results in both space and time. We will explore this question in the next sections. --- Temporal stability We now study how stable is the popularity of categories over different hours of the day and across months. --- Over time of day Fig. 3(a) shows the percentages of visits per news category at various hours of the day. Fig. 3(b) complements it by showing the absolute numbers of visits for each category. Both figures are based on aggregated data, across the 17 months and various locations. We notice that, for the periods with the highest activity, i.e., from 9:00am till 11:00pm, the percentages of each category seem to be overall stable. There are however few curious variations. "Tragedies/Weird" attracts more visits than Sport in both percentages and total number of visits around midday, before leaving the first place to Sport during the afternoon. This trend continues till late at night where Sport reaches its highest share compared to "Tragedies/Weird" (e.g. 19% vs 13% at midnight). This could be due to the fact that sport events usually happen at night. Another noticeable variation is Science which reaches a peak around 6% between 8:00am and 9:00am then lays around 3% the rest of the day. Interestingly, the last two trends are observed in each location separately, including in residential areas, and resist to sampling (across households). Finally, notice the low number of users between 1:00am and 8:00am. Statistics during this period need thus to be interpreted with caution. Nonetheless, various locations curiously exhibited similar trends during this time: a much higher proportion of Sport compared to Tragedies/Weird and a rise of Entertainment. --- Over months Fig. 3(c) shows the percentage of visits to each news category at each month of 2015 in one of the locations. Fig. 3(d) complements it by showing the absolute numbers of visits, as well as the mean number of visits per active surfer during the month, a metric that approximates the activity of users during the month. The major decrease in August is due to holidays and people moving out of the cities. Analyzing the figures, we find that, although being overall stable, the popularity of a couple of categories varies depending on cyclic or special events of the year. For instance, Sport, which has the most noticeable variation, peaks around May and September, which correspond to the end and the beginning of the sports season. Travel and, not shown, Photo Gallery exhibit a peak around the summer vacation. The latter, by manual inspection, is boosted by photos of celebrities during their summer vacation. Entertainment peaks in February, boosted by a famous country-wide festival. Finally, International shows a peak around November 2015, the period of the terrorist attacks in Paris. During this period, the number of visits per surfer slightly increased but the absolute number of visits for all the remaining categories has decreased, suggesting that the Paris attacks event impacted the other categories. Finally, performing the same analysis on a weekly basis yield no unexpected noticeable behavior. Most of the time, the rankings and the overall popularity are comparable to the yearly data. Interestingly, a category like Politics was remarkably stable. During our 17 months of analysis, however, we were not aware of any major or local political event. To further explore this, we split the category popularity on a daily basis looking for peaks in the popularity of politics. We found 3 days in which Politics peaked up to 7% of popularity in all locations (and up to 10%, one of the days, in the campus trace). When further investigating, we found that these days preceded an Italian referendum in 2016, to which almost 16 million voters nation-wide participated. However, these small daily peaks did not have a remarkable influence on the monthly popularity of Politics. Takeaway. Although the exact popularity percentages of certain news categories slightly vary according to the time of day and regular or exceptional events of the year, they are overall stable in terms of ranking. --- Spatial stability We now study the stability of category popularity across our locations and hence also across different demographics since the campus network contains mainly a young population of students. Fig. 4 presents the top-10 categories for each location in terms of percentage of visits they attract. We see that news categories exhibit only slight differences across locations with few exceptions. ISP-City2-a and Campus-City2 both have a slightly higher percentage of Tragedies/Weird. However, these two locations have, in contrast to the two others, a majority of active users during day time, a period of the day where Tragedies/Weird is often slightly more popular regardless of the location as we saw previously. Campus-City2 users read more Sport and less People compared to the rest. Notice that in Campus-City2's university the number of male students is much greater than the number of female ones because the university hosts mainly engineering courses. This fact can explain why Sport is more popular in Campus-City2 than in other datasets. Finally, ISP-City1 has a higher share of Regional news. Takeaway. Despite differences in geographical locations, category popularities seem to be rather stable across our four vantage points. --- Informal discussion The comparison of users' self-reported preferences and actual usage data presented in Sec. 5 shows, for comparable categories, that there is a mismatch between preferred categories and popular ones. This difference is visible for both percentages of visits as well as the penetration in terms of users. Furthermore, the category popularity that we observe is not circumstantial. Indeed, with the exception of few events that slightly change the popularity of some categories, the popularity remains stable over time. Additionally, the popularity of categories is also rather stable across the various locations we study. This important observation leads us to wonder why preferences expressed by users differ from usage data, i.e., users' actual behavior. Unfortunately, our dataset alone can not help answering this question. Hence, we build on prior work to informally discuss two possible causes, which we run by two experts. This section reports these informal discussions. Further research is required to evaluate which of these possible causes explains these differences. The first possible cause is the so called social desirability bias, i.e., the tendency of survey respondents to answer questions in a manner that will be viewed favorably by others. Indeed, people might be "ashamed" of saying that they like "weird" news or news about violence or might have a better image of themselves if they show they are interested in more intellectual categories like Science and Politics. The second possible cause is that this dissociation is a "legitimate" difference between what people want, and hence do (e.g., click on link), and what they actually prefer (e.g., an expression of interest in a given topic). This possible explanation is inspired by the incentive-sensitization theory of addiction (Berridge and Robinson 2016;1998) in neuroscience. Individuals are driven by various rewards (e.g., food, sex, information or surprise). According to this theory, a reward has two components: Like, the pleasure one obtains from it, and want, i.e., how much one desires it, or how much effort one is ready to spend for it. Individuals may develop addiction to a given reward: The addictive behavior or substance hijacks the want system. The want, the motivational part of the reward becomes thus disconnected and higher than the like, the pleasure that the individual gets from the reward.9 Assuming that users' expressed preference coincides with their perceived "pleasure", i.e., their like, then we conjecture that the dissociation we observe might be telling of the addictive nature of certain news categories. In other terms, it could be that people do not like (anymore), for instance sensational news, but ended up being "forced" to click on them in a cue-triggered way, like in addiction. However, this latter explanation could be too simplistic because what is subjectively perceived as preference is probably complex and cannot be reduced to the pleasure that individuals get from a "simple" reward like drugs. Other aspects like self-knowledge or self-image might enter also into play to guide people defining what is valuable. For instance, the need to maximize feelings of self-esteem can lead to the wish of reading noble or serious categories like Science and Politics. To shed more light on this, we contacted Prof. Rasmus Kleis Nielsen, who is one of the lead authors of the Reuters Institute report (Newman, Levy, and Nielsen 2015). We asked for his feedback about our findings and whether he thinks that the mismatch we observe could be due to a social desirability bias. He stated that he is not surprised by the difference between surveys and usage data results. Interestingly, he provided an interpretation of our finding that goes in the direction of the second possible cause, i.e., what people do must not necessarily follow what they prefer. Concerning the response bias, he replied that surveys are designed in such a way to minimize any kind of biases, so he would not support the first hypothesis. Indeed, prior to fielding surveys, a large effort is spent by Reuters and its partners all over the world to test for various issues, including social desirability bias. He also pointed us to work by Prior (2009), which demonstrates that self-reports immensely over-estimate news exposure. We additionally contacted Prof. Kent C. Berridge, one of the two biopsychologists/neuroscientists who formulated the incentive-sensitization theory of addiction. We asked for his feedback about the second possible cause. Prof. Berridge said he thinks our second conjecture is correct: the dissociation between individuals' cognitive values, on one hand, and cuetriggered attraction, on the other, is probably what causes the mismatch we observe. As such, for him, the expressed news preferences reflect people's cognitive judgments about value (one of which is probably influenced by self-image) whereas their actions reflect their motivational-driven choices. Finally, he further added that this is "probably a little different" from what happens in the mesolimbic dopamine system in the brain that causes a dissociation between want and like for the same thing, as it happens when engaging with addictive behavior. Finally, it is worth noting, that regardless of the reasons, the popularity of "Tragedies/Weird" news in our datasets seems in line with the history of news consumption where sensational news have been the most popular categories since ancient times (Stephens 2006). --- Conclusion In this paper, we analyzed 80 million news visits to 5.4 million news articles, extracted from a dataset of 17 month long anonymized HTTP traces. We focused on the popularity of news categories in this dataset and put it in perspective with the category popularity in four other sources: what is discovered on Facebook, what is observed by major news outlets, what is published, and finally user preferences expressed in surveys. The results of our analysis show that news consumed in social networks represent a small fraction of the overall news consumption and that none of the existing sources can faithfully capture news-category consumption at large. Interestingly, our results further demonstrate that the analysis of usage data complements survey-based data with new insights. Indeed, by putting survey-based results in perspective with usage data, we observed a clear mismatch between news categories which users claim to prefer and those they actually visit. We conjectured that this can be explained by a disassociation between individuals' cognitive values and their cue-triggered attraction.

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The church bridge project focus group results: African American perspectives of weight management programs to improve nutrition and physical activity behaviors

The prevalence of obesity is disproportionately high among African Americans in the Southern US. More information is needed about factors that influence participation in nutrition and physical activity programs to promote healthy weight. Objective: The purpose of this study is to explore the weight management perceptions of young to middle aged adult African Americans.The Church Bridge Project intervention participants were recruited for two focus groups. Qualitative data were recorded, transcribed and a thematic content analysis was conducted to identify major themes. Results: Barriers included technology learning curve/burden and competing priorities. Facilitators included support, limited cost, convenience, and health. Participants perceived the term "weight management" program as overwhelming and defeating.The Church Bridge Project model confirmed social support and disease prevention as key factors for weight management. Further work should substantiate social support as a key factor to guide minority health efforts.

Background Obesity and chronic disease behavior management can be especially challenging in rural areas in the Deep South. Nearly half of the rural population in the United States (U.S) resides in the South [1], and in states such as Mississippi where a large percentage (79%) of counties are classified as rural [1], the percentage of obese residents (37.3%) is among the highest in the region [2]. Further, the state of Mississippi has greater Black population density (37.8%) compared with other Deep South states including Alabama (26.8%), Louisiana (32.6%), and Georgia (32.2%) [3] as well as a stark difference between the proportion of Black (29%) and White (10%) populations living below poverty levels [4]. Mississippi has a history of being medically underserved with a majority of the state designated as a primary care provider health professional shortage area [5]. Therefore, it is difficult to reach rural and remote populations with few available resources to support health education and management. Community-and church-based programs have been effective in improving health outcomes and reaching minority and underserved populations. However, greater program attendance is key for better health outcomes as shown in previous church-based intervention research [6,7]. Additionally, various types of social support, including general, religious and church social and instrumental support, have been associated with improved diet and physical activity behaviors among minority and rural communities [8,9]. Social support may be crucial for engaging minorities in healthy behaviors compared to Caucasian counterparts [10] and technology may facilitate the support of health program participants. The supportive policies for the provision of telehealth/-medicine, including coverage and reimbursement, point toward the potential for Mississippi to be a model state for the use of technology in health behavior management programs [11]. Thus, the Church Bridge Project was developed and tested over a two-phase intervention among African Americans living in southern Mississippi [12]. This research was intended to support the need for adoption and implementation of weight management interventions, focusing on diet and physical activity education and behavior change, among minority communities in the South. The purpose of this study was to examine program acceptability, barriers, and facilitators of participation in a church-based weight management intervention among young to middle-aged adult African Americans in southern Mississippi. Additionally, this research explored perception about weight management programs and the use of technology in weight management programs. --- Methods Focus group research was selected as the methodology for this study to gain collective information and rich understanding from a population that was reached (and either participated in the program or not) to enroll in a church-based weight management program that was not captured by our quantitative outcomes [13]. Focus groups were conducted after conclusion of the Church Bridge Project weight management intervention that was implemented in two churches from February 2017 to September 2017 [14]. The weight management intervention program included 12, 1-h group-based sessions that entailed a 20-min education component, 20-min motivational interviewing component and 15-to 20-min snack and social component. Eligible focus group participants were those determined at intervention enrollment to be overweight/obese based on BMI and self-identified as being African American between the ages of 18 and 50 years of age. The participants were recruited from a referral and enrollment database of potential participants developed for the intervention study [14]. The two types of participants recruited for the focus groups were classified as intervention "completers" and "non-participants." "Completers" were defined as individuals who successfully completed the intervention program. "Nonparticipants" were defined as individuals eligible for the intervention, approached to participate and enrolled in the intervention but did not participate in the intervention sessions. Two focus groups were conducted for "completers" and for "non-participants" with a goal to recruit six to eight participants each. This sample size goal is in alignment with widely accepted sample size recommendations [15]. Potential participants for each focus group were contacted via telephone, invited to participate and given a verbal overview of the focus group purpose and processes. All study protocol and materials were approved by The University of Southern Mississippi Institutional Review Board. This study follows the guidelines set forth in the Belmont Report which require that human research subjects, a) will not participate in research unless and until they have given voluntary and informed consent, b) confidential information received from participants will be fully protected within the limits of the law, both during and after research is conducted, d) subjects may withdraw their participation at any time without penalty or loss of benefits to which they would otherwise be entitled, e) burdens put on research participants must be reasonable relative to anticipated benefits to themselves and to society as a whole, f) the selection of research participants must be equitable and defensible in terms of both the goals of the research and general considerations of fairness. Upon arrival, focus group participants were assigned a random number to maintain confidentiality. Research staff reviewed the study consent information and obtained consent to participate after all questions were answered. The focus groups were conducted by two trained research assistants with one serving as a moderator and the second as a note-taker. A script was provided that served as a guide for the focus groups, which included study overview and procedures related to how the focus group was to be conducted and recorded. After providing informed consent, participants were informed that a digital voice recorder would record the conversation until the end of the session. Each focus group lasted approximately 1 h. The "completer" focus group included open-ended questions related to barriers and facilitators to participation in a weight management intervention and suggestions for program improvement, whereas the "non-participant" focus group included questions related to weight management program perceptions as well as barriers and facilitators to participation and the use of technology in a weight management intervention. Focus group participants were given a $25 gift certificate to a superstore at the completion of the session. Our qualitative research process was guided by the four tenets of trustworthiness: credibility, confirmability, transferability, and dependability [16]. After the focus groups were completed, recordings were transcribed by one research assistant and reviewed for accuracy by a second. Data analysis was conducted using a series of steps [17] based on Braun and Clarke's six-step framework for thematic content analysis [18]. The initial transcription and review of the data by two staff was considered to be first step to "become familiar with the data." All notes or initial thoughts regarding the data were noted and recorded by each research staff. The next step involved the generation of initial codes which followed a theoretical and open coding approach. This included developed and modified codes assigned to pieces of text from the data that were related to the research question and interesting. The third step was to examine the initial codes and search for common themes across the codes that identified something significant about the data. These initial steps described were conducted independently by two staff. In the next step, the two staff met to compare and review the themes each one developed, discuss common and divergent themes, and review whether data supported the proposed themes and if there was any overlap between themes. Staff developed a final, refined single list of themes which were subsequently reviewed by the larger team of staff and investigators. Research staff and investigators together reviewed and discussed the draft themes and developed the final list of themes to include in the final results. As data were analyzed, we also considered saturation of the data and defined saturation based on theoretical saturation or the emergence of new themes in the data [19]. Theoretical saturation for this project was "the point where no new codes are emerging in the data [19]." In alignment with grounded theory development guidance [19,20], we also considered saturation as the justification for termination of analysis. In consideration of data saturation, we also considered prior theoretical work [14]. --- Results A total of 12 individuals (n = 6 "completers" and n = 6 "nonparticipants") participated in two focus groups. Themes were identified based on barriers and facilitators to and suggestions for improvement of the weight management program as well as diet values and weight management program perceptions. Table 1 provides integrated results of main themes identified. --- Barriers identified by "completers" Two themes for weight management program barriers were identified by "completers": 1) technology learning curve, and 2) competing priorities. Participants found it difficult to locate specific food items or activities in the mobile app to log their nutrition and physical activity behaviors. However, the technological barrier was viewed as something that could be overcome with time with one person stating "… but I got into how to do it and stuff, and I learned how to do it so it wasn't too bad …" It was agreed by all participants that the main barriers When asked what would motivate them to participate in a nutrition and physical activity program, limited cost and convenience were identified. Additional motivators identified were health benefits to include pre-existing health conditions and overall health status. Pre-existing conditions were chronic diseases, including high blood pressure and diabetes. Overall health status included both mental and physical health. One participant explained: "Right now, what's motivating me is my health. The second thing motivating me is loss of self, because I look in the mirror and I go, 'Who is that person?' I don't recognize her because I've always been smaller my entire life. It's just the last 5 or 10 years that I've slowly continued to gain weight." "Non-participants" expressed that if they were able to participate in a program, they would hope to gain program support as accountability to achieve health goals. "Non-participants" also voiced technology could promote participation by providing support via being motivational, assisting with coaching, and providing reminders. Others expressed concerns with feeling burdened by needing to be consistent with using technology. Table 2 includes themes and sample coded text. --- Discussion This study examined perceptions about a weight management program delivered in a church-based setting that were useful for identifying factors related to the weight management intervention design and implementation. The themes gleaned from the focus groups suggested that the participants of the intervention, the "completers", had positive perceptions about the program. However, use of technology seemed to be both a barrier and facilitator of program success. Competing priorities were discussed as barriers to weight management program participation among both "completers" and "non-participants." Another theme involved the negative connotation associated with the "weight management program" terminology. Suggestions included framing the wording as a nutrition and physical activity program. Social support and personal health were also identified as key factors for the success of a weight management program. The results of the focus groups indicate that careful considerations are needed when incorporating technology into health intervention research. Mobile technology was viewed as a way to facilitate motivation, session attendance, and social support; however, a predominant theme among "completers" was that the food log function of the mobile application was difficult to use. A review of articles about dietary assessment using mobile phones found that six of the seven included studies reviewed had high participant satisfaction regarding use of mobile phones for dietary assessment [21]. The results of two additional studies also support the general acceptance of mobile food record methods among adults, including a community sample [22,23]. Prior research found that higher user satisfaction was associated with more accurate dietary intake reporting [24]; however, it --- Longevity and Improved Health "The better you eat, the better you feel, and the longer you'll be around for your kids. I have high blood pressure, but I'm on two different blood pressure medications and that was a wake-up call for me. I'm gonna get fit, I'm gonna eat right, or I'm gonna die. So, having nutrition and diet is everything." Perceptions of "Weight Management Program" --- Overwhelm and Defeat "Well for me, when I hear weight management, I think about all those negatives. I can no longer have, I feel deprived. I go to the negative part, instead of thinking about the positive partwhat it's going to do for me, the health and the finding myself again and all those different things. So, I don't think about the positive. It's all negative." Perceptions of "Nutrition and Physical Activity Program" --- Positive and Approachable "It's a little better than weight management because to me that sounds like exercise and eating healthy, the two … So when I look at the portions and eating healthy and exercise, the two, I think of that term." was not related to perceived participant burden to remember and log food intake [23]. Additionally, Krebs & Duncan [25] found that 44.5% of surveyed users discontinued using a health-related app because it took too long to enter data. Thus, while the use mobile applications for dietary assessment may be perceived as a satisfactory mode of data collection for participants, it may not reduce the perceived burden of data collection, which has data integrity implications. While mobile technology may not reduce data collection burden, the supplementation of behavior interventions with technology may assist with maintaining program intensity/contact and providing individualized participant support without increasing participant burden. A review indicated that technology-based weight loss interventions induced positive weight-related outcomes, enhanced social support and self-monitoring opportunities, and improvement in program adherence [26]. Our previous research as well as conclusions from another study [27] examining health-related virtual communities support the hypothesis that technology, by increasing convenience and access, can enhance perceived support, thus improving outcomes. As we found, simple strategies such as providing participants live-streamed access to sessions when they cannot physically attend may increase program support and maintain participant commitment to the program. Since previous churchbased intervention research studies have concluded that greater program attendance positively influences health outcomes [6,7], an important theme was that competing priorities serve as major barriers of program attendance by young to middle aged African American adults. Further research is needed to ascertain from the population what strategies might assist them with circumventing program participation barriers. Various types of social support (general, religious and church social and instrumental support) have been associated with improved diet and physical activity behaviors among minority and rural communities [8,9] and is crucial for engaging the population in healthy behaviors [10]. Preliminary work also identified that family support was associated with weight loss intentions among an African American population. A similar theme found in this study was that the "church family" was a motivating factor for program participants. However, research examining potentially beneficial health effects of perceived social support from church and group-based interventions is minimal. An additional theme, disease management and prevention objectives were identified as motivating factors of weight management program participation. It was interesting to note that although "non-participants" voiced a common theme of the importance of participating in weight management programs for health and longevity, they were not sufficiently motivated to actually participate in the program when offered. The relevant themes from the focus group data and previous literature support the importance of shifting the conversation about obesity from body ideals towards health in a culturally appropriate manner [12]. Challenges associated with this goal include perceptions among African Americans that obesity in itself is not an indicator of poor health [28], health is independent of obesity status [29], and "bigger is healthier" [30]. Other African American focus group participants have also viewed body mass index negatively [31] which corroborates our results of African Americans' preference to frame "weight management interventions" as "nutrition and physical activity interventions" to enhance healthy lifestyle determinants and diminish the focus on weight. This suggestion is supported by currently published concepts that individuals should focus on being healthy and not achieving a certain body weight ideal [31]. --- Limitations and strengths In alignment with the four tenets of trustworthiness of qualitive inquiry [16], our results were credible, transferable, dependable, and ultimately, confirmable. Credibility addresses the goodness of fit between the participants' ideas and the researchers' interpretation of those ideas. We used a multi-step approach that included research triangulation, or multiple observers, at various steps to define and confirm themes that represent the data and reduce potential biases. Code and theme development was also documented at every step and examined by multiple researchers during the refinement and finalization of themes. Transferability refers to the generalizability of the knowledge gained from the research. This study underpins the importance of addressing weight management from a disease prevention and preventive health perspective. Additionally, churchbased programs, compared to traditional medical settings, may be advantageously equipped with social support to facilitate diet, physical activity and other health behavior change goals. While our results are limited to an African American population in rural, Mississippi and a small sample size, these findings are not completely isolated in the literature and may have implications for other populations, especially across the Deep South. We also only conducted one focus group for each group type. Our research staff felt that they had saturated the pool of potential participants with recruitment efforts and did not feel further recruitment would yield enough participants for an additional focus group. Our sample does uniquely represent a predominantly younger to middle aged African American population, which will be a crucial target for health education and behavior programs to go beyond the management of disease toward the reduction of disease risk and ultimately, health disparities. Last, our research is both dependable and confirmable. Dependability refers to the research process in that it is clear and reproducible. Our steps are documented and in alignment with best practice guidelines for qualitative inquiry. Confirmability requires demonstration of how conclusions were reached which is met when credibility, transferability and dependability are achieved. Our study outlines a clear qualitative process for how themes were derived with multiple checkpoints and results have clear implications for weight management in a specified population, which may have implications for and guide research in other populations. --- Conclusion The findings from this study may help improve the development of lifestyle interventions intended for implementation among underserved, rural populations. The language used to describe weight management programs may deter participants and should consider a focus on the key factors identified by the population of interest (ie. improving nutrition and physical activity behaviors to achieve weight loss) versus the weight loss itself. Technology may serve to alleviate certain barriers and introduce others. Careful consideration of the population to be served and understanding technology related barriers is recommended to ensure that the pros outweigh the cons of use. --- Authors' contributions JL and PA were informed the design of the study and provided study oversight as well as were major contributors in forming the manuscript. RG, AB, and LB facilitated focus group implementation and analysis and were major contributors in informing the manuscript. LA and TG provided external review of the study and were major contributor in informing the manuscript. All authors read and approved the final manuscript. --- Funding Research reported in this publication was supported by the National Institute on Minority Health and Health Disparities of the National Institutes of Health (NIH) under Award Number R15MD010213 and Mississippi INBRE, funded by an Institutional Development Award (IDeA) from the National Institute of General Medical Sciences of the NIH under grant # P20GM103476. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. We would like to acknowledge other grant staff, intervention participants and community partners for facilitating this research. The authors declare no conflict of interest. --- Availability of data and materials The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request. --- Declarations Ethics approval and consent to participate All study protocol and materials, including consent information, were approved by The University of Southern Mississippi Institutional Review Board. The USM IRB complies with federal regulations, including Federal Policy for the Protection of Human Subjects and operates under a Federalwide Assurance (FWA) on file with the Office for Human Research Protection (OHRP, Registration number: FWA00002393) in the U.S. Department of Health and Human Services. Human subjects research conducted at or supported by the University honors the three ethical principles enshrined in the "Belmont Report": respect for persons, beneficence, and justice. These general principles require that human research subjects, a) will not participate in research unless and until they have given voluntary and informed consent, b) persons under the age of 18, legal incompetents, and those unable to consent may participate in research only with consent from a parent or legal guardian and, when possible, their assent, c) confidential information received from participants will be fully protected within the limits of the law, both during and after research is conducted, d) subjects may withdraw their participation at any time without penalty or loss of benefits to which they would otherwise be entitled, e) burdens put on research participants must be reasonable relative to anticipated benefits to themselves and to society as a whole, f) the selection of research participants must be equitable and defensible in terms of both the goals of the research and general considerations of fairness. --- Consent for publication Not applicable. --- Competing interests Authors report no competing interests. --- Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Subjective Social Status and Maternal Health in a Low Income Urban Population

Appropriate measurement of socioeconomic status (SES) in health research can be problematic. Conventional SES measures based on 'objective' indicators such as income, education, or occupation may have questionable validity in certain populations. The objective of this investigation was to determine if a relatively new measurement of SES, subjective social status (SSS), was more consistently and strongly associated with multiple health outcomes for low income mothers. Data available from a large scale community-based study examining maternal and infant health for a low income urban population were used to examine relationships between SSS and a wide range of postpartum physical and emotional health outcomes. Crosstabulations and multivariate analyses focused on the breadth and depth of these relationships; in addition, the relative strength of the relationships between SSS and the health outcomes was compared to that of conventional measures of SES, including both income and education. SSS was significantly related to all physical and emotional health outcomes examined. The overall pattern of findings indicated that these relationships were independent of, as well as more consistent and stronger than, those between conventional measures of SES and postpartum health outcomes. SSS represents an important dimension of the relationship between SES and postpartum physical and emotional health. In low income populations the failure to account for this dimension likely underestimates the influence of SES on postpartum health. This has important implications for the

Introduction The relationship between low socioeconomic status (SES) and poor health outcomes has been extensively documented through empirical research [1]. The nature of this relationship is, however, highly complex and the precise mechanisms through which SES translates into health disadvantages (for low SES persons) or advantages (for higher SES persons) are not fully understood [2,3]. One problem is that one's adult health status may reflect SES-related risk or protective factors which are cumulative in terms of their effects [4][5][6]. Thus point-intime indicators of adult SES such as income and educational attainment may not adequately reflect the influences shaped by one's SES during childhood, which either persisted or changed during the life course [7,8]. Other influences associated with SES may be difficult to quantify, including homeownership, indebtedness, family wealth, and dynamics operating at the community level such as one's network of social relationships [3,[9][10][11]. For the above-mentioned reasons, conventional indicators of SES (which typically refer to income, occupation, and/or educational attainment) may have poor construct validity, highlighting the need for a more critical and careful consideration of how SES is defined and measured in the context of health research [2,[12][13][14]. Some studies have demonstrated a significant relationship between SES and adult health when measures of SES are based on perceived social ranking, and that one's perceived status may provide a better conceptual/ measurement framework for exploring the associations between adult SES and health outcomes [9,10,15]. This may be, in part, because subjective measures are arguably 'global' in nature and account for one's understanding of the stability of their social status, as well as for the prospects of social mobility, while 'point-in-time' measures, for example, do not. [10,15] Consistent with findings from adult and child health research, low maternal SES has been shown to be persistently and pervasively related to adverse pregnancy and birth outcomes [16][17][18]. However, we are aware of only one published study that examined the relationship between SES and maternal health, defining SES in terms of a woman's perceived or subjective social status (SSS) [19]. In that study women who perceived their status as relatively low were found to be in relatively poor health, independent of their income and educational attainment. Moreover, among some ethnic groups, perceived status was reported to be more strongly related to maternal health than income and education. The study was, however, limited to only one measure of maternal health-namely, a woman's overall selfrated health status during pregnancy. The purpose of our investigation was [1] to assess the extent to which subjective social status is related to a wide variety of maternal health-related outcomes; and [2] to compare and contrast the magnitude of the relationship between subjective social status and maternal health outcomes to conventional measures of SES and maternal outcomes. --- Methods This research was part of a larger, prospective, community-based study examining maternal stress, birth outcomes, and maternal and infant health and health-related behaviors. The study involved recruitment of women who first enrolled for prenatal care at a consortium of six community health centers in Philadelphia, Pennsylvania, between February 2000 and November 2002. It was funded by the Centers for Disease Control and the National Institute for Child Health and Human Development and review for the ethical treatment and study of human subjects was approved by the institutional review boards (IRBs) at Thomas Jefferson University, Drexel University and the University of Pennsylvania. Subject consent was obtained through signed consent forms. Additional findings from, and more details about, the larger study are available elsewhere [20,21]. Women were recruited and interviewed at the time of prenatal care enrollment, and scheduled for three follow-up surveys in the subjects' homes, at approximately 3 months postpartum, 11 months postpartum, and at 24 months postpartum. Only information from the prenatal, 3 month, and 11 month postpartum interviews was used for the purposes of this study. Women with a singleton intrauterine pregnancy who spoke either English or Spanish were considered eligible for enrollment; among those, women with pregnancies ending in a live birth were designated for postpartum follow-up (n = 2,026). More than 98% (n = 1,984) agreed to participate in the follow-up phase of the study, and attempts to complete both the 3 month and 11 month postpartum surveys were successful for 67% (n = 1,322) of those who did agree. Data from the prenatal interviews indicated that women who did not complete the first two postpartum interviews (n = 562) did not differ from those who did with respect to income, education, marital status, or parity (data not shown). All interviews were based on structured surveys, conducted in English or Spanish by trained female interviewers. To minimize the chances of interviewer bias or misinformation each interviewer received approximately 30 h of training in use of this instrument, including instruction on when and when not to prompt women for responses, and how to explain the meaning of a question should any misunderstanding arise. The training included role playing and each interviewer was assessed and rated as competent by an experienced project supervisor before assignment to the field. For quality control purposes, a ten percent random sample consisting of 10% of all interviews from each interviewer were reviewed. Weekly meetings were held with the interviewers, project staff, and principal investigator (Dr. Jennifer Culhane) to discuss any issues related to the interviewing process. --- Study Variables Preliminary analyses of the data indicated that t he relationships between the health outcomes of interest and three primary measures of social status (SSS, income and education) were ordinal and non-linear in nature. For that reason women were ranked as either being of 'low'', 'medium' or 'high' for each variable, as described below. --- Subjective Social Status The surveys conducted at 11 months postpartum included the MacArthur Scale of Subjective Social Status, a measure which has been shown to be a valid and reliable indicator of one's perceived status in society [22]. Specifically women were presented with a "social ladder" with 10 rungs and were asked to rank themselves by placing an "X" on the step they felt represented their relative position in society at large. Each rung was numbered and the women were read the following statement: "In our society, at the top, are those who have the most money, education and best jobs; at the bottom are those that have the worse jobs or no jobs. Where do you think you fit in?" Their self-rank on this ladder, ranging from 1-10 was used as the basis for our measure of subjective social status (SSS). Women with a ladder score of 0 through 3 were classified as being in the 'low' SSS group; those with a score of 4 through 7 as being in the 'medium' SSS group; and those with a score of 8 through 10 as being in the 'high' SSS group. The distribution of SSS was approximately normal with a mean value of 5.9 and standard deviation of 1.85. The abovementioned cutoffs for 'low' and 'high' groups represent scores that were approximately 1.5 standard deviations below the mean and 1.5 standard deviations above the mean of 5.9, respectively. All others between 1.5 standard deviations above and below the mean were classified as being in the 'medium' SSS group. --- Objective Indicators of Social Status Several measures of the respondents' objective indicators of socioeconomic status were used in the analyses. The major indicators were educational attainment and personal income. Income was determined based on response to the question in the 11 month postpartum survey, which appeared as follows: "What is the total amount of money you received from all sources during a typical month?" Respondents were classified based on quartile rankings. Specifically, those in the first quartile of the income distribution for the sample (<$500 per month) were categorized as being the low income group; those in the second or third quartiles were categorized as the 'medium' income group ($500-$1200 per month), and those in the highest quartile ([>$1200 per month) were categorized in the 'high' income group. Educational attainment was measured in number of years of education, collected at the time of the initial interview along with other descriptive sociodemographic characteristics such as age, race/ethnicity, and parity. Women were grouped into three categories in terms of their education attainment: low (did not complete high school), medium (completed high school) and high (some college or more). Other variables representing measures of objective social standing that were included in the analyses were public assistance status (on food stamps or state cash welfare payments), homelessness (ever experiencing homelessness since childbirth) and ever having an involuntary utility (water, gas or electric) shut-off. --- Health Outcomes Several measures related to both the mental and physical health of respondents were available from one or both of the surveys and used as the dependent variables in the analyses. They included overall self rated physical and emotional health during pregnancy (reported by respondents at the 3 month postpartum interview) and overall physical and emotional health in the postpartum period (reported by respondents at the 11 month postpartum interview). All self reported measures of physical and emotional health were dichotomized, with respondents classified as being in relatively good (reporting 'excellent', 'very good', or 'good') as opposed to relatively poor (reporting only 'fair' or 'poor') health. Other measures of emotional health during the postpartum period used in the analyses included depressive symptomatology and perceived stress (reported at the 11 month interview). Depressive symptomatology was defined as a score of greater than or equal to 23 on the Center for Epidemiological Studies Depression Scale (CES-D). The CES-D is a pre-tested reliable and valid instrument used widely in studies of depression, including postpartum depression; scores of greater than or equal to 23 correspond to the 90th percentile in community samples and has been used by other researchers to define the presence of depressive symptoms in pregnant and postpartum women [23,24]. Perceived stress was based on the administration of the Cohen Perceived Stress Scale (PSS). The PSS possesses strong psychometric properties, including reliability across gender, socioeconomic status, age groups, race/ ethnicity, and other demographic characteristics [25]. This 14 item self report scale measures the degree to which a respondent appraises her life as being stressful. Women scoring below the 75th percentile (<28) were defined as having relatively low stress while those equal to and above that were classified as the relatively "high stress" group. In addition, women were classified in terms of whether or not they had one or more major health problems (heart disease, asthma, diabetes, or high blood pressure) and whether or not they had ever been told by a health professional that their pregnancy was 'high risk.' Additional data describing the health outcomes used as the independent variables in the analyis are available from the authors upon request. --- Statistical Analyses We first used simple cross tabulation techniques to examine and compare the relationships between all health outcomes and SSS, education, and income. Goodman and Kruskal's gamma was used to determine statistical significance, magnitude and direction of all relationships. Gamma is based on the correspondence among the rank ordering of observations for any pair of variables ordinal in nature, and is appropriate whenever the relationships are likely or purported to be ordinal, as is the case here. Gamma values are themselves both measures of the degree and strength of the ordinal relationships and are normally distributed for large sample sizes, and thus the calculation of P values is straightforward [26]. Logistic regression (LR) was then used to explore the effects of SSS vs. income, education, and other measures of SES described above on the health outcome variables. Specifically, a series of LR models were created with SSS, and additional SES indicators were entered in a stepwise fashion. In this way, the strength and robustness of the effects of SSS on health, independent of and in contrast to other measures could be quantified by comparing adjusted odds ratios. Confidence intervals associated with all effect parameters were also calculated and are presented in the tables and figures that follow. All analyses were completed using Stata 10.0 [27]. --- Results The sociodemographic and health characteristics of the study population are shown in Table 1. African-Americans comprised 70.6%, Whites 9.8%, and Hispanics 16.5% of the 1,322 women for whom the three surveys were available. The age range for this cohort was 13-43 years, with a mean age of 23.9 years. Almost 40% (39.3%) of the women did not graduate from high school, while 17.7% received at least some post high school education. Almost 65% (64.8%) of the women reported a total income of less than $1200 per month. More than 90% (93.6%) of the women reported receiving public assistance. More than 5% (5.2%) indicated that they had experienced a utility shutoff and over 2% (2.6%) reported being homeless at some point since their last childbirth. The distribution of the Subjective Social Status scale indicated that the vast majority of respondents perceived themselves to be average, despite median incomes ($800/month) well below that for the U.S. as a whole. Specifically, more than 7 out of ten (71.9%) placed themselves close to the middle (rung scores from 4 to 7) of the subjective status ladder. The relationships between subjective social status, income, and education with each of the health outcome variables are provided in Table 2. In general the associations between SSS and health are strong and persistent. Relatively poor overall physical and emotional health during pregnancy, the presence of major health problems, perceived stress and depressive symptomatology are all significantly and inversely related to SSS. For example, compared to women who rated themselves high on the SSS scale, those who rated themselves in the lowest category were more than twice as likely to report their overall physical health during pregnancy (24.6 vs. 11.4%), and their emotional health in the postpartum period (31.4 vs. 14.1%) to be relatively poor. Consistent with these overall self-reported items, women in the lowest compared to highest SSS group were more likely to have indicated one or more major health problems (45.6 vs. 30.8%), far more likely to be in the high stress category (50.4 vs. 20.9%) and to have depressive symptomatology (32.9 vs. 15.4%). Income and education were inversely related to some of the health outcomes, although not as strongly or as consistently as was the case for SSS. Physical health during pregnancy was unrelated to either income or education, while overall physical health was related to education but not to income. Overall emotional health in the postpartum period was related to both income and education, but overall emotional health during pregnancy was related only to income. As was the case for SSS, perceived stress and depressive symptomatology were related to both income and education, although the relationships were somewhat stronger for SSS. The results from the logistic regression analyses are presented in Tables 3 and4. Models A, B and C show the unadjusted odds ratios for SSS, Income and Education, respectively. Model D presents the odds ratios adjusted for income and education; and in Model E the odds ratios are adjusted for all additional measures of social status. Presenting the results in this manner allows us to compare the relative strength and robustness of the relationship between SSS and high stress (Table 3) and self-rated poor physical health (Table 4), when all other measures of SES are taken into account. As we can see in Table 3, the relationship between SSS and high stress is strong and persistent even after accounting for objective SES measures. Women in the low SSS category were far more likely than women in the highest category to have high stress levels, even after controlling for income and education (OR 3.66; 95% CI 2.25, 5.95). Even after adjusting for all other SES measures those in the low SSS category were still far more likely than those in the highest category to have high stress levels (OR 3.24; 95% CI 1.98, 5.30). Note that after adjusting for SSS, education is unrelated to high stress and income is only weakly related. Women in the lowest income group were somewhat more likely to have high stress levels compared to women with the most income after adjusting for SSS (OR 1.87; 95% CI 1.31, 2.68), but the effect size is considerably smaller than that for SSS. The relationship between SSS and self-rated physical health was also persistent even after accounting for objective SES measures (Table 4). Specifically, women in the low SSS category were far more likely than women in the highest category to rate their overall postpartum physical health as poor, even after controlling education and income (OR 2.15; 95% CI 1.16, 3.99). After adjusting for all other SES measures those in the low SSS category were still far more likely than those in the highest category to have relatively poor postpartum physical health (OR 2.04; 95% CI 1.09, 3.82). Note that after adjusting for SSS, income and education were unrelated to poor physical health. A summary of results for additional health outcomes is reported in Fig. 1. Adjusted odds ratios and 95% confidence intervals associated with low and medium compared to high SSS are presented, in each case after adjusting for income, education and all three other objective SES measures. The results show that for every other outcome, women in the low SSS category were significantly more likely to have worse health outcomes, even after adjusting for SES measures. Women in the low SSS category, for example, were 1.95 times more likely than women in the high SSS category to have depressive symptomatology (OR 1.95; 95% CI 1.1.12, 3.38) (Fig. 1a), as well as two times more likely to report being in relatively poor physical health in pregnancy (OR 2.53; 95% CI 1.34, 4.80) (Fig. 1b). --- Discussion The analyses of the relationship between our measure of subjective social status (SSS) and several emotional and physical health outcomes revealed the following: [1] SSS was related to all health outcomes; [2] this relationship exists independently of the influence of more conventional or objective measures of socioeconomic status; and [3] the relationship between SSS and health appears to be more robust than that for objective measures of socioeconomic status. Our findings are consistent with those from other studies of adolescent, middle-aged, and older populations [28][29][30] demonstrating a significant relationship between measures of subjective social status and overall physical health, independent of measures of objective social status. They also lend support to the notion that, in some cases, measures of SES based on subjective indicators may in fact be more sensitive than those based on objective indicators [3]. Measuring subjective social status may be particularly important, as is the case here, where the study population is relatively poor. Income levels, for example, may be relatively restricted in terms of the range of values in low income populations. Similarly, subtle but important differences along other dimensions of status-such as savings/wealth, the quality of education received, and access to social and community-level resources-may be overlooked. SES-related influences on health behaviors or outcomes may, therefore, go undetected. This highlights the concern raised by other observers, of the need to carefully consider how SES is defined and measured in the context of health research, and how problems associated with concept validity may have important implications for the interpretation of empirical results [2,3]. A great deal of empirical health research in the U.S., for example, is designed to assess racial/ethnic differences in health behavior and outcomes ''independent'' of SES differences. To a large extent, however, the integrity and the interpretation of these findings hinges on an adequate and appropriate measurement of SES itself [2,31,32]. In summary, our findings suggest that subjective social status may be a critical assessment tool for the measurement of socioeconomic status in low income populations. --- Study Limitations The findings are of course limited with regard to both the characteristics of the sample and the study design. As noted earlier the study sample was derived from data collected as part of a larger, longitudinal investigation of the relationships between maternal stress, prenatal and postpartum health and infant birth outcomes. The protocol for that larger study involved the administration of the SSS Scale at 11 months postpartum. At least in some cases SSS was related here to health measures collected at earlier points in time. As a result the extent of the causal nature of relationships between socioeconomic status, including those as measured by SSS, was beyond the scope of this paper to address. Recruitment for the larger study occurred at prenatal sites in very low-income urban neighborhoods and yielded a study cohort with a medium income of less than $10,000 per year. The extent to which the findings reported here can be generalized to poorer, or nonimpoverished populations is unclear; as a result further research may be warranted in order to establish the generalizability of our findings. Finally, it is worth noting that the criteria used to categorize the original SSS ladder scores into groups resulted in a relatively small percentage (10.3%, n = 137) of women being categorized as 'low'. Since it was possible that the findings may, therefore, have been partly a statistical artifact of an 'outlier', low SSS group, we replicated the analyses which included women with a ladder score of '4' in the low as opposed to medium SSS group. The pattern of results did not change, and the magnitude of the differences between the low, medium and high SSS groups for all the health outcomes was virtually identical to that reported here. --- Research Box --- What is already known about this topic Conventional socio-economic status indicators such as income and education may have poor construct validity in health outcomes research, especially in homogenous lowincome populations. --- What this study adds This study has strengthened the evidence that subjective self-assessment of one's social standing should be considered in any empirical study that explores relationships between socioeconomic status and maternal health outcomes. The relationship of subjective social status on health outcomes. a. Adjusted odds ratios: summary of effects of SSS on measures of emotional health; b. Adjusted odds ratios: effects of SSS on measures of physical health Relationship between heath outcomes and subjective social status (SSS), income, and education (GAMMA = --- Table 3 Logistic regression results: relationships between SSS, income, education, selected measures of impoverishment and high stress levels a

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Factors associated with receptive injection equipment sharing among people who inject drugs: findings from a multistate study at the start of the COVID-19 pandemic

Background Receptive injection equipment sharing (i.e., injecting with syringes, cookers, rinse water previously used by another person) plays a central role in the transmission of infectious diseases (e.g., HIV, viral hepatitis) among people who inject drugs. Better understanding these behaviors in the context of COVID-19 may afford insights about potential intervention opportunities in future health crises. Objective This study examines factors associated with receptive injection equipment sharing among people who inject drugs in the context of COVID-19.From August 2020 to January 2021, people who inject drugs were recruited from 22 substance use disorder treatment programs and harm reduction service providers in nine states and the District of Columbia to complete a survey that ascertained how the COVID-19 pandemic affected substance use behaviors. We used logistic regression to identify factors associated with people who inject drugs having recently engaged in receptive injection equipment sharing.One in four people who inject drugs in our sample reported having engaged in receptive injection equipment sharing in the past month. Factors associated with greater odds of receptive injection equipment sharing included: having a high school education or equivalent (adjusted odds ratio [aOR] = 2.14, 95% confidence interval [95% CI] 1.24, 3.69), experiencing hunger at least weekly (aOR = 1.89, 95% CI 1.01, 3.56), and number of drugs injected (aOR = 1.15, 95% CI 1.02, 1.30). Older age (aOR = 0.97, 95% CI 0.94, 1.00) and living in a non-metropolitan area (aOR = 0.43, 95% CI 0.18, 1.02) were marginally associated with decreased odds of receptive injection equipment sharing.Receptive injection equipment sharing was relatively common among our sample during the early months of the COVID-19 pandemic. Our findings contribute to existing literature that examines receptive injection equipment sharing by demonstrating that this behavior was associated with factors identified in similar research that occurred before COVID. Eliminating high-risk injection practices among people who inject drugs requires investments in low-threshold and evidence-based services that ensure persons have access to sterile injection equipment.

Background High-risk injection practices, such as receptive injection equipment sharing (i.e., injecting with syringes, cookers, rinse water that were previously used by another person), play a central role in the transmission of infectious diseases (e.g., HIV, viral hepatitis) among people who inject drugs (PWID) [1][2][3][4]. In the United States (US), there are an estimated 750,000 people who injected drugs in the past year [5]. Studies have found that the prevalence of receptive injection equipment sharing among PWID varies across the United States and has been associated with infectious disease outbreaks [6][7][8][9][10][11][12][13][14][15][16][17][18][19]. For example, a study conducted in Baltimore City (Maryland) found that 16% of PWID reported having engaged in receptive syringe sharing in the past month [7]. Another study conducted among PWID in a rural county in West Virginia found that 43% reported engaging in receptive syringe sharing in the past 6 months [9]. Similarly, a study conducted in Kentucky found that 30.2% of a sample of PWID living with viral hepatitis reported having recently engaged in receptive syringe sharing [4]. These and other findings underscore the continued need for comprehensive interventions that increase access to sterile injection equipment. Several decades of research have been conducted to better understand unsafe injection practices among PWID. For example, prior studies have identified that these behaviors are driven by the intersections of individual-and structural-level factors, substance use, social context, and policy [7,9,13,16]. Inadequate access to sterile injection equipment has also been associated with syringe sharing [20][21][22]. Mitigating the consequences of high-risk injection practices (e.g., infectious disease acquisition) may be achieved through the implementation of interventions that aim to increase access to sterile injection equipment, including syringe services programs (SSPs) [23][24][25][26]. However, many communities lack SSPs due to restrictive policies, community-level opposition, and inaccurate fears that they may increase substance use, crime, or syringe litter [20,[26][27][28][29][30][31][32][33][34][35]. Stigma and discrimination against people who use drugs also negatively affect the implementation and utilization of SSPs and other evidence-based response strategies, such as medications for opioid use disorder (MOUD). The COVID-19 pandemic had far-reaching effects on public health, including among PWID. In some instances, SSPs closed or modified their operations to reduce COVID-19 transmission risks [36][37][38][39][40]. Some SSPs also had inadequate staffing during the pandemic which led to decreased service availability, such as onsite HIV and hepatitis testing [36]. Further, pandemic lockdowns also resulted in reductions in syringe distribution and infectious disease testing [41]. Mental health issues (e.g., depression, anxiety, and loneliness) worsened among people who use drugs during the pandemic [37,42,43]. In terms of substance use disorder treatment, a 2022 study found that there were substantial reductions in in-person services, but policy changes that provided flexibilities in treatment delivery (e.g., increased take-home medications, counseling by video/phone, and fewer urine drug screens) were well-received among people with histories of substance use [44]. Other COVID-19 era research has found that PWID struggled to get appointments with HIV counselors and physicians and that access to preexposure prophylaxis diminished during the pandemic [45,46]. Although existing research demonstrates several ways in which the COVID-19 pandemic affected PWID, limited research has been conducted to understand its impact on high-risk injection practices. One study found that syringe reuse was more common during the pandemic [43], but this was limited to a sample of PWID in New York City and may not be generalizable to other settings. Given that receptive injection equipment sharing is strongly associated with infectious disease transmission among PWID, better understanding this behavior in the context of COVID-19 may afford key insights about potential intervention opportunities in the ongoing pandemic and in ensuring sustainable access to sterile supplies in the future. This study utilizes data from a multistate survey conducted in late 2020 and early 2021 to examine factors associated with receptive injection equipment sharing among PWID. --- Methods --- Study context From August 2020 to January 2021, study participants were recruited from 22 substance use disorder treatment programs and harm reduction service providers in nine states (Maine, Maryland, Michigan, New Jersey, New Mexico, New York, Pennsylvania, Tennessee, and West Virginia) and the District of Columbia. Most participating drug treatment programs and harm reduction providers were engaged in the Bloomberg Opioid Initiative (a campaign supported by Bloomberg Philanthropies that aims to reduce overdose rates). Staff at collaborating organizations distributed study recruitment cards to clients. Each card featured the study logo, the study phone number, and a unique study identifier (to reduce duplicate and non-client participation). Persons who were interested in participating in the study contacted the data collection team via phone and were subsequently able to ask questions and be screened for eligibility. Eligibility criteria included being at least 18 years old, a current client of a collaborating organization, able to provide informed consent, and able to provide an unused unique study identifier. Participants received $40 compensation via a pre-paid gift card or Venmo payment. Overall, 587 responses were collected. Given our interest in receptive injection equipment sharing among PWID, we restricted the analytic sample to participants who had injected drugs in the past month (n = 266). We further removed a transgender participant to ensure their anonymity was protected. This research was approved by the Johns Hopkins School of Public Health Institutional Review Board. --- Measures --- Receptive injection equipment sharing in the past month Participants answered two questions about their receptive injection equipment sharing behaviors in the past month. Participants indicated if they had used a syringe or needle after someone else had used it and if they had used other injection equipment, like cookers or rinse water, after someone else. These two indicators had a high degree of overlap (85% of persons who shared syringes also shared other equipment); as a result, we created a binary indicator for receptive sharing of any injection equipment in the past month. --- Sociodemographic characteristics Participants reported their age (in years), gender (man/ woman), relationship status (single/in a relationship or married), sexual orientation (heterosexual or straight/ sexual minority), education level (less than high school, high school diploma or equivalent, or some college or more), and employment status (full time, part time, not working). Participants reported their race and ethnicity, which we dichotomized to non-Hispanic White and Racial/Ethnic Minority (e.g., Black, Hispanic, Multiracial/ Multiethnic) due to sample size constraints. Participants further reported if they were currently homeless (yes/ no), if they experienced hunger (defined as going to bed hungry due to lack of food) at least once a week since the COVID-19 pandemic (yes/no), if they had ever tested positive for HIV (yes/no), and if they traded sex for drugs or money since the pandemic started (yes/no). Based on the county participants reported living in, we created an urbanicity measure using the National Center for Health Statistics Rural Classification Scheme (codes range from 1-large central metro to 6 -non-core). We created a three-category measure of urbanicity: large metropolitan (codes 1 and 2), small metropolitan (codes 3 and 4), and non-metropolitan (codes 5 and 6). --- Injection drug use in the past month We created binary indicators of whether participants reported having injected each of the following drugs/ combinations of drugs in the past month: cocaine, heroin, fentanyl, heroin and fentanyl simultaneously, speedball (cocaine and heroin simultaneously), methamphetamine, methamphetamine and heroin simultaneously, prescription opioids, tranquilizers, and buprenorphine (e.g., Suboxone). We also created a variable that reflected the total number of drugs/combinations of drugs injected in the past month. --- COVID-related drug use behavior changes We included four measures of drug use-related behavior changes during COVID-19. First, we asked participants to indicate how often they injected drugs per day during COVID-19 relative to the pre-COVID era (less frequently, the same, more frequently). Participants indicated how often they used drugs with others during COVID-19 relative to before the pandemic (less frequently, the same, more frequently). Participants further indicated if they used mostly in private locations during COVID-19 (yes/no) and if they had avoided accessing syringe services programs due to COVID-19 fears (yes/ no). --- Service utilization We included three binary measures of drug treatment engagement. First, we created an indicator for any pastmonth drug treatment. We then created two indicators for the type of treatment received: any MOUD (buprenorphine, methadone, or naltrexone) and any non-MOUD treatment. The treatment types were not mutually exclusive. We also asked participants whether they had acquired sterile syringes from a syringe services program in the past month (yes/no). --- Analysis We first estimated the prevalence of past month receptive injection equipment sharing in our sample. We used Chi Square and t-tests, as appropriate, to assess bivariate relationships between variables and receptive injection equipment sharing. We used logistic regression to identify factors associated with PWID having recently engaged in receptive injection equipment sharing. We considered all correlates of receptive injection equipment sharing at the p < 0.2 level for inclusion in multivariable logistic regression analyses. We elected to utilize the number of drugs injected instead of individual drug measures to achieve a more parsimonious model. We further excluded two variables (homelessness and MOUD treatment) from the multivariable model due to collinearity with other included variables (hunger and any drug treatment, respectively). In the multivariable logistic regression model, standard errors were clustered by the provider participants were recruited from to account for study design. Statistical analyses were performed using Stata 17 (StataCorp, College Station, TX). --- Results The average age of the sample was 39 years old (SD: 10.5). Half (50.2%) the participants were women and 62.9% identified as non-Hispanic White (Table 1). Fourteen percent identified as a sexual minority. Few (4.9%) reported having HIV. Over half (56.8%) of participants were in a relationship. Having a high school education was the most common education level (45.7%); the prevalence of having less than a high school education (27.2%) or some college or more (27.2%) were similar. Most (85.3%) participants were not working. About onequarter (27.7%) of participants were homeless and onethird (34.3%) reported weekly hunger. Urbanicity level varied (39.0% large metropolitan, 37.5% small metropolitan, 23.5% non-metropolitan). Approximately eleven percent (10.6%) reported engaging in transactional sex. On average, participants reported injecting three drugs in the past month. Most (85.6%) had accessed an SSP in the past month. One-third (32.1%) of participants reported more frequent drug injection during COVID-19. Just under half (46.0%) had received drug treatment in the past month. One in four participants reported having engaged in receptive injection equipment sharing in the past month. At the bivariate level (Table 1), participants who reported receptive injection equipment sharing were significantly younger than persons who did not (p = 0.04). Participants who identified as sexual minorities (p = 0.03), as non-Hispanic White (p = 0.004), experienced hunger at least weekly (p = 0.04), and who engaged in transactional sex (p = 0.02) were significantly more likely than their counterparts to report receptive injection equipment sharing. Participants with a high school education were more likely to report receptive injection equipment sharing than participants with other education levels (p = 0.01). Use of speedball (p = 0.03), methamphetamine (p = 0.003), and methamphetamine and heroin (p = 0.005) were all significantly associated with receptive injection equipment sharing. Participants who reported receptive injection equipment sharing, on average, used significantly more drugs than persons who did not (p = 0.006). Individuals who reported increased injection frequency during COVID-19 were significantly more likely to report receptive injection equipment sharing than persons who reported the same or less frequent injection (p = 0.02). In the multivariable model (Table 2), having a high school education or equivalent was associated with greater odds of receptive injection equipment sharing compared to having less than a high school education (adjusted odds ratio [aOR] = 2.14, 95% Confidence Interval [95% CI] 1.24, 3.69). Experiencing weekly hunger (aOR = 1.89, 95% CI 1.01, 3.56) and number of drugs injected (aOR = 1.15, 95% CI 1.02, 1.30) were also associated with greater odds of receptive injection equipment sharing. Older age (aOR = 0.97, 95% CI 0.94, 1.00) and living in a non-metropolitan area (aOR = 0.43, 95% CI 0.18, 1.02) were marginally associated with decreased odds of receptive injection equipment sharing. --- Discussion Using data from a geographically diverse sample of PWID during the early months of the COVID-19 pandemic, we found that approximately one in four participants reported having recently engaged in receptive injection equipment sharing. Factors associated with greater odds of recent receptive injection equipment sharing included experiencing hunger, number of drugs injected, and having a high school diploma. Our findings contribute to existing literature that examines receptive injection equipment sharing by demonstrating that this behavior was associated with factors identified in similar research that occurred before COVID-19 [7,9,47,48]. Eliminating infectious disease transmission among PWID will require novel, low-threshold interventions (e.g., peer-led SSPs, harm reduction vending machines, no-cost access to mail-order harm reduction supplies) that ensure PWID have access to sterile injection equipment during times of co-occurring crises. We found that 34% of our sample reported experiencing weekly hunger and that hunger was associated with greater odds of receptive injection equipment sharing. These findings parallel similar research conducted among PWID before the COVID-19 pandemic. For example, food insecurity has been associated with PWID engaging in high-risk behaviors (e.g., syringe sharing, condomless sex) for HIV/STI acquisition in prior research [9,[47][48][49]. For PWID with insufficient food access, obtaining food may compete with persons' engagement in health-promoting behaviors, such as always using sterile injection equipment. It is also plausible that hunger is a proxy for a mosaic of structural vulnerabilities (e.g., homelessness, unemployment) and having less agency to engage in risk minimizing behaviors. Among PWID living with HIV, research has also shown that inadequate food access increases severity of infectious diseases [50,51]. Communities should work to guarantee no person struggles with hunger. Strategies to mitigate hunger among PWID, and communities more broadly, should be holistic in nature given the overlapping nature of hunger with other structural vulnerabilities, including homelessness. Comprehensively addressing structural vulnerabilities among PWID may carry significant public health benefits via supporting reductions in high-risk injection behaviors. Future work should be conducted to identify exemplar models of care that integrate the provision of harm reduction services and food access. Notably, there are examples of service providers that integrate food provision and harm reduction [52][53][54]. Similar to research conducted before COVID-19, we found that the number of drugs PWID injected was positively associated with receptive injection equipment sharing [9]. This finding may be partially explained by associated needs for sterile injection equipment, i.e., persons who inject more types of drugs may require larger volumes of sterile injection equipment, including syringes. Given that the COVID-19 pandemic reduced access to SSPs, it is also plausible that PWID may have had challenges ensuring they had a sterile syringe and other supplies for each injection [55]. Further, many communities lack SSP access, potentially exacerbating risks for receptive injection equipment sharing [26]. Future work should be conducted to develop innovative strategies that afford PWID reliable and low threshold access to sterile injection equipment. Exemplar strategies to increase access to sterile injection equipment may include public health vending machines, mail order injection supplies, and distributing supplies at retail venues (e.g., pharmacies). Peer-based SSPs may also be particularly effective at reaching vulnerable PWID [56,57]. We found that living in a non-metropolitan area was marginally associated with decreased odds of recent injection equipment sharing. This finding warrants additional study given that many injection drug use-associated HIV outbreaks in rural communities have occurred in recent years [17][18][19]58]. Further, analyses that examined risks for injection drug use-associated HIV outbreaks identified many rural counties throughout the United States as vulnerable [59]. Though methodological differences limit comparability across studies (e.g., we recruited PWID who accessed services at drug treatment and harm reduction programs, which may be of limited availability in non-urban areas), receptive injection equipment sharing has been shown to be a relatively common phenomenon among rural PWID [3,13,15,60,61]. Our finding that non-metropolitan residence was associated with decreased odds of recent injection equipment sharing may also reflect both the considerable heterogeneity in where we recruited participants as well as how we operationalized urbanicity. Nevertheless, future studies should be conducted to more comprehensively understand factors associated with receptive injection equipment sharing among rural PWID and if these relationships are affected by the degree to which persons access drug treatment and harm reduction services. It is important to interpret the findings of this study relative to its limitations. Our outcome focused on PWID engaging in receptive injection equipment sharing in the past month. As such, we are only able to glean a snapshot of receptive injection equipment sharing among our participants rather than more comprehensive examinations of this behavior and how it may vary by context over time. Additionally, there is considerable variation in how high-risk injection practices are measured in the literature, limiting our ability to make direct comparisons. Due to sample size limitations, we trichotomized our measure of urbanicity. More robust sample sizes may afford nuanced analyses across the urban-rural continuum. In addition, we found that education was significantly associated with receptive injection equipment sharing; however, this finding should be interpreted with caution given both sample size constraints and our sampling strategy. Future lines of scientific inquiry should explore the role of educational attainment and engagement in high-risk injection practices. Efforts should also be undertaken to ensure PWID receive evidence-based education about the risks of sharing injection equipment. Another potential limitation relates to sampling bias given that we recruited persons from substance use disorder and harm reduction service providers in nine states and the District of Columbia. Our findings should not be considered representative of PWID across the US, nor reflective of the experiences of PWID who do not access substance use disorder treatment facilities or harm reduction services. Though our study is not without limitations, it contributes to the public health literature by examining factors associated with receptive injection equipment sharing among a sample of geographically diverse PWID during the early months of a global pandemic. In conclusion, we found that a quarter of PWID who were connected to drug treatment and harm reduction service providers reported receptive injection equipment sharing during the early months of the global COVID-19 pandemic, and that these behaviors varied according to education level, hunger, urbanicity and number of drugs injected. We also found that PWID residing in non-metropolitan communities had marginally decreased odds of receptive injection equipment sharing. Factors associated with receptive injection equipment sharing in our study had both similarities and differences to prior research. The COVID-19 pandemic affected risks for infectious disease acquisition among PWID throughout the world, and our results shed light on the high-risk injection practices among PWID that contributed to enduring infectious disease risks during the pandemic. --- Availability of data and materials Deidentified data that supported the findings of this study are available upon reasonable request. --- Abbreviations --- SSP Syringe services programs PWID People who inject drugs HIV Human immunodeficiency virus Author contributions STA, MM, SJH, BS, and SGS were involved in the conception of the study. STA and KES were involved in the analysis. All authors were involved in the interpretation of the findings. All authors were involved in drafting the manuscript. All authors reviewed and approved the final manuscript and agree to be held accountable for all aspects of the work. --- Declarations Ethics approval and consent to participate The study was approved by the Johns Hopkins Bloomberg School of Public Health Institutional Review Board. --- Consent for publication Not applicable. --- Competing interests The authors report no conflicts of interest. • fast, convenient online submission • thorough peer review by experienced researchers in your field • rapid publication on acceptance • support for research data, including large and complex data types • gold Open Access which fosters wider collaboration and increased citations maximum visibility for your research: over 100M website views per year --- • At BMC, research is always in progress. --- Learn more biomedcentral.com/submissions Ready to submit your research Ready to submit your research ? Choose BMC and benefit from: ? 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38f7879d4a603089b97a37de2c0012a8299bf371

Wealth, household heterogeneity and livelihood diversification of Fulani pastoralists in the Kachia Grazing Reserve, northern Nigeria, during a period of social transition

A mixed methods study was undertaken in the Kachia Grazing Reserve of northern Nigeria. Surveys in March, June and October 2011 included focus group discussions, key informant and in-depth household interviews, concerning livelihood practices, animal health, ownership, and productivity. In May 2011, 249 Fulani families fleeing post-election violence entered the reserve with their livestock, increasing the number of households by one third.Despite being settled within a grazing reserve, over half of households sent all their cattle away on seasonal transhumance and another third sent some away. Cattle accounted for 96% of total tropical livestock units (TLU), of which 26% were cattle kept permanently outside the reserve. While all households cited livestock as their main source of income, 90% grew crops and 55% derived income from off-farm activities. A multiple correspondence analysis showed that for each extra member of a household its TLU value increased by 2.0 [95% CI, 1.4-2.7], while for each additional marriage its TLU increased by 15.7 [95% CI,. A strong association was also observed between small herds, small households with only one wife, alongside marked geographical wealth differences within the reserve. New immigrant families had larger household sizes (33) and livestock holdings (122 TLU) than old settlers (22 people and 67 TLU). Prior to the mass immigration, the distribution of TLU per person was unimodal: 41% of households were classified as 'poor' and 27% as 'medium', whereas post-immigration it was bi-modal, with 26% classified as 'very poor' and 28% as 'medium'.

Introduction The Fulani peoples are the major pastoralist group across West Africa and have dominated cattle production in Nigeria for centuries [1]. Also known as Fulbe pastoralists, their population in Nigeria is estimated at 15.3 million [2]. In the late 1980s Fulani were estimated to manage 90% of Nigeria's ruminants [3]. A 1992 livestock survey found that Fulani pastoralists, the great majority of whom have now settled, grow crops and practice a form of limited seasonal transhumance, kept 83% of the cattle in Nigeria. Many arable farmers also practice animal husbandry. Traditional management in and around rural villages by non-Fulani accounted for 17% of cattle. Only 0.3% cattle were reared on commercial holdings in a peri-urban or urban settings [4]. Village and urban cattle keeping is increasing as business people invest in the current agricultural revolution in Nigeria and the local 'indigene' populations learn herd management skills from the Fulani. In 2014, the ruminant population of Nigeria was estimated at 19.4 million cattle, 40.6 million sheep and 71.0 million goats [5]. Traditionally, Fulani practiced year-round nomadism, partly in response to the need to migrate away from the high infection challenge presented by tsetse flies. Before the 1950s, herds from the northern savannah zone only grazed in the sub-humid zone further south during the dry season, when the risk from trypanosomiasis was lower. Since the 1950s there has been a southwards shift into the sub-humid zone for year-round grazing with Fulani pastoralists occupying 5% of the rural population of what was an inhabited zone. By 1988 it was estimated that the dry season cattle population decreased by approximately 40% in the wet season [6] indicating that an increasingly year-round population was present in this zone. Expansion of cultivation has reduced suitable tsetse habitat, making the area more hospitable to livestock keepers [7]. An increasing number of Fulani are giving up the wet season migration northwards, to engage in mixed crop/livestock farming and a more settled lifestyle [8]. Most Fulani now have permanent homesteads and practice only short-range dry and wet season transhumance, in part due to diminishing access to rangelands from farming pressure, increasing conflicts and insecurity [1]. Grazing reserves were established in Nigeria in the 1960s to encourage pastoralist sedentarisation [9]. The reserves were anticipated to increase productivity, providing critical resources for livestock keeping (water and land tenure) and access to markets, and to reduce clashes between pastoralists and crop farmers driven by competition for resources. The Kachia Grazing Reserve (KGR) was established by the Kaduna State Ministry of Animal and Forest Resources in 1967 to settle nomads in one location to improve their standard of living; to improve the quality of livestock produced; to reduce conflict between nomads and farmers and to provide an area for research [10]. The KGR is home to some 10,000 Fulani pastoralists and their 40,000 cattle. In May 2011, a month after the presidential election, KGR experienced a sudden influx of displaced families fleeing violent clashes in their areas of origin [11]. The study objectives are two-fold. Firstly, we describe and assess variation in KGR household characteristics in terms of the household head, wives and marriages, livelihood strategies, livestock keeping, crop farming, off-farm sources of income, mutual assistance and genderedwealth holdings. Secondly, we explore whether livestock and wealth are equally distributed among KGR households, and if not, what variables account for the variation seen across households. The KGR, the first grazing reserve to be established in Nigeria, is representative of Fulani livelihood diversification, wealth and household heterogeneity in a grazing reserve setting. Analysing the social and economic make-up of grazing reserve communities and their resilience to social change is pertinent because of the societal and political lobby for sendentarisation of pastoralist populations. Pastoral livelihoods are in a transitional state and understanding the household economy is crucial in achieving sustainable and effective development initiatives. --- Study site The KGR is situated in Kaduna State, north central Nigeria, and comprises 31,000 hectares between latitudes 10˚03'-10˚13'N and longitudes 7˚55'-8˚06'E. KGR lies within the sub-humid zone, 700-900 m above sea level and is fed by the Kaduna River. KGR exhibits northern Guinea Savannah woodland vegetation. The climate is tropical sub-humid, with a wet season running from June-October and dry season between November-May. The average temperature is 28˚C (minimum of 19˚C in January and maximum of 39˚C at the start of the rains). KGR settlers are exclusively Fulani pastoralists. The KGR 'district' is called Ladduga or 'bush' in Fulfulde and the KGR headquarters and trading centre is called Tampol (after the tarpaulins that covered the first market stalls). Administratively, KGR is divided into 6 blocks. Block 2 is large and diverse, geographically, and is subcategorised into 2A and 2B (Fig 1). KGR has 9 Ardos or village heads, each representing a clan. The settlement areas within the blocks are named after the clan elder. --- Study design This mixed methods study comprised three comprehensive livelihoods surveys undertaken within KGR during 2011: March (mid-dry season), June (beginning of wet season) and October (end of wet season). This approach enabled themes to be covered not only through administration of questionnaires at different time points and to different cohorts of households/individuals but also through application of a range of different participatory research methods. Triangulation was employed to validate the repeatability of data obtained and ensure better reliability of evidence. This method also ensured that variations in characteristics, knowledge, perception and practices were captured. The household was the primary unit of assessment. In July 2010, a state census undertaken by the KGR Project Office recorded 581 households in KGR. For the survey undertaken in March 2011, 64 households were randomly selected from this total. In May 2011, one month after the presidential election, KGR experienced a sudden influx of displaced families fleeing violent clashes in their areas of origin. In total, 249 families (3,000 people) moved into the reserve with their livestock (20,000 cattle, 5,000 sheep and 1,500 goats). A census undertaken in June 2011 provided a revised figure of 777 households with a human, cattle, sheep and goat population of approximately 10,000, 40,000, 10,000 and 5,000 respectively [11]. Of the 752 households for which data on the year of settlement in KGR are available, 28.2% were established in the KGR before the period of inter-communal violence that began in the early 2000s. A further 38.7% settled in KGR between 2001 and 2010 and 33.1% of all households had moved into KGR in May 2011. Of these 249 households, all were inhabiting the reserve in October 2011 intending to settle permanently. In this study, households that moved into KGR during the mass immigration event of May 2011 are referred to as 'new immigrant' households and the remainder as 'old settlers'. For each of the June and October surveys, 40 households were randomly selected from across these 777 households by allocation and generation of random numbers using the Survey Toolbox1. Focus group discussions and key informant interviews. Focus group discussions [FGD] employing participatory rural appraisal techniques [12] were undertaken by the first author with 8 groups of 6-12 individuals of the same sex, with the assistance of a local translator. These discussions were supplemented by two key informant interviews. Topics of discussion and individuals/groups targeted are summarised in Table 1. Wealth and poverty were assessed using participatory wealth ranking, in which focus group discussants self-determined wealth reference points [13]. Questionnaires. A questionnaire was administered to each selected household. Interviews were undertaken by the first author with the assistance of a local translator. Respondents were household heads or, in a minority of cases, their sons or brothers. Not all selected households agreed to be interviewed. For the survey undertaken in June 2011 a single 'outlier' household was removed from analysis, having a household size of 277 and cattle herd of 1,500. Questionnaires focussed on four themes: household size and composition; the domestic animal population (species composition and holdings kept in and outside the KGR); household livelihoods strategies and sources of income. Livestock capital was used as the primary proxy for wealth. FGDs indicated that the number of animals was the most important parameter for ranking a household's wealth status in the KGR as previously reported [14,15]. To aggregate the livestock species maintained by a household, the total number of tropical livestock units (TLU, equivalent to 250 kg live-weight) were calculated. The following conversion factors were applied: cattle = 0.70, sheep and goats = 0.10, domestic fowl/poultry = 0.01 [16]. Other wealth indicators including number of buildings, hectares farmed, and educational level of the household head, were also examined. Our analyses are based on a total sample size of 133 households. Fifty-six households were interviewed in March 2011; 38 in June 2011 and 39 in October 2011. For the surveys undertaken in June and October 2011, approximately 30% of households were of new immigrants. Data pre-dating the immigration event have been analysed separately and these excluded households and livestock that were on dry season transhumance. For most analyses, responses from June and October 2011 are aggregated. Statistical analyses. A range of univariate analyses (t-tests, chi-square tests and simple linear regression) were carried out in R v3.1.1 [17]. A multi-variable general linear regression model to explore the key variables affecting the total livestock units within a household was created in R (regression modelling strategies 'rms' package) using a stepwise, forward-selection approach with Akaike information criterion (AIC) values. Multiple correspondence analysis (MCA) was performed using selected variables from the June and October 2011 survey data. The variables used were: household size, herd size, number of marriages of household head and sources of extra income (from the options: wages (casual labour), salary (salaried work) and some sort of business initiative-e.g. tea shop, motorcycle servicing, etc.). Wealth status (using TLU per capita as a proxy) and geographical location were included as supplementary variables, which does not affect the creation of the main dimensions but enables these variables to be projected onto the MCA plot. The MCA was performed in STATA v.13 (Statacorp LP, College Station, TX, USA). --- Ethics statement Ethical clearance for interviewing of human subjects was granted on 7th February 2011 by the Ministry of Health, Kaduna State (Nota MOH/HS/PER/VOL.I/234/70). Study participants were briefed on the purpose of the study and verbal informed consent was obtained. Written consent could not be obtained as the large majority of study participants were illiterate. Participant consent was documented directly in the questionnaires used to interview the study participants. The ethics committee of the Ministry of Health, Kaduna State, approved this consent procedure. --- Results --- Household characteristics Household head. The nucleus of all KGR Fulani households is its head (HHH) or jewuro, an adult male, who makes decisions on social, economic and political matters. FGD responses indicated that the main role of the HHH was to manage the herd or agricultural unit, being responsible for all aspects of herd security, maintenance and reproductive efficiency. HHH ages ranged from 23 to 87 years with a mean and median age across the surveys of 53 years. Over 50% of HHHs were aged between 45 and 64. There was a significant relationship between household size and age of the HHH (p< 0.01), though linear regression indicated that this relationship accounted for only 8% of the variation in household size. Rates of formal education (primary, secondary or further), other than in Koranic schooling were low, at just over 10% of all HHHs. Wives and marriages. A Fulani man may take a maximum of four wives at any one time in accordance with Islamic rules. It is important to consider not just the current number of wives of HHHs, but also the number of marriages contracted. Following divorce or death of a spouse, children usually remain in their father's household. The majority of HHHs, 70%, had either one or two wives. Two was the modal number, when all of a HHH's marriages were considered, with 32% in the March survey and 44% in the June-October surveys having married twice. Three HHHs had married five times and one HHH interviewed had married 10 times, but was exceptional (Table 2). Household composition. The household, or wuro, is a group of agnatically related men, their wives and children. The FGDs with women revealed two wuro structures in the KGR: a three-generation household in which the HHH is elderly and his sons and their wives and children live under his directive and one in which the HHH has died and is replaced by his eldest son, who lives in the same household with his junior brothers, their wives and their children. The first wuro structure was more common: only 11% of households interviewed reported having a HHH living with his brothers and his brother's wives and children. 1 Number of times HHH married, inclusive of current, divorced and deceased wives 2 A HHH had one and another had 2 wives, but these wives died leaving both HHH with no wives 3 HHH divorced 5 wives 4 2 HHH had 5 wives overall and 1 HHH had 10 wives (same HHH as the one who divorced 5 wives) 5 HHH had 5 wives, 4 present and 1 that died doi:10.1371/journal.pone.0172866.t002 Respondents reported four phases of household expansion and division. (i) The household expands through the offspring of the HHH and his first wife, and may continue to expand to form a compound family if the HHH takes on more wives. (ii) The household expands when the sons of the HHH take their own wives and have children. (iii) Division occurs as sons and their wives separate from their father's household if the sons have built up large enough cattle herds, as illustrated by this statement from a young focus group discussant who decided to 'go it alone' and create a new wuro distinct from the one of his father on account of his large herd size and financial independence. A son from a poor household may also be driven to leave his father's wuro to improve his prospects by moving elsewhere: 'if someone does not have enough cows to give to all his sons then he will send his son to go and work for another herd so that he can work to earn a calf, the going rate is two years for a female and one year for a male'. (iv) Household dissolution occurs when the HHH dies and his herd is distributed amongst his sons and daughters in a 2:1 ratio. At this stage, each son may form his own household unit, although a household may continue to exist as a single unit even after the death of an elderly HHH. Certain factors such as death of a father, livestock wealth or poverty make household division more likely, but focus group discussions revealed that there is no typical threshold number of cattle or prescribed rule for an individual deciding to form his own household unit. The decision to divide is made by the household head, as illustrated by this statement from a focus group discussant: 'a son will only separate his animals and family if his father gives his approval'. FGDs in March 2011 showed that marriage occurs in individuals of 16 years or more. For the surveys undertaken in June/October 2011, 16 was considered the age of adulthood, accordingly 53% of the population were children (Table 3). Overall 51% of the household population was male; within the 5-15-year old age group, 60% were male. Marriage of young girls may have resulted in their being classified as older than they were. In the March 2011 survey, 16% of households reported hiring non-blood related 'cattle boys', classified as members of the households, accounting for 1.4% of the population. FGDs indicated these could be from non-Fulani ethnic groups. The mean household size was found to be higher (25.9) in June-October 2011 than in March 2011 (20.4). New immigrant households were significantly larger with a mean 3). Livelihood strategies. KGR is considered by government officials to be an 'agro-pastoralist' community, with the implication that 25-50% of income is derived from livestock and livestock-related activities [18]. At the time KGR was set up, it was stipulated that on settlement in KGR households should be allocated 10 hectares of land, with a proviso that 4 hectares should be dedicated to crop farming. FGD interviews showed a mismatch between the perceptions of the authorities and inhabitants. All households engaged in livestock keeping, with 97% ranking this activity as their primary source of income or subsistence. Households reported deriving more than 50% of their income from livestock which would categorise them as pastoralists. Households also engage in other livelihood strategies (cropping, mainly for subsistence, and off-farm activities). Ninety percent of KGR households grow crops, and 96% of the crop-growers ranked this activity second in terms of contribution to overall household income. Over half of KGR households engaged in off-farm activities, and ranked this activity third in terms of its contribution to the household economy. Remittances from family members living away from home and women's crafts also contributed to the income economy of some households, although these sources were typically ranked 3 or lower (Table 4). Livestock, milk and, to a lesser extent, crop sales meet the cash needs of the household. These include purchase of herbs, spices and condiments for cooking, clothes, school fees, human and veterinary drugs. Small ruminant sales cover most day-to-day cash needs whilst the sale of cattle is limited to major cash needs. There was no significant difference in household engagement in non-livestock related activities between new immigrant and old settler households (Table 5). Livestock keeping. Livestock species kept in KGR include cattle, sheep, goats and domestic fowl (chickens, turkeys and guinea fowl). Three households kept ducks and one kept pigeons). KGR households also keep small ruminants, dogs and cats: dogs for herding cattle and cats for population control of rodents that can devastate grain reserves. Cattle accounted for 96% of the overall TLUs. The contribution of each species to the overall livestock capital in terms of TLUs is shown in Table 6. The survey undertaken in March 2011 indicated many sub-herds being maintained by KGR households outside of KGR. Interviews conducted in June and October 2011 differentiated between livestock kept in the reserve and outside. Approximately 40% of the households sampled in June and October 2011, maintained cattle outside of the reserve. Despite these herds being smaller than those kept within the reserve (mean herd size outside 74 as opposed to 96 inside KGR), these sub-herds accounted for 23% overall TLUs. Some households kept goats, chickens, dogs and cats outside of the reserve, this suggests homesteads were maintained outside of the reserve as these species are not transhumant. Indeed 21% of interviewed households reported owning/hiring homesteads outside of the KGR, of whom half were old settlers. Some of the new immigrants reported that their old homesteads 'had burnt to ashes' in the post-election violence. These ''secondary" homesteads were mostly within Kaduna State (Kwoi, Birnin Gwari, Anchau, Kafanchan, Kagoro, Zangon-Kataf, Kachia, Fadan Kamantan). Some interviewees reported owning property in Bauchi, Plateau and Nassawara States. Household size was larger for new immigrants, who had correspondingly larger average TLU (Table 7). In June 2011, new immigrants and old settlers had 3.2 and 2.0 TLU per capita respectively; by October 2011, both groups had just over 2.5 TLU per capita. 1 Cattle kept within and outside KGR 2 5 HHs(households) kept sheep out of KGR, of which one had no sheep in KGR 3 1 HH kept goats out of KGR (this HH had no goats in KGR) 4 1 HH kept chickens both in and out of KGR 5 2 HHs kept guinea fowl both in and out of KGR Livestock contribute to household income and subsistence primarily through sale of cattle and small ruminants to generate cash and through the consumption of milk. Discussants reported rarely eating meat: "we do not have a taste for meat outside of slaughtering practiced as part of Islamic religious festivals (Eid el Kabir and Eid el Fitr), and even then we would rather sacrifice a sheep". The economic and sociocultural value of cattle in pastoral communities ranges from prestige-making, bartering potential or currency, sources of food and labour and asset saving or insurance against disasters. In KGR, milk from cattle is sold and or consumed. The small ruminants kept are not milk producing breeds. Among the 82% of KGR households that sell milk, half of the milk that is produced is sold, mostly within the KGR community. Some women will trek to non-Fulani villages and towns outside of KGR to sell milk and milk products. KGR inhabitants are cattle-keeping Fulani and so internal demand for purchase of milk is low. Most households take milk to the KGR central market area to sell directly to teashops. Women make nono (yogurt) and occasionally wara (cheese), sold on market days to supplement cash needs for cooking ingredients or school supplies and clothing for children. The lack of a milk market chain was described as a constraint by the community. Respondents recalled a company called 'Milkopal' which used to operate within the reserve, collecting milk directly from households and distributing to communities outside. Crop farming. Most households interviewed grew crops mostly for household consumption (Table 4). Crop farming detail was investigated during March 2011 and data refer to the old settlers in the reserve. The modal area of land farmed was 2 hectares, although some households reported farming up to 50 hectares. Half of crop farming households (51%) sold some of the crops produced and on average reported selling 40% of their produce. Less than 20% of households reported growing crops to feed livestock. Respondents ranked the importance of each crop grown in terms of subsistence and/or cash value. Almost all households engaged in crop farming grew maize and sorghum, which ranked as the two most important crops. Around 70% of households grew sweet potatoes and yams, while 40-55% of households grew cocoyam, soybean, beans, rice, cassava and groundnuts. Fewer than 30% of households grew millet. A few households cultivated ginger as a cash crop. The number of hectares farmed was not correlated with the year a household moved into the reserve (Pearson coefficient = 0.028). There was a moderate positive correlation between the number of hectares farmed and household size (Pearson's correlation coefficient = 0.396, p = 0.003) and between the number of hectares farmed and TLU per household (Pearson's coefficient = 0.431, p = 0.001). Households with the most livestock assets were found to farm the most crops. The number of livestock owned and household size are intrinsically linked, as the ability to look after large livestock herds also depends on the availability of manpower. There was a weak positive correlation between TLU/capita and hectares farmed (Pearson's coefficient = 0.150, p = 0.275). Off-farm income sources. Over half of KGR households have diversified their livelihoods through off-farm activities (Table 4), most citing 'business activities' as a source of additional income. Business activities included owning shops in Tampol, the trading centre of KGR (drug shops, teashops, a phone charging shop, a motorcycle repair shop, a general provision shop, maize grinding service and a tailor shop). Respondents also reported engagement in cattle trading or operating motorcycle taxi services. One respondent was a registered contractor of an agro-services company. One respondent had a house building and another a carpentry business. Salaried employment was also reported (Table 4). Employment included: teacher, bus driver, paramedic/ health worker, computer technician, policeman/other civil service roles. Fewer households cited engagement in casual waged labour but where this was reported it consisted of building and agriculture-related activities such as weeding, ridging, planting, sowing and ploughing. Mutual assistance. Approximately one third of households received money from family members who did not live within their homestead (Table 4). Gendered wealth holdings. Women can inherit cattle from their father. Upon the death of a household head, his cattle are distributed in a 2:1 ratio between his sons and daughters. A focus group discussant gave an example: 'if a HHH has 25 cows, 1 daughter and 2 sons, the daughter receives 5 and each son 10 cattle.' Women, however, do not hold on to this cattle wealth and will usually give these animals to her sons and husband. Transmission of cattle wealth to the next generation is also gender biased because a father will give one female calf to a newborn son but not a daughter. All subsequent calves and herd growth will usually come from this one animal, although relatives can sometimes give young boys a calf. A 28-year old discussant reported that the pregnant cow he received from his father on his second birthday enabled him to build up a herd 10 cows, 10 bulls and 5 calves. Focus group discussions revealed sheep are also owned and managed by men but that most goats and domestic fowl are reared and owned by women: 'if a woman has cash needs she can sell a goat or a chicken'. Women are also responsible for preparing and selling milk and milk products such as nono (yogurt), fura de nono (yogurt with millet), nebam (butter) wara (cheese), nyamri (porridge) and kindirmo (buttermilk). Focus group discussions with women revealed that half of milk goes to household consumption and the other half is sold. The cash generated from milk sales is managed by the household head. The only source of independent income for women is derived from women's crafts. Table 4 also shows that across 23% of households, women engaged in a range of activities including metalwork (flat pans), mats, soap, food products (bean cakes for sale on market days), sewing and dressmaking. A female FGD participant elaborated: "this enables us (women) to get some allowance for ourselves to spend on our homes and our children". --- Measures of household wealth status Association between KGR TLU and other household variables. The associations between KGR TLU and key household variables, were explored using linear regression models for all 133 households in the study (N = 133). An initial linear model was created with household size as primary predictor of household TLU. Household size was highly predictive for household TLU but accounted for only 28% of the variation seen across the households sampled. A series of additional variables were explored applying a stepwise, forward-selection approach using the adjusted R 2 and AIC values shown in Table 8. This analysis indicated, that in addition to household size, the total number of marriages ('wives') of the HHH was a significant predictor of household TLU. On average for each extra member of a household the value of its total TLU increased by 2.0 while for each additional marriage TLU increased by 15.7 (Table 9). Block membership, a variable linked to geographical location, showed marginal significance, but did not demonstrate a better fit (with a delta AIC 0.8 in the model based 121 households with complete data). A scatterplot of TLU values per household across the blocks (Fig 2) indicated differences across blocks and significant heterogeneity between households within the same block. Block 2B has the lowest median household TLU and is also the most homogeneous. Additional variables such as date of survey, old settlers versus new immigrants, years established in KGR, and number of buildings per household did not improve model fit. The introduction of various 'off-farm' activities: household engagement in business, salaried work and casual labour or receipt of money from family members living outside KGR also did not improve the model fit. Categorisation of KGR households in terms of per capita livestock holdings. The association between wealth in terms of household TLU for livestock kept in the KGR and other key variables indicated that household size was an important variable. TLU per capita were calculated and households were allocated into wealth categories based on TLU per capita as in [19] (Table 10), an approach to the estimation of wealth status that has also been widely adopted by other authors for categorising pastoralist and agropastoralists households [20,21]. There was a strong relationship between per capita and overall household TLU with a linear relationship explaining around 40% of the variance (Fig 3). Introducing a quadratic term (also highly significant) improved relationship fit, increasing the total amount of variance explained by ~10%. Households with a large livestock holding tended to have large livestock holdings per person. The nature of this relationship is however, more complex than that proposed by [20] who posited a maximum 'plateau' at 5 TLUs per capita. Here, many households exhibited a TLU per capita higher than this value (Fig 3) and 50% of the variation in this value could not be explained in terms of overall household TLU. A significant proportion (30%) of households in KGR change TLU-based wealth category when cattle outside of KGR are taken into consideration (Table 10). A general linear model yielded better predictions when 'all TLU' was considered as the outcome. Accordingly, for the MCA only data from 77 households interviewed in June and October 2011 were included in the analysis since the distinction between reported total and KGR cattle holdings was very clearly made in these interviews. Only two households fell in the lowest and highest wealth categories, these were put into the next nearest categories to generate a 4-way categorisation of wealth. Association between livestock holdings and other household variables. The MCA examined the association between household wealth status in terms of livestock holdings and a range of household variables (Fig 4). Specific components associated with the creation of weights on the first two dimensions are summarised in Table 11, including household size, total TLU at household level, number of marriages and off-farm income sources. While wealth status (based on TLU per capita) is shown on Fig 4, this is a possible consequence of the fact that it was entered as a 'supplementary' variable-i.e. one that plays no part in the underlying analysis. The first two dimensions of the MCA plot, accounting for around 76% of the variability due to the variables included, are shown in Fig 4. Variables used in the construction of plot are detailed in Table 11. Wealth Category was included as a supplementary variable. The first dimension is highly dependent on the largest and smallest household size categories (HH++ and HH-) as well as these two extreme categories for Herd Size (Herd-and particularly Herd++). The differences between the categories of 'One' and 'Many' wives also contribute to this first dimension. Sources of additional income make almost no contribution. The second dimension is strongly influenced by the smaller household size category (HH-) and moderately sized herds (Herd+ and Herd-). The difference between the groups having one or two wives, again has an influence, while those having no extra sources of income, separate from those with some, or many sources of extra income. The 'wealth' category classes are well separated particularly on the second dimension. A cluster is observed in the top-left quadrant consisting of households which are the largest in size, have the most cattle and, also have many wives ('Cluster 1'). Conversely, in the topright quadrant we find households associated with very small household size, with only one wife and smaller herds ('Cluster 2'). Finally, households with smaller overall household size but with fairly large herds and two wives are clustered towards the bottom of the graph ('Cluster 3'). The moderately wealthy category is strongly aligned with Cluster 3, while the wealthiest class sits between all the clusters. The least wealthy households tend to align with Cluster 2. Households with smaller herd sizes and relatively large households were those most engaged in looking to sources of extra income. Geographical location was included as a supplementary variable. Block 2B aligned closely with Cluster 2, while Blocks 4, 5 and 6 tended to align with Cluster 3 and Block 1 showed some alignment to Cluster 1. The other blocks showed no clear orientation and in general the inertia accounted for by block location was limited, indicating a fair degree of spatial heterogeneity in terms of these categories as represented within the MCA. --- Discussion Fulani domestic units were traditionally comprised of agnatic lineages: primary kinship groups of 500-1,000 persons [22], whose common ancestor could be traced back to more than seven generations [23]. Interviews with the Fulani community in KGR show little has changed. Household members are entirely dependent on the head of household for economic, physical and moral support and for political representation in line with previous descriptions of Fulani households [23,24]. Members of the households acknowledged that the head is responsible for management of the herding and agricultural output, for the cattle herd's safety, maintenance and reproductive efficiency. Within the reserve, 50% of HHHs were aged between 45 and 64 years, showing no increase from observations made almost 40 years ago [23], although older than recorded in the 1950s [25,26]. Household demography was also little changed with 53% consisting of children, as compared to 48% reported the 1980s [23]. The average reported household size in KGR was larger than previously cited. A mean of 12 individuals was previously cited for semi-nomadic households on the Jos plateau [23] and average household size of 6 elsewhere in Nigeria [27]. In Senegalese pastoralist communities, an average household size of 11 was observed [28]. In this study, the KGR community defined a wuro (household) as the extended household, made up of multiple 'ruga' (homesteads), consisting of a collection of huts belonging to members of the same family. This is the unit representing a cattle-owning entity headed by the HHH even though individual cattle may in fact, belong to different family members. Differences may be attributed to interpretation of a wuro, as previous studies may have defined households as individual ruga. In pastoralist communities, the livestock holding (particularly cattle) is considered to be the node that ties different aspects of wealth and poverty [11]. Increasing wealth is more likely to be associated with accumulating livestock than increasing cropping [29] but there is a tendency to generalise pastoralists as poor, pursuing an out-dated livelihood strategy which generates impoverishment [30]. The acquisition of stock and ensuring its wellbeing has been described as a means in itself, rather than a means to an end [31]. Although livestock, especially cattle are seen as a source of prestige, this is tightly bound up with their economic function. They are the means of production, the source of both future livestock and of daily income from milk for consumption or sale and occasional income from sale or slaughter of stock. Several authors discuss the importance of large herds for security in times of drought: 'a man who loses one-third of his stock is much better-off if he begins with 60 cows rather than with 6.' [32], a point underlined by the demographic modelling of the time taken recover from a drought event undertaken by [33]. Lastly, when a hardship strikes that is beyond remedying by the sale of smallstock, strikes, the so-called 'unproductive' or 'surplus' animals are the ones that can be sold. These different functions are reflected in cattle management practices, as observed in the KGR [34]. An increasing body of evidence describes diversification in income sources of pastoral peoples [2,35,36,37,38]. A decrease in household livestock holdings or increase in demand for household inputs is considered to favour a transition from pastoralism to agro-pastoralism, with diversification of livelihood being regarded as a risk avoidance strategy, promoting resilience to the environmental and social conditions pushing pastoral communities into poverty. A study in Kenya reported that the poorest categories of pastoralist households (those with less than 1.0 TLU per capita) had the most diversified sources of income whereas those with more than 4.5 TLU per capita focussed heavily on pastoralist activities and avoided diversification [30]. Government policy in Nigeria continues to place an emphasis on reducing Fulani mobility and promoting sedentarisation. As discussed above, although the KGR is officially regarded as agro-pastoralist, this study clearly indicates that it is predominantly a pastoralist community. In this study, only 10% of the KGR Fulani households still relied on livestock as their sole source of income, significantly lower than the 30% observed in a recent study of Fulani households on the nearby Jos Plateau [2]. This study shows a clear association between household TLU, household size and the number of wives of the HHH. The association between family and herd size, and between prestige, polygyny and large families has been previously reported [39]. Households with more people raise more cattle, and larger cattle holdings can support more people through production of milk and cash generated by sales. While it is perceived that a cow-human equilibrium exists, at which the size of the household and herd functions as a viable unit [33], consideration of TLU/ capita shows that KGR pastoralists are heterogeneous. MCA analysis revealed three main household clusters: wealthy, with large numbers of people, many wives and big herds; poor, with small household size, smaller herds and only one wife and moderately wealthy, small households, moderately sized herds and two wives. Polygamy was regarded in male and female focus group discussants as a social marker for wealth, but marriage was described by the men as being 'costly', each bride coming with a 'bride price' (usually the transfer of animals from the groom's to the bride's family). Taking total TLU/capita as a proxy of wealth, 38% the households interviewed in KGR in June and October 2011 would be considered destitute, very poor or poor and a further 67% showed signs of moving into poverty. KGR households are diversifying their income sources, involving other livelihood strategies and deriving income from off-farm activities including: business activities, salaried work and casual labour. For households engaged in crop farming, the number of hectares farmed is dependent on household size, as most households rely on family labour for ploughing, seeding, weeding and harvesting. Crops are grown for subsistence so that farming brings in little additional cash to the household. The extent and pattern of diversification into crop farming and off-farm sources of income varied. Households at both ends of the wealth scale were more likely to engage in off-farm income generating activities and crop farming, than those in the middle. Households with smaller herd sizes and relatively large households were those most engaged in salaried work, casual labour and business activities. Thus, households with fewer livestock had often been largely divested of their pastoral livelihood. The push out of a nomadic pastoralism and pull towards sedentarisation and diversification was eloquently described by an elderly Ardo: "there is no future in sending animals into the wilderness. The future for nomadic pastoralism is bleak. If we do not learn how to grow crops for our own consumption and forage, the big farmers with big farms will remain only and nomads will be boxed out of their livelihoods". It is becoming increasingly difficult for Fulani men to practice transhumance in Nigeria. Younger Fulani were less sentimental towards nomadic life and more pragmatic concerning income generation. There is still prestige in having large cattle herds, but younger Fulani are open-minded about combining cattle herding with other sources of income, as one young man explained: "us youngsters are less motivated to have a very large herd, we are happy to get by growing crops for our families". The pattern of wealth, and income distribution, among African societies dependent on animal husbandry, is one of inequality [40]. Insufficient attention has been paid to the disparities in livestock ownership and wealth differentiation [13,41,42,43]. Economic inequality among pastoralists, arises from historical internal dynamics and unequal access [44]. It is important to distinguish between the distribution of livestock and wealth between households and the mechanisms which prevent permanent inequalities, such as transfer of assets and limitations on herd size imposed by family labour [45]. A geographical wealth bias was observed in KGR with one particular block of wealthier, long established settlers living near the central market and a poorer group of settlers living further away, with unfavourable access to transhumance routes and grazing reserve amenities. At inception, the reserve was divided into 6 blocks, sprayed with insecticide and declared tsetse-free to encourage pastoralists to settle. While the division of KGR into blocks is administrative, the KGR community regard the blocks as separate and distinct entities, referring to themselves as 'inhabitants of Block 1' or 'inhabitants of Block 2'. Early settlers established holdings in Blocks 1 and 2A, perceived to have the best land, the best access to transhumance routes and be best served in terms of infrastructure. Inhabitants settled according to clans and new families will settle close to relatives of the same clan. In this study, Blocks 1 and 2A contained many prosperous households and were inhabited by a large proportion of 'first settlers', referred to as the 'community elite'. They are regarded as the wealthiest members of the KGR, with large cattle herds and many wives; considered to have supremacy over the rest of the KGR community, and exercise power by living in the most advantageous location. Most community leaders, including the District Head, the chief or representative of KGR district, live in these blocks, as described by one respondent: "our fellow herdsmen who have been here the longest were from wealthy clans and were able to maintain or to build up their herds better than those that came after". These blocks now enjoy a prime location next to the main access road for KGR, proximity to the market, schools and other amenities (including health care), water access (boreholes and dams) and relatively large stretches of cleared woodland for crop farming. Block 2A is considered urban in character and the heart of the KGR community. In contrast, households in Block 2B are located along a poor road leading to the Kaduna River. Households in Block 2B are regarded as the poorest members of the KGR community typically having small cattle herds. These community members live in the most inaccessible, inhospitable and remote part of the reserve, in part due to members being of a 'poor' clan and by virtue of their poverty. This area is furthest away from the transhumance corridor, making it difficult to take cattle out of the reserve for grazing. Proximity to the river presents a higher risk of trypanosomiasis in cattle, confirmed by a recent epidemiological survey [46]. Keeping herds close to watering points or hydrological networks has previously been identified as a risk factor for trypanosomiasis in KGR [47]. The opinions and attitudes of individuals in the community reflected these differences: "if we go round the Fulani settlements in the KGR we will observe that not every Fulani household is endowed with a large cattle herd, as wealth of animals is something God gives to whom he will". Heterogeneity was observed between old settler and new immigrant households. Household and herd size for the new immigrants who sought sanctuary in KGR during the political clashes in May 2011, were significantly larger than observed for the old settlers. Almost all herds of over 300 cattle belonged to new immigrants. One such household owned 1,500 cattle, 80 sheep, 2,000 chickens and comprised 277 people (a TLU/capita of 3.89 placing it in a medium wealth category). The HHH had been married 5 times. The reason for new immigrants having larger herds and households was explained by KGR inhabitants as being a result of better grazing conditions in the areas in which these households had been living previously: "when the new immigrants fled from the violence they had to bring all their animals with them and their herds are larger than the ones we are used to here because of the abundant grasses in their places of origin as compared to the limited grazing available in KGR". In response to a lack of grazing in the reserve around 40% of households also still adhered to the traditional practice of taking their KGR-based herds on transhumance at least once a year, taking cattle north during the wet season and south during the dry season travelling between 40-80 km and 20% of households seek pasture within 20-30 km of the reserve. Some 40% of KGR households also maintained permanent sub-herds outside of the reserve [11,34]. The smaller herd sizes maintained by old settlers may be related to the level of sedentarisation. Herds that moved longer distances between seasons were much larger than herds that did not move or moved only short distances. Herd owners settled in the reserve for a shorter period had considerably larger herd sizes than those who had been in their present settlement for longer as previously reported [8]. Herd size slowly decreased over the first 10 years of settlement in the reserve, after which period herd sizes reduced sharply. By October 2011, households in the reserve reported high volumes of sales indicating that residents, in particular the new immigrants were divesting themselves of some of their animals. In the current climate of political instability, reduced opportunities for herd mobility and poor access to pasture, many KGR residents believe that a shift from a purely pastoral to an integrated cattle rearing and crop farming system is a way in which KGR households can become more resilient. The early settlers, regarded as the elite and wealthiest members of the community owe their success to their ability to embrace crop farming: 'when the early settlers decided to move here, they had to move with their dependents who did not have herds of their own, this stimulated them to go into crop farming as a way of reducing pressure on the needs of the household'. Poverty in KGR is attributed by community members to the decline of crop farming within KGR, the result of an increasing cattle population and the constraint of not having enough skilled labour: 'outside KGR where there are other settlers you have the privilege of hiring labour to work on your farm. The people in KGR are Fulani whose expertise is animals, not farming, and other tribes do not come in here'. The solution, according to the community, is not to co-habit with other communities but for the Fulani man to develop the technological know-how and skills to grow crops for his family and forage for his animals. The 'Lawol-Bote' dairy producers, a dairy cooperative in KGR, also had some very clear ideas about how the community needs to adapt to changing economic conditions. Their opinion is that fodder banking (cultivation of high yielding and drought resistant pasture crops which are then stored and fed to cattle during the dry season) is one of the ways to face the current challenges. This sentiment was shared by then current KGR Project Officer and State representative of the reserve: 'we need the enlighten pastoralists on constant movement with animals and teach them how to make fodder banks'. The president of the cooperative also reported owning bulls of Friesian breed, which are crossed with the local White Fulani females to produce a crossbreed which can produce more milk whilst remaining adapted to local conditions. Shifting to a system focused on milk production through genetic breed improvement was perceived as a potential route to dairy specialisation as a way of increasing resilience, but this needs to be implemented in parallel to organised milk collection schemes and infrastructure provision (refrigerated bulk milk tank, vehicles to transport milk to milk processing plant). The NLPD (National Livestock Development Project, Federal government) is focused on reducing the number of animals and increasing their productivity to reduce competition for limited resources and negative impacts on the ecosystem, thus it is promoting intensification and specialisation of cattle production. The federal government recognises that 'the state needs to do a lot more as the infrastructure of grazing reserves is decaying and cannot accommodate the increasing cattle population'. Governmental neglect has encouraged Fulani to establish cooperatives that campaign and seek funds to promote Fulani interests. One such cooperative in the KGR is a woman's milk cooperative called the 'rise of dawn', formed to improve milk marketing opportunities within the KGR. During a FGD, its female members mentioned that a company called 'Milkopal' from Kaduna used to collect and purchase the milk produced by the community. Unfortunately this scheme collapsed and after years of waiting for the state to replace it, the women took their fate in their own hands and secured funds as part of the Kaduna Agricultural Development Project. This project has built a refrigerated bulk milk tank in Tampol, to improve opportunities for milk marketing. In the absence of a complementary milk collection scheme to take the milk outside of the KGR to areas where demand is high, the impact of this scheme is uncertain. --- Conclusion While cattle remain the principal source of Fulani income and wealth in KGR, inhabitants of the reserve have diversified their livelihood strategies in response to their changing circumstances. There was a clear association between cattle holdings, number of marriages, household size, and overall wealth, with no tapering of livestock holdings per person to a threshold. A geographical wealth bias was also observed, with wealthier, long established settlers living near the central market and a poorer group of settlers living further away, with unfavourable access to transhumance routes and grazing reserve amenities. The limited availability of grazing within the reserve and continuing political insecurity outside of the reserve are stressing pastoralist communities, resulting in the maintenance of smaller livestock holdings, pushing households into poverty and increasing diversification. Proposed strategies for further adaptation to changing economic conditions have included fodder bank schemes and shifting to a more dairy based economy (increased milk production capacity through genetic improvement of cattle) and these have been explored to some extent in the KGR. The future of the KGR's established residents and its new immigrants will ultimately depend on their resilience and ability to adapt as already evidenced by their existing adoption of a mix of livelihood and cattle management strategies. --- All relevant data are within the paper and its Supporting Information file. All data are contained within Ducrotoy MJ. Livelihoods of Fulani pastoralists and burden of bacterial zoonoses in the Kachia grazing reserve, https://www.era.lib.ed.ac.uk/ handle/1842/15912. --- Supporting information S1

cb0deae1862986507ae4c63c4139305d3ddd2012

Cardiorespiratory fitness and lifestyle on severe COVID-19 risk in 279,455 adults: a case control study

Background: The impact of cardiorespiratory fitness (CRF) and other lifestyle-related factors on severe COVID-19 risk is understudied. The present study aims to investigate lifestyle-related and socioeconomic factors as possible predictors of COVID-19, with special focus on CRF, and to further study whether these factors may attenuate obesity-and hypertension-related risks, as well as mediate associations between socioeconomic factors and severe COVID-19 risk. Methods: Out of initially 407,131 participants who participated in nationwide occupational health service screening between 1992 and 2020, n = 857 cases (70% men, mean age 49.9 years) of severe COVID-19 were identified. CRF was estimated using a sub-maximum cycle test, and other lifestyle variables were self-reported. Analyses were performed including both unmatched, n = 278,598, and sex-and age-matched, n = 3426, controls. Severe COVID-19 included hospitalization, intensive care or death due to COVID-19. Results: Patients with more severe COVID-19 had significantly lower CRF, higher BMI, a greater presence of comorbidities and were more often daily smokers. In matched analyses, there was a graded decrease in odds for severe COVID-19 with each ml in CRF (OR = 0.98, 95% CI 0.970 to 0.998), and a two-fold increase in odds between the lowest and highest (< 32 vs. ≥ 46 ml•min -1 •kg -1 ) CRF group. Higher BMI (per unit increase, OR = 1.09, 1.06 to 1.12), larger waist circumference (per cm, OR = 1.04, 1.02 to 1.06), daily smoking (OR = 0.60, 0.41 to 0.89) and high overall stress (OR = 1.36, 1.001 to 1.84) also remained significantly associated with severe COVID-19 risk. Obesity-and blood pressure-related risks were attenuated by adjustment for CRF and lifestyle variables. Mediation through CRF, BMI and smoking accounted for 9% to 54% of the associations between low education, low income and blue collar/low skilled occupations and severe COVID-19 risk. The results were consistent using either matched or unmatched controls. Conclusions: Both lifestyle-related and socioeconomic factors were associated with risk of severe COVID-19. However, higher CRF attenuated the risk associated with obesity and high blood pressure, and mediated the risk associated with various socioeconomic factors. This emphasises the importance of interventions to maintain or increase CRF in the general population to strengthen the resilience to severe COVID-19, especially in high-risk individuals.

Background The coronavirus disease 2019 (COVID-19) has become a public health emergency worldwide. Among approximately one million laboratory confirmed COVID-19 cases in Sweden, over 57,000 have been hospitalised and more than 14,000 COVID-19 related deaths have been confirmed (up until May 15 th , 2021). Mechanisms explaining a higher vulnerability to severe COVID-19 have been linked to inflammation characterized by increased levels of several pro-inflammatory cytokines and the inflammasome [1]. In turn, this has resulted in an inter-individual variation in severity of COVID-19 infection, so that, for example, older age, male gender and one or more comorbidities have been associated with increased risk for hospitalization and mortality due to COVID-19 [2][3][4]. Also, lifestyle-related factors have been linked to COVID-19 severity. Overall/central obesity and hypertension were the first and most frequently reported factors found to be more prevalent in individuals who were hospitalized or died due to COVID-19 [5][6][7][8]. In later papers, physical inactivity has been linked to severe COVID-19 risk [9,10] and in a small sample of men and women, lower cardiorespiratory fitness (CRF) has also been associated with a higher risk of hospitalisation for COVID-19 [11]. Only a few studies have investigated the importance of lifestyle factors on severe COVID-19 risk, and it is plausible that, based on previous knowledge, a healthy lifestyle before infection may reduce the risk of severe COVID-19. A positive impact on inflammation and the immune system is one possible mechanistic pathway [12,13], as low-grade inflammation is considered to be a strong causal factor for chronic diseases such as cardiovascular disease and cancer [14]. Also, the possible impact of a healthy lifestyle on other risk factors, such as overweight/ obesity and hypertension [6,15], may induce protection against severe COVID-19, and regular physical activity (PA) has been suggested as a protective non-pharmacological tool against COVID-19 [12,16]. However, the research underpinning these assumptions is limited, as are previous studies looking at the importance of and the interaction between different lifestyle-related factors for COVID-19 severity. Apart from the above predictors, lower socioeconomic status (assessed as, for example, educational level, income or area of residence) has been related to more severe COVID-19 [2,17,18]. The subsequent severity of the COVID-19 infection may, however, not only be explained by structural socioeconomic factors, but also by more unfavourable lifestyle habits and poorer health status before infection in individuals with lower socioeconomic status [19,20]. If and how lifestyle mediates some of the associations seen between socioeconomic factors and severe COVID- 19 has not yet been investigated. The identified knowledge gaps above are addressed in the present study, with the main aim being to study a wide span of lifestyle-related and socioeconomic factors as potential predictors of severe COVID-19, and with special focus on CRF. Secondary aims are to study whether CRF may attenuate obesity-and hypertensionrelated risk of severe COVID-19, and whether lifestyle-related factors mediate the associations between socio-economic factors and severe COVID-19 risk. The hypotheses are that lifestyle-related (in particular CRF) and socioeconomic factors can predict severe COVID-19, and that variations in lifestyle-related factors mediate a large proportion of the risk of severe COVID-19 associated with socioeconomic factors. --- Methods The study is a nested case-control study based on data from the Health Profile Assessment (HPA) database (www. hpi. se). HPAs have been carried out in health services all around Sweden since the middle of the 1970s and is offered to all employees working for a company or an organization connected to occupational or healthrelated services. An HPA includes a questionnaire about lifestyle and health experiences, measurements of anthropometrics and blood pressure, estimations of maximal oxygen consumption (VO 2 max) from a submaximal cycle ergometer test, and a person-centred dialogue with a HPA coach. In February 2021, a total of 407,131 HPAs between 1992 and 2020 were available in the database, and the database was linked to national registries with data on severe COVID-19 (defined as hospitalization, intensive care or death due to COVID-19) using the unique Swedish personal identity number. A total of 857 (0.2%) confirmed cases with severe COVID-19 were identified, including COVID-19 hospitalization (n = 547, 0.1%), intensive care (n = 172, 0.04%) and death (n = 138, 0.03%). Controls were recruited from the same HPA database. All deceased controls before 2019-12-31 according to the national cause of death registry were excluded. To minimize internal drop-out, only participants without severe COVID-19 and with valid data on sex, age, educational level, CRF, body mass index (BMI), exercise and smoking were eligible as controls (a total of n = 278,598). Eligible controls were in general more often women, older, and had higher CRF and lower BMI (see overview of included and excluded participants in Additional file 1). The study was approved by the ethics board at the Stockholm Ethics Review Board (Dnr 2020-02,727). Informed consent was obtained from the participants prior to participation in the HPA. It was not possible to involve participants or the public in the design, conduct, reporting or dissemination plans of our research, due to its retrospective design. --- Estimation of VO 2 max Measurement of CRF as actual maximal oxygen uptake (VO 2 max), using a graded test to exhaustion, is limited in the general population for numerous reasons including health risks in non-athletic populations and dependence on laboratory equipment and expertise. Therefore, CRF was assessed as estimated VO 2 max (estVO 2 max) from the standardized submaximal Åstrand cycle ergometer test in L•min -1 and also expressed in relative values (ml•min -1 •kg -1 ) [21]. Previous validation studies on adult population samples show small and non-significant mean differences on a group level (-0.07 L•min -1 95% CI -0.21 to 0.06) between estVO 2 max from the Åstrand protocol and direct measured VO 2 max during treadmill running with an absolute error and coefficient of variance similar to other submaximal tests (SEE = 0.48 L min -1 , CV = 18.1%) [22]. To minimize well-known errors with submaximal testing, participants were requested to refrain from vigorous activity the day before the test, consuming a heavy meal and smoking/using snuff three hours and one hour respectively before the test, as well as avoiding physiologic and emotional stress prior to the test. The participant cycled on a calibrated ergometer at an individually adapted submaximal work rate (aiming at a rate of perceived exertion of "Somewhat hard", 13-14, on the Borg RPE scale) for 6 min to achieve a steady-state pulse assessed during the last minute of cycling. Using the steady-state pulse and the work rate, VO 2 max was estimated from a sex-specific nomogram, with corresponding age-correction factors [21]. --- Other measurements Body mass was assessed in light-weight clothing using a calibrated scale and to the nearest 0.5 kg. Body height was assessed to the nearest 0.5 cm using a wall-mounted stadiometer. Body mass index (BMI) (kg•m -2 ) was subsequently calculated. Central obesity was assessed as waist circumference and measured to the nearest 0.5 cm with a tape measure at the midpoint between the top of the iliac crest and the lower margin of the last palpable rib in the mid axillary line after normal exhalation. Systolic and diastolic blood pressure (BP) were measured manually by the standard auscultation method in the seated position after 20 min of resting. --- Self-reported and register data Exercise, commute type, physical work situation, diet habits, alcohol habits, smoking, overall stress, and perceived health were self-reported (see Additional file 2). Highest educational attainment, occupation, income, civil status, and data on country of birth at the time for the HPA were obtained from Statistics Sweden by linking of the participants' personal identity numbers. Educational attainment was collected from the Swedish education nomenclature 2000 and was categorised into three categories: Elementary school, High school/Vocational education, and University. Each occupation is labelled and defined by a four-digit code according to the Swedish Standard Classification of Occupation [23]. In the present study, occupations were further aggregated according to the first digit into white-collar high-skilled (Major group 1-3), white-collar low-skilled (Major group 4-5), blue-collar high skilled (Major group 6-7) and blue-collar low-skilled (Major group 8-9). For a more detailed description see publication [24] by Väisänen et al. Total income from employment for the specific year was derived from the Income and Taxation Register. Cases of chronic disease before 2020 were ascertained through the Swedish national patient registry using ICD-coding; C00-D48 to define tumour disease, E10 to E14 for diabetes, I10 to I15 for hypertension, I26 to I28 + J44 to J45 for lung disease and I20 to I25 + I30 to I52 + I60 to I69 for cardiovascular disease. --- Severe COVID-19 surveillance The main outcome in the present study is severe COVID-19, which is defined as either hospital admission, admission to ICU and/or death due to COVID-19. Participants' personal identity numbers were linked to national registers. Data on hospitalization was obtained from the Swedish National Patient Register, data on intensive care was obtained from the Swedish Intensive Care Registry, and data on death was obtained from the National Cause of Death Register. --- Statistics Main analyses include cases with sex-and age-matched controls, as the risk of severe COVID-19 is strongly associated with male gender and higher age. Sensitivity analyses using unmatched controls are included in supplementary material (see Additional file 3). For matched analyses, each case was matched to four eligible controls out of the 278,598 eligible controls in the HPA database, with no tolerance in variation between sex or age (per year) between the case and the controls and without replacement of controls in the sampling. For unmatched analyses all eligible controls were used. To compare descriptive characteristics of cases and controls, paired t-test (continuous data), Cochran's Q test (nominal data) and Related-Samples Friedman's Two-Way Analysis of Variance by Ranks (categorical data) were used, and effect sizes as Cohen´s d is presented for continuous data. To compare descriptive characteristics between cases of severe COVID-19, chi-square test of independence with false discovery rate correction for multiple testing (categorical data) and ANCOVA (continuous data) were used. Logistic regression modelling was used to calculate odds ratio (OR) with 95% confidence intervals (95% CI) for different predictors of serve COVID-19. Three models were used and adjusted for an increasing number of variables (see under each table/figure). Model 1 included sex, age and performed year of HPA. Model 2 additionally adjusted for educational level, civil status and country of birth, and Model 3 also adjusted for CRF, BMI, number of chronic diseases, exercise habits, smoking and overall stress. Due to internal drop-out for variables included in Model 2 and 3, two Model 1's are presented; one Model 1 with OR and 95% CI including all available individuals (labelled Non-complete data in the tables, referred to as Model 1-nc), and a second Model 1 including only individuals with complete data for all adjusting variables (labelled Complete data for all adjusting variables in the tables, referred to as Model 1-c). Further, BMI, waist circumference, blood pressure, estVO 2 max and income from employment were analyzed as continuous variables as well as after aggregation; BMI was aggregated into normal weight < 25, overweight 25-29.9, obesity 30-34.9 and severe obesity ≥ 35 kg•m -2 ; large waist circumference was defined as ≥ 88 cm for women and ≥ 102 cm for men, (both BMI and waist circumference were categorized according to recommendations by the world health organization [25]); high systolic and diastolic BP were defined as ≥ 140 mmHg and ≥ 90 mmHg, respectively; estVO 2 max was arbitrarily categorised based on multiples of one METs (3.5 ml•min -1 •kg -1 ) into < 25 (very low), 25-< 32 (low), 32-< 46 (moderate) and ≥ 46 (high) ml•min -1 •kg -1 ; and total income from employment into quartiles, percentile 25 = 281,143, percentile 50 = 362,718, percentile 75 = 479,764 Swedish crowns. All above analyses were performed using IBM SPSS (V.26.0.0.1) and Jamovi (The jamovi project (2021) Version 1.6. retrieved from https:// www. jamovi. org). Marginal effects plots for severe COVID were calculated by setting the covariates at a mean (for continuous variables) or average (for factor variables) level while varying the focal variables, using R (R Core Team, 2021) and the packages Tidyverse [26] and ggeffects [27]. Mplus version 8.6 [28] was used to estimate Bayesian parallel mediation models linking socioeconomic indicators to severe COVID-19 via multiple mediators (Fig. 2). Separate models were estimated for each socioeconomic indicator. The highest socioeconomic category was used as the reference category in each model. CRF, BMI, exercise, and stress were treated as continuous variables whereas smoking was dichotomized into daily smoker or never/seldom smoking. We used the proportion of the total effect that is mediated as an effect size measure [29]. The proportion mediated by each mediator was calculated by dividing the specific indirect effect by the total effect (a 1 b 1 ) / (a 1 b 1 + a 2 b 2 + a 3 b 3 + a 4 b 4 + a 5 b 5 + c'). The total proportion mediated was calculated by dividing the sum of the indirect effects by the total effect (a 1 b 1 + a 2 b 2 + a 3 b 3 + a 4 b 4 + a 5 b 5 ) / (a 1 b 1 + a 2 b 2 + a 3 b 3 + a 4 b 4 + a 5 b 5 + c') . Models were estimated using four Markov chain Monte Carlo chains and a minimum of 50,000 iterations. The first half of the iterations were discarded as burn-in and the remaining iterations were used to estimate the posterior distribution of the parameters. A stable potential scale reduction factor (PSFR) close to 1 was considered as evidence of chain convergence alongside inspection of trace plots and autocorrelation plots. Indirect effects were evaluated using 95% highest posterior density (HPD) credibility intervals [30]. The credibility interval indicates the probability that the parameter lies between the lower and upper bound of the interval [31]. If an interval did not include zero, the indirect effect was credible. The default non-informative prior specification in Mplus was used. --- Results --- Characteristics of cases and controls In the matched analyses, 857 cases of severe COVID-19 and 3426 matched controls were included (for one case, only two exact matched controls were identified). Mean age was 49.9 years (SD 10.7) and 70.4% (n = 603 cases and n = 2 412 controls) were men. The median year that the HPA was performed was 2012 (Q1 2008, Q3 2016) for controls and 2011 (Q1 2006, Q3 2016) for cases. In the unmatched analyses, the mean age for all eligible controls was significantly lower compared to cases (43.7 years (SD 11.6), p < 0.001), and with a significantly lower proportion of men (53.8%, p < 0.001) compared to the matched analyses. The median year that the HPI was performed for all eligible controls was similar to the matched controls 2012 (Q1 2007, Q3 2016). There were several differences between cases and matched controls for established COVID-19 risk factors, such as cases having higher BMI, blood pressure and presence of comorbidities as well as greater waist circumferences (Table 1). Cases also demonstrated significantly lower estVO 2 max and more unfavourable exercise patterns. There were also several differences in terms of educational level, country of birth, dietary habits and self-rated health. Moreover, cases with more severe complications from COVID-19 (death vs intensive care or hospitalization, and intensive care vs hospitalization) had significantly lower estVO 2 max, higher BMI, greater presence of comorbidities and were more often daily smokers (see Table 2). --- Impact of lifestyle-related characteristics Four models were used to quantify independent associations between potential lifestyle-related predictors and severe COVID-19 in the matched analyses, where two Model 1's (Model 1-nc and Model 1-c) enabled comparative analyses with non-complete and complete data for all adjusting variables in Model 2 and 3, see Table 3. In terms of CRF, there was a graded increase in odds with lower compared to high levels, OR = 1.62 (95% CI, 1.00 to 2.62) for moderate CRF (32 to < 46 ml•min -1 •kg -1 ) and an approximately two-fold increased odds for low (OR = 2.02, 1.22 to 3.35) and very low fitness (OR = 1.91, 1.09 to 3.34), respectively (Table 3). Similarly, being overweight was associated with two-fold increased odds compared to normal weight (OR = 1.98, 1.53 to 2.56), and obesity and severe obesity was associated with three-fold increased odds (OR = 2.94, 2.13 to 4.07 and OR = 2.98, 1.80 to 4.94 respectively). A larger WC was associated with higher odds in the fully adjusted model, OR = 1.75, 1.20 to 2.55. Presence of chronic disease had a graded increase for every additional diagnosis, OR = 1.88 (95% CI: 1.44 to 2.45) for one chronic disease, and OR = 4.55 (1.83 to 11.33) for 4 to 5 chronic diseases. Neither high systolic nor diastolic blood pressure remained significantly associated with severe COVID-19 after multiadjustment. Reporting daily smoking (OR = 0.60, 0.41 to 0.89) as well as a high level of stress (OR = 1.36, 1.001 to 1.84) were significantly associated with severe COVID-19 in the fully adjusted model. Figure 1 presents the predicted probability of severe COVID-19 according to continuous levels of CRF, overall and central obesity (BMI and WC), and systolic and diastolic blood pressure. All obesity and blood pressure measures were attenuated by adjustment for lifestyle variables and CRF, however, these associations with severe COVID-19 remained significant. --- Impact of sociodemographic factors Low education (elementary vs. university) predicted severe COVID-19 (OR = 1.81, 1.28 to 2.54) after multiadjustment, as did being born outside Sweden vs. being born in Sweden (OR = 2.58, 1.97 to 3.38) (Table 4). No significant associations were seen for civil status, occupational groups, or income quartiles. In additional sensitivity analyses using unmatched controls (see Additional file 3, Supplement Tables 1 and2) the odds for severe COVID-19 were higher in men (Model 3, OR = 1.97, 1.62 to 2.40) and with increasing age (Model 3, per year OR = 1.02, 1.01 to 1.03). Individuals ≥ 70 years and 60 to 69 years had higher odds compared to those < 60 years. However, the odds were attenuated by additional adjustments for lifestyle-related factors (Model 2 and 3 adjustment). Further, lifestylerelated and sociodemographic predictors showed similar associations as in the matched analyses, with only marginal variations in both OR and CI, which did not alter the results or conclusions of the unmatched analyses. --- Mediation analyses The mediation analyses are summarized in in the highest socioeconomic category, lower socioeconomic status was related to an increased risk of severe COVID-19 through BMI and CRF, and a lower risk for severe COVID-19 through smoking. The findings were similar across all three socioeconomic indicators. The total proportion mediated across all five mediators ranged from 49 to 86%. Because the mediation models were inconsistent (i.e., they included both positive and negative effects on the dependent variable), we calculated the proportion mediated based on absolute values [29]. Thus, these values represent the proportion of the absolute total effect that was mediated. Mediation analyses using an unmatched sample (N = 279,455) showed similar results (see Additional file 3, Supplement Table 3). --- Discussion The main results of the present study include strong associations of several lifestyle-related risk factors, including CRF, overweight/obesity, perceived stress, and high blood pressure, with severe COVID-19, even after adjustments for sociodemographic factors and previous diseases. Among patients with severe COVID-19, those with more severe COVID-19 (death vs intensive care or hospitalization, and intensive care vs hospitalization) had lower CRF. In mutually adjusted analyses, higher CRF attenuated some of the risks related to both obesity and hypertension. Low educational level, low income as well as blue collar/low skilled occupations were associated with increased risk of severe COVID-19. However, these associations were, to a relatively large proportion, mediated by CRF, BMI and smoking. The results were consistent when using matched or unmatched controls. --- Comparison with other studies This is, to our knowledge, the first study investigating the association between a wide variation of lifestyle-related risk factors, including CRF, and severe COVID-19. The results are consistent with the few previous existing studies that have found evidence of associations between PA, overweight/obesity and smoking with severe COVID-19 [9,10]. In 387,109 middle-aged men and women from the UK Biobank, there were 760 cases of hospitalization for COVID-19 [9]. After multi-adjustment, participants reporting no regular PA had a 32% higher risk of hospitalization for COVID-19 compared to those reporting some PA (active but below guidelines) or meeting activity guidelines (≥ 150 min per week of moderate PA or 75 min per week of vigorous PA). Smoking, compared to not smoking, was associated with a 42% higher risk. Further, a lifestyle score was derived including both physical inactivity, smoking, heavy alcohol consumption, and overweight/obesity, which showed a dose-dependent increased risk of hospitalization for COVID-19 partly explained by C-reactive protein levels. Moreover, in 48,440 adult patients with a COVID-19 diagnosis, those who had been consistently inactive (0-10 min of PA per week) in the two years preceding COVID-19 infection, had a significantly higher odds of hospital admission (OR 2.26), admission to intensive care (OR 1.73) and death (OR 2.49) due to COVID-19 compared to patients reporting being inconsistently (10 to < 150 min per week) or consistently (≥ 150 min per week) moderately to vigorously physically active [10]. Although the present study did not find a significant association between PA levels and severe COVID-19, the strong and consistent association of CRF and COVID-19 may be even more important. All previous studies have relied on self-reported PA, which is a subjective measure of recent PA levels containing wellknown errors (recall-bias) that permit valid analyses on mainly aggregated PA levels [32]. In the present analyses, CRF was included as a more objective measure of recent PA as well as an indicator of the status of the cardiorespiratory system. This showed a lower risk of severe COVID-19 per ml•min -1 •kg -1 with a doubling of risk between the two lowest and the highest categories (< 32 ml•min -1 •kg -1 and ≥ 46 ml•min -1 •kg -1 respectively). This is similar to a previous report on all-cause mortality and CVD morbidity risk, where decreases of 2.3% and 2.6% per ml increase in estVO 2 max were seen [33]. Only one previous study has studied the association between recent CRF and COVID-19. In a small sample of patients (n = 246) with positive tests for COVID-19, men (but not women) with lower CRF were more likely to be hospitalized than those with higher CRF [11]. A study using data from military conscript (≈18 years of age) between 1968 and 2005 showed that high CRF at conscript was associated with lower odds of severe COVID-19 later in life [34]. In the fully adjusted analyses, both perceived stress and smoking remained significantly associated with severe COVID-19. Reporting high overall stress was associated with significantly higher OR (1.36) compared to low stress. This is partly supported by findings from the UK Biobank participants [17] where a 58% increased risk of hospitalization due to COVID-19 was found among individuals reporting high psychological distress. In contrast to the present results, the association did not remain after full adjustment with comorbidities, other lifestyle variables and socioeconomics. More surprisingly in the present study, smokers had a significantly lower OR (0.60) compared to non-smokers, which adds to equivocal results in the current literature [4,9]. A hypothesis has been raised that nicotine may have beneficial effects on COVID-19 due to its interaction with the renin-angiotensin and effects on the immunomodulatory system [35], but further investigation of the mechanisms associated with these findings remains to be elucidated by better controlled studies. Consistent with other publications [5,6], both overweight and obesity were associated with a higher risk of severe COVID-19. This could partly be explained by a higher prevalence of metabolic risk factors and lowgrade inflammation in overweight/obese individuals, as these have been identified as central mechanisms for a higher vulnerability to severe COVID-19 [36]. Interestingly, a recent paper including over 17 million individuals found similar associations between commonly accepted risk factors (age, male sex, deprivation, obesity, and some comorbidities) for non-COVID (including CVD, cancer, dementia etc.) deaths and for COVID-19 deaths, suggesting that COVID-19 largely mirrors existing risks faced by patients [37]. However in the present study, obesity-risk was at least partly attenuated by CRF. Attenuation by CRF were also seen for central obesity (waist circumference) and high systolic and diastolic blood pressure related risks. These findings are highly clinically relevant and in line with previous studies on cardiovascular disease risk and premature death, where "fat but fit" individuals had significantly better prognoses for cardiovascular outcomes and mortality compared to obese but unfit individuals [38,39]. There are several suggested mechanisms for the beneficial effects of regular PA and higher CRF levels on both COVID-19 severity per se, as well as attenuation of the obesity-and hypertension-related risks [12,13,16,40]. One is the lower prevalence of obesity and hypertension in more active individuals [6,15]. Moreover, regular exercise induces a marked increase in several anti-inflammatory cytokines, counteracting the low-grade inflammatory state present in many chronic metabolic diseases (such as obesity and type 2 diabetes) [12,13]. It also induces a natural immune-protection against more severe COVID-19 by reducing the so-called "cytokine storm" (peaking of pro-inflammatory cytokines including interleukin-6 and tumour necrosis factor-alpha) that ICU-patients with severe COVID-19 experience [41,42]. Also, regular PA has shown a direct and positive effect on lung function, and the antibody concentration after vaccination is higher among regularly physically active individuals [40]. There were differences in sociodemographic factors between cases and controls in the present study, which is consistent with previous studies. Among 431,051 British adults, low levels of education, income and area deprivation doubled the risk of hospitalization due to COVID-19, with a 39% higher risk for those with occupations including personal service and sales compared to managers [17]. Across 3135 US counties, the counties with a higher percentage of households with poor housing had a higher incidence of COVID-19, as well as mortality due to COVID-19 [18]. These findings are supported by a large Swedish study, indicating that an educational level only up to elementary school, compared to higher educational levels, was associated with a higher risk for both intensive care and non-intensive care hospitalisation due to COVID-19 [2]. Also, bluecollar workers were significantly less likely to work from home or to change commuting habits in relation to the COVID-19 pandemic, compared to white-collar workers [43]. However, as health status prior to infection seems to heavily impact the severity of COVID-19, we hypothesized that the variation in health lifestyle factors would mediate some of the risk associated with socioeconomic factors. In the mediation analyses, lower socioeconomic status (indicated by education, income, and occupation) was related to an increased risk of severe COVID-19 through higher BMI and lower CRF, whereas lower socioeconomic status was related to a lower risk of severe COVID-19 through smoking. Similar mediation analyses have been performed for cardiovascular disease [19] and cancer morbidity and mortality [20], where modifiable factors including BMI and smoking explained between 42 and 46% of the association between low socioeconomic position and the outcomes. The proportion mediated in the current study ranged from 49 to 86%, indicating that the mediators accounted for a relatively large proportion of the association between socioeconomic factors and risk of severe COVID-19. The present indirect effects on severe COVID-19 risk through BMI and CRF highlight factors that could be targeted in interventions to strengthen the resilience for future severe infections. --- Strengths and weaknesses of the study A case-control study is not as powerful as other types of studies in confirming a causal relationship [44]. However, the strengths of this study are the large cohort of different aged women and men with variations in socioeconomic gradients, and the available data on several lifestyle-related factors assessed by standardised methods. Another strength is the highly corresponding results obtained using either the sex-and age-matched controls or all eligible controls in the analyses. The mediation analyses are also a strength, as they highlight processes through which socioeconomic inequalities may influence disease risk. In Sweden, patients from both low and high socioeconomic status have similar access to healthcare, which strengthens the argument for the role of lifestyle factors, including CRF, in preventing severe COVID-19. Limitations of the study include self-reported data regarding lifestyle habits, which risks recall bias [45]. However, questionnaires with categorical answer modes as used in the present study have been reported to provide superior validity compared to open answer modes for PA level [46]. The study design explores associations over time, but does not give information about causality, in this case between lifestyle related and socioeconomic risk factors and severe COVID-19. Moreover, the clinical status of the cases and controls between the time of their HPA and the follow-up period were not monitored. There is a risk of reversed causality due to individuals with a better health status possibly having higher CRF, lower BMI and lower blood pressure. However, the size of the study population made it possible to identify the effect of low CRF, obesity and elevated blood pressure by adjusting for multiple potential confounders and thereby reducing the risk of reverse causality. --- Conclusions Higher CRF was associated with better resilience for severe COVID-19, which is of great clinical value, particularly for high-risk individuals with obesity and/or hypertension. Further, the mediation analyses included in the present paper add important initial evidence of modifiable factors mediating the associations between socioeconomic variables and severe COVID-19. This should shift the focus from structural factors, such as educational level or income per se, having direct effects on disease risk, to instead highlighting and targeting modifiable factors, including CRF and BMI, to increase resilience. This is particularly important as a decrease by 10% (4.2 ml•min -1 •kg -1 ) in CRF has been reported over the last two decades in the Swedish working population [47]. This has been confirmed in international data [48]. During the same time period, the prevalence of obesity and severe obesity has increased by 153% and 86%, respectively [49]. This calls for an urgent need to implement interventions, such as PA on prescription, to increase CRF, preferably specifically targeting high-risk individuals. Further analyses on how sex and age moderate the association between CRF and severe COVID-19 are needed, as are studies including objective measures (e.g. accelerometers) for assessment of PA patterns. Although the mediation analyses highlight processes through which socioeconomic inequalities may influence disease risk, given the correlational nature of the data, these findings need to be replicated in future studies using designs that allow for stronger causal conclusions. --- Availability of data and materials The datasets generated and/or analysed during the current study are not publicly available due to them being the property of the HPI Health Profile Institute, but are available from the corresponding author, [email protected]. Additional information regarding technical details, statistical code, and derived data are also available from the corresponding author. --- Abbreviations --- Supplementary Information The online version contains supplementary material available at https:// doi. org/ 10. 1186/ s12966-021-01198-5. Additional file 1: Supplement figure 1. Flow chart of included and excluded participants. Contains a flow chart of included and excluded cases and controls. Additional file 2. Questions from Health Profile Assessment. Contains the questions from the Health Profile Assessment for self-reported data in the study. --- Additional file 3. Supplement Tables. Contains supplement table 1 to 3. --- Authors' information Not applicable. Authors' contributions EEB, AL, VB, LVK, BE, GA, PW contributed to the conception or design of the work. EEB, AL, DV, EH, JSE, ML, AS, TH contributed to the acquisition, analysis, or interpretation of data for the work. EEB, AL, VB, LVK, BE, EH drafted the manuscript. DV, GA, PW, JSE, ML, AS, TH revised it critically for important intellectual content. All authors critically revised the manuscript, gave final approval, and agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The corresponding author, EEB, is the manuscripts guarantor and attests that all listed authors meet authorship criteria, that no others meeting the criteria have been omitted and takes the full responsibility for the overall content. --- Declarations Ethics approval and consent to participate The protocols used were approved by the institutional review boards of the institutions involved in this study and all participants provided informed consent prior to data collection. The study was approved by the Stockholm Ethics Review Board (Dnr 2020-02727), and adhered to the Declaration of Helsinki. --- Consent for publication Not applicable. --- Competing interests Author GA (responsible for research and method) and PW (CEO and responsible for research and method) are employed by HPI Health Profile Institute. The remaining authors declare that they have no competing interests. • fast, convenient online submission • thorough peer review by experienced researchers in your field • rapid publication on acceptance • support for research data, including large and complex data types • gold Open Access which fosters wider collaboration and increased citations maximum visibility for your research: over 100M website views per year --- • At BMC, research is always in progress. --- Learn more biomedcentral.com/submissions Ready to submit your research Ready to submit your research ? Choose BMC and benefit from: ? Choose BMC and benefit from: --- Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

4866132289d891e28dc26bbe299f131f36de31b0

Living experiences of people living with HIV-AIDS from the client’s perspective in nurse-client interaction in Indonesia: A qualitative study

Nurse-client interaction when providing nursing services is limited to optimizing treatment and self-care, with limited focus on the psychological problems of people living with HIV-AIDS. However, psychological problems manifest more often than the health risks of the disease itself. This study aimed to determine the emotional response of people living with HIV-AIDS who received limited attention from nurses from the perspective of nurse-client relationship.A phenomenological qualitative design was used through in-depth face-to-face interviews in a semi-structured manner, in an effort to obtain complete data. This research used purposive sampling with Participatory Interpretative Phenomenology analysis, involving 22 participants (14 males and 8 females).This research produces several themes, with six subcategories: 1) Difficulty of social access, 2) Forcing to accept their situation and suppressing their will, 3) Wanting to be recognized like other people in general, 4) Social stigma and self-stigmatization affecting surroundings, 5) Lacking enthusiasm for life expectancy, 6) Always lingering under the shadow "when death picks up."The results showed that mental stress was experienced more than physical problems by people living with HIV-AIDS, thus prompting new changes to nursing services for HIV-AIDS

Introduction The complex issues faced by people with HIV-AIDS prioritizes the provision of comprehensive nursing care [1]. In Indonesia, the number of people living with HIV-AIDS remains relatively high, with a Case Fatality Rate of 1.03% as of 2018 [2], and is often accompanied by comorbidities, ranging from infectious diseases such as pulmonary TB, accounting for 21.65% and non-communicable diseases, such as hypertension (39.17%) [3], and Kaposi's sarcoma (2.6%) [4]. This is the main cause of hospitalization in patients [3], with a prevalence of 59% of the population dominated by individuals in productive age. In addition, the cost of care provided to these patients was almost six times higher than that of the controls and four times higher after taking antiretroviral drugs [5]. HIV-AIDS, which is characterized by a progressive decline in the immune system, has a serious impact on well-being. This is evidenced by the fact that patients with other diseases, such as pulmonary TB, are still willing to be open to appearing in public [6]; however, people with HIV-AIDS are very protective in their expression [7]. This difference is driven by the general stigma attached to people with HIV-AIDS in the community, which is far more discriminatory than other diseases [8], and the belief that HIV-AIDS is a punishment from God and the sins caused by their actions can add to the burden of suffering [9]. Therefore, it is important to understand the emotional responses of people living with HIV-AIDS during therapy programs. The severity experienced by people living with HIV-AIDS does not correspond with clinical practice because nurses fail to respond adequately to their demands, thus affecting their overall well-being [10]. This discrepancy between expectations and reality experienced by these patients, as well as worsening health as a result of their illness, emerged as a very agonizing experience, as reported in this study [11]. Meanwhile, the dominance of optimizing the anticipation of loss to follow-up and strengthening self-care has eliminated problems from other psychosocial aspects, so that it can change the healthcare system, which includes bio, psycho, social, cultural, and spiritual aspects [12]. It is clear that attention to physical problems is a serious concern without considering psychosocial problems or traumatic experiences when people living with HIV-AIDS interact in the community. For a wider interest in nursing practice, provision of nursing care to people living with HIV-AIDS should focus on psychosocial problems besides the physical aspects within the framework of holistic nursing care [13]. This is because, while providing nursing care to people with HIV-AIDS, the approach taken is concentrated and centered on clinical practice [14]. Meanwhile, the "Health" paradigm toward HIV-AIDS has shifted to a view of disease as a result of human behavior, and this must be integrated into the beliefs of people living with HIV-AIDS to support their well-being, which requires knowledge and an understanding of the patient's personal experiences and the meaning of these experiences in a patient's life, as these are much more important than just clinical pharmacological monitoring [15]. There is a relationship between well-being and increased immunity [13]. Therefore, in order to improve quality of life and understand their life experiences, it is possible to develop nursing interventions that can improve their well-being [16]. People living with HIV-AIDS frequently experience stigma and discrimination, especially in the surrounding community. This triggers psychological problems, including anxiety, depression, and the risk of suicide [17]. In this approach, the focus is on the experiences of people living with HIV-AIDS, and nursing care is critical because nurses as caregivers play an essential role in every nursing action and follow-up in continuing nursing services [18]. Therefore, nurses must view people living with HIV-AIDS as a combination of bio, psycho, sociocultural, and spiritual features, without distinguishing ethnicity, nationality, race, and religion. The relationship between patients and nurses is professional [12]. It is important for nurses to develop nursing care by enhancing interpersonal relationships between them and the patients as a mutually beneficial relationship; this approach encourages people-centered holistic nursing practice [19]. In addition, in the process of caring, the depth of the patient's experience is easy to understand, and nurses obtain new possibilities and opportunities to provide nursing services according to the needs and expectations of the patient [20]. Therefore, understanding the feelings of people living with HIV-AIDS is important, and this is used for the construction of future nursing interventions to improve patients' health status and happiness. Although several qualitative studies have reported events experienced by people suffering from HIV-AIDS [21], they did not specify the relationship between nurses and clients from the client's perspective and only focused on physical and functional disorders. Therefore, this study focuses on studies on the life experiences of people living with HIV-AIDS when interacting with nurses, and the meaning of these experiences. --- Material and methods --- Participants Overall, the study involved 22 participants, and factors included age, gender, type of work, and comorbidities. Further details can be found in Table 1. --- Procedure The life experiences of people living with HIV-AIDS that are overlooked by nurses during the interaction process as meaningful experiences have been mutually agreed upon in this study. In addition, the researchers used the COREQ strategy to determine consolidation criteria in conducting qualitative searches for this study [22]. The study process followed the Consolidated Criteria for Qualitative Research Reporting checklist. Individual and in-depth face-toface interviews with people living with HIV-AIDS were conducted in a semi-structured manner to obtain complete data on life experiences when interacting with nurses [23]. In order to meet the participants, mediation was obtained from nurses who organized the HIV-AIDS Disease Prevention and Eradication program at the Health Office, and were placed in the Community Health Center to monitor and provide treatment and counseling services. The nurse assessed whether the participants (people living with HIV-AIDS) were ready to be interviewed, initially asking potential participants if they agreed to be approached by the researcher to be invited to participate in the study. The researcher offered the participant information sheet to be read to the participants; if they were willing to participate, they provided written consent. Participants were encouraged to reflect on generally-accepted healthcare services and discuss their situations when interacting with nurses. Interview guides were used to remind researchers of the topics covered and ensure that all major topics were covered, including discussions of life experiences during their interactions. The participants were interviewed in a separate quiet room with treatment services that had been prepared in advance at the Community Health Centers. They had the option to stop the interview at any stage, if they wished. The results of individual interviews were recorded using cell phones, carefully written, and confronted with nonverbal responses through field notes for data analysis, and then reviewed to improve data accuracy [23]. --- Study design A phenomenological qualitative approach was used in this study [24]. The sample was selected through purposive sampling of patients with HIV-AIDS. To gain meaningful perceptions and experiences, the researchers recruited a diverse and representative sample that reflected the population of people living with HIV-AIDS. The inclusion criteria in this study were as follows: (1) people living with HIV-AIDS who were hospitalized or outpatients, (2) people living with HIV-AIDS who have had HIV-AIDS for more than two years, and (3) people living with HIV-AIDS routinely seeking treatment. Meanwhile, the exclusion criteria were people living with HIV-AIDS who were seriously ill; therefore, interviews were not possible. Data saturation was the final limit for determining the number of samples. Data saturation was reached at the 21 st interview because no new information emerged [23]. To strengthen the data, an additional participant was interviewed to ensure that no new information was obtained. Therefore, for the 22 st participant, data saturation was achieved. Furthermore, the researchers conducted a thematic analysis using a deductive method approach [23] by exploring important themes that described the phenomena that occurred in people living with HIV-AIDS when interacting with nurses. --- Data analysis All interview recordings were rewritten verbatim, coded, and labeled, and transcription of all data was carried out to be consistent with data reflection activities and used to determine new ideas. Interpretative Phenomenological Analysis was used for data analysis [25]. Researchers have also developed an Interview Guide (Box 1) based on the research objectives and the existing literature. Interview transcripts and field notes were read carefully and repeatedly to determine emerging themes by reading sentences in detail and then categorizing important terms that were related to each other through a selective approach. The researchers read the text collectively, tried to understand the overall meaning, and developed keywords and concepts through dialogue with the text. Additionally, the researchers maintained openness by reflecting on various interpretations to monitor assumptions and biases through the triangulation process, namely, linking interview data with field notes to clarify what is meant by clarifying to participants [26]. --- Box 1. Interview guide. The interview guide was developed for individual interviews based on a literature review. The interview guide was piloted with two HIV-AIDS sufferers. The content of the guide was relevant with no amendments required and included open-ended questions such as: 1. What has changed since you suffered from HIV-AIDS? Each sentence was analyzed by the researchers and confronted with data in the field notes. These themes were then reconstructed into a description of the life experiences of people living with HIV-AIDS that nurses overlooked when interacting [26], The researchers then connected categories based on the events experienced, and always paid attention to the balance of research themes by looking at each part as a whole. --- Ethical considerations The research procedure was performed in accordance with the principles of the Declaration of Helsinki and was approved by the Research Ethics Committee of the University of Muhammadiyah Lamongan (number:085/EC/KEPK-S2/05/2021. All participants provided informed consent and were told that they could withdraw from the study at any time. Informed consent was obtained from each study participant for publication of their responses while maintaining anonymity, and the place and time for the interview were arranged to maintain privacy and confidentiality. The respondents' identities were anonymized to maintain confidentiality. --- Results Broadly speaking, the theme that emerged was that people living with HIV-AIDS received limited attention regarding their psychosocial problems when interacting with nurses. Six sub-themes were found to support the overall theme:1) Difficulty in social access, 2) Forced to accept their situation and suppress their will, 3) Wanting to be recognized as others in general, and 4) Social stigma and self-stigmatization that affects the surroundings, 5) lack of enthusiasm for life expectancy, 6) always imagining being in the shadow "when death picks up.". --- The difficulty of social access HIV-AIDS affects all personal aspects of people infected, including social access, which makes them disconnected and lose their future. As a participant said: "I used to work, make friends, and hang out with other friends and family like normal people before I got this disease (HIV-AIDS) . . . but right now it's really hard for me to do these things. I feel forced to concentrate on a strict routine of treatment and self-care programs for my disease." (P-16). This situation causes people living with HIV-AIDS to lose control of their lives, lose enthusiasm, become disappointed, and regretful. According to a woman: "My condition prevented me from doing what I wanted. There's nothing I'm proud of myself right now, so I'm so sad . . . I'm so traumatized that I have to erase all my dreams. (P-03). --- Forcing to accept their situation and suppressing the will Participants often cited self-acceptance as a very positive attitude in their lives, and they were able to calm down even though they realized that it would take some time. One of the participants said: "I have to accept my condition. I don't force myself to do things that are difficult for me to do . . . I try not to be confused and not to worry, because I have to condition this situation." (P-10), The situation experienced by HIV-AIDS patients forces them to accept their situation, even though there is a desire to rebel. "I let my illness damage my body, I accept it even though I have to lose my beauty . . . it's already done. . . unless I surrender to God, maybe this is a way of life that I have to accept" (P-09). --- Wanting to be recognized like other people in general The perception of "pressure-free" in daily life makes participants feel that their lives are more relaxed, comfortable, and free, and their emotions more controlled. All desires can be carried out, such as getting along with everyone, and everyone can see them as normal people on an equal footing. Similar to what this lady said: "I want to be like him (a volunteer HIV-AIDS assistant who is also an HIV-AIDS patient) . . . it turns out that he can be like normal people in general . . . he is very relaxed. Having this disease (HIV-AIDS) can lead to a life where you do not have this disease. Finally, I believe that I can live a life like others because what he can do I can also do, even though I have to struggle." (P-08). They wanted others to treat their illness like any other infectious disease. They also did not want to be seen as "different" from their surroundings. Another participant pleaded: "I realized that I had this disease (HIV-AIDS) . . . but I didn't want the Health Officers to ask me what disease it was . . . he should have known what disease I had. He looked like he didn't know and didn't want to know my feelings. And should I answer that question (about HIV-AIDS) when many people ask me?" (P-05). --- Social stigma and self-stigmatization can affect surroundings This theme shows that people living with HIV-AIDS are aware that they are limiting their family life. Concurrently, they feel the need for their family. Participants believed that their condition had a negative impact on others. They believed that they were limiting their family life and that they were a burden to their family, but also desperately needed constant attention. One of the men expressed his feelings: "I feel very sorry for you (wife), because you carry a very heavy burden . . . I am being treated; you are also willing to wait for days when I have to go to the hospital, take me to control treatment at the hospital, and always accompany me . . . Activities in the surrounding community, as well as daily work, are always left to you, and makes it difficult for you" (P-06). This makes people living with HIV-AIDS feel tired, unmotivated, and hopeless. To avoid bothering other family members, they did not want to express their grievances. However, they felt ambiguous between wanting to be helped because they were still weak and needed help, and a desire not to bother their families. Some patients said that family support was important, but they felt frustrated that the support provided was useless and only inconvenienced their family. "My brother plays a significant role in my life; he watches me all day and helps me with everything. Without him, I don't know what will happen to me. However, I know that he only thinks about me and doesn't care about my needs. I feel bad . . . I am very sad because it always bothers my family, even though the effort is not worth the results obtained . . . until now, I have not shown any significant changes." (P-15). --- Lacking enthusiasm for life expectancy Having hope is the main weapon for people living with HIV-AIDS to survive and fight the disease, especially when the disease begins to progress. This hope helps them optimistically look to the future; however, it is that they never get. One mother said: "I always hope that I could live this life well, that this life deserved to be enjoyed. . . but my body is always controlled by this disease, it seems there is nothing to wait for (HIV-AIDS)' (P-02). The participants hoped that their illness would improve, but when they waited for hope, there was only despair, because what they wanted was never achieved, but when they never hoped, they wanted to get better quickly, as shown by the following quote: "The support of the people closest to me has helped me a lot . . . however, when they are beside me, I feel that the support cannot change my condition . . . I am still like this and always filled with suffering" (P-07) --- Always imagining the shadow "when death picks up" This theme describes the recurring thoughts of the patient about death. HIV-AIDS is frightening, as if death is in sight. Meanwhile, on other occasions, they are resigned and ready to face death. Some participants expressed that death was coming soon. A man expressed his feelings in the following way: "I know that the medicine I take is only to survive . . . only a few people survive, and in the end they also face death. Especially when I experience chills, I'm so scared, and I always think that my end has come" (P-18) Other participants also revealed: "I just surrender, and I'm ready to be picked up by death at any time" (P-17) Meanwhile, there were participants who wanted to die. In this case, death is seen as a solution to end their suffering, so there are those who think about planning suicide. One teenager confessed the following: "I am very tormented by this disease (HIV-AIDS), I don't think I can stand this suffering, and at some point in the day, I even think about ending my life, so I don't have to endure this suffering for too long." (P-21) --- Discussion Overall, this study emphasizes the physical impact of HIV-AIDS that affects feelings, purpose in life, and relationship with their immediate environment and social life, and several previous studies have reported social restrictions due to the negative impact of HIV-AIDS [27]. Uncertainty about their health condition is an additional feature, as a result of suffering from HIV-AIDS, as in this study [28]. However, previous studies have focused on behavioral followup of strict treatment regimens [29], medication adherence and routine control behaviors [30], and others have reported beneficial effects [31]. Despite these benefits, they are forced to make changes from routine activities that must be undertaken into new patterns of social life, and this requires major changes and readjustment into a personal life that can cause considerable discomfort to them. Regarding events experienced by people living with HIV-AIDS that make sufferers feel depressed, nurses must be physically present to discuss what to do, examine previous experiences, and help them assess and decide how to maintain their lifestyle to meet the self-care needs of people living with HIV-AIDS and/or modify their physical, psychological, and social environments according to their current situation, conditions, and demands [32]. Furthermore, other studies have also reported that having HIV-AIDS can lead people to see a change in their identity, and ultimately, they are able to judge and realize that they will never be who they were before [33]. However, this study has reported that this perception has a very negative impact on nurses, leading to prolonged sadness, stress, low motivation, and withdrawal, and it is increasingly difficult for nurses to understand if they are introverted and unwilling to express their feelings. This situation is a major problem that must be considered, and several researchers have reported positive consequences of efforts to increase self-esteem [34]. This is an important study by nurses to build effective communication that focuses on problems related to their ideas, thoughts, feelings, and hopes, through which nurses can contribute to altering their self-concept through changes in the construction of new identities [35]. The findings that nurses should be wary of are that participants conceal their problems and are unwilling to open up with nurses, even with their families, and they secretly make plans beyond common sense without the family's knowledge. This behavior is detrimental to them because they do not have time to share their experiences and stop their routine activities. However, this is not the case with the results reported in studies related to other chronic diseases where patients always express their feelings [36]. Family members had a positive influence on the disease process analyzed, especially those related to daily activities and psycho-emotional support. Other studies also support this finding, which explores the perspective of families in supporting people living with HIV-AIDS regarding their quality of life related to the burden borne [37]; many families are forced to change their lifestyle to provide support to those they care about [38]. Therefore, it is important for families to learn patterns of providing support and combining meaning in life for the benefits provided. This study also highlights that people living with HIV-AIDS have recurring thoughts about death. Another study also reported the same situation, especially when it came to the vital threat felt by patients with terminal cases so that they had difficulty expressing their feelings [39]. The results of this study highlight the concerns and suffering as part of their life experiences, especially those who are extremely scared of the possibility of dying, and some patients like this, as reported in this study [40], are not prepared for the possibility of death. However, despite the results of this study, qualitative studies have reported that some patients face this process calmly, there is no burden in their lives, and they see their illness as part of a life cycle that must be accepted [41] because all humans return to God. The results of this study also showed that some participants had a desire to end their lives and might view death as the best way to end their illness, as reported in this study [42]. Furthermore, this study also found a desire for a patient to end his life to end his suffering. Regarding the consequences of this problem, other studies have also reported that the roles of family and health workers worsen their psychological condition because they seem to let these patients die as if they avoid their duties and responsibilities [39]. However, there is a glimmer of hope for a terminal patient, such as a person living with HIV-AIDS, to enjoy his life, and if he has to die because of his condition, the hope that arises is to die peacefully and happily. In all these circumstances, it is important for nurses to establish effective communication with patients in a "physically present" effort, which is a starting point for understanding the possibility of death [43]. In the context of interactions in nursing, patients feel that the nurse is always there. This meeting makes them willing to discuss their panic so that it can increase prosperity and peace [44], as patients and their families wish nurses to be present in their situation. A strong desire to be able to enjoy life as a person who does not have a burden and hopes that the environment also accepts people with HIV-AIDS is an interesting finding to be discussed in this study. This finding is relevant to the goals and expectations of a prosperous life in their environment that they have experienced before suffering their illness. This is obtained when the environment around them does not make them feel depressed, so that they can live without psychological burdens. However, there have not been many reports in other studies that have been found to campaign for "free of stigma and discrimination" for people living with HIV-AIDS. However, several studies on other chronic diseases have discussed the importance of an atmosphere free from stigma and discrimination, and to this end, have discussed the importance of a stress-free life as a key to the psychological well-being of many of these patients [34] Several studies have acknowledged that people with chronic diseases need to recover their perception of a state without mental stress and adapt to a new environment [45]. In line with this, researchers have also found that people living with HIV-AIDS want to be identified as people suffering from the disease in general and there is no "emphasis of the HIV-AIDS accent word" for their disease in their environment. In this case, the stigma experienced, both social stigma and self-stigmatization, by people living with HIV-AIDS, is also experienced by those suffering from other chronic diseases [36]; therefore, as the findings of this study show, some people in their environment try to isolate them. In this case, as also reported in this study [46], living with an HIV-AIDS person is felt very differently and is considered psychologically stressful, and these feelings can lower self-esteem and increase insecurity. Another interesting finding of this study is their expectations. The participants agreed that there was a desire to live like they did before the illness, and this was to improve mood, quality of life, and a prosperous life [47]. On the contrary, as the researchers have seen in this study, when hope is far from the mind, despair and sadness become part of one's life, which is in line with this study [48]. This negative emotional response has been discussed in depth among people living with HIV-AIDS. In addition, this study also found that there was no hope for patients in crisis and unstable situations, thus giving the impression of being helpless in their fight against the illness. Studies conducted on other populations show that hope is an important mediator of effective coping strategies, although this is very difficult to be shown by patients with terminal cases [49]. It is important for nurses to find the relevance between expectations and problem-solving strategies faced by people living with HIV-AIDS, that the presence of high expectations from people living with HIV-AIDS allows nurses to motivate patients to decide on appropriate actions and overcome obstacles, including their experiences as a result of the disease. In this context, the nurse plays the role of a motivator and initiator in seeking a meaningful future in their lives [50]. --- Limitations The participants in this study were comfortable expressing their experiences while interacting with nurses during the ARV treatment program, but with different characteristics and emotional responses, their perceptions may also be different. They were very careful about expressing their feelings. In addition, the way they expressed their feelings also differed. In addition, they also did not want to be open to expressing all their wishes and hopes for the services provided by nurses because the focus of service was centered on definitive treatment. Although both pose potential limitations, they are not a barrier to obtaining natural and complete data. Armed with a therapeutic communication approach, all physical, psychological, and social problems can be expressed comprehensively. The analysis is based on the data that have been found, but triangulation with experts and HIV-AIDS program holders may contribute much more to their knowledge and perceptions through a professional approach, including with health care workers. --- Conclusion The interaction framework between nurses and clients in this study has made it possible to gain a greater knowledge and understanding of the meaning of the life experiences of people living with HIV-AIDS and to encourage new changes in providing nursing care for these patients. Furthermore, nurses innovate and reshape the nursing service system, which is centered on an individual approach. Therefore, nurses can position themselves optimally to become familiar with the patient's experience, and emphasize and maintain interpersonal relationships with patients and their families. This strategy will result in better nursing services and greater satisfaction for patients and professionals who care for them. vol. 11, no. 10, pp. 306-312, 2020, [Online]. https://www.sysrevpharm.org/articles/adaptive-strategyof-womens-leprosy-in-indonesia-psychic-experience-of-women-with-leprosy-in-living-a-community-life. pdf. --- All relevant data are within the manuscript and its Supporting information files. --- Supporting information --- S1 File. (DOCX) --- Author Contributions Conceptualization: Abd Nasir, Ah Yusuf, Fanni Okviasanti. --- Data curation: Makhfudli, Yanis Kartini. Formal analysis: Abd Nasir, Ah Yusuf, Susilo Harianto, Fanni Okviasanti. Methodology: Ah Yusuf, Fanni Okviasanti. Supervision: Abd Nasir. --- Validation: Makhfudli. Writing -original draft: Abd Nasir, Ah Yusuf, Makhfudli, Yanis Kartini. Writing -review & editing: Abd Nasir, Ah Yusuf, Susilo Harianto, Fanni Okviasanti.

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Coping Strategies Used by Indian International Students to Overcome Transitional Challenges in the United States

technologies.

Introduction Many international students travel to Western countries to pursue higher studies. According to UNESCO (2019), the international student population increased from 2 million in 2000 to over 5.3 million in 2017. More than 50% of these students are enrolled in the U.S., Europe, and Australia. After China, the second most common international students come --- Impact of Transitional Stress on Students The process of leaving their home country to study overseas makes international students homesick and alienated. They encounter culture shock due to the new academic environment, food, and unfamiliar climatic conditions. This transition process causes transitional stress among international students (Arthur, 2003;Johnson & Sandhu, 2007), negatively impacting their psychological, emotional, sociocultural, and academic well-being (Arthur, 2003). The transitional stress is manifested in various ways, such as anger, anxiety, cognitive impairment, confusion, exhaustion, defensiveness, depression, disorientation, exhaustion, fatigue, fear, gastrointestinal problems, headaches, homesickness, inferiority, insecurity, insomnia, irritability, lack of energy, loneliness, loss of appetite, loss of control, mood swings, muscle tension, overeating, resentment, sadness, sense of loss, unfamiliar body pain, and vague bodily sensations (Arthur, 2003). These findings were recently confirmed by other research studies, for instance, by Ching et al. (2017) and Kornienko et al. (2018). There has been a concern that international students might have low graduation rates because of the academic difficulties they encounter, such as being weak in the English language (Fass-Holmes & Vaughn, 2014), not understanding American teaching style (Ota, 2013;Roy, 2013), difficulty in maneuvering through new campus environment (Ota, 2013), and difficulty in interacting with fellow American peers and faculty (Roy, 2013). Though international students encounter academic challenges, they have been found to succeed academically (Fass-Holmes, 2016). However, their self-esteem decreased because of academic difficulties (Constantine et al., 2004;Lyken-Segosebe, 2017), reducing their work and personal life satisfaction (Shupe, 2007). --- Coping Strategies According to Lazarus and Folkman (1984), coping is a process where people evaluate their situation and consciously choose an effective coping strategy to solve their problems. Coping strategies are classified into emotion-focused and problem-focused (Lazarus, 2006). An emotion-focused coping strategy is where people try to distract themselves from stressful situations or reduce the negative emotions caused by such situations, for instance, by exercising, meditating, praying, or using relaxation techniques. A problem-focused coping strategy is where people solve stressful situations, for example, by identifying the source of the stress and eliminating it, seeking help to manage the situation, or detaching oneself from it (Folkman, 1997(Folkman, , 2013)). In most stressful situations, particularly in transitional stress, using emotion and problemfocused coping strategies are found to have influenced with effective outcomes (Lazarus, 2006). Prior research has highlighted that international students use diverse emotion-focused and problem-focused coping strategies to overcome transitional challenges (Alazzi & Chiodo, 2006;Vasileiou et al., 2019). For instance, Alazzi and Chiodo (2006) conducted a qualitative study with eight Middle Eastern students studying at a U.S. university. They found that the participants identified the cause of a problem and understood the consequences that could occur if the problem was not solved. In addition, the participants who considered themselves capable of solving their challenges had superior coping skills. Further, participants coped with loneliness and homesickness by engaging in religious activities, keeping themselves occupied at work, and maintaining good relations with family and friends. Such coping strategies were found to increase the confidence and happiness of the students (Alazzi & Chiodo 2006). Similarly, Poulakis et al. (2017) conducted a qualitative study to explore transitional stress among eight Greek international students studying in the U.S. They found that the participants developed strong relations with their families and peers to overcome their homesickness that helped them in gaining emotional support. In another study, engaging in positive self-talk, listening to music, and diverting oneself from thinking about home served as helpful coping strategies and promoted the overall well-being of fifteen international university students studying in the U.K. (Vasileiou et al., 2019). Concurring with this finding, a qualitative study conducted at a Malaysian university found that positive thinking and engaging in extracurricular activities such as exercising, reading, and praying increased studentsʼ self-esteem (Saravanan et al., 2019). Additionally, taking the responsibility to understand the academic system of the host country, and honing their English language and social skills, helped five Latin American students overcome academic fears at a U.K. university (James, 2018). Also, focusing on developing communication skills, working hard, and engaging in community activities overcame transitional stress among 413 international students studying at a U.S. university (Mahmood & Burke, 2018). --- The Goal of the Study Literature indicates that transition is a process where regardless of the country international students transit to, they initially encounter transitional stress. Additionally, the more the difference between the home and the host countries in terms of cultures, attitudes, and academic systems, the more the transitional challenges and stress (Pham & Tran, 2015). Students transiting from India to the U.S. encounter significant transitional challenges because of the vast difference in the cultures and academic systems of India and the U.S. Therefore, to help students from India adjust to the U.S., it is vital to know the coping strategies used by previous Indian international students to overcome their transitional challenges. However, minimal research has focused on the coping strategies employed by Indian international students in the host countries. Thus, this study aims to (1) explore the coping strategies used by students from India to overcome the challenges in the U.S.; (2) promote awareness about various coping strategies; and (3) provide information to international student counselors to enhance the coping of Indian international students. --- Method Design A qualitative phenomenological methodology was employed to conduct this study. Considering that Creswell (1998) suggested a sample size ranging from five to twenty-five participants, while Morse (1994) recommended a minimum of six participants, a convenience sample of six Indian international students enrolled in a research-intensive public university in the southern United States was selected. The participants for this study were selected using the purposive sampling criterion, wherein participants are chosen based on their ability to provide comprehensive information concerning the phenomenon under investigation (Patton, 1990). To conduct purposive sampling, it was imperative to specify parameters for selecting study participants (Merriam, 1998). Accordingly, the following criteria were used: Participants must have been born and studied in India; they must not have visited the U.S. or any other country before enrolling as graduate students in the U.S; they must have lived in the U.S. for over a year; and they must be graduate students. --- Participants Six international students from India took part in the study. Of these, five were doctoral students, and one was a masterʼs level student. At the time of data collection, the participants had lived in the U.S. for 2-11 years. All the participants were given the following pseudonyms to protect their identities: Krishna, Vishnu, Pragya, Shreya, Rishi, and Arjun. --- Procedure Upon obtaining the ethical clearance for this study from the Institutional Review Board (IRB), participants were invited for an interview. The interview protocol consisted of seven probes that explored the coping strategies used by the participants to adjust well in the U.S. The duration of the interviews ranged from 1-2 hours. The first author conducted interviews in the universityʼs library, labs, and cafeteria. We informed participants about the confidentiality procedures before the interview. We took permission from them to record and transcribe the interviews. They were also told that they could withdraw from the interview at any time. The interviews were recorded and transcribed verbatim. The transcribed data were analyzed using the phenomenological methodology. --- Data Analysis Based on Moustakasʼ (1994) modified version of Stevick-Colaizzi-Keenʼs method, the data analysis was performed using the following ten steps: (1) Epoche: When applying Epoche, Moustakas emphasized that the researcher must avoid preconceived notions about the phenomenon under study and instead concentrate on the data provided by the participants to understand the phenomenon from a newer perspective. Accordingly, the authors refrained from their thoughts, feelings, and assumptions regarding the coping strategies to obtain a newer understanding of the various coping strategies that can be employed for successful adjustment in the host country; (2) Obtaining an understanding of the data: To understand the data, all six recorded interviews were listened to multiple times to ensure the accuracy of the transcripts. Also, the transcribed interviews were read multiple times to better understand the participantsʼ viewpoints; (3) Horizonalization: This is a process of identifying verbatim parts of the transcribed interviews that explain the phenomenon (Moustakas, 1994). Accordingly, all interviews were thoroughly analyzed to determine significant verbatim parts describing the phenomenon of coping strategies; (4) Identifying the invariant constituent: Invariant constituents were identified by abstracting and labeling the statements essential in understanding the coping strategies. The statements that did not meet the criteria were repetitive, overlapping, or vague were deleted; (5) Identifying themes: The identified invariant constituents were placed under each heading, forming the fundamental themes of coping strategies; (6) Individual textural descriptions: In this step, descriptive narratives of each participant were developed based on the horizonalized statements, invariant constituents, and the themes identified in the previous step; (7) Individual structural descriptions: Here "Imaginative Variation" was applied (p. 33) "to arrive at structural descriptions of an experience, the underlying and precipitating factors that account for what is being experienced." (Moustakas 1994, p. 98); (8) Composite textural description: Inductive reasoning and analysis were used to combine the individual textural descriptions of all the participants formulated in step 6 to present a portrayal of the descriptive narratives of all the participants as a group; (9) Composite structural description: The individual structural descriptions were combined to formulate a composite structural description using imaginative variation, to describe what the participants, as a group, experienced and how they felt after employing those strategies; and (10) Textural-structural synthesis-essence of the phenomenon of coping strategies: This step involved combining textural and structural descriptions to understand the essence of the coping strategies from the participantsʼ perspective, which is the goal of this study. Lastly, member checking was performed to establish the trustworthiness of the transcribed data. The participants were contacted a second time after the primary interview to peruse their transcribed interviews and make any changes to ensure the accuracy of their responses. --- Findings The phenomenological data analysis resulted in the following four coping strategy themes: (1) open-mindedness, (2) goal-orientedness, (3) independent attitude, and (4) showing gratitude. The participants utilized these strategies to solve the transitional challenges encountered in their personal and academic lives in the U.S. The findings also indicated specific thoughts and actions that helped the participants acquire the identified four coping strategies, as shown in Figure 1. --- Open-Mindedness When the participants transited to the U.S., they struggled to form friendships and missed their home countryʼs culture and atmosphere. For instance, Pragya stated: If there was a word that could multiply miserable times by thousands, thatʼs how I felt. I did not like it here at first. I didnʼt want to meet anybody. I just wanted to go back home. I feel lonely, not being able to express my true feelings to somebody. Having to suppress my feelings and not being able to talk about certain things certainly makes me feel lonely. One coping strategy that helped participants form social bonds was being open-minded. According to the participants, open-mindedness is a mindset where students accept diverse people, ideas, and information. They demonstrated open-mindedness in various ways. For example, Shreya became more flexible, discouraged herself from judging people, initiated contact, and learned to be more expressive. Explaining, she commented: I had to keep an open mind and let things go. You cannot have everything according to the way you want, as you have it in India. Do not judge anyone based on their actions. Keep in contact and good contact with as many professors and administrative people over here in the university. And if problems arise, tell them immediately. Do not wait or think it will not be done. Just ask them. Arjun gave up generalizing and stereotyping. He expressed: I learned that many perceptions are out there; they are all different, not right or wrong. They are just different. Also, when you are in India, you have some stereotypes, but when you start interacting with people from different countries, you start realizing that, ʻI need to discard a lot of these stereotypes that I carry.ʼ I have broadened my thinking and my mindset. In terms of my worldview, I have broadened. Rishi became more accommodating. He opined: One needs to learn how to share an apartment and how to share life with others. You have to be really flexible and open to adjusting to the setup here. One canʼt be firm and say, ʻNo, I like to do this; I wonʼt do that.ʼ You must be open and adjust; thatʼs the only way to survive. Rishi also invested an effort to understand the host culture: I understood that if you are in a society, you must understand it. For that, you need help from Americans. You need to open up more with Americans; ask them general questions about their background or education, but avoid personal questions. Once you start approaching, maybe others will also begin approaching from their side. That way, communication develops. Further, emphasizing on being more versatile, Rishi said: Most Indian students are very academically oriented. Outside of studies, they donʼt know anything. But they can change all those perspectives here. For example, they can join a hiking club. They can learn salsa, develop an all-round personality, and not just confine themselves to their department and apartment. Vishnu learned to be forthright. He explained: You need to be a lot franker over here --- Goal-Orientedness Participants got absorbed into the problems they encountered in the U.S. For instance, Shreya felt unhappy and angry when she saw a difference in her professorʼs treatment of her and her colleagues. She explained: When you see a difference in the treatment from anybody, you really get very angry and frustrated because you cannot speak up. Because you know that if you speak out, people will not like it and the relationship with them would be affected. You cannot go to your seniors, because for them itʼs a trivial matter and you think as to what they would think about me if I go every time and complain every time this happens. To overcome such difficulties, participants emphasized being focused and goal-oriented. Shreya explained, "you have come here to achieve a goal. Keep your goal in mind and keep doing that." Pragya believed that "the incoming students should imagine themselves five years from now. They should have a goal in mind, which could be educational, professional, personal, economical, or social, and try to reach it." Rishi said: "Success rate in graduate school determines the studentʼs career and, accordingly, his/her happiness. Therefore, students should be earnest in setting goals and work diligently to accomplish them." Vishnuʼs goal was to excel in academics. He explained: Having a goal in mind in very essential. Enrolling in courses with a ʻwhatever worksʼ attitude is a serious mistake. Instead, courses should be selected based on interest and passion, so that we continue to excel in them. My goal was also to make my life in U.S. smooth. I had already met people; spoke to people right in India; we had gotten to know each other; we came here as a group; I already knew my roommate, fixed over there; and we had an apartment. I came to know of the India Association at Nurture University, who helped us. Arjun explained the importance of being goal-oriented and said, "If you are goal-oriented and focused, you can come out with good outcomes in the U.S. You have an opportunity to be recognized and excel if you want to. So, one must focus." --- Independent Attitude Another challenge that participants had to overcome was being dependent. Pragya stated: "my parents would protect me a lot, as a result of which I was much more dependent on them for decisions. Here, I am on my own, which is difficult." Similarly, Shruti stated: In India, you are not working when you are studying. So, when you are studying, you are concentrating a lot on your studies and your parents are very supportive throughout those 3 years. So itʼs basically just studying and you are not expected to do much else. But, here itʼs very difficult, like when you are just 18, and you have to adjust to cooking, cleaning and living on your own, navigating through classes and making all the decisions on your own. Itʼs difficult. Back in India, parents take care of a lot of things, which would not be the case here. So, you would have to adjust to many new things after coming here. Participants emphasized cultivating an independent attitude to overcome this barrier, where they depended on their capabilities to accomplish tasks instead of relying on others. Participants had to completely change their beliefs about becoming self-reliant and independent. Explaining, Vishnu stated: In the United States, you are not just a student; you need to do everything by yourself in terms of cooking, laundry and so on. In India, you can just sit and study and your mom brings you tea or coffee. Here, if you want coffee, go make your coffee. You have experienced being pampered and living a happy life. Now go out to the real world and do the same things without all that support. Further, Rishi commented: Developing independent thinking and taking charge of your own life is very important. Rediff.com has a section for prospective students coming from India to the United States. India Association has a nice FAQ list, things to do, what to expect. Reading this information helps. Reading and talking to students already in the United States helps. Krishna took the initiative to solve problems on his own: I believed that I will get over the situation. I asked for help from my friends or relatives. I asked myself as to what makes me happy in U.S., instead of dwelling in negative thinking. And once I did this, I knew what exactly I needed to do. Re-emphasizing taking oneʼs responsibility, Shreya stated: I learned not to keep too many expectations. I prepared mentally that I am alone here, I have to stand on my feet and take care of myself; there is not going to be anybody to take care of you. There will be problems, and it will take time to adjust. Similarly, Vishnu said, "I feel that you are 23, you are grown up and are responsible. Start living your life. So, I think having at least that confidence level is fair. Donʼt expect anyone to pamper you at this point." On similar lines, Pragya stated: We must be independent here. Life here is not as rosy as you see on television. Itʼs shockingly different. Therefore, its important to go out and meet different people, but never forget your goal, which is to study and be responsible. Reading, keeping in touch with current affairs of United States, asking as many people as possible for their opinions are all important. Being independent helped the participants increase their self-confidence and inner strength. They became their own support system. Vishnu commented, "being independent helps you grow emotionally and mentally. Thatʼs how you learn things and solve problems on your own." --- Showing Gratitude Difficulties in the U.S. made participants delve into negative thinking, making them sad and stressed. For instance, Krishna described his initial days in the U.S. as "hell." Explaining, he stated: The daytime was split between loads of academic formalities, facing fierce competition for funding and course enrollment, meeting professors and prospective employers, sorting out living situation (lease, grocery, account, purchases), and staying in touch with family and friends back in India. In whatever little that was left of nighttime, it was very common to think of the reasons for coming here; occasional crying, self-consoling and wondering if all of it was worth the efforts. To overcome this challenge, participants began identifying the reasons they were thankful for. Vishnu stated: I am thankful that this country has accepted me. You came here to study. Do what you have to do and continue with your life. We are in a foreign land, and it is important to express our gratitude to the country that is providing us the opportunity to pursue our academic dreams and aspirations. Yes, if you cannot get into NASA, there is nothing wrong, because they ask for citizenship, and you are not a citizen. Sometimes people would say, ʻI am not feeling good,ʼ and I would say ʻthink of any other international who were in India and think about what they would be going through.ʼ I mean, socially, we may also not be perfect, you know, in terms of treating an outsider in our community. So you need to think of it in that aspect and say, ʻok, this is not something really bad that happened to me, this is something that people sometimes undergo,ʼ not a big deal. Further, showing gratitude to his professor, Vishnu stated: My advisor has been great as far as mentoring is concerned. I like his style because he is an advisor and thatʼs all he does, advise. He says, ʻI am your advisor, and you are my student. We should always keep arguing and when you start winning more arguments than I do, itʼs time for you to graduate; that's a very cool concept, and I love that idea.' Heʼs been a very good mentor and a role model that I would like to be like. He sends us out to conferences and says, ʻGo talk to the professors; find out what they are doing, what their students are doing and try and see if you can collaborate with them.' So, things like this really help in the long run. I would have to give a lot of credit to my advisor for allowing us to do all this. Shreya expressed her gratitude by returning favors. Explaining, she commented: Friends help you a lot in adjusting. If someone helps me, I make sure that I return the favor or at least stay in touch with them. Just making use of a person and going is not good. That starts affecting other people too. House some people in your apartment, because they really need it, and the people who stay there should take care of people living in the house. Just donʼt be a problem for the person. In terms of expressing gratitude to the host society, Rishi stated: Whenever I go and talk to Americans, I know I am an outsider. I am not a part of this society, be it in terms of language or culture or anything. Usually, I talk with a sense of gratitude. I ask myself this question -suppose the same situation was reversed; letʼs say, this is India, you are an Indian, and they are Americans; itʼs like role reversal, will you be so acceptable? Will you be so welcoming to other cultures? Will you be so forthcoming to help others? If you see everything in that light, then what you see is definitely a service to you. So, in that sense I donʼt have any questions. Participants expressed that showing gratitude developed a positive frame of mind, which helped them integrate into the academic and social lives of the host country successfully. Thus, showing gratitude served as an effective coping strategy to adjust to life in the host country. --- Figure 1 Thoughts and Actions That Led to the Identified Coping Strategies Thoughts and Actions Coping Strategies --- Discussion The present qualitative study examined the coping strategies of Indian international students in U.S. higher education. Four specific coping strategies were identified: open-mindedness, goal-orientedness, an independent attitude, and showing gratitude. The participants reported that being open-minded helped them develop a more positive approach to dealing with challenges in the host country. Establishing clear goals for oneself helped them adjust to their academic and social life. Furthermore, a belief system that one must be independent and not rely on others increased participantsʼ self-esteem and happiness. Finally, developing the trait of having gratitude aided the participants in valuing the opportunities they received. Additionally, this study identified ways in which the above-mentioned four coping strategies can be acquired, as delineated in Figure 1. The results of this study indicated that the coping strategy of being open-minded aided participants in becoming more flexible in integrating and making friends from diverse cultures instead of limiting themselves to their own culture. This prevented them from experiencing major culture shock and transitional stress in the host country. These findings concur with previous studies wherein open-minded students understood other cultural viewpoints better and adjusted effectively to the host country (Alsahafi & Shin, 2016;Mahmood & Burke, 2018;Zhou et al., 2018). Participants adopted open-mindedness by improving their communication skills, avoiding rigid thinking, and accepting people from diverse backgrounds and cultures. The second coping strategy is goal-orientedness. Focusing on achieving the set goals increased participantsʼ confidence, they excelled in academics, and consequently, their stress levels were reduced. This finding adds to the previous research, where the results indicated that goal-oriented students are more competent, less focused on problems, and less challenged due to transitional stress (Mahmood & Burke, 2018). Further, the present studyʼs findings are consistent with Park et al. (2016), who emphasized that setting goals related to developing a support system in the host country made the students feel more accepted by the host community. Participants achieved goal-orientedness by thinking in advance about the goals they wanted to achieve, setting achievable goals related to their academics, health, finances, and social skills, prioritizing their goals, and maintaining consistency in pursuing them. The third coping mechanism is to develop an independent attitude, which helped the students grow emotionally and psychologically, aiding them in solving problems. Independent thinking increased participantsʼ self-esteem. Vasileiou et al. ( 2019) viewed an independent attitude as a self-reliant coping strategy where the students recognized and accepted the problems and made a conscious effort to comfort themselves. According to Alsahafi and Shin (2016), independent students are responsible for improving their lives by developing healthy habits, such as avoiding substance abuse, encouraging more positive thoughts, honing their social skills, listening to music, and engaging in writing. Concurring with this finding, participants in this study took the responsibility to overcome their transitional challenges by becoming more independent. Participants achieved an independent attitude by realizing the need to be independent, taking the lead to better their lives, engaging in extracurricular activities, encouraging positive thoughts, honing their social skills, and taking the responsibility to solve their problems. The final coping strategy is showing gratitude. Being thankful helped the participants see the positive aspects of life and value the opportunities they received. This increased their satisfaction with the university, social interactions, academic system, and life, in general, in the host country. These findings were consistent with the previous literature that indicated a high correlation between expressing gratitude and contentment with the university experiences (Froh et al., 2008), developing healthy, long-lasting relationships (Emmons & McCullough, 2004), and enhancing student participation in the classroom (Flinchbaugh et al., 2012). Participants showed gratitude by returning favors and reciprocating to the kindness of others. --- Implications The participants in the present study employed four coping strategies that helped them successfully transit to the U.S. The most common resource materials provided by international student support services include online reading materials on their website, newsletter articles, and brochures (Madden-Dent et al., 2019). Therefore, the coping strategies identified in this study can be valuable to include in such resource materials to encourage coping skills needed for successful cross-cultural transition and adjustment. --- Limitations and Future Direction Although the sample in the present study met the requirements of saturation and phenomenological qualitative study (Lincoln & Guba, 1985;Strauss & Corbin, 1998), future studies should select larger samples. India is a large population where people differ based on their socioeconomic, linguistic, and cultural backgrounds. A larger sample of international students from India may allow students from different backgrounds to express their experiences. This information may be more beneficial for the diverse Indians who study overseas. --- Conclusion This study has highlighted the positive coping strategies that Indian international students use to combat transitional challenges encountered in the U.S. The findings indicate that the students can cope with such challenges by changing their thought processes and behaviors. Further, the findings add to the literature by discovering the role of openmindedness, goal-orientedness and showing gratitude for the first time in the international student population. The findings have implications for the stakeholders. The suggested coping strategies can be considered by higher education and could be recommended to the students during international student orientation and counseling sessions to help them manage their cross-cultural transitional challenges.

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Examining Parity among Black and Hispanic Resident Physicians

The US physician workforce does not represent the racial or ethnic diversity of the population it serves. OBJECTIVES: To assess whether the proportion of US physician trainees of Black race and Hispanic ethnicity has changed over time and then provide a conceptual projection of future trends. DESIGN: Cross-sectional, retrospective, analysis based on 11 years of publicly available data paired with recent US census population estimates.

INTRODUCTION The American Academy of Medical Colleges (AAMC)'s 2020 report demonstrates that the United States (US) physician workforce does not represent the racial or ethnic diversity of the population it serves. 1 However, efforts to diversify the physician workforce have been an active area of focus for decades. These efforts are partly in response to literature demonstrating health disparities among racial and ethnic minorities, increased health care access for underserved communities, and increased patient compliance when patients are cared for by physicians that connect with their social context. 2,3 Other works have shown improvement in patient care delivery and plan adherence outcomes with the inclusion of broader social perspectives in the culture of care delivery. 2,4 At a more fundamental level, independent of the patient benefits of increasing Black and Hispanic physician representation, governing bodies, national organizations, and member institutions recognize the importance of, and need for, a more diverse workforce. 1,3,5 However, many have found that efforts are inadequate to meet needs. The inadequacy of these efforts is in the setting of a growing body of work demonstrating ongoing barriers to a more diverse workforce; barriers that reflect persistent biases, racism, and discrimination within healthcare. [6][7][8] Despite this, and a growing focus on the topic, there is limited work that comprehensively explores trends in racial and ethnic representation among different medical specialties. 5 In an effort to understand our current state, we use the most comprehensive database on resident physicians to examine trends in the racial and ethnic diversity of Black and Hispanic physician trainees across the twenty largest medical specialties over the last 11 years. In addition, we present a conceptual illustration of what our future state could look like if the current trends continue. --- METHODS We reviewed 11 academic years (AY) of publicly available data on Accreditation Council for Graduate Medical Education (ACGME) training programs from the National GME Census (AY 2007-2018). 4 The National GME Census is a comprehensive database of demographic information on trainees in ACGME-accredited programs. Using AY 2007 data, we examined the proportion of physician trainees of Black race and Hispanic ethnicity among the twenty largest specialties; these account for the majority (81.4% in AY 2007 to 79.3% in AY 2017) of all ACGME trainees. To assess the presence of trends over the 11-year period, we used logistic regression modeling with the number of trainees aggregated by each of the 11 specialty-years, AY year as the predictor, and annual proportion of Black and Hispanic trainees as 2 outcomes. Odds ratios (OR) and confidence intervals (CI) were used to assess for direction and significance of trend; OR are based on statistical trend modeling for the 11-year period. To account for multiple testing, we used an alpha-level significance of 0.0025. We then focused on specialties with a significant annual increase in the proportion of Black or Hispanic residents and estimated the year in which these specialties would achieve representation proportional to the US population. To estimate projected annual increase (PAN) in population representation, we fit ordinary least squares regression models for the proportion of Black and Hispanic trainees using year as the predictor and Newey-West standard errors to account for autocorrelation. We used marginal estimation methods to generate out-of-sample predictions for proportions of Black and Hispanic trainees for each year (from 2018 onward) to calculate the number of years required for physician trainees in each specialty to reach the current racial-ethnic proportions of the US population. We used an alpha-level significance of 0.01 to account for multiple testing. The benchmark for proportional representation was the recent 2018 US Census population estimates for the US. We used Stata version 15 (College Station, TX) for all analyses. The institutional review board at Brigham and Women's Hospital by Partners Healthcare in Boston, MA, deemed this work exempt. --- RESULTS In 2018, 13.4% of the US population identified as Black and 18.3% as Hispanic. We found the total ACGME trainee population in AY 2017 included 5.5% who identified as Black and 7.8% as Hispanic. Obstetrics and Gynecology (10.38 to 8.62%) had the highest proportion of residents who identified as Black; Otolaryngology (2.56 to 2.34%) had the lowest proportion (Table 1). Among the 20 largest specialty training programs, Radiology was the only specialty with a statistically significant increase in the proportion of Black trainees. At the current pace, Radiology could take 77 years (PAN 0.13% (99% CI 0.07-0.19%)) to reach levels of Black representation comparable to that of the US (Supplemental Figure ). Obstetrics and Gynecology (7.36 to 10.14%) had the highest proportion of residents who identified as Hispanic; Dermatology (5.13 to 4.9%) had the lowest proportion (Table 2). Emergency Medicine, Internal Medicine/Pediatrics, Obstetrics/Gynecology, and Orthopedic Surgery demonstrated a statistically significant increase in the proportion of Hispanic trainees (Table 2). To achieve Hispanic representation comparable to that of the US population respectively, Orthopedic Surgery (PAN 0.14% (99% CI 0.06-0.22%)) could require 93 years, Internal Medicine/Pediatrics (PAN 0.20% (99% CI 0.03-0.36%)) could require 61 years, Emergency Medicine (PAN 0.20% (99% CI 0.12-0.27%)) could require 54 years, and Obstetrics/Gynecology (PAN 0.23% (99% CI 0.12-0.35%)) could require 35 years (Supplemental Figure ). --- DISCUSSION We found that Obstetrics and Gynecology had the highest proportion of residents who identified as Black or Hispanic, but no specialty represented either Black or Hispanic trainees in proportions comparable to the overall US population. In contrast to the 13.4% of the US population who identified as Black and 18.3% who identified as Hispanic, the majority of clinical specialties were found to have single-digit proportions of residents who identify as either Black or Hispanic. This absence of appropriate diversity is not limited to a particular discipline and is present in other primary care specialties (e.g., Family Medicine, Internal Medicine, and Internal Medicine/ Pediatrics). Furthermore, only a small number of specialties demonstrated statistically significant increases in the representation of Black or Hispanic trainees over time and, equally important, the majority of specialties showed no significant increases in representation over the period analyzed. The current pace for establishing proportional representation of Black and Hispanic trainees among the specialties we studied is absent for improvement in most, and in those with notable increases they are a generation (or more) away. A limitation of this conceptual approach is projections assume racial-ethnic proportions of the population will remain constant, at 2018 levels. Actual time-to-parity will inherently vary depending on how the US population changes over time. Our goal, however, was not to identify the exact year at which a certain specialty would achieve appropriate representation. Rather, it was to illustrate how the targeted change in representation is not being achieved with current efforts. We anticipate that this current illustration likely underestimates actual time to appropriate representation; the expected rate of change in diversity of the physician trainee population will likely lag behind that of the actual rate of change in the US population. We also anticipate that the US population will become less homogenous and more complex. 9 It should also be noted that the current study focuses on resident physicians of Black race and Hispanic ethnicity; we are unable to comment on other minority populations (e.g., American Indians/Alaska Native and Native Hawaiian/Pacific Islander). 5 These findings are concerning given that the resident population defines the future physician workforce. Even when resident diversity matches that of the US population, it will likely take decades still for this to translate into changes within the US physician workforce. Notably so given current AAMC estimates demonstrate that most US physicians are white (68.2%), while only a minority identify as either Black (2.6%) or of Hispanic ethnicity (3.8%), and that US physician demand is projected to grow disproportionately within minority populations. 1 A precursor to the resident physician population is medical students; an absence of diversity in medical school matriculants and medical students subsequently translates into an absence of diversity in the graduate medical education workforce. Although the AAMC requires medical schools to have pathway programs in place, and despite increases in the proportion of Black and Hispanic medical students, barriers and biases (e.g., implicit white race preference in medical school admissions, 10 insufficient recruitment and retention of individuals from racial and ethnic minorities, 11 and financial barriers to medical school for disadvantaged populations 12 ) within medicine make it less likely for Black or Hispanic candidates to succeed. Even among faculty, non-whites have disproportionately lower rates of promotion. 13 Consequently, non-white medical students and residents are faced with a low number of physicians with similar socio-cultural experiences that often facilitate mentor-mentee relationships. --- CONCLUSION We identify an absence of change over time in Black and Hispanic representation among resident physicians in nearly all medical specialties. In the minority of specialties with some degree of representation improvement over time, we find the time to proportional representation is decades (or a generation) away. Efforts to improve parity in representation to date have not resulted in an appropriate racial and ethnic representation among resident physicians. More direct action is needed to remove barriers limiting entry and success. To effectively address the persistence of underrepresentation within our workforce, we must acknowledge the systemic and structured biases that have shaped our profession's current demography and perpetuated the underrepresentation of Black and Hispanic physicians within medicine. Author Contribution: All authors had full access to the data; they take responsibility for the integrity of the data and accuracy of the data analysis. Corresponding Author: Christopher L. Bennett, MD, MA; Department of Emergency Medicine, Stanford University School of Medicine, Stanford, USA (e-mail: [email protected]). --- Supplementary InformationThe online version contains supplementary material available at https://doi.org/10.1007/s11606-021-06650-7. --- Declarations: Conflict of Interest: The authors declare that they do not have a conflict of interest. Publisher's Note: Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Reported Māori consumer experiences of health systems and programs in qualitative research: a systematic review with meta-synthesis

Background: Persistent inequities in health experiences and outcomes are observed for Māori compared to non-Māori in Aotearoa New Zealand. We conceptualised factors associated with Māori consumer experiences of health programs and services and characterise how the recommendations arising from qualitative research inform strategies to address inequities. Methods: In this systematic review, electronic literature searching was conducted in February 2018. Qualitative studies reporting Māori consumer experiences of health services and programs in Aotearoa New Zealand were eligible. Māori consumer experiences of health services were mapped to the WHO Commission of Social Determinants of Health (CSDH) conceptual framework on health inequities as related to: (i) the socioeconomic and political context; (ii) socioeconomic positioning; or (iii) intermediary factors that increase exposure to health-compromising conditions. Recommendations to improve consumer experiences were mapped to the CSDH framework for tackling social determinants of health inequities as policy directions on: (i) unequal consequences of illness (individual interaction); (ii) risks of exposure to health-damaging factors (community); (iii) exposures to health-damaging factors (public policies); and (iv) mitigating effects of socioeconomic and political stratification (environment). Results: Fifty-four studies were included. Māori consumer experiences mapped to social determinants of health inequities were most frequently related to direct interactions with health services and programs, particularly patient-clinician interactions (communication, relationships) and cultural competencies of clinicians and the system. Key recommendations by researchers mapped to potential strategies to address inequity were identified at all levels of the political, social and health system from individual interactions, community change, and broader public and system-level strategies. Recommendations were predominantly focused on actions to reduce risks of exposure to health-damaging factors including health literacy interventions, increased resources in cultural competencies and Māori capacity in health service development and workforce. Conclusions: Māori consumer experiences of health services and programs are an important informer of variables that impact health inequity. Strategies to tackle health inequities informed by Māori consumer experiences can be drawn from existing empirical research. Future qualitative exploration of how socioeconomic, political and public policies influence Māori consumer experiences of health services and programs could inform a broader range of structural policies to address health inequities.

Background Persistent and marked inequity is observed for Māori at all levels of health, [1] education (Ministry of Health, Ministry of Education: Māori participation and attainment in science subjects, unpublished) and justice [2] in Aotearoa New Zealand. Non-Māori have life expectancies approximately 7 years longer than Māori, attain higher educational achievement in secondary and tertiary education, and are incarcerated at markedly lower levels. In primary and secondary health care, non-Māori patients are prescribed more effective medications [3], are referred more often to specialist services [4] and experience higher quality hospital care [5]. Non-Māori patients experience persistently lower rates of preventable diseases that lead to avoidable hospitalisation and unmet need in primary care [6]. Māori experience inequitable access to health services throughout the life course leading to higher rates of disability and multiple morbidity [7]. Māori are more likely than non-Māori to cite cost as a barrier to accessing primary care. In addition, nationwide quality improvement programs in Aotearoa New Zealand worsen inequity by differentially improving access to services for non-Māori [8][9][10]. Patient-centred research can facilitate the understanding of consumer experiences, perceptions and expectations of health services to generate insights and knowledge that guide improvements in healthcare acceptability and quality [11]. In the last two decades, there has been an increase in qualitative research to explore patient viewpoints to inform public policy and align health service development with consumer preferences and expectations [12]. Despite this shift toward greater inclusion of patient voices in clinical health research, including with Māori consumers, health outcomes remain inequitable across numerous clinical settings in Aotearoa New Zealand and for indigenous and tribal peoples worldwide [13]. In addition to seeking patient perspectives, qualitative studies can offer critical insights into the ways that researchers view and conceptualise the patient experience and how those experiences are problematised as a basis for interventions to improve health outcomes [14,15]. This study aimed to explore how Māori consumer experiences of health services and programs in Aotearoa New Zealand are conceptualised within qualitative research, to characterise how recommended strategies to improve Māori consumer experiences can inform policy directions to address health inequities and to identify gaps in the existing evidence base. --- Methods We did a systematic review and evidence synthesis of qualitative studies reporting Māori consumer experiences of health services and programs in Aotearoa New Zealand. We used the theoretical framework of the World Health Organization (WHO) Commission of Social Determinants in Health (CSDH) to categorise the factors reported to be associated with Māori consumer experiences of health and to evaluate how recommended strategies arising from the findings might inform strategies to address health inequities [16]. The Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) framework was followed for this study [17]. --- Literature searching Electronic searches were conducted in AMED, CINAHL, EMBASE, MEDLINE, Google Scholar, PROQUEST, and PsycINFO for qualitative studies reporting Māori consumer experiences of health services and programs in Aotearoa New Zealand from each database inception up to week 2, February 2018. We used search terms using keywords relating to Māori (Māori, First nation, Oceanic ancestry, Native), and qualitative research (Content analysis, Descriptive, Discourse, Exploratory, Grounded theory, Interpretive, Interview, Mixed method, Multi method, Narrative, Phenomenology, Qualitative, Thematic, Theme) and experiences (Attitude, Belief, Experience, Perception, Perspective, Satisfaction, Value, View). Studies that included Māori participants but that did not provide separate data analysis for Māori and non-Māori participants were not eligible. --- Data extraction and quality assessment The following basic characteristics were extracted from each study: publication year, methods for ethnicity determination, number of Māori participants, gender, cohort characteristics, health setting, topic, study methodological framework, whether kaupapa Māori methodologies were used and funding source(s). The text of each paper including tables and figures was reviewed in full text by at least two of three authors (SCP, HG, SP) to extract the following from each study: stated purpose of research, determinants of Māori participant experiences, and research responses and recommendations arising from the findings. Two authors independently assessed the transparency of reporting using the Consolidated Criteria for Reporting Qualitative Research (COREQ), which assessed study methodological reporting of the research team, methodologies, context, analysis, and interpretation [18]. --- Data coding and analysis The extracted data underwent two cycles of coding by at least two of three authors (SCP, HG, SP). These authors (SCP and SP) have expertise in Māori health research or (HG) are training in Māori health research. Three authors who provided intellectual feedback on the coding also have expertise in Māori health research (TH, CL, LB). In the first coding cycle, descriptive coding was used to identify the basic topic for each passage of reported data in the results and discussion section of each included study [19]. In the second cycle of coding, the determinants of Māori consumer experiences of the health system (services and programs) were mapped against the World Health Organization Commission for Social Determinants of Health (CSDH) conceptual framework of the determinants, processes and pathways that generate health inequities [16]. The CSDH conceptual framework includes the socioeconomic and political context in which people live (governance, macroeconomic policies, social and public policies and culture and societal values), the socioeconomic positioning of people (social class, gender, racism, education, occupation and income) and the intermediary factors (material circumstances, behaviours and psychosocial factors) which, mediated through health services and programs, determine inequity in health and wellbeing. The actions recommended by researchers arising from the determinants of Māori consumer experiences were mapped against the CSDH framework for strategies tackling social determinants of health inequities. This framework describes a hierarchy of dimensions and directions for: 1) policies to reduce unequal consequences of illness in social, economic and health terms (individual interactions); 2) policies to reduce risk of exposure of disadvantaged people to health-damaging factors (community); 3) policies to reduce exposures of disadvantaged people to health-damaging factors (public policies); and 4) policies on stratification to reduce inequalities and mitigate effects of stratification (environment). --- Results Electronic searching yielded 4182 citations of which 293 were examined in full text (Fig. 1). Fifty-four qualitative studies were included [12,. The comprehensiveness of study reporting is shown in Additional file 1 and in the Additional file 2. Studies reported between 4 and 26 of the 32 Consolidated Criteria for Reporting Qualitative health Research (COREQ) criteria. Māori consumer experiences were reported within a range of health settings and programs including primary care, public health and screening initiatives, community health programs, disability and hospice services and hospital-based care (Table 1). The number of Māori participants in each study ranged between 4 and 130. Twenty-eight studies reported funding from government sources. Eleven studies reported kaupapa Māori (Māoriled) methodologies [12,24,35,39,56,59,61,[65][66][67]70]. In 24 studies, ethnicity was reported as self-identified by participants [26, 27, 31, 34, 35, 37, 40, 45, 47-50, 55, 57, 59, 61, 63, 65-70, 72]. In two studies, ethnicity was identified through name or records, [29,56]. Most (38 studies) studies aimed to evaluate consumer experiences and perceptions of healthcare and health service delivery. Fewer studies evaluated patient experiences as they related to healthcare implementation and policy (8 studies), [46, 52-54, 56, 67, 68, 70] cultural appropriateness of healthcare (6 studies) [39,43,47,50,66,69] or to identify the causes and impact of health inequality (1 study) [36]. --- … not data available or none reported Māori consumer experiences of health that were mapped to social determinants of health inequity were most frequently identified as direct interactions with the health system (Fig. 2). These included patient-clinician communication and relationships, clinician cultural competency, tikanga (cultural mores) in health services, the physical clinical environment, whānau (extended family) involvement in care, patient support, clinical respect for patient and clinician availability. Reported Māori consumer experiences mapped to intermediary factors that lead to differential exposures to healthdamaging factors included health beliefs, cultural (dis) connectedness, costs of clinical care and internalised blame. Māori consumer experiences in the available studies were less commonly mapped to socioeconomic positioning (previous health experiences, clinician ethnicity, racism, health literacy and socioeconomic factors) and the socioeconomic or political context (public health promotion and colonisation). Based on Māori consumer experiences, the most frequently recommended actions to improve Māori experiences of healthcare were aligned with reducing risk of exposure to health-damaging factors (such as integration of tikanga (cultural mores) in health services, health literacy interventions, increasing Māori workforce capacity and involvement in health service development, resources for cultural competency, accessibility of health services and clinician responsiveness to Māori consumers) (Fig. 3). Recommended actions to reduce the unequal consequences of illness in social, economic and health terms included culturally relevant interventions, support for whānau (extended family)-based care and involvement in the health system, holistic models of care and reflexive clinical practices. Strategies aimed at reducing exposures to health damaging factors included improved referral practices, reducing clinician bias, increased awareness of health determinants and provision of cultural competency frameworks and strategy. Proposed strategies aligned with mitigating the effects of socioeconomic and political stratification included funding of health services including increasing specialist services, socioeconomic policy actions and preventative health care and programs. Researchers also suggested mechanisms to monitor and follow-up on health equity based on Māori consumer experiences. These included data collection processes, information sharing and empirical health research (Fig. 3). --- Discussion This paper summarises the determinants of Māori consumer experiences in health services and programs reported in qualitative studies and the actions recommended by researchers based on their findings. The findings have been mapped to the CSDH frameworks of health inequities to synthesise a range of potential strategies that might Fig. 2 Reported Māori consumer experiences of Aotearoa/New Zealand health services and programs mapped to the Commission for Social Determinants of Health (CSDH) conceptual framework of health inequities [16] address Māori health inequities informed by consumer experiences. Based on qualitative data from several health settings, direct consumer interactions with the health system and programs are important informants of the determinants of health inequity in Aotearoa New Zealand, suggesting this as a priority area for quality improvement. Aspects of care that were particularly noted were patient-clinician relationships and communication, including clinician cultural competencies. Clinical services lacked alignment with tikanga (cultural protocols and processes) and involvement of the whānau in healthcare. Other intermediary factors that contributed to health inequity included costs of clinical care to consumers and internalised blame as a consequence of racism, leading to altered (reduced) care seeking actions. Systemic factors identified from exploration of Māori consumer experiences included socioeconomic and political factors such as colonisation, public health policies, institutional racism, power imbalances between clinicians and patients and health literacy. Mapping of the strategies that researchers recommended to improve Māori consumer experiences to the CSDH framework for tackling health inequities enabled the CDSH framework to be aligned to Māori patient, whānau and consumer perspectives of the health system. Most recommendations provided strategies to reduce the risks of exposures to health-damaging factors experienced by Māori as the direct consequences of colonisation and racism. These responses included expanded use of tikanga and culturally competent practice in health services, capacity-building to support Māori participation in the health workforce and health service development, and greater access for Māori to clinical services including health system responsiveness to Māori consumer expressed needs and expectations. Health system level strategies based on consumer perspectives included greater funding of health services, expanding specialist services for Māori and increasing preventative health care and programs. Policies to reduce the unequal consequences of illness that further drive structural inequity included the development of culturally relevant interventions and whānau (extended family) rather than individual-centred care. The actions identified by researchers that might reduce health inequities for Maori consumers in this synthesis are concordant with evidence within other national settings including Canada and Australia [73]. These include strengthening community-governed health services, addressing power imbalances during Indigenous patient interactions with health services through trust, reciprocity, and shared decision-making, as well as avoiding a deficit model of non-adherence by Indigenous patients as an explanation for health outcomes. Similarly, in a critical interpretive synthesis of healthcare in the United Kingdom among patients with socioeconomic disadvantage, equity of access was conceptualised as a complex interplay between social context and features of the health service Fig. 3 Researcher recommended actions to improve Māori experiences of Aotearoa/New Zealand health services and programs mapped to the Commission for Social Determinants of Health (CSDH) conceptual framework for tackling social determinants of health inequities [16] such as patient navigation and the permeability of health services to specific patient communities [74]. These findings are consistent with the present analysis that identified potential strategies to address inequities and improve services for Māori consumers informed by experiences include modifying referral structures, and increasing service and clinician accessibility and responsiveness. These findings suggest that, in addition to the role of qualitative research to evaluate individual and community-level Māori consumer experiences within specific health settings and encounters, there is an untapped potential for qualitative and participatory research with Māori consumers to inform the development and implementation of effective policies and interventions that reduce inequities and exposure to health damaging factors at a broader macro-level [75]. Aotearoa New Zealand has a governance system with the capacity to address health inequity as required by the Treaty of Waitangi. This system includes robust quantitative data collection and reporting on social determinants of health, legislative structures that enable intersectoral action on equity, a governmental framework linked to budget, and a strong public health system. While still relatively infrequent, qualitative research that is co-designed with Māori consumers has provided examples of how participatory research actions can inform system and policy-based change to address inequity. For example, research informed by Māori consumer and clinician experiences has led to consumer-designed health service improvements including increased specialist assessment and diagnostic services in rural Tai Tokerau/Northland [12] and a culturallyacceptable intervention to support safe bed-sharing (the wahakura sleeping pod), [21] that has subsequently been adopted as policy and evaluated in a randomised controlled trial [76,77]. Clinical quality improvement programs in Aotearoa New Zealand do not always improve health service experiences and outcomes for Māori and may exacerbate rather than address inequities [8][9][10]. Recent examples include inequities in childhood immunisations that were nearly eliminated in 2014 but have re-emerged through progressive loss of initial gains in immunisation rates among Māori children [7]. Similarly, progressive improvements in diabetes monitoring and kidney disease screening for non-Māori have not occurred for Māori patients. Knowledge of Māori consumer experiences of health care to inform understanding of structural determinants and intermediaries of health inequities may support healthcare quality improvements that sustainably reduce the unequal distribution of quality health care. Empirical analysis has demonstrated the necessity of critical reflections of power and institutional culture in the sustainable delivery of programs that are aimed to impact on health inequity [78,79]. The strengths of this paper include the a priori use of a conceptual framework that considers the structural determinants of health (CSDH), a broad literature search within multiple electronic databases and two levels of coding using established methodological processes. There are also limitations of this study that need to be considered when interpreting the findings. First, we may have not identified all the relevant qualitative studies available in the literature due to challenges in retrieval of qualitative research and a lack of searching of grey literature including governmental and non-governmental reports [80]. Second, we did not include qualitative studies exploring perspectives of health providers in the review which may have captured additional methodological approaches and theoretical frameworks in existing qualitative research of Māori consumer experiences. Third, the nature of qualitative research of patient experiences is frequently focused on the individual and their immediate family, and accordingly the type of study we evaluated would be most likely to examine the direct health consequences of unequal exposure to risk factors for disease and illness. --- Conclusions Māori consumer experiences of health services and programs are an important informer of variables that impact health inequity. Strategies to tackle health inequities informed by Māori consumer experiences can be drawn from existing empirical research. Future qualitative exploration of how socioeconomic, political and public policies influence Māori consumer experiences of health services and programs could inform a broader range of structural policies to address health inequities. --- Availability of data and materials The dataset generated and analysed during the current study is available in the Mendeley Data repository, https://doi.org/10.17632/wgmwjscsn9.1. --- Supplementary information Supplementary information accompanies this paper at https://doi.org/10. 1186/s12939-019-1057-4. Authors' contributions SCP conceived the study, screened the literature for eligible studies, extracted data, conducted the data coding and analysis, and drafted the manuscript. HG screened the literature for eligible studies, extracted data, conducted the data coding and analysis, and provided intellectual input into the manuscript. TH, CL, and LB were major contributors in writing the manuscript. SP conceived the study with SCP, conducted the data coding and analysis, and was a coequal contributor with SCP in writing the manuscript. All authors read and approved the final manuscript. --- Additional file Ethics approval and consent to participate Not applicable. The research is a meta-analysis of publicly available studies. --- Consent for publication Not applicable. --- Competing interests The authors declare they have no competing interests. --- Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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“Caught Between a Rock and a Hard Place”—Between Discourses of Empowerment and Solicitude: Danish Public Sector Service Professionals’ Discourses of Nonattendance

Non-attendance constitutes a profound challenge in public sector services targeting young adults with mental health difficulties. Therefore, researchers and practitioners are occupied with trying to resolve this. In order for clinicians to be aware of their own naturalised and perhaps inappropriate communicative practices, we investigated the established normative organisational logics behind explanations and strategies related to non-attendance. We performed a critical discourse analysis on material collected through participatory research throughout 2015. Three discourses were identified: solicitude, responsibility and youth discourse. Although the discourses were complex and entangled, they were used by all practitioners. Furthermore, some of the discourses, especially the responsibility and the solicitude discourses were inherently tension-filled, and practitioners experienced frustration in dealing with these tensions. The youth discourse can be understood as a coping mechanism to deal with these tensions because it distributes responsibility for non-attendance to general social and cultural processes.

Introduction Missed appointments and no-shows are a challenge to public service systems (J. A. DeFife, Conklin, Smith, & Poole, 2010;Pillay, Wassenaar, & Kramers, 2004), and in psychiatry, the rate of non-attendance i is double that of other specialties (Killaspy, Banerjee, King, & Lloyd, 2000;Stewart, 2013). Young people are especially vulnerable in regard to mental health services (Munford & Sanders, 2016), and due to a gap between child/adolescent and adult mental health services, many youth risk not getting the treatment they need in time or at all; only about half of children and adolescents with mental health difficulties receive treatment at all (Weitkamp, Klein, & Midgley, 2016). Furthermore, youth who do receive treatment have the highest risk of missing appointments (Chariatte, Michaud, Berchtold, Akre, & Suris, 2007). Missed appointments prevent people with mental health difficulties from getting professional help, increase risk of hospital admission (Chariatte et al., 2007), delay access for other patients (Kenwright & Marks, 2003) and increase the risk of suicide attempts (Pillay et al., 2004). Hence, non-attendance is not only a problem for service users, but it is also a problem in regard to inefficient use of resources as well as for staff morale (J. A. DeFife et al., 2010;Kenwright & Marks, 2003;Wiseman & McBride, 1998). Because of high levels of non-attendance throughout mental health services, there has been great attention in the literature on understanding factors contributing to service (dis)engagement and what might enhance attendance rates (Anderson et al., 2006;Block & Greeno, 2011;Jared A. DeFife, Smith, & Conklin, 2013;Edlund et al., 2002;Gibson, Cartwright, Kerrisk, Campbell, & Seymour, 2016;Henzen, Moeglin, Giannakopoulos, & Sentissi, 2016;Iachini, Hock, Thomas, & Clone, 2015;Munford & Sanders, 2016;Munson et al., 2016;Sheridan & McArdle, 2015;Thompson, Bender, Lantry, & Flynn, 2007). In two public service sectors in Denmark, the RENEW (Rehabilitation for Empowerment, Natural Supports, Education and Work) (Malloy, 2013) model was introduced to develop a targeted intervention to help young adults with mental health difficulties become more engaged in services as well as move closer toward attaining education. The initial focus of the project was not to investigate non-attendance, but to develop and adjust RENEW to the Danish setting through a participatory research approach. However, throughout 2015, it became clear that non-attendance was a prominent focus point in the public service sector, and hence, it was an inevitable topic in professionals' discussions as well as the occasional source of great frustration. There were many tape-recorded discussions about how RENEW could be qualified to try to reduce non-attendance; therefore, it made sense to investigate how this predominant focus on non-attendance has influenced professional's understanding of their work and of youth. In this article, we investigate professionals' discussions about non-attendance. By using discourse analysis, we will be able to better understand professional frustration by drawing attention to inherent and perhaps inappropriate practices which are based on naturalised and common-sense assumptions (Fairclough, 1992c, p. 90). Moreover, understanding discourses about non-attendance will help to reveal established normative organisational logics and identify ongoing or future cultural changes within the organisations (Jørgensen & Phillips, 2002). This will enable professionals to be critical towards their own, perhaps inappropriate practices. Crawford et al. has described how compassionate language seems to be reduced due to time pressure in an environment of process-focused as opposed to person-focused care (Crawford, Gilbert, Gilbert, Gale, & Harvey, 2013). Kenwright and Marks describe how non-attending patients are referred to as 'unmotivated' or 'unreliable' (Kenwright & Marks, 2003), which might have unfortunate consequences for patient-staff relations. Based on empirical data from the participatory work with the RENEW model in Denmark, the purpose of the article is to investigate common-sense assumptions and inherent organisational logics by identifying discourses in professionals' negotiations about youth's non-attendance. Furthermore, we will discuss how potential tensions between discourses can be understood in the context of a broader social context of public service sectors targeting youth with mental health difficulties. --- The present study This article is based on empirical data from a study with a participatory approach in which a researcher and professionals have been adjusting and further developing the RENEW model (Rehabilitation for Empowerment, Natural Supports, Education and Work) (Malloy, 2013). In Denmark, RENEW targets young adults aged 18-30 with mental health difficulties, and the project was implemented in two public health service sectors: out-patient treatment in mental health services in the Capital Region of Denmark, and in an occupational centre in the City of Copenhagen ii . Secondary mental health services are free once patients have been referred through their general practitioner, and patients have a right to get a psychiatric assessment within one month, and a right to receive treatment within one to two months, depending on the severity of the disease. Treatment in out-patient services for non-psychotic disorders is restricted through so-called 'packages' comprising a certain number of different services dependent on diagnosis, e.g. patients with anxiety disorder receive a standardised package of 15 hours of clinical treatment altogether (Danish Regions, 2014). Treatment is typically interdisciplinary and managed by a psychiatrist, a psychiatric nurse and/or a trained psychologist and, if needed, a social worker and a physiotherapist. There are different types of occupational centres in Denmark, with the purpose of getting citizens on public welfare services into either education or employment, depending on age. The centre in this study targets young adults on social welfare benefits aged between 18 and 30 years. Most young adults connected to the centre have mental or social difficulties, and some have psychiatric diagnoses. The centre's main purpose of getting youth into education is aligned with the political agenda in Denmark, where it is decided that minimum of 95% of a youth generation should complete a formal education after finishing compulsory school levels (Cederberg & Lingärde, 2008;Danish Ministry of Education, 2015). Once connected to the centre, it is obligatory to attend meetings, and if youth fail to appear, their social benefits are reduced dependent upon the number of missed appointments. RENEW was developed in an American setting, and therefore, the purpose of this project was to further develop it in collaboration with staff, in order for it to make sense in the two Danish public service organisations. In December 2014, professionals were trained to work with youth in accordance with the RENEW model, and throughout 2015, professionals and a researcher held regular meetings to discuss the content of the model and implementation challenges. Throughout this process, professionals worked with youth while also participating in developing and adjusting the model. Hence, they could use practical experiences in the development process and test the changes made along the way. When working with the model, the researcher introduced the common term 'youth' to describe the target group instead of public sector service conventionally used terms like 'patient' for psychiatry or 'citizen' for the occupational sector. This allowed professionals to speak a more common language. The term 'youth' will therefore also be preferred throughout the remainder of this article. --- Method Data collection Throughout the development process, the Michaela Hoej had offices both in the occupational centre and in the mental health clinic. Hence, she was part of the research field. In addition to her, five interdisciplinary professionals from the occupational centre and six from the mental health centre participated in the empirical project activities. The mental health services project team consisted of three nurses, one social worker, one psychologist and one psychiatrist, while the team in the occupational centre consisted of two nursing aids, one psychologist, one nurse and one team member with a Master's degree in social science iii . Recruitment for RENEW was voluntary in both the occupational centre and the mental health clinic, and professionals were informed of the research character of the project from the beginning. In the outpatient clinic, team members consisted of approximately 15 to 20 professionals, and 4 volunteered to work with RENEW, whereas in the occupational centre, recruitment took place through a listing of a vacant positions on the intranet, where all 100 staff members could apply; however selected staff members were encouraged to apply. Four people were chosen out of the applications received. The qualitative empirical data in this article were collected throughout 2015, see Table 1. Summaries as well as transcriptions were then read thoroughly through while simultaneously listening to recordings, and discussions surrounding absence, no-shows or non-attendance was coded as such in NVivo. "To achieve the fullest possible understanding of the material, a rough and exploratory thematic analysis on discussions about non-attendance was then made. --- Type of data Context This did not result in selections or exclusion of the material, but rather it ensured a preliminary overview. This preliminary analysis was then followed by a more thorough critical discourse analysis based on selected analytical tools from Norman Fairclough's framework (Fairclough, 1992c)." This will be further elaborated below. Data were collected and analysed in Danish, and the chosen excerpts for the article were then translated into English. The primary writer did the initial translation and this as well as original citations in Danish were presented to co-authors, so all translations could be discussed to reach a mutual decision on the best possible translation. --- Ethics The project was approved by The Danish Data Protection Agency (journal number 03610 and ID-number: RHP-2015-006). The Regional Committee on Research Ethics was also contacted for approval (Protocol number: H-7-2014-FSP15), but the project was not liable to notification, because no biological material was included in the research. Hence, no approval was necessary. Furthermore, the Danish National Board of Health was contacted (Case number 2014111813), but the project was not liable for notification here either. When observations and interviews were conducted, informed verbal consent was collected from both professionals and youth. Participation in the research was not a condition for working with RENEW, but all professionals agreed to participate anyway. We chose not to collect written consent for several reasons. Firstly, data collection was ongoing throughout 2015, and it seemed more appropriate to start every meeting and workshop with an oral reminder that the meeting was being recorded for research purposes than to collect written consent only once in the start-up phase of the project. Furthermore, oral consent seemed less formal, and the aim was to create a relaxing and informal atmosphere between the researcher and professionals. Whether to involve youth more in the development process was considered at the beginning of the project, but since this was a process lasting more than a year, which would be longer than some youth participated in RENEW, it was decided to primarily involve staff. Youth was still involved in the development of RENEW through focus groups. However, the empirical data from these are not used in this article, since the focus is on which discourses professionals use when discussing non-attendance. Assumptions, theoretical framework and analytical strategy As described above, discourse analysis can help shed light on inappropriate and unacknowledged organisational common-sense practices (Fairclough, 1992c;Jørgensen & Phillips, 2002), and this is what we wish to do in this article. We wish to further our understanding of inherent organisational logics by analysing discourses about nonattendance. We have identified discourses by using concepts from Fairclough's critical discourse analysis framework, because there is specific focus on linking the linguistic tradition to social practice, and by doing so, understanding microsocial as well as macrosocial processes (Fairclough, 1992c). Methodologically, this article has a social constructivist point of view, understanding reality as not in itself immediately accessible, but shaped and framed through discourses. The relationship between discourse and social practice is dialectical in the sense that society produces discourse and discourses also produce and reproduce society. Hence, discourse is a reflection of reality as well as a constructer of social identities, social relations, as well as knowledge and meaning structures (Fairclough, 1992c(Fairclough, , 2001a)). In our analysis, we have sought to investigate this dialectical relationship primarily through looking at the concept of intertextuality which comprises the fact that texts vi absorb and are created by drawing on fragments from earlier texts (Fairclough, 1992b(Fairclough, , 1992c)). Hence, texts constitute history and facilitate change by responding to, accentuating and reworking past texts. Therefore looking at intertextuality of a text can clarify earlier assumptions and provide insight into occurring changes. Intertextuality is a useful concept in analysing how concrete discursive practices can reflect wider macrosocial practices (Fairclough, 1995). As will be shown later in the article, in our analysis, we have utilised it to assist our understanding of how professionals' discourses about non-attendance reflect organisational logics. We have analysed intertextuality by identifying where the texts explicitly refer to an earlier text (manifest intertextuality) or where they draw on specific orders of discourses. An order of discourse is "the way in which diverse genres and discourses and styles are networked together. An order of discourse is a social structuring of semiotic difference in a particular social ordering of relationships amongst different ways of making meaning, i.e. different discourse and genres and styles." (Fairclough, 2001b, p. 2). Hence, orders of discourses can be understood to be the sum of different discursive types that exist within a given domain (Jørgensen & Phillips, 2002). Inspired by the critical discourse analysis, we have identified discourses by analysing the textual dimension descriptively. Focus has been placed on the linguistic characteristics of the text, such as vocabulary. Specifically, we examine the ambivalence vii in professionals' discourse representations viii to describe the entanglement and complexity of non-attendance, and we pay especial attention to whether they are sentimental or distant (Fairclough, 1992b) to analyse which discourses the chosen wordings might represent. We have also been particularly interested in presuppositions, which is the 'taken-forgrantedness' the text producer communicates as an already established fact (Fairclough, 1992b). Presuppositions are especially valuable in identifying inherent organisational logics in professionals' discourse representations. Finally, we have linked texts to context by examining the social practice (societal context) with focus on ideology and discursive battles. Fairclough argues that discourses can be understood to be ideological, since ideologies are 'built into various dimensions of the forms/meanings of discursive practices and [they] contribute to the production, reproduction or transformation of relations of domination." (Fairclough, 1992c, p. 87). The most efficient ideologies are embedded in discourses and become naturalised or common-sense. When this occurs, hegemony is achieved. Hegemony should not, however, be understood exclusively as a sign of dominance, but rather as a form of leadership in which negotiation and constructing alliances through arguments takes place (Fairclough, 1992a, p. 91ff). Therefore, some ideologies hold more power in practice, and understanding the discursive battles can help us understand the professionals' social practice. An example of this can be found in the introduction, where it is described how time pressure effects compassionate language in care (Crawford et al., 2013). Therefore, our focus has been to look for ideologies behind discourses and to determine whether discourses reveal common-sense practices in order to determine power balances. --- Analysis In the following analysis, we present discourse representations about non-attendance as well as described and observed explanations and strategies. The purpose is not to identify which particular explanations or strategies are used, but rather how they are represented discursively and what underlying assumptions they represent. We will commence by introducing the complexity of understanding non-attendance. Then, we will describe the discourses derived in our analysis. We will analyse how these discourses can be understood based on intertextuality, and the focus will be on wording, ambivalence and presupposition. We will then look at the social practice by discussing which orders the discourses are part of and how some orders of discourse might hold more power than others. Ambivalence in discourse representations due to entanglement and complexity of discourses This example shows the complexity by illustrating the ambivalence in the discourse representations: Looking at vocabulary, Professional 3 argues that youth do not attend because they are not able (line 11) to do so, due to their anxiety (line 9). She says that youth has problems, indicating that their mental health problems are the main reason for their not attending. Although in line 12-14, the second professional understands and expresses agreement, she, as does the first in line 20, still uses the word obliged in line 8. This presupposes that youth stay at home when they do not feel obliged to come. This presupposition is also visible in line 16, in which the third professional highlights that youth have said that they liked RENEW, which indicates that not liking RENEW would be enough to make them not attend. The concept of ambivalence, also described earlier, that appears in this dialogue was present throughout the data, and the ambivalence was not dependent on membership of professional group or on professional background. We will now describe the three discourses identified in our analysis: the responsibility discourse, the solicitude discourse and the youth culture discourse. As exemplified in the discussion above, the discourses are not delimited entities, but rather discourses appear as a mixture of explanations and strategies to deal with non-attendance. Each discourse offers a different perspective on the perception of youth as a result of which words are chosen in the particular discourse representation, and each discourse emanates one way of understanding the societal development, or one order of discourse. In the following section, we will analyse how these three discourses can be identified and discuss what orders of discourse they draw on. --- Solicitude discourse The solicitude discourse is constructed with many sentimental utterances, as Fairclough might label them (Fairclough, 1992b, p. 272), and discourse representations entail descriptions of the target group as vulnerable patients in need of help. For example, in the above discussion when Professional 3 focuses on problems and anxiety as primary explanations as to why youth do not attend, this is done though a solicitude discourse. This discourse is highly salient throughout the data, and in addition to anxiety, it draws on other symptom explanations, such as depression, personality disorders, etc. Hence, the primary focus is on mental illness and vulnerability, and typical examples of discourse representations explain how it can be difficult for youth to get out of their bed, that they are anxious to come or that it can be hard for youth to attend a new service at a new place and meet new people due to their illness. Youth are explicated as fragile and in need of care, and, naturally, the primary roles of professionals in these discourse representations are the roles of caregivers and helpers. Professionals describe how it can be necessary for them to aid in making it easier for youth to attend, including, for example a) helping with transportation (on occasion, young adults from the mental health centre would have the possibility of being picked up in a taxi); b) sending them a friendly reminder of the next session via text; or c) trying to be flexible with the planning of sessions, e.g. not scheduling sessions in the morning, when it might be difficult for youth to attend due to irregular sleeping patterns. Other explicated strategies include family engagement, e.g. arranging parents to drive youth to RENEW, or making sure their boyfriend encourages them to attend the appointment when the youth finds it difficult to leave home. We can attempt to understand this discourse through looking at intertextuality and relating to a wider social practice. By doing this, we can see that focusing on vulnerability and solicitude is related to a traditional understanding of the nursing role. According to the American Nursing Association nursing can be defined as: "the protection, promotion, and optimization of health and abilities, prevention of illness and injury, facilitation of healing, alleviation of suffering through the diagnosis and treatment of human response, and advocacy in the care of individuals, families, groups, communities, and populations" (The American Nursing Association, 2017). In patients' perspective organizational factors also effect quality of nursing (Irurita, 1999), and according to nurses themselves high quality nursing care entails interactions with family and should address 'all needs' of patients (Williams, 1998). The role of the nurse have been described like that of a mother, involving physical touch, and it is connected to being intimate, engaged and empathically caring (Helman, 2007, p. 162-163). Thus, the solicitude discourse draws on an order of discourse, which might be called the nursing order of discourse. It entails an understanding of the youth as ill, and it focuses on the illness as a breakdown in the body (Helman, 2007, p. 32). Therefore, in order to help the body and mind recover, professionals will need to assist with activities which would normally be categorised as 'private', e.g. help with sleeping, eating, grooming, etc. (Nettleton, 2013, p. 111). This type of work has also been characterised by Strauss et al. as sentimental work (Strauss, Fagerhaugh, Suczek, & Wiener, 1982), which further stipulates the sentimentality of the discourse representations within this order of discourse. --- Responsibility discourse The responsibility discourse is detectable when professionals accentuate that the youths themselves have a responsibility for attending services, and one strategy to try to make youth feel more responsible for attending is trying to create a sense of obligation. This strategy is represented in the positions taken by the two professionals in the discourse representation above, in which they focus on the importance of making youth feel obligated to come. The responsibility discourse can also be seen in the following discourse representation from a dialogue meeting in which a social worker from mental health services, talks about nonattendance with a trained nursing aid from the occupational service. underlines youth agency and the fact that professionals can only do so much to try to make them attend. Therefore, trying to make youth attend becomes a negotiation process. This is also detectable in lines 3-4 where business-inspired linguistics are used; professionals have to do what they can to sell the service and make it interesting. This wording highlights the fact that negotiating the terms of attending is a bilateral process in which the youth is the consumer of the service and the professionals are the salespeople. Youths, therefore, have to take responsibility for participating in this negotiation. In this discourse representation, the focus is not on what Fairclough describes as sentimentalities, such as illness or problems, but rather, more distantly or prosaically on negotiating terms and making youths take responsibility. Other negotiation strategies employed in the field to deal with non-attendance are outlined at the beginning of the RENEW process: using a RENEW contract, which is signed by both the youth and the facilitator, or explicating expectations that youth attend and, if not able to do so, at least give notice that they are not attending. Professionals also frequently discuss youth motivation, e.g. how can professionals work on making youth reflect on reasons for participating or help them see their own progress since starting. When youths are the ones who are responsible for coming, they must obviously be motivated to come; hence, focusing on motivation also speaks into a responsibility framework. This discourse therefore places a great amount of responsibility on youth, making it not only their responsibility to attend, but also their responsibility to make the most of their own RENEW process. Placing responsibility on service-users is recognised as a general developmental tendency within the professional-patient relationship (Nettleton, 2013, p. 145), and it is part of a development within healthcare where prevention and health promotion are becoming increasingly important (Nettleton, 2013, p. 230ff). With this development, focus changes from hospitals and patients to people and their everyday lives. This results in focusing more on what measures, both preventative and curative, that individuals need to take themselves to live healthier lives. Therefore, strategies that attempt to enhance a sense of empowerment -encouraging decision-making skills and facilitating action -become increasingly important for professionals. As the responsibility discourse can be seen as part for a more general developmental tendency, we argue that this discourse is constructed through what we might call an empowerment order of discourse (Nettleton, 2013, p. 232). Focusing on empowerment might also have a 'flipside', however, when individuals are not able to take on this responsibility. This will be discussed further in the section The empowerment order of discourse holds more power than the nursing order of discourse. --- Youth discourse The final discourse we have identified is the youth discourse. Interestingly, here the professional focuses on age as an explanation of lack of focus rather than, for example, illness. The discourse representation makes a presupposed connection between age and ability to focus and assumes that youths are not able to handle too many things at once. The wording 'youth' about the participants in RENEW is also explicated frequently in the data, and as opposed to e.g. 'patients', 'citizens', 'clients' or 'students', this draws the attention toward age and the generation as a whole. Professionals adapted this term from the participating researcher, because she used this term about the target group in trying to speak a common language between professionals in the two sectors. Normally, though, professionals in psychiatry would use the term patients (which is suited to the solicitude discourse), whereas professionals in the occupational centre would frequently refer to them as course participants xi . Thereby, the researcher played a central role, not only in the analysis, but also as a co-creator in regard to focusing on youth. In the following inquiry, the youth discourse is also represented. The discourse representation is from a dialogue meeting with professionals from both the occupational and mental health sector discussing how to deal with non-attendance. In this discussion a mental health nurse, expresses a wish to better understand the youths' generation to be able to come up with new strategies: Though she is educated and employed as a nurse in a psychiatric context that strongly accentuates solicitude and care, in the above discourse representation, Professional 6 still seeks more knowledge about youth nowadays and the culture (lines 7-8) as opposed to mental illnesses. In the above discussion, manifest intertextuality can also be identified; The professional explicitly refers to both an unnamed professor and a Noemi (Katznelson), who is a Danish professor researching youth culture and how to understand youth. Hence, in this discourse, the target group is perceived as a generation of youth with certain characteristics, which professionals need to be able to understand in order to be able to do their job, and nonattendance is described as a generation trait rather than a vulnerability. P6: "What I'm The youth discourse draws on what we could call a youth culture order of discourse. This order of discourse is present in society in regard to how we understand youth culture as more disengaged and liberated, or as Anthony Giddens describes it, we are increasingly free to choose what we want to do and who we want to be (Giddens, 1991). Youths are described as the ''me, me, me' generation' who, compared to earlier generations, have a reduced sense of empathy and show little consideration for others (Karkov, 2012;Konrath, O'Brien, & Hsing, 2011).Youths are also described as demanding, as having a hard time concentrating and finishing things, and even as justifying their choice (and right) to live on social benefits (Pultz & Mørch, 2015). In Denmark, the term zapper-culture is frequently used to describe youth as unfocused and moving quickly from one thing to another, and this term also appeared more than once in data. A similar English term NEET (Not in Education, Employment or Training) was first used to describe needs of 16-18 year olds not eligible for benefits, but later, the meaning has expanded both in age range and due to the fact that it is generally used to describe unemployed young people (Hutchinson & Kettlewell, 2015). With the expansion, certain characteristics have also been attached to NEET, e.g. low engagement and disruptive behaviour. This order of discourse is present in public spheres, but has also found its way into the psychiatric and occupational sectors according to this empirical data. However, in the above discourse representation, the youth discourse is not the only discourse that can be detected. The ambivalence described earlier can also be found. In line 9, the professional describes how she sometimes wishes youths would pull themselves together. This wording represents the responsibility discourse, in which youths actively decide not to show up, and if so, it is because they do not wish to participate. Furthermore, the solicitude discourse is represented in lines 14-15, in which the professional expresses that she feels she sometimes needs to get a little perspective to understand what youth are faced with and what they bring with them. This presupposes youth being faced with difficulties, e.g. symptoms, bringing along some sort of difficult baggage that needs to be taken into consideration when dealing with them. --- Discussion We will now discuss the above findings by looking first at how the discourses are interrelated, with a focus on the tensions and similarities between them. We will then connect them to social practice by looking at inherent organisational logic and by analysing discursive battles between the different discourses. Furthermore, we will discuss how tensions between discourses and inherent logic leads to frustration for professionals, and how the youth discourse can be understood as a venting mechanism to cope with this frustration. To underline our analytical points further, data will also be introduced in this section. --- Discourse interrelation: tensions and similarities Looking at social practices, discourses about non-attendance are ambivalent, interwoven, tension-filled at times and even contradictory. The solicitude discourse and the responsibility discourse are, for example, inherently tensionfilled. The responsibility discourse emanates from an empowerment order of discourse that places agency and accountability on youths, whereas the nursing order of discourse places agency and responsibility on the professionals. Contrarily, the youth culture and the responsibility discourse have similarities, and they even coincide with regard to some of the strategies proposed to reduce non-attendance. For example, giving youths structuring tools, such as week or day planners, helping them to manage their time more constructively or praising them for regular attendance. Professionals also discussed the possibility of using 'time-outs' from the service, meaning youths should be banned for a period if they failed to give notice when not attending (this was never effectuated, though). More 'punishment' style strategies included different forms of sanctioning, e.g. (for the municipal part of RENEW) reducing youth social benefits if they neglected to attend without cancelling. A different 'punishment' style strategy discussed was saying names of non-attendees out loud in the group (which professionals knew youth would not like) or telephoning them. Interestingly, however, telephoning youth was explicated as both a punishment for not attending and a strategy to get them to come on other occasions. Hence, telephoning youth was both understood to be caring and punishing, dependent on context. Therefore, telephoning as a strategy is not immediately possible to ascribe to one discourse rather than another. The empowerment order of discourse holds more power than the nursing order of discourse So, how can we understand the interrelated and complex discourses and the ambivalent discourse representations? To answer this question, Fairclough suggests analysing discursive battles and power relations by looking further at inherent organisational logic and social practices. We claim that the empowerment order of discourse holds more power than e.g. the nursing order of discourse and build on this with two arguments: 1) As described above, the solicitude discourse is related to a nursing order of discourse, and the nursing order of discourse is an established discourse within healthcare systems. However emotional labour and nursing tasks are carried out by those in lower positions in the medical hierarchy (Helman, 2007, p. 94-95;Nettleton, 2013, p. 142-143), which means that not much power is associated with this discourse. 2) The empowerment order of discourse can be understood in the light of the governance regime, New Public Management (NPM), used for decades in public service systems. The empowerment order of discourse builds on the idea that individuals can and should take responsibility for themselves and their own lives. Working on making youth take responsibility then, in essence, is an indirect form of governing, since the purpose is for youth to self-regulate, or conduct their own conduct, rather than trying to manage them through authoritarian or disciplinary actions (Dean, 1999). Since empowerment can be understood as a strategy for governing individuals with the aim of reducing non-attendance, it can be understood in the light of NPM. NPM has been widely used to manage health systems through strategies such as decentralisation, visible control systems, goal setting through means of quantitative indicators of success, performance measurements and trying to raise efficiency levels by 'doing more with less' (Hood, 1991). One strategy to raise efficiency in an organisation can be to raise levels of empowerment among workers (Argyris, 1998;Kaymakçı & Babacan, 2013). Similarly, in this project, one strategy to raise efficiency is empowering youth through increasing their sense of responsibility. Other strategies include registering attendance and formalising procedures through a LEAN xii -regime (Lawal et al., 2014), e.g. implementing an 'attendance-sheet' to be filled out by youths in order to contain possible future attendance challenges. These strategies all contribute to raising efficiency through reducing non-attendance, and they also match NPM strategies. Since the empowerment order of discourse can be understood in an NPM perspective, it becomes evident that this order of discourse carries more power than does the nursing order of discourse. The empowerment order of discourse reflects a governing style with great political and managerial support, whereas the nursing order of discourse, though persistent in public service sectors, is less influential. Since the empowerment order of discourse is more powerful than the nursing order of discourse, a related and highly relevant discussion becomes about how the empowerment order of discourse might influence social practice: Though empowerment in the above-described governing understanding might seem somewhat calculated, it is clear from the discourse representations in this material that professionals' aspirations to help youths take responsibility and become more empowered comes from a place of care. However, the question is: is it possible to 'give' someone empowerment? Yeich and Levine argue that it is not: "Empowerment seems to be a process that one must do for oneself -not something that someone can do for or to another" (Yeich & Levine, 1992). Furthermore, if empowerment is to be understood as an individual process, there will be individuals who cannot live up to this and therefore do not become empowered or able to take on this responsibility. This group therefore risks further marginalisation as a result of the empowerment order of discourse. --- Professional frustration It has been established that the empowerment order of discourse holds more power than the nursing order of discourse, and that there is a predominant organisational focus on raising efficiency. The tensions between the two discourses and the organisational focus on efficiency also cause frustration and exhaustion among professionals because they perceive it as a pressure: P6: "We feel a pressure when youth don't show up. We don't have enough confrontation hours with youth, and then we feel pressured to come up with solutions to solve this problem. (…) It's a defence against system pressure, right." In the discourse representation, the professional expresses how they feel obliged to act, but at the same time, they lack meaningful and efficient options available for action. Furthermore, professionals also express the feeling of being 'caught between a rock and a hard place' (direct quotation). In the organisations, there is, as described, a profound focus on attendance, and professionals explicate how it would be nice to sometimes focus on different aspects in their work. As expressed in the above quote, professionals feel pressured and caught in the middle, and they express, how they feel that many of the strategies available to deal with non-attendance seems inappropriate and lacking effect. For example, at one methodological meeting, Barbara explained that management assigned her the task of trying to get her colleagues to integrate an exercise focusing on reducing non-attendance in their youth group work. She therefore presented the idea of integrating the exercise in the youth group to her colleagues. However, in a discussion about whether to use it, it became evident that Barbara herself did not find the exercise valuable and that she would have found other initiatives more helpful, e.g. installing a system with automatic text-message reminders to youth before sessions. Hence, professionals feel that some tools introduced by the organisation to try to reduce nonattendance are inappropriate and add pressure to both them and the youths; e.g. the above exercise or registration of non-attendance that might lead to a reduction in social benefits. Furthermore, they do not believe these tools will work in practice. At the same time, they feel that meaningful tools, e.g. a text messaging system, might actually work, but that the organisation does not acknowledge these tools or their potential benefits. This underlines the tension between the nursing order of discourse and the empowerment order of discourse, which leads to great frustration for professionals. --- A venting mechanism In this section, we will answer the following question: How does the youth culture order of --- Implications for practice We have described how the inherent tensions between the empowerment and the nursing order of discourse might result in professional frustrations leading to integration of the youth culture order of discourse in practice as a coping mechanism. Therefore, one important implication for practitioners is being aware of how focusing on youth responsibility for attending is part of an empowerment order of discourse, which can be understood as being connected to NPM. This is especially important in light of the newest literature on the ineffectiveness of NPM (Hood & Dixon, 2015). Furthermore, the professionals' experiences of pressure due to organisational attempts to streamline health care services are also described elsewhere (Allen, 2015;Martin, Armstrong, Aveling, Herbert, & Dixon-Woods, 2015). Therefore, this article adds to the existing discussion dealing with how health care professionalism might be challenged by management initiatives focusing on optimal utilization of services. A different but equally important practical implication is the risk of further marginalisation of the most vulnerable youth group when choosing an empowerment-based approach in trying to reduce non-attendance. Finally, this article calls for reflections on the implications of the use of the youth culture order of discourse as a coping mechanism for professionals. By introducing more general cultural and social explanatory processes for youth non-attendance, this also alleviates professionals of their responsibility to deal with the issue. Professionals and policy-makers in countries such as Denmark, that pride themselves on having strong social safety net in the form of social welfare systems for the most vulnerable groups, must ask themselves if this would be a desirable outcome If not, we need to assist professionals in dealing with the frustration they experience due to the tensions between the empowerment and nursing orders of discourse -perhaps simply by acknowledging them and reflecting on them collectively. representations mutually afterwards. It is most likely unavoidable that modest nuances of meaning might be perceived slightly different. However, we argue that the important meaning structures are preserved because of a rigorous translation process. Furthermore, to ensure transferability, we chose to describe original Danish meanings of words in the text and in notes, when translations were debated between authors. The critical discourse analysis was chosen for two reasons. The first reason is that we have not been able to find critical studies on discourses of non-attendance. The literature regarding non-attendance is action-oriented and deals with prevalence, as well as reasons and strategies for professionals. However, we strongly advocate the importance of knowing the contingencies of having a profound focus on non-attendance, which is the reason why this approach was chosen. A second reason was to try to create some analytical distance, since the primary author was part of the field of investigation and development process. For example, as earlier described, it was discovered in the analytical phase that the primary author might have contributed to a particular focus on youth. Hence, it was necessary to try to create both physical and analytical distance from the object of investigation. Fairclough argues that discourses constitute the social organisation of institutions, reflecting (and shaping) the norms and conventions embedded in them (Fairclough, 1992c). In the occupational sector, a predominant control-mechanism is reducing the social benefits for youths if they do not live up to their responsibilities (e.g. coming to services), and in the mental health sector, the overall aim is to heal people. Therefore, we might have expected that the professionals from the occupational sector would have been more inclined to use the responsibility discourse and that professionals from the mental health sector would have been more inclined to use the solicitude discourse. However, as described earlier, we did not see any clear distinctions between how discourses were used in the two areas. We have identified two possible explanations for this: 1) The professionals in the occupational sector were a selected, and perhaps not representative, group of occupational professionals, who might have been more inclined to use the solicitude discourse in their discourse representations than their coworkers. They did after all volunteer to participate in a project working with youths in cooperation with mental health professionals, and some were even trained health professionals who had earlier worked in mental health settings. These combined factors will most likely have influenced their perspective. 2) It could also be, however, that both empirical settings were part of the same public service sector, in which discourses were more influenced by the pressure of implemented performance measurements inspired by NPM (e.g. registering attendance), than they were by the overall organisational aims. Whether both, none or only one explanation applies, this will be worth investigating in similar public sector services. In the Introduction, we described how patients are described by Kenwright and Marks to be 'unreliable' and 'unmotivated' (2003). This might be a different example of a distancing process taking place in discourses about non-attendance. Therefore, it might be relevant to investigate whether this practice of placing responsibility for nonattendance in social and cultural processes takes place in other contexts than public social services targeting youth with mental health vulnerabilities, and, if so, what discourses might replace the youth discourse. --- Concluding comments In this article, we have investigated the complexity of understanding non-attendance in services provided for young adults with mental health difficulties. We uncovered three discourses used when discussing non-attendance: a solicitude discourse, which was based on understanding, with a focus on caring and providing the necessary help to assist what is believed to be a vulnerable target group in attending a needed service; a discourse drawing on ideas from NPW, in which negotiation of terms for attending is the focus, and the target group is primarily responsible for their own process; and finally, a discourse drawing on the understanding of the youth generation as disengaged, demanding and with low engagement as an explanation for their lack of attendance. We described how these discourses are often used simultaneously when discussing nonattendance, although there are inherent tensions between them. It is, for instance, contradictory to both provide unconditional assistance to aid youths in attending while also expecting youths to take responsibility for coming themselves. The tensions between discourses create frustration for professionals because they feel caught in what they feel is an inextricable situation. They experience pressure to act in accordance with the NPM understanding while also attending to their role as an empathetic and understanding caregiver. In order to cope with this situation, professionals search for new explanations that provide a strategy to place responsibility for dealing with youth non-attendance elsewhere, such as on societal and cultural processes. Explaining and understanding non-attendance through discourses from spheres which are normally not considered part of the mental health public service sectors might, however, have unforeseen consequences. Discourse representations regarding non-attendance in public mental health services that entail certain generationdependent presuppositions about youth might construct a different framework for the work. For instance, attributing the characteristics of the youth generation to the individual youth in the service takes away responsibility from professionals to deal with non-attendance, while also constructing new explanatory models for understanding youth with mental health difficulties. --- Notes i Consensus about the terminology on patients not attending services is not established in the literature. In this article, we have chosen the terminology 'non-attendance', unless referring to literature using a different terminology. ii Mental health difficulties constituted non-psychotic diagnoses, such as depression, personality disorders, anxiety and stress in mental health services, but young adults attached to the occupational service constituted a broader mental health profile, ranging from people in treatment for psychotic as well as non-psychotic disorders to people without diagnoses. iii The professional with a master's degree in social science did not participate in the workshops, because she joined the RENEW team in September 2015. She did, however, participate in methodological meetings. iv Furthermore a student assistant participated at occasions to help with practicalities such as video recordings etc. v There was one meeting which was not audio recorded, but detailed written minutes of this meeting were taken vi Text is to be understood in a broad sense, including both written and spoken language as well as photos and non-spoken language (Fairclough, 1995) vii Fairclough on ambivalance:'Intertextuality is the source of much of the ambivalence of texts. If the surface of a text may be multiply determined by the various other texts that go into its composition, then elements of that textual surface may not be clearly or unambiguously placed in relation to the text's intertextual network, and their meaning may be ambivalent-different meanings may coexist, and it may not be possible to determine "the" meaning.' (Fairclough, 1992b) viii Instead of the term quotation, the term discourse representation is used when describing a text because it accentuates that particular words are chosen as opposed to other words, and hence, that the words, tone, etc. is a (more or less) conscious choice (Fairclough, 1992b). ix All names in this article have been changed to protect informants' anonymity. x A youth group where youth meet to discuss their RENEW process and share experiences is part of the RENEW process in Denmark. xi The target group was actually 'kursist' in Danish, which directly translates to participant in course. xii There are different definitions of LEAN, but generally LEAN is described as a set of tools and techniques for improving practice through eliminating waste and adding value (Poksinska, 2010). --- 2017 --- Document Version Early version, also known as pre-print --- Data The empirical material generated in this project will not be publicly available due to the rules of the Danish Data Protection Agency. It will, however, be available from the corresponding author, after publication, upon reasonable request and following a signed confidentiality agreement with the Danish Data Protection Agency in the Capital Region of Denmark. --- discourse fit into the order of discourse puzzle? The tensions between the responsibility and the solicitude discourse lead to great amounts of frustration among professionals because they are the ones expected to act in accordance with both discourses (and it is debateable whether this is possible at all), while at the same time reducing non-attendance. Therefore, there is an inherent risk that professionals will be criticised for not fulfilling their duties to reduce non-attendance while also caring for the target group. Hence, professionals, being placed in this inextricable situation, seek new and different ways to understand non-attendance through a distinct and more general youth culture perspective, as exemplified by the request for more knowledge about youth culture. When professionals relate non-attendance to the youth generation and the youth culture, nonattendance is interpreted as a result of more general cultural and societal processes. Therefore, in this order of discourse, the problem of non-attendance is a general cultural trait, which must be handled at a general level, rather than trying to change the behaviour of the individual youth. Therefore, responsibility for reducing non-attendance becomes detached from both professionals and the individual youths. Hence, the youth discourse can be understood as a coping mechanism by which professionals allocate the responsibility for high rates of non-attendance to larger cultural and social processes. Furthermore, this framing entails a distancing of oneself from youth, since the problem of non-attendance is no longer related to the individual youth sitting in front of the professional, but rather the youth generation as a whole. This can be related to our earlier description of Crawford et al.'s conclusion that time pressure and an environment of processfocused care seem to reduce compassionate language (Crawford et al., 2013). Using less compassionate language due to time pressure and process-focused environments can be interpreted as a coping strategy as well, and it might be an expression of the same distancing process we have identified in our material regarding youth discourse. --- Limitations and recommendations for future research A majority of qualitative research uses interview data, but in this article, we chose to use empirical materials from 'real-life' situations. Hence, we did not ask professionals to directly reflect and comment on non-attendance in an interview, but our empirical material on nonattendance comes from professionals' naturally occurring discussions on how RENEW could most appropriately be adjusted to a different context. We argue that this is a methodological strength, since the material then represents the professionals' discourse representations from actual situations, rather than 'artificial' interview situations, in which they were merely asked to describe or comment on these situations (Silverman, 1993). Furthermore, in interview situations, interviews might also be affected by how the interviewee and interviewer perceive each other and the situation (Silverman, 1993). By using 'real-life' material, we believe that the material is less 'edited' or 'processed' by the individual professional and that the language in our discourse representations is a representation of how professionals would speak in natural settings. We chose to do a critical discourse analysis. This approach is very extensive, and therefore, we singled out specific analytical tools. It might be argued that we have neglected to use key concepts, e.g. consummation of the text. This would have entailed a more thorough analysis of how the receiver of the text employs earlier discourses in understanding and interpreting the text (Jørgensen & Phillips, 2002).We argue, however, that it would not be possible to do a thorough analysis of every concept from Fairclough's terminology in one article. Hence, this can potentially be investigated elsewhere. Nuances in language might be lost in translation processes, and this is obviously important when analysing texts discursively. Therefore data was collected in Danish in order for participants to be able to use the mother-tongue when discussing non-attendance. Furthermore we chose to do the analysis in Danish, and then translate the selected discourse --- Declaration of conflicts of interest The Authors declare that they have no conflicts of interest.

42fe0238a18bcd0f1765d77a5dd3c6d49689219a

Has working-age morbidity been declining? Changes over time in survey measures of general health, chronic diseases, symptoms and biomarkers in England 1994–2014

BB. Has working-age morbidity been declining? Changes over time in survey measures of general health, chronic diseases, symptoms and biomarkers in

IntrODuCtIOn As life expectancy has increased in high-income countries, there has been a global debate about whether additional years of life are free from ill-health/disability. It is now largely accepted that old-age disability has declined in the USA (although varying by age/method), 1 2 although chronic illness increased, 3 and the picture beyond the USA is more mixed. [4][5][6] Yet, this research agenda has not been matched by similar attention to changes over time in morbidity in the working-age population. In the absence of direct evidence, policy-makers have often made claims based on self-reports of general health [6][7][8] which we know are unreliable. 9 10 The lack of evidence is even more problematic within social security, where many policy-makers have assumed that working-age morbidity must have improved in recent decades given improvements in mortality (despite the potential for declining mortality to coexist with rising morbidity) 6 -and that therefore high/rising levels of claims are not 'genuine'. 11 12 Almost the only direct evidence on changes over time in working-age morbidity in highincome countries comes from the USA. Contrary to policy-maker expectations, these studies have generally found deteriorating Open access morbidity since the mid-1990s, particularly activities of daily living and physical functioning. [13][14][15][16] Other studies have focused on the older working-age population with similar results. 2 17 Again, not all measures show deteriorations, and not all studies come to identical conclusions, 18 but there is little sign of any improvement in morbidity among working-age Americans-despite a 23% fall in working-age mortality 1993-2013 (online supplementary appendix 1). Outside of the USA, there is a paucity of evidence, but from the limited evidence that exists, there is again little sign of improving morbidity. [19][20][21][22] This study therefore asks: is there empirical support for the hypothesis that working-age morbidity in England has declined? (H 1 ). Or does the evidence support alternative hypotheses of stable (H2) or even declining (H3) morbidity? We answer this using the Health Survey for England (HSE), a high-quality Government survey with a combined sample of 140 000 individuals. We examine 39 specific aspects of morbidity rather than reducing morbidity to a single measure, partly because these produce more reliable trends, and partly to capture the multidimensional nature of morbidity. 23 However, we conclude by examining the broad picture of morbidity change, and how far this supports the competing hypotheses. This analysis makes two contributions. First, we provide one of the few systematic analyses of changes over time in working-age morbidity in any high-income country outside the USA. Second, we supplement self-report measures with 10 'biomarkers' which are particularly valuable for showing genuine changes over time (rather than merely changes in how people describe their health), but which have rarely been examined alongside self-reported working-age morbidity trends (Martin et al 24 being an exception). --- Data and methods This section follows the Strengthening the Reporting of Observational Studies in Epidemiology cross sectional reporting guidelines. 25 Data source Robust evidence of change over time requires consistently collected, high-quality data. We use the HSE, an annual government-sponsored cross-sectional survey of 3000-11 000 adults with no proxy responses. A particular advantage is that the interview is followed by a nurse visit which in selected years also includes a blood sample. Nevertheless, there are challenges in analysing change in HSE: ► First, HSE was run by the Government Office of Population Censuses and Surveys in 1991-93, before changing to NatCen in 1994. We focus on 1994-2014 given evidence of a discontinuity at this point. ► Second, topic coverage of HSE varies year-to-year, accompanied by changes in question wording/ filtering. Based on a systematic search of HSE questions, we have included every morbidity measure that is comparable over a significant duration. Even for measures that have been previously been analysed (eg, body mass index), 48 this new analysis uncovered further discontinuities (online supplementary appendices 2 and 3). ► Third, HSE excludes those in communal establishments. While a smaller problem for the working-age population than older ages, 2 we minimise the impact of rising university attendance by focusing on those aged 25+ (online supplementary appendix 3). The upper limit of the working-age population is set to 59 (women) and 64 (men) to match state pension ages at the start of the period. ► Fourth, HSE supplies non-response weights from 2003. However, there had been a substantial decline in response rates prior to the introduction of weights, particularly for blood samples (from 53.3% 1994 to 39.9% 2003; online supplementary appendix 3). We therefore reduce non-response biases by creating new non-response weights, described in online supplementary appendix 3. The resulting sample sizes for the various stages of data collection are shown in online supplementary appendix 3. Our dataset substantially extends an existing HSE time-series dataset (UK Data Archive SN7025); the code enabling other researchers to assemble this extended time-series dataset are freely available. 49 --- Patient involvement As this is a health monitoring study using secondary data, patients were not directly involved. However, from previous discussions we are aware that the study will be of interest to patient/disability advocacy groups, who will receive jargon-free summaries of the research. --- Measures We cannot interpret changes over time correctly without understanding different ways of operationalising 'morbidity'. 1 General health/disability measures-for example, 'How is your health in general?'-are a simple way of measuring morbidity with a single indicator, and clearly do capture something meaningful. 50 However, their generality means that despite consistent question wording, different people may interpret questions or response options differently (eg, what 'good' health refers to). 51 p218-24 This can even occur within individuals, if they change their internal standards of measurement over time (contributing to 'response shift'). 52 Numerous causal factors contribute to variable comprehension/ reporting, ranging from the experience of ill-health itself 52 to non-health factors such as social security incentives, 53 gendered-related and age-related expectations, and medicalisation. 54 These inconsistencies mean that general health/ disability measures are inadequate for answering our question: trends in such measures can differ wildly between different surveys covering nominally the same concept and population, for example, for disability in England 9 or self-rated health in the USA. 10 --- Open access general health' at the same time as activity limitations have fallen (changes over time in seven general HSE health/ disability measures are available in online supplementary appendix 4). Moreover, single indicator measures are potentially misleading in that they gloss over the multidimensional nature of morbidity. 1 To robustly answer our research question, we must instead focus on more specific morbidity measures that capture multiple aspects of morbidity. Our systematic search found 39 such measures that are comparable over time: these are summarised in table 1, with further details in online supplementary appendix 5. (A further 29 measures are also included in online supplementary appendix 6; this includes eight sub-components of measures in the main text, 16 reports of ever having a condition even if this not recent, and five other categories of longstanding illness (LSI).) These specific morbidity measures can be grouped into three types which have different strengths and weaknesses with respect to our question: 1. Medical labels: some measures are based on medical labels, either diagnosed chronic diseases or self-reported types of LSI. (Those reporting a LSI were asked, 'what is the matter with you?'; up to six responses were then coded by the interviewer based on the International Classification of Diseases (ICD)). These are imperfect measures of morbidity 55 as they partly reflect healthcare systems and medicalisation more broadly, both of which change over time. Nevertheless, they are an important element of morbidity as they have real consequences via increasing awareness/labelling of people's experiences. 2. Symptom-based: some measures are based on self-reports of ill-health symptoms or specific domains of activity limitations. These measures are either single items (eg, pain, anxiety/depression) or validated symptom scales (eg, the Rose angina scale, 56 57 General Health Questionnaire (GHQ) psychiatric distress). 58 The more specific and concrete nature of these measures prima facie makes them more likely to be interpreted consistently over time than medical labels and general measures. Others have reached a similar conclusion for comparisons across place, 55 particularly for disability measurement, 59 60 where the Washington Group on Disability Statistics-a UN agency founded in 2001have brokered a consensus that cross-country disability comparisons should be based on multiple measures of specific activity limitations. 61 62 We should nevertheless note that there is no guarantee that a given symptom/ impairment-based question will be interpreted identically over time. 63 64 3. Biomarkers-that is, objective measures of biological or physiological measures-have considerable strengths in analysing change, as they largely avoiding reporting biases that are likely to vary between socioeconomic groups and over time. 65 They do this at the price of an indirect and sometimes still-debated relationship to morbidity (see online supplementary appendix 5), and do not cover several important morbidity domains (eg, we lack good biomarkers for mental distress, pain and fatigue). These three types of measures are therefore complementary in understanding changing morbidity: biomarkers are least likely to be affected by changing respondent interpretations over time, but do not capture morbidity well; symptom-based measures capture morbidity well and are reasonably (if still imperfectly) reliable; and label-based measures are flawed in capturing symptoms/ limitations but do enable us to capture whether people consider themselves to have a medical condition. --- Analysis In the first instance, we look at unadjusted changes over time in each morbidity indicator, showing the actual levels of morbidity found in the population. However, we primarily focus on changes after adjustment for sex and age (following others), 66 67 akin to standardising for the agesex composition of the population. Given that our aim is to describe changes rather than to explain them, we do not further adjust for potential causal influences on morbidity that are likely to vary over the period, such as employment over economic cycles. This is a task for future research, but we should note that such analysis is possible using our publicly-available time-series dataset that includes inter alia employment status, education and region. We chose to examine discrete changes from the start to the end of available data for each measure, rather than using linear or non-linear trend terms. Given our aims of informing policy debates, this has three advantages: a discrete change is simple to interpret; it is compatible with the different start/end years available for different measures; and it does not require any assumptions about the functional form of trends (linear trends are particularly unlikely given the role of non-linear economic cycles). Individual survey years are grouped into 3-4year periods to increase sample size and precision, but single-year prevalence is given in online supplementary appendix 7. Given our binary outcome measures, we use logistic regression models with the following form: y i = logit[β 1 period i + β 2 age i + β 3 male i + β(age i * male i )] …where periodi refers to a vector of period dummy variables (covering all periods in which there were any observations: 1994-1996, 1997-2000, 2001-2003, 2004-2007, 2008-2010 and 2011-2014); β1 is a vector of our primary outcome coefficients showing change between each period and the earliest available period; agei refers to a vector of age dummy variables; malei refers to a binary gender dummy variable and β2 , β3 and β4 refer to the coefficients on age, gender and their interaction, respectively. We present average marginal effects rather than odds ratios, partly because these are simple to understand-odds ratios have no easy real-world interpretation for policy-makersbut primarily because odds ratios are not fully comparable across different models, and cannot therefore underpin our comparison of changes over time between indicators. 68 on February 18, 2024 by guest. Protected by copyright. To avoid a binary cut-off of statistical significance, 69 95% CIs are used to convey precision. All analyses use weights, exclude boost samples that use different sampling methods, and adjust for the multistage clustered sample design and the stratification of the sample across survey years using the SVYSET command in Stata (although standard errors will be slightly underestimated as it is not possible to consistently adjust for sample stratification within years). For reasons of space, we are unable to discuss previous HSE studies of specific morbidity trends in the main text; these are instead described in online supplementary appendix 8. --- reSultS --- Conditions with sharply declining mortality We start by focussing on cardiovascular disease (CVD) and respiratory illness which have both seen large falls in mortality (by >50% and >25%, respectively, among 0-64 years old 1994-2013; online supplementary appendix 1). Changes over time in morbidity, however, are shown in table 2. Looking first at high blood pressure, biomarkermeasured high blood pressure has halved over two decades (similar improvements are found for the biomarkers for total and HDL cholesterol). Yet, when we look at self-reports (either people reporting this as an LSI, or in response to a direct question about having recent diagnosed high blood pressure), we see large rises over time. There has been an increasing diagnosis of high blood pressure and increasing prescriptions of blood pressure-lowering drugs; these may have helped reduce the underlying incidence of high blood pressure while simultaneously raising people's awareness of morbidity. Table 2 further shows declines in several key types of CVD (heart attack, mini-stroke, angina), whether measured through people's reports of the disease itself or their reports of its symptoms. Nevertheless, the morbidity declines (8%-50%) are often not on the scale of the declines in mortality (>50%); this is likely to be because mortality declines are partly driven by improved treatment 70 which means each incident CVD case is likely to last longer. 71 72 More surprisingly, the measures of 'any reported CVD' show no improvement (with some, uncertain signs of rises). Looking at its sub-components (online supplementary appendix 6), this seems to be due to possible increases in diagnosed irregular heart rhythm and other heart trouble. Finally, table 2 shows that symptoms-based measures of respiratory morbidity have improved, particularly COPD symptoms (regular cough and phlegm) and breathlessness (at both levels), and more uncertainly for recent wheezing/ asthma and wheezing stopping sleep. Again, though, diagnosis-related measures of asthma-reported diagnoses, or self-reports of having asthma as a LSI-have risen, even while underlying symptomatology is improving. Overall, table 2 illustrates how changes over time in morbidity do not necessarily follow changes in mortality. There are definite improvements in CVD risk factors and respiratory symptomatology on the scale of improvements in mortality. But the prevalence of self-reported CVD conditions such as heart attacks have only declined by a smaller amount, and recent doctor-diagnosed hypertension, any CVD, and asthma diagnoses have either stayed stable or risen. --- Conditions with claims of increasing prevalence The previous section focused on conditions where there may be an a priori expectation that morbidity has improved (given declining mortality); in this section, we focus on three areas where there have been widespread claims of increasing prevalence-obesity, diabetes and mental health. Looking at table 3, we do indeed confirm a large rise in obesity in HSE (an 8.0%-9.7% rise from an obesity prevalence of 16.9% in 1994-1996). The rise in high waist-hip ratios-sometimes suggested to be a better measure of potential morbidity 73 -is even larger. This has come alongside little change in the prevalence of being underweight over this period. Table 3 also confirms a large rise in diabetes. This can be seen whether diabetes is measured through people reporting diabetes as an LSI, a specific question about people currently taking medication for diabetes or via a diabetes biomarker (glycated haemoglobin). This clear rise in diabetes has occurred despite declining age 0-64 death rates from diabetes, which fell by more than one-third 1994-2013 (online supplemetnary appendix 1)-indeed, rising prevalence is because of falling mortality 74 -again demonstrating the difference between changes in mortality and morbidity. Trends in mental health are more contentious in the wider literature (see online supplementary appendix 8), and the measures in HSE are not as strong as the more occasional Adult Psychiatric Morbidity Surveys. 75 Nevertheless, HSE offers a unique annual perspective on self-reported mental health. As we might expect from increasing treatment/diagnosis, we see a doubling in people reporting a mental health LSI. However, the symptoms-based measures show a more mixed picture: ► Neither of the measures that capture more moderate mental ill-health show rising ill-health (these are psychological distress symptoms and people reporting a feeling of anxiety/depression today, both with a relatively common prevalence of 15%-25% appendix 7), we can see moderate mental ill-health symptoms fell between the mid-1990s and the mid-2000s, before rising in 2009. ► In contrast, the single measure capturing a feeling of extreme anxiety/depression today does show rising morbidity. To see if there were similar signs of rising mental ill-health at extremes in our other measure (psychological distress), we looked at a much higher GHQ threshold of 10 negative responses out of 12 questions (compared to the conventional threshold of 4). Unlike the conventional GHQ measure, this also showed an increase over time (95% CI of a 0.4% to 1.4% rise; see online supplementary appendix 6). While the GHQ is not designed to capture severe psychological distress in this way, others have similarly looked at moderate and extreme psychological distress using GHQ-and indeed, have found that rises in distress over time 1991-2008 are concentrated in the more extreme measure. 76 Overall, while labelling of mental health conditions has undoubtedly risen, trends in mental health symptoms vary across measures. If we interpret higher GHQ thresholds as indicating more serious psychological distress, then we can see a consistent picture: moderate mental illhealth symptoms fell from the mid-1990s to the mid-2000s before rising around the time of the 2008 economic crisis (as we would expect), 77 whereas more extreme mental illhealth has more consistently risen. --- Activity limitations, musculoskeletal and pain Pain/musculoskeletal conditions are a major component of working-age morbidity, yet very few previous studies show changes over time in symptomatology, and even those that exist 78 sometimes have debatable comparability. 79 Table 4 shows a fall in some-but not all-HSE measures focused on pain and musculoskeletal morbidity. Arthritis as a LSI has declined (the precision of the estimates is greater when looking at 2008-2010 rather than 2011-2014, and shows a decline of 0.3%-1.2%). There are some (similarly uncertain) signs that other musculoskeletal LSIs have also fallen, and noticeably fewer people say that they have any pain/discomfort today, although there has been no change in people saying they have extreme pain/discomfort. The echoes a previous study that found different trends in low back pain of different levels of severity. 80 In contrast, there has been a rise in all four activity limitations measures in HSE-although the increases are sometimes uncertain, and are smaller after adjusting for changes in age/sex structure. Moreover, the timing of the rises differ between the measures: the trend in limitations lasting at least a year shows a rise in 1994-1996 to 2001-2003, but the two measures of 'limitations today' do not, instead showing a possible slight rise in the more recent period (see online supplementary appendix 7; this difference remains if we focus on the sub-components of year-long limitations that more closely match to the 'limitations today' questions, see online supplementary appendix 6). The measures can collectively be seen as offering some, although relatively weak, evidence for an increase in activity limitations. --- Other measures Changes over time in other measures are shown in table 5. This includes four biomarkers that are more difficult to compare directly to self-reports: ► Changes over time are available for two biomarkers of inflammation (C-reactive protein (CRP) and fibrinogen). These are associated with a number of conditions including heart disease, diabetes, cancer 81 and-in the case of CRP-even depression. 82 Open access the CI is wide and there is a non-negligible possibility that the change is negative). ► The two other biomarkers available in HSE are clearly focused on anaemia and iron deficiency. table 5 shows that both of these have declined, with particularly clear evidence for a decline in iron deficiency. Table 5 also shows changes over time in sensory and communication-related morbidity. This shows a fall in eye/ear conditions (1994-1996 to 2011-2014) as well as hearing limitations in the earlier period (1994-1996 to 2001-2003), but no change in people having difficulty communicating with others. --- DISCuSSIOn Despite considerable evidence on morbidity trends among older people, there are few published studies on changes in morbidity among the working-age population, particularly outside the USA. In this paper, we have analysed changes over time in working-age morbidity in England 1994-2014 using a high-quality repeated crosssectional study. We see improvements in cardiovascular morbidity, respiratory morbidity and anaemia, but deteriorating obesity, diabetes, some biomarkers (fibrinogen and possibly also CRP) and feelings of extreme anxiety/ depression. We see little systematic change over time in more common mental ill-health or musculoskeletal conditions, pain/mobility and self-care limitations. Symptomatology and chronic disease diagnoses also often go in different directions-chronic disease diagnoses have sometimes stayed stable or even risen at the same time that underlying symptomatology has declined (such as for mental health conditions, asthma, hypertension and CVD as a whole), mirroring findings at older ages. 3 Our analysis has several strengths. We include every morbidity measure for which consistent changes can be constructed, including chronic disease, functioning and symptomatology, and biomarkers. We use a single survey series collected by a single survey organisation; exclude under-25s for whom comparability of survey coverage is unlikely; and construct new non-response weights. Nevertheless, we must note three limitations. First, response rates for each stage of the HSE have declined over time (see online supplementary appendix 3), and while we create new non-response weights covering the entire period, it is still possible that socioeconomically disadvantaged people (within any age-sex-region group) have become less likely to respond-and as they tend to be in worse health, this could mask deteriorating morbidity. Second, even if non-response biases have not changed, it is possible that people respond differently over time even to identical questions. Third, there are several dimensions of morbidity for which there is little comparable data in HSE. This includes several areas in which morbidity among the working-age population seems to be rising, including inter alia cognitive complaints, 83 allergic disorders 84 and liver cirrhosis (see online supplementary appendix 1), as well as some areas in which morbidity seems likely to have fallen, such as chronic kidney disease. 85 It is clear that there are different trends in different dimensions of morbidity-but for policy-makers, this leaves the question of whether working-age morbidity as a whole is unchanged (H2), getting better (H1) or getting worse (H3), to the extent that it makes sense to place health on a unidimensional scale. While we cannot create a single morbidity index here, online supplementary appendix 9 shows the association of each measure with bad general self-rated health (net of age, gender and education). This shows little systematic trend for falling morbidity to be seen in the measures that predict health the most (indeed, the evidence weakly points in the other direction, towards rising morbidity). This provides greater support for H2 than H1 or H3, mirroring evidence from In conclusion, despite considerable falls in working-age mortality and gains in life expectancy-and the ensuing expectations of social security policy-makers for improving morbidity-there is no evidence of systematic improvement in overall working-age morbidity in England from 1994 to 2014. However, two pieces of further research could strengthen this evidence base. First, the ideal measures for analysing changes in morbidity are functional limitations measures which are included in the HSE from 1996. However, these were last asked to the working-age population in 2001, and it is a priority to repeat these measures in future years of HSE. Second, there is a surprising paucity of studies looking at the changing morbidity of the working-age population outside the USA. Given their importance in public debate-particularly in discussions of retirement ages and disability benefits-we hope that other authors will repeat and extend our analyses here, including disaggregating these changes across different regions and sociodemographic groups. Correction notice This article has been corrected since it was first published. Data in the table 2-5 has been corrected. twitter Ben Baumberg Geiger @BenBaumberg --- http://bmjopen.bmj.com/ BMJ Open: first published as 10.1136/bmjopen-2019-032378 on 15 March 2020. Downloaded from on February 18, 2024 by guest. Protected by copyright. http://bmjopen.bmj.com/ BMJ Open: first published as 10.1136/bmjopen-2019-032378 on 15 March 2020. Downloaded from on February 18, 2024 by guest. Protected by copyright. http://bmjopen.bmj.com/ BMJ Open: first published as 10.1136/bmjopen-2019-032378 on --- Data availability statement Data are available in a public, open access repository. The Health Survey for England 1994-2014 are available for free to registered users at the UK Data Service -see https:// beta. ukdataservice. ac. uk/ datacatalogue/ series/ series? id= 2000021#!/ abstract. There are no conditions for re-use for non-commercial applications of the data. The statistical code enabling replication using publicly available data is available from OSF (Morbidity in England 1994England -2014 --- Competing interests No. Patient consent for publication Not required. Provenance and peer review Not commissioned; externally peer reviewed.

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A Variational Point Process Model for Social Event Sequences

Many events occur in real-world and social networks. Events are related to the past and there are patterns in the evolution of event sequences. Understanding the patterns can help us better predict the type and arriving time of the next event. In the literature, both feature-based approaches and generative approaches are utilized to model the event sequence. Feature-based approaches extract a variety of features, and train a regression or classification model to make a prediction. Yet, their performance is dependent on the experience-based feature exaction. Generative approaches usually assume the evolution of events follow a stochastic point process (e.g., Poisson process or its complexer variants). However, the true distribution of events is never known and the performance depends on the design of stochastic process in practice. To solve the above challenges, in this paper, we present a novel probabilistic generative model for event sequences. The model is termed Variational Event Point Process (VEPP). Our model introduces variational auto-encoder to event sequence modeling that can better use the latent information and capture the distribution over inter-arrival time and types of event sequences. Experiments on real-world datasets prove effectiveness of our proposed model.

Introduction Events happen in real-world and on social networks. In online shopping, an event can represent user behaviors, such as click, cart or purchase (Liu et al. 2015). In geophysics, an event can be an earthquake (Sakaki, Okazaki, and Matsuo 2010). In online social media, events can be user actions (e.g., like, comment and retweet) over time, which have some features like user influence, content, time and connectivity of the social network (Fu 2011;Rizoiu et al. 2017;Shi et al. 2017). Online events usually follow the hot topics that caused by some significant news. For example, Figure 1 shows the interest about "Apple" over time in the last year 1 . Apparently, the peaks are related to special events of Apple company (e.g., product launch conference) or holidays like Christmas. --- Apple Special Event Figure 1: Google trends about "Apple". We add the relative events on the figure. The so-called event sequences contain a series of events of different types in the continuous time domain. In an event sequence, the past events and the next event are related (Chang et al. 2015). Take the previous three types of events as examples: buyers' historical behaviors can be considered as their decision making processes. The aftershocks can happen with a month, or within days, from the main shock. Retweets could be grouped with topics of interest and timeline. The pattern of events may help cause or prevent future events. Thus, techniques to discover patterns among events are urgently required, so that the future of an event sequence can be accurately predicted (Xu et al. 2018). In the literature, feature based methods extract relevant features and apply different machine learning algorithms to predict the type and arrival time of the future events (Naveed et al. 2011;Cheng et al. 2014;Bakshy et al. 2011;Zaman et al. 2010). However, these models heavily depend on manually selected features. It is a fatal flaw as designing features requires much expertise, especially for large-scale dataset with high dimensional features, which may severely limit its application. Recently, some other prior arts based on generative approaches are proposed, (Shen et al. 2014;Cao et al. 2017;Luo et al. 2015;Lukasik et al. 2016), in which historical events are modeled to have impact on future ones. However, the generative methods depend on the design of stochastic process and the information hidden in the sequences cannot be fully leveraged. Variational Auto-Encoder (VAE) (Kingma and Welling 2014) is a powerful class of probabilistic models and has the ability to model complex distributions. In recent years, VAE are used in time-series (Babaeizadeh et al. 2018;Denton and Fergus 2018;Hu et al. 2017;Li and Mandt 2018). These models integrate VAE with RNN/LSTM to build a bridge between high interpretability and high predictive power. Along this line, in this paper, we present a novel probabilistic generative model for event sequences which we call Variational Event Point Process or VEPP. Firstly, we use LSTM to embed the event sequences, so the features can be automatically extracted and utilized by the powerful neural network. Secondly, our model introduces variational auto-encoder to event sequence modeling that can use the latent information and capture the distribution over event sequences. Finally, on two real-world datasets, we find that VEPP has higher log-likelihood in the mission of predicting event type and lower error in the mission of predicting time intervals. The experiments demonstrate that VEPP can model the future of event sequences. --- Related Work In this section, we briefly summarize the related work to deal with the event prediction problem as two groups, i.e., feature-based and generative approaches. The first category is feature based methods, which first extract some relevant features, including content, user information, original posters, network structure, and temporal features (Cheng et al. 2014;Lian et al. 2015;Wang et al. 2015). Then different machine learning algorithms are applied to build a regression or classification model, such as content-based models (Naveed et al. 2011), simple regression models (Cheng et al. 2014), regression trees (Bakshy et al. 2011) and probabilistic collaborative filtering (Zaman et al. 2010). However, these methods require much laborious feature engineering with expertise, which is hard to design, and their performance is highly sensitive to the quality of features. Besides, such approaches also have limitation in practice because they cannot be used in real-time online settings, like real-time event detection on Twitter. Given the large amount of data being produced every second, it is practically impossible to extract all the necessary features so the application is severely limited. The second type is generative approaches which are usually based on temporal point process, like Poisson process and its complexer variants (e.g., Reinforced Poisson Processes, Hawkes Process and Self-Correcting Process). A temporal point process can be used to capture the interarrival times of event sequences (Daley and Vere-Jones 2007). It directly models complicated event sequences in which historical events have influences on current and future ones. Reinforced Poisson Processes (RPP) is employed to model the phenomena in social networks (Shen et al. 2014). Hawkes process, a variant of Poisson process, has been proven to be useful for describing real-world data in social network analysis (Cao et al. 2017). Furthermore, multiply variants of Hawkes process are proposed to solve the issues of event sequences. Luo et al. (2015) proposed multi-task multi-dimensional Hawkes processes for modeling event sequences. Lukasik et al. (2016) applied Hawkes processes for rumour stance classification on Twitter. However, in practice the true distribution of events is never known and the performance depends on the design of stochastic process. Besides, these methods generally are not directly optimized for future events. They cannot fully leverage the information implied in the sequences for prediction. There still remains a gap between the interpretability and predictability. --- Preliminaries In this section, we first give the problem definition, and then briefly introduce the two basic models for the temporal point process and Variational Auto-Encoders. --- Problem definition As shown in Figure 2, the input is a sequence of events x 1:n = (x 1 , • • • , x n ), where x n is the n-th event. The event x n = (k n , τ n ) is represented by the event type k n ∈ {1, 2, • • • , K} (K discrete event classes) and the time inter- val τ n ∈ R + . The time interval τ n = t n -t n-1 is the difference between the starting time of event x n-1 and x n . Given a sequence of events x 1:n-1 , the event sequence modeling task is to produce a distribution over the event type k n and the time interval τ n of the next happening event. We aim to develop probabilistic models to predict what and when the next event will happen. --- Temporal point process A temporal point process is a random process which is used to capture the time intervals of event sequences (Daley and Vere-Jones 2007). A temporal point process is characterized by the conditional intensity function λ(t n |x 1:n-1 ), which is conditioned on the past events x 1:n-1 . The conditional intensity is the expected infinitesimal rate at which events are expected to occur around time t. Given the n-1 past events, the probability density function for the time interval of next event is: f (τ n |x 1:n-1 ) = λ(τ n |x 1:n-1 )e -τn 0 λ(u|x1:n-1)du . (1) The Poisson process (Kingman 2005) is the simplest and most ubiquitous example of point process, which assumes that events occur independently of one another. The conditional intensity is λ(τ n |x 1:n-1 ) = λ, where λ is a positive constant. Furthermore, more complex point processes have been proposed, like Hawkes Process (Hawkes 1971) and Self-Correcting Process (Isham and Westcott 1979). All these processes try to model the dependency on the past events. For example, Hawkes process is a self-exciting process in which the arrival of an event causes the conditional intensity (k 1 , t 1 ) (k 2 , t 2 ) (k 3 , t 3 ) p(z 4 ) k 4 0. λ(t n |x 1:n-1 ) = λ 0 (t n ) + n-1 i=1 φ(t -T i ),(2) where T i < t are all the event time having occurred before current time t n , and which contribute to the event intensity at time t n . λ 0 (t n ) is a deterministic base intensity function, and φ is called the memory kernel. However, the true model of the dependencies is never known in practice (Mei and Eisner 2017) and the performance depends on the design of conditional intensity. In this work, we learn a variational model that fits the conditional intensity by the history of events. --- Variational Auto-Encoders A Variational Auto-Encoder is a generative model which can effectively model complex multimodal distributions over the data space. A VAE introduces a set of latent random variables z, designed to capture the variations in the observed variables x. The joint distribution is defined as: p θ (z|x) ∝ p θ (x|z)p θ (z). The simple prior p θ (z) is usually chosen to be a multivariate Gaussian. The parameters of complex likelihood p θ (x|z) are produced by neural networks. Approximating the intractable posterior p θ (z|x) with a recognition neural network q φ (z|x) the parameters of the generative model θ as well as the recognition model φ can be jointly optimized by maximizing the evidence lower bound (ELBO) L on the marginal likelihood p θ (x): log p θ (x) = KL(q θ ||p θ ) + L(θ, φ) ≥ L(θ, φ) = -E q φ log q φ(z|x) p θ (z, x) . (3 ) Recent works apply VAEs to time-series data including video (Babaeizadeh et al. 2018;Denton and Fergus 2018;Mehrasa et al. 2019), text (Hu et al. 2017), and audio (Li and Mandt 2018;Chung et al. 2015). Such models usually integrate a time-step VAE with RNN/LSTM. The ELBO thus becomes a summation of time-step-wise variational lower bound: L θ,φ = N n=1 E q φ (z1:n|x1:n) [log p θ (x n |x 1:n-1 , z 1:n )] -KL(q φ (z n |x 1:n )||p θ (z n |x 1:n-1 )) . (4) --- Variational Event Point Process In this section, we give the details of our VEPP model. We propose a generative model for event sequence modeling by using the VAEs. Figure 3 shows the architecture of our model. Overall, the types of events and their time intervals are encoded using a recurrent VAE model. At each step, the model uses past events to create a distribution over latent codes z n , a sample of which is then decoded into two probability distributions: one over the possible event types and another over the time intervals for the next event. --- Event representing and embedding As shown in Figure 3(a), at time step n, the model takes the event x n as input, which is the prediction target, and also the past events x 1:n-1 . These inputs are used to product a conditional distribution q φ (z n |x 1:n ) from which a latent code z n is sampled. The true distribution over latent variables z n is intractable. We rely on a time-dependent inference network q φ (z n |x 1:n ) that approximates it with a conditional Gaussian distribution N (μ φn , σ 2 φn ). To prevent z n from just copying x n , we force q φ (z n |x 1:n ) to be close to the prior distribution p(z n ) using a Kullback-Leibler divergence term. At each step during training, a latent variable z n is drawn from the posterior distribution q φ (z n |x 1:n ). The output event xn is then sampled from the distribution p θ (x n |z n ) of the conditional generative model which is parameterized by θ. For convenience, we assume the event type and time inter-vals are conditionally independent given the latent code z n : p θ (x n |z n ) = p θ (k n , τ n |z n ) = p k θ (k n |z n )p τ θ (τ n |z n ),(5) where p k θ (k n |z n ) and p τ θ (τ n |z n ) are the conditional generative model for event type and time interval, respectively. It is a standard assumption in event prediction (Du et al. 2016). The sequential model generates two probability distributions: a categorical distribution over the event types and a temporal point process over the time interval for the next event. The event types are modeled with a multinomial distribution in which case k n can only take a finite number of values: K i=1 p k θ (k n = i|z n ) = 1,(6) where p k θ (k n = i|z n ) is the probability that event type i will occur, and K is the total number of event types. The time interval follows an exponential distribution whose parameter is λ(z n ), similar to a standard temporal point process model: p τ θ (τ n |z n ) = λ(z n )e -λ(zn)τ n if τ n ≥ 0,(7) where p θ (τ n |z n ) is a probability density function over variable τ n and λ(z n ) is the intensity of the temporal point process, which depends on the latent variable sample z n . At step n, the current event x n is represented as a vector x emb n with a two-step embedding strategy. First, we compute a representation for the event type k n and the time interval τ n separately. Then, we concatenate these two representations and get a new representation x emb n of the event: k emb n = Emb k (k n ), τ emb n = Emb τ (τ n ),(8) x emb n = Emb k,τ ([k emb n , τ emb n ]). Here, Emb k , Emb τ and Emb k,τ represent the embedding functions. A one-hot encoding is used to represent the event type k n . --- Generation The VEPP contains a VAE at every time step. However, these VAEs are conditioned on the state variable h n-1 of an LSTM. It will help the VAE to take into account the temporal structure of the sequential data. Unlike a standard VAE, the prior on the latent random variable is no longer a standard Gaussian distribution, but follows the distribution: z n ∼ N (μ n , σ 2 n ), μ n , σ 2 n = f prior (h n-1 ),(9) where μ n and σ n are the parameters of the conditional prior distribution and f prior can be any highly flexible function such as neural networks. x n-1 LSTM Embedding Decoder z n n (a) At each time step, the model uses the history of event sequences and inter-arrival times to generate a distribution over latent codes. Firstly, we sample z n from the prior to generate an event at step n. The parameters of the prior distribution are calculated based on the past n -1 events x 1:n-1 . Then, an event type kn and time interval τn are generated as follows: kn ∼ p k θ (k n |z n ), τn ∼ p τ θ (τ n |z n ).(10) The decoder network for event type f k θ (z n ) is a MLP with a softmax output to generate the probability distribution in Equation ( 6): p k θ (k n |z n ) = f k θ (z n ). (11) The decoder network for time interval f τ θ (z n ) is another MLP, producing the parameter of the point process model for temporal distribution in Equation ( 7): λ(z n ) = f τ θ (z n ).(12) The LSTM encodes the current event and the past events into a vector representation: h n = LST M φ (x emb n , z emb n , h n-1 ). (13 ) Recurrent networks turn variable length sequences into meaningful, fixed-sized representations. The parameterization of the generative model results in the factorization: p(x 1:N , z 1:N ) = N n=1 p(xn|z 1:n , x 1,n-1 )p(zn|x 1:n-1 , z 1:n-1 ) (14) --- Inference The posterior is proportional to the product of the likelihood and the prior. So the approximate posterior will not only be z n |x n ∼ N (μ z,n , σ 2 z,n ), μ z,n , σ 2 z,n = Enc(x n , h n-1 ),(15) where μ z,n and σ z,n denote the parameters of the approximate posterior. The encoding of the approximate posterior and the decoding for generation are tied through the LSTM hidden state h n-1 . This conditioning on h n-1 results in the factorization: q(z 1:N , x 1:N ) = N n=1 q(z n |x 1:n , z 1:n-1 ). (16 ) --- Learning We train the model by optimizing the variational lower bound over the entire sequence comprised of N steps: L θ,φ (x 1:N ) = N n=1 (E q φ (zn|x1:n) [log p θ (x n |z n )] -KL(q φ (z n |x 1:n )||p θ (z n |x 1:n-1 ))). (17 ) Given the latent code z n , the event type and time interval are conditionally independent, so the log-likelihood can be written as follows: E q φ (zn|x1:n) [log p θ (x n |z n )] = E q φ (zn|x1:n) [log p k θ (k n |z n )] + E q φ (zn|x1:n) [log p τ θ (τ n |z n )]. (18 ) Given the form of p k θ , the log-likelihood reduces to a cross entropy between the predicted event type p k θ (k n |z n ) and the ground truth k * n . Given the ground truth time interval τ * n , we calculate its log-likelihood over a small time interval Δ τ under the predicted distribution. log τ * n +Δτ τ * n p τ θ (τ n |z n )dτ n = log(1 -e -λ(zn)δt ) -λ(z n )τ * n . (19 ) --- Experiments In this section, we evaluate the performance of VEPP on two real-world datasets, i.e., Retweets Dataset (Zhao et al. 2015) and MemeTrack Dataset (Leskovec, Backstrom, and Kleinberg 2009). --- Datasets Retweets dataset The Retweets dataset includes 166, 076 retweet sequences, each corresponding to some original tweet. Each retweet event is labeled with the retweet time relative to the original tweet creation, so that the time of the original tweet is 0. Each retweet event is also marked with the number of followers of the retweeter. As usual, we assume that these 166, 076 streams are drawn independently from the same process, so that retweets in different streams do not affect one another. Unfortunately, the dataset does not specify the identity of each retweeter, only his or her popularity. To distinguish different kinds of events that might have different rates and different influences on the future, following previous study of Mei and Eisner (2017), we divide the events into K = 3 types: retweets by "small", "medium" and "large" users. Small users have fewer than 120 followers (50% of events), medium users have fewer than 1, 363 (45% of events), and the rest are large users (5% of events). Given the past retweet history, our model must learn to predict how soon it will be retweeted again and how popular the retweeter is (i.e., which of the three types). We randomly sampled disjoint train and test sets with 20, 000 and 2, 000 sequences respectively. We truncated sequences to a maximum length of 264, which affected 20% of them. For computing training and test likelihoods, we treated each sequence as the complete set of events observed on the interval [0, T ], where 0 denotes the time of the original tweet, which is not included in the sequence, and T denotes the time of the last tweet in the truncated sequence. --- MemeTrack dataset The MemeTrack Dataset considers the reuse of fixed phrases, or "memes", in online media. It contains time-stamped instances of meme use in articles and posts from 1.5 million different blogs and news sites, spanning 10 months from August 2008 till May 2009, with several hundred million documents. The K event types correspond to the different websites. Given one meme's past trajectory across websites, our model can learn to predict how soon and where it will be mentioned again. We followed the previous study of Gomez-Rodriguez et al. ( 2013) to process the dataset, which selected the top 5, 000 websites in terms of the number of memes they mentioned. We truncated sequences to a maximum length of 31 and selected the minimum length of 2. We randomly sampled disjoint train and test sets with 96, 391, and 2, 470 sequences respectively, treating them as before. Table 1 shows statistics of the two datasets. The two datasets have very different characteristics. --- Architecture details The VEPP model architecture is shown in Figure 3 --- Implementation details The models are implemented with TensorFlow (Abadi et al. 2016) and are trained using the Adam (Kingma and Ba 2015) optimizer for 1, 000 epochs with batch size 32 and learning rate 0.001. We split both datasets into training and test sets containing 70% and 30% of samples respectively. We select the best model during training based on the model loss (18) on the test set. --- Baselines Poisson Process The intensity function is a constant, which produces an estimate of the average inter-event gaps. Hawkes Process (HP) Hawkes process is a self-exciting point process, in which past events from the history conspire to raise the intensity of each type of events. Such excitation is positive, additive over the past events, and exponentially decaying with time. Self-Correcting Process (SCP) We fit a self-correcting process with the intensity function in the book of Daley and Vere-Jones (2007). --- Recurrent Marked Temporal Point Processes (RMTPP) RMTPP is proposed in the study of Du et al. (2016). It views the intensity function of a temporal point process as a nonlinear function of the history, and uses a recurrent neural --- Metrics We use log-likelihood (LL) of event type to compare our model with the HP and RMTPP. For Poisson Process and Self-Correcting Process, their performance on event type prediction are similar to Hawkes Process and not very satisfactory. LL = log n i=1 f (x i |Ω) = n i=1 log f (x i |Ω) = n i=1 l(Ω|x i ). We also compare Root Mean Square Error (RMSE) of interarrival time prediction. .08 -6.58 -6.58 -6.48 -6.68 MemeTrack -10.9 -10.7 -10.5 -10.2 -10.0 RMSE = 1 N N i=1 (τ i -τ i ) 2 0.51 --- Experiment Results Overall performance Table 2 shows experimental results that compare VEPP with HP and RMTPP. VEPP outperforms HP and RMTPP on both Retweets and MemeTrack datasets. We believe that this is because the VEPP model is better in modeling the complex distribution over future events. For Retweets dataset, three methods all have relatively good performance. The reason may be the events of Retweets dataset have less types, so the patterns of event sequences are easy to model. Correspondingly, for Meme-Track dataset, VEPP and RMTPP significantly outperform HP. It is may because the event types are nearly 5, 000 and much larger than Retweets datasets. It also proves that VAE can use the latent information of event sequences and VEPP has the ability to modeling the complex distribution over future events. The prediction error is high for MemeTrack dataset due to the large number of types. Figure 4 shows RMSE in predicting the time interval given the history of previous events. VEPP achieves the lowest error, i.e., outperforms the other methods under the metric. The three methods based on point process have relatively higher error, because the designed point process does not fit the real situation. RMTPP and VEPP achieve better results, since they can learn the complex distribution. While VEPP can also use the latent information over the event sequence, it performs even better. Sensitive of latent variable dimensionality of LSTM We next explore the architecture of our model by varying the sizes of the latent variable. Table 3 shows the log-likelihood of our model for different sizes of the latent variable. We see that as we increase the size of the latent variable, we can model a more complex latent distribution which results in better performance. --- Learning curves --- Conclusion We presented a novel probabilistic model for sequence data, a variational auto-encoder that captures uncertainty in event types and arrival time. As a generative model, it could produce event sequences by sampling from a prior distribution, the parameters of which were updated based on neural networks that control the distributions over the next event type and temporal occurrence. The model could also be used to analyze given input sequences of events to determine the likelihood of observing particular sequences. We demonstrated empirically that the model is effective for capturing the uncertainty inherent in event prediction. In future, we will take into account the structural and contextual information to model the event sequences.

3e6e7f786d2f3dfc6cf39ce7988dd71b17b9334c

The changing contribution of childhood social characteristics to mortality: a comparison of Finnish cohorts born in 1936–50 and 1961–75

Background: Life course epidemiology suggests that early life circumstances affect adult mortality, but most of the evidence is based on cohorts born in the beginning of the 20th century. It remains unclear whether and how the influences of early life circumstances on mortality have changed in later birth cohorts. Methods: Analyses rely on 10% register-based samples of households drawn from the 1950 and the 1975 Finnish censuses, with consistent follow-up of socioeconomic and housing-related characteristics and early mid-life mortality (at ages 30-55 years). We estimate survival models for the associations between childhood circumstances and all-cause, internal and external mortality for cohorts born in 1936-50 and 1961-75 adjusting for attained social characteristics. We estimate sibling intraclass correlations as summary measures of all early life and familial influences. Results: Adverse childhood social circumstances were typically associated with about 10-30% excess cause-specific mortality. These associations were almost fully attenuated by adjustment for achieved later life social characteristics. Early life influences have grown over time for mortality from external causes, particularly as related to home ownership and family type. Differentials have remained stable for internal causes. The intraclass correlations further confirmed the increasing association of early life circumstances on external-cause mortality. Conclusions: Our analyses show that the associations between childhood characteristics and mid-life mortality are substantial and almost fully mediated by achieved adult social

Introduction Social inequalities in mortality have been extensively documented. 1,2 Until fairly recently, most studies of social inequalities in adult mortality have focused on the role of adult characteristics. However, as evidence of the associations between childhood living conditions and adult health has accumulated, increased attention is now being paid to the contribution of the entire life course. [3][4][5][6] The accumulated evidence in life course epidemiology suggests that childhood nutritional status, health, socioeconomic status, place of residence and other household characteristics predict adult health and mortality. [7][8][9][10][11][12][13] The mechanisms through which childhood environment is hypothesized to influence adult health include indirect mechanisms operating through attained adult social characteristics (e.g. education, other socioeconomic status and lifestyle) and direct effects of in utero programming and childhood health. 14 Most of the evidence on the contribution of childhood conditions to adult mortality is based on historical cohorts and cohorts born in the early part of the 20th century. 4,5,8 The conditions at the time when these cohorts grew up were characterized by high rates of infectious diseases, poor nutrition and hygiene and high rates of poverty and material hardship. The findings obtained from these earlier cohorts may no longer apply to more recent cohorts. In the latter half of the 20th century, Western countries experienced rapid economic growth, social changes and improvements in health conditions and overall standard of living. However, because of the simultaneously decreasing household size, postponement of marriage and childbearing, higher rate of union dissolution and overall diversification of family forms, more recent cohorts have experienced a more diversified childhood family structure than earlier cohorts. These changes may have also influenced the mechanisms or pathways through which childhood circumstances influence adult health and mortality. Changes in economic structure, educational expansion and changing family forms have gradually transformed the work and family lives of cohorts that entered adulthood in the second half of the 20th century. Similarly, changing patterns of lifestyle risk factors-for example, the emergence and the decline of the smoking epidemic and the arrival of an obesogenic food environment-have influenced the health of more recent cohorts. Currently, there are no studies that we know of that compare the influence of early life circumstances on adult mortality of cohorts born before and after mid-20th century. In this paper, we: (i) compare the associations between various childhood circumstances and adult total and cause-specific mortality in Finland across cohorts born in 1936-50 and 1961-75; (ii) examine whether the effects of childhood characteristics are operating through attained adult social characteristics; and (iii) examine whether these effects may have changed across the two cohorts. --- Methods --- Participants and mortality follow-up We used two 10% random samples of households drawn from the 1950 and 1975 Finnish censuses. The samples were linked with register-based follow-up of death records using personal identifiers available to all permanent residents of Finland (Statistics Finland permission TK-53-789-10 and TK-53-155-17). We included individuals aged 0-14 years, living in private households at the time of the 1950 (birth cohorts 1936-50, n ¼ 117 061) and the 1975 census (birth cohorts 1961-75, n ¼ 102 280). The census data contained identifiers for families and households making it possible to identify family members. We used these identifiers in linking children with information on their parents' characteristics. The 1950 sample has been linked to quinquennial census records in the years 1970-95 and to death records for the years 1970-2007. [15][16][17][18] The 1975 sample was designed to be identical in structure; with linkage to census records in 1995, 2000 and 2005 and to death records until the end of 2016. For both samples we measured childhood characteristics from the household census (i.e. at age 0-14) and the individual's own educational attainment from the first quinquennial end-of-year census after the subjects turned 30. Adult characteristics were thus measured at ages 30-34 depending on the birth year. Mortality follow-up begun at the time of the assessment of adult characteristics at age 30-34. Of the sampled children, we excluded those whose parents could not be identified and those who, due to death or emigration, were not in the census when adult characteristics were measured (1950: n ¼ 19 184, 1975: n ¼ 8331). To guarantee comparability in the mortality follow-up, we followed the 1975 cohort to the end of 2016 and the 1950 cohort to the end of 1991 until the cohort members were aged 41-55. Cause of death was classified according to the 8th, 9th or 10th revision of the International Classification of Diseases and Deaths (ICD) with coding made comparable across the ICD revisions by Statistics Finland. Our final analyses were based on 1 467 360 person-years and 3592 deaths in the 1950 sample and 1 527 929 person-years and 2491 deaths in the 1975 sample. The design of the study is shown in Figure 1. --- Childhood characteristics Childhood characteristics came from the 1950 or the 1975 censuses when the cohort members were aged 0-14. We measure both socioeconomic and housing-related characteristics. For highest parental occupational class we distinguished the following groups: (i) non-manual, (ii) manual, (iii) farmers, (iv) employers/self-employed, and (v) others. We coded highest parental education as (i) upper secondary or higher, (ii) lower secondary and (iii) primary school or less. Of the housing-related characteristics, home ownership included: (i) home owners, (ii) renters (including those for whom the employer provided housing) and (iii) others/unknown. We characterized childhood housing conditions by household crowding coded as the number of persons per heated room in the dwelling (<2, 2.0-2.99, 3.0-3.99, 4þ and unknown). Childhood family structure distinguished: (i) two-parent and (ii) single-parent families. --- Adult characteristics Adult characteristics were measured in subsequent censuses when the participants were aged between 30 and 34 years (the first 5-year census after turning 30) when most had completed their education and begun occupational and family careers. Occupational class was divided into (i) non-manual, (ii) manual, (iii) farmers, (iv) employers/self-employed and (v) others. Unemployed and retired persons were classified according to their previous occupations; housewives were categorized according to the occupation of the head of household. We distinguished between four educational levels: (i) higher tertiary (16þ years) education, (ii) lower tertiary (13-15 years), (iii) secondary (11-12 years) and (iv) basic or primary (9 years). Home ownership included (i) home owners, (ii) renters (including those for whom the employer provided housing) and (iii) others and unknown. Marital status was coded as (i) married, (ii) divorced/separated/widowed and (iii) never married or unknown. --- Causes of death We examined all-cause mortality as well as alcohol¼related, accidental and violent causes of death (ICD-10 F10, G312, G4051, G621, G721, I426, K292, K70, K860, K852, 0354, P043, Q860, V01-Y89 as the underlying cause) separately, as these are common among Finnish people. --- Statistical methods We used mixed-effects survival models to estimate allcause and cause-specific mortality from the age of 30-34 until the end of follow-up, which for the oldest individuals was 55 years. The baseline hazard was assumed to follow the Weibull distribution stratified by sex (we tested for sex interactions but these were negligible). As the data consist of persons nested in families, we use a two-level random intercept specification to take account of family clustering and allow for the estimation of family-specific random intercepts. The results are presented as hazard ratios based on coefficients from the proportional hazard parameterization [hazard ratio (HR) ¼ e b ] and their 95% confidence intervals (CIs). To test for change in the associations over the two samples, we pooled the data and included interactions with birth cohort. In order to assess the similarity in survival between siblings, we used the accelerated failure-time metric of the same model to estimate the family-level variance h. Because the individual level error term in Weibull models follows the Gumbel distribution, the individual-level variance is p 2 6p 2 where p is the shape parameter of the Weibull distribution and is obtained from the model. The sibling correlation measuring the sibling similarity in mortality (intraclass correlation is the share of total variation in midlife mortality which was explained by between-family differences) and is calculated according the method suggested by Goldstein et al. 19 for each model: Intraclass correlation ¼ h h þ p 2 6p 2 We take the sibling intraclass correlation to be a summary measure of all early life influences, both observed and unobserved, that are shared by siblings, 6 thus reflecting shared genetic and social influences. The 'mestreg' command in Stata 14.2 was used for the estimation and 'nlcom' command for obtaining the 95% confidence intervals for the sibling correlation. --- Results The later cohorts had more highly educated parents who were much more likely to be employed in professional occupations (Table 1). Similarly, they had somewhat higher levels of education and were somewhat more likely to be employed in professional occupations than the cohorts born before the middle of the 20th century. In the 1950 sample, less educated or manual worker parents and children living in crowded or single-parent households had higher all-cause mortality in early mid-life, whereas home ownership in childhood was unassociated with early mid-life mortality (Table 2). There was no consistent evidence that these mortality differentials would have declined for the more recent birth cohorts in the 1975 sample. Instead, some of these associations appear to have increased. In particular, increase in the strength of the associations was especially strong for housing-related circumstances, such as living in rented housing (HR ¼ 1.03 to HR ¼ 1.21, with a cohort interaction parameter 1.17 95% CI 1.05, 1.31) in the last column) and living in single-parent households and in households with three persons per room. However, differences in mortality by parental education and occupational class have remained stable. Tables 3 and4 replicate the analyses for two broad causes of death; internal causes (Table 3) and external (alcohol-related, accidental and violent) causes of death (Table 4). For internal causes in the 1950 sample, most childhood characteristics were associated with elevated mortality, and these differentials were mostly similar to those observed in the 1975 sample with the exception of living in a household with over three people per heated room. However, the increase in the all-cause mortality differentials by childhood housing-related circumstances is mainly driven by external causes. For these causes of death, Separately for each index category, tests whether the hazard ratios are equal between the two cohorts in the baseline model. most childhood characteristics were more strongly associated with the risk of death in the 1975 than the 1950 sample. For example, the hazard ratio for single parenthood had increased by 30%. The associations between parental characteristics and mid-life mortality were substantially attenuated after adjusting for the individual's own adult social characteristics. This occurred for both cause of death groups and allcause mortality. After these adjustments, the associations between childhood circumstances and mid-life mortality were modest, indicating strong mediation by achieved adult social characteristics. Further adjustment for all childhood characteristics simultaneously changed the model estimates only little. Our estimates of sibling correlations-a summary measure of all early life and familial influences shared by siblings, both observed and unobserved-have increased for total mortality from 0.17 (95% CI 0.10, 0.24) in the 1950 cohort to 0.29 (95% CI 0.20, 0.37) in the 1975 cohort (Table 5). Sibling correlations for external causes of death increased from 0.28 (95 % CI 0.17-0.39) to 0.45 (95 % CI 0.36-0.54), and this increase cannot be explained by adjustment for achieved adult social characteristics. --- Discussion We evaluated the association between childhood circumstances and mid-life mortality in two Finnish cohorts, born in 1936-50 and 1961-75. We showed persistent associations between early life socioeconomic and family circumstances and mid-life mortality which are almost fully mediated through achieved social characteristics at ages 30-34. Despite the extremely rapid modernization and increasing affluence of the Finnish society in the latter part of the 20th century, these associations have not decreased between the cohorts. On the contrary, similarly to increased mortality differentials by adult social characteristics, [20][21][22] differentials according to childhood circumstances have increased over time for external causes of death. These increases have been substantial enough for housing-related childhood conditions to have a corresponding effect on allcause mortality. For internal causes the associations of childhood characteristics have remained stable. Most of the evidence on the association between childhood socioeconomic characteristics and later life mortality is from cohorts born in the first decades of the 20th century. Comparing separate studies that have recruited participants from several birth cohorts seems to tentatively indicate that the associations have not disappeared in more recent cohorts. 9 However, this conclusion is based on qualitative comparison of distinct studies using different methodologies, statistical adjustments and social contexts. Using consistent approaches over birth cohorts we show that, despite consistent temporal change towards improving childhood material living conditions, the 'long arm of childhood' has not only remained robust but has grown stronger. This increase is particularly evident for childhood experiences of rented accommodation, single-parent household and, in the case of alcohol-related, accidental and violent causes, also with having a primary educated or manual parental background. The observation that alcohol-related, accidental and violent causes are particularly strongly associated with early life is not new. 23 It is likely that these associations are driven partially by early adoption of risky behaviours, in particular alcohol and other substance use, in the more disadvantaged childhood environments with both chronic and binge-drinking being responsible. Our particular contribution, however, is to show increasing associations between several measures of childhood disadvantage with these causes of death over time. The association between childhood disadvantage and adult problem drinking is not fully conclusive. 24,25 For the purposes of this study, reliable evidence on alcohol use is difficult to obtain, mainly because of survey non-response, recollection and desirability biases and lack of comparative information on childhood disadvantage over different cohorts. However, it is tempting to speculate that alcohol and other substance use is ever more strongly associated with childhood disadvantage and underlies the increasing association with external mortality found in this study. It is possible that the long-term relaxation of alcohol control policies in Finland-affecting the younger cohorts more strongly-may have exacerbated these associations. Overall, these results imply that despite declining mortality in mid-life over time, a socioeconomically adverse start in life is in relative terms increasingly more hazardous to health. Empirically disentangling the role of various life course models remains difficult. Our results and many previous analyses of childhood socioeconomic influences on mortality indicate that these associations can be best understood in a life course framework, in which the associations of childhood socioeconomic characteristics are strongly mediated through achieved later life social position, 5,26 with own education being particularly relevant. 9 Similar findings have also been obtained in studies on health outcomes other than mortality. [27][28][29][30] The results also indicate that the associations of childhood characteristics on mid-life external mortality, which are mediated through attained social characteristics, have grown over time. This may come about because of at least two processes; first, the emergence of an ever-stronger association between the mediators and mortality. This possibility is supported by the fact that we know that the associations of achieved social characteristics with mortality have grown over time in Finland. [31][32][33] Second, the rise of a stronger association between childhood and adult characteristics. This possibility is supported by complementary analyses presented in Supplementary Tables 1234, available as Supplementary data at IJE online. These show that the associations between childhood-in particular those between childhood family type and home ownership-and disadvantaged adult social characteristics have emerged or increased over time. This development has been particularly strong for those living in rented housing in childhood. More research to confirm and extend these findings in other settings, for other health outcomes and with other methodological approaches to disentangling between changes in direct and indirect effects, are needed. Our analyses of sibling intraclass correlations further confirm the conclusion that the associations of early lifecapturing shared genetic and social influences-with later life mortality has increased. The analyses further show that after adjustment for a wide range of observed childhood and achieved adult characteristics, the intraclass correlation remains mostly unchanged. Importantly, this finding indicates that the specific early life characteristics that we measure-characteristics that are typically also measured in earlier studies-do not fully capture the childhood characteristics that are important, nor do we fully understand the pathways though which attained adult characteristics mediate childhood influences on later life outcomes. Further research should make efforts to evaluate the contribution of unstudied childhood and adult social circumstances for these differentials, including hitherto poorly understood social and genetic influences. --- Methodological considerations From a methodological point of view this paper contributes in several ways. First, information on childhood and adult characteristics was drawn from census records and thus was not subject to recall bias (common problem with retrospective data) or loss to follow-up (common problem with prospective data). Second, our relatively large samples enabled us to study both total and cause-specific mortality and evaluate the changing contribution of adult characteristics on the mortality differentials by childhood conditions over time. Third, we had access to two samples representing two birth cohorts 25 years apart with harmonized measurement and design. The distributions of some of the childhood characteristics have changed between the two cohorts, making it challenging to compare point estimates between the samples. For example, in 1950, 90% of children had parents with primary education, whereas in 1975 this proportion was 46% (Table 1). Thus, our measures may differ across cohorts in their ability to differentiate between childhood circumstances. In the case of education, this distributional shift should have led to smaller differentials over time. Distributional change has been less or none for other social characteristics, and the results for these confirm our main conclusions. However, even if the distributions were similar across cohorts, their meaning may have changed. For example, around 10% of children lived in single-parent families in both cohorts, but in 1950 the single parents were more often widows whereas in 1975 they were divorced. To overcome these measurement concerns we also assessed the contribution of all observed and unobserved childhood circumstances to the variation in mid-life mortality. This was done by calculating a sibling correlation (intraclass correlation) and comparing this measure across cohorts. The observed increase in sibling correlation is in line with our main result that many of the observed childhood characteristics had stronger associations with mortality in the more recent cohort. In conclusion, regardless of rapid economic development in the latter part of the 20th century, we show that the associations of childhood socioeconomic characteristics and mid-life mortality are substantial. Whereas we show that these associations are mainly indirect, this does not undermine the importance of childhood circumstances as important early life course experiences that set individuals on a path of later life social achievement and health. We further show that the effects of childhood circumstances on mortality have grown for the more recent birth cohorts. To a large extent the increase in the contribution of childhood conditions on mid-life mortality is driven by ever stronger associations of childhood circumstances with alcohol-related, accidental and violent causes of death. --- Supplementary Data Supplementary data are available at IJE online. --- Conflict of Interest None declared.

3fdd90f9aa0fe1915834e10cea45178510febf96

The economics, culture and politics of hospital contributory schemes: The case of inter war Leeds.

In the immediate aftermath of the First World War, British voluntary hospitals faced a financial crisis which looked likely to jeopardise their independence from state control. 2 Inflation and the seeming inability of traditional sources of income to keep up with rising costs meant the hospitals needed a new and regular supply of funds -preferably one which kept local and national government out of their board rooms. The solution was found in the development of a range of contributory schemes designed to raise money from patients in return for more or less assured access to treatment, transforming the funding of hospitals in interwar Britain. 3 Based more or less on nineteenth century models of working class mutualism, the form of these schemes varied significantly from traditional Saturday and Sunday Fund collections 4 through workplace collections with representation on hospital committees; 5 city wide collection funds independent of the hospitals to contributory schemes based either on a hospital or group of hospitals or a locality. 6 Recent work by Steve Cherry and Gorsky, Mohan and Willis as well as the research by Doyle on Middlesbrough and Gosling on Bristol, 7 has helped to foreground the importance of these activities to the financial viability of interwar voluntary hospitals and has gone some way to open up the operation of these schemes to greater scrutiny and understanding. But their place in early twentieth century urban culture and the developing social systems of the working-class, especially the fate of mutualist organisations between the wars, remains under-researched. In general, mutualism has received less attention from labour historians of the inter war period than trade unionism, socialist organisations or the Labour party. 8 The mid to late nineteenth century is often posited as the high point of mutualism with the rise of craft unions, friendly societies, cooperative societies, building societies and a wide range of thrift organisations associated with mechanics institutes, penny banks and nonconformist churches. 9 However, historians have perceived a shift from the 1880s away from radical led self-help and mutualism towards more politically directed bodies targeting unskilled and excluded workers, underpinned by socialist ideals and looking increasingly to a statist response to social or economic problems. 10 As a result, the role of mutualism after the mid-1880s has been downplayed, squeezed by professionalised, bureaucratic organisations in education, housing or insurance 11 on the one hand and by calls for, and the implementation of, state responses on the other. While not characterised as an immediate or linear development, historians such as Martin Daunton and Pamela Graves have seen the interwar period as one in which workers abandoned their faith in mutualism and a fear of the state in their quest for universal, high quality welfare services. Indeed Daunton, has asserted that by the 1930s 'The proportions in the mixed economy of welfare had been reversed, and where there was a mismatch between voluntarism and the state, it was resolved decisively in favour of the latter'. 12 Similarly, the community, pan-class possibilities inherent in these mutualist organisations have been downplayed as historians, such as Mike Savage and Andy Miles, have emphasised increasing class segregation in the structure of civil society. In this model a combination of assertions of working class independence and middle class withdrawal saw

the leadership of urban social organisations pass to the workers as bourgeois cities became proletarian spheres. 13 Yet there has been little investigation of what happened to many of the locally based organisations which made up the self help world of the late nineteenth century city, and especially not of the workings of urban hospital contributory schemes. Their social, cultural and political make up has received limited attention from either historians of the working class or of the urban infrastructure and thus and we know very little about who joined, how the various types of schemes operated on a day to day basis and the extent to which they became politicised in the increasingly class ridden inter war years. 14 This is unusual as, by 1938, contributory scheme membership had reached about 11 million by 1942 making them a key element in working class strategies to minimise social risk. 15 However, the schemes have not gone unnoticed. Central to understanding their social, political and financial importance between the wars is the work of Martin Gorsky, John Mohan and Tim Willis, whose wide ranging monograph on the movement has provided a framework for their further study. Yet, while overall they accept that the contributory movement achieved a great deal in a relatively short space of time, did much to keep the voluntary hospitals afloat and facilitated some elementary rationalisation in local hospital systems, they are sceptical about the degree to which members really engaged with the activist opportunities of the schemes and the extent to which they built a pan-class base for an alternative to local or national state control. Indeed they suggest most members only joined for the promise of treatment and cared little about either the voluntary hospital system as a morally superior way to deliver hospital care or for the claims of men like Sheffield's Moses Humberstone who asserted that it was 'a great humanitarian effort', a movement and not an insurance scheme. 16 Broad and deep as their research is, it only scratches the surface of the schemes' everyday existence and activities. Indeed, they admit that 'the identities and motivations of … ordinary members are now impossible to retrieve' turning instead to the local leadership which must suffice for understanding the membership. 17 However, by drawing on a range of local records, including the annual reports, executive committee minutes and the pages of the members' own monthly magazine, this article will examine some of these themes through a case study of The Leeds and District Workpeople's Hospital Fund between 1887 and 1939. 18 It will pay particular attention to the development of the Fund, the growth of its membership, income and services to its members, the structure and activities of the grassroots organisations and the political positions adopted by various key figures associated with the organisation over the inter war period. 19 Overall, it will consider the extent to which the Fund continued to provide a space for a mutualist approach to social provision in which a pan-class alliance could exist to provide a community service separate from the state. Hospital provision in late nineteenth and early twentieth century England was divided between a public sector of poor law and municipal institutions and a smaller voluntary sector of general and specialist hospitals. 20 The public sector expanded from the 1860s as many more new workhouses included separate Infirmaries charged largely with the care of the elderly and the chronic sick while councils dealt with those who might pose a threat to the community, including the infectious and the mentally ill. Between the wars the public sector attempted to shake off its Victorian roots and to develop general services for the wider community. This process was facilitated by the 1929 Local Government Act which transferred responsibility for the poor law to local authorities and gave them the option to 'appropriate' the poor law hospitals as council run medical and surgical institutions. By the end of the 1930s the majority of big cities had followed this route and there is evidence that Doyle in some areas municipal provision was improving significantly. 21 Yet it still lacked the resources, skills and reputation of the voluntary hospitals. These acute general and specialist institutions, which provided just over one third of the beds, were at the forefront of the rapid developments in medicine which characterised the early twentieth century. However, they were also invariably short of money as their traditional sources of income -the philanthropic middle classes -were unable, on their own, to meet these new obligations. As the voluntary sector feared state funding and was wary of adopting a system of direct payment, they welcomed the development of contributory schemes which could provide large, regular payments while continuing to rely on the traditional givers to meet much of their capital requirements. 22 These contributory schemes emerged out of nineteenth century working class organisation which sought to minimise the risks of modern capitalist life through collective or mutual pooling of resources. They included, as noted, trade unions, especially those of the skilled workers, the co-operative movement, friendly societies, various forms of thrift organisations such as burial clubs, sick clubs and even Christmas clubs, often associated with churches and chapels. 23 Although the latter largely disappeared after the welfare legislation of the Edwardian era and the disruptions of the First World War, trades unions, the co-op movement and even friendly societies flourished between the wars. As with the contributory schemes, debates remain about whether these organisations retained the commitment of their membership or if the relationship had become largely functional or whether mutualism had become redundant with the advent of state welfare. 24 It is thus within these contexts that mutualist hospital contributory schemes emerged in the late nineteenth century and came to play such a prominent part in the hospital economics and culture of the inter-war period. --- The Leeds Workpeople's Hospital Fund The Leeds Workpeople's Hospital Fund came into operation at the end of 1886 on the initiative of Alderman Fred Spark, a mid-century Radical Liberal and editor of the radical Leeds Express. 25 Spark was a central figure in working class organisations in the city and had secured a position on the Board of Leeds General Infirmary representing workers' interests. The Fund aimed to develop an effective means of mobilising workers' contributions to the hospitals in a more organised way through a regular contribution of 1d a week. It would replace the existing ad hoc arrangements including Saturday and Sunday Funds and other forms of collection at works which provided just under £2000 a year to the Infirmary. Spark worked with the key mutualist organisations -such as the trade unions, friendly societies and Jewish representatives -to set up the organisation and develop a local management structure whilst the first meeting was held at the Cooperative Hall. 26 The link between these organisations is very important -not just through Spark's personal role but also those of a range of other activists -and it is a feature which has been underestimated in much of the discussion of contributory societies and workers' funds. Indeed, it would seem that this embedding within the mutualist sub-culture was the key to the success of the Leeds organisation both in its formation and continued growth between the wars. Within a year there were ward organisations, a central committee with Executive and hundreds of subscribers both in workshops and as individuals. The initial membership was based on male industries such as metal working, engineering and railways, yet from the beginning the Fund recognised the need to mobilise the greatest number of potential members and courted both women workers -of which there were thousands in north Leeds -and the tailoring trades more generally. 27 Indeed there was a conscious decision to incorporate the 'Jewish shops' from the very start and to overcome potential prejudices, the Executive complaining vociferously about discriminatory treatment received by Jewish patients at the Public Dispensary, leading to the dismissal of a porter. 28 Ward committees were formed to create democratic structures which would engage members with the Fund, promote localised fundraising, provide a means for independent and home workers to contribute to the fund and generally raise its profile in the city. Early members and activists were drawn heavily from the Lib-Lab and Radical Liberal communities, such as Henry Maundrill in East Ward, along with community leaders like Joseph Kavanagh, representative of the Irish and Sigismund Ash from the city's Jewish community. 29 In the pre Great War period the patterns of local fund raising -beyond the collection of subscriptions from the works -took shape and came to include the organisation of collections in pubs and clubs, incentivised by competitions for Emblems for the pubs and prizes for the collectors. 30 Local committees were also active in promoting concerts in public parks during the summer. These were so significant that the Executive decided to buy music stands and music for the local committees to ease the costs of these popular events. 31 A crisis arose in the early Edwardian period when the City Council made a bid to restrict or even ban concerts in the public parks after accusations of rowdiness and complaints from the churches that they were offering too much of an alternative attraction on a Sunday evening. Following representations from, amongst others, Spark who emphasised the important charitable purpose of the concerts, the Council backed down and the concert programme continued. 32 Less successful was the decision of the executive to buy automatic collecting boxes which attracted limited contributions but the continuous attention of thieves and vandals. Alongside these local activities -which included carnivals and other public events such as a football match featuring the local pantomime troupe in costume 33 -was the Leeds Hospital Gala, a large scale event which was held annually on August Bank Holiday Monday and Tuesday from 1887 to 1939 at Roundhay Park -a large public park provided free of charge by the Corporation. 34 It received extensive coverage in the local press, especially following the death of one of the performers, Professor Higgins, a balloon artist, whose act went fatally awry in 1891. 35 The Gala proved to be both an effective profile raising activity and a financial success, contributing almost 10% of income within a couple of years and continuing as an important money spinner throughout the Victorian and Edwardian eras. 36 Thus, by the outbreak of the First World War the sources and approximate distribution of income was as in Table 1, with around three quarters of income coming from the workshop collections, substantial contributions from pub collections and the Gala (though this could be very erratic due to the weather) and a range of smaller events bringing in around £1000 but serving an important purpose in engaging a wide range of people in income generating activities for the Fund. The income raised by the contributors and the committee, which rose from £1800 in the first year to almost £14,000 by the outbreak of the First World War, was assigned to a growing number of activities. Initially the key focus was to support the hospitals and this remained the main purpose until the formation of the NHS. Given the origin of the Fund in a discussion at the Leeds General Infirmary (LGI) of ways to mobilise workers' contributions, it received the lion's share of the income raised by the Fund. Thus, in the first few years following the removal of a small administration charge of around 5-6%, the income was divided 82% to LGI, 10% to the Dispensary and 8% to the Women and Children's Hospital, which by 1890 was equivalent to around £4,300, £500 and £400. 37 In recognition of their contributions, the new Fund was allocated 20 workman governors at LGI and 10 at the Leeds Public Dispensary and by 1914 the Fund had a representative on the Boards of the LGI, the Hospital for Women and Children, the Public Dispensary, the District Nurses Association, Leeds TB Association, and a place on the Board, the Election Committee and the General Committee of the Maternity Hospital. 38 This increased representation reflected changes in the direction of funding. In the 1890s the Fund developed a significant convalescent system which by the First World War included a home for men in Horsforth and one for women in Ilkley, Derbyshire. This was a major undertaking with over 2000 admissions in 1913 -1300 men and 770 women -with the committee recognising the need to expand the provision for women. 39 The convalescent homes were costing over £4000 a year to run by this time, a sizeable proportion of the income of £13,000-14,000 per annum, and given the Fund had employed a general secretary in 1897 and had further diversified the recipients of support from the Fund to 10 institutions, the proportion allocated to the LGI fell significantly. Thus, by 1913 it received just £5,250 of the £13,250 income, around 40% of the Fund's total income and not much more than the convalescent homes. 40 As this suggests the convalescent activity had become a central concern of the fund in the early twentieth century. However, this shift to investing heavily in convalescence was causing tension with the Hospitals. For example, when, in 1914, the Fund stated it was planning to spend a substantial sum on improving the convalescence provision for women the representative of the Infirmary attending the AGM, Charles Lupton, stated 'He noticed, with some sorrow, that one of their Homes was so popular that they were wishing to increase the accommodation. He had hoped that the Infirmary would have been regarded as so popular that they would have wished to increase their donation to that institution'. 41 Thus, it is clear that the LWHF was a mutualist organisation which owed much to the central tenets of the mid-nineteenth century radical liberalism and Lib-Labism of Leeds. 42 But it also owed much to a deep rooted view of independence and collective support bound up in Spark's attack on National Insurance at the 1913 AGM: When they came to consider that the working men of Leeds had to pay by forced payment 4d per week out of their incomes [for the new National Insurance cover], and, in addition, were voluntarily giving a penny per week to the Fund, they must all agree it is very creditable. He ventured to think that the penny paid to the Fund was worth more to the working man in personal benefit than the fourpence which he was taxed. 43 That such organisations existed in pre-war Britain is widely acknowledged -the question is to what extent did they survive operationally and ideologically between the wars? --- Inter war Income Not only did the Leeds Workpeople's Hospital Fund survive into the interwar period, it positively flourished as a source of income for the city's hospitals and as a means of providing access, free at the point of delivery, for Fund members. The income of the Fund witnessed an impressive increase of over fourfold between 1918 and 1938, from £22,000 to £98,000. However, this increase was not straightforward as income grew only slowly during the 1920s, largely due to very poor economic conditions in the city's traditional industries. 44 Yet despite the impact of the great depression, which was severe on the engineering and textile sectors, 45 the Fund's income increased rapidly in the 1930s, more than doubling between 1930 and 1938 to reach almost £100,000. This major improvement was secured without the introduction of any significant new category of income; the sources changing little between the wars (see Fig. 1). The main changes were in the workplace scheme where, in 1919, the base contribution was raised to 2d per week and in 1930 when a contributory scheme was commenced. 46 The contributory scheme protected income in the early 1930s and probably helped to incorporate new members, including large numbers of women in the clothing industry such as the 8000 who contributed from Montague Burton's, along with support from offices and to a lesser extent retailing, reflecting the changing character of the Leeds economy and demand for hospital treatment. 47 The key aim of the contributory scheme was to concentrate all workplace collecting in the LWHF scheme to make it more efficient and regular through 'the withdrawal of all casual collections and, by arrangement with the Hospitals, the discontinuance of all collections in works for individual hospitals'. 48 Its success was measured both in terms of the huge growth in income and in membership which had reached 150,000 by March 1932. 49 Part of this growth was also associated with the expansion of the Scheme into the suburbs, especially to the east and south east in places like Morley so that in 1933 the name was changed to the Leeds and District Workpeople's Fund. 50 The launch of the contributory scheme caused some problems with the local medical profession who were worried that, in trying to mobilise middle class supporters for the scheme, this would allow those who should really pay for private treatment to gain access to subsidised care in the hospitals. 51 When addressing the AGM, the Lord Mayor, the Liberal Dr Hawkyard, noted his disquiet with the new method of collection, stating 'there were one or two things in it which he did not quite agree with'. 52 However, others at the AGM supported the development, Charles Lupton of the LGI assuring Dr Hawkyard that he had questioned the Fund on 'whether free hospital treatment was going to be available for those contributors who could well afford to pay doctor's fees and nursing home charges' and confirmed that the Fund would only send those who were a 'proper subject for voluntary hospital treatment' whilst the Hon. Sec., James Tate, reassured the Mayor that the scheme was 'designed for the necessary purpose of increasing our income' and that he was 'quite confident it will not be abused'. 53 Although the works' contributions were always the dominant element in fundraising the proportion drawn from this source varied from 75-95% of income over the course of the interwar period. Workplace contributions were at their lowest in the first few years of the post war period when collections from pubs and clubs and income from the Gala were both significant (Fig. 2). Similarly, ward income (from additional collections and fundraising activities) peaked in the early twenties then fell sharply from 1929, largely due to the incorporation of part of their income in the new contributory scheme. The Gala was also strong in the early 1920s, although this was always dependent upon the weather -as were many of the ward fundraising activities -with one or two years completely washed out. 54 This notwithstanding, Gala income was fairly consistent throughout the 1920s but it then fell sharply in the 1930s. The proceeds from pubs and clubs were closely linked to male tertiary disposable income, seeing a peak in 1920 during an era of rapid wage inflation, but then falling very sharply due to the appearance of large scale unemployment in areas like engineering and as a result of the general strike and the related lengthy coal strike. 55 However, unlike the other forms of income, pub and club collections were rising again towards the end of the 1930s, largely as a result of a renewed period of wage inflation. Overall, from 1930 worker contributions were the main source of income for the Fund, suggesting that from this point the movement had become an insurance scheme -though conceivably one in which the members took a greater interest than, for example, their engagement with the Prudential. 56 --- Interwar Expenditure As the sources of income for the Fund became more concentrated and the relationship between member and Fund more 'commercial' the range of organisations assisted and 'products' offered increased substantially. Thus the key features of the interwar period were the expansion of the services offered by the Fund; the extension of the range of organisations and hospitals benefitting from grants; and the significant decline in the importance of the convalescent homes within the mix of services offered. The Leeds General Infirmary remained the main beneficiary, given its role in the foundation of the Fund, but other institutions also benefitted through a significant growth in cash grants. The Public Dispensary, the Hospital for Women and Children (HWC) and the Leeds Maternity Hospital each secured more of the income and together, the four other hospitals (including the Jewish Hospital) and the Leeds Nursing Association received over £20,000 by the outbreak of the Second World War (Fig. 3). This distribution reflected the greater diversity of the membership, especially the contribution made by women workers, with the result that Leeds Maternity Hospital (which drew most of its income from the Fund) was the largest voluntary maternity institution in the country, delivering 45% of the babies born in the city by 1938. 57 Increased grants to the Nursing associations similarly reflected the spatial extension of the Fund to the outer suburbs and satellite villages. 58 Moreover, services to members grew. Thus, although dental provision had been present before the First World War, 59 it expanded greatly, especially in the 1930s. Support consisted mainly of grants towards the purchase of dentures, the patient paying the first 30 shillings, with the result that grants rose from just £150 in 1918 to over £3,200 by 1938. PT Leigh, President of the Fund at the end of the 1930s and the initiator of the Dental Hospital in Leeds, joked that in the early days they had more staff than patients but that the interest in dentistry reflected growing health consciousness amongst the population. 60 Provision was further diversified with the development of an ambulance service introduced in 1926 to bring in-patients, to and from their homes. 61 As membership expanded outside the city, partnerships were formed with ambulance services in the townships, for example at Morley, Guisley, Otley and Kippax by 1935. 62 Both the cost and the popularity of the service began to rise rapidly in the early 1930s with the fleet of ambulances conveying over 7000 patients by the end of the decade. 63 In a similar vein to the dental benefit were schemes to provide massage therapy and access to the Royal Bath Hospital, Harrogate for rheumatism suffers. 64 Furthermore, by the end of the decade the Fund was operating reciprocal arrangements with 48 hospitals across the UK with almost 500 members treated outside Leeds. This was an important development for, as Gorsky, et al have shown, this proved to be a particularly complex issue for contributory schemes to manage in this period. 65 However, more important than these innovations was the growing relationship with the municipal hospitals which began in 1931 when a deal was agreed with the Public Assistance Committee (Leeds did not appropriate its hospitals until 1933) to treat Fund members and their dependents at St James' and St Mary's. 66 There was, however, some scepticism amongst the voluntary hospital leadership about the arrangement which involved 350 patients in the first year. The Tory Alderman George Martin -chairman of the Municipal Health Committee -noted that on average patients spent three times as long at the PAC hospitals than at LGI, suggesting that the deal might impose a considerable cost on the Fund. 67 However, this was dealt with by the PAC/Municipal Hospitals only admitting patients who would have been eligible for voluntary hospital treatment and excluding 'Tuberculosis, Mental and Chronic Care cases' from as early as 1931. 68 Yet, over 5000 members and dependents were being treated by the end of the decade, an equivalent number to those treated in the LGI. 69 The expansion of this element of the Fund's work was stimulated by the chronic waiting lists at the LGI which meant members often had to wait months for treatment. However, if they wanted to make use of the municipal hospital, St James's, they were required to pay, and rightly they objected to 'paying twice' and demanded the cost of their treatment was covered by the Fund. The significant expansion in the numbers treated also reflected the upgrading of services at St James's and the marked improvement in relations between the voluntary and municipal sectors after 1935. 70 On the other hand the contribution of the convalescent service -central to the Edwardian Fund -declined. From the mid-1920s the number of patients sent to the homes stagnated at around 1,000 per annum, with a slight surplus of women over men. 71 As a result, the cost remained flat and proportionately declined whilst the homes saw no significant investment in new buildings. This was a surprising development given that from the late 1890s up to the early 1920s it had been such a major part, if not the main work of the Fund. When the homes were first opened, Fred Spark noted that they signified the maturity of the Fund which rather than simply making grants 'wanted to be absolute managers of something'. 72 This tradition was maintained by Sir William Middlebrook, Liberal MP and President of the Fund during the 1920s, who stated on a number of occasions that the homes were a principle and even 'the primary object' of the Fund. 73 This view was not shared by the hospitals, with Lupton of the LGI noting in early 1932 that he was pleased that they had kept up grants to the hospitals, for though the convalescent homes did 'splendid' work, he felt there 'could be no doubt that the first charge upon their generosity was the need of the hospitals of the city.' 74 Thus, between the wars patterns of Fund expenditure became more complex as they focused on securing access to a diverse range of hospital treatments for their members, rather than on creating and running their own services like the convalescent homes. Moreover, the growing breadth of hospital services was clearly reflected in the spread of the grants, whilst the more sophisticated demands of the members -through the take up of dental services for example -and the widening spread of the Fund -through the ambulance service -complimented the rising standard of and demand for medical attention most obviously seen in the growth of births at the maternity hospital. 75 Indeed, those associated with the Fund took the opportunity of the AGM to reflect on the growth in demand for treatment in hospital, Charles Lupton suggesting that it was 'testimony to the increased belief in hospitals that grew up during the War' whilst the Labour Mayor, John Arnott noted a similar change in attitude, contending that in the past people 'did not believe in hospitals, but to-day that was all changed, and the work done in the hospitals was honoured and admired.' 76 Moreover, the wider range of services provided reflected demand created by the changing membership body. No longer was the Fund dominated by male manual workers from the engineering shops south of the river, but increasingly from men and women from across the Leeds district who expected a wider range of benefits than simply care and recuperation. --- Membership and Activism The Leeds Workpeople's Hospital Fund was a very successful organisation which saw its membership on a continuous upward curve, reaching almost 200,000 by the outbreak of the Second World War. As has been argued, especially by Gorsky et al, the overwhelming majority of these members took no interest in the organisation of the Fund beyond paying their dues. 77 On the face of it the organisational work and the engagement with the political and cultural objectives of the LWHF were restricted to a relatively small group of activists whilst the rest treated it as another form of insurance. 78 Yet this view may not be entirely fair and there is evidence of a broader support for the movement in a limited and occasional form by a much wider body of people demonstrated through their attendance at Fund events or their casual contributions through their social and recreational clubs and associations (see Figs 1 and2 above). This association with the Fund resembled workers' other mutualist engagements whether as members of the Cooperative Society -which had over 100,000 members in the city by the 1930s, most of whom used it as a cheap sources of basic groceries -or even as trade unionists, the vast majority of whom played little or no part in the day to day activities of their lodge. However, it is possible to identify some of the organisations and people involved in supporting this vital plank in the working class support structures of Leeds. --- Doyle It is true that identifying the background of even a few of the local members is very difficult, however this research points to a wide range of interests participating in the grass roots of the Leeds Fund. In broad terms membership covered a diversity of work places from mining and iron working through textiles, engineering and clothing, to local government and administration. 79 As noted earlier, this included a significant proportion of the female working population, unusually for this type of scheme in the north where women tended only to belong as dependents. 80 This presence was manifested to some extent in women's involvement in the local leadership of the Fund and as we have seen in the kind of services provided. 81 However, despite many attempts to engage shop workers, retailing -with the exception of the Co-op -was not widely represented, though prior to the setting up of the contributory scheme shopkeepers in certain areas did club together to undertake collections, the North East Ward Shopkeepers donating £13 in the summer of 1928. Moreover, despite criticism to the contrary, some of the multiple stores, including Maypole Dairy and Woolworth were organising collections before the switch to the contributory scheme. 82 Although individual contributors subscribing through their place of work were the mainstay of the movement, a range of other organisations and activities were also involved in maintaining both the income and vitality of the Fund. For example, a great many clubs were represented in the subscriber lists until the 1930s, including the by then rather quaint North West Ward Tariff Reform Club which donated £2 in the summer of 1928. 83 Even in 1932 the North East Ward had significant collections from both the Conservative Club and the Labour Club. More surprisingly the list of collections from the East ward the same year included entries for the United Irish Democrats next to that of the East Ward Conservatives and the East Ward Liberals -though not on this occasion the Labour Club. 84 Whilst political clubs were important, they were supported by a range of working men's clubs, such as those at Meanwood and Beeston, British Legions like that in Middleton, the RAOB and the Forresters Institute or the East Leeds National Railway Union Club whilst various sporting clubs supported the events organised by the wards, such as Kirkstall's annual fishing competition. 85 Leadership varied but could be very wide ranging. In city centre, Brunswick ward the president in 1931 was the local Conservative Alderman, PT Leigh, who later served as president of the Fund, whilst the Vice Presidents included his wife, also a Conservative councillor in the ward. They were supported on the committee by Vice Chair Mrs Joe Cohen and George Kelly, a leading member of the Ancient Order of Forresters Friendly Society from an Irish background, whilst the secretary was JC Sanderson, a vocal proponent of the working class identity of the movement from a Liberal heritage. In the Labour heartland of North-East Ward, the Conservative Councillor, J.W. Hemmingway, was president and a prominent supporter of the movement, providing prizes of gold watches for the pub collectors. North-west Ward elected a woman as its representative worker governor. In socialist East Hunslet a prominent local Liberal was Vice President whilst in New Wortley the President was a Labour councillor. 86 It is possible that Liberals remained disproportionately active in the movement, whilst in some areas the organisation was increasingly run by Conservatives, especially in the city centre and the north and west of the borough. Yet partisanship seems to have been rare, with all mainstream political subcultures associating themselves with the Fund either at the level of activist involvement or pub and club collection competitions. It is conceivable that local politicians and parties even used the Fund as part of a banal form of political promotion which allowed them publicity all year round. Certainly for many it was an appropriate venue in which to undertake important community based activity to demonstrate their commitment to the interests of the population of the ward. --- Doyle Activism and engagement was also demonstrated by support for the income generating activities of the Fund at the local and city level. The main event in the calendar was the Gala which continued to be held annually in Roundhay Park over August Bank Holiday Monday and Tuesday with a programme which combined sporting events with spectacle. 87 The day could attract some prominent sports people, such as the Huddersfield based Olympic athlete Tom Matthewman who competed from 1924 onwards. These athletes competed for substantial cash prizes in the 1920s in both foot racing and cycling whilst attendees were also entertained by a range of comedic and spectacular acts including aerial acrobatics, tumblers and other circus acts, jugglers and western style riding. 88 However, the Gala gradually lost its appeal. Attendances in the early twenties were usually over 40,000 for the Monday and over 10,000 for the Tuesday, with 1920 seeing almost 70,000 pass through the turnstiles. By 1930, however, attendances had fallen to nearly half that figure, numbering around 25-30,000 for the Monday and just 5-7000 for the Tuesday. 89 Even the stock attraction of the hot air balloon with its parachute descents had paled by this time as local people increasingly left town on bank holidays for the coast or the country and fewer people were attracted to an increasingly unsophisticated day out. 90 The Gala was suspended for the Second World War but never reinstated. Yet despite that, over the course of the interwar period over three quarters of a million people attended an event organised for and promoting the Fund. Whether this was a positive affirmation of the actions of the Fund or just a day out cannot be established -but it does suggest something about both the depth of organisation the Fund was still able to draw upon until the end of the thirties and of the pool of good will which existed in the city. At ward level there were a range of small scale fundraising activities which collectively maintained the profile of the Fund on the ground and contributed a few thousand pounds to the coffers. Very much of the age were the whist drives and dances (including fancy dress events) which occupied the committees in the winter months, often held in the political clubs of the wards and bringing together a few dozen members. 91 These were aimed specifically at the active members and served to cement a collective social culture and reward the efforts of the collectors as well as possibly act as a way of recruiting new activists. In addition there were a number of community events, usually in the summer, such as the annual carnivals run in the suburban areas with varying degrees of success. In the case of Bramley ward this may account for their large women's committee which seemed to consist of the daughters of the leading activists. In Kirkstall there was an annual Angling contest -again with its own committee -whilst across the city there was a bowls cup held every summer. 92 On the other hand the later 1920s saw the decline of the public park band concerts, a mainstay of early fundraising but largely abandoned by most wards by 1930. Around a dozen concerts were still held over the summer months but takings were rarely significant and many were affected by the poor weather leading the Secretary to comment in 1932 that: Band performances in the Parks of the City appear to be no longer an attraction to the Public, and in consequence are a dwindling source of revenue to the Fund. Ward committee efforts in other directions have, however, met with favourable responses. 93 In some cases these were replaced with either sacred concerts or organ concerts indoors, especially in cinemas on Sunday evenings. However, this could prove problematic prior to 1932 as local by-laws prohibited the selling of tickets at the venue on the night. 94 Thus, the committees in the wards did attempt to keep up to date in their fundraising methods, though their effects were probably more propagandistic and morale boosting than particularly beneficial to the coffers of the Fund. Indeed in most cases the Pubs and Clubs were the mainstay of ward collections and the focus of much of their communal activity as special meetings were held to celebrate the most successful and award prizes to venues and Doyle Page 10 Labour Hist Rev. Author manuscript; available in PMC 2014 January 06. --- Europe PMC Funders Author Manuscripts Europe PMC Funders Author Manuscripts collectors. These were an opportunity for a bit of fun for members in contrast to the dry annual meeting or the hard work of fund raising. 95 Overall the local organisation demonstrated a broad range of interests and activities. There were few ethnic, religious, political or social divisions. Drawing on a wide range of aspects of working class popular culture from the thrift organisations of the nineteenth century; the premises of the free church community; and the pastimes of the working man (and woman) -whether uplifting, for example fishing or bowls; bucolic, like the May Carnival; or traditional, such as the pub and club -the local efforts of the Fund suggest a commitment which helped to hold back the march of class and state. --- Ideological Battles Yet for all that there were some ideological battles within the movement. For whilst it may have been capable of maintaining a broad church in terms of support, it does not mean everyone understood the movement in the same way. There were broadly three positions articulated in various forums. The first was the voluntarist position, held to most strongly by the large number of Conservative activists involved in the Fund at various levels and who became increasingly prominent in the broader voluntary hospital culture of the city. People like Charles Lupton, PT Leigh, Noel Whittaker, and especially Sir George Martin, used the meetings of the Fund to champion the voluntary system, attack state control and link the Fund to the preservation of the voluntary hospital system. 96 Thus, in February 1930, in a characteristic assault prompted by the introduction of the Local Government Act, Martin asserted that: He regarded the Fund as a sort of bulwark against the municipal control of the voluntary hospitals of the city. However excellent municipal control might be, however painstaking, he was satisfied it would not be to the advantage of the hospitals to come under the municipality. It would be a very bad day for those who required the help and beneficent care which a hospital could give when such institutions were regulated and controlled by the municipality. (Applause). 97 Such views could be multiplied across a number of speakers both representing the Fund and other medical charities in the city. Admittedly many of them spoke favourably of the potential for cooperation -though even here Martin was sceptical in the early 1930s -but most saw this as an arms-length relationship rather than a positive development to be actively pursued. 98 Second, there were those who took the view that the Fund represented a democratic response to the crisis of the hospitals between the wars and that it was the working man who had saved voluntarism. In this context, the voluntary system had an obligation to work closely with the municipal sector to secure the best hospital care for the community. These views were usually put forward by visiting Labour Mayors, including the middle class figures of D B Foster 99 and John Badlay. The latter, who claimed to have attended meetings as an ordinary member, suggested that This Fund has had an effect upon our social life altogether apart from the financial side. I am convinced that it has led to the formation of independence of character on the part of the people who have helped to carry on this work. When men now go to the Infirmary they don't go timidly to the back door, they go there as a right, feeling that they have paid for what they are going to get and have assisted others to obtain the same services. (Applause). 100 But it was not just the visiting dignitaries who asserted this line. Towards the end of the period ordinary committee members became more vocal, and in particular, J C Sanderson took an independent line on a number of occasions, asserting in 1938 that: It was obvious that had it not been for the working people of the city the voluntary hospitals would have been in a very bad way in the last ten years … [as well as] … paying a warm tribute to the efficiency of the medical work and the nursing at St James's Hospital, he said that the Workpeople's Hospital Fund had done a great service for the people of Leeds when they made arrangements for the patients to be received and treated at that institution. 101 Third was the traditional radical Liberal view which encapsulated the original aims and ambitions of the movement but was increasingly marginalised by the later 1930s in the shadow boxing over voluntary or state provision. Given the large number of Liberals involved in the organisation at a local level, this position may have been more widely held than articulated but it did receive a full exposition from the Liberal Lord Mayor, Charles Boyle, at the AGM early in 1940. He mused on the early history of the Fund, noting: Some men in Leeds got together and said the position was not good enough for them, and that they desired, as Englishmen, to be independent of charity in their medical services. The result of such a feeling was the wonderful one of raising today something like £100,000 a year from the workers of the city in support of medical charities. But, although that was good, they had not got full independence yet. They still had to rely to some extent upon the State and upon charities, which was a thing Englishmen abominated. He hoped that some day, perhaps not far distant, they would pay every penny of the cost of medical services in the City, which would, indeed, be a great achievement. 102 --- Conclusion Although Boyle's clear articulation of the independent, mutualist position may have owed something to a war setting in which the essence of Englishness was often being evoked, it also summed up a view which has been largely written out of the inter war history of the movement. Mutualism rather than voluntarism, was still widespread in mid-twentieth century Britain -evident in Friendly Societies, the Co-op, Trade Unions, and hospital contributory schemes. 103 Although they were from the working class these ideas and organisations were not exclusive to them. They were pan class, communitarian, democratic and often still an essential support to daily life. As Labour Lord Mayor, John Arnott pointed out in 1925, they were 'in the nature of a mutual insurance, an effort to pool resources, so that a person who did suffer from misfortune should have not only his own personal provision to help him in need, but that of his fellows who cooperated to help him.' 104 All such organisations offered a form of insurance or pooling of risk which may have owed little to overtly political considerations but suggests more than simply a commercial transaction. They were born out of a need to use self-help to gain access to scarce or privileged resources and to prepare for the inevitable costs of sickness, accident and old age. As such, these institutions promoted independence from patronage as well as want. The Leeds Workpeople's Hospital Fund was phenomenally successful in increasing income, supporting the hospital system, promoting integration and efficiency and mobilising thousands of people to act as citizens sustaining the fabric of their city. However, it was able to do this because of its roots in nineteenth century radical liberalism and nascent working class organisation. It was temporally contingent, an artefact of its time. Certainly the slow decay of its fundraising wing suggests that its ability to mobilise may have been on the wane, whilst the resistance of the hospitals to an increase in their role on the boards may have put a block on further development. 105 Yet the Fund retained a strong financial base into the forties and may even have benefitted from the growth in tertiary expenditure which characterised the post war period. 106 The Leeds Workpeople's Hospital Fund continued to hold the respect and attract the pennies of hundreds of thousands of people. It therefore provides clear evidence that mutualism in health care provision was still very healthy up to the mid twentieth century and could have formed part of a mixed economy response to future provision as it did in France and Germany.

60cc3223818114d5e943442212e5d12392ec09d0

Modern contraceptive use among HIV-infected women attending HIV care centres in Togo: a cross-sectional study

Introduction Contraceptive use among HIV-infected women in Togo is poorly documented. We aim at assessing the prevalence of modern contraceptive use and associated factors among HIV-infected women in Togo. Design Cross-sectional study. setting The study was conducted in five HIV care centres in the Centrale and Kara regions in Togo. Participants We included 461 HIV-positive women aged between 15 and 49 years and who were sexually active. Main outcome measure The outcome variable was HIVinfected women who were using modern contraceptive methods. results A total of 461 HIV-infected women were interviewed, with an average age of 34.3 (±7.1). Among them, 332 (73.1%) women reported using contraceptive methods, mostly condom alone (74.7%) or in combination with hormonal contraceptive (16.9%). In multivariate analysis, education level (primary: adjusted OR (aOR)=1.99, 95% CI (1.05 to 3.76); secondary level and higher: aOR=3.95, 95% CI (2.03 to 7.67)), WHO clinical stage (stage II: aOR=0.7, 95% CI (0.37 to 1.33)), follow-up in private care facilities (aOR=2.54, 95% CI (1.22 to 5.29)) and having a child (aOR=2.51, 95% CI (1.41 to 4.5)) were associated with higher contraceptive use, while marital status (living in union: aOR=0.45, 95% CI (0.28 to 0.74)) and WHO stages III and IV (aOR=0.47, 95% CI (0.24 to 0.94)) were associated with lower contraceptive use. Conclusion About three-quarters of sexually active HIV-infected women in Togo were using contraceptive methods, and private health facilities favoured this contraceptive use. It is important to strengthen the implementation of interventions to increase the incentives for HIV-infected women to use contraception in Togo.

bACkgrounD Although there has been a reduction in new infections of HIV of about 41% between 2000 and 2015, HIV infection continues to be a public health problem in Sub-Saharan Africa, where 25.6 million people lived with HIV. Women of reproductive age account for about two-thirds of them. 1 The decline in the incidence of HIV infection is the effect of multiple interventions implemented to prevent HIV transmission among heterosexual and especially from mother-to-child HIV transmission. About 66 000 children under 14 years were reported to be newly infected by HIV in Western and Central Africa at the end of 2015. 2 Most of these infections could have been prevented by antiretroviral therapy (ART) during pregnancy and more by contraceptive use among HIV-infected women, which is the fourth component of preventing mother-to-child transmission (PMTCT). In 2005, Reynolds et al 3 estimated that the level of contraceptive use could prevent over 173 000 unintended HIV-infected births each year in Sub-Saharan Africa. Indeed, family planning showed numerous benefits for HIV-infected women, such as the reduction of morbidity and mortality due to pregnancy and also the improvement of health of HIV-infected women by reducing unintended pregnancies. Therefore family planning contributes to PMTCT of HIV. 4 The strengths and limitations of this study ► The use of contraceptives such as condoms could provide dual protection against acquisition or transmission of sexually transmitted infections, including HIV. ► This study is one of the first studies in Togo focusing its interest on the contraceptive use among HIVpositive women. ► Education level, marital status, AIDS clinical stage, type of health centre and having children had influenced the use of contraceptive methods among HIVinfected women. ► It is suggested that caregivers should integrate family planning services in HIV care during follow-up visits. ► Finally, we relied on self-reported reproductive health behaviour through a face-to-face interview, which may introduce information bias. Open Access use of contraceptives, mainly male and female condoms, could provide dual protection. It could protect against acquisition or transmission of sexually transmitted infections, including HIV. 5 6 However, in Sub-Saharan Africa, given the progress in PMTCT with the expansion of ART, most of the HIV-infected women still have desire to have children, 7 8 and the prevalence of contraceptive use varies according to the studies. In Western Africa, the use of contraceptive methods is not effective in HIV-infected women. [9][10][11] In Ghana, a study showed that only 42.6% of HIV-infected women used modern contraceptive methods at Komfo Anokye Teaching Hospital in 2012, 11 while in eastern Nigeria it was reported that 73.1% of HIV-infected women were using modern contraceptives in the same period. 10 In many studies conducted in Sub-Saharan Africa, the reported factors influencing the use of contraceptive among HIV-positive women were sociodemographic characteristics (age, education, marital status), reproductive characteristics (desire to have children, number of children), being on ART and knowledge of the partner's HIV status. [9][10][11][12][13][14] In 2015, Togo had about 110 000 people living with HIV and AIDS (PLWHA), including 59 000 women aged more than 15 years old and 9000 children aged 0-14 years. 15 In addition, the prevalence of HIV infection is almost twice higher among women than men (3.1% vs 1.7%). 16 HIV prevalence among women attending antenatal consultation in Togo was 2% in 2015. 17 In women of reproductive age, the prevalence of contraceptive use was estimated at 22% for all methods (16% for modern methods) in 2013-2014. 16 However, contraceptive use among HIV-infected women in Togo is poorly documented. This study aims at assessing the prevalence of contraceptive use, as well as individual and structural factors that influenced the use of contraceptives among HIV-infected women enrolled in HIV care centres in two health regions in Togo. --- MethoDs study design This was a cross-sectional study conducted in two health regions in Togo (Centrale and Kara regions) over a period of 4 months from May to August 2016. The study targeted HIV-positive women of reproductive age (15-49 years) and who were sexually active. setting and study population Centrale and Kara regions are two of the six health regions in Togo located, respectively, about 350 km and 420 km from the capital Lomé. These two regions are characterised by important seasonal arrival of populations (from the other health regions, and sometimes from outside of the country (Togo)) during cultural and traditional events, increasing the risks of HIV transmission. In 2013, the prevalence of HIV infection was estimated at 2.2% in the Centrale region and 1.8% in the Kara region. 16 There were 30 accredited medical centres in the two regions to provide healthcare to about 10 361 PLWHA, including 616 children, enrolled and followed up in these centres. 17 Women were eligible to participate in the study if they (1) were aged between 15 and 49 years old, (2) had a sexual partner within the last 6 months and (3) were enrolled in the selected centres for active ART. sampling First, a random probability sampling proportional to the number of patients in the active file of the 30 HIV care centres in the two regions was carried out to ensure representative centres with a high number of PLWHA. In a minimalist scenario, it is assumed that a sample of 15% of HIV care centres should be representative of all the centres. This led to the random selection of five HIV care centres for the implementation of this study. Then, a non-probabilistic, convenience sampling was carried out. Indeed, in these five selected HIV care centres, it was proposed to enrol any PLWHA who consulted for a follow-up from May to August 2016, who met the inclusion criteria and who consented to participate in the study. The prevalence of the use of at least one contraceptive method was assumed to be 50% with the precision of 5% and 20% refusal or incomplete data. Based on this assumption, the sample size was estimated at 461 HIV-infected women. --- Data collection Data collection was done using a standardised questionnaire in French, explained in the local language for participants if needed. The questionnaires were filled by the health workers. The questionnaire included sociodemographic information, clinical features, information on ART, sexual activity status, and knowledge on contraceptives and their use. Data on HIV status disclosure to the sexual partner were also collected among PLWHA. We defined modern contraception as the use of one of the following methods: sterilisation, condoms, contraceptive pill/oral contraceptives, intrauterine device, diaphragm, injection, emergency contraception or implant. statistical analysis of data Data entry was performed using EpiData V.3.1 software. Data were then exported for statistical analyses using SPSS V.17.0. For continuous variables, mean and SD were calculated, while for categorical variables we calculated the proportions. Our main outcome variable was HIV-infected women who were currently using any modern contraceptive methods. Pearson's χ 2 test or Fisher's exact test was used when appropriate in bivariate analysis. Multivariate backwards stepwise logistic regression analysis was performed to identify independent risk factors for the dichotomous outcome contraceptive use or not. All variables significant during bivariate analysis at a p value <0.20 were introduced in a logistic regression model to estimate the adjusted OR (aOR). Interactions between the independent variables were tested. All these analyses Open Access were performed with 95% CI. To verify the robustness of the results, a sensitivity analysis was conducted to confirm the results found. We have performed the analysis by including women who have never heard about contraceptive methods, and then we excluded them to appreciate the variability of the statistical associations. We did not observe significant variability and logically we excluded those women (15/461) from the model. Our final model included only HIV-infected women who had heard about contraceptives methods. --- ethical issues We obtained consent from patients who participated in the study. For each of the person surveyed, the objectives, benefits to participate in the survey and progress of the investigation were clearly stated, as well as their right to interrupt the interview without justification. An informed consent form signed after the verbal explanation was made by the investigating officer in the language understood by the participant. --- results sociodemographic and clinical characteristics Table 1 shows the sociodemographic and clinical characteristics of the participants. In total 461 HIV-infected women of reproductive age and who were sexually active were enrolled into this study, of whom 267 (57.9%) were in the Centrale region and 194 (42.1%) in the Kara region. The mean (±SD) age of the participants was 34.3±7.1 years, ranging from 16 to 49 years. Among them, 40.6% had primary education or higher education level (45.3%), 54.7% were living in couple and 62.3% were living in an urban area. Out of the 461 women interviewed, 415 (90.0%) were on ART and for more than 2 years for 71% of them. The mean (±SD) duration on ART was 4.1±2.8 years. A quarter (25.4%) of the participants had a CD4 cell count of <0.35 × 10 9 /L at the last visit. Patients were classified as stage I (55.0%) or stage II (27.3%) based on the WHO clinical classification at the time of the survey. The partner's HIV status was unknown for 56.4% (260/461) of the participants. Most of the patients were followed up in a public hospital centre (61.8%), in a centre with available doctor (86.3%) or with a psychologist (55.7%). --- reproductive health outcome The majority of women (85.3%) reported having at least one child, while six out of ten participants expressed desire of having kids. Four hundred and forty six (96.7%) women reported that they heard about contraceptives methods. Among them, 70.2% (313/446) were informed by healthcare providers. At the time of the survey, the proportion of women who were using a contraceptive method was 74.7% (333/446) (table 1), and among them 74.5% (248/333) reported using condom, 8.4% (28/333) were using hormonal contraceptive and 16.9% (56/333) reported using dual methods combining condom and hormonal contraceptive. For 15 (3.3%) women who have never heard about contraceptives methods, we considered they had missing data for the variable contraceptive use. Furthermore the proportion of women using contraceptive was significantly higher among participants with higher level of education, ranging from 57.1% in women with no education to 82.8% in those having reached the secondary education level or higher (p<0.001). However, this proportion was significantly higher (p<0.001) among women at stage I (82.1%) than those at stage II (70.0%) or those at stages III and IV (58.4%). The prevalence of contraceptive use was significantly lower in women living in couple (p=0.002), higher among those who had children (p=0.032) and higher in women on ART for 2 years or more (p=0.025). Women followed up in a private centre (p<0.001) or a centre with a psychologist (p=0.011) were more susceptible to use contraceptive methods (table 1). --- Factors associated with contraceptive use In multivariate analysis, only five factors remained associated with contraceptive use: education level, marital status, clinical stage, type of health centre and having children. Women with primary education level or those with secondary education level or higher were, respectively, two times more likely (aOR=1.99, 95% CI (1.05 to 3.76)) and four times more likely (aOR=3.95, 95% CI (2.03 to 7.67)) to use a contraceptive method than those who did not have any education, whereas participants living in couple were 55% less likely (aOR=0.45, 95% CI (0.28 to 0.74)) to use a contraceptive method. Women who reported having children and those followed up in a private structure were almost three times more likely (respectively, aOR=2.51, 95% CI (1.41 to 4.5) and aOR=2.54, 95% CI (1.22 to 5.29)) to report current use of contraceptive. Patients at AIDS clinical stage III or IV were 53% less likely (aOR=0.47, 95% CI (0.23 to 0.87)) to use a contraceptive method than those at clinical stage I. In addition this likelihood of using contraceptive is even lower for HIV-infected women at AIDS clinical stage III or IV followed up in private centres (aOR=0.13, 95% CI (0.03 to 0.64)) (table 2). --- DIsCussIon In this study, conducted in two regions in north of Togo, 96.7% of HIV-infected women had heard about contraceptive methods and mainly from health providers. Education level, marital status, AIDS clinical stage, type of health centre and having children had influenced the use of contraceptive methods among HIV-infected women. A high proportion of knowledge on contraceptive methods was also reported among women aged 15-49 years in the general population in Togo (96.3%) in 2013-2014 16 and among HIV-infected women on ART in Ethiopia (97.0%) in 2013. 18 This showed that seropositive women were as exposed to reproductive health Open Access Open Access information as the rest of the general population, which is a major step towards the use of contraceptive methods. We also found that almost three-quarters (74.7%) of the participants were using a contraceptive method. This proportion was higher than that of 19.9% reported in the general population in 2013 in the Demographic and Health Surveys (DHS) in Togo. 16 This was evidenced in prior studies conducted in Sub-Saharan Africa, 12 19 which reported that HIV-infected women seemed to be more likely to use contraceptives than HIV-negative women in public health facilities. This could be explained by the fact that HIV-infected women are frequently in contact with health workers and received more information on reproductive health during their follow-up. HIV-positive women are strongly encouraged to use contraceptive methods to prevent mother-to-child transmission of HIV. Similar results were found in South-East Nigeria (73.1% 10 ) or in Ethiopia (71.0% 20 ), where a high proportion of HIV-infected women used contraceptives. However, lower rates of contraceptive use were reported among HIV-positive mothers in some previous studies in Ethiopia (45.7% 18 ), Uganda (45% 14 ) or Ghana (42.6% 11 ). These differences might be due to temporal and regional variabilities, including policy guidelines on reproductive health. In fact cultural characteristics and beliefs, including the perception of the value of a child in the community, may vary through African regions, and this could strongly influence the decision of using a contraceptive method or not. In addition, in Togo, healthcare providers in HIV clinics have recently benefited from a programme of strengthening their skills on family planning. Non-governmental organisations have also been established to promote reproductive health through the distribution of contraceptive methods. This would have encouraged HIV-infected women to use these methods. As reported in previous studies in Western Africa, 9-11 condom was the most common contraceptive method used by HIV-infected women in this study. Fearing possible pharmacokinetic interactions between hormonal contraceptive and antiretroviral in people living with HIV, 21 22 healthcare providers more often advised HIV-infected women to avoid hormonal contraceptive method in favour of condoms. Condoms, in addition to being accessible and very effective in preventing unwanted pregnancies, contribute to the secondary prevention of HIV, especially in this context where more than four out of ten HIV-infected women did not know the HIV serostatus of their sexual partner. It is therefore important to know the influence of the HIV-infected woman in the decision-making process of condom use or not in a couple. In this study, the decision to use contraceptive methods in HIV-infected women was influenced by several factors, including education level, marital status, AIDS clinical stage, type of health centre and having children. Our findings revealed that women who attended school regardless of level (primary, secondary or higher education) were more likely to use contraceptives than those who could not read and write. Women education, which --- Open Access is key to societal development, remains a strong determinant of contraceptive use in Sub-Saharan African. This result was consistent with different studies conducted in Ethiopia 23 24 and in Malawi. 25 Women who attended school were able to better analyse reproductive health information, and to understand the mechanisms of action, and the advantages and disadvantages of different contraceptive methods. This could reassure them about the use of these methods and allow them to make a judicious choice. Our study showed that HIV-infected women who were living with a partner at the time of the survey were less likely to use contraceptive methods. In fact women in couple were more likely to express their desire to have children. This desire is increased by social pressure, which underlines a great importance of having children in the well-being of the couple. In addition, unmarried women would use contraceptive methods more than married women to avoid unwanted pregnancies, which could deteriorate their social image. Unlike our finding, Worke et al 24 in Ethiopia reported that married women were more likely to use contraceptives than those who were divorced or separated. In our study, HIV-infected women followed up in private centres were more likely to use a contraceptive method. Although very few studies compared the quality of healthcare between the public and private sectors, particularly in family planning services delivery, it is generally evidenced that healthcare is better in private health centres. 26 27 In private centres, even though they are non-profit-making facilities, it is reported that care providers are motivated to maximise patients' satisfaction in order to retain them, and this through the provision of good-quality healthcare. However, prior studies 28 29 reported that public health facilities were more likely to offer family planning services. Therefore, it is important to improve the quality of family planning counselling and services delivery in public health facilities in order to encourage patients, including HIV-infected women, to use these services. Among HIV-infected women, we found that the odds of contraceptive use were lowest at high AIDS clinical stage. Indeed patients at stages III and IV were less likely to use contraceptive methods. At these stages of the disease, patients were likely to suffer from opportunistic infections with certainly a reduction of sexual activities. This could impact on their demand for reproductive health services, including contraceptive use. Moreover, the odds of using contraceptives are even lower when women are followed up in a private centre. This could be explained by the fact that in our setting, HIV-infected patients in the advanced stage of the disease are most often referred for treatment in public hospitals. HIV-infected women who had children, regardless of number, were more likely to use a contraceptive method. This result is consistent with prior studies conducted in Uganda, 30 Malawi 25 and Ethiopia, 23 31 which reported that contraceptive use increased with the number of children. In fact, among women who gave birth at least once, it is very common for them to use contraceptive methods to space or limit births, especially for those who have already reached the number of children they want. limitations First, the sample may not be representative of the whole country because of cultural disparities across the country. Second, this study took place in health facilities with little chance of including patients who are less regular in the health centres and may have different characteristics. Sexually active women were defined as those engaging in sexual activity in the past 6 months; this definition used in the study could differ from other similar studies. In addition, we lacked information/analysis by contraceptive types, which can impact mother-to-child transmission. Finally, we relied on self-reported reproductive health behaviour through a face-to-face interview, which may introduce information bias. However, these biases would have had very negligible effects on the estimates in this study. --- ConClusIon This study demonstrated a high prevalence of contraceptive use among HIV-infected women followed up in health facilities in Centrale and Kara regions in Togo. Private health facilities seemed to favour the use of contraceptive methods, but not in women at clinical stages III and IV. Despite these results, there is a need for an intensified effort to increase the reproductive health service utilisation particularly in public health facilities in these regions. HIV caregivers must also integrate family planning services in HIV care during follow-up visits. --- Open Access the overall scientific management of the study, for analysis and interpretation, and the preparation of the final manuscript. All the authors read and approved the final manuscript to be submitted for publication.

f67c35c4ff93dd239d98775773a06a0967951e13

Local status and power in area-based health improvement partnerships

Area-based initiatives (ABIs) have formed an important part of public policy towards more socio-economically deprived areas in many countries. Co-ordinating service provision within and across sectors has been a common feature of these initiatives. Despite sustained policy interest in ABIs, little empirical work has explored relations between ABI providers and partnership development within this context remains under-theorised. This paper addresses both of these gaps by exploring partnerships as a social and developmental process, drawing on concepts from figurational sociology to explain how provider relations develop within an ABI. Qualitative methods were used to explore, prospectively, the development of an ABI targeted at a town in the north west of England. A central finding was that, although effective delivery of ABIs is premised on a high level of coordination between service providers, the pattern of interdependencies between providers limits the frequency and effectiveness of cooperation. In particular, the interdependency of ABI providers with others in their organisation (what is termed here 'organisational pull') constrained the ways in which they worked with providers outside of their own organisations. 'Local' status, which could be earned over time, enabled some providers to exert greater control over the way in which provider relations developed during the course of the initiative. These findings demonstrate how historically constituted social networks, within which all providers are embedded, shape partnership development. The theoretical insight developed here suggests a need for more realistic expectations among policy makers about how and to what extent provider partnerships can be managed.

Introduction Initiatives targeting geographical areas of relative deprivation (area-based initiatives -ABIs) have been a consistent feature of public policy within Western countries in recent years (Randolph, 2004, Bradford, 2007, Larsen and Manderson, 2009, Berkeley and Springett, 2006). Since 1997 in particular, a central feature of ABIs in the United Kingdom (UK) has been an emphasis on co-ordinating service provision within and across sectors through various partnership arrangements (Sullivan et al., 2006). These partnerships have generated considerable research interest, which has revealed consistent difficulties in their development (Benzeval, 2003, O'Dwyer et al., 2007, Judge and Bauld, 2006, Beatty et al., 2010). Despite this attention, the experience of ABI partnerships remains under-theorised, limiting the extent to which the difficulties reported in the literature can be explained. Although interorganisational relations have been examined in detail in the fields of business and healthcare (Aveling andMartin, 2013, Dickinson andGlasby, 2010), ABI partnerships in public health present a set of specific issues given that they usually involve a large number of organisations working towards disparate aims within the confines of a time-limited intervention. This paper offers some empirically grounded theoretical insights into partnership processes among service providers within ABIs in order to shed light on why collaboration often remains elusive. It presents findings from a case study of an ABI delivered between 2007 and 2012 in a town in the north west of England. Target Wellbeing (TW) was a BIG Lottery funded initiative targeted at 10 geographical areas of health 'disadvantage' across the North West, defined as such by initiative co-This paper was published in Health 18 (6) 561-79 https://www.ncbi.nlm.nih.gov/pubmed/24695385 3 ordinators according to levels of self-rated physical and mental health, obesity rates, fruit and vegetable consumption, incidence of coronary heart disease and benefit claims (name withheld, personal communication, 2007 1 ). The multi-sector providers co-ordinating TW intended to improve the health and wellbeing of residents via a programme of activities in targeted areas. Each programme was made up of 8-10 projects designed to improve one or more of the following: healthy eating, physical activity and mental wellbeing. The projects were delivered by a range of voluntary and statutory organisations and each programme was managed by a lead organisation and a designated TW co-ordinator. Figure 1 shows the management structure for TW. --- Figure1 Target Wellbeing management structure This paper was published in Health 18 (6) 561-79 https://www.ncbi.nlm.nih.gov/pubmed/24695385 4 The specific question this paper examines is, how do relations between service providers develop over time when an ABI is introduced in an area? Ideas from figurational sociology were drawn on to conceptualise ABI collaborations as a figuration of interdependent people. The paper starts with a brief review of the literature on service provider relations within ABIs before introducing concepts from figurational sociology that were used to inform the research. The methodology is then described and the findings presented, describing and explaining the social processes that shaped co-ordinated working over time. The discussion examines how figurational sociology facilitated a more adequate understanding of the ways in which ABI partnerships develop and considers some of the policy and practice implications of our conclusions. --- The rhetoric and reality of provider collaboration Since the late 1960s successive UK governments have shown considerable interest in co-ordinating service provision through ABIs (for a brief overview see Burton, 1997, Stewart, 2001). The Labour Government of 1997-2010 argued that the health of people living in deprived areas could be improved through, among other things, better co-ordination of, and improved access to, services (Department of Health, 2004, National Institute for Health and Clinical Excellence, 2008, Department for Communities and Local Government, 2006, Department of Health, 2001). Coordination of local public services was a core feature of many Labour-funded initiatives including Health Action Zones (HAZs), Sure Start and New Deal for Communities. The Government claimed that the causes of worse health and social outcomes in deprived areas were interconnected and therefore required the co-ordinated expertise of a range of providers (Blair, 1997). HAZs, for example, were seen as This paper was published in Health 18 (6) 561-79 https://www.ncbi.nlm.nih.gov/pubmed/24695385 5 vehicles for innovating services by encouraging providers to work outside of their professional boundaries in the delivery of projects seeking to promote health (Bauld et al., 2005). Although there have been fewer government funded initiatives under the current Coalition Government, interest in local co-ordination of services has remained (Department of Health, 2010). Despite sustained policy interest, research indicates that ABI partnerships have not been implemented according to the expectations of policy makers (Berkeley and Springett, 2006) and that co-ordinated working between providers within ABIs has been limited (Hunter and Perkins, 2012). Some of the problems with partnership development reported in empirical studies are discussed below. --- Partnerships as social processes Much of the work on ABI partnerships has focussed on identifying "factors" that influence partnership development (Wildridge et al., 2004, 6) or, as Dowling et al. (2004) have argued, on the identification of barriers to implementing planned action. For example, differences in the governance structures of organisations across different sectors were identified as barriers to collaboration in the strategic development of HAZs (Unwin and Westland, 2000), but are the ways in which governance structures are established, maintained or challenged through human interaction within an ABI partnership are not understood. Similarly, several studies have shown that competition for funding between service providers within ABIs can undermine capacity for collaborative working (Milbourne, 2009, Carlisle, 2010) and that such competition can exacerbate "fear of outsiders" among service providers (Milbourne, 2009, 287). While such work is important in identifying problems in partnership development, we would argue, for the reasons set out below, that none of this work provides a model which offers an adequate understanding, on a more theoretical level, of the processes involved. We would further argue that such a general model is required for, without a continual interdependencewhat Elias referred to as "an uninterrupted two-way traffic" (Elias, 1987:20) between the development of detailed knowledge and synthesising models, the collection of detailed knowledge of particular situations will be of limited use, for it is only by the use of synthesising models that we can generalise from one situation to another. The limitations within the ABI literature can partly be explained by the focus on strategic partnerships between service co-ordinators at the regional or city level (Beatty et al., 2010, Carlisle, 2010, Henderson, 2011, Sullivan et al., 2006). This has directed the focus of research towards management and leadership issues within ABI partnerships and has deflected research attention from the social relations that develop between those involved in service delivery, which is central to our purposes in this paper. Checkland et al. (2009) suggest that more attention is needed on the social conditions that create barriers to implementing policy. Examining the ways in which providers have become interdependent with others over time, including colleagues and professional peers, might facilitate a better understanding of the ways in which they are constrained in their capacity for collaboration by emotional involvement in a particular set of relations. Pawson and Tilley (1997, 70) draw attention to the fact that social interventions are "introduced … into an existing set of social relationships." However, there has been a tendency within ABI evaluations based on a realistic methodology to view provider relations as static (Barnes et al., 2003). Furthermore, the cross-sectional study design of many ABI evaluations has meant that health partnership processes are often depicted as linear and predictable (see for example Boydell and Rugkåsa, 2007, Lawless, 2002, Wholey et al., 2009). Asthana et al. (2002) identified a framework for evaluating HAZs, distinguishing between context, inputs, processes, outcomes and impacts. This framework, however, does not identify the connections between these elements, failing to recognise the complex ways in which these social processes are interrelated. Changing social relations (between those involved directly in the partnership and a range of others on the periphery) and their influence on the development of partnerships have not been adequately accounted for thus far. As Sullivan et al. (2006) note, researchers have struggled to explain how partnerships are influenced by unplanned events within, what is described as, the wider social context of the partnership. The influence of national policy changes on local-level partnerships (Beatty et al., 2010) suggests that the social networks in which ABI providers are embedded, beyond the immediate partnership, are likely to shape the way in which they work with other providers. Although the everyday microdynamics of partnerships have been researched and reportedas illustrated in the above examplesthey have not been adequately understood. This is partly because the everyday relations can only be understood when contextualised within broader, longer-term social processes. The literature indicates that there is no straightforward causal relationship between strategic aspirations for partnerships, planned activity and outcomes. Examining prospectively, as we do here, the planned and unplanned outcomes in an ABI, and the processes that connect them, provided an opportunity to develop understanding about processes of co-ordinated working within an ABI. Some key concepts within figurational sociology, which informed our theory of partnership development, are discussed below. --- Theorising service provider collaboration in public health ABIs Figurational sociology, a perspective which has been used to examine organisational change within the NHS (Dopson andWaddington, 1996, Mowles, 2011) Elias, 1991). Service providers within an ABI are interdependent with (at the least) other local and national providers, funders and policy makers, and their capacity for co-ordinated action is therefore both facilitated and simultaneously constrained by the actions of those people. Planned public health ABIs, therefore, are likely to produce consequences which no group or individual intended (Elias, 1994). Examining the figurations in which service providers are immersed presents an opportunity to explain why providers have been constrained in their capacity for collaborative working. A central dimension of figurations is power, conceptualized not as a substance possessed by particular individuals or groups but as 'a structural characteristic of human relationships' (Elias, 1978: 74). Power is never absolute but always a question of relative balances, for no-one is ever absolutely powerful or absolutely powerless. Power balances are also inherently unstable and continuously in flux. While most sociological perspectives draw attention to power relations, conceptualising an ABI partnership as a figuration of interdependent service providers draws attention to the ways in which their interdependencies are characterised by different balances of power. Where there are heavy imbalances of power, for example in relation to the professional status of providers within a crosssector group, some parties might be better able to exert more control over events than others. Based on empirical examination of resident relations within a small town, Elias (with Scotson) (1965) argued that power balances within a figuration could be influenced by one's status as either 'established' or 'outsider'. The introduction of a new set of projects into a small town as part of an ABI has much in common with the social changes examined by Elias and Scotson (1965). Observing caution that the 'established-outsider' concept might dichotomise the experiences of different groups (see Bloyce and Murphy, 2007), it might usefully be applied to examine power relations between providers in a small town. Finally, for the purposes of this paper, figurational sociology encourages analysis that incorporates the historical context of social relations within an area. Elias (1991) argued that because social phenomena emerge from interweaving human actions, it is impossible to locate their origins to any precise 'moment' in time. The interweaving actions result in dynamic interdependencies and shifting balances of power between people over time. However, Elias also perceived that over time a person's place in a network of relations with others strongly influences her/his disposition, tastes, ambitions and expectations (Elias, 1991) or what he described elsewhere as habitus (Elias, 1996). Examining social processes prospectively, and thus developmentally, therefore has the potential to better explain unplanned events. Again, figurational sociology is not unique in pointing to the importance of historical context, but offers 'a set of sensitizing concepts … with the potential to draw many of the various threads of sociological thought together' (van Krieken, 2001, 353). --- Methodology A longitudinal, qualitative case study design was used to examine relations between service providers within a single town ('Seatown') targeted by TW. This provided an opportunity to trace the links between particular events (Maguire, 1988) in order to generate theoretical generalisations about the social conditions that shape partnership development (Yin, 2003, Dopson, 2003). The study had a commitment to a grounded theory approach (Strauss and Corbin, 1998) while also testing out a number of figurational ideas, using them as sensitising concepts as outlined above, to maintain a two-way relationship between inductive and deductive processes (Elias, 1978). Non-TW co-ordinators 5 Total 29 Interviews took place over 12 months. Discussion focussed on the history of provider relations in the town, perceived balances of power between providers, processes through which providers worked together, and ways in which co-ordination between providers was perceived to influence service provision locally. In order to explore changes over time, three interviewees were interviewed twice and a second interview was arranged with providers at four out of the six TW provider organisations in the town, albeit with a different person at the organisation in some instances. Participants for these follow-up interviews were purposively sampled according to their place in the network of providers; the aim was to explore changes to the network that had been identified through observations and documentary analysis. For example, analysis indicated that the person appointed as Seatown programme manager occupied a central position within the figuration of TW providers and so this person was interviewed twice. All fieldwork was carried out by the lead author. Interviews were audio-recorded and transcribed verbatim; the data were managed in NVivo. Coding was carried out by the primary author but on-going discussion with the secondary authors encouraged a greater degree of detachment from the data (Perry et al., 2004, Elias, 1987). Figurational ideas were used to sensitise the researcher to particular social processes taking place at every stage of the analysis. In this respect, the use of grounded theory facilitated a "constant interplay" between generating new ideas directly from collated data and testing existing explanations of human actions as Elias (1978, 34) encouraged. Observation and documentary data provided contextual information in which to situate interview accounts. Constant comparison of incidents across interview, observation and documentary data facilitated the synthesis of codes (Strauss and Corbin, 1998) which were used to capture the different ways in which particular ideas and issues emerged in the data (Bartlett and Payne, 1997). Following initial coding of the data, connections between codes were explored in order to develop explanations about what was taking place. The analytic concepts developed through this process formed the basis for theoretical development as Charmaz (2006) outlines. --- Findings TW projects within Seatown were commissioned by representatives from the Local Strategic Partnership (LSP) via a competitive bidding process. On the basis of 19 submitted bids, the LSP members selected eight projects to fund, delivered by six different organisations. Within these organisations, new or existing staff were appointed to deliver TW activities. In some instances, these staff had also been appointed to deliver other projects within the organisation, funded through other sources. The social dynamics between the providers that emerged as relevant within the analysis are outlined in Table 2. --- Organisational pull The analytic concept 'organisational pull' was developed from the data and captured the way in which TW providers were interdependent with others in their organisation, which constrained their capacity to work collaboratively with TW providers at other organisations. A shared commitment to the "mission" and values of their organisation was one of the ways in which these providers were interdependent (TW provider 14). Association with a particular area of expertise shaped how providers defined their professional identities. Consequently, staff identified more closely with the specialist organisations in which they worked than with TW more generally, as these were the organisations within which their professional identities were rooted. One TW coordinator commented that the TW providers "see themselves as … a member of [their organisation] …as opposed to, 'I'm a member of Target Wellbeing'" (TW coordinator 01). Where TW providers had experiences in common with their service users, this shaped their commitment to the client group with which the organisation worked. For example, one TW provider (TW provider 14) described how her work with young people at a mental health organisation was shaped by her own low self-esteem as a young woman. In these instances, as well as instances where providers had a long history of working with a particular client group, past experience had shaped providers' views about the priorities for services in 'deprived' areas. Providers at different organisations did not always share the same priorities. One TW provider perceived that others were "delivering their own agendas" (TW provider 12). The historically constituted social identities to which TW providers subscribed were therefore defined against other professional identities in the town. Analysis of observation and documentary data indicated that TW providers working on different projects at the same organisation worked together more frequently than did TW providers across different organisations. TW providers working on different TW projects within the same organisation reported working as "one big team" within their own organisations (TW provider 12) and, from the point of view of co-ordinators, "seem[ed] to merge together" (TW co-ordinator 01). Organisational pull also helped to explain the way in which TW providers were drawn together because of their dependence on one another for future work. Although many TW providers were employed through short-term TW funding, there was an expectation among them that should their organisation secure funding from other sources, this might enable them to secure more paid work. TW providers were keen to ensure that collaboration facilitated their own work in a particular field; one TW provider from an organisation based some distance from the town said, "We [as an organisation] want to develop links with [the town] and develop new projects from our contacts" (TW provider 02). Providers at other organisations were sometimes deemed by TW providers to pose a threat to the future success of their organisation. This was exacerbated by the introduction of individual project recruitment targets by TW co-ordinators, which heightened the sense of competition between TW providers. These targets (set by TW co-ordinators) were regarded by many TW providers as an important measure of success to the funders, partly because of monitoring arrangements (which were deemed to be more extensive than the delivery arrangements) and partly due to previous experiences of having funding withdrawn having failed to reach targets within past initiatives. Several TW providers expressed a fear that engaging in joint activities with other TW providers might threaten achievement of their own organisation's resident recruitment targets as the following quotation illustrates: I just don't think we're talking to each other as well as we could in terms of projects. And I think part of that is the fear of crossing over (Non-TW co-ordinator 02). Therefore, the deeply-rooted behaviours of providers interwoven with the actions of others in both the TW figuration and more complex figurations at regional, national and global levels, constrained the ways in which TW providers approached relations with providers outside of their own organisation. Although intra-organisational interdependencies had a strong influence on providers in the early stages of the initiative, relations between providers were dynamic and over time other processes emerged that mediated the influence of these interdependencies. Analysis of observation and documentary data indicated that TW providers across different organisations shared more information about their work with one another over time. This was particularly evident at quarterly programme meetings, where TW providers shared more details about their activities over time. During one of the last quarterly meetings, providers discussed how they had felt more inclined to work with TW providers at other organisations once they had begun --- 'Local' status The development and operationalisation of 'local' status were processes which influenced the balance of power between providers in the figuration. Being 'local' was expressed as having one or more of the following attributes: living locally, having an established history of working in the area, or working from a local office base. TW and non-TW providers and co-ordinators associated a number of positive characteristics with local status. Local status was associated with having a good understanding of the population targeted by the initiative. This understanding was considered to be valuable by TW providers because, it was explained, it was used to inform the development of activities and recruitment methods within projects. One TW provider explained that she had sought to appoint people who "live [d] in … local wards" to deliver TW activities because they were more likely to have local knowledge (TW provider 12). Others commented that living locally gave providers greater insight into resident needs. Local status was also associated with caring more about residents. The following quotation, from a non-TW provider at an organisation based in Seatown, demonstrates how local status was associated with an investment in its residents: I do what I do here and I care about it because I live here and my family lives here, I want there to be good services, you know … If I didn't live here, would I care in the same way or would it just be about the money? (Non-TW co-ordinator 02). Local status was explicitly defined against "outsider" status which was sometimes associated with poor understanding of residents' needs (TW provider 03). Analysis indicated that 'outsider' providers were perceived as posing a threat to the position of those based in Seatown. Some 'local' non-TW providers, for example, expressed agitation that providers based outside of Seatown had been chosen to deliver TW projects. One out-of-town TW provider described how providers based in Seatown had predicted that his organisation would be unable to deliver the TW programme successfully: The initial feedback … was [that] there was no chance we would be Local status was associated with legitimacy in terms of accessing Seatown resources. TW providers and co-ordinators articulated a view that being seen as local made other 'local' providers more inclined to refer their service users to TW. For example, TW providers whose organisation had connections with other providers in Seatown revealed this connection to people with whom they wanted to work. One TW provider described how the "reputation" of her organisation gave it a "real advantage" when working with other providers in Seatown; she said, "they don't just want anybody coming in and working with their [users]" (TW provider 12). Local status was cultivated by the ways in which providers worked with one another. TW providers with experience of working in the area revealed that, in some instances, they preferred to refer their service users to non-TW providers with whom they had established relationships than to other TW providers with whom they did not. Explaining why she preferred to refer her project users to one provider over another, one TW provider said: We've never really been able to engage with [one of the TW projects] … [another non-TW provider] will work longer with our [users] because of the working relationship we've got with them. So… there are probably other organisations that we already work with. (TW provider 14). Referring residents to 'local' providers with whom one already had an established relationship perpetuated a provider's status as local and served to prevent other providers from accessing resources. Such was the perception that being local was an advantage that one TW provider (TW provider 05) accounted for the difficulty she had in establishing relations in the town by wrongly assuming that her organisation was the only one that was not 'local'. This indicates that local and outsider status was used effectively to exclude some providers from the provider network in the town. --- Earning one's stripes Outsider status was not fixed but, rather, was part of a fluctuating balance of power between providers. Analysis indicated that local status could be earned over time, particularly through developing relations with others who were deemed to be local. There were several processes through which the balance of power between providers shifted over time. First, the development of "niche" activities by TW providers, which did not overlap with existing provision, facilitated the development of relations with non-TW providers (TW Provider 13). Over time, some TW providers made changes to the activities that they were delivering because they perceived that there was "overlap" with their provision and that of other TW and non-TW providers in the town (TW co-ordinator providers based outside Seatown were more likely to adopt this strategy. One TW provider, for example, described how "fitting in with their agenda" made it easier to access support from local non-TW providers (TW provider 10). This can be understood with reference to the sense of competition between providers in the area. The development of a specific niche for TW activities removed some element of competition between providers and increased the likelihood that TW providers could offer something to the clients or users of non-TW services. This illustrates the way in which 'local' providers were able to use their status to influence what was delivered within TW, how it was delivered, and by whom. Another way in which some TW providers became more accepted among providers in Seatown was through word-of-mouth endorsements from providers considered to be more 'local'. TW providers at an organisation with no history of working in the town asked a TW co-ordinator, based at the PCT, to arrange meetings for them with health practitioners in the town. One co-ordinator considered that these meetings provided legitimacy for TW providers and a "sort of reference … to actually get recognised as something that was kosher" (TW co-ordinator 01). These endorsements could start a process of discussion between providers, as one TW provider said, "It was certainly a door opener for us with the recommendation from the PCT" (TW provider 05). TW providers considered it important that other providers understood and valued their work and this could be achieved through word-of-mouth endorsements. The influence of word-of-mouth processes can partly be explained by the perception among local providers that the voluntary and community sector (VCS) in Seatown was underdeveloped. With few established networks between VCS providers prior to TW, word-of-mouth endorsements helped 'local' VCS and statutory providers to determine whether or not it would be helpful for them to work with the newlydeveloped TW projects. The sense of competition between providers also influenced their sense of wariness and word-of-mouth endorsements enabled providers to judge the extent to which providers with new projects might pose a threat to their own organisations. --- Discussion: Theorising Target Wellbeing In this paper we have drawn upon key aspects of figurational sociology in order to offer a more adequate understanding of processes of joint working, which have been a key feature of social policy within many Western countries. There has been an assumption that ABI partnerships have encountered problems due to implementation failure. By emphasising the complexity of the figurations within which ABI providers were immersed, this study has shown that the problems within this ABI partnership were not chance or accidental events, nor can they be understood in terms of poor leadership; rather, they can only be understood in terms of the unplannedand in this case unwantedoutcomes of the way in which networks of relationships between service providers developed over time. Organisational pull was a concept developed from the data and informed by the concept of figurations to explain processes that constrained partnership development. It reflects the way in which TW providers within an organisation were drawn to work together rather than with providers outside their organisation. Elias (1978, 15) argued that individuals "are directed to and linked to each other in diverse ways through their basic dispositions and inclinations," formed over many years through processes of socialisation or habitus formation. Working with the same people, or in a particular field of professional practice over many years, providers at the same organisation had similar priorities in terms of what they thought was needed in deprived areas such as those targeted by TW. These findings resonate with those made in the field of teacher education, where the term 'occupational socialisation' has been coined to explain the way in which learning processes in a particular field of occupation come to shape perceptions (Lawson, 1983). Shared dispositions could be seen to bind TW providers together in this study such that they developed a sense of allegiance to the work of their organisation. As Milbourne (2009, 291) has noted, "collaborative work often depends heavily on the commitment, dispositions and networks of individuals, and situated experiences." Through the longitudinal approach adopted in this study we have sought to show how these commitments, dispositions and experiences of service providers are shaped through the historically constituted figurations of which they are a part. Providers at the same organisation had a vested interest in the survival of their organisation, which became more apparent in the light of their fears about competition and funding. Competition for funding between organisations within ABIs has previously been shown to undermine capacity for collaborative working (Carlisle, 2010, Milbourne, 2009). The findings from this research extend this analysis to show that competitive processes between providers are on-going and do not necessarily recede once the commissioning process is over and that the sense of competition between providers at different organisations seemed to be exacerbated by TW monitoring and evaluation processes. One of the unintended consequences of setting resident recruitment targets at an organisational level was that TW providers were persuaded that such targets were vital to the funders, which limited TW providers' capacity to work towards other goals. Organisational pull therefore helps to explain how the interweaving actions of providers and co-ordinators led to consequences that co-ordinators, despite their apparent position of authority, could not control. The networks in which providers and co-ordinators were embedded (including those with funders and other providers) constrained the development of collaborative working. Competition was an aspect of a struggle for power between TW providers that was predominantly shaped by the status of providers as either 'local' or 'outsiders'. Milbourne (2009, 287) showed how competition for funding between providers can exacerbate "fear of outsider [providers]" in community-based initiatives. This research provides an explanation for Milbourne's findings by showing how the significance of outsider status in TW reflected power balances between providers. TW providers who were successfully able to claim 'local' status defined 'local' and 'outsider' status in dichotomous terms that served to reinforce their own privileged position, in much the same way identified by Elias and Scotson (1965, 81). As noted earlier, it is important to avoid conceiving of networks of relations as static: a project like TW is more adequately conceptualised as a social process with fluctuating balances of power. As such, the position of providers as 'outsiders' could, at least to some degree, be modified. TW providers who were able to earn the endorsements of some 'local' providers and adapt their activities to fit in with them were more likely to earn local status which facilitated collaboration. These findings support the claims made by Bloyce and Murphy (2007) that 'established and outsiders' might be most helpfully used to understand degrees of establishment in a community and suggest that a provider's status in a community is in a state of fluxshifting in response to new funding arrangements. A figurational view of power relations in constant flux seems, therefore, key to an understanding of ABI partnerships. --- Conclusions It is hoped that this study has provided a more adequate account of partnership development in ABIs than has hitherto been developed. Concepts from figurational sociology were used to inform the development of a framework that focused on the constraints on service provider and co-ordinator actions and helped to draw analytic attention to the ways in which shifting power dynamics over time shaped the way in which provider relations developed. A number of policy and practice implications can be drawn from this work. Although previous research has revealed the potentially negative impact of competition before, it remains the case that service co-ordinators are unable to control the unplanned outcomes that often emerge from competitive processes. Although ABI co-ordinators are relatively powerful, they are still heavily dependent on those who deliver projects. Complex interdependencies are likely to limit the ability of any one group to coordinate service delivery even in a relatively small geographical area. Joint working tended to be viewed as a managerial issue in this initiative, as shown by the complex monitoring arrangements that were set up. Less emphasis was placed on supporting social relations. Although monitoring processes are important, it was clear that the development of organisational targets were not conducive to collaboration between providers at different organisations. This raises questions about the ways in which joint working might be better nurtured. Co-ordinator definitions of success in this ABI were framed in terms of resident outcomes, rather than partnership development. Local status, which represented commitment to the area and legitimacy to some providers, facilitated the development of relations between particular providers. To some extent, the concept 'being local' reflects a power struggle between providers for resources, but, given the advantages associated with local status, it might be helpful to explore how this status could be nurtured to develop more supportive conditions for collaboration. Greater appreciation of the historically produced social networks within which providers are embedded provides a more adequate understanding of partnership working. However, these findings indicate that there is a need for more realistic expectations among policy makers about what can be achieved through short-term area-based partnerships.

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“I could not give him the funeral he deserved”: The role of alternative mourning rituals during the pandemic

Amid the COVID-19 pandemic, measures were enforced that constrained people's ability to engage in conventional funeral and mourning rituals, which in general serve as vital mechanisms for coping with the experience of loss. This study aimed to investigate how these limitations affected early grief symptoms and the influence of alternative mourning rituals (paying tribute on social media, lighting candles in memory of the deceased, and using objects of the deceased) on moderating the relationship between individuals' perception of these limitations (such as being unable to perform the present body ceremony or fulfill the funeral wishes of the deceased) and the intensity of the grief symptoms. The study involved 227 participants, aged between 18 and 77 years, who had experienced the loss of a loved one during the pandemic. Results demonstrated that higher levels of perceived limitation in funeral ceremonies are associated with greater intensity of grief responses. Paying tribute on social media and lighting candles in memory of the deceased person moderated the relationship between the perception of limitation in fulfilling the deceased's wishes in relation to the funeral ceremonies and the intensity of the grief responses. Using objects moderates the relationship between the perception of limitation in performing a present body ceremony and the intensity of the grief responses. Results underline the relevance of psychological flexibility, in particular concerning alternative morning rituals, that can be used as a way of buffering the impact of the perception of limitation in funeral ceremonies on the intensity of grief responses. This study offers a distinctive insight into bereavement during the pandemic, highlighting the role of flexibility in morning rituals in mitigating the deleterious effect of ritual restrictions on bereavement outcomes.

To combat the SARS-CoV-2 virus's transmission, global policies implemented restrictions that limited access to traditional funeral and mourning rituals. Families were unable to have contact with the deceased's body, coffins remained closed, and attendance at ceremonies was restricted (Aguiar et al., 2020). Therefore, several bereaved individuals were unable to participate in mourning rituals as desired, contributing to increased challenges in adjusting to their loss. Supporting this, a recent systematic review and meta-analysis indicated that throughout the COVID-19 pandemic, the overall prevalence of grief symptoms and disorders among the bereaved was 45.1% and 46.4%, respectively (Kustanti et al., 2023). Moreover, a study by Harrop et al. (2020) found that amidst the pandemic there were reports of higher levels of complicated grief symptoms compared to pre-pandemic levels. Mourning rituals have important therapeutic roles within the grief process. These include facilitating acceptance of the Susana Manquinho and Sara Albuquerque contributed equally and shared first authorship. 1 3 reality of loss, providing avenues for emotional expression and community support, maintaining a connection with the deceased, and deriving meaning from the loss (Albuquerque et al., 2021;Mitima-Verloop et al., 2021). Recent studies have shown that the inability to engage in these rituals due to pandemic restrictions has had a profound impact on bereavement experiences (Burrell & Selman, 2020;Chen, 2022). Pre-pandemic data suggest that dissatisfaction with funeral rituals and ceremonies is associated with a high risk for consequent depression, post-traumatic stress, and/or prolonged grief disorder (PGD; Mayland et al., 2020;Mitima-Verloop, et al., 2021). However, Burrell and Selman (2020) emphasize that the benefits of post-mortem rituals depend on the bereaved person's ability to adapt themselves to these rituals and express their goodbyes in a meaningful way, suggesting that the restrictions of these practices do not necessarily imply maladjustment to loss. In times of adversity such as the COVID-19 pandemic, flexibility in identifying alternative meaningful ways to honor the deceased becomes pivotal in the process of grief adjustment (Cardoso et al., 2020;Mergulhão, 2020). Recent research highlights the importance of coping and psychological flexibility, defined as the capacity to adjust emotional expression according to situational demands (Cohen & Katz, 2015), in adapting to the singular challenges posed by the COVID-19 pandemic in mental health (Hemi et al., 2023;Prudenzi et al., 2022). Also, psychological flexibility has been shown to contribute to reduced suffering, enhanced emotional regulation, and greater adaptability in dealing with the loss of a loved one (Bonanno & Burton, 2013;Cohen & Katz, 2015;Kashdan & Rottenberg, 2010). On the contrary, bereaved individuals with PGD display a less expressive and flexible repertoire than bereaved individuals experiencing adjusted grief (Bonanno & Burton, 2013). The psychological and behavioral flexibility to engage in alternative mourning rituals (AMR) and ceremonies has proven to be a protective factor against the severity of grief, anxiety, and loneliness and was associated with more post-traumatic growth (Cohen & Katz, 2015;Kashdan & Rottenberg, 2010;Knowles & O'Connor, 2015). Mourning rituals can be individual or collective (Mitima-Verloop et al., 2021). Individual rituals encompass creating something in order to express feelings (e.g., poems, drawings, paintings, books), visiting the grave of the deceased or the location of ashes, listening to music or watching a movie that evokes memories of the loved one, visiting a special place for the deceased, setting up an altar or designated spot, possibly with a photograph of the deceased, wearing something of the deceased, producing tattoos in tribute, and using objects of the deceased (Gibson, 2004;Mitima-Verloop, et al., 2021). The use of meaningful objects (e.g., photographs, clothing, jewelry, books) act as transitional objects with the deceased (Gibson, 2004;Wakenshaw, 2020). Transactional objects are symbolic material that provide security and connection to the bereaved. These practices can serve to facilitate the journey through the grieving process, allowing emotional connection and intimacy with the deceased (Goldstein et al., 2020;Wakenshaw, 2020). Examples of collective rituals are sharing stories with other people about the person who passed away, participating in a memorial service, paying tributes in public spaces, and using flowers, photos, and candles (Mergulhão, 2020). Often related to religious and cultural manifestations of mourning, the use of candles in the context of memorial ceremonies is a compensatory mechanism of caring for the loved one, facilitating reflection, serenity, expression of solidarity, grief, and compassion (Sedakova, 2015). Additionally, the internet and social media (e.g., Facebook, Instagram) provide new means of emotional expression and tribute to the deceased, thus constituting a collectively constructed mourning ritual (Christensen & Gotved, 2015). By creating specific online pages or platforms dedicated to the deceased with photos, videos, and other content, the grieving process is made public, favoring expressions of support and emotional connection, especially when physical contact is restricted (Brubaker et al., 2013;Meyer, 2016). Recent studies have emphasized the role of technology in facilitating collective mourning rituals during the pandemic, with virtual memorial services, online tributes, and social media platforms becoming important tools for grieving individuals to connect and share their grief experiences (Alexis-Martin, 2020; Costa et al., 2022;Sapalo, 2023). These activities enable the bereaved to overcome isolation and meet other bereaved people who have gone through a similar experience, with whom they can share memories and feelings, finding support and sometimes meaning in grief (Bailey et al., 2015). Research has demonstrated that AMR can alleviate the impact of physical contact restrictions by providing channels for grief expression, maintaining bonds with the deceased, and paying tribute to them (Cardoso et al., 2020). However, further investigation is required to fully understand the efficacy of these memorial practices in mitigating early symptoms of PGD, especially during the COVID-19 pandemic. Hence, the aim of the present study was to explore perceived limitations in funeral ceremonies and the moderating role of specific AMR (i.e., paying tribute on social media, lighting candles in memory of the deceased, using objects of the deceased) in the relationship between the perception of limitation in the funeral ceremonies (perceived limitations in performing the present body ceremony and in fulfilling the wishes expressed by the deceased concerning to funeral ceremonies) and the intensity of the early PGD symptoms. Based on the literature, the following hypotheses were established: a) higher levels of perceived limitation in the funeral ceremonies are associated with greater intensity of grief symptoms; b) the performance of AMR may attenuate the impact of the perceived limitation in the funeral ceremonies on the intensity of grief responses. --- Method --- Participants The sample was composed of 227 participants, aged between 18 and 77 years, of which females predominated. Regarding marital status, most participants were married or cohabiting. Regarding the characteristics associated with the death, the most prevalent degree of kinship for the deceased was that of the grandfather/grandmother. Most of the deceased had an oncological disease as a cause of death, and extreme proximity to the deceased is highlighted. The characteristics of the sample and the circumstances of bereavement are shown in Table 1. --- Procedure This study is an exploratory study with a cross-sectional quantitative design. Through the online link, participants completed the informed consent form, which presented the study objectives, who could participate, what would be asked for, the anonymity and confidentiality of data, the voluntary nature of participation, and fact that participating in the study may carry the risk of evoking painful memories and emotions. No financial rewards were provided to participants for their involvement in the study. After submitting the answers to the questionnaire, they were provided with the contact details of the psychological support line SNS 24 (Health Care Line) and of the grief unit in public hospitals across the country. The sampling method was non-probability snowball sampling, i.e., participants were asked to identify or invite other bereaved individuals, but as the study was publicized on social media, anyone who met the inclusion criteria was eligible. Sample collection for this study was initiated in October 2020 and completed in March 2022. The sample of the present study was composed of bereaved people who lost a close person throughout the pandemic period2. Those who agreed to participate and met the following inclusion criteria were included: 1) Being aged 18 years or older; 2) Loss of a person considered close during the pandemic period; 3) Death occurred during the pandemic period by COVID-19, after March 16, 2020. This study is part of a larger national project focused on the impact of bereavement on the SARS-CoV-2 pandemic. This project was approved by the Ethics Committee of the Administração Regional de Saúde Centro (nº 55/2020) and Alentejo (5/CE/2021). --- Instruments --- Sociodemographic and situational questionnaire This questionnaire was designed within the scope of this research to collect information about the socio-demographic characteristics of the participants (e.g., sex of the bereaved, age, nationality, professional situation) and the characteristics/circumstances of the death (e.g., cause of death, proximity to the deceased, degree of kinship). --- Perception of limitation in funeral ceremonies Two items constructed within the scope of the study were used to assess the individual's perception of the limitations imposed by the restrictions on funeral ceremonies. One perception referred to performing a specific funeral ceremony and the other to the fulfillment of the deceased's wishes, i.e., the perception of limitation in performing the present body ceremony and the perception of limitation in fulfilling the wishes expressed by the deceased about the funeral ceremonies. The items were answered on a scale with the following response categories: none, little, some, a lot, extreme limitation, and not applicable. The 'does not apply' option of these variables was recoded to 'no limitation'. --- Alternative mourning rituals Participants were asked how satisfied they were with their use of any of the following examples of AMR: paying tribute on social media, lighting candles in memory of the deceased person, and using objects of the deceased person. The items were answered on a scale with the following response categories: none, low, moderate, high, extreme satisfaction, and not applicable. The "not applicable" option of these variables was recoded to "no satisfaction", and then two groups were created in each of these variables, i.e., 'did' or 'did not do' certain AMR. The content of the items pertaining to the perception of limitations in funeral ceremonies and alternative mourning rituals was developed based on a review of the relevant literature on mourning rituals and on the clinical expertise of the research team. The items were carefully crafted to encompass the diversity of these rituals, and feedback was retrieved from bereaved individuals regarding the clarity and relevance of the items. --- Prolonged grief disorder assessment instrumentreduced version (PG-4; Djelantik et al., 2017) To assess the intensity of the grief responses in the grief process, we selected the Reduced version of the Prolonged Grief Disorder Assessment Instrument (PG-4). This instrument focuses on the bereaved person's subjective perception of the frequency of symptoms associated with the mourning process (i.e., intense manifestations of longing and absence, persistent bitterness and resentment towards the loss and life in general, perception of life as empty or meaningless, numbness, or shock). Djelantik et al. (2017) statistically analysed the 13 items of the PG-13 (created by Prigerson et al., 2009) and highlighted 4 items that statistically identify risk indicators of prolonged grief (e.g., "I miss and miss the person I lost", "My life is empty or meaningless without the person I lost") answered on a scale of 1 (never) to 5 (always). The reduced version of this instrument (i.e., PG-4) was used due to the time post-mortem may include less than 6 months. The overall score (i.e., the sum of the items) was used. In the present sample, Cronbach's alpha was 0.86. --- Statistical analysis Firstly it was assessed the presence of missing values, followed by a descriptive analysis of the sample characteristics and of the responses using measures of central tendency (mean), dispersion (standard deviation) and distribution (skewness and kurtosis). The analyses were conducted in SPSS. First, correlations were performed to the main variables of the study to explore the relationship between the variables (Table 2). The magnitude of the correlations was analyzed using Pearson's coefficient, using Cohen (1988) criteria: weak (r < 0.30), moderate (r between 0.30 and 0.49) and strong (r > 0.50). Second, to examine the moderating effect of the achievement of AMR (Fig. 2) six moderation models were tested using the macro for SPSS-PROCESS (Hayes, 2018). Perceptions of limiting restrictions (perceived limitation in performing present body ceremony; perceived limitation in fulfilling the wishes expressed by the deceased person regarding funeral ceremonies) were entered as independent variables, and the intensity of grief responses as dependent variable. The moderator variables corresponded to the AMR (paying tribute on social media, lighting candles in memory of the deceased person and using objects of the deceased person). Thus, for each independent variable, 3 moderations were tested. The effects were analyzed using the bootstrapping procedure. Confidence intervals (CI) are considered significant if they do not include zero. A significance level of 0.05 was considered. --- Results Table 2 shows the results of the correlations with the main variables of the study. The results indicated a positive and significantly strong correlation (Cohen, 1988) between the perceived limitation in performing the present body ceremony and the perceived limitation in implementing the wishes expressed by the deceased person in relation to the funeral ceremonies. The perception of limitations in performing the funeral ceremony was positively and significantly weakly correlated with the intensity of grief responses. The perception of limitation in implementing the wishes expressed by the deceased person regarding the funeral ceremonies proved to be positively and significantly weakly correlated with the intensity of grief responses. As regards the moderation analyses, three moderation models were tested for the variable perceived limitation in performing the ceremony (Table 3). Model 1 considered as moderator whether or not to paying a tribute in social media in the association between the perception of limitation in performing the present body ceremony (VI) and the intensity of grief responses. Results suggested that the model proved to be non-significant, explaining 4.27% of the variance of the bereavement response intensity results (F(3, 223) = 3.32, p = 0.02, R 2 = 0.04). There was no significant interaction effect, pointing to the lack of a moderating role of the variable performing tribute in social media in the relationship between VI and intensity of grief responses (VD). However, VI was found to have a statistically significant effect on the SD. Model 2 considered as moderator whether or not candles were lit in memory of the deceased person, in the association between the perceived limitation in performing a present body ceremony (VI) and the intensity of grief responses. The results suggested that the model proved to be non-significant, explaining 3.3% of the variance in the results of the intensity of grief responses (F(3, 223) = 2.54, p = . 06, R 2 = 0.03). There was no significant interaction effect, pointing to the lack of a moderating role of the variable lighting candles in memory of the deceased person in the relationship between VI and the intensity of grief responses. Model 3 considered as moderator the use or nonuse of objects of the deceased person in the association between the perceived limitation in performing the present body ceremony (VI) and the intensity of grief responses. The results suggested that the model proved to be significant and explained 8.83% of the variance of the results (F(3,223) = 7.20, p = 0.00, R 2 = . 09). The existence of a negative and significant interaction was observed between VI and using objects of the deceased person (Moderator variable). The existence of the moderating effect of using objects of the deceased person, suggests that the effect of VI on the intensity of grief responses is significantly different depending on whether or not the bereaved used objects of the deceased person. More specifically, for those who used the deceased's objects, the relation between the perceived limitation in performing the bodily ceremony was not significantly related with the intensity of the bereavement responses. On the other hand, for those who did not use this alternative form, higher levels of perceived limitation were associated with greater intensity of grief responses (Fig. 1). Model 4 considered as moderator whether or not paying a tribute in social media, in the association between the perception of limitation in fulfilling the wishes expressed by their deceased in relation to funeral ceremonies (VI) and the intensity of grief responses. The results suggested that the model proved to be significant and explains 9.61% of the variance of the results (F(3,223) = 7.90, p = 0.00, R 2 = 0.10). From the analysis of Table 4, it was observed the existence of a negative and significant interaction between (VI) and performing tribute on social media (moderator variable). The existence of the moderating effect of paying tribute in social media suggests that the effect of VI on the intensity of grief responses was significantly different depending on whether or not the bereaved performed tribute in social media, this relationship being graphically presented through Fig. 2. More specifically, for those who performed the alternative form of tribute on social media, the relationship between the perceived limitation in fulfilling the wishes expressed by their deceased regarding funeral ceremonies was not significantly related with the intensity of grief responses. In turn, for those who did not perform the funeral ceremonies, higher levels of perceived limitation were associated with more intensity in the grief response (Fig. 2). Model 5 considered as moderator whether or not lighting candles in memory of the deceased person in the association between the perceived limitation in fulfilling the wishes expressed by the deceased in relation to funeral ceremonies (VI) and the intensity of grief responses. The results suggested that the model proved to be significant and explained 8.82% of the variance of the results (F(3,223) = 7.19, p = 0.00, R 2 = 0.09). From the analysis of Table 4, the existence of a negative and significant interaction between VI and lighting candles in memory of the deceased person (moderator variable) was observed. The existence of the moderating effect of lighting candles in memory of the deceased person suggests that the effect of VI on the intensity of grief responses was significantly different depending on whether or not the bereaved lit candles in memory of the deceased person, and this relationship is presented graphically through Fig. 3. The results show that for those who lit candles in memory of the deceased, the relationship between the perceived limitation in fulfilling the wishes expressed by the deceased in relation to the funeral ceremonies was not significantly related to the intensity of grief responses. On the other hand, for those who did not perform the funeral ceremonies, higher levels of perceived limitation were associated with more intensity of grief responses (Fig. 3). Model 6 considered as moderator the use or non-use of the deceased person's objects in the association between the perceived limitation in implementing the wishes expressed by the deceased in relation to funeral ceremonies (VI) and the intensity of grief responses. The results suggested that the model proved to be significant, explaining 10.48% of the variance in the results of the intensity of grief responses (F(3, 223) = 8.71, p = 0.00, R 2 = 0.10). However, there was no significant interaction effect, pointing to the lack of a moderating role of the variable using objects of the deceased person in the relationship between VI and the intensity of grief responses. --- Discussion In this study, we aimed to study the impact of perceived limitations in funeral ceremonies during the pandemic and the moderating effect of AMR. Concerning the first objective, results confirm the hypothesis that higher levels of perceived limitations in funeral ceremonies were associated with a higher intensity of early PGD symptoms. This aligns with existing research that underscores the pivotal role of funeral ceremonies as cultural and psychological anchors, as organizers of the farewell process and important for grief elaboration (Albuquerque et al., 2021;Mitima-Verloop et al., 2021). Also, this finding highlights the need for a more comprehensive understanding of how cultural and social factors affect the grieving process. Moreover, our findings shed light on the connection between the inability to conduct present body ceremonies and the perception of limitations in fulfilling the deceased's wishes concerning funeral ceremonies. Present body ceremonies are often deeply emotionally charged events where mourners have the opportunity to physically see and be near the deceased's body. These ceremonies may provide a tangible connection between the living and the deceased, and when such ceremonies are not possible, individuals may feel that they are falling short of providing the level of respect and honor that they believe the deceased desired. Also, many cultural and religious traditions emphasize the importance of specific funeral rituals (e.g., Arslan & Buldukoğlu, 2023;Burrell & Selman, 2020), including present body ceremonies, as a way to show respect for the deceased. When these rituals cannot be carried out, individuals may fear that they are failing to adhere to these cultural or religious expectations, thereby not fulfilling the deceased's wishes. The restriction of such rituals can prompt heightened distress, emphasizing the need to consider these emotional nuances in bereavement support. Regarding the second objective, data from the present study supported the hypothesis that the performance of Alternative Mourning Rituals (AMR) lessened the strength of the relationship between perceived limitations in funeral ceremonies and the intensity of early Prolonged Grief Disorder (PGD) symptoms. This finding can be explained by the therapeutic and coping mechanisms that such alternative rituals offer. These rituals allow mourners to express their feelings, share memories, and find validation, understanding, and companionship in a supportive environment with friends and family, fostering a sense of community and shared experience and reducing isolation (Burrell & Selman, 2020;Cardoso et al., 2020;Gabriel et al., 2021). Also, AMR may entail personalized rituals that reflect the unique relationship the bereaved had with the deceased. This may foster the creation of new meanings and narratives surrounding the loss and reduce the sense of unfulfilled expectations derived from the restrictions in funeral ceremonies (Mergulhão, 2020;Meyer, 2016). Engaging in AMR demonstrates adaptability and resilience (Worden, 2018), as it implies the ability to navigate challenging circumstances and find creative solutions to honor the deceased (Cardoso et al., 2020). In consonance with contemporary research (Cardoso et al., 2020;Mergulhão, 2020;Meyer, 2016;Worden, 2018), our study underscores the remarkable capacity of individuals to adapt and find alternative, meaningful ways to accomplish their needs of tributing the deceased and sharing their grief during the restrictions imposed by the pandemic. Alternative rituals highlight the flexibility and creativity of the human capacity to mourn and remember loved ones, even when Fig. 2 Effect of the tribute in the social media on the relationship between the perception of limitation in fulfilling the wishes expressed by the deceased concerning the funeral ceremonies and the intensity of grief responses Fig. 3 Effect of lighting candles in memory of the deceased person on the relationship between the perception of limitation in fulfilling the wish expressed by the deceased regarding funeral ceremonies and the intensity of grief responses traditional avenues are restricted or unavailable (Cohen & Katz, 2015;Prudenzi et al., 2022). However, results show that distinct mourning rituals (i.e., paying tribute on social media, lighting candles, and using the deceased's objects) have varying impacts on moderating the effect of restrictions on grief symptoms. This variation in impact can be explained by their unique characteristics and the emotional needs they fulfill. The symbolic and collective mourning rituals of using social media and lighting candles in memory of the deceased emerged as an influential moderator, buffering the relationship between perceived limitations in fulfilling the deceased's wishes and the intensity of grief responses. This means that these behaviors may play a restorative function in the face of the impossibility of fulfilling the deceased's wishes (Meyer, 2016). Social media and candle lighting rituals may serve as therapeutic outlets, allowing mourners to connect with others and reduce the emotional distress (e.g., Christensen & Gotved, 2015) possibly caused by unmet expectations and restrictions on traditional funeral ceremonies. Social media platforms offer an expansive and accessible network of friends, family members, and acquaintances who can provide emotional support and understanding during the grieving process (e.g., Costa et al., 2022;Sapalo, 2023). When individuals perceive limitations in fulfilling the deceased's wishes, the support received from social media connections can mitigate feelings of isolation and emotional distress (Alexis-Martin, 2020;Costa et al., 2022;Sapalo, 2023). Furthermore, social media provides a platform for individuals to express their grief openly and publicly and to honor the deceased by carrying forward their legacy, sharing memories, life stories, and their impact on others (Silva & Silva, 2021). It can also facilitate the creation of virtual rituals and memorialization practices (Gilbert & Horsley, 2021). Moreover, the act of sharing tributes on social media platforms can be used to maintain the connection in the digital realm and to continue to care for the loved one (Johnson & Wijdicks, 2018). In short, when circumstances restraint fulfilling the deceased's wishes, social media provides an alternative channel for such expression, involving emotional sharing, continuing bonds, community building, and preserving the deceased's legacy. Additionally, the act of lighting candles can contribute to lessen the distress linked to unfulfilled wishes in multiple ways. Lighting candles holds deep cultural and symbolic significance in many mourning traditions and is often accompanied by personal reflection, prayer, or meditation, which can provide comfort for the bereaved (Sedakova, 2015). Furthermore, the act of lighting a candle engages the senses, such as watching the flame, which can be soothing and grounding (Darbonne, 2023). It provides a tangible and sensory experience that allows individuals to connect with their emotions and memories of the deceased. It may also offer a dedicated time and space for mourners to connect and remember their loved one and share their thoughts and emotions. Additionally, candle lighting can be a communal activity, bringing together friends and family members to participate in the ritual (Sedakova, 2015), fostering a sense of togetherness and support. This shared experience can provide a supportive community that helps individuals cope with the emotional distress arising from unmet expectations and restrictions on traditional funeral ceremonies. On the other hand, the use of the deceased's objects surfaces as a distinct and important coping mechanism but with a different moderating effect. This individual mourning practice seems to be important in mitigating the limitation stemming from the absence of present body ceremonies. Deceased's objects hold personal significance and are tangible/concrete reminders of the person who has passed away (Wakenshaw, 2020). When individuals interact with these objects, they can physically touch and hold something that was part of their loved one's life. This concrete connection can help fill the void left by the absence present body ceremonies, establishing a tangible link to the loved one. Also, the use of objects that belonged to the deceased can instill a sense that the loved one continues to be an integral part of the daily life of the bereaved, offering a source of emotional and psychological comfort (Wakenshaw, 2020). Likewise, the deceased may have articulated specific preferences regarding the utilization or preservation of particular objects. Using these objects in accordance with the deceased's wishes, may provide the bereaved with a sense that they are honoring the person's choices, perpetuating their legacy, and paying tribute to their life. In summary, the use of the deceased's possessions can function as both a physical and emotional connection, aiding individuals in maintaining their bond with their loved one, fulfilling their wishes, and finding comfort in the absence of traditional ceremonies (e.g., Goldstein et al., 2020;Wakenshaw, 2020). --- Clinical implications The clinical implications of our findings are multifaceted, resonating with contemporary perspectives on grief and resilience (Kashdan & Rottenberg, 2010;Walsh, 2020). It underscores the need for clinicians to acknowledge the diverse ways in which individuals grieve and recognize the therapeutic potential inherent in mourning rituals (Kashdan & Rottenberg, 2010;Walsh, 2020). Specifically, findings from this study contribute to identifying the role of Alternative Mourning Rituals (AMR) in order to promote the bereaved's flexibility and mitigate the deleterious effect of ceremonies and rituals restrictions on bereavement outcomes. Considering that people were affected differently by restrictive measures amid the COVID-19 pandemic, clinicians should take into consideration the specific therapeutic functions of mourning rituals that better meet the bereaved's particular needs. For example, for those grappling with guilt tied to unfulfilled wishes of the deceased, interventions that encourage and facilitate public and symbolic forms of tribute, such as participation in social media memorials, offer solace and a sense of connection. These strategies provide a space for individuals to express their love and devotion to the departed while finding comfort in shared grief experiences. When confronted with the passing of a loved one, people may find it hard to accept the finality of the event. Promoting rituals that incorporate concrete representations of the deceased (e.g., such as present body ceremonies, visiting the grave) can provide a bridge between the abstract concept of death and the tangible world and help individuals understand the finality of death. --- Limitations and suggestions for future studies Despite the strengths of this study, it also has some limitations. One of them is the fact that the sample is not representative of the Portuguese sample (given that snowball sampling was used), namely, in terms of distribution between urban and rural areas. The sample was collected by convenience, and most of the participants were relatives of patients followed in palliative care at a central hospital, in an urban area. In addition, as is common in samples of bereaved people, the female gender is overrepresented in our sample, reflecting differences in coping styles with grief (Walsh, 2020). Thus, we questioned whether, in a rural and male sample, the function of mourning practices would be identical. Another limitation concerns the fact that we have not addressed the influence of religiosity on mourning practices. Taking into account the importance of this variable, it would be relevant to verify to what extent aspects such as faith professed by the bereaved or whether the person is practicing or not interfere with the moderating effect of AMR. Likewise, relational aspects such as previous relationships with the deceased and the quality of social support are also expected to interfere in this relationship between perceived restrictions and AMR. Also, it would be interesting to verify, through a qualitative study, the meanings attributed by the bereaved themselves to these tribute practices. Finally, future studies should focus on characterizing mourning rituals, namely in terms of frequencies and associated factors (e.g., time post-loss). --- Data availability The dataset generated during and/or analyzed during the current study are available from the corresponding author on reasonable request. --- Declarations Competing interests The authors report there are no competing interests to declare. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http:// creat iveco mmons. org/ licen ses/ by/4. 0/. Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Lines of Action for Sexting Prevention and Intervention: A Systematic Review

Sexting has become a new form of intimate interaction in line with contemporary communication methods. This phenomenon often leads to positive outcomes, but it can also have negative repercussions depending on the situation, such as the context of the relationship, and whether it is consensual or coercive. Despite this, the main types of sexting behaviors (sending, receiving, and third-party forwarding) must be addressed in order to promote safe and healthy practices. However, the approach to tackling this phenomenon remains unclear. This systematic review sought to summarize the lines of action proposed or conducted in the scientific literature to address sexting, to help researchers and educators create and evaluate effective programs. A systematic search of 21 databases was conducted; only articles relating to sexting education, prevention, and intervention among child and adolescent populations were considered. In total, 456 articles were identified, 91 of which were included for the purposes of this research. The results highlighted a need to respond to the aforementioned sexting behaviors and to tackle the resulting conflict situations. Although interventions across different areas are recommended (e.g., health, family, policies, legal advice, law enforcement, technology experts, and even society as a whole), most studies agree that school is the most practical setting for intervention. Thus, the 15 lines of action identified in this systematic review must all be considered to effectively address sexting in childhood and adolescence.

Introduction Social networks and digital media have become a major part of our daily lives, exerting an increasingly significant impact on individuals in general and, more specifically, on adolescents (Smith et al., 2016). Digitally driven communication fosters positive interactions and has multiple benefits, but it can also bring about new challenges (Englander & McCoy, 2017). The emergence of online communication has been linked to the global rise in messages with sexual content (Sweeny & Slack, 2017). Today, adolescents can explore their sexuality in new ways, redefining and normalizing more recent types of intimate relationships such as sexting-the sharing of self-produced sexual material through electronic means (Barrense-Dias et al., 2017;Schubert, 2014). Concerns about this phenomenon have grown, and it has attracted considerable attention from researchers, families, teachers, schools, and the media (Anastassiou, 2017;Gewirtz-Meydan et al., 2018;Van Ouytsel et al., 2015). This has occurred as a consequence of its potential negative impact and the effects it can have on adolescent well-being, where sexual content is disseminated without consent or where teens feel peer or partner pressure to engage in sexting behaviors (Klettke et al., 2014;Olivari & Confalonieri, 2017;Schubert, 2014). Even teachers agree that sexting could cause classroom disruption (O'Bannon & Thomas, 2014). The sexting phenomenon may play an influential role in the process of building new relationships as well as in the development of adolescents' sexual behaviors (Ringrose et al., 2012). Therefore, identifying the institutions that need to get involved and the types of actions that need to be taken is key to ensuring effective prevention and intervention in these areas. Thus, this systematic review analyzes the scientific evidence that helps identify the lines of action to address sexting. --- Definition and Prevalence of Sexting There is a lack of general consensus around the definition of sexting. Definitions vary depending on the type of behavior included, alluding to active sexting (such as sending or third-party forwarding) and passive sexting (receiving a message directly from the creator or via an intermediary). They also vary according to the content of the messages (sexual pictures, videos, or text) and the degree of sexual explicitness (suggestive or explicit) (Barrense-Dias et al., 2017). Therefore, the most restrictive definitions exclusively refer to sending sexually explicit pictures (Choi et al., 2016;Marume et al., 2018), whereas the most comprehensive definitions also cover other types of behavior, for example, content dissemination (Mitchell et al., 2012;Villacampa, 2017). In this context, sexting encompasses the sending, receiving, and forwarding of suggestive and explicit sexual pictures, videos, or text messages via cell phones, the Internet, or other electronic means (Mitchell et al., 2012). Because sexting is an evolving concept that has become increasingly complicated (Van Ouytsel et al., 2018), each study and the sexting behavior must be analyzed, as the action to be taken may vary depending on the behavior displayed. The estimated number of adolescents engaging in sexting is consistently definition dependent (Barrense-Dias et al., 2017). In a recent meta-analysis (Madigan et al., 2018), the average prevalence of sending sexual content was 14.8%; receiving sexts was 27.4%; forwarding a sext without consent was 12.0%; and receiving a forwarded sext was 8.4%. In recent years, sexting rates among youth have seen a rise with increasing age, and no significant gender differences in the rate of sending or receiving sexts have been observed (Madigan et al., 2018). --- The Need to Address Sexting The practice of sexting is characterized by its psychological, social, and behavioral consequences (Klettke et al., 2014), which can lead to ethical and socio-moral conflicts alongside other concerns about the privacy and protection of personal content (Schubert, 2014). Results of a recent meta-analysis suggest that the exchange of sexual messages, photographs, and videos through technological devices is associated with sexual behavior (sexual activity, multiple sexual partners, lack of contraception use, etc.) and mental health issues (delinquent behavior, anxiety/ depression, alcoholism, drug consumption, smoking, etc.), especially in younger adolescents (Mori et al., 2019). The consequences of sexting may affect the physical and psychological health of those involved, and adolescents may end up experiencing peer pressure and emotional difficulties (Olivari & Confalonieri, 2017;Van Ouytsel et al., 2015). However, most studies indicate that these relationships are cross-sectional, and the fact that sexting presents as a problematic behavior would seem to depend on the situation, such as the context of the relationship, and whether it is consensual or coercive (Temple et al., 2019). Although the bulk of the research focuses solely on consented parties (sending and/or receiving this type of content), the most detrimental action, and therefore the most important when trying to understand the consequences behind this phenomenon, would be the forwarding of sexual content by third parties (Livingstone & Görzig, 2014;Strassberg et al., 2017). A possible explanation is that sexual content can be spread quickly without consent, reaching undesired recipients, thus increasing its audience and affecting the victim's reputation (Van Ouytsel et al., 2014a, 2014b). Consequently, most efforts should be directed in this area to prevent and effectively intervene in sexting behaviors. As a result of this dissemination, sexting is also associated with other potential risks which can aggravate its possible consequences, such as blackmail, extortion, bullying, and cyberbullying (Döring, 2014;Kopecký, 2015;Medrano et al., 2018;Montiel et al., 2016;Strassberg et al., 2013;West et al., 2014;Woodward et al., 2017). The gender dynamics that arise from this phenomenon are also noteworthy. Differences in the roles of sexting are observed, and the different practices do not seem to affect boys and girls in the same way. Boys are perceived as those who ask for photographs, whereas girls are seen as those responsible for setting the boundaries (Symons et al., 2018). Moreover, girls usually experience a damaged reputation and tend to suffer the consequences of sexting more than their male peers, the latter even experiencing positive effects which can boost their popularity (Cooper et al., 2016;Dobson & Ringrose, 2016;Symons et al., 2018;Wood et al., 2015). In all cases, a robust response to any sexting-related behavior (sending, receiving, and third-party forwarding) is highly recommended. It is clear that the non-consensual forwarding of content to third parties is a type of behavior that must be avoided, and prevention strategies must be taught (Van Ouytsel, et al., 2014a, 2014b). However, young people also need to know how to act when this type of content is received (Mitchell et al., 2012); how to send sexual content safely, if this is indeed the intention; and how to fend off any attempts at peer pressure (Wurtele & Miller-Perrin, 2014). Thus, this phenomenon is seen as a challenge for educational institutions and teaching professionals (McEachern et al., 2012), given that incidents brought about by sexting can have a negative impact at school (Van Ouytsel et al., 2014a, 2014b, 2015). Although prevalence is higher outside of school walls, sexting also occurs during school hours (Schubert, 2014). What is more, sexting outside of this environment may also have an impact within the school context (McEachern et al., 2012). Because this phenomenon has the power to influence the interpersonal relationship building process, not to mention adolescent sexual development in general (Ringrose et al., 2012), the classroom is an ideal environment for educating individuals on how best to use Information and Communications Technology (ICT) and, more specifically, prevent any negative consequences of sexting (Mura et al., 2014;Theodore, 2011). Educating young people about sexting in schools has the potential to reach far more adolescents, as many young people do not learn about sexuality or this new reality at home. Furthermore, teaching professionals can train and inform parents, fostering positive relationships and building a strong school community that guarantees the continuity of education received by students in both key settings: home and school (Van Ouytsel et al., 2014b). Specifically, teaching professionals can play a crucial role when it comes to addressing this phenomenon proactively and when taking specific preventive actions to address the consequences of sexting (Bhat, 2018;Kopecký, 2012). --- Research Question Despite the importance of preventing the potential negative consequences of sexting (Van Ouytsel, et al., 2014a, 2014b), information on how to do this effectively remains scarce. As such, there is an obvious need to develop strategies based on scientific research findings (Livingstone & Smith, 2014), identifying areas and lines of action that can help researchers and educators create and evaluate programs to successfully address sexting. In an effort to bridge this gap, this study aims to systematically describe the available scientific evidence outlining the effective lines of action to tackle sexting. To this end, the present review is guided by the following question: What are the types and frequencies of proposed lines of action for sexting? --- Method --- Inclusion and Exclusion Criteria This systematic review includes all articles published up until 2018 that meet a predetermined set of inclusion and exclusion criteria. The specific criteria to determine suitable studies for inclusion in the review were: a Studies with a target or participant population of children or adolescents aged up to 19 years. b. Studies that consider sexting as their phenomenon of interest. c. Studies that include information about sexting education, prevention, and/or intervention. The specific criteria to determine studies that should be excluded from the review were: a. Studies with an adult target or participant population. b. Studies whereby the topic of interest is a sexual phenomenon other than sexting, such as grooming, sexual abuse, or pornography. c. Duplicate articles. d. Articles with insufficient information because the full text is not available. --- Search Strategy The search strategy used for this systematic literature review was based on the PRISMA statement (Urrútia & Bonfill, 2010). , child, minor, adolescent, teen, youth, student, prevention, education, and intervention. The following search query was entered for the title, abstract, and key words: "Sexting AND (child* OR minor OR adolesc* OR teen* OR youth* OR student*) AND (prevention OR education OR intervention)." Before selecting this strategy, other attempts were made, such as "sexting AND adolesc* AND (prevention OR intervention)." The results were examined to find the right balance between sensitivity and specificity. Database searches were conducted up to September 2018. --- Data Coding and Analysis Article coding was carried out in two phases using an analysis sheet. During the first phase-the abstract screening phasea check was run to ensure that the article abstracts met the inclusion criteria and not the exclusion criteria. To do so, the following data were collected: database, year of publication, authorship, journal/publication, article title, inclusion criteria (a) and (b), and exclusion criteria (a), (b), and (c). The second phase-full-text eligibility-was carried out on articles that only met the previous inclusion criteria. Checks were run to verify that they also met inclusion criterion (c) and that they did not meet exclusion criterion (d). In this case, the whole publication was analyzed: type of study, area of study (journal/editorial field of study), language, country (country of the participating sample or, if not, the first author's home institution), objective(s), methodology, recipients, sample, definition of sexting, instrument, instrument characteristics, evidence of action, type of action, evaluation of action, area of action, and results. Only those articles clearly stating their own definition of sexting were taken into account. Review articles describing the definitions adopted in other articles without taking a personal stance were not considered. In the case of review articles, only recommendations pertaining to the article were considered, and proposals collected from the analyzed articles were discarded. Coding was undertaken by the principal investigator. Subsequently, 57.2% of the articles were selected at random and codified equally and independently by a second assessor, easily exceeding the 20% recommended minimum (García-Moya et al., 2018). During this phase, the sexting definitions found in the articles under study were also categorized, leading to the following category system: specific behaviors by definition (distribution/exchange; sending; sending and receiving; sending, receiving, and forwarding), the type of content (text message; pictures; text messages or pictures; pictures or videos; text messages, pictures or videos; not specified), and the degree of sexual explicitness (explicit; suggestive or explicit; not specified). The reliability level was high. The percentage of agreement in the abstract screening phase was 91.3%, reaching 92.1% in the full-text eligibility phase. Disagreements were discussed and resolved in a consensual manner. The articles selected were downloaded using the Mendeley 1.19.3 software program. Figure 1 shows a summary of the selection process. A total of 456 articles were identified for the systematic review. The abstract was taken into account across all reviews, and 308 articles were excluded as they met exclusion criteria (a), (b), or (c). The full text of the remaining articles was analyzed, and 57 articles were excluded as they did not meet inclusion criteria (c) or they met exclusion criteria (d). Therefore, 91 articles were included in this systematic review. An overview of the general characteristics corresponding to these studies is provided in Appendix. Once the included articles had been determined, the areas and lines of action found in each article were categorized. The category system resulting from categorizing the areas of action is shown in Table 1. Similarly, the category system resulting from categorizing the lines of action is shown in Table 2. The sum of the areas, lines of action, and relevant information found in the articles were also categorized by an external reviewer. The reliability level was high (percentage of agreement at 84.2%). Disagreements were discussed and resolved in a consensual manner. --- Results --- Overview of the General Characteristics of the Studies The general characteristics analyzed in the articles were: year of publication, geographical area of origin, subject area, definition of sexting, type of action recommended, and area of action where intervention is deemed necessary. Regarding year of publication, the reviewed articles were published between 2009 and 2018, as no articles pre-2009 were found on any of the 21 databases. Notably, an increase in publications was observed in 2014; however, wide frequency variability is found and a clear pattern cannot be determined. In terms of geographical area of origin, 52.2% of studies were conducted in North America, 27.8% in Europe, 10% in Oceania, 4.4% across several continents, 3.3% in South America, 1.1% in Africa, and 1.1% in Asia. Regarding subject area, 39.6% of studies were conducted in the field of health, 26.4% in psychology, 20.9% in other social science disciplines, 11% in education, 8.8% in sociology and political sciences, 4.4% in the field of communication, and 3.3% in the discipline of law. The definition of sexting varies depending on the specific behavior at play, the type of content, and the degree of sexual explicitness. In terms of the different behaviors, 39.2% of articles only refer to sending, 23% generally define sexting as a sharing or exchange process, 17.6% refer to sending and receiving, and 16.2% identify the three behavior types: sending, receiving, and forwarding. The type of content behind these messages also varies. Specifically, 29.7% of articles mention text messages, pictures, and videos; 29.7% refer only to pictures; 28.4% refer to text or picture messages; 6.8% refer to sexual content in general but do not specify the content; 2.2% refer to pictures or videos; and 2.2% refer only to text messages. Lastly, 48.7% include suggestive and explicit content; 43.2% include only explicit content; and 8.1% do not specify the type of sexual content behind the definition used (Table 3). In terms of the type of action recommended, 7.7% of articles recommend taking actions to address and prevent the potential consequences of sexting, but do not include any interventions or suggest any strategies to make this happen; 85.7% of articles do propose specific strategies that can be effective when addressing this phenomenon, but do not include any interventions; and 6.6% present specific interventions to tackle sexting. Regarding the area of action where intervention is required, 86.8% of articles indicate that intervention should be school-led. Next, 20.9% state that the family should intervene, whereas the same percentage of articles (20.9%) report that family intervention must also involve the school. Similarly, 19.8% state that action should be taken from a healthcare perspective; 13.2% from a political perspective; and 7.7% from across all areas in general. A total of 5.5% of articles state that family-led involvement should be health based, whereas the same percentage (5.5%) report how legal advice is required to lend a legal perspective on this phenomenon. Moreover, 4.4% of articles call for the participation of law enforcement agencies, and 2.2% note that collaboration from technology experts is also necessary (Table 1). --- What are the Types and Frequencies of Proposed Lines of Action for Sexting? The collected data have been divided into three different types of information: lines of action, initiatives developed, and main recommendations. Fifteen lines of action emerged after categorizing the strategies identified in the research papers as key aspects of tackling sexting ( In addition to these lines of action, only six articles set out specific initiatives to address sexting: the specific action under the 3rd Spanish Master Plan for the Coexistence and Improvement of School Safety; the Webrangers educational project; the action research project Image.me; a three-level strategic plan; the Sextorsion prevention course; and school assemblies about the risks of sexting. The specific action established under the 3rd Spanish Master Plan for the Coexistence and Improvement of School Safety by the Spanish Government's Ministry of Education, Culture, and Sport; the Ministry of the Interior; and the Ministry of Public Health and Social Affairs contains presentations about the safety issues and risks associated with the use of the Internet to be developed alongside high school students. A Spanish civil guard officer, who is a specialist in New Technology and Risks, delivered an hourlong presentation about the possible risks of Internet use, especially those derived from using social networking sites, such as cyberbullying, grooming, and sexting. After the presentation, students completed an ad hoc questionnaire about their social network involvement. Information was gathered about their usage time or external supervision; the presentation content they found most interesting; and their personal opinions about the role of the Spanish civil guard officer. The impact of the activity on sexting was not evaluated (Martín et al., 2013). The Webrangers education project is delivered in partnership with Google Inc., Palacký University Olomouc, and the NGO Google Education Group. It consists of a peer training program in which students interested in the topic are selected and given full-time training. This project covers risky Internet behaviors and the safe use of this tool to help prevent dangerous online conduct. Case studies are used to train students on the following core topics: cyberbullying, cyber-grooming, sexting, and skills for online interaction. After the training, students must create their own projects to raise awareness through Google Plus, Facebook, the project's Web site, and through workshops and activities for their colleagues and teachers. Information about their evaluation was not reported (Kopecký et al., 2015). Image.me is an action research project about sexting prevention. It uses social theater with young people as preventive medical care, focusing on peer education through media and digital literacy. This combination encourages critical thinking and promotes collaborative work between classmates. These activities are part of a wider research project about theater and scientific communication led by the Catholic University of Milan. Social theater was used as a form of social care and online risk prevention. Three art scenes tailored to the project's target audience were chosen in an attempt to envisage how to address sexting effectively. One of the results was the creation of a pet-puppet used to get to know young people at schools, clubs, and other informal contexts. Videos were also made to raise young people's awareness about the presence of sexting in their communities. Social theater was also used to communicate the research findings at the end of the project. An art scene was designed and used to discuss the information gathered, making it easier to understand and engage with. Information on its evaluation was not reported (Ferrari et al., 2016). The three-level strategic plan describes specific activities that schools can implement to tackle cyberbullying, sexting, and other risk behaviors on social media. The three-level model aims to meet the common needs of all students, the specific needs of some students, and other more specific and complex needs. Level 1 meets the general needs. It aims to provide a definition of the phenomenon and set out regulations planned for and by the education community, which also covers how to handle a conflictive sexting situation. In addition, as part of the school curriculum, the whole institution should be given training about this phenomenon and its effects in order to safely address any kind of online behavior. Assessment twice a year is also important. Level 2 offers strategies for students at risk of becoming a bully or a victim. Prevention groups are formed to work on specific skills according to the potential participants' needs. Finally, Level 3 is delivered to students who are already actively involved in sexting and have more complex needs. In this case, intervention should focus on their direct needs, such as individual advice geared toward specific abilities, meetings with family members, and disciplinary and/or legal action. In general, the activities need to stress the importance of educating those involved about the Internet and its dangers. Information about its evaluation was not reported (Davis & Schmidt, 2016). The Sextorsion prevention course is delivered in high schools to teach students how to practice safe sexting. The learning methodology combines traditional lectures which provide an overall description of the topic with active learning, and directly engages students in the learning process. The course content includes the conceptualization and characteristics of sexting and sextortion, its associated risks, empathy toward the victim, legal consequences, safe practices, and measures and protocols to deal with the phenomenon. In particular, active learning was carried out by simulating different sexting and sextortion scenarios, encouraging students to be more independent and building their ability to search for relevant information related to sexting and sextortion. Different resources such as videos, group discussions, cases analyses and simulations, and group reflections were used. Regarding assessment, students answered a pre-and postcourse questionnaire about their knowledge of the topic and how satisfied they were with the course. However, the impact of the activity was not reported (Palop et al., 2016). Finally, school assemblies were designed to educate high school pupils on the risks of sexting. The specific content of these assemblies was not provided. However, four years later, sexting patterns (except third-party forwarding) had not changed significantly. Most adolescents had exchanged sexually explicit pictures on their phones, and the common behavioral narratives remained very similar (Strassberg et al., 2017). The previously stated lines of action and initiatives were joined by other notable recommendations for tackling this phenomenon: Specifically, 19% of articles recommend staying away from scare tactics as a tool for intimidating young people; 11.9% recommend avoiding messages that promote the abstinence from and prohibition of sexting given their low level of effectiveness, adopting a more educational than authoritarian perspective; and 9.5% recommend not blaming and judging the victim or those who partake in this practice. Furthermore, 9.5% of articles highlight the need to start taking action early on in school and in preadolescence, and 7.1% recommend sexting assessment in schools to establish a baseline and to be able to promote strategies and actions based on the results obtained. Finally, 11.9% of articles recommend evaluating the impact of these strategies post-implementation to determine their effectiveness. Thus, the practices could be evidence based, promoting continuous improvement and adapting the strategies to the intervened context. --- Discussion Sexting has shaped itself into a new form of adolescent sexual exploration and expression (Schubert, 2014). However, it has also become a new challenge that professionals working with children need to understand in order to deal with it effectively (Bhat, 2018;Kopecký, 2012). This systematic review sought to gather information and describe the existing scientific evidence relative to the effective lines of action that address sexting, helping researchers and educators to design and evaluate sexting programs. There is scientific evidence to support the need for sexting intervention. Specifically, these efforts must focus on the different ways in which this phenomenon is experienced and expressed: sending, receiving, and forwarding. The most commonly used sexting definition in the analyzed articles had sending as the most studied behavior. However, this definition does not cover the phenomenon's complexity. Third-party forwarding of sexual content also plays a highly significant role in understanding the consequences of sexting (Livingstone & Görzig, 2014;Strassberg et al., 2017). Thus, it is important to include all three types of sexting behaviors 1 3 (sending, receiving, and third-party forwarding) in order to analyze each one on its own and to be able to identify the necessary actions for each behavior. Studies mainly focus on a particular geographical area (North America) and a specific subject area (Health), meaning that sexting research in other countries and in the educational field must also be encouraged. At a disciplinary level, the focus is primarily placed on the school setting (Livingstone & Smith, 2014;Van Ouytsel et al., 2014b). Furthermore, only six of the 91 articles feature a specific intervention and just one article evaluates the impact of this action. This may be due to the fact that literature and educational campaigns have mainly focused on analyzing sexting as a problem, promoting abstinence, and condemning the practice. Consensual sexting as an intimate means of communication in line with contemporary communication methods must be accepted (Döring, 2014;Strassberg et al., 2017). The development of specific programs that address sexting is the notable line of action. Undertaking both proactive and reactive activities is crucial (Albury et al., 2017). Some examples are: the use of case studies (e.g., Kopecký, 2015;Palop et al., 2016); discussions (e.g., Gregg et al., 2018;Siegle, 2010); educational campaigns, lectures, and workshops (e.g., Dobson & Ringrose, 2016;Hinduja & Patchin, 2012); the creation of information resources, a compilation of best practices (e.g., Döring, 2014;McEachern et al., 2012); real testimonies (Martín et al., 2013;Van Ouytsel, et al., 2014a, 2014b); debates (e.g., Dobson & Ringrose, 2016;Van Ouytsel et al., 2015); and cross-curricular classroom projects (Laguado et al., 2018;Theodore, 2011). --- What are the Types and Frequencies of Proposed Lines of Action for Sexting? Fostering a safe and healthy use of ICT, the Internet, and social networks is also noteworthy. Because adolescents who use their cell phones as their main Internet connection and spend more time connected are most likely to receive sexting requests (Atwood et al., 2017), it is important to teach them how to use technology appropriately. This training should cover personal expectations about digital privacy (e.g., Albury et al., 2017;Soriano-Ayala & González-Jiménez, 2014); control over personal data on the Internet (e.g., Diliberto & Mattey, 2009;Patrick et al., 2015); safe online behaviors (e.g., Mura et al., 2014;O'Keeffe, 2016); and knowledge of rights and responsibilities when it comes to digital technology (e.g., Gámez-Guadix et al., 2017;Uhler & Smith, 2012). Efforts to incorporate sexting into sex education programs is also a fundamental part of handling this phenomenon, as sexting may be seen as a way to maintain intimate communication with a partner in a healthy relationship (Van Ouytsel, et al., 2014a, 2014b). On many occasions, sexting is used to show a romantic or sexual interest in another person; to build new emotional bonds; to delve deeper into the development of their sexual identity; and merely as another form of sexual activity in a long-distance relationship (Döring, 2014;Walker et al., 2011). Thus, addressing sexting as an integral component of sex education programs provides young people with information about the phenomenon and how to tackle it safely, instead of evading it or encouraging the negative views held by many adolescents about sexting. Given the correlation between sexting and traditional or digital risks, such as bullying and cyberbullying (e.g., Rodríguez-Castro et al., 2017;Woodward et al., 2017), introducing sexting into preventive programs that address other associated risksadopting an integrated approach-is also recommended (e.g., Dake et al., 2012;West et al., 2014). The promotion of sexual ethics is also linked to sex education, namely specific and key aspects that address sexting effectively. Its focus is on developing the necessary skills to build and maintain an intimate and ethical relationship (Walker et al., 2011), such as preventing coercion and pressure in a loving sexual relationship; fostering reflection on the importance of proper consent and real respect for a partner or intimate companion; and maintaining a critical attitude toward the exchange of non-consensual sexual content (e.g., Albury et al., 2017;Wurtele & Miller-Perrin, 2014). In terms of sexual ethics, gender roles and stereotypes must also be considered. Acknowledging the cultural norms and values that underpin social behavior is essential to successfully addressing the phenomena which play out in personal interactions. Thus, it is necessary to understand and question the heteronormative values associated with femininity and masculinity which form part of the digital culture and to determine the dynamics and roles played by individuals who engage in sexting (e.g., Karaian, 2014;Wood et al., 2015). It is particularly important to involve young people in analyzing the power imbalance between genders and the double sexual standard and to avoid the use of stereotypes and blaming women, in the strategies used to address sexting (e.g., Döring, 2014;Van Ouytsel et al., 2014a). Raising awareness about the impact and risks of sexting is also important. Sexting can lead to undesired consequences, which can turn into problematic scenarios alongside other risks such as bullying and cyberbullying (Frankel et al., 2018;Medrano et al., 2018;Ringrose et al., 2012). For this reason, young people need to be aware of the risks. However, we need to remember that, for some people, sexting is a romantic and enriching part of their relationship, although it can be dangerous (Ybarra & Mitchell, 2014). Furthermore, some studies suggest that many adolescents already have a clear picture of the consequences this phenomenon entails, and steps to ban and warn against sexting alone do not work to prevent the potential consequences (Lim et al., 2016). In this systematic review, only one evaluation of the proposed lines of action has been observed, which focuses on the lack of efficacy behind this strategy. It does, however, seem to reduce the extent to which this type of content is forwarded without consent, yet it does not effectively avert other possible negative consequences linked to sexting (Strassberg et al., 2017). Providing training to professionals who work with young people would also help them feel more capable of addressing sexting. It would equip them with the skills to react properly to difficult situations brought about by sexting. Thus, there is a need to stay up-to-date with the apps that adolescents use; discuss sexuality in a professional way (e.g., Van Ouytsel et al., 2014a, 2014b); have the resources to deal with this reality (e.g., Brown et al., 2009); know what sexting is and what drives adolescents to participate in it (e.g., Frankel et al., 2018); and be aware of the ensuing legal and moral obligations (e.g., Schubert & Wurf, 2014). From this perspective, sexting regulations and protocols should be developed in order to provide professionals with a common ground for dealing with this phenomenon. They must be given the necessary tools to act consistently and appropriately, making it easier for pupils to understand the differences between correct and incorrect sexting behavior (e.g., Krieger, 2017;Theodore, 2011). From this perspective and taking into account the other strategies, the adoption of disciplinary or legal measures is crucial in cases where this type of consent is shared non-consensually and where aggressive attitudes are exhibited (e.g., Davis & Schmidt, 2016;Russo & Arndt, 2010); for example, in cases where sexting is associated with bullying (e.g., Van Ouytsel et al., 2014b). Involvement by the entire education community and potential participants is a key aspect when it comes to fostering coherent and stable actions across the different settings that young people move within and between, thus joining efforts and strategies to tackle this phenomenon (e.g., Frankel et al., 2018). The peer group risk factors for sexting also play an important role among adolescents. During adolescence, social status is particularly important (Chalfen, 2009;Ling, 2004), and sexting offers an opportunity to become more popular (Gewirtz-Meydan et al., 2018). It may be seen as a strategic move for adolescents to gain popularity among peers (Baumgartner et al., 2015). Thus, encouraging reflection on social pressure and the need for popularity, as well as being critical toward the content received via the Internet, is fundamental (e.g., Ahern & Mechling, 2013;Wolak et al., 2012). Similarly, the false beliefs that adolescents hold about sexting and the notion that all young people engage in this mainstream phenomenon should also be challenged. Adolescents believe that the messages circulating within their immediate surroundings and the media influence their predisposition to develop sexting attitudes, viewing this phenomenon as a normal practice (Smith et al., 2014). The perceptions and experiences of adolescents also make for a good starting point according to the literature, allowing us to understand the whys and hows of their behavior in order to respond to young people's actual needs (e.g., Livingstone & Görzig, 2014;Murray, 2014). Efforts to improve the school environment are also reported to have a positive effect on resolving difficult situations associated with sexting. Some examples of good coexistence practices include: maintaining high expectations for student performance; offering pupils the opportunity to participate and contribute in class, at school, and in the education community (e.g., West et al., 2014); implementing peer education/coaching (e.g., Ferrari et al., 2016;Siegle, 2010); and promoting student safety at school, for example, by adopting measures that encourage them to report worrying cases of sexting and other negative behaviors without fear of retaliation (e.g., Gregg et al., 2018;McEachern et al., 2012). Furthermore, when responding to the needs of young people, it is important to cater for diversity and to adopt specific measures that acknowledge, address, and integrate the particularities of vulnerable groups (e.g., Brown et al., 2009;Livingstone & Görzig, 2014). Finally, in addition to the discussed lines of action, recommendations are made to address this phenomenon early on in the school cycle, likely because the use of virtual networks increases gradually until the age of 13, when it comes into more general use (Garmendia et al., 2016). Furthermore, sexting is characterized by the developmental stage of adolescents' first romantic or sexual relationships (Fox & Warber, 2013;Van Ouytsel et al., 2016), which highlights the importance of educating young people and relying upon strategies suitable for minors at an early age. Fear tactics and abstinence should also be avoided, as they can make young people increasingly more interested in this practice, without giving them alternative approaches (Gómez & Ayala, 2014). In addition, they do not accurately represent the sexual reality of our contemporary society, preventing us from suggesting strategies to dissuade the negative consequences of sexting among young people (e.g., Döring, 2014). It is also advisable not to judge the victims and individuals who engage in this practice, but rather those who inflict harm and forward content without consent (e.g., Wood et al., 2015). Lastly, evaluation plays a significant role when addressing sexting in order to understand the reality within the corresponding context (e.g., Barrense-Dias et al., 2017;Davis & Schmidt, 2016) and to promote evidence-based practices. Drawing on measurable objectives and considering the definition used is also important. This would enable us to determine the impact and effectiveness of the strategies, so they could act as support mechanisms for professionals working with minors on a daily basis (e.g., Lim et al., 2016;Livingstone & Smith, 2014). This systematic review does present some limitations. Studies addressing this topic may not have been considered for the following reasons: Sexting was identified through another term; sexting was implicitly covered in intervention programs about other phenomena; or the full article could not be accessed. It is also possible that effective actions are still under development, currently at the "to be published" stage or on the lookout to be published. Future research could build on this review by including studies from other databases, and more comparative studies and further analyses into the nature and characteristics of sexting from an educational point of view would prove useful. There is also a need to evaluate the strategies and actions used to address sexting, with the aim to design and implement evidence-based initiatives that equip schools and teaching staff with effective tools to prevent and tackle the potential risks associated with this phenomenon. --- Appendix: General information on the articles included --- Declarations Conflict of interest The authors report no conflicts of interest. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http:// creat iveco mmons. org/ licen ses/ by/4. 0/. Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Impact of individual and neighborhood social capital on the physical and mental health of pregnant women: the Japan Environment and Children’s Study (JECS)

Background: Previous studies revealed positive, negative, and no influence of social capital on the health outcomes of pregnant women. It was considered that such differences were caused by the disparities of outcome measures and sample sizes between studies. Our chief aim was to verify the positive influence of social capital on the health condition of pregnant women using established health outcome measures and large-scale nationwide survey data. Methods: We employed questionnaire survey data from 79,210 respondents to the Japan Environment and Children's Study, and physical and mental component summary scores from the 8-Item Short-Form Health Survey as outcome measures. We estimated the effect of individual and neighborhood social capitals on physical and mental component summary scores. To consider the property that the richness of social capital would be generally determined by individual characteristics, and to estimate the causal influence of social capital on health without bias caused by said property, we adopted average treatment effect estimation with inverse probability weighting. Generally, average treatment effects are based on the difference of average outcomes between treated and untreated groups in an intervention. In this research, we reckoned individuals' different levels of social capital as a kind of non-randomized treatment for respective individuals, and we applied average treatment effect estimation. The analysis regarded pregnant women with the lowest level of social capital as untreated samples and women with other levels of social capitals as treated samples. Results: For mental component summary score, the maximum average treatment effects in the comparison between the lowest and highest levels of social capital were approximately 4.4 and 1.6 for individual and neighborhood social capital, respectively. The average treatment effects for the physical component summary score were negligible for both social capital types.

Background The influence of social capital on health has been widely discussed in existing literature; however, these previous studies have produced conflicting findings regarding whether social capital (in the form of social networking and cohesion) can, through communication and social support, enhance health outcomes [1]. We analyzed the effects of social capital on women's health during pregnancy. In Japan, the social environment surrounding pregnant women has evolved in recent decades, with existing trends toward nuclear families, rural depopulation, and higher urban population densities being considered to have weakened intergenerational exchanges and community ties [2]. Importantly, it is unclear whether such weakened social ties negatively affect health during pregnancy. In particular, if there is a negative association between a lack of access to social capital and healthy pregnancy, this could mean that current societal trends are having a significant negative overall effect in this regard. Conversely, if social capital has a positive impact on health during pregnancy, it could, in conjunction with standard medical interventions, offer a means of alleviating physical and mental difficulties for pregnant women. Previous studies have investigated the effect of social capital on several indicators of health during pregnancy, including self-rated health [3]; 12-Item Short-Form Health Survey (SF-12) scores [4]; symptoms of depression and anxiety [4][5][6][7][8][9]; pregnancy complications [4,10,11]; oralhealth-related quality of life (OHRQoL) [12]; preterm birth [4,8,11,[13][14][15][16][17][18][19][20][21][22]; and low birth weight [4,13,20,21]. Of these investigations, those of self-rated health, SF-12 scores, symptoms of depression and anxiety, pregnancy complications, and OHRQoL have reported that social capital has a favorable positive influence in this regard. However, the analyses of the influence of social capital on preterm birth and low birth weight have produced inconsistent results, with some studies reporting positive relationships [4,8,11,[20][21][22] and others reporting no effect or a negative effect [13][14][15][16][17][18][19]. In the most relevant study to the present research, the SF-12 was administered to pregnant women in Berlin, and social support was consequently found to have a positive influence on their scores [4] (the SF-12 is a shorter version of the 36-Item Short-Form Health Survey [SF -36], which is widely used to measure functional health and well-being, and is based on self-reports from respondents). However, this previous study was conducted across a limited geographic area and examined fewer than 1000 respondents; thus, analysis of large-scale nationwide data is needed to assess the generalizability of the researchers' findings. Considering this, we sought to clarify the impact of social capital on health during pregnancy using a large nationwide sample. More specifically, our study analyzed data gathered by the Japan Environment and Children's Study (JECS), which is a nationwide birth cohort study sponsored by the Ministry of the Environment of Japan. The primary aim of the JECS is to analyze the effect of environmental risk factors on children's health, and the project is being conducted in 15 regional centers across Japan (Hokkaido, Miyagi, Fukushima, Chiba, Kanagawa, Koshin, Toyama, Aichi, Kyoto, Osaka, Hyogo, Tottori, Kochi, Fukuoka, and south Kyushu/Okinawa). As part of JECS, researchers recruited expectant mothers from these areas between 2011 and 2014, of which approximately 100,000 pregnancies registered. The project will continue to follow these parents and children until the children reach 13 years of age. The design of the JECS has been reported in detail elsewhere [23][24][25]. We used nationwide survey data from the JECS to investigate the impact individual and neighborhood social capital have on the physical and mental component summary (PCS and MCS, respectively) scores of the 8-Item Short-Form Health Survey (SF-8; another short version of the SF-36). This research is expected to make two main contributions: first, the results should clarify whether social capital has a positive impact on health; and second, the results obtained from this large-scale dataset should reveal general attributes of the Japanese population. Previous studies of social capital have discussed both its positive and negative effects. Examples of negative impacts would be the exclusion of outsiders and strong enforcement of local norms [1,26,27]. To determine its true impact, the effect of social capital should be verified based on validated measurement scores and data. If the scale of the positive impact is smaller than that of the negative impact, this may indicate that social capital has an overall negative impact. Conversely, if our investigation finds that the positive impact is large and statistically significant, this could contribute to the promotion of health-care policies that focus on the social capital of pregnant women. --- Methods --- Study design The JECS gathered medical records, questionnaire results, and biological specimens from pregnant women from pregnancy through to child-rearing, with the content of the data collected depending on the stage of gestation, parturition, and childcare. This method of investigation enabled researchers to determine participants' characteristics throughout the period in question. We used the data obtained from the questionnaires and medical records. Pregnant women completed the first questionnaire (M-T1) during their first trimester, and the second questionnaire (M-T2) during their second and third trimesters. These respondents answered the questionnaires and returned them in person at subsequent prenatal visits or by sending them via mail to JECS Regional Centers. Where possible, the centers addressed incomplete questionnaires by performing subsequent face-to-face or telephone interviews with the respondents [24]. The participating women also recruited their partners, and there are approximately half as many registered fathers in the dataset as there are registered mothers. We limited the data used in our analysis to the mothers' responses; this was to avoid the risk of sample selection bias that could be caused by including fathers' responses. M-T1 includes question items concerning family characteristics, disease, tobacco use, substance use, working status, working environment, and various other topics. Moreover, M-T2 contains question items pertaining to health status, dietary habits, tobacco use, sleep quality, home appliances, substance use, working status, education history, household income, and social capital. Finally, medical records following delivery (Dr-0 m) contain details regarding the newborn baby, obstetric and delivery complications, and other topics. From M-T1, we used the information regarding family characteristics, self-reported history of disease, and labor-force participation; moreover, from M-T2 we used the PCS and MCS scores, age, experience of stressful events, education history, household income, and level of social capital (stressful events included experiencing, over the course of the previous year, the death and/or illness of a loved one, the loss of the respondent's and/or spouse's job, the acquiring of a significant mortgage, divorce, moving home, and marital problems). The presence of obstetric complications was identified using information from M-T2 and Dr-0 m. In Dr-0 m, physicians reported the timing and diagnosis of obstetric complications; if the diagnosis of an obstetric complication was recorded prior to the respondent completing M-T2, we regarded the respondent as having experienced a pregnancy with an obstetric complication. --- Outcome measures In our statistical analysis, we considered the PCS and MCS scores as outcome variables. Specifically, the SF-8 PCS and MCS scores were calculated based on the respondents' answers to the question items in M-T2, which includes items assessing general health, physical functioning, role-physical, bodily pain, vitality, social functioning, mental health, and role-emotional. The PCS and MCS scores measure physical and mental functioning, respectively, with higher scores indicating better health status; the validity of the Japanese translation of these question items has been verified in previous research [28]. --- Exposure The main exposures are the variables measuring pregnant women's social capital. As previous studies conceptualized, we regarded the resources embodied by the individual's social network as individual social capital; and the resources formed by social cohesion, such as the stocks of trust or reciprocal relationships within the community, as neighborhood social capital [3,12,29]. The M-T2 questionnaire contained question items pertaining to individual communication and evaluation of trust in and support received from neighbors. Supplementary Table 1 (Additional File 1) shows the question items related to social capital. The contents of the questions concerning individual social capital (questions A to D) are similar to those of the six questions from the Social Support Questionnaire (SSQ) [30]. In response to these questions, the respondents provide information regarding how often and strongly they depend on others. The variables we extracted from the questions represented social capital in terms of social networking at the individual level. Moreover, the questions on neighborhood social capital (questions E and F) are similar to the "social cohesion and trust" components of a questionnaire used in the Project on Human Development in Chicago Neighborhoods (PHDCN) [31]. Questions E and F require respondents to evaluate their degree of trust in and the support they receive from their neighbors. The answers respondents provide to these questions imply group attributes, measured in terms of individual understanding. The variables we extracted from these questions were considered to reflect social cohesion --- Participants Research groups can access the JECS data through the JECS Program Office's regional centers. We used the "jecs-ag-20160424" dataset, which includes questionnaire responses from mothers and fathers and medical records from physicians from the time of registration to 1 month after parturition. Before beginning the statistical analysis, we excluded some portions of the dataset, in accordance with our research criteria. More specifically, the total number of pregnancies registered in the dataset was 103, 099. Women registered with multiple pregnancies within the survey period were included but, for each woman, we limited the data to that for the first pregnancy, which reduced the dataset to 97,454. Data from respondents who withdrew consent were eliminated; this resulted in a further reduction to 97,425 participants. Finally, we targeted data from only participating women who answered all question items related to the variables used in our analysis. Thus, we ultimately analyzed a dataset of responses obtained from 79,210 respondents. The study flow chart is shown in Fig. 1. --- Statistical analysis To estimate the causal influence of social capital on health, we adopted average treatment effect (ATE) estimation with an inverse probability weighting (IPW) estimator. In the analysis, it is required to consider the property that the richness of social capital would be endogenously determined by individual characteristics in general, and to measure the causal influence without bias caused by said property. Generally, ATE is based on the difference of average outcomes between treated and untreated groups in an intervention. In this research, we reckoned individuals' different levels of social capital as a kind of non-randomized treatment for respective individuals, and we applied the method of the ATE estimation. The IPW estimator is useful to control the bias caused by non-randomized treatment. In cases where the treatment is not randomized, a simple comparison of outcome averages between treated and untreated groups highlights both the effects of the treatment and the differences in characteristics between them. For the correction of the sample selection bias caused by the characteristic differences, the IPW estimator is valuable in ATE estimation. We regarded pregnant women with the lowest level of social capital as untreated samples and the women with other levels of social capitals as treated samples in the ATE estimation with the IPW estimator. When the level of social capital is determined by individual characteristics, the characteristics would differ between treated and untreated samples. Our analysis used the IPW estimator to avoid the bias caused by the characteristic differences. In IPW, the reciprocal of the probabilities of the assignment to the treated and untreated groups for respective samples are estimated and employed as the weighting variables in the calculation of averages within the groups. The variables control the effect of the nonrandomized assignment on the averages. The IPW estimator requires a regression equation for assigning samples between the treated and untreated groups. As a dependent variable, the equation has a dichotomous variable that is equal to "1" for treated samples and "0" for untreated samples. The individual characteristics considered to affect the sample assignment are used as the independent variables. The results of this estimation provide for each individual predicted probabilities regarding their level of belonging to the treated and untreated groups, respectively; this predicted probability is generally called a "propensity score." The inverse probability, namely, the reciprocal of the propensity score, is used in the IPW estimator. Thus, we respectively calculated the weighted averages for the The mathematical specification of the IPW estimator is as follows. For individual i, z i is a dichotomous variable that reflects his/her assignment to the treated and untreated groups, respectively. If a sample is assigned to the treated group, z i = 1; if the sample is assigned to the untreated group, z i = 0. x i represents the vector of the covariates for the assignment. The predicted probability that the sample is assigned to the treated group is described as e i = p(z i = 1| x i ), and the range of the probability is 0 to 1. This probability is individual i's propensity score. The predicted probability that the sample is assigned to the untreated group is 1 -e i . These predicted probabilities are generally obtained from the results of logistic regression analysis. When y i is an outcome of individual i, the weighted average of the outcome variable among the treated samples using the inverse probability is Êðy 1 Þ ¼ P N 1 i¼1 z i y i e i = P N 1 i¼1 z i e i . Moreover, the weighted average among the untreated samples is Êðy 0 Þ ¼ P N 0 i¼1 ð1 -z i Þy i 1 -e i = P N 0 i¼1 ð1 -z i Þ 1 -e i . The ATE is calculated by Êðy 1 Þ -Êðy 0 Þ [32-37]. In the survey from which our data are sourced, the question items pertaining to social capital present three or more response choices, allowing for different levels of social capital. Based on their answers to these questions, the samples are divided into groups representing various levels of social capital. Each answer is transformed into a categorical variable. We calculated the predicted probability through multinomial logistic regression, with the categorical variable set as a dependent variable. The group with the lowest level of social capital was regarded as the untreated group; the other groups were regarded as the treated groups. The analysis considered the ATE between the groups with the lowest and some different medium levels of social capital, as well as the ATE between the groups with the lowest and highest levels of social capital. The following example illustrates the method we used to calculate the ATE, based on a question item for which an individual selects an answer from three options. Specifically, one of the items on the questionnaire regarding social capital is: "The number of friends or neighbors to whom you can talk casually about your concerns" (Supplementary Table 1, Additional File 1). The associated response options are: "none," "one or two," and "three or more." This question item creates three groups with different levels of social capital. In our analysis process, first, the multinomial logistic regression analysis is performed, which provides the probabilities that the respective options are selected by an individual. When the predicted probabilities are described as e i0 (for "none"), e i1 (for "one or two"), and e i2 (for "three or more"), respectively, for individual i, e i0 + e i1 + e i2 = 1. We calculate the weighted averages of the outcome variable for the respective groups using the reciprocal of the predicted probabilities. The weighted average of the outcome among untreated samples who select "none" is: Êðy 0 Þ ¼ P N 0 i¼1 y i e i0 = P N 0 i¼1 1 e i0 . Similarly, the weighted averages among treated samples who select "one or two" and "three or more" are expressed as: To calculate ATE based on the IPW estimator, two assumptions must be satisfied, otherwise this ATE evaluation cannot be justified [38]. One assumption is that each sample has a positive possibility of receiving each treatment level. When there is at least some overlap between the estimated density of the propensity scores that treated samples are assigned to an untreated group and the estimated density of the propensity scores that untreated samples are assigned to an untreated group, the overlap assumption is not violated. If the estimated density for the treated samples has most of its mass near 0, while for the untreated samples the estimated density is near 1, these densities do not have an overlapping region, and the overlap assumption is violated [38,39]. Êðy 1 Þ ¼ P N 1 The second assumption is that the means of the covariates corrected by the IPW estimator are balanced between treated and untreated samples. When the means of the covariates of the treated samples are close to those of the untreated samples, the assumption can be considered as not being violated [38,40]. Before obtaining the ATEs, the validity of these assumptions must be checked. --- Results The summary statistics of the variables we used are shown in Table 1. These summary statistics indicate the individual characteristics of the participating pregnant women. The mean PCS and MCS scores were 45.64 and 49.13, respectively. Most participants were married (including common-law marriage). Approximately half did not have children prior to the current pregnancy. Of the pregnant women in this sample, over 80% had been diagnosed with at least one type of disease, approximately 20% had experienced at least one obstetric complication, and over 40% reported experiencing at least one stressful event in the past year. The summary statistics also revealed the sample profiles of individual and neighborhood social capital. For questions A to F, responding "none of the time," "none," or "disagree" indicated the lowest level of social capital. First, regarding individual social capital (questions A to D), for questions A to C 10-15% of the pregnant women responded "none of the time" or "a little of the time," thereby indicating that they had low levels of individual social capital. Moreover, the responses to question D indicated that approximately 40% of the respondents did not have three or more friends or neighbors with whom they could casually discuss their concerns. Regarding neighborhood social capital, responding "disagree" or "somewhat disagree" to questions E and F indicated low levels of neighborhood social capital; overall, approximately 45% of respondents answered "disagree" or "somewhat disagree" to these questions. A two-sample t-test that compared the respective mean health statuses of the two groups showed that both PCS and MCS scores were related to age, marital status, disease, obstetric complications, stressful events, labor-force participation, mothers' and fathers' academic histories, and household income (Table 2). For individual and neighborhood social capital, the difference in the two-sample mean was generally greater for the MCS score than for the PCS score. In addition, the group with a higher level of social capital had better physical and mental health statuses, with a few exceptions. The two-sample t-test of social capital revealed a correlation between social capital and certain individual characteristics (Table 3). More specifically, high individual social capital (measured in questions A to D) was found to be related to being married, having no previous children, experiencing no stressful events, having a higher education level, and having a higher household income (Table 3). Moreover, high neighborhood social capital (questions E and F) was found to be associated with older age, being married, having children, having no current disease, having no obstetric complications, experiencing no stressful events, not participating in the labor force, having a higher education level, and having a higher household income (Table 3). The ATEs for the PCS and MCS scores showed the degree that social capital affected physical and mental health. The weighted averages and ATEs were obtained through IPW estimation. The ATEs were obtained via subtracting the weighted average of the group with the lowest level of social capital from that of the group with other levels of social capital. The ATEs indicate how social capital influences the summary scores of the treated groups compared to the untreated group. If the ATE is positive and the magnitude is large, it can be concluded that social capital largely improves the summary score. Before assessing the ATE values, we needed to verify the validities of the assumptions. We first found that the estimated densities of the propensity scores for the treated and untreated groups overlapped in the respective question items; this finding indicated that the overlap assumption was not violated. Second, we calculated the standardized differences, shown in Supplementary Tables 2-1 (Additional file 2), 2-2 (Additional file 3), and 2-3 (Additional file 4), as performed in previous research [38,40]. These tables indicate the standardized difference between the means of the treated and untreated groups before and after correction by the IPW estimator. If the standardized difference calculated from the data weighted by the inverse probability is close to zero when compared with that from the raw data, the correction made to balance the treated and untreated groups can be regarded as appropriate. These tables show that the differences from the weighted data are approximately zero. Overall, the differences from the weighted data are smaller than those from the raw data; thus, we can conclude that the assumption of the balance between the treated and untreated groups was satisfied. The ATEs for the PCS scores indicated a significant negative impact of social capital in question A, and a positive impact of social capital in question D (Table 4). Moreover, a positive impact of social capital on the PCS score was observed for neighborhood social capital (Table 4). For example, the ATEs for question E were 0.50 and 0.90 for "somewhat agree vs. disagree" and "agree vs. disagree," respectively (a value of 0.90 indicates that the PCS score for respondents who most strongly feel mutual trust is 0.90 higher than that of respondents who feel no mutual trust). These tables show that the absolute values of the impacts of individual and neighborhood social capital on the PCS scores were between 0 and 1. These results indicate that social capital has a negligible effect on physical health during pregnancy. The ATEs of the MCS scores are reported in Tables 5. Except for "a little of the time vs. none of the time" for questions A and B, the statistically significant ATEs within pairs of different levels of individual social capital were all positive (Table 5). Further, all ATEs relating to neighborhood social capital were positive and statistically significant (Table 5). These ATEs show that higher levels of social capital have a larger positive impact on mental health. We can identify a proportional relationship between the level of social capital and the scale of the ATE. In questions A, B, E, and F, the largest differences in the MCS score associated with the highest levels of social capital were approximately 1.0-1.6. Moreover, for questions C and D, the largest differences caused by social capital were approximately 3.6 and 4.4, respectively. The maximum effects of individual and neighborhood social capital were approximately 4.4 (question D) and 1.6 (question E), respectively. The results for the PCS and MCS scores imply that both individual and neighborhood social capital have some degree of positive impact on mental health, with this being particularly true for neighborhood social capital. --- Discussion Our research contributes to existing literature by identifying the positive impact social capital has on the mental health of pregnant women. Furthermore, by using nationwide survey data collected across Japan, the generalizability of our findings relating to social capital and health during pregnancy is high; in comparison, a previous work that used scores obtained from the SF-12 [4] examined fewer than 1000 participants. Our results indicate that, for pregnant women, a lack of social ties is associated with worse health; this was especially notable in regard to mental health during pregnancy. This finding, showing that the mental health of pregnant women is improved by social capital, can have It is also important to explain the relevance of this study in terms of comparing its design with that of previous related research. Studies that have measured the effect of social capital on health can be categorized into four groups in terms of the data type examined: (1) individual social capital and health outcomes, (2) individual social capital and group-level health outcomes, (3) group-level social capital and individual health outcomes, and (4) group-level social capital and health outcomes [1]. Our study can be categorized into designs 1 and 3. PCS and MCS scores, individual-level social capital, and group-level social capital were measured through the participants' responses. The question items relating to social capital required participants to provide information regarding their communication network at the individual level and to evaluate their degree of trust in and support received from their neighbors. This evaluation indicates their neighbors' group attributes and is regarded as a collective factor. The variables of individual and neighborhood social capital indicate the degree of individual network resources available to participants and the participants' social cohesion, respectively. This study differs from previous studies that have analyzed the influence of social capital using JECS data [9,10]. One such study, which used the Kessler 6-Item Psychological Distress Scale (K6) as an outcome measure, did not consider the neighborhood social capital data obtained through questions E and F [9]. Another study considered gestational diabetes mellitus as an outcome; while this research used the question items we applied in our analysis, the researchers also examined responses to question items concerning the degree of regional public safety, mutual trust, and mutual assistance through principal component analysis [10]. The JECS question items for mutual trust and assistance are: "Would you say that most people can be trusted?" and "Would you say that most of the time people try to be helpful, or that they are mostly thinking of themselves?" This measure of generalized trust is debatable, because the question items do not specify a reference area for the respondent [41]. Further, questions that ask about generalized trust may cause respondents to report certain perceptions that are unrelated to their life within their communities [41]. Therefore, such question items are gradually being removed in favor of items that refer to familiar or personal trust [41]. The question items in the JECS survey regarding regional public safety and mutual assistance also present similar problems, as they do not clearly specify a reference area. Our study regarded both individual networking and social cohesion as social capital to be investigated, and our analysis purposely did not include question items concerning regional public safety and generalized feelings. A limitation to our analysis is that we did not obtain detailed information related to social capital, such as friends' and neighbors' characteristics. Network analysis of social capital, using the "position generator" and "resource generator" measurement instruments, could identify the effectiveness of individual network members [42]. However, identification of substantial functions among network members is difficult in analysis of nationwide survey data sourced from a large number of question items. --- Conclusions We used JECS data to analyze the impact of social capital on the health of pregnant women in Japan. We calculated ATEs of social capital on the PCS and MCS scores of the SF-8 using the IPW estimator. We consequently found that social capital has a degree of positive influence on MCS score. This result implies that --- Availability of data and materials The data used to derive our conclusions are unsuitable for public deposition owing to ethical restrictions and the specific legal framework in Japan. Specifically, it is prohibited by the Act on the Protection of Personal Information (Act No. 57 of 30 May 2003, amended 9 September 2015) to publicly deposit data containing personal information. The Ethical Guidelines for Epidemiological Research enforced by the Japan Ministry of Education, Culture, Sports, Science and Technology and the Ministry of Health, Labour and Welfare also restrict the open sharing of epidemiologic data. All inquiries regarding access to the data should be sent to [email protected]. The person responsible for handling inquiries sent to this e-mail address is Dr. Shoji F. Nakayama, JECS Program Office, National Institute for Environmental Studies. --- Supplementary information Supplementary information accompanies this paper at https://doi.org/10. 1186/s12884-020-03131-3. Additional file 1: Supplementary Table 1. Items that assess social capital. Additional file 2: Supplementary Table 2-1. Balance check using standardized differences for individual social capital. Authors' contributions HI designed the study. RM and KM analyzed and interpreted the data. RM wrote the manuscript. The JECS group collected the data and obtained the funding. KM, KH, ATs, ATa, HI, and the JECS group contributed critical revisions to the manuscript, and read and approved the final draft of the manuscript. --- Additional file 3: Supplementary --- Ethics approval and consent to participate The JECS comprehensive protocol was approved by the Review Board on Epidemiological Studies of the Ministry of the Environment of Japan (100910001) and by the ethics committees of all participating institutions. This specific study was also approved by the Ethics Committee of the University of Toyama (R2015094). JECS is conducted in accordance with the Helsinki Declaration and other national regulations, and written informed consent was provided by all participants. --- Consent for publication Not applicable. --- Competing interests The authors declare that they have no competing interests. --- Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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The Potential Role of Housing Unit Diversity in Gated Communities in Social Cohesion

Perhaps the new gated communities are good examples of urban design in their own right, and the questions that the paper raises are how the diversity of housing unit space affects social cohesion and how we can design communities to increase social cohesion among its occupants in the future. The diversity of land uses facilitates better social cohesion s and bonds, as good street coordination and open spaces calming traffic contribute to creating a suitable built environment for residents to generate a sense of place. Gated residential compound models seek to create residential units that provide a safe, luxurious and private life for its residents. They achieved it simply by gated themselves. Studies have confirmed that the main reason that prompted investors to build gated communities is their desire to achieve quick wealth and that the diversity in the area of the residential unit in it contributed well to the speed of marketing the residential units built in it, so this research paper seeks to show the effect of the diversity of the area of the residential unit on the efficiency Residential use in gated communities. The research concluded that the gated community has achieved a state of balance in residential use through the diversity of housing units.

INTRODUCTION ecently, the phenomenon of walled communities has increased and developed in many countries of the world in general and Iraq in particular, which expresses new characteristics of the urban product. Despite the multiplicity of urban patterns of walled communities from one country to another, and even from one city to another within the same country, they are similar in a number of characteristics, and investors have recently moved towards building walled communities in Iraqi cities, especially the city of Kut, which was discussed in the research. There are studies that indicated the importance of gated communities in achieving a number of dimensions of urban sustainability by ensuring privacy, security and a luxurious social life. Perhaps the new gated communities are good examples of the success of urban design in itself and its role in achieving social cohesion for residents. The idea or belief that social cohesion at the neighborhood level can be created or enhanced through urban planning and design is certainly not new. For example, the concept of "neighborhood unity" coined by Clarence Perry [1] was based on the assumption that the localization of facilities and services can help create neighborhoods that are characterized by greater face-to-face interaction between neighbors and a stronger sense of community than was prevalent in the modern urban environment. The same idea also influenced the work of neourban planners such as Clarence Stein and Michael Corbett , however, it is the writings and works of neo-urbanists that generated the current enthusiasm and wide interest in this very idea [2] . In order to create socially diverse neighborhoods, the new urbanists advocate careful integration of different dwelling sizes and different types of tenure [3]. Neighborhood design principles established to promote social cohesion among residents deal mainly with issues such as the integration of land uses, the location of services, the layout of streets, the design of streets and other public spaces, the width of residential lots, and the relationship between house and sidewalk [4]. Based on these design principles, new urbanists have developed typical zoning codes, which have been adopted by many municipalities around the world for their zoning ordinances. These design principles have also been incorporated into the urban and architectural codes that have guided the planning and regulation of construction in a rapidly growing number of new urban development 's[5]. The research dealt with the walled residential community that was built by an investment company in the university residential neighborhood in Al-Kut as a case study, so the research problem is raised through several questions that lie in showing the extent of the impact of urban design on social cohesion and how can we design communities to increase social cohesion in the future, and whether Social cohesion can be enhanced through the personal characteristics of residents, and that the aim of the research is to demonstrate the impact of the diversity of residential use on the efficiency of the walled community, and that the hypothesis of the research lies in that the diversity of residential use is necessary to achieve social connections and contributes to achieving the requirements of balance in the urban design of walled communities. The research relied on the descriptive and quantitative analytical method to reach the results. --- GATED COMMUNITIES Gated Communities are societies that are characterized by calm and serenity and include the elite and the class. High-end social, which has prestigious lifestyles, and these methods are achieved through a set of traits Common elements of natural environment coordination, security, safety, distinctive architectural character and services [6] . It is also defined as those cities that are surrounded by walls and have several entrances that are controlled and controlled by security guards, or through electronic control points. These settlements are equipped with their needs of services such as large shopping centers, large commercial centers, recreational facilities, open areas and parks, in addition to artificial lakes and swimming pools [7] . There are some reasons that led to the emergence of this type of society, which are those related to the reality of the existing urbanization, represented in many urban problems, such as the general deterioration of urban spaces due to high densities, traffic congestion of roads, pollution, as well as the low performance and efficiency of services, represented by the decrease in the per capita share of green and open spaces. All of the above is considered as centrifugal forces that pushed some residents to leave their communities to escape to those communities in search of a better lifestyle [8]. --- Features of planning and managing gated communities Gated communities affect urban planning and management issues, but there are concerns about the monitoring and management of these gated communities, and there are questions about the powers of each of the residents, associations and private security agencies individually or with a joint responsibility with the residents of those communities as bodies responsible for managing such types of societies as these communities create a kind of large social division that in turn reflects a pattern of urban separation urban separation, which requires double services and facilities to serve residents within those communities and others to serve other classes outside them, and this also raises many concerns about the traditional role of government and the potential impact on urban management in the future [9]. --- The concept of urban management The residential community is a dynamic life system that has many components that vary according to time and place, but its components cannot be separated, otherwise a defect occurs, and it should improve the management of this system to achieve the needs of citizens, which is called urban management[10]. This system includes the public and urban services sectors in addition to the housing sector, and enters the process of providing services under the crucible of urban management in the residential community, including the elements of planning, implementation and management and the set of relations between the parties involved in it (the city apparatus, the urban plan, the state, the private sector, the population), as the time has passed when the state was carrying out all the burdens of development in planning, -up[11] The overlap of the parties involved in urban management without coordination or a general framework governing relations between them leads to a disjointed and uncoordinated result and does not achieve real sustainable development, as the management of urbanization has many elements for its success, such as participation, transparency and justice. All these elements must be integrated, and good management also requires adequate resources such as material funding and labor [12] . With good urban management, residential communities flourish and social and economic conditions in communities improve, and good urban management aims at the following[13]: Activate the participation of actors, stakeholders and residents in management and decisionmaking (decentralization of management). Accept the role of the government as an observer and regulator of the process, while acknowledging the participation of the population and all parties in decision-making. --- Urban Design and Social Cohesion Social cohesion is a concept that is difficult to define in its most general sense. It refers to a type of glue that binds a community together. Social cohesion in a neighborhood is often linked to building a neighborhood's sense of community. The literature most relevant to the study of the potential impact of urban design on social cohesion among the various components of society can be divided into two main directions. These two trends can be clearly identified in the international literature. The first approach focused on the relationship between urban design and social cohesion at the neighborhood level, or a sense of community [14].[This focus on the neighborhood has been based, in large part, on the assumption that tight-knit neighborhoods are viable units for implementing social and economic development programs and that, with the associated strong sense of community among their residents, they are important to the general well-being for the individual and the benefit of the family and society as a whole [15]. Within this first orientation, two distinct groups of literature can be identified. First, there is the literature associated with and defense of the principles of the New Urbanism movement. is the latest urban design movement that proposes specific design principles to create socially diverse neighborhoods with a strong sense of community among residents [16]. The second trend includes literature that has focused on the impact of design on the livability of urban public spaces outside the neighborhood scale. Following the early work of researchers such as Whyte and Appleyard [17] , this literature has investigated the impact of design characteristics on the increased presence of people in public spaces such as plazas, squares, streets, and parks. This approach is relevant to the study of social cohesion between different residents. Our research will focus on the first approach. --- Case Study: The Gated Residential Community Project In The Univesity Neighborhood The residential investment university neighborhood project is one of the projects of the National Investment Commission in Wasit Governorate, Al-Kut District, according to the investment license 42/ S / 2018. The project is located in the city of Kut, on the right side of the Tigris River, in District 45 Um Halana. The use of the land according to the basic residential design (horizontal) With an area of 29.25 Hectare, about (292,500) square meters. The project includes 542 housing units and service facilities divided according to the sectorial design No. 887, Kut Municipality and its amendments. The lands in the project were re-divided for the purpose of reducing the number of lands with a large area into parts with smaller areas, and after dividing the lands allocated for building residential units, the total number became 776 housing units, note that the available areas before dividing the areas are 500 square meters, 240 square meters, and 200 square meters after the division, models have been added 170 square meters, 120 square As in --- ANALYSIS 3.1 The method of implementing the project The method of implementing the project is through the investing company, it is sold directly to the citizen through a sale and purchase contract between him and the company According to the investment law, the ownership of the residential land is transferred in the name of the company, provided that the reservation sign is placed in favor of the Kut Municipality Directorate until the completion of the construction of the housing unit and the transfer of its ownership to the beneficiary (to ensure that there is no speculation on the lands. And after collecting the amount of the housing unit according to the concluded contract, its ownership will be transferred to the beneficiary under a formal transfer transaction in the competent Real Estate Registration Directorate. The Central Bank's initiative for the years 2020 and 2021 to grant real estate loans to citizens (an interest-free loan for a period of 20 years) and to support investment projects contributed to the growth and success of the project, in order to increase the citizen's demand for a decent housing house. --- Land uses in the gated residential community The gated community was initially designed according to the activities and uses shown in Table No. ( 1), and with regard to residential use in the gated community, the housing units were divided according to the areas and numbers indicated against each of them, as indicated in Table No. (2). The investment license for the project was issued for the divided housing units, which numbered 542 housing units, in addition to the housing units belonging to the municipality, according to the percentage referred to above in the investment law, which numbered (39) units. Thus, the total number of housing units within the area designated for residential use is 581 housing units. Changes in land use in the gated residential community. A number of modifications took place in the land uses of the gated residential community, as shown in Table No. (3), and there was also a change in the residential use of the gated community, where the area of a number of housing units was divided as shown in --- Table( 1):- --- RESULTS --- Diversity Indices Diversity index is a quantitative measure to measure the number of different species present in a data set of population [18]. These indicators are statistical representations of the diversity of land uses in the gated residential community as well as the diversity in the area of housing units in different aspects (richness, parity, and control). A comparison was made to measure the diversity index of land uses in general and residential use in the form of the design stage and the implementation stage in which land uses and the area of housing units were modified within the residential use [19]. --- Shannon-Weiner Index A widely used indicator that takes into account species richness and evenness is the Shannon Wiener Diversity Index, originally proposed by Claude Shannon in 1948. It is also known as the Shannon Diversity Index [20]. 𝐻 = -∑ 𝑃𝑖 * 𝐿𝑛 * 𝑃𝑖 ∞ 𝑛=1 (1) where Pi = proportion of individuals of types i, and Ln is the natural logarithm, and S = Types richness. The value of H ranges from (0) to H (max), whereas H (max) is different for each community and depends on species richness. Diversity analysis was conducted for the residential units of the gated community before and after changing the area of the housing units, as shown in Tables 5 and6. Through the results of the above indicator, the urban design of the gated residential community after changing the area of the housing units within the residential use in it is more diversified, and the modified housing units' design is richer in type than the previous design. --- CONCLUSIONS The research proved that there is a better understanding of the potential role of the diversity of housing units in gated communities in contributing to social cohesion among the various components of society in the city of Al-Kut through the case of good diversity that appeared in the residential use in the closed residential community, which reinforced the presentation of relevant literature. Through the current knowledge reached by the research, it became possible to clarify the directions of the future urban design required, where the literature was discussed and the results of the research indicated that it is possible to manipulate the design characteristics of the neighborhood environment to enhance the neighborhood cohesion or the neighborhood's sense of belonging to the community, despite the social homogeneity Culture among residents is an important precondition for neighborhood cohesion. The idea of trying to create diverse, culturally and socially cohesive neighborhoods through design and/or politics does not appear to be the appropriate or most appropriate way to achieve cohesion between the various components of the greater community, and to promote social cohesion of the greater community. In a community, the size of homogenous areas should be small enough to allow people to identify with others. According to this approach, there are two needs: The first: the need to determine the appropriate size for homogenous communities or residential neighborhoods, Second, the need to identify the types and nature of urban public spaces that may play the role of neutral settings that can attract people of different social groups and where communication and interaction between them can occur.

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“Doing Time” and “Creating Space”: A Case Study of Outdoor Play and Institutionalized Leisure in an Urban Family

The New Urbanism trend has led to more Swedish middle-class families living in apartments in cities, with proximity to attractive schools and services but poor opportunities for outdoor play. Viewing families' and children's agency and living conditions as intimately connected with time-space variations, we investigate how children and parents in one urban family "do time" and "create space" in the domains of outdoor play and institutionalized leisure. Using a mixed-method approach, we find that within one family there are several ways of handling this. Initially a way of promoting physical health, the daughter's soccer activity has become the hub of the family's time-space organization and an important part of social life and identity for both the daughter and the parents. The son, refusing institutionalized activities, is considered a physically active outdoor child even though he spends more time indoors. When outside, he recreates child-unfriendly places in the neighborhood into spaces for play. We argue that using a mixedmethod approach gives insight into variations within families. The results of this case study show that parents and children have to adjust to certain conditions and constraints in the domains of outdoor play, institutionalized leisure and family life, but that they also possess and can exercise agency regarding time and space within these domains.

Introduction Families' daily lives are structured to a great extent by their social and economic resources. Geographical location of the home, work places and schools, as well as neighborhood structure and children's leisure activities are other important conditions. Exploring the ways children and parents perceive, experience and negotiate the organization of time and space in everyday life is the aim of this study. Specifically, in this article we examine how the children and parents in a middle-class, inner-city family negotiate the organization of time and space within the family. Within this case study we address this question with examples of how children and parents "do time" and "create space" in the domains of children's outdoor play and institutionalized leisure. Research on families' organization of daily life has often focused on the organization of time. In Sweden, Forsberg (2009) investigated parenthood and everyday organization in child-centered middle-class families, focusing on negotiations over the balance of work, leisure and family commitments between parents and children. Forsberg mostly focused on negotiations between parents (e.g., over who takes the children to day care and who goes to work early), but because in contemporary Sweden children are often expected to make their voices heard in family matters, he also addressed negotiations between parents and children (e.g., about when to do homework). Jurzcyk and Lange (2007) have also addressed the balance between work and leisure, stressing time but also space, and discussing the effects that flexible work hours and parents bringing work home have on children's well-being. U.S. sociologist Annette Lareau has done important work in the field of families' temporal organization by adding class to the analysis of the organization of daily life. In her famous book Unequal Childhoods (2011), Lareau compared how families with children from different social backgrounds in the United States organize their daily life and move between different social and geographical contexts. In addition to noting class differences in organized leisure activity participation, Lareau showed that the daily lives of middle-class families had a much faster pace than those of working-class families. Members of well-off families talked in terms of "deadlines" and the amount of "wiggle room" they had. Lareau (2011) also discussed differences between lower-and middle-class families in the balance between children's time for informal play and for institutionalized leisure activities. Working-class children could engage in informal play at their own pace and as they pleased. They exercised more agency over their playtime and were less tired and less stressed about tight schedules than middle-class children. In addition, their outdoor informal play led to children of different ages playing together. For middle-class children, time for informal play or hanging out in the neighborhood was more restricted (see also Karsten 2010;van der Burgt 2010). In her study, Lareau found that middle-class children sometimes had difficulty coping with unstructured time, feeling they had nothing to do. Time outside school was devoted to the development of different skills in sports and music useful in adult life, including what Lareau (2011, 39) called "white-collar work skills, including how to set priorities, manage an itinerary, shake hands with strangers, and work on a team." Institutionalized leisure activities are seen as desirable by middle-class parents and as an important part of their children's general education, a logic of childrearing Lareau (2011, 238) termed "concerted cultivation." Middle-class parents are thus willing to spend their leisure time on different institutionalized leisure activities for each child, engaging in "cultures of busyness" (Karsten 2005). Tillberg (2002) and Lareau (2011) have shown that children's leisure activities take up a lot of their parents' time, both in chauffeuring to practice and weekday competitions and in attending competitions on weekends. Tillberg argued that the amount of time and engagement parents put into their children's leisure activities and clubs results in these becoming a considerable part of the parents' identities and identity construction. In addition, Lareau stressed the great deal of time that children's leisure activities often take up for younger siblings, almost taking "hostage" of their time. The children in Lareau's middle-class families also did not spend much time with their parents and siblings because every family member had his or her own time-space schedule. Even while at home, middle-class family members seldom spent time in the same room. The location of the neighborhood in which a family lives also affects the ways members are able to organize their everyday lives in time and space. An inner-city neighborhood with cultural and commercial services near at hand often offers poor opportunities for children's outdoor play. Compact city policies are being adopted in Sweden and elsewhere in Europe that increase the percentage of apartments in the housing stock throughout the city. The increasing density leads in many neighborhoods to a decrease in green spaces and an increase in traffic (Björklid and Nordström 2007). Limited access to good outdoor play areas and prohibitions against unsupervised play in the streets affects crucial aspects of children's mental and physical health (Kyttä 2004;Hillman, Adams and Whitelegg 1991). Despite this, the New Urbanism trend has led to more families with children living in innercity apartments, a tendency seen in Sweden as well as cities such as Amsterdam, London and Paris (Boterman, Karsten and Musterd 2010;Brun and Fagnani 1994;Butler and Robinson 2003). According to Karsten (2007), urban parents have several reasons for remaining in inner-city locations. They may want to retain the urban lifestyle for themselves as well as for their children, to keep close to local social networks or to avoid time-consuming commutes from the suburbs. Another reason may be proximity to what they perceive as good schools (Butler and Robson 2003;Holme 2002;Boterman, Karsten and Musterd 2010). To allow their children to attend a good school, parents move to a home within that school's district or in a location that makes commuting an option. In Sweden, free school choice has led to local school markets and an increased commuting among urban children (Gustafson, Pérez Prieto and Löfdahl 2011;Bunar 2010;Kallstenius 2011). Information on which neighborhoods and schools are well regarded is usually gathered (and even constructed) through parents' social networks (Holme 2002). Research focusing on children's perspectives and experiences shows that not only parents but also children's social networks play an important role (Gustafson 2011;van der Burgt 2008;Reay 2007). Due to their age and dependent status, children are particularly restricted in their mobility, what they can do and where they can do it. Without assistance of a parent, children usually have a small activity zone within which they can move by themselves (Hägerstrand 1970). The densification of urban space, together with more emphasis on institutionalized leisure, is decreasing the time children spend unsupervised outdoors, both in Sweden (van der Burgt 2010) and in other European contexts (Karsten 2005;Valentine and McKendrick 1997). The ferrying of children from home to school to leisure activities results in what Zeiher (2003, 67) calls the "insularization of children's individual life spaces." "Doing Time" and "Creating Space" In daily life, the ways individuals are able to organize their lives in time and space are bounded by different kinds of interacting constraints (Hägerstrand 1970), such as the needs to eat and sleep (capacity constraints), the need to come together and link in time and space for specific activities, and the need to follow rules and regulations in certain domains (authority constraints). In a family, the different members' paths adjust to the family's common timetable and spaces, forming what Hägerstrand calls family "bundles." This implies interacting schedules and a conceptualization of the family as a relational system (Jurzcyk and Lange 2007; Karsten 2007). In addition, the time-space organization of families has to be understood in the context of the transition from the Fordist system, with its rigid external time structures, to a more flexible system, a process that "blurs boundaries" (Jurczyk and Lange 2007, 217) between different spheres. In early modernity the times and spaces of work and leisure were separated by clear boundaries, but such boundaries have in late modernity become more subtle and less clearly defined. A society with fewer fixed external time structures assigns more responsibility for time management to the individual (Jurczyk and Lange 2007). However, this blurring of boundaries does not mean that clear temporal and spatial boundaries have ceased to exist. In fact, Tillberg (2002) argues that the conviction that children should be engaged in institutionalized leisure activities has become such an important norm in today's society that such activities have become the dominating authority constraint in family daily life. An effect of the increasingly institutionalized daily life of children (Hengst 2007) amid the time bind of family routines is that children have little control over their free time and space. Children have been hidden inside family statistics, especially in research investigating society and families (Qvortrup 1997). In our research, however, we view childhood as socially situated and children as social agents (James and James 2004). Accordingly, agency is an important concept in our research and we stress both children's and parents' agency when it comes to the organization and negotiation of time and space within the family. Children's and parents' agency in regard to the organization and negotiation of time is emphasized by the concept of "doing time" (Jurczyk and Lange 2007). Jurczyk and Lange argue that an active "doing" of time-such as creating "family time," "quality time" or "own time"-is becoming more important for both children and parents. These authors also point to the relational aspect of agency in that children and parents demonstrate different capacities to "do time" depending on their social and economic resources. In the present article we aim to contribute to this discussion by emphasizing the importance not only of family members "doing time" but also of "making and creating space." Time and space are intimately connected dimensions (Massey 2005;Hägerstrand 1970) and omnipresent in that every action is taken in a certain place at a certain time. We argue that while researchers such as Jurczyk and Lange (2007) and Lareau (2011) do discuss space to some extent (the blurring/ articulation of spatial boundaries), they pay insufficient attention to the ramifications of space for agency. People do not only act passively in regard to spatial restrictions, they are also involved in the production of space; that is, the making and creating of space (Massey 2005). Parents' and children's agency and living conditions are not only intimately connected with time-space variations (Holloway and Valentine 2000), but their agency may also differ in different domains. According to Jurczyk and Lange (2007), for example, children often exercise relatively strong agency in commercial domains (e.g., toys, computer games, clothes), but it is much more difficult for them to influence their parents' work hours. --- Methodology The present article is based on a pilot study conducted to ascertain which aspects of families' time-space organization of daily life could be investigated with different research methods. While planning research on the time-space organization of families in neighborhoods with different class and geographical characteristics, we decided to do a pilot study of one family in particular-two parents, a son and a daughter-in a well-off, inner-city neighborhood in Uppsala, Sweden. This yielded not only valuable methodological insights but also valuable data on the time-space structures that frame this family's everyday life. In addition, the study suggested important concepts concerning parents' and children's agency in negotiating the family members' shared and individual time and space. The study had a qualitative mixed-method character, with a broad thematic approach to different family members' perspectives on time and space in daily life. We asked the parents and children to fill out time-space diaries across a seven-day week. We conducted separate interviews with the children and parents to encourage them to express their unique perspectives on and experiences of organizing and negotiating their time, spaces and activities. After the interviews, we took walks through the neighborhood with both the children and parents during which they showed us the places they frequented. Speaking with the parents and children separately yielded differing insights into how the family's decisions were negotiated (although we did not study the negotiation process itself). --- The Setting The centrally located upper/middle-class district of Kungsängen in Uppsala is a new residential neighborhood consisting of five-and six-story buildings with some sections still under construction. Apartments constitute 95 percent of the residences. The studied family lives on the fourth floor in one such building, in a five-room apartment with a large balcony facing a courtyard. Before moving to Kungsängen the family lived in a detached house in a fairly new development in the countryside, approximately a half-hour drive from Uppsala. The neighborhood consists of predominantly well-off Swedish inhabitants (only 14 percent of residents have a foreign background). A sushi bar and a posh clothing boutique reflect the neighborhood's economic level (Figure 1). Proximity to a wellstocked grocery, the Uppsala city center, the highway to Stockholm and public transportation including the train station provide easy access to commercial and cultural services and make Kungsängen a good location for commuters. There is a high rate of car ownership (52 percent), and the parking areas were built underground (Uppsala Municipality Statistics 2010)-an advantage for outdoor play since it reduces traffic dangers near the apartment buildings. A bus to schools in nearby areas serves the neighborhood. Children constitute 17 percent of the inhabitants and as a demographic group are slowly increasing (Uppsala Municipality Statistics 2010). However, Kungsängen was clearly not planned with children in mind. There is a lack of child services such as day-care centers, schools, and leisure activity sites. While there are a few playgrounds for small children, larger green spaces, playing fields, activity sites and playgrounds for older children and teenagers are lacking. Accordingly, the neighborhood does not meet the criteria for a child-friendly environment (Kyttä 2004). Indoors, the family's apartment has a large kitchen with a dining table and a spacious living room with a television and a Wii gaming console. The children have their own bedrooms, the parents share another and a spare room is used as an office with a computer. The shared laundry is located on the first floor. In the following section, we discuss the ways that the children-Anne, age 12 and Tom, age 9-and their parents, Hilda and Oskar, each 37-organize time and space in the domains of children's outdoor play and institutionalized leisure. We also relate this time-space organization to structural conditions such as neighborhood location and characteristics as well as social class. In addition, we provide examples of how the children and parents "do time" and "create space" for outdoor play and institutionalized leisure, which generally involves the balancing of different kinds of activities. --- Outdoor Play The opportunities and limitations for outdoor play are shaped by the family's apartment lifestyle and Kungsängen's structure and inner-city location. As noted above, playgrounds, larger green spaces, ball courts and activity sites for older children and teenagers are lacking. What spaces are available are small greens in the courtyards, a central plaza (Figure 2) with a circular green and paved area surrounded by the apartment buildings, and the streets that circle around the buildings. --- Figure 2. The Plaza In adjacent neighborhoods there are large green spaces and playgrounds for older children, but a river and major roadways surrounding Kungsängen effectively limit its children's access to these facilities. For outdoor play, then, the neighborhood is neither inviting nor very interesting for older children. The parents view this as the downside of the neighborhood. In addition, outdoor play is more complicated when living in an apartment on the fourth floor rather than the first or in a single-family house. The children and the parents spend less time outdoors now than they did when living in their country house with a garden. Discussing their choice of geographical location, we learned that the move to an apartment had not been their first choice. They had preferred a nearby area with detached houses, but due to Uppsala's limited stock of such housing a single-family home there was too expensive for the family. --- Choosing School over Outdoor Play and Mobility While the parents were not explicit as to why they decided to leave country living for an inner-city location, it is clear they actively searched for housing in the part of the city to which they eventually moved. They had two main reasons. One was proximity to the workplace; both Hilda and Oskar now travel short distances to work (Karsten 2007). The more important reason, however, was the proximity of what the parents considered to be two "good" schools, one in a neighborhood that could be reached on foot and another just a little further away. Even if the possibilities for children's outdoor play were taken into consideration by the parents, this factor was not given priority when choosing where to live. Instead, the parents placed greater value on access to a school with a reputation as a welldefined, workable environment (as reflected in effective procedures and sufficient order). In line with other research (Holme 2002), the parents' school preference was based on what they had heard from friends and colleagues at work. Specifically, the mother's best friend is a teacher at the school the children now attend, so it seems likely that her view of the school influenced the parents' choice. The children exercised little agency in the decision. Tom had preferred the nearer school because he would be able to walk each day, while now he has to take the school bus. This offers insight into the ways family social networks and the information that circulates within them affects children's time-space conditions and practices and, consequently, their well-being and competence. While gaining access to the "best" education and the experience of riding the school bus, Tom loses the experience and physical activity of walking to school. Thus, in line with other research (Karsten 2007; Jurzcyk and Lange 2007), we stress the importance of conceptualizing the family as a social network. --- Creating Space and Doing Time for Physical Activity Although Tom misses out on the physical activity of walking to school, his parents value the children's physical activity a great deal. Yet, the outdoor environment of inner-city Kungsängen struck their daughter Anne at first as dull and she preferred indoor activities. She does not have any friends in the neighborhood and there is not much for her to do there. Worried about Anne being physically inactive and gaining weight, her parents convinced her to join a soccer club. She now practices soccer on Tuesdays and Thursdays and then plays in weekend matches-a significant increase in physical activity. The soccer club practices in another neighborhood, so her father now drives her there and back twice a week. In this way, together they create both time and space in order to organize Anne's physical activity. The family's middle-class status (which means they have access to a family car and flexible work hours) allows it to conform to the time-space conditions required by this institutionalized activity (Lareau 2011;Karsten 2005;Tillberg 2002). Unlike Anne, Tom has no interest in getting involved in any institutionalized sports activity. According to his parents, this is not a problem with regard to his need for physical activity and fresh air. Oskar and Hilda view Tom as a typical and physically very active outdoor child, involved in informal play outside all the time with friends. This is also the way Tom describes himself and his leisure in the neighborhood. Although uninterested in organized soccer, he is keen on playing soccer with his friends in the small green spaces of the several courtyards. While outside, Tom is indeed very active, moving about all the time. He is also outside much more than Anne according to the data of their time-space diaries. Tom played outside in the neighborhood 280 minutes and Anne 60 minutes during the study's seven days. However, the time Tom actually engaged in outdoor play was quite limited compared to his other leisure activities. His passion for soccer showed itself more in the amount of time he spent watching matches on TV and playing soccer video games on the Wii console. In fact, Tom spent three times as much time with the TV and computers-860 minutes-than he did playing outside. Thus, even if he plays outside more than Anne and is physically very active while doing so, according to his diary he is more an indoor child than an outdoor child. The fact that Anne's soccer activity generally takes place outside serves to increase her time outdoors. So while Anne is viewed as an indoor child by her parents, the amount of time she spends outdoors is actually higher than her brother's: Anne is outside 17 percent of her time awake and not at school, compared to only 12 percent for Tom. In fact, it is the parents who spend the least time outdoors: only 6 percent for Oskar and 8 percent for Hilda of their time awake and not at work-biking, walking or standing and watching Anne's soccer matches. Apartment living seems to be negatively affecting the parents' physical activity levels more than the children's. --- Creating Play Space in a Place Not for Play When playing outdoors Tom exhibits an intense and creative use of space. Together with his friends-mostly boys of different ages but also Anne and sometimes a friend of hers-they play soccer and other games in the small green and open areas between the buildings. While playing soccer in a small space promotes the development of techniques for maneuvering the ball, Tom and his friends yearn for a large green space in the neighborhood where they could play "proper" soccer. In Kungsängen the lack of a large ball court means they have to be careful not to break any windows. They also have to avoid kicking the ball into a fenced-off construction site just behind the small green where a neighbor (a sports instructor) has erected a mini soccer goal (see Figure 3). This does not mean, however, that the children always stay within this small green space and obey safety rules. Tom showed us a hole in the fence where they sometimes enter the construction site to play. Also, in one of the courtyards there is a single swing and here both Anne and Tom express wishes for another so they could swing together or with someone else, compete for the fastest and highest swinger, etc. --- Figure 3. The mini goal As Christensen, James and Jenks (2000) show, children construct a sense of home and family by moving "in-and-out-and-around" the home. However, when living in a fourth-floor apartment, going in and out is not as easy as in a single-family house, and when Tom and Anne are outside their parents want them to stay there a while and not be going in and out all the time. Tom has found a way in his outdoor play to connect the inside of his home with the outdoors while remaining outside the apartment. When soccer games end and he wants to do something else outside, he must first return the ball to the apartment-and so puts it in the elevator to transport it up, while using the building's intercom to tell his parents upstairs that the ball is on its way for them to collect (Figure 4). This way he does not have to spend time climbing stairs or on the elevator to return the ball and then going back down and outside to continue play. In a way the elevator becomes part of Tom's play space; his creative use of it and the intercom, with his parents' help, gains him time to play. Thus he takes control over his own time and space and transforms places not meant for play into play spaces. --- Figure 4. Soccer ball in the elevator Another creative and effective way in which Tom recreates "places not for play" into "play spaces" is through the use of private courtyards in the neighborhood. As noted above, the lack of variety in play spaces (Kyttä 2004) leads Tom and his friends to bend some of the rules. Each apartment building has a courtyard intended for the residents of that building. The courtyards are accessible only by keying in a door code (Figure 5). In order to use shortcuts into the different courtyards and be able to play in more than just their own, Tom and his friends have discovered and memorized the door codes for each building. Thus, they create additional space for play. --- Figure 5. Coded-lock entrance to a building with a courtyard Institutionalized Leisure Anne's soccer activity consumes a lot of her leisure time both during the week and on weekends (17 percent of her time awake and not at school). Anne herself does not see this as a problem. On the contrary, she really enjoys the time spent and enjoys the sport so much that she plans to enroll in a secondary school with a soccer program. It is her hobby, she says, together with hanging out with her friends. A big part of why Anne enjoys organized soccer is that the soccer club is a place for meeting and socializing. Her teammates are also her friends and classmates and it is when she plays soccer that she meets them outside school. Thus, to Anne, playing at the soccer club is about doing and creating social time and space rather than time and a space for physical activity. The importance of the social dimension of institutionalized leisure is often ignored in the debate on children's leisure. It is also her parents' perception that Anne likes to go to the soccer club. Although at first they had to persuade her to start soccer for health reasons, they are happy to now see that her own driving force inspires her playing. Both parents are interested in Anne's soccer and like to go to her matches to cheer on the sidelines. Oskar describes himself as a leisure-club person who has always been engaged in some kind of team sport. He believes that playing a team sport is all about team spirit and being there for your team, so Anne's attendance at practice and matches is therefore very important to him. He is willing to help her attend practice by ferrying her to and from the soccer club twice a week. Hilda thinks that Anne's soccer is very time-consuming and wonders if Anne would rather skip practice or a match now and then, then concludes that this is probably her own perception rather than her daughter's. Anne herself does not speak of being stressed by or tired of her soccer activity, unlike children in Lareau's study (2011). Having one leisure activity and not several seems to allow Anne enough time and space for recuperation (Tillberg 2002). The ways she creates such time and space, between school, homework, meals and soccer, is by watching TV and chatting with friends on the Internet at home. --- Resisting Institutionalization Although Hilda and Oskar are confident that Tom does not need an institutionalized leisure activity to be physically active and get fresh air, they would still like him to engage in such an activity. They have tried to get him involved in a variety of sports and are currently trying to persuade him to start playing organized soccer. This can be understood as socialization into middle-class practices and in this respect the family is typically middle-class (Lareau 2011;Karsten 2005;Tillberg 2002). So far, Tom has refused to take part in any organized leisure activities or after-school clubs. Resisting institutionalization outside school, he manages to retain quite a bit of autonomous time and space. Not attending an after-school club allows him, for example, to be the first in the family to arrive home in the afternoon, make his own snack and eat it while watching TV or playing a computer game. This he greatly values, in line with Jurzcyk and Lange's (2007) discussion of the importance for children in mid-childhood of a degree of autonomy in determining, doing and creating their times and places as well as having time alone. --- Soccer as an Important Family Time-Space Constraint Looking at the family's time-space organization from a time-geographical perspective, it becomes clear that the members' paths on the weekend are bounded by Anne's soccer activity, which consumes a good deal of the family's common time as well as her parents' and her little brother's leisure while gathering the family at institutionalized leisure spaces. Anne's leisure activity is also an important authority constraint upon the family (Hägerstrand 1970;Tillberg 2002). Oskar drives her to practice twice during the work week and does not stay to watch but instead makes the 20-minute drive back and forth each time. Soccer practice also affects the way the family eats their meals. Oskar says that he often eats by himself, before, after or in-between his ferry runs. In order to have enough energy for practice, Anne has a large snack beforehand then eats dinner afterwards, either by herself or together with her father. On the weekends there are usually soccer matches somewhere in the area that both parents and often Tom attend. Although Tom did not talk about this himself, his parents say that he does not always like to come along to the matches. Due to their length (they often take the whole day) he cannot stay home alone and it is not always possible to stay at a friend's house for the whole day. Sometimes Hilda stays home for Tom's sake. Oskar, however, does not, attending Anne's matches whenever possible. This indicates that her soccer activity is primarily Oskar's parental responsibility. --- "Soccer Parents" Anne's soccer activity has grown to be an important part of her parents' social life as well. Hilda and Oskar like to go and watch the matches on weekends and to cheer Anne's team on from the sidelines. They do not often miss a match. Especially for Oskar this is an important part of parental identity. While Hilda was not very interested in watching soccer at the start, she is now very engaged in attending Anne's matches, both for the fun of seeing the team win and for socializing with other engaged parents. For both Hilda and Oskar the weekend matches have become social events as they have grown acquainted with a small group of parents who are as committed to their children's activity as themselves. Thus, Anne's soccer activity and the social network it has generated have become important parts of her parents' social life and a way of "doing parental time" and identity. However for Tom, who would rather stay home and play with his friends, Anne's soccer is a disadvantage. He misses out on social activities while those of his sister and his parents increase. Adjusting Work Hours for Children's Activities Tillberg (2002) has shown that parents adjust their work hours to children's leisure activities. Hilda and Oskar describe their family as one with "common" routines and members who like to be at home and in each other's company. They portray themselves as family-oriented parents and say they have adjusted their work hours and personal interests to family life. The way these parents "do family time" is to spend a lot of time at home during after-school hours. Hilda has adjusted her work hours and leisure time to family life. She works part-time in order to see to the children eating breakfast, packing bags and getting off to school, then arrives home again around four p.m. Oskar works full-time. Having flexible hours, however, he chooses to start work early in the morning, before everyone else in the family gets up, and comes home around 4:20 in the afternoon. He is then often the one who takes Anne to soccer practice, but this is not the explicit reason for the way he organizes his work hours. His main reason for starting and leaving work early is his preference for spending more time with other family members at home. He likes to start work early to be able to get home early, and then, being home, does not mind driving Anne back and forth to soccer practice. Oskar's time-space diary shows that he spends 71 percent of his time awake and not at work at home. Thus, while at first glance it appears that the parents' choices were based on logistical demands of family life, when we look more closely at the ways these parents organize their everyday time and spaces, we see that their choices were actually mostly made to obtain a home-oriented lifestyle and more time for the family to be together. According to Hilda, moving into town from the country has also contributed to more "family time" as well as more time with extended family and friends. Still, since Oskar often sits at the computer while home, sometimes for work and sometimes for pleasure, the spatial and temporal boundaries between work and family are not entirely clear. --- Conclusions Compact city policies and New Urbanism have in Sweden and other European countries resulted in the planning of urban neighborhoods without sufficient regard for the well-being of children and youth. In this article we have discussed results from a case study of how a middle-class family in a child-unfriendly inner-city neighborhood organizes time and space for outdoor play and institutionalized leisure. The ways children and parents within a family context "do" and "create" time and space for outdoor play and institutionalized leisure have not received enough attention in the literature. Our results show that parents and children have to adjust to certain conditions and time-spatial constraints in the domains of outdoor play, institutionalized leisure and family life, but that they also possess and can exercise agency regarding time and space within these domains. The neighborhood in which the study family lives does not meet the criteria for a child-friendly environment in terms of outdoor play space. While the parents value outdoor play as physical activity for their children, this factor did not steer their choice of neighborhood. Their middle-class status allows them to reach beyond the neighborhood for physical activity and institutionalized leisure. As a result, their daughter Anne's soccer activity has become an important authority constraint for family life in time and space. It has also become central to the identities and social life of her parents and the ways they "do parental time," while Anne herself enjoys the social dimension of organized soccer most of all. For her the soccer club is a social time and space. For her younger brother Tom, however, spending weekend days at his sister's soccer matches reduces social time with his own friends, reflecting the effect of institutionalized leisure on siblings' weekly paths. While Anne does not engage with the (for her) dull neighborhood, Tom recreates outdoor places into play spaces in a creative and physically intense manner. However, he also spends a lot of time indoors. The parents' construction of Tom as a physically very active outdoor child should be understood in relation to their daughter's limited independent play, her organized soccer activity and their own indoor and physically inactive everyday lives. In addition, although the parents are noticeably affected by the discourse of "concerted cultivation" (Lareau 2011) regarding institutionalized leisure (but not informal play) as an important part of children's general education, they justify Tom's disengagement by leaning on the discourse of physical health. So far Tom has been able to resist socialization into the middle-class practice of institutionalized leisure by being physically very active and creative while outdoors. By also refusing institutionalization in after-school clubs he simultaneously creates autonomous time for himself indoors. It is noteworthy that this family's interest in their daughter's leisure activity has not led them to engage in a "culture of busyness" (Karsten 2005). Although Anne's soccer activity is the hub of the family's time-space organization, they manage to maintain a home-oriented lifestyle at a rather relaxed pace and with plenty of time for recuperation and socializing with family and friends. They do not talk in terms of "deadlines" and "wiggle room" in the way Lareau's (2011) families did. This reflects the importance of understanding middle-class practices not as uniform but rather as --- diverse, depending on family and cultural contexts. On the other hand, if and when Tom's parents persuade him to join the soccer club, this family's "family time" at home will increasingly be converted into "family time" at the soccer club. Danielle van der Burgt, Ph.D. in Social and Economic Geography, is a postdoctoral researcher at the Department of Social and Economic Geography, Uppsala University, Sweden. Her main research interest is within the fields of social and urban geography, with a specific focus on children, youth and families and their relation to the built environment. She is particularly interested in children's and youths' everyday mobility and well-being in public space. Other interests are emotional geographies of fear and risk, experiences of place, gender, parenting, segregation, and physical planning, as well as families' organization in time and space. In her research she uses mainly qualitative methods such as in-depth interviews and maps but also quantitative methods such as surveys and time-space diaries. Her current research projects focus on urban families' time-space organization of daily life and on the social construction of fear of urban violence in families with teenage children. She is coordinator of Children, Young People and the Built Environment, a Swedish national network for researchers and professionals. --- Katarina Gustafson, Ph.D. in Education, is a senior lecturer in Child and Youth Studies, Department of Education, Uppsala University, Sweden. Her research field is children's everyday lives and identity within families, schools and neighborhoods. She takes a childhood geographical approach, focusing on the importance of place in children's daily identity work. Along with children's agency and living conditions she is also interested in segregation, urban childhoods, special education, school markets, school transportation, families' organizations in time and space, and children's mobility and identity work. In her research, together with traditional ethnographical research methods, she also works with children's own documentations such as narratives, photos, maps, etc. She is part of the research group Studies in Childhood, Learning and Identities as Interactional Practices (CLIP).

481edd1257ad3973a309fc4bf0ede2a4f0430fc6

Public awareness and social acceptability of dental therapists

dental therapists in this paper) to work in all sectors of dentistry 11 and the number of training places for dental therapists has increased signifi cantly. Recently the General Dental Council (GDC) has defi ned the permitted duties of all members of the dental team. As well as describing the core treatments and procedures each professional group may conduct under the prescription of a dentist, a wide range of additional treatments that appropriately trained dental care professionals (DCPs) may perform was identifi ed. 12 Such skills potentially extend the list of permitted duties for each type of DCP. Sequential UK studies indicate increasing acceptance by dentists of the use of skill-mix, [13][14][15] although there is still ignorance of dental team members' roles. 14,15 However, the views of patients and public are missing from any consideration of potential changes in service provision. US data suggest patient satisfaction with care provided by DCPs, [16][17][18][19] however these cannot necessarily be generalised to the UK. Indeed, the acceptability of care provided by DCPs has been identifi ed as a priority for research. 20 Furthermore, little is known of the public awareness of dental therapists

INTRODUCTION The use of skill-mix in dentistry, where different dental team members employ different skills, is now well established in the UK and elsewhere. 1 Although the extent to which it is used varies internationally, the rationale for using skill-mix focuses on the potential for increasing access and efficiency of services. [2][3][4][5][6][7] In the UK it has been estimated that 70% of all visits and 60% of all clinical time in primary care could be provided by dental therapists. 8 This model of care has been given increasing prominence over the last two decades in the UK following positive published reports. 9,10 Subsequent legislative changes permitted dual-trained dental hygienists and therapists (referred to as Objectives To investigate public awareness and the social acceptability of dental treatment provided by dental therapists in the UK. Method A telephone survey of a representative quota sample of 1,000 UK adults. Results 10.4% of participants were aware of dental therapists as a professional group, of whom none correctly identifi ed their permitted duties. 61.3% were willing to receive simple restorative treatment from a therapist, with acceptability predicted by being male [OR 1.44 (95% CI 1.09-1.90)], being younger [OR 1.024 (1.016-1.032)] and having a perceived need for treatment [OR 1.49 (1.09-2.5)]. Fewer were willing to allow a therapist to restore a child's tooth (54.7%, p <0.001, McNemar's test) with acceptability predicted by being younger [OR 1.026 (1.018-1.034)]. Those receiving some private treatment were less likely to report acceptability of simple restorative treatment for themselves [OR 0.61 (0.46-0.81)] or for children [OR 0.54 (0.41-0.72)]. 48.2% of participants expected to pay less for treatment provided by therapists, with acceptability of equal costs predicted by the participant being male [OR 1.81 (1. 50-2.40)]. Conclusion These fi ndings identify a need for education and reassurance of the public on the training and permitted duties of dental therapists and the rationale for skill-mix in dentistry. and their roles. This is particularly important now given recent recommendations to increase the use of skill-mix. 21 The term 'acceptability' is often used synonymously with 'satisfaction' . However, the acceptability of a service or professional group should be conceptualised more broadly. People can only express satisfaction with a service or professional when they have experienced care. However, the views of people who have not experienced care become crucial if the use of a professional group is to be expanded. For example, healthcare quality assurance requires a service's social acceptability and legitimacy be considered as a key part of service quality assessment. 22,23 Similarly, the psychology literature refers to the importance of assessing the social validity of healthcare interventions where the social acceptability of the goals, procedures and outcomes of treatment is assessed. [24][25][26] Conceptually this can be applied to services or professional groups such as DCPs. In both, the views of those who have and have not experienced care should be sought. A preliminary study of the social acceptability of skill-mix in South Yorkshire reported low levels of awareness of dental RESEARCH therapists as a professional group and of their permitted duties. Although the acceptability of some procedures was relatively high, more invasive procedures and those provided for children were regarded as less acceptable. 27 In addition, qualitative data suggested a possible association between dental anxiety and lower levels of acceptability of skill-mix. 28 However, nothing is known of the prevalence of these views at a national level. Therefore the aim of this study was to investigate public awareness and social acceptability of the use of dental therapists in the UK. --- METHOD A telephone survey was undertaken by a market research company (GfkNOP) using structured interviews on a representative quota sample (n = 1,000) of UK adults (18 years and over). Precision estimates were undertaken to calculate the desired sample size. These were based on data from the earlier study 27 which identifi ed that 15% of participants were aware of dental therapists as a professional group. A sample of 1,000 was selected to provide a 95% confi dence interval that a population proportion of 15% would provide estimates ± 2.2%. This level of precision was regarded as suffi cient for the study. The content of the questionnaire was informed by a review of the literature, anecdotal reports and data from qualitative interviews. 27,28 Areas of inquiry included the following explanatory variables: participants' age, sex, socio-economic 29 and educational status; dental attendance patterns and access to care; perceived treatment need; and levels of dental anxiety (assessed by the Modifi ed Dental Anxiety Scale). 30 The outcome variables included awareness and knowledge of dental therapists and their permitted duties, acceptability of treatment provided by therapists for adults and children, and expectations of cost of treatment. Only closed questions were used. The questionnaire was piloted with 20 volunteers in face-to-face interviews and the market research company undertook further telephone piloting before commencement. Minimal modifi cations were requested. Potential participants were then telephoned out of normal working hours (5.30pm-9.00pm) by random dialling in postcodes to obtain a quota sample that was representative of the Offi ce for National Statistics mid-2005 population estimates for the UK. 31 The sample was weighted to ensure appropriate proportional representation of England, Scotland, Wales and Northern Ireland. To achieve a quota sample of 1,000 UK adults, 6,937 unique telephone numbers were called. Of the numbers called, 1,704 were called back as they were either busy or engaged (n = 466) or the participant requested the interview take place at a different time (n = 1,238). Only 91 calls resulted in no contact being made (due to wrong numbers, no answer after a number of call attempts, or the number being out of service). Of those contacted, 5,828 declined to participate and a further 18 stopped the interview. The subject matter, purpose and likely duration of the survey were explained. Potential participants were informed that they could decline involvement in the survey at any stage during or after the interview. Having been asked the questions --- RESEARCH therapists were able to extract deciduous teeth and 69.2% that they could administer local anaesthetic (Table 1). No participant correctly predicted all the permitted duties of dental therapists. Having received information on the role of therapists and their training, 61.3% of participants would be happy to receive simple restorative treatment but 20.4% would not be happy to receive any treatment from them (Table 2). Overall, participants regarded dental therapists providing care for children as less acceptable (Table 3). Fewer participants regarded dental therapists providing fi llings ( for children as acceptable than they did for themselves. More than half of participants found dental therapists extracting deciduous teeth to be unacceptable (Table 3). Thirty-nine percent of participants expected to pay the same for treatment provided by dental therapists but 48.2% would expect to pay less. Signifi cant predictors of the acceptability of care provided by dental therapists and its cost are reported in Table 4. Male participants, younger participants and those with perceived treatment need were more likely to fi nd having their tooth restored by a therapist acceptable. Younger participants were more likely to report a therapist restoring a child's tooth acceptable. Those receiving some private treatment were more likely to fi nd treatment provided by dental therapists unacceptable for themselves and for children. Men were more likely to accept paying the same (rather than less) for care provided by a therapist. Although levels of acceptability varied in different socioeconomic groups, chi-square test for trends did not identify a clear association. --- DISCUSSION The aim of this study was to investigate public awareness and social acceptability of the use of dental therapists in the UK. It found low levels of awareness of therapists as a professional group and of their permitted duties. Although more than half of participants accepted the prospect of being treated by therapists, signifi cantly fewer were willing for them to treat children. The low level of awareness of dental therapists reported here is similar to the fi ndings of the South Yorkshire study. 27,28 Before 2002, therapists were employed primarily in the salaried dental services. Consequently, despite the recent step change in the number of training places, it is unlikely that participants would have encountered them and this may explain the limited awareness. Indeed, no participant correctly identifi ed all of their permitted duties. The fi ndings of this and the South Yorkshire study suggest that participants were confusing dental therapists with dental hygienists. Our earlier qualitative study also suggested that procedures perceived as more invasive were regarded as less acceptable when performed by DCPs, where more emphasis was placed on the importance of qualifi cations, familiarity and trust in the clinician performing the task. 28 The proportions of participants in this study willing to accept local anaesthesia and simple restorative treatment were consistent with the South Yorkshire data 27 (61.3% v 57.0% and 68.5% v 64.0%, respectively). However, the proportion of participants not willing to have any treatment provided by a therapist differed (20.4% v 7.0% respectively). Younger participants were happier to receive treatment from dental therapists and for them to treat a child. The odds ratios (Table 4) indicate that approximately 2.6% more people found treatment provided by dental therapists for adults or children unacceptable for every year of life. Although high levels of satisfaction have been reported with skill-mix in general healthcare, [32][33][34][35][36] some older patients have expressed a preference for seeing the doctor in particular circumstances. 34 Lower acceptance of skill-mix in older age groups must be a consideration when delegating care. The earlier qualitative study had suggested that lower levels of acceptability of skill-mix might be observed in the more dentally anxious. 28 As previous studies have identifi ed that those who do not access dental services are often dentally anxious, [37][38][39] such an association would limit the use of skill-mix in increasing access to care. No association between dental anxiety and acceptability was found in this dataset. Logistic regression identifi ed that perceived need for treatment predicted acceptability of receiving dental therapy treatment about demographic data and the duties of a dental therapist, all participants were provided basic information about therapists indicating that they were professionally trained to undertake certain tasks once a dentist had examined the patient and prescribed particular treatments. All interviews took less than ten minutes to complete. The analytical strategy aimed to identify putative associations between explanatory variables and the fi ve outcome variables. Data were analysed in two phases. Initially descriptive and appropriate bivariate analyses (chi-square and McNemar tests) were undertaken to describe and compare key descriptor variables. The second phase identifi ed explanatory variables that predicted the main outcome variables. As the key difference between dental hygienists' and dental therapists' competencies is the provision of simple restorative care, willingness to have simple fi llings performed by a therapist was used as an outcome measure of the acceptability of care provided by them. Bivariate analyses (chi-square tests) of the possible predictors of the acceptability of providing this treatment were used to pre-select variables for forward stepwise logistic regression models. All variables with a relationship of p <0.2 were entered into the models. All analyses were performed using SPSS version 15 and alpha level was set to 0.05. Ethical approval for the study was granted by the University of Sheffi eld, UK. --- RESULTS Of the 1,000 participants, 486 (48.6%) were male. Their mean age was 47.0 years and 28.7% had a child under 16 years of age. Seventy-one percent attended regularly for check-ups and 28.3% perceived they had treatment need. Of those reporting diffi culty with access to a dentist (10.1%), 70.4% cited a lack of local availability of a National Health Service (NHS) dentist as the cause. Overall, 10.4% of participants said they were aware of dental therapists as a professional group. Unsurprisingly, participants with relatives or friends who had worked in a dental team were more aware of dental therapists (42% v 13%, p <0.001, McNemar's test). No other variable predicted awareness. Of those that had heard of a therapist (n = 104), only 38 (36.5%) thought that RESEARCH (Table 4). Bivariate analyses had suggested that irregular attendance and perceived need were associated with acceptability, but lack of access to care was not, suggesting some confounding with irregular attendance. Taken together, these fi ndings are encouraging if skill-mix is to be used in areas where access to dental services is poor and perceived needs are high. The survey participants perceived that dental therapists providing treatment for children was less acceptable than for adults. This fi nding is consistent with the preliminary study, 27,28 although levels of acceptability were slightly higher nationally. Almost half of participants would not want dental therapists to provide restorative care, administer local anaesthetic or extract a child's deciduous tooth. Given that dental therapists are often employed to treat children and adolescents in the UK and elsewhere, 40,41 this fi nding is important. Our qualitative data suggest that more negative views about dental therapists treating children were related to assumptions of inexperience and questionable technical competence. However, positive experiences of being treated by therapists could modify views. 28 Those within the dental profession opposed to the use of dental therapists have expressed concerns about DCPs treating children. 42,43 If skill-mix is to be used to increase access to care for children, it is important that these views are considered. Reassurances about dental therapists' training, qualifi cations, regulation by the General Dental Council, competence and supervision requirements need to be carefully communicated, emphasising that the quality of care received should be at least as good as that provided by a dentist. Similarly, care in the communication of the rationale for the use of skill-mix is required. Signifi cantly, both this study and the preliminary study found that younger participants were more likely to fi nd dental therapists treating children as acceptable, which is encouraging if skill-mix is to be used more in the future, especially as older adults are less likely to have children. Interestingly, those who received some private dental treatment were less likely to accept dental therapists. These fi ndings converge with our qualitative data, 28 which suggested a spectrum of views being held on the nature of dental services, ranging from a private service view of dentistry to a public service view. Those with a public service view tended to be more positive about skill-mix, seeing the potential for the effi cient use of resources in an NHS service. Conversely, those with a private service view often took the standpoint of a consumer, preferring to be treated by a dentist if the cost for treatment would be unaltered. Such fi ndings have profound implications for the employment of therapists in the treatment of adults and children if the proportion of care delivered on private contract continues to increase, but also in the NHS where charges relate to the treatment required rather than the dental team member providing care. Such consumerist concerns have been expressed elsewhere in the belief that the use of dental therapists would lead to a two-tier dental service, where treatment by dentists is reserved for those that can afford it. 43 Our earlier qualitative study 28 suggested that dental and medical services are perceived differently -those with a public service view of medical services often held more consumerist views of NHS dentistry owing to the patient charges levied for treatment and some welcomed the introduction of a scale of fees relating to the clinician providing care. This study has identifi ed that more participants would expect to pay less for treatment from therapists than those who would expect to pay the same. A similar fi nding was reported in the South Yorkshire study. Evaluation of health services increasingly emphasises the importance of user views, 22,23,[44][45][46] the most contemporary of which go beyond evaluating patient satisfaction with services experienced. The concepts of social acceptability 22 and social validity 24 require a broader assessment of the social desirability and appropriateness of a service and its outcomes. The fi ndings of this study, consistent with the earlier study, raise questions about the current social acceptability of the use of dental therapists in the UK. They have identifi ed that awareness of dental therapists as a professional group and their permitted duties is low. Therefore, it is doubtful whether many would be able to give informed consent for treatment provided by therapists should perceptions remain unchanged. There is a role for both the Government and the profession to communicate the rationale for using skill-mix in terms of increasing effi ciency and access while maintaining its effectiveness and thus improving the service's quality overall. 23 Our qualitative data suggested that once the rationale for skill-mix is explained, views on the use of dental therapists were modifi ed. 28 Similar arguments could also be used by dentists solely working in the private sector, if effi ciency improvements are refl ected in patient charges to patients. 28 Research into the potential for the use of skill-mix in private care would also be benefi cial. Telephone surveys have been used in national dental surveys 47 and are frequently used in health and social surveys, particularly in North America. [48][49][50] Although every effort was made by the market research company to achieve a representative sample, like all surveys, a risk of sampling bias exists which tends to result in an overrepresentation of the views of white participants of higher income and educational attainment. 51 This telephone survey reported 26.6% of participants as having perceived need for treatment, which is similar to the proportion (25.4%) reporting perceived need in a recent largescale postal survey of adults (n = 10,864), 37 suggesting that the impact of any sampling and response bias was similar in both. This study and the earlier preliminary study have identifi ed a number of areas for future inquiry. Further research is needed into the broader aspects of the quality of services provided by dental therapists in terms of their effi ciency, effectiveness, their impact on equity and accessibility and their acceptability. 22,23 Research into their acceptability should include an investigation into the views of patients, parents/ guardians and children on the experiential acceptability of care provided by dental therapists. The theoretical and methodological diffi culties of such research are well documented 52,53 and mixed-method approaches have been recommended. 54,55 Given the increasing proportion of provision of dental services in the private sector, models of how skill-mix can be best employed in both NHS and private practice should be explored and how the delegation of care is best undertaken and communicated in both should be investigated. --- CONCLUSION This study confi rmed that the awareness of dental therapists and their permitted duties was low across the UK. More than --- half of participants accepted the prospect of treatment provided by dental therapists; signifi cantly fewer were willing for them to treat children. A fi fth of participants would not be willing to receive any treatment from a therapist. Common predictors of acceptability were being younger and if the participant had a perceived need for treatment. More participants expected to pay less for treatment provided by dental therapists than those who expected equal costs. Such factors need to be considered, as skill-mix is to be increasingly used in the delivery of dental services. The authors would like to thank Irene Quoico of GfkNOP and Dr Sarah Baker for her support with the statistical analysis.

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Communicating COVID-19 health information to culturally and linguistically diverse communities: insights from a participatory research collaboration.

Objective: To consider the challenges of communicating COVID-19 directives to culturally and linguistically diverse (CALD) communities in Australia, and present evidence-based solutions to influence policy and practice on promoting relevant health behaviours; to advance participatory research methodologies for health behaviour change.We present a case study of a participatory research collaboration between CALD community leaders and health behaviour change scientists during the COVID-19 crisis. The goal was to better understand the role of community leaders in shaping health behaviours in their communities and how that role might be leveraged for better health outcomes. Methods: This article is the culmination of a series of dialogues between CALD community and advocacy leaders, and health behaviour change scientists in July 2020. The academic authors recruited 12 prominent CALD community leaders, conducted five semi-structured dialogues with small

health promotion interventions requires collaboration with communities. 1,2,3 Thus, collaboration was formed between health behaviour scientists and CALD community leaders, advocates and bicultural workers (hereafter referred to as 'community leaders') to discuss the challenges faced by CALD communities in communicating COVID-19 health messages, and to develop evidence-based strategies to inform and empower CALD communities to adapt their behaviours in line with COVID-19 recommendations. --- Participatory research methods CALD community leaders, advocates and bicultural health workers have a wealth of knowledge and experience working across diverse communities in Australia. Developing research collaborations with those who have lived experience of the issue being studied is now a well-established method in health research, under the banner of 'participatory research'. 3 Using methods of participatory research, this paper has been co-produced by academics and CALD community leaders from end to end: from data collection through to the co-production of an academic manuscript. Purposive and snowball sampling were used to invite CALD community leaders to collaborate. The academic authors initially invited leaders known to them and those contributing to the public conversation about the issue in the media to take part. They then asked the core sample of seven who had agreed to participate to invite other CALD community leaders with relevant experience to take part. Five semi-structured dialogues were held online via Zoom teleconference in July 2020 with various combinations of CALD community leaders (12 in total), focusing on the following three questions: Australia documented its first confirmed case of coronavirus disease 2019 (COVID-19) on 25 January 2020, and nearly 500 cases were being reported daily by late March. The Federal Government promptly adopted a controlled adaptation strategy and, as of July 2020, every state and territory in Australia appeared to have contained the virus, except for Victoria. After Victoria relaxed restrictions in late May, metropolitan Melbourne and the Mitchell Shire located north of Melbourne experienced a second wave of COVID-19 in July 2020 and restrictions were reintroduced. The experiences during the second wave highlighted the need to engage culturally and linguistically diverse (CALD) communities. Widespread outbreaks of COVID-19 in several public housing towers, populated largely by people from CALD backgrounds, suggested that attempts to communicate the recommendations of the Chief Medical Officer may not have reached and/or been understood by all CALD community members. It is often assumed that providing people with information and explaining why people should perform a behaviour will result in compliance. 1 However, behavioural science has demonstrated that achieving desirable behaviours in a target population is accomplished by understanding the needs of the population and the barriers and enablers to behaviour change. Effective services and interventions draw upon evidence-based practices while taking local context into account. However it is not just what goes into the program, but how it is delivered that matters: implementation science offers techniques to embed evidence-informed strategies into frontline delivery. Designing and implementing successful groups, and worked with all participants to develop insights that were applicable to the many different CALD communities represented in the research collaboration. Results: Three key findings emerged: 1) partnerships between CALD leaders, communities and government are critical for effective health communication; 2) shifting behaviour requires moving beyond disseminating information to designing tailored solutions; and 3) the diverse needs and circumstances of people and communities must be at the centre of health communication and behaviour change strategies. --- Lessons learnt: The collaborative process we undertook in this study enabled us to identify key challenges experienced and solutions offered by CALD leaders in communicating health information throughout the COVID-19 pandemic. Partnering with communities that are subject to health messaging can reduce inequalities in healthcare communication by enabling the development of strategies that help align human behaviour with the recommendations of health experts. This -along with sustained partnership and collaboration with CALD communities, understanding the cultural context, and the appropriate tailoring and delivery of communications -will ensure health-related messages are not lost in translation. The lessons provided in this paper are applicable not only to the current pandemic but also to postpandemic social and economic recovery. These challenges demonstrate the complexity of developing and implementing mass public health communication strategies during public health crises. 5,6 Messages need to be tailored when developed, so they are presented in a meaningful, relevant and applicable way to all population groups. This will be most effectively achieved by codesigning solutions with consumer and community involvement. 7 What are the elements of effective messaging for CALD communities? --- Key points Below we outline solutions offered from CALD community leaders, advocates and bicultural health workers that have been synthesised from the participatory process. In order to see what insights applied across the varied experiences of CALD communities, community leaders' responses were recorded for three topics that were the focus of the dialogues: 1) disseminating messages; 2) designing messages; 3) building trust between communities and government. Solutions were synthesised through an iterative mapping exercise using Miro, a collaborative online whiteboard tool (San Francisco, CA: Miro). Community leaders generated a range of recommendations, for example, about how COVID-19 messages could be disseminated more effectively, and these recommendations were sorted by AW in an initial map (Figure 1a, available from: doi.org/10.26180/14122295. v1). The second phase of mapping added explanations community leaders provided about why each of these recommendations would be effective, and drew connections between specific examples and the principles underlying their effectiveness (Figure 1b, available from: doi.org/10.26180/14122295.v1). This mapping process was repeated with community leaders' responses regarding how messages could be designed more effectively (Figure 2, available from: doi. org/10.26180/14122295.v1) and how trust could be built between communities and government (Figure 3, available from: doi.org/10.26180/14122295.v1). To arrive at practical recommendations, authors then prioritised principles of effectiveness according to three criteria: 1) how many specific examples were linked to an explanatory principle (as indicated by arrows in Figure 1b); 2) the generalisability of a principle across CALD communities; 3) consistency with relevant research evidence. Five recommendations for health officials were distilled from this prioritisation process: 1) partner with communities to tailor messages; 2) use trusted messengers; 3) communicate via appropriate channels; 4) avoid blame and stigma and 5) establish structures for meaningful partnership, such as an advisory body. These recommendations are described below. • What has been done by the government to communicate with or engage your communities about COVID-19? • What needs to happen to make sure that messages effectively reach diverse communities, given that the COVID-19 situation is rapidly changing and messages need to be delivered quickly? • How can we use technology to effectively communicate with people from diverse backgrounds? After completion of the audio-recorded dialogues (mean length 60 minutes), transcripts of the dialogues were analysed by AW and HS using inductive, interpretivist qualitative methods to identify key themes. 4 This grounded-theory approach was used to identify key themes which were circulated to all in the research collaboration for further refinement before finalisation. A 'live' online document was created to allow for multiple authors to contribute to the paper in conjunction with email consultations at four points: first, a draft prepared by AW, AK, DG, and HS was shared with all co-authors for further input/comment; next, initial feedback was incorporated into the paper by AW, and a revised draft was circulated for three more rounds of comment and approval. This iterative process allowed for collaboration throughout analysis and interpretation. The following describes the insights gleaned from this process. --- Communicating COVID-19 health messages: challenges faced by CALD communities While CALD community leaders commended the efforts of the federal and state governments to combat COVID-19, they suggested that challenges remain when communicating public health messages about the pandemic. Challenges may occur due to a lack of the following: 1. Translation of information into all of the various languages spoken by community members 2. Testing of translated materials by CALD groups to ensure that messages are understood by people who might also have limited health literacy 3. Tailoring translation and messages to specific communities, thereby contextualising messages 4. Using trusted messengers to deliver information (e.g. community leaders, advocates) --- Overcoming barriers Drawing upon the principles recommended above, the authors considered how the barriers to effective communication identified at the beginning of this article might be overcome. A number of solutions were generated during the dialogues, which were refined during collaborative writing, to arrive at the following possible solutions: 1) Providing CALD community leaders with effective channels for contacting health authorities, to ask questions or request additional messaging support when needed (e.g. how to adjust behaviour during religious ceremonies or community events) 2) Preceding any major announcement by convening a diverse group of CALD representatives that could flag any major logistical and cultural considerations in advance and suggest solutions (e.g. importance of sending female health workers for door-to-door swab testing; culturally appropriate food support for migrant families in lockdown) 3) Deputising and resourcing community leaders and health advocates to take the lead on translation and health communication within their communities 4) Collaboration with ethnic language media to convey important health, safety and community messages 5) Reporting measures of ethnicity to the National Notifiable Diseases Surveillance System 6) Having proactive solution-focused consultations, rather than reactive consultations in response to a crisis, to create opportunities for 'collective --- Recommendations for health officials 1) Beyond translation of health messages: why partnership and tailoring messages to community values are important Translating COVID-19 health information and prevention strategies into different languages is necessary, however information alone does not lead to behaviour change. 1 The process of language translation must also consider the audience's frame of reference, and the context in which the translated material will be used, which can be done by partnering with community leaders to understand the barriers to understanding and adopting the information. 8 For example, working with CALD representatives will ensure that information is translated into the most appropriate dialects and that it addresses common misconceptions (e.g. the cost of testing) and that difficulties in adhering to disseminated health information can be identified. --- 2) Translated messages must be delivered by trusted messengers Translated information should be delivered using trusted messengers, as the effectiveness of any message depends upon how an audience perceives the credibility of its source. 9,10 For many of the CALD communities in Australia, religious practice is important, and faith leaders can have great impact when promoting and modelling desired behaviours. 11 3) Messages need to be delivered using appropriate and accessible channels Recognising that health communicators are competing for the attention of their audience, information should be delivered in ways that are accessible and appropriate to the target community. 12,13 For example, the WeChat platform plays an important role in disseminating COVID-19 information to the Chinese community in Australia, providing up-to-date information in Chinese languages. Similarly, other CALD communities rely on community message boards, ethnic language print, radio and TV media. --- 4) Blame and stigmatisation must be avoided Infectious disease outbreaks create feelings of fear that can exacerbate racist and xenophobic behaviour, as has been documented during the COVID-19 pandemic. 14 Care should be taken to ensure that extra efforts to reach and support communities that are disproportionately affected by COVID-19 are not interpreted as singling out particular groups as more likely to spread disease. Not only could this increase instances of racism, it would be --- Conclusion Bringing together CALD community leaders and health behaviour researchers enabled us to synthesise recommendations that draw on insights from behavioural and implementation science, as well as the lived experience and professional expertise of community members. A participatory, collaborative research approach enabled us to identify barriers to communicating COVID-19 directives to CALD communities in Australia, and to codesign possible solutions to overcome those barriers through an iterative process of dialogue, analysis and synthesis. The research found that sustained partnerships and collaboration with CALD communities, both directly and through respected leaders and organisations, will enable more effective communication strategies. Working in this way provides the opportunity for timely responses to urgent public health needs, such as those experienced during the COVID-19 pandemic. --- Peer review and provenance Externally peer reviewed, not commissioned. --- Competing interests None declared. --- Author contributions AW, BK, DG and HS drafted the article, assisted by LZ, MK, WS, FM, MM, MA, MK, MG, DC, EC and EM who are community leaders, working with culturally and linguistically diverse communities during the COVID-19 pandemic. All authors read and checked different versions of the paper as it was developed, contributing to the interpretation of data, the intellectual content of the paper, and providing final approval.

2816cd93b4fb6b6bd65c693f016eb20b5e90120c

Social representations of violence against women for a group of rural elderly.

Objective: Understand the social representations of violence against rural women, from the perspective of the elderly, considering how the generation and gender influence this aggravation. Methods: Qualitative study, based on the Theory of Social Representations.It was carried out with 12 elderly rural women from a city of Rio Grande do Sul, in July and August of 2013. The data obtained through a projective technique and semi-structured interviews has been analyzed through the reference of the Social Representations and content analysis. Results: On one hand, the elderly represent violence as distant distress, anchored in extreme acts of aggression. On the other hand, they represent it as present in their relationships, showing themselves vulnerable to the domination of men in the context of life and work.It was revealed the invisibility of violence against elderly women in the rural context, where the male figure overlaps with the female.

INTRODUCTION Violence against women permeates the history of humanity from its earliest days. However, three decades ago it started to be seen as an inherent problem of the health sector, and it is currently understood as a public health problem and a violation of women's human rights (1) , affecting them as regards quality of life and health. It is conceptualized by the Convention of Belém do Pará (1994) as "any action or conduct based on gender that causes death, harm or physical, sexual or psychological suffering to women, both in the public and private spheres" (2) . Situating the rural context, situations of violence against rural women assume different facets, which can be visualized through daily social relations, exemplified by the subordination of women to their husbands and/or partners, male domination, and sexual division of unequal work (3) . In addition, a study carried out in cities of Rio Grande do Sul, which aimed at analyzing the conceptions of domestic violence against rural women in the expression of Community Health Agents, pointed out that women living in rural areas are permanently exposed to different forms of violence. In addition to physical violence, psychological, moral and sexual aggressions, as well as the overload of work and deprivation of freedom on the part of the husband and/ or partner, are mentioned (4) . In the case of the elderly women, this population is more vulnerable to experiencing situations such as those mentioned above, due to the low educational level, physical limitations due to diseases and the aging process, besides the subjective aspects of the elderly rural women (5)(6) . Another aspect that contributes to the non-confrontation of violence against women is the absence of collective resources for the social care and protection in the rural settings, together with the geographical distance from the urban centers (7) . Most of the time, rural women do not have access to police stations, health services and social assistance, for example; and they end up not reporting violence situations, which contributes to the invisibility of the problem. In view of the above, discussing the issue of violence against elderly women in the rural context is relevant, since there are difficulties in identifying the occurrence of these events, both by women and other segments of society, especially in the health sector. Giving a voice to this population with generational and cultural particularities can contribute as a guideline for the development of strategies for coping with and preventing violence in rural areas, as well as for the (re) construction of public policies in this area. In this perspective, the theory of Social Representations is inserted as a theoretical and methodological set allowing a better understanding of the object under study, understanding it as a social phenomenon. The Theory of Social Representations is a typical product of present times and of paradigmatic transition, as well as the feminist and other theories that, in their own way, emerge as new conceptual tools to analyze angles of reality highlighted by new looks (8) . In view of the exposed problem, this study was guided by the following research question: What are the social representations of violence against rural women, from the perspective of the elderly in the rural context? In order to answer to this question, this study aimed at understanding the Social Representations of violence against rural women, from the perspective of the elderly, considering generation and gender as an influence in this aggravation. --- METHOD This is an exploratory-descriptive study, with a qualitative approach. The qualitative method applies to the study of history, relationships, representations, perceptions, and opinions resulting from humans' view of themselves, their ways of living and building their artifacts, as well as their feelings and thoughts (9) . The Theory of Social Representations has been chosen as a theoretical-methodological reference. This reference makes it possible to make something unfamiliar, or even the non-familiarity, and to this end it uses two mechanisms called projective techniques: anchorage and objectification, which act on the basis of memory (8) . The study was developed with elderly women living in rural areas, linked to the rural Family Health Strategy (FHS) of a city located in the northwest region of Rio Grande do Sul, in the months of July and August of 2013. Previous contact was made with the nurse responsible for the rural FHS, who, through a Community Health Agent (CHA), has organized a workshop with elderly women living in rural areas. The participants of the study were 12 elderly women residing in the rural area of the study scenario city. The following inclusion criteria have been used: to be aged 60 years or over, and to present cognitive conditions to respond to the interview. For the generation of data, projective techniques have been chosen (8) , and semi-structured interviews have been used. With the projective techniques, a collage workshop was organized and held in a community hall suggested by the CHA as a place more geographically accessible to the elderly participants. In this, magazines and newspapers were made available to women, so that they could express, through the use of images (cut and pasted), thoughts and Rev Gaúcha Enferm. 2017;38(4):e68209 meanings about violence against rural women, thus, allowing the objectification. For the anchorage, the elders were asked to verbally present their knowledge about the phenomenon. The workshop was recorded in audio, with an average duration of two hours. The observations were recorded in field diary by the researcher and a research assistant, academic of the undergraduate course in Nursing. Also, in order to complement the data obtained through the workshop, semi-structured interviews have been conducted with the 12 elderly women who participated in the workshop. The sample size has been defined by the data exhaustion criterion, that is, the closure of data collection through the interviews occurred when all the eligible participants participated in the study (10) . For the interviews, an operative script has been divided into two parts: one related to the sociodemographic data of the elderly, containing closed questions; and the other part consisting of open questions regarding the object of the study, that is, the social representations of violence against rural women. Thus, during the semi-structured interviews, so that women could verbalize about situations of violence against rural women, it was necessary to instigate them from questions such as: What do you understand by violence against rural women? How do you conceptualize violence against rural women? Are you aware of the forms (types) of violence against existing rural women? Do you know or have you witnessed any type of violence against women in rural areas? It should be emphasized that the semi-structured interviews had previous scheduling, being carried out individually in the house of the participants, with an average duration of one hour. The home environment has been chosen as the locus for the interviews, considering that the elderly women could feel more at ease and comfortable to answer the questions at their own environment. During the data collection period, other people, especially neighbors, spouses and/or companions were sometimes present at the women's home for the interview. In these situations, the interviews were not carried out, since the presence of another person violates the ethical principles of the study development, as well as could interfere in the answers, besides exposing the elderly women, considering that violence against women is an issue that is surrounded by censorship. In these situations, the researcher rescheduled a new date for the interview, in order to perform it when the elderly woman was alone at home. It is important to observe that the interviews have been recorded in digital media after the consent of the elderly, guaranteeing the authenticity of the data for the analysis. It should be highlighted that prior to the data collection procedure, the participants have been clarified about the objectives, methodology, risks and benefits of the study, and the researcher read the Term of Free and Informed Consent (TFIC). After this procedure, all the elderly women who agreed to participate in the study signed the TFIC in two copies, remaining one with the participant, and the other with the researcher responsible. In order to ensure the participants' anonymity, they were identified by the letter I followed by the ordinal number according to the order of the interview (E.g.: I1, I2, I3 ... I12). The data obtained through the workshop has been analyzed in the light of the theoretical reference of the Social Representations, based on the methodological steps (11) below. The 1 st moment understood as objectification: through the process of making something thought into something real, through the collage, it was possible to form the figurative nuclei, which correspond to the themes that have the property of being represented and that express the veracity of ideas; 2 nd moment -anchorage: it corresponds to the interpretation of the elderly about the material generated in the collages, assigning a meaning to the images produced by them. Such a moment allows the collection of symbolizations and perceptions from the verbal descriptions about the knowledge regarding the phenomenon in question; later, the themes that represent this knowledge have been identified, constituting the symbolic nuclei. The 3 rd momentvalidation by the participants of the configurations given by the researcher to the social representation of violence against elderly rural women, confirming or not the identification of nuclei of this representation (11) . The 4 th moment provides for the systematization of information, grouping the main themes into figurative and symbolic nuclei (8) . Then, in the light of the theoretical reference, the anchoring about the social representation of violence against rural women for the elderly has been obtained. The semi-structured interviews have been submitted to the content analysis proposed by Minayo, which is divided into three stages: pre-analysis, exploration of the material and treatment of the results obtained and its interpretation (9) . Regarding the pre-analysis, it began with the organization of the material collected for further analysis. Initially, the complete transcription of the data obtained from the audio recordings of the workshop and semi-structured interviews has been carried out in the Word text editor, producing the corpus of the study. Afterwards, this material was printed, to facilitate the manipulation by the researcher. Then, the listening of the recordings was carried out, as well as the floating reading, Rev Gaúcha Enferm. 2017;38(4):e68209 which allowed generating the initial impressions about the material to be analyzed, coming from the two techniques of data collection. Continuing the analysis, a sequence of detailed readings has been made, from which it was possible to highlight, with a text-mark brush, the excerpts in which the speeches of the participants were similar. The exploration of the material was carried out from the segmentation of similar information contained in the transcribed material, which provided the constitution of the themes, from which the registration units emerged. These units are associated with the meaning of the phrase, which can be obtained through words, phrases and expressions (9) . Then, after the registration units have been defined, it was possible to categorize the three thematic categories through the condensation of the recurrent speeches and the isolated speeches, both relevant to the study. During the treatment phase of the results obtained and interpretation, the researcher proposed inferences and performed interpretations about the results, based on the research objective. The research originates from a course completion work (12) , and it has obeyed the ethical recommendations in force for conducting research involving human beings. The study has received a favorable opinion from the Research Ethics Committee of the Universidade Federal of Santa Maria (UFSM) with the protocol No. 17148813.0.0000.5346. Therefore, all the recommendations of the Resolution No. 466/12 of the National Health Council, which regulates the development of research with human beings, have been respected. --- RESULTS E DISCUSSION Regarding the sociodemographic characterization of the elderly women, the age ranged from 62 to 83 years old, with an average of 68.83 years old. As for marital status, eight were married or had a partner, and four were widows. With regard to schooling, nine elderly women had incomplete primary education and three had not attended school at any point in their lives. These data converge with a nationwide survey, which pointed to the fact that the majority of the rural women over the age of 60 are not literate or have only incomplete elementary education (5) . Also, in the direction of these findings, an international study revealed that the level of education is closely linked to situations of violence, so the lower the educational level, the greater the chances of experiencing situations of violence (13) . The discussions obtained through the analysis of the empirical material collected during the workshop and the semi-structured interviews have been grouped into three categories: violence anchored in extreme acts of corporal ag-gression and distant from the rural context, violence anchored in male domination and gender culture, and violence anchored in the context of life and work. --- Violence anchored in extreme acts of corporal aggression and distant from the rural context The first meaningful nucleus identified in this study presents the issues related to violence in the rural context, exposed by the elderly as events distant from their reality and visualized in most of the speeches by extreme acts of corporal aggression, signaling the difficulty of recognizing the problematic in this context. The speeches express their representations: A lot happens, but it happens more in the big city [...] we live in the countryside, there are no cases here. (I4) There is a lot of violence against women, but here, thank God, there is nothing to tell about it, because there are no cases. Violence against women exists a lot, but we are not aware. (I9) What we see is the boyfriend killing the woman, [...] we see it on television, there are fights at home and they also kill the woman. (I12) --- [...]There are many who also beat the woman [...] we watch on television. (I1) The testimonies reveal the representation of violence against women anchored in the social dimension, in which it occurs daily. However, as it is not understood as a violence, it becomes banalized and naturalized by the elderly, since this event is a common phenomenon, introjected to their daily life and that is often overlooked. In this sense, a study developed with rural Pakistani women has revealed the different forms of violence suffered by them. They are understood by psychological, sexual and physical violence. These, in turn, contribute to the findings of the study in question, since violence in the rural context is understood as intrinsic to their daily routine, that is, they do not perceive that they are being abused (13) . In this context, identifying situations of violence becomes more difficult, since the women who experience it, most of the time, do not identify that they are being abused. Thus, they perceive this violence as something natural, which is sometimes present in their lives since childhood, from relationships in the family environment, for example (14) . In this sense, a study has identified that women living in Rev Gaúcha Enferm. 2017;38(4):e68209 the rural context were treated with brutality by their companions, however, they did not understand such brutality as violence and, rather, as a common behavior that was part of their daily lives (5) . And the images they presented in the collage workshop represented the violence anchored in extreme acts, related to death and the great centers. If we lived in the big city, I think it would be a lot, kids kill parents, women get raped, but not here, there are no such things here. (I4) --- Violence is rape and death, this is the worst thing, because either you surrender or give your body or you are dead. (I2) It shows on the television those women full of bruises because the husband had hit them. [...]. (I11) The elements reveal the representation of violence as associated with violent attitudes, such as death, rape, and its occurrence as a phenomenon of the urban world, not being visualized in the daily context of the elderly women living in rural areas. A study, developed with managers in the cities of the southern half of Rio Grande do Sul, has pointed out that they also related violence to large centers and poor regions, confirming that for some managers there was no violence in rural areas (3) . These data (re)think about the non-recognition of violence in the daily lives of people living in rural areas, and its invisibility as a public health problem. --- Violence anchored in male domination and gender culture In this nucleus of meaning, contradictory aspects have been identified, because although in the first the elderly rural women represent violence against women as a phenomenon distant from the rural context, in this nucleus they mention marks of symbolic violence and gender asymmetries in their experiences, mainly related to power and male domination. The statements of the elderly revealed that the male--female relationship in the rural context is anchored in chauvinism, in which man is given the role of sovereign and dominator, holder of physical strength and other characteristics representing power. But the woman is "graced" with attributes related to fragility and submission, in which she can hardly manifest and challenge her companion. On the other hand, the elderly women recognized this behavior as belonging to the past, mentioning achievements such as employment and retirement, which were important for the economic development of women. The-se elements can be identified in the following statements: The woman is humiliated, the woman suffers all kinds of humiliation ... it seems that the man is becoming more manly. (I8) In the past women had nothing, there was no retirement, they had no job [...] if the husband said: "I'm the one who orders!", the woman would lower her head, she would never said anything, because the man was the owner, the one that ordered. (I4) Over the years the woman began to take over .. --- . she no longer admits being lowered by men. (I6) The speeches reveal the representation of violence, which are anchored in the psychological and moral perspective, considering that for women many deprivations are imposed when compared to men. Such representation is anchored in the ideology that man is the one who has power in the context of the conjugal relationship, and the woman, as a passive subject, must accept all that is imposed, without questioning. A study, which sought to outline the current generation of older women in Pernambuco, indicates that women in the rural context are associated with responsibility to the family, children and the home, a context in which, according to the women studied, "to suffer a lot" is part of their destiny, because they are women (5) . It reveals the gender violence, which is a problem that transposes the barriers of the domestic context, involving the community and the work. The relationships in society are permeated by the structural asymmetries of gender, in which the reproduction of the relations of subordination of the woman to the detriment of the man is visualized. The older women living in rural areas are seen from the perspective of work, subordination and obedience. The speeches demonstrate their role, as housewives, mothers, care takers and workers: --- She had to work, and would be hit if she would not [...]. (I9) She just has a few cows, and she defends herself with it. Only with that. Because she depends on the husband. A little is this [...] but a woman who works, who takes care of the house, the children, why be so abused? (I8) The dimensions expressed by the participants regarding situations of violence between rural men and women reveal the power and authority of man as a provider and Rev Gaúcha Enferm. 2017;38(4):e68209 head of the house. But the rural woman is seen from the perspective of subordination, obedience, and service (15) . Regarding the division of labor in the rural context, this occurs in an asymmetrical way, in which the woman, by assisting her husband in the field, is seen as the "wife of the producer", and her work is represented as aid, favoring; thus, favoring the invisibility of the work and the lack of feminine professional identity (16) . This aspect, elucidated by the speeches, points out that most rural women are financially dependent on their partners, and they are not encouraged to seek other means to provide for their livelihoods. In this way, they feel obliged to continue to bear the different manifestations of violence, in addition to the violation of their rights (4) . It is observed in the expression of these women discontentment by the absence of recognition of the domestic work on the part of their companions. Violence is seen as an old problem, which presents itself in different forms, based on patriarchal representations of women, thereby compromising relationships, highlighting the inequalities of power, as well as the threat to the physical, moral and psychological integrity of women (17) . In this direction, the home environment is the space in which older women suffer more abuse when compared to men. And considering that the phenomenon of gender violence against the elderly occurs primarily at the heart of the family, in Brazil there are still no records about this kind of violence, given that issues such as these are not identified as a social phenomenon (18) . Also, it is possible to visualize the aspects related to the influence of culture and generation on the reproduction of violence against the elderly women residing in rural areas. The speeches represent the above: I remember that since my family, my parents, that the father was the macho, he was the boss, so the mother was quiet [...], because she had no time for anything [...](I4) [...] the neighbors were generally all the same ... they were in charge of women and they obeyed [...] --- this is also violence. (I5) It is observed in the narrative that the elderly women represent violence in family relations, in which the role of women in this space is based on submission and coercion, and there is no possibility of challenging the facts. This is anchored in the reproduction of violence taking into account culturally imposed ideologies. Corroborating with these findings, a study with 354 rural Nicaraguan women reveals that 20% of these women have observed situa-tions of physical, psychological or sexual violence against their mothers (19) . In many instances, the representation of violence against women in the rural context anchored in gender heterogeneities is seen, in which the social role of women is restricted to the home environment, based on the relationships of subordination and obedience, whereas man is seen as the reference in the family unit. These facts reaffirm the gender stereotypes already instituted, derived from social and cultural ideologies. --- Violence anchored in the context of life and work The third nucleus of meaning reveals the representational elements directed to the life and work context of women living in rural areas, which shows the deprivation of the right to study, depending on the work. The speeches express these representations: Those years we did not study. They did not want us to study, we had to work. (I3) I studied until the middle of the year of the third grade, then,my father took me to work in the field, because at that time the parents did not offer education. (I10) --- Oh, I never went to class [...] my father never wanted me to. (I7) The speeches point out that the aging generations of women had difficulty accessing school when they were young. Traditionally, these women did not study because they continued to live in the countryside, married to men of the same environment, continuing their lives and production established in their families. Nowadays, there is a tendency among rural women to leave home to seek new alternatives, both for study and for paid work. This empowerment of rural women is associated with their participation in social movements, which tends to grant them greater autonomy (20) . The insertion of rural women in the context of work is anchored in the fragility of being a woman in a scenario in which gender inequalities stand out in the male-female relationship. The role of the woman is restricted to the home environment, to the care of the children, the house, and in the aid of the crop. This is reinforced by the form of social organization of work in rural areas, where farming, considered a productive site, is a symbolic masculine domain; while the space of the home, considered as reproductive and in some ways unproductive, is the feminine symbolic domain (7) . Rev Gaúcha Enferm. 2017;38(4):e68209 The representation of these elderly women is that this form of social organization and work generates suffering, given the overload of work attributed to the rural women and the lack of recognition of their own work, as rural workers, which is observed in the following statements: The woman suffers enough [...] to have her children, to take care of the house, to help in the fields. (I4) The woman should not suffer anything, because she is everything, she raises the family, she raises her children, she has to take care of her husband, she has to do the chores. (I9) In this direction, by not recognizing the double/triple working hours of women, the established social representation is based on a discourse that makes the majority of women internalize and incorporate, through a subtle process, the "consent", thus, establishing the complicity with the masculine power, generating consequences by the excess of work (3) . The dynamics of life with double or triple working hours of the rural women occurs daily through the development of activities in the fields, in the home and in the care of the children and husband and/or companion. In this way, their work day is continuous, starting at dawn, extending until dusk. The activities developed involve the productive and domestic environments, the latter considered unproductive, that is, without economic value. Women, however, do not receive recognition for their working hours, given the gender culture (20) , in which they assume the position of "helping" the husband. --- FINAL CONSIDERATIONS The situations of violence against women have always been present in the historical construction of society and are still current; however, they require strategies for their recognition and confrontation, especially when it comes to the rural context. In this sense, it was possible with this study to understand the social representations of violence against rural women from the perspective of the elderly women who lived in rural areas. On one hand, the elderly women represented violence as distant from their life context, relating it to extreme acts of corporal aggression and to the great centers. On the other hand, they represented violence as present in their relationships, showing themselves vulnerable to domination and subordination towards men, being still seen as the "fragile sex", not having the right to question and to impose their desires. It is worth considering that the elderly women evoked these aspects when they were indu-ced to think about violence against women, which leads them to infer that they perceived themselves involved in this phenomenon. It was also possible to visualize the elderly women in a context in which the attributes related to the house and children care, help in farming activities, are evidently introjected, evidencing the overlapping of roles and the overload of work, characterizing their lives as suffering. Thus, this study has provided an approximation with the different faces of violence perpetrated against women living in rural areas, and the determining and triggering factors of this phenomenon. Knowing the social representations of violence against women in the perspective of the elderly has as theoretical contributions that it can help in the (re) formulation of actions to confront violence in the health sector, as one of the sectors that can make up the network of attention to rural women in situations of violence, with a view to promoting their right to life and health. The nurse stands out as a member of this sector, which, in the rural setting, is in a privileged position to identify and intervene in situations of violence against women, since they are inserted in the territory through the Family Health Strategy. This research presents characteristic limitations of qualitative and descriptive studies. The contradictory elements that have appeared in the testimonies of the elderly women may be due to the collection scenario, or to the fact that one of the techniques of data collection approached the phenomenon of violence against rural women in a workshop with a group of women that knew each other, which may have inhibited the participants' speeches. Future research is recommended in order to give greater visibility to the violence perpetrated against women in the rural context, given the complexity of this problem and consequences for the health/illness process of the women who experience it. Moreover, the data presented here offer possibilities for the development of interventional studies, aiming at suggesting measures to promote the quality of life and health of rural women. The theme of violence against women is an object of contemporary study for the fields of health and nursing, increasingly present in scientific productions. However, researchers should be encouraged to produce research on this theme in the rural setting, given the specificities of this scenario and the population that lives in it.

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Suspicious Minds? Media effects on the perception of disability benefit claimants

The media are often blamed for widespread perceptions that welfare benefit claimants are undeserving in Anglo-Saxon countriesyet people rarely justify their views through media stories, instead saying that they themselves know undeserving claimants. In this paper, I explain this contradiction by hypothesising that the media shapes how we interpret ambiguous interpersonal contact. I focus on disability benefit claimants, which is an ideal case given that disability is often externally unobservable, and test three hypotheses over three studies (all using a purpose-collected survey in the UK and Norway, n = 3,836). In Study 1, I find strong evidence that a randomly-assigned 'benefits cheat' story leads respondents to interpret a hypothetical disability claimant as less deserving. Study 2 examines people's judgements in everyday life, finding that readers of more negative newspapers in the UK are much more likely to judge neighbours as non-genuinebut with effectively no impact on judgements of close family claimants, where ambiguity is lower. However, contra my expectations, in Study 3 I find that Britons are no more likely than Norwegians to perceive known claimants as non-genuine (despite more negative welfare discourses), partly because of different conceptions of what 'non-genuineness' means in the two countries.

Introduction Print/TV media have often been blamed for the widespread perception in Anglo-Saxon countries that benefit claimants are not 'deserving'. In the UK, longstanding concerns over newspapers (Page, 1984:40) were recently revived amidst a surge in both negative newspaper coverage and 'reality' television (e.g. Baumberg et al., 2012;Paterson et al., 2016;Reeves and de Vries, 2016). In the US, claimants have long been represented as disproportionately Black and undeserving (Gilens, 1996;Gilens, 1999;Misra et al., 2003), which has been causally related to harsh attitudes (Gilens, 1996;Hannah and Cafferty, 2006;Iyengar, 1990;Iyengar, 1991;Nelson and Oxley, 1999;Rose and Baumgartner, 2013;Shen and Edwards, 2006;Sotirovic, 2000Sotirovic, , 2001)). Yet there is a problem with these accounts: when people are asked to justify perceptions of benefit fraud, they rarely mention the media, and instead cite people they know -"we've got a neighbour who does it" (Briant et al., 2011:64). Indeed, in Briant et al.'s (2011) study, every respondent claimed to have 'first-hand knowledge' of fraudulent claims, while in Golding and Middleton (1982: 172-3), twice as many justified fraud perceptions via personal observation than media stories. Moreover, when scholars study public conversations about social issues in-depth, they find a "clear hierarchy, with personal experiences and anecdotes at the top, and media stories and statistical information at the bottom" (Rolfe et al., 2018:59; see also Gamson, 1992:123). If most people know undeserving claimants, and these perceptions are trusted more than the media, then the media's role may have been over-stated. In this paper, I present and test a new theory that resolves this contradiction, by suggesting that the deservingness we 'see' in everyday interactions is influenced by the media-influenced frames we use to make sense of the world. Surprisingly, given well-developed literatures on media effects, this argument is noveland if it is correct, it would rebut this potential challenge to media effects, explaining how the media can be powerful even in the midst of widespread everyday tales of undeservingness. I focus on disability benefits, partly because disability is the major category of benefits for working-age people internationally, 1 and partly because it is an ideal case study: it is often unobservable and fluctuating, with ambiguous signs of deservingness that are susceptible to framing effects. I use novel data to experimentally test if media-style frames can cause people to respond differently to hypothetical contact with a vignette claimant (Study 1), to test if perceptions of claimants in everyday life match my hypotheses (Study 2), and to test if perceptions vary within the different discursive contexts of the UK vs. Norway (Study 3). To begin, however, I situate my hypothesis within the wider media effects literature. --- Existing theories of the media and benefits attitudes To date, researchers have explored two main theories to explain how media coverage influences benefits attitudes: 2 1. Cultivation theory suggests that the more time people spend consuming media, the more their worldview resembles it (Morgan and Shanahan, 2010). 3 Suggestive evidence supports this: attitudes to claimants are more hostile among those who consume more negative media sources (Baumberg et al., 2012;Gilens, 1996;Sotirovic, 2000). However, establishing causality through these cross-sectional studies is difficult, given that people choose their media sources based on pre-existing needs/beliefs (Baumberg et al., 2012;Gilens, 1996). 2. Framing theory suggests that media 'frames'that is, the way that media representations organise the many pieces of information relating to an issue (Scheufele and Tewksbury, 2006)affect how people think about claimant deservingness. There are many framing studies on welfare attitudes, typically using survey experiments that present people with different narratives (Avery and Peffley, 2003;Hannah and Cafferty, 2006;Iyengar, 1990;Iyengar, 1991;Nelson and Oxley, 1999;Shen and Edwards, 2006;Slothuus, 2007). These permit stronger causal inference, and mostly show that frames impact somebut not alloutcomes (Avery and Peffley, 2003;Hannah and Cafferty, 2006;Nelson and Oxley, 1999;Shen and Edwards, 2006;Slothuus, 2007). Other methodologies also show mixed results, e.g. convincing natural experiments show both significant (Reeves and de Vries, 2016) and null effects (Hedegaard, 2014a). Nevertheless, the overall balance suggests that negative frames are likely to negatively impact attitudes. Despite this considerable evidence on benefits attitudes-media links, there is almost no evidence that has looked at the connection between media coverage and people's direct experiences (indeed, few studies have examined this even in the wider media effects literature). Those that do have mostly assumed that the media matters most where people have little direct experience of the phenomenon in the story, often citing Lippmann 1922's argument that the media have power because "our opinions cover a bigger space, a longer reach of time, a greater number of things, than we can directly observe" (Gilens, 1996:515). This assumption is explicit within some studies on benefits (Sotirovic, 2000;2001:754); for example, Gilens (1996:530-1) argues that if personal experience does not explain the perceived racial make-up of claimants, media representations must be responsible. A smaller number of researchers have studied other interactions between media representations and experiences. Some have argued that the media matters most when it resonates with people's experiences (within cultivation theory and also e.g. Gamson, 1992:125-134). Similarly, Hopkins has convincingly argued that the combination of high local levels of immigration and a 'politicizing agent' (such as the media) affects people's attitudes (Hopkins, 2011). Yet while qualitative studies show how people counter/support media stories about welfare with personal experiences (Briant et al., 2011;Paterson et al., 2016), these ideas have otherwise not been applied to studies of benefits attitudes. In my theory, in contrast, it is not that the media supplants our direct experiences, or is only powerful if it resonates with thembut rather that the media fundamentally shape our interpretation of these experiences. This is a novel argument; I now develop this into a testable theory. --- Developing a new theory Our theory starts from two observations: we know that stereotypes influence judgements about the people we interact with (Shrum, 2009:54), and that media representations influence such stereotypes (Roskos-Ewoldsen et al., 2009). It is therefore likely that media representations change the way that we judge known others via their influence on stereotypes. Yet surprisingly, this hypothesis has never been testedneither for welfare attitudes nor more broadly. Gamson (1992:125) comes closest when noting in passing that "even our personal experience is filtered through a culturally created lens : : : We walk around with hyperreal images from movies and television and use them to code our own experiences"but this is not developed further. I hypothesise: H1: Media frames influence how known welfare claimants are judged. If media frames suggest that known claimants are mainly fraudulent, then people will 'see' fraud in their everyday contact and judge claimants harshly. There is almost no previous evidence on H1. While there is considerable evidence of the effect of frames on general welfare attitudes (see above), it is not obvious that general effects will carry over to judgements of specific claimants. I know of only one framing experiment that looked at perceptions of an unrelated vignette claimant, whichdespite explicitly describing the vignette to respondents as a 'perfect example' of the storyfinds only inconsistent effects (Avery and Peffley, 2003). Secondly, my theory makes specific predictions about the circumstances in which these media effects will be found. Prima facie, stereotypes seem more likely to influence judgements based on ambiguous information; otherwise the direct information will outweigh the stereotype (Aarøe and Petersen, 2014). In the case of known welfare claimants, ambiguity will tend to be greater for less well-known acquaintances vs. close friends (our 'peripheral' vs. 'core' network; Morgan et al., 1997). I hypothesise: H2: Media frames primarily influence judgements of peripheral network members (e.g. acquaintances) where ambiguity is greater, with little/no effect on judgements of core network members (e.g. close family). While this echoes various strands of previous work, the hypothesis itself is novel. For example, intergroup contact positively influences attitudes (the 'contact hypothesis'; Hewstone and Swart, 2011), and more specifically on welfare, those who know service usersgreater policy 'proximity'will be more positive towards services (Hedegaard, 2014b). However, neither theory contrasts core vs. peripheral relationships, 4 nor do they examine how media shapes the interpretation of contact. Still, H2 parallels wider accounts that knowing claimants cancontingentlyinfluence welfare attitudes. Third, if my hypothesis holds at the individual level, we would also expect it to hold at the societal level. That is, in countries where stereotypes of welfare claimants are more negative, I expect that claimantsparticularly in peripheral networkswill be judged more harshly. To test this, I compare the UK and Norway: newspaper reporting of benefits fraud is common in the UK but rare in Norway (Larsen and Dejgaard, 2013). I hypothesise that: H3: Judgements of known welfare claimants will be more positive in Norway (vs. the UK), particularly for peripheral (vs. core) network members. We must also bear in mind wider cross-national differences in attitudes (general perceptions of undeservingness are lower in Norway 5 ) and policy (disability benefit claims in Norway are 2-3 times as prevalent; see Appendix D). But there is no reason to think that these wider differences will lead to cross-national differences in how peripheral vs. core network members are judgedhence H3 provides a useful additional test of my theory. --- Applying this to disability benefit claimants We focus on disability benefits, partly because they are the major category of working-age benefits (they are noticeably more prevalent than unemployment claims in high-income countries 1 ), and partly because they are an ideal test of my hypotheses. This may seem surprising, as the deservingness literature conventionally argues that disabled claimants in general are perceived to be deserving (Jensen and Petersen, 2017;van Oorschot, 2000van Oorschot, , 2006)), usually explained by lower average levels of control and higher levels of need (within the 'CARIN' model of van Oorschot and Roosma, 2017). However, this evidence is often misinterpreted: it shows that some disabled claimantsparadigmatic "genuine" cases evoked by terms like 'sick and disabled people' (van Oorschot, 2006) are perceived to be deserving, but does not necessarily mean that all disabled people are seen in this way. In fact, wider evidence shows that only some disabled claimants are judged to be deserving. Most directly, vignette studies show substantial variations in perceptions of different disability benefit claimants (Geiger, 2021). We can also see disabled people being differentially judged in e.g. political debates (Morris, 2016;Pennings, 2011;Soldatic and Pini, 2009) and everyday life (Hay, 2010;Holloway et al., 2007). These distinctions are usually based on whether a claimant is perceived to be 'genuinely' disabled, which is often unclear to external observersthere are few demonstrable external signs of impairments related to e.g. pain or mental ill-health (Baumberg et al., 2012:26-7;Holloway et al., 2007). Moreover, disabilities are often fluctuating, which makes even those outward signs of disability on one day an unreliable guide to capacities on another (Boyd, 2012). Disability claimants are therefore an ideal test of H1people make sharp judgements about the disabled people they know, but the outward signs of disability from interpersonal contact are ambiguous, and this ambiguity allows space for media-influenced stereotypes to influence judgements. Disability benefits are also a good test for H2: qualitative studies show that disabled people's core network tends to support their accounts, with scepticism usually reserved for more peripheral relationships (Hay, 2010:265) notwithstanding that people are occasionally judgemental about close friends/family (Holloway et al., 2007(Holloway et al., :1460)). In the conclusion I consider how far my findings are likely to extend to other types of claimant. In the rest of the paper, I test these hypotheses across three studies, all using a purpose-collected survey of nearly 4,000 people in the UK/Norway (described below). Study 1 tests if an experimentally-assigned newspaper-style story influences judgements of a specific vignette claimant (testing H1). Study 2 examines perceptions of 'non-genuine' disability claims in everyday life, testing how these vary according to media use and relationship type (testing H2). Study 3 also examines perceptions of 'non-genuine' disability claims in everyday life, but now testing differences across countries (testing H3). The studies complement one another's strengths/weaknesses: Study 1 allows confident causal inferences but weak ecological validity; whereas Studies 2 and 3 provide more tentative causal inferences but with strong ecological validity. Ethical approval was given by the lead author's institution, and replication code/data are publicly available (see Appendix I). Study 1: Survey experiment H1 hypothesises that media frames will influence how a specific disabled benefit claimant is judged. To test this, Study 1 uses a survey framing experiment, investigating if a newspaper-style article on disability benefits fraud affects judgements of a vignette disability benefit claimant. As a test of specificity, I further check that the fraud framing has no impact on judgements of non-disabled claimants (see below). Framing experiments allow strong causal inferences, and have been widely used to study the impact of the media on attitudes (see above). --- Data The experiment was embedded within a survey of 3,836 people in the UK and Norway using YouGov's opt-in panels. To achieve an approximately representative sample, panel members were invited to participate according to sociodemographic criteria, and the resulting sample was then weighted to known population totals (see Appendix E). The diversity of this sample is a strength compared to the student samples used in most previous welfare framing experiments (Hannah and Cafferty, 2006;Nelson and Oxley, 1999;Shen and Edwards, 2006;Slothuus, 2007), with rare exceptions (Avery and Peffley, 2003;Iyengar, 1991). I conducted the framing experiment in both countries because they vary considerably in welfare discourses (see H3 above); if we find similar effects in both then this supports the generalisability of my findings to other high-income countries. --- Procedures and measures Our experiment uses a sample newspaper story that had previously been developed by Ford and collaborators (embedded within the survey used for e.g. Kootstra and Roosma, 2018) based on stories in UK newspapers. The story is shown in Figure 1 below: it was seen by a random half of respondents (the 'benefits cheat frame' group), but not others (the control group). We then asked respondents to judge the deservingness of vignette claimants, each representing 'hypothetical contact' with a claimant. Rather than choosing a single vignette to represent all claimants, I used a multiple factorial design to investigate the effects of the benefits cheat frame on different claimant types. Most vignettes described disabled claimants, but some described non-disabled unemployed people, who I hypothesised would not be affected by the disability benefits cheat framing (see below). Each disabled claimant vignette contained eight experimentally-varied dimensions, while each unemployment vignette contained six dimensions (see Table 1). I obtained 8,605 disability vignette judgements and 2,468 unemployment vignette judgements from 3,836 people in Feb-May 2017. Respondents were then asked whether each vignette 'deserves to receive support from the Government while [he/she] is out of work?', giving answers on a 0-10 scale. To test H1, I examined whether those in the fraud frame group judged the disability vignettes (but not the unemployment vignettes) more harshly than those in the control group. More formally, I regress deservingness on the fraud framing vs. the control group using a simple OLS model (using cluster-robust OLS to account for the clustering of vignettes within respondents). I do not weight the data as this can increase bias in survey experiments (Mutz, 2011:114-123), nor do I include control variables as this is unnecessary and may decrease power (Mutz, 2011:124-6). In sensitivity analyses, however, I test if the results are robust to the inclusion of weights and sociodemographic controls (age, gender, children, marital status, qualifications, working status, and own benefit claims; see Appendix A). --- Results The average effect of the 'benefits cheat' story on perceived deservingness is shown in Table 2 below. This supports H1: reading the 'benefits cheat' story makes respondents judge a vignette claimant more harshly (-0.31, 95% CI -0.46 to -0.15). Table 2 also shows that this effect is found in both the UK and Norway, despite differing welfare/wider contexts, suggesting the effect is generalisable across highincome countries. To further test my hypothesised mechanism, I test whether these results are specific to disabled benefit claimants and do not carry over to non-disabled unemployed claimants (given that the story focused on the genuineness of disability, not unemployment). The results are shown in the final column of Table 2, which shows that there is no effect of the benefits cheat story on judgements of nondisabled unemployed vignettes (the difference between the impacts on disabled and unemployed vignettes is strongly significant, p<0.001). This confirms that the impact of the disability benefits cheat story is specific to hypothetical contact with disabled benefit claimants. In further sensitivity analyses (Appendix A), the findings Please read the following news story that was published in a British newspaper: --- Benefit cheat received thousands John Smith -Deputy Editor ANDY Green, a benefits cheat, received £158,000 in benefits because he claimed to be unable to leave the house, although he spent several months per year living abroad. Mr. Green told the Department of Work and Pensions that due to his condition ofagoraphobia he was unable to leave the house by himself, could not travel to strange places and was often afraid to be amongst other people. Anti-fraud examiners were alerted by a member of the public that Mr. Green had actually bought an apartment in Thailand. While he would spend several months per year in his new house, back in the UK his benefits would continue. Upon investigation, officers found out that besides the apartment, Mr. Green also frequently attended gambling events, where he would gamble with taxpayers' money. are unchanged if I include controls/weights; or exclude those failing attention checks. Overall, I find clear support for H1, although the effect is moderately small (0.3 on a 0-10 scale, ≈10% of the standard deviation of 3.06). However, it would be surprising to see a larger effect. The size of effect is not dissimilarand is more consistent across measures/sensitivity analysesto previous studies that have been interpreted as showing evidence of framing effects (e.g. Slothuus, 2007). Moreover, the newspaper-style story is muted in tone and makes no attempt to generalise 'Andy Green' to claimants in general (unlike real newspaper stories; Baumberg et al., 2012); respondents therefore have to connect a story about one person to a completely different person. Finally, while my vignettes were somewhat ambiguous, they were perhaps less so than everyday contact with peripheral networks. These suggest that my estimates may be lower bounds on real-world effects (though these must be weighed against the limitations of survey experiments), and I therefore turn to examining real-world effects directly. Study 2: Real-life deservingness judgements Study 1 provides convincing evidence that media frames can influence judgements of specific hypothetical claimants. However, this comes at the expense of ecological validity: like most social experiments, it invokes one frame without any competing ones, and removes temporal/other barriers between frame and judgement (Barabas and Jerit, 2010). To complement this, Study 2 examines how people's real-world deservingness judgements relate to media consumption in the UK. It also goes further in specifically testing H2, which hypothesised that media effects would be found for peripheral network members (e.g. acquaintances) but not core network members (e.g. close family), because of the greater amount of ambiguity when judging peripheral network members. --- Data and measures of real-world deservingness judgements We use the same YouGov survey used in Study 1, but here focus only on the UK (as my measure of welfare media coverage is only available in the UK; see below). For each of four types of social relationship (close family, close friends, distant family, and neighbours), I asked respondents (full question wording is given in Appendix G): • If they personally knew anyone with that relationship (e.g. close family) that they think has probably claimed disability benefits in the past year; • If they knew any claimants with that relationship (e.g. close family) that they thought 'are not genuinely sick or disabled' (hereafter 'non-genuine' claimants). Table 3 shows that nearly half (45.4%) of UK/Norway respondents reported knowing a disability benefit claimant per semost commonly close family or close friends (17.0-22.6%), and to a lesser extent distant family and neighbours (7.0-7.1%). Yet when looking at non-genuineness, people were more likely to know a non-genuine neighbour than a non-genuine close family member (6.0% vs. 4.1%). This is similar to recent findings in the US (Fang and Huber, 2020). To test H2, we need a fair comparison of the prevalence of non-genuineness for different relationship types, which takes account of the potentially different size of each group. Our outcome variable is therefore reports of knowing non-genuine claimants only among respondents that had already said they knew a claimant of that type, as shown in Table 4 below. 6 Using this outcome variable, we can see a clear pattern in the final column of Table 3, where claimants in core networks are less likely to be seen as non-genuine than those in peripheral relationships (30.2% of neighbours are seen as non-genuine vs. 13.6% among close family). --- Measures of media use To measure media framing of benefit claimants, I use a hand-coded content analysis of a 20% sample of all UK newspaper articles on benefits 1995-2011 (1,291 articles in total), kindly shared by Declan Gaffney (see Baumberg et al., 2012). While television is another pivotal media source and there has been an increasing use of online news sources, I focus on newspapers as in the UK they have long been particularly polarised around welfare (Page, 1984:40), and have therefore been the • Fraud, • 'Shouldn't be claiming' (not fraud), • Never worked/hasn't worked for very long time, • Large families, • Bad parenting/anti-social behaviour, • Claimants better off on benefits, • Claimants better off than workers, and • Compulsion of claimants. The resulting 'newspaper negativity' score is merged into the survey data on the basis of the newspaper that respondents report reading most regularly (see Appendix B). Note that this is a measure of general newspaper negativity to welfare, rather than the disability-specific negativity of the benefits cheat newspaper story in Study 1. The Gaffney measure reflects a decade-long average several years prior to my survey (with Reeves and de Vries, 2016 showing that short-run changes are possible). I therefore validate Gaffney's measure in the present-day using my survey: after giving half of respondents the mock article on disability benefit fraud in Study 1, I asked them how often they had read similar newspaper articles, and compared this to the newspapers they regularly read. Across 8 major UK newspapers, newspaper negativity 1995-2011 correlates reassuringly strongly with 2017 reports of disability fraud articles (r = 0.86; see Appendix B). --- Analytical approach We regressed 'self-reported contact with a non-genuine claimant' on newspaper negativity (treated as a continuous variable) alongside sociodemographic control variables (gender, age, marital status, presence of children in the household, education, working status, own benefits claims, and disability; see Appendix G) using standard logit models, allowing covariates to have different effects for each type of interpersonal contact. (In sensitivity analyses I further control for ideology and social trust). Note that I have 0-4 observations per person, depending on whether they reported knowing claimants within each relationship type, and I use cluster-robust standard errors to account for this clustering within individuals. To avoid possible misinterpretations, all results are presented as average marginal effects (Mood, 2010). --- Results H2 predicted that those who read negative newspapers would perceive greater nongenuineness among neighbours but not among close family/friends. The results are shown in Figure 2, and strongly bear out my hypothesis. There is no systematic relationship between newspaper negativity and perceptions of close friends or family, but a strong relationship for distant family and particularly neighbours (e.g. a 1% rise in newspaper negativity raises perceived non-genuineness among close friends by only 0.1% [95% CI -0.3 to 0.6%], but raises it among neighbours by 2.1% [95% CI 1.0 to 3.1%]; see Appendix H). In further analyses I also control for social trust and political ideology (which may confound the relationship between newspaper negativity and claimant judgements). These still show strong support for H2, only slightly attenuated from my main results (e.g. a 1% rise in newspaper negativity raises perceives perceived non-genuineness among close friends by <0.05% [95% CI -0.5 to 0.5%], but raises it among neighbours by 1.6% [95% CI 0.75 to 2.5%]; see Appendix A). These control variables enable us to compare the judgements of readers of different newspapers who are otherwise identical (in sociodemographics, social trust and ideology), but I should stress that this is cross-sectional observational research, and it is possible that there is both unobserved confounding or reverse causality. This reflects the different trade-offs of Study 1 and Study 2: the latter enhances ecological validity at the expense of confident causal inference. Study 3: Comparing real-life judgements in the UK vs. Norway Our final hypothesis was that Britons would be more judgemental of acquaintances vs. close family members than Norwegians, given differences in welfare discourses (H3). This uses the same YouGov data and real-life judgements as Study 2 (but unlike Study 2, now looking across both the UK and Norway). Again, I focus on perceived non-genuineness only among respondents that report knowing a claimant of that type per se (see discussion under Study 2 and below). Our analytical approach here is simple: I regress perceptions of non-genuine claimants on respondents' country using logit models, with weights but no controls. (In sensitivity analyses I further include the same controls as in Study 1). As before, I use cluster-robust standard errors to account for the clustering of responses within individuals, and present all results as average marginal effects. --- Results Contrary to expectations, Figure 3 shows no clear difference in perceptions of neighbours between the two countries (about 30% of neighbours who claim disability benefits are perceived to be non-genuine in both). Also against expectations, Norwegians perceived more non-genuineness among close family and friends, again shown in Figure 3. There is some evidence that the difference between perceptions of close family/friends vs. neighbours was slightly stronger in the UK than Norway (the specific prediction of H3)but this was small and imprecisely estimated. Sensitivity analyses that include sociodemographic controls produce effectively identical results. This is not because my choice of case studies is incorrectin my survey, Britons do indeed report seeing more disability fraud articles than Norwegians, albeit by less than expected (42.3% in the UK vs. 28.2% in Norway report seeing articles like the benefits cheat frame in Study 1 'very often' or 'quite often', a difference of 14.2% [95% CI 9.7-18.7%]). Yet this does not necessarily mean that the more positive public discourse in Norway has no impact on perceptions of known disability benefit claimants (contra H3), because of three complexities. Firstly, many respondents initially said they did not know a claimant of a particular relationship type per se, but then reported knowing a non-genuine claimant of that type (see Study 2/ Table 4/note 6). This was more common in the UK, and as these cases of perceived non-genuineness are excluded from my main analysis, this makes cross-national comparisons more difficult. It is possible when testing H3 to use a simpler outcome measure than Study 2, because we can assume that the size of different networks is similar in the two countries (i.e. that people know similar numbers of neighbours in the UK and Norway). If I therefore adopt a simpler outcome measurereported non-genuineness per sethen I find that Norwegians were only slightly more likely than Britons to know a non-genuine neighbour (17.7% more likely [95% CI 3.7-31.8%]), but much more likely than Britons to know a genuine neighbour (80.7% more likely [95% CI 55.5-105.8%]). This provides some support for H3, but I must stress this is a post-hoc exploratory analysis, rather than my initial approach. Secondly, at least 2-3 times as many people claim disability benefits in Norway compared to the UK (see Appendix D); in my survey 29.1% of Britons vs. 61.5% of Norwegians report knowing a disability benefit claimant. Assuming that people in Norway do not have greater morbidity, this means that people with less severe disabilities are more likely to be claiming disability benefits in Norwayhence the average severity of disability of claimants in Norway vs. the UK will be lower. Given that severity is linked to perceived deservingness (Geiger, 2021), this will ceteris paribus inflate the rate of perceived non-genuineness in Norway vs. the UK. This may explain why I see greater levels of perceived non-genuineness in Norway for all relationship types. Third, differences in severity are unlikely to be the full explanation, because the meaning of 'non-genuine' appears to differ between the two countries. To explore this, I asked respondents, "Think of the non-genuine claimant that you know best. How could you tell that they were not a genuine claimant?" Norwegian responses were translated into English, and then all responses were coded to an inductivelyderived coding frame (in the absence of 'don't know/refused' options, ≈20% of responses in each country were un-code-able or blank). Results for code-able responses are shown in Table 5, showing three summary codes (see Appendix C for further details): • 'Able to do more than they claim': the claimant was believed to be less sick/ disabled than they claim. This referred to either general functioning (being healthy, having an active life); specific tasks they have been observed doing (e.g. walking, odd jobs/gardening, sport/partying/socialising, holidays, shopping); lying (e.g. not using a wheelchair/stick when they think they cannot be seen, or vaguer accusations of 'malingering'); or the claimant admitting fraud/ being well. • 'Lazy/bad attitude': the claimant was believed to be lazy, or not trying hard enough to find work (or more rarely, not trying hard enough to get better). In Norway this occasionally included references to people being young, with the implication that efforts should be greater at their age. • 'Could work with support/adaptations': the claimant was believed to be capable of doing some (but not all) work, or comments that they could be working without attaching any blame (sometimes explicitly saying that it is society's fault that they are given inadequate support). This shows a strikingly different pattern of justifications in the two countries. In the UK, accusations of non-genuineness were primarily because people were thought to be 'faking it' or exaggeratingover three-quarters (77.9%) of justifications were on the grounds that the person was not as sick/disabled as they claimed to be. While this was still relatively common in Norway, it was much less dominant than in the UK (41.1% of justifications). Instead, Norwegians were much more likely to justify their perceptions of non-genuineness on the grounds that the person was lazy (or at least, not trying hard enough to work), or that despite their genuine sickness/disability, they still had the ability to work (22.6% of justifications in Norway, but virtually absent in the UK). I revise the theory in the light of these findings in the Concluding section. In the meantime, the evidence does not provide clear support for/against H3. --- Conclusions To the extent that welfare benefit claimants are seen as undeserving in the US/UK, it is often argued that the media are partly to blame. Yet this is seemingly inconsistent with the way US/UK publics primarily justify perceptions of undeservingness through their own contact with claimants, rather than through media reports. In this paper, I have tested the hypothesis that the media may still play a role by shaping how we interpret such contactparticularly contact with peripheral network ties, where outward deservingness cues are few and ambiguous, and where media-driven stereotypes may therefore play a role. I focus on disability benefits, which are not only the most commonly-claimed working-age benefits in highincome countries, but are also an ideal case study given the often ambiguous external signs of disability. We tested this using three complementary approaches: • Study 1 used a survey experiment to test if negative newspaper frames influence respondents' deservingness judgements of a hypothetical person, using a UK-Norway survey of nearly 4,000 people and a wide range of vignettes. Confirming H1, I found that a disability benefits fraud frame did indeed make people judge disability vignettes more negatively. • Study 2 used perceptions of non-genuine disability claims in real life and how this related to newspaper readership in the UK. This also supported H1: newspaper negativity was associated with a greater probability of viewing known claimants as non-genuine. This also supported H2: these associations were much stronger when judging neighbours, and there was effectively zero association of newspaper negativity with judgements of close family, where perceivers have high information and low ambiguity. • Study 3 also used perceptions of non-genuine disability claims in real life, but focused on a comparison between the UK vs. Norway (media discourses being more hostile to claimants in the former). Contra H3, I did not find that Britons were more likely to judge neighbours to be non-genuine claimants than Norwegians. In further exploratory analyses, it seemed that this may be partly because Britons were more likely to make reporting errors; partly because the average severity of disability benefit claimants in Norway is noticeably lower; and partly because in Norway there was a different conception of what 'nongenuine' meant (see below). These studies are complementary: survey experiments allow confident causal inferences but are weakly generalisable; whereas real-life associations are strongly generalisable but require more cautious causal inferences. Nevertheless, we must bear in mind the limitations that apply to each studythat framing experiments are some distance from everyday deservingness judgements; and that there is the possibility of unobserved confounding and reserve causation when looking at everyday deservingness judgements. Moreover, while YouGov opt-in panels have been widely used in academic research (e.g. Aarøe and Petersen, 2014;Jensen and Petersen, 2017;Kootstra and Roosma, 2018), and are preferable to the student samples in most previous framing experiments, there is always a risk that the samples are unrepresentative. --- Theoretical revisions Overall, the evidence mostly supports my theory that the media shapes how we interpret our interactions with disability benefit claimants. Nevertheless, H3 was not unequivocally supported, and the post-hoc analyses above suggest that the theory needs to be revised. Welfare state institutions not only shape media framings (Larsen and Dejgaard, 2013), but also the make-up of benefit claimants (extending Larsen, 2006 to consider disability). The lower threshold for disability benefits in Norway means that claimants are fundamentally different groups of people in Norway vs. the UK (indeed, disability itself is defined differently; Kapteyn et al., 2007;O'Brien, 2015). There are two plausible explanations here. More simplistically, media discourses in Norway are more generous (and lead to more generous judgements under uncertainty), but are counterbalanced by the lower average severity of disability (which leads to harsher judgements). But a more complex interpretation is that the Norwegian system is underpinned by (and underpins) a fundamentally different framing: rather than focusing on whether disability is genuine vs. fraudulent, it focuses on partial work capacity that people have an obligation to make use of, and which the state has an obligation to facilitate (McKowen, 2020). Judgements under ambiguity are therefore not just about genuineness, but also whether worklessness among genuinely disabled people is due to individual effort vs structural constraints. Going forward, I believe that it is essential to study how benefit claimants are judged under ambiguity, and how the media shapes this. However, these judgements are more complex than my original account allows. In comparative perspective, further research should therefore: • Extend the research here using multiple media framings, multiple dimensions of judgements and multiple claimant types. I hypothesise that media frames will influence judgements of other claimant groups (e.g. control over unemployment is often unobserved), but multiple dimensions of deservingness will be involvedas they are even for disabled claimants; • Test and develop the theory by studying mechanisms in more detail. This includes varying ambiguity more directly (e.g. following Petersen and Aarøe, 2013), but also qualitatively studying day-to-day social interactions, examining what external cues are given by claimants to which audiences, and how various cues are interpreted by audiences with different worldviews; • Explore comparative differences further by studying the role of welfare state institutions in constructing media narratives and claimant groups (and their interactions)while being sensitive to the many factors that influence media reporting (Baumberg et al., 2012:Ch4;McKendrick et al., 2008). --- Implications Our findings deepen the existing challenge for those seeking public support for more generous benefits policies. Such campaigners in Anglo-Saxon countries are already aware of the challenges of a hostile media context; but one implication of my results is that welfare attitudes will be sticky even in the face of new media frames, which may appear to conflict with 'common sense' grounded in everyday experience. Progressive reformers can choose three different responses to this challenge (Baumberg, 2012). One is to pursue radical reform in moments of crisis, where worldviews rupture. A second is to use 'sequencing', where institutional reforms nudge discourses in a more progressive directionfor example, to gradually increase welfare universalism, which will later create wider constituencies of interest for increased generosity. However, more research is necessary to understand how people judge one another within different welfare regimes (see previous section). Finally, we should note that past radical reforms did not require a 'golden age' of pro-welfare attitudes (Hudson et al., 2016). Even if hostile welfare attitudes are buttressed by interpretations of ambiguous everyday experience, they are neither immutable nor unchallengeable. Most of all, though, my theory rebuts a potential challenge to the impact of the media in framing welfare deservingness. When people say that their neighbours cheat benefits, this is not decisive evidence of widespread fraudinstead, these judgements are themselves part of the tangled web of media-fuelled stereotypes, political discourses and institutional design. 2 Other mechanisms have been extensively explored in the wider media effects literature, including agendasetting and priming (Scheufele and Tewksbury, 2006). However, these are rarely discussed in the benefits literature (beyond brief mentions in Gilens, 1996;Reeves and de Vries, 2016). 3 While the original formulation refers to television in general, many cultivation researchersincluding those studying benefits (Sotirovic, 2000) have focused on particular sources. 4 Interestingly, while Hedegaard finds a positive impact of core network contacts on welfare attitudes, Gelman and Margalit (2021) find null effects found for core+peripheral contacts combined. 5 In 2016, 64% of Norwegians vs. 43% of Britons agreed many people manage to obtains benefits or services they are not entitled to -Authors' analysis of weighted ESS 2016 data via http://nesstar.ess.nsd.uib.no/ webview/ 6 Some people reported knowing a non-genuine claimant when they had not initially reported knowing a claimant of that type (see final row of Table 4). This was least common among close family and most common for neighbours (where 24.4% and 64.5% of reported non-genuineness for close friends/neighbours respectively was among those who did not initially report knowing people of that type that claimed). This reflects two types of reporting errors: a response error (where people reported the closest claimant they knew, missing out more peripheral relationships) and memory errors (where people did not think of a person until prompted to think of a non-genuine claimant).

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Entrepreneurial Dynamics and Typology in Rural Development

The term "rural entrepreneurs (RE)" has become a social and rural development factor in developing countries, particularly Indonesia. This research aimed to analyze the dynamics of rural entrepreneurship and describe the typology of entrepreneurship. This research was conducted in three typologies of villages, such as (1) agricultural industry, (2) agritourism, and (3) traditional area, in Malang Regency, East Java, Indonesia. Data were collected through village observation, in-depth interviews with 90 informants, and Focus Group Discussions (FGDs). The dynamics of rural entrepreneurship were affected by various factors: (a) politics, (b) social networks, and (c) economics. Furthermore, three typologies of RE were identified: (1) political-based RE, (2) economic assetbased RE, and (3) social network-based RE. Meanwhile, entrepreneurs could accumulate rural resources, comprising local government and social-economic networks. In summary, the primary keys to encouraging social development in rural areas were providing access to economic assets and social networks and boosting entrepreneurial spirit.

INTRODUCTION Entrepreneurial dynamics is often associated with identifying opportunities and discovering and developing new business ventures, as reported by several previous studies (Audretsch & Keilbach, 2005;Bailey, 2012;Kilkenny, 2006;Nordberg, Mariussen, & Virkkala, 2020;Nwankwo & Okeke, 2017;Ruef & Lounsbury, 2015) regarding entrepreneurial dynamics by pursuing various commercial goals that may conflict with moral behavior. The emergence of more moral forms of entrepreneurship typically exhibits a clear agenda for better outcomes that focuses on "innovation and efficient use of resources to explore and utilize the opportunities, thereby fulfilling social needs sustainably" (Asuquo & Enya, 2020;Nordberg et al., 2020;Sahoo & Mondal, 2020;Squazzoni, 2009). Meanwhile, the term entrepreneurship refers to a method that provides solutions to various social issues to create economic, social, and environmental values (Al-Dajani, 2013;Escandón-Barbosa et al., 2019;Gandhi & Raina, 2018;Maksum et al., 2020;Prodanov, 2018;Snyder, 2008). In general, Entrepreneurial Dynamics and Typology….. (Handono, Hidayat, Purnomo, and Toiba) research on entrepreneurship emphasizes the discussion concerning rural development, consisting of individual, institutional, marketing, and organizational management aspects. However, explicit attention to the role of service-providing entrepreneurs in this discussion has been limited (Adro & Franco, 2020;Cucari, Wankowicz, & Falco, 2019;Mottiar, Boluk, & Kline, 2018), although several authors have emphasized the importance of entrepreneurship and rural development comprising the role of the individual, product diversity, and contribution to the overall product goals (Galvão, Mascarenhas, Marques, Braga, & Ferreira, 2020;Komppula, 2014;Liang & Paul Dunn, 2014). In addition, the role of entrepreneurs as a contributor to rural development is a less-discussed area of research. Prior research by Korsgaard et al. (2015) identified the role of entrepreneurs and village development only at the stage of involvement and development of rural development without further discussion at a later stage highlighting the contribution of the entrepreneurs. As highlighted in the previous study by Dhewanto et al. (2020), the role of the entrepreneurs as a stakeholder has contributed to goals and competitiveness, having only two subtitles: competitive microenvironment and supporting factors and resources. Entrepreneurship refers to developing new ventures that contribute to the development of goals by creating competition, cooperation, specialization, innovation, investment, growth, risk-taking, productivity, and others. However, among many contributions, problems and challenges are inseparable for an entrepreneur. For example, it was reported that owners and managers did not have the skills, expertise, or resources in most small businesses in rural areas (Futemma et al., 2020;Mahon & Hyyryläinen, 2019;Nwankwo & Okeke, 2017) and that entrepreneurship in rural areas could not recognize and neglect about the wider old business, resulting in the fact that failure or challenges were only a consequence of their actions. However, the role of entrepreneurs is deemed necessary in ensuring that stakeholders' expectations are fully met. Particularly in the agricultural sector, rice farming is significantly influenced by individual performance characteristics and entrepreneurship of farmers; farmers could enhance their quality related to farming motivation and entrepreneurial abilities, as well as be capable of maximizing the performance of rice farming (Bao, Dong, Jia, Peng, & Li, 2020;Imelda, Hidayat, & Aritonang, 2022;Matarrita-Cascante & Suess, 2020). The relationship between the role of entrepreneurs (as part of economic institutions) and village development in previous research was only discussed in a partial aspect. Entrepreneurs (as business actors) serve as a mechanism for creating development in rural areas characterized by organization (Gaddefors, Korsgaard, & Ingstrup, 2020). Elaborating further, Moore and Westley (2011) described entrepreneurship as individual activities, whereas Korber & McNaughton, (2018) defined entrepreneurs as having tough characters. In addition, other studies unveiled that entrepreneurs played complementary roles in strategies for building coalitions, designing decision-making forums, and management (Meijerink & Huitema, 2010), as well as having special abilities or entrepreneurial competencies (Ataei, Karimi, Ghadermarzi, & Norouzi, 2020). Moreover, entrepreneurship relates to the capability of mobilizing ideas, resources, and support from external sources for the benefit of the rural community (Richter, 2019) and having a profound impact (Carayannis, 2020), driving and Rural Development Research transformation and contributing to the sustainable development of rural areas (Castro-Arce & Vanclay, 2020), considering the direction of development of rural destinations (Mottiar et al., 2018), and engaging with the social system (Korsgaard & Anderson, 2011). Furthermore, both entrepreneurs and entrepreneurship affect social change (Galappaththi, Galappaththi, & Kodithuwakku, 2017), social innovation (de Fátima Ferreiro, Sousa, Sheikh, & Novikova, 2021), and dynamics of change (Lamberte, Llanto, Meyer, & Graham, 1994). Sustainable change contains hope for the availability of economic, social (Yang, Cai, & Sliuzas, 2010), political (Sievert et al., 2022), and environmental resources for future generations (Liu et al., 2022). Rural entrepreneurs must consider how agriculture can preserve ecological conditions, drive economic growth, and support political networks in the local community. Some of these aspects (economic, social, political, and environmental) must be interlinked, thereby strengthening rural entrepreneurs in their respective interests. Following the theory cited by Cochran (1965), entrepreneurship is closely related to sociological aspects. Moreover, the actual economic development emphasizes the role of cultural values in determining the supply of entrepreneurs. Several points under Chochran's theory are entrepreneurs as a personality of community capital, personality of capital as a derivative of social conditioning, expectations of the role of entrepreneurs, types of parenting and schooling, and the influence of the intrinsic character of the executive. The typology of entrepreneurship is based on the type of business, business sector, characteristics of entrepreneurs, and business linkages with various sectors. However, there is no description or typology of rural entrepreneurs (RE) based explicitly on economic assets, politics, social relations, and the dynamics of rural entrepreneurs in rural development. Therefore, this research aims to analyze the dynamics of rural entrepreneurship and describe the typology of entrepreneurship. --- RESEARCH METHOD --- Research Type This research employed a qualitative method, aiming to understand field phenomena representing relevant concepts following studies or theories of entrepreneurship and social development in rural areas of Malang Regency. A qualitative method refers to the understanding that cannot be quantified (counted). Qualitative research is characterized by several points: (a) immature concept due to the lack of theory and previous research; (b) the idea based on the existing theory can be inaccurate, imprecise, incorrect, or biased; (c) there is a need to understand, interpret, predict and describe phenomena and develop theory; and (d) the nature of the phenomenon may not correspond to a quantitative measure (Creswell, 2014;Denzin & Lincoln, 2018;Morse, 1991). This research was conducted in three villages in Malang Regency, possessing a variety of potentials for tourism, agriculture, animal husbandry, and other businesses; highly potential natural resources (topography, soil types, and others); and a community with a unique diversity of activities in managing local natural resources. The selected locations comprised (1) agricultural industry (Kucur Village), (2) agritourism (Gubugklakah Village), and (3) Entrepreneurial Dynamics and Typology….. (Handono, Hidayat, Purnomo, and Toiba) traditional area (Bambang Village) in Malang Regency, East Java, Indonesia. This research was conducted for three years, from 2019 to 2022. --- Data Sources Data sources in this research included business actors (farmers, breeders, entrepreneurs, private sector, and local government concerned) and all parties involved in social, political, economic, and environmental activities. Other data sources from 90 figures who mastered the research topic at each location were determined by purposive sampling (intentionally), as illustrated in Table 1. In its mechanism, extracting informant data required a lengthy time as it was related to implicit information. Upon completing the extraction, an abstract was constructed, and various statements conveyed by the informants were revealed in more depth. In the final step, and Rural Development Research all information regarding the role of entrepreneurs in rural development in Malang Regency was explored. Table 2 lists the characteristics of age, gender, and employment status of the 90 informants. --- Data Collection Techniques Data were collected through observation, in-depth interviews, and Forum Group Discussions (FGDs). 1. Various phenomena, problems, and needs of business actors and any changes in each research location were observed. 2. In-depth interviews were focused on critical informants, including people who knew the history of the development of land-cultivated objects, initially unnoticed by the community and naturally cultivated, later becoming the central point of commercial fields for village or rural residents. The key informants also included the surrounding community, who fully understood the strategies of farmers, entrepreneurs, the private sector, and the government in accessing various natural resources, leading to alterations in each studied village. 3. FGDs were conducted with business actors and agricultural entrepreneurs in each village. These FGDs aimed to obtain an overview of the entrepreneurs' role in rural development. --- Data Analysis Techniques The interactive model proposed by Miles, Huberman, and Saldana was employed to analyze the data, encompassing three steps: (1) condensing data, (2) presenting data, and (3) drawing conclusions and verification. Data condensation refers to selecting, focusing, simplifying, abstracting, and transforming data (Miles, Huberman, & Saldaṅa, 2014). Figure 1 illustrates the interactive model. --- FIGURE 1. INTERACTIVE MODEL BY MILES, HUBERMAN, AND SALDANA (MILES ET AL., 2014) Figure 1 demonstrates three research processes: data analysis through data condensation, data display in matrices, and conclusion drawing and verification. --- Propositions Following the research goals, several propositions were compiled and tested for validity. 1. The dynamics of RE depends on ownership of and access to social, economic, and political assets. --- Data Collection Data Display Data Condensation Conclusion Drawing/Verifying Entrepreneurial Dynamics and Typology….. (Handono, Hidayat, Purnomo, and Toiba) 2. The typology of entrepreneurs is considered capable of utilizing all or at least three assets: (1) typology of entrepreneurs with social, economic, and political assets and an entrepreneurial spirit; (2) typology of entrepreneurs with social, economic, and political assets; (3) typology of entrepreneurs with social and economic assets; and (4) typology of entrepreneurs with only economic assets. --- RESULTS AND DISCUSSION --- Dynamics of Development of Rural Entrepreneurship in Indonesia The dynamics of entrepreneurial development in Indonesia has been inseparable from various aspects and periods, starting from the Old Order, New Order, Reformation, and the present (2022), as described in Table 3. --- TABLE 3. VARIOUS ASPECTS OF RURAL ENTREPRENEURSHIP IN VARIOUS PERIODS (REGIME) --- Aspect Old Order New Order --- Based on the central policy of the local government and local creativity Table 3 presents the development, indicating trends from time to time in both aspects of the driving force of entrepreneurship and the nature or actors and typology of entrepreneurial development starting from state domination (centralistic) to the village-level (decentralistic or regional autonomy) implementation per individual entrepreneur. Development overcomes poverty, powerlessness, and inequality (Dhewanto et al., 2020). During the centralistic era, development was actualized through industrialization and commercialization between developed and developing countries, in which all forms of centralized policy were limited by the government elite (Old Order), including food policy that prioritized production quantity without regard to quality and the needs of the people. The centralized policy focuses on maximizing production at the central level (Achjar & Panennungi, 2010;Antlöv, 2003). Complexity, handling scale, and higher dependence on communication allow the development of rural local potential to be hampered (Dante, 2017;Pratama et al., 2021). Furthermore, the centralized policy eventually shifted to decentralization, enabling each region to make policy arrangements through the local government. Decentralization does not and Rural Development Research mean weakening the role of the central government but rather strengthening it by responding to the regional potential, predominantly rural areas. In line with the results of prior research (Dante, 2017;Pratama et al., 2021), the effectiveness of local government is supported by central government mechanisms, highlighting the setting of entrepreneurial potential according to the character, resources, and potential of the village (Yin, Chen, & Li, 2022); for example the phenomenon of tourist villages, arts-culture villages, and villages with other nonagricultural businesses. Since decentralization has been enacted, there has been a shift in the definition of development to a redistribution of growth with an approach to the basic needs of the community, requiring further analysis of economic development (Yin et al., 2022), human resources, infrastructure development, and projected environmental conditions for village and inter-regional development programs (Feisali & Niknami, 2021;Fuller-love, Midmore, Thomas, & Henley, 2006;Rădulescu, Marian, & Moica, 2014). The assessment of regional rankings is expected to describe the development in a particular area by identifying positive and negative transformation trends, comparing the level of stability with other regions, and assessing the effectiveness of regional management. In addition, proper management plays a vital role in ranking regions based on established criteria to analyze economic development, human resources, infrastructure development, and environmental conditions. Hence, development effectiveness is adjusted to the ability of various concerned parties or multi-disciplines to identify, control, and transform opportunities into sustainable entrepreneurship (Nugroho et al., 2021;Purnomo, 2020). The ranking of regional development is inseparable from the roles and contributions of many regional actors to build innovation systems through diverse knowledge and skills (Haugh & Talwar, 2016;Lang & Fink, 2019;Tellman, Eakin, Janssen, de Alba, & Turner, 2021). In this case, the development of each region also provides opportunities for community development, especially for each actor or individual practicing entrepreneurship. Regional and community development serve as a process based on initiative, creativity, and independence, along with government activities to enhance the concerned community's social, cultural, and economic conditions to become the integrity of the nation's progress. The process is characterized by essential elements, such as (1) community participation to improve their lives based on their strengths and abilities and (2) services and technical assistance from the government to generate initiative, along with determination to help oneself and willingness to help others. Thus far, in every sustainable development process, local stakeholders provide the participating community with a foundation of sustainable principles (social equality, economic prosperity, and ecological sustainability) (Kitchen & Marsden, 2009;Ley, 2017). This process was actualized in plans and programs, and their implementation was based on "empowerment" through guidance, coaching, and technical assistance to foster selfreliance and identity as human resources with the strength and ability to fight for their quality of life. Empowerment could positively affect behavior change, development, and contribution in the community (Alsop, Bertelsen, & Holland, 2005;Wilmsen et al., 2012) through development communication between elite governments as policymakers and the rural Entrepreneurial Dynamics and Typology….. (Handono, Hidayat, Purnomo, and Toiba) community as the object of development (Haji, 2021). Therefore, the results of case studies from the three villages unveiled variations in development communication between entrepreneurial drivers and each actor's role, forming a typology for each village based on the performed business, as displayed in Table 4. Table 4 demonstrates that the three villages (Kucur, Gubugklakah, and Bambang) were considered agricultural villages, but typology variations existed in each village. Initially, the entire community in the three villages was considered agricultural cultivators, with their respective superiority in agricultural products. In particular, Kucur Village had superior cultivation of orange trees. Gubugklakah Village possessed a superior apple crop. Meanwhile, Bambang Village owned two superior products: coffee and corn. These three villages also had vegetable commodity farming businesses, such as carrots, cabbage, and onions. However, people's livelihoods have developed to be more diverse. The potential of each village depicted variations in their typology, such as a traditional village, agricultural industry, and agritourism, respectively, with the following description. --- Agricultural Industry Kucur Village had potential in the agricultural and non-agricultural sectors, evidenced through the existence of various occupations, such as tour guides for Bukit Jabal and Lembang Gunung Sari (LGS) tours, managers of coffee farming products, breeders, wood artisans, and coolies as well as construction workers. Referring to the rising typology of Bambang Village, the people of Kucur Village had adopted many innovations, which, in this case, were inseparable from several entrepreneurial drivers (government, non-government, and individual actors). Moreover, one of the business actors (ED) in Kucur Village had developed digital marketing-based marketing of agricultural products, which could reduce the high margins of intermediaries to farmers. Likewise, the Mandiri Tani Republic (RTM) successfully conducted experiments on processing coffee into coffee powder and marketed it offline and online. Agriculture 4.0, or the agricultural industry, was actualized through a shift from traditional agriculture to smart agriculture practices, implementing the extensive use of the Internet of Things (IoT), providing future opportunities for farmers (Futemma et al., 2020;Morris & Bowen, 2020). In these agricultural industry-related efforts, the people of Kucur Village understood the strategies of digital-based entrepreneurial sustainability. --- Agritourism Gubugklakah Village, with its beautiful landscape and closeness to the Bromo Tengger-Semeru National Park (TNBTS), has great potential for various tourism activities. These include agritourism, homestays, transportation services such as jeeps, and opportunities for locals as tour guides. This potential open up other business opportunities in the trade sector, such as through shops and small stalls along the village's roads. In addition, a multi-function forest area could serve as a tourism forest, providing occupations for the local community (as tourism guides and culinary business managers). Entrepreneurship developed in this village was considered tourism-based, assisted by the Ministry of Tourism and Creative Economy policy in activating villages through developing tourist villages as a form of commercial urban agriculture. This business model combines agricultural production and tourism with developing agritourism functions from integrated and sustainable economic to environmental and social benefits (Kumalasari, Gutama, & Pratiwi, 2018;Yang et al., 2010). Entrepreneurial Dynamics and Typology….. (Handono, Hidayat, Purnomo, and Toiba) This study disclosed that the people of the three villages became the embodiment of rural entrepreneurs due to their skills in pursuing the agricultural and non-agricultural sectors. Entrepreneurship in the three villages stemmed from the community's ability to navigate opportunities and adapt them to each village's potential. Thus, village potential development was performed with a commercial orientation to boost the local community's living standard and contribute to village development. The variety of entrepreneurship in the three villages was inseparable from the "actor's role" concept to develop village potential as a livelihood diversification. Developing entrepreneurship required a network of several actors from farmers, government, universities, and stakeholders to support change activities and entrepreneurship development. --- Traditional Farming Village Branding The heterogeneous livelihoods of Bambang Village's people were conducted by utilizing abundant natural resources of sandy soil, dairy farms, and timber trees. Through this typology, the people of Bambang Village were considered business actors residing in a comfort zone due to the availability of resources in the forest. However, they tended to be less reactive or spontaneous or categorized as conservative, meaning maintaining the existing traditions and customs rather than prevailing circumstances. For example, sand mining business actors who ignored ecological sustainability focused on making profits. Hence, when a disaster such as a landslide occurred, they made efforts to deal with it. The conservative model assumes a reluctance to innovate, especially in preventing severe challenges, and tends to depend on external funding (Huttunen, 2019;Zhu et al., 2021). --- Typology of Rural Entrepreneurs (RE) The three observed villages had implemented several development programs, including community livelihood activities. The role of actors in entrepreneurship was marked by the involvement of government elites, economic institutions, business actors, and socio-cultural actors, as illustrated in Table 5. Table 5 exhibits the role of RE based on economics, politics, and social relations, contributing to village development in political, economic, social, and strength aspects to gather resources. Business continuity by entrepreneurs in rural areas depends on the involvement and mutual collaboration between 'development relations' and 'empowerment' (Fuller-love et al., 2006;Rădulescu et al., 2014;Suastika, 2017) through the identification of values and social problems adapted to local resources (social, economic, and cultural). The details of the actors from the three villages are as follows. 1. Social politics: Village government political elite (village heads, village secretaries, village treasurers, hamlet chiefs, and other village officials) 2. Economy (institution): Head of BUMDES, chair of Village Unit Cooperative (KUD), chair of LMDH, chair of Ladesta, chairs of farmer groups and farmer group associations 3. Social relations: Business actors (orange, apple, corn farmers, and others) and farmers. The observation results listed in Table 5 disclosed that the local government held the power to contribute to village development from political, economic, and social perspectives. Following the theory cited by Cochran (1965) entrepreneurship is closely related to sociological aspects, in which actual economic development becomes the emphasis on cultural values roles, determining the supply of entrepreneurs. Some points underlying Chochran's theory encompass (1) entrepreneurs as a personality of community capital, implying that an entrepreneur is part of society that reflects one's skills, style, and motives; (2) capital personality as a derivative of social conditioning, in this case, the power of an entrepreneur in his business can play a social role to create an innovation and conditioning in society; and (3) expectations of the role and role of entrepreneurs, and types of parenting and schools and their influence on the intrinsic character of the executive. However, the reality in society depicted that one's internal factors in growing up were highly influential in parenting and determining life goals in the future. The current decentralized policy gave the village government autonomy in managing its potential to improve its people's quality of life. Thus, as a local leader, the village government could influence individual entrepreneurs to develop village potential into business opportunities with a socio-cultural approach to the local community. When perceived from the personality of the government elite, the Javanese people tend to follow the decisions of their leaders with the assumption that the leaders, who are informative, creative, fair, motivating, responsible, and compromising on a common consensus, serve as the "fathers" for their community (Muzayyanah, Syahlani, Suranindyah, & Haryadi, 2014;Sutiyo & Maharjan, 2017). K* G B K G B K G B K G B Political In addition, Table 5 also illustrates how economic institutions contributed to political, social, and economic development in the three villages. Economic institutions in the three villages included (i) BUMDES with an average low contribution. There was a strong level of power to collect resources by BUMDES of Kucur, assisting the farming community in the Entrepreneurial Dynamics and Typology….. (Handono, Hidayat, Purnomo, and Toiba) village to access the leased land of BUMDES. Meanwhile, in the other two villages, the average contribution of BUMDES was considerably medium and low because it was limited to distributing subsidized fertilizers, with no participation in other innovations. Furthermore, the second economic institution (ii), forest farmer groups and farmer groups, had an average medium level of contribution in political, social, and economic aspects concerning the daily activities of the farming community to work on taxed land (owned or leased), such as in Komplangan or Tetelan land, owned by Perhutani. There were several strengths in the role of economic institutions, including political, social, and resource gathering in the villages of Gubugklakah and Bambang, because these two villages were projected to sustain their tourism forest development, especially in Gubugklakah. In Kucur Village, access to Perhutani's arable land was limited because the community considered Komplangan or Tetelan land an addition; hence, the cultivated commodities were easily maintained. The third economic institution (iii), Ladesta or tourism village institutions, possessed an average high level of contribution in Gubugklakah Village, considering the entrepreneurial typology of the village, "agritourism," thereby significantly contributing to the continuity of village development. In addition to the aforementioned economic institutions (i, ii, and iii), the role and contribution of individual business actors (from the political elite, agricultural entrepreneurs, skippers, and farm workers) were deemed pivotal. Business actors from the political elite could contribute to village development, depending on one's power to influence the actions and behavior of other entrepreneurs. Meanwhile, business actors, from farmers and skippers, contributed moderately to rural development, as they created job opportunities for other people in their village. For example, farming actors and skippers with more land area and capital ownership required labor from the farm workers to work on the land. However, farm workers did not contribute much to village development due to their tendency to meet the necessities of life for their households compared to operational village programs. The relationship among the business actors led to various typologies and connections, as portrayed in Figure 2. Figure 2 demonstrates that each typology of RE based on politics, economics, social relations, and an entrepreneurial spirit presented rural development dynamics. Economicand political-based typologies of RE strongly influenced the development of the village community. Furthermore, the typology of RE based on social relations and an entrepreneurial spirit had less influence on community development due to various roles and contributions to village development. The contribution of this diversity was precisely the impact not prominently visible and was considered to have a significant impact on rural development. Apart from that, in the blue indications, a reciprocal relationship existed between one indicator and another; for example, economic asset-based RE boosted entrepreneurship because, in reality, in rural businesses, anyone with access to significant economic assets had power in all social, economic sectors as well as politics within rural society. Elaborating further, Wiesmann and Hurni (2011) Livelihood or entrepreneurial activities in the three villages were oriented toward village development, emphasizing the role of RE by involving strategies for action, change, and innovation. This actor approach model comprises four core components: (i) action as a dynamic interaction between activities, (ii) action strategy as a combination of actions, (iii) exposure to activities and means for dynamic (socio-economic) action conditions, and (iv) enforcement of the action meaning in institutions that determine standard values, norms, evaluation of specific actions, and results of actions by actors. Through this approach, as proven in research, every actor or business actor is capable of maximizing actions in dealing with dynamic conditions by implementing the strategies through institutions and further achieving village development (Hidayat, 2017;Hidayat et al., 2019;Prastyo & Hidayat, 2016). Furthermore, the analysis results revealed that RE positively impacted rural development in various aspects, indicating that a better role of sustainable entrepreneurs could lead to better human resources, integration, and collaboration in village development. Entrepreneurial Dynamics and Typology….. (Handono, Hidayat, Purnomo, and Toiba) These results are in line with several other studies (Adro & Franco, 2020b;Dhewanto et al., 2020;Escandón-Barbosa et al., 2019;Nwankwo & Okeke, 2017;Richter, 2019;Steyaert & Hjorth, 2006;Yin et al., 2019), emphasizing that the role of entrepreneurs in rural areas could develop the self-quality or competence, finance, networking, and other aspects. Additionally, better village development is apparent to affect the social structure (village government), leading to the creative spirit, good leadership, innovation, and sound managerial practice in any management sphere (Barraket, Eversole, Luke, & Barth, 2019). The spirit of entrepreneurship in leaders (village heads) or individuals certainly provides a better outcome in developing sustainably and environmentally friendly villages (Kilkenny, 2006;Kitchen & Marsden, 2009;Sahoo & Mondal, 2020). The findings of this study follow Imelda et al. (2022), revealing the performance of task-oriented farmers. Furthermore, the entrepreneurial character of farmers who are work-oriented and optimistic about results would boost the performance of lowland rice farming (Handono & Puspita, 2019;Nugroho et al., 2021;Purnomo, 2018;Purnomo et al., 2021). This notion means that the enthusiasm and role of entrepreneurs in rural development refers to the the result or target orientation. Hence, entrepreneurs' ability and responsiveness to market challenges and local wisdom have been expected to increase. In addition, this study's findings align with the entrepreneurs' attachment to the village as an essential aspect of development commitments. The village community's feeling emphasized by rural entrepreneurs is essential to the expected outcomes and cooperation (Cucari et al., 2019;Hazarika, 2016;Komppula, 2014;Lang & Fink, 2019). --- CONCLUSION Conclusion The three observed villages had three key actors who possessed the ability to accumulate these resources: the local administration, successful entrepreneurs, and tourist activists. Briefly, this study discovered that the dynamics of rural entrepreneurship from the New Order era to the Jokowi era exhibited various rural developments, particularly in the direction of RE in the social, economic, political, and social network aspects of entrepreneurship. There were three typologies of RE: (1) political asset-based RE, (2) economic asset-based RE, and (3) social network-based RE. The RE with the most potential to drive social development in rural areas of the three typologies exhibited significant political influence, abundant economic assets, and broad social networks. Therefore, providing access to economic assets and social networks and increasing entrepreneurial spirit become the primary keys to encouraging social development in rural areas. --- Recommendations This study's findings are expected to apply to the government, NGOs, or other development agents in formulating more effective development strategies for RE. Furthermore, the recommendations for further research include integrating and collaborating internally and externally (entrepreneurs) in rural development in an integrated and and Rural Development Research sustainable manner based on local wisdom and creativity. Recommendations for RE contributing to the development must be carried out on various aspects and potential of the village, apart from impacting village development that will indirectly affect sustainable business development. In addition, future researchers are encouraged to explore the phenomenon of business actors in rural areas by implementing the existing entrepreneurial theories (by Weber, Schumpeter, and others). --- Authors' Contributions: SYH: Writing the original draft; preparation, creation, and presentation of the published work, explicitly writing the initial draft (including substantive translation). KHY: Project administration; management and coordination responsibility for the research activity planning and execution. MPR: Conceptualization; ideas, formulation, or evolution of overarching research goals. HTB: Review and editing; preparation, creation, and presentation of the published work by those from the original research group, specifically critical review, commentary, or revision-including pre-or post-publication stages. --- Conflict of interest: The authors declared no conflict of interest.

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Rituals of Contagion in Closed Religious Communities: A Case Study of Amish and Mennonite Communities in the USA During the Beginning of the COVID-19 Pandemic

At the onset of the COVID-19 pandemic, government and medical guidelines emphasized social distancing to limit exposure. These guidelines significantly impacted closed religious communities, particularly those opposed to modern technologies, such as Amish and Mennonite communities. How did these religious communities respond to COVID-19 policies in the USA? We draw data from Ohio and Pennsylvania scribe entries published in an Amish/Mennonite correspondence newspaper. While some of these communities altered church rituals to comply with government directives, others maintained communal worship without disruption. Mennonite communities were more likely to conform to guidelines.

Introduction Religious groups draw people together, sustaining a sense of community during a crisis. A mature body of sociological research demonstrates that ongoing meaningful interactions bond members to their community (Collins, 2014;Kanter, 1972;Stark & Finke, 2000). Government policies and medical guidelines that interfere with in-person interaction, such as the directives to maintain "social distance" and isolation, affect these community bonds. The World Health Organization and the US Center for Disease Control and Prevention encouraged citizens to limit contact with non-household members. Where that was impossible or impractical, they recommended that everyone maintain at least six feet of space between non-household members. Experts proclaimed that these strategies were the best tactics for limiting the transmission of COVID-19 at the beginning of the pandemic (CDC, 2020b). However, these strategies also prevented people from gathering in collective worship, which is for many religious people an essential element of their spiritual life. As Ecklund (2020) notes, "COVID-19 complicates the usual response of religious organizations in times of crisis because the prescription for protecting against the disease requires physical isolation from organizations whose main purpose is to gather." While some religious groups complied with the mandates, others resisted the government COVID-19 decrees. In particular, many US religiously conservative groups (e.g., evangelical Protestants and Christian nationalists) objected to government interference with their faith (Ali et al., 2020;Baker et al., 2020;Duran et al., 2020;Perry et al., 2020aPerry et al., , 2020b;;Pew Research Center, 2020;Stein, 2021). Pointing to puzzling inconsistencies (such as bars and restaurants facing fewer restrictions than churches), these resisters argued that COVID policies infringed on their right to worship (Ali et al., 2020;Baker et al., 2020;Duran et al., 2020;Perry et al., 2020aPerry et al., , 2020b;;Pew Research Center, 2020;Stein, 2021). Researchers found that religious conservatives and devoutly religious people and places with higher numbers of them were less likely to wear masks, social distance, or comply with stay-at-home orders (Adler Jr et al., 2021;Corcoran et al., 2022;Gonzalez et al., 2021;Hill et al., 2020Hill et al., , 2021;;Perry et al., 2020a;Pew Research Center, 2020;Scheitle & Corcoran, 2021;Schnabel & Schieman, 2022). Surveys fielded in March and June 2020 indicated that white evangelical Protestants in the USA were among the least likely to comply with these policies and the most likely to support the restrictions' termination (Pew Research Center, 2020). Christian nationalists (i.e., those who ascribe to a politically infused conservative religious ideology) were particularly resistant to COVID-19 mandates viewing them as contrary to economic prosperity and liberty (Perry et al., 2020a(Perry et al., , 2020b)). This resistance was likely also rooted in cultural distrust of medicine, the government, and science (Armer & Radina, 2006;Baker et al., 2020;Galanter, 1999;Gastañaduy et al., 2016;Glassman, 2018;Gonzalez et al., 2021;Hill et al., 2020Hill et al., , 2021;;Miller & Karkazis, 2013;Offit, 2015;Stein et al., 2022;Thompson & Kisjes, 2016;Whitehead & Perry, 2020). In response to these restrictions, some congregations simply ignored the guidelines (Baker et al., 2020;Perry & Grubbs, 2022). Others canceled services. Many adapted, some through hybrid services (e.g., online and in-person) (Almog, 2020;Baker et al., 2020;Church of England, 2020;Gjelten, 2020;Hartford Institute for Religion Research, 2021;Lange, 2020). Most of the research on religion, behavior, and pandemic policy, focuses on US evangelical Protestants and Christian nationalists. Fewer studies examine how pandemic policies affect closed religious communities (CRCs) 1 -religious communities that limit interactions between members and 2020 from all Ohio and Pennsylvania communities, home to the two largest Amish populations in the world. The newspaper publishes regular dispatches from scribes in Amish and Mennonite communities that provide updates on the authors' communities. While some communities did alter their church practices, we find that church services went on as usual for many. --- The Case: The Amish and Mennonites Anabaptist groups, including the Amish and Mennonites, separated from mainstream Protestants in sixteenth-century Europe due to differences in core beliefs. Anabaptists believed the church and the state should operate as separate entities; the church free from state power. Additionally, the name of Anabaptists, or re-baptizers, reflects the belief in adult baptism. These groups believe individuals should consciously choose to join the church when they are of an age and capacity to do so. After suffering much persecution in Europe, Amish groups migrated to the USA. Mennonite groups dispersed and settled around the world. Some groups emigrated to the USA (Kraybill, 2001;Loewen & Nolt, 2010;Nolt, 2016;Scott, 1996). Amish and Mennonite groups are distinct, with many variations within each group.2 Even so, Anabaptist groups share specific core values. These core values not only serve to unite people within the Amish and Mennonite communities but also distinguish boundaries between the CRCs and broader society. Sectarian characteristics emphasize differences that separate Anabaptist groups from the dominant culture, including behavior, dress, and social rituals. Anabaptists prioritize following God's law while emphasizing the separation of church and state. Sunday church services are recognized as a sacrament and communal worship as a sacred duty within Anabaptist communities, centralizing the role of religious beliefs (Kraybill et al., 2013). Amish and Mennonite people generally obey state and national laws but vary in the extent to which they will refuse directives that conflict with their understanding of God's higher law (Hostetler, 1993;Yoder, 2003). For example, some conservative Amish groups refuse to use reflective tape on their buggies based on theological grounds, despite state laws mandating such things for safety (Anderson, 2014;Yoder, 2003). Amish and Mennonite groups follow Biblical teachings while emphasizing the importance of living their faith through daily actions. Members of Amish and Mennonite groups build and maintain bonds within the church, organized as a spiritual and social community. The bonds translate into a strong community where members rely on one another for support (Hostetler, 1993;Kraybill, 2001;Nolt, 2016). While they share core values, Amish and Mennonite groups differ in significant ways. Many Amish congregations are constrained by geographical boundaries, as the primary means of transportation in Amish communities is horses and buggies. Approximately 20-40 families constitute an Amish congregation, and all congregations in a broader area form a settlement. The geographical closeness ensures Amish families can travel to members' homes within the same community by horses and buggies in a reasonable time frame. Mennonites are not constrained by geographical boundaries, as most Mennonite groups accept the automobile as the standard mode of transportation (Hurst & McConnell, 2010;Kraybill, 2010). In addition to different modes of transportation, technology usage varies across and within Amish and Mennonite groups. For example, many Amish people do not have access to a home telephone. Some Amish groups might use a shared community telephone outside the home for communication purposes, while the most conservative Amish groups generally rely on non-Amish neighbors if they need to make a telephone call (Kraybill, 2001;Scott & Pellman, 1999). In contrast, many Mennonite groups have no restrictions on home telephones. The prevalence of cell phones provides greater access to communication technology; however, many Amish churches limit cell phone usage to work-related issues (Ems, 2014). These guidelines encourage Amish people to keep cell phones out of the home. In-person collective rituals are a cornerstone of the Anabaptist faith. Amish services are full-day events held in members' homes. A typical Sunday includes worship, which lasts approximately three hours, followed by a meal and youth gathering. Church members spend the remainder of the afternoon visiting one another. People will often attend the services of other congregations on "off" Sundays when the home congregation does not hold church (Hostetler, 1993;Kraybill, 2001;Nolt, 2016). Most Mennonite church services are shorter than Amish services, including Sunday School meetings, and take place in a communal building. Mennonite churches often emphasize social time before or after the service. Though welcome, visitors are not as common in the Mennonite service, as there is no "off" Sunday. Mennonite congregations vary in size, ranging from 75 to 200 members, depending on affiliation (Christian Light Publications, 2020;Miller, 2019). The size of Amish church gatherings, with 20 to 40 families crowding into a home for worship and the post-service meal, creates opportunities for viral outbreaks once one member becomes infected (Thompson & Kisjes, 2016). For example, during the summer of 2014, a measles outbreak ravaged one of the largest Amish communities in the USA, spreading primarily through church contacts (Gastañaduy et al., 2016). Amish and Mennonite groups prioritize religious rituals, as these meetings represent a core value within the community. They are reluctant to disrupt their spiritual practices, even when confronted with viral contagion. Their priority on community fellowship has pronounced implications during the COVID pandemic. Likewise, patterns of (non)compliance to CDC guidelines among the Amish and Mennonites provide insight into the relationship between religious values and secular public health mandates. --- 3 Journal of Religion and Health (2022) 61:4260-4281 --- Data and Method We collected data from The Budget, an international Amish/Mennonite correspondence newspaper that focuses on US communities and currently has a circulation of around 18,500 (Stein et al., 2021). The Budget is "an important institution, serving as the major means of communication among Amish settlements" (Hostetler, 1993, p. 377). The Budget, published weekly, includes dispatches from scribes-writers who live in Amish/Mennonite communities3 across the US and world. Scribe letters typically follow a general pattern, including a report on the weather, church news, community news items-births, deaths, member health information, visiting practices, and a narrative section including any other topic of interest (Adkins, 2009;Galindo, 1994). While some scribes submit an entry every week, many write every other week or once a month (Stein et al., 2019). Most writers report on one congregation, but some cover two or more from their area. Amish intentionally keep their communities small to facilitate Sunday worship in homes. Consequently, when congregations grow too large, they split to maintain a manageable number of families (Stein et al., 2020). The scribes who report on more than one congregation are likely reporting on congregations that have split. Alternatively, some writers report on neighboring congregations that do not have a scribe to represent their congregation. We use "community" to refer to any congregation covered by the writer. We read and content-analyzed all Ohio and Pennsylvania scribe entries published between March 18th and May 6th, 2020. We coded eight editions of The Budget-March 18, and 25, April 1,8,15,22,and 29, and May 6th. Scribe letters typically report the previous week's events, which means the March 18 th -May 6th editions reflect the period from mid-March through the end of April. Ohio and Pennsylvania house the two largest Amish populations in the world and roughly 44% of all Amish congregations in the USA (Young Center for Anabaptist & Pietist Studies, 2020). It is important to note that The Budget started publishing CDC recommendations on COVID-19 in the March 11th edition, exposing readers to the guidance. We identified religious affiliation based on the location of church services mentioned in the entries. Most Amish congregations hold Sunday church in members' homes, and scribes report the site in their dispatch (e.g., "church was at Elmer Yoder's last week"). In contrast, many Mennonites use dedicated church buildings, and Mennonite scribes usually provide their church's name in their entries' header. Groups classified as Mennonite in our study include groups that meet in a communal building for church services. This classification contains groups not traditionally defined as Mennonite, such as Beachy Amish-Mennonite groups. The classification also includes horse and buggy Mennonites who use a meetinghouse for church services (Kraybill & Hurd, 2006). 4We counted the number of entries reporting in-person Sunday church to measure non-compliance with social distancing and isolation guidelines. In-person Sunday church violates the CDC's guidelines to avoid or limit contact with non-household members and avoid large gatherings. We coded whether Sunday church occurred, was canceled, or altered due to COVID-19. Specifically, we classified these alterations into broader themes. It is important to note that some communities tried different strategies as the pandemic progressed, so themes and subcategories are not mutually exclusive. Some scribes accounted for multiple weeks, reporting that their church met in person some weeks and canceled church other weeks. On "off" Sundays, those without services, Amish writers often list community members who attended church elsewhere as visitors. We classified these reports as indicating inperson Sunday church activity as any in-person rituals can spread the virus within the community. We also collected data on the number of times visitors (i.e., not community members) were mentioned as having attended in-person services. Of the 1,503 entries we coded, 78% (1178) mentioned Sunday church, whether in-person, canceled, or remote. Since Sunday church is our analytic focus, we excluded entries not mentioning Sunday church. Of these 1178 entries, we estimate the percentage that reported each category and subcategory. We provide excerpts from entries to illustrate these (sub)categories and have replaced names of people and congregations with initials. Because the number of entries varies by the community (i.e., communities that submit more entries have a greater influence on the results), we also report the percentage of communities falling into each of these (sub)categories to capture the extensiveness of these (sub)categories (Krueger, 1997). If we classified any entries tied to a particular community in a (sub)category, we counted that community as reporting that (sub)category. This allows for all communities to have an equal influence on the results. It is important to note that while most communities comprise one congregation, some have two or more affiliated congregations, and the same scribe reports on them all. There are 334 communities in our sample. Our university's Institutional Review Board determined that this study does not meet the definition of human subjects research. --- Findings We present results for two units of analysis-entries and communities. Using entries allows us to capture the number of times in-person Sunday services were held or canceled, reflecting the prevalence of (non)compliance with social distancing guidelines. However, some communities practiced more (non)compliance than others. Since there is variation in the number of entries submitted, some communities have 1 3 Journal of Religion and Health (2022) 61:4260-4281 a greater influence on the results when entries are used as the unit of analysis. Thus, we also report results with communities as the unit of analysis, which represents the percentage of communities that reported a given (sub)category at least once, that is, the prevalence of the (sub)categories across communities (Krueger, 1997). --- Business as Usual Tables 1 and2 present the prevalence of Budget entries and communities in the study period that mention Sunday church (either in person or in a modified form). Sixty-five percent of entries reported in-person Sunday church, and 94 percent of all communities had at least one entry that reported in-person Sunday church. Thus, nearly all religious communities in our sample held Sunday church at least once in-person during mid-March and April. Of entries mentioning in-person Sunday church, approximately 97 percent exclusively offered it in-person, with only 3 percent offering it in-person with a remote option. The prevalence of in-person Sunday church varies by religious affiliation, with 73 percent of Amish entries reporting inperson Sunday church compared to roughly 40 percent of Mennonite entries. Church visitors-people who visit a community to which they do not belongare an important part of Sunday church among the Amish and Mennonites. Of the entries that mentioned in-person Sunday church, roughly 61 percent mentioned visitors, corresponding to approximately 82 percent of communities identifying visitors in at least one of their entries. More Amish entries reported visitors (65%) than Mennonite entries (38%). Scribes will often note out-of-state visitors as well, "We had a large crowd at church yesterday. Visitors were J. and D. G. from Minerva, L. and R. M. and family from Tazewell, W. and R. A. G. from Guys Mills, PA, J. and C. S. from Holmes County […]" (OH, Mennonite, 3/18). Not only did members of different households within the same communities gather for in-person Sunday church, but people from other communities also attended church (some crossing state lines). The importance of Sunday church is evident amongst the Amish and Mennonites, as nearly all communities reporting into The Budget continued church after the shutdown. One Amish scribe announced that sickness in the host household led the community to relocate, but not cancel, Sunday church: "Church was planned to be at M.'s, but was changed due to sickness. (Amish, OH, 3/25). In some instances, the cancelation of services led to more visitors in communities still meeting regularly: "Visitors today were P. M.s of Somerset, who came since their church was canceled because of Pennsylvania's quarantine concerning the COVID-19" (PA, Mennonite, 3/25). An Amish scribe in PA wrote, "In the present situation we were thankful for the privilege and blessing of weekend meetings. N. G. and C. S., both from Ohio, were our speakers" (3/25). Visitors were present, and the speakers traveled from out of state. While some people continued attending Sunday church outside their communities, others were cautious. In OH, a Mennonite scribe notes, "Our church attendance was smaller, with folks taking precautions to avoid getting sick" (3/18). A Mennonite writer in PA clarified that their communities exercised precaution, "Yes, we had church yesterday. The news message was put on the church line not to attend if you had any cough or cold" (3/25). The church line, also referred to as a conference line, is a telephone service where people have a pass code or pin number to call in and listen to a presentation (live or prerecorded). In this case, the church line allowed people to call in and listen to the live church service. Some scribes noticed illness affecting their church attendance: "Church on Sun. was at S. M.s. […] Lots of people were home sick and others were coughing. Some had fever in church, not realizing how sick they were before they went. Lots of little children sick […]" (PA, Amish, 3/25). While the scribes recognized the impact of sickness on attendance, there was no mention of canceling church or restricting travel. --- Alterations to In-Person Church Thirteen percent of entries mentioning in-person Sunday church indicated altering church in some manner. Of communities describing in-person Sunday church, 16 percent reported adjusting church in at least one of their entries. Of the entries mentioning alterations, roughly 47 percent said they canceled the traditional post-church meal. This alteration was more common in Amish communities. Churches also deployed a variety of social distancing strategies. Seventeen percent of entries indicating alterations to Sunday church reported only allowing members of the same household to sit together. An Amish scribe in OH writes, "Last Sun. West district did gather in a big shop for services, sitting families together and using the 6' method" (4/22). County health departments distributed social distancing guidelines to Amish communities, as noted by an Amish scribe in OH, "E. H., bishop in South district, got a letter from the health department saying that it's okay to have church services with regulations such as families seated together and no noon meals" (4/22). Dividing the congregation into smaller meeting groups was one of the more prevalent strategies for social distancing. A Mennonite scribe in PA wrote, "Our congregation divided into 4 groups for church again. We met at R. R.'s, B. S.', C. E.'s and the Church. […] A few of our families do not want to have church via of the conference line, so the Ministry felt they could meet our needs best this way (4/29). Twenty-three percent of the alteration entries referenced prohibitions against social contact, specifically no handshaking or Christian greeting (i.e., holy kiss). Social contact limitations were more common among Amish communities in our sample. Even though these churches restricted social contact, they did not ban visitors, as documented by an OH Amish scribe, "L. M. church was at B. M.s. Visitors were J. M.s and lots of young folks. […] There was no food served and no handshakes. Quite a few were missing" (4/8). Fifteen entries mentioned other forms of "social distancing." Finally, another prominent form of social distancing was only allowing a small number of people in the congregation, whereas everyone else participated remotely. Eighteen percent of the alteration entries mentioned this: "Our Church continues to share services via Zoom and call in. Eight to ten gather at the church while the rest of us listen in from home" (OH, Mennonite, 4/22). At least one of the scribes reported having their elderly members attend Church in person, yet, they are among 1 3 Journal of Religion and Health (2022) 61:4260-4281 the most at risk of severe COVID-19 complications (CDC, 2020c). Overall, more commonly reported among Mennonite communities than Amish, this form of social distancing allowed limited numbers to enjoy in-person church. --- Cancelations/Postponements While many communities continued having in-person church, others canceled for some time. Table 3 presents the prevalence of entries and communities that canceled in-person services and those using adaptive technology. Forty-one percent of entries reported canceled in-person church, corresponding to 66 percent of communities with at least one entry mentioning canceled in-person church. Of those, only 37.5 percent of entries and 31 percent of communities mentioned remote church. Cancelation varied by religious affiliation, with 33 percent of Amish entries reporting canceling in-person church compared to 68 percent of Mennonite entries. They also differ in whether they offered technology to replace the canceled in-person service, with Mennonites being much more likely to do so (79% versus 14% of entries). An Amish scribe in OH notes, "The coronavirus flu is probably the main talk worldwide. A decision was made by the Ohio Steering Committee, the Health Department, and bishops to cancel our church services the next few Sundays" (3/25). Many scribes noted the impact of cancelations on their community. A Mennonite scribe in OH writes, "I do believe we were designed for community and to have face to face conversations. I miss my church family and my extended family and look forward to a time when we can interact freely" (4/8). Several scribes indicate the importance of fellowship. An Amish writer in OH notes, "No church news, since it's been 4 weeks since we've last had church, since the coronavirus has been around. We definitely do miss not having our church services, and the fellowship with our other church people" (4/22). Another Amish scribe writes, "We skipped a few weeks of writing, since we did not have any church news to report. We just hope and pray that we can have church service again soon. We really miss the worship and fellowship together" (OH, 4/29). --- Church Using Technology While the above alterations to in-person Sunday church are generally evident across Amish and Mennonite communities, Mennonite communities were more willing to use adaptive technology. Approximately 17 percent of entries mentioned using technology, and 21 percent of communities had at least one entry describing technological adaptations for church, whether in addition to in-person services or in place of them. Of the entries mentioning technology, 87 percent reported that members connected to a conference line/telephone. One OH Amish scribe noted, "The past few Sundays we had the privilege of listening to some very inspiring sermons via conference calls. In these trying times we adapt to circumstances the best we can. Let's continue to work together in this and also be respectful of the guidelines set in place, even if it means canceling church services, etc." (4/22). Roughly 13 percent of the entries mentioning technology described virtual church hosted on live streaming services such as Zoom or Facebook. Additionally, three entries mentioned drive-in Church. A Mennonite scribe described how, "The pulpit was brought outside, and you could just sit in your car. They had some connection via the car radio that you could hear the message." (PA, 3/25). --- Discussion During the beginning of the pandemic, when social distancing and isolation were vital for saving lives, how did CRCs, particularly those that limit communication technologies, respond to the mandates? The current study examined this question in the context of the Amish and Mennonites. We found that Sunday church continued as usual for many communities, although some canceled church or adapted services. More Mennonite communities altered church than the Amish, which is consistent with the fact that they tend to allow more technology. Religious rituals can amplify the spread of COVID-19 and become superspreader events (Majra et al., 2021). The CDC recommended cessation of in-person religious gatherings or substantial alteration following social distancing guidelines (CDC, 2020d). Some religiously conservative groups met the moratoria on worship with resistance. Numerous studies demonstrate a negative association between religious conservatism (or intense religiosity) and healthy pandemic behaviors (e.g., mask wearing, social distancing, and staying at home) (Adler Jr et al., 2021;Baker et al., 2020;Corcoran et al., 2022;Duran et al., 2020;Gonzalez et al., 2021;Hill et al., 2020Hill et al., , 2021;;Perry et al., 2020a;Pew Research Center, 2020;Scheitle & Corcoran, 2021;Schnabel & Schieman, 2022;Stein, 2021). Of course, religious resistance to public health mandates during pandemics is nothing new. Similar forms of resistance occurred in some congregations during the 1918 influenza pandemic (Marisam, 2007;Schoch-Spana, 2000). In both the 1918 influenza and COVID-19 pandemics, some congregations made headlines for violating mandates to close, alter, or restrict the size of their worship services (Galishoff, 1969;Green, 2020;Luscombe, 2020). What is new is the ability of some congregations to move their religious services online when faced with such mandates and the encouragement of governmental agencies to do so (CDC, 2020d). This solution makes such restrictions on gathering particularly burdensome for the Amish, and similar groups, who cannot shift to online services due to their sacramental limits on technology use. The Amish and Mennonites believe in abiding by the government's law when it does not conflict with God's law (Hostetler, 1993;Yoder, 2003). In cases of conflict, they comply with what they believe is God's will; however, they also believe it is God's will to do no harm. We found that several churches canceled church services early in the pandemic based on advice from local health departments but returned to in-person church a few weeks later when the mandates had lifted. Thus, many churches complied when they believed the government mandated them to do so, but 1 3 Journal of Religion and Health (2022) 61:4260-4281 not when the measures were mere recommendations. While research suggests that Christian nationalists were more likely to claim that COVID-19 social distancing guidelines violated their freedom to worship (Haynes, 2021;Perry et al., 2020b), a violation of rights was not prominent in the scribe letters. Instead, the Amish and Mennonite scribes emphasized the importance of personal interaction to maintain the spiritual and social bonds across community members. The sacred duty of communal worship in some Anabaptist communities superseded the government recommendations to limit social interaction. In May 2020, the CDC reported an outbreak of COVID-19 in an Amish community in Ohio (Ali et al., 2020). The CDC's contact tracing identified six in-person religious and social events occurring in the two preceding weeks. Our data suggest that some Amish traveled out-of-town for church because state authorities prohibited church in their location. Such travel undoubtedly amplified the virus's spread by connecting geographically distant and otherwise separate communities. Studies have found that USA states that are more religious had, on average, higher mobility during the beginning of the pandemic and were influenced less by stay-at-home orders (Hill et al., 2020(Hill et al., , 2021)). Our findings advance this research by suggesting that, at least among the Amish, some people traveled out-of-town specifically to attend church services in locations where they weren't prohibited. More research is needed on how restrictions on religious gatherings in locales may facilitate travel to less restrictive locations and impact COVID-19 infection rates. Religious conservatism and intense religiosity have generally been a barrier to healthy pandemic behaviors in the USA (Adler Jr et al., 2021;Corcoran et al., 2022;Gonzalez et al., 2021;Hill et al., 2020Hill et al., , 2021;;Perry et al., 2020a;Perry & Grubbs, 2022;Pew Research Center, 2020;Schnabel & Schieman, 2022). Yet some Amish and Mennonite congregations found ways to adapt to the COVID-19 health recommendations while maintaining their religious commitments. Adaptations that still allowed in-person services were better received and implemented among the Amish and Mennonites. Some ceased the communal meal following services, had only family sit together, prohibited physical contact, or had rotating small groups attend in person. These concessions were easier to accommodate as they still allowed them to hold to their sacrament of in-person fellowship. Yet, many communities did not alter church services in these ways. Examining what factors affect whether communities within the same religious affiliation voluntarily decide to enforce social distancing guidelines and implement them are fruitful avenues for future research. For many religious communities, concerns over COVID-19 combined with government restrictions led to canceling in-person services and transitioning to remote services through technology (Oxholm et al., 2020;VanderWeele, 2020). Indeed, the CDC recommended this (CDC, 2020d), and many congregations complied. A 2021 nationally representative sample of US congregations found that 80% of congregations offered a hybrid option for religious services (i.e., both online and in-person), 5% of congregations had services solely online, and 15% had services exclusively meet in person (Hartford Institute for Religion Research, 2021). Ninety percent of evangelical Protestant congregations offered a hybrid option (Hartford Institute for Religion Research, 2021). Unfortunately, recommendations to shift to virtual services fail to consider religious communities without the financial resources to do so and communities, like the Amish and Mennonites, whose religious beliefs prohibit or restrict it (Hostetler, 1993;Nolt, 2016). It is thus not surprising that few Amish communities used technology to hold church. On the other hand, Mennonite communities, which are more open to technology, reported using it more often for services than the Amish. While the Amish and Mennonites share many beliefs and practices, including the centrality of face-to-face interaction to bond community members together, the difference in their beliefs regarding communication technologies profoundly affected how they altered church based on social distancing and isolation guidelines. The Amish groups without technology resumed face-to-face church when government restrictions were lifted, while Mennonites and Amish groups with access to technology had greater flexibility to stay remote. As such, traditional Amish groups had a greater risk of exposure to COVID-19. More research is needed on how they and other religious groups that restrict communication technologies have responded to the challenges of COVID-19 restrictions. --- Study Limitations There are several limitations to this study. We only have data on Amish and Mennonite communities from Ohio and Pennsylvania submitted to The Budget. Even so, nearly half of all US Amish congregations reside in those states, as do the two largest Amish settlements (Young Center for Anabaptist & Pietist Studies, 2020). Additionally, as The Budget is a prominent means of communication across settlements (Hostetler, 1993;Nolt, 2008), we expect that most communities submit entries, and those submitting represent typical Amish communities. Since entries typically provide information on Sunday church and members who interacted at church, our data may undercount the number of times church was canceled as scribes may submit entries less frequently due to not having church. While there may be fewer entries per community, it is unlikely that a scribe would fail to submit an entry over two months. Additionally, some writers reported the number of weeks church was canceled in their community. Thus, the statistics we report on the prevalence of themes by communities (e.g., the percent of communities that reported canceling church) aid in correcting for undercounting canceled church when using the number of entries as the unit of analysis. Although collecting data from The Budget entries come with limitations, it also has several advantages over other data collection methods. The Amish and conservative Mennonites are CRCs that limit communication technology. Data collection through surveys or interviews is difficult during normal times and nearly impossible during a pandemic when in-person data collection was dangerous. The Budget represents a unique source of information that allowed us to collect data safely and ethically on 334 Amish and Mennonite communities in OH and PA. --- 3 Journal of Religion and Health (2022) 61:4260-4281 --- Conclusion While research on US conservative religious groups' reactions to the pandemic indicates a general resistance to government mandates during the pandemic (Adler Jr et al., 2021;Corcoran et al., 2022;Perry et al., 2020aPerry et al., , 2020b;;Pew Research Center, 2020), research on CRCs generally, and those with restrictive technology specifically, are less prevalent. The CDC identified that it is vital to understand CRCs to reduce the spread of COVID-19 (Ali et al., 2020). This study is one of the first to examine how the COVID-19 pandemic and resulting social distancing mandates have affected CRCs that restrict technology due to their religious beliefs and how they respond. The data used in this study provide an unparalleled lens into the lives of the Amish and Mennonites during the COVID-19 pandemic. More research is needed on how members of these communities cope with the pandemic, given limited opportunities for interaction (DiGregorio et al., 2021) and how they adapt to the availability of a COVID-19 vaccine (Scott et al., 2021;Stein et al., 2022). This study highlights how the broader religion and health literature must consider how religious restrictions on technology use affect the ability of certain religious groups to transfer their rituals to virtual formats, which may, in turn, affect the transmission of COVID-19 and other infectious diseases. It also impacts what intervention strategies are likely to be the most effective. Our findings suggest that interventions focusing on modifying in-person religious rituals to reduce transmission will be more likely to be implemented than interventions emphasizing virtual rituals. --- Data Availability Newspaper data is publicly available. --- Declarations Conflict of interest The authors have not disclosed any competing interests. --- Ethical approval Not Applicable. Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Healthy living behaviors in youth: a comparative study in Brazil, Colombia and Mexico.

Resumo O completo bem-estar físico, mental e social se refere a um novo conceito de saúde, muito além da ausência de doenças. Se os indivíduos são confrontados com profundas desigualdades sociais, em que fatores como etnia, moradia em zona rural ou baixo nível educacional se traduzem em um acesso menos adequado aos serviços de saúde, podendo ser um desafio adicional para aderir a comportamentos de vida saudável. O objetivo deste estudo foi avaliar a percepção de adolescentes e adultos jovens na América Latina sobre a importância dos comportamentos de vida saudável (CVS) nas esferas física, emocional e de estilo de vida. A abordagem é considerada quantitativa e descritiva, com desenho transversal. A estratégia de amostragem foi por conveniência. A amostra foi composta por 192 adultos jovens em três países da América Latina: Brasil, Colômbia e México. Os resultados mostram que os participantes priorizam um maior bem-estar emocional. Eles afirmam que a crise de saúde mudou a percepção, pois agora valorizam mais a saúde emocional e compreendem a importância da combinação dos diferentes aspectos do bem-estar. O contexto latino-americano desafia o desenho de estratégias com uma perspectiva holística da saúde, com complexidades nos domínios econômico e sociocultural. Palavras-chave Comportamento saudável,

Introduction The current health crisis has heightened the importance and value of healthy living in preventing and treating health conditions 1 . There have been many approaches to promote healthy lifestyles 2 ; some have focused on cardiorespiratory and muscular fitness to prevent and treat cardiovascular disease 3 , others conceptualize it as the integration of habits that prolong the healthspan of individuals 4 . Activities such as physical activity, consuming nutritious and healthy food, not smoking or consuming recreational drugs, and maintaining an appropriate body weight are essential to this health. The current health crisis has also pushed mental health as one of the priorities since lockdown considerably increased psychological disorders in teenagers and young adults 5 . The change in habits amid the pandemic had direct repercussions on these key pillars of wellbeing. Habits are critical for healthy living behaviors; these consist of automated responses that develop through repetition and are often performed without little or no forethought. Figure 1 depicts the four stages necessary for habit formation, starting from a decision that is sustained through time until it becomes an automatic behavior 6 . The strongness and automaticity of an established habit may pose difficulty in changing it because short-term behavioral gains may be lost in the long-term context 7 . This has to be taken into consideration when designing strategies for habit promotion or formation. Habits are forged closely in the familiar context, but socio-cultural norms and perceptions may shape them throughout time. While habits in early childhood are influenced directly by parents, self-care gradually shifts towards self-direc-tion 8 . Elements related to the individual, such as self-consciousness in teenagers and young adults, and interpersonal elements such as belonging to a group or peer pressure may impact the perception and formation of new habits. Habits related to health are no exception 9 . --- Raising challenges in Latin America Although all individuals are entitled to equal rights and opportunities, including the right to a healthy life, the integration of habits to prolong the health span seems to challenge underserved communities 10 . Latin America, a culturally diverse region with a vast territorial extension, has many challenges in promoting healthy habits. The social context is characterized by deep inequities, where factors such as ethnicity, rural residence, or low educational level translate to inadequate access to health services 11 . The eradication of poverty and the reduction of inequality in all its dimensions was a pressing issue in the political agenda; however, the pandemic aggravated these conditions. Factors such as informal employment, limited access to education, crime, urbanization patterns, lack of economic growth, and weak health or social protection system increase the vulnerability 12 . Socioeconomic status may be one of the main contributing factors to this phenomenon. Insecurity in neighborhoods discourages children and parents from staying outdoors in parks or streets 13 . Social deprivation from the community and inequality in access to health are very real problems. The monthly mean income per family in Latin America varies between 773 USD in Panama, which is one of the highest and can be as low as 175 USD, reported in Cuba 14 . Other countries such as Brazil average 335 USD, Colombia 244 USD, and Mexico 518 USD 14 . This forces families where two parents are present; both have to work to provide, which sometimes increases the frequency of the consumption of prepackaged or fast food. The consumption of healthy foods may also be limited due to their higher cost. According to the World Health Organization, the region's pressing regional challenges are obesity, depression, and anxiety 15 . A prominent factor of the complexities in the area is the alarming rate of undernutrition and the highest prevalence of childhood obesity 16 . The Latin American Federation of Obesity Societies (FLASO, for its initials in spanish), issued a consensus statement compiling data of a prevalences above 30% in obesity, which is increasing at a faster rate than in the rest of the world 17 . According to Ng et al., the highest prevalence of obesity is found in El Salvador and Paraguay for women with a prevalence of 33% and 30% respectively 18 ; and Uruguay and Chile for men with a prevalence of 23.3% and 22%, respectively. Alarming statistics from Argentina show that in children, this problem impacts 9.9% of the population. Mexico holds the second place in the world with 40% of obesity in adults 18 . Diets that are high in fat and sugar but low in micronutrient, and an increase in sedentary lifestyles are in part responsible for this phenomenon. Another level in which being overweight has its toll is on emotional and psychological dimensions 19 . In the emotional domain, depression is a major challenge. It refers to persistent feelings of sadness and loss of interest, affecting a person's behavior and often impacting daily activities and causing physical or other emotional problems 20 . Recent data shows an increasing mental health problem with a prevalence in teenagers and young adults around 10% in Latin America 21 . Studies have found that its prevalence is as high as 4.7% in Argentina and Bolivia, 5.8% in Brazil, 4.7% in Colombia, Chile and Uruguay are in 5%, Peru 4.8%, and Mexico and Venezuela follow closely with 4.2% 22 . Another increasing mental health issue is anxiety, which refers to an unpleasant emotional state characterized by feelings of tension, apprehension, and worries and by activation or arousal of the autonomic nervous system 23 . Studies have found that its prevalence is around, 6.3% in Argentina, 9.3% in Brazil, 6.5% in Chile, 5.8% in Colombia, 3.6% in Mexico, 7.6% in Paraguay, 5.7% in Peru 5.7%, and 4.4% in Venezuela. The pandemic has also taken a toll on mental health and wellbeing in the young population. A rapid survey conveyed by the United Nations Inter-national Children's Emergency Fund (UNICEF) showed that in Latin America, 27% of the population between 13 and 19 have experienced symptoms of anxiety and 15% of depression 24 . A change in emotional wellbeing may also promote other unhealthy activities such as alcohol, tobacco, and other recreational drug abuse which is a rising concern among the young population 25 . According to the World Health Organization, worldwide, more than a quarter of all people aged 15-19 years which represent 155 million adolescents are current alcohol drinkers. Alcohol and drug use in children and adolescents is associated with neurocognitive alterations that can lead to behavioral, emotional, social, and academic problems in later life. Regarding tobacco use, most studies trace its start to adolescence. Globally, at least 1 in 10 adolescents uses tobacco, although there are areas where this figure may be higher 26 . There have been many legislations that criminalize itsproduction and distribution; however, drugs such as cannabis are still heavily used in Latin America with prevalence rates between 4% and 13% 27 . It is also widely used in young people, estimates from 2018 are that at least 4.7% of people aged 15-16 years used it at least once during the year 26 . Overall, the socioeconomic inequities, as well as some aspects of the cultural and educational settings make the Latin America region a very particular ecological niche with specific and rising challenges that will need to be addressed from different approaches. --- Strategies to promote healthy living in child and adolescents According to the Healthy Living for Pandemic Event Protection (HL-PIVOT) network, adhering to healthy living behaviors (HLB) has a direct impact on a person's quality of life 8 . This provides insight not only in physical, dietary aspects, sleep habits, etc. These key elements, as well as the emotional sphere, have yielded to a holistic view of health (Figure 2). --- Physical sphere Many interventions focus on this sphere. By understanding the obesity-promoting factors stakeholders can develop targeted interventions to mitigate the problem. The major contributors to the increased rate of obesity and overweight may be understood in two levels, food, and physical activity. The food environment changes regarding global, national, neighborhood, or in the school environment. Regarding physical activity, factors that impact negatively are the reduction of walking as a transportation mode, the increase in access to motorized vehicles, and the increase in sedentary leisure activities 28 . Habits that predispose to overweight and obesity rely on the establishment throughout development and growth which makes it difficult to overcome them with cross-sectional interventions. Several programs have succesfully implement programs on prevention and reducing obesity prevalence in the region. The Plan of Action for the Prevention of Child and Adolescent Obesity (PAHO) was signed in Latin America to promote an active lifestyle, encouraging the use of bike paths or physical activity programs at school 29,30 . This initiative pushed the implementation of fiscal policies on foods with a high energy content and low in nutrients. In Mexico, it resulted in taxation of sweetened soft drinks and high-calorie food 31 . In 2016, Chile promoted labeling the front of the packages with a black-and-white warning sign if it exceeds defined limits of calories, saturated fat, sugar, and sodium 32 . This measure was adopted by Mexico in 2020 and is also being promoted by the Colombian government to promote healthier food choices 33 . In 2013, the Mexican health ministry designed and implemented the campaign called: Chécate, Mídete, Muévete to inform people about food and nutrition through public awareness. Positive and motivating messages and informa-tion were transmitted on television or radio to raise awareness about the importance of prevention through commercial spots. These messages also motivated people to attend preventive medical check-ups, as well as for receiving guidance in health promotion 34 . However, when the effectiveness of this campaign was analyzed the program was far from effectively decreasing the prevalence of overweight, obesity, and diabetes mellitus. Some of the limitations included poor outreach to rural communities and the transmission of an average of 13,000 advertisements of junk food products and 42 different brands transmitted in parallel 35 . These factors might explain why the program did not reach the originally planned impact and its cancelation afterward. In 2011, Brazil launched the Academia da Saúde Program 36 as a healthcare promotion strategy that works with the implementation of public spaces known as hubs where physical activity practices are offered to the population. These centers are part of the Primary Health Care network and have specialized exercise equipment and qualified professionals to advise the users. As a point of attention in the territory, they complement comprehensive care and strengthen health promotion actions in conjunction with other health programs and actions such as the Family Health Strategy, the Extended Family Health Centers, and Health Surveillance. --- Lifestyle sphere Lifestyle habit changes and promotion may be the most difficult areas to address in Latin America. On one hand, the family context does not foster healthy habits, which could be related to the economic struggles of the population, on the other hand, insecurity and crime throughout the regions add another level of complexity. Interventions focused on these spheres may probably be the most effective in developing healthy lifestyle habits in the long term, hence promoting a healthier status of our population. Mexico has second place in child obesity, many interventions have been made to prevent childhood and adolescent obesity. Unfortunately, there have been no results that indicate the effectiveness of these strategies. One focuses on adding an 8% tax on food with an energy content exceeding 275 Kcal per 100 grams and 0.05 USD per liter on sugar-sweetened beverages 37 . Another strategy focuses on food labeling. These labels indicate the food's caloric input, the excess of saturated fats, sugars, and sodium to raise awareness and provide guidance to the consumer. The Mexican strategy involved banning radio or television advertisements during hours in which children may be a significant part of the audience. Although different approaches were implemented, habits have not significantly modified the prevalence of overweight and obesity. Mexico still has one of the highest rates of child obesity worldwide 37 . In order to mitigate it, a threemonth-long educational intervention was designed called Healthy Recess aimed to promote healthy eating and physical activity in children. This strategy also allowed the identification of the perceptions of the target population and the implementation of health-promoting interventions. Among the activities was a traffic light system where students had to associate cards with images of food or physical activities. Green, yellow and red colors allowed students to classify food or activities according to their healthiness. Regardless, results showstudents choose their food based on flavor regardless of their caloric intake or nutritional value. This may be due to the lack of parental guidance and school environments not offering enough healthy alternatives, or the lack of healthy alternative in lunch boxes 38 . San Pedro de Pinta is a program created in 2011 in San Pedro municipality in Mexico with the purpose of recovering the public space to promote sustainable mobility, social and family interaction, and overall a healthier lifestyle 39 . This program takes place every Sunday starting at 7:00 a.m. until 1:00 p.m; families can walk with their pets and ride bikes in this avenue, where vehicular circulation remains closed and becomes 5 km-long-park. The initiative has been well received with approximately 12,000 people attending every Sunday. It teaches new generations a different city model; but more importantly, it has also created spaces that enable the establishment of healthy habits that lead to a healthier lifestyle in the long term. Unorthodox interventions have explored technology as the basis for reaching young adults 40 . This aspect could be beneficial because of the increasing number of internet users in the young sector of Latin America. The Exergames in Brazil implemented a strategy with two groups, one of them promoted physical activity-promoting interventions plus virtual games that promote healthy habits, and the second group did solely physical interventions. No difference between the two groups 41 . --- Emotional sphere Perceptions of health habits tend to be associated with the nutritional state or BMI parameters, but the multidimensional concept of health is often overlooked. Particularly in adolescents, the focus has been mainly on physical appearance and average weight, but participation in school activities to exercise a sense of belonging with friends and the school community is important as well 42 . The current health crisis has brought significant changes in this sphere as well. Social distancing and the lack of socialization in school contributed to this. A study by Genta et al. evaluated the sleep habits and quality of Brazilian adolescents and concluded the pandemic negatively affected their sleep quality 43 . A web-based survey conducted during the first peak of the pandemic in Brazilshowed the negative impact on mental health, with a high prevalence of psychiatric symptoms in young adults in Brazil. This study also showed that the young population was more susceptible to depression, anxiety, and stress during the health crisis 44 . With almost all our efforts focused on mitigating contagions and infection, emotional wellness has been overlooked. But a direct impact in the emotional sphere of wellness has been demonstrated. Among the consequences, an increase in depression (50%), anxiety (44.6%), and insomnia (34%) in heavily affected countries like China and Italy. Frontline health workers are also at risk of developing post-traumatic stress disorder (PTSD) as a consequence of the coronavirus out-break 45 . Schools have dealt with closure mainly focusing their efforts in continuing the curricular delivery, but children and young adults have also been victims of the psychological consequences of the pandemic. Some institutions have implemented programs to mitigate the consequences of social distancing in their students. Therefore, the objective of this study was to assess the perception that adolescents and young adults in Latinamerica have of the importance of healthy living behaviors (HLB) in the physical, emotional, and lifestyle spheres. --- Methodology The approach considered for this study was quantitative and descriptive with a cross-sectional design. This process allows us to identify relevant variables and data to understand a complex phenomenon. The sampling strategy was a convenience sample that consisted of 192 young adults in three countries of Latin America: Brasil, Colombia, and Mexico. As an instrument, an eight closed-ended question survey was designed following the HL-PIVOT framework of healthy living. An additional open-ended question was included to represent the psychological wellbeing of the students, which has become a priority amid the pandemic. The first question considered that participants ordered, according to their perception of importance, the eight elements of the spheres in the Healthy Living Behaviors model: physical activity, nutritional state, access to healthy food, body habitus, sleep habits, avoidance of noxious habits, emotional wellness, and spiritual wellness. The rest of the questions focus on participants' self-assessment in each of these behaviors. These items consider a 1-100 scale for participants to intuitively assess their current state. To analyze the trends in the items and the different spheres, descriptive statistics were considered. The survey also included an open-ended question that asked participants to describe how their perception of wellness evolved as a result of the pandemic. This question added some depth to understanding the perception of the students and context. As part of the analysis, we considered a content analysis, identifying themes, categories and codes to describe similarities and differences in the participants' perceptions. As part of the ethical considerations of the study, it is important to highlight that the participants were informed about the purpose and granted written informed consent. The study followed all the applicable regulations and recommendations of the Comité de ética en investigación de la Escuela de Medicina del Instituto Tecnológico y de Estudios Superiores de Monterrey ethical committee that grants approval of the research protocols. The study was conducted following the Declaration of Helsinki. --- Results Participants' ages ranged from 15 to 25 years old; however, 67% of them were in the 18-21 years range. Regarding healthy living behaviors, in general, participants prioritized the eight elements of the spheres in the Healthy Living Behaviors model. The elements that participants prioritized higher were: emotional wellness (5.9), nutritional state (5.6), and physical activity (5.2). These results are presented in Table 1. If the data is contrasted by country, 60% of Brazilian participants identified physical activity as the first choice, which was prioritized as the first choice only by 8.86% of Colombians, and 8.25% of Mexican participants. The results of Colombian and Mexican participants prioritized emotional wellness as the first choice, with 36.25% and 40.21% respectively. According to the results, participants self-assess higher on their nutritional status with a weighted mean of 77.94. The lowest self-assessment was found on avoidance of noxious habits with a mean of 29.09. These results are presented in Table 2. The results of the open-ended question included in the survey were interesting as well. Participants reflected on how their perception or priorities in healthy behaviors had changed due to the pandemic. Five categories emerged from thematic analysis: 1) awareness of needing emotional wellness, 2) transitioning to a self-care approach, 3) increase in the importance of physical activity, 4) gaining a holistic health and wellness perspective, and 5) perception that their wellbeing has being worsening during the pandemic. The highest number of participants, 28.9% stated that their awareness of needing emotional wellness increased amid the pandemic. Some extracts of their reflections are the following: My priorities changed and I focused more on my mental health (participant 4, Mexico). I value my psychological wellness because it is important for remaining focused in school (participant 12, Colombia). Emotional wellness has an impact on all aspects of your life. When you are not mentally healthy, you can't perform in your life as usual (participant 48, Mexico). According to participants, communities are now prioritizing self-care higher. I make myself a priority in my life, I consider this important to achieve my goals in life (participant 65, Colombia). I prioritize the things that make me feel happy and make me feel good (participant 1, Brasil). Close to 14.91% of them stated that it was the current health crisis which brought the opportunity to focus on the importance of this element: I now have me-time and value my self-care (participant 22, Colombia). I have spent a lot of time with myself and have learned the importance of taking care of myself (participant 75, Mexico). The importance of physical activity increased as participants spent more time in their homes. Close to 14.42%, the majority emerging from participants in Brazil, commented on this theme: I have made my physical wellness a priority in my life (participant 3, Brasil). Being sedentary kills… you have to exercise yourself (participant 1, Brasil). I have made physical activity and healthy eating a priority in my daily routine (participant 27, Mexico). Several participants took into consideration more than one of the spheres of healthy behaviors, addressing the importance of gaining holistic health wellness (11.89%). For example, some overspossed the physical and mental spheres: The pandemic made me prioritize controlling my emotions, stress, anxiety and opened my eyes to the importance of having daily physical activity, socializing, and having recreational activities to be emotionally well (participant 20, Mexico). I knew before the pandemic, but now I have seen a stronger correlation between every aspect of my health. You can't have good mental health without physical activity, a healthy diet, or relaxing activities (you can't have one without the others). I also learned to prioritize activities that make me feel good and step aside from the things that emotionally drain me (participant 10, Brasil). Others described the importance of balancing them and revisiting to analyze the needs in that specific moment of time: I give more importance to socializing, my mental health, and psychological wellness (participant 18, Mexico). It came to my attention that wellness components are not static, they change every day and the needs of each one also change on a daily basis. One component does not compensate for another (participant 6, Brasil). On the other hand, several students reported a perception of their wellbeing had being worsening during the pandemic (6.79%) My personal wellness has worsened amidst the pandemic (participant 21, Colombia). It is tough to be ok [in a wellness state] since the pandemic started (participant 4, Brasil). Some describe the causes that have impacted, for example the motivation: I don't feel motivated to exercise (participant 2, Brasil). The pandemic has affected me physically and psychologically (participant 1, Colombia). --- Discussion In this study, mental health was the highest-ranked item in participants' priorities, followed by an excellent nutritional state and physical activity. Concerns and assumptions of the psychological consequences of this pandemic have been highlighted in editorials in different countries. Now an emergence of the first reports of the toll that quarantines and social distancing measures had are being published. These range from anxiety, stress, an increase in substance abuse and can be as severe as depression, some others report an increase in suicidal idiation and suicide 46 . Undoubtedly, the current health crisis has affected the change of this perception, which was also supported by the high frequency of answers related to emotional health in the themes of the comments received. Physical activity has been one of the most traditional concepts associated with healthy living, but it is interesting to observe that emotional wellbeing was higher in the scale of importance. The results on the thematic analysis reflect the awareness of the importance of this sphere. However, the challenges in the region such as the increase of crime and the unsafety in open public spaces, might have impacted the opportunity of participants to practice exercise 13 . There is also the fact that quarantine led to social distancing and the consequent decrease of spaces available for exercising. Participants self-assessed low in some of the HLB, for example in the consumption of drugs and the integration of noxious substances as part of their habits, the study depicted a consequence of the pandemic. Substance abuse poses another interesting and raising challenge among youngsters worldwide. The complex economical and social context of Latin America and the increasing rate of substance abuse bring into focus the need for assessing and educating the population. With increasing rates of alcohol consumption 27 , and an increase in the stressors amid lockdown and the pandemic it remains to be seen if this has an impact on this parameter when pandemic is over. Probably interventions in the near future will be needed regarding these behaviors. A surprisingly high assessment of the participants in their nutritional state might be the result of the taxation policies that the different countries have implemented. This is quite important as energy-dense and nutrient-poor diets are factors that studies have linked with overweight and obesity. Still, the promotion of healthy food has still to overcome the economic and financial challenges of the Latin American context. The social interaction restrictions and quarantine measures, resulted in indoor physical activities during the pandemic in young people, even of those who were active before isolation, diminished considerably. The results of this study are similar to the results of Brito et al. 47 , as the authors demonstrated that the majority of adolescents were unable to maintain daily physical activities, despite claiming to be motivated. Some of the root causes might be lack of physical space or a safe setting to exercise. There was a clear shift in the participant's perception regarding the importance of some aspects of wellbeing amid the pandemic. The awareness of participants of the need to prioritize aspects of health such as emotional wellness. These shifts may be due to quarantine but also influenced by all the interventions that promote a healthy lifestyle that have been implemented throughout the last years. Physical aspects, which have been reported as priority, had the second importance for our participants. As an encouraging first step, life-longlearning habits depend on self-directed commitment 42 . The socioeconomic background in Latin America may contribute to a sedentary lifestyle and the growing rates of obesity. Still, the habit developmental process needs to be promoted, and the economic or social limits are yet to be addressed. Interestingly, a more holistic conception of health arose among our participants. Many of them stressed the importance of health being composed of more than one aspect of HLB, such as emotional wellness, socialization, physical activity, and nutrition. New strategies should focus on providing wellness programs with these intersections. School space might be an ideal environment to foster healthy habits that can permeate the family and the community, especially in younger individuals 6 . Strategies become more effective when they include awareness that comes from the parents so that they serve as models of healthy lifestyles. Such strategies should include in the design, the specific needs of the context and target population but also the promotion of the habits in the long term and the familiar context. Traditional healthcare has relied on the reductionist approach, nevertheless there has been a shift in this tendency and now healthcare revolves around numerous extrinsic or intrinsic aspects that influence the network of health also known as an holistic approach 2 . This was clearly perceived by some of the participants that established a correlation between each aspect of the HLB and acknowledged the interdependence between them in the reflections on the comment section. Perhaps this might be due to all the interventions of HLB promotion this population has been immersed in throughout their formative years. Main limitations of our study may reside in the cross-sectional approach that we used. The student's perception was assessed during one specific period of time and this might not be a reflection or their overall wellness. A longitudinal approach might be needed to better understand it. Also, this study took place during the pan-demic which per se could constitute a bias in the awareness on the importance of mental health. Perhaps during a less stressful time, the students' perception of the priority of mental wellness aspect could change or be scored lower in the importance scale. This is not a qualitative study but offers a glimpse into the students point of view. --- Conclusion Even though geographically different, the Latin American context shares a common pattern. The adoption of healthier behaviors face innumerable barriers, including the lack of social support, cost of adopting healthy behaviors, difficulty in daily routines, especially in time management, cultural preferences, and environmental restrictions. With social distancing amid the pandemic, a major shift in the perception of holistic wellness has emerged. Taking into focus the emotional sphere of a person's life and promoting the inclusion of different aspects of the healthy living behaviors to have an integrated perspective of health and its components. Many factors may hinder the implementation and promotion of the HLB. These need to be addressed from different approaches. First, considering the background and the ecological niche in which the population resides, it may be the main obstacle that needs to be overcomed. Second, taking into focus the problem around which strategies will be implemented. Third, taking into account the importance of promoting health as a whole, and lastly the long-term requirement to habit forging, otherwise, they will not be effective. --- Collaborations AR Garcia, M Lopez and A Mendez contributed to the design and implementation of the research. MM Diaz-Lopez, AR Garcia, A Mendez and DB Dibai contributed to the colection of the data. AR Garcia and A Mendez analyzed the data. MM Diaz-Lopez, AR Garcia, A Mendez, M Lopez and DB Dibai did the writting of the manuscript. M Lopez and A Mendez proofread and edited the final version of the manuscript. All authors provided critical feedback and helped shape the research.

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Enhancing Youth Outcomes Following Parental Divorce: A Longitudinal Study of the Effects of the New Beginnings Program on Educational and Occupational Goals

This study examined whether the New Beginnings Program for divorced families led to improvements in youth's educational goals and job aspirations six years following participation and tested whether several parenting and youth variables mediated the program effects. Participants were 240 youth aged 9-12 years at the initial assessment, and data were part of a randomized, experimental trial of a parenting skills preventive intervention targeting children's post-divorce adjustment. The results revealed positive effects of the program on youth's educational goals and job aspirations six years after participation for those who were at high risk for developing later problems at program entry. Further, intervention-induced changes in motherchild relationship quality and youth externalizing problems, internalizing problems, self-esteem, and academic competence at the six-year follow-up mediated the effects of the program on the educational expectations of high-risk youth. Intervention-induced changes in youth externalizing problems and academic competence at the six-year follow-up mediated the effects of the program on the job aspirations of high-risk youth. Implications of the present findings for research with youth from divorced families and for the public health burden of divorce are discussed. It is well documented that parental divorce is associated with multiple problems for youth that extend into adulthood, including internalizing and externalizing problems, interpersonal difficulties, poor physical health, and substance use (e.g., Amato, 2001;Chase-Lansdale, Cherlin, & Kiernan, 1995). Several studies have found that parental divorce in childhood is also linked with negative educational and occupational outcomes across the life span, such as a decreased probability of graduating from high school, after controlling for income, parental educational attainment, ethnicity, and other demographic variables (e.g., Sandefur,

of Medicine (2009) report underscored the importance of considering developmental competencies, such as educational and occupational outcomes, given that they enable the individual to be successful in subsequent developmental tasks and maintain resilience when faced with adversity. The few evaluations of programs for children from divorced families that have measured program effects on educational outcomes found that program-induced improvements in parenting led to children's enhanced academic functioning and achievement (Forgatch & DeGarmo, 1999;Wolchik, Sandler, Weiss, & Winslow, 2007). Further, only one study has examined possible mechanisms through which these programs may affect educational outcomes. Zhou et al. (2008) found that improvements in effective discipline mediated the effects of their preventive intervention, the New Beginnings Program (NBP), on grade point average at the six-year follow-up when the youth were adolescents. To date, researchers have not examined whether programs for youth from divorced families affect the formation of occupational and educational goals in adolescence, a critical developmental task (Barber & Eccles, 1992;Beal & Crockett, 2010;Card, Steel, & Abeles, 1980;Erikson, 1968) that provides the foundation for educational and job attainment in later developmental stages (Cheeseman Day & Newburger, 2002;Harackiewicz, Barron, Tauer, & Elliot, 2002). For instance, Harackiewicz, Barron, Tauer, Carter, and Elliot (2000) found that young adults' academic goals predicted their later educational achievement. Also, Judge, Cable, Boudreau, and Bretz (1995) found that individuals who reported ambitious goals for their occupational futures experienced greater objective job success, earned more and received more promotions than those who were less goal-driven. This study used data from the NBP, a randomized experimental trial of a preventive intervention for divorced families, to examine whether this program affected adolescents' educational and occupational goals. A secondary goal was to examine whether mediators of the program effects on educational and occupational goals could be identified. Two aspects of positive parenting, mother-child relationship quality and effective discipline, and four aspects of youth behaviors, externalizing problems, internalizing problems, self-esteem, and academic competence and performance, were tested based on research linking them to parental divorce and educational or occupational goals and data showing that the NBP had a positive effect on these variables. Below, we biefly describe the effects of the NBP. Then, we present research that links divorce to the potential mediators and research linking the potential mediators to academic and occupational goals. --- NBP The NBP was developed to mitigate several negative outcomes associated with parental divorce, including children's mental health problems, substance use, and social problems, by modifying risk and protective factors that have been linked with the negative post-divorce outcomes (Wolchik et al., 1993). A randomized experimental trial of the NBP, which included a mother program condition, a mother program plus child program condition, and a literature control condition, assessed both short-term and long-term effects. The trial found that the effects of the two conditions on mediators and outcomes at posttest and short-term follow-up did not differ (Wolchik et al., 2007). Thus, these two conditions have been combined in subsequent analyses of the NBP. Program effects were found at posttest on mother-child relationship quality, effective discipline, and mother/child report of children's externalizing problems and internalizing problems (Wolchik et al., 2000). The six-year follow-up showed that adolescents in the NBP condition had fewer sexual partners, lower rates of mental disorder, lower levels of internalizing and externalizing problems and substance use, and higher grade point averages (GPA) and self-esteem than participants in the literature control condition (Wolchik et al., 2007). Many of the program effects at posttest and follow-up were stronger for those with higher levels of baseline risk (Dawson-McClure, Sandler, Wolchik, & Millsap, 2004;Wolchik et al., 2000;2002;2007). --- Links between divorce, putative mediators, and educational and occupational outcomes Divorce is associated with diminished parenting, including decreased levels of warmth and responsiveness, less effective communication, and the use of harsh or coercive discipline (e.g., Astone & McLanahan, 1991;Hetherington, Cox, & Cox, 1985;Simons & Johnson, 1996). Theory and research also suggests that quality of parenting is related to adolescents' educational and occupational goals, aspirations, and engagement (Bryant, Zvonkovic, & Reynolds, 2006;Jodl, Michael, Malanchuk, Eccles, & Sameroff, 2001). For example, attachment theory proposes that, following the establishment of a secure caregiver base, children will feel safe and comfortable to explore their environments and individuate without risk to the parent-child bond (Ainsworth, 1989;Paquette, 2004). Eccles et al. (1993) further conceptualizes parents as providers of behavioral reinforcement, resources, and educational opportunities as children embark on their path to career success. Numerous studies have found support for an association between quality of parenting and youths' educational and occupational goals, aspirations, and engagement (e.g., Astone & McLanahan, 1991;Barnard, 2004;Jodl et al., 2001;Rodgers & Rose, 2001). Illustratively, Schmitt-Rodermund and Vondracek (1999) found that parental involvement in children's activities was prospectively related to more career exploration and planning in adolescence. Glasgow, Dornbusch, Troyer, Steinberg, and Ritter (1997) also showed that neglectful parenting predicted adolescents' lowered educational expectations one year later. It is well documented that children from divorced families are at an increased risk for externalizing behavior problems (e.g., Amato, 2000;2001;Amato & Keith, 1991;Hetherington, 1993) and that these problems are linked with later negative academic and occupational outcomes, both in adolescence (e.g., Andrews & Duncan, 1997) and young adulthood (Fergusson & Horwood, 1998). Fergusson and Horwood (1998) proposed that early-onset externalizing problems may lead to substance abuse and association with deviant peers, which may contribute to a lack of life opportunities in the domains of education and work. Masten et al. (2005) proposed that conduct problems in childhood could impede learning and alienate teachers and peers, which may produce deficits in educational and occupational functioning later in life. Notably, Masten et al. (2005) found that childhood externalizing problems were linked with low academic achievement and competence seven years later, when participants were adolescents. Risi, Gerhardstein and Kistner (2003) also found that children's aggression toward peers was related to a decreased probability of graduating high school 10 years later. Parental divorce has also been shown to be related to children's internalizing problems (e.g., Amato, 2000;2001;Amato & Keith, 1991;Hetherington, 1993), but the support for the link between children's internalizing problems and their educational and occupational outcomes is limited. Rapport, Denney, Chung, and Hustace (2001) found that anxiety and depression in childhood were related to later academic achievement, and that these relations were mediated through intellectual functioning and performance in the classroom. McLeod and Kaiser (2004) also showed that internalizing problems in school-aged children were related to a decreased likelihood of graduating from high school. Conversely, a number of studies have shown that externalizing problems in childhood were more predictive of later educational and occupational outcomes than were internalizing problems (Capaldi & Stoolmiller, 1999;Masten et al., 2005;McLeod & Kaiser, 2004). Masten et al. (2005) proposed that mental health problems in childhood, whether internalizing or externalizing, can inhibit success with developmental tasks, such as educational and occupational goals, through their influence on disruptive behavior and lack of engagement in the classroom. Studies have also shown that parental divorce is associated with lower self-esteem (Amato & Keith, 1991;Amato, 2001;Storksen, Roysamb, Moum, & Tambs, 2005) and decreased academic achievement during childhood and adolescence (e.g., Amato, 2001;Amato & Keith, 1991;Teachman, Paasch, & Carver, 1996). Researchers have demonstrated that both academic self-esteem and general self-esteem are linked to academic achievement and occupational goals (Ahmavaara & Houston, 2007;Emmanuelle, 2009;Pullmann & Allik. 2008). Theoretically, Baumeister, Campbell, Krueger, and Vohs (2003) suggested that individuals with higher self-esteem will be more likely to persevere when faced with failure, and Wigfield and Eccles (1994) proposed that one's belief in his or her abilities should determine expectations for success. Flouri (2006) showed that children's self-esteem at age 10 was related to their educational attainment 16 years later. Trzesniewski et al. (2006) also found that adolescents' low self-esteem was linked with a decreased likelihood of attending college and more work-related problems in adulthood. Bandura, Barbaranelli, Caprara, and Pastorelli (2001) found adolescents' academic self-efficacy was linked contemporaneously with academic performance and that academic self-efficacy and academic performance were related to the adolescents' choice to pursue challenging careers one year later. --- Contribution of the current study This study extends previous research by examining whether a preventive intervention for youth from divorced families has positive effects on educational and occupational goals in adolescence. In addition, it examines whether program effects on educational and occupational goals are accounted for by program-induced changes in mother-child relationship quality, effective discipline, and youth's externalizing and internalizing problems, self-esteem, and academic achievement. Examining whether prevention programs have positive effects on educational and occupational goals and identifying the program components that mediate these changes have theoretical and applied implications (Ginexi & Hilton, 2006;Sandler, Wolchik, Winslow, & Schenck, 2006). Currently, 10 million children live in divorced or separated households (National Center for Health Statistics, 2005). Thus, identifying programs that affect educational and occupational goals of these youth could have important implications for reducing the public health burden of parental divorce. Further, identification of the components of the program that accounted for change in these outcomes can provide guidance for program refinement and dissemination (Kazdin & Nock, 2003). This study advances existing knowledge in two important ways. First, it focuses on the developmental antecedents of occupational achievement and educational attainment in adulthood, which have significant implications for economic status and mental health throughout the lifespan (Cheeseman, Day & Newburger, 2002;Harackiewicz et al., 2002). Given the lack of previous research linking prevention programs and educational and occupational goals rather than educational attainment or occupational achievement, this study addresses a gap in the literature. Second, its use of data from a randomized trial allows a test of whether experimentally-induced changes in parenting and youth variables account for experimentally-induced effects on educational and occupational goals, thus strengthening the causal inference between these variables over those that can be drawn from previous work which has been correlational (Cole & Maxwell, 2003;Cowan & Cowan, 2002;Rutter, 2005). --- Method Participants Families were primarily recruited through divorce decrees obtained through public court records; about 20% of the sample responded to media advertisements. Participation was solicited by letters and follow-up phone calls to assess eligibility. Families that met eligibility criteria were asked to participate in an in-home recruitment visit. Eligibility criteria for participation in the trial included the child was living with the mother at least 50% of the time; the custody arrangement was expected to remain the same for the duration of the study; the divorce occurred within the last two years; the mother was not remarried, did not plan to remarry, and did not have a live-in partner; both mother and child were fluent in English; there was at least one child between the ages of 9 and 12 living in the home; and neither the mother nor child was currently receiving mental health services. In families that included more than one child between the ages of 9 and 12, one child was randomly selected for the interviews. Children who scored within the clinical range on measures of depression or externalizing problems or who endorsed current suicidal ideation were excluded and referred for treatment. The sample consisted of 240 families that were randomly assigned to one of three conditions: mother-only program (MP) (n = 81 families), dual-component program (MPCP) (n = 83 families), or literature control condition (LC) (n = 76 families). Of the families contacted by phone, 48% (n = 671) met the initial eligibility criteria. Of these families, 68% (n = 453) completed the recruitment visit; 75% (n = 341) of the recruitment visit completers agreed to participate in the intervention study; 92% (n = 315) of these families completed the pretest. We found 16% (n = 49) to be ineligible at the pretest interview; an additional 8% (n = 26) withdrew before assignment. Thus, 36% (n =240) of the eligible families were randomly assigned to condition. Analyses revealed that participating families reported significantly higher incomes (p = .03) and maternal educational level (p = .01), and had fewer children (p = .01) than refusers (n = 59) (Wolchik et al., 2000;2002). At the six-year follow-up, 218 (91%) families were interviewed. Attrition analyses comparing those who attrited between pretest and the six-year follow-up (N = 22) to those who remained in the study on baseline demographic variables and children's internalizing and externalizing problems revealed no significant attrition or condition x attrition interaction effects (Wolchik et al., 2002), indicating that attrition did not pose a threat to internal or external validity. At pretest, children were, on average, 10.34 years of age (SD = 1.1); 50% were female. Mothers' ethnicity was 90% Caucasian, 6% Hispanic, and 4% other. Average annual household income was $20,001 -$25,000; 47% of the mothers had completed some college. Legal custody arrangements were 63%, 35%, and 3% sole maternal, joint, and split, respectively; families had been separated an average of 26.7 months and divorced an average of 12.3 months. Baseline equivalence between the experimental and control conditions in regard to children's gender and age, mothers' ethnicity, household income, length of time since separation and divorce, custody arrangements, and children's internalizing and externalizing problems was examined, using χ 2 tests for the categorical variables and t-statistics for the continuous variables. No significant differences were found. In the families who participated in the six-year follow-up, youth were between the ages of 15 and 19 (M = 16.9, SD = 1.1); 49.5% were female. Mothers' ethnicity was 89% Caucasian, 6% Hispanic, and 5% other. Average annual household income was $50,001 -$55,000. Legal custody arrangements were 53%, 46% and 1% sole maternal, joint, and paternal, respectively. Families had been separated an average of 8.4 years (SD = 1.4) and divorced an average of 7.2 (SD = .55) years. --- Procedure Families were interviewed on five occasions: pretest (T1), posttest (T2), and 3-month (T3), 6-month (T4), and 6-year (T5) follow-ups. The pretest occurred prior to randomization to condition. In the present study, data collected at T1, T2, and T5 were used. At each assessment, confidentiality was explained, parents (and at the six-year follow-up, adolescents 18 or older) signed consent forms, and children signed assent forms. Mothers and youth were interviewed separately. Families received $45 at pretest and posttest; at the six-year follow-up, parents and adolescents each received $100. --- Experimental Conditions The MP targeted positive parenting (i.e., mother-child relationship quality and effective discipline), interparental conflict, and mothers' attitudes toward the father-child relationship. There were 11 group sessions (1.75 hour each); five focused on the quality of the motherchild relationship and three focused on effective discipline. Two individual sessions (1 hour each) focused on the mother's use of the program skills with her children. Sessions were led by two Master's-level clinicians and used didactic and experiential learning techniques that were based on social learning and cognitive behavioral research. The groups consisted of 8 to 10 mothers. The MPCP consisted of concurrent but separate groups for children (CP) and mothers (MP). The 11 sessions in the CP targeted adaptive coping skills, negative cognitions, and motherchild relationship quality. Social learning and cognitive behavioral research provided a foundation for program exercises; didactic material was presented and modeled by group leaders or videotapes. Youth practiced the skills in the context of games, role-plays, and, for the communication skills, in a conjoint exercise with their mothers. Groups, which consisted of 8 to 10 children, were led by two Master's-level clinicians. The MP in both conditions was identical, with the exception of the conjoint exercise on communication skills. Children and mothers in the LC each received three books about children's post-divorce adjustment and a syllabus to guide their reading. See Wolchik et al. (2000Wolchik et al. ( , 2007) ) for more information about the conditions. --- Measures Demographics-Mothers responded to demographic questions such as their children's age and living arrangement, and their own ethnicity, income, and level of education. Data taken from T1 were used in the analyses. Mother-child relationship quality-Measures of mother-child relationship quality assessed at T1, T2, and T5 were used. Mothers and youth completed a revised version of the Acceptance (10 items) and Rejection (10 items) subscales of Schaefer's (1965) Child Report of Parenting Behavior Inventory (CRPBI; Teleki, Powell, & Dodder, 1982). Parallel motherand child-report versions were used. A sample item is "My mom isn't very patient with me." Coefficient alphas were acceptable (child report α's for Acceptance = .82, .84, and .90; α's for Rejection = .82, 81, and .86 at T1, T2, and T5; mother report α's for Acceptance = .73, . 77, and .82; α's for Rejection = .74, .72, and = .73 at T1, T2 and T5, respectively). The rejection items were recoded and then the rejection and acceptance items were summed. CRPBI scores have been shown to distinguish between delinquent and normal children (Schaefer, 1965). Mothers and children completed the 10-item Open Communication subscale of the Parent-Adolescent Communication Scale (Barnes & Olson, 1985). A sample item is "Mom is always a good listener." Coefficient alpha's were acceptable (child report α's = .85 at T1, .87 at T2, .91 at T5; mother report α's = .71 at T1, .72 at T2, .83 at T5). Scores on this measure have been positively linked with psychological adjustment in adolescents (e.g., Young & Childs, 1994). In addition, mothers and children completed an adaptation of the 7-item Dyadic Routine subscale of the Family Routines Inventory (Jensen, James, Boyce, & Hartnett, 1983). A sample item is "You had time each day just to talk with your kids." Coefficient alpha's were acceptable (mother report α's = .66 at T1, .63 at T2, .84 at T5; child report α's = .71 at T1, .76 at T2, .76 at T5). Scores on this measure and children's adjustment problems have been shown to be negatively related (Cohen, Taborga, Dawson, & Wolchik, 2000). All measures used the time frame of the past month. The six measures were standardized and averaged to obtain a composite of mother-child relationship quality. Effective discipline-Effective discipline scores at T1 and T2 were used; T5 scores were not used because the program did not affect discipline at T5. Mothers reported on inappropriate discipline (5 items; α's = .75 at T1, .77 at T2), appropriate discipline (9 items; α's = .59 at T1, .59 at T2), and discipline follow-through on the Oregon Discipline Scale (11 items; α's = .78 at T1, .76 at T2; Oregon Social Learning Center, 1991). Sample items include "When your child misbehaved, how often did you yell?" (inappropriate discipline), "When your child misbehaved, how often did you restrict privileges?" (appropriate discipline), and "How often did you feel that it was more trouble than it was worth to punish your child?" (follow-through). Responses on the appropriate and inappropriate items were used to compute a ratio of appropriate-to-inappropriate discipline. Similar discipline measures have been shown to correlate with adolescents' mental health problems (e.g., Patterson & Forgatch, 1995). Also, mothers and children completed the 8-item Inconsistency of Discipline subscale of Teleki et al.'s (1982) adaptation of the CRPBI (Schaefer, 1965), which used the time frame of the past month. A sample item is "It depended on your mother's mood whether a rule was enforced or not." Coefficient alphas were adequate (mother report α's = .82 at T1, .80 at T2; child report α's = .74 at T1, .73 at T2). These four scales were standardized and averaged to create a composite score. Externalizing problems-Externalizing problems at T1, T2, and T5 were assessed using a composite of 33 mother-reported items (α's = .88 at T1, .86 at T2, .89 at T5) from the Child Behavior Checklist (CBCL; Achenbach, 1991a;Achenbach & Edelbrock, 1981) and 30 child-reported items (α's = .87 at T1, .83 at T2, .84 at T5) from the Youth Self-Report (YSR; Achenbach, 1991b). The time frame used was the last month. A sample item is "Argues a lot." Scores on the CBCL and the YSR have been shown to distinguish children receiving psychological services from normal controls (Achenbach, 1991a). Mother-and child-reports were standardized and averaged to obtain a composite score. In addition, teachers completed the six-item acting out subscale (α's = .90 at T1, .90 at T2, .89 at T5) of the Teacher-Child Rating Scale using the time frame of the last month; a sample item is "Disruptive in class." Internalizing problems-Internalizing problems at T1, T2, and T5 were measured using a composite of 31 mother-reported items (α's = .88 at T1, .85 at T2, .86 at T5) from the Child Behavior Checklist (CBCL; Achenbach, 1991a;Achenbach & Edelbrock, 1981), 28 child-reported items (α's = .88 at T1, .90 at T2, .89 at T5) from the Revised Children's Manifest Anxiety Scale (RCMAS; Reynolds & Richmond, 1978), and 27 child-reported items (α's = .81 at T1, .83 at T2, .85 at T5) from the Children's Depression Inventory (CDI; Kovacs, 1981). Sample items for these measures are "Likes to be alone" and "You worried a lot of the time," and "I am sad once in a while", for the CBCL, RCMAS and CDI, respectively. Scores on the RCMAS are correlated with other measures of anxiety in children, including the Trait Anxiety score from the State-Trait Anxiety Scale for Children (e.g., Carey et al., 1994). Scores on the CDI have been shown to differentiate children who are clinically depressed from non-depressed psychiatric child patients (e.g., Kovacs, 1985), and scores on the CBCL have been shown to differentiate children referred for psychiatric services from non-referred children (Achenbach, 1991a). A composite score of internalizing problems was created by standardizing and then averaging the three measures. Self-esteem-Self-esteem scores at T1 and T5 were used; T2 scores were not used because the program did not affect self-esteem at T2. Youth completed the 6-item global self-esteem subscale of the Self-Perception Profile for Children (Harter, 1982; α's = .78 at T1, .86 at T5). A sample item is "Some kids like the kind of person they are." Scores on this measure have been negatively related to children's depressive symptoms (Renouf & Harter, 1990). Academic competence-Scores at T1 and T5 were used; T2 scores were not used because the program did not affect academic competence at T2. Mothers and children completed the 6-item academic competence subscale of the Coatsworth Competence Scale (Coatsworth & Sandler, 1993). Coefficient alphas were adequate (mother report α's = .91 at T1, .90 at T5; child report α's = .78 at T1, .81 at T5). Scores on this measure have been linked with other measures of competence and with mental health outcomes (Coatsworth & Sandler, 1993;Spaccarelli, Coatsworth, & Bowden, 1995). A sample item is "Your child had problems learning new subjects at school." Mother-and child-report scores were standardized and then composited by taking the mean. In addition, adolescents' cumulative unweighted grade point average (GPA) for all classes taken in high school was collected from school transcripts at T5. At T1, academic competence was assessed using only the Coatsworth measure. At T5, a composite was created by standardizing the scores for GPA and academic competence and averaging them. Educational and occupational outcomes-At T5, educational expectations were assessed with the question "When you think about your future, what is the highest level of education you expect to attain?" from the Future Expectations Scale (Linver, Barber, & Eccles, 1997). The five response options ranged from completing high school to attending post-college graduate or professional school. To assess job aspirations, youth were presented with a list of 28 occupations and asked "If you could have any job you wanted, what job would you like to have when you are 30 years old?" (Possible Jobs Scale; Tucker, Barber, & Eccles, 1997). Occupations were subsequently scored according to level of prestige, with higher scores reflecting more (highest prestigious jobs). --- Results --- Analytical Procedure Structural equation modeling (SEM) with Mplus software (Version 5.1 Muthén & Muthén, 1998-2007) was used to evaluate the program effects on educational expectations and job aspirations and to test the mediation models. Missing data were handled using full information maximum likelihood (FIML) estimation. FIML yields estimates that are less biased than the conventional listwise deletion or mean substitution in handling missing data (Collins, Schafer, & Kam, 2001;Schafer & Graham, 2002). Program effects on educational expectations and job aspirations were examined separately. Following the establishment of program effects on the two outcomes, mediational analyses were conducted to identify potential mediators of these effects. Because previous analyses demonstrated that youth who were at greater baseline risk for developing future adjustment problems benefited from the program more than those at lower risk (e.g., Dawson et al., 2004;Wolchik et al., 2000;2007), we first examined if the program x risk interaction effects on educational expectations and job aspirations were significant in accordance with Aiken and West's (1991) multiple regression procedure. A moderated effect was considered to occur if the interaction was significant, and the Johnson-Neyman procedure (Potthoff, 1964) was employed to probe the region in which the intervention and control groups differed significantly on the outcome variables (see Aiken & West, 1991). We then conducted mediated moderation analyses (Muller, Judd, & Yzerbyt, 2005;Preacher, Rucker, & Hayes, 2007), assessing whether the mediation process accounted for this moderation. If the mediated moderation effect was significant, we probed the simple mediation effect following the procedure outlined in Tein et al. (2004). Specifically, we examined whether the mediation effect was significant at different levels of the moderator (e.g., one standard deviation below [-1SD] and one standard deviation above [+1SD] the mean). This procedure does not artificially dichotomize the sample into high and low risk groups and thus provides greater power for examining the simple effect. The baseline risk index consists of the baseline variables that were the strongest predictors of adolescent adjustment outcomes in the LC group: externalizing problems and a composite of environmental stress measures that assessed the following divorce-related stressors, child-experienced negative events, interparental conflict, decreased contact with father, per capita income, and maternal distress (see Dawson-McClure et al., 2004 for a more detailed description of this index). Both three-wave longitudinal and two-wave half-longitudinal models (Cole & Maxwell, 2003) were employed to test mediation. In both approaches, the predictor was the program condition and the outcomes were educational expectations and job aspirations at 6-year follow-up. In the three-wave longitudinal models, the mediators were those for which positive program effects occurred at posttest: mother-child relationship quality, effective discipline, internalizing problems, and externalizing problems. In the half-longitudinal models, the mediators, which were measured concurrently with the outcomes, were those variables for which positive program effects occurred at the 6-year follow-up: mother-child relationship quality, self-esteem, internalizing problems, externalizing problems, and academic competence. Separate mediation models were first tested for each mediator variable and each outcome variable. When significant effects were found for more than one mediator, multi-mediator models, which included each mediator that was significant in the single mediator models, were tested to determine whether there was unique prediction of the mediator above and beyond the other mediators. In all models, the baseline measures of the mediators were controlled. Because GPA was not measured at pretest or posttest, T1 academic competence was used as the baseline proxy of the T5 academic competence/GPA composite. Variables measured at the same assessment point were permitted to correlate with one another. MacKinnon's (2008) guidelines for mediation were used in which mediation is established if the path from the independent variable to the mediator (a path) and the path from the mediator to the outcome controlling for the independent variable (b path) are significant. According to the simulation study by Fritz and MacKinnon (2008), this method provides a more robust test of mediation than Baron and Kenny's (1986) method that requires the path from the independent variable to the outcome without controlling for the mediator is also significant. In cases where the a and b paths were significant, the statistical significance of the mediation effect (a*b) was tested against the confidence interval, [CI: ab ± (significant critical value)*(SE ab )], where SE ab is the standard error using the PRODCLIN procedure (see Fritz and MacKinnon, 2008;MacKinnon, 2008). If zero is not contained within the 95% CI, it can be concluded that the mediated effect is significant. --- Preliminary Analyses A Box's M analysis, including all of the study variables, was conducted to determine whether the MP and MPCP conditions could be combined as they were in previous studies (Wolchik et al., 2007;Velez, Wolchik, Tein & Sandler, in press;Zhou et al., 2008). The Box's M analysis is considered a conservative omnibus test that assesses whether the variance and covariance matrices of two groups differ significantly (Winer, 1971). If Box's M is nonsignificant, it can be concluded the relations among the variables do not differ significantly across groups. The results showed that the variance/covariance matrices did not differ significantly (Box's M = 5.63; F(3) = 1.85, p = .14; χ 2 (3) = 5.54, p = .14). Thus, the MP and MPCP conditions were combined for the analyses. Dummy codes were created for the LC (0) and MP + MPCP (1) conditions. The diagnostic indices of leverage (Mahalanobis' distance), distance, and influence (DFFITS and Cook's Distance) were calculated to identify potential outliers or influential data points (Cook, 1977;Neter, Kutner, & Wasserman, 1989;Stevens 1984). These analyses revealed no outliers or influential data points; thus all cases were retained in the analyses. Descriptive statistics for all study variables are provided in Table 1, and the correlations among the study variables and potential covariates are presented in Table 2. The following variables were selected as potential covariates based on previous research indicating that they were significantly related to the mediator or outcome variables: child's age and gender, mother's and father's highest level of education, months since separation, and months since divorce. A path from the covariate to the outcome or the mediator was included in the SEMs that examined program effects or mediation effects if the zero-order correlation of the covariate with the outcome or the mediator was significant. If the path from the covariate to the mediator or the outcome was nonsignificant in the model, the covariate was dropped. As shown in Table 2, age was significantly correlated with T2 teacher-reported externalizing problems, such that younger children exhibited higher levels of externalizing problems. Gender was significantly correlated with T2 and T5 teacher-reported externalizing problems, such that boys scored higher than girls. Gender was also significantly correlated with T5 mother-child relationship quality, T5 educational expectations and T5 job aspirations, with males having lower scores than females on these measures. Mothers' level of education was significantly positively correlated with T2 effective discipline, T5 academic competence, and T5 educational expectations. Fathers' level of education was significantly positively correlated with T2 mother/child-reported internalizing problems, T5 academic competence, T5 teacher-reported externalizing problems, T5 educational expectations and T5 job aspirations. Fathers' level of education was significantly negatively correlated with T2 mother/child-reported externalizing problems. Time since divorce was significantly positively correlated with T5 self-esteem and T5 job aspirations; adolescents whose parents had been divorced longer had higher self-esteem and higher job aspirations. --- Analyses of Program Effects In the model in which educational expectations was the outcome, program, risk, and the program x risk interaction were included as predictors, and child gender and mother's and father's highest level of education were included as covariates based on the results of the correlational analyses. Mothers' level of education became nonsignificant and was thus dropped from the model. Although the program main effect was nonsignificant (β = .05, p = .41), the program x risk interaction effect was significant (β = .39, p < .01). The Johnson-Neyman procedure (Aiken & West, 1991) revealed that for youth who had risk scores beyond 1.14 SD above the mean, the intervention and control conditions differed significantly, such that youth in the intervention had higher expectations than those in the control condition. Approximately 12% of the sample was in this region. In the model in which job aspirations was the outcome, program, risk, and the program x risk interaction were included as predictors, and child gender, time since divorce, and father's level of education were included as covariates based on the results of the correlational analyses. Similar to the findings of educational expectations, the program main effect was nonsignificant (β = .12, p = .07) and the path from program x risk to job aspirations was significant (β = .28, p < .05). The Johnson-Neyman procedure revealed that for youth who had risk scores beyond .56 SD above the mean, the intervention and control conditions differed significantly, such that the youth in the intervention had higher aspirations than those in the control condition. Approximately 26% of youth in the sample were in this region. --- Mediation Models Because the program effects on the two outcomes were moderated by the baseline risk, we conduced mediated moderation analyses, which included program x risk interactions to the mediator (a' path) and the outcome (c' path) in the SEM. Figure 1 illustrates a theoretical mediation model. 1 illustrates a theoretical mediation model. Table 3 shows the results of the mediation models in which the program effects on T5 measures of educational expectations and job aspirations were mediated by the prospective effect of the five potential mediators measured at T2: mother-child relationship quality, effective discipline, mother/child-reported internalizing problems, mother/child-reported externalizing problems, and teacher-reported externalizing problems. As shown, all the mediation models fit the data adequately. The program had significant effects (a path) on all of the mediators except teacher-reported externalizing problems. Risk did not moderate any of the program effects on the mediators (a' path). After controlling for the program effect, none of the mediators had significant effects on educational expectations or job aspirations (b path). The direct effects from the program x risk interaction to the two outcomes remained significant (c' path). Because none of the models had significant a (or a') and b paths, the mediated effects were not assessed for significance. 4 shows the results of the mediation models in which the program effects on educational expectations and job aspirations were mediated by the concurrent effects of the six T5 potential mediators: mother-child relationship quality, mother/child-reported internalizing problems, mother/child-reported externalizing problems, teacher-reported externalizing problems, academic competence, and self-esteem. All of the mediation models fit the data adequately. There were significant program x risk interaction effects (a' path) on all of the mediators beyond the significant main effects (a path) on mother/child-reported and teacher reported externalizing problems. With the exception of teacher-reported externalizing problems, all the mediators had a significant effect (b path) on educational expectations. Only mother/child-reported externalizing problems and academic competence had a significant effect (b path) on job aspirations. --- Three-wave longitudinal models-Figure --- Two-wave half-longitudinal models-Table For those models that had both significant a' (indicating that the program effects on the mediators were moderated by risk) and b paths, simple mediation effects were tested. The findings of the simple mediation effects indicated that for youth with high, but not low risk, significant mediation effects were found for mother-child relationship quality (95% CI: . 0068, .1022), self-esteem (95% CI: .0361, .1740), mother/child-reported externalizing problems (95% CI: -.2666, -.0633), mother/child-reported internalizing problems (95% CI: .0073, .1174), and academic competence (95% CI: .0522, .2324) on educational expectations. Significant mediation effects also occurred for academic competence (95% CI: .0353, .1832) and mother/child-reported externalizing problems (95% CI: .0107, .1927) on job aspirations for high risk youth. To assess the unique mediation effect of each mediator, mother-child relationship quality, self-esteem, mother/child-reported externalizing problems, mother/child-reported internalizing problems, and academic competence were entered simultaneously into the SEM predicting educational expectations. The fit of the model was satisfactory: χ 2 (35) = 44.63, p = .13, RMSEA = .03, SRMR = .03, CFI = .98. All the a' paths remained significant: program x risk to mother-child relationship quality, β = .26, p = .03; to self-esteem, β = .53, p = .00; to mother/child-reported externalizing problems, β = -.54, p = .00; to mother/childreported internalizing problems, β = -.50, p = .00; to academic competence, β = .34, p = .01. The b paths from academic competence (β = .41, p = .00) and from self-esteem (β = .19, p = .02) to educational expectations were significant. The paths from the other three mediators were nonsignificant. Probing of the simple mediation effects indicated that academic competence (95% CI: .0421, .2088) and self-esteem (95% CI: .0129, .1450) independently accounted for the effects of the program on educational expectations for the high-risk youth. Academic competence and mother/child-reported externalizing problems were entered simultaneously into the SEM predicting job aspirations to assess for unique mediation effects. The fit of the model was satisfactory: χ 2 (9) = 10.29, p = .33, RMSEA = .02, SRMR = .02, CFI = .99. Both a' paths remained significant: program x risk to academic competence (β = .33, p = .01); to externalizing problems (β = -.53, p = .00). The b path from academic competence (β = .27, p = .00) to job aspirations was significant; the path from externalizing problems was nonsignificant. Probing of the simple mediation effects indicated that academic competence independently accounted for the program effects on job aspirations (95% CI: .0223, .1537) for the high-risk youth. --- Discussion This study examined whether a parenting-focused intervention for divorced families affected youth's educational expectations and occupational aspirations six years following participation and tested whether several parenting and youth variables mediated the program effects. The results indicated that, for adolescents who were at high initial risk for developing later problems, those in the program had both higher expectations for their educational attainment and higher job aspirations compared to their counterparts in the control condition. None of the posttest variables examined mediated the effects of the program on educational expectations and occupational aspirations. However, mother-child relationship quality as well as youth externalizing and internalizing problems, self-esteem and academic competence at the six-year follow-up mediated the effects of the program on high-risk adolescents' educational expectations. Also, measures of academic competence and externalizing problems at the six-year follow-up mediated the effects of the program on job aspirations for high-risk adolescents. When the significant mediators were entered simultaneously into the models predicting educational expectations and job aspirations to assess for unique mediated effects, only academic competence remained a significant mediator of program effects on job aspirations. Both self-esteem and academic competence uniquely mediated the effects of the program on educational expectations. This is the first study to examine the effects of a preventive intervention on the educational goals and occupational aspirations of youth in divorced families. The findings extend the results of previous studies, which have shown that prevention programs improved risky behaviors, substance use and mental health outcomes, and academic performance of youth in divorced families (DeGarmo et al., 2004;Pedro-Carroll & Alpert-Gillis, 1997;Pedro-Carroll, Sutton, & Wyman, 1999;Wolchik et al., 2000;2002;2007), to include a domain of functioning that has significant consequences for adult educational and occupational success (Cheeseman Day & Newburger, 2002;Harackiewicz et al., 2002). In the context of the consistent finding that youth from divorced families exhibit lower achievement in the domains of work and education (e.g., Biblarz & Gottainer, 2000;Hetherington, 1999) and experience more economic difficulties (Caspi et al., 1998), these findings have important implications for reducing the public health burden of divorce. The finding that program effects occurred for youth who were at high risk, but not low risk, of developing mental health and other problems is consistent with a growing body of research on the effects of prevention programs (e.g., Stice, Shaw, Bohon, Marti, & Rohde, 2009;Stoolmiller, Eddy, & Reid, 2000;Wolchik et al., 2000;2007). Screening for level of risk may be an effective way to increase the likelihood of benefits of interventions for divorced families (Dawson-McClure et al., 2004). It is important to note that support for meditational relations only occurred in the models in which the mediators and outcomes were measured concurrently. Thus, the significant pathways must be viewed as providing preliminary support for meditational relations (Kraemer, Yesavage, Taylor & Kupfer, 2000). Prospective mediational effects were not found for any of the posttest measures. It is possible that mediational pathways would have been detected if the time lag between the posttest and follow-up assessments had been shorter than six years. It is also possible that variables that were not assessed at post-test, such as monitoring and supervising of school-related activities, school performance, and completion of homework, may be related to occupational and educational goals in mid-tolate adolescence. Several dyadic and youth variables assessed at the six-year follow-up mediated the effect of the NBP on the educational expectations of high-risk youth. The mediational effect for mother-child relationship quality is consistent with previous work with this data set that has shown mediational effects of this variable for internalizing and externalizing problems and mental disorder symptom count (Zhou et al., 2008). Supportive parenting may provide adolescents with the confidence and self-worth necessary to develop ambitious long-term educational goals. The mediational relations between academic competence and educational expectations are consistent with previous studies linking academic achievement in middle and high school with later educational outcomes (Huurre, Aro, Rahkonen, & Komulainen, 2006;Strenze, 2007). These findings suggest that successful academic experiences may lead youth to aspire to achieve ambitious goals later in life. The mediational pathway for selfesteem and adolescents' internalizing and externalizing problems are consistent with research showing associations between self-esteem (Ahmavaara & Houston, 2000;Emmanuelle, 2009), internalizing problems (McLeod & Kaiser, 2004;Rapport et al., 2001), externalizing problems (Asendorpf, Denissen, and van Aken, 2008;Masten et al., 2005) and academic outcomes. It is possible that high self-esteem affects persistence in mastering academic tasks, which then affect educational goals. Similarly, aggressive or withdrawn behavior may prevent adolescents from learning effectively in school and inhibit positive relationships with teachers (Masten et al., 2005). These processes may affect academic performance, which then influences educational goals. It is notable that the effect of externalizing problems was obtained for mother/child-reported but not teacher-reported externalizing problems. One explanation for the difference in findings across reporters is that the high school teachers observed the adolescents for only one class period per day, which may have restricted the range of behaviors they could observe. Academic competence and mother/child-reported externalizing problems assessed at the sixyear follow-up mediated the effects of the NBP on high-risk adolescents' job aspirations. These findings are consistent with research linking academic success with later career success and socioeconomic attainment (Strenze, 2007) and suggest that career goals may be one mechanism through which school grades in adolescence contribute to later occupational attainment. In the multiple mediator models, only academic competence uniquely mediated program effects on educational expectations and job aspirations for high-risk youth. The lack of the contribution of the other variables may be due in part to the small sample size. A larger sample may be required to detect smaller mediation effects when multiple mediators are tested. The current study has limitations that can inform future research. First, given that all significant findings were found for the models where the mediators and outcomes were measured concurrently, it is not possible to draw causal inferences (Cole & Maxwell, 2003). It is possible that educational and occupational goals affect the hypothesized mediating variables or that there are reciprocal relations between educational and occupational goals and the proposed mediators. Future research that includes assessments in which the potential mediators have temporal precedence but are more proximal to the outcomes than those in the current study are needed to identify causal relations. Second, the sample was almost exclusively Caucasian and middle-class. Studying the effects of this program and others for youth from divorced families on educational and occupational goals using samples that are diverse in terms of ethnicity and socioeconomic background is an important future direction. --- Implications for Theory and Intervention The current study demonstrated that a prevention program for divorced families had longitudinal effects on the educational expectations and occupational aspirations of high-risk adolescents, and that these program effects were partially mediated through programinduced effects on academic achievement, self-esteem, externalizing problems, internalizing problems, and the quality of the mother-adolescent relationship. The finding of long-term effects of this program on educational and occupational goals highlights the importance of including follow-up assessments to identify both enduring effects and outcomes that are specific to developmental stages that occur after program participation. There is considerable evidence suggesting that the benefits of preventive interventions continue to unfold over time (DeGarmo et al., 2004;Gillham, Reivich, Jaycox, & Seligman, 1995;Wolchik et al., 2007). Further, the findings of this study underscore the need to study the effects of prevention programs on educational and occupational goals, as these outcomes have been previously linked to performance and attainment outcomes in these domains (Harackiewicz et al., 2000;Judge et al., 1995). To our knowledge, the current study represents the first test of the effects of a preventive intervention on educational and occupational goals and aspirations, and it is also one of the few studies linking these outcomes with youth self-esteem, internalizing and externalizing problems, and the motherchild relationship. --- Summary Children from divorced families are at an increased risk for decreased academic and occupational achievement, relative to their peers from non-divorced families (Biblarz & Gottainer, 2000;Caspi et al., 1998;Hetherington, 1999). The findings from the current study indicated that the educational and occupational goals of high-risk adolescents from divorced families were enhanced through a preventive intervention that focused on improving parenting skills. In addition, these findings suggest that intervention-induced effects on several intrapersonal and interpersonal risk and protective factors, such as self-esteem, academic competence, externalizing problems, internalizing problems, and mother-child relationship quality, were associated with improvements in high-risk adolescents' educational expectations and occupational aspirations. These results suggest that the public health burden due to divorce may be reduced through the widespread implementation of parenting-focused preventive interventions for this at-risk population

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Ivagining worlds: on Ursula K. Le Guin, social science-fiction, and altertopias

Ethnography-based Anthropology and Science Fiction can engage in a productive dialogue since both address what is proposed as "altertopias". Utopias, dystopias, and cultural alterity share the possibility of imagining social and cultural organizations different from both those of the authors and those of the readers. These imaginations are intrinsically creative/artistic and political at the same time, and they critique power structures, especially when approached through a feminist stance. Inspired by the literary work of Ursula Le Guin, the article takes this further by experimenting with the inclusion of a fictional piece of "Social science fiction" that itself plays on Le Guin's themes.

Ethnography-based Anthropology and science-fiction are commonly regarded as separate genres of intellectual and literary production. The former is seen as scientific and the latter as artistic. Anthropology deals with actually existing forms of social life and social worlds whereas science fiction deals with "fantasy". Both a positivistic stance on science (especially social science and the humanities) and a romantic stance on art (especially literature) have been profusely questioned and challenged since the post-modern turn in both social sciences and the arts. This article aims at illustrating the possible porosity between Ethnography-based Anthropology and the literary genre of science fiction with a focus on sex, gender, and sexuality and resorting to a feminist and queer perspective. Anthropology aims at making the exotic familiar to make the familiar exotic, as the well-known saying goes. Science-fiction aims at imagining worlds that do not exist but does so based on the historical, social, and cultural experience of both author and readers. That experience includes the diversity of human social constructs as recorded in the ethnographic archive and in anthropological analysis. In this sense, can one say that they both work in a utopian mode? By this I mean the utopias and dystopias proper -those of science fiction -and the altertopias of Ethnography. By altertopias I do not mean that the ethnographic record relates to a non-existing reality (it does not, of course, since it reports on the actual life of existing human groups), but rather that the world thus reported is alien to the reader, albeit not so to both anthropologist and the human group with whom the ethnography was produced. In both genres and in both forms of intellectual production, we are faced with alternative worlds. The portrayal of those worlds itself opens a space for a critique of the reader's common-sense reality. Feminist and queer imaginations, specifically, work for changes in social relations and identities that necessarily engage in altertopian endeavors, since they are in opposition to actually existing heteronormativity, and both Anthropology and sciencefiction are of enormous potential as fields of inquiry and imagination with a politically transformative potential. Anthropologists can immediately think of Haraway's (2016) speculative and science-fiction inspired work on the future, or the ethnographically based theorization of Marilyn Strathern (2001) and her proposal to overcome the Western template of understanding gender as based on the sexualized concepts of "men" and "women". Their political effect can not be underestimated: one imagines the future as an overcoming of present challenges, the other presents an alternative cultural construct that chellenges our certainties. In this sense, politics requires imagination: "we could have been, or we could be like them" (the ethnographic other, or alter); "we could have been or become like them" (the other, or alter, in science-fiction). --- * The literary work of Ursula K. Le Guin (1929Guin ( -2018) ) has been the subject of extensive analytical and critical work, the review of which is outside the scope of this article. I would rather focus -based on my anthropological experience and on my predilection for Le Guin's oeuvre -on aspects of her approach to gender and sexuality, as well as political-economic utopias and dystopias. Specifically, I have been paying attention in her work to three aspects. Firstly, how it shows that our gender and political-economic orders can be seen as dystopian, including those utopian political projects that were implemented or experimented with; Secondly, how her work calls for utopian models that are small-scale, ecological, and egalitarian -and very much inspired in the ethnographic archives but without conceding to pre-modern nostalgia; Thirdly, how productive the porosity between Anthropology and science-fiction can be for our discipline's contribution to the imagination of a feminist-and queer-inspired world, as well as a critique of our present situation. Ursula K. Le Guin's science-fiction oeuvre deals, among others, with two fundamental topics of concern here: gender and sexuality, on the one hand; and political-economic utopia and dystopia, on the other. Can her feminist approach to the subject and subjects of her stories be seen as a form of queer imagination avant la lettre? Also, does her approach to anarchist utopias, counterpointed with capitalist and anthropocenic dystopias, avoid the simplistic dichotomies of the political debates of the pre-Fall-of-the-Berlin-wall era? From a biographical point of view, Le Guin's upbringing in her father's (Alfred Kroeber) ethnographic field sites and museum institution has -as she has admittedinspired her work. For this purpose, and to highlight the aspects mentioned in the previous paragraph, I will focus on her novels The left hand of darkness (1969), The word for world is forest (1972), The dispossessed (1974), Always coming home (1985), and, generally, in what critics have called the Hainish Cycle in her work. My reading of Le Guin has been centered, throughout the years, on the abovementioned cycle of novels and stories. The cycle was not intended as such by Le Guin, it was not "a series" that she had planned. It is rather an expost connection, rather than collection, of novels and short stories set in several different imaginary planets. These planets' populations were the result of colonization by the original humans from planet Hain. Both Hainish genetic experimentation and local evolutionary processes led to different sub-species of humans and different cultural complexes in different planets. Furthermore, in many novels we get to know a planet through the narrative of a Mobile, an ethnographer of sorts, who is supposed to report on the population, without interfering in their lives and history, in order to help the Ecumene (the cooperative, anarchy-like federation of planets colonized by Hain) decide when and if to establish contact and provide technology (mainly communication technology that allows for cooperation and exchange of knowledge). * Baker-Cristales (2012) uses the wonderful expression "social science fiction" when referring to Le Guin's ethnographic sensibility. She notes how "ethnographic writing (is) neither fiction nor science" (Baker-Cristales, 2012, p. 15) and resorts to Jameson's (2005) notion of how "the belief that storytelling and imagination are entirely distinct projects from science and truth-telling is a product of a particular, very circumscribed, social-historical system -modern capitalism" (Baker-Cristales, 2012, p. 17). As Jameson (2005, p. 286) has conveyed, rather than predicting, science fiction's purpose is to "defamiliarize and restructure our experience of our own present, and to do so in specific ways distinct from all other forms of defamiliarization". Baker-Cristales notes how often the protagonists of Le Guin's novels are anthropologists by another name. "By using ethnography as a textual model for fiction, Le Guin aims to transcend some of the limitations of fiction -the end of the story" (Baker-Cristales, 2012, p. 19). In the words of Fredric Jameson (1975, p. 4), "one of the most significant potentialities of Science Fiction as a form is precisely this capacity to provide something like an experimental variation on our own empirical universe". This experimentation is usually codified as analogy and extrapolation (Jameson, 1975). It is complemented by world reduction, a taking away of certain characteristics, whether technological, institutional, or cultural, of our habitual cultural world (Modern, Western, Capitalist…), thus setting the stage for speculating the outcome of that removal, a sort of "take away this variable and see what happens". In The left hand of darkness, Le Guin (1969) describes a world without gender. People in planet Gethen -who are human, as everyone in the Hainish Cycle planets, albeit modified by local evolution -are hermaphrodytes1 and do not experience permanent libido or sex drive. Like in many species we know, they have estrus, or cycles of sexual availability, called kemmer. When on kemmer, if two persons are attracted to each other one of them will develop secondary female characteristics and the other male characteristics. There is no way to tell which will be which and a person can "become" both male and female in different kemmer cycles in their lifetime. Jameson (1975, p. 7-8) also commented on the Gethen: Rather than stand in favor of a wider tolerance for all kinds of sexual behavior, it seems more appropriate to insist […] on the feminist dimension of her novel, and on its demystification of the sex roles themselves. The basic point about Gethenian sexuality is that the sex role does not color everything else in life, as is the case with us, but is rather contained and defused, reduced to that brief period of the monthly cycle when, as with our [non-human] animal species, the Gethenian are in "heat" or "kemmer". So, instead of eliminating sex, Gethenian biology eliminates sexual repression, according to Jameson (1975, p. 8): For if Le Guin's Gethen does not do away with sex, it may be suggested that it does away with everything that is problematic about it […] The dream of some scarcely imaginable freedom from sex, indeed, is a very ancient human fantasy, almost as powerful in its own way as the outright sexual wish-fulfillments themselves. Le Guin connects Gethenian absence of a permanent sex drive and the absence of gender to the wider theme of societal organization and conflict: there being no gender oppression or violence, Gethen is a society uninterested in growth and power, and does not therefore see the point in war between either factions or nations. The theme of gender and sexuality, and its connection to wider societal predispositions, is prevalent in Le Guin's works -from societies where women are in power, to those where there is no distinction between sexual orientations. In The dispossessed (Le Guin, 1974), the anarchist organization of the planet Anarres is not depicted only on the grounds of communal possession, central organization of the distribution of labor and resources, or on the ecological care and avoidance of disproportionate growth or accumulation. It is also characterized by what could be called as "free love" and the absence of structured marriage, cohabitation, or marriage alliances -as opposed to its nemesis planet, Urras (and also its origin, Anarres being a colony settled by radicals that have fled from Urras), where capitalism is full-fledged as well as gender and sexual structures very similar to our contemporary patriarchal ones. Is Anarres a utopia like so many others in mainstream, run of the mill science-fiction? Not quite. Le Guin seems to want to say that it is an experiment, an on-going one, where hesitation and doubt have a place. That is what the main character, Shevek, embodies, when he decides to play the role of the scientific emissary to Urras, where he is both attracted to and disgusted by the niceties of an affluent society, while back home in Anarres he is also ambivalent about the political choices and, most of all, the unavoidable fact that even in progressive utopias a new hegemony tends to be established, social pressure to conformity occurring as well. The above-mentioned reference, by Jameson, to the plot strategy of "world reduction" (let's remove capitalism, the nation state, industrial production, cars, and airplanes, and see what life could be like) is applicable to Le Guin. She does something like this in Always coming home, a novel that is not part of the Hainish Cycle. It is an invented ethnography. It follows the style of early ethnographic efforts and is reminiscent of Malinowski's writing template. However, it is also an archaeology of the future, not a rendition of the bast or of a contemporary culturally different society. It depicts California in a future when people have gone back (but, as certainly Le Guin would say, forward) to indigenous ways of living, especially in what regards keeping small-scale, ecologically balanced societies, with close social ties based on communal modes of existence. Indigenous but of today -and tomorrow. This neo-tribal society exists while an Internet-like technology is available, kept by automated entities that do not interfere with human life but simply collect, organize, and provide information. As Baker-Cristales (2012, p. 24) The connection between Le Guin's concern with gender and sex, on the one hand, and her concern with apparently utopian modes of social, economic, and political organization, on the other, was also observed by Jameson (1975, p. 12-13): The existence of modern technology in the midst of an essentially feudal order [in The left hand of darkness] […] It becomes difficult to escape the conclusion that this attempt to rethink Western history without capitalism is of a piece, structurally and in its general spirit, with the attempt to imagine human biology without desire… Donna Haraway (2014) also refers to the connection between Always coming home and the problematization of the Anthropocene (actually, the Chthulucene, in her formulation), when she acknowledges her inspiration on Le Guin -together with anthropologists Marilyn Strathern and Anna Tsingand how she helped her realize that utopias shouldn't be big systems and signifiers, but actual small-scale human attempts at relation and connection with other species and the world. Haraway (2016) is the leading contemporary 2 See Trouillot (2003, p. 19). Trouillot's work can be a source of critique of homologies between Western utopian thought and narratives of the cultural difference of colonized peoples. Le Guin's social science fiction avoids the trap of both the noble savage and the savage primitive. author acknowledging the influence of (and dialogue with) Le Guin, when she writes that "Le Guin's carrier bag theory of narrative comes to the rescue, along with biologist Deborah Gordon's theories about ant interactions and colony behavior, to elaborate the possibilities of ecological evolutionary developmental biology and nonhierarchical systems theories for shaping the best stories. Science fiction and science fact cohabit happily in this tale" (Haraway, 2016, p. 7, my italics). Haraway is referring also to stories that deal with non-human characters, but her assessment would certainly aply to stories starring humans in the Hainish cycle. What is at stake is the radical change of perspective. Le Guin (1989, p. 97-98) herself wrote inspiringly on this: Copernicus told us that the Earth was not the center. Darwin told us that man is not the center. If we listened to the anthropologists, we might hear them telling us, with appropriate indirectness, that the White West is not the center. The center of the world is a bluff on the Klamath River, a rock in Mecca, a hole in the ground in Greece, nowhere, its circumference everywhere. Perhaps the utopist should heed this unsettling news at last. Perhaps the utopist would do well to lose the plan, throw away the map, get off the motorcycle, put on a very strangelooking hat, bark sharply three times, and trot off looking thin, yellow, and dingy across the desert and up into the digger pines. In Returns: becoming indigenous in the twenty-first century, James Clifford (2013) revisits the well-known story (among anthropologists) of Ishi, and he does so from a contemporary perspective, one that does not see Native American realities, especially in California, as something of the past, as exterminated, but rather as growing and expanding albeit in new ways. He retells the story of Ishi, popularized as "the last wild man", who lived part of his life in Alfred Kroeber's (Le Guin's father) museum at Berkeley. He also tells the story of Theodora Kroeber's (Le Guin's mother) popularization of Ishi's story and symbolism in her books, especially her children's book 3 . He goes on to narrate the story of Orin Starn's investigation of Ishi's brain at the Smithsonian Institution and the Indian efforts, in California, for repatriation of the remains, as well as the polemic at Berkeley over the need or not for apologizing for Kroeber's and the university's actions in the past (a campaign championed by Nancy Scheper-Hughes, and countered by one of Le Guin's brothers, literary scholar Karl Kroeber). And, of course, he cannot avoid mentioning Ursula. Why and how? Because in a way he establishes an opposition and contrast between Le Guin's work, especially the abovementioned Always coming home (Le Guin, 1985), and "Kroeber's purified pre-contact reconstructions of California" (Clifford, 2013, p. 106). In a sub-chapter titled "Utopia", he says how Ursula's work "draws on folklore, popular culture, Taoism, post-sixties feminism and environmentalism" (Clifford, 2013, p. 111) and how much these are themes that are central to Ishi's world: --- * For many years I used Le Guin's (1972) novel The word for world is forest in Introductory Anthropology classes. It helped, through the guise of science fiction, to convey the sense of doing ethnography as a process of cooperative knowledge building between anthropologist and the social groups (through specific persons) -and how much ethnography-based knowledge is the outcome of processes of porosity and juxtaposition between scientific, literary, interactional, and interpersonal processes that result in a new type of knowledge that is quintessentially human(istic). The altertopia of the context of The word for world is forest mimics the process of ethnographic discovery, as well as depicts the conflicts of power resulting from colonial and capitalist encroachment in many communities. It does so through the guise of fiction, something that is more effective on young students than descriptions of our "real" History (always prone to trigger emotional or ideological reactions that hinder learning). Clifford (2013, p. 119) focuses precisely on this book: In Le Guin's parable […] anthropological humanism emerges as both essential and impotent in situations of colonial/anti-colonial antagonism. Lyubov [the main character, an anthropologist of sorts] is unable to reconcile inter-personal loyalty, political commitment, and scientific comprehension: he will not emerge unscathed with his intercultural understanding. The word for world is forest depicts capitalist and colonialist exploitation of native resources (in a planet of the Ecumene, the loose federation centered in Hain), together with extreme racism and extermination of the "savages", whose rich culture -and, indeed, alternative (altertopian) social and ecological organization -is dismissed 4 . It is at the very other end of the line connecting Kroeber's anthropology and the Native American experience of Kroeber's time, on the one hand, and today's Native American situation as well as contemporary utopian visions on the verge of the Anthropocene, on the other. Then, in Kroeber's time: the "last wild man", the unavoidable result of the triumph of civilization, something to feel sorry about but unstoppable for supposedly good reasons ("evolution", "civilization", the colonial/capitalist utopia…), and anthropologists whose mission was to salvage and register that which was about to disappear. To salvage the savage, so to speak. Now: the renaissance of Native American identities, with casinos and local and state politics, performative arts, comedy, self-representations, newly invented or consolidated tribal entities, mixed and urban identifications, etc., and anthropologists who consider the difficulties of cross-cultural dialogue and believe not only in constant, ongoing mixture, cultural reinvention and in decolonizing knowledge, but also in the unavoidable doubts and conflicts that utopias and civilizational projects entail -as does Le Guin. As Clifford (2013, p. 121) says, poetically: "Ishi in a loincloth, Ishi in work clothes, Ishi with feathers, Ishi in a suit and tie". Becoming indigenous after colonization (Clifford's expression) is, after all, what we can find in Always coming home. In her theoretical essay inspired by that novel, "A non-Euclidian view of California as a cold place to be", Le Guin (1989, p. 85, my italics) says: I am not proposing a return to the Stone Age. My intent is not reactionary, nor even conservative, but simply subversive. It seems that the utopian imagination is trapped, like capitalism and industrialism and the human population, in a one-way future consisting only of growth. All I am trying to do is figure out how to put a pig on the tracks. --- And in the same essay: Utopia has been Euclidian, it has been European, and it has been masculine. I am trying to suggest, in an evasive, distrustful, untrustworthy fashion, and as obscurely as I can, that our final loss of faith in that radiant sandcastle may enable our eyes to adjust to a dimmer light and in it perceive another kind of utopia […] It may look very like some kind of place Coyote5 made after having a conversation with his own dung. […] [A yin utopia] would be dark, wet, obscure, weak, yielding, passive, participatory, circular, cyclical, peaceful, nurturant, retreating, contracting and cold. (Le Guin, 1989, p. 88-90). --- * Maybe the trigger for this article was my difficulty in imagining the bodies of Gethen people. That is how "imaginative" became ivaginative, for in my efforts to picture Gethenians I always ended up picturing a vagina, certainly because it is an altertopian organ for my male body. It is important to distinguish my use of the differently spelled "ivagination", which is mostly playful, from the philosophical concept of "invagination". For Derrida (1980), invagination describes narratives that fold upon themselves. It is an aspect of "différance", opening the "inside" to the "other" and denying a stable identity to both. But I should be more accurate: not just the vagina. A clitoris will engorge exponentially in the "male" person during kemmer, and the vagina will widen significantly in the "female". And both gonads -testicles and ovaries -reside inside both persons. As does the uterus. One thing becomes obvious when the picture turns clearer: the gestational potential that resides in the uterus is in both per-sons. They are, in "our" sense, in our intrinsically biologically gendered world view, both women, in the sense that they are both potential gestating humans. Would I dare say that Le Guin was wrong, that Gethenians are all women? And that the presence of gender is tantamount to the presence of the masculine? Its absence would be general, human femininity, humanity as feminine. What, in my reading, is common to all Gethenians is the uterus. The Gethenian theme can thus be seen not just as a matter of gender balance, or gender oscillation, or gender interchangeability, or any variation thereof, but as referring to gender itself as a temporary phenomenon beyond being human. That could be seen as Queer avant la lettre -before queer became, in common parlance, a rather flat synonym for individual choice and performativity. Social Science Fiction and the Ethnographic mode seem to go hand in hand, instead of being at odds. Le Guin's novels, like all good science fiction, succeed in being internally consistent and logical. Science-fiction is not mere fantasy, for things in it must make sense according to its own established premises. In Social Science Fiction one must be even more careful because the material upon which the fictional work is done is human experience, relationality and sociality, and it needs to make sense to us, readers of the here and now. And it always does, at least with Le Guin, because the worlds she imagines are the worlds that we are constantly imagining in the "what ifs?" that we pose resorting to the materials at hand -bodies, social constraints, institutions, political projects, "nature", possible ontologies…. The ethnographic mode is one of creating intelligibility, through defamiliarization and refamiliarization, only achievable because the material used is common to interpreted and interpreter. In a world where the effects of colonialism-cum-capitalism have created new indigeneities; in a world where modern utopias seem to have become more disillusions than illusions; in a world now marked by all that the neologism "Anthropocene" encapsulates; in this world, Le Guin's invented knowledge of other worlds, and the anthropologists' knowledge of worlds created by others, provide materials and imaginative designs for altertopias. If Le Guin's father, Alfred Kroeber, was "salvaging the savage", Kroeber's daughter, Le Guin, provides us a glimpse of what it can be to "savage the salvage". The poetic notation of that change would be the replacement of the masculine m of imagination by the feminine v in ivagination -not an "image" but a life-giver, a genital. 6 Le Guin (2017, p. 1035) herself wrote thus about her Gethenian experiment: I was not reccomending the Gethenian sexual setup: I was using it. It was a heuristic device, a though-experiment. Physicists often do thought-experiments. Einstein shoots a light ray through a moving elevator; Schrodinger puts a cat in a box. There is no elevator, no cat, no box. The experiment is performed, the question is asked, in the mind. Einstein's elevator, Schrodinger's cat, my Gethenians, are simply a way of thinking. Following her inspiration, and in order to take seriously my approach to the porosity between science-fiction and Anthropology, what follows is my own work of fiction. It is clearly inspired in the Gethenian theme -in fact, it can be understood as a "take" on The left hand of darkness. It was meant to be passed on to students of gender and sexuality as part of a pedagogical sequence consisting of: a) the presentation of culturally diverse gender orders and regimes (Connell, 1987); b) their exposure to Le Guin's fiction (not just The left hand of darkness, but also A fisherman of the inland sea 7 ); c) my own fiction, as a way of putting together the possibility to imagine and the conventional and systematic nature of social organization that can be described by anthropologists with internal coherence. Fiction meets Anthropology in Social Science Fiction in the process of ivagining worlds. * 6 As mentioned before I have been reading mostly Le Guin's novels from the so-called Hainish Cycle. I have not dealt with her vast work on the fantasy genre, the Earthsea series. But as I was writing this essay, I was reading her early work, before both series. It is based on Orsinia, an imaginary Mitteleuropa country and the action takes place in the period of liberal and nationalist revolutions, namely against the Austrian Empire. It is very curious to see Le Guin's fascination with a specific historical past and geographical location, especially one where and when "utopias" thrived -nationalism, socialism, zionism, communism, utopian socialism -that today have clearly gone awry. --- Evolution From the notes of Eva g Sirdi, written approximately 150 years ago in the margins of a copy of the "Holy Ala'm" and discovered in the region of the Great Lakes of Northern Barbaria, selected and transcribed by Bei ag Arik, Doctor in Human Evolution by the University of Golmak. "It was the morning of my return from my second expedition and once more I was arriving empty handed. Seven years before, at the end of my first expedition, Ad had been waiting for me with an understanding smile. Ad had received my letter, sent by commercial ship, in which I told my frustration for not having found what I was looking for. Ad's smile had then been also one of encouragement: 'Do not worry, there will be a next time and, who knows, you'll then succeed'. Seven years and one more letter full of disappointment later, how would it go? One can take one, or two, or maybe even three consecutive disappointments. You take a deep breath and get back up on your feet again. But can the person you share your life with see the other fail time and time again? Would the smile be understanding and encouraging once more?" "Like seven years before, you could hardly see the harbor through the mist. The journey to the Northern Hemisphere must be done in the right time of the year, to take advantage of the favorable ocean currents and avoid the harsh climate. Consequently, the return trip always took place in the Southern Fall months, a season of thick fogs, penetrating humidity, and a feeble, pale light, as if filtered by layers of gauze. The contours of harbor and town took a while to focus. First you would see the fickle light of the whale-oil lanterns held by relatives waiting for you. Some higher, some lower, probably held respectively by adults and children. Slowly, the dark shapes of the Araken's palace up in the Hill became perceptible, together with the sails of other ships. But even before the bodies of the cherished ones became visible, you could hear a band playing a welcoming saruetz." "Expeditions to the Northern hemisphere were always State events. An expedition was an expensive endeavor and the satisfaction of curiosity, or the search for knowledge (what, so the saying goes, the ancients called Science) were the State's last priority. The Araken, our State council, wanted us to find precious metals more than anything. In that regard the expedition had gone quite well: two months of slow and painful sailing to the North; the good fortune of having found a potentate of Northern Barbarians enjoying a period of peace with their neighbors and therefore willing to negotiate with us; the childish naiveté with which those barbarians accepted our gifts of worthless monkey skins -apparently so important for their ritual bartering in prestige competitions between their chiefs -in Exchange for metals whose value they were far from even imagining; the sumptuous reception that was offered us; and, at last, a one and a half month return trip with exceptionally calm seas." "The crew threw the thick and heavy ropes. The fog insisted on hiding the contours of the bodies waiting for us. Would Ad be there? Would Ad have decided to stay home, not knowing what to do with my frustration? If my mission as commercial envoy of the Araken had gone well -as had the other one, seven years before -the same could not be said of my other mission, my mission. Once again, I had gone up the wide river that penetrates the jungle up from the capital of the Northern potentate that we traded with. Once again, I had, with relative ease, hired a large group of carriers and a trustworthy guide who was very knowledgeable in the native legends about the existence of what they called the agan-uruk, the dimorphic creatures. Once again, I had been able to reach the edge of the great mountain chain. That time I had even climbed all the way up to the Great Lakes region, where the creatures supposedly live, despite having lost a handful of carriers, taken by the strange disease that infests the woods and marshlands, and that I was lucky to avoid, some may say thanks to the amulets that the head-priest of the Araken had given me. During that journey I had even managed to obtain a piece of a creature in one of our traps -a foot, to be exact, similar in all aspects to our own feet, therefore from either a dimorph or any normal native of the land. I had not found anything remotely like a camp or a village of any sort. Nothing." "I remember the ship scratching the stone of the pier. I could already see the shapes of people. Agitated, running back and forth, shouting names, kin looking for kin. Ad wouldn't do that. Ad always reserved the expression of emotions for smiles, looks, body movements. Most people experienced a ship's arrival as a once in a lifetime event. Their lives unfolded almost entirely in our port city of Golmak, maybe in the outskirts too, or in some portion of territory at a horseride's distance. To travel is to adventure, to adventure is to travel. Although both expressions have a slight phonetic difference -armek and armëk -they mean the same to the common folk: risk, danger, daring, challenging the infinitely calm routine of life in Golmak. Ad never wanted to travel with me. Ad did share my interest and curiosity for research and knowledge. The same indomitable urge to know how things work, well beyond the explanations in the Holy Ala'm or the Laws of the Araken -the latter being no more than pragmatic transpositions of the former. Ad had other ways of searching for knowledge. Reading was a favorite activity, reading like there was not enough time in life to read everything that has ever been written, whereas I…. I would travel-adventure. That was why we had decided that it would be wiser that Ad, not me, should be the one to someday get pregnant, to be the uru, the genitor from inside." "I remember how suddenly the fog lifted. There was Ad, an unmistakable shape, behind the band that was playing off-key a repetitive saruetz, and the high dignitaries and lineage heads that I had to salute, one at a time, with deference and respect, and from whom I received congratulations and promises of rewards. Behind all of them, Ad was the true center of my attention: the same beauty as in my previous return seven years before, the same demeanor, the same attitude, staying calmly behind other people, not wanting to be a part of the excited crowd. I like it that way: Ad's attention, eyes, and body were focused on me. And when I got close, it was relief that I felt. Ad's smile seemed to be saying, once more, 'You can always try again'." "How many times does one make love with the same person as if it were the first time? Few people can reply without irony: 'Once'. That day Ad and I became part of the group of happy few who can say 'three' -the very first, when we met, the second when I came back from my first expedition, and the third on that foggy day. Still at the harbor, Ad hugs me gently and for very long. And whispered: 'We'll talk about your trip tomorrow'. I recall feeling Ad's breasts harden. Ad must have felt the same with my penis. And immediately, in those brief seconds of desire's work, when one's desire pulls the other's desire and vice-versa, I felt the same happening to Ad's penis and Ad felt the same happening to my breasts. And both Ad and I felt, under our penises, the anxious moisture of our vaginas growing." "'Maybe now we should talk about the expedition'. Suggestions such as this, when coming from Ad, mean decisions already taken. Ad knew that I would have two important meeting the following day. The first, with the Araken, I would attend alone, and not a shadow of a problem was foreseeable. On the contrary: the metal booty that I had obtained from the Northern barbarians was such that I could almost expect to be granted a title of nobility, not to mention land and riches. My status in the Araken seemed to have one direction only: forward and upward. The second meeting, I would attend with Ad, since we were both full members of the Guild of Sages, a semi-secret group of fifteen people dedicated to the search of knowledge of the world, of a whole planet Earth to be discovered. We were all well versed in the exegesis of the Holy Ala'm; we had all learned how to read, write, and think in theological schools and we all had, in some moment or other in our youth, seriously considered the pursuit of a priestly career. But we all had decided instead to engage in the pursuit of knowledge and curiosity, to try to recover the 'Science' that our ancestors had practiced millennia before." "'What will you tell the Guild about the trip?' -and Ad's voice was now in the opposite register of the music of sex from a few hours before. 'Don't you think it's better that after this second attempt you abandon your pursuit?' 'But I won't abandon my pursuit, Ad, even you still support me on that, don't you?' 'You know I do. But you also know that I do it because I know that you believe that you are right. But if you insist on the search for the dimorphs, Ev, it can be….' 'Dangerous?', I completed. I knew the risk was real. Although the members of the Guild of Sages shared a code of honor that placed the search for knowledge above other loyalties, it was also true that several members of the Guild were simultaneously members of the Araken. The Araken had 101 members, representing all the lineages of Golmak. They all knew each other from the priestly schools -that was what united us as an elite and separated us from the common folk. In such circumstances it was easy, too easy, for any rumor or suspicion to leave the Guild and rapidly contaminate the Araken." "As Eva g Sirdi, member of the Sirdi lineage, one of the oldest in Golmak, I felt protected. Not having pursued the priestly career had not been a disadvantage, since that was not expected of all young people. Priestly teaching was expected for all, not the profession. My choice of a commercial career had been respected, and even more so after my successes with the Northern Barbarians. Even my semi-secret life in the Guild could be seen as an eccentricity of the kind allowed to the powerful. However, there was a rumor in town about how my commercial trips were a ruse for the satisfaction of my curiosity, a word that although not outrageous, had a titillating, provocative overtone, a taste of the forbidden. The true problem lay elsewhere: the nature of my search and curiosity, the question that I was asking, the answer that that question suggested." "Once, after my first expedition to the North, Ad ordered me, very harshly, to sit and pay attention. 'Listen, Ev, listen very carefully. Sometimes a priestly education too early in life leads those who have the knowledge of the sacred texts to be those who forget them sooner. Listen to this: Upon creating the Universe, Ala'm rejoiced in the beauty and perfection of Their work. The sky, deep blue when lit by the moon or light blue when warmed by the sun, was a thing of perfection and tranquility. The sea, reflecting the colors of the sky, leaped its waves, now gently, then furiously. The earth, green and flat, dark and mountainous, connected sky and sea. Such was A'lam's dwelling. To inhabit it with life did Ala'm create the plants that grow from earth, cast their seed and generate their own twins. Not satisfied with the plants, did Ala'm create the animals that move on it and did Ala'm make them more intricate than the plants they fed upon. He called some female, he called some male, and from the union of female and male new and different creatures were born. But seeing Ala'm that much was the dispute between females for males and between males for females, They made a new being, one that would feed on plants and animals. In the divine image did They create it, without female or male, and granted it with the gift of curiosity so that it could roam the world and possess it and, in the journey, find Ala'm Themselves, the one that is everywhere and nowhere. "'Why are you Reading me that, Ad? I know the Holy Ala'm. By heart. 'Because you can't take away from people that minor sentence. Minor, but of the greatest importance: in the divine image. At least you can't do it yet. And only Ala'm knows when you can…' 'But what I defend is somehow there, in the text', I argued, 'Ala'm was not satisfied with two-sex animals. One can say that Ala'm made them evolve. And since we do not descend from, say, a snake or a mockingbird, we must descend from people that still had the two-sex characteristic, such as monkeys do. My theory is not incompatible with the sacred texts. Nor with the ability that Ala'm gave me to… question. You know that is my standing, Ad'. Ad knew. Ad also knew the legends and myths that I had registered in the North and that told of a mythical people with two sexes." "Ad accepted my theory and as a curious person, as a member of the Guild, also had a practical mind and thought that it was impossible to demonstrate my hypothesis: 'You will never find your missing link, I'm afraid. I would give anything to help you achieve that goal and yet I would also give everything to have you give up your travels.' Differently from the tasteless stories told by the common folk, our arguments did not invariably finish with love making, with the perfect symmetry that the uneducated like, the two members of the couple taking turns in penetrating one another, time and time again in the endless pursuit of the perfect amorous equilibrium. Our arguments were… arguments, as if we were in the Guild of Sages, and always ended in an impasse, a deadend. 'So, Ad, your problem is that you think that there is no missing link. That there isn't a species like our own but in a previous evolutionary stage, a stage with two sexes?' 'No, Ev, that is not my problem'." "I didn't understand Ad's fear until, two weeks later, I received the summons from the Court of Inquiring of the Araken. I had never been present in a Court session. All that was known about that most rigid and secretive institution on Earth was the product of rumor, cautionary tales, scaring legends made to instill obedience and consensus. The most terrible tale had involved a relative of mine, Ca. My uru or genitor from inside -the person who gave birth to medid not share genitors with anyone, did not have ere, neither from the inside nor from the outside. My ulu, or genitor from the outside, however -the one who had inseminated my uru -shared genitors with Ca. They was, therefore, ere of my ulu. My alik. I was still an adolescent when my uru and my ulu embarrassingly announced that alik Ca had been banned to exile in a foreign land. They never wanted to explain to me why. Whenever they tried to do so they would give up, and I felt that they were embarrassed, that they could find or proffer the right words. Only years later did I come to know the truth and through indirect ways: Ca had been denounced to the Court of Inquiring for using only one of his genitals (the vagina) in the sexual act, and for refusing to use the other. How bigoted people can be when they impose their notion of 'sexual plenitude'! So narrow-minded, a law that criminalizes that! Today, as someone who dedicates life to the pursuit of knowledge and the satisfaction of curiosity, I think that my alik Ca was probably just ill, the victim of some recessive disease from the time in evolution when we had not yet achieved our stage of perfect unimorphs." "I never knew who denounced me to the Court. The Court accepts anonymous complaints and guarantees anonymity. The Court just could not accept that a member of the Araken and of one of the most prestigious lineages, and with priestly training, would use the sacred texts to find in them a hint, an opening, for a, as the sentence said, 'sinful confabulation' on the origins of humankind in two-sexed creatures. Ad's fear was confirmed. The love of my life watched the trial without flinching and when testifying supported courageously the merit of the work of the Guild and the right to be free to speculate and pursue curiosity. When asked about opinion on my theory, Ad replied honestly that we did not agree on that. But the Court used that against me: 'The fact that not even the trespasser's partner agrees with the sinful delirium confirms the enormity of the deviousness and heresy of the curiosity path that the trespasser has chosen to follow'." "I couldn't even say goodbye to Ad. And there won't be another return journey to Golmak. Nor ship, or long weeks at sea, or precious metals to transport, or festive receptions, titles or riches, fog in the harbor, Ad's smile, hair, hands, eyes, breasts, cock, cunt, sweat, voice, smell. They have only granted me one wish: that the place of exile be the Northern Barbarian potentate of my last trip. But, if in Golmak I had been banned for questioning the literal interpretation of the Holy Ala'm and the consequent symbiosis between ecclesiastical and political powers, in the Barbarian lands of the North I was seen, in the purest and simple, and therefore most brutal way as a perversion. I ended up being banished twice, from both home and the shabby barbarian encampment on the shores of the Great Lakes. I am now roaming deserted landscapes. I brought with me this copy of the Holy Ala'm, my only Reading, my only Writing paper. And a charcoal portrait of Ad. I live like a hermit and, too often, like a madperson. I talk to myself. I argue with myself. I rest motionless for long periods of time, until hunger makes me look for food. Slowly I give up." This seemed to be the last note by Eva g Sirdi. However, the mentioned charcoal portrait of Ad contained, in the back, a brief and final note, certainly written in two different moments. It is, for all intents and purposes, the note that made the member of the medieval Guild of Sages the pioneer of the modern science of human evolution: "Exhausted, I woke up to the vision of a camp. No idea how I got there. A campfire beside me. Shabby tents made of canes. Tiny creatures (thought they were infants) inspect me with curiosity. They laugh. They are disgusted too. They point at my genitals and breasts. They touch them with sticks. And they talked! Don't understand the language, but they talk! The work of Ala'm, praised be They! Then I watched them closer. 'Mutilation', I thought. 'Abnormality', too. Some of the creatures had a penis, a bag for exo-eggs, like lower animals, where the vagina should be. Some had just the vagina, uncovered by a hanging penis, although somewhat hidden by more flesh. These are the aganuruk, they have to be! Agan-uruk. The "divided people". Dimorphic. Dimorphs. Found what I've been looking for! […]" "[…] Too late. Henceforth I, most advanced representative of the higher stages of evolution and Ala'm's creation, will be just an object of disgust and curiosity, the strange unimorph of the tribe." * This fiction was inspired by the Gethenian theme of The left hand of darkness. It was developed to include not only the aspects of sex, gender, and sexuality, but also the social organization of power and knowledge, and plays with classical portrayals of the tropes of expedition, discovery, otherness (taken farther than cultural difference, including, therefore, questions of evolution). It also plays with time and chronology, picturing Earth society in a future that is an apparent return to our current past; and placing contemporary human bodies as "predecessors" in the evolutionary scale. This allows for the imagination of an altertopia that is simultaneously a fantasy and a "system" that draws inspiration from the archives of ethnography. There is, of course, danger in moving back and forth between fact and fiction, real lives of real humans, and those of imaginary characters. But in imagining bodies that are apparently radically different one ends up realizing the familiarity of the components; desire, sex, and the social organization of them can be imagined as otherwise, as different from our own, especially in what concerns inequality and power. Furthermore, gender disappears, relationality and sociality do not. This kind of social science fiction is necessarily permeated by feminist and queer values and perspectives, not taking for granted neither heteronormativity, nor binarism or the body. Although some ethnographic archives do provide us with a variety of gender and sexuality orders and regimes, and even with the non-centrality of gender in the Western conceptual sense, they do not provide us with the absence of gender.

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Perceived relationship quality in adolescents following early social-emotional deprivation

Orphanages in the Russian Federation are deficient primarily in social-emotional relationships (St. Petersburg-USA Orphanage Research Team, 2005). Children who spend their first months or years of life in orphanages have limited opportunities to form relationships and to develop proper social skills. This early experience has been associated with many problematic behavioral outcomes (Gunnar et al., 2007;Rutter et al., 2010). However, researchers have not frequently examined relationship quality of post-institutional (PI) adoptees, nor have they examined aspects of the adoptive family that might moderate institutionalization effects. The purpose of this study was to examine the self-reported relationship quality (using the Network of Relationships Inventory: Social Provisions Version; Furman & Buhrmester, 1985) of 10-17-yearold children adopted into the USA from Russian orphanages and to determine whether sibling characteristics (relative age, gender composition, sibling adoption status) moderate institutionalization effects. Older age at adoption was related to poorer friendship and sibling, but not mother, relationship quality. Older siblings and same-sex siblings buffered children from this negative age-at-adoption association.

Type for PI and non-PI (Lempers & Clarklempers, 1992) (Levy, 2010). Of those children, approximately 1500 were adopted to the United States in 2009 (United States Department of State, Office of Children's Issues). Although the quality of institutions varies throughout the country, Baby Homes in St. Petersburg, where most of the children in the current study resided prior to adoption, are selectively social-emotionally depriving, or Gunnar's (2001) level three institutions, meeting all needs except for typical caregiver-child interactions and stable, long-term relationships with consistent caregivers. Such an environment can be expected to be associated with subsequent relationship problems. Specifically, children receive adequate medical care, sanitation, nutrition, toys, and equipment; however, they experience 60-100 different caregivers during their first 19 months in the institution, and children typically see no caregiver on two consecutive days. Children rarely, if ever, experience warm, sensitive, contingently responsive interactions, and there is little opportunity to form an attachment relationship (The St. Petersburg-USA Orphanage Research Team, 2005Team, , 2008) ) . Indeed, many institutional children are classified as having disorganized attachments (Dobrova-Krol et al., 2010;The St. Petersburg-USA Orphanage Research Team, 2008;Vorria, et al., 2003;Zeanah, Smyke, Koga, & Carlson, 2005). Thus, research with these children can more specifically address the impact of early social-emotional deprivation, rather than other factors often associated with institutions, on later outcomes. --- THEORETICAL BASIS FOR INVESTIGATING POST-INSTITUTIONAL OUTCOMES: ATTACHMENT Attachment theory (Ainsworth, Blehar, Waters, & Wall, 1978;Bowlby, 1982) posits a probabilistic view of development, such that early experience, particularly in an attachment relationship, sets a child on a general path that leads to a set of possibilities rather than a predetermined outcome. The attachment relationship is the child's first experience of emotional closeness, and through consistent, responsive interactions with a few adults, children progressively develop "internal working models" of the purpose and structure of relationships that help them form expectations for the future (Bowlby, 1982;Sroufe, Carlson, Levy, & Egeland, 1999). Although children's models and expectations can change with experience, they enter each new relationship with learned dispositions that influence their interpretation of situations and interactions. Thus, the longer the child remains in a maladaptive situation, the more difficult it becomes to return to positive functioning (Sroufe et al., 1999). In the institution, high children-to-caregiver ratios (approximately 5-7: 1 during daytime and 9-14: 1 at night), age-based transitions (approximately two or three transitions by 2 years), high staff turnover, and inconsistent staff schedules (generally 10-24 hours 2-3 times per week, with 52-56 days of vacation per year), create an environment in which forming an attachment is all but impossible (Chisholm, 1998;The St. Petersburg-USA Orphanage Research Team, 2005). The inconsistency and emotional neglect from caregivers may contribute to problems with emotion regulation, including suppressing negative emotions and displaying positive emotions even in stressful situations (Cassidy, 1994;Bakermans-Kranenburg et al., in press). The lack of contingent interactions with a stable caregiver may be related to decreased emotional and behavioral control, including effortful attention regulation and inhibitory control (Bakermans-Kranenburg et al., in press;Dobrova-Krol, Bakermans-Kranenburg, van IJzendoorn, & Juffer, 2010). 1.1.1 Support for an attachment perspective. Attachment to a caregiver and responsive caregiving are theorized to support early behavioral, cognitive, and social development in non-PI children (Ainsworth, et al., 1978); and insecure attachment, especially when disorganized, is related to poorer outcomes in these areas (Carlson, 1998;Shaw, Owens, Vondra, Keenan, & Winslow, 1997;Sroufe et al., 1999). Research has also established a connection between extended institutional experience, as assessed by age at adoption, and behavior problems (e.g., Gunnar, Van Dulmen, & The International Adoption Project Team, 2007;Hawk & McCall, in press;Rutter et al., 2010), executive functioning problems (Bruce, Tarullo, & Gunnar, 2009;Merz & McCall, in press;Pollak et al., in press), and social difficulties (Ames, 1997;Gunnar et al., 2007;Julian, 2010;Rutter, Kreppner, & O'Connor, 2001) in childhood and adolescence. Deficient early social-emotional experience and lack of relationships in the institutions are hypothesized to be especially important to the quality of important relationships (e.g., mother, sibling, and best friend). One study (Vorria, Wolkind, Rutter, Pickles, & Hobsbaum, 1998) found that the lack of responsive, individualized care from a consistent caregiver, not physical deficiencies, resulted in more emotional disturbances and less harmonious, intimate relationships with peers in currently institutionalized children than children raised by their biological parents (non-PI). Studies have also found that longer time spent in the institution is associated with less secure attachment to adoptive mother (Bakermans-Kranenburg et al., in press;Chisholm, 1998;Juffer & Rosenboom, 1997;van den Dries, van IJzendoorn, & Bakermans-Kranenburg, 2009). Unfortunately, relationship quality in older PI children and adolescents has not been adequately addressed, even though relationship quality may be the domain of functioning most related to social-emotional deprivation and lack of attachment relationship. One relevant study found that later adoption was associated with poorer self-reported support from a best friend (Le Mare, Warford, & Fernyhough, 2001). --- IMPORTANCE OF RELATIONSHIPS WITH MOTHERS, SIBLINGS, AND FRIENDS --- Mothers. Although most research focuses on e arly mother-child relationships, the quality of this relationship remains important throughout adolescence. Non-PI children tend to rate their maternal relationships high in reliable alliance, affection, enhancement of worth, instrumental help, intimacy, and satisfaction, but quality decreases in adolescence (Furman & Buhrmester, 1985b, 1992;Lempers & Clarklempers, 1992). Adolescents' perceptions of high quality relationships with mothers have been associated with lower levels of adolescent depression (Aseltine, Gore, & Colten, 1998) and delinquent behaviors (Branstetter, Furman, & Cottrell, 2009;Hair, Moore, Garrett, Kinukawa, Lippman, & Michelson, 2005;Hair, Moore, Garrett, Ling, & Cleveland, 2008;Mason, Cauce, Gonzales, & Hiraga, 1994), higher levels of mental well-being (Armsden & Greenberg, 1987;Hair et al., 2008), and increased friendship quality (Kerns, Klepac, & Cole, 1996;Lieberman, et al., 1999). Very little research has examined mother-adolescent relationships in adoptees. Institutionalization has been associated with poorer mother-child relationships in early childhood, although most young PI children have good relationships with their adoptive mothers (Bakermans-Kranenburg et al., in press;Chisholm, 1998;Juffer & Rosenboom, 1997;van den Dries, et al., 2009). One study found that a similar proportion of PI and non-PI adolescents had positive relationships with their adoptive or biological mothers (Hodges & Tizard, 1989). Conversely, adoptive mothers of non-institutionalized domestic adoptees have reported more disagreements with their adolescents than biological mothers or stepmothers (Lansford, Ceballo, Abbey, & Stewart, 2001). --- Siblings. In studies of non-PI children, sibling relationships are exemplified by high levels of conflict, along with affection, alliance, companionship, intimacy, and nurturance (Furman & Buhrmester, 1985a,b, 1992;Lempers & Clarklempers, 1992). This environment of simultaneous closeness and conflict theoretically allows children to test and to develop social skills necessary for maintaining other relationships (Furman & Buhrmester, 1985a). Specifically, positive sibling relationships are linked to behaviors necessary for high quality friendships, including better conflict resolution strategies (Franco & Levitt, 1998;Recchia & Howe, 2009), higher levels of companionship and recreation with friends (Franco & Levitt, 1998), increased self-disclosure (Howe, Aquan-Assee, Bukowski, Lehoux, & Rinaldi, 2001), increased reciprocal interactions (e.g., companionship, emotional responsiveness, and prosocial activities: Karos, Howe, & Aquan-Assee, 2007), and, for girls, more emotional understanding (Howe et al., 2001). Further, positive sibling relationships have been directly related to increased friendship quality in middle childhood and early adolescence (Franco & Levitt, 1998;Yeh & Lempers, 2004). The only study of PI adolescents' sibling relationships reported more difficulties with siblings for PI children than non-PI comparisons (Hodges & Tizard, 1989). Among noninstitutionalized domestic adoptees, no difference was found in relationship quality between adoptees and their non-adopted siblings and two biological non-adopted siblings (McGue et al., 2007). Behaviorally, PI children adopted as sibling groups have higher ages at adoption but have lower or similar rates of behavior problems compared to single adoptees (Boer, Versluis-den Bieman, & Verhulst, 1994;Van den Oord, Boomsma, & Verhulst, 1994), and similar patterns are found for domestic adoptees (Erich & Leung, 2002;Hegar, 2005). This finding suggests a protective effect of having a sibling because older age at adoption is generally related to more, not fewer, behavior problems (Cederblad et al., 1999;Gunnar et al., 2007;Rutter et al., 2010). Further, social-emotionally deprived PI children may benefit more from additional interactions with siblings than non-PI children because of their limited earlier relationship experience. --- Friends. Approximately 78% of non-PI children in middle childhood have at least one best friend (Parker & Asher, 1993), and the best friend relationship is exemplified by companionship, intimacy, enhancement of worth, and some conflict (Furman & Buhrmester, 1985b;Lempers & Clarklempers, 1992). In adolescence, friendships tend to be high in support, intimacy, and affection, with some decreases in companionship and nurturance with age (Furman & Buhrmester, 1992;Lempers & Clarklempers, 1992). These findings may be qualified by sociometric status, such that high-and average-accepted children have more supportive and intimate friendships and are more satisfied with their friendships than low-accepted children (Parker & Asher, 1993). However, low-accepted children show the greatest variability in friendship quality (Parker & Asher, 1993), suggesting that some low-accepted children have very satisfying friendships, but perhaps with only one or two close friends. Poor friendship quality in non-PI children has been related to loneliness (Nangle, Erdley, Newman, Mason, & Carpenter, 2003), depression (Nangle et al., 2003), high school dropout rates (Parker & Asher, 1987), behavior problems (Hartup, 1995), and criminality (Parker & Asher, 1987). Conversely, high quality friendships are related to school involvement, higher grades, and social competency (Hartup, 1995;Gifford-Smith & Brownell, 2003). Further, children and adolescents who have at least one supportive friend are more involved in school (Berndt & Keefe, 1995), are more popular and socially competent, achieve higher grades, and have fewer behavior problems than those with no supportive friends (Hartup, 1995). PI adolescents who spent more than 24 m onths in a globally depriving Romanian institution reported less support from a close friend than non-PI children, early-adopted noninstitutionalized Romanian controls, and PI children adopted before 24 months (Le Mare et al., 2001). Hodges and Tizard (1989) also found PI children to be less popular and less likely to confide in friends than non-PI comparisons. Indirectly, several studies that use parent-reported measures of children's social problems, which are likely related to friendship quality, find that PI children have more reported social problems (Hoksbergen, Rijk, Van Dijkum, & Laak, 2004;Stams, Juffer, Rispens, & Hoksbergen, 2000;Verhulst, Althaus, & Versluis-Den Bieman, 1990) and disinhibited social behaviors (Bruce, et al., 2009) than non-PI children. Also, later adopted PI children (> 7-24 months at adoption) tend to have more parent-reported social problems than earlier adoptees (Cederblad, et al., 1999;Gunnar et al., 2007;Hawk & McCall, in press;Julian, 2010). These studies suggest that more exposure to institutions with deficient social-emotional relationships, few contingent-responsive interactions, and few opportunities to learn appropriate social skills, is related to more social and friendship problems. --- SIBLING CHARACTERISTICS AS POTENTIAL MODERATORS OF RELATIONSHIP QUALITY Sibling relationships may be especially important contributors to social skills and friendship quality (see above; Franco & Levitt, 1998;Yeh & Lempers, 2004). Certain characteristics of siblings have been associated with enhanced relationship quality in non-PI children; however, essentially nothing is known about these factors among PI children. --- Relative age. Among non-PI children, there are benefits of having an older rather than a younger sibling. Non-PI children with older siblings report greater admiration, intimacy, affection, and prosocial behavior in their sibling relationships than children with younger siblings (Buhrmester & Furman, 1990); however, companionship may be greater with closely spaced younger siblings (Furman & Buhrmester, 1985a). Similarly, although antagonism and conflict are generally high in sibling relationships, these negative interactions decrease with age for children with older siblings but not for those with younger siblings (Buhrmester & Furman, 1990). Karos et al. (2007) found that both the negative correlation between rivalry and reciprocal interactions and the positive correlation between reciprocal interactions and socio-emotional problem solving in the sibling relationship was seen only for children with older siblings. Further, children have reported that parents favor younger siblings (Furman & Buhrmester, 1985a), suggesting that relationship quality with mother may be higher for children with older than younger siblings. Similarly, because high quality sibling relationships are associated with positive friendships and social skills (Recchia et al., 2009;Yeh & Lempers, 2004) and having an older sibling is associated with better sibling relationship quality (Buhrmester & Furman, 1990;Furman & Burhmester, 1985a), it is expected that having an older sibling will be related to positive friendship quality. --- Gender composition. For non-PI children, same-gender siblings may be more beneficial than opposite-gender siblings. Same-gender siblings report higher levels of positivity (females only; Buhrmester & Furman, 1990), warmth and closeness (Furman & Buhrmester, 1985a), companionship (Furman & Buhrmester, 1985b), and intimacy (Furman & Buhrmester, 1985b) than opposite-gender siblings. In fact, Furman and Buhrmester (1985b) described same-sex sibling relationships as friendships, but with higher levels of conflict. The positive effects of same-gender sibling dyads may also be associated with friendship quality (see above), although the association with maternal relationship quality is unclear. --- Adoption status of sibling. The benefits of a sibling who is a biological child of the adoptive parents vs. an adoptee are unknown. For international adoptees (PI and non-PI), having more biological children in the adoptive family was associated with more behavior problems among adoptees, but not for those adopted with a biological sibling (Boer et al., 1994). Those adopted with biological siblings also had fewer problems than single adoptees, regardless of adoptive siblings (Boer et al., 1994;Erich & Leung, 2002). Conversely, biological children, who have not experienced institutional neglect, may be better models for appropriate relationship behaviors than other PI children. --- THE CURRENT STUDY The current study represented the first inquiry of PI children's self-reported relationship quality with mothers, siblings, and best same-sex friends. Children aged 10-17 years who had been adopted from primarily social-emotionally depriving Baby Homes in the Russian Federation completed a self-report relationship quality questionnaire to investigate the following questions: 1. What is the nature of the pattern of important relationships in PI children, and does this pattern differ from that of non-PI children? It was expected that PI children's pattern of relationships with mother, sibling, and best friend would be similar to that of non-PI children, but that PI children would report poorer relationship quality. 2. Does more prolonged social-emotional deprivation early in life relate to the quality of important relationships during later childhood and adolescence? Children adopted at older ages were expected to have poorer quality relationships with mother, sibling, and best friend (Le Mare et al., 2001). Attachment theory and past research on s ocial skills (Julian, 2011) and behavior problems (Hawk & McCall, in press) with this sample suggest relationship quality might be poorer in children adopted after 18 m onths of age, but relationship quality could continue to decrease with accumulated experience in the depriving institution (Sroufe et al., 1999). 3. Do sibling relationship characteristics moderate the association between age at adoption and relationship quality? Children with older siblings and those in same-sex sibling dyads were expected to show a s maller age-at-adoption effect than those with younger and opposite-sex siblings, respectively (Buhrmester & Furman, 1990;Furman & Buhrmester, 1985a). Predictions could not be made about sibling adoption status. --- METHODS AND EXPERIMENTAL DESIGN --- PARTICIPANTS Participants were 91 children between the ages of 10 and 17 years (M = 13.98, SD = 2.27) who were adopted from institutions in the Russian Federation into USA families. The Russian institutions have selective social-emotional deficiencies but adequate physical resources (see above; The St. Petersburg-USA Orphanage Research Team, 2005, 2 008). Because of this distinction, outcomes for these children can more specifically be attributed to early socialemotional deprivation. --- PROCEDURE Parents and children were made aware of the study through an article in the adoption agency's newsletter. They then received the packet of questionnaires containing a letter from the adoption agency director and informed consent materials. Some questionnaires were child self-report, and a separate informed assent for the child was included. Specific instructions were given for the parents not to look at the children's answers, and for the children to complete the questionnaire in private and to seal it for privacy. Participants were offered a modest payment ($15) for completion of the surveys (child response rate = 22%). --- Demographic information. Parents (78% mothers) reported the child's date of birth, date of adoption, and date of testing, which were used to calculate age at adoption and age at assessment. They also reported the child's gender, and the age, gender, and adoption status of all siblings. Children indicated their own age and gender, whether they had a sibling, the age and gender of their sibling, and whether they had a b est friend. Information was crosschecked between informants to ensure accurate data; no discrepancies were found. Because many parents did not report family demographic data, such as family income and parent's education (n = 27) or pre-adoptive child factors, such as birth weight (n = 71), they were not used as covariates in the analyses. Age at adoption was used as a surrogate for time in the institution (r = .69 using Baby Home records; Hawk & McCall, 2011). In previous analyses with this sample, rates of parentreported behavior problems, social skills, and executive functioning were minimal before but much higher after 18 months at adoption (Hawk & McCall, 2010;Julian, 2010;Merz & McCall, in press). Thus, age at adoption is used both as a continuous (M = 13.21, SD = 9.13) and a categorical (0-17 months: n = 71; 18-48 months: n = 20) variable in the current analyses. Due to the small sample size, characteristics of the sibling relationship were divided into three groups. Sibling relative age was defined as no sibling (n = 27), older sibling (n = 25; mean age difference = 5.91, SD = 6.39), or younger sibling (n = 36; mean age difference = 3.22, SD = 2.31). Gender composition was defined as no s ibling (n = 27), same gender (i.e., both boys or both girls; n = 26), or opposite gender (n = 36). Finally, sibling adoption status was defined as no sibling (n = 27), biological child of adoptive parents (n = 19), or adopted child (n = 35). Only four children had a genetically related sibling; therefore, the adopted child category included siblings both genetically related and unrelated to the focal child. --- Network of Relationships Inventory: Social Provisions Version. The Network of Relationships Inventory: Social Provisions Version (NRI: SPV; Furman & Buhrmester, 1985b) is a child self-report questionnaire that addresses relationship quality with significant others. It has previously been used to assess relationships with parents, grandparents, siblings, friends, teachers, and romantic partners, and has been given to children in 3 rd grade through college (Furman & Buhrmester, 1985b;Furman & Buhrmester, 1992). For the current study, children were asked to answer questions based on relationships with their mother, samesex best friend, and sibling. These nominations were self-selected, and if children had more than one best friend or sibling, they were asked to select the one who is most important to them. They could also indicate that they had no best friend (n = 3) or no sibling (n = 27). 1 Confirmatory factor analyses supported the use of these two composites. . Higher scores on these scales reflect poorer relationship quality. Relative Power was not included in analyses because is not included in either of the broader indexes. Although the NRI: SPV is a self-report measure that shows the children's subjective interpretation of the relationship, rather than its objective quality, the children's perception may be the most important aspect of the relationships because this shapes their own behaviors and their interpretation of others' behaviors (Furman, 1996). The NRI: SPV had adequate reliability in the current sample; Cronbach's alpha internal consistencies for all subscale scores were greater than .60 (M = .78), except mother instrumental aid (.30). The composite scores had Cronbach's alphas between .85 ( best friend negative interaction) and .94 (best friend social support). Validity had been examined by comparing scores across informants, with correlations of .34 for Support and .63 for Negative Interactions for scores between best friends (Furman, 1996). In the current sample, validity of the NRI was investigated by comparing composite scores to the parent-reported Internalizing and Externalizing broadband scales of the Child Behavior Checklist (CBCL, Achenbach & Rescorla, 2001). Using both extreme CBCL scores (T > 61) and mean scores, high Internalizing and Externalizing scores were associated with lower Social Support and higher Negative Interaction scores; however, these associations were only significant for mothers (Internalizing and Externalizing; most p < .10) and siblings (Internalizing only; all p < .09). Thus, poorer self-reported relationship quality did appear consistent with parent-reported behaviors. --- SELECTIVE RESPONDING To determine whether the current sample, which consisted only of children whose parents allowed them to complete the surveys, was selective, CBCL behavior problem scores were compared between children with self-report and parent-report data (n = 83) and children of the same age (10-17) with only parent-report data (n = 63). A multivariate analysis of variance (MANOVA) comparing the two groups on CBCL Internalizing, Externalizing, Social, Thought, and Attention problems was not significant, F(5, 128) = 1.39, p = .23, nor were any univariate tests (all p > .10). Thus, it appears that the sample was not selective by parents or children for problem behavior. --- RESULTS --- RELATIONSHIP QUALITY IN THE FULL SAMPLE It is possible that a relationship quality measure created for non-PI children may not be appropriate for PI children. To address this concern, the subscale scores for each relationship (within-subject) and their association with age at assessment (dichotomized 10-13 and 14-17) and gender (both between-subject) were examined in individual repeated measures analyses of variance (ANOVA) with post hoc comparisons between relationship sources. These analyses included only children with data for all three relationships (n = 64). Mean scores for each subscale for the current PI sample and a non-PI sample of Lempers and Clarklempers (1992) are presented in Table 1, and score profiles of PI children are presented in Figure 1. The relationship quality among sources, described below, was similar to those found in the non-PI literature, supporting the appropriateness of the NRI for PI children. analyses included only children with data for all three relationships. In comparisons between PI and Non-PI (Lempers & Clarklempers, 1992) children for each relationship, significance is indicated in non-PI relationship column; analyses included all children with data for each relationship. a p < .05. b p < .01. c p < .001. --- Comparisons between relationships (main effects). Relative to the other referents, PI children rated their mothers as the highest source of overall 1 and Figure 1). --- Non-PI versus PI. Table 1 shows comparisons between the current PI sample and a sample of predominantly white, 11-19-year-old children reared by their biological parents in working-class or middle-class families in rural midwestern towns (Lempers & Clarklempers, 1992) 1). --- Age at assessment and gender. Research with non-PI children suggests that as children grow from middle childhood through adolescence, their perceived social support from mothers and siblings decreases, while their social support from friends increases. Conflict is highest in the sibling relationship, and conflict tends to increase with age for mother relationships but decrease in friendships. Girls also tend to report higher relationship quality scores than boys (Buhrmester & Furman, 1990;Furman & Buhrmester, 1992). To investigate age at assessment and gender effects (between-subject) and their interactions with relationship source (within-subject) in the current sample, repeated measures ANOVAs were calculated with post-hoc contrasts for relationship source interactions. 57) = 6.49, p = .003, a nd Support, F(2, 57) = 5.86, p = .005, g irls reported higher quality friendships than boys, but no di fferences or slightly lower quality in mother and sibling relationships. Girls also reported more Conflict, F(2, 57) = 5.49, p = .007, with mothers than boys (see Table 3). The three-way interactions were not significant. --- AGE AT ADOPTION The primary variable of interest was age at adoption, because it had the possibility of reflecting the influence of the institutional experience. Because age-at-assessment and gender effects were seen in the sample, these variables were included in the following analyses as covariates and possible moderators and, as such, are reported only if they qualify age-at-adoption effects. To investigate the association between age at adoption and relationship quality, regression analyses were performed separately for each relationship source predicting the NRI composite scores with gender, age at assessment, age at adoption, and their interactions. Composite scores were used rather than subscale scores to decrease the total number of analyses and because the subscale scores included only three items each. Variables were entered in blocks to determine explained variance; however, tables report only the final model for clarity. Blocks were entered as follows: 1) Gender, 2) Age at Assessment, 3) Age at Adoption, 4) Gender X Age at Assessment, 5) Gender X Age at Adoption, 6) Age at Adoption X Age at Assessment. --- Form of age at adoption. The first analyses addressed the form of the age at adoption function. Three competing models were tested: a linear model, a dichotomous model (cut-off = 18 months), and a spline regression model (knot = 18 months; testing whether the slope of the regression line jumps or changes at 18 months). The only significant age-at-adoption effect for any relationship, controlling for the other variables, was the interaction of the linear age at adoption variable and gender in the prediction of best friend Negative Interaction, R 2 change = .09, F(1, 77) = 8.33, p = .005. The overall regression was marginally significant, F(6, 78) = 1.99, p = .08, R 2 = .13. For girls, older age at adoption was related to more Negative Interaction, but for boys, older age at adoption was related to less Negative Interaction (see Table 4 and Figure 2). Neither the dichotomous model, F(6, 79) = 0.89, p = .51, nor the spline regression model, F(10, 75) = 1.33, p = .23, were significant. Subsequent analyses used only the linear age-at-adoption variable, and figures depict this linear association --- EXTREME SCORES PI children are often distinguished by extremes rather than average scores (e.g., Hawk & McCall, in press;Julian, 2010;Verhulst, et al., 1990), and extreme scores are more indicative of problematic behaviors rather than fluctuations within the normal range. Because no standardization sample exists that describes scores indicative of NRI "extreme problems" in non-PI children, "extreme good" and "extreme bad" scores were created in two ways using the current data. First, for Social Support, mean scores greater than 4 were considered "good" (M = 4.45) and mean scores less than 2 were considered "bad" (M = 1.46). For Negative Interaction, scores less than 2 w ere "good" (M = 1.56) and greater than 4 were "bad" (M = 4.60). This provided a description of the qualitatively highest and lowest scores. Second, z-scores were created, and, for Social Support, children with z-scores in the highest 15% were considered "good" (M = 2.47), whereas those in the lowest 15% were considered "bad" (M = 4.65). For Negative Interaction, the lowest 15% were "good" (M = 1.73) and the highest 15% were "bad" (M = 3.72). The 15% cut-off is similar to the definition of "extreme problems" on the CBCL. Analyses revealed similar outcomes for both types of extreme scores; thus, only the qualitative score outcomes are reported. Table 5 presents the percentage of children with "good" and "bad" scores based on age at adoption, age at assessment, and gender, although the latter two are not discussed in text. Chi-squared analyses compared earlier vs. later adoptees, younger vs. older children, and boys vs. girls for each relationship quality score. A higher percentage of later adoptees reported "good", χ 2 = 4.98, p = .03, and "bad", χ 2 = 5.28, p = .02, Social Support from their siblings than earlier adoptees. Later adoptees also had a higher percentage of "bad" Negative Interaction, χ 2 = 4.98, p = .03, with their siblings (see Table 5). Although age at adoption was dichotomized for simplicity, these percentages also increased linearly (e.g., percentage of children with extremely low sibling social support by age at adoption: 0-5 months = 0%; 6-11 months = 3%; 12-17 months = 10%; 18-23 months = 20%; 24-48 months = 25%). Tests of age at adoption X age at assessment and age at adoption X gender revealed no significant effects. Note. Comparisons are within variables (e.g., 0-17 vs. 18-48 months). a p < .05. b p < .01. --- SIBLING CHARACTERISTICS The following analyses used linear regression to examine whether characteristics of siblings (relative age, gender composition, adoption status) were associated with relationship quality both directly and through interactions with age at adoption. Thus, main effects of sibling characteristics are reported if there is no age-at-adoption interaction. Variables were entered in blocks as follows: 1) Gender, 2) Sibling Characteristic, 3) Age at Assessment, 4) Age at Adoption, 5) Age at Assessment X Sibling Characteristic, 6) Age at Adoption X Sibling Characteristic. Tables show only the final model for simplicity. --- Relative Age. Gender --- Mother. The overall regression predicting Social Support was significant, F(9, 81) = 3.45, p = .001, R 2 = .28. The R 2 change was significant for the interaction of age at adoption and sibling relative age, R 2 = .08, F(2, 81) = 4.41, p = .02. F or children with no siblings or younger siblings, age at adoption was not associated with Social Support; but for those with older siblings, older ages at adoption were associated with more mother Social Support, holding all else constant (see Table 6 and Figure 3). The overall regression for Negative Interaction was not significant, F(9, 81) = 1.05, p = .41, R 2 = .10. --- Sibling Adoption Status. Regression analyses were conducted predicting relationship quality with gender, age at assessment, age at adoption, and sibling adoption status (no sibling, biological child of adoptive parents, adopted child; reference = no sibling). Although the regressions predicting mother, F(9, 71) = 2.29, p = .03, R 2 = .23, sibling, F(6, 49) = 2.3, p = .049, R 2 = .22, and friend, F(9, 68) = 2.03, p = .049, R 2 = .21, Social Support were significant, neither age at adoption nor sibling adoption status were significant predictors (see Table 7). The regressions predicting Negative Interaction were not significant for mother, F(9, 71) = 0.98, p = .46, sibling, F(6, 48) = 0.38, p = .89, or friend, F(9, 68) = 0.72, p = .69 (see Table 7). --- Mother. The overall regression predicting mother Social Support was significant, F(9, 79) = 2.96, p = .004, R 2 = .25. H owever, neither age at adoption nor gender composition was a significant predictor (see Table 8). The overall regression was not significant for mother Negative Interaction, F(9, 79) = 0.93, p = .51 (see Table 8). --- Sibling. The regression equation predicting sibling Social Support was significant, F(6, 57) = 4.14, p = .002, R 2 = .30. The change in R 2 increased significantly for sibling gender composition, R 2 change = .10, F(1, 61) = 6.79, p = .01, and the interaction of sibling gender composition and age at adoption, R 2 change = .10, F(1, 57) = 7.88, p = .007. For children with same-gender siblings, age at adoption was not associated with Social Support; but for those with an opposite-gender sibling, older age at adoption was associated with less Social Support (see Table 8 and Figure 4). Although the overall regression predicting sibling Negative Interaction was not significant, F(6, 56) = 1.15, p = .35, R 2 = .11, the R 2 change was significant for the interaction of sibling gender composition and age at adoption, R 2 change = .10, F(1, 56) = 6.50, p = .01. When the sibling was the opposite gender, older age at adoption was associated with more Negative Interaction, As a potential explanation, PI children tend to be conforming and accommodating, at least at younger ages, which may support the creation of relationships; and they may have a greater desire for relationships, given their early social-emotional deprivation. The combination of these factors may allow them to develop higher quality relationships than non-PI children, although this may be limited to earlier adoptees (see below). Because high quality relationships are related to positive social, academic, and psychological outcomes in non-PI children (e.g., Hartup, 1995;NICHD Early Child Care Research Network, 2009;Yeh & Lempers, 2004), these positive relationships may similarly buffer PI children from more problems. Although PI children exhibit higher than expected rates of problems, most are within normal limits (Gunnar et al., 2007). Possibly, being reared in an advantaged home with parents and siblings with good social skills and having friends may minimize problems in some PI children that otherwise might occur. Given these findings, future research on PI children should consider relationship quality as a potential moderator of long-term developmental outcomes. --- AGE AT ADOPTION Contrary to findings with parent-reported executive function, behavior problems, and social skills in this sample (Hawk & McCall, in press;Julian, 2010;Merz & McCall, in press), an ageat-adoption step-function was not found for relationship quality. Instead, increasing age at adoption was linearly related to increasingly poorer relationship quality (e.g., percentage of children with extremely low sibling social support by age at adoption: 0-5 months = 0%; 6-11 months = 3%; 12-17 months = 10%; 18-23 months = 20%; 24-48 months = 25%). Attachment dyads. Same-gender siblings may spend more time together, especially in younger childhood (Furman & Buhrmester, 1985a), resulting directly in better relationships. Finally, sibling adoption status was not associated with relationship quality either as a main effect or as a moderator of age at adoption. This finding bodes well for PI children because many adoptive parents are unable to conceive. This suggests that the beneficial effects of having a sibling, especially an older and/or same-gender sibling, are not dependent on t he adoption status of that sibling. --- LIMITATIONS The current findings are important because they are the first examination of perceived relationship quality in PI children and the moderating effects of sibling characteristics; however, some limitations should be acknowledged. First, the response rate (22%) was smaller than expected, resulting in a smaller sample and decreased power. This is a subsample of one of the largest populations of adoptive parents of PI children in the literature (total N = 1117; current wave N = 417), but the children's response rate could be smaller than parents' because both parent and child needed to cooperate. However, the children who did participate were not significantly different than those who did not, at least on m easures of behavior problems, suggesting that the current sample was not biased toward "good" children or children without behavior problems. Second, relationship quality consisted of PI children's perceptions, which could have reflected desired quality rather than objective quality; the perspectives of the relationship partner were not collected. The higher relationship quality may reflect a tendency for PI children to perceive their relationships as more idealized than non-PI children. However, the children's perception may be the best predictor of outcomes because children act and interpret others' actions based on perceptions (Furman, 1996). Further, the self-report measure was associated with parent-reported behavior problems. Finally, the current study is cross-sectional, so inferences cannot be made about age changes. Similarly, it could not be determined whether sibling characteristics were causal factors in relationship outcomes or the result of a third variable. Important events and characteristics of the children's lives between adoption and the current data collection were unknown, including aspects of the home life, how much time they spent with siblings when younger, familial social skills, and stressful events (e.g., death of a family member), all of which could have impacted relationship quality. Although these factors will be important to examine in future studies, the current study is unique in that it was one of the first to examine PI relationship quality and the first to suggest that sibling characteristics may moderate institutionalization effects. --- IMPLICATIONS The current findings suggest that resiliency following early deprivation is more possible than previously believed, at least in the domain of relationship quality. Given the nurturing and advantaged adoptive family environment, children with little to no r elationship experience or socio-emotional interactions are able to form high quality relationships, especially with adoptive mothers, even when they were adopted later than 18 months. Thus, the window for learning how to have relationships seems to be larger than originally believed, at least according to child selfreport. --- Sibling. The overall regression predicting sibling Social Support was significant, F(6, 57) = 3.38, p = .002, R 2 = .25. B ecause only children with siblings were included in these analyses, sibling relative age was converted to a dichotomous variable (older = 1). The change in R 2 was significant for the interaction of age at adoption and sibling relative age, R 2 change = .08, F(1, 57) = 5.70, p = .02. For children with younger siblings, age at adoption was not related to sibling Social Support; but for children with older siblings, older age at adoption was associated with more Social Support (see Table 6 a nd Figure 3). The overall regression for sibling Negative Interaction was not significant, F(6, 56) = 0.91, p = .49, R 2 = .09; however, the R 2 change was significant for sibling relative age, R 2 change= .08, F(1, 60) = 4.78, p = .03. Children with older siblings reported less Negative Interaction than those with younger siblings, t(56) = -2.25, p = .03 (see Table 6). --- Best Friend. The overall regression predicting friend Social Support was significant, F(9, 76) = 2.27, p = .03, R 2 = .21. T he interaction between age at adoption and sibling relative age, specifically older sibling, was significant; however, the R 2 change was not, F(2, 76) = 2.49, p = .09 (see Table 6). The overall regression predicting friend Negative Interaction was not significant, F(9, 76) = 1.50, p = .17, R 2 = .15, but the R 2 change for the interaction between age at adoption and sibling relative age was significant, R 2 change = .11, F(2, 76) = 4.68, p = .01. F or children with no sibling, older age at adoption was associated with more friend Negative Interaction; however, for children with younger or older siblings older age at adoption was associated with less Negative Interaction (see Table 6 and Figure 3). whereas when the sibling was the same gender, age at adoption was not associated with Negative Interaction (see Table 8 and Figure 4). --- Best Friend. The overall regression predicting friend Social Support was significant, F(9, 76) = 3.10, p = .003, R 2 = .27. The change in R 2 increased significantly for the interaction of gender composition and age at adoption, R 2 change = .06, F(2, 76) = 3.08, p = .05. H olding all else constant, when children had no sibling or a same-gender sibling, age at adoption was not associated with friend Social Support; however, when they had an opposite-gender sibling, older age at adoption was associated with more Social Support (see Table 8 andFigure 4). For friend Negative Interaction, the overall regression equation, F(9, 76) = 1.14, p = .35, R 2 = .12, was not significant (see Table 8). --- DISCUSSION PI children reported high levels of Social Support and low levels of Negative Interactions in their relationships with mothers, siblings, and best friends. Older ages at adoption were associated with poorer relationship quality with siblings and best friends, but not mothers. Older siblings and same-gender siblings buffered PI children from these negative age-at-adoption effects, especially for relationships with siblings. --- PI RELATIONSHIP QUALITY In the non-PI literature, 22% of children (aged 9-13) report having no best friend (Parker & Asher, 1993); however, in the current PI sample, only 3 children (3%) endorsed having no best friend. Further, PI children reported a similar pattern of relationships for subscale scores across the three referents as non-PI children, except that, contrary to expectations, they generally reported better, not worse, relationship quality than non-PI children (Lempers & Clarklempers, 1992). Spending time in a Baby Home, especially the lack of response-contingent interactions with a stable attachment figure and inadequate opportunities to develop working models of relationships, was expected to be associated with poorer, not better, relationship quality for PI children. theory suggests a rather specific age period during which most parent-reared infants develop a relationship with their caregiver (Bowlby, 1982), but the current data do not support such a specific age period. In contrast, Sroufe et al. (1999) Eventually, prolonged institutional exposure does seem to have a corroding effect on relationships, but the effects were not pervasive or consistent, and they were primarily with siblings and best friends, not with mothers. The mother relationship, which was not associated with age at adoption, was expected to have the strongest age-at-adoption effect because of the lack of maternal attachments in the Baby Homes. A potential explanation is that adoptive mothers are more invested in their children than siblings or friends, such that they are more willing to work on having a high quality relationship despite possible difficulties. Similarly, PI children may put more emphasis on the mother relationship because of their lack of attachment in the institution, and there may be a biological drive for a mother-child relationship over siblings and friends. --- SIBLING CHARACTERISTICS: HOW SIBLINGS BUFFER INSTITUTIONALIZATION EFFECTS The presence of a sibling buffered children from the negative effects of age at adoption on best friend Negative Interactions. Older ages at adoption were related to more friend Negative Interactions for children with no sibling, but not for those with a sibling. As the non-PI literature suggests, children with siblings may learn the skills necessary for high quality friendships, especially in terms of conflict resolution, within their sibling relationships (Franco & Levitt, 1998;Furman & Buhrmester, 1985a;Recchia & Howe, 2009). This practice may be particularly important for later adoptees, who spent a longer time without adequate relationship experiences and who had fewer opportunities to learn social skills early in life. Older siblings also muted the association between older ages at adoption and poorer relationship quality, consistent with the non-PI literature (Buhrmester & Furman, 1990;Furman & Buhrmester, 1985a;Karos et al., 2007). Older siblings may provide a more nurturing environment and be better models than younger siblings. PI children may learn more from older siblings, who are mentally and socially advanced and who may set the ground rules and tone of the sibling relationship, which could be more important for later adoptees, who are more likely to have difficulties. Such learning can occur sooner after adoption when the sibling is older rather than younger than the PI child. Similarly, PI children with same-gender siblings had higher quality sibling relationships than those with opposite-gender siblings, consistent with the non-PI literature (Buhrmester & Furman, 1990;Furman & Buhrmester, 1985a, 1985b). In the current sample, this was a buffering effect, in which children with opposite-gender siblings reported an association between older age at adoption and poorer sibling relationships, but this was not the case for same-gender sibling Further, the sibling relationship seems to promote resiliency in PI children, a topic that had not been examined previously. PI children with siblings presumably have more experience with interactions with children similar to their own age than those without siblings. Older siblings and same-sex siblings may spend even more time together, resulting in more opportunities to practice relationship skills and to develop an understanding of relationships.

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Research on the health of people who experience detention or incarceration in Canada: a scoping review

Background: We conducted a scoping review to define the extent and type of quantitative health status research conducted from 1993 to 2014 with people who have experienced detention or incarceration in correctional facilities in Canada. Methods: We searched 15 databases, reviewed reference lists and relevant websites, and consulted with key stakeholders to identify eligible studies. We reviewed records for eligibility and extracted relevant data from eligible articles. Results: We identified 194 studies that were eligible for inclusion. Most studies were conducted with males and with persons in federal facilities, and focused on mental health, substance use, and social determinant of health outcomes. Conclusions: Health status data are limited for several outcomes, such as chronic disease, injury and sexual and reproductive health, and for persons in provincial facilities and post-release. Efforts should be made to improve data collection and knowledge dissemination, so that relevant data can be used more effectively to improve health and health care in this population.

Background Worldwide, more than 11 million people are imprisoned at any given time, and more than 30 million people move through the prison system annually [1,2]. In Canada, there are more than 250,000 adult admissions and 14,000 youth admissions each year to correctional facilities [3,4]. On any given day, there are about 40,000 adults and youths in correctional facilities [5][6][7]. In Canada, jurisdiction over correctional facilities is shared between the federal, provincial, and territorial governments. Admission to a correctional facility prior to sentencing is called remand, and persons in remand are considered detained rather than incarcerated. Persons in remand and persons who are sentenced to less than 2 years are detained or incarcerated in provincial or territorial facilities, and those who are sentenced to 2 years or longer are incarcerated in federal facilities. International data suggest that people who experience detention or incarceration have poor health compared with the general population, as indicated by data on the prevalence of mental illness, infectious diseases, chronic diseases, and mortality [8]. Detention and incarceration may serve as a unique opportunity to provide health care, to initiate programs to improve health, and to link persons with appropriate services on release. Such interventions could improve the health of people who experience detention and incarceration, and also decrease health care costs [9], improve health in the general population [9][10][11][12][13][14], improve public safety [9], and decrease re-incarceration [9,15,16]. Decisions regarding priorities for research, programs and policies should be informed by Canadian data on the burden of disease and interventions in this population [17]. We conducted a scoping review to describe the extent and type of quantitative health status research conducted between 1993 and 2014 on people who have experienced detention or incarceration in correctional facilities in Canada. In summarizing these data, we aimed to identify areas that have been well defined and gaps in evidence that we can use to inform future research. --- Methods We conducted the scoping review [18,19] according to a protocol that we defined a priori (available from authors on request). --- Search strategy We searched Medline, PsycINFO, Embase, the Cochrane Library, Social Sciences Abstracts, Social Services Abstracts, Sociological Abstracts, CINAHL, Criminal Justice Abstracts, ERIC, Proquest Criminal Justice, Proquest Dissertations and Theses, Proquest Dissertations and Theses: UK and Ireland, Web of Science, and Scopus in April 2014 (see Additional file 1 for search strategy). We reviewed reference lists of included studies and relevant reviews. We did not use any language restrictions, though we used only English language search terms. We searched websites of relevant organizations, specifically the Correctional Service of Canada, Statistics Canada, the Office of the Correctional Investigator, Public Safety Canada, the provincial and territorial Ministries responsible for correctional facilities, PASAN, The John Howard Society of Canada, the Canadian Association of Elizabeth Fry Societies, and the Canadian HIV/AIDS Legal Network. We also consulted with knowledgeable persons in some of these organizations. --- Study selection and data extraction Population We included studies of adults and adolescents who had been detained or incarcerated in a prison or jail in Canada, whether they were remanded or sentenced, and whether the study focused on the period prior to, during, or subsequent to detention or incarceration. We included studies that included other populations if the studies presented stratified results for persons who met this population criterion. We excluded studies that did not specify that participants had been in detention or incarcerated, e.g. studies of "offenders" or "forensic" populations that did not specify a history of detention or incarceration. --- Study period Studies were eligible if they reported data on health from 1993 to 2014. We chose 1993 as the start date for our period of eligibility because we wanted to capture recent data and we hypothesized that a reasonable number of studies would have been conducted after this date. In addition, this date follows the enactment of the federal Corrections and Conditional Release Act in 1992 [20], which may have affected the health care services provided in federal correctional facilities. We included studies that did not specify the dates on which they were conducted if they were published in or after 1997, which assumes a maximum four-year lag time from conducting a study to publication. --- Study types We included experimental studies (i.e. randomized controlled trials, quasi-randomized controlled trials, and non-randomized controlled trials), quasi-experimental studies (e.g. controlled before-after studies, interrupted time series studies), and observational studies (i.e. cohort studies, case-control studies, cross-sectional studies). We included reports of administrative data as well as studies that collected primary data. --- Outcomes of interest We included indicators of health as defined by the Canadian Institutes for Health Information [21], including indicators of health status and health system performance, and social determinants of health as per the Public Health Agency of Canada [22]. Since we were interested in defining health status, we included studies that provided absolute measures of health (e.g. percent or number of persons with a certain condition or behaviour) and not studies that specified only relative measures of health (e.g. relative risks, odds ratios, etc.). For some determinants of health, such as gender, race/ethnicity, employment and education status, we included studies only if they also specified other health status data or if they summarized these data for the whole source population of interest. We included only studies that reported individual-level data (e.g. a study that reported only the total proportion of urinalysis tests that were positive in an institution but did not specify the number or percent of persons who had positive tests would be excluded). --- Review procedures Two reviewers (FGK and AS) independently reviewed titles and abstracts for eligibility, and any disagreements were resolved by discussion. For full article review, we conducted a pilot to ensure a high level of agreement regarding eligibility. One reviewer (FGK or AS) then reviewed each full article to assess eligibility, with discussions regarding any decisions that were not clear. --- Data extraction For eligible articles, one reviewer (FGK or AS) extracted data using a data extraction form that we developed, piloted, and modified. We extracted data on study context, populations included, design, outcomes, and results. --- Analysis We planned a priori to summarize data based on study design, whether each study was conducted in the federal or provincial/territorial system, with females or males, and with youth or adults, in which provinces or territories the study was conducted, and the types of outcomes included. We classified observational studies as cross-sectional if the data were collected at a single point in time and no intervention occurred, and longitudinal if the data were collected over a period of time and no intervention occurred. We categorized interventional studies as per the Cochrane Handbook classification (Table 13.2) [23]. We classified a study as involving youth if the record specified that youth or adolescents were involved or that the study was conducted in a facility for youth or adolescents or with persons younger than 20, and as involving adults if the record specified that the study was conducted with adults or in a facility for adults, or if persons included were aged 17 and older. We categorized outcomes and behaviours into one of the following categories: death, chronic disease, communicable disease, mental health excluding substance use outcomes (using DSM-V categories when appropriate [24]), substance use, injury, sexual and reproductive health, health system, and social determinants of health. To identify data from studies that were reported in multiple publications, we sorted and compared extracted data on the basis of author name, study location, dates, and sample size. For the purposes of summarizing data, we considered data described in multiple publications as a single study if the sample data matched. --- Results As shown in Figure 1, we identified 2560 records: 2419 through database searches, 34 from reference lists and sources known to the authors, and 107 on websites. After eliminating duplicates, there were 2239 records remaining. Of these, 515 were eligible for full review. We were unable to retrieve 1 article [25]. Of the remaining 514 full articles, 8 were duplicates that had not been identified previously, and 219 articles were eligible for inclusion. These 219 articles represent 194 unique studies (see Additional file 1). Key characteristics of included studies are summarized in Table 1. Seventy-five studies were conducted in multiple provinces, of which 92.0% (n = 69) were conducted in federal correctional facilities only. One third of studies were conducted in British Columbia, Ontario, or Quebec, and in almost ten percent of studies, the geographical location was not specified. More than 60% of studies were conducted in only federal facilities. Over ninety percent of studies were conducted with persons while detained or incarcerated, and collected data only from the period while they were detained or incarcerated. Eighty-six studies included only men, and in another 35 studies, more than two thirds of participants were men. More than three quarters of studies included only adults. Seventy-one point six percent of studies were cross-sectional, 20.6% were longitudinal, and 7.7% were interventional. The majority of studies (N = 119) were conducted with the general inmate population, with some exclusions based on concerns about language, literacy, safety, or mental health. Other populations studied include persons who were participating in specific programs in correctional facilities (N = 17), persons convicted of sexual offenses (N = 12), persons who used drugs (N = 5), Aboriginal persons (N = 5), and persons with a history of self-injury (N = 5). One quarter of studies (N = 49) included less than 100 participants, 17 of which were conducted in the general population. Sixty-four studies used only data from administrative databases or file reviews, i.e. the researchers did not collect primary data, most of which (n = 58) were conducted only in federal facilities. Administrative For 65 studies, the dates when the study was conducted were not clearly specified. Dividing the period under study (1993 to 2014) into two equal intervals, it was possible to ascertain the period when the study was conducted for 154 studies based on the dates of publication as well as the dates when the study was conducted as reported in articles; data were collected before 2004 in 80 studies, between 2004 and 2014 in 51 studies, and spanning both periods for 23 studies. Table 2 shows the number of studies that reported outcomes in different health status categories. A large number of studies reported mental health (N = 99), substance use (N = 86), and social determinants of health (N = 80) outcomes, while comparatively few studies reported communicable disease (N = 35), injury (N = 30), sexual and reproductive health (N = 29), and in particular chronic disease (N = 6) outcomes. Regarding specific outcomes, a large number of studies reported data on --- Discussion This review identified 219 publications representing 194 studies that were conducted from 1993 to 2014 with people who experienced detention or incarceration in correctional facilities in Canada. The majority of studies were conducted with persons during detention or incarceration, with persons in federal facilities, and with only men. The greatest number of studies presented mental health, substance use and social determinant of health outcomes, and few studies reported chronic disease, sexual and reproductive health, and injury outcomes. Notably, the great majority of people who experience detention or incarceration in Canada have short sentences or are in remand and therefore serve their time in provincial or territorial facilities, with less than 5% of admissions to federal facilities [3,4,26]. This review found that most research on health status conducted from 1993 to 2014 has focused on persons in federal facilities. This may be due to longer periods of incarceration in federal facilities that provide more time to assess health and conduct research, a greater focus on rehabilitation (including health) in the federal system, greater accessibility of administrative and health data in the federal system compared to provincial facilities, or the challenges of following persons post-release who are not under community supervision. More clearly defining health and intervening to improve health in persons who experience detention or incarceration in provincial and territorial facilities could have a relatively large health impact on this population, with potential ripple effects on family and community health, public safety, and costs to society of health care and criminal justice system involvement [9]. Considering the large number of people who experience detention and incarceration each year in Canada and the fact that the State has a clear obligation to provide health care during detention and incarceration, the number of studies identified in this review is small. There is a particular lack of data in this population for important outcomes such as chronic diseases, sexual and reproductive health, and injury, some of which may be amenable to primary, secondary, and tertiary prevention interventions [27]. The paucity of evidence identified could reflect a lack of collection of health data (whether routinely or for specific projects), a failure to analyse collected data or to disseminate collected data, or limitations in our search strategy. It may also be, in part, a downstream effect of the lack of dedicated funding in Canada for research focused on prison populations, in contrast with the USA [28]. Population health status data should inform decisions about how to focus limited resources in correctional facilities and after release, and data on the general population of persons who experience detention and incarceration could be used to determine the population burden and to estimate and compare the impact of proposed interventions. Instead of multiple independent small studies of specific outcomes, researchers and health administrators should use strategies that are more efficient and provide a more complete picture. Existing processes at intake or routine evaluation could be optimized by identifying which data should be routinely collected [29], standardizing questions or measurements across jurisdictions including levels of government, and implementing or improving the use of electronic databases [30]. A periodic population --- Childhood abuse 25 Other adverse childhood experiences 16 Child welfare involvement 9 Out of home placement 4 --- Residential school involvement 4 Witnessed domestic violence 9 Family and social connectedness 18 Coping skills 4 Locus of control 3 Self-esteem 6 Intelligence 2 Literacy 1 health survey could provide a cross-section of health data across persons in detention in Canada, potentially including physical measurements and biological sampling [31]; similar comprehensive health surveys have been conducted across correctional facilities in the USA [32,33] and in federal facilities in Canada [29,[34][35][36][37][38][39][40]. Further, with appropriate measures in place to ensure informed consent and privacy, data from administrative sources and from periodic surveys could be linked to external administrative data sources to look at health status in the community before and after detention or incarceration, including vital statistics registries, health services utilization data, and social services utilization data [41,42]. There are several potential limitations to this review. We included only studies that reported absolute data on health status, given our interest in understanding the quantitative burden of disease, which means that we have excluded some studies that reported health outcomes, and we did not include qualitative data. While we endeavoured to optimize our search strategy, we may have missed relevant studies, as noted above, especially studies that were not published in the peer-reviewed literature. We have described our search strategy in detail and provided our search terms in an Additional file 1 for transparency and reproducibility. Though we aimed to capture studies conducted from 1993 through 2014, our study would not have captured most studies conducted in the past few years, given the typical lag in time from data collection to study publication. Regarding study procedures, only one author reviewed most full articles and extracted data from eligible articles, which may have led to errors in determination of eligibility or in the data presented. We attempted to minimize errors by discussing and defining in detail the eligibility criteria, piloting our review and data extraction process to achieve a high level of consistency and accuracy, and checking extracted data. More work is required to improve our knowledge about the health of persons who experience detention and incarceration in Canada and to facilitate the application of health status data. Together with key stakeholders, including persons with a history of detention or incarceration [43], provincial, territorial and federal governments should consider which health status data are required for action to improve health, health care and security, and then ensure that these data needs are reflected in data collection at intake and other routine evaluations, as well as in surveillance programs, surveys, and other research initiatives. Consideration should be given to the analysis and dissemination of collected data to optimize their reach and impact. Persons conducting research and making decisions about health initiatives need to review both published and gray literature to inform their work and to minimize the duplication of research efforts [17]. Finally, as data emerge on various aspects of health in this population and on effective interventions, we should iteratively assess and define research priorities for improving health. --- Conclusions Health status data are limited for persons who experience detention and incarceration in Canada. Data are lacking on chronic disease, injury and sexual and reproductive health outcomes, and for persons in provincial facilities and after release. Further research should be done to elucidate health status in this population, and research should be streamlined to improve efficiency. Consideration should be given to which data are required for action to improve health and health care in this population, and efforts should be made to ensure that knowledge is disseminated to decision makers and other key stakeholders. --- Additional file Additional file 1: Search strategy and reference list for identified studies. --- Competing interests The authors declare that they have no competing interests. --- Authors' contributions FGK led the study, developed the protocol, conducted the searches, reviewed records and articles for eligibility, extracted data, and wrote the article. AS reviewed records and articles for eligibility and extracted data. All authors contributed to the study design and to revising the manuscript, and approved the final manuscript.

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What happens in the Lab: Applying Midstream Modulation to Enhance Critical Reflection in the Laboratory

In response to widespread policy prescriptions for responsible innovation, social scientists and engineering ethicists, among others, have sought to engage natural scientists and engineers at the 'midstream': building interdisciplinary collaborations to integrate social and ethical considerations with research and development processes. Two 'laboratory engagement studies' have explored how applying the framework of midstream modulation could enhance the reflections of natural scientists on the socio-ethical context of their work. The results of these interdisciplinary collaborations confirm the utility of midstream modulation in encouraging both first-and second-order reflective learning. The potential for second-order reflective learning, in which underlying value systems become the object of reflection, is particularly significant with respect to addressing social responsibility in research practices. Midstream modulation served to render the socio-ethical context of research visible in the laboratory and helped enable research participants to more critically reflect on this broader context. While lab-based collaborations would benefit from being carried out in concert with activities at institutional and policy levels, midstream modulation could prove a valuable asset in the toolbox of interdisciplinary methods aimed at responsible innovation.

processes (21st Century Nanotechnology Research and Development Act 2003;European Commission 2004, 2007;Netherlands Organisation for Scientific Research 2008). Political concern for the societal impact of science and technology is in itself nothing new (cf. Roosevelt 1936). What distinguishes recent policies is a widespread interest in socio-technical integration at the 'midstream': 'co-operative' or 'interdisciplinary' research that targets early stage R&D decisions, as opposed to 'upstream' funding or 'downstream' regulatory decisions (Fisher et al. 2006). The European Commission for instance aims to: ''encourage actors in their own disciplines and fields to participate in developing Science in Society perspectives from the very beginning of the conception of their activities'' (European Commission 2007, p. 6). While these mandates mark a political interest in interdisciplinary research efforts to integrate social and ethical concerns at early stages of R&D, the appropriate means by which such integration is to occur is still open to experimentation. The recently developed framework of midstream modulation (MM) opens one potential avenue for interdisciplinary collaboration in the research laboratory.1 Two 'laboratory engagement studies' (Fisher 2007) have applied this framework to address the question of social responsibility in research practices, focusing on researchers' critical reflections on the broader socio-ethical context of their work. These studies sought to gauge to what extent MM could help render more visible the broader context of laboratory research, and whether research participants considered critical reflection on this broader context to be relevant. --- Engaging Researchers with the Socio-Ethical Context of Their Work Contrary to the 'neutrality view' of social responsibility-the notion that the social responsibility of researchers is exhausted by the disinterested pursuit of scientific knowledge-scholars have argued that the social responsibility of researchers should include critical reflection on the socio-ethical context of their work (Verhoog 1980). This normative stance reflects recent observations in ethical and normative scholarship (cf. Douglas 2009), including engineering ethics and the ethics of science and technology. Several engineering ethicists have argued for the early assessment of moral issues in technological design by direct involvement of scientists and engineers. Van de Poel and Van Gorp have similarly argued that ''designing engineers have a moral duty to reflect on the ethically relevant choices they make during the design process' ' (2006, p. 335). While laboratory science differs in many ways from engineering, similar challenges have been voiced in relation to laboratory science. According to Ziman, ''the transformation of science into a new type of social institution'' requires that the ethical dimensions of research should become part of the 'ethos' of science (1998, p. 1813). Accordingly, various scholars have suggested new multidisciplinary engagements in light of the radical ethical challenges posed by new and emerging science and technology (Herkert 2009, personal communication;Khushf 2006;Moor 2005;Schuurbiers et al. 2009b). If ethical and normative scholarship has established a moral imperative for, and a general vision towards, integrating such reflection into research, it has been less clear on how to implement this vision. Theoretically established claims that scientists and engineers should reflect on the normative dimensions of their work do not in themselves enforce or encourage such reflection. Indeed, policy calls for ethical reflection may have at best a tangential effect on research practices because researchers generally perceive the broader socio-ethical context of research as peripheral to their work (Guston 2000;Rappert 2007;Schuurbiers et al. 2009a). The question of implementation can thus stymie broad normative commitments to ethical reflection in research practice. The studies presented here sought to tackle this challenge by supplementing the descriptive techniques of MM with the explicit normative commitment of an 'embedded ethicist'. While MM is more attuned to raising 'reflexive awareness' among R&D practitioners (Fisher et al. 2006), could it offer possibilities for defining a context-sensitive form of ethics, using ethnographic methods that would open up the 'black box of science and technology' to normative inquiry (Van de Poel and Verbeek 2006)? --- Midstream Modulation Midstream modulation is a framework for guiding intervention-oriented activities in the laboratory that aims to elucidate and enhance the 'responsive capacity' of laboratories to the broader societal dimensions of their work (Fisher et al. 2006).2 Developed by Erik Fisher during a three-year laboratory engagement study, MM has been applied in a range of laboratories around the world as a form of 'sociotechnical integration research', or STIR (Fisher and Guston 2008). 3 MM extends more traditional laboratory ethnographies by augmenting participant observation methods with distinct engagement tools that allow for feedback, discussion and exploration of research decisions in light of their societal and ethical dimensions. An 'embedded' social or human scientist interacts with laboratory practitioners by closely following and documenting their research, attending laboratory meetings, holding regular interviews and collaboratively articulating decisions as they occur through the use of a protocol 4 that maps the evolution of research and helps feed back observation and analysis into the laboratory context itself (Fisher 2007). Regular use of the protocol allows for collaborative exploration of the nature of research decisions, with the ultimate aim of shaping technological trajectories by rethinking the processes that help characterize them (Fisher et al. 2006). Since the general possibility and utility of MM was tested in an earlier pilot study (Fisher 2007), the studies presented here aimed to explore the extent to which MM could be applied to enhance lab-based critical reflections on the broader socioethical context of research. As such they attempted to bring together the normative approaches of the ethics of science and technology with the descriptive richness of science and technology studies (STS) (Radder 1998;Van de Poel and Verbeek 2006;Zuiderent-Jerak and Jensen 2007). These research studies asked two questions: (1) How can broader social and ethical dimensions of research be rendered visible in the laboratory? and (2) Do laboratory practitioners perceive critical reflection on the broader socio-ethical context of their work to be relevant? --- First-and Second-Order Reflective Learning To assess the research findings in light of these questions, I distinguish between first-and second-order reflective learning (Van de Poel and Zwart 2009;cf. Sclove 1995;Wynne 1995;Schot and Rip 1997;Grin and van der Graaf 1996). First-order reflective learning is an iterative process by which a professional experimentally finds solutions to problems using several lines of inquiry. This process ''takes place within the boundaries of a value system and background theories'' (Van de Poel and Zwart 2009, p. 7). First-order reflective learning thus concerns ''improvement of the technology and the improved achievement of one's own interests in the network.'' Second-order reflective learning, on the other hand, ''requires a person to reflect on his or her background theories and value system'' ( Van de Poel and Zwart 2009, p. 7). In second-order learning, value systems become the object of learning while in first-order learning these are taken for granted. This distinction can be applied to the social responsibility of researchers: firstorder reflective learning is reflection 'within' the research system. Van de Poel and Zwart note, ''In first-order reflective learning, moral issues are dealt with within the bounds of the background theories and are approached from within the value system of the actor'' ( Van de Poel and Zwart 2009, p. 7). In terms of responsibility, such forms of reflection involve compliance to one's internal responsibilities towards the research community such as the responsible conduct of research and environmental health and safety. Second-order reflective learning involves reflection 'on' the research system, including the value-based socio-ethical premises that drive research, the methodological norms of the research culture, and the epistemological and ontological assumptions upon which science is founded (Verhoog 1980): the background theories and values of the research system itself become the object of learning. The value of MM with respect to the challenge for the ethics of science and technology lies in its ability to support second-order reflective learning. In addition to several instances of first-order learning that occurred as a result of the interdisciplinary interactions, MM served to enhance critical reflection on the socioethical context of lab work. Note that the studies did not assume that laboratory practitioners have a general 'reflexive deficit', or that scholars from the humanities and social sciences are somehow more reflexive. Rather, they sought to test the hypothesis that social scientific and humanistic practitioner knowledge could complement, through interdisciplinary collaboration, natural scientific practitioner knowledge. --- Midstream Modulation in Delft and Tempe The STIR studies described here consisted of two consecutive laboratory engagement studies: in the Department of Biotechnology at Delft University of Technology, The Netherlands (Fall 2008) and in the School of Life Sciences at Arizona State University, Tempe, USA (Spring 2009). A total of eight laboratory researchers participated in the studies. I had regular interactions during a period of 12 weeks with four of these researchers. The other four participants acted as 'controls', doing only the pre-and post-interviews at the beginning and end of the study (see Table 1). The participants were all PhD students in molecular biology. Researchers in the Delft Department of Biotechnology focused on the use of microorganisms for industrial production of chemicals from renewable resources and as diagnostic systems, while those in the Tempe Photosynthesis Group applied genomic and molecular biological techniques to elucidate physiological processes in cyanobacteria with a view to bioenergy generation. --- Data Collection Following the MM pilot study (Fisher and Mahajan 2006), interactions with research participants consisted of pre-and post interviews, participant observation, regular application of the protocol and collaborative drafting of visual representations of the research process. The pre-and post-interviews enquired into the research objectives, decision-making structures, implicit and explicit references to societal goals in the project description and changes in participants' awareness of and attitude towards ethical and societal dimensions of the research. The preinterviews marked the beginning of a period of participant observation in which I followed the 'high interaction' participants, spending 8-12 h per week in the lab and participating in regular lab meetings whenever possible. During the research phase, the STIR protocol was applied (Fisher and Mahajan 2006;Fisher 2007;Schuurbiers and Fisher 2009). Reconstructing decisions by way of the protocol allows for reflection on how the interplay of various decision components leads to decision outcomes, constituting a collaborative process in which both observed and reported information is reflected back to the practitioner over time. The embedded scholar thus becomes ''part of the convergence of goals, strategies, and socio-material configurations'' (Fisher and Mahajan 2010). Given the normative background that motivated these studies, my engagements attempted, in addition to bringing out latent MM 'de facto' considerations, to examine how issues in the ethics of science and technology as such could be brought to bear on the research process with the goal of 'deliberately' expanding what researchers took into account (Fisher et al. 2006). Since the goal of STIR was to explore the extent to which interdisciplinary interactions may serve to bring out a range of potential latent and implicit broader issues, I tried not to determine in advance which issues were to be considered as relevant. Indeed, a wide range of issues emerged as a result of the interactions-and were classified only in retrospect (see Table 2). Schematic overviews of the research progress indicate the links between the interrelated series of decision processes mapped over the twelve-week period (e.g., see Fig. 1). As with the protocols, the initial drafts of these overviews were based on earlier conversations, and were discussed regularly with participants, and adapted on the basis of the feedback provided. New drafts were discussed at the following meeting, and the iterative process was repeated. These overviews, and the regular discussion of them, confirmed my understanding of the unfolding research project, built my 'interactional expertise' (Collins and Evans 2002), and identified relationships between the research and the broader discussions held during the protocol meetings. --- Objects of Reflection The iterative process of observation and feedback by means of the protocol and research overviews served to render normative issues that were directly related to the research at hand more visible to myself and my collaborators. Observation and feedback predominantly focused on research goals (knockout or overexpression of protein production pathways followed by phenotypic characterization) and molecular biological techniques (plasmid insertion, the polymerase chain reaction [PCR], separation gels, high performance liquid chromatography [HPLC], and so forth). Still, reconstructing 'technical' decisions by way of the protocol quite naturally brought out 'microethics'-normative issues concerning ''individuals and internal relations of the engineering profession'' (Herkert 2005, p. 373). Unpacking a decision not to repeat a gel run for instance could bring out financial and time considerations, but also more overtly normative issues such as concerns about the expectations of a supervisor or the epistemic norms of the research community (verifiability, impartiality, scrupulousness). Asking why research participants took protective measures against harmful effects of carcinogens brought out personal health and safety and environmental considerations, but could also invite a research participant to comment on how colleagues ought to behave, or lead into a discussion about the appropriateness of safety regulations. In addition to the kinds of microethical discussions-lab practices, responsible conduct of research and environmental health and safety concerns-emanating directly from the laboratory work, the feedback processes also occasioned discussion of macro-ethical issues, normative issues that apply ''to the collective social responsibility of the profession and to societal decisions about technology'' (Herkert 2005, p. 373). Enquiring into the impact of a confidentiality agreement on the freedom to publish research results could lead us to examine intellectual property, confidentiality and the influence of private investors on research. A question on the relationship between expectations raised in a research proposal and the actual work done could serve to explore the role of promises and expectations in research, science-policy interfaces and hype-disillusionment cycles in research. Ultimately, repeated questions like ''How do you know that the results you have just obtained are actually a result of your transformations?'' led to discussions on philosophical topics like reductionism and the problem of underdeterminacy of scientific data. Table 2 categorizes the range of topics discussed and provides indicative questions that initiated such discussions, showing how implicit value judgments were rendered explicit by asking 'broader' questions. Most of these topics were addressed in each of the interactions, given that their discussion was dependent on the nature and stage of the research projects as well as the particular experiments performed at the time of study. These findings suggest that researchers frequently deal with normative and social issues but without necessarily labeling them as such, as the notion of de facto modulation (Fisher and Mahajan 2006) posits. Researchers are not accustomed to viewing their decisions from a normative perspective or discussing the normative aspects of decisions explicitly. Such broader issues were brought into focus by routinely asking different kinds of questions than those usually encountered in the midst of laboratory research: questions about the normative dimensions of lab practices, about researchers' personal moral concerns, about the possible longer term ethical, legal and social implications of research, and so forth (see also Table 2). Thus, the methods and techniques of MM can help render ethical and societal dimensions of research more visible to practitioners within the context of the laboratory. In addition to these kinds of discussions brought about by applying MM methods and techniques, several kinds of learning occurred as a result of the interactions. This speaks to the question of whether research participants perceived critical reflection on the broader socio-ethical context of their work to be relevant. --- Reflection 'Within' the System In several ways the iterative observation and feedback processes occasioned instances of first-order reflective learning, i.e., learning related to technological improvement and the improved achievement of the researcher's own interests. The regular occurrence of 'efficiency' discussions, probing for possible overlooked considerations or alternatives of a technical nature, on several occasions led to improvement of the technology or the improved achievement of the research participant's interests in the situation in which he or she was working. For instance, after observing R1A repeatedly preparing small amounts of stock solution for a gel, I asked whether making a bigger batch could save time. Efficiency discussions were a matter of trial and error: participants appreciated my effort, but had often thought about possible alternatives already. In other cases, my questions suggested new alternatives. Applying the protocol to a particular experiment that R2A was performing, we determined that there was an opportunity to identify a specific chemical compound involved in cell-to-cell communication. R2A was searching for the compound in a bottom-up fashion, by measuring cell reactivity to different candidate compounds. When I proposed a top-down experiment, determining the presence of the compound in a sample where the anticipated cell communication was already occurring, R2A replied: My supervisor decided to do it this way. Probably the current experiment was easiest …. But that might be the way to go, now that this doesn't work. Such efficiency discussions thus served a threefold purpose: they elucidated the details of the experiments; probed whether an outsider's perspective could occasion new research opportunities; and built trust, enhancing a sense of co-labor. When I asked R1D at some point whether our interactions led him to perceive new research opportunities, he said: [It happened] just now. Well, I have to look back, I have to think about what I've done every now and then, to tell you what I did, so to say. So that forces me to some kind of realization …. At the same time I've been working on a presentation for a work meeting. At that moment I also realize that knocking out those genes could well have more consequences than we think …. And then I started reading back, like what is the capacity of that transporter, and then I came across a calculating error …. So, on the one hand, you force me to think, and on the other hand a work meeting forces me to think. So … it comes from both sides so to say. These examples indicate that regular application of the protocol facilitated firstorder learning, although it is difficult to pinpoint precisely what triggers the learning process. R1D found his calculating error as a result of being ''forced to some kind of realization.'' Perhaps my questions instigated this realization process, or perhaps it emerged from thought processes developing in the researchers' minds as they explained their work to me. In any case, the collaborative process stimulated mutual learning. There were other instances of this kind of learning, such as when I was discussing one of the draft research overviews with R2A. Looking at the number of research lines he was simultaneously pursuing, he realized how much he had taken on, leading him to the conclusion that he needed to make decisions about which research lines to pursue and which ones to drop: … it's a good following of the process …. I think you can pretty much see how the thinking evolves, right? I mean, the first insertion, that was my supervisor's idea, and then I came up with other stuff, and we get to the point where I'm thinking about stuff that is not even cyanobacteria genes, but something else. When I enquired later about the relevance of our discussion, he commented that he had never given research planning much thought, but saw the value of it now: For me that was the most important point, that I see how much I have to do, or have done, or how sometimes stuff gets entangled with other stuff if you never realize that things are related. Then you end up with a contest, and entrepreneurship, and things which you never thought about, and then … It's also fun to see how you have four lanes, or forks, and then one of them stops, because you're trying to advance the other one, and try to keep all of them running at the same time. Apart from efficiency discussions, considerations of a more explicitly normative nature in some cases led to changes in lab practice. For instance, several research participants who wore two plastic gloves to prevent getting acrylamide on their skin, would subsequently open a cupboard without first removing one of the gloves. When invited to present my findings to the research group at the final lab meeting I attended, I noted this lack of compliance with environmental health and safety regulations, feeding back my observation. The example sparked a hefty debate. Some researchers in the group felt strongly about complying with such regulations, particularly with regard to wearing lab coats, even though no one seemed to ever wear them. A few days later I received unsolicited news that several lab members had now started wearing lab coats again: Apparently, the presence of an outsider in the lab enabled a change in laboratory practice, as a result of rendering explicit and discussing the latent moral considerations of lab practitioners, particularly the 'recognition' (quite literally) of personal safety and well-being as a moral value. As this behavioral change illustrates, laboratory-based, collaborative work that was structured by MM was able to accomplish what regulations up to that point could not. Along with the other examples cited, it also confirms that MM can encourage first-order reflective learning by elucidating and enhancing laboratory decisions, whether aimed at improving the technology (a more efficient experimental setup, less time-consuming procedures) or achieving one's own interests (better research planning, compliance to existing regulations). Such reflection 'within' the system of course has value, but more encompassing reflection and learning, such as called for in the ethics of science and technology, would go beyond issues of compliance and improvement and would enhance the capacity of scientists and engineers to reflect on the broader socio-ethical context of their work and the reasons for the regulations in the first place. It would require 'broad and deep' learning (Schot and Rip 1997, p. 257), including second-order reflection on the background theories and value systems of the research context in which researchers operate. --- Reflecting 'on' the System In addition to microethical considerations, broader social and ethical dimensions of research were also regularly discussed during protocol meetings. One example of second-order reflective learning relates to the moral dimensions of genetic engineering. R1D at one point considered integrating a heterologous gene in the micro-organism with which he was working. He faced a choice between integrating a human gene and a mouse gene, both of which fulfilled the required characteristics. Discussing the choice with his supervisors, he invoked a range of technical considerations such as substrate specificity, affinity, capacity, availability of a plasmid and scientific novelty. The question of whether integrating a human gene would be morally acceptable was not discussed. Still, R1D expressed his moral reservations during one of the protocol meetings: R1D: I'm cloning a mouse gene, because … I decided like I'm not going to do a human gene. At least, there was a choice between human and mouse, well, then I'll go for mouse, that's a bit … safer. I subsequently probed R1D for the moral arguments he might have: Me: Why would that matter? A gene is a gene, right? A sequence of base pairs that you can reproduce synthetically. R1D: It's an image-thing. Practically, pieces of DNA from one organism work better than others, and synthetic genes don't always work optimally, probably because of interaction with the genome. Where it comes from is important, it's a bit … ethical. The DNA is still from that person. You put a piece of human in a micro-organism. I would have less difficulty if we would synthesize the DNA based on the sequence of a human fragment of DNA. R1D's response included some morally relevant dimensions. Beyond the practical consideration that ''pieces of DNA from one organism work better than others, and synthetic genes don't always work optimally'', he showed awareness of possible issues in relation to public concern by saying that ''it's an image thing''. He also expressed a moral value with respect to the integrity of the human genome: ''You put a piece of human in a micro-organism.'' His response led us to explore each of these dimensions further. The 'practical consideration' prompted discussion about reductionism: if genes are nothing more than strings of nucleotides, then why would synthetic genes not work optimally? In addition to further practical considerations (synthetically produced genes may have overlooked point mutations for example), we considered the background assumptions behind genetic engineering (the assumption that genes express proteins may turn out to be more complicated than expected due to unknown gene-gene interactions in the living system). The potential for public concern led to a discussion on how to address public concerns about genetic modification. From the possible moral values involved in the acceptability of using genomic material of human origin came discussion of deontological and utilitarian views in ethical decision making and the question of normative pluralism. Evaluating the relevance of these discussions at a later stage, R1D commented: R1D: I had given it some thought subconsciously, but I never really gave it careful thought …. Ethics can be very boring, until you reach dangerous territory, and then it becomes fun. This response suggests that the perceived relevance of ethical issues for researchers increases when discussed in relation to concrete situations and, furthermore, that their discussion in close proximity to the research activities that occasioned them may expand the kinds of considerations that researchers invoke when making morally relevant decisions. These are moments when the embedded ethicist can introduce broader perspectives and invoke theories from other ways of knowing while maintaining a direct bearing on the research at hand. There were numerous occasions for bringing a broader normative perspective to bear on the work done in the laboratory during the lab studies, for example on the regulation of research on genetically modified organisms, intellectual property and the ethics of promising. Another example of second-order learning occurred when discussing synthetic biology. While regularly ordering synthetic genes from chemical suppliers, research participants did not see their own work as being related to synthetic biology, nor to the ongoing debates on synthetic biology in ethics and the social sciences. Upon learning that R1D had ordered a synthetic gene I asked: Me: Would you call this synthetic biology? R1D: That depends. What is synthetic biology? Much of what is now called synthetic biology resembles what we do: putting a piece of synthetic DNA in a host. But I think synthetic biology is making all components synthetically …. Really to develop a cell from scratch might take another twenty years. R1D did not consider normative questions on the desirability of building cells from scratch to be relevant because of the practical complexities involved and the long time span before that vision might become a reality, whereupon I invited him to take a historical perspective. I referred to the progress that was made in molecular biology in recent decades, and how we probably would not have predicted 20 years ago that ordering a synthetic gene would be a standard procedure by 2010. I invited him to reflect on recent developments from this broader perspective, where 20 years is just around the corner. R1D: Then you would need to think about the use, or the goal. If you can build a cell, then you can build other things as well. We shouldn't go in the direction of synthetic higher organisms. There's always a risk that others move in the wrong direction. You shouldn't be using it for other purposes. It's like a knife: you can use it for good or for bad …. That's why we should maybe think about these things. Then there has to be extra regulation. Taking the longer-term perspective that ethicists and social scientists may take when reflecting on new developments such as synthetic biology, R1D started to think about his research in a markedly different way. By contemplating the longterm impacts of his work, he started to reflect on the broader purpose and potential outcomes of the developments of which his own work was a part, acknowledging the relevance of broader reflection. A third example of second-order learning concerns the social relevance of research. Questions concerning the future use of research outcomes were regularly discussed in each of the studies. Responses from all eight of the research participants to the two questions on social relevance featured in the pre-interviews shared a similar ambiguity. All participants responded positively to the first question: does society benefit from research? C1A: One of the main goals is that society benefits, from any research. It's not just a fun thing we're doing here. R2A: I wouldn't see what would be the point otherwise. If it would not help the rest, if that's the reason, than usually … Society should benefit; what would be the point otherwise? While being convinced of the general societal benefits flowing from scientific research, participants had more difficulty in predicting the possible benefits of their own research projects in response to the more concrete follow-up question: does society benefit from your research? C1A: I hope so. It's not my immediate goal; I haven't thought much about it. What I'm doing is basic research; this is probably a little bit far away from … What I'm doing is too far away. R1A: Honestly, I don't see any significant contribution, no. Maybe there is very slightly, slightly, indirectly, related to contributing ideas, maybe there is some technology … But otherwise, the result, for us researchers, we're excited but for other people, who cares? Wanting to pursue this perceived discrepancy between the general benefits of research and the specific benefits of individual research projects, I revisited the question of social relevance throughout each of the studies. Research participants responded in a similar fashion: a general picture emerged in which the ultimate benefits of research cannot and should not be accurately predicted. Participants gave several historical examples of knowledge flowing from basic research that only much later turned out to have practical use like the invention of the light bulb, penicillin or X-radiation, and concluded that unrestrained basic academic research is ultimately more likely to increase the possibility of socially relevant applications than directly demanding social relevance. Increasing calls for social relevance were therefore seen to pose a danger to scientific progress, and ultimately to societal progress, by stifling the innovative power of research: R1D: If you invest more in society-improvement, then the learning curve of science will become less steep. So … in the end it's less good for science … And in the end maybe also for society … in the long term. Interestingly, most of the research projects under study relied predominantly on funding from private organizations and were strongly driven by the need to deliver practical applications. When I questioned the amount of freedom involved in privately funded research, research participants readily acknowledged that their freedom is limited because of the expectations of the private investor. They saw this as the inevitable result of decreases in government funding: the only way for a research group to survive is by strengthening links with private industry. But while acknowledging that this shift in funding mechanisms limited their academic freedom, they continued to invoke the principle of unrestrained academic research to argue against calls for social relevance. Their background assumptions and value systems were in tension with recent changes in funding mechanisms. I subsequently tried to challenge their assumptions by first assuming them: supposing that one cannot predict the societal benefits flowing from research, and therefore academic research should be unrestrained, then how should a private investor determine which types of research to fund, given that funding sources are necessarily limited? Me: The question is: how do you make the decisions whether I should fund genetic modification of cyanobacteria, or whether I should maybe fund your colleagues who do evolutionary growth of cyanobacteria? R2A: That's why the, well the way that I thought is that politicians are the voice of the people, and those are the ones that automatically decide who gets the money, because they should have, they should know, what people want. So if people want cleaner fuels, then they give money to cleaner fuel. If people wanted better dogs, than they would find someone else. I think it's driven like that. To press the question, I would ask how the research participants would decide which research to authorize if they were a policy maker. R2A took recourse in a process of democratic decision making: R2A: Right, I guess the policy has to be made, [based] on the average of what people think …. [T]he policy [should not] be made on the thinking of one person only, but on what most people think. Me: But how about if big masses of people, like in Europe, say we don't want any genetic modification? Would you say, well, that's the majority vote, I'll just quit my job and find another? R2A: Probably not like that. But … I tend to be objective on those sorts of issues, so … Someone who can prove to me that that was the best decision, I would follow it. If someone would have a good argument I probably would … not quit my job, but find a different approach. I guess, I don't know. Such discussions thus problematized the unquestioned assumption that the demand for societal relevance hampers societal benefit. Research participants realized that some kind of demarcation criterion was needed to determine which research to fund, only to realize that this would involve measuring the value of knowledge as a function of some kind of external relevance, contradicting their original assumption that the utility of research cannot be predicted. The MM feedback mechanisms allowed for attending to broader questions as they impinge on the daily work of researchers, and pointing to possible tensions and ambiguities in research participants' responses. The value of these 'second-order' discussions lies not so much in having motivated directly observable changes in practice, but in the fact that participants engaged in critical reflection on the broader socio-ethical context of their work. Participants observed the ambiguity in their initial responses, realized that some criterion of relevance is needed 'in the real world' to determine what projects to authorize, and showed interest in reflecting on it in more nuanced ways: R1D: Yeah, you pull … away from the science a little, you put [the science] in a somewhat different perspective, more like … You look at science as a society so to say, where all kinds of things happen. R2D: What I think is useful is that one can indeed think about what kind of societal interest is involved when someone does this kind of research …. I think it's really interesting that people will start thinking about the use much more. These findings suggest that participants began to reflect in new ways on the underlying background theories and value systems operative in research. By challenging unquestioned assumptions, discussing what future applications could come out of the research, and sharing different visions on the role of science in society, the socio-ethical context came to life within the context of researchsomething that participants indicated not having experienced before, neither through their 'ethics and society' curriculum nor ethically-oriented funding requirements. Research participants indicated that the ongoing discussions during and alongside the actual conduct of research did not hamper, but instead added value to the research process in several ways. In the words of R1D, 'stepping into the helicopter' could serve as a guide to research planning, to identify overlooked opportunities, to relate lab research to its broader policy contexts, and to uncover latent normative issues. When during the post-interview I asked R1D whether he thought the study was useful to him, he replied: … everybody should perhaps reserve free space in their agendas every now and then, stop all experiments … and think …. Maybe you could … Should one integrate this in each and every PhD project? That someone from outside the faculty comes along, and you need to account for your actions towards that person. And the guy sitting in front of you would only have to ask: why? Why this? Why that? Couldn't you do that differently? And how does it work? --- Discussion These experiences suggest that the broader socio-ethical dimensions of research were rendered more visible within the research context and that research participants perceived such broader reflection to be relevant. MM served to encourage researchers to address the socio-ethical context of their work through collaboration and in real time. The lab studies aligned with the objective of realtime technology assessment to ''provide an explicit mechanism for observing, critiquing, and influencing social values as they become embedded in innovations'' (Guston and Sarewitz 2002, p. 94) while adopting the overtly normative standpoint that researchers should engage in critical reflection. Like the MM/STIR pilot study (Fisher 2007), these studies helped bring out latent ethical and societal dimensions of research, rendering explicit considerations that hitherto remained implicit, at a time when they could influence researchers' decision-making. Unlike the pilot study, they also aimed to introduce relevant socio-ethical knowledge and perspectives, and initiate discussion of specific moral questions as they arise in the laboratory context. As Ibo Van de Poel and Peter-Paul Verbeek note: Synergy between engineering ethics and STS … could result in an empirical and reflexive research, which is empirically informed and critically contextualizes the moral questions it is asking but at the same time does not shy away from the effort to actually answer them. (Van de Poel and Verbeek 2006, p. 234) The approach I adopted in these studies is not morally agnostic. It invokes the procedural norm that researchers have a moral obligation to critically reflect on their research. Yet a commitment to such 'deliberative modulation' does not require the embedded humanist to enter the laboratory with a predetermined set of substantive norms; as the laboratory engagement experiences made abundantly clear, the content of critical reflection can only emerge as a result of situated interactions over time. Such collaborative, situated critical reflection combines different ways of thinking and knowing: those of the laboratory researcher and those of the embedded social researcher (Gorman et al. 2009). It instilled a sense of urgency, concreteness and relevance to research participants that differs essentially from reading about them in a textbook, for example. It also supports early detection and warning signals of the ethical valence of research outcomes that may otherwise go unnoticed. Additionally, MM can take a more focused (and less speculative) approach towards ethical reflection that could lead to more meaningful interactions between scientists and ethicists (cf. Nordmann and Rip 2009). Note however that the sample size of these lab studies cautions against overgeneralizing: the results need to be compared with other findings to confirm or refute these observations. The perceived value of second-order reflective learning proceeds by way of the perceived value of first-order learning, of improving the achievement of one's own interests. During each study's duration, initial reticence from research participants turned into enthusiasm for discussing both the progress and the broader aspects of their research. Given that 'rethinking' knowledge production in research systems depends on the willingness of research communities to rethink their own practices, such collaborative approaches could be more effective than external forms of critique. Of course, this dependency on research participants' willingness to engage implies certain limitations too. While the 'voluntaristic' approach towards collaborative engagement can enhance researchers' critical reflection, it also builds an asymmetrical relation between the researchers and the embedded scholar. As a guest in the research group, the latter is dependent on the acceptance and endorsement of the hosts, and critical views cannot be allowed to disrupt good relationships. This may not be a problem if the collaboration is seen by research participants to be conducive to first-order learning, but could become a problem when there is strong normative disagreement. In those cases, the embedded ethicist has no 'jurisdiction' (Anthony Stavrianakis, personal communication). The need to respect operative conditions and dynamics within the laboratory inevitably limits the range of possible critiques. Furthermore, the collaborations are constrained by their social and institutional environment. Existing, internal responsibilities often take precedence over a researcher's broader social responsibilities. That said, MM has been found to enhance the critical reflection of research participants on the socio-ethical context of their work. Such reflection is arguably needed if other social and ethical programs-upstream engagement, technology assessment, codes of conduct, etc.-are to be successful. The reflective learning documented here provides modest indications of Webster's vision of STS, that is, helping to set the terms on which science might be accorded a socially warranted status that in important ways is distinct from, critical of and supersedes the conventional (scientistic) sense in which science has been legitimated (Webster 2007, p. 460). This vision must be tempered by the danger of the STS practitioner becoming an ''integral co-productionist element of the very structures of power and culture which might be just what STS should be challenging'' (Wynne 2007, p. 494). This is the real challenge for the embedded researcher: becoming part of the convergence of goals, strategies and configurations of the laboratory insofar as it provides access to different registers of justification (Arie Rip, personal communication), while not losing sight of the original intentions behind one's entrance into the laboratory. Walking the fine line between co-labor and critique may allow different voices to be heard at the heart of the R&D enterprise, tapping potentials for learning and change that could prove significant. --- Conclusion The laboratory engagement studies described here provide an indication of the potential for interdisciplinary collaborations to enhance the critical reflection of scientists and engineers, albeit in a relatively small sample size. They demonstrate that broader socio-ethical dimensions can be productively engaged during laboratory research. Midstream modulation was found to engender fruitful and meaningful collaborations between social and natural scientists, encouraging second-order reflective learning while respecting the lived morality of research practitioners. Not only did it help make broader socio-ethical issues more visible in the lab, it encouraged research participants to critically reflect on these broader issues. Contrary to their initial claims, participants came to acknowledge that broader socio-ethical dimensions permeated their research. Importantly, first-order learning seems to be a prerequisite for the possibility of second-order learning: research participants' willingness to engage in critical reflection on the broader socio-ethical context of research was seen to be dependent on their perception that the collaboration also improved the achievement of their own (research) interests. The ongoing observation-based feedback of the midstream modulation framework and STIR protocol allowed the laboratory researchers and embedded ethicist to build collaborative capacities and establish conditions for productive reflection on ethical and social considerations. While what counts as an ethical issue is to some extent a negotiation between the individual collaborators, the procedural norm of reflective learning can guide both practitioners as they deliberatively integrate socio-ethical assessment with ongoing and future research directions.

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Impacts of a documentary on the daily lives of mothers and children with disabilities: an analysis of cine debates.

The article analyzes the impact of a documentary on the daily lives of mothers and children with disabilities, exhibited at conferences, festivals, universities and schools in Brazil, Colombia and Japan. Produced by film and health professionals, social scientists and a women's network, the feature film "A special day" was awarded at Assim Vivemos VI International Disability Film Festival (2013-2014). The objective is to analyze the impact of the film and its diffusion among professionals and students from health and education areas. We adopted a methodology of cine debates that were recorded, transcribed and coded. The circuit toured 22 locations with one or more exhibitions for 3.370 people, of which nine presentations were analyzed. Our interpretations were guided by the notions as life account, biographical pact, imaginary and social representation. We analyzed gender issues, family and maternal care; reactions, adaptations and life after the diagnosis of disabilities; discrimination and prejudice; school and inclusion. The study showed that the communicative and expressive power of film becomes a powerful social technology to address gender, maternity and disability as an important and strategic issue for public health in the country.

Introduction This article aims to analyze the impact of a documentary showing the daily routine of ten mothers in caring for their children with disabilities, exhibited in cine debates over two years in Brazil, Colombia and Japan to audiences of health and education professionals and students. The development and production of this film were based on two national and international research projects, involving science and cinema professionals, family members and the professional staff of institutions in the health and disability area, with the support of the Japan International Cooperation Agency -JICA and the Research Support Foundation of Rio de Janeiro (Fundação de Amparo à Pesquisa do Estado do Rio de Janeiro -Faperj). The film takes a new look at aspects of the mothers' lives and how they face up to the challenges posed by the disabilities. As a contemporary documentary, through various daily routines and thematic blocks, it joins narratives, reflections, photos and scenes, past and present, forming a lively and dynamic mosaic that encourages new outlooks. In this analysis, we will show how the communicative and expressive force of audiovisual language becomes a powerful social technology for developing a relevant and strategic theme for public health in Brazil. According to Nóvoa et al. 1 , there is a close link between cinema and history, animated image and reality. One can sense the weight of the past and be attracted by the novelty the story evokes. Pires and Silva 2 speak of cinema as a cultural artifact that projects itself as a kind of discourse and contributes to the construction of social meanings, helping to disseminate new and inter-subjective knowledge. Cinema as art is capable of shaping opinions, eliciting reflection, and can be used as a strategy for demystifying prejudice and taboos 3 . Codato 4 considers that the main purpose of image in the cinema is to seduce the eye and seek the interpretation, the sense and the meaning in the spectator. Here, cinema is treated simultaneously as an object and instrument of research. As a produced object, it provides an approximation to the real world, to the concerns and stories of anonymous lives, helping to depict the daily routine and life in societies. As an instrument, it becomes a method, a way of perceiving and understanding the world, dealing with reality, revealing a society's way of thinking and its representations. Observed and analyzed, it evokes ways of understanding, communicating and being in touch with oneself and others 5 . Thus the use of cine debates constitutes a creative methodology for applied research in social and human sciences. According to Fróis 6 , in a documentary film, the filmmaker winds up by recreating or reinterpreting the reality he portrays, because the genre allows him to act like a creative artist. Farina 7 maintains that a documentary should be understood as an original production, with conceptual choices, theoretical and technical, of framework, characters and organization of the final production. The author and director play an important role in the way in which the facts are portrayed, hovering on the thin line between fiction and reality. As Mascarello 8 sees it, if, on the one side, the contemporary documentary "constructs a flight line from the surfeit of reality that overwhelms us, on the other, it turns towards a 'reality' that escapes us and challenges us in its inextricable exteriority". In this respect, Farina 7 concluded, a documentary production is not a "reflection of the actual", but a collection of material that stimulates social debates based on a slice of reality. This film, produced and handled as a social technology strategy, aims to challenge stereotyped and reified views of the families, the mothers and the disabilities, focusing on the differences of gender and the role the woman plays in this life path full of stumbling blocks and challenges. We start from the assumption that cinema as art, in particular the film in question, affects the social imaginary, informs about the daily lives of the mothers and children, and is also a powerful tool for tackling prejudice and discrimination. According to Pires and Silva 2 , and based on Walter Benjamin 9 , imagistically, film facilitates work on processes of sociocultural alienation and enables the building of new knowledge, initiation of new discourse and, through dialog, reaches subjects and promotes intersubjective processes. From recollections of the pregnancy, the initial and later difficulties of the child and communication of the diagnosis to the challenges of infanto-juvenile development, the families come up against uncertainties, the couple faces emotional difficulties in assimilating the news that initiates a difference, the mother tends to assume the daily tasks of intensive care, and the professionals have difficulty in giving the diagnosis, guiding and providing support in the most difficult stages of the life 10 . The coldness and silence, the impersonal and distant contact, the omission of information reveal in the expressions of the health or education professionals that the problem is worrying and serious, the child is not go-ing to develop "as expected" and that the school will have difficulties in receiving it 11,12 . On account of the disability, expectations concerning the child's future start to unravel and a fatalistic and prejudiced tendency to appear on the part of professions in the face of the parents' difficulties 11 , shot through with feelings of anguish, despair, fear, sadness and shame, particularly affecting the mothers, not always free to cry and whose pain is barely understood, with many seeing family members and close friends drift away 13 . In Western and Eastern societies, domestic tasks and child care are women's responsibility. Thus, as the main carers, mothers are at risk of stress on account of the demanding daily routine in which they sacrifice their love life, social and professional lives, as a woman and wife 14 . Motherhood of a child with a disability is unique, imposes complex and challenging experiences, involves uncertainty about the future, unknown and unpredictable, requires specialized help, a support network and social support 12,15 . There is much we need to understand in our civilization about the necessity for family, technical, social and religious support when a child's limitations are substantial. Based on the idea that society in general is unaware of the challenges and barriers faced by families and children with disabilities in the course of their development and social inclusion, the feature-length film "A special day" emphases the mothers' experience of caring and their relationship with their special needs children, the family, school and society. The documentary gives an account of children, young people and adults with various types of disability, neurological syndromes and autism, to a severe, moderate or slight degree. The circuit of cine debates, with exhibitions and reflections on the film, recorded the words and emotions of the audiences; and, in the words of Ramos 5 , like a "magic mirror", the film revealed in body language, gestures and feelings, verbal and non-verbal communication what it is like to "care for a child with a disability, from morning to night", through the eyes of the mother, woman and wife. Our objective in this article is to analyze the impact of the film and its distribution to audiences of health and education professionals. --- Methodology First phase, with financing by JICA (2006-2008) -Amorim et al. 16 16 produced a first documentary, "Above the Waves" (28 minutes), based on interviews with mothers and children with intellectual disability and autism in Brazil, Colombia, Malaysia and Thailand. In the video, they draw attention to the similarity of the women's experience, despite cultural differences. On showing the video to mothers of "special" children in Brazil, we were surprised by how they felt free to speak, exchange, share and recall their experiences. Second phase with JICA financing (2011-2013) -This result lead us to invest in a second Brazilian documentary for use as a social technology tool for tackling disability in collective health. Through the "Very Special Women Network" project, sponsored by JICA, the filmmaker Yuri Amorim, assisted by Annibal Amorim 17 , produced the documentary A Special Day (80 minutes), in partnership with the Instituto Educateur, Kinera Produções, the Centro de Estimulação e Psicopedagogia Criart and their families. The interviews and the daily routines were filmed after definition of the guidelines for the script in six meetings between the network of women, the professionals and the filmmaker. Third phase with Faperj financing (2013-2016) -Cavalcante 18 set up the project Gênero e Deficiência retratados no cinema: biografias em debate ("Gender and Disability portrayed in the cinema: biographies under debate"), sent to the Office of the Vice-President for Environment, Attention to and Promotion of Health/Oswaldo Cruz Foundation, supported by the Instituto Educateur, Kinera Produções and Criart, as well as the Veiga Almeida University/Integrated Social Practices Laboratory, of the Federal University of Rio de Janeiro/National Museum. Thus funds were raised for post-production of the film A special day, distribution and organization of up to ten cine debates in schools, universities and congresses, with a view to raising awareness among health and education professionals and the public in general. Content of the film A special day -The feature-length film introduces different ways of looking at gender and disability. It accords visibility to the plurality of experiences that accompany the arrival of a child with a disability, communication of the diagnosis, the impact of the news on the family and the disability in the lives of the women, mothers, wives and professionals, the adjustments they go through, their pain and achievements, what they learn, what the children with disabilities teach them and what they have to say to the world about their experience. It starts with the question: "If your life was a film, what could not be left out?"; and ends with the thought: "What would be a special day for you?", when the notion "special" used by the mothers, on referring to their children, acquires singular meanings and concepts in plays on words. Organization and systematization of cine debates -Exchanges were organized with events that permitted exhibition of the film in eight Brazilian towns and in Bogota/Colombia and Tokyo/Japan. A total of 22 cine debates were held, and nine meetings with health and education professionals and students from primary to post-graduate level were recorded in full. Debates were held after each showing, with the participation of the mothers who took part in the film, the filmmaker, social scientists or professionals and educators, who enlivened the exchange with the audience. The public's reactions were documented in films and audio recordings, transcribed and organized in an analytical table showing the subjects, what was said and the relevance attributed to the film. Analysis of the data -The transcriptions were grouped by events and exhibitions linked to health and education and the material was organized in narrative units, by subject and associated ideas. A cross reading enabled an analysis of relevant categories, taking into account the audiences and their particularities. Field impressions, theoretical reflections on documentary cinema, disability and family, gender and motherhood, as well as concepts that guided the interpretation of narrative and social contexts: Daniel Bertaux's 19 idea of a "life story", Philippe Lejeune's 20 "biographical pact", the "social imaginary", approximating cinema and history, according to Nóvoa et al. 1 , and the notion of "social representation" for Codato 4 . We started with Daniel Bertaux's 19 notion of "life story", which considers the story of a life as told by the person who lived it. What appears to be the basis is merely one facet of the person. As the documentary combined a number of "life stories", with different profiles, the resulting diversity was such that the contrast between the reports brought about a saturation point that renders the selection representative. Even faced with a "biographical pact" or an "authenticity pact", as Philippe Lejeune 20 points out, we will be heedful of the relativity of the events and the adventure of the art of speaking about oneself. As Nóvoa et al. 1 puts it, in the close relationship between cinema and history we perceive the "social imaginary", confirming the socio-histories as representations and their anchoring in a sociocultural context. In Codato's 4 view, film enters into a dialog with the "social representations" in their historic, social and aesthetic bias, in the power of the cinematographic image, revealing mechanisms that lie behind the impression of reality. The representations stimulate reflections based on the images and the relationships that one human being establishes with another. The limitations of the study lie in what it was possible to record and compile of a wide universe, in the analysis of words taken out of their conversational environments and in the risk of reducing plural and polysemic interpretations attributed by social players. Taking these points into account, the advantages of the analysis reside in the opportunity to compile and analyze content evoked by exhibition of the film and the debate, differentiating by target audience and the most expressive themes and emphasis, and as far as possible understanding the differences of discursive contexts and the atmosphere noted. --- Results and Discussions From the initial aim of distributing the film A special day and holding eight to ten cine debates, noting the film's impact on health and education professionals and students, it's fair to say that we have progressed further than expected, in that the film seems to have "grown its own legs" and is blazing the trail. One showing aroused interest in further showings, and the congresses and events provided opportunities for the protagonist mothers, production team and researchers to participate. Schools and universities, professionals and students became interested in seeing the documentary and helping to organize the debates. The work involved with the film exceeded expectations and it was therefore necessary to establish a profile for the events that would be closely monitored, filmed, transcribed and analyzed. We will first present the circuit of cine debates in Rio de Janeiro, in Brazilian states and in two countries that have partnered us in various stages of previous projects, Japan and Colombia. We analyzed cine debates held at two scientific events, two health education graduation and post-graduation events, two primary school and two high school meetings and one focusing on public policies. We will now present reflections on the impact of the cine debates by group analyzed. (1) Health professionals at scientific events; (2) Health professionals and graduate and post-graduate students; (3) Primary education teachers and students; (4) High school teachers and students. Between August 2013 and March 2016, as shown in Table 1, the A special day film circuit included one or more showings in eight Brazilian towns (Teresina, João Pessoa, Manaus, Belo Horizonte, Rio de Janeiro, São Paulo, Brasília, Santa Catarina), in Tokyo, Japan and Bogota, Colombia. Specifically in Rio de Janeiro, where we were able to monitor it more closely, it was shown in 13 different venues. The film was discussed in seven congresses, seminars and forums, two international, three national and two regional, an estimated audience of 790 people. The major events that exhibited it considered the theme of attention to health, mental health, disability, autism, occupational therapy and humanization, with the emphasis on human rights, citizenship and diversity. Included in the 2nd ABRASME Film Festival Vida em Foco (Life in Focus), the documentary A special day followed an itinerant exhibition circuit through the Amazonian riverside communities in 2014, at the end of the 4th Brazilian Mental Health Congress, giving visibility to the various productions there. The film's initial landmark was its first showing, at the 1st International Healthcare Congress, in Teresina (PI), when it still had a running time of 90 minutes. In response to audience feedback, the filmmaker and director fine-tuned and cut it to achieve a final running time of 80 minutes, and this version competed and was selected in its first festival. In the Assim Vivemos (How we Live) 6th Disability Film Festival, held at the Banco do Brasil Cultural Center between 2013 and 2014, A special day was exhibited six times in Rio de Janeiro, three in São Paulo and three in Brasilia, with a debate in each city. The documentary was considered one of the five best of 26 films from 17 countries (Australia, the United Kingdom, Canada, Israel, Russia, Brazil, Holland, France, Norway, Spain, Scotland, Iran, Belarus, Bulgaria, Poland, Germany and the United States), awarded the prize Mulheres Guerreiras ("Warrior Women") by the jury, and "best film" by public vote at the end of the circuit. As shown in Table 1, the film was exhibited at eight festivals and events, in institutions and companies (OAB, SESC, SESI, Petrobras) and film festivals (Psicodália Festival), to an estimated audience of 1,110 people. Finally, the film was shown in cine debates in universities and public and private schools in Rio, to an audience of 1,470 people. In all, between congresses, seminars, festivals, events, universities and schools, the majority in Rio, the film was exhibited to some 3,370 people -health and rehabilitation professionals, family members, people with disabilities, graduate and post-graduate students and professors, primary and high school teachers and students. The following analysis includes reflections on the film in Brazil and Colombia. We draw attention to the interest of a professor from the Social Service department of Japan Women's University, who included the film in her classroom methodology. --- Cine debates between health and education professionals (1) Health professionals at scientific events: For public health professionals, the film produced an overall view of those who look from the outside, a new way of seeing after an empathetic approach and a change of view concerning the professional way of acting. It presents an overall and plural view of what it means "to be the mother of a child with a disability", casts a sensitive eye on the mothers and carers, gives a voice to those who undergo the experience. The film gives depth, by reproducing words taken from daily lives. There were mothers in the audience during the debate, who gave their views: "It was extraordinary, the film portrayed what we experience, it showed our expectations and sorrows"; and siblings: "My mother had to learn to be a nurse, a teacher, and to fulfill various social roles to help my disabled brother". It emphatically brought some people closer to the reality of these mothers of "special" children, in comparison with other mothers, generated a recognition of the investment in the child and their resilient attitudes. One aspect of the film that caught a social scientist's attention was "the role of affection", something that requires a major psychic effort in extreme situations. He therefore concluded that these families are "special" in that they sustain affection that is demanding on a daily basis and is often given without support, without other structures, with no chance to catch a breath and recover vitality. It was striking that over half of the stories analyzed stressed that the film caused a change of view in relation to professional practice, making professionals rethink their way of seeing, hearing, perceiving, feeling and acting: "Professional people need to know how to share and hear, and to shed the fear of being creative". They acknowledged the importance of the exchange of views between mothers and professionals, the need to act in a more integrated way with the subject and their family, the importance of a support network for mothers and carers: "As a nurse, I feel guilty, because I never saw this side of things, I shall provide more help and see how the mother feels". This proves that, as stated by Naujorks et al. 21 , cinema is a powerful pedagogical tool: "The actual representations of people with disabilities can be redefined, repeated, or brought up for discussion, expanding the possibilities of the individual and collective imaginary of people with and without disabilities in relation to those with disabilities". --- Target public --- Audience (2) Health professionals and graduate and post-graduate students: The importance of listening to families building strategies that meet their needs, the importance of a "breathing space" to enable a mother to be a woman, as well as the mother of a disabled child: "The film showed us a carer's strength and energy. Their sense of life has changed, but they have to find strength to cope with the fate the world has reserved for them in order to live". The importance of empowering mothers was emphasized: "We have to strengthen the women, because an empowered woman cares for the family, will track down resources, talk to the husband and mobilize the community, so we will be reinforcing the network". The specific function of gender is considered, the woman's role in the family as the one who provides daily help for the more vulnerable members and has a strategic caring role: "The idea is not to cut out the father, the siblings or even the grandfather, but to understand that the mother has a specific role because she's a woman, in most cases, the one who will provide care or abandon. So, to prepare for this situation, who should we strengthen? The woman?" A woman who manages to find a space to care for herself, as well as caring for others, will be contributing towards fulfilling her social role well and fighting a source of chronic stress. In the words of Neves and Cabral 22 : "Once empowered, a woman can demand her rights, fully exercise her citizenship, ensure quality care for the child, share decision-making with the professional who attend her sons and daughters and be effectively included in the caring process". The film presents situations in Brazil similar to those observed by professionals in Colombia -the similar incidence of abandonment by the fathers, the fear of dying and the worry about who will care for the child, the need to find strength to promote inclusion. For these reasons, the film was considered a model and an example of a way of acting with people with disabilities. As the film "Above the waves" shows, thematic similarities of the challenges for mothers and families are to be found in different cultures and societies. The advantage of film as art and social technology is to retrieve the subjects' experiences, the interaction between mothers and children, the carer's suffering, and to give visibility to the matter. "The documentary is beautiful, it shows the family life that we don't see", said one professional. The film shows one thing over and above the daily events of professional practice and research: "It's one thing for you, a researcher, to transcribe the mother's voice, and then interpreting it, but however much you effect the phenomenological epoché and reinterpret the words, it's you speaking, it's not her". The conclusion is therefore that: "when we stop to hear what she has to say, we realize how much we have to learn from these families, we're not the only experts, but we also have to learn and they need to act more as partners, we have to spend more time with them". On this point, the film gave rise to a very important consideration, a change of view and an understanding of the need to recognize the richness of the strategies these mothers and families create for facing up to the disability, the way in which they produce everyday knowledge that needs to be seen and better understood: "There are many more tools that are developed and that the health or rehabilitation professionals don't see because they only recognize their own tools, not those built by the families". This discovery of families as builders of a stock of knowledge, alongside the traditional scientific knowledge, could result in advances: "We need to open up a field of investigation to find out more about the tools built by these families; and how they can suggest tools, think of tools, in other words, involve them in this construction of knowledge and the state of knowing". In the book Pessoas Muito Especiais (Very Special People), Cavalcante 12 reveals a wide variety of experiences, strategies, practices, tools and knowledge developed by these families. However, the documentary is a quicker way of evoking new viewpoints, confirming the art's importance for the production of knowledge: "The film makes us reflect (...) invites us to assume this social responsibility as health professionals, as public health workers". The cinema, as an art that gives wings to the social imaginary and stimulates transformation in social representations is highlighted by Silva, Nascimento and Silva 23 : "we understand cinema as an art that expresses a certain view of the world, with philosophical, aesthetic, ethical and educative content, that enables and favors different apprehensions of this reality situated in a historic-social context". (3) Primary education teachers and students: A school that stands out for its social and political participation and engagement, in both regular teaching and scholastic inclusion, was chosen to participate in this debate. There were two meetings, which also included some parents and guardians, held in a festive atmosphere. Among the relevant themes highlighted were differences of gender and motherhood, questions of school and professional practice, discrimination and prejudice and public policies. Attention focused on the impact on the life of the couples, the separations, the absent fathers, the mothers left alone and accompanied. The film shows the 'viewpoint of the mother, the woman, in interaction with the family; and learning about this feminine experience helps us to understand them. The mothers' lack of time for themselves was noted -how much they need the time to be a woman, how greatly they feel they are losing various rights of life and coexistence, of going to the doctor, sleeping, enjoying themselves and even the "right to die". As Falkenbach et al. 24 put it, "talking about and studying the matter of the disabilities can provide useful information, however it is living and coexistence with these people that can promote in-depth learning and new views". A number of educators who spoke recognized the importance of the school's and the families' participation in the children's development and inclusive education. On the other hand, the school's commitment to socialization, to fighting prejudice and respecting differences was also discussed. "The film give us a jolt. The school starts to think of itself as a challenge, that of not only receiving the child (with a disability), but of feeling itself called upon to go a step further -what strategies for developing this individual can the school propose to the family?". The film also lead educators to think about a change of attitude, seeking to find ways of giving the mothers more support: "I used to think that it was good to listen, but it's not enough, we need to develop strategies". There was also a change of outlook and posture, a search for another way of listening, more attention and care in building re-lationships, better sharing of the responsibilities, working together, teaching appreciation of life, expanding the debate in schools: "What does it mean to be in a relationship? What is the school's responsibility? What is the family's responsibility? (...) when we offer special needs teaching, we have to encourage full development, there has to be a pedagogical route". There was recognition of how the theme of discrimination and prejudice is constructed socially, of what the school so often contributes towards the social construction of the preconception of gender and of other social groups; and of how it needs to assume a role in the fight against discrimination, and to act on behalf of all. Schools need to reinforce the policies for fighting prejudice and respecting differences. (4) Secondary education teachers and students: A school with a normal curriculum visited the Raul Cortez theater twice to see the film A special day, taking 400 pupils, parents and educators each time. It was a special moment. As in every session, crying and sobbing were heard in the course of the film. Six of the ten mothers who participated in the film were present at the meeting, which lead to an enthusiastic debate and a euphoric experience in which the audience, mainly comprised of young people from the primary teacher training course, was able to put questions directly to the characters in the film. The students were advised to present their questions in writing and some used the microphone to ask questions directly. The questions didn't stop coming and it was impossible to keep up with even a tenth of what was asked. We compiled the questions, removing the repetitions and arriving at a total of 79 questions, 64.5% (49) of which were put directly to each of the mothers, personalizing the exchanges and the themes. The remaining 35.5% (27) were questions directed to the mothers as a group, with only three to the mediator. Three main themes interested the students and guided their queries: questions of gender, family and maternal care; reactions, adjustments and coexistence after diagnosis of the disability; school and prejudice. The mothers lead the debate and entered into direct exchanges with the audience. We highlight the words of one mother, whose daughter has a serious and progressive degenerative disease. Her words are a good illustration of the impact of a severe disability on a woman's life: "Everything is very hard, because when you are given a special child, they don't come with an instruction manual. You don't know how to deal with it or who to appeal to. And everything changes in your life, right? Your family life, your personal life, your working life (...)". As Fiamenghi Júnior and Messa 25 put it, "The parents of disabled children live with worry all their lives, from the baby's birth to old age, mainly due to the lack of institutions that can care for disabled people as they grow old". The depth and extent of this change and the impact on the woman's life, starting with the serious condition of a child with a disability 12,26,27 , are clear from this narrative: "Our vocabulary changes (...) But from that moment, the vocabulary becomes one of therapy, convulsion, medication and new treatment. And suddenly you stop being yourself, you're no longer R. You're A's mother. And that's how the health professionals call you for the treatment sessions: -A's mother and there comes a time when you no longer know yourself, you don't recognize yourself any more". This clearly shows the change in the life of a woman, mother, wife, professional person and the importance of a support network. "The quality of the support provided by the support networks renders the experience of motherhood less arduous; and the more effective the assistance to these women, the more confident they will be in caring for the child" 15 . --- Conclusion We saw from the words of professionals, educators and students that the film A special day impacts the public through the sensitive look at the little-known life experience of the mothers and the difficulties of the daily care, producing empathy for their hard reality and that of the disabled person and resulting in changes of perception. There are reflections on differences of gender, resilience, love, integral well-being, co-existence, respect, family, school, society and support network, from the carer's viewpoint. The feature-length film contrasts ten life stories, articulates various themes, perceptions and points of view, presents day-to-day situations based on life experiences and practices built, which not only clarify problems, difficulties, pain and suffering, but also point to ways of facing them, support, subjective and social tools that have been developed in the life cycle by women and families challenged by their child's disability. By giving visibility to the voices and experiences of the mothers, in the drama of their lives, it was possible to bring to light unknown information and the emotional, social and cultural strength of the warrior women who acquire life wisdom The film has been referred to as a model and example of how to act with disability, due to the similarity of experiences in different cultures and societies, such as Colombia and Japan; and also for revealing aspects of family life that escape the professional eye. More than showing the richness of experience of the mothers and their children, the film reveals that these families build tools for dealing with the disability, other than the professional tools, and this constitutes an expertise to be investigated and studied. Hearing the voice of these women, mothers, wives and professionals led the post-graduates to conclude that much is to be learnt from them, and that these mothers need to be more involved as partners in health care and the building of knowledge. Educators and primary and high school students were more struck by the family life experience, seeing the effects of the disability on the couple's life and the overload assumed by the woman and mother. The mothers' lack of time for themselves and how they need to receive more support called attention. The school party saw how the family could be more of a partner in the challenge of monitoring and teaching pupils with disabilities. The film "gives a nudge to schools" insofar as it shows that it is not enough to take in a special student, it is also necessary to welcome the family and support the mothers. The film prompts a change of view and posture, inviting an investment in the quality of the relations between family and school. It also give more visibility to the experiences of prejudice and discrimination, helping the school community to recognize itself as a social space that tends to reproduce stereotypes and that could work in a more conscious way to deconstruct prejudices and stigmas. Cinema as art stimulates faster transformations in the imaginary and produces new social representations, showing itself to be a high-impact technology. It evokes in-depth debates, produces a greater approximation of social realities and life experiences and also shows the differences of gender and promotes empathy and respect for the mothers and their children. The documentary A special day gave visibility to diverse experiences in the face of deficiency, showing that as a result of the extreme care, a woman profoundly changes her life and no longer recognizes herself, and it is thus crucial to expand support and increase the network of very special women. --- Collaborations FG Cavalcante, LF Lau, GF Barbosa, DLG Berlim, NC Menezes and DC Braga participated in both the cine debates and structuring of the article. FG Cavalcante, AC Amorim and YC Amorim cooperated in production of the film, the cine debates and revision of the article.

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THE GOVERNMENT OF CAMEROON AND THE ANGLOPHONE CIVIL SOCIETY CONSORTIUM: GLIMMERS TO THE CAMEROON ANGLOPHONE ARMED CONFLICT

After the reunification of Cameroon in 1961, some West Cameroonian political class began to cast their doubts on the centralized Federal System put in place. This system according to some Anglophones gave room for marginalization and assimilation of West Cameroon especially with the closure of its development agency. This somehow nursed grievances and in 2016, the bon a fide English Speaking Cameroonian lawyers and teachers rose up in a "peaceful civil disobedient protest" to express their disillusion, over the erosion of the Common Law Judicial System and the Anglo-Saxon Education System in Cameroon. This paper from this angle looks at the origin of the Consortium, Government position and the impact. The paper argues that, Government's responses and policies towards the corporate grievances and the ban on the Consortium laid the foundation of a radicalized armed conflict in the Anglophone region and within this dispensation; other discourse towards a lasting solution became valuable. The major instrument used for data collection was interviews, secondary literature, author's experience and a multidisciplinary approach to present the facts. This paper concludes that the failure to break even between the Government of Cameroon and the Cameroon Anglophone Civil Society Consortium (CACSC) introduced armed conflict with costly consequences.

INTRODUCTION The Cameroon Anglophone Civil Society Consortium (CACSC) emerged on the background of the Anglophone Problem. This can be traced from the colonial era. Following the defeat and ousting of the Germans out of their Kamerun Protectorate in 1916 (after the First World War), Britain were victorious partitioned German Kamerun Protectorate into two unequal halves. The French had four-fifth (4/5) and the British took a fifth (1/5) of the territory. The British for administrative imperatives divided her own part into British Southern Cameroons and British Northern Cameroons and administered it as an appendage to Nigeria. In February 1916 two diplomats Oliphant Lancelot of Britain and George Picot of France met in London and provisionally partitioned the territory in what came to be referred to as Oliphant-Picot Line. The line drawn on the map of Kamerun the former German Protectorate ran from Lake Chad in the North to the Mungo River in the South created a boundary between British and French spheres. On 10 th July 1919, the Milner-Simon Agreement settled the 1916 partition. In 1922, the League of Nations (LON) recognized the partition and the international boundaries that separated the two territories. 1 In the course of ruling the territories as Mandate B territories of LON, the French introduced the Policy of Assimilation in French Cameroon and the British on their part introduced the British system of Indirect Rule. Two distinct cultures and attitudes then developed. The people of British Southern Cameroons adopted the Anglo-Saxon culture and French Cameroon was introduced to the Centralized Republican System of administration tied to "Napoleonic Code". This greatly alienated the two territories in the areas of language, social attitudes and lifestyle, system of administration, education and judiciary system. 2 When French Cameroon achieved independence on 1 January 1960 as La Republique du Cameroun, British Southern Cameroons political atmosphere was still very tensed and characterized by political ideologies and shades. Due to the differences in the political path to follow between the leaders and main political parties at the time such as J.N. Foncha leading Kamerun Peoples Democratic Party (KNDP) and E.M.L.Endeley of Cameroon Peoples National Convention (CPNC) and One Kamerun (OK) under Nde Ntumazah, the United Nations organized a plebiscite in British Southern Cameroons. The territory had two options of vote either to gain independence in association with the Independent Federal Repuplic of Nigeria or voting to reunify with the Independent La Republique du Cameroun. Following the results of the UN organized plebiscite of 11 February 1961 in British Southern Cameroons, those for reunification won. According to Ebune, there was an overwhelming vote to gain independence by reunifying with their "brothers" of La Republique du Cameroun with 233,571 for against 97,741 votes for union with Nigeria. 3 Foncha's KNDP won 4 and by this victory, British Southern Cameroons reunified under an already independent La Republique du Cameroun. 5 Ngoh posits that the Foumban Constitutional Conference of July 1961 sealed the union of these two states with federation as the form of government which as best was to preserve the cultural values of Publisher: The USA Journals each state as well as their institutions. 6 On October 1, 1961, the Federal Republic came into existence with British Southern Cameroons regarded and called State of West Cameroon and La Republique du Cameroun called State of East Cameroon. However, postindependence developments and adjustments left the British Southern Cameroons with a series of politicoeconomic and social grievances as the constitutional agreements that were concluded at Foumban were gradually being scrapped off by the Francophone majority regimes and there was need for the Anglophone indigenous people to come together and act in civic space to address the situation. By 1961 in October, West Cameroonians had already been provoked with the appointment of J.C Ngoh as a Federal inspector answerable to the Yaoundé government of Amadou Ahidjo and many agitated. 7 Benard Folon in 1964 in his article titled "will we make or mar" enlightened the Anglophone community on the excessive use o of power by the Yaounde regime and called for liberty, democracy and equality and the rule of law. 8 A.N. Jua the Prime Minister of West Cameroon openly showed his opposition to the imposed Federal Inspector to West Cameroon and was out to preserve the West Cameroon identity. Albert Mukong another Anglophone Cameroonian through writing of petitions and other anti-government literature expressed his dissatisfaction to what the Anglophones went through. He organized meetings in order to draw the attention of the Anglophones on what was going on. In 1984 Mukong founded the Cameroon Anglophone Movement (CAM) which called for separation. According to Ngoh in 1972 Anglophone Cameroonians were challenged in their marginalization when the Federal structure was dismantled, 9 and prominent West Cameroonians protested and criticized the move publicly in the likes of Albert Mukong, Gorji Dinka and Bernard Fonlon. 10 Ngoh in another argument pointed out that in 1984, through the modification of the constitution's articles 1, 5, 7, 8, 26 and 34, the name of the State was changed from the United Republic of Cameroon to the Republic of Cameroon. 11 He went further to say that Law No. 84-001 of 4 February 1985 abolished the name "United Republic of Cameroon" to replace it with "Republic of Cameroon". 12 According to the Voice Newspaper quoting some Anglophone hardliners "It was a country that already existed since January 1960". 13 According to Mutanga, "The move by Biya in 1984 was a clear signal to Anglophone Cameroonians that they have been dissolved in an already existing nation and they ought not to exist". 14 To some respondents many English speaking Cameroonians stomached so much and in 1990s, the wind of change that blew across the continent opened more opportunities for the Government of Cameroon to right the wrongs that had vexed the Anglophones over years but it was still dashed into the sea with outright killings, arrest and imprisonment of Anglophones during and after the creation of the Social Democratic Front Party in 1990 15 a party with a pro-federalist position and a national following. 16 The regime crushed outspoken opposition 17 in Anglophone Cameroon and in 1992 when elections were rigged (presidential) according to some respondents, Anglophones showed their togetherness in opposing the government. Achille posits that in 1993 the government failed to take proposals of the Southern Cameroons' delegates in the Tripartite Conference on the return of a two State Federation. He went further to say that The All Anglophone Conference (AAC) of 1994 led to the formation of the Southern Cameroons National Council (SCNC) with a mandate to force the regime to move to a two State Federation but the Anglophone efforts were watered down and to him, the "principle of equality was undone by law". 18 This discontent sipped through the vent of the demands of the Common Law Lawyers of Anglophone extraction and the Anglophone teachers strike in 2015 and 2016 to degenerate into a point where it could not be handled through simple dialogue. --- CONTEXTUAL ISSUES Within the Cameroon Federation as early as 1961, the Anglophones started witnessing aspects of marginalization, assimilation as well as exploitation. They complained bitterly against disparagements which were in the form of appointments of Francophones into key positions in West Cameroon, imposition of the French language and administrative style on the Anglophones, closure of economic institutions and the violation of the Foumban Constitutional agreements of 1961 which put the two Federated States on equal stand. These resentments and other aching issues led to what became known as the Anglophone problem in Cameroon. Ngoh postulates that 1961 is the logical historical date for the start of the Anglophone problem. 19 Anglophone problem through the lens of this paper is the struggle by the ethnic Anglophones (former British Southern Cameroons) to uphold and preserve their cultural identity especially the Anglo-Saxon style of administration, educational system, the Common Law Judiciary System and the English language by the deliberate attempts at eroding or assimilating them by the Francophone regimes. The English speaking Cameroonian grievances were varied and owe their roots to the Federal Constitution which gave so much power to President Ahijo who ruled by decrees and purposefully violated the Constitutional agreements of 1961. Same administrative procedures were carried out by his successor President Paul Biya from 6 th November 1982 when he became President of the United Republic of Cameroon and the Anglophones continued to fight back through concerted efforts. For instance in 1983, the English speaking students in the University of Yaounde I went on strike due to the use of the French language in all aspects of the university and an attempt to eradicate the English educational system and the government responded by creating the Buea University Centre (for students in the 1985/1986 academic years to decentralize the University of Yaounde) 20 Cameroon General Certificate Examination Board ( CGCEB). 21 The fear for an eventual elimination of the unique Anglo-Saxon judicial and educational system by the Francophone system caused the lawyers and teachers strike of the Anglophone faction in 2016. Their desire to restitute the past in an old tradition of marginalization only met with a Government bed rock of intolerance, denial, 22 excessive use of intrigues and brutality, humiliation and above all, resistance to embrace truth. However, the need to effect change and reverse the socio-economic and political situation of the Anglophones through the lawyers and teachers only became a new venue and opening for all Anglophones to converge and break new grounds for the former West Cameroon. The strike call from lawyers who gave the Government a period from the date of deposit of their worries was also supported by Cameroon Education Forum (CEF) who decried among other things the violation, neglect and partial implementation of a twenty years old ordinance on education. 23 Together with Cameroon Teachers' Trade Union, Teachers Association of Cameroon, Teachers of Higher Education (the University of Bamenda was not a signatory to the strike decision but was involved only when the Prime Minister asked that, the representative of the teachers attend a meeting called by him) a strike was called. Later, other Associations in the Anglophone area 24 joined the strike action as called and to some personalities, the government was well informed of it but did not take action. The lawyers and teachers civil strike was a recurrent of protests that had for decades been staged by Anglophone Cameroonians in demand for a return to the Federal System, an Independent Anglophone State, equal opportunities and attention to be given to the social and economic needs of the Anglophone minority who were undervalued according to many Anglophones. --- CONCEPTUAL ORIENTATION An Anglophone in the Cameroon context according to Ngoh refer to a person who after the partition of German colony of Kamerun in 1916 found him/herself in the British Cameroons and they and their off springs grew up under the British in British Southern Cameroons and embraced the Anglo-Saxon culture. 25 Nfi on his part holds that, an Anglophone is one whose ancestry is Southern Cameroons and ethnic bases are in the former territory of British Southern Cameroons whether they speak the English Language or not. 26 To this paper, an Anglophone refers to people of the defined territory of British Southern Cameroons with a defined culture, history and ancestry. The concept of strike has been variedly scaled by researchers to suite their variant ideologies. This term had hardly been defined without violent. Borrowing from the Hegelian 27 school of thought, when reality 27 Hegelianism was a philosophy of G.W.F. Hegel which can be summed by the dictum that "the rational alone is real" which means that all reality is capable of being expressed in rational phylum. He aimed at reducing reality to a more synthetic unity within the embodied system of absolute idealism. and rationality are absent, a people become pruned to chaos and eventually revolutionary ideas are planted which leads to an uprising. Some respondents have it that prior to the strike action, the Anglophones had been resilient to the assimilation machinery put in place by the regime and the accumulated vexation overtime caused an outburst of a strike (protest) in 2016. It was a rise up (mass) against the constituted authority of Cameroon. --- The American The civil society belongs to that expanding and variegated composition of all institutions, voluntary organizations and corporate bodies within a state. Civil Society according to European Union is the involvement of "all forms of social action carried out by individuals or groups who are neither connected to, nor managed by the state". 28 Van Dyck on his part opines that Civil Society is "an organized social and cultural relationship that exist within a State build on indigenous values, tradition and principles to foster collaboration and the achievement of specific goals among citizens and other stakeholders". 29 He went further to say that the actors usually operate in civil space. To Evers, Civil Society is the coercive association which cuts across the borders of the state, family or community and which influences and strengthens policies through its operation and leadership. 30 In the context of this paper, Civil Society refers to the coming together of labour unions, social entrepreneurs, academic and research workers, judicial workers and indigenous people of Anglophone extraction in an attempt to position development dialogue as a means to provide opportunities, collective action and mobilize the people to articulate demands, voice and address the concerns and common plights of the society at local, national and international levels. Thus, Anglophones came together as a body in 2016 (though they have been meeting as a group) through an outburst of an agitation to change the status quo. The Cameroon Anglophone Civil Society Consortium (CACSC) was the mass mobilization of the people of Anglophone extraction of Cameroon composed of formal and informal, non-institutionalized and nonpolitical groups who seek to restore lost liberties and privileges 31 as a result of their differences witnessed in the union which was formed in February 1961. The Consortium on the other hand was an association of Anglophones formed during the suppression of the lawyers' strike of 6 th October 2016 to establish a common front against the government. It was a society of Anglophones business community, (Traders and Buyam Sellams), Teachers Associations, (Higher, Secondary and Basic) motorbike riders, drivers syndicates and other interested persons formed for the purpose of the fight against marginalization and other injustices. It was also widely asserted that the development of the CACSC and their stand point was only understood as an embodiment of grievances in the economic, social and political domain. The CACSC for a period of time dominated political discourse in Cameroon and became a liaison between the people of English speaking Cameroon and the State of Cameroon. Evidences show that the creation of the Cameroon Anglophone Civil Society Consortium (CACSC) on 6 th December 2016 was the outcome of an --- ORIGIN OF THE CONSORTIUM The Consortium draws its origin from the different stages, modus operandi and diverse weapons and methods used by the Anglophones to resist the extermination and assimilation policies of the Central Government towards the Anglophone cultural identity. According to Neba, the Teachers Association of Cameroon (TAC) led by Azong Wara in 1993 launched a serious campaign to have an independent examination board for Southern Cameroons' examination and this move was supported by the Confederation of Anglophone Parents-Teachers Association (CAPTAC) and a cross section of Anglophones (a sign of unity and community spirit expressed by the Anglophones). 32 He went further to say the people demonstrated publicly their wants and desire to have their Anglo-Saxon culture preserved just like the Consortium demands led by Agbor Balla and co in 2016. Teachers in the Anglophone regions in 1993 had also expressed their discontentment with the educational system in Anglophone Cameroon through petitions to international bodies. 33 Through groups like Cameroon Anglophone Movement (CAM), Free West Cameroon Movement34 and others, Anglophone solidarity had been expressed and the government had tried to play ignorance and created division among the people. Moreover, in 1995, lawyers had articulated their worries through a strike and individuals like Barrister F. Alowbwede, E. Elad and others were arrested because they demanded for a return to Federal and Anglo-Saxon Court systems. The Voice newspaper went further to expose that in the heat of the crisis, brothers on the other side made statements and calls for the "complete annihilation of Southern Cameroonians". 35 When the lawyers strike began and lawyers were arrested and beaten, in solidarity with them other Anglophones joined and this goaded the brutality which was used by government to dismantle such togetherness. In the same line, television journalists of Vision 4 in Yaoundé in the persons of Jacque Ze and Ernest Obama likened the Anglophones to "roaches and cockroaches who deserved to be wiped out". 36 Others called Anglophones "terrorists" and called the government to impose a state of emergency in the two regions. Banda Kani a politician expressed his worries as to why government had not used military techniques and weapons that could completely delete every single soul of Anglophone origin from surface of the earth. It was alleged that Bernard Okalla Bilai called protesters "dogs" and Tchiroma called Anglophones "secessionists". As exposed in the Voice Newspaper, the scar was also made deep on the Anglophones when names were tagged on them such as 'Anglo fools", "Biafrans", "les ennemis dan la maison" (in English enemies within) only went a long way to spark flames of an already existing vexation. 37 These utterances and hate speech only hardened the Anglophones who were undeniable marginalized, suppressed and humiliated but togetherness remained their strength in a spirit to disassociate with Francophone Cameroon. In fact some Anglophone leaders such as Chief Ayamba, F. Alobwede, James Sabum and others had assembled Anglophones to a first ever held session of the Constitutional Assembly of the Federal Republic of Southern Cameroons in Bamenda on May 1-2, 2000. 38 This signaled the coming together of Anglophones in another dimension to use such togetherness and meetings as weapons to propagate and disintegrate themselves from their French "brothers". --- The American Class antagonism as propounded by Karl Max 39 was at the heart of the formation of the Consortium. The system of inheritance (political appointments), bad governance, 40 economic exploitation with Southern Cameroon territory contributing 60% of the Gross Domestic Product(GDP) but were least developed all projected the subjugation of the Anglophones and caused them to come together; form a common force to clearly show their social economic, cultural and political dissatisfaction and interest to free themselves. Neba argues that the Anglophone discontent was a result of systematic neglect and alleged bad faith of the president who had the "master card" to solve the presented problems. 41 Based on the above, the "Anglophone minority" who also worked within the ambit of Tasang's statement; "The fight at hand is not a teacher's fight. If it were, it would talk about living and working conditions. This is an Anglophone struggle… is time for us all to rise up as one man." 42 lawyers strike but pregnant with other grievances which saw all endemic, brave and charismatic Anglophones coming together and was within this backdrop that defenders of the course representing the Anglophones such as Agbor Balla, 43 Tasang Wilfred, Fontem Neba and others put in their all to pilot the CACSC activities. In 2016, the move took another twist and Anglophones from all quarters came together to form what was called the Cameroon Anglophone Civil Society Consortium (CACSC). A group formed to defend the course of Anglophones striking lawyers and teachers and to discuss the way forward with the government of Cameroon. Many have argued that, government delay; threats and empty promises caused CACSC to emerge and eventually demanded separation. --- THE CONSORTIUM AND GOVERNMENT OF CAMEROON The lawyers and teachers strike in 2016 was supported by the entire Anglophone community and they got seriously involved after the ill-treatment of lawyers in Buea on the 6 th of October 2016 when some were beaten and robes seized. It was in solidarity with the call of lawyers and teachers that made the situation a "community problem" 44 The government could not pretend to be ignorant of the problem. They fully had it in front of them but they lacked the political will to honestly solve the problem for fear of losing grip over the territory and a people already impoverished, disgraced, cheated, robbed of their economic resources and systematically suppressed by the regime. 49 It was within this premise, of denial of facts, mistrust, tension and wearisomeness that the Cameroon Anglophones Civil Society Consortium (CACSC) was formed on 6 December 2016 as an umbrella organization which involved all the various teachers' trade unions and lawyers of common law. 50 Agbor 46 Professor Paul Ghogomu was the Director at the Prime Minister's office. Leader of inter-ministerial Ad-hoc Committee to examine and bring out solutions to the issues raised by the striking Anglophone Teachers' Trade Union. 47 Ngoh, Cameroon 1884-Present, 392. 48 Vally Tum, 53years Barrister of law based in Bamenda interviewed on 21 December, 2019. Balla Nkongho represented the lawyers and was president 51 , Tasang Wilfred backed up the teachers and was program coordinator and the Secretary of the Consortium was Fontem A. Neba. A press release No. 3 of 13 December 2016 confirmed these persons as leaders of the Consortium and had Eyambe Elias as deputy secretary general and advisers were Harmony Bobga, Abangma James, Abia D and George Ngwane. 52 The "Consortium" now managed the strike actions of the lawyers and teachers and pressed hard on the Government as classes for the second term 2016/2017 academic year was to begin. 53 The Cameroon Anglophone Civil Society Consortium in one of their demands asked for the return to federalism. The Government argued that, it was unconstitutional to change the form of state and settled on the use of repressive and political tricks to handle the problems tabled by the Consortium. The Government solved some of the grievances; for example provided the English version of OHADA Uniform Acts, created a polytechnic, and released some Anglophones arrested in connection to the strike; but the contagious nature of the strike saw pro-Anglophones activists and movements who hijacked the stage in demand for secession and not even federalism as was demanded by the Cameroon Anglophone Civil Society Consortium (CACSC). on the other hand brought about armed conflict in the Anglophone regions. Provoked by delay and the wind of change that blew across the country, the strike action took another twist as the already angry lawyers and teachers were poised to bring the government on its knees. As aforementioned, it will be good to present some of the grievances of the Common Law Lawyers and those of the teachers that finally bought them together in a Consortium (6 December, 2016). There were eleven points from the teachers which moved up to twenty five and the government had almost agreed to handle twenty one of them before the Consortium was banned. the Anglophone regions declared an indefinite strike until their tabled grievances were looked into and the government did not take serious the strike call. Some Anglophone politicians like Paul Atanga Nji fuelled the flames of the strike when statements such as "there is no Anglophone problem were made." 58 The government through the Prime Minister Philemon Yang convened a meeting in Bamenda from the 25-26 November 2016 to discuss with the teachers and it was in the meeting that he rejected Atanga Nji's statement that, "there was no Anglophone problem". 59 To him, Atanga Nji's position was not the Government's stance. 60 Some political heavy weights even openly articulated that there was confusion within the government ranks because of the counter statements from these political gurus. On this count, the Government intensified its efforts through meetings with opinion leaders and visits to traditional rulers such as Fon Agwafor III of Mankon which did not curb the situation. The Governor of the North West Region Adolphe Lele L'Afrique together with top Government officials had talks with church authorities, teacher's trade union leaders and political leaders but the talks failed as evidenced with "ghost towns" and closure of schools and the Government sent more officials to help solve the problem. --- a-Common law lawyers The Consortium asked parents to continue to keep their children at home. The Government of Cameroon made efforts to ensure school resumption on 7 January 2017 and a team of ministers stormed Bamenda; the The Government felt the least threatened with the above statement and in an effort to allow schools resumption for the term in the North West and South West Regions, the Ad-hoc committee of Paul Ghogomu held another meeting on the 12-13 January 2017 to convince the leaders for schools to start while solutions would be made to the grievances but the meeting as well failed as demands were increased with federalism as an option which later also echoed by one of Anglophones reunification activist of the 1960s, Victor Mukete. 63 In another vein, the government sent politicians of Anglophone origin to discuss with the people and their arrogance instead brought mayhem between them and nothing was achieved. Prime Minister Yang and Jean Kwete were sent to Bamenda to calm the striking teachers and lawyers in December The 65 Ibid 66 Harmony Bobga was the President of North West Lawyers' Association, a member of the steering committee of the Cameroon Common Law Bar Association and equally one of the advisers of the Consortium. and teachers but instead had glued themselves to their comfort in Yaoundé without going to the scene of event to handle issues. The reason why the people saw Federation as the only solution and a means to disconnect themselves from a system that refuses change. 67 Another personality sent by the Government was Baba Danpollo (Ndawara) to talk with the striking lawyers but the talks failed because the Government position was that Federation was not going to be an option. Government feared that Federation was "equal to secession." The CACSA viewed federation as the only way out but the Yaoundé regime saw it as a "taboo" a word that should not be used or mentioned. 68 The Government of Cameroon made it clear to the Consortium that the idea of a Federation was irrelevant and not debatable. That the "State of Cameroon was one and indivisible." 69 The Consortium on the other hand blamed the Government and said "the Ad-hoc committee created has not achieved anything" and the "Government does not want to move the process forward" and argued that the Consortium was ready to dialogue and solve the problem but Government seems to be engaged in other priorities. 70 As observed by many Anglophones, the State of Cameroon used intimidation as a weapon instead of dialogue but the CACSC stood on a two State Federation which was popular 71 and the State through the governments' spokesman Isaa Tchiroma used the media to fan flames of hatred by insisting "that the form of the State cannot be changed" thus prepared the stage for Government use of force in these parts of the country (North West and South West regions). 72 The Government of Cameroon used force and militarized the two English speaking regions and the CACSC called on the Government to withdraw the thousands of troops especially in Bamenda, Buea and Kumba. According to a press release from the CACSC at some moments, during discussions, the Minister of Higher Education ordered that the military be locked in the room of the ongoing discussions just to intimidate the members of the Consortium. 73 It was alleged that the Government through the chairperson of the Adhoc Commission instead struggled to manipulate the process when he had a meeting with the teachers and this exacerbated tension with the call for intensive "ghost towns." In December 2016, Paul Ghogomu said "dialogue could only be possible if the teacher's first call off their strike action". To the CACSC it was provocation. According to an executive member of CATTU, "the money I saw on the table during one of the meetings was what I have never seen in my entire life as a teacher". 74 To her, this diluted the extent to which the talks could be genuine because the money was to intimidate Consortium members. According to some respondents, the Government resorted on the use of force, intimidation and the non respect of engagements that were subtle and philosophical. Some went on to say that the discussions on Friday January 13, 2017 between the Consortium members and the Government were ruined (that night) due to social media gossips. Ngoh in his book Cameroon 1884-Present says that the population of Bamenda was misled through rumours on the social media that the CACSC members were held hostage and forced to sign the awaited resolutions. 75 According to Tata, --- We were in the conference room and almost concluded to call off the strike though Tasang did not see himself calling it off when some personalities dashed into hall from rumours on social media that we were held hostage to sign the document. The rumour was a false alarm masterminded by some individuals to set in confusion which they did. 76 Tata went further to say that when the crowd outside the Governor's office heard this armed with bibles, started singing and praying. 77 Independence" 78 mentioned singing and prayers in the days of Angola civil war and this was the same scene outside the hall of discussion. Confusion erupted, police ordered for the block of roads to Upstation because of the large crowd and the population misinterpreted it for an attack. According to the Post, calls and text messages went out for the block of major entrances into Bamenda town and City Chemist Round About. 79 The Voice News paper reported that at mid night, John Fru Ndi of the Social Democratic Front (SDF) Party and Ben Muna of Alliance for Democracy bashed into the conference room of the Governor's office 80 only to realize it was false information. But the streets were already full and the reaction "seemingly caused police to open fire" 81 and tension mounted beyond control either by the Consortium or the Government. The Post equally wrote that acts of violence that night caused arrest and shooting and four youths were seriously wounded around Ntarikon area. 82 According to Stephen T, "…I got a forwarded message on my phone that my brother and friends of the Consortium were under pressure from the Government, I immediately started running towards Up-Station Bamenda just to meet another large crowd at Finance Junction. The crowd was also moving to Up-Station with chants like 'we no gree oh, we no go gree…'and by the time I arrived the Governor's entrance there was no space to pass due to the crowd but my brother later told me it was not easy with 78 Brinkman Inge, "Dreams and Agency during Angola's war of independence" in African Dynamics, Struggle Beyond Structure Social and Historical Trajectories of Agency in Africa (ed) Mirjam de Bruijn, Rijk Van Dijk, Jan-Bart Gewald(Leiden: Brill, 2007), 73. --- 79 The Post, No. 01789, Monday, January 16, 2017, 3. 80 The Voice, Issue 180, Wednesday, October 9, 2019, 2. them in the meeting but they refused to call off the strike…." 83 This scenario resulted to a ruined deliberation and the opportunity of handling the problem was eminently frustrated and produced other results. The legality of the Consortium to function was questioned and despite the confusion; they operated until it was banned on Tuesday January 17, 2017 together with the Southern Cameroon National Conference (SCNC). 84 To many respondents, the leaders of both sides did not go into the negotiations with an open mind and given the fact that these leaders had the interest of their people to protect, did not consider the outcome. Some argued that if the Consortium and the Government tactfully looked at the angle from which they approached their problems, the argument of force and the force of argument could not have had a place in their discourse. The lack of political will to solve the problems and accept suggestions spoiled the discussions and thus a glimmer to the armed conflict. --- THE CONSORTIUM AND ITS RAMIFICATION During the period of deliberations, in an effort to show proof of some seriousness and an expression of a will to do more if the Consortium respected their own end of the bargain, the Government made strenuous efforts and carried out some of the demands of the Consortium; but to many Anglophones who thought the Consortium was the only forum that could handle the Anglophone grievances soon saw their hopes dashed when Tuesday January 17, 2017 turned into a The Government addressed some of the grievances of the teachers and lawyers such as the release of some Anglophone leaders arrested, creation of a Polytechnic for the English subsystem of education, admission of students into the University of Buea and Bamenda as set by applicable regulations, provided the English version of the OHADA Uniform Acts and the Cameroonian Penal Code, established a Common Law Bench at the Supreme Court of Cameroon; appointed English speaking Magistrates to the post of President of the Judicial Bench at the Supreme Court; integrated and promoted Magistrates throughout the country which took into account their mastery of the two official languages. 85 The government announced in December 2016 the recruitment of one thousand bilingual teachers, 86 promised two billion francs as grants to private schools among other things. In another frantic effort to ensure the pacification of the Anglophone community, the Government created the National Commission of Bilingualism and Multiculturalism 87 under Peter Mafani Musonge as coordinator by Decree No. 2017/013 of 23 January 2017 read over the 5pm bilingual broadcast over Cameroon Radio Television (CRTV). 88 The commission was to report and propose recommendation on the protection and promotion of bilingualism and multiculturalism to the president of the Republic…" 89 Nico H. said; "even a hundred of such commissions will not do a thing except there was peace, justice and reconciliation." 90 Though many complained that it had no use in the address of the problems raised by lawyers and teachers, it however was a step by government to calm down some other English speaking Cameroonians. In spite of the efforts made to address Consortium grievances which were embedded in the teachers and lawyers concerns, many Anglophones still were vexed with the fact that, the Government did not resolve the problems as tabled to them (State). The Consortium condemned all acts of violence and equally cancelled all 11 February and 20 th May celebrations in former West Cameroon while they called on a sit in strike and the Government to clear the streets of uniform men. 91 Violent reactions erupted in Bali where the Divisional Officer Divine Kamera was asked to leave his office and return home. 92 The State Counsel of Bali was locked up in his office, together with his staff. On Tuesday January 17 2017 at 5 o'clock a communiqué over national news banned the Consortium and SCNC. 93 The arrest of Agbor Balla and Fontem Neba a few minutes after the ban increased violence in Buea around Malingo Junction and barricades raised. 94 Government use of water cannon, tear gas and gun shots only irritated the angry mob who charged into the streets to block the transfer of Consortium leaders to Yaoundé. Ngo Bakang described the scene in the following words; 100 Lawyers Right Watch Canada was an NGO with special consultative links with the Economic and Social Council of the United Nations and condemned the government of the President of the National Assembly. 99 Although it was generally said Parliamentarians have immunity, it could easily be concluded by this situation that those in Cameroon might not have because a parliamentarian could not be begging for protection even to the extent of hiding for fear of arrest. I The arrest of Consortium members sparked condemnation from various quarters. Some Human Rights groups such as the Lawyer's Right Watch Canada a non-governmental organization with special consultative status with the Economic and Social Council of the UNO, who objected the arrest of Felix Agbor and co and argued that it was a wrong use of "Criminal Law Powers." 100 The Social Democratic Front (SDF) party also condemned government in the management of the crisis and the detention of Anglophone Cameroonians. 101 In an interview, Tchiroma said; "people would face consequences of their actions" this buttressed the fact that; there would be more arrests and detention. And after the ban of the Consortium, government launched a man hunt for other Consortium members and Wilfred Tasang following a tip-off ran into hiding 102 and disappeared from public scene for fear of being picked up to join the duo 103 Diaspora community became more violent and disturbed delegations from Cameroon sent to talk with them a few months after the Consortium was banned. In Maryland USA, the Ministers' delegation was stopped from having a meeting. There was violence in Belgium, and in South Africa, the delegation was vandalized. According to Lucas T, "sending such a team out there was a scheme to waste State money when they knew well that they will not be received" 105 In UK and Canada it was unsuccessful. A State of emergency was imposed by the governors of the two regions from 29 September to 3 October 2017 with curfew, restricted movements, and gatherings of more than four people. 105 Lucas Ntang,Tasi 75years, retired member of Cameroon Parliament interviewed at Ntamulung 14/01/2020. 106 The Voice, No. 155, 3. 107 The Post, No 1146, Tuesday April 25, 2017,3. Internet connection was shut down 106 for a period of three months in the Anglophone regions of Cameroon which according to some Government officials was a threat to "peace". To some, it was a means for character destruction, destabilization of public opinion and it misled many Cameroonians. The internet through the social media was the rallying point for those who wanted change especially at the helm of the Government as pointed out by some Cameroonians. As someone remarked, "internet was gone for three months nothing changed we switched to other connections it was reconnected on April 20, 2017 we still did not have a change." But it should be noted that the mayor of Buea Ekema Patrick thanked President Biya for internet restoration. 107 There was victimization and intimidation of people on the social media especially those who supported the Consortium stance for Federation. And Fontem Neba quickly pointed out that, "because of this, those who stood for Federation will no longer talk of it even on the social media." 108 This made some activists to pipe down for fear of being tracked especially as the police and military searched phones on daily basis. We have understood that the Government would not take the consortium serious and would not solve the problem fast so in support of the course, we shut down our shops during the days of ghost towns as fixed by our leaders though the days were many and it weighed down on us economically. Though we suffered, it was a good sacrifice. 113 The above statement shows proof that the business community was in solidarity with the Consortium though it had economic repercussions on them. Another said; The ghost towns were effective because each time there was to be a ghost town, we were informed through the social media and we bought food and other items and stocked at home. And if I was to travel to buy, I rescheduled my trip and it did not affect my business life in any way though there were many of such ghost towns called such as the Mancho Bibixy. 114 This also confirmed the above statement that social media was a means through which the Consortium circulated their information. In fact, ghost towns continued ceaselessly in the entire Anglophone territory. As a result of the failed discussions between the Government and the CACSC, some Anglophones settled that their children would not attend school and political elites of the Anglophone extraction made fruitless campaigns on back to school as many schools closed their doors. On Mondays in observance of ghost town calls by CACSC no school dared to open its doors. Statements from some high profile politicians such as; "we owe our children a duty and our utmost responsibility is to educate them" did not make a change to the school situation. Senators, Parliamentarians and members of Government from South West known as "Living Force" also called on teachers to stop the strike to enable parents send children to school. 115 Total insecurity seized the people of the North West and South West regions when the Consortium and the SCNC activities were banned by Minister Rene Emmanuel Sadi of Territorial Administration and Decentralization with the motive that, "their activities were liable to jeopardize the security of the State." This was in relation to Tchiroma's declaration in a press conference shortly before the banning order that "the Head of State has affirmed without any ambiguity that the unitary form of the State is intangible and Cameroon is one and indivisible and shall so remain." 118 What a paradox, the leaders whom the Government negotiated with to put an end to the strike action were labeled "terrorists" and terror took over the country as troops flooded the towns and every nook and cranny was invaded by the troops with armored cars "manned by soldiers armed to the teeth" a kind of situation Mukete described in his work My Odyssey: The Story of Cameroon Reunification. 119 Water tankers paraded the streets as the Government tacitly declared a state of emergency in the two Anglophone regions. 120 The situation reached fever height and some Anglophones seek means for self-defense as horror swept across the North West and South West areas. According to Munjo A., 116 Many people who had hoped that the Consortium will bring a solution to the crisis were stormed with the ban and the rapidity with which troops took position in Buea, Bamenda town and their actions took the struggle to a more radicalized stage which became more frightful even to the troops. 121 Homes were invaded, property looted by soldiers, torture and indiscriminate arrests without warrants increased in the towns of Bamenda, Kumba, Mamfe, Kumba, Santa, Kumbo and others. Awuro Esthela was arrested and taken to Yaounde, Abonge Eric was picked up at "Big Brother bar" at Commercial Avenue Bamenda and ferried to Yaounde where he spent nine months in detention in Secretariat D'etat a la Defense (SED). In March 2017, Pen Terence was bundled up at mile four Nkwen Bamenda by security forces and taken to Yaounde. It was estimated that by 1 st October 2017 over 500 persons were arrested. 122 The poor suffered a great deal and blackmail due to enmity stepped in and no one was safe. Taxis, motorbikes, the major streets and quarters became insecure. --- CONCLUSION This paper exposes the view that Government inability to quickly handle the problem of the teachers and lawyers resulted to the formation of the Cameroon Anglophone Civil Society Consortium on 6 December, 2016 which became the canopy under which all Common Law Lawyers and various Teacher's Trade Unions operated. The hanky panky game between the Government and the Consortium where mistrust, dishonesty and threats became instruments for settlement for the two groups only nursed a breeding environment for the Anglophone diaspora and those termed by the government as secessionists to take advantage and finance the already crippling situation. Their entry worsened the already bad situation and their demands through the Consortium angered the State and it took wrong decisions. The Ad-hoc committee refused to entertain talks on the Federal System and the release of all Anglophone detainees linked to the crisis. This paper from this point, affirms that the poor management of the crisis from the start to include dialogue and failure to listen to the voices of the people and international community; and the out law of the Consortium laid the foundation of armed struggle in Anglophone Cameroon. The paper found out that insecurity griped the people and some schools in the two Anglophone Regions closed their doors. Though some grievances were looked into by government, it did not satisfy the Consortium. This paper further argues that crisis management had lapses on both parties; the Government and the Consortium. The crisis was a hard pill for the Government to swallow and through the various narratives, the Consortium grievances were unresolved and the Anglophone population looked up on the Consortium. Peace became a "scarce commodity" dialogue could have been a remedy in the face of the deep mistrust but genuine dialogue was absent. This paper thus maintains that the Government of Cameroon and CACSC were the actors that could have solved the burning issues at the time but allowed conflict to take central stage. It thus calls the attention of the Cameroon Government and stakeholders to revisit their strategies in handling and addressing problems of the people. --- NEWS PAPERS The Voice --- Eden The Post --- Breaking News Bilingual The Guardian Post The Median The Horizon Life Time --- Cameroon Tribune The Independent Observer The

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Shared Feelings: Understanding Facebook Reactions to Scholarly Articles

Research on social-media platforms has tended to rely on textual analysis to perform research tasks. While text-based approaches have significantly increased our understanding of online behavior and social dynamics, they overlook features on these platforms that have grown in prominence in the past few years: click-based responses to content. In this paper, we present a new dataset of Facebook Reactions to scholarly content. We give an overview of its structure, analyze some of the statistical trends in the data, and use it to train and test two supervised learning algorithms. Our preliminary tests suggest the presence of stratification in the number of users following pages, divisions that seem to fall in line with distinctions in the subject matter of those pages.

INTRODUCTION As the prevalence of social media in the world around us increases and the number of users on these online platforms grows, so too grows the rate at which scholarly content is being proliferated and discussed in these venues. More and more, academics are finding it rewarding to look to these platforms for the insight they provide into research problems. One reason scholars have turned to social media is to measure the influence their work is having in those spaces; this has become known as alternative metrics, or altmetrics [1]; another reason is for Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than ACM must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected]. ACM/IEEE, June 2019, Urbana-Champaign, Illinois USA © 2019 Association for Computing Machinery. the knowledge online platforms provide about human behavior-an area of research known as social-media analytics [3,6,9]. Studies in social-media analytics tend to focus either on text, using approaches such as Natural Language Processing (NLP), sentiment analysis, or opinion mining to arrive at and support research conclusions [12], or on the proliferation of content through online communities [5]. These approaches have proved effective for understanding or predicting many aspects of human behavior; but they leave a number of other expressive signals unexamined. Click-based reactions, on the other hand, are a relatively underutilized resource in social-media research. Examples of quick-draw, ready-made expressive features are becoming increasingly prevalent across many platforms, and as such have attracted some amount of attention from researchers in the past few years [2,4]. In this paper, we present a new dataset of click-based reactions to scholarly articles on Facebook and use it to gain insight into how users are interacting with scholarly articles on that platform. In addition to information about the articles themselves, our dataset records the count of each click-based feature we could access through Facebook's Graph API. We use our newly developed dataset to train and test two machine learning algorithms, and our analysis of the results shines some light on surprising relationships between features. --- BUILDING THE DATASET Before going any further, it will be useful to define a few terms and features: • Click-based reactions -non-textual user interactions with shared content-sometimes referred to simply as reactions; includes Facebook Likes and Reactions, Re-shares, and Page visibility (definitions for these last two are below). • Reactions -the five click-based reactions: Love, Amazed, Laughing, Sad, and Angry; will be distinguished from the common term "reaction" by capitalization. • Page visibility -the number of followers a Facebook page has. • Re-shares -the number of times users have re-shared a public post of an article into another location. The roots of our dataset lie in the online resource Altmetric 1 , which tracks the impact scholarly articles have across a variety of social media platforms. We used Altmetric as a "jumping-off point", querying their API 2 for information on articles we were interested in and for the public pages onto which they had been shared. It gave us access to the titles, publication dates, subjects, and the URLs of Facebook shares for nearly 1.5 million scholarly articles. We targeted content shared on Facebook rather than other socialmedia platforms for several reasons. First, Facebook offers its users a variety of click-based interactions with which they can personalize their response to content; other platforms we considered targeting such as Twitter have more limited palettes of click-based reactions available to users. Second, Facebook's enormous population of active users increases the likelihood that content shared there will receive more attention: it has about 2.27 billion active monthly users, almost seven times Twitter's active population of 330 million. Third, the impact of scholarly articles on Twitter users has been the subject of many recent studies [5,8,11], whereas the response to this type of content on Facebook remains largely unexamined. With our list of Facebook URLs for article shares, we queried Facebook's Graph API 3 for the reaction counts on each post. Our dataset records their responses, and was collected during the period of December 1-13, 2018. Constraints in the number of queries allowed by Facebook's API (200/hour) determined the rate at which we could work. The resulting dataset is publicly available on OSF 4 as a comma-separated-value file (CSV). We limited our collection efforts only toward scholarly articles published in 2017. Choosing this year accomplished three goals: (i) Reactions were released by Facebook in February 2016 [7], so any articles we looked at had to be published after that time to have meaningful data on this feature; (ii) any time a new feature is unrolled, it takes some amount of time for users to learn how to use it; Prah [10] finds that use of Reactions increased from 2.4% of all interactions in April 2016 to 5.8% by June 2016, and up to 12.8% of all interactions by June 2018; by the time of our data collection in December 2018 a large enough subset of users were comfortable expressing themselves with the feature to warrant more scholarly attention; and (iii) by the time we began our data collection, a sufficient interval of time had passed for articles to be widely shared and reacted to (between 11 and 23 months). Of all the articles tracked by Altmetric, we found 296,052 were published in 2017 and had been shared on Facebook at least once. We eliminated entries that were missing data on the pages to which the articles had been shared; this reduced our set to 135,635 articles. We further limited the scope by selecting only articles with Scopus 5 subjects in the scientific domain. We chose to focus only on articles in the Health Sciences, Physical Sciences, Social Sciences, and Environmental Science. Figure 1 shows that these four categories, article counts fall within one standard deviation of the mean number of articles, as do the total number of Facebook shares (Health sciences is the only exception, exceeding one standard deviation greater than the mean of article counts). It also displays the full list of subjects in all the 2017 articles and gives a sense of their distribution. The mean and two standard deviations are indicated there with blue lines for both axes, and the four subjects we target are indicated 2 http://api.altmetric.com/. 3 https://developers.facebook.com/docs/graph-api/. 4 https://osf.io/4kh7r/. 5 https://www.scopus.com/. with arrows in the plot. Limiting the scope of subjects reduced the number of articles needed to process to just over 31,000. When we removed articles with missing features such as abstract and title, we were left with 11,474 articles: these are the articles recorded in our dataset. In our data collection process, we took the utmost care to respect Altmetric's and Facebook's specifications for how and why their data can be accessed and used and to protect the personal information of social-media users. Our interests are only in the ways that people are interacting in the aggregate with scholarly content on social media platforms-not in specific ways users' beliefs or opinions may influence their behavior. We recognize that identifying information could in some instances be inferred a posteriori from some of the data we collect; however, our method of data collection does not target anything that could be used to consistently identify individual users and avoids collecting identifying information about individuals. --- DATA EXPLORATION The click-based features of our dataset are displayed along the axes in Figure 2; also displayed are the Pearson r correlation coefficients for all feature pairs. Highly correlated pairs are: Like and Love (r = 0.82), Sad and Angry (r = 0.81), Like and Amazed (r = 0.77), Love and Re-shares (r = 0.71). We can infer that high positive correlation is a sign that users employ features in similar contexts, and that the emotional expressions represented by those features overlap. For example, a Like seems to have a meaning comparable to a Love or (to a lesser extent) an Amazed, or (to an even lesser extent) a Laughing reaction. These relationships may not surprise us because they are all positive emotional states; but other feature pairs that have related expressive values in usage, such as Angry and Sad reactions, are not so intuitive. Likes and Re-shares are correlated with the most other features; this might be explained by the fact that these two are the oldest reactions-but we also notice they are correlated with other emotionally positive reactions such as Love or Amazed and not with the negative emotions Sad or Angry. It follows that by Liking or Re-sharing a post, a user expresses a positive emotional reaction to its content. Looking at this from another angle, we infer that content that is more likely to inspire a negative reaction from users is less likely to be Re-shared or Liked. High correlation between features can lead to increased variance in model results. To counter this, modelers often eliminate one of a pair of correlated features. Rather than removing features and losing data in our sparse dataset, we combined Love/Wow and Sad/Angry Reactions into two new composite features for our models. Low correlation signifies that features have relatively distinct use values. Among the lowest r coefficients are Love/Angry (r = 0.145) and Laughing/Sad (r = 0.224); this makes intuitive sense, as these reactions nominally encompass opposite emotions. Laughing/Page visibility (r = 0.229) is another low-correlation pair, suggesting that articles that inspire humor are more likely to be posted to public pages with relatively low follower counts. It is likely that this relationship may be a result of our choice to limit the articles we include to those in the scientific domain, where humor is an under-utilized affect. Our dataset also contains outliers in each feature category; to correct for these, we re-scaled the features to a range from 0 to 1, then took the cube root to these new values. Our root normalization function is demonstrated in Equation 1; it helped to smooth the distribution of values, raising the lower values by more than it raised the higher values. The result after combination/normalization is displayed in Figure 3. rt_norm(F i ) = 3 F i -F min F max -F min(1) Even after transformation, our dataset is still sparse-zeros are unchanged by the transformation; yet features with greater variance, such as Visibility or Likes, have less spread between the IQR and outliers. The median value of all Reactions is zero, and non-zero values in those features are all in the fourth quartile. Likes have the largest interquartile range (IQR), though the median is still close to zero. Page visibility and Likes have the highest median values of all features. --- SUPERVISED-LEARNING MODELS To explore the relationships in our dataset further, we isolated two feature subsets and trained two supervised learning classification algorithms with them. We used Decision Tree and Random Forest algorithms because of the insight they provide into the relationships between features, and our feature sets are detailed in Table 1. We were interested in gaining insight into the extent to which users' interactions could be related to articles' subject matter; and so we selected article subjects as the class labels for our models. This gave us four targets for our multiclass classification models to predict. With the first set (A) we were interested in finding the extent to which click-based reactions that are immediately available to Table 1 displays the accuracy and Area Under the Curve (AUC) of our models, and Figure 4 shows the results of our models using several different metrics. For reference, scores are shown against the baseline, which represents random guesses at which of the four class labels an article belongs to. Feature set B produced significantly better results than A with both algorithms. Average accuracy of models with feature set B is 160% greater than the baseline, while feature set A is only 58% greater. Figure 5 shows the relative importance of each feature in our models. In feature set A, Likes have the greatest weight, accounting for 51% of the result on average between the two algorithms; the weight of Re-shares is the second highest importance, accounting for an average of 27% of the result. In feature set B, Visibility is the most important feature accounting for an average of 94% of the result; the remainder of the weight is spread relatively evenly among the remaining features. --- DISCUSSION AND CONCLUSION Our new dataset of click-based reactions to scholarly content on Facebook offers a wealth of possibilities for researchers interested in social media analytics. We have demonstrated how it can be used in the exploration of user interactions with scholarly content on Facebook, and how click-based reactions are an effective data source for investigating indicators of user emotional attitudes. Results from the models trained and tested on our dataset suggest that the number of followers a page has (Visibility) may be predictive of article subject matter; this indicates that there may be patterns in the content shared on Facebook pages and the number of followers these pages have. It may prove useful for researchers to explore the ways in which Facebook page popularity is stratified by the type of content displayed on their pages. We have also suggested some interpretation of Facebook clickbased reactions that are not immediately apparent, notably that Re-shares convey an emotionally positive feelings toward content, and that Sad and Angry Reactions express similar affects. These relationships are not at all obvious, and give us insight into how these features are being used in practice.

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Religio-cultural factors contributing to perinatal mortality and morbidity in mountain villages of Nepal: Implications for future healthcare provision

This paper examines the beliefs and experiences of women and their families in remote mountain villages of Nepal about perinatal sickness and death and considers the implications of these beliefs for future healthcare provision.Two mountain villages were chosen for this qualitative study to provide diversity of context within a highly disadvantaged region. Individual in-depth interviews were conducted with 42 women of childbearing age and their family members, 15 health service providers, and 5 stakeholders. The data were analysed using a thematic analysis technique with a comprehensive coding process.Three key themes emerged from the study: (1) 'Everyone has gone through it': perinatal death as a natural occurrence; (2) Dewata (God) as a factor in health and sickness: a cause and means to overcome sickness in mother and baby; and (3) Karma (Past deeds), Bhagya (Fate) or Lekhanta (Destiny): ways of rationalising perinatal deaths.Religio-cultural interpretations underlie a fatalistic view among villagers in Nepal's mountain communities about any possibility of preventing perinatal deaths. This perpetuates a silence around the issue, and results in severe under-reporting of ongoing high perinatal death rates and almost no reporting of stillbirths. The study identified a strong belief in religio-cultural determinants of perinatal death, which demonstrates that medical interventions alone are not sufficient to prevent these deaths and that broader social

Introduction Poor perinatal health is a global public health problem and reflects issues of inequality and injustice. Perinatal deaths include both stillbirth and neonatal death [1,2]. Worldwide, over 14,500 perinatal deaths occur each day [3,4] almost 99% of them in developing countries. Among developing countries, Sub-Saharan Africa and South Asian countries record over three-quarters of the world's stillbirths [5] and neonatal deaths [6]. Furthermore these regions have experienced slow progress in reducing perinatal mortality rates in the past two decades [7]. With only a 2.7% annual rate of reduction in neonatal mortality rate (NMR) between 2000-2012, it is estimated that it will take 110 years for an African and about 80 years for a South Asian woman to experience a similar chance of saving their newborn baby as is currently experienced by the average woman in developed countries [8]. Moreover, at current rates of reduction of the stillbirth rate, about 160 years and 100 years will pass before the average pregnant woman from Africa and South Asia respectively experience the same stillbirth rates as a woman in a developed country [9]. These differences are principally attributed to the weak health systems and poor coverage of maternal and neonatal care provision in Africa and South Asia [10]. National statistics from Nepal show that, despite significant progress over time, the rates of neonatal and perinatal deaths are still high at 33 per 1,000 live births and 37 per 1,000 live births respectively [11]. Within Nepal, significant disparities exist in the distribution of perinatal mortality rates. The mountain region has a neonatal mortality rate of 46 per 1,000 live births, with 85% of all neonatal deaths occurring within the first week after birth [11], while the perinatal mortality rate is likely to be higher due to the underestimation of stillbirths. These figures are equivalent to the highest mortality rates in Sub-Saharan countries. Nepal's national policies on maternal and child health acknowledge equity, rights-based approaches, family/community based care, woman-friendly, 24 hour birthing services, social inclusion in maternal and newborn care, and counting every perinatal death [12][13][14][15][16]. However, strategies developed to tackle poor perinatal health are predominantly medically-oriented and emphasise the treatment of newborn infections and promotion of health facility births. Studies undertaken in Nepal are also focussed on medical causes of perinatal deaths [17][18][19][20] and on epidemiological investigations of socio-demographic and health service utilisation variables and their distribution across the country [21,22]. There is little evidence examining the social determinants of poor perinatal health, particularly in the country's most disadvantaged areas. The literature suggests that biological events such as pregnancy and childbirth are also socio-culturally constructed and therefore we need to understand tradition, society and culture and to examine the socio-cultural contexts of pregnancy and childbirth [23][24][25][26]. Traditions, social values and culture shape pregnancy and childbirth experiences and have a strong impact on women's choice and control over both maternal and child health [23]. Values and cultures are of course different in different societies [25]. Perinatal deaths are linked to social, cultural and religious beliefs and values. For example, Hmong women living in Australia believe that disharmony in personal health as well as in the supernatural world causes miscarriage, stillbirth and neonatal death [27,28]. Likewise, studies from Ethiopia, Tanzania, Uganda and Ghana found similar perceptions among women and their families about neonatal and infant death. In Ethiopia, supernatural forces are believed to cause perinatal death and dead babies are often buried in the house or in the backyard without any notification of birth or death [29]. This Ethiopian study identified that it is not permitted to mourn a perinatal death as it is considered to be against God's will. Similar findings are reported in Uganda [30] and Ghana [31]. A range of studies discuss religious affiliations related to, or associated, with both positive and negative health outcomes [32][33][34][35][36]. The impact of religion on health is described mainly through two pathways: by affecting individual beliefs and norms related to health practices, and by increasing people's social capital/connectedness and empowering people to effectively utilise relationships and resources for their health and wellbeing. Positive health outcomes are described mainly in supporting people to live through and cope with the tragedies of bereavement, HIV/AIDs, non-communicable diseases such as cancer, positive mental health and reduced addiction/substance abuse and crime. Negative outcomes are about not seeking, or delayed seeking of, medical care due to rigid religious beliefs. Lay beliefs and lay knowledge have proven crucial to understanding and addressing the social determinants of health [37][38][39][40][41]. Lay beliefs offer an explanation for what people do and why they do it (including health behaviour), which could contribute to more effectively planning or tailoring health policy or interventions. Although the data highlight that perinatal mortality is high in Nepal's mountainous region [11], no study to date has examined women's and families' views about poor perinatal survival within the broader sociocultural contexts. Studies conducted in Nepal mostly cover the plains or semi-urban hilly regions, and are often limited to describing patterns of mortality or service utilisation [42][43][44][45][46][47][48], or medical causes of perinatal deaths [49][50][51][52][53]. An in-depth socio-cultural understanding of what lies beneath the continuing high perinatal mortality rates is lacking both at the national level and more specifically for the mountainous region which exhibits the highest rate. This paper aims to explore the beliefs and experiences of local communities about perinatal sickness and death in these mountainous villages. --- Methodology The study was conducted in two rural mountain villages of Nepal which rank the lowest on the Human Development Index (0.304), have one of the worst reported child survival rates in the country, and have no access to transportation. The two mountain villages provided a diversity of context: one village is predominantly Khas ethnic, called Aryans and who follow Hindu religious beliefs, with access to two village health facilities (a community birthing unit and a health facility), district hospital, and the other village comprising mostly Lama people of Tibetan descent who follow Buddhism, and have access to a village health facility with a birthing unit. This selection enabled the principal researcher to conduct fieldwork for data collection within the constraints of practicality in such remote areas. This study does not intend to compare the villages as such, rather the different villages were chosen to present findings as a case about how women and families living in remote mountainous settings explain and deal with perinatal deaths. Another reason for choosing the two villages was to reach the required number of participants in this study-the women and families who had recent perinatal deaths. Qualitative interviews were conducted between February and June 2015 with 42 women and their families who had experienced a neonatal death or stillbirth in the previous four years, nine Skilled Birth Attendants (SBA), two Female Community Health Volunteers (FCHV), two support staff, one Auxiliary Health Worker, and five other stakeholders (S1 File). Women interviewed were in the age range 16 to 35 years. Women continued to be interviewed until a saturation point was reached where no new information was obtained by interviewing additional women. This saturation point was reached after interviewing these 42 women. Separate interview guides were developed for the women and families, the health service providers, and the other key stakeholders (S2 File). The stakeholders comprised local journalists and staff of non-governmental agencies working in the field of maternal and child health, and child marriages. The views and experience of health service providers of their day to day experiences about provision of health services to improve mother and baby's survival, and that of the local stakeholders, supplemented the data from women's interviews and helped to understand a comprehensive picture of ongoing perinatal deaths in the study communities. Interviews covered a range of questions around mothers' experience of perinatal death and sickness. Participants were identified purposively using local volunteers, FCHVs and through contact with health facility staff. Interviews were conducted in the local language by the first author and audio recorded with participants' consent. The first author was assisted by the local health volunteers and a health service provider during interviews with participants from Lama Communities. Although Lama women and their families spoke Nepali, it was felt that helping them to speak in their own local language would encourage them to more naturally explore the phenomenon-contexts of perinatal deaths. The first author is a Nepali national with seven years' experience as a health worker in Nepal's hilly and mountain regions. The study was approved by the Social and Behavioural Research Ethics Committee of Flinders University, the ethical board of Nepal Health Research Council, and the District Health Office of the study district in Nepal. Written informed consent was sought from the participants before the start of the interview. --- Data analysis Interview files were simultaneously translated and transcribed into English by the first author. Six random transcripts were checked by five bilingual (Nepali and English) experts to ensure consistency in transcription and translation into English. NVivo version 10:00 software was used to organise the data and facilitate the development of coding frames. The texts were analysed with a comprehensive coding process, using an inductive thematic analysis technique as suggested by Braun & Clarke (2006). Thematic analysis involves identifying, analysing and reporting various themes from the data, where themes are the central organising concepts about the data. In this study, these are the aspects within the data which have revealed the socio-cultural contexts influencing perinatal deaths in the remote villages under study. --- Findings The analysis of data provided three key themes emerging from the qualitative interviews in relation to religio-cultural contexts that describe predominantly the views of acceptance and fatalism about perinatal death and sickness. These themes are: (1) 'Everyone has gone through it': perinatal death as a natural occurrence; (2) Dewata (God) as a factor in health and sickness: a cause and means to overcome sickness in mother and baby; and (3) Karma (Past deeds), Bhagya (Fate) or Lekhanta (Destiny): ways of rationalising perinatal deaths. --- 'Everyone has gone through it': Perinatal death as a natural occurrence The collective experience of perinatal death among the study participants, their families, neighbours and the whole community has contributed to the notion of perinatal death as a natural and acceptable occurrence. This notion is expressed as follows by a 20-year old mother with experience of losing her child: My grandmother had 10 births (Sutkas-childbirths). All of her babies died. . .., after 12 years she delivered my father and his three sisters. My father says, ' you are young, you can bear babies, you haven't lost anything'. My father-in-law is also the only surviving son in his family. (Interview, mothers) Another participant, while describing her own and her sister's story, labelled perinatal death as a common phenomenon that everyone faces: My sister lost two babies, a boy, and a girl. We both lost our babies. Now she has two living children, and I have four. Everyone has gone through it. We can do nothing about it. . . (Interview, mothers) Perinatal deaths, particularly for the first or second pregnancies, have been seen to occur in the participants' generation, their parents' generation, their grandparents' generation and so on, and have been accepted as intergenerational life events. This has led to a perceived lack of control over mother and child health. A local auxiliary nurse also confirmed that the village women take the loss of a baby rather naturally, as a 'generational continuum': Village women believe that losing a baby is seen as a generational perpetuation in their families. They say, 'my sister also lost one, my mother-in-law had the same experience and my mother had also lost babies. (Interview, service providers) The commonness of the experience of perinatal loss is reinforced further when women and families find local Female Community Health Volunteers (FCHVs) and health service providers also experiencing similar events: That female health volunteer (she points towards a nearby female health volunteer's house) lost a son after birth. And, the two women over there also lost their babies. It is like this here, it occurs with everyone. (Interview, mothers) 1.1 Timing and perinatal deaths: Low level of concern about early life. The study revealed that there is an association between the time of death and the level of acceptance: the sooner the baby dies, the more acceptable it is for parents and community. Stillbirth and death immediately after birth or during the mother's confinement in Gotha (cowshed) is readily acceptable: I didn't feel worried about the stillbirth (Hudaimareko). I felt it was okay. It rather made me easier to resume my day to day work sooner. (Interview, mothers) Gotha is the place of birth, the ground floor of their house where a woman gives birth and resides during the postnatal period until about three weeks after birth. This study explored that both mother and baby are considered impure (Chhuhi) after birth. To keep the main part of the house pure, and not to pollute their Dewata (God), the birthing mother and her baby remain confined in Gotha. By adhering to this tradition it is believed that they are not displeasing their God, and hence protecting themselves from any harm that might result from God's wrath. It is not a matter of significant concern when a baby dies before the last month of pregnancy (Hunemahina). In the local dialect, the term foetal death is used interchangeably with miscarriage which shows the lack of special importance given to pregnancy loss. My wife had a foetal death (Aadanjhadne), but that was not a death, she lost it at six months of pregnancy. (Interview, mothers) The concern towards a baby's death increases when a woman enters the main home after Gotha around three weeks after birth, and family members visit the baby. In these mountain areas, perinatal deaths have no ritual significance. From the viewpoint of health volunteers, the repeated occurrence of perinatal deaths and lack of social or religious concern placed on them render them not worth counting or reporting. Foetal death was also described by participants as Pakhala-literally translated as a diarrhoeal disease-which metaphorically means a nonsignificant, common and natural occurrence. This perception about foetal death is shown in an interview with a Female Community Health Volunteer (FCHV): There are many women losing their babies in pregnancy (Pakhalajane) and neonatal deaths. You can see these in every single house. Are we going to record all such deaths? Two years ago, even the local doctor's (Auxiliary Health Worker) sister-in-law lost her baby. I know two women there who lost their babies in pregnancy (Pakhala). A woman in that house [she points to the house] had twin babies, but both died as newborns. (Interview, health volunteers) Poor recording/reporting of such deaths became obvious when the first author on fieldwork reviewed the health facility records and had day to day conversations with the FCHVs during the recruitment of participants to this study. Moreover, it was not easy to get the data at first. Initially, FCHVs could not remember any such death in their neighbourhood. Over time, during repeated contacts and conversations, they started recalling women who had experienced perinatal losses. During the five months of fieldwork in the two study villages, eventually 42 women voluntarily reported 49 perinatal deaths (16 stillbirths, and 33 neonatal deaths) occurring in the last four years, with a majority of them occurring in the last two years. These 42 women are estimated to represent approximately 3% of the women of childbearing age in the study villages. By comparison, the local health facilities in the two study villages reported only five neonatal deaths in their verbal reports and only three in the local records. Not a single stillbirth was reported in the village health facilities. Based on these crude data, it is estimated that the study villages have a current neonatal mortality rate of 44 per 1,000 livebirths-similar to the official estimation of 46 per 1,000 as reported in the 2011 Nepal Demographic and Health Survey. This field visit also revealed an extended perinatal mortality rate of 63 per 1,000 births if stillbirths and all neonatal deaths until 28 days after birth are included in the calculation [54]. These estimates are based on the reported number of perinatal deaths for the previous four years. It should be noted that these two rates-neonatal mortality rate and the extended perinatal mortality rare-are not strictly comparable because the neonatal mortality rate is based on live births but the extended perinatal mortality rate is based on all births (live births plus still births). With a household survey based on a representative sample, the rates would be likely to be different because women in this study were participants of qualitative interviews who willingly reported their perinatal losses. --- The will of Dewata (God) in health and sickness: A cause of, and a means to overcome sickness in mothers and babies The word 'Dewata' is a collective name of Hindu Gods and Goddesses. The study revealed that believing in God's will as the cause for health and sickness has a very strong impact on views around perinatal death. One can find the Dewata represented in various symbolic forms everywhere: for example, as statues, temples and ribbons in the farmland, on the banks of streams, on street corners, in the forest, inside the houses and in the middle of the villages. 2.1 Dewata (God) and childbirth complications: Seeking faith healers during pregnancy, and childbirth. God's will is believed to be a key cause of problems in pregnancy and childbirth. One of the participants, a 22 year old mother, commented that her breech presentation during delivery and the subsequent neonatal death were due to not worshipping their God: My baby did not die due to breech presentation (Ulto). It is because God (Dewata) was angry with us [she cries]. My family should have called the faith healer (Lama), and prayed to God [Gyana]. They didn't do anything to please God at home [she cries], therefore my baby died. Local faith healer had told that it was not going to be a good fortune if we didn't worship God. (Interview, mothers) It is believed that faith healers can make the necessary prayers to please God. Faith healing is an old tradition practised for generations and has a strong foothold in these villages. Faith healers outnumber health volunteers and health service providers. There are different cadres of faith healers locally known as Dhami-Jhakri, Dangri in the Khasan community; and Lama, Chumba in the Lama community. Women and their families believe faith healers are chosen by God, they can understand God's language and can alleviate any kind of suffering including women's sickness. The faith healers are usually called to be present during childbirth and they are relied upon to relieve a woman from pain and suffering, to speed-up the birthing process and to save the lives of mothers and babies. They are also relied upon to help with other family health issues and pregnancy complications such as fainting during pregnancy; prolonged and severe labour pain; breech position of the baby; and when a woman feels weak during the birthing process. --- God's will and impact in health care seeking Seeking assistance from professional health providers is often not the first choice of treatment. Professional health providers are sought only when the faith healers fail to provide assistance and if the faith healer gives the women and their families permission to contact a health provider. A local health worker described a moment when he had to attend a woman in labour at home together with a faith healer: The faith healer (Lama) was ringing a bell around and reciting prayers (Mantras). I had to deliver her by rupturing her membrane. They invite us only when they are permitted to do so by the faith healers. (Interview, service providers) Believing any sickness is a result of God's will means that formal health care for any health problems during pregnancy and childbirth is rarely sought. A local Auxiliary Nurse confirmed this: She [referring to a pregnant woman] was seven months pregnant. I asked her family to describe to me what had happened. They said that she died due to God's curse (Dewatalagne). (Interview, service providers) 2.2 Dewata (God) after birth-Seeking and receiving care for babies. Women and families also attribute their babies' sickness to God's displeasure. In their daily conversations, the range of sicknesses are together called 'God's wrath (Dewatalagne)'. It is believed that sicknesses happen when God is not pleased. To alleviate the sicknesses, one is expected to please God by prayers, wearing amulets, sacrifice (animal) and offerings made through faith healers. --- Local sickness labels The different sickness types frequently described by the participants are listed in Table 1. --- Type 1 sickness: God attributed as a major cause and a means to alleviate/cure sickness The type 1 sickness labels in Table 1 were attributed mainly to God's will. Participants believed that to overcome these sicknesses they need to please their God. Faith healers were utilised to make offerings to God and to make their God happy. For example, a new mother's lack of breastmilk was believed by one family to be caused by witchcraft/evil eye, for which they called a faith healer: For three days, there was no milk secreted from her breasts. We contacted faith healers (Dhami, Dangri) to avoid witchcraft k; four faith healers (two Dhamis and two Dangris) came to our home. . . .We could not save him [the baby] longer; he died on 27 th day. (Interview, family members) Likewise, for another participant, her newborn with complaints of vomiting was believed to be afflicted by a ghost (Bhut) and the forest God (Bandewata). She lost her newborn baby last year: We contacted local faith healers (Dhami and Lama). They said the baby was under the influence of a ghost (Bhut). They also told me to pray to the forest God (Bandewata). But, the baby died early. I couldn't even manage to pray to the forest God. (Interview, mothers) In addition, participants believe that pregnant or postnatal mothers become unwell if they attract the wrath of God while on the way to, or working in the forest for grazing cattle and collecting fodder, firewood and grass. They believe that the forest God could affect a baby in the womb. The God of a family clan (Kul Dewata) and astrological hindrance (Graha), which is the influence of heavenly bodies, is also believed to inflict sickness on mothers and babies. After her three perinatal losses (1 stillbirth and 2 neonatal deaths), one interviewee mother described how her family worked to make their God happy to save babies: We worshipped to overcome astrological hindrance (Graha), contacted faith healers (Dhami) from around the villages to know why I continued losing my babies. We Table 1. Sickness types reported by women and families in the villages. --- Sickness types Beliefs Type 1 Sickness: God as a cause and alleviator/cure of sickness worshipped the God of my parents' home (Maiti Dewata) as well as the God of my in-laws' home (Poili Dewata). We tried our best to worship and pray to God. I don't know why I continue to lose my babies. (Interview, mothers) Women believe that the unhappy God of their family clan (Kul Dewata) could bring disgrace to the land and the site of their house. One mother also consulted the faith healer when her newborn baby was bleeding from the umbilicus. However, her baby died on the 11 th day after birth: Both the faith healers (Dhami and Lama) were right about me; there is something wrong with this house [the site of the house]. I lost my two children here. They said, 'God (Dewata) of this house is unfavourable to you'. Like they said, both my children died at this house. (Interview, mothers) They also believe that an angry God can affect people through the hungry dead spirits (Muiya) of the deceased family members or close relatives. A mother-in-law described the deaths of her two grandchildren (newborn babies) from this cause: It was not a sign of luck. We contacted local faith healers (Dhami, Dangri) to offer the spirit (Muiya). Yet the baby did not survive. Nothing worked. (Interview, family members) The health seeking behaviour of families is strongly influenced by their beliefs about God's will in disease and death. For an unhappy God, the medicine from a health facility is perceived to have no effect, hence participants are reluctant to contact health workers and believe that seeking care from a health facility could even be harmful. A young husband aged 18 years stated: Here in our tradition, if it [disease] is due to God, medicine doesn't work at all. If it was due to God, and they took medicine, it would further harm. (Interview, family members) Type 2 sicknesses: God as a cause, and sickness alleviated through God and local traditional therapy Women and families refer to God as a main cause of sickness, yet sometimes they seek combined care including herbs from local herbalists, worship, prayers and Mantra recitations from the faith healers (Table 1). They seek local herbalists, called Baiji to overcome sickness, particularly when the sickness types are perceived to be Taplagne (effect of heat), Banlagne (rainbow attack) or Mojhlagne (weakness of the womb). In these sickness types, God is attributed as a main cause, and they prefer to seek a faith healer and herbalist together. Even if it is the herbal medicine from Baiji (herbalist), they still focus on pleasing God by sacrificing animals and making offerings. A baby is perceived to suffer from Taplagne when found hot (feverish), and having diarrhoea or vomiting: Taplagne makes their body hot and febrile, causes diarrhoea (Chherne), vomiting (Ukhalne), and Pneumonia (Sardi). A faith healer, who practices both as a faith healer and a herbalist (Baiji) treats baby with local herbs, throws holy grains (rice) and water over the sick baby's body, and prays and worships God. Pastes made from herbs are applied on the baby's head and body. (Interview, mothers) A sickness is attributed as Banlagne (rainbow attack) when they do not have any other explanation for babies' deaths, such as death soon after birth. One of the participants described: My neighbour also lost her baby boy due to Banlagne (rainbow attack). Experienced herbalists can treat it. We need a broom, Khukuri (a knife) and a bird feather (Garud) to worship God to alleviate Banlagne. (Interview, mothers) When a woman is believed to be suffering from Mojhlagne (weakness of the womb), she is considered more vulnerable to continuous baby losses in pregnancy or soon after birth. The participants believe that this occurs due to God's curse, and believe that it can be treated by transferring it to specific plants or fruit trees with the help of an experienced faith healer and herbalist. 2.3 Perinatal losses: Repeated pregnancies and aversions to family planning-God's will?. Women suffering perinatal losses and stillbirths go through many pregnancies. In the remote mountainous region of Nepal, where the women are often poor, malnourished and less educated, such repeated pregnancies at short intervals are liable to end in stillbirths, or perinatal deaths if the pregnancy goes to term [55][56][57][58]. The use of contraceptives that can prevent frequent pregnancies and consequently may assist in preventing perinatal deaths is believed to be against God's will. This is particularly related to vasectomy, the male method of sterilisation. Participants believe that if they have a vasectomy, their God will be unhappy and bring bad luck to their family, such as disease or death of family members; this includes pregnancy loss and newborn death, as well as damage to livestock and property: One mother, aged 32 lost seven children (including stillbirths, neonatal, infant and toddler deaths) out of her 10 pregnancies. Her husband shared his fear of vasectomy, believing that his family God (the Kul Dewata) does not favour it. . . .because of our family God (Kul Dewata), the operation [vasectomy] won't suit me. My father had the operation, then this didn't work, he died when he was just 42, very young. He was very young. (Interview, family members) It is to be noted that ongoing perinatal deaths in these areas are also associated with gendered expectations about a girl and a daughter-in-law. Young girls are viewed to be secure and settled in the in-laws' family by giving birth to a baby who lives, preferably a baby boy. The context of high mortality in the study areas exerts a pressure to repeatedly conceive. Hoping to have a baby who lives, preferably a baby boy, young women have repeated pregnancies with shorter birth intervals. The weak social position of a daughter-in-law (pregnant woman) renders them powerless to decide on how many children to bear and when. They are often controlled by their mothers-in-law and husbands about pregnancy and childbirth matters. --- Karma (past deeds), Bhagya (fate) or Lekhanta (destiny): Ways of rationalising perinatal deaths According to the Oxford dictionary, the Hindu or Buddhist notion of Karma is defined as "the sum of a person's actions in this and previous states of existence, viewed as deciding their fate in future existences". The Indian scholar, Krishan [59] described Karma in the Hindu religious sense as an 'action potential' manifesting into a result or consequence which influences an individual during her/his next life. Likewise, the nearest English translation of Bhagya refers to fate. Similarly, the English translation of Lekhanta means 'already written' or 'pre-destined'. In these study villages, Karma or fate as reasons for perinatal death is attached personally to a woman's Karma or fate. It is believed that one's good Karma in the past yields good results. If one had bad Karma in the past, the results would be bad, which s/he has to experience during the present lifetime. One 35 year-old's story, who is currently pregnant with her 10 th child, shows how she related Karma and fate to her repeated pregnancies and the deaths of her babies: I lost these babies [her three children]. Had they survived, why should I have had too many births? I am unlucky, this is my fate (Bhagya); this is my Karma. (Interview, mothers) By Bhagya (fate), the participants in this study referred to the current state that a woman has been facing, and which is perceived as a result of one's Karma, therefore the word Bhagya is often used together with Karma. A baby's death is frequently linked to a woman's fate, which in turn is thought to map out from her Karma. The use of the term 'fate' indicates a stronger belief about the lack of control over babies' deaths. A 31 year-old mother did not see any possibility of preventing the death of a baby against her fate: How can we stop this [a death of a baby]? We can't prevent a man dying and a river flowing. If the baby is not in your fate (Chado), s/he will certainly die. Look, these other children, they are here. That baby was not in my fate (Chado), and passed away on the day after birth. (Interview, mothers) A woman's Karma or fate is perceived to be strongly related to her experience of perinatal deaths, particularly when she experiences continuous losses, usually the loss of two or more babies. Karma and fate is often perceived personally, as a woman's personal fate. Believing that this was her personal fate, a 20 year old mother, who lost her 3 babies, even told her husband to marry another woman, and said she would not want him to be sad on account of her personal fate: The perception of Bhagya (fate) is even more complex. A few women perceived fate not only as a reason behind the deaths of their babies, but also as a reason for other, future consequences that they will have to bear. Different from Karma and fate, the participants rationalised destiny solely to a baby's own predestined future. A few women had no idea of the causes of their loss, and simply accepted it, nodding their head on their husbands' comment and staying busy caring for their other babies. One man who lost 2 newborns, is an educated person, works in public office, and still he perceives that it was his babies' Lekhanta (destiny) to die: Our two babies died after birth. What to do [there is no way]. No one can control these deaths. The ones who are to die will die anyway. This was Lekhanta (the destiny) of these babies. The rest of our babies survived. Now, they are growing up. We have a grown up eight year-old daughter, a young boy and a baby girl. (Interview, family members) The belief about destiny implies a complete lack of control over their babies' deaths. Participants likened the babies to a cucumber (Kakadi), which could be picked from the kitchen garden any time before it is ripe: I lost my own children, and also lost my three grandchildren. What disease did those little ones have? There is no other reason, just a destiny (Lekhanta). I don't know, it was neither heat (Taplagne), nor any other problems with these babies. The newborns are like cucumber (Kakadi), they could be picked up anytime as per God's plan. One God gave it and another God took it away. (Interview, family members) During an informal chat in the village, a local faith healer commented that Lekhanta (destiny) is the reason for babies' deaths before Chhaith, a local Hindu ritual celebrated usually on the sixth day after birth: When a woman is hungry, it affects her baby; we call it Hanpiyera (work exhaustion and hunger). The baby dies in the womb. If the baby dies before Chhaith (the sixth day celebration), it is due to Lekhanta (destiny). This is not due to anything related to mother, father and family. (Interview, faith healers) The deaths of babies after birth during a woman's confinement in the birth place, Gotha, are also attributed to destiny. The women and families were more convinced about destiny as a reason for a baby's death when the baby died after seeking help from faith healers. --- Discussion This study has examined the religio-cultural contexts surrounding perinatal mortality in two remote mountain villages of Nepal. These villages were selected because they ranked lowest in terms of development and child survival and provide rich evidence of local ways of understanding and responding to the very high levels of perinatal mortality, even though they might not be representative of all the villages in the region. The collective experience of perinatal death in the community has shaped the villagers' construction of perinatal deaths as inevitable experiences which modern healthcare systems cannot address. Some people believe that modern healthcare may even make the situation worse. Individual and collective experiences are viewed as valid sources of knowledge in the social constructionist view [60]. In this study, the past experience of women and the experiences of older family members construct the knowledge of younger women. The persistent occurrence of perinatal deaths is considered as a 'generational continuum', bound to occur with everyone. --- Acceptance of ongoing perinatal deaths This study has identified acceptance as the norm when a baby dies before term (Hunemahina), as a stillbirth (Hudaimareko) or during a mother's and baby's confinement after birth until the third postnatal week. In this study, the women's and families' description of perinatal deaths as Pakhalajane, or Aadanjhadne indicates premature deaths before term are not viewed as lives lost, but perceived simply as a diarrhoeal condition as if women were emptying their bowel. Hence, these are not considered worthy to report to authorities, nor to be mourned. Such perceptions are similar to the views of Hmong women living in Australia who consider stillbirths and neonatal deaths as non-significant events [61]. A recent study from the rural Amhara and Oromiya regions of Ethiopia [62], a study from Tanzania [63] and a study from Uganda [30] have described similar perceptions of low social significance given to stillbirth and neonatal death, as they are considered as deaths of non-humans, deaths of spirits, or events not worthy of sharing with others. A sense of stigma about perinatal deaths has been reported by some studies in African [29,63], Asian [64,65] and migrant Australian communities [27,28]. These studies have discussed stigma as one of the key factors making perinatal deaths invisible in communities [9,63,66]. However, in the present study, such deaths did not appear to carry any stigma; they were simply considered to be of low importance, and therefore not worth reporting. The common experience of perinatal deaths among every family, who also view these occurrences as generational continua, has led them to believe that these occurrences are so common that no one pays any attention to them. Another reason for not attaching importance to such deaths is the lack of any ritual significance of a stillborn baby or neonatal death. A perinatal death is considered a mere biological loss not requiring any death rituals. Such a construction does not consider perinatal death as the loss of a social individual, which means no attention is paid to improving perinatal survival in the study villages. Loss of these early lives is more a question of a nonvalue attributed to their personhood in these villages, reminiscent of Aries' argument in relation to the social construction of childhood that parents will not respond too emotionally to infants who might die early, and hence consider them as "neutral" (or non-person) for some time after birth [67]. This loss is also not considered a psychological burden to women and families to attract a stigma for having experienced such losses. Stigma-related burden is almost non-existent in these communities also because of beliefs about God and Karma in illness causation and death. This indicates a level of acceptance of perinatal deaths to such an extent that parents and families see no reason to take any measures to prevent such deaths. --- Dewata (God) as a factor in health and sickness People believe that God exerts a powerful influence on illness causation and response to recovery. In these villages, God is omnipotent and affects every aspect of day to day life, and is not just a symbolic statue kept inside the house [23]. Such a worldview of God shares similarity with the traditional Akan religious worldview about health and sickness as described in a study from Ghana [68]. The indigenous Akan people in Ghana, and people in Tehuledere region of Ethiopia [69], believe in a host of human (witch, sorcerer), non-human (ghost, ancestor, evil spirit) and supernatural beings (God/Allah and deity) having capability to affect their lives positively and negatively. In the study villages in Nepal, common illnesses of mother and baby are also believed to be due to the displeasure of God, described under the generic name Dewata, and are believed to operate in different forms through human and non-human agents. The study also showed the villagers having their own illness language broadly categorised into two types: (i) illness solely attributed to God, where the cures are shaman healings, prayers, animal sacrifice, offerings, worships, mantra recitations, sprinkling holy waters, exorcism and amulets; and (ii) illness in which God is attributed as cause, yet the care combines the former approaches with the use of local herbs. In both illness types, local faith healers are the key care providers because they are believed to possess Godly powers and have the ability to invoke the mercy of God. Other studies from Nepal also describe how villagers seek the help of traditional healers for general health problems [70,71]. Beliefs about perinatal sickness and death due to supernatural forces are also revealed in other studies in Africa and among Hmong women [31,61,62]. What is added from the present study is that not only baby's illnesses but also mother's common illnesses, birth complications and contraceptive norms are considered to be in God's control. In the villages studied in this research, God is believed to be both a cause and a cure for mothers' and babies' problems along the pre-pregnancy to postnatal continuum. Birth complications which require skilled attendance or immediate referral are believed to be caused by God's wrath, so that the family will invite faith healers to perform exorcism, prayers and offerings to God until the last minute. Importantly for healthcare provision, the study identified the belief that for a sickness due to God's wrath, going to health facilities might negatively impact on the cure. Health workers are therefore consulted only when none of these work, and usually only after permission is obtained from the faith healers. --- Rationalising perinatal deaths as Karma (past deeds), Bhagya (fate) or Lekhanta (destiny) Fatalism has been described by studies in different South Asian countries as a means to accept various events, resulting in an inertia where attitudes and behaviours perpetuate the occurrence of such events. Outsiders might view these as "risky" behaviours which must be changed to prevent the occurrence of events such as perinatal deaths. An Indian study [72] showed that belief in Karma, sin and God's punishment were described as reasons for Leprosy by about two-thirds (65%) of the study's interviewees. Fatalistic beliefs about infant deaths are identified in other studies, such as in the upper Lombok region of Indonesia where infants died due to simple treatable conditions [65]. A multi-country study from South Asia and Africa records fatalism surrounding treatment of neonatal infections [73], healthcare for small and sick newborns [74] and stillbirths [66]. However, none of the studies referred to here have thoroughly explored the specific socio-cultural contexts of the events investigated in as the way which the present study has. In these Nepalese study villages, the religio-cultural base of women's Karma (past deeds) and fate were interchangeably used as reasons for a baby's death. These beliefs intensified the acceptance and fatalism about perinatal death so that women and families remained passive about seeking healthcare for perinatal sicknesses, contributing to the continuing occurrence of these preventable deaths. One of the most common phrases during interviews and informal chats about why a baby died, was 'What can we do? This was my Karma' (Ke garne, mero karma yestai), reflecting deeply rooted fatalistic beliefs. Such fatalistic beliefs came out even stronger when women rationalised their baby losses as Lekhanta, which they often meant as the baby's personal destiny, thus feeling helpless in doing anything to prevent the baby's death. --- Implications for future health provision Raising critical consciousness about Karma: As a fatalistic belief to empowerment. Max Weber, in his book 'The Religion of India: Sociology of Hinduism and Buddhism' described the fundamental values of Hindu and Buddhist religions, Karma and reincarnation as doctrines of fatalism [75]. Weber states that these values do not talk about this world but about a supernatural world, and that they point to past or future lives. Although Weber's interpretation matches the reality of the villages studied in this research, the concept of Karma may be viewed as a universal law of justice, a law of cause and effect. From the present study, it is argued that the perception of Karma and persistent occurrence of perinatal deaths in the study villages is the result of their false Karma consciousness. Karma is not meant to endure inequity or injustice as the women face in the study area of Nepal. In the Bhagavad-Gita, the fundamental religious textbook of Hinduism [76], Karma is described as a great art of performing action in all realms of thinking, speaking and acting. It is not so much about the past Karma of previous lives, it is mainly about present Karma which an individual is considered to have a control over, hence bringing the power into the individual's authority and will. Therefore, the Karma doctrine is described as bringing awareness about one's actions and bringing back cause and effect into his/her control rather than relying on fate or passively waiting for past karma to map out one's fate. It is meant to empower one from weakness, pessimism and escapism, and to help one remain firm as a Kshatriya, a warrior who is mindful of the realms of his thoughts, speech and actions. The values that Weber described as fatalistic refer to teaching an art of living, and a way to liberate one's life. On this basis, in the study villages an active collaboration could be sought with the local religious leaders and faith healers to correct the misconception (or a general popular conception) of these fundamental values and thereby potentially offering a slight reorientation of belief to local women and families. This argument might also at once reinforce their religio-cultural values yet also avoid the false perceptions and associated fatalistic views which have become popular conceptions in these areas rather than the scriptural ones. In the present study, the acceptance and fatalism related to religio-cultural contexts is an emergent theme analysed through the participants' narratives regarding the experiences and beliefs about their stillbirths and neonatal deaths. The deeply interconnected religious, spiritual and cultural values have been termed together as religio-cultural contexts. One may argue that the religio-cultural beliefs of Karma, fate and God have healed the wounds of women and families and any potential psychological burden from experiencing perinatal losses. However, the continuous human losses cannot be justified on the grounds of human rights, or the right to life of every child [77], nor when almost all of these deaths are most likely preventable. Addressing the false perceptions of Karma and Dewata (God) with due respect to local culture may be a key to the way forward. Using a socio-cultural lens in reaching care: Bridging professional dialogues with lay discourses. Current perinatal survival policy and practices in Nepal describe a predominantly bio-medical discourse to improve survival, with less regard to the evidence regarding local socio-cultural contexts in the mountainous regions [12][13][14][15]. The policies are influenced by overwhelming national and international evidence on epidemiology and bio-medical risk factors of perinatal deaths: stillbirths [9,78], and neonatal deaths [8,79]. The available interventions are largely bio-medically oriented, aimed to prevent deaths from sickness, complications of prematurity, infection and asphyxia, based on a Western medical viewpoint of the causes. By comparison, the lay constructions and beliefs surrounding perinatal sickness and death see loss of early life as generational perpetuation and common experiences; they attribute perinatal sickness (and cure) to God; and rationalise perinatal deaths as Karma, fate and destiny, resulting in the belief that either no-one can intervene or only a faith healer can intervene. Both views lead to formal healthcare either not being sought at all, being sought "too late", or being deemed as actually more harmful. The findings strongly indicate a need for bridging professional discourses with lay discourses. The healthcare systems and policies need to acknowledge and negotiate this in their actions about improving poor perinatal survival. Partnership between health service providers and faith healers. The present study argues that it is not just cultural perceptions of safety with God which Kaphle [23] discussed, but it is a false awareness of God in their religio-cultural context, most likely begun as a moral order to instil discipline which became reinforced by faith healing practices. The belief in God's influence in health and sickness has been a predisposing factor preventing families from seeing the medical severity of any sickness or childbirth complications of a mother or baby. Eventually, this influences families in who to choose as their healers [80]. They therefore choose traditional healers as the medium to invoke God, thus delaying, or indeed often preventing, them from seeking skilled and timely care from "formal healers" (in the healthcare system). Furthermore, the perception of religious beliefs about God and Karma are popular concepts rather than scholarly concepts. On this basis, the present study urges health professionals to work in mutual collaboration with faith healers and religious leaders so that a mother and baby could access timely healthcare for any sickness and could be saved from simple avoidable causes, and at the same time also continue to observe their religio-cultural duties. Such interventions have been introduced in Indonesia, where trained midwives work in collaboration with traditional birth attendants to attend women's delivery and both provide for the emotional and cultural needs of local women, refer pregnant mothers, and provide postdelivery services in the communities [81]. There has been a growing realisation for the need to integrate spirituality in medicine/ healthcare [82,83]. This has been considered especially important in addressing the religiosity of patients in societies with diverse faiths. McCormick and Min [83] suggest that a spiritual history should be recorded about every patient as a part of his/her general medical history so that any religious/cultural/spiritual beliefs can be understood, and utilised as a resource for the healthcare, support and wellbeing of the patient. Although the study villages are not open societies with diverse faiths, the engendered context of the perception of God as an aetiology of sickness, and the religious value of their Karma being seen as a reason for perinatal deaths, indicates a lack of consideration of religio-cultural factors in the formal health system in the villages. It is imperative for primary healthcare workers to understand and address such beliefs in these communities in a culturally safe way, not merely focusing on instructing about "danger signs" from a medical perspective during pregnancy, birth and postnatal period to a handful of women attending health facilities. Rather, it would be imperative to revise the entire curriculum for the training of doctors, nurses, midwives and health workers to include training to address religio-cultural issues in health in specific communities. Intensifying community engagement: Revisiting the contents of behaviour change communication. Ending preventable stillbirths and neonatal deaths is an international goal [84]. A range of studies [85][86][87] have suggested a long list of family/community and health facility based interventions to prevent these deaths. Although these interventions are typically characterised as family and community based, they are often prescriptive and do not understand the context and awareness level of women and families in the communities. Women's and families' construction of perinatal deaths as a natural event of low social significance means that they pay less attention to ongoing perinatal deaths. On the other hand, this indicates that they most likely have a low level of awareness and behaviour change for adopting healthy perinatal care (seeking formal health care), even though the national policy strategies [12,13] are aimed at such behaviour change. The key bio-medical focus of the policy discourse about causes of stillbirths and neonatal deaths (infection, asphyxia and intrapartum complications) is intended to limit the content of behaviour change to conveying the knowledge of danger signs (during pregnancy, delivery and postnatal) to mothers. However, this does not link to local understandings of what constitutes danger. Local religious/faith healers could be approached to ask about the possibility of supporting women and families to explore and discuss their constructions related to personhood status of a stillborn and a newborn baby (loss of early lives as natural events of low social significance), illness causation (God) and their rationalisation (Karma). Assisting communities in this way could be a key focus and content of family and community based behaviour change interventions and birth preparedness packages. Otherwise, the prescriptive list of interventions or their packages (newborn/child intervention packages) alone are likely to be much less effective, and this could be one of the reasons for its low impact in Nepal's newborn intervention package [21,88]. Addressing fatalism as a systemic issue. Målqvist [89] described the invisibility of neonatal deaths in a northern province of Vietnam due to a dysfunctional reporting system. A study from India also described that reporting the actual number of deaths is avoided by health providers as deaths could be judged as being due to their poor performance [90]. The present study suggests that the invisibility of perinatal death in this study's remote mountain villages is reinforced by the fatalistic attitude towards perinatal deaths, not only in the community but also in the local health system. The sum total of deaths reported by participating women from the study villages provided a larger number of deaths than the sum total of the perinatal deaths reported by the District Health Office for the last four years across the 24 villages in the district [54]. This underreporting seems likely due to the low social significance accorded to perinatal deaths. Hence, the service providers and female health volunteers did not find it worth inquiring and reporting perinatal deaths. This systemic fatalism (including among community health workers) has contributed to the invisibility which is certain to reduce the efforts to implement perinatal survival programmes by the local health system. Such rural areas as in Nepal are therefore likely to be overlooked. Methodological implications. The study has also a methodological advantage. A large body of evidence in perinatal survival research is based on structured surveys and verbal autopsy [91] to describe a pattern of mortality and service utilisation across socio-demographic determinants and medical causes of deaths. By comparison, this study has examined the influence and interactions in socio-cultural contexts that lead to perinatal deaths. Recently an interest is growing about the need for social autopsy, which analyses death narratives and focuses on identifying social aspects impacting perinatal deaths [92]. This research has found that indepth qualitative interviews with women and their families who have experienced perinatal deaths are possible and are an appropriate way to uncover the influences of the local socio-cultural context that contribute to poor perinatal survival. In addition, women and families in the villages indicated that being interviewed made them feel respected and valued their experiences. The limitation of this study is that the interview participants were selected purposively; the views of others may be different, such that the study lacks a wider generalisability in other regions. However, the study has provided a thorough examination of the religio-cultural context of perinatal death in the study region and has identified policy implications in implementing interventions to address the ongoing high stillbirth and neonatal death rates in rural villages. --- Conclusion Perinatal deaths are regarded as common occurrences, and religio-culturally constructed as the deaths of foetuses and neonates which have no personhood status or value. Mothers' and babies' sickness and recovery is attributed to Dewata (God)'s will, while Karma (past deeds), Bhagya (fate) or Lekhanta (destiny) are perceived as reasons behind perinatal deaths, which are religio-cultural beliefs deeply rooted in the mountain communities. These fatalistic beliefs are perceived as culturally safe, yet pose a high risk to the survival of babies when the bio-medical evidence suggests that 99 percent of perinatal deaths are preventable. The persistence of fatalism also raises the question of whether perinatal survival interventions have effectively reached the rural communities and villages. The findings of this study strongly indicate the need to invite discussions on the construction of personhood and social significance of foetus and newborn babies in the current behaviour change discourse. The findings further call for starting partnerships of medical health practitioners at primary health care level with faith-based healers and religious figures so that ways can be found to respect the lay worldviews of Dewata and Karma in health and sickness without these continuing to perpetuate poor perinatal survival in the mountain villages. --- All relevant data are within the paper and its Supporting Information files. --- Writing -review & editing: Mohan Paudel, Sara Javanparast, Gouranga Dasvarma, Lareen Newman.

17729bf9786bef39d69c58008faef16b61f6fe09

A network-based explanation of inequality perceptions

Across income groups and countries, individual citizens perceive economic inequality spectacularly wrong. These misperceptions have far-reaching consequences, as it might be perceived inequality, not actual inequality informing redistributive preferences. The prevalence of this phenomenon is independent of social class and welfare regime, which suggests the existence of a common mechanism behind public perceptions. The literature has identified several stylised facts on how individual perceptions respond to actual inequality and how these biases vary systematically along the income distribution. We propose a network-based explanation of perceived inequality building on recent advances in random geometric graph theory. The generating mechanism can * Daniel Mayerhoffer's contribution was funded by the Deutsche Forschungsgemeinschaft (DFG, German Research Foundation) -430621735. Furthermore, financial support for the paper by the University of Bamberg through the Fres(c)h grant no. 06999902 is gratefully acknowledged. We would also like to express our gratitude to two anonymous reviewers and Martin Everett for his excellent editorial work, Arndt Leininger and his students, Miriam Bömer, Bettina Gregg, Johannes Marx, Moritz Schulz, Eleonora Priori and Jan Weber as well as the participants of the Networks 2021 conference, the 9th PhD conference for the renewal of constitutional economics, the 9th ECINEQ Meeting, the 33rd annual EAEPE conference, the annual PhD conference by the Hans Böckler Foundation 2021, the 2nd Scientific Workshop by the Network for Pluralist Economics, the 8th Workshop on Complexity, Innovation and Knowledge (WICK), the Colloquium for the Advancement of Knowledge in Economics (CAKE) of the University of Utah and 28th DVPW congress, especially our designated discussants Macartan Humphreys, Claudius Gräbner and Pietro Terna which were of great help at crucial junctions of this investigation. Finally, we also thank Carsten Källner for his able research assistance. All remaining errors are, of course, ours. statistically distinguished from small-world networks, testifying to the robustness of our approach. Our results, therefore, suggest that homophilic segregation is a promising candidate to explain inequality perceptions with strong implications for theories of consumption and voting behaviour.

replicate all of aforementioned stylised facts simultaneously. It also produces social networks that exhibit salient features of real-world networks; namely, they cannot be 1 Introduction Conventional modern macroeconomics has long recognised the crucial relevance of expectations and belief-formation for aggregate dynamics (Galí 2015). In particular, beliefs about economic inequality and perceptions of social hierarchy can inform individuals in such diverse fields as consumption decisions (Duesenberry 1949;Veblen 1899Veblen [2001]]; Frank et al. 2014), redistributive preferences and voting behaviour (Gimpelson & Treisman 2018;Kim et al. 2018;Choi 2019) or subjective well-being and ethical convictions (Kuhn 2019;Clark & Senik 2010). Even in the most sophisticated behavioural models, belief-formation is, however, typically either assumed to be atomistic (Gabaix 2020) or does not systematically account for the impact of individual embeddedness within heterogeneous social contexts on those beliefs, even if social interaction is explicitly modelled (Flieth & Foster 2002;Lux 2009). We propose a parsimonious network-based model for the interaction of macro-level inequality, micro-level beliefs and the mediating effects of heterogeneous social contexts. In contrast to the assumption of deductive reasoning in orthodox models, we build on the empirically well-established notion that economic agents reason inductively and generalise from finite samples. Recent theoretical and empirical work has demonstrated the potency of this approach in explaining phenomena in such diverse fields as human probability assessment (Sanborn & Chater 2016;Chater et al. 2020) or regional inequality (Collier & Tuckett 2020). The model is both consistent with several stylised facts about inequality perceptions and the micro-level evidence on the composition of social networks. The relevance of individual beliefs is perhaps best exemplified by spelling out its political economy implications. Across income groups and countries, the public perception of economic inequality and many other macroeconomic variables is empirically wrong, often spectacularly so. Errors in those beliefs might be due to conceptually different problems: uninformed beliefs or misinformed beliefs (Kuklinski et al. 2000). Uninformed voters are ignorant about the actual state of affairs, while misinformed voters' beliefs are consistently deviating from it in one direction. The distinction is a crucial one. Uninformed voters' beliefs would cluster around the actual state of affairs and, with no systematic deviations, be correct in expectations. For uninformed voters, we only need one informed voter to tip elections under majority rule into the correct direction; a majority of ignorant individuals might nevertheless vote for the correct policy, which is now known as the 'miracle of aggregation' (Page & Shapiro 1993). However, his miraculous aggregation breaks down when we consider misinformed rather than uninformed voters with beliefs that are no longer randomly distributed but consistently tend in a (false) direction (Caplan 2011). The type of error in perceptions is thus intimately linked to the efficacy of democratic systems. For inequality perceptions, beliefs appear to be indeed the result of misinformation in this technical sense and they are consistently biased across income groups and welfare regimes. In contrast to much of the behavioural literature, we refrain from ad-hoc assumptions about possible biases, e.g., assuming that individuals tend to perceive themselves in the middle of social hierarchies (cf., e.g. Knell & Stix 2020). Instead, we assume unbiased information processing capabilities for all the economic agents. Information is, however, asymmetric and agents form estimates about aggregate variables according to their local information. We show that a parsimonious process can generate sufficiently skewed information sets to replicate the aforementioned stylised facts and generate perceived inequality levels that are quantitatively in line with recent empirical evidence for a large sample of 32 OECD countries (Choi 2019). In essence, we assume that agents (correctly) observe inequality within their local social network and (correctly) form estimates about the total population from them but still generate biased perceptions due to their network contacts not being representative for the overall population. Employing a new variant of a random geometric graph network, the assumption of income homophily alone can generate substantial misperception in line with the empirical evidence. The derived network topology also corresponds to empirically observed social networks across the world and features a small-world structure. Given the ubiquity of these topological features, our homophilic process appears to be a plausible candidate to explain the equally ubiquituous inequality misperceptions. Our contribution is thus threefold: Firstly, we compile a list of four stylised empirical facts about income inequality and its biased perception from the nascent literature on the matter. Secondly, we develop a model that simultaneously replicates these stylised facts building on homophilic linkage and unbiased individual estimates based on local signals. Our model is quantitatively consistent with empirical estimates regarding both the input income distribution and the output perceptions, in contrast to the somewhat stylised models in the extant literature that also fail to replicate the dynamic behaviour of perceptions in response to changes in actual inequality. Thirdly, the network-formation algorithm presents a novel way of generating random geometric graph types of networks which is more intuitive for many application scenarios and allows specifying a minimum degree. The remainder of this paper is organised as follows: Section 2 extracts four stylised empirical facts about inequality perception; furthermore, it reviews the evidence on empirical network topologies and individual belief formation within networks. Section 3 introduces the basic model of homophilic graph formation, reviews the main mechanisms generating heterogeneity in information sets, abd validates the model. Section 4 presents our analytic and simulative results, shows that they are consistent with the outlined stylised facts regarding network topologies as well as inequality perceptions and derives some important implications regarding heterogeneous segregation patterns across the income distribution. Section 5 concludes and discusses several promising avenues for further research, especially regarding consumption dynamics and voting behaviour. --- Related Literature Our model joins three different strands of literature. Empirical findings on inequality perceptions that a single theory or model has not yet explained constitute its main explanandum. As explanans, we develop a network model featuring the current state of research into both the social network structure of empirical networks, mainly their homophily and small-world character, and individual perceptions in networks. The family of random geometric graphs constitutes the third strand of literature as a promising methodological choice in Section 3. --- Stylised Facts on Inequality Perceptions and Middle Class Bias The empirical literature has identified four particular stylised facts for any theory of perceived inequality to be evaluated against: (i) Irrespective of their objective status, all individuals perceive themself to be in the middle of the social hierarchy (Kelley & Evans 1995;Evans & Kelley 2004); (ii) as an immediate corollary of (i), poor individuals overestimate their social position, rich individuals tend to underestimate it (Knell & Stix 2020); (iii) poor individuals tend to perceive inequality to be higher and are closer to objective inequality on average (Osberg & Smeeding 2006;Newman et al. 2018) and (iv) the evolution of objective inequality is detached from the evolution of subjective inequality, that is, increases in objective inequality do not necessarily increase perceived inequality (Kenworthy & Mccall 2008;Bartels 2018;Gimpelson & Treisman 2018;Hvidberg et al. 2020). The ubiquity of misperceptions across states and welfare regimes calls for a common mechanism independent of differences in actual inequality or institutional framework. By way of illustration, we show the empirical frequency of self-perceptions to enable comparisons to the model output in Section 4 for stylised fact (i). The data shows the empirical frequency distributions of self-reported income deciles for Germany and the US from the 1987, 2007 and 2014 wave of the ISSP Group (2016).1 Typically, Germany is considered to be the epitome of a coordinated market economy, while the US represents a liberal market economy (Hall & Soskice 2001). By contrast, the qualitatively similar densities for both countries show that the mechanism behind misperceptions should be independent of the specific welfare regime. Especially the 'middle class bias' in the self-perceptions is rather striking. For a representative survey like the ISSP, each decile should, per construction, include exactly 10% of observations and the frequency densiy should therefore exhibit a uniform density at 0.1. Instead, the frequencies display a marked peak at the middle categories, i.e., most Germans and most Americans tend to think they are middle class, even though they are objectively not. This finding holds for all considered countries in the ISSP and all considered years, apart from the three periods and two countries we selected for illustrative purposes (Choi 2019). 2 Notice, however, that the qualitative middle class bias manifests itself in quantitatively rather different frequencies throughout time and between countries. We focus on the phenomenon that is common to all considered densities, i.e., the qualitative middle class bias and leave the direct quantitative calibration of our model for further research. We find this middle class bias to be the major driver of our results, implying the other stylised facts (ii) -(iv) directly but emerging endogenously in our network model. The relevant features of this network are discussed in the subsection below. --- Empirical Social Networks Empirical networks exhibit ubiquitous and salient features that can serve as stylised facts to guide the validation of proposed theoretical graph formation processes. Probably the most prominent one is the small-world property, indicating that paths between nodes in realworld social networks are unexpectedly short. At the same time, those networks also feature high degrees of clustering. Small-worldiness has obvious implications for any contagion process, be it rumours, diseases or information, where contagion across the whole network happens much faster than our intuition would suggest (Watts 1999;Moore & Newman 2000;Kleinberg 2001). The empirical research has identified small-world features across many different social groups, including friendship networks in schools (Weeden & Cornwell 2020), corporate board networks (Kogut & Walker 2001;Borgatti & Foster 2003;Davis et al. 2003;Conyon & Muldoon 2006;Galaskiewicz 2007) and scientific and artistic collaboration (Watts & Strogatz 1998;Newman 2001;Uzzi & Spiro 2005). Given this ubiquity, it appears safe to say that a graph-generating process for social networks needs to simultaneously produce low average path lengths and large degrees of clustering to be consistent with this stylised fact. We situate our model in the random graph literature, where graph formation happens according to a stochastic process and is not the result of deliberate optimisation. Random graphs have been very successful in replicating structural stylised facts about network topologies, with the Watts-Strogatz model famously able to replicate those small-world properties (Watts & Strogatz 1998). Since the graph-generating process is, however, stochastic in nature, it does not feature explicit behavioural microfoundations. Therefore, we extend the purely stochastic notion with a behavioural ingredient, notably, that link-formation is homophilic. First introduced by Lazarsfeld et al. (1954), another salient feature of empirical social networks is homophily, the tendency of similar individuals to connect with each other. This tendency is not only an empirical curiosum but has relevant theoretical implications, e.g., for information transmission, where homophilic segregation can severely slow the speed of learning (Golub & Jackson 2012) or diminish the attention members of minority groups receive (Karimi et al. 2018). The similarity can come in many dimensions such as gender, ethnicity or socio-economic status (McPherson et al. 2001). We focus on the latter in the narrow sense of economic homophily, which is empirically well-established. One strand of literature focuses on friendship networks in schools and colleges and provides evidence significant homophily according to income or social class (Cohen 1979;Huckfeldt 1983;Mayer & Puller 2008;Boucher 2015;Malacarne 2017). Even one of the earliest contributions in the field, however, shows that homophily in socio-economic status is not fixed in time and varies with cultural norms and the importance of class distinctions (Cohen 1979). In light of this result, it appears unsurprising that we find considerable variation in implied degrees of country-level homophily in our model, perhaps reflecting cultural norms not in the structure but the degree of the graph formation process. Even for a constant degree of (economic) homophily, increasing inequality also increases segregation in the population, as then the relative distances in incomes increase and agents becoming more selective in choosing links. For geographical segregation, this effect is empirically documented (Reardon & Bischoff 2011;Chen et al. 2012;Tóth et al. 2021), testifying indirectly to the relevance of homophily as a graph-generating feature. Homophily in income also exists in social media friendship networks (Lewis et al. 2012, for a large sample of Facebook friends), where spatial segregation should not confound findings and becomes apparent in the choice of romantic partners, typically under the label of 'homogamy' (Kalmijn 1991;Kalmijn & Flap 2001). Finally, a very recent contribution by Cepić & Tonković (2020) for a representative sample of Croatian adults finds evidence for homophilic tie formation according to social class and income, with however considerable variability in cross-class ties, hinting at possible confounding factors we aim to capture with a parsimonious stochastic process. Importantly, Cepić & Tonković (2020) show that there is also strong variation in cross-class ties, though, which we show might be crucial for unbiased individual inference. A major predictor is there shown to be cross-class sociability is political participation which would, in our model, amount to the prediction that politically active individuals are also better informed on average which is indeed perfectly in line with the evidence (Campbell 2013, for a recent survey). --- Belief Formation in Networks The literature on belief formation itself appears to be much more scarce than the literature on the effects of perceptions and misperceptions. While very different in detail, the two currently dominant theories of public opinion formation suggest that the beliefs an individual holds are in a broad sense averages over the idiosyncratic messages they receive (Zaller 1992; Lodge et al. 1995). 3 This literature has focused on the specific 'averaging' individuals use to process their information sets. Regarding perception formation about societal inequality, there exist to the best of our knowledge only two analytical models so far, namely Knell & Stix (2020) and Iacono & Ranaldi (2021). Both derive biased perceptions under very restrictive assumptions, though, and need to impose some kind of 'biased averaging'. Knell & Stix (2020) assume that agents form subjective income densities over the whole support of possible income levels but let these densities be self-centered such that the mode of the distribution corresponds to their respective own incomes. While they partially succeed in replicating the four stylised facts on inequality perceptions at least qualitatively, their assumption essentially imposes the middle-class bias of stylised fact (i) ex ante and not as an emergent outcome from first principles. Iacono & Ranaldi (2021) also impose potentially biased perceptions and assume that agents only observe their own incomes as well as the minimum and maximum incomes. They continue to derive several important results on voting behaviour and show that information treatments on inequality might alter preferences for redistribution, therefore qualitatively replicating this stylised fact from the empirical literature. While the notion of local information sets appears appealing, using only the minimum, maximum and own income strikes us as unnecessarily artificial and implausible. Most importantly, being static, both models fail to make sense of the -arguably most relevant -stylised fact (iv), i.e., inequality perceptions being very persistent and not responding to changes in actual inequality. Our model is featuring this persistence by exploiting the fact that rising inequality also features rising segregation, as is also empirically established for geographical segregation (cf. the evidence discussed in subsection 2.2). We develop on the notion that information is local but assume unbiased processing with skewed information sets as implied by the well-documented homophilic social network formation on which we expand in Section 3. The psychological literature on 'social comparison theory' (Festinger 1954) supports the notion that individual self-perceptions are much more responsive to local knowledge about small groups than to information about aggregates, e.g., knowing the population average (Buckingham & Alicke 2002;Zell & Alicke 2009;Alicke et al. 2010). Thus, belief formation about inequality appears to be indeed primarily based on local knowledge. This does not imply, however, that informational treatments in the form of reported averages do not change beliefs at all. Providing information about the actual degree of inequality seems to exhibit a significant effect on redistributive preferences for Argentina, Sweden and the US (Cruces et al. 2013;McCall et al. 2017;Karadja et al. 2017), with however small and insignificant effects for Germany (Engelhardt & Wagener 2018). Finally, two recent studies for the whole of Europe and Denmark separately demonstrate that individuals indeed tend to know the income levels of their immediate friends and family rather well, with non-negligible effects on inequality and fairness perceptions as well as perceived social positions (Clark & Senik 2010;Hvidberg et al. 2020). --- Model Apart from this indirect evidence from informational treatments, there also exist several studies that measure the impact of local exposure to inequality on perceptions and redistributive preferences directly, therefore offering also direct evidence for our proposed mechanism. 4Thal (2017) demonstrates using a large-scale survey (Soul of the Community (SOTC)) that affluent Americans' perception of social conditions is largely based on extrapolation from their own neighbourhood, as the affluent within homogeneous and isolated neighbourhoods perceive social disparities to be significantly less severe. Dawtry et al. (2015) find robust evidence for the US and New Zealand that individuals base their estimate of average societal income (and other quantiles) largely on their immediate subjective experience or 'social sample'. This leads to differences in fairness perceptions and redistributive preferences, whenever the composition of social circles varies by income, as homophily strongly indicates. Kraus et al. (2017) finally demonstrate with respect to racial economic inequality that the homogeneity of the immediate social network appears to mask racial inequities, therefore also testifying to the relevance of immediate lived experience for perception formation. In a series of articles close in spirit to our approach, Chiang (2011Chiang ( , 2015a,b) ,b) exploits this notion and shows experimentally and computationally that individuals base their beliefs about inequality on local perceptions within referent networks and that income homophily has a potentially strong effect on those perceptions. While his approach is exploratory and does not account for the outlined stylised facts on inequality perceptions and empirical social networks, we provide a tractable model, readily calibrated with regards to those phenomena that is introduced below. --- Model This section provides a content-oriented presentation; a technical description following the ODD protocol is avaliable upon request. The model consists of three distinct phases run in sequential order: 1. Agent initialisation and income allocation 2. Network formation 3. Gini perception and network evaluation Each phase runs only once and phases one and two build the structure which phase three then analyses. This sequence implies that during network generation, agents adapt to others' income level. However, there is no reaction to others' linking behaviour or perception and, Model thus, the model does not feature interaction in a narrow sense. Moreover, in the model, an agent's social contacts depend on their income. We choose this direction of causality for technical reasons and because it seems empirically likely (cf. Section 2). Nevertheless, our process scheduling would also be consistent with the opposite direction of causality or positive feedback effects between income and social contacts. The model is designed that way because it focuses entirely on income perceptions given defined income distributions and network structures. Hence, both an agent's income and their social contacts remain constant for the evaluated time frame or, put differently, that the simulation outcome is a snapshot of a certain point in time. --- Agent Initialisation and Income Allocation There are 1, 000 agents in the model; each agent draws their income from an exponential distribution with a mean of λ = 1. Such a distribution normalises the empirical observed (pre-tax or market) income distributions in various industrialised countries for the vast majority of individuals (Drȃgulescu & Yakovenko 2001;Silva & Yakovenko 2004;Tao et al. 2019). Thus, one can understand the model population as constituting a representative sample of empirical populations of these countries. The upper tail of 1 to 5 % of the income distributions empirically follows a Pareto law (Silva & Yakovenko 2004). We deliberately choose to exclude this small minority from our model, since their population size would induce another degree of freedom in our model and we want to demonstrate that segregation is indeed endogenous and not driven by differences in actual income regime. We use an identical, pre-validated exponential distribution for all Monte Carlo runs and also all levels of homophily to ensure comparability between simulation runs. Agents store their true income decile for evaluation purposes, too. --- Network Formation Each agent draws five other agents to link to. Like for real-world networks, links are therefore created by agents, not imposed on them. The number of five link choices is also empirically validated, as humans tend to only know the income of close friends or family (Clark & Senik 2010;Hvidberg et al. 2020), with typically only five individuals at this closest layer of emotional connection (Zhou et al. 2005;Hamilton et al. 2007;MacCarron et al. 2016). 5The relative weight in the draws are a function of the homophily strength and the respective Model income levels. Thereby, agent j's weight in agent i's draw is denoted by w ij and determined as follows: w ij = 1 exp[ρ |I j -I i |](1) I denotes the income of an agent, and ρ ∈ R + denotes the homophily strength in income selection, externally set, and identical for all agents. ρ = 0 represents a random graph, and for an increasing positive value of ρ, an agent becomes ever more likely to pick linkneighbours with incomes being closer to their own. The exponential character of the link function ensures that those others with are large income difference become unlikely picks even at low homophily strengths. The choice of an exponential weighting function might seem arbitrary but upon closer inspection, we find that translated into the probability of i choosing j, this weighting is equivalent to the discrete choice approach developed and popularised by Manski & McFadden (1981). The homophily parameter ρ ∈ (0, ∞) is then simply the intensity of choice parameter. To translate weights into probabilities, we normalise by all weights for all agents, i.e., p ij = exp[-ρ • |I j -I i |] k∈M \i exp[-ρ • |I k -I i | ,(2) with M \ i as the set of all agents except i with size N -1.6 This formulation in (2) has a rather intuitive interpretation, with ρ = 0 implying equiprobable picks with p ij = 1/(N -1), ∀j ∈ M \ i, and thus indeed a random graph, while ρ → ∞ implies that p approaches unity for j with minimum income distance and 0 for all other j. Manski & McFadden (1981) demonstrate that the discrete choice rule above emerges naturally from random utility theory, i.e., agents maximise utility and utility can be decomposed into an observable and unobservable component. In our case, the observable component the agents minimise would be the income differences, with the unobservable part being all the attributes from which our agent in question would benefit due to their social connection. This appears to be rather intuitive, since of course income differences might be a rather salient characteristic and thus observable, while the utility from social connections might in some cases plausibly exceed Model the one derived from merely a good fit or small social distance. 7 In this sense, the weighting function in eq. ( 1) is plausibly microfounded in a utility-maximising framework and can now be considered the workhorse choice rule in behavioural macroeconomics (Franke & Westerhoff 2017). Franke & Westerhoff (2017) also survey evidence from a several lab experiments in different macroeconomic contexts that discrete choice is indeed consistent with the data, while Anufriev & Hommes (2012) and Anufriev et al. (2018) provide laboratory evidence for the discrete choice approach for financial markets. However, there might of course be other potential choice mechanisms that could provide avenues for further research on network generation that can be readily included within our proposed flexible RGG framework. Figures 3 and4 illustrate the linkage probabilities implied by the weighted draw based on the exponentially distributed income levels. As can be seen, the decay within the left tail is always more rapid than for the right tail, indicating differences in the 'selectivity' above or below a relative position. We understand 'selectivity' according to rank as the effect a decrease in income rank distance of one agent to another has on the linkage probability between them. Consequently, the local maxima of individual linkage probability densities exhibit a bi-modal shape with peaks at the highest and lowest rank but are also heavily skewed to the left, i.e., agents with the high incomes are most selective in their link picks. General selectivity increases with ρ. Notice also that largest income ranks are extremely selective in all scenarios, in some cases in some cases exceeding linkage probabilities of incomes close to the median by more than two orders of magnitude in linkage probabilities. An anonymous reviewer pointed out that individuals may form links based on relative rather than absolute income differences: For lower incomes, a given absolute gap in units of currency may mean two entirely different lived experiences, while people with high incomes may hardly notice the same absolute gap. To represent this in the linkage function in eq. ( 1), one must simply replace I i by ln(I i ) and I j by ln(I j ). Appendix C analyses this transformation of scale in detail. The altered argument in the choice function is equivalent to assuming that agents aim to minimise the percentage difference in incomes and is, therefore, a natural extension to capture potentially scale-dependent tie-formation along the lines discussed above (Törnqvist et al. 1985). Our findings from Section 4 regarding self-perceptions and aggregate inequality perceptions prove qualitatively robust; quantitatively, the major findings occur at even lower 7 Notice, however, that the derivation of the above choice rule crucially depends on the axiom of Independence of Irrelevant Alternatives (IIA) (Luce 1977), i.e., the probability of choosing between j and k being independent of the probability of choosing l. IIA might be a good first-order approximation for homophilic choice but in friendship networks, knowing one agent j might indeed increase the likelihood of knowing another agent l that is friends with j. It might thus prove interesting to extend and generalise the above choice rule to examine the effects on the network topology in further research. Selected Probability Densities for R between 0 and 899 Selected Probability Densities for R between 0 and 899 homophily levels. However, the logarithmised incomes fail to replicate the greater underestimation of inequality for richer individuals with higher income ranks. The segregation tendency is approximately symmetric for moderate to high homophily strengths, i.e., all agents are approximately equally likely to include agents below and above them in income Model rank. Since there is hardly any differential behaviour according to income rank, all agents tend to perceive roughly equal levels of inequality according to the (local) Gini, in contrast to the stylised fact (iii). Thus, absolute income differences pose the more strongly validated presentation in the present model framework. Nevertheless, the model invites empirical research into whether income homophily is based on absolute or relative differences -or some combination of both.8 R = 0 R = 99 R = 199 R = 299 R = 399 R = 499 R = 599 R = 699 R = 799 R = 899 R = R = R = R = R = R = R = R = R = R = R = 0 R = 99 R = 199 R = 299 R = 399 R = 499 R = 599 R = 699 R = 799 R = 899 R = R = R = R = R = R = R = R = R = R = The resulting network for our baseline specification is a member of the family of Random Geometric Graphs (Dall & Christensen 2002), which Talaga & Nowak (2020) showed to reproduce core features of many social networks efficiently. Specifically, we combine the notions of homophily (Boguná et al. 2004) with pre-setting node degrees (Newman et al. 2001;Newman 2009).9 However, concerning our application, we are able to simplify both approaches by pre-determination of only the global minimum degree, like in Preferential-Attachment networks, and consequently defining relative weights rather than absolute probabilities. Links are undirected and have identical weights for evaluation purposes. Agents pick their neighbours in random sequential order. If an agent i picks agent j who had themself picked i before that, the already existing link between the two agents remains untouched, but i does not pick another neighbour instead of j. Consequently, each agent has at least 5 link-neighbours (i.e. clsoe social contacts with mutual knowledge of income) but may have more. --- Gini Perception and Network Evaluation Agents know about their own income and also their social contacts' incomes. However, they do not possess knowledge about any other agent or structural features of the whole income distribution. Thus, agents judge income inequality in the population as well as their own income position solely based on themself and their link-neighbours. Besides the agents' perceptions, there is a global assessment of various network parameters in order to validate the model. Subjective inequality perceptions mirror standard Gini calculation on the level of individual personal networks: Each agent finds the mean of all income differences between themself and each link neighbour and between any two of their link-neighbours and divides Model this by twice the mean overall income of themselves and all link-neighbours. Then, the overall perceived Gini is simply the arithmetic mean of individual perceptions. To estimate their income decile, an agent compares the number of link-neighbours having a higher income than the agent themself to the link-neighbours having a lower income than the agent themself. --- Validation The simulation results of our model are in line with our theoretical expectations and we can explain their emergence in terms of the mechanisms sketched in Section 4. Moreover, we carried out sensitivity analyses that revealed no unintended consequences of changes in any relevant model feature like homophily level, number of links or actual income distribution. Thus, we consider the model design and implementation to be internally validated (Gilbert & Troitzsch 2005, p. 22) as a tool for explaining inequality perceptions in the model population. Transferring these explanations from the model to the real world requires external validation of our model. However, there are different accounts of what constitutes an explanation in the first place. The current discussion of the concept of explanations in the philosophy of the social sciences highlights two types of explanations: How-actually and how-possibly explanations, also known as candidate explanations (Epstein 1999). While how-actually explanations aim for identifying the actual mechanism driving the dynamics in a specific case, how-possibly-explanations provide mechanisms that could possibly bring about the explanandum in question (Reutlinger et al. 2018); they enquire for mechanisms that potentially cause the observed phenomenon. In case of epistemically possible how-possibly explanations, these mechanisms are in line with the knowledge about the real world (Grüne-Yanoff & Verreault-Julien 2021). Our model yields an epistemically possible how-possibly explanation of inequality perception because it "produces quantitative agreement with empirical macrostructures, as established through on-board statistical estimation routines" and also "quantitative agreement with empirical microstructures, as determined from cross-sectional and longitudinal analysis of the agent population" (Barde & Van Der Hoog 2017): Simulation outputs of a societal structure close to a small-world one with self-segregation of highest-income agents and severe underestimation of the income Gini across income levels mirror the corresponding empirical findings. Following the suggestion by Fagiolo et al. (2019), we use empirical micro-data to calibrate the model. Namely, it relies on an exponential income distribution that characterises industrialised countries. Furthermore, the extent of agents' closest layer of interaction ('Dunbar's number') that means mutual knowledge of income, their linking behaviour, and individual perception formation follows rules that are theoretically established in rational choice theory but also empirically grounded in the referenced lab experiments and surveys. The exponential weighting function from the discrete choice framework is also analytically convenient and lets us represent the probability densities of ties in closed form. This allows us to e.g. demonstrate conclusively that the combination of discrete choice in graph formation and an exponential income distribution leads to the endogenous emergence of echo chambers for top-income earners whose isolation increases in the intensity of choice ρ. 10 This empirical input calibration and output validation jointly guarantee resemblance (Mäki 2009) between our model and the real world. We develop a specific parallel reality (Sugden 2009) that features generating mechanisms for empirical findings in our reality, and hence our results present a candidate explanation for the stylised empirical facts. There may be different, more adequate, parallel realities featuring either these or even better mechanisms, despite to the best of our knowledge there being no existing models that fulfil these characteristics. Overall, the following section presents an epistemically possible how-possibly explanation of inequality underestimation that "constitutes epistemic progress on the way towards HAEs [how-actually explanations, A/N]" (Grüne-Yanoff & Verreault-Julien 2021) of the phenomenon. The model simultaneously features technical verification and external validation based on input and output measures. Gräbner (2018) considers this combination desirable albeit rarely possible for model development. Since our model features a range of proposed micro-mechanisms (e.g., on endogenously evolving segregation, cf. subsection 4.5), we also hope to inform empirical research to further examine their external validity. 10 This combination of analytical convenience that leads to internal validity and empirical plausibility that affirms external validtity is also one of the reasons why we deliberately choose not to use an Exponential Random Graph (ERGM) or Stochastic Actor Oriented Modelling (SAOM) framework (Snijders 2011, for a recent survey) but situate our model in the RGG framework: Firstly, the application of these types of models would require merging relational data with the socioeconomic status of the respective agents which is rarely achieved in practice, as De Paula (2017) notes. In our case, the problem of data availability is compounded by the fact that we require the graph data not only to report all social ties but also to identify the closest layer of emotional connection. Only there we can reasonably expect agents to exactly observe incomes as is required by our model mechanism. We are currently not aware of any dataset fulfilling these constraints but welcome any empirical attempt in this direction, as the external validity of our proposed model mechanism can ultimately only be established empirically. Secondly and more importantly, the estimated coefficient estimates and tie-level probability densities from ERGMs and SAOMs are purely phenomenological and need to be simulated by Monte Carlo techniques, while we are able to express them analytically and thus precisely determine the effect of our model parameters. We thank an anonymous reviewer for pointing us to ERGMs. --- Results The homophilic graph model will be evaluated against the five stylised facts outlined earlier. As we have shown in Section 3, we only require the homophily strength parameter ρ ∈ R + 0 , the number of links each node chooses C and the income distribution as inputs for initialisation. Since link formation is stochastic, we run the graph formation routine 100 times and report model averages, if not otherwise indicated. Most of the results are obtained with initialisation by the same set of incomes generated from an exponential distribution with location parameter λ = 1 and 1, 000 observations for C = 5 choices of link-neighbours each agent undertakes to make results comparable for variation in ρ. The overall Gini coefficient for these 1, 000 randomly generated income levels is with G ≈ 0.50701 within 1.5 % deviation from the theoretical Gini of G = 0.5, indicating that the observed effects of ρ are not artefacts of initialisation. Results are also robust for different numbers of links chosen per node, as long as C N . We also evaluated the null model for ρ = 0, where we did not find any significant deviations in the mean inequality perceptions and the actual overall inequality of G = 0.5, testifying to the robustness of our approach.11 --- Small-Worldiness We use state-of-the-art methods to test for the existence of small-world features against an appropriate network null model, here an Erdős-Rényi (ER) graph with the corresponding number of nodes and mean degree first introduced by Erdős & Rényi (1960). ER graphs appear to be the correct null model for two reasons: Firstly, they are a particular case of our model with ρ = 0, i.e. without homophily. Hence, the procedure allows isolating the impact of homophily and examining whether the model indeed tends to yield 'smaller worlds' for homophilic formation in the precise sense outlined below. Secondly, we can establish an exact one-to-one correspondence between a graph generated by our model and the ER model, as ER graphs only require the number of nodes and a linkage probability for initialisation that is fully determined by the mean degree of the correspondent network. Other prominent generating models such as Watts-Strogatz graphs have additional degrees of freedom like the 'rewiring probability' without clear correspondence to our model. We construct three summary metrics to test our model against, as introduced by Humphries & Gurney (2008). Firstly, Λ measures the deviation in average path lenghts L, that is, Λ i := L i L ER i ,(3) where L i is the average path length of network i with L ER i as the average path length of a correspondent ER graph with equivalent number of nodes and mean degree. 'Smallworldiness' requires Λ ≈ 1, as our network should not deviate too much from the random benchmark that indeed features short paths. E[L ER i ] = (log[N ]-γ)/(log[k] ))+1/2 with γ as Euler's constant, N as the number of nodes and k as the average degree can be analytically derived which we use in our calculation (Fronczak et al. 2004). Secondly, we also require a high clustering coefficient which an ER graph cannot generate. The deviation in the clustering coefficients Γ is defined as Γ i := C i C ER i ,(4) with C i as the clustering coefficient of graph i and C ER i as the clustering coefficient of the corresponding ER graph. Here, again, analytical results are available which we utilise, mainly that E[C ER i ] = k/N with again k as the average degree and N the number of nodes (Watts 1999). Since ER graphs typically do not exhibit clustering, we require here that Γ i > 1 for a small-world to be present. Finally, we use a summary measure Φ introduced by Humphries & Gurney (2008). We define Φ as Φ i := C i C ER i / L i L ER i = Γ i Λ i .(5) Humphries & Gurney (2008) show that Φ i features desirable statistical properties when confronted with the conventional Watts-Strogatz model for graph formation and shows a unique maximum between the extreme cases of a random network and an ordered lattice. This is in line with our intuition that small-worldiness results from the interaction of order (in the form of high clustering near the lattice) and randomness (in the form of the random graph featuring low average path lengths), as shown by Watts & Strogatz (1998). We require Φ > 1 for small-worlds. Note that Φ > 1 is an immediate corollary of the two requirements Γ > 1 and Λ ≈ 1, but Φ > 1 does not imply the two individual requirements. We call the first sufficient condition 'strong small-worldiness' and Φ > 1 with a violation of either --- Results Γ > 1 or Λ ≈ 1 'weak small-worldiness', where we now only require normalised clustering to increase faster than average path lengths. Note: The Figures report violin plots for the relevant statistics for 'small-worldiness'. The average path length is significantly higher than the ER benchmark for all depicted ρ, indicating violation of the 'strong small-worldiness condition'. Normalised clustering coefficients are for ρ > 1 significantly higher than the ER benchmark and increase at a much faster rate than average path lengths, indicating that indeed the 'weak small-worldiness' condition is fulfilled. The ER benchmark is nested in our model for ρ = 0, as is also readily visible from the fact that both Λ ≈ 1 and Γ ≈ 1 for ρ = 0. We indeed find that homophily induces path lengths to grow significantly above this ER benchmark. Normalised clustering coefficients, however, increase much more rapidly with homophily than average path lengths, demonstrating that our model can achieve relatively high clustering without simultaneously increasing path lengths in the same way. The proposed process thus violates the strong condition but fulfills the weak condition for small-worlds and is therfore broadly in accordance with the topological patterns found in real-world social networks. We note further the symmetry to the canonical Watts-Strogatz approach (Watts & Strogatz 1998). While we build on a random network with short average path lengths and interpolate to the desired high clustering through homophily, Watts and Strogatz start from an ordered state with high clustering and approach the random graph benchmark by rewiring to generate shorter average path lengths. Arguably, however, our approach starts from a plausible and empirically well-established behavioural principle in contrast to the purely stochastic process in the Watts-Strogatz world without such behavioural foundations. Besides providing empirical validation, this finding might also point to relatively rapid contagion throughout the homophilic network, be it in the form of rumours or 'expenditure cascades'. --- Results --- Perceived Social Hierarchy and Middle Class Bias For unbiased hierarchy perceptions, the reported frequency of perceived social position would coincide with the actual positions. Unbiased perceptions thus entail reported perceived positions of equal frequency, as they coincide with the actual population shares. As we show both analytically in Appendix B and by simulation, perceived social positions for homophilic graph formation are far from the equiprobable benchmark. We find a tendency of the vast majority of individuals to place themselves in the middle of the perceived hierarchy, in line with the empirical evidence. We prove that the tendency exists for all ρ ∈ (0, ∞). Its strength is a function of ρ, though, as we show exemplarily in Figures 8 to 11. The figures plot the empirical densities of income ranks which the respective the individuals perceive to hold. For ρ = 1, the tendency is relatively weak, while for ρ = 4, ρ = 8 and ρ = 14, the densities display a distribution that notably peaks at the centre. In fact, the displayed densities indeed seem to feature all the salient features of the densities of empirical perceived social positions, as shown in Choi (2019) and also in Figures 1 and2 Note: The Figures report the perceived social positions for ρ ∈ {1; 4; 8; 14} with 10 bins each. All Figures exhibit significant deviation from the benchmark with equal frequencies. The tendency for individuals to place themselves in the middle of the income hierarchy is, however, only apparent for the middle and right panels, indicating that a homophily strength ρ of 1 might be too low to replicate the empirically observed tendency. For ρ = 4, 8 and 14, the densities approximate the empirical densities rather well, though. Notice that this a necessary outcome of homophilic graph formation under very mild and general conditions and based on a well-established utility maximisation framework, in contrast to models that take this tendency as an assumption. The latter strand of literature has typically taken a bounded rationality stance on the issue and argued that it is failures in information processing which explain the persistent errors in perceptions of social positioning. Our model replicates stylised fact (i) purely by virtue of the network formation process. In contrast to the literature on bounded rationality, we can hence show that stylised fact (i) is consistent with purely rational actors that form correct beliefs based on their available infor-Results mation, as long as homophilic graph formation constrains their information sets. Our model thus entails very different policy implications to improve self-perceptions. Since information processing is assumed to be correct in our model, information treatments, i.e., increasing the information received from nodes with heterophilic incomes, have mitigating effects on perceptions. Influencing information processing itself, as implied by the established models, is arguably a much harder task for policy. Figure 12: Errors i show the difference between perceived position q i and actual position a i for all individuals i, and ρ = 4. The superposed line corresponds to i = 0.5 -a i or the belief for all individuals to be in a median position of the income distribution. Except for the boundary regions close to the minimum and maximum income, the theoretical fit approximates the trend in the data reasonably well. This indicates that the trend to the median is indeed present for the vast majority of the population. An immediate corollary of the population perceiving themselves to earn the median income is the tendency for rather poor individuals to overestimate their position and the rich to underestimate it, as all perceive themselves to be in the middle. Hence, the fit for the median perception tracks the trend in the simulations reasonably well for the vast majority of observations (cf. Figure 12). As we discuss in more detail in Appendix B, there is no tendency to the median for the left and right tail of the distributions which the simulation results reflect, too. Indeed, approaching the minimum or maximum improves the accuracy of individual estimates. The intuition for this is quite simple: The poorest and the richest individual will always correctly perceive their social position, independent of ρ ∈ R + 0 . The rationale for this is that the actual minimum (maximum) of the whole will Results always be the minimum (maximum) of any potential non-empty subset of the population. Apart from such boundary effects, however, we indeed replicate stylised fact (ii) insofar as the poorer half of the population seems to overestimate their social position, while the richer half underestimates it. This finding is in line with the empirical evidence and suggests that total whole population tends to underestimate the degree of inequality, as we will show in the upcoming subsection. --- Perceived Individual Inequality + ρ = 8 + ρ = 4 + ρ = 1 Figure 13: Plot of inequality perceptions against the income rank. Almost all individuals underestimate true inequality with a Gini of 0.5. Degrees of underestimation vary, though, where bias increases approximately monotonically in income rank. The intuition for this is that homophilic graph formation lets unweighted inequality (absolute income differences) increase only linearly in income rank, but the reference standard (mean income) increases exponentially. We define perceived inequality as the Gini coefficient calculated over the perception set of a given individual i. In Figure 13, we plot those perceived Ginis against the income ranks of our individuals with a higher rank indicating a higher income. In line with stylised fact (iii), we find that inequality perceptions decrease approximately monotonically in income rank, while almost all individuals underestimate the actual degree of inequality significantly. As a result of our homophilic graph formation process, perceptions are most accurate for the poorest which either over-or underestimate actual inequality of G = 0.5 slightly. The Gini coefficient is conventionally defined as the ratio of (unweighted) mean differences in Results the incomes within the perception set of an individual to twice the mean income within this group. Homophilic graph formation now lets those unweighted mean differences increase linearly at most, while the mean incomes increase exponentially due to the exponential distribution by which incomes are initialised. As a result, the ratio falls almost monotonically. This results is not only plausible due to its accordance with stylised fact (iii) but might also correspond with the empirical evidence on perception formation. One of the most prominent hypotheses on perception formation from stimuli is the Weber-Fechner law (Fechner 1862) which indicates that perceived differences in stimuli need to be proportional to the baseline of a given stimulus to be recognisable. The phenomenon is well-established not only for sensory stimuli (Formankiewicz & Mollon 2009;Pienkowski & Hagerman 2009) but also finds use in marketing research on price responses (Sirvanci 1993;Snell et al. 1995). In this framework, one can also understand a decreasing perceived Gini as the change in stimuli (the unweighted differences in incomes of the perception set) do not increase in the same way as the baseline of stimuli (the mean incomes of this perception set) and is thus also consistent with the psychological microevidence. The dashed vertical lines correspond to the empirical sample minimum and maximum, while the bold line corresponds to the sample mean. We find that varying the homophily ρ parameter can fully quantitatively account for the variation in empirical perceptions. --- Results --- Perceived Global Inequality For further validation, we also examine whether our graph generating process can quantitatively replicate empirical perception patters. We use the mean, minimum and maximum for inequality perceptions on a national level calculated yearly for a large sample of 32 OECD countries in a 30 year time-span by Choi (2019).12 Over all countries, they find a minimum perceived Gini of G min = 0.1276, a mean perceived Gini of G mean = 0.1708 and a maximum perceived Gini of G max = 0.2534. In analogy to their empirical results, we average over the Gini perceptions of all individuals. As we show in Figure 14, we find that our process can fully account for their empirical findings and the variation between inequality perceptions by only varying the homophily parameter ρ. We also note that the sample average of national inequality perceptions implies a homophily degree ρ ∈ [8; 9]. Yet, our findings imply considerable cross-country variation in homophily that ranges between ρ ≈ 4 to ρ ≈ 14. Apart from extremely low homophily level, increases in actual inequality induce a much lower increase in perceived inequality. For moderate and large degrees of homophily, the schedule reaches a plateau rather quickly, i.e., perceived inequality responds extremely slowly to changes in actual inequality. --- Results --- Perception Dynamics + ρ = 8 + ρ = 4 + ρ = 1 To analyse perception dynamics, that is, the reaction of inequality perceptions to changes in actual inequality, we need to initialise the model with another distribution, as the exponential has a fixed Gini of about 0.5, irrespective of its precise parametrisation. We use the log-normal as another benchmark and vary the dispersion parameter σ to simulate changes in the Gini coefficient which is another distribution typically used to describe the skewed nature of empirical income distributions (Knell & Stix 2020). As we see, apart from implausibly low degrees of inequality, changes in actual inequality cause far less than a one-to-one change in perceived inequality. Especially for higher degrees of homophily, we find that the schedule quickly reaches a plateau, where inequality perceptions are now extremely persistent with respect to increases in actual inequality. Our model thus is consistent with stylised fact (iv) as our last test of validity. --- Results The persistence in perceptions occurs because homophily becomes more binding and segregation stronger when actual inequality increases. This mechanism leads ceteris paribus to a decrease in perceived inequality which offsets a direct impact of objective inequality on subjective perception. Compare, for illustration, the two regimes close to a completely egalitarian income distribution near G = 0 and relatively high degrees of inequality near G = 0.5. The egalitarian state is close to a random network, as homophilic segregation presupposes income differences. Small changes in actual inequality are thus not strongly reflected in segregation and almost fully impact perceived inequality, leading to a one-to-one correspondence of perceived and actual inequality in this neighbourhood. For large degrees of actual inequality and large homophily, changes in actual inequality immediately impact segregation, leading to a plateau and very persistent perceptions. Notably, this mechanism is not only consistent with the empirical evidence in terms of its emergent outcome; several recent studies by Reardon & Bischoff (2011); Chen et al. (2012) and Tóth et al. (2021) examine the mechanism directly and show that economic inequality tends to increase (spatial) segregation. A fruitful avenue for further research could be the time-scale on which this channel works, with more laggard segregation responses obviously decreasing the space for inequality-enhancing policies. --- Segregation Patterns We measure segregation as the proportion of links an individual i has in their own decile as ∆ i as one particular way to measure 'selectivity' without access to behavioural linkage parameters. This constitutes a straightforward but standard way to measure segregation and is easily transformed into normalised measures of segregation like the E-I index Ξ i which is defined as the difference between the share of between-group links and the share of within-group links (Bojanowski & Corten 2014). 13 Figure 16 plots the simulated segregation statistics as well as a theoretical fit for ρ = 4. For analytical convenience, the superposed red line plots the probabilities that an individual chooses another agent to link to within their own decile as a first pick, so the total choice set consists of 999 other individuals, and does not account for the possibility that other agents already link to the agent in question, in contrast to our algorithm. Appendix A details the derivation. The goodness of fit demonstrates that these incoming-links do not exhibit a significant effect on segregation patterns and tend to average out in the aggregate, showing that our analytical approximation is indeed reasonable. Segregation exhibits two distinct patterns along the rank distribution. Firstly, we find that segregation exhibits a skewed U-shape and increases, especially for the richest decile, Figure 16: The figure plots our segregation measure, measured as the proportion of links of a node to nodes in the same decile, along the rank distribution. The theoretical fit is obtained for the assumption that nodes choose their neighbours themselves without other nodes choosing links incoming to them. The goodness of fit shows that this is indeed a reasonable assumption. Segregation exhibits distinct and non-trivial patterns both regarding global as well as local maxima. which is almost completely disconnected from the other groups. In this sense, our graph formation process endogenously creates echo chambers for the richest whose information sets do not cover the poorer population at all. This results from the fact that the richest part of the population is extremely selective in choosing their link-neighbours, as we have shown in Section 3. Secondly, we also find a rather strong variation together with local maxima within deciles. This finding might be, however, spurious and a partial artefact of boundary effects at decile boundaries. As Appendix B shows analytically, individuals will choose those sets of link-neighbours with the highest probability that are distributed symmetrically around them in rank. Thus, individuals exactly at the decile boundary will most likely select a set with half of their neighbours across the boundary. Individuals closer to the centre of a decile, on the other hand, will by the same token choose with highest probability link-neighbours within their own decile. Arbitrarily pre-defined group boundaries can thus create within-group variability in commonly used indices like the E-I index that nevertheless exhibits desirable statistical features at an aggregate level (Bojanowski & Corten 2014). These findings extend well beyond income deciles, as variables like age group, place of living, gender, education or ethnicity are likely strongly correlated with income. Studies using E-I type indices to detect homophily in other variables might hence create spurious results if income homophily Results is also present. The relevance of such boundary effects has increasingly also been recognised in applied work (Hvidberg et al. 2020). Whenever dimensions have a cardinal scale like income, it might therefore prove more fruitful to use a rolling-window type of estimation, where within-groups are defined in relation to the individual in question, such as a fixed number of income ranks or a fixed income rank interval around theirs. For non-biased individual samples, one would expect agents to both estimate global inequality correctly in aggregate and also locate their true income quantile. However, homophily triggers link selectivity and hence biased samples which in turn causes inequality perceptions based on an agent's income level and rank (cf. Figure 17) --- Summary of Generating Mechanisms Selectivity in link formation depends on global income inequality. Furthermore, agents whose income is further from the global median income are more selective in their linkneighbours and so are agents with the higher income ranks, as an artefact of the cut-off in the exponential selection function at the low end of the income distribution (cf. the skewed Discussion U-shape in Figures 3 and4). Such link-neighbour selection generates personal networks for each agent in which this agent tends to have the median income and where income rank differences are relatively small. Moreover, the extent of relative income differences in one's personal network now depends on the characteristics of the agent in question. Firstly, the impact of link-neighbours with great rank differences to the perceiving agent is larger if this perceiving agent and consequently the majority of link-neighbours have a low income themselves since local inequality calculations weight income differences by the local mean. Secondly, agents close to the global income distribution median ceteris paribus perceive lower inequality levels, for the greatest rank distances tend to be smaller in these cases. Overall, in a homophilic linking regime, the complex interaction of actual income inequality and of individual absolute income and distribution rank cause biases in income level self-rating and inequality assessment that aggregate to biased underestimation of inequality. Due to the interplay of factors that feed into individual selectivity in choice of link-neighbours, the relation between objective income structure and individual perceptions is non-monotonic and not trivial but requires case-based assessment. --- Discussion Our parsimonious model provides an epistemically possible how-possibly explanation of the stylised empirical facts regarding inequality perceptions that we identified in the literature. Individuals who evaluate their immediate social environment without bias can misperceive their own rank in the overall income distribution as well as global inequality. Homophilic formation of the immediate environment suffices to fully explain the discrepancy between actual and perceived inequality since a rising level of actual inequality causes higher selectivity in link-formation. Moreover, the further away someone's income rank is from the global median and the higher their income, the more selective they are in their choice of link-neighbours. Thus, public misperceptions are not necessarily driven by limitations in information processing, e.g. a behavioural tendency to place oneself near the median of social hierarchy, but by limited information sets the individuals exhibit for inductive reasoning. The seemingly subtle distinction between constraints on information processing and information sets carries important policy implications: When it is the limits of available information and not limits in cognitive ability driving misperceptions, informational treatments may be successful, as also the empirical literature suggests (Cruces et al. 2013;McCall et al. 2017;Karadja et al. 2017). Such treatments can either consist of delivering information about income inequality itself or facilitating the formation of more diverse contacts in order to overcome the segregation by income that our model finds. In other words, this means breaking up echo chambers that are caused by humans drawing confidence in their beliefs only from repeated observations while ignoring a potential lack of diversity in sources (Foster et al. 2012;Schwarz et al. 2016). Educating individual citizens about their information deficit and providing ways of overcoming it is important from a democracy theory perspective. For example, (Rawls 2005, p. 224) requires "presently accepted general beliefs" as basis for arguments in the public forum. However, while one can asses the income inequality objectively without any room for disagreement if using all globally available information, citizens who work only with their individual information will agree on a belief about the Gini that underestimates its actual value. Hence, the lack of individual information access inhibits deliberation about the level inequality and its changes, e.g., in response to past policy measures. For the first time, we are able to infer the composition of these reference groups from readily available observational data on perceived inequality to inform both empirical investigations as well as more comprehensive model-building in other regards. Directly investigating perception networks might provide a possible remedy for the problem that identification of interaction effects within survey data in the form of time series is hindered by sample sizes that are typically one or two orders of magnitude too low to distinguish noise from true interaction (Alfarano & Milaković 2012). Our main empirical prediction is that the homogeneity of social groups, the fraction of links to agents within the own income decile, roughly follows a U-shaped pattern with a massive decrease in diversity for the richest and (a quantitatively much more modest one) for the poorest agents. This finding might point to an endogenously emerging 'elite discourse' with almost no transmission of information to the poorer 90% of the population. Our cross-country analysis shows that there exists considerable variability in implied homophily levels. There are several possible candidates to explain this variability, such as cultural norms, diversity in media and political representation or spatial segregation. Regarding spatial segregation patterns, Thorstein Veblen made the farsighted observation as early as 1899 that urbanisation should increase diversity in social contacts, since cities are the place "where the human contact of the individual is widest and the mobility of the population is greatest" (Veblen 1899(Veblen [2001]], p. 66). Thus, perceived inequality should ceteris paribus be higher in urban areas resulting from the higher average income diversity per perception network, a testable hypothesis and thus a possible avenue for further research in spatial economics. This is also what the rather scarce existing evidence for Vietnam and Central and Eastern Europe suggests (Mahajan et al. 2014;Binelli & Loveless 2016). In this way, spatial and perception network segregation might therefore overlap and interact (Newman et al. 2018;Tóth et al. 2021), and policy affecting the allocation of land could thus also exhibit unintentional effects on perceptions. We leave detailed analyses on these determinants for further research. In terms of theory, our empirically validated random geometric graphs might provide an ideal microfoundation for theories of consumption as dependent on the relative income position and for which shocks that affect local income compositions lead to 'expenditure cascades' (Duesenberry 1949;Veblen 1899Veblen [2001]]; Frank et al. 2014). This new mechanism might shed light on the disputed link between economic inequality and growth. We will address these questions in further research. Finally, our model presents a way of generating random geometric graphs defining both the distribution of the feature that determines linking probability between any pair of nodes and a minimum degree value for each node. Put differently, we apply a Barabási-Albert (1999) Preferential-Attachment type procedure, which is intuitive for social scientists, to features other than degree and get network graphs that can be analysed using readily available methods from random geometric graph theory. To the best of our knowledge, there is no such way yet. While it is reassuring that a scale-transformation to a log-scale delivers the same salient 'middle-class bias' as our baseline specification, log-transformations in general strike us as a very parsimonious way to capture scale-dependence in choice. This is not only relevant for inequality perceptions but for essentially all variables and features where perception of stimuli is plausibly dependent on scale. In general, it is possible to apply the generating procedure to features other than income that exhibit different distributional patterns. This approach will hopefully inspire future studies of expectation formation, e.g., regarding inflation or business sentiment. In these fields, identification of the relevant perception networks might be a crucial step to bring macroeconomic theory currently mostly building on atomistic rational expectations and empirical studies, that find little support for those types of expectations, closer together (Pesaran & Weale 2006). Hence, we also provide a toolkit for analysing the impact of homophily regarding any specified feature on network generation (and potential interactions on the resulting network) given a particular distribution of this feature that is well-grounded in the behavioural economics literature. In sum, we anticipate our theoretical framework to generate numerous avenues for further studies both theoretically, regarding graph-and expectation formation, as well as empirically, pertaining to the determinants of homophily and possible policy measures, to information transmission and to the effects of inequality on aggregate consumption. Analogously, we get for d < 0 w ij = exp[-ρ log(1 -((R + d)/N ) -log(1 -(R/N )) ] (13) = exp[log N -R -d N -ρ ) -log N -R N -ρ ] (14) = N -R -d N -R -ρ (15) = N -R N -R -d ρ (16) To translate w ij into probabilites, we need to normalise by all weights. Note that this is still a (close) approximation of the probabilities of link-formation of a given node i. Nodes draw their C link-neighbours from the set of all neighbours. This implies that draws are not independent, as we assume here. Since C N , however, the effect is marginal. The approximation for the probability below, however, seems to perform quite well which we verify in our subsection on segregation. The probability p that i chooses j as a link-partner can therefore be approximated as p ij (N, R, d) ≈    N -R N -R-d ρ ( -1 d=-R+1 N -R N -R-d ρ + N -R-1 d=1 N -R- d N -R ρ for d < 0, N -R-d N -R ρ ( -1 d=-R+1 N -R N -R-d ρ + N -R-1 d=1 N -R- d N -R ρ for d > 0. Notice that the function behaves as expected and is monotonically decreasing in |d| ∈ N + . The strength of selection also increases monotonically in the homophily parameter ρ. For ρ = 0, we recover the equiprobable case without any decay. The precise functional form of the decay for ρ ∈ R + is, however, far from trivial and changes along the rank distribution. The right tail of the correspondent density is always a power transformation of a linear function, whereas the left tail for any given R is a power transformation of function with hyperbolic decay. In this sense, all nodes are more 'selective' regarding individuals that are poorer than regarding the richer part of the population. To see this, compare the decay for the minimum and the maximum of the distribution for ρ = 1 as a special case. For R = 0, p ij ∝ 1-(|d|/N ) with linear decay in |d|, as there exists only a right tail, while for R = N -1, p ij ∝ 1/(1 + |d|) which decays extremely fast in |d| by a power function, as there exists only a left tail here. In this sense, the richest individual is far more 'selective' in choosing their (poorer) link-neighbours than the poorest individual choosing their (richer) ones. The theoretical expected segregation index we compare against our simulation results can be straightforwardly computed from those probabilities. Let δ i be the set of nodes that are in the same group as node i such as an income quantile. The probability to connect with a link-neighbour pi can then again by approximated as arg min θ ij I k ∈θ ij |I k -I i |.(19) It remains to be shown that this minimisation leads to the choice of a set θ ij for which I i is the median value. The median requires the same number of values above or below I i in θ ij . With M links for node K i of income rank R and M even, this requires M/2 values above and below I i . For I i as the median being minimising for the absolute distances, this requires i) that there exists no node with rank R + M/2 + 1 such that their income distance to K i is less than the income distance from node K i to the node ranked R -M/2. If i) is violated, the node with rank R + M/2 + 1 is part of the distance-minimising set and thus, I i is not the median of θ ij . The symmetrical condition ii) requires that there is no node with rank R -M/2 -1 such that its distance to K i is less than the distance of K i to the node with rank R + M/2. In terms of a quantile function, we require φ( R + M/2 + 1 N ) -φ( R N ) > φ( R N ) -φ( R -M/2 N )(20) and φ( R N ) -φ( R -M/2 -1 N ) > φ( R + M/2 N ) -φ( R N ).(21) Rearranging yields φ( R + M/2 + 1 N ) + φ( R -M/2 N ) > 2φ( R N ) > φ( R + M/2 N ) + φ( R -M/2 -1 N ). (22 ) Expressing the left-hand side of inequalities for a generic distribution in ( 22) for an continuous exponential such that R/N ≈ p and substituting the quantile function, we require -log[1 -(R + M/2 + 1)/N ] λ + -log[1 -(R -M/2)/N ] λ > 2 -log[1 -(R/N )] λ(23) The condition R/N ≈ p presupposes N to be sufficiently large for the discrete realisations of the sample to approximate the quantiles of the continuous exponential distribution. We find this condition fulfilled for several numerical experiments. It is easy to see that the left-hand side condition in ( 22) is fulfilled for a quantile function whose first derivative is monotonically increasing which is the case for dφ λ (p)/dp = 1/((1 -p)λ) for p ∈ [0, 1) and λ > 0. We can also show this by manipulation of ( 23 N - R -M/2 N + (R + M/2 + 1)(R -M/2) N 2 -1 + 2 R N - R 2 N 2 < 0 (26) - 1 N + R -M/2 -(M/2) 2 N 2 < 0 (27) R -M/2 -(M/2) 2 -N N 2 < 0.(28) Since R ≤ N per definition, condition ( 28) is trivially fulfilled. Notice that this implies for an exponential initial distribution, I i cannot be below the median in the most likely set. The right hand-side of inequalities ( 22) is a bit more demanding. Stating the condition in terms of the quantile function for an exponential, we get 2 -log[1 -(R/N )] λ > -log[1 -(R -M/2 -1)/N ] λ + -log[1 -(R + M/2)/N ] λ .(29) Simplifying yields (1 -(R/N )) 2 < (1 -(R -M/2 -1)/N ) • (1 -(R + M/2 -1)/N ) (30) (1 -(R/N )) 2 < (N -R + M/2 + 1)(N -R -M/2) N 2 (31) (N -R) 2 < N 2 -RN -N M/2 -RN + R 2 + RM/2 + N M/2 -RM/2 -M 2 /4 + N -R -M/2 (32) 0 < N -R -M/2 -M 2 /4 (33) R N < 1 - 1 2 M N - M 2 4N . (34 ) For our discrete sample, F λ (I i ) ≈ R/N which reveals that condition (34) is only a slightly more demanding condition than boundary condition (18) that guarantees the possibility of I i being a median in the first place and only differs by M 2 /4N . Since we typically assume M N , this term vanishes. Indeed, for a realistic baseline scenario with N = 1, 000 and M = 5, the condition is fulfilled for the poorest 99% of the population and thus for the vast majority. Together with the lower boundary condition (18), the tendency to place themselves in the middle should exist for about 98% of the population and thus the vast majority. Minimising absolute deviations for an exponential income distribution and M N thus entails choosing sets that let I i be the median of θ ij ∪ I i for almost all I i . While the strength of this mechanism will of course be dependent on ∂p ij /∂ I k ∈θ ij |I k -I i |, the median is the most likely outcome for any homophilic network as the perceived quantile for the vast majority of nodes. Note: The Figures report the perceived social positions for ρ ∈ {1; 4; 8; 14} with 10 bins each and for a choice function with log incomes in its argument. All Figures exhibit significant deviation from the benchmark with equal frequencies. While the tendency is apparent in all panels, its strength expectedly increases and perceptions are more narrowly clustered around the middle categories the higher ρ is. homogeneous inequality perceptions for all considered ρ ≥ 4. For low ρ, the behaviour of local Ginis is thus broadly consistent with one aspect of stylised fact (iii), namely that perceived inequality tends to decrease in income rank, as is also shown in Figure 22 for ρ = 1. However, poor agents then drastically overestimate inequality in violation of the second aspect of stylised fact (iii) that (almost) all agents somewhat drastically underestimate inequality. Heuristically, the behaviour of the local Gini coefficients is a direct consequence of the behaviour of an exponential income distribution on a log-scale. Incomes increase locally linear in rank around the mean income (of λ = 1) but increase much faster superlinearly near the upper and lower tails of the distribution, as Figure 23 shows. + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + This shape of the distribution of logarithmised incomes implies that the agents with income at the lower tail will have a relatively strong probability of observing incomes around the mean, where income ranks do not change inclusion probabilities very much. Since these values are, from the perspective of low-income agents, extreme values, this higher probability of observing incomes within this locally linear region translates into higher expected inequality perceptions, as is evident from the boundary effects in Figure 22. A symmetric argument applies to the upper tail of the distribution, although with a more attenuated effect, since the mean income is closer to the maximum value in income rank due to the skewness of the exponential. Hence, the values around the mean are not as extreme from the perspective of the agents with maximal incomes, leading to a less pronounced increase in upper boundary inequality perceptions. Agents with log incomes located in the locally linear region exhibit the strongest tendency to perceive incomes close to them in rank and exhibit the most pronounced dislike of extreme perceptions at the upper and lower tail. In this sense, the bias against extreme values increases with decreasing distance to the mean income which indicates that inequality perceptions decrease until the mean income is reached and increase afterwards. Increasing ρ then disproportionately affects extreme distances due to the exponential nature of the weights, mitigating any differences in perceptions caused --- Appendix A Linkage Probabilities for Homophilic Networks Heuristic Derivation. Linkage Probabilities. Consider an arbitrary node K i indexed i ∈ 0, ..., N -1 as their rank R increasing in income that is part of a graph G with N nodes characterised by adjacency matrix A. Let I i denote their income, where f λ (•) defines the PDF of a exponential probability distribution defined over the real half-line (0, ∞) with parameter λ > 0 and F λ (•) the corresponding CDF. The quantile function for any population share p and with parameter λ > 0 for an exponential distribution is given as We assume without loss of generality that λ = 1 for normalisation. Calculated ρ values therefore need to be scaled up by the inverse of the mean income, λ -1 for empirical application. The quantile of a node with income I i can be approximated by their rank R, such that p ≈ R/N as a discrete approximation of the continuous probability density which holds for large N . We want to derive the probability that a node i with rank R ∈ N + 0 connects to a node j with a distance of d to node i. Expressing the weights as defined in Section 3 now in the form of quantiles, we get Assume first that d > 0, that is, j is richer than i. Simplifying the weights yields for d > 0: Appendix B Perceived Quantiles in Perception Networks Proof Sketch. Pure Homophily implies a Tendency to the Median in Perceived Quantiles. Consider an arbitrary node K i indexed i ∈ 0, ..., N -1 in a graph G characterised by adjacency matrix A. Let I i denote their income, where f λ (•) defines the PDF of a exponential probability distribution defined over the real half-line (0, ∞) with parameter λ > 0 and F λ (•) the corresponding CDF. Let M be the number of links of node K i with M even. This leaves us with N -1 M = S possible permutations of link-neighbours. Assume further for Let now θ ij be an arbitrary realisation of a permitted set of incomes of nodes to which K i linked, indexed by j out of the set of permitted sets Θ i with Θ i = {θ i1 , ..., θ iS } and size S. Assume further that all incomes in θ ij are distinct. If link formation is independent of I i as the sole characteristic differentiating K i from all other nodes, all sets θ ij of the same size M are equally likely with probability 1/S by extension, since K i connects to any other node with equal probability. This would be the case for both standard preferential attachment models as well as ER random graphs. In our model, the probability p ik that A ik = 1 depends negatively on the absolute distance |I i -I k |, such that ∂p ik /∂|I i -I k | < 0. By linearity, the probability p ij of node i to have θ ij as their chosen set of incomes to which she is linked decreases in the sum of absolute differences, that is, It follows, that p ij as a local probability of a set of a given length being chosen by homophilic preferential attachment is maximised for a minimisation of I k ∈θ ij |I k -I i |. Since the benchmark without homophily is equal probability of 1/S for all sets of a given size M , this condition also maximises the global probability that this set is chosen for a given size M . Formally, the minimisation problem chooses a set or sets θ ij such that Appendix C Linkage Based on Logarithmised Income --- Differences In this appendix, we discuss the case where agents seek to minimise relative rather than absolute income differences in tie formation, i.e., weights for tie-formation are inversely proportional to the absolute distance in log income. Agent j's weight in agent i's draw wij is thus determined by The scale-transformation by logarithmising tends to offset the property of the exponential income distribution to exhibit much higher (absolute) income differences in its upper tail than in the lower parts of the distribution, since the natural log has negative second derivative. For moderate to high levels of ρ agents will have a strong tendency to choose an equal number of agents above or below them in income that is roughly homogeneous across the income distribution (apart from agents located at the boundary). For self-perceptions, this implies a 'middle-class bias' per stylised facts (i) and, by extension, (ii), as is also readily verified by simulation with the results below in Figures 18 to 21. Logarithmising income in the weight function as in eq. ( 35) bears enormous consequences for inequality rather than self-perceptions, though. This is what Figure 22 below shows. Apart from agents at the respective upper and lower boundaries, the approximately homogeneous segregation tendency across the income distribution manifests itself in roughly + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + --- + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + Figure 22: Plot of inequality perceptions against the income rank. Almost all individuals underestimate true inequality with a Gini of 0.5 in all cases of ρ > 0. For moderate to high homophily strenghts ρ between 4 and 14, there is little covariation of income rank and perceptions (except for the inflated perceptions at the upper and lower boundary). by them. For ρ ≥ 4, any differential behaviour is then barely visible in local inequality perceptions within Figure 22, in contrast to both stylised fact (iii) and our results for choice with absolute income differences.

f10b7bf4a0c04e9196c931314aa73d3e3c8081a1

Patterns and Associated Factors of Caesarean Delivery Intention among Expectant Mothers in China: Implications from the Implementation of China’s New National Two-Child Policy

Objective: This study explores the basic demographic characteristics of expectant mothers in the context of their intentions regarding mode of delivery, in particular, the preference for caesarean delivery, and analyzes the social and psychological factors that influence delivery preference. Method: A cross-sectional survey of pregnant women was conducted during June to August in 2015. This study adopted a stratified sampling method, and 16 representative hospitals in five provinces of China were included. Results: 1755 and 590 of expectant mothers in their first and second pregnancies, respectively, were enrolled in this study. 354 (15.10%) intended to deliver by caesarean section and 585 (24.95%) participants were uncertain prior to delivery. 156 (8.89%) of expectant mothers in their first pregnancy and 198 (33.56%) expectant mothers in their second pregnancy intended to deliver by caesarean section. Ordinal logistic regression analysis found that nationality, parity, trimester of pregnancy, and advanced maternal age were factors associated with intention to deliver by caesarean (ordered logistic regression/three-level caesarean delivery intention criterion; odds ratios p < 0.05). Conclusions: 8.89% of first pregnancy expectant mothers and 33.56% of second pregnancy expectant mothers intended to deliver by caesarean section. Any intervention program to reduce the rate of Caesarean delivery should focus on the Han population, older pregnant women, and expectant mothers in their second pregnancy, at an early gestation.

Introduction In 1985, the World Health Organization declared in Fortaleza, Brazil, that "There is no justification for any region to have a caesarean section rate higher than 10%-15%" [1]. The statement was based on the good maternal and perinatal care outcomes of the Nordic countries. In middle/low-income countries, the optimal caesarean section (CS) rate is influenced by preferences regarding delivery, available medical services, family income, and the health care professionals' qualifications, as well as parents' education level. Nevertheless, CS rates show a significantly increasing trend worldwide [2]. The most likely reasons include: reluctance to undergo a vaginal delivery (particularly amongst pregnant women with previous CS experiences), little improvement in facilities for vaginal delivery, and increased antenatal indications for CS consequent on improved equipment and technology (such as 3D ultrasound, fetal monitoring, fetal mirror, etc.) [3]. There is a growing trend in China for CS, from 2.0% (14/701) in 1978-1985 to 36.6% (813/2224) during 2006-2010 [4]. A 2011 survey conducted in multiple regions of mainland China found that the CS rate was 54.5%; 24.6% of these were performed in the absence of any medical indication [5]. Reports from 2014 show CS rates in China of 54.90% [6], and 58.5% [7]. In the United States, CS has become the most common surgical procedure; the CS rate increased from 20.6% in 1997 to 31.5% in 2009 [8]. In recent years, the CS rate in Europe was 19%-33% [9], in South America rates were 30%-50% [10], and there is a rising tendency in Africa and other regions [11]. Molina et al., further investigated the CS rate for all WHO Member States; 45 countries had a CS rate ď7.2%, 48 countries 7.2%-19.1%, 48 countries 19.1%-27.3%, and 53 countries >27.3% [3]. The increasing trend was illustrated by a significant average annual increase in primary (4.3%) and repeat (4.8%) CS rates from 1998 to 2008 in Australia [12]. Socio-economic factors have contributed to the increase in "unnecessary" CSs in China [7]. A large retrospective survey in China identified factors which led to CS delivery; these were not only personal (education, vocation, age of childbearing, residence) but also medical (for example hypertension, above average fetal weight, fetal malposition) [4]. The increased preference for CS is likely to be influenced by multiple additional factors, such as the financial status, underlying diseases, level of education, family/social environment, reproductive knowledge, media reports, feedback from social circles and medical staff, as well as the previous delivery experience [13]. Despite the greater number of complications and risks of CS as compared to vaginal delivery, women still tend to choose CS. Litorp's investigation concluded that these women focused on a perceived benefit for their child, and overlooked the risk to themselves of going through a CS [14]. In respect of the women's preference, health workers should also monitor the influence of different health care models [9]. In certain high-risk pregnancies, CS delivery is an effective measure to reduce maternal and prenatal mortality, however, high CS rates do not relate to any decline in maternal and neonatal mortality rates. Moreover, CS conveys risks of complications that are greater than those of vaginal delivery [15], (such as infant and maternal mortality, severe maternal complications (post-partum bleeding, organ damage, infection, pain, etc.). CS also triggers other socio-economic challenges, such as the excessive costs for infant intensive care, as well as for other health care resources. In Europe, it has been estimated that if appropriate decisions regarding mode of delivery were applied to those delivering after a previous CS, not only would 160,000 unnecessary caesarean sections be avoided annually, but about €150 million of additional expenses would be saved [16]. The increase in CS delivery over time has been maintained. As for the primipara, the increase may be related to differences in clinical decision making or maternal request. However, other reasons, such as anxiety, various pregnancy complications, a painful previous childbirth experience, as well as the neonatal morbidities caused by the vaginal delivery, may influence a choice to opt for CS [17]. On 29 October 2015, the Chinese government announced their new policy: an amendment to its 1978 single-child family policy would fully allow couples to have two children. Some expect that this may trigger the next baby boom in the mainland China. This study explores the socioeconomic status of the different populations on their preference for the caesarean sections. In particular, we compared the delivery preferences of women in their first and second pregnancies and analyze socioeconomic factors that impact on delivery preference. --- Participants and Methods --- Ethical Approval All subjects gave their informed consent for inclusion before they participated in the study. The study protocol was approved by the Ethics Committee of Chongqing Medical University (record number 2015008). --- Research Method A cross-sectional analysis of expectant mothers from June to August in 2015 from 16 hospitals in five regions of Mainland China was undertaken. The sample consisted of pregnant women in five regions, namely, Chongqing, Chengdu, Zunyi, Liaocheng, and Tianjin, China. Chongqing, Chengdu, and Zunyi are in south China, Liaocheng and Tianjin are in north China. Face-to-face interviews using a survey questionnaire were conducted by the investigators who were specifically trained, medical students. The participants were categorized into two groups based on delivery times: Expectant Mothers in their First Pregnancy and Expectant Mothers in their Second Pregnancy. --- Population and Sample Participants were those pregnant women who want to get examined in obstetrics clinic. Data were stratified sampling selected pregnant women (both expectant mother of first and second pregnancy). In 2455 target interviewers, 55 participants declined to answer any questions, and the preliminary response rate was thus 97.76% (2400/2455). Among 2400 respondents, the final analysis sample included the 2345 persons who answered all questions. --- Face Validation and Content Validity The questionnaires were established by a panel of nine experts (three nutrition experts, two target population experts, two epidemiology experts and two health education experts). --- Sampling Framework This study was conducted in obstetrics clinic in selected hospitals. The following guidelines were implemented during the Hospitals survey. To reduce admission rate bias, hospital level was divided into Level 3A hospital, Level 2A hospitals, and Level 2B hospitals and below. According to the hospital level, we randomly sixteen hospitals in five regions of Mainland China were included in this study. --- Survey Administration --- Participants-Pregnant Women Feeding Service Social Media-QQ Group To better understand the needs of pregnant women and give better service for pregnant women, we established a social media communication group (QQ group). This QQ group conveniently provided research personnel to answer questions raised by pregnant women and facilitate communication between pregnant women and researchers. Our research group's members answered pregnant women's questions in a timely manner. --- Network Communication among Team Members Network communication: we used a social media mobile app QQ (Tencent Group, Shenzhen, China) to strengthen communication among team members. We promptly collated and shared problems encountered during the investigation through the group, in order to exchange knowledge and experience. The network was used to share relevant data, and to provide online training for investigators. --- Investigators Team members were from different grades, including undergraduate and graduate students, academics from Chongqing Medical University, Chengdu University of Traditional Chinese Medicine, Jackson State University and the University of Adelaide, and hospital obstetricians. All investigators underwent standardized training and were familiar with the objectives and methodology. --- Process of Development of Questionnaire We designed and modified the questionnaire as follows. First, after the first draft of the questionnaire, students met to modify the questionnaire. Second, teachers from School of Public Health and Management, Chongqing Medical University modified the questionnaire. Third, Invited obstetricians revised the questionnaire. Fourth, foreign experts modified the questionnaire. --- Pilot Study A total of 24 individuals participated in a pilot test in June 2015. The questionnaire was subsequently modified, according to results of the pilot. Also, it became apparent that investigators required further training; this was provided. --- Work Manual of Investigators The manual was divided into two parts. The first part contained the overall plan; it included the background, purpose, technical route, research method, data processing, etc. It was written in the relatively simple language, to ensure that it was understood by all of the students. The second part contained details regarding organization and implementation, including the preparation of our materials, application of various funds, progress in other work, and our modification consequent on the pilot test. In this section, some of the important aspects of the investigation were stressed, to avoid mistakes during the investigation, and also to add relevant literature concerning the interview skills. We delivered the work manual to each member of the research group. --- Questionnaire The questionnaire was customized for the target population, with modifications based on the pilot study. The final draft of the questionnaire was agreed after several discussions with experts after review of the pilot investigation. We modified the questionnaire, especially the presentation of questions and improved the answer options of the questions. The revised questionnaire had an acceptable level of face and content validity and readability. Demographic data included age, residence (Urban/Rural), per capita income of the family (<¥4500/¥4500 and ¥9000/>¥9000), occupation (Rural migrant workers/Urban and rural unemployed, unemployed/Industrial workers of Non-agricultural registered permanent residence/Individual business/Business services staff/Civil servants/Senior manager and Middle-level manager in large and medium enterprise/Private entrepreneur/Professionals/Clerks/Students/Others), advanced age for pregnancy(aged 34 years old and above) (YES/NO), chronic diseases (YES/NO), hospital level (Level 3A hospital/Level 2A hospitals/Level 2B hospitals and below), nationality (Han nationality/Minority), only child (Yes/No), husband is the only child (Yes/No), marital status (Unmarried/Marriage/Remarried/Divorced/ Widowed). Pregnancy was divided into three trimesters. Education level was categorized as ďprimary school, junior middle school (basic education), ěa senior high school (including vocational/technical secondary school and junior college), (secondary education) and ěsenior college and university (higher education). CS delivery intention among pregnant women were divided into 3 categories "Normal delivery intention", "Unsure prior to delivery", and "Caesarean delivery intention". --- Data Analysis The data was carefully reviewed prior to entry into the database using EPI Data 3.1 software (The EpiData Association, Odense, Denmark). Data analysis was performed using statistical software (SAS version 9.1; SAS Institute, Cary, NC, USA) after careful data sorting and cleaning. The characteristics of the participants were summarized using either means and standard deviations or frequencies and percentages, and were presented using descriptive analysis (means, standard deviations, and percentages). Chi-square tests were employed for comparisons when appropriate. Ordinal logistic regression analysis [18] was conducted to examine the risk factors of CS delivery intention among expectant mothers. --- Results --- Demographic Characteristics of Expectant Mothers In total 1755 and 590 expectant mothers in their first and second pregnancies were enrolled. 354 (15.1%) intended to deliver by CS and 585 (25.0%) participants were unsure prior to delivery. Furthermore, 156 (8.9%) expectant mothers in their first pregnancy and 198 (33.6%) expectant mothers in their second pregnancy intended to deliver by CS. 346 (15.4%) Han nationality and 8 (8.6%) minority nationality intended to deliver by CS. 42 (14.3%) in the first trimester of pregnancy and 97 (13.8%) in the second trimester of pregnancy, and 215 (15.1%) in the third trimester of pregnancy intended to deliver by CS. 263 (12.5%) participants who were advanced in age for pregnancy, and 91 (37.5%) participants who were not, intended to deliver by CS (see Table 1). Notes: Education level was categorized as ďprimary school, junior middle school (basic education), ěa senior high school (including vocational/technical secondary school and junior college), (secondary education) and ěsenior college and university (higher education). --- Ordered Multivariate Logistic Regression for Caesarean Delivery Intention To further investigate the factors that affect the characteristics of women with particular delivery preferences, we chose the following parameters: hospital level, nationality, only child, husband is the only child, marital status, education level, residence, per capita income of the family, career, trimester of pregnancy, advanced maternal age in pregnancy, parity. CS delivery intention (Normal delivery/Not sure/Caesarean delivery) was a dependent variable; we then conducted ordinal logistic regression analysis. In the ordinal logistic regression analysis model, partial regression coefficient (ß) = Estimate. OR = e ß . Compared with Han nationality, minority nationalities were less likely to have CS delivery intention (95% CI (´0.9588, ´0.0398), p = 0.0374). Compared with Expectant Mothers in their First Pregnancy, Expectant Mothers in their Second Pregnancy were more likely to have CS delivery intention (95% CI (0.6467, 1.0584), p < 0.0001). Compared with women in early pregnancy, women in late pregnancy were less likely to have CS delivery intention (95% CI (´0.5215, ´0.0209), p = 0.0327). Women with advanced maternal age in pregnancy were more likely to have CS delivery intention (95% CI (0.4593, 1.0308), p < 0.0001) (see Table 2). --- Discussion In view of the increasing CS rate in mainland China and the rest of the world [2], especially among pregnant women without any medical indications for CS, we investigated the child delivery preference among Chinese pregnant women during the transition of China's one-child policy. Our study shows that the preference of the natural childbirth accounted for 59.8%, CS 15.09% and "not sure" 24.94%. Consistent with these findings, Liu et al. [19] conducted a similar study among Shanghai pregnant women over last six years and reported that more people preferred vaginal birth (61.2%) than CS (24.7%). However, our study indicated that the proportion of intended CS delivery among second-time mothers is much higher than that of the first timers. In the ordinal logistic regression analysis model, this study found that compared with expectant mothers in their first pregnancy, expectant mothers in their second pregnancy were more likely to have CS delivery intention. Pregnant women of advanced age were more likely to have CS delivery intention; they may have had more experiences and psychological pressures to undergo a vaginal delivery. Of course, women childbearing for the second time is generally older than women childbearing for the first time, with higher pregnancy risk as well. Advanced maternal age is associated with higher risks of miscarriage, premature birth, stillbirth and higher rates of gestational diabetes mellitus, gestational hypertension and preeclampsia-eclampsia [20,21]. Overweight and obese older pregnant women have a significantly high risk, particularly for stillbirth and preterm delivery [22]. Therefore, it is critically important to provide the appropriate prenatal care (disease detection and prevention) to women who are pregnant for the second time. Effort should also be put to improve the quality of the medical professionals and their continuing education, strengthening the obstetric management, and monitoring the CS criteria. In order to reduce the unnecessary adverse outcomes, effort should be increased to strengthen the monitoring and management of older pregnant women so that reasonable dietary guidance and weight monitoring [23] can be provided, as well as improving health care awareness of physical health and social and psychological wellbeing. The Chinese government implemented the one-child policy nearly 40 years ago, and the CS rate gradually increased. The two-child policy will increase birth rates; this study found that expectant mothers in their second pregnancy were more likely to choose CS delivery. Consequently, the CS delivery rate may further increase. This study provides more important implications for the control of CS deliveries after China's new universal two-child policy. An interesting phenomenon in the survey is that the preference for CS among ethnic Han women is higher than that of ethnic minorities. Possible reasons include special phenomena, such as a desire for children to be born on special days named "Auspicious day", even "Auspicious hours"and thus, choose CS delivery. Women's awareness of childbirth is also subject to cultural, social norms and expectations, as well as their local medical conditions and the medical, advice they receive [24,25]. Other studies also demonstrated the influence of religions and communities on the attitude to CS [14]. For example, Janevic et al. [26] surveyed the delivery preference of women from different races and birthplaces in New York; after adjusting for multiple risk factors, women's CS preference differed by race and birthplace. All ethnic groups except East Asian women were at an increased risk of CS delivery; the highest rates were among Hispanic Caribbean women and African American women. Janevic et al. suggested that some potential factors should be further explored, including hospital environment, provider's bias, and patient preference. Efforts to reduce CS rates should address these disparities. Henderson et al. investigated the quality of obstetrics services for minority groups in England and Wales. They found that compared with whites, minorities have poorer obstetric services, and they argued that these services should be improved [27]. Compared with women in early pregnancy, women at the late stage of pregnancy were less likely to have CS intention. This may be consequent on prenatal pathology (such as malposition, pregnancy-induced hypertension, gestational diabetes, fetal growth restriction, an oversized infant, twins, umbilical cord around the neck and other fetal anomalies) and psychological changes. As they get closer to their due date, pregnant women may be more likely to pay attention to the decision of delivery mode. Women under anxiety and psychological tension are particularly vulnerable to external influences; for example, inpatients could be affected by women who are in labour, as well as by information from the medical staff. A 2010 report is worthy of mentioning; this re-defined the concept of term infants from 39 to 40 weeks (+6 days) [28]. The report pointed out that infants born less than 39 weeks may not perform optimally in the long run in reading and maths. It was believed that week 37-39 of the pregnancy is a critical development period of fetal brains [28]. Therefore, in the hospital, unless there is a medical exception, it is important for medical staff to nurture the correct delivery attitude, and organize periodic training, and to foster patient's confidence and a positive attitude. Although CS could effectively reduce the high-risk pregnancy complications and neonatal mortality, unnecessary CS should still be avoided for low-risk deliveries. Of course, patient's needs and the precondition of mother-baby safety must be taken into account in decision making. To decrease the C-section rate, we should first decrease the rate of CS through maternal request. Appropriate policies and guidelines should be developed to accomplish this goal [6]. CS delivery rates positively correlate with infant mortality rates among high-income industrialized countries. One cause of this phenomenon is iatrogenic preterm delivery [29]. Global health care professionals should put actions to strengthen the obstetric care and the accurate assessment of CS criteria [9], including providing of options of painless childbirth and education and psychological interventions, increasing of quality of natural delivery services, proper culture and prohibiting of doctors from professional opinions and profit [30]. This study has certain limitations. First, cross-sectional survey data reduced the ability to make direct causal inferences, to explore whether unmeasured factors may better explain the observed relationships we observed, and to determine the direction of causality. Second, the face-to-face survey administration design may convey information bias. Respondents may not have answered the questions truthfully. That said, all questions in the survey were reviewed by a panel of researchers and participants in the pilot study, and thus, the questionnaire was less likely to include items that could be perceived as sensitive by the study participants. During the face-to-face interview, investigators asked questions one by one to assure that respondents would answer seriously. Third, the authors have not actually asked the about the reasons for participants' choice of delivery, this study mainly focuses on the characteristics of the participants who chose caesarean delivery. Fourth, our study was not exactly nationally representative. The sample consisted of pregnant women in five regions, namely, Chongqing, Chengdu, Zunyi, Liaocheng, and Tianjin, China. Chongqing, Chengdu, and Zunyi are in south China, Liaocheng and Tianjin are in north China. --- Conclusions Estimated 8.9% of expectant mothers in their first pregnancies and 33.6% of mothers in their second pregnancies intended to deliver by CS. This study provides more important implications for the control of CS deliveries after China's new universal two-child policy. Any intervention programs to reduce the rate of CS should focus on the Han minority, pregnant women of advanced age, women in early pregnancy and, expectant mothers in their second pregnancy. --- Author Contributions: Lianlian Wang participated in the design of the study, provided interpretation of study results and drafted the manuscript. Xianglong Xu participated in the design of the study, performed the data analysis, provided interpretation of study results and drafted the manuscript. Yong Zhao participated in the design of the study and helped draft the manuscript. Philip Baker, Chao Tong, Lei Zhang, and Hongbo Qi, contributed to the interpretation of study results and helped draft the manuscript. All authors read and approved the final manuscript. --- Conflicts of Interest: The authors declare no conflict of interest.

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THE PERCEPTION OF SOCIETY TOWARDS DIVORCE

This study took place in Bantul district since there were many divorce cases in this area, particularly more cases of divorce by litigation compared to those by thalaq every year. Moreover, it had the highest cases in the Special Region of Yogyakarta. According to data from the office of Ministry of Religious Affairs in Bantul, in 2013 the number of divorce by thalaq was recorded 194 cases, while the number of divorce by litigation was 456 cases. In 2014 the number of divorce by thalaq was 186 cases while the number of divorce by litigation was 553 cases. In 2015, there were 55 cases of divorce by thalaq and 198 cases of divorce by litigation. This study aimed at finding out the factors contributing to the high number in cases of divorce by litigation and exploring the perceptions of societies in Bantul towards divorce. This study used qualitative methods, so then data was collected from documents from Bantul Religious Court and Bantul Ministry of Religion, and interviews with women filling for divorce, religious leaders, and public figures. The findings of the study indicated that the factors causing the high number in divorce by litigation were economic factors, level of education, consumptive lifestyles, and changes in societies' perceptions towards divorce. In addition, societies of Bantul regency believed that divorce was a common issue and considered as the best solution in solving family problems.

The resilience of family seems to be getting more challenges. The continuous development of technological advances and an era of competition that is getting tougher make it increasingly difficult for family members to interact well and warmly. Thus, to build "Home Sweet Home" will be more difficult. This is triggered by the widespread associations that violate norms and have no shame to show off their household problems. Both husbands and wives used their household problems as topics for conversation that become "pride". Therefore, they feel that it is normal and consider it as a common issue. Furthermore, there is an affair which can trigger quarrels and disharmony in the household. Finally, it ends in divorce. 1 Every couple want the integrity in building a household. However, the reality shows that the divorce rate is high. The existence of social pressure in society that divorce is neither a prohibition nor disgrace in society, divorce has become a common issue. 2 Divorce is the breaking up of a legal marriage before a court judge based on conditions stipulated by the law. As published in Article 113 of the Compilation of Islamic Law, that one of the reasons for breaking up of a marriage is divorce. In accordance with the law, divorce cannot just happen, but there must be reasons justified by the law to divorce. That is very basic, especially for courts which have the authority to decide whether a divorce is appropriate or not feasible to be implemented, including all the consequences that occur as a result of divorce. Therefore, it is necessary to understand the soul of the divorce regulation and the causes and consequences that may arise after the husband and wife have terminated their marriage. 3 Another definition of divorce is separation between husband and wife as a result of their failure to carry out their respective role bonds. In this case, divorce is seen as the result of an unstable marriage in which the husband and wife then they live separately and are legally recognized by the applicable law. In other words, divorce is a break in the family because both partners decide to leave each other so that they stop doing their obligations as husband and wife. However, the occurrence of divorce for children is a "sign of death" of the integrity of the family, it feels like half of the "self" of the child has been lost, life will not be the same again after their parents' divorce and they have to accept the sadness and feelings of deep loss. 4 The divorce rate in Indonesia is getting more worrisome from time to time. In 2013, the BKKBN asserted that the divorce rate in Indonesia was already the highest in the Asia Pacific region. In fact, in the following years the number of divorces continued to be high. Data from the Ministry of Religion submitted by the Head of the Kepenghuluan Sub-Directorate which was published in the national newspaper are as follows: Responding to data, a sample of last two years was taken, namely in 2012 and 2013, then the average divorce rate was taken every year as many as 350,000 cases, it indicated that in a day there were 950 cases or 40 cases of divorce every hour. Then, according to the Deputy Minister of Religion, dealing with the number of divorces, 70% of divorce lawsuits were filed by the wives, it implied that from the 40 divorce cases, 28 cases were proposed by the wife's side. The female-initiated divorce is called divorce by litigation, while male-initiated divorce is called divorce by thalaq or male repudiation. Then, cases of divorce by litigation occurred in Bantul Regency, Yogyakarta were higher than divorce by thalaq. The interesting thing from these data is that the majority of divorce cases were in the urban buffer districts. Meanwhile, based on the district area, in 2013 there were 55 cases of divorce by litigation occurred in Banguntapan district, 70 cases in Kasihan district, and 39 cases in Sewon district. Then in 2014 cases of wife-initiated divorce in Banguntapan district were recorded 79 cases, in Kasihan district 53 cases, in Sewon district 58 cases. In 2015, in Banguntapan district there were 21 cases of divorce by litigation, 49 cases in Kasihan district, and 19 cases in Sewon district. Meanwhile, in other districts the number was below the 3 urban buffer districts. There are several reasons of divorce. According to the Islamic Law Compilation in the article 116 (Zulkifli, 2018), the reasons of divorce allowed are: a. One of the parties commits adultery, drunkenness, gambling, drinking, and others which is difficult to be cured. b. One of the parties leaves the other party for 2 years without the permission of the other party and without valid reasons or other matters beyond the capabilities. c. Either party gets 5-year imprisonment or a harsher sentence after the marriage. d. One party conducts cruelty or serious maltreatment that endangers the other party. e. One of the parties gets a physical disability or disease that is difficult to cure which causes the person cannot carry out the obligations as husband or wife. f. There is a dispute or quarrel between husband and wife that cannot possibly be reconciled or reconciled again. g. Husband prohibits taklik divorce. h. Religious conversion or apostasy which causes disharmony in the household. Perception towards something can influence one to make a decision including decision to file a divorce. Therefore, perception of societies in Bantul regency towards divorce can also influence them in making decision in divorce. Perception (from Latin perception, percipio) is the act of compiling, recognizing and interpreting sensory information to provide an overview and understanding about the environment. Perception covers all signals in the nervous system that result from physical of chemical stimulation of the sense organs. For example, vision, in which the light is hitting the retina in the eye, smells use odor or aroma molecules, and hearing which involves sound waves. Perception is not a passive acceptance of cues, but is formed by leaning, memory, hope and attention. Perception depends on the complex functioning of the nervous system, but it appears to be non-existent because it occurs outside of consciousness. 7 The terms of perception is often referred to as a view, description, or assumption. Because perception relates to the response about one thing or object. Perception also has several definitions, including: a. According to Bimo Walgito: perception is a process that is preceded by sensing, which is a process that takes the form of receiving a stimulus by a person through the senses or also called the sensory process. b. According to Slameto: perception is a process that involves the entry of messages or information into the human brain. c. According to Purwo Darminto: perception is a direct response from an absorption or the process of someone who knows several things through sensing. d. In the dictionary of psychology, perception is defined as a process of observing someone's environment by using their own senses so that they become aware of everything in their environment. 8 Perception has a subjective character, due to it depends on the abilities and circumstances of each individual so that it will be interpreted differently by one individual to another. Thus perception is a process of individual treatment, namely giving responses, meaning, description or interpreting what is seen, heard, felt by the senses in the form of attitudes, opinions, behavior, or referred to as individual behavior. Selective perception is interpreting selectively what someone sees based on the individual's interest, background, experiences and attitudes. Factors that affect perception are divided into internal factors and external factors. Internal factors contained in the individual include several things, namely: a. Physiological: the information that come in through the senses, then the information obtained will influence and complement efforts to give meaning to surrounding environment. The capacity of the sense to perceive each person in different so that interpretations of the environment can also be different. b. Attention: namely individuals need a certain amount of energy spent to show or focus on the physical form and mental facilities that exist in an object. Energy of each person is different and this will affect the perception on the object. c. Interest: the perception of an object varies depending on how much energy or perceptual vigilance is moved to perceive it. Perceptual vigilance is a person's tendency to pay attention to certain types of stimuli or can be mentioned as the interest. d. Undirectional needs: this factor can be known from how strong an individual is to look for objects or messages that can provide answers in accordance with itself. e. Experience and memory: experience can be said that it depends on memory, it means that to what extent person can remember past events in order to know a stimulus in a broad sense. f. Mood: an emotional state affects the behavior of person, this mood shows how feelings at a time can affect a person in receiving, reacting and remembering.9 External factors that influence perception are characteristics of the environment and the objects involved in it. These elements can change the perspective of the individual around the world and influence how someone feels or receives it. Meanwhile, external factors that affect perception, including: a. Size: the bigger of the size, it is easier to understand, so that it is more effective to form perceptions. b. Color: contrasting colors, i.e. objects that have sharper light are easier to understand (to be perceived) than objects that have less sharp light (slightly). c. Stimulus uniqueness and contrast: external stimuli whose appearance against the background and surroundings completely outside the expectations of other individuals will attract a lot of attention. d. Motion or movement: individuals will pay a lot of attention to moving objects within sight rather than at stationary object. Based on the explanation above, the writer carried out the research to find out the factors contributing to the high number in cases of divorce by litigation and exploring the perceptions of societies in Bantul towards divorce. This research was expected to give recommendation for the problem of the high number of divorces particularly those by litigation. --- B. RESEARCH METHODS This was a qualitative research conducted in Bantul Regency Yogyakarta. Data collected was data from 2013 to 2015 in Banguntapan District, Kasihan District, and Sewon District. Data was collected through documentations from Bantul Religious Court and Bantul Ministry of Religion, and interviews with women filling for divorce, religious leaders, and public figures. --- C. DISCUSSION --- Factors Contributing to Divorce by Litigation and Perception of Societies in Bantul towards Divorce Bantul Regency is located in the south of Yogyakarta Special Region Province, which borders to the north with Yogyakarta City and Sleman Regency, south of the Indonesian Ocean, east to Gunung Kidul Regency and west to Kulon Progo Regency. The total population in Bantul Regency is 919,440 people or 299,722 families, with a population density of 2,012,193 people per kilometers. The population is spread across 17 districts, 75 villages and 933 hamlets, with an area of 506.86 km. From the 17 districts in Bantul area, Banguntapan District has the highest population density, namely, 4,218 people per kilometers, it is followed by Sewon District that has of 3,835 people per kilometers, then Kasihan District. The level of population density in the three districts is due to the large number of immigrants who buy land for residential houses or occupy housing that have emerged in the three districts because the location of these three districts are closest to the city center. Thus, Banguntapan District, Sewon District, and Kasihan District are called Urban Buffer District. The three districts that support the city should have social life dynamics that are different from the other 14 districts in Bantul Regency, in various fields that bring positive and negative consequences. Social dynamics that occur in society are in the form of changes in social values, prevailing norms in society, patterns of individual and organizational behavior, the composition of social institutions, strata or classes in the power and authority. It can be asserted that there have been social changes which include changes in social organization, social status, social institutions and structures. The findings of the study in three districts in Bantul regency indicated that the factors causing the high number in divorce by litigation were economic factors, level of education, consumptive lifestyles, and changes in societies' perceptions towards divorce. Head of the Office of the Ministry of Religious Affairs in Bantul Regency argued that the high number in cases of wife-initiated divorce was dominated by economic factors. Economic problems often result in disharmony between married couples, then the wife proposes divorce. Besides, the factor of the maturity of the husband and wife is still lacking. Including the lifestyle in the era of freedom and it eases for married couples to choose divorce when their household life is no longer getting along. 10 The spread of divorce cases from various factors will directly damage the younger generation, such as children of divorced families. Because they live in an unpleasant environment, full of contention, lack of attention and protection. As in Kartini's perspective, there are several causes of juvenile delinquency, one of which is the theory of psychogenesis.11 This theory emphasizes the causes of delinquent behavior or delinquency from a psychological aspect. Some of the factors that come from the theory of psychogenesis are broken home or divorces parents who started with a cold war in the family. 12 In the past, the public perception of divorce was that divorce was taboo and shameful. Especially if the divorce occurs at the wish of the wife. A woman who asks for a divorce from her husband is viewed negatively by society. So that divorce is considered something taboo and it is embarrassing in the society. As a majority of people who embrace Islam, the underlying view of divorce is through an understanding of the teaching of Islam itself. Divorce is an act that is hated by God. However, if there is no other alternatives, while divorce is a way out in a marriage that can no longer be maintained. 13 Factors that affect divorce are there is no existence of mitsaqan ghalidzan or the absence of strong marital ties due to the influence of third party intervene and the lack of responsibility of the husband. 14 Divorce is also shortcut in solving problems that exist in family. According to Ponijah, her husband does not ever think about the needs of the family. If Ponijah asks for money for family needs, for her child's school fees, her husband just promises and never fulfills it. 15 Apart from being triggered by family problems due to the economy and the lack of responsibility of the husband. Divorce is also caused by an excessive lifestyle. This is due to the influence of newcomers from the city, the majority of which have better economic stability than the original population. So that it affects the thoughts, behavior, attitudes and even appearance of the local person who wants to imitate the newcomers. 16 This lifestyle also affects the socialization of teenagers. In accordance with the current development, there are many cases of pregnancy before marriage. This seems to be a natural issue due to society's perceptions have begun to change and the decline in ethical values. 17 The lack of the role of parents as role models for their children and the ease of means of transportation and access to social media encourages the society to do many activities, both positive and negative. 18 Based on several interviews with various sources of information and data that have been collected, it can be concluded that there is an increase in economic independence and knowledge and social status of women, in this case the wife as a factor in the increase in cases of female-initiated divorce. The educational opportunities for women that are increasingly open are national assets that need to be optimized for its potential. However, on the other hand, the advancement of women's thinking, it gives opportunities for women's independence in various sectors, such as the economic, social, cultural and legal political sectors. By becoming more independent, women are more confident and better prepared to face problems including the decisions to sue for divorce. Responding to this conditions, it is not surprising that the number of female-initiated divorces is always higher than male-initiated divorce. Although the disharmony of family begins with the husband's irresponsible behavior, and as a source of commotion in the household, the husband does not take the act of divorce. While the wife and children feel depressed and suffer due to the husband's behavior, with all her courage, the wife proposes the decision to initiate divorce for maintaining the peace of the household and children. In addition, societies of Bantul regency believed that divorce was a common issue and considered as the best solution in solving family problems. Based on the research findings, that perceptions of society toward divorce were highly influenced by: 1. The parenting styles of parents and or other adults for the children and or their students have a very big influence on the development of mental attitudes later when the children or students have been adults. 2. The atmosphere in the house and the family that is not conducive, the habit of the family is looking for comfort, pleasure, peace outside the home. So that the function of home and family does not need to maintain the comfort and calmness. 3. Divorce is shortcut to break the chain of problems that are entwined in a household. With a divorce: as if" the problem will be resolved. Therefore, when the cracks in the household start to appear and have been going on for a long time and there is no solution that benefits the wife (especially divorce is the last way to be undertaken). 4. The status of a widow or widower is no longer taboo and shameful, but society can accept openly and respect the status decision. 5. The crisis of role model, good advice is easier to be said by anyone, anywhere and anytime. However, the good advice does not give the maximum effect, because people pay more attention and believe in actions seen. Therefore, as role model figures, children look for figures outside the home according to their wishes. Thus, a lot of teenage children who admire artists, public figures who are not necessarily good and in accordance with their personalities and family conditions. 6. The crisis of spiritual, religion is limited to knowledge and it is not an act or personality, so religious value are not a shield of life but merely ceremonial. 7. Social media, various types of social media from Twitter, Facebook, blog, Instagram, path will make it easier for someone to communicate and get information. However, with his convenience, both adults and adolescent, both educated and mediocre, they are less selective and less wise in responding to the advantages of the facilities offered by this information technology. 8. The Era of Women's Independence, Educational opportunities and achievements that have been achieved by woman have encouraged woman to have higher and stronger position in various aspects. By having a high and strong position, women are very independent. The independence of women makes them to have the courage for expressing opinions and making the decisions, as well as when they are treated unfairly. --- D. CONCLUDING REMARKS The problems of unwise use of social media, early marriage, sexual violence, irresponsible parents, unspoken marriages, consumptive attitudes, and excessive pleasure must be prevented and prohibited. Thus, that the result of this study is expected to contribute thoughts and input to parents in order to provide correct knowledge and understanding of married life to children so that they can form a family that is sakinah mawaddah wa rahmah and having the proper perception towards divorce.

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The Present Situation and Improvement Countermeasures of Multi-subject Participation in Disaster Relief in Hebei Province

The prevention, reduction and relief of natural disasters is a worldwide problem. In recent years, with the vigorous promotion of the social governance system of "government-led, social coordination and public participation", Hebei Province has achieved phased results in the field of natural disaster relief by formulating relevant regulations and policy documents, actively guiding multiple social entities to participate in disaster relief in an all-round way, establishing disaster early warning mechanisms and giving play to the role of the market. But at the same time, there are some problems, such as unclear legal status, lack of interactive platforms and lack of professional skills of disaster relief participants. In view of the above problems, this paper puts forward some countermeasures to improve the rules and regulations for the participation of disaster relief subjects, improve the information communication mechanism among disaster relief subjects and enhance the professional level of disaster relief subjects.

Introduction With frequent and frequent natural disasters, China is one of the countries most severely affected by natural disasters. According to the data released by the Ministry of Emergency Management, in 2022, a total of 112 million people were affected by various natural disasters in China, 554 people were killed and missing due to disasters, 2.428 million people were urgently relocated, 120,71.6 thousand hectares of crops were affected, and direct economic losses amounted to 238.65 billion yuan [1]. How to deal with the impact of natural disasters and minimize the risk and loss is still an issue that governments at all levels need to pay attention to. However, due to the uncertainty, suddenness, potential severity and other characteristics of natural disasters, as well as other objective conditions, it is far from enough to rely on the power of the government to carry out disaster relief, and it also needs the joint participation of multiple subjects such as social organizations, the public and enterprises. Hebei Province is a province where natural disasters occur frequently. There are many kinds of natural disasters with high frequency and great harm. Flood, geological disaster, typhoon, drought, hail, low temperature freezing and snow disaster and other types of disasters have different degrees of occurrence. In the past ten years, the cumulative number of people affected by natural disasters in Hebei Province was 110 million, and the direct economic loss was nearly 162.48 billion yuan, posing a certain threat to the life and property safety of people in Hebei Province. So far, although the government of Hebei Province has made some progress in disaster relief, the disaster relief work is increasingly inseparable from the joint participation of the society. Based on this, this paper attempts to analyze the role and realization mechanism of multiple subjects in disaster relief by combining the current situation of multiple subjects participating in natural disaster relief in Hebei Province, explore the difficulties faced by multiple subjects participating in disaster relief, and put forward relevant optimization suggestions, so as to build a more scientific and effective multiple disaster relief mechanism. --- Literature Review About disaster relief, domestic and foreign scholars have done a lot of research on it. In the context of frequent natural and man-made disasters, disaster relief has been paid more and more attention by the government and scholars. In China, disaster relief mainly relies on the government, and social participation is less, but in recent years, multiple subjects such as social groups, enterprises, the public and the media have actively participated in disaster relief and played an important role. In this context, scholars have discussed the multi-subject participation in disaster relief from different angles, mainly in the following aspects. (1) Multiple subjects participate in the scientific research of disaster relief At present, the theoretical research on multi-subject participation in disaster relief in the academic circle mainly focuses on three aspects. The first is governance theory, represented by Rosenau [2] and Gerry Stoker [3]. Stocker believes that governance is an activity in which entities with a common goal participate, either government or civil society organizations. The concept of governance proposed by the United Nations Governance Committee in Our Global Partnership is widely used in academic circles, which emphasizes the diversification of the subjects managing public affairs, including not only the government, but also nongovernmental social organizations, enterprises and individuals [4]. In short, no matter which concept is adopted to explain the theory, it provides theoretical support for multi-subject participation in disaster relief. The second is the multi-subject theory. Multi-subject participation in social public affairs is a new governance mechanism and an inevitable requirement for building a harmonious society in the new era. This theory proposes that in the governance of social public affairs, in addition to the state or government organization, other social forces should also actively participate, such as market organizations, social organizations and the public. In terms of governance methods, it is not only to obey the orders of government organizations, but also to adopt consultation and other ways to break the pattern that the government is the only power center [5]. Allowing multiple subjects to participate in the framework of disaster relief is conducive to making up for the shortcomings caused by "government failure" and better safeguarding the interests of the broad masses of people. Finally, there is the theory of emergency management, which was first used in the military and national security fields. Emergency management refers to the process in which the government, in response to emergencies, analyzes the causes, processes and impacts of emergencies in order to minimize the harm, and effectively collects information from all parties to optimize decisionmaking [6]. In recent years, natural emergencies have become more and more frequent, and the pressure on the government to deal with such incidents is also increasing. However, in the practice process, due to various practical conditions, emergency management has been expanding from the government to multiple subjects such as the private sector and the third sector. Therefore, through the participation of multiple subjects, it is an effective way to form an effective emergency management mechanism. (2) Research on the necessity of multi-subject participation in disaster relief In the field of disaster relief, social organizations are not a simple supplement to the government, but an indispensable force in the process of cooperative emergency response, which can provide important assistance to government organizations in terms of resources, technology and other aspects (Kapuca, 2011) [7], and from the perspective of medical rescue based on examples. The role and importance of ngos and the private sector in disaster relief work were analyzed (Kimiko Yamashita, 2019) [8]. At the same time, some scholars believe that disaster relief is not only a matter for the government, but also requires the participation of ngos, enterprises and individuals as governance subjects (Nasution Bahrul Ilmi et al., 2022) [9]. It is necessary to build a cooperative model of linkage between the government and local governments. When ngos, enterprises and ordinary people are absorbed into the disaster relief system, such a whole-society coordinated disaster relief model is effective (Rosenzweig et al., 2021) [10]. In China, there is no lack of research on the necessity of multi-subject participation in disaster relief. For example, in the book On Disaster Relief, the author did a lot of research on the necessity of social organizations participating in disaster relief, and explained the necessity of social organizations participating in disaster relief from the two aspects of participation motivation and the relationship between social assistance and the government (Li Xiaojin, Li Qiang, 1996) [11]. Some scholars used figurative metaphors to illustrate the necessity of multisubject participation in disaster relief, comparing disaster relief to "a wall against the wind" and ngos to "cement for the wind wall" (Jia Xijin, 2005) [12]. In addition, multi-subject participation in disaster relief also plays an important role in providing service, supervising the government, timely detecting crises and providing countermeasures and suggestions (Zheng Anyun, Dai Yaling, Miao Danmin, 2008) [13]. It can be seen that disaster relief not only needs the power of the government, but also the participation and support of social forces (Zhang Yong, 2016) [14]. (3) Research on the advantages and difficulties of multi-subject participation in disaster relief In terms of advantages, foreign scholar Salamon (1981) believes that the advantage of social organizations is flexibility, which can provide different services according to different needs [15]. Yan Wenhu (2010), a Chinese scholar, analyzed the role of government organizations in disaster relief and believed that government organizations have advantages such as fast response speed, high rescue quality and wide social resources [16]. Zhang Yong and Liu Jun (2011) pointed out that ngos play an indispensable role in disaster relief due to their public welfare, flexibility and professionalism, and play a positive role in disaster relief combined with the overall governance of the government [14]. In terms of difficulties, foreign scholar Salamon (1981) put forward the voluntary failure theory, believing that social organizations have limitations such as insufficient charity resources and unprofessional charity work [15]. John Twigg and Diane Stenner (2011) also believe that social organizations have difficulties such as unreasonable organizational structure [17]. Chinese scholar He Xiao (2009) pointed out in his research that social organizations still have problems such as insufficient legitimacy of volunteers, poor organizational management, weak organizational influence and surplus volunteers when participating in disaster relief [18]. Based on the performance of social organizations in the Wenchuan earthquake, Meng Tian (2014) affirmed their advantages such as fast response and meticulous work in his research, and pointed out that social organizations still have problems such as legitimacy dilemma, participation dilemma, cooperation dilemma, resource dilemma and capability dilemma [19]. --- The Effectiveness of Multi-subject Participation in Disaster Relief (1) Government level Regarding disaster prevention and relief, the Hebei Provincial government has always put the interests of the broad masses of the people first. In recent years, in combination with the specific deployment and relevant requirements of the CPC Central Committee and The State Council on the reform of the disaster prevention, reduction and relief system under the new situation, Hebei Provincial Government has achieved certain results in disaster prevention and relief. In terms of policies and regulations, the Hebei Provincial government follows The State Council's "National General Emergency Plan for Public Emergencies". The Regulations on Natural Disaster Relief, the National Comprehensive Disaster Prevention and Mitigation Plan and other policies and regulations, It has successively promulgated the "Hebei Provincial People's Government General Emergency Plan for Public Emergencies", "Hebei Provincial Natural Disaster Relief Emergency Plan", "Hebei Provincial Comprehensive Disaster Prevention and Reduction Plan", "Hebei Provincial Natural Disaster Relief Measures", "Hebei Provincial Major Meteorological Disaster Emergency Plan", "Hebei Provincial Flood Control and Drought Relief Emergency Plan", "Hebei Provincial Flood Control and drought Prevention and Typhoon Emergency plan", and "Hebei Provincial geological emergencies Policies and normative documents such as the Disaster Emergency Plan not only clarify the responsibilities and division of labor of local governments at all levels in disaster relief and prevention, but also provide policy and regulatory guarantees for multi-subject participation in disaster relief, and promote the specific implementation of disaster prevention and reduction and relief work. It can be seen that the disaster relief of Hebei Provincial government has achieved certain results in the construction of policies and regulations. In terms of disaster relief expenditure, Hebei Province is one of the provinces with the most serious natural disasters due to its complex geological structure and frequent natural disasters such as flooding, drought, hail and cryogenic freezing. Therefore, the Hebei Provincial government has always attached importance to the investment in disaster relief. According to the existing data of the National Bureau of Statistics, the disaster relief expenditure of the Hebei provincial government in 2019 was 4.689 billion yuan, 5.293 billion yuan in 2020 and 5.892 billion yuan in 2021, which was generally higher than that of other provinces in the country, which undoubtedly provided a solid material guarantee for disaster relief work and ensured the effective and smooth progress of disaster relief work. In addition, the Hebei provincial government has also implemented agricultural insurance against natural disasters in some cities, and established a unified rural housing insurance system to further reduce the losses of vulnerable groups in natural disasters. In short, for disaster relief, the Hebei provincial government has achieved certain results in both superstructure and material basis. (2) The social dimension As mentioned above, due to the characteristics of public welfare, flexibility and professionalism, social organizations play an indispensable role in disaster relief, which can be combined with the coordination and integrity of the government to play a positive role in disaster relief. Of course, the participation of social organizations in disaster relief is also based on relevant laws and regulations. For example, Article 3 of the Charity Law stipulates that non-governmental organizations may voluntarily carry out disaster relief work by donating and providing services, and Article 8 of the Law of the People's Republic of China on Earthquake Prevention and Mitigation stipulates that the government should actively encourage and guide nongovernmental organizations and individual citizens to carry out earthquake mass detection and mass prevention activities. It is necessary to rely on the strength of multiple subjects such as social groups, volunteers, communities and enterprises to form an emergency management mechanism with overall command, quick response, complete functions, orderly coordination and efficient operation. At present, Hebei Province has a considerable number of professional organizations that can carry out disaster relief tasks. For example, the Hebei Red Cross Society, the Hebei Charity Federation, the Hebei Charity Fund Joint Foundation, the Hebei Love Rescue Team and the volunteer service federation of various cities. Among them, the most representative is the Hebei Red Cross Society, which has so far established 57 rescue teams in different categories such as medical, search and rescue, and public health, ranking third in the country. In addition, in recent years, some enterprises and volunteers in Hebei Province have also actively participated in disaster relief work, and achieved good results. Taking the Zhuozhou flood relief situation in Baoding as an example, various social groups, enterprises and individual citizens uphold the spirit of "one party in trouble, eight parties support" and actively respond to the government's call to participate in flood relief. Among them, many social organizations such as Hebei Photovoltaic New Energy Chamber of Commerce, Baoding Female Photographers Association, Baoding Electric Power Equipment Industry Association, Langfang Wenzhou Chamber of Commerce and Cangzhou Boai Life Volunteer Service Association actively carried out donation activities to timely transport necessary living and medical supplies for the disaster area. In addition, a total of 120 volunteer service teams and 18,000 volunteers from Handan, Zhangjiakou, Langfang, Cangzhou, Shijiazhuang, Xingtai and other places participated in Zhuozhou flood relief work. According to preliminary statistics, the Zhuozhou flood relief work, a total of 800 social organizations participated in the province, all units and individuals donated a total of about 105 million yuan, carried out more than 760 rescue tasks, rescued more than 20,000 trapped people. It can be seen that the participation of various social groups, enterprises and individuals not only reduces the pressure of the government in disaster relief, but also improves the efficiency of disaster relief work, which is exactly the effect of multi-subject participation. --- The Problems of Multi-subject Participation in Disaster Relief From the practice of multi-subject participation in natural disaster relief work in Hebei Province, although each subject has made great efforts in disaster relief, and the multiparticipation has also played an advantage in disaster relief, there are still some problems in practice. (1) The legal status of multiple participants is unclear Although the rules and regulations of the Hebei Provincial government on disaster relief are relatively perfect, mainly including Hebei Provincial Natural Disaster Relief Emergency Plan, Hebei Provincial Natural Disaster Relief Measures, Hebei Provincial People's Government General Emergency Plan for Public Emergencies, etc., there are few detailed regulations on multiple participants in disaster relief. In particular, there is a lack of institutionalized provisions on the coordination mechanism among the participants and the division of powers and responsibilities. The government is in the leading position in disaster relief, but the legal status of other participants is vague, which will discourage its enthusiasm in disaster relief. On the other hand, with the continuous expansion of the volunteer service team, some rescue teams organized by enterprises, individuals or social groups to rescue in the disaster area, due to the absence of relevant volunteer laws, there will be chaos in the disaster relief process, greatly reducing their rescue capabilities and collective centripetal force. (2) The information communication mechanism of multiple participants is not perfect Due to the high frequency of natural disasters in Hebei Province, which have brought different degrees of harm to society and citizens, it is necessary for multiple parties to participate in coping with the impact of natural disasters. However, since the division of labor and responsibility of multiple entities in disaster relief is not clear, it is difficult to achieve the effect of coordination and cooperation in disaster relief. Although there are many channels for the release of disaster warning information in Hebei Province, it is mainly released to the public through TV, Internet, mobile phone SMS, electronic display and other channels, which can enable social citizens and rescue organizations to prepare for disaster prevention and relief in advance. However, after the disaster occurred, there was a lack of information exchange and feedback platform, insufficient disclosure of disaster information, and information communication and sharing between multiple participants and between the government and multiple participants could not be realized, resulting in unclear task distribution among various participants, ineffective coordination of rescue forces, and inaccurate implementation of the "last mile" rescue. (3) The lack of professional knowledge and skills of multiple participants in disaster relief At present, the people's Liberation Army and the armed police forces under the leadership of governments at all levels are mainly responsible for natural disaster relief tasks. In recent years, non-governmental rescue teams have gradually joined the disaster relief team. However, due to the lack of special disaster relief training and professional knowledge learning, some rescue teams blindly carry out disaster relief tasks without understanding the situation of the disaster area, which not only fails to cooperate with the government's disaster relief operations, but also causes chaos at the disaster relief site. In addition, the public's own professional knowledge and skills of disaster relief are insufficient, and they are often in a passive state when facing natural disasters, resulting in poor self-rescue and mutual rescue ability of the public. At the same time, since citizens learn about the disaster information of natural disasters mainly through the early warning issued by the government before the disaster, they fail to pay timely attention to the spread of the disaster or the external relief situation, which will greatly affect the rationalization of the victims and hinder the orderly development of disaster relief work [20]. --- Strengthen the Multi-subject Participation in Disaster Relief Countermeasures (1) Improve the rules and regulations for multiple entities to participate in disaster relief On the one hand, it is necessary to constantly improve and improve the rules and regulations for multi-subject participation in disaster relief. Hebei Province can fully learn from the rules and regulations for multi-subject participation in social relief in other provinces and combine the relevant practical experience of the province, so as to clarify and strengthen the scope of power of social organizations, enterprises, volunteers and the public under the legal framework. Further clarify the scope of responsibilities of multiple entities. According to the characteristics of different participants, the rules and regulations with high feasibility and strong operability are formulated to provide a good institutional environment for multiple participants to participate in disaster relief and ensure the legitimacy and enthusiasm of multiple participants. On the other hand, the government should pay full attention to the legal status of social organizations, enterprises, volunteers and the public to participate in disaster relief, give sufficient financial support, and further improve the corresponding reward and incentive policies. At the same time, we should improve the two-way supervision mechanism, not only introspection but also mutual supervision. The government should accept the supervision of itself and multiple subjects, and multiple subjects should also accept the supervision of the government and themselves. Maximize the integration of human, material and financial resources of the whole society, achieve efficient cooperation of multiple subjects, and carry out rescue work in an orderly manner. (2) Improve the information coordination mechanism for multi-subject participation in disaster relief First of all, we need to smooth the channels of information communication. As the leading force of disaster relief, when natural disasters occur, the government will announce the early warning information of natural disasters to the society through official channels, so that other participants can timely understand the disaster level and the situation of the disaster area and formulate disaster relief plans. After the occurrence of natural disasters, the government can announce the disaster relief process, rescue and relief consultation, and material needs of victims to the public through the official website, broadcast, social platforms (Tiktok, wechat public account, Weibo) and other channels, so as to increase the participation of the public and multiple subjects. Secondly, build a multi-subject information sharing platform based on digital technology. Information sharing platform is a bridge connecting the government and multiple subjects, and it is particularly important to build an information sharing platform led by the government and participated by multiple subjects. At present, the Hebei Provincial government has its own egovernment platform, which can realize the exchange and cooperation between various government departments. On this basis, it can be combined with blockchain, big data, Internet of Things, artificial intelligence and other technologies [21] to build a multi-subject information sharing platform to realize the two-way flow of information and data interoperability in disaster relief, and ensure the timeliness, accuracy and authenticity of disaster information. (3) Improving the professional level of multi-subject participation in disaster relief Considering the characteristics of current disaster relief and the existing problems of multisubject participation, first, the government should fully encourage multi-subject participation in disaster relief, provide appropriate financial or expert support, regularly conduct disaster relief lectures, encourage the establishment of professional disaster relief teams, and encourage them to carry out timely and appropriate simulation exercises in peacetime. Strengthen the capacity building of relevant rescue workers, and improve the response ability and professionalism of disaster relief teams. Second, regular disaster relief exercises and training are organized for the people in cities and counties prone to natural disasters in Hebei Province, so as to improve their mutual and self-rescue ability and psychological quality in natural disasters, so that the people can truly apply what they have learned and cope with natural disasters calmly [22].

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What helps children eat well? A qualitative exploration of resilience among disadvantaged families.

It is well known that persons of low socioeconomic position consume generally a less healthy diet. Key determinants of unhealthy eating among disadvantaged individuals include aspects of the family and external environment. Much less is known about family and environmental determinants of healthy eating among social disadvantaged children. The aim of this study was to gain insight into the family and environmental factors underlying resilience to poor nutrition among children and their mothers living in disadvantaged neighbourhoods. Semi-structured interviews were conducted with 38 mother-child pairs (N 5 76) from disadvantaged neighbourhoods. Children were selected if they were a healthy weight, consumed adequate intakes of fruit and vegetables and were physically active. Two main themes emerged from the interviews: active strategies from parents to promote healthy eating and external barriers and supports to healthy eating. Mothers believed that exercising control over access to unhealthy food, providing education and encouragement for consumption of healthy food and enabling healthy food options aided their child to eat well. Children did not perceive food advertisements to be major influences on their eating preferences or behaviour. The results of the current study offer insight into potential avenues for nutrition promotion among disadvantaged children.

Introduction A large number of studies have demonstrated that poor nutrition is disproportionally experienced by those with socioeconomic disadvantage (e.g. low income, low educated). For instance, individuals of lower socioeconomic position (SEP) reportedly consume diets higher in fat, lower in micronutrient density and have lower intakes of fruit and vegetables than those of higher SEP [1][2][3][4]. In children, an inadequate diet is associated with higher body mass index (BMI) and disease, both in childhood and adulthood [5][6][7]. A key prerequisite to promoting good nutrition among low SEP children is to better understand the mechanisms underlying healthy eating behaviours among this group. Social ecological models suggest that aspects of the home or neighbourhood environment, as well as personal factors, are likely to predict health behaviours such as healthy eating [8,9]. It is well recognized that the family environment plays a key role in the development of eating behaviours and food consumption among children [10][11][12][13]. Parents are primary socialization agents who transmit messages to children about their eating [14]. Over the past decade, the association between parental feeding style and practices and children's eating behaviour has received increased empirical focus. For instance, adolescents who describe their parents as authoritative (strict yet involved and supportive) have been found to have healthier dietary behaviours than those who describe their parents as authoritarian (also strict yet uninvolved) [15,16]. Parenting practices that encompass both direct (e.g. verbal encouragement to eat specific foods) and indirect (e.g. modelling consumption of specific foods) communications have been found to influence children's eating [17]. For instance, prohibiting palatable foods and exerting excessive control over access to unhealthy foods has been found to increase taste preference and desirability for that food, leading to weight gain and poor eating habits [18]. In addition, implementing 'food rules', such as offering dessert as a reward for consumption of vegetables, have been found to increase the child's preference for the reward food [19][20][21]. Furthermore, a recent review of qualitative data on parental perceptions regarding healthy behaviours for preventing overweight in young children revealed that several parenting strategies such as lack of time, lack of motivation and decreased perception of responsibility for child weight management acted as barriers to behaviours for promoting healthy eating and preventing overweight [22]. In addition to parental feeding styles and practices, parents' own eating styles have also been show to influence children's eating behaviours. Parents' food preferences, the foods they consume and make available to their children and their restrained eating (e.g. dieting) influence children's eating behaviours, potentially as a result of social modelling and by the choice of foods made available to their children [14]. In addition to the family environment, many factors within the broader environment have also been found to encourage or inhibit healthy eating among children. For instance, healthy eating behaviours among children have been associated with good accessibility to quality healthy food options in their local neighbourhood and involvement in the growing process of fruits and vegetables (e.g. from their home vegetable garden) [23]. The media has also been consistently reported as exerting a negative influence on children's eating and weight status. For example, children exposed to food advertising of unhealthy foods have been found to show increased preference for promoted foods and higher consumption and purchasing requests to parents for advertised foods [24,25]. However, although the majority of food advertisements promote unhealthy foods [25], there is some evidence to suggest a relationship between advertisements promoting nutritious foods and positive attitudes and beliefs about these foods [26,27]. Friends and peers have also been found to influence children's food preferences and eating behaviour. For instance, a recent qualitative study highlighted parental reports that peer consumption of certain foods (i.e. from their school lunchboxes) encouraged preferences for obtaining and consuming these foods [23]. While there is good evidence for an association between various family and environmental influences on children's eating behaviours, the majority of studies have focussed on parent report measures only and on child unhealthy BMI or risk of overweight/obesity as the main outcome. Rather than focussing on obesity-inducing behaviours, it may be fruitful to examine 'resilient' children; socioeconomically disadvantaged families with children who manage to eat well, despite increased risk of poor nutrition. To our knowledge, no study has simultaneously assessed parent and child perceptions of barriers and supports to healthy eating exclusively among a sample of low SEP children of normal body weight and with a diet including aspects of good nutrition. Enhancing our understanding of supports for healthy eating and methods employed to overcome unhealthy eating among disadvantaged children who eat adequate intakes of fruit and vegetables may inform nutrition interventions and obesity prevention among this group. The current study was designed to gain a better understanding of the barriers and supports assisting children to eat well. Specifically, we aimed to gain indepth insights into the family and environmental factors underlying resilience to poor nutrition from children and their mothers living in disadvantaged neighbourhoods. --- What helps children eat well? A qualitative exploration --- Methods --- Participants The participants were 38 mother-child pairs. A summary of the sociodemographic characteristics for the sample is provided in Table I. Briefly, the mean age of mothers and children was 38 and 9 years, respectively, and the majority of the sample (79%) resided in rural regions of Victoria, Australia. Participants were drawn from a larger study of 4349 women who participated in the Resilience for Eating and Physical Activity Despite Inequality (READI) study, a longitudinal cohort study examining resilience to obesity among socially and economically disadvantaged women and children residing in rural and urban areas of Victoria, Australia [28][29][30]. Disadvantage was defined using area-level disadvantage, which has been shown to have associations with poorer health outcomes, independent of individual markers of disadvantage [31]. Women in the READI study were randomly selected from neighbourhoods ranked in the lowest Victorian tertile of relative disadvantage, an index that considers area-level income, education and employment [32]. For the READI study, all women completed a baseline survey that assessed individual, social and environmental factors potentially associated with physical activity, diet and weight. From the READI baseline cohort, women with young children (n = 1680) were invited to complete a survey about the health and lifestyle of their child (n = 685, response rate = 59%). For the current study, participants were selected using purposive criterion sampling. From the cohort of women who had completed only the baseline survey and a survey for their child (n = 685), 67 children aged 8-12 years were identified as resilient. For the current study, resilience was defined as: healthy weight range (using mother reported height and weight to calculate BMI for age percentiles where children rated between the 5th and <85th percentiles were considered within the healthy weight range [33]), regular consumers of fruit (>1 serves per day) and vegetables (>2 serves per day) and physically active (ranked top 50% for participation in moderate-to-vigorous physical activity measured using objective accelerometry physical activity measures). The criteria for healthy eating were based on the distribution of fruit and vegetable consumption for this group. Increasing the criteria further (i.e. to include more than 2 serves per day), the size of the eligible sample would have been reduced too much to recruit sufficient participants for this study. Fruit and vegetable consumption was used as a marker for a generally healthier diet in selecting participants and was assessed from survey data from an item that asked 'How many serves of fruit (in a separate item-vegetables) do you usually consume each day?'. The child age range was selected, as we were interested in prepubescent children who were considered old enough to participate in an interview session. An analysis of qualitative data relating to physical activity and sedentary behaviours and their determinants in mother-child pairs is to be the subject of a separate paper. From these 67 eligible children, 12 parents did not respond to the study invitation, 8 women refused participation and 6 women had relocated, and following recruitment, there was a dropout rate of 3 (7%) due to work commitments. The remaining 38 children (response rate 57%), along with their mother, participated in the current study. --- Procedure In July 2009, mothers were mailed a letter explaining the study and inviting them (and their child) to participate. After receiving the letter, each potential participant was contacted by phone (no more than twice) by the field manager in order to arrange a time and date for the interview. Interviews were conducted from July to October 2009. Two trained research staff conducted each interview at participant's homes. At each visit, two separate interviews were conducted, one for the mother and one for the child. The child interview was conducted without the mother immediately present (i.e. the mother was in the family home but not sitting in on the interview). The child was not present for the mother interview. With the participant's permission, an electronic dictaphone was used to record each interview and hand written notes were also taken L. K. Williams et al. by a staff member. Interviews followed a specific interview schedule and lasted approximately 20-45 min. Participants were advised that they had been selected because the child consumed relatively more fruit and vegetables compared with other children in the READI cohort and that we were interested in finding out how and why this was the case. At the end of the interview, mothers' were presented with a $25 gift voucher and children a $10 voucher in recognition of and gratitude for their time. Ethics approval for this study was granted by the Deakin University Human Research Ethics Committee. --- Materials The social ecological model guided the development of a semi-structured interview schedule that included questions that assessed mother and child perceptions on supports and barriers to fruit and vegetable consumption, patterns of healthy eating more generally and physical activity. The existing evidence, our own previous research and a series of pilot interviews were used to develop the interview schedule items. Only the healthy eating questions were examined for this paper. Different interview schedules were used for mothers and children. Sample questions from the interview schedule include (mother) 'What do you think helps your child eat a healthy diet?', 'Is there anything that you think makes it difficult for your child to eat a healthy diet?', 'Do you actively do anything that you think helps your child to eat a healthy diet?', (child) 'What do your parents do to help you eat healthy The children's interview also involved the researcher presenting the child a slide show on the computer that displayed various pictures, such as family meals, breakfast, fruit choices and afterschool snacks. Pilot interviews with children indicated that the inclusion of visual aids, such as a computer slide show, helped to make the interviews feel less threatening and also provided children with a prompt that helped them to think and comment on their eating habits and food preferences. The mothers' interview included similar types of questions regarding what they believed was helping (and making it difficult) for their child to eat a healthy diet and what they did as parents to influence their child's eating behaviours. --- Coding and analysis Interviews were transcribed verbatim. The first author then read all the transcripts to develop a detailed hierarchical numerical coding scheme that was used to code all transcripts. Open, axial and selective coding, utilizing NUD*IST (QSR International, 2002) version six qualitative software program, was used to code, subcategorize and unify coding of transcript text [34]. Transcripts were coded to identify mother-child pairs [e.g. 1 (mother) and 1.1 (child of mother 1)]. Template analysis [35] and inductive thematic analysis [36] were used to develop and interpret the themes [37]. For instance, some themes emerged from a list of codes (template analysis) identified in the textual data of the interview schedule, while our knowledge of the literature shaped a further set of themes that emerged from transcript data, not directly related to the interview schedule items (thematic analysis). Researcher triangulation [38] was employed to increase the validity of the data and its interpretation. This was achieved by having the second author read the transcripts and then select a random sample of 10 mother-child transcripts that were cross-coded to check for inter-coder agreement. No major discrepancies in coding or interpretation were observed. --- Results The results are presented around two main themes that emerged from the data: (i) active strategies from parents to promote healthy eating behaviours and (ii) external barriers and supports to healthy eating. Active strategies from parents to promote healthy eating encompassed four sub-themes: parental control and moderation, support for healthy eating, eating rules and parental role modelling. External barriers and supports to healthy eating included three sub-themes: access, advertising and friends/family. Each of the above main themes is illustrated with excerpts from participants. Excerpts from children include their code (calculated as their mothers code plus 0.1), gender and age in parentheses. Excerpts from mothers include their code and the gender and age of their child in parentheses. The code is used in replacement of pseudonyms (pseudonyms are used in excerpts where names have been provided by participants) and to identify mother-child pairs (e.g. participant 10 is the mother of participant 10.1). Theme 1: active strategies from parents to promote healthy eating behaviours Parental control and moderation: limiting and controlling access to unhealthy food The most salient theme that emerged from the interviews from both mothers and children was the perception that children consumed a healthy diet because parents had control over the amount and type of food the children consumed. In some instances, this was directly related to the child's age, with mothers articulating an anticipated decrease in control as their children became older. Parental control over food was enforced by limiting access to unhealthy food, limiting food choice, emphasizing moderation and restricting unhealthy food options to special occasions (e.g. weekends, celebrations). For many mothers, the responsibility of consuming a healthy diet was reportedly in their control and not L. K. Williams et al. the responsibility of the child. This involved much more than simply providing and encouraging consumption of healthy food, it was also about refusing requests for less health food choices, emphasizing moderation and maintaining an 'eat this or nothing' approach to food and healthy eating. I do give them treats occasionally, . . . I try and get them to eat really healthy. I do buy the odd treat for them. Like, there's a box of Nutrigrain up on the shelf . but the kids know that during the week they're to eat Weetbix or something healthier and on the weekend that's a treat for them. So, it's still . they still get their treats. But, in moderation. (11: mother of son aged 7) The impact of such parental control of food was clearly articulated by many children. For the majority of children, food preferences (whether unhealthy or healthy) were directly dictated by taste. Although a small number of children reported eating certain foods to reduce the risk of weight gain or to sustain energy, most children reported taste as the deciding factor for preferred foods rather than health benefits. However, while taste strongly dictated preferences, preferences did not always dictate consumption. Food consumption was reportedly largely governed by parental control. Hence, while a large proportion of children articulated a strong preference for unhealthy foods, they reported that access to these foods was restricted or limited by their parents. Chocolate balls (cereal), they're not allowed to have that as breakfast because I consider them lollies because there's so much sugar in them . . . we buy a jar of Nutella and it's for school holidays . . . (24: mother of son aged 8) My mum sometimes buys chocolate balls which are these round things that are chocolate. It's actually a type of cereal that we're not allowed to have as cereal, we're just allowed to have them as snacks, treats. A treat, it's very rare. (24.1: male aged 8) Well I would like ice-cream [for breakfast] but I know I wouldn't be able to have that. (28.1: female aged 10) Support for healthy eating: encouragement to consume fruit and vegetables, healthy eating education and provision of fruit and vegetables Some mothers reported that they verbally encouraged their children to eat fruit and vegetables, a theme that was reiterated by a small number of children. Maybe if we go down the street and she wants afternoon tea I try and coach her into choosing something that's healthier than something else. Mothers reported that encouragement to eat well was also communicated by educational messages about the benefits of healthy eating. However, although many children reported that they received encouragement to eat well, none of the children specifically reported receiving messages of an educational nature. Although children did not report receiving messages of an educational nature, many children appeared to have a good knowledge of foods, in addition to fruit and vegetables that were and were not healthy. And yeah we had that discussion, the content of sugar in cereals and I showed them on the side of the packet the rice bubbles and they were amazed at that at the time. (24: mother of son aged 8) Support for healthy eating from mothers was not always communicated through verbal encouragement and healthy eating education. Both mothers and children reported the positive impact parental provision of adequate fruit, vegetables and healthy food options had on healthy eating. Mothers reported that their child maintained a healthy diet What helps children eat well? A qualitative exploration because they provided healthy food: in lunchboxes, for dinner and by having a well-stocked supply of fruit and vegetables for snacking. When children were asked what their parents did to help them eat healthy food, almost all respondents reported that their parents provided them with fruit and added vegetables to their meals. Look there's a big fruit bowl I keep on the bench and the kids know they can eat that any time. There are certain foods they can graze on whenever but then there are other foods that it's, you know, off limits. With fruit I mean yeah always two or three pieces in their lunch box. (37: mother of daughter aged 10) They usually make healthy food like vegetable soup and when they make food they put in peas and carrots and lettuce. (7.1: female aged 8) --- Eating rules Many mothers reported that they mandated eating certain meals, namely breakfast. Some mothers also mandated three meals a day. While almost all the children reported consuming breakfast, lunch and dinner, they did not articulate an awareness of this eating rigidity or report any concerns with eating the standard three meals a day. Sometimes Jessica will be ''I'm running late for school, I haven't had breakfast yet'', or ''I've still got to have breakfast''. 'Yes you do have to eat breakfast before you leave, you don't skip breakfast''. You can skip other things if you're running late but yeah you don't skip your breakfast or your tea. (19: mother of daughter aged 10) In addition, many mothers reported implementing specific rules to promote healthy eating. These included prohibiting dessert until vegetables were consumed, consuming leftover fruit from lunchboxes before further food is made available, prohibiting 'junk food' before lunch and mandating a minimum fruit and vegetable daily consumption quota (e.g. must eat two pieces of fruit a day). Many children also articulated an awareness of these eating rules. The rule is you've got to eat three different coloured vegetables . . . You can choose which three but you've got to have three. --- Parental role modelling Compared with direct influences on healthy eating, indirect influences, namely role modelling (both positive and negative) reported by mothers emerged as a less salient theme. Only one child reported an awareness of her parents' eating habits. [I] lead by example. I think we eat a fairly healthy diet. (23: mother of son aged 9) Mum is very healthy. Dad's not completely healthy . . . Dad's nowhere near as healthy as Mum. Mum's always having the healthy food . And Dad's just happy with a sandwich or if he's down the street he might get a pie. (20.1: female aged 10) --- Theme 2: external barriers and supports to healthy eating Access The majority of mothers reported good access to fruit and vegetables within their local community. Some mothers reported the poor quality and range of fruit and vegetables available at supermarkets, yet overcame this barrier by growing their own fruit and vegetables or travelling further to access better quality produce. Some of the mothers resided in rural and provincial areas where fruit and vegetables are the towns primary industry and hence access to fresh seasonal produce (e.g. from orchardists and 'pick your own' produce outlets) acted as an environmental support to healthy eating. Residing in these rural areas, for some, also resulted in less access to mainstream take-away options and fast food, which mothers reported reduced their child's consumption of these unhealthy options. --- L. K. Williams et al. We basically have to buy our fruit and vegetables from a supermarket whereas if we went to much of the bigger towns that are nearby you've got access to the mini-markets and more of a range. I think that we're very limited. So we're going to extend the veggie patch this year. Yeah, we've got lettuce, at the moment we've got silver beet in there, garlic, we've got the herbs out the front . and peas, yeah. We grow it to eat it. (20: mother of daughter aged 10, rural resident) The school have the Stephanie Alexander program so they cook and they've got the garden and they grow everything at school as well. And living out here you've got the market gardens, and the fruit stalls and everything out there. So the special treat when they go shopping is they used to get given an apple. (24: mother of son aged 9, rural resident) Yeah seasonal fruit is fantastic and so this area for seasonal fruit is really good. It's free and it's fresh and it's off the tree so you can't get better than that . A good thing about this region is there's beautiful peaches, apricots, like all our friends are mostly orchardists so we just duck around and pick some peaches or pick some apricots. Yeah so seasonal is a big deal. We try and avoid having apples or things that are out of season. (29: mother of daughter aged 13, provincial resident) For those children who had access to a school canteen, it was reported that canteens acted as a support for healthy eating with almost all school canteens banning or limiting unhealthy food items. There's no lollies or chocolates or chips or anything like that [at the canteen] anymore, it's all just . healthy options now. [1: mother of son aged 11] [The] school canteen, which is just starting this, just the end of last semester. It's, it's pretty healthy . . . I'm sort of part in there, helping out. And we're all doing healthy food. --- Advertising The majority of mothers and children did not report that advertising negatively influenced their food purchasing or consumption behaviours. In fact, many mothers and children reported the positive influence that some advertisements had on healthy eating. Some children also reported that while some of the unhealthy advertised foods appeared appealing, they did not pursue attaining advertised products due to knowledge of them being unavailable to them (due to geographical or parental restrictions). Actually we both enjoy watching . there's a Safeway ad that tells you about what fruit and vegies to eat now and we both watch it. If one of us misses us the other will come and say, ''Look this is the one that's in season. Let's get this and try this''. Or if it's a new fruit we haven't seen we always try to get it. --- Friends/Peers Children and mothers reported both the negative and positive influence of their siblings, friends and peers on healthy and unhealthy eating predominantly through verbal comments, peer modelling and from the presence of desirable healthy and unhealthy food items in friends' lunchboxes. If you're over at a friend's house they'll go and get chips or something . . . Then I'll normally have chips with them. (25.1: male aged 12) [My child] is in prep and he'll see something in someone's lunch box and he'll come home and What helps children eat well? A qualitative exploration say ''I want that tomorrow'' .he definitely does that. [1: mother of son aged 11] I made some dairy gluten free vegetable slice and it was lovely cold. We sat there and had it together. She came home from school, ''I'm never having that again''. ''Why not?'' ''The kids said it was disgusting and they was teasing me''. I said, ''That's okay, you just tell them that they're missing out on good stuff''. [2: mother of daughter aged 8] --- Discussion The purpose of the current study was to explore the family and environmental factors underlying resilience to unhealthy eating. Individual interview discussions with mothers from disadvantaged neighbourhoods and their children revealed the presence of parental strategies and external barriers and supports to promoting healthy eating behaviours. This is one of the first studies to include both mother and child reports and focus exclusively on low SEP families of children who eat well. Our study underscores the importance of focussing specifically on 'resilient' children (i.e. those eating relatively well) to further elucidate potentially effective parent-child attitudes and behaviours in preventing unhealthy eating. Compared with previous studies that have predominantly focussed on the barriers to healthy eating and a healthy weight status, our results highlighted the active role mothers from disadvantaged neighbourhoods played in promoting healthy eating. For instance, almost all the mothers in the current study believed that parents were the main vehicle for influencing healthy eating and as a result, they exercised significant control over their child's food by implementing 'food rules', providing access to fruit and vegetables and restricting unhealthy food items. Although there is some evidence to suggest that excessive control over access to certain foods and implementing food rules has a negative effect on eating and weight [18,19,21], the children did not report their mothers to be too strict or controlling. Perhaps, this was because mothers also offered education and explanations about unhealthy food items and promoted the importance of being healthy. It is also possible that the children in the current study, particularly those who were younger, were also accustomed to this parenting style (or unaware of anything different) and shared similar attitudes about food and eating. These parenting attributes (i.e. strict, restrictive, yet encouraging and supportive) are consistent with an authoritative parenting style, which has been demonstrated as a positive predictor of healthy eating and weight status [16]. The emotional climate created by authoritative parents is one of the high strictness and involvement, warmth, emotional support, appropriate granting of autonomy and clear, bidirectional communication [39]. As parenting is a learned process, teaching parents to implement practices inherent in an authoritative parenting style (e.g. by accepting responsibility for their child's diet, prohibiting unhealthy foods and encouraging and modelling healthy food choices) is a viable avenue for nutrition promotion interventions among low SEP families. In addition, children in our study had a good knowledge of healthy and prohibited foods, despite not articulating an active awareness of specific food-related education. The finding that transference of healthy eating education from mother to child was likely internalized by children highlights potential limitations of relying on children's selfreport in evaluation of health promotion interventions. The results from our study also highlighted some environmental influences as both barriers and supports to healthy eating among families residing in disadvantaged neighbourhoods. Previous research has indicated the negative impact on eating of advertising and poorer access and availability of healthy food options [40,41]. Some mothers from our study reported instances of poor availability and quality of healthy produce yet many had developed strategies to overcome these barriers, namely, through responding to and creating more sustainable access to fruit and vegetables and other healthy food options. For instance, many families had their L. K. Williams et al. own fruit and vegetable garden, a practice consistently associated with increased fruit and vegetable consumption [23,42]. Although a number of families in the current study benefited from residing in rural or provincial areas where fruit and vegetables were the town's primary industry and accessibility to larger garden space was more available, it is possible that provision of skills and resources for home-grown produce is a potential avenue for increasing fruit and vegetable consumption among low SEP families. Previous research has consistently highlighted the negative impact advertising has on children's eating, yet our results indicated that although some children reported an awareness of the negative influence of food advertising, most children did not feel negatively influenced by televised food advertisements. There are three plausible explanations for this finding. Firstly, many children reported low access to outlets selling unhealthy food, a likely outcome given the large proportion of rural residencies (e.g. limited fast food outlets, small supermarkets). Therefore, children may not be affected by advertising of foods unavailable to them. Secondly and unsurprisingly, given the high control over unhealthy food practices exhibited by mothers when children reported desirability for unhealthy advertised foods, they perceived these foods as prohibited by their parents. Thirdly, parents who restrict access to unhealthy food may also be more likely to restrict television viewing time, making exposure to these advertisements less prominent. It is possible that these factors offer protection against the negative influence of unhealthy food advertising. Another external support for healthy eating articulated in the interviews was school canteens. At present Victorian Government only stipulates canteen 'guidelines', which are not consistently implemented at each government school [43]. Our data suggest little evidence of canteens serving unhealthy food or acting as a negative influence on children's healthy eating. Although it has been previously reported that consumption of foods from Australian canteens contributes a small amount of daily food intake for children [44], the suggestion that schools are limiting their options to healthy choices is positive. Strengths of this qualitative study are the large sample, inclusion of both mother and child reports and a focus on healthy eating among resilient children from low SEP families. Some limitations of the current study warrant consideration. Reports of external supports and barriers particularly, rely on participants' perceptions of their own local environment, which may differ from objective supports/ barriers. They may also differ across samples, population groups or geographic areas. This limitation was most notable given the large proportion of participants residing in rural and provincial areas. It is interesting to observe that the majority of children identified as resilient to overweight, obesity and unhealthy eating from the larger study resided in rural areas. Although there is no clear evidence that a difference in BMI exists between Australian rural and urban children [30,45,46], the results from the current study suggest certain factors that may be protective of unhealthy eating and potentially overweight and obesity among rural children from disadvantaged neighbourhoods. Given that the study focused exclusively on women and mothers, it does not offer any insight into the role that fathers and other extended family members have on their child's eating. For instance, almost 95% of the sample was married, and although only one child mentioned her father, it is possible that fathers are potential sources of influence on children's healthy eating. A further limitation present in most research that involves interviews is that participants may answer in a socially desirable manner. This limitation is perhaps more salient in the current study where participation in the larger survey had occurred and exposed adult participants to the broad aims and objectives of the research conducted. In the current study, effects of social desirability were minimized by conducting interviews independently for parents and children. In addition, children were not privy to the main aims and objectives of the project. Finally, we only assessed barriers and supports to healthy eating among children who consumed a relatively healthy diet rather than to draw comparisons of those who What helps children eat well? A qualitative exploration consume less adequate diets. There has been much research that has focussed on predictors of unhealthy behaviours and by using a qualitative study design and restricting our sample in this way, it enabled us to generate hypotheses from those who manage to remain resilient about potential avenues for nutrition promotion among disadvantaged children. The results of the current study offer insight into potential avenues for nutrition promotion among disadvantaged children residing in socioeconomically disadvantaged areas. Further research should focus on comparisons of the barriers and supports to healthy eating identified from the current sample among disadvantaged families with children who donot manage to eat well. Although our findings need to be replicated in a larger sample using survey methods, the results tentatively suggest that active parental strategies such as exercising control over access to unhealthy food, provision of education and encouragement for consumption of healthy food, provision of healthy food options and positive role modelling may aid the prevention of unhealthy eating among disadvantaged children. Lessons learnt from families equipped with strategies to overcome environmental barriers to healthy eating, such as skills in sourcing local and home-grown produce, may also facilitate healthy eating among disadvantaged children. --- Conflict of interest statement None declared.

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Is Stress in Contact Centers Inevitable?

It is broadly acknowledged that contact center employees are subject to high levels of stress. In this profession, there is a distinction between back-office and front-office employees. In addition, employees may perform duties in various companies with different characteristics (i.e., human resources practices, job characteristics, social support, work-personal life relationship, among others). Thus, this study focuses on the analysis of the contact centers' (CC) psychosocial work environment and employees' levels of stress and well-being, seeking to understand whether they change due to the specific nature of the duties they perform and the characteristics of the company. This study involved 1440 participants from 15 companies. The results indicate that front-office and back-office duties influence the perception of some job characteristics and their environment and, consequently, the stress and well-being of these employees. Furthermore, the exhaustion and general well-being of employees are seemingly independent of the duties performed and common to all companies. However, the job characteristics, psychosocial environment and employees' levels of cynicism, work engagement and general stress were found to change according to the company in which they worked, thus highlighting the need for action in the psychosocial environment of these work duties.

Introduction Political, social, technological, and economic changes have brought new paradigms and challenges to the organizational world, and it is crucial that organizations adapt in order to remain competitive in the market. CC have emerged in this context and may be characterized as an industry with a high rate of growth, at both international and national levels [1]. CC have become the main form of contact and interaction with customers [2,3], whereby communication is made through a number of channels (i.e., emails, telephone calls), reducing costs for organizations and improving customer service [4]. CC therefore offer various services, ranging from problem solving (and dealing with complaints) to providing additional information [5] and fostering customer loyalty [6], as there is closer proximity between the organization and its customers [7] in so far as there are no geographical barriers and round the clock service is offered [8]. According to the Portuguese Association of Contact Centers (APCC), there are over 80,000 employees in Portugal. However, although CC contribute to a personalized and higher quality customer service, they are associated with high levels of employee turnover, absenteeism, stress and burnout [9]. These consequences are the result of monotonous and repetitive duties, comparable to a modern form of Taylorism [10], where employees have little autonomy over their work and tasks [11] which are neither complex nor challenging [12]. This simplification of work results from a structural division where, in most cases, an employee only performs front-office (answering calls) or back-office (administrative tasks) duties. The lack of rewards is compounded by low pay and a high workload which can have a negative impact on employees' stress and well-being [13]. It should also be noted that the scripts used by these employees, with detailed instructions that structure and organize their intervention [14], enable a high level of control by the organization. Nevertheless, some research has shown that Human Resources practices can be developed [15][16][17] which, combined with the establishment of positive relationships with the supervisor (leaders) and co-workers (peers) [18] can mitigate these negative effects on employees' stress and well-being. In this study, the aim is to ascertain the extent to which the different back-office and front-office duties differ both in terms of the psychosocial work environment, and the levels of stress and well-being experienced by the employees. Considering the nature of the work of front-office and back-office employees, job characteristics, social support, HR practices, work-life conflict, workplace attitudes and well-being and general well-being were compared in both duties. Additionally, this study seeks to ascertain whether these characteristics are identical across all the companies, or whether there may be differences in the tasks performed or in their management. To this end, the employees of a total sample of 15 CC companies were studied, thus making it possible to estimate the proportion of the psychosocial work environment conditions, stress and well-being attributable to the characteristics of the organization. Hence, a further aim is to clarify whether the characteristics inherent to the work of CC are inevitable or whether they depend on the duties performed (i.e., back-office and front-office) or organizational context characteristics. Since there is no theoretical development according to which it might be possible to establish potentially significant differences, this study is of an exploratory nature, seeking solely to ascertain whether there is consistency between the job, context and well-being characteristics of back and front-office employees in fifteen distinct companies. Consequently, this study contributes to the construction of a healthier working environment, in an area characterized by constant growth. --- Theoretical Framework 2.1. Job Characteristics According to the JD-C (Job Demands-Control) model, the demands and control (i.e., autonomy) job characteristics can explain the stress and well-being of employees, and situations of stress occur when the job is characterized by high demands and low control [19][20][21]. Previous studies have shown that CC are associated with high demands related to the way employees are constantly monitored and evaluated [10]. The evaluation of employees is mostly based on quantitative criteria, which consider several factors such as the number of calls, their duration and also the number of calls on hold [12]. Therefore, this excessive workload, resulting from HR systems' pressure to meet the pre-established goals of the organization and the constant monitoring [22] make CC work highly demanding. As for autonomy, CC employees are generally considered to have low control and to be dependent on the planning and organization of the tasks they perform [8,11,23]: In addition to the fact that employees do not control when or with whom they speak, they are obliged to follow scripts that organize and structure their intervention [14]. Thus, and with recourse to the job characteristics model of Karasek [20,21], CC are predicted to be environments characterized by high demands and low control (i.e., autonomy) [2,3,10]. --- Social Support Social support has been recognized as a way of mitigating stress and reducing the negative effects of high demands and low control situations [14,[24][25][26] and the JD-C(S) (Job Demands-Control-Support) model identifies social support as a third dimension that can influence stress at work [20,21]. Social support occurs as a result of the fact that social relationships and interactions at work act as resources to combat job demands [27], as employees receive the information they require and develop different coping strategies that can be used in their daily lives [18]. Since employees with access to more resources are better able to effectively respond to any demands that may arise [2,28], the CC that promote social support may be predicted to promote employees' resources to combat the demands of the task and therefore promote their experience of well-being and reduce their levels of stress. --- HR Practices In the same vein, the HR practices adopted by the organization can also contribute to the well-being of employees [16]. Employees' perception of job characteristics (i.e., demands, control) are influenced by the Human Resource (HR) practices in place [1] which may lead to increased or decreased levels of stress [22]. Several Human Resource Management (HRM) models do not focus on employee performance alone [29,30], such as the HIM (High Involvement Management) Model, which highlights the importance of empowering employees through power, information, knowledge and rewards, while equally ensuring their performance and well-being [31]. The challenge of HRM in relation to CC lies in establishing a balance between HR control practices, geared towards standardizing the work, and HR practices compatible with the HIM model that seek to reduce employees' stress [32,33]. Therefore, it is important to study a broad range of HR practices and analyze their impact on employees' stress and well-being [34,35]. To this end, the recruitment and selection process, the welcoming and integration process, training opportunities, rewards and the performance evaluation process were deemed HR measures that can directly influence CC employees' levels of stress. --- Recruitment and Selection One way to contribute to the well-being of employees is by recruiting people with a suitable profile for the job and the organization [36]. Thus, it is important to invest in the recruitment and selection process, since it can influence the quality of the work, the interpersonal relationships of employees and also the services provided by the organization [37]. In the context of CC, and since these employees perform unchallenging, monotonous and repetitive tasks, the recruitment focus should not be on seeking highly skilled employees, but rather on identifying individuals with soft skills, thus giving priority to behavioral/social skills over technical skills [38]. On the other hand, Chapman and Webster [39] also highlight the fundamental role of recruiters in this context, since they can positively influence employees' perception of the job characteristics. In addition to the responsibility of recruiting people with a suitable profile for the job and the organization (facilitating their integration), recruitment also contributes to employees' adjustment of expectations and behaviors by clarifying their role in the organization [40]. --- Welcoming and Integration Process The welcoming and integration process is important, as it reduces the levels of stress of the new employees, thus providing them with a positive experience at the beginning of their new job [41] and contributing to their well-being [42]. This process fosters the construction and development of the employee-organization relationship, facilitating the sharing of information, internal communication, and team cohesion [43], while also accelerating the new employee's adaptation, since it stimulates the acquisition of knowledge regarding the culture, values and goals of the organization [44]. --- Training Training promotes personal development [45] which contributes to the development of employees' personal resources (i.e., self-control) [46]. Thus, through a set of duly planned learning experiences, individuals acquire new knowledge and technical skills that can facilitate the execution of their tasks, which in turn reduces job demands [47]. In fact, training can be a strategy used by HRM to alleviate stress, as the sharing of knowledge and strategies are tools which better prepare employees to respond to job demands [48]. --- Compensation and Rewards Several CC have adopted a variable salary component for all the employees who meet the pre-established objectives and goals. Batt [49] has identified this incentive compensation as an HR practice that is compatible with the HIM model, which equally values employee performance and well-being [31]. This HR practice aligns the interests of the organization with the interests of all its employees [50], contributing to job satisfaction and the well-being of employees [51] who feel that their effort is being rewarded [52]. --- Performance Assessment Performance assessment consists of the continuous monitoring process of employees' behavior and performance, which enables an assessment of how efficiently they perform their duties [53]. CC use high levels of monitoring with quantitative and qualitative criteria by which employees are assessed [54]: These criteria include not only customer satisfaction, but also the number of calls made, their duration, and the number of calls on hold [3,4,12]. This practice ensures standardization of the job but can have a negative impact on employees' well-being [9]. In fact, according to Deery, Iverson and Walsh [14], high monitoring levels are for several reasons associated with increased levels of stress among employees. Firstly, stress may result from high demands which may lead to a role conflict [55], as employees are expected to establish a positive relationship with customers. However, on the other hand, they are also obliged to meet quantitative criteria (i.e., quantity and speed of calls), leading to an intensified workload [8]. Moreover, there may be additional pressure to meet the pre-established goals, since in most cases CC employees work according to an incentive compensation system [56]. Secondly, the high degree of monitoring reduces employees' autonomy, as they are obliged to follow scripts that structure and organize their interaction [57]. Finally, besides a heavy workload and limited autonomy, the constant monitoring to which they are subject also implies high emotional regulation on the part of these employees, as their performance is also assessed through customer satisfaction [15]. Employees therefore use the few resources they have to combat the additional stress they experience as a result of being observed, instead of focusing on providing a quality service [58]. However, Grant and Higgins [59] maintain that performance assessment can have a positive impact on the well-being of employees. According to these authors, monitoring can be a means of identifying training needs, thus promoting the development of employees' new skills and knowledge, which, as previously mentioned, is associated with the reduction of stress levels [47]. In this regard, the effects of monitoring and its impact on employees' well-being depend on how the performance assessment data is used. --- Work-Life Conflict According to the role conflict theory [60], an individual's resources are finite and decrease according to the roles they play. Thus, and based on the resource scarcity (i.e., time, energy) hypothesis, role conflict arises when the demands of each domain are incompatible, and the individual is obliged to choose where to apply these resources [61]. As resources are finite, when individuals participate in one domain (i.e., work), this implies an investment of their resources (i.e., time and energy), and consequently their participation in other domains is compromised [62][63][64]. The job characteristics of CC are associated with high levels of stress, impairing employees' participation in other fields. --- Attitudes and Well-Being at Work 2.5.1. Organizational Commitment Organizational commitment is a psychological state which defines the employee's level of identification with the organization and its objectives [65] As an attitude, organizational commitment reflects the bond which links employees to the organization for which they work [66]. According to Meyer and Allen [67], this bond may be represented in different ways (i.e., affective, normative and continuity commitment), which condition the behavior of employees. Affective commitment is negatively associated with stress [68], as employees develop a positive emotional relationship with the organization and regard its goals as being compatible with their own [69], leading to a reduction in the ambiguity of their role [70] which enhances their well-being [71]. It has been acknowledged that CC are associated with high levels of stress and therefore affective commitment may be used as a resource [72] to combat stress [73]. The studies of Schmidt [74] conclude that, due to the job characteristics of CC, employees with an emotional connection to the organization display lower burnout levels than their co-workers. --- Work Engagement Work Engagement is a stable and persistent psychological state which reflects the wellbeing and motivation of employees at work [75]. According to Schaufeli and Bakker [76], it is through work engagement that employees' energy levels are expressed, reflected in their effort and persistence in the face of difficulties (vigor), their enthusiasm, pride and inspiration (dedication) and also the intrinsic pleasure and concentration associated with the performance of their duties (absorption). Thus, it may be concluded that a workforce with high engagement may constitute a competitive advantage [77], since this variable is positively associated with job satisfaction [78], general well-being [77] and is, consequently, negatively related to stress [76]. However, engagement depends on the resources (social, physical and organizational characteristics) obtained by individuals and used in the work context [79]. Therefore, the organization should provide the resources required by all its employees in order to promote their intrinsic satisfaction and enhance their well-being. --- Burnout According to Maslach and Leiter [80], burnout is a means of identifying stress in the workplace, reflected in the employee who has not been able to adapt to the duties/organization. This may be operationalized as a prolonged response to emotional and interpersonal stressors at work and may be analyzed through two core dimensions: Exhaustion and cynicism [75]. Exhaustion refers to feelings of extreme fatigue, emotional overload, and a lack of energy and emotional resources to perform one's work. Cynicism consists of adopting negative, cold, and distant attitudes towards work [80]. Maslach, and Leiter [80] have identified a number of burnout risk factors such as excessive workload, lack of control, and low pay. Thus, low control, a high workload and low pay contribute to the onset of burnout in CCs [81]. Moreover, burnout is negatively associated with employee satisfaction and well-being, and positively related to stress [81]. Thus, one of the challenges faced by organizations is that of adopting measures that contribute to the reduction of burnout. --- General Well-Being According to Johnson, Cooper and Cartwright [82], there is a correlation between job satisfaction and the physical and psychological well-being of employees. Thus, it is important to analyze dimensions such as job characteristics, social support and the HR practices adopted by the organization in the context of CC, as these variables can explain and predict the satisfaction and general well-being of employees [11]. Considering job design and the job characteristics model [23], it may be said that work in CC is monotonous and demanding and employees have a low level of autonomy. Therefore, low job control, high job demands, and the limited diversity of tasks have a negative impact on employees' satisfaction and are also associated with high levels of stress [12]. Although there is little flexibility in terms of monitoring and job design in CC, several studies have pointed to a solution being found in the HR practices adopted by the organization [8] and the promotion of social support, as both these features can mitigate the effects of stressors [22]. Such is also the case with organizations that implement measures to foster a work-life balance, as they increase employee satisfaction and, consequently, contribute to their general well-being [83]. --- Method --- Procedure and Sample The data collection for this study was carried out as part of a research project conducted within the scope of a partnership with the Portuguese Association of Contact Centers (APCC), with the purpose of identifying and diagnosing psychosocial risks at work in the context of CC. To such end, associated companies were contacted by APCC management to participate in the study. The employees of the CC companies who agreed to participate were notified by HR of the objectives of the study and were invited to take part in the study. Through the SurveyMonkey platform, a link was generated which directed participants to an online survey. Finally, the employees were informed that their participation was voluntary, confidential and anonymous. A convenience sample was obtained, corresponding to a total of 2232 employees from 15 different CC companies, with a response rate of over 70% (ranging from 71% to 81% among the companies, corresponding to 32-432 respondents per company). However, due to a lack of responses to some of the assessed scales, only 1440 participants were considered for the study. The characteristics of the sample are presented in Table 1, in which the characteristics of the whole sample of front-office and back-office employees are presented. --- Measures Job Characteristics. Job demands and control (i.e., autonomy) were measured by means of the Job Content Questionnaire (JCQ) [84], as the Portuguese version had already been used in previous studies [85]. Therefore, using a Likert scale of 1 (I totally disagree) to 5 (I totally agree), the participants responded to a questionnaire composed of 7 items that analyzed job demands (e.g., I have too much work to do) and 4 items referring to the level of autonomy they had at work (e.g., I have control over what happens in my work). Thus, high scores in these two scales indicate high demands and high autonomy, respectively. The two scales have a good rate of internal consistency, as Cronbach's α was always above 0.7 [86] (0.88 and 0.88 for demands and 0.84 and 0.85 for autonomy, for front-office and back-office employees, respectively). The JCQ was also used to measure social support [86] through 5 items that analyzed supervisor support (e.g., My supervisor is concerned about the well-being of his/her employees) and 6 items regarding peer support (e.g., The people I work with help in the accomplishment of tasks). The participants assessed the extent to which they agreed with each statement using a Likert scale of 1 (I totally disagree) to 7 (I totally agree). High scores correspond to a high level of supervisor support and peer support. Internal consistency rates were 0.88 and 0.89 for supervisor support and 0.86 and 0.87 for peer support, for front-office and back-office employees, respectively. Human resources practices. Human resources practices were analyzed with recourse to an adaptation of the scale used by Chambel, Castanheira, and Sobral [87], based on the scales of Lepak and Snell [88], Slattery, Selvarajan, and Anderson [89], Takeuchi, Lepak and Wang [90] and Chambel and Castanheira (2012) [1]. The questionnaire consisted of a total of 22 items which analyzed the various human resources practices adopted by the organization to which the participants responded using a Likert scale of 1 (I totally disagree) to 7 (I totally agree). Recruitment was measured by 4 items (e.g., When I was recruited by this company my specific knowledge was analyzed), presenting a Cronbach's α of 0.80 and 0.83 for front-office and back-office employees, respectively. The welcoming and integration process consisted of 4 items (e.g., When I started working in this company I had initial support from my supervisor) and Cronbach's α was 0.83 for front-office and 0.81 for back-office employees. Training was analyzed by means of 5 items (e.g., With the training/experience I have received I can easily change roles within this company), with a Cronbach's α of 0.91 for front-office and 0.90 for back-office employees. Performance assessment was measured by 4 items (e.g., The performance assessment criteria are clear in this company), with a Cronbach's α of 0.88 for front-office employees and 0.91 for back-office employees. Finally, compensation was analyzed by means of 5 items (e.g., In this company, the criteria for assigning the variable component of the salary are clear), with a Cronbach's α of 0.88 and 0.90 for front-office and back-office employees, respectively. High scores in these dimensions indicate that employees had a more positive perception of the HR practices in place. Work-life conflict. The work-life conflict was measured through the Portuguese version of the scale of Keeney, Boyd and Sinha [91], used by Chambel, Carvalho, and Cesário [92]. It considers 8 work-related domains: Health, family, home management, friendship, education, love relationships, leisure, and community involvement. However, the latter domain was not considered for this study since people in Portugal do not have a high and systematic involvement in community activities [92]. The interference of work in one's personal life may occur in two distinct dimensions, namely time (e.g., Work takes the time that I would like to spend with my family away from me) and stress (e.g., Due to all the pressures of work, I am sometimes too stressed to engage in family activities). Each was measured by 7 items and participants had to assess the extent to which they agreed with each statement using a Likert scale of 1 (I totally disagree) to 5 (I totally agree). Cronbach's α for time was 0.93 for front-office and back-office employees, and for stress 0.94 and 0.95 for front-office and back-office employees, respectively. Affective organizational commitment. Affective organizational commitment was measured through the Portuguese version of Meyer, Allen and Smith's [68] scale used in the study of Chambel and Castanheira [15]. The scale is composed of 6 items (e.g., This company has a high personal meaning to me) that were answered using a Likert scale of 1 (I totally disagree) to 7 (I totally agree). This scale also presented good internal consistency, since Cronbach's α was 0.88 for front-office employees and 0.90 for back-office employees. Well-being at work. Well-being at work was measured by work engagement and burnout. Work engagement was analyzed using the Portuguese version of the Schaufeli, Bakker and Salanova [93] scale, used previously by Chambel et al. [87]. This version consisted of 3 items to measure vigor (e.g., In my work I feel full of energy); 3 items for dedication (e.g., I am enthusiastic about my work) and 3 items for absorption (e.g., I am immersed in my work). Participants' responses were measured using a Likert scale of 1 (Never) to 7 (Everyday) and high scores indicate high levels of work engagement. Considering the front-office and back-office employees, Cronbach's α were 0.94 and 0.95 respectively. Burnout was measured by means of the Portuguese version of the Maslach, Jackson and Leiter [94] scale, used previously by Chambel and Castanheira [15]. This scale is composed of 5 items that analyze exhaustion at work (e.g., I feel exhausted by my work) and 5 items related to cynicism (e.g., I have lost enthusiasm for my work), both measured on a Likert scale ranging from 1 (Never) to 7 (Everyday). As with engagement, high scores indicate high burnout levels. For exhaustion, Cronbach's α was 0.92 for both front-office and back-office employees, while for cynicism, Cronbach's α was 0.85 and 0.84, respectively. General well-being. General well-being was measured through an adapted version of the General Health Questionnaire (GHQ-12 [95]). This questionnaire is composed of 12 items (e.g., Have you been feeling sad and depressed?) and the participants responded using a Likert scale of 1 (Not at all) to 4 (Much more than usual). The scale was subdivided into two dimensions in order to analyze employees' stress and well-being, not in a professional context, but on a general level (i.e., in a free context). Regarding internal consistency, Cronbach's α showed no differences between front-office and back-office employees, standing at 0.84 in the stress sub-scale and 0.87 in the well-being sub-scale. --- Data Analysis The data analysis was performed through the IBM Statistical Package for the Social Sciences (SPSS 25.0, IBM, New York, NY, USA) program. In order to characterize the sample, a descriptive analysis of variables such as gender, age, marital status, qualifications, work shift and tenure of the respondents, was conducted for the whole sample and for both front-office and back-office duties. A descriptive analysis of the instruments used was then carried out, which made it possible to calculate the main measures of central tendency and dispersion of each of the studied variables. The Student t-test was performed to verify whether the means of the two groups, both front-office and back-office, were statistically different. The Cronbach's alpha of each scale was also calculated to analyze the internal consistency. Finally, the intra-class correlation coefficient (ICC) was calculated to evaluate the amount of variation in the responses at the individual level for each scale that can be explained by the variability among the 15 CC companies. The intraclass correlation (ICC) was calculated to assess the amount of variance in individual-level responses for each variable that can be explained by variability among the fifteen organizations: ICC = (msb -msw)/(msb + ((ng -1) msw)) (1 ) where msb is the between-group mean square, msw is the within-group mean square, and ng is the group size, [96]. The higher the ICC value, the higher the proportion of total variance in a subscale is explained by organizational membership. When evaluating the ICC, values exceeding 0.05 are considered relevant for aggregation of individual-level data to a higher organizational level, and 0.20 is considered to be a high level. Thus, it is possible to identify which of the organization's characteristics influence the psychosocial work environment and the stress and well-being of its employees. --- Results Table 2 shows the mean (M) and standard-deviation (SD) of the variables in the sample under study and by means of the Student t-test, the comparison of means between the back-office and front-office groups may be observed. On the basis of this comparison, it was possible to verify that the employees of these two groups have a similar perception in several of the factors considered, showing that the latter are independent of the duties. Thus, it was possible to observe that employees in both groups have a moderately high perception of job demands and feel that there is moderate supervisor and peer support. As far as HR practices are concerned, employees have a slightly positive perception of the integration and recruitment processes, as well as the training and assessment carried out by the organization. Employees show a weak affective commitment to the organization, relatively low work engagement, relatively high cynicism in the exercise of their professional activity and weak general well-being. However, it was possible to observe some significant differences between the two groups. Front-office employees show lower values in the perception of autonomy, higher values in compensation, work-life conflict (stress dimension) and exhaustion, but lower for general stress. Thus, and although the conditions are similar, the results appear to indicate that front-office and back-office duties influence the perception of some job characteristics and the environment and, consequently, their own well-being. The Intra-class Correlation Coefficient (ICC) values of the variables analyzed in this study may be observed in Table 3, through which the proportion of variance explained by the organization for each duties, front-office and back-office, may be verified. As the number of participants in each organization differed, the Bonferroni test was conducted for each variance analyzed. As far as back-office employees are concerned, some of the job characteristics (job demands, autonomy, supervisor and peer support) of the work environment (recruitment, integration, training, performance assessment, compensation, and work-life conflict-stress dimension) and employees' attitudes and stress and wellbeing (affective organizational commitment, work engagement, cynicism and general well-being-stress dimension), are observed to present significant differences among the various companies (ICC values ≥ 0.05). Thus, these dimensions are dependent on the company, suggesting that back-office work may vary according to the company in which the employee works. On the other hand, exhaustion, work-life conflict (time dimension) and general well-being (well-being dimension) appear to be common to all companies, since they do not present significant differences in variance (ICC values < 0.05). As regards front-office duties, significant differences in variance in job characteristics (job demands, autonomy, peer support), work environment (recruitment, integration, training, performance assessment, compensation, and work-life conflict-stress and time dimension) and attitudes and stress and well-being (affective organizational commitment, cynicism and general well-being-stress dimension) may be observed. However, this is not the case for supervisor support, work engagement, exhaustion and general well-being, -well-being dimension), since no significant differences in variance are observed and, therefore they are common to all companies. Thus, it may be concluded that feelings of exhaustion and general well-being in CC appear to be independent of the duties performed or of the companies in which employees develop their professional activity. On the other hand, the remaining job characteristics, namely those related to environment, attitudes and stress and well-being depend either on the duties performed or the company's characteristics. --- Discussion This study sought to ascertain whether the characteristics of CC work are inevitable or whether they depend on the duties performed, namely front-office or back-office, and the company's characteristics. It was possible to observe significant differences between the two functional groups: Front-office employees appear to have a more negative perception of autonomy and a greater perception of work-life conflict (stress dimension), consequently presenting worse levels of exhaustion. On the other hand, when comparing the results of fifteen different companies, job characteristics, environment, and levels of stress and wellbeing of the employees show significant differences, indicating that these characteristics are not inevitable in CC but rather depend on each company's management strategy. Regarding job characteristics, as expected, the CC context was found to be characterized by high demands and low control, resulting in high stress and low well-being levels [19][20][21]. However, front-office employees perceived less autonomy compared to back-office employees, in line with the assumption that the use of scripts that organize and structure the making of calls in the case of front-office duties [12] has negative repercussions for control in terms of the planning and organization of the tasks performed [8,11]. When comparing the professionals of these two groups, front-office employees presented higher levels of stress [67], namely exhaustion, which, in line with the role conflict theory [60], had an impact on a higher perception of work-family conflict (stress dimension). On the other hand, this study managed to demonstrate innovatively that stressful characteristics [21] (high demands and low control) are not inevitable in the context of CC, as the data suggests variability among the companies and both back-office and front-office duties, showing that it is possible to reduce the workload and increase the autonomy of employees by redesigning these duties. In fact, the data of this study suggest that employees' stress and well-being levels may differ [2,19] as the quantitative requirements that are associated with monitoring and performance assessment [12,54] and employees' autonomy, giving them some freedom to plan and organize the tasks they perform [8,11], may also vary depending on their occupation and company. Regarding social support on the part of the supervisor, this study identified a similarity among all the companies for employees with front-office duties. It suggests that the need to monitor and assess customer service may favor the standardization of supervisory duties among different companies. Given the knowledge that social support increases the resources required by employees to deal with high demand situations [47], this study highlights the need to promote the ability of supervisors to offer adequate social support in the context of CC [14]. On the other hand, the HR practices analyzed were considered to depend on the company. If these practices are considered fundamental to explain the results obtained in the context of CC [8], but also to explain the perception of the job characteristics themselves [15], then the following measures are sorely needed: Investment in appropriate recruitment and selection processes adapted to the duties [40]; investment in welcoming and integration programs that foster the creation of positive interpersonal relationships among employees [43]; provision of specific and planned training in order to increase employees' resources [47]; adoption of a remuneration model that is compatible with the HIM model [49]; and the use of performance assessment as a diagnostic tool which aims to identify features requiring improvement [59]. As for work-life conflict, stress was considered to vary depending on the company and is, therefore, an avoidable variable. This suggests that a discrepancy between the demands of the domain in which the employee participates and the resources to which this professional has access [63] is not observed in all companies. Hence, and although employees have a relatively neutral perception of the work-life conflict, organizations should take measures to promote a balance between these two domains [60]. Regarding attitudes at work, affective organizational commitment was considered to vary depending on the company, and significant variance was observed in both frontoffice and back-office groups. Affective organizational commitment reflects the bond employees experience with their organization [66] and may be used as a tool to combat their stress [68]. As this positive attitude depends on the organizational context, namely the human resources management practices in place [32], and as the perception of these practices differs depending on the company in question, differences in attitude were also expected. However, and since the data suggests that participants have a neutral perception of affective commitment, it is imperative to focus on developing a positive emotional relationship between employees and their organizations [68] in order to promote their well-being [71]. As for well-being at work, differences in relation to burnout were observed between the two core dimensions of this chronic stress at work syndrome: Exhaustion appears to be cross-cutting and independent of the company and back-office or front-office duties; cynicism, conversely, appears to be dependent on the company for both back-office and front-office duties. This difference may be justified if the development of the burnout syndrome, as posited by the Conservation of Resources theory (COR, [97]), is taken into account. According to this theory, employees invest strongly in the acquisition of resources to meet the excessive demands with which they are confronted during their professional activity, resulting in a feeling of high exhaustion which characterizes a stress situation. Thus, working in a CC may be considered a highly demanding situation conducive to stress (i.e., exhaustion), as employees tend to perceive a loss of resources, the threat of resource loss or to invest in resources to face these demands. However, in order to cope with these same demands, employees use coping strategies, which may or may not trigger distancing responses, i.e., cynicism. If the context does not provide resources to protect employees from this sense of loss or threat of loss, they tend to drain their energy resources, and consequently, to protect themselves they will adopt an attitude of detachment which will result in cynicism, a characteristic of the burnout syndrome. However, if the context provides resources (e.g., control, social support, human resource practices that respond to employees' needs), this stress situation may not become a burnout situation, as individuals do not need to adopt this cynical distance to deal with such situations of loss or threat of loss of resources. With regard to work engagement, this positive psychological state appears to depend on the company for employees with back-office duties; however, it is cross-cutting and independent of the organization for front-office duties. Considering that work engagement is mainly dependent on the resources available to employees in the accomplishment of their tasks [76], in the case of back-office duties, there appear to be situations where the availability of resources varies, thus leading to variable degrees of work engagement, while in front-office duties the differences in resources are not sufficient to reflect differences in this indicator of well-being at work. In line with the results obtained, supervisor support was also found to be a resource that appeared not to differ among companies for employees with front-office duties. Since this resource has an extrinsic motivational role for being instrumental in the acquisition of work objectives, but also intrinsic for being able to satisfy the basic psychological need for relationships [98], it can play a central role in the development of these employees' work engagement. Finally, and analyzing general well-being, it is possible to observe that general stress is dependent on the company and for both back-office and front-office duties. This result shows that organizations can implement a number of strategies to mitigate employees' stress. Furthermore, according to the burnout literature [99] and the health impairment process proposed by the Job Demand-Resource Model [76], burnout leads to different health problems outside the work context. As previously mentioned, although the levels of exhaustion (i.e., stress) are common to the different companies, their association with cynicism (i.e., burnout) is dependent on the company, hence the levels of stress outside the work context may also be dependent on the company. In conclusion, this study appears to corroborate the idea that working in a CC implies experiencing stress in the accomplishment of one's work, as the levels of exhaustion are independent of back-office and front-office duties and of the company in which one works. However, the development of burnout (i.e., cynicism) and general ill-being does not appear to be inevitable as the emergence of these conditions depends on the company in which the duties are performed. Moreover, job characteristics, peer support, HR practices, work-life conflict (in the stress dimension) and affective organizational commitment also appear to depend on the company. Thus, this study suggests that through a structured and planned intervention at the organizational level, it is possible to promote a healthier work environment that will foster the well-being of employees. --- Limitations and Future Implications A number of limitations need to be addressed regarding the present study. First, the method used for data collection may have skewed the results, since a self-assessment questionnaire was used, which was disclosed internally by each company's HR department. Thus, and despite the anonymity of the responses, they may contain some level of social desirability. Secondly, as this is a cross-sectional study, the data refers to a single point in time, which does not allow for the establishment of cause-effect relationships. Therefore, it was only possible to make inferences with regard to the assessment of positive or negative relationships between the studied variables. It would be interesting to conduct a longitudinal study in order to analyze any further developments in the perception of employees regarding the factors studied in this research, as well as to monitor intervention plans that may have been applied. Thirdly, the sample consisted only of employees from Portuguese CC, and it was not possible to generalize the results to other countries or other sectors of activity. In the future, it would be important to compare the results obtained in this study with those of other countries and/or other sectors that are dominated by customer service, such as the hotel industry or trade employees. Finally, the quantitative analysis used in this study does not allow for a comprehensive vision of employees' experience in a contact center context. In the future, it would be interesting to conduct a qualitative study that could examine the meaning of the employees' history in this context, analyzing their experiences (e.g., peer support climate, supervisor support strategies, learning of day-to-day problem-solving strategies) and respective repercussions for their well-being and health. --- Conclusions This study provides evidence that the specific nature of the duties performed by Contact Center employees, i.e., front-office and back-office duties, has an impact on how they perceive their job characteristics and environment and, consequently, on their wellbeing. In addition, it highlights that although the exhaustion and general well-being of CC are independent of their duties and common to all employees regardless of the company in which they work, job characteristics, psychosocial environment, and the levels of affective organizational commitment, cynicism, and general stress of CC employees depend on the company in which they work. --- Data Availability Statement: The data presented in this study are available on request from the corresponding author. --- Author Contributions: D.G.-C. was involved in the design, writing and original draft preparation of this paper. M.J.C. was involved in the data collection, design supervision, writing, methodology and formal analysis. V.S.C. was involved in the reviewing and editing process. All authors have read and agreed to the published version of the manuscript. --- Institutional Review Board Statement: The study was conducted according to the guidelines of the Declaration of Helsinki, and approved by the Ethics Committee of Faculty of Psychology, University of Lisbon (protocol "The management of the work-personal (family) life border in the case of temporary workers" approved on 20 November 2019). Informed Consent Statement: Informed consent was obtained from all subjects involved in the study. --- Conflicts of Interest: The authors declare no conflict of interest.

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Examining human rights and mental health among women in drug abuse treatment centers in Afghanistan

Denial of human rights, gender disparities, and living in a war zone can be associated with severe depression and poor social functioning, especially for female drug abusers. This study of Afghan women in drug abuse treatment (DAT) centers assesses (a) the extent to which these women have experienced human rights violations and mental health problems prior to entering the DAT centers, and (b) whether there are specific risk factors for human rights violations among this population. A total of 176 in-person interviews were conducted with female patients admitted to three drug abuse treatment centers in Afghanistan in 2010. Nearly all women (91%) reported limitations with social functioning. Further, 41% of the women indicated they had suicide ideation and 27% of the women had attempted suicide at least once 30 days prior to entering the DAT centers due to feelings of sadness or hopelessness. Half of the women (50%) experienced at least one human rights violation in the past year prior to entering the DAT centers. Risk factors for human rights violations among this population include marital status, ethnicity, literacy, employment status, entering treatment based on one's own desire, limited social functioning, and suicide attempts. Conclusions stemming from the results are discussed.

Introduction Due to its long history of war, Afghanistan has endured extreme poverty, lack of employment, a large refugee population, extreme division of social class, inadequate educational infrastructure, horrific violence, and millions of civilian casualties since 1979. [1][2][3][4][5] While living in a war-torn country takes its toll on the entire population, the situation in Afghanistan is especially harsh on Afghan women, as they are often considered unequal to their male counterparts and in many cases are subsequently abused, denied education, health care, employment, and other basic human rights. 6,7 Denial of human rights, gender inequality, and living in a war zone have been linked with severe depression and poor social functioning. [7][8][9] Research has shown that such mental health problems are often present among female drug abusers. 10,11 Further, because Afghanistan is a major source of the global supply of opium and hashish, 12 and because opium is commonly used by Afghans for medicinal purposes, 12,13 Afghan women face a unique and significant reality in which they have easier access to illegal and psychotropic drugs than they do to drug abuse treatment, education, or health care. While studies have begun to look at this important issue by reporting prevalence of human rights violations and mental health problems among Afghan women, [6][7][8][9] this study builds on prior research by assessing the prevalence of these issues among women with serious substance use problems in drug abuse treatment (DAT) centers in Afghanistan, and examining risk factors for human rights violations among this population. --- Women's human rights in Afghanistan The United Nations (UN) Universal Declaration of Human Rights states that everyone is entitled to the rights set forth in the declaration "without distinction of any kind, such as race, color, sex, language, religion, political or other opinion, national or social origin, property, birth, or other status." And, those rights include: the right to not be subjected to torture, degrading, or inhumane treatment; the right to move about freely within your own country; the right to education and work; the right to marry only with full consent of both parties; and the right to a standard of living for the health and well-being of oneself and family. 14 A UN report on the challenges of human rights and cultural diversity further states, "The right to culture is limited at the point at which it infringes on another human right. No right can be used at the expense or destruction of another, in accordance with international law." 15 The rights set forth in the UN declaration helped guide this study and were referenced when developing survey instruments in order to adequately assess the human rights violations experienced by Afghan women. The plight of Afghan women became a highly publicized international concern after the Taliban takeover, which imposed extreme gender-based restrictions on women's human rights punishable by harassment, torture, and death. Although Afghanistan has been characteristically a patriarchal society due to religious and cultural beliefs, as well as the societal structure, Taliban rule brought violent enforcement of laws which were more restrictive and oppressive than traditional life was for Afghan women. 16 Rasekh and colleagues 7 found that during this time women reported poor access (77%) or no access (20%) to health care services, occasions in which they were ill and unable to seek medical care (53%), extreme fear when in public (39%), and extreme restricted social activities (68%). --- Human rights violations and mental health problems The harsh realities of living in Afghanistan, including severe gender-based inequalities and human rights violations, have been linked to serious mental health problems among Afghan women. 8,9 For instance, Rasekh and colleagues 7 reported that when Afghan women were asked about the 2 years post-Taliban occupation, most reported a decline in physical (71%) and mental health status (81%), and a decline in access to health care (62%). Many women reported symptoms of posttraumatic stress disorder (42%), major depression (97%), and significant anxiety (86%). Amowitz et al 8 found that the majority (70%) of Afghan women in their study from Taliban controlled areas attributed their mental health problems to Taliban official policies toward women. Results showed that severe depression was far more prevalent among Afghan women exposed to Taliban policies (78%) than those living in non-Taliban controlled areas (28%). There were also higher occurrences of suicide ideation (65% vs 18%) and suicide attempts (16% vs 9%), and a higher number of those in Taliban controlled areas indicated that the Taliban contributed "quite a bit" or "extremely" to their suicide ideation or attempts (22% vs 2%). Four years after the Taliban rule officially came to an end, Cardozo et al 9 reported results which showed that Afghan women, when compared to Afghan men, were still suffering from poor mental health, including greater symptoms of depression (73% vs 59%), anxiety (84% vs 59%), posttraumatic stress disorder (48% vs 32%), and lower social functioning (M = 2.77 vs 3.92). Most of the sample (62%) had experienced four or more traumatic events, and the most commonly reported traumatic events for females included denial of basic human rights such as no access to health care (54%), lack of food and water (52%), and lack of shelter (46%). --- The current study The results of these studies allude to the potential impact that human rights violations have on Afghan women. Although Taliban rule officially ended in late 2001, the aftermath of its influence is still present in Afghanistan. The effects of intense trauma experienced by Afghan women will subsist for far longer, especially because many of them have turned to substance use in an effort to cope with feelings of depression and hopelessness, to ease pain, and cope with repressive lifestyles. 12,13 Although documented estimates are believed to be low, in 2005 it was estimated that 2% of all Afghan women (120,000) were addicted to drugs. 17 Research shows that women with a history of emotional, physical, and sexual abuse are more likely to engage in substance use as a coping mechanism. 13,18,19 Maguet and Majeed 20 posit that addiction is a direct consequence of physical and psychological violence related to conflict-affected countries. In order to better understand the challenges and problems faced by drug-addicted Afghan women, this study examines (a) the extent to which women in DAT have experienced human rights violations and mental health problems prior to entering the DAT centers, and (b) whether there are specific risk factors for human rights violations among these women. The current paper utilizes data from three of these DAT centers that are for women and their children only. At the time this study began, these centers were located in provinces considered to be in the "safe zone" of the country and thus least likely to have been disrupted by the ongoing war. It should be noted, however, that there have been reported conflicts in these areas within the past 2 years. The names and locations of these DAT centers are confidential. --- Study participants A total of 176 in-person interviews were conducted with female participants between 0-5 days after completing their detoxification process in the DAT centers. One-hundred seventy-two cases were used for analyses after removing four cases that provided more than one inconsistent response, which is a common quality assurance standard in large national datasets (Monitoring the Future investigators, written communication, December 2007). --- Measures Human rights violations Participants responded yes or no when asked whether they had experienced 10 different human rights violations prior to entering the DAT centers. The authors developed these items, based on numerous online news reports, 21,22 the UN's Universal Declaration of Human Rights, 14,15 research articles, [6][7][8] and consultation with an expert panel of four Afghan DAT center directors. Whereas we do not claim this list is exhaustive, the expert panel felt it was representative of the types of human rights violations most commonly experienced by Afghan women. To better understand various types of human rights violations, we conducted a principal component analysis (sometimes referred to as exploratory factor analysis) with varimax rotations on the ten items. According to Pedhazur and Schmelkin, 23 principal component analysis attempts to characterize the majority of the variability in all items with smaller groupings of items, while factor analysis attempts to group items into scales based on those items with the strongest interrelationships. Computationally, the only difference is distinguished by whether the diagonal elements in the correlation matrix analyzed are set to one (ie, principal component analysis, which assumes all variance is explained) or whether the communalities (ie, the variance explained in other items by a particular item) are used as the matrix diagonal. We examined two-, three-, and four-component solutions based on eigenvalues greater than one (2.91, 1.80, 1.26, and 1.05). We chose a three-component solution, as it was the most substantively interpretable solution and adding a fourth component resulted only in a one-item component that only accounted for an additional 11% of the variance. The first component accounted for 29% of the variance in the data and the five items (denied food as punishment, threatened with denial of food or shelter by husband/family, forced to live in social isolation, forced to consume drugs, and forced to work in poppy cultivation) were grouped together and termed Maltreatment. The scale had acceptable internal consistency reliability (α = 0.68), and component loadings ranged between 0.83 and 0.31. The second component accounted for 18% of the variance and the three items (forbidden to drive a car, denied education, and forbidden to go out in public without a male relative) represented activities that we termed Gender-based Inequality. This scale also had acceptable internal consistency reliability (α = 0.73), and component loadings ranged between 0.82 and 0.78. The final component accounted for 13% of the variance and the two items (physical abuse and sexual assault) represented severe forms of abuse, and had an acceptable internal consistency reliability (α = 0.74), and component loadings ranged between 0.91 and 0.89. We ultimately calculated scale scores as an occurrence of any of the behaviors comprising the scale (ie, a dichotomous scale score), as the distributions of the items were heavily left-censored. As a summary measure, we also examined the occurrence of any of the ten human rights violations. Considering the occurrence of all ten behaviors, alpha was still acceptable (α = 0.66). --- Mental health factors Social functioning measures the extent to which physical and emotional health interferes with or limits normal social activities. Four items (developed by Hays et al 24 ) measured the extent and frequency that participants experienced these physical and emotional problems 30 days prior to entering treatment (eg, To what extent did your physical health or emotional problems interfere with your normal social activities with your family, friends, neighbors, or groups?) on two scales, 0 (not at all) to 3 (quite a bit) and 0 (never) to 3 (all the time). The four scale items were internally consistent (α = 0.69). Suicide ideation measures the extent to which the participants had suicidal thoughts 30 days prior to treatment using a single item adapted from Lung and Lee (2008). 25 Participants responded on a 0 (not at all) to 4 (extremely) scale. Suicide attempts was also measured by asking participants if they had attempted suicide (yes/no) 30 days prior to entering treatment. --- Substance use In order to determine the frequency and types of drugs being used among this population, participants were asked how often they used 14 substances in the past 6 months and past 30 days prior to entering treatment. As one goal is to examine the prevalence of substance use among the women in these DAT centers, all items were dichotomized to use (1) or no use (0). Here, we focused only on opium, hashish, heroin, and "crystal" (a potent form of heroin). (The additional substances included in the questionnaire were used by less than 2% of the sample in the past 6 months). Alcohol use was nearly nonexistent in this population with only one participant reporting drinking three out of 30 days prior to entering treatment. This low prevalence of alcohol use is likely because alcohol use is strictly against religious and government law and highly stigmatized. --- Individual characteristics Participants indicated their age (ie, date of birth, which is estimated, because Afghans do not typically keep track of their age), marital status (single, married, separated, divorced, widowed), ethnicity (Pashtun, Tajik, Uzbek, Turkmen, Hazara, Baloch, Kirghiz, Nuristani, Aimak, Arab), living situation prior to treatment (with spouse, with other family), and whether they had children. Participants indicated whether they were literate, their level of education (no school, primary school, secondary school, high school/vocational training, college, or higher), whether they were employed 6 months prior to entering treatment, and whether they had experienced a loss of a close family member due to war/conflict within the last 2 years. Participants rated 18 reasons for entering treatment using a 0 (not important at all) to 3 (very important) scale (eg, "Your family wanted you to go."). --- Data collection PIRE partnered with D3 Systems, Inc, a social and market research company based in Washington DC, and the Afghan Center for Socio-Economic and Opinion Research (ACSOR) in Afghanistan to collect the data for this study. ACSOR was founded in 2003 by D3 Systems and is a registered market and opinion research agency in Afghanistan with trained Afghan researchers and interviewers. ACSOR interviewers for this study included trained medical students residing in Afghanistan. An in-person structured interview that included questions previously validated in other treatment outcome studies was developed by PIRE, and carefully reviewed by ACSOR field staff and an expert panel of four Afghan DAT center directors or associate directors. Revisions were made to clarify meanings and to ensure cultural appropriateness of phrasing and terminology. The final instrument was translated into Pashto and Dari (the primary languages of our sample) and back-translated by ACSOR field managers to ensure linguistic equivalency. The translated instrument was also reviewed independently by two bilingual Afghan nationals contracted by PIRE. Data used in this paper are drawn from the in-person baseline structured interviews that were conducted with female patients in three Afghan DAT centers by ACSOR trained female interviewers from February 2010 to September 2010. Consent forms and interview questions were read aloud by the ACSOR interviewers to the patients due to low literacy levels. Patients were provided with a consent form that was read aloud to describe the study, procedures, risks, and safeguards. Patients first consented to the release of their names and admission dates to the research team, and then to participate in the study. Patients were informed that their participation was voluntary and that their decision on whether to participate would not result in any penalties or benefits to them or to the centers. Patients were informed that their responses would be confidential and that they could decline to answer any questions. If the patient signed the consent form, the baseline interview was conducted at that time in a private room in the DAT centers to ensure confidentiality. The interviews took about 1 hour to complete. Participants were given a US$5 incentive for completing the interview. --- Data analyses Simple percentages and means were calculated to address research questions one and two. For research question two, we rounded scale scores to the nearest integer, such that they could be interpreted according to the actual response scale labels in the questionnaire. Inferential analysis examined relationships with human rights violations for research questions three and four. Research question three was answered by examining the relationship between individual characteristics and human rights violations using logistic regression. The two individual characteristics that were not dichotomous (age and education) were split at the median response to yield 40 years of age and younger versus over 40 years old, and no education versus some education. All four measures of human rights violations (gender-based inequality, maltreatment, abuse, and "any") were regressed on all of the individual characteristics in four analyses. Research question four was answered by examining the relationship of mental health problems and human rights violations using logistic regression. We regressed all four measures of human rights violations on all mental health factors. --- Results --- Individual characteristics Of the 172 female participants with usable data, the mean age was 39 years with a range of 18-70 years. Participants were mainly Turkmen (30%), Pashtun (29%), Tajik (21%), or Hazara (12%). Seventy-two percent of participants were married, 15% were widowed, and 11% were single. Of those who were married, 96% of married participants had an arranged marriage, while 11% reported being forced to marry someone they did not want to marry. Most of the sample had children (70%), and, of those, the average number of children was two per participant with an average of two children living with them at the DAT centers. Before entering the DAT centers, 52% of participants lived with family and 45% lived with their spouse. The majority (88%) did not have any formal schooling. Most of them could not read before entering the DAT centers (91%). Most participants (86%) had not been employed 6 months prior to entering the centers. Thirteen percent had lost a close family member in the past 2 years due to war. When given a list of 18 reasons for entering the DAT center, 63% said that family (including their spouse) wanting them to go into treatment was "very important." Other reasons considered "very important" were: "You decided for yourself that you wanted treatment" (50%); "You had medical or physical problems" (45%); "Your friends wanted you to go" (44%); and "Spouse or family was shamed/stigmatized by drug addiction" (27%). The most commonly abused substances by participants were opium, crystal, hashish, and heroin (see Table 1). A total of 91% had used one or more of these four substances in the 6 months prior to entering treatment, while 88% had used one or more substances 30 days prior to entering treatment. Some participants reported no use in the past 6 months (8%) or past 30 days (10%), which is likely due to some participants trying to stop using drugs while on a waiting list prior to entering treatment. The most abused substance by participants was opium with 68% using in the 6 months before treatment and 66% using in the 30 days before treatment. The second most abused substance by participants was "crystal" (a potent form of heroin) with 28% of participants using in the past 6 months and 22% using in the past 30 days. These four substances account for the majority of substance use reported by these participants. Only three participants (2%) reported using other drugs asked about on the questionnaire (including hallucinogens, cocaine, sosigan, mandrax and heroin, other opiates, methamphetamines, other amphetamines, tranquilizers, barbiturates, other sedatives, or other substances) in the past 6 months and the past 30 days. --- Research question one: extent of human rights violations Considering base rates, 50% of participants reported experiencing at least one form of human rights violations prior to entering the DAT centers; 35% reported gender-based inequality, 36% reported maltreatment, and 4% reported abuse (see Table 2). We realize that 4% is an extremely low base rate, so all correlations listed for abuse must be interpreted with extreme caution. We felt it was necessary to keep abuse in the analyses since physical and sexual abuse are issues Afghan women often face, but rarely self-report due to various reasons such as stigmatization and cultural norms. 12 Research question two: extent of mental health problems As Table 3 shows, almost the entire sample (91%) of women entering the DAT centers experienced some limitations with social functioning (ie, the extent to which physical and emotional health prevented them from engaging in normal social activities) 30 days prior to entering the centers, when defining "slightly/rarely" through "quite a bit/all the time" responses as having limited social functioning. Additionally, a large proportion of the sample (41%) had experienced some suicidal ideation 30 days prior to entering the centers, when defining "rarely" through "extreme" responses as having had suicidal thoughts. Additionally, 27% of participants attempted suicide at least once 30 days prior to entering the centers due to feelings of sadness or hopelessness. --- Research question three: individual characteristics as risk factors for human rights violations As can be seen in Table 4, women who were married (38% vs 29%) were 5.08 times more likely to report indicators of maltreatment, and women of Pashtun ethnicity (62% vs 45%) were 5.80 times more likely to experience at least one of the human rights violations about which we asked. Women who were literate (80% vs 47%) were 14.74 times more likely to report at least one of the human rights violations about which we asked. Women who were employed were 4.76 times (inverse of odds ratio [OR] = 0.21) less likely to report gender-based inequality (17% vs 37%). Women who entered DAT because of their own desire were 2.30 times more likely to report being victims of maltreatment (43% vs 28%), 3.34 times more likely to report gender-based inequality (44% vs 26%), and 2.91 times more likely to report at least one human rights violation (58% vs 42%). 5). --- Research question four: mental health problems as risk factors for human rights violations --- Discussion --- Profile of women entering drug abuse treatment The majority of women in the DAT centers had not received formal schooling, could not read, and had not been employed. This is consistent with the profile of a typical female Afghan drug user who has even less education and is more than twice as likely to not have a job than other females. 12 Lack of education and employment among Afghan females is also due to the fact that they are expected (sometimes forced) to marry young, typically around the age of 15 years old, and are pressured to have children immediately. 26 Most women in Notes: a 1 = strongly agree, 2 = agree, 3 = disagree, 4 = strongly disagree; a 0 = not at all/never, 1 = slightly/rarely, 2 = moderately/sometimes, 3 = quite a bit/all the time; b 0 = not at all, 1 = slightly, 2 = moderately, 3 = quite a bit, 4 = extremely; c 0 = no, 1 = yes. our sample reported an "arranged" marriage, while a smaller number reported being "forced" to marry someone they did not want to marry. The most commonly abused substances by women entering the DAT centers were opium, crystal, hashish, and heroin. Most of the study participants had used one or more of these substances 30 days prior to treatment. Our results are similar to those reported by the United Nations Office on Drug Use and Crime, 12 which found that Afghan citizens are increasingly dependent on cannabis, opium, heroin, opioids, and tranquilizers and suffering severe mental, physical, and social problems as a result of their addiction. --- Human rights violations Half of the women in our sample experienced at least one type of human rights violation prior to entering the DAT centers. About one-third of these women experienced some form of maltreatment, including denial of food or shelter, forced to live in social isolation, forced to consume drugs, and forced to work in poppy cultivation. This is consistent with findings from similar studies that indicate "lack of food and water" is an extremely traumatic event, 9 social isolation is an ongoing problem, 7 and husbands sometimes force their wives to consume drugs to keep them from fighting back or from leaving. 13 While other research has not reported the rates of women being forced to work in poppy cultivation, news reports indicate this is a reality for some Afghan women. 27,28 About one-third of the women experienced gender-based inequality prior to entering the DAT centers, including being forbidden to go in public without a male relative, forbidden to drive a car, and denied education. These findings are not surprising given the strict enforcement of laws forbidding females to attend school or work outside the home. 3 Although the Taliban regime has ended, some maintain that women's rights have yet to be restored to pre-Taliban traditions, 16,26 and the majority of females are still not attending school. 29 Physical and sexual abuse violations had a relatively low base-rate phenomenon with a very small percentage of women reporting these types of abuse prior to entering the DAT centers. This is consistent with other reports finding this to be a rare -and likely underreported -event. 12 In an attempt to address the issue of underreporting, a 2008 United Nations Office on Drugs and Crime (UNODC) study 30 asked Afghan women whether they knew any women who were addicted to drugs and had been raped, and 54% said yes. This suggests that sexual abuse does occur among this population but that it is not reported due to stigma or shame. Alternatively, it is also possible that some women may not feel this type of behavior is a violation of their rights, but rather a tolerated behavior between husband and wife in Afghan society. 31 As evidence of this, a law was passed in 2009 permitting "marital rape" in Afghanistan. 32 --- Mental health problems Most of the women in this sample reported limited social functioning, which is likely due to the fact that women are denied rights and freedoms that would encourage social functioning, such as walking freely in public, going to school and work, and talking openly in social settings. 33 Many of the women had experienced suicide ideation before entering the centers, which is common among this population. 8 And, nearly one-third of the women (27%) had attempted suicide 30 days prior to entering the DAT centers, which is a higher percentage than those reported from a sample of Afghan women in Taliban controlled areas (16%) and non-Taliban controlled areas (9%). 8 Further, this percentage is extremely high when compared to the worldwide rate of suicide attempts. 34 --- Risk factors for human rights violations Married women were more likely to report maltreatment prior to entering the DAT centers. This is consistent with research that indicates that human rights violations among Afghan women are inflicted mostly by husbands. 3,13,35 Also, women of Pashtun ethnicity were more likely to have experienced at least one form of human rights violation prior to entering the DAT centers, which follows research that indicates that Pashtun communities still impose Taliban-like conditions where women are treated dishonorably and denied basic rights. 36 Women who reported being able to read also reported greater human rights violations prior to entering the DAT centers, which might be explained by the fact that more educated Afghan women are more aware of their basic rights and thus more likely to report violations. 37 Employed women were less likely to have experienced gender-based inequality, which is likely because women who are working outside the home have fewer social restrictions conferred upon them. Women who entered treatment because of their own desire were more likely to have experienced gender-based inequality. Because these DAT centers offered women residential treatment, women may have seen the centers as an alternative form of shelter. Women with limited social functioning were more likely to have experienced all forms of human rights violations except for gender-based inequality. Women who are mistreated and abused likely experience inadequate social functioning due to the restrictions placed on them by their spouses or family members, and possibly by the shame and terror they feel from experiencing such abuse. Although no significant relationships were found for women who had suicide ideation, women who had attempted suicide were more likely to report experiencing all forms of human rights violations. These findings emphasize that human rights violations have a severe impact on the mental health of Afghan women, and suggest that reducing such violations might also help reduce suicide attempts among these women. The results from this study related to the relationships between mental health and human rights violations are supported by Cardozo et al's research 9 that indicates the most traumatic events reported by Afghan women were related to denial of human rights, and other research that shows that women experiencing these violations also report serious mental health problems. 8 Several limitations of this study need to be addressed. First, this was not a generalizable sample of drug-addicted women in Afghanistan, but rather a purposive sample of women who entered three female DAT centers in Afghanistan, which were the only addiction services available for women at the time of this study. The majority of Afghan women live in rural areas, where little has changed for decades, and daily conditions are especially harsh in western Afghanistan. 3,35 Because the women sampled had access to treatment, it could indicate that these women had greater means, resources, or support than other drug-addicted women in Afghanistan. Second, we have very low base rates for physical and sexual abuse in the human rights violations scale. Future research with this population needs to be conducted to help us better understand the prevalence of sexual and physical abuse as well as related attitudes around this issue. Third, we had small effect sizes for our results in general. However, we still feel that these results provide a first step toward better understanding the severe impact of human rights violations on Afghan women. Finally, due to the fact that research on the denial of women's human rights in Afghanistan is in its early stages, much work needs to be done with regard to scale development. For example, there is a lack of formative work determining what Afghan women (of various ages and ethnicity) perceive as violations to their rights versus moral or cultural expectations. Qualitative research could help enrich the results reported from this study and would better our understanding of the perceptions and impact of human rights violations among Afghan women. --- Conclusions and implications This study found that women entering DAT centers had experienced a high rate of human rights violations prior to entering the centers. To be effective, DAT centers need to add services that help female patients cope with the human rights violations they have experienced. Also, services should be provided that may help prevent future human rights violations. For example, this study showed that women who were employed were less likely to have experienced human rights violations. Therefore, offering educational classes and vocational skills training may provide Afghan women with opportunities that could prevent this type of abuse. It is important that treatment programming take into consideration the cultural and contextual factors of women living in a war-torn country where denial of women's basic human rights is the norm. The study showed that female patients who reported coming to the DAT centers due to their own desire were also more likely to have experienced human rights violations prior to entering the centers. Further, patients who were married, literate, unemployed, or of Pashtun ethnicity were more likely to have experienced human rights violations. These individual characteristics should be used as a guide to identify patients at treatment entry who are most in need of special services that help women deal with human rights violations. Significant relationships between mental health problems and human rights violations were also found, including limited social functioning and suicide attempts. More emphasis should be placed on helping women in treatment cope with their experiences of human rights violations which, in turn, may strengthen their mental health. Because women in the DAT centers in this study come from rural areas with minimal professional services for them to use after residential treatment, it is important that these specialized services be provided at the DAT centers. This study found that many drug addicted women in Afghanistan who enter DAT have mental health problems. As such, many of the women in Afghan DAT programs suffer from co-occurring substance abuse and mental disorders. Understanding the importance of integrating treatment services for substance abuse and mental disorders is critical for Afghan residential DAT providers to assist their female patients in achieving effective and healthier lives. Further, despite its prevalence, few DAT programs assess, treat, or educate patients and/or staff about trauma. 38 Failure to address this issue has serious consequences, including relapse, greater violence that leads to increased substance abuse, and higher rates of depression. 39,40 Given the connection between spirituality and recovery from trauma such as the mental health problems found in this study, 41 treatment approaches that include a spiritual component offer survivors an opportunity to explore and reestablish their own personal sense of spirituality as they reflect on the lessons learned from their trauma experience. Given the prominence of the Islamic faith in Afghan culture, incorporating spirituality into the counseling regimen of Afghan women's DAT programs represents a promising practice that could assist in their recovery from addiction and trauma. In conclusion, more research about human rights violations and mental health problems among Afghan women is needed. Further, an evaluation of the recommended changes in Afghanistan DAT centers should be conducted in a larger study in order to determine the effectiveness of these services in increasing mental health and coping among Afghan women. --- Disclosure The authors report no conflicts of interest in this work. --- International Journal of Women's Health --- Publish your work in this journal Submit your manuscript here: http://www.dovepress.com/international-journal-of-womens-health-journal The International Journal of Women's Health is an international, peerreviewed open-access journal publishing original research, reports, reviews and commentaries on all aspects of women's healthcare including gynecology, obstetrics, and breast cancer. Subject areas include: Chronic conditions (migraine headaches, arthritis, osteoporosis); Endocrine and autoimmune syndromes; Sexual and reproductive health; Psychological and psychosocial conditions. The manuscript management system is completely online and includes a very quick and fair peer-review system. Visit http://www.dovepress.com/ testimonials.php to read real quotes from published authors. International Journal of Women's Health 2012:4

91b6a0e5100103d83fbe041520666b3df152537c

Health-related quality of life variations by sociodemographic factors and chronic conditions in three metropolitan cities of South Asia: the CARRS study

Objectives Health-related quality of life (HRQOL) is a key indicator of health. However, HRQOL data from representative populations in South Asia are lacking. This study aims to describe HRQOL overall, by age, gender and socioeconomic status, and examine the associations between selected chronic conditions and HRQOL in adults from three urban cities in South Asia. Methods We used data from 16 287 adults aged ≥20 years from the baseline survey of the Centre for Cardiometabolic Risk Reduction in South Asia cohort (2010-2011). HRQOL was measured using the European Quality of Life Five Dimension-Visual Analogue Scale (EQ5D-VAS), which measures health status on a scale of 0 (worst health status) to 100 (best possible health status). Results 16 284 participants completed the EQ5D-VAS. Mean age was 42.4 (±13.3) years and 52.4% were women. 14% of the respondents reported problems in mobility and pain/discomfort domains. Mean VAS score was 74 (95% CI 73.7 to 74.2). Significantly lower health status was found in elderly (64.1), women (71.6), unemployed (68.4), less educated (71.2) and low-income group (73.4). Individuals with chronic conditions reported worse health status than those without (67.4 vs 76.2): prevalence ratio, 1.8 (95% CI 1.61 to 2.04). Conclusions Our data demonstrate significantly lower HRQOL in key demographic groups and those with chronic conditions, which is consistent with previous studies. These data provide insights on inequalities in population health status, and potentially reveal unmet needs in the community to guide health policies.

InTROduCTIOn Health-related quality of life (HRQOL) is a multidimensional concept that provides a broader perspective of health through conveying an individual's ability to function in physical, mental and social domains of life. 1 HRQOL is thus an essential patient-centred outcome measure that is useful to guide health policies. 2 3 HRQOL is preferred over other health indicators (life expectancy, mortality, morbidity) for measuring chronic disease burden as it incorporates both length and quality of life. 4 In South Asia, chronic conditions (diabetes, hypertension and heart diseases) occur at an early age, 5 with detrimental effects on length and quality of life. 6 7 In addition, episodes and fear of hypoglycaemia, recurrent heart attacks, stroke and other long-term complications (kidney diseases, diabetic retinopathy) are not always measured as such, although they have a substantial adverse impact on an individual's overall health status. 8 Therefore, it is important to quantify the effect of chronic conditions on individuals' HRQOL. --- Strengths and limitations of this study ► This is the first population-level health-related quality of life (HRQOL) data from South Asia using the European Quality of Life Five Dimension-Visual Analogue Scale including three large metropolitan cities in India and Pakistan with a large sample size (16 284 adults aged ≥20 years). ► Our data provide the first baseline values to be used for monitoring population health status and analysed the relationships between selected chronic conditions and HRQOL. ► HRQOL data presented in this article could be used to complement national health targets by providing a measure of chronic disease burden based on perceived health status rather than solely on mortality and disease prevalence. ► Due to the cross-sectional nature of the data, the causal relationship between socioeconomic parameters or chronic conditions and HRQOL cannot be determined. ► Many chronic conditions (respiratory, locomotor, cancer and others) were not included in the survey. Therefore, the ranking of most severe health conditions and associated HRQOL is not complete. --- Open Access There are several disease-specific (Chronic Respiratory Distress Questionnaire, Arthritis Impact Measurement Scale) and generic instruments (Short Form 36, WHO-Quality of Life Questionnaire and the European Quality of Life Five Dimension-Visual Analogue Scale (EQ5D-VAS)) available to measure population HRQOL. 4 9-18 However, the EQ5D-VAS is favoured because it is generic, not specific to a particular disease, and it includes multidimensional measures of health profile in five dimensions (mobility, self-care, usual activities, pain/discomfort and anxiety/depression) and the single-dimensional measure VAS to summarise overall health status. 1 Also, EQ5D-VAS has been applied and validated for its use in many population surveys across the world; therefore, it makes the comparison of health status across populations easier. Data on population HRQOL across socioeconomic status (SES) from South Asia are scarce, and little is known about the relative associations between different chronic conditions and individual HRQOL. The Centre for Cardiometabolic Risk Reduction in South Asia (CARRS) study 19 had collected data on both EQ5D-VAS and selected chronic conditions from a large representative population of adults in urban South Asia. We used this opportunity to examine population HRQOL in this region. In this paper, we describe the variations in HRQOL by age, gender and SES, and explore the relationships between selected chronic conditions and HRQOL in a representative sample of adults aged ≥20 years from three metropolitan cities in India and Pakistan. We also analysed the relationship between multidimensional EQ5D measures and single-dimensional VAS across major subgroups. --- MeThOdS --- Study design and setting We obtained data from the baseline cross-sectional survey of the CARRS cohort (2010-2011), which recruited a representative sample of non-pregnant adults aged ≥20 years from three urban cities: Chennai, Delhi and Karachi. These metropolitan cities with large and heterogeneous populations in terms of demographic profile and economic transitions offer unique opportunities to assess variations in health status across different socioeconomic groups. The detailed CARRS study design has been published elsewhere. 19 Briefly, a multistage cluster random sampling strategy was used with wards (in Delhi and Chennai) or clusters (in Karachi) as the primary sampling units. Using the WHO STEPS (STEPwise approach to surveillance) survey 'Kish method', two participants, one male and one female, aged ≥20 years (non-pregnant) and meeting the study eligibility criteria, were selected from each randomly selected household. 19 --- Study measures Comprehensive and uniform data collection instruments were used to capture measurements in all three sites. A summary of all surveillance measures, methods and instruments used in the study has been published in detail. 19 Briefly, a questionnaire was administered to collect information regarding demographic, socioeconomic, behavioural, and past and present health status of the participant. Trained study staff measured anthropometric parameters (height, weight) using standardised techniques and blood pressure (BP) twice at each participant's home or at a medical camp organised in the community, after 5 min in a seated position using an electronic BP measuring device (Omron Dalian, Liaoning Sheng, China). If the difference between the first two systolic or diastolic BP readings was more than 10 mm Hg or 5 mm Hg, respectively, a third reading was taken. Average BP readings of the two/three readings were recorded in the study database. Additionally, fasting blood glucose (FBG) and glycated haemoglobin (HbA1c) were measured. The overall response rates were 94.7% for questionnaire completion and 84.3% for blood tests. Population health status was measured using the EQ5D-VAS questionnaire, which consisted of two components: health state description and self-rated health status on VAS. Health state description (profile) includes five dimensions (5D): mobility (walking ability), self-care (ability to wash or dress by oneself), usual activities (ability to work, study, housework), pain/discomfort and anxiety/depression. The respondents self-rate their level of severity for each dimension using three levels (EQ5D-3L): having no problems, having some or moderate problems, or being unable to do/having extreme problems. The respondents were asked to choose one of the statements that best described their health status on the surveyed day. For example, three levels of 'mobility' dimension were phrased as 'I have no problems in walking', 'I have some problems in walking' and 'I am confined to bed'. Given the possible permutations of different domains and response types, there are potentially 243 (=3 5 ) different health profiles. For overall health status, the respondents evaluated their health status using the VAS. The VAS asks respondents to mark health status on the day of the interview on a scale of 0 (worst health status) to 100 (best imaginable health status). --- Covariates Self-reported age at baseline in completed years was used and categorised into 20-24, 25-34, 35-44, 45-54, 55-64, 65-74 and ≥75. Based on participant responses, we categorised employment status into employed, student, housewife, retired and unemployed. Income class was grouped into three categories based on household monthly income: low-income, less than 10 000 Indian rupees (equivalent to US$200); middle-income, 10 000-20 000 Indian rupees (US$200-400); and high-income strata, greater than 20 000 Indian rupees (US$400). We categorised highest education level attained into three categories: up to primary, secondary schooling and graduates. The marital status was classified as single, married, widowed and divorced. Body Open Access mass index (kg/m 2 ) international classification of ≤17.9 was used to define underweight, 18.0-24.9=normal weight, 25.0-29.9=overweight and ≥30.0= obese. Lifestyle habits like tobacco use were classified based on self-reports as never, former and current user. Data on chronic conditions consisted of self-reported hypertension, diabetes, heart disease, stroke and kidney disease. In addition, diabetes was categorised into self-reported, newly diagnosed (defined by no self-reported diabetes and FBG of ≥126 mg/dL or HbA1c ≥6.5%), pre-diabetes (no self-reported diabetes and FBG ≥100-125 mg/dL or HbA1c ≥5.7%-6.4%) and normoglycaemia (no self-reported diabetes and FBG <100 mg/dL and HbA1c <5.7%). Similarly, we classified hypertension as self-reported, newly diagnosed (no self-reported hypertension and BP ≥140/90 mm Hg), prehypertension (no self-reported hypertension and BP 120-139/80-89 mm Hg) and normotensive (no history of hypertension and BP <120/80 mm Hg). --- ethical considerations Study participants provided written informed consent before participation in the study. --- Analysis We used Stata V.14.0 for data analysis. We used the 'svy' command for all analysis to account for the complex survey design. 20 Before any of the survey estimation commands were used, the svyset command was used to specify the variables that described the stratification, sampling weight and primary sampling unit variables. This analysis included data obtained from 16 284 study participants. All the responses coded as refused, unknown or missing were treated as missing data. The frequency (percentages) and mean were reported to display the level of population health status and the sample characteristics. Percentages of those reporting any problems in EQ5D domains and mean VAS were stratified by respondents' demographic characteristics-age, gender, marital status and SES-education, income and employment status; and health-related indicators-presence of chronic conditions-were reported. Additionally, prevalence ratios of moderate or severe health problems in people with and without chronic conditions were estimated using log binomial regression. Where the model did not reach convergence, Poisson regression model was used. The model was adjusted for sociodemographic covariates (age, gender, marital status, education level and household income) and city. Linear regression analysis was performed to explore the relationship between the VAS and the EQ5D measures across major subgroups. In the regression model, VAS was used as a dependent variable, and EQ5D measures were treated as independent variables. --- STudy ReSulTS --- Characteristics of the study population A total of 17 274 individuals in 10 002 households were approached in the three study sites (7596 participants in Chennai, 5420 in Delhi, 4258 in Karachi). From these, a total of 16 287 participants were recruited (the overall response rate was 94.3% at the participant level: 6906 Chennai (90.9%), 5364 Delhi (98.9%) and 4017 Karachi (94.3%)). Detailed baseline characteristics of the CARRS cohort are published elsewhere. [21][22][23][24] Briefly, the mean age was 42.4 (±13.3), 52.4% were female, 61% completed secondary schooling and the majority of respondents (72.5%) reported household income level <10 000 Indian rupees (US$200). Two-thirds (66%) of the study population had BMI ≥25, one-fifth (20%) of the respondents reported current tobacco use, and 37.5% had self-reported chronic conditions (hypertension, diabetes, heart disease, stroke or chronic kidney disease). --- Overall hRQOl by age and gender A total of 16 284 study participants completed the EQ5D-VAS (99.9%). Overall, the percentage of respondents reporting any problems in mobility and pain/ discomfort (14% each) was higher than for other domains. Greater health problems were observed with higher age for both men and women (p<0.001) (table 1). Problems with mobility were higher with advancing age. However, problems with anxiety/depression did not show such trend. Average health status (VAS) reported by the CARRS cohort was 74.5 (95% CI 73.7 to 74.2) (figure 1). Women reported lower health status than men (71.6 vs 79.0; p<0.001). Of the respondents 74% rated a perfect health profile with no difficulties in any EQ-5D domain, and 0.06% rated the worst health profile whereby they had difficulties with every EQ-5D domain. The distribution of the VAS scores was skewed in the direction of best-imagined health state. Only 0.5% respondents rated their health status on VAS under 10, and 10% rated it under 50 (online supplementary appendix 1). hRQOl and SeS Table 2 and Figure 2 depict the mean VAS, percentage and prevalence ratios of respondents reporting moderate or severe problems in the five dimensions, across various subgroups, respectively. Employed adults and students reported better health status than home makers, retired or unemployed participants. We observed almost equal health status in home makers and retired people. Health status was also similar in the middle-income and high-income groups, while it was significantly lower in the low-income group. Individuals with higher education (graduate and above) and high income had higher HRQOL than those with secondary or primary schooling and low-income class. Also, individuals with BMI ≥18-24 kg/m 2 reported better health status than those with BMI ≥25 kg/ m 2 . Current tobacco users reported better health status than former tobacco users or non-users. However, in a stratified analysis of HRQOL in tobacco users by presence or absence of chronic conditions, tobacco users with chronic conditions reported worse health status than non-users. Open Access hRQOl and chronic conditions Overall, individuals with chronic conditions reported lower health status than those without chronic conditions. About half of the respondents with self-reported diabetes, hypertension, stroke, heart disease or chronic kidney disease reported moderate or severe problems in all five domains (table 2). Table 3 presents the adjusted prevalence ratio of moderate or severe problems among people with versus without chronic conditions, stratified by sex and cities. Individuals with chronic conditions reported two times greater problems in mobility, usual activities domains, pain/discomfort and anxiety/depression, than in individuals without chronic conditions. Further, a small proportion of individuals with chronic conditions, mostly those with hypertension (10.5%) or diabetes (8.3%), reported having a perfect health state. --- Relationship between VAS and eQ5d measures across major subgroups We expected that each EQ5D dimension would have an independent relationship with VAS since each of them represents a different aspect of HRQOL. Online supplementary appendix 2 provides the beta coefficients of the weighted regression models (ie, with the application of the population sampling weights). In the overall population, having any problems in mobility, self-care, pain/ discomfort and anxiety/depression were associated with VAS scores that were 10-12 points lower. This inverse relationship of lower VAS with higher domain difficulties was larger in men, elderly (>60 years), low-income, less educated, divorced and high BMI individuals, compared with their respective counterparts. Tobacco users who reported difficulties in all domains of EQ5D had lower VAS scores (indicating lower quality of life). Kidney disease and stroke were the most disabling conditions on all measures. dISCuSSIOn Comparative assessments of HRQOL variations by sociodemographic factors and chronic conditions aid in prioritising public health targets for intervention. Results from this study indicate that less than 10% of the respondents rated their health status as 100 (ie, best-imagined health state) on VAS. Mobility, pain/discomfort and anxiety/ depression were the most commonly reported problems, with the extent of these problems differing across population subgroup. Elderly (>60 years) and women reported significantly greater problems in the mobility, pain/ discomfort and anxiety/depression domains. The mean VAS in our study was 74.5, which is lower than reported by most Western countries (82.5), but comparable to the results from other low-income and middle-income countries (LMIC) (71.1-77.8) (online supplementary appendix 3). [25][26][27][28] Lower health status reported by urban South Asians can be interpreted in a number of ways. The lower scores may be related --- Open Access to generally lower reporting of HRQOL among this group. Alternatively, these scores may reflect morbidity and suboptimal access to healthcare facilities to address health concerns. South Asians experience chronic conditions at relatively younger ages than other race/ethnic groups, and the associated reductions in productivity and income levels may be manifested in these self-reported EQ5D-VAS scores. A higher percentage of individuals reported problems in mobility dimension (14%-17%) in South Asia, which is comparable to results from other LMICs. 29 However, problems in anxiety/depression are pretty low in South Asia when compared with the rest of the world; this could be due to underdiagnoses of depression-related problems or stigma attached to these health conditions. These patterns could also reflect differences in how adults in different parts of the world self-rate their health. Worse health status in retired or home makers, compared with employed persons, may be related to being homebound or reflect underlying illnesses that may be the factor driving these participants to be homebound and not employed. In terms of modifiable risk factors, maintaining a healthy BMI cut-off (18-25 kg/m 2 ) is favoured because individuals with BMI <18 kg/m 2 and ≥25 kg/m 2 reported greater problems in all five domains. Although previous studies have shown that lower levels (intensity) of tobacco use are linked with higher HRQOL and regular tobacco users with worse health status, 30 31 in our study, former tobacco users reported lower HRQOL than current users. This finding may indicate reverse causality, that is, former tobacco users after experiencing an illness would have quit smoking/tobacco. Further, supported by the fact that tobacco users with chronic conditions or greater difficulties in EQ5D domains had lower VAS scores is suggestive that morbidity and not the habit of tobacco use per se is more closely related to participants' perception of health. However, a causal link between tobacco use and HRQOL cannot be confirmed in this cross-sectional study. Longitudinal analyses of the independent associations between the smoking/tobacco with HRQOL may provide a better understanding of this relationship. Notably, one in five individuals living with known hypertension or diabetes (average disease duration 4 years) still reported a perfect health state, indicating that these individuals may feel asymptomatic until they experience a clinical event. Also, very small proportions of patients with heart disease and stroke (with longer duration of illness; average 9 years) reported perfect health states, suggesting that these individuals may have adapted to their conditions over time and may be benefiting from treatment and self-care that improve their self-rated quality of life. However, we did not investigate whether these other factors like adherence influence quality of life in those living with chronic conditions. Due to the differences in statistical analyses, HRQOL measures, sociodemographic characteristics of the sample and medical conditions selected, the results of this study may not be directly comparable to reports from other countries. 32 Nevertheless, a few differences and common findings are noteworthy. Individuals with stroke or chronic kidney disease rated the lowest health status, Figure 1 Mean self-rated health status using the European Quality of Life Five Dimension-Visual Analogue Scale (EQ5D-VAS) of respondents by age groups and gender. This figure presents the mean self-rated health status for overall study population by age groups and gender. The EQ5D-VAS measures health status on a scale of 0 (worst health status) to 100 (best imaginable health status). *p Value for difference between mean EQ5D-VAS between men and women at each age group is statistically significant, p<0.01. Open Access which is consistent with results reported from other studies done in China, Thailand and Western populations. 28 33-36 Since the respondent's health status could be affected by how well the condition was managed, caution is needed in interpreting study results regarding the relative effect of chronic conditions on HRQOL. [37][38][39][40][41] A more Open Access recent Canadian study conducted by Mo et al 42 indicated a strong relationship between low Health Utility Index scores and certain chronic conditions. The authors found that arthritis/rheumatism, heart disease, hypertension, cataracts and diabetes had a negative impact on HRQOL. In the USA, Medical Expenditure Panel Survey data-based study reported that, after adjusting for sociodemographic variables, all of the selected chronic conditions were associated with lower EQ5D scores, with effects greatest for emphysema, followed by heart disease, stroke, high BP, diabetes and asthma. 43 44 Strengths and limitations of this study To our knowledge, this is the first population-level HRQOL data from South Asia using EQ5D-VAS including three large metropolitan cities in India and Pakistan with a large sample size that has used multistage cluster random sampling strategy and standardised protocols and measurement tools across sites. Our data provide the first baseline values to be used for monitoring population health status and analysed the relationships between selected chronic conditions and HRQOL. This information could be used to complement national targets by providing a measure of chronic disease burden based on perceived health status rather than solely on mortality and disease prevalence. In our secondary data analysis, EQ5D and VAS measures correlated well, which confirms the convergent and discriminate validity of the EQ5D instrument. There are several limitations to this study. First, due to the cross-sectional nature of the data, the causal relationship between socioeconomic parameters/chronic conditions and HRQOL cannot be determined and is not implied. Second, many chronic conditions (respiratory, locomotor, cancer and others) were not included in the survey. Therefore, the ranking of most severe health conditions and associated HRQOL is not complete. Third, the selected chronic conditions were self-reported, and the study investigators did not examine the accuracy of information. However, this poses less of a threat to validity because self-reporting of heart diseases, stroke and kidney diseases is pretty accurate in community surveys. [45][46][47][48] Further, hypertension and diabetes were measured in this study using standardised methods. Lastly, EQ5D data were self-reported and the variation in how individuals perceive disability varies widely. However, this should be less of a problem given the large sample size in this study. Fourth, the findings of this study may not be replicable if researchers use a different HRQOL instrument, [49][50][51][52][53][54] which can be tested in a future study. Public health relevance and policy implications HRQOL data from this study provide baseline values for monitoring variations in health for specific population groups on the basis of gender, education, employment, income, presence of chronic conditions and place of residence. These data are also relevant to assess the overall burden of physical and mental health problems that are not disease-specific. In aggregate form, such information could be used to complement national health targets by providing a measure based on health status (quality of life) rather than mortality or disease prevalence alone. Therefore, the policy makers can use the HRQOL measures and the resulting data from this study to minimise health disparities and allocate resources among competing health programme based on burden of physical or mental health problems in a specific group. 55 The lower health status reported by female, less educated, unemployed and low-income groups may indicate higher levels of stress in these groups. 17 Other potential contributing factors that are known to influence health status are living conditions, gross domestic product per capita, inequities in income distributions and access to healthcare. [56][57][58][59][60][61] Therefore, public health initiatives should focus on intersectoral approaches to address issues of education, generating more avenues for employment and improving the quality and access of primary healthcare. Lastly, the issue of 'clinical' or 'policy' relevance of the difference in EQ5D measures needs much discourse. For example, if the VAS in two groups of the population is 5 or 10 points different from each other, we cannot make a clinical judgement on how much these two groups would differ in their actual health status. These issues relate to determining a minimally significant difference/change in HRQOL and needs investigation in future studies. However, because of HRQOL sensitivity to time trends as shown in previous studies, [62][63][64] these measures are also likely to be useful in determining the effect of major population-based policies or interventions. COnCluSIOn HRQOL appears to be lower with higher age and among women in South Asia. Our data demonstrate significantly lower HRQOL in key demographic groups and those with chronic conditions, which are consistent with previous studies. These data provide insights on inequalities in population health status, and potentially reveal unmet needs in the community to guide health policies. --- Open Access significantly in the revision of the manuscript. All authors have approved the submission of this version of the manuscript. --- Open Access

6ce80e6ccfca36e2e7e975abacf56a2c491c7a97

Postpartum fertility behaviours and contraceptive use among women in rural Ghana

Background: Although most women would want to wait for more than two years before having another baby, their fertility behaviours during the first year following birth may decrease or increase the length of the birth interval. The objectives of this study were to: assess how protected postpartum women in the Mfantseman municipal were against pregnancy, based on their patterns of amenorrhoea and sexual abstinence; determine the timing of postpartum contraception in relation to amenorrhoea and sexual abstinence; and determine the predictors of postpartum contraceptive use. Methods: This was a prospective study carried out in the Mfantseman Municipality of the Central region of Ghana. Out of 1914 women attending antenatal clinic in the municipal within the study period, 1350 agreed to be part of the study to ascertain their postpartum fertility and contraceptive behaviours a year following delivery. These women were traced to their communities using telephone and house numbers provided and only 1003 of the women were finally traced and interviewed. The women were asked about their breastfeeding behaviour, postpartum sexual abstinence, duration of amenorrhoea and postpartum contraceptive use. Results: The mean age of the respondents was 29.9 ± 6.5 years; adolescents constituted the least proportion (3.3%) of the women. More than half (54.1%) of the women had Middle, Junior secondary school or Junior high school education. Most (43.3%) of the women were married by means of traditional rites and more than half (51.4%) of them were petty traders. The mean durations of breastfeeding, amenorrhoea and sexual abstinence were 6.6 ± 2. 8 months, 7.8 ± 3.8 months and 4.4 ± 3.1 months respectively, whilst mean time of first contraceptive uptake was 3. 5 ± 2.7 months postpartum. The time to first use of modern contraceptive method during the postpartum period indicates that about 50% of the women had started use of modern contraceptive methods by 2.7 months postpartum, and occured 0.6 and 3.6 months before sexual relations and resumption of menses respectively. Occupation (likelihood ratio p = 0.013), area of residence (likelihood ratio p = 0.004), mode of delivery (likelihood ratio p < 0.001), breastfeeding (p = 0.024), period since delivery (p < 0.001), preferred number of children (p < 0.001) and parity (p < 0.001) were found to be predictors of postpartum contraceptive use. Conclusion: Postpartum women in the Mfantseman municipal who did not use contraceptives or delayed in the use of contraceptives after birth were least likely to be protected against pregnancy in the post partum period, whilst those who adopted postpartum family planning were likely to be better protected because they were likely to adopt it within the first three months after birth and before the onset of sexual relations and first menses. The predictors of postpartum contraceptive use were breastfeeding pattern, occupation, parity, preferred number of children, period since delivery, place of residence and mode of delivery.

Plain English text Although most women would want to wait for more than two years before having another baby, their fertility behaviours during the first year after birth may decrease or increase the length of the birth interval. The objectives of this study were to: assess how protected postpartum women were against pregnancy, based on their patterns of amenorrhoea and sexual abstinence; determine the timing of postpartum contraception in relation to amenorrhoea and sexual abstinence; and determine the predictors of postpartum contraceptive use. This was a prospective study carried out in the Mfantseman Municipality of the Central region of Ghana. Out of 1914 women attending antenatal clinics in the municipal within the study period, 1350 agreed to be part of the study to ascertain their postpartum fertility and contraceptive behaviours a year following delivery. These women were traced to their communities using telephone and house numbers provided and only 1003 of the women were finally traced and interviewed. The women were asked about their breastfeeding behaviour, postpartum sexual abstinence, duration of amenorrhoea and postpartum contraceptive use. The mean age of the respondents was 29.9 ± 6.5 years; adolescents constituted the least proportion (3.3%) of the women. More than half (54.1%) of the women had Middle, Junior secondary school or Junior high school education. Most (43.3%) of the women were married by means of traditional rites and more than half (51.4%) of them were petty traders. The mean durations of breastfeeding, amenorrhoea and sexual abstinence were 6.6 ± 2.8 months, 7.8 ± 3.8 months and 4.4 ± 3.1 months respectively, whilst the mean time of first contraceptive uptake was 3.5 ± 2.7 months postpartum. The time to first use of modern contraceptive method during the postpartum period indicates that about 50% of the women had started use of modern contraceptive methods by 2.7 months postpartum, and occured at 0.6 and 3.6 months before sexual relations and resumption of menses respectively. Occupation (likelihood ratio p = 0.013), area of residence (likelihood ratio p = 0.004), mode of delivery (likelihood ratio p < 0.001), breastfeeding (p = 0.024), period since delivery (p < 0.001), preferred number of children (p < 0.001) and parity (p < 0.001) were found to be predictors of postpartum contraceptive use. Postpartum women in the Mfantseman municipal who did not use contraceptives or delayed in the use of contraceptives after birth were least likely to be protected against pregnancy in the postpartum period, whilst those who adopted postpartum family planning were likely to be better protected because they were likely to adopt it within the first three months after birth and before the onset of sexual relations and first menses. The predictors of postpartum contraceptive use were breastfeeding pattern, occupation, parity, preferred number of children, period since delivery, place of residence and mode of delivery. --- Background The 2006 World Health Report proposed a 2-3 year birth interval and a six month conception interval following miscarriage or abortion, because they ensured good maternal and child health outcomes [1]. Evidence exists that if couples could space their pregnancies by at least two years, up to 35% of maternal deaths and up to 13% of child mortalities could be averted [2][3][4], whilst 25% of underfive mortalities could be averted if birth intervals were at least three years [3]. Although most women would want to wait for more than two years before having another baby, their fertility behaviours during the first year following birth may decrease or increase the length of the birth interval [5]. These behaviours include breastfeeding and its influence on return of menses (postpartum amenorrhoea), return to sexual activity (postpartum sexual abstinence) and use of maternal health services. Some of these behaviours biologically reduce fertility while some affect decisions to use family planning during the postpartum period [5]. Women are not at risk of pregnancy following a birth if they are amenorrhoeic as a result of intensive exclusive breastfeeding or abstaining from sex [6]. The period of insusceptibility, which is influenced by sexual abstinence and exclusive breastfeeding, lengthens the time until the next conception. Use of contraception within this period offers extra protection against the risk of pregnancy [7]. The length and intensity of breastfeeding and the length of amenorrhea and sexual abstinence vary among women and within societies. In this respect, postpartum behaviours need to be understood in relation to the contraception behaviours of women [7] if unintended pregnancies are to be avoided. The objectives of this study were to: assess how protected postpartum women in the Mfantseman municipal were against pregnancy, based on their patterns of amenorrhoea and sexual abstinence; determine the timing of postpartum contraception in relation to amenorrhoea and sexual abstinence; and determine the predictors of postpartum contraceptive use. --- Methods --- Study area The study was carried out in the Mfantseman Municipal area of the Central Region of Ghana. This is a coastal and predominantly rural district in the southern part of Ghana. The main ethnic group is Fante. The main occupation of the people in the district are farming, fishing and trading. The area was selected because of the high levels of teen pregnancies (13.6% of all pregnancies) high abortion rates amongst the teens and very low family planning uptake which had been consistently below 10% over a three year period from 2007 to 2009 according to the 2010 annual report of the Municipal Health Directorate [8]. --- Study design and data source This was a prospective study of postpartum women who had been encountered earlier at antenatal clinic in four selected health facilities in the Mfantseman Municipal area (Saltpond hospital, Mankessim health centre, Anomabo and Biriwa health centres) where their intention to use postpartum family planning was ascertained. These women agreed to be followed up to their communities within a year following delivery to ascertain their postpartum reproductive and contraceptive behaviours. Data on duration of breastfeeding, amenorrhoea and sexual abstinence, and time of first contraceptive use, continuation or discontinuation, were obtained within one calendar year after last birth using a reproductive event sheet adapted from DHS contraceptive calendar. The data sheets captured month-by-month data on contraceptive use or non-use, continuation or discontinuation of contraception, breastfeeding patterns, sexual behaviour and menstrual resumption to cover period since last birth. The data sheets were reviewed one year postpartum at the time of interview; however, periodic contacts with the respondents were done through telephone calls, home visits and personal contacts to ensure they were capturing data consistently and to clarify any issues that may have arisen. Reasons for use, non-use and discontinuation if any, were obtained from participants at the time of the interview. Information on socio-demographic and socio-economic characteristics was also obtained. --- Sample size estimation and sampling Based on an estimated target population of 4218 (Average total number of women visiting ANC at all selected health facilities per quarter, per year from 2008 to 2010) and the assumption that 50% of pregnant women intended to adopt postpartum family planning, within a margin of error of 3%, a minimum sample size ST, was estimated as follows: For a finite population, the sample size ST, was estimated by the formula: ST = A / [1 + (A-1)/T] [9], where A is given by [Z 2 *P*(1-P)] / C 2 ; T = estimated target population; Z = Z value (1.96 for 95% confidence); P = Proportion of pregnant women who intended to adopt postpartum family planning; and C = margin of error. This implies, A = [1.96 2 (0.5) (0.5)]/0.03 2 = 1067 and ST =1067 / [1+ (1067-1)/4218] =852; (approximated to 900). To take care of defaults and late ANC registrations (each constituting 50% of computed sample size) respectively [10], the minimum sample size (ST = 900) was doubled to 1800 with an additional 10% mark-up for women who would decline to be interviewed. The estimated total sample size was 1980. Within the survey period (2nd January to 30th April 2012), each of the selected health facilities was visited during the days designated for antenatal clinic. At the selected health facilities, all antenatal registrants (pregnant women), irrespective of the period of gestation, who lived in the Mfantseman Municipal area and who were aged 15 to 49 years, were targeted to be part of the study. During the prenatal phase of the study, 1914 antenatal registrants were encountered. Sampling of these was by total enumeration technique. Each of the antenatal registrants was asked if they would wish to be followed up a year after they had delivered to find out about contraceptive use and other reproductive health behaviours. Only 71% (1359) of them agreed to be followed up after delivery. The other 29% declined follow up for religious, socio-cultural and personal reasons considering the sensitive nature of family planning within such communities. Several strategies to further reduce non-response and attrition and improve retention rates were employed in this study. These included the following: first, giving detailed explanations about the study objectives and its possible impacts on the individual, family and society and allaying any anxieties and fears about participating in the study, whilst ensuring that emotional support was on hand to deal with extreme cases; second, obtaining detailed personal information including names, telephone numbers, house addresses (where available) and detailed descriptions of directions to houses of respondents; third, providing adequate motivation for participation by ensuring that the research assistants were friendly, showed respect and courtesy to the respondents and provided adequate privacy at the environment of the interview; fourth, improving rapport between research team and respondents by making periodic contacts with the respondents who agreed to be followed up through telephone calls, home visits and personal contacts; fifth, providing learning opportunities to the research assistants by the comprehensive training given. This motivated the research assistants to engage the respondents in ways that improved rapport and encouraged participation; sixth, providing research assistants in Phase 2 additional incentives for transportation to help them access all the respondents assigned to them, especially to the remotest parts of the municipality and seventh, regular sensitization about the study carried out by the Municipal Health Directorate through their health centres, outreach points and home visits. These strategies notwithstanding, only 1003 (74%) of the 1359 who agreed to be followed up were encountered. Twenty-six percent (26%) could not be traced mainly because of poor address systems in the communities and non-functional telephone numbers. Follow up interviews were carried out from 2nd January to 30th May 2014. These were done via face-to-face and telephone interviews using home addresses and telephone numbers provided. --- Data management and analysis The data obtained were double-entered using EPI-DATA, verified and cleaned. The cleaned data were exported into STATA (version 11) for analysis. Descriptive, chi square and logistic regression statistics were carried out to describe the socio-demographic and socio-economic characteristics of respondents, determine associations between contraceptive use and breastfeeding, amenorrhoea and sexual abstinence and determine the predictors of postpartum contraceptive use, respectively. Survival analysis techniques were used to assess the time to resumption of menstrual flow, resumption of sexual activities and time to first contraceptive use. --- Results --- Socio-demographic characteristics of respondents Table 1 presents the distribution of socio-demographic characteristics of respondents in this study. The mean age of the respondents was 29.9 ± 6.5 years. Majority (73.9%) of the women were in their prime age (20-34 years) whilst adolescents constituted the least proportion (3.3%) of the women. More than half (54.1%) of the women had attained Middle, Junior secondary school (JSS) or Junior high school(JSS) education and a little above 8% (8.3%) had no formal education. The ethnic group with the highest proportion was Fante (88.7%). Christians were the majority (90.3%) religious group among the women, followed by the Muslims (7.6%). Most (43.3%) of the women had married by means of traditional rites and more than half (51.4%) of them were petty traders. --- Breastfeeding, amenorrhoea, sexual abstinence and contraceptive use postpartum The mean durations of breastfeeding, amenorrhoea and sexual abstinence were 6.6 ± 2.8 months, 7.8 ± 3.8 months and 4.4 ± 3.1 months respectively. The mean time of first contraceptive uptake following the last birth among women who had used contraceptives was 3.5 ± 2.7 months. Table 2 shows the length of breastfeeding, amenorrhoea and sexual abstinence and time of first contraceptive uptake since the last birth. Among those who breastfed, majority (71.6%) had breastfed for six months whilst majority (62.5%) had remained amenorrheic for seven months up to a year. The period of sexual abstinence among the postpartum women was relatively shorter. Majority (66.2%) had abstained for periods of one to four months following birth. Out of the 1003 postpartum women interviewed, 505 (50.3%) of them reported using contraceptives following birth, however only 422 provided correct information regarding time of contraceptive use following birth. None of these women reported any discontinuation once they started using contraceptives of their choices. The 83 women dropped had incorrect or inconsistent data or had missing information on record sheets. Nearly 66% had used contraceptives between the first and third month after birth. The most common methods used were male condoms (33.7%), injectables (30.3%) and pills (20.6%) respectively (Fig. 1). Figure 2 shows the survival curves for first sexual resumption, first menstrual resumption and first contraceptive use by ordinal postpartum month. The survival curves show that the time at which 50% of the women had resumed their menses was about 6.3 months postpartum. Also, the time that 50% of them had resumed sex was 3.3 months postpartum, which is 3 months before resumption of first menses. This implies that women who were not using any postpartum contraceptive methods for any reason could be at risk of unintended pregnancy following resumption of sexual relations, especially when the intensity of breastfeeding could not be guaranteed (Reasons for non-use have been provided in Fig. 3). The time to first use of a modern contraceptive method during postpartum period indicates that about 50% of the women had used modern contraceptive methods by 2.7 months postpartum, and occured 0.6 and 3.6 months prior to resumption of sexual relations and menses respectively. --- Predictors of postpartum contraceptive use Tables 3 and4 summarize the association between postpartum contraceptive use among women and their socio-demographic and reproductive characteristics respectively. Women's age (p < 0.001), educational level (p < 0.001), occupation (p < 0.001), area of residence (p < 0.001) and marital status (p < 0.001) were found to be associated with postpartum contraceptive use. However, ethnicity (p = 0.061) and religion (p = 0.287) of women were not associated with postpartum contraceptive use. There was an association between postpartum contraceptive use and resumption of sexual relationship (p < 0.001), amenorrhoea (p < 0.001), and breastfeeding (p < 0.001). Table 5 presents the univariate and multivariate logistic regression analyses depicting the unadjusted (OR) and adjusted odds ratios (aOR) of factors that influence contraceptive use. All the variables that were associated with postpartum contraceptive use among women (Tables 3 and4) were used to construct the univariate and the multivariate models. In the univariate logistic regression, women within the age group 35-39 years were 2.62 times more likely to use postpartum contraceptive as compared to those within the age group 15-19 years (OR = 2.62, 95% CI: 1.20-5.72, p = 0.015). Women with ages 40 years or above also had higher odds of using postpartum contraceptive as compared to adolescents (15-19 years). Women with Middle, Junior secondary school or Junior high school (OR = 1.69, 95% CI: 1.06-2.69, p = 0.028) also had increased likelihood of using postpartum contraceptive as compared with women without formal education. Civil or public servants were 48% less likely to use postpartum contraceptive as compared to fish mongers (OR = 0.52, 95% CI: 0.28-0.95, p = 0.034). Women living in Anomabo (OR = 2.69, 95% CI: 1.80-3.99, p < 0.001) and Mankessim (OR = 0.71, 95% CI: 0.51-0.99, p = Various postpartum contraceptive methods were used by the women These included oral contraceptive pills (pills), injectables, implants, male condoms, female sterilization, lactational amenorrhoea method (LAM), periodic abstinence and withdrawal method. Of all these methods, the ones that were used by most women were the male condom (33.8%), injectables (30.3%) and the oral contraceptive pills. The least used methods were the withdrawal (2.1%) and lactational amenorrhoea (2.1%) methods 0.045) had higher and lower odds respectively of using postpartum contraceptive as compared to women living in Saltpond. Moreover, women who were married through traditional rites (OR = 0.66, 95% CI: 0.47-0.92, p = 0.013), engaged (OR = 0.42, 95% CI: 0.29-0.61, p < 0.001) and were single, separated, widowed or divorced (OR = 0.47, 95% CI: 0.24-0.91, p = 0.026) were less likely to use postpartum contraceptive. Women with assisted vaginal delivery were 87% less likely to use postpartum contraceptive as compared to women who had spontaneous vaginal delivery (SVD) (OR = 0.13, 95% CI: 0.07-0.25, p < 0.001). Compared to women who had complications, those who did not have complications had decreased likelihood of using postpartum contraceptive (OR = 0.33, 95% CI: 0.33-0.65, p < 0.001). In addition, women who were not breastfeeding had two-fold of using postpartum contraceptive (OR = 2.04, 95% CI: 1.50-2.78, p < 0.001). Amenorrhoeic women were 52% less likely to use postpartum contraceptive (OR = 0.48, 95% CI: 0.32-0.72, p < 0.001). For a unit increase in the women's preferred number of children, their odds of using postpartum contraceptive increased more than two-fold (OR = 2.16, 95% CI: 1.78-2.63, p < 0.001). For a unit increase in parity, the likelihood of women using postpartum contraceptive increased by 1.9 (OR = 1.90, 95% CI: 1.71-2.10, p < 0.001). --- Multivariate regression In the multivariate logistic regression, occupation (likelihood ratio p = 0.013), area of residence (likelihood ratio p = 0.004), mode of delivery (likelihood ratio p < 0.001), breastfeeding (p = 0.024), period since delivery (p < 0.001), preferred number of children (p < 0.001) and parity (p < 0.001) were found to be predictors of postpartum contraceptive use. Women who were students (aOR = 5.00, 95% CI: 1.12-22.40, p = 0.035) had higher odds of using postpartum contraceptives. Women living in Mankessim (aOR = 0.58, 95% CI: 0.34-0.99, p = 0.049) were less likely to use postpartum contraceptives as compared with those living in Saltpond. Compared with those who had SVD, women who had assisted vaginal delivery were 80% less likely (aOR = 0.20, 95% CI: 0.06-0.70, p = 0.012) to use postpartum contraceptive, whereas women who had caesarean section had 5.12 times (aOR = 5.12, 95% CI: 2.24-11.68, p = 0.049) likelihood of using postpartum contraceptive. Women who did not breastfeed had more than double likelihood of using postpartum contraceptive (aOR The women who had not used any family planning methods within the first year after delivery gave several reasons why they had not done so. These included the fact that some got pregnant, some partners were against the idea to do family planning, some women wanted to get pregnant soon, some were not interested in family planning, whilst others thought it was too early to decide. Lack of interest in family planning (29%), too early to take a decision about family planning (19.9%) and women wanting to get pregnant soon (15%) were reasons given by most of the women = 2.16, 95% CI: 1.11-4.21, p = 0.024) compared to those who breastfed. For a unit increase in the period since delivery, the women were 0.89 times less likely to use postpartum contraceptive (aOR = 0.89, 95% CI: 0.84-0.95, p < 0.001). For a unit increase in the preferred number of children, the odds of using postpartum contraceptive increased among women (aOR = 3.95, 95% CI: 2.77-5.62, p < 0.001). For a unit increase in parity, the likelihood of women using postpartum contraceptive increased by 2.3 (aOR = 2.26, 95% CI: 1.83-2.78, p < 0.001). --- Discussion The objectives of the study were to: assess how protected postpartum women in the Mfantseman municipal were against pregnancy, based on their patterns of amenorrhoea and sexual abstinence; determine the timing of postpartum contraception in relation to amenorrhoea and sexual abstinence; and determine the predictors of postpartum contraceptive use. The intensity and duration of breastfeeding, length of amenorrhoea and sexual abstinence, individually or in combination affect women's risk of getting pregnant within the extended postpartum period and before the two-year recommended spacing period after the last birth [1], especially in the absence of contraceptive use. Traditionally, women in sub-Saharan Africa relied mainly on breastfeeding, amenorrhoea and sexual abstinence to space their births. Periods of breastfeeding for as long as two years and its attendant long duration of amenorrhoea in some settings and long periods of sexual abstinence in middle and West Africa, were the norm [11]. Increasing modernization, urbanization and social change have gradually reduced the effectiveness of these traditional birth spacing mechanisms and therefore women have increasingly been at risk of unintended pregnancies in the postpartum period [12]. The mean duration of breastfeeding among the study participants was 6.6 ± 2.8. This is greater than the mean duration of exclusive breastfeeding in Ghana of 3.9 months and less than the mean duration of any breastfeeding of 21.2 months in Ghana and 20.4 months in the central region respectively [13]. The mean duration of any breastfeeding in the municipality was about 14% lower than that of the region and was among the lowest in the region. This may be due to the increase in the use of bottle feeding (which some women consider as modern) which also increased in the country between 2008 and 2014 [13]. Postpartum protection from conception depends upon the intensity and duration of breastfeeding. In the absence of reasonably intensive breastfeeding, women are likely to ovulate before the end of the second postpartum month and hence become susceptible to pregnancy [14]. A woman is considered insusceptible if she is not exposed to the risk of pregnancy, either because she is amenorrhoeic as a result of reasonably intensive breastfeeding exclusively for the first six months or because she is abstaining from sexual intercourse following birth [13]. The median duration of amenorrhoea and sexual abstinence among the respondents were 7.8 and 4.4 months respectively. These were shorter than the median durations of amenorrhoea and sexual abstinence for central region (9.9 and 6.6 months) and Ghana (8.4 and 5.9 months) respectively [13]. The relatively shorter durations of amenorrhoea may be due to the shorter duration and lower intensity of breastfeeding among the women in the municipality. The relatively shorter durations of sexual abstinence and amenorrhoea and the lower intensity of breastfeeding may expose the women in the municipality to the risk of unintended pregnancy, especially in the absence of contraceptive use. This may explain the high rates of unintended pregnancy among pregnant women in the municipality [15]. Among the women who used contraceptives, time of initiation was earlier than initiation of sexual relations and first menses following their last birth. Mean time of initiation of [12]. The relationship observed between postpartum contraceptives use, the initiation of sexual relations and first menses in the Mfantseman municipal is not very common in sub-Saharan Africa [16][17][18]. The finding that women who adopted contraceptives did so early and prior to resumption of sexual relations and first menses is generally encouraging; however, it must be borne in mind that it does not guarantee the prevention of unintended pregnancies and adequate spacing of births, unless the methods adopted were not discontinued or unless permanent methods were adopted. In this study, the women after initiation of contraceptives did not report discontinuation within the first year postpartum. The most widely used methods adopted among the women in the Mfantseman municipal were male condoms, followed by injectables and pills. In Ghana, the most widely used methods among married women were injectables, implants and pills, whilst male condoms, pills and injectables were the most widely used among unmarried women [14]. The methods used among the women were different because there were several methods available and the women had the freedom to choose which methods were suitable for them. Among postpartum women in a study among urban slum dwellers in Nairobi, the most widely used methods were injectables and pills [12]. It is not easy to predict how early the return of ovulation and menses for a particular woman who did not breastfeed would be. However, evidence exist that women who do not breastfeed after birth usually have early return of ovulation and menses and are thus at greater risk of unintended pregnancies. Education about this fact is provided by midwives during antenatal care in Ghana and other settings. In this study women who did not breastfeed after birth were found to be more likely to use postpartum contraceptives compared to those who breastfed. This is consistent with a study in Egypt where women who exclusively breastfed were less likely to use modern methods of contraception postpartum [19]. In this study, women who underwent caesarean section were five times likely to use postpartum contraceptives compared to those who delivered via spontaneous vaginal delivery. In contrast, those who had assisted vaginal delivery were less likely to use postpartum contraceptives. The reasons for this difference are not very clear in this study setting; however it is known that women who underwent caesarean section were often inclined to use some form of postpartum contraception and preferred methods like bilateral tubal ligation, intrauterine device and injectables [20,21] in order to avoid repeat caesarean section from another pregnancy too soon. Consistent with a study in Iran [22], place of residence influences contraceptive use among postpartum. Women living in Mankessim were less likely to use postpartum contraceptives compared to those resident in Saltpond. This was unexpected in the sense that women from Mankessim had the highest awareness (83%) about postpartum contraceptives [15] yet were the least likely to use them. Myths, fear of side effects and opposition by significant others may likely influence this observation. Further inquiry may be required to ascertain these facts. The finding in this study that students were more likely than fishmongers to adopt postpartum contraceptives is encouraging in the sense that girls may need to go back to school to complete and advance their educational status in line with the Ghana Education Service's policy and also to avoid any future unintended pregnancies. High Parity has been found in several studies to be associated with contraceptive use [23][24][25]. The finding in this study is similar. Women of high parity may have satisfied the number and sex of their children and may wish to limit their births. --- Strengths and limitations of study The prospective design was appropriate for the study considering the fact that accurate timing of postpartum reproductive health events was important to establish the relationship between them and contraceptive use. Although some strategies were put in place to minimize non-response and attrition (see methodology), the rate nevertheless was still very high (wave I response rate of 97% versus wave II response rate of 51%) and lead to sampling bias, reduced generalizability of study results and increased variance of study estimates. The threat of selection bias existed, but was highly mitigated by ensuring that the data collectors explained the study objectives and their implications very well to the respondents. The study findings may not be generalizable to the national and regional populations but to coastal and predominantly rural populations within the central region and country. The absence of data on duration of family planning use, seriously limits any conclusions about pregnancy risk in the first postpartum year. Some of the data collectors abandoned the study because of inadequate remuneration. New data collectors had to be trained to continue data collection. This brought about some delays in data analysis and reporting. --- Conclusion The objectives of this study were to assess how protected postpartum women in the Mfantseman municipal were against pregnancy, based on their patterns of amenorrhoea and sexual abstinence; determine the timing of postpartum contraception in relation to amenorrhoea and sexual abstinence; and determine the predictors of postpartum contraceptive use. Postpartum women in the Mfantseman municipal who did not use contraceptives or delayed in the use of contraceptives after birth were least likely to be protected against pregnancy in the post partum period because of early initiation of postpartum sexual relations, poor intensity and relatively shorter duration of breastfeeding. Women who adopted postpartum family planning were likely to be better protected because they were likely to adopt it within the first three months after birth and before the onset of sexual relations and first menses. The predictors of postpartum contraceptive use were breastfeeding pattern, occupation, parity, preferred number of children, place of residence and mode of delivery. --- Availability of data and materials The data that supports the study has individual identifiers and researcher is reserved to provide it. --- Abbreviations FP: Family Planning; GSS: Ghana Statistical Service; PPFP: Postpartum family planning; SVD: Spontaneous vaginal dellivery; WHO: World Health Orgaization Authors' contributions SE: Conceptualized the study was involved in data collection, entry and analysis and developed the paper; CE was involved in data collection, analysis and reviewed the paper; ASB was involved in data collection, entry and analysis and reviewed the final paper. All authors read and approved the final manuscript. --- Ethics approval and consent to participate Ethical and administrative approvals were obtained from the Ethics Review Committee of the Ghana Health Service and the Municipal Health Directorate (GHS-ERC: 14/09/11). Written informed consent was obtained from each participant and witnessed. Before each interview, the aims, objectives and benefits of the study were explained to respondents; they were then allowed to ask any questions for clarifications. Once they consented, they were made to sign with a witness of their choice. Interviews were conducted in places that guaranteed maximum privacy. For individuals who could have emotional problems from interviews, a Clinical Psychologist from University of Cape Coast was recruited on stand-by to handle cases that were beyond the control of the Principal Investigator. --- Consent for publication Consent was obtained from all the participants to publish information obtained from them but without the personal identifiers. These were also witnessed accordingly. --- Competing interests The authors declare that they have no competing interests. --- Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Subjective social status and health behaviors among African Americans.

Objectives-To examine associations of the US and community subjective social status (SSS) ladders with smoking status, at-risk drinking, fruit and vegetable intake, physical activity, and body mass index among 1467 church-going African American adults from a larger cohort study.Results-The SSS-US ladder was significantly associated with fruit and vegetable consumption (p = .007) and physical activity (p = .005). The SSS-community ladder was not significantly associated with any health behaviors. Conclusions-Among this sample of African Americans, the SSS-US ladder is more predictive of some health behaviors than is the SSS-community ladder.African Americans; social status; cancer risk behavior; physical activity; fruit and vegetable intake Subjective social status (SSS), or an individual's perception of his or her relative position in the social hierarchy, has been associated with health status [eg,1,2-4] and health behaviors [eg,5-7] independent of objective socioeconomic indicators such as income, education, and employment status. It has been argued that SSS functions as a unique predictor of health-related outcomes over and above objective measures of socioeconomic status (SES) for several reasons.

social class (eg, quality of education, job prestige), allows for consideration of rarely assessed socioeconomic components (ie, wealth), includes experiences of societal inequities (eg, discrimination), and incorporates consideration of future prospects. 1,4,[8][9][10] Together, these aspects of SSS may uniquely affect health-related outcomes through their associations with the psychological and physiological variables that influence health and health-related behaviors [eg, depression and negative affect (cf. 7,11 )]. Most research on the relations of SSS with health outcomes has included the use of a single SSS scale, which asks individuals to rank their standing relative to that of others in the United States (or society in some international studies). Known as the SSS-US (or SSS-SES) ladder, directions specify the consideration of relative standing in the United States with regard to, for example, money, education, and occupation. 12 A lesser used SSS scale is the SSS-community ladder, which asks individuals to rank how they stand relative to others in their self-defined communities, without reference to SES. 12 Research indicates that respondents tend to primarily consider material wealth, occupational status, and education in providing SSS-US rankings, whereas everyday altruistic practices (eg, participation in giving activities such as volunteering or being a good neighbor) were among the highest considerations in providing SSS-community rankings. 12 Accordingly, the SSS-US ladder typically demonstrates stronger associations with objective SES indicators than does the SSS-community ladder. 5,12 For this reason, the SSS-community ladder may be particularly relevant for individuals of lower SES, who might not rate themselves highly on the SSS-US ladder, but who have important and influential roles in their communities that would elevate their SSS-community rankings. Because the referents and determinants of SSS-US and the SSS-community ladder rankings differ, so too may their associations with health outcomes and behaviors. A greater understanding of the relative associations of these ladders with health behaviors would help inform future research, aid in the identification of individuals or groups at risk for negative health outcomes, and expand our knowledge of how different dimensions of social standing affect health outcomes. The first published study that examined both ladders in their relation to health behaviors was by Ghaed and Gallo, who focused on cardiovascular risk behaviors among a sample of (largely) white women. Results indicated that higher SSS-US endorsements were significantly associated with greater consumption of fruits and vegetables in analyses adjusting for sociodemographics, but this association was not significant with the SSScommunity ladder. 5 In addition, there were no independently significant relations between either of the ladders and physical activity, body mass index (BMI), or smoking status in adjusted analyses. 5 Only a couple of papers published following the Ghaed and Gallo study used both the SSS-US and the SSS-community ladders, but with a focus on different health outcomes or nonadult populations. For example, although not the main objective, one study found that leisure-time exercise among adults was significantly and negatively correlated with the SSS-US ladder, and not associated at all with the SSS-community ladder. 13 Another study among Mexican adolescents indicated differing associations with smoking and drinking outcomes for an SSS ladder focused on comparisons with the larger Mexican society (a modified version of the SSS-US ladder) versus the SSS-community ladder. Specifically, this study found negative associations between the SSS-society ladder and smoking and drinking behaviors, but positive associations between the SSS-community ladder and smoking and drinking behaviors. 14 Together, these studies seem to suggest that the SSS-US and the SSS-community ladder are distinct from one another in their association with health behaviors, and mixed results suggest the need for additional research in this area. It is also important to note that the influence of SSS on health outcomes may not be the same among different racial/ethnic groups. For example, previous studies found that race/ ethnicity moderated relationships between SSS and sleep quality, 15 self-rated health, 2 and hypertension. 10 Specifically, one study found that the SSS-society ladder was related to greater impairment in sleep quality among Asian and African Americans, but was unrelated among whites. 15 Another found that, after accounting for the effects of objective SES, ratings on the SSS-US ladder were positively associated with self-rated health among white and Chinese American women, but not African American and Latina women. Another found that ratings on the SSS-US ladder were significantly associated with hypertension among white men and women and African American women in fully adjusted analyses, but there was no relationship between SSS and hypertension among African American men. 10 In addition, research suggests that the determinants of SSS may vary by racial/ethnic group. For example, one study found that objective SES measures were not associated with SSS-US ladder rankings as strongly among African American as among white participants. 10 Therefore, it seems important to examine the effects of SSS on health outcomes within racial/ethnic groups. To the best of our knowledge, there have been no previous studies comparing the relative associations of the ladders with multiple health behaviors among African American adults. The purpose of the current work was to address this gap in the literature. The current study examined the relative associations of the SSS-US and the SSS-community ladders with multiple health-related behaviors (ie, smoking status, at-risk drinking, fruit and vegetable intake, physical activity, and BMI) in a sample of African American adults enrolled in a church-based longitudinal cohort study. This research builds upon the Ghaed and Gallo study, which examined the relative influence of the SSS ladders on these outcomes while controlling for objective SES indicators, 5 and extends it to a large African American sample of men and women. We hypothesized that the SSS-US and the SSScommunity ladders would be associated with health-related behaviors, over and above the influence of sociodemographics, but were not more specific in our predictions given the exploratory nature of this study within an African American sample. --- METHODS --- Participants and Procedures Data were collected as part of a longitudinal cohort study designed to investigate associations of behavioral, social, and environmental factors with health behaviors among African American adults. Participants were recruited from a large mega-church in Houston, Texas. Recruitment strategies included printed and televised media within the church and inperson solicitation during church services and at a church health fair. Individuals were eligible to participate if they were ≥18 years of age, reported residence in the Houston area, had a functional telephone number, and attended church (though they were not required to be a member of the church). Participants were 1467 African Americans who were enrolled December 2008 through July 2009. Surveys were completed in person at the church. Participants were compensated with a $30 Visa debit card following survey completion. Study procedures were approved by the Institutional Review Board at The University of Texas MD Anderson Cancer Center, and informed consent was obtained from all participants. The current study reflects data from the first year of the cohort data collection (ie, baseline). --- Measures Participants viewed questionnaire items on a computer screen and entered responses into the computer using the keyboard. Sociodemographics-Sociodemographics included age, gender, partner status, total annual household income, educational level, employment status, and insurance status. Sociodemographics were treated as covariates in the analyses due to known associations with health-related behaviors. Subjective social status-SSS was measured with 2 versions of the MacArthur Scale of Subjective Social Status: the US ladder and the community ladder. 12 The SSS-US ladder presents a 10-rung ladder to represent where people stand in the United States, with higher rungs indicating higher status (ie, more money, more education, and better jobs). 12 Participants select the rung that best represents where they think they stand relative to others in the United States, resulting in a ranked indicator variable with 10 possible levels. The SSS-community ladder presents a 10-rung ladder to represent where people stand in their communities, with higher rungs indicating higher status. Participants select the rung that best represents where they think they stand relative to others in their (self-defined) community. In this study, the SSS-community ladder was administered prior to the SSS-US ladder per recommendations in the literature. 12 The SSS ladders have been used in several studies with racially/ethnically diverse participants and have demonstrated adequate reliability and validity [eg, 2,3,10,12 ]. The correlation between the SSS-US ladder and the SSS-community ladder in this sample was 0.52. Health-related behaviors-Data were collected on smoking status, at-risk drinking, fruit and vegetable intake, physical activity, and BMI. Smoking status was assessed with a single survey item resulting in classification as a current smoker (smoked ≥100 cigarettes in lifetime and currently smoke), former smoker (smoked ≥100 cigarettes in lifetime but quit), or never smoker (smoked <100 cigarettes in lifetime). At-risk drinking was assessed with the Alcohol Quantity and Frequency Questionnaire, a self-report measure of the average alcohol consumption on each day of the week over the last 30 days. 16 Males were classified as at-risk drinkers if they consumed an average of >14 drinks per week, and females were classified as at-risk drinkers if they consumed an average of >7 drinks per week. Alcohol quantity and frequency measures have been used extensively in research, 16 including among African American samples (eg, 17 ). Fruit and vegetable intake was assessed with the NCI Five-A-Day fruit and vegetable questionnaire. 18 This questionnaire yielded a continuous variable of daily fruit and vegetable servings that was highly skewed. Because of this, we chose to focus on a binary outcome whereby participants were classified as meeting recommendations for daily intake (≥5 servings of fruits and vegetables a day) or not meeting recommendations for daily intake (<5 servings of fruits and vegetables a day) in our main analyses. This measure has demonstrated adequate convergent validity with more comprehensive dietary intake measures 19,20 and has been used previously among African American church-based samples (eg, 21,22 ). Physical activity was assessed with the International Physical Activity Questionnaire -Short Format (IPAQ), which is a self-report questionnaire used to measure the amount of time spent in moderate activity, vigorous activity, and walking during the past 7 days. 23 Weekly minutes spent engaging in each type of activity were multiplied by the corresponding metabolic equivalent (MET) value, which is a metric used to quantify energy expenditure (ie, the ratio of energy expended during an activity to the energy expended during rest). 24 Then, MET minutes were summed to arrive at the total weekly MET minutes spent in physical activity. Again, the resulting data were highly skewed. Thus, we chose to classify participants as engaging in low, moderate, or high rates of physical activity during the previous week based on total weekly MET minutes, the number of days per week engaged in PA, and the amount of time spent in each type of PA for our main analyses (see guidelines for data processing and analysis of the IPAQ, 2005). The short version of the IPAQ has good test-retest reliability and acceptable criterion validity against the Computer Science Applications, Inc accelerometer. 23 Finally, BMI (kg/ m 2 ) was calculated using staff-administered height and weight measurements. Participants with a BMI 16 to <18.5 were considered underweight, those with a BMI 18.5 to <25 were considered normal, those with a BMI of 25 to 29.9 were considered overweight, and those with a BMI ≥30 were considered obese. Because the number of underweight participants (BMI=16-18.5) in the sample was very small (N=10, <1% of total sample), these individuals were combined with the normal BMI group for analysis. There were no severely underweight individuals in the sample. --- Data Analysis Participant characteristics were examined using descriptive statistics, and relations of the SSS ladders with objective SES variables were examined using Pearson and Spearman correlations. For the main analyses, a series of logistic regression models were used to examine the associations between the SSS scales and health behaviors. Models 1-4 tested the relations of the SSS-US ladder with smoking status, at-risk drinking, fruit and vegetable intake, and physical activity (respectively) controlling for sociodemographics (ie, age, gender, partner status, total annual household income, educational level, employment status, and insurance status). Model 5 tested the relations of the SSS-US ladder with BMI while controlling for sociodemographics, fruit and vegetable intake, and physical activity. Models 6-9 tested the relations of the SSS-community ladder with smoking status, at-risk drinking, fruit and vegetable intake, and physical activity (respectively) controlling for sociodemographics. Finally, Model 10 tested the relations of the SSS-community ladder with BMI while controlling for sociodemographics, fruit and vegetable intake, and physical activity. If the SSS-US and the SSS-community ladders emerged as independently predictive of the same health-related behavior, follow-up analyses were planned to examine their relative significance within a single adjusted model. Analyses were performed using Statistical Analysis Software version 9.2 (SAS Institute, Cary, NC). Significant models were checked for adherence to underlying assumptions, and no violations were found. --- RESULTS --- Participant Characteristics Participants (N=1467; 75% female) were 45 years old on average (±12.9), and slightly less than half reported being married or living with a significant other. Three quarters of participants reported an annual household income of ≥$40,000 year, with the same proportion reporting employment. Almost half of the participants had a bachelor's or advanced degree. See Table 1 for all participant characteristics. Compared with populationbased estimates of African American adults, our sample had a lower percentage of current smokers 25 and individuals meeting fruit and vegetable intake recommendations. 26 In contrast, our sample had a comparatively higher prevalence of obesity, as well as reported rates of physical activity [cf. 26 ]. --- Relations of SSS Ladders With SES The SSS-US ladder was significantly associated with total annual household income (r = . 23, p < .0001) and educational level (r = .21, p < .0001), but not employment status (r = .03, p = .28). As expected, associations of the SSS-community ladder and these variables were more attenuated than with the SSS-US ladder, though still significant in the case of income (r = .11, p < .0001) and education (r = .11, p < .0001), but not employment status (r = -.05, p = .09). --- Main Analyses The SSS-US ladder was significantly associated with fruit and vegetable intake [β = 0.13, SE=.05; χ 2 = 7.34, p = .007; OR=1.13 (95% CI=1.04-1.24)] and physical activity [β = .09, SE = .03; β 2 = 8.22; p = .004; OR=1.09 (95% CI=1.03-1.16)]. Specifically, participants with higher SSS-US endorsements were more likely to meet recommended fruit and vegetable intake guidelines and were more likely to engage in high versus low or moderate rates of physical activity. The SSS-US ladder was not significantly associated with smoking status (p = .20), at-risk drinking (p = .52), or BMI (p = .84). The SSS-community ladder was not significantly associated with smoking status (p = .21), at-risk drinking (p = .42), fruit and vegetable intake (p = .09), physical activity (p = .11), or BMI (p = .17). See Table 2 for detailed results of these models. --- Exploratory Analyses A series of exploratory analyses were conducted following the main analyses. First, we were interested in how results might differ with an alternative conceptualization of fruit and vegetable consumption. Therefore, we conducted post hoc analyses to determine associations of the ladders with the number of servings of fruits and vegetables per day (a continuous variable). A log transformation was applied to the dependent variable due to the skewness of the distribution. Such transformations reduce the spread of values in the upper range of data points and are helpful when the skewness of the data distribution represents a threat to the underlying assumption of normality necessary for planned analyses. 27 A failure to transform highly skewed data can distort associations and lead to erroneous conclusions. 28 In addition to the log transformation, regression diagnostics were performed to identify unusual and influential data points. Observations with large residual and high leverage were carefully checked and excluded from analysis (< 3% of observations). Results of these adjusted analyses indicated that both the SSS-US and the SSS-community ladders were significantly associated with the number of daily fruit and vegetable servings in this sample [SSS-US = β = .02, SE = .01, p < .001; SSS-community = β = .01, SE = .01, p = . 029]. However, when both SSS ladders were included simultaneously in an adjusted model, only the SSS-US ladder emerged as independently associated with the number of daily fruit and vegetable servings [β =.02, SE=.01, p = .007]. Next, we examined the extent to which the ladders were associated with physical activity as measured by the total minutes engaged in all levels of physical activity (a continuous variable). In this case, a square-root transformation was applied to the dependent variable due to the skewness of the distribution. Again, outlying observations were checked and removed from the database as indicated previously (in this case, <1% of observations). Results of these adjusted analyses indicated that only the SSS-US ladder was significantly associated with the total minutes of physical activity [β =.74, SE=.22, p < .001]. --- DISCUSSION This study was the first to examine the associations of the SSS-US and the SSS-community ladders with multiple health behaviors among an African American sample of adults. Results of our main analyses indicated that only the SSS-US ladder was uniquely associated with fruit and vegetable intake and physical activity over and above the influence of sociodemographics. Specifically, every 1 unit (rung) increase in the SSS-US ladder was associated with a 13% increase in the odds of meeting recommended fruit and vegetable intake guidelines and a 9% increase in the odds of being in the high (versus low or moderate) physical activity group. These findings contribute to a growing research literature linking perceived social status with health behaviors [eg, [5][6][7] ], even after accounting for the effects of income, education, and other SES variables, and extend those findings to a large African American sample of adults. Assuming that these data represent a long-term pattern of behavior, results suggest that African American individuals endorsing low social status on the US ladder may be at increased risk of incurring cancer, cardiovascular, and other diseases that are influenced by less than desirable fruit and vegetable intake and lower levels of physical activity. An additional aim of this study was to compare the associations of the SSS-US ladder versus the SSS-community ladder with health-related behaviors. The SSS-community ladder was unrelated to any of the health-related behaviors examined in our main analyses. Moreover, even though the SSS-community ladder was associated with fruit and vegetable consumption in our exploratory analyses, which treated servings as a continuous variable, it was not incrementally significant in a model that also included the SSS-US ladder. Thus, results suggest the relative value of the SSS-US ladder versus the SSS-community ladder among African Americans in the prediction of at least some health behaviors. These findings were consistent with those of a similar study conducted among (largely) white women, which found significant associations between the SSS-US ladder rankings and fruit and vegetable consumption, but no significant associations between the SSS-community ladder and fruit and vegetable consumption. 5 Our results are also consistent with recent studies finding stronger associations between health outcomes and the SSS-society ladder rankings versus other SSS scales using more proximal referents, including neighbors. 29,30 It may be that perceived social status relative to others in a community setting may be less associated with health outcomes and health-related behaviors and instead more associated with psychosocial variables, as suggested by a previous study. 5 This possibility might be explored further among an African American sample in future research. It was important to rule out that the significant associations found in this study were not influenced by residence in low SES neighborhoods, which are known to be associated with reduced access to fresh fruits and vegetables [eg, 31 ] and greater barriers to physical activity [eg, fewer physical activity resources, lower neighborhood safety 32,33 ]. In order to examine this possibility, we conducted post hoc multilevel analyses that further adjusted our significant models for area-level SES (median household income at the US Census tract level from 2000). Associations between the SSS-US ladder rankings and dietary and physical activity behaviors remained significant in these analyses (p values = .006 and .014), and area-level SES did not account for a significant amount of additional variance in the outcome (p values = .395 and .352). Thus, results suggest that the SSS-US ladder offers value added beyond objective SES measures, at both the individual and area levels, in its association with these dietary and physical activity behaviors. In addition, we also wanted to rule out any influence of depression on our results, as depressed mood may negatively affect dietary and physical activity behaviors. However, post hoc analyses that additionally controlled for participants' scores on the Center for Epidemiologic Studies Depression Scale 34 did not alter the pattern of significant results (p values < .001). Results suggest that social standing as measured by the SSS-US ladder may have an important influence on some health-related behaviors, and perhaps ultimately health outcomes among African Americans, which rivals or surpasses that of objective SES indicators. Previous research has suggested that SSS is an incremental predictor of healthrelated outcomes over and above objective measures of SES because it captures unique nuances of social class that play an important role in how individuals act and feel (eg, societal inequities related to race/ethnicity). Our results suggest that this may be the case for fruit and vegetable consumption and physical activity among African Americans. Thus, social standing might be an important component to include within conceptual models focused on the socioeconomic predictors of (at least some) health behaviors [eg, 35 ]. Results also suggest that the SSS-US ladder might be a useful single-item screener to identify at-risk African American individuals who might benefit from targeted interventions to increase fruit and vegetable consumption and physical activity. Future research should incorporate longitudinal designs to examine the effects of the SSS-US ladder on these health behaviors over time and explore the mechanisms responsible for these associations in order to inform such interventions. In this study, neither the SSS-US nor the SSS-community ladders were significantly associated with smoking status, at-risk drinking, or BMI in adjusted analyses. These results are similar to the Ghaed and Gallo study, 5 but extend findings from a largely white sample to an African American sample. Thus, it may be that perceived social standing is unrelated to these health behaviors, whether social status is measured in relation to one's community or the nation as a whole; or it may be that these behaviors are adequately assessed with traditional, objective indicators of SES and that the inclusion of SSS offers no added benefit. However, it is likely that the low base rates of these behaviors contributed to nonsignificant results in this study (eg, only 5% were at-risk drinkers, and 9% were current smokers). In addition, despite the confidentiality of the survey process, some behaviors (eg, at-risk alcohol use, smoking) may have been underreported in this church-based sample due to associated stigma among a religious population. Associations between the SSS ladders and smoking, drinking, and BMI should be explored among a more diverse population of African Americans. Limitations of this work include the cross-sectional design, which precludes assumptions of causality in the relations between SSS and health behaviors. In addition, we focused on a convenience sample of church-based African American adults from a large metropolitan city in the South. The sample was largely female and generally well educated. Thus, these results may not generalize to other populations inasmuch as those populations might differ from the one examined in this study. Finally, although we attempted to control for a number of potential confounders, it is possible that unknown and unmeasured confounders might have influenced these results. Future research should seek to include large, racially diverse samples in order to examine whether relations of SSS with health behaviors varies by race/ ethnicity. Barring adequate diversity, however, future research in this area may be best conducted within racial/ethnic groups so as to mitigate the influence of potential confounders. In summary, this study was the first to examine associations of the US and community SSS ladders with smoking status, at-risk drinking, fruit and vegetable intake, physical activity, and body mass index among an African American sample. Results support the incremental associations of the SSS-US ladder, but not the SSS-community ladder, with fruit and vegetable consumption and physical activity beyond objective SES indicators. Results suggest that the SSS-US ladder may better capture the role of social disadvantage in these health behaviors than do measures of objective SES status alone, at least among this sample of predominately female, well-educated African American church attendees. Health through MD Anderson's Cancer Center Support Grant (CA016672). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the project supporters. All logistic regression models controlled for age, gender, partner status, total annual household income, educational level, employment status, and insurance status. Models 5 and 10 additionally controlled for fruit and vegetable intake and physical activity. At-risk drinking was assessed with the Alcohol Quantity and Frequency Questionnaire. Fruit and vegetable intake was assessed with the NCI Five-A-Day Fruit and Vegetable Questionnaire. Physical activity level was assessed with the International Physical Activity Questionnaire -Short Format. Reference groups for the dependent variables are as follows: current smoker (smoking status), not at-risk drinker (at-risk drinking), not meeting daily fruit and vegetable intake recommendations (fruit and vegetable intake), low and moderate physical activity (physical activity), and obese (body mass index).

c39ce3079d2f1a1934ab730d4130232f55113b07

Parental Style and Its Association With Substance Use in Argentinean Youth

Background-In Europe and the United States, family relationships and parenting behavior can influence youth substance use, but less is known about their influence in Latin American countries. Objective-To explore whether parenting behavior is associated with substance use among Latin American youth. Methods-A cross-sectional, school-based survey of middle-school youth (n=3,172) in three Argentinian cities queried tobacco, alcohol, and drug use using items adapted from global youth surveys. Parenting behavior was assessed with previously validated items that tapped into demandingness and responsiveness, separately for mothers and fathers. Multilevel logistic regression models assessed associations between parenting behavior and substance use after adjusting for student characteristics, socioeconomic indicators, sensation seeking, and smoking amongst peers and family members. Results-Substance use prevalence was 10% for current smoking, 32% for current drinking alcohol, 17% for past 30-day binge drinking (≥5 drinks), and 8% for previous year illicit drug use (marijuana or cocaine). Greater maternal demandingness was independently associated with lower CONTACT Raúl Mejia

Introduction Youth substance use is common in Latin American countries, and Argentina is no exception (SEDRONAR, 2012;WHO, 2010WHO, , 2011)). Youth substance use results from a complex combination of socio-cultural, biological, interpersonal and socio-environmental factors (Hawkins, Catalano, & Miller, 1992;Kokkevi et al., 2007;Newcomb & Bentler, 1989). Several studies in Europe and the United States have highlighted the importance of family and parenting influences on youth substance use (Baumrind, 1991;Calafat, Garcia, Juan, Becoña, & Fernández-Hermida, 2014a;Jackson, Henriksen, Dickinson, & Levine, 1997;Piko & Balázs, 2012;Thomas, McLellan, & Perera, 2013). Parenting practices involve the grouping of attitudes and behaviors of parents towards their children. Studies examining the relationship between parenting behavior and youth outcomes have traditionally distinguished between two parenting dimensions: demandingness and responsiveness (Calafat et al, 2014a;Jackson, Henriksen, & Foshee, 1998;Piko & Balázs, 2012). Demandingness refers to parental control of children's behavior. Indicators of parental demandingness include setting and enforcing clear standards of behavior, actively monitoring and supervising a child's activities, and maintaining structure and regimen in a child's daily life (Baumrind, 1991;Becoña et al., 2013;Calafat et al., 2014a;Jackson et al., 1998). Responsiveness refers to emotional warmth of the parent, involvement in their children's lives, and acceptance and acknowledgment of the child's point of view. Indicators of parental responsiveness include communicating affection, providing comfort, and being involved in social and academic development and recognizing achievement (Baumrind, 1991;Becoña et al., 2013;Calafat et al., 2014a;Jackson et al., 1998). Low parental responsiveness has been associated with lower achievement and higher delinquency and substance use in adolescence (Becoña et al., 2013;Calafat et al., 2014b). With respect to how parenting dimensions are grouped, and whether mothers and fathers were studied, one recent meta-analysis of studies assessing parenting behavior and delinquency found that only a minority of 160 studies assessed both responsiveness and demandingness, with only 20% of these assessing parenting of both mothers and fathers (Hoeve et al., 2009). --- Parenting Behavior and Adolescent Substance Use Outcomes Authoritative parents are those who succeed in being demanding and responsive at the same time. Several studies have found that authoritative parenting is particularly important as a protective factor for adolescent substance use among European and U.S. adolescents (Benchaya et al., 2011;Becoña et al., 2013;Choquet et al., 2008;Jackson, 2002), with authoritative parents having adolescents with the lowest levels of substance and alcohol use (Jackson, Bee-Gates, & Henriksen, 1994;Jackson, 2002;Huver, Engels, Vermulst, & de Vries, 2007;Patock-Peckham, King, Morgan-Lopez, Ulloa, & Moses, 2011). However, parenting behavior and its impact on substance use may vary according to the cultural context in which parents and children interact (Lorenzo-Blanco, Bares, & Delva, 2013;Calafat et al., 2014a;Calafat et al., 2014b). Indeed, compared to non-Hispanic families in the U.S., Hispanic families have been described as adhering to collectivistic values that influence parenting practices (Romero & Ruiz, 2007;Lorenzo-Blanco et al., in press;Santisteban et al., 2012). Specifically, in research studies, collectivistic values related with more parental demandingness (Romero & Ruiz, 2007) and responsiveness (Lorenzo-Blanco et al., in press;Santisteban et al., 2012). Additionally, in studies with Hispanic adolescents, parental responsiveness appeared to be more or equally protective against substance use than authoritative parenting behavior, highlighting the need to investigate the influence of parenting on adolescent substance use across cultural contexts (Lila, Garcia, & Gracia, 2007;Villalobos, Cruz & Sánchez, 2004). In surveying studies of Hispanic youth, we identified three studies that addressed parenting and substance use in Latin American youth (Benchaya et al., 2011;Lila, Garcia, & Gracia, 2007;Lorenzo-Blanco et al., 2012). One cross-sectional study of 860 adolescents in Chile examined demandingness for mothers and fathers combined, and found a multivariate negative (protective) association with tobacco use. This study did not report other substance use outcomes (Lorenzo-Blanco et al., 2012). Another study of 230 adolescents in Colombia studied parental responsiveness for mothers and fathers separately (but not demandingness) and found a negative association between maternal but not paternal responsiveness on externalizing behaviors. This study did not measure substance use specifically (Lila, Garcia, & Gracia, 2007). Finally, a study of 231 Brazilian adolescents used an authoritative parenting measure (combining responsiveness and demandingness) for mothers and fathers separately, and found this to be negatively associated (for both fathers and mothers) with general substance and tobacco use, but not alcohol or illicit drug use (Benchaya et al., 2011). Thus, the literature on parenting behavior among Hispanic youth leaves us with an incomplete understanding of how both domains of parenting (i.e., responsiveness and demandingness) for mothers and fathers is associated with substance use outcomes among youth in South America. --- The Current Study The purpose of this cross-sectional study is to investigate Argentinian adolescents' perceptions of responsiveness and demandingness separately for mothers and fathers and their association with multiple substance use outcomes. Strengths of the study include a large sample size, which gives the power to detect significant associations among multiple parenting covariates, which could be expected to be correlated. The inconsistent findings of published studies on parenting dimensions did not permit us to propose a specific set of hypotheses across substance use outcomes. --- Methods --- Study sample and procedure A convenience sample of 33 schools from three large cities in Argentina (Buenos Aires, Córdoba, Tucumán) participated in the study (n=15, 8, 10, respectively), with public schools identified by the Ministry of Health and Ministry of Education (n=18) and private schools identified through personal contacts (n=15). Private schools were included in the sample because 26% of students attend these schools in Argentina (Bottinelli, 2013). Surveys were administered between May and July of 2014, with attempts to recruit every enrolled 8th grade student. Passive consent was requested from parents or caretakers, and students signed an active consent form, allowing for both participations in the current survey and follow-up contact for subsequent surveys. The questionnaire used anonymous link procedures to allow follow-up (Galanti et al., 2007). The research protocol was approved by an NIH-certified human subjects research board in Buenos Aires based at Centro de Educacion Medica e Investigaciones Clınicas (CEMIC). --- Development of Questionnaire Measures The questionnaire included translation of items used in surveys for adolescents previously implemented in Argentina, Mexico, and in the US (Alderete et al., 2009; Ministerio de Salud y Ambiente de la Nación, 2013; Sargent et al., 2005;Thrasher, Jackson, Arillo-Santillán, & Sargent, 2008). Items in English were translated and reviewed by Argentinean Spanishspeaking research staff and pilot tested with students in Buenos Aires to ensure students' understanding of questions, instructions and confidentiality statements. The self-administered questionnaires were completed in the classroom under the supervision of trained research staff. Questionnaires included questions about demographics, family and school characteristics, school performance, alcohol and illicit drug consumption, smoking, peer and family smoking and drinking, sensation seeking, and parenting behavior. --- Measures Substance Use Outcomes-We assessed substance use using measures commonly employed to assess these behaviors in national surveys of adolescents (Eaton et al., 2012). A respondent was considered a current smoker if he or she responded positively to "During the past 30 days, on how many days did you smoke cigarettes?". We created similar outcomes for alcohol consumption: current drinking (within the past 30days). For illicit drug use, participants were asked about life-time use of marijuana, and, separately of life-time cocaine or crack use. Participants who used either type of drug in his/her life were considered lifetime users. --- Independent Variables Parenting Behavior-Parenting behavior was assessed with questions on responsiveness and demandingness from Jackson's Authoritative Parenting Index (Jackson et al., 1998), using three items for each parenting dimension. Students used a 5-point response scale to indicate how well certain statements described the parenting behavior of their mother and father, assessed separately. The items used to assess parenting responsiveness were: "She/he makes me feel better when I am upset," "She/he listens to what I have to say" and "She/he wants to hear about my problems." For parenting demandingness, the statements were: "She/he tells me what time I have to be home," "She/he asks me what I do with my friends," and "She/he knows where I am after school". Responses from each of the items were summed and divide by the number of items to create an index (range: 1-5 for the responsiveness and demandingness) for the mother and another for the father (alpha = 0.82, 0.70, 0.89, and 0.92 for mother responsiveness, mother demandingness, father responsiveness, and father demandingness, respectively). --- Covariates We included are range of covariates found in previous studies to be predictors of adolescent substance use, and which also could be associated with parenting behaviors. The covariates included: Demographics and school function (sex, age, grade retention "Have you in your life repeated a grade in school? [yes, no]), socioeconomic indicators (has a job "Do you have a regular job for which you get paid money" [yes, no], attends public or private school, parent education "Please check the highest education that your parents have obtained [responses ranged from incompletion of primary school, to completion of a university degree]), smoking amongst network members (mother, father, siblings [family smoking assessed though a table in which students were asked to check yes if mother father or siblings smoked] or friend smoking "How many of your five best friends smoke? [0/5 to 5/5]), peer drinking [similar to peer smoking], and sensation seeking (Castrucci & Gerlach, 2006;Kilpatrick, Sutker, & Smith, 1976;Laible & Carlo, 2004;Sargent, Tanski, Stoolmiller, & Hanewinkel, 2010). Sensation seeking was measured using four items: "I like to do scary things"; "I like to explore strange places"; "I like new and exciting experiences, even if I have to break the rules"; "Sometimes I do "crazy" just for fun" (Stephenson, Hoyle, Palmgreen, & Slater, 2003), with responses on a 5-point Likert scale. Responses were summed to create an index (range: 1-5) (alpha = 0.79). --- Statistical Analysis We conducted descriptive analyses on all study variables, with all substance use outcomes treated as dichotomous variables. Bivariate relationships between continuous variables were examined using Pearson correlation coefficients. Multilevel logistic regression models (with random intercepts for school) were used to assess the associations of parenting behavior and each of the four substance use outcomes, assessed separately, providing unadjusted and adjusted estimates and confidence intervals for the odds ratios. All adjusted models included age, sex, parent education, work status and sensation seeking. The adjusted models for current smokers also adjusted for smoking by mother, father, siblings and peers. Alcohol use models were adjusted for peer alcohol use. We also ran fully adjusted models, after which we introduced an additional interaction term for sex by each of the four parenting variables, each entered separately. Overall Wald chi-square test was used to test if all the fixed effects parameters (excluding the intercept) were simultaneously zero. Missing data was less than 1% for all variables except for parental education, which was 11.9%. To control for respondent bias we imputed parental education using multinomial logistic regression (Van Buuren, 2007). Since the pattern of findings was similar in direction, strength and statistical significance for primary study variables, we present the results from the analyses that used list-wise deletion of missing cases. All data analyses were conducted by one author (AP) using Stata V.13.0 (Stata Corp, College Station, TX, USA). --- Results A total of 3826 first-year students from 33 schools in three large Argentinean cities were invited to participate. Of these, 436 (11%) were absent when the survey was implemented, 45 (1%) had parents who refused their participation, and 173 of students (4%) refused to participate. Therefore, 3172 (83%) students completed the survey. The mean age of participants was 12.8 years (SD=0.95), 42% were female, 46% of their parents had more than eight years of education, 32% attended private school, and 24% had repeated a grade in the past. Means (SD) for the parental responsiveness index was 4.22 (0.88) for mothers and 4.08 (0.91) for fathers; the means for demandingness were 3.91 (1.08) for mother and 3.66 (1.18) for fathers (Table 1). Table 2 shows bivariate correlations between parenting behavior and the covariates. As shown, demandingness and responsiveness were associated for both mothers (r=0.49, p<0.001) and fathers (r=0.62, p<0.001). A negative correlation existed between sensation seeking and mother demandingness (r=-0.18, p<0.001) and father demandingness (r=-0.14, p<0.001). Finally, a negative correlation was observed between age and mother demandingness (r=-0.12, p<0.001) and father demandingness (r=-0.11, p<0.001). Multilevel logistic regression models were estimated, regressing each of the youth substance use outcomes on parenting style and other study variables (Table 3). After adjusting for key covariates, mother demandingness was significantly associated with a decreased risk of: current smoking (AOR=0.77; 95% CI 0.64 -0.92); current drinking (AOR=0.81; 95% CI 0.71 -0.92); binge drinking (AOR=0.77; 95% CI 0.66 -0.99); and ever drug use (AOR=0.71; 95% CI 0.61-0.83). Father demandingness was significantly associated only with lower likelihood of binge drinking (AOR=0.84; 95% CI 0.74-0.97). There were no statistically significant interactions between demandingness and responsiveness indices for mother and father separately for any of the outcomes. The overall Wald chi-square test was significant for all estimated models (p < 0.0001). --- Discussion In this study of Argentinian adolescents, maternal demandingness showed an independent association with use of multiple substances, after controlling for a number of other established risk factors. Regarding the gender of the child, maternal demandingness was an important and consistent protective risk factor against use of substances for both male and female adolescents. These associations were large enough to account for a 3-8 percent reduction in the prevalence of use across the range of maternal demandingness. On the face of it, these findings add further conflict to the parenting literature in Latin American adolescents (Villalobos, Cruz & Sánchez, 2004;Lila, Garcia, & Gracia, 2007;Benchaya et al., 2011). Our results contrast with studies of authoritative parenting from Spain (Garcia & Gracia, 2009) in which responsiveness (authoritative and indulgent) seemed to be the most important domain in terms of promoting better youth outcomes there. In a subsequent editorial, Garcia & Gracia (García & Gracia, 2014) speculated that "in the South European and Latin American cultures, considered as horizontal collectivist, even if the children are very connected with their families, the relationship among different generations is expected to be more egalitarian than in vertical collectivist cultures (such as the Asian or Arabic) or individualistic (North American)". In contrast, our findings suggest that, at least for preventing onset of substance use, demandingness is an important element of parenting style, even in horizontal collectivist cultures. Among Mexican children, Villalobos (Villalobos, Cruz & Sánchez, 2004) reported a stronger association between responsiveness and multiple outcomes. On the face of it, this would be consistent with the findings of Garcia & Gracia. However, a closer look at their findings shows higher (better) scores for more responsive (authoritative and indulgent) parents on academic outcomes and lower (better) scores for more demanding (authoritative and authoritarian) parents on substance use outcomes; this finding is consistent with the results of the present study. Another study of racial/ethnic differences among US adolescents found that Hispanic children of authoritarian parents were more engaged in academic achievement, but that study did not report on substance use (Steinberg et al., 1992). Finally, a Brazilian study (Benchaya et al., 2011) used a parenting measure that combined responsiveness and demandingness so was unable to discriminate between the two. Overall, it appears that there is more support for rule setting as a parenting strategy to prevent substance use among Latino families in the Western Hemisphere, and this applies to multiple substance use outcomes in Argentina. Additionally, the evidence to date suggests that different parenting strategies may be indicated for different outcomes in Latin American adolescents. Some of the differences among studies could result the way we chose to analyze our data, using continuous values for responsiveness, independent from demandingness. We chose this approach because the data supported a dose-response relation across the continuum of each parenting dimension and we were uncomfortable with the four-typology model (Maccoby & Martin, 1983), which eliminates about half of the data by discarding adolescents who score in the middle tercile. Moreover, we felt that the authoritative construct would be verified if both responsiveness and demandingness showed an independent relation with behavioral outcomes (indeed, higher scores in both domains predicted less substance use, but the relation for responsiveness was not statistically significant). However, it is worth also noting that the correlation between responsiveness and demandingness within parent is moderately strong (0.49 for mothers and 0.62 for fathers), such that more demanding parents also tend to be more responsive on average. Once maternal parenting was accounted for, paternal demandingness was associated only with the prevention of binge drinking in this sample. These findings are consistent with other studies in which maternal demandingness had more influence on substance use than paternal demandingness (Baker et al., 1999;Garcia & Garcia, 2009;King & Chassin, 2004). The present study extends this to adolescents in Argentina. The Argentinian cities we surveyed have populations that are derived from European immigrants and emphasize many elements of this culture. It would be very interesting to see how parenting by mothers and fathers relates to substance use in Northwestern Argentina, or in countries like Bolivia, where the predominant cultural influence is more oriented toward Native Americans. Unexpectedly, the current study did not find that the effects of parenting were any different for boys compared to girls. This finding is interesting in light of the evidence that adolescent relationships with fathers and mothers may vary depending on the gender of the adolescent (Choquet et al., 2008;Patock-Peckham et al., 2011;Scalese et al., 2014). This finding also bodes well for the development of interventions, because it suggests that a focus on the mother would be effective regardless of the gender of the child. An interesting area of research for interventions could be research to determine whether training aimed at fathers could allow them to be influential over-and-above the effects of maternal parenting, or how important consistency in behavior across parent matters with respect to adolescent substance use outcomes. Although in Latin America, the family centered in the patriarchal authority is less common than previously (Burin & Meler, 1998), women still play a central role in raising early adolescents and have a better insight of and control over daily activities as compared to fathers (Ackard et al., 2006). In addition, maternal parenting dimensions may be more likely in predicting adolescent outcomes because mothers typically spend more time with their adolescents (Larson, Richards, & Perry-Jenkins, 1994). This study has several limitations which should be acknowledged. As mentioned above, the sample may not be representative of the entire Argentinean youth population, especially compared to cities in the Northwest part to the country, where the Native American culture predominates. However, the schools were selected from three main cities that represent 37% of the population and we included schools with students from different economic backgrounds. The prevalence of tobacco, alcohol and drug use in the sample is similar to the prevalence reported from national surveys carried out by the government (SEDRONAR, 2012), suggesting that the results may be broadly generalizable to urban Argentinean populations. The present study did not assess parental and sibling drinking which can influence adolescent alcohol use, and future research on the role of parenting behavior on alcohol use among youth in Argentina should assess parental and sibling drinking and drug use. In addition, although parenting behavior was not the primary focus of the survey, the questions we used have been used in many studies on youth substance use (Dalton, Ahrens, Sargent, Mott, & Beach, 2002;Sargent et al., 2004). Besides, the questions regarding parenting behavior have not been validated in the Argentinean population. However, the questions were determined to be face valid by experts in tobacco research in Argentina, had acceptable reliability (see Methods section), and have been used in a Chilean study (Lorenzo-Blanco et al., 2012). Nevertheless, the skewed nature of the responses suggests that further measurement development may be necessary to better capture variability in parenting behavior in the Argentine context. Such efforts may benefit from including a gender perspective that more completely captures the complex relationship between parenting behavior and substance use in young adolescents. Finally, this is a cross-sectional study, therefore, we cannot provide information on the temporal sequence of events, and longitudinal research may be necessary to confirm our results. In summary, the current study contributes to the Latin American literature because it is the first to assess the impact of parenting behavior on the substance use behaviors of early adolescents in Argentina. This study suggests that there is a protective association between maternal demandingness and adolescent tobacco, alcohol and illicit drug use. The findings from this study could inform the development of public policies aimed at preventing substance abuse among Argentinean adolescents. Interventions may target the mother-teen relationship as a foundation for change and research may benefit from investigating whether involving consistent support from fathers could increase the beneficial impact of the motherteen relationship. Relationship between mother demandingness index and predicted probabilities of current smoking, current drinking and drugs use, adjusted by age, sex, parent education, work status and sensation seeking. Current smoker model adjusts also for mother, father, siblings & peer smoking. Drinker models adjust for peer alcohol use. --- Unadjusted and adjusted associations between parenting behavior and youth substance use outcomes.

51b6d762d585ee4ad212b43e94d4bde72455bea0

Smoking cessation intervention delivered by social service organisations for a diverse population of Australian disadvantaged smokers: A pragmatic randomised controlled trial.

Objectives: There remains a need to identify effective smoking cessation interventions in severely disadvantaged populations. This trial aimed to examine the effectiveness of an intervention (Call it Quits) developed to promote smoking cessation and delivered by community social service case-workers. Methods: Call it Quits was a pragmatic, parallel randomised trial of a case-worker delivered smoking cessation intervention conducted in a non-government community social service organisation in New South Wales (NSW), Australia. Adult smokers requiring financial assistance were randomly assigned to the five-session Call it Quits intervention or usual care control group. Of the 618 eligible individuals, 300 were randomised to the intervention group, of whom 187 (62%) consented and 318 were randomised to the control group, of whom 244 (77%) consented, resulting in 431 participants. The primary outcome measure was self-reported continuous abstinence up to 6-month follow-up with biochemical verification. Primary analysis was performed using all the available data from participants under the assumption the data is missing completely at random , followed by sensitivity analyses. Results: No statistically significant differences in the primary outcome were found (1.4% in the control group versus 1.0% in the intervention group, OR=0.77, p=0.828). Conclusions: A multi-component smoking cessation intervention delivering motivational interviewing-based counselling and free NRT by a trained case-worker within a community social service setting was not effective at achieving abstinence in a highly disadvantaged sample of smokers but increased attempts to stop and led to a reduction in number of cigarettes smoked daily.

A C C E P T E D M A N U S C R I P T Page 5 --- Highlights  First smoking cessation trial in a community based social service setting  Participants were socioeconomically disadvantaged smokers with comorbidity  Case-worker delivered intervention were not effective at aiding abstinence  Important gains were made in reductions in cigarettes smoked and quit attempts. --- Introduction In high-income countries, tobacco smoking rates are highest amongst people with mental illness and substance use disorders, the long term unemployed and homeless populations, and Indigenous peoples. 1 Rates of tobacco-related diseases such as cardiovascular disease, cancer and chronic respiratory diseases are subsequently much higher in these groups. 2 Smokers from these disadvantaged, low socioeconomic groups find it harder to quit than more socioeconomically advantaged smokers. 1,3 Existing evidence for the effectiveness of smoking cessation interventions for disadvantaged groups is inconsistent and inconclusive. Two systematic reviews of smoking cessation interventions for six disadvantaged groups known to have high smoking rates in high-income countries suggest that multicomponent interventions incorporating behavioural counselling either face-to-face or via telephone, motivational interviewing, and NRT hold the greatest promise of successfully achieving abstinence amongst some disadvantaged groups but not all. 4,5 Delivering comprehensive smoking cessation interventions to smokers who experience disadvantage is challenging as these smokers are often hard-to-reach and as a result sample sizes are small. [4][5][6] In high-income countries including the UK, US and Australia, community social service organisations (CSSO) provide support to the most socially disadvantaged groups 7 with high smoking rates. 8 Small pilot smoking cessation trials suggest that the CSSO setting might be acceptable and feasible, 8,9 however, the effectiveness of this approach has not been evaluated in an adequately powered trial. --- Objectives The primary aim of this study was to examine the effectiveness of a CSSO case-worker delivered intervention (Call it Quits) for a diverse population of severely disadvantaged smokers on verified continuous abstinence at six month follow-up. --- ACCEPTED MANUSCRIPT --- A C C E P T E D M A N U S C R I P T --- Methods --- Study design and setting: Call it Quits was a parallel randomised trial of a case-worker delivered smoking cessation intervention. 10 The study was conducted in a large Community Care Centre, managed by a national non-government organisation located in New South Wales (NSW) Australia providing counselling, emergency housing and financial aid. Participants: Participants were adult clients of the Community Care Centre, who selfreported smoking daily or occasionally, with sufficient English language to give informed consent. Clients who presented to the centre in an inebriated or agitated state or were too distressed (distress related to factors contributing to accessing emergency relief) to participate were excluded. As clients arrived at the Centre, eligibility was assessed by a research assistant who obtained written consent. First, the research assistant asked participants to complete a general health survey on a touchscreen laptop computer. Second, participants who reported smoking tobacco daily or occasionally were asked by the research assistant to participate in a study where they may or may not receive a smoking cessation program requiring them to return to the Centre. Participant sociodemographic and smoking characteristics were collected during the computer-administered general health survey (Supplementary File 1). --- Randomisation and masking: A computer generated randomisation schedule which was embedded into the computer survey software allocated trial participants in a 1:1 ratio to intervention or control group. The randomisation schedule was developed by an independent computer programmer, incorporated into the Digivey survey software, 11 and tested prior to the trial commencing. At enrolment, the sequence was concealed from the research assistant who gained consent into the trial and conducted follow-up assessments. Participants were A C C E P T E D M A N U S C R I P T Page 8 made aware of their group following allocation with a paper print-out after they completed the computer survey. --- Interventions: All participants received on-screen advice to quit smoking, the state Quitline telephone number, and a "gift bag" with Call it Quits branded gifts. All participants were asked to return to the centre at 1 month and 6 month follow-up for data collection. No further intervention was offered to control group participants. The smoking cessation intervention which was drawn from existing evidence, the PRIME theory of motivation, 12 and the taxonomy of Behaviour Change Techniques (BCTs), 13 used brief advice and motivational interviewing techniques to encourage setting a quit date and maximise use of NRT, 14 and provide social support. 15 Free NRT was offered to all participants in the intervention group. Combination use of fast acting and sustained release NRT was encouraged based on evidence of increased effectiveness compared with single NRT type use. 14 The schedule of counselling sessions for intervention delivery included three face-to-face sessions and two telephone sessions. The counselling sessions were delivered by trained volunteer case-workers to mirror usual counselling practice at the Centre. and followed a written intervention manual (Supplementary File 2) which incorporated 46 BCTs. The emphasis was on setting a quit date, encouraging use of NRT, managing withdrawal symptoms and urges to smoke, enhancing self-efficacy, social support and prevention of relapse. Evidence-based strategies were employed to minimise attrition 6 including collection of comprehensive contact information for the participant and a significant other, flexible scheduling of follow-up assessments with reminder text messages and calls, and project branded gift bags. All participants received up to $120AUD grocery voucher for completion of the surveys. --- ACCEPTED MANUSCRIPT --- A C C E P T E D M A N U S C R I P T months follow-up, with abstinence defined according to the Russell Standard (modifiedregarding treatment of missing cases, see below). 16 Prior to un-blinding and data analysis, this was changed from the original protocol outcomes of 24-hour CO verified self-reported abstinence and 7-day point prevalence self-reported abstinence based on recommendations that six months continuous abstinence is the more relevant outcome for evaluating longerterm cessation and health impacts. 17 At the same time the 12 month follow-up was abandoned due to concerns regarding attrition and resourcing. To be classified as abstinent, participants had to report that they had smoked fewer than five cigarettes in each of the previous six months, from two weeks after the baseline (grace period) at the six-month follow-up visit and that they had not smoked any cigarettes in the week before the follow-up visit. As explained in the protocol paper, 10 although cotinine is the recommended gold standard measure for the verification of smoking status, it was impractical and invasive in this study and abstinence was verified by the concentration of exhaled CO of less than 10 ppm. 18 All participants were asked to return to the centre to provide a CO reading, regardless of whether they reported abstinence. Secondary outcomes were self-reported continuous abstinence at 1 month follow-up, and at both 1 month and 6 month follow-up self-reported and verified 7 day point prevalence abstinence, cigarettes smoked per day, and number of serious attempts to quit in the last month. To assess adherence to the intervention, participation in face-to-face and telephone sessions was recorded by counselling case-workers and participants were asked about use of NRT. Audio-recordings of 67 counselling sessions were coded for manual-specified BCT delivery. blinding (available upon request). Primary analysis was performed using all the available data from participants under the assumption the data is missing completely at random , followed by a range of sensitivity analyses to investigate the impact of departures from the missing data assumptions. 19 As recommended by the CONSORT statement, statistical analyses were conducted on all primary and secondary outcomes, and not on baseline data. The primary outcome measure -continuous abstinence from baseline (with a two week grace period)requires that participants be abstinent at both one month and six month follow-up. 16 Thus participants who are missing outcome data at six months, but are followed up at one month and are not abstainers at this time are by definition not continuous abstainers at six months and were classified as such in the analyses. All other participants with missing outcome data were excluded from the primary analysis. The primary analysis of CO verified continued abstinence from baseline involved a logistic regression model of all available observations (according to the definition above). SAS 9.4 and Stata 13 were used for all analyses, and statistical significance was defined a priori as p<0.05. Due to the very small number of participants with the outcome, we did not adjust for the a priori covariates (age, gender, marital status, housing status, income, education, postcode, nicotine dependence, quit attempts, use of cessation aids, partner smoking behaviour depression and financial stress) specified for inclusion in the analyses. 10,20 Part way through the study recruitment we discovered a breach in protocol in that some participants were informed of their allocated intervention group prior to obtaining consent. This problem was rectified after 25 participants had been recruited, and blinding to allocation was maintained prior to seeking consent for the remainder of recruitment. However, due to the potential for this to introduce some participation bias, the regression model for the --- A C C E P T E D M A N U S C R I P T Page 11 primary analysis initially included a variable indicating whether individuals had been informed of their intervention status prior to consent. As this variable had no impact on the intervention effect, to preserve power it was excluded from the final model. For the secondary outcomes a logistic regression model for abstinence outcomes was used (validated continuous abstinence at 1 month, self-reported continuous abstinence, CO confirmed and self-reported 7-day point prevalence abstinence at one and six months), unadjusted for covariates. Linear regression models were used for the number of cigarettes smoked per day, and a negative binomial model for number of quit attempts adjusted for whether or not participants had been informed of their intervention status prior to consent, Heaviness of Smoking Index, depression and anxiety (PHQ4), and self-efficacy, and for number of cigarettes, quit method at baseline was included as a covariate due to possible imbalance between treatment groups at baseline. Robust standard errors were applied to the linear regression to account for slight deviation in the heteroscedasticity of residuals. For all outcomes, three types of sensitivity analyses were undertaken to include all participants, consistent with the intention-to-treat (ITT) principle: 1) multiple imputation (MI) 21,22 with chained equations to allow for appropriate estimates of variance; 2) analysis considering individuals with missing outcome as worst case outcomes (not continuous abstainers, no change in number of cigarettes smoked and no quit attempts), consistent with common methods of analysis of smoking cessation trials; 16 and 3) using pattern mixture models (PMM), 23 consistent with a Missing Not at Random mechanism. Based on previous pilot studies with similar populations, 24 we estimated that the control group quit rate would be 5%. On the basis that an 8% absolute difference in abstinence would be clinically important (i.e., 13% vs 5%), we calculated that a study size of 400 participants A C C E P T E D M A N U S C R I P T Page 12 (200 per group), allowing for a 30% loss to follow-up, would have 80% chance of detecting this difference with a 5% (two-sided) significance level. --- Results Figure 1 shows the recruitment and follow-up of participants from 7 The control group had a higher completed follow-up rate (return for both 1 and 6 month follow-up visits) than the intervention group. --- Figure 1. CONSORT Flow diagram Treatment groups were well balanced with respect to baseline characteristics, with the possible exceptions of fewer participants in the control group who were separated/divorced (Table 1), or last tried to quit smoking by gradually cutting down on cigarettes (Table 2). Figure 2 shows no statistically significant difference between intervention groups in the primary outcome of verified continuous abstinence at six months follow-up (1.4% and 1.0% for intervention and control groups; OR 0.77, 95% CI 0.07-8.53, p=0.828). There were also no statistically significant differences between groups in the secondary outcomes at six months of self-reported continuous abstinence, verified 7-day point prevalence abstinence, and self-reported 7-day point prevalence abstinence. Participants in follow-up. Lack of follow-up was predominantly monotone with 5.6% returning for six month follow-up not having attended one month follow-up. Age was associated with being missing only in the intervention group (younger in missing: mean 34 years, SD 10 than present: mean 41 years, SD 12; p < 0.001) and income was associated with being missing only in the control group (lower income in missing than present, p=0.035). --- ACCEPTED MANUSCRIPT --- A C C E P T E D M A N U S C R I P T Sensitivity analyses (MI, worst case and PMM) showed similar results to the available case analysis for the majority of outcomes indicating the results were robust to the treatment of missing data. Estimates of the intervention effect for number of cigarettes smoked per day at 6 months varied between analysis approaches: under worst case the effect had diminished but was still significant (a difference of 2 cigarettes per day, p=0.02; and for MI we estimated a non-significant difference of 3 cigarettes per day (p=0.12). Pattern mixture modelling estimated a nullified treatment effect occurred if the missing participants were smoking at least 16 cigarettes a day more than those without missing data (an unlikely scenario). --- Intervention adherence: Of those randomised to the intervention group (n=187), 43 (23%) did not attend any counselling sessions. Of those who did attend, 22 (15%) attended one session, 30 (21%) attended two sessions, 22 (15%) attended three sessions, 25 (17%) attended four sessions and 45 (31%) attended all five sessions. Based on the audio-recording of 67 counselling sessions, the face-to-face sessions (sessions 1-3) averaged 18.09 minutes in length (range = 7.16 -46.44 minutes) and the average length of phone sessions (sessions 4-5) was 5.88 minutes (range = 1.53 -14.53 minutes). In total, 128 intervention group participants accepted an offer of NRT. Analysis of 67 counselling session audio-recordings show that, on average, fidelity to the treatment manual varied from 46% in the initial sessions, 31% in second face to face sessions and 39% in telephone follow ups. --- ACCEPTED MANUSCRIPT --- A C C E P T E D M A N U S C R I P T Discussion --- Principal findings A smoking cessation intervention incorporating behavioural counselling with the option of NRT delivered to highly disadvantaged smokers through a community social service by trained case-workers resulted in no higher abstinence rates than no intervention. Abstinence rates at six months follow-up were low for both groups. Participants in the intervention group reported more quit attempts and fewer cigarettes smoked at both one and six month followup. This trial is similar to previous trials with homogeneous groups of disadvantaged smokers (such as people with a mental illness, Indigenous Australians and prisoners) which have found low cessation rates and null outcomes for the behavioural and pharmacotherapy interventions. 4,5 The body of evidence emerging implies that these smokers find it difficult to quit, even when provided with current best practice smoking cessation aids. 4,5 The current intervention was evidence based with brief advice, behavioural counselling and BCTs, offer of combination NRT, social support and follow-up. One obvious explanation for the lack of effect may be low adherence to the intervention. The process measures collected suggest that only about a third of smokers attended all five counselling sessions and almost a quarter did not attend any at all. Not all participants in the intervention group took up the offer of free NRT (128 of 187), and of those who did take up the offer, many did not persist with the full recommended course. The outcomes suggest that more effort at increasing adherence to treatment is required. Contingency management, with even small financial and non-financial rewards for attendance to counselling sessions and adherence to treatment, is an approach with evidence of effectiveness with samples of people who use substances. 25 best practice for the general population of smokers, it may be insufficient to address the complex needs of smokers from highly disadvantaged groups experiencing comorbidities. There are a number of modifications that could be made to the intervention to strengthen it. Firstly, the provision of brief advice and motivational interviewing across five counselling sessions by minimally trained volunteers appears not to be effective for this group of smokers. Other research since this trial has shown that smokers receiving support in specialist stop smoking centres tend to have a higher short-term quit rate, compared with those receiving support in other settings from professionals for whom smoking cessation is only a part of their work. 26 The current sample reported high scores for anxiety, depression, healthrisk alcohol use and financial stress. Referring disadvantaged smokers to more qualified counsellors with experience in managing comorbidities is likely to strengthen the behavioural component of the intervention. Secondly, it is likely that the intervention would be substantially strengthened through the use of best-practice NRT, with or without other forms of pharmacotherapy for smoking cessation. For example, Cochrane reviews have shown that varenicline and bupropion result in higher cessation rates than NRT alone 27 and are safe for people with mental illness. 28 Furthermore, there are recent suggestions that for smokers who can't quit or who don't want to quit, the harm of tobacco can be substantially reduced by switching to alternative vaporised forms of nicotine delivery. 29 This is an area that deserves more attention for heavy smokers in disadvantaged groups who have tried quitting using other cessation treatments and have failed. Finally, lack of secure housing, employment, and high prevalence of Indigenous status were also characteristics of the sample. Smoking behaviours are part of the social, cultural and improving the material and social capital of groups in our society who are disadvantaged is likely to lead to improvement in health behaviours such as smoking. The CSSO setting that this trial used is an ideal vehicle for approaching this issue, however greater investment by government in providing other forms of support to these smokers is likely to improve their chances in quitting smoking and leading healthier lives. This trial recruited all smokers regardless of motivation level. The study found a significant increase in quit attempts due to the intervention. Furthermore, the intervention resulted in fewer cigarettes smoked over the six-month follow-up period, again implying that the intervention encouraged some action, which was insufficient in itself to achieve longer term cessation. Testing interventions that are applied for longer and with prolonged use of pharmacotherapy support is warranted. --- Strengths and weaknesses The most significant limitations relate to participant consent and attrition. While 49% of participants were randomly allocated to the intervention group (n=300) and 51% to the control group (n=318), a higher proportion consented in the control group (n=244; 77%) than the intervention group (n=187; 62%). The recruitment procedure involved assessing individuals' smoking status during the health survey was completed on a touchscreen laptop computer; all individuals who reported being current smokers were randomised by the software to either intervention group or control group and consent for participation in the study was then sought. The study protocol specified that consent was sought by the research assistant prior to checking the allocation of the individual. However, due to a breach in protocol, the first 25 participants were made aware of their allocation prior to consent-be required to return to the centre for three face-to-face counselling sessions if randomised to the intervention group may have been a disincentive for some. For the remainder of the recruitment, the research assistant and participants were blinded to allocation prior to obtaining consent. The impact of the lack of blinding of allocation for the initial participants had some impact on the group numbers, which was exacerbated by more participants in the intervention group withdrawing consent following allocation to group. The possible bias is likely to be small as baseline characteristics were similar between the two intervention groups. The attrition rates were high but not unusual for studies of this type 11 and were reasonably similar for the two intervention groups, 47% in the intervention group and 41% in the control group at 6 month follow-up. The imbalance in numbers highlights the difficulties in recruiting smokers in disadvantaged groups into smoking cessation trials. Evidence-based strategies were employed to boost retention, and attrition may have been greater had these strategies not been used. The consistency in the results from primary and sensitivity analysis to account for missing data points provide confidence that the impact of attrition is minimal. Also, the generalisability of the study is limited to similar CSSOs within high-income countries and their clients. The study has a number of strengths. This trial is one of the first to include a large and diverse sample of highly disadvantaged smokers, recruiting 431 participants, regardless of motivation to quit. Abstinence was verified using carbon monoxide readings. Self-reported abstinence rates were higher than confirmed abstinence, particularly in the intervention group highlighting the importance of objective verification of abstinence self-report. Our sensitivity analysis used multiple imputation as described in the methods in addition to traditional approaches to missing data in smoking cessation studies because evidence shows that the assumptions underpinning multiple imputation are more defensible than are those assumed when using other approaches to missing data. The results of the sensitivity analyses were consistent with the primary analyses indicating robustness of these analyses. --- Implications from this research New smoking cessation interventions for smokers from socially disadvantaged groups need to be developed and tested. The current study was conducted in the context of a high-income country with strong tobacco control measures and low general population smoking prevalence rate. Smokers who are highly socially disadvantaged appear to require more intensive smoking cessation interventions and possibly longer term, than smokers from the general population or more affluent groups. This has implications for resourcing and timeframes. Referral to specialist services or additional training for counsellors and care providers may be appropriate. Furthermore, new stop smoking medicines have become more readily available since this trial, including varenicline which has strong evidence of effectiveness and should be offered to smokers from disadvantaged groups. --- Conclusions In this study, evidence that a case-worker delivered smoking cessation intervention was effective at aiding abstinence was lacking. The secondary outcomes suggest that the intervention influenced processes towards abstinence such as increasing the number of attempts to quit and reducing the number of cigarettes smoked daily. For this population of highly disadvantaged smokers, with comorbidities, high proportion of Indigenous Australians and financial concerns, these are important outcomes. Because of the exceptionally high smoking rates amongst socially disadvantaged groups worldwide it is imperative that research continues to examine strategies for promoting smoking cessation. --- Acknowledgements --- ACCEPTED MANUSCRIPT --- Data statement De-identified data can be obtained from the corresponding author upon request. --- Contributors BB, CP, CD'E, RW, MS conceived and designed the study. LT implemented the study and collected the data. CD'E, CO, KP conducted data analysis. BB wrote the first draft of the article and affirms that the manuscript is an honest, accurate, and transparent account of the study reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned have been explained. All authors met the criteria for authorship, had full access to all of the data (including statistical reports and tables) in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. --- Ethics approval Human research ethics approval was gained from the University of Newcastle Human Research Ethics Committee (HREC-2010-1002). --- Conflict of interests BB has received Investigator Initiated Research grants from Pfizer and Boehringer Ingelheim.

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Knowledge, health beliefs and attitudes towards dementia and dementia risk reduction among descendants of people with dementia: a qualitative study using focus group discussions

Background: Individuals with a parental family history of dementia have an increased risk of developing dementia because they share their genes as well as their psychosocial behaviour. Due to this increased risk and their experience with dementia, they may be particularly eager to receive information regarding dementia risk reduction (DRR). This study evaluated the knowledge, beliefs and attitudes towards dementia and DRR among descendants of people with dementia. Method: Using a semi-structured topic guide, three focus group discussions were conducted consisting of 12 female (80%) and 3 male (20%) descendants of people with dementia with a mean (± SD) age of 48.8 (± 12) years. Focus group discussions were audio recorded and transcribed. Each transcript was analysed thoroughly, and where appropriate, a code was generated and assigned by two researchers independently. Then, similar codes were grouped together and categorized into themes. Results: The items in the topic guide could only be addressed after participants had been given the opportunity to share their experiences of having a parent with dementia. Participants were unaware or uncertain about the possibility of reducing the risk of developing dementia and therefore hesitant to assess their dementia risk without treatment options in sight. Moreover, participants indicated that their general practitioner only gave some information on heritability, not on DRR. Although participants identified a large number of modifiable risk factors as a group during the group discussions, they were eager to receive more information on dementia and DRR. In the end, participants adopted a more positive attitude towards a DRR programme and provided suggestions for the development of future DRR programmes.

Background Dementia is an age-related multifactorial disorder, and a growing body of evidence reveals that the risk of developing dementia later in life is determined by the cooccurrence of non-modifiable risk factors (e.g., apolipoprotein e4, family history) and modifiable risk factors across one's lifespan [1][2][3]. Over the last decade, evidence of modifiable risk factors for dementia has been mounting [1][2][3]. The Lancet Commission on Dementia Prevention, Intervention and Care demonstrated that 40% of dementia cases are attributable to twelve modifiable risk factors (i.e., less education, hearing loss, midlife hypertension, midlife obesity, smoking, depression, physical inactivity, diabetes, low social contact, excessive alcohol consumption, traumatic brain injury, and air pollution) [3][4][5]. Nevertheless, it is a challenge to enable individuals to change their health behaviour to tackle modifiable risk factors. Several behaviour change theories explain the determinants of health behaviour change, of which the health belief model (HBM) is believed to be the best suited model for dementia risk reduction [6][7][8]. Nonetheless, there is a consensus on four major constructs to measure the motivation to change one's lifestyle and health behaviours, including 1) knowledge of the disease and its risk factors; 2) perceived severity of the disease; 3) perceived susceptibility of the disease; and 4) motivation, including perceived benefits or barriers to performing risk-reducing behaviour [6,8]. Given that descendants of people with dementia have experience with dementia, they might be particularly eager to receive information and obtain more knowledge regarding dementia risk reduction. Moreover, descendants of people with dementia might be receptive to adopting a healthier lifestyle to reduce their dementia risk. A recently updated review by Cations et al. (2018) summarized the evidence of previous surveys on the knowledge of dementia and dementia risk reduction [9,10]. The included studies were conducted in the general population in Europe, the US, Eastern Asia, Israel, and Australia and found that knowledge about the opportunity for dementia risk reduction is poor but may be improving over time [9,10]. However, these studies' data were often collected through surveys, whereas qualitative data collection through focus groups might be more useful to obtain insight into the beliefs and attitudes towards dementia and dementia risk reduction. The open structure of focus group discussions provides the ability to identify unanticipated themes [11]. Kim et al. (2015) conducted a focus group study to investigate the knowledge, beliefs and attitudes towards dementia and dementia risk reduction in the general population aged 50 years and older [12]. They found that both fear of developing dementia and the need to improve dementia knowledge are important motivators for adopting and maintaining a healthier lifestyle for dementia risk reduction [12]. To our knowledge, none of the previous studies were aimed at a selected sample of descendants of people with dementia who have an increased risk of developing dementia [13]. To contribute to the development of a dementia risk reduction programme for descendants of people with dementia, the aim of the current study is to obtain insight into the knowledge, beliefs and attitudes towards dementia and dementia risk reduction among descendants of people with dementia. Fundamental elements can be captured to improve the willingness of middle-aged descendants of people with dementia to participate in a dementia risk reduction programme and adopt a healthier lifestyle. Moreover, by revealing areas for improvement, insight can be obtained on what factors a dementia risk reduction programme should focus on to enable health behaviour change. --- Method --- Participants In this qualitative study, focus group discussions were used. The study population consisted of descendants of people with Alzheimer's disease (AD), vascular dementia (VD) or mixed dementia diagnosed at hospital memory clinics in the northern part of the Netherlands. Twentyfour eligible participants of all adult ages and different educational levels were approached between February and June 2017 by medical specialists at the hospital memory clinic after diagnosing the individual's parents with dementia. Subsequently, these individuals were invited to participate in a focus group discussion shortly after the diagnostic consultation (1-2 months after diagnosis) and received a flyer with more information about the study. In total, nineteen eligible participants were interested in participation of which four could not participate due to practical reasons. Eventually, fifteen participants participated in one of the focus group discussions. The aim was to include four to six participants in each focus group, which were also referred to as 'mini groups'. This type of focus group gives the moderator the opportunity to gain more information from each individual and give more attention to the participants on this sensitive topic [11]. --- Data collection and procedure We applied a narrative interview approach with a topic guide specifically designed for this study that enabled discussion, clarification and verification of unanticipated themes [14]. A semi-structured topic guide based on the HBM [6] was used, aiming to identify the factors influencing health behaviour change for dementia risk reduction in adult children of patients with AD, VD or mixed dementia. The topic guide included questions on knowledge, beliefs and attitudes towards dementia risk assessment and dementia risk reduction (see Supplementary file 1). The moderator used open-ended questions to facilitate discussions and to provide the opportunity to the participants to talk freely. All the focus group discussions were held in a private room at the Medical Faculty of the University of Groningen (Groningen, The Netherlands). The focus group discussions were facilitated by an experienced female moderator (EM, also an ethicist) assisted by a trained female researcher (JV) who observed and took notes during the focus group discussions. Each focus group session had a duration of sixty to ninety minutes and was audio recorded with the permission of the participants for later analyses. Before each focus group, all participants were asked to complete a short questionnaire, including questions on age, gender and educational level. Drinks and snacks were provided during the focus group discussions. Afterwards, all participants received a voucher of twenty euros. The Medical Ethics Commission of the University Medical Centre Groningen (UMCG) concluded that this study was not subject to the Medical Research Involving Human Subjects Act. --- Analysis Qualitative content analysis was used to analyse the focus group data. Audio recordings from the focus group discussions were transcribed verbatim and analysed using Atlas-Ti version 8.1. Each transcript was analysed thoroughly, and when appropriate, a code was generated and assigned by two researchers independently (JV and RB). Moreover, a coding protocol was developed based on the analysis of the first transcript. Consensus was reached regarding the content of the codes by four researchers (JV, EM, RB and NS), which were used for the two remaining transcripts. Then, similar codes were grouped together and subsequently categorized into themes. --- Results Three focus group discussions were conducted in April, May and June 2017 with four to six participants each to achieve data saturation. The participant characteristics are provided in Table 1. The age of the participants ranged from 26 to 61 years (mean 48.8, standard deviation (SD) 12.0), and 80% of the participants were female. The majority (80%) of the participants had a high educational level (see Supplementary file 2 for the definitions of the educational levels). Four themes were identified in the analysis, of which three themes emerged directly from the topic guide: 1) knowledge on dementia and dementia risk reduction, 2) beliefs and attitudes towards dementia risk assessment and dementia risk reduction and 3) the requirements for a dementia risk reduction programme. One theme was not foreseen in the topic guide but instead featured prominently in the analysis, namely, the experiences of having a parent with dementia, including the related practical and emotional consequences for oneself. Although the research aim was to evaluate the knowledge, beliefs and attitudes towards dementia and dementia risk reduction, participants first exchanged their experiences of having a parent with dementia before we were able to discuss the topics in our topic guide. Each theme is described in the following sections. --- Experiences of having a parent with dementia Participants underlined the need to talk and share their experiences of having a parent with dementia with people who have similar experiences: 'For example, the participants perceived dementia as a severe disease and saw their parent becoming a different person: 'I feel that it is a demeaning illness because, as a person, you are so different after getting sick' (female, 50-60 years). Nevertheless, the participants were relieved when their parent finally got diagnosed and finally they knew what their parent was suffering from. Having a diagnosis also improved the understanding of their parent. For instance, they can now accept that their parent is not able to do the things anymore the way they did before: 'Yes, that is why I was ultimately relieved that it had been diagnosed, that I knew then, and then, I kind of resigned myself to it because certainly in the beginning, years ago, I thought, mum, please hurry up, what do you mean, you can't find the way anymore?' (female, 50-60 years). Having a parent with dementia has practical and emotional consequences. A practical consequence is taking care of their parent, which requires time: 'Well, of course, I'm a busybody, I mean, as an informal carer. I visit on average two to three times a week, so yes, that is rather intense' (female, 60-70 years). An emotional consequence of having a parent with dementia is the anxiety to develop dementia. When a parent was diagnosed with dementia at a particular age, participants were afraid to be confronted with dementia at the same age: 'My mother was diagnosed with Alzheimer's when she was 57, and she died of it when she was 67 (…) me and my brothers, we sometimes talk about it; we are simply afraid that we may be confronted with it at the same age' (female, 40-50 years). Nevertheless, learning to cope with having a parent with dementia was more pressing than thinking about their own risk of developing dementia: 'I am more concerned about my parents than about myself' (male, 50-60 years). --- Knowledge on dementia and dementia risk reduction The general knowledge of dementia varied between participants, regardless of their age, gender and educational level. Several participants explained the use of dementia as an umbrella term: 'Well, I think that dementia is an umbrella term, covering all those [types of dementia]' (female, 60-70 years). Some of the participants thought that Alzheimer's disease is worse than "normal" dementia. A small number of participants even explained the pathology of dementia, although hesitantly: 'It's to do with proteins in the brain, that the transmission of signals is poorer, and so on' (female, 50-60 years). Most participants were uncertain about the heritability of dementia: 'I'm not sure whether it is hereditary or not, or perhaps early-onset dementia is, I really don't know' (female, 60-70 years). One participant was even hesitant to obtain information about the heritability of dementia, since she was afraid to find information she did not want to know. Regarding their knowledge of dementia risk reduction, participants were initially uncertain whether the development of dementia later in life could be prevented or delayed. Therefore, non-modifiable risk factors were often mentioned first, such as age, genetics and family history. After encouraging them, participants also correctly guessed the majority of the currently known modifiable risk factors for dementia, such as poor diet and lack of cognitive activities. Participants also had suspicions and questions about other possible risk factors for dementia, such as sleeping behaviour, stress, traumatic experiences and mental wellbeing. Furthermore, several participants believed that a regular check of cholesterol, blood pressure and diabetes could also contribute to dementia risk reduction: 'Yes, and what we can do about it? Well, be watchful and check often' (male, 50-60 years). All the identified risk factors by the group are presented in Table 2. The majority of the participants indicated that most of their knowledge was gained from the internet, family and friends or a caregiver in healthcare. Participants indicated that their general practitioner only provided minimal information about heritability: 'I have discussed it with my GP, who gave me very little information. He said we can do a test or something (…), but otherwise he didn't give me much information' (female, 40-50 years). Overall, the participants were eager to receive more information on dementia and dementia risk reduction. --- Health beliefs and attitudes towards dementia risk assessment and dementia risk reduction Initially, most participants believed that a dementia risk assessment is a genetic test that shows the chance of developing dementia later in life. Given that they were unaware or uncertain about the opportunity to reduce their risk of developing dementia, most participants were also uncertain whether they would want to have their dementia risk assessed. Some participants indicated that they would like to have their risk assessed and subsequently reduce their dementia risk, but they were uncertain about whether this was possible. Their beliefs and attitudes towards dementia risk assessment and dementia risk reduction are reflected in their motives to assess dementia risk and reduce their dementia risk, which are shown below. The most frequently mentioned motive to assess dementia risk was the possibility of acting upon the outcome of a risk assessment: 'I would only want it if you know you can do something about it because otherwise it's just a dark cloud hanging over your head' (female, 20-30 years). Another motive was the optimism of having a treatment available in the future, so if necessary, this treatment could cure their dementia in the future. Several other motives to assess and reduce dementia risk were mentioned after providing the participants with information regarding dementia risk reduction. One of these motives was to adopt healthy behaviour for dementia risk reduction to age healthily. Some said they would do anything to turn the tide of the development of dementia and grow old in good health. Another participant added that there is no harm in trying and considered to take the information more seriously: 'Yes, I feel like this can't really hurt. Maybe there is something in what they say. I don't know , do something with your life, drink less alcohol. I don't know, but well, it doesn't hurt to try' (female, 20-30 years). Some participants found it already valuable to obtain insight into their health and lifestyle and just wanted to know everything about their health, even when it was not positive. Another motive was 'to have self-control', for instance by anticipating the results of a dementia risk assessment: 'I very much want to stay in charge (…) that is most important to me. That's why I would like to know (…). I am the kind of person who would opt for euthanasia at the final stage' (female, 60-70 years). Finally, one participant also mentioned their current cognitive health as a motive to adopt a healthy behaviour for dementia risk reduction: 'I'd say yes because I forget a lot of things even now; I sometimes wonder what I did this morning' (female, 60-70 years). Nevertheless, participants also mentioned several motives not to assess and reduce their dementia risk. A frequently mentioned motive not to assess dementia risk was that they are still young, and this would be something to consider in the future. However, one of the participants noticed that it could be possible to suffer from dementia already at her current age: 'But, yes, that's a bit funny. I think I'm [only] 60, but that's nonsense, of course because there were 60-year-olds in my mother's nursing home' (female, 60-70 years). Furthermore, the participants indicated that the outcome of a dementia risk assessment would cause restless feelings or anxiety given that it is unknown when symptoms will appear and how severe the symptoms will be. They also indicated that the outcome of the dementia risk assessment does not provide certainty that they will or will not develop dementia and that a healthy lifestyle is no guarantee to prevent dementia: 'no matter how busy you are, those very active people, they get it too' (female, 60-70 years). Finally, the participants believed that the ultimate choice is a balance of interest between enjoying moments in life and having a healthy lifestyle: 'You have to weigh up the interests, I think. So I think that I would consider something like, I am enjoying myself so much now, I will have a drink now and then maybe have a week less [to live] later on' (female, 50-60 years). --- Requirements for a dementia risk reduction programme The participants expressed their need for more information on dementia and dementia risk reduction and would like to receive this information in a dementia risk reduction programme. However, their choice to participate in a dementia risk programme also depends on the content of the programme, intensity of the programme, type of advice given in the programme, outcome measure of the programme and specific functions of the programme. They mentioned several requirements for a dementia risk reduction programme. First, the programme should be a central point of reliable, clear and up to date information about dementia and dementia risk reduction. Second, the programme should offer regular health check-ups, which should reveal room for improvement in relevant lifestyle factors they can act upon: 'if you really get the result like, "yes you will get it", that is different from "maybe you can do something about this"' (female, 20-30 years). Subsequently, participants would like to receive personalized lifestyle advice and not general information that is applicable to everyone: 'I think if it's about general things like I just heard about (…), then I think that's not something new for me, you know, (…), so I think then it must really be a specific thing for me, like this is your individual chance and you really have to do this very differently' (female, 30-40 years). Nevertheless, participation in the programme should not be too time consuming, since they also have a job, a parent to take care of and other activities in their lives. Further, participants would like to have the possibility to share information with their siblings. Finally, in order to increase motivation to stay in the programme, participants mentioned that it should enable participation without the help of healthcare providers, should be easily accessible, should provide regular reminders and it should not cause guilt feelings when not adhering to the advice. See Table 3 for an overview of the requirements. --- Discussion Although the research aim was to evaluate the knowledge, beliefs and attitudes towards dementia and dementia risk reduction among descendants of people with dementia, our findings demonstrate that individuals with a parent with dementia feel the need to share their experiences on how to cope with a parent with dementia with their peers and that their worry about their own risk of developing dementia was inferior to this need. Furthermore, initially, the participants were unaware or uncertain about the possibility of reducing the risk of developing dementia, resulting in uncertainty regarding whether they would like to assess their dementia risk. Although the participants identified a large number of modifiable risk factors as a group, they were eager to receive more information on dementia and dementia risk reduction. By sharing their experiences of having a parent with dementia and their knowledge of dementia, the participants adopted a more positive attitude towards participation in a dementia risk reduction programme and provided important elements for future dementia risk reduction programmes. --- Sharing experiences of having a parent with dementia In the current study, the participants underlined the importance of sharing their experiences of having a parent with dementia with individuals who have had similar experiences. Sharing experiences of having a parent with dementia seemed to be a prerequisite to thinking about their own health and dementia risk and facilitated movement between the pre-contemplation phase and the contemplation phase of behaviour change [15]. Therefore, it is important to incorporate interactions between peers, for example, group-based interventions. This setting might encourage individuals to participate and adhere to the programme. To the best of our knowledge, the FING ER (Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability) trial is the only dementia risk reduction trial to date that provided groupbased as well as individual interventions that significantly reduced dementia risk by improving or maintaining cognitive functioning [16]. In light of our results, the group-based interventions of this trial potentially primarily contributed to the effectiveness of the multidomain intervention. --- Knowledge on dementia and dementia risk reduction We found that knowledge on dementia and dementia risk reduction was limited, even among descendants of people with dementia. Most participants believed that a dementia risk assessment is a genetic test that shows the chance of developing dementia later in life. At first, the participants were uncertain whether it was possible to modify their risk for developing dementia later in life. Nevertheless, the participants in the current study eventually identified several modifiable risk factors for dementia as a group, which included the majority of the currently known modifiable risk factors for dementia, such as cardiovascular diseases [1,2]. The risk factors loneliness, obesity and renal dysfunction were not mentioned by the group. In the Netherlands, approximately 11% of the general population identified renal dysfunction as a risk factor for dementia, indicating that the majority are unaware of renal dysfunction being a risk factor for dementia [17]. The participants in the current study also had suspicions about whether sleeping behaviour, stress, traumatic experiences and mental wellbeing were modifiable risk factors for dementia. Although strong and sufficient evidence for these factors is still lacking, some studies support that these factors might play a role in the development of dementia [18][19][20]. Furthermore, at first, the participants were hesitant about assessing dementia risk without a treatment in sight due to their unawareness of the possibility of Table 3 Requirements for a dementia risk reduction programme Requirements Central point of reliable, clear and up to date information about dementia and dementia risk reduction Regular check-ups with an easy interpretable outcome measure and amenable for acting on Personalized lifestyle advice, including the benefits of adhering to the advice Not too time consuming. The intensity of the programme should not avert enjoying life next to a job and care of parent(s) Possibility to share information with siblings Easily accessible (e.g., without having to ask the general practitioner) Regular reminders by for example text messages Adopting a healthy behaviour is their own responsibility and independently performed without the help of healthcare providers Should cause no guilt feelings when not adhering to the lifestyle advice reducing dementia risk. This lack of knowledge forms a barrier towards lifestyle changes for dementia risk reduction. Individuals with more knowledge about dementia and dementia risk reduction might be more likely to adopt healthy behaviour. Therefore, promoting dementia awareness should especially be considered for descendants of people with dementia since this group at risk for dementia might be more receptive to health behaviour change. Improved knowledge about dementia and dementia risk reduction is not only helpful for reducing dementia risk, but could also be helpful for dealing with dementia related needs of the parent. Therefore, it is helpful for both the descendant and the parent with dementia. --- Health beliefs and attitudes towards dementia risk assessment and dementia risk reduction The participants in the current study perceived dementia as a severe disease and worried about developing dementia themselves. Previous literature has shown that individuals with a parental family history have a higher perceived risk of developing dementia than individuals without a parental family history [21][22][23]. According to the HBM, perceived risk is one of the determinants influencing the probability of adopting healthy behaviour [6]. Therefore, our hypothesis was that descendants of people with dementia are more receptive to adopting healthy behaviour for dementia risk reduction. However, despite their increased motivation to adopt healthy behaviour, our findings show that having a parent with dementia causes anxiety and might form a barrier to assess their risk and adopt healthy behaviour. Previous findings about whether having a family history has a positive effect on the motivation to adopt a healthy lifestyle appear to be contradictory [21,[24][25][26]. Two studies did not identify a difference in risk-reducing behaviour (e.g., trying to stop smoking, increasing physical activity) between individuals with and without a family history of cardiovascular disease [24,26]. However, two other studies demonstrated that a family history of diabetes, anxiety, depression and high blood pressure is positively associated with risk awareness and risk-reducing behaviour [21,25]. The self-perceived risk (e.g., perceived severity and perceived susceptibility) of developing a certain disease might mediate the association between having a family history and interest in health education to adopt a healthy behaviour [21]. Further, participants were afraid that the outcome of a dementia risk assessment might cause restless feelings or anxiety, since it does not provide certainty that they will or will not develop dementia later in life and a healthy lifestyle is not a guarantee that they will not develop dementia. This may suggest that focussing on maintaining optimal cognitive health instead of reducing dementia risk is preferred. --- Strengths and limitations To our knowledge, this was the first study that explored the knowledge, beliefs and attitudes towards dementia and dementia risk reduction among a selected sample of descendants of people with dementia. A major strength of this study is that it explored not only the knowledge but also the beliefs and attitudes of these individuals towards dementia and dementia risk reduction. Adequate knowledge is not sufficient for health behaviour change. Also positive health beliefs and attitudes towards dementia and dementia risk reduction are needed. With this study, we provided insight in what health beliefs and attitudes towards dementia and dementia risk reduction need to be improved in order for dementia risk reduction programmes to be effective. Another major strength is that we used focus group discussions, which are recommended to explore beliefs about health and disease [27]. Due to this study design, we were able to identify a finding that we did not anticipate in the topic guide. In addition, participants could share their opinion and react on each other's comments, leading to a discussion. This provided us with insightful information that we might not have collected using individual interviews. However, this study had certain limitations. The recruitment of participants was difficult. Not surprisingly, mainly highly educated individuals and females were included. Moreover, the recruitment setting may have led to selection bias for several reasons. First, females are more often informal caregivers and therefore accompany their parent more often to the hospital memory clinic [28]. Second, mainly patients with complex types of dementia visit the hospital memory clinic since patients need to be referred by their general practitioner [29]. Therefore, the study sample might not be representative of all descendants of people with dementia in the Netherlands. Most of the participants are highly educated. Knowledge about dementia and dementia risk reduction might be worse in lower educated individuals, resulting in different beliefs and attitudes towards dementia and dementia risk reduction. --- Implications These findings can be used in the development of dementia risk reduction programmes for descendants of people with dementia. Our findings strongly point to the importance of incorporating the possibility of exchanging experiences related to having a parent with dementia with individuals who have had similar experiences in a dementia risk reduction programme. It seemed that sharing experiences of having a parent with dementia is a prerequisite for offspring to think about their own health and dementia risk. Additionally, descendants of people with dementia made several recommendations about which other elements should be included in a dementia risk reduction programme (see Table 3). Based on these recommendations, the online lifestyle programme for the Demin study was developed [30]. This programme consisted of: 1) a dementia risk assessment on five measurement moments during 1 year follow-up (online questionnaires, physical examination and blood sample) and 2) an online tailor-made lifestyle advice regarding protective (Mediterranean diet, low/ moderate alcohol consumption, high cognitive activity) and risk factors (physical inactivity, smoking, loneliness, cardiovascular disease, hypertension, high cholesterol, diabetes, obesity, renal dysfunction, depression) for dementia. The outcome of the dementia risk assessment was indicated by the Lifestyle for Brain Health (LIBRA) score in which each protective and risk factors for dementia was categorized into one of the following categories: 1) keep this up, 2) room for improvement or 3) remember to manage well [31]. This type of outcome measure is easy interpretable and amenable for acting on. To improve the knowledge of the potential participants, we provided general information about dementia and dementia risk reduction on the Demin website (www.demin.nl), in plain text and spoken animations. Furthermore, the participants received tailor-made lifestyle advice, including information about the protective and risk factors for dementia, its association with dementia and recommendations how to improve their lifestyle with regard to that specific protective or risk factor. Unfortunately, it was not possible within the Demin study to incorporate the possibility for social contact between participants due to its construct (online lifestyle advice). However, participants had the opportunity to invite their siblings to participate in the study too. In the Demin study the uptake and effectiveness of this online lifestyle programme was investigated among individuals with a parental family history of dementia [30]. When the opportunity to share experiences of having a parent with dementia is also included in future dementia risk reduction programmes, the willingness to participate in a dementia risk reduction programme and the effectiveness in adopting and maintaining healthy behaviour among descendants of people with dementia might be further improved. Our findings also support reinforcing knowledge about dementia and increasing the awareness of the opportunity to reduce dementia risk through a healthy lifestyle. More knowledge and awareness can contribute to more positive health beliefs and attitudes towards dementia risk reduction. For example, this increase in knowledge could be achieved through a targeted national mass media campaign aiming to motivate individuals to address their personal risk factors. As general practitioners are often the first point of contact for people who are concerned about their health and dementia risk, they should be educated about the opportunity to reduce the risk of developing dementia and methods to use this information to inform descendants of people with dementia properly. --- Recommendations for future research First, evaluating the knowledge, beliefs and attitudes of less educated descendants of people with dementia would be a valuable addition for future research since there is more room for improvement regarding lifestyle changes for dementia risk reduction. Subsequently, we encourage the development of dementia risk reduction trials for descendants of people with dementia, including the possibility of exchanging experiences with individuals who have had similar experiences to improve recruitment and to be effective in adopting healthy behaviour for dementia risk reduction. --- Conclusion Sharing experiences of having a parent with dementia seemed a prerequisite for thinking about one's own risk of developing dementia and participating in a dementia risk reduction programme. Knowledge of dementia and dementia risk reduction is limited. Due to the unawareness of the possibility of reducing dementia risk, the participants were hesitant about assessing their own dementia risk without a treatment in sight. Sharing information about risk factors for dementia and the importance of a healthy lifestyle could change people's perception of dementia risk assessment and their willingness to participate in a health behaviour programme for dementia risk reduction. Therefore, education on dementia and dementia risk reduction is needed. --- Availability of data and materials The data collected during this study will be available from the corresponding author upon reasonable request. --- Supplementary Information The online version contains supplementary material available at https://doi. org/10.1186/s12889-021-11415-2. Additional file 1: Supplementary Table 1. Focus group topics and illustrative questions. Supplementary file 2. Definitions of low, middle, and high level of education based on the International Standard Classification of Education. Authors' contributions JV, EM and NS contributed to the design of the study. EM and JV collected the data. JV and RB conducted the analyses. JV wrote the manuscript. EM, RB, AAH, PPDD, RCOV, FER, EB, SEdR and NS revised the manuscript. All the authors read and approved the final manuscript. --- Declarations --- Ethics approval and consent to participate The Medical Ethics Commission of the University Medical Centre Groningen (UMCG) concluded that this study was not subject to the Medical Research Involving Human Subjects Act. Participants provided written informed consent. --- Consent for publication Not required. --- Competing interests None declared. --- Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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FAMILY PLANNING BETWEEN THE SOMALI CULTURE AND THE ISLAMIC TRADITION

This essay examines the intricate connections between the Islamic faith, Somali culture, and family planning. Large families are viewed as a sign of social prestige and pride in Somali culture, which explores the societal norms and expectations surrounding family size. Examined are how maternal responsibilities and the extended family structure affect reproductive choices. The influence of Islamic teachings on family planning techniques in the Somali community is also investigated. Islam favors procreation and regards children as a heavenly blessing, but it also advocates responsible parenting and places a strong emphasis on the welfare of parents and children. The paper explores the ways in which Islamic scholars have interpreted sacred texts to advocate for the use of contraception within specific parameters. A sophisticated approach to family planning is produced by the fusion of Islamic tradition and Somali culture, balancing societal expectations with the welfare of the individual and the family. The abstract ends by emphasizing how crucial it is to comprehend these cultural and religious aspects in order to create successful tactics that respect the ideals and principles of the Somali community while advancing all-inclusive reproductive health care.

INTRODUCTION Family planning is a complicated subject with many facets that touch on different cultural and religious beliefs. One such intersection is that which exists between Islamic tradition and Somali culture. Somalia, a country with a large Muslim population, has a rich cultural background that affects how it views family planning. Nevertheless, Islam has a big influence on how the Somali community views and behaves in terms of reproductive health. The idea of family planning is frequently regarded in Somali culture through the prism of societal standards and expectations. The importance of the extended family structure cannot be overstated, and for people and their families, having children is a joy and a source of pride. According to a study by (Straus et al., 2009), Somali women see having big families as a sign of social prestige and motherhood as an integral component of their identity. In order to assure the continuance of the family line, there may be social pressure on couples to have more children, especially sons. It is crucial to remember, though, that Islam also encourages responsible parenting and places a strong emphasis on the health of both parents and children. Islamic scholars have interpreted a number of verses from the Quran and Hadiths (prophet Muhammad's sayings) to justify the use of contraception when used within specified parameters. For example, a renowned Islamic Philosopher (Al-Qardawi, 2013) has said that contraception is acceptable as long as it does not endanger the woman's health or require permanent sterilization. Overall, Islamic teachings and societal expectations both have an impact on family planning in the Somali culture. Islam provides a framework that enables ethical decision-making on reproductive health, notwithstanding the widespread desire for big families. --- FAMILY PLANNING AND THE ISLAMIC TRADITION Islamic academics and religious authorities have engaged in extensive discussion and debate on the subject of family planning. Marriage, reproduction, and family life are only a few of the topics that are covered in detail in Islam as a holistic way of life. The Quran, the Hadith (sayings and deeds of Prophet Muhammad), and the consensus of Islamic scholars are the sources of Islamic ideas and teachings on family planning. We must take a closer look at the big picture in order to completely comprehend the Islamic perspective on family planning. Naturally, it starts with promoting the life principle. Thus, the Prophet's advice to procreate and the Qur'anic ban on infanticide, a common pre-Islamic practice involving born children that was primarily driven by economic and gender factors, were both given (Azizah, 1993). The major source of Islamic doctrine, the Quran, does not specifically mention family planning. However, it places a strong emphasis on the value of good parenting and the welfare of kids. Muslims are urged by the Quran to fulfill their obligations to their families and to provide for their children's material, spiritual, and emotional needs. Additionally, it encourages moderation in all facets of life, including conception. Surah Al-Isra (17:31) is one scripture that is frequently brought up in conversations on family planning. It reads, "And do not kill your offspring for dread of poverty. We take care of both them and you. Indeed, it is a serious sin to murder them. Many academics understand this text as forbidding the purposeful termination of pregnancy only because of financial worries or fear of poverty. It emphasizes the value of life and the obligation to raise one's children. Muslims who favor family planning frequently claim that the Qur'an is silent on the subject, and they interpret this silence as an affirmation rather than a condemnation. For example, Fazlur Rahman has noted that "one finds nothing which opposes the view that we should control our population, for a time, to remedy our present situation (Rahman 1972, 94)" in the verses of the Holy Qur'an. Conservative Muslims, however, like Abul eAl Maududi, maintain that "the Qur'an is not silent" (Maududi 1974, 83) regarding the matter. They cite the Qur'anic prohibition of the practice of burying live female infants, the "killing" of infants is forbidden or condemned in the Qur'anic verses (Surah 6: Al-Adam: 137, 140, 151; Surah 17: Al-isaii:31; Surah 60: Al-Mumtahanah:12), which were common in pre-Islamic Arabia (Surah 81: At-Takwir: 8-9; Surah 16: An-Nab!: 57-59). In addition, they cite the following verses to back up their claim that procreation is a gift from God (Hassan, 2000). From the afore discussion, it is clear that when dealing with the family planning issue, Muslims are not in agreement in its permissibility or lack of it. The polarity of opinions on this topic among the Muslims paves the way for many to adopt a flexible approach mainly based on their own personal understanding and choice, while others follow people whom they think are in a better poison when dealing with Islamic knowledge. Additional information about family planning in an Islamic setting can be found in the Hadith, Contraception and birth control methods are not explicitly mentioned in the Prophet's sayings, however there are narrations that touch on related subjects. The story of Jabir ibn Abdullah asking the Prophet Muhammad(Saw) about the coitus interruptus (withdrawal method) as a method of contraception is one Hadith that is frequently cited. Although the Prophet did not expressly forbid or support this strategy, he did encourage Jabir to respect his wife's rights while simultaneously Volume: 10 | Issue: 9| September 2023 ---------------------------------------------------------------------------------------------------------------------------------------------------------- pursuing his own ambitions. Although this narrative suggests that the withdrawal procedure was known and used throughout the time of the Prophet, it does not make a firm determination about its legality. Another Hadith that is frequently quoted is one in which the Prophet Muhammad gave advice to a man to wed a childbearer. Some academics interpret this story as an exhortation to reproduce and preserve the human race's continuance. It should be understood that this advice was given to a specific person and might not be appropriate in all situations. Diverse viewpoints on family planning practices have been offered by Islamic thinkers. According to the majority of academics, family planning is acceptable as long as it doesn't result in permanent sterility or harm to the person's health. They contend that Islamic teachings support responsible parenthood and permit the use of contraceptives that are secure, reversible, and do not obstruct the normal reproductive cycle. Neither the topic of family planning is novel to Islamic societies nor is it a Western plot. Family planning is defined clearly in Islam, and it is also suggested how much of it is acceptable. Although there are many various ways to interpret these teachings, many Muslim nations have historically used them to guide their population strategies(El Hamri, 2010). From the above analysis, it is safe to seek knowledge from authentic and reliable sources and at the same time behave responsibly and fear Allah, keeping always in mind that we are all accountable to Allah for all our intentions, practices and deeds. --- FAMILY PLANNING AND THE SOMALI CULTURE Family planning is a subject that covers a number of reproductive health issues, such as contraception, knowledge of one's own fertility, and the spacing and timing of pregnancies. It is impacted by social, economic, cultural, and religious aspects. Family planning procedures and attitudes in Somali society are influenced by a blend of conventional principles, Islamic teachings, and modern trends. The idea of family planning has existed for millennia in Somali society, even though it may not have been known by that name. In the past, Somali groups used a variety of techniques to regulate the size of their families and the spacing between births. Long-term nursing, abstention during specific times, and herbal cures were some of these techniques. Rather than population control, mother and child health was frequently the primary driver of these measures. (Deyo, 2013) reported that, the practice of solely breastfeeding a child for two years is known as "child spacing," and it is done for the mother's health as well as the health of any future children she may have .Among the different methods used in family planning, child spacing, using long -term nursing is the preferred procedure regarding Somali culture. This is because both parents believe, this practice is good for the health of the mother and the child as mentioned earlier. --- Islamic Teachings Somalis' views on family planning are significantly influenced by Islamic teachings. Islam promotes responsible parenting and places a strong emphasis on taking good care of one's children. Although the use of contraception is not expressly forbidden in Islam, different scholars have different views on whether it is acceptable. According to certain Islamic scholars, contraception is acceptable as long as it doesn't endanger a woman's health or completely prevent her from having children. Others feel that contraception should only be used under legitimate medical circumstances or with both partners' permission. Religious Islamic leaders who were contacted stated that certain practice suggestions for the use of contraception are allowed in connection to birth spacing in order to promote the health of the mother and child. The term "birth spacing" is preferred over "family planning" when providing Muslim women with expert contraception guidance (Egeh et al., 2019). As explained elsewhere in the paper, the Somali culture gives priority to the health and well-being of the mother and her child over population control when considering family planning issues. Family planning strategies in Somali culture have been touched by contemporary influences as well. Social standards and values have changed as a result of urbanization, globalization, and more access to education. The attitudes about family planning have changed as more Somalis are exposed to contemporary ideas and concepts through media and encounters with other cultures. ---------------------------------------------------------------------------------------------------------------------------------------------------------- -------34 The Intersection of Somali Culture and Islamic Tradition It can be difficult to understand how Somali culture and Islamic family planning customs interact. While larger families may have been valued in traditional Somali culture, responsible parenting, and children's welfare are stressed in Islamic teachings. --- Volume: 10 | Issue: 9| September 2023 Due to both cultural shifts and Islamic beliefs, there has been an increase in the acceptance of family planning within the Somali community in recent years. Numerous religious figures in Somalia have acknowledged the value of family planning in advancing the health and welfare of households. Couples have been urged to think carefully about how far apart to have their kids, keeping in mind things like the mother's health, their financial situation, and their capacity to care for each child properly. It is crucial to remember that some Somali populations still cling more strictly to traditional cultural traditions and can be less tolerant of contemporary family planning techniques. (Gele et al., 2022) noted that more stringent and successful programs should be the current approach to assist minimize the risk of unsafe abortions in Somalia, where pervasive unfavorable attitudes regarding abortion, as mandated by the culture, obstruct access to safe abortions. Lack of education, poor access to healthcare, and deeply set cultural views are just a few of the things that can make people reluctant to use family planning methods. --- THE SOMALI GOVERNMENT The government of Somalia is aware of the value of family planning in advancing both sustainable development and mother and child health. There have been initiatives to broaden national access to reproductive healthcare services. The framework for managing the nation's supply chain for sexual and reproductive health has been enhanced(United Nations Development Programme Somalia, 2008). Nevertheless, problems such as a lack of resources, substandard infrastructure, cultural obstacles, and low awareness persist. --- CONCLUSION There are many facets and complexities to the discussion of family planning between Islamic religion and Somali culture. Large families are highly valued in Somali culture, which also sees kids as a blessing. Islamic teachings, however, also stress the value of good parenting and offer recommendations for family planning strategies. Islam provides for flexibility in family planning decisions as long as they are undertaken within the bounds established by Islamic teachings, notwithstanding potential conflicts between cultural standards and religious views. It is essential to handle this subject with consideration for both cultural and religious viewpoints. Programs for education and awareness can be quite effective in bridging the gap between religious teachings and cultural customs and assisting people in making family planning decisions. Involving community elders and religious leaders in family planning meetings might also aid in resolving any misunderstandings or potential disputes. Overall, when discussing family planning within the Somali community, striking a balance between cultural values and religious convictions is crucial. It is possible to assist people in making decisions that are consistent with their cultural heritage while still respecting their religious values by encouraging open communication, education, and understanding. --- RECOMMENDATIONS ➢ Understanding Somali Cultural Perspectives: To effectively address family planning in the Somali community, it is crucial to comprehend the cultural perspectives and beliefs that shape attitudes towards reproductive health. This section should discuss the significance of extended families, the value placed on children, and the role of traditional gender roles in Somali culture. Emphasize the importance of approaching family planning discussions with cultural sensitivity and respect for these values. ➢ Exploring Islamic Teachings on Family Planning: Islamic teachings offer guidance on various aspects of life, including family planning. In this section, provide an overview of the Islamic principles related to reproductive health, contraception, and responsible parenthood. ---------------------------------------------------------------------------------------------------------------------------------------------------- Misconceptions and myths surrounding family planning often exist within cultural and religious contexts. This section should focus on debunking common misconceptions about contraception and family planning methods that may hinder their acceptance within the Somali community. Provide evidence-based information and cite reputable Islamic scholars to reinforce the compatibility of certain methods with Islamic principles. ➢ Promoting Education and Awareness: Education and awareness campaigns play a vital role in promoting family planning practices. Discuss the importance of culturally sensitive educational initiatives that empower individuals, particularly women, with knowledge about reproductive health, contraception options, and responsible family planning. Highlight the significance of involving trusted community leaders, religious scholars, and healthcare providers in disseminating accurate information. ➢ Encouraging Open Dialogue and Collaboration: Facilitating open and inclusive dialogue among community members, religious leaders, and healthcare providers is crucial for fostering a supportive environment for family planning. Encourage the establishment of community-based forums, workshops, and counseling services that provide a safe space for discussions, address concerns, and offer guidance on family planning matters. Collaborate with local religious institutions to integrate family planning education within religious teachings. ➢ Strengthening Healthcare Infrastructure: Efforts to promote family planning within the Somali community must be supported by accessible and culturally sensitive healthcare services. Advocate for the expansion of healthcare infrastructure, including reproductive health clinics, that offer a wide range of family planning options while respecting cultural preferences. Encourage healthcare providers to receive cultural competency training to better serve the Somali population.

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Mudling Through Intersectionality Theory for Leadership Futures: Pathways Toward Policies for Reinventing Gender Spaces for Educational Leadership in Two Male Schools in Ghana

This paper examines the advances made on gender issues in Ghana, particularly regarding how far misogyny is being watered down in educational leadership. The article thence reflects on how society might resolve the question of the effects of misogyny on educational leadership futures and the associated possibilities, and decisively address this enervating question in the decades ahead. The paper discusses how individuals and groups are resisting and challenging their experiences of gender inequalities, as well as attempting to intervene and correct the causes and consequences of gendered power imbalances. The paper does not intend to assess all the facets of gendered life and inequality. Instead, it discusses arguments that have been put forward regarding re-engineering gender spaces for educational leadership futures. Data obtained from two all-boys' schools suggest that gendered inequality is visible in both public and private spheres. However, the validity of the arguments that gender inequalities are still entrenched and persisting over time, place, and culture is contrasted with alternative claims from the data that gendered power relations, and for that matter inequalities, are gradually being eroded. Furthermore, the current academic focus on the concept of intersectionality regarding how variables like gender, tribe, religion, and culture intersect to define people's gendered experiences, is used as the analytical framework. The study of women's educational leadership experiences in this paper is used as a framework to further examine these issues and address some of the debates. The paper concludes with an argument that the study of inequality in relation to gendered identities, relations, and experiences must continue with an exploration of the study of men and masculinities if the theoretical analysis of gender is to be enriched to re-invent genders spaces for educational leadership futures. We also argue the view that to set the agenda for a more equal educational leadership future, society must see the need to link gender closely to other forms of social inequalities.

INTRODUCTION To my mind inequality is the main roadblock in our journey toward social justice, and we need an innovative approach to uprooting it that won't produce the same negligible incremental change we've seen in recent years (Willis, 2014). This paper examines the subtle drifts from the male domination in educational leadership that characterized much of the previous centuries. The paper believes that these drifts are manifesting themselves in many different ways such as the feminization of leadership styles, the decline of hierarchy and the rise of soft power, and especially the change in roles and attitudes towards work and family life, especially from men. So, educational organisations that wish to thrive in the future would have do well to develop a culture along these trends. This is imperative for future organisational life because the gender power shift that is occurring in twenty-first-century organisations will be an indisputable triumph for educational and for that matter socio-economic progress as it seeks to enable women at every level to realize their true potential. Subsequently, organisations that ignore these trends do so at their own peril. This is the second decade of the twenty-first century, and it is significant that the vexed subject of gender in organisational life is commanding more serious attention than ever before. Much of this attention focuses on the many years of equality debate which has sought to make women at ease and comfortable in their leadership positions due to the support and recognition being given to them by men, and even the achievement of parity with men at the top of organisational life, especially in educational organisations. The signs of these shifts however tend to be obscured when the spotlight is put on the top of organisational hierarchies because the signs manifest mostly at the middle management level. Besides, there are other less discussed aspects to the gender debate that signal that a shift is under way. These are signaled by the very urgency that this issue commands, as well as the coalitions that have joined the calls for change. This notion of power residing only at the top of organisations is under challenge in the 21 st century. Technological and social changes are breaking down traditional hierarchies and distributing power more widely both within organisations and between them and their networks of external partners. Thus, in the 21 st Century public administration, organisations depend on a growing "contingent" workforce of external contractors and freelancers. New and smaller organisations such as schools are beginning to consist mainly of peers collaborating with each other, with very little if any hierarchy. These trends are set to continue as work becomes increasingly portable and people experiment with more autonomous ways of working. Aron (2013) has predicted the rapid growth of clusters. These are self-governed groups of professionals with a range of skills who will be hired by organisations to work long-term on projects and operations. Thus, this shift away from massive standalone organisational structures will undermine the link between status and position in a hierarchy. Status will instead rely increasingly on unique skills and talents, or the ability to connect people, or being an inspiring leader. The whole approach to the new world of work will require workers to become personal leaders. Maitland and Thompson (2014) have said that "… you need to lead your own life rather than being controlled by the boss as in the past, and if you are able to do that, you are able to lead others." The Edelman Trust Barometer (2014) shows that the democratization of work environments runs parallel to a decline in trust in traditional authority figures, and that people are more likely to trust experts, or to put their faith in their peers. The trust barometer indicates that trust in the CEO is at 43%, while trust in academics stands at 67% and trust in "a person like yourself" at 62%. This poses a challenge for leaders of traditional organisations, and leaders in some organisations are beginning to acknowledge that they need to encourage a greater diversity of leadership styles that seek to achieve gender balance as part of the solution. Furthermore, in the 20 th century, the exercise of hard power was much lauded at the workplace. However, Nye (2005) has developed the concept of soft power which relates to persuading people to do what you want by attracting and co-opting them, rather than coercing them. He developed this concept in relation to world politics but the concept is now being used in public administration, with a growing emphasis in leadership development on the ability to listen, seek out other perspectives, and earn followers, alongside standard leadership traits such as resilience and decisiveness. The rise of soft power seeks to make leaders more effective, and is tending to open the door more widely to women's leadership. As a sequel to this view, Tost et al. (2013) have argued that teams perform less well on assigned tasks when led by people who equate leadership with power, dominate discussion, and discount the contributions of other team members. Their experiments found that the psychological effect of power on a team leader had a negative impact on team performance. This connotes the feminization of leadership in the public sector and this is manifested in the 21 st century as demand grows for skills that are suited to flatter more open and democratic organizations, and the preferences of younger generations. These skills are expressed in concepts like 'emotional intelligence', 'people skills', and 'flexibility' which are traditionally deemed to be more feminine leadership skills, and are highly valued in 21 st century public administration, and coincidentally expresses the outlook for educational leadership futures. These exigencies suggest that women are likely to lead the way in reshaping how jobs are done, including at senior levels in the educational sector. These participative concepts for leadership, (which of course is not the preserve of females) is linked to more productive teamwork. However, women on average are known to score higher than men on social perceptiveness (i.e., correctly reading emotions). Wooley et al. (2010) studied the "collective intelligence" of teams regarding their ability to solve puzzles and problems and found that, gender mix played a big part. The researchers were looking to see if a team's collective intelligence equated to the average of the IQs of its members. IQ turned out not to be a key factor. However, the teams with more women had higher scores, demonstrating a stronger collective ability to solve problems and achieve goals. On another hand, technology is also putting more power into the hands of knowledge workers in the public sector, many of whom have greater choice than ever before about how, where and when they work. Besides, people with skills that are in demand also have more choices about who to work for, or with. Organisations can therefore no longer assume that workers will just accept standard conditions of employment or traditional working patterns. This scenario has been created in the 21 st century as many responsibilities at the workplace are technology-enabled and organisations are able to staff online moderators and community managers across the world, most of whom work virtually from their homes, and have developed a reputation for high-quality customer service and a supportive working culture. From this background, the paper sees both female and male professionals leading a shift in the way that organisations are run and do business. This implies a changing roles of public sector leadership with increasing emphasis on empathy for people and a more focus on communication, especially in terms of accommodating varied work patterns that enable females to scathe the otherwise brush culture in their organisations. This is the result of the changes in the digital revolution and the increasing use of social media which has created a sea of change towards getting the right work culture. The assumption is that, the enhanced focus on people, communication and culture will create the environment where women will thrive. The evidence shows that women are leading the way in reshaping how jobs are done, including at senior levels with technology breaking down the barriers. As the future looks more promising than the past for women professionals, it creates a parallel opportunity for men too, which adds to the advantage for women. This means that the greater power-sharing opportunities at work comes with greater sharing of responsibility for children and the home. Organisations have typically regarded gender issues as women's issues. That was always a mistake, but now the pressure is increasing on organisations to acknowledge that men have caring responsibilities too. The model of male breadwinner and female caregiver is fast disappearing. So, the merging, or reversal, of traditional gender roles has major implications for work and society. Work-life conflict used to be seen primarily as a problem for women. But research reveals that employed fathers in dual-earning couples are now more likely than mothers to experience such conflict. There are ways for employers to reduce this, enabling both men and women to manage work and home life more effectively. As men seek to play their full role as fathers, it creates opportunities for enhancing women's progress at work. Moreover, shared parenting and earning creates the best advantage for the family. The idea here is that, the participation of fathers at home takes pressure off mothers, helping them to perform better at work. Such is the outlook for educational leadership futures that has created space for women to excel. The issues raised so far are salient to a convention in Ghana where boys' senior high schools are headed by males whilst girls' senior high schools are headed by females as observed by Preko (2012). He says also that in Ghana, managerial positions have been coded as masculine and this view runs through homes to workplaces. However, this trend seems to be changing as some boys' senior high schools (SHSs), now have females as their heads. On the face value, this does not appear to be an issue but given the long-standing tradition of males heading boys' SHSs, this is a critical difficulty in lieu of the challenges faced by the female leaders of such boys' only SHSs. Odei-Tettey and Mensah (2015) have said that such challenges can be surmounted if society will understand the cosmic logic of the concept of co-existence of opposites. The idea is that the world and existence are fully packed with mythic opposition, and that has implications for male-female complementarity in educational leadership. This view notwithstanding, Helterbran and Rieg (2004) have said long ago that parents and community members believe that males can effectively discipline male students than can women, and this has created a perception that men can handle boys' SHSs better than women. This perception tends to results in gender stereotype and intimidation which affect the effective functioning of the female leader of boys' SHSs. Contrary to this view however, the paper argues that the success of schools among other things depends on the effectiveness of the school head as a leader. This claim acknowledges the complexities associated with role of the school head. Thus, in performing their duties, female school leaders face myriad of challenges that range from gender discrimination to disciplinary issues amongst staff and students. These challenges are very profound in patriarchal societies for women in leadership positions due to the socialisation process that result in gender discrimination, as attitudes manifest and give much preference to males over females in many aspects of organisational life. This phenomenon tends to create patriarchal cultures that hinder women from being seen and heard (Mutabai, 2016), and renders the workplace environment non-welcoming for female leaders. The emotive issues discussed so far brings interesting and crucial twist to the gender debate which most societies have only recently begun to address. This makes for a renewed focus on continuous and structural gendered power relations, discrimination, institutional and structural inequalities, and the impact this has on everyday lives, and at the same time, also affords a discussion of organisational roles, optimism, and collaboration, as well as the increasing realisation of men's role in making major and significant improvement in creating gender spaces for leadership. So, in this paper, we place great emphasis on intersectionality and how gender issues link to other categories, such as tribes and family roles to informs the debate. 'Intersectionality' is an emerging concept in policy analysis and academic contexts, and so it is important to clearly define and explain the concept for its usage as the analytical framework for this paperthat is, in its application to policies for reinventing gender spaces for educational leadership futures. As a concept, intersectionality has been interpreted in the literature as a theory, methodology, paradigm, lens, tool and framework (Hankivsky, 2014;Collins, 2015;Cho et al., 2013;Sigle-Rushton, 2013). This paper does not seek to distinguish between these interpretations, but rather to introduce the key aspects of what it means to take an intersectional approach to understand structural inequality to aid policymaking for creating gender spaces for educational leadership futures. The intersectionality theory is traced to Crenshaw (1989) as she used the concept to refer to the double discrimination of racism and sexism faced by Black women, as a critique of the dominant single-axis framework that is used to frame antidiscrimination laws, with its focus on the experiences of the most privileged members of subordinate groups (Crenshaw, 1989). Crenshaw provided the following definition of intersectionality: "Intersectionality is a metaphor for understanding the ways that multiple forms of inequality or disadvantage sometimes compound themselves and create obstacles that often are not understood among conventional ways of thinking" (Crenshaw, 1989). However, while Crenshaw was the first to use the term intersectionality, the concept did not represent a new way of thinking. Later, Loden and Rosener (1990) developed the 'Diversity wheel' concept as a framework for thinking about the different dimensions of diversity within individuals and institutions. Intersectionality has since evolved to provide a useful tool for thinking about how different characteristics intersect with systems and structures to shape a person's experience. It is important to point out at this point that due to the rapid increase in the application of intersectionality across many fields, there exists a variety of definitions of intersectionality in the literature. However, for the purposes of this paper, we point to some common themes and assumptions embedding the theory. Consequently, we submit the foundational elements of intersectionality to encompass: a. the acknowledgement that individuals are shaped by their simultaneous involvement with multiple interconnected social entities. b. The interaction between multiple social entities takes place within a framework of linked systems and power structures involving laws, policies, and governments. This suggests that the appreciation of inequality of power is key to understanding intersectionality. c. Systemic inequalities, that reflect relative privileges and disadvantages, are the consequences of the interaction between social entities, power relations and circumstances. Hence, people's experiences of inequality can be enduring or temporary, and therefore creates unique lived experiences. d. Intersectionality is primarily a tool for understanding invisible power relations and how they shape inequality. Intersectionality looks at 'interlocking' systems of oppression and how this plays out in people's lives (see, Collins, 2015;Else-Quest & Hyde, 2016;Hankivsky, 2014;Scott & Siltanen, 2016). In order to understand the central tenets of intersectionality theory, we find it helpful to also point out what intersectionality is not. Intersectionality is not: a synonym for diversity; about adding up different kinds of inequality, and does not look to simply add up the sum of different oppressions; about pitting different people or groups against each other to assess who is most marginalised or disadvantaged; and looking to construct a hierarchy of inequality (Poverty and Inequality Commission, 2021). These imperatives of intersectionality in practice are best explained with illustrations that are found in the literature. Crenshaw (1989) has illustrated the concept thus: Black women sometimes experience discrimination in ways similar to white women's experiences; sometimes they share very similar experiences with Black men. Yet often they experience double discrimination -the combined effects of practices which discriminate on the basis of race, and on the basis of sex. And sometimes, they experience discrimination as Black women -not the sum of race and sex discrimination, but as Black women. Christoffersen (2017) has recently given an illustration of intersectionality as: "A person is not, for example, a woman on one hand and disabled on the other; rather she is the combination of these at the same time, that is, a disabled woman. In this example her identity as a woman is shaped by her identity as disabled, and vice versa as the elements of identity are not lived or experienced separately". So, 'intersectionality' refers to the interactions between the characteristics of inequality together with the wider characteristics that shape lived experiences of discrimination, inequality and privilege such as socio-economic disadvantage, occupation and care-experience (Christoffersen, 2019). These are identified to eliminate unlawful discrimination, harassment and victimisation, and to advance equality of opportunity, for individuals who are faced with discrimination (Mügge et al., 2018). So, as part of its contribution to the gender debate, this paper applies intersectionality theory to the examination of different facets of inequality associated with gender issues in school leadership in all boys' senior high schools, and advocate for policies to re-invent genders spaces and futures for educational leadership futures. The paper therefore does not seek to examine all areas of gendered life and inequality as its scope. Rather, it discusses arguments that have been put forward by the data, and contextualizing these for future possibilities regarding gender co-existence in educational leadershiptermed as, educational leadership futures. These arguments suggest that gendered inequality is visible in both public and private spheres. However, the validity of the arguments that gender inequalities are still entrenched and persist over time, place, and culture is contrasted with alternative claims from the data that gendered power relations, and for that matter inequalities, are gradually being eroded. Furthermore, the current academic focus on the concept of intersectionality regarding how variables like gender, tribe, family roles, social status, and culture intersect to define people's gendered experiences, is included in the discourse. Therefore, the study of women's educational leadership experiences will provide a framework to further examine these issues and address some of the debates. --- Statement of the problem The problem that underpinned the study is that: it is uncertain how long the leadership successes made by female heads of all boys' SHSs and enabled by the support and collaboration from their male colleagues will persist and perpetuate gender spaces for educational leadership futures. This problem is borne from an environment in Ghana where women in educational leadership positions have experienced discrimination from their male counterparts (see Mensah, Odei-Tettey & Osaebo, 2014). Even when women have equal qualifications and achievements to that of their male counterparts, and in spite of their abilities and accomplishments, they are less favourably preferred. This stereotyping tends to reflect in evaluations and promotions, and consequently puts women at a tactical disadvantage for advancement (see Eagly & Karau, 2002). Despite these challenges, some women in Ghana have accepted to lead all-male SHSs with remarkable success. --- Purpose of the study The study sought to investigate the sociocultural experiences of female managers and to explore how they have survived the patriarchal culture in the selected male SHSs in order to make policy recommendations for re-inventing genders spaces for educational leadership futures. --- Objectives of the study The study was guided by the following objectives: a. To find out the socio-cultural experiences of female managers in the selected male SHSs in Ghana. b. To explore the support services and strategies used by female leaders to deal with patriarchal challenges in the selected male SHSs as a basis for making policy recommendations towards creating gender spaces for educational leadership futures. --- Research questions The study sought to answer the following questions: a. What are the socio-cultural experiences of female managers in the selected male SHSs in Ghana? b. What support services and strategies do female managers use to deal with the patriarchal challenges in the selected male SHSs as a basis for making policy recommendations towards creating gender spaces for educational leadership futures? --- Theoretical Framework The fundamental assumption of this paper is that, 'female managers can overturn the patriarchal challenges they face in the line of duty if they adopt appropriate strategies to use the support systems available to them in male senior high schools. This is founded on two fundamental concepts that are gleaned from research questions: socio-cultural experiences of female managers in male SHSs, and support services and strategies used by females to deal with patriarchal challenges in male SHSs. Socio-cultural experiences of female managers in senior high schools Atta (2015) has said that social and cultural beliefs, practices and attitudes of society continue to perpetuate discrimination against women. So, male dominance, and the spectre of male interference, continues to be high and eminent even in this modern Ghana (Anewu, 2010). Gender discrimination in Africa is defined by the way culture has been shaped and this has created the perception that women cannot hold high leadership positions. Many researchers have indicated that women encounter huge challenges in assuming senior positions in organisations and this phenomenon is attributed to cultural perceptive that influences female participation. For example, women in Africa are perceived as domestic workers who should take care of family duties. Nukunya (1998) has asserted that in many Ghanaian societies, the traditional position is that a woman is never wholly independent. He postulated that a woman must always be under the guardianship of a man, and when she marries, her original guardian hands over some or all of his responsibilities for her to her husband. Also, traditional gender roles that have been socially constructed affect women's leadership in Africa. Policy makers have also been cited as previously lacking efforts to promote women's progress in taking up high leadership positions (Mutabai, 2016). So, traditional gender roles and socio-cultural norms together with the selection process lower women's self-confidence and career aspirations. Promoting women's progress therefore calls for cultural change which will require the efforts and cooperation of many authorities, organisations, and policymakers (Arkorful, Doe & Agyemang, 2014). Literature shows that much mistrust in women leadership is caused by a number of factors which include tradition and culture (Mensah et al, 2014, Moorosi, 2010); perception of school administration (Maseko, 2013); and stereotyped notions about women's leadership (Kitele, 2013). Literature has shown further that dual and conflicting roles are a major hindrance to women in leadership positions. Kitele (2013) has found out from the female heads that there is a conflict between domestic and professional roles with the reasons that schoolwork is so involving and interferes with domestic issues which give rise to conflicts. For example, as a child-bearer, the woman is expected to take care of the child and put away her career to meet the needs of her family (Mutabai, 2016;Davidson & Cooper, 1992;Burke & McKeen, 1994). Furthermore, some African cultures define women in terms of what they should be or do for men. For instance, a married woman's major role is to enhance her husband's career goals, by providing him with moral and emotional support, and therefore women can only pursue their professional dreams after fulfilling their culturally accepted roles (Malovi, 2014). Beeghly (2014) has also noted that women's gender identities were embedded in responsibilities for care that extended beyond mothering young children and included the care of husband and adult children and grandchildren. In some cases, women intentionally avoided work outside the home to have time to maintain family relationships. The concept of gender also connotes that the expectation held about the characteristics, aptitudes and likely behaviours of both women and men, and gender roles are learned through the process of gender role socialisation. Boys are generally taught to be masculine (interpreted as active, aggressive, tough, daring and dominant), whereas girls must be feminine, soft, emotional, sweet, and submissive. These traditional gender-role patterns have been influential in the socialization of children (Cornwell & Legersky, 2010). It is a gender role socialisation that leads females and males to behave differently, and the application of the traditional gender roles leads to many forms of differentiation between women and men. Apart from work, these gender roles are so pervasive in society and therefore leads to stereotyping which makes it difficult for males to work under the leadership of females (Alabi, Bahah & Alabi, 2013). --- Support services and strategies used by females to deal with patriarchal challenges in SHSs. In the face of patriarchal challenges to female heads in leading all boys' SHSs, studies have indicated that women's way of leading enables them to deal with some of the challenges they face as female heads. Given equal opportunities and co-operation, women's leadership styles tend to be more transformative and inclusive than that of their male counterparts. This makes females more capable to adopt a collaborative management approach to leadership than men (Aburdene & Naisbitt, 1992) which is preferable for today's schools (Anewu, 2010). This assertion is confirmed by Le (2011) when she said that, in spite of the difficulties with overwhelming huge workloads and domestic duties, women could be proud of their leadership because of the democratic and transformational leadership styles they embrace. This is one way that female heads use to deal with patriarchal challenges to enhance their performance. Mostly, female school leaders use various leadership styles and qualities to navigate their duties. These may include task-oriented, visionary, and participative leadership styles. These are types of leadership where the leader consults with the subordinates and embodies their suggestions in decision making (Okumbe, 1998). Female leaders are often too aware that when they use these types of leadership styles, they help to reduce the subordinates' stereotypes. This view is supported by Atta's (2015) argument that if a female leaders try to be more autocratic, the subordinates are more likely to complain because they expect women to be participative. Delegation of some duties goes a long way to break subordinates' stereotypes of women leadership. This may connote sharing responsibility with work colleagues. Through these types of leadership styles, the female leader can remain afloat in a masculine leadership world. Using their intuitive power, female leaders can transform the SHSs into centres of academic excellence (Kitele, 2013). --- METHODOLOGY The study is underpinned by the nominalist ontological view of reality which argues that social reality has no external existence such that it can be objectively and dispassionately accessed, but rather it is the result of human thinking (Burrel & Morgan, 1979). The study is also influenced by the constructivist epistemological view of reality which states that knowledge is constructed by subjects in their own different ways but not discovered. In line with these theoretical positions, the study adopted the interpretive paradigm which argues that social reality is created jointly through meaningful interaction between the researcher and the participants and in the socio-cultural context of the participants (Rugg & Petre, 2007). Consequently, a phenomenological research design was used to carry out the study. According to Pathak (2017), phenomenological research is a study that attempts to understand people's perceptions, perspectives and understanding of a particular phenomenon which has the primary objective to explicate the meaning, structure, and essence of the lived experiences of a person, or a group of people, around a specific phenomenon (Christensen et al., 2010). The research was conducted in 2 public male SHSs which are headed by females in Ghana where patriarchal culture is rife (the names of the schools and their locations are withheld in order to adhere to the ethical guideline of anonymity). The population of the study comprised of: all females in leadership positions in the 2 all boys' SHSs headed by females; all teachers in the selected boys' schools; and all final year students of the schools. The final year classes were used because they have more experience with the female heads than the first-and second-year students. The population of females in leadership positions in school A was three and school B were also three making a total of six. The population of teachers in school A was 134 and school B was 168 making a total of 302. The population of students in school A was 688 and school B was 946 adding up to 1634 students. The total population for the study was 1942. Out of this, maximum variation type of purposive sampling was used to select 30 participants from the categories due to their rich knowledge about the phenomenon of the study. This comprised 3 females in leadership positions (i.e., Headmistress, Assistant Headmistress and Female Head of Department), 5 teachers and 7 students respectively from each of the schools. The qualification for the selection of teachers was that she or he should have worked under the administration of the current female head for at least three years and above, and have knowledge of the heads' leadership experiences. The third category was students who were school prefects from the final-year class. They were so chosen for their experiences of their status as school prefects working with the female leaders. These students were put into two focus groups of seven students each. The six females in leadership positions and the 10 teachers were interviewed. So, the qualitative data was collected through semi-structured interviews and focus group discussions. Two separate interview guides were developed for each of the two categories of participants, and a focus group schedule for the students. The four components of trustworthiness: credibility, transferability, dependability, and conformability were observed in the conduct of this research. These components respectively ensured: a. accurate identification and description of the problem investigated in the study and also constructive feedback from respondents, b. the presentation of conclusive and vivid information concerning the research sites and rich descriptions of perceptions of selected participants, c. a detailed description of the research process including data collection and analysis procedures, d. presentation of the findings in a way that would facilitate their corroboration and confirmation by others. The data was analysed thematically. The coding was in four levels whereby the salient points were sifted out from the raw data. Cohen et al. (2011) described qualitative data analysis is an activity that involves organising, accounting for and explaining data. The data sets were triangulated to ensure authenticity of the data and to capture different dimensions of the same phenomenon (see Maree, 2010). All participants were told that taking part was voluntary. The researchers ensured the participants of anonymity and confidentiality (by referring to them with pseudonyms like: FT = Female Teacher; ST = Student; FH = Female Head; MT = Male Teacher), and fully informed them about the purpose and context of the study. --- Data Analysis and Discussion The data obtained for this study are analysed and discussed under two main themes: i. Socio-cultural barriers to female heads managing male senior high school The discussion in this section relates to data that was gathered to answer the first research question: "what are the socio-cultural experiences of female managers in the selected male SHSs?" The data revealed that, males are perceived to be in a better position to head boys' SHSs and that female heads are not very welcome in boys' SHSs. Indeed, the data showed that there is discontentedness among some staff concerning a female heading male dominated SHSs and the relevant role that female staff are supposed to play in boys' school. The Interview Respondent FH1, for example, said that, "there are factions within the school that detest females becoming head of the school. This breeds gender bias. However, the head promotes open administration and team work". The data revealed on the other hand that, students of male dominated SHSs are glued to female teachers' more than male teachers, and the boys have much confidence in their female teachers. They see female heads and teachers as surrogate mothers who empathise with their problems. From the FGD, Respondent ST1a said that: personally, I will prefer a female to head a male school than a male because with the female we feel safe. We can get closer to her to share our problems and she is always ready to listen to us because she is a female. With a male head, we feel a bit scared to approach them. We are not sure what the male head will think of us if went to them with our problems -what is he going to think? will he insult or judge me concerning what I am saying? With the female head, we actually feel freer and more open to tell her what worries us. Respondent ST3b concurred with this view: "I prefer a female head because our headmistress is caring. I am imagining that if a male comes, we will be treated like some military people. Even though the female head gives out punishments for offending students, I presume that a male head's kind of punishments will be very hash". These views means that, male students do relate better with female teachers which include female heads. The Interview Respondent FH5 said that, the boys are more comfortable and open up to female teachers especially the older ones than the male teachers. The focus group discussion data corroborated the interview data and indicated from FGD 'A' that, students of male SHSs prefer female to head their school rather than male heads. This suggests that, although female heads may need male assistance, boys cannot do without females, neither at home or in school, and that boys feel at ease in the presence of female heads than male heads. FGD 'B' also showed that boys prefer females to head male SHSs. The Focus Group Respondent ST5b for example said that, "having experienced females as heads of the school right from the basic school prove that females are helpful in leading male dominated schools". The Focus Group Respondent ST3a also said that, … just as boys feel the presence of our mothers at home and share our problems with them. Our headmistress is like a mother to us and I feel comfortable talking to her. Not like our fathers who are so busy and have no time for us. So, I prefer females to head boys' schools in order to feel the presence of motherhood even at school. Interview respondent ST2b said that, In terms of nutrition, at first, we used to eat little quantity of everything but now it has improved. Because she is a mother, she understands and has contributed to the improvement of our diet in school. Therefore, I will prefer a female headmistress in a boys' school and she can be supported by the male teachers. The data is consistent with a view from Ramsook et al. (2016) that women have a critical role to play in preparing boys for life in the 21st century. They see themselves as counsellors, and also believe that as surrogate mothers they have a responsibility to teach boys the importance of respecting women. They want boys to develop a good sense of self, leadership skills, strong moral and ethical values, and a keen sense of responsibility to others. Many of the participants also regard themselves as positive role models for boys. Then again, the data from two male teacher respondents suggested that, male teachers prefer females to head boys' SHSs because of their nice way of addressing boys' issues and their meticulousness in raising students from boys' SHSs. Interview Respondent MT6 said that, "unlike the male heads, females are meticulous in grooming boys. They do not overlook certain things like dressing, combing of hair, use of dormitories etc." Two female teacher participants and one male teacher participant agreed that, male and female teachers prefer either male or female who have the requisite skills to head boys' schools. Interview Respondent FT2 believes that, "the personality of the person in question is of utmost concern because experiences prove that some females can head male schools. However, in boys' schools where the students are known to have strong character, a male head would be preferred". The data further suggested that, majority of male teachers and few female teachers prefer a male to head boys SHSs. The later believe that due to their boisterous nature, male heads can intrude the privacy of male students without asking for permission. The Interview Respondent FT1 for example said that, "a female cannot head male institution in the sense that, unlike females, males are able to deal aggressively with their comales". This view is affirmed by Helterbran and Rieg (2004) that parents and community members believe that males can effectively discipline male students than women. Contrary to the views of male students, the data showed that, issues of gender stereotypes are prevalent among male teachers of boys SHSs., and they behave in gender stereotypical ways that confines the potentials of female heads. Some staff and (about 2% of) students perceived women to be weak for leadership in an all boys' SHS and therefore refuse to take directions from them. The interview Respondent FH5 said that "students do not portray any attitude of gender stereotyping but male teachers do, to the extent that they sometimes challenge the headmistress". The Interview Respondent FH3 added that, "most of the staff and some students perceive that women are weak. For that matter they refuse to heed to instructions from female leaders". The idea that male teachers find it difficult to work with female heads stems from the cultural backgrounds of such male teachers. According to the Interview Respondent FH1 "some of the male staff find it difficult to work with female leaders such that they, will indirectly refuse to do their work or do it haphazardly". The Interview Respondent FH6 said that, "some male teachers have the perception that the female head is just like their wives at home therefore, there is no need to be subordinates to them". Anewu (2010) believes that these attitudes are borne out of males' perception of women as arrogant. The data catalogued a number of labels used to describe women who enter occupations considered to be the preserve of men, such as: "woman tiger", "woman-man" and "iron woman". In spite of these views however, the data presents an idea that gender stereotypes in all boys' SHSs have no sufficient negative effect on the leadership of female heads in such schools because a female head who has the capabilities to head boys' school does not concern herself with issues of gender stereotypes but rather focuses on using every necessary leadership skill to prove her competence. Eddy ( 2009) has argued that female leaders thence have to be tough to overcome these perceived male dominant positions. Interview Respondent FH5 adds that "it is up to the female head to draw close and work with members of staff who are willing to help instead of allowing issues of gender stereotypes to influence the smooth running of her administration" because if left unchecked, these gender stereotypical issues will keep creating socio-cultural challenges for the female leader. The data has revealed that, there are socio-cultural barriers that prevented female heads from taking certain decisions and actions in boys' schools. Consequently, the female head may need the help of male staff to execute certain actions which are socially unethical for a female to do. Such actions indeed may tend to intrude the privacy of the boys. These socio-cultural barriers also inhibit female teachers from teaching some specific subjects. The Interview Respondent FH3 said that such socio-cultural issues tend to create performance gaps for the female head: There are decisions and actions you cannot take, not because you are not capable but because you are a woman. Women cannot do certain things in a male institution as entering the boys' dormitory unannounced. So, when it comes to inspection for example, the female head would fall on the male teachers to do the inspection. On a routine basis, these students think the female teachers including the head should not go into their bathrooms and rooms. However, this is a false notion because, even when we go round on inspection, the men will walk by and will not see some important details that the women will see. Once, I saw rubbish stacked under beds but the male teachers could not see it. Another thing that I noticed when I came to this school was, they preferred men teaching certain subjects like Mathematics, Science and even English Language which is a female dominated area. This wave has died down now because we have more women in this school than before. So also, Interview Respondent FH5 claimed that, Female teachers are not allowed to enter the boy's dormitories. When it comes to the home situation, the boys are closer to their mothers and we have a role to play in their lives. A point in time we were having assistant house mistresses but then the males were having problems with it because they felt it is a male thing so there is no need for us females to take part, so we were left out in the appointments. In spite of these socio-cultural barriers, the data also revealed male teachers' contentment for working under female leaders, contrary to the previous view. According to the data, this is further enabled by the statutes of most public institutions that determines who should be the head of an organisation. Five male teachers said that, once a male staff is able to live with a woman, be it a mother or a wife, he should be comfortable with a female leader. This was supported by three female teachers' assertion that male teachers have no repulsion about working with female leaders. What counts is equality and equity -considering shared responsibility rather than gender in leadership. The data indicated further that some religious beliefs also prevent women from holding leadership positions as they do not allow females to lead them. The data from the focus group discussion refuted the conventional view that, women are vulnerable and incapable of taking leadership positions, and that female heads could head boys' SHSs better than male heads. Experiences prove that women have the innate ability to head and manage institutions such as schools so long as they are able to manage their homes: In Ghana, women are perceived to be vulnerable, soft or second-class citizens. Meanwhile they are those who manage homes. It is without doubt that, so long as they are able to manage homes, they are capable of managing institutions such as schools and ensure development (Respondent ST3a). This affirms the notion that female leaders are very competent to lead boys' schools. They are strict in ensuring discipline and punishing students when necessary. The data showed that, "there is nothing like discrimination against women in the field of education" (Interview Respondent FH1). The embedding idea is that when it comes to the abilities and competencies for leading schools, gender issues do not become a factor. In education, quality and competence is what counts in choosing who should be a leader of a school including boys' schools. The Interview Respondent FH2 said that, "in educational leadership there is nothing like discrimination so long as the person in question qualifies. Rather, the discriminations emanate from socio-cultural backgrounds". Furthermore, the data showed that even where there are traces of discrimination, the heads have used team building or teamwork as a strategy to overcome it. This team effort involves engaging both male and female staff in all activities so that none will feel discriminated. The Interview Respondent FH1 for example said that, "the female head ensures all-inclusive type of leadership such that leadership roles are delegated to the men as well. By so doing, discrimination is reduced". The data further showed that the traditional roles of female heads affected their leadership roles positively than has been previously believed. The findings from four female head participants showed that, the traditional motherly role of the female head is beneficial to them and the students rather than the previously held believe that these traditional roles interfere with their leadership. Their argument is that their traditional roles and experiences as mothers enable them to give the students holistic care, that is -providing needs in terms of academics, extra-curricular activities and socio-cultural skills which are necessary for the upbringing of the male students. The Interview Respondent FH2 said that, "the motherly attribute of the female head enables the students to confide in us. It places no hindrance to our work as a head". This subject was however perceived differently by two female head respondents who indicated that, the motherly role of the female head at home interferes with their administrative work. The Interview Respondent FH6 for example said that, Traditional role as a mother of female leaders somehow interferes with their work in the sense that some of us heads who have children sometimes absent ourselves from school to attend to family issues. This is an issue with those of us who have little ones. Mothers who have grown up children do not have much problem. This assertion is affirmed by Mutabai (2016) who has said that conflicting roles are a major hindrance to women in leadership positions. This is because as the child-bearer, the woman is expected to take care of the child and put away her career to meet the needs of her family. This perspective notwithstanding, three male and one teacher participants said that, female heads do not place family demands over administrative work. Interview Respondent MT1 argued: "the assertion that female heads place family demands over administrative work is untrue. This is because sometimes the female head is able to work till midnight before they attend to any other business" while Interview Respondent FT2 said that, "the assertion that female heads place family demands above administrative work does not hold. Experiences with the female head prove she is always on the job and balances school and family time". Within the context of the data presented so far, the subject of gender discrimination within the realm of school leadership is approached here in a very specific and different way. We do not intend to explore the various normative frameworks that could support equality in the workplace, such as appeals to basic human rights, social contracts, deontological duties or utilitarian concerns. Instead, we seek to bring an understanding to the tacit gender support systems that are inherent in school practices and the embodied effects of such support systems for female leadership. The data has indicated that despite an overt acknowledgement of socio-cultural barriers, women in educational leadership still experience approval and enjoy support from their male colleagues as well as the students they superintend to carry out their duties. In this context, the so-called "glass ceiling" or as the metaphor has recently been recast, the "leaking pipe-line" (Price Waterhouse Coopers 2007), has been sealed significantly by the existence of organisational statutes and policies, as well as attitudes of male employees and loyalty from male students. Consequently, we seek to interrogate these support systems that encourage female leadership and the subtle gendered prejudices and expectations about how women lead that lie at the heart of the challenges many females face in finding their leadership role in schools, with the hope that these subtle prejudices will be acknowledged and work on to re-invent and advance gender spaces for educational leadership futures. The data has shown that these tacit support systems are partly institutionalized in everyday practices and partly structured by male preference and affinity to femaleness of leadership. These eventually shape individuals' embodied existence within the schools, and also embolden some women and some men to unpack the implications that the interplay between gender and organizational practices has for leadership, and then device alternative leadership models and gender inclusive strategies of change to be used in the schools. Within the feminist literature, there have been a number of approaches to understanding the differences between men and women and addressing matters of equality and opportunity which are the key tools for reinventing gender spaces for leadership. So, this paper tries to draw out the implications that each of these approaches could have for leadership futures. This will bring clarity to our beliefs that the origins and manifestation of sexual differences have implications for the thinking that goes into leadership role(s) of women and men in organizations, and certainly the fact that this is a sine qua non for reinventing gender spaces for increased productivity in schools. We make a claim at this point that the subtle traditional gendered prejudices and expectations about how women and men lead embed the challenges that many individuals face in finding their leadership role in organizations. The first of the approaches pertains to the subject of equality. In the leadership realm, the "equality" debate often challenges women to act as men have always acted in leadership or to do better. Consequently, women have had to use leadership practices that pertained to patriarchal organizations in which they find themselves. To achieve these goals for leadership, such female leaders often unconsciously imitate the predominantly male leadership stereotypes, and they end up making a mess of their roles in the sense that the male leadership stereotypes are very uncharacteristic of feminism. So, while equality-feminists succeed in making the argument for equal rights and opportunities, their efforts do not allow women to develop their individual leadership styles, and neither do they challenge existing stereotypes about leadership. Consequently, an alternative approach in feminism is to insist on respect for the differences between men and women, and an appreciation of the unique role that women could play in schools as explicated by the data about the special qualities they bring to all boys' schools. The data concurs with feminists who have adopted this approach that women have their own unique voices or styles that should be included within leadership discourses. From the perspective of the data, it is possible to argue that the unique capacities, traits and predispositions of women are functional in terms of supplementing the gaps that are typically present within the existing school leadership corps such as the need for surrogate motherly role in all boys' schools (see also Ely & Padavic 2007). This approach may be countered as problematic however, because it tends to set up essentialist dichotomies between men and women. Per the data, it shows women to be more caring, more communicative, and more cooperative than men. Rosener (2011) has commented that the International Women's Forum in 1984 used similar data but was seen as further attempt to solidify existing gender biases in their categorization of traits that respondents identified within themselves. In much of these surveys, female traits included being excitable, gentle, emotional, submissive, sentimental, understanding, compassionate, sensitive and dependent. Whereas male traits included being dominant, aggressive, tough, assertive, autocratic, analytical, competitive and independent. Being adaptive, tactful, sincere, conscientious, reliable, predictable, systematic and efficient were considered gender-neutral traits. This essentialist view point can be extended to present an unfavourable picture of female leadership. Gmür (2006) has argued that the unfortunate consequence of this essentialist approach is that women have always been associated with the inferior characteristic of the binary opposition: women are emotional, not rational, women are impulsive, not goal-directed, etc. His empirical studies suggest that most respondents regard the various stereotypical male leadership traits as typical of the behaviour of a "good manager". In that study, out of the number of ideal managerial traits, only two "feminine" traits are considered desirable for managers, i.e., being "adept at dealing with people" and "cooperative." All the other ideal traits, like being analytical, competent, confident, convincing, decisive, efficient, foresighted, independent etc. are associated with the male stereotype (Gmür 2006). So, these prejudices have been uncritically absorbed into the leadership discourses, and have led to the claim that feminist ethics essentially pursues "care ethics." Borgerson (2007) has commented on the problematic conflation between feminist ethics and care ethics within the organisational ethics literature. She argues that ethics textbooks like that of Crane & Matten (2004) describe "care ethics" as a feminine approach that solves ethical problems through intuition and personal subjective assessment. Even though Borgerson does not deny that certain articulations of care ethics display feminist concerns, she argues that the association of care ethics with feminism tends to essentialize the gendered experience, and hence, a proper understanding of the causes of gender prejudices and marginalizing practices is never developed. She also points out that there are other "caring" ethical approaches, which are not at all feminist in orientation, such as that of Emmanuel Levinas and other philosophers working on what can be described as an 'ethics of proximity'. These debate notwithstanding, the data has been emphatic about the relevance of female traits to leadership in boys' schools and this makes a great case for creating gender spaces for educational leadership futures. Orbach (2023) has also on another hand described the masculine traits of leadership as toxic masculinity and has consequently called for more deeper thinking about the phenomenon. She has argued vehemently that toxic masculinity has a certain usefulness and punch as a phrase because it expresses what some men put out into the world but it does not address the whys deeply enough. She has explained that until recently, and still to this day in many parts of the world, men are raised to be protectors -fighters and economic providers. She has argued that conscription (which refers to men being trained to kill) ended even in Britain only recently in 1960. Women, meanwhile, were being raised to be nurturers and carersthat is, to be midwives to their needs, to support their initiatives, whether or not the women worked also outside the home. Furthermore, the social systems that emerged as a result ensured that men were to be receivers of emotional support, and women to be receivers of economic support and "protection". However, the 1970s saw the beginnings of enormous changes between women and men, which has led to today's expanding notions of gender, which the paper sees as opportunity for reinventing gender spaces for educational leadership futures. --- Support services and strategies used by females to deal with patriarchal challenges The data presented and analysed in this section sought to answer research question 2 regarding the support services and strategies that female managers use to deal with the patriarchal challenges in the selected male SHSs as contribution to efforts to reinvent gender spaces for educational leadership futures. The support systems and strategies used may be categorised into: --- External support services for female heads The data showed that the successes of female heads in the all-male SHSs have made substantial achievement as a result of the support systems available. For example, the Ghana Education Service's (GES) policies are not gender biased which means that positions come with requirements that do not recognise the gender divide. These policies are open to both males and females except for the conventional maternity leave reserved for females. Interview Respondent FH6 said that, "there is nothing like special support specifically for females in leadership. Rather, there are equal opportunities to both male and female in management". The Interview Respondent FH5 added that, "except for maternity leave, all policies from GES are open to and cater for both male and female leaders". Such systems prevent female heads from sustaining needless gaps and stress in their careers that may tend to weaken their position and slow down their effectiveness as school leaders. The teacher participants also indicated that, the best support system available to female leaders to discharge their duties comes from the school and its staff. These encompass proximal accommodation, her office, adequate support from Housemasters, Board of Directors and old boys. The Interview Respondent FH2 said that, "there is a housing facility for the female head on campus" while the Interview Respondent FH3 said "House Masters work hard to support her". The above notwithstanding, the data revealed that female leaders are not given any special training to lead boys' schools. Interview Respondents FH1, FH2 & FH3 shared that there is no special training for female leaders to facilitate their duties in all-male schools. --- Internal support services for female heads The data obtained from female head showed that, female heads feel secured around males. In the patriarchal context, female heads feel much secured when men are around. Interview Respondent FH1 for example said that, "there is security … and no threats so long as the staff and the students are concerned". Again, the data showed that, the presence of people and respect from them provides security. Another way of ensuring security for the female head was described by Interview Respondent FH2 as "some male teachers make certain vital information available to me before any major happening takes place in the school. Such practices make the female head feel secured". The data again showed that support is given from parent of students and alumni which are very crucial to female headship and the entire school. The support from parents and alumni manifests in the commissioning of supplementary projects and services to those from government in the schools. The Interview Respondent FH1 said that "though government does not demand for parents' supports, the parents and the alumni provide financial support for the beautification of the school". The data from six male teacher participants indicated their support for the female leader, which confirms the notion that, a well-organised institution unearths the zeal of the staff to support leaders. In this circumstance, most members of staff are willing to find the opportunity to render support to female leaders in a well-structured environment. According to the Interview Respondent MT1, "teachers follow the rules and the regulations in the school. They also ensure that students are at the right place, at the right time. We follow duty rosters to enable the various leaders to contribute their part to the headmistress's administration". The Interview Respondent MT3 also said that, "some staff take up duties willingly". So, staff adherence to the code of conduct of the school is a great support to female heads which is complemented by picking up various roles (both academic and non-academic) in the school. The focus group discussion data from students corroborated the interview data regarding the support services the school provide for female leaders. This data set revealed that, provision of basic needs for female heads boosts their productivity. The school provides the basic needs of the female head in terms of shelter, security, transportation, sense of belonging and respect. The Focused Group Respondent ST3a emphasised this view that, "the school has provided the headmistress with a car, driver and security to make her work much easier". --- Policy direction for support provision for female leaders The data further gave indications for policy direction regarding gaps in the support provision for female leaders. The female heads indicated that, periodic training sessions is a key gap in the support services available to them, and that such training sessions will help to reduce the leadership challenges they face. The idea is that such periodic in-service trainings will boost female leaders' morale to face the challenges and manage activities competently. Interview Respondent MT6 claimed that, "the GES must organise counselling and training programmes on how to handle patriarchal challenges for female heads in male institutions". Mutabai (2016) confirms this view with his claim that, top management support is an important factor that contributes to women's career success. These views show that organisational policy interventions have the tenacity to contribute to the success of female leadership. Interview Respondent FT2 said that, "newly appointed female heads must be taken through orientation by the previous head before they assume work. Also, the new female head ought to consult the former head for guidance. She ought to consider the view of others and improve human relations". The focus group discussion revealed that, the success of a leader lies with the staff because the female heads cannot lead in isolation of help from staff. Hence the female head within the context of organisational statutes must be encouraged to delegate responsibilities to the staff. The focus group respondent ST1a said that "… the head must be supported in making and implementing decisions" while the Focus Group Respondent ST1b said that, "Staff must support the head in enforcing and checking discipline". Again, the data indicated that, acceptance from students is vital to the administration of female heads. Inasmuch as female heads may not work directly with students, it is important she receives their acceptance. "Students make the head feel comfortable and accepted" (Focus Group Respondent ST1a). --- Strategies used by Female Heads to deal with Patriarchal Challenges The data further indicated some strategies that female heads may use to deal with the patriarchal challenges they face. The female head participants revealed that, leadership does not thrive on hearsays and therefore any information that comes to the leaders' table must be checked before it is acted on. This enjoins female heads to be discreet and remain composed about information made known to them. Interview Respondent FH1 said that, "the head must not act based on what people say. She ought to portray positive attitude towards everything she faces. She must foster team work and give no room for divisions. She ought to investigate issues properly before she acts on them". The data showed that, female heads are references for reinforcing good attitudes among staff. This means for example that, one cannot declare war and have peace, therefore in order to enjoy the peace they seek, they should be ready to harness peace. Thus, it is incumbent on female heads to create for themselves and their staff a conducive working environment devoid of tension. So, Interview Respondent FH5 said that, as female heads, we should foster cordial relationship among everyone especially the male staff who feel they are in the best position to occupy headship position due to experience and age. In such cases, I give them certain responsibilities to make them feel part of the administration. The Interview Respondent FH4 added that, "female heads must avoid tension and seek to be nice to everyone". Again, the female heads indicated that, subordinates complement female headship, implying that a leader cannot do all the work alone. Subordinates may hold the other half of the missing pair of the solution being sought. Female leaders therefore ought to delegate roles to subordinates and coordinate and monitor their timely outcomes in relation to set goals. Set targets must be communicated thoroughly, respected and adhered to by both female leaders and subordinates. Atta (2015) has argued in corroboration with this finding that if a female manager tries to be more autocratic, subordinates are more likely to complain because they expect women to be participative. Delegation of some duties goes a long way to break subordinates' stereotypes of women leadership. This will involve sharing responsibility with work colleagues. Other studies by Elisha and Edwards (2014) affirmed that the success of their schools was dependent on the female head delegating responsibilities, especially when working with males that come from a patrilineal background. They felt that by delegating tasks, men gained some legitimacy in their roles and it helped them to feel that they could contribute to some area of leadership within the school. The teachers indicated that, fun activities ease tension amongst female heads and staff, so it is important to engage in periodic fun or tension releasing activities which in the long run tend to foster healthy relationships among people in the school. Thus, the quest to live cordially with staff, motivate them and strive to get them involved in leadership by creating spaces for their uniqueness and individuality, while spending quality time with them outside work hours tends to ease challenges of patriarchal culture. According to Interview Respondent MT4 "the female head ought to ensure cordial relationship amongst staff, tolerate staff for their unique characters and not to victimize those who pose problems". The Interview Respondent MT1 added that, "the female head ought to be a motivator and a team player. There must also be a time out of work for refreshment". Again, the teacher participants indicated that, female leaders ought to shun dictatorship. This means that, subordinates prefer and are open to leaders who involve them in their leadership rather than those who do not listen but impose their decisions. The Interview Respondent MT5 claimed that, "the female head must become a servant instead of being bossy. Also, she must not create any scenario of gender discrimination but rather follow the rules". The data further showed that, staff and students need counselling and orientation on female headship in a patriarchal context so that they can render the maximum support needed. Interview Respondent FT1 argued that "there must be counselling sessions or annual retreats for students and staff where they would be educated on the ideal that females are equally capable of leading". The data further revealed that, it is important for female heads to pay attention to their professional development in order to develop skills for competency as confirmed by Interview Respondent FT3 that, "as a leader, the female head must build herself and also ensure cordial human relationship for teachers and students". The data again shows that, empowered staff are complements to female heads. A leader who involves staff in duties eventually replicates another leader who can act on their behalf when indisposed. Female heads should therefore be instruments for staff empowerment based on their potentials. Interview Respondent FT4 indicated that "the female head must empower the staff and involve them in the administration by giving them tasks apart from teaching, considering their strength, weaknesses and talents". The data indicated that, patriarchs and matriarchs are reference points for leadership so female leaders ought to consult their predecessors and local education institutions while working collaboratively with their staff. The data explains that female leadership practices should not be characterized by masculinity as some women leaders tend to behave in very masculine ways to prove their competence for the job. The focused group discussions converged with the interview data on the subject of building good working relationships. This data set agreed that most subordinates tend to feel comfortable around leaders who come down to their level to interact with them, as argued by Focus Group Respondent ST1a that, "in order to ensure cordial relationship, the female leaders ought to be meeting the students intermittently to open up issues to them and to hear from the students as well". Again, the data showed that, female leaders are to show bravery in order to lead boys' school. Women are known to be soft. However, each position comes with its own required attitude and posture. For example, boys need to be brought up in a way to prepare them to meet the rigours of life. This cannot be done by the natural soft and pampering posturing of women. Thus, female leaders need to be trained to live up to the difficulties that boyhood impose. Respondent ST1b said that, "students, especially boys need hard training to enable them to cope with difficult times in life. Therefore, the female heads must be trained to suit such task". So, female heads must be trained to be both flexible and firm to stand the pressures of patriarchy. The data consequently indicated that, diverse opinions are good for female leadership. However, when it becomes a habit, it makes one looks weak and not firm as a leader. So female heads should maintain a good balance of consulting others especially men, but they also ought to be firm in taking decisions. Respondent ST1b confirmed this view by saying that, "though the female head would have to consult others in decision making, she must however, be firm in taking decisions". From the point of view of policy directions as prescribed by the data, we want to examine whether it is possible to transform leadership theory and practice through an engagement with the variety of ways that have been recommended for both men and women to approach their leadership roles and how these will inure to reinventing gender spaces for educational leadership futures. What seems to be required is leadership models that allow individuals to lead in their own unique ways, instead of conforming to some pre-conceived gender expectations as discussed earlier. We therefore explore the theoretical models of leadership that may create a framework for gender spaces through understanding and adopting uniquely individual leadership styles. In the process, we shall recast important leadership notions, such as "authenticity" and "vision," in more genderinclusive terms for educational leadership futures. Werhane and Painter-Morland (2011) have related recent developments in relational leadership and complexity leadership to the way women lead in organizations. They emphasise that even though complexity leadership seems to describe leadership styles that are associated with the socially constructed "feminine" style of leadership, it is a model that suits many men's leadership preferences as well. These discourses make it relevant for us to explore at this point, and reconstruct a new model of leadership for future growth of educational organisations. Such a model draws on systemic leadership, which is not necessarily restricted to individuals appointed to positions of authority. It is rather an important departure from the 'great man theories' of leadership, and their associated sexist assumptions. Systemic leadership is informed and supported by a variety of discourses that range from Peter Senge's work on organizational learning and change (1999) to Karl Weick's sense-making theories (1993; 1995). The basic assumption of systemic leadership is that an organization cannot properly learn, change or create meaning without the sharing of information and cooperative agreements. In this sense, Senge and Kaufer (2000) speak about "communities of leaders," while others make reference to "distributed leadership" (Friedman 2004), or relational leadership (Maak & Pless, 2006). An influential definition of systemic leadership is provided by Collier and Esteban (2000) who describe leadership as "the systemic capability, distributed and nurtured throughout the organization, for finding organizational direction and generating renewal by harnessing creativity and innovation." Understanding leadership as an emergent, interactive and dynamic phenomenon allows one to distribute leadership responsibilities and privileges throughout an organization's workforce (Edgeman & Scherer, 1999). Systemic leadership therefore involves a number of different leadership dynamics. Uhl-Bien et al. (2007) explain these leadership dynamics as 'administrative,' 'adaptive' and 'enabling' leadership. Administrative leaders play the more formal leadership roles of planning and coordinating organizational activities. It is important to note that though systemic leadership functions are understood in more distributed terms, this does not necessarily mean that formal leadership positions and hierarchies become redundant or have to be disbanded. Indeed, it is very important that gender-sensitivity is encouraged through main managerial responsibilities like performance targets setting, conduct of performance reviews, and engaging in mentoring activities. So, it is necessary for people appointed to formal leadership positions to be gender-sensitive and actively play a role in thinking through the gender repercussions of the decisions they make in the organisation. Furthermore, the role of administrative leaders connotes real change in practices and belief systems which requires the acknowledgement and nurturing of other leadership roles. This sets the platform for 'adaptive' leadership functions that creates a 'collaborative change movement' that enables adaptive outcomes to emerge from multiple sources due to the dynamic interactions of interdependent agents. Consequently, the direction and priorities that focusses the organization's efforts and activities develop unconsciously as an unanticipated and unexpected consequence of the routine interactions between many different members of the organization rather than stemming from the top of the managerial hierarchy. This approach to leadership creates spaces that enable all members of the organization to take initiative and responsibility (show of leadership) as and when the situation calls for it. These spaces permit the staff to garner their innate strengths and abilities to lead in their own and unique ways. In essence, these features of adoptive leadership show logically that this model is opposed to stereotypical leadership behaviours. It rather calls for unique responses that are suited for specific situations and set of relationships. In this respect, it creates spaces for women leaders to grow their own unique style of leadership. The third leadership dynamic is what Uhl-Bien et al. (2007) refer to as that of 'enabling leadership', which provides the catalyst to facilitate the emergence of adaptive leadership within organizations. It often involves a complex interplay between administrative and adaptive leadership. Enabling leadership usually require some form of authority, but it entails an active involvement in the boundary situations that organizational members are faced with. Enabling leaders tend to engage in cooperative strategies, foster interaction, supports and enhances interdependency and stimulates the adaptive tension that creates the gender spaces for the emergence of new patterns of leadership. The data has shown, and this is corroborated by Uhl Bien et al. ( 2007) that all three leadership roles necessarily coexist within the two schools. The question that remains however is how adaptive and enabling leaderships can be acknowledged, recognized and rewarded within these educational organisations. Nevertheless, the systemic leadership model is important because it provokes discourses to rethink certain leadership stereotypes that are often uncritically perpetuated within organizations and are inimical to leadership development. This model provides the raison d'etre for rethinking authenticity in the context of educational leadership futures. The concept of 'authenticity' is here connected with the consistent way in which an individual acts in accordance with his or her personal traits and beliefs. However, this can lead to some measure of inflexibility that makes the individual incapable of adapting to different or emerging situations and relationships in practice. Systemic leadership in this context calls for another understanding regarding leadership roles due to the fluid nature of leadership responses. This view is very much discussed in contemporary leadership literature. Porras et al. (2007) discusses the issue so succinctly thus: great leaders are too aware that over time, their role may change in a manner that, the person who takes direction from you and falls under your supervision today, on another day, may become your boss. This same individual could even become your client over time. These issues make it necessary to preserve organisational relationship as a kind of 'virtual team' even as roles change (see Porras et al., 2007). This calls for authentic relational responsiveness, connoting that in order to be authentic, individuals have to respond appropriately and realistically to the substantive situation. This logically calls for the awareness and acknowledgement that reality in terms of the relational dynamics between people in an organizational context is not static. It is always complex and dynamic. The data has shown that both students and staff do not want to see their female heads mimicking stereotypical male leadership styles, or conforming to tacit expectations regarding how leaders ought to talk, walk and make decisions. Female leaders who do that are perceived to be 'inauthentic'. The irony associated with this phenomenon is that women are condemned whether they do it or not. If they conform to the male leadership stereotype, they are seen as inauthentic, and if they do not, their leadership is either not recognized at all, or considered inferior to that of men (Eagly & Carli 2007). This provides the rationale for re-examining the meaning of authenticity. The point is that women can respond quite authentically to the tacit expectations that embed one situation and resist these same expectations in a different situation. These experiences do not express a lack of authenticity. It is rather mirror's the institutionalized prejudices that constantly face women, and the strategies that individual women adopt to deal with them. So, it is imperative for organizations to pay attention to these issues in order to get the understanding of the tacit practices of discrimination that inform the relationships between their staff, and to look for ways to change them to reshape educational leadership futures. From the purview of educational leadership futures, it is necessary for individuals to draw on their own strengths, sensibilities and perspectives as well as using their own unique styles to navigate their leadership roles as tool for reinventing gender spaces. Intersectional approach to policy for reinventing gender spaces for educational leadership These exigencies for systemic leadership make a case for integrating intersectional theory in policy making that seek to reinvent gender spaces for educational leadership, and it is directed at one key question: just how interconnected are inequalities across different sites of social and organisational life in these all boys SHSs? According to Crenshaw (1991), the focus of an intersectional approach to policy making is to highlight the importance of recognizing multiple grounds of identity when considering how the social world is created. For the purposes of this paper, the 'intersectional approach' can be best understood as a way of identifying, understanding and tackling structural inequality in the schools' context that accounts for the lived experience of female leaders with intersecting identities. For example, intersectionality helps us to understand how female heads experience leadership in the 2 male schools, as a result of their identities and unequal power dynamics. Understanding these differences facilitates the development of more effective policies that tackle structural disadvantages experienced by these female school leaders, and help to reinvent spaces for female leaders' collaboration with their male staff for effective leadership. A key feature of an intersectional approach is that it does not give a higher status to any one inequality or experience of discrimination. Hankivsky et al. (2014) have claimed that: intersectionality encourages critical reflection that allows researchers and decision makers to move beyond the singular categories that are typically favoured in equity driven analyses (e.g., sex and gender in sex and gender-based analysis) … to consider the complex relationships and interactions between social locations. Scott-Villiers and Oosterom (2016) have said that adopting an intersectional approach in policy making also calls for policymakers and analysts to "analyse their own power dynamics as much as the world they wish to change". This means that the intersectional approach is not just about considering the experiences of those at the intersection of multiple characteristics but, it is about policymakers and analysts assessing their own experiences and how this impact on their ability to develop, deliver and evaluate policies in an equitable way. Furthermore, the intersectional approach in policy making requires evidence to be adduced for the context, including the historical and contemporary structures of inequality in wider society, and within local contexts (Christoffersen, 2017). The local contexts for the female school leader may include, the school, the District Education Office and the community in which they live and work. So, it is important to examine the dynamic interaction between female school leaders and institutional actors such as the Ghana Education Service (GES) staff in the district and the schools as these provide a more comprehensive examination of policy direction for reinventing gender spaces for educational leadership futures. Hankivsky (2012) has outline a number of useful approaches towards the application of intersectionality in the policymaking process. Recent years have seen criticisms from academia and gender activists that gender inequalities still persist in public spaces in Ghana, and the approaches used so far for leveraging gender inequalities in the country have been limited to the use of a separate single characteristic approach to policymaking. Hankivsky (2012) believes that such phenomenon necessitates the adoption of intersectional policy making approach which explores major cross-cutting policy agendas aimed at reducing gender inequality to reinvent gender spaces for educational leadership futures. To achieve this, policy makers will have to use the intersectional approach to analysing the genderleadership problems and developing solutions for them. Equally important in this regard are the opportunities to use the approach to also monitor and evaluate the resulting leadership futures outcomes. --- Concluding with Accelerating the Shift to Reinvent Gender Spaces This paper has argued that the origins of discriminatory practices in educational organizations lie hidden in everyday practices, habits and interactions. This emphasise that gender stereotypes are alive and well in such organizations, and that addressing the prejudices is fundamentally a difficult task. In the first place, one has to acknowledge the ingrained social practices and beliefs about the capabilities of both men and women, which play a role from a very early age and are solidified in the workplace. To address these prejudices, society has to start rethinking the feedback and advice it provides to children and students in the course of their early development and education on this subject. Furthermore, organizations have to also create new role models and look for mentors who have found their own unique leadership styles, while realizing at the same time that society and its embedded systems are constantly shaped and reshaped through thoughts and everyday workplace practices. These ideas will lead to creating spaces within which different types of leadership practices could emerge. The analysis has shown that systemic leadership models allow for a variety of leadership roles and styles to coexist in an organization. The difficulty however pertains to acknowledging these various roles, and making sure that they are duly recognized, accommodated and used. Surmounting this difficulty will result in unearthing a lot of inspiring stories about people's authentic responses to organisational challenges, and also realise how both men and women intuitively come across visionary ideas and practices in and through their engagement with others. This will thrive in organizational environments where workers are free to become the kind of leaders that infuse their organisations with creative new solutions and practices. This plausibility of constantly becoming a new kind of leader will enable both men and women to explore the full dimensions of their innate capacities, and enable them to serve their organizations, themselves and the broader society to the best of their multiple capabilities. Based on the data and the arguments put forward so far, our concluding contention is that, we can usefully focus on three aspects of gender spaces to continue to address the leadership issue of gendered inequality in innovative and more fruitful ways. These are: to further the contemporary debate and emphasis on intersectionality in relation to gender inequality; to highlight the increasing academic focus on masculinity and gender relations; and to rethink the roles males can play to achieve more successes for advancing female leadership futures. Thus, in addressing this gendered inequality issue in more innovative ways, it is useful to advance the contemporary discourse and emphasis on intersectionality in relation to gender inequality and to highlight the increasing academic focus on masculinity and gender relations and its link to feminism. This strategy for addressing the issue will tackle the challenges of gender spaces by getting to the structural and institutional causes of inequality. One key method to do this is the acknowledgement of many, interconnected inequalities, as well as having an openness to work with diverse kinds of partners in a variety of ways, especially males. Consequently, Ghana's policy makers, academics, and gender activists will be showing a positive sign towards building good gender spaces by constantly thinking through the possibilities of an intersectional approach in different contexts, despite the complex issues this raises. We have argued with evidence from the data that there is in the making, an educational leadership shift within the context of misogyny. But this is happening more slowly than is necessary due to what the data pointed out to be the embodied and institutionalized roots of the socio-cultural barriers in the workplace. There has been an unexamined assumption or perhaps a mantra that lies at the heart of this shift -the idea that females in leadership positions in the educational sector have been receiving quantum support and collaboration from their male colleagues at work, and this is a necessary condition for productive female leadership futures. Thes slow pace of this shift further shows that simply placing women in leadership positions is not enough to re-invent gender spaces for educational leadership futures in Ghana. Social attitudes matter a great deal. If female leaders are treated with social disdain, and if derision and hostility lower their status despite their title, women will be deterred from their jobs. We therefore conclude with some recommendations to speed up the culture change that will propel women into shared leadership with men and sustain the needed shift. These are: a. Speaking out together: More male leaders need to take responsibility for driving this changeand women must help by welcoming males into the debate by connecting male and female leadership networks. b. Active intervention: organisations need to engage in active interventions such as using quotas or targets to force change where resistance is greatest. c. Transparency: Transparency is a powerful stimulus to change, and this calls for clear data that no none can dispute to make arguments for change to be accepted. So, the paper concludes with a view that the study of gender spaces for leadership in relation to gender inequalities, relations, and experiences must continue with the relatively recent exploration of intersectionality if the theoretical analysis of leadership futures is to be enriched to reinvent the concomitant gender spaces. We seek to emphasise that, to set the agenda for a more equal leadership futures, society and organisations will need to link gender much more closely to other social inequalities found in religion, culture, society and organisations. In order to achieve all of the above, Kaloski-Naylor (2017) reminds us that "… we need wider visions of resistance, ways out of the 'to and fro' of arguments which seem to move us closer to disaster. This is what thinkers can offer…." Kaloski-Naylor's view enjoins academics, practitioners, and activists continue to find new ways of speaking to each other on the issue of gender inequality in the effort to reinvent gender spaces for leadership futures. In so doing, as we corroborate with Robinson (2017) to argue that, the boundaries between academia and academics, civic and political institutions, and those who construct knowledge outside of such institutions, including activists in everyday life, that have become more fissured will have to be blurred by necessity.

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Travelling for abortion services in Mexico 2016–2019: community-level contexts of Mexico City public abortion clients

Objective To describe the community context of women who travel to access Mexico City's public sector abortion programme and identify factors associated with travelling from highly marginalised settings. Methods We used data from the Interrupción Legal de Embarazo (ILE) programme (2016-2019) and identified all abortion clients who travelled from outside Mexico City. We merged in contextual information at the municipality level and used descriptive statistics to describe ILE clients' individual characteristics and municipalities on several measures of vulnerability. We also compared municipalities that ILE clients travelled from with those where no one travelled from. We used logistic regression to identify factors associated with travelling to access ILE services from highly marginalised versus less marginalised municipalities. Results Our sample included 21 629 ILE clients who travelled to Mexico City from 491 municipalities within all 31 states outside Mexico City. The majority of clients travelled from the least marginalised (81.9%) and most populated (over 100 000 inhabitants; 91.3%) municipalities. Most (91.2%) ILE clients came from municipalities with adolescent fertility rates in the bottom three quintiles. Clients with a primary or secondary education (vs high school or more) and those from a municipality with a high adolescent fertility rate (top two quintiles) had higher odds of travelling from a highly marginalised (vs less) municipality (adjusted odds ratio (aOR) 1.46, 95% CI 1.35 to 1.58 and aOR 1.89, 95% CI 1.68 to 2.12, respectively). Conclusion ILE clients travel from geographically and socioeconomically diverse communities. There is an unmet need for legal abortion across Mexico.

INTRODUCTON In Mexico, abortion law is determined at the state level and access to legal abortion is available only under narrow indications in 30 of Mexico's 32 states. 1 In 2007, first-trimester abortion was decriminalised in Mexico City, followed by Oaxaca in 2019. The Mexico City Ministry of Health (Secretaria de Salud) operates a public sector first-trimester abortion programme, known as the Interrupción Legal de Embarazo (ILE) programme. Abortion services are available to anyone who presents for care at no cost or on a sliding scale for residents outside of Mexico City. 2 3 Since 2007, the ILE programme has provided over 225 000 first-trimester abortions and approximately 30% of clients have travelled from outside Mexico City, with little change in this proportion over time. 3 Previous work showed that ILE clients who were unmarried, with less than a high school education, and who resided outside of Mexico City experienced difficulties travelling to ILE facilities. 4 Evidence also shows that access to abortion under legal indications, or 'causales', remains very limited --- Key messages ► Clients travel for abortions from all Mexican states to Mexico City indicating unmet need for abortion services. ► Women from more vulnerable communities are not travelling to Mexico City to obtain public sector abortion services. ► Abortion law allows access to safe abortion in Mexico City but creates disparities in access to safe abortion services for women in vulnerable communities. Original research in public facilities outside of Mexico City, 5 6 making travel for services an important research focus. Little is known about the community contexts ILE clients come from. Previous work has either used very large geographical units (regions or groups of states) 7 or has focused only on the Mexico City metropolitan area 8 ; it suggested that those who could travel to access services had higher levels of education than the average population in their home geographical area. The geographical distribution of ILE clients at the community level is unknown, as are community-level characteristics of places ILE clients come from and places with no ILE clients. Community-level marginalisation influences healthcare access 9 and varies at the municipality level, with higher marginalisation observed in the south and in rural areas. 10 The purpose of this study was to describe individual and community (municipality)-level factors among those who travel from outside of Mexico City to obtain abortions in the ILE programme. We hypothesised that (1) clients who access ILE services come from geographically and socioeconomically diverse municipalities, (2) that municipalities that are home to ILE clients are different from municipalities with no ILE clients on key markers of socioeconomic status and (3) we further explore (individual and contextual) factors associated with travel for abortion services from more marginalised compared with less marginalised municipalities. --- METHODS --- Data and variables We conducted a retrospective study using publicly available individual records from the ILE programme 11 and publicly available municipality-level data from the census. Our data include all individual-level client records from all 14 ILE sites that provided services from 2016 to 2019. In this analysis, we include only individuals who reported living outside of Mexico City (32.5%; 21 629/66 462). We leverage publicly available municipality-level data to provide community contextual information for individual ILE clients. A municipality is a second-level administrative division (below a state) that varies in size and is similar to a county in the United States. 10 In 2010, the last available national census at the time of the study, there were 2457 municipalities in Mexico, including the 16 municipalities in Mexico City. Each municipality has a unique code; using the client's municipality code, we merged in municipality-level information from the most recent available census (2010 complete or 2015 intercensal survey) acquired from multiple publicly available sources (online supplemental table 1). Thus, if two clients came to the ILE programme from the same municipality, they were both assigned the same value for each municipality-level variable. Nearly 12% of clients (2882/24 511) were missing a municipality code value and were excluded from the study because we do not know where they travelled from. The majority of excluded clients travelled from the central region (87.8%) as determined by their state of residence, but otherwise there were no patterns in missingness of municipality data (online supplemental table 2). Our outcome is municipality-level marginalisation from the census, merged into individual ILE records. In Mexico, community marginalisation is measured by a marginalisation index, 'grado de marginación', a standard measure used by the Mexican government 12 that includes composite measures of education, income, household materials, and the proportion of the population that is rural (<2500 inhabitants). This index is divided into quintiles where higher values indicate higher marginalisation (more vulnerability). We also created a binary variable indicating higher marginalisation (top four quintiles) versus low marginalisation (the bottom quintile). We chose these cut-offs based on the distribution in the data where the majority of clients (81.9%) came from the least marginalised municipalities (bottom quintile). At the individual level, we extracted additional data from the ILE client record. We included age (12-17, 18-24, 25-29, 30-39, 40+ years; REF 18-24); we chose to cut-off our adolescent category at 17 because women aged under 18 years must have parental or legal guardian consent. 13 We included education level (primary, secondary, high school, university); marital status (single, married/cohabitating or divorced/ widowed); occupation (ama de casa: works at home/ unemployed, employed or student); number of pregnancies (1, 2-3, 4+); and municipality and state of residence. We created a variable to classify states into regions (North, Central, South). We included the municipalitylevel adolescent fertility rate, divided into quintiles and also collapsed into a binary variable indicating high (fourth and fifth quintiles) or moderate/low (first through third quintiles). This binary variable represents values above and below the median. We also included the following commonly used indicators of municipality socioeconomic status: whether <2% of the population aged 3 years or older spoke an indigenous language; if >75% of households owned a washing machine; if >30% of households had in-home internet; the proportion of the female population with at least 9 years of education; if <40% of adolescents in the municipality did not attend school; and if >30% of the female population was economically active, defined as females aged 12 years and older who worked or looked for work in the reference week. We created these binary variables based on data distributions (cut-off at the median) except for 9 years of schooling for females, which represents the national minimum standard in Mexico. 14 We calculated proportions using the relevant population denominators (online supplemental table 1). We also Original research included an indicator of whether the municipality had an Adolescent Friendly Service Center, which provides adolescent-specific sexual and reproductive health services within Ministry of Health facilities. 15 Analysis First, we described the ILE clients' individual characteristics. Next, we described the binary municipality-level characteristics of socioeconomic status by whether ILE clients travelled from the municipality or not. We calculated municipality-level averages for the municipalities where ILE clients travelled from (n=491 municipalities) and did not travel from (n=1950 municipalities outside Mexico City) and used bar graphs to compare the proportions. Next, we created a heat map of the number of ILE clients that travel from each municipality collapsed into categories (0, 1, 2-100, >100). Finally, we built a logistic regression model to identify individual and contextual factors associated with presenting for abortion services from a highly marginalised municipality (top four quintiles) compared with a municipality of low marginalisation (bottom quintile). We included individual age, education, marital status, and parity as well as municipality-level adolescent fertility (dichotomised as highest two quintiles vs bottom three) and region. We used Stata version 16 (StataCorp, College Station, TX, USA) for all analyses. This study was deemed non-human subjects research by the Oregon Health & Science University IRB. --- RESULTS Of the 21 629 clients who travelled from outside Mexico City between 2016 and 2019 to access legal first-trimester abortion services in the ILE programme, the majority travelled from the least marginalised (81.9%) and most populous (more than 100 000 inhabitants; 91.3%) municipalities. The largest age group was 18-24 years old (46.5%); had a high school (45.5%) or university (20.3%) education; and reported to be single (58.1%) (table 1). The majority of ILE clients who travelled to Mexico City were experiencing at least a second pregnancy (62.3%). ILE clients primarily travelled from the central region (94.2%). They travelled from 491 of 2441 (20.1%) municipalities within all 31 states outside Mexico City. The majority of clients (91.2%) travelled from municipalities with the lowest adolescent fertility rates (lowest three quintiles; table 1). Figure 1 shows the difference in municipalitylevel socio-economic characteristics between the 491 municipalities from which ILE clients traveled, and the average levels from the other 1,950 municipalities outside Mexico City with no ILE clients. For example, 62% of the municipalities that ILE clients traveled from (orange bar) had adolescent fertility in the lowest 3 quintiles compared to 56% of those where they did not (grey bars). Figure 1 In our multivariable logistic regression model, ILE clients who had a primary or secondary education (vs high school or more) had larger adjusted odds of travelling from a highly marginalised (vs less) municipality (adjusted odds ratio (aOR) 1.46; 95% CI 1.35 to 1.58), controlling for individual factors, municipalitylevel adolescent fertility rate, and region (table 2). --- highlights that ILE clients travelling from municipalities with adolescent fertility rates in the top two quintiles (aOR 1.89; 95% CI 1.68 to 2.12) and municipalities in the southern region (aOR 2.98; 95% CI 2.58 to 3.45) had larger odds of travelling from a highly marginalised versus a less marginalised municipality (table 2). --- DISCUSSION We present novel data on the geographical distribution of ILE clients at the municipality level, and the individual and community context of women who travelled from outside of Mexico City to obtain abortion services at the ILE programme. The majority of ILE clients came from the least marginalised and most populous municipalities with lower adolescent fertility rates. Generally, the municipalities that ILE clients travelled from were on average better off than other areas of Mexico on several measures of socioeconomic status. Clients who had a primary or secondary education and those who came from a place with high adolescent fertility had larger odds of travelling from a highly marginalised municipality compared with a municipality of low marginalisation. Our findings show that ILE clients come from all corners of Mexico and support previous work which demonstrates high unmet demand for legal abortion services. 8 While our study data do not include those who needed an abortion but were unable to travel, the disparities in vulnerability we observe at the community level between communities ILE clients travel from and communities where no one travels from suggests more Original research vulnerable communities and by extension, women, may face additional barriers to travelling for services. These findings support earlier work that showed that disparities in abortion access are exacerbated by social and economic status. 4 8 13 16 Previous work has shown that simply living where abortion is illegal in the State of Mexico, adjacent to Mexico City, significantly reduced utilisation, especially for women of lower socioeconomic status, even when accounting for travel time. 8 Socioeconomic disparities persist in Mexico and other areas of Latin America, where poor and rural communities experience health worker shortages 17 ; insufficient quality care 18 ; and have fewer health facilities and less travel infrastructure. 19 Studies on travelling for abortion services tend to evaluate women's experiences 20 or measure distance as an indicator of access. 21 22 In the United States, availability of and distance from abortion services are determinants of access, 23 24 and those who travel are most often rural residents accessing abortion services in cities. 25 Our study, however, shows that most of the women who travelled also came from more populous and less marginalised municipalities, highlighting that statelevel restrictions on abortion in Mexico add to known disparities in access to healthcare including abortion services. 18 26 These findings support our hypotheses that (1) ILE clients come from geographically and socioeconomically diverse municipalities and (2) that municipalities home to ILE clients are different (less marginalised) than municipalities with no ILE clients on key markers of socioeconomic status. --- Original research We further explored factors associated with travel for abortion service from more marginalised communities. We show that most ILE clients are aged between 18 and 24 years, are single, and have a high school or university education. However, 33% of ILE clients had only a primary or secondary education, and these women are more likely to come from more highly marginalised municipalities. This is consistent with previous work that showed that less educated women from outside Mexico City may be less likely than their more educated peers to access services from the ILE programme. 7 Additionally, we show that two-thirds (62%) of ILE clients who travel for abortion services are already parents or are experiencing at least a second pregnancy. This is similar to all ILE clients (61%) (including local, Mexico City clients) 13 and abortion clients (59%) in the United States. 27 Previous work suggests that denying women an abortion may have negative socioeconomic or developmental effects on their existing children. 28 While prior studies on abortion in Mexico focused on young women and adolescent access to the ILE programme, 29 and abortion as a strategy to prevent first births, 29 30 our findings highlight that people who are already parents also need access to legal abortion services. Our findings and data source must be interpreted with the following limitations in mind. First, our data are only from those who successfully obtained an abortion from the public sector programme; we cannot therefore estimate unmet demand for abortion services throughout Mexico. Second, we are only able to observe travel to Mexico City for a public sector abortion; women who travel for a private sector abortion are likely less vulnerable. Third, we are unable to observe those who may travel across the US border. Fourth, while out-of-facility or self-managed medication abortion is increasing across Latin America, 31 32 it cannot be estimated here. Fifth, we use clients' selfreported municipalities, and we do not know if they are reporting their permanent municipality (where they grew up) or a temporary municipality. However, a key strength of our study is our ability to include the full universe of ILE clients 2016-2019; previous work has relied on samples. 2 13 --- Conclusions Women who are willing and able to travel to access legal first-trimester abortion in Mexico City's ILE programme come from geographically and socioeconomically diverse communities. Communities where ILE clients come from are, on average, less vulnerable than communities without ILE clients. There is an unmet need for access to abortion all across Mexico and lack of access to local legal abortion services increases disparities in access to care. --- Competing interests BGD receives research support from Merck. Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research. --- Patient consent for publication Not required. Provenance and peer review Not commissioned; externally peer reviewed. Data availability statement Data are available in a public, open access repository. All data used in this study are publicly available and details on the sources are provided in Supplemental Table 1. --- Open access This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work noncommercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is noncommercial. See: http:// creativecommons. org/ licenses/ by-nc/ 4. 0/.

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The Effect of Extremist Violence on Hateful Speech Online

User-generated content online is shaped by many factors, including endogenous elements such as platform affordances and norms, as well as exogenous elements, in particular significant events. These impact what users say, how they say it, and when they say it. In this paper, we focus on quantifying the impact of violent events on various types of hate speech, from offensive and derogatory to intimidation and explicit calls for violence. We anchor this study in a series of attacks involving Arabs and Muslims as perpetrators or victims, occurring in Western countries, that have been covered extensively by news media. These attacks have fueled intense policy debates around immigration in various fora, including online media, which have been marred by racist prejudice and hateful speech. The focus of our research is to model the effect of the attacks on the volume and type of hateful speech on two social media platforms, Twitter and Reddit. Among other findings, we observe that extremist violence tends to lead to an increase in online hate speech, particularly on messages directly advocating violence. Our research has implications for the way in which hate speech online is monitored and suggests ways in which it could be fought.

Introduction Hate speech is pervasive and can have serious consequences. According to a Special Rapporteur to the UN Humans Rights Council, failure to monitor and react to hate speech in a timely manner can reinforce the subordination of targeted minorities, making them "vulnerable to attacks, but also influencing majority populations and potentially making them more indifferent to the various manifestations of such hatred" (Izsák 2015). At the individual level, people targeted by hate speech describe "living in fear" of the possibility that online threats may materialize in the "real world" (Awan and Zempi 2015). At the level of society, hate speech in social media has contributed to fuel tensions among communities, in some cases leading to violent clashes (Izsák 2015). Following one of the most severe humanitarian crises in recent history, Europe has seen a high immigration influx, including Syrian, Afghan, and Iraqi refugees. 1 In the same period, several deadly terror attacks have occured in Western nations (Wang 2017;Global Terrorism Database 2017), leading to an increasingly alarming anti-Muslim rhetoric (TellMAMA 2017) by right-wing populist movements (Greven 2016) and right-leaning media outlets (Worley 2016), often conflating refugees and Muslims with Islamic fanatics (Diène 2006). This rhetoric has also gained adoption online (UNGP and UNHCR 2017), prompting governmental agencies2 and NGOs to call on social media platforms to step up their efforts to address the problem of hate speech (Roberts 2017;TellMAMA 2017). The concern is that the increase in hateful narratives online led to an upsurge in hate crimes targeting Muslim communities (Roberts 2017). Insights into how online expressions of hate thrive and spread can help stakeholders' efforts to de-escalate existing tensions (Burnap and Williams 2014). In this paper, we explore how hate speech targeting specific groups on social media is affected by external events. Anchoring our analysis in a series of Islamophobic and Islamist terrorism attacks in Western countries, we study their impact on the prevalence and type of hate and counter-hate speech targeting Muslims and Islam on two different social media platforms: Twitter and Reddit. Our contribution. We conduct a quantitative exploration of the causal impact of specific types of external, non-platform specific events on social media phenomena. For this, we create a lexicon of hate speech terms, as well as a collection of 150M+ hate speech messages, propose a multidimensional taxonomy of online hate speech, and show that a causal inference approach contributes to understanding how online hate speech fluctuates. Among our findings, we observe that extremist violence attacks tend to lead to more messages directly advocating violence, demonstrating that concerns about a positive feedback loop between violence "offline" and hate speech online are, unfortunately, well-founded. Paper Outline and Methodology Overview. Outlined in Figure 1, our approach consists of several steps: Step 1: We create a longitudinal collection of hate speech messages in social media from Twitter and Reddit that covers a period of 19 months. This collection is based on a series of keywords that are obtained through an iterative expansion --- Themes/ Locations --- Collection of queries --- Stance […] Muslims Immigrants Target group […] Framing […] Promotes violence Intimidates Severity […] Step 2: Data & terms categorization --- Time series generation --- Impact analysis Reddit: volume of posts/ comments/users Twitter: volume of tweets/ unique tweets/users --- Results --- Query expansion (manual & automated steps) Step 3: Event selection Step 4: Impact analysis on time series --- … --- Expanded query terms Original time series Conterfactual time series --- Pre-intervention Post-intervention Figure 1: Steps in our analysis framework: (1) data acquisition and lexicon creation, §3; (2) data categorization, §4; (3) events selection, §6; (4) impact analysis on time series of hate related terms, §5 and results, §6. of known hate speech terms ( §3). Step 2: We categorize the data along four dimensions: 1) the group each message refers to, 2) the attitude of speakers, 3) the severity of hateful expressions, particularly whether they advocate violence, and 4) the framing of content ( §4). Step 3: We select 13 extremist attacks involving Arabs and Muslims as perpetrators or victims, like the Berlin Christmas market attack on Dec. 2016, perpetrated by a follower of jihadist group ISIL, or the Quebec City mosque shooting on Jan. 2017, by a far-right white nationalist (Table 2). Step 4: As evaluating the effect of such attacks on various slices of social media is a causal question, we frame it as measuring the impact of an intervention (event) on a time series (temporal evolution of speech). Following techniques for causal inference on time series (Brodersen et al. 2015), we estimate an event's impact on various types of hate and counter-hate speech by comparing the behavior of corresponding time series after an event, with counterfactual predictions of this behavior had no event taken place ( §5). The last sections present ( §6) and discuss ( §7) our results. --- Background & Prior Work We are interested in the relation between online hate speech and events. To ground our study, we first review work defining hate and counter-hate speech. Given our focus on anti-Muslim rhetoric in the context of extremist violence, we outline previous works on hate speech after terror attacks, and studies of hateful narratives targeting Muslims. We also cover observational studies on social media, particularly those focusing on harmful speech online. Counter-hate speech. Censoring hate speech may clash with legal protections on free speech rights. Partially due to this tension, the position of international agencies like UN-ESCO is that "the free flow of information should always be the norm. Counter-speech is generally preferable to suppression of speech" (Gagliardone et al. 2015). Thus, it is important not only to study hate speech, but also to contrast it with counter-speech efforts-a rare juxtaposition in social media research (Benesch et al. 2016;Magdy et al. 2016). Magdy et al. (2016) estimate that a majority of Islam and Muslim related tweets posted in reaction to the 2015 terrorist attacks in Paris stood in their defense; an observation also made by UNGP and UNHCR (2017) following the 2016 terrorist attack in Berlin, and supported by our own results ( §6). --- Hate Speech Online and Offline Hate speech and violent events. The prevalence and severity of hate hate speech and crimes tends to increase after "trigger" events, which can be local, national, or international, often galvanizing "tensions and sentiments against the suspected perpetrators and groups associated with them" (Awan and Zempi 2015). For instance, Benesch et al. (2016) found extensive hate and counter-hate speech after events that triggered widespread emotional response like the Baltimore protests, the U.S. Supreme Court decision on same-sex marriage, and the Paris attacks during 2015; while Faris et al. (2016) found spikes in online harmful speech to be linked to political events. While these studies are related to ours, they focus on content posted during specific events, or on correlating changes in patterns (e.g., spikes) with events' occurrence. We focus on broader patterns, aiming to quantify changes across types of events and types of content by applying causal inference techniques. Islamophobia. The conflation of Muslims and Islam with terrorism-particularly developed after September 11, 2001-is a key factor behind the increase in Islamophobic attitudes (Diène 2006). A significant increase in anti-Muslim hate crimes was observed after terrorist attacks by individu-als that identify as "Muslim or acting in the name of Islam," with those having a "visible Muslim identity" being the most vulnerable to hostility, including online and offline intimidation, abuse and threats of violence (Awan and Zempi 2015). --- Observational Studies Using Social Media Hate speech on online social platforms. While social media platforms provide tools to meet new people, maintain relationships, promote ideas, and promote oneself; they have also opened up new avenues for harassment based on physical appearance, race, ethnicity, and gender (Duggan 2017). This has led to efforts to detect, understand, and quantify such harmful speech online, with goals such as modeling socially deviant behavior (Cheng et al. 2017), building better content filtering and moderation tools (Matias et al. 2015), and informing policy makers (Faris et al. 2016). The main categorization criteria for online hate speech has been based on the group being targeted (e.g., "black people," "fat people"), the basis for hate (e.g., race, religion) (Silva et al. 2016;Mohammad et al. 2016), and the speech severity (Davidson et al. 2017). For instance, Silva et al. (2016) found "soft" targets like "fat people" to be among the top target groups; yet, these groups are often not included in the documentation of offline hate crimes. Davidson et al. (2017) further discuss challenges in distinguishing between hate speech and other types of offensive speech. Observational methods applied to social data. Recent studies show that quasi-causal methods can be applied to social media data to e.g., distill the outcomes of a given situation (Olteanu, Varol, and Kıcıman 2016), measure the impact of an intervention (Chandrasekharan et al. 2018), or estimate the effect of online social support (Cunha, Weber, and Pappa 2017). The application of these methods to social data, including propensity score matching (De Choudhury et al. 2016), difference-in-differences (Chandrasekharan et al. 2018), and instrumental variables (Zhang, Li, and Hong 2016), was found to reduce confounding biases. Chandrasekharan et al. (2018)'s work is closest to ours, as it employs techniques from the causal inference literature to quantify the impact of an intervention on hateful behavior on Reddit. Yet, the intervention they study is platform-specifica ban on an existing community on Reddit-whereas we look at the impact of external (non-platform specific) events on both Reddit and Twitter. Our focus is on the overall prevalence of hate speech, rather than on the behavior of given groups of users, and we measure the effect of given interventions (events) on various types of hate speech ( §4). Operationalization of hate speech on social media. Due to lack of consensus on what constitutes hate speech and the challenges in operationalizing existing definitions at the scale of current online platforms, prior work has used a mix of manual and automated term selection strategies to identify terms that are likely to occur in hateful texts (Chandrasekharan et al. 2018;Davidson et al. 2017). While focusing on speech targeting Muslims and Islam, we similarly combine existing lexicons with terms obtained through a combination of manual and automated steps ( §3). --- Data Collection Our goal is to characterize and measure online hate speech targeting Muslims and Islam in reaction to major Islamist terror attacks and Islamophobic attacks perpetrated in Western countries. Here, we describe our data collection process, which attempts to be inclusive (high-recall) and hence uses a broad definition of hate and counter-hate speech. We iteratively expand an initial query of keywords related to relevant items by identifying new keywords in the retrieved messages. Our base datasets contain messages from Twitter and Reddit, and a collection of news articles; these are not associated to any particular event, but cover messages potentially related to hate and counter-hate speech over a period of 19 months: from January 1, 2016 to August 1, 2017. --- Data Sources Twitter (https://twitter.com/) is one of the largest microblogging platforms used by hundreds of millions every month. To collect Twitter messages ("tweets") we use an archive representing 10% of the entire public stream, known as the "Decahose." Reddit (https://reddit.com/) is a large social news aggregation platform used by millions every month. Users submit "posts" and "comments" that gain or lose visibility according to up-and down-votes. We collect posts through Reddit's Search API3 (comments are not searchable via this API), retaining all comments to posts matching our queries. News. Finally, we collect news articles from GDELT (Global Data on Events, Location, and Tone, http:// gdeltproject.org/), the largest online catalog of global news events. We use these data as exogenous variables when modeling social media time series before and after a given event. --- Query Construction We collected data using keyword queries, a sampling method applicable to both Twitter's and Reddit's APIs. As our goal was to create a high-recall collection, our sampling procedure consists in formulating an initial query (bootstrapping), followed by an expansion of that query. This method is known to improve the coverage of social media data (Olteanu et al. 2014;Davidson et al. 2017). Query Bootstrapping. We bootstrapped our query selection with an initial list of terms (keywords and hashtags) used in social media campaigns related to anti-Muslim hate and counter-hate speech. This list was assembled retrospectively (as was the rest of our data) using (i) news articles and blog posts discussing social media usage during hate and counterhate campaigns,4 (ii) resources from NGOs or governmental agencies tracking or analyzing hate speech on social media (Awan and Zempi 2015;UNGP and UNHCR 2017), and (iii) research articles (Magdy et al. 2016) terms found in this process were added to the list. This step resulted in a list of 91 terms, including "'#f***quran," "#nosharia," "ban islam," and "kill all muslims." Query Expansion. We then employed a query expansion heuristic to identify further terms that may appear in messages expressing hate or counter-hate towards different groups, including, but not limited to, Arabs and Muslims. The heuristic considers terms frequently appearing in social media messages matched by the terms in our initial list. To obtain a high-recall collection, we considered any new term that may constitute hate or counter-hate speech, using an inclusive, broad definition inspired by Silva et al. (2016) and Chatzakou et al. (2017), and expanded to also cover commentary and counter-hate speech elements. We recorded all terms related to speech that could be perceived as offensive, derogatory, or in any way harmful, and that is motivated, in whole or in a part, by someone's bias against an aspect of a group of people, or related to commentary about such speech by others, or related to speech that aims to counter any type of speech that this definition covers. This expansion was independently done in two iterations for both Twitter and Reddit. First, one of the authors did an annotation pass to identify new query terms. Second, as we favored recall, at least one other author did an additional annotation pass over the terms rejected by the first annotator. External lexicon. To further expand our list of query terms, we added terms from a lexicon built using HateBase,5 a website that compiles phrases submitted and tagged by internet users as constituting hate speech. Given that only an estimated 5% of messages containing HateBase terms were actually identified as hateful; instead of directly using these terms, we used 163 unique terms extracted from Twitter messages containing HateBase terms and manually annotated as hateful or offensive by Davidson et al. (2017). 6 --- Data Acquisition Table 1 presents a summary of the data we acquired. Acquiring Twitter data. We first queried the bootstrap terms, and retrieved 958K messages posted by 413K users. We then expanded the query by manually annotating 2088 terms that appeared more frequently than an arbitrary threshold (ranging from 75 for tri-grams to 300 for uni-grams, which are typically less precise than tri-grams and noisier at lower frequencies), after removing stopwords using the Python NLTK package. We found an extra 612 terms. We queried these terms, growing our collection by 55M tweets posted by 12.5M users. The resulting dataset contains on average 4.5M tweets per month. Since we used the Twitter Decahose (a 10% sample of all Twitter content), we estimate this collection is in fact representative of a larger set of roughly 45M tweets per month. Finally, we retrieved tweets matching the 163 external hate terms (based on HateBase), resulting in an additional 51.6M tweets by 13.7M users. Altogether, we collected over 1TB of raw Twitter data. Acquiring Reddit data. We again began by querying the bootstrap terms, and retrieved 3K posts with 140K comments written by 49K users. We then expanded the query by selecting high-frequency terms (thresholds ranging from 50 to 300 as these data were sparser than Twitter) across all posts and comments, and manually annotating them. Given that the Reddit Search API normalizes terms before running a query, we did not keep different inflections of the same terms. We annotated 4272 terms, and found 1002 related to hate and counter-hate speech. We queried these terms, and retrieved an extra 300K posts with 41M comments written by 3.1M users. Finally, we queried the external hate terms. Altogether, we collected 337K posts with 45M comments written by roughly 3.3M users. Acquiring news data. We used GDELT's Global Knowledge Graph (GKG), as it provides the list of news articles covering each event in their database. This allowed us to compute the overall volume of news per day, amounting to over 130M URLs over our 19 months period of interest. --- Characterizing Hate Speech Here, we present example themes from messages posted in the aftermath of extremist events (listed in §6), and characterize them along four dimensions (stance, target, severity, and framing), which we then use to analyze the data. --- Exploration of Post-Event Messages To understand how the content and themes of messages vary with respect to who is mentioned, what is said, and how the content is framed, we review messages posted after one terrorist and two Islamophobic attacks: Manchester Arena bombing, an Islamist terrorist attack in Manchester that targeted concert goers, killing 23 people and wounding 512 others; Portland train attack, carried out by a man shouting racial and anti-Muslim slurs who fatally stabbed two people and injured a third; and Quebec City mosque shooting that targeted worshipers, leaving 6 dead and 19 injured. We focus on these particular events for their overall difference in nature. Table 2 includes example messages. Who is mentioned? Naturally, many messages mentioned (directly or indirectly) Arabs, Muslims, or Islam, given how we collected our data and the focus of our study. Yet, we also found messages mentioning the victims of the attacks, the mainstream media, political and religious groups (e.g., "the left", "Christians"), immigrants in general, and high-profile individuals (e.g., politicians, journalists). What is said, and why? The content of the messages ranged from blaming Arabs and Muslims for the attack, to providing context and defending Islam. Some messages made crude generalizations or included denigrating insults, while others appeared to either intimidate or incite violence. "killing innocent people is not Islam, there were Muslims at that concert as well" (T) "#IllRideWithYou indicates one should not be scared to be a Muslim. One should be scared to be a racist" (T) --- Denigrates or intimidates "Muslim savages brainwash their kids into hating and killing non believers, as apes and pigs, since really young" (R) Incites violence "#StopIslam wipe its followers from the face of the earth" (T) Diagnoses causes "the left say, look they were not refugees; the fact is that this would never happen if we would have banned them" (R) --- Suggests a remedy "we should deport Muslim scumbags and their families" (R) Table 2: Example messages from Reddit (R) and Twitter (T) for some of the analyzed events, provided for illustration purposes. Messages have been (sometimes heavily) paraphrased for anonymity. How is the content framed? According to Entman (1993) --- Four Dimensions of Online Hate Speech Based on prior work and our exploration of post-event messages, we derive four main dimensions of hate and counterhate speech: stance, target, severity, and framing. While these are useful, we recognize these dimensions are unlikely to capture all aspects of online expressions of hate. Stance. Magdy et al. (2016) make a distinction between online speech that attacks and blames, speech that defends, and speech that is neutral towards Islam and Muslims following a terrorist attack. Benesch et al. (2016) introduce a taxonomy for spontaneous expressions of counter-hate speech on social media platforms. We adapt these categorizations to define the following stances of speech for our study: -Takes a favorable stance in support of individuals, groups, or ideas: defend, show solidarity, propose counter narratives, denounce, or comment on acts of hatred, or emphasize the positive traits of individuals, groups, or ideas (e.g., #ThisIsNotIslam, #NotInMyName); -Takes an unfavorable stance against individuals, groups, or ideas: attack, blame, denigrate, demean, discriminate, employ negative stereotypes, seek to silence, or generally emphasizes the negative traits of an individual or group (e.g., "kill all Muslims," #RefugeesNotWelcome); -Commentary on negative actions or speech against individuals, groups, or ideas: comment on or characterize acts of violence, hatred, harassment, or discrimination (e.g., "hate speech," "racial slur"); and -Neutral, factual, or unclear if it is in support or against a person or group: none of the above; report news facts or comments, describe an event, or not related to a minority or vulnerable group (e.g., "seven injured," "white van"). Target. Hate speech can target any minority or vulnerable group by singling out its identifying characteristics. In the case of Muslims or Islam, these characteristics include religion, country of origin, immigration status, ethnicity, or a conflation of several or all characteristics. We identify the following targets of hate and counter-hate speech: -Muslims and Islam; -Religious groups: unspecified, any religion except Islam; -Arabs, Middle-Easterners, or North Africans: descent without reference to religion; -Ethnic groups or groups of foreign descent: unspecified, any foreign descent, except Arab; -Immigrants/refugees/foreigners in general: without indicating a specific religion or descent; and -Other groups of non-immigrants: based on e.g., gender, sexual orientation, appearance, disability, or age. Severity. International organizations are concerned with how hate speech can lead to violent acts (Izsák 2015). Expressions of hate take many forms (Ghanea 2013;Matias et al. 2015); they can be ambiguous, and the perception of what is hateful varies between individuals (Olteanu et al. 2017). Capturing such subtleties is essential to understanding how severe the repercussions of online hate speech can be; for instance, the Jewish Anti-Defamation League defines a "Pyramid of Hate," showing how prejudice enables discrimination, which enables violence, which enables genocide. 7 We use the following levels of severity of hate speech: -Promotes violence: threaten with violence, incite violent acts, and intend to make the target fear for their safety (e.g., "attack mosque," "kill muslims"); -Intimidates: harass or intimidate the target, or invite others to do so, while actively seeking to cause distress (e.g., "deport illegals," "Muslims not welcomed"); -Offends or Discriminates: defame, insult, or ridicule the target, showing bias, prejudice, or intolerance, while actively seeking to embarrass or harm the target's reputation, (e.g., "Muslim [expletive]," "sand [n-word]"); Framing. Kuypers (2010) defines framing as the "process whereby communicators, consciously or unconsciously, act to construct a point of view that encourages the facts of a given situation to be interpreted by others in a particular manner." Benford and Snow (2000) note that framing is critical to understand social movements and collective action; it can also operate in different ways (Entman 1993). For our analysis, from test annotations we noticed that two frames were quite distinguishable in the text and complementary:8 -Diagnoses the cause or causes for a problem (or elements seen as possible causes): identifies what creates a problem, suggests a diagnose or disagrees with a diagnose (e.g., "terrorists exist because they come from a place that, socially, is centuries behind"); -Suggests a solution or solutions for a problem (or actions seen as possible solutions): proposes or defends actions seen as solving or removing the problem (e.g., "we should target the mosques and [M]uslims, this is what you need to do when at war with these [expletive]"); -Both diagnoses causes and suggests solutions: if both of the above categories apply to the message. Terms or sentences may perform multiple of these framing functions, but they may also perform none of them (Entman 1993). Thus, for annotation purposes we add a catch-all category for those cases where none of these functions apply. --- Methodological Framework To quantify how extremist violence events affect the prevalence of various types of speech, we treat these events as interventions on observed time series. Following existing techniques for causal inference on time series (Eichler 2012;Brodersen et al. 2015), we measure this effect by comparing the behavior of an observed time series (which we refer to as treated) after an event with a counterfactual time series of its behavior had the event not taken place. This synthetic unobserved counterfactual time series (which we refer to as control) is modeled from several observed time series that may be correlated to the treated time series (yet not affected by the event), as we describe below. The causal effect is then estimated based on the differences between the treated and the control time series. Broadly, since we model the counterfactual of the treated time series, this is a generalization of the application of the differences-in-differences techniques to time series (Brodersen et al. 2015). Observed Time Series. We consider time series covering our 19-month observation period with a granularity of one day. For each of the 825 terms we have for Twitter, we experiment with three time series: one for the number of tweets, one for the number of tweets excluding re-tweets (i.e., unique after removal of "RT @user" prefixes), and one for the number of unique users. Similarly, for the 1,257 terms we have for Reddit, we experiment with three time series: one for the number of posts, one for the total number of comments in these posts, and one for the total number of unique users in the post and comments. Synthetic Control Time Series. A synthetic control time series is a counterfactual that reflects behavior had the extremist violence event not taken place. For each treated time series, we build a control series for 1 week following the event based on several data sources:9 (1) the observed series in the 11 weeks leading to the event; (2) the observed series exactly 1 year before the event, for 12 weeks (corresponding to the 11 weeks before and 1 week after the event, but a year earlier); (3) the observed series 23 weeks prior to the event, similarly for 12 week;10 and (4) external information from Twitter, Reddit, and news sources. The external information includes time series whose behavior is unlikely to be affected by the events ( §6). First, we use the overall volume of news on GDELT (i.e., number of daily news article URLs per day) as it does not seem to be affected by any of our events during the observation window. Second, we use the overall number of tweets containing the word "news" which we also observe is not affected by any of our events (also a proxy for the overall volume of tweets). Third, we use the overall number of Reddit posts containing the general term "people," which we also observe is not affected by the events in our list (this is not the case for the series of posts in Reddit containing, e.g., the term "breaking news" which was affected by several of our events). The methodology for synthesizing the control follows Brodersen et al. (2015), using a state space model to predict the counterfactual from the various sources we described above. However, our models are fit using maximum likelihood estimation (Fulton 2015) rather than Bayesian methods like Markov chain Monte Carlo preferred by Brodersen et al. (2015). Our implementation uses the state space model in the UnobservedComponents Python package to model and predict the series, following existing Python implementations of Brodersen et al. (2015).11 Impact Estimation. To estimate the effect of an event using the treatment and control time series, we compute the relative lift or drop as rel effect = 100 × t k -c k c k , where t k is the value of the treated time series at time k, and c k that of the control time series. The summations are over the days we observe after the event, seven in our case. We focus on relative effect as it better allows for comparison across events. For each event, we rank terms based on the relative effect. Some of our time series have intervals of low volume (particularly for Reddit) that may lead to negative-valued synthetic controls and skewed estimates of the effect. To address this, we add a large constant C to all time series before synthesizing the control and estimating the effect. This transformation preserves the shape and amplitude of the impact. Table 3: Distribution of annotations along the entire 19-month observation period, done at the term level (except framing, done at the message level). The percentages may not add to 100% as we omit the cases when none of the categories apply. --- Experimental Results In this section, we present experimental results that estimate how different types of events affect various forms of online speech. First, we select 13 extremist violence attacks (Islamist terrorist and Islamophobic), that occurred during our full 19-month observation period. Next, we annotate our data at query term level for stance, target, and severity, and at message level for framing, according to the hate speech taxonomy introduced in §4. Finally, we present results on various categories of hate speech across events and platforms. --- Experimental Setup Events Selection. We select a set of extremist violence attacks in Western countries involving Arabs and Muslims as perpetrators or victims, and covered by international news media. Our sources are two Wikipedia pages listing Islamist terrorist attacks and Islamophobic incidents. 13 When two events occur within the same week, we selected the one with the largest number of victims, also the most prominent in the news. The list of events is available in Figure 2, where we also display the time series of top-5 bootstrap terms ( §3) on Twitter and Reddit, which shows that these events cover most of the peaks in these terms for Twitter and a majority of them for Reddit. 13 https://en.wikipedia.org/wiki/Islamophobic incidents and https://en.wikipedia.org/wiki/List of Islamist terrorist attacks Crowdsourced Annotations. Our entire list of terms contains 1890 unique terms, which we annotate by employing crowdsource workers through the Crowdflower platform. We select workers from countries having a majority of native English speakers or that were affected by the events (e.g., Germany). Except for "framing," for cost and scalability purposes, we annotate each term with the most likely category the text containing them may fall under. For framing we annotate entire messages, as annotating at the termlevel annotations does not produce reliable labels. For each hate speech dimension and category, we provide detailed definitions and extensive examples; and, for each term we annotate, we show crowd workers clickable links to corresponding search results matching our queries, as returned by both social media platforms, Twitter and Reddit, as well as by two major search engines, Bing and Google. Following standard crowdsourcing practices, we gather at least 3 annotations per term (up to 5 when consensus was not reached), using a set of unambiguous test questions provided by the authors to catch inattentive workers, and resolving disagreements by majority voting. For framing, for each event we annotate samples of 5-6 messages matching the top 100 terms by relative effect, and posted around the time of the event. 14 To obtain the dominating frame of a term, we Figure 3: Example of impact estimation with counterfactual predictions, for the term "evil muslims." Black/red are the observed series before/after the event, green the counterfactual. Top: time series of tweets containing the term after an Islamist terrorism attack (left: Orlando nightclub shooting) and an Islamophobic attack (right: Olathe Kansas shooting). Bottom: differences between observed and counterfactual. first determine the label of the messages it matches, and then assign by majority voting to each term the most prevalent frame, or if the "causes" or "solutions" frames are similarly prevalent, we assign the "causes and solutions" frame. Table 3 shows the overall distribution of annotations; the annotations for frame provide only an approximation based on top terms as impacted by the events in our list. We observed that terms marked as unfavorable represent ≈30%-50% of our query terms, and only ≈20%-30% of those are identified as particularly severe (i.e., promoting violence or intimidating); corresponding to 15% on Twitter and 7% on Reddit. Given the recall-oriented nature of our collection, this supports the observation of Faris et al. (2016), who, using a similar taxonomy, also observed that the incidence of the most severe cases of hate speech is also typically small. Pre-and Post-filtering. Our estimation method requires a minimum number of messages to produce a meaningful result; hence we filter out terms matching only a small number of messages, which we operationalize through arbitrary thresholds requiring a maximum of at least 30 users or messages per day during the event observation window. Figure 3 shows an example of impact estimation on the "evil muslims" term, displaying the observed series, the control series, and their difference in two separate events. In the figure, the widening confidence interval of the forecast matches the intuition that predictions become less certain as we look further into the (counterfactual) future. In general, after applying this process, we consider there to be effect (increase or decrease) if the 90% confidence interval of the difference between treatment and control does not include zero, which means we consider there is no effect where the 90% confidence interval is too large or centered around zero. --- Results and Discussion In this section, we want to quantify the increase or decrease of various types of speech according to the type of event and platform. over 500 M tweets to locate those matching the query terms. [2.4, 3.3]). 15 Looking at the intersection of high severity categories ("promotes violence" and "intimidates") with the target categories for Muslims and Arabs, we estimate an increase in the relative effects across events in both platforms (T: +10.1, 95%CI [1.4, 18.9], R: +6.2, 95%CI [3.9, 8.4]); also higher than the less severe category (offends or discriminates), with one exception, the 2016 Istanbul Airport attack. The question is whether Islamophobic attacks elicit a similar, consistent reaction across platforms and events. The answer seems to be no: for instance, we only observe this pattern after one Islamophobic attack (the 2016 Finsbury Park attack), while after the 2017 Olathe Kansas shooting we estimate a decrease in high severity terms in both platforms. This observation is also supported at an aggregate level by Figure 4 (per-event figures omitted for brevity). Similarly, our estimates indicate an overall increase in counter-hate speech terms following Islamist terrorist attacks (T: +1.8, 95%CI [0.7, 3.0], R: +2.9, 95%CI [2.4, 3.4]), but not after Islamophobic attacks. This effect of Islamist terror attacks on counter-speech is consistent with Magdy et al. (2016) who noticed a notable number of messages defending Muslims and Islam following the 2015 Islamist terror attack in Paris. Are these events more likely to lead to an increase in a specific type of speech? Figure 5 suggests that, on average, there is a higher increase in speech that both promotes violence or intimidates and focuses on Muslims and Arabs following extremist violence events; while there is an increase in counter-hate speech related to religion but not specifically At the event-level, Figure 6 showcases an example of a complex interplay between hate and counter-hate speech terms in reference to different groups after the 2016 Orlando nightclub shooting. This was not only a deadly Islamist terrorist incident, but also the deadliest homophobic attack in the U.S., which means it was very prominently covered in media. It triggered a substantial increase in terms referring to both Islam and the gay/LGBT community. In general, our observations agree with an increase in mentions of Muslims, Islam, or Arabs, after Islamist terror attacks; but not after Islamophobic attacks (figures omitted for brevity). Are there differences in how hate speech is shaped by the events across platforms? For Twitter, Figure 4 suggests an increase for the high-severity categories ("promotes violence" and "intimidates") after Islamic terrorist attacks, but not after Islamophobic attacks. In contrast, for Reddit this distinction is absent, as we see an overall increase after both Islamist terrorist and Islamophobic attacks. Another aspect in which we see differences between Twitter and Reddit is in terms of the framing of messages, particularly with respect to messages including a "solution or something seen as a solution." In general, the terms that tend to increase the most in this frame call for banning or deporting immigrants/Muslims/Arabs, or waging war against Islam and/or Arabs. As shown in the "solution" and "both" columns in Table 4, this fraction is more prevalent for Twitter among the top 100 most impacted terms (about 34% in Islamist terrorist attacks, about 29% in Islamophobic attacks) than for Reddit (about 10% and 16% respectively). --- Conclusions Measuring the effect of external events on hate speech on social media is a challenging task, which needs to be approached with an appropriate methodology (causal inference in our case), and requires a combination of automated processes and manual annotations that balances the needs of large-scale analysis with a finite human annotation budget. We used data from two social media sites, and from two classes of events (Islamist terrorism and Islamophobic attacks), performing a comparison of observed time series for various classes of online hate speech during such events, with counterfactual series that approximate their behavior had those events not taken place. This allows us to make more precise observations about the evolution of hate (and counter-hate) speech of various classes. Our methodology and observations provide a blueprint for better monitoring hate speech online, with particular attention to the relation between calls for violence online and deadly extremist attacks. Additionally, as we estimate increases in counter-hate speech during these attacks, social media platforms could intervene by boosting its visibility. Future Work and Limitations. We hope that the evidence of variations in hate speech following certain events will lead to further research to understand why it happens, who it happens to, and what other qualities of an event may explain these variations; as well as research that delves into the source of the differences we observed across platforms. Further, while our data collection is designed to maximize recall, aiming to provide a good coverage across several categorization dimensions, our bootstrap list of terms can still lead to bias in what gets included in our collections or not. The reliance on query-level annotations may as well introduce noise and biases due to ambiguous uses of some of the terms. We focused on English and only 13 events in the "West," yet future work includes explorations into how our observations may translate to other regions, languages, and type of events. Our frame analysis is also only a first stab at how hateful content is framed after extremist attacks; more in-depth analyses are needed. Finally, our analysis is retrospective, and harmful content is actively deleted by many social media platforms when reported (Matias et al. 2015), which can result in incomplete data collections. As a result, we are more confident in results indicating an increase in certain types of speech, than on those indicating a decrease. Reproducibility. The list of our query terms, several example time series, and the detailed instructions used in the crowdsourcing tasks, are available for research purposes at https://github.com/sajao/EventsImpactOnHateSpeech.

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You Are What You Eat (and Drink): Identifying Cultural Boundaries by Analyzing Food and Drink Habits in Foursquare

Food and drink are two of the most basic needs of human beings. However, as society evolved, food and drink became also a strong cultural aspect, being able to describe strong differences among people. Traditional methods used to analyze cross-cultural differences are mainly based on surveys and, for this reason, they are very difficult to represent a significant statistical sample at a global scale. In this paper, we propose a new methodology to identify cultural boundaries and similarities across populations at different scales based on the analysis of Foursquare check-ins. This approach might be useful not only for economic purposes, but also to support existing and novel marketing and social applications. Our methodology consists of the following steps. First, we map food and drink related check-ins extracted from Foursquare into users' cultural preferences. Second, we identify particular individual preferences, such as the taste for a certain type of food or drink, e.g., pizza or sake, as well as temporal habits, such as the time and day of the week when an individual goes to a restaurant or a bar. Third, we show how to analyze this information to assess the cultural distance between two countries, cities or even areas of a city. Fourth, we apply a simple clustering technique, using this cultural distance measure, to draw cultural boundaries across countries, cities and regions.

Introduction What are your eating and drinking habits? How different are they from a typical individual from Japan or Germany? It is impossible to answer these questions without addressing the cultural features within groups of individuals. However, culture is such a complex and interesting concept that no simple definition or measurement can capture it. Among the various aspects that define the culture of a society (or person), one may cite its arts, religious beliefs, literature, manners and scholarly pursuits. Moreover, as Counihan (Carole 1997), and Cochrane and Bal (Cochrane and Bal 1990) pointed out, eating and drinking habits are also fundamental elements in a culture and may significantly mark social differences, boundaries, bonds, and contradictions. Since eating and drinking habits have such importance for a culture, we here address the topic of investigating and analyzing life and idiosyncrasies of different societies through them. Copyright c 2014, Association for the Advancement of Artificial Intelligence (www.aaai.org). All rights reserved. How can we analyze eating and drinking habits at a large scale? Nowadays, the study of social behavior at a large scale is possible thanks to the increasing popularity of smart phones and location sharing systems such as Foursquare. By means of these technologies, it is possible to sense human activities related to food and drink practices (e.g., restaurant visiting patterns) in large geographical areas, such as cities or entire countries. Foursquare, created in 2009, registered 5 million users in December 2010 and 45 million users in January 2014. Data generated by this popular application triggers unprecedented opportunities to measure cultural differences at a global scale and at low cost (Silva et al. 2013). In this work, we propose a new methodology for identifying cultural boundaries and similarities across populations using self-reported cultural preferences recorded in locationbased social networks (LBSNs). Our methodology, which is here demonstrated using data collected from Foursquare, consists of the following steps. First, we map food and drink check-ins extracted from Foursquare into users' cultural preferences. By exploring this mapping, we are able to identify particular individual preferences, such as the taste for barbecue or sake. Food and drink individual preferences, as shown in this paper, are good indicators of cultural similarities between users. We then show how to extract features from Foursquare data that are able to delineate and describe regions that have common cultural elements, defining signatures that represent cultural differences between distinct areas around the planet. To that end, we investigate two properties of food and drink preferences: geographical and temporal characteristics. Next, we apply a simple clustering technique, namely k-means, to show the "cultural distance" between two countries, cities or even regions of a city, allowing us to draw cultural boundaries across them. Unlike previous efforts, which used survey data, our work is based on a dynamic and publicly available Web dataset representing habits of a much larger and diverse population. Besides being globally scalable, our methodology also allows the identification of cultural dynamics more quickly than traditional methods (e.g., surveys), since one may observe how countries or cities are becoming more culturally similar or distinct over time. The correct identification of cultural boundaries is useful in many fields and applications. Rather than using traditional methods to identify cultural differences, the pro-posed method is an easier and cheaper way to perform this task across many regions of the world, because it is based on data voluntarily shared by users on Web services. Moreover, since culture is an important aspect for economic reasons (Garcia-Gavilanes, Quercia, and Jaimes 2013), our methodology is valuable for companies that have businesses in one country and want to verify the compatibility of preferences across different markets. Another application that could rely on our methodology is a place recommendation system, which is useful for visitors and residents of a city. Foursquare estimates that only 10% to 15% of searches on Foursquare are for specific places (Chaey 2012). Much more often users are searching within broader categories, such as "sushi" (Chaey 2012). Based on this information, systems like Foursquare and other location-based search engines, as the one proposed in (Shankar et al. 2012), could benefit from the introduction of new criteria and mechanisms in their recommendation systems that consider cultural differences between areas. For instance, a person who enjoyed a specific area of Manhattan could receive a recommendation of a similar area when visiting London. The rest of this paper is organized as follows. Section 2 presents the related work. Section 3 describes our dataset and the core of our methodology for extracting cultural preferences from location-based social networks. Section 4 investigates the cultural similarities between individuals, and shows that food and drink check-ins outperforms check-ins given in all types of places in this case. Section 5 shows how to extract cultural signatures for different areas of the globe and explore the similarities among them, while Section 6 applies this knowledge to analyze the implicit cultural boundaries that exist for different cultural aspects of the society. Finally, Section 7 summarizes our contributions and discusses some possibilities of future work. --- Related Work Several studies have focused on the spatial properties of data shared in location-based services such as Foursquare (Scellato et al. 2011;Cho, Myers, and Leskovec 2011;Noulas et al. 2011a). However, those prior efforts aimed at investigating user mobility patterns or social network properties and their implications. More recently, researchers have started looking at user activity as another data source that can be leveraged for studying social interactions (Sakaki, Okazaki, and Matsuo 2010). Based on this principle, there have been many studies to extract new insights about city dynamics such as, for example, their key characteristics and the behavior of their citizens. For instance, Cranshaw et al. (Cranshaw et al. 2012) presented a model to extract distinct regions of a city according to current collective activity patterns. Similarly, Noulas et al. (Noulas et al. 2011b) proposed an approach to classify areas of a city by using all venues' categories of Foursquare. Some recent studies have shown how the use of Web systems vary across countries. For example, Hochman et al. (Hochman and Schwartz 2012) investigated color preferences in pictures shared through Instagram, showing considerable differences in the preferences across countries with distinct cultures. Garcia-Gavilanes et al. (Garcia-Gavilanes, Quercia, and Jaimes 2013) and Poblete et al. (Poblete et al. 2011) studied variations of Twitter usage across countries. In particular, Garcia-Gavilanes et al. showed that cultural differences are not only visible in the real world but also observed on Twitter. Cross-cultural studies (i.e., the study of cultural differences) do not constitute a new research area. Indeed, they have been carried out by researchers working in the social sciences, particularly in cultural anthropology and psychology (Murdock 1949). Despite globalization and many other technological revolutions (Blossfeld et al. 2005), group formation might lead to the emergence of cultural boundaries that exist for millennia across populations (Barth 1998). Axelrod (Axelrod 1997) proposed a model to explain the formation and persistence of these cultural boundaries, which are basically a consequence of two key phenomena: social influence (Festinger 1967) and homophily (McPherson, Smith-Lovin, and Cook 2001). While homophily dictates that only culturally similar individuals are likely to interact, social influence makes individuals more similar as they interact. In a long run, these two phenomena lead to very culturally distinct groups of individuals, delimited by the socalled cultural boundaries. --- Extracting Cultural Preferences In this section we present our dataset and our methodology for extracting cultural preferences from LBSNs. --- Mapping User Preferences One of the biggest challenges in the analysis of cultural differences among people and regions is finding the appropriate empirical data to use. The common approach to overcome this challenge is the use of surveys based on questionnaires filled during face-to-face interviews (Valori et al. 2012), such as the Eurobarometer dataset (Schmitt et al. 2005). Through these questionnaires, individual preferences, such as the taste for coffee and fast food, can be mapped into multidimensional vectors representing (and characterizing) each interviewee. From these vectors, it is possible, for instance, to quantify how similar or different two individuals are. Although survey data are broadly used in the analysis of cultures, there are some severe constraints in its use, which are well known to researchers. First, surveys are costly and do not scale up. That is, it is hard to obtain data of millions, or even thousands of people. Second, they provide static information, i.e., they reflect the preferences of users at a specific point in time. If some of the preferences change for a significant amount of the interviewed people, such as the taste for online gaming instead of street ball playing, the data is compromised. In order to overcome the aforementioned constraints, we propose the use of publicly available data from LBSNs to map individual preferences. LBSNs can be accessed everywhere by anyone who has an Internet connection, solving the scalability problem and allowing data from (potentially) the entire world to be collected (Silva et al. 2013). Moreover, these systems are dynamic, being able to capture the behavioral changes of their users when they occur, which solve the second mentioned constraint. However, data from such systems can be used if and only if they meet the requirements: • [R1] It is possible to associate a user to its location; • [R2] It is possible to extract a finite set of preferences from the data that is generated by the system; • [R3] It is possible to map users' actions in the system into the preferences defined in [R2]. Considering that these requirements are met, a dataset containing individual activities of N users of a LBSN can be used to map preferences as follows. First, associate each user n i with a location l i , which may be a country, a city or even a region within a city. Then, define a set of m individual preferences (or features) f 1 , f 2 , . . . , f m that can be extracted from the dataset, which may represent the taste for the most varied things, such as Japanese food or a certain football team. Finally, map the activities of each individual n i into an m-dimensional vector of preferences F i = f 1 i , f 2 i , . . . , f m i that characterizes the person's tastes, the same type of vector that is usually created from survey data (Valori et al. 2012). Since the preference vector F i is generated from selfreported temporal data of an individual n i , we may populate and modify it in various ways. For instance, we can use a binary representation, where f k i = 0|1 represents whether user n i has or not preference f k (e.g., whether a person likes/dislikes a certain type of food), respectively. Alternatively, we may consider the intensity at which a user likes a feature, inferred from the number of times the corresponding preference is reported in the person's data, i.e., f k i = [0; ∞). In Section 4, we adopt a binary representation. Finally, one can group individuals by their geographical regions and sum up their preference vectors to characterize their regions. We adopt this approach in Section 5 to build preference vectors for regions (instead of individuals). --- Data Description In this work, the dataset used to infer user preferences was collected from one of the currently most popular location based social networks, namely Foursquare. We collected this data from Twitter 1 , since Foursquare check-ins are not publicly available by default. Approximately 4.7 million tweets containing check-ins were gathered, each one providing a URL to the Foursquare website where information about the venue, in particular its geographic location and category, was acquired. In the dataset, each check-in consists of the latitude, longitude, identifier, and category of the venue as well as the time when the check-in was done. Foursquare venues are grouped into eight categories: Arts & Entertainment; College & University; Professional & Other Places; Residences; Great Outdoors; Shops & Services; Nightlife Spots; and Food. Each category, in turn, has subcategories. For example, Rock Club and Concert Hall are subcategories of Nightlife Spots. In order to show that our methodology is able to capture cultural dynamics in short time windows, we use a dataset that spans a single week of April 2012. Moreover, since we are primarily interested in food and drink habits, we manually grouped relevant subcategories of 1 http://www.twitter.com. the Food and Nightlife Spots categories into three classes: Drink, Fast Food, and Slow Food places. We did this by excluding some subcategories that are not related to these three classes (e.g. Rock Club and Concert Hall) and moving some subcategories (e.g. Coffee Shop and Tea Room) from the Food category to the Drink class. Besides that we also disregard the category Restaurant, because it is a sort of meta category that could fit in any of the two classes of food. After this manual classification process, the Drink class ended up with 279,650 check-ins, 106,152 unique venues and 162,891 unique users; the Fast Food class with 410,592 check-ins, 193,541 unique venues, and 230,846 unique users; and the Slow Food class with 394,042 check-ins, 198,565 unique venues, and 231,651 unique users. Moreover, the Drink class has 21 subcategories (e.g., brewery, karaoke bar, and pub), whereas the Fast Food class has 27 subcategories (e.g., bakery, burger joint, and wings joint) and the Slow Food class has 53 subcategories, including Chinese restaurant, Steakhouse, and Greek restaurant. To provide an idea about the size of the user population LBSNs can reach, consider the World Values Survey2 project. That study is maybe the most comprehensive investigation of political and sociocultural change worldwide, which was conducted from 1981 to 2008 in 87 societies, with about 256,000 interviews. Observe that our one-week dataset has a population of users of the same order of magnitude of the number of interviews performed in that project in almost three decades. --- Mapping Foursquare Data into User Preferences Several characteristics of human beings are not directly observable, such as personality traits. Thus, we rely on face-toface interactions or online signals to discover the presence of those hidden qualities (Pentland 2010). In this direction, a LBSN check-in can be considered as a signal because it is a perceivable feature/action that expresses the preference of a user for a certain type of place. With that in mind, we use Foursquare check-ins to represent user preferences regarding food and drink places. Specifically, we use the three main classes defined in Section 3.2, namely, Drink, Fast Food, and Slow Food. Figures 1a,1b, and 1c show the frequency of check-ins at each subcategory of the Drink, Fast Food, and Slow Food classes, respectively, so we can have a general idea about the popularity of user preferences for different food and drink related places. These figures show the popularity of different places according to people's preferences worldwide. Note that Coffee Shop and Bar are the two most popular subcategories of Drink places, with 86,310 and 81,124 checkins, respectively. The two most popular Fast Food subcategories are Café 3 and Fast Food Restaurant, with 91,303 and 56,648 check-ins, respectively. Finally, American Restaurant (47,373 check-ins), and Mexican Restaurant (28,712 check-ins) are the two most visited subcategories of Slow Food places. In this dataset, a user is represented by a vector of m =101 features corresponding to the 101 subcategories that comprise the three classes we have defined. A feature f i ∈ F = {f 1 , f 2 , . . . , f 101 } is equal to 1 if a user made at least one check-in at f i , and 0 otherwise. In this way, a feature vector represents the positive and negative preferences of a user for fast food, slow food and drink subcategories. With that, a finite set of preferences is extracted (requirement [R2], see definition in Section 3.1) and users' actions are mapped into this set (requirement [R3]). To associate a user with a location (requirement [R1]), we analyzed the GPS coordinates of all check-ins performed by the user. If all check-ins performed are from the same country, according to the free reverse geocoding API offered by Yahoo 4 , we assume that the user taken into consideration is from that country. Otherwise, we do not consider the user in our analysis. In this way, we minimize the wrong association of a user with a country. Following this procedure, approximately 1% of the users were disregarded from our analysis. --- Cultural Analysis of Individuals In this section, we use the map of preferences presented in Section 3.3 to analyze the individual preferences of users, showing, among other results, that food and drink preferences are good indicators of cultural similarities. In order to assess the cultural similarities among users, we construct a similarity network G s = (V s , E s ), where s is a similarity threshold used to build the network, vertices V s represent the set of users, and an edge (v i , v j ) exists in E s if users v i and v j have a similarity score above s. The similarity score s i,j between two users v i and v j is the Jaccard index (JI) between their preference vectors 5 multiplied by 100. In this way, s i,j varies from 0 to 100 and measures the 3 Like in many European countries, this term is referred as a restaurant primarily serving coffee as well as pastries. 4 http://developer.yahoo.com. 5 The Jaccard index of sets A and B is computed as A∩B A∪B . percentage of preferences shared by the users v i and v j . For example, considering a similarity threshold s = 65 (or 65%network6 ), there is an edge between vertices v 1 and v 2 if the corresponding users have, at least, 65% of preferences in common. We have built two similarities networks: G 1 s ; and G 2 s . The network G 1 s considers only food and drink preferences, i.e., only check-ins at food and drink places. On the other hand, G 2 s consider all preferences, i.e., all Foursquare subcategories, including food and drink venues. To build both networks we consider only the users who performed at least 7 check-ins in the dataset (i.e., at least one check-in per day on average). In total, 28,038 users were considered in G 1 s and 194,902 in G 2 s . Moreover, isolated nodes were disregarded. We here consider the following values of s ∈ {65, 70, 75, 80, 85, 90, 95, 100}. Note that G 1 s and G 2 s are undirected unweighted and symmetric graphs. We first analyze relevant properties of G 1 s and G 2 s . Figure 2a shows the percentage of vertices (i.e., users) in the two largest components of the network G 1 s , for various values of s (figure omitted for the network G 2 s due to space limitations). Figure 2a shows that the largest component of the 65%-network practically contains all nodes. The percentage of users in the largest component slowly decreases as the similarity threshold increases, until s reaches 85. For larger values of s, the number of users in the largest component drops sharply, becoming comparable to the size of the second largest component. This is explained by observing networks built using large values for s, such as the 100%network, where every component is composed of very similar users. Since users with very similar preferences are rare, the largest components tend not to have very large differences in size. We note that the results for the network G 2 s are similar to those observed for the network G 1 s , for example, the largest component of the 65%-network also contains practically all nodes. In order to verify the tendency of users from the same region to be connected, we calculate the assortativity of the similarity networks. Assortativity measures the similarity of connections in the network with respect to a given attribute, and varies from -1 to +1 (Newman 2002). In an assortative network (with positive assortativity), vertices with similar values of the given attribute (e.g., same country) tend to connect with (be similar to) each other, whereas in a disassortative network (with negative assortativity), the opposite happens. The assortativity analysis for the networks G 1 s and G 2 s formed from various values of s are shown in Figures 2b and2c, respectively. Note that the assortativity for the net- work G 1 s with respect to the geographical attributes (region Western/Eastern, continent, and country) decreases with the similarity threshold. This happens because most of the edges in the networks, formed from similarity threshold s ≥ 90, connect users who have preference vectors with a few positive features (as defined in Section 3.3). This also helps to explain why, in both figures, the degree assortativity increases with the similarity threshold: considering only very particular tastes, the network tends to be composed mostly of cliques, making the degree assortativity very close to 1. On the other hand, if we vary the value of s in the network G 2 s , the assortativity for geographical attributes remains roughly the same. It is possible to explain this behavior by looking at the size of the preference vector F for the network G 1 s , which is much smaller compared to that for the network G 2 s (101 against 435). Since the preferences are distributed over almost all the categories, a larger preference vector implies a lower probability of having preferences in common between two users, and, consequently, fewer edges in a similarity network, even for lower values of s. Note also that, in both Figures 2b and2c, all similarity networks we take into consideration are assortative. However, the assortativity values of the geographical attributes for G 1 s are most of the time higher compared to those obtained for G 2 s . When considering all preferences/features we also increase the number of features that do not discriminate cultural differences sufficiently well (e.g., venues like homes, hotels, student centers, and shoe stores), since they are essentially present in all the cities and countries in the world. This suggests that, in this case, a similarity network considering only food and drink preferences might provide better insights in the study of cultural differences. --- Extraction of Cultural Signatures Given the results discussed in Section 4, we hypothesize that it is possible to define cultural signatures of different areas around the planet. In this section, we show how to extract features from Foursquare data that are able to describe regions from their cultural elements. In particular, we investigate two properties of food and drink preferences: their geographical (Section 5.1) and temporal (Section 5.2) aspects. --- Spatial Correlations Here our goal is to define a set of features that are able to characterize the cultural preferences of a given geographical area in the planet, such as a country, a city or a neighborhood. Thus, for a given delimited area a (e.g., the city of Chicago), we sum up the values of the features in the preference vectors of the users who checked in at venues of that area. In other words, we count the number of check-ins C a = c a 1 , c a 2 , . . . , c a 101 performed in venues of each of the 101 subcategories s 1 , s 2 , . . . , s 101 of the Fast Food, Slow Food and Drink classes (Section 3.2) that are located within the perimeter of area a. Next, we represent each area a by a vector of 101 features F a = f a 1 , f a 2 , . . . , f a 101 , where each feature f a i is equal to c a i / max(C a ). That is, we normalize the number of check-ins at each subcategory by the maximum number of check-ins performed in a single subcategory in area a (max(C a )). Thus, each area a is represented by a feature vector F a containing values from 0 to 1, indicating the preferences of people who visited that area, i.e., the profile of preferences for that area. From now on, we use F a drink , F a sf ood and F a f f ood to refer, respectively, to the subset of features that correspond to subcategories belonging to the Drink, Slow Food and Fast Food classes in area a. In order to verify if two areas a and b are culturally similar, we compute the Pearson's correlation coefficient between the two feature vectors F a and F b of those areas. We compute the correlation considering all features (F a and F b ) as well as a subset of them (e.g., F a drink and F b drink ). In particular, Figure 3 shows the correlations between areas corresponding to 27 different popular countries for the Drink (3a), Fast Food (3b), and Slow Food (3c) classes; the darker the color, the stronger the correlation (blue for positive correlations, red for negative correlations). The same correlations computed for city level areas (16 cities around the world) are shown in Figure 4. Analyzing the results for the Drink class (Figure 3a), we find countries with very strong correlations, such as Argentina and Chile, as well as countries with low correlation, such as Brazil and Indonesia. Moreover, although regions close geographically tend to have stronger correlations, this is not always the case. For example, the correlation between Brazil and France is stronger than the correlation between England and France, which are geographically closer. Similarly, Figure 4a 7 shows that cities in the same country tend to have very correlated drinking habits in most cases, but there are exceptions: Manaus (Brazil), for instance, has weak correlation with other cities in Brazil. This might be due to this city being located in the North region of Brazil, which is known for having a strong cultural diversity compared to other parts of the country. Turning our attention to food practices, we observe in Figures 3b and 4b the global penetration of fast food venues, at both country and city levels, explained by the diffusion of fast food places worldwide (Watson 2006). This is not observed in the same intensity for the Slow Food class (Fig- ures 3c and4c). The Slow Food class presents the highest distinction, or smaller correlation, across most of the countries and cities. This is expected, since Slow Food venues usually are representative of the local cuisine. Note, for instance, that cities from Brazil and USA have highly correlated drinking and fast food habits, but almost no correlation in slow food habits. Finally, we turn our attention to the cultural habits within city boundaries. It is known that, in many cities, there is a strong cultural diversity across different neighborhoods (Cranshaw et al. 2012), reflecting distinct activities typically performed in these areas. To analyze these local cultures, we focus on three populous cities, namely London, New York, and Tokyo. We divide each city's geographical area using a grid structure. Next, we select the most popular cells in the grid of each city and label them with a number, as shown in Figure 5. We then compute the correlation between the selected cells. Note that we here assume a grid with regular (rectangular) cells to show the potential of the proposed analysis. However, our approach can be applied to any other segmentation of the city areas (e.g., by city districts). Figure 6 shows the correlations for pairs of cells within 7 The ratio of check-ins per inhabitant is similar among all the cities taken into consideration. For example, comparing Manaus (one of the cities with fewer check-ins) with Sao Paulo (largest number of check-ins in Brazil) we find the following ratios: 0.35 × 10 -3 and 0.37×10 -3 (Drink class); 0.73×10 -3 and 0.75×10 -3 (Fast Food class); and 0.54 × 10 -3 and 0.71 × 10 -3 (Slow Food class). the same city and from different cities. Note that, for the Drink class, different areas within the same city tend to have very strong correlations. There are also areas from different cities with strong correlations (e.g., areas NY-5 and TKO-1). For Fast Food places, the correlations between areas within the same city are much stronger for Tokyo, although the correlations between New York and London areas are fairly moderate. In contrast, there are areas with negative correlation, e.g., NY-3 with most of Tokyo areas. Finally, for the Slow Food class, once again Tokyo areas are very strongly correlated among themselves. In comparison with the Fast Food class, there is a more clear distinction (weaker correlation) between London and New York areas as well as among distinct areas in London. This last observation is probably due to a specific characteristic of London, that has neighborhoods with a strong presence of a cuisine of a particular region of the globe. Observe also that two specific areas of New York, namely NY-7 and NY-8, are par- ticularly not correlated with the others from this city. This is probably related to the location of Chinatown in those areas (mainly NY-7). Indeed, this particular area (NY-7) has a strong correlation with a particular area of London, LND-5, where Chinatown/London is located. --- Temporal Analysis We now turn our attention to the temporal and circadian aspects of cultural habits. The time instants when check-ins are performed in food and drink places may also provide valuable insights into the cultural aspects of a particular region. For example, in a particular area, one may like to drink beer during the weekends but not during the weekdays. To that end, we first count the number of check-ins per hour during the whole week covered by our dataset in venues of each class (Drink, Fast Food and Slow Food) for different regions. Next, we group days into weekdays and weekends, summing up the check-ins performed on the same hour of the day in each group and for each region. We then normalize this number by the maximum value found in any hour for the specific region, so that we can compare the patterns obtained in different regions. For illustration purposes, we show the results for three countries (Brazil, USA, and England) and for three American cities (Chicago, Las Vegas, and New York) in Figures 7 and8, respectively. Results for each class are shown separately for weekdays and weekends. Focusing first on weekday patterns, Figure 7 shows that American and English people have similar peaks of activities, despite differences in their preferences for different categories of places, as previously shown (Figure 3). In contrast, Brazilians tend to have significantly different temporal patterns, particularly in terms of activities in Slow Food places (Figure 7c): whereas Americans and English people tend to have their main meal at dinner time, Brazilians have it at lunch time. Observe also that Brazilians have their meals later, compared to Americans and English people. Concerning the times when people go to drink venues, it is possible to note similarities among most of the cities from the same country, but also some different patterns. For example, most of the analyzed cities from USA exhibit a weekday pattern similar to New York and Chicago, shown in Figure 8a, with three distinct peaks around breakfast, lunch and happy hour (around 6pm). This behavior is consistent with the general pattern observed for the country, shown in Figure 7a. However, Las Vegas is one exception, since there is an intense activity during the dawn, besides many other peaks of activities that do not occur in other cities. Turning our attention to eating habits on weekdays, Figure 8 shows that most cities in the USA present activity patterns very similar to the general pattern identified for the country, both in terms of Slow and Fast Food places. However, as observed for drinking patterns, there are exceptions, such as Las Vegas, which exhibits distinct trends that reflect inherent idiosyncrasies of this city. We also note relevant similarities and differences in eating habits of people from cities in different countries. For example, comparing Figures 8b and8c with similar graphs produced for different Brazilian cities, we find that while all curves for the Fast Food class are very similar, the curves for Slow Food places are quite different, reflecting distinct habits for each country, as discussed previously. The curves for weekends have very distinct peaks of activities from those of weekdays, both at the country and city levels. For instance, as shown in Figure 7, English people have a very distinct drinking pattern from Americans on weekends. Moreover, the differences among the countries in terms of preferences at Slow Food places are also clear on weekends: Brazilians tend to go to Slow Food places more often at lunch time, whereas Americans and English people do it more at dinner time. We note that there is no clear (dominant) temporal checkin pattern for Fast Food places on weekends, when considering different cities of a country. However, we do note that most activities happen after noon, which was expected. In contrast, there is a dominant pattern for check-ins at Slow Food places on the weekends, and it is similar to the one observed on weekdays. This is possibly because such places (often restaurants) have well-defined opening hours, serving meals around lunch and dinner times only, which coincide with the times of check-in peaks (Figures 7c,7f,8c,and 8f). Assuming that the height of such peaks reflects the importance of that meal for a certain culture, we note once again a key distinction between Americans and Brazilians. --- Discussion In addition to temporal and spatial patterns of check-ins at different types of places, we also compute the Shannon's entropy (Shannon 1948) of preferences for each venue subcategory among all considered areas. The goal is to analyze whether the check-ins at specific subcategories are more concentrated at specific areas (low entropy) or not (high entropy). We compute the entropy for subcategories of each class (Drink, Fast Food and Slow Food) at country and city levels. The average entropy for subcategories of the Drink class is 3.23 (standard deviation σ = 0.93) for countries and is 3.88 (σ = 1.09) for cities. Sake bar is one example with low entropy (1.13 for countries and 1.89 for cities), which indicates that this subcategory is popular on very few countries and cities. Surely Japan contributes considerably to this result. On the other hand, the average entropy for subcategories of the Slow Food class is much larger, 2.63 (σ = 0.78). This higher entropy reflects the widespread popularization of various cuisines. For example, a check-in at an Italian restaurant does not necessarily mean that it represents a behavior of an Italian, since it is a very international type of restaurant, confirmed by the high entropy (3.63). Note, however, that if the check-in at an Italian restaurant is made at lunch time it could be more likely to represent a Brazilian behavior than American, since Brazilians have their main meal at lunch time, as presented in Section 5.2. Time plays an important role in this case. Given these considerations and all the observations reported here, we propose the use of spatio-temporal correlations of check-ins as cultural signatures of regions. 6 Identifying Cultural Boundaries --- Clustering Regions In this section, we use the cultural signatures of regions described above to identify similar areas around the planet according to their cultural aspects, delineating their so-called "cultural boundaries". To that end, we first represent each area a by a high dimensional preference vector composed of 808 features, namely the normalized number of check-ins at each of the 101 subcategories in four disjoint periods of the day, on weekdays and on the weekends. We then apply the Principal Component Analysis (PCA) (Jolliffe 2002) technique to these vectors to obtain their principal components8 . Finally, we use the k-means algorithm, a widely used clustering technique, to group areas in the space defined by these principal components. We perform this analysis for areas defined at the country, city and neighborhood levels. The score values for the first two principal components generated by the PCA for countries, cities, and regions are shown in Figures 9a, 9b, and9c, respectively. The variance in the data explained by these first two components is shown in each figure. Each color/symbol in those figures indicates a cluster obtained by k-means, which used the p first principal components that explain 100% of the variation in the data (p=15 for countries, p=26 for cities and p=22 for regions). The k value in the k-means varied according to the characteristics of the considered areas. For countries, we set k=7 (same number of clusters used in (Inglehart and Welzel 2010)). Following the same logic, we set k=4 for cities, since we considered cities from 4 different continents/countries, and k=3 for regions inside a city, because we considered 3 cities. We used the cosine similarity to compute the similarity between locations. It is possible to observe in Figure 9a that countries with closer geographical proximity are not necessarily associated with the same cluster. For example, Australia and Indonesia are not in the same cluster. Although they are geographically neighboring countries, they are culturally very distinct. When analyzing large cities from the considered countries, Figure 9b shows that they are well clustered by the geographical regions where they are located: Asia, Brazil, Europe and USA. Intuitively, this result makes sense, since, for instance, cosmopolitan European capitals tend to present more similar cultural habits among each other than among cities from different continents. Turning our attention to regions inside London, NY, and Tokyo, we observe in Figure 9c that all regions in the same city are in the same cluster. This result was also expected when considering all features. Besides that, when we analyze a subset of features, for example, drinking habits during weekends in all regions of London, NY, and Tokyo (result omitted), we find that some regions of London and NY are clustered together. This is corroborated by the results shown in Section 5: for certain categories, there are regions from different cities that are very similar and, thus, end up clustered together. , observe that the similarities are striking, with only two major differences. First, the "Islamic" cluster dissolved, with Turkey joining Russia and Indonesia joining Malaysia and Singapore. Second, USA and Mexico left the "English Speaking" and the "Latin America" clusters, respectively, and paired up to form a new one. Note, nevertheless, that these differences might not be surprising as these new boundaries. --- Comparing with Survey Data We formally investigate the differences between boundaries given by the WVS study and by our approach. In order to do so we rank, for a given country, all the other countries according to their cosine similarity towards it. We compute the similarity using the dimensions produced by the WVS data (Inglehart and Welzel 2010) and the dimensions computed by our approach. Then, we compute the Spearman's rank correlation coefficient ρ between these two ranks to see, for instance, if the most similar (and distinct) countries to England using the WVS data are ranked similarly when we use our approach. In our approach, we use two different datasets. In dataset 1 , we use the full set of features, as done so far. In dataset 2 , we use solely the features extracted from the fast food check-ins performed during the weekends9 . Table 1 shows these results. We highlight in bold all the coefficients which are statistically significant, i.e., with a p-value < 0.05. Observe that the correlation ρ is significant and positive for several countries. For dataset 1 and dataset 2 , 9 and 12 countries have similar ranks with the ones given by the WVS, respectively. This shows that our approach, which is based solely on one week of participatory data, has a clear potential to reproduce cultural studies performed using surveys, such as the ones relying on the WVS, which is based on 4 years of survey data. We would also like to point out the reasons for the differences between our cultural map and the WVS map, as well as for the negative correlations seen in Table 1. First, the traits of each dataset are significantly different. While the WVS looked at several cultural dimensions, from religion to politics, from economics to lifestyle, we looked only at food and drink preferences. Second, the WVS data has a distance of 4 to 7 years to our data. During this time, significant cultural changes may have happened, given that the world is getting more connected at every day. Third, the most significant differences are related to multi-ethnic, multicultural, and multilingual countries, such as Malaysia and Turkey. In these countries it is probably hard to find culturally homogeneous samples of individuals, which might be the cause of the discrepancies seen between our results and those described in (Inglehart and Welzel 2010). --- Conclusions and Future Work This work proposes a new methodology for identifying cultural boundaries and similarities across populations. For that, we map food and drink check-ins extracted from Foursquare into users' cultural preferences, considering spatio-temporal dimensions. We then apply a simple clustering technique to show the "cultural distance" among countries, cities or even regions within a city. The considered set of features allows the identification of cultural boundaries that despite often agreeing on common knowledge, is based on large-scale data. Thus, unlike other empirical work, which is based on survey data, our methodology can reach global scale much faster and at a much lower cost. It is also important to emphasize that the proposed methodology could be used to work with other types of features, which might be useful for other kind of studies. One of the obvious directions is to exploit the criteria for identifying cultural boundaries defined in this paper in order to perform social studies at large scale. Besides that, we also want to develop recommendation mechanisms considering the cultural characterization of specific urban areas. This could be useful, for instance, for location-based social networks like Foursquare to improve their current recommendation systems.

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Socioeconomic Status in Adolescents: A Study of Its Relationship with Overweight and Obesity and Influence on Social Network Configuration

Socioeconomic status (SES) influences all the determinants of health, conditioning health throughout life. The aim of the present study was to explore the relationship between socioeconomic status and obesity in adolescence through an analysis of the patterns of contact between peers as a function of this parameter. A cross-sectional study was performed, analyzing a sample of 235 students aged 14 to 18 and 11 class networks. Social network analysis was used to analyze structural variables of centrality from a sociocentric perspective. We found that adolescents with a medium-low SES presented a two-fold higher probability of being overweight, but we did not detect any differences in the configuration of their social networks when compared with those of normal-weight adolescents. However, we did find significant differences in the formation of networks according to SES in the overall sample and disaggregated by gender, whereby adolescents with a high SES in general presented a higher capacity to form wider social networks. Elucidating the relationship between SES and overweight and its influence on social network formation can contribute to the design of preventative strategies against overweight and obesity in adolescents, since their social environment can provide them with several resources to combat excess weight.

Introduction In 1974, the Canadian Minister Marc Lalonde published a pivotal report in public health that stressed the importance of health promotion and included aspects rarely considered before then, such as the environment and lifestyle [1]. Socioeconomic status (SES) conditions all the determinants of health defined by Lalonde, constraining or shaping our beliefs, behaviors and even our biology [2]. It is also at the root of health inequalities, since political, economic and social factors give rise to an unequal distribution of opportunities to enjoy health [3]. Social inequalities in childhood can lead to the same inequalities in adulthood, fueling a harmful legacy from generation to generation [4]. SES is therefore one of the many factors that can determine the existence of overweight in children, adolescents and adults. According to the World Health Organisation (WHO), it is low-and middle-income countries that are primarily affected, and the prevalence of overweight and obesity in preschool children living in countries with emerging economies can exceed 30% [5]. Numerous studies have reported an inversely proportional relationship between SES and overweight and associated problems in childhood, whereby the lower the SES, the higher the prevalence of health problems [6][7][8][9][10][11][12]. An association has also been found between SES and the two decisive factors in this major epidemic of overweight and obesity: diet and physical activity. For example, young people from certain ethnic groups with a low SES consume more fatty and high calorie foods [12] and in general have worse eating habits [13,14]. Meanwhile, the relationship between SES and physical exercise is directly proportional: the lower the former, the less the latter is performed [15]. In relation to the subject of the present study, adolescents' personal and individual social networks determine behavior related to food and physical exercise in this age group: it has been shown that besides adults, peers and friends are also able to modify habits related to excess weight [16][17][18][19][20][21][22][23]. Although this influence on such habits can be negative as well as positive, these social networks should nevertheless be viewed as a source of material, personal and/or institutional resources from which to obtain the necessary information, support and services [24]. Adolescents need to belong to a social network with which they identify to attain satisfactory physical, psychological, and social development [25], since their social environment provides them with the tools necessary for managing group relations [26]. SES also determines the structure and function of social networks. For example, it has been demonstrated that adults with a low SES tend to report fewer social networks and less support [27]. The configuration of adolescents' social networks might be similarly affected by this factor, compromising the support networks can provide to combat problems such as overweight and obesity, and reducing the resources available for information or support on issues related to food or physical exercise. In light of the above, our goal was to study the relationship between SES and overweight (overweight + obesity) in our sample and to relate this parameter to adolescents' centrality in their social network at school, both in general and in relation to their weight status, by conducting a social network analysis (SNA) from a sociocentric or global perspective. We believe that the information obtained would be useful for the design of strategies to combat overweight and obesity and would shed light on one of the most pressing public health problems today: obesity in the adolescent population. --- Materials and Methods --- Population and Sample We invited 776 students in their third and fourth years of compulsory secondary education at five schools in the city of Ponferrada (Spain) to participate in the study. Permission for data collection was sought from the Castile and León Education Department and the Spanish Data Protection Agency, and interviews were conducted with school heads and teachers to obtain their collaboration in the study. To participate in the study, students were asked to provide their informed consent via a form signed by their parents and designed in line with the recommendations of the University of Salamanca Bioethics Committee. This gave a detailed explanation of the purpose of the study and information on data collection and processing, pursuant to the Law on the Protection of Personal Data [28]. Participants were clearly informed that they could retract their consent once their parents had signed the form, without needing to provide a reason, and an email contact address was given should they require any further information. Participation was voluntary, and subject availability was respected at all times. To obtain a satisfactory sample, we required a minimum participation rate of between 40 and 50% of class members. We received a response from 276 students from 11 different classes (Table 1). Weight status formed an inclusion criterion: we sought the exclusive participation of individuals classified as "normal weight", "overweight" or "obese" according to WHO criteria [29]; hence, we excluded students classified as "low weight". This yielded a final sample of 235 students divided into 11 networks (Table 2). Network1A-Network5K: Representative code name for each participating network in the study. --- Data Collection Data were collected on gender, SES, anthropometric measurements (weight and height) and contacts in participants' social networks at school between March and December 2015. Nursing staff trained in this procedure, collected the study data in paper-based survey and took physical measurements of the anthropometric parameters. In line with the recommendation of school heads and teaching staff, questionnaires were administered during tutorial classes and weight and size measurements were taken during physical education classes. This latter procedure required a closed changing room, a portable Seca 700 stadiometer (Seca, Hanover, MD 21076, USA) provided by the Nursing and Physiotherapy Department of the University of León and electronic Fagor Slim scales (Fagor, Mondragón (Gipuzkoa), Spain) calibrated to zero for each measurement. --- Variables Gender was considered a dichotomous variable. SES (independent variable) was evaluated using the FAS II questionnaire [30,31], which assesses the family's purchasing power according to the everyday goods purchased. Responses to the FAS II questionnaire were cored between 0 and 3: negative responses were awarded a 0, and this value rises as the number of possibilities increases. The score for the total scale ranges from 0 to 9 and was subsequently grouped into three categories that reflect socioeconomic status. The FAS II has been validated by Boyce et al. and in line with their interpretation criteria, we classified scores 0, 1 and 2 as indicating low SES; 3, 4, and 5 as medium SES; and 6 as high SES [30]. Since an initial statistical analysis indicated that only a small number of participants presented a low SES, we aggregated the two lower levels to form a medium-low SES group, thus creating a dichotomous variable consisting of high and medium-low SES. Once each participant's weight and size data had been collected, we calculated the percentile and body mass index (BMI) according to exact age and gender using the WHO's Anthro Plus®application (World Health Organization, Cyberjaya, Selangor, Malaysia) [32]. Participants were then classified according to their weight status as "normal weight", "overweight" or "obese". Next, we generated a dichotomized variable using normal weight as the reference category and combined overweight and obesity as the second category (to represent excess weight), which we termed overweight. To obtain data about social network contacts (dependent variable), each questionnaire contained a closed list with the names and surnames of other classmates participating in the study, and the following question: "Using the list below, indicate how much time you spend with your classmates", formulated in line with the recommendations proposed by other experts in SNA [18,33]. Since the definition of "peers, classmates or friends" is complex and could seriously affect estimation of its effects when completing the questionnaire [34], we assessed contact intensity by means of time frequencies, using a 5-point Likert scale where 1 = "we never spend time together" and 5 = "we're always together" [26,35]. Please note that from the outset, all personal information that could identify any of the participants was encoded using a simulated name to ensure confidentiality. Peer contact data were used to generate an initial n × n matrix (single-mode or type I network), consisting of students belonging to each class network. Since we wished to study contact intensity, each frequency was assigned a score, and three different adjacency matrices (0/1) were created from the initial matrix, based on three dichotomization criteria: (i) a "minimum contact" matrix, an adjacency matrix where the original value of 1 ("we never spend time together") represented the absence of contact (0) and the values 2, 3, 4 and 5 ("we sometimes spend time together", "we spend quite a lot of time together", "we're almost always together" and "we're always together") indicated the existence of the same (1); (ii) an "intermediate contact" matrix, where the values 1 and 2 ("we never spend time together" and "we sometimes spend time together") indicated the absence of contact (0) and the values 3, 4 and 5 ("we spend quite a lot of time together", "we're almost always together" and "we're always together") represented the existence of a tie (1); and (iii) a "maximum contact" or "friendship" matrix, where the values 1, 2 and 3 ("we never spend time together", "we sometimes spend time together" and "we spend quite a lot of time together") indicated a lack of contact (0), and 4 and 5 ("we're almost always together" and "we're always together") represented the existence of a relationship (1). For each contact intensity matrix, an analysis was conducted of the seven parameters representing social network centrality [36] from a sociocentric or global perspective: (i) outdegree (nominations emitted); (ii) indegree (nominations received); (iii) degree (number of ties that one actor has) [36]; (iv-v) closeness (in/outcloseness) (number of steps that one actor must take to reach another) [37,38]; (vi) betweenness (degree of connections that pass through an actor for one actor to reach another) [37,38]; and (vii) the eigenvector (a measure to identify the most central actors with the shortest distance to the rest of the nodes) [39]. This analysis yielded 21 normalized variables (values in which the ends were relativized) organized dichotomously according to the median for each parameter. --- Statistical Analysis The relationship between SES and the study variables was determined by unconditional logistic regression. In each case, we calculated the odds ratio (OR) with a confidence interval (CI) of 95%. Statistical significance (p-value) was established as p ≤ 0.05. Statistical analyses were performed using SPSS v.23 IBM, Armonk, NY 10504, USA) and network contact data were calculated using UCINET v.6.365 (Analytic Technologies, Inc, Collegeville, PA 19426, USA ) [40]. --- Results Descriptive data for the sample indicated that 49.4% were female (n = 116) and 50.6% were male (n = 119). Participants' ages ranged from 14.0 to 18.1 years old, with a mean age of 15.5 ± 0.9 years old. Mean BMI was 22.1 ± 2.9 kg/m 2 and the mean percentile value was 64.8 ± 24.1. In line with WHO criteria [29], the prevalence of overweight was 25.5% and of obesity 4.7%, indicating a total prevalence of overweight of 30.2%. Regarding SES, the mean score obtained using the FAS II questionnaire was 6.3 ± 1.6, corresponding to a high SES. As can be seen in Figure 1, 29% of the adolescents presented a medium-low SES and 71.1% a high SES. An analysis of the relationship between SES and overweight indicated that students with a medium-low SES presented a two-fold higher probability of being overweight (OR: 2.43; 95% CI: 1.33-4.40; p = 0.003). --- Results Descriptive data for the sample indicated that 49.4% were female (n = 116) and 50.6% were male (n = 119). Participants' ages ranged from 14.0 to 18.1 years old, with a mean age of 15.5 ± 0.9 years old. Mean BMI was 22.1 ± 2.9 kg/m 2 and the mean percentile value was 64.8 ± 24.1. In line with WHO criteria [29], the prevalence of overweight was 25.5% and of obesity 4.7%, indicating a total prevalence of overweight of 30.2%. Regarding SES, the mean score obtained using the FAS II questionnaire was 6.3 ± 1.6, corresponding to a high SES. As can be seen in Figure 1, 29% of the adolescents presented a medium-low SES and 71.1% a high SES. An analysis of the relationship between SES and overweight indicated that students with a medium-low SES presented a two-fold higher probability of being overweight (OR: 2.43; 95% CI: 1.33-4.40; p = 0.003). Regarding reticular data, several density and centralization measures were calculated for each of the studied networks (Table 3). Additionally, the analysis of the social network indicated that overweight adolescents' social ties did not reflect their SES at any of the contact intensity levels (Tables 456). In contrast, a statistical analysis of the overall sample irrespective of weight status revealed significant results at all three levels of contact intensity (Tables S1-S9). At the minimum contact level, adolescents with a high SES were almost twice as likely to present a greater capacity for intermediation (betweenness) (OR: 1.77; 95% CI: 1.001-3.148; p = 0.049), regardless of gender. By way of illustration, node size in Figure 2 represents the capacity for intermediation (betweenness) of adolescents in one of the social networks analyzed. As can be seen, larger nodes were predominantly associated with a high SES. At the intermediate contact level, we found differences by gender, more specifically in female adolescents. Thus, females with a high SES were more than twice as likely to be nominated as friends (indegree) (OR: 2.37; 95% CI: 1.022-5.518; p = 0.042) (Figure 3). At the maximum contact level, considered to represent friendship, we obtained similar results both for the overall sample and for male adolescents. We found that in general, the ease of establishing ties (outdegree) was two-fold higher in adolescents with a high SES (OR: 2.01; 95% CI: 1.126-3.588; p = 0.017). We obtained similar results for male adolescents (OR: 2.60; 95% CI: 1.139-5.962; p = 0.021) (Figure 4). Regarding reticular data, several density and centralization measures were calculated for each of the studied networks (Table 3). Additionally, the analysis of the social network indicated that overweight adolescents' social ties did not reflect their SES at any of the contact intensity levels (Tables 456). In contrast, a statistical analysis of the overall sample irrespective of weight status revealed significant results at all three levels of contact intensity (Tables S1-S9). At the minimum contact level, adolescents with a high SES were almost twice as likely to present a greater capacity for intermediation (betweenness) (OR: 1.77; 95% CI: 1.001-3.148; p = 0.049), regardless of gender. By way of illustration, node size in Figure 2 represents the capacity for intermediation (betweenness) of adolescents in one of the social networks analyzed. As can be seen, larger nodes were predominantly associated with a high SES. At the intermediate contact level, we found differences by gender, more specifically in female adolescents. Thus, females with a high SES were more than twice as likely to be nominated as friends (indegree) (OR: 2.37; 95% CI: 1.022-5.518; p = 0.042) (Figure 3). At the maximum contact level, considered to represent friendship, we obtained similar results both for the overall sample and for male adolescents. We found that in general, the ease of establishing ties (outdegree) was two-fold higher in adolescents with a high SES (OR: 2.01; 95% CI: 1.126-3.588; p = 0.017). We obtained similar results for male adolescents (OR: 2.60; 95% CI: 1.139-5.962; p = 0.021) (Figure 4). As can be seen, male adolescents with a high SES presented greatest centrality according to the degree of ties. Graphs were produced using UCINET software [40]. --- Discussion Our results showed that adolescents with a medium-low SES presented a higher probability of being overweight than those with a high SES. This agrees with several other studies that have reported an inverse relationship between SES and overweight, whereby the lower the SES, the higher the prevalence of overweight [6,8,11,[41][42][43]. One explanation for this finding may be the influence SES exerts on the purchase and/or consumption of certain food products [12,13,44], for example, the high price of healthy products [43,45], the availability of grocery stores in certain neighborhoods offering a variety of products [43], or the possibility of eating homemade food [46]. However, other indicators such as parental educational level can also influence weight status by facilitating or restricting recommended information on this subject [44,46]. It has been shown that a low educational level in parents is related to the development of obesity [10,41,42]. Family structure (separated parents, single-parent family, large family, etc.) is another cultural factor that can influence the weight status of family members [47]. Similarly, the parenting styles according to the SES condition the existence of obesity [46,48]. Furthermore, the influence of the SES on the physical activity has also been proven, finding a greater level of physical activity when the SES is higher [15,49]. Aside from the role of the parents in this fact [50], the physical structure of certain neighborhoods, including their limitations, as the lack of recreational areas or playgrounds [43], the lack of appealing low-traffic zones with green areas [51], or the physical insecurity when practicing outdoor activities [43], can condition the level of physical exercise in the adolescent, according to his socioeconomic status. Nevertheless, other studies have obtained different results to those reported here. For example, Santos found a direct relationship between SES and overweight in Brazilian adolescents, whereby the higher the SES, the higher the prevalence of overweight [52], and Zhang, Zhao and Chu obtained the same relationship in an analysis of Chinese adolescents [53]. One possible explanation that has been suggested for this association is that young people in these countries have greater access to fast food restaurants and make greater use of computers and videogames, promoting obesity and physical inactivity, maybe related to the economic growth experienced by certain countries and the corresponding sociocultural changes. circles represent individuals with a medium-low SES and diamonds a high SES. As can be seen, male adolescents with a high SES presented greatest centrality according to the degree of ties. Graphs were produced using UCINET software [40]. --- Discussion Our results showed that adolescents with a medium-low SES presented a higher probability of being overweight than those with a high SES. This agrees with several other studies that have reported an inverse relationship between SES and overweight, whereby the lower the SES, the higher the prevalence of overweight [6,8,11,[41][42][43]. One explanation for this finding may be the influence SES exerts on the purchase and/or consumption of certain food products [12,13,44], for example, the high price of healthy products [43,45], the availability of grocery stores in certain neighborhoods offering a variety of products [43], or the possibility of eating homemade food [46]. However, other indicators such as parental educational level can also influence weight status by facilitating or restricting recommended information on this subject [44,46]. It has been shown that a low educational level in parents is related to the development of obesity [10,41,42]. Family structure (separated parents, single-parent family, large family, etc.) is another cultural factor that can influence the weight status of family members [47]. Similarly, the parenting styles according to the SES condition the existence of obesity [46,48]. Furthermore, the influence of the SES on the physical activity has also been proven, finding a greater level of physical activity when the SES is higher [15,49]. Aside from the role of the parents in this fact [50], the physical structure of certain neighborhoods, including their limitations, as the lack of recreational areas or playgrounds [43], the lack of appealing low-traffic zones with green areas [51], or the physical insecurity when practicing outdoor activities [43], can condition the level of physical exercise in the adolescent, according to his socioeconomic status. Nevertheless, other studies have obtained different results to those reported here. For example, Santos found a direct relationship between SES and overweight in Brazilian adolescents, whereby the higher the SES, the higher the prevalence of overweight [52], and Zhang, Zhao and Chu obtained the same relationship in an analysis of Chinese adolescents [53]. One possible explanation that has been suggested for this association is that young people in these countries have greater access to fast food restaurants and make greater use of computers and videogames, promoting obesity and physical inactivity, maybe related to the economic growth experienced by certain countries and the corresponding sociocultural changes. With respect to the relational data, little variations have been found regarding the centrality and density data in all the studied classrooms. This fact could be explained by the sociocentric perspective of the study, where each classroom is analyzed with a single system without having into account the existing contacts with other peers outside the class. Furthermore, we also found that overweight adolescents' ties were not modified by their SES but instead were independent of their purchasing power. This fact leads us to think about the lack of homophilic characteristics in the overweight adolescent according to his SES, understanding homophily as the people's preference for interacting with those with similar characteristics [54]. A priori, these results are consistent with the literature, since overweight and obese adolescents present greater difficulty in establishing ties and tend to be more isolated [55]. In light of our results, it seems that SES did not affect overweight adolescents' willingness to establish contacts; it neither increased nor decreased their social capacity. We therefore deduce that it was their weight status which really determined their relational capacity. In contrast, other studies have found that purchasing power conditions social integration, with varying results according to the country where the study was conducted [56]. What our study has demonstrated, however, is that adolescents with a high SES present a significant trend towards socialization, irrespective of their weight status. At the minimum contact level, they occupied positions of intermediation, forming the necessary connections between the different groups established in the class. As the level of contact intensified (intermediate level), we found differences by gender. Female adolescents were more frequently nominated as friends, and thus had the opportunity to expand their social network by accepting these friendship ties. According to literature [57,58] it seems, then, that studied female adolescents are more prosocial regarding these friendship levels, being able to obtain more and greater resources from the network and protecting themselves from exclusion and isolation. At the friendship level, we found that all study participants with a high SES, but males in particular, were better positioned to form ties and therefore to establish support networks. In this regard, authors such as Nieminen et al. have already noted the power of the social environment to condition norms and attitudes that modify behaviors aimed at improving health in general and self-esteem in particular [59]. Having a more extensive support network in adolescence implies having a resource that protects various aspects of health [60]. Difficulties in forming ties can be compounded by SES: individuals with few resources in the social structure are disadvantaged by their dependence on larger networks to access social resources [61], and in turn, the configuration of social networks is conditioned by socioeconomic status. Although networks vary over the course of life according to SES [62], the presence of these deficits at an early age restricts subsequent possibilities for improvement, thus contributing to greater inequality. --- Limitations In this study, we used the FAS II questionnaire to measure participants' SES. This decision could be seen as a limitation for the study, because the most widely used indicators in this respect are the social class, based on the more highly regarded occupation of the father or mother, and the parental educational level [4,46]. The reason for choosing this questionnaire as a SES indicator was, on the one hand, the design adapted to the adolescent population and, on the other, the fact that this questionnaire avoids questions concerning the SES of the parents, which participants may not know or not wish to answer. This way, we circumvented one of the difficulties posed by a study of this nature, namely whether data should be obtained from parents or students. Other limitations found in this work are the small sample size, as well as the lack of evaluation of other variables able to modify the capacity of establishing contacts with peers, and so the difficulty to extrapolate the results to different types of population. Also, the work has not taken into account relationships outside the classroom environment. Although studying the classroom as a social system itself is something inherent to the SNA from a sociocentric perspective, it also supposes an important limitation as contacts with other, external to the classrooms, groups are unknown to the study. --- Conclusions Our study reveals the need to implement macro, meso and micro policies to combat the main problems that arise from having from a lower socioeconomic status (Table 7). In general, improving the life conditions since the early childhood stages, fighting for the equitable distribution of power and wealth, as well as recognizing the problem, measuring it and evaluating the results of the interventions are all necessary to tackle the problem effectively [63]. Equally important is the general public awareness about all the health determinants and especially this one [64]. We must, then, reconsider, and give constructive criticism, about the strategies set up at every action level, studying and analyzing what has been implemented and what has not, and keep working for an equitable community. This work highlights the social consequences of the SES at early ages, supposing this result a limitation regarding the establishment of the contact network and so a decrease in the acquisition of resources provided by the community. Having a low SES at an early age, indicates the need for actions that target children and adolescents, as well as adults, to reduce social inequalities [63,65]. It is, therefore, essential to improve the social networks of disadvantaged groups so as not to impede or hinder access to different resources precisely among those populations that need them most. Moreover, we have noticed a clear gap in the literature regarding this issue, what reveals a need for a greater amount of studies that can explore social networks and SES both in children and adolescents. Own compilation based on literature [63,66,67] --- Supplementary Materials: The following are available online at http://www.mdpi.com/1660-4601/15/9/2014/s1, Table S1: Estimation of probability of the relationship between SES in the overall sample and network parameters, at the minimum contact intensity level. Table S2: Estimation of probability of the relationship between SES in the overall sample and network parameters, at the intermediate contact intensity level. Table S3: Estimation of probability of an analysis of the relationship between SES in the overall sample and network parameters, at the maximum contact intensity level. Table S4: Estimation of probability of an analysis of the relationship between SES in the female gender of the overall sample and network parameters, at the minimum contact intensity level. Table S5: Estimation of probability of an analysis of the relationship between SES in the female gender of the overall sample and network parameters, at the intermediate contact intensity level. Table S6: Estimation of probability of an analysis of the relationship between SES in the female gender of the overall sample and network parameters, at the maximum contact intensity level. Table S7: Estimation of probability of an analysis of the relationship between SES in the male gender of the overall sample and network parameters, at the minimum contact intensity level. Table S8: Estimation of probability of an analysis of the relationship between SES in the male gender of the overall sample and network parameters, at the intermediate contact intensity level. Table S9: Estimation of probability of an analysis of the relationship between SES in the male gender of the overall sample and network parameters, at the maximum contact intensity level. Author Contributions: Conceptualization, Natalia Arias and José Alberto Benítez-Andrades; Formal analysis, Natalia Arias, José Alberto Benítez-Andrades and Beatriz Alonso-Cortés; Investigation, María Dolores Calvo, María José Álvarez and Carmen Benavides; Methodology, Natalia Arias, Beatriz Alonso-Cortés and Carmen Benavides; Resources, María Dolores Calvo and María José Álvarez; Supervision, María Dolores Calvo; Validation, José Alberto Benítez-Andrades; Writing -original draft, Natalia Arias, José Alberto Benítez-Andrades, María José Álvarez, Beatriz Alonso-Cortés and Carmen Benavides. Funding: This research received no external funding. --- Conflicts of Interest: The authors declare no conflict of interest.

99d32758db6d4dee70d4709f9ea58574d5714234

Helping Me Helping You: Designing to Influence Health Behaviour through Social Connections

Of key importance to avoiding significant health problems such as cardiac disease and stroke is eating nutritious foods and leading an active lifestyle. However, leading a healthy lifestyle remains elusive and obesity continues to increase in North America. We investigate how online social networks (OSN) can change health behaviour by blending theories from health behaviour and participation in OSNs. We designed, prototyped and evaluated an OSN, called VivoSpace, using factors derived from the blend of theoretical models with the intention to change health behaviour. Our results from field studies with 35 participants from two clinical and one non-clinical social network groups revealed that designing these factors into the online social network lead to positive health behaviour change, namely, improved diet for the clinical group. The use of theoretical models in the evaluation provided a means to understand how the design can be improved to see further health behaviour change.

Introduction The importance of a nutritious diet and an active lifestyle has been found to be central to a healthy population, which leads to lower healthcare costs for a nation and a better quality of life for its citizens. Specifically, a healthy diet and physical activity can reduce advancement of (and prevent occurrence of) chronic diseases [2], prevent vascular diseases such as cardiac disease and stroke [22,7,15], and result in overall better health [31]. Despite greater medical and scientific knowledge, North Americans continue to be more obese due to poor diet and a sedentary lifestyle. We address this problem through the design and evaluation of an online social network (OSN), grounded in theoretical models, to improve nutrition and increase physical activity. In addition to diet and physical activity, a significant factor in health outcomes is one's close and distant social networks [8,23]. Social supports can promote better health by providing a sense of belonging and building self-efficacy [6]. Social technology has been shown to increase social support for individuals afflicted with a particular condition, such as ACL (Anterior Cruciate Ligament) [25], ALS (Amyotrophic Lateral Sclerosis) [13] and menopause [36]. Furthermore, the social dynamics for peer involvement in weight management include supportive relations and passive involvement (such as social norms), and observed patterns of interaction such as (un)disclosure [24]. Studies have realized the benefits of social connection by designing technologies for health and weight management, which we review in detail in the Related Work section. Recently, social connection through websites and other web enabled technology have had an explosion of engagement and use, namely in use of OSN services such as Facebook®. We leverage this engagement as a means to build social support in the design of our OSN for health behaviour change. We also take heed of studies that have shown we need to be cautious in using large OSN services such as Facebook® for our health needs, as issues of sharing private health information on such a large social network service does not make sense [29,33]. We build on these works by designing an OSN for small social network groups rather than using existing OSN such as Facebook®. This is done to allow users to share their nutrition and physical activity data with individuals from a known social network group rather than a large social network that would broadcast their data to a diverse range of individuals known from various sources. A small social network group allows users to have control over who sees the information that is disclosed. The main contribution of this work is to apply two theories to the design, prototyping and evaluation of an OSN, VivoSpace, for health behaviour change. We combine the Social Cognitive Theory from health behaviour that underpins the importance of social aspects of healthy living with the Uses and Gratifications Theory that provides motives for participation in OSNs. The justification for this approach is that our OSN needs to be engaging in order for it to be used, so we look to the Uses and Gratification Theory to provide the factors that motivate use of OSNs [17,19]. Similarly, the factors for health behaviour change from the Social Cognitive Theory [4] are also applied to the design with an aim to change health behaviour. This theoretical approach is undertaken to create better design principles that help people to both start and maintain healthy habits. Others have used health behaviour theories to design technologies for motivating increased physical activity, improved nutrition, or both; however, the factors from the Social Cognitive Theory have not been directly used to design and evaluate technology to promote positive health behaviour. Furthermore, the Social Cognitive Theory has never been combined with the Uses and Gratification Theory to ensure engagement in the technology. Finally, OSNs have not been explicitly designed for the purpose of health behaviour change before. This work informs research in both HCI and Persuasive Technologies [12], and guides the design of the multitude of applications that are coming to market for fitness and improved diet. In our design of an OSN, VivoSpace, we chose to focus on healthy eating and physical activity as both are closely linked to health outcomes such as ideal weight, prevention of illness and management of chronic diseases [7,2,15]. We are not focusing on weight loss specifically, but rather nutritious eating habits and physical activity over sedentary lifestyle. We deployed VivoSpace to three separate social network groups in both Canada and the United States in a 4-week study with 35 participants. We use the factors from the theories to create design elements that ensure engagement in VivoSpace and changes in health behaviour. In providing this contribution, the main outcomes of this study are: 1) an understanding of different social dynamics in small social network group through use of an OSN for healthy; and 2) details of design mechanics in an OSN that influence health behaviour and motivation to continue to use the website. --- Foundational Theories Theoretical models assist us to understand human behaviour. The theories used in our approach to design, prototype and evaluate VivoSpace are the Social Cognitive Theory and the Uses and Gratification Theory. Various HCI researchers have considered the Social Cognitive Theory in designing social technologies to influence health behaviour change (as described in the Related Work Section). We build upon previous works by utilizing the Social Cognitive Theory as a foundation for our design and evaluation. We did not directly use other health behaviour theories in our approach, as we wanted to provide clarity in linking factors for health behaviour change from the theory to the design. Further, as engagement in the technology is necessary for the system to be used, we apply the Uses and Gratifications Theory to derive design strategies for motivating the use of the OSN. In other words, the OSN needs to be used in order for the design elements for health behaviour change from the Social Cognitive Theory to be effective. --- Social Cognitive Theory The Social Cognitive Theory holds that behaviour is determined through expectancies and incentives, and of key importance is self-efficacy to changing health behaviour [3,4]. The Social Cognitive Theory [4] was first drawn from the Social Learning Theory by [3], and it was further developed into five core determinants of health behaviour change: 1. Knowledge is an individual's knowledge of and expectations of outcomes related to the health risks and benefits of different health practices. 2. Perceived Self-Efficacy is an individual's own competence to perform the behaviour needed to influence outcomes and the individual's ability to exercise control over one's health habits. Perceived Self-Efficacy can be influenced vicariously through others, which allows for social modeling and the building of social norms. 3. Goals include proximal and distal goals, and they need to be concrete plans and include strategies to realize them. This factor builds accountability. 4. Perceived Facilitators include social and structural factors, and social approvals and social supports can be facilitators. They incorporate the value of the outcome of health behaviour change, which can be health, appearance, social approval, or economic gain. 5. Perceived Impediments is the opposite of perceived facilitators, and they also include both social and structural factors. --- Uses and Gratification Theory The Uses and Gratifications Theory originated from communications research and is generally recognized to be a sub-tradition of media effects research [28]. Initially, it provided a theoretical approach in defining the motivations for using traditional mass media such as newspaper, radio and television [35]. It has received renewed interest because of its applicability to telecommunications, computer-mediatedcommunication [34,11] and the Internet [30]. It has also been applied to online communities [11,19], and more recently, uses and gratifications has been studied to understand the motivations for using Facebook® [17]. We consider five key works based that present motivational factors based on the Uses and Gratification Theory on their application to the Internet, online communities, and OSNs [11,19,30,35,17]. By reviewing these works, we find that there are eight main motivational factors that influence use of OSNs based on the Uses and Gratification Theory: 1. Entertainment refers to a motivation that stems from enjoyment of playing or interacting with others [30,11,19], and also encompasses Diversion [35] and the need to Pass Time [30]. 2. Social Enhancement is a value that one ties to their status within social peers [11,17], and is also linked to Social Utility [35] and Interpersonal Utility [30]. 3. Maintaining Interpersonal Connectivity pertains to sustaining contact with one's social networks [11,19], and it also relates to Social Utility [35] and Interpersonal Utility [30], or as Joinson describes as Social Connection [17]. 4. Self-Discovery occurs when self-knowledge is obtained through social interaction [11,19], and it includes Personal Identity, which is a reinforcement of ones values, attitudes and beliefs [35]. 5. Get Information is an instrumental purpose like receiving information [11,19], and it can also overlap with Information Seeking [30] and Surveillance [35]. It also suggests social sharing, which includes factors such as Content Creation and Curation, Social Network Surfing, and Social Investigation [17]. 6. Provide Information is democratized with online communities and OSNs compared to previous media, and refers to a motivational factor that is unique from Get Information [19]. In OSNs, we see Status Updating [17] as a specific means of Providing Information. 7. Convenience provides an understanding of why people would choose to use the Internet as opposed to read the newspaper, or socialize via an OSN service as opposed to meet in person. This factor was only described by [30]. 8. Shared Identity occurs as one constructs their identities through the use of an OSN and relates to others through shared interests and values [17]. --- Related Work Although OSNs have not been studied specifically for health behaviour change, technologies with social components designed for health behaviour change have been explored by HCI and Persuasive Technology communities. We build on this work by specifically looking at the design of OSNs through the use of theoretical models. Some of the works that have incorporated social aspects in their design have considered the Social Cognitive Theory. We also review studies that investigated social aspects of health behaviour without consideration of the Social Cognitive Theory. Finally, we present some works that did not investigate social aspects for health behavour change as a central component of their study, but their results informed our work. A description of all these studies is presented in Table 1. There are no works that combined the Social Cognitive Theory with the Uses and Gratification Theory to design of an OSN for health behaviour change. Table 1. List of related works showing the name of the application developed, description of the application, and the number of participants (p) and duration of the evaluation --- Application Name Description Evaluation Stepping Up for Health (SUH) [34] Internet mediated walking program that measured the impact of adding an online community on the walking habits of individuals. --- p ,16 wks VERA [5] Users take pictures at moments when they make health decisions and provide annotation about the picture's relation to health. --- p, 2 wks; 44 p, 4 wks Shakra [1] Mobile phone application infers whether the user is still, walking or traveling in a car, and provides and shares the amount of time that the user was active with some competition features. 9 p, 1 wk Fish'n'Steps [21] Links users' step counts to the growth and happiness of a virtual fish. --- p, 14 wks Houston [9] Pedometer and mobile phone application that allows users to set goals. It includes a sharing version and a personal version. 13 p, 3 wks --- Lifestyle Coaching Application [14] Smart phone and website version where users diary their food and physical activity, set goals and provide a points system for a game experience. --- p, 4 wks EatWell [16] Social mobile phone application designed to assist African American communities make better food choices, where users share audio recordings of experiences related to food. 12 p, 4 wks Chick-Clique [37] Mobile application provides sharing of step counts, visibil- ity of group averages, and text messaging capability. 7 girls, 4 days MAHI [27] Mobile application to communicate with one's diabetic educator. 49 p, 6 mo. UbiFit Garden [10] Wallpaper of the users cell phone shows a garden. Flowers appear with more physical activity, and it shows butterflies as goals are met. 12 p, 3 wks; 28 p, 3 mo --- IMPACT [20] A step-count personal informatics system that is evaluated to understand the influence of context on step count. --- p, 8 wks Fit4Life [33] A mock design of a health system that collects dietary and activity level, shares on OSN sites, and provides advice. --- N/A Since the Social Cognitive Theory postulates that health is a social matter and not just an individual one, we look at three works that have considered this theory in the design of their technologies. First, the SUH [34] study considered social support and social modeling from the Social Cognitive Theory to explain how the online community experimental group can promote increased step count and lower attrition. The study found that individuals were more engaged and participant attrition was lower with those that used the online community version. However, the Social Cognitive Theory was not central in the design and evaluation of SUH. Second, the VERA system [5] showed that the social aspects allowed participants to mimic others, and that the system built group identity and allowed for greater accountability. Although the authors did mention that the design of VERA was consistent with social modeling and accountability aspects from the Social Cognitive Theory, the use of the theory was not central in the design and evaluation. Third, the Shakra [1] system loosely based the social aspects of their design on the Social Cognitive Theory to show that community was important to health behaviour. Shakra did not show any increase in activity, but the participants enjoyed the sharing and competition aspects. We expand the use of the Social Cognitive Theory by anchoring the design and evaluation of our OSN on factors from the Social Cognitive Theory as well as the Uses and Gratification Theory. Other HCI researchers have done significant work in considering social aspects when designing health technologies without the use of the Social Cognitive Theory. The results from these studies are mixed; however, the social aspects did lead to building community empowerment and social supports. The Fish'n'Steps [21] used the Transtheoretical Model to evaluate the stage or level of health behaviour change of the study participants, but did not use the theory in the design of the system. The Houston [9] system showed those that used the sharing version met their goals more often than those that used the personal version. The Lifestyle Coaching Application [14] revealed no significant difference between mobile and web versions, or individual and team player groups. The qualitative analysis for EatWell [16] revealed that the use of the system led to a sense of empowerment for the community, as users were from the same geographic location. Chick-Clique [37] showed an increased step count for one group, but not the other, due to confounding reasons. Finally, the MAHI system allowed for social support for newly diagnosed diabetics [27], and a means to construct one's identity for those that have been living with diabetes for more than one year [26]. The variable results can be better understood with the use of theoretical models in the design and evaluation of these systems, which can provide insight into how these systems were successful in achieving health behaviour change and how they can be improved. The HCI community produced other works related to health behaviour change that inform our study, where social aspects did play a role in their work although it was not a central part of their study. First, the UbiFit Garden [10] took a theoretical approach to develop design strategies for health behaviour change; however, different theoretical models were used and the UbiFit Garden was not an OSN, so our work extends this approach to the design of an OSN to change health behaviour. Secondly, the IMPACT system was created to better understand the influence of context on personal health informatics [20], where social influence is a critical part of context. Finally, another work that deserves mention is a mock parody design called Fit4Life, which shows the importance of mindfulness in understanding our behaviour, and the privacy concerns of posting our health behaviours on large OSN services such as Facebook® [33]. Uses and Gratifications Theory, we designed VivoSpace. The VivoSpace system provides features that promote eating healthy foods and engaging in physical activity because both are important to good health behaviour. The design of VivoSpace was developed through a User-Centered Design process, initially with paper prototypes that were evaluated using one-on-one interviews with 11 people, and then with a medium-fidelity prototype that was evaluated in a laboratory with 36 people [18]. These studies revealed that the VivoSpace design allowed for greater understanding of one's health behaviour, but social gaming features were needed to build motivation to use the system. Finally, this high-fidelity prototype was tested with seven individuals using a cognitive walk-through prior to the field study described in this paper. The high fidelity prototype was developed using PHP and MySQL within the CodeIgniter application framework. Twitter's® Bootstrap was used for the user interface elements and Doctrine PHP libraries were used for the database abstraction layer. Furthermore, VivoSpace incorporates Wolfram Alpha's® Application Programming Interface (API) to obtain nutritional information for meals and caloric expenditure for physical activities logged. When the API cannot return the nutritional information, a site administrator enters the correct information based on web searches, which we anticipate will eventually be crowd-sourced. --- Fig. 2. Left: the nutritional content of a meal is displayed when the logged meal is clicked. Right: goal details show the user's and participating friend's progress towards the goal target. VivoSpace has three main components: logging, goals, and a personal dashboard. The main home page of VivoSpace is shown in Fig. 1. Users have the ability to log their meals, physical activity and weight. After users log their meals, the nutritional content of the meals is available when they click on the name of the food (Fig. 2. left). Similarly, when they log a physical activity, the caloric expenditure is available. Users have the ability to make a log private or to share it with their social network. The newsfeed shows the log entries for themselves and their friends (we will use the word "friend" to refer to social connections on VivoSpace). The shared log entries allow for commenting between the individuals in the user's social network. The historical trends for calories consumed, calories burned, and each nutrient is charted on the dashboard, which is always visible on the left side of the home page. User's can customize their targets for each of the nutrients or use the defaults, which are based on US and Canadian national standards. Users also have the ability to create concrete proximal goals from a library of goals such as walk for 60 minutes over 2 days, or eat 35 g of fiber over 3 days. They can invite friends to participate in their goals with them. The goal progress is shown on the home page, and details are shown when the user clicks on the goal (Fig. 2. right). VivoSpace also provides the following gamification features: users earn small experience points (XP) by using VivoSpace and major experience points for successfully completing goals. Users progress through 10 levels with each level requiring more points to advance to the next level. Furthermore, each level reveals a new character. These design elements are developed based on the factors from the Social Cognitive Theory and the Uses and Gratification Theory, which are mapped on Table 2. --- 5 The Study The VivoSpace OSN provides design mechanics that should promote motivation to use the system, as well as promote health behaviour change by applying factors from the Uses and Gratifications Theory and the Social Cognitive Theory (respectively). We evaluated VivoSpace in a field study with three separate social networks in both Canada and the United States. This study's contribution is the application of theories to design and evaluate an OSN for health behaviour change. Since we look at three distinct social networks, we provide a discussion on how different social dynamics within a social network contribute to healthy behaviour through the use of VivoSpace. We provide details for which design elements contribute to positive health behaviour change within VivoSpace, and how the design can be modified to further contribute to health behaviour change. Perceived Self-Efficacy Seeing historical log entries and charts of nutrients consumed on the dashboard shows one's capability to eat healthy and be physically active. Also seeing the log entries of others builds selfefficacy vicariously through others by social modeling. --- Goals Proximal goals can be created and they are always visible at the top of the homepage. Distal goals are achieved through the charts (on dashboard) displaying historical trends and targets. --- Perceived Facilitators Visibility of others' activities allows users to mimic behaviour, and the commenting on shared entries provides dialogue for encouragement. The gaming features provide motivation. Perceived Impediments The commenting feature on shared log entries can provide dia- logue with one's friends to overcome barriers. --- Uses and Gratification Theory Entertainment The gaming features include the accumulation of experience points and advancement through 10 levels. --- Social Enhancement Social enhancement is provided by: 1) visibility into the level obtained by one's friends; 2) visibility into the shared meals of one's friends; and 3) participating with a friend on a goal and seeing their progress towards the target. --- Maintaining Interpersonal Connectivity Social connection is provided through the ability to comment on friends' log entries and participate with friends on goals. --- Self-Discovery Ability to see the nutritional value of foods eaten and caloric expenditure for physical activity and the historical trends on the dashboard allow users to discover their health behaviour. --- Get Information Nutritional information is obtained for each log entry, and historical information is available on the dashboard. --- Provide Information Information is provided through logging of meals, physical activity, and weight, and through commenting on friend's entries. --- Convenience Obtaining the nutritional value of foods and caloric expenditure of physical activity, and having a historical storage of one's nutritional information provided convenience of access to information. --- Shared Identities Through the sharing of one's meals and physical activity, and allowing friends to comment on these entries. --- Methods Recruitment and Participant Overview. We recruited a total of 35 participants from three different settings including clinical and non-clinical settings. For the clinical groups, we considered patients that are associated with the same clinic, share the same geographic location, and are generally from the same socioeconomic status, as was found to be important by Grimes et al. [16]. The first group of participants from a clinical setting was recruited from a primary care clinic in suburban Chicago, which has a focus on wellness and weight loss. A total of 22 participants were recruited by sending an email through the clinic's patient portal. Half of the participants were randomly assigned to the control group and the other half to the experimental arm. The participants in the experimental group used VivoSpace during the 4-week study period, while participants in the control group did not use VivoSpace. The reason for having a control group was to control for newly acquired health behaviours from association with the clinic. The second group of participants from a clinical setting was recruited from an integrative medical center in Vancouver, Canada. This clinic provides a focus on prevention and partnership between physician and patient. Participants were recruited from their medical-group-visit patients, where patients meet with a physician as a group, so they already take advantage of social aspects to good health. A total of 3 participants were recruited from this clinic. The small number reflects the limited number of patients that take part in the medical group visits, and it means that we could not have a control group for this clinic. The participants were recruited through direct email contact from the clinic. The non-clinical group of participants was a close-knit group of colleagues at a small software gaming company in Vancouver Canada, where all the employees have good knowledge of each other. A total of 10 participants were recruited by directly asking the employees of the company. The company has a total of 35 employees. There was no control group for the non-clinical group, as they were not associated with a wellness or integrative medical clinic, and we used the results from the prequestionnaire (see Measures section below) to evaluation their health without VivoSpace. A total of 35 participants were recruited from three groups: Chicago clinic (11 in experimental group and 11 in control group), Vancouver clinic (3), and the nonclinical group from the Vancouver gaming company (10). Out of the 22 participants recruited from the Chicago clinic, 3 dropped out prior to the end of the study. One was in the experimental group, and the other two were in the control group. Table 3 shows an overview of the remaining participants from all three groups. Overall, there is a bias towards women. Furthermore, the participants from the non-clinical group were younger than those from the clinics, and this group ranked their health better than those from the clinics (health was ranked on a 6-point Likert scale, where 1=very unhealthy and 6=very healthy). Participants from each group were asked to friend each other, but there was no friending across the social networks, so that we could evaluate the social dynamic within each group. All participants received a $50 honorarium. Measures. All participants completed a pre-questionnaire prior to the start of the study and post-questionnaire after the 4-week study period. The questionnaires both had the following: 1) current health behaviour; 2) knowledge test of nutrients; and 3) 5-point Likert questions that linked back to the factors from the Social Cognitive Theory. The post-questionnaire for those participants that used VivoSpace also included the following: 1) 5-point Likert questions that linked back to the factors from the Uses and Gratification Theory; and 2) open-ended qualitative responses about their thought on VivoSpace and how it contributed to health behaviour change. Change in health behaviour was analyzed through comparison between the pre-and post-questionnaires. The first set of questions that inquired about health behaviour included: questions about height and weight to obtain a body-mass-index in order to assess if the participant was overweight or obese; the number of salads, vegetables, fruits, French fries and potato chips that they ate in the past week (no other foods were enquired about); and how often they walked, performed cardio exercise, and other physical activity in the past week. The current stage in health behaviour change from the Transtheoretical model was also inquired, as was done by [9,21,23]. The Transtheoretical Model defines the stages of change as pre-contemplation, contemplation, preparation, action, and maintenance [32]. The second set of questions was a 10-question multiple-choice test on the meaning of nutrients to assess knowledge. They included question such as, "What foods have the highest fiber content?" The answers included: a) whole wheat breads, beans, and vegetables; b) any breads and cereal grains; c) whole wheat bread and meats; and d) all of the above. The third set of questions was 5-point Likert style questions that asked for the level of concurrence on statements that mapped to the factors from the Social Cognitive Theory. For example, the statement for perceived self-efficacy for eating nutritious foods stated, "I am capable of eating highly nutritious foods and resisting unhealthy foods." The 5-point Likert questions ranged from "strongly disagree" (1) to "strongly agree" (5). The post-questionnaires for those participants in the experimental group also included 5-point Likert questions for the eight factors from the Uses and Gratification Theory. The post-questionnaire also inquired about which design features of VivoSpace contributed to the factors from the Social Cognitive Theory. For example, after the afore mentioned Likert question on perceived self-efficacy, another 5-point Likert statements inquires concurrence with, "I was able to learn about my capabilities by logging my meals on VivoSpace" The open-ended qualitative responses included general thoughts on VivoSpace and how it can be improved to motivate use and health behaviour change, and specific responses for how it can provide factors from both theories more effectively. --- Results The results cover the following: 1) whether the incorporation of the Uses and Gratification Theory into the design encouraged use of VivoSpace; 2) whether the incorporation of the Social Cognitive Theory led to an increase in the self-report on the five factors from this theory; 3) and if there was any observed change in health behaviour at the end of the 4 weeks. Analysis includes statistical comparison of pre-and postquestions as well as qualitative analysis of open-ended free form questions. --- Overview of System Use The use of VivoSpace over the 4 weeks varied substantially. All 23 participants that were using VivoSpace created an account and friended others from their network group. The participants from the non-clinical group (Vancouver gaming company) used it more than those from the Chicago clinic, which can likely be attributed to this group's ease with technology. One participant from the Vancouver clinic used the system the most. Table 4 shows an overview for usage of VivoSpace for all three groups. The nonclinical group was less inclined to share their entries than those from the clinical groups. The comments included: encouragement about the post, "good job!" and "Woot!"; additional information about the food or activity entered, "Santa Cruz organic added to Perrier"; or their feeling about the activity, "I love Thai food, yum". The questionnaire also inquired about each participant's perception of use based on the eight factors from the Uses and Gratifications Theory. The results of the 5-point Likert responses for all three groups are shown in Table 5. The strongest factors for motivating use were to Provide Information and Self-Discovery for all groups; however, interestingly Shared Identity was strong only for the loose social connections of the clinical groups. Although the Likert response for to Get Information was a bit lower with mean of 2.67 for the non-clinical group, the qualitative responses showed that they did use it to receive information; for example, "I liked watching my vitamin consumption over time" (P9). The qualitative responses for the Chicago clinic revealed sentiment for the Shared Identity motivational factor; such as, "I liked being supportive to like minded people achieving goals"(P32). The Vancouver clinic had one active user, who was the heaviest user of VivoSpace. She continued to use it on a daily basis despite the fact that the she did not have the full social experience of Vi-voSpace. This user had some mistrust in the nutritional and energy expenditure information that was provided by VivoSpace, "I'm not sure how accurate the nutritional and calorie burning info was, and I think that more detailed information would need to be made available for it to be useful" (P31). With respect to Self-Discovery, she said, "It was interesting to be accountable; it made me think more about it" (P31). Perceived Self-Efficacy. A central concept to the Social Cognitive Theory is Perceived Self-Efficacy. The paired t-tests for all groups showed a statistically significant increase between the pre-and post-questionnaires' 5-point Likert scale inquiry into one's Self-Efficacy (Fig. 3). The greatest increase was observed for the Chicago clinical experimental group and the smallest increase was observed for the non-clinical group. However, these results need to be taken with caution, as the control group from the Chicago clinic also showed an increase in Perceived Self-Efficacy, which perhaps means that there were other factors contributing to the increase in self-efficacy such as association with the Chicago clinic. For those using VivoSpace, we also inquired about the aspects of VivoSpace that contributed to their self-efficacy. Generally, the participants felt that logging their meals and physical activity can lead to increasing their understanding of their capability. --- Goals. The statistical analysis revealed no significant difference. The qualitative responses showed that users wanted to be able to customize their goals, "most of the goals currently in the system were not appropriate for me so there was nothing for me to do with other members" (P7). Making the goals more social and more central to the system also can contribute to more creation and completion of health goals, as one participant says, "putting [the goals] out there for people to see" (P32). Perceived Impediments and Facilitators. No statistically significant difference was observed for either decreasing perceived impediments or increasing perceived facilitators. Most users of VivoSpace felt that the system's ability to provide their nutritional information does assist them to reduce impediments or increase facilitators. However, as one participant points out, time constraints are the biggest impediment to healthy behaviour, and logging one's information on VivoSpace takes time (P28). This perhaps shows the need for the system to have reminders, as suggested by P1. There were some features that some participants found to be facilitators: "I like having the charts to show my progress; especially seeing my weight line go down" (P28); and "nutritional information regarding foods I was eating helped push me to keep cooking those foods or avoiding other foods" (P9). --- Changes in Health Behaviour There was health behaviour change observed between the pre-and post-questionnaires for the Chicago clinic experimental group and a strong trend toward health behaviour change for the other two experimental groups. The Chicago clinic experimental group increased the number of salads they ate in a week with a mean difference of 1.0 (t=2.65, p<0.05). For the non-clinical group, the number of servings of potato chips (and similar foods) consumed in a week went down with a mean difference of -0.56 (t=1.89, p=0.095). For the clinical group (combination of both clinics), we saw a strong trend toward a positive move in the stages of change from the Transtheoretical Model [32] with a Wilcoxon Signed Ranks test (Z=1.84, p=0.066). By comparison, there was no health behaviour change observed in the Chicago clinic control group. --- Discussion An OSN can change health behaviour if it is designed with features that influence factors from theoretical models. The results for health behaviour change do not show large changes, but the small steps towards healthier living are encouraging because positive health behaviour change did occur in some way for each of the experimental groups, and did not occur for the control group. The maintenance of these new behaviours is not known at this time, but would be important to investigate further. By evaluating VivoSpace with the use of the Social Cognitive Theory and Uses and Gratification Theory, we can better understand which design elements contributed to health behaviour change; furthermore, the results reveal the factors from the theories that were not provided in the design of VivoSpace, which provide possibilities for design improvement. Logging meals and physical activities to reveal the nutritional value of meals and caloric expenditure of activities combined with charts showing trends of calories and nutrients consumed build perceived self-efficacy. The greatest increase in self-efficacy was observed in the Chicago clinical experimental group, which suggests that the process of logging meals and physical activity does build self-awareness. By logging health information, users become more accountable and aware of their capabilities. The design can be improved by also providing nutritional information for foods not eaten) and having tailored messages for how to improve health behaviour to build knowledge. The qualitative results show that the design can be modified to promote an increase in knowledge of nutritional value of food and energy expenditure of physical activities. The participants suggested that VivoSpace could assist them to make decisions about food, so it should have the ability to obtain nutritional information for foods that were not eaten. Further, VivoSpace can be more prescriptive and provide tailored messages for how the user can make healthier choices. Providing reminders for goals and allowing for customizable goals will increase user engagement. The goals feature on VivoSpace should provide reminders to the users after they are set, and goals should be more central in the design. A key change to the goals feature would be to allow users to create customized goals, as the rigidity of the goals provided on VivoSpace led to fewer people creating goals. These changes will increase Social Enhancement and make the system more Entertaining; both of which are factors for motivating use from the Uses and Gratification Theory. Email notifications should be provided when comments are made to one's log entries, and a link should be provided to the log entry and the comment. VivoSpace should provide notifications when comments are made to their posts, or when one responds to one's existing comment. This will increase dialogue between participants, which will build social supports to allow for an increase in the motivation to Maintain Connectivity from the Uses and Gratification Theory and Perceived Facilitators from the Social Cognitive Theory. Design should include a mobile version and other conveniences such as automatic sensing to ease the time required to use it. The time that was required to enter the data was a contributing factor for some participants to ask for easier means of entering their data. A mobile version and linking to devices such as fitbit® to automatically sense steps taken can ease the burden of data entry. The differences observed between the clinical and non-clinical groups show the potential to use an OSN such as VivoSapce with clinical groups. Overall, both clinical groups disclosed their log entries more than the non-clinical group, and the group from the Chicago clinic saw observable changes in health behaviour. Furthermore, both clinical experimental groups saw the greatest increase in self-reported selfefficacy. The Chicago clinic experimental group showed greater social motivation to use VivoSpace compared with the non-clinical group. --- Conclusions An OSN called VivoSpace was designed and prototyped based on factors derived from the Uses and Gratifications Theory for use of the OSN, and the Social Cognitive Theory for health behaviour change. Through a 4-week field trial with three social network groups, we used these theories combined with usage data and health behaviour data to evaluate VivoSpace. We were able to determine the design elements through the application of these theories that will lead to use of the system and changes in health behaviour. The study also revealed opportunities to improve the design, so more significant health behaviour change can be observed. We found that a close-knit non-clinical social network group interacts with the system differently than a group of strangers from the same clinic. An OSN such as VivoSpace can be applied to clinical groups, who are associated with the same primary care clinic to improve health behaviour. OSNs such as VivoSpace can provide a health intervention to populations with the greatest need to change health behaviour leading to a healthier population. The use of theoretical models provides an effective means to design and evaluate technologies for health behaviour change.

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Migrant physicians’ choice of employment and the medical specialty general practice: a mixed-methods study

Objective: In many countries, migrant physicians (MP) tend to fill staff shortages in medical specialties perceived as low status. The aim of this study was to explore aspects that influence MPs' , with a medical degree from outside EU/ EEA, choice of employment and medical specialty in Sweden, and to explore and understand a potential over-representation in general practice (family medicine), a specialty suffering from staff shortages in Sweden. Methods: A mixed-methods approach was applied. This included questionnaire data from 101 MPs training and working as medical specialists in Sweden and semi-structured interview data from four MPs specializing in general practice. Results: Regardless of specialty, the most influential aspects when choosing employment were the ability to combine work with family, to develop one´s competence, and to have highly competent colleagues. Women scored higher on some aspects related to private life and the surroundings. More than half (55%) of the respondents specialized in general practice, and more women than men. The MPs in general practice scored higher on the aspect 'ability to have the same patients for a longer period' than MPs specializing in other specialties. No significant difference between MP general practitioner respondents and MPs in other medical specialties was found in relation to the item 'Was the specialty your first choice?ʼ. Aspects identified in the interviews that influenced the choice to specialize in general practice related to job opportunities, positive experiences of primary health care, working conditions, and family conditions.Labour market conditions such as high competition, and the time-consuming recertification process, can influence the choice to specialize in general practice as this reduces the time to become a medical specialist. We however did not find any results indicating that MPs' decision to specialize in general practice and to work as general practitioners was any less voluntary than that of MPs who chose other specialties.

Introduction Many migrant physicians (MP) who arrive in their destination country intend to continue their professional careers as medical specialists. However, in some Western countries, MPs tend to fill shortages in medical specialties and sectors that are perceived as 'low status' [1][2][3][4][5]. This might suggest an inequality and imbalance in the medical specialty labour market based on the country in which a physician obtained their medical degree (cf. [4]). Further, this may indicate that MPs have fewer opportunities and decreased autonomy to choose their desired employment and specialty compared to their domestically trained peers, which can adversely impact their motivation, well-being and work-life sustainability (cf. [6,7]). Therefore, it is imperative to explore MPs' employment and specialty choices and the aspects that influence their decisions. Choosing a medical specialty is an extensive individual process that often starts during medical school [7] and is often influenced by social background and family upbringing [8], gender, demographics, lifestyle compatibility, working conditions, and salaries [9]. Interest in treating specific types of patients and medical conditions also influences the choice of specialty [8][9][10], as do personality traits [11][12][13]. In addition, a specialty's perceived status and prestige can impact the choice of specialty [8][9][10]13]. Surgical specialties, for instance, afford high status and prestige, while psychiatry often does not [8,10,14]. Moreover, low-status specialties, such as general practice (family medicine), psychiatry and geriatrics, usually suffer from staff shortages [8-10, 13, 15]. The hierarchy of medical specialties has previously been analysed and discussed through the lens of Bourdieu's concepts of social field, symbolic capital and habitus [8,10]. A social field is constructed by a group of individuals and institutions with joint interests that are struggling over resources (capital) (cf. [7,10,16]). By gaining capital (social, cultural, economic), recognized as symbolic capital, individuals are hierarchically positioned in relation to one another [8,10,16,17]. The medical labour market can be understood as a social field [8,10] or more specifically, the medical field (cf. [18]). The medical field includes many professions in addition to physicians, such as allied healthcare workers, nurses, auxiliary nurses, healthcare assistants and untrained caregivers [10]. Primary health care (PHC) and allied health professions are usually associated with lower status [10]. The specialties in which MPs choose to train vary internationally. In Norway, MPs are more likely to become specialists than domestically trained physicians; however, domestically trained physicians are more likely to become surgeons [14]. In contrast, in Finland, MPs are less likely to specialize than domestically trained physicians, but surgery is a common specialization [2]. MPs in Finland, however, often work in PHC [2]. In the UK, MPs are more likely to work in less popular specialties, such as geriatric and psychiatry [1,4]. Similarly, career advancement in underserved specialties might be easier for MPs in Ireland, where access to post-medical training for MPs is difficult [1]. Filling gaps in underserved areas is also an established way of shortening the recertification process in Canada [19]. This can also be seen in the high representation of MPs in PHC in the US and Finland [2,3,5]. Underserved areas refer to types of sector, medical specialties, and geographical locations [20,21]. Despite the societal benefits of filling such gaps, professional development and career advancement should be equally accessible to all physicians, not assigned based on the country in which a physician received their medical education. Having less freedom to pursue a desired medical specialty and location can adversely affect well-being [6]. Additionally, if the MP workforce is concentrated in particular medical specialties, the medical specialty workforce could become unbalanced. It could also be argued that the distribution of medical specialists should reflect the diversity in the society at large. In Sweden, 43% of medical specialists are women, and 57% are men [15]. In 2019, approximately 9800 physicians were in specialty training [15], almost a quarter (n = 2300) in general practice [15], making it the largest medical specialty. Physicians specializing in general practice and working as general practitioners (GPs) make up the largest employee group in PHC. In Sweden, staff shortages have been reported in PHC [8,22] and psychiatry [8,22]. There are possibilities that MPs with a medical degree from outside EU/EEA might work in medical specialties experiencing staff shortages in Sweden, such as general practice [23]. This study aims [1] to explore aspects that influence MPs' , with a medical degree from outside EU/EAA, choice of employment and medical specialty in Sweden and [2] to explore and understand a potential over-representation in general practice. This study will try to contribute with knowledge to help explain aspects that influence MPs' choice of employment, why MPs may be over-represented in general practice, and if this could be interpreted as an inequality in the medical specialty labour market based on where a physician obtained their medical degree. If so, policies in order to counteract negative consequences such as decreased well-being should be developed. --- Methods The study employed a mixed-method approach, conducted within a pragmatic and interpretative research tradition, and was part of a larger research project [24]. The current data have not been presented elsewhere. Ethical approval was received from the Regional Ethical Board in Stockholm, Sweden (2017/1717-31/5). --- Context: recertification of MPs and specialist training in Sweden In Sweden, MPs with a medical degree from outside the EU/EEA who wants to continue to practice need to: [26] which is 10% of the 11.570 Swedish medical licenses that were awarded in total [27], 41% were awarded to physicians educated in another EU country of which many are Swedish citizens, and 49% to physicians educated in Sweden [26]. In 2020, approximately 41.000 physicians practised their profession [27]. --- Participants A nonprobability convenience sample of volunteer MPs with medical degrees from outside the EU/EEA were recruited via a questionnaire that was disseminated to CPP enrolees from the programme launch in 2009 and to 2017 (N = 497) with a response rate of 57% (n = 283). Respondents who indicated having a specialty training position or respondents working as specialists or as senior doctors were included in the study sample (n = 101). --- Data collection Data were gathered through an electronically disseminated questionnaire (for more information, see [18]). The Swedish Board for Health and Welfare's categorization of medical specialties was used to cluster medical specialties in the questionnaire. Specialities identified in the literature as 'low prestige' (general practice, geriatrics and psychiatry) were extracted and separated from their overarching categories. The following questionnaire items were used for the current study: (1) whether respondents had begun or completed specialist studies before migrating to Sweden, and if so, in which specialty; (2) whether general practice was considered a specialty in their education countries; (3) whether they were undergoing or had completed medical specialty training in Sweden (if so, in which specialty) and whether their specialty was their first choice (if not, why); (4) how they perceived the status of different medical specialties in Sweden; and (5) what aspects influenced their choice of employment. The questionnaire included closed-ended questions employing 3-point and 5-point Likert response and open-ended questions with free text answers. To deepen our understanding of MPs' choice of general practice and how different aspects overlap on an individual level, data were also gathered via semi-structured interviews with MPs specializing or being specialists in general practice and working as GPs. Interviewees were recruited via an email sent to MPs who had enrolled in the CPP between 2012 and 2016 (n = 278). Seven MPs in specialty training responded, four of whom were pursuing general practice and were included in the study (two men and two women). The interview guide included questions about the MPs' choice of specialty and what influenced their choice, differences in the perceived prestige of specialties, and difficulties encountered in obtaining a specialty training position. The interviews lasted approximately one hour each and were audio-recorded and transcribed verbatim. --- Data analysis The Statistical Package for the Social Sciences (SPSS) version 25.00 (IBM Corporation, Armonk, NY) was used for descriptive and inferential statistical analysis of the questionnaires. The descriptive analysis involved calculating the means and standard deviations of the quantitative variables. For the categorical variables, frequencies and percentages were generated. The data distributions were assessed visually via boxplots, by contrasting potential discrepancies among the parameters of central tendency, by evaluating the skewness and kurtosis of the distributions and by employing Shapiro-Wilk tests. Parametric statistical tests were utilized: an independent sample T-test for examining differences between groups and a one-way between-groups ANOVA for examine differences between three or more groups. The Chi-square (χ 2 ) test and Cramer's V (phi) effect size was used to compare proportions between two or more independent groups and to investigate associations between two nominalscale variables. The Pearson correlation coefficient was calculated to test the association between the variables. P-values were adjusted for multiple comparisons via a Bonferroni correction of primary endpoints. P-values less than 0.05 were considered statistically significant for all statistical tests. The data from responses to open-ended questions and the interview transcripts were analysed using an inductive approach to thematic analysis [28,29]. The transcripts were first read by LS for familiarization. In another round of reading, paragraphs were highlighted on the printed transcripts, and keywords related to the manifest content were noted. In addition, thoughts and interpretations of the manifest content in relation to the researcher's prior understanding of the research field and the entire dataset were noted. A spreadsheet was used for data sorting: interviewees were sorted by row; paragraphs, keywords and latent content (researcher's interpretations) were sorted by column. Themes were identified by researchers and noted in another column. The findings were discussed and subject to adjustments until consensus among all researchers was reached. Despite the fact that the aforementioned steps seem consecutively ordered, the process of analysis and search for patterns was in no way linear; rather, it was iterative and recursive. --- Results In this section, the respondents' characteristics are presented. Aspects that influenced the respondents' choice of employment are then addressed. A comparison of MPs in general practice and MPs in other medical specialties is then presented. The results section concludes with the interview findings. Mean age was 41. Of the respondents, 46% were women, and 54% were men. More than one-half (55%) were either specialists or were completing their specialty training in general practice. Of the respondents who had begun or completed specialty training before migrating to Sweden, 21% were practising in their original specialty in Sweden. Of the 79% who had changed specialty, almost 60% were now practising general practice. Lastly, 24% of the respondents reported they were not practising in their first-choice medical specialty. None of the interviewees had completed or begun specialty training before migrating to Sweden. All participants were born in the 1980s and were educated in Asia, Eastern Europe or South America. They had all migrated to Sweden between 2010 and 2013. --- Aspects that influenced choice of employment and the specialty general practice Aspects that influenced MPs' choice of employment and to specialize in general practice related to (1) work, private life and the surroundings, and to (2) medical labour market conditions. We also identified differences between respondents in general practice and respondents in other specialties that related to the respondents' characteristics as presented in Table 1. --- Work, private life and the surroundings Explored aspects that influenced the respondents´ choice of employment are presented in Table 2. The most influential aspect was the ability to combine work with family. Second was the ability to develop one's competence. Third was the competence of colleagues. The least influential aspects related to religion or other beliefs and being close to or having colleagues from one´s country of origin or education. Gender differences related to private life and the surroundings were identified (Table 2). When comparing MPs in general practice (n = 55) with MPs in other specialties (n = 46), a significant statistical difference was found in only one aspect: 'ability to have the same patients for a long period' (see aspects presented in Table 2). This aspect influenced MPs in general practice significantly, compared to respondents in other specialties (M = 3.08 (SD = 0.93) vs. M = 2.18 (SD = 1.05), p = 0.000). A significant association was found between gender and medical specialty (general practice or other): p = 0.017, phi coefficient = 0.238 where women were more likely to specialize in general practice than men (Table 1). Female respondents regardless of specialty scored higher on some aspects related to private life (Table 1). A significant difference was found concerning respondents' perception of the status of general practice as a specialty: MPs who specialized or were training in general practice perceived the specialty to be of lower status than physicians in other specialties perceived general practice to be (M = 1.82 (SD = 0.7) vs. M = 2.15 (SD = 0.71); p = 0.028). No significant association was found between MPs in general practice and MPs in other medical specialties with regard to the variables of birth period, geographic region of origin or geographic region of medical education. However, the MPs with medical degrees from countries where general practice was not considered a specialty were more likely to specialize in general practice in Sweden than MPs with medical degrees from countries where general practice was considered a specialty: X 2 (1, n = 98) = 5.09, p = 0.024, phi coefficient = 0.228. No significant difference between MPs in general practice respondents and MPs in other medical specialties was found in relation to the item 'Was the specialty your first choice?' (Table 3). --- Conditions at the medical labour market The respondents who were not working or had specialty training in their first-choice specialty, were asked to indicate their perceived reasons for why not. The respondents had applied for, but not received their first-choice specialty. Perceived reasons were often outside the MPs' control, such as experiences of discrimination and medical labour market conditions. Ultimately, these reasons indirectly influenced MPs' choices by redirecting them towards other specialties. Some participants cited experiences of discrimination: 'I did not get it [specialty training position] even though I have a PhD, but the students who were educated in the country got it right after the medical internship. All university hospitals had the same behaviour. You get no answers despite having a PhD, post-doc, and medical Medical labour market conditions included intense market competition, which prevented respondents from getting their first-choice specialty position. Further, a lack of market contacts and references was noted as a limitation, as were a poor work environment. Perceived reasons for not working in a first-choice specialty differed between the MPs in general practice and MPs in other specialties to some extent. For MPs in general practice, the most common reasons for not working in a first-choice specialty were the length of time it would take to land a first-choice position and a lack of contacts, respectively. For MPs in other specialties, the most common reasons for not working in a first-choice specialty were the intensity of competition and a lack of contacts and references, respectively. --- Migrant physicians' choice to specialize in general practice: results from interviews In-depth information about how different aspects influenced MPs' choice to specialize in general practice was relayed through the interview stage of our study. The following themes were identified: job opportunities, positive experiences of PHC, working conditions, and family conditions. Job opportunities are plentiful in PHC, making it easier for MPs to be employed in this area. Interviewees had been offered the opportunity to participate in specialty training at the same PHC location where they had done their mandatory medical internship. The interviewees had positive experiences of PHC during temporary work conducted before or during their internship. They mentioned enjoying working at the PHC location where they had conducted their internship prior to obtaining their Swedish medical licence. This was because they had the same colleagues and had become a team. One interviewee contrasted PHC with a hospital in which no one knows anyone and one cannot make contact with others. Interviewees enjoyed the variety of work tasks, working with patients of different ages and diverse backgrounds, and the opportunity to establish a professional relationship with their patients: 'You can see a little bit of everything' . One interviewee highlighted their lack of knowledge about general practice before being exposed to it: 'I had no, not much idea about general practice before, it was more… talking, talking about cardiology, for example, neurology, and such super specialty, but not general practice as a specialty, there was no [such specialty] in [country], nor in [country]' . Working conditions, such as salaries, working hours, and not having to be on call, were also mentioned as influential aspects in MPs' choice to specialize in general practice. For instance, one interviewee had changed to general practice because dissatisfaction with the working conditions in another specialty. The working hours associated with general practice and working as a GP at a PHC location were also highlighted as convenient for physicians who were parents: 'You get home at five every day, and red-letter days you are home' . Some interviewees had considered other specialties, but when their family conditions changed, their priorities did as well: 'Then I became a mother, and all priorities changed. --- Considering that I have foreign background and therefore no relatives here, it is just my partner and me, and then I thought about on-call work, night work, weekend work and that was nothing I would [do]… I was not going to be the mother who was not with her children because my daughter is my first priority. ' Some interviewees initially pursued other specialties, but different circumstances changed their direction. One interviewee did not receive their first-choice specialty position, and when their second choice was not immediately available, waiting was not an option as the MP needed an income. Like the interviewee with children, this MP faced changing priorities, illustrating how influential aspects and their importance can change over time. Other aspects of working conditions related to language: 'If I was insecure about my language [skills], I would not have chosen general practice' , and to flexibility, as the general practice specialty and PHC workplace did allow participants to pursue their specific medical interests: 'I have told that this is my greatest interest, so I take --- Discussion This study aimed to explore aspects influencing MPs' choice of employment, and to explore and understand a potential over-representation in general practice. The results are discussed related to work, private life and the surroundings, and labour market conditions. Then follows a discussion that focus on over-representation in general medicine. --- Influential aspects: work, private life and the surroundings The results indicate that the respondents, regardless of specialty, valued and prioritized competence development, meaning they considered lifelong learning to be important. This is probably not specifically related to the respondents being MPs, but rather to the profession. Forty-six percent of the respondents were women, and 54% were men. This reflects the gender distribution patterns among specialists in Sweden (in 2014, 43% were women and 57% men) [15]. We found that women, regardless of specialty, scored significantly higher on some aspects that related to private life and the surroundings. We also found that women were more likely to specialize in general practice than men. The results are in line with previous research, indicating an imbalance related to gender and specialty choices [15] in which 'lifestyle factors and domestic responsibilities are much more important to women than to men' [30]. These factors and responsibilities have though been suggested to have an increasing meaning also for men [30]. Research also suggests that women's interest in certain specialties has decreased due to poor work climates [30]. Circumstances, such as working hours, can make it arduous to work in some specialties if, for example, one has few relatives nearby to help care for children. This might explain why, in the present study, the aspect 'ability to combine work with family' scored highest among all MPs, regardless of medical specialty or gender. A majority of the respondents indicated that partner and children living at home were aspects with partial to total influence when choosing employment. These aspects might have been valued differently if, for example, the respondents had not yet started a family. The respondents mean age was 41. Scientific literature has reported that MPs hold less prestigious positions [2]. In our study, the 'possibility of leadership' was not a major influential aspect for the respondents when choosing employment. This suggests that respondents' motivation to fill leadership positions is low. This may be due to competing interests, but may also relate to labour market conditions that might cause resignation [31], and decreased motivation. Attitudes might be aligned towards actual career opportunities to decrease any demotivation and frustration, thus attitudes may change over time. --- Influential aspects: medical labour market conditions Some of the study participants mentioned experiences related to discrimination as a reason for not receiving a specialty training position in their first-choice specialty. Discrimination is a barrier to entering the labour market in general for most migrants [26][27][28], and this is often true for MPs [18,32,33]. Additionally, a devaluation of MPs competence might occur during a job seeking process [18]. Intense competition could negatively impact MPs' careers. Research has suggested that domestically trained physicians are occasionally recruited to specialty training positions informally, via a recruitment process that begins during their medical programme [1,8]. This can be a difficulty for domestically trained physicians, but this aspect is probably more difficult for MPs as they receive their basic medical training abroad, and therefore do not have the same opportunities in this informal recruitment process (cf. [1]). This is reflected in our results, as a lack of contacts was cited as a reason for not working in one's first-choice specialty. Empirical studies have suggested that informal networks affect one's career advancement opportunities in Sweden, and that this is of disadvantage for migrants [18,31,34]. Returning to Bourdieu´s concept of symbolic capital [16,17], our results indicate that social capital (networks) might be an advantage when competing for certain specialty training positions. This might indirectly impact choices of employment and specialty and how the physician is subsequently positioned in the medical field. The lack of sufficient social capital among MPs can be explained by them not having developed their cultural capital in the Swedish medical field, as they had their basic medical education elsewhere. --- Over-representation in general practice In Sweden, physicians in general practice constitute about a quarter of all specialists in training or working (cf. [15]). More than half (55%) of the respondents with a medical degree from outside EU/EEA were active general practitioners. We also found that some respondents had changed their specialty to general practice after migrating to Sweden. The respondents hence have a tendency to work in a specialty with staff shortages in Sweden, thus filling a gap in a low-prestige specialty which MPs usually also do in other countries [1,2,5,19,20,35]. In our study, respondents in general practice indicated that it would take too much time for them to obtain a position in their first-choice specialty. Previous research has suggested that MPs adjust their career plans to pursue general practice, psychiatry and geriatrics for the sake of job availability [2,35], rather than preferred career choice [2]. In Sweden, employers have difficulties to recruit physicians to general practice [15]. Applying for a medical specialty training position in a specialty suffering from staff shortages likely accelerates career advancement. This may be desirable as MPs with medical degrees from outside the EU/EEA in Sweden must undergo a time-consuming recertification process before they can proceed to specialist training, regardless of any specialty training they received before migrating to Sweden. In general, MPs are also older than domestically trained physicians at the same stage in their career [14,25,36]. Age in combination with labour market conditions which may include an informal recruitment process that begins in medical school, and feelings of discrimination, may help explain the tendency of MPs to work in specialties with staff shortages (cf. [1,2,5,19]). Labour market conditions might limit freedom to choose and decrease motivation to pursue a certain specialty. This can lead to stress, dissatisfaction and decreased well-being [6,7], and if change of specialty, a waste of competence. The extent of free choice can be discussed by drawing parallels to motivation (cf. [6]). Accordingly, conditions on the labour market, as well as circumstances in life, that might limit an individual's freedom of action may be internalized and consequently accepted, turned to intrinsic motivation, culminating in the perception that one's choices are free (cf. [6]). Our interpretation of the findings is that the respondents in our study did not perceive their choice to practice general practice as more involuntary than respondents in other specialities. Our findings demonstrated no differences between respondents in general practice and respondents in other medical specialties regarding whether they were practising in their first-choice specialty. We also found that respondents in general practice scored significantly higher on 'ability to have the same patients for a longer period' . Previous research has shown that an essential part of working as a GP is to develop a continuous relationship with patients [37]. Not surprisingly, this aspect also influences domestically trained physicians' specialty choice [7]. Our analysis of the interviews revealed that previous positive experiences at PHC locations and changes in family conditions were shown to influence the interviewees' choice of specialty and their attitudes towards their specialty. Their choice to practise general practice was described as closely connected to their positive experiences of working in PHC and the accompanying working conditions. Aspects that influence MPs' choice of employment and specialty, and the importance of these aspects, might thus change as time passes and life circumstances change, probably regardless of specialty. Our results show that life situation affects individuals' consideration of working conditions. As described, MPs are in general older than domestically trained physicians, and if having families, one might choose to pursue with specialties considered as lifestyle-friendly (cf. [10]), such as general practice. Other specialties that have been described as more lifestyle-friendly include public health medicine and dermatology [10]. This might also correlate with gender if, for example, women are more responsible for dropping off and picking up children from daycare. As mentioned in the beginning of the discussion, women respondents more often specialized in general practice than men, and previous research shows an imbalance regarding gender and specialty choices, which can relate to domestic responsibilities and lifestyle factors [15]. Based on these results, we suggest that labour market conditions on societal and organizational levels and circumstances of being a MP, and influential aspects on an individual level that relate to work, private life and the surroundings, and motivation are intertwined and might lead to over-representation in general practice and PHC. We found that MPs in general practice valued their specialty less than medical specialists in other specialities valued general practice. Our analysis showed that the MPs in general practice were not in the specialty for its status. These results are congruent with research that has shown that domestically trained physicians in general practice also rank the specialty as having low status [38]; that they are aware of their specialty's low status but still are satisfied with their choice [8]. Not all physicians strive for high-prestige specialties, like surgery [8]. As previous international research has suggested that specialties are ranked, with general practice considered low, we suggest that some ideas within the medical field, such as the hierarchy of medical specialties, might be transnational and thus not bound by national borders (cf. [14]). Research suggests that those who work in the PHC sector have lower prestige in the medical field [10], and that specialties with a majority of women usually have low status [13]. The present study found that more than half of the respondents had specialized in general practice, the majority in PHC. In addition, women respondents were more likely to specialize in general practice than respondent men. A negative consequence of labour gaps being filled by a certain group is an imbalanced professional community. This can create divisions in the medical field based on country of medical education, or country of origin, or gender. An imbalance might produce, maintain or reproduce differences in the statuses of specialties, thereby reinforcing other types of negative differences, such as devaluation of competence based on country of origin or education, but also based on gender. --- Strengths and limitations A limitation of the study is that only a few physicians specializing in general practice volunteered to be interviewed which may influence the qualitative results. A small sample of interviewees limited a selection based on variation regarding age, country for medical education and country of origin, and whether general practice was a specialty or not in the country of medical education. Therefore, the interesting finding revealing that respondents with medical degrees from countries where general practice was not a specialty were more likely to specialize in general practice in Sweden, was not explored in-depth. The mixed-methods design of the study was however a strength, as the interview data provide more in-depth illustration of the questionnaire data. In addition, the breadth of the questionnaire data compensated for the small sample. We also had a well-defined population for the questionnaire as all of the CPP participants in Sweden between the admission years 2009-2017 were eligible (N = 497). The questionnaire respondents (n = 283), were in comparison to the population in question, representative regarding gender, age, CPP admission year, university for the CPP, and frequency of obtained Swedish medical licence. The population mean age was 40, the questionnaire respondents 39 (n = 283), and respondents in specialist training or being specialists 41 (n = 101). The respondents in the current study were slightly overrepresented in the earlier admission years which probably reflects the process and development of becoming a medical specialist in Sweden. Therefore, we consider our sample to be representative. Another strength of the study was that the questionnaire was digitally disseminated which enabled a dynamic approach where followup questions were asked only when relevant, to reduce any survey fatigue. --- Implications for research and healthcare We recommend future studies exploring aspects that influence employment and specialty choices of domestically trained and EU-trained physicians, in order to do comparison with our study participants. Such studies would provide increased information about if and how the same medical specialty labour market may (re) produce different conditions depending on where a physician acquired their medical degree. Knowledge of similarities, on the individual level, across the different groups could be used for employers to attract physicians of diverse backgrounds to medical specialties or geographical regions where there are staff shortages, and to address inequality. Results could then be used to address needs to create sustainability in work life. Further research could be undertaken to identify advantages and disadvantages regarding the tendency for MPs to fill staff shortages in, for example, general practice, as well as the related implications for MPs, patients, and society at large. Future studies could explore how skills and knowledge of MPs specialized in general practice with a specialist training from another country can be utilized. These studies might investigate how the specialty can be enriched by MPs' additional expertise and knowledge, as such enrichment may relieve other specialist areas, even if only to a small degree. --- Conclusion Regardless of specialty, study participants valued being able to combine work with family and having opportunities to develop competences high when choosing employment. Women scored higher on some aspects related to private life and the surroundings. MPs are generally older than their domestically trained peers and have to participate in a time-consuming recertification process. Specializing in a specialty suffering from staff shortages such as general practice may reduce time to become a specialist. The present study showed an over-representation of respondents in general practice. We found that women respondents were more likely to specialize in general practice than men. When MPs encounter difficulties reaching certain specialties, they may instead choose to fill staff shortages in others. However, we did not find any indications that respondents' choice to specialize in general practice was any less voluntary than that of respondents in other specialities. MP general practitioner interviewees had positive experiences of working at PHC, and had their priorities changed which had influenced their choices. Influential aspects might evolve with life circumstances over time. The choice to specialize in general practice amongst MPs is complex, and involves different aspects that could be related to societal, organizational and individual levels, and these aspects interact. However, filling staff shortages creates a risk that the MPs' competences will be underutilized, and that the medical field becomes segmented, which have implications for both healthcare and future research. the support of TS, MÖ, PP and GN. All authors read and approved the final manuscript. --- Availability of data and materials The dataset generated and analysed in the course of the current study is not publicly available due to ethical restrictions. The data are protected by confidentiality rules pursuant to the Swedish Public and Privacy Act, which means that no unauthorized person can access the data. This is to protect the participants' confidentiality and privacy. Any questions regarding the data can be emailed to [email protected]. --- Authors' contributions LS designed the study with the support of TS. LS developed the questionnaire with the support of TS, GN, MÖ and PP. LS collected the data, except for some interviews that were conducted by Andreas Heiding. LS performed the analysis with the support of TS, MÖ, PP and GN. LS wrote the paper with --- Declarations Ethics approval and consent to participate Ethical approval was obtained from the Regional Ethical Board in Stockholm, Sweden (2017/1717-31/5). Study participants gave consent before participation. --- Consent for publication Not applicable. --- Competing interests The study was part of a larger research project. Focus was placed on specialty choices. The resulting data have not been presented elsewhere. The authors have no competing interests. • fast, convenient online submission • thorough peer review by experienced researchers in your field --- • rapid publication on acceptance • support for research data, including large and complex data types • gold Open Access which fosters wider collaboration and increased citations maximum visibility for your research: over 100M website views per year --- • At BMC, research is always in progress. --- Learn more biomedcentral.com/submissions Ready to submit your research Ready to submit your research ? Choose BMC and benefit from: ? Choose BMC and benefit from: --- Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

82a5c613445d512a2c6364dfa6a2fd6997fbbea0

Preventing Unintended Pregnancy Among Young Sexually Active Women: Recognizing the Role of Violence, Self-Esteem, and Depressive Symptoms on Use of Contraception.

Objectives: Ineffective contraceptive use among young sexually active women is extremely prevalent and poses a significant risk for unintended pregnancy (UP). Ineffective contraception involves the use of the withdrawal method or the inconsistent use of other types of contraception (i.e., condoms and birth control pills). This investigation examined violence exposure and psychological factors related to ineffective contraceptive use among young sexually active women. Materials and Methods: Young, nonpregnant sexually active women (n = 315) were recruited from an urban family planning clinic in 2013 to participate in a longitudinal study. Tablet-based surveys measured childhood violence, community-level violence, intimate partner violence, depressive symptoms, and self-esteem. Followup surveys measured type and consistency of contraception used 9 months later. Multivariate logistic regression models assessed violence and psychological risk factors as main effects and moderators related to ineffective compared with effective use of contraception.The multivariate logistic regression model showed that childhood sexual violence and low self-esteem were significantly related to ineffective use of contraception (adjusted odds ratio [aOR] = 2.69, confidence interval [95% CI]: 1.18-6.17, and aOR = 0.51, 95% CI: 0.28-0.93; respectively), although self-esteem did not moderate the relationship between childhood sexual violence and ineffective use of contraception (aOR = 0.38, 95% CI: 0.08-1.84). Depressive symptoms were not related to ineffective use of contraception in the multivariate model. Conclusions: Interventions to reduce UP should recognize the long-term effects of childhood sexual violence and address the role of low self-esteem on the ability of young sexually active women to effectively and consistently use contraception to prevent UP.

Introduction N ationally, more than one-half of all pregnancies are reported as unintended, defined as an unwanted or mistimed pregnancy at the time of conception. 1 Ineffective use of contraception, such as inconsistent condom or birth control pill use or use of the withdrawal method, is prevalent and constitutes a major risk factor for unintended pregnancies (UPs) among sexually active young women. 2 Promoting effective use of contraception is a highly economical approach to preventing UPs. For every $1.00 invested in preventing an UP, $5.68 in Medicaid expenditures would be avoided. 3 Current initiatives to reduce UP have focused on increasing access to and use of long-acting reversible contraception (LARC), such as intrauterine devices and implants, 1 but the proportion of sexually active women reporting use of condoms (14%), birth control pills (23%), or nonuse of contraception (10%) still remains high. 2,[4][5][6] In 2012, over 40% of sexually active young women reporting an UP reported inconsistent use of birth control or condoms, thus initiatives to promote effective use of contraception are needed. 3 Particular groups of women have been found to be at high risk for UP, including women who report childhood violence, live in urban areas, are in a racial/ethnic minority group, have limited education, live in poverty, and are at the youngest or oldest spectrum of reproductive years. [7][8][9][10][11][12] Exposure to violence is very prevalent among urban sexually active women. Nationally, over 6% of women reported interpersonal violence in the past year and over 4% of women reported at least one episode of childhood sexual violence and these proportions are even higher among young urban women. [13][14][15][16] In addition, violence exposure has been shown to influence reproductive health with the report of ineffective use of contraception at last sexual intercourse the highest among women reporting physical violence or history of sexual victimization. 17 Stress, depressive symptoms, and self-esteem have also been linked to use of contraception. High levels of depressive symptoms have been related to inconsistent use of contraception in cross-sectional and longitudinal cohorts. 18,19 Hall et al. found that the odds of weekly consistent contraceptive use were reduced by 47% among women reporting high depressive symptoms (odds ratio [OR] = 0.53, confidence interval [95% CI]: 0.31-0.91) and long-term consistent contraceptive use was 10%-15% lower among women reporting high levels of depressive symptoms and stress compared with women with relatively low levels of depressive symptoms and stress. 20 Recently, high levels of self-esteem have been related to reports of more consistent use of contraception among college-age women. 4 A limitation of prior research examining predictors of UP is the scant number of longitudinal studies to clarify the causal direction between violence exposure, psychological factors, and use of contraception. To our knowledge, no studies have examined the independent and interactive effects of violence exposure and psychological factors on use of contraception among high-risk women. In the current investigation, we conducted a longitudinal study among young, urban primarily minority women to test theory-driven models of the direct independent effects of both violence exposure and psychological factors on ineffective use of contraception. Based on vulnerability-stress models 21 and resilience models, 22,23 we also predicted that psychological factors would moderate the positive relationship between violence exposure and ineffective contraceptive use. Specifically, we hypothesized that (1) depressive symptoms would be a vulnerability factor and increased the odds that women with high violence exposure report ineffective contraceptive use and (2) self-esteem would be a resilience factor and decreased the odds that women with high violence exposure would report ineffective contraceptive use. By investigating violence exposure and psychological effects in the same assessment of factors related to ineffective contraceptive use, these results may inform interventions designed to promote self-esteem and decrease depressive symptoms to improve effective contraceptive use and reduce UP in this high-risk population of young women. --- Materials and Methods --- Enrollment and study eligibility The Young Women's Health Study (YWHS) recruited 315 young urban women who sought care in a high-volume, urban family planning clinic from January 2013 through November 2013 and followed each woman for 9 months. Eligible women resided in North Philadelphia, were aged 18-30 years, reported sexual activity with a man in the past 3 months, and were not currently pregnant, attending a postpartum visit, or planning to get pregnant. This project recruited women from a clinic serving North Philadelphia, a low-resource neighborhood with particularly high rates of poverty, teen pregnancy, and violence. The Temple University IRB approved the study protocol. Recruitment, consent, and baseline data collection occurred in clinic waiting rooms. Research coordinators approached each woman in the waiting room, described the purpose of the study, and screened women for study eligibility. An audio computer-assisted survey instrument (ACASI) was used to administer the baseline questionnaire. Follow-up CASI telephone interviews were conducted 9 months after baseline to assess the contraception method and consistency of use. Women were compensated ($45) for their time participating in this study, with $30 provided at baseline and $15 after completion of the follow-up interview. --- Measures Descriptive variables and covariates. At baseline, race/ ethnicity, educational status, relationship status, homelessness, sexual health history, gravidity, and substance and alcohol use were measured. Problem drinking was measured with the 5-item TWEAK (Tolerance, Worried, Eye-Opener, Amnesia, K/Cut) scale. 24 A total TWEAK score of 3 or more indicated problem drinking (yes/no). Violence. The following measures of violence exposure were collected at baseline and examined as independent variables of interest. Childhood physical and sexual violence: Women were prompted to think about their entire childhood and remember all episodes of violence before 16 years of age. Exposure to physical violence was measured with the item: ''How often, before you were 16, were you slapped, pushed, hit, punched, or beaten up by someone you know or by a stranger?'' Exposure to sexual violence was measured with the item: ''Before you were 16 years old, how often did anyone ever force you to have sex?'' Response options for both questions were never, once or twice, sometimes, often, or very often. The childhood violence measures were dichotomously classified as exposure to childhood physical violence (y/n) or exposure to childhood sexual violence (y/n). These questions have been used in previous research. 13,25 Adult physical and sexual violence: To assess violence since 16 years of age, women were asked about their experience with physical violence since 16 years of age (y/n), their experience with sexual violence since 16 years of age (y/n), and their experience with physical violence by an intimate partner in the past year (y/n) using standardized questions. 13 Community violence: Current community-level violence was measured at baseline using the City Stress Inventory (CSI), a validated 18-item scale to assess perceived neighborhood disorder and exposure to community-level violence. 26 Higher scores of CSI indicated a high perception of neighborhood violence. We also collected information on the degree of reproductive coercion reported from a sexual partner in the past year using a modified version of items that determine the amount of birth control sabotage and pregnancy coercion, as described by Miller et al. 27 Moderators. Two psychological factors were assessed to determine the role of psychological vulnerability and resilience factors on ineffective use of contraception. The 10item Center for Epidemiologic Studies depression (CES-D) scale was used to measure depressive symptoms at baseline. This scale has been shown to be reliable among urban populations. 28,29 Higher scores indicated a higher level of depressive symptoms. Scores of 10 or higher indicated high levels of depressive symptoms and scores below 10 indicated normal levels of depressive symptoms (y/n). 29 The validated 10-item Rosenberg self-esteem scale was used at baseline to measure self-esteem and higher scores indicated higher levels of global self-worth. 23,30 Scores ranged from 0 to 30, with scores below 15 indicating low self-esteem and scores over 25 indicating high self-esteem. Contraception. At the 9-month follow-up survey, women reported all methods of birth control used during the follow-up period and the consistency of use. A composite measure reflecting both the type and consistency of contraception was the outcome of interest in this assessment. First, the contraception method collected at follow-up included the self-reported use of birth control pills, the withdrawal method, condoms, Depo-Provera, intrauterine device (IUD), patch, vaginal ring, Implanon, morning-after pill, some other method, or did not use anything to prevent pregnancy. As described by others and used in the National Survey of Family Growth, the type of contraception method was then top coded and classified by the most reliable contraception method. 3,31 For example, women reporting using both birth control pills and condoms were classified as pill users since the pill has a lower failure rate than condoms. Second, the consistency of contraceptive use was defined as reporting the use of that method every time during sex in the past 9 months or the adherence to the patch, ring, or Depo-Provera. To be classified as an effective contraception user at follow-up, women had to report (1) using LARCS (IUDs or Implanon), (2) adherent use of Depo-Provera, patch, or vaginal ring during the follow-up period, or (3) consistent use of birth control pills or condoms for each sexual act during the follow-up period. Two women reported consistent and exclusive use of the morning-after pill and they were included in the effective user group. Women were classified as ineffective contraception users at follow-up if they reported (1) using the withdrawal method, (2) not using any form of contraception in the follow-up period, or (3) reported using birth control pills or condoms, but not consistently during follow-up. Thus, in this assessment, we are most interested in understanding the factors involved with consistent use of effective contraception methods to inform new strategies to prevent UP. --- Statistical methods Descriptive statistics and a series of logistic regression models were used to assess main and moderating effects. De-scriptive statistics were generated for the total sample and contraceptive user group (i.e., effective vs. ineffective contraception user). Analyses of variance (ANOVAs) or nonparametric Kruskal-Wallis tests were used to compare the contraceptive user groups on continuous variables. Fisher's exact tests or chi-square tests were used to assess the association between the contraceptive user group and categorical variables. For this assessment, the independent variables used to measure exposure to violence were childhood sexual violence, intimate partner violence, and level of community violence. Other independent variables included problem drinking and gravidity. The moderating variables were depressive symptoms and self-esteem. The outcome of interest was ineffective use of contraception over the 9-month period compared with effective use of contraception over the 9-month period. Multivariate binary logistic regression models were developed to assess the main effects and moderating effects of childhood sexual violence and ineffective use of contraception by the psychological factors (depressive symptoms or self-esteem). A p-value £0.2 in the bivariate examination was used as a cutoff to include variables to assess in the multivariate models. Given this conservative cutoff, we included variables marginally related to the outcome on the bivariate examination to assess for confounding effects in the multivariate model. Given the collinearity between depressive symptoms and self-esteem (R = -0.41, p < 0.001), separate multivariate models were initially created for each moderator. The first multivariate logistic regression model included childhood sexual violence, level of self-esteem, and an interaction term (childhood sexual violence and low selfesteem compared with no childhood sexual violence and normal self-esteem). The second multivariate logistic regression model included childhood sexual violence, depressive symptoms, and an interaction term (childhood sexual violence and high depressive symptoms compared with no childhood sexual violence and normal depressive symptoms). To examine the collective effect of depressive symptoms, self-esteem, and childhood sexual violence, a final multivariate logistic model was developed. Two-tailed p-values of 0.05 were considered statistically significant in all models. All analyses were performed using SPSS 22 (IBM Corp, Armonk, NY). --- Results Of 621 women screened for study, 390 were eligible and 81% of the eligible women consented to participate. We were successfully able to recontact and reinterview 88% of enrolled women 9 months after the baseline interview (N = 276), with a 5% lost to follow-up and a 7% refusal rate. At follow-up, we found that 7 women reported trying to conceive and 11 women were not sexually active during the follow-up period; these 18 women were excluded from the analyses. Thus, the final analysis included 258 eligible women with complete baseline and follow-up data. The majority of participants were young African American women with a mean age of 22 -3.3 years (Table 1). Sixteen percent of women were Latina, 22% of women did not finish high school, and 21% of women reported ever being homeless. Over one-half reported being single and in a relationship and 11% reported >20 lifetime sexual partners. Substance use was high in this population with 15% reporting problem Violence exposure and poor psychological health were also high in this group of young women. Overall, 16% reported at least one episode of childhood sexual violence, 47% reported at least one episode of childhood physical violence, 45% reported a history of physical violence, and 34% reported violence by an intimate partner in the past year. The mean level of perceived community violence was 37.96 -11.5. Over 40% of women reported high depressive symptoms at baseline, 59% reported low self-esteem at baseline, and the mean level of self-esteem was 23.34 -5.6 (Table 1). Sixty-four percent of women reported effective use of contraception through the follow-up period, and 36% reported ineffective use of contraception. For this assessment, we were most interested in determining the role of violence and psychological factors related to ineffective use of contraception. As shown in Table 1, the experience of childhood sexual violence was significantly related to effective use of contraception. Among young women reporting childhood sexual violence, 48% reported effective use of contraception and 52% reported ineffective use of contraception ( p = 0.05). We also found that problem drinking related to ineffective use of contraception; 42% of women reporting problem drinking reported ineffective use of contraception and 58% reported effective contraceptive use ( p = 0.01). In addition, we found a higher mean number of pregnancies among women reporting ineffective contraceptive use (1.96 -2.13 and 1.72 -1.48; p = 0.01) (Table 1).The mean level of depressive symptoms was higher among young women reporting ineffective use of contraception compared with effective use of contraception (10.1 -5.8 vs. 8.7 -5.6, respectively, p = 0.09). The mean level of self-esteem was also significantly lower among women reporting ineffective use of contraception compared with women reporting effective use of contraception (22.0 -5.3 and 23.9 -5.6, respectively, p = 0.01) (Table 1). From the bivariate models, the experience of childhood sexual violence and the report of high depressive symptoms increased the likelihood of ineffective use of contraception, while the report of high self-esteem decreased the likelihood of ineffective use of contraception (Table 2). Specifically, women reporting childhood sexual violence at baseline (OR = 2.25, 95% CI: 1.15-4.39)and high depressive symp-toms at baseline (y/n) (OR = 1.71, 95% CI: 1.02-2.87) were significantly more likely to report ineffective use of contraception and women reporting higher baseline levels of selfesteem were significantly less likely to report ineffective use of contraception (OR = 0.42, 95% CI: 0.25-0.73). Including problem drinking and gravidity did not change the significant findings in these models. In the multivariate models, the experience of childhood sexual violence and low self-esteem continued to be related to ineffective use of contraception (adjusted odds ratio [aOR] = 2.69, 95% CI: 1.18-6.17, and aOR = 0.51, 95% CI: 0.28-0.93; respectively) (Table 3). The interaction term assessing the moderating effect of low self-esteem on the relationship between childhood sexual violence and ineffective contraception did not support moderation (Table 3). The multivariate logistic regression model, including high depressive symptoms and experiences with childhood sexual violence, showed that childhood sexual violence was significantly related to ineffective use of contraception, but high depressive symptoms were no longer related (aOR = 3.32, 95% CI: 1.31-8.40, and aOR = 1.27, 95% CI: 0.71-2.28; respectively). The interaction terms assessing the moderating effect of depressive symptoms on the relationship between childhood sexual violence and ineffective contraception did not support moderation by these psychological factors (Table 3). A final multivariate logistic regression model, including childhood sexual violence, high depressive symptoms, and low self-esteem, found that the experience of childhood sexual violence and low self-esteem were significantly related to ineffective use of contraception (aOR = 1.99, 95% CI: 1.00-3.97, and aOR = 0.47, 95% CI: 0.26-0.86; respectively), but high depressive symptoms were not (aOR = 1.18, 95% CI: 0.66-2.09). --- Discussion This longitudinal assessment of young, sexually active, primarily African American women aimed to examine the direct effect of violence exposure, depressive symptoms, and self-esteem on ineffective use of contraception, as well as evaluate the moderating influence of depressive symptoms and self-esteem on the relationship between violence and use of contraception. The results from this study identified both modifiable (low self-esteem) and nonmodifiable (exposure to childhood sexual violence) factors related to ineffective use of contraception, but did not find that depressive symptoms or self-esteem modified the relationship between childhood violence and use of contraception. Others have also examined the main and moderating effects of self-esteem. Morrison et al. recently reported a positive relationship between selfesteem and consistent contraceptive use, but they did not examine the role of violence exposure. 4 UP has been linked to delayed prenatal care, increased substance use and depression during pregnancy, high rates of infant mortality and preterm birth, reduced breastfeeding, and increased child and maternal violence. [32][33][34][35] Reducing the high rate of UP could have long-term individual and community effects by reduc-ing poverty, improving education and socioeconomic status for women, expanding the national workforce, and reducing rates of sexually transmitted diseases, HIV, and teen pregnancy. [36][37][38][39] These findings identified several factors to recognize when designing interventions to improve consistent contraceptive use and reduce the risk of UP among young sexually active women. A high proportion of women enrolled in this urban clinicbased study reported childhood sexual violence, nearly double the proportion reported from national surveys. 14 Prior crosssectional studies have shown a link between childhood sexual violence and later adverse health outcomes such as high-risk sexual behaviors, inconsistent contraceptive use, and UP, and our longitudinal results support a direct relationship between the experience of childhood sexual violence and ineffective contraceptive use. [40][41][42][43][44][45][46][47][48] Others have reported a role of other types of violence, such as intimate partner violence, reproductive coercion or a high level of community violence, and inconsistent use of contraception. 49,50 We found high levels of violence exposure in this sample, but did not find the experience of reproductive coercion or the report of community violence to be related to ineffective use of contraception in this study. 27,51,52 It is important to note that in this project, we used a modified version of the reproductive coercion scale developed by Miller and Silverman and did not include all the questions on pregnancy coercion. 11 These findings suggest that an experience of sexual abuse in childhood may influence long-term reproductive health behaviors and screening for a history of childhood sexual violence may be particularly important when discussing pregnancy prevention. Developing trauma-informed approaches to promote consistent and effective contraceptive use among women who have experienced childhood sexual violence could be an effective initiative to reduce UP. It should also be noted that over 15% of our sample were Latina, a group of women at particularly high risk for violence, and future studies should specifically examine the role of violence exposure and use of contraception with ethnically appropriate messages for Latina women. 53 We found that women with low self-esteem had an independent and significant increased risk for ineffective use of contraception. Limited research has examined the role of self-esteem on use of contraception while recognizing childhood violence exposure. A recent report linked high levels of condom communication assertiveness among sexually active couples and consistent condom use, but violence exposure was not assessed in this study. 54 Most research has examined the role of depressive symptoms on contraceptive use and found that high depressive symptoms among sexually active women influence contraceptive nonuse 18,19,[55][56][57] and that adolescents with higher depressive symptoms were most likely to report not using contraception, report inconsistent or incorrect use of contraception, and report early discontinuation of contraception. [18][19][20]58 We initially found a role of high depressive symptoms linked to ineffective use of contraception; however, this positive finding did not remain significant in the multivariate model after recognizing the experience of childhood sexual violence. In fact, the report of depressive symptoms in adulthood has been linked to childhood and current violence. 55 The results from this study indicate that family planning interventions that increase selfesteem among young sexually active women may improve use of contraception. Improving self-esteem may impact a young women's ability to say no to sexual advances, her assertiveness in requiring contraceptive use during sex, and her ability to discuss use of contraception with sexual partners or a healthcare professional. In fact, we found that women reporting low self-esteem in this study were less likely to report that they were certain about their ability to refuse a sexual advance by their partner, their ability to have a sexual encounter without feeling obligated to have intercourse, and their ability to promote the use of condoms with a sexual partner. In addition, these findings highlight the need to examine and better understand the interrelationship between a woman's mental health status, her prior and current exposure to violence, and the likelihood of consistent and effective use of contraception with a sexual partner. There are several study limitations that should be noted. First, the sample of women was specific to young, urban, primarily African American women reducing the generalizability of these findings. Second, although we have longitudinal data, the observed associations are subject to alternative explanations due to unmeasured variables causing a spurious association. Third, the psychological factors and contraceptive use were self-reported, a common method used in other research with community-based cohorts. 18 Fourth, methodological issues in the wording of the follow-up questions concerning consistent use (y/n) may have introduced misclassification in the assessment of consistent use of Depo-Provera. Given the limited information on the adherence of required visits for consistent Depo-Provera use, women reporting this method of contraception may have been incorrectly classified as effective contraceptive users if they reported consistent use without an additional probe regarding adherence to required provider visits for Depo-Provera injections. Fifth, we did not collect information on feelings of ambivalence surrounding UP or the role of an UP among close family members, and research has found that ambivalence and UP among family members may contribute to contraceptive choice and use among young sexually active women. 59,60,61 Finally, we did not collect information on household income or information on the experience of violence during the follow-up period. In this study, we found a strong, significant, and positive relationship between exposure to childhood sexual violence and ineffective use of contraception. In addition, low selfesteem at baseline was significantly related to ineffective use of contraception during the follow-up period. These findings suggest the importance of screening for childhood sexual violence when discussing pregnancy prevention and promoting interventions to increase self-esteem to improve consistent use of effective contraception methods to reduce UPs among young sexually active women. --- Conclusion Screening for childhood sexual violence, developing trauma-informed approaches, and designing interventions to increase self-esteem could contribute to the improvement in contraceptive use among urban minority women. --- Author Disclosure Statement No competing financial interests exist.

29b8b901d709cd4b1991ea2ba426c7f4788602d9

Contraception and Healthcare Utilization by Reproductive-Age Women Who Use Drugs in Rural Communities: a Cross-Sectional Survey

BACKGROUND: Women who use drugs (WWUD) have low rates of contraceptive use and high rates of unintended pregnancy. Drug use is common among women in rural U.S. communities, with limited data on how they utilize reproductive, substance use disorder (SUD), and healthcare services. OBJECTIVE: We determined contraceptive use prevalence among WWUD in rural communities then compared estimates to women from similar rural areas. We investigated characteristics of those using contraceptives, and associations between contraceptive use and SUD treatment, healthcare utilization, and substance use. DESIGN: Rural Opioids Initiative (ROI)crosssectional survey using respondent-driven sampling (RDS) involving eight rural U.S. regions (January 2018-March 2020); National Survey on Family Growth (NSFG)nationally-representative U.S. household reproductive health survey (2017-2019). PARTICIPANTS: Women aged 18-49 with prior 30-day non-prescribed opioid and/or non-opioid injection drug use; fecundity determined by self-reported survey responses. MAIN MEASURES: Unweighted and RDS-weighted prevalence estimates of medical/procedural contraceptive use; chi-squared tests and multi-level linear regressions to test associations.

KEY RESULTS: Of 855 women in the ROI, 36.8% (95% CI 33.7-40.1, unweighted) and 38.6% (95% CI 30.7-47.2, weighted) reported contraceptive use, compared to 66% of rural women in the NSFG sample. Among the ROI women, 27% had received prior 30-day SUD treatment via outpatient counseling or inpatient program and these women had increased odds of contraceptive use (aOR 1.50 [95% CI 1.08-2.06]). There was a positive association between contraception use and recent medications for opioid use disorder (aOR 1.34 [95% CI 0.95-1.88]) and prior 6-month primary care utilization (aOR 1.32 [95% CI 0.96-1.82]) that did not meet the threshold for statistical significance. CONCLUSION: WWUD in rural areas reported low contraceptive use; those who recently received SUD treatment had greater odds of contraceptive use. Improvements are needed in expanding reproductive and preventive health within SUD treatment and primary care services in rural communities. --- INTRODUCTION In the United States (U.S.), women are using drugs at increasing rates, 1 with consequent rises in overdose deaths, substance-exposed pregnancies, and other related consequences over the past two decades. 1,2 The national prevalence of maternal opioid-related diagnoses at time of hospital delivery 3,4 and neonatal opioid withdrawal syndrome (NOWS) have increased considerably, 4 with trends indicating higher rates of maternal opioid-related diagnoses and NOWS in rural compared to urban U.S. areas. 5 Reproductive-age women who use drugs (WWUD) experience unintended pregnancies at up to double the rate than the general population. 6 A contributing factor is substantially lower rates of highly effective contraceptive utilization among WWUD as compared to women who do not use drugs. 7 Nationwide household surveys including the National Survey on Family Growth (NSFG), which include no questions about substance use, likely fail to capture the reproductive health needs of WWUD, particularly those in rural communities. 8 Despite increasing awareness surrounding unintended pregnancies and associated maternal and neonatal morbidity and mortality among WWUD, little is known about disparities in utilization of reproductive health services of WWUD in rural communities. Individual, community, and environmental factors contribute to 60-90% of pregnancies being unintended among WWUD, 6 compared to 45% among the general U.S. population. 9 WWUD less often use highly effective contraceptive methods (long-acting reversible contraceptionintrauterine device or implant), and effective methods (hormonal pill, patch, injection, or ring), 7,10,11 while relying heavily on condoms for contraception. 7,12 Condoms are less effective at preventing pregnancy, given imperfect and inconsistent use. Contraceptive use and reproductive choice by WWUD is further influenced by high rates of intimate partner violence and sexual and reproductive coercion. 13,14 While not all WWUD want or need highly or moderately effective contraception, the notable differences in unintended pregnancy rates may indicate a gap in reproductive health access and utilization and necessitates further investigation and interventions. Pregnant and parenting WWUD also face considerable stigma, 15 frequently delaying or avoiding prenatal care, citing concerns around child protective service involvement and potential custodial loss. 16,17 Delays to care contribute to maternal and neonatal complications including placental rupture, premature delivery, NOWS, and intrauterine growth restriction. 18 Gender and sex-related factors unique to women contribute to their initial substance use, progression from initial use to SUD, and substance use disorder (SUD) treatment engagement and retention. 2 WWUD tend to engage in higher-risk injection and sexual behaviors, experience higher rates of intimate partner violence, and have higher risk of acquiring HIV and HCV than their male counterparts. [19][20][21] WWUD from rural communities experience additional layers of risk compared to WWUD in urban settings. 22,23 In rural communities, WWUD experience poorer health outcomes partially due to unique barriers to accessing healthcare and reproductive services (limited service availability, insurance/financial concerns, limited transportation), 22,24,25 and SUD treatment (specialist shortages, 26 drive times to specialists, 27 and ruralspecific stigma 28,29 ). Large-scale efforts are needed to expand access to family planning and reproductive services for WWUD in various care settings, particularly in rural communities where these services are generally lacking. 30 However, there are limited data on current contraceptive use in the rural U.S. by WWUD. We sought to estimate contraceptive use prevalence among WWUD in rural communities compared to a national sample of women from rural areas, one of the first studies to do so. We hypothesized that WWUD in rural communities would have lower prevalence of contraceptive use compared to a nationally representative sample of women living in rural areas. We also aimed to identify characteristics of WWUD in rural communities associated with contraceptive use and to evaluate possible associations between contraceptive use and SUD treatment utilization, health care utilization, substance use, and HIV/HCV testing. We hypothesized that recent SUD treatment and healthcare utilization would be associated with increased contraceptive utilization, those with recent substance use would have reduced contraceptive utilization, and recent HIV/HCV testing would be associated with increased contraceptive utilization. --- METHODS --- Rural Opioids Initiative -Study Design, Participants, and Data Collection This investigation is a sub-analysis of the Rural Opioids Initiative (ROI)a multi-site cross-sectional survey of people who use drugs from ten U.S. states (Illinois; Kentucky; North Carolina; New England which included Massachusetts, Vermont, and New Hampshire; Ohio; Oregon; Wisconsin; and West Virginia) with recruitment from January 2018 to March 2020. 31 The ROI collected data on demographics, drug use, consequences of use, SUD treatment, HIV/HCV screening and treatment, and healthcare utilization. Eligible participants reported use of any opioid via any administration route and/or any other drug via injection in the prior 30 days "to get high" (e.g., smoking heroin; injecting heroin and smoking cocaine; injecting methamphetamine) except for Wisconsin which limited to injection use only. Inclusion criterion for all sites was age ≥18 years old except two states (Illinois, Wisconsin) where the age criterion was ≥15 years old. For this analysis, our study population included all women 18 to 49 years old who were able to become pregnant determined by survey responses. The upper age limit of 49 years aligns with the NSFG. The NSFG includes women between 15 and 18 years old; however, given only two ROI sites included this younger age range, with only two participants otherwise meeting inclusion criteria, they were excluded from further analysis. All sites conducted recruitment using modified chainreferral sampling, 31,32 a strategy based on respondent-driven sampling (RDS) methods to improve sampling of "hidden" populations. 33,34 Study sites identified "seed" participants who represented local population demographics and recruited within their network. Participants were linked via referral chains when estimating weighted prevalence rates. Additional ROI data collection and management details are previously published. 31 The ROI data coordinating center collected, standardized, managed, and distributed data for analyses approved by the publication committee. All study procedures were approved by the Institutional Review Board at each site. --- National Survey of Family Growth The National Center for Health Statistics conducts the NSFG, 35,36 collecting nationally representative household estimates of family planning and reproductive health topics for men and women. 35 The NSFG does not ask about drug use and as a household survey does not include those currently incarcerated or unhoused. 8 The NSFG age limit expanded from 15-44 to 15-49 years old with the 2015-2017 cohort, and purposefully oversamples non-Hispanic Blacks, Hispanics, and teens. 35,36 The NSFG uses U.S. Census Bureau Office of Management and Budget for residence location. We included NSFG respondents residing outside of U.S. Census Metropolitan Statistical Areas to approximate ROI regions. --- Measures We determined the ROI population of reproductive-age women who were not currently pregnant but could become pregnant via survey responses. The ROI survey asked all participants their gender (male, female, transgender, other) and was designed so only participants identifying as "female" were asked their pregnancy status (yes, no, or don't know). Participants who selected "no" or "don't know" regarding pregnancy status were then asked, "Are you using any medical forms of birth control such as pills, an IUD, implant, injection, ring, or patch, or are your 'tubes tied'?" (yes, no, not applicable [no vaginal sex with a male in past 10 months], not applicable [not physically able to get pregnant right nowhysterectomy, health condition, menopause], or decline to answer). Those who answered "yes" or "no" were included in the analysis. We use the term "medical/procedural contraceptive" to encompass all medical forms of hormonal contraception (pill, injection, ring, patch) and all procedural/surgical contraceptive measures (intrauterine device, implant, tubal ligation) consistent with the ROI survey. Participants were not asked additional details about contraceptive methods, family planning preferences, or adequate information to assess use of condoms or other barrier methods as contraception. The primary variable was medical/procedural contraceptive use. Characteristics potentially associated with contraceptive use were examined on the basis of previous literature and a priori hypotheses. 9,37,38 We included categorical characteristics: age; education level; race/ethnicity; relationship status. We included yes/no characteristics: homelessness in prior 6 months; incarceration in prior 6 months; trading sex for drugs, money, or housing in prior 30 days; and having had sex without a condom ≥ 1 time in prior 30 days. We divided SUD treatment service utilization within the prior 30 days into two categories: (1) medication for opioid use disorder (MOUD) use (buprenorphine, methadone, or naltrexone), and (2) SUD treatment via outpatient counseling or inpatient/residential program. Survey participants could indicate use of more than one SUD treatment (e.g., prescribed buprenorphine and engaged in counseling). Another outcome was healthcare location in the prior 6 months with four categories: (1) ambulatory care (private clinician or community health), (2) acute care (urgent care or emergency department), (3) health department or mobile van, (4) no care received. Other outcomes included the following: prior 30-day substance use (opioids, methamphetamine, cocaine, alcohol, or tobacco) and prior year HIV/HCV testing. --- Analyses We used descriptive statistics to summarize participant characteristics, prevalence estimates, and site-specific variation of medical/procedural contraceptive use. Overall, unweighted and RDS-weighted estimates of medical/procedural contraceptive use and 95% confidence intervals were calculated using mixed-effects models. 34 Study site was the random effect in these models, and estimates were obtained by averaging over site-specific effects. We then stratified the data by site to compute site-specific estimates of medical/procedural contraceptive use and bootstrapped 95% confidence intervals. West Virginia was excluded from weighted estimates due to incomplete RDS data at time of analysis. To compare rates of medical/procedural contraceptive use between the ROI and NSFG groups, we restricted the NSFG sample of women to match the ROI inclusion criteria, excluding currently pregnant NSFG respondents, those not sexually active within the past 10 months, and those reporting infertility due to a medical condition or non-contraceptive surgery. Differences in age, race/ethnicity, and education between the ROI and NSFG samples were assessed using chi-squared test with Rao and Scott's second-order correction to account for weighting in the NSFG survey data. We fit a logistic regression model on the pooled sample and calculated marginal means to estimate the rates of medical/procedural contraceptive use in the ROI and NSFG groups after adjusting for demographic differences. Within the ROI sample, we assessed bivariate associations between contraceptive use and participant characteristics using Pearson's chi-square test. Multivariable associations were assessed using generalized linear mixed methods with sitelevel random intercepts between contraceptive use and MOUD treatment; SUD treatment with outpatient counseling or inpatient program; primary care access with ambulatory services (private clinician or community health center); recent substance use; and HIV/HCV testing. Potential confounders with p-values ≤ 0.10 in bivariate analyses were included as covariates in each model, in addition to the main independent variable of medical/procedural contraceptive use. Analyses were conducted in R v.4.0.5 using the 'lme4' package. --- RESULTS The ROI recruited 3,048 participants from eight study sites. Sixteen (0.5%) who self-identified as transgender or other gender and 30 (3.4%) women who were currently pregnant were excluded from the analytic sample. Our sample included 855 WWUD, with average age 33 years (SD 8), who were predominantly White (83%) and insured (79%) (Table 1). Overall, 50% had engaged in condom-less sex in the prior 30 days and 53% had experienced homelessness in the prior 6 months. The overall prevalence of medical/procedural contraceptive use was 36.8% unweighted (95% CI 33.7, 40.1) and 38.6% weighted (95% CI 30.7, 47.2) (Table 2). Overall and site-specific prevalence estimates of medical/procedural contraceptive use are listed in Table 2. In the prior 30 days, 85% of those in ROI sample had used opioids/heroin/fentanyl and 73% had used methamphetamine/ crystal (Table 1). Women reporting not using a medical/ procedural contraceptive were more likely to have recently used methamphetamine than those who used contraception (76% vs. 69%; p=0.021). This difference was also seen in those who used both opioids and methamphetamine (64% vs. 55%; p= 0.015) Women who reported medical/procedural contraceptive use were more likely to have received SUD treatment using MOUD in the prior 30 days (25% vs. 20%; p=0.049) and SUD treatment via outpatient counseling, or inpatient program (33% vs. 24%; p=0.006) compared to those not using contraceptives. In analyses adjusted for age, race/ethnicity, education level, relationship status, recent homelessness, and insurance status, those in the ROI sample who used SUD treatment services via outpatient counseling or inpatient program within the prior 30 days were 50% more likely to report contraceptive use compared to those who had not (aOR 1.50 [95% CI 1.08-2.06) (Table 3). There was no evidence supporting an association between contraceptive use and recent opioid/heroin/fentanyl, cocaine/crack, combined opioid and cocaine, alcohol, or tobacco use. However, those with recent methamphetamine use, whether alone or in combination with opioids, were less likely to use medical/procedural contraceptive than those without recent methamphetamine use (aOR 0.72 [95% CI 0.52, 0.99]; aOR 0.71 [95% CI 0.53, 0.95], respectively). There were 570 women included in the NSFG cohort; 46 were excluded as they were currently pregnant (7.5%). This cohort sample is representative of 7,035,913 housed women of unknown drug use status who live in rural areas. Women in the ROI compared to the NSFG sample of women had a 69% lower likelihood of medical/procedural contraceptive use (aOR 0.31 [95% CI, 0.25-0.4]) after controlling for age, race/ethnicity, and education. Women in the NSFG sample were more racially and ethnically diverse and more likely to have attained some college education or higher compared to the ROI sample (Table 4). --- DISCUSSION Medical/procedural contraceptive use by reproductive-age WWUD in rural U.S. communities was substantially lower (36.8% unweighted across all sites, 38.6% weighted all sites except West Virginia), compared to women from rural communities surveyed in the NSFG, of whom 66% reported medical/procedural contraceptive use. The NSFG likely includes some WWUD; however, given the high prevalence of recent homelessness (53%) and incarceration (40%) among the ROI WWUD, household-based surveys such as NSFG likely miss the majority of those in this highly stigmatized and marginalized population. Our findings highlight the urgency for better addressing the reproductive health and family planning needs for WWUD in rural America who experience marked socioeconomic consequences and medical complications of unintended pregnancies. We found a positive association in the ROI with prior 30day SUD treatment involving outpatient counseling or inpatient program suggesting that these interventions that often involve more time with patients are perhaps more likely to give advice regarding contraception and family planning. While recent MOUD use was greater among women using contraception than those not using contraception (25% vs. 20%), the positive association with MOUD treatment and contraception use did not meet the threshold for statistical significance (aOR 1.34 [95% CI 0.95-1.88]). This discrepancy could perhaps be explained by the high prevalence of methamphetamine use in the ROI population, and current lack of FDA-approved medications to treat stimulant use disorders. Overall, the ROI population had a low utilization of SUD treatment, with 22% recently receiving MOUD and 27% utilizing outpatient counseling, or inpatient programindicating a clear need to expand access and utilization of SUD treatment in rural communities. SUD treatment encounters are a potential missed opportunity to discuss reproductive health and offer contraceptives to those interested. 39 Among the ROI population, 44% reported they primarily utilized healthcare via ambulatory services with a positive association between using medical/procedural contraceptive and prior 6-month utilization of ambulatory services that did not meet the threshold for statistical significance (aOR 1.32 [95% CI 0.96-1.82]), after controlling for insurance status. This suggests that factors besides disparities in healthcare access and availability may be contributing to lower contraceptive use among WWUD in rural areas. Outpatient clinicians caring for WWUD are frequently addressing more acute medical and psychosocial issues and they may wait until patients are deemed more stable before discussing family planning. 40 WWUD, particularly those currently pregnant, face considerable stigmathus may be reluctant or uncomfortable accessing medical services. 41 WWUD may also have less trust in the healthcare system, 42 which, along with child custody and criminal/legal concerns, could hinder counseling on reproductive health. Some women are also equivocal about possibly getting pregnant, and WWUD more frequently report ambivalence around child-bearing or believe they cannot conceive. 43 Clinicians need to consider what constitutes patientcentered contraceptive counseling and family planning, 44 particularly given the stigma, discrimination, and historical harms WWUD have experienced and concerns around possible or perceived coercion. There is a critical need for development of women-specific integrated programs offering SUD treatment and/or harm reduction services with reproductive health services, 30,45,46 in various service delivery models. Pregnant and parenting WWUD may also benefit from these types of care models. 47,48 Rural communities, with less overall healthcare availability, have further limitations in availability of SUD treatment programs that include wraparound services (behavioral health, social services) and family-specific programs. 49 This further emphasizes the importance of primary care clinics in delivering SUD treatment and reproductive health services for WWUD in rural areas. Women with prior 30-day methamphetamine use alone or in combination with opioids had a lower likelihood of using medical/procedural contraceptive compared to those not recently using methamphetamine. Lower contraceptive use in women using methamphetamine is noteworthy given methamphetamine is frequently used for energy and sexual enhancement and is associated with higher-risk sexual behaviors and STI, HIV, and HCV transmission. 50 Of the 855 ROI participants, 50% had reported prior 30-day condom-less sex. Methamphetamine is also disproportionately used in many rural communities, 51,52 and 73% of women in our study reported recent use. Research into the most effective contraceptive options and family planning services for women who use methamphetamine is warranted. HIV/HCV testing within the last year was low, at 35%, regardless of contraceptive use. Women who inject drugs are at higher risk for acquiring HIV, HCV, and other infections, given high rates of needle sharing, high-risk sexual behaviors, transactional sex, and engagement in sex work. 21 Women who inject drugs and those engaging in transactional sex and sex work should be screened for HIV and offered pre-and postexposure prophylaxis (PrEP/PEP) to reduce HIV acquisition risk. 53 Testing and treating reproductive-age WWUD for sexually transmitted and blood-borne infections is important for their health and to reduce the likelihood of vertical transmission if they were to become pregnant. 54 Efforts are needed to expand adoption of clinical practice guidelines around prescribing PrEP/PEP, screening for infectious disease, and offering highly effective HCV curative treatment for WWUD in rural communities in various treatment settings. --- Limitations and Future Directions There are limitations to our study. When participants were asked about contraceptive use, one choice included not using contraception as they were "not physically able to get pregnant right now" with reasons including "hysterectomy, health condition, menopause." Given the incorrect assumption among many WWUD that they are unable to get pregnant, 43,55,56 our sample may underrepresent the number of reproductive-age women who could become pregnant. The cross-sectional survey design only assessed contraceptive use at one timepoint. We also did not collect more detailed information about specific contraceptive methods thus limiting assessing differences in use of highly versus moderately effective methods or use of combined methods. Further research is needed to study contraceptive and family planning preferences and how to provide patient-centered contraceptive counseling for WWUD. 44 The survey also did not ask participants' plans or desire for pregnancy or about their use of condoms or other less effective methods including rhythm or withdrawal as primary or additional form of contraception. The ROI sample also lacked racial/ethnic diversity, a major limitation, given Black, Latina, and multi-racial women face increased rates of reproductive coercion and unintended pregnancy. 57 They also experience gendered racism and reproductive harms by the healthcare system with ongoing mistrust of contraceptive counseling. 58 Finally, the survey only asked female-identifying participants to answer questions about contraceptives and pregnancy. We note that female-identified individuals are not the only people who use contraception, need reproductive services, and can get pregnant. Studies are needed on approaches to best serve people of all racial/ethnic and gender identities who use drugs and who can become pregnant. Some sites had large variation between weighted and unweighted prevalence estimatesparticularly Illinois which went from a 31.1 to 61.9% estimated prevalence. This can be explained by very short referral chain lengths in Illinois for women who reported contraceptive use, leading to these participants being weighted more heavily. The smaller the networkthe number of community connections a participant hasthe more these participants are weighted in statistical calculations to account for the possibility that those with smaller networks (shorter referral chains) represent a more difficult to reach and recruit population when calculating prevalence estimates. --- CONCLUSION Despite these limitations, our study provides important insights into the lower prevalence of contraceptive use among WWUD in rural communities compared to a general population of rural women. Interventions that expand access to and improve integration of reproductive health services within SUD treatment, primary care, and harm reduction programs for WWUD are urgently needed in rural areas. --- Conflict of Interest: The authors declare that they do not have a conflict of interest. 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Refugee Mothers Mental Health and Social Support Needs: A Systematic Review of Interventions for Refugee Mothers

Refugee mothers endure and are at risk for depression, post-traumatic stress, suicidality, and anxiety. There is a gap in the literature regarding interventions for refugee mothers' mental health and well-being. Interventions involving refugee mothers rarely provide adequate support for refugee mothers' specific mental health needs and challenges. This paper presents empirical evidence to contextualize the risks refugee mothers face, such as gender-based violence, mental health challenges, and language barriers. Then, the paper provides a critical systematic review of interventions conducted with refugee mothers. The critical systematic review suggests that creating and providing a safe space, being a linguistic liaison, community-building, and advocating for refugee mothers' needs are emergent protective factors for refugee mothers. Finally, based on the review, recommendations for future interventions followed.

ess are different from men's experiences since many of them are subjected to gender-based violence and persecution (Pittaway & Bartolomei, 2001;Pulvirenti & Mason, 2011;United Nations High Commissioner for Refugees et al., 2016). Women and girls who are normally protected because of their gender now lack that protection and are at risk for gender-specific human rights violations (United Nations High Commissioner for Refugees, 2014b; United Nations High Commissioner for Refugees et al., 2016). Refugee women and girls are especially vulnerable to sexual gender-based violence in refugee camps, where they are often required to walk long distances to get important resources such as firewood. Moreover, they are still at dramatically elevated risk for gender-based violence through migration routes in Europe and even after resettlement (Robbers et al., 2016). The lifetime prevalence of sexual violence against girls and women over 15 in the general population was 11%, while it reached 69.3% of migrants and refugees (Keygnaert et al., 2012). Additionally, gender-based and sexual violence has long-term impacts on refugee women and girls' mental health and well-being including post-traumatic stress disorder (PTSD), depression, anxiety, and suicidality (Robbers et al., 2016). Gender-specific human rights violations have harmful impacts on refugee women's physical and psychological states, which are further exacerbated by the challenges of resettlement (Deacon & Sullivan, 2009;Hynes & Cardozo, 2000;Miller et al., 2002). --- Mental Health Challenges Refugee women have been found to have especially high rates of psychiatric symptoms. Indeed, the traumatic experi ences and post-migration challenges refugee women endure have the potential to reinforce increased vulnerability to psychiatric symptoms and distress including symptoms of trauma, anxiety, depression, somatization, and PTSD (Schweitzer et al., 2018). Given the higher risk of experiencing mental health issues as a refugee during childbearing age (Korukcu et al., 2018), refugee mothers are especially vulnerable to developing mental health issues due to their rapidly changing living situation and circumstances (Degni et al., 2014). For instance, refugee mothers in camps face a high risk of developing a mental disorder, such as depression, and to experience suicidal ideation. Indeed, a study revealed that 36% of the mothers in camps, were diagnosed with a mental disorder, 91% percent of which reported having had suicidal thoughts in the past month ( Rahman & Hafeez, 2003). Furthermore, Schweitzer and colleagues (2018) found that the responsibilities of caring for a child as a refugee represent a risk factor for refugee mothers experiencing higher levels of trauma symptoms and contribute to the development of psychiatric problems such as anxiety and somatic symptoms (Schweitzer et al., 2018). Newly resettled mothers are less likely to seek out professional services due to various barriers including stigma, language, poor knowledge of community services, and prioritizing their children's needs to the detriment of their own well-being (Nicholson et al., 1998); refugee mothers' focus on supporting their children and coping with these barriers leave them at an elevated risk for mental health problems (Betancourt et al., 2015). Thus, refugee mothers face a unique set of challenges that require specialized evidence-based interventions. --- Language Barriers Moreover, the language barrier through the resettlement process is an impediment to refugee women's access to serv ices which in turn can negatively affect their psychological well-being (Hou & Beiser, 2006). This barrier is especially salient in the post-resettlement context where refugee women seldom have enough time and resources to address their educational needs and learn the language of the host country (Watkins et al., 2012). Furthermore, the language barrier disproportionately affects women, as immigrant men have been shown to achieve better proficiency of the host country's language than women due to inequalities in social and educational opportunities (Hou & Beiser, 2006). A Canadian study found that refugee women's English fluency was longitudinally associated with higher rates of employment and lower rates of depression (Beiser, 2009). In a study conducted in Germany, difficulties related to the language barrier were found to be a widespread concern for Syrian refugees which impeded their integration, their ability to socialize, and their access to proper healthcare (Green, 2017). Similarly, an Australian study found that having limited English proficiency increased refugee mothers' risk for marginalization, isolation, and family dysfunction, while a stronger proficiency made them more comfortable accessing mainstream services (Riggs et al., 2012). Therefore, it is critical that language education services consider the needs of refugee mothers to support their host-country language fluency. The mental health difficulties of refugee mothers such as depression, anxiety, trauma, suicidality (Rahman & Hafeez, 2003;Schweitzer et al., 2018), require specialized services because more general mental health services do not simultaneously address their cultural and linguistic backgrounds, their need for community, their mistrust and difficulties navigating healthcare systems in host countries, and the unique adverse experiences brought about by being a mother through the process of forced displacement (McLeish, 2005;Schweitzer et al., 2018;Tsai et al., 2017). Thus, the present paper will consist of a systematic review of interventions for refugee mothers while using specific inclusion and exclusion criteria, identify gaps in the literature, and provide research contributions and practical implications and recommendations for future evidence-based interventions and research. --- Method Search Strategy An electronic search was performed on PsycINFO (the year of 1806 to March 16, 2020), MEDLINE (the year of 1946 to March 16, 2020), and Web of Science Core Collection (accessed March 16, 2020). The search was limited to articles in the English language. The time periods were selected to encompass the year the database was founded to the present date. The following search was performed on all three databases: refugee* AND mother* AND interven*. The asterisk was used in order to truncate search words and include articles that use similar words such as mothers or motherhood, refugees, and intervention or intervening. A second researcher simultaneously conducted the search. The screening process, choice of articles, inclusion and exclusion criteria involved both researchers to ensure inter-rater reliability. Studies were included based on the following inclusion and exclusion criteria: (a) presents an original intervention, (b) focuses on refugee populations, (c) includes or targets mothers, (d) differentiates between data gathered with mother and father refugees, and (e) is not solely medical in scope, (see Figure 1). --- Results The study selection process comprised three databases and incorporated specific inclusion and exclusion criteria. This search resulted in 132 studies. 112 studies were excluded because they did not present an original intervention, with many being qualitative in-depth interviews, research on refugee mothers' reproductive health, vaccine research, and post-partum depression data research. Two studies were excluded because they did not focus on refugee populations, nine were excluded because they did not target or include refugee mothers, five were excluded because they did not differentiate between the needs of refugee mothers and fathers, and one study was excluded because its scope was solely medical. Three studies were included from this search, and three additional studies were found through a subsequent snowball search, which entails consulting the bibliography for relevant papers. Six relevant studies that involved a total of approximately 350 participants were included in the review. --- Interventions for Refugee Mothers --- Children and Mothers in War: An Outcome Study of a Psychosocial Intervention Program The aim of the psychosocial mother-child intervention was mainly to improve child development and well-being through better mother and child interactions, support and education (Dybdahl, 2001). The participants were 87 Bosniandisplaced mother-child dyads. They were divided into an intervention group (psychological intervention and medical care) and a non-intervention group (medical care only). The intervention was based on therapeutic discussion groups for traumatized women in the context of war and the International Child Development Program. The group discussions also involved topics related to mothers' mental health such as symptoms of PTSD, traumatic experiences, exposure to violence, and other adverse experiences lived in refugee camps. Before the start of the intervention, both the mothers and children's psychological, cognitive and physical health were monitored. The study was culturally specific, and Bosnian mental health specialists reassessed and reviewed the instruments used in the study and intervention for cultural specificity and appropriateness. Mothers' trauma and wellbeing were measured using the Impact of Event Scale (IES) and the mothers' interviews pre-intervention and post-intervention provided demographics, perceived social support, and living conditions informa tion. Mothers who were in the intervention group perceived more social support after the intervention and felt they had people to go to for support and advice. Indeed, there was a significant increase in perceived social support between pre-test and post-test in the intervention group, while there was a slight decrease in the non-intervention group (Dybdahl, 2001). There was a non-significant increase in total social support scores; pretest (M = 4.4) smaller than post-test; (M = 5.0), p > .05. There was a significant increase in social support for "advice" scores; pretest (M = 4.7) smaller than post-test; (M = 5.4), p < .05. There was a non-significant increase in mother's well-being for "today", pretest (M = 4.1) smaller than post-test, (M = 4.4), p > .05, and there was a significant increase in mother's well-being for "usually", pretest (M = 3.5) smaller than post-test, (M = 4.6), p < .05. There was a non-significant decrease in mother's well-being for "prefer", pretest (M = 6.2) bigger than post-test, (M = 5.8), p > .05. There was a significant decrease, pretest (M = 71.2) bigger than post-test, (M = 56.1), p < .05 in total IES scores and on the hyperarousal symptoms, pretest (M = 22.7) bigger than post-test, (M = 16.7), p < .05 subscale for mothers in the intervention group, which was significantly larger than the decrease observed in the control group. However, there was no significant difference between the decrease observed in the intervention group and the non-intervention group on the avoidance and intrusion symptoms subscales. Dybdahl ( 2001)'s study is a good example of an intervention program that addressed the needs and prognosis of refugee mothers. However, the data gathered focuses heavily on the children and provides limited insight into the Search Strategy Flowchart impact of the intervention on mothers. While mothers' mental health problems are taken into consideration in the conception of the intervention, it is unclear whether it is efficient in promoting their well-being. Mothers' wellbeing was only lightly discussed in relation to children's wellbeing (Dybdahl, 2001). It is important to note that though the study demonstrated a decrease in mothers' IES scores, those outcomes were not discussed sufficiently. Indeed, the researcher acknowledged that discussing mothers' mental health in detail goes beyond the scope of the paper, but that the IES measures revealed a high level of distress both before and following the intervention, and that the IES scores were related to trauma exposure. It is worthwhile to highlight that the study aimed to be culturally specific and consulted numerous Bosnian mental health workers as it has been shown that culturally specific approaches are beneficial for refugee populations (Tsai et al., 2017;Williams & Thompson, 2011) --- Collaborative Health Education for Somali Bantu Refugee Women in Kansas City The goal of this study was improving the health literacy of Somali Bantu refugee mothers. Eleven Somali Bantu refugee mothers resettled in Kansas City were recruited through a resettlement agency to participate in a health education program held weekly over 12 months consisting of a total of 42 sessions of 90-minutes each (Mulcahy et al., 2019). Rooted in community-based collaborative action research (CBCAR), the small-group sessions took into account the needs and interests of mothers, and consequently included various topics such as family health, nutrition, sexuality, prenatal health, child safety, and mental health. To gain an understanding of the health narratives of refugee mothers through the resettlement process, each mother also participated in an individual interview. Additionally, they completed questionnaires pertaining to their health behaviors, the content of the testing sessions and whether they recalled the information presented. Nutrition was the most requested and discussed topic. Pearson co-efficient analyses revealed a positive correlation between the number of times a topic was presented and the number of women who retained the topic (r = .852, p < .01). Nutrition was the topic with the highest retention, as it was the topic that was presented the highest number of times. The women were interested in discussing nutrition in relation to their own health and that of their child, and nutrition in relation to prenatal health. PTSD symptoms were discussed in terms of the women's exposure to potentially traumatizing experiences, hardship, and violence, but were not endorsed by participants during individual interviews. Finally, the women expressed being generally satisfied with their healthcare access, interactions with doctors, and access to interpreters. Mulcahy and colleagues (2019) conducted the study to improve the health literacy of Somali Bantu refugee mothers. However, the mothers were asked about PTSD symptoms as "feeling sad" by culturally representative professionals with experience working with refugees. Moreover, recommendations in the literature highlight the importance of providing refugees with opportunities to cope with distress and negative affect without forcing them to relive their traumatic experiences (Hansen & Houston, 2016). In addition, women did not endorse PTSD symptoms when individually inter viewed, and the results of the study do not provide information regarding their mental health through the course of the intervention. No other symptoms of mental illness or psychological distress were discussed. Furthermore, despite holding a full session on the topic of mental health, the impact of the session on participants was not discussed in the paper. Despite claiming that some sessions focused on mental health, mental health was not discussed in the article beyond symptoms of PTSD. Additionally, it is stated that retention of the material on mental health was null, and that they found an "inconsistency between personal narrative and recognition of symptoms" (Mulcahy et al., 2019, p. 5). Unfortunately, mental health remains one of the biggest outcomes of concern for refugee mothers and this study did not properly assess nor intervene on refugee mothers' mental health symptoms. --- A Home-Based Intervention for Immigrant and Refugee Trauma Survivors Visiting Moms is a program for high-risk refugee and immigrant mothers and their infants based at the Massachusetts General Hospital Chelsea Health Care Centre (Paris & Bronson, 2006). The intervention program focused on the needs of both mothers and infants and their functioning as a dyad and adopted a community-based approach in which paraprofessionals (obstetricians, midwives, pediatricians, and psychotherapists) provided at-home visits to participating new mothers. To be eligible, due to limited resources, immigrant and refugee mothers underwent a screening process to establish existing risk factors including severe depression, isolation, trauma, risk of child abuse, health needs, and safety of the family environment. 105 mothers participated in the study. The intervention comprised multiple aspects such as education on child development, family advocacy, and social support. In its conception, the intervention program was claimed to be highly individualized, provided holistic support for mother-child dyads, and was rooted in evidence-based practice as well as local realities. However, no details were provided in the article to supplement those claims. Parent-child interactions, and additional stressors, such as poverty and language barriers, were assessed and taken into consideration. The home visitors intervened by using relationship-based model (Lieberman, 2004;Paris & Bronson, 2006). The first step of the intervention was for the home visitor to listen to the mother, which made home visitors realize that the families needed basic supplies. The paper does not specify how information was elicited from mothers. The second step was developing a working alliance. The alliance was developed as the mother and the home visitor got to know each other every visit. The home visitor engaged in modeling and self-disclosure as communicational tools to develop an alliance, to teach the mother certain practices, and to make the mothers more comfortable opening up to the home visitor about their troubles. The last step was expanding the relationship to community supports, such as giving the mothers access to English classes or helping them get a library card. No data was collected to assess outcome measures, as the paper consists of a description of the program. One positive facet of the intervention was advocacy: the home visitors advocated for the mothers and connected them to resources and to the community. The home visitors developed a working alliance with the mothers by supporting their autonomy and fostering their competence. Autonomy was fostered by the home visitor teaching the mother skills that could be useful in the host country. This is important to highlight, as the literature review previously mentioned that newly resettled refugee mothers are less likely to seek professional services because of various challenges, such as stigma and poor knowledge of community services (Nicholson et al., 1998). Thus, the Visiting Moms intervention attempted to tackle important issues refugee mothers face, such as loneliness and lack of knowledge and access to resources. However, the outcomes of Visiting Moms were not formally studied. Therefore, there is no empirical evidence of the efficacy of the program and its impact on participating refugee mothers. Finally, the paper implied different cultural practices may be dangerous for the children, and that they taught mothers to practice those safely. However, the paper did not present an empirical method to define what is safe and unsafe for the children and operated under the assumption that western child-rearing practices are superior to other cultures. --- The Moving Forward Project: Working With Refugee Children, Youth, and Their Families The Moving Forward Project was an intervention program for refugee families based in Saskatchewan, Canada (White et al., 2009). The objective of the intervention was to provide knowledge and skills to refugee parents and youth to support them in efficiently addressing issues pertaining to trauma in the context of resettlement. The second goal was to bring awareness and knowledge of the resources and programs available to refugees and immigrants. The third goal was to improve service providers' capacities, so they can respond better to refugee families' needs. The goals were to be achieved through education, group discussions, resource development and dissemination. The first intake group included seven to ten families from Sudan and Afghanistan, and the second in-take session included eighteen families from Colombia, Afghanistan, Sudan, Burma, Rwanda, Congo, Egypt, Mongolia, Bosnia, and Burundi. There were six-week sessions held with the participants. The intervention's group sessions focused on topics such as the impact of trauma on the family, positive coping skills, and problem-solving skills. It should be noted that the authors did not disclose their data collection process or method. Nevertheless, the study highlighted the importance of relationship-building and support between women. Indeed, they stated that according to theories on group principles, participants would learn they are not alone in their experiences, and they could consequently learn from each other and support each other. They found that the language barriers limited the efficacy of the intervention and that the mothers preferred to talk about sociocultural integration and making Canadian friends instead of talking about past experiences. Finally, they found that the session ended up being gatherings, a construction of a safe space for sharing, and that making the groups open to newcomers contributed to the construction of a safe space where mothers cried, talked, bonded, and laughed together. A safe space in this context refers to any physical space where refugees can feel physically and emotionally safe to express themselves and build social networks (United Nations High Commissioner for Refugees, 2014b). A problematic aspect of the study was how the researchers stated that the language barrier and the refugees' tendency to speak to each other in their mother tongue was a difficulty during the sessions. As the literature has shown, refugees have language difficulties when they arrive to their host country (Green, 2017;Watkins et al., 2012). Conducting an intervention with refugees in the host country language, in a language they either do not know or are struggling with, is a methodological problem. The authors sought to teach the refugee mothers skills (e.g., problem-solving and coping skills to deal with trauma) but claim the refugee mothers discussed their future in Canada instead. However, it is possible that the inability to communicate comfortably in their mother tongue contributed to a general discomfort resulting in hesitancy to share more personal information, although this would need to be evaluated. Certainly, evidence stresses the importance of using a professional interpreter with refugees when professionals do not speak the language, as the language barrier is a major challenge in providing accurate and adequate healthcare (Kavukcu & Altıntaş, 2019;Williams & Thompson, 2011). Finally, though the intervention claimed to delve into trauma, the researchers failed to consider the more specific mental health challenges of refugee mothers and their willingness and psychological readiness to discuss those issues in a language they are not comfortable in. --- Sweet Mother: Evaluation of a Pilot Mental Health Service for Asylum-Seeking Mothers and Babies O'Shaughnessy and colleagues (2012) evaluated a novel pilot intervention for refugee mothers and their infants called Sweet Mother. The objective of Sweet Mother was to promote participants' mental health who have been exposed to adverse circumstances through the resettlement process during the perinatal period. A total of 13 mother-child dyads participated in the study. However, only seven dyads attended many or all of the 21 group sessions, while six dyads only attended between one and four sessions. The intervention was rooted in attachment theory and focuses on building on the mothers' strengths to foster the development of a positive mother-child relationship. Moreover, it adopted a community-building approach to mitigate the negative impact of being separated from their home communities and adopted a participatory approach where children's needs helped shape the group sessions. The intervention consisted of therapeutic infant-mother group sessions lead by specialists. Mothers also participated in individual interviews, in reflective group discussions, and completed questionnaires pertaining to their relationship with their babies at each session. Thematic analysis of the reflective exercises revealed the mothers had an overall positive experience with the intervention. They expressed appreciating a new sense of togetherness, highlighted the importance of their babies socializing with other babies, expressed feeling safe in this group, learned about motherhood and parenting, and valued discussing and strengthening their relationship with their babies. Finally, the CARE-Index, an observation measure for adult-child dyads, revealed that two participants improved the quality of their mother-infant interactions from "seriously compromised" to "of concern", while two mothers remained at the cusp of "of concern" and one mother's scores increased within the "good enough" range (O'Shaughnessy et al., 2012). It is important to note that the results of the Sweet Mother intervention provided an encouraging insight into an intervention model for at-risk refugee mothers with young children. However, as this was pilot study, the scope of the results was quite limited. Only five mothers were evaluated using the CARE-Index, limiting our understanding of the impact of the intervention on mother-child dyads. Additionally, one of the main objectives of the study was to "support maternal mental health by reducing isolation and increasing access to community resources" (O'Shaughnessy et al., 2012, p. 217). Yet, no screening for exposure to traumatic experiences or psychiatric symptoms was performed. Likewise, no identified outcomes were examined vis-a-vis the mothers' psychological well-being. The methodology of the study lacked a direct measure of participating mothers' mental health and general well-being and thus did not properly align with its outlined objectives. Nonetheless, the results of this pilot study and the positive response from participants provide important information on the needs of refugee mothers and the feasibility of such interventions. --- I Think Someone Is Walking With Me: The Use of Mobile Phone for Social Capital Development Among Women in Four Refugee Communities The goal of the intervention was the development of social capital by providing refugee mothers and women a phone. The main component of the intervention was examining the effects of acquiring and utilizing social capita. The intervention encompassed face-to-face peer support training sessions and mobile phones for the timespan of one year. 111 Afghan, Burmese, and Sudanese refugee women and mothers residing in Melbourne participated in the study, and a subset of 29 refugees was interviewed after the one-year period. The phone number provided had many call categories, such as Translating and Interpreting Service (TIS), participants from the same community, and the training facilitator researchers (Koh et al., 2018). Because many refugees struggle with the host language, groups were divided to share a same-language proficiency for oral communication and by culture of origin. The first six weeks, weekly training sessions were conducted, and the consequent five weeks, five bi-monthly training sessions were conducted. The goal of the training sessions was to improve communication skills with community interpreters. The study utilized mixed methods and interviewed a subset of the refugees regarding their perception of the intervention. Intra-community calls were calls made to people who belong to the same community, extra-community calls were calls made to people who do not belong to the same community but live in Australia, and overseas calls were calls made to people in other countries. Analysis of how the phone was used portrayed that intra-community calls represented social capital bonding. Indeed, in each community, the category of the intra-community had a higher number of calls and call durations, compared to the other call categories. The thematic analysis of the interviews found that the perceived effects of the phone were social capital on an extra-community level; the intervention was shown to be beneficial in increasing refugees' interactions with the Australian wider society. According to the refugees, skills taught in the intervention, such as confidence and communications skills, facilitated their interactions with the general host country society (Koh et al., 2018). An interesting effect of the intervention was the strengthening of the community relationships of the mothers. Refugee mothers helped each other through childcare services and driving each other when needed. Furthermore, those with better English language skills would help the ones struggling with the language. The phone improved their social network, which became a source for emotional support and information access. The training sessions happened with community interpreters, and groups were divided as a function of shared mother tongue. This is beneficial as language is an important barrier for refugees (Green, 2017;Watkins et al., 2012). The study being conducted in the refugees' mother tongue, and community interpreters being present increases the validity of the findings. Secondly, the intervention focused on community building, which seems to be a protective factor in the interventions reviewed thus far. Finally, the intervention created a network where the refugees helped and supported each other and were each other's language liaison. The creation of a bond of trust when it comes to information access is important. For example, Persian and Syrian refugees in Germany trust information provided by people in their own social network, who have successfully resettled, the most (Borkert et al., 2018). --- Discussion Refugees are at a highly elevated risk of developing mental illness due to the adverse experiences and instability brought about by the resettlement process (Agic et al., 2016;Crowley, 2009). Moreover, refugee women, and especially refugee mothers, find themselves at a greater risk than their male counterparts to develop psychiatric symptoms and mental health problems (e.g. Rahman & Hafeez, 2003;Schweitzer et al., 2018;United Nations High Commissioner for Refugees et al., 2016). Thus, the current review sought to evaluate existing interventions aimed at supporting the specific needs and well-being of refugee mothers. Despite considerable evidence in the literature demonstrating the need for such interventions, only a limited number of interventions were found. Many interventions involving refugee mothers focus on children and youth or on the family unit as a whole, seldom assess and address the mothers' needs appropriately, and include little consideration for the mother's psychological needs and well-being. The present review suggests that across different populations and methodologies a pattern emerged whereby contact with others with similar experience and culture was essential (Koh et al., 2018;O'Shaughnessy et al., 2012;White et al., 2009). The Moving Forward Project, Sweet Mother and The Use of Mobile Phone for Social Capital Development interventions portray that community building and safe community spaces are protective factors for refugee mothers (Koh et al., 2018;O'Shaughnessy et al., 2012;White et al., 2009). The Moving Forward Project sessions provided the mothers with a safe space and what was described as a gathering (White et al., 2009), to connect with fellow refugees and simply talk, laugh, and bond. Similarly, the mothers experienced a new sense of togetherness in The Sweet Mothers intervention (O'Shaughnessy et al., 2012). Furthermore, refugee mothers felt that The Use of Mobile Phone for Social Capital Development intervention enhanced their relationship with their fellow community members, which provided them a space for emotional support and information access, and a network for exchanged childcare help, and consequently made their life "easier and better" (Koh et al., 2018). This is consistent with previous literature which has demonstrated that connection with those with similar experiences, values, and cultures is an essential aspect of social support (Chester, 1992;Kim et al., 2008;Stewart et al., 2008), which in turn is known to be a protective factor when struggling with mental health issues (e.g., Hefner & Eisenberg, 2009;Kawachi & Berkman, 2001;Watkins & Hill, 2018). Social support from refugees of similar backgrounds and experiences is a critical part of positive integration for refugee women, as it helps them build social capital in the post-resettlement country, allows them to socialize and express themselves, and thus relieve stress. Moreover, group learning in interventions focusing on social support and community building provides refugee women with otherwise scarce opportunities to build new relationships and better integrate in the host society (Saksena & McMorrow, 2020). Furthermore, the refugee mothers benefited from having a safe space to discuss their shared experiences and challenges (O'Shaughnessy et al., 2012;Paris & Bronson, 2006). Having the chance to speak on the phone with members of their own community, in The Use of Mobile Phone for Social Capital Development intervention, or meeting with their community weekly, in the Moving Forward Project, was a positive experience for them (Koh et al., 2018;White et al., 2009). This safe space is especially valuable for refugees as they often struggle to discuss their difficulties in the host country because of various challenges including language barriers, complex intergroup relations, and the lack of access to a platform (Hansen & Houston, 2016). Moreover, creating safe spaces where refugee women can communicate while being physically and emotionally safe is central in helping them build a social network, receive social support, and learn important skills and information from women with similar experiences (United Nations High Commissioner for Refugees, 2014c). Similarly, the United Nation's International Organization for Migration (IOM) has organized safe spaces for women and girls to come together, express themselves safely and openly, and develop positive coping strategies (International Organization for Migration, 2018). The use of such women-centered safe spaces for refugee women and girls has been shown to have positive impacts on participants' mental health and well-being (Jahan Seema & Rahman, 2020). Thus, creating safe spaces for refugee women and girls is an effective way of supporting their post-resettlement needs and improving their mental health, well-being, and resilience through community-building. The review also suggests that having allies increased refugees' willingness to connect more to the host country society (Koh et al., 2018;O'Shaughnessy et al., 2012;Paris & Bronson, 2006). Mothers expressed feeling safer to honestly discuss their situation and experiences relating to resettlement within the context of the Sweet Mother intervention than with other professionals in different settings (O'Shaughnessy et al., 2012). This is worthwhile because newly resettled mothers do not tend to seek professional services because of barriers such as stigma, and lack of knowledge of community services and resources (Nicholson et al., 1998). In addition, having an ally to advocate for them, such as the Visiting Moms intervention working alliance, or the strengthened relationships that were formed because of The Use of Mobile Phone for Social Capital Development intervention helped improve the refugee mothers' daily life and increased their interactions with the extra-community or host country wider society (Koh et al., 2018;Paris & Bronson, 2006). Indeed, community-building in the post-resettlement context leads to better access to health services, and increased access to adequate professional response in cases of gender-based violence (Jahan Seema & Rahman, 2020). Moreover, community programs and safe spaces can be used as an entry point by healthcare professionals to reach refugee women, mothers, and girls, build trust and rapport with the community, educate them on available services and health literacy, and better understand their needs (Abbasova, 2017;Shrivastava et al., 2017). --- Limitations and Future Directions The review only includes scientific articles, published articles, and articles written in English. Plus, the review includes very few studies with great variability which makes generalization across studies difficult. In the future, there needs to be a careful consideration of the creation of safe spaces, advocacy, and community building in the conception of future interventions that aim to improve the well-being of refugee mothers. Future studies evaluating interventions for refugee mothers need to also be evaluated in more systematic ways. --- Conclusions and Practical Implications While refugee mothers are at risk because of various factors, there are not many interventions that aim to meet their specific needs and improve their prognosis and well-being. Even though there are some interventions that incorporate refugee mothers' needs and have positive impacts, they either do not calculate and assess outcomes, or the interventions' methodology does not properly align with their outlined objectives. There is a concern for validity in interventions with refugees that conduct face-to-face training or interviewing in English when refugees have language barriers. This systematic review suggests that emergent protective factors for refugee mothers are creating and providing a safe space, being a linguistic liaison, advocating for refugee mothers' needs, and community-building. Thus, it would be helpful if practitioners and professionals working with refugee mothers educated them and informed them of accessible resources through pamphlets written in their native language, especially those that could enhance community-building and provide safe spaces. Indeed, providing refugee mothers with resources that can connect them to refugees from their own community or culture, rather than general refugee populations, is more helpful for them as they can use their own language or practice their own culture. Furthermore, whatever the institution, having professionals and front-line workers who can speak refugees' native language seems to be imperative for the refugees' knowledge of their rights, the resources they have access to, and the ways in which they can start connecting with the host country's general community. --- Competing Interests: The author has declared that no competing interests exist.

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Activist capitals in network societies: Towards a typology for studying networking power within contemporary activist demands

Network societies are characterized by social media, media that are supposed to level out power hierarchies, making political participation more inclusive and equal. By developing a typology for studying networking power within activist demands in network societies, such technooptimistic/deterministic assumptions are questioned. This typology is based on Bourdieu's conceptual framework of social fields, habitus and capitals and revolves around participating, mobilising, connecting, and engaging capital and how these intersects, overlaps and are used for negotiating recognition which I argue is of pivotal importance in for upholding core positions and thus in todays activist demands. Such core positions are related to networking power, i.e. knowing how and being in a position to network in order to decide about courses of events in the organisation of the demand/ social field and its actions. This largely theoretical account is exemplified from a (n)ethnographic study of a middle-class activist setting in southern Stockholm using online communication platforms in tandem with more traditional offline activist participation to organise and mobilise participation.

Introduction One day I got a message via Facebook suggesting I should sign an online petition against the plans to demolish the old community-run (but city-owned) bathhouse two blocks away from where I lived in southern Stockholm. Since I had enjoyed the bathhouse and their different activities, I signed the petition, joined the Facebook-group, started to follow their Twitter feeds, and added many of the participants as Facebook-friends. I soon came to realise that online visibility through practices of updating on social media platforms such as Facebook and Twitter would get me closer to some of the activists. By echoing popular arguments through practices of retweeting and through posting encouraging entries on some of the core activists Facebook profiles, I was not primarily showing my sympathy for what has been understood as participatory values of activist groups semipublically displaying their communication on social media platforms (see Jenkins, 2006;Bruns, 2008;Shirky, 2009). What I did was to reinforce core positions of certain activists. It became apparent to me that activists using social media platforms are not necessarily equal as the technooptimist/determinist discourse around social media participation suggests, that social media platforms are supposed to level out power hierarchies through lowering the threshold of participation and mobilising political action (as Shirky, 2009 andCastells, 2012 have argued). In this article I challenge such assumptions by suggesting a typology for analysing power asymmetries within activist demands in network societies and discussing what role social media platforms play for upholding these. Before outlining to this typology, I will first attend to some conceptual clarifications and present the bathhouse demand that will be used to exemplify my argument. Activism is approached as a form political participation. Acknowledging the widening understanding of political participation (see Bengtsson, 2008, p. 116;Esaiasson and Westholm, 2006, p. 15), activism could be defined as participation from outside representative democratic institutions, but with an outspoken aim to influence them (Author). It is argued that activism is important for broadening political participation beyond established power elites (Bennett and Amoshaun, 2009). Indeed, participatory democratic theory has its roots in a broad understanding of politics as encompassing areas beyond the Parliament. Contemporary representative democracies cannot include all political demands, since majority decision-making always favours one over another (Mouffe, 2005). Hence, it becomes apparent already here that power cannot be left out of the equation since activist participation is understood as revolving around excluded demands (see also Carpentier, 2011;Fuchs, 2014, p. 55). Laclau's (2005, pp. 73-74) splitting of groups into smaller units of demands -as presenting claims to a certain order -further contributes to this understanding of activism. Demands include both social movement types of participation and short-time commitment to single issues, the two types of political action that has come to dominate the discussion of activist participation. A demand may be formed into a more long-term social movement, or a single-issue campaign that disperses once the demand has been met (or considered lost). For example, people in southern Stockholm started to rally around a rather temporary commitment to a single issue, saving a bathhouse. Some of the participants continued their engagement though by forming a local lobby group SÖFÖ (Södra Förstaden, the Southern Suburb). In this article the focus is on participation in activist demands in network societies. But how are we to understand network societies? In Castells' (2000) famous work, he uses the network as an intersectional concept for overcoming boundaries between society and technology. He describes a tendency to organise processes and functions as networks, the network thus becoming the social morphology of society, influencing everything from processes of production to individual experiences, power and culture (2000, p. 519). Network society therefore has been defined as a social formation with an infrastructure of social and media networks enabling its prime mode of organisation at all levels, individual, organisational, societal and global (van Dijk, 2006 pp. 19-20, 27). According to van Dijk (2006, pp. 2, 23), networks are becoming the nervous system of our society and we can expect them to influence our entire life. It is important to remember when discussing network societies that complex social networks have always existed. Recent developments in communication technology have however made the social network a more dominant form of social organisation (Wellman, 2001). Social media stands out as a defining feature of network societies around which practices are organised, demands are communicated and individuality is negotiated. But how are we to understand social media? I have approached social media as communication platforms where the user him/ herself is able to contribute to the platforms content. Here I rely more on O' Reilly (2005) general definition of web 2.0 than Ellison & boyd's (2007) popular, but more specific, delineation of social network sites (SNS). In my research it has been important to include both interactive and networking functions of social media (i.e. possibilities for user-centric multipath communication and collaboration, what is often implied as the "social" in social media, which is a very narrow understanding of the social, see Fuchs, 2014, pp. 7, ch. 2) without for that sake downplay their broadcasting functions that continue to be central for social media practices (especially among groups and individuals seeking visibility and to create public opinion for a political demand). In this way my approach resembles Jenkins, Ford & Green's (2013) recent account of social media as "spreadable". Spreading I believe is a more accurate description of what is happening on social media than the often-used verb sharing. But in contrast to Jenkins and co-authors I am more critical towards supposed empowering potentials of such spreading (see Fuchs, 2014, 53-54, for an in-depth criticism of their account). To avoid a deterministic or an overtly uncritical understanding of social media platforms, I lean towards Kaplan and Haenlein's (2010, p. 60) definition of social media as internet-based applications that build on the ideological and technological foundations of web 2.0. Indeed, media platforms have a dynamic relationship between the social and the technical (Feenberg 2010). In network societies our communities become increasingly technologically mediated (Andersson and Jansson, 2012, p. 106). In activist demands using internet-based social media platforms, communication practices entangle with the demands' organisational structure and identity to the point that they are hard to separate (Breindl, 2012). Since network societies have emerged largely because of media networks, a study of activist demands in such societies will inevitably put emphasis on practices of social media use, even though these are becoming increasingly hard to separate from the offline, see Baym, 2010;Chadwick, 2013. In the bathhouse demand for example activists relied heavily on social media platforms for communication, organisation and mobilisation, in tandem with more traditional offline methods (such as rallies and demonstrations). Numerous studies have focused on how activists use the internet to mobilise support and organise themselves and their demands (see Breindl, 2012, for an overview). Some argue that internet-based organisation facilitates more horizontal and equal distribution of power, and that politics and participation become more accessible because the internet is supposed to lower the threshold, even for groups previously excluded from the political arena (Jenkins, 2006;Bruns, 2008;Shirky, 2009). While acknowledging that the landscape of power is changing in network societies, there is no reason to believe that increasing organisation in (media) networks will cause a society devoid of power relations. Elias made this argument already in 1939. When people become increasingly dependent on each other, a need to attune conducts arises (Elias 1998(Elias /1939, pp. 51-52), pp. 51-52). Thus, the interdependence of people in network societies corresponds with the increasing importance of managing behaviour (see also van Dijk, 2006;Breindl and Gustafsson, 2011). Power has to do with who can influence, and who is allowed to influence the course of events (Fuchs, 2014, p.70, 218). Hence, power concerns the interdependence between people that today has come to revolve around networking because of increased network organisation and social media use in network societies. What I propose to label networking power revolves around being in a position, or being positioned in a network to exert influence by setting the agenda and defining the reality as well as getting the attention for the information you spread. The underlying argument here being that a democratisation of opportunities for displaying information, information that may or may not spread, does not imply the levelling out of differences between users. As I hope will become apparent towards the end of this article, everyone do not have the same skills, or are in the equal position to spread information, set the agenda or define the situation/ reality and in this way influence the course of events here in an activist demand. Of pivotal importance for my argument is recognition. Who is allowed to exert influence and who is heard in the increasing information buzz in network societies depend to a large extent on recognition. Here social media may be conceived of as sites of power struggles since they have specific mechanisms (algorithms) for the generation of reputation (see van Dijck, 2013, pp. 13, 62) which in turn determines who's information will get noticed or not. Hence, networking power intersects with status, recognition, legitimation and asymmetries between users in terms of visibility and attention (here my account differs from Castells, 2009, idea of networking power as inclusion in important global networks). This is what I intend to study in this article, focusing on relations of power between people within activist demands in network societies. To do this I will exemplify with the bathhouse demand in southern Stockholm. Hence, I will start with a short presentation of this before attending to the typology for studying networking power. The Bathhouse Demand I will illustrate this largely theoretical account with examples from a (n)ethnographic study of a contemporary middle-class activist demand, saving a local bathhouse from destruction. This demand engaged (mostly) inhabitants in the southern Stockholm suburbs of Aspudden and Midsommarkransen. They are among the oldest suburbs, situated close to the waterfront, with buildings dating back to the end of the 19 th century, and located just two subway stops away from the inner city. The two suburbs are populated by an educated and politically aware middle-class. Nearby Midsommarkransen is located the University College of Arts, Crafts and Design, Konstfack, and in Midsommarkransen you also find the community run Cinema, Tellus, where members organise activities, show movies, documentaries as well as children blockbusters. Hence, the suburbs are popular both with urban middle-aged couples looking for bigger apartments without having to go too far away from the inner city, as well as with youngsters studying at, or attracted to, the creative atmosphere around Konstfack. The suburbs are a political stronghold of the Green Party with up to 23 per cent voting for them in the 2010 national elections (compared to seven per cent nationally). Inhabitants in these suburbs started to rally already in 2007, first to renew their bathhouse in Aspudden, and later to save it from destruction. Together with traditional offline activist campaigns, online social media platforms were used to call for engagement, to spread information and to gather support for keeping the bathhouse. The bathhouse was demolished despite of heavy protests, campaigns and even an occupation. Most activities took place during the couple of months leading up to the overtaking and demolition of the bathhouse late November 2009. Some of the bathhouse activists continued their participation in SÖFÖ (Södra Förstaden, the Southern Suburb), a group that has continued to act in the suburbs against development plans, for the preservation green areas and playgrounds among other things. Concerning social media platforms the activists used a blog during the battle for the bathhouse through which they disseminated information, mobilised participation and mocked municipal politicians. During October and November 2009, the activists also used a Twitter-feed, mostly to spread information on activities as well as a means to mobilise participation. For quick mobilisation activist used a text-messaging list. For more lengthy comments, activists posted both on the blog as well as on a Facebook-group Rädda Aspuddsbadet (Save the Aspudden bathhouse). SÖFÖ use both a Facebook-group and at Ning-community platform on which participants have their own profiles, can connect and message each other as well as start discussions, specialised groups, blogs et cetera. The study of this activist demand article was conducted within a larger project researching rationales of political participation in network societies. In previous publications on this demand I have discussed the importance of the values of reflexive connectivity and responsiveness and how these values encouraged/demanded a social negotiation of activists' selves, something that was done through practices of updating (Author). Furthermore, I concluded that these values, largely connected to using online social media platforms, seemed to push/discipline activists to participate (Author). Revisiting my interview material and field notes I also conclude that the location itself, the southern suburbs, were important around which values were negotiated. Activists talked about a unique southern suburb character consisting of old buildings among green leafy areas as well as neighbours knowing each other and doing things together, such as running the Aspudden bathhouse and cinema Tellus. The bathhouse was frequently described as a non-commercial meeting place, run by the inhabitants for the inhabitants, a symbol of a cherished value of a location bound community of neighbours. Accompanying this was a value of being active, involved, to voice concerns and show support for the demand. But rather than to be reactive, participants should be proactive, i.e. do something and engage others. The individuals that were held in high regard were the engaged ones, so-called "fire starters" and activists who succeeded in engaging many others to the cause. These values are important if trying to understand practices positionings within the activist demand which leads to the next section. --- Positions and habitus within activist demands According to Bourdieu (1985, p. 724 and1987, p. 2) agents are defined and act according to their position in social space. Here I depart from an assumption that how participants establish their position within a demand, structures the values of the demand and vice versa. Hence, the shared values (such as the ones briefly discussed above) should be analysed in intersection with how activists position themselves and others in relation to these. Bourdieu's conceptual framework of social fields, habitus and capitals are useful for such analysis. Starting with social fields, Bourdieu is somewhat unclear about the differences between the terms social space, world, field and sub-field. In one instance he talks about the political field as consisting of sub-fields of parties and unions, which could lead one to argue that activism is a subfield within a larger political field (1985, p. 737). Unfortunately Bourdieu does not guide us how to delineate between fields and sub-fields here. But his definition of a social field can be connected to Laclau's understanding of demands. Bourdieu (1993, p. 16) defines a social field as a collection of people that gather around a common belief worth fighting for. Agents within the same field can be of different opinions; it is the belief that the fight is worth the effort that binds them together (1993, p. 17). In southern Stockholm, the fight for the bathhouse was the common demand that bound activists to each other as a field in the first place. Of prime importance here, is that Bourdieu (1985, p. 724) describes a social field as a multidimensional space of positions and positionings. In this article I focus on two positions, belonging to the core and to the periphery with the assumption that core positions entails greater opportunities for setting the agenda for the demand and defining the situation in which the demand is operating in, and in this way exerting influence over activists positioned more to the periphery of the field, networking power in other words. Core/ periphery positions are also underlined by Castells (2009, pp. 26, 34) who argues that practices of positioning within a community are primarily used to determine core/ periphery positions. In online activist demands such positions have further been conceptualised by Breindl and Gustafsson (2011) as concentric circles of participation. Core activists are the leaders, setting up email lists, creating applications, being in charge of following the political process, analysing as well as orchestrating the campaign. Fuchs (2014, p.86, with reference to Gerbaudo, 2012) refers to such core-activists as soft leaders, choreographing protests by being in charge of most of the communication flow. More towards the periphery we have occasional contributors who follow what core activists (soft leaders) do and participate from time to time, and mere followers who are inscribed on discussion lists and possibly spread information, but do not actively contribute to the organisation of the campaign itself (Breindl and Gustafsson, 2011). In southern Stockholm, and resonating with the value of being proactive rather than reactive as well as with the account of soft leadership, belonging to the core or the periphery was divided along lines of who updated/ engaged others and who were updated/ engaged by others. Being updated indicated a more peripheral position, while being in charge of doing the updating, indicated a more central position. This was clearly illustrated by one (core) activist when asked about her Facebook practices; she stated she received no information online, she gave information there. It is important to underline that core positions tend to be less stable today in network societies where participants rather unite around temporary demands (so called issue engagement -see Author). Nonetheless, by taking control of information spreading and negotiating recognition and visibility, social media platforms offer spaces for some to negotiate core positions and thus having priority in setting agendas and defining the reality. The question that arises, and that I will devote the remainder of this article, is how this is done. To understand why certain activists come to be entrusted with, hold and maintain core positions, Bourdieu's concept of habitus is helpful. Habitus refers to socially learned dispositions, the sense of one's place, the luggage an agent carries with him/her, which in turn positions the agent in relation to language, culture, class and the future (Bourdieu, 1987, p. 5 and1993, pp. 12-14). Andersson and Jansson (2012, p. 38) describe habitus eloquently as acquired knowledge that give the bearer a sense of an embodied navigation skill on the field in which he/she is acting. An agents habitus both have a bearing on the field, in terms of organising, structuring and determining how field practices are conceived (Bourdieu, 1993, p. 300), as well on the agent him/herself, by being connected to his/hers position within the field, providing meaning to practices and perceptions (Bourdieu, 2010(Bourdieu, /1984, p.166, p.166). If we apply the concept of habitus to the bathhouse demand, core activists referred to experiences from solidarity and animal rights movements. Engagement in the cinema Tellus also seemed to have built both a sense of a southern suburb community feeling, as well as skills and knowledge for organising and mobilising participation (i.e. being proactive). Interviewed activists also referred to experiences from student councils, student nations and the scout movement and similar organisations. Talking to activists and asking about important skills and knowledge for their participation and how these had been acquired, many referred to previous experiences in such organisations, organisations that indicate that they have had a middle-class upbringing. Similarly, Breindl and Gustafsson (2011) argue that activists closer to the core often possess educational knowledge, social, technical and organisational skills. Habitus is thus also connected to class. Several studies have underlined that users from lower socioeconomic groups tend to be less skilled in using digital platforms, hence pre-existing inequalities are both reflected and perhaps increased online (DiMaggio et al. 2004;Hargittai 2008;Gui and Argentin 2011). A report from the OECD (2010) concluded that the digital divide in education is along lines of skills of use rather than access, i.e. between those with the competencies and skills to benefit from computer use and those without such competencies. Such skills and competencies are influenced by socio-economic factors (DiMaggio et al. 2004). Also Hargittai and Hinnant (2008) found that among American young adults (18-26 years old), those with higher levels of education and wealthier parents (i.e. habitus) used the web for more capital enhancing activities (see aslo Gui and Argentin's, 2011 study among high school classes in Italy). Hence, those coming from wealthier socio-economic backgrounds and with better education seems to be better equipped to manage and controlling their online activities to negotiate and reinforce core positions. Habitus thus influences networking power. Here it is also important to underline timeliness and circulation of information (Chadwick, 2013, pp. 87, 190) i.e. knowing when to inform, when to delay, when to spread. Hence, to successfully navigate the social fields of contemporary network societies depends on networking skills, skills that are intertwined with our social learned dispositions (i.e. habitus). Such skills have a bearing on the field in terms of how practices are organised, structured and conceived. Concepts such as online social networking skills, networking skills and digital literacy have been elaborated in order to map differences among users and groups of users in their ability to process meanings of digital content, and why some are more successful than others in negotiating core positions online (Breindl and Gustafsson, 2011;Hsieh, 2012). I have myself previously underlined that online social networking requires a new form of competence in order to manage ones visibility online at the same time avoiding being subject for surveillance (Author). Breindl and Briatte (2013, p. 34) also talk about digital protest skills as the combination of social and technical skills aimed at online collective action. Charisma and social competencies could be conceived of as resources for networking. Studying activist core positions in southern Stockholm, it became apparent that their actual and perceived networking abilities, intertwined with their habitus, in turn were intertwined with previous achievements, active participation and successful mobilisation of others. All this leads me to Bourdieu's concept of capital. An agent's habitus and composition of capital can not be understood as apart, since the manner in which an agent uses capital(s) reveals how the agent acquired it and therefore also how the agent is predisposed to use it (Bourdieu, 2010(Bourdieu, /1984, pp. 58, 61), pp. 58, 61). Bourdieu (1993, p. 269) defines capital as a social relationship, an energy that exists and produces its effects within the field it is used. Capital represents a power over the field "like aces in a game of cards that define the chances of profit in a given field at a given moment" (Bourdieu, 1985, p. 724). --- Activist Capitals in Network Societies Profit here is to be understood as positions more to the core of a demand (or field to use Bourdieu's terminology). The notion of capital is related to practices of positioning because capital use cannot be understood without reference to the agent's habitus, position within the field, and in turn, the field position is dependent on the specific capital the agent can accumulate (Bourdieu, 1993, p. 269). There have been many attempts to outline internet specific capitals, also by references to Putnam's (2000) often cited elaborations of Bourdieu's social capital. Ellison et al. ( 2011) for example discusses online social capital, or socio-technical capital, as based on technological affordances. One of the most detailed accounts is Urry's (2007) outline of network capital. He argues that contemporary societies are more and more organised around the value of circulation -mobilitiesand by investigating how social relations change from such mobilities, he discerns an ability to form and sustain networks, something he labels network capital (Urry, 2007, pp. 196-197). This is about the potential of being mobile and connected at the same time, the capacity to engender and sustain social relationships with those people who are not necessarily geographically proximate but do generate emotional, financial and practical benefits. According to Urry (2007, p. 198) network capital is a product of increasing possibilities of relations between individuals afforded by travel and communication technologies. The importance of values of connectivity and responsiveness thus resonate in Urry's reasoning. According to him, network capital is about being connected, making yourself connectable for capital enhancing purposes (Urry, 2007, p. 203), networking in other words. At the same time the aforementioned ideas of networking skills and digital literacy underline that not everyone is equally skilled/ prepared/ socially equipped in using social media platforms for accumulating such network capital. And this is concnerns how communication technologies are used rather than access to them. The suggestion here is that Bourdieu's conceptual framework could inform a typology of capitals that could be used for studying networking power within activist demands in network societies, how certain come to occupy core positions and others not. I will therefore suggest a typology of four different, but overlapping forms of capitals: participating, mobilising, connecting and engaging capital. Starting with participating capital, in southern Stockholm, the value of being active and engaged made it possible for certain activists to accumulate and use a type of participating capital when positioning themselves in the field. For example, many postings on Facebook revolved around having attended rallies and campaigns. Similarly, in Breindl and Gustafsson's (2011) study, individuals holding power in activist networks were generally the more active ones. The number of postings/actions of a user and their level of participation in a shared project has become a currency in many online environments (Bruns, 2008, p. 55). But being active was not enough to accumulate this capital. You had to be recognised for your participation. This explains the importance to update others on your participation and make it visible online. Such practices can thus be understood as acts of positioning within the activist field. This resonates in Biggar's (2010) study of crowdsourcing activities. He claims that taking part in such activities is about building one's online portfolio and leveraging one's cultural and social capital within a community (Biggar, 2010, p. 10). In southern Stockholm, to write to politicians, being their watchdog and bark as soon as they did something considered bad for the cause, was also a way to collect this participating capital. For such activities, activists needed to possess knowledge on how society and politics work (cultural capital) in order to appeal a decision as well as knowing were and how to find information (cultural capital) and a sense of knowing how to navigate the field (habitus). Here we can clearly see that there is an exchange between habitus, cultural and participating capitals. While participation was considered important, there was another thing that was perhaps even more recognised in southern Stockholm, mobilising others. As discussed previously, there is a difference between peripheral activists and core activists along lines of who updated others and who were updated. Or in other words, there is a difference between those who are expected to be mobilised and reactive and those who are proactive and mobilising others. In southern Stockholm for example, one core activist was mentioned several times for what was labelled as an "infectious" engagement. Hence, what can be discerned here is a type of mobilising capital. Similarly, Breindl and Gustafsson (2011) refer to temporal elites whose power comes from the possibility of mobilising others. Indeed, the creation of online content is of small matter without a large enthusiastic audience to use the technology to its full potential (Kaye, 2011, p. 208). Thus, recognition is also about having a wider supporting group who can spread information through social networks and rapidly mobilise. I would like to differentiate here between mobilising within the demand and connecting outsiders to the demand. According to Castells (2009, pp. 45, 430) it is along lines of who has the ability to connect networks to each other that constitutes (networking) power in network societies. Online communication has enabled individuals to act as social switchboards, centre points for multiple changing and overlapping networks of interaction. Nodes/ activists that can act as switches between networks/ demands become fundamental sources of networking power. This relates to discussions of bridging social capital. In contrast to bonding social capital, bridging social capital refers to connections with weak ties (Granovetter, 1973;Putnam, 2000). The importance of bridges can be traced back to Heidegger and Simmel (discussed in Urry, 2007, pp. 31-32) who pointed at the possibility of bridges to bring streams, banks and land into each others neighbourhood, and hence reorganising the ways people moved within an area. In network theory, researchers have underlined bridging capital as most important for networking power because they give people access to new and different resources, not the least through connections with weak ties (Baym, 2010, p. 136). Weak ties are conceived of as resources since it is through such ties that new information/ opportunities reach in-groups of users, and it is through weak ties a community/ group or demand can reach out to others (Granovetter, 1973;Wellman, 2001;Ellison et al., 2011). The activists I interviewed in southern Stockholm were all active in other demands at the same time as fighting for the bathhouse. Some activists explicitly tried to create connections between the bathhouse activists and other groups they participated in. I call this connecting capital. This capital can be accumulated if the information that a user posts goes viral. Bennett and Segerberg (2012) have discussed such easy-to-personalize action themes (memes) that travel through personal appropriation and spreading as connective action. This is clearly intertwined with creating visibility for a demand and being in a position to spread information online, things that are of pivotal importance for activists today. Connecting capital also implies that users need to gather connections in order for the information they post has the possibility to go viral. But connecting capital also has to do with stratified attention structures already existing within a network. Highly recognised users in the online attention economy determine what information gets spread or not (as Nahon and Hemsley, 2013, convincingly have argued). Their networking power makes them into gate-keepers of what information goes viral or not. Barabási (2011) has criticised the notion of week ties in favour of intermediate ties. I find this notion helpful for further delineating connecting capital to something that I suggest labelling engaging capital. It is one thing to connect activists, groups, demands together, spread information and create visibility in connective information flows online, and another thing to engage these other activists in actions. According to Barabási, engaging others (to an activist demand for example) do not come from weak ties but from intermediate ties since users rarely pay attention to the weak ties in their networks, overflowing with updates and information from ever growing social networks. Here there is a difference between spreading information from others in your networks (connecting capital) and to act on calls for arms. And for this intermediary ties (and not weak ones) are important to understand who possesses the ability to engage other groups and activists to a demand. In Southern Stockholm for example an artist managed to engage her colleagues in an art barricade. Other examples are activists who also were active politicians (in the Green Party) and thus functioning as important intermediaries between activists and the political system. This reasoning further resonates in Breindl and Gustafsson's (2011) claim of the existence intermediary elites in contemporary societies. All these capitals have ultimately to do with negotiating recognition as an activist, recognition that could be exchanged into a core position (depending on the habitus of the activist). For example, participation has to be displayed to, and recognised by, connections within the demand in order for accumulation of participating capital to take place. Mobilising capital can be accumulated if one is recognised as successful with mobilising ones network connections, i.e. getting other activists within the demand to act. Connecting capital can be accumulated if connecting other activists or groups outside of the demand to the cause and being recognised for this. And finally engaging capital can be accumulated if this connection is of that sort that these other groups and activists will be engaged in action in ways that others within the demand appreciate. Recognition thus concerns the evaluation of actions, participations and displays by others/ peers, and this is one area in which social media is important, for turning capital accumulation into recognition. Insert figure 1 --- about here The focus on recognition underlines the interdependence of individuals (here activists) in network societies. But this also has to do with an activist's skills and position in the network to begin with. In other words, an activist's habitus is of importance if being able to turn participation, mobilisation, connections and engagement over into a core position. Habitus also matters if able to use experiences and actions from other activist demands to accumulate capital within the particular demand under study (as the arrows in the figure above illustrates). Connecting and engaging capital clearly concerns putting connections from other demands to use within the demand under study. Participating capital can also be accumulated, with the help of habitus, from actions in other demands. Analysing recognition we thus have to consider previous experiences in order to understand why certain activists come to occupy core-positions. Or as Bourdieu (2010Bourdieu ( /1984, p. 105) , p. 105) frames it, agents enter the social field with previously acquired capital. In another text he discusses agents entry into a field already with a kind of legitimacy as agents from previous fields (Bourdieu, 1993, p. 100). In other words to discuss these capitals it is important to consider the in-group versus the out-group in the capital accumulation. The negotiation for recognition it seems could only take place within the demand (the in-group). However, some of the capitals discussed above were dependent on involving outsiders, such as connecting, engaging and to some extent participation capitals. In southern Stockholm it was apparent that activists' previous experiences were used to negotiate core positions. Activists who had a track record were for example often referred to in the interviews as important for the bathhouse demand. Examples from southern Stockholm range from being recognised as efficient runners of the cinema Tellus, reputation as having successfully led political actions, or having organised campaigns. The boundaries of an activist demand are thus very permeable. Bourdieu (1987, p. 4) himself mostly talk about economic capital (the accumulation of money), cultural capital (the accumulation of qualification, education and knowledge), social capital (the accumulation of social relations) and symbolic capital (the accumulation of reputation). It is apparent by focusing on recognition that I am exploring the terrain of symbolic capital in Bourdieu's terminology. In information overloaded network societies, getting noticed is everything. Networking power underlines that this unequal distribution of attention and visibility influence others, actions and definitions of reality within a demand. Social media can thus be conceived of as sites for power struggles as they have specific mechanisms for the generation of recognition and visibility. Van Dijck (2013, pp. 13, 62) talks here about a popularity principle, important for users recognition, but also, underpinning a so-called attention economy of social media. This attention economy online is indeed stratified, as powerful media conglomerates are better in attracting attention than others (Fuchs, 2014, p. 82). Concerning activists demands I also argue that attention is unequally distributed among activists within the same demand. And on social media platforms, recognition is relatively easy to negotiate because here relations are counted, measured and put on display together with ones ability to attract and maintain relationships with (like-minded) others (van Dijck, 2013, p. 62). This argument is perhaps better illustrated if related to the notion of fitness in network theory (Barabási, 2011). If we take the notions of nodes and links in network theory and replaces nodes for activists and links for connections between activists, fitness would refer to an activist's ability to attract other activists and connect with them. Being recognised as an activist would make the activist more fit, in the sense of being more likely to attract the attention of other activists and form relationships with them. In information overloaded network societies, knowing who to trust and who to connect to, is increasingly based on agents past achievements and others evaluation of these (Urry, 2007, p. 221). Recognised activists will become even visible since others are more likely to stumble across them online, learn about them, connect and link to them and hence contribute to their on-going accumulation of recognition as the popularity principle postulates. For example, rather soon after having joined the bathhouse campaign I come to realise which were more esteemed simply by observing who was retweeted and whose Facebook-postings received links and likes. In this way recognition could also be understood as a measure of habitus, of who possessed a sense of knowing how to navigate the field of activists demand. I have discussed here the differences the online makes for displaying and using recognition to negotiate core positions, not the least through popularity principle (van Dijck, 2013, pp. 62). But it was also apparent to me that the online was interlinked with the offline and not easy to separate. In the bathhouse demand for example activist participating in offline actions put them on display on their social media profiles. Information about, and call to arms for offline actions, were most often posted online. Hence, social media do not replace offline collective action and actions that involve spatio-temporal presence. Bourdieu (2010Bourdieu ( /1984, p. 81) , p. 81) claims that each field sets it highest price on the outcomes being created within it. In activist fields it is clearly the actions themselves that are the most desired outcome. Offline actions thus mattered as apparent in the elaboration of the typology above. It is one thing to be able to connect people/ groups/ demands online in order to spread information and increasing visibility for a demand. But it is another thing to engage these others in offline collective actions. In southern Stockholm mobilising capital was accumulated mostly by engaging demands sympathisers in offline actions. Indeed, activists' actions may only take place online (as in the case of hacktivism and Anonymous), but it seems to me that most activist actions still mainly take place offline. There is a difference between spreading information through networks connections online and to act offline and in activist demands it seems that offline actions are the more valuable for accumulating participating, mobilising and engaging capital. What is happening in today's network societies though is that such capital is mostly negotiated for recognition (displayed) online on social media platforms. It thus becomes increasingly difficult to separate the online from the offline here (as also others have argued, see Baym, 2010;Chadwick, 2013). Indeed as Chadwick (2013) argues, activist actions often combine online and real-space behaviours and impacts (p. 189) and activists often operate in hybrid media ecologies (p. 193) in which both online and offline media has a role to play. --- Conclusion To understand networking power within activists demands I have outlined a typology of activist capitals out of an argument that recognition is becoming increasingly important for understanding relations of power in network societies characterised by social media platforms that in turn are characterised by an attention economy and popularity principle. This typology could be used for studying networking power in terms of who come to occupy core positions in an activist demands. In other words, holding a core position is connected with knowing how to network, gaining recognition through participating, mobilising, connecting and engaging activists to the demand. This is dependent on the habitus of the activists, their luggage of previously learned skills and sense of knowing how network in order to navigate the fields of activism in a network societies. While far from a detailed account, the aim here was to contribute to the understanding of contemporary activist participation in network societies and how relations of power are still at play in the form of networking power, even though it has been widely claimed that the internet and social media lowers the threshold for political participation. By outlining a typology of capitals, exemplified with the activist demand in southern Stockholm, the aim has been to suggest a way to study why certain activists come to occupy core positions and others more peripheral positions. I hope this typology has provided some understanding for the complexity of positions and positionings in an activist demand in a network society, and the intricate workings of how positions are gained and upheld, even in an affluent Swedish neighbourhood amongst a relatively homogenous group of people. Indeed, the typology would probably have to be modified and developped if put to use in a heterogeneous setting populated by a more unequal crowd and context. Hence, the aim at this stage is not generalize but to suggest and hopefully to inspire further exploration into the complexities that may emerge when negotiating power today. Empirical studies are needed in which this typology will be put to use, be criticised and further developed. I for one will work with this in the future in order to more empirically and carefully map the distribution and volume of the different capitals here outlined in the bathhouse demand. However, this will be another article. So what are the implications of these findings other that relations of power are still at play in activist demands today? First of all this typology has implications for the study of power in todays network societies. By conceiving power as relational and networked, evolving from exchanges between interdependent people and technologies allows us to move away from categorizing people who are powerful or not and instead focus on the diversity of mechanisms and interactions that enable power to be exercised. Indeed, as Chadwick (2013, p. 207) has argued, power is shaped by hybrid networks in which both social and technological nodes have agency in terms of their interdependence and interactive exchanges with other nodes in the network. Social media platforms are neither neutral nor a determinant of change. Second I believe this indicates the importance of practices of updating in network societies. Networking power is time bound to the participation of the user. Hence, constant participation in the form of continuous practices of updating is mandatory for negotiating the recognition that is needed to occupy of core-positions. Activists in southern Stockholm, that had not participated for some time, lost recognition and thus also their core-positions. One activist for example complained that he had to start from scratch after having been offline a longer time. He was left behind in plans, discussions and had not participated in several events. As I have argued elsewhere (see Author) the logic of social media requires users to be present, archive connections, update and be updated. And as I have argued here, time spend on social media platforms could generate recognition through participating, mobilising, connecting and engaging capital. However, time spent online is also contributing to the economic value of social media companies (van Dijck, 2013;Fuchs, 2014, p. 114). We should not forget that capitalist companies own social media platforms. There is another layer of power at play here, economic power and exploitation of visibility seeking and recognition accumulating social media users. Economic capital is accumulated for social media owners when users use these media, even if used to negotiate corepositions within a for example counter-capitalist political demand. Hence, it becomes apparent that social media practices are informed by the capitalist logic of the companies that owns these platforms and capitalise on users updating practices. A third implication thus is that being online and updating social media profiles with information, users are making themselves surveillable and exploitable for capitalist companies. The logic of updating thus feeds neatly into the logic of capital accumulation and the business models of social media companies. In this way participation and political expression, organisation and mobilisation becomes subsumed under economic capital (Boltanski & Chiapello, 2005). --- About the Author --- P. DiMaggio, and E. Hargittai, and C. Celeste, and S. Shafer, 2004. "Digital Inequality: From Unequal Access to Differentiated Use," In. K.M. Neckerman (editor). Social Inequality, pp. 355-400. New York: Russell Sage Foundation. N. Elias, 1998. "The Social Constraint towards Self-Constraint," In S. Mennell and J. Goudsblom

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Health mediators as members of multidisciplinary group practice: lessons learned from a primary health care model programme in Hungary

Background: A Model Programme of primary care group practices was implemented in Hungary between 2013 and 2017where virtually all GPs had worked in single practicesaiming to increase preventive service uptake and reduce inequalities based on a bilateral agreement between the Swiss and Hungarian governments. Group practices employed a wide variety of health professionals as well as support workers called health mediators. Employment of the latter was based on two decades of European experience of health mediators who specifically facilitate access to and use of health services in Roma minority groups. Health mediators had been recruited from local communities, received training on the job, and were tasked to increase uptake of new preventive services provided by the group practices by personal contacts in the local minority populace. The paper describes the contribution of the work of health mediators to the uptake of two new services provided by group practices. Methods: Quantitative analysis of depersonalized administrative data mandatorily reported to the Management of the Programme during 43 months of operation was carried out on the employment of health mediators and their contribution to the uptake of two new preventive services (health status assessment and community health promoting programmes). Results: 80% of all clients registered with the GPs participated at health status assessment by invitation that was 1.3-1.7 times higher than participation at the most successful national screening programmes in the past 15 years. Both the number of mediator work minutes per client and participation rate at health status assessment, as well as total work time of mediators and participants at community health events showed high correlation. Twice as many Roma minority patients were motivated for service use by health mediators compared to all patients. The very high participation rate reflects the wide impact of health mediators who probably reached not only Roma minority, but vulnerable population groups in general.The future of general practices lays in multidisciplinary teams in which health mediators recruited from the serviced communities can be valuable members, especially in deprived areas.

Background Single-handed vs group GP practices in primary care General practices may operate as single practices or as groups of self-employed physicians. Group practices comprise the majority in some countries such as Great Britain where 85.5% of all practices were group practices in 2010 [1]. Single-handed practices remain dominant in other countries such as Hungary where all public health insurance-funded practices had been operated singlehandedly by GP practitioners up until 2013. The present paper introduces the contribution of a new support worker called" health mediator" of the multidisciplinary GP group practice based on the experiences of a primary health care Model Programme that established group practices in primary care in Hungary since 2013. --- A novel model programme of multidisciplinary group practice in Hungary Core features of tax-funded primary care in Hungary are similar to that of the UK. Primary medical care is provided by general practitioners [2] whoas opposed to those in the UKoperate single-handed GP practices aided by one or more practice nurses. Coverage is based on a mandatory health insurance scheme with no opting-out [3]. The provision of primary health care is the responsibility of local municipalities, whereas it is financed by the national health insurance fund. The health status of the Hungarian population has long been below the European average [4], partly due to the insufficient uptake of health services in general, and preventive services in particular that has been shown among the largest (Roma) minority [5] as well as in the general population [6]. In order to improve preventive services in primary care, a Model Programme established and funded by the Swiss-Hungarian Cooperation [7] had introduced group practices in primary care in 2012 in the two economically most disadvantaged regions of the country as described in the Operations Manual of the Programme [8] and elsewhere [9]. The Swiss-Hungarian cooperation was set up to promote the reduction of economic and social inequalities within Hungary by implementing mutually agreed projects in various fields. The Model Programme was agreed upon in the field of health care services. Briefly, 24 GP practices were selected on the basis of demographic and population health data, number of vacant GP practices in the region, and willingness of general practitioners and their host municipalities to participate. Four groups of general physicians designated as GP clusters, each consisting of six general practitioners were organized and received funding to employ a range of ancillary health workers such as public health specialists, dietitian, physiotherapist, health psychologist [10]. The specific aims of the Model Programme were to extend public health services in a cost-effective manner to all population groups, particularly disadvantaged ones, to reduce health inequalities. In addition to acute and chronic care, new services were offered (not available in other GP offices) such as lifestyle counselling, nutritional, physiotherapy and psychological services, as well as health promoting community programmes as published in detail elsewhere [11]. An important new service of the group practices was the provision of an invitation-based health status assessment or general screening (investigation of cardiovascular and cancer risk factorsexcluding cervical and breast cancer screening organized by a national public health agency -, based on health examination and questionnaire survey) as mandated by law since 1999 for adults on a regular basis depending on age [12] which has not been done systematically by GPs unless specifically requested by their patients/ clients. The dismal health status of the Hungarian population, the low uptake of health status assessment available from GPs, the low uptake of preventive services in the general population and in minorities referred to above made it necessary to include health status assessment in the GP clusters' services at the beginning of the Programme. All adult clients of the GPs were individually invited in writing to the health status assessment carried out by non-medical workers at the beginning of the Programme which was followed by a medical risk assessment carried out by the GP. Based on its results, patients were directed to various paths (further medical examination, or any of the new services: individual or group lifestyle counselling, or specific nutritional, physiotherapy, etc. services, or health promoting community health programmes). Tailored lifestyle counselling and health promoting community programmes were also recommended to patients who had already been in chronic care. --- Employment of support workers called health mediators in primary health care The involvement of support workers (community workers) with no professional qualification in primary health care has a long history around the world. Chinese peasants with a few months of training ("barefoot doctors") provided basic care to large segments of the rural population from the 1930s onward. This model was taken up by other developing countries worldwide in order to address the problem of unserved population groups due to shortages of professional health care workers [13]. The World Health Organization recognized the important role of community health workers in providing essential primary health care services and thereby reducing health inequalities, and recently issued policy guidelines for creating relevant programmes [14]. The mostly Roma minority disadvantaged groups of the developed countries of Europe posed a different challenge. Roma minority groups had difficulties accessing and/or utilizing various public services, or/and expressed mistrust in these services. As a means to decrease mistrust and clarify misunderstanding between governmental agencies and minorities, mediation had been introduced in France and Finland in social services in the 1960s with the ultimate aim of increasing the access and uptake of those services [15]. Mediation in primary health care was initiated in Romania during a vaccination project in 1997 when large numbers of Roma refused vaccination due to complex reasons [16]. Since then, health mediators have worked in a number of European health projects, most of them during the Decade of Roma Inclusion [17]. The inclusion of health mediators in the Model Programme was justified based on two decades of experience with Roma communites [18]. Health mediators were recruited from the local communities and employed part-time with no requirement for professional or vocational training (Fig. 1). They were recruited by public advertisement as prescribed by law and by locally distributed leaflets facilitated by the participating GPs and practice nurses. All health mediators were required to reside in the local community; preference was given to those applicants who identified with or had experience working with the largest minority (Roma) population of the regions. Their major task was to bridge the gap between general practitioners and their socioeconomically vulnerable clients by ensuring individualized support for the latter, counterbalancing the potential increase of health inequalities inherent in the population approach of prevention uncovered by Frohlich and Potvin [19]. The Programme planned to employ 12 mediators per GP cluster or altogether 48 persons (most of them middle-age women living in the local communities and identifying at the time of employment as Roma) on part-time contracts equivalent to 20 work hours per week. Work allocation and supervision of health mediators was the responsibility of the supervisor of all non-medical personnel of the GP cluster, the so-called public health coordinator (a public health professional) who reported to the head of the GP cluster (one of the GPs elected by all GPs from themselves). --- Training for health mediators Vocational training of 800 h in assistant nursing was provided in the first year of employment to all those health mediators who had the appropriate educational qualification to enter training and who did not yet have any health-related vocational qualification. 3-day training in health mediation was provided to all health mediators in the first and third years of employment in the Programme. All expenses related to both vocational and mediator trainings were fully paid for by the Programme, and both were completed during work hours. A number of short courses of continuing education were also developed for health mediators and completed during work hours. --- Work tasks of health mediators Health mediators acted as facilitators between GP cluster workers and the serviced populations with the aim of increasing the access and uptake of health services among vulnerable groups (characterized by low income, primary education only, minority status or a combination of these) who have been known to be reluctant to attend such services [5,15]. They participated in the organization and operation of various preventive services as specified by the public health coordinator (their supervisor) and the GP, being specifically responsible for increasing attendance at the health status assessment. Health mediators received a list of those who did not show up at the assessment in spite of receiving a written letter of invitation, and they had to make house visits to persuade non-attendees to participate. They carried out the majority of fieldwork related to community-based events at which they also participated, manning various posts during such events. Health mediators were also involved in various health education activities facilitated by training, relevant material and printed leaflets for distribution. Mediators also had administrative tasks of reporting their work, including participation at the monthly meetings of the GP cluster. --- Methods Our aim was to assess the workload of health mediators and to estimate their contribution to the implementation of health status assessment and community health promoting programmes in the group practices of the Model Programme. --- Data collection and analysis The framework of the Programme along with major indicators was specified in a bilateral agreement between the Swiss and Hungarian Governments in 2012. The percent of Roma patients accessing services had been specified as one of the major indicators. Ethnic identity was reported by patients themselves by responding to two questions taken from the 2011 Census [20] in the self-filled questionnaire of the health status assessment (HSA). The questionnaire of the HSA used items and scales from the Hungarian version of the European Health Interview Survey 2009, Hungarostudy 2013, and other validated instruments in Hungarian [8,[21][22][23]. The detailed development of the Model Programme (including all indicators) was carried out by a Consortium of experts delegated by nine bodies including four national health institutions and five leading universities. The programme was managed by an expert team affiliated to the national institution responsible for health care management. There had been institutional and personnel changes in the management of the Programme during 4 years of implementation (2013-2017), therefore the names of the institutes are not reported. All administrative data, including work hours and activities of all workers of the Programme, as well as monitoring of attendance of all individual, group and community services by clients was mandatorily reported on a monthly basis according to the Programme Implementation Manual (398 pages and 22 Annexes) written by the Management and approved by the Consortium. Health mediators logged their work hours and activities daily on standard forms and reported them monthly to the public health coordinator as prescribed in the Manual (along with all other employees of the GP clusters). Heads of the GP clusters were responsible for data collection and reporting in their clusters. All data from the GP clusters were sent to Management at headquarters where data processing was carried out. Data analysed in this paper were provided by Management in aggregated electronic format so as to prevent individual identification of any worker in any GP cluster. --- Work performance of health mediators Altogether 48 part-time positions for health mediators (12 per GP cluster) had been planned during the implementation phase. However, these entry-level half-time positions provided quite low wages that led to many of the mediators leaving their jobs if they found full-time employment elsewhere. Remaining mediators repeatedly requested their work hours to be increased to that of full-time and some GP clusters did request changing the part-time contracts to that of full time (granted by the Management). In order to make the workloads among GP clusters directly comparable and to account for changes in contracts and length of employment, work time for all health mediators was calculated in work hours based on the number of positions and duration of employment between July 2013 and January 2017. Potential work hours were calculated by the number of available part-time positions; actual work hours were calculated based on the number of filled positions and by number of work hours per week per person taking into account the type of contract (part-time or full-time). --- Data on new services of GP clusters All data on service uptake and attendance of programmes used in the analysis were made available by the Management of the Programme that was responsible for data collection throughout the Programme. Descriptive statistics and Pearson correlations were calculated in MS Excel 2016. --- Results --- Job fulfillment/vacancy As Table 1 reveals, health mediators spent most of their time recruiting for and helping with health status assessment. This activity was exclusively organized and carried out by non-medical personnel of the clusters, similar to community health promoting events, hence the noninvolvement of doctors. Regarding health status assessment, health mediators had to visit and individually engage with patients who did not show up at the health status assessment after receiving written invitation. Therefore, work minutes per health mediator per patient in each cluster was calculated as independent variable to account for the different numbers of patients in the clusters for Fig. 2. 80% of clients listed with and invited by the GPs in the Programme did attend the health status assessment. This service is provided by other GPs in Hungary only by the patient's request, so attendance of this service could only be compared to participation at other, invitation-based national screening programmes of the country. Attendance of the health status assessment in the Model Programme was 1.3-1.7 times higher than that of national screening programmes. A correlation analysis between the number of mediator work minutes per client and the participation rate at health status assessment by GP clusters showed a strong positive linear correlation (r = 0.549) that was not significant due to the low number of datapoints (Fig. 2). Part of the mediators' work hours was dedicated to organizing community health promoting events (data on these events are restricted to one year between October 2014 and September 2015), not requiring individual engagement with patients, but rather, organizational and logistic activities. Since this work was not dependent on the number of patients in the GP clusters, the total number of work minutes of health mediators was calculated as independent variable for Fig. 3. These events were altogether attended by 74% of all persons listed with the 4 GP clusters (Fig. 3). Pearson's correlation coefficient was high (r = 0.713) though not significant due to the low number of datapoints for the positive association between the total number of health mediator work hours and the total number of participants at community health promoting events in the examined period in the four GP clusters. Though the number of datapoints (each representing one GP cluster) are insufficient to support significance, the relationship of work performance (work minutes) of health mediators to the number of participants can be seen both in terms of the health status assessment (Fig. 2.) and health promoting events (Fig. 3). As part of the programme evaluation, a patient attitude survey in a representative sample of 1022 persons was conducted in 2016 of whom 83.6% had attended health assessment. 20% of all, and 40% of Roma respondents of this survey mentioned that they attended health assessment on the recommendation of health mediators. As new additions of the primary care workforce, health mediators had to find their niche in the group practices that took time and effort as reflected by the relatively high proportion of mediators who left the Programme during its examined 43 months (45%, Table 1). However, the proportion of job leavers was down to 20% between January 2016 and January 2017 reflecting increased integration. Forty-eight health mediators in half-time employment entered the Programme at its start. The turnover was quite high; several new mediators were hired during 4 years. The employment status of health mediators was changed to that of full-time position if requested by the Head GPs of the clusters from the Management. By January 2017, only 66% of the mediator positions were filled (32 out of 48) but 38% of the mediators had worked full-time, reflecting their useful contribution to the services of the GP clusters. --- Discussion Our paper gives account of the contribution of health mediators as members of multidisciplinary primary health care teams that were created in Hungary in the framework of the so-called Primary Care Model Programme from 2013. The Model Programme was the first in the country to create multidisciplinary teams in primary care, necessitated by a number of problems related to single-handed practices such as lack of preventive services, inequalities in access to primary care services, and uneven distribution and shortage of general practitioners, among others [9]. Their work was evaluated in relation to two new services that are not provided by single-handed GP practices in the country. Health assessment is carried out by GPs only if it is requested by the patient, so attendance of this service in the Model Programme can be compared to participation at other, invitation-based national screening programmes in the country. Breast cancer screening has been carried out by invitation among 45-65 year-old women every 2 years; its national rate of attendance ranged from 45% in 2015 [24] to 61% in 2002-2003 [25]. Cervical screening is requested from gynecologists by 50 to 60% of women aged 25 to 65 years. A national programme of cervical screening inviting women to attend since 2003 did not significantly increase the proportion of those who had been screened by 2010 [26]. Attendance of the health status assessment in the Model Programme was 1.3-1.7 times higher than that of these national screening programmes. Correlation analysis between the relevant indicators of mediator work time and participation at health status assessment and community health promoting events by GP clusters showed positive correlations, reflecting the substantial contribution of health mediators in the uptake of these services. --- Strengths and limitations Indicators of traditional and new services of GP clusters had been collected during a relatively long time-period (43 months). However, separating the contribution of health mediators from other workers of the GP clusters is limited by the fact that they participated in services in which other workers had also been involved so their contribution can only be approximated. The quantification of the share of workers in primary care outcomes is possible only for those services that are provided by particular workers independently [27]. Access to the new services by Roma patients was definitively improved due to the tenacity and persistence of health mediators, but the proportion of Roma patients is based on self-identification during service uptake but not in the database of GPs since the latter is not allowed in the country. Since the proportion of Roma in the patient attitude survey was almost three times higher than the proportion of Roma in health assessment (20% vs 7.2%), selection bias cannot be excluded, and probably resulted in a slight overestimation of the impact of health mediators on participation. However, this does not call into question the substantial motivational effect of health mediators on the participation of ethnic minority patients at health assessment. --- Health mediators as team members in primary care The institutionalization and professionalization of health mediation had been recommended on the basis of the accumulated experiences during the Decade of Roma Inclusion [17]. The Hungarian model programme described above is the first in which these recommendations were fully implemented. Health mediators were recruited from the serviced communities, received vocational training, and became employees and equivalent members of GP group practices who facilitated the access to and uptake of services among Roma minority groups, though at the expense of putting in high numbers of work hours the sustainability of which remains to be seen. Moreover, as the unprecedentedly high participation rate in the health status assessment allows us to surmise, health mediators likely facilitated access to primary care services for many members of the community, not only to those with Roma identity. In this respect, health mediators shifted towards the role that community health workers fulfill in primary care in many countries outside of Europe [13,14,28]. It is of interest to note that though the WHO policy guideline on community health worker programmes was published in 2018, the system support of health mediators in the Hungarian Model Programme established in 2013 partially or fully met all 15 recommendations of the WHO guideline reflecting conceptual overlap between the two types of nonprofessional workers. The composition and changes of the health mediator workforce will be described in a separate paper. The Programme had planned to employ altogether 48 persons in 4 GP clusters in half-time jobs. They were able to bridge the gap between general practitioners and their vulnerable clients attested by data on attendance of various primary care services. Additionally, twice as many Roma patients mentioned health mediators as the motivators for accessing services, underlining the importance of attending to vulnerable persons [19]. The type of work carried out by health mediators required personal contact with patients in their homes so a considerable part of the work hours of health mediators was spent on travelling on foot since most of the GPs worked in villages with no mass transportation. (Bikes were provided for mediators only in the last year of the Programme.) Based on experiences of this Programme, full-time (instead of part time) employment of health mediators can be justified along with the provision of some means of transportation in primary care to which sizable disadvantaged groups belong. --- The future of primary health care There has been a continued debate in the past decades whether single-handed practices can remain long-term alternatives to group practices since the latter have lower structural costs, more ancillary staff, tend to provide a wider range of services, and their GPs are much less at risk of becoming professionally isolatedall pointing to higher quality of care [29]. There have been conflicting accounts whether single-handed practices provide lower quality of care compared to group practices [30,31], but relevant reports agree that single-handed practices tend to operate in deprived areas serving clients with higher needs [32]. The special needs of populations in low socioconomic strata were also highlighted in Hungary where the rate of non-performed preventive services was found to be highest among those with no more than primary education [6]. The future of general practice as spelled out by the World Health Organization [33] and the Royal College of General Practitioners [34] lies in multidisciplinary teams that provide integrated, comprehensive, cost-effective and patient-centered care in a way that also contributes to the reduction of health inequalities at the community level. These multidisciplinary teams must expand their workforce in order to provide a wide range of services to the local communities that are easily accessed and taken up by clients from all strata of society. Health mediatorsexpanding their work from minority persons to that of all vulnerable patients of group practicescan not only ease the workload of GPs, a key issue of primary care [35], but can also increase patient satisfaction by bridging the physical and societal distance between health professionals and their disadvantaged patients. --- Conclusions Health mediators as facilitators of the access and uptake of primary health services among Roma minority groups had been employed as support workers of primary care practices in a Model Programme that established group practices (GP clusters) in Hungary in 2013. The contribution of health mediators during 43 months of the Programme was reflected by the high participation rate (80%) of all clients registered with GPs at health status assessment that exceeded participation rates of other national screening programmes; as well as by the correlation of mediator work time and participation rates at health status assessments and at community health events. Health mediators recruited from the serviced communities can be valuable members of multidisciplinary primary healthcare teams, especially in deprived areas. --- Availability of data and materials The datasets generated and/or analysed during the current study are not publicly available due to containing personal and special data the availability and use of which is regulated by law (2011. évi CXII. törvény az információs önrendelkezési jogról és az információszabadságról). Data collected in the framework of the Programme is stored and managed by the National Public Health Institute of Hungary and available on reasonable request from the director of the Institute. --- Authors' contributions KK contributed to the conceptualization and study design, performed the literature review, analysed data, drafted the manuscript and approved its final version. CK performed the literature review, performed data collection and management, analysed data, and drafted the manuscript. MP contributed to study design, performed data collection and management, analysed data and approved the final manuscript. GF contributed to study design, performed data collection and management, and approved the final manuscript. JS contributed to the conceptualization and study design, analysed data and approved the final manuscript. KB contributed to data collection and management, and approved the final manuscript. RÁ contributed to the conceptualization of the Model Programme and the study as well, contributed to study design, evaluated data analysis and approved the final manuscript. The final manuscript was read and approved by all authors. --- Funding The Model Programme had been implemented in the framework of the Swiss Contribution Programme SH/8/1. The project was supported by a grant from Switzerland through the Swiss Contribution. K. Kósa, J. Sándor, K. Bíró, and R. Ádány were supported during the writing of the manuscript by the GINOP-2.3.2-15-2016-00005 project financed by the European Union under the European Social Fund and European Regional Development Fund. The funders have had no influence on study design, data collection and analyses, interpretation of results, writing of the manuscript or in the decision to submit it for publication. --- Ethics approval and consent to participate The Model Programme had been implemented in the framework of the Swiss Contribution Programme SH/8/1 that specified the indicators for evaluation. Indicators monitored in primary health care are specified in the Hungarian Health Care Act of 1997 (1997. évi CLIV. törvény az egészségügyről). The Programme was created on the basis of the Framework Agreement between Switzerland and Hungary (declared by 348/2007. (XII. 20.)) and signed on 20 December 2007. Ethical approval for data collection for research purposes in the Programme was issued by the Scientific and Research Ethics Committee of the Medical Research Council of Hungary (ETT-TUKEB) (16676-3/2016/EKU (0361-16). The protocol of the health status assessment was approved by the Scientific and Research Ethics Committee of the Medical Research Council of Hungary (ETT-TUKEB) (52119-2/2015 EKU). All subjects signed an informed consent form, and the anonymity of personal information was guaranteed during data analysis. --- Consent for publication Not applicable. --- Competing interests The authors declare that they have no competing interests. --- Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Internalised homonegativity predicts HIV-associated risk behavior in European men who have sex with men in a 38-country cross-sectional study: some public health implications of homophobia

et al. Internalised homonegativity predicts HIV-associated risk behavior in European men who have sex with men in a 38-country cross-sectional study: some public health implications of homophobia.

INTRODUCTION Disease has classically been associated with disadvantage, with lower socioeconomic and occupational status being associated with chronic disease. 1 Infectious disease has also been disproportionately associated with disadvantage, along with access to health services (expressed by Hart's inverse care law that those who are most in need of healthcare have the lowest access to it 2 ). These patterns of disadvantage extend to targets of discrimination, including women and racial and ethnic minorities. 3 More recently, structural inequalities such as income distribution have been implicated in poor health outcomes and access. 4 Discrimination is largely based on obvious stigmatising characteristics such as race or appearance, 5 and little attention has been paid to less visible or invisible stigmatising statuses, such as homosexuality and homosexual behaviour. As Ross 6 found, there is no close link between experienced discriminatory acts and expectation of discrimination, because those homosexual men who anticipate the worst outcomes remain the most hidden and are thus less likely to experience discrimination. Poor mental health has been hypothesised 7 to result from internalisation of negative attitudes and assumptions about homosexual people, commonly described as 'homophobia'. Internalised homonegativity (IH), internalisation of negative attitudes and assumptions about homosexual people by homosexuals themselves lead to feelings of guilt, inferiority and lack of self-worth. Meyer 7 summarises the evidence and places IH into the conceptual framework of minority stress, in which prejudice, stigma and discrimination create a hostile and stressful social environment that may cause mental health problems. Recent data indicate that IH is directly associated with mental health outcomes, 8 with avoidance of HIV testing and identification as bisexual or straight in men who have sex with men (MSM) (but not HIV-risk behaviours when sexual identification and race/ethnicity were controlled for), 9 and indirectly through the mediators of discomfort with discussing HIV status and condom use. 10 Ryan et al 11 found that family rejection of gay and lesbian adolescents was associated with an 8.4 times higher likelihood of attempting suicide, 5.9 times higher likelihood of depression, 3.4 times higher levels of using illegal drugs and a 3.4 times higher risk of engaging in unprotected intercourse compared with teens who reported no or low levels of family rejection. A recent review of US studies 12 concluded that IH has minimal effect on risk behaviour, although that conclusion has been criticised for being based largely on US data and for assuming a linear relationship between the two variables. 13 However, Ross et al 14 have demonstrated that IH predicts sexual risk behaviour in gay men in Uganda, where homosexuality is heavily stigmatised. The data suggest that IH may vary significantly from country to country as a function of levels of discrimination at legal and structural levels as well as individual experience: that is, ambient homophobia is a major determinant of IH. European data from over a decade ago indicate that general population homonegativity is negatively associated with religion and immigration, and positively associated with urbanisation and economic development. 15 16 The European MSM Internet Survey (EMIS) is a European study with a unique opportunity to research IH in a range of political and social settings. EMIS 17 in 38 European countries is the first pan-European survey of MSM by European researchers. It provides an opportunity to examine IH and both its structural predictors and its associations with HIV risk behaviour in a large and geographically diverse sample, with sufficient countries to enable analysis by countrylevel (macro) as well as local-level (meso) and individual-level (micro) variables. A short form of Ross and Rosser's IH scale has recently been developed with culturally stable items 18 19 to make this possible. We report on an analysis of IH levels by country structural variables including legal discrimination and income inequality, and levels of experienced discrimination and, in turn, its associations with HIV testing and preventive sexual behaviour. We hypothesise that IH will be influenced by legal climate regarding LGB (lesbian, gay and bisexual) variables and possibly other structural issues, and that IH will itself be associated with MSM's visibility and social context and HIV-related prevention behaviours including HIV testing and condom use. --- METHODS The methods of the EMIS have been described in detail elsewhere 17 . In brief, EMIS is a joint project of academic, governmental and non-governmental partners from 38 countries in Europe (EU and neighbouring countries) to simultaneously run an online survey in 25 different languages during summer 2010. EMIS was designed to inform the planning of prevention interventions for MSM by identifying prevention needs commonly unmet across MSM ( priority aims), as well as subgroups of MSM who have many prevention needs poorly met ( priority target groups). --- Promotion and recruitment The Internet-based self-completion survey study was promoted online and offline through various media for gay, bisexual and other MSM under the slogan 'Be part of something huge!' More than 235 local, national and international lesbian-gay-bisexual transgender websites undertook online recruitment, and many of these organisations also promoted the survey offline via posters, recruitment cards and face-to-face interaction. By visiting a promotion website, men were exposed to banner advertisements inviting them to participate in the study. PlanetRomeo, Manhunt, Qruiser, Qguys and Gaydar sent individual messages to their users inviting them to complete the survey. By clicking on the banner or the study link, potential respondents were directed to a survey 'landing page' and asked to choose 1 of the 25 languages for completion. Once they had chosen a language, the first page described the study, including its purpose, its voluntary and anonymous nature, and gave contact information on how to contact the researchers. Men were eligible to participate if they were living in Europe, at or over the age of homosexual consent in the country they lived in, sexually attracted to men and/or having sex with men. They also needed to indicate that they understood the nature and purpose of the study and consented to take part. The survey was physically located on servers owned and administered by the company Demographix.com, whose staff was responsible for testing it across different computer platforms/operating systems and with different web browsers, and managing the technical aspects including back-ups and data delivery to the researchers. The data were protected with a 128-bit SSL encryption server not accessible to the public. We neither collected the IP address of participants' computer nor installed any cookies on it. The survey was available online between 4 June 2010 and 31 August 2010. EMIS could be completed in any of the 25 languages and the questions were identical in each language version. It took 21 min to complete the survey on average. No study recompense was offered. All study procedures were approved by the Research Ethics Committee of the University of Portsmouth, UK (REC 08/09:21). --- Data preparation and analysis At the close of fieldwork, there were 184 469 cases in the consolidated file. Partially completed surveys (moving away from the web page before pressing 'submit') were not captured. When downloaded three cases were lost because of data corruption, and 2427 cases were removed from the dataset because they gave no country of residence or a country of residence outside the study area. A further 544 cases were removed on the basis that they were women, or men with no homosexual desire or experience, gave no age or were under 13 or over 89 years old. This left a total of 181 495 cases meeting the qualifying criteria. Data from 291 cases from European countries and states that did not reach 100 qualifying cases were removed as were 6995 cases with more than one inconsistency, defined as answers to two questions which could not both be valid. Inconsistent data could be submitted by moving backwards and forwards in the survey and changing previously given answers. It could also be submitted simply by supplying inconsistent answers across one or more questions. Given the length and complexity of the survey, we allowed respondents to have one inconsistency in their given answers; but we excluded all cases with more than one inconsistency, suggestive of random answers being given, which is to be expected in a low-threshold questionnaire like EMIS. This left an analytical sample of 174 209 MSM from 38 European countries. 17 MEASURES AND ANALYSES Measures IH was scored according to the criteria described by Ross et al 18 and Smolenski et al 19 as an additive scale of 7 items, ranging from 0 to 6 (Cronbach's α=0.70). Education was measured using the six levels of the International Standardised Classification of Educational Degrees (ISCED), corresponding to the educational system of each country. 'Outness'-defined as the proportion of people one is out to as gay or bisexual (family, friends, work or study colleagues)-was measured on a 5-point Likert scale from 'all or almost all' to 'none'. The proportion of male friends who are also attracted to men was measured on a 6-point Likert scale from 'almost all of them' to 'almost none of them' and 'I don't have any male friends'. Having ever had an HIV test was a binary (yes/no). We compared this binary variable with the extended variable of how long the respondent had had an HIV test (24 h, 7 days, 1 month, 6 months, 12 months, 5 years, more than 5 years ago) and found that the two measures correlated 0.88. We thus decided to use the binary measure in analyses, particularly given the nonlinear nature of the time measure. Perceived control over sexual risk-taking was measured on a 5-point Likert scale anchored by 'strongly agree' and 'strongly disagree' with the statement "The sex I have is always as safe as I want it to be." The relative frequency of condom use with non-steady partners was measured as "In the last 12 months, how often were condoms used when you had anal intercourse with non-steady male partners?" (6-point Likert scale 'all or almost all' to 'none'). The number of non-steady anal intercourse partners was asked as 'How many non-steady partners did you have anal intercourse with in the last 12 months?' (number). Sexual diversity of practice: EMIS asked for the recency of a range of sexual practices with non-steady partners. Although this set was originally designed to reflect certain transmission routes for HIV and sexually transmitted infections, it can serve as a proxy for diversity of sexual practices, even if sexual practices with steady partners are not included. Sexual diversity was the sum of the nine different types of sexual behaviours with non-steady partners reported in the past 6 months (mutual masturbation, oral insertive, oral receptive, anal insertive, anal receptive, rimming, being rimmed and insertive and receptive 'fist-fucking'. These were re-coded as binaries to reflect engaging in them or not in the past 6 months and summed to form a measure of the relative diversity of the respondents' sexual repertoires (Cronbach's α=0.77). Size of settlement was measured on a 5-point scale from a 'a very big city or town (a million or more people)', to 'a village/the countryside (less than 10 000 people)'. Legal climate was measured by scoring the presence of the six legislative measures of LGB status (legal discrimination) listed by Wikipedia, 20 with a high score of six for the presence of all legislative protections (homosexual acts are legal, recognition of same-sex relationships, same-sex marriage, same-sex adoption, gays serve in the military, LGB antidiscrimination laws). The Gini coefficient of income inequality in a country was extracted from the UN Human Development Report coefficient for all countries (2008) with the exceptions of Cyprus, Malta, Luxembourg and Serbia, which were derived from an identical calculation method using the CIA Gini score (2008). The Gini coefficient ranges from 0 (all people in a country have equal income) to 1.0 (one person has all the income). It serves as a general economic measure of distribution of wealth. --- Analyses Analyses, unless otherwise indicated, were carried out using SPSS V. 19 and V.20 on the 38-country dataset (table 1). Cluster analysis of the 38 countries was carried out using SPSS V.19: a two-step procedure using Euclidian distances was employed, entering three variables: country LGB legal discrimination scores, proportion of MSM reporting verbal abuse and proportion of MSM reporting physical violence because someone knew or presumed they were attracted to men. Three country clusters emerged including 9, 17 and 12 countries, respectively, with good fit (Silhouette coefficient of cohesion and separation=0.65; figure 1). Bivariate analyses were carried out using χ 2 with Cramer's Φ as a measure of effect size for ordinal data, and t test (using Cohen's D as a measure of effect size) (table 2). Effect size statistic for univariable analysis of variance (ANOVA) for interval or ratio level data was η 2 . Because of the large size of the subsample with valid IH scores (N=144 177), almost all analyses were highly statistically significant, so p levels were not reported. Means of IH were graphed against selected structural and behavioural variables in figure 2 2). IH was closely related to the three discrimination-based clusters, with the highest IH in the 'conservative' countries and the lowest IH in the 'liberal' cluster of countries. Using the measures of LGB legal climate (the strongest predictor), the Gini coefficient and the size of place of residence all predicted IH (table 3, figures 2 and 3). IH, in turn, was associated with outness and age. The HIV-associated behaviour most closely associated with IH were (1) ever being tested for HIV (mediated by outness) and (2) a perception of having no control over sexual risk-taking. Sexual diversity had a smaller impact. HIV testing was predicted, following outness as the major component, by the proportion of gay friends, highest educational attainment and age. A second linear regression limited to the demographics, HIV testing, 'outness' and perceived control over sexual risk-taking onto IH indicated that those most closely associated with IH were lack of control over sexual risk-taking and not being tested for HIV. Bivariate relationships between IH and country cluster, Gini coefficient septiles and LGB legal climate (figure 2) show a relationship between these variables and IH. Sexual diversity illustrates (figure 2) an increase in sexual diversity with decreasing IH and a more limited range of sexual activity with higher IH. Table 2 illustrates bivariate associations with strong effect sizes predicting ever having had an HIV test, specifically being 'out' and the proportion of MSM friends, followed by education and the size of settlement. ANOVA of IH score by the relative frequency of condom use with non-steady partners, with covariates, the number of non-steady partners that they had unprotected anal intercourse within the past year and perceived control over sexual risk-taking, demonstrated a small-to-moderate effect size (η 2 =0.03). An accelerating relationship between IH and the relative frequency of condom use (covariates' perceived control over sexual risk and the number of casual partners in the past year) with non-steady male partners was apparent (figure 2). The strong relationship of perceived control over sexual risk-taking (figure 2) with condom use led to an additional analysis of the predictors of this perceived control (table 4). The highest stepwise predictors were the number of non-steady partners one had anal intercourse within the past 12 months, IH, Gini coefficient and LGB legal climate. --- DISCUSSION While these data represent 144 177 MSM in 38 countries, their collection via the Internet constitutes a non-random sample. Previous Swedish and UK data comparing Internet sexual data collection with questionnaire data from a large national random sample from a sexuality study in the same country 21 22 23 indicate that general Internet samples tend to be somewhat younger, more likely to be single, better educated and urban. Internet samples of MSM may be more bisexually identified, worse educated and rural compared with traditional gay venue questionnaire-based samples in Sweden. The Swedish data indicate the known biases for Internet samples by comparing them with a national 'gold standard' study. The EMIS data are likely to be biased towards those who are better educated and Internet-literate and probably more familiar with the gay subculture. This sampling bias will be more substantial in Eastern European countries where household Internet access is less common and a smaller proportion of the whole MSM population participated in EMIS. On the other hand, the Law of Large Numbers would suggest that for the larger country samples, range 3). While the effect size of a β<0.1 is minor, generally, the greater the distance of a structural variable from an individual, the more difficult it is to achieve a large effect size. Paths from social climate variables to IH and behaviour are measurable and quantifiable, given that this study has the power to detect theoretically important differences from the 'background radiation' of structural and social climate factors at a country level. Although the study appears to be overpowered at the individual data level, at the country variable level, the n is only 38. Figure 2 graphically indicates the relationships between IH and both structural and behavioural variables. --- HIV testing and IH Higher IH is also associated with decreased levels of HIV test-taking at any time, as mediated by 'outness' (but not directly), and denying that their sexual conduct is always as safe as the respondents want it to be ( perceived control over sexual risk-taking). Thus, higher IH appears to both discourage HIV testing (which may be considered a marker of acknowledgement of stigmatised status) and also to reduce the ability to have safe sex despite the intention to do so. Diversity of sexual behaviour (figure 2) also appears to be restricted by IH, with a lower sexual repertoire, possibly because of the interactions limited by time, locale, anonymity or peer modeling. --- Condom use and IH Condom use for anal intercourse (controlling for the number of non-steady sexual partners for anal sex, and the perceived control over sexual risk-taking) revealed a relationship of lower IH with increasing condom use (figure 2). This suggests that IH is associated with risky sexual behaviour generally and condom use specifically. This unexpected implication of the degree of control over sexual risk-taking bore further investigation. --- Paths between structural variables, IH and HIV risks These data indicate relationships between the levels of legal and experienced discrimination and IH and, in turn, between IH and both outness and gay peer contact and HIV risk behaviours. HIV-risk behaviours associated with high IH include lower levels of HIV testing (not knowing HIV status and/or receiving treatment being a risk), lower levels of perceived control over safe sex and lower levels of condom use for anal sex when this safe sex volition and the partner numbers are controlled for. The relationship of the Gini coefficient and IH is interesting, and here, the Gini coefficient probably represents a level of attitude to equality beyond the purely economic (figure 2) and is consistent with the association found between sexuality-related attitudes and human development indices 15 16 24 25 Impact of homophobic climate and IH and potential intervention levels These data suggest, however, that IH may have pervasive effects on sexual behaviour related to HIV prevention through the association of a homonegative legal and social climate with higher levels of risk and lower levels of preventive behaviours, at both the personal and probably policy levels, although more research is required to elucidate these. Hatzenbuehler et al 26 note that statelevel protective policies modify the effect of sexual orientation on mental health disorders, and it is logical that one of the mechanisms for this may be through the reduction of institutional discrimination, hate crimes, homonegativity and by providing interventions to reduce internalised homonegativity. The public health implications of these data are fourfold. First, it is clear that interventions must incorporate changes in the legal and policy climate (and perhaps religious climate) with regard to MSM. Second, such climate changes need to be communicated to professionals (including healthcare workers) who are at the government or professional interface with MSM clients, possibly with appropriate in-service training. Third, structural interventions should translate into the provision of specific services or outreach to MSM. Fourth, anti-IH measures for MSM might include individual-level opportunities on the Internet anonymously targeting stigmatised sexual minorities. These could be based on short, easily read informational modules, reduction of pathological stereotypes through pride-enhancing modules, role-model stories and approaches to respond to the negative 'voice within' or distancing strategies. The success in reaching some 180 000 MSM via the Internet in three months, Europe-wide, in 38 countries and 25 languages, in this study indicates the potential of this medium and for region-wide rather than countrywide approaches. While effect sizes for some structural components are small, Europe has a population of over 802 million and if we assume conservatively that 2% of men aged 15-65 are MSM, the potential public impact on 5.35 million MSM is considerable. Legislative and legal climate changes and human rights protections are not expensive in monetary terms compared with classic medical screening and treatment. Staff and public servant training or re-training costs, however, may be necessary. As far as we are aware, no study in Europe has previously looked at HIV-preventive behaviour and homonegativity. From these pan-European data, homonegative stigma can be clearly linked through IH to increased HIV risk in MSM at both the population and personal levels. Discrimination is bad law, bad policy, bad psychology and bad medicine: reducing homonegative policy and interactions at the legal and social levels will have a positive impact on the health as well as human rights of MSM populations. --- Author affiliations 1 School of Public Health, University of Texas, Houston, Texas, USA 2 Faculty of Health and Society, Malmö University, Sweden 3 Norwegian Knowledge Center for the Health Services, Oslo, Norway 4 London School of Hygiene & Tropical Medicine, London, UK 5 University College Maastricht, Maastricht University, Maastricht, The Netherlands 6 Regional Center for Health Promotion, Verona, Italy Competing interests None. --- Ethics approval University of Portsmouth IRB. Provenance and peer review Not commissioned; externally peer reviewed. Data sharing statement No additional data are available.

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The role of social buffering on chronic disruptions in quality of care: evidence from caregiver-based interventions in foster children

There is growing evidence that social support can buffer the physiological stress response, specifically cortisol reactivity. We use a developmental framework to review the importance of social buffering in early childhood, a period of heightened plasticity for programming of the hypothalamic-pituitary-adrenal (HPA) axis. The social environment, in which parents play the largest role in early life, is a critical agent in the developmental trajectory of the HPA axis. A prevailing model of social buffering primarily focuses on the role of social support in the context of acute stressors and cortisol response. This review expands this model to provide evidence of the mechanism of social buffering, or lack thereof, across periods of chronic stress by applying the social buffer model to children involved in the child welfare system. We also highlight current interventions that capitalize on the mechanism of social buffering to modify HPA axis functioning across childhood. Last, we synthesize our findings using the social buffering framework to inform future targeted interventions.

Overview Early life is a critical period in the programming of the hypothalamic-pituitary-adrenal (HPA) axis, which is essential for maintaining homeostatic balance in the face of stressors (Lupien, McEwen, Gunnar, & Heim, 2009). The social environment plays a crucial role in HPA axis development during this period of heightened plasticity (Lupien et al., 2009). In infancy and childhood, the social environment typically comprises a primary caregiver who is the key external regulator of HPA axis activity. "Social buffering" refers to the ability of social factors (i.e., the primary caregiver) to regulate or buffer (i.e., dampen) the physiological response to a stressor. When a caregiver's ability to serve as a social buffer is compromised, child HPA axis development is affected (Hostinar, Sullivan, & Gunnar, 2014). Research about social buffering may explicate effects of the early caregiving environment on typical and atypical development of the HPA axis; however, much of the work to date has focused on the effect of social support on cortisol reactivity to an acute stressor (Hostinar et al., 2014). This work has greatly increased our understanding of the mechanistic specificity by which caregiver support buffers against stressful early experiences but is also limited in its ability to model the full range of adverse experiences to which children are exposed. In addition to highlighting the effects of acute stressors, research has also shown that the production of basal cortisol is dampened by social support (Hostinar et al., 2014). This review expands the current social buffering framework to incorporate evidence of the mechanistic role of social support in diurnal cortisol patterning in environments of chronic stress. Investigations of stress regulation and the effects of social buffering across time enable us to characterize diurnal cortisol patterning in the home environment in relation to ongoing parenting behaviors. This review focuses on the influence of caregiver support, and lack thereof, on diurnal cortisol patterning for young children in foster care, many of whom experience early and ongoing adversity (see Figure 1). The goals of this review are to (a) review the literature about diurnal cortisol patterning in foster children, with an emphasis on the common experience of neglect (i.e., lack of a social buffer); (b) review evidence that caregiver-based interventions that target responsive parenting strategies affect HPA axis functioning in foster children; and (c) synthesize our findings using the social buffering framework to inform future targeted interventions. --- Caregiver quality and HPA axis patterning In addition to providing a social safety net for maltreated children whose birth parents are unable to provide a safe environment, from a scientific perspective, foster care also represents a valuable "natural experiment" for examining the effects of limited social buffering on children's HPA axis development. Although foster children experience a range of chronic stress, neglect is the hallmark experience leading to out-of-home placement: In a 2013 report, neglect was the most commonly reported type of maltreatment (79.5%; US DHHS, 2015). "Neglect" refers to a caregiver's failure to provide in terms of a child's physical, medical, emotional, and/or supervisory needs (US DHHS, 2015). Within the social-buffering framework, neglect can be conceptualized as the lack of, or absence of, a reliable social buffer during a developmental period when external regulation by caregivers is critical, with consequences for the typical development of the HPA axis and the health and behavioral outcomes influenced by HPA axis activity. A sizable literature demonstrates the impact of early-life neglect on HPA axis functioning in foster children. Though this literature clearly suggests that experiences of neglect affect the HPA axis, the specific nature of this effect varies. The most commonly documented effect of neglect on HPA axis functioning is a blunting of diurnal cortisol (sometimes referred to as hypocortisolism; Badanes, Watamura, & Hankin, 2011;Gunnar & Vazquez, 2001). When the association between neglect and hypocortisolism was first observed, findings were inconsistent with the prevailing consensus in the field that experiences of stress lead to elevated cortisol (Gunnar & Vazquez, 2001). It is important to note that hypocortisolism does not confer the same benefits as blunted cortisol reactivity following successful social buffering. In fact, a peak in diurnal cortisol in the morning has numerous benefits, while a blunted response has been associated with deleterious effects (for full review, see Gunnar & Quevedo, 2007). The consistent finding of hypocortisolism across populations whose early adverse experience largely comprised neglect, such as previously institutionalized children and foster children, challenged the field to consider negative effects on HPA axis functioning specific to the absence of responsive caregiving in addition to effects associated with experiences of abuse (i.e., omission as opposed to commission; Bruce, Gunnar, Pears, & Fisher, 2013;McLaughlin et al., 2015). Research by our group and others has demonstrated a relationship between neglect and hypocortisolism in young foster children. In a sample of preschool-age foster children, our group found the severity of experienced physical neglect to be associated with lower morning cortisol levels (Bruce, Fisher, Pears, & Levine, 2009). In addition, when compared with a low-income community control sample, these foster children were significantly more likely to show low morning cortisol levels (approximately 30% of foster vs. 10% of control children; Bruce et al., 2009). Dozier and colleagues (2006) found foster infants and toddlers, approximately 86% of whom were in care because of neglect, to be more likely to exhibit atypically low or high cortisol patterning at any point across the day than were community controls. Notably, foster children had significantly lower morning cortisol specifically, again pointing to the consistency of the neglect-hypocortisolism relationship. Much of the initial research on cortisol in foster children has been cross-sectional in nature. More recent longitudinal analyses have shown that stability of HPA axis functioning over time may be an additional indicator of early stress effects in foster children. Evidence suggests that diurnal cortisol levels are not only lower but also more variable over time in foster children than in controls (Laurent, Gilliam, Bruce, & Fisher, 2014). A key theoretical link for the extension of the social buffer model from acute stress response contexts to chronic stress response exists in the relationship between acute cortisol reactivity and diurnal cortisol functioning (see Figure 1). Few human studies have directly examined the link between diurnal and acute HPA activity. Recent work from our group that is particularly relevant to our working extension of the social buffering model demonstrates that diurnal cortisol levels measured in a group of children with varying levels of risk (i.e., CWS involvement vs. low income) at regular intervals during the preschool years predicted cortisol response to a laboratory stressor during middle childhood (Laurent, Gilliam, Wright, & Fisher, 2015). Though this study does not specifically address the influence of particular early caregiving environments on the relationship between diurnal cortisol and subsequent response for a stressor, it does serve as a critical first step in the demonstration of this relationship upon which future studies can build to test the moderating effects of early caregiving over time. The exact mechanism through which the social environment affects the HPA axis is challenging to determine because dysfunction could exist at multiple entry points of the system. In humans, measurement of HPA function is typically restricted to cortisol, the end product of HPA activity, due to the level of invasiveness inherent in measuring other products of the system. Animal models have been critical in providing insight into different candidate mechanisms. The HPA axis operates by means of a hormonal cascade: corticotropin-releasing hormone (CRH) is released from the hypothalamus, stimulating the pituitary to release adrenocorticotropin hormone (ACTH), which in turn stimulates the release of cortisol from the adrenal gland. Regulation of the HPA axis is governed by both a direct and indirect negative feedback mechanism; under typical conditions, increased cortisol concentrations directly inhibit the release of CRH from the hypothalamus and ACTH from the anterior pituitary. However, the input into the hypothalamus is multidetermined and includes input from somatosensory, limbic, and higher cortical regions; therefore, glucocorticoid concentrations can indirectly inhibit HPA activity by binding to these glucocorticoid receptor (GR) dense brain structures (Strüber, Strüber, & Roth, 2014). Strüber et al. (2014) propose two pathways through which early life stress can differentially alter cortisol functioning based on quality and quantity of maternal care, suggesting early life stress accompanied by high maternal care results in increased GR expression, whereas early life stress in the absence of high maternal care (e.g., neglect, poor quality care) can result in chronic elevated glucocorticoid concentrations, which in turn leads to a downregulation of GR expression (for full review, see Strüber et al., 2014). Though the measurement of receptor densities requires a level of invasiveness not feasible in humans, the evidence from animal model reviewed above suggests that the differential density of GR expression in brain regions impacting the HPA is a likely candidate mechanism for social environment effects on cortisol functioning. --- Caregiver-based interventions on HPA axis patterning Caregiver-based interventions to improve outcomes for young foster children may function by affecting the quality of the social buffer in the child's life. Strikingly, the interventions reviewed here have also been shown to affect HPA axis functioning. Though these interventions were not explicitly designed to target social buffering, these studies offer examples of opportunities to probe the plasticity of systems such as the HPA axis that we know to be affected by social buffering. In addition, though the specific physiological mechanisms by which these interventions affect HPA functioning remain unclear because of the complexity of this system mentioned previously, these intervention studies demonstrate that the HPA axis is indeed malleable and sensitive to consistent, responsive parenting. Evidence for the effectiveness of these interventions that target consistent, responsive parenting is reviewed in the following paragraphs, with an emphasis on the ways in which this evidence maps onto the social buffering framework. Multidimensional Treatment Foster Care for Preschoolers (MTFC-P) is a multicomponent intervention aimed at improving outcomes for preschool-age foster children by increasing caregivers' positive reinforcement and consistent, nonharsh limit setting (for more details, see Fisher, Ellis, & Chamberlain, 1999). From a social buffering perspective, a mechanism of MTFC-P's action is to increase the experience of reliable and consistent caregiving while in a foster placement and across transitions in caregivers. Results of a randomized, controlled trial showed a preventative impact of the intervention on the HPA axis; specifically, the intervention group did not display the same flattening of diurnal cortisol across time as did the comparison group of children in regular foster care, and the intervention group had cortisol trajectories similar to those of a low-income community control of nonmaltreated children. These findings suggest that MTFC-P protected against this flattening of diurnal cortisol associated with neglect and chronic stress exposure (Fisher, Stoolmiller, Gunnar, & Burraston, 2007). Further investigation of the potential mechanisms underlying this prevention effect revealed the critical influence of caregiver stress, an important correlate of caregiver responsiveness. In particular, foster parents in the MTFC-P condition experienced a sustained decrease in stress associated with child behavior, while the foster parents receiving services as usual experienced an increase during the year-long study period (Fisher & Stoolmiller, 2008). Critically, in families receiving services as usual, higher levels of foster parent stress associated with child problem behavior predicted more blunted cortisol levels in foster children, a relationship not present in the MTFC-P group. From a social buffering perspective, these findings suggest that supportive interventions, such as MTFC-P, may affect HPA axis functioning by bolstering the resources available for foster parents to help them deal with challenging behavior. MTFC-P has also been shown to mitigate the negative effects of a placement change, which can be conceptualized as a shift in the social buffer, on HPA axis functioning by focusing services on providing a consistent caregiving environment in foster care and in permanent placements (Fisher, Van Ryzin, & Gunnar, 2011). Others have focused on foster care interventions in infancy, and as such, have taken an attachment-based approach. A focus on attachment is particularly logical early in life given the critical role of the child-caregiver relationship during this time. The Attachment and Biobehavioral Catch-up (ABC) intervention aims to increase sensitive and responsive parenting following child distress, an aim in line with improving the caregiver's capacity to serve as an effective buffer for the child. Evidence suggests that the ABC intervention is effective at normalizing HPA axis functioning in children with a history of Child Protective Services involvement because of neglect (Bernard, Dozier, Bick, & Gordon, 2015), and that these effects are maintained even 3 years following the intervention (Bernard, Hostinar, & Dozier, 2015). --- Summary and future directions Overall, these studies provide evidence that experiences of chronic adversity across childhood (i.e., neglect and caregiver instability/stress associated with placement in foster care) and diurnal cortisol patterning can be integrated into the current social buffering framework. These studies are a critical starting point for the field's exploration of how interventions designed to influence the quality of caregiving can alter HPA axis functioning. The interventions took a large-scale, multifaceted approach to provide initial evidence for which systems are malleable and which correlates of social support can in fact disrupt (and/or improve) future cortisol trajectories. These data suggest that although the specific mechanisms of interaction between daily parent-child relational quality and daily HPA axis patterning are unknown, interventions designed to improve consistent, responsive, and supportive care demonstrate pliability in this system and are a means by which to normalize HPA axis functioning. And, these findings provide further evidence that the preschool years are a particularly plastic developmental period for social support's influence on HPA axis calibration. Beyond main intervention effects, it is important to acknowledge individual variability in outcomes. For example, it is likely that the level of social buffering required to influence HPA axis patterning exists on a continuum that varies for different individuals. Our review suggests that the absence of a social buffer does not permanently exclude the system from appropriately responding, although it may render the system more vulnerable to downregulation when under stress. Moreover, minimizing parental stress specifically in response to child behaviors and not to overall stress and increasing the stability of the caregiver may be meaningful next steps to probe how the caregiver can buffer HPA axis patterning. However, the large-scale design of these interventions also renders us unable to draw causal inferences about specific mechanisms of change. Future interventions should seek to test these theories by targeting specific components of social buffering to probe the mechanisms of change involved in interventions. One example of this targeted intervention approach is a promising new intervention developed in our lab called Filming Interactions to Nurture Development (FIND). FIND directly targets and aims to increase behaviors that enable caregivers to be more reliable buffers to children. FIND uses the concept of "serve and return" (Schindler, Fisher, & Shonkoff, in press) in the context of strength-based video coaching to demonstrate to caregivers the ways in which they are already effectively responding to their child in developmentally appropriate ways. The intervention includes several elements that are particularly relevant to social buffering, including showing the caregiver instances during which they provided external regulation when the child is distressed. Investigations of FIND's effectiveness and underlying mechanisms are underway. It is essential to note the larger system in which the HPA axis exists and functions as well as methodologies that index chronic stress (i.e., hair cortisol). The HPA axis serves a critical regulatory role in the function and activation of several systems, including brain regions sensitive to levels of glucocorticoids (i.e., amygdala, hippocampus, and prefrontal cortex), immune health, oxidative stress, and the gut-brain axis (Bellavance & Rivest, 2014;Dinan & Cryan, 2012;Lupien et al., 2009). Promising evidence from animal studies and emerging human studies literature suggests that these associations may be multiple entry points into the system for intervention, and that a social buffering framework is a useful means to direct future intervention research and efforts. Future work should continue to seek greater clarity about the mechanisms that link acute and chronic stress and the relative role of social buffering to update and refine our working conceptual extension model. --- Figure 1. Working conceptual model of social buffer theory extension An acute stressor evokes an increase in cortisol reactivity. An effective social buffer can moderate (i.e., dampen) this cortisol reactivity. However, the effectiveness of the social buffer during an acute stressor is dependent on the quality of the parent-child relationship over time. Parents who provide consistent, supportive care are more effective social buffers for their children than those who are not. Over time, these processes (depicted in gray) shape overall functioning of the HPA axis, as indicated by diurnal cortisol, and are moderated by chronic stress, which can take many forms including but not limited to neglect, maltreatment, and socioeconomic adversity. Additionally, we recognize other pathways that likely affect this model and warrant further investigation. The quality of the social buffer may directly impact diurnal cortisol, and the nature of the acute stressor (i.e., lack of food or shelter vs. physical abuse) likely interacts with the quality of the social buffer and social buffering capacity. --- Disclosure statement Dr. Fisher is the developer of the MTFC-P intervention described herein, and a co-owner of Treatment Foster Care Consultants, Inc., which provides consultation on the implementation of MTFC-P.

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Assessing the Needs of Those Who Serve the Underserved: A Qualitative Study among US Oncology Clinicians

Overcoming cancer health disparities requires an understanding of the etiologies that drive these persistent disparities. To date, little knowledge exists regarding barriers and facilitators experienced by clinicians in their delivery of cancer care for populations most at risk for cancer disparities, such as low-income and racially and ethnically minoritized populations. The aim of this study was to assess the perspectives of clinicians across the United States, with a particular emphasis on understanding modifiable barriers to ensuring evidence-based cancer care delivery for populations most at risk for cancer disparities. Findings revealed the impact of clinical infrastructure, resources, and support to deliver cancer care equitably, social and economic challenges that often inhibit evidence-based care delivery, and the crucial importance of relationships with the community and other clinicians in the community, as well as attention to clinician wellness. These findings reveal areas of unmet need ripe for solutions to achieve cancer health equity.

Introduction Over the past decade, clinical advances have improved cancer survival, yet morbidity and mortality disparities persist [1][2][3]. These disparities are most pronounced among populations that have historically received inadequate health care and health care services, such as low-income and racially and ethnically minoritized populations. Across the United States, oncology clinicians deliver care for these populations who experience cancer disparities due to structural racism, suboptimal access to healthcare (e.g., due to lack of health insurance, underinsured, geographical isolation), and other causes [3,4]. While studies have addressed the unmet needs among clinicians in the provision of cancer screening [5][6][7] and studies examining the multidisciplinary care for patients outside the United States [8], limited data exists regarding the barriers and facilitators that oncology clinicians within the United States experience in delivering cancer care among populations most at risk for cancer disparities. The American Society of Clinical Oncology (ASCO) strives to support oncology clinicians and other professionals caring for people with cancer. ASCO is committed to addressing cancer disparities and has launched a multipronged approach to achieve cancer health equity [3,9]. Through ASCO's Health Equity Committee (HEC), the Society has advanced several initiatives to eliminate cancer health disparities, including the establishment in 2019 of the "Supporting Providers Serving the Underserved (SUS)" Task Force. The SUS Task Force, composed of oncologists and other cancer professionals with health services and cancer health equity expertise, was created with the goal of developing recommendations to engage, support, and learn from oncology clinicians who deliver care predominantly for populations most at risk for cancer disparities. The SUS Task Force chose to focus on low-income and racially and ethnically minoritized populations given the prevalence of cancer disparities among these groups. As a first step, the SUS Task Force conducted this qualitative study given the limited data available to explore barriers and facilitators to equitable cancer care delivery from the perspective of clinicians. The qualitative study would then inform a quantitative survey that would be distributed as a second step among oncology clinicians nationally to generate data on a national level that could inform recommendations and solutions. --- Materials and Methods The SPUS Task Force utilized the definition of "underserved population" as described by the Health Resource and Services Administration (HRSA), which defines this group as a population of individuals, specifically low-income and racially and ethnically minoritized populations, who have historically received inadequate health care and health care services [10]. The SUS Task Force, in collaboration with prior and current Health Equity Committee (HEC) members, generated a list of 55 medical oncologists across the United States who, based on their knowledge and expertise, spent greater than 25% of their time treating or having had experience treating predominantly low-income and racial and ethnic minority populations with cancer in their daily clinical practice. The list included clinicians who applied to ASCO's grant programs that focused on serving underserved patients. A total of 12-15 participants were anticipated to reach thematic saturation. However, as this study was conducted during the height of the COVID-19 pandemic and given the time limitations of clinicians targeted for study participation, the Task Force sent email invitations inviting 24 clinicians to participate in 30-60 min virtual, semi-structured interviews. These 24 clinicians were purposefully selected from the generated lists of 50 clinicians to participate in interviews based on geographical location. Participants provided verbal informed consent upon initiation of the interview and completed a survey prior to the interview to define their demographic characteristics and to describe the demographic and clinical characteristics of the patient population for whom they deliver care. The interviews were conducted by video conferencing via a web-based platform between 1 March 2021 and 30 April 2021 by investigators (JM and KS) using a semi-structured interview guide developed by members of the Task Force and created in discussion with members of the HEC (Supplementary Materials). The interview questions were developed using the Socio-Ecological Framework [11]. Interview questions explored clinician experiences delivering cancer care for low-income and racial and ethnic minority populations and approaches that could support their care delivery. Two non-clinical members of the team experienced in qualitative methodology, interviewing techniques, and public health (JK and KS) conducted all interviews to limit the impact of clinician-researcher assumptions and experiences on participants' responses. There were no prior relationships or interactions between any of the research team members and the participants. Interviews were recorded, transcribed, stripped of potential identifiers, and imported into qualitative data management software (NVIvo version 12). Descriptive statistics were calculated for demographic and clinical practice characteristics, which included frequencies for categorical variables. The analysis was performed using thematic analysis as described by Braun and Clark [12], given the limited research on the topic. The flexibility of this approach permitted an understanding of the experiences of participants in the broader context of their roles in delivering cancer care for underserved populations while remaining focused on the data and recognizing practical and realistic limitations [12]. The perspectives of the authors were ontological (themes shaped by participants' experiences and reflecting the realities of both participants and researchers) and methodology (shaped by experiences in data collection and analysis). Three investigators with experience in qualitative methodology and backgrounds in public health, anthropology, oncology, psychology, ethics, social work, and health services research (MP, LH, and FH) read samples of the transcribed text to get a broad understanding of the data content. The investigators used a mixed inductive-deductive iterative approach in which the investigators identified constructs driven directly by the data and applied a socioecological framework to the data to generate codes for key points and a codebook. Full transcripts were coded independently by three experienced qualitative coders (as part of Principal Investigator MP's health services research laboratory) who consecutively coded full transcripts, discussed discrepancies, and modified the codebook with the lead investigator (MP). A Cohen's kappa was calculated to measure coder consistency using all quotes from major code categories, with scores that ranged from 93 to 97% suggesting excellent consistency [12][13][14]. Thematic analysis of 1582 unique quotations was conducted, and codes were sorted into broader themes to ensure that data with themes were consistent and that themes were distinct and fine-tuned until thematic saturation was reached, defined as a point when no new additional information was found in the data [12][13][14][15]. Discussions were held between coders and the research team throughout the analysis phase to reflect on how personal experiences were used to attach meaning to themes and if assigned meanings resonated across team members from different clinical and research backgrounds. The research team held reflexive team discussions to ensure meanings assigned to themes were consistently agreed upon by all team members, as described by Barry et al. [16]. This process allowed the research team to identify personal paradigms regarding research involving underserved populations, express an orientation to qualitative research, negotiate a research methodology aligned with the aims of the study, and work to reduce bias in interpretation. Triangulation was applied to compare data gathered from discussions with experts held with other HEC members prior to the study's start with those gathered from the semi-structured interview participants [17]. Analytical memos, field notes, a codebook, coding rules, and meeting notes were kept as an audit trail for dependability and confirmability [18]. The study was reviewed and approved by the Stanford University Institutional Review Board. --- Results Of the 24 eligible participants invited to participate, 12 participated; 10 (2.4%) did not respond to the initial invitation, and 2 (8.3%) agreed to participate but did not have available time to participate in the interviews. Table 1 shows the demographic characteristics of the participants. There were an equal number of male (n = 6; 50%) and female (n = 6; 50%) respondents. Participants self-identified as African American or Black (n = 4, 33%); Asian American Native Hawaiian and other Pacific Islanders (n = 2, 17%); or White (n = 5; 42%); 1 (8%) participant preferred to not answer. Most participants had completed their terminal degree more than 20 years ago (n = 5; 42%) and spent >25% of their clinical effort delivering care for low-income and racial and ethnic minority populations (n = 9; 74%). Most (n = 8; 67%) lived in the community where they delivered care and were employed by a hospital or health-system-owned practice, group, or department (n = 5; 42%) with 10 or less full-time-equivalent oncology clinicians and subspecialists (n = 4; 33%). Most (n = 10; 83%) reported that their patient population was reflective of the broader community in which they practiced and reported that most of their patients were insured by public insurance, either Medicare or Medicare Advantage (35%) or Medicaid (30%), with no insurance or other forms of payment (such as charity care) representing 18% of their patient population. Most participants reported that Non-Hispanic White patients represented 32% of their population, followed by Black or African American (23%), Hispanic or Latino (19%), and Asian American Native Hawaiian and other Pacific Islanders (15%). Thematic analysis revealed three major themes regarding barriers (Table 2) and two major themes (Table 3) regarding facilitators as it pertains to cancer care delivery for low-income and racial and ethnic minority populations with cancer. At least we are aware of the fact that we are short-staffed. We need to hire a dedicated social worker. If we can find the funds, it would be great. So we have to survive with whatever we have. We are working to improve it. We speak closely to the administration, but we got to wait until we see, honestly. --- Table 2. Cont. Because our nurse navigator or social worker are very well-versed in these areas, I depend or rely on them to assist with what resources within the community are available. I have to say that it's still hard. You need administrative buy-in for this as well. But what we have been able to demonstrate to [executive leadership] is that there is actual value to be had, return on whatever upfront investment they made. And we always assure [executive leadership] that we will be good stewards of our resources. We wouldn't ask for stuff without demonstrating upfront the value that that upfront investment was going to make. So that has allowed us to bring in people who are able to do things like understand who needs what service, what support we can deliver beyond the direct cancer-related care and decision-making. Challenge that I deal with every day is fragmentation of care. And so to try and get all these pieces coordinated in a timely fashion, real challenge. So we spend a lot of time and staff effort for that, which the administration here doesn't understand. We don't even have a dedicated social worker here. The patient navigator, she does the social work. Whenever we are faced with transportation challenges or meals on wheels and all that, we ask her if the patient is eligible for those programs. She goes above and beyond to help those patients. So we don't need temples. We need marketplaces. We need places where people can go in and transact. I go in, I have a need, I can be sure that I'm going to get it because, Oh, I am welcome, and the services are there. And yes, the goods are high-quality. Why do I know that? Because the people who run the marketplace are truly held accountable for making sure that the goods they provide for me to purchase are high quality goods. Right now, that's not the way we have [our clinics] set up. Basically, it all boils down to having enough resources to make these things to make these changes that are unique to this population. [Other places] are able to assign additional resources to make the hospital function better. How does it feel to have that luxury? We are asked to keep showing value. For example, in the past, a guy doesn't have insurance, so can't come in. We have been able to negotiate that away with the healthcare system, where there is this idea of accepting the loss lead, if you will, that allows people to come in understanding that [the health system and clinic] is efficient enough to be able to swallow whatever minor up-front expenses there are. But it is a challenge [for them] to see the big picture, but that big picture allows you to understand that your revenue is not based on this single encounter that looks like a loss. I would bet that what happens in other practices like this is that significant corners are cut just because there's no resources to support providing navigation services, and they don't have the nonprofit organization to provide those services; the quality is going to suffer tremendously in this patient population when they don't have access to the navigation services. The main carrot that you'd have to figure out is how do you make providing cancer care in these communities more lucrative so that larger organizations do want to branch out and provide care in those communities and fill the gap that now is being served by most single doctor shops and probably not filled that well. So all of these [approaches for improving care] we have done in such a rigorous way that I have been able to go back to my senior administrators and show them data that has encouraged them to invest more resources into these programs as we're building them. Because of course, you don't want to get administrators in the business of driving their healthcare systems bankrupt, but you also don't want to be in the business of excluding people because of who they are or what they are. And so that has created a real opportunity to look at care delivery programs and how we can optimize them to do both: to be both financially solvent while also opening access to those who truly need it. It's dependent on us, though, to have to make that argument. The inadequacy of things we have around here.. I don't internalize that [the leadership] want to go and kick the dog. But we are always looking for funding for our needs to do this work. I want to say we are able to overcome the disparities because [they] are in a position to invest in the resources that are needed to help our patients. In other words, the challenge is that patients, they may not have the healthcare literacy to follow through the complicated intersections of an oncology patient; we don't have enough navigators to help them. We don't have enough social workers to be assigned to the patient. This is tough for me personally. --- Theme 2: Evidence-based care delivery is challenging due to patients' unmet complicated social and economic needs. I've learned that in my time here, that it's meeting the needs of a patient more so than their cancer. People who don't have access to resources will avoid medical care just because they know it's going to entail something; you know, if they're going to have to pay money or get people to help them get somewhere. So, it's almost as if, so I know that people may delay medical here until they just can't avoid it, and that, I think, is pretty common. For the past several decades, we have made assumptions that we have stereotype patients that are "noncompliant". Not really taking the time to understand what their obstacles might be. Things that we take for granted that we really would never understand. It takes time to get to know your patients [and their needs.] Table 2. Cont. It's a mixed bag. One of the barriers, I think, with the health literacy is a lot of our uninsured patients, their first language.. They don't speak much English at all, so that's been a complicating factor . . . there is significant issues with health literacy. There are many services patients actually don't have access to . . . many primary needs, like transportation; patients don't have appropriate phones, they didn't have appropriate Wi-Fi internet service, they did not have email set up to begin with. People who may not have had resources to begin with, and then, when the pandemic hit, being left behind in this big innovative technology shift because they don't have the basics. [My patient] told me that she missed one appointment, and she was fined because the missing appointment. I think it was $66, $65, something like that. She missed the appointment because they couldn't have transportation. So there is a pull-and-push dynamic. So for these different reasons, the proportion of patients who are, I would say, live in poverty, are of certain racial groups, or live away from the Med Center are the ones who come to us because we always are accommodating them. Language is a big barrier. Transportation has been a big barrier, but not at my current institution. They actually have a really good setup where we'll arrange Ubers for any patient that needs transportation issues. So that's been really helpful at this hospital that I didn't have at other hospitals. So I've even been able to get them in a lot easier that way, but yeah, job issues. I've had patients who just refuse to stop working and would miss several appointments because they prioritize their jobs. They needed money over coming in for treatment. That's been a barrier sometimes. Theme 3: Burnout is prevalent among clinical providers due to lack of resources, time, and effort spent advocating for resources and the social and emotional challenges patients face in these settings. The community groups are providing transportation because of the concerns about safety, and family members may have their own concerns. So, the system is stressed and that means the people are stressed, and the doctors are stressed, too. My population has, as it does for cancer in general, skews older, and so patients are reliant on others to be able to get them back and forth for appointments. There is a real health literacy issue. Patients don't want to see the doctor, and so I see patients when they tend to be very far advanced at the time of diagnosis. They don't come in for screening and when they have a cancer, they don't come in until they absolutely have to. So when I was starting as the only full-time oncologist here in this region, I was really worried. How do I be on call 24 h a day every day? And so yeah, lots of challenges in this very rural, very isolated place. It's frustrating when the administration won't listen to me but they'll listen to outside consultants. So yeah, the same things that I was saying and making the case for, the consultants were like, "Yeah, you need someone to help coordinate these new patients. You really need a position; some of the other aspects of running a cancer center". But you had to get someone else to come in and say it. So yeah, story of my life. This contributes to my personal struggles here in a big way. I'm very passionate . . . and I don't give up, which means I will push and push until I can't. Admittedly, it breaks my heart, but we end up turning away patients that don't have insurance. We just can't financially treat them. The margins are too small to have uninsured patients and write off. We just can't do it; a small center can't do it. There's just not good ways around that, so we directed the patient to a larger center. It breaks my heart. But yeah, there are real issues and I can think of a case recently; man was essentially living in a trailer, didn't have running water, didn't have heat, didn't have any family support. We don't have good options in the community to treat patients like that..living in a situation where we couldn't safely treat him..and so we transitioned to more of a palliative plan of care, and that's just the reality. It's a hard reality for me to see this day in and day out. You know, I think I struggled with that significantly. And also with the fact that, socially, some [patients] are not so supported at home. And sometimes I feel like there's very little I can do to change that. I mean, I can give them the chemo. I can watch them for toxicities, but I really can't take care of so many of the stressors they have at home to make them feel better through their journey. I see a lot of metastatic end-stage patients that with different spectrums, and it's discouraging. The professional aspects related to taking care of this population have been quite a challenge. It's often navigating a patchwork of care that is really challenging for even a medically literate person with means to navigate. This is what has really bothered me the most. When you lose that depth of commitment from the team, especially when trying to do disparities work that's important, but in terms of burnout, I am struggling with figuring out a program that can be put into place. I think being able to get away is important. But it's not always possible. You run into danger when you have just one oncologist or one advanced practice provider. In the last two weeks, I've received the equivalent of four months of referrals, and we are overwhelmed. Patients that are very sick lots of nonmedical needs and medical needs, and my schedule's full, and it's shocking. It feels like it doesn't end. We struggled through COVID, and yeah, the pandemic's getting better, and now we're getting slammed when we're exhausted. So yeah, it just doesn't end. --- Table 2. Cont. More than often, most of us will put 125% effort in doing it. I wonder how much of that can also play into burnout. When people don't feel appreciated, they tend to burn out or they get bored doing the same thing. All the frustrations come out of that fact that we need more resources. So you add all those levels, and you realize that your life is meaningless now. I come here, work hard, go home, work hard. Wake up. Work hard. Come back to work the same story, and I am not doing what I have signed up for, so from my perspective, I think addressing all these three issues becomes extremely important; at least two of them, I would say: the medical records and the mission. We are going to lose our people. There's definitely frustration when you want to see a patient, especially in the hospital, and you'd want to start treatment, but you just can't, and you know that's delaying their care . . . that can be a huge area of frustration. Working painfully over decades what I came around to recognize was I lost my children's childhood entirely. So that can make for burnout. I struggled for a few years here. Yeah, professionally very rewarding. We've been able to do this and that, but it was tough. The work is time-consuming. It is demanding. With all the rewards that come from being able to serve, we can get blinded to the opportunity cost at the personal level. And families do suffer. The families of healthcare workers suffer. You want to treat that patient and either the health literacy or cultural issues or whatnot, there's a whole variety of reasons why the patient cannot get that treatment. You wonder what else you could have done or what not. I think that takes up a lot of time and can be tiring. So, the cancer center is only a part of the main hospital, right. It's not the predominant part, so, you know, burnout affects the whole hospital, right. It just doesn't affect the cancer physicians. Certainly, there are situations where I feel frustrated by maybe what's happened with the patients before they come into our system or getting certain kind of services that are not allowed by insurance. Here, you know if you order a test, you don't know whether it's going to be done/not done. Are you going to struggle getting that patient a referral for a gastroenterologist? Because no one takes that uninsured charity patient. Now it's unfortunately a lot at the forefront because you know you will not be able to take care of the patient the same way. You're going to struggle through other aspects of care. Table 3. Qualitative Themes Associated with Facilitators of Care Delivery as Described by Clinicians. --- Theme 1: Local connections with community partners and foundations The community organizations not only do they translate and interpret, what they do is, if I say, "Okay, you need to see a GI and surgeon in the next week because this is really important," I message the interpreter, and in addition to the whole explaining to the patient, so that she follows up on it on the backend from the community center. In my time here, I've learned where to send patients, where to do different things, and who to send them to. [Community partners] bring in navigators they funded for several years. One community organization has nurse navigators trained to provide [infusion] services at [community-based] locations for things that are limited and treatments that we feel are safe to give closer to home. We also have a liaison in the community who works with the hospital and our clinic to set up opportunities when people would travel from afar to stay at local hotels. We are able to get a substantial amount of gift cards that help with not just groceries but bill pay because certain agencies can do one aspect but maybe can't meet the other. So we have gotten creative about how we can help pay for a utility bill or a person's groceries. The [community organizations and community members] go out of their way to help get patients here, and we have comfort funds to help patients get care who have difficulty getting care. Our communities have resources to help cancer patients that help to educate our patients. So, I had a patient that I saw who needed palliative treatment. And she said, 'Well, I don't have a car, and nobody in my family has a car.' So, we looked in the community, and there was someone in the community who could drive her. And then the next day we get a call like, 'We can't. The road ends before our house.' So, the person in the freestanding center says, 'I know someone who works in the Department of Transportation,' and she called them up, and they had the road cleared. So, they actually made a road within a two-day period so somebody can drive and bring this patient in for treatment. It's pretty amazing. So, we have our challenges, but we have help as well. I have an intimate, I would say, interaction with leaders in the community. Also, I was introduced to the ins and outs and what happens to folks who don't have the means and how we can support them. We distribute a lot of those grants that we get to local communities to support transportation, sometimes meal vouchers, for those who need to travel and stay away from their homes so they cannot go back and eat that same day. We have these workarounds. Screening colonoscopies is definitely a struggle. We've been getting a few physicians who've been kind enough to say, 'Listen, I would do these without a question. I will not charge them, and I will do them in my private office.' We have multiple connections out there in the community to help empower and engage the lay people. --- Theme 2: It's a calling, not a job This for me is not just a choice, it's a duty; I have to do it. The work I do is definitely more self-motivation. I have always been interested in health disparities, and so I knew early on this is what I was going to do. The self-interest makes you wake up early in the morning and stay up late at night doing stuff to where the stuff you do is aligned with a greater purpose, mission that you subscribe to. That's it for me. This job was a combination of serendipity and recognized opportunity. There are many of us out there that want to help. We just want to be planted in the right direction. We want to be a part of change. We want to be a part of implementation. We want to be able to take the conversation to the next level, we really do. My overall goal is to provide underserved patients with a comprehensive team with differing skillsets to help them navigate and overcome the challenges that they face. I educate myself all the time with regards to no shows and this and that, that dig deeper.. dig a little deeper to better understand where our patients are coming from. I think we have everything we need: native intelligence, interest. And then we just have to apply ourselves diligently to whatever challenge we're grappling with. I left another organization for the opportunity to care for a more diverse patient population. I'm the best chance [the patients who are undeserved] got, and I could try to pass this off to someone else but who? I can't necessarily get them into a primary care provider, or I could get them to a primary care provider but someone who's not able to manage a super complicated situation like this. It's on me. My goal was that patients wouldn't sacrifice anything by being treated here, that they would get the standard of care here that they would get anywhere else. I can confidently say that that's true, but through a lot of trial and error. People need to understand that without job, without housing, without transportation, without healthcare insurance, without health literacy, without all these components, now what you call it collectively the social determinants of health, without tackling all of them at once, we will not be able to provide our patients with the appropriate care that they deserve. Trying to change that culture that wants to ignore all these elements, thinking that it's your responsibility. No. It is our responsibility. --- Theme 3: Experiential Training Was Key to Delivering Care for Underserved Populations The informal training was during my residency. My residency gave me a good foundation going into my oncology fellowship to think maybe how I should think about questions and people differently. We didn't really get any instruction on [how to deliver this care]. Then certainly, in practice, out at meetings and stuff, it's nothing that I focused on. I imagine there probably are some lectures and access to [formal lectures], but it's nothing that I sought out. I learned by doing. It taught me, at least, right off the bat that you have to handle these patients differently. I did my fellowship at an institution where I saw few underrepresented groups. It wasn't until I started practicing that I learned how to do this. When you complete your fellowship and then you transition to a community-based program, there is this idealistic approach that you will have all the resources available. But the demands of the patient population and your time constraints and what you need to do to make sure people get care . . . well I don't think that that is absolutely clear [in fellowship or other formal training]. Early on in my residency, I learned that if the patient was sitting in front of me, I would actually pick up the phone and schedule the scans and the blood work and set it all up before they left. It was almost like . . . because there was no real secretary to help with all of that, right? And so, I think early on, I think I learned that there's a population that, unless you set up very clearly all the expectations and line up things, the chances are they may not be able to follow through. --- Barriers 4.1. Theme 1: Lack of Executive Leadership Recognition of Resources Required Participants noted the significant amount of time and resources needed to deliver evidence-based cancer care and the continual need to justify necessary resources to executive leaders. For example, one explained, "..the administration [needs to] understand that we need a staff person just to coordinate records. [It] doesn't make sense to them because they're used to a surgery clinic or a primary care clinic where a patient comes in, sees the doctor, goes on about their day". Another noted, "I don't think we are getting enough support from the outside, so we have to survive with whatever we have". One stated, "it all boils down to having enough resources to make these things to make these changes that are unique to this population". Within the primary theme of lack of administrative support and resources, two additional subthemes emerged. --- Subtheme 1: Reliance on Short-Staffed Team Members All participants described dependence on under-resourced and understaffed teams to address health-related social needs and noted the significant need for dedicated staff to ensure evidence-based care delivery. One stated, "We have quite a busy practice. We are only two oncologists here. We don't have enough navigators to help [patients]. We don't have enough social workers to be assigned to patients". Another noted, "We don't even have a dedicated social worker here. The patient navigator, she does the social work. Whenever we are faced with transportation challenges or meals on wheels and all that, we ask her if the patient is eligible". Another stated, "From the moment a patient is referred to the time they start treatment . . . to coordinate [care] is really hard. I want to hire a navigator, but we just haven't been able to. We've had an opening for over a year and haven't been able to fill it". One stated, "Interestingly, less-resourced clinics, like ours, do a phenomenal job, considering how difficult it is to generate resources for people who may not be able to pay. In other words, anybody can come here and if they don't have resources, they're not turned away. [They can be turned away] at a private, more-resourced hospital, but it doesn't happen here. That is the challenge. Then, all the frustrations come out of that fact, that we need more resources and [the leaders] are not investing". --- Subtheme 2: Constant Need to Prove Value All participants noted unmet needs in advocating for additional resources and support staff to ensure evidence-based cancer care delivery. One stated, "So me talking to the administration, they don't get it. They don't understand what it takes. What I constantly get told is we don't need the staff to do that, which I hate to think is the barrier". Another stated, "So people want to restrict the lens of what they look at to a convenient sample when, in reality, every life matters. So, the fact that somebody didn't come into your center of excellence doesn't mean that their life is not valuable to someone, doesn't mean that you shouldn't be counting them when you're trying to figure out how well are you doing and where the opportunity is to do better. In fact, it is looking at those places that gives you the greatest opportunity to do better and have greater impact than if we just wanted to keep buffing and shining the glittering part of our healthcare system that we're most proud of". Another stated, "We need [additional navigators and social workers], but we don't have them, and will the hospital invest in it, why? You have to keep asking for certain things.. And you get X amount. So, I feel like it's a big issue". One stated, "The urban poor have not traditionally been the focus on my healthcare system, and so we have to explain and show time and time again why and what is needed. It's exhausting". --- Theme 2: Care Delivery Inhibited by Unmet Complicated Social and Economic Needs Participants noted that the delivery of evidence-based care was adversely impacted by challenging patient social and economic needs. Many discussed how the healthcare system currently does not address these needs or only partially addresses them. One stated, "The [health] system is not set up to do this . . . I can't get care to my patients if they do not have a way to get to my clinic or they do not have a way to eat or they do not have a place to live. This is not something that our clinic is set up to do". All participants noted that health-related social needs impacted patient wellbeing and frequently inhibited evidence-based care delivery. Many noted that patients lacked transportation to the clinic or had extensive commutes. Almost all participants, however, had identified solutions to overcome transportation-related issues. One stated, "Transportation is a concern, but we have ways to get people the rides they need". All participants noted the prevalence of other health-related social needs such as food insecurity, housing instability, and limited health literacy. One participant stated, "There were patients that would use their rideshare to get to the clinic because that was the one thing that was covered, but they were hungry". Another stated that "patients would forego treatment with a response of 'I don't have money for groceries.'" Housing instability was also noted as particularly concerning and impacting care delivery. One participant stated, "The social circumstances are something that we cannot help. If someone has no place to stay and they stay in a shelter, their capacity to come back and forth is not possible. Somebody who is living in a shelter, then there's nobody at the other end to take care of the poor in a safe manner. These are some of the things that are beyond individual's control and definitely beyond the control of the hospital". Issues involving health literacy were frequently mentioned as barriers to care. "I'm using words like 'doo-doo hole' to explain anal canal to a patient because that's the only word that they would really understand. The challenge is identifying the patients who require that terminology and require that discussion". Another stated, "So my thoughts are that there may be challenges with limited health literacy not just in our non-Englishspeaking population but throughout our population". In response to challenges regarding health-related social needs, participants indicated searching for solutions to ensure continuity of care for their patients. Participants described how they created transportation solutions, such as ride shares, clinic vans, and gift cards for gas money, given the prevalence of this unmet need among their patient population. One stated, "I have patients who live in a place where they don't have personal transportation means. They have to depend on a Medicare/Medicaid van to bring them to get treatment or to be seen, and what have you". Another participant addressed how the clinic provides monetary support for both transportation and food. "We give a lot of gas vouchers to our patients to give credits for that. We do a lot of gas vouchers, meals, meal vouchers as well. This is not something that happens rarely. I mean, every day we have patients who are going to get one or the other or both". Some described how they responded to these unmet social needs by changing their clinical workflows. One stated, "What we've done, at least in my practice, is that we don't let them walk out until they have their appointment and until they have their imaging scan scheduled. We wrap up all of it in the office. It's resource intensive for my medical assistants and the navigators, but that's the only way we can ensure that continuity of care". --- Theme 3: Burnout Prevalent Due to Lack of Resources and Time Spent Advocating and Proving Value All participants noted that a lack of resources to deliver equitable, evidence-based cancer care coupled with increasingly burdensome administrative processes negatively impacted their wellbeing. Many noted that these issues contributed greatly to "burnout". One stated, "So, I would say, my sources of frustration are more systemic. I mean, it affects all of our patients and all of our doctors. Preauthorization, documentation. I'm sure a lot of this was meant [to help]. I don't know about preauthorization, but some of the documentation was meant to make things more efficient but if I made a little graph of my practice of how much time I spend with patients and how much time I spend doing paperwork, I'm sure those lines are becoming inverse". One stated, "Now I understand the price that we often pay as professionals. We feel rewarded by the opportunity to serve others. But oftentimes, we steal time from families and our loved ones. There are only 24 h through any day, and I was alone in my work of filling out paperwork and more paperwork just to get the care to the people who need it". Within the primary theme of burnout, two additional subthemes emerged. 4.6. Subtheme 1: Wellbeing of Clinicians Associated with Delivery of Evidence-Based Care Many participants noted that burnout was associated with their inability as professionals to overcome their patients' social and economic needs-needs that directly inhibited the delivery of evidence-based care. One stated, "So the disparity frustration I've really struggled with like, how am I going to get the patient to see a gastroenterologist, a pulmonologist, who will take them happily without supplementing and pleading and requesting them get squeezed in to do it because they have no insurance". Another stated, "[Our patients] have a significant comorbid health load, and they have significant challenges about what they can't meet with transportation or not having a working phone, being homeless, things that we see all the time. I think that really impacts the way providers try to then deliver the care and then manage their own time and affects us a lot". Another stated, "If you don't have social workers, navigators, good systems in place, then it's very easy to work your clinic load then round at a hospital and not finish your day until 10:00 or 11:00 at night". Another stated, "There are only a few of us. So, we would work through lunch, and it's just not sustainable; you have to use time and manage your time in ways that is still going to protect your ability to not faint, your ability to be appropriate with patients; if you don't have anything left, you don't have anything to give to your patients". --- Subtheme 2: Burnout from Worry about Other Team Members Participants noted their concern about the wellbeing of their team members, including nurses, social workers, and ancillary staff members. One stated, "Yeah, burnout is real. I've remained cognizant of that, but it affects everyone in the care team. So it's not just the oncologist, it's everyone in the care team. So I think I recognize it in nurses. I think I recognize it in clinical staff, support staff. When you're dealing with very sick, high-acuity patients with a lot of needs, burnout problem is real". One stated, "We don't go into this thinking that we go on to fix problems right away. So, we get used to that; psychologically, we have to have some amount of resilience in order to survive. Even as there is progress, it is still a challenging discipline that requires resilience on the part of the physician or the patient care providers. It can be a lot to think about how nurses and others are experiencing the brunt". --- Facilitators While barriers to care delivery were stressed throughout the interviews, participants also noted facilitators. --- Theme 1: Local Connections with Community Partners and Foundations Participants emphasized the importance of forming collaborative relationships with community members and community organizations to facilitate cancer care delivery. One stated, "Without the [community organizations], we would just be in dire, dire straits because so many patients wouldn't be able to get the care they need". Another described how collaboration with community organizations helped them to address health literacy and language barriers. "We went to the Korean center that has Korean-speaking people who go out in the community, and they help translate. They're sort of our translators". Participants discussed how their interpersonal relationships in the community positively impacted their approach to cancer care delivery for low-income and racially and ethnically minoritized populations. One stated, "I guess in community practice that comes along based on your interactions with [other community members]. Like, at least with my gastroenterologist, we've talked so often before about these patients have no real insurance; how do we tackle them? And then we discussed it with the disease management team and came up with the pathway of accepting them". Another stated, "Someone might need something like lymphedema therapy, and they're not in the network with the closest location, but they need to get to another part of town and they can't because of distance because of the transportation. Well, the [community organization] provided with a grant for funding the hospital and also working with the clinic to provide rideshare to provide medical Uber rides, and that has helped a number of individuals get to appointments or be able to get the care they need". Another stated, "It's about who you know and how you know them. You know we go out and talk to people in the town and other advocacy groups and say, 'here's the problem,' and then we can come up with the solutions together". One stated, "We told [the surgeons] about those patients who are waiting for elective surgery related to their cancer diagnosis and how they were at risk for bad outcomes because they were already delayed, and they put them on an emergency list, and they're operating on them". All participants noted that their passion and ties to the community facilitated the delivery of evidence-based care for populations most at risk for cancer disparities. One stated, "If you don't help the underserved population.. well, you see the difference every day". Another stated, "I was born here. I was actually born in this hospital, the hospital where I practice. My great grandfather was sheriff here. So, I have deep ties here, and I don't know; it's really tough to recruit, but I grew up in this rural setting so I always knew I wanted to come back". Another noted, "So I finished my fellowship and started with this practice, and I asked when I was interviewing about where there was a place I could focus on [underserved populations] both in terms of patient population, demographics. and research". One stated, "It's more than just a job to all of us. This is what we are supposed to do". --- Theme 3: Experiential Training Participants noted that they received little to no formal training in working with populations most at risk for cancer disparities. All participants agreed that the care they delivered was based on practical experience. For example, one participant described, "Unless someone is here, all the knowledge you get outside is all book knowledge. It doesn't apply to your circumstances. The learning takes place here on [the] ground in the surroundings in this environment". Another participant stated, "The challenges are incredibly difficult, not insurmountable, when you complete your fellowship, and even if you've spent time in an academic center, and you then transition to a community-based program, there is an idealistic approach. But if you read through the published information, it doesn't help you". Another participant reflected on how their first-hand experiences, such as witnessing racism, influenced how they approach their clinical practice. "I did not have any formal training about that, honestly. I wasn't aware of the magnitude and the history of the United States. I knew about the racism and racial discrimination, and so on and so forth, but I did not realize to what resources are available, and the demands on the patient, and the degree this has also extended to our time now and continues in every single day on certain groups of the population, and your time constraints. I don't think that is absolutely clear [when you move to an under-resourced setting], specifically on our Black community. But I totally understand this problem and in completely different terms and different ways". --- Discussion In this qualitative research study, oncology clinicians described their experiences in delivering care for populations most at risk for cancer disparities, specifically low-income and racially and ethnically minoritized populations. Study findings uncovered key barriers that contribute to ongoing cancer care delivery disparities and clinician burnout. The study also revealed facilitators that can help overcome these barriers and contribute to improving evidence-based care equitably and clinician wellbeing. Clinicians not only delivered care with a dearth of resources but also increasingly devoted time and effort to advocating for resources to facilitate evidence-based cancer care delivery for underserved populations. In 2017, the American College of Physicians position statement recommended that administrators and executives analyze and mitigate or eliminate the adverse effects of administrative tasks on clinicians [19]. Our research findings, four years after these recommendations were made, further support this need, especially in clinical settings where policies and practices may place undue burdens on understaffed and under-resourced teams. For example, a critical evaluation of the care teams' workforce composition, such as the efficient and most effective use of social workers and navigators, can identify if the care team is appropriately staffed to address healthrelated social needs. The correct composition of care team members, with each team member working to the top of their licensure, not only improves workplace efficiency but also more effectively delivers care for populations with complex social and economic challenges. Studies show the value of such team compositions, specifically in the consistent delivery of high-quality care and cost savings via the elimination of time spent by clinicians on activities that may be more effectively and efficiently delivered by other members of the team [20][21][22]. Our findings reveal that the burden of team staffing evaluations was often organic and shouldered by the clinicians who were delivering the care. Such evaluations should not be the sole responsibility of the physicians delivering the care alone but also be heavily influenced and led by the administrative leaders responsible for resource allocation. Our results overwhelmingly highlight the importance of organizational commitment at the executive level, including visible long-term actions and investment dedicated to improving the delivery of care for underserved populations. While most participants had organically created process and practice workflows to ensure that they and their teams could deliver evidence-based cancer care for low-income and racial and ethnic minority populations, participants consistently noted a lack of executive organizational commitment to such improvement efforts. Consistent with prior work documenting the impact of conflicting policies and practices on moral distress among clinicians [23,24], our study revealed that organizational barriers, including a lack of devoted resources and investment, often resulted in conflict with professional commitment to ensuring equity in care delivery for underserved populations. It is well known that such conflict and moral distress can greatly contribute to burnout and impact the wellbeing of cancer care clinical team members [23,25,26]. Clinicians in our study reported that their under-resourced teams, in addition to continually having to advocate for resource allocation, diverted their time and focus from more clinically important activities, which was linked with stress and burnout for them as well as added stress due to their concern for the wellbeing of their team members. Interpersonal and professional relationships with other clinicians in the community and community-based organizations were consistently identified as a major facilitator for evidence-based cancer care delivery among low-income and racial and ethnic minority populations. This organic network of clinicians and community-based organizations served as an "underground railroad" network with a shared vision that collectively mobilized resources and directed them to ensure the delivery of evidence-based cancer care. Such networks of community and local engagement are recognized by the Institute of Medicine and others as the key component of addressing cancer disparities at the local level [27][28][29]. As noted in organizational behavior literature, community capacity is crucial to achieving change and involves building both political and social capital within and outside of the community [30]. As demonstrated in other studies evaluating facilitators for health promotion, skills in community capacity building and collective efficacy [31], or shared values and norms for the common good, were identified in this study as a key component of care delivery in resource-limited settings and were skills attained only through experiential learning, as participants highlighted. A more formalized process to collectively solve prob-lems relating to promoting health equity should be developed and led by the organization as a whole. Such organizational shared vision, leadership, voice, and power can expand the reach and scale of organically derived networks and is necessary to prioritize resources and infrastructure necessary to deliver equitable evidence-based cancer care at the clinic, system, and community levels. Burnout was identified as an ongoing, critical issue due to the many barriers revealed in this study. Administrative tasks, the constant need to prove the value of the resources for ensuring care delivery for underserved populations, and under-resourced teams contributed to ongoing wellbeing concerns among clinicians. While passion for care delivery among underserved populations was noted as a facilitator for ensuring equitable care delivery, such professional fulfillment also contributed to burnout, especially when systemic resource limitations or the complex social and emotional needs of patients inhibited evidence-based care delivery. Concern for other members of the team and their wellbeing also contributed heavily to the mental load and wellbeing of clinicians. Modifiable barriers identified in this study are ripe for potential solutions that ASCO and other organizations may implement. These solutions, depicted in Table 4 and derived from key barriers identified in this first phase of the SPUS Task Force, will be evaluated in a national survey distributed to oncology clinicians across the United States to determine which solutions should be considered and prioritized by the national society. Such findings will help to move from description to action in the support of oncology clinicians caring for populations most at risk for cancer disparities. Our study had several limitations. First, our method of identifying participants relied on a convenience sample. Due to the lack of available data regarding clinicians who predominantly deliver cancer care for low-income and racial and ethnic minority populations, the current study utilized non-random, purposive sampling (based on the geographical location of participants), relying on lists generated by members of the Task Force and the HEOC to identify potential participants for the study. As such, the sampling strategy may bias the results. Second, the study was conducted in 2020, during the early phase of the COVID-19 pandemic, when many healthcare settings and community support organizations experienced unprecedented challenges in delivering care and support for patients. The response rate to our requests for interviews was around 50%, with the primary reason for non-participation given as "time limitations". It is unclear, if these time limitations were due to limitations of routine practice or were due to additional burdens attributable to the COVID-19 pandemic. Either way, it is possible that our study sample was biased towards clinicians within more resourced settings or who have personal characteristics that make them more likely to respond. Third, no participants self-identified their ethnicity as Hispanic or Latino/a/x or a race other than the ones we listed. Due to the small proportion of oncology clinicians nationally with these self-identified characteristics, it is unknown whether experiences may differ. Finally, our study was conducted only among US-based clinicians and in English, limiting findings. Strengths of our study, despite these limitations, were that we had an inclusive, diverse sample of respondents with varied experiences delivering cancer care for low-income and racial and ethnic minority populations, including perspectives of care delivery for unregistered migrants, refugees, and similar groups across the United States. Additionally, we achieved thematic saturation across our interviews, allowing for confidence in the representation of our sample and the generalizability of our findings. --- Conclusions The current study provides key insights into the barriers and facilitators faced by clinical oncologists delivering cancer care for low income and racial and ethnic minority populations. Clinicians identified modifiable barriers, most notably their difficulty in convincing executives and administrators to understand the complexities of care for underserved patients and the need for additional resources. While clinicians are adept at working with what they have and building workflows to ensure the best possible care for their patients, the numerous day-to-day challenges contribute to moral distress and burnout. Collective efficacy and community capacity across multiple levels are important and necessary facilitators for care delivery in under-resourced settings. This work lays the foundation for understanding how and why clinicians work with underserved populations and provides insight for future actions to support clinicians and improve cancer care for these populations. Informed Consent Statement: Informed consent was obtained from all study participants involved in the study. --- Data Availability Statement: Data Availability Statement: All data supporting the findings of this study are available within the article, Supplementary Material files, and from the corresponding author upon reasonable request. --- Conflicts of Interest: The authors declare no conflict of interest.

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9/11 and the Power of the Network Society in Alejandro González Iñárritu’s Babel

changed the course of contemporary history in more than one sense, including the revitalization of the so-called "war on terrorism". For Craig Calhoun, 9/11 is the date on which the "non-cosmopolitan side of globalization struck back " (2002: 871). Given that most of the terrorists were Arabs who had studied in the West, the attacks unveiled a dark side to globalization in which flows of people, money, weapons and drugs suddenly became a challenge to security and state sovereignty (871). As Calhoun puts it, "the terrorist acts were framed as an attack on America rather than an attack on humanity" (870). The events precipitated a new state-centered politics based on the idea of a 'just war', which made military war on terrorism 'inevitable' and justified, crushing the cosmopolitan concerns that, in the view of many, had started to flourish by the late 1990s (870). The coming down of the Berlin Wall in 1989 had questioned the development of militarism, and undermined the opposition between East and West in favor of a more cosmopolitan focus on human interconnectedness that challenged the hegemony of the nation-state. As Gerard Delanty emphasizes, the awareness of global interdependence in the post-Cold War made cosmopolitanism all the more urgent (2009: 98). Crucially, Vertovec and Cohen (2002) explored the multiple facets of cosmopolitanism as a descriptive social category and as a normative concept focusing on the struggles for global justice and the construction of a new world order. Today, although such ideas seem to be wearing thin afterCrash (Paul Haggis, 2004) Syriana (Stephen Gaghan, 2005) Traffic (Steven Soderbergh, 2000)

September 11 and the war in Iraq (Stevenson 2011: 243) interest in cosmopolitanism as a transformative perspective has not declined (Rovisco and Nowicka 2011: 1). In fact, cosmopolitanism is increasingly regarded as a key analytical tool for studying a variety of outlooks and ethico-political practices, especially since Beck and Sznaider (2006) proposed going beyond the limitations of methodological nationalism by adopting more complex and global perspectives. Alejandro González Iñárritu's third feature film, Babel (2006), is global in terms of production and release. An international co-production between France, Mexico and the United States, it was first shown at the Cannes Film Festival and later at a number of other international festivals. It features seven languages -English, French, Spanish, Berber, Arabic, Japanese and sign language-and four settings -the US, Mexico, Japan and Morocco-in which, as in other multiprotagonist films, a number of characters are connected by a global thread. Babel may be seen as both a post-9/11 movie and as a filmic counterpart to Calhoun's insights in that it adopts a cosmopolitan stance for understanding the complexities of the global network society. The film brings to the fore the fact that the war against terrorism, promoted by one nation-state, affects remote places, where innocent people are criminalized as scapegoats for the sake of the protection of more privileged citizens. Hence, it problematizes non-cosmopolitan forms of domination and subordination in the current network society. Some critics have analyzed Babel in relation to Manuel Castells's concept of the "network society", that is, one "whose social structure is made of networks powered by microelectronics-based information and communication technologies" -by social structure, he understands "the organizational arrangements of humans in relations of production, consumption, reproduction, experience, and power expressed in meaningful communication coded by culture" (2004: 3). For example, Paul Kerr explores the film's social relations of production, drawing on Castells's assumption that the work process tends to be globally integrated while labor is locally fragmented. For Kerr, "the film package, Babel, was constructed by globalized, casualized labor, and assembled by international agencies and companies which circulate capital -in much the same way as the circulating object, the Winchester, changes hands in the film" (2010: 39-40). In another example, Celestino Deleyto and Maria del Mar Azcona view Babel as a powerful fictionalization of the network society, characterized by the two emergent social forms of time and space: 'timeless time' and the 'space of flows'. The film's narration is simultaneously governed by 'traditional time', that is, linear, irreversible and measurable chronology, and 'timeless time', a new conceptualization of temporality that gives us immediate access to events happening in any part of the global network society. Similarly, the 'space of places', characterized by geographical location and physical proximity, is superseded by the intangible space of flows -of information, capital, work and technology-across continents (2010: 51, 66-67). In this article, I propose an analysis of Babel's critique of unequal power relations in the global network society, in particular, after the 9/11 attacks. The film makes extensive use of formal strategies that encourage the viewer to reflect about noncosmopolitan positions of domination and subordination in the network-society of the information era. I will draw on Castells's belief that, although a network-based society is ideally a non-centered form of social structure, it is also a source of dramatic reorganization of power relationships. Babel narrates four stories that take place in three different continents over a fiveday span. The film scrambles the chronology of these storylines by means of a regular pattern that divides the film into twenty-four sections. The opening section, set in the Moroccan Atlas, introduces a goatherd, Abdullah (Mustapha Rachidi), and his two teenage sons, Ahmed (Said Tarchani) and Yussef (Boubker Ali El Caid). We witness the transaction of a rifle between Abdullah and his neighbor, Hassan (Abdelkader Bara), who was once given the gun as an act of gratitude. Hassan gives the rifle to his two teenage sons, who decide to test it, first on some rocks and then on a moving bus. They realize they have hit the bus, and run away, at which moment the second section starts, taking us to San Diego, where an undocumented Mexican nanny, called Amelia (Adriana Barraza), is in charge of two siblings, Mike (Nathan Gamble) and Debbie (Elle Fanning). The events of this storyline shuttle from San Diego to a Mexican village close to Tijuana on the other side of the US-Mexico border. The third fragment, also set in Morocco, revolves around a married couple from the United States, Richard (Brad Pitt) and Susan (Cate Blanchett), who happen to be Mike and Debbie's parents. While on a tourist bus, Susan is shot, and the incident is misinterpreted as an act of terror. The fourth section takes spectators to Tokyo and revolves around Chieko (Rinko Kikuchi), a deaf-mute teenage girl. Apparently unrelated to the other stories, we later find out that Chieko's father, Yasujiro (Kôji Yakusho), gave the same rifle that has now wounded Susan to his Moroccan hunting guide as a present at some point in the past. The fifth section returns to Morocco, where Ahmed and Yussef are running home after having unintentionally shot Susan. This order (Morocco-San Diego/Tijuana, Morocco, Tokyo) is almost strictly followed until the end of the film, resulting in a complex, fragmented and multi-focal film (see Deleyto and Azcona 2010: 50-56). By means of its multi-protagonist narrative, Babel depicts the global reach of the accidental shooting of a United States citizen in Morocco in order to exemplify the devastating effects of the sovereign prerogatives of certain countries, specifically the US, in a global world increasingly driven by fear of terror after 9/11. As Ezra and Rowden argue, "the rhetorical deployment and exploitation of September 11 and the subsequent Iraq war by political officials and some elements of the American media created a popularizing discourse that turned all US citizens into potential victims and all foreigners into potential victimizers " (2006: 11). In Babel, the shooting incident is rapidly labeled as a terrorist act by the United States although, as the Moroccan media claim, the country has been free from terrorist activity for many years. Yet, the connection between the global security network and the international media system is highly effective in quickly spreading the misconception, putting extreme pressure on the Moroccan authorities. Fearing the damage that the international crisis could cause to the economy of the country, they abuse their own subjects, ignoring human rights. As the film shows, diverse forms of domination are ascribed to certain nation-states and their privileged subjects, and treatment by law enforcement authorities under international pressure is uneven. In contrast with the abusive practices endured by the family of goatherds in Morocco and the Mexican undocumented immigrant, the United States and Japanese citizens are treated respectfully. Notably, the suggestion of terrorist links by the US Government is enough to shut down the air space in the area, so that Susan can be evacuated. As Ulrich Beck states, since the global and the local are "mutually implicating principles", global processes "transform the quality of the social and the political inside nation-state societies " (2002: 17). The unbalanced logic of power governing present-day network society is a key theme in Babel, and it runs parallel to the film's uneven network structure. In her analysis of multi-protagonist films, Azcona draws on Deleuze and Guattari's "acentered structure" of "the rhizome" as the structure that best represents socalled mosaic films or network narratives like Babel. As she explains, because these movies lack a narrative center, they potentially disrupt the hierarchical organization reflected in conventional movies -which tend to privilege one character over the others (2010: 21). In the past decade, a number of multi-protagonist films -such as Traffic (2000), Crash (2004) and Syriana (2005)-speculated about the emergent network society, which was being theorized in the social sciences (Wellman 1999;Castells, 2009;Van Dijk, 2006). In these films, the network morphology and the proliferation of points of view it offers tend to counter the inequalities they expound. While Babel roughly conforms to this logic, its presumably even structure disguises unequal power relations at its basis. As the narration unfolds, the apparent structural and narrative balance is put to the test and, gradually, the tourists' (Richard and Susan's) storyline takes shape as the central and dominant one, mirroring the film's central concern with power dynamics. Therefore, against the apparently decentralized narrative conventions of ensemble movies, the shooting incident becomes the focal event in Babel, and the storyline that deals with it, together with its protagonists, are given more prominence. In other words, although the four-part structure of the film, as expected, appears to be balanced due to scrupulous compliance with established turns and an even distribution of screen time, the structure turns out to be onesided for a number of reasons that I aim to explain next. Apart from the higher visibility of the two internationally acclaimed stars playing the US tourists in Morocco (Brad Pitt and Cate Blanchett), at a structural level, one key feature that makes the tourists' storyline superior is its high interconnectedness with the others. Richard and Susan's narrative strand has a higher "networking power". Castells coins this term to refer to "the power of the actors and organizations included in the networks that constitute the core of the global network society over human collectives or individuals who are not included in these global networks" (2009: 42). James S. Coleman refers to a similar kind of power as "social capital": in the network society, the relations between the nodes increase the social capital, facilitating productive activity and "making possible the achievement of certain ends that in its absence would not be possible" (1988: S98). For Mark Buchanan, although the network society is in principle a noncentered structure, it is actually organized through central hubs that dominate network activity. In this sense, he argues that the Internet and the World Wide Web have few elements with a huge number of links, and that this is symptomatic of greater power (2002: 36). As John Urry exemplifies, a small number of nodes, such as Microsoft, Google, Yahoo, CNN, BBC have a very large number of links, and, therefore, control the web. The web is, for him, an "aristocratic network", where those who are connected become ever more connected, their power being increased over time (2007: 215). In Babel, as in the network-based society it represents, switches are relevant sources of power, and Richard and Susan's storyline proves more powerful because it is the only one related to all the other stories. Susan's shooting is causally connected with the events of the Moroccan (Ahmed and Yussef's) narrative strand; it triggers the action of Amelia's narrative, and also infiltrates the Moroccan and Japanese media. None of the other narrative strands is bound to all the rest. For example, Chieko's plotline is faintly linked to the Moroccan story through the transaction of the rifle, and infiltrated by Richard and Susan's strand through the media but it does not interact with Amelia's. In turn, the Moroccan line of action is tied only by coincidence to Richard and Susan's and to Chieko's storylines but it is not directly bound to the Mexican one. Finally, this narrative thread is not connected with the Japanese or with the Moroccan plotline, being attached solely to Richard and Susan's. Hence, the centrality of this storyline is grounded on its higher connectivity, exerting potential influence on the other narrative strands. Positions of structural dominance and subordination are further qualified by the nature and direction of the connections in the network narrative. As in many multi-protagonist films, in Babel, the four storylines are initially presented as independent, and they become gradually interconnected. Yet, the links between narrative strands are not always of the same nature nor do they all have the same relevance. For example, while the Japanese plotline is bound to the two stories that take place in Morocco, its attachment to them is very weak. They are barely hooked up by the slender causal link provided by what David Bordwell calls a "circulating object" (2006: 97): the rifle that is given as a sign of gratitude is sold to Abdullah and later accidentally wounds Susan. It is an "attenuated link" (99), to use Bordwell's terminology, since the interconnectedness is governed by chaos theory, in the shape of the so-called 'butterfly effect'. This impression of chance is reinforced when some of the characters involved in the shooting fleetingly appear in the Japanese news. Although this plotline shares key themes with the others, it mostly serves to establish parallels and contrasts between characters, and causal connections are minimized. Thus, the interconnectedness of the Tokyo line of action is fairly inferred as coincidental and ephemeral. In the lines that follow, I will explore how the level of connection of the tourists' storyline is not only characterized by a larger number of links but also by more consistent narrative ties than those of the three others. Firstly, in a film in which most people are remotely bound by little more than chance, the attachment between Richard and Susan and the characters in Amelia's storyline stands out as the most solid: they live in the same house, Amelia is entrusted with their employers' home and children, and Richard and Susan are Mike and Debbie's parents. Secondly, while many narrative links between the plotlines are based on sheer accident, these two stories are interconnected by causal coherence through a number of telephone conversations between Richard and Amelia, in which he compels her to stay at home with his children the same day her son is getting married. The repetition of one of the telephone calls from different points of view invites the spectators to interpret these conversations as pivotal, to weigh up the scenes from both points of view, and to trace the connections and build structural hypotheses about the nature of the relationship between the two narrative strands. While multi-protagonist films usually depend on chance, and not on traditional causality, to interconnect their narrative-strands (Bordwell 2006: 93, 100;Azcona 2010: 37), I will try to show here that Babel deviates slightly from this logic: the rifle may get the ball rolling but Amelia's fate is governed not just by random chance but by a direct order from her employer. This is also indicative of normalized positions of domination and subordination both in the employers' house and, globally, in other parts of the world. The fact that one of Richard's telephone calls to Amelia is shown twice and from two different points of view urges us to think about and examine the characters' motives and needs. This speculation is symptomatic of the fact that they have choices and a certain amount of control over the events. It points to principles of causality, together with a certain share of responsibility on the part of the characters for the consequences of their actions. Is Richard's request that Amelia stay at home with Mike and Debbie on her son's wedding day inevitable? Is his inflexible attitude towards her a major cause bringing about the near death of Amelia and the children on the border? What options are available to Amelia after Richard's request? Is her decision to go on a one-day trip with the children irresponsible or imprudent? For Azcona, although network narratives seem to be just built out of ephemeral or attenuated links, there often seems to be a place for reflection on the "power of the individual" for the responsibilities behind apparently randomly caused acts (2010: 35). This is also the case in Babel. Susan's shooting in Morocco is clearly marked as an accident, even if it is one that brings light to the contradictions of a global situation in which children are sent off to work with weapons. Amelia's decision to take Mike and Debbie to her son's wedding in Mexico may be motivated by random events (Susan's accident, in turn caused by the transaction of the rifle, and the fact that Susan's sister cannot make it to San Diego in time) but is a conscious decision on her part (we see her trying to leave the children with a friend before deciding to travel to Mexico with them). Since the telephone call is repeated in both storylines from different perspectives, we are encouraged to think that what happened later on the border could have been avoided if the characters had acted differently and, therefore, some kind of responsibility is ascribed to them. Moreover, the fact that the first phone call opens Amelia's plotline and closes Richard and Susan's indicates chronological contiguity between the two narrative strands, further supporting the hypothesis of a cause and effect logic, and departing from the randomness of the rifle, the circulating object that characterizes some connections in Babel. Ultimately, the cause-effect nexus between the two narratives suggests structural subordination of the Mexican storyline to Richard and Susan's. Since the events of this plotline influence to a great extent what happens in Amelia's, the latter can be considered to be an appendage or a prolongation of the former. The repetition of the phone call plays a key role in the articulation of the overarching theme of power relations, hinting that non-cosmopolitan dynamics embedded in everyday dialogue underlie the characters' behavior, bringing about disastrous events. Wanting to know who is responsible for the tragic events on the border, spectators are prompted to wonder how the characters could have acted differently, given that, in the second version of the call, we have more knowledge about their motivations and the effects of their choices and actions. The calls in Amelia's plotline point to her subordinate status and degree of vulnerability. Our first impression is grounded on Richard's authoritative tone, in contrast with the nanny's subservient attitude, and on the fact that the employee is not allowed to defend her position, since Richard hangs up on her. In this scene, we tend to identify with Amelia: although we barely know her, she has been presented as a loving and thoughtful person when we see her tenderly playing with the children who are enjoying their time with her. As Deleyto and Azcona argue, this portrayal of the Mexican nanny as nurturing and protective is enhanced by the warm colors and lighting of the house, including Amelia's red T-shirt (2010: 101). As the phone call unfolds, we only see her image, and feel, therefore, closer to her than to the anonymous, authoritative voice at the other end of the line. While the movie criticizes Richard's unwillingness to genuinely engage with the nanny in the first version of the first call, it maneuvers for the opposite effect in the second -at the end of Richard and Susan's story-when we get his point of view. His responsibility is minimized this time because we know that he has been living an extreme situation trying to save Susan's life, and that he has been pushed to his limits. In this case, we get a close-up of his smiling but tearful face as he speaks to his son; and we can hear a more humanized voice, this time unmediated by technology. We are, thus, invited to sympathize with his role of suffering victim. Yet, even if the movie tends to exonerate Richard in the second version, the many dimensions of the calls in their different versions crucially point to the lack of cosmopolitan interconnectedness in the network society. The film does not give us answers about who is responsible for the events that follow the interaction but asks us to reflect on it. It is hinted that Richard has at least some responsibility, even though something akin to despair has influenced his inflexible and authoritative behavior towards Amelia. Richard's domination over his employee not only parallels the superiority of his storyline over Amelia's but also the overarching theme of unequal power dynamics in the global network society portrayed through the film. In this sense, the oneway communication between Richard and Amelia mirrors her later attempts to be listened to by other characters like the Border Patrol agent and the deportation officer. In other acts of communication in Babel, the emphasis on the contemptuous attitude of law-enforcing agents towards a number of distant people -namely Amelia, Santiago and the Moroccan protagonists-hints that there are global grounds for the unfortunate experiences of some characters (beyond those merely attributable to individual wrong choices). For example, the viewer is invited to suture together Amelia's unidirectional conversations and the US State Department's unilateral management of the shooting. Likewise, the abuse of the Moroccan characters is symptomatic of human rights violations against Islamic suspects pursued in relation to the 9/11 events when, after having declared solidarity with the US people in fighting terrorism, the protection of human rights in Morocco was actually weakened. Clearly, the expanded executive powers in a global conflict become the unifying global force binding the suffering of distant others. Babel critiques the fact that the principle of sovereignty should take precedence over the prevention of human suffering. The film calls for a cosmopolitan consciousness that, as Nick Stevenson would say, reminds global humanity of the ways in which we are morally interconnected with one another, while seeking to struggle for a form of politics that aims to accommodate difference (2011: 249). In other words, the management of the shooting incident in the film serves to exemplify how the United States' economic, political and military supremacy facilitated a nation-centered response to the 9/11 attacks, instead of promoting transnational politics based on a more cosmopolitan understanding of the other. In Babel, one-sided preoccupation with security causes unfounded fears of terrorism and brings chaos to the networked, interdependent nation-states all over. For example, Amelia's ill treatment on the border is articulated as a consequence of the war on terror resulting in more severe immigration laws, as part of the global chain of narrative cause and effect. Thus, it can be argued that the United States' one-sided management of the shooting is at the basis of all the plotlines because it is, to a very large extent, deemed responsible for their resolution. Recreating these dynamics, instead of the centerless narratives of other multi-protagonist films, the structure of Babel places Richard and Susan's predicament at the center of the network narrative. The domination and pervasiveness of the tourists' plotline is further highlighted by the two infiltrations of the shooting event in the Tokyo storyline, functioning as the nexus between the two stories. The first intrusion takes place while Chieko is tediously channel surfing, and a news item about the shooting filters into a random succession of local programs. The scene has a key structural function based on certain expectations and responses rooted in the network movies' generic conventions. For the viewers that are familiar with these films, the intersection of characters from different storylines seems inevitable just because we have been following them from the start: the more the narration focuses on their separate lives, the more we expect relevant encounters among them. Then, when people start to meet, even by chance, we feel what Bordwell calls a "satisfying omniscience" (2006: 99). Since the first intrusion in the TV news linking the tourists' and the Tokyo storylines is the first indication that this narrative strand is attached to the multi-protagonist structure, it makes us experience the rewarding omniscience that Bordwell describes. This reward validates Richard and Susan's plotline as central for its ability to provide the evidence that helps us make sense of the film's structure and plot. A similar intrusion is repeated later in the Tokyo plotline, further reinforcing the role of Richard and Susan's narrative as pervasive and a determining factor in the film. While the Japanese police officer is reading the hand-written note that Chieko has given him in the previous fragment of the Tokyo storyline, we see Susan's face on the Japanese international news and we learn about the outcome of Richard and Susan's story. The contrast between the secrecy of Chieko's note, which to our frustration we are never able to read, and Richard and Susan's conspicuously happy ending reinforces the hypothesis that, in Babel's unbalanced structure, the US protagonists are more worthy of attention than any other characters in the movie. Yet, the officer's uninterested look at the television set, together with Chieko's look of boredom while channel surfing earlier in the narrative, problematizes the omnipresence of the shooting incident and the prominence given to its protagonists. The blatant infiltrations of the shooting incident in the Japanese news is a representation of what Castells calls "the power of the switch", or the ability of dominant actors and institutions to connect different networks, promoting their cooperation by sharing common goals (2009: 45, 51). In Babel, the pervasiveness of the shooting -which points to post-9/11 paranoia about security and the subsequent military operations-and its prominence in the media is a representation of this logic of power. The power of the switch between the security network and the comprehensive media networks resides in its apparent capacity to suppress time -as evoked by the random succession of programs in Chieko's channel surfing scene-and in the capability of the shooting event to obliterate space. The subordination of the Moroccan characters that inhabit the periphery of the network society is visually enhanced when the shooting permeates through the Japanese news across a rapid, random succession of local programs. The Moroccan characters' faces do not fit in and become defamiliarized inside Chieko's bedroom, replete as it is with her personal belongings and pictures. The news beams Yussef and Abdullah's close-ups to this digital tapestry on the Japanese TV, visually representing the space of flows, "made of places connected by electronically powered communication networks through which flows of information […] circulate and interact" (Castells 2009: 34). Notably, Yussef and Abdullah's local selves are only global when they become secondary actors in the news of Susan's shooting. Their identities are unimportant until they are linked to the presumed terrorist attack of an 'American' tourist. The film emphasizes their insignificance even more when, later in a different sequence of the Tokyo story, the TV news narrates a 'happy ending' for the US citizen's narrative strand, while ignoring the fates of Yussef and Abdullah. Yet, since the movie has previously invited us to engage with the disgrace of the humble Moroccan characters, it also calls our attention to the subordination and the oblivion affecting the lives of the people who are peripheral to the network society. The way in which the film constructs temporality also contributes to Susan and Richard's prominence. As has already been mentioned, Deleyto and Azcona see the film's narration as simultaneously governed by two types of temporality: traditional time and timeless time. They argue that the film's temporal arrangement mirrors timeless time when chronological time is suppressed, and sequencing is cancelled and reversed. Timeless time is exemplified by the links between fragments, evoking a sense of immediacy between events happening in remote places (2010: 50-52). I want to show that timeless time is also marked by the recurrent events connecting narrative strands -Richard's telephone calls to Amelia, and the double intrusion of their narrative into the Tokyo plotline-and that this also contributes to making Richard and Susan's strand more pivotal. As has been mentioned earlier, the repetition of scenes is a generic clue that marks them as highly informative, encouraging us to think about interweaving meanings or building structural hypothesis about the network organization of the film. Furthermore, the repeated scenes in Babel give us information about the actual temporal order between the different storylines. For example, the telephone calls between Richard and Amelia reveal in retrospect that the Mexican story takes place five days later, chronologically starting after Susan has been evacuated from Tazarine and gone into hospital, and not simultaneously, as the actual arrangement of segments seems to indicate. Similarly, in the Tokyo storyline, the TV news makes us realize that this has been brought forward with respect to the action set in Morocco. After the segment in which we see Abdullah and Yussef's faces on Chieko's television, the Moroccan segment that follows shows the kids hiding the rifle under a rock in the Atlas Mountains (in Yussef and Abdulah's plotline the Moroccan goatherd and his sons have not been captured by the Moroccan police yet). In Babel's arrangement, the events on the TV news in Tokyo are broadcast prior to their actual happening in the Moroccan strand. Hence, the recurrent, binding scenes prove to be focal in that they raise awareness about the temporal structure of the film, based on timeless time: they disrupt previous hypotheses about the film's temporal construction. Since those pivotal scenes revolve around the shooting, they further reinforce the preeminence of this event, and the centrality and omnipresence of Richard and Susan's storyline. Therefore, Richard and Susan's relevance and domination in the network society run parallel to the structural supremacy of their storyline and its evocation of timeless time because in the film, as in the network society, timeless time indicates power. For Castells, timeless time is the result of the annihilation of time in the networks of the space of flows, and dominant functions are organized in networks that belong to a space of flows, which ties them up around the world (2009: 20, 34). In Babel, the dominant position of Richard, Susan and the US State Department in the aftermath of the shooting is symptomatic of timeless time, especially when the introduction of dialogue is not synchronized with the matching shots. This is most obvious when telecommunications are involved, for instance, when the voice broadcasting the news is heard before correlative images appear, overlapping with the previous shot. In another example, before Susan is evacuated, we can hear a dialogue from a telephone conversation between Richard and somebody from the US State Department. The metallic voice abruptly overlaps with an extreme close-up of Richard and Susan as they come to terms with their past in the intimate space of Anwar's (Mohamed Akhzam) humble home. This shot is followed by a series of quick shots frantically portraying Susan's evacuation in a helicopter while the voice at the end of the line announces that a helicopter should arrive soon and Richard desperately asks: "how long?" He saturates his time to the limit, struggling to stop the biological time that governs Susan's pulse and imposes a temporal limit on her life. In another sequence in Tazarine, the chronological sequence is suppressed when Richard's authoritative voice, demanding from a Moroccan Police Officer an ambulance "now", is previous to the men's actual meeting, while the officer is still seen approaching Anwar's house. By stressing Richard and Susan's privileged status as white, wealthy, United States citizens in comparison to other characters and the centrality of their narrative strand, Babel speculates about and criticizes unequal relations of power across nations and the distinct consequences across borders. The interest that Richard and Susan arouse is underlined by the use of visual and acoustic contrasts and parallelisms. In the closing section of the film, we see the barren Atlas Mountains in Morocco, where the frightened, unarmed, teenage Ahmed has been shot dead by the Moroccan Police. Yussef stares at his brother's body while it is being removed, a long shot zooming-in to a close-up on Yussef emphasizing that he is virtually the only witness of the killing, that Ahmed has died anonymously and unnoticed. In a brief flashback, Yussef nostalgically recalls happy moments playing with his brother in the wind. The music becomes softer, slows down and almost stops, evoking the void left by Ahmed. The motif of the wind that allows the boys' innocent play in the flashback visually connects with the next shot, narrating Susan's evacuation from Tazarine, the wind now produced by a Red Cross helicopter. Hence, the sad meanings associated with the natural wind of Ahmed and Yussef's game contrast with the meanings of hope but also inequality associated with the powerful artificial wind produced by a helicopter which will save Susan's life. The inescapable strong wind spread by the Red Cross global network blows mercilessly over the anonymous Tazarine bodies, humbly bending down as they try to protect themselves from it. The quick shots render endless examples of similar gestures of people covering their eyes with their hands in order to protect them from the unyielding, penetrating dust, its mighty pervasiveness stressed by the incisive repetition of a few staves from the soundtrack. This sequence dramatizes the overwhelming of the local by the global. At the same time, the music repeats itself in a spiral of increasingly higher volume, indicating that this is the climax of the film. The media emphasize Susan's nationality suggesting that she will be saved because so many efforts have been devoted to this end, given that she is a privileged citizen from the core of the global security network. At the opposite end of the scale, Moroccan Abdullah, his sons and his neighbors suffer ill treatment by the Moroccan Police, who are trying to keep under control what has become an international crisis. The wind motif linking the two narratives and the use of framing, together with editing and music, underline the contrast between the unequal outcomes of the two tragedies and the relatively uneven interest that they arouse. These scenes echo others describing Amelia's subordinate position, when she is treated as mere disposable labor by Richard, and later humiliated by the Border Patrol Agent and the deportation officer. The ruthlessness of the Sonoran Desert, metonymically associated with the immensity and severity of the Atlas Mountains in the Moroccan storyline evoke transnational forms of violence in the network society. In Babel, the global reach of the shooting and its consequences problematize the non-cosmopolitan, sovereign control of security in order to fight a complex matter concerning the world at large. The film also suggests that the United States finds legitimation in defining security as the supreme value due its dominant position in the global network society, and to the interpretation of the September 2001 events as an attack on 'America'. It is made clear that the sovereignty of the nation-state and the security of its citizens take precedence over the suffering of strangers. Babel denounces that, in the wake of 9/11 attacks, the nation-state has become a transnational source of legitimate violence in the global network society. As discussed, the management and global reach of the war on terrorism is at the basis of the four storylines. We can argue that what actually connects the four narrative strands is a critique of the sovereignty of one nation-state in matters of security, which is gradually shaped as the cause of subsequent global effects. Hence, the viewer is compelled to interweave, and establish causal connections between, the events following Susan's shooting and its pervasiveness throughout the other storylines. For example, Amelia's tragic border-crossing story is presented as a consequence of the shooting, together with Richard's one-sided and inflexible behavior, echoing the US authorities' management of Susan's wrongly labeled terrorist attack, and the way they actually handled the 9/11 events. This logic is reminiscent of the practices of control and exclusion set up on the US-Mexico border after the 9/11 attacks. These exclusionary protocols go against the notion of "cosmopolitan hospitality", an ethical attitude already proposed by Immanuel Kant in the 18th century as "the right of a stranger not to be treated with hostility when he arrives on someone else's territory" (1991: 105). In Babel, the viewer is compelled to think about the intertwining structural and narrative layers and the events that lead to Amelia's deportation, together with Ahmed's death and the likely terrible ending for his family in Morocco. Multiple connections lead us to deduce that the unfortunate consequences that some characters suffer are not explained as an apparent converging-fates strategy. While some scenes are riddled with coincidence, misled by the circulating-object device of the rifle and the conventionalized role of chance, the functions of the links between storylines, repetitions highlighting varying points of view, and thematic connections emphasize a causal logic grounded on unbalanced global power dynamics. The uneven structure of Babel mirrors positions of domination and subordination enabling one nation-state to define the goals and values in the global war on terror. In conclusion, this analysis deconstructs Babel's deviant structure as a parallel artifact of the film's thematic critique of state-centered politics in the current network society. The multi-protagonist structure metaphorically embodies the power system of the emergent network society, where dominant functions are organized in networks. In consonance with the unequal network society that Babel represents, the centrality and superiority of Richard and Susan's narrative strand resides in its capacity to influence the other three due to its higher interconnectedness -roughly based on the number and nature of its links-and to its networking power, granting a good prospect for programming priorities and values. Babel supports the view that global forms of conflict, including the war on terrorism, pose profound challenges, given the potentiality of the global network society to become the site of conflict. The film defends the cosmopolitan need to interrogate the nation-state as the basic unit of political activity. Instead, Babel promotes more balanced, transnational political practices grounded on a cosmopolitan understanding of humanity at large.

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Exploring Consumer Emotions in Pre-Pandemic and Pandemic Times. A Sentiment Analysis of Perceptions in the Fine-Dining Restaurant Industry in Bucharest, Romania

This research paper aims to analyse how consumer emotions have evolved during the pandemic period in comparison with the pre-pandemic period in relation to restaurant demand in the Romanian fine-dining industry and uses valuable information based on social-media sentiment analysis and content analysis. Focusing on theories of consumer behaviour, the study aims to emphasize how, under the influence of an epidemic crisis caused by an infectious disease, individual behaviour adapts to the "new normal", embracing a series of changes in the preferences, attitudes, and cognitive choice-making processes. The article takes into account a comparative analysis of the consumer emotions between the pre-COVID-19 pandemic period (2010-2019) and the pandemic period (2020-present), based on the online reviews provided by customers for five fine-dining restaurants from Bucharest, the capital city of Romania: The Artist, Relais & Chateaux Le Bistrot Francais, Casa di David, Kaiamo, and L'Atelier. The research was based on two mining analysescontent analysis and sentiment analysis-and explored the emotional intent of words, with the data being collected from TripAdvisor through web-scrapping. The empirical results defined the fine-dining experience during the pandemic as being associated with the quality of the dishes and also with the quality of the service. The overall consumer sentiment in the direction of the restaurants analyzed is positive. The sentiment research found that throughout the epidemic, the consumers' attitudes about restaurants deteriorated. In this sense, consumers seem to be less satisfied with the restaurants' services than before the pandemic. This is another thing that the restaurants had difficulties in when adapting their operations for the pandemic.

Introduction COVID-19 sparked a global public health catastrophe and a series of additional concerns, including an economic downturn, unemployment, and mental instability. The pandemic has affected individuals from all around the world, causing anxiety, stress, worry, dread, repugnance, and poignancy, in addition to the illness [1]. The epidemic has posed an unprecedented challenge to the restaurant industry. Community lockdowns, social distancing, stay-at-home ordering, travel and mobility restrictions, and other strategies to flatten the COVID-19 curve have resulted in the temporary closure of many hospitality businesses and a significant decrease in demand for businesses that were allowed to continue to operate [2]. the in-restaurant dining: the décor of the venue, the setting of the table, the music, the scents, the lighting, the exquisite cocktails, and the show made by the chefs are all defining elements of the luxury dining experience. Customers that visit fine-dining restaurants do not do so only to satisfy their hunger, but to indulge in the fantasy of a narrative that became compromised during lockdown, when all venues were closed to the public. Secondly, plating is a key element in the fine-dining experience. This became an issue during lockdown, because of the chef's inability to maintain the authenticity of the aesthetic of a restaurant by transferring all the different artistic elements from a plate into a delivery cardboard box. Although the consumer sentiment has been mostly analysed during the pandemic [9], to the best of our knowledge very few studies have investigated consumer sentiment from online reviews on the fine dining. This study aims to fill this research gap by using text-mining approaches to explore the evolution in consumer sentiments and to analyse the change in the overall sentiment from the fine-dining industry in both periods. Moreover, sentiment analysis is a technical tool used to track brand and product sentiment in consumer feedback and better understand customer demands and has become a crucial tool for monitoring and understanding client sentiment. However, to the best of our knowledge, no empirical research to date has considered a comparative analysis of consumer emotional responses in the Romanian fine-dining industry in the pre-pandemic and during the pandemic. Furthermore, no sentiment polarity has been explored in either of the two periods. The paper is organised as follows. The section of theoretical development emphasises the most relevant opinions regarding the customer sentiment over time, while the third section is dedicated to the presentation of the data and methodology. The section of empirical results highlights the most relevant findings, and the paper ends with the main implications, limitations, and future directions of the research. --- Theoretical Development 2.1. Impact of the COVID-19 Pandemic on Global Restaurant Dining The pandemic has had a significant impact on all businesses at a global level, with the hospitality industry being one of the most badly hit by the pandemic [10]. Travel restrictions, lockdowns, and stay-at-home orders restricted people's movement by stringent enforcement, causing major disruptions to the industry [11,12]. It has also been estimated that 13.4 million jobs from the restaurant industry could be affected by the ongoing global pandemic [13]. The food service industry is highly vulnerable during epidemic crises because of its high reliance on physical human interaction [4] (p. 3813). In March 2020, in the early stages of the pandemic, the global table-booking website, OpenTable, launched the State of the Industry website to showcase how COVID-19 has affected restaurants worldwide [14]. The study has been ongoing-the data, which are being continuously collected, are based on a sample of over 20,000 restaurants on the OpenTable network and illustrates the number of seated diners from online, telephone, and walk-in reservations or, in other words, the number of customers that dined in restaurants during the pandemic (2020 and 2021) in comparison with the pre-pandemic days in 2019 [14]. The restaurants provide OpenTable with information on their inventory, which has enabled the company to create a detailed and accurate year-over-year comparison, comparing the same days of the week in 2020 and 2021 "to the same day of the week in 2019 (not the same date)" [15]. The data published by the company clearly indicate a significant drop in restaurant bookings at a global level from mid-March 2020, compared to mid-March 2019: 47% on 15 March 2020, to 83% on 17 March 2020, to a dramatic drop of over 99% in only a few days on 22 March [15]. The percentage of over 99% has been recorded since the beginning of May (3 May 2020) and has not gone below 90% since 20 May [6]. Starting from 21 May, the data show a minor improvement. Between 21 May and 5 June 2020, OpenTable reports a growth of nearly 10% (OpenTable [14]). The percentage improved to below 50% in the 3rd semester of 2020 (49% on 31 July 2020), down to an encouraging 26% on 1 September [14]. Over the last trimester of 2020 and the first trimester of 2021, the booking percentages fluctuate dramatically from as low as 10% on 6 September 2020 to as high as 66% on 1 February 2021 [14]. Looking at the state and country division of the data, it becomes obvious how the pandemic has evolved differently in different corners of the world, depending on the number of infected individuals at different times: for example, on 6 September 2020, when the global restaurant bookings was down by an average of 10% compared to 2019, the percentage in British Columbia was as low as 3%, compared to Hawaii at a complete polar opposite, being as high as 95% [14]. Analysing the changes in the relationships between sustainability and the hospitality industry following the onset of the COVID-19 crisis, Jones and Comfort [10] revealed that that the crisis offered a vision of a more sustainable future with the emphasis being more on environmental and social issues, rather than economic gains, but also on collective, rather than individual, approaches to consumption. However, this vision may pose a major challenge for the industry and for many of its traditional customers. Foroudi, Tabaghdehi, and Marvi [16] investigated customer perceptions of the shock of the coronavirus pandemic, focusing on the influence that it has had on their emotions, as well as how all these emotions could impact the future desire to visit restaurants. The study revealed that trust is the foundation on which the hospitality industry rests, and that the transformation of the restaurant business needs the enhancement of localization strategies, practices, and performance. Based on empirical evidence, Gupta and Sahu [17] proved the positive role of innovative training programmes in the hotel industry in India to support guests and employees during the COVID-19 pandemic, boosting consumer confidence and enhancing their intentions to return. Mason, Narcum, and Mason [18] offer an innovative perspective, from an empirical point of view, on shifts in consumer decision-making behaviors, collecting data for US consumers during pre-pandemic and post-pandemic times and concluding that this sanitary crisis has dramatically altered the consumer needs, shopping behavior, as well as the post-purchase satisfaction level. There is a public hesitance towards eating out post-COVID-19 and the foodservice providers need to redesign their strategies in order to encourage and attract customers [19]. Consumer behaviour will continue to reshape the restaurant industry. In the case of restaurants, the speedy adoption of new digital ordering systems, delivery, and drive-thru innovations will continue to be vital after the pandemic and will require several changes by restaurant operators. However, despite all the industry efforts, returning to pre-pandemic levels in dining-in trends is unlikely. Restaurant formats will look different after the pandemic. With changing consumer behaviour regarding digital ordering, as well as the drive-thru and delivery cultures, it is not surprising that several restaurant chains have introduced new restaurant formats [20]. The future of the hospitality and tourism industries in the COVID-19 era is currently uncertain; therefore, substantial research is required to evaluate how the industry might recover and survive the "new normal" of the COVID-19 world [21]. --- Impact of the COVID-19 Pandemic on Local Restaurant Dining in Romania Social distancing rules have affected economies by reducing the quantity of labour. The most affected work sectors are arts and leisure, hotels, and restaurants, followed by agriculture and business services, activities in which workers rarely use a computer [2]. As previously argued, the food service industry is one of the most susceptible to epidemic disease, because of its high reliance on "human interaction and gatherings" [4] (p. 3813). Prior to the COVID-19 crisis, the hotel and restaurant industry in Romania was blooming; it had a total of 40,000 entirely Romanian-owned companies, with a total turnover of EUR 5 billion, and an estimated 400,000 employees, representing a total of 10% of the total employees from the private sector (around 190,000 direct employees and an estimated 210,000 employees working in related industries, such as product suppliers, manufacturers, and service providers) [22]. It is crucial to acknowledge not only those directly employed by the restaurant industry but also those working in related industries in order to understand how the crisis caused by the COVID-19 pandemic has not only led to the collapse of restaurants but has also had a crucial impact on a series of other stakeholders in the food service industry, such as the state, the customers, the suppliers, the producers, and the banks [23] (p. 816). According to statistics released by the Romanian Hotel and Restaurant Association (HORA), Romania was also severely affected by the pandemic. In 2020, the total turnover of the hotel and restaurant industry registered a total decrease of an astonishing 70% compared to the previous year, with over 40% of local businesses being forced to shut down [22]. Out of these, only 10% are anticipated to reopen after the pandemic, with 30% (approximately 10,000 restaurants) remaining permanently closed due to bankruptcy [24]. Forced by the circumstances, the businesses from the food industry sector have adapted their business model in order to survive the new world order [23]. --- Consumer Perceptions in the Context of the COVID-19 Global Shock Unavoidably, under the influence of a global crisis caused by an infectious disease, the individual's behaviour will adapt to the new context-the world during and after the pandemic, which will give birth to a series of changes in the preferences, attitudes, and cognitive choice-making processes of a population that is increasingly reliant on online ordering and home isolation [4]. The previous section of the Literature Review focused on the impact, from an industry perspective, that the COVID-19 epidemic crisis has had on restaurant demand. At this point, the emphasis is going to shift towards consumers and the key role that the COVID-19 crisis has played in reshaping their consumer sentiments. The question is how does the shock of the pandemic influence customer beliefs, and how could those beliefs have an impact on their anticipated emotions-both positive and negative-and affect their future willingness with regard to dining in restaurants [16]? People's beliefs inform their behavioural intentions [25]. COVID-19 has significantly impacted people's emotions, meaning that it has had undeniable consequences for individual happiness and achievement (Johnson et al. [26]). In their decision-making processes, people's choices are often driven by the anticipation of their feelings regarding the upcoming results [27]. Human emotions have been divided into two distinctive categories, located at polar opposites: positive anticipated emotions, referring to an individual's successful attempt at achieving a goal, and negative anticipated emotions, referring to an individual's inability to achieve their target [28]. During the pandemic, there has been a decline in positive emotion and a considerable rise in negative emotions, such as anxiety and depression: studies reveal that consumers have become worried about their personal health, as well as the health of their families and loved ones, and concerned about whether they will continue to be able to provide for their basic needs, as well as their loss of freedom [29]. These common concerns have manifested themselves in different ways as consumers, influenced by internal (psychological) and external factors, have gradually adopted new consumption patterns. People are no longer interested in holidays and various other leisure activities, including in-restaurant dining, shifting their entire focus onto protecting themselves and their loved ones from illness [30]. The prolonged rise in negative emotion is not only damaging to societies and economies, but also has a damaging impact on an individual's immune system [31]. Jim Samuel et al. [32] addressed an issue of public sentiment, which resulted in increased dread and negative emotion, while Yin et al. [33] proposed a framework for analysing the topic and sentiment dynamics caused by COVID-19 from a large number of Twitter postings. A hybrid technique to finding sentiments on ordinary tweets with polarity calculations was developed in a machine-learning-based sentiment analysis [34]. The polarity score was calculated using three sentiment analysers. Using Twitter data, Ahmed et al. [1] proved that both the users' involvement and their sentiments vary after a particular time. Tardin [35] evaluated the impact of COVID-19 on the Brazilian food service industry, using topic modelling based on online reviews and identified in the pandemic period four of the most relevant topics describing the customer relationship with restaurants: 'delivery', 'employees', 'experience', and 'waiter service'. Using the sentiment analysis, the average value of sentiment of the total sample was 1506, highlighting that the overall sentiment of the consumers towards the restaurants is positive. For the pandemic period, the average is lower than the previous periods, and it becomes clear that the sentiment toward the restaurants reduced in the pandemic period. This aspect has been seen as a reflex of the lack of experience of the restaurants with delivery systems or that the restaurants are no longer capable of delivering the same value to the consumer. The health belief model (HBM) is a theoretical framework used by scholars to "explain and predict health behaviours in public health research" [4]. The model describes how the preventive behaviour of individuals towards illness "can be explained by their risk perceptions and health beliefs" or, in other words, how individuals will act to protect themselves from illness [29] (p. 568). The HBM is positively influenced by three factorsthe perceived susceptibility (people will take measures to protect themselves from a disease if they believe themselves to be vulnerable to a specific condition), the perceived severity (people become wary of a disease "if they believe it would have serious consequences" upon their wellbeing), and the perceived benefits (people become cautious and take preventive measures, under the belief that these would reduce the vulnerability or severity of the disease)-and one negative factor-the "perceived barriers or costs" (factors that prevent individuals from taking the health measures that will protect them) [4] (pp. 3812-3813), [29] (p. 568). The positive factors are visible in the context of consumer behaviour in relation to restaurant dining during the COVID-19 pandemic. Perceived susceptibility captures the individual's perceived risk of becoming infected with the SARS-CoV-2 virus; perceived severity captures the individual's perception of the severity of the COVID-19 infection; and the perceived benefits refer to people's awareness that avoiding restaurant dining will reduce their risk of infection [4] (p. 3813). All of these internal cues to action have also been shaped by external cues, such as risk communication via different mass media channels, health marketing campaigns, and the restrictions enforced by public authorities-full lockdown being one of the most drastic measures taken during the COVID-19 pandemic, aimed at encouraging social-distancing and limiting human interaction and, by doing so, minimising the spread of such a highly contagious virus [4,24]. Ernst and Young have created the "EY Future Consumer Index", a study based on sentimental analysis of individuals in five key markets that showcases how the COVID-19 pandemic has re-shaped consumer behaviours, creating new consumer segments [26]. The study identifies four major consumer groups that have emerged during the pandemic: save and stockpile (35% of consumers participating in the study): those that are not so much concerned about the present, but worried about the well-being of their families and the long-terms effects that the pandemic will have on their lives; cut deep (27%): those individuals, who have been most affected by the pandemic, leading them to be the most pessimistic about the future and causing them to reduce their financial spending across all categories; stay calm, carry on (26%): people that have not been directly affected by the pandemic and, as a result, have not changed their spending habits; last, but not least, hibernate and spend (11%): consumers that, in spite of being most worried about the pandemic, have been in the best position to deal with it, having the financial power to spend more across all different categories [36]. The E and Y [37] report revealed that consumers worldwide are significantly more concerned than they were before the pandemic, arguing that we are witnessing the birth of the "Anxious Consumer." When looking at Chinese consumers, the study pointed out that they were able to return to their "normal life", but in order to facilitate the adaption to this new reality, companies needed to significantly accelerate digital investment in operations and experiences that helped make the consumers feel safe. Based on Yelp online reviews from January-June 2020, Luo and Xu [8] found out that customers elicited a higher level of positive feeling for service in March compared to the previous two months; a potential reason might be that the customers tended to take a restaurant's precarious position into account before evaluating the service quality of a restaurant. Despite the fact that restaurants reopened in May with capacity limitations and social-distancing guidelines, patrons were found to have a generally good view of their eating experiences. In June, sentiments regarding food and place hit an all-time high, indicating that the restaurants were doing an excellent job of maintaining consistency in their performance criteria. One potential recommendation to boost the customers' good feelings about 'location' might be if the restaurateurs provided ample parking to accommodate the customers. Furthermore, having outside seating may make it easier for consumers to locate the restaurant and eat outside in the fresh air. Although the pandemic has had the greatest impact on full-service restaurants, altering societal attitudes and commercial environments will permanently transform all the different restaurant categories. Rather than the establishment of a new business model, the coronavirus may have the most dramatic influence on existing operators' services. Hospitality businesses are expected to make substantial changes to the way they operate in the COVID-19 business environment in order to ensure employee and customer health and safety and enhance the customers' willingness to patronize their businesses [38]. The phantom kitchens would be the food-truck counterpart of COVID-19 (i.e., a new sector pushed by a catastrophe). Hundreds of ghost kitchens have emerged in the last year, either as part of established restaurant chains or as stand-alone businesses, estimated to reach an almost USD 1 trillion commercial potential by 2030 [39]. Operators from the limited, as well as the full-service, spectrum are looking forward to a return to dine-in business. Even models that place a large focus on in-person encounters claim that customer demand for off-premises services will persist long beyond COVID-19. In the restaurant sector, different types of restaurants will soon have less to do with operations and more to do with establishing a specific feeling and brand identity. It has now become mandatory to break down what dining really is, paying particular attention to a guest's needs and their willingness to have whatever their heart desires, whenever they desire it. Many of the safety precautions implemented as a result of the pandemic will continue whenever businesses resume, and the fine-dining sector will maintain, and potentially extend, its focus on outdoor eating [39]. Fine-dining establishments that are still closed, have limited visitor counts, or do not provide delivery/to-go options are under the most strain. Many of these concepts are still seeing 30% to 40% same-store sales drops and will likely only see a modest rebound over the next few months as macro forces begin to replace COVID-19 worries, and customers continue to be wary of dine-in experiences [20]. According to the preliminary findings of longitudinal research undertaken by the editorial team of the Journal of Hospitality Marketing & Management, a big percentage of people (more than 50%) are unwilling to eat in a restaurant right away [40]. The pandemic is far from over, and if the previous year has taught us anything, it is that no amount of preparation can prevent what is yet to come. It is too early to predict how the foodservice industry will develop, how restaurants will define themselves and differentiate themselves from competitors, and what consumer expectations will be. Whatever the case may be, the sector will rebound with a diverse range of cuisines, styles, service methods, and hospitality. The power to adapt is what will maintain the sector's long-term survival. From an industry perspective, restaurants, which are highly reliant on face-to-face human interaction, have been forced to reconsider their marketing strategies and adapt to the "new normal", engaging their customers in virtual communities through social media platforms [41]. KAIAMO, known as the ultimate fine-dining culinary experience, renowned for luxury and sophistication, as well as the artistic plating and exquisite taste, was one of the first restaurants in Bucharest to respond to the changes in consumer behaviour and adapt their business model to the new context, shifting from luxurious in-restaurant dining to dishes that are suitable for take-away and delivery. Soon after the instauration of lockdown in Romania, the restaurant used their Instagram page to announce that the brand is now "Reborn. Refined. Redefined" [42]. Soon after the announcement, the new aesthetic of the brand became visible on Instagram. KAIAMO launched Kaiamo Kanteen, which is, as the word "canteen" suggestively indicates, a less artistic, more realistic version of the original pre-pandemic restaurant, serving dishes from a new menu that focuses less on presentation and more on serving bigger portions at more affordable prices. In other words, there has been a notable shift in their strategy, from unaffordable luxury to "deliverable" dishes, from artistic presentation to comfort food, which is much needed during difficult times. The new culinary aesthetic, as well as the focus on the virtual engagement of customers through online communities, has been visible on the Kaiamo Kanteen Instagram page from the outset of the pandemic: the photos clearly showcase comfort food, instead of artistic dishes, and customer reviews are posted to emphasize the restaurant's ability to empathize with the people during challenging times. Moreover, the restaurant also partnered with the delivery companies Tazz by Emag, Food Panda, and Glovo to offer home-delivery services, which is something that the "pre-pandemic" KAIAMO did not provide to their clients [42]. The Artist, another renowned fine-dining restaurant analysed in the present paper, is another example of a business that has adapted to the new customer behaviour. As a result of the lockdown, the restaurant launched a new menu, specifically designed for home delivery. Moreover, a special home-delivery Christmas menu has also been designed, aiming to bring the luxury experience specific to their restaurant into the safe environment of their customers' homes [43]. The concept was launched under the name of "The Artist @ Home" and, just as in the case of KAIAMO, it has been promoted on the restaurant's Instagram page, once again proving that businesses have understood the new customer behaviour and adapted their "pre-pandemic" business model to serve the "pandemic" needs [43]. KAIAMO and The Artist are proof that luxury restaurants have found ways to manage the crisis caused by the pandemic by adopting their business models to the new rules and regulations, as well as to the more hesitant and worried behaviour of their customers. [8,44] Given that the dark cloud of the pandemic is still ongoing, the recommendation based on the findings of this research is that all fine-dining restaurants should embrace adequate mechanisms in order to survive in the foreseeable future-adaptation of menus for homedelivery and engagement of customers through online communities being two of the recommended survival tools. --- Materials and Methods In order to explore how the customer sentiment evolved over the period, the analysis was based on the online reviews collected for 5 fine-dining restaurants from Bucharest, using the following criteria: the top 100 Restaurants in Bucharest and those ranked $$$$ on TripAdvisor, namely The Artist, Relais & Chateaux Le Bistrot Francais, Casa di David, Kaiamo, and L'Atelier. The sample of reviews extracted from TripAdvisor through webscrapping is formed from a total of 1106 reviews, the earliest review being from 19 May 2010, while the latest dates from 8 March 2021. The timeframes are considered to be the periods from 2010-2019 (for pre-COVID-19 pandemic) and 2020-the present (during the pandemic). The research will take into account a comparative analysis of consumer sentiment for these two periods. The sample of reviews extracted from TripAdvisor through web-scrapping consists of a total of 1106 reviews for five restaurants, the earliest review being from 19 May 2010, while the latest dates from 8 March 2021. The evolution of the total number of reviews per month highlighted a continuous increase in the number of reviews from 2010 until the end of 2018, with, at the end of 2018, a sharp decline for the last period (Figure A1 from Appendix A). The distribution of reviews per restaurant revealed that Casa di David is the oldest luxury restaurant while Kaiamo is the newest restaurant, with reviews starting from 2018 (Table A1 from Appendix A). Analysing the frequency of reviews per restaurant, we can mention that most of the reviews for the whole period were acquired by "The Artist", with almost 400 reviews, followed by "Relais & Chateaux Le Bistrot Francais" and "Casa di David"; at the opposite side we encountered "Kaiamo", a relatively new restaurant. Comparing the consistency of reviews before the pandemic (until 2019) and during the pandemic (2020-March 2021), the research reveals a sharp decline in client reviews as a result of the strict measures imposed by the pandemic-measures that also included closing down restaurants. When customers leave feedback-whether it is to complain or leave a flattering review-there is always an underlying emotion. Having access to the right data at the right time can be a game-changer when it comes to making decisions that boost customer satisfaction and loyalty. Online reviews are still as crucial as ever during COVID-19. During the COVID-19 crisis, timely online reviews might assist potential customers in getting the most up-to-date information about how a restaurant is running. A single poor review might discourage potential customers, making it much more difficult for a food business to survive the COVID-19 crisis. Online reviews have become one of today's most powerful marketing tools, influencing customer behaviour with an astonishing 91% of 18-34-year-old consumers claiming that they trust online reviews as much as personal recommendations [45,46]. Consumer online reviews play a critical role (Del Chiappa et al. [47]; Liu and Park [48]) and have important consequences from a managerial point of view. Customers become "objective voices" (Vermeulen and Seegers [49]), with more than 75% of consumers taking peer reviews into account when planning a holiday (Xie et al. [50]; D'Acunto, Tuan and Dalli [51]). A study by D'Acunto et al. [51], based on a sample of TripAdvisor reviews, analyzed the usefulness of the reviews. From the customers' perspective, online reviews empower them to express their opinion, providing social proof to other potential clients [45]. From an industry perspective, the customers' online reviews can have either a positive or a negative impact on their business. On the one hand, positive reviews have the power to increase customer trust and improve customer experience, whilst on the other hand, negative reviews have the power to reduce the customer base, with 94% of consumers agreeing that a negative review has convinced them to avoid using a specific business [45]. Published literature clearly reveals a division when it comes to the reliability of online customer reviews. On the one hand, the role of customer reviews as rich material is acknowledged, complementing or substituting for existing information sources, whilst on the other hand, they can express the subjective opinion of a limited sample of customers [45]. Online reviews are an effective word-of-mouth marketing strategy in the digital age, providing outside perspectives on products and services. While positive reviews can drive revenue and build a trustworthy reputation, negative reviews, or the absence of reviews, can do the opposite. Understanding the importance of reviews, as well as how to leverage them to boost the business can be a critical way to get ahead in the competitive e-commerce marketplace and be positioned miles ahead of the competition. Therefore, even if there are pros and cons, we decided to use the online reviews from TripAdvisor as the basis for this research paper. A study conducted in partnership with Ipsos MORI polled over 23,000 TripAdvisor users from 12 markets, "across hotel, restaurant and attraction reviews, revealing that more than four out of five (85%) participants report that the reviews they read on TripAdvisor accurately reflect their experience, and 86% agree that TripAdvisor makes them feel more confident in their booking decisions [52]. Moreover, the results of Chua and Banerjee (2013) supported the same conclusion [53]. The research methodology combines elements from two relevant mining analysescontent and sentiment analyses-in order to explore customer sentiment in both the pre-pandemic and the pandemic periods, highlighting which words of emotional and opinion content are important to customers, analysing how consumer emotions evolved in these two periods in relation to restaurant demand in the Romanian fine-dining industry. On the one hand, content analysis is a technique that extracts worthwhile information and represents a solution for the unstructured data. It represents a method of systematic research designed to analyse and infer text, exploring the meanings of different words, themes, or concepts based on word-cloud analysis. Word clouds are visualizations that display words and word frequency to gain an understanding of what consumers specifically like or dislike about a location. On the other hand, the sentiment analysis revealed the emotional tone behind the words used to understand the attitudes, opinions, and emotions and extracted insights from the social data. When human readers approach a text, the understanding of the emotional intent of words is used to infer whether a section of text is positive or negative. The text is considered as a combination of individual words and the sentiment content of the whole text as the sum of the sentiment content of the individual words. Certain emotions are strongly related to specific words. In the sentiment analysis, the proportions of the words that have positive connotations or negative connotations, or are neutral, present interest, and an exploration is made of how many words in a text are also in a predefined list of words associated with a certain sentiment. Within the paper, we have applied sentiment analysis using unsupervised learning, in which the content is characterized by given words or dictionaries; we used the AFINN lexicon dictionary in R software, developed by Finn Årup Nielsen, for a list of words which consists of 2477 coded words and word scores ranging from -5 (very negative) to +5 (very positive). As preliminary steps, AFINN preprocessed the text by removing the punctuation and converted all the words to lower case before analyzing it. One of the drawbacks of using the raw AFINN score is that the longer texts may yield higher values simply because they contain more words. To avoid that issue, we divided the score by the number of words in the text. In order to explore how customer sentiments evolved during the pandemic and to explore potential changes over time, the first step implied the computation of an average sentiment score for both periods, pre-pandemic and pandemic, using the formula: Average sentiment score = Sum(positive) -Sum(negative) Total Words Count (1) Each review was given a sentiment score based on how positive or negative the review was. The final sentiment score ranged between -5 to 5, with the assigning of the following sentiment categories: neutral for a score ranging from -1 to 1, positive for a score ranging from 1 to 2.5, very positive for 2.5 to 5, negative for a score ranging from -1 to -2.5, and very negative from -2.5 to -5. In the second step, based on the values of the average sentiment score, we applied the Welch two-sample t-test in order to highlight reliable change in the average sentiment in both periods, as well as a two-sample, difference-ofproportions t-test to highlight significant differences in terms of positivity and negativity between both periods. The sentiment analysis can experience some difficulty in understanding a few intricacies of human language-polarity, sarcasm, emojis, comparative sentences, or double negatives-referring to many in-between terms, such as "not so bad" or "kind of good", which imply average emotion (mid-polarity), and usually, the sentiment analysis fails to pick up on these emotions. Moreover, sentiment analysis is not able to detect any sarcasm in the comments, it being difficult for the tool to detect the real context behind the sentence, or a double negative, which turns the sentence into a positive. All analyses were developed using libraries tm, tidyte xt, quanteda, tidyverse, corpus, textmineR, tidyr, Rweka, wordcloud2, igraph, ggraph, widyr, stats, ldatuning, stm, readr, readtext, reshape2, ape, and dendextend in R statistical software [54]. --- Empirical Results --- Empirical Results of Content Analysis Customers frequently leave reviews to describe their experiences, which can be key indicators of what specific problems a business is having. Being able to comprehend thousands of reviews through customer sentiment analysis can help identify patterns and behaviors to help improve a restaurant's performance. In order to identify the ways in which customers describe their fine-dining restaurant experience in general as well as in the pre-pandemic and during the pandemic (RQ1), the word-cloud analysis revealed that the most common words characterizing all finedining restaurants from our sample are: "food", "restaurant", "service", "Bucharest", "experience", "menu", "wine", and "excellent" (Figure 1). The sentiment analysis can experience some difficulty in understanding a few intricacies of human language-polarity, sarcasm, emojis, comparative sentences, or double negatives-referring to many in-between terms, such as "not so bad" or "kind of good", which imply average emotion (mid-polarity), and usually, the sentiment analysis fails to pick up on these emotions. Moreover, sentiment analysis is not able to detect any sarcasm in the comments, it being difficult for the tool to detect the real context behind the sentence, or a double negative, which turns the sentence into a positive. All analyses were developed using libraries tm, tidyte xt, quanteda, tidyverse, corpus, textmineR, tidyr, Rweka, wordcloud2, igraph, ggraph, widyr, stats, ldatuning, stm, readr, readtext, reshape2, ape, and dendextend in R statistical software [54]. --- Empirical Results --- Empirical Results of Content Analysis Customers frequently leave reviews to describe their experiences, which can be key indicators of what specific problems a business is having. Being able to comprehend thousands of reviews through customer sentiment analysis can help identify patterns and behaviors to help improve a restaurant's performance. In order to identify the ways in which customers describe their fine-dining restaurant experience in general as well as in the pre-pandemic and during the pandemic (RQ1), the word-cloud analysis revealed that the most common words characterizing all fine-dining restaurants from our sample are: "food", "restaurant", "service", "Bucharest", "experience", "menu", "wine", and "excellent" (Figure 1). Analysing the distribution of the most positive and negative words before and during the pandemic, the following can be highlighted (Figure 2): Analysing the distribution of the most positive and negative words before and during the pandemic, the following can be highlighted (Figure 2): --- • the words characterizing the fine-dining restaurants pre-pandemic have been "food", "service", "restaurant", "Bucharest", "experience", "menu", and "wine"; • during the pandemic, it can be observed that even if the restaurants registered a sharp decline in the total number of reviews because of the restrictions and lockdown, the words characterizing the fine-dining restaurants remain almost the same, namely "food", "restaurant", "service", "menu", "dishes", "experience", "Bucharest", "tasting", "staff", or "chef" Therefore, the fine-dining experience in a pandemic is more likely to be associated with the quality of the dishes and also with the quality of service. --- The Empirical Results of Sentiment Analysis Sentiment analysis provides a way to understand the attitudes and opinions expressed in texts. Analysing the whole sample of reviews, it is possible to highlight that the most common negative word is "expensive", followed by "disappointed", "dessert", "bad", "pricey", and "cold" (Figure 3). --- The Empirical Results of Sentiment Analysis Sentiment analysis provides a way to understand the attitudes and opin pressed in texts. Analysing the whole sample of reviews, it is possible to highlight most common negative word is "expensive", followed by "disappointed", "d "bad", "pricey", and "cold" (Figure 3). At the opposite pole, there are the most common positive words for the ent ple, namely "excellent", "nice", "amazing", "recommend", "delicious", "friendly fect", "beautiful", "wonderful", or "fine" (Figure 3). In order to respond to RQ2, a comparative analysis of the word clouds bef during the pandemic in terms of the most common positive and negative words that (Figure 4): --- • if before the pandemic, the most common negative word was "expensive", f by "disappointed", "dessert", "bad"; during the pandemic these were repl "bad", accompanied by "dessert", "rude", and "steep"; • in terms of the most common positive words, before the pandemic these w cellent", "nice", "amazing", and they remained the same during the pa ("nice", "amazing", "wonderful", "excellent"). At the opposite pole, there are the most common positive words for the entire sample, namely "excellent", "nice", "amazing", "recommend", "delicious", "friendly", "perfect", "beautiful", "wonderful", or "fine" (Figure 3). In order to respond to RQ2, a comparative analysis of the word clouds before and during the pandemic in terms of the most common positive and negative words reveals that (Figure 4): --- • if before the pandemic, the most common negative word was "expensive", followed by "disappointed", "dessert", "bad"; during the pandemic these were replaced by "bad", accompanied by "dessert", "rude", and "steep"; • in terms of the most common positive words, before the pandemic these were "excellent", "nice", "amazing", and they remained the same during the pandemic ("nice", "amazing", "wonderful", "excellent"). It is also worth investigating how customer emotions evolved in terms of the most common words contributing to the positive and negative sentiments in the pre-pandemic period vs. the pandemic period (Figure 5) in order to respond to RQ3. By doing so, one can clearly observe that prior to the pandemic the most common positive words were "nice", "excellent", and "amazing" and that they preserve their meaning even during the pandemic. If before the pandemic we identified words such as "expensive", "disappointed", "dessert" as the most commonly used negative words, during the pandemic we found words such as "bad", "terrible", and "steep". From the positive word clouds, it can be observed that the fine-dining experience continues to be defined by the same attributes, with the customers acknowledging that the experience is nice, excellent, and amazing, as those are the largest words in the cloud. However, knowledge gained from the negative word cloud may be more insightful. Before the pandemic it can be observed that some of the larger words include "expensive", "disappointed" and "dessert". If people are using the word "dessert" in their reviews, it may indicate that many customers experienced some issues with the dessert, being disappointed by the quality or finding it too expensive. During the pandemic one can observe an accentuation of the negative feeling, emphasized through the usage of words such as "bad", "terrible", "steep", also revealing issues related to prices. Furthermore, in order to respond to RQ4, a customer sentiment score was built based on how positive or negative the reviews were. In order to explore whether the sentiments of the customers evolved over time, the distribution of the average sentiment score for both periods, as well as the evolution of the sentiment score over time, together with the empirical results of the Welch two-sample t-test were explored. Thus, the modal sentiment (the most frequent sentiment), even if characterized by a small decrease, was slightly positive from an average of 2.03 in the pre-pandemic to almost 1.49 during the pandemic, revealing a decrease in the degree of positivity (Figure A2 from Appendix A). An analysis of the evolution of the customers' sentiments pre-pandemic, as well as during the pandemic, reveals the same decrease in the positivity (Figure 6). The results are in line with the conclusions of Tardin [35], highlighting that the overall sentiment of the consumers towards the restaurants is positive and that the sentiment towards the restaurants reduced in the pandemic period, especially with regard to the lack of experience of the restaurants with delivery systems or to the restaurants not being capable of delivering the same value to the consumer. The empirical results of the Welch two-sample t-test (Table 1) reinforced the same conclusion of a true statistical difference in the average customer sentiment across both periods as the probability of the Welch t-test was smaller than the 5% significance level. demic, reveals the same decrease in the positivity (Figure 6). The results are in line with the conclusions of Tardin [35], highlighting that the overall sentiment of the consumers towards the restaurants is positive and that the sentiment towards the restaurants reduced in the pandemic period, especially with regard to the lack of experience of the restaurants with delivery systems or to the restaurants not being capable of delivering the same value to the consumer. The empirical results of the Welch two-sample t-test (Table 1) reinforced the same conclusion of a true statistical difference in the average customer sentiment across both periods as the probability of the Welch t-test was smaller than the 5% significance level. Whether this difference is due to more positivity towards the pre-pandemic or more negativity towards the pandemic can be determined using the two-sample difference-ofproportions t-tests. (Table 2) Whether this difference is due to more positivity towards the pre-pandemic or more negativity towards the pandemic can be determined using the two-sample difference-ofproportions t-tests. (Table 2). The empirical results of the t-tests for both the differences in positivity and in negativity revealed that statistically significant differences can be observed for both the positivity and the negativity degree, the probabilities (p-values) being smaller than a 1% significant level. Additionally, the difference in the ratios is for positivity 0.157, meaning that the prepandemic period has a 0.157 higher ratio of positive sentiments compared to the pandemic period. For the negativity degree, the pre-pandemic negative ratio is 0.087 higher than for the pandemic; this difference is also statistically highly significant. Therefore, we can conclude that the level of positivity slightly decreased during the pandemic, and so did the level of negativity. A potential explanation for this finding can rely on the fact that positive and negative emotions occur concurrently in a consumption experience [55] as the occurrence of blended emotional experiences has been demonstrated in the consuming of food [56]. Cacioppo et al. [57], Penz and Hogg [58], and Pang et al. [59] have recently proposed that humans can experience various emotions at the same time but of opposing valence. Customers react to extravagant consumption with a combination of emotions, both good and negative, according to Ramanatham and Williams [60]. Manthiou, Hickman, and Klaus [55] (p. 102218) explained very well the co-occurrence of positive and negative emotions, stating that "a couple has dinner at a fine-dining restaurant; although the atmosphere and decoration are splendid, they have to wait long for their main course. The wine is excellent, but the meat is overdone. The salad ingredients are fresh, but the salad dressing is inadequate. The dessert is delicious and delivered on time, but the two servers are not equally reliable and helpful. Will these customers depart feeling satisfied, dissatisfied, or both"? The ambiance was the attribute with the largest improvement in guest sentiment, in conjunction with the change to the growth of off-premises sales as dine-in activity fell alongside the increase in COVID-19 cases. Traditionally, off-premises food sentiment has always been lower than dine-in. All these could be reasons for the decrease in the positivity between both periods. During the pandemic, safety remains the customers' primary concern and meeting or exceeding expectations for safety can contribute to positive feedback online. --- Conclusions and Implications COVID-19 has been the restaurant industry's greatest challenge to date, as well as a severe public-health issue. Never before have such a large number of restaurants been forced to close, some of which will never reopen. Consumer demand will most certainly not grow instantly when restrictions are eased, according to early signs from China and other nations where the epidemic appears to be under control. Restaurants that prepare ahead and are ready to adapt and develop their business model in accordance with the "new normal" will be in a better position to restore pre-crisis sales levels. The study examined online reviews on Romanian fine-dining restaurants, discovering the underlying aspects related to the consumer experiences in these restaurants through content analysis and examining how the customer sentiment evolved over time, based on the results of sentiment analysis. The crisis caused by the COVID-19 outbreak is still an ongoing issue and the foreseeable future is uncertain. Whilst the data clearly indicate that the global economy is entering a recovery stage, scholars and industry experts claim that at the moment the "global trends" and "consumer trends" are nothing but predictions as no one can know for sure how industries, as well as consumers, will re-adapt to "normality" after witnessing the huge pandemic shock. As expected, during the pandemic there has been a sharp decline in client reviews, as a result of the strict measures imposed by the pandemic-measures that also included closing down restaurants. However, Casa di David has been the most constant in receiving reviews, while The Artist has been the restaurant with the highest number of reviews. In describing the customers' fine-dining restaurant experience, it can be mentioned that this experience is mostly related to words such as "food", "restaurant", "service", "Bucharest", "experience", "menu", "wine", and "excellent". If we explore this experience in a comparative way, before and during the pandemic, it can be highlighted that the fine-dining experience before the pandemic is characterised by "food", "service", "restaurant", "Bucharest", "experience", "menu", and "wine", while in the pandemic the words characterizing the fine-dining restaurants remain almost the same, namely "food", "restaurant", "service", "menu", "dishes", "experience", "Bucharest", "tasting", "staff", or "chef". Therefore, the fine-dining experience in a pandemic is more likely to be associated with the quality of the dishes as well as with the quality of service. In terms of negative sentiments, the fine-dining experience could be characterised before the pandemic by "expensive", "disappointed", "dessert", "bad", while during the pandemic these have been replaced by "bad", accompanied by "dessert", "rude", and "steep". In terms of positivity, the most common positive words in the pre-pandemic were "excellent", "nice", and "amazing", and they remained almost the same during the pandemic ("nice", "amazing", "wonderful", and "excellent"). The overall consumer sentiment in the direction of the restaurants analyzed is positive. The COVID-19 pandemic severely affected the Romanian restaurant business, as shown by the radical decrease in the number of reviews. Even while the restaurants continued to operate through delivery systems, it appears that this was insufficient to maintain their customers. The sentiment research found that throughout the epidemic the consumers' attitudes about restaurants deteriorated. In this sense, the consumers seem to be less satisfied with the restaurant's services than before the pandemic. This is another thing that the restaurants had difficulties in when adapting their operations for the pandemic (Tardin [35]). Managers in the food service business will benefit from the findings of this study. The results of the content and sentiment analysis clearly highlighted the most relevant aspects that consumers express interest in with regard to restaurants, showing paths for managers to facilitate and improve their restaurant's operations. The most common element mentioned by the customers is related to the price, which is associated with the lowest associated customer sentiment. Nonetheless, the COVID-19 context changed the socioeconomic environment in which restaurants operate. Consumers are evaluating the delivery aspect, and managers should keep up with this new demand. This research is one of the few types of research utilizing text mining together with sentiment analysis to examine consumer sentiments about the Romanian fine-dining industry, especially with regard to understanding the impacts of the COVID-19 pandemic on this sector. Despite this paper's contributions, one key question remains open: is there going to be a fundamental change in customer behavior towards the food service business after the epidemic ends and everything returns to 'normal'? --- Limitations and Future Directions of Research A first limitation of this research is the small number of reviews of the pandemic period. Collecting more data from this period can significantly change the results. The review website selection is also a limitation of this paper. The selection of only TripAdvisor could induce a platform bias. Therefore, future research can investigate the impact of COVID-19 on other platforms as well. Another limitation was the number of restaurants chosen. Last, but not least, the present article focused on discussing consumer sentiment changes during the pandemic (2020-present), in comparison to the pre-pandemic period (2010-2019). However, with the world economy now entering a recovery stage, consumer behaviour will be subject to periodic change, depending on the progress of the pandemic as well as the ability of individuals to adapt to the ever-changing "new normality". As a result, year-by-year analysis is recommended for the next five years in order to gain a deeper understanding of what the post-pandemic consumer looks like. Future directions of research include developing the analysis further to include restaurants of different price points, located in different cities in Romania, in order to gain a deeper contextual understanding of the current consumer sentiment in relation to the restaurant industry at a national level. --- Data Availability Statement: The main source for the data supporting the reported results can be found on the TripAdvisor website for each restaurant considered within the analysis. --- Funding: This research received no external funding. Institutional Review Board Statement: Ethical review and approval were waived for this study, due to REASON of using online reviews (secondary data). Informed Consent Statement: Individuals' consent was waived due to REASON of using online reviews (secondary data). --- Conflicts of Interest: The authors declare no conflict of interest.

c4d94815750c1f43f80fd259e4e49e8a86276da7

How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia?

Purpose Identify aspects of quality of life (QoL) important to Australian informal carers and explore how well the Adult Social Care Outcomes Toolkit for Carers, Care-related Quality of Life instrument and Carer Experience Scale capture these aspects in the Australian context. Methods Online questionnaires were completed by Australian informal carers. Socio-demographics, open-ended questions: positive/negative aspects of caring and QoL aspects missing from the instruments, and ranking of the instrument domains was used to explore the content of the instruments. Instruments were scored using preference-weighted value sets (reported in another paper). Content analysis was used to analyse the open-ended responses. Chi-squared test looked at differences in domain importance. Descriptive analyses summarised all other information. Results Eight themes were identified: Behaviour-mood of the care recipient, Caring responsibilities, Finances, Health, Own life, Perception of carers, Relationship with care recipient and Support. Many aspects of carer QoL mentioned as missing in the instruments appeared covered by the domains, of which all were reported as important. The highest ranked domain was relationship with the care recipient. The influence of the care recipient specific support, behaviour/mood and health on carer QoL appear absent in all instruments. Conclusion The content of the three instruments appears relevant in an Australian setting. The influence of care recipient's health and well-being on carer QoL should be considered, along with spillover effects. A content and/or face validity analysis is required to confirm differences in item interpretation in Australian informal carers.Informal care • Outcome measurement • Carer-related quality of life • Preference-based measures * Jessica Bucholc

Background Internationally, there is a growing call to include informal carer costs and benefits in economic evaluations to evaluate the broader impacts of health and social care services [1,2]. In this context, informal carers provide care beyond normal expectations within a pre-existing relationship (family member, relation, friend, neighbour) such as assistance with personal care, household activities or practical support, and generally do not receive payment for the care they provide [3,4]. Over the last 15 years, three carer-specific preferencebased instruments have been developed to measure outcomes for economic evaluations, the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) [5], Care-related Quality of Life instrument (CarerQol) [6] and Carer Experience Scale (CES) [7]. Whilst the number of economic evaluations including carer effects has grown in recent years, few have been conducted in the Australian setting [2,[8][9][10]. In Australia, there are about 2.8 million informal carers with over a third acting as the primary carer, i.e. the person who provides the majority of care [11]. In 2020, informal carers provided an estimated 2.2 billion hours of care, on average 786 h per year or 15 h per week (35.2 h for primary carers) [11,12]. If services were purchased from formal care providers, the replacement costs would be $77.9 billion, almost 40% of the total spending on health in Australia in the same year [11,13]. Given societies implicit reliance on carers' willingness to fulfil this role and the economic consequences if this situation should adversely change, it is crucial that carer costs and effects are considered in economic evaluations [11]. In turn, this would also better inform healthcare decision-makers on actual societal costs, increasing the chance that welfare optimising decisions are made. Two recent studies have investigated the relative construct and discriminative validity, test-retest reliability and responsiveness of the European-developed ASCOT-Carer, CarerQol and CES in a survey of Australian carers [14,15]. Studies in England have also compared ASCOT-Carer, CES, CarerQol and EuroQol-5 Dimension-5 level (EQ5D-5L) [14,16]. These studies indicate that the instruments tap into different constructs of carer-related QoL and caring experiences, reflecting the original purpose of the instruments and suggests the ASCOT-Carer, CES and CarerQol cannot be used interchangeably [16,17]. The ASCOT-Carer was developed to measure social care-related QoL and support of carers in the setting of policy and formal support interventions [5,18]. Whereas the CarerQol measures the impact of informal care on carers' QoL, combining the burden of caring and valuation of their well-being (happiness) in the context of an evaluation in health care [6]. The CES captures the caring experience rather than carer's QoL per se [19]. Validation has been investigated for the constructs in each of the instruments: the ASCOT-Carer with carers in England [5]; the CES with carers of older people in England [19] and the CarerQol with carers in eight European countries [6] [20]. Each of the instruments has preference weights, allowing the calculation of a summary score which reflects carers' preferences for difference aspects of carer-related QoL [7,[21][22][23]. An Australian population was only included in one of the CarerQoL validation studies [22], with the general adult population using hypothetical carer scenarios. Content validation of instruments assesses relevance, comprehensiveness, and comprehensibility of the questions and the overall instrument; ensuring interpretation is as intended, all aspects important to the specific population are included and that the instrument's constructs/domains measured as proposed [24]. Cross-cultural adaptations of instruments are important to capture differences in linguistics, colloquialisms, context and culture, even if translation is not required [25]. Qualitative research is ideally placed to validate the face value and content of instruments by exploring these social and cultural variables that may differ between informal carers in different countries [26]. Given the differences in health and social care support between countries [27][28][29], it is important to evaluate the applicability of these instruments in an Australian setting [25]. Consequently, the aims of this analysis were to identify aspects of carer QoL important to Australian informal carers and explore how well the ASCOT-Carer, CarerQol and CES constructs capture these aspects in the Australian context. --- Methods --- Study design An online questionnaire was administered to a sample of informal carers in Australia between June and September 2018. Participants were recruited through Carers Victoria, a state-wide not-for-profit organisation supporting carers to improve their wellbeing, health, resilience and capacity [30]. This analysis was part of a larger study that investigated the psychometric properties of the carer-related preferencebased instruments [15] and exploratory factor analysis [17]. --- Setting and participants Adults (≥ 18 years), Australian residents who self-identified as primary, informal carers and able to read the English written study questionnaire were invited to complete a web-based questionnaire. An email invitation was sent to all Carers Victoria registered informal carers who had previously consented to contact for research purposes. The online questionnaire link was also advertised in the Voice: Carers Victoria ebulletin which is distributed to all informal carers registered with the organisation and in researcher's social media posts. Informed consent was collected before starting the questionnaire and a $10 gift voucher was offered to all participants as an acknowledgement of their contributions. --- Instruments --- Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) There are seven domains in the ASCOT-Carer, a preferencebased instrument of carers' social care-related quality of life including; control over daily life, occupation (doing things you value and enjoy), social participation and involvement, personal safety, self-care, time and space to be yourself and feeling supported and encouraged [5,21]. The content of the ASCOT-Carer was developed from a literature review, focus groups and interviews with carers and care managers [31], and semi-structured interviews with carers [18,32]. --- Care-related Quality of Life (CarerQol) CarerQol contains two sections; the CarerQol-Visual Analogue Scale (VAS), which measures wellbeing and the CarerQol-7D which measures subjective burden [6,33]. There are seven dimensions in the latter; fulfilment, support, relational problems, mental health problems, problems combining daily activities with care, financial problems and physical health problems. The content of the CarerQol was developed from a survey of carers in the Netherlands and a review of eight popular burden measures [6,23]. --- Carer Experience Scale (CES) There are six dimensions in the CES, a preference-based instrument of caring experiences; activities outside caring, support from family and friends (social support), assistance from organizations and the government (institutional support), fulfilment from caring, control over the caring and getting on with the care recipient [7]. The content of the CES was developed from semi-structured interviews with carers in the UK and a meta-ethnography of qualitative studies on caring. --- Questionnaire The questionnaire was developed online using Qualtrics®. It was piloted to refine wording and comprehension of the activities with a convenience sample of Deakin University Health Economics and Faculty of Health staff members and informal carers (n = 21). Study participants had the option to complete the questionnaire over multiple sessions and all questions were voluntary. Figure 1 shows the sequence of instruments, randomisations and the question wording. Firstly, contextual questions about personal characteristics, caring situation and characteristics of the care recipient were asked. Followed by the randomised ASCOT-Carer, CarerQol and CES instruments to minimize potential ordering effects [15]. To achieve the aims of this paper, the first thirty participants were asked two separate free text questions about the greatest positive and greatest negative effect on their quality of life as a carer in the past week. To minimise survey burden, all participants were randomised to one additional activity: (i) instrument plus free Fig. 1 Questionnaire Flow. *Positive/Negative questions: Please describe the things that have had the greatest positive effect on your quality of life as a carer in the past week?; Please describe the things that have had the greatest negative effect on your quality of life as a carer in the past week? (Response free text). ** [Instrument] followed by question: Thinking about the statements included in this completed questionnaire, please describe any other things that affect your quality of life as a carer that were NOT mentioned. (response free text). *** [Instrument] and following each question: How important is this to your quality of life as a carer? (Response 5-point Likert scale, Very Important to Not Important at all). ˆCRA = Caregiver Reaction Assessment; Social Isolation = Three item UCLA Loneliness Scale; AQoL-8D = Assessment of Quality of Life-8 Dimensions text question on whether any aspects of carer QoL were not mentioned in the instrument (referred to in this paper as '[Instrument] missing domains'); (ii) instrument plus a 5-point Likert scale of the importance of each domain within the instrument s (referred to in this paper as '[Instrument] domain importance'); or (iii) complete the instrument only. Finally, all respondents were invited to rank the top five (out of the 14 total domains across the three instruments) most important aspects of caring from most to least relevant (referred to in this paper as 'ranking activity'). Other instruments were also completed by all participants in the final part of the questionnaire (Fig. 1, last column), for use in the broader project [15,17]. --- Data analysis Analyses were conducted in STATA Statistical Software: Release 17 [34], QSR NVivo software© (version 11) [35] and Microsoft Excel [36]. Instruments were scored using preference-based weighting of the respective instruments. To ensure consistency, the UK value sets were used for all three instruments. Results were reported in a previous paper [15]. --- Population Descriptive statistics were generated for the demographics, caring situation and care recipient characteristics. --- Relevance and comprehensiveness --- Relevance Responses to the Positive/Negative questions and [Instrument] missing domains questions, were imported into QSR NVivo software version 11 [35] for analysis to identify specific factors influencing respondents' care-related QoL. A four-stage content analysis procedure guided the coding of the open-ended responses: decontextualization, recontextualization, categorisation, and compilation [37]. Conventional content analysis was used in the development of the coding framework and themes were inductive, data driven, and with researchers avoiding using preconceived categories [37,38]. Responses for each instrument and question were coded separately. Coder one (JB) spent time noting any preliminary ideas, codes and themes before building categories and with these, a coding structure. Where responses contained more than one theme/sub-theme they were coded into each. Coder two (AU) reviewed the coding structure and relevant-free text responses. The two coders discussed differing views on codes and discrepancies were settled by authors LE and NM before finalising the coding structure. Proportions of the [Instrument] domain importance question rated as unimportant, neutral or important to respondents' CrQoL were calculated and compared with the Chi-Square test. In addition, for the ranking activity, descriptive analyses were used to determine number of times domains were ranked number one and also the number of times chosen in the top five ranks. --- Comprehensiveness The coding structure of the analysis for questions [Instrument] missing domains was reviewed by authors JB & LE to identify any key aspects of carer QoL that participants identified as missing from the instruments. --- Results --- Population Online Appendix 1 shows the sociodemographic characteristics and caring situation of the informal carers and care recipient characteristics of the total questionnaire sample and for each of the subgroups that received and completed the additional questions that contributed to this analysis. The total sample size was 500 participants with a mean age of 52 and the mean age of the care recipient was 45. Majority were female (79%) and had completed undergraduate and postgraduate education (46%). Just over half of the participants were employed (51%), while the other half were retired or engaging in housework duties including caring (46%). Just over half of participants were sole carers and a quarter providing care to multiple recipients. Most participants shared a household with the care recipient (81%) and had been caring for > 24 months (74%). Relationships with care recipients included children (32%), parents (32%), partners (25%) and other family members or friends (10%) with their most common medical condition being chronic diseases or disabilities (44%) followed by mental health problems (33%). --- Relevance The open-ended responses (N = 115) resulted in 244 units of data and identified eight themes: Behaviour-Mood of care recipient; Caring Responsibilities; Finances; Health; Own Life; Perceptions of carers; Relationship with care recipient; and Support. Although the qualitative positive/negative and Instrument [missing domain] question responses were coded separately, strong similarities between the coding frameworks were very apparent with the same themes present for each question, differences only in sub-themes. Each question appeared to elicit responses that indicated what matters to carers, so the results have been presented together in Table 1 which summarises the themes and sub-themes presented in Online Appendix 2. There was a wide diversity in the openended responses. The number of responses ranged N = 24-33 for each open-ended question (the two Positive/Negative questions and three [Instrument] missing domain questions). Likert responses to the importance of each domain were categorised into: Not Important (Not Important; Slightly Important), Neutral and Important (Important; Very Important) and aggregated within each instrument. The total instrument importance (Table 2) shows that carers in our sample judged all three instruments as important (≥ 80%) and ≤ 7% not important. There was no statistically significant difference between the ratings across the three instruments (Chi-squared 3.489, degrees of freedom 4, p = 0.479). Similarly, the importance of individual domains within each instrument indicated that all the domains for each instrument were important aspects of CrQoL (Fig. 2). Domains most frequently considered important were the CES domain of getting on with the care recipient (n = 54, 93%) and activities outside of caring (n = 50, 86%) and CarerQol's Mental Health Problems (n = 62, 89%). Domains deemed least important were for ASCOT Carer's personal safety (n = 11, 11%), and control over daily life (n = 9, 9%) and CarerQol's financial problems (n = 7, 10%). Table 3 summarises the instrument domain ranking activity. The top five ranked domains were the same using either analysis method (number of times ranked as position one or number of times ranked in the top 5), only the third and fourth positions (mental health and self-care) were reversed. --- Comprehensiveness After completing the instrument, very few participants reported that the carer-related instruments covered all aspects affecting care-related QoL (ASCOT-Carer (n = 2), CarerQol (n = 3) and CES (n = 2). Content analysis of this question for each instrument (Online Appendix 2) shows that all themes in the coding framework were identified as missing by our sample of carers. This is a particularly interesting result, as many of the themes are constructs measured by the instruments. --- Discussion This analysis identified aspects of carer QoL important to Australian informal carers and explored how applicable the constructs of ASCOT-Carer, CarerQol and CES were to this population. Behaviour-mood of care recipient, Caring Responsibilities, Finances, Health, Own Life, Perceptions of carers, Relationship with care recipient and Support were identified as aspects of caring that affect carer QoL in Australian. Comparing domains most importance in our sample with previous studies that developed preference weights and tariffs for the instruments showed mixed results. Occupation and control over daily life for the ASCOT-Carer where the most preferred among English carers [21], whereas our Australian sample found self-care and time and space to be yourself to be the most important. Suggesting that, with further investigation, Australian preference weights for the ASCOT-Carer may be in need of development. In our sample the importance of domains in the CarerQol (most important, mental health; least important, combining care and other activities) and CES (most important, getting on with care recipient and activities outside of caring; least important, control over caring) were in line with instrument tariffs [7]. CarerQol tariffs, developed for Australia, indicated mental health and combining caregiving with other activities as the most and least preferred [22,23]. Whilst in a sample from United Kingdom, the CES found activities outside of caring and getting on with the care recipient as most preferred and control over caring the least [7]. Almost all participants reported aspects of carer QoL not captured by the carer-related instruments. Many of these aspects that were perceived as not covered by the instruments, could have been included in the domains. This was also the case in a study looking at patient, self-reported, QoL aspects not captured by EQ-5D-5L [39]. As caring experiences are subjective and responsibilities and challenges vary greatly between carers, they may have felt the domain did not completely encompass their experience of carer QoL. This reflects how some aspects of QoL, which can be important to individuals, cannot necessarily be translated into a question for a QoL instrument. Particularly when required to be applicable to a broad range of carers (e.g. caring for partner, child, parent), align with the construct of the instrument, and also fit with other considerations (e.g., timeframe). Alternatively, respondents may have interpreted the questions differently or focused only on certain portions of the question (e.g. heading, examples or explanatory text). A content analysis of the end-of-life patientreported outcome measure showed that interpretation of questions is related to individual circumstances, where in financial matters varying themes of money, investments, funeral arrangements and wills emerged [40]. This could also explain why similar domains across instruments were treated differently. The domain of support is present in all three instruments, however, respondents reported different types of support were missing in each instrument (i.e. formal and informal support for the carer and/or care recipient). Comparable results were also found in more detailed studies of the exploratory factor analysis using this same dataset, where only a moderate correlation was for my son so that I can attend a meeting' (Carer_10) 'There is no support for carers that I know of. In the early days after my husband's stroke there was some support, but everything is capped at a certain amount of visits. And after that you don't meet the criteria anymore so you're on your own. I have not had a proper break from my caring duties for more than 2 years. I care for my husband 24/7. No one works those hours in paid employment. I love my husband and wouldn't have it any other way but to have support and know help is only a phone call away would be great.' (Carer_108, ASCOT-Carer) 'When we look like caregivers who look like they have all the bases covered, you receive less support' (Carer_778, CarerQol) 'this program has now been defunded so I won't have the opportunity to meet with the other carers monthly/bimonthly and the support worker has lost his job so I will no longer have him as a support/source of assistance with my caring responsibilities' (Carer_2) 'Frustration with Government Departments and Caring Organisations who because they are underfunded, over committed or don't/can't do their jobs effectively. I am constantly told they can or will help then simply do not carry out their promises and or don't follow up as promised' (Carer_179, CES) *Government financial assistance coded to 'Support' theme 1 3 found between CarerQol and CES support items and also for relational problems [17]. Content and/or face validation of the three instruments has not been performed with Australian carers, so detailed information of how each instrument's questions are interpreted and understood by this population is not known. The broader project performed a content comparison of the three instruments showing they each perform well in measuring their relevant domains with Australian carers [15,17]. However, the qualitative component of this study suggests that some differences in question interpretation may exist. The majority of sub-themes (over 50%) related specifically to the care recipient. However, only two domains include aspects of carer QoL that are influenced by the care recipient (CarerQol's relational problems and CES's getting on with the care recipient). Consideration was given to a similar domain in the development of the ASCOT-Carer, however, it was omitted because it did not fit with the construct of the instrument (social care-related QoL/impact of care services on carer QoL) [18]. This relationship between the care recipient and carer has previously been proposed as an advantage of the CES in capturing broader aspects of caring [7,15,16]. Given the possible interdependence of care recipient and carer QoL [41][42][43], instruments capturing both could be included in economic evaluations of carer and patient interventions to fully capture the effects of an intervention [44]. However, consideration also needs to be given to the type of evaluation being performed, the perspective taken and the possibility of double counting which could overestimate the benefits of an intervention [2,45]. Keeping these factors and participant burden in mind, an appropriate combination of instruments may be used in measuring carer QoL in studies focused on informal carers. Some of the missing aspects of carer QoL in the instruments, as reported by our sample, are intentionally not covered by the instruments as they each have been developed with different intentions and measure different constructs of CrQoL. The CarerQol was developed and intended to measure the impact/burden of caregiving on QoL and so, appropriately, does not include any themes specifically about the care recipient [6]. Similarly, the CES missing themes of finance and health are reasonably missing as the instrument's purpose is to measure the experience of caregiving. Health problems are not directly measured by CES, as qualitative research indicated that this was linked to other attributes included in the instrument [19]. And the ASCOT-Carer does not measure finance and health, as the instrument was developed as a measure of social care and support services on carer QoL. Financial hardship due to caring and health were considered in the early development of ASCOT-Carer [31], however, it was excluded as it was outside the scope of the instrument's purpose. Although health was not considered as a separate domain in the ASCOT-Carer it is captured by the lowest QoL (high-level needs) response option for each item and indicates that the carer has high-level needs that, if unmet over time, put the carer at risk of poor physical and/ or mental health. --- Strengths and limitations Content analyses have the potential to be influenced by researchers' experiences and preconceptions. Coding framework along with transcripts were reviewed by a second researcher independently and collaboratively discussed, reducing the impact of coder bias. Quotes and sub-themes were classified to themes based on consensus and the coding framework is presented to demonstrate how the data were categorised so that other researchers can consider how their interpretation aligns with the researchers' views. The recruitment of study participants and completion of the questionnaires occurred towards the end of the roll-out of a new government support system, National Disability Insurance Scheme (NDIS), which replaced the existing system of 1 3 disability support. The NDIS caused changes to administrative processes in receiving financial and formal support and may have been particularly front of mind for carers having to navigate this new system. Further, specific issues may have arisen directly due to changes in the systems. The cohort included a greater number of sole carers (55 vs 33%), a greater proportion of female carers (79% vs 57%) and a higher percentage of carers providing more than 30 h of care per week (55% vs 45%) compared to the Australian population of primary carers [11,12]. Income and employment, relationship to care recipients and sharing household with care recipient were similar to the Australian population of carers [12]. Uniquely, participants included carers of people with multiple health conditions. The study included informal carers in the Australian setting only and therefore results may have limited generalisability to other settings. Study participants were self-selected via newsletter advertising and, to reduce burden, randomly allocated to one additional activity described in this paper (excluding the ranking activity that was completed by all). This resulted in a different sub-group completing each (Positive/Negative question, the three [Instrument] missing domain questions, the three [Instrument] domain importance questions). Subgroup characteristic differences (Online Appendix 1) include the Positive/Negative question participants containing only females, being less employed, less likely to be married and more likely to have been caring for > 24 months and > 4 h of care per week and the CES missing domain participants being less educated and caring for more recipients with mental health problems. The open-ended components of this study were embedded in a larger quantitative study [15,17], so there was no opportunity to apply qualitative techniques such as faceto-face interviews or focus groups to explore responses in more depth, clarify the views' expressed or to measure comprehensibility of the instrument questions. Cognitive interviewing, in checking respondent's understanding, mentally processing and response to materials would help with understanding these differences. Cognitive interviewing evidence is present for the ASCOT-Carer in England [18,31,32] and during its translation into German [46,47], Japanese [48] and Finnish [49], as well as for the CES in England [19]. Australian evidence would provide a much greater understanding of the comprehensiveness and comprehensibility of the three instruments in this setting. As questionnaires were completed anonymously, researchers did not have an avenue to discuss findings with participants and receive feedback on the themes and analysis. Importance of domains in this study, were assessed by a sample of informal carers. Whereas carers also participated in the development of preference weights for the CES using a best-worse scale (BWS) valuation exercise [7], the ASCOT-Carer and CarerQol used the general population imagining a hypothetical state of being an informal carer using BWS exercise and a discrete choice experiment respectively [21,22]. The inconsistencies with our sample may be due to the differences in sample (i.e., carers or general population) and also between stated different methodology using preferences (hypothetical situation) or revealed preferences (actual or current situation) or due to different analyses. Three different approaches were used to investigate how well the instruments capture aspects of CrQoL important to Australian informal carers, strengthening conclusions concerning coverage. Some potential cultural/ethnic difference appear in the free text responses. However, with a very small number of participants born outside of Australia and/or speaking a language other than English (Online Appendix 1) these differences were not explored in this paper. A real opportunity exists for future research in this area of an Australian population. --- Conclusions Open-ended responses and quantitative data collected from a sample of Australian informal carers, suggest there are multiple aspects of caring that impact carer QoL. Consideration should be given to measurement of care recipient health and well-being and spillover effects affecting carer QoL, with thought to the risk of double counting. The ASCOT-Carer, CarerQol and CES appear to be relevant for an Australian informal carer population and include most of the aspects of quality of life important to them. The interpretation of questions may differ in Australian informal carers which requires confirmation with a content and/or face validity assessment. The findings support previous research that the selection of an instrument should take into account the aim, purpose and constructs of the instrument. --- Supplementary Information The online version contains supplementary material available at https:// doi. org/ 10. 1007/ s11136-023-03459-1. Author contributions All authors except JB contributed to the study conception and design. Material preparation, data collection and analysis were performed by JB, LE and NM. Double coding was performed by AU. The first draft of the manuscript was written by JB with input from LE and NM. All authors commented on previous versions of the manuscript. All authors read and approved the final manuscript. --- Declarations Competing interests The authors have no relevant financial or nonfinancial interests to disclose. --- Ethical approval The questionnaire and methodology for this study was approved by the Deakin University Faculty of Health, Human Ethics Advisory Group, Burwood, Australia (reference number HEAG-H 91_2018) and through the Carers Victoria's Carer Participation in Research process. Consent to participate Informed consent was obtained from all participants before commencing the questionnaire. Consent to publish Patients read and accepted, informed consent regarding reporting of research findings in a de-identified format. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http:// creat iveco mmons. org/ licen ses/ by/4. 0/. Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Evolution of the Digital Economy and Society Index in the European Union: Α Socioeconomic Perspective

The rapid development of information and communication technologies (ICT) in recent years has brought about signifi cant changes in many social sectors such as communication, economy, entertainment, and others. To defi ne the key role that ICT plays in its development course, the European Union (EU) has developed a composite indicator, the Digital Economy and Society Index (DESI), to assess the digital policy performance of its Member States. In the current work, an attempt is made to evaluate the performance of the EU countries on the digital economy and society with respect to implemented EU digital policies by studying the fi ve dimensions of the DESI for the years 2014-2019, using the corresponding DESI reports (DESI 2015 -DESI 2020). Moreover, the digital convergence among EU Member States, in terms of similarity of their performance in the fi ve dimensions of the DESI by grouping them according to the optimal number of clusters, is also examined. Since the optimal number of clusters is two, EU Member States are classifi ed in two groups, one of high and one of low performance in the fi ve dimensions of the DESI. The evolution of each member country and the possible transitions from one group to another during the years 2014-2019 is also a point of interest. The grouping of EU Member States into the two clusters showed that socioeconomic factors may aff ect the overall DESI. Linear mixed eff ect models confi rm the positive eff ect of Gross Domestic Product per capita, the public expenditure for education

Introduction In recent years, the development of technology and networks has been rapid, and this has a direct impact on the evolution of society. Increasing exposure to new digital technologies has brought about significant changes in many social sectors, and the concept of digitization lies at the heart of all (Castells, 2009). Digitization and development of information and communication technologies are restructuring various aspects of social life such as work, business administration, communication, entertainment, education, and the economy (Parviainen et al., 2022). Even in the field of education, a lot has changed, as learning can be provided without the physical presence of the teachers and/or students. The evolution of society through the development of new technologies and globalization processes is pushing the economy to undergo radical changes. The digital dimension of society and economy has been a huge advantage in COVID-19 lockdown, as without digital technologies, the economic hardships would have been even greater. The concept of digitization is dominating and, in combination with the development of ICTs, changing the way we work, communicate, entertain ourselves, and the way of life in general. In March 2010, the European Union (EU) set forth the Europe 2020 Strategy for Smart, Sustainable and Inclusive Growth in order to lift Europe out of the economic crisis and prepare its Member States' economies for the challenges of the next decade (Communication COM(2010) 2020; Bánhidi, Dobos & Nemeslaki, 2020). To achieve this, specific actions were proposed. One of them is the Digital Agenda for Europe (DAE), which aims to define the key role that ICT will play in Europe's development. The DAE aims to strengthen European economy by providing sustainable economic and social benefits from a digital single market (DSM) (Communication COM/2010/0245 final). To that end, a communication and a recommendation from the Commission were released in order to propose ways to update and improve the EU networks bringing the basic broadband to all Europeans by 2013 (Communication COM(2010) 472 final) and very fast internet by 2020 (Recommendation 2010/572/EU). Part of the DAE's targets were e-government and the re-use of public sector information, which are addressed in an action plan. It was set to exploit the ICTs to support the transition to a new generation of open, flexible, and collaborative e-government services and re-use of public data at local, regional, national, and European levels (Communication COM (2010) 743 final; Directive 2013/37/EU). The DSM is a prerequisite for EU's transformation towards the digital revolution of the 21st century (Troitiño, 2022). It is one of the EU policy priorities and provides businesses, particularly entrepreneurs, with new opportunities to scale up across Europe. It can expand markets and create opportunities for new start-ups, fostering better services at better prices and creating new sources of employment where advanced digitally skilled employees will be valuable (Communication COM/2015/0192 final). To strengthen human capital, a Communication was released in 2016, focusing on improving the quality and relevant skills formation by enhancing both basic and higher, more complex digital skills of citizens. More opportunities will be available when everyone is equipped with a broad range of skills (Communication COM/2016/0381 final). As digital competence has become key for citizens to participate in today's social, economic and civic life, the Digital Education Action Plan, adopted in 2020, will reset education and training for the digital age (Communication COM/2020/624 final). In 2021, the EU presented its vision for a successful digital transformation of Europe by 2030, putting forward four cardinal points: digitally skilled citizens and highly skilled digital professionals, secure, performant and sustainable digital infrastructures, digital transformation of businesses and digitalization of public services (Communication COM/2021/118 final). Digital competitiveness in our new digital era is challenging and each EU member is required to invest in digital economy and society. The European Commission has gradually developed several indicators to assess the digital performance of its Member States. One of the most popular indices is the Digital Economy and Society Index (DESI). The significant innovation of the DESI is that it represents an overall index that tracks the evolution of EU Member States' (Giannone & Santaniello, 2019). The DESI is a composite index consisting of five dimensions corresponding to five EU principal policy areas: Connectivity, Human Capital, Use of Internet (European Commission, 2020a). It summarizes relevant indicators related to the EU digital performance and monitors the development of its Member States in the field of digital competitiveness. Since 2014, the DESI has been a key analytical tool for the annual measurement of EU countries' progress towards the digital economy and society (OECD, 2018). As the DESI is the indicator that the EU uses to monitor the digital progress of its EU Member States in five dimensions, it undoubtedly plays a significant role in the decision-making process regarding the digital transformation of the EU. Many researchers used the DESI to study the digital progress of an individual country compared with the rest of EU members or with the average digital performance in the EU (Stoica & Bogoslov, 2017;Nagy, 2017;Moroz, 2017;Česnauskė, 2019;Russo, 2020), pointing out digital policies that should be formed to enhance the digital progress at the country level. Moreover, the DESI has been also studied at the EU level (Bogoslov & Stoica, 2019;Rakićević, Rakićević & Poledica, 2019;Bánhidi, Dobos & Nemeslaki, 2020;Borowiecki et al., 2021;Sevgi, 2021;Liu, 2022;Andrei et al., 2023) and the effect of several socio-economic factors on the DESI is also examined (Scupola, 2019;Stavytskyy, Kharlamova & Stoica, 2019;Marino & Pariso, 2021;Andrei et al., 2023). The current work extends the previous literature in the field by studying the evolution in time of each DESI dimension during the whole period of 2014-2019, using Repeated Measures ANOVA to highlight statistically significant inter-year differences on each dimension. To that end, the five dimensions of the DESI are studied over a six-year period (2014-2019), using the corresponding DESI reports (DESI 2015 -DESI 2020). In the current work, an attempt is made to evaluate the performance of the EU countries on the digital economy and society with respect to the implemented EU digital policies. Moreover, the digital convergence among EU Member States in terms of similarity of their performance in the five dimensions of the DESI, by grouping them according to their optimal number of clusters, is examined. Another novelty of our study is that the optimal number of clusters is determined on the basis οf 30 indicators (Charrad et al., 2014). In addition, the countries' interchanges are also a point of interest. Finally, the impact of some important socioeconomic factors on the DESI was also studied using linear mixed effect models, allowing the incorporation of fixed and random effects into the models since the existing literature is rather limited (Scupola, 2019;Stavytskyy, Kharlamova & Stoica, 2019;Marino & Pariso, 2021;Andrei et al., 2023). In the current study, more factors were in the European Union: Α Socioeconomic Perspective TalTech Journal of European Studies Tallinn University of Technology (ISSN 2674-4619), Vol. 13,No. 2 (38) selected to cover a wider area in the social and economic field, to represent the whole of society in a more comprehensive manner. More specifically, the effect of the Gross Domestic Product (GDP) per capita, the average number of weekly working hours, the unemployment rate, the consumption of renewable sources, the lack of corruption, the public expenditures on education and the percentage of gross domestic product spent on basic and applied research and experimental development on the overall DESI was studied. The results reveal the strengths and weaknesses in the countries' digital transformation that are of a great importance for policymakers at the national and European level to plan long-term policies. The rest of the paper is organized as follows. The relevant literature on the DESI and its structure are presented in Section 2 and Section 3, respectively. Methodology and methods are discussed in Section 4. The main results are presented in Section 5 and the discussion and implications are presented in Section 6. Recommendations are provided in Section 7 and some concluding remarks in Section 8. --- Literature review The DESI has gained a lot of research attention in recent years as a global index capable of evaluating states' digital performances related to society and economy, and it has caught the attention of policymakers. The rest of this section presents the most recent related literature. Bogoslov and Stoica (2019) studied the digital evolution of EU Member States during 2014-2019. They also examined the position of the EU at a global level, comparing the digital progress of the EU with non-EU countries. Rakićević et al. (2019) studied the overall index in the DESI 2018 report, using logical clustering to measure the proximity among countries forming five (5) groups. Their aim was to identify directions of digital policies to enhance each Member States' digital competitiveness, based on their proximity with the rest of the EU countries. Bánhidi et al. (2020) studied the correlations and partial correlations of the five dimensions in the DESI 2018 report. Moreover, they also grouped EU Member States in five (5) clusters, using hierarchical clustering. According to these results, adequate knowledge of the partial correlation between the dimensions of the DESI will help policymakers in decision-making process to improve competitiveness at local, regional, and European level. Sevgi (2021) used data from the DESI 2020 report and, by applying the k-means algorithm, grouped the EU Member States into four (4) groups, according to their performance in the five dimensions of the DESI. They also examined whether there were similarities between these groups and the classification of the welfare state regimes by Esping-Andersen (1990) in South Europe (Kammer, Niehues & Peichl, 2012), Central and Eastern Europe (Lauzadyte-Tutliene, Balezentis & Goculenko, 2018). According to the welfare of EU Member States, there are six types of welfare regimes: the Social Democratic, Conservative, Liberal, Southern, Central, and Eastern Europe. Each type of welfare state is characterized by the political situation (eligible government or not), social situation (labor market, gender differences in the labor market, demographic situation, population education, living conditions), and financial situation (real GDP) of a country, also government programs provided to citizens. According to their results, comparing the DESI clustering and the first welfare regime, countries applying the social democratic welfare regime (Finland, Sweden, Denmark, the Netherlands, and Norway) are better prepared for the digitization of the economy and future digital competition compared to other EU countries, as they have higher values in all dimensions of the DESI index. They are followed by the countries of liberal welfare regimes (United Kingdom and Ireland), with a small difference from the first category, and by the countries of conservative welfare regimes (Germany, Luxembourg, Belgium, Austria, and France). Finally, the rest of the countries (Italy, Spain, Greece, Portugal, Croatia, Poland, Slovakia, Slovenia, Bulgaria, Estonia, Latvia, Lithuania, and Romania) belong in the last three categories and have the lowest values in all dimensions of the DESI and are more likely to face problems in the future in terms of technological transformation and digital competition with other EU countries. Borowiecki et al. (2021) present the development of digital economy and society in the light of the digital convergence of EU markets using data from DESI 2015 and 2020 reports. They applied dynamic time series models to determine the dynamics of changes in DESI values and classified countries in terms of the similarity of DESI value, forming five clusters. Their results highlight the strengths as well as weaknesses in the Member States' digitization efforts to shape proper domestic governance and strengthen competitiveness in various areas of the economy. Liu (2022) intended to analyze the digital policy performance of EU countries based on the DESI and determined the similarities and differences between their digital performance using data from DESI 2017 report. A graphical analysis co-plot technique was used to categorize EU Member States based on the five DESI variables, creating four groups. Based on this classification, policymakers will design appropriate policies to boost digitization and economic development at national level. Scupola (2019) tried to investigate factors contributing to the digital transformation regarding digital public administration in Denmark. Using the longitudinal case study methodology, they concluded that low unemployment and well-educated population, revenues from exports and public administration which is supported by central government's policies, and political initiatives seem to be the key factors of success. Stavytskyy, Kharlamova and Stoica (2019) studied the effect of per capita expenditures based on purchasing power parity and unemployment on each DESI dimension. A panel regression model was constructed for 28 EU countries, using DESI reports from 2014-2018. Their analysis confirmed that a more prosperous society leads to more advanced digital services. They concluded that there is a certain positive effect of economic development and a negative effect of unemployment on all DESI dimensions apart from Integration of Digital Technology. Marino and Pariso (2021) studied the effect of four socio-economic factors on the DESI and on its dimensions in 2016-2018, performing a statistical regression analysis. They concluded that Social Progress, Corruption Perception, Global Innovation, and Doing Business indices positively affect DESI and most of its dimensions. Andrei et al. (2023) investigated the convergence of digitalization in the EU in terms of the DESI in each Member State during 2015-2020, taking into account indicators representing each country's economy. In their study, econometric models were used to estimate the σ and β convergence of the DESI. They also examined the effect of the gross value added and the education index during the convergence process. They concluded that, during the studied period, digital convergence was observed and that gross value added had a positive effect on the DESI, while education appeared not to be statistically significant. The adding value of the current paper is the study of the digital performance of European countries and the evolution of digital competitiveness over a six-year period, from 2014 to 2019, using Repeated Measures ANOVA to highlight statistically significant inter-year differences on them. Moreover, EU Member States are grouped into the optimal number of classes based on 30 indicators applying the k-means clustering method. The stability of the grouping per year is also studied. Finally, several factors, such as income, the average number of weekly working hours, unemployment rate, consumption of renewable sources, lack of corruption, public expenditures on education, and percentage of gross domestic product spent on basic and applied research and experimental development that may affect the DESI were studied. To that end, linear mixed effect models were utilized, which allow for fixed and random effects-an effective tool when there is dependence in the data. --- The structure of the DESI The DESI has a three-level structure, with five dimensions. Each dimension consists of subdimensions and these, in turn, of indicators. In total, the 5 dimensions consist of 12 sub-dimensions and these in total of 37 indicators. The Connectivity dimension examines both the demand and supply of fixed and mobile broadband. As to fixed broadband, it assesses the overall and ultrafast broadband (at least 100 Mbps), the availability of fast broadband access (next generation access (NGA), providing at least 30 Mbps), and the availability of very high-capacity fixed networks (VHCNs) while taking into account retail prices. Mobile broadband includes 4G coverage, mobile broadband adoption (3G and 4G) and 5G connectivity readiness indicator. Digital connectivity is considered a social right in the EU (European Commission, 2020b). The Human Capital concerns the digital skills of EU citizens, ranging from basic skills that enable people to participate in activities involving the use of digital devices and the internet consuming digital goods and services, to advanced skills such as those of ICT specialists (ICT service managers, professionals, and technicians) and ICT graduates that empower the workforce to develop new digital goods and services (European Commission, 2020d). The Use of Internet Services dimension measures the percentage of people who use internet services, and which of the available services they use. Activities include online content consumption (e.g., entertainment, such as music, movies, TV, or games, downloading multimedia-rich information, or engaging in online social interaction) using modern communication activities (e.g., participating in video calls) and activities transactions such as online shopping and banking (European Commission, 2020f). The Integration of Digital Technology dimension measures the digitization of businesses and e-commerce. Digital technologies allow businesses to be more competitive, improving their services and products and expanding their markets. To calculate the five dimensions of the DESI as well as the total DESI, the initial 37 indicators are standardized using the min-max method. The DESI is a weighted sum of the five aforementioned dimensions of the initial 37 indicators. Some dimensions and individual indicators are more important than others with respect to the priorities of EU digital policy and, therefore, have a greater effect on the calculation of the final DESI (European Commission, 2020a). The weights used in dimension level are Connectivity: 25%, Human Capital: 25%, Use of Internet Services: 15%, Integration of Digital Technology: 20%, and Digital Public Services: 15% (European Commission, 2020a). --- Methodology and methods The data used in the current study has been collected from the annual DESI 2015 -DESI 2020 EU reports. The annual DESI reports cover the period from 1 February of the previous year to 31 January of the following one. To determine the socioeconomic factors affecting the DESI for the period 2014-2019, data from both the European Statistical Office (Eurostat) and the World Open Data Bank (Word Data Bank) were used. Real Gross Domestic Product per capita (GDP) were retrieved from the World Open Data Bank and the consumption of renewable sources (RNRGconsumption), the lack of corruption (CORRlack), the percentage of GDP spent on basic and applied research and experimental development (GERD), the average weekly working hours (WORKINGhours), the percentage of GDP for preprimary to tertiary education (EDUexpend), and the unemployment rate (UNEMPLOYMENT) were retrieved from Eurostat. The data refer to 28 countries that belonged to the EU in 2019, observed over a period of six (6) years. The statistical analysis was conducted using R (version 4.2.0) and all the tests were implemented at 5% significance level. Initially, the main descriptive statistics of each of the five dimensions of the DESI are computed for the period 2014-2019. To study the evolution of the five dimensions of the DESI, first, the normality assumption of the data was tested by the Shapiro-Wilk normality test (Shapiro & Wilk, 1965). When the normality assumption was met, as in our case, the ANOVA test in a repeated measures design (Repeated Measures ANOVA) was utilized (Salkind, 2010). When the null hypothesis of Repeated Measures ANOVA was rejected, a post-hoc analysis was performed to explore differences between all possible group pairs using Tukey's test (Tukey, 1977). To group the EU Member States with respect to their performance in the five dimensions of the DESI, the k-means clustering method was implemented, as it is simple, fast, and efficient. Moreover, k-means leads to tighter clusters than the hierarchical clustering and it is easy to interpret the clustering results. As a measure of distance, the Euclidean distance was used. To determine the optimal number of clusters, NbClust package in R was used which "provides 30 indicators for determining the number of clusters and proposes to user the best clustering scheme from the different results obtained by varying all combinations of number of clusters, distance measures, and clustering methods" (Charrad et al., 2014). The performance in the five DESI dimensions was compared between the two groups. Finally, the effect of some main economic and social variables on the DESI was also examined. To that end, linear mixed effect models (LMM) were constructed, which are parametric linear models for repeated-measures data (West, Welch & Galecki, 2014). LMMs are an extension of simple linear models containing fixed and random effects in some analysis and are used when there is dependence in the data, such as repeated measurements on each subject over time, as in our case. The R's lme4 package (Bates et al., 2015) was used to construct an LMM with the DESI as a dependent variable and the aforementioned socioeconomic factors as fixed effects. A model with fixed effect of years and a randomized intercept per country was initially constructed. The fitted model would be expressed as where The two-dimensional fixed-effect vector β consists of the mean intercept, β 1 , and the common slope β 2 . The one-dimensional random-effects vectors, b i , i = 1 … ..28 describe a shift in the intercept for each country. Due to there being a common slope, these shifts are preserved for all values of year. A model with random effects for both the intercept and the slope was also constructed (Model 2). The above two models were compared using the function anova in R (Chambers & Hastie, 1992), and Model 2 was selected as optimal based on the Akaike criterion (Burnham & Anderson, 2004). In this model, independent variables were added (Model 3). The basic assumptions of the model, such as independence of data points, absence of measurement errors, independence of random effects from explanatory variables, linearity, and homoscedasticity of residuals (Fig. 1), are satisfied. The normality of the residuals and random effects has not been tested since it has been shown that mixed models are very resistant to the violation of the normality assumption of the residuals and the random effects (Schielzeth et al., 2020). The normality test of random effects is very difficult to implement as it requires additional assumptions for the model without which determining their distribution is impossible (Alonso, Litière & Laenen, 2010). --- Results --- Evolution of the DESI Τhe main descriptive statistics of each of the five dimensions of the DESI are presented in Table 1, where a steady upward trend through the dimensions of Connectivity, Use of Internet Services, Integration of Digital Technology, and Digital Public Services is observed over time. It is noticed that the median and average performance of the above dimensions are steadily increasing every year. Moreover, it is evident that the median of the Human Capital dimension remains stable in the first years and then an increase from 2018 is observed. Regarding the standard deviation, it remains stable in the Connectivity dimension, while decreasing steadily in the Digital Public Services dimension. For the rest of the dimensions, the standard deviation is stable at the beginning, whereas towards the end of the studied period, an increase is observed. Since the five dimensions of the DESI fulfil the normality assumption, Repeated Measures ANOVA was performed for each dimension and a statistically significant difference in the average performance is observed in all dimensions of the DESI during the studied period. The Tukey's test, which was implemented next, determined between which years these statistically significant differences were observed. As mentioned above, Connectivity evolves very quickly over time, which was also confirmed by the corresponding Tukey tests (Table 2), as in all DESI reports from 2015 to 2020, there is a statistically significant difference to the average performance of EU Member States in this dimension, from year to year. No statistically significant difference in the average performance of EU Member States was observed in the Human Capital dimension between the DESI 2015, 2016, and 2017 reports. A statistically significant difference appeared for the first time between the DESI 2017 -DESI 2018 reports, and between the DESI 2019 -DESI 2020. A delay in the appearance of a statistically significant difference between the average performance of the Use of Internet Services dimension in the EU Member States was also observed, as it appeared from the DESI 2018 report onwards. A statistically significant difference was observed in the average level of the Integration of Digital Technology dimension almost every second year. An exception is the year 2015, where there is a statistically significant difference from the very next year. A statistically significant difference was observed in the average performance of EU Member States in the Digital Public Services dimension in all DESI reports from 2017 to 2018, while it was first observed in the DESI reports from 2015 to 2016. --- Clustering The results of the NbClust package suggest that the optimal number of clusters is two (2) for each year. Figure 2 shows, by year, the map of Europe where the countries with high performance in the DESI are highlighted in darker grey (cluster1) and the countries with low performance in light grey (cluster2). Countries such as Belgium, Denmark, Estonia, Finland, Ireland, Bulgaria, Cyprus, Greece, Czechia, Croatia, Hungary, Italy, Luxemburg, Poland, Romania, Slovenia, and Slovakia remain consistently at a low level of performance. Countries such as Spain, Lithuania, Portugal, and Austria maintain high levels of performance for long periods of time, whereas in 2020, they transpire with a low performance level. Finally, there are countries such as France, Latvia, and Germany that do not maintain a steady course over the years and alternate between low-and high-performance group of the DESI. Additionally, a statistically significant difference is observed in the mean performance on four of the five dimensions of the DESI between the two groups each year. The boxplots of the course of the five DESI dimensions in the two groups are depicted in Figure 3. The Connectivity dimension in both clusters follows the same course with very small differences in the median values. The Human Capital seems to have no development in the countries of the second cluster during the studied period, contrary to the countries of the first cluster which show a significant development, especially in the last years. The Use of Internet Services seems to have a faster development in the countries of the first cluster which is also the case of the Integration of Digital Technology. However, the difference that exists between the two clusters regarding the evolution of these dimensions is clear. For the Digital Public Services dimension, the countries of the second cluster are quite behind compared to the countries of the first cluster. --- Impact of the socioeconomic factors on the DESI Using LMMs, two models were formed, one with fixed effect of years and a randomized intercept per country and the other with random effects for both the intercept and the slope. The two models were compared using AIC and Model 2 was selected as the optimal (Model 1: AIC 674.84, Model 2: AIC 669.12). In this model, independent variables were added (Model 3). In model 3, the variables, RNRGconsumption (p-value = 0.58), UNEMPLOYMENT (p-value = 0.76) and CORRlack (p-value = 0.7) are not statistically significant and were sequentially removed from the model that leads to the final one (Model 4). It is observed that all factors have a statistically significant impact on the DESI in Model 4 (Table 3). The average DESI increases by 1.72 per year for constant values of the variables GDP per capita, average working hours, education expenditure, and R&D expenditure, and by 1.99 for each unit of GDP per capita growth for constant values for the rest of parameters. It also increases by 0.81 for each unit of increase in the percentage of education expenditure and by 1.99 for each unit of increase in the percentage of R&D expenditure, while it decreases by 1.57 for each unit of increase of the average working hours provided that the values of the remaining explanatory variables of the model remain constant. --- Discussion and implications Considering the evolution in the five DESI dimensions for EU-28, the digital evolution of EU Member States is monitored under EU digital policies, established since 2010 by the DAE (Communication COM/2010/0245 final) and Europe Strategy 2020 (Communication COM(2010) 2020). Our findings show a clear increasing trend of the five dimensions of the DESI over time. However, some dimensions are evolving faster than others. The Connectivity dimension is the basis that will give the necessary space for the other dimensions to unfold, as it concerns the technological infrastructure but also the supply and demand of technological benefits. It evolves very quickly over time. EU digital policies seem to fulfil their goal in terms of infrastructure, bringing the basic broadband to all Europeans (Communication COM(2010) 472 final; Recommendation 2010/572/EU). Although the technological infrastructure appears to be present, the Human Capital and the Use of Internet Services dimensions, related to digital skills and using internet services, respectively, are delayed. It is likely that the population may need time to get acquainted with the new technology, to understand how they could use it and get familiar with internet services such as digital communications and transactions, this is also the case for Borowiecki et al. (2021) and Grigorescu et al. (2021). The Integration of Digital Technology dimension shows signs of improvement every second year. It is commonly recognized that a reasonable timeframe is required for the e-commerce and the digital transformation of businesses to take place. To formulate and implement a digital transformation strategy is a time-consuming task (Chanias, Myers & Hess, 2019). Finally, due to the priorities set by each country, whether it focuses on the modernization of its national portals or on an open data policy, the development trajectory of the Digital Public Services dimension is disrupted. The organizational and the technical support in e-government systems is rather challenging (Al-Sebie & Irani, 2005). Furthermore, the EU Member States were grouped in two clusters based on their performance in the five dimensions of the DESI, contrary to Rakićević, Rakićević and Poledica (2019), Bánhidi, Dobos and Nemeslaki (2020), Borowiecki et al. (2021) and Sevgi (2021) and Liu (2022), where they formed five and four clusters, respectively. A cluster consisting of countries with high performance (cluster1) and a cluster of countries with low performance (cluster 2) in all dimensions of the DESI were formed. Considering that the North-European countries are more digitally developed compared to the rest of the EU countries, these results are not surprising (Castells & Himanen, 2002;Sevgi, 2021;Andrei et al., 2023). Over the six-year period of our study, some countries alternate from one group to another. This is due to the different pace at which each country is evolving in relation to the rest. This is also confirmed by other researchers (Kyriakidou, Michalakelis & Sphicopoulos, 2011;Borowiecki et al., 2021). In addition, our results indicate that the grouping of EU-28 is not affected by the Connectivity dimension even though it evolves quickly and steadily over the studied period. It is revealed that the Connectivity dimension in both clusters follows the same trajectory. However, all the other dimensions are evolving faster in high performance countries than in low performance. Countries in cluster 1 have higher values in all dimensions of the DESI, as they are better prepared for the digitization of the economy and future digital competition compared to countries in cluster 2, as Sevgi (2021) has also indicated. Finally, it is observed that the division into two clusters also matches the economic profile of the countries. According to the proposed model, the DESI is indeed significantly positively affected by GDP, as Scupola (2019), Stavytskyy, Kharlamova andStoica (2019), andAndrei et al. (2023) have also concluded. The most economically developed countries seem to invest more in the digital transformation of both the economy and society (Castells & Himanen, 2002;Sevgi, 2021;Andrei et al., 2023). Moreover, the DESI is positively affected by educational expenditures, as Scupola (2019) also suggests in contrast to Marino and Pariso (2021). Countries which invest more in education from pre-primary to tertiary level seem to have better digital performance, which is also the case for countries which spend a greater percentage of GDP on basic and applied research and experimental development. A decrease in the DESI values is observed as the average number of usual weekly working hours in main job increase. While the working hours are on the rise, population have less time to get acquainted with the new technology either for training or to be involved in other leisure activities. Regarding the other studied factors-the unemployment rate, the consumption of renewable sources and the lack of corruption-it is found that they do not have a statistically significant impact on the DESI in the current study. --- Recommendations As the DESI is the core index, used by the EU to access the digital progress of its Member States, policymakers may rely on it to form appropriate digital policies at international, regional, and national level to strengthen the countries' digital transformation. As indicated, the Connectivity dimension evolves very rapidly over the sixyear period, while both Human Capital and Use of Internet Services keep following the evolution of the Connectivity dimension, even with a two-year delay. The Integration of Digital Technology and Digital Public Services dimensions do not show a rapid evolution. More effective strategies should be implemented to strengthen the more slowly evolving dimensions. Moreover, policymakers at global and domestic level should focus on the countries in cluster 2 to encourage their digital transformation. Long-term policies and supportive initiatives need to be implemented to foster digital transition, considering each country's characteristics. Our research has identified factors that affect the DESI. This knowledge is used by policymakers to develop appropriate policies to promote digital transformation. Policies towards the enhancement of citizens' basic and advanced digital skills need to be implemented to close the digital division across EU Member States (Janssen, Charalabidis & Zuiderwijk, 2012;Grigorescu et al., 2021). The related Communication released in 2016 does not seem to fulfil its target (Communication COM/2016/0381 final). Policymakers have to carefully design digitally based strategies in order to provide appropriately focused learning programs at basic and advanced digital skills. In addition to faceto-face education, distance education could be improved. Also, the gender and the age of citizens should be taken into account so that educational training will be inclusive and accessible to everyone. The Digital Education Action Plan was adopted in 2020 to enhance Human Capital and Use of Internet Services as these dimensions fell behind during the DESI evolution (Communication COM/2020/624 final). In the new digital era, acquiring the relevant knowledge will make citizens active participants, who are able to use internet services such as e-banking, video calling, online shopping, or social interaction. In addition, policies should be designed to foster business and public services digitalization. The digitization of business processes for products and services has helped companies to be more flexible in competitiveness. However, there is still a need to enhance the use of digital technologies such as digital platforms (Apple's iOS and Google's Android platform) and infrastructures (cloud computing, data analytics, online communities, social media, 3D printing, digital marketspaces) in business digital transformation (Nambisan, 2017). Digital Public Services is also a dimension left behind on the evolution path. Strategies for digital governance, such as transparency and openness of government processes to the public, should be developed. DSM also prompts the need for international cooperation with other governments to better serve citizens and businesses across borders (OECD, 2014). In addition, attention must be given to open data policies regarding reusable and available data in national data portals (Janssen, Charalabidis & Zuiderwijk, 2012). --- Conclusion The evolution of the society through the development of new technologies and globalization processes is pushing the economy into radical changes. Digital competitiveness in the new digital era is challenging and investing in the digital economy and society is required of every EU member. Since 2010, the EU has put in place strategies, action plans, communications, and recommendations related to digital advances, with the aim to support EU Member States on their path in digitalization and digital convergence. The EU introduced the DESI in 2014 as a key analytical tool for the annual measuring of EU countries' digital progress. The DESI is used to evaluate and shape Europe's digital policy towards the digital convergence of all EU countries, as it is presenting the digital performance of each Member State. In the current work, the evolution of the five dimensions of the DESI for the period 2014--2019, using the respective reports DESI 2015 to DESI 2020 was studied. Our study was conducted in the light of how policymakers at national or global level may be influenced by the DESI in their decisionmaking processes. The results revealed the current state of EU Member States' digital performance and highlighted the strengths and weaknesses in the digital progress. Also, the EU Member States were grouped based on their performance in the five dimensions of the DESI and factors that affect the overall DESI were examined. Two groups were created, one including countries with high and one with low performance on the DESI. Finally, socioeconomic factors such as GDP, EDUexpend, and GERD have a positive effect on the DESI, while the WORKINGhours have a negative effect. Our research may help policymakers worldwide to develop innovative strategies in facing digital economy challenges. For a more detailed study of the DESI, other socioeconomic factors could be incorporated in the proposed model and more complex models with interactions could be studied. As the digital economy is a global concern, a review of digital performance of the EU on a global level could be also studied. A study of the International Index of Digital Economy and Society (I-DESI) would help in that direction. Modern society and economy are changing as ICT has developed rapidly in recent years. When taking into consideration the new needs for work, leisure, communication, education, and online shopping, arising from the COVID-19 pandemic, it is commonly recognized how urgent it is for the EU to monitor, understand, and follow the digital evolution. --- Sonia Malefaki is an associate professor at the Department of Mechanical Engineering & Aeronautics of the University of Patras. Her research interests are mainly in computational statistics, simulation methods, Monte Carlo and Markov chain Monte Carlo methods. She also works on Bayesian statistics, Markov and semi-Markov processes, reliability, maintenance longitudinal data, and clustering techniques. She is the author of 37 papers in international journals and has edited volumes and more than 15 papers in international conference proceedings with referees.

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How Health Care Organizations Should Support Social Services.

In a recent JAMA Health Forum article, Glied and D'Aunno ask whether health sector investment in social services is "a bridge too far" and raise concerns about differing priorities, skills, finances, and functions of the 2 sectors that question whether this is a good match for collaboration. 1 As health care organizations ponder their role, if any, in supporting social services, there is growing evidence of health benefits from certain investments in social services (including housing and nutrition). But it is hard to make a traditional return-on-investment (ROI) case for many instances of health systems funding social service programs. For instance, to the extent that this "upstream" social funding helps improve household and community health, it means reduced revenues to hospitals and fee-for-service medical practices-so, not good for business. Managed care organizations do have a stronger business incentive to address their enrollees' healthinfluencing social conditions. Still, although there is evidence that certain investments in housing, nutrition, etc do yield health care savings, the direct ROI to the health sector is often questionable. 2

The ROI Conundrum This does not actually mean such investments have a poor return; it's just that the principal returns often do not accrue to the investor. Health organization investments typically have positive spillover effects in areas beyond immediate health savings, such as economic improvement, better school graduation rates, and better long-term community health. But this form of value-added is not captured as revenue or savings by the health sector investor-a classic "wrong pockets" problem. In the same way, improvements in housing conditions financed by a housing authority, or a reduction in violence-caused injuries from new policing programs, can generate large spillover health care savings, yet the financial value of those health benefits do not accrue to the budget bottom line of housing authorities or police departments. The result in each case is usually suboptimal levels of investment in the general well-being of a community. The key to achieving an optimal level of health system funding of social services, in which public funding is supplemented with health sector funding aimed at improving health, is to organize these investments through multisector partnerships in a community, with each partner strategically investing in community needs that generate spillover benefits to all partners. If designed and implemented well, this partnership approach encourages investments by all community partners to create a strong social return on investment (SROI), with benefits and savings shared by each partner as it advances its goal. Of course, reaching that result requires the investing partners to agree on their shares. That can easily lead to difficult negotiations and heightened distrust. Nichols and Taylor are among those testing procedures in communities to create a positive climate, in their case through an innovative bidding process run by a neutral broker and designed to align each partner's investment commitment with the benefits it will receive from joint action. --- Government Encouragement There are several ways to encourage appropriate health sector investments in social services. --- Taking a Back Seat in Partnerships Effective partnerships require trust, understanding, and the effective use of complementary skills. Indeed, a review of health-human services partnerships suggests that the quality of the relationship is key. This is not easy to achieve between health and social service organizations when communities often doubt the motives and commitment of large health institutions that, in turn, can be skeptical of the expertise of community organizations. Health systems need to adapt to this reality for their investments to be most beneficial. In 2017, Kaiser Permanente considered supporting a public health and economic development project in Baltimore, Maryland; however, the organization was not then well known in the mid-Atlantic area. So it first partnered with Bon Secours hospital, a very small but highly respected institution in the community; essentially, Bon Secours "credentialled" Kaiser within the community. CommonSpirit Health has been a pioneer in developing trusted partnerships with social service organizations in communities. CommonSpirit recognizes that there is a critically important difference between functioning as a catalyst for action and being in the driver's seat. It has partnered with the Pathways Community HUB Institute (PCHI) in 6 communities. In the PCHI model, a neutral hub operated by a local entity links a network of community organizations, health systems, and community health workers to help coordinate care and address health-related social needs. CommonSpirit, along with competing health systems in each area, funds a "community bank" that helps fund the hub's operating costs and covers otherwise nonreimbursable service costs. It is an intriguing example of how a community partnership can function and how competing health systems can collaborate in a "co-opetition" model for their common benefit. 3 We have come to appreciate that achieving healthier communities requires a larger focus on social factors contributing to ill health. For that to happen, we need to design better SROI techniques and ways in which community savings are distributed. Health systems need to deploy investment resources in ways that prevent illness as well as treat it. Their levels and type of investment should also reflect the broad economic value of prevention and better health. And they must appreciate the importance of sharing control of decision-making over the use of their own investments. That is not an easy equation to get right. But we have been making steady progress and should be encouraging health systems to explore more partnerships. --- JAMA Health --- ARTICLE INFORMATION

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Reservations to Participate in Biospecimen Research among Pacific Islanders.

Background and Significance: Despite high rates of chronic diseases like cancer, diabetes and cardiovascular disease, Pacific Islanders (PIs) are underrepresented in clinical and genetic studies designed to identify the physiological causes of poor health outcomes. There are limited genetic data and biospecimen samples from PIs under study. This paper described why PIs have reservations about donating their biospecimen samples for research. Methods: Data were drawn from a pilot study designed to assess the knowledge, attitudes and beliefs surrounding biospecimen research among PIs in southern California. Utilizing a community-based participatory research approach, community and academic partners collected quantitative and qualitative data from a total of 60 PI adults with a mean age of 61 years (SD 13 years). Results: "Fear", "God or Spirituality" and "Lack of Information or Knowledge" were the most cited reasons for not participating in biospecimen research. Respondents younger than age 65 years expressed more concerns about donating their biospecimen samples than those older than age 65 years (p<0.012). No significant gender differences were found (p=0.84). Conclusion: Our results emphasize the need to conduct relevant and appropriate biospecimen education among minority communities in order to address misconceptions and build support to increase PI and other minority participation in biospecimen-related studies.

Introduction Research over the past two decades have established the difficulties of recruiting ethnic minorities to medical and behavioral research studies (Hilton et al., 2010;Hoel et al., 2009;Hussain-Gambles, Atkin, & Leese, 2004;Shavers-Hornadaya, Lynch, LF, & Torner, 1997;Wang, Fridinger, Sheedy, & Khoury, 2001). Researchers are beginning to understand that such populations often have structural, cultural and language barriers that hinder their participation (Ford et al., 2008;Giuliano et al., 2000). Furthermore, reasons for non-participation are rooted in cultural and religious beliefs (Kwan et al., 2014). Participation rates for Pacific Islanders (PIs) (i.e. people of Polynesian, Melanesian and Micronesian descent) are much lower than their African American, Hispanic and Asian counterparts. Even as a combined group, Asian Americans and Pacific Islanders account for less than 10% of the respondents in most research studies (Chlebowski et al., 2005;Ford, et al., 2008;Giuliano, et al., 2000;Murthy, Krumholz, & Gross, 2004). This paper reports on pilot data regarding the reasons that deter PI participation in biospecimen-related research. Epidemiological data have shown that PIs suffer disproportionately high rates of health disparities compared with most other racial and ethnic groups (Dachs, Currie, & McKenzie, 2008;OMH, 2012). Cancer, heart disease, stroke and diabetes are among the major causes of morbidity and mortality among PIs. Despite these large disparities, research aimed at addressing the underlying causes of disease and illness have had limited success at recruiting and retaining participants. An extensive review examining the barriers to recruiting underrepresented populations to cancer clinical trials found that low participation rates for ethnic minorities are related to lack of awareness about the nature of the studies, lack of culturally relevant materials, and mistrust in researchers (Ford, et al., 2008). Some participants are reluctant to participate because of self-perceived harm of clinical trials and loss of control as it relates to treatment. One study cited found that lack of trust in researchers and the institutions involved were also major barriers for minorities, due to incidents of abuse and unethical conduct in the past (Santos, 2008). (Tanjasiri & Tran, 2008;Tanjasiri et al., 2007) explored the knowledge, attitudes and beliefs that PIs have towards biospecimenrelated research. The study collected both quantitative and qualitative data from adult PIs, 21 years of age or older, and asked what they thought about biospecimen (explained as urine, blood, hair, nail and skin samples) collection, research, and banking. Details about the specific conceptual model, methods, instruments and results have been reported in a previous paper that found general support for biospecimen research among PIs (Kwan et al., 2014). The majority of the PIs interviewed did support biospecimen research, and were willing to donate their biospecimen sample if asked. In order to better understand why such support has not translated into actual donations and inform future biospecimen collection-related studies, this paper reports on the findings that relate to PIs' reluctance to participate in studies that involve biospecimen samples. Based on previous efforts completed among minority populations and general discussions with community leaders, the authors believed that PIs are reluctant to participate in biospecimenrelated research because of a lack of awareness about the studies and its potential benefits to individuals and community (Fong, Braun & Chang, 2003;Ford, et al., 2008). It should be noted that the results presented in this paper pertain only to those respondents who responded with hesitation about donating biospecimens for research. --- Methods --- Study Design Utilizing a community-based participatory research (CBPR) approach, PI community leaders from five community-based agencies in Los Angeles, Orange and San Diego counties worked with the academic researchers to conduct this mixed methods study. The community-university team developed the conceptual model, screening and recruitment materials and qualitative and quantitative study instruments. --- Sample Eligible participants were those who selfidentified as being PI, over the age of 21 years and living in the southern California area. Participants were recruited through word-ofmouth, at PI festivals and events and through flyers posted and distributed in community partner organizations. Since this was a pilot study, the sample was a convenience sample of PIs who received services from the community organizations (i.e. health education classes, health insurance information, health screenings and referrals, etc.) or those who knew the health educators in various capacities. In addition, study team members actively recruited cancer survivors because of their unique experiences with biospecimen collection during their cancer diagnosis and/or treatment activities. --- Measures Approved by the Institutional Review Board at Claremont Graduate University, the study instruments consisted of a 46-item paper and pencil questionnaire and a semi-structured oneon-one interview. The paper and pencil questionnaire included demographic, acculturation, health status and cancer history items. Whenever applicable, standardized scales such as the health locus of control scale (Wallston, 1978) and the acculturation scale (AHIMSA) (Unger et al., 2002) were adapted and used in the questionnaire. The interview questions assessed respondents' satisfaction with providing biospecimen samples, willingness to donate, and perceived threats and risks of participating in biospecimen-related studies. For example, we asked "What would stop you, if anything, from personally volunteering to take part in tissue sample research?", "What might be some reasons why a person might not want to participate in genetic research?" and "In your opinion, how might tissue sample research harm your community?" --- Data Collection Data was collected by trained PI health educators at their offices, and all took place in one day. Health educators scheduled one-on-one meetings with each respondent after they were recruited to the study and agreed to participate. Each meeting ranged from approximately 1 to 1.5 hours (i.e. 20-30 minutes to complete the paper and pencil questionnaire which was followed immediately by a 40-60 minute oneon-one interview). Respondents were offered breaks in between the questionnaire and interview portions, although most did not need it. Due to the nature of the data collection method, respondents were not scheduled together and all data collection was done individually. --- Data Analysis Quantitative data analysis was conducted in STATA version 10.0. Basic univariate data analyses were conducted to find the mean age and gender, ethnic and educational level distributions. Frequencies are presented in Table 1. ATLAS.ti was used to code the transcripts into various themes such as reservations, satisfaction, willingness and trust. Each time a respondent provided an answer, it was coded under a particular theme and sub-theme, if appropriate (e.g. "reservation: fear" or "reservation: lack of knowledge"). It was not uncommon for a certain theme to be expressed by a respondent more than once and thus certain themes and subthemes appeared more frequently in an interview transcript than others (i.e. a respondent may have expressed that he/she had "reservations about providing samples because of fear" multiple times throughout the interview). The percentage of coded responses for a particular concern about biospecimen donation is defined as the number of responses coded for the reason divided by the total number of coded responses for the entire sample (i.e. 1601 coded responses). --- Results As shown in Table 1, a total of 60 PIs were interviewed for this study, half of whom were over the age of 65 years. Twenty-one out of the 60 respondents were male. The largest PI ethnic groups in the sample were Native Hawaiians, Samoans and Chamorros. A majority of the respondents had completed high school and post-high school education. Forty one (68.3%) respondents shared that they had some reservations or reluctance about providing their biospecimens for research. A total 53.3% of the respondents aged 65 years or older had reservations about donating biospecimen samples, compared to 83.3% of respondents younger than age 65 who expressed their reservation. A similar proportion of males and females expressed some form of reservation. A majority of the Chamorro and Tongan respondents reported having reservations about participating in biospecimen studies (83.3% and 77.8%, respectively). Education level was not related to whether or not a respondent had reservations. A majority of the female respondents expressed "fear" (76.5%) as their main reason for having reservations about donating their biospecimen sample followed by "lack of knowledge" (56.3%) and "God or spirituality" (72.7%). Male respondents shared similar reasons except that "fear" was cited less often than "lack of knowledge" among males (23.5% and 43.8%, respectively). When analyzed by age, respondents over the age of 65 years indicated that "fear" was their main reason for having reservations (35.3%) while those younger than 65 years cited "lack of knowledge" as their main reason (81.3%). "…a lot of our Polynesian society doesn't want to know. They actually feel that as long as they don't know, it is not happening. Cause there's a lot of people still living in the back, you know. You know, back in the olden days when you don't talk about it, you don't see it, then it is not happening. I think, they have to be educated. But educated in the basics, so they can understand what is being done and what is being said them." -Female, Native Hawaiian --- God, spirituality (11) "…the whole idea with genetic research is um, something that I need to think about more, cause I consider myself a spiritual person and I believe God is the only one that can, should create life and um, so it, it might bother me more than normal" -Female, Native Hawaiian "Yup, yup. And I understand they need to do some of these things better, but sometimes they get a little crazy and you know, to me, overstep the bounds between man versus God, our creator" -Female, Native Hawaiian "…I'd rather leave that up to God" -Female, Marshallese Cloning, scrutiny of genes (5) "Um, more Frankenstein kind of stuff. You know, what the heck are they going to do with me. Are they going to slice my genes and goat and see if we are more alike than not. Genetic research kinda scares me. Spiritually, I don't. I back away from it." -Male, Native Hawaiian "yeah I just don't want people using my genetics to make monkeys," -Female, Tongan --- Discussion To our knowledge, this pilot study is the first of its kind to report on the reservations that PIs living in the continental U.S. have towards biospecimen research. We found that PIs have authentic reservations that hinder their participation such as fear of pain and not wanting to find out about potential health problems. These findings are consistent with previous research studies conducted among African American and Hispanic communities (Corbie-Smith, Thomas, Williams, & Moody-Ayers, 1999;Giuliano, et al., 2000;Shavers-Hornadaya, et al., 1997). Through our interviews and informal discussions with PIs, we learned that some PIs would rather not know about their health problems. These individuals think that if they do not know about their health problems then the problems do not exist (i.e. it is better to not know). Some respondents expressed that even if they learned about their health problems, they would not change their views because of the belief that disease and death are beyond their control. As mentioned earlier, the major finding obtained from the overall pilot study was general support for biospecimen research (Kwan, et al., 2014). Many PIs indicated that they support research that will benefit others in their community and are willing to provide biospecimen samples for that specific purpose if asked to do so. However, a small but important proportion of respondents expressed reluctance to participate personally in research. "Reservations" as a combined theme made up less than 6% of the total coded responses. This means that among all the responses that were coded (i.e. 1,601 total coded responses), reservations only comprised 6% of those responses. It is imperative that researchers better understand respondents' fears and misgivings if we are to increase PI and other minority involvement in research in the future. --- Limitations Several limitations existed in this study that should be noted. First, because this was a pilot study the sample size was small (N=60), and thus respondent fears may not reflect the beliefs of the larger PI population. Further, we did not employ random sampling and thus our findings might not reflect the knowledge, attitudes and beliefs of PIs living in other parts of the U.S. or around the world. For instance, a majority of our respondents were U.S. born, and thus their relatively higher levels of western acculturation may be unique to PIs in the region covered by our study. Second, close to two-thirds of our sample was female and over half were cancer survivors. The experiences of cancer survivors are different from that of the general population because they have been more exposed to clinical practices like blood drawing and biopsies. Cancer survivors also have more exposure to health care providers and medical and research staff during their diagnosis and treatment. --- Implications Although drawn from a small sample of PIs in southern California, we hope the findings from this study provide researchers with valuable information that helps in the planning of and recruitment to research studies among PIs and other minorities. Since the participation of minorities in biospecimen research is essential to reductions in health disparities, it is important that all factors, whether they encourage or hinder participation, be reviewed, carefully considered and properly addressed. If we can address the fear and reluctance that potential respondents have about our studies -whether through improve recruitment methods, more outreach and education about our studies or through a more user-friendly informed consent form -participation, enrollment and retention of minorities may be improved.

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Socioeconomic Inequalities in COVID-19 Incidence During Different Epidemic Phases in South Korea

Objective: Area-level socioeconomic status (SES) is associated with coronavirus disease 2019 (COVID-19) incidence. However, the underlying mechanism of the association is context-specific, and the choice of measure is still important. We aimed to evaluate the socioeconomic gradient regarding COVID-19 incidence in Korea based on several area-level SES measures. Methods: COVID-19 incidence and area-level SES measures across 229 Korean municipalities were derived from various administrative regional data collected between 2015 and 2020. The Bayesian negative binomial model with a spatial autocorrelation term was used to estimate the incidence rate ratio (IRR) and relative index of inequality (RII) of each SES factor, with adjustment for covariates. The magnitude of association was compared between two epidemic phases: a low phase (<100 daily cases, from May 6 to August 14, 2020) and a rebound phase (>100 daily cases, from August 15 to December 31, 2020). Results: Area-level socioeconomic inequalities in COVID-19 incidence between the most disadvantaged region and the least disadvantaged region were observed for nonemployment rates [RII = 1.40, 95% credible interval (Crl) = 1.01-1.95] and basic livelihood security recipients (RII = 2.66, 95% Crl = 1.12-5.97), but were not observed for other measures in the low phase. However, the magnitude of the inequalities of these SES variables diminished in the rebound phase. A higher area-level mobility showed a higher risk of COVID-19 incidence in both the low (IRR = 1.67, 95% Crl = 1.26-2.17) and rebound phases (IRR = 1.28, 95% Crl = 1.14-1.44). When SES and mobility measures were simultaneously adjusted, the association of SES with COVID-19 incidence remained significant but only in the low phase, indicating they were mutually independent in the low phase.The level of basic livelihood benefit recipients and nonemployment rate showed social stratification of COVID-19 incidence in Korea. Explanation of area-level inequalities in COVID-19 incidence may not be derived only from mobility differences in Korea but, instead, from the country's own context.

INTRODUCTION Since the first case, reported in December 2019 in China, the severe acute respiratory syndrome coronavirus-2 (SARS-CoV2; COVID-19) pandemic has caused unprecedented global challenges due to rapid interpersonal transmission. This virus causes symptoms ranging from mild, such as sore throat and fever, to severe pneumonia resulting in death (1). Due to a higher transmission rate than other coronaviruses (reproduction ratio: 2.44-4.18) and a high proportion of asymptomatic infectious people (2), the global pandemic has grown significantly, causing nearly 271.4 million cases with 5.3 million deaths (as of 16th December 2021) according to the World Health Organization (3). In Korea, since the first case of COVID-19 in a person who visited China was identified on January 20, 2020, multiple clustered outbreaks associated with religious followings, call centers, and courier services led to a surge in the number of disease occurrences; this was followed by enhanced strict counteractive measures, including social distancing, that were enforced by health authorities, which reduced the weekly average number of cases to single digits (4). However, due to increased outdoor activities, large-scale gatherings during the holiday season and seasonality, the number of newly infected cases grew dramatically to more than 1,000 cases daily, mostly driven by a substantial increase in infections in the capital region, where 25.92 million people live within 11,851.26 km², one of the most densely populated areas in the world. Historically, disadvantaged people have been highly vulnerable to emerging infectious diseases, especially when they become a persistent epidemic (5). In recent studies on COVID-19, historic evidence showed that socioeconomically vulnerable individuals were more likely to have higher incidence and case-fatality rates of COVID-19 (6,7). This indicates that underlying socioeconomic gradients are strongly associated with the distribution of incidence and fatality rates of COVID-19, due to variations in personal hygiene, access to testing and treatment, compliance level with social distancing policy, and the ability to work remotely (8). In recent studies regarding COVID-19 in the United States, low-income individuals were less able to reduce their mobility or maintain social distancing, indicating that economic activity is highly associated with behavioral responses to social distancing policy (9,10). In addition to individual socioeconomic vulnerability, area-level socioeconomic disadvantages have consistently been associated with COVID-19 incidence. Area-level socioeconomic status (SES) tends to depend on territory-based communities that characterize human society because of a shared socioeconomic basis, commonality in available services, living culture, and lifestyle (11). Area-level socioeconomic measures have been identified in various ways and typically measured using an aggregate variable (e.g., median household income) or a composite measure (e.g., deprivation index). Each measure represents a unique contribution to the socioeconomic association. Specifically, associations with COVID-19 were consistently observed for median household income (12,13) and minor ethnicity (1,14,15) but findings for deprivation index (16,17) and unemployment rate (13,14) were inconsistent, indicating that area-level SES measures have different values across time and place and that how they are measured is important (18). Individuals from lower SES areas are more likely to be infected for various reasons; however, in most studies, the primary cause was the lack of mobility reduction resulting in the inability to maintain social distancing. However, the mediating role of mobility was advocated in other studies to explain area-level socioeconomic inequalities in COVID-19 infection based on the high correlation between area-level SES and mobility reduction (10,16,19,20). Despite wide acceptance of the explanation, studies in which the underlying relationship was investigated using both measures are scarce. Thus, firm empirical evidence is lacking on whether the effect of area-level SES on COVID-19 incidence depends on the level of mobility. This concept may be particularly relevant in countries like Korea, where socioeconomic inequalities in COVID-19 incidence may not be straightforward because affluent areas are also a central business place. As noted below, Korea had been undergone a relatively lower level of COVID-19 incidence compared to other countries (21). Nevertheless, a better understanding of regional disparity in COVID-19 incidence is a huge challenge because it is essential to monitor the pattern of spread into subsegment of the population, let alone the incidence from the entire population. Thus, we investigated the socioeconomic inequalities in COVID-19 incidence at the level of a primary administrative unit of local government in Korea, using a diverse range of socioeconomic indicators including a mobility measure. In this study, we investigated (1) whether area-level socioeconomic measures are associated with COVID-19 incidence at the municipality level; (2) whether the associations' differences in the association between socioeconomic inequalities and COVID-19 incidence in two different epidemic phases with disparate social distancing enforcement; and (4) whether socioeconomic inequalities in COVID-19 infection are mainly due to mobility differences. --- MATERIALS AND METHODS --- Study Base Overall, Korea experienced favorable outcomes of COVID-19 compared with other countries in terms of incidence and mortality through the pandemic and the study period (21,22). To evaluate the effects of socioeconomic inequalities on COVID-19 incidence at different epidemic levels, the epidemic period was divided into two phases based on the daily number of cases and the accompanying social distancing intensity level as shown in Figure 1: low phase (from May 6 to August 14, 2020) in which less than 100 mean daily cases were confirmed with the eased social distancing regulation (level 1) and rebound phase (from August 15 to December 31, 2020) in which more than 100 mean daily cases were reported with stricter distancing imposed (level 2). Because the early phase of the epidemic was induced by a specific religious congregation concentrated in very limited municipalities, the starting time point in this study was March 5, 2020, to ensure the validity of the results (23). The social distancing level enforced by the Korean government was classified into two levels during the study period through the guidelines underwent several changes afterward. For example, under level 2 social distancing, the use of face masks in public became mandatory, social gatherings with more than a certain number of individuals were prohibited and restaurants must be closed after a specific time point but without movement restriction. Lower social distancing regulation (i.e., level 1) began from May 6 to August 14, 2020, and stricter social distancing measure (i.e., level 2) was enacted from August 15, 2020. --- Socioeconomic Status Measures and Covariates The information on COVID-19 incidence as an outcome variable was collected from 229 municipalities and compiled from the KCDC and the local administration's official websites. As listed in Table 1, six area-level (i.e., municipality) socioeconomic factors were used to investigate the effects of inequality on the incidence of COVID-19 in Korea. The indicators were classified into two subcategories, SES, and economic activity, based on the corresponding attributes. SES measures included the following: national insurance contributions as the proxy of area-specific income level; material deprivation index (MDI); nonemployment rate; the proportion of basic livelihood security recipients; financial autonomy of the area. Economic activity included mobility at risk. Data on national insurance contributions in the first quarter of 2020 were obtained from the Korean National Health Insurance Services. MDI for each area was a composite index derived from the sum of standardized Z-scores for eight measures based on data from the national population and housing census conducted by the National Statistical Office of Korea; the proportion of nonemployed males, manual laborers, households under the minimum housing standard, nonsecured housing tenure, nonapartment housing, lower educational level (≤middle school), single-parent household and school dropouts between 9 and 24 years of age (24). The higher the MDI score, the more the area is deprived. The nonemployment rate was calculated as the proportion of individuals who were unemployed or out of the labor force (e.g., early retirement, studying, and disability) between 30 and 64 years of age (25), based on data from the National Population and Housing Census in 2015. The proportion of basic livelihood security recipients at the area level in 2019 was retrieved from the Korea Social Security Information Service. Financial autonomy for each area was defined as a ratio of total revenue generation to the total expenditure per municipality as provided by the Korean Statistical Information Service for 2019. To determine the socioeconomic strata of socioeconomic factors, those continuous values of socioeconomic factors were converted into quintiles of their distribution (i.e., each stratum accounted for 20% of the number of municipalities) (26). In addition, the municipality-specific economic activity variable, including the volume of traffic for mobility at risk represented by a Z-score, was added. Mobility at risk was equal to the proportion of the traffic volume of work-related movement utilizing public transportation, which was calculated by multiplying the volume of public transportation and the volume of works-related traffics (e.g., commuting to work and field trips). This variable was obtained from a transportation survey conducted by the Korean Transport Institute in 2018. Finally, three covariates, namely, municipality-specific median age, population density, and the number of healthcare workers per 1,000 inhabitants, were used to adjust for the demographic composition and the local health care capacity of the areas in our analysis. The variables were derived from the data obtained from the Korean Statistical Information Service for 2020. The data in our study were extracted from open sources, which are aggregated by administrative subdivisions. Therefore, do not contain any information that is indicative of information about personal or household level. The Institutional Review Board (IRB) of Korea University granted an exemption for this study (IRB exemption number: KUIRB-2020-0297-01). --- Statistical Analyses Several steps of the analytical process were applied to examine socioeconomic inequalities in COVID-19 incidence. Due to the nature of spatial data, spatial autocorrelation on the SES variables and three covariates were examined using Global Moran's I test before investigating the association between SES measures and COVID-19 incidence. The statistical significance of the Global Moran's I was estimated with 999 simulations. Following identification of the presence of spatial autocorrelation in socioeconomic indicators, the association between socioeconomic measures and COVID-19 incidence was estimated as an incidence rate ratio (IRR) using a spatial negative binomial model with marten correlation function for spatial correlation term (Model 1). To account for potential confounding factors, adjustment was initially made for three covariates (i.e., median age, population density, and healthcare workforce at the area-level) (Model 2). In addition, we conducted a regression with a further adjustment for economic activity to evaluate the mediating effect of mobility on the association between area-level SES and COVID-19 incidence (Model 3). We built a Bayesian generalized linear model to estimate the posterior marginal distribution of IRR of each SES measure. Because the observed incidence rate by the municipality, used as the outcome of interest, was overdispersed, it was modeled as a negative binomial random variable with overdispersed variance instead of Poisson regression. In addition, the Besag, York, and Mollié (BYM) model was used to account for spatial autocorrelation of residuals by adding a spatial random effect using intrinsic conditional autoregressive (iCAR) function and extra residual term for spatially independent variation that was independent, identical, and normally distributed as follows: Y i ∼NB (π i ,r i ) ,Y i : Number of COVID -19 cases by municipality i π i = r i r i +λ i ,E (Y i ) =λ i log (λ i ) =α+log population i +β 1 ×SES i,k + N j=2 β j ×covariate i +u i +ε i u 1:229 ∼ICAR W,σ 2 u ε ∼N 0,σ 2 ε u ∼N0, I-C -1 ×M,C=γ ×W,M=I× σ 2 u where u i is the conditional autocorrelation regression term, the covariance matrix of the parameters calculated based on the neighboring regions, ε i is the nonspatial structured term, u is the spatial correlated random effect calculated by averaging neighboring random effects, I is the identity matrix, and W is the spatial weights matrix constructed by an inverse distance function with the exponents followed by row-standardized such that each row sums to 1 for interpretation of the parameters (27). The neighboring region at each municipality was defined as the administrative division located within the geographical distance that was not spatially correlated in a variogram generated using a Bayesian generalized linear model without the spatial correlation term. The spatial correlation parameter denoted as γ was set to 1. The models were run with three chains with different starting values in which sampling values in the MCMC process with a burn-in of 4,000 iterations and a thinning rate of 10, and 50,000 iterations were used for each posterior distribution of parameters for SES and covariates. Convergence of the chains was assessed by visual inspection of the posterior distributions and computation of the Gelman-Rubin statistic. The Deviance Information Criterion (DIC) was used to measure and compare the goodness of fit for the model. The prior distribution for each parameter and hyperparameter is described in the Supplementary Material. R2WinBUGS R software package version 2.1 (28) with WinBUGS software version 1.4.3 was used to carry out given statistical approaches (29). The map presented in this study was created by Esri ArcGIS software version 10.8.1 using the South Korea map which is publicly available (30). All analyses were separately performed for two different phases of the COVID-19 pandemic; the low and rebound phases. We repeated a similar analysis to estimate the relative index of inequality (RII) as a supplementary measure of inequalities in the COVID-19 incidence rate at the area level. RII is a commonly used measure of health inequalities that summarizes the distribution of a health outcome measure against an SES as a relative difference of the least and most deprived subgroups (31). RII in this study corresponds to the relative risk of the incidence for COVID-19 in the lowest and the highest socioeconomic strata and, therefore, is directed by changes in two strata (Supplementary Material). The RII was also estimated using a spatial negative binomial model with marten correlation function for spatial correlation term, 95% CI was estimated by bootstrap. RII estimation was made as follows. Y i ∼NB (π i ,r i ) , Y i : Number of COVID -19 cases by municipality i π i = r i r i +λ i ,E (Y i ) =λ i log (λ i ) =α+log population i +β 1 ×SES i,k + N j=2 β j ×covariate i +u i +ε i u 1:229 ∼ICAR W,σ 2 u ε ∼N 0,σ 2 ε u ∼N(0, (I-C) -1 ×M), C=γ ×W,M=I×σ 2 u where x i denotes the mid-point of municipality i in socioeconomic class k with number 1 assigned to the highest class of SES, as opposed to the lowest strata. The mid-point was derived for each SES class. In addition, SES variables are likely to be mutually correlated. Thus, Spearman's correlation coefficient between two paired SES variables was estimated to exclude the correlated combinations for subsequent multivariate analyses. --- RESULTS --- Overview of COVID-19 Incidence and Socioeconomic Characteristics The COVID-19 epidemic in Korea showed two distinctive phases in terms of the incidence level over the study period as illustrated in Figure 1 Geographically, a significant difference was observed in the area-level COVID-19 incidence rate as shown in Figure 2. On average, 12.7 cases were reported per area [minimum (min) -maximum (max) = min -max = 0-127 cases] in the low phase and 177.1 cases (min -max = 0-1,653 cases) were reported in the rebound phase. The majority of COVID-19 cases were reported in the Seoul metropolitan area (81.8% in the low phase and 72.8% in the rebound phase) where 50.28% of the total Korean population resides within 11,851.26 km² (11.8% of the land size of Korea). The average nonemployment rate was 13.9 and 4.9% of households received basic livelihood security (Table 2). All variables, in particular, economic activity, showed significant spatial autocorrelation in the Global Moran's I test indicating that the association of those variables with COVID-19 should be measured with consideration of spatial autocorrelation. Generally, socioeconomic measures were significantly correlated with each other (Figure 3) but heterogeneous in direction. For example, national insurance contributions as the proxy of personal income level had a negative correlation with indicators of social exclusion and poverty [e.g., MDI (Spearman coefficient = -0.84], the proportion of basic livelihood security recipients [Spearman coefficient = -0.75), and the nonemployment rate (Spearman coefficient = -0.13)]. Notably, a negative correlation of economic activity (i.e., mobility at risk) was observed with indicators of social exclusion and poverty such as the proportion of basic livelihood security recipients (Spearman coefficient = -0.38) but not with nonemployment rate (Spearman coefficient = 0.69), and a positive correlation of mobility at risk was shown with national insurance contribution (Spearman coefficient = 0.69), indicating economic activity (i.e., mobility at risk) was characteristic of affluent areas. The incidence rate ratio (IRR) was estimated using a Spatial and Bayesian negative binomial model with marten correlation function and BYM for spatial correlation term, 95% confidence interval was estimated by bootstrap, denoted in the parenthesis. † Model 1: unadjusted model. ‡ Model 2: socioeconomic indicators were remained to estimate the associations, adjusting for covariates (human density, median age, and health care workforce). § Model 3: two significant variables in Model 2 were retained to estimate the associations, adjusting for covariates from Model 2+ mobility at risk, separately. In turn, the incidence rate ratio for mobility at risk returned two estimates for each of two corresponding socioeconomic status variables. The incidence rate ratio of mobility at risk in this table was given as an adjustment factor for basic livelihood security recipients variable. ¶ denotes a given value is >1. --- Associations Between Area-Level Socioeconomic Measures and COVID-19 Incidence Table 3 shows the estimation of IRR for the association between area-level SES measures and COVID-19 incidence using a Bayesian negative binomial regression. Overall, two area-level SES measures, nonemployment rate and the proportion of basic livelihood security recipients, were consistently associated with COVID-19 incidence based on unadjusted and adjusted modeling in the low and rebound phases. Specifically, in the low phase, the adjusted IRR corresponding to an increase in 1% of the nonemployment rate and the proportion of basic livelihood security recipients was estimated as 1.20 (95% credible interval (Crl) = 1.13-1.28) and 1.23 (95% Crl = 1.07-1.40), respectively (Model 2). In the rebound phase, the same SES measures presented inconsistence association with COVID-19 incidence. For example, the nonemployment rate showed a significantly negative association with COVID-19 incidence adjusted for only covariates (model 2), but for both covariates and mobility at risk (model 3), while the proportion of basic livelihood security recipients had an only univariate association with COVID-19 incidence (model 1) (Figures 4,5). An economic activity indicator (i.e., area-level mobility at risk) was positively associated with COVID-19 incidence rate in both the low (IRR = 1.67, 95% Crl = 1.26-2.17) and rebound phases (IRR = 1.28, 95% Crl = 1.14-1.44). When assessing the mediation of mobility at risk in the association between two SES measures and COVID-19 incidence, the magnitude of the associations was attenuated but remained significant in the low phase, but no associations were observed in the rebound phase (Model 3). For instance, the area with a higher nonemployment rate had a higher risk of COVID-19 incidence in the low phase (IRR = 1.61, 95% Crl = 1.09-1.25) but independent associations were not observed in the rebound phase (IRR = 1.02, 95% Crl = 0.99-1.06). When assessed with RII, nonemployment rate and the proportion of basic livelihood recipients showed a similar pattern of associations with COVID-19 incidence (Supplementary Table ). --- DISCUSSION In this study, a significantly positive association was found between area-level nonemployment rate and the population share of basic livelihood security recipients and COVID-19 incidence. However, area-level socioeconomic effects were stronger in the low phase when the prevalence of COVID-19 was low, with less strict governmental measures (Figures 4,5). In other words, the strength of the association of those SES measures decreased as the level of COVID-19 incidence rate across the country increased. Similarly, the inequalities in the COVID-19 incidence rate concerning nonemployment and basic livelihood security recipients were significantly high in the low phases. In addition, higher mobility at risk, indicating active economic activity at the area level, increases the risk of COVID-19 incidence in both phases. In this context, when both area-level SES measures and mobility were simultaneously adjusted, SES measures remained significant in the low phase, suggesting they were independent of each other in the low-risk period. However, in the rebound phase, adjustment for economic activity variables showed no association between SES measures and COVID-19 incidence. Overall, partial existence of COVID-19 inequalities in some measures may have occurred as a result of counteraction between risk raising and lowering area-level effects (e.g., poor communities are less mobile). Among five measures of area-level SES, the areas with a higher level of basic livelihood security recipients and nonemployment rate showed a higher risk of COVID-19 incidence; however, an association was not observed for other area-level socioeconomic measures. A partial observation of area-level socioeconomic inequalities in COVID-19 incidence differs from most previous studies from the United States (32), the United Kingdom (20), and Spain (33,34), and is similar to a previous Korean study (35) in which no or a partial association was observed. Inconsistency in inequalities in COVID-19 incidence across measures may possibly be interpreted using the socioeconomic context of Korea. Korean government measures were impartially imposed regarding case-identifying processes, awareness of the process, access to COVID-19 testing, and contact tracing, which may provide a relatively equal chance of being diagnosed. Close supervision by national mandatory conduct systems was uniformly applied regardless of area-level SES. This universal approach is not exclusive to Korea, but the outcome may be proequity in countries with high levels of public support for strong governmental measures. In addition, inequalities may be greater in places where COVID-19 diagnostic testing is often delayed, and choosing which patient to care for first is an issue when the number of patients is overwhelming (36). In contrast, Korea has maintained a lower COVID-19 incidence by enhancing rigorous contact tracing and extensive testing with no discrimination, which may have minimized some forms of socioeconomic disparity across areas. Inconsistent inequalities may be also explained by different conceptualizations of the five area-level SES measures. Basic livelihood security recipients are mostly older adults, and the age composition of this measure better reflects diagnosed COVID-19 cases; the majority (35.1% in the low phase and 31.6% in the rebound phase) were older adults (≥60 years of age), according to the Korea Central Disease Control Headquarters (http://ncov.mohw. go.kr/en/). This finding is in agreement with an individual-based Korean study in which higher SES was associated with higher COVID-19 incidence in the older population, and both higher and lower SES were associated with the younger population (37). Similarly, the area-level nonemployment rate largely depends on the proportion of individuals who are not in the labor force. However, the national health insurance premium and financial autonomy address directly the income level of the working population. The deprivation index is a composite measure developed using six variables of material circumstances. Deriving the material deprivation index by assigning the same weight to each individual variable may mask socioeconomic patterns existing in the COVID epidemic (18). In this study, a high level of mobility was associated with an increased risk of COVID-19 incidence, consistent with recent studies from the United States. However, this study results are in contrast to previous studies in terms of which areas are more mobile. In most previous studies, socioeconomically disadvantaged areas were reportedly more likely to have higher mobility (9,10); however, this study results showed that a high level of mobility was characteristic of affluent areas in Korea. This finding is understandable because mobility using public transport is concentrated in densely populated areas in the capital and large cities in Korea and within-city mobility is distributed across places of social gatherings and business meetings. High mobility observed in affluent areas may offer another plausible explanation as to why socioeconomic inequalities differ based on the measure. Collectively, area-level socioeconomic disadvantages concerning COVID-19 incidence were mixed with lower economic activity in poor communities. Notably, when simultaneously adjusted for mobility, SES measures of basic livelihood security recipients and the nonemployment rate remained significant in the low phase but not in the rebound phase. This result indicates that mobility is a major contributing factor to the association between area-level SES and COVID-19 incidence in the rebound phase, but mobility alone does not fully explain the association; other vulnerabilities (e.g., a larger poor older population) are likely to be involved. The area-level socioeconomic effect was stronger in the low phase, when the prevalence of COVID-19 was low, with less strict governmental measures, indicating that the area-level socioeconomic gradient is less likely to affect the variation in COVID-19 occurrence. Hypothetically, the socioeconomic inequalities in COVID-19 incidence were not exacerbated in the rebound phase. A larger inequality in the low phase may be attributed to people in poor communities being less responsive to an initial spread of COVID-19 when government public health measures were not sufficiently implemented nationwide. With progression to a widespread stage (rebound phase), the Korean government launched the testing and contact tracing system as a key part of the control strategy. The relatively effective performance of the strong government measures, with public compliance, applied in a nondiscriminatory manner, irrespective of SES, led to subsequent improvement in regional variations in incidence. The strength of this study includes the use of nationwide incidence data and various socioeconomic measures. In particular, concurrent use of SES measures with mobility measures enabled us to obtain a better-fitted model and identify any existing associations. This study had several limitations. First, the mobility measure was obtained from the previous year and does not reflect the mobility changes induced by the COVID-19 pandemic. However, to some degree, the use of previous mobility data may serve as a proxy indicator in this interpretation because mobility change depending on SES appears minimal in Korea. The only study in which the average mobility patterns were compared during the COVID-19 period in Korea showed no significant change in mobility shaped by socioeconomic differences (38). Second, the findings in this study are limited to area-level interpretation, due to the inherent nature of ecological studies, which could not be directly applied at an individual level. Third, the variables associated with living conditions, such as poor hygiene conditions and overcrowding, could not be included due to data availability, although this would be relevant information regarding the association between SES and COVID-19 incidence. Furthermore, it is noteworthy to investigate the impact of inequalities on the incidence of COVID-19 in countries with a relatively lower number of cases and during the post-vaccination period to understand the direct effect of SES disparity on the infection adjusted for vaccination coverage. In conclusion, COVID-19 does not occur randomly but follows socioeconomic patterns; socioeconomic inequalities in COVID-19 incidence occur concerning the unique context of a society in response to the pandemic. Despite similar contexts, each SES measure represents a specific factor and has a different ability to identify socioeconomic stratification caused by COVID-19. In Korea, where government control measures were effectively applied, with high compliance and with relatively low incidence, SES measures, such as basic livelihood security recipients, reflecting age stratification, may be preferable. Mobility was associated with COVID-19 incidence and partly explains the correlation between area-level SES and COVID-19 incidence during a high incidence period in countries such as Korea, where mobility is characteristic of affluent areas. The results confirm the necessity for emergency policy priorities concerning the older population in disadvantaged areas, including faster vaccination, and underscore a further need for socioeconomic support, including emergency relief funds. --- DATA AVAILABILITY STATEMENT The original contributions presented in the study are included in the article/Supplementary Material, further inquiries can be directed to the corresponding author. --- AUTHOR CONTRIBUTIONS D-sY conceived and designed the study. D-sY and MK acquired the data and wrote the original draft. MS and N-KS supported data collection. MH contributed data standardization. D-sY performed analyses. BC, MH, MS, N-KS, and SK edited the subsequent drafts. All authors read and approved the final manuscript. --- SUPPLEMENTARY MATERIAL The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fmed. 2022.840685/full#supplementary-material --- Conflict of Interest: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. Publisher's Note: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

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Equity in AgeTech for Ageing Well in Technology-Driven Places: The Role of Social Determinants in Designing AI-based Assistive Technologies

AgeTech involves the use of emerging technologies to support the health, wellbeing and independent living of older adults. In this paper we focus on how Ag-eTech based on artificial intelligence (AI) may better support older adults to remain in their own living environment for longer, provide social connectedness, support wellbeing and mental health, and enable social participation. In order to assess and better understand the positive as well as negative outcomes of AI-based AgeTech, a critical analysis of ethical design, digital equity, and policy pathways is required. A crucial question is how AI-based AgeTech may drive practical, equitable, and inclusive multilevel solutions to support healthy, active ageing. In our paper, we aim to show that a focus on equity is key for AI-based AgeTech if it is to realize its full potential. We propose that equity should not just be an extra benefit or minimum requirement, but the explicit aim of designing AI-based health tech. This means that social determinants that affect the use of or access to these technologies have to be addressed. We will explore how complexity management as a crucial element of AI-based AgeTech may potentially create and exacerbate social inequities by marginalising or ignoring social determinants. We identify bias, standardization, and access as main ethical issues in this context and subsequently, make recommendations as to how inequities that stem form AI-based AgeTech can be addressed.

Introduction AgeTech refers to the use of technologies and services to support aging. The new generation of AgeTech encompasses emerging and advanced technologies in areas such as artificial intelligence (AI), robotics, machine learning, e-health, and mobile technologies to support the health, independence and well-being of older people (Sixsmith, 2021). AgeTech has been explored in terms of supporting older people to remain at home for longer (Verloo et al., 2020), to provide social connectedness (Baez et al., 2019), support wellbeing (Astell et al., 2016) and mental health (Andrews et al., 2019) and connect the older person to their wider community (Fleming et al., 2018). However, the use of technology to provide support for older people to age well in place may also bring with it the potential to increase inequalities in access to health and health outcomes for vulnerable and marginalised people. This is especially the case when the needs and resources of individuals as well as groups are not fully acknowledged, when their characteristics are reduced to oversimplified or stereotypical narratives, and when barriers to equitable access exist. Thus, technology design and its functional requirements necessitate deeper insight into the range of diverse factors that may shape its context of use. Research has indicated a crucial need to fully understand who and in what ways emerging and advanced technology interventions such as AI can have positive benefits for older people, or further exacerbate experiences of marginalisation (Sixsmith, 2006). A critical discussion of ethical design, digital equity, and policy pathways is required if we are to fully understand the positive and negative intended and unintended consequences of AI as an AgeTech solution to drive practical, equitable, and inclusive multilevel solutions to support healthy, active ageing. Regulations and the accompanying policies are without a doubt crucial instruments when it comes to avert harm from vulnerable groups, safeguard their civil rights, and avoid marginalisation. However, apart from the rather passive or reactive view that regulations and policies should act as a protective shield, a more active approach could be taken in regard of technology design and implementation. In order for AI-based AgeTech to realise its full potential, the focus on equity is key. Equity -as it pertains to the changing digital landscape -is defined in this paper as fairness and equality of access and use of AgeTech regardless of the myriad social characteristics which one holds, that combined, may create social disadvantages. As a mechanism to help to ensure equity by this definition, the threshold of having meaningfully addressed AgeTech can be achieved by (Fang, 2018;Fang et al., 2019): (1) assessing the intended and unintended positive and negative consequences of AgeTech; (2) considering who is most likely to benefit from AgeTech; and (3) responding to the challenges of those who experience the most significant barriers to access and use. To help to ensure AI-based AgeTech to truly support an independent lifestyle and improve the quality of life of older adults, these technologies need to be designed in a way that enables agency as well as social participation. Therefore, equitable access has to be a key feature of AI-based AgeTech. The precondition for this is to acknowledge the diversity of older adults and to tailor technologies to their multifaceted needs and resources. Equity should thus be an explicit aim of designing AIbased AgeTech, and not just seen as an extra benefit or minimum requirement. This approach does not only aim at protecting older adults against the possible negative effects of AI-based AgeTech. It actively addresses the social determinants of health as defined by the WHO as non-medical factors that influence health outcomes by shaping the daily life and social situation of a person (WHO, 2010) (such as age, ethnicity, gender, socioeconomic status, and level of education) which may create experiences of marginalisation. We will explore how a particular facet of AI systems 1 3 -complexity management -can potentially create and exacerbate social inequities, and subsequently, make recommendations as to how inequities that stem form AIbased AgeTech can be addressed. Although clinical as well as legal issues may also arise in this context, our specific focus is on the primarily ethical aspects connected to complexity management. Each of the aformentioned social determinants can be a contributing factor for marginalisation, yet in reality, we seldom see these determinants as sole factors to shape inequity. More often, they are mutually dependent. For example, lower education and belonging to a social minority often correlate with lower socioeconomic status, which in turn, can lead to poorer health outcomes in old age. Fang et al., (2019) have identified this as a "wicked" problem, in view of three key principles of intersectionality (Hankivsky, 2014): 1) Single traits such as age, gender, or ethnicity are insufficient when it comes to understanding individual experiences -as reducing individuals to a single trait results in the oversimplification of their lived accounts. 2) Social determinants are not objective or fixed categories, but are seen as fluid and flexible social constructs that vary depending on the contexts of time and place and are shaped social processes, structures, and power relations. 3) Social justice and equity are not merely add-ons, but have to be considered as crucial aspects when it comes to policy-making. --- Complexity, Complexity Management and AI A main ethical issue when it comes to AI-based AgeTech in the light of interconnected social determinants is complexity management. AI-technologies are built to detect patterns in large data sets and derive algorithms for predicting future events or controlling processes. In AgeTech, AI-technologies face the inherent complexity and unpredictability of everyday behaviors, situations, and contexts. For AI systems to operate within the current technological limitations, it is essential that complexity is managed, which often means reducing complex aspects to simple factors. Complexity management thus means to align the data with a given framework for processing it, which often means to standardise, decontextualise, and quantify data. This can become a problem when qualitative and context-rich data is reduced to manageable data formats, thus losing some of its crucial features. This is not merely a technical, but primarily a social and ethical issue, since it affects the way we are dealing with diversity in society and the specific needs and resources of individuals. Complexity in this context however does not only refer to different contexts of use, but also to the variety of user characteristics. Here lies the connection between complexity and vulnerability: the diversity of users regarding the aforementioned social determinants causes complexity, which in turn poses a problem that AI-based systems try to resolve by reducing complexity. Therefore, AI-based AgeTech aimed to support the personalisation of services may inadvertently do the exact opposite and thus posing a risk to vulnerable groups. In order to analyse ethical issues connected to complexity management, we suggest examining the way social determinants are represented in the data that is used, 1 3 how social determinants are taken into consideration when processing data, and how social determinants may shape the use of technologies that operationalise the data. Therefore, we identify three dimensions of ethical issues: The inappropriate representation of social determinants may cause flawed or stereotypical concepts od user characteristics or bias. The context-insensitive procession of data, i.e. an oversimplifying or reductionist approach, may lead to standardisation of user characteristics. Ignoring social determinants in technology use may negatively affect access to these AI-based AgeTech. Complexity management thus has three crucial aspects which we explore in more detail in the following sections and, subsequently, recommend strategies for dealing with the issues at hand: • Bias-Bias in relation to certain social characteristics may be introduced into AI systems at different stages in the development and innovation process, such as in the AI training data that is used or decisions made regarding the commercialisation and marketing of products and services. • Standardization-the problematic aspect here is the underlying assumption that objective parameters can be defined and operationalised to identify and respond to ambiguous behaviors and situations. • Access-Some AI-based technologies are designed in a way which makes them difficult to use by some individuals and groups. --- Complexity Management and Bias Bias is one of the most fiercely debated issues in AI-based technologies (Challen et al., 2019;Mittelstadt & Floridi, 2016;Neven, 2015;Safdar et al., 2020;Wong, 2020). Bias can be a result of complexity management in two ways. Firstly, algorithm-based systems strongly rely on training data that has been used in their development. These systems learn by processing large amounts of this training data, detecting connections and patterns, and inferring general rules. The quality of the training data thus determines the quality of the algorithm-based system. The training data is usually taken from large cohort studies (Jones et al., 2018), in which certain social groups are often notoriously underrepresented. As a consequence, the bias within the training data is transferred into the system, leading to a biased algorithm. Thus, the needs and resources of various social groups are not considered by the system. Secondly, AI-based systems and hardware devices are produced on a certain scale in order to be cost-efficient. In order to make the product suitable for a certain mass of users, complexity management regarding concepts of old age is necessary. Further, by way of complexity management, the risk of so-called age scripts arises, consequently, stereotypical concepts of what it means to be older aged, regarding needs and resources of older adults, are inscribed into the technology. --- 3 Training Data AI-systems learn by inferring algorithms from data sets (Jones et al., 2018). In order to operationalise this, the systems are fed with training data, mostly taken from large cohort studies. The more good quality training data a system is fed with, the more accurate its algorithms become. That also means that the quality of the algorithm, its accuracy and discriminatory power, depends largely on the quality of the training data, and lack thereof can lead to bias. A bias within the training data is often perpetuated in the system's algorithm, as bias and complexity management often go hand in hand. This is largely due to the fact that prior to processing for analysis, the data is decontextualised, meaning as part of data preparation, the data becomes separated from its specific spatial, temporal, or social determinants. Racial bias is a prominent example for the connection between complexity management in the shape of decontextualization and bias. Obermeyer et al. (2019) have demonstrated this connection in a striking way upon analysing an algorithm used within the US health services. The task of this algorithm was to identify people with complex health needs. The algorithm assessed individual health costs and predicts future costs. It followed the basic assumption that individuals where more health costs have been invested in the past, have higher health needs and should therefore have easier access to health services. As a result of challenges that stem from socio-structural, and historical issues, when less health spending are applied in certain groups (i.e., African-American people), the algorithm assigns them a lower risk-score. This example demonstrates that the inherent technological need to reduce complexity in order to process data efficiently may lead to bias and thus conflict with the basic goal of providing enhanced personcentred health care. The result is a harmful feedback loop whereby health disparities manifest themselves in training data that do not represent social realities. Biased algorithms and predictive models are subsequently built based on these training data which can in turn aggravate the structural discrimination already inherent in the healthcare system (Walsh et al., 2020). --- Age Scripts AgeTech relies on specific concepts of age, a narrative that defines characteristics of older adults as well as what age means. These age scripts are written into AgeTech and define the scope and purpose of the technology (Peine et al., 2015). Age scripts can be developed based on various sources such as societal views, design traditions, or individual interpretations (Peine & Neven, 2021). This implies a certain risk for stereotypical or poorly-informed views about older adults, their needs and resources, and their desired way of life becoming the basic design framework of AgeTech. Usually, such ageist stereotypes present older adults as 'problem focused' which assumes older people as a homogeneous group with associated traits such as frail, vulnerable, and in need of help (Ayalon & Tesch-Romer, 2018). The notion of age is fundamentally viewed as a problem to be solved by AgeTech (Rubeis, 2020). Although enabling agency is the intended goal, limitations arise when fundamental concepts and purposes of AgeTech are not determined with the end users (Neven, 2015;Peine et al., 2015). The result is the emergence of a sense of 'benevolent paternalism' that 1 3 predefines the appropriate lifestyle of older adults without including them in the design process (Manzeschke et al., 2016). This is especially the case when digital equity was not considered as part of the intended goal. Focusing on equity may help to diversify training data as well as the basic scripts that are written into the technologies. It is especially important to acknowledge that older adults do not constitute one homogenous group, but a diverse population who are shaped by a complex interplay of social determinants. --- Complexity Management and Standardisation Standardisation means that certain parameters must be predefined for AI based systems to process. For example, a crucial parameter in some systems for fall detection is gait pattern (Piloto et al., 2018). These particular systems measure the typical gait pattern of a person, and whenever the gait pattern changes and/or there is a deviation from the standard, the system interprets this as a sign for an impending fall. The system may then trigger an alarm and inform caregivers. The issue here is not so much the definition of a standard as such since it is defined on the basis of a person's individual health data. What is problematic, is the fact that specific parameters are defined as objective indicators of health and well-being. This suggests that primarily qualitative categories like well-being can be easily quantified by choosing the right parameters. This is an oversimplification that ignores the rich contexts of a person's attitude towards well-being, health, and others, which forces them to adapt to prefixed definitions of well-being. In the fall detection example and as seen in other examples, this may not seem like an issue since it is quite reasonable to define gait pattern as a parameter for assessing the fall risk. Another example is systems that recognise whether shutters are open or closed, and if closed, how long they remain closed during daytime. In this case, systems that draw conclusions based on the mental health status of a person because closed shutters throughout the day may imply a mood change, or even a depressive episode. It becomes clear that in this case, complexity management (closed shutters equals depression) can lead to a standardisation of behaviour. Standards and standardised parameters play a key role in all data-driven technologies. The scope and characteristics of data that are deemed as useful or viable depend on the parameters for measuring them. In the context of digital health, the main parameters are digital biomarkers. Biomarkers are biomedical or behavior-related indicators used to measure, predict, or evaluate health-related outcomes (Guthrie et al., 2019;Sim, 2019). Raw data as detected by sensors are of no use for health care professionals without predefined biomarkers that allow for scaled and contextualised data. Digital biomarkers are therefore crucial for personalised interventions such as AgeTech. In AgeTech, digital biomarkers may be used in sensor technologies, either in smart home sensors or smart wearables, in order to measure and predict changes in symptoms and behavior. Digital biomarkers have to be defined, meaning that a certain trait has to be singled out and deemed as a viable indicator. This may not be problematic in a biomedical context, e.g., determining blood pressure as biomarker for cardiovascu-1 3 lar health. However, even in this context, blood pressure would first and foremost be seen as one factor amongst others with which it interacts and thus constitutes cardiac health. Regarding individual behavior, it is even more difficult to define clear-cut biomarkers. One example is a framework for recognising and regulating emotions in older adults presented by Castillo et al. (2014). The framework consists of sensors that measure physiological signals, facial expression, and voice in order to determine the emotional status of a person. A social robot reacts to these emotions and the color, lighting, and music in the room is adapted in order to enable positive emotions. In this setting, certain facial expressions for example are defined as indicators for a certain emotional state. A certain colour scheme or music is defined as a means of regulating emotions. The underlying assumption is that clear-cut parameters can be defined for distinguishing between positive and negative emotions as well as for regulating the negative ones. This blurs the line between support and conditioning, i.e. the regulation of a person's conduct. Conditioning signifies an action directed at creating a specific behavior that is deemed as appropriate or desirable. For example, some stakeholders may have a personal interest in reducing costs of health care services. Thus, instead of modifying health care services to address the specific needs of individuals, methods of conditioning could be applied in order to shape the individual to fit the most cost-effective service. Taking the aforementioned example, the use of technology for regulating emotion may be understood as a way to achieve a certain behavioural standard which offers cost-effectiveness as opposed to providing personcentred care and tailored services. The same method could be applied to condition people to eat healthy or exercise in order for cost-saving purposes. Conditioning has already been recognised as a risk in AgeTech (Hummel & Braun, 2020;Manzeschke et al., 2016;Mortenson et al., 2015;Petrakaki et al., 2018;Rubeis, 2020). What is seldom discussed is the connection between epistemological and ethical aspects in this context (Morley & Floridi, 2020). According to this view, the problem resides in the underlying assumption that objective parameters can be defined for appropriate or desirable emotions and behavior. There is a certain practical and ethical risk of creating parameters deliberatively designed in order to produce a specific behavior -a type of nudging (Thanler & Sunstein, 2008) that contradicts to the goal of person-centred care. An equity-focused approach could minimise the risks of standardization by taking the diversity of user preferences, needs, and resources into account, thus providing a more balanced and person-centered baseline for technology design. --- Complexity Management and Access Another ethical quandary of complexity management is that it manifests itself by way of optimal AI design with limited consideration for issues relating to access i.e., lack of cultural appropriateness. "Culture" in this context may refer to certain codes, concepts, and behaviors that stem from the ethnic identity of older adults. It may, however, also be understood in terms of the life experience of certain generations. As such, the way in which individuals have been exposed to technology across their lifespan influences their attitudes and behaviour towards AgeTech in old age. Tech-1 3 nology that is designed without consideration for cultural appropriateness can mean that they are more difficult to access resulting in reduced uptake. Aligned with the issue of access is usability, and links to cultural appropriateness. For example, digital literacy, more precise the lack of it, can be an access barrier when it comes to AI-based AgeTech. This is especially the case with technologies that require direct interaction, like human-machine interfaces (HCI) or technologies for self-management and self-monitoring common in mHealth and telehealth (Fang et al., 2018). The lack of experience with digital technologies or affinity towards their use may thus prevent older adults from accessing them (Fang et al., 2019). Empirical evidence shows that digital literacy and health outcomes correlate with education, age, gender, and socioeconomic status (Ang et al., 2021). The need for complexity management in AI-based AgeTech also affects access to AgeTech. One important factor in this regard is diversity within the older population (Fang et al., 2018;Haufe et al., 2019). Older adults vary not only in health status, ethnicity, and socioeconomic status, but also in health literacy and affinity to technology. These factors often interact and create a dynamic that may prevent access to AgeTech. As a result, the most complex outcomes of digital health disparities arise across social intersections, e.g., between age, gender, ethnicity, and socioeconomic status (Fang et al., 2019). Studies show that people over 65 have generally less desire and intent to use ICTs (Fang et al., 2018 b). Especially older adults with less exposure to technology throughout their work life show a lower uptake of digital health technologies (Fang et al., 2019). Other reasons that impact technology use are health-related. Co-morbidities and functional disabilities, e.g., vision impairment or difficulties in memorising passwords, are barriers to digital access in this regard (Chen & Chan, 2013;Fang et al., 2018). This is especially the case when interfaces and systems lack the appropriate level of user-friendliness (Haufe et al., 2019). AgeTech access and uptake is further complicated when gender is added i.e., as another layer of social complexity. In general, women use ICTs less than men, but more often for health purposes than men. Education, socioeconomic status and age are associated in this regard, since younger, more educated women are more likely to use ehealth than older, less educated men with low incomes (Fang et al., 2018). Last, individual beliefs, attitudes, and fears of technology are associated with age and generation and often play a role in preventing older adults from using AgeTech (Chen & Chan, 2013;Fang et al., 2018;Haufe et al., 2019). Older adults often consider themselves as incapable to handle the technologies due to the aforementioned factors and their perceived age or lack of digital competencies. As well, internalised-stigma including negative self-perceptions of being frail and in need of help when using AgeTech hinders technology use (Haufe et al., 2019). Such beliefs and attitudes may be the result of lack of experience with technologies, educational status, with the root of such perceptions shaped by intersectional social factors such as ethnicity, gender, and socioeconomic status. As a consequence, the interplay of all of these technology deterrents creates a situation where individuals who can benefit the most from AgeTech are the same that people who experience the greatest access barriers (Fang et al., 2018a). A key explanation for this may be that the combined effect of social determinants is overlooked 1 3 when designing AgeTech. Thus, a focus on equity already in the design process is crucial. --- Discussion and Recommendations Although complexity management as an explicit concept has not been widely discussed so far, several strategies have been suggested for dealing with its outcomes. We will provide a short overview of these strategies, based on the main currents of the ethics of AI-based health technologies in the research literature. These strategies are often labelled as democratisation of AI-based health technologies and consist of at least three objectives (1) diversifying training data, models, and algorithms, (2) engaging relevant stakeholders as well as communities in design and implementation of AI-based health technologies, and (3) granting access to medical to all social groups and on a global scale. --- Diversifying Training Data, Models, and Algorithms (1) Discrimination and bias in AI-based AgeTech may be a result of ignoring social determinants when selecting training data or designing models and algorithms. This issue is mainly discussed under the header of algorithmic fairness (Wawira Gichoya et al., 2021). One way to address this issue is to question existing proxies and biomarkers and to include social determinants (Walsh et al., 2020) -meaning that the socio-demographic contexts in which data has been collected must be considered. Furthermore, various social determinants should be actively integrated into the data procession process. This means that when selecting data sets for training, there needs to be assurance that the data does not focus exclusively on one social group. The epistemic scope and limits have to be evaluated based on the quality of the data in this respect (McCradden et al., 2020). If an algorithm performs poorly for specific groups, additional data from these groups should be collected and induced into the machine learning process (Walsh et al., 2020). This implies a process of model auditing throughout the design process that focusses on the reliability and validity of models as well as the assessment of confounding errors (McCradden et al., 2020). Also, upon implementation of these technologies, a local evaluation should be conducted in order to investigate hidden stratification effects (McCradden et al., 2020). A key takeaway message is that fairness should not be an afterthought or post-hoc consideration (Wawira Gichoya et al., 2021). Rather, fairness in terms of diversifying training data, models, and algorithms should be operationalised through model reporting guidelines, clinical trial guidelines, and regulatory approaches. This is an issue for AI generally and is not limited to older populations. However, the complex intersectionality of factors contributing to aging, the prevalence of ageist attitudes, and indeed increasing heterogeneity in later life create additional challenges. --- 3 --- Engaging Relevant Stakeholders and Communities (2) Participatory methods for designing AgeTech are widely seen as ways to prevent discrimination and enable equity (López Gómez & Criado, 2021). Engaging relevant stakeholders and communities may be a crucial measure throughout the life cycle of an AI-based AgeTech product. At the research stage, the perspectives of diverse end users may be required for inclusivity training data as well as user-centered technologies (Fohner et al., 2019). By using a community-engaged approach, educational aspects as well as shared decision-making are emphasised, and mutual benefit may be achieved. This approach may also foster trust in technologies, which is a crucial aspect as it pertains to the acceptability of AgeTech (Walsh et al., 2020). Using a community-engaged approach may also help to situate AI-based AgeTech in view of context-specific healthcare infrastructures and communities. Consequently, technologies tailored for the specific requirements of a given context as opposed to a one-size-fits-all-approach can mean that caregivers and care receivers are potentially more likely to use them. (Fohner et al., 2019). However, this approach has some drawbacks. Engaging stakeholders and communities can be a challenging and often very time-consuming approach, which also means more cost-intensive. Furthermore, participatory processes need a moderation in order to integrate and balance different expectations (Merkel & Kucharski, 2019). As with AgeTech itself, there is also no one-size-fits-all-approach regarding stakeholder and community engagement. In order to choose the right approach or method, it has to be clarified why a stakeholderand community-engaging approach should be applied, what individuals or groups as well as future users will be included and at what stage of the lifecycle of the product they will be involved (Merkel & Kucharski, 2019). Another difficulty here is how to best involve older adults who are isolated, hard to reach, and who may be non-tech users in the co-development process. --- Use of Personas for User-Centered Design (2) Developing a 'persona' and 'scenario' -a technique often used in technology design to ensure that the tech product is conducive to the end-user. A 'persona' is a description of a fictitious individual based on data or information from real people (Adlin & Pruitt, 2010), while scenarios provide context of the persona, which include stories of personal experience -a setting or situation in detail which a person performs a sequence of actions (possibly involving other people) to produce an outcome. In technology design, developing personas and scenarios can be viewed as a tool for considering how products can be delivered in an ethically, socially-responsible and culturally-sensitive way. The use of personas and scenarios are intended to promote our empathy with the people who we aim to serve (Jackson & Hwang, 2020). While each of us come from different backgrounds, personas can help tap into our innate human tendency to generate detailed and complex models of people and their behaviours, even when those people are fictitious (Jackson & Hwang, 2020). This is demonstrated by the ways in which we naturally try to relate to or develop understandings about fictional characters in stories or films. Using personas in teaching can help tap into this natural human aptitude that we all possess (Jackson & Hwang, 2020). --- 3 --- Ethical and Responsible AgeTech (3) Previous research has also established that factors influencing digital marginalisation are multi-faceted and that an intersectional approach needs to be adopted to fully understand how people can be disadvantaged by the increasing reliance on AgeTech (Fang et al., 2019); and in the context of AI, identify and understand if and in what ways this technology can be created with the intent to ameliorate traditional forms of marginalisation (and for whom). There are various policy pathways considered to help to ensure AgeTech access, equity and other social determinant barriers. Stix's (2021, p. 15) notion of actionable principles for AI policy highlights how "successful actionability in policy" requires going beyond AI-based AgeTech ethics principles as a reference point, and this can be achieved, in part, by referencing transdisciplinary theoretical perspectives from disciplines of gender studies (i.e., intersectionality), urban studies (i.e., sense of place), and health sciences (i.e., digital social determinants of health). Critical analysis of existing AI design and policy by viewing the problem area through diverse theoretical viewpoints can help shed light on how we can better understand and respond to the various ways in which social positioning create distinct, and often multiple, barriers for various subgroups. According, the three AI policy pathways presented by Stix ( 2021): (1) preliminary landscape assessments; (2) multi-stakeholder participation and cross-sectoral feedback; and, (3) mechanisms to support implementation and operationalisability can be supported by integrating equity-driven theoretical models and frameworks such as the Social Justice Framework for Bridging the Digital Divide, Health Equity Impact Assessment (HEIA) tool, and the Intersectional Place Perspective for AgeTech solutions (Fang et al., 2019(Fang et al., , 2020;;Ontario Ministry of Health and Long-Term Care & Toronto Central LHIN, 2009). HEIA originated from the Health Impact Assessment methodology and has been heavily used worldwide over the past decade as a decision-making tool to facilitate the development of healthy public policy (Ontario Ministry of Health and Long-Term Care & Toronto Central LHIN, 2009). HEIA can be applied to describe the individuals and groups most affected by the progression of AI in healthcare, characterise the ways in which possible inequities can occur to support the responsible design of AI interventions and initiatives to optimise equitable access, positive ageing outcomes whilst identifying factors that may unintentionally exacerbate experiences of vulnerability and disadvantage. The Social Justice Framework for Bridging the Digital Divide framework stems from a realist review and affirms that individuals exist within structures and systems designed by and for persons in more advantageous social positions, which creates modes of differentiation across groups and divisive access to digital resources (Fang et al., 2019). This framework may be particularly useful for recognizing and responding to the multiple layers of access and use inequities that older people might experience (Sixsmith et al., 2019), when introduced to AI interventions. Last, the Intersectional Place Perspective designed to identify individual, social and place-based factors that shape opportunity and oppression, has been used to better understand the combined effects of the digital determinants of health and wellbeing (Fang et al., 2020(Fang et al., , 2021)). This theoretical model can help to characterise the ways 1 3 in which AI can compound or alleviate inequity, through consideration of socio-cultural and environmental contextual factors that shape lifetime health and wellbeing outcomes of older people -recognising the importance of intersectionality and place. Overall, such equity-driven resources can support AI developers and shape policy pathways by providing a spotlight on how digital social determinants are operationalised in real life scenarios, which can help to ameliorate inequities associated with AI design and rollout how these might be produced and utilised across different contexts, at scale and in an ethical and sustainable way. --- Granting Access (3) As we have seen, access barriers may arise when AI-based AgeTech does not fit the needs and resources of users. One strategy for fostering access is universal design, sometimes referred to as inclusive design or design for all (Ma et al., 2021). The aim is to reduce access barriers by designing technologies that are simple and intuitive and allow flexible use with a certain tolerance for error. This requires a well-informed design process that includes user experiences from various user groups. Another factor preventing certain user groups from access is contextual bias (Weissglass, 2021). Most AI-based AgeTech is designed in high-income countries and adapted to the structures as well as contexts of use within their respective health systems. The resulting technologies might not be fitting for the systemic or institutional conditions in low-income countries. Disclosure and validation policies might be instruments for ensuring that the context of technology design is made transparent (Weissglass, 2021). However, also in this regard, a more inclusive design process that takes diversity on a global scale into account would be needed. Another approach is to make algorithms as well as data-bases consisting of training data accessible on a global scale. This would provide researchers, clinicians, and developers from lower-income countries the opportunity to adapt technologies to their own respective contexts of use. Finally, empowering e-health literacy of older adults may reduce the digital gap, which is one of the main access barriers (Seifert et al., 2019). E-Health literacy could be improved by providing learning tools, e.g., through existing educational services. This would mean to acknowledge that older adults are not inherently technologyadverse and have both the resources and the willingness to learn, which is often ignored due to stereotypes about older adults. --- Conclusion AI-based AgeTech has the potential to support older adults towards living a more active, independent, and healthier life. In facilitating more personalised healthcare services, AgeTech may potentially be used not only for the purpose of dealing with deficits, but rather to improve the quality of life of users. This potential, however, can only be realised in full if equity is seen as major principle for the design, implementation, and use of AI-based AgeTech. Equity is neither an add-on nor can it be an afterthe-fact consideration. Rather, equity should be the guiding principle in developing AI-based AgeTech at the outset and should also guide its implementation as well as 1 3 the practices it enables. This requires a well-informed design process that takes the combined effect of social determinants into account, provides accompanying measures for educating users as well as caregivers, and defines regulatory approaches that address the issues of bias and discrimination. --- Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. --- Authors and Affiliations Giovanni Rubeis 1 • Mei Lan Fang 1,2 • Andrew Sixsmith 1,3 Giovanni Rubeis [email protected] Mei Lan Fang [email protected] Andrew Sixsmith [email protected]

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From suffering towards communal well-being: experiences of a Dalcroze-inspired workshop for a community in crisis

This qualitative hermeneutic phenomenological study aims to describe the meaning that members of the Parys community ascribed to their experiences of a Dalcroze-inspired workshop. Stakeholders were a number of local residents of Parys, a scenic town situated on the banks of the Vaal River in South Africa's Free State Province. Local residents were asked to share their water-related experiences at a workshop organized by a North-West University research group. It became clear from their stories that they had experienced severe stressful circumstances. They had suffered stress because of the health risks posed by polluted water and the frequent lapses in the town's water supply system. Dalcroze-inspired activities were used to facilitate this meeting. Data were collected through focus group interviews, open-ended individual interviews, photos, videos, and observations. All these data were consolidated in one heuristic unit in ATLAS.ti, a computerassisted qualitative data analysis software program. The codes were organized into categories and themes. Friese's (2014) notice, collect and think (NCT) method for computer-assisted qualitative data analysis was used. From the data analysis, five themes emerged related to the Dalcroze-inspired activities. It included: joyful experiences, which facilitated social interaction that made it possible for personal relationships to be transformed. Virtues arose from this transformation, and participants' experience was that the group engagement supported their well-being. We, therefore, argue that the Dalcroze approach can be used in communities in crisis to facilitate conflict resolution and transform relationships.

Introduction and background The purpose of this qualitative hermeneutic phenomenological study is to describe the meaning that members of the Parys community ascribe to their experiences of a Dalcrozeinspired workshop. In this project, members of the Research Niche for the Cultural Dynamics of Water (CuDyWat) at North-West University applied Dalcroze-inspired activities to create a sense of social cohesion among a diverse and randomly selected group of residents and officials of Parys. The workshop enabled them to use music and movement to express their emotions and opinions about their communal water service delivery problems. The research question that guided this inquiry was: What meanings do participants ascribe to their experiences of the Dalcroze-inspired workshop? The problem is that water resources in South Africa are running dry. There are growing concerns that South Africa, as among the 30 most arid countries in the world, with an average rainfall of less than 600 mm, may not be able to cope with erratic drought conditions, because of anticipated climate change conditions. The latest version of Department of Water and Sanitation (2021) National Water Resources Strategy (Version 3) accentuates the need for local authorities to apply water conservation demand management strategies. All municipal, industrial, and commercial water consumers need to contribute to reducing water loss as far as possible. The country' s municipal water and sanitation infrastructure systems are notorious for leaks and the wastage of costly potable water resources. The DWS now plans to actively promote water use conservation strategies (Department of Water and Sanitation, 2021;Mchunu, 2022). The town of Parys, which falls under the Ngwathe Local Municipality and operates under the jurisdiction of the Fezile Dabi District Municipality, is frequently subjected to severe water shortages. The town's water purification infrastructure cannot consistently cope with the inferior quality of raw water at its point of intake on the Vaal River. At the same time, there is an increasing demand for more municipal water due to local population growth. The town's overworked water and wastewater infrastructure systems are also subject to deterioration. Since the early 2000s, Parys has experienced extensive periods of water-quality issues and infrastructure collapses. In response to a request by a former premier of the Free State Province, the Sasolburg-based company, Sasol Limited, funded a multi-stakeholder consultation research project by the CuDyWat Research Niche at North-West University. The research team focused on the analysis of the impact that the dire water crisis in Parys had on local residents. Since people use musical experiences to create meaning during difficult times (Bonde, 2011), the research team decided to use a Dalcrozeinspired approach to engage with local stakeholders. The use of Dalcrozeinspired activities in this study is informed by previous research studies (Dutton, 2015;Habron, 2016) that highlight the positive influence of Dalcroze in promoting social transformation within individuals, local communities and the environment. These activities cultivate a desire for self-expression and communication, promoting interpersonal connections and a sense of belonging and well-being (Navarro Wagner, 2016;Sutela et al., 2016). Furthermore, our study draws on the findings from a previous study conducted in the town of Brandfort (Van der Merwe et al., 2019), which demonstrated the significant contribution of a Dalcroze-inspired workshop during a communal water crisis. The findings further revealed that the implementation of the Dalcroze approach effectively fostered a feeling of connectedness and a shared sense of purpose among the participants by making them feel welcome; promoting active engagement; becoming aware of themselves, their space and each other; promoting cooperation and playfulness; experiencing enjoyment; and enabling emotional expression concerning their communal crises. The findings of these studies motivated the researchers to employ the Dalcroze-inspired approach again, this time in a different context, Parys. This was an ideal opportunity to use Dalcroze-inspired activities as a basis for constructive communication and to interpret the perceptions of municipal water users. --- Music, health, and well-being The World Health Organization describes health and well-being as a "state of complete physical, mental and social well-being and not merely the absence of disease or infirmity" (Grad, 2002, p. 981). The positive effects of the arts on health and well-being have been studied extensively. Findings have shown that the arts can affect physical and mental health by preventing poor health, promoting good health, and managing and treating various illnesses (Fancourt and Finn, 2019). The growing body of literature on the transformative value and benefits of music for health and well-being illuminates the effective contribution of music participation to the quality of life of a community (Dillon, 2006;Hallam et al., 2012;Lenette and Procopis, 2016). MacDonald et al. (2012) developed a conceptual framework illustrating that the growing multidisciplinary interest in the relationship between music, health, and well-being could enhance musical activities' social, therapeutic, and communicative benefits. Paton (2011) states that music has a supportive function in enhancing a community's emotional, mental, physical, and social well-being that goes beyond purely musical entertainment or performance. Participatory music-making serves various social functions in the community, such as involving community members in social communication and activities, and building trust and unity among individuals in the group (Garrido et al., 2016). Music does not only play a sociocultural role but also has a significant impact on quality of life as it is "an inherently social act and one which contains enormous potential to bring people together and to facilitate various forms of social action" (Murray and Lamont, 2012, p. 76). Music making promotes the community's wellness by having a calming influence on community members in despair and discomfort; it can be used to inform community members of important health and welfare matters, and music making "can lighten the load of the suffering" (Reigersberg, 2017, p. 134). Small (1998, p. 2) uses the term "musicking" to illustrate that music entails activity and adds that meaning is generated through social and cultural interactions. Stige (2003) views health musicking as an interdisciplinary field that promotes well-being through musical participation. Musical activities in health musicking create meaning in times of hardship and teach strategies to cope with different social problems (Bonde, 2011). A health-musicking perspective supports Dalcroze-inspired activities since the emphasis is on the inter-and intra-personal relationships which develop through musicking to promote health and well-being (Navarro Wagner, 2016). DeNora (2013, p. 1) developed "a grounded theoretical account of how music can be understood to create conditions conducive to wellbeing. " The Dalcroze-inspired workshop for the community members of Parys relates to her theory in so far as the musicking provided momentary respite from distress and afforded participants the opportunity to renew their environments. --- The Dalcroze approach Émile Jaques-Dalcroze (1865-1950) was a Swiss composer, pianist, and music educator interested in training the body to facilitate inner hearing, musical thinking, learning, and understanding. He was appointed as a professor of solfège1 and harmony at the Conservatory of Geneva from 1892 to 1910 (Choksy et al., 1986). After the First World War, Jaques-Dalcroze was concerned with social reform and cohesion by encouraging students to live in harmony with themselves and those around them. He envisaged the musical expression of human emotion and created an approach that included three branches, namely eurhythmics, solfège, and improvisation; of these, eurhythmics proved to be his unique contribution (Jaques-Dalcroze, 1919). The distinctive Dalcrozian approach to musical learning involves rhythmic bodily movements in response to the elements of music. As a result, scholars develop a bodily awareness awakened by active listening and inner hearing (Le Collège de l'institut Jaques-Dalcroze, 2019). In a Dalcroze class, students explores aspects of time, space and energy through locomotor and non-locomotor body movements. Movement is the link between the ear and brain, leading the student to an embodied and deeply internalized understanding of music (Le Collège de l'institut Jaques-Dalcroze, 2019). In the Dalcroze approach, the muscular and nervous systems develop simultaneously with the body's natural rhythms, stimulated by the auditory and visual imaginations of the musical mind. This approach is explained by Juntunen (2004, p. 68) as follows: "Dalcroze Eurhythmics primarily teaches habits of musical action or, more generally, 'a bodily way of being in sound' , rather than conceptual or abstract knowledge of music. " Dalcroze envisioned making the whole human being more aware, receptive, and imaginative. This approach has spiritual, holistic, and intra-disciplinary dimensions (Habron and Van der Merwe, 2017) and is usually implemented in a group so that learners respond to one another, learn from each other, become aware of the group, and practice mutual respect (Le Collège de l'institut Jaques-Dalcroze, 2019). In the hands of a caring facilitator, the atmosphere of a Dalcroze class is a safe environment with an active, alert, and reflective approach, and participants learn by "doing" and are encouraged to take risks and develop inter-and intra-personal skills, as well as musical skills (Le Collège de l'institut Jaques-Dalcroze, 2019). In the process, they become more aware of themselves as human beings intersecting in a social ecology where music plays a formidable role in helping them articulate-through movement-how they feel and express what they experience subconsciously. Therefore, Dalcrozeinspired activities were selected as the most appropriate collaborative music-making experience since humans construct meaning from bodily experiences. The research group was particularly interested in understanding the meaning participants ascribed to their experiences of a Dalcroze-inspired workshop. By using music and movement to improve communication between all relevant stakeholders in Parys who wished to engage with the research group on the question of water-related problems, we wanted to find solutions to this critical issue in the community. In the following sections, we first discuss the research procedures, the Dalcroze-inspired workshop, and the types of activities used. Secondly, in the findings section, we interpret the lived experiences of those who participated in the Dalcroze-inspired workshop and their views on local water-delivery problems. Thirdly we discuss the findings in the context of the relevant scholarly literature. --- Procedures The best research approach to answer the research question of this study was hermeneutic phenomenology since we wanted to describe the experiences "together with its meanings" of those involved (Hendriksson and Friesen, 2012, p. 1). With this hermeneutic phenomenological inquiry, we intended to describe the experiences "all participants have in common" (Creswell and Poth, 2018, p. 75) during the Dalcroze-inspired workshop. A one-day workshop was held at Stonehenge on Vaal, a conference venue outside Parys, to ascertain first-hand views and opinions about the water situation from various stakeholders affected by this problem. The research team chose the venue because of its location just outside Parys on the riverbank. Stonehenge has two sizeable halls, where the Dalcroze music and movement session and subsequent discussions were held. The research team met there the day before the workshop to make final preparations for the next day. Invitations to participate in the workshop were randomly distributed to members of the Parys community and to specific key stakeholders identified in previous studies in Parys. The invitations were communicated verbally and via SMS, email, and fax. The verbal invitations were distributed by members of the research team, who went to different areas in Parys to alert stakeholders about the workshop. The municipal management and workers, the Ngwathe Water Forum members, and community members from Tumahole, Schonkenville, and the Parys town area were invited. The invitation indicated that the stakeholders were invited to participate in a music and movement workshop dealing with waterrelated challenges facing their community. It also explained that North-West University's Research Niche for the Cultural Dynamics of Water (CuDyWat) would facilitate the session. Stakeholders were also notified that the transdisciplinary research group was collaborating with Sasol Limited, a partner in a cooperation agreement with the Free State provincial government. It mentioned that the Free State Premier had asked for the assistance of Sasol Limited to investigate the water contamination and shortage challenges in the Ngwathe Municipality. The initial invitations were sent a week before the workshop, up to a day before the event, but did not specify the venue where the workshop would take place. As a precautionary measure to prevent potential disruptions of the event, the venue was only announced 48 h before the workshop. --- Participants Fifty-three stakeholders from Parys and its neighborhoods and eight researchers participated in the event. The transdisciplinary research team included a biochemist, banker, chemist, political scientist, two musicians, environmental engineer, and two historians. Each one was also encouraged to describe the meaning they ascribed to the Dalcroze-inspired workshop and provide their perspectives on solutions to the water problem. Therefore, there were 62 participants in this study. Two musicians organized the Dalcroze-inspired workshop in collaboration with the researchers and rehearsed a possible version of the workshop with the researchers the day before. The Parys workshop commenced with a two-hour Dalcroze-inspired session. The purpose of this workshop was to give an opportunity for the expression of emotions about the water challenges through music and movement and to promote creativity, communication, and problem-solving. The Dalcroze-inspired workshop generated a unique opportunity for the diverse participants representing different stakeholder sectors in the community of Parys to interact with each other. Frontiers in Psychology 04 frontiersin.org Following the Dalcroze-inspired session, the water meeting focused on participants sharing their encounters regarding the water dilemma. Participants were then asked what action they would take to address the water situation if they were the municipal manager of Parys. The positive emotions generated by the Dalcroze approach broadened their minds (Fredrickson, 2013) and facilitated creative problem-solving. Their suggested solutions were included in an unpublished research report conducted for Sasol Limited on behalf of the office of the Free State Premier. Lastly, the participants were asked what meaning they ascribed to the Dalcroze-inspired workshop. Although some members were initially hesitant when invited to participate in a Dalcroze-inspired movement-to-music session, they were fully prepared to share their deepest feelings with us openly and transparently. The group developed a strong sense of togetherness, and participants could exchange their opinions. This article reports all the findings related to the Dalcroze-inspired workshop. --- Ethics statement A pre-defined, ethically approved framework guided the research team's actions. Significant effort ensured an inclusive communication platform between the stakeholders and researchers. Informed consent was obtained from each participant before the workshop to ensure we could use the data for research. Furthermore, pseudonyms were used to ensure participant anonymity and confidentiality. A feedback session with the stakeholders took place six weeks after the workshop to give them an opportunity to give input. --- Data collection The data-collection process continued during the workshop. While the Dalcroze-inspired workshop was in progress, data were captured of the group in action using photos, videos, sound recordings, and active information gathering by means of notes taken by members of the research team. Data were also collected through focus group interviews and open-ended individual interviews. The objective was to use diverse data collection strategies to glean relevant information on the perceptions and opinions of community members. Immediately after the Dalcroze-inspired workshop, when the focus group interviews were conducted, participants were specifically asked: What meaning do you ascribe to your experiences of the Dalcrozeinspired workshop? --- Data analysis All data generated during the workshop were qualitatively interpreted as the data were coded, categorized and thematised. The textual data were organized and coded in one heuristic unit in ATLAS. ti, a computer-assisted qualitative data analysis software program (Friese, 2014). ATLAS.ti is a useful tool to organize, manage and support the process of qualitative data analysis. Using the NCT (noticing, collecting, and thinking about things) method (Friese, 2014), data were analyzed and interpreted by moving back and forth between these three iterative steps. Interesting aspects observed in the data were collected and collated in the process of constant comparison (Butler-Kisber, 2018). Throughout the process, we identified patterns and links in the data. This approach to data analysis is illustrated in, among other things, the network views. The data analysis took place in two phases. First, there was descriptive-level open coding (Saldaña, 2013). Later we entered the next conceptual phase in the data-analysis process, and patterns and links were identified. The themes were subdivided into seven "problem" themes, five "solution" themes, and five "music experience" themes. This article focuses only on the "music experience" themes, namely the meaning participants ascribed to the Dalcroze-inspired workshop and does not elaborate on the water delivery problems and solutions that the stakeholders identified because of the Dalcroze-inspired workshop. The water delivery problems and suggested solutions expressed during the water meetings that followed the Dalcroze-inspired workshop, were included in a report to the Free State Provincial Premier. --- Activities in the Dalcroze-inspired workshop In a situation where conflict resolution is necessary, the appropriate choice of music and activities is crucial. The workshop aimed to encourage communication between community members by creating an opportunity for them to express their emotions through music and movement. Although the researchers made suggestions for music that they believed could inspire movement, the first author guided the choice of music and activities with reference to her knowledge of the community and its context. As this was mainly an intuitive and spiritual process for the music facilitator, she walked to the music in her living room to get a feel for the music and asked herself: "Will this music make things better?" The topics of the music were carefully chosen to facilitate reconciliation, such as Reconciliation Ballet by Rachel Portman, You and Your Crown by Matthew Mole, Baby can I Hold you by Tracy Chapman, Simple Gifts by Yo-Yo Ma and Alison Krauss, and others. Each activity was built sequentially from the previous activity, and each activity had a social intention, such as making eye contact, being aware of other people, leading and following, synchronizing the beat, making physical contact, celebrating together, giving recognition to the other person, communicating to whom you are going to pass the beat, being expressive and creative together, being sensitive to another person etc. For each activity, clear instructions were given, for example: "Walk with someone you have never met before. Change directions together only by being sensitive to the other person (no talking). " Another example of an instruction for an activity was: "Pair up with someone you do not know. Mirror that person's movement. Take turns to mirror and be mirroredtake turns to lead and follow. " These are just a few examples. Our approach relates to Higgins, 2012 third perspective of community music, namely an intentional intervention emphasizing people, participation, diversity and accessibility. We recognized "the value of music to foster intercultural acceptance and understanding" (Higgins, 2012, p. 5). Our choice of musicking was Dalcroze-inspired activities since we have succeeded with this approach in similar community contexts. We acknowledge that other community music approaches that require active engagement in interesting, playful, musical movement activities could have similar findings. In designing the workshop, the first author was also informed in her choices by the seven types of touch promoted by Greenhead and Van der Merwe et al. 10.3389/fpsyg.2023.1176691 Frontiers in Psychology 05 frontiersin.org Habron (2015). She agrees with their statement that "the touch-like nature of sound not only makes contact with the body, inciting physical and emotional movement but also develops awareness of self, others and environment due to the social nature of musical participation in general" (p. 93). They further state that touch activities are suitable to "communicate intentions and feelings to others and receive their responses" (p. 101). Therefore, five of the seven types of touch activities were used as well as one additional category, namely eye contact and imagined contact. Massage and therapeutic touch were not included since sensitive cultural and gender issues were at stake. Recorded music was used since there was no piano available, and the participants related better to more familiar music. The six types of touch/contact included were: 1. Eye contact and imagined contact, greeting with eye contact and throwing an imaginary ball to each other. 2. Direct physical contact with others by clapping each other's hands. 3. Self-touch: body percussion. 4. Touch and play easy percussion instruments: sound shapes, rattles, bamboo claves and rattles. 5. The touch and manipulation of materials: using balls, ropes, scarves, and other equipment. One group event involved using a large elastic band to connect participants. 6. To touch or be connected using an object such as a rope, scarf or elastic band. --- Findings The Dalcroze-inspired approach to the water workshop helped people get to know one another, think in a new way about an old problem, put conflict behind them, and, importantly, work on creative solutions. The findings in this article draw on an unpublished research report. In addition, the findings related to the Dalcroze experiences were expanded on, interpreted, and interrogated in the context of the relevant scholarly literature. --- Suffering It became clear from the people of Ngwathe's stories that they suffered tremendously (Figure 1). This suffering is caused by the health risks posed by dirty water. People who do not have money to buy treated water end up drinking the dirty water and become ill. Old and ill people do not even have water to drink with their medicine. In many cases, there is also no water supply, which leads to vulnerable people having to fetch water for themselves. The water problem jeopardizes children's education. They spend time fetching water when they are supposed to be learning. People also experience embarrassment and frustration with the unfairly and unevenly distributed water. Most participants stated simply and powerfully: "We need water. " --- Emergent themes With the use of the ATLAS.ti qualitative data analysis software, we identified the following five themes from the interviews, focus group interviews, photos, videos, and observations during and after the Dalcroze-inspired workshop (Figure 2): 1. Joyful experiences when participating in Dalcroze activities. 2. Dalcroze activities facilitate social interaction. 3. The Dalcroze approach transforms relationships. 4. Dalcroze-inspired activities foster virtues. 5. Music and movement support well-being. --- FIGURE 1 The suffering that the people of Ngwathe endure. The ATLAS.ti networks present the findings visually to illustrate the relationships between codes, categories, and themes. The first number after a code refers to the groundedness, the number of quotes associated with the category. The second number reflects the density, the number of links to other codes (Friese, 2014). Van der Merwe et al. 10.3389/fpsyg.2023.1176691 Frontiers in Psychology 06 frontiersin.org Theme 1: Joyful experiences and emerging categories. --- Theme 1: Joyful experiences when participating in Dalcroze activities Participants had a joyful experience participating in Dalcrozeinspired activities (Figure 3). They enjoyed it because they found the movement invigorating and exciting. They also enjoyed it because they found the music interesting and the movement activities entertaining. The joy they experienced was expressed as fun, happiness, and a good experience. One of the participants joyfully expressed how the Dalcrozeinspired activities broadened their outlook. The social component of the embodied approach may be the most important reason participants find it enjoyable, which brings us to our next theme, social interaction. --- Theme 2: Dalcroze activities facilitate social interaction When people are actively engaged, Dalcroze-inspired activities enable social interaction (Figure 4) because they enable communication. Participants moved in synchrony and could communicate better because of music' s expressive capabilities. One female participant expressed it beautifully: Yes, and then it leads us nicely into the session, and you know, I think it just oiled the whole meeting. Even the other person said it stopped us from pointing fingers. It helped us to relax and talk from the heart. Five emergent themes on the meaning participants ascribed to their experiences of the Dalcroze-inspired workshop. Van der Merwe et al. 10.3389/fpsyg.2023.1176691 Frontiers in Psychology 07 frontiersin.org Participants explored their roles in the group. They took turns leading and following. This made them realize that they can depend on each other in this workshop and the community when trying to solve the water crises. Their active engagement in the workshop was evidence of their commitment to addressing the water problems of Ngwathe. This social interaction helped relationships to transform. --- Theme 3: The Dalcroze approach transforms relationships One of the participants, a representative of the water forum, had instituted a lawsuit against members of the municipality. These members from the municipality were also present at the workshop. The highlight of the meeting was when this participant said: "Uhm, before I went in there, I had three enemies. We are now friends. It was fantastic!" This transformation process (Figure 5) was possible because the music "opens up the boundaries." Because this was such an interesting new concept for the participants, it opened their minds. Participants got to know each other more quickly. "I've never made friends so quickly; it is like quick you meet someone, then you greet them here, then you greet them at another corner, and your mind recognizes, and they also recognize you." Through the playful interaction, people connected. Music and movement facilitated social integration across ages and cultures, as one participant explained: … you could even see the different race groups … it was almost like …I do not know … There was no hierarchy, there was no color, there was also no gender. Everybody was trying, following their leader, doing whatever is being done. I was in awe. ... It really broke down those barriers. Not only does the process help with conflict resolution, but it also helps to build friendships. This transformation process brings out character strengths in people. --- Theme 4: Dalcroze-inspired activities foster virtues The Dalcroze-inspired activities brought out an uninhibited spontaneity and honesty in participants (Figure 6). "I'm happy. I'm myself. I'm willing to engage, and there is nothing for me to hide from you or anything of that sort. " People felt cared for: "I am very happy there are people concerned about the water problem. " The safe space that was created supported people's experience of well-being. The photo and video data showed that participants were helping each other during the Dalcroze-inspired activities. They worked together to create water wave movement improvisations. Furthermore, participants engaged in giving and taking activities. For example, they moved a large elastic band and handed it over to someone else without the elastic snapping. The beat was passed around; scarves were thrown to each other, and balls were rolled to each other. Participants also took turns leading a movement or following someone else's lead. They gave recognition to each other's movements in a mirror activity. Recurring quotes after the workshop included "We can depend on each other" and "We should help each other. " --- Theme 5: Music and movement support well-being Participants felt welcome at this workshop. Through music and movement, they could express their emotions and sense the music in their bodies. This promoted relaxation and was a source of Theme 2: Social interaction and emergent categories. Van der Merwe et al. 10.3389/fpsyg.2023.1176691 Frontiers in Psychology 08 frontiersin.org stress relief. "It was powerful. Music takes the mind far away from stress." The participants described it as a meaningful experience and a gift. The music helped them to be present in the moment (Figure 7). They were filled with awe and wonder and realized that the Dalcroze approach could help them all. "If we do this on a daily basis, it could help us all. It is better than the six o'clock news on TV." Theme 4: Virtues and emergent categories. --- Water narratives The closing activity of the workshop required participants to divide into groups to create a movement narrative about their experiences of the water situation in Parys. They were asked to show in movement how they experienced the water situation in Ngwathe. The participants imitated water sounds with percussion instruments, body percussion, and their voices for these improvisations. Some small groups used dramatic storytelling with spoken word, sound effects, and movement to express their experiences. These narratives were devised spontaneously and highlighted the improvisatory nature of the Dalcroze approach. The groups shared the following messages: • Group 1: How the water purification process at the water plant works and communicated their intention to bring "water to the people. " • Group 2: The water pressure and quality decrease in the lower-lying areas, and although the municipality provides the water, it does not reach the people, especially not the people in the rural areas. • Group three 3: The water comes from rain and boreholes, and we need to be proper stewards of the groundwater and surface water. • Group 4: The impact of leaking pipes. • Group 5: How the water in the river flows, the beauty of the river and their gratitude for the river. • Group 6: There is no clear water, and the available water gives them stomach cramps and diarrhea. They pray for water and praise God when it rains. • Group 7: Tells a story of rain, full reservoirs and an operator that pumps the water to the people, but then the water dries up, and the people are angry at the operator, and they are sad. --- Discussion We now relate the five themes to the relevant scholarly literature and Jaques-Dalcroze's own writings. Theme 1: Joyful experiences Elliott (1995) identifies enjoyment as one of the three essential values of music-making as a human pursuit, while Freeman (2002) found heightened enjoyment to be one of the four ways in which students engage in music when a spiritual approach to music education is followed. It is, therefore, a valuable finding of this study that the participants enjoyed the Dalcroze-inspired workshop. This was also a finding in a previous study that the stakeholders of the Brandfort community enjoyed the Dalcroze-inspired workshop experience (Van der Merwe et al., 2019). Jaques-Dalcroze (1912, p. 31) himself said, "I like joy, for it is life. I preach joy, for it alone gives the power of creating useful and lasting work. " Joy is also important because it opens us up for social interaction (Johnson, 2020). Theme 2: Social integration McGuire (2003, p. 15) states, "Collective embodied practices, such as singing or dancing together, can produce an experiential sense of community and connectedness. " In the Brandfort study (Van der Merwe et al., 2019), the researchers found that the Dalcroze-inspired workshop facilitated interaction, cooperation, and connection between people. The current study takes it one step further. Not only did participants interact, but they also experienced synchrony and improved communication as a result. Furthermore, they learnt that they could depend on each other. Ansdell (2014, p. 71) explains that "Musicking allows us to explore, affirm and celebrate our diverse real and symbolic human relationships" and, according to Small (1999, p. 13), "It is in those relationships that the meaning of the act of musicking lies. " Jaques-Dalcroze (1919, p. xii) knew that his approach could help people to express emotions regarding a communal crisis. In 1919, he said, "Now the War is over, the coming generation will experience this need of forming groups for the expression of common emotion. " Theme 5: Well-being and emergent categories. The four lifeworld existential of Van Manen (1997, p. 39) form the categories of the well-being theme: lived body (corporeality), lived time (temporality), lived human relation (relationality), and lived space (spatiality). These categories also relate to Van der Merwe and Habron's (2015) conceptual model of spirituality in music education. Van der Merwe et al. 10.3389/fpsyg.2023.1176691 Frontiers in Psychology 10 frontiersin.org Theme 3: Transforms relationships Not only can Dalcroze-inspired activities facilitate social integration, but they can also enable the transformation of relationships. Boyce-Tillman (2000, p. 93) states that "Words divide, but sounds unite" and that "When a group of people makes music together, unity is restored." The Brandfort study (Van der Merwe et al., 2019) revealed that the participants reached a phase of heightened awareness of each other by feeling part of the group. We argue that in the current study, this awareness facilitated the transformation of relationships by opening up boundaries between people. Jaques-Dalcroze (1930a, p. v) says: "I am certain of one thing: that the rightly-directed will can convert mean and selfish instincts into generous and altruistic ones, negative resolves into positive." Theme 4: Virtues expressed Jaques-Dalcroze (1930b, p. 93) considers art "the outward projection of love and knowledge of beauty and truth. " For him, "receive and give" is the "golden rule of humanity" (1919, p. 63). In the Brandfort study (Van der Merwe et al., 2019), the participants felt positive about being open to each other's needs and feelings. In the Parys study, openness led to people helping each other. Boyce-Tillman (2007, p. 1418) explains that in a globalizing culture, musical experiences might help us connect to the Other "in ways that are characterized by a combination of respect and empathy. " Virtuous behavior supports our well-being. Theme 5: Support well-being Croom (2015, p. 44) supports the claim that "music practice and participation can positively contribute to one living a flourishing life by positively influencing their emotions, engagement, relationships, meaning, and accomplishment." The Brandfort study (Van der Merwe et al., 2019) showed that the Dalcroze-inspired workshop positively contributes to participants being able to express their emotions regarding the water crisis, active engagement, and connection with each other. In the Parys study, more explanations were found why Dalcroze-inspired activities supported participants' well-being: they felt welcome, relaxed, present, and could escape reality. These aspects contribute to participants' overall well-being. Jaques-Dalcroze (1930c) states that "it cannot be denied that rhythmic movements possess a calming influence upon the nervous system" (p. 159). --- Conclusion Moving from conflict to open communication and problemsolving is challenging for communities in crises. MacLaren (2009) believes it is more effective to overcome emotional tensions when a conflicting situation is approached positively and meaningfully. She emphasizes that shared bodily experiences are useful for making sense of a mutually conflicting experience, encouraging positive individual transformation. Similarly, the Brandfort study showed that embodied experiences promoted social interactions and joyful emotions during a communal crisis. The positive findings of the Brandfort study (Van der Merwe et al., 2019) motivated this study's research undertaking and purpose. Conceptual replication is relevant in qualitative research as its interpretive strengths can lead to numerous discourses on the same phenomenon (Tuval-Mashiach, 2021;Makel et al., 2022). Although the same qualitative approaches were used in both studies, they were applied in different contexts, which supports transferability, adding trustworthiness, dependability, and validity to the research findings (TalkadSukumar and Metoyer, 2019). We developed a distinctive and cumulative body of knowledge, increasing understanding and moving toward a theoretical understanding (see Figure 2) of the phenomenon. The unique contribution of this study is that the Dalcroze workshop was designed for a community in crisis to facilitate conflict resolution. This article is the first study to show that Dalcroze-inspired activities can facilitate conflict resolution. The Dalcroze-inspired activities encouraged embodied expression and creativity, enabling the participants to develop a new understanding of their association with conflict. The participants recognized the negative effects of conflict situations and identified the need for conflict resolution peacefully to transform relationships. This study highlighted that joyful, communal, and embodied musical experiences can open participants' minds to connect, communicate, and creatively solve problems. This joy was affiliated joy (Gabriel et al., 2020); in other words, "joy that was shared with others" (Johnson, 2020, p. 7). The level of arousal during the Dalcroze-inspired workshops was high (Van Cappellen, 2020), generating a lot of energy and urging participants to move. Joy motivates us to reach out to others (Van Cappellen, 2020), as the participants repeatedly mentioned: "We should help each other." Joy sparks an interest in fellow human beings and makes us socially responsive (Izard, 2013). The joyful experience from the communal movement activities was the catalyst for their meaningful experiences. Meaning is associated with "being a giver" (Dwyer et al., 2017, p. 200), helper, andcontributor (Baumeister et al., 2013). Li et al. (2019) explain that meaning leads to "self-transcendent outcomes" (p. 408) when serving something greater than oneself. During this Dalcrozeinspired workshop, participants became aware that they were serving something larger than themselves, namely the community. Meaningful experiences are often associated with a struggle (Dwyer et al., 2017), effort, and worrying (Baumeister et al., 2013) because of a concern for others (Vohs et al., 2019) or an issue, for example, a struggle against injustice (Metz, 2009). Ngwathe stakeholders could share and express their struggle through the Dalcroze-inspired workshop, voice injustices and their needs, and explore possible collaborative solutions. Furthermore, a sense of belonging (Martela and Steger, 2016) and taking care of others (Metz, 2009) enabled the community members to experience the workshop as meaningful. Negative experiences and suffering can lead to transformation and even meaning when the individual can make sense of difficult events (Vohs et al., 2019). Moving together with others and creating water narratives helped participants understand their water crises' complexities. The Dalcroze-inspired community engagement presented in this article might be transferable to other contexts. In this hermeneutic phenomenological inquiry, the Dalcroze approach was used for a community in crisis to facilitate conflict resolution and transform relationships. --- Data availability statement The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation. --- Ethics statement Ethical review and approval was not required for the study involving human participants in accordance with the local legislation and institutional requirements. The participants provided their written informed consent to participate in this study. --- Author contributions LV facilitated the Dalcroze-inspired workshop, collected and analyzed data, and wrote a large part of the article. DJ wrote the section on Music, health and well-being, and did extensive editing. JT was the leader of the transdisciplinary research team that facilitated the meeting about water, actively collected data in the field and wrote the section on the water, and gave feedback to the various stakeholders. All authors contributed to the article and approved the submitted version. --- Conflict of interest The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. --- Publisher's note All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

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Qatari intersections with global genetics research and discourse

Genetic discourses have taken a predominant role in approaches to combating a number of conditions that affect Qataris. This paper is derived from an exploration of Qatari encounters with globalizing discourses of genetics, particularly as they relate to notions of risk. It explores Qataris negotiations of global interactions and influences, including the discourses around genetic risk and cousin marriage. It suggests that family marriage can be seen as one of the main platforms of resistance and a means for modern, cosmopolitan and tradition to be negotiated.

Introduction Like other populations in the Middle East, Qataris have increased susceptibility to some diseases, including: diabetes, cardiovascular disease, obesity, and some neurological disorders. Genetic discourses have predominated in Qatari approaches to combating these conditions. Discussions around genetics also prevail because of the high frequency of consanguineous marriages in the country and concerns about its genetic effects. Rates of genetic disorders and birth defects are relatively high given the small population size. Autosomal recessive disorders are increased due to consanguinity, but also common, multifactorial disorders such as diabetes mellitus type 2, obesity, psychosis, and congenital malformations are seen in excess (Bener and Alali 2006;Bener et al., 2007). There are particular concerns about high rates of sickle-cell aneamia; thalassemia; homosystinuria; and mental retardation. Qatar provides an opportunity to explore issues around discourses of genetic risk where despite the global spread of biomedicine, a culture of transnational research, and a commitment to modernization we witness a continuing dedication to the practice of consanguineous marriage. The paper investigates the way medical technologies and research; particularly those that focus on genetics are the focus of the Qatari state's positioning as a global political and economic presence. The research on which this paper is based contributes to the literature on modernity and globalization by focusing on the Qatari context where rapid social change and globalizing forces have been met by negotiations and, in particular, containment at the individual, group and state level. The paper thus contributes to the literature on the impacts of discourses of genetic risk in consanguineous marriage in diverse global settings (Shaw and Raz 2015). This paper is derived from an exploration of Qatari encounters with globalizing discourses of genetics, particularly as they relate to notions of risk. I draw on my experience of living in and conducting research in Qatar (2010Qatar ( -2016)). During this period I conducted two research projects: one an investigation into miscarriage and the other a general investigation into public understandings of genetics and notions of risk, disability and illness. During the course of my research interlocutors commented on issues around inheritance, genetics, risk, illness and health. In addition, the paper is based on analysis of Qatari medical research and government documents. I situate this paper's findings amongst social science research focusing on how new medical technologies and knowledge, including those involving genetics, are accommodated, contained and resisted within local moral landscapes (Inhorn 2009). The analysis and interpretation of research findings is informed by current anthropological knowledge and analytical approaches to the topic of genetics in the Middle East region. A variety of scholars (i.e. Panter-Brick 1991, Raz 2005, Beaudevin 2013, Parkhurst 2014) explore genetics in the Middle East. Raz (2005) explores what happens when this "newly discovered scientific notion of 'fate' encounters its traditional and religious conception" (xv) amongst the Negev Bedouin community in Israel. Beaudevin's (2013) research on inherited blood disorders in Oman reveals, "the way increased biomedical knowledge and the outcomes of its applications can affect a society" (p.185). Panter-Brick's (1991) research in Saudi Arabia shows the profound impact that knowledge of genetics has on family relationships. Scholarly works such as these have shed light on the way encounters with genetics alter social life and understandings in fundamental ways. The paper explores Qatari negotiations of biomedical genetic knowledge, particularly in light of marriage practices and ideas about reproduction. The paper first presents material on the medical and research platform in Qatar, particularly the central role genomics and genetic medicine hold within the development agenda. In particular, I argue that a focus on genetic discourses and genetic research underpins the Qatari quest for modernity. The paper explores the way in which genetic medicine and research is at the forefront of the Qatari state's mission as a "modern" nation and a world leader in research, education and international politics. This impetus can be at odds, however, with the way that Qataris themselves understand and incorporate genetic knowledge into their lives. Thus, the second part of the paper considers local Qatari knowledge systems and explores the tensions and negotiations in their intersections with modernizing genetic discourses. I show that Qataris meet such discourses with processes of containment, in a balancing of the traditional and the modern. With regard to the dominant discourse around genetic risk and cousin marriage, the increase in family marriage can be seen as one of the main platforms of resistance and negotiation. --- Methods This paper is based on several years of research on/ in Qatar including two ethnographic research projects. The paper primarily draws on fieldwork conducted over 12 months (2012)(2013) during which accounts were collected about notions of health risk and, particularly, genetic risk (for a full description of methods see XXX 2015). Interviews were conducted with 45 families whose children were pupils at a school for special needs. Because of the presence of the medical genetics centre at the same facility, families of students were at the interface of public understandings of genetics. Families had been exposed to genetics through general discussions by staff or more directly exposed through genetic testing. Interviews included collecting basic demographic information about the family, marriage patterns, education and occupation. General questions about notions of health, illness and risk were asked. Questions probed notions of inheritance and genetics, i.e. 'who provides the genetic material to a child' as well as questions to explore how traits (i.e. intelligence, physical traits, and so on) were passed down through generations. Qualitative, flexible, and open-ended methods were used to focus on the perceptions, experiences and views of interlocutors. Professionals involved in the creation of genetic knowledge and those at the interface between the public and genetic discourse were interviewed including: social workers, geneticists, and those involved in medical screening programmes. Additional information about public understandings of genetics is provided by ongoing exploration of documents, including media and government policy documents as well as data derived from 18 months (2013)(2014)(2015) ethnographic research on pregnancy and miscarriage (for description of methods see XX in press). The latter involved interviews with 60 women and 55 secondary participants (family members, health care providers, religious leaders etc), whose discussions about conception and inheritance inform this paper. Analysis of the qualitative data sets generated by the research was through a process of thematic coding and analysis that make use of a grounded theory approach (Strauss and Corbin 1990). Regular reading and re-reading of interviews and field observations identified themes for exploration in subsequent interviews. Analysis for this paper involved identifying themes related to the topics of risk, genetic risk, illness causality and inheritance. As themes emerged, data were re-analysed to develop and refine the findings. Several over-arching themes were identified, providing a framework through which I present and contextualize the findings. --- Qatar: modernity Visitors to Doha often express surprise at its state of the art appearance; its skyline dominated by high-rise modern buildings raised from the ground at an astonishing rate. The city is continuously changing, growing, and evolving: one is overwhelmed by sounds of around the clock construction work and left confused by suddenly altered roads. Photographs of 1980s Doha show a desert with a few low buildings: surrounded by desert sand, the pyramidic Sheraton Hotel stands out as the only building taller than a few stories. Today, the hotel is dwarfed by the modern steel and glass skyscrapers, which surround it. The city itself is a symbol of Qatar's rapid social and economic development, representing the county's ability to change itself and its surrounding environment at a rapid rate fuelled by its high-income economy. Qatar is characterized by the striking modernity of its urban built space and its pace of social change. A small country occupying the Qatar Peninsula on the northeastern coast of the Arabian Peninsula, Qatar's recent social and economic changes have occurred as the result of the discovery of natural gas and oil in 1940. This discovery turned Qatar from a largely Bedouin society that depended on fishing and pearl fishing to the richest country in the world. In 2013 its population was 1.8 million people, with Qatari citizens representing a minority at only 278 000 people. The rest of the population is comprised of migrant workers from all over the world. A British protectorate in the early 20 th century, the country gained independence in 1971. An absolute monarchy headed by Emir Sheikh Tamim bin Hamad Al Thani, it is a conservative country with most Qataris adhering to strict Salafi interpretation of Islam. Sharia law is the main source of legislation in the country. Despite its conservatism, the country has endeavoured to be an influential link between the Arab world and the west and has worked to develop a reputation as a progressive Arab nation in terms of education, research, as well as economically and politically. The home of Al Jazeera Media Network, Qatar positions itself as an influential player in the Arab world and supported several rebel groups during the Arab spring. The country has had a high profile of late due to these issues, its investment in a number of high profile holdings (i.e. in the UK: Harrods, The Shard) but also because it is to host the Fifa 2022 World Cup and has been embroiled in the accusations of corruption that has accompanied its bid. Further damaging Qatar's reputation has been criticism of its treatment of migrant workers, which has gained a great deal of media attention in recent years. Qatar is positioning itself as a world leader in research and medical technology: "In striving toward this vision, Qatar will distinguish itself within the region and world as a cosmopolitan nation that embraces scholarly excellence, innovation, creativity, inclusiveness and merit."(http://www.qnrf.org/en-us/About-Us/Vision-Mission). But what does cosmopolitan mean in this context? The Oxford dictionary suggests a number of meanings: familiar and at ease with many different cultures, including people from many different cultures, exciting and glamorous character associated with a mix of cultures. One can look to a number of recent initiatives to better understand what cosmopolitanism means in this context, such as "Education City," a 14 square kilometer area in Doha, which houses branch campuses from a number of leading American and one (UCL) British university. An initiative of the Qatar Foundation (QF), it is conceived as a forum for exchange, where universities collaborate with businesses and institutions in both the public and private sector. It is seen as a cosmopolitan space, where Qataris, other Gulf Arabs, and students from other nations mix and are taught by foreign (predominantly American and European) professionals. The aim of Qatar's focus on creating world class education for Qataris at Education City predominantly is built upon a notion of education as a "means of creating marketable, international skill; education is focused on connecting Qatar to the outside world" (Fromherz 2012:10). Education City stands at the intersection of two sets of interests: being at one with the globalised world while aspiring to stand apart from it, as Kane (2013) describes in her research into medical education. The Qatari leadership did not recruit from the pool of established regional medical schools, but deliberately chose to import one from the U.S, notes Kane (2013). Although a regional medical college would "offer a professional training more in keeping with core Qatari values and culture, the US programme was perceived to be superior both in terms of its quality of training and its capacity to develop a domestic research platform which could communicate at an international level" (Kane 2013: 101). Diverging from the aims of other pursuants of globalised and globalising education, the Qatari state is: Not aiming to produce neoliberal subjects trained for employment in global knowledge-driven economies. Rather, citizens are being presented with opportunities to equip themselves with specific skills in order to participate in the development of a domestic knowledge-based economy (Kane 2013:101). To this end, a number of measures are activated to ensure the maintenance of Qatari values and to nourish a local set of principles of development. Concerned about their dependence on foreign labour and outside expertise, the Qatari state has introduced a number of governmental initiatives devised to increase the number of Qatari citizens employed in public and private sectors. These initiatives are part of the so-called "Qatarisation" of the nation, a focus of the Qatar National Vision (QNV) 2030. This development plan was launched in 2008 by His Highness Sheikh Hamad bin Khalifa Al Thani to provide a "clear roadmap of Qatar's future" and to "transform Qatar into an advanced society capable of achieving sustainable development" (http://www.gsdp.gov.qa/portal/page/portal/gsdp_en/qatar_national_vision). The structure of Education City is indicative of the general dependence on the outside, which can be seen throughout Qatar economic, social and political arenas: 90 per cent of Qatar's food comes from overseas. This dependence has become a preoccupation of Qatar's political elite (Fromherz 2012:11). Thus, the model is bringing from the outside to create Qatari citizens and improve Qatar, but such imports are contained and controlled. As Douglas (1966) has suggested, when boundaries between categories are unclear, contradictory or broken down, the resulting category confusion is seen as polluting and potentially dangerous, requiring containment strategies. Containment is seen throughout Qatari policy and approaches to outside forces, which focuses on limiting such forces seen polluting or corrupting Islamic and Qatari values: such as the tight restriction on the sale and use of alcohol; restrictions on the behavior and movements of certain migrant workers and, of course, the policy of Qatarisation itself. The state restricts the ideological influence of others. Commentators have suggested that the focus of education in Qatar is on connecting with the outside world rather than inward criticism or reform it is, "not on the issues of governance and society within Qatar itself" (Fromherz 2012:10). The main instrument of containment is through constant emphasis on tradition. Qatar positions itself as innovative, modern and open to learning from other cultures. However, the emphasis is on retaining Qatari customs and authenticity as well and benefitting Qataris specifically. Gulf regimes, such as Qatar, actively seek to create, "invented traditions" in order to maintain and deepen their legitimacy and relevance, with such "heritage engineering" represented by the emphasis on cultural activities such as folkloric customs, national dress, as well as the passion for museums and a renewed attention to suqs, as in Doha's reconstructed and reimagined Suq Waqif (Cooke 2014). In this context the Qatari notion of cosmopolitan seems to mean welcoming in, making use of, and learning from outside influences, but only whilst retaining a strong sense of continuing Qatari identity and culture. --- Qatari Medical Research landscape Qatar has pledged to spend 2.8% of its GDP on research (of 211.82 USD billion estimated) with the majority of these funds being managed by the QF, which establishes the country's research strategy, heavily influencing where funding is channeled. The Vision of QF is to enhance the education of its citizens and training of its workforce and fostering improvements in health, wellbeing, environment of "its own people and those of the region". The QF launched Qatar National Research Fund (QNRF) in 2006 as part of its ongoing commitment to establish a knowledge-based economy. Applications must emphasise how the research will directly benefit Qatar, this being key criterion for evaluation. In 2012 Qatar presented its first National Research Strategy (QNRS), whose mission is: "to build and maintain a competitive and diversified economy; improve the health and social wellbeing of Qatar's population; and support Qatar's distinctive culture and the security of its people" (http://www.qnrf.org/en-us/About-Us/QNRS). Included in the QNRS is the development of "plans to tackle Cancer, Diabetes & develop personalised medicine" and to develop a "dedicated research program focused on the understanding of the genetic causes of diseases and conditions in Qatar." Indeed, considerable state funds have been channeled towards understanding the country's high rates of diabetes, cardiovascular disease, obesity, as well as certain neurological and genetic disorders. In light of increasingly high rates of diabetes, heart disease and obesity, popular health discourse in the region has emphasised the emergent Arab genome as the primary etiological basis of major health conditions (see Parkhurst 2014, this issue). Local health authorities focus on programmes looking at genetic susceptibility for certain health concerns. In recent years, the Qatari government has implemented dozens of public awareness campaigns intended to educate Qataris about healthy eating, exercise, and fitness. It has been reported that "more delicate cultural issues", such as family marriage "are being addressed by 'higher-ups in society." Community leader and sheikhs are engaged by public health drives to communicate such messages around risk (http://www.theatlantic.com/health/archive/2011/11/the-richest-fattest-nation-on-earth-itsnot-the-united-states/248366/). Research, including the mapping of the genome, has been undertaken in order to understand Qatari genetic difference and its impact on health. The basic goal of the QNRF-funded Weill Cornell Medicine-Qatar (WCM-Q) research, as outlined by the lead, Dr. Crystal: "involves trying to understand the structure of the genome of the Qataris and put that in context with the environment to see how we can use that information to help the population in terms of general health, understanding disease, developing appropriate therapies" (QNRF 2015). Such research exemplifies the next phase of genetic research and involves localized research to discover patterns in heritage and genetic susceptibilities to disease. In Qatar this has focused on the local Qatari population in order to map ancestral background and isolate areas of the Qatari genome that could potentially allow prediction and intervention. Rodriguez-Flores et al 2014 outlined three categories of the Qatari local population: Q1 Bedouins, Q2 Persian or South Asian mixture and Q3 African-derived Qataris. This research team plans to build upon this knowledge to study the responses of the different genetic populations to the same environmental stressors. As more studies into the local population take shape, researchers will also be able to isolate more monogenetic diseases prevalent in Qatar, such as thalassemia. Such research aims to understand the differences between the Qatari populations and other populations in order to learn why Qataris are more susceptible to certain disorders. A number of projects have been developed to further Qatar's vision. In 2013 The Qatar Genome project was launched in order to identify diseases and illness "in order to have personalised treatment and medications for such diseases", according to HMC Managing Director Hanan al-Kuwari (Gulf Times 2013). The SIDRA Medical and Research Centre is to be an "ultramodern, all-digital academic medical center which will set new standards in patient care for women and children in Qatar, the Gulf region and internationally" (http://www.sidra.org) and "help Qatar grow as a hub for genetic medicine": [It] will house a first-of-its-kind facility, the High-Throughput Genomics Center, to undertake population studies and genetic sequencing for the MENA region. The facility will provide Qatar and the region access to the latest technology to help advance genetic mapping projects. The facility's early phase of development is the creation of the Arab consensus genome, which will allow for a deeper understanding of genetic variants that contribute to the health of the Arab population…. The initial focus of the facility will cater primarily to high-end applications, including human whole genome sequencing for rare genetic diseases and population studies…. Genome sequencing and population studies are an exciting new field of research, enabling scientists to create truly personalized care based on an individual's own genetic makeup. WCM-Q is conducting research involving the sequencing of 1,000 Qataris representing "0.3 percent of the whole Qatari population" (QNRF 2013). However, this does not include the entirety of the population, but only Qatari nationals. This is particularly exclusive given the way that nationality is conferred: through the male Qatari line. Hence, offspring of Qatari women are not considered nationals if their father is non-Qatari. The genomic revolution has furnished potent resources for the expression of nationhood (Atkins and Glasner 2007). The research projects outlined above resonate with the nation's overall research strategy, which is tied in to the Qatar National Vision (QNV) 2030, which "is based on the guiding principles of Qatar's Permanent Constitution. It is the primary catalyst driving change and growth across Qatar [and] reflects the aspirations of the Qatari people and the resolve of its leadership" (General Secretariat For Development Planning 2008). One must remember that Qataris make up 12% of the country's population and the rest are migrant workers, many of whom have different experiences of health and access to services and opportunities as outlined by such mandates. Such research raises questions about who benefits from investment in genomics. Are migrant workers, for example, able to access genetic interventions? Are they potential research participants in genetic research? Gardner et al (2013) found that 7% of the foreign workers reported that they did not have a QID (residence permit). However, what is particularly relevant for the discussion here is that a much larger percentage (56%) of the workers lacked a government-mandated "health card" (Gardner et al 2013). This document is required for accessing health care in the state's expansive public health system. Thus, over half of the foreign residents are unable to access basic state funded health care, let alone genetic interventions. Genetics provides a powerful idiom for the expression of individual and collective identity. QNRF has funded genome-sequencing projects and is independently pursuing the whole genome sequencing of 300,000 Qatari nationals, representing almost the entire Qatari population (Al Mulla 2014; http://www.gulf-times.com/qatar/178/details/374345/qatarlaunches-genome-project). The nation appears in discussions around genomic patrimony and sovereignity (Rabinow 1999;Benjamin 2009). Genomic researchers and proponents of genome projects in Mexico and India 'strategically calibrate' contrasting modes of groupmaking (Benjamin 2009). The Qatari project resonates with Rabinow's (1999) interpretation of the reality of "French DNA" through his account of the undoing of the commercial exchange of DNA from French families to a US biotech company. The French government considered DNA samples to be part of the collective patrimony and therefore not appropriate as items of commerce: Rabinow, thus, contrasts this with the US system where body parts (i.e blood) can be sold. An individual's body and body parts are seen as part of the French patrimony. The economics of biovalue mean that DNA may be regarded as a national resource, as well as a repository of national characteristics (Atkinson & Glasner 2007). The rhetoric of biological inheritance and relatedness is not new and has long provided a vocab of nationality, nobility and purity (Atkison & Glasner 2007). The intersection of national and biological identity has been documented in many contexts and is particularly true of Qatar. Saudi Arabia has initiated the sequencing of about 100,000 Arabs from around the Kingdom (http://rc.kfshrc.edu.sa/sgp/). The ambitious remit of these programmes resonates with the calls to widen programmes of genetic research to global health care arenas outside Western Europe and North America and to include genotype information from 'minority populations' and 'other ethnic groups' (see Bustamante et al 2011). The need to include genotype information from broader and more diverse groups is desired mainly so that those most in need will be included in research and subsequent interventions. However, in Qatar the aim is to provide specific information related to Qatari bodies and diseases and, thus, seems less about underserved populations and more about national relevance. Concern has been raised that data generated from such genome projects will be unconnected because of its politically driven nature. As Kuwaiti based geneticist Al-Mulla suggests, genome sequencing "is viewed only as a national endeavor rather than a humanitarian triumph or necessity" and argues "locking genomes… contradicts the goal of genomic research, namely that the benefits be shared globally" (2014:133). It is likely that such research will produce findings that will help other populations, but this may be a side effect rather than the central aim. For example, Crystal, the lead of the WCM-Q genetic mapping project noted that the mapping and analysis of Qatari genomes has provided unexpected insight into a genetic variation that affects other populations all over the world. One study focuses on a variation gene "ApoE", which makes carriers susceptible to having increased levels of unhealthy fats called triglycerides in their blood. Considered rare, the variant was far more common in those with sub-Saharan African extraction; its presence is associated with disorders such as heart disease, type-2 diabetes and stroke (Abou Ziki et al 2014). The research included 1266 New York African-Americans and found that four per cent carried the R145C variant and, thus, Crystal points out, has implications for African derived populations throughout the world: "it was extremely gratifying for us to make a discovery in Qatar that provided insight into the health of people in New York" (QNRF 2015). Whilst the Qatari government has emphasised genetics research and medicine as keys to creating a healthier society, the particularities of the Qatari context have attracted global genetic research initiatives. The generous funding programmes, emphasis on research and development, and possibilities for international collaborations have enabled an impressive research landscape. The genetic singularity of the Qatari population, high rates of consanguinity and the high prevalence of certain conditions both highlights the need and offers the opportunity to study the genetics of recessive single-gene disorders (Marincola & Sheikh 2012). Research into the relationship between consanguinity and the severity of multi-genic complex diseases of adulthood could also be investigated in Qataris better than in most populations worldwide: for example, research into the high prevalence of type II diabetes in Qataris and the connections between socio-economical factors, endogamy and/ or consanguinity could be disentangled (Marincola & Sheikh 2012). Indeed, genetics studies related to diabetes and obesity are currently being conducted at WCM-Q as well as QBRI. --- Genetics and genomics: public understandings and negotiations Genetic discourses have a high profile in Qatar through local media reports, public health initiatives and the research landscape. Seen as the key to improving the health of Qataris they are part of a state political drive to be seen as a harbinger of cutting edge research and knowledge: to be a modern and "cosmopolitan" country. I now explore how this vision of Qatar, particularly with its harnessing of global discourses on genetics, is experienced and interpreted by Qataris themselves. In particular, I explore the discrepancy between scientific implications and lay interpretations of inheritance. Central to this is a process of negotiation and containment in order to re-establish the balance between tradition and modernism that is at the heart of contemporary Qatari social life. Thus, the role of genetics as part of the Qatari state's mission to become "modern" can be at odds with the way that Qataris themselves understand and incorporate genetic knowledge into their lives. Despite years of public dissemination of genomic knowledge in the region, its commonality and widespread acceptance; the rates of diabetes, obesity and heart disease continue to rise. Many have commented about the sudden, severe problems of obesity and diabetes among wealthy citizens in the Gulf over the past decades. The link is made between these condition and modernity: these are medical conditions that were almost completely non-existent before the oil boom: These observers seem to feel that the diabetes, an inability of the body to absorb glucose because of lack of insulin, is analogous to a deeper intellectual and philosophical problem existing in the social fabric of Qatar: the inability to digest and process the meaning and possible negative consequences of modern change (Fromhertz 2012). The suggestion is the high rates of diabetes and obesity are related to an inability to digest change. Gulf Arabs themselves often see these as conditions of modernity and many do not appear willing to consider personal habits as responsible for their wellbeing (Parkhurst 2014;this issue). Lay observations about the rise of such "new" diseases resonate with theoretical observations of risk as an aspect of modernity (Beck 1992, Giddens 1991, Caplan 2000) and with lay observations by, for example, British Pakistanis that risk is greater in modern societies (Shaw and Hurst 2008). Parkhurst observes that Gulf Arabs often cite the presupposed Arab predispositions to Type 2 diabetes as the ultimate issue in discussions of treatment and lifestyle choices: These habits are a form of personal violence embedded in many Emirati lifestyles. This type of violence is internal, and genes, as a category of fate are inducted into indigenous cosmology, are perfect foreign agents. They are embedded in the body, but not part of familial kinship… They are perhaps perceived as sacred when they are categories of fate, or agents of Allah, and they are mundane as agents of disease. They might cause disease, but they are also thought to be at the heart of being Arab (2014:193). Qatar has reacted to modernization uniquely: the "'heroic' in Qatar is associated not with the 'now', a now dominated and built by migrant labour, but with what is 'behind it'-a past reconstructed and reconstituted into nationalized historical moments" (Fromhertz 2012:15). The government has perpetuated neo-traditional myths of culture and authenticity: Qataris have instead maintained tradition or at the very least, constructed newtraditional notions of identity. Shielded from the most ravishing consequences of modernization by enormous wealth and by a dependence on a massive expatriate community, Qataris can maintain a bubble of culture and internalized authenticity. It is no mere fashion that leads all Qatari men to wear their traditional thob at all times in Qatar, moving through Western spaces and even influences while maintaining lineage and family as the primary determinant of destiny (2012:13). --- Consanguinity: containment and tradition Despite the high profile of genetic discourses and particularly public health messages about the risks of family marriage, consanguinity is on the increase in Qatar. The global spread of biomedicine has brought with it a globalizing discourse of risk accompanying the practice. Attitudes of Western cultures and medical professionals toward consanguinity are often negative, ostensibly because of the impact on health (see Shiloh et al. 1995;Bittles and Makov 1988). As Shiloh et al (1995) suggests such notions have "penetrated even in societies where this kind of marriage is common, and have been integrated into more general attitudes and beliefs about consanguinity" (p1301). Such is the case in Qatar where despite being a dominant marriage pattern, the negative discourse of risk has been integrated into public discourse, linked, in part, to the country's continuing emphasis on modernization. As Bittles (2012:1) outlines, 'it has become virtually impossible to persuade members of the general public that inbreeding, and by extension marriage between biological relatives, can be anything other than harmful.' This is despite the fact that there is growing evidence that the deleterious effects of consanguinity are exaggerated (i.e. see Shiloh 1995). Shaw (2009 49) states: Public perceptions of risk are not neutral: a 'climate of disapproval grounds the belief that certain deeds are dangerous' (Douglas 1992:27). Moreover, in the current political climate of Muslim/non-Muslim relations in contemporary Europe, the biological risk of cousin marriage provides 'scientific' grounds for disapproval of a marriage practice… for persisting in risky behavior, resisting cultural conformity. By actively drawing in these discourses, there is in Qatar a focus on the dangers of consanguineous marriage that is communicated through public health drives. Mandatory premarital screening programme for all couples intending to marry are one of the main ways that Qatari citizens confront genetics. Across the Middle Eastern region, the rates of consanguinity range in most societies from 20% to 55% of all marital unions (Bittles et al 1991;Bittles 2012). However, unlike in many parts of the world (Lebanon, Saudi Arabia, Kuwait, Jordan, Israeli Arab communities and the Palestinian territories) the practice is on the increase, as it also is in the United Arab Emirates (UAE), Yemen, Iran (Bittles 2011:62). The increasing rates of consanguinity contradict the assumption that modernization will "inevitably reduce the incidence of consanguinity" (Jurdi&Saxena 2003:2; in Qatar see Harkness 2014; Al-Ghanim 2010)). A recent study found that 54% of Qatari marriages are consanguineous with first cousin unions being the most common: 34.8 % of all marriages and 64.4 % of all consanguineous unions (Bener & Hussain 2006). Consanguineous marriage is common not only in the Middle East, but also in South Asia, North Africa and parts of Southern Europe. Shaw (2009), found a similar increasing trend amongst British Pakistanis over the past decade, contrary to expectations. Rozario's (2013) study of British Bangladeshi Muslims found that, despite negative views of cousin marriage amongst health care professionals, respondents saw the practice as a way to retain a "purity of blood". The "assumption that the decision remains in Allah's hands makes it possible for people to go ahead with cousin marriages despite being perhaps at some level aware of the risks" (Rozario 2013:201). Research from a variety of cultural contexts has revealed that lay and public health/media discourses about genetic risk and cousin marriage do not always correspond (Shaw 2009). Genetic risk was seen as irrelevant and thus, a "differently constituted perception of risk" was present (Shaw 2009:3). Scholars have shown that encounters with genetics alter social life and understandings in fundamental ways in the Middle East (i.e. Panter-Brick 1991, Raz 2005, Beaudevin 2013). Parkhurst (2014) shows the robustness of UAE native knowledge system: "Local systems of cosmology, kinship, and fate… all have their own language in which biology must be maneuvered" (p.167). In discussions with my interlocutors, genetics remained entrenched in the language of disease, illness and disability, resonating with Parkhurst's findings: "While there exists a robust local knowledge of the mechanisms of inheritance and kinship, genes as biological entities are not part of, and not associated with this inheritance and kinship…. They are widely known to be carriers of disease, but are not often understood to contain the essence of, or the benign traits of a person" (2014:188). Individual Qataris are still grouped according to lineage: one's qabila: one's extended "tribe" or family, remains the fundamental determinant of an individual Qataris social position and future (Fromherz 2012:7). Wealth has re-inforced certain aspects of history and lineage: families now have the opportunity to live in large family compounds with their own mosque (Fromherz 2012), emphasizing family allegiances. Fromherz' discussion of the spatial arrangements of buildings is taken further in Gardner's (2013) account of Doha itself. An anthropologist who has conducted research in Qatar, Gardner makes use of Dresch's discussion of the integral feature of Gulf societies as the accommodation of "foreign matter" and applies it to Doha's urban spatial discourse. The urban spatial discourse involves spatialization and enclaving of globalization and neoliberal flows: The compartmentalization of foreign matter -people, practices, and ideas-is fundamentally an assertion of cultural sovereignty over the domain punctuated by these exceptional spaces. Put another way, this urban spatial discourse is an assertion of Qatari cultural sovereignty over the cosmopolitan and transnational heterogeneity so essential to the developmental goals of state and citizenry. This urban spatial discourse reflects the relationship between a people and the foreign matter they both host and depend upon. This relationship is woven into the shape of the city (Gardner 2013) There is a similar containment of genetic discourse as it relates to risk. Skepticism reflects a rejection of a dominant discourse of genetic risk that stigmatizes cousin marriages (Shaw and Hurst 2008). Such a process resonates with the containment of foreign influences and bodies in the urban space of Doha and the notion of cosmopolitanism found in Education City. Thus, in the case of Qatar, modernization has provided opportunities for containment of the global flows that accompany it. --- Traditional modernists One of the ways that bodies, spaces, ideas, practices and discourses are contained and altered is through an emphasis on tradition. A constant balancing between the forces of modernization and tradition is felt acutely in Qatar: it pervades most aspects of social life. Qatari identities mix modern (i.e., Western) and cosmopolitan (i.e., global) whilst adhering to local customs and traditions. The distinct amalgam of customary and contemporary is a crucial element of most projects in Qatar, from higher education to museums to sports (Harkness & Khaled 2014). Rajakumar (2014) argues the embodiment of this delicate balancing can be seen in the form of Sheikha Moza, the second wife of the former and mother of the current Emir. The Sheikha has played a key public role and was the driving force behind a large number of initiatives, including the development of Education City. She espouses a "plural, liberal interpretation of Islam, which focuses on the religion's emphasis on education, the role of the individual in society, and the betterment of the world" (Rajakumar 2014: 127). Positioning herself as a "modern traditionalist," the Sheikah's recent speeches have increasingly emphasised the blend of Arab identity, modern pragmatism, and importing the best educational models to make Qatar a hub for innovation in the Arab World (Rakakumar 2014:128). This emphasis certainly resonated with what many of us working in/ on Qatar were experiencing: a re-alignment in such a way to de-emphasise the role of foreign experts, with purposeful alignment between Qatar, Arab identity and an emphasis on Arab intellectuals (Rajakumar 2014:138). This seems to be part of a general re-balancing in favour of tradition and Arab culture in the face of increased development and foreign influences. Historical data demonstrate that social changes in the Middle East are sometimes met with conservative reactions that include the enactment of traditional policies and cultural expectations (Harkness & Khaled 2014). Scholars working in Qatar have shown that tribal "tradition" is often increased not decreased with wealth (see Fromhertz 2012, Gardner 2013, Al-Ghanim 2010), particularly in relation to social roles, marriage practices and adherence to traditional dress. For example, the increased use of the hijab in the wake of escalating rates of female employment, education, and athleticism in the region (Jawad, Al-Sinani, & Benn, 2011). Thus, family marriage may be part of this negotiation of the traditional and modern. The continued and increasing popularity of consanguineous marriage may reflect a desire to moderate modernising trends by preserving traditions and customs. Abbasi-Shavazi et al ( 2008) explain the increased rates of consanguinity in Iran as "cultural maintenance… in the persistence of traditional behaviour despite the forces of modernization" (p.917). In a quickly developing nation such as Qatar, the benefit of the effective transmission of culture could create social stability, which in a period of change could have enormous benefits (Sandridge et al. 2010). The potential advantages attributed to family marriage include: greater autonomy for women, benefits such as familial unity, decreased pressures on the bride in her new home, a stronger marital bond with less risk of divorce, greater compatibility of the bride with her husband's family, property retention and effective transmission of the culture from generation to generation (Sandridge 2010;Barth 1953;Khlat et al.1986;Bittles 1994;Ottenheimer 1996). Interlocutors spoke of the importance of familiarity with customs and traditions when looking for a potential spouse for their children. They hinted at notions of purity and authenticity: familiar customs and practices would allow women to effectively impart them to future generations. Indeed, the importance of this is central to Qatari society, as outlined in the Qatar Development Strategy: The family is the basis of Qatari society… Qatar's strong Arab and Islamic identity pervades all aspects of family life and continues to inform the family structure, but changes brought on by external pressures and internal evolution are changing family dynamics…. Women are central to this positive, evolving nature of the Qatari family. Even as they maintain an adherence to valuable traditions, women are adapting to the impacts of modernization. They exemplify the new opportunities available to all Qataris as a result of the country's rapid economic growth and social transition. (p.17). We have argued that whilst aware of the discourse of risk and close marriage, Qataris negotiated with other forms of risk, such as the potential dangers of marrying a daughter to "strangers" (Kilshaw et al 2015). Thus, marriage in the family mean the woman would be more comfortable, have closer ties to her nascent family and would share cultural traditions in order to effectively impart to children. Our interlocutors were often unwilling to accept the idea of disease as inherited, stating that not all members of the family were affected. Panter-Brick (1991) similarly found that unless family history made an inheritance factor obvious, Saudi participants were unlikely to see the condition as genetic and thought genetic illness should affect all children and should appear soon after birth. Whilst aware of the discourse of consanguinity risk, interlocutors seemed unsure of its reality and used anecdotal evidence to support uncertainty. Qatari interlocutors cited examples where cousin couples had many healthy children or referred to families where offspring had disabilities despite the parents being unrelated (see also Panter-Brick 1991). Wadha, a 33year-old mother of nine explained that people often suggest that her son's disability was due to 'inheritance', but she refers to it as 'fate' One of my sisters is married to my father's sister's son and all of her children are normal. Many cases of marrying within the family in our family and nothing happened. When discussing whether or not they thought their child's disability was genetic many would respond saying: "there are no other cases in the family" or "there is no one in the family like [her]." Amna, who offered such an explanation further expanded, saying it was common practice within her family and did not increase risk: No, I don't think so. I think anything is destined to happen whether they are cousins or not. Aisha, the mother of a daughter with autism, believed her daughter's condition to be caused by her emotional state whilst pregnant: I was upset because of problems between her father and I. I was very upset. We had many daily problems. When I was pregnant, I was very stressed and I was always feeling down. It was [the] probable cause of Maryam's condition. In interviews, respondents often saw the benefits of close marriage as outweighing potential risks (Kilshaw et al 2015). Although familiar with the discourse of genetics, participants were ambivalent about genetic risk and pointed to other possible causes. Panter-Brick's (1991) research found that despite an awareness of genetic risk, participants often accounted for illness and disability through explanation such as: 'evil eye', 'God's will' and illness or upset during pregnancy. In particular, in Qatar a woman's physical and emotional state during pregnancy took importance over other forms of explanation. A woman's emotional state would also affect the baby's temperament. In the UAE Parkhurst (2014) found traits mainly coming from the father, with others are "picked up" or absorbed from the mother in utero. Similarly, in the Qatar the father is seen as providing the dominant template for traits, and the mother as "influencing". Indeed, some suggested that all genetic material comes from fathers. Qatari models of inheritance, including social and biological, which are seen as tracking primarily through men have parallels outside this region. The Alawi of Southeastern Turkey have notions of inheritance that stress patrilineaty based on a concept of the differential transmission of male and female blood / genes (Prager 2015). Shaw and Hurst (2008) identified a "cultural blueprint" amongst British Pakistanis that appears to prioritize inheritance through men. Men are seen as the perpetrators of lineage or identity, with a father's genetic contribution to a child, through the substance of blood, stronger than that of the mother's because semen is concentrated in blood (Shaw 2015). A mother's influence is felt in utero but also through her role in raising children including breastfeeding: women were told not to breastfeed when angry or sad so as not to transmit to the baby. A Qatari pregnant woman is supposed to be calm and relatively tranquil. She is to protect her unborn child from outside risks and also from stress, anxiety and upset (Kilshaw et al, 2016), reflecting notions of maternal influence. Pregnant women, women who had recently miscarried and family members of a disabled child all spoke about the importance of a woman's emotional, psychological and physical state when pregnant. Such discussions appeared to take precedence when people were making sense of problems and linked to cultural systems of blame and risk. Thus, despite the fact that everyday notions of inheritance emphasised the man's contribution, problems in pregnancy or with a child are often attributed to maternal influences. Such findings have been found in other contexts: Shaw and Hurst (2008) found that their interlocutors reported that problems in a pregnancy or a child were blamed on the mother's actions during pregnancy (see also Rozario 2013), particularly in relation to attracting jinn as the result of some bad or careless behaviour (Shaw and Hurst 2008;Shaw 2000:209-212). Ultimately, God determines a person's fate, including in granting health, illness or pregnancy loss. Personal or religious beliefs and local understandings of illness causality may mean that genetic problems are viewed as matters of fate, destiny or God's will, as among Muslims in Saudi Arabia (Panter-Brick 1991). --- Conclusions Genetic discourses have taken a predominant role in approaches to combating a number of conditions that affect Qataris. Qataris have increased susceptibility to some diseases and the state's focus on genetics shows its dedication to improving the lives of its citizens and desire to strengthen the nation. Whilst the incentive behind the development of genomic medicine is to improve the nation's health, this currently rests on a narrow understanding of nationhood. This is particularly interesting in a climate where there are increasing calls to widen the scope of genomics to include a wider diversity of people and to harness such knowledge and information for those most in need. This campaign should be seen in relation to the way genetic discourse is accommodated and understood by in Qatar and with an understanding of local configurations through which genetics has been absorbed as part of the "Qatarisation" process. I have pointed towards the multiplicity of discourses where both the global and the local participate in constituting the meaning of genetics, relevance and scope in the Qatar context. The drive is also part of the nation's positioning itself as a modern, leading and cutting edge entity in regards to research, education, and health care. However, whilst the state is eager to incorporate the modern and continue to develop, there is a desire to balance this with an emphasis on Qatari and Arabic tradition. Thus, there is a constant shifting, balancing, re-positioning and re-inventing as the country and its people negotiate global interactions and influences. This paper has described the unevenness of change in Qatar. There have been dramatic lifestyle changes in some areas but not others. Family marriage is one of the main platforms where one can see the way modern, cosmopolitan and tradition are negotiated. Indeed consanguinity has been shown to be at the heart of tensions and negotiations of modernity and tradition in a variety of global contexts (i.e. Shaw 2015;Prager 2015;Shaw and Raz 2015). This paper contributes to the scant literature on the impacts of genetic discourse on genetic risk in consanguineous marriage in diverse global settings (Shaw and Raz 2015) through a focus on the Qatari context. I have aimed to reveal some of the ironies and contradictions in the focus on genomics as a key area in the quest of modernity because inheritance is simultaneously the key to tradition. Tradition itself is central to the process of containment of outside forces and undesirable change.

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Is Sociodemographic Status Associated with Empathic Communication and Decision Quality in Diabetes Care?

To assess the relationship between empathic communication, shared decision-making, and patient sociodemographic factors of income, education, and ethnicity in patients with diabetes. RESEARCH DESIGN AND METHODS: This was a crosssectional study from five primary care practices in the Greater Toronto Area, Ontario, Canada, participating in a randomized controlled trial of a diabetes goal setting and shared decision-making plan. Participants included 30 patients with diabetes and 23 clinicians (physicians, nurses, dietitians, and pharmacists), with a sample size of 48 clinical encounters. Clinical encounter audiotapes were coded using the Empathic Communication Coding System (ECCS) and Decision Support Analysis Tool (DSAT-10).The most frequent empathic responses among encounters were "acknowledgement with pursuit" (28.9%) and "confirmation" (30.0%). The most frequently assessed DSAT components were "stage" (86%) and knowledge of options (82.0%). ECCS varied by education (p=0.030) and ethnicity (p=0.03), but not income. Patients with only a college degree received more empathic communication than patients with bachelor's degrees or more, and South Asian patients received less empathic communication than Asian patients. DSAT varied with ethnicity (p=0.07) but not education or income. White patients experienced more shared decision-making than those in the "other" category. CONCLUSIONS: We identified a new relationship between ECCS, education and ethnicity, as well as DSAT and ethnicity. Limitations include sample size, heterogeneity of encounters, and predominant white ethnicity. These associations may be evidence of systemic biases in healthcare, with hidden roots in medical education.

INTRODUCTION Despite advances in medicine, social and economic factors contribute to 50% of a population's health status 1 (Canadian Institute for Advanced Research, Health Canada, 2002), and some estimate that less than 10-15% of mortality is preventable by medical care, with the remainder being attributed to social factors 2 . For example, citizens living in the 1% or 5% highest income counties in the USA had better health outcomes compared to average US citizens 3 . In contrast, those with lower socio-economic status had a greater prevalence of psychological and chronic health conditions 4 . These health disparities arise from historical inequities that result in decreased access to clean environments, housing, quality nutrition, and health care. This in turn predisposes to chronic stress and chronic disease development 5 . Patient-centered care is a vital component of health care that improves the physical and psychosocial well-being of patients 6 . Shared decision-making, a component of patientcentered care 6 , involves assessing the patient's decisionmaking needs, providing individualized support and evaluating patient goals to arrive at a quality decision informed by evidence and patients' values and preferences 7 . Shared decision-making is associated with improved patient satisfaction and engagement in care 8 . Shared decision-making is facilitated by empathic communication 9 ; it encompasses the cognitive capacity to understand a patient's needs, an affective sensitivity to the patient's feelings, and a behavioral ability to convey this to the patient 10 . A 2002 meta-analysis of medical interactions in primary care demonstrated that increased physician empathy was associated with increased patient satisfaction, adherence, comprehension, and perception of a good interpersonal relationship 11 . Diabetes is a complex chronic disease that disproportionately affects racialized groups and those of lower socioeconomic status worldwide, with these groups experiencing increased prevalence, lower life expectancy, and increased complications of diabetes 5 . For example, in the USA, the risk of type 2 diabetes is 66% higher in Hispanic people and 77% higher in Black people 12 than white people. In Canada, Indigenous people are three to five times more likely to have type 2 diabetes than non-Indigenous people 13 . Both low income and education are also associated with increased prevalence of diabetes: individuals with lower income and education are two to four times more likely to develop diabetes than more advantaged individuals 14 . In those with diabetes, low socioeconomic status was associated with a two-fold greater risk of all-cause, cardiovascular-and diabetes-related death compared to high-income counterparts 15 . A recent population-based study in the UK by Riley et al. (2021) showed that social deprivation is an independent risk factor for developing diabetic foot disease and related complications 16 . Health disparities also exist in the receipt of patient-centered care, which may then worsen care gaps. National survey data demonstrate that racialized low-income patients in the USA perceive that they receive less patient-centered care, including less shared decision-making, trust and empathic communication, and as a result are less satisfied with their care 17 . Similarly, people living in areas of high deprivation (i.e., low income and education) in Scotland perceive their physicians as less empathic and had less desire for shared decisionmaking 18 . A survey study found that physicians viewed Black patients and patients of low and middle socioeconomic status as less intelligent, less rational, and less likely to adhere to medical advice or follow-up, than White and high socioeconomic status patients 19 . Additional studies using audiotapes and videotapes of patient-clinician encounters, as well as patient self-report, demonstrate that clinicians exhibit less empathic and participatory communication (characterized by information sharing and patient involvement in discussion) towards racialized and low income patients 20 . These implicit biases impact physicians' communication and clinical decision-making 19,20 , and may impact patient outcomes. Specific to diabetes care, clinician empathy has been associated with increased patient satisfaction, quality of life, reduced HbA1c, LDL cholesterol, and fewer diabetes complications 21 . However, little is known about the relationship between social determinants of health, clinician empathy, and shared decision-making in a diabetes-specific population. Thus, we sought to quantify the relationship between empathic communication, shared decision-making, and sociodemographic factors of income, education, and ethnicity, using validated scales. Our primary objective was to evaluate the relationship between empathic communication and patient education, income, and ethnicity in individuals with diabetes attending primary care clinics in the Greater Toronto Area. The secondary objective was to evaluate the relationship between shared decision-making and patient education, income, and ethnicity in this same population. We hypothesized that patients with lower education, income and from ethnic minorities would experience less empathic communication and shared decision-making compared to those with high education, income, and patients who identified as white. Specifically, empathic communication will be quantified by the Empathic Communication Coding System (ECCS) 10 an observer-rated measure of empathy, which has not been studied in this context before. Shared decision-making will be quantified by with the Decision Support Analysis Tool-10 (DSAT-10) 22 an observer-rated measure of a clinician's ability to engage a patient in shared decision-making. --- METHODS --- Overview and Study Design This is a cross-sectional study and secondary analysis of clinical encounter transcripts from a large randomized controlled trial that evaluated the impact of interprofessional shared decision-making tools for patients with diabetes and other comorbidities, on decisional conflict 23 . Sample size was based on 48 available audiotapes from the original study. We reported according to Strengthening the Reporting of Observational Studies (STROBE) guidelines for a cross-sectional study (Supplemental Table 1), with details on the original study and recruitment published elsewhere 24 . --- Settings and Participants The previous study was a 10-site cluster randomizedcontrolled trial 25 . The trial recruited 53 clinicians from primary care practice groups across the GTA, one of the most multicultural cities in the world, where 51.5% of the city belonged to a visible minority 26 . Within each consenting clinician's practice, patients 18 years of age or older, with diabetes and 2 other comorbidities were randomly selected and invited to participate in a study using a web-based goalsetting and shared decision-making aid via telephone, with a total of 213 patients included. Exclusion criteria included those who did not speak English, had documented cognitive deficits, were unable to provide consent, had limited life expectancy (<1 year), or were not available for a follow-up. In order to assess intervention fidelity during the trial (that is, how was MyDiabetesPlan used during the encounter), 48 clinical encounters were audio-recorded then transcribed. This constituted the data source for the current study. --- Study Outcomes The primary outcome was empathic communication, measured using ECCS. The secondary outcome was shared decision-making, measured using DSAT-10. --- Data Sources We used patient-reported sociodemographic information and transcripts of clinical encounters. Patients self-reported their ethnicity, education, and income through an online or mailed survey at the start of the prior trial. In the original study, clinical encounters were audiotaped for qualitative analysis to inform future iterations of the shared decision-making intervention. Of note, the prior study also consisted of patient questionnaires for patient-reported outcomes of decisional conflict, diabetes distress, assessment of care, and quality of life; however, these were not used in the present study. --- Data Collection Tools Assessment of Empathic Communication. We conducted qualitative coding of the clinical encounter transcripts to derive a score for empathic communication, using ECCS. ECCS is an observer-rated measure of clinician empathy that measures empathy by examining clinician empathic responses to patient-created opportunities, with responses subsequently categorized on a scale from 0 (denial) to 6 (shared experience) (Supplemental Table 2). Because it is observer-rated, it eliminates biases associated with self-report. Assessment of Decision Quality. We conducted qualitative coding of the clinical encounter transcripts to derive a score for decision quality using DSAT-10. The DSAT-10 evaluates the clinician's ability to address the status of the decision; the patient's knowledge of the options, benefits, and harms; the patient's values and preferences associated with the decision; assessment of the involvement of others; and the patient's preferred role in the decision-making and the next steps 22 . The DSAT-10 scale ranges from 0 to 10, with higher scores indicating more decisional support during the patient-clinician interaction (Supplemental Table 2). Because it is observerrated, it eliminates biases associated with self-report. --- Data Analysis Audio-recordings of the clinical encounters were transcribed verbatim and coded independently using ECCS and DSAT by two team members with expertise in qualitative coding. The first 20 transcripts were double coded until an inter-rater agreement of 75% was attained. Coders were blinded to participant characteristics. We then calculated the weighted average empathy score from the ECCS and the total score from the DSAT-10. The unit of analysis was the transcript, so the average empathy score was calculated by dividing the total score by the number of empathic opportunities per encounter. The DSAT-10 score was reported as a total score out of 10. We a priori selected to evaluate the relationship between sociodemographic factors of education, income, and ethnicity with ECCS and DSAT-10. --- Statistical Methods We used descriptive statistics to describe the characteristics of participants (patients and clinicians) and clinical encounters. For the primary outcome, we used one-way ANOVA to examine the effect of the categorical independent variables (income and education) entered as between-subjects factors, on our continuous dependent variable ECCS. If there was a significant effect of any factor, we conducted exploratory post hoc Tukey's to determine which groups differed from each other 27 . For ethnicity (white vs. non-white; binary outcome), we used 2 independent sample t-test. For the secondary outcome, we used the Kruskal-Wallis test to examine the effect of the categorical independent variables (income and education) on our ordinal dependent variable DSAT 28 . If there was a significant effect of any factor, we conducted exploratory post hoc Dunn tests to determine which groups differed from each other 27 . For ethnicity, we used Mann-Whitney test. We conducted a Benjamini-Hochberg procedure to correct for multiple comparisons, a moderate false discovery rate of 0.15, given the exploratory nature of this study 29 . All analyses were done using SPSS Statistics for Windows, Version 20.0 30 . --- RESULTS --- Characteristics of Patients, Clinicians, and Clinical Encounters We analyzed a total of 48 clinical encounters, involving 30 unique patients and 23 unique clinicians. Sociodemographic characteristics of patients and clinicians are indicated in Table 1. There were 26 male patients (54%) and 22 female patients (46%). The majority of patients were within the age ranges of 65-74 years old (50%) and retired (64%), with annual income >$60,000 (53%). The sample was primarily white (69%), with income and education being fairly uniform among patient demographics. All patients had type 2 diabetes, with the exception of 1 nonrespondent. Clinicians consisted mostly of family physicians, 61% of which were female, and majority (48%) had more than 16 years of practice (Table 1). Clinical encounters ranged in length from 3 min 55 s to 1 h 30 min, with a mean length of 31 min 26 s (SD 15 min 33 s). Mean ECCS score across all clinical encounters was 3.5 (standard deviation (SD) = 0.8). The most frequent empathic responses were "acknowledgement with pursuit" (29 %) and "confirmation" (30.0%) (Table 2). Mean DSAT score across all clinical encounters was 3.9 (SD = 1.8). The most frequently assessed DSAT components were the stage of decisionmaking (present in 86% of encounters) and intervening to provide the knowledge of options (present in 82% of encounters). The least frequently assessed DSAT components were assessing and intervening regarding the preferred role of the patient (present in 16% and 14% of encounters respectively) (Table 3). --- Relationship Between Patient Sociodemographic Factors and Empathic Communication (Primary Outcome) We found that ECCS was varied by education (p=0.030) and ethnicity (p=0.030), but not income (Table 4). Post hoc analyses of the former revealed that patients with only a college degree received more empathic communication than patients with bachelor's degrees or more, and South Asian patients received less empathic communication than Asian patients (Table 4). --- Relationship Between Patient Sociodemographic Factors and Shared Decision-Making (Secondary Outcome) We found that DSAT varied with ethnicity (p=0.07) but not education or income (Table 4). Post hoc analyses of the former revealed that white patients experienced more shared decisionmaking than those in the "other" category (Table 4). To correct for multiple comparisons, we conducted a Benjamini-Hochberg procedure using a conservative false discovery rate of 0.15. The comparison between DSAT and patient ethnicity had the highest P (=0.07) that was less than its critical Benjamini-Hochberg value (0.08), thus confirming that all preceding comparisons (ECCS and ethnicity, ECCS and education) were significant. The rank table is included in Supplemental File 2. --- DISCUSSION Our study demonstrated that ECCS was varied by education and ethnicity, such that patients with only a college degree received more empathic communication than patients with bachelor degrees or higher, and South Asian patients received less empathic communication than Asian patients. In addition, we found that DSAT varied by ethnicity, such that white patients received more shared decision-making than nonwhite patients/"other." --- Interpretation of Findings/Relevance to Literature These findings are consistent with the existing literature that racialized individuals and those with lower SES perceive less empathy and shared decision-making in healthcare interactions 31 . However, we found that patients with only college education received more empathic communication compared to those with a bachelor degree or higher, which reveals a new finding that is contrary to the overarching trend in the literature, despite controlling for income and ethnicity 32 . Although several studies have demonstrated that individuals with low income, education and from ethnic minorities experience less empathic communication and shared decision-making, we provide objectively assessed, quantitative evidence of these relationships, in a clinical populationindividuals with type 2 diabetesthat is characterized by ethnic and socioeconomic diversity; these relationships existed despite the study being conducted in a multicultural geographic setting during an era with growing awareness of considerations for equity, diversity, and inclusion. These associations are concrete evidence of systemic bias in healthcare, with roots in medical education. Empathy decreases throughout medical training 33 . Further, studies of medical trainees' attitudes towards racialized populations have demonstrated a "pro-white" bias in empathic communication and treatment, in that medical trainees held false beliefs regarding black patients' perception of pain which led to undertreatment 20 . This was confirmed in a systematic review by Hall and colleagues, which showed that healthcare providers have implicit biases in terms of negative attitudes towards people of color, which impacted patient-provider interactions, treatment decisions, and patient health outcomes 34 . Similarly, patients of lower socioeconomic status perceive less access to care, altered physician-patient interaction (feeling like they are listened to), and differences in management plan (such as reduced diagnostic testing) 35 . Taken together, strategies must be implemented at the medical education level to foster empathy and address these biases that are often part of the hidden curriculum. Examples of strategies to enhance empathic communication include assessing provider patient-centered communication at the point-of-care, education among peers, and mentorship by clinicians who score highly on patient-rated scales of patient-centered communication 36 . Strategies to address systemic bias in medical education include standardized anti-racism and anti-bias training 37 as well as implementation of a structural competency framework, including improving recruitment, promotion and retention processes of faculty, "stop the line" processes for racism, and the use of a community council to review health equity initiatives and provide feedback on performance 38 . --- Strengths and Limitations First, our study was limited by small predominantly white sample; however, this was a hypothesis-generating exploratory study wherein we a priori selected specific outcomes and statistically controlled for multiple comparisons. Second, because our findings were based on audio-recordings of clinical encounters alone, we were unable to assess non-verbal empathic communication, a key component of empathic communication 18 . Third, heterogeneity of appointment type (i.e., follow-up vs. initial appointments) may have resulted in differing levels of empathic communication and shared decisionmaking, given that shared decision-making is longitudinal in nature occurring over several appointments 8 . We tried to account for this heterogeneity by adjusting for the number of empathic opportunities per encounter; however, we could not adjust the overall DSAT score based on encounter length because of scale properties. Fourth, we did not examine the impact of clinician factors on empathy or shared-decisionmaking, including burnout, workload, gender, and training 32 , which may have influenced our results. Study strengths include our use of objective third-party observer-rated scales not previously used in this context that reduce bias associated with patient or clinician self-report. Second, we captured representative clinical encounters with different clinicians, including physicians, nurses, and dietitians, consistent with interprofessional diabetes care. --- NEXT STEPS AND IMPLICATIONS Our research has implications for medical education, clinical practice, and research. That empathy declines with medical training and that racial biases are prevalent in medical trainees call into question the adequacy of medical education in preparing physicians to care for patients with a lens of social justice. Several professional organizations have advocated for education interventions to prepare medical trainees to care for the needs of a culturally diverse population including cultural competency training 39 , and incorporating critical reflection and dialogue into curriculum to address biases and assumptions that shape healthcare interactions 40 . In terms of clinical implications, our research underscores the importance of clinical interventions such as shared decision-making tools to empower patientsin particular racialized individuals and those of lower income and educational attainmentto become involved in their healthcare. Additional supports such as interprofessional teams and peer coaches 36 should be leveraged to enable patients in vulnerable groups to play an active role in their care. In terms of implications for research, future studies should confirm our findings, and specifically assess the trend of education level and empathy in a larger and more diverse patient population during chance encounters. Triangulation of objective rating of empathic communication (as in our study) with patient self-report of empathy as well as the patient lived experience using qualitative methodology would enhance our understanding. Future studies could also test the impact of patient-directed interventions (such as peer coaches) as well as clinician-directed interventions (such as professional development regarding implicit bias aimed at improving empathic communication or shared decision-making) in specific vulnerable populations. --- Supplementary Information The online version contains supplementary material available at https://doi.org/10.1007/s11606-021-07230-5. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons. org/licenses/by/4.0/. --- Author Contribution Publisher's Note: Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Racism in the film The Little Mermaid: Assessing its impact on social media

The controversy surrounding the casting of Halle Bailey, a black actress, as Ariel in the live-action adaptation of "The Little Mermaid" has sparked discussions about racism and representation in the media. Some people have rejected the idea of a black actress playing the role of a character who was initially depicted as white. The controversy highlights the ongoing struggle for representation and diversity in the entertainment industry. This research aims to see how people respond to the film The Little Mermaid in real life with a black main character. The Little Mermaid, a Disney classic, has been controversial due to the casting of a Black actress, Halle Bailey, as Ariel in the upcoming live-action remake. Some people have refused to accept a Black actress like Ariel, which illustrates how a white-centric perspective requires a more profound understanding. The backlash against the movie has led to abysmal box office numbers in China and South Korea, showing the global reach of anti-Blackness. However, the importance of representation in media has been highlighted, and casting a Black actress as Ariel is seen as a positive step towards diversity and acceptance. The negative attention on The Little Mermaid has fueled a groundswell of support from other fans who view such anger as founded in racism.

Introduction Discrimination is a systemic arrangement that molds opportunities and assigns value depending on the societal interpretation of physical appearance, which is frequently referred to as "race." (Jones CP, 2023)Certain individuals and communities are unfairly disadvantaged by this system, while others are unfairly benefited by it. As a result, the strength of the entire community is ultimately depleted as a result of the inefficient utilization of human resources. In order to promote talks, it is helpful to define racism as a systemic issue rather than an individual weakness, personal moral shortcoming, or psychiatric disease. This shift away from the contentious notion of categorizing individuals as either racist or not constitutes a significant step toward achieving this goal. It emphasizes that everyone has a stake in destroying this system and replacing it with one that enables all individuals to fulfill and develop their full potentials by recognizing that racism weakens the strength of the entire society. This is done by realizing that racism undermines the strength of the entire society (Miller et al., 2019). For example, my novel Gardener's Tale depicts three layers of racism: institutionalized, personally mediated, and internalized (Jones CP, 2000). It also places a significant emphasis on the necessity of addressing institutionalized or structural racism in order to repair flaws that are present in our society's "garden." Additionally, the relevance of addressing the ways in which racism shapes possibilities and the ways in which it assigns worth is brought to light by this narrative. Even if the gardener were required to enhance the poor, rocky soil to equal the richness of fertile soil, the preference for red blooms over pink blossoms would continue to exist if the issue was not addressed. In the context of our attempts to combat racism, this narrative highlights the significance of addressing both opportunity structures (the unequal access to social goods, services, and opportunities that are based on "race") and value assignments (the ideology of white supremacists) (Jones CP, 2000). The impact of racism on social media is quite substantial and has a variety of complex implications in today's day and age society. The use of social media platforms offers a wide range of opportunities for social contact; but, in certain instances, these platforms have become a medium through which racist attitudes are disseminated, reinforced, and maintained. Social media platforms have the potential to serve as a venue for the propagation of hate speech and racial prejudice. Numerous users of social media sites make advantage of these channels in order to publicly express their racist beliefs, so creating an environment that is both unsafe and destructive for minority groups. During the same time period, this phenomenon has the potential to generate polarization as well as wider social conflicts. The use of social media platforms can be a tool for the perpetuation of racial prejudices and stereotypes (Chetty &Alathur, 2019). Through the transmission of photos, memes, and other content, these platforms have the potential to reinforce limiting beliefs about particular groups, so establishing perceptions of those groups that are shallow and negative. The problem of "hate algorithms" operating on certain platforms might result in the construction of information bubbles, in which people are largely exposed to viewpoints that are congruent with their own ideas. A greater understanding between groups can be hampered as a result of this, which can also exacerbate social division.On the other hand, social media platforms can also serve as a means of resistance and activism against white supremacy. Through the use of these platforms, campaigns, protests, and civil rights movements are frequently coordinated and documented (Matamoros-Fernández & Farkas, 2021). This provides a voice to underrepresented groups and raises awareness about racial concerns.Therefore, the impact of racism on social media generates a number of complex challenges that must be overcome in order to achieve an online environment that is inclusive and equitable. It is necessary for platforms, users, and politicians to work together in order to reduce the negative effects of social media and make the most of its potential as a constructive instrument in the fight against racism and the promotion of mutual understanding among various groups. Social media serves as a powerful arena for public discourse, offering a dynamic space where individuals from diverse backgrounds can voice their opinions and engage in discussions about the cultural implications of films like "The Little Mermaid." Through hashtags, tweets, and posts, users amplify their voices, sparking a digital dialogue that critically assesses the film's representation of race. This essay aims to explore how these discussions unfold, examining the various perspectives that emerge on platforms such as Twitter, Instagram, and TikTok (Chetty &Alathur, 2019). Humans are created with various physical forms. Starting from face shape, body, hair color, skin color and others. We will discuss skin color, human skin color is very diverse, ranging from white, olive, brown and black. On various continents in the world, people have different skin colors. For example, on the European continent, the population there is predominantly white, whereas on the African continent the majority of the population has dark skin. Well, this is one of the differences between each continent throughout the world.Each country has its own beauty standards, such as in Asia the standard of beauty is having white skin, in Japan having crooked teeth, in America having dark skin, in Mindanao the Philippines having sharp teeth, and many more, because of this. there is a lot of racism when we visit other countries.Actually, not in all countries this can happen. However, there have been many incidents such as cases of people with dark skin that have occurred in several countries such as America and China. As happened this year when the film was released with the title The Little Mermaid. This American film has caused a lot of controversy because the main actor has dark skin color.Especially in China and South Korea, their lack of interest in the film The Little Mermaid is because, as is known, Ariel is known to have pure white skin. However, the reality is that the player who plays Ariel has dark skin color. Apart from that, they thought that the film had damaged their imagination about the figure of Ariel, who they knew had white skin. We will discuss this in more depth. In this paper, we can see the impact of racism in The Little Mermaid on society by using Wolfgang Iser's literary theory approach. Iser's theory of reading activities includes the concept of meaning mining and the role of the reader as an active constructor in understanding literary works. By applying this theory, we can analyze how the messages of racism in this film can affect our interpretation and perception of racial and ethnic differences. sIn an era where inclusion and awareness of cultural diversity are increasingly important, movies, as one of its popular forms, have the power to shape people's opinions and attitudes. For this reason, it is important to examine how racist messages in films such as The Little Mermaid are widely received and perceived, especially by younger audiences, who are the main target audience of this animated film. Iser's theory introduces a useful tool to examine how audiences interact with film narratives and how they contribute to constructing the meaning of the film. In the context of racism in The Little Mermaid, Iser's theory can help us understand how audiences interact with elements of racism hidden in the film, both consciously and unconsciously. Through an in-depth analysis of stereotypical representations, the portrayal of certain characters, and the narrative as a whole, we can gain a greater understanding of how these influences can create negative and detrimental impressions of certain groups in society. By considering Iser's theory, we will also look at how individual interpretations play a role in influencing our perceptions and attitudes towards the heightened racial and ethnic issues in the movie. In addition to looking at the consequences of racism in The Little Mermaid on an individual level, we will also look at how screenings of this movie can influence children's mindsets and the long-term impact in creating an inclusive culture or reinforcing harmful stereotypes. Then, by considering Iser's theory, we can see how the role of the audience, especially children, contributes to shaping their own understanding of racial and ethnic issues. Throughout this paper, we will discuss and critically evaluate racism in The Little Mermaid using Wolfgang Iser's theoretical approach. Through in-depth understanding and analysis, we will understand the impact it may have on society. In addition, we can also reflect on how the handling of racism in this movie can provide opportunities for better teaching and understanding of racial and ethnic issues that exist in and around us. By using Iser's theory as a framework, we can dig deeper to gain a broader and more objective perspective on racism in The Little Mermaid and its implications on our society. The film "The Little Mermaid," a beloved classic from the Disney canon, has been a source of fascination and critique from various points of view, particularly in its portrayal of black people. This iconic animated tale, initially released in 1989, has recently come under scrutiny for its casting choices and representation, sparking discussions about diversity and inclusion in the world of entertainment. "The Little Mermaid" follows the journey of Ariel, a curious and adventurous young mermaid who dreams of experiencing life on land. While the film's narrative primarily centers on Ariel's pursuit of love and independence, it has also been examined through a lens that highlights the lack of racial diversity and representation in its characters. One notable point of view centers around the casting of the main character, Ariel. In 2019, Disney announced that Halle Bailey, a talented African-American actress and singer, would be portraying Ariel in an upcoming live-action adaptation of the film. This casting decision was met with both enthusiastic support and backlash, shining a spotlight on the broader conversation surrounding racial representation in the entertainment industry. Critics argue that the rejection of the world community, in this context, reflects a historical pattern of underrepresentation and exclusion of black people in mainstream media, including animated films. The discussion extends beyond "The Little Mermaid" to encompass the larger issue of diversity in Hollywood and the importance of offering more inclusive narratives that reflect the diverse makeup of our global society. In this introduction, we will explore various perspectives on the rejection of the world community's views toward black people within the context of "The Little Mermaid," shedding light on the film's impact and its role in the ongoing conversation about representation in the entertainment industry. --- Discussion Researchers and academics utilize a complicated set of criteria to identify and assess the multifaceted nature of racism, which is a social problem that has been around for a long time and has deep historical roots (Banaji et al., 2021). The fact that racism is a systemic phenomenon, meaning that it goes beyond individual prejudices and encompasses institutional and structural inequities, is one of the most important categories of criteria. One of the most important indicators of systemic racism, according to the arguments of academics, is the fact that racial inequities continue to exist inside a variety of society institutions, such as the criminal justice system, healthcare, and education. For the purpose of comprehending the pervasive influence that racism has on a societal level, it is essential to investigate policies and behaviors that disproportionately affect specific ethnic groups (York, 2018). In the academic discourse on racism, implicit bias is another criterion that is regularly covered and investigated. This idea acknowledges the fact that racial biases can arise unconsciously, so affecting the decision-making process and contributing to the perpetuation of discriminatory behavior (Banaji et al., 2021). The psychological aspects of racism are investigated by researchers, who analyze the ways in which deeply ingrained prejudices and stereotypes can influence the attitudes of individuals and lead to larger-scale institutional disparities. When it comes to understanding the subtle yet significant ways in which racism manifests itself in a variety of aspects of life, it is vital to unravel the nuances of implicit bias (Sophia &Kulaszewicz, 2015). One of the most important criteria for comprehending racism is the historical background. The historical legacies of colonization, slavery, and structural oppression are believed to be necessary in order to comprehend the modern expressions of racism, according to the arguments of academics. In order to establish comprehensive solutions to address and repair systemic racism, it is necessary to investigate the ways in which systemic racism continues to resonate in the power structures and societal dynamics of the current day.One of the criteria that emphasizes the connectivity of different forms of oppression and social identities is called intersectionality. It is the contention of researchers that racism does not exist in a vacuum but rather interacts with other types of discrimination, such as biases based on classification and gender (Matamoros-Fernández & Farkas, 2021). A more nuanced understanding of the various manifestations of racism can be gained by first acknowledging the complicated ways in which individuals experience several layers of oppression. The identification of racism in everyday interactions can be accomplished through the use of microaggressions, which are small but significant criteria. Derogatory messages are communicated through these brief, often inadvertent, verbal or behavioral slights, which lead to an environment that is hostile toward people of different races. When it comes to understanding the varied ways in which racism presents itself on an interpersonal level, academics stress the need of recognizing and resolving microaggressions.Through the appropriation or denigration of cultural practices and symbols that are linked with particular racial or ethnic groups, cultural racism develops as a criterion that investigates how racial biases present themselves in the world. The media and popular culture are responsible for the perpetuation of cultural stereotypes, the reinforcement of racial hierarchies, and the formation of biased perspectives, as this criterion sheds light on (Shiao& Woody, 2021). Certain regions might become racist as a result of structural disadvantages or discriminatory behaviors, and racialized spaces and place-based discrimination are two criteria that bring attention to this phenomenon. The geographical elements of racism and the unequal distribution of resources are brought to light by the research conducted by academics who explore the ways in which individuals may be confronted with exclusive issues as a result of the racist environments in which they reside (York, 2018). Walt Disney Pictures created the animated feature The Little Mermaid. The film is based on the beloved tale by Hans Christian Andersen about Ariel, a mermaid who longs to be a human. The following elements can be taken into account while analyzing this movie. First, narrative the movie has a compelling plot with a distinct beginning, middle, and finish. Ariel's ambition to travel and find her true love are the primary sources of tension in the story. Characterization: This movie has welldeveloped characters. Ariel is characterized as a bold and adventurous mermaid with a strong personality. Ursula and other antagonistic characters possess powerful traits as well. Images and Animation, this movie has strange and magical animation. Beautiful visual elements abound, particularly when illustrating the undersea environment and well-known musical moments like "Under the Sea" and "Part of Your World." Music, this movie has a number of well-known and memorable tunes. Alan Menken's music and Howard Ashman's words combine to provide the audience a fully immersive experience. Tema, this film explores themes of self-identity and searching, selfeducation, and cinning with tulus. King Triton, the head of the duchy, and Ariel's sahabat, Flounder, were also Ariel's neighbors and benefactors. Moral lesson,the Little Mermaid emphasizes the need of accepting oneself and forgiving oneself. Ariel accepts the consequences of her actions and learns to understand what is, in all honesty, important in her life. This is a summary of the Little Mermaid movie analysis. Every film analysis might vary depending on the background information and advice provided by writers. According to Iser literary texts can only produce a response when read. Therefore, it is impossible to describe the (reader's) response without analyzing the reading process.The analysis carried out was on social media, where the search for comments on social media related to the film The Little Mermaid. Below are some of the comments found. --- Data Presentation a. Table This research is based on negative comments for the film on Instagram, where several comments we took as 'screenshot' evidence prove that many people still criticize the black main character in this film. Because it's mostly Disney. Princess has white skin according to Brownmiller (2013, 145) indeedconsidered feminine and often complimented. In terms of the pros and cons of the main actors, there are still many people who think straight that each actor or character cannot be seen physically, especially skin color, because basically, the remake of this film will be judged based on the quality of the actor's acting. The following are some comments regarding the Little Mermaid film: 1) 2) This work is licensed under Creative Commons Attribution-ShareAlike 4.0 Internasional. Copyright © 2024, Elvira Eka Jayanti, et al. --- 3) 4) From the data table, several comments were found which were more towards hate comments, but there were also some positive comments. This explains that the little mermaid film is actually a good film, but it goes back to the beginning because the main character has a very different skin color from the Ariel in the cartoon. This makes many assumptions of negative comments. This data was taken from several social media such as Instagram, YouTube and Twitter. --- A. Comments 1 In comment one as we saw in the initial comment he mentioned that stop blaclwashing because he hasn't seen the film. Some people may not have watched the film because after seeing the trailer, the main character turns out to have different skin, so maybe they are too lazy to watch the film. But in the second comment, it is actually the opposite of the first comment, in the second comment it actually leads to a worse comment because there are black putrid words. --- B. Comments 2 The second comment is in the form of an opinion that expresses someone's disappointment with the film The Little Mermaid. He probably had more hopes for the film because the Ariel cartoon was his favorite cartoon. But what can I do just because the main character causes him to have an opinion like that? --- C. Comments 3 Comment 3 in the first comment said that it was not as expected but he still said that the film was still good. The second comment is more insulting or mocking because it says that the main character lives mostly at sea and forgets to wear sunblock so his skin burns. --- D. Comments 4 In comment 4 it is almost the same, in this comment they also express their disappointment with the film which was later released but did not meet their expectations. These comments are a sign that the main problem is about the main character. Even though in fact there is nothing wrong with the main character just because of the color of his skin, this has caused a lot of controversy. --- Conclusion The controversy surrounding the casting of Halle Bailey, a black actress, as Ariel in the live-action adaptation of "The Little Mermaid" has sparked discussions about racism and representation in the media. Some people have rejected the idea of a black actress playing the role of a character who was originally depicted as white. The controversy highlights the ongoing struggle for representation and diversity in the entertainment industry. The purpose of this research is to see how people respond to the film The Little Mermaid in real life with a black main character. The Little Mermaid, a Disney classic, has been the subject of controversy due to the casting of a Black actress, Halle Bailey, as Ariel in the upcoming live-action remake. Some people have refused to accept a Black actress in the role of Ariel, which illustrates how a white-centric perspective requires deeper understanding. The backlash against the movie has led to abysmal box office numbers in China and South Korea, showing the global reach of anti-Blackness. However, the importance of representation in media has been highlighted, and the casting of a Black actress as Ariel is seen as a positive step towards diversity and acceptance. The negative attention on The Little Mermaid has fueled a groundswell of support from other fans who view such anger as founded in racism. Humans are created with various physical forms, including diverse skin colors. Each country has its own beauty standards, leading to racism when visiting other countries. The film "The Little Mermaid" has caused controversy due to the main actor having dark skin color, leading to lack of interest in China and South Korea. This paper aims to analyze the impact of racism in The Little Mermaid on society using Wolfgang Iser's literary theory approach, focusing on how the messages of racism in the film can affect interpretation and perception of racial and ethnic differences. In an era where inclusion and awareness of cultural diversity are increasingly important, it is important to examine how racist messages in films are widely received and perceived, especially by younger audiences. The film "The Little Mermaid" has been a source of fascination and critique, particularly in its portrayal of black people. The casting of Halle Bailey, an African-American actress, as Ariel in an upcoming live-action adaptation of the film, has sparked discussions about diversity and inclusion in the entertainment industry. Critics argue that the rejection of the world community's views toward black people reflects a historical pattern of underrepresentation and exclusion of black people in mainstream media, including animated films. The discussion extends beyond "The Little Mermaid" to encompass the larger issue of diversity in Hollywood and the importance of offering more inclusive narratives that reflect the diverse makeup of our global society.

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Child and family experiences of a whole-systems approach to physical activity in a multiethnic UK city: a citizen science evaluation protocol

Introduction Whole-systems approaches are being adopted to tackle physical inactivity. The mechanisms contributing to changes resulting from whole-systems approaches are not fully understood. The voices of children and families that these approaches are designed for need to be heard to understand what is working, for whom, where and in what context. This paper describes the protocol for the children and families' citizen science evaluation of the Join Us: Move, Play (JU:MP) programme, a whole-systems approach to increasing physical activity in children and young people aged 5-14 years in Bradford, UK.The evaluation aims to understand the lived experiences of children and families' relationship with physical activity and participation in the JU:MP programme. The study takes a collaborative and contributory citizen science approach, including focus groups, parent-child dyad interviews and participatory research. Feedback and data will guide changes within this study and the JU:MP programme. We also aim to examine participant experience of citizen science and the suitability of a citizen science approach to evaluate a whole-systems approach. Data will be analysed using framework approach alongside iterative analysis with and by citizen scientists in the collaborative citizen science study. Ethics and dissemination Ethical approval has been granted by the University of Bradford: study one (E891focus groups as part of the control trial, E982-parentchild dyad interviews) and study two (E992). Results will be published in peer-reviewed journals and summaries will be provided to the participants, through schools or directly. The citizen scientists will provide input to create further dissemination opportunities.

INTRODUCTION Physical activity levels and impacts Across Europe, less than one-third of people aged 2-18 years old achieve the recommended 60 min of moderate-to-vigorous physical activity per day. 1 Such high levels of physical inactivity are fuelling a worldwide public health problem and negatively impacting children's physical fitness, cardiometabolic health, bone health, cognitive outcomes, mental health and adiposity. 2 3 Physical activity levels reduced further during the COVID-19 pandemic, 4 with recent evidence suggesting the reductions have remained post-lockdown. 5 Children from socially disadvantaged areas and ethnic minorities-who were already the least active-were most negatively impacted by the COVID-19 pandemic, further exacerbating health inequality. [6][7][8][9] Additionally, across all age groups, girls are less active than boys, creating gendered health inequity. 1 Progressing to whole-systems approaches to physical activity To date, most interventions have focused on individual behaviour change, resulting in minimal effects on physical activity behaviours. 10 11 To address this issue, the WHO Global Action on Physical Activity report proposes a systems-based approach, involving cross-government, multisectoral partnerships and community engagement. 12 To enact effective systems-based approaches, it is recommended that programmes work closely with local people to develop solutions --- STRENGTHS AND LIMITATIONS OF THIS STUDY ⇒ The study design allows children and families to be at the centre of our understanding of what encourages and discourages them to be active. ⇒ By conducting citizen science as part of a reactive process evaluation, improvements to the research and the implementation can be made in real time, centred around those who matter most. ⇒ The data collection methods are designed to facilitate a positive participant experience. ⇒ The study has a small sample size, which will likely make it more difficult to capture a diverse range of experiences. 2 Frazer M, et al. BMJ Open 2023;13:e069334. doi:10.1136/bmjopen-2022-069334 Open access tailored to intended recipients' context and experience. [13][14][15] Recently, Sport England (the arms-length body of government responsible for growing and developing grassroots sport and getting more people active across England) has invested £100 million across 12 Local Delivery Pilots. 12 The purpose of each pilot is to design and implement a whole-systems physical activity approach, providing a unique opportunity for evaluation. --- Evaluations of whole-systems physical activity interventions There is a growing body of evidence surrounding wholesystems evaluations 14 16 17 that suggests mechanisms underpinning complex and whole-systems interventions are likely more varied and dynamic than singular or less complex interventions. 18 As physical activity interventions become more complex, it is increasingly important to explore what works, where, for whom and in what contexts. 19 This is essential to understand the transferability, replicability and upscaling of interventions and to inform policy change. 20 Additionally, timely and integrated evaluation can inform dynamic systems change through continuous improvement of the intervention design and implementation. 14 Literature reviews of evaluations of system approaches to health recommend several approaches and methods: the embedded researcher approach, qualitative inquiry (process evaluation) through a systems thinking lens, systems mapping, network mapping, ripple effect mapping and dynamic systems modelling. 14 17 21-23 Such methods are applied in evaluations of whole-systems approaches. 14 17 19 24 However, to our knowledge, there are no existing guidelines, protocols or evaluation studies reporting on evaluating whole-systems approaches focused on children and families. Given the increasing adoption of whole-systems approaches to physical activity and/or other health behaviours, there is a need to build further evidence around appropriate, effective and innovative methods for evaluating systems-based interventions, 21 22 including those involving children and families. --- Using citizen science to evaluate whole-systems approaches to physical activity The United Nations asserts that children have the right to contribute to decisions that impact them personally and affect the services they use. 25 Therefore, it is essential that children and their families are integral stakeholders within the evaluation of whole-systems physical activity approaches. Moreover, including local people promotes a more comprehensive and contextual understanding of what works and for whom. 14 At present, previous evaluations of whole-systems physical activity approaches have not placed children and families at the centre. One way to address this is through involving the public through a citizen science research approach, which could improve research quality and lead to system changes. 26 By placing children and families at the heart of research, 27 28 their needs can be better understood, and programmes adapted accordingly. A growing cross-disciplinary body of evidence demonstrates the benefits of taking different citizen science approaches with young people. [29][30][31][32][33][34][35] Citizen science has been used successfully to understand young people's physical activity experiences. 36 However, the potential to understand whole-systems physical activity approaches using citizen science has not been realised. 22 A key principle of citizen science is that citizen scientists should benefit from participating. 37 Research indicates that positive experiences for young people can be achieved by considering power dynamics, relationships and personal growth within citizen science. 29 32 38-40 Furthermore, it is recommended that citizen science projects evaluate participant experience to understand the value of young people's contribution and to improve outcomes. 41 42 The purpose of this paper is to describe a citizen science evaluation approach of the Join Us: Move, Play (JU:MP) whole-systems physical activity intervention with children and families. A secondary purpose is to outline the evaluation of participant experience within the citizen science process. --- METHODS AND ANALYSIS Aims and objectives This paper describes a protocol for a citizen science research study, aiming to understand the mechanisms through which a whole-systems approach to physical activity (JU:MP) influences behaviour change among families and to evaluate participant experience within this citizen science project. The specific objectives are: 1. To understand perspectives and lived experiences around the physical activity of children and families in JU:MP delivery areas. 2. To assess the feasibility, fidelity and acceptability of JU:MP among children and parents/carers. 3. To examine the mechanisms of change that underpin the physical activity behaviour of children and families, when, how and why this happens within JU:MP. 4. To contribute to dynamic systems change through informing programme refinement based on ongoing findings from objectives 1-3. 5. To formatively understand children and families' experience as participants within a contributory and collaborative citizen science approach, to inform continuous study delivery improvements. --- Study context During the pandemic, 73% of Bradford children (9-13 years) were not meeting physical activity guidelines. 4 On average, children of South Asian heritage and females were less active than their white British peers and males, respectively. 4 Within the Bradford district, the number of children overweight or obese is higher than the national average (37.9% vs 34.2%), with higher levels in the most deprived areas. 43 Specifically, within the JU:MP area, average income is significantly below the UK average. 44 Bradford is the youngest city within the UK, with 24% of residents under the age of 16 years. 43 Open 1). Further information can be found in Hall et al. 19 The overarching JU:MP evaluation The JU:MP evaluation employs a mixed-methods approach, which sits within the complementary philosophies of realist and 'systems thinking' methodology. 48 The concurrent mixed-methods approach contains two main elements: an effectiveness and a process evaluation (figure 1). The effectiveness evaluation includes: (1) a controlled trial focused on primary-age children, examining effectiveness at the neighbourhood level, and (2) a pre/post-evaluation of children within the Born in Bradford cohort study at age 7-11 years, 49 and again at age 13-15 years, examining effectiveness at the population (North Bradford) level. The primary outcome is children's moderate-vigorous intensity physical activity. 50 The process evaluation includes an examination of the mechanisms and contextual factors influencing the implementation and impact of JU:MP and includes a focus on policy and strategy, overarching work streams, the JU:MP neighbourhood approach, and children and families. A mixed-methods data collection approach includes semistructured interviews, observations, documentary analysis, surveys and participatory evaluation methods (eg, reflections and ripple effect mapping). For further information on the overarching process evaluation, see Hall et al. 19 This paper describes two citizen science evaluation studies that are part of the overarching process evaluation: (1) an interview and focus group study with primary-age children and their families; and (2) a year-long collaborative study with secondary-age children and their families. Patient and public involvement Public involvement through the citizen science methodology is integral to this study, as described in the Methods section of this protocol. Wider public involvement with youth research ambassadors from Born in Bradford 50 shaped the overarching study design, including, for example, incentives, methods and realistic time commitments. Citizen science approach Two interlinked longitudinal citizen science studies will help understand child and family experiences of the JU:MP programme. These will be complemented by an evaluation of the citizen scientists' experiences. Citizen science is a transdisciplinary participatory method. 51 While there is no agreed definition, [52][53][54] for this paper, we define citizen science as the involvement of members of the public who work with professional scientists to advance research. 55 Citizen science projects can be viewed on a continuum. On one end, citizens are 'passive contributors' to activities 56 ; on the other, citizen scientists are fully immersed in a local community, and the research is a joint enterprise to help identify and solve societal issues. 56 Using Shirk et al's 57 typology, study one adopts a contributory model approach, where projects are designed by researchers and members of the public primarily contribute data. Study two adopts a collaborative model approach, where researcher staff create the project and 'members of the public contribute data and help to refine project design, analyse data, and/or disseminate findings'. 57 Guidance exists on conducting high-quality citizen science research, 37 including young people in research 58 and co-production in a Bradford context. 59 The following seven principles, adapted from the above documents, will guide the current citizen science approach: 1. Child-friendly involvement, including clear communication and feedback. A longitudinal research design will provide an understanding of families' direct experience with JU:MP and how this evolves. 60 61 The longitudinal nature will facilitate the development of a meaningful relationship between the child, families and the researchers, 28 29 Open access provide time to explore change mechanisms and take seasonal variations in children's physical activity levels and sedentary time into account. 62 --- Study design Herein, we describe the design of the two studies that make up the citizen science evaluation, including contributory citizen science (study one) and collaborative citizen science (study two) (see figure 2). The two studies have been designed in a way that the level of citizen science participation required is age appropriate. [63][64][65] The contributory citizen science study will accommodate the views of younger children and Open access their families through focus groups and interviews. 64 For the collaborative citizen science study (ages 12-14 years), participants choose the study method, which may involve independent data collection in different neighbourhood locations and/or independent use of technology. These methods may not be suitable for primary-age children due to parental concerns of personal access to smartphones. 66 67 Ongoing findings from both studies will be added to the agenda for the six weekly research and implementation meetings, where they will be discussed, and actionable outcomes created to inform the JU:MP programme development and delivery. Actions are added to future meeting agendas and progress is recorded. Ethics approval was granted by the Chair of Humanities, Social and Health Sciences Research Ethics Panel at the University of Bradford for both studies (June 2022). For study two, given the collaborative citizen science approach, ethics approval covers participant on boarding, the study in principle and the first workshop. Ethical amendments will be submitted at (at least) two further points: (1) once the data collection method has been decided on and (2) once the data analysis approach has been finalised (further details in the Data analysis section). Equity of access has been considered in both studies. In addition to the information mentioned in the study design, any reasonable accommodation will be made to include eligible children who wish to take part. This will include following schools' instructions on how to accommodate learning differences, as well as ensuring physical accessibility for children with disabilities. If language is a barrier to participation, suitable accommodations will be made, for example, the provision of study information in the relevant language or a translator. If further specific barriers to accessing the research arise, current best practice will be followed to ensure inclusion. Study one: contributory citizen science with primary-age children and their families Study one uses two data collection methods: focus groups (separate child and parent focus groups) and parent-child dyad interviews. Focus groups allow for a diverse range of responses and provide children with less intimidating environments than interviews. 64 The parent-child interviews-which pair a child with their primary caregiverallow for more detailed and longitudinal exploration of people's experiences and engagement with JU:MP, and physical activity behaviour change mechanisms. Parentchild dyad interviews will aid understanding of how parents shape children's behaviour as well as allowing parents to expand on the child's verbal expression. 68 69 The study draws on a range of concepts relevant to intervention evaluation that the focus group and interview topic guides were informed by 48 --- (see table 1). Study one: sampling, recruitment and incentives Focus group and interview participants will be recruited from the three neighbourhoods included in the JU:MP control trial (see The overarching JU:MP evaluation section) to permit integration of findings across evaluation components. Each family will receive a £20 voucher per interview as a token of appreciation for their time. Focus group recruitment: parents and children will be recruited from the sample who provided consent --- Open access and assent to engage in the JU:MP control trial when in primary years 1-3 (aged 5-8 years). The sample for the focus groups will be recruited when the children are in years 2-4 (aged 6-9 years). Schools will be selected from different areas to ensure a geographical spread of participants. Parent focus groups will typically take place in different schools to child focus groups to enhance the diversity of responses. Children and parent participants will initially be randomly selected but revised based on advice from teaching staff (eg, if the family has since left school, or if the sample lacks diversity in socioeconomic backgrounds, ethnicity or physical activity behaviours). Different participants will be selected at different data collection time points to allow a range of families to share their experiences. Two weeks before the child focus group, parents will receive a letter or email from their child's school to notify them and provide an opportunity to withdraw consent. Verbal consent (parent group) and assent (child focus group) will be recorded at the start of each focus group. Parent-dyad interviews: the eligibility criteria are as follows: (1) those who live in the JU:MP control trial neighbourhoods and (2) including a child in primary years 2, 3 or 4. Participants will be recruited through local community networks and social media. A random sample will be selected from those who express interest in participating and have suitable availability. Informed verbal consent will be obtained from adult participants, and assent from child participants. --- Study one: data collection methods Interview data collection will take place approximately 9, 21 and 27 months after the JU:MP acceleratorphase programme launch (September/October 2022, September/October 2023 and March/April 2024). Focus group data will be collected at the first two time points. Multiple data collection time points enable findings to provide repeated feedback on programme delivery to enhance the likelihood of engagement with and impact of JU:MP. Participants' basic demographics (postcode district/name of neighbourhood; gender; age; ethnic group) will be collected during the interviews and focus groups to describe the sample characteristics relative to the population. Focus groups: six focus groups with children and three focus groups with parents will be held in schools. Two researchers will be present at each focus group: one to facilitate the session and one to take reflexive field notes. The children's focus groups will incorporate the Write, Draw, Show & Tell 70 technique to explore children's understanding of physical activity. This participatory visual method allows children to express their views, thoughts and emotions non-verbally and/or verbally, facilitating inclusivity and engagement. 70 Images depicting various ► What has made it easy/hard to engage with JU:MP ► What would make it easier to engage with JU:MP Participant fidelity [89][90][91] The extent to which participants understand the concepts and purpose of the intervention and are exposed to and engage with the intervention. ► Exposure participants have to different elements of JU:MP ► Receipt of knowledge of physical activity and its benefits; and knowledge and understanding of the JU:MP intervention ► Responsiveness-the extent to which participants feel the various components of JU:MP are useful ► Engagement-the components they report seeing/ hearing about and/or engaging with/or taking part in Acceptability 92 Anticipated or experienced cognitive and emotional responses to the intervention. ► Affective attitude (anticipated or experienced thoughts and feelings about JU:MP) ► Burden (the anticipated or experienced amount of effort required to engage with JU:MP) ► Ethicality (the extent to which JU:MP fits within their value system) ► Self-efficacy (participant's confidence that they can perform the behaviour required to participate in JU:MP) ► Opportunity costs (anticipated or experienced benefits or values that are given up to engage with JU:MP) Mechanisms of change 93 How does the intervention produce change within the delivery context? Open access components of JU:MP will also facilitate discussions (see table 1 for an overview of focus group discussion topics). Parent-child dyad interviews: nine parent-child dyads (three from each neighbourhood) will be interviewed at each time point. Photo elicitation methods will be used to stimulate discussion. Before each interview, families will be asked to take photos showing their physical activity as part of a normal week and images depicting various components of JU:MP will be shown in interviews. Both sets of images will be used to facilitate discussions around child and family physical activity behaviours. Interview questions will focus on the parent and child's understanding of physical activity, their (change in) physical activity behaviours, why they may or may not have engaged with the JU:MP programme and what impact this has had (table 1). Study one: data analysis Data analysis will be undertaken using a framework approach. 71 Interviews and focus groups will be audiorecorded and transcribed verbatim. Once imported into NVivo (QSR International, Melbourne, Australia), data will be coded into a framework previously developed to analyse wider JU:MP process evaluation data. This will facilitate the integration of data and findings with the broader process evaluation. Further detail as to how the framework was developed and the rationale for this approach can be found in Hall et al. 19 A recurrent crosssectional analysis will be applied for the focus group data to explore differences across the three different focus group cohorts. 51 For interview data, a trajectory analysis will be used to examine change over time within the parent-child dyads participating in the study. --- Study two: collaborative citizen science with secondary school-aged children and families Study two is a collaborative approach-with data collection developed in partnership with the citizen scientists. The longitudinal study will take place over a year (September 2022-September 2023) and focus on the citizen scientists and their families' experiences of physical activity and the JU:MP intervention. --- Study two sampling, recruitment and incentives We aim to recruit six female citizen scientists, aged 12-14 years, and their families. We are targeting females due to females being consistently less active than males 1 and our public involvement work indicating that families, particularly those from South Asian backgrounds, may be more accepting of a single-sex research project. The study will be advertised as female only; when the children and guardians give consent, this will be taken as gender selfidentification as female. Participants will be selected to ensure a diverse sample according to family composition, ethnicity, geographical location and previous interaction with JU:MP. Three families will be selected from one pioneer neighbourhood (60% Pakistani ethnicity) and three from an accelerator neighbourhood (75% white British ethnicity), enabling exploration of families' experiences at different stages of the JU:MP delivery process. The household earnings in both areas are below the national average, 44 and the researchers have taken steps to ensure socioeconomic status should not be a barrier to recruitment. Families will be approached through JU:MP Community Engagement Managers and other partners who work directly with the communities, to facilitate trust. 30 72 Informed consent from the parents and assent/consent from the children will be obtained before data collection commences and at key data collection points as the project evolves. The study two incentive package was developed in partnership with the youth research ambassadors from Born in Bradford prior to the commencement of the study. The incentives (to the total value of £400 per family) given throughout the study include family vouchers, child vouchers, money donated to the child's charity of choice and team-building activities. Due to the small sample size if the citizen scientists withdraw from the study, we will continue to recruit up to halfway through the study. Amended information and consent forms will be used to recruit once the study has taken shape. If citizen scientists are unable to make a workshop, any progress made will be communicated to them by the facilitator at a time convenient to the citizen scientist. If the citizen scientists do not return data at agreed time point, prompts will be sent to encourage submission. --- Study two: data collection methods Over the longitudinal study, the citizen scientists will be expected to collect data every fortnight on personal and family experience of JU:MP and physical activity. Depending on the data collection method selected, the data could be entered securely online or physically brought to the workshop. The citizen scientists will attend training workshops on how to conduct ethical research, plan and carry out data collection and analysis. Families will be asked to contribute to the data collection and, if the citizen scientists see it as appropriate, comment on the data analysis. There will be six group workshops in addition to regular contact between the researcher and citizen scientists across the year (see table 2). The first two workshops will be facilitated by a researcher, and subsequent workshops may be co-led with citizen scientists as the project develops. The first workshop will be held in a location mid-way between the recruitment localities. Citizen scientists will be asked if this is a suitable location for future workshops. Workshops one and two will focus on training and project development. Key decisions will focus on: finalising the research question, selecting the data collection method(s), ethical issues, how the citizen scientists want to transfer data, data analysis and dissemination. The citizen scientist will have the opportunity to use Open access different methods, surveys, interviewing, photovoice and journaling within the workshop to inform their chosen data collection method. In later workshops, if appropriate, families will be brought into the workshops to see the data analysis. The workshops have been designed to be both accessible and engaging for children. 73 Optional study Citizen scientists will have the option to design and conduct a wider research study to understand physical activity experiences among their peers (of all/any gender). There is potential for the citizen scientists to gain breadth of data and unique insights, given evidence that young people can be more open and willing to share experiences with peer researchers than professionals. 74 This optional study will be introduced in workshop three, and if the citizen scientists want to take it forward, they will guide the study's scope, reach and audience. Through this, the citizen scientists will learn further skills on how to plan and deliver a research project from the start, including first-hand experience of the academic ethics process. Study two: data analysis Citizen scientists will be introduced to different analytical approaches appropriate to the data collection method(s) selected, and will be supported to decide on an analysis method based on the options presented and their own ideas, and to undertake analysis of the data. Given the onerous nature of traditional data analysis approaches, such as thematic analysis, 75 76 citizen scientist and their families' analysis is likely to take an adapted approach, such as producing stories or case studies from the data. We anticipate that citizen scientists will be involved in analysing data collected in the period in-between workshops, from workshop three onwards, taking a crosssectional approach. Alongside the collaboratively chosen cross-sectional data analysis, data will also be analysed using a trajectory approach; this approach has been decided in advance by the researchers to take full advantage of the longitudinal data. It is adapted from the idea of rivers of multilingual reading. 77 The citizen scientists will choose which data are to be included and how. At each workshop, selected data will be placed along the 'river' and the families will note links or changes over time. This process of displaying the snapshots from each wave together will allow for identifying critical moments. 78 --- Overarching participant experience evaluation The research team will evaluate the process and impact of the citizen science approaches on participant experience across both studies. 79 The guidelines adopted in this research intended to promote a positive participant experience, outlined in the Patient and public involvement section, 37 58 59 and inform the evaluation. Three data collection methods will be used: a body sort exercise, an individual reflection card and researcher observations. Any adaptations to the citizen science process suggested by participants and/or researchers, and agreed upon by the participants, will be implemented on an ongoing basis. --- Open access The body sort exercise 73 77 80 will take the form of a workshop activity with the citizen scientists. Cards will prompt key participant experience elements (eg, power relations, inclusivity) in an age-appropriate format. Participants will be able to add further cards detailing other aspects of their experience. Participants will place cards representing their experience on the body outline, and engage in discussion around this. Within study one (the Study design section), the body sort exercise will occur at the end of three of the six children's focus groups, and parent-child dyad participants will be asked to attend a focus group to discuss their interview experience, at each time point. Within study two (see the Study one: contributory citizen science with primary-age children and their families section), participant experience will be evaluated at the end of each workshop and will encompass citizen scientists' experience since the last workshop. Citizen scientists will also have the option to complete an individual anonymised reflection card in case they do not want to voice their opinion in front of the group. A secondary researcher will collect participant experience data to mitigate social desirability bias. 81 Researcher observations, which allow an independent record of events and behaviours to be captured in real time, 19 will be conducted to inform evaluation of participant experience. Researchers will observe focus groups (study one) and workshops (study two). Observations will not occur within the parent-child dyad interviews (study one) to avoid creating a power imbalance between the researchers and the participants. The lead researcher will complete a reflexive research journal, focused on participant experience and improving our research to create a better participant experience. 82 --- ETHICS AND DISSEMINATION The current study adopts and advocates for a bespoke ethical approach for collaborative citizen science projects. Training for the participants, alongside a flexible, responsive approach to changes made as the project develops, ensures the projects meet high ethical standards, 82 for example, if tablets are to be used in study two, data collection training will be provided on data management for the citizen scientists. Ownership of the research is an important ethical concept. 30 Where information is to be disseminated, work will be credited to the citizen scientists while ensuring the participants' and their family's views on anonymity are respected. The collaborative citizen scientists are of an age where evidence suggests they can carry out a research project and express their expert knowledge. 29 82-84 However, as researchers under the age of 16 years, their consent alone is not legally adequate, and parent or guardian consent must be provided prior to research participation. Given the status granted to the citizen scientists, it seems incongruous not to allow them to provide their consent to take part in the project. 80 As a result, to meet institutional ethical standards, both the children (citizen scientists) and their families will be required to give informed consent before any child's participation in the research. If any safeguarding concerns are raised as part of the research project, the university's safeguarding procedures will be followed. A key element of citizen science is acknowledging the voluntary contributions to research by citizen scientists, with debates on how this should be achieved. 37 85 Within both studies, incentives are used to compensate participants for their time. In line with European Citizen Science Association's characteristics of citizen science, incentives differ according to the project context and type. 86 One of the key characteristics of citizen science is that it is a voluntary undertaking, and therefore there is a fine line between incentives and payment, which has been carefully considered. 86 There is an emerging call for diversity in citizen science projects, with socioeconomic status being a known barrier to participation. 87 To reduce the participants' economic situation as a participation barrier, travel will be kept to a minimum, with research being conducted locally and any necessary travel costs reimbursed. Within study two, if technology is a barrier to a family participating, JU:MP will provide reasonable equipment (eg, a tablet) and reimburse reasonable data transfer costs if needed. The progress and findings of the study will be communicated to the citizen scientists and families in various ways, for example, animated videos, and citizen scientists in study two will contribute to wider dissemination of study findings. Results will be published in peer-reviewed journals and summaries will be provided to the participants, through schools or directly. Twitter Amanda Seims @dramandaseims --- Contributors This study is part of the evaluation package of the JU:MP wholesystems physical activity project in Bradford. SB and AD-S led the development of the overarching JU:MP research design in partnership with JH, DB and AS. The conception and design of the studies presented in this paper were led by AS (study one) and MF (study two). JH and AD-S provided equal senior author support for both studies, ensuring the alignment with the overarching process evaluation, with feedback from all authors. MF led the writing of the initial manuscript with significant input from AS, JH and AD-S. Subsequent drafts were commented on by all authors, and revisions were made by MF. All authors have approved the submission. --- Funding

9f30958b2329d46561044b8fb8ed9342981563aa

Cancer Survivors in Saint Lucia Deeply Value Social Support: Considerations for Cancer Control in Under-Resourced Communities

Understanding the views of cancer survivors on their experience is important for informing community-based interventions. We studied, for the first time, the views of cancer survivors residing in Saint Lucia on their overall care experience. We used interview data from a cohort of adult cancer survivors from Saint Lucia between 2019 and 2020. We performed a thematic analysis to derive themes from codes. Forty-four survivors provided responses to at least one of the three questions. The majority of survivors were black, female and diagnosed with breast cancer. Survivors were interviewed on average five years after diagnosis. Four common themes emerged; "Availability of support groups", "Importance of support from family and friends", "Access to finances" and "Health education and patient navigation". Travel overseas for health services was common among survivors. Survivors expressed emotional distress during travel due to isolation from family and local providers. This is typical among island populations and is distinct from existing patient frameworks. Survivors also suggested that networking amongst providers and interventions assisted families of cancer survivors. Although tertiary care services are limited, we showed that survivors deeply value and depend on their inter-personal relationships during care. Interventions aimed at strengthening the inter-personal environment of survivors are warranted.

Introduction Persons living with cancer in under-resourced and vulnerable populations are disproportionately affected by their disease and have less access-to-care compared to persons from high-income settings [1]. In small island developing states, the challenges encountered when accessing care are further amplified. The health care systems in these islands are fragile and are constantly threatened by natural disasters. Implementation of innovation therapeutics and diagnostic services are difficult due to inherently small populations and limited economic capacity [2]. --- of 11 Saint Lucia is a small island developing state in the Caribbean. In 2020, there were 449 new cases of cancer and 232 deaths for a Afro-Caribbean population of about 180,000 [3]. There are three public hospitals, one private hospital, and many health centers distributed across the island. Universal health care does not exist in Saint Lucia. However, residents have access to a national social security system, which subsidises some health care costs and private health care insurance policies [4]. Different cancer advocacy groups operate on the island including "Faces of Cancer Saint Lucia". Faces of Cancer Saint Lucia started in 2009 in order to assist patients going through their cancer journey. Faces of Cancer Saint Lucia has a membership of over 215 persons including volunteers from rural communities. All services and social events offered to survivors of the group are free of charge. Services include education, health fairs, emotional and spiritual support, and chemotherapy and post-surgical support [5]. Faces of Cancer Saint Lucia is currently developing activities beyond cancer advocacy towards involvement in patient navigation. Having an in-depth comprehension of patients' experiences during the delivery of cancer care is of growing value as it improves understanding of patient expectations, and therefore informs community interventions to accompany cancer survivors throughout their journey aiming for better survivorship [6]. We have knowledge of cancer care experience from pacific islanders [7] and other populations from small islands and under-resourced populations [8][9][10]. Survivors from these populations have expressed financial barriers to care, difficulties navigating the health system, and travelling long distances for care due to geographic isolation. These survivors rely heavily on assistance and encouragement from family, and members from the community and faith-based organizations as a means of psycho-social support. Patient navigation programs are also highly valued by these survivors, and have been used to improve equity with counterparts from high-resource settings [6,7]. The under-resourced populations from the Asian/pacific region and Africa for which data is available live either in large countries with developing economies or live on small islands governed by a developed country. However, unlike these populations, Caribbean populations are mostly small island developing states. This status often leads cancer survivors to travel overseas for care in the hope of accessing better services [11]. However, this practice could be counterproductive as it exposes survivors to isolation, which can worsen health outcomes [12,13]. Considering the socio-cultural differences, varying levels of access-to-care, and health seeking behaviors between regions (Asian/pacific, Caribbean and Africa), patient perceptions may not be the same in the Caribbean. Data on this in the Caribbean are scarce. A previous study quantitatively assessed the overall care experience [11]. The only qualitative study on perception of cancer health services was from a health care provider perspective of breast and cervical cancer patients [8]. We sought to describe for the first time the views of cancer survivors residing in Saint Lucia on their overall care experience using a qualitative method. --- Materials and Methods The present study is a secondary analysis drawing data from a community-based study referred to as "the DCAP study"(Description of the Cancer Health Services: Diagnosis and Treatment Pathways). The protocol for this study has been fully described elsewhere [11]. --- Patient Recruitment The DCAP is a cohort of cancer survivors between May 2019 and August 2020. Eligible patients were greater than 18 years of age, able to communicate in English or Creole (without cognitive impairment), with an invasive cancer diagnosis (any cancer site, histology, and year of diagnosis), and having accessed health services in Saint Lucia due to cancer. Participation included authorization to access a patient's data from medical records in health care institutions and centres. Sources for subject recruitment were Faces of Cancer Saint Lucia (FOCS), Victoria Hospital, the Oncology centre, and key informants. Patients at health care establishments were recruited during opportunistic cancer navigation assistance by a FOCS representative. Key informants were recruited using purposive sampling. We aimed to constitute a sample that would reflect the cancer survivors in Saint Lucia by sex, cancer site and district of residence. When possible, we recruited key informants during cancer advocacy activities organized by FOCS. Snowball sampling was used during interviews to identify prospective participants [14,15]. We screened data sources for potentially eligible participants and then invited as many patients as possible. Next-of-kin were interviewed where the index patient was deceased, or not physically able to undergo an interview. The DCAP study was granted ethics approval by the ethics committee from the Medical and Dental Council (Saint Lucia, WI). All participants provided written informed consent prior to the study-required interview. --- Data Collection and Questionnaire Eligible participants were interviewed face-to-face by trained field investigators using a standardized questionnaire. The content of this questionnaire has been fully described elsewhere [11]. Participants were asked to have on-hand their test reports and personal clinical documents, to use as memory-aids during interviews. The questionnaire was developed to ascertain sociodemographic variables such as education level, private medical insurance, hot water at home, employment and clinical characteristics, such as cancer stage at diagnosis, and comorbidities. Participants' personal appraisal of their experiences for major events was ascertained throughout the interview. Interviews took place at the Faces of Cancer office or at the participants place of residence. They lasted on average one hour and 24 min (standard deviation: 34 min). This current study was based on three open-ended questions ascertaining information on their overall care experience (clinical and nonclinical aspects). Cancer survivors were asked specifically "Was there anything in particular that made your experience easier?", "Was there anything in particular that made your experience harder?", and "Do you have any suggestions to help improve the experience for other people in similar circumstances?". Probing was not used for these questions during interviews. --- Variables and Definitions Education level refers to the highest level of education that was completed. Private health insurance refers to coverage at the moment of the interview regardless of the person who pays the policy. Hot water at home refers to the availability of hot running water through a heating system in their primary place of residence. Professional status refers to a form of paid employment at the moment of the interview. The variable was divided into two categories: still working and not working. Not working includes unemployment, volunteer work and retirement. Diagnosis abroad was defined as a medical test performed that required physical travel outside of Saint Lucia. Treatment abroad was defined as a therapeutic intervention administered outside of Saint Lucia. --- Data Analysis We extracted the responses for the three questions based on patient overall care experience. Two of our authors independently analyzed and coded the same sample of responses. Interview responses were blinded for the other variables (age, sex, cancer site etc.) to prevent them from influencing the research findings. After saturation was reached, a thematic analysis approach was used to categorize key codes into themes and subthemes. Thematic analysis is a rigorous, yet inductive, set of procedures designed to identify and examine themes from textual data in a way that is transparent and credible. This method draws from a broad range of several theoretical and methodological perspectives, but the aim is ultimately to present stories and experiences voiced by study participants as accurately and comprehensively as possible [16]. Guest et al. described basic steps in undertaking thematic analysis [16]; Familiarization with and organization of transcripts; Identification of possible themes; Review and analysis of themes to identify structures. Coders met at different intervals to discuss emerging themes until a general consensus was achieved. --- Results --- Characteristics of Cancer Survivors Of the 50 cancer survivors from the initial DCAP study, 44 provided responses for this current analysis. Table 1 shows the sociodemographic and clinical characteristics of those participants. The majority of survivors were black, female, and diagnosed with breast cancer. On average, survivors were 53 years at diagnosis and were interviewed about five years after (standard deviation: 5.3). Years of survivorship were heterogeneous. Most participants were interviewed between two and eight years after their diagnosis. A little over a quarter of participants were more recently diagnosed (<2 years). At diagnosis, 62% reported an early-stage cancer and 47% reported a history of medical conditions. The most frequent conditions reported were hypertension (32%) and diabetes (14%). The majority (73%) had finished their initial active treatment at the time of their interview. In terms of socioeconomic variables, at least half of these survivors had a spouse, a professional activity and hot water at home. Only 40% of survivors were covered by private health insurance. Twenty-eight percent had only primary school education. More than half of the survivors had cancer treatment done outside of Saint Lucia. The proportion of survivors travelling for diagnostic tests was slightly higher (66%). --- Thematic Analysis of Patient Experiences We analyzed the responses from the three open-ended questions for which participants provided a response. Based on the responses, saturation was achieved. We noted 39 responses for the question "Was there anything in particular that made your experience easier?", 37 for the question "Was there anything in particular that made your experience harder?", and 41 for the question "Do you have any suggestions to help improve the experience for other people in similar circumstances?". The length of responses were mostly one to three sentences. On one hand, family support was by far the most common code among the responses for the positive aspects of care, and represented about half of the survivors. On the other hand, responses for the negative aspects and suggestions were more heterogeneous. Fifteen themes emerged from the three open-ended questions (Figure 1). Table 2 shows key quotes from survivor responses contributing to the development of themes. Of the 44 interviews conducted, three were with caregivers/next-of-kins. Caregiver codes were similar to those from cancer survivors and did not contribute to any distinct themes (Supplementary Tables S1 andS2). We identified four themes that were common to the three questions: (1) Availability of support groups, (2) Importance of support from family and friends, (3) Access to finances, and (4) Health education and Patient navigation. Hereafter, we provide a detailed analysis of the content leading to the formation of these themes. common to the three questions: (1) Availability of support groups, (2) Importance of support from family and friends, (3) Access to finances, and (4) Health education and Patient navigation. Hereafter, we provide a detailed analysis of the content leading to the formation of these themes. Positive: "Was there anything in particular that made your experience easier?", Negative: "Was there anything in particular that made your experience harder?" and Suggestions: "Do you have any suggestions to help improve the experience for other people in similar circumstances?". HCP: Health care provider. --- Open-Ended Question Patient n° Quotes Was there anything in particular that made your experience easier? 1 Joining Faces of Cancer Saint Lucia. --- 2 The support of family and friends who provided housing spiritual and emotional support. 3 Yes, the almighty, I trusted him to give me the strength to endure. --- 4 Family support (My sister was always here), insurance (Money was not a problem), my employer supported me mentally and financially. 5 Treatment at Tapion hospital was excellent but costly. 6 Family support, natural medications. Positive: "Was there anything in particular that made your experience easier?", Negative: "Was there anything in particular that made your experience harder?" and Suggestions: "Do you have any suggestions to help improve the experience for other people in similar circumstances?". HCP: Health care provider. Table 2. Key quotes from participant responses contributing to the development of themes. --- Open-Ended Question Patient n • Quotes Was there anything in particular that made your experience easier? 1 Joining Faces of Cancer Saint Lucia. --- 2 The support of family and friends who provided housing, spiritual and emotional support. 3 Yes, the almighty, I trusted him to give me the strength to endure. 4 Family support (My sister was always here), insurance (Money was not a problem), my employer supported me mentally and financially. 5 Treatment at Tapion hospital was excellent but costly. 6 Family support, natural medications. Was there anything in particular that made your experience harder? --- Availability of Support Groups A total of 15 categories were identified to create this theme. Survivors expressed how support groups assisted them in getting information and in coping strategies with their illness, "Faces of cancer because of information they gave and hope". Relating to a more difficult experience, many survivors expressed their dissatisfaction with not having the knowledge of existing support groups, "Not having knowledge of who to contact for support". Survivors also gave advice to other cancer survivors relating to cancer groups. Many insisted that it is quite valuable throughout the journey to share your experiences with other survivors. "We need a cancer center to provide support and counselling to patients who are diagnosed with cancer. Increased support to Faces of Cancer to assist patients in care and treatment." --- Importance of Support from Family and Friends Support from family and friends is one of the most frequent themes in this study. Survivors who had an easier journey expressed their gratitude for having family members and close friends supporting them throughout the journey, "The only thing that made my experience easier is the fact that my sister accompanied me at every visit to the doctor and to the hospital". Survivors who travelled overseas for care spoke about the burden associated with being isolated from their family "I could not see my husband and children", "Having to leave my son in Saint Lucia made it a bit hard". --- Access to Finances Many survivors felt overwhelmed with the burden of finding the funds to pay for their treatment, laboratory tests, medication, etc. throughout their journey. Survivors showed their disappointment with the lack of enthusiasm from medical professionals to assist them when they were unable to make payments, "Having no finance to pay for treatment and the doctors would not see you if you have no money, they would rather you die". Some survivors emphasized the need to have medical insurance early enough in the case of being diagnosed with cancer. A common way of paying for treatment as expressed by survivors was by raising funds whether it be in the form of having fundraiser barbeques created by family members, close friends or even members in the community, " . . . Just if one doesn't have insurance one should start asking for money early so they can do the treatment without missing any treatment". On the other hand, one survivor described their experience as being easier since he/she "did not have to worry about finances". --- Health Education and Patient Navigation Survivors have shown profound interest in having a navigation system within cancer care. Survivors are burdened with having no knowledge on "what's next" after being diagnosed. They feel that inadequate information is provided by health care expertise after their diagnosis; "Lack of team structure to deal with issues together . . . ". Other survivors also expressed the need for health care professionals with the support from government to raise awareness, to educate the public, and to invest in cancer research. However, one survivor who had knowledge of the disease described having a more difficult experience, "Having the knowledge and being the patient is heart wrenching". --- Discussion This is the first study focusing on cancer care experiences from a patient perspective in the Caribbean. This study underscores the importance of family and social support for a positive cancer experience in Saint Lucia. Although the themes that emerged from our study were widely consistent with those from existing patient experience framework (patient preferences, emotional support, physical comfort, information and communication, continuity and transition, coordination of care, involvement of family and friends, and access-to-care) [17,18], we showed that survivors often have to travel overseas and leave their family in Saint Lucia to access care, and this impacted negatively on other aspects of the cancer experience. This finding is novel, and distinguishes our survivors from those in larger countries. We compared our themes with the few data from other small islands. Themes from the Caribbean islands of Dominica, Grenada, and Saint Vincent and the Grenadines were consistent with ours [8]. Our survivors had a deep appreciation for the support from family and friends, and for support groups like Faces of Cancer Saint Lucia. Interestingly, the indigenous populations from the Torres strait islands of Australia also appear to have similar cancer experiences to our survivors [7]. They both have similar experiences while they access care overseas (e.g., isolation from family, language barrier, and cultural differences). However, compared to these same islands, survivors from Saint Lucia had great enthusiasm for religion and faith, a factor which was uncommon in other small developing islands outside of the Caribbean [7]. Many survivors from our study looked towards higher spiritual powers, praying and having faith as a means of support or coping mechanism. The role of religion and spirituality has also been described in larger LMICs [10]. However, compared to developed countries, we believe that family support and faith appeared to be valued more among our survivors in Saint Lucia and other LMICs [19][20][21]. Access to finance was a recurring theme across the three open-ended questions. Cost of treatment and obligation to fundraise were mostly cited as sources of financial hardship. Financial hardship is well-known to be associated with the cancer experience in both highincome and low-income countries [22,23]. Qualitative studies on the financial hardship in LMICs and small islands are particularly scarce [23]. One study using a semi-structured interview was conducted in Iran [24]. Iranian survivors reported financial difficulties due to interference with their ability to work [24]. This was not observed in our study. We hypothesized a possible relationship between some themes. Survivors expressed concerns with lack of empathy from providers, trust in their expertise, and health education. Lack of empathy may explain the distrust in expertise and motives of providers [25]. Consequently, the patients-provider relationship is suboptimal and diminishes the quality of knowledge transfer and care [26,27]. In addition, many survivors also spoke about emotional distress. Travelling to more developed countries for treatment often resulted in leaving behind family. Knowing the emphasis placed on family support by our participants, there is likely a strong patientburden generated by travelling for care. This may contribute negatively to health outcomes of survivors from Saint Lucia. This link between social support and improved quality of life is well established [9,28,29]. A previous study on breast cancer patients showed that having social support mediates the choice of coping strategies toward positive reframing, which leads to better emotional well-being [28]. Social support is defined as a network of family, friends, neighbors, and community members that is available in times of need to give psychological, physical, and financial help [30]. Our findings add further understanding to what survivors in Saint Lucia view as important during their care. Patient satisfaction appears to be influenced more by interpersonal and provider factors rather than objective system measures. In a previous study, quantitative ratings of overall care experience showed 76% of these cancer survivors from Saint Lucia were satisfied (rated as "good/very good") [11], whereas the responses of our current analysis were heterogeneous, revealing both a strong role of family/friend support and also numerous difficulties. Indeed, our current analysis revealed notable dissatisfaction with the medical professionals' delivery of care, notably when conveying vital information and timely diagnosis. This incongruity between quantitative ratings and qualitative responses raises two potential explanations on the perception of the overall experience of cancer survivors in Saint Lucia. Firstly, we believe that the effect of psychosocial support may outweigh that of suboptimal health services in Saint Lucia. Secondly, health literacy is also a probable factor as we previously described [11]. Survivors may not view long delays or low-quality services as problematic due to lack of knowledge of best practices and standards in cancer care. There may be other factors that contribute to the perceptions of cancer survivors. This information is vital for tailoring interventions. Future work should particularly assess potential associations between the socioeconomic status and patient perceptions of care using a mixed methods approach [31]. This study had several strengths and limitations. Recall bias is likely since we ascertained information on patient experiences several years after their diagnosis. However, the effect of recall bias is unlikely to be alarming. The average delay was only five years, and our major themes corroborate with data from providers treating cancer patients from Saint Lucia [8]. Given the purposive sampling performed for this study, our results may not be an accurate representation of the views of all cancer survivors in Saint Lucia, a common weakness of qualitative studies. Some survivors were also recruited by Faces of Cancer Saint Lucia. Consequently, responses on support groups may have been overrepresented. In addition, most of the sample comprised women. Greater participation from women is a common occurrence in research studies [32]. However, we previously showed that our sample was indeed representative of the most common cancer sites by sex in Saint Lucia [11]. In addition, 44 participants spoke about the factors they perceived as important. This is a substantial sample size for a qualitative investigation, and is also comparable to other studies on this topic [7,9]. Furthermore, our study also adds new information to cancer care from a patient's and caregiver's perspective. The patient perspective gives a more holistic depiction of the difficulties encountered unlike studies from a provider perspective where comments on provider performance may be omitted [8]. In addition, our investigation included both quantitative and qualitative data. Small developing islands like Saint Lucia are not always equipped with the resources needed to adequately treat cancer patients. The qualitative data gathered from this study raises awareness of the importance of capturing patients' perspectives when receiving treatment. With our description of patients' experiences, the local government and patient associations have an opportunity to plan and implement more successful evidence-based patient-centered interventions focusing on reducing the patient-burden associated with social isolation, notably from separation from family. Although these patient experiences are from an island context, we showed that these findings are also relevant considerations for planning of cancer control in under-resourced and uninsured populations in more developed countries. --- Conclusions In light of our study, multi-disciplinary case-conferencing, patient education programs, and patient navigation could contribute to substantial improvement in the care experience and better survivorship among cancer survivors in Saint Lucia. These survivors depend --- Data Availability Statement: The datasets analyzed during the current study are available from the corresponding author on reasonable request. --- highly on support from family for a positive cancer experience. Travelling overseas for more comprehensive care often translated into separation from family and an additional burden on survivors. The above interventions can be implemented immediately awaiting the development of more tertiary cancer services on-island. We believe that support groups such as Faces of Cancer Saint Lucia have an important role in building scientific evidence to strengthen the advocacy for better cancer control in Saint Lucia. Small developing islands of the Caribbean and similar under-resourced populations with limited offerings in cancer health services may also benefit from these new findings. --- Supplementary Materials: The following supporting information can be downloaded at: https: //www.mdpi.com/article/10.3390/ijerph19116531/s1, Table S1: Characteristics of cancer patients who were represented by a caregiver during the study interview; Table S2 Informed Consent Statement: Informed consent was obtained from all subjects involved in the study. --- Conflicts of Interest: The authors declare no conflict of interest.

37520a68431634e0fd4b087486d80d8143288176

Strategizing and Fatalizing: Self and Other in the Trauma Narratives of Justice-Involved Women

Jail admissions in the United States number nearly 1 million women annually. Many have limited access to public support and must seek assistance from family, friends, and strangers to maintain health and safety after release. This study sought to learn more about how women with a history of interpersonal trauma and criminal justice involvement perceive and manage social relationships. In-depth, story-eliciting interviews were conducted over 12 months with 10 participants who were selected from the convenience sample of an ongoing parent study in a Midwestern urban jail. Embedded trauma narratives were analyzed for self-presentation, form, and theme. The trauma narratives registered a continuum of agency, anchored at either end by patterns of strategizing talk and fatalizing talk. Providers and advocates can improve support for justice-involved women post incarceration by becoming familiar with and responding to patterns of strategizing and fatalizing in their personal narratives.

understandings of how women manage health under the highly challenging conditions of reentry after incarceration. --- Women's Incarceration and Women's Health Jail admissions in the United States total over 11 million per year, with daily population censuses for jails numbering about 2 million (Minton & Zeng, 2015). Women make up approximately 15% of those totals, their rates increasing 18% between 2010 and 2014, whereas men's rates of jail incarceration decreased by 3.2% (Minton & Zeng, 2015). Much has been written about the distinctive pathways that lead women to incarceration, and it is well documented that rising rates are tied to trends in the policing, charging, and sentencing of drug and property crime in underresourced, often racially targeted communities (Alexander, 2010;Wacquant, 2010). Justice-involved women, including both those who are incarcerated and those under criminal justice supervision in the community, often come from and return to underresourced areas, where jobs and social capital to improve socioeconomic status are lacking (Sered & Norton-Hawk, 2014;Western & Pettit, 2010). In addition, incarcerated women struggle with substance abuse disorders, mental illness, and severe personal trauma at higher rates than women in the general population, including experiences of childhood sexual abuse (CSA), intimate partner abuse, and adult rape (Grella, Lovinger, & Warda, 2013;Lynch, Dehart, Belknap, & Green, 2012). In seeking to gain control over the cycle of incarceration, women with a history of incarceration face multiple barriers that affect their health and safety (Lorvick, Comfort, Krebs, & Kral, 2015;Swavola, Riley, & Subramaniam, 2016). --- Trauma and Trauma Narratives of Justice-Involved Women High rates of lifetime trauma from interpersonal violence afflict women with a history of incarceration (Grella et al., 2013). Reports of CSA and adult sexual violence are prevalent in incarcerated populations, with studies finding CSA rates for incarcerated women between 32% and 68%, and sexual violence as high as 86% (Briere, 1996;Cusack, Herring, & Steadman, 2013;DeHart, Lynch, Belknap, Dass-Brailsford, & Green, 2014). Women who experience traumatic life events often adopt coping strategies such as drug and alcohol abuse that lead to revictimization and additional health risks (Cusack et al., 2013). Symptoms from unresolved trauma responses can take a toll on physical health and are associated with dysregulation of stress responses and associated health outcomes, including musculoskeletal pain and digestive, endocrinal, cardiac-respiratory, and immunologic conditions (Pacella, Hruska, & Delahanty, 2013;Weiss, 2007). Trauma has special significance in a study that focuses on how women narrate relationships. In her landmark text Trauma and Recovery, Herman (1992) explained that trauma, a psychic injury or wounding, refers to the profound disruption in a survivor's understanding of self in relation to the world, a loss of perceived "control, connection, and meaning" (p. 33). Caruth (1996) has stressed that the key aspect of trauma is the difficulty with which survivors understand and make meaning of negative experience owing to the peculiar way trauma is recorded in memory, its tendency to be unanchored contextually-not part of the flow of recalled experience but separated and locked out. Survivors often can only incorporate the meaning of traumatic experience into their lives indirectly and belatedly. Janoff-Bulman (1992) has argued that trauma entails such a shattering of a person's basic assumptions about the self in its connection with others that it might require construction of a whole new selfnarrative or schema. The process of recovery from trauma can be an extended and uneven process marked by reexperiencing, avoidance, and dissociation (Bromberg, 2003;Janoff-Bulman, 2004), sequelae that interfere with a survivor's ability to make sense of, form, and manage relationships (Golin et al., 2016;Herman, 1992). As women with significant lifetime trauma might suffer retraumatization through unintended triggering of symptoms within the carceral setting, trauma-informed corrections has been a focus of research in recent decades (Harner & Burgess, 2011;Machtinger, Cuca, Khanna, Rose, & Kimberg, 2015). However, the attention to targeted, trauma-informed support during incarceration rarely extends beyond release for these women. Post incarceration, many receive only minimal social assistance and inadequate mental and physical health care (Belknap, Lynch, & DeHart, 2015;Mallik-Kane & Visher, 2008;Richie, 2001). To change how women are supported in the community after release, providers can begin by hearing what women are already doing, taking stock of the particular ways in which justice-involved women with a history of trauma perceive self and other in managing health and safety risk through informal social support. --- Feminist Standpoint and Relationality Feminist standpoint theory and its emphasis on relationality informed the overall objective of the study: to learn from justice-involved women's own accounts of trauma how they manage social ties for health and safety. Feminist standpoint theory holds that women share certain ways of viewing and understanding the world as a result of being socialized as women in a specific social structure at a specific historical juncture (Ramazanoglu & Holland, 2002). While subject to a good deal of variation and modification due to intersectionality (i.e., the synergistic role played by factors of socioeconomic status, race, and religion in forming women's experience), feminist standpoint theory argues that an emphasis on relationships represents a primary way in which women know and experience the world (Freedberg, 2015). Connectedness and transaction rather than autonomy and detachment thus become key motifs around which feminist epistemology (Haraway, 2014) and feminist approaches to philosophic and scientific inquiry take form (Gilligan, 1982;Harding, 2004;Miller, 1986;D. E. Smith, 1990). The relational aspect of feminist theory further supports a focus on stories about trauma, as trauma is often defined as the rupturing of connection or relationship (Comstock et al., 2008;Herman, 1992). --- Narrative Inquiry for Health Research Story-based or narrative research assumes that narrative is a basic means by which humans make sense of and communicate experience (Bruner, 1990;Polkinghorne, 1988). Often, narrative refers to the temporal ordering of a series of events or conditions by a speaking (or writing) subject (Mishler, 1995), whereas story refers to a more purposeful performance that might involve greater attention to scene-setting and evaluation of meaning than is found in the mere narration of events (Maynard-Moody & Musheno, 2009;Mishler, 1995). Notwithstanding distinctions made between story and narrative, the two are often used interchangeably in the social sciences to refer to segments of talk that form a plotted sequence, though it might not be chronologically ordered in the telling (Riessman, 2008). I use the terms narrative and story interchangeably in this article. Narrative inquiry has been developed for social science research by Clandinin and Connelly (2000), Gubrium and Holstein (2009), Hall (2011), Maynard-Moody and Musheno (2014), and Riessman (2008), who argued that personal narratives provide rich, detailed information about how people infuse experience with meaning and emotional valence, which in turn inform attitudes and behaviors (see also Sandelowski, 1991). The narrative analytical methods used in this study were specifically adapted from Riessman (2008), who demonstrated how narratives convey meaning through thematic, structural, and performative dimensions, as well as through intertextual connections-the way stories told in one context converse with stories told in another, as in the broad social narratives or stories that a culture tells itself about itself. Inquiry based on personal narratives has had special significance for the health sciences (Priest, 2000), where stories and storytelling are employed as a mode of intervention (Charon, 2006; M. J. Smith & Liehr, 2013) and as a method to build knowledge about the subjective experiences and needs of patient populations (Draucker & Martsolf, 2010;Polzer, Mancuso, & Rudman, 2014). For health researchers, storied data can render visible the emotional and perceptual patterns that organize the ways in which people manage health and safety risk in their worlds (Bally et al., 2014;Lee, Fawcett, & DeMarco, 2016). --- Accessing Support Through Social Connection This study focused on justice-involved women's stories about relationships to understand how they perceive self and other in mobilizing social support. According to social network theory, the webs or networks of social relationship that bind persons to one another in a community often serve as a conduit for social support (Berkman, Glass, Brissette, & Seeman, 2000). Social support might take form as emotional, material, instrumental, and informational resources exchanged across specific relationships (Cohen, 2004;Uchino, Bowen, Carlisle, & Birmingham, 2012). In low-resource situations, support from close network connections might be necessary for survival or "getting by" (Briggs, 1998, p. 178;Domínguez & Watkins, 2003). For a population, with limited resources, it is important to observe that social support operates according to a principle of reciprocity, the achievement or promise of some form of give and take (Uehara, 1990). The central tendency in the conceptual framework for this study-which includes feminist standpoint theory, narrative inquiry methodology, and social support theory-is relational. It is thus well suited to investigating what trauma stories of women with justice involvement have to say about how women perceive and manage social ties to access the social support they need to protect health and safety. --- Method Recruitment and Case Selection Women were invited to interview for this study from a larger, ongoing interventional and ethnographic study (Ramaswamy et al., 2017b). That parent study had two aims, the first being to assess changes in women's cervical cancer knowledge, attitudes, and self-efficacy to screen and seek treatment before and after a brief education and empowerment program delivered in the jails. The second aim of the parent study involved interviewing and observing a subsample of the women after release to learn more about how women navigate health care and social service barriers (Ramaswamy et al., 2017b). The convenience sample (n = 182) for the parent study included English-speaking women in three county jails in a Midwestern metropolitan area from September 2014 to March 2016 (Ramaswamy et al., 2017a(Ramaswamy et al., , 2017b)). The story-based, relationship-focused interview study reported here involved a purposeful selection of 10 cases from the parent study sample. Selection was based on the variety and complexity of the women's social networks and experiences of trauma as expressed in the interventional phase of the parent study. In determining which participants to invite, I evaluated women's discussion during the interactive group sessions, inviting participants who reported numerous, shifting, and overlapping roles and relationships in the most detail. Invitations for the story-based relationship interviews were issued on a rolling basis between December 2015 and July 2016. Recruitment of participants for the story interviews ended when I judged that the data were yielding sufficient complexity of form, richness of detail, and diversity of experience to answer the research question (Patton, 2015) about how women narratively represent the management of relationships to protect health and safety in stories of trauma. No one who was invited to participate in the interviews declined, and (unusual for work with this population) none of the participants was lost to follow-up during the 12 months of interviewing. --- Data Collection Procedures Two in-depth, semistructured interviews were conducted with each of the 10 women who agreed to participate. All interviews were audio recorded, transcribed verbatim, and stored in Dedoose (a password-protected online data management system) and on a secure server at the University of Kansas Medical Center. Interviews in both the initial and follow-up series averaged 60 minutes and ranged from 31 to 91 minutes. The average time between each woman's initial and follow-up interview was 5 months, with a minimum of 3 weeks and a maximum of 12 months. In the initial interview with each woman, a life-story trope was employed in which the participant was invited to imagine her life as a book, similar to what McAdams (2008) described, but with each chapter centering on one or more key relationships. The relationships could be with family, friends, intimates, or acquaintances. Participants were encouraged to order their chapters and the stories within them however they liked and were not held to the book format if they seemed resistant to it. After a woman narrated her last chapter, she was asked which (if any) of the chapters she would remove from the story and why, what she would make up and add in as a chapter, and what title she would give her overall story. In the follow-up interview with each woman, I presented a typed outline or a verbal description of the book's chapters and key contents for verification and invited additional storytelling prompted by that frame. All interviews were conducted in person, with the exception of one follow-up, which took place on Skype after the participant moved out of state. Most interviews occurred in the community, at sites that included participants' residences, the researcher's car, coffee shops, a public library, a church-choir changing room, and various McDonald's restaurants. Three interviews were recorded in a private meeting room in the jail. --- Data Analysis Procedures Each transcribed interview was reviewed and cleaned against the original recording before being loaded into Dedoose, where I open-coded transcriptions independently (Saldaña, 2016). Two members of the parent study analytic team, who also read the transcriptions, met with me biweekly throughout data collection to discuss themes based on field notes, coding, and analytical memos (Emerson, Fretz, & Shaw, 2011). Over the course of data collection and analysis-a yearlong, iterative process of reading, coding, memoing, and discussion of my interview data and field notes with colleagues-I discerned the presence and main attributes of a framework of strategizing and fatalizing talk in the management of relationships for social support. The unit of analysis in this study was two-part and included the overall life stories constructed by the women in interviews and field encounters and the embedded trauma stories. The larger life stories were constructed as described above from the chapters narrated by the women. Embedded trauma stories were extracted for analysis based on a trauma event series that had a discernible abstract or beginning (often instigated by an interview prompt) and an ending, in which, after recounting the shifts in action or condition, a participant gave some form of resolution and provided a "coda" (Labov & Waletzky, 1967, p. 39). The coda or ending was usually a sentence or two that brought the account into the present perspective. Embedded stories of trauma could extend a few lines or a few pages; some were peppered through with probing questions, whereas others issued forth as an unbroken flow of narration. The four trauma stories analyzed in this report were selected on the basis of their detail, complexity, and to a lesser extent their completeness of form. I selected stories that illuminated the characteristics of the two poles of strategizing and fatalizing to better define those modes of talk, though what was in fact more common was a combination of the two, an example of which I also present. For each case, I contextualize the trauma narrative(s) with detail from the participant's life story and include my interpretive analysis to clarify the reasoning by which I drew conclusions from the findings. --- Ethical Issues All participants gave informed, written consent to interview as part of the enrollment process in the parent study. Prior to each interview, I further reviewed the purpose, benefits, and possible risks of the substudy and obtained assent to continue participation and to audio record. To protect participants' autonomy, I reemphasized in each encounter that the women were under no obligation to continue with the parent study, the interview study, or any particular line of discussion within an interview. I stressed that the project would probably not benefit the participants in any direct way but I also let them know that their contributions might help care providers and program designers improve conditions for women in like positions by designing better services. I warned women that our discussions could cause unwanted memories or emotions, and I reminded them that the parent study team could give referrals for mental health with experienced providers affiliated with the project if requested. During informed consent, the women were apprised of our obligation to report child abuse or endangerment, and I remained alert to any such disclosures during all encounters. Participants in this study were initially encountered during an incarceration, and most continued to be subject to criminal justice supervision, several returning to jail during the course of the study. As such, they were deemed vulnerable and merited special protections as human subjects. Amplifying their potential for harm and exploitation was the continuing involvement of many of the women in drug use, drug sales, and prostitution-illegal activities that participants discussed freely in the interviews. A National Institutes of Health Certificate of Confidentiality was obtained to protect recordings and other materials in this research from seizure or discovery by law enforcement. Data were stored in passwordprotected computers and on a secure university server. Initials and pseudonyms were used to identify the women in notes and transcriptions. All the names that appear in this report are pseudonyms, most of them chosen by the women themselves. Women were remunerated US$10 for each interview. The amounts were applied to debit cards held by the women as part of their ongoing participation in the larger investigation. The substudy was approved through the parent study by the institutional review board at the sponsoring university medical center. The programs administrator at the jail where three of the interviews took place additionally approved the audio-recording of interviews. --- Findings The objective of this study was to achieve depth and detail of data in specifically selected cases rather than representativeness or probabilistic generalizability (Miles & Huberman, 1994;Patton, 2015). Even so, demographic information in a qualitative study can provide a snapshot of a group of cases and give some idea where diversity of experience was achieved or lacking in case selection (Sandelowski, 2001). The supplemental file provides a summary of characteristics of the 10 participants in the interview group and some indication of trauma exposure as revealed during interviews. Of particular note, various combinations of interpersonal violence, drug abuse, sex exchange, and insecure housing put these women at elevated risk of infectious and chronic disease and injury (Kelly, Cheng, Spencer-Carver, & Ramaswamy, 2014). Four women reported exchanging sex for food, shelter, money, or drugs either regularly or intermittently during the 12 months, and two others had done so in the past. All the women reported a history of substance abuse, and, in either their initial or follow-up interviews, all but two of the women acknowledged continuing drug use during the period of the study-including the two incarcerated women, who described using while in jail. One of the most pressing risks related to health and safety in the women's day-to-day lives and the one to which women most often attributed shifts in relationships was the threat of injury or death due to violence. Most women reported multiple interpersonal traumas. Six women described being raped as adults, often multiple times. Seven were beaten by boyfriends, husbands, or johns severely enough to require hospitalization. Three described abductions by abusive partners that involved being held captive for a period of time. Two reported having been hospitalized with gunshot wounds. Three of the women described the death or life-threatening injury of an infant in the home. Indeed, the women's stories at times gave an impression of constant crisis, yet within the narration of trauma was also evidence that the women labored to shape meaning in ways intended to facilitate support or minimize harm. --- Strategizing Talk and Fatalizing Talk in Narratives of Trauma The initial interviewing and analysis of data in this study was guided by the broad question, "What do trauma narratives of recently incarcerated women reveal about how they perceive and manage social ties to access support for health and safety?" The trauma stories displayed in the list titled "Trauma Narratives" (Supplemental file) and explicated below represented comparatively extreme moments of health and safety risk in the women's lives. Janoff-Bulman (1992) has argued that research based on extreme events might provide particular insight into "basic aspects of human thought and behavior" (p. 3). The trauma narratives analyzed herein indicated that justice-involved women in volatile environments with compromised access to resources perceived relationships of support and their own capacity to engage them along a continuum extending from greater (strategizing) to lesser (fatalizing) ascriptions of agency. --- Strategizing talk In strategizing talk, women emphasized agency and an implied self-efficacy, sharing in some form the goals, plans, and actions that made up a process of mobilizing social support. Natalie-Natalie's criminal justice history included a 4-year stay in prison and more than 10 short-term jail stays, mostly for drug-related offenses. Chapters in Natalie's life story described relationships with her mother, the fathers of her children, two same-sex partners in prison, and the man she married during the year of this study. Key events in Natalie's life story included rape by an acquaintance at age 14, the birth of her children, the loss of her parental rights, and the sudden death of her mother. Natalie identified herself as an alcoholic and reported abusing methamphetamine and prescription opioids. Natalie's overall life story was shaped by her almost constant maneuvering to secure sanctuary, both physical and emotional, for herself and formerly for her children. The embedded trauma stories within Natalie's life story exemplified the use of strategizing talk. In her first chapter, Natalie described leaving her mother's home at age 15 to live with a teenage boyfriend, Darren, aged 14, in his mother's house. Natalie spent nearly 7 years and had two daughters with this partner in a relationship characterized by severe physical and emotional violence. The extended, disjointed account of her first opposite-sex relationship included allusions to being punched, kicked downstairs, and raped. However, despite the recitation of chronic, severe abuse, in the story labeled "I Finally Did It," Natalie first narrated a predicament over which she perceived she had little control and then, despite that lack of control, followed with strategizing talk: variously establishing intent, assessing options, making plans, and taking action. Structurally, Natalie set two plots in motion in "I Finally Did It," an elaborately planned scheme that involved a secret job and savings but required time to bring to fruition, and a second, the fight, enacted on the fly, its results put to immediate use. The movement of the narrative from one to the other highlighted Natalie's tactical aptitude as she pivoted abruptly from describing the first approach (i.e., getting a secret job, saving money) to seize on and develop the circumstances surrounding the second (i.e., staging a disclosure). In the second gambit, she transformed the "something stupid" of a minor fight with Darren's mother into a narrative of imminent danger. Strategizing was made even more apparent in the final lines of "I Finally Did It," when Natalie pointed to her reasonable assumption that, even though her mother had not responded to previous requests for sanctuary, appealing to fear of HIV and the safety of her granddaughters would prove more successful. Natalie's strategizing talk took form in "I Finally Did It" through her presentation of self, which focused on the depiction of a woman isolated and yet continually plotting to rebuild connections. Her emphasis was on strategizing-with little help and much hindrance from others-to manage relationships in a way that would secure her own and her children's safety. Similar to other trauma stories that featured strategizing talk, in Natalie's second trauma story, "[M]aybe Now I Could do a Little Bit More," the presentation of a self in isolation, lacking either formal or informal social supports, was parlayed paradoxically into a hardbought agency. The entire first passage of the second narrative was dominated by expressions of helplessness and bewilderment, exemplified by her anguished wondering: "Where's my support group? . . . What the hell is going on?" In Natalie's storytelling, alienation did not lead her to submit to circumstance but to reassert agency: though utterly alone, she was "working on this"; once the children are in the care of family members, she would be able to "do a little bit more" to achieve time with her kids; and, in narrating what occurred after the sexual molestation of her daughters by their cousin, she underscoredwith a single, important "[b]ecause"-that it was her own rage that impelled her brother finally to step-up. Although not always successful and certainly filled with heartache, frustration, and sometimes recklessness, Natalie's narrative constructions of her own efforts to achieve safety highlighted strategizing talk, wherein plans were laid and goals for safety were pursued by an individual who evaluated motivations to manipulate relational ties and assert agency over events. Natalie chose as the title for her overall story "Don't Throw Me No Pity-Party," sounding a kind of credo against being defined as powerless by others. Jennifer-Jennifer, a white woman in her late 30s, also emphasized strategizing talk in her approach to managing support in a trauma narrative. Jennifer's strategizing talk underscored differently from Natalie's the ways a woman with criminal justice involvement might find herself having to navigate relationships to get help. The first interview with Jennifer took place in a residential transition program where she was completing court-ordered substance abuse treatment after leaving jail. Five months later, our second interview was conducted on Skype, following Jennifer's move to a distant state for a job. The jail incarceration in which I initially encountered Jennifer was her first, and Jennifer had no prison experience at all. Jennifer's overall life story featured strategizing talk that took form through evaluation and assessment, indeed, a running analysis of the causes behind her actions, feelings, and attitudes. For instance, although Jennifer began her life story by relating an idyllic-sounding childhood and adolescence, that narration of early life was followed almost immediately with premonitory ruminations on what Jennifer identified in hindsight as sources of future trouble. She explained that what she once considered to be a "normal," carefree childhood she now recognized as lacking in emotional connection, steeped in the heavy drinking of her parents' social circle and the superficiality of bonds among her own friends. As a form of strategizing talk, Jennifer's analysis functioned to control interpretation of her life history by making explicit the connections between causes and effects, between her early life and the later perceptions, choices, and actions that comprised the particular, embedded trauma story in which she lost custody of her middle child. Jennifer's trauma story, "And These Were the Last Strings," followed a "downward spiraling" series of events. After college, Jennifer married and had a child, eventually divorced her husband (he was granted custody of the child), and, weary of the frequent travel associated with her career, accepted a less challenging position that left her idle much of the time. Jennifer explained that this led to boredom, and boredom led to vulnerability to substance abuse. Just before becoming pregnant with her third daughter, Jennifer returned a positive drug test. Then, in what she denominated the one real trauma in her life, Jennifer lost custody of her second daughter and was soon after incarcerated. In her narrative, Jennifer focused on assessing intentions, weighing costs, and guiding her audience's interpretation. Her strategizing talk in "And These Were the Last Strings" highlighted a process of risk assessment, outlining the factors that she, as a drug user and a mother, considered in determining whether to initiate a relationship with an agency that might help her address her addiction. First, Jennifer was challenged to identify the right source of help-whom to entrust with her predicament. The right assistance, she observed, was "not very easily found." She then reviewed the costs of disclosing drug use and asking for help, which included potential loss of a child, breaking up the family, and feeling marked as a drug user. Jennifer's strategizing talk highlighted the extent to which a perfectly rational perception of a punitive function (the state's power to remove children) might impede viability of support functions (the state's provision of help for substance use) in the perception of a help seeker. Jennifer also cited the slightly different cost of managing loss of face (E. Goffman, 1967), because, as Jennifer pointed out, asking for help at all was opposed to the bootstraps view of what she ascribed to herself: "I was brought up to get through it on my own." Jennifer's trauma narrative stressed that, if strategizing is the mode in which a woman imagines herself to manage relationships, a lack of legibility or transparency around support -in this case for drug-abusing women with children-might prove prohibitive. To Jennifer's exasperation, nothing about the process of seeking support before or getting formal help after losing her child was "straightforward," except the threat ("grab it or you're gone") related to what Foucault (1990) might have called an imperative to confess. Jennifer recognized that "grab it [and] you're gone" was equally likely, as confessing drug use and getting help for it could very well mean the dismantling of a family. When asked what she would entitle her overall life story, Jennifer tellingly proposed "What Not to Do," a clause that implies a scene of learning, where persons who encounter her story might strategically equip themselves with lessons based on her experience to improve their own capacity to make choices and achieve desired outcomes. --- Fatalizing talk Fatalizing talk was dominant when women expressed a sense of compromised self-efficacy in making decisions and managing relationships for support in their narratives. In fatalizing accounts, women represented crisis and their own roles in it as either foreordained and out of their control or as radically unpredictable and incomprehensible. In fatalizing talk, women ascribed situations and outcomes to fate, God, or chance and identified themselves as detached, confused, surrendering, and dazed observers. Cicely-A Black woman in her mid-30s, Cicely, was mother to four school-aged children, all living by court order with relatives or adopted out. Cicely reported over 10 incarcerations and one prison stay. In her first interview with me in June and again in the follow-up interview in October, Cicely acknowledged recent use of cocaine, methamphetamine, and phencyclidine. When I saw her in a field encounter a month after the second interview, she claimed to be in hiding, saying that a local dealer had a "hit" out on her. In her overall life story, Cicely made frequent declarations of self in which she seemed intent on establishing agency: no-nonsense, goal-driven, someone who gets stuff done. In the chapter she created around her relationship with the father of her first three children, for instance, Cicely outlined her role as the family supporter, "the breadwinner," and "a gogetter," working two and then three jobs to provide for the household. In a formulation that she repeated in almost identical terms in the two interviews, Cicely stressed her attitude about roles in her relationships: "[I]f you ain't about to go get it, then get out of my face, so I can go get it myself." Based on such self-defining moments, one might expect Cicely's trauma narratives to be dominated by strategizing talk. What instead emerged in both Cicely's life story and her stories of crisis was more aligned with a second cluster of story attributes, those defining of fatalizing talk. Cicely's life story had a reactive, chaotic quality to it, a disjointedness that was especially evident in the recounting of her early years, where she reported moving from mother's and grandmother's homes in one part of the country; to father's, aunt's, and paternal grandmother's homes in another; to foster homes; to a state-administered children's home; to an uncle's home; to being on the run; to living at 16 with a much older male partner. Similarly, her embedded trauma narratives, which were numerous, featured disorder, including lots of motion but not much focused direction. Events appeared to occur at random or as inevitable, and other people's motivations were elided altogether or depicted as inscrutable. Exemplary of fatalizing talk around the management of relationships in Cicely's narratives of trauma was the protracted and circumlocutory account she gave of her relationship with Ángel, a long-term partner with whom Cicely had two children. At the center of that relationship, and arguably an organizing force in her life story as a whole, was the embedded trauma narrative of the death of Cicely's child, James. Cicely volunteered the story of James's death, here titled "'Til Today I Still Don't Understand," but she clearly found it difficult to narrate. She wove her way to the infant's death gradually. Cicely prefaced with a description of Ángel's strange writing in a secret journal that he called his "manifesto," a detailed, daily chronicle of everything he and she said and did. Then, in another instance of what might be called foreshadowing in a work of fiction, Cicely described how during a home visit a social worker or public health nurse told Cicely that her son lagged developmentally, that "when he was about six months, he was probably about maybe four-you know, his level." In the same segment of narration, Cicely recounted having a mysterious premonition or "prevision," in which, overcome by a sudden conviction that her child would not be with her much longer, Cicely told her mother, a month before his passing, "I don't think he's going to make it." Finally, immediately before the events of the morning of James's death, Cicely shared that she believed she had previously witnessed Ángel trying to smother her older child (by another man), when that child was 6 months old. By these means, Cicely created a context of inevitability, retrospectively constructing the infant James's death as an event destined or foretold. Cicely's fatalizing talk became more intense as she narrated the trauma. In telling the trauma story, Cicely portrayed herself as baffled and helpless, unable to control and struggling to piece together the meaning of events. A dreamlike passivity reigned over "'Til Today," marked in Cicely's delivery by a liberal use of the coordinating "and," the substitution of pronouns ("he," "him") for names, and rhetorical cushioning through repetition of the qualifier "kinda." The account was structured less through a replay of its teller's actions than a series of unanswered questions, bookended by the twin suspicions that Ángel tried once to smother her older son and now might be responsible for the death of her younger one. Within the story, Cicely's questions flowed unanswered from one to the next as she queried what Ángel was doing with James on the bed and what he was doing afterward with the bottle in the closet, why her child was pale and motionless, why the child vomited so much during cardiopulmonary resuscitation (CPR), where Ángel was while she was at the hospital, and what the police and/or courts eventually determined to be true about James's death and Ángel's role in it. Even 8 years after the event, Cicely constructed a story of trauma in which the self she narrated moved through events as a perplexed observer-detached, alone, full of wondering horror, noting without comprehension the gaps left unfilled. Cicely's fatalizing talk exemplified vagueness and passivity, qualities that were nowhere as clear as in her final, aggrieved admission of inaction due to uncertainty: "I stayed with him . . . I was torn. I didn't know." Cicely's fatalizing talk was at odds with repeated and explicit references to herself in strategizing terms ("And I'm a go-getter, and I will make it fuckin' happen, and we ain't got something, we about to go get it"). In her embedded trauma narrative, she created a mood of helplessness and detachment, deploying formal elements such as questions, gaps, digressions, and foreshadowing to call into relief her diminished role as an agent who could manage social ties to get support for herself and her children. When Cicely acknowledged relationships-the nurse/social worker, her mother-they were perceived not as opportunities for support, even failed ones, but instead functioned as part of the story's machinery of inevitability. Through fatalizing talk, Cicely created what might have been emotionally necessary detachment from a memory that continued to be too painful to bear. She could recollect and narrate the scene of trauma but only through an observer's lens of detached bewilderment. --- Gradations I have concentrated on explicating extreme cases of strategizing and fatalizing in the interviews, though more frequent in the interviews were the many gradations between the two. In "It was Just Boom," Neta highlighted how the two modes of talk might be found working in conjunction in a single story. Neta-Neta was a 45-year-old Black woman with multiple jail incarcerations and more than a decade in prison. "It was Just Boom" presents the conclusion of a story in which Neta described moving several 100 miles from her home and extended family network to live with a partner whom she met in drug rehab. The man beat her viciously over several months, policed her every move, and at one point pushed her out a third-story window. In Neta's narrative, the crisis was no random, unpredictable, inscrutable, or fated event. Neta instead began the story with strategizing talk, reasoning from cause to effect, citing her accountability. Neta judged that it was her own transgression of a well-known rule that led to her predicament: "Tried to get clean again. Went to treatment. I did the big no-no." In what followed, however, Neta switched from an agentic approach to explain the abuse (i.e., "my mistake") to a fatalizing approach to narrate its resolution. That is, once the action shifted to escape, Neta minimized cause-effect and motivation ("It was just boom"). She assigned management of events and relationships to her abuser's sister. The action was both sudden and other-initiated-for example, "she asked me," "she put me"; indeed, the sister issued the imperative and gave it urgency: "If you gonna leave, it's time to go now." As did other women in the interviews, Neta performed a mix of strategizing and fatalizing in her storytelling about crisis. She moved along a continuum of agency, from strategizing talk to fatalizing talk when she shifted from blunder (self-attribution) to remedy (other attribution). It is worth remarking that the use of strategizing talk in Neta's story, while possibly reflecting a useful guideline (i.e., avoid hooking up with others in recovery), signaled as well a kind of victim blaming in which Neta assigned to herself responsibility for the abuser's lack of regard for her human rights. Neta's account of trauma not only highlighted the quality of continuousness in the continuum of agency but also undermined the too-easy assumption that strategizing talk, with its assertion of self, is necessarily beneficial and, by implication, that fatalizing talk is necessarily harmful. As summarized in Table 1, the continuum of agency, for which strategizing talk and fatalizing talk map two poles, was reflected in women's narratives through (a) presentations of self, (b) recurring emphases in theme, and (c) patterned structural and the performative elements. If the modes of strategizing and fatalizing talk designated two poles in theory, in practice they more typically overlapped and alternated, often co-occurring in individual stories, with neither mode proving neatly characteristic of all the stories of trauma told by any one woman. --- Discussion This study examined how strategizing talk and fatalizing talk occurred in trauma narratives in which women with history of incarceration described their struggles to access social support for health and safety. In their accounts of crisis, the storytellers constructed selves and organized and gave meaning to events. When participants like Natalie and Jennifer engaged in strategizing talk, they presented themselves as beleaguered fighters who made or at least tried to make accurate assessments about how, when, and from whom to seek support. Strategizing talk marked stories in which women demonstrated a sense of agency in the midst of crisis. In contrast, in trauma stories where fatalizing talk was more dominant, the women's self-presentation highlighted helplessness, a quality exemplified by Cicely, who depicted herself as overwhelmed and passive, moving through events as a dazed observer rather than as an actor. In fatalizing talk, events unfolded along thematic lines that stressed randomness and the unfathomable, unpredictable will of others-or, alternatively, destiny, the unfolding of something preordained and inevitable. As might have been the case with Cicely, fatalizing talk probably reflected the need of storytellers to buffer unbearable memories-functioning to protect women from painful feelings of reexperiencing, regret, guilt, or abandonment-or as a stopgap for the perceived lack of coherence and connection in event, intent, and outcome that researchers have associated with the recall of trauma (Bromberg, 2003;Janoff-Bulman, 1992). --- Feminist Standpoint and Relationality A central premise of feminist standpoint and relational theory is that women tend to prioritize connectedness over autonomy in understanding self and exercising judgment (Comstock et al., 2008;Miller, 1986). Such tendencies are no doubt found among individuals of any gender group, but according to some feminist-relationalist perspectives, historically, women's socialization might have led them to organize identity, action, and ethics around mutuality over autonomy, cooperation over competition, and collaboration over conflict (Gilligan, 1982;Mackenzie & Stoljar, 2000;Miller, 1986;Miller & Stiver, 1997). The disruption, absence, or denial of social bonds that occurs in trauma (and, for that matter, in incarceration) might be especially difficult for women to cope with (Covington, 1998). The embedded narratives of trauma analyzed for this study indicated that women longed for but were often thwarted in establishing socially supportive relationships. Researchers have found that both during and after incarceration, the psychological effects of complex trauma can produce a combined fear of and need for connection that complicates women's ability to access support through social relationships (Fedock, Fries, & Kubiak, 2013;Fuentes, 2014;Kubiak, 2005). Thus, the strategic talk in both Natalie's and Jennifer's narratives was full of accusatory and alienated references to parents and siblings, making clear the women's perceptions of ruptured connection-of abandonment or isolation in times of extreme need. For Natalie, in particular, this seemed to lead to a still more tenacious insistence on self-reliance. In contrast, Cicely employed fatalizing talk in her trauma narrative to express a sense of broken connections and the unfathomability of others' perspectives and motivations. The effect of interpersonal trauma on relationality for women is a basis for the argument of Covington (1998Covington ( , 2007) ) and others who have been involved in the gender-responsive corrections movement, which stresses women's prioritization of relationship and susceptibility to retraumatization as a rationale for criminal justice system reform (Bloom, Owen, & Covington, 2002;Harner & Burgess, 2011;Wright, Van Voorhis, Salisbury, & Bauman, 2012). The present study contributes to this conversation by illuminating what health care and service providers outside of corrections might hear when justice-involved women with significant lifetime experience of interpersonal trauma seek to position themselves narratively as agents in quest of support within the community. --- Managing Social Relationships for Support in a Context of Trauma Social support is governed by principles of direct and generalized exchange undergirded by trust, in which members, even in underresourced networks, assume that everyone gives and everyone takes, so that a kind of balance is maintained across relationships (Domínguez & Watkins, 2003;Lourel, Hartmann, Closon, Mouda, & Petric-Tatu, 2013;Plickert, Côté, & Wellman, 2007;Uehara, 1990). For women whose material and psychological resources are overtapped, the requirement of exchange means that even support accessed through family and close friends can be perceived as highly restricted, hedged in with caveats and hazards (Hawkins, 2010;Offer, 2012;Offer, Sambol, & Benjamin, 2010;Radey, 2015). In Natalie, Neta, and Cicely's life stories, close social bonds were subject to limitations similar to those cited elsewhere in the literature on underresourced networks, including exhaustion of bonds due to demands that are too frequent or too great (conditions that become more likely when drug abuse, violence, homelessness, and repeated incarcerations are prevalent; A. Goffman, 2014;Harknett & Hartnett, 2011) and resultant feelings of guilt, resentment, and social isolation (Offer, 2012;Ray, 2015). Only Jennifer presented a divergent case. Jennifer's socioeconomic status and absence of reported physical and/or sexual trauma meant that she almost certainly enjoyed structural and situational advantages unavailable to others in the study, including a social support network with more resources on which she could draw for support. Yet, even Jennifer's trauma narrative-delivered in a primarily strategizing modehighlighted how frustrating and at times discouraging the navigation of support could be. --- Implications and Recommendations The women in this study struggled with drug abuse, poverty, and unstable housing. Nearly, all the women carried a disproportionate share of traumatic loss or injury, much of it involving recurrent interpersonal violence. Given the dearth of public assistance available to women so situated and the high unlikelihood of increased programmatic focus on their needs in the near future, it is urgent for health care and service providers to learn how to hear and build on women's own perceptions of and strategies for accessing informal ties for support. Careful attention to women's narratives should provide lessons for more effectively supporting them in what works and helping them find alternatives for what does not. Health care and service providers who practice in community and clinical settings should be educated in and prepared to give trauma-informed care (Harner & Burgess, 2011). They can further understand that health and safety challenges among women in this group are met within a limited horizon of real and perceived choices related to agency and relationship. Bourdieu's concept of habitus is useful here, as Bourdieu explained how the perceptions that shape action (for him, "practice," 1980, p. 54) occur within contexts that are already structured by socioeconomic determinants (Bourdieu, 1980;Bourdieu & Wacquant, 1992). What might look like poor personal decisions from the outside might not have the look of decisions at all from the women's perspectives. To recognize the operations of a continuum of strategizing and fatalizing talk in women's trauma stories is to acknowledge an underlying dialectic of structure and agency in women's attempts to cope (Rutten & Gelius, 2011;Sweetman, 2003). As an organizing tool, the model of strategizing and fatalizing talk can focus attention on how women manage agency and relationship, self and other, in accessing social support. Health care and service providers who meet with women during or after an incarceration, and who hear their stories in the course of assessing or advising women, need to be aware of both modes of talk and the perceptions about agency and relationship that they imply. However, simply listening for and supporting women in recognizing the ways in which strategizing can facilitate and fatalizing can obstruct the management of social ties might not be enough. In some cases, strategizing talk might mean asserting inappropriate personal responsibility when structural contingencies or other people should be held accountable for a situation. Similarly, fatalizing entails inaction, detachment, and displacement of self, but those might be strategies for survival as well as avoidance, and in certain cases they might represent the best strategies for staying safe. Assisting women in meeting their health and safety needs will require something more than administering an instrument-and probably more than careful listening and dialogue at an individual level. Because this is a population with distinctive shared needs, population advocates, lawmakers, service administrators, and program designers should also have familiarity with how justice-involved women perceive structurally constrained choices. Strategizing and fatalizing talk provide a preliminary framework within which to begin thinking about how to push for programs and policy changes to create coordinated services and more supportive environments and opportunities. These will be necessary to help women recast their stories, learn to reconceive options, and, in particular, ensure that access to resources exists to move women beyond simply getting by. --- Limitations In this study, I derived theory through thematic and structural analysis of narrative data from in-depth interviews with 10 women. I sought to achieve credibility and trustworthiness for the model by sharing sizable segments from the narrative data and a fairly detailed demonstration of interpretive process in the findings, thereby giving readers means to judge the applicability of interpretations to other, similar situations (Guba & Lincoln, 1985). To further strengthen trustworthiness, I used repeat interviews and consulted with a team whose members iteratively and independently memoed on the interviews and regularly discussed interpretations over a yearlong period. Regardless, judged by standards of probabilistic research that seeks to make statistically generalizable claims about populations, the small number of cases might be deemed a limitation by some. I would offer that narrative analysis, the holistic reasoning about underlying realities through detailed analysis of languaged data (Patton, 2015;Polkinghorne, 1988), tends to be information rich, requiring a few detailed cases (Malterud, Siersma, & Guassora, 2016). Indeed, given detailed enough narrative data, analysis might be better performed through interpretation of a few cases than many (Creswell, 2014;Maynes, Pierce, & Laslett, 2008). Another limitation of the study would be that the derivation of a strategizing-fatalizing model does not on its own give much specific guidance as to use, a limitation that might be expected in an exploratory study where next steps could take several directions, including the further refinement of constructs and the operationalization and validation of the model for future use in interventions. Finally, to be more complete, this study might have included consideration of the obverse of strategizing and fatalizing talk, the strategizing and fatalizing silences, or spaces where women who have experienced much trauma leave traces of self in relation to other through what is left unsaid. --- Conclusion Strategizing talk and fatalizing talk emerged from narrative analysis of women's trauma stories as two ends of a continuum that mapped perceived agency in accessing support through interpersonal ties. The women who participated in the interviews were complex individuals, every one of them navigating her own set of highly challenging circumstances. In the community and in clinical situations, health care and other service providers working with justice-involved women can learn to recognize patterns of self-other management to better capitalize on the knowledges and aptitudes that women already evince in accessing support through social ties. Where ways of managing those relationships lead to greater health and safety risks for women, a clearer, more incisive understanding on the part of providers might suggest openings where new interventions can be targeted. Of course, the framework presented in this analysis will only be useful if those who are in positions to give support cultivate the ability to listen closely and respectfully for the nuanced ways in which women express strengths and weaknesses through the stories they tell. --- Supplementary Material Refer to Web version on PubMed Central for supplementary material.

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Determinants of safe sexual behavior of female sex workers in Tehran: the woman, her network, and the sexual partner

Background: Despite the steady growth of sexual transmission of HIV, there is little evidence about safe sexual behavior of FSWs, and social network effects on this behavior, in Iran. Our aim in this study was to determine the effect of social network characteristics on condom use among FSWs, considering individual characteristics of the FSWs and of their sexual partners, characteristics of their relationship, and the FSW's personal network.A cross-sectional ego-centric network survey of 170 FSWs was carried out in Tehran between January and June 2017. A multilevel ordered logistic regression analysis was conducted to examine the effects of individual and relational characteristics simultaneously. Results: Condom use in sexual relationships of the FSWs on average was rather low. Important determinants of safe sexual behavior were found both at the level of the individual FSW and at the level of the sexual partner. The main determinants at the level of the individual FSW were FSWs' age and HIV knowledge. At the level of the sexual partner, age and education of sexual partners, as well as intimacy, duration of tie, frequency of contacts with a given partner, frequency of contact, perceived social support, and perceived safe sex norms were significantly associated with condom use.The findings highlighted that considering only the individual characteristics of female sex workers is not sufficient for effectively promoting condom use. Factors at the network and dyadic level should also be considered, especially the role of sexual partners. Network-based interventions may be useful which modify social relationships to create a social environment that can facilitate changes in sexual behavior.

Introduction Prevention of Human Immunodeficiency Virus (HIV) infection is currently one of the most important global health concerns. Globally, in 2018, 37.9 million people had HIV, of which 1.7 million were new HIV infections [1]. Despite recent progress in HIV prevention [2,3], HIV prevalence has an increasing trend in Iran [4,5]. According to the last UNAIDS report, 61,000 people were living with HIV in 2018 in Iran [6]. In recent years, patterns of HIV transmission in Iran have been changing. Although injection drug use remains the main cause of HIV transmission, sexual transmission has been steadily growing (from 7% in 2006 to 33% in 2012, and to 42% in 2016). Prevalence of HIV among female sex workers (FSWs) was estimated to be 4.5% in 2014 [4,7,8]. A national behavioral survey conducted in 2010 throughout 14 cities in Iran reported that HIV prevalence among FSWs was 4.5% (95% CI=2.4 to 8.3), 4.8% (95% CI=2.2 to 9.8) among those who had reported a history of drug use and 11.2% (95% CI=5.4 to 21.5) among those who had a history of injection drug use [9]. Female sex workers are a hidden and under-reported population whose risk behaviors such as not using condoms, having multiple partners, using drugs or alcohol before sexual relationships, and intravenous drug use, can contribute to an increased rate of HIV transmission [10]. They engage in sexual relations in exchange for something else such as money, drugs, gifts, and shelter. They are not only themselves at risk for HIV, but also may be a bridging group that may transmit HIV to the general population. According to a size estimation study, there were 228,700 FSWs (95% CI: 153,500-294,300) in Iran in 2012 [7]. However, there is little information about this vulnerable subpopulation and their HIV risk behaviors, due to the fact that prostitution is considered as taboo by both government and the general population, and goes along with high social stigma. According to previous studies in Iran, most FSWs knew that condom use is a method to reduce risk of HIV transmission, but only few of them used condoms with their paying and non-paying partners [11]. Although there are some studies about FSWs in Iran as well as other countries, most of them have focused on assessing individual characteristics of FSWs such as HIV knowledge, attitude, risky sexual behaviors, and sexually transmitted disease status [11][12][13]. However, the FSW herself represents only half of a sexual dyad. Considering the characteristics of only one member of the dyad does not provide sufficient information about the social context of HIV-related risk behaviors and the quality of interpersonal interactions that may facilitate those behaviors and health outcomes. There is ample evidence that social networks have an important role generally for risk and health behaviors by providing opportunities for social influence, social support, and social engagement [14,15], and also specifically for sexual behaviors [16]. There are several Several studies which were conducted among vulnerable population such as injecting drug users (IDUs) [17], men who have sex with men (MSM) [18], and adolescents or youth who use drug or alcohol [19], showed that perceived norms are associated with risk behaviors. Also, previous studies showed that social support from network members, especially gatekeepers (managers or pimps) and peers, was significantly associated with condom use among FSWs [20,21]. Despite the advances in our understanding about the potential role of social networks for HIV risk behaviors, our systematic review study showed that evidence about effects of social networks on HIV risk behavior of FSWs is scarce [22]. Most existent studies only considered a few network-related characteristics such as frequency of contact, trust, and social support among FSWs [21,[23][24][25][26][27][28]. Therefore, a comprehensive study to clarify the mechanisms according to which social network characteristics of FSWs affect their HIV risk behaviors is greatly warranted. Our study is about sexual behavior of FSWs, which takes place in the sexual network made up by the FSW and her sexual partners including her clients and regular partners. When studying network effects on this behavior, factors at the level of the individual may be distinguished from those at the network level. The aim of this study was to determine the effect of social network characteristics on the extent of condom use by FSWs in Tehran, considering individual characteristics of the FSWs and of their sexual partners, characteristics of their relationship, and of the FSW's personal network. --- Methods --- Setting This study is a cross-sectional ego-centric network survey of 170 FSWs in Tehran city, conducted between January and June 2017. An ego-centric network survey provides more insight into the effects of the social network around the FSW on her condom use by making an inventory of the personal network of the FSW and collecting relevant individual characteristics of the FSW herself as well as of her sexual partners. This purpose is achieved using a so-called name generator for making the inventory of the members of the personal network, and a name interpreter for determining their relevant characteristics and relevant interactions. In our study, the FSW who is the respondent is the focal individual (ego) in the personal network. --- Participants FSWs are a hard to reach population in Iran, subject to social and official taboos and social stigma. However, in recent years enormous governmental and nongovernmental investments and efforts have been made to increase the access of this vulnerable population to HIV prevention programs, such as the creation of dropin centers (DICs) and consultation centers for at risk women throughout the country. These centers provide free services including basic sexual and reproductive health care, educational programs about sexual transmitted infections (STI) and prevention methods, HIV testing, and counselling [29,30]. It is virtually impossible to obtain a random sample from a hidden and stigmatized population such as this. Therefore, participants were recruited through snowball, purposeful, and convenience sampling methods as successful alternatives to non-applicable random sampling methods for recruiting 'hidden' populations [31][32][33]. Eligibility criteria were being over 16 years old, having had sex for money, drugs, and so on in the last year, identifying oneself as a sex worker, and willingness to participate in the study. For the snowball sample, to initiate the chain referral process, six FSWs who satisfied the inclusion criteria were selected as index participants. After interviewing the index participants, we asked them to introduce some other sex workers whom they had named as their network members. The snowball sample proceeded according to the principles of respondent-driven sampling [31]. We gave the respondents some coupons for their peer friends, which included the ID number, aim of the study, amount of incentive, place of visit for interview, and an expiration date. Each participant was given 100,000 Rails (equal to 3 USD) as a small primary incentive for participating in the study and completing the interview; and a secondary small incentive, of the same amount, if they had introduced their peer friends, who did sex work and named as their network members. This process continued until five waves. In all waves the participants introduced few peer friends. Some introduced only one or two peer friends named as network members, some others introduced other FSWs who had not been named as their network members. It was impossible to access all peer members who were named by the participants. We completed the sample with convenience sampling and purposeful sampling methods. Convenience sampling was used by recruiting participants among FSWs who attended DICs and consultation centers. Recruitment of study participants in DICs was facilitated by DIC staff, who were personally contacted at the center by the first author. The DIC staff identified potential participants and introduced them to the interviewer. To improve diversity from all involved sites, we also used purposeful sampling from outreach spots such as team homes, streets, and parks by a peer outreach worker who collaborated with the study via a DIC. To maintain anonymity of the FSWs, we received verbal informed consent from all participants, because sex work is illegal in Iran. We provided an explanation regarding the study purpose to all participants, and informed them about the confidentiality and their right to withdraw from the study at any time during the interview. --- Measurements and variables The data were gathered using an investigator-constructed questionnaire, after assessing content validity, scalability, and reliability. The questionnaire consisted of two parts, individual and network information. Individual information was collected about the demographic characteristics age, educational level, marital status, and place of living, and about the frequency of sex work in the last month, HIV knowledge, and HIV test. For network information, first, a name generator inventory [34] was applied to indicate the FSW's sexual network members. The sexual network was defined as the set of nominated persons with whom they had had sex in the past 30 days. We asked the FSWs to nominate up to 5 persons with whom they had any sexual relationships during the past 30 days. For these nominated persons further information was collected including socio-demographic information, duration of contact, frequency of contact, frequency of condom use, intimacy, social support, and drug or alcohol use before a sexual relationship with him. The data was collected in face-to-face structured interviews by trained peer interviewers, which was helpful to build trust and get honest responses from the participants. Each interview usually lasted around 45 minutes. --- Socio-demographic variables The socio-demographic variables were collected as follows. Age was recorded in years. Educational level was measured in six ordinal categories, coded as 1 to 6: illiterate, able to read and write, primary education, secondary education, high school or diploma, and university education. Marital status was measured in four categories as single, married, divorced, and widowed; for the analysis this was dichotomized into never married and ever married. Place of living was categorized as homeless, living in the home of others, and personal home. The number of people supported by the FSWs was measured as a count; for the analysis it was dichotomized as zero versus more than zero. The variables collected for the network members were age and educational level, measured similarly as for the respondents. --- Social network variables To assess the frequency of contact with the sexual network members, we asked the participants "How many times did you meet him or did you communicate with him in the last month?". To assess duration of the tie we asked the participants "Since how long have you known him?". This was coded in months. The intimacy of the relationship between participants and sexual network members was assessed with a five-point Likert response, with categories very close, close, somewhat close, distant, and very distant. Social support was assessed by an investigator-constructed questionnaire with five items. Reliability of the items comprising the social support questionnaire was pilot-tested prior to final implementation in this study. Cronbach's alpha and intraclass correlation for the scale were .82 and .85, respectively. Mokken scale analysis was used to assess scalability and unidimensionality of the social support questionnaire [35]. The Loevinger H-coefficient for the questionnaire was larger than 0.5, characterizing it as strong scale. Because sexual network members could be nominated for more than one role or interaction (a sexual partner may also have a familial tie and/or be a drug use partner), the multiplexity of their position was determined. This was defined as 1 if they had more than one role in the respondent's network, and 0 if they had just one role in her network (i.e., only sexual partner). The density of each network was also assessed. To assess density, participants were given a matrix with the names of their mentioned sexual network members on both axes, and then were asked to indicate the pairs of network members who knew each other. The density was calculated as the number of sexual network members who knew each other divided by the maximum number possible, given the size of the sexual network. The variable of drug and alcohol use before or with sex was dichotomized into "yes=1", and "no=0". --- Perceived safe sex norm Perceived safe sex norms were assessed by the perceived norm scale (PNS) of the safe sex norm questionnaire (SSNQ) [16]. The PNS assesses perceptions of the FSW regarding attitudes and behaviors about condom use of their peer friends who do similar sex work. It uses 17 questions each on a five-point Likert scale: "all", "most", "about half ", "some" and "none". These were coded as scores from 1= "none" to 5= "all". The reliability of the questionnaire was pilot-tested. The attainable score range is 17-85. Higher scores indicate that the perception of FSWs of the attitude and behaviors of their friends is that most of them have a positive attitude about condom use and frequently use it in their sexual relationships [16]. Cronbach's alpha and the intraclass correlation for this scale were 0.89 and 0.83, respectively. Mokken scale analysis was used to assess scalability and uni-dimensionality of the questionnaire [35]. The Loevinger H-coefficient for the scale was larger than 0.5, characterizing it as strong scale. --- HIV Knowledge Knowledge about HIV transmission was evaluated by a 14-item tool based on an established questionnaire in the Iranian population [36]. The questionnaire was pilottested with 28 participants in Tehran. Scalability and uni-dimensionality of the questionnaire were assessed by Mokken scale analysis [35]. Each item and the whole questionnaire had Loevinger H coefficients above 0.4, which is good. Cronbach's alpha for this scale was 0.86. The sum score was transformed to a scale of 0 to 100, with high scores meaning more knowledge. --- Sexual practice and HIV test For assessing sexual practices, the participants were asked to report about the frequency of sex work in the last month. This was recorded as a count variable. Participants were also asked to report if they ever had a HIV test. This, together with the test result, was recorded as a categorical variable with values "having HIV test & positive result=1", "having HIV test & negative result or don't know=2", and "having no HIV test=3". --- Condom use Frequency of condom use by participants and the sexual network member was the dependent variable, measured on a five-point ordinal scale. It was defined as Yij = 1 if for network member i of respondent j condom use was reported as 'never' , Yij = 2 for 'rarely' , Yij = 3 for 'sometimes' , Yij = 4 for 'often' , and Yij = 5 for 'always' . --- Statistical analysis Pearson correlations were computed to get a basic insight about patterns of association of all variables. The distributions of the variables were assessed carefully for missing values and outliers, as these might unduly affect the results. Frequency of sex work had three values larger than 20 (two values 25, one 60) which were considered outliers; these were truncated to 20. Taking into account the FSW as well as the sexual partners implies a multilevel structure [37], with the sexual partners, as network members, nested in FSWs as respondent level. The dependent variable, condom use, is a variable at the partner level. As explained below, the analysis proceeds in steps according to a conceptual framework summarizing the role of individual and network characteristics for HIV risk behaviors of FSWs. This framework is based on previous studies of the effects of various factors on HIV risk behaviors [14,[38][39][40] and goes from the more general background characteristics to the social network characteristics. Responses about network members of the same respondent are likely to be correlated. Therefore, we used multilevel analysis [37,41]. The number of respondents (called 'level-2 units' in the terminology of multilevel analysis) was 170; the total number of sexual network members ('level-1 units') was 615. We created a group mean (for groups defined as all sexual network members of a given FSW) for each explanatory variable at the level of the sexual partner, including age of sexual partner, education of sexual partner, frequency of contact, duration of tie, intimacy, social support, and drug or alcohol use before or with sex. This is required to investigate the difference between within-group and between-group regressions [37]. The within-group regression coefficient is the estimated parameter at the partner level, the between-group regression coefficient is the sum of the FSW-level and the partner-level coefficients. Since the distribution of the dependent variable is highly skewed, with five values, we employed a multilevel ordered logistic regression model for ordered categorical outcomes [37]. This was the multilevel proportional odds model, which can be formulated as threshold model with C ̶ 1 thresholds where C is the number of categories of the outcome variable; here C = 5. The mathematical expression of the model is Here Y ij is the observed dependent variable for network member j of respondent i; c is an outcome ranging from 1 to 5; and P indicates probability. Ỹ ij is a hypothetical unobserved auxiliary variable, which can be regarded as an underlying continuous variable that is observed after categorization according to thresholds θ 1 , θ 2 , θ 3 , and θ 4 . The observed outcome is c when Ỹ ij is between the two thresholds θ c-1 and θ c , where the two outer thresholds formally are defined as minus or plus infinity: θ 0 = ̶ ∞ and θ 5 = +∞. The β h are regression parameters; finally, the x hij are the explanatory variables, which cover characteristics of respondents i as well as of sexual network members j; and U 0j is a respondent-level random effect with a standard logistic distribution. We calculated the intraclass correlation coefficient (ICC), a descriptive statistic that measures the proportion of total variance of an outcome that is accounted for by the group level; in this case, the groups in the data refer to the FSWs. In other words, the ICC measures similarity in condom use between sexual partners of the same FSW. It was calculated according to formula (17.26, page 311) in [37], taking the within-group variance equal to π 2 /3=3.29 (the variance of the logistic distribution). The model selection utilizes a conceptual framework based on previous studies of the effects of various factors on HIV risk behaviors [14,[38][39][40] and goes from more general background characteristics to the social network characteristics. This framework distinguishes three groups of independent variables. The first group is composed of the individual background characteristics of the FSW and her sexual partners, as indicated by age, education, and number of supported people. The second group consists of HIV knowledge and the behaviors directly associated with sex work: its frequency, whether it is accompanied by drug or alcohol use, and HIV testing. The third group is composed of social network characteristics and psychosocial mechanisms through which these may affect condom use, regarded as a behavior P Y ij = c = P θ c-1 < Ỹij ≤ θ c Ỹij = h β h x hij + U 0j protecting against HIV risk: personal network density, and the tie characteristics such as duration of the tie, frequency of contact, and intimacy, social support, social norms, and drug or alcohol use before or with sexual relationship. These three groups may be interpreted as reflecting a hypothetical causal ordering, but we use this as a framework guiding the analysis and do not rely on assumptions of causality. In the multilevel ordered logistic regression analyses, a stepwise model selection procedure was employed, in which the groups of variables were entered sequentially. This allowed estimating the effect of social network characteristics on condom use while controlling for individual background characteristics of the FSWs and their sexual partners. It started with the empty model which contained only the dependent variable and the threshold parameters. Micro soft Excel was used for data management (data entry, quality control and cleaning of quantitative data). The data was analyzed by the ordinal package [42] in the R statistical system [43] which allows fitting a variety of mixed effects models for categorical outcomes. p-values less than 5% were regarded as statistically significant. --- Results The mean age of the participants was 34.4 years (SD=7.6). Of the participants, 71 (42%) had a high school or diploma degree. Most participants reported living in their personal home (69, 40%). The mean score of HIV knowledge was 78.2 (SD=19.2). Among the participants, 11 (6%) reported that they had been HIV tested and were HIV positive. The mean age of initiating sex work and the frequency of sex work, after truncating outliers in the latter to 20, were 24.1 (SD=6.6), and 10.2 (SD=6.4), respectively. Table 1 shows the socio-demographic characteristics of the participants in detail. As Table 2 shows, the distribution of condom use, the dependent variable, was highly skewed. For most of the partners, FSWs reported that they never used condoms in sexual relationships with them in the last month (N=346, 56%). Only for nine sexual partners (1.5%) did the FSW always use condoms. The participants named 615 people as their sexual network members. Table 3 gives descriptions of their characteristics. The age of the sexual partners was significantly correlated with the age of the FSWs (Mean=36.7, SD=7.5 vs Mean=34.4, SD=7.6, r=0.64, p < 0.01). Many of the sexual partners like the FSWs had a high school or diploma degree 194 (32%). Many of the sexual partners were married (280, 46%). The mean sexual network size and density were 3.6 (SD=1), and 0.5 (SD=0.3), respectively. Among the sexual partners 175 (28%) had more than one role (e.g., familial tie or drug use partner) in the social network of the FSWs, which indicates multiplexity in the network. The FSWs reported that they did not know the HIV status of 61% of their sexual partners before the sexual relationship. The mean of the perceived safe sex norm was 34.7 (SD=10.4). In the multilevel ordered logistic regression analyses, the intraclass correlation coefficient (ICC) was = 15.51/ (15.51+3.29) = 0.82, signifying high similarity in condom use between the sexual partners of a given FSW. Table 4 presents the results of the multilevel ordered logistic regression analyses according to the three models. The results of the first model, predicting condom use with individual background characteristics of the participants and their sexual partners, showed that FSWs' age, partners' age, and partners' education were positively associated with condom use. Also, the mean education of the FSW's partners was positively and significantly associated with condom use. A one-point increase in the average of partners' education increases by 1.83 the conditional log odds of condom use. However, the mean age of the partners was not significantly associated (Model 1). Model 2, which included variables related to individual sexual practices and HIV test, adjusting for individual characteristics of FSW and sexual partners, showed that frequency of sex work in the last month was negatively associated with condom use. One unit increase in HIV knowledge of the FSWs significantly increases the ). In this model, individual background characteristics of the FSWs and their partners including age of the participants, age and education of their sexual partners, and HIV knowledge, after adjusting for other variables, still showed significant associations with condom use (Model 3). The R 2 values [37] for Models 1 to 3 were 44, 54, and 69%, respectively. --- Discussion An interesting descriptive finding was the similarity between socio-demographic characteristics of the FSWs and their sexual partners (homophilous sexual partners in network terminology), consistent with Newcomb's study among MSM in 2013 [44]. Such a similarity may create feelings of mutual perception, trust, and emotional closeness, which may lead to unsafe sex behaviors. Another important descriptive finding was the marital status of the FSWs and their sexual partners: most of them were married. This finding is consistent with other studies, and highlights the bridging role of FSWs and their sexual partners in transmission of HIV to the general population. Our finding showed that condom use on average was rather low. This finding is consistent with previous studies [45,46] and suggests that not only infection risk, but also pregnancy risk is not a big stimulus to use condoms among Tehran FSWs. A national bio-behavioral survey among Iranian FSWs in 2010 reported that about 35% of the FSWs had a history of lifetime abortion. This abortion figure suggests that the effective protection against pregnancy risk is not very strong [46]. One explanation for this finding is related to the social stigma and negative attitudes from the community towards FSWs which has constructed an environment that is hardly conducive to accessibility of HIV prevention, condoms, and reproductive health services such as contraception [47,48]. According to the final model of the multilevel analysis (Model 3, Table 4), the age and HIV knowledge of the FSW as well as the age and the educational level of her sexual partner had a positive effect on condom use. As regards the behavioral and attitudinal variables, intimacy with the sexual partner, as well as the duration of the tie, and the frequency of contacts, all had negative effects on condom use. For most variables at the partner level, the only variable with a significant effect for the group mean was frequency of contact with the sex partner, for which the within-group regression coefficient was estimated as -0.270 and the between-group regression coefficient as 0.075-0.270 = -0.195. This means that FSWs used condoms less with the clients with whom they had more frequent contact. Also the average condom use for FSWs who saw their clients more frequently was larger than for other FSWs, but this effect was less strong that might be expected based on the differences between clients for any given FSW. As regards other characteristics of the social network as a whole, perceived social support from the sexual partners, and perceived safe sex norms in the network of peers had a positive effect on condom use. One explanation of the effect of age may be that older people have more knowledge and experience especially about consequences of unsafe sex and risk behaviors, and therefore may act more conservatively and more frequently use condoms in their sexual relationships. A related finding by Schick et al. [49] is that American adults over 50 years old who were in situations that posed an increased potential for risk (e.g., an unknown partner history or STI/HIV status) were more inclined to use condoms in their sexual relationships. However, some other studies, especially in the general population, showed contrary results as adolescents and younger adults used more condoms in their sexual relationships than older adults [50]. These contrasts may be due to differences in the studied populations, methodological aspects, and also social and cultural contexts. Iranian society is characterized by specific cultural and political settings, within which religion has an important role; educational programs for adolescents and young people, especially in public settings such as schools, are not usual and meet with various social and cultural sensitivities. Therefore, adolescent and young people may have insufficient information and knowledge about HIV risk behaviors, sexually transmitted diseases, and risk prevention methods, compared to adolescent and young people in other countries. Another reason which is specifically related to the context of our study, the FSWs in Tehran, is that younger FSWs, especially those who have relationships with older FSWs or pimps, may have lower HIV risk perception, because they have not been informed sufficiently about HIV risks and are more strongly controlled by the older FSWs or pimps in their networks [51]. FSWs with more HIV knowledge reported more frequent condom use. However, in spite of their rather high mean HIV knowledge, many FSWs reported to rarely or never use condoms in their sexual relationships. This suggests that having HIV knowledge in itself is not sufficient for safe sex practices among FSWs. The positive effect of knowledge corresponds to the positive effect of the educational level of FSWs' sexual partners. Sexual partners with a higher educational level may have more knowledge about healthy behaviors and consequences of unsafe sex (health literacy), and may better understand the necessity of condom use. This finding is consistent with previous studies [11,12,52] and highlights the importance of educational programs for FSWs' partners to prevent HIV risk behaviors. FSWs with more frequent sex work in the last month were less likely to use condoms. However, the statistical significance of this association was a borderline. Frequent sexual relationships may go along with having multiple sexual partners, which would add to the risk of HIV infection since having frequent sexual relationships may provide greater opportunity for HIV transmission due to increase the likelihood of unsafe sex and exposure to HIV infected partners. This finding is consistent with previous studies [53,54]. Our findings showed that frequency of condom use varied with the sexual partners. The FSWs used condoms significantly less with partners whom they had known for a long time; had more frequent contacts with; with whom they perceived more intimate relationships; and from whom they obtained more social support. These findings are consistent with previous studies [27,[55][56][57][58]. However, only one of these is a quantitative social network study among FSWs with partner-level information [57]. One explanation is that these mechanisms may create mutual trust and increase feelings of emotional closeness relationships between the FSW and her sexual partner [59]. After a long-term and repeated partnership, the FSW may have become familiar with her sexual partner and feel she knows him well. This may lead to accepting his requests for unsafe sex. This may further depend on several reasons such as the socio-economic status of the FSW and her dependence on her sexual partner [57], considering condom use as a threat to the trust in an intimate relationship [58,60], power-gender inequality, inability of the FSW to negotiate with her partner about safe sex, and fear of the consequences of conflicts with him. Further research is needed to better understand the association between duration of tie, frequency of contact, and intimacy with condom use in this at-risk population. Also, in line with previous studies [61,62], our findings indicated that FSWs who perceive that their network members, especially their peer friends, have positive attitudes about safe sex and condom use, reported to use condoms more than those who did not have such a perception. This finding is consistent with Peterson and colleagues [18] who reported that men who have sex with men in the high-risk group, compared with those in the no-risk group, perceived lower positive reactions about condom use among their sexual network members. This confirms that networks are an important context for understanding social norms [63] and suggests that when developing interventions to change behavioral norms, the network context should be taken into account. When trying to promote condom use among FSWs, it may be beneficial to consider not only the attitudes and behaviors of the FSWs themselves, but also the attitudes and behaviors of their network members, especially those of their peer friends, who are colleagues and friends at the same time and may have dual roles as competitors and support providers. Network-based interventions may be useful to modify network relationships so as to create a social environment that can facilitate sexual behavior changes [64,65]. --- Strengths and limitations Our study was conducted on a large sample of FSWs and obtained partner-level information about sensitive behavioral aspects of sexual behavior. We found that condom use on average was rather low. Using a multilevel approach to include variables at the personal, the relational, and the network level, we were able to obtain a high value of R 2 to explain condom use. Variables that stood out in the explanation were associated with age, education, perceived norms in the network, and several variables related to intimacy with the partner. This information may be useful for effective evidence-based HIV prevention interventions. However, our findings should be considered also in the light of three main limitations. First, our study was cross-sectional. Therefore, we cannot draw causal inferences. Second, our findings might be subject to measurement error because our data was self-reported and collected from the focal individual in the personal network about their network members. Finally, our findings cannot be generalized to all FSWs in the country because we recruited the participants using a non-random snowball sampling from one city in Iran. --- Conclusion The findings highlighted that considering only the individual characteristics of FSWs is not sufficient and we should also consider factors at the network level, especially the role of sexual partners, on condom use among FSWs. FSWs who had high-quality interactions with their sexual partners also exhibited more unsafe sex in their sexual relationships. The results suggest that to effectively promote condom use it is necessary to employ combined intervention programs that focus on the FSWs themselves as well as members of their social network. • fast, convenient online submission • thorough peer review by experienced researchers in your field • rapid publication on acceptance • support for research data, including large and complex data types • gold Open Access which fosters wider collaboration and increased citations maximum visibility for your research: over 100M website views per year --- • At BMC, research is always in progress. --- Learn more biomedcentral.com/submissions Ready to submit your research Ready to submit your research ? Choose BMC and benefit from: ? Choose BMC and benefit from: --- Availability of data and materials The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request. --- Authors' contributions ZJ, TS, SAH, HS, and YS contributed in the study design, data collection and had critical feedback on manuscript. All authors assisted in the prepare data for analysis and data analysis, writing, critically reviewing multiple manuscript drafts, read and approved the submitted version. --- Declarations Ethics approval and consent to participate The study protocol was reviewed and approved by the Ethics Committee of Tehran University of Social Welfare and Rehabilitation Sciences (IR.USWR. REC.1394.187). All methods were carried out in accordance with relevant guidelines and regulations/Declaration of Helsinki. Informed consent was obtained from both literate participants and the legal guardian(s) of all illiterate participants. --- Consent for publication --- Not applicable --- Competing interests The authors declare no conflict of interest. --- Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Introduction: Disasters as Politics – Politics as Disasters

What is the relationship between politics and disasters and how does this relate to the recent boom in disaster studies? The introduction to this volume argues that the recent interest in disasters is not because there are more disasters, but because of two recent developments within the social sciences: first, a focus on rupture rather than on continuity and second, a focus on materiality. Disasters are the intersection of these changes. Disasters are ruptures of society and thus inherently political. They provide a particular kind of rupture, one which does not simply affect values and norms, but the material backup of society and its material infrastructure. From this starting point, the article discusses two movements of how to relate disasters and politics: disasters as producing politics and politics as producing disasters. The former begins with disasters and considers how they acquire the power to recompose the world. Disasters from this point of view not only produce politics, but a particular kind of (cosmo-)politics that deals with how humans relate to technology and nature. The latter begins with politics and considers how politics produces disasters. Here, as for example in preparedness, risk assessment and state of exception, politics is the productive force and disasters become means to legitimate, produce and arrive at certain politics.

Sociology Discovers Disasters Suddenly, disasters are everywhere. The social sciences have recently increased their output in disaster writing massively. The world is one big disaster. Crisis looms. The end is near. One way to diagnose this state is by pointing to an actual increase in disasters. This could be called a naturalization of the problem. Another diagnosis is to point to a general catastrophic cultural mood, a Zeitgeist, what we could call a culturalization. The first diagnosis, naturalization, is problematic for two reasons: disaster statistics tell a complex story: roughly speaking, throughout the 20 th century, the number of people killed by disasters has decreased, while the number of disasters and the damages reported has increased. 2 In short, society protects people better, but disasters have become more frequent because people build and live in increasingly disaster prone areas. Moreover, sociologically speaking, discourses need not be in sync with events, as every student of anti-semitism or racism knows. Just because there are more disasters, there need not be more attention to them. Conversely, an increase in perceiving disasters does not necessarily mean that there are more disasters. There can be other reasons, as the forecasting of the now forgotten Millenium Bug showed. The second, the general Zeitgeist argument may be true, but it is unlikely: Why should it hold for many societies on very different paths? Why would we assume its continuity, after the end 2 The number of people killed by natural disasters has decreased from an average of a million or so per year in the first half of the twentieth century to a few hundred thousand per year in the last decades, but the number of disasters reported, the number of people affected, and the reported damage measured in Dollars has increased by several orders of magnitude since the 1960s. For technological disasters, the same holds, except that the number of disasters reported has decreased since ca. 2000. All data are taken from the International Disaster database EM-DAT: http://www.emdat.be/natural-disasters-trends (last visited 2nd of may 2013). time scare of the Millennium Bug faded? Also, a preliminary bibliographical analysis with Google Ngram shows that the general thematizing of disasters did not really increase, while the sociology of disasters increased remarkably since the mid-1990s. 3 The question then is: Why can we observe such an increase in dealing with disasters in sociology and its neighbouring fields, an increase that is way out of proportion compared to the general increase in disaster literature and the actual amount of disasters? Insert Figure 1 here: Google Ngram of books containing the words sociology of disaster, sociology, disaster (relative total amount of books) I will thus attempt a third answer, which we could call politicization, much more pertinent to this volume. The answer proposed here is that disasters emerge because our theoretical 3 Google Ngrams shows the percentage of books containing certain words relative to all books on Google books. It is a relative, not an absolute measure. I have used the ngrams for "sociology of disaster" and "sociology of disasters", because these are a small amount of texts. The Ngram presented here have "sociology of disaster" multiplied by 10000 to make them comparable with the other two Ngrams. In other words, unsurprisingly the word "disaster" occurs approximately 10 000 times more often than "sociology of disaster(s)". The Ngram for sociology is included to show that the increase of "sociology of disaster" is not a function of a general increase in literature containing the words "sociology" (which actually decreases after a peak in the mid 1970s). apparatus makes us more sensitive to them. They allow social science to test various theories and interests that have come to the fore in the last ten or twenty years. This third answer does not necessarily contradict the other two. It sits beside them. This volume contributes to a further calibration of our conceptions of disasters, focusing on how accounts of disasters are produced and the effects they have in the world. This calibration of disasters also allows us to move the sociology of disasters from the applied margins of the discipline, as an ancillary science to the practical concerns of disaster management, to the central concerns of general sociology (Tierney 2007). The problem of naturalization and culturalization is that they both conceptualize disasters without recourse to politics. In both options, disasters increase, or discourses increase, but how this relates to politics remains unclear. In contrast, the various articles in this volume attempt to understand disasters as politics, and politics as disasters. In short, they analyze both the notion of disaster and the notion of politics. --- Two Movements to Conceptualize Disasters This new relationship between politics and disasters can be understood by combining two important movements within the social sciences. The first relates to an interest in breaks and ruptures, rather than continuity and structure. This is closely linked to an attendant idea of politics as problematization of the composition of the world. Disasters as ruptures produce new compositions of the world and they force explications of these compositions. The second movement relates to an interest in reconceptualising nature or the non-human as actors. Disasters, like accidents, are, sociologically speaking, the result of the combination of these two: they radically question the composition of the world, in all its technical, natural and social forms. Before discussing these two movements in detail, it is important to stress that conversely, there are other sociological ways to understand disasters, which eradicate either of the two. To start with, it is possible to understand disasters not as ruptures but as exaggerated continuations of the normal (Woodhouse 2011). From such a perspective, there are no disasters as ontologically different events from other events in the world. To believe that disasters are exceptional is to misunderstand disasters. Disasters are nothing but what happens in the world anyway, just with a different intensity. From such a perspective, there is no need for a different way of analysing and reacting to disasters. There is neither a need for a different methodology, nor for a specific theory, and there is indeed nothing inherently interesting that sociology can learn from disasters. Whatever society is, disasters are part of it. To further elaborate this argument, one could say that to insist on the ontological specificity of disasters implies buying into an ideology of disasters, that uses disasters to legitimate certain political goals (more on this below when discussing the state of exception). Furthermore, in this argument it is possible to understand disasters as purely social events. Indeed, the original sociological attempts to understand disasters first needed to establish disasters as sociological issues, claiming them from the monopoly of the natural sciences. Sociologists introduced the term disaster to differentiate from hazards, understood as a physical events (Perry 2007, p.8 ff.). According to this definition, a hazard turns into a disaster by its social effects. An earthquake happening in a region where no humans live is not a disaster, it is just a trembling of the earth. This definition, then, is not about separating the human from the non-human but instead about trying to account for the fact that some natural events relevant for natural scientists -earthquakes where nobody is harmed -are not relevant for a sociology of disasters. This argument is, so to speak, premised on a negative definition of disaster: a disaster is a rupturing event, specifically one that ruptures human society. Similarly, sociologists helped to establish the idea that disasters are not natural or technical, in the sense of inevitable and uninfluenced by society, not only in their effects, but "man-made" (Turner 1978) and result from organisational routines (Weick 1993;Vaughan 1996). Such a definition was needed to create space for sociology within disaster studies, a field still dominated by the natural sciences. But for disaster studies within sociology such a definition is tautological: once they are thematized by sociology, what else would disasters be if not social events? Rather, the problem for sociology, once it has identified disasters as a proper theme, is how to conceive of disasters without understanding them as purely social events. Or, in other words: the problem for sociology is how to understand something that has its origins (at least in the case of natural and technical disasters) so obviously not within society. Thus both of these negative answers of a sociology of disasters become framed, visible and problematic through the development of two separate trends within the social sciences. The first trend is to conceptualize disasters as ruptures and thus inherently political and second to conceive of them as not within society but still an object of sociology. Taken together these trends demand certain theoretical changes within the general apparatus of sociology. Only once such a general re-orientation of sociology is in place, do disasters start to make sense as relevant objects for a general sociology as opposed to their being simply another object for the expansion of sociology. Disasters, as non-social ruptures, are ideal test cases for these new strands of sociology, precisely because they highlight and enable the discussion of these new orientations. To understand the first movement, it is important to see how disasters are at odds with most sociological theories and the foundational assumptions of social theory. Since Hobbes' Leviathan, the problem for social theory was the problem of order and the explanation of stability: in short, to look at what connects one social instance with another over time, rather than looking at events that punctuate continuity and disassemble one instance from another. 4In this tradition of social theory man is disaster -and politics (or society in general) is what saves men from killing each other. Whether it is the state, or values and the social system (Parsons), fields (Bourdieu), imitation (Tarde) or technology (Latour): the arrow of explanation is always towards explaining what holds society together, what produces stability and predictability, assuming that society has a "natural" tendency to fall apart. This is why early disaster studies needed to legitimate this unusual derivation. When Erikson did his pioneering study of the Buffalo Creek flood, he thus felt compelled to defend his decision to focus on one "unique human event", "a task normally performed by dramatists or historians" (Erikson 1976, p.246).The predilection to explain stability also explains why many studies of post-disaster communities can make the seemingly counter-intuitive claim that after disasters communities do not necessarily fall apart, but re-adjust (Carr 1932, p.213), are inventive or even hold together better (Jencson 2001;Kendra & Wachtendorf 2007). Breaching experiments in ethnomethodology were probably the first attempt to put rupture at the expense of continuity at the heart of social theory and to use rupture to learn about the composition of the world (Garfinkel 1967). The study of controversies has borrowed this insight by understanding that calling into question, critiquing and disagreeing are sociologically productive processes. These perspectives together have informed studies of accidents, breakdown and repair (Heath et al. 2000). As intellectual precursors of disaster studies (as understood here), studies of accidents showed in small scale how the world falls apart and needs to be put together. Disasters considered as ruptures expand these insights and methodologies to a much larger scale and even to the world (see Clarke, in this volume). 5 By shifting the focus to large scale events and the problem of the contingency of the world they allow us to see how the world is composed. Disasters, then, become inherently political events because they pose questions about who should be allowed to re-compose the world and how (see Farias and Tironi). The shift from accidents to disasters is, then, not merely one of scale but of focus: if a disaster cannot be contained within one location, one machine or one organisation, issues of politics, distribution and justice come to the fore. Who should be responsible for action (Farias)? How does society distribute preparedness (see the articles by Easthope and Mort, and Deville et al.)? How should collectives make decisions regarding risks (Weszkalnys and Ellis)? How should the world be rebuilt (Tironi)? To understand the second movement, it is important to understand that the concepts of disasters and of preparedness measures are both at odds with a purely social sociology. If sociology is the analysis of the social world, actual disasters (and not only their aftermath) become difficult to describe for sociology. How to describe a disaster, if not by describing the movement of earth, the masses of water, the falling trees, levees and houses, the rubble and dust, the birds (Rodríguez-Giralt & Tirado) and contaminated letters (Ellis)? How to explain preparedness and recovery without recourse to bulldozers, dams and bunkers (Deville et al.)? This new sociological interest in materiality has its roots in the laboratory and in new technologies. It emerged from attempts to understand how scientists construct facts and invent new technologies. From these initial questions, it has spread to all kinds of fields, but it is important to keep its origins in mind since, as Clarke has argued, the materialism of Actor-Network Theory (ANT) and its allies is a materialism of divide and control over technological artefacts (Clark 2010, pp.34-40). It usually assumes scientists and engineers construct things in order to control other things or people. In disasters, however, the situation is very often quite different. Disasters are situations when matter is out of control and, compared with studies of accidents, out of control on a massive scale. In fact, if there were a need to tell accidents apart from disasters, it would be the remaining amount of control over actor networks. Accidents are contained and control lapses momentarily and spatially on a relatively small scale -a space ship explodes, a car crashes, a train derails-, but the larger network continues to work (it is no coincidence that the examples here most relate to traffic). Repair, as a counter strategy can focus on the technology that stopped working (Graham & Thrift 2007). In an earthquake, nuclear disaster or flood, there is no such possible focus. Disasters then, would be defined as networks or cosmograms themselves that collapse, which radically poses the question of the composition of the world as a whole. Power and intelligibility ceases not just for one particular part, but for all parts involved. Disasters, even more than accidents, are test cases to understand a world in which the material and the natural are not only an object of concern and control, but the very origin of radical change. But this very wholeness also poses a problem for Actor-Network Theory because the vocabulary of ANT is geared towards disentangling big concepts into micro-processes. But, one might argue, disasters are precisely those events that cannot be disentangled and that act and are experienced as one big entity. As suggested in the articles of this book, it might be argued that the analytical tools of ANT, and sociology in general, are not very well equipped to deal with such things. It is no coincidence then that the articles assembled here do not give an account of disasters as wholes but of what follows before and after. Temporalization of punctual events is the analytical strategy of choice, but we can legitimately ask, whether this does not miss the very object of analysis. In that sense, a true sociology of disasters still remains to be written. Based on the two central movements in the sociology of disasters, described above, the articles in this volume adopt different angles in analyzing disasters. The articles collected here are attempts to look at how disasters reconceptualize politics and how politics reconceptualizes disasters. Thereby they engage in various kinds of symmetry (Law 2003). By symmetry it is implied that the articles shy away from settling too quickly for one side of any hot or strong dichotomy: whether it is truth or falsehood, political or scientific explanations, the attempt at explanation or the attribution of blame (Potthast 2007). Symmetrical approaches rather take as their starting point to inquire how attributions to one side of various distinctions are empirically accomplished: why and when are people blamed or systems explained? When are scientific or political accounts preferred? When are situations explained with symbols and meaning and when with materiality? However, independently of such symmetries, the authors in this collection begin from different starting points and it is therefore worthwhile to point out how these starting points relate to disasters and politics. The following pages thus try to analytically grasp what it means to start with politics or disasters as the vantage point of analysis. This also allows us to situate the contributions in this book within a wider literature on these issues, including some vantage points not covered. Starting from either disasters or politics produces different accounts of both of these concepts with quite different political solutions, even if these remain often implicit. To sketch these options then allows us to also better understand the underlying conceptions of disasters and politics, through a comparison with some alternatives not taken and not covered in this book. Disasters and politics may be conceived in the two following analytical ways: first, as "disasters producing politics" and second, as "politics producing disasters". In the former case, disasters are relevant because they are productive. The disaster itself is noteworthy for its capacity to produce a particular kind of politics. The latter focuses on the problematic role of politics to produce disasters. From this point of view, it is politics itself, as a mode of ordering the world that produces disasters for its own purposes and according to its own rules. Apart from asking how these approaches conceptualize the relationship of disasters and politics, further questions follow: What are their aims of explaining or changing the world? How do they distribute power and blame in the world among actors? Do they seek to distribute it among many actors, or attribute it to one? How do they take into account "nontraditional" actors, such as lay people or nature? How do they distribute an empirical focus between these various actors? --- Disasters as Producing Politics There are at least three versions of "disasters as producing politics" with changing levels of force attributed to disasters. First, there is an approach, which could be termed disasters as prime empirical sites to understand politics. This approach is not particularly attentive to disasters as ontological events, but rather starts from empirical practicalities: disasters, it turns out, are particularly good empirical sites for understanding politics. This approach does not necessarily depart from established sociological research. It also does not necessarily theorize disasters, but takes them for granted as events. What this strand does understand, and historically, has been early to grasp, is that disasters are prime events for understanding politics, simply because, empirically, all kinds of sociologically interesting things happen, in the same way as ethnomethodology understood that in the collapse of interaction sociologically interesting things happen. In the words of Hoffmann and Oliver-Smith: disasters "unmask the nature of society's social structure" (Oliver-Smith 2002, p.9), echoed by Petersen in this volume when she writes that disasters "are messy times when norms … fail" and "make it possible to analytically denaturalize and examine these practices that create norms" (page 5 of manuscript). This insight is paralleled by the idea in technology studies to study accidents and breakdown to understand technology in use (Wynne 1988). According to this view, disasters change not society, but the work of the sociologist: they decompose what is usually difficult to analyze. Disasters are primarily a welcome methodological tool. Considering disasters as material events is different from the first perspective, as it takes its guidance from Science and Technology Studies (STS) and Actor Network Theory (ANT) to analyse disasters as events in themselves. This approach focuses on disasters as events, but unlike the first approach, does not leave disasters intact, instead disassembling them into their constituent parts. A disaster, as a rupturing event, then, does not rupture a social system, but is produced as an event (also see the conclusion by Michael). Historically, this research strand follows the shift from religious to scientific explanations of disasters. If disasters are not punishments by the gods, but natural events, then the naturalness of the events can be analysed. Measuring the location, strength, likelihood and damage of possible or previous floods, earthquakes or nuclear strikes is a scientific problem, for which different solutions This approach takes a different route to the first with regard to the way in which the empirical focus is distributed. The first attempt accepts disasters as big, single events that pose a problem for society and politics. The focus of analysis becomes the political response, its actors and organisations and the decisions they take to answer to the event. The latter breaks the disaster apart: the question becomes rather when and how 6 a disaster as a unitary event comes into being. The standard STS answer is that disasters are a result of techno-scientific processes, rather than natural or political. The analysis may extend into politics. The focus of this approach is to disassemble a disaster and turn it into a problem: there are not hurricanes as disasters in themselves, but techno-scientific processes that produce hurricanes, floods, or nuclear accidents -both as events themselves and as accounts of these events. The naturalness of (natural) disasters gets bracketed, not just because political processes are guilty of producing disasters in the first place, but also because science and technology in themselves are not taken as simply recording the occurrence of disasters, but producing them. This is not to blame science and technology in an anti-modernist impulse, as the environmental movement is prone to do, but to accept both that the very materiality of social 6 See below the section on "Politics as producing disasters as risks", for a discussion of temporality, and particularly how disasters have effects before they happen, qua risk analysis and preparedness. disruption is co-produced by science and technology and that there is no way to account for such material disruption without the help of science and technology. For such an analysis there are thus two levels. First, to study how modern science and technology produces disasters as material events. This may include a study of the building technologies of dams, cars, space shuttles, or of buildings, or, on a broader scale, of ecological change and how such technological advances in themselves create disasters. Second, it is about studying how scientists account for risks and for existing disasters. What are the scientific assumptions, theories and descriptions for distributing blame between levees, engineers and political decision makers in practice? Disaster as cosmopolitics is a combination of the two former approaches. Disaster as cosmopolitics uses disasters to understand how the world is reorganized on multiple levels through and after disasters. From the viewpoint of cosmopolitics a disaster recomposes the world on every level. Cosmopolitics asks what the world is composed of, who is recognized as a legitimate actor (Farias) and what capacities these actors have (Tironi). The "who" implies not only distributions of decisions among scientific experts and policymakers, but also among different entities, such as tsunamis, birds and measurements, or: actants in ANT terminology. Cosmopolitics then ideally does not disassemble politics or disasters but observes the assembly of worlds, with politics and disasters both constituting events within this world. Disasters are particularly amenable to cosmopolitics, as they unravel the foundations and processes of composing the world, and may therefore offer a place "in which the cry of fright or the murmur of the idiot" can be heard (Stengers 2005). One may remember here the movie "Train de Vie" by Radu Mihaileanu, in which a village of Romanian Jews, hearing of the oncoming holocaust, entrusts itself to the idea of the village idiot: they charter a train, half of the village dresses as Nazis and "deports" the other half and they all drive west, through enemy lines into freedom, duping the real Nazis into believing they are fellow Nazis. The looming disaster, and the hopelessness of the situation literally puts the world at stake, making the proposition of the village idiot one worth taking into consideration. The analytical difficulty of a cosmopolitical approach then is how to juggle the assembly and disassembly of worlds. While the two former approaches can each drill in a single direction and probe the composition of either disasters or political processes, the problem of cosmopolitical approaches is that their field of inquiry and analytical focus is potentially unlimited: who or what should be included in the analysis, and to what extent? This becomes a particular problem if cosmopolitics is conceived as a "positive" form of analysis, that looks into the composition of worlds, and not just the decomposition, into an attempt to ask for new forms of disaster planning (Latour 2007 and see Farias, this volume). --- Politics as Producing Disasters The first, and probably most prominent, version of politics producing disasters is the notion of the state of exception or state of emergency. The state of exception is primarily a legal and technical concept that was given originally political prominence by Carl Schmitt (2005), and more recently through the writings of Giorgio Agamben (2005). While none of the articles in this volume are concerned with state of emergency directly, it is a crucial concept to think about the relationship between disasters and politics, because it highlights the political decisions behind what counts as a disaster from the viewpoint of a state. For Schmitt, to proclaim a state of exception is a sign of sovereignty. But the argument can be turned around. Through the lens of the state of exception -but also "smaller" decisions of the state to act in cases of disasters -it becomes apparent that a disaster, for politics, is not an event out there, but a decision to be taken with repercussions for state action and the state's relation to the population. A disaster in this version is an event outside the state, considered as an organisation, but (usually) within its territory, 7 and which the state uses to do something it could not do without a disaster: change laws, make experts produce reports, send recovery organisations (see Easthope and Mort), and control the movements of people and things (Ellis). The Neo-Foucauldian outlook of Agamben and his followers have pointed out in a critical model the ways that states use the state of emergency to impose new forms of politics on the population. The argument implies that the state of emergency is usually a trick to enforce stricter control of the population, a new biopolitics that would not be possible in normal circumstances. But different from Agamben's focus, what matters here more is not the problem of these extensions of state control, but the way how disasters are used to produce these extensions. In a state of emergency, what matters is that disasters become a resource to justify whatever the state of emergency proclaims. This is a different take from the Foucauldian route Agamben and others take. It focuses not so much on the fact that a state of emergency creates an exception to the law within the law, but rather how the state relates to disasters through a state of emergency. For politics the problem then is to show and prove that its solutions follow from, and are connected to, this external event. While the disaster itself is of no great interest in this perspective, the legal and political processes to connect to the events are. How is it that democratic governments use democratic powers to strip the population or individuals of the very rights that democracy grants them? What is the (discursive) power of a terrorist attack or an earthquake fulfils in these strategies? Where the state of exception takes disasters as starting point, the second version of politics as producing disasters shifts to focus on the risk of the disaster, prior to its occurrence. It is one of the most notable features of modern states that they develop all kinds of theories and 7 However, this does not need to be so: After Chernobyl and Fukushima, various pandemics, and also after 9/11 many states embarked on various paths of disaster preparedness, even if their territory was not directly affected. practices to imagine, calculate and protect against future disasters. The terms risk and preparedness have come to embody these practices (Anderson 2011;Lakoff & Collier 2010). To focus on risk and preparedness implies to shift the focus away from actual disasters: risk and preparedness are both concepts that try to deal with disasters before they happen. It is constitutive of both of these terms that they deal with the unknown. They express the fact that various actors, as in the case of a state of exception, use disasters to act in the here and now, assuming that these actions will change the course of eventual disasters. Studies that analyse risk and preparedness, then, are not so much studies of disasters as material events, but studies of how disasters produce effects before they even happen. In the case of risks, such effects are mostly of the calculative sort, in the case of preparedness it ranges from exercises, to food larders (Collet 2010) and bunkers (see Deville et al.). Studies of risk and preparedness are very much studies of dealing with the time of disasters. Like the precautionary principle (Dupuy & Grinbaum 2005) or prevention (Ewald 1986), risk and preparedness move the time of action before the event, and since they are aimed at undoing or at least alleviating the event itself, and nobody knows when an event will happen, they decouple it from the event. The centre of analysis becomes the imagination of the disaster and the consequences various actors derive from these imaginations. Politics becomes a mediator between the imagination and the practices derived from it. As in the cosmopolitical approach, such an analysis is very much an analysis of how we want to live, how we want to compose the world and what we imagine the world is and should be composed of. But rather than looking at how actual disasters recompose the world, this is about how the expectations of disasters recompose the world. Politically speaking, the problem of risk and preparedness is more difficult and worrisome than post-disaster intervention since the historical basis for action is unknown. While disaster as cosmopolitics builds on some known events and seeks to rebuild a community out of it, preparedness needs to imagine these very events (Weszkalnys). 8 The final approach analyses politics itself as (producing) a disaster. While the former two approaches take politics as answering actual or eventual disasters, politics as itself a disaster assumes that the disaster is an effect of political decisions. 9 As with Foucauldian studies of the state of emergency, such studies assume that disasters are not events beyond political control, but instead are produced by politics in the first place. Underpinning these studies is very much a distrust of the notion of "natural" or "technical" disaster. Rather than taking the disasters as the starting point of analysis, they take the political as the starting point in the production of disasters. They operate from a critical perspective, which seeks to re-orient the blame question and de-neutralize it through sociological analysis. By putting political processes centre stage, and very often concentrating on a particular range of political actors (such as elected politicians and government office holders), disasters become thoroughly politicized. These studies become primarily about actions of political actors, and very often, from a critical angle, about their failure to act before, during and after disasters. Such research is deliberately asymmetrical, since it attempts to point to the fact that it was political decisions that caused a disaster and its subsequent effects. This research is the mirror image of the account given of "politics as producing disasters as risk" since it is about the failure to have created, and prepared for the right risks. "Politics as producing disasters" research points either to the failure of producing the right risks, or, having prepared for the right risks, to have failed to act adequately to address these risks. For example, a large part of the discussion on Hurricane Katrina has focused on the question of whether national and local government assessed the risk of a hurricane adequately, whether the material forms of preparedness, the 8 For a new method how to imagine these events see (Guggenheim et al. forthcoming). 9 This view has been popularized by Naomi Klein in her bestseller "the shock doctrine" (Klein 2007). levees, were adequately designed, and whether FEMA and other government agencies acted adequately after the hurricane. Politics as disaster research also points to the fact that the state and its disaster organisations use disasters for a militarization of response and for taking responsibility out of citizens' hands (Tierney & Bevc 2007). Historically, it follows a trajectory of arguing for a de-militarization of disasters and for preferring the improvisational skills of the population over the organized, bureaucratized and militarized work of state organisations (see Mort and Easthope). --- Overview The special issue is organized in three sections. Each section focuses on a different problem of the relationship between disasters and politics. Its starts with a section "Materials: Ontologies" that circles around the issue how to conceive of disasters once we take seriously the non-human and material nature of disasters. First, Nigel Clark sets out to clarify how the notion of the anthropocene challenges our understanding of politics and disasters. Clark radically seeks to shift agency not simply to the non-human as a general category, but to the earth's climate and its long-term human induced changes. For Clark, the main question is how we can politically understand temporal and spatial processes that far exceed normal sociological concepts of human agency and nation state. In the next article, questions of the redistribution of agency are taken from the biggest scale of the anthropocene to the smallest scale of birds. Israel Rodriguez Gíralt, Francisco Tirado and Manuel Tironi look at a toxic spill in the Doñana National Park in Spain to question the notion of disaster: Rather than being circumscribed in time and space, they show that disasters should be understood as "meshworks". As the authors show, it is the ringing of the birds, and the possibility to trace how they spread toxic spill, that turns the disaster into a meshwork, with birds as moveable and traceable distributors of what was initially a local event. Drawing on the work of Tim Ingold, they argue that disasters are dynamic realities, difficult to localize and always distributed along disparate scales and actors. In their view, disasters have a dual reality, unfolding actually and virtually at once. In the third article, Ignacio Farias uses the example of the failing of the Chilean warning systems to argue that we should analyse disasters not as instances of accidents but as instances of inquiry. For Farias, what is at stake in the case of cosmopolitics is a generalized problem of recognition, as it has been phrased in critical theory: Who recognizes whom as legitimate and irreducible actor? For Farias, the failure of the warning system must be discussed as a failure to recognize tsunamis as actors and based on this first failure, a failure to openly explore the world. In the second part of the book entitled "experiments: governance" we focus on collective political experiments: these articles deal with different ways of deploying heterogeneous technologies for managing disasters, technologies that are in each case contested, challenged and mutable. Hence the section title: disasters enhance uncertainty, yet the technologies aim to stabilise them, but become matters of conflict and experiment. Katrina Petersen in her article "Producing space, tracing authority: Mapping the 2007 San Diego wildfires" takes a look at how technologies of representation produce different kinds of disasters. In the case under discussion, two different kinds of maps produced completely different disasters with different repercussions for how to deal with the fires. The county produced maps, which ended at the borders of the county, whereas those produced by a group of local media and local academic organisations with Google My Map tracked the actual fires. The former aligned with the responsibilities of the state organisations responsible for dealing with the fire, whereas the latter followed those of the population affected by the fires. Petersen's main point here is to highlight that the groups that produce the maps are actually overlapping and have similar interests, but it is the different forms of map production that result in different forms of disasters and how to deal with them. In the next article Manuel Tironi asks to what extent disasters, as radical moments of vital indeterminacy, create extended and iterative forms of political experimentalism. Tironi grounds his argument in the case of Talca, Chile. After the 2010 earthquake, two competing participatory experiments coalesced in Talca. On one side stood the idea that the disaster only unveiled the previous deterioration of the city. This endemic problem should be overcome with a masterplan and the role of the Talquinos would be to evaluate proposals. Against this stand the ideas of Talca con Tod@s, whereby the problem of Talca was not its decay, but its rich history of citizen groups, and its social capital: citizens in this view were engaged, and they were experts. These The third and last section entitled "preparedness: anticipation" focuses on the fact that disasters exist and create political (re)arrangements without even happening. Disasters are politically powerful and generative even when absent, looming, or simply being invoked. The section starts with an articleby Ryan Ellis on "Creating a Secure Network: The 2001 Anthrax Attacks and the Transformation of Postal Security." Ellis looks at how the anthrax attacks led to a reconfiguration of the postal network, which eventually favoured large commercial mailers. For Ellis, the anthrax attacks were just spikes in a story which experts had seen coming. The attacks were not so much a disaster, as the events which led to a political reorganisation of infrastructure: re-enforcing problematic power asymmetries by distributing costs unequally across different categories of users, and engaging in the policing of labor in an effort to aid the shift toward temporary labor. Next, Joe Deville, Michael Guggenheim and Zuzana Hrdlickova look at shelters as materialized forms of preparedness. Drawing on the notion of concrete governmentality, they highlight how shelters, as particularly stubborn and stable forms of preparedness, produce a number of surprising effects. First, they compose preparedness by changing the relationship between citizens and the state. They also decompose preparedness by falling out of use. Lastly, they recompose preparedness because they remain, while disaster experts need to find new disasters to justify their existence. In Deville et al's. view, it is not so much the disaster itself, but particular kinds of preparedness that create different relationships between citizens and the state. In the last article entitled "Anticipating oil: The temporal politics of disasteryet-to-come" Gisa Weszkalnys looks at an extreme case of preparedness and what disasters could be. She looks at how the prospect of oil in São Tomé and Príncipe is dealt with as a disaster yet to come. Her interpretation closes a circle by linking back to the problem of anthropocene in Clark's opening article. Weszkalnys asks when a disaster starts and she presents a sliding scale, from the timescales of geology to theories of resource curse and ethnographic observation of how the people in São Tomé and Príncipe react to the expectation of oil and their attendant ontological conversions, from crude oil to commodity into money. Finally, in the afterword, Mike Michael complements this introduction by looking at the relationship of disasters and politics through the lens of temporality. For Michael, what the diverse articles do is to tie disasters into knots: they turn past experiences into preparations for the future and they turn these preparations into actual events. These articles draw in various ways on the notion of disasters as politics and politics as disasters. As the section titles make clear, some focus on temporal aspects, some on material and others on those of governance. Where they all converge is to turn the relationship between disasters and politics into a problem. The problem we face is not how to react to existing disasters. The problem we face is how to live in this world knowing that we produce innumerable disasters, which ones we want to prepare for, and how we want to live together in the wake of acknowledging these disasters. These articles are but a first step to answering these questions.

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Legalizing illegalities? Land titling and land tenure security in informal settlements

This study investigated how land rights formalization had a ected land tenure security among landowners in two informal settlements of Lusaka and Chongwe districts, Zambia. It explored how social norms on land inheritance, decision making over land, marital trust and land related conflicts had been a ected by the changed nature of land rights. Data was collected through a questionnaire survey of all the households that had obtained title deeds at the time of the survey, two -in-focus group discussions and four key informant interviews. Results suggest that land tenure security is now a reality for residents that hitherto lived under constant threat of eviction. Landowners have benefitted from the formalization initiative through land laws and local norms that allow equitable access to land. Land rights formalization has curtailed land rights for secondary claimants such as extended family members, in preference for man, spouse and biological children. A sense of ownership undisputedly increased for men and women in the two study sites. About % of the respondents in both study sites indicated that formalization of land rights had not resulted in family conflicts. At least one-third from both sites reported an increase in love and trust between spouses after land rights formalization. About half of the respondents reported that no change in decision-making authority had occurred for men while % reported an increase. Formalizing land rights in informal settlements has entailed legalizing illegalities as regulations on plot boundaries are set aside by the state to achieve its aspirations of providing land tenure security to poor urbanites who would not otherwise have recourse to legal or regularized land. We recommend that caution be taken in promoting what is unarguably a pro-poor initiative to ensure that such initiatives should not incentivize future land encroachments.

Although unplanned settlements grew in density and number after Zambia's independence from British colonial rule in 1964, such settlements were a pre-independence phenomenon (Hansen, 1982;Makumba, 2019). Their origins can be traced to colonial urban settlement policies, which forced poor urban settlers to reside in marginal areas of the city that had not been planned as residential areas by city authorities (Nchito, 2007). New residents simply moved into the settlement areas and claimed parcels of land by constructing low-cost housing and other small structures such as shops and bars. The housing structures were relatively cheaper to rent and thus became a pull factor to many rural immigrants into the city looking for low-cost housing. With time, the population of these unplanned settlements expanded and by the early 2,000s accounted for around seventy per cent of the entire population of Lusaka city and comprised 20% of the city's residential land (UN-Habitat, 2007). Having such a large proportion of the city's inhabitants in unplanned areas has brought about a myriad of socio-economic and environmental challenges. The unplanned settlements occupy and encroach on contested spaces in the city and thus continue to be a source of health, environmental, social and moral problems (Taylor et al., 2015;Msimang, 2017;Muanda et al., 2020). Furthermore, the houses were built without any building authorization by the city municipality as required legally. Zambia's population stands at 19.6 million people with a population density of 26.1 persons per square kilometer (Zambia Statistics Agency, 2022). Although the country's area covers 752,614 square kilometers, only twenty percent (150,522 km 2 ) of the land, translating to about 200,000 land parcels, was fully registered and 600,000 parcels were at various stages of processing as of 2014. The rest (about 80%) was unregistered (Tembo et al., 2018). This entails the vast majority of plots and houses are unregistered, illegal, and potentially resulting in diminished property rights and tenure insecurity. Tenure security refers to the degree of confidence held by people that they will not be arbitrarily deprived of their land rights or of the benefits derived from their land (Knight, 2010;Government of the Republic of Zambia, 2021a,b). Several scholars have observed that informality induces land tenure insecurity and has negative consequences on investments and land resources management (Chirwa, 2008;Ghebrua and Lambrecht, 2017). De Soto (2000) argued that the poor in developing countries fail to turn their land into capital because they lack formal mechanisms for protecting their property rights. Their tenure insecurity acts as a demotivating factor. --- . . Formalization of land rights Formalization of property rights involves the provision of legal representation of property in the form of title deeds, licenses, permits and contracts, all of which must receive official sanction and protection from legitimate national authorities (Benjaminsen et al., 2009). Land rights formalization is argued to be especially beneficial for residents of informal settlements, as the illegal status of such settlements presents a level of precariousness not experienced by other residents, be they in customary areas or formal settlements without documentation for their land. Residents of informal settlements can be evicted legally anytime. Some scholars posit that by formalizing their land rights, residents of informal settlements enhance their land rights claims and tenure security (Sjaastad and Bromley, 1997;Zevenbergen, 2000;Holden and Otsuka, 2014;Wily, 2017). Tenure security is associated with access to credit, stimulating entrepreneurship, provision of services and infrastructure, improved health conditions and the realization of the human right to adequate housing (Jimenez, 1984;de Soto, 1989;De Soto, 2000;Payne, 1997;Smith, 2001;World Bank, 2003;Di Tella et al., 2007;Field, 2007;Durand-Lasserve and Selod, 2009;Reerink and van Gelder, 2010). Furthermore, land rights formalization is theorized to facilitate land market transactions which indirectly leads to higher overall investment in land (Besley, 1995;Place, 2009;Holden et al., 2011;Lemanski, 2011;Ghebru and Holden, 2015). However, the empirical evidence from several countries in sub-Saharan Africa that have implemented a wide range of land formalization initiatives since 2000 reveals mixed results. Despite the numerous espoused benefits arising from titling programs, a variety of challenges impede implementation on a large scale. For instance, developing countries within and beyond sub-Saharan Africa lack the necessary finances and capacity to execute the land formalization process because of the high costs required for land survey, title registration and issuance of title on a large scale (Sjaastad and Bromley, 1997;Toulmin, 2009;Bezu and Holden, 2014;Kim et al., 2019). Hence aid agencies and international financial institutions such as the World Bank, USAID, DFID, the European Union among others have financed formalization processes in some countries (Durand-Lasserve and Selod, 2007). Furthermore, land formalization manifests a gender dimension with women at a greater risk of land tenure insecurity despite de jure equality with respect to land access (Ali et al., 2019). The prevalence of unfavorable customary practices and attitudes that restrict women's control over land resources inhibit fair participation in land formalization programs. For example, in Ethiopia, despite the introduction of progressive land reforms that promote rural women's rights to inherit and own land, discriminatory practices such as restrictions on land ownership continue to persist (Tura, 2014). Similarly, in Malawi's matrilineal societies, though women possess inheritance rights to land, men, be it husbands or uncles, exercise leadership in decision making and control over land, thereby disenfranchising women (Andersson Djurfeldt, 2020). Consequently, as men secure their property rights, those of women risk being undermined (Andersson Djurfeldt, 2020). Further, the landless, women, and orphans may not only be unable to take advantage of formal rights to assets but may find avenues of access effectively closed through the price increases that invariably attend formalization (Benjaminsen et al., 2009). Essentially, a danger inherent in formalization is consolidating existing inequalities (Benjaminsen, 2002;Sjaastad and Cousins, 2008). Urban population growth presents challenges to large scale titling programs by triggering illegalities by wealthier individuals who include local residents, elites, politicians and local leaders in attempts to acquire property. This, however, is at the expense of the relatively poor and marginalized individuals. This high demand for urban property often leads to land conflicts and in some instances land grabbing which often overwhelm local government authorities (Chitonge and Mfune, 2015;Lombard and Rakodi, 2016). Other challenges of large-scale titling include increased perceptions of displacements and tenure insecurity among marginalized individuals, lengthy processes, lack of policies to support titling objectives, failure to achieve intended titling goals and high interests in land by commercial entities (Payne et al., 2009;Lawry et al., 2014;Chitonge and Mfune, 2015;Lombard and Rakodi, 2016;Andersson Djurfeldt, 2020). Some scholars have noted that land rights formalization programs result in heightened insecurity due to displacements, especially among the marginalized groups in society, i.e., the poor and widows (Kyalo and Chiuri, 2010;Andersson Djurfeldt, 2020). For example, in Kenya, the process of converting communal pasture into private plots reinforced male dominance in property ownership as titles were issued to the men, hence increasing inequalities. Further, women lost their access to previously available resources such as livestock and other food products which they previously obtained through communal bargaining processes (Kyalo and Chiuri, 2010;Andersson Djurfeldt and Sircar, 2018). In Zambia, the state embarked on an ambitious National Land Titling Program in 2015. The objectives of the program were to regularize ownership of untitled properties in towns and cities and by so doing, promote security of tenure for property owners on state land, reduce displacements, promote internal security and increase the revenue base and investment in the country and thus contribute to socio-economic development (Government of the Republic of Zambia, 2018; Tembo et al., 2018). During the issuance of the first 92 certificates of title to residents of Madido area in December, 2017, the then minister of the Ministry of Lands and Natural Resources explained that the initiative was motivated by the government's resolve to accelerate social and economic development. This was to be accomplished by regularizing ownership of untitled properties in towns and cities, eradicating inequalities in gaining access to land in order to cater for all, and providing citizens with the impetus for access to credit (Government of the Republic of Zambia, 2018;Ministry of Lands Natural Resources., 2021). The Zambia National Land Titling Program had a target of processing and issuing 300,000 certificates of title to landowners in areas where the program was being piloted by 2018. The Ministry of Land and Natural Resources established a unit specifically to deal with land titling under the National Land Titling Program. This is the National Land Titling Center. Later, it engaged a private company called Medici Land Governance to expand the program. However, reality fell short of aspirations, as program implementers faced challenges characteristic of such initiatives. The challenges included determining land ownership for claimants with incomplete or no documentation, determining property boundaries and upgrading paths to access roads to meet statutory standards. Since private infrastructure had been developed with little or no considerations for building standards, concessions had to be made between demolishing properties that were too close to public roads and those without sufficient space for access roads and providing title security (and its attendant benefits) to poor residents with no other opportunities to own land with secure and enforceable land rights. Arguably, this legalization of illegalities was instrumental to achieving the public good of social-economic development through the provision of legal property rights and all the opportunities this presented. Thus, this study sought to determine how land rights formalization had affected land tenure security among men and women landowners in the pilot areas. Furthermore, it explored how social norms on land inheritance, decision making over land and marital trust had been affected by the changed nature of land rights. Lastly, land conflicts, an indicator of threats to land claims was examined to determine the extent to which the land rights formalization had addressed this threat. Land rights formalization in the two study sites started as part of the national land titling program, an initiative by the state to document all unregistered land in urban areas. Once the initial skepticism and fear of demolition of illegal structures and forcible evictions was over, landowners in the two study sites agreed to participate in the program, and mobilized the initial mandatory payments. The initial payment was ZMW 1,260 (USD73) for Madido and ZMW 625 (USD36) for Bauleni. This covered the survey fees and enabled the program implementers to survey the sites and draw sitemaps. The rest of the payments were to be made in monthly installments of ZMW 100 (USD6) for up to 36 months, for a total of ZMW 4,990 (USD286) in Madido and ZMW 3,747.93 (USD215) in Bauleni. This is about half what landowners spent to acquire title deeds through the normal process. Residents that managed to secure payments early were among the first to receive the title deeds. Better resourced households thus benefitted early in the process. --- . . Conceptual framework for the study The conceptual framework is adapted from Doss and Meinzen-Dick (2018). The adaptation includes the addition of men to the analysis and its application to an urban setting. The framework incorporates four broad areas: the context, threats and opportunities, action arena, and outcomes (Figure 1). The context includes both formal and informal institutions (laws, practices, and norms), socio-economy and history. The threats and opportunities to land rights include the catalysts of change, both those that strengthen and those that weaken tenure security for men and women. The action arena includes both actors and action resources. The actors include every-one who influences land tenure security. The action resources are those resources that different actors can use to seek their preferred outcomes, and include money, education, networks and social status. Finally, men's and women's land tenure security is the outcome of interest, and feeds back to shape the context for men and women's land rights in the future. Land tenure security has three components, (i) Completeness of the bundle of rights (ii) Duration, and (iii) Robustness. Completeness of the bundle of rights looks at the extent to which one person or persons hold the various rights. Duration is about whether the rights are held for a short or long-term and /or if the length of time is known. Robustness is an examination of whether the rights are known by the holders, accepted by the community, and are enforceable. --- FIGURE Conceptual framework of factors a ecting women and men's land tenure security [adapted from (Doss and Meinzen-Dick, )]. The rest of the paper is organized as follows. In the next section, the paper describes the study sites and the study methodology. Section 3 presents and discusses the empirical results. The last section concludes the paper and draws out policy implications. . Materials and methods --- . . Study context and background Fieldwork was conducted from two study sites, Bauleni and Madido residential areas (Figure 2) between August and October 2020. The two areas were selected as study sites as they were pilot areas for the National Land Titling Program in the Lusaka city region (www.mlnr.gov.zm) and thus were ideal for an examination of program outcomes. The two study sites are located in Lusaka and Chongwe districts respectively. Of the total area covered by the country (752,614 square kilometers), Bauleni covers an area of about 1.533 square kilometers and Madido about 0.891 square kilometers. The areas experience a humid subtropical climate, and are overlain on uneven depth of folded and faulted schist. Bauleni had a population of 64,000 (Tidwell et al., 2019) while Madido's was at 210, 672 in 2010. Bauleni and Madido have 3,697 and 2,109 households respectively. Bauleni consists of low-income and middle-income households. Most of its residents are in informal employment. The situation is different for Madido with most of its residents in formal employment, and a large majority of them are middle income households. The genesis of the two areas is very different (Sommerville and Tembo, 2019). Bauleni started in the 1970s as a small unauthorized squatter settlement formed by laborers who worked in nearby commercial farms (Cheyeka et al., 2014). With time, its population grew. It was legalized in 1998. Implementation of the National Land Titling Program started in Bauleni in 2018. Madido-also known as Chelstone Extension to the residentsis located on land that previously belonged to a public agricultural college, the Natural Resource Development College. Around 2006, local party officials of the then ruling political party, the Movement for Multi-Party Democracy encroached on the land, illegally demarcated it into land parcels and sold them to interested persons. The population quickly grew and Madido became an informal settlement. The Ministry of Lands subsequently canceled the college's land ownership rights before offering them to the illegal settlers and has since regularized their ownership through the issuance of title deeds (Personal communication, Key informant, October 2020). Implementation of the National Land Titling Program started in Madido 2017 (Sagashya and Tembo, 2022). --- . . Data collection An explanatory sequential mixed methods approach was employed (Bryman, 2012). In order to come up with a sampling frame of households that had obtained title deeds, a mapping exercise was conducted. Every household in the two study sites was visited and a short survey conducted to establish whether it had participated in the land titling program, whether title deeds had been obtained, and if so when. The mapping exercise was conducted with the help of community members that were widely known and well regarded. For Bauleni, it was with the participation of a long-term female resident whose family was the first to settle in the area. The resident was identified with assistance from the local authority officers based at the Lusaka City Council office in the area. The resident had first-hand knowledge of almost all the housing properties and their owners. She was well known in the area as an executive member of several local development initiatives. She was deputized by two females familiar with the area through their parttime work with Lusaka City Council as distributors of water bills in the area. In Madido, the field team was assisted in the mapping exercise by two male residents who had been the central figures as they had been actively involved in the illegal demarcation and subsequent sale of land parcels. Further, When the National Land Titling Program commenced, the two were recruited as resource persons to explain the program to community members and to encourage the community members to participate in the program. The two were thus trusted by the residents, who were otherwise wary of strangers asking about land matters, given the illegal genesis of the residential area. After the mapping exercise, all the households that had title deeds at the time of the survey were interviewed. These were 54 from Bauleni and 248 from Madido. The survey commenced with a pilot study to test the data collection instrument. During piloting, each of the four research assistants interviewed two respondents each, a male and a female from among the households with title deeds. Thus, a total of eight interviews were conducted during the pilot study. The pilot study was conducted within a day, at the end of which a debriefing session was held. Some questions in the questionnaire were modified, while a few were removed as they were found to be redundant, and some new ones were added after the feedback from the pilot interviews. The eight interviewees from the pilot study were excluded from the survey. After the questionnaire survey, two 3-in-1 focus group discussions (FGDs) (March et al., 1999;Umar, 2021) were conducted in the two study sites. The discussants were recruited from the pool of respondents, on the basis of having extensive knowledge of the land titling process. Each of the four enumerators recommended two male, and two female discussants from the batch of respondents each had interviewed from the two study sites. The discussions were held in two phases. In the first phase, discussions were conducted with men and women separately. The men's FGDs were facilitated by a male researcher while the women's FGDs were facilitated by a female researcher. This initial separation into single gender groups was to minimize any influence of unequal gender relations such as the social and cultural superiority of men to women that could otherwise limit participation in the discussions based on gender norms. The men and women's groups were later brought together in a plenary discussion and asked to present summaries of their group deliberations. The plenary phase of the FGDs resulted in co-production of knowledge by men and women discussants through the detailed discussions that ensued from the single gender group presentations. One member of the research team expertly facilitated the discussion while another observed the proceedings and took notes. The facilitator alternated which group shared its results first. Both facilitator and observer paid attention to the verbal reactions and non-verbal communication of the women to the men's answers, and vice versa. These included voice tone, facial expressions and demeanor. These cues were used to guide the facilitator on whether or not there were disagreements between the two groups, and to probe appropriately (Tecau and Tescasiu, 2015). Four (4) key informants were interviewed. These included a representative from the private entity recruited by the state to implement the National Titling Program, and a spatial planner from the Ministry of Local Government and Housing, with extensive experience in planning who had been seconded to the National Land Titling Program. Others were two key informants with extensive knowledge on land related matters in the two study sites. They were both long term residents of their respective informal settlements and their families had been important players in the establishing of the illegal settlements. Both were also involved in the National Land Titling Program as community representatives. This role entailed communicating community concerns to the government, providing information on undocumented land parcels to the state, and updating community members on program activities. Free, prior and informed consent (Hanna and Vanclay, 2013) was verbally obtained from all respondents and key informants, all of whom were adults aged over 18 years of age. Permission to record the focus group discussions using digital recorders was sought from the discussants and granted for all the sessions. Approval to conduct the research was granted by ERES Converge IRB, a nationally accredited research ethics clearance organization. --- . . Data analysis The questionnaire survey data was entered into Microsoft Excel sheets. After the data entry was completed, an accuracy check was conducted by randomly selecting ten percent of the completed questionnaires and comparing them to the data entered about them. The data was then copied to Minitab 18 (Minitab Inc, 2017) and analyzed using basic descriptive statistics such as frequencies, means, standard deviation and two sample Independent T-test. The T-test was used to test the hypothesis that male household heads were older than their female counterparts. The recordings of the FGDs and key informant interviews were transcribed and categorized into themes based on research questions. The themes were sense of tenure security; sense of ownership; decision-making; land inheritance, land related family conflicts; love and trust and threats and opportunities presented by land rights formalization. --- . Results and discussion Overall, the average age of household heads was 56.4+ (s = 9.8) and 48.5(s = 9.1) in Bauleni and Madido respectively. When disaggregated by the gender of the household head, the data reveals that around 20% of the interviewed households were headed by females; the average age of male household heads in Madido was lower than for the female heads (p < 0.005) while in Bauleni, there was no statistically significant difference (p < 0.05) in the mean ages of the male and female household heads. Almost half (46%) of the respondents reported the housing property owned by a married male household head while a quarter (25.2%) reported joint ownership by husband and wife. Joint ownership by husband and wife entails that both the couple's names are included on the title. The rest reported ownership by female headed households (16.3%) and by wives (11.4%). Female household heads are unmarried (divorced, widowed or single). There were no unmarried male housing property owners in the sample. When disaggregated by study site, the general trend was the same with a few nuances; About 49% and 40% of the housing property owners were male household heads in Madido and Bauleni respectively. Joint ownership was reported in 36% and 23% of the housing properties in Bauleni and Madido respectively. Housing property owned by the wife comprised about 12% of the cases in both study sites, while about 15% and 10% of the housing properties were owned by female household heads. Family owned housing was the least common with only 2% of the properties in Bauleni and 6% in Madido. The rest of this section presents and discusses the findings based on themes derived from the research questions and those emerging from the data collected. --- . . Land tenure security is an outcome of land rights formalization A large majority of the respondents in both study sites thought that women's sense of tenure security had greatly increased (82% for Bauleni and 91% for Madido), while a small percentage (8% for Bauleni and 2% for Madido) thought the increase was only moderate (Figure 3). If feelings of tenure security increase greatly, it means someone feels that it is highly unlikely that someone can arbitrarily expropriate their land. Similarly, if an owner's sense of security of tenure is moderate, it means they feel that it is not so likely that anyone can dispossess them of their property arbitrarily although they may have some lingering feeling that someone might actually do so. The women FGDs in Bauleni revealed that title deeds were "witnesses" or testimony to land ownership and that in the future no one would take the land away from them or their children because the title deeds would serve as proof of ownership. Similar views were expressed by the women FGDs from Madido. In the words of one focus group discussant, "before we got title deeds, we were very worried. Now we are safe, after getting the title deeds. Now we can expand our houses. We are very secure now." These views are shared by women that jointly owned their land with their spouses and those from households where only the male household head is included on the title. Noteworthy is that even married women whose names are not included on the title deeds as joint owners enjoy tenure security because of the provisions of the Intestate Act (Chapter 59 of the Laws of Zambia) of 1989 which protects the rights of surviving spouses and children to inherit property. Enhanced tenure security for women after land rights formalization has been reported elsewhere in sub-Saharan Africa. Some interventions in Uganda (Cherchi et al., 2019), Ethiopia (Bezabih et al., 2016) and Nepal (Mishra and Sam, 2016) showed --- FIGURE Sense of tenure security after land titling by women and men in Bauleni and Madido. a notable increase in women's tenure security than was previously held. Such cases notwithstanding, Viña (2020) urges caution. She posits that a woman having title deeds is not a sufficient condition for tenure security as titling may not necessarily translate to decision making about and deriving benefits from the land. Over 80% of the respondents in both sites believed that men's sense of tenure security had greatly increased after land titling (Figure 3). During the FGDs with men in Bauleni, a contrast was made between tenure security before and after land titling. The men unanimously agreed that before titling, anyone could lay claims on their land, but after titling, this was not possible. They all felt very secure post-titling. Their counterparts from Madido observed that before titling, they had been afraid that their houses could be demolished. The state did not provide any public services to the area because it was considered an illegal settlement. But after titling, "the government has brought water, sewerage and roads. We are proud now. There is just that sense of pride that this is my property", one of the discussants narrated. These sentiments suggest that land rights offered by title deeds are known to the rights holders and are enforceable. The rights owners knew that their title deeds, and the rights guaranteed therein, were valid for 99 years. This applies for both men and women land rights holders. A large majority of the respondents reported increases in the sense of ownership for both men and women in both study sites (Figure 4) while a small minority indicated that there was a moderate increase of sense of ownership. The stronger sense of ownership was premised on landowners in both Bauleni and Madido having exclusive rights and control over the land parcels they owned. This was in line with the results from the FGDs. The focus group discussants from both Madido and Bauleni (men and women's groups) observed that the title deeds have accorded them ownership rights, which they never had before the issuance of title deeds. They narrated that prior to land rights formalization; anyone could come at any point and grab the land from them. However, with the title deeds issued to them, all focus group discussants confirmed having full ownership rights. They believed that no entity could grab land from them or demolish their properties without compensation. The focus group discussants further noted that land rights formalization has resulted in their empowerment. That is, they have powers to put up and extend immovable structures, because they have secure land rights to their land parcels. Clearly, landowners are able to enforce their rights when under threat as the rights have been legitimized by the state. A similar study from Tanzania conducted by Parsa et al. (2011) reported that most residents with property licenses felt that the municipality was unlikely to carry out demolitions and if conducted they had a better chance of being compensated by the authority. Having addressed tenure security, the paper proceeds to explore the context under which men and women have gained tenure security and delve into which land rights claimants are able to assert their claims to the secured land rights, how they assert their claims and the conditions under which they do so. --- . . The context In this section, the paper presents results on social norms obtaining around property in the context of titling. Social norms are defined as "rules of action shared by people in a given society or group; they define what is considered normal and acceptable behavior for the members of that group" (Cislaghi and Leise, 2020). Social norms change from time to time. It would be interesting to know how titling affects some of the social norms in the study sites. --- . . . Social norms on inheritance A large proportion (67% and 73%) of the respondents in Bauleni and Madido respectively, and 74% overall claimed that there was an increase in the inheritance rights to property for daughters due to land rights formalization (Figure 5). A minority of the respondents (<20%) indicated that there was no change in inheritance rights to property for daughters post land rights formalization (Figure 5). In the FGDs debate on land rights inheritance by daughters and sons, some discussants maintained that it was not the best idea to put daughters' names on title deeds because once they got married, they could let their husband take over the property to the detriment of the daughter's siblings. In the words of one male discussant from Bauleni, "For daughters, they can get married and let the man control the property." Conversely, another discussant from the same group argued for land rights inheritance by daughters, "It is better for a girl child to get inheritance because as the boy gets married and dies, his widow will inherit the property." This sentiment was echoed by discussants from Madido. One discussant elaborated the following: Girl child should be on a title deed. Even when the girl child gets married and it happens that the marriage does not work out, the daughter can go back to the house unlike the boy child because when he marries and dies, his wife will inherit the house [Focus Group Discussion, Madido, Zambia 20th October 2020]. Nancekivell et al. (2013) shared this view when they contended that a girl child should be on title because even if she were to get married, she could still look after the property and in cases where the marriage failed to work out, she could go back to the property. Almost 90% of the respondents perceived rights to inherit housing property to have increased due to land rights formalization (Figure 6). During focus group discussions, a lot of skepticism was expressed about sons inheriting property rights to land. The discussants averred that sons could sell the land and chase their siblings. This excerpt typifies this sentiment among Bauleni discussants, "It is best not to put [include] sons on a title because they can sell the land and chase their siblings." A similar view from Madido, "A son may even let the wife control and chase away siblings". The focus group discussants from Madido and Bauleni residential areas expressed strong preferences for including all the children on the title deeds so that no single child could change the land ownership. Half of the respondents from Bauleni and forty percent from Madido claimed that there was no change in the inheritance rights to property for nephews after land rights formalization (Figure 7). About ten percent of the respondents in both areas thought there had been an increase while the rest viewed the rights to have decreased. Similar sentiments were expressed for nieces (Figure 8). The explanations for these results were provided during the focus group discussions. The discussants contended that adding nephews and nieces' names on title deeds was problematic because their (the nephews and nieces) parents could later claim the land parcels as theirs. The following verbatim represent this view from a Bauleni discussant, "Putting names of nephews or nieces may result in problems because their parents may come to make claims" Both respondents and focus group discussants noted that only biological children had inheritance rights and should be the only ones included as land rights claimants on title deeds, besides the parents. This norm was a measure to prevent land claims from extended family members. Either one name or more can be on a title deed. The key beneficiaries are the children, biological children, and no one can claim the land from them [Focus group discussant, Madido, Zambia, 20th October, 2020]. Gibson and Walrath (1947) in Iowa of the United States of America also made this observation when they noted that the inheritance of property rights by nephews such as inheriting the house, farmland or plot following the death of the owner of the property was perceived negatively. Normally, when nephews inherit property rights, it is very likely that their biological parents may claim it is their property when in the actual sense it is not (Gibson and Walrath, 1947). In Rwanda, the land registration and titling program, implemented alongside the 1999 Law of Succession, and the National Land policy of 2004 resulted in; (i) increased inheritance rights of daughters similar to sons, (ii) permanent land rights for divorced or widowed women, and (iii) increased ability to resist restrictive customary practices, e.g. polygamy, where wives property rights were not recognized by the state (Ansoms and Holvoet, 2008;Daley et al., 2010;Santos et al., 2014;Kagaba, 2015). --- . . . Decision-making authority by men and women household heads Decision-making is an indicator of control. Being able to exercise agency over what happens to land suggests an acceptance as part (owner) with rights and /or interest in the property. Decision making over land is influenced by social norms over who is considered a legitimate decision maker. In both study sites, about 32% of the women respondents noted that the acquisition of land titles had greatly increased the decision-making authority of land owners while 15% noted a moderate increase (Figure 9). For the men, 22% perceived decision making authority to have greatly increased among titled land owners, while 17% thought the increase was moderate, in both study sites. About 5% of the male respondents in both study sites asserted that decision making had moderately decreased while <1% of the women thought so, in both study sites (Figure 9). Close to half (45 %) of all respondents did not attribute any changes in the decision-making authority to acquisition of title deeds. Despite few respondents citing increased decision-making authority, FGDs revealed that the acquisition of title deeds facilitates for men and women household heads to acquire financial loans using titles as collateral and enables them to decide who should inherit their property. Further, discussants noted that title deeds provide men and women household heads legal ownership and consequently authority to invest in their properties thereby increasing the monetary worth of the properties. Land formalization programs implemented across sub-Saharan Africa show positive outcomes in securing property rights and upholding equality across both genders. In Rwanda, equal decision-making rights between formally registered spouses to alienate property and rights to earn independent incomes through private property were reported (Kagaba, 2015). Agarwal and Panda (2007) noted that establishing women's property rights empowers them with decision making authority and enhanced control over resources and ensures the welfare of their households. Titling, however, must be supplemented with ancillary empowering interventions for women (see Monterroso et al., 2019). As Viña (2020) avers, focusing on titling alone "without addressing the persistent barriers faced by women, not only misses the mark, but could also end up being counterproductive" Some scholars have argued that the presence of a title does not guarantee access to financial credit to residents, i.e., men and women especially in low-income areas citing low value of most properties as well as unwillingness by financial institutions to offer loans (Rakodi, 2014). However, these negative outcomes are unlikely to apply to residents of our study sites as they are in the city and title is for individualized housing units unlike the case of rural communal pasture or bargaining. --- . . Threats and opportunities presented by land rights formalization Focus group discussants from both study sites articulated that tenure insecurity among informal settlement landowners without formalized land rights is high, with evictions and demolitions pervasive threats. They asserted that the land reforms to regularize land ownership presents an opportunity for informal area residents to secure their land rights and make them enforceable and easily transferable. Scholars have observed that land titling is not without threats. Informal settlements expand unexpectedly and ultimately lead to a change in the use of space and structure of activities, in ways not in conformity with land use planning and legal requirements and may cause contradictions and conflicts (Dadashpoor and Ahani, 2019). --- . . Land conflicts, love and trust among family members Intra-family tensions and contestations are reported over bequest, usage, or sharing of land (see Wong, 1998;Kouamé, 2011;Gyapong, 2021). As Wong notes, disputes among spouses or family members can arise from deteriorating family relations such as a marriage breakdown or from third parties making counterclaims to the property. This study therefore sought to find out, in part, how land tilting had affected internal family relations in terms of conflicts related to land. The conflicts manifested in a number of ways in the two study sites including verbal quarrels and cutting of family ties. Just over half (54%) of the respondents in Bauleni indicated that land rights formalization had not influenced landrelated family conflicts. This is compared to below half (43.5%) of Madido respondents. Interestingly, only <10% (9%) of respondents in Bauleni indicated a decrease in land related conflicts among family members while about a third (31%) of Madido said land related family conflicts had decreased. In both study sites, <10% reported that land related family conflicts had increased following titling; seven and eight per cent for Bauleni and Madido respectively. On whether land related family conflicts had increased moderately only 11% and 10% responded in the affirmative for Bauleni and Madido, respectively. Overall, 18 and 19% of respondents from Bauleni and Madido, respectively, reported a moderate or great increase in land related family conflict following titling of their land. While tenure for agricultural land for women has been associated with women empowerment and reduced gender-based violence in India, the scarcity of land has resulted in tensions between spouses in Kenya over prioritization of consumption crops or commercial crops (Andersson Djurfeldt, 2020). According to Rukema and Khan (2019), family conflicts in Rwanda relating to land are sparked by polygamy with competing inheritance claims from the various wives and their children. However, in Zambia, polygamy is illegal under statutory law and though legal under customary law, polygamy is rare in urban areas. In both Madido and Bauleni, no polygamous marriage was reported by respondents. The other causes of land-related conflicts Rukema and Khan (2019) cite are illiteracy and ignorance of the law empowering women with land ownership. Our study revealed a case where the husband had deserted the wife and children to go and live with another woman carrying the land title with him. One woman in Bauleni, a teacher by profession, reported contributing toward the land title. However, the husband had been elusive, giving contradictory claims that he had received the title and denying this when contacted by the wife during the interview. Love and trust between spouses can potentially be affected by titling with land being more marketable or being used as collateral, for instance. Furthermore, titling could mean adding both spouses on the title deed as co-owners. Over half (52%) of the respondents in Bauleni and only 37% in Madido said the love and trust for their spouse had not changed after obtaining title deeds. In both areas very few reported a decrease in their love and trust toward a spouse, that is, <1%. A third of respondents in Bauleni stated that their love and trust for their spouse had increased modestly or greatly while 41% said so in Madido. Overall, the vast majority of respondents in both areas indicated an improvement or no change (Madido 81%; Bauleni 89%) in their trust and love toward the spouse. Interestingly, seventeen respondents in Madido claimed not to know how or whether titling had affected their spousal relationship compared to none being not sure in Bauleni. --- . . Perverse incentives for illegal land allocations There is a risk that legalizing and formalizing land rights to illegally settled land could provide perverse incentives for new land encroachments. In Bauleni, authorities bypassed regulations about plot size, and distance from public infrastructure such as roads and water pipes in numerous cases (Figure 10) during the surveying and subsequent titling process. Furthermore, the legalization of settlement on land that previously belonged to a public college in the case of Madido could motivate future illegal settlements of public land in the expectation of future regularization. Chitonge and Mfune (2015) cited the illegal allocation of idle and vacant public or private land by political party cadres as important in the creation of informal settlements in Lusaka city. --- . . Visibility for residents Landowners are now "visible" to the state, in that they can use their title deeds as proof of residence, a requirement in accessing numerous services provided by both the public and private sector. For example, in order to open a bank account with a formal banking institution, proof of residence is required. Before the acquisition of title deeds, residents had no way of providing this proof. Land rights formalization has spurred increased participation in local development initiatives, such as through ward development committees. This increased participation is positive for local area development as residents are able to articulate issues of interest to them. --- . . Actors and action arenas Local political players were cardinal in the mobilization of residents. In Madido, the clique of ruling party officials that had appropriated land from the college and sold it were engaged to help the technocrats liaise with the community. Due to the illegal way in which the land had been obtained, residents had lived with the threat of eviction and were very apprehensive about any land related discussions. The land sellers were instrumental in providing confirmation of landowners in the numerous cases where proof of sale was missing. They worked hard to assure the community members that the initiative was genuinely meant to provide title deeds to them and was not an eviction exercise. Local political elites have been influential in illegal land allocations in Zambia (Chitonge and Mfune, 2015). During fieldwork, one of them admitted that, "it is not possible for the state to remove people from illegally occupied land, once the land has been allocated by political cadres. That would not auger well for the ruling party. All the state can do is provide public services such as water, schools, clinics and roads". Residents tended to publicly align themselves with party officials of the ruling party or those they knew to be influential in local community development structures as a way to protect their interests. This has engendered patron-client relationships between residents and local political party officials on one hand, and local party officials and higher level politicians and technocrats. Local party officials have been known to usurp the authority of local development officials and technocrats in matters of land administration. This usurpation has been demonstrated in the collection by political cadres of tax that should be collected by local authorities as revenue for service delivery (Beardsworth et al., --- FIGURE Titled houses situated less than a meter from a public drainage channel and road, Bauleni Lusaka. --- 2022 ). There is a risk that the national land titling program may be overtaken by political elements if this clientelism is not addressed. Our research indicates that the issuance of title deeds is faster since Medici Land Governance became involved than was the case with the pilots under the Ministry of Lands and Natural Resources. Interviews with key informants revealed that Medici Land Governance is more efficient because it makes use of geographical information systems and uses block chain technology and is able to get title deeds issued in batches, unlike the traditional Ministry of Lands and Natural Resources system which provides approval per parcel. This is an opportunity for streamlined issuance of title deeds with potential to handle the land volumes expected once the program is fully fledged. --- . Conclusion This study set out to examine how land rights formalization has affected land tenure security, sense of ownership, decision making, land conflicts, love and trust among men and women landowners in two study areas in Lusaka, Zambia. Our research findings show that the ongoing land rights formalization program in Zambia has provided land tenure security for residents of informal settlements that previously lived under constant threat of eviction from their land. Both men and women have similarly benefitted from the formalization initiative through land laws and local norms that allow equitable access to land and land inheritance. Ownership rights and decision making has also been enhanced among both men and women landowners in the two study sites as they can easily alienate their property. Land rights formalization has in some instances curtailed land rights for secondary claimants such as extended family members, in preference for man, spouse and biological children. This is in line with the majority of the respondents in both study areas who were of the view that only the spouse or biological children's names should be on the title deed and have the right to inherit the property. The process of formalizing land rights in informal settlements has entailed putting aside regulations on plot boundary specifications and plot locations; essentially the legalization of illegalities to achieve the states goals of providing land tenure security to poor urbanites who would not otherwise have recourse to legal or regularized land. The study commends the initiative as a propoor initiative that is enabling socially marginalized groups to access legal land documentation and become visible in urban landscapes that have historically not catered for their land and housing needs. As the National Titling Program is expanded to other districts, implementers should develop robust mechanisms for keeping track of the payments made by program beneficiaries through their community municipality offices such as a short messaging system to send alerts whenever payments are made. The messages should include information on the amount paid and balance remaining. Program implementers should also continue to improve on the time between initial payments and issuance of title deeds. Policy makers are cautioned not to incentivize illegal land allocations by not extending the initiative to areas illegally occupied after the start of the program. --- Data availability statement The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation. --- Author contributions Conceptualization, visualization, project administration, funding acquisition, and methodology: BB. Validation: JK, KK, LS, and DM. Formal analysis, investigation, and writing: BB, JK, KK, LS, and DM. Supervision: BB and JK. All authors have read and agreed to the published version of the manuscript. --- Conflict of interest The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. --- Publisher's note All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

fde193e7e70887a55f372fae6a07716c6a44e794

“UHAND”—A National Cancer Institute Funded Partnership to Advance Cancer Health Equity through Scholar Training

Black and Hispanic adults are disproportionately affected by cancer incidence and mortality, and experience disparities in cancer relative to their White counterparts in the US. These groups, including women, are underrepresented among scientists in the fields of cancer, cancer disparities, and cancer care. The "UHAND" Program is a partnership between institutions (

Introduction 1.Importance of Workforce Diversity in Cancer Disparities Research The underrepresentation of women and individuals identifying as members of racial/ethnic minority groups in cancer disparities research and cancer care is well known [1,2], as are the potentially linked racial and ethnic disparities in cancer risk, cancer incidence, and cancer mortality. For example, African American/Black (hereafter, Black) and Hispanic/Latinx (hereafter, Hispanic) men and women bear an unjust burden of incidence and mortality from several cancers (e.g., breast, lung) relative to their non-Hispanic White counterparts [3]. Relatedly, Black and Hispanic adults also experience disparities in cancer risk behaviors, whereby they have greater incidence of physical inactivity, a poorer diet, greater rates of overweight/obesity, and more difficulty quitting tobacco than non-Hispanic White adults [4,5]. Prior studies have found that nearly half of cancer incidence is attributable to environmental and lifestyle factors, with tobacco use, excess body weight, and alcohol intake accounting for 29%, 7%, and 4%, respectively, of approximately 9000 male and 7000 female deaths annually [6][7][8][9]. These are modifiable behaviors/conditions that-if targeted in most at-risk and general populations-may prevent cancer incidences that are not solely hereditary in origin. Moreover, in some cases, women bear more of the burden of cancer risk behaviors relative to men (e.g., higher rates of severe obesity [10], greater smoking relapse rates [11]), making their inclusion in the field critically important to better understanding and addressing these disparities that can ultimately impact cancer incidence and mortality. There are many benefits of training a diverse workforce to address cancer and cancer risk disparities. For example, minority and women researchers may better understand and address the needs of their communities through their unique perspective and awareness of issues that are critical to solving disparities in their communities [12]. This understanding includes how social determinants, or conditions in the places where people live, learn, work, and play [13,14], affect cancer risk and risk behaviors [15][16][17][18]. Additionally, it is important to have researchers and medical professionals from minority populations involved in cancer research to foster population representativeness in clinical trials to better achieve cancer health equity [17,19]. Moreover, research has shown that diverse teams outperform homogenous ones when working together advantageously on incorporating innovation and distinct perspectives [20]. However, further work is needed to address the current research gaps regarding how the social determinants of health disproportionately contribute to cancer health disparities experienced by Black and Hispanic groups [15], as well as how to develop and prepare a diverse workforce to lead this work. Recognizing the importance of training minority and women scientists in order to more ideally address cancer health disparities, the National Cancer Institute (NCI) and other funders have invested heavily in the development of research and training programs [21]. However, more programs focusing on cancer behavioral risk factors such as diet, exercise, and weight management, and those specifically dedicated to developing women and racial minority populations for this work are needed [17,19,22,23]. There is also a need for better knowledge dissemination and translation between researchers and diverse communities [24,25]. Knowledge translation is particularly important in prevention as communities that have greater awareness and understanding of healthy lifestyle behaviors to reduce cancer risk are likely to have improved lifestyle behaviors, treatment options, patient advocacy, and patient compliance. Thus, it is extremely important to address these gaps in training programs to provide a more comprehensive approach in addressing cancer disparities with a more diverse workforce. --- UHAND Partnership Program The "UHAND" Program is a collaboration between the University of Houston (UH) and The University of Texas MD Anderson Cancer Center (MDA), funded by the NCI under a Feasibility Studies to Build Collaborative Partnerships in Cancer Research (P20) initiative (PAR-16-084). The purpose of this collaboration is to bring together a minority-serving institution and a comprehensive cancer center to create a comprehensive research/educational training program that would provide opportunities for underrepresented student "scholars" to develop careers in behavioral cancer prevention and cancer disparities research. Although not a requirement of the funding mechanism, both institutions are located close to one another and in Houston, Texas, the 4th largest metropolitan area in the US [26]. The UH is the second most ethnically diverse major research university in the US and is designated as a Hispanic-Serving Institution and an Asian American and Native American Pacific Islander-Serving Institution by the US Department of Education, Office of Postsecondary Education [27]. MDA has been named as one of the top two US cancer hospitals in the U.S. News & World Report's "Best Hospitals" survey annually since 1990 [28]. The UHAND Program's overarching goal is to ensure that scholars preparing to join the scientific workforce have the necessary skills and capacity to eliminate cancer inequities through the reduction of social and physical risk factors among disproportionately affected groups. The UHAND Program provides support for developing scholars and early-stage investigators (ESIs) to better understand and conduct intra-institutional research projects that address the social determinants of cancer risk behaviors that predispose Black and Hispanic groups to disproportionate cancer risk. The UHAND Program provides integrated education, broad stakeholder engagement, and targeted approaches to involve women, Hispanic, and Black scholarsin cancer research (see Figure 1). cancer hospitals in the U.S. News & World Report's "Best Hospitals" survey annually since 1990 [28]. The UHAND Program's overarching goal is to ensure that scholars preparing to join the scientific workforce have the necessary skills and capacity to eliminate cancer inequities through the reduction of social and physical risk factors among disproportionately affected groups. The UHAND Program provides support for developing scholars and early-stage investigators (ESIs) to better understand and conduct intra-institutional research projects that address the social determinants of cancer risk behaviors that predispose Black and Hispanic groups to disproportionate cancer risk. The UHAND Program provides integrated education, broad stakeholder engagement, and targeted approaches to involve women, Hispanic, and Black scholarsin cancer research (see Figure 1). The UHAND Program incorporates best practices of successful training programs, such as the use of a variety of learning methods [29][30][31] and the continuous evaluation of data on programmatic impact and outcomes [30]; likewise, it features several relatively unique characteristics, such as collaboration between researchers and advocates [24,25], and between institutions [32]. Additionally, the UHAND Program prioritizes diverse minority researchers and women for participation, focuses on behavioral risk factors for cancer, and includes knowledge dissemination and translation between researchers and community through social media and other means. Altogether, these components and the collaborative partnership resulted in the Program's funding by the NCI at first submission. --- UHAND's Major Goals The UHAND Program has four specific goals. The first goal was to develop a research and educational partnership between the UH, MDA, and local community-based organizations to stimulate collaborative cancer disparities research related to tobacco use, poor diet, and physical inactivity among Black and Hispanic individuals. The second goal was to support the development of ESIs through a rigorous Pilot Research Program that facilitates direct-experience proposing, conducting, and leading cancer disparities research, with the support of a larger UHAND Program and its undergraduate, graduate, and postdoctoral scholars. The third goal was to increase the number of underrepresented racial/ethnic minority scholars and faculty engaged in cancer disparities research by providing them with research training, mentorship, and service-learning experiences. Finally, The UHAND Program incorporates best practices of successful training programs, such as the use of a variety of learning methods [29][30][31] and the continuous evaluation of data on programmatic impact and outcomes [30]; likewise, it features several relatively unique characteristics, such as collaboration between researchers and advocates [24,25], and between institutions [32]. Additionally, the UHAND Program prioritizes diverse minority researchers and women for participation, focuses on behavioral risk factors for cancer, and includes knowledge dissemination and translation between researchers and community through social media and other means. Altogether, these components and the collaborative partnership resulted in the Program's funding by the NCI at first submission. --- UHAND's Major Goals The UHAND Program has four specific goals. The first goal was to develop a research and educational partnership between the UH, MDA, and local community-based organizations to stimulate collaborative cancer disparities research related to tobacco use, poor diet, and physical inactivity among Black and Hispanic individuals. The second goal was to support the development of ESIs through a rigorous Pilot Research Program that facilitates direct-experience proposing, conducting, and leading cancer disparities research, with the support of a larger UHAND Program and its undergraduate, graduate, and postdoctoral scholars. The third goal was to increase the number of underrepresented racial/ethnic minority scholars and faculty engaged in cancer disparities research by providing them with research training, mentorship, and service-learning experiences. Finally, the fourth goal was to develop a robust community outreach program focused on engaging community members in cancer disparities education, research, and clinical trials. --- UHAND Program Components There are three main components to the UHAND Program: an Education Program, a Pilot Research Program, and a Community Outreach Program. The Education Program (EP) serves the undergraduate scholars, doctoral scholars (hereafter referred to as graduate scholars), and postdoctoral fellows who represent diverse backgrounds and who were invited to participate in the UHAND Program through a rigorous application and selection process. The EP's goal is to enable scholars to develop the attitudes, knowledge, and skills necessary to conduct research on reducing cancer disparities, with a focus on lifestyle behaviors (e.g., tobacco use, poor diet, physical inactivity) that increase cancer risk for Black and Hispanic adults. This is done by providing the scholars with mentored research projects, seminars in cancer disparities and career development, interactive and community-based service-learning experiences, and summer research experiences, all guided through individual development plans (specifically myIDP [33], one of two IDPs recommended by the NIH) and executed between scholars and their mentors. Scholars also receive at least 8 h of ethics and responsible conduct of research training. All scholars are paired with university research faculty mentors-from either UH or MDA-who have expertise in cancer risk, social determinants of health, clinical and population cancer research in Black and Hispanic populations, and student mentoring. UHAND Program participation was designed to span a 2-year training period. The Pilot Research Program (PRP) is comprised of ESIs who work on pilot projects with senior mentors and an experienced investigative team. The PRP provides support to new investigators in developing innovative and impactful research conducted in community and clinical settings within cancer disparities research, particularly within tobacco-and lifestylerelated disparities research. The UHAND Program grant included funding to support two pilot projects: one on the stress-based biological and behavioral cancer risks among Mexican immigrants, and another on a lifestyle intervention for Black prostate cancer patients on active surveillance and their partners. The PRP was later expanded to include additional projects through Administrative Supplements that extended the scope of the initial two pilot projects. The extended scope incorporated the role of physical activity perceptions and barriers in Mexican immigrant cancer risks, and an evaluation of skeletal muscle strength and function among Black prostate cancer survivors in order to reduce the risk of developing cardiometabolic diseases and ultimately, to improve the quality of life in survivorship. UHAND scholars participated in these projects, assisting with data collection and analyses. The Community Outreach Program (COP) is integrated in the cancer health equity development of scholars and in the execution of pilot research projects to increase the real-world impact of these efforts. The COP comprises UHAND team members with community experience and hosts UHAND Programmatic events, informs community members about the UHAND Program, coordinates opportunities for scholars to attend health fairs and seminars, provides scholars with opportunities to present research to community representatives for feedback, works with scholars in fostering presentation skills to community audiences, and offers scholars unique opportunities to connect with the local community. The COP includes a Community Partners Network of local health-based organizations that provide service-learning opportunities for scholars, and Community Mentors who work with scholars on mentor plans and meetings, provide research feedback from the community perspective, enable access to at-risk populations, and identify local opportunities for sharing research findings. The COP team also works closely with the Community Advisory Board (CAB, elaborated below). The overall aim of the COP is to enable bi-directional communication between the community and the UHAND scholars to enhance the translation and potential impact of UHAND research. --- UHAND Structure and Guiding Boards The UHAND Program was funded through two grant awards (P20CA221696 and P20CA221697): one given to a Principal Investigator (PI) at MDA, and another to a PI at UH. Additionally, the components of the UHAND Program (e.g., EP) each have co-leadership and support staff from both MDA and UH, facilitating a true partnership between institutions. The UHAND Program is guided by a CAB, an Internal Advisory Committee (IAC), and an External Advisory Board (EAB). The CAB comprises prominent community leaders across a range of sectors in the greater Houston area that work collaboratively with the UHAND team in providing training, outreach, and research activity support, in addition to providing guidance for the dissemination of project findings in the community. The IAC comprises institutional leaders and researchers with equal representation from UH and MDA, and assists with scholar selection, institutional support, and program sustainment. The EAB comprises nationally renowned researchers and provides broad scientific direction to and drives innovation in the UHAND Program's research activities, in addition to keeping the UHAND team aware of new and innovative research and educational practices in the cancer disparities field. --- The Current Report The purpose of this report is to present information on the UHAND Program's first cohort of scholars and lessons learned that may inform similar training programs. Our objectives, delineated more fully in the Methods section, were broadly to enhance the scholars' research self-efficacy and academic output through competent mentorship and their sustained participation in the UHAND program, which would ultimately lead to interest in, and be an evidence of, the pursuit of higher education (and/or faculty positions) in the cancer disparities field. Our results are presented in relation to these objectives. This work may provide a comprehensive, evidence-and need-based model for other educational training programs with similar goals for improving cancer health inequities by creating more cancer research career opportunities for women and minorities. --- Materials and Methods --- Participants and Procedures Table 1 describes Note: † Underrepresented racial and ethnic groups in health-related sciences, individuals with physical or mental disabilities, individuals from low-income families, and individuals from inhibiting educational environments [19]; * Scholars who are the first generation from their families to attend college; Postdoc: Postdoctoral Fellow; Grad: Graduate Scholar; UG: Undergraduate Scholar. --- Scholar Eligibility Criteria The eligibility criteria for admission to the UHAND Program were the following: (1) undergraduate or doctoral student enrolled in, or recently accepted into, a full-time degree program at the UH; (2) having at least 2 years remaining in their degree plans prior to graduation at the start point of the UHAND programming; (3) to have backgrounds in, or be interested in, behavioral and social sciences, social work, communications, biomedical sciences and related public health disciplines, or any other disciplines relevant to studying cancer health disparities; and (4) to be a US Citizen or permanent resident (a requirement of the funder). The eligibility criteria for the postdoctoral fellow included the need to have successfully earned a doctoral degree by the start point of the UHAND programming, and interests in cancer health disparities complementary to those of the intended mentor. In the case of the 1st UHAND Program cohort, that was the UH PI. It was not a requirement to be underrepresented in the sciences to be eligible for UHAND Program participation, but demographic data were collected at the point of application and women and/or individuals from racial/ethnic groups underrepresented in the sciences were prioritized for admission. --- Recruitment of Scholars Undergraduate and graduate scholars were recruited through the UHAND website, UHAND social media accounts, free-standing displays and recruitment materials at UH events, presentations in UH classes, word of mouth from UH faculty members to students, and interactive UH events such as UH Honors College summer research recruiting event and UH career fairs where UHAND team members presented the program [34]. The postdoctoral fellow was recruited through a national search through a job ad to facilitate a competitive pool of applicants more quickly than a local recruitment-only approach may have allowed. The job posting was shared with colleagues and on professional listservs, and distributed via targeted emails at the partnering institutions. --- Selection of Scholars Undergraduate and graduate scholars were selected from a variety of UH majors through a 3-level review process. First, the UHAND EP screened application materials and ranked candidates. Next, the UHAND IAC reviewed application materials and ranked applicants. Finally, the UHAND PIs reviewed application materials, received and reviewed rankings, and interviewed candidates. Applications were reviewed for demonstrated academic accomplishments, potential for academic and scholarly success (as indicated from letters of recommendation and transcripts), interest in cancer/health/social disparities, and prior research and/or working experiences. All information was considered by the UHAND PIs in making final admission selections. Out of 5 complete graduate scholar applications and 17 complete undergraduate scholar applications, 3 graduate and 6 undergraduate scholars were invited to join the program. The proportion of undergraduates versus graduate scholars invited to join the first cohort was based on selecting the best candidates of both pools and accounting for the maximum number of scholars we could afford on the budget, balancing that undergraduate inclusion was more affordable than graduate inclusion, based on respective pay rates. As part of their application materials, scholars indicated the top three mentors they would like to work with from a list on UHAND's website. Potential mentors (n = 10 MDA, n = 9 UH) were selected by the UHAND PIs based on their engagement in social/behavioral cancer disparities work and their agreement to participate. Scholars were matched to top-choice mentors, with consideration for ensuring distribution across potential mentors. All approached mentors (4 from UH and 4 from MDA; some mentored >1 scholar) accepted the scholar as a mentee. Postdoctoral applicants applied to the UH and were interviewed by the UH PI, with whom the selected candidate would directly work. In this case, the successful applicant was not previously associated with either of the partnering institutions. Undergraduate and graduate scholars were paid an hourly rate and committed 20 h per week to work with their research mentors and participate in the UHAND Programming (i.e., Cancer Disparities Seminars, Cancer Prevention and Control Grand Rounds, Community Presentations, Writing Sessions, Research Webinars, and other seminars). For undergraduate scholars, UHAND participation also included participation in the UH Summer Undergraduate Research Fellowship (SURF) program, where they learned about various aspects of research-from topics in data science and responsible conduct of research, to learning how to develop effective resumes and poster presentations, applying for awards and graduate school, and managing expectations and challenges in research [35]. They were also given an opportunity to formally present their research project results. The post-doctoral fellow was selected and appointed as a full-time scholar in the UHAND program with a designated faculty mentor. She also participated in all UHAND programming. --- Scholar Outcome Measures 2.2.1. Research Self-Efficacy (Goal 1) Surveys with questions on research self-efficacy were administered at baseline (2018), mid-program (2019), and exit (2020). Postdoctoral fellow and graduate scholar responses were combined to facilitate confidentiality. A modified version of Forester et al.'s research self-efficacy scale was used [36]. The original 33 items were slightly modified and reduced to 14 relevant items regarding successfully accomplishing research related tasks (e.g., writing a research paper, collecting data, formulating hypotheses, etc.), with response options ranging from no confidence (0) to total confidence (9). Two additional investigator-generated items asked about interest and likelihood in pursuing a career in cancer disparities research, with response options ranging from not at all (0) to extremely (4). Our explicit goal was to increase research self-efficacy over time among UHAND scholars from baseline to exit. The research self-efficacy scale demonstrated strong reliabilities (2018: 0.92; 2019: 0.95; 2020: 0.91) in this sample. --- Academic Products (Goal 2) The number and category of academic products were assessed by scholar report throughout the duration of the program. Additionally, an annual survey following program exit captured academic products, noting UHAND support that came to fruition following their enrolled period in the UHAND program. Due to the commonly experienced lag between submission and presentation delivery/publication, our timeframe to assess adherence to our explicit goal was extended to the end of the 2020 calendar year (i.e., 7 months following the end date of Cohort 1 s intended enrollment period). Our explicit goal was to engage UHAND scholars in research, yielding peer-reviewed academic work products such that 2 presentations would be achieved by each undergraduate scholar, 1 presentation and 1 publication would be achieved by each graduate scholar, and 2 presentations and 2 publications would be achieved by the postdoctoral fellow. Goals in excess of this could be pursued by the mentor and mentee as part of the IDP. It is notable that the MDA and the UH PIs were each involved in organizing local conferences to which the scholars could and did submit research for presentation: "Eyes Have Not Seen, Ears Have Not Heard: Breakthroughs in Cancer Research" (Fall 2019), and the "Inaugural HEALTH Research Institute conference" (Winter/Spring 2020). Other presentation opportunities included the annual "Undergraduate Research Day" sponsored by the UH Honors College, and a host of national conferences to which scholars could submit abstracts for presentation. --- Program Retention (Goal 3) Scholar program retention was measured by the comparison of the number of scholars from the time of enrollment to program completion (exit). Our explicit goal was to retain 100% of scholars in the 2-year program by program completion. --- Mentee Evaluation of Mentors (Goal 4) Surveys with questions on scholar evaluations of their mentors were administered at mid-program and at exit. The postdoctoral fellow and graduate scholar responses were combined to facilitate confidentiality. Fleming et al.'s mentor competency assessment was used [37]. This 26-item assessment enables mentees to evaluate 6 mentor competencies in the topic areas of maintaining effective communication, aligning expectations, assessing understanding, fostering independence, addressing diversity, and promoting professional development. Each competency had 2-6 questions asking how skilled the mentee feels the mentor was in the mentioned areas (e.g., active listening, setting research goals, building confidence, etc.) on a scale of not at all (1) to extremely (7). Our explicit goal was to obtain overall scholar ratings of their mentors as at least "moderately" skilled for each mentor competency assessed. The scholar evaluations demonstrated strong reliabilities in all subscales, in both years (2019: 0.91-0.98; 2020: 0.95-1.00). --- UHAND Program Feedback and Strategies Learned (Goals 5 and 6) Exit surveys on program feedback and strategies learned were administered to scholars. The postdoctoral fellow and graduate scholar responses were combined to facilitate confidentiality. Scholars were asked to rate their experiences in the following: 10 categories of UHAND educational seminars and sessions on a 5-point Likert scale, from very poor (0) to excellent (4), with an option to select N/A; UHAND programmatic aspects via 12 items on a 5-point Likert scale from very poor (0) to excellent (4); and general program satisfaction in 5 different programmatic activities on a 5-point Likert scale, from very poor (0) to excellent (4), with an option to select N/A. Face valid, investigator-generated items were used to assess confidence in using strategies learned from UHAND trainings, workshops, and books. These questions asked scholars to rate their confidence in time management, conflict resolution, productivity in writing and completing writing projects, engaging in difficult conversations, career exploration, being resilient in academic rejections, and being resilient in discriminatory/unfair experiences in academia/training on a 5-point Likert scale, from not confident at all (0) to completely confident (4), with an option to select N/A. Our explicit goals were to obtain scholar ratings of the UHAND Program and programming, from "good" to "excellent" (i.e., 3-4), and of confidence in using strategies learned in the UHAND Program, from "fairly confident" to "completely confident" (i.e., 3-4). --- Post-Program Progression (Goal 7) Scholar post-program progression was assessed through surveys that scholars completed monthly during their participation in the program and bi-annually thereafter. Our explicit goal was to have scholars pursue progression in their education and career. Specifically, to have 100% of undergraduate scholars pursue admission to a graduate program (e.g., master's programs, doctoral programs, medical school), 100% of graduate scholars pursue a postdoctoral training or faculty position, and the postdoctoral fellow obtain a tenure-track faculty position following program completion. --- Analyses Descriptive statistics, including means (and standard deviations, SDs) and frequencies (and percentages), were calculated for continuous (i.e., research self-efficacy, mentee evaluation of mentors, and UHAND Program feedback) and binary variables. To account for the small sample size, the Wilcoxon signed-rank test was used to analyze data between matched subjects for differences in distribution and for outcomes of interest over time. Alpha was set at 0.05. All analyses were conducted using SAS 9.4 [38]. --- Results --- Research Self-Efficacy (Goal 1) Table 2 presents the means and standard deviations for each of the 14 research selfefficacy items and for the total research self-efficacy score of all scholars across years and by groups (undergraduates vs. graduates/post doc). The means of total research self-efficacy scores across all scholars were 93.4 (SD = 18.75), 88.9 (SD = 27.8), and 106 (SD = 16.63) for 2018, 2019, and 2020, respectively. The total research self-efficacy score for all scholars significantly increased from 2019 to 2020 (88.9 vs. 106, p = 0.0273) and from 2018 to 2020 (93.4 vs. 106, p = 0.0293), but not from 2018 to 2019 (93.4 vs. 88.9, p = 0.5566). Thus, our explicit goal of increasing the research self-efficacy of scholars from baseline (2018) to exit (2020) was achieved. A closer examination by scholar group indicated that the research self-efficacy of undergraduate scholars increased significantly from 2019 to 2020 (74 vs. 102.83, p = 0.0313), but not from 2018 to 2019 (83.67 vs. 74, p = 0.2188), or from 2018 to 2020 (83.67 vs. 102.83, p = 0.0625). No significant differences were found in graduates/post docs in research self-efficacy scores across years. --- Academic Products (Goal 2) Table 3 displays the academic presentation and publication goals for scholars. Regarding academic presentations, 100% of scholars exceeded presentation goals. Regarding publication goals, the postdoctoral fellow, 1 graduate scholar, and 1 undergraduate scholar met or exceeded goals; however, 2 graduate scholars failed to achieve this goal. Thus, only 60% (3/5) achieved/surpassed publication goals. However, it is important to note that 1 of these graduate scholars achieved multiple publications over this time span, though not with her UHAND mentor (not shown in Table 3), and the other graduate scholar has manuscripts in progress with her UHAND mentor (not shown in Table 3). Overall, we partially achieved academic product goals during the assessed time span. --- Program Retention (Goal 3) Five of six undergraduate scholars completed the 2-year program (83.33%), with 1 scholar completing only 1 year due to an opportunity to graduate early. All 3 graduate scholars completed the 2-year program (100%), and the postdoctoral fellow left after a year to take a tenure-track faculty position (0%). Overall, program retention was 80%. As such, we did not achieve our goal to retain 100% of scholars in the 2-year UHAND Program by program completion. However, none of our scholars dropped out of the program while still enrolled in/employed by UH full time; thus, we retained them in the program as long as they remained eligible for support as UHAND scholars (Table 3). --- Mentee Evaluation of Mentors (Goal 4) Descriptive statistics for different aspects of the mentee evaluation of mentors by scholars in the 2019 and 2020 surveys are presented in Table 4. There was no significant difference between 2019 and 2020 on any aspect of the scholar evaluations of mentors. All mean ratings were above the threshold for at least "moderately skilled" (Table 4), indicating that we had achieved this program goal. Note: Responses for each item ranged from 1 to 7, where 1 = Not at all; 4 = Moderately; and 7 = Extremely. † A total of 11 mentor-mentee dyads were assessed across 10 scholars; 1 undergraduate scholar switched mentors after Year 1 (and thus had 2 mentors). --- UHAND Program Feedback and Strategies Learned (Goals 5 and 6) Table 5 shows scholar feedback on the quality of UHAND educational seminars and sessions, the quality of other UHAND programmatic aspects, general program satisfaction, and confidence in using strategies learned in the UHAND Program. All ratings were above the scale of 3 (i.e., "good" for UHAND Program seminars/sessions, programmatic aspects, and general program satisfaction; and "fairly confident" for confidence in using the strategies learned) except for 2 ratings: community service-learning experience with community partners (Mean = 2.6, SD = 1.07) and community service-learning experience with UHAND staff/health educators (Mean = 2.78, SD = 1.09). Thus, we failed to achieve our goal of obtaining scholar ratings from "good" to "excellent" (i.e., [3][4] for UHAND programming, and ratings from "fairly confident" to "confident" (i.e., 3-4) for using strategies learned in the UHAND Program, particularly in the case of 2 of 34 (5.89%) UHAND Program seminars/sessions, both in the area of community service-learning. 3.80 (0.42) I have increased my ability to be an independent researcher as the result of UHAND. 3.60 (0.52) The UHAND Program was important to my career development. --- Post-Program Career Progression (Goal 7) All 6 undergraduate scholars pursued admission into health science graduate (4 scholars) or medical school (2 scholars) programs (100%), 5 of whom have reported program acceptance to date. It is too early to assess the 3 graduate scholars' program progression, as they are all currently in good standing in graduate school. The postdoctoral fellow secured a tenure-track faculty position. With follow up, we will be able to evaluate the launch of the 3 graduate scholars in their career progression. --- Discussion This report described the implementation of the UHAND Program, a UH and MDA collaboration to create a comprehensive career development training program for scholars underrepresented in the fields of behavioral cancer prevention and cancer disparities research, funded by the NCI's Partnerships to Advance Cancer Health Equity initiative. The UHAND Program incorporated best practices of successful training programs, such as integrated education (diverse professional teams working together, cross-training, exposure to a broad range of disciplines, an integrated curriculum with different subjects, and a variety of learning methods) [29][30][31]; professional development [29]; collaboration between researchers and advocates [24,25]; collaborative partnerships between institutions [32]; broad stakeholder engagement [25,29]; targeted approaches for at-risk groups [25]; training programs at predoctoral, doctoral, and postdoctoral levels [30]; continuous evaluation data on programmatic impact and outcomes [30], while uniquely focusing on research and training in behavioral risk factors for cancer-prioritizing diverse women and minority researchers for training-and facilitating knowledge dissemination and translation between researchers and community. This report presents outcomes relative to the 7 goals of the UHAND Program's work with scholars and information that may be helpful for the design of future training programs that share similar goals. The first goal to increase scholars' research self-efficacy from program baseline to exit was achieved. The UHAND Program provided scholars with research experiences, didactic coursework, career development seminars, and interactive community-basedlearning experiences guided through IDPs with their mentors. Scholars were also involved in presenting research to community representatives and audiences, as well as professional/academic audiences. For our undergraduate scholars, they also participated in the SURF program at the UH, which has several didactic research and ethics lectures, tours of labs on campus, and research-building skills over a 10-week summer term. These types of experiences were designed to help build and develop their research self-efficacy skills through mastery via skill-building (e.g., through hands-on mentored research projects), vicarious learning (e.g., through engagement in research seminars given by established researchers), and support (e.g., through fellowship activities, EP check-ins, PI meetings with mentees and mentors). Overall, research self-efficacy significantly increased over the 2-year program, although this was driven by the undergraduate scholars and followed an overall decrease in self-efficacy from the pre-program to the mid-program assessments. The latter may be explained by the Dunning-Kruger Effect, whereby inexperienced people tend to have high confidence and falsely and unknowingly rate their performance highly [39]. Over time and with gained experience, they realize how much they do not know, and this may cause a sharp decline in self-confidence [39]. One report has shown that less competent junior physicians tended to rate their self-efficacy higher than what it was, while competent junior physicians, especially women, tended to rate their self-efficacy lower than those who were less competent [39]. Suggestions for prospective programs would be for the program directors to be aware of the Dunning-Kruger Effect, and particularly that self-efficacy may not translate directly to performance [39]. Tailoring the assessment to the education level of the scholar would be advisable (e.g., undergraduate vs. graduate scholar) by setting clear expectations, measures, and providing factual feedback on skills for undergraduate scholars [39]. Another suggestion is to have assessments and feedback from multiple sources to accurately capture the scholars' progress in the program [39]. Additionally, identification of research self-efficacy skills that received lower ratings relative to the others could be used to develop programming for future scholars. This may be particularly important for programs that are designed to be less than 2 years in duration, given that there may be a sharp decline in self-efficacy over time that should be monitored and addressed in real-time as the scholars enter the research arena. Moreover, it is also worth noting that the more educated group (graduate scholars and the postdoctoral fellow) did not experience statistically significant increases in self-efficacy over time, in contrast to the undergraduate group. Nevertheless, while self-efficacy ratings were higher among this group of scholars relative to the undergraduates to begin with, ratings generally rose from pre-training to exit (from 108 in 2018 to 110.75 in 2020) and were quite high on average, given that the scale range was from 0 to 126. Their smaller group size and higher starting point relative to the undergraduates may have also affected the inability to achieve statistically significant increases in overall self-efficacy. It is also worthy of note that overall interest in a cancer disparities career declined over time in the program, and the likelihood of pursuing a career in cancer disparities experienced a mid-program dip, similar to scholar self-efficacy. We believe that this pattern may be similarly explained-greater experience with something may reveal nuances and challenges that dissuade further pursuit and alter original intentions based on new information gained through experience. However, it is important to note that these changes were not statistically significant for any group, sample sizes were very small such that a single rater could significantly influence averages, and all average ratings were ≥3.0 in every year and every scholar group, equivalent to "very interested" and "very likely" to pursue a career in health disparities (except for the undergraduates' mid-program dip to 2.83). Nevertheless, we failed to completely advance interest and intention to extreme interest/likelihood over time for our scholars; this suggests more work is needed to better understand scholars' responses and thus develop programming to heighten interest/intention, perhaps by further enhancing self-efficacy, addressing imposter syndrome, and/or focusing on scaffolding approaches that clearly indicate pathways to such careers beyond the training program itself. Qualitative feedback, potentially gathered by a researcher not affiliated with the training program, may be helpful in better understanding these patterns and may be an advisable evaluation method to build into similar programs a priori so that issues can be addressed in real-time, as applicable. The second goal was to achieve peer-reviewed academic work products amongst the undergraduate, graduate, and post-doctoral scholars. While all scholars achieved the minimum number of presentations, just over half of the scholars achieved publication goals with wide variability amongst scholars (e.g., one undergraduate scholar gave 8 presentations and a graduate scholar gave 11 presentations by mid-program; one undergraduate scholar published 2 empirical manuscripts). Variability in achieving publication goals was at least partially attributable to some scholars working on new projects in the design or data collection phase, whereas others worked with existing data that facilitated faster manuscript development. Additionally, the publication of scientific articles often takes time, which may partially explain why some scholars did not achieve the publication goals during the 2-year program. Overall, results inform approaches for program leadership to take when setting expectations with research mentors, who could in turn set specific publication goals with attainable timelines in scholars' IDPs. This may include recommendations that mentors provide scholars with access to datasets for secondary analysis and manuscript development while they are involved with ongoing research data collection. Other similar programs could make specific recommendations for academic work product outcomes or provide access to datasets for scholars with mentors who do not have secondary data to work with. The third goal-attaining complete 2-year program retention-was not achieved, but not for undesirable reasons. Some scholars obtained outstanding career opportunities for which they left the training program early, such as our postdoctoral scholar, who was offered a tenure-track faculty position. In UHAND, applicants to the program were required to have at least two years remaining prior to graduation so that they could participate in the entire 2-year program; however, training programs need to be flexible for changing circumstances or opportunities over time that may affect a scholar's original plan. It is noteworthy that apart from the postdoctoral scholar who left the program early due to a job offer, all other scholars remained in the program until completion or (unanticipated early) graduation; this positive result partly supports the high program satisfaction expressed by participants. However, it is important to note that UHAND graduate scholars reported becoming overburdened by UHAND program requirements in their second fellowship year, as they also began their required practicum clinical work in the community, which required additional time and travel that affected their availability for UHAND seminars and trainings. Additionally, two of the three graduate scholars in the UHAND Program were paired with a mentor other than their counseling psychology doctoral mentor, which may have increased the pressure on these scholars to conduct research with UHAND in addition to that with their doctoral program mentor. Thus, the design and duration of future training programs should take into account how scholars' degree program requirements may vary over time, and how the training program can be adapted in kind to ensure academic success and prevent scholar burn out. Additionally, we recommend that graduate scholars in research training programs similar to UHAND be paired with their doctoral mentors for training program research in order to reduce the burden associated with having multiple research mentors. The fourth goal was to obtain a mentee evaluation of mentors of at least "moderately skilled" in the competencies desired of mentors for the UHAND program, specifically in clear communication, setting expectations, being understanding, fostering independence, respecting diversity, and guiding professional development. We achieved this goal, and thus our program may provide a suitable example for mentor and mentee collaboration. The PIs of the UHAND Program were both department chairs at their respective institutions and had a deep understanding of the faculty across departments doing work in cancer disparities. As the PIs personally knew the mentors and/or supervised them in these roles, they were able to successfully match them with scholars and guide them in this process. Generally, we recommend that other training programs work with individuals who have vast institutional knowledge/experience/connections when selecting mentors for program inclusion. In the absence of such knowledge, or perhaps in any case, programming could also be provided to support and develop the mentors in the execution of their roles. In the UHAND program, we routinely communicated with the mentors about external opportunities (e.g., locally held workshops) to enhance their mentorship skills, but we offered no formal training ourselves nor did we assess or monitor training that they may have received. In retrospect, offering and assessing the results of mentor training may have further enhanced competencies in this area and might be particularly appropriate for enhancing training with women and minority scholars, who may not be of the same sex/ethnicity/race as their mentors. The fifth and sixth goals were to achieve ratings from "good" to "excellent" on UHAND Program Feedback, and ratings from "fairly" to "completely confident" on strategies learned by our scholars. The programming included a range of seminars designed to enhance time management, facilitate competency in academic writing, explore career options in cancer disparities, and develop skills in presenting oneself and one's research in both academic and community settings. "Good" to "excellent" scores were achieved for each program element, with the exception of the two tapping into community servicelearning experiences. Feedback provided by the scholars indicated that they were, at times, assigned tasks at community agencies that were rather mundane (e.g., filing), which contributed to dissatisfaction. Feedback from the community agencies in which scholars were placed indicated that they were used to working with more substantial scholar time commitments than what this portion of the UHAND Program allowed (i.e., about 30 h a semester) and thus struggled with how to involve our scholars in substantive and meaningful work. Hence, training programs with service-learning components should explore methods that would enable more time at community agencies, particularly in ways that do not increase overall programmatic time requirements. To give an example, this might be achieved by assisting scholars to get course credit for work with community agencies (e.g., internship experiences) or degree-required clinical practice hours in these settings. Despite challenges, program satisfaction was high, and scholars indicated they were "fairly" to "completely confident" in using many of the strategies and skills they were taught in practice (e.g., engaging in difficult conversations, being resilient in handling discriminatory or unfair experiences in the academy). The seventh goal was to track post-program progression, with undergraduate scholars pursuing graduate program admissions, graduate scholars pursuing postdoctoral or faculty positions, and the post-doctoral scholar obtaining a tenure-track faculty position. We achieved this goal with the post-doctoral and undergraduate scholars, the latter of whom went to a combination of master's degree, doctoral degree, or medical degree programs. It is too early to assess the 3 graduate scholar's program progressions as they remain in good standing in graduate school. With an ultimate program goal of supporting scholars in pursuit of careers in cancer disparities research, it is important to have programs build processes for continuous monitoring and guidance of scholar achievements that extend beyond graduation and the program funding period. To this end, we will continue to follow our scholars over time to track their academic career achievements and ultimate employment as trained professionals. Mechanisms to bolster continued engagement with scholars over time (e.g., periodic newsletters and mailings, "reunion" dinners or virtual events) will need to be considered. While the UHAND Program achieved many goals, lessons were learned that could enhance similar training programs in the future. Although the UHAND Program represents a model for educational training programs focused on reducing health disparities, particularly those focused on cancer, there are limitations that need to be considered in the evaluation of our goals. These include the fact that lessons may not generalize to other cohorts, institutional collaborations, or mentors. This may especially be the case given the low representation of men (n = 1) in our initial cohort of scholars. Future programs may wish to determine a desired sex distribution a priori and select scholars accordingly, inasmuch as a balance between the sexes is desirable. Additionally, all the graduate scholars were in counseling psychology, which is likely a reflection of the UH PI's affiliation with that program and the program's focus on health-oriented, community-engaged work and social justice, which complements the UHAND mission. However, the UHAND Program serves as a model of a grant-supported training program that spanned three diverse educational levels at a minority serving institution, achieved excellent collaboration with a comprehensive cancer center that gave scholars access to many opportunities unavailable at their home institution, and provided diverse scholar access to the cancer center faculty for research training. --- Conclusions The UHAND Program may inform other educational training programs that aim to reduce inequities in cancer, and in health more broadly, by increasing the number of underrepresented racial/ethnic minority student scholars through the provision of research training, mentorship, and service-learning opportunities. The UHAND Program also provides an example of successful engagement and collaboration between institutions, and with community via community outreach. On the whole, the UHAND Program may provide a comprehensive, evidence, and need-based model for other educational training programs with similar goals. --- Data Availability Statement: The data presented in this study are available on request from the corresponding author. The data are not publicly available due to privacy and confidentiality concerns given the very small group of mentees and mentors and the ability to link the two from the data alone, which could affect dynamics of ongoing mentoring relationships in unknown ways. --- Conflicts of Interest: The authors declare no conflict of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, or in the decision to publish the results.

e03f44be4dd9aae20c3f9b23ffbf0a5654c96ee9

A regression discontinuity analysis of the social distancing recommendations for older adults in Sweden during COVID-19

Background: This article investigates the impact of a non-mandatory and age-specific social distancing recommendation on isolation behaviours and disease outcomes in Sweden during the first wave of the coronavirus disease 2019 (COVID-19) pandemic (March to July 2020). The policy stated that people aged 70 years or older should avoid crowded places and contact with people outside the household. Methods: We used a regression discontinuity design--in combination with self-reported isolation data from COVID Symptom Study Sweden (n ¼ 96 053; age range: 39-79 years) and national register data (age range: 39-100þ years) on severe COVID-19 disease (hospitalization or death, n ¼ 21 804) and confirmed cases (n ¼ 48 984)--to estimate the effects of the policy. Results: Our primary analyses showed a sharp drop in the weekly number of visits to crowded places (À13%) and severe COVID-19 cases (À16%) at the 70-year threshold. These results imply that the age-specific recommendations prevented approximately 1800-2700 severe COVID-19 cases, depending on model specification. Conclusions: It seems that the non-mandatory, age-specific recommendations helped control COVID-19 disease during the first wave of the pandemic in Sweden, as opposed to not implementing a social distancing policy aimed at older adults. Our study provides empirical data on how populations may react to non-mandatory, age-specific social distancing policies in the face of a novel virus.

Introduction --- D uring the first wave of the coronavirus disease 2019 (COVID- 19) pandemic in spring 2020, 19 countries in the EU/EEA and the UK implemented social distancing or 'stay-at-home' recommendations for risk groups or vulnerable populations. 1 One of these countries was Sweden, where the Public Health Agency issued a nonmandatory recommendation for individuals aged 70 or over, i.e. the most vulnerable population group concerning severe COVID-19 disease, to avoid contact with persons outside the household and in crowded places (e.g. stores, public transportation). 2 Systematic reviews of the literature on non-pharmaceutical interventions (NPIs) against COVID-19 suggest that social distancing recommendations and 'stay-at-home' orders were moderately effective at reducing the incidence of COVID-19 disease. 3,4 The tendency to comply with NPIs against COVID-19 seems to increase with age, 5,6 and survey data from Sweden suggest that many followed the age-specific recommendation. 7,8 However, it remains unclear how effective the policy was in preventing COVID-19 disease among older adults in Sweden. In this article, we employ a regression discontinuity design (RDD) 9 to isolate the additional effect of Sweden's age-specific recommendation on social distancing behaviours and disease outcomes during the first wave of the COVID-19 pandemic, beyond the effects of general recommendations that were present at the time. Agency in Sweden issued a specific recommendation that individuals aged 70 years or older should avoid crowded places and contact with people outside the household, 8 which was in effect until October 2020 8 (just prior to the second wave). The same recommendation was given to individuals younger than 70 years if they had at least one of the following risk factors: high blood pressure, heart disease, lung disease, obesity, diabetes or receiving immunosuppressant treatment. --- Social distancing outcome measures We used data from COVID Symptom Study Sweden (CSSS), 10 an app-based study that collects data for epidemiologic surveillance and prediction of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection via daily self-reports of disease symptoms. [11][12][13] On their first use of the app, participants self-reported their year of birth, sex, height, weight and postal code. They also completed a health survey with questions about pre-existing health conditions. Participation was voluntary and anyone aged 18 or above living in Sweden could download the CSS app and participate after providing informed consent. The app received considerable attention in the national and local press in the areas surrounding the two founding universities (Uppsala and Lund). Overall, participants were more healthy, less likely to live in disadvantaged areas and less likely to be smokers than the general population. 10 As the first wave occurred during the spring of 2020, we considered individuals who were 70 years of age at the end of 2019 (i.e. born in 1949) to be exposed to the age-specific social distancing recommendations. From 7 May to 29 September 2020, the app also included a weekly question about the levels of isolation during the last seven days. The respondents were asked: (i) 'In the last week, how many times have you visited somewhere with lots of people (e.g. groceries, public transport, work)?', (ii) 'In the last week, how many times have you been outside, with little interaction with people outside your household (e.g. exercise)?' and (iii) 'In the last week, how many times have you visited a healthcare provider (e.g. hospital, clinic, dentist, pharmacy)?'. As described further below, our analysis focuses on individuals close to the 70-year threshold. However, it requires data from younger and older individuals to model the relationship between these social distancing measures and age. We decided a priori to include period-specific averages of the social distancing measures for individuals born before 1980 (i.e. age 39 at the end of 2019) in the study, and there were too few participants born each year before 1940 (79 years) to be included in the analysis of the social distancing data. Participants also had to have at least one observation of isolation data from the period when the social distancing questions were asked up until the end of the first wave of the pandemic (7 May-31 July 2020) (n ¼ 96 053). We averaged the three social distancing measures for each respondent to form a weekly average during this period. Supplementary table S1 contains an overview of characteristics of the entire sample and for individuals close to the age threshold for the recommendations (65-69 years, 70-74 years). Due to the isolation policy's aim to reduce visits to crowded places, measure (i) was our primary measure of social distancing. Going outdoors with limited physical interaction was fine according to the recommendations. Measure (ii) should therefore not be affected. It was less clear what to expect for measure (iii). It was recommended that a courier (such as a younger relative) collect prescriptions from pharmacies. Measure (iii) did, however, include in-person healthcare visits, for which postponement could be considered an adverse effect. --- Disease outcomes We also investigated population-level effects on severe cases (hospitalizations or deaths attributable to COVID-19). We obtained national data on all individuals born before 1980 and coded a binary indicator for whether they had at least one inpatient COVID-19 disease episode or had died due to COVID-19 disease during the first wave (16 March-31 July 2020; n population ¼ 5 396 837; n severe cases ¼ 21 804). The inpatient data were retrieved from the National Patient Register 14 and mortality data from the Cause of Death Register 15 (see Supplementary material for a detailed description). The retrieved data also contained information on year of birth, home address postal code and sex. As a secondary disease outcome, we used the number of confirmed infections by polymerase chain reaction (PCR) testing obtained from the SmiNet database at the Public Health Agency (n confirmed cases ¼ 48 984). It was mandatory for all clinical laboratories in Sweden to report PCR tests positive for SARS-CoV-2 to SmiNet during the COVID-19 pandemic. 10 Tests were highly selective during the first wave, and positive cases represented mostly people who either needed treatment or were being tested because they worked in the healthcare industry. Thus, absolute effects should be interpreted with caution. Nevertheless, as explained in the following section, our design compares individuals aged just above and below 70 years. Therefore, relative estimates can still be meaningful, assuming that testing probabilities were equal close to this threshold. --- Regression discontinuity analysis We relied on a sharp RDD to estimate the effect of the recommendations on social distancing behaviours and disease outcomes as a discontinuous function of age, in years at the end of 2019, at the 70year threshold. The design has, e.g. been used to estimate the effects of early antiretroviral therapy for HIV patients 16 and other agespecific policies (e.g. minimum drinking age laws and co-payments in healthcare). 17,18 Causal effects can be estimated in observational data without controlling for confounders by exploiting changes induced by arbitrary thresholds, such as an age limit. 16 If no other causes of the outcome changes discontinuously at the policy threshold, the RDD estimates will reflect causal effects at the threshold (i.e. for people who are precisely 70 years of age). 19 We are not aware of any other policies that might have affected social distancing or COVID-19 disease at the 70-year threshold. The ability to isolate may be affected by retirement, but 65 is the most common retirement age in Sweden, and retiring at 70 is rare. 20 Hence, retirement should not bias the results by causing a discontinuity at the 70-year threshold. Our implementation follows the RDD estimation and reporting guidelines outlined by Athey and Imbens, 21 Hilton Boon et al. 9 and Gelman and Imbens. 22 While our primary interest is in individuals just above and below the 70-year threshold, RDD estimation requires fitting models to estimate the relationship between outcome variables and age. This estimation is usually performed within a small age window around the threshold (also known as bandwidth). The outcome-age relationship is not of primary interest but helps capture the effects of confounding variables that develop smoothly with age. However, we have to use appropriate model specification and bandwidth to avoid model misspecification bias. 22 Complex model specifications in RDD analyses are prone to overfitting, and Gelman and Imbens 22 caution against using models with high-order polynomials (greater than linear or quadratic). We therefore used local linear and quadratic regressions to estimate the jump in the outcomes at the threshold. In each analysis, we used a data-driven bandwidth selection method to identify the mean squared error optimal window around the 70-year threshold. 23 The larger the bandwidth (i.e. the age window used in the analysis), the more individuals are included, which increases the precision of the effect estimates. However, the risk of model misspecification bias also increases. The data-driven procedure aims to identify the largest possible window in which the relationship between the outcome and age is approximately linear (or quadratic, depending on the model). The analyses were performed using the rdrobust package (version: winter 2020) for Stata (version 16.1). 24 Further details are provided in the Supplementary material. As the pandemic did not affect all regions equally, we conducted subgroup analyses by geographical area (Stockholm, which was hit particularly hard in the first wave, versus the rest of Sweden). We also stratified results by sex to investigate how the underlying risk affected the effect of the recommendation. In the social distancing data, which contained information on medical risk factors, we also considered two additional subgroups: those without any and those with at least one of the following six risk factors communicated by the Public Health Agency in May 2020: obesity (body mass index ! 30), diabetes, lung disease, cancer, heart disease or on immunosuppressant medication. --- Sensitivity analyses We performed recommended sensitivity, balance and falsification checks to assess the risk of bias. 9 We present these analyses in the Supplementary material. In summary, analyses with alternative bandwidths are similar to the main results. The data also passed standard falsification and balance checks (e.g. no evidence of sorting or discontinuities on covariates). --- Ethics approval The Swedish Ethical Review Authority has approved CSSS and the collection of the register data used in this study (DNR 2020-01803 with addendums 2020-04006, 2020-04145, 2020-04451, 2020-07080 and 2021-02316). --- Results --- Principal findings The study participants went to crowded places 5.4 times a week, outdoors with limited interaction 8.8 times a week, and to healthcare providers 0.5 times a week on average during follow-up (see Supplementary table S1 for details). Figure 1 shows how these behaviours varied by age, alongside the fitted values from local linear (figure 1A) and quadratic (figure 1B) regressions estimated within the optimal windows around the 70-year threshold. The analysis suggests that the policy threshold is associated with a sharp decline in the average number of times older adults visited crowded places (e.g. stores) during the first wave of the pandemic [À0.47 (95% confidence interval, CI: À0.89, À0.05) times less per week in the entire sample, which corresponds to a 13% reduction; table 1; figure 1]. We found no evidence of discontinuities at the 70-year threshold on being outside with little interaction or visits to healthcare providers (table 1; figure 1). Figure 2 shows estimated effects on the incidence of severe COVID-19 disease and all confirmed cases per 1000 population at the national level during the first wave of the pandemic, and table 2 contains the effect estimates expressed as incidence rate differences and rate ratios. Overall, it appears that the recommendations may lead to a reduction in COVID-19 disease at the age threshold compared to a scenario without the age-specific recommendations (table 2; figure 2). The local linear estimates indicate a 16% reduction in both severe COVID-19 cases [incidence rate ratio (IRR) ¼ 0.84 (95% CI: 0.73, 1.00)] and the number of confirmed cases [IRR ¼ 0.84 (95% CI: 0.69, 1.08)] at the 70-year threshold, although the CI for confirmed cases overlaps the null (table 2). For severe cases, the estimate was slightly larger in the quadratic specification [IRR ¼ 0.78 (95% CI: 0.64, 0.99)]. Our calculation in Supplementary Box S1 uses these numbers to estimate the impact of the recommendations, assuming that the relative effect is the same for everyone older than 70 years. The results imply that the policy prevented 1803 (95% CI: --- Subgroup analyses The results from the subgroup analyses are presented in table 1 (social distancing outcomes), table 2 (disease outcomes) and Supplementary figures S1-S5 (RDD plots). These estimates were generally imprecise, and the observed differences between subgroups should therefore be interpreted with due caution. Nonetheless, we found an indication that the effect on visits to crowded places was larger among individuals without risk factors than those with at least one risk factor, larger among men than women and larger in Stockholm County than in the rest of Sweden (table 1; Supplementary figures S1 and S2). Exploring these subgroups further, we found that the effect on visits crowded places appeared to be limited to men (independent of risk group status) and women without other risk factors. We found no indication of an effect among women with other risk factors (Supplementary figure S3), but they also isolated themselves more than the other groups even at younger ages (Supplementary figure S3). For the disease outcomes, stronger absolute effects were suggested among men than among women (table 1; Supplementary figures S4 and S5), which is consistent with the social distancing results. However, no effect on COVID-19 disease was observed for Stockholm County, where results were inconclusive (table 2; Supplementary figures S4 and S5). --- Discussion The results suggest that Swedish 70-year-olds isolated themselves more than those just below 70 years, implying that at least parts of the population adhered to the non-mandatory, age-specific recommendations communicated by the Swedish Public Health Agency. The results were generally in line with expectations. In particular, we found that the effect was limited to visits to crowded places, which is the social distancing outcome we assumed would be affected most by the recommendations. The impact on social distancing also seems to have caused a drop in disease outcomes at the 70-year threshold. We were unable to draw firm conclusions from our subgroup analyses, however. Results were inconsistent and inconclusive for Stockholm County, where the pandemic hit particularly hard during the first wave in Sweden. Statistical uncertainty aside, our data suggest also that men may have experienced larger disease risk reductions from the age-specific recommendation than women, while the impact on behaviours seems to have been roughly equal. It seems reasonable that men would benefit more due to their higher disease risk. However, previous research suggests that women tend to comply with NPIs against COVID-19 to a greater extent than men, 25 which we did not find evidence of for this particular policy. People with other risk factors (especially among women) also appeared to be more willing to self-isolate even at younger ages, which could--at least in part--be a consequence of the recommendations aimed at people with other risk factors. Our study adds to the body of knowledge about the effectiveness of NPIs for the control of novel viruses. Previous evidence regarding the effectiveness of social distancing recommendations and stay-athome orders indicates that they were moderately effective in reducing disease transmission during the COVID-19 pandemic, 3,4,26 which is in line with our results. We are not aware of any other empirical studies evaluating the effects of age-specific restrictions or recommendations. Our study therefore provides new insights into how populations may react to age-specific social distancing policies. The notion of higher risks among older people most likely became widespread among the public early during the pandemic, which probably had a general effect on social behaviour across age groups Social distancing recommendations for older adults in Sweden during COVID-19 801 Figure 1 Regression discontinuity plots for the impact of Sweden's age-specific isolation recommendations on social distancing behaviours at the 70-year threshold with binned means (grey dots) and fitted values (black lines) from local linear (A) and quadratic (B) regressions estimated within mean squared error optimal bandwidths around the threshold, for three social distancing measures: (i) mean weekly visits to crowded places, (ii) mean weekly outdoor episodes with no or limited interaction and (iii) mean weekly visits to healthcare providers Note: Additive estimates reflect bias-corrected effects on the difference scale (where 0 ¼ null effect) estimated within mean squared error optimal bandwidths, with 95% Eicker-Huber-White heteroskedasticity-robust confidence intervals from the rdrobust package for Stata in parentheses. Relative estimates reflect ratios (where 1 ¼ null effect) computed using the additive estimates (see Supplementary material for details). Note: Estimates reflect bias-corrected incidence rate differences per 1000 population (IRD, i.e. absolute effects where 0 ¼ null effect) and incidence rate ratios (IRR) (i.e. relative effects where 1 ¼ null effect) estimated within mean squared error optimal bandwidths, with 95% Eicker-Huber-White heteroskedasticity-robust confidence intervals from the rdrobust package for Stata in parentheses. Social distancing recommendations for older adults in Sweden during COVID-19 803 irrespective of recommendations. This notwithstanding, the discontinuities we observe suggest that the age-specific recommendation had an effect in addition to that general effect on from the pandemic and other policies. A modelling study conducted by the Swedish Public Health Agency estimated that the age-specific recommendation prevented between 2100 and 3600 hospitalizations and 750-1312 deaths during March-September 2020. 8 Their study is based on assumptions about the reduction in the number of contacts. Our study provides direct empirical support that the recommendations helped control the outbreak, with impact estimates that are slightly smaller but close to the simulation study results (Supplementary Box S1). The Swedish response to the COVID-19 pandemic was relatively lenient compared to most countries and mainly included nonmandatory recommendations to the public during the first wave of the pandemic. 27 Part of the strategy was to shield vulnerable population groups while keeping society as open as possible. The agespecific recommendation was an important aspect of this strategy, and it is conceivable that the effects are dependent not only on the acceptance among those targeted but also on which other population-level measures (such as limiting the size of gatherings and restrictions directed towards non-essential businesses) that were implemented during the same period. 26 The Swedish public also has high levels of social trust and trust in its government, 28,29 which may have played a role in the success of the age-specific recommendations. 30 However, data from other countries suggest that individual psychological factors (e.g. beliefs about efficacy of the recommendations) may have a larger effect on compliance with NPIs against COVID-19 than institutional trust. 31 Our results should also be interpreted in the light of concerns about adverse effects on mental health. 7,[32][33][34][35][36] In fact, age-specific recommendations were withdrawn in October 2020 due to these concerns. 8 Investigating potential adverse effects is therefore an important avenue for future research. --- Strengths and limitations Our study relied on an RDD, which allows for causal effect estimation in observational data under relatively weak assumptions. 9 Other policies that use the same threshold may, however, bias the results. 19 Sweden had no other relevant policies using a 70-year threshold during the COVID-19 pandemic. The observed discontinuities were also isolated to the expected outcome variables, suggesting causality. The validity of our estimates also depends on appropriate modelling of the age-outcome relationship. We followed the current best practice recommendations, which is to fit simple models (linear or quadratic) within a data-driven bandwidth (age window) around the threshold. 21,22 A typical concern is that the conclusions may depend heavily on the selected bandwidth, 9 but our results are robust to other reasonable bandwidth choices as shown in the Supplementary material. A limitation is that RDD can only be used to estimate effects for persons who are exactly 70 years old. The estimates may not generalize to older parts of the targeted age group, and the calculations in Supplementary Box S1 should, therefore, be interpreted with caution. In addition, while urging older adults to isolate themselves seems to have been a better alternative than encouraging no one to isolate, our data do not permit us to explore what would have happened if the policy had been aimed at a broader age group. A key strength of our study was the availability of detailed and complete register data for severe COVID-19 disease, which most likely limited the extent of outcome misclassification, together with repeated assessment of social distancing during the study period. However, there are some noteworthy limitations to our social distancing data. First, the social distancing measures were selfreported and could therefore be prone to bias if respondents feel pressured to provide a socially acceptable response. 37,38 While the overall levels of the isolation data may be affected, this would only be a problem for the validity of the effect estimates if persons just above 70 years falsely reported greater levels of isolation as a consequence of the policy. Second, participants in the app study were healthier and less disadvantaged than the general population. 10 Thus, the social distancing effect estimates may not generalize to the Swedish population if socioeconomically advantaged groups comply more with non-mandatory recommendations, as suggested by data from Norway and the USA. 39,40 Reassuringly, none of these problems affect the disease outcome data, and the fact that we find an effect in both datasets suggests that our overall conclusions are valid. Another limitation to our study is that social distancing data was only available after 6 May 2020, and thus presents the latter part of the first pandemic wave. Our study was further limited by the selective PCR testing strategy in Sweden during the spring of 2020, which meant that we could not quantify effects on infection rates in absolute terms. Moreover, since we only had access to data on year of birth and lacked data on cohabitation with persons above 70 years, our estimate may suffer from exposure misclassification bias. In both cases, we believe that the misclassification would lead to an underestimation of the true effect. Another limitation was that we could not stratify effects on disease outcomes by medical risk factors, as such register data were not available for the present study. --- Conclusion The age-specific social distancing recommendations appear to have had an additional impact on disease risks and social distancing behaviours beyond the general recommendations that were present at the time. This suggests that non-mandatory social distancing recommendations targeting risk groups may reduce disease transmission during a pandemic, protect against severe disease and save lives. --- Data availability The data supporting this article constitute sensitive personal information and can only be made available to researchers with an approval from the Swedish Ethical Review Authority. Please contact the corresponding author for further details. The analysis code can be found in the Supplementary appendix. --- Supplementary data

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Homicide, Inequality, and Climate: Untangling the Relationships

Researchers debate the causal connections between homicide, inequality, and temperature. This study examines these relationships globally based on country-level data. A new measure of inequality is introduced that provides a more granular measure of inequality patterns than commonly used metrics. The approach allows estimation of risk sensitive decision-making that helps to explain how class impacts violence under different climate conditions. The results indicate that homicide rates are higher when poorer segments of populations are disproportionately influenced by temperature, middle class segments are influenced by inequality, and the wealthy are influenced by middle and impoverished class dynamics.

INTRODUCTION The positive association between inequality and homicide is well-established (Blau and Blau, 1982;Bailey, 1984;Wilson and Daly, 1997;Daly, 2016) and holds at social scales from communities all the way to countries (Levitt, 1999;Messner et al., 2002;Ouimet, 2012;Rufrancos et al., 2013;Harris and Vermaak, 2015;Daly, 2016;Di Matteo and Petrunia, 2019). As a matter of definitional clarity, we adopt the U.N. definition of homicide as intentional homicide, which is unlawful death purposefully inflicted on a person by another person, excluding unintentional homicides and deaths due to armed conflict (UNODC, 2019). Despite the pervasiveness of the relationship between inequality and homicide, scientific consensus to explain it remains elusive. Kelly (2000) argues that inequality creates stresses and erodes social norms among the poor, making homicide more likely. Using the U.N. Human Development Index (HDI), Ouimet (2012) demonstrates that inequality is associated with homicide in countries with medium to high human development. In impoverished low HDI countries, economic factors such as poverty and inequality interact with high proportion of youth, decreasing the effectiveness of the criminal justice system, which in turn leads to increased homicide. Daly (2016) argues that the concentration of wealth and status among wealthy males causes poorer males to compete more lethally over their dwindling supply of social status. Other researchers have proposed that the association between inequality and homicide is spurious, noting that homicide rates tend to be higher in hotter climates and on hotter days (Cheatwood, 1995;Anderson et al., 1997;Mishra, 2015;Heilmann and Kahn, 2019). As with inequality, there is debate over the causal mechanisms that underly this association (Miles-Novelo and Anderson, 2019). Some researchers argue that it is a function of heat stress, which weakens impulse control (Anderson et al., 1997). For instance, recent research indicates that heat interferes with serotonin reception to reduce inhibition, making homicide more likely (Tiihonen et al., 2017). Alternatively, the routine activity hypothesis proposes that homicide is more common in warm weather simply due to the fact that people intermingle more in warm weather, providing more opportunities for violence, and spend more time outdoors where they are less protected, placing themselves at greater risk (Cheatwood, 1995;Rotton and Cohn, 2003;Miles-Novelo and Anderson, 2019). Coccia (2018) importantly demonstrates that there is a strong correlation between hot climate and inequality that confounds the relationship between homicide, inequality, and temperature. The association between heat and homicide is reinforced at deep historic and prehistoric time scales (Hsiang et al., 2013), and growing climatic warming and associated climate change has created fears that violence will increase (Rotton and Cohn, 2003;Mares and Moffett, 2016;Van Lange et al., 2016;Miles-Novelo and Anderson, 2019). Anderson et al. (1997) pioneering study of the 50 largest U.S. metropolitan areas established a strong positive relationship between temperature and homicide through time. In another early study, Rotton and Cohn (2003) found that temperature was associated with assault, rape, robbery, and burglary through time, but not homicide in a state-level study of the United States, and in a study of U.S. counties, found that temperature had a strong bivariate effect on all major categories of crime. Recent empirical studies have largely corroborated the association of climate change and homicide, but the results are mixed and nuanced. Climate change appears to have an indirect effect on homicide, mediated by other factors. For instance, Barlett et al. (2020) provide a path model based on country-level correlations from 1961 to 2015 that connects global warming to extreme weather events that threaten clean water supplies, which they infer creates resource stresses that motivate homicide. Similarly, Peñaherrera-Aguirre et al. ( 2019) conducted a 25-year moving average study demonstrating that climate change exacerbates resource competition and inequality, which is mediated through proposed evolutionary influences based on latitude, cultural norms, and climate change. Furthermore, some studies find mixed or no association between temperature and homicide. A study of nine U.S. cities from 2007 to 2017 found that the positive association between temperature and homicide held only for Chicago and New York (Xu et al., 2020). Finally, a study of New York and London covering the years 1895-2015 found that including per capita GDP in a statistical model eliminated the temperature effect on homicide, and correcting for serial autocorrelation eliminated all relationships (Lynch et al., 2020). These recent studies indicate that further research is necessary to establish a clear link between climate change, notably global warming, and increased homicide. In this paper, the relationships between homicide, inequality, inequality-driven risk sensitivity, and temperature are explored on a global country-level data set from 1960 to 2019. Inequality is examined with several different metrics. The Gini coefficient measures overall patterns of inequality, the percent population below the poverty line measures the effects of absolute poverty, and a new measure of inequality based on wealth and status distributions provides an examination of these relationships for poor, middle class, and wealthy segments of society. The fundamental finding is that inequality is the prime driver of homicide rather than temperature, although inequality-driven risk sensitivities of poor, middle-class, and wealthy segments of society interact with temperature. These interactions have potential policy implications and deserve further scrutiny. --- INEQUALITY, SOCIAL STATUS, AND RISK SENSITIVITY The association of inequality and homicide suggests further investigation regarding how inequality and class differences are related to lethal violence. Friedman and Savage (1948) suggested that unequal distributions of wealth and social status impact individuals' utility functions (satisfaction derived from status), which in turn influence an individual's willingness to take or avoid risks. Despite their focus on private individual subjective utility functions, their copious footnotes, almost equal to the text of the article, provide data and arguments suggesting that the publicly observable distribution of wealth influences individuals' utility functions and sensitivity to risk. The use of violence, especially among peer-competitors who have the same access to the means of violence, is by definition highly risky behavior and so should be influenced by wealth and status differences (Wilson and Daly, 1997;Kuznar, 2007;Daly, 2016). Inequality is measured many ways including percentage of wealth owned by the top x percent, percent of a population living in poverty, or the commonly used Gini Coefficient, which is the difference between the Lorenz curve, defined by percent wealth of each percentile of a society, and the line of total equality, in which each percentile of society shares equally in society's wealth (see Kovacevic, 2010 for a full explanation). Each of these measures provides insight into how wealth is distributed in a society, but each obscures variation in inequality between classes. An alternative way of describing inequality records the wealth of each percentile of society against the rank of each percentile in wealth, as suggested by Friedman and Savage (1948). This reveals abrupt increases of wealth as one moves from the poorest to the wealthiest ranks in a society; wealth class boundaries are defined by relatively sharp increases in the curve. Figure 1 represents a wealth distribution curve typical of most societies; it has a low tail for the very poor, followed by a sharp increase in wealth that is fairly level and defines a middle class, which is then followed by an extremely sharp increase that continues to the wealthiest individuals in a society. Mathematically, this curve has an initially concave upward section (the poor), followed by a concave downward segment (a middle class), followed by a strongly concave upward section (the wealthy). The curve reflects the fact that wealth is typically concentrated at the top of most societies, and research demonstrates that this pattern is found in societies as varied as small tribes to ancient kingdoms, modern states, and even the entire world economy (Kuznar, 2001(Kuznar, , 2002(Kuznar, , 2007;;Lewis, 2004). The practical utility of wealth is obvious; it can be used to purchase goods and services people need and desire. However, wealth also signals social status. Tokens such as metal or shell armbands in ancient and current tribal societies are classic examples (Mauss, 1967;Malinowski, 1985). Industrial societies are no different. Conspicuous consumption (Veblen, 1994) by the wealthy is abundantly present in modern society; they build elaborate mansions and buy luxury cars whose cost far exceeds what is necessary to satisfy basic needs of shelter and transportation. The wealthy are not the only people interested in tokens of status. A study of social media discussions among the U.S. general public found a positive correlation between inequality and a desire for status goods (Walasek and Brown, 2015). Wealth has much greater significance than purchasing power, it signals one's position in society and consequently one's social worth and status. Wealth has material and social value and therefore one would expect people to compete for it. However, not everyone is equally motivated to compete. People whose utility functions are concave downward are expected to avoid risk and competition because more status can be lost vs. what could be gained; risk aversion is a widespread human tendency (Bernoulli, 1954;Cashdan, 1985). One would expect people to accept risks to achieve status when potential gains can exceed potential losses, represented by the concave upward sections of Figure 1 (Friedman and Savage, 1948;Markowitz, 1952). This pattern of risk-taking behavior has been confirmed across an incredibly wide array of cultures including hunting and gathering bands, tribes, ancient kingdoms and modern states (Pryor, 1976;Kuznar, 2001Kuznar, , 2002)). Risk taking to gain status can take many forms. Legal and socially accepted forms of risk taking include investing in the stock market or starting a legal business. However, people may engage in unsanctioned or illicit forms of risk taking as well. Violently challenging rivals for status is by definition risky. For instance, political science research has identified relative differences in wealth as a core motive for lethal political risk taking, including revolutions (Gurr and Moore, 1997;Besancon, 2005), terrorism (O'Neill, 2000;Kuznar, 2007;Kuznar and Lutz, 2007), and mass protest movements (Midlarsky, 1988). Pratt (1964) provided a measure of risk sensitivity for an individual at different levels of wealth. Subsequent work by Arrow (1974) reinforced his research and it is known as the Arrow-Pratt measure of risk aversion. The measure is calculated as: Equation 1. Arrow-Pratt Measure of Risk Aversion. --- METHODS AND DATA r (x) =- U(x) ′′ U(x) ′ , where U(x) is a utility function that measures satisfaction for differing levels of wealth, x. The measure can range from -∞ to +∞; negative values indicate the degree of risk acceptance and positive values indicate the degree of risk aversion. To the extent that wealth is a measure of social status, the distribution of wealth therefore creates a function for the utility of social status, which was implied in the original proposition for measuring utility by Friedman and Savage (1948). Therefore, by fitting a curve to a wealth distribution, one can measure wealth's utility for conveying social status, and the Arrow-Pratt measure can be applied to determine the risk sensitivity of an individual at any level of wealth. The function fitted to a wealth distribution is called the expo-sigmoid function (Kuznar, 2007) because typical wealth distributions are generally exponential (wealth concentrates at the top), but exhibit sigmoid (S-shaped) oscillations that define wealth classes (Figure 1). The function is: Equation 2. Expo-sigmoid utility function. S rank =e a+b(rank)+csin(rank )+dcos(rank) , where S is the expo-sigmoid fit to the wealth distribution, and rank is the rank from poorest to wealthiest in the society. A full description of the curve fitting method is presented in Kuznar (2007). The World Bank provides publicly available data on homicide, Gini coefficients, percent population below the poverty line (a measure of absolute poverty), and wealth distributions for all countries from 1960 to 2019, enabling measurement of wealth distributions and Arrow-Pratt measures and testing the relationships between all of these variables. These data were used to create wealth distribution curves for the 173 countries with 2019 populations over 300,000, which excludes small tropical Island states who are often outliers in a variety of social measures. Expo-sigmoid curves were fit to their wealth distributions and Arrow-Pratt measures were calculated for each centile. The Arrow-Pratt measure was averaged over these centiles, providing an overall measure of a country's risk sensitivity. Nearly every country exhibited an upward concave poor class, a concave downward middle class, and the wealthy were uniformly strongly concave upward in every case. In order to provide a finergrained analysis of risk sensitivity and homicide in a society, the average Arrow-Pratt measure was calculated for each of these population segments. The World Bank provides homicide rates from the U.N. Office on Drugs and Crime International Statistics, which is recognized as a source of reliable homicide data (Ouimet, 2012). The distribution of the homicide rate by country is heavily skewed toward the lower end, consequently we used its natural log to make it more "normal" and thus more appropriate for parametric statistical analysis. Due to missing data, the sample consisted of 679 country-years. Data imputation methods were employed to fill in missing data, but the resulting analyses provided the same qualitative results as the raw data. Therefore, only the original 679 observations were used in order to remain as true to the original data as possible. Countries have different histories of homicide due to serial autocorrelation (rates in 1 year tend to carry over to the next), and varying levels of social control, policing, and cultural norms surrounding violence. The logged homicide data show breakpoints between low homicide countries (LnHomicide < -0.23, raw homicide rate < 0.8/100,000, number of cases = 124), high homicide countries (LnHomicide > 2.46, raw homicide rate > 11.7/100,000, number of cases = 98), and medium homicide countries in-between (number of cases = 457). These countryspecific effects should be taken into account; panel regression is a common method that takes into account within-group variance on key variables within a linear model (Wooldridge, 2010). Therefore, panel regressions were conducted using panels of low, medium, and high homicide countries. Because the inequality metrics were highly correlated (Table 1), separate models were run for each of the inequality metrics (Gini coefficient, absolute poverty, and the risk sensitivity measures) while controlling for temperature. This allowed each of the inequality metrics to compete statistically with temperature in the association with homicide, avoiding multicollinearity between the inequality metrics and providing insights into (a) the relative importance of inequality and temperature, and (b) varied insights provided by the different inequality measures. --- RESULTS Table 1 presents the raw Pearson correlations between the independent variables based on inequality, poverty, and temperature, and the dependent variable homicide. These data confirm the first order effects of each of the independent variables on homicide. However, the correlations between the independent variables are very high, requiring an account of the relative effects of each independent variable in relation to one another. Ordinary least squares models were employed, using standardized coefficients to examine the statistical significance and relative strengths of the relations between homicide and the inequality, controlling for temperature (Table 2). Separate models were run for each inequality or poverty measure, and always included temperature in order to test for the relative effects of inequality vs. temperature. The Gini and Absolute Poverty models have the highest adjusted R 2 values (0.114, 0.113, respectively), indicating that they perform best. They demonstrate highly statistically significant and substantially higher standardized coefficients for inequality than temperature; absolute poverty has over four times the effect on homicide and the Gini coefficient is 50 times more associated with homicide than temperature. By these measures of inequality, temperature loses its association with homicide world-wide, and inequality appears to be the real driver. Average risk sensitivity is also more associated with homicide than temperature, about twice as much so, but the independent effect of temperature is also statistically significantly related to homicide, although the model explains less than half the variance of the Gini and absolute poverty models. The value of taking a risk sensitivity approach emerges when examining how inequality and temperature operate within classes. The risk sensitivity of the poor is not statistically related to homicide rates, but temperature statistically is and by three times as much as risk sensitivity. The opposite relation holds for the middle class; as they become more risk acceptant homicide rates increase strongly (4.4 times stronger) and temperature is not statistically related. The wealthy present a counter-intuitive result for inequality. As their risk acceptance decreases, homicide rates increase, and the effect of temperature is slightly stronger. --- DISCUSSION Overall, in this study temperature performs poorly when it has to compete with measures of inequality for explaining homicide as previously demonstrated by Coccia (2018). However, the risk sensitivity measure, disaggregated by social class, provides insights into the conditions when temperature may be an important factor. The model based on the risk sensitivity of the poor shows no statistically significant association between homicide and their risk sensitivity, but a strong association with temperature. This indicates that relative poverty may expose people more to the effects of temperature, which can lead to homicidal behavior. For instance, Cheatwood (1995) notes that access to technological means of mitigating heat may lower the likelihood for committing homicide, the very means the poor typically lack. Furthermore, Heilmann and Kahn (2019) argue that extreme heat decreases policing efforts and therefore social control mechanisms in poor neighborhoods, which contributes to higher homicide rates in impoverished areas. Contrasting the results for the poor, homicide rates are strongly influenced by increased risk acceptance among the middle-class but temperature has no discernable effect. This could be due to the fact that middle class people most likely have means with which to mitigate the effects of increased temperature, leaving risk acceptance as the dominant influence on homicide rates. Additionally, a strongly risk averse middle class may lobby for and support more aggressive social control in order to protect themselves and their assets from violence, and as their risk aversion decreases they may be less supportive of these measures, in turn raising homicide rates. The relationships between homicide, inequality, and temperature among the wealthy are more challenging to explain. As the wealthy become more risk averse and as temperature rises, homicide rates increase. This may be a function of the fact that poorer countries tend to be located in hotter regions of the world (Coccia, 2018). It is possible that the poorer a country is, the less wealth differences exist between the wealth, which would decrease their risk acceptance. As demonstrated in the risk acceptant poor model, the poor are particularly susceptible to the effects of heat because of their absolute poverty, raising They argue that exposure to heat stress lowers the economic productivity of the poor whereas the wealthy are able to move to cooler parts of the country, exacerbating wealth differences in developing countries. However, decreased productivity of laborers decreases overall GDP for that country. In all cases, researchers are careful to stress that they can comment only on associations since the specific causal mechanisms are as yet unknown. However, these results reinforce the associations between poverty and homicide in warmer regions of the world, regardless of the risk sensitivity of the wealthy. This research points to several implications for homicide reduction. First, simple equations between homicide and inequality or temperature are not nuanced enough to support effective policy decisions concerning homicide. Inequality is the overarching dominant influencer of homicide, but the impact of temperature appears to be related to class. The data presented in this article indicate that, contrary to Daly (2016), if the poor risk violence to get ahead they will neither gain nor lose much in social status. Therefore, the poor have little rational reason to use violence to get ahead because the cards are stacked against them. Increased temperatures, however, appear to have a disproportional impact on the poor, leading to increased interpersonal homicide. Addressing their basic needs for shelter and relief from heat may a more effective way to decrease homicide rates. The middle class is typically the most peaceful segment of society; they fear loss and so are less likely to take risks and compete, especially in violent ways. However, this study's results indicate that when their status is threatened, that is when their risk aversion decreases, homicide rates can strongly increase. This result invokes loss aversion, in which the fear of loss switches a normally risk averse decision maker to one acceptant of risk taking (Kahneman and Tversky, 2000). Whether this is because they become more violent or because their support for social control decreases with their risk acceptance is unclear and requires further study. Finally, the wealthy present a challenging case. The patterns between wealthy risk sensitivity and homicide appear to represent a complex interaction between their level of risk sensitivity and its impact on middle and lower classes. The results of this study suggest further research. Exactly who kills whom is unclear in available country-level statistics. Data on the class of perpetrators and victims is needed to test the relationships between class, risk sensitivity, and homicide suggested by this analysis. Furthermore, the indirect mechanisms that might link risk sensitivity levels in one class to homicides in another need to be explored. The relationship between elite inequality and homicide also needs to be explored further. People of means not only have alternate and non-violent means of competing, but they also compete in lethal ways that are not classified as interpersonal homicide, as in coups and leading rebellions (Brinton, 1964;Braithwaite et al., 2019), which disproportionately take place in warm weather countries of the developing world. Therefore, research into the linkages between inequality, temperature, and political violence should also be explored. Finally, much work needs to be done to explore other causal factors that operate on the country level. Inequality and temperature are clearly pieces of the puzzle, but not the whole picture. --- DATA AVAILABILITY STATEMENT Publicly available datasets were analyzed in this study. This data can be found at: Harvard Dataverse https://doi.org/10.7910/ DVN/OWYI1B. --- AUTHOR CONTRIBUTIONS LK was the primary author of this article and developed the theory and methodological approach. JD provided technical support for the data analysis. All authors contributed to the article and approved the submitted version. --- Conflict of Interest: Both authors were employed by the company NSI, Inc. The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. Furthermore, the views of the authors do not represent the official views of either Purdue University Fort Wayne or NSI, Inc. Publisher's Note: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

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Genetic and linguistic non-correspondence suggests evidence for collective social climbing in the Kol tribe of South Asia

Both classical and recent genetic studies have unanimously concluded that the genetic landscape of South Asia is unique. At long distances the 'isolation-by-distance' model appears to correspond well with the genetic data, whereas at short distances several other factors, including the caste, have been shown to be strong determinant factors. In addition with these, tribal populations speaking various languages add yet another layer of genetic complexity. The Kol are the third most populous tribal population in India, comprising communities speaking Austroasiatic languages of the Northern Munda branch. Yet, the Kol have not hitherto undergone in-depth genetic analysis. In the present study, we have analysed two Kol groups of central and western India for hundreds thousands of autosomal and several mitochondrial DNA makers to infer their fine genetic structure and affinities to other Eurasian populations. In contrast, with their known linguistic affinity, the Kol share their more recent common ancestry with the Indo-European and Dravidian speaking populations. The geographic-genetic neighbour tests at both the temporal and spatial levels have suggested some degree of excess allele sharing of Kol1 with Kol2, thereby indicating their common stock. Our extensive analysis on the Kol ethnic group shows South Asia to be a living genetics lab, where real-time tests can be performed on existing hypotheses. The Indian subcontinent is renowned for the cultural, linguistic and genetic diversity of its inhabitants 1,2 . This diversity has mainly arisen, in part, through long term human settlement, social customs and genetic drift 3- 5 . Broadly, Indian populations can be categorised as the castes, tribes, linguistic and religious communities. Presently, India counts hundreds of tribal groups, belonging to four major language families; Austroasiatic, Dravidian, Indo-European and Tibeto-Burman 6,7 . Kol is one of them, with their major concentration in Central India (Fig. 1A). Kol is another name for Ho, whose language is a member of the Kherwarian cluster within the Northern Branch of the Munda subgroup of Austroasiatic language family 7-9 . In fact, the language family came to be known as 'Mon-Khmer-Kolarian' when Francis Mason first identified that Kol and the other Munda languages were related to the Mon language of eastern Burma and Thailand in 1854. He suggested that these Munda or 'Kolarian' languages of India and the 'Mon-Annam' languages of Southeast Asia, collectively belonged to one and the same language family 10 . The language family was given its current name ' Austroasiatic' in 1904 by Wilhelm Schmidt 11-15 .

The word Kol is derived from the Mundari word, 'ko' which means 'they and others' 16 . They are mainly concentrated in Central India and regions of Deccan plateau (Fig. 1A). Kols claim themselves to be descendants of epic Ramayana character Savari or Sheori, calling her "Mother of all Kols", and also believe they once inhabited the hills of Rajasthan with another prominent tribe Bhils and helped Rana Pratap, Rajput King of Mewar Rajasthan, in his struggle with the Mughal invaders 17 . The linguistic association of Kol is conflicting 6,11,12,16 , therefore we undertook this study to dissect a fine-grained genetic structure of them. We used large number of autosomal and mitochondrial DNA markers to investigate the incompatible association of Kols as well as their inter and intra population affinities (Supplementary Tables 1 and2). --- Results and Discussion Caste and tribal affinities in South Asia are factors known to have played a vital role in shaping the genetic landscape of the subcontinent 4,18,19 . In our attempt to understand this genetic complexity, we have assessed the ancestry and geneflow pattern of the major tribal populations of South Asia 7,20,21 . In present study we evaluated the genetic affinities of the Kol population, which, as the third largest tribal population of South Asia, comprises ~1.7 million people (Fig. 1A). In conducting our genetic study, we first ascertained the classical ethnographic work, which has suggested Kol as an Austroasiatic (Munda) speaker 17 . As observed previously, the Austroasiatic speakers in India fall out of the South Asian cline due to their Southeast Asian genetic affinity [22][23][24][25] . Therefore, we expected to see their (Kol) clustering with the Munda speakers. However, in the principal component analysis (PCA), both of the studied Kol groups aligned along the South Asian cline with clusters formed by a large number of Indo-European and a few Dravidian speakers (Fig. 1B). Although, the Kols are geographically immediate neighbours of Mundari and Transitional populations, they remarkably exhibit no attraction towards Austroasiatic or Transitional populations (Fig. 1B). At the intra-population level, both of the Kol groups were distinct from each other, suggesting their long-term separation or a possibility of assimilation of different neighbouring tribal groups into a single ethnolinguistic unit called Kol. More specifically, we see three sub-clusters in the vicinity of both of the Kol groups (Fig. 1B). Kol1 and Kol2 fall in the subclusters1 and 2 respectively. Kol1 falls in the subcluster1 with Meghwal, Kurmi, Dharkars, Kanjars (Indian Indo-European), and Lambadi (Dravidian) populations, whilst Kol2 was found to be in-between subclusters 2 and 3 harbouring Dravidian (Sakilli and North Kannadi) and Indo-European (Harijan) populations (Fig. 1B). It is noteworthy, that both of the Kol groups largely share a closer genetic relationship with the majority of the Scheduled caste populations living to their north, speaking Indo-European languages. In order to understand the genetic component sharing of Kol with the other Indian populations, we have plotted various ancestry components inferred from ADMIXTURE analysis (Supplementary Fig. 1). The log-likelihood estimate was in favour of best K value as K = 12 (Supplementary Fig. 2). Apart from two major components prevalent in South Asia, we also see other minor and population-specific ancestry components (Fig. 2). The majority of these minor components were either sporadic or present among some specific language groups 5,8,25 e.g. the Southeast/East Asian components among Mundari and Tibeto-Burman speakers 5,25 . However, we also see a South Indian component which was nearly fixed in Irula and is geographically widespread amongst other South Asian populations with a frequency gradient from east to west or south to north (Fig. 2). Amongst both of the Kol groups, all these three components (two major and one minor) were substantially visible. Except for a single sample, none of the Kol individuals showed any East/Southeast Asian specific component significantly (two tailed p value < 0.001), which is otherwise abundant among their geographic and linguistic neighbours (Transitional and Mundari speaking populations). This finding ruled out their recent common ancestry with the Austroasiatic (Mundari) speakers. Hence, together with the PCA, ADMIXTURE analysis also suggested a non-Austroasiatic connection of these 'Kol' groups. We further investigated one outlier sample of Kol which showed high level of East/Southeast Asian ancestry. In the PC analysis, this Kol individual (Kol outlier) aligned along the Trans-Himalayan cline 5 (Fig. 1B). In terms of population-wise affinity, this individual clustered with the Tharu population of Uttarakhand. In the ADMIXTURE plot (Fig. 2), this individual also showed Tharu like ancestry pattern, confirming the PC analysis result. We retraced our steps from sampling to genotyping of this particular sample, and learnt that the Kol samples were processed in the lab together with the Tharus, and it is likely that one of the 'Tharu' sample was mislabelled as 'Kol' . For further population based analysis (f3 and D statistics) we omitted this sample from the pool. For shared drift analysis of Kol groups, we performed the outgroup f3 test (Supplementary Fig. 3). The result was consistent with the PCA in terms of their closer affinity with extant South Asian populations (Fig. 1B). Both of the Kol groups showed a significant level of allele sharing with other South Asian populations, particularly with Harijans. Populations who were closer to the Kols in the PCA also showed higher shared drift with the Kols. When we compared the alleles shared with East vs. West Eurasian populations, we observed an inverse affinity of Kol1 vs. Kol2 with the East and West Eurasian populations. Kol1 shared more drift with the West Eurasians, whereas Kol2 shared greater drift with the East Eurasians (Supplementary Fig. 3). In the allele frequency based analysis, the Kols exhibited a closer genetic affinity with the Indo-European scheduled castes and tribal populations, rather than with Austroasiatic or Dravidian populations (Figs. 1B and2 and Supplementary Figs. 1 and3). To gain a deeper insight into the extent of genome sharing between the Kols and other South Asian populations, we applied haplotype-based ChromoPainter 26 and fineSTRUCTURE analysis 26 . On the basis of haplotype sharing amongst the studied groups, we compared the mean chunk counts donated by Eurasian populations with Kol groups (Fig. 3). As expected, Kols received majority of the chunks from South Asian populations when compared with other Eurasians. Amongst the South Asians, the Indo-European scheduled caste population Harijan was the major chunk (chunklength as well as chunkcounts) contributor for both of the Kol groups (Fig. 3). The chunk donation of Austroasiatic (Mundari) populations was significantly lower (two tailed p value < 0.0001). The distinct ancestry of one Kol sample can be also seen in this analysis. The Maximum Likelihood (ML) tree obtained from the fineSTRUCTURE analysis placed both of the Kols together with the Indo-European populations (Supplementary Fig. 4). Kol1 and Kol2 fell in to two distinct clusters. Together with other populations, Kol1 is distributed in to two sub-clusters, whereas Kol2 form their five largely own sub-clusters, where one was shared with the Harijans (Supplementary Fig. 4). To see, if the Kol1 and Kol2 belong to same pan-Kol ancestry, we computed D statistics asking if there is any population which share more alleles with either of these (Table 1). When we filtered the top 10 D values for Kol populations, we didn't find any population which shared significantly more alleles than Kol1 shares with Kol2. Thus both of the Kol groups share a more recent common ancestry. To investigate further the inbreeding and relatedness among both the Kol groups, we analysed Runs of Homozygosity (RoH) in the populations [27][28][29] (Supplementary Fig. 5). In an inbred populations RoH tend to be longer and recent in time as recombination doesn't get enough time to break the identical-by-descent segments. Conversely, shorter RoH segments are considered to be older. Both of the Kol groups showed lower RoH segments when compared with the Austroasiatic (Mundari) speaking populations, suggesting their different population history as well as high effective population size (Ne). In order to gain information about their maternal ancestry sharing, we analysed mitochondrial DNA (mtDNA) sequences of the HVS-I (hypervariable segment I) and selected coding regions. Both of the Kol groups shared M2, M3, M18, M30 and R5 haplogroups (Supplementary Fig. 6 and Supplementary Table 2). Our previous study has identified haplogroup R7 as highly frequent haplogroup among North Mundari speakers 30 . However, we didn't find any sample of Kol belonging to haplogroup R7 (Supplementary Table 2). The mtDNA haplogroups of Kols were quite distinct from the general trend of Mundari populations 10,22,30,31 . We utilised haplogroup frequencies to calculate the principal components. We have used geographic labels in one plot and linguistic labels in another plot (Supplementary Fig. 7). In the geographical placement, the pattern followed the isolation-by-distance model. The Uttar Pradesh/Madhya Pradesh Kol (Kol1) clustered with Uttar Pradesh and Madhya Pradesh populations, whereas Maharashtra Kol (Kol2) clustered with the neighbouring Andhra Pradesh populations (Supplementary Fig. 7a). In terms of linguistic affiliation, Kol1 clustered closely with populations speaking Indo-European languages, whereas Kol2 cluster with Andhra Pradesh Dravidian speakers (Supplementary Fig. 7b). Therefore, their maternal ancestry also precludes their Austroasiatic (Munda) affinity. Yet, previous studies have identified the Austroasiatic language communities of South Asia as the result of a gender biased linguistic intrusion, with resulted from the spread of the language by male speakers who introduced the predominant Munda paternal lineage along with a small but recognisable Southeast Asian autosomal component 26 . However, because of the absence of Y chromosomal haplogroup information from the Kol groups, we are unable to test their paternal affiliation. In conclusion, contrary to what is suggested by their name, we found no recent common genetic ancestry of these two Kol groups with the Austroasiatic (Mundari) speakers. The genetic structure of these Kols is more akin to the North Indian Indo-European scheduled caste population known as the Harijan. This finding matches our recent finding that Harijans and Kols shared short IBD (identical by descent) segments with Indian Mundari speakers 25 rejecting any recent geneflow or common ancestry. Our analysis also discards a case of recent language shift, as none of the Kol carried the signal of Southeast Asian ancestry that is present in Austroasiatic (Mundari) populations. Thus, our detailed analysis on one of the major South Asian tribal populations, support a deeply rooted endogamy, which not only exist among caste populations, but also present among tribal populations. Particularly in this case, our sampled Kols lived side-by-side with the Mundari populations. Our finding leaves us with the question as to whether the sampled 'Kol' populations could represent the remnant of ancestral Kol before the ancestors of Munda were linguistically assimilated by incursive Austroasiatic speakers. Since antiquity and even in modern times, in the social climbing process, entire ethnic groups and language communities have been known to pass themselves off as another caste or linguistic group that happens to rank higher in the caste hierarchy 26 . The present study presents what appears to be the first genetic evidence for such a collective ethnolinguistic identity reassignment. --- Materials and Methods To sample Kol population, in the first phase, we surveyed 566 individuals from 12 villages covering three major states of their settlement (Uttar Pradesh, Madhya Pradesh and Maharashtra). It was striking that, in our survey to the sampling regions (Fig. 1A), we did not find a single Kol individual, speaking or having knowledge of Mundari languages. All of the individuals surveyed were fluent in the local Indo-Aryan languages instead, i.e. Bhojpuri-Bagheli in Uttar Pradesh and Madhya Pradesh, Marathi in Maharashtra. Since all early anthropological and linguistic studies on Kols unanimously established their linguistic affinity as speaking Ho or other languages of the Kherwarian cluster within the Northern Branch of the Munda subgroup within Austroasiatic [7][8][9] , in the case of the linguistically assimilated young Kols whom we sampled, we double-checked their ethnolinguistic identity with linguistic expert involved in the study. Since language shift has previously been reported amongst Central Indian tribes 10,32 , we presume that this is also the case with the Kols sampled in the present study. However, we note that a similar model did not appear to apply to the Gond in our previous studies 7,20 . Therefore, in this study we used large number of autosomal and mitochondrial DNA markers to investigate the conflicting association of Kols as well as their inter and intra population affinities (Supplementary Tables 1 and2). We finally collected blood samples of the Kol population from 55 unrelated individuals with informed consent. We avoided people related up to three generations. The first group of Kol (Kol1) was sampled from the geographic borders of Uttar Pradesh and Madhya Pradesh states and second group (Kol2) was collected from Maharashtra state (Fig. 1A). Both of these sampling points were from the places where the Kol are highly concentrated. The DNA was isolated and quantified from standard protocol 33 . We further selected 17 high-quality samples (seven Kol1 and ten Kol2) and generated Illumina 650 K genotype data. This data was released in our earlier publication 23 . All the 55 samples were sequenced for the mtDNA HVS-I region (Supplementary Table 2). We first classified them in their tentative haplogroups, based on the HVS-I mutation and further confirmed these findings by genotyping for coding region mutations (Supplementary Table 2). This study was approved by the ethical committee of the Banaras Hindu University, Varanasi, India. All methods were performed in accordance with the relevant guidelines and regulations. For autosomal data we used PLINK1.9 34 for quality control and data management. We merged the data of the 17 Kol samples with the 1756 samples belonging to 119 world populations (Supplementary Table 1). Similar to our previous studies, SNPs with more than 3% missingness across individuals or with a minor allele frequency less than 10% were removed 23,35 . We have also removed SNPs deviating from Hardy-Weinberg equilibrium 36 . After all quality control measures, we obtained 258311 high quality SNPs, which we used for all our analyses. We classified Indian populations according to their language group. For the populations having conflicted linguistic affiliation, we followed Kumar and Reddy 32 and classified them as 'Transitional' . To remove background linkage disequilibrium (LD) that can affect both principal component analysis (PCA) and ADMIXTURE, we thinned the data set by removing one SNP of any pair in strong LD r2 > 0.4, in a window of 200 SNPs (sliding the window by 25 SNPs at a time). We performed PC analysis using the smartpca programme of the EIGENSOFT package 37 with the default settings to capture genetic variability described by the first ten components. We ran unsupervised ADMIXTURE v1.3 38 with a random seed number generator on the LD-pruned data set 25 times from K = 2 to K = 15. The best supported clustering was shown at K = 12 21,23 . Given the result of the PC and ADMIXTURE analysis, we removed one outlier sample from the Kol2 group for further population-based analysis. The outgroup f3 statistics 39 were calculated as f3 = (Kol1/Kol2, X; Yoruba), where X was any other population and Yoruba served as an outgroup. To investigate the pan-Kol ancestry, we performed D statistics by taking African Yoruba as an outlier D = (Yoruba, Kol1; Kol2, X), whereby X was the other Indian populations. For haplotype-based comparison ChromoPainter v1 26 and fineSTRUCTURE v1 26 were used to perform an MCMC iteration, using 10 M burning runtime and the same MCMC iterations. We first phased our samples with Beagle 3.3.2 40 and modelled haplotype sharing among studied individuals by using ChromoPainter. The ChromoPainter creates a co-ancestry matrix where each and every individual share chunkcounts and chunklength with each other 26 . Thereafter, fin-eSTRCUTURE algorithm cluster them in to subgroups based on the pattern of co-ancestry matrix. The data of fineSTRUCTURE were used to construct the maximum likelihood (ML) tree using MEGA 41 . Runs of homozygosity (RoH) were performed to investigate the inbreeding and ancestral homozygous component sharing. For RoH estimation, we applied window size 1,000 kb, a minimum of 100 SNPs per window allowing one heterozygous and five missing calls per window 27 --- Author contributions --- competing interests The authors declare no competing interests.

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Resisting Via Hybrid Spaces: The Cascade Effect of a Workplace Struggle Against Neoliberal Hegemony

In the summer of 2009, a major media campaign was unleashed in France concerning a series of suicides committed by employees of the main French telecommunications operator. Headlines reported a suicide on 14 July-the 18th since early 2008-which the victim explicitly linked to growing managerial pressures at the company. The case took a broader political dimension when the government intervened in September 2009 to summon the top management of the corporation. Meanwhile, additional employee suicides continued to hit the news. A national debate developed from fall 2009 until spring 2010 on the causes and significance of these suicides, related to changing work conditions, management practices, and broader trends toward privatization and financialization in the national economy. The case stirred the vocal participation of many diverse civil society actors such as professional associations, labor unions, political parties, intellectuals, and religious organizations. This led to the launch of governmental plans, collective framework agreements on stress and violence at work, and a judicial investigation of the legal responsibility of the firm and its top managers. Such widespread media attention, controversies, and regulatory changes did not occur as a spontaneous reaction to the radical actions of individual employees. They resulted rather from the workers' organized resistance, which reached beyond the corporation with the objective of making the issues of work pressures and deteriorating social conditions within the firm visible, recognized, and acted upon at a broader level. In this article, we ask how a workers' resistance movement could gain such a transformative capacity, escalating from the firm into civil society and the State so as to produce long-lasting changes in workplace practices and regulation across the country. We argue that the literature on resistance does not adequately deal with this question as it tends to focus either on the workplace or on civil society as the main locus of the struggle. As a result, it overlooks the processes through which resistance is able to span these different spaces to achieve systemic changes. To capture these understudied processes, we adopt a neo-Gramscian perspective that allows us to think of social transformation as occurring through what Gramsci (1971) sees as the three pillars of a social order or "hegemony," that is, the firm, civil society, and the State (Levy & Egan, 2003). Seen from this angle, hegemony is neither complete nor stable, but rather continuously challenged and transformed via "relations of force" mobilizing discursive, material, and organizational resources that we seek to analyze in our study of the resistance initiative. We show how counter-hegemonic forces emerged and successfully opposed the neoliberal hegemony that materialized in the privatization, financialization, and heavy restructuring 846408J MIXXX10.

of the French telecommunications operator. Our results are presented in the form of a narrative (Ewick & Silbey, 1995, 2003) that renders the polyphonic and dialogic dimensions of the processes under study (Belova, King, & Sliwa, 2008;Humphreys & Brown, 2002). On the basis of in-depth interviews with key actors of the resistance, a wealth of secondary data, and the detailed reconstruction of the chronology of events that unfolded during the crisis, we produce a narrative of hegemonic transformation in three phases: (a) the rise of a new "hegemonic despotism" steering workers' resistance within the firm, (b) the emergence of a counter-hegemony reaching out to the broader civil society, and (c) hegemonic transformation via state intervention. Using this approach, our contribution to the literature is twofold. First, our narrative enriches the literature on resistance by uncovering the "cascade effect" (Levy & Egan, 2003) through which workers' resistance can escalate to reach civil society and the state apparatus and produce hegemonic transformation in the country. Second, we contribute to neo-Gramscian studies on hegemonic transformation by showing the role of a "hybrid space" through which resisters produced this cascade effect. In our neo-Gramscian perspective, a "hybrid space" is formed of micro-and meso-organizational processes that enable resisters to share, develop, and leverage both discursive and material resources across the three main sites of hegemony, that is, the firm, civil society, and the State. Inspired by Moje et al.'s (2004) work in educational studies, this notion serves to capture the cross-institutional dynamics that give resistance the potential to become broadly transformative. The rest of the article is organized as follows. The first section places our work at the intersection of the literature on workplace and civil society struggles and discusses how the concept of hybrid space could bridge these two literatures in a neo-Gramscian perspective. The second section provides an explanation of our methodology. Empirical results unfold as a narrative of hegemonic transformation in the third section, followed by an exploration of the role of the hybrid space of resistance in this cascade effect. We discuss these results by elaborating on the capacity of hybrid spaces of resistance to induce systemic transformations in the contemporary hegemony, before offering a brief conclusion. --- A Neo-Gramscian Reading of Resistance Critical studies of resistance in organizations have emerged from the observation of social struggles at the workplace, most notably in the Marxist tradition of labor process theory. Resistance was understood as an attempt by workers to regain control and autonomy in the production process, against a background of inherent antagonism between labor and capital (Burawoy, 1979;Knights & Willmott, 1990). Various forms of resistance were studied, from collective upsurges and the rise of the labor movement to informal tactics to subvert managerial rules. However, the key tenets of labor process theory were criticized for offering an overdeterministic account of social struggles at the workplace. Some critics argued that the possibilities for workers' emancipation had been excessively downplayed since resistance ultimately sustained capitalist relations of domination, whereas others pointed out that more subjective forms of resistance had not been acknowledged (Courpasson, Dany, & Clegg, 2012;Mumby, 1997). An alternative line of research subsequently drew on the work of Foucault and others to explore the discursive construction of subjectivities at the workplace and the micro-politics through which employees might be able to resist managerially imposed subjectivities, including outright rejection, feigned acceptance, or pragmatic negotiation (Knights & MacCabe, 2000;Thomas & Davies, 2005). The ascendance of such "radical pluralism" was in turn critiqued for celebrating "localized and heterogeneous struggles" (Carrol & Ratner, 1994, p.7), or a form of "anemic" (Mumby, 1997), "decaf" (Contu, 2008) resistance reduced to the "clever tricks of the weak within the order established by the strong" (De Certeau, 1984, p. 40). A number of recent contributions have sought to overcome such limitations by arguing that a combination of practices, both hidden and public, individual and collective, could allow resisters to effectively counteract managerial power, thus enabling "productive" (Courpasson et al., 2012;Courpasson, Dany, & Delbridge, 2017) or "impactful" (Courpasson, 2016) resistance to reverse managerial decisions. However, focusing on the workplace meant that the role of external civil society and state actors, although acknowledged for tilting the balance of power between workers and the firm in empirical accounts of the struggles, was not theorized as a lever of successful resistance. Hence, a broader theoretical perspective is needed to embrace the capacity of workers' resistance to produce outcomes not just within but also beyond the firm, by engaging civil society and the State in a broader process of hegemonic transformation. Several features of a neo-Gramscian perspective suggest that it may be suitable to such an enlarged reading of resistance. First, Gramsci (1971) conceived of a social order or "hegemony" as spanning a "historical bloc" allying "the coercive and bureaucratic authority of the State, dominance in the economic realm, and the consensual legitimacy of civil society" (Levy & Egan, 2003, p. 806). Second, neo-Gramscian hegemony refers to a "process of struggle rather than an existing state of consensual domination" (Mumby, 1997, p. 365), whereby social actors draw on discursive, material, and organizational resources in ways that are constrained but not predetermined by established forms of power, thus opening spaces for contestation and hegemonic transformation under the influence of resisting agents (Levy & Egan, 2003). The concepts of hegemony/counter-hegemony are both "sensitive to the material moment of practice, yet also inclined toward the discursive issues that surround the securing of consent and the advancement of an alternative vision" (Carrol & Ratner, 1994, p. 7). Our choice of a neo-Gramscian approach is thus justified by the possibility it offers of reading power and resistance as dialectical dynamics spanning the firm, the State, and civil society, while also acknowledging the specific historical conditions of the hegemony to be resisted. --- Workplace Struggles Against Neoliberal Hegemony Key tenets of a neo-Gramscian perspective have been mobilized at the macro level to account for the rise of a "global neoliberal hegemony" (Gill, 1997) and the related financialization of Anglo-American and European economies (Bieling, 2013). At the level of the firm, this trend has been traced by following the diffusion of a shareholder value ideology (Ezzamel, Willmott, & Worthington, 2008;Faulconbridge & Muzio, 2009) that entails massive workplace restructuring via cost cutting, downsizing, externalization, and the weakening of collective forms of workers' organization (Cushen, 2013;Forsberg & Stockenstrand, 2014;Hirsch & De Soucey, 2006;Salento, Masino, & Berdicchia, 2013;Saltorato & Benatti, 2017). The shift was significant enough to question whether the new order of domination was still based on hegemonic consent or rather relied on "managerial despotism" (Burawoy, 1985), that is, the arbitrary application of coercion. Gill (1997) suggested that "a less consensual order was emerging, one based increasingly on the politics of supremacy and coercion rather than built from broad-based popular legitimacy" (p. 7). Burawoy (1985) qualified the new regime as "hegemonic despotism" whereby the interests of capital and labor continue to be concretely coordinated, but where labor used to be granted concessions on the basis of the expansion of profits, it now makes concessions on the basis of the relative profitability of one capitalist vis-à-vis another-that is, the opportunity costs of capital. (p. 150) Workers' resistance to neoliberal hegemony has been studied in varied organizational settings such as the airline, engineering, and artistic professions (Cushen, 2013;Forsberg & Stockenstrand, 2014;Fraher & Gabriel, 2016), multinationals' plant shutdowns (Contu, Palpacuer, & Balas, 2013;Erkama & Vaara, 2010;Vidaillet & Gamot, 2015), or the privatization of public services (Spicer & Fleming, 2007). This body of work has departed from neo-Gramscian readings by focusing on the everyday practices of "resisting subjectivities" (Cushen, 2013;Forsberg & Stockenstrand, 2014;Fraher & Gabriel, 2016), the discursive struggles between "competing narratives" whereby workers collectively engage in resisting (Erkama & Vaara, 2010;Spicer & Fleming, 2007), or workers' capacity to "reintroduce a symbolic authority" in a psychoanalytical reading of resistance (Vidaillet & Gamot, 2015, p. 987). These theoretical contributions thus addressed micro-practices of resistance that did not openly challenge or unsettle the dominant order and/or left aside a broader context enabling workers' resistance to become more impactful (Fleming, 2016;Thompson & Harley, 2013). By contrast, a neo-Gramscian perspective would acknowledge the role of an enabling context that took the form of a state-based legal apparatus that workers were able to mobilize in their struggle against neoliberal restructuring at the French factory studied by Vidaillet and Gamot (2015), or the "fundamentally different" funding and governance conditions that allowed professional workers to preserve collective skills and identities in the cases studied by Fraher and Gabriel (2016, p. 171). Hence, workers' capacity to draw on levers and resources located beyond the firm may prove instrumental to challenging neoliberal hegemony, as shown in the neo-Gramscian study of Contu et al. (2013), where the decision to shut down a plant was successfully reversed, thanks to the ideological, organizational, and material support that workers received from the broader civil society and the tribunals where they repeatedly took action. These findings suggest that "productive" resistance might critically depend on understudied processes through which workers can mobilize and develop a variety of tools and resources in and beyond the corporation. Along such lines, Spicer and Böhm (2007) pondered whether "the historically separated realms of workplace politics and civil society have become increasingly blurred" (p. 1683) and envisioned a process of "escalation" whereby workplace movements could "take their struggle into the broader realms of civil society." The authors see escalation as likely to occur when resisters "find few spaces in a workplace to voice their grievances, and issues of the broader legitimacy of management discourses are at stake" (Spicer & Böhm, 2007, p. 1687), a situation that may arise from acute forms of hegemonic despotism. --- Civil Society Movements and Hegemonic Transformation The capacity of resistance to alter contemporary forms of domination has more often been studied outside the workplace. In a neo-Gramscian perspective, broader social movements have been cast as central forces of "counter-hegemony," understood as the "creation of an alternative hegemony on the terrain of civil society" (Pratt, 2004, p. 332), which conveys "an alternative ethical view of society" (Cohn, 2016, p. 113). The most systematic attempts to integrate discursive, material, and organizational dimensions into the study of counter-hegemony have been made by Levy and co-authors in transnational fields where civil society actors pressed multinationals to intervene on social or environmental issues such as climate change (Levy & Egan, 2003), access to AIDS drugs in developing countries (Levy & Scully, 2007), economic inequalities in global production networks (Levy, 2008), or standards for corporate social responsibility (Levy, Brown, & de Jong, 2010) and sustainable coffee (Levy, Reinecke, & Manning, 2016). Yet, counter-hegemonic struggles linking the workplace to civil society have remained understudied, with the significant exception of anti-sweatshop campaigns where activists in Europe and North America have pressured large corporations to support workers' rights at subcontracting factories in the Global South. For Spicer and Böhm (2007), such campaigns epitomize the escalation of workplace struggles that spill over into civil society. However, southern actors-both civil society and workers-have been mainly involved as "secondary subjects" in these transnational campaigns where northern activists tend to play a leading role (Wells, 2009). As a result, we still know little about processes of hegemonic transformation where workers take the lead in driving broader forces of resistance via civil society, or even via the State. The latter has remained largely off the radar of neo-Gramscian organizational studies, which have focused either on the firm or on transnational struggles led by civil society movements. --- Exploring "Hybrid Spaces" of Resistance As previously discussed, the studies of workplace resistance to neoliberal hegemony have mostly focused on micro-practices located within the firm and have thus overlooked the levers and resources that resisters could successfully mobilize in the spheres of the State and civil society. On a broader level, hegemonic transformation has mainly been studied through the prism of movements and struggles among broad groups of players-that is, nongovernmental organizations (NGOs), corporations, governmental institutions-an approach that ignores the more micro processes through which resisters could launch new forms of struggle either within or across such groups. The spillover of workers' resistance into civil society and the State could thus be seen as situated "in between" these two perspectives, in the microand meso-organizational processes whereby resistance could span the three main sites of neoliberal hegemony and induce transformations in these sites. The notion of in-betweenness has attracted interest in the "Third Space" literatures where it serves to define a "hybrid" space created through the encounter of already existing spaces and where new forms of knowledge, discourses, and identities could emerge. These literatures are typically concerned with the processes at play between a predominant "first" space and a "second" less apparent or more marginal space, giving rise to a "third" space. In Soja's (1996) work on political geography, the third space serves to capture the construction of contemporary humans as "intrinsically spatial beings" via the encounter between physical and socialized spaces. From the postcolonial, discursive perspective of Bhabha (1994), the third space symbolizes a place where multiple meanings, appropriations, and translations of the same linguistic signs and cultural symbols may occur, thus challenging the privileged position of the colonizer's ways of knowing. In educational studies, Gutiérrez, Baquedano-Lopez, Alvarez, and Chiu (1999) see the third space as offering access to a multiplicity of meanings and knowledge that students can use as a bridge, or scaffold, between their community's or home-based discourses and school-based discourses, so as to develop stronger understandings of the natural world. It is in the latter field that Moje et al. (2004) set out to integrate these varied contributions by conceptualizing the third space as a "navigational space" in which to gain the skills and expertise to negotiate different discourses and to "cross discursive boundaries"; a space where different knowledge and discourses will "coalesce" to generate new knowledge and "expand the boundaries" of official discourses; and a bridge, or "supportive scaffold," between marginalized and dominant discourses, helping students from disadvantaged backgrounds to develop stronger understandings and strengthen their future social and cognitive development (also see Calabrese-Barton & Tan, 2009). Such perspective may offer some guidance in exploring the spillover of resistance throughout the three spaces of the firm, civil society, and the State, to assess how resisters may develop a hybrid space whereby to "generate," "navigate," and "leverage" not just new knowledge and discourses, as analyzed in Third Space studies, but also material and organizational resources, in line with our neo-Gramscian perspective, to challenge and reshape the dominant hegemony. --- Research Setting and Method The resistance movement at the French Telecom company (hereafter FT) lends itself particularly well to a single case study approach, designed to explore the complex processes through which resistance may spill over from the workplace to civil society and the State. The exceptional reach of resistance further makes this case "unusually revelatory" (Eisenhardt & Graebner, 2007), casting FT as a fairly "unique exemplar" (Gehman et al., 2017) of workplace-led hegemonic transformation. While such features may induce limitations in the replicability of the transformational achievements to be observed, we believe that the theoretical insights derived from this casebased research can be useful to practitioners and scholars of resistance alike, as they offer clues on the question, "What are the activities you actually have to engage in overtime to produce it [transformational resistance]" (Langley, p. 6, in Gehman et al., 2017). We started analyzing the social crisis at FT in December 2009 as it was unfolding in the media. Our initial interest was in identifying the managerial policies that might have contributed to the rise of the employees' ill-being stigmatized by the series of suicides. We observed that FT had undergone the kind of transformation we had studied in other major French multinationals where financialization and a neoliberal regime had deeply unsettled work identities and social relations at the workplace (Palpacuer and Seignour, 2012). FT had experienced a particularly stretching shift in status: From a state administration in the late 1980s, it had become one of the largest publicly traded corporations on the French financial market, with state ownership reduced to 27% at the onset of the crisis in 2008. The corporation had grown abroad while massively restructuring and downsizing in France, cutting more than 60,000 jobs or 40% of the national headcount in a decade (Minella, 2009). FT could thus be seen both as exemplary of the shift toward financialization and managerial coercion occurring in the new hegemonic regime, and as a radical manifestation of this same shift due to the acute form of transformation that the firm had experienced. The media crisis generated an abundant flow of information and discourses in the press and on the Web, and no fewer than seven nonacademic books about the crisis and its premises (Decèze, 2004;Diehl & Doublet, 2010;Du Roy, 2009;Champeaux & Foulon, 2012;Dervin, 2009;Ledun & Font Le Bret, 2010;Talaouit & Nicolas, 2010). We were able use this material to trace the transformation of the firm via financialization, restructuring, and neoliberal rhetoric. During this first phase of research, our attention was drawn to an important source of information on work-related issues within the firm, the Observatory of Stress and Forced Mobility, which some of FT's labor unions had set up as a nonprofit association. Preliminary interviews indicated that the Observatory (referred to as the "Obs" by the resisters) was the organizational arm of an innovative resistance initiative, playing a key role in feeding and steering the national debate. This prompted us to conduct a series of 26 interviews in 2011 and 2012 with 18 actors who had been involved in the resistance and its outcomes (Table 1). These retrospective interviews were conducted at a time close enough to the crisis to allow respondents to produce vivid accounts of factual events, while a postcrisis context made them more inclined to reflect on what had been a rich experience of resistance, but also an intense, politically sensitive, and humanly trying one for most of them. Most interviews lasted from 1 to 3 hr and followed an exploratory, open-ended approach so as to allow interviewees to recall in their own words and perspectives what had happened and how they had been involved in the events under study. Our sample comprised key people involved in launching resistance within FT, spreading the debate in the broader civil society, and acting within the State in response to the media crisis. We identified them either incrementally from the initial interviews or from their visibility in the media. We were also careful to include enough diversity in our sample to allow for contrasted perspectives to be recorded on the initiative under study. For instance, we interviewed labor representatives who had refused to take part in the Observatory, as well as civil society outsiders who were critical toward this initiative. We used additional interview data published in nonacademic sources to complement our primary data and, when relevant, for the purpose of triangulation. We chose to construct our results as a narrative, inspired by scholars who claimed that resistance could be "enabled and collectivized, in part, by (. . .) narrating moments when the taken for granted social structure is exposed and the usual direction of constraints upended, if only for a moment" (Ewick & Silbey, 2003, p. 1329). In this vein, narrative scholarship is seen as "overtly political" in its capacity to "give voice to the subject" (Ewick & Silbey, 1995, p. 199), in this case embodied by the resisters. This choice further allowed us to account for the polyphonic and dialogic dimensions of the resistance initiatives under study (Bakhtin, 1984), which left space for a diversity of voices to be heard in our rendering of the story (Belova et al., 2008;Humphreys & Brown, 2002). Borrowing from Todorov (1968), our story captures the three typical phases of a narrative: out of an initial situation of relative stability, a disruptive event occurs-a tipping point in the history of the firm, here embodied by the restructuring plan NExT (New Experience in Telecommunication); this triggers actions-in the form of workers' resistance, culminating in broad civil society debates; after which calm is restored via a transformation of the initial situation-the CEO is dismissed and regulatory tools are established to detect and prevent psychosocial risks at work in the country. Inspired by a neo-Gramscian perspective, our account highlights relations of force unfolding through the corporation, civil society, and the State, by successively giving prominence to one of these sites and its key players in the sequences of the narrative. The three phases of (a) "hegemonic despotism" within the firm, (b) "counter-hegemonic resistance" in civil society, and (c) "hegemonic transformation" via state actions are closely interwoven, as schematized in Figure 1. These three sequences were further substantiated by systematically coding our interview material so as to characterize the discursive, organizational, and material aspects of the actions and interactions under study in each sequence of the narrative. Drawing on abundant secondary data, including the press releases from the French Press Agency (AFP), we first elaborated a precise chronology of events occurring at or around FT before and during the crisis (Abbott, 2001). This led us to record more than 100 events between the beginning of FT's transformation in 1990 and the postcrisis announcements made by its new CEO in July 2010, 22 of which are shown in Figure 1. The sequential structure of the narrative is particularly well-suited to capture the interplay of agentic forces and broader contextual elements in the processes under study, enabling the examination of "how the actions of one period lead to changes in the context that will affect action in the subsequent period" (Langley, 2009, p. 919). Further iteration among our narrative and the neo-Gramscian literature led us to conceptualize hegemonic transformation as a "cascade effect" of resistance. We then set out to explore in more detail how this cascade effect had been produced by resisters, which led us to mobilize the concept of "hybrid space" to highlight the cross-cutting dynamics of resistance throughout the firm, civil society, and the State. The literature on hybrid space inspired us to locate the source of the cascade effect in resisters' capacity to share, develop, and leverage discursive and material resources across the three spheres of Gramscian hegemony. --- A Three-Stage Process of Hegemonic Transformation The Rise of Hegemonic Despotism Within FT The transformation of FT from a public service into a global corporation was part of a broader shift toward a French form of neoliberal hegemony based on financialization. The French State stimulated the growth of financial markets and encouraged the entry of foreign investors through two waves of reforms in the 1980s and 1990s (Coriat, 2006), whereas the managerial elite endorsed a shareholder value-oriented ideology (Goyer, 2006;Morin, 2000;Schmidt, 2003). Top executives retained significant autonomy vis-à-vis financial markets and continued to collaborate closely with the government elite (Clift, 2004), a pattern that Lubatkin, Lane, Collin, and Very (2005) describe as "centralization based on personal relationships." Three laws were passed between 1990 and 2003 to allow for the progressive privatization of the telecommunications firm (Du Roy, 2009). FT engaged in the kind of international growth that most French multinationals were pursuing at the time, reaching a Number 2 position on the European market. Meanwhile, the firm drastically downsized and reduced the share of employees with public servant status from 90% to 70% of the workforce (Minella, 2009). In this setting, Didier Lombard took over as CEO in 2005 to launch a strong international acquisition policy under the Orange brand and a restructuring plan (NExT) designed to shift FT from its technical focus on being a "network access provider" to the commercial orientation of a "service access provider." On the financial side, Lombard established a low target of €7 billion of annual cash flow in the period 2006 to 2008, of which 40% to 45% would be distributed to shareholders. This material turn in the distribution of wealth was backed by strong adhesion to the ideology of shareholder value and by cultivating close relationships with the financial markets (Chabrak, Craig, & Daidj, 2016). The implementation of NExT was to play a central role in the 2009 crisis. Downsizing objectives were particularly ambitious with a target of 22,000 job cuts over the period 2006 to 2008. This was coupled with a large-scale mobility plan aimed at switching people from technical jobs to commercial jobs in Orange boutiques and call centers. Tight procedures were established and harsh pressure was exercised by intermediate and human resource managers to push people through mobility procedures. These organizational forms of coercion were discursively manifested in the address given by the CEO and HR Director to top executives at a mid-term review of NExT in October 2006, when the program was found to be below targets. Didier Lombard announced that in 2007 he would "implement the departures, one way or another, either through the door or through the window" and that he strongly backed the "crash program" presented by HR Director Olivier Barberot to accelerate mobility via "systematic identification and compulsory registering of people at the development space." Such stringent measures induced widespread bullying of FT workers, causing suicides to proliferate in a context of deep disruption of FT's historical culture and social regulation (Chabrak et al., 2016). NExT was implemented in an unusual context as 70% of FT employees retained their civil servant status, that is, subject to administrative laws that differed significantly from the labor code applied to employees under private contracts. This situation resulted from labor union negotiations to preserve employees' statutory protection when FT was privatized in 1996. This had created a legal vacuum in which the top management could turn a blind eye to legal social constraints and early signs of the social crisis. "They had a feeling of total impunity," recalled a labor inspector (STA2). At a national meeting with occupational physicians in 2008: It was surreal. He [HR Director] comes in, sits down, puts his feet on the table and starts by saying "labor doctors, what's that for?" (. . .) We were in full crisis, it had not yet come out in the media but it was terrible. And (. . .) he didn't care at all. (OC3) Labor unions also played a role in the rise of managerial abuses by failing to act as a counter-power during the restructuring plan. In fact, the unions did not form a unitary front against the "despotic" managerial pressures, as they were undermined by a series of restructuring programs, the decline of the workers' collective identity based on technical skills, and deep internal divisions during the privatization process. The institutions of private labor law, such as Enterprise Committees (ECs), Health and Safety Committees, labor inspections, or even private employment contracts, had only recently been introduced, if at all, within the firm, and the unions lacked the skills and knowledge to operate them. Collectively bargaining over the mass departures under the mobility plan would also have required symbolically acknowledging that the protective civil servant status-for which the FT unions had fought hard over two decades of privatization-had become more of a myth than a reality. Mirroring top managers' denial of the early signals of the crisis, the unions refused to recognize the ideological shift of the corporate elite and its organizational consequences ("We could not imagine that our leaders would start acting like minions of Wall Street," UN-CGC1). --- Emergence of a Counter-Hegemonic Front While NExT unfolded, taking the "drunken boat" (STA1) of FT to "insane" heights (OC4) of managerial violence, a number of resistance initiatives were launched. These were mostly spearheaded by the labor union SUD (Solidaires, Unitaires, Démocratiques) set up at FT in 1989 in opposition to the firm's privatization. As a founding member of the French alter-globalization movement, SUD had been created as a platform of unaffiliated unions in the early 1980s with the aim of renewing the French labor movement. It gained in strength during major strikes and public demonstrations in the 1990s around themes such as the defense of public services, solidarity, democracy, and work enrichment (Biétry, 2007). Concerned about the limits of established forms of union militancy, SUD had initiated critical debates and actions on the question of work organization and suffering at work within the firm in the early 2000s (Decèze, 2004). The union had also started to solicit labor inspectors, who went on to play a key role during the crisis. The most influential resistance initiative at FT would prove to be the Observatory of Stress and Forced Mobility (hereafter the Observatory, or the Obs) established by unionists from SUD and the CGC (Confédération Générale des Cadres), a union that had seen new leaders emerge during FT's start-up acquisitions in the late 1990s (Delmas & Merlin, 2010;Du Roy, 2009). The Obs brought together CGC constituents, mostly managers and engineers under private employment contracts, and SUD members, that is., activist public sector technicians. This rapprochement came about mainly, thanks to an original entente forged by the unions' central delegates-Patrick Ackerman at SUD and Pierre Morville at CGC-who acted as spokespersons for the Observatory. Via the Obs, two labor groups with distinct identities formed a unified front against managerial abuses, financialization, and CEO Didier Lombard, who had come to embody these drifts ("The top management was amazed that we became allies," UN-CGC1). Backed by the relatively abundant material resources of the two unions-a legacy of generous labor union endowment at FT-and a dedicated team of about 20 people, the Obs sought to assess and expose the managerial violence unfolding at FT through systematic analysis and communication. To do so, it drew on the expertise of a scientific committee comprising academics from a variety of disciplines-mainly sociology-to produce a large amount of surveys and research ("We wanted to involve academics in order to legitimize work on which the labor unions were not at ease," UN-CGC2). The diffusion of information was simultaneously geared toward FT employees, labor unionists, and an outside audience that was reached through the Obs' website, conferences, meetings, and sustained interactions with the media. 1 The rise of employee suicides triggered internal debate on whether the phenomena should be addressed by the Observatory, and how. A decision was taken to cast suicides as an extreme manifestation of a broader phenomenon of the employees' ill-being caused by a pathogenic form of management. This framing acknowledged "new forms of suicide that appeared at FT, political suicides . . .. These suicides were signed and put in relation to work" (UN-SUD6). However, not all labor unions supported this surge of resistance. Neither the CFDT (Confédération Française Démocratique du Travail) nor the well-established CGT (Confédération Générale du Travail) joined the initiative. Interunion rivalries played a role in this resistance to resistance, as did tensions between this innovative and the more traditional forms of labor action embedded in FT's historical bloc. Union representatives who opposed the Observatory favored a posture of "negotiation," that is, making specific collective demands to the FT's management, rather than a more radical but open-ended posture of "denunciation" on topics new to labor unions ("We always said that we wanted to open negotiations. The priority was to talk with the firm in order to change things and not just to contest," CGT2). By framing and spreading critical views of managerial practices at the workplace, this resistance paved the way for the major crisis of 2009: The suicide that provoked the shift happened on July 13th in Marseille. It was summer, news was scarce, and the regional TV was covering the event, especially when the guy left a letter that the family insisted on reading aloud at the funerals. (UN-CGC1) The Observatory was suddenly in daily contact with the press, radios, and TV channels, playing a key role in feeding the media with information and analyses. Considered a legitimate source on FT suicides, it regularly confirmed or denied, via its union constituents, the work-related nature of employee suicides that continued to hit the news. Under the impulse of the Obs, the opposition between managerial and resisting actors inside the firm spilled over into the broader civil society through heated debates during the fall of 2009. Neoliberal views that public sector employees were too "fragile" and had been overprotected by the State clashed with denunciations of rising managerial violence at the workplace. Representatives of leftist parties demanded the resignation of the CEO of FT and the opening of a governmental mission on suicides at work, pointing to broader systemic issues of management and restructuring practices in the country. Polemics developed around whether the motives for the suicides could be linked to the company and whether suicides could be considered statistically more significant at FT than in the broader national population. A dense sequence of events followed until the spring of 2010, closely relayed by the media and punctuated with new suicides and suicide attempts in the firm's workforce. --- Hegemonic Transformation Via State Intervention The social agitation triggered several responses from the State. First, strong media coverage prompted the government to intervene to "stop the crisis." Faced with a radically new situation, the Department of Labor was "in panic," "nobody knew what should be done" (STA2). A key player in this situation was Minister of Labor Xavier Darcos, who regularly intervened in the media to push for greater action on the part of FT and other large corporations in the country. Summoned by the government, the CEO announced a number of managerial measures, including the end of forced mobility, which compelled employees to systematically change job every 3 years, and the launch of a vast internal survey on work conditions. Several interim reports were released between December 2009 and March 2010 with large-scale media coverage, revealing that the majority of employees felt under pressure or distressed at work and had experienced deteriorating work conditions in recent years. The survey confirmed the Obs' findings and was instrumental in shifting public opinion in favor of the workers' view that the firm's responsibility was involved in the crisis. Meanwhile, the government pushed for Lombard to resign and flanked him early October 2009 with a spin doctor, Stéphane Richard, a former director of the Private Office of the Minister of the Economy and Finance, who took over as CEO in March 2010. Richard drastically changed the communication style of top management. Several antistress and work management plans were announced in the weeks following his appointment. The shift was acknowledged by resisters: "Richard is not Lombard and his arrival has put an end to the crisis" (UN-SUD2); "his discourse centers on the human side, the public mission, recruitment and the end of massive downsizing plans" (UN-SUD1); "the situation is totally different" (OC3). SUD and CGC came back to the negotiating table, and in the following months Richard successfully concluded collective agreements on stress at work with most FT unions-but not SUD. The consensus was incomplete and, at best, reluctantly embraced. Some protagonists of the historical bloc continued to side with Lombard as a symbol of the technical and engineering tradition of the firm: "I always say: Lombard knows what a phone is, Richard knows what a bank is" (CGT2). The State also took a second line of action. An informal collaboration emerged between labor inspectors covering FT's 450 sites in France and the General Directorate of Labor (DGT) of the French Ministry of Labor. This led to the inspectors agreeing to communicate field information to Hervé Lanouzière, the DGT's technical counselor in charge of work conditions. This pooling of information shed light on critical aspects of FT's human resources management, which Sylvie Catala, the labor inspector in charge of FT headquarters, was able to compile and analyze in a comprehensive report on psychosocial risks at work within the firm. The report qualified the implementation of NExT as pathogenic and documented the link between work conditions and 15 employee suicides. The inspector framed a discourse on psychosocial risks at work by building an analogy with asbestos exposure: Psychosocial risks, it's a bit the same. You take people, you impose restructurings on them, they lose their bearings, they are denigrated . . . and out of ten, one will commit suicide, four will get depressed, and the others will make it through. (STA1) Submitted to the criminal court in February 2010 and widely commented on by the media, the report supported a claim under Art. 40 of the French penal code that FT management was "endangering others by implementing forms of work organization capable of producing severe damage to workers" health. SUD filed a complaint against FT and the three senior officers-the CEO, HR Director, and COO-who had been in charge of the NExT plan, prompting the launch of a judicial proceeding by the tribunal of Paris in April 2010. Over the course of the following months, other FT unions joined SUD in the legal battle. This type of judicial inquiry was a first in France, where the responsibility of a firm, let alone its top managers, had never before been under legal scrutiny for pathogenic management. A third line of government action addressed the crisis at a broader level. In October 2009, Darcos launched an emergency plan to push forward the national collective agreement on stress at work that major employers and labor organizations had signed in 2008, as late adopters of the 2004 European framework agreement on work-related stress. Darcos aimed to have the 1,500 largest corporate employers in France engaged in its implementation by February 2010. At the suggestion of Lanouzière, he adopted a "name and shame" tactic and published a list of companies on the government's website under green, orange, and red tags depending on the progress made in launching an internal plan. The "black list" caused strong reactions in corporate circles and was withdrawn within 24 hr, and Darcos resigned a month later. His push to strengthen the regulation of work conditions in the country nevertheless led to the signature of a national agreement on harassment and violence at work in March 2010, as a transposition of the European framework agreement of 2007. It resulted in a societal and legal recognition of employees' exposure to psychosocial risks and sent a signal to the managerial elite that they should "add a supervisory system in their cockpit" (EXP2) to detect and prevent these risks, a move made by most large corporations in the aftermath of the crisis. The crisis symbolically ended in March 2010 with the arrival of Richard at the head of FT and the signature of firmlevel and country-level collective agreements. Although cases of employee suicides continued to hit the news, their frequency greatly diminished. The media coverage of FT declined and the Observatory slowed down its activities. Table 2 sums up the overall process of hegemonic transformation by highlighting key events, major sites, lead actors, and the main ideological, material, and organizational dimensions of these three sequences. --- Explaining the Cascade Effect of Resistance To explain how workers were able to trigger changes in work practices and regulation both within and beyond the firm, we need to further characterize what can be seen as a "cascade effect" of resistance. The image is borrowed from Levy and Egan (2003) who reflected on hegemonic change: "small perturbations can often be absorbed and accommodated with little impact on the overall structure. Periods of relative stability, however, are punctuated by discontinuity and change, as fissures split open and cascading reactions lead to major system-wide reconfiguration" (p. 811). In our case, the "fissure" opened when FT was privatized while employees retained the status of civil servants. This created an "outlaw zone" between public and private labor regimes, that is, a space where arbitrary managerial coercion could unfold without meeting collectively defined limits. Cascading reactions occurred when actors outside the dominant alliance, that is, newly formed or recently transformed labor unions, organized a counter-hegemonic front that extended beyond the firm via the Obs and the media into the broader civil society, where heated debates on work conditions and employee suicides destabilized the established consent structures in society. A systemic change was achieved when the State reentered the loop to reestablish hegemonic consensus by setting limits on managerial abuses and by restoring workers' rights via collective agreements, the dismissal of FT's CEO, and a legal inquiry into managerial responsibility in the FT crises. However, this cascade effect was in no way mechanistic or structurally predetermined. Rather, our narrative highlights the key role of resisting agents in launching innovative forms of resistance across the firm, civil society, and the State. The threads of this cascade effect can be pulled together by thinking of the Observatory as a "hybrid space" through which workplace resisters could escalate their struggle into civil society and the state apparatus. We elaborate on this perspective to suggest that the Obs developed three dynamics of resistance enabling workers to combine, develop, and leverage not just discursive, but also material and organizational resources, to escalate their struggle into civil society and the state apparatus. --- Escalation Into Civil Society First, the Obs offered a space to navigate through the knowledge and discourses produced by distinct social groups located inside the firm-SUD and CGC-and in the broader civil society-for the most part, social scientists. As the Obs was set up on the terrain of civil society, outside the direct control of dominant groups and under the legal status of association, it was able to reduce the barriers between the workplace and other spheres. As such, the hybrid space was constitutive of a capacity for resistance, allowing the resisters to mobilize a broader spectrum of resources-the scientific expertise of academics, contacts with journalists, labor inspectors, and union members, and funding provided by SUD and CGC. Importantly, it also enabled them to develop navigational skills across discursive boundaries. This was notably the case in the discussions about workers' suicides, when the boundaries between private and public spheres were revisited in view of political action. The hybrid space was itself an outcome of the navigational skills that it came to support collectively, as observed in the union leaders' capacity to launch and sustain the Obs over several years. Pierre Morville, an atypically left-wing unionist at CGC, and Patrick Ackerman, a SUD activist who considered allying with a managerial union, were both aware of the relevance of academic knowledge to the workers' struggles. Second, the hybrid space generated new knowledge, discourses, tools, and acts of resistance. Research participants recall witnessing "the collective elaboration of a grammar and a discourse adapted to the situations experienced at FT" during the Obs' national meetings, thus redefining the "borders between what can and cannot be morally and tactically said on sensitive issues" (Delmas & Merlin, 2010, p. 40). The scientific capacity to "observe" was mobilized not simply to develop a new understanding of the situation experienced by workers but also to act upon it, as expressed in the slogan Observer, Comprendre, Agir (Observe, Understand, Act), devised in response to criticisms by hostile unions that the Obs lacked the capacity to engage with management. Hence, the Obs produced surveys, reports, meetings, as well as training sessions for labor unionists. Third, the hybrid space was subversive. Academic activists depicted a Foucauldian struggle on the battle field of power-knowledge. On one side, the camp of law, order, and truth, with all its privileges, its technologies, its global discourses and their power effect. On the other, the camp of small, dispersed, confiscated, silenced knowledge. The position asserted by the Obs was to detect, decipher, buried knowledge in order to put them in insurrection against the despotism of managerial knowledge. (Burgi & Gojat, 2009, p. 2) The Obs was thus to "serve as a tool for labor unions and enable workers to reclaim the overall project of a true work collective, enable them also to rebuild self-esteem and give meaning to their harrowing experiences" (Burgi & Gojat, 2009, p. 6). Having common counter-hegemonic purpose did not mean that the hybrid space was devoid of internal tensions, as observed, for instance, between the pragmatic expectations voiced by labor unionists and the analytical orientations inherent to academics' contributions (Delmas & Merlin, 2010). --- Escalation Into the State The hybrid space extended into the state apparatus, primarily via the labor inspectorate where connections were forged with key players such as Sylvie Catala, who received early evidence of the situation at FT and also mobilized her expertise for the Obs' educational activities. The navigational space trickled up the State's hierarchical lines, notably via two former labor inspectors-including Lanouzière-who acted as technical counselors of the DGT Jean-Denis Combrexelle and Minister of Labor Xavier Darcos. Neither of these high-ranking officials had the same social and educational background as the French elite and both were deeply concerned by the series of suicides ("Darcos was an important figure and a strong support," UN-CGC3). The pooling and integration of knowledge across government, civil society, and corporate borders also fueled an intense productive activity in the hybrid space in the form of a decisive labor inspection report, the ensuing court case, and the "name and shame" initiative inspired by Anglo-Saxon tactics. For the state resisters, reestablishing employee protection against arbitrary managerial pressures meant opposing the neoliberal logic promoted by the Ministry of the Economy and Finance, representing the State in its shareholder role. Hence, the hegemonic struggle redeployed itself within the state apparatus through the formation of a "diarchy" (CGC1) between the Ministry of Labor and the Ministry of the Economy and Finance. This formation was not monolithic, but rather infused with continuous movement and political maneuvering as, for instance, when Hervé Lanouzière built a "cordon fence" around Sylvie Catala, which allowed her to move forward with her report under Art. 40 of the French Penal Code. Social gains were obtained by the Labor arm of the diarchy in a context of continuing influence of the shareholder State and aligned interests in corporate and civil society circles, as illustrated by Richard's choice to replace Lombard, the quick halt of the name and shame tactic, and the slow progress of the legal procedure launched against FT and its top managers. --- Hybrid Spaces of Resistance as Levers for Systemic Change "There is nothing inherent in a social situation that will automatically prompt resistance" (Fleming, 2016, p. 107). Even though management practices were acknowledged to be particularly destructive in the case under study (Chabrak et al., 2016), workplace bullying has become pervasive and work-related suicides are estimated to be on the rise in major industrial economies (Waters, 2017), underscoring the brutal "logics of expulsion"-from jobs, houses, land, and in our case, life itself-which Sassen (2014) sees as a defining feature of our times. It is rather due to the characteristics of the resistance per se that this case could stand out as exemplary. What is remarkable is the way in which the workplace struggle escalated beyond the firm and gained leverage in civil society and the state apparatus, bringing about hegemonic transformation in the form of collective agreements on stress and violence at work, the launch of new corporate procedures on psychosocial risks, and a pending court case engaging the penal responsibility of the firm's management for harassing workers. A neo-Gramscian perspective allowed us to account for the "cascade effect" of this resistance, which we further explained by highlighting the multifaceted role of a hybrid space, situated at a meso-level between individuals and dominant institutions, and spanning the three sites of hegemony/ counter-hegemony. We highlight three processes of "sharing," "generating," and "leveraging" not only discursive but also material resources, which occurred in what we see as a hybrid space of resistance. To do so, we drew inspiration from the notion of hybridity offered by Moje et al. (2004). We recast this notion and extended it to a neo-Gramscian perspective where it serves to highlight the cross-institutional nature of the resistance across the firm, civil society, and the State. As a result, our perspective on hybridity could account for a "fourth" rather than a "third" space, as it has the capacity to integrate actors and resources across the three main sites of hegemony/counter-hegemony. Such features distinguish our neo-Gramscian perspective on hybrid spaces from the related notion of "free space" (Evans & Boyte, 1986), which has been mobilized in studies on workplace and civil society resistance (Courpasson et al., 2017;Polletta, 1999). Free spaces are seen as small-scale settings located outside the control of dominant groups, which are "voluntarily participated in, and generate the cultural challenge that precedes or accompanies political mobilization" (Polletta, 1999, p. 1). The fact of being located outside the firm's managerial control, in the realm of civil society, was certainly important to the Obs' capacity to launch and sustain a counter-hegemonic movement. Nevertheless, our neo-Gramscian take on hybrid space does not presuppose the informality and marginality of a free space vis-à-vis hegemonic institutions. It rather signals the capacity to mobilize resources and launch actions across the core institutions constituting the hegemony. By doing so, it provides for two broad types of contribution to the literature. First, in Gramscian terms, civil society is seen as the main field of "interest articulation and social struggle," where the alignment of hegemonic forces can be destabilized through political contestation (Carroll & Ratner, 1994, p. 6). From the perspective of neo-Gramscian studies, a core contribution of our research is thus to show that political contestation may lead to systemic change when-and if-it is prompted from within a hybrid space that interconnects resisters not only within civil society, but also in the spheres of the State and the corporation. Our account of the resistance at France Telecom underscores the alliances that resisters had to build across the main sites of neoliberal hegemony, as well as the tensions they faced within each of these three spheres, particularly-but not exclusively 2 -in the firm and the State, so as to achieve hegemonic transformation. Our findings support the assumption that "counter-hegemony has to start from that which exists, which involves starting from 'where people are at' . . . [and] involves the 'reworking' or 'refashioning' of the elements which are constitutive of the hegemony" (Hunt, 1990, p. 136, in Ewick & Silbey, 2003, p. 1335). We emphasize the cross-institutional hybridity of the micro processes that enabled such counter-hegemony to become broadly transformative. Second, by offering a narrative of the hegemonic transformation that people were able to induce through a hybrid space of resistance, we help to bridge the gap between workplace and civil society resistance studies. Our rendering of the hybrid space acknowledges features that have been observed in both sites insofar as the "meaning" it served to elaborate was not "innate and predetermined" but remained "fluid and multivalent" over the course of the struggle, which itself took multiple forms: "a struggle to form, a struggle against power, a struggle that involved power, and an internal struggle" (Hardy, 2016, pp. 103-104). Our contribution adds to these perspectives by offering a practical theory of resistance based on the three core processes of "sharing," "generating," and "leveraging" discursive and material resources across the three sites of hegemony/counter-hegemony: (a) "sharing" or "navigating through" diverse cultural, procedural and discursive resources, in our case among labor unionists, civil servants, academics, journalists and other resisters; (b) "generating" new resources, that is, new political views on suicides and psychosocial risks at work, new legal and managerial procedures at the workplace; and (c) "leveraging" these resources to transform dominant discourses and practices as conveyed, in our study, by the Ministry of Finance and the firm's top management. We suggest that this scheme could offer a blueprint for new practices of-and research on-resistance, if and when such resistance is geared toward achieving systemic change. --- Concluding Comments In troubled times, when new forms of hegemonic despotism are becoming pervasive in the workplace and the concentration of wealth and power continues unabated in global patterns of production and organization, how can resisters make the invisible, visible, and the unspoken, a subject of debate, so as to drive concrete political changes in the living conditions of workers and more broadly, of people and other living beings who are affected by these changes? We believe that our case study of resistance at France Telecom offers relevant theoretical and practical insights on this question, by tracing the sequences of hegemonic transformation that occurred within this firm and beyond, and by highlighting the hybridity of the space of resistance that served to curb hegemonic despotism and to establish new norms and practices at the French workplace. Cutting across the three main pillars of hegemony, that is, the firm, civil society, and the State, was instrumental to the transformative capacity of the hybrid space, as was the engagement of resisters in launching new ways of sharing, generating, and leveraging material and discursive resources, both from within, and by stretching beyond, their established role and position in the three sites of neoliberal hegemony. --- Notes 1. National conferences were organized in December 2007 andNovember 2008, gathering 200 to 300 participants for workshops, debates, and information dissemination. A network of journalists specialized in social issues was formed around the initiative, who commended the work of the Observatory. 2. We gathered anecdotal evidence that such tensions also occurred within civil society, most notably in the media where some journalists faced pressures to stop divulgating-and as a compromise, to euphemize their rendering of-the suicide events at French Telecom company (FT). For instance, in the midst of the social crisis, it was decided at a major French media that the practical protocols by which FT employees killed themselves-which could be, at times, very spectacular-would not be specified in further suicide announcements. --- Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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Mental Health Disparities Among Low-Income US Hispanic Residents of a US-Mexico Border Colonia

Unregulated residential settlements along the US side of the US-Mexico border, often called "colonias", are mainly populated by low-income Mexican-origin Hispanics. Colonia residents face numerous social, environmental, economic and public health challenges. Despite this, the mental health of individuals living in colonias has remained largely understudied. Drawing from a survey (N=98) conducted through a community-based participatory research project in one colonia suffering from numerous environmental and social challenges, this study analyzes residents' mental health outcomes and access to mental health care with a focus on intraethnic disparities based on environmental concerns, nativity, language acculturation, comorbidity, gender, health insurance, and stressful life events. Data were analyzed using descriptive statistics, correlation, and regression. More than one third of the residents have been diagnosed with a mental health condition and over half reported stress and excess worry. In terms of mental health care, 77 % of individuals diagnosed with a mental health problem have sought additional help mainly through a primary care provider despite the high levels of uninsured individuals. Comorbidity, being female, recent negative life events, and high levels of environmental concerns were significant predictors of negative mental health outcomes. This study contributes to the understanding of the complex health dynamics of the US Hispanic population. It also highlights the need for additional research and resources devoted to the mental health of low-income minorities in isolated communities. Keywords Mental health . Colonia . Hispanic . Environmental concerns . Mental health care . US-Mexico border 1 Officially, Westway is a collection of seven colonias (Westway 1-Westway 7; see http://www.sos.state.tx.us/border/colonias/reg-colonias/ elpaso-6.shtml), although residents treat it as one contiguous community.

Introduction Colonias are unincorporated and unregulated peri-urban settlements along the United States-Mexico border that are home to primarily Mexican-origin populations [1]. Colonia residents face unique health challenges due to poverty, lack of access to health care, inadequate infrastructure, and environmental threats. The physical health of colonia residents has been previously examined and researchers have documented significant public health challenges [2][3][4]. In spite of this, the mental health of colonia residents remains largely understudied. Westway, the site of this study of mental health, is a colonia 1 in El Paso County (Texas). In this county in 2010, 86,472 residents lived in 321 communities defined as colonias [5]. Westway is home to about 4000 of these individuals. The population is 97 % Hispanic and 45.5 % are foreign-born, and of those foreign-born residents, only 22.2 % are naturalized US citizens [6]. Westway is located next to Interstate 10, across the ArcelorMittal Vinton steel plant and proximate to other polluting industries such as a scrap metal recycling plant. In Westway, as in other colonia environments, a confluence of challenging socio-environmental conditions contributes to a difficult quality of life for residents and, as a consequence, the potential for high rates of mental health issues and barriers in coping with them. As such, we have two objectives: (1) characterize Westway residents' rates of mental health outcomes and access to mental health care and (2) assess intraethnic disparities (i.e., based on level of environmental concerns, nativity, language acculturation, comorbidities, gender, health insurance, and stressful life events) in mental health outcomes within this impoverished, Hispanic population. --- Health and Environmental Concerns in Colonias Colonias tend to lack basic community infrastructure such as paved roads, sewer system, electricity, gas, clean water, and health care services [1,3,7]. The lack of infrastructure and poverty combines to foster the spread of diseases such as hepatitis, dysentery, and tuberculosis [1]. Poverty also leads to food insecurity and poor nutritional health, which can cause obesity and diabetes, which are common along the US-Mexico border [8]. Chronic illnesses, such as diabetes and asthma, are also prevalent in colonias [3]. Unsafe environmental conditions (e.g., presence of junk yards) have been linked with physical illness in colonias. Underdevelopment and the presence of empty lots sometimes leads both colonia residents and others to dispose of household and industrial wastes in the neighborhoods, creating physical health risks [9]. Ramos et al. [3] found that residents living closer to junk yards or dry cleaners in the Cameron Park colonia in east Texas had significantly higher risk of developing a respiratory illness than those living farther away. In terms of mental health, the focus of this paper, Anders et al. [4] found high rates of mental illness in an El Paso County colonia (not Westway); 20 % of adults had been diagnosed with depression and 17 % had been diagnosed with anxiety. It may also be that the environmental conditions in colonias are correlated with chronic stress and psychological distress, which can permeate the physical and psychological well-being of individuals [10]. Downey and Van Willigen [11] argued that environmental stressors (as chronic stress sources) can have long-lasting effects on the psychological well-being of residents living in industrialized areas. While not studying colonias, Downey and Van Willigen [11] found that Illinois residents living near industrial activity reported higher depressive symptomatology, a greater sense of disorder, and more feelings of powerlessness than those not living close to industrial facilities. Similar findings relating environmental concerns to mental disorders were found in national-level datasets in Spain [12] and Portugal [13]. --- Mental Health and Access to Care for Hispanics Given that colonia residents are Mexican-origin Hispanics, it is relevant to this study that Hispanics have lower rates of mental disorders than non-Hispanic whites [14]. Within the Hispanic population, there are disparities in mental health outcomes, based on three important characteristics: nativity, language acculturation, and chronic physical illness. In terms of nativity, immigrants tend to have lower rates of mental disorders than their US-born counterparts [15,16]. Hispanics that have acculturated to white middle-class norms are more prone to develop mental health disorders. For example, Englishspeaking Hispanics have higher rates of mental disorders [17] than Hispanics who are predominantly Spanish speaking. Those suffering from chronic physical illnesses (e.g., diabetes) are more likely to develop a mental health condition [17]. This fact is concerning in Hispanic populations because they show an early onset and a high risk of developing conditions such as diabetes, kidney disease, and hypertension [18] which often co-occur with depression [19]. Even though Hispanics have lower rates of mental illness, the US Department of Health and Human Services has identified critical mental health disparities that apply to Hispanics, which include reduced access to mental health services, decreased likelihood to receive needed services, and poor quality treatment [20]. In terms of reduced access to needed services, foreign-born, primarily Spanish speaking, recent immigrant, first generation, and uninsured Hispanics showed the lowest rates of access to mental health services [21]. Hispanics who did not speak English received needed mental health services at lower rates than proficient English speakers [22]. Mexicanorigin people with mental health challenges have very low utilization rates for mental health services even when compared to other Hispanic subgroups, like Puerto Ricans [21]. The lack of access to quality care experienced by Hispanics makes them more prone to chronicity and higher levels of impairment due to mental illness [18]. Poor quality of care is reflected in the fact that Hispanics and other minorities' main source of mental health care is primary care physicians rather than specialists such as psychiatrists [22]. --- Other Influences on Mental Health There are other influences on mental health besides the Hispanic ethnic features and industrial concerns previously discussed. These include gender, lack of health insurance, and stressful life events. In terms of gender, women have higher rates than men of major depressive disorder, anxiety disorders, posttraumatic stress disorder, and eating disorders in the United States [23]. Lack of insurance coverage is an important barrier when in need of mental health services, and it might cause a deferment of treatment. Finally, stressful life events (e.g., loss of loved one) are associated with poor mental health because these events can "lead to stress by adversely altering the meaning of persistent life strains" [24]. --- Materials and Methods --- Study Area Westway (see Fig. 1) is home to a low-income population: 49.2 % live below the poverty line, 15.4 % have an income of less than $10,000 per year, and 35 % received public assistance during the last 12 months. Only 55.4 % of Westway residents are in the labor force, mainly in service occupations, sales, construction, maintenance, and transportation [6]. Ninety-eight percent of residents are Hispanic and only 9.4 % report speaking only English at home. Over 64.3 % of Spanish speakers speak English less than very well [6]. For additional demographic information, see Table 1. Westway residents are exposed to numerous environmental hazards. Just across Interstate 10 is the steel plant, which was built in 1962 and emits zinc, lead, and manganese into the air [25]. As such, the elementary school located in Westway was ranked in the second percentile nationally in terms of bad air quality in a 2009 report [26]. Strong seasonal winds in the area provoke dust storms that spread dust from unpaved roads and lots and contaminants from industry. Residents' concerns about the environment led them to request that a team of university researchers conduct a health screening survey in their community [27]; this paper reports some of the results from that effort. --- Data Collection and Participants The first author and an assistant collected the data through door-to-door surveying between March and August 2012. Every ninth household (out of the 1120 lot units in Westway) was asked to participate. If the residents were not home, the neighbors on the left side were asked to participate. We made contact with an adult over 18 at 127 households; 23 declined and one withdrew for an 81 % response rate (n=103). For the analysis, we excluded the one non-Hispanic respondent and four relatively affluent respondents (i.e., those earning more than the county per capita average for income2 ) for a final N of 98 low-income respondents. The survey, translated by the first author and an assistant, both of whom are native speakers of Spanish, was offered in English and Spanish. The survey was designed by the research team through a community-based research process led by the third author. Community leaders were involved in the research process including making revisions and additions to the questionnaire. This study was approved by the Institutional Review Board at the authors' home institution. --- Measures and Analysis The first research objective involves descriptive statistics for a suite of mental health variables and access to care variables. The mental health outcomes include three sets of variables: diagnoses of specific conditions, psychological symptoms [28], and physical symptoms [29]. We utilized a physical symptomatology scale because Hispanics might tend to report physical symptoms in lieu of depression, anxiety, and/or stress [14]. Table 2 shows all variables used in the first research objective, along with information about the survey questions, coding, and descriptive statistics. The second research objective involves correlation and regression analyses. Table 3 reports descriptive statistics and details for how the independent variables (i.e., industrial concerns, nativity, language acculturation, comorbidities, gender, health insurance, and stressful life events) were constructed. We used "industrial concerns" as our measure of environmental concern given the many industrial sources of pollution in the neighborhood and our knowledge of residents' concern about these activities in their neighborhood. Table 3 reports the same information for the four dependent variables. (1) "Mental health diagnosis" is coded 1, if the respondent said "yes" to a diagnosis of anxiety, depression, and/or another mental health illness; it is coded 0 if the person had none of those diagnoses. ( 2) "Stress and excess worry" is coded 1 if the respondent said "yes" to either or both of the questions about ever experiencing stress and ever experiencing excess worry and 0 if the person has never experienced either. ( 3) "Psychological symptoms in the last 4 weeks" was created by factor analyzing (Principal Axis Factoring) six Likert items (see Table 3). Descriptive statistics for the Likert items contained in this factor (and the next one) are included in Table 3, along with the component loadings. ( 4) "Physical symptoms in the last 1 week" was created by factor analyzing (PAF) seven Likert items (see Table 3). After running bivariate correlations between the independent and dependent variables, we ran four regression models including the seven independent variables detailed in Table 3. We used binary logistic models for the dichotomous dependent variables and ordinary least squares (OLS) modes for the continuous dependent variables. Collinearity diagnostics [i.e., variance inflation factors (VIF) and tolerance] revealed that there were no issues with multicollinearity; all independent variables met the standard of a VIF below 2.9 and a tolerance value greater than 0.4. --- Results --- Describing Mental Health Outcomes and Access to Care One third of surveyed Hispanic residents have been diagnosed with depression and one quarter have been diagnosed with an anxiety disorder; 36 % had been diagnosed with at least one of the following mental health issues: depression, anxiety, and posttraumatic stress disorder or had attempted suicide. Nearly 60 % reported ever feeling stressed and excessively worried. In terms of access to care for mental health issues (see Table 2), 77 % of individuals with a diagnosed mental health condition have received health care for it. Of those receiving care for a diagnosed mental illness, 71 % receive care from their primary care physician for their diagnosed condition and 56 % take a medication. Only 7 % have seen a specialist for their diagnosis and 17 % have received a form of psychological therapy. More generally in the sample, 46 % of all respondents did not have health insurance (see Table 3). Of the total respondents, 18.6 % had insurance through their workplace, 20 % had Medicare, and 7 % had Medicaid. Eight percent had other forms of health insurance (e.g., Mexican health insurance) (not shown in a table). Assessing Disparities in Mental Health Outcomes Table 4 presents the results from the correlational analysis between the independent and dependent variables. The following statistically significant correlations were found: Language acculturation was positively correlated with stress and excess worry. Comorbidity was positively correlated with diagnosis of mental health condition and psychological symptoms in the past 4 weeks. Being female was significantly correlated with all dependent variables. Having more stressful life events variable was positively correlated with the diagnosis variables as well as psychological and physical symptoms variables. Finally, industrial concerns were significantly correlated with stress and excess worry and psychological symptoms of distress in the past 4 weeks. Table 5 presents results from the regression models. For the logistic model predicting stress and/or excess worry (Table 5, A), there were three significant (p<0.05) findings and one finding that approached significance (p<0.1). A one-unit increase in the language acculturation scale (which is 1 standard deviation) leads to a 2.5 times increase in the odds of a respondent experiencing stress and/or excess worry. Likewise, females are 2.6 times more likely to feel stressed and/or worried than males. Individuals with one or more comorbid conditions are 2.9 times more likely to experience stress and/or excess worry. A one-unit increase in the industrial concerns scale results in a 2.5 times increase in the odds of a respondent experiencing stress and/or worry. US-born individuals are 0.8 times less likely to experience stress and/or excess worry than foreign-born individuals. For the logistic model predicting a diagnosis of a mental health condition (Table 5, B), there were two statistically significant (p<0.05) findings. Females and those who experienced one or more life events in the past year are both 6.9 times more likely to be diagnosed with a mental illness. For the OLS model predicting the respondent's psychological symptoms of distress in the last 4 weeks (see Table 5, C), four variables were significant at the p <0.05 level. For individuals with at least one comorbid condition, there is a 0.4 increase in the psychological symptoms scale. For females, there is an increase of 0.5 in the scale when compared to males and there is an increase of 0.7 for those who experienced one or more life events in the last year. A one-unit increase in the industrial concerns scale results in an increase of 0.255 in the psychological symptoms scale. For the OLS model predicting the respondent's physical symptoms of distress in the last week (Table 5, D), there were three significant predictors (p<0.05). Females had a score on the physical symptoms scale that was 0.5 higher than males and those who experienced a life event also had an increase of 0.4 in the scale. A one-unit increase in the industrial concerns scale resulted in a 0.2 increase in the physical symptoms scale. --- Discussion In terms of rates of mental health problems, Westway residents have rates of diagnosed depression (29 %) that were more than three times the rates for Texas residents (9 %) and the US population (7 %) in any given year [30,31]. Similarly, their anxiety rates (25 %) are higher than the national rate of 18 % in any given year according to the National Institute of Mental Health [32,33]. Thirty-six percent of Westway residents report being diagnosed with at least one mental illness contrasting with the 18 % of individuals over 18 with any mental illness in Texas and the 20 % of people with any mental illness in the United States [33]. Locally, Westway residents also showed greater rates of diagnosed mental health conditions than the residents of the San Elizario colonias (also in El Paso County, Texas) as previously reported by Anders et al. [4]. They found a 20 % depression rate and a 17 % anxiety rate compared to our rates of 29 and 25 %, respectively. Elevated rates of mental illness in Westway are concerning because if left untreated or undertreated, they can create unnecessary disability and further the economic challenges faced by residents [34] exacerbating inequality. Like the rest of the US population, most Westway residents diagnosed with a mental illness treat their conditions through primary care physicians. Seventy-one percent of those receiving care for depression or anxiety receive it from a primary care provider, which is slightly lower than the national statistics as 74 % of Americans who seek help for depression go to a family doctor rather than a specialist [35]. Twenty-three percent of Westway residents have not received mental health care since their diagnosis of anxiety or depression. It is probable that a lack of health insurance is related to this lack of treatment. Westway residents' most proximate source of health care services is La Fe Clinic, which is located at the north edge of the community. The clinic is part of the Centro de Salud Familiar La Fe Inc., a non-profit organization dedicated to provide health care to underserved individuals in El Paso County. Residents of El Paso County can receive a variety of services at affordable prices from this clinic, which are determined on a sliding scale according to income. The clinic also accepts Medicare or Medicaid. However, La Fe does not have mental health specialists and psychiatry is not included in their list of specialty referrals according to their website. This likely contributes to the lack of specialty care observed among surveyed residents, given that we know that a good proportion of Westway residents, especially the uninsured and those with state-sponsored insurance coverage, use the La Fe clinic for their health care needs. The lack of access to specialty mental health care is a nationwide problem. At the local level, El Paso County has only 823 mental health professionals (and only 27 of these are psychiatrists), which is 107 for every 100,000 people [20]. In the state of Texas, only 34 % of people with mental illnesses receive needed care. The situation is worse in Westway where only 7 % of people with an anxiety or depression diagnosis have seen a specialist. Texas is the state with the least treatment dollars per capita of all states and its mental health care system has received a D grade [36,37]. The United States system also has a D grade. Nationwide, mental health care often lacks a focus on health and wellness; the data on mental health is inadequate and funding is scarce; the mental health workforce is not sufficiently maintained nor developed; and there is a deficiency in cultural competency among providers and a culture of disrespect for the mentally ill [36,37]. In terms of assessing intra-ethnic disparities in mental health outcomes, we found that Westway residents with higher levels of industrial concerns were significantly more likely to experience three of the four mental health outcomes tested here, and the fourth (diagnosis) approached statistical significance. While not the subject of many studies (see only [12][13], the relationship between industrial concerns and mental health problems has been found in diverse social groups ranging from the population of Spain [12] to Westway, Texas. Westway residents have joined efforts with community organizations to address environmental issues in their community. They have participated with the Texas Industrial Areas Foundation (IAF) in El Paso to affect policy in a number of issues including environmental health. The newer IAF group in the region, Border Interfaith (BI), has worked with leaders in Westway to make the Texas Commission on Environmental Quality (TCEQ) aware of their environmental concerns. After several years of pressure, TCEQ has increased their oversight, albeit on a small scale (e.g., additional hours per year) of ArcelorMittal Vinton, one of the industries near Westway [27]. Counter to the literature [14][15][16], being born in the United States is associated with having less stress and excess worry (p<0.05) and a lower likelihood of a mental illness diagnosis and fewer psychological symptoms in the last 4 weeks (both p<0.10) among this colonia population. However, previous studies [14 -16] did not examine excess stress and worry specifically and instead focused on mental illness diagnoses. The association between being foreign-born and higher levels of stress and worry could be attributed to the fact that Westway is located near the US-Mexico border and that there are routinely law enforcement and border protection officials in the area. This police presence could cause stress and concern for foreign-born residents that are unauthorized to be in the United States [38]. Additionally, cartel violence occurring just across the border in Ciudad Juárez during the data collection may have contributed to stress and worry, especially for foreign-born residents, who likely maintained strong ties with relatives in Juárez. The strong presence of law enforcement officials and the cartel violence in Mexico as factors influencing foreign-born border residents to experience stress and worry while living in the US are hypotheses that should be investigated in future research. We found that higher scores on the language acculturation scale predicted experiencing increased stress and excess worry (p<0.05). This is surprising in light of the finding that foreign birth is a risk factor for stress and excess worry, although it aligns with the literature on the health-damaging effects of acculturation [17]. As expected, US-birth and language acculturation are correlated at 0.351 (table not shown). It means that holding constant the effect of nativity (and the other covariates), English speaking was associated with greater stress and excess worry. This reflects other studies finding that greater acculturation is associated with higher rates of mental illness [17]. In Westway, language acculturation approached statistical significance (p<0.11) as a predictor of higher rates of actual diagnosed mental illness. In a study of mental health outcomes post-disaster in El Paso County, researchers also found that language acculturation was a risk factor for a mental health problem (i.e., experiencing depression or posttraumatic stress) post-flood among those whose homes were damaged [39]. Comorbidity was a significant predictor of psychological symptoms in the last 4 weeks, and it approached statistical significance for the stress/worry and diagnosis variables (p < 0.10), aligning with the strong relationship between chronic physical illness and mental disorders previously observed [18]. Given that Hispanics are at increased risk for these chronic conditions that commonly co-occur with depression, this finding is concerning from a public health perspective. Being a female was a significant predictor (p<0.05) of the diagnosis, psychological symptoms, and physical symptoms variables, and it approached significance for stress/worry (p<0.10). This means that poor Hispanic women in this colonia, like women elsewhere, are more likely to experience mental health challenges [23]. Life events were also significant predictors (p<0.05) of diagnosed mental illness, psychological symptoms, and physical symptoms of distress. --- Limitations The main limitation of this study is the small sample size (N= 98 individuals in 98 different households), which is reflective of the small community under study (N=1120 homes). A larger sample could allow for a more sophisticated statistical analysis. Secondly, the Center for Epidemiological Studies-Depression (CES-D) measure [40], which is one of the most widely used instruments to measure depressive disorders, was not used in this study, limiting its comparability. Third, while beyond the scope of this community-based participatory project, we did not collect information about when the person was diagnosed with their mental illness and his/her healthcareseeking experiences. Last, studies with Hispanics of more diverse backgrounds could also provide more information on how ethnicity impacts mental health outcomes. --- Relevance Despite the numerous challenges facing individuals in colonias, their mental health has remained understudied and unaddressed by policy makers and activists. Mental illnesses can be debilitating and they further risk for physical illness complications [41] and economic decline [34]. Hispanic residents of this colonia had high rates of mental health challenges and few resources to deal with them; residents' per capita income was one quarter of the US average and half lacked health insurance. As the Hispanic population in the US continues to grow, it is becoming increasingly important to understand the complexities of Hispanic health [39,42]. This case study in a US colonia contributes to that goal by illustrating the health challenges and disparities present within this group of largely Mexican-origin, low-income Hispanics. Even within this socially marginalized group, mental health disparities were present with respect to environmental concerns, nativity, language acculturation, comorbidity, gender, and life events. These findings underscore the importance of considering intra-ethnic disparities in Hispanic health outcomes. The findings also highlight deficiencies in mental health care in the US, especially for low-income, peri-urban residents, such as those in Westway, and point to the need for increased access to mental health care at charity clinics serving poor populations. --- Conflict of Interest Guadalupe Marquez-Velarde, Sara Grineski, and Kathleen Staudt declare that they have no conflict of interest. Informed Consent All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study. No animal studies were carried out by the authors for this article.