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introduction the formulation of national education goals in law number 20 of 2003 mostly discusses forming attitudes and values multicultural diversity 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 indepth in the end this process is expected to bolster the improvement of human resources and the students cognitive psychomotor and affective skills the government plays the integration of local culture into the national education curriculum through ministerial regulation no 792014 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 is nationalscale 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 in addition such cultural diversity is linked with formal events eg 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 cultures 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 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 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 primaryislamic 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 students understanding of the potential of the area where they live mulyasas perspective 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 a study conducted by achmad basari in 2014 entitled penguatan kurikulum muatan lokal dalam pembelajaran di sekolah dasar concludes that the schools 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 teachersschool 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 unitlevel 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 charactersattitudes 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 needsdemands of the region the method of identification and analysis was adjusted to the teams 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 entrepreneurship prevocational environmental education and other local specialties 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 nations 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 i developing basic competencies referring to the core competencies j compiling local content syllabus the data came from community leaderstraditional leaders school members 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 or in other words all primary schools in banggai regency from the data on the kemdikbudgoid on the other hand the accessible population was primary schools in the districts that lived by most indigenous people of banggai regency ie balantak and saluan and those in luwuk as a comparison accordingly primary schools becoming accessible to the population were those in balantak district kintom district 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 needsdemands 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 ± 967270 km² or around 1422 of the total area of central sulawesi province and a sea area of ± 2030968 km² with a coastline of 61325 km administratively banggai regency is divided into 23 districts 291 villages and 46 subdistricts 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 unauna 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 500700 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 ie kepulauan banggai laut morowali tojo unauna 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 agricultureplantation fishery industry and tourism nevertheless some obstacles arise along the way ie 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 regencys 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 9398 of all villagessubdistricts 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 reducing the unemployment rate the leading plantation production in this regency is oil palm plants with a production of 7071955 tons crops that need improvement in planting and production are flatleaved vanilla producing 150 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 ± 2030968 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 ± 61325 km the sustainable potential of marine fisheries is ± 486211 tons per year consisting of pelagic fish with ± 393879 tonsyear and demersal fish with ± 92392 tonsyear the regency also possesses an aquaculture area of ± 8825 ha the cultivated types are tiger prawns 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 ± 6396 ha of which ± 78800 m² has only been utilized for seaweed cultivation cultivation of groupersfloating cages scylla crabs 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 with 14067 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 nonmetallic mineral mining materials or nonmetallic mineral materials 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 agriculturalplantation 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 agricultureplantation fisheries industrycrafts and tourism this process is expected to provide knowledge to the students in utilizing their natural resources eg improving the use of agriculturalplantation 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 and transformative social beings 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 aspectspotentials of local content this aspect can positively and negatively impact the quality of local content to be developed depending on the peoples 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 seniorislamic senior high schools 142 juniorislamic junior high schools 385 primaryislamic 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 172670 people 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 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 seasea tribe apart from the language tribes inhabiting the banggai regency have cultural diversity that still exists today such as tumpe sumawi andeande 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 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 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 regions 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 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 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 sociocultural 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 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 humans perspective education is fundamental to students learning process in a universal setting education positively affects developing and cultivating the students 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 affective aspect and psychomotor aspect 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 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 selfcontrol 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 regions 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 nationregion 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 and keramat valley 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 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 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 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 schoolbased 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 chamsiatin 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 the hierarchy of scientific disciplines or material difficulty levels the linkage of competence standards and basic competencies between subjects the review of basic competencies and identifying the main materials reviewing main materials needs to pay attention to the level of students physical intellectual emotional social and spiritual development benefits for students scientific structure the depth and flexibility of materials the relevance to students needs and environmental demands and time allocation next is 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 selfreport 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 physicalsocialpsychologicalcultural 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 indepth 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 indepth 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

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 needsdemands second an analysis of local culture which will be developed in the basic education curriculum includes four clusters of local content covering socioculturalpolitical economic environmental and other localspecific 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 number of deaths worldwide due to the covid19 pandemic has exceeded 3 million as of april 20 2021 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 9629 deaths in japan a 2 mortality rate thus the number of covid19related deaths has been relatively lower in japan than in the western countries where the infection has exploded 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 covid19 pandemic pre and postfacetoface family contact with loved ones is limited in in order to prevent infection the suddenness and unpredictability of bereavement due to covid19 makes it challenging to establish advance care planning a key component of effective terminal care bereavement due to covid19 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 because of these peculiarities there is concern that bereavement due to coronavirus infections may increase psychological risks such as complicated grief and depression 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 in the early stages of the pandemic public awareness regarding covid19 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 covid19a popular comedian and a famous actressin 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 covid19 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 covid19 were not allowed to bid goodbye to the deceased before death or see them facetoface even after death second the impact on endoflife 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 we shall discuss efforts to address these issues in japan potential psychological concern regarding bereavement due to covid19 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 covid19 could lead to psychological problems such as prolonged grief and ambiguous loss one which is without closure or clear understanding of why it occurred in order to prevent the spread of covid19 in japan it was recommended in principle that visiting a person at the end of life with covid19 infection should be prohibited not being present at the death of patients with covid19 infection impedes the usual farewell rituals conducted for the deceased by the bereaved for example touching the deceaseds body helps those bereaved to realize that their loved one has actually died not being present at the end of a persons life and not being allowed to touch the body potentially interferes with the mourning process and increases the risk of prolonged grief in the netherlands it was noted that grief levels were higher among people bereaved due to covid19 than those who had lost loved ones due to natural causes traumatic bereavement is more likely to occur when the death of a loved one is sudden or unnatural such as when a loved ones body is damaged it is accompanied by regret anger and guilt over death traumatic bereavement is a risk factor for ptsd and depression as well as prolonged and complicated grief these symptoms after bereavement often cooccur and share common features but many epidemiological studies support their distinctiveness since bereavement due to covid19 shares the common feature of traumatic bereavement systematic psychosocial support is needed psychological therapies such as cognitivebehavioral therapy optimized for each symptom have been shown to improve ptsd grief and depression after bereavement although japan has yet to report any empirical studies on grief after bereavement due to covid19 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 covid19 after attending funerals being in close physical proximity with friends or others may produce feelgood hormones such as oxytocin dopamine and serotonin 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 an ambiguous loss is an indefinite loss that persists without resolution or closure such as when a loved one is missing or physically present but psychologically absent ambiguous loss differs from ordinary bereavement in that there is no definitive information or finality in japan guidelines regarding covid19 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 endoflife 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 covid19 nursing practice guide for critically ill patients version 1 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 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 similar effortsmaking videoconferencing possible in endoflife care settings when patients cannot see their families facetoface because of the pandemic 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 from the perspective of preventing infection during transportation and cremating the bodies of those who have succumbed to covid19 the japan medical associations implementation manual 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 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 which nurses generally perform when patients die in japan however version 2 of the covid19 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 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 the impact of restricted endoflife care visits for noncovid19 inpatients japan has been a superaged society since 2007 in 2019 284 of the population were 65 years and above and 47 were 85 years or older in the 1950s more than 80 of people died at home in japan in 2017 more than 80 of patients died in hospitals or institutions despite nearly 70 of them wanting to die at home fewer people die at home because of the increasing trend toward nuclear families which has led to a decline in family relationships 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 it is necessary to improve home medical care in presentday japan to achieve endoflife care at home but only 5 of all medical institutions could support it in 2014 for these reasons many patients choose to receive endoflife care for diseases other than covid19 in a medical facility or palliative care however many hospitals now restrict visits to noncovid19 inpatientsa necessary and natural measureto prevent nosocomial infections there is a concern that these measures will result in a situation where terminally ill noncovid19 patients will not be provided with adequate endoflife care one of the risk factors for prolonged grief and ptsd after the death of a covid19 patient is the bereaved familys inability to say goodbye to the deceased since family members of noncovid19 inpatients have restricted visitation the same psychopathological risk can be assumed for them 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 endoflife 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 in one such case based on a nurses suggestion a leukemia patient who was prepared to die in the hospital could go home and spend the next 10 days with his family in some areas the number of individuals switching to endoflife care at home has nearly doubled compared to previous years cases of endoflife care at home have also been reported in the uk and portugal in portugal most families encourage terminally ill patients to stay at home for an extended period although in some cases family members were unable to visit their hospitalized relatives freely during the covid19 pandemic they asked individuals called endoflife caregivers from some organizations such as hospices to provide endoflife care for terminally ill patients living alone in japan conversely some physicians involved in palliative care have expressed concern about suggesting endoflife care at home it is necessary to consider the situation of families who have difficulties or anxieties about administering endoflife care at home and seek gentle and heartwarming endoflife 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 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 although endoflife care has been discussed as an issue for medical care in superaging japanese society covid19 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 endoflife care response to bereavement due to covid19 in japan lessons learned from past major disasters japan experienced an extremely high level of loss in the great east japan earthquake of 2011 which led to the development of academic and public health efforts to deal with grief these were also deployed during the covid19 pandemic for example the japan disaster grief support project established after this earthquake and implemented in may 2020 provided griefrelated psychoeducational materials for the bereaved musashino university the national center of neurology and psychiatry and others developed several treatmentprevention programs for prolonged grief which have been shown to be effective in other countries too based on empirical evidence these include complicated grief treatment and its japanese version along with group cognitive behavioral therapy for the bereaved with the distress of grief less severe than complicated grief since facetoface therapy is limited during the covid19 pandemic to provide such services it would be necessary to devise programs including webbased grief treatment and videoconferencing psychotherapy we provide a modified treatment program for patients in whom facetoface treatment at an institution had to be interrupted as a preventive measure against covid19 even before the covid19 pandemic the uk and us 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 postcorona era data availability statement the original contributions presented in the study are included in the articlesupplementary material further inquiries can be directed to the corresponding authors 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

this commentary discussed the psychological issues related to bereavement in the wake of the covid19 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 covid19 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 covid19 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 endoflife care in such circumstances and in the postcovid19 era as in current day japan

the past four decades have witnessed a plethora of studies on genderrole portrayals in advertising on television from the perspective of marketers and advertisers gender is a primary segmentation variable in developing marketing strategies and defining target groups also gender portrayals have possible effects on corporate images and on purchase intentions of consumers from the perspective of activists advertising councils or policy regulators however the stereotypical depiction of men and women in todays ads is problematic for many reasons it is argued that advertisers create and perpetuate gender stereotypes which may erode gender equality and harm society at large the accumulated empirical evidence clearly suggests that gender roles are highly stereotypical in television ads however despite this strong research tradition around the world it is less clear how a countrys 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 singlecountry studies 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 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 most of these studies have relied on one or two comparative gender indices 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 which is a clear limitation in terms of detecting cultural patterns in fact only paek et al looked at television advertisements across seven countries and used hofstedes masculinity dimension and the gender development index to explain genderrole portrayals although paek et als 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 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 unclearas with most content analytical researchhow 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 countrys score on a cultural dimension should help to explain the degree of gender stereotyping unfortunately such a multilevel analysis is not known to have been conducted in extant research therefore the aims of our study were to observe genderrole 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 and various other gender indices at the same time genderrole portrayals in advertising research on gender role portrayals in us television advertisements started in the 1970s followed by research in great britain and europe in the 1980s and in asia in the 1990s generally this research has led to the consensus that gender roles are highly stereotypical in television advertisements 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 some research has indicated a relation between hofstedes masculinity index and the gender predominance of the primary character whereas others found the predictive role of hofstedes masculinity index to be minimal we thus hypothesize that there will be more men than women depicted as primary characters in our analyses the age of the primary character is another widely studied variable most studies report a predominance of women in the younger age segment whereas more men were found in the middle and older age segments in a metaanalysis eisend 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 furthermore the predominance of male voiceovers is one of the most consistent findings in the literaturea predominance that is even more pronounced in asia compared to other regions previous research has indicated that a higher score in hofstedes masculinity index increases the odds of a male voiceover thus we predict that there will be more male voiceovers compared to female voiceovers in television ads 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 for men product associations were less clear but some studies found associations between men and television advertisements for cars telecommunications electronics technology and computers 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 whereas male characters will be associated more with telecommunications electronics technology computers or cars the setting is another variable that has often produced clear gender divisions most often cited is the association of women with a home setting a metaanalysis shows that the odds of women being depicted at home are approximately 35 times higher than for men another finding that was similar across most of the literature is that more men than women are shown in a workplace setting therefore we hypothesize that female primary characters will be more likely to be depicted in a home setting whereas male characters will be more likely to be shown at work in addition to these commonly analyzed variables we focused on the working role of the primary character although categorizations differed several studies investigated whether the primary character was working or was a homemaker 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 cultural models gender indices and advertising to fully understand genderrole portrayals scholars have repeatedly pointed to the important role of cultural differences the most widely applied cultural model in advertising research is hofstedes cultural dimensions including four dimensions power distance individualismcollectivism uncertainty avoidance and the masculinity dimension the most relevant dimension for the purposes of the present paper is hofstedes masculinity dimension which has been used in crosscultural content analyses on gender in advertising including studies comparing two countries and some comparing three or more countries however only a few studies have confirmed an association between the masculinity index and gender portrayals whereas more studies have led to mixed results or to results that were mostly opposite from those predicted by hofstedes masculinity index considering the mixed results of previous research in general and criticisms of hofstedes study in particularas being rather outdated and for its masculinity dimension that mixes two subdimensions it is crucial to use additional indices such as the more recent framework from the globe project its theoretical importance and promise have been mentioned in several articles on theory in advertising research still the globe study has been used rarely in gender stereotyping research to date in contrast to hofstedes 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 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 although hofstedes masculinity index influenced the globe project 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 gender egalitarianism reflects societys beliefs about whether biological sex should determine roles in society gender egalitarian societies rely less on biological sex to make those determinations 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 globes dimensions in advertising research only a few studies to date have employed them these studies have included the dimensions of assertiveness performance orientation and humane orientation 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 countrys gender development paek et al found that the predictive role of the genderrelated development index by the united nations development program 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 metaanalysis eisend used another gender index created by the undpnamely the gender empowerment measure and found a correlation between the gem and gender stereotyping in advertising our research extends these studies by testing whether the gdi the undps gender inequality index which replaced the gem due to criticism and the world economic forums gender gap index can predict gender stereotypes 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 and labor market participation and the gggi is the most inclusive being based on gender gaps on economic political educational and health criteria furthermore besides hofstede our study uses globe for the first time in the extant research on gender portrayals as a theoretical framework 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 predict genderrole portrayals in television advertising method we analyzed gender role stereotypes across asia america and europe 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 hofstedes masculinity index and with a low score as well as countries with a high score on globes gender egalitarianism index and a low score 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 studentscoders the most recent data from all gender indices were used in may 2014 15 h of primetime 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 countryspecific regulations of publicservice 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 cctv1 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 we started the recordings after mothers day in most of the recorded countries to ensure that no large countryandor regionspecific events occurred during the days of recording we focused on prime time because it was commonly used in previous studies because the definition of prime time varied by country we used the most inclusive definition like in most prior research duplicate ads political ads ads for films and cds public service announcements 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 germany the united kingdom the united states france spain brazil netherlands romania slovakia china japan and south korea coding procedure and reliability the codebook was adopted from prior research the following categories were included in the analysis primary character product category voiceovernarrator age dominant setting and working role these are standardized measures in this research 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 compensationcourse 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 krippendorffs alpha one test was between coders for different countries on englishlanguage 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 voiceovernarrator age dominant setting and working role this was still above the recommended chancecorrected agreement of 60 by neuendorf 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 507 of the characters were women as can be seen in table 1 in some countries 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 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 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 the share of male voiceovers was in fact significantly higher than the share of female voiceovers 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 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 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 are needed multilevel models are warranted when cases are clustered within countries the advantages of multilevel analysis are that we can explain the individuallevel 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 nonlinear model with the logitlink function using pql estimation with the statistical package hlm 7 the level1 model includes the gender of the primary character the level2 model includes the respective index because the level2 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 upperlevel variance is significantly different from zero for the age of the primary character the product category body and cleaning products the product category technical products and cars working role shown and the status of the average level of a gender index for most outcomes the level1 effect of gender was statistically significant confirming hypotheses hypothesis 2 hypothesis 4a hypothesis 4b hypothesis 5a and hypothesis 5b 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 yet female primary characters were less likely to be depicted in any working role compared to their male counterparts beyond the effects of the level1 predictor the main focus of the multilevel model lies on the crosslevel 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 randomcoefficients model for the dependent variable age of the primary character no systematic differences in the regression slope between the countries were observed the same was true for the dependent variables of product category body and cleaning products setting home setting work presence of a working role and status of the working role however for the category of technical products and cars there was a statistically significant variation that could be explained by level2 variables 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 crosslevel interactions for all five gender indices that is none of the five gender indices was able to explain why there was a stronger 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 genderrole portrayals in advertising and it is the first known with sample equivalence using comparable tv programs to illuminate the effect of culture on genderrole 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 genderrole variables as dependent variables we have found significant differences among the countries investigated although every country showed traditional genderrole portrayals for some variables some countries showed nontraditional genderrole portrayals for several variables and thus seem to use a more genderequal 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 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 genderrole portrayals than others for example for more than half the countries the variables of voiceover age toiletrieshousehold 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 eisends metaanalytic 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 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 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 genderrole portrayals may still vary across cultures in some cases they may become more universal due to global markets and networked publics fourth our study used equivalent samples in all countries which is not possible in a metaanalysis such as eisends 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 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 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 genderrole 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 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 genderrole stereotypes in society further perpetuating gender roles and gender inequality 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 womenin terms of gender equalityin 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 there was no significant amount of variance for the depicted setting home and for the depicted setting work the results of the multilevel model are presented in table 5 because we included the grandmeancentered terms for the gender indices the effects of gender on the outcome variables must be interpreted as the effect of gender at the

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 homeor 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 countrys gender indices including hofstedes masculinity index globes 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

background workplace violence is defined as any event that results in harm caused by workrelated assaults threats and abuse whose impact on the victim may lead to a deterioration in health safety and wellbeing 1 workplace violence 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 18000 are assaulted each week while at work 2 similar figures are provided by european reports 3 fortyeight per cent of nonfatal workplace violence incidents take place in the healthcare sector 4 about 50 of healthcare workers experience workplace violence in the course of their career 56 healthcare workers have a 16 times greater risk of suffering workplace violence than workers in other sectors 7 nurses are more at risk 89 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 20052009 show a rate of workplace violence of 511000 for all occupations 1011000 for physicians and 811000 for nurses for mental health workers the violent victimisation rate was 2051000 second only to the rate of law enforcement officers 13 in belgium a study on patientphysician 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 carmiilluz 15 compared the risk of violence between a sample of hospitalbased physicians and a sample of communitybased 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 workrelated homicides of physicians in italy over the past 32 years methods we relied on the main national statistical databases 17 18 19 and on pubmed to trace all cases of workrelated 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 provides annual bulletins on homicides and other type of violences disaggregated by determinants such as region gender and age and type of work we accessed the annual bulletinspecific databases to obtain te aggregate number of healthworker 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 socioeconomic 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 healthcare 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 epidemiological studies of any health outcome and of any study population as well as of any design including crosssectional casecontrol and cohort studies were considered two reviewers evaluated the eligibility of studies in case of discrepancy a third reviewer provided arbitration the initial search provided 13 nonduplicate 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 workrelated 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 10year 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 firearms and other while the locations of the homicide have been classified as communitybased clinics hospitals street perpetrators home and victims home in addition to their gender the offenders have also been classified according to whether they were psychiatric patients or not a further distinction concerned the type of patient and motive results from 1988 to 2019 21 physicians were killed in workrelated circumstances in italy which means around 07 physician killed per year slightly more than 20000 overall homicides have been carried out in the same timeperiod in italy the victims were more often male with a higher concentration in age group 5060 geographically the homicides were more prevalent in southern italy with 571 of cases while only 95 were recorded in central italy and the remaining 333 in northern italy as to method 476 of the homicides were committed with firearms and 429 with sharp instrumentsknives in one case a blunt weapon was used in another case the method was poisoning with regard to location about half of the homicides took place outside hospitals mainly at gps surgeries or outofhours primary care services the most common locations accounting for 286 of cases were gps and outofhours surgeries next come mental health outpatient clinics making up 190 of locations a further 190 of murders occurred in the street while 143 of cases occurred at the victims home three cases took place in hospitals one homicide took place at the offenders home with regard to the victims medical specialties the most common was psychiatry with an incidence of 286 this is followed by 4 murders of gps 3 of primary care doctors in the outofhours service and 2 murders of urologists the remaining cases involved a forensic doctor an anatomopathologist a general surgeon a gynaecologist an oncologist and a neurosurgeon in 524 of cases the perpetrators were patients under the victims care while 190 were occasional patients the remaining 286 were family members of the victims patients these latter six cases were all driven by revenge specifically 4 of the perpetrators who were family members sought revenge for the patients death in 2 out these latter 4 cases the perpetrators were two fathers seeking revenge for the death of their little girls in 667 of the cases recorded the motive for the murder was revenge without previous threats in 2 cases the motive was a worsening of the murderers 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 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 the motive was revenge preceded by the offence of stalkingthreats specifically 2 cases were passionrelated 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 238 of cases are not explained by either passion or revenge indeed 3 murders were committed in the outofhours general medical facilities by occasional patients while 2 other cases took place at mhc outpatient clinics analysis of the data collected also shows that in 143 of cases the homicide was followed by the offenders suicide and in 95 the perpetrator killed more than one person lastly 428 of the perpetrators had a psychiatric disorder while the remaining 571 had no diagnosed disorders at the time of the homicides 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 reported that 69 healthcare workers 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 doctorpatient 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 while the other murders took place outside the hospital in particular a significant number of murders occurred in outpatient settings while still others occurred at the patients home at the doctors home or in casual places in a particularly striking instance the patient took a revenge on the doctor he sent a poisonlaced bottle of wine as a christmas gift to the victims home for the christmas holidays causing the doctors 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 2627 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 doctors regular patients but also patients family members and occasional patients with regard to the authors of violent acts in the workplace rippon 28 identifies several categories patients family members visitors and coworkers in turkey a study found that 645 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 2430 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 patients family member or an occasionaldropin 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 doctors or the patients 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 lowsecurity inpatient settings in contact with vulnerable patients 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 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 noncompliance with their medication 24 31 32 33 34 35 however it should also be noted that individuals 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 gellibianco 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 nonviolent 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 competing interests the authors declare that they have no competing interests

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 workrelated killings of doctors methods workrelated homicides of doctors over the period 19882019 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 doctors patients in 29 n 6 of cases it was a patients 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 doctors home in 14 n 3 the hospital in 14 n 3 and the patients 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 667 n 14 of cases in 286 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

introduction why should we cherish objectivity as if ideas were innocent as if they dont 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 dont want to be objective if it means pretending that ideas dont play a part in the soaltchi confronting power in hci chi4good chi 2016 san jose ca usa cial struggles of our time that we dont 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 crossexamining 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 jobs satirical misquotes 2007 this paper is a polemic as such it makes no pretense at remaining neutral as engineers and designers its 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 lets age tommy to 3 years old tom and sara take him skiing for the first time tommys smartphone now version 230 downloads the virtual skiing coach which uses accelerometers sewn into tommys 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 p57 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 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 its 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 then lets 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 its 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 1018 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 a more thoughtful and constructive treatment of this problem space is given by raghavan 23 in his discussion of how sevareids law 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 its 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 the psychological importance of the smartphone cluley and dunne 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 p114 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 selfpresentation and copresence seeing and being seen as a social subject in real brickandmortar 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 p115 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 in contrast with its role as a gateway to the other 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 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 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 barbrook and cameron 3 within this context the smartphone is a political tool something that fights authoritarianism such as in the arab spring 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 and know everything about individuals 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 timespace but also marketed as essential to the workers cultural identities something the workers must have but must not question p910 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 als 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 als 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 takeup occurs no interest is shown by commercial players theres 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 cant share them they store all your personal data 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 laissezfair 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 its nature a politics that attempts to deny the existence of politics its not about the group its not about society its 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 p433 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 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 currentand future societal impact of interactive technology however these efforts are all too often relegated to the alternative venue of altchi or squirreled away as sexy sounding but all too niche design fiction workshops 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 underserved underresourced and underrepresented 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 cant 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 industrial designer and the user the laboring hands that assemble devices for consumption on a factory floor somewhere in asia or subsaharan 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 its 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 altchi paper

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 smartphones 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 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 12 in the field of education this phenomenon has been international 34 the case of the usa is significant as this is one of the most recurrent research topics in the last fifty years 56 since dunn 7 highlighted the overrepresentation in special education of not only migrant children but also children from social minorities and nonmiddleclass 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 childrens 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 nonviolence 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 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 nondiscrimination equal opportunities and respect for human diversity similarly it recognises people with disabilities as full rightsholding 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 1112 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 1718 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 32020 also known as the lomloe which establishes the structure and services for students with special educational needs 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 shehe must have gone through a process of identification and valuation of herhis 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 2425 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 3132 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 the topic of migration received considerable attention in the 1990s 38 from the mid1980s 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 5375917 migrants lived in spain of whom 775936 were from morocco representing 144 of the migrant population ie 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 and latin america in the academic year 202122 a total of 882814 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 20202021 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 academic training and 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 1442 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 1664 years had not completed primary education and only 3 had completed higher education 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 4445 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 31384647 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 uptodate 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 mostly moroccan in special education centres in the region of el campo de gibraltar 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 funded by the university of cádizconvocatoria proyectos puente the project analyses the different education stages 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 to this end a qualitative methodology was followed based on the interview technique this study was conducted from an ecologicalcultural and inclusive approach 4849 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 • education centres with a larger number of students from a migrant background with disabilities compared to other centres instrument for the gathering of information two ad hoc semistructured 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 openended questions individualised interviews were developed for the counsellors of the egt the principals the teachers and specialists in therapeutic pedagogy and hearing and speech and the social integration technician 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 facetoface 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 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 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 bachelors 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 masters degree in early intervention finally i entered an early intervention centre in malaga as an interim and thats the training i have regarding education afterwards i studied conflict resolution but just a little bit masters degrees are poorly guided at least in my experience to work with this type of student 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 due to the great presence of migrant people generally few courses related to migrant students are offered and these are focused on teaching spanish 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 dont really remember any of that 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 the language specialist comes once a week thus with so little time this specialist cant work adequately with these students and their tutors cant be counselled about working with them in fact the work with the language specialist begins in year 4 of primary education we need some sort of resource such as a translator in these centres where there is a high percentage of migrants 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 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 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 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 wouldnt establish a totally different diagnosis even the coordination with social services is poor especially in year 2 and year 3 where i have the most students i didnt count them i dont 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 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 cant ask the children questions if you cant interview them if you cant 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 its very difficult to make a correct diagnosis 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 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 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 dont understand well in many cases the mothers attend the tutorials less frequently and the fathers are usually the heads of the families for example last year in secondary education i observed this stereotype toward women students aged 13 14 and 15 years who literally told me youre a woman what can you say about this when i evaluated them they didnt really pay attention to me because im a woman they have that rooted in them even when some mothers attend if the father is not also present they dont want to listen to me 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 yes they are very grateful for having their children in the centre they are very happy 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 62133 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 1443 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 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 familyschool 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 4546 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 65354 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 to attend to the realities of this type of centre 128 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 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 62737 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 833 motivated by the existence of biased evaluations and subjective decisions made by educators 11920 however the factors that contribute to this phenomenon are complex and multifaceted and no resolution has been developed to fully address it 67192145 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 638 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 1113 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 5859 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 nonspanishspeaking 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

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 semistructured 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

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 123 yet transgender men obtain cervical cancer screening less frequently and are less likely to be uptodate on pap tests than cisgender women 4 according to the 2015 us transgender survey although transgender men are vulnerable to chronic undetected human papillomavirus 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 lifesaving 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 but i still had other body partsuterus ovaries fallopian tubes vagina and cervixthat 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 therapyin my case testosteronetransgender 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 didnt 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 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 didnt know if anyone would take me as a patient id had negative experiences with clinicians and staff in the past so even if someone would see me i was worried about how id be treated i gained courage by having a female friend call her obstetricians gynecology office and ask if anyone would see a trans man as a patient the office responded weve 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 didnt have experience diminished my anxietya 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 mans 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 wasnt 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 youre 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 traumainformed care model can help alleviate transgender mens anxieties about having their body parts examined and their experience of dysphoria or discomfort 910 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 pediatricsized 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 patients 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 genderlinked procedure like a pap test or genderlinked body parts like a cervix its helpful to trans men patients when clinicians explain to the billing department the organspecific 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 documentationincluding drivers license birth certificate and insurance cardaffirmed 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 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 didnt find this alarming because my clinician explained that my longterm 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 dont have penilevaginal 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 genderrelated 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 14151617 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 selfcollected vaginal swabs 1819 clinicians should offer and provide selfcollection 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 clinicians 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 had no conflicts of interest to disclose the viewpoints expressed in this article are those of the author and do not necessarily reflect the views and policies of the ama copyright 2020 american medical association all rights reserved issn 23766980

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

introduction since 2000 china has experienced rapid aging of its population and is a trend that is predicted to continue well into the future according to the seventh national population census data by the end of 2020 1870 of the population in china will be aged 60 years and older the fourteenth fiveyear 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 highquality 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 9064 pension service model has been formed this shows that community care services play a crucial role in chinas pension system 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 homebased 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 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 andor 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 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 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 how processes and quality can be improved and how older peoples satisfaction with services can be enhanced however there is limited research on the impact of community care services on older peoples 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 highquality and convenient services and thus positively impact their psychological health an additional question was whether this impact differs for subgroups 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 21 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 proposed that use community facilities and resources to provide longterm 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 emphasized the critical role of psychological counseling and emotional assistance in caring for older people connelly divides the content of community care into four types the first is life care the second is material support the third is medical support and the fourth is overall care definition of psychological health the world federation for mental health defines psychological health as developing ones mood into the best state within the range of physical intelligence and emotion that is not inconsistent with other peoples mental health the world health organization summarizes three characteristics of psychological health good personality good ability to handle affairs and good interpersonal relationship wu 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 peoples psychological health from a single perspective of subjective psychological feelings siebert et al reported that loneliness depression subjective wellbeing and life satisfaction are sensitive indicators that can be used to quantify older peoples 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 social relationships and economic conditions regarding physiological factors jorunn studied the relationship between the ability to perform activities of daily living and loneliness in older people through structured interviews in a rehabilitation center and concluded that adl functions could reduce loneliness jacobs et al 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 found that the social support of family neighbors and friends affects the subjective wellbeing and mental health of older people by affecting their selfesteem and reducing loneliness regarding economic conditions saber reported that the level of economic income significantly impacts older peoples 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 multistage 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 peoples 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 peoples psychological health therefore the four indicators of loneliness cognitive ability life satisfaction and participation in activities were selected to measure older peoples psychological health loneliness is a sensitive indicator of psychological health with which it is significantly negatively correlated and the higher an individuals psychological health the lower the perceived loneliness the question do you often feel lonely was included in the questionnaire which was answered using a 15 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 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 peoples subjective wellbeing and song et al 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 15 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 peoples psychological health participating in activities was assessed by the question do frontiers in public health 04 frontiersinorg 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 15 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 participants personal characteristics behavior habits economic status and family status including age gender living conditions marital status physical exercise disability and economic situation empirical models 331 confirmatory factor analysis in this study four variables loneliness cognitive ability life satisfaction and participation activities were used as indicators of older peoples psychological health in contrast older peoples 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 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 peoples mental health was significant and to verify whether the measurement of older peoples mental health was valid structural equation model 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 in this study the explanatory variable community care service was an explicit variable and the explanatory variable older peoples 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 peoples psychological health is shown by the formula η α ζ γx the measurement model is shown in formula y µ γη in formula η is a latent variable indicating older peoples 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 peoples 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 y is a group of indicator variables for older peoples psychological health this study used four indicators loneliness cognitive ability life satisfaction and social activities ε indicates the measurement error item 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 403 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 652 indicating that respondents had high overall cognitive ability and normal intelligence the average life satisfaction score was 388 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 963 which indicates that participants had less contact with people and were not fully involved in various social activities according to the social withdrawal theory peoples 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 083 057 037 028 021 017 015 and 012 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 maslows 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 cronbachs α of each study variable was above 06 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 0067 and srmr 0039 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 peoples psychological health with an impact coefficient of 072 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 038 026 and 022 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 peoples 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 peoples 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 robustness check considering that older peoples psychological health is also affected by other factors this study also added control variables to the following models and 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 peoples 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 008 srmr 005 and r 2 ≈ 07312 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 peoples 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 nondisabled older people and have a significant positive impact on the psychological health of disabled older people but no significant impact on nondisabled 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 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 lowcost 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 medical and health services were found to have a positive impact on the psychological health of nonsolitary 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 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 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 andor 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 nonsolitary 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 nonsolitary 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 frontiersinorg and entertainment services this analysis result is consistent with other chinese scholars research reports for example wu 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 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 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 peoples psychological health in liaoning province overall community care services have a significant positive impact on older peoples psychological health which is consistent with previous research 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 which confirms the conclusion of this study in addition this study indicates that living conditions disability and older peoples 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 highquality 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 peoples 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 peoples 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 communitybased elder care model and improve the psychological health status of the older population first provide comprehensive and highquality community care services for older people focusing on improving the quality and coverage of spiritual services research shows that with the development of chinas economy and society older peoples 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 peoples 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 ie those who are solitary disabled andor 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 articlesupplementary 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

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 peoples 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 eg meal services medical and social care participants demographic details age gender economic circumstances etc and their psychological health eg loneliness life satisfaction the impact of the various care services on older peoples 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 subgroups of older people eg those who were disabled socially isolated andor poor was differentit is necessary to provide comprehensive and highquality community care services organize diverse cultural sports and recreational activities provide differentiated and specific services for older people and formulate corresponding service guidelines

parent training is one of the most widely studied costeffective interventions known for reducing or preventing child mental health disparities through the promotion of effective parenting strategies 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 in response researchers developed the korean parent training program this program addresses parenting factors related to child mental health problems and can be delivered in the context of korean culture and faith faithbased health promotion program can be effective for kas because 70 to 85 of them regularly attend ka churches the purpose of this study was to pilottest 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 us children experienced similar problems ka children also scored significantly higher on depressive symptomatology than european american children recent studies found 60 of ka adolescents had depression symptoms compared to 24 of european american adolescents 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 huggingkissing and saying i love you and correcting misbehaviors in contrast risk parenting factors included parental rejection physical punishment intergenerational acculturation conflicts and parental depression parental rejection was related to childrens behavior problems and social competence and adolescents psychological adjustment and depression while physical punishment was linked to behavior problems for kas parental cultural adaptation to the us moderated the relationship between parenting and child mental health acculturation is cultural and psychological adaptation into the mainstream culture when mothers adopted fewer us cultural practices maternal rejection was negatively related to childrens social competence in comparison when mothers adopted more us cultural practices it was found to be unrelated to childrens social competence similar results were also found among adolescents those adolescents whose mothers adopted more us culture had better psychological adjustment than those whose mothers adopted less in addition mothers who used strict parental control and maintained their korean culture while adapting to us culture had adolescents who were better adjusted psychologically than adolescents whose mothers maintained less korean culture while adapting to us 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 us culture functions as a protective sociocultural factor likewise maintaining korean culture while adapting to us culture also functions as a protective factor standardized parent training programs parent training is a focused shortterm intervention aimed at improving effective parenting practices and decreasing child mental health problems according to the american academy of pediatrics effective parenting practices include positive discipline to build intimacy appropriate discipline to promote desirable behaviors and reduce undesirable behaviors and the avoidance of harsh discipline a metaanalysis of 57 randomized controlled trials in the cochrane review supports the use of parent training with a hegess g standardized mean difference between 062 to 067 indicating that parent training leads to more decreases behavior problems of children than control group in another metaanalysis of 63 randomized controlled trials cohens d effect size was 042 for improving child problem behaviors and 047 for improving effective parenting practices however most standardized parent trainings have been developed for usborn parents familiar with usbased 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 recently a few culturally tailored parent training programs were developed and tested using more rigorous research methods targeting chinese americans african americans and mexican americans and impacts were found to be positive and quite promising 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 results from the lead authors pilot study showed intervention group mothers increased positive discipline in comparison to control group mothers but intervention group children did not decrease behavior problems within the intervention group mothers with less acculturation to the us decreased harsh discipline whereas mothers with high acculturation increased appropriate discipline 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 this led to the development of the korean parent training program korean parent training program as shown in table 1 the kptp uses multiple theories to bring together traditional korean cultural elements more recent cultural elements and effective parenting practices first the kptp helps ka parents understand how living in two cultures impacts both their parenting and their childs mental health then it reviews christian parenting principles such as unconditional parental love and traditional confucianism and korean parenting virtues such as rolemodeling behavior that is respectful warm patient and generous as well as having high standards on children second within the context of the parental acceptancerejection 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 childs behavior to influence future behavior the strategies are adapted from the bright futures in practice mental health a nationwide mental health promotion program for example parents roleplay a common physical punishment method among koreansraising their arms up in the air while kneeling for five minutes 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 this realization can motivate parents to find an alternative nonpunitive method such as a brief timeout the kptp manual is available in both korean and english hypothesis it is hypothesized that 1 upon completing the kptp intervention group mothers would demonstrate an increase in effective discipline strategies parental warmth and parent selfefficacy as compared to waitingcontrol group 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 childrens sunday school teachers all participants were recruited from six partnered ka churches in the pacific northwest criteria for inclusion of mothers were having a child between three to eight years of age being a first generation ka originally born in korea being willing to take the initial twelveweek kptp class followed by three monthly booster sessions as a member of the intervention group or the waitingcontrol group and being willing to complete pre post and 3month followup 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 disciplinethe korean parent discipline interview was adapted from the oregon social learning centers discipline questionnaire to assess discipline strategies that the kptp attempted to increase or decrease among participants the kpdi is a 65item 7point likerttype scale instrument with four subscales that measure harsh discipline positive discipline and appropriate discipline this instrument is available in english and korean higher mean scores indicates higher tendency of using each discipline technique websterstratton and colleagues established predictive validity of the instrument by finding the instrument to be sensitive to the intervention cronbachs alpha for the current ka sample was 68 for harsh discipline 072 for positive discipline and 060 for appropriate discipline is an instrument that has 81 yesno items with four subscales that measure four parenting styles in emotion coaching including dismissing disapproving laissezfaire and emotion coaching the scale was translated forward and backward using brislins method one positive emotion coaching style score was computed by calculating score of emotion coaching score minus mean score of dismissing disapproving and laissezfaire cronbachs alpha for the current ka sample was 074 for dismissing 078 for disapproving 055 for laissezfaire and 060 for emotion coaching emotion coachingthe emotion coaching parenting style parental warmthrejectionthe parental acceptancerejection questionnaire is a 24item 4point likerttype scale instrument that includes eight questions measuring warmth and sixteen measuring rejection 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 reported evidence for convergent discriminant and construct validity this instrument is available in english and korean cronbachs alpha was 081 for warmth 058 for rejection and 085 for total scale parenting selfefficacythe parenting selfefficacy scale is a 37 item 5point likerttype scale instrument that assesses selfefficacy 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 selfefficacy it was developed in korean and was translated into english using the forward and backward method choe and chung reported construct validity and cronbachs alpha of 095 for korean mothers in korea cronbachs alpha for current sample was 096 child emotional and behavioral problemsthe pediatric symptoms checklist is a 35item 3point likerttype 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 and murphy reported evidence for convergent and construct validity the scale was translated forward and backward using brislins method the cronbachs alpha for the korean version in the current study was 073 intergenerational acculturation conflictsthe child intergenerational acculturation conflict scale was adapted from the asian american family conflict scale it is a 10item a 5point likerttype scale instrument that measures the frequency of asian american parentchild acculturation conflicts over values and practices scores range from 10 to 50 with higher scores indicating a higher frequency of parentadolescent conflict the validity was demonstrated by statistically significant correlations between the aafcs scores and the social attitudinal familial and environmental acculturation stress scale scores cronbachs alpha for the current study sample was 089 observational datavideotapes were analyzed using dyadic parentchild interaction coding system positive interactions included a parent validating a childs emotion helping with problem solving reflecting the childs statements making descriptive comments of the childs behaviors following the childs lead or giving the child options researchers also tracked the number of times a parent praised a child for a specific action within a 15minute period the coder was not blinded to the group assignment or assessment interval intervention group mothers satisfaction with the programthe parent satisfaction questionnaire was developed specifically for this program this 65item 5point likerttype 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 usefulnessapplicability of the parenting techniques taught in the program cronbachs alphas ranged from 072 to 088 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 preintervention assessments for all participants churches were assigned to intervention group and waitingcontrol group 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 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 preintervention postintervention and 3month follow up 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 and three did not complete the survey among the 27 mothers in the wcg four withdrew the data therefore represent responses from 48 total mothers for the t1 and t2 comparison at t3 two mothers in ig and two in wcg dropped out thus for the t1 and t3 comparison the data represent responses from 44 total mothers using anova no significant differences on the demographic variables were found between mothers who dropped out and those who remained in the study each mother received a 10 gift certificate upon completion of each t1 t2 and t3 assessment sunday school teachers completed selfreport surveys on child emotional and behavioral problems observed in church teachers were blinded to weather parents of children were in the experimental or waitingcontrol group and to the assessment interval teachers received a 5 gift certificate upon completion of each t1 t2 and t3 assessment children 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 nonliterate children 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 deliverytwo bilingual and bicultural interventionists delivered the kptp separately in small group sessions the kptp was delivered over a twelveweek period using weekly 3hour classes followed by single booster sessions held monthly for a total of three months intervention integrity and dosageto assure integrity and consistency of each class the lead author trained the interventionist by reviewing the powerpoint of the program protocol including parenting principles roleplays 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 971 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 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 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 2sided with a significance level of 005 and confidence intervals were at the 95 level in this study there are twelve outcome variables that were measured at two outcome time points 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 us residency for t1 and t2 overall ig mothers lived in the us significantly longer than wcg mothers which can be attributed to the inclusion of the englishspeaking group in the ig this group consisted primarily of women who had come to the us at a young age however when data were analyzed with and without controlling the length of stay in the us the results were basically the same the data presented in table 3 did not control for the length of stay in the us there were no significant differences on the demographic variables between children or sunday school teachers in the ig or the wcg preintervention 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 preand postbetween 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 selfefficacy and decreased parental rejection and harsh discipline observational data 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 ig children selfreported fewer intergenerational acculturation conflicts with their mothers as compared with wcg children therefore both hypothesis 1 and 2 were fully supported using selfreport 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 teachers report of child emotional and behavioral problems childs 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 mothers general satisfaction with kptp was 41 out of 5 indicating that mothers approved of the program additionally mothers said the programs delivery methods and the parenting skills covered were helpful the parenting strategies most appreciated by mothers included helping children with emotion regulation learning what the bible states about parenting use of sticker charts or specific praise to promote good behavior and how to express love to ones child overall participants thought the strategies featured in the kptp were easy to practice with the easiest being expressing affection to ones child followed by using sticker charts and giving specific praise the hardest parenting strategies to use included anger management relaxation meditation and emotion coaching the most commonly cited reasons for attending the class were to learn effective discipline strategies to learn emotion coaching to better understand parental roles reflected in the bible to learn about parental stress and emotion regulation and to practice ways to decrease intergenerational acculturation conflict 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 effectiveappropriate 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 the findings of this study are particularly noteworthy given the results of the lead authors previous research testing the incredible years program with ka parents in that study all participants increased only their use of positive parenting strategies 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 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 parentchild 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 timesvideotaped session at t1 this number jumped to 911 timesvideotaped 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 childrens emotional and behavioral problems and social competence as well as depressive symptoms among ka adolescents 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 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 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 childrens good and bad behaviors and outcomes ka parents also perceived this strict parental control as a way of expressing their love for their children 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 hisher parents the kptp also helped parents to understand that this practice might hinder the development of a childs autonomy once learned the parenting strategies in the kptp helped participating mothers feel more competent as evidenced by their significantly higher parenting selfefficacy 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 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 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 us 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 however this pilotstudy needs to be expanded using a larger sample in this study childrens 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 childrens emotional and behavioral problems and the prevention of conduct problems in adolescence 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 the kptp teaches parents how living in two cultures impacts the parentchild relationship and childrens mental health based on the acculturative family distancing theory 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 cronbachs alpha reliabilities for harsh discipline appropriate discipline liaisefaire 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 acceptancerejection theory and the acculturative family distancing theory as theoretical frameworks not only have parental acceptancerejection 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 childrens 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 waitingcontrol group for example small churches can be grouped to allow for 2030 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 childparent intergenerational conflict and improve the mental health of ka children 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 parents apply consequences following a childs behavior in order to increase or decrease the likelihood of that behavior recurring ♦ bright futures in practice mental health a national health promotion and disease prevention initiative that addresses childrens health needs in the context of family and community promotes use of positive discipline and appropriate discipline

problemskorean american ka children experience mental health problems due to difficulties in parenting dysfunction complicated by living in two culturesparent training program kptp was pilot tested with 48 ka mothers of children ages 38 using partial group randomized controlled experimental study design selfreport survey and observation data were gathered findingsanalyses using generalized estimating equation indicated the intervention group mothers increased effective parenting and their children decreased behavior problems and reported less acculturation conflict with mothersthe kptp is a promising way to promote effective parenting and increase positive child mental health in ka familieskorean 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 us kim hong 2007 living in two conflicting cultures can also create conflict between parents who practice korean style parenting and children who quickly adopt us 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

introduction the interest in the exchange and consumption of news is one of the oldest human habits what has changed over time is the medium to disseminate news from wordofmouth 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 peoples 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 datadriven studies of online news consumption these studies characterize various aspects for example the virality of news news coverage in social media compared to traditional media or user preferences compared to editors suggestions 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 the first is published content for example projects like gdlet and eventregistry 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 the second source is what is publicly shared in popular social networks although this approach nicely captures how users relay and react to news it misses what happens outside the social network the third source is collecting usage data statistics from an individual online newspaper a comprehensive view but limited to one news outlet 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 surveybased reports 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 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 and the forth is located in a large university campus during this period we observe 80 million visits to 54 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 we quantify the popularity of news categories in terms of number of visits and put it in perspective with their popularity considering various sources news discovered on facebook news visits to major news outlets published articles and finally user preferences expressed in surveys to estimate the view that social media and major news outlets have we analyze the referral of the news visits ie 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 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 and across time of day and months 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 as such studying only news shared on social media captures a small fraction of news visitsas already pointed by flaxman goel and rao 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 overrepresented on facebook while sport is underrepresented 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 politics is surprisingly less popular with 35 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 • 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 incentivesensitization theory of addiction in neuroscience postulates that what we observe is a legitimate difference between what people want and what they like our discussions with two experts indicates that the second cause is more likely • newscategory popularity is overall stable across locations despite demographic differences between the populations we study albeit overall stable the popularity of certain categories slightly varies depending on time of day or certain events of the year 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 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 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 also compare the topical coverage of the new york times twitter and facebook and highlight other differences kwak et al compare the gap between media attentionmeasured as popular topics at a news aggregator and public attention measured with google trends on international news coverage across hundreds of countries finally boczkowski 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 categories considering all news visits of a population those considering only visits to major news outlets and finally 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 research institutes like reuters or pew research regularly issue surveybased reports tracking various aspects of user behavior here we contrast popularity inferred from usage data with selfreported preferences in surveys similarly to our work lee and chyi 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 has confirmed anecdotal evidence suggesting the inability of surveys to accurately measure news media exposure in particular by directly comparing nielsons audience measurement estimates to surveybased 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 and not only exposure we reveal indeed a major difference between selfreported 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 show that 85 of the topics in twitter are related to news headlines osborne and dredze 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 saeztrumper castillo and lalmas identify different kinds of biases in news shared on twitter wang and mark study the news consumption from social media in china they characterize different types of audience for different types of news kourogi et al 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 show that users sharing news on twitter present no bias based on their perceived ideology of the news outlets ie they see no bias due to selective exposure in their datasets flaxman goel and rao 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 and in a large residential isp in two different italian cities 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 and two different districts in another city 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 tstat processes network packets and extracts raw http requests more precisely for each http request it extracts the requested url the referral an anonymized ip address the timestamp of the visit and the user agent 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 publishedarticles 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 to extract user visits all http requests identifying news articles from the set of visited urls we keep only those urls that correspond to wellknown 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 focus mainly on englishspeaking news outlets and hence are unfit to identify news articles in our italianbased 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 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 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 we manually merge similar categories similarly we group subcategories 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 tragediesweird news and 165 of international politics an additional 11 are a mixture between politics and tragedies • ed columns many articles are grouped by editors under various names like columns opinions or editions for the ease of the presentation we group all these articles under the label ed columns similarly labeling a 200article sample we find that such columns cover a large number of topics with tragediesweird having 25 of articles and politics 17 • tragediesweird 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 crimerelated 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 tragediesweird 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 publishedarticles dataset and their associated categories to allow further verification of our methods identifying users households and surfers one challenge for our analysis is that the traces have no peruser 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 gateways ip address eg members of a household connected to the internet through the same adslftth 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 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 peruser behavior table 1 shows the numbers of observed households and surfers in the traces2 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 tstat processes packets in real time and obfuscates any personally identifiable information 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 eg removing query parameters after the character web cookies and locations are not logged note that tstat has no visibility on encrypted traffic where the sensitive information concentrates 3 our analysis ignores the traffic generated by users who activate the donottrack flag in their clients 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 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 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 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 eg 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 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 ie 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 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 1015 which is the share of direct browsing 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 direct browsing and facebook at around 10 with the exception of ispcity2a which we explain later twitters share is much smaller google news accounts for around 1 despite 22 of surveyed people in italy claim to use it to read news 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 ispcity2band ispcity1 but only 4 to 5 in ispcity2a we conjecture that this is due to the fact that ispcity2a 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 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 this result also confirms the study of flaxman goel and rao 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 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 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 01 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 ispcity1 together with the referral shares of the same newspapers in ispcity2b the top newspapers are similar but present differences in their ranking due to regional preferences for instance outletcity11 and outletcity2 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 newscategory 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 tragediesweird sport and ed columns politics is surprisingly unpopular with less than 35 of the overall visits we will show later that despite notable variations these results represent a behavior that is stable across time and space table 4 simulation of top 11 most popular categories 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 repubblicait 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 note that with the exception of local and weird news for which we do not have a perfect direct match in our editorbased categories remaining categories have a suitable match in our dataset finally we apply the same principle on the publishedarticles 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 underrepresented on facebook with only 4 of visits originating from facebook whereas it represents 16 of visits in usage data tragediesweird on the other hand is over represented with 23 of popularity in facebook against 16 other categories like health 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 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 repubblicait 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 surveybased 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 selfpreferences and actual usage data in sec 52 finally to put these numbers further in perspective we study the popularity of news categories in terms of number of published articles 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 65 of published articles international has also 7 of visits despite only accumulating 35 of published articles not shown in the table only 19 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 than the actual fraction of visits it attracts takeaway first usage data shows that tragediesweird 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 selfreported 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 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 and compute each time the fraction of interested surfers 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 but by the volume of surfers 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 2408 of households are interested in politics these drop to 855 and 137 respectively when considering higher thresholds overall unlike the survey report tragediesweird 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 tragediesweird news takeaway unlike their preferences in surveys users seem to consume news articles from more catchy categories such as tragediesweird 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 users actually prefer certain categories but cannot resist the urge of clicking on other appealing categories 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 second editors try to publish what they estimate attractive for users we will further discuss these possibilities in sec8 the percentages of category popularity in our data are representative of the populations we study subsampling 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 shows the percentages of visits per news category at various hours of the day fig 3 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 ie from 900am till 1100pm the percentages of each category seem to be overall stable there are however few curious variations tragediesweird 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 tragediesweird 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 800am and 900am 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 finally notice the low number of users between 100am and 800am 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 tragediesweird and a rise of entertainment over months fig 3 shows the percentage of visits to each news category at each month of 2015 in one of the locations fig 3 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 countrywide 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 when further investigating we found that these days preceded an italian referendum in 2016 to which almost 16 million voters nationwide 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 top10 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 ispcity2a and campuscity2 both have a slightly higher percentage of tragediesweird 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 tragediesweird is often slightly more popular regardless of the location as we saw previously campuscity2 users read more sport and less people compared to the rest notice that in campuscity2s 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 campuscity2 than in other datasets finally ispcity1 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 selfreported 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 ie 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 ie 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 and what they actually prefer this possible explanation is inspired by the incentivesensitization theory of addiction in neuroscience individuals are driven by various rewards according to this theory a reward has two components like the pleasure one obtains from it and want ie 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 reward9 assuming that users expressed preference coincides with their perceived pleasure ie 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 for instance sensational news but ended up being forced to click on them in a cuetriggered 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 selfknowledge or selfimage might enter also into play to guide people defining what is valuable for instance the need to maximize feelings of selfesteem 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 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 ie 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 which demonstrates that selfreports immensely overestimate news exposure we additionally contacted prof kent c berridge one of the two biopsychologistsneuroscientists who formulated the incentivesensitization 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 peoples cognitive judgments about value whereas their actions reflect their motivationaldriven 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 tragediesweird 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 conclusion in this paper we analyzed 80 million news visits to 54 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 newscategory consumption at large interestingly our results further demonstrate that the analysis of usage data complements surveybased data with new insights indeed by putting surveybased 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 cuetriggered attraction

most of our knowledge about online news consumption comes from surveybased 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 54 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 selfreported newscategory 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 selfreported 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 cuetriggered attraction work performed when the authors were at nokia bell labs

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 resides in the south 1 and in states such as mississippi where a large percentage of counties are classified as rural 1 the percentage of obese residents is among the highest in the region 2 further the state of mississippi has greater black population density compared with other deep south states including alabama louisiana and georgia 3 as well as a stark difference between the proportion of black and white 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 communityand churchbased 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 churchbased intervention research 67 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 89 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 telehealthmedicine 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 twophase 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 churchbased weight management intervention among young to middleaged 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 to enroll in a churchbased 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 1h groupbased sessions that entailed a 20min education component 20min motivational interviewing component and 15to 20min snack and social component eligible focus group participants were those determined at intervention enrollment to be overweightobese based on bmi and selfidentified 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 nonparticipants 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 nonparticipants 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 notetaker 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 openended questions related to barriers and facilitators to participation in a weight management intervention and suggestions for program improvement whereas the nonparticipant 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 clarkes sixstep 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 1920 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 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 wasnt 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 preexisting health conditions and overall health status preexisting conditions were chronic diseases including high blood pressure and diabetes overall health status included both mental and physical health one participant explained right now whats 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 dont recognize her because ive always been smaller my entire life its just the last 5 or 10 years that ive slowly continued to gain weight nonparticipants expressed that if they were able to participate in a program they would hope to gain program support as accountability to achieve health goals nonparticipants 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 churchbased 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 nonparticipants 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 2223 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 youll be around for your kids i have high blood pressure but im on two different blood pressure medications and that was a wakeup call for me im gonna get fit im gonna eat right or im 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 its going to do for me the health and the finding myself again and all those different things so i dont think about the positive its all negative perceptions of nutrition and physical activity program positive and approachable its 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 445 of surveyed users discontinued using a healthrelated 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 intensitycontact and providing individualized participant support without increasing participant burden a review indicated that technologybased weight loss interventions induced positive weightrelated outcomes enhanced social support and selfmonitoring opportunities and improvement in program adherence 26 our previous research as well as conclusions from another study 27 examining healthrelated 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 livestreamed 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 67 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 have been associated with improved diet and physical activity behaviors among minority and rural communities 89 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 groupbased 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 nonparticipants 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 multistep 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 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 under award number r15md010213 and mississippi inbre funded by an institutional development award 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 competing interests authors report no competing interests

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 americansthe 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 curveburden and competing priorities facilitators included support limited cost convenience and health participants perceived the term weight management program as overwhelming and defeatingthe 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

introduction the relationship between low socioeconomic status 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 or advantages are not fully understood 23 one problem is that ones adult health status may reflect sesrelated risk or protective factors which are cumulative in terms of their effects 4 5 6 thus pointintime indicators of adult ses such as income and educational attainment may not adequately reflect the influences shaped by ones ses during childhood which either persisted or changed during the life course 78 other influences associated with ses may be difficult to quantify including homeownership indebtedness family wealth and dynamics operating at the community level such as ones network of social relationships 3 9 10 11 for the abovementioned reasons conventional indicators of ses 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 ones perceived status may provide a better conceptual measurement framework for exploring the associations between adult ses and health outcomes 91015 this may be in part because subjective measures are arguably global in nature and account for ones understanding of the stability of their social status as well as for the prospects of social mobility while pointintime measures for example do not 1015 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 womans perceived or subjective social status 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 healthnamely a womans 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 healthrelated 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 communitybased study examining maternal stress birth outcomes and maternal and infant health and healthrelated 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 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 2021 women were recruited and interviewed at the time of prenatal care enrollment and scheduled for three followup 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 followup more than 98 agreed to participate in the followup phase of the study and attempts to complete both the 3 month and 11 month postpartum surveys were successful for 67 of those who did agree data from the prenatal interviews indicated that women who did not complete the first two postpartum interviews did not differ from those who did with respect to income education marital status or parity 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 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 were ordinal and nonlinear 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 ones 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 selfrank on this ladder ranging from 110 was used as the basis for our measure of subjective social status 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 59 and standard deviation of 185 the abovementioned cutoffs for low and high groups represent scores that were approximately 15 standard deviations below the mean and 15 standard deviations above the mean of 59 respectively all others between 15 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 were categorized as being the low income group those in the second or third quartiles were categorized as the medium income group and those in the highest quartile 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 raceethnicity and parity women were grouped into three categories in terms of their education attainment low medium and high other variables representing measures of objective social standing that were included in the analyses were public assistance status homelessness and ever having an involuntary utility shutoff 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 and overall physical and emotional health in the postpartum period all self reported measures of physical and emotional health were dichotomized with respondents classified as being in relatively good as opposed to relatively poor health other measures of emotional health during the postpartum period used in the analyses included depressive symptomatology and perceived stress depressive symptomatology was defined as a score of greater than or equal to 23 on the center for epidemiological studies depression scale the cesd is a pretested 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 2324 perceived stress was based on the administration of the cohen perceived stress scale 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 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 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 kruskals 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 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 100 27 results the sociodemographic and health characteristics of the study population are shown in table 1 africanamericans comprised 706 whites 98 and hispanics 165 of the 1322 women for whom the three surveys were available the age range for this cohort was 1343 years with a mean age of 239 years almost 40 of the women did not graduate from high school while 177 received at least some post high school education almost 65 of the women reported a total income of less than 1200 per month more than 90 of the women reported receiving public assistance more than 5 indicated that they had experienced a utility shutoff and over 2 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 well below that for the us as a whole specifically more than 7 out of ten placed themselves close to the middle 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 and their emotional health in the postpartum period to be relatively poor consistent with these overall selfreported items women in the lowest compared to highest sss group were more likely to have indicated one or more major health problems far more likely to be in the high stress category and to have depressive symptomatology 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 and selfrated poor physical health 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 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 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 but the effect size is considerably smaller than that for sss the relationship between sss and selfrated physical health was also persistent even after accounting for objective ses measures 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 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 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 195 times more likely than women in the high sss category to have depressive symptomatology as well as two times more likely to report being in relatively poor physical health in pregnancy discussion the analyses of the relationship between our measure of subjective social status 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 middleaged 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 statussuch as savingswealth the quality of education received and access to social and communitylevel resourcesmay be overlooked sesrelated 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 23 a great deal of empirical health research in the us for example is designed to assess racialethnic 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 23132 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 lowincome urban neighborhoods and yielded a study cohort with a medium income of less than 10000 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 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 socioeconomic 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 selfassessment of ones 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 income and education gamma table 3 logistic regression results relationships between sss income education selected measures of impoverishment and high stress levels a

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 communitybased 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

background highrisk injection practices such as receptive injection equipment sharing play a central role in the transmission of infectious diseases among people who inject drugs 1 2 3 4 in the united states there are an estimated 750000 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 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 302 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 individualand structurallevel factors substance use social context and policy 791316 inadequate access to sterile injection equipment has also been associated with syringe sharing 20 21 22 mitigating the consequences of highrisk injection practices may be achieved through the implementation of interventions that aim to increase access to sterile injection equipment including syringe services programs 23 24 25 26 however many communities lack ssps due to restrictive policies communitylevel 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 evidencebased response strategies such as medications for opioid use disorder the covid19 pandemic had farreaching effects on public health including among pwid in some instances ssps closed or modified their operations to reduce covid19 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 worsened among people who use drugs during the pandemic 374243 in terms of substance use disorder treatment a 2022 study found that there were substantial reductions in inperson services but policy changes that provided flexibilities in treatment delivery were wellreceived among people with histories of substance use 44 other covid19 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 4546 although existing research demonstrates several ways in which the covid19 pandemic affected pwid limited research has been conducted to understand its impact on highrisk 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 covid19 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 and the district of columbia most participating drug treatment programs and harm reduction providers were engaged in the bloomberg opioid initiative 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 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 prepaid 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 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 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 gender relationship status sexual orientation education level and employment status participants reported their race and ethnicity which we dichotomized to nonhispanic white and racialethnic minority due to sample size constraints participants further reported if they were currently homeless if they experienced hunger at least once a week since the covid19 pandemic if they had ever tested positive for hiv and if they traded sex for drugs or money since the pandemic started based on the county participants reported living in we created an urbanicity measure using the national center for health statistics rural classification scheme we created a threecategory measure of urbanicity large metropolitan small metropolitan and nonmetropolitan 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 methamphetamine methamphetamine and heroin simultaneously prescription opioids tranquilizers and buprenorphine we also created a variable that reflected the total number of drugscombinations of drugs injected in the past month covidrelated drug use behavior changes we included four measures of drug userelated behavior changes during covid19 first we asked participants to indicate how often they injected drugs per day during covid19 relative to the precovid era participants indicated how often they used drugs with others during covid19 relative to before the pandemic participants further indicated if they used mostly in private locations during covid19 and if they had avoided accessing syringe services programs due to covid19 fears 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 and any nonmoud 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 analysis we first estimated the prevalence of past month receptive injection equipment sharing in our sample we used chi square and ttests 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 02 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 from the multivariable model due to collinearity with other included variables 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 results the average age of the sample was 39 years old half the participants were women and 629 identified as nonhispanic white fourteen percent identified as a sexual minority few reported having hiv over half of participants were in a relationship having a high school education was the most common education level the prevalence of having less than a high school education or some college or more were similar most participants were not working about onequarter of participants were homeless and onethird reported weekly hunger urbanicity level varied approximately eleven percent reported engaging in transactional sex on average participants reported injecting three drugs in the past month most had accessed an ssp in the past month onethird of participants reported more frequent drug injection during covid19 just under half 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 participants who reported receptive injection equipment sharing were significantly younger than persons who did not participants who identified as sexual minorities as nonhispanic white experienced hunger at least weekly and who engaged in transactional sex 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 use of speedball methamphetamine and methamphetamine and heroin 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 individuals who reported increased injection frequency during covid19 were significantly more likely to report receptive injection equipment sharing than persons who reported the same or less frequent injection in the multivariable model 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 experiencing weekly hunger and number of drugs injected were also associated with greater odds of receptive injection equipment sharing older age and living in a nonmetropolitan area 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 covid19 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 covid19 794748 eliminating infectious disease transmission among pwid will require novel lowthreshold interventions that ensure pwid have access to sterile injection equipment during times of cooccurring 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 covid19 pandemic for example food insecurity has been associated with pwid engaging in highrisk behaviors for hivsti acquisition in prior research 9 47 48 49 for pwid with insufficient food access obtaining food may compete with persons engagement in healthpromoting behaviors such as always using sterile injection equipment it is also plausible that hunger is a proxy for a mosaic of structural vulnerabilities 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 5051 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 highrisk 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 covid19 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 ie persons who inject more types of drugs may require larger volumes of sterile injection equipment including syringes given that the covid19 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 peerbased ssps may also be particularly effective at reaching vulnerable pwid 5657 we found that living in a nonmetropolitan area was marginally associated with decreased odds of recent injection equipment sharing this finding warrants additional study given that many injection drug useassociated hiv outbreaks in rural communities have occurred in recent years 17 18 19 58 further analyses that examined risks for injection drug useassociated hiv outbreaks identified many rural counties throughout the united states as vulnerable 59 though methodological differences limit comparability across studies receptive injection equipment sharing has been shown to be a relatively common phenomenon among rural pwid 313156061 our finding that nonmetropolitan 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 highrisk 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 urbanrural 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 highrisk injection practices efforts should also be undertaken to ensure pwid receive evidencebased 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 covid19 pandemic and that these behaviors varied according to education level hunger urbanicity and number of drugs injected we also found that pwid residing in nonmetropolitan 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 covid19 pandemic affected risks for infectious disease acquisition among pwid throughout the world and our results shed light on the highrisk injection practices among pwid that contributed to enduring infectious disease risks during the pandemic 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 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 biomedcentralcomsubmissions ready to submit your research ready to submit your research choose bmc and benefit from choose bmc and benefit from

background receptive injection equipment sharing ie injecting with syringes cookers rinse water previously used by another person plays a central role in the transmission of infectious diseases eg hiv viral hepatitis among people who inject drugs better understanding these behaviors in the context of covid19 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 covid19from 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 covid19 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 sharingone 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 214 95 confidence interval 95 ci 124 369 experiencing hunger at least weekly aor 189 95 ci 101 356 and number of drugs injected aor 115 95 ci 102 130 older age aor 097 95 ci 094 100 and living in a nonmetropolitan area aor 043 95 ci 018 102 were marginally associated with decreased odds of receptive injection equipment sharingreceptive injection equipment sharing was relatively common among our sample during the early months of the covid19 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 highrisk injection practices among people who inject drugs requires investments in lowthreshold and evidencebased services that ensure persons have access to sterile injection equipment

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 153 million 2 in the late 1980s fulani were estimated to manage 90 of nigerias 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 nonfulani accounted for 17 of cattle only 03 cattle were reared on commercial holdings in a periurban 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 194 million cattle 406 million sheep and 710 million goats 5 traditionally fulani practiced yearround 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 subhumid 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 subhumid zone for yearround 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 yearround 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 croplivestock farming and a more settled lifestyle 8 most fulani now have permanent homesteads and practice only shortrange 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 and access to markets and to reduce clashes between pastoralists and crop farmers driven by competition for resources the kachia grazing reserve 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 10000 fulani pastoralists and their 40000 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 twofold 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 offfarm 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 makeup 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 31000 hectares between latitudes 10˚0310˚13n and longitudes 7˚558˚06e kgr lies within the subhumid zone 700900 m above sea level and is fed by the kaduna river kgr exhibits northern guinea savannah woodland vegetation the climate is tropical subhumid with a wet season running from juneoctober and dry season between novembermay the average temperature is 28˚c 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 administratively kgr is divided into 6 blocks block 2 is large and diverse geographically and is subcategorised into 2a and 2b 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 june and october this approach enabled themes to be covered not only through administration of questionnaires at different time points and to different cohorts of householdsindividuals 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 moved into the reserve with their livestock a census undertaken in june 2011 provided a revised figure of 777 households with a human cattle sheep and goat population of approximately 10000 40000 10000 and 5000 respectively 11 of the 752 households for which data on the year of settlement in kgr are available 282 were established in the kgr before the period of intercommunal violence that began in the early 2000s a further 387 settled in kgr between 2001 and 2010 and 331 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 612 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 individualsgroups targeted are summarised in table 1 wealth and poverty were assessed using participatory wealth ranking in which focus group discussants selfdetermined 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 1500 questionnaires focussed on four themes household size and composition the domestic animal population 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 households wealth status in the kgr as previously reported 1415 to aggregate the livestock species maintained by a household the total number of tropical livestock units were calculated the following conversion factors were applied cattle 070 sheep and goats 010 domestic fowlpoultry 001 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 fiftysix 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 predating 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 were carried out in r v311 17 a multivariable general linear regression model to explore the key variables affecting the total livestock units within a household was created in r using a stepwise forwardselection approach with akaike information criterion values multiple correspondence analysis 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 salary and some sort of business initiativeeg tea shop motorcycle servicing etc wealth status 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 v13 ethics statement ethical clearance for interviewing of human subjects was granted on 7th february 2011 by the ministry of health kaduna state 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 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 though linear regression indicated that this relationship accounted for only 8 of the variation in household size rates of formal education 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 fathers household the majority of hhhs 70 had either one or two wives two was the modal number when all of a hhhs marriages were considered with 32 in the march survey and 44 in the juneoctober surveys having married twice three hhhs had married five times and one hhh interviewed had married 10 times but was exceptional 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 threegeneration 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 brothers 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 5 hhh had 5 wives 4 present and 1 that died doi101371journalpone0172866t002 respondents reported four phases of household expansion and division 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 the household expands when the sons of the hhh take their own wives and have children division occurs as sons and their wives separate from their fathers 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 fathers 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 household dissolution occurs when the hhh dies and his herd is distributed amongst his sons and daughters in a 21 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 juneoctober 2011 16 was considered the age of adulthood accordingly 53 of the population were children overall 51 of the household population was male within the 515year 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 nonblood related cattle boys classified as members of the households accounting for 14 of the population fgds indicated these could be from nonfulani ethnic groups the mean household size was found to be higher in juneoctober 2011 than in march 2011 new immigrant households were significantly larger with a mean 3 livelihood strategies kgr is considered by government officials to be an agropastoralist community with the implication that 2550 of income is derived from livestock and livestockrelated 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 ninety percent of kgr households grow crops and 96 of the cropgrowers ranked this activity second in terms of contribution to overall household income over half of kgr households engaged in offfarm activities and ranked this activity third in terms of its contribution to the household economy remittances from family members living away from home and womens crafts also contributed to the income economy of some households although these sources were typically ranked 3 or lower 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 daytoday cash needs whilst the sale of cattle is limited to major cash needs there was no significant difference in household engagement in nonlivestock related activities between new immigrant and old settler households livestock keeping livestock species kept in kgr include cattle sheep goats and domestic 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 subherds 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 these subherds 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 owninghiring 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 postelection violence these secondary homesteads were mostly within kaduna state some interviewees reported owning property in bauchi plateau and nassawara states household size was larger for new immigrants who had correspondingly larger average tlu in june 2011 new immigrants and old settlers had 32 and 20 tlu per capita respectively by october 2011 both groups had just over 25 tlu per capita 1 cattle kept within and outside kgr 2 5 hhs kept sheep out of kgr of which one had no sheep in kgr 3 1 hh kept goats out of 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 and even then we would rather sacrifice a sheep the economic and sociocultural value of cattle in pastoral communities ranges from prestigemaking 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 nonfulani villages and towns outside of kgr to sell milk and milk products kgr inhabitants are cattlekeeping 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 and occasionally wara 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 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 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 andor 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 4055 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 there was a moderate positive correlation between the number of hectares farmed and household size and between the number of hectares farmed and tlu per household 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 tlucapita and hectares farmed offfarm income sources over half of kgr households have diversified their livelihoods through offfarm activities most citing business activities as a source of additional income business activities included owning shops in tampol the trading centre of kgr respondents also reported engagement in cattle trading or operating motorcycle taxi services one respondent was a registered contractor of an agroservices company one respondent had a house building and another a carpentry business salaried employment was also reported employment included teacher bus driver paramedic health worker computer technician policemanother civil service roles fewer households cited engagement in casual waged labour but where this was reported it consisted of building and agriculturerelated 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 gendered wealth holdings women can inherit cattle from their father upon the death of a household head his cattle are distributed in a 21 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 28year 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 fura de nono nebam wara nyamri and kindirmo 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 womens crafts table 4 also shows that across 23 of households women engaged in a range of activities including metalwork mats soap food products sewing and dressmaking a female fgd participant elaborated this enables us 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 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 forwardselection 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 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 20 while for each additional marriage tlu increased by 157 block membership a variable linked to geographical location showed marginal significance but did not demonstrate a better fit a scatterplot of tlu values per household across the blocks 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 offfarm 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 an approach to the estimation of wealth status that has also been widely adopted by other authors for categorising pastoralist and agropastoralists households 2021 there was a strong relationship between per capita and overall household tlu with a linear relationship explaining around 40 of the variance introducing a quadratic term 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 and 50 of the variation in this value could not be explained in terms of overall household tlu a significant proportion of households in kgr change tlubased wealth category when cattle outside of kgr are taken into consideration 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 4way 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 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 offfarm income sources while wealth status is shown on fig 4 this is a possible consequence of the fact that it was entered as a supplementary variableie 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 as well as these two extreme categories for herd size 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 and moderately sized herds 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 topleft quadrant consisting of households which are the largest in size have the most cattle and also have many wives conversely in the topright quadrant we find households associated with very small household size with only one wife and smaller herds finally households with smaller overall household size but with fairly large herds and two wives are clustered towards the bottom of the graph 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 5001000 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 2324 members of the households acknowledged that the head is responsible for management of the herding and agricultural output for the cattle herds 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 2526 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 seminomadic 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 as the extended household made up of multiple ruga consisting of a collection of huts belonging to members of the same family this is the unit representing a cattleowning 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 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 outdated 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 onethird of his stock is much betteroff 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 socalled 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 235363738 a decrease in household livestock holdings or increase in demand for household inputs is considered to favour a transition from pastoralism to agropastoralism 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 had the most diversified sources of income whereas those with more than 45 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 agropastoralist 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 cowhuman 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 taking total tlucapita 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 offfarm 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 offfarm sources of income varied households at both ends of the wealth scale were more likely to engage in offfarm 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 openminded 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 13414243 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 tsetsefree 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 water access 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 1500 cattle 80 sheep 2000 chickens and comprised 277 people 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 kgrbased herds on transhumance at least once a year taking cattle north during the wet season and south during the dry season travelling between 4080 km and 20 of households seek pasture within 2030 km of the reserve some 40 of kgr households also maintained permanent subherds outside of the reserve 1134 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 cohabit with other communities but for the fulani man to develop the technological knowhow and skills to grow crops for his family and forage for his animals the lawolbote 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 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 the nlpd 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 womans 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 and these have been explored to some extent in the kgr the future of the kgrs 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 handle184215912 supporting information s1

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 indepth household interviews concerning livelihood practices animal health ownership and productivity in may 2011 249 fulani families fleeing postelection violence entered the reserve with their livestock increasing the number of households by one thirddespite 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 offfarm activities a multiple correspondence analysis showed that for each extra member of a household its tlu value increased by 20 95 ci 1427 while for each additional marriage its tlu increased by 157 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 postimmigration it was bimodal with 26 classified as very poor and 28 as medium

background the coronavirus disease 2019 has become a public health emergency worldwide among approximately one million laboratory confirmed covid19 cases in sweden over 57000 have been hospitalised and more than 14000 covid19 related deaths have been confirmed mechanisms explaining a higher vulnerability to severe covid19 have been linked to inflammation characterized by increased levels of several proinflammatory cytokines and the inflammasome 1 in turn this has resulted in an interindividual variation in severity of covid19 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 covid19 2 3 4 also lifestylerelated factors have been linked to covid19 severity overallcentral 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 covid19 5 6 7 8 in later papers physical inactivity has been linked to severe covid19 risk 910 and in a small sample of men and women lower cardiorespiratory fitness has also been associated with a higher risk of hospitalisation for covid19 11 only a few studies have investigated the importance of lifestyle factors on severe covid19 risk and it is plausible that based on previous knowledge a healthy lifestyle before infection may reduce the risk of severe covid19 a positive impact on inflammation and the immune system is one possible mechanistic pathway 1213 as lowgrade 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 615 may induce protection against severe covid19 and regular physical activity has been suggested as a protective nonpharmacological tool against covid19 1216 however the research underpinning these assumptions is limited as are previous studies looking at the importance of and the interaction between different lifestylerelated factors for covid19 severity apart from the above predictors lower socioeconomic status has been related to more severe covid19 21718 the subsequent severity of the covid19 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 1920 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 lifestylerelated and socioeconomic factors as potential predictors of severe covid19 and with special focus on crf secondary aims are to study whether crf may attenuate obesityand hypertensionrelated risk of severe covid19 and whether lifestylerelated factors mediate the associations between socioeconomic factors and severe covid19 risk the hypotheses are that lifestylerelated and socioeconomic factors can predict severe covid19 and that variations in lifestylerelated factors mediate a large proportion of the risk of severe covid19 associated with socioeconomic factors methods the study is a nested casecontrol study based on data from the health profile assessment database 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 from a submaximal cycle ergometer test and a personcentred dialogue with a hpa coach in february 2021 a total of 407131 hpas between 1992 and 2020 were available in the database and the database was linked to national registries with data on severe covid19 using the unique swedish personal identity number a total of 857 confirmed cases with severe covid19 were identified including covid19 hospitalization intensive care and death controls were recruited from the same hpa database all deceased controls before 20191231 according to the national cause of death registry were excluded to minimize internal dropout only participants without severe covid19 and with valid data on sex age educational level crf body mass index exercise and smoking were eligible as controls eligible controls were in general more often women older and had higher crf and lower bmi the study was approved by the ethics board at the stockholm ethics review board 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 using a graded test to exhaustion is limited in the general population for numerous reasons including health risks in nonathletic populations and dependence on laboratory equipment and expertise therefore crf was assessed as estimated vo 2 max from the standardized submaximal åstrand cycle ergometer test in l•min 1 and also expressed in relative values 21 previous validation studies on adult population samples show small and nonsignificant mean differences on a group level 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 22 to minimize wellknown errors with submaximal testing participants were requested to refrain from vigorous activity the day before the test consuming a heavy meal and smokingusing 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 for 6 min to achieve a steadystate pulse assessed during the last minute of cycling using the steadystate pulse and the work rate vo 2 max was estimated from a sexspecific nomogram with corresponding agecorrection factors 21 other measurements body mass was assessed in lightweight clothing using a calibrated scale and to the nearest 05 kg body height was assessed to the nearest 05 cm using a wallmounted stadiometer body mass index was subsequently calculated central obesity was assessed as waist circumference and measured to the nearest 05 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 were measured manually by the standard auscultation method in the seated position after 20 min of resting selfreported and register data exercise commute type physical work situation diet habits alcohol habits smoking overall stress and perceived health were selfreported 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 schoolvocational education and university each occupation is labelled and defined by a fourdigit code according to the swedish standard classification of occupation 23 in the present study occupations were further aggregated according to the first digit into whitecollar highskilled whitecollar lowskilled bluecollar high skilled and bluecollar lowskilled 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 icdcoding c00d48 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 covid19 surveillance the main outcome in the present study is severe covid19 which is defined as either hospital admission admission to icu andor death due to covid19 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 sexand agematched controls as the risk of severe covid19 is strongly associated with male gender and higher age sensitivity analyses using unmatched controls are included in supplementary material for matched analyses each case was matched to four eligible controls out of the 278598 eligible controls in the hpa database with no tolerance in variation between sex or age 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 ttest cochrans q test and relatedsamples friedmans twoway analysis of variance by ranks were used and effect sizes as cohen´s d is presented for continuous data to compare descriptive characteristics between cases of severe covid19 chisquare test of independence with false discovery rate correction for multiple testing and ancova were used logistic regression modelling was used to calculate odds ratio with 95 confidence intervals for different predictors of serve covid19 three models were used and adjusted for an increasing number of variables 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 dropout for variables included in model 2 and 3 two model 1s are presented one model 1 with or and 95 ci including all available individuals and a second model 1 including only individuals with complete data for all adjusting variables 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 25299 obesity 30349 and severe obesity ≥ 35 kg•m 2 large waist circumference was defined as ≥ 88 cm for women and ≥ 102 cm for men 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 into 25 25 32 32 46 and ≥ 46 ml•min 1 •kg 1 and total income from employment into quartiles percentile 25 281143 percentile 50 362718 percentile 75 479764 swedish crowns all above analyses were performed using ibm spss and jamovi version 16 retrieved from jamovi org marginal effects plots for severe covid were calculated by setting the covariates at a mean or average level while varying the focal variables using r and the packages tidyverse 26 and ggeffects 27 mplus version 86 28 was used to estimate bayesian parallel mediation models linking socioeconomic indicators to severe covid19 via multiple mediators 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 neverseldom 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 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 models were estimated using four markov chain monte carlo chains and a minimum of 50000 iterations the first half of the iterations were discarded as burnin and the remaining iterations were used to estimate the posterior distribution of the parameters a stable potential scale reduction factor 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 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 noninformative prior specification in mplus was used results characteristics of cases and controls in the matched analyses 857 cases of severe covid19 and 3426 matched controls were included mean age was 499 years and 704 were men the median year that the hpa was performed was 2012 for controls and 2011 for cases in the unmatched analyses the mean age for all eligible controls was significantly lower compared to cases p 0001 and with a significantly lower proportion of men compared to the matched analyses the median year that the hpi was performed for all eligible controls was similar to the matched controls 2012 there were several differences between cases and matched controls for established covid19 risk factors such as cases having higher bmi blood pressure and presence of comorbidities as well as greater waist circumferences 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 selfrated health moreover cases with more severe complications from covid19 had significantly lower estvo 2 max higher bmi greater presence of comorbidities and were more often daily smokers impact of lifestylerelated characteristics four models were used to quantify independent associations between potential lifestylerelated predictors and severe covid19 in the matched analyses where two model 1s enabled comparative analyses with noncomplete 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 162 for moderate crf and an approximately twofold increased odds for low and very low fitness respectively similarly being overweight was associated with twofold increased odds compared to normal weight and obesity and severe obesity was associated with threefold increased odds a larger wc was associated with higher odds in the fully adjusted model or 175 120 to 255 presence of chronic disease had a graded increase for every additional diagnosis or 188 for one chronic disease and or 455 for 4 to 5 chronic diseases neither high systolic nor diastolic blood pressure remained significantly associated with severe covid19 after multiadjustment reporting daily smoking as well as a high level of stress were significantly associated with severe covid19 in the fully adjusted model figure 1 presents the predicted probability of severe covid19 according to continuous levels of crf overall and central obesity 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 covid19 remained significant impact of sociodemographic factors low education predicted severe covid19 after multiadjustment as did being born outside sweden vs being born in sweden no significant associations were seen for civil status occupational groups or income quartiles in additional sensitivity analyses using unmatched controls the odds for severe covid19 were higher in men and with increasing age 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 lifestylerelated factors 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 covid19 through bmi and crf and a lower risk for severe covid19 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 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 showed similar results discussion the main results of the present study include strong associations of several lifestylerelated risk factors including crf overweightobesity perceived stress and high blood pressure with severe covid19 even after adjustments for sociodemographic factors and previous diseases among patients with severe covid19 those with more severe covid19 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 collarlow skilled occupations were associated with increased risk of severe covid19 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 lifestylerelated risk factors including crf and severe covid19 the results are consistent with the few previous existing studies that have found evidence of associations between pa overweightobesity and smoking with severe covid19 910 in 387109 middleaged men and women from the uk biobank there were 760 cases of hospitalization for covid19 9 after multiadjustment participants reporting no regular pa had a 32 higher risk of hospitalization for covid19 compared to those reporting some pa or meeting activity guidelines 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 overweightobesity which showed a dosedependent increased risk of hospitalization for covid19 partly explained by creactive protein levels moreover in 48440 adult patients with a covid19 diagnosis those who had been consistently inactive in the two years preceding covid19 infection had a significantly higher odds of hospital admission admission to intensive care and death due to covid19 compared to patients reporting being inconsistently or consistently moderately to vigorously physically active 10 although the present study did not find a significant association between pa levels and severe covid19 the strong and consistent association of crf and covid19 may be even more important all previous studies have relied on selfreported pa which is a subjective measure of recent pa levels containing wellknown errors 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 covid19 per ml•min 1 •kg 1 with a doubling of risk between the two lowest and the highest categories this is similar to a previous report on allcause mortality and cvd morbidity risk where decreases of 23 and 26 per ml increase in estvo 2 max were seen 33 only one previous study has studied the association between recent crf and covid19 in a small sample of patients with positive tests for covid19 men with lower crf were more likely to be hospitalized than those with higher crf 11 a study using data from military conscript between 1968 and 2005 showed that high crf at conscript was associated with lower odds of severe covid19 later in life 34 in the fully adjusted analyses both perceived stress and smoking remained significantly associated with severe covid19 reporting high overall stress was associated with significantly higher or 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 covid19 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 compared to nonsmokers which adds to equivocal results in the current literature 49 a hypothesis has been raised that nicotine may have beneficial effects on covid19 due to its interaction with the reninangiotensin 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 56 both overweight and obesity were associated with a higher risk of severe covid19 this could partly be explained by a higher prevalence of metabolic risk factors and lowgrade inflammation in overweightobese individuals as these have been identified as central mechanisms for a higher vulnerability to severe covid19 36 interestingly a recent paper including over 17 million individuals found similar associations between commonly accepted risk factors for noncovid deaths and for covid19 deaths suggesting that covid19 largely mirrors existing risks faced by patients 37 however in the present study obesityrisk was at least partly attenuated by crf attenuation by crf were also seen for central obesity 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 3839 there are several suggested mechanisms for the beneficial effects of regular pa and higher crf levels on both covid19 severity per se as well as attenuation of the obesityand hypertensionrelated risks 12131640 one is the lower prevalence of obesity and hypertension in more active individuals 615 moreover regular exercise induces a marked increase in several antiinflammatory cytokines counteracting the lowgrade inflammatory state present in many chronic metabolic diseases 1213 it also induces a natural immuneprotection against more severe covid19 by reducing the socalled cytokine storm that icupatients with severe covid19 experience 4142 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 431051 british adults low levels of education income and area deprivation doubled the risk of hospitalization due to covid19 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 covid19 as well as mortality due to covid19 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 nonintensive care hospitalisation due to covid19 2 also bluecollar workers were significantly less likely to work from home or to change commuting habits in relation to the covid19 pandemic compared to whitecollar workers 43 however as health status prior to infection seems to heavily impact the severity of covid19 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 was related to an increased risk of severe covid19 through higher bmi and lower crf whereas lower socioeconomic status was related to a lower risk of severe covid19 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 covid19 the present indirect effects on severe covid19 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 casecontrol 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 lifestylerelated factors assessed by standardised methods another strength is the highly corresponding results obtained using either the sexand agematched 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 covid19 limitations of the study include selfreported 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 covid19 moreover the clinical status of the cases and controls between the time of their hpa and the followup 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 covid19 which is of great clinical value particularly for highrisk individuals with obesity andor 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 covid19 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 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 highrisk individuals further analyses on how sex and age moderate the association between crf and severe covid19 are needed as are studies including objective measures 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 abbreviations 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 competing interests author ga and pw 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 biomedcentralcomsubmissions ready to submit your research ready to submit your research choose bmc and benefit from choose bmc and benefit from

background the impact of cardiorespiratory fitness crf and other lifestylerelated factors on severe covid19 risk is understudied the present study aims to investigate lifestylerelated and socioeconomic factors as possible predictors of covid19 with special focus on crf and to further study whether these factors may attenuate obesityand hypertensionrelated risks as well as mediate associations between socioeconomic factors and severe covid19 risk methods out of initially 407131 participants who participated in nationwide occupational health service screening between 1992 and 2020 n 857 cases 70 men mean age 499 years of severe covid19 were identified crf was estimated using a submaximum cycle test and other lifestyle variables were selfreported analyses were performed including both unmatched n 278598 and sexand agematched n 3426 controls severe covid19 included hospitalization intensive care or death due to covid19 results patients with more severe covid19 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 covid19 with each ml in crf or 098 95 ci 0970 to 0998 and a twofold increase in odds between the lowest and highest 32 vs ≥ 46 ml•min 1 •kg 1 crf group higher bmi per unit increase or 109 106 to 112 larger waist circumference per cm or 104 102 to 106 daily smoking or 060 041 to 089 and high overall stress or 136 1001 to 184 also remained significantly associated with severe covid19 risk obesityand blood pressurerelated 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 collarlow skilled occupations and severe covid19 risk the results were consistent using either matched or unmatched controls conclusions both lifestylerelated and socioeconomic factors were associated with risk of severe covid19 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 covid19 especially in highrisk individuals

introduction the complex issues faced by people with hivaids prioritizes the provision of comprehensive nursing care 1 in indonesia the number of people living with hivaids remains relatively high with a case fatality rate of 103 as of 2018 2 and is often accompanied by comorbidities ranging from infectious diseases such as pulmonary tb accounting for 2165 and noncommunicable diseases such as hypertension 3 and kaposis sarcoma 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 hivaids which is characterized by a progressive decline in the immune system has a serious impact on wellbeing 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 hivaids are very protective in their expression 7 this difference is driven by the general stigma attached to people with hivaids in the community which is far more discriminatory than other diseases 8 and the belief that hivaids 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 hivaids during therapy programs the severity experienced by people living with hivaids does not correspond with clinical practice because nurses fail to respond adequately to their demands thus affecting their overall wellbeing 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 followup and strengthening selfcare 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 hivaids interact in the community for a wider interest in nursing practice provision of nursing care to people living with hivaids 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 hivaids the approach taken is concentrated and centered on clinical practice 14 meanwhile the health paradigm toward hivaids 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 hivaids to support their wellbeing which requires knowledge and an understanding of the patients personal experiences and the meaning of these experiences in a patients life as these are much more important than just clinical pharmacological monitoring 15 there is a relationship between wellbeing 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 wellbeing 16 people living with hivaids 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 hivaids and nursing care is critical because nurses as caregivers play an essential role in every nursing action and followup in continuing nursing services 18 therefore nurses must view people living with hivaids 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 peoplecentered holistic nursing practice 19 in addition in the process of caring the depth of the patients 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 hivaids 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 hivaids 21 they did not specify the relationship between nurses and clients from the clients perspective and only focused on physical and functional disorders therefore this study focuses on studies on the life experiences of people living with hivaids when interacting with nurses and the meaning of these experiences material and methods procedure the life experiences of people living with hivaids 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 indepth facetoface interviews with people living with hivaids were conducted in a semistructured 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 hivaids 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 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 generallyaccepted 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 hivaids to gain meaningful perceptions and experiences the researchers recruited a diverse and representative sample that reflected the population of people living with hivaids the inclusion criteria in this study were as follows people living with hivaids who were hospitalized or outpatients people living with hivaids who have had hivaids for more than two years and people living with hivaids routinely seeking treatment meanwhile the exclusion criteria were people living with hivaids 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 hivaids 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 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 hivaids sufferers the content of the guide was relevant with no amendments required and included openended questions such as 1 what has changed since you suffered from hivaids 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 hivaids 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 number085eckepks2052021 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 hivaids received limited attention regarding their psychosocial problems when interacting with nurses six subthemes were found to support the overall theme1 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 selfstigmatization 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 hivaids 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 but right now its really hard for me to do these things i feel forced to concentrate on a strict routine of treatment and selfcare programs for my disease this situation causes people living with hivaids 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 theres nothing im proud of myself right now so im so sad im so traumatized that i have to erase all my dreams forcing to accept their situation and suppressing the will participants often cited selfacceptance 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 dont 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 the situation experienced by hivaids 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 its already done unless i surrender to god maybe this is a way of life that i have to accept wanting to be recognized like other people in general the perception of pressurefree 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 it turns out that he can be like normal people in general he is very relaxed having this disease 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 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 but i didnt want the health officers to ask me what disease it was he should have known what disease i had he looked like he didnt know and didnt want to know my feelings and should i answer that question when many people ask me social stigma and selfstigmatization can affect surroundings this theme shows that people living with hivaids 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 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 this makes people living with hivaids 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 dont know what will happen to me however i know that he only thinks about me and doesnt 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 lacking enthusiasm for life expectancy having hope is the main weapon for people living with hivaids 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 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 always imagining the shadow when death picks up this theme describes the recurring thoughts of the patient about death hivaids 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 im so scared and i always think that my end has come other participants also revealed i just surrender and im ready to be picked up by death at any time 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 i dont think i can stand this suffering and at some point in the day i even think about ending my life so i dont have to endure this suffering for too long discussion overall this study emphasizes the physical impact of hivaids 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 hivaids 27 uncertainty about their health condition is an additional feature as a result of suffering from hivaids 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 hivaids 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 selfcare needs of people living with hivaids andor modify their physical psychological and social environments according to their current situation conditions and demands 32 furthermore other studies have also reported that having hivaids 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 selfesteem 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 selfconcept 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 familys 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 psychoemotional support other studies also support this finding which explores the perspective of families in supporting people living with hivaids 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 hivaids 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 hivaids 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 hivaids 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 hivaids 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 stressfree life as a key to the psychological wellbeing 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 hivaids want to be identified as people suffering from the disease in general and there is no emphasis of the hivaids accent word for their disease in their environment in this case the stigma experienced both social stigma and selfstigmatization by people living with hivaids 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 hivaids person is felt very differently and is considered psychologically stressful and these feelings can lower selfesteem 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 ones life which is in line with this study 48 this negative emotional response has been discussed in depth among people living with hivaids 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 problemsolving strategies faced by people living with hivaids that the presence of high expectations from people living with hivaids 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 hivaids 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 hivaids 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 patients 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 306312 2020 online pdf all relevant data are within the manuscript and its supporting information files supporting information s1 file 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

nurseclient interaction when providing nursing services is limited to optimizing treatment and selfcare with limited focus on the psychological problems of people living with hivaids 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 hivaids who received limited attention from nurses from the perspective of nurseclient relationshipa phenomenological qualitative design was used through indepth facetoface interviews in a semistructured 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 selfstigmatization affecting surroundings 5 lacking enthusiasm for life expectancy 6 always lingering under the shadow when death picks upthe results showed that mental stress was experienced more than physical problems by people living with hivaids thus prompting new changes to nursing services for hivaids

introduction many international students travel to western countries to pursue higher studies according to unesco the international student population increased from 2 million in 2000 to over 53 million in 2017 more than 50 of these students are enrolled in the us 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 negatively impacting their psychological emotional sociocultural and academic wellbeing 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 these findings were recently confirmed by other research studies for instance by ching et al and kornienko et al 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 not understanding american teaching style difficulty in maneuvering through new campus environment and difficulty in interacting with fellow american peers and faculty though international students encounter academic challenges they have been found to succeed academically however their selfesteem decreased because of academic difficulties reducing their work and personal life satisfaction coping strategies according to lazarus and folkman 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 emotionfocused and problemfocused an emotionfocused 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 problemfocused 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 in most stressful situations particularly in transitional stress using emotion and problemfocused coping strategies are found to have influenced with effective outcomes prior research has highlighted that international students use diverse emotionfocused and problemfocused coping strategies to overcome transitional challenges for instance alazzi and chiodo conducted a qualitative study with eight middle eastern students studying at a us 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 similarly poulakis et al conducted a qualitative study to explore transitional stress among eight greek international students studying in the us 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 selftalk listening to music and diverting oneself from thinking about home served as helpful coping strategies and promoted the overall wellbeing of fifteen international university students studying in the uk 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 selfesteem 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 uk university also focusing on developing communication skills working hard and engaging in community activities overcame transitional stress among 413 international students studying at a us university 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 students transiting from india to the us encounter significant transitional challenges because of the vast difference in the cultures and academic systems of india and the us therefore to help students from india adjust to the us 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 explore the coping strategies used by students from india to overcome the challenges in the us promote awareness about various coping strategies and 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 suggested a sample size ranging from five to twentyfive participants while morse recommended a minimum of six participants a convenience sample of six indian international students enrolled in a researchintensive 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 to conduct purposive sampling it was imperative to specify parameters for selecting study participants accordingly the following criteria were used participants must have been born and studied in india they must not have visited the us or any other country before enrolling as graduate students in the us they must have lived in the us for over a year and they must be graduate students procedure upon obtaining the ethical clearance for this study from the institutional review board 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 us the duration of the interviews ranged from 12 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 modified version of stevickcolaizzikeenʼs method the data analysis was performed using the following ten steps 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 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 horizonalization this is a process of identifying verbatim parts of the transcribed interviews that explain the phenomenon accordingly all interviews were thoroughly analyzed to determine significant verbatim parts describing the phenomenon of coping strategies 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 identifying themes the identified invariant constituents were placed under each heading forming the fundamental themes of coping strategies 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 individual structural descriptions here imaginative variation was applied to arrive at structural descriptions of an experience the underlying and precipitating factors that account for what is being experienced 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 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 texturalstructural synthesisessence 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 openmindedness goalorientedness independent attitude and showing gratitude the participants utilized these strategies to solve the transitional challenges encountered in their personal and academic lives in the us the findings also indicated specific thoughts and actions that helped the participants acquire the identified four coping strategies as shown in figure 1 openmindedness when the participants transited to the us 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 openminded according to the participants openmindedness is a mindset where students accept diverse people ideas and information they demonstrated openmindedness 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 carryʼ 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 thatʼ 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 allround 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 goalorientedness participants got absorbed into the problems they encountered in the us 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 goaloriented 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 hisher 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 us 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 goaloriented and said if you are goaloriented and focused you can come out with good outcomes in the us 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 selfreliant 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 rediffcom 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 us instead of dwelling in negative thinking and once i did this i knew what exactly i needed to do reemphasizing 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 selfconfidence 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 us made participants delve into negative thinking making them sad and stressed for instance krishna described his initial days in the us 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 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 selfconsoling 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 goodʼ and i would say ʻthink of any other international who were in india and think about what they would be going throughʼ 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 undergoʼ 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 thats 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 us higher education four specific coping strategies were identified openmindedness goalorientedness an independent attitude and showing gratitude the participants reported that being openminded 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 selfesteem 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 abovementioned four coping strategies can be acquired as delineated in figure 1 the results of this study indicated that the coping strategy of being openminded 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 openminded students understood other cultural viewpoints better and adjusted effectively to the host country participants adopted openmindedness by improving their communication skills avoiding rigid thinking and accepting people from diverse backgrounds and cultures the second coping strategy is goalorientedness 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 goaloriented students are more competent less focused on problems and less challenged due to transitional stress further the present studyʼs findings are consistent with park et al 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 goalorientedness 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 selfesteem vasileiou et al viewed an independent attitude as a selfreliant coping strategy where the students recognized and accepted the problems and made a conscious effort to comfort themselves according to alsahafi and shin 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 developing healthy longlasting relationships and enhancing student participation in the classroom 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 us the most common resource materials provided by international student support services include online reading materials on their website newsletter articles and brochures therefore the coping strategies identified in this study can be valuable to include in such resource materials to encourage coping skills needed for successful crosscultural transition and adjustment limitations and future direction although the sample in the present study met the requirements of saturation and phenomenological qualitative study 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 us 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 goalorientedness 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 crosscultural transitional challenges

technologies

introduction the american academy of medical colleges s 2020 report demonstrates that the united states 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 23 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 24 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 135 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 of publicly available data on accreditation council for graduate medical education training programs from the national gme census 4 the national gme census is a comprehensive database of demographic information on trainees in acgmeaccredited 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 of all acgme trainees to assess the presence of trends over the 11year period we used logistic regression modeling with the number of trainees aggregated by each of the 11 specialtyyears ay year as the predictor and annual proportion of black and hispanic trainees as 2 outcomes odds ratios and confidence intervals were used to assess for direction and significance of trend or are based on statistical trend modeling for the 11year period to account for multiple testing we used an alphalevel significance of 00025 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 in population representation we fit ordinary least squares regression models for the proportion of black and hispanic trainees using year as the predictor and neweywest standard errors to account for autocorrelation we used marginal estimation methods to generate outofsample predictions for proportions of black and hispanic trainees for each year to calculate the number of years required for physician trainees in each specialty to reach the current racialethnic proportions of the us population we used an alphalevel significance of 001 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 for all analyses the institutional review board at brigham and womens hospital by partners healthcare in boston ma deemed this work exempt results in 2018 134 of the us population identified as black and 183 as hispanic we found the total acgme trainee population in ay 2017 included 55 who identified as black and 78 as hispanic obstetrics and gynecology had the highest proportion of residents who identified as black otolaryngology had the lowest proportion 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 to reach levels of black representation comparable to that of the us obstetrics and gynecology had the highest proportion of residents who identified as hispanic dermatology had the lowest proportion emergency medicine internal medicinepediatrics obstetricsgynecology and orthopedic surgery demonstrated a statistically significant increase in the proportion of hispanic trainees to achieve hispanic representation comparable to that of the us population respectively orthopedic surgery could require 93 years internal medicinepediatrics could require 61 years emergency medicine could require 54 years and obstetricsgynecology could require 35 years 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 134 of the us population who identified as black and 183 who identified as hispanic the majority of clinical specialties were found to have singledigit 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 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 away a limitation of this conceptual approach is projections assume racialethnic proportions of the population will remain constant at 2018 levels actual timetoparity 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 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 while only a minority identify as either black or of hispanic ethnicity 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 within medicine make it less likely for black or hispanic candidates to succeed even among faculty nonwhites have disproportionately lower rates of promotion 13 consequently nonwhite medical students and residents are faced with a low number of physicians with similar sociocultural experiences that often facilitate mentormentee 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 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 professions 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 supplementary informationthe online version contains supplementary material available at declarations conflict of interest the authors declare that they do not have a conflict of interest publishers note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations

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 crosssectional retrospective analysis based on 11 years of publicly available data paired with recent us census population estimates

background persistent and marked inequity is observed for māori at all levels of health 1 education and justice 2 in aotearoa new zealand nonmāori 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 nonmāori patients are prescribed more effective medications 3 are referred more often to specialist services 4 and experience higher quality hospital care 5 nonmāori 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 nonmāori 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 nonmāori 8 9 10 patientcentred 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 1415 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 commission of social determinants in health 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 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 and qualitative research and experiences studies that included māori participants but that did not provide separate data analysis for māori and nonmāori 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 the text of each paper including tables and figures was reviewed in full text by at least two of three authors 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 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 these authors have expertise in māori health research or are training in māori health research three authors who provided intellectual feedback on the coding also have expertise in māori health research 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 were mapped against the world health organization commission for social determinants of health 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 the socioeconomic positioning of people and the intermediary 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 2 policies to reduce risk of exposure of disadvantaged people to healthdamaging factors 3 policies to reduce exposures of disadvantaged people to healthdamaging factors and 4 policies on stratification to reduce inequalities and mitigate effects of stratification results electronic searching yielded 4182 citations of which 293 were examined in full text fiftyfour 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 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 hospitalbased care the number of māori participants in each study ranged between 4 and 130 twentyeight studies reported funding from government sources eleven studies reported kaupapa māori methodologies 12243539565961 65 66 67 70 in 24 studies ethnicity was reported as selfidentified by participants 26 27 31 34 35 37 40 45 4750 55 57 59 61 63 6570 72 in two studies ethnicity was identified through name or records 2956 most 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 46 5254 56 67 68 70 cultural appropriateness of healthcare 394347506669 or to identify the causes and impact of health inequality 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 these included patientclinician communication and relationships clinician cultural competency tikanga in health services the physical clinical environment whānau 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 connectedness costs of clinical care and internalised blame māori consumer experiences in the available studies were less commonly mapped to socioeconomic positioning and the socioeconomic or political context based on māori consumer experiences the most frequently recommended actions to improve māori experiences of healthcare were aligned with reducing risk of exposure to healthdamaging factors 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 recommended actions to reduce the unequal consequences of illness in social economic and health terms included culturally relevant interventions support for whānau 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 followup on health equity based on māori consumer experiences these included data collection processes information sharing and empirical health research 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 aotearoanew zealand health services and programs mapped to the commission for social determinants of health 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 patientclinician relationships and communication including clinician cultural competencies clinical services lacked alignment with tikanga 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 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 healthdamaging 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 capacitybuilding 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 rather than individualcentred 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 communitygoverned health services addressing power imbalances during indigenous patient interactions with health services through trust reciprocity and shared decisionmaking as well as avoiding a deficit model of nonadherence 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 aotearoanew zealand health services and programs mapped to the commission for social determinants of health 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 communitylevel 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 macrolevel 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 codesigned with māori consumers has provided examples of how participatory research actions can inform system and policybased change to address inequity for example research informed by māori consumer and clinician experiences has led to consumerdesigned health service improvements including increased specialist assessment and diagnostic services in rural tai tokeraunorthland 12 and a culturallyacceptable intervention to support safe bedsharing 21 that has subsequently been adopted as policy and evaluated in a randomised controlled trial 7677 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 reemerged through progressive loss of initial gains in immunisation rates among māori children 7 similarly progressive improvements in diabetes monitoring and kidney disease screening for nonmāori 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 7879 the strengths of this paper include the a priori use of a conceptual framework that considers the structural determinants of health 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 nongovernmental 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 supplementary information supplementary information accompanies this paper at 1186s1293901910574 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 metaanalysis of publicly available studies competing interests the authors declare they have no competing interests

background persistent inequities in health experiences and outcomes are observed for māori compared to nonmāori 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 healthcompromising 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 healthdamaging factors community iii exposures to healthdamaging factors public policies and iv mitigating effects of socioeconomic and political stratification environment results fiftyfour 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 patientclinician 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 systemlevel strategies recommendations were predominantly focused on actions to reduce risks of exposure to healthdamaging 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

introduction missed appointments and noshows are a challenge to public service systems and in psychiatry the rate of nonattendance i is double that of other specialties young people are especially vulnerable in regard to mental health services and due to a gap between childadolescent 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 furthermore youth who do receive treatment have the highest risk of missing appointments missed appointments prevent people with mental health difficulties from getting professional help increase risk of hospital admission delay access for other patients and increase the risk of suicide attempts hence nonattendance 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 because of high levels of nonattendance throughout mental health services there has been great attention in the literature on understanding factors contributing to service engagement and what might enhance attendance rates in two public service sectors in denmark the renew 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 nonattendance but to develop and adjust renew to the danish setting through a participatory research approach however throughout 2015 it became clear that nonattendance 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 taperecorded discussions about how renew could be qualified to try to reduce nonattendance therefore it made sense to investigate how this predominant focus on nonattendance has influenced professionals understanding of their work and of youth in this article we investigate professionals discussions about nonattendance 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 commonsense assumptions moreover understanding discourses about nonattendance will help to reveal established normative organisational logics and identify ongoing or future cultural changes within the organisations 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 processfocused as opposed to personfocused care kenwright and marks describe how nonattending patients are referred to as unmotivated or unreliable which might have unfortunate consequences for patientstaff relations based on empirical data from the participatory work with the renew model in denmark the purpose of the article is to investigate commonsense assumptions and inherent organisational logics by identifying discourses in professionals negotiations about youths nonattendance 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 in denmark renew targets young adults aged 1830 with mental health difficulties and the project was implemented in two public health service sectors outpatient 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 outpatient services for nonpsychotic disorders is restricted through socalled packages comprising a certain number of different services dependent on diagnosis eg patients with anxiety disorder receive a standardised package of 15 hours of clinical treatment altogether treatment is typically interdisciplinary and managed by a psychiatrist a psychiatric nurse andor 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 centres 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 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 masters 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 noshows or nonattendance was coded as such in nvivo to achieve the fullest possible understanding of the material a rough and exploratory thematic analysis on discussions about nonattendance 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 faircloughs framework 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 coauthors 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 the regional committee on research ethics was also contacted for approval 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 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 startup 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 nonattendance assumptions theoretical framework and analytical strategy as described above discourse analysis can help shed light on inappropriate and unacknowledged organisational commonsense practices 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 faircloughs 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 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 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 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 as will be shown later in the article in our analysis we have utilised it to assist our understanding of how professionals discourses about nonattendance reflect organisational logics we have analysed intertextuality by identifying where the texts explicitly refer to an earlier text 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 ie different discourse and genres and styles hence orders of discourses can be understood to be the sum of different discursive types that exist within a given domain 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 nonattendance and we pay especial attention to whether they are sentimental or distant to analyse which discourses the chosen wordings might represent we have also been particularly interested in presuppositions which is the takenforgrantedness the text producer communicates as an already established fact 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 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 formsmeanings of discursive practices and they contribute to the production reproduction or transformation of relations of domination the most efficient ideologies are embedded in discourses and become naturalised or commonsense 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 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 therefore our focus has been to look for ideologies behind discourses and to determine whether discourses reveal commonsense practices in order to determine power balances analysis in the following analysis we present discourse representations about nonattendance 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 nonattendance 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 to do so due to their anxiety she says that youth has problems indicating that their mental health problems are the main reason for their not attending although in line 1214 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 nonattendance 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 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 b sending them a friendly reminder of the next session via text or c trying to be flexible with the planning of sessions eg 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 eg 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 in patients perspective organizational factors also effect quality of nursing and according to nurses themselves high quality nursing care entails interactions with family and should address all needs of patients 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 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 therefore in order to help the body and mind recover professionals will need to assist with activities which would normally be categorised as private eg help with sleeping eating grooming etc this type of work has also been characterised by strauss et al as sentimental work 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 34 where businessinspired 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 nonattendance 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 eg 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 serviceusers is recognised as a general developmental tendency within the professionalpatient relationship and it is part of a development within healthcare where prevention and health promotion are becoming increasingly important 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 decisionmaking 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 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 eg 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 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 cocreator 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 nonattendance 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 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 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 im 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 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 youths are also described as demanding as having a hard time concentrating and finishing things and even as justifying their choice to live on social benefits in denmark the term zapperculture 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 was first used to describe needs of 1618 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 with the expansion certain characteristics have also been attached to neet eg 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 1415 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 eg 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 nonattendance are ambivalent interwoven tensionfilled 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 nonattendance 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 timeouts from the service meaning youths should be banned for a period if they failed to give notice when not attending more punishment style strategies included different forms of sanctioning eg reducing youth social benefits if they neglected to attend without cancelling a different punishment style strategy discussed was saying names of nonattendees out loud in the group 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 eg 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 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 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 selfregulate or conduct their own conduct rather than trying to manage them through authoritarian or disciplinary actions since empowerment can be understood as a strategy for governing individuals with the aim of reducing nonattendance 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 one strategy to raise efficiency in an organisation can be to raise levels of empowerment among workers 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 eg implementing an attendancesheet to be filled out by youths in order to contain possible future attendance challenges these strategies all contribute to raising efficiency through reducing nonattendance 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 abovedescribed 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 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 dont show up we dont have enough confrontation hours with youth and then we feel pressured to come up with solutions to solve this problem its 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 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 nonattendance 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 nonattendance 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 eg installing a system with automatic textmessage 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 eg the above exercise or registration of nonattendance 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 eg 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 furthermore the professionals experiences of pressure due to organisational attempts to streamline health care services are also described elsewhere 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 empowermentbased approach in trying to reduce nonattendance 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 nonattendance this also alleviates professionals of their responsibility to deal with the issue professionals and policymakers 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 nonattendance the literature regarding nonattendance is actionoriented 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 nonattendance 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 the norms and conventions embedded in them in the occupational sector a predominant controlmechanism is reducing the social benefits for youths if they do not live up to their responsibilities 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 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 this might be a different example of a distancing process taking place in discourses about nonattendance 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 nonattendance in services provided for young adults with mental health difficulties we uncovered three discourses used when discussing nonattendance 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 nonattendance elsewhere such as on societal and cultural processes explaining and understanding nonattendance 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 nonattendance 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 nonattendance 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 nonattendance unless referring to literature using a different terminology ii mental health difficulties constituted nonpsychotic 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 nonpsychotic disorders to people without diagnoses iii the professional with a masters 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 nonspoken language vii fairclough on ambivalanceintertextuality 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 texts intertextual network and their meaning may be ambivalentdifferent meanings may coexist and it may not be possible to determine the meaning 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 conscious choice 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 2017 document version early version also known as preprint 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 while at the same time reducing nonattendance therefore there is an inherent risk that professionals will be criticised for not fulfilling their duties to reduce nonattendance while also caring for the target group hence professionals being placed in this inextricable situation seek new and different ways to understand nonattendance through a distinct and more general youth culture perspective as exemplified by the request for more knowledge about youth culture when professionals relate nonattendance 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 nonattendance 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 nonattendance 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 nonattendance to larger cultural and social processes furthermore this framing entails a distancing of oneself from youth since the problem of nonattendance 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 als conclusion that time pressure and an environment of processfocused care seem to reduce compassionate language using less compassionate language due to time pressure and processfocused 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 reallife situations hence we did not ask professionals to directly reflect and comment on nonattendance 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 furthermore in interview situations interviews might also be affected by how the interviewee and interviewer perceive each other and the situation by using reallife 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 eg 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 we argue however that it would not be possible to do a thorough analysis of every concept from faircloughs 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 mothertongue when discussing nonattendance 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

nonattendance 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 nonattendance 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 tensionfilled 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 nonattendance to general social and cultural processes

introduction as life expectancy has increased in highincome countries there has been a global debate about whether additional years of life are free from illhealthdisability it is now largely accepted that oldage disability has declined in the usa 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 workingage population in the absence of direct evidence policymakers have often made claims based on selfreports 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 policymakers have assumed that workingage morbidity must have improved in recent decades given improvements in mortality 6 and that therefore highrising levels of claims are not genuine 11 12 almost the only direct evidence on changes over time in workingage morbidity in highincome countries comes from the usa contrary to policymaker expectations these studies have generally found deteriorating open access morbidity since the mid1990s particularly activities of daily living and physical functioning 13 14 15 16 other studies have focused on the older workingage 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 workingage americansdespite a 23 fall in workingage mortality 19932013 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 workingage morbidity in england has declined or does the evidence support alternative hypotheses of stable or even declining morbidity we answer this using the health survey for england a highquality 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 workingage morbidity in any highincome country outside the usa second we supplement selfreport measures with 10 biomarkers which are particularly valuable for showing genuine changes over time but which have rarely been examined alongside selfreported workingage morbidity trends 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 highquality data we use the hse an annual governmentsponsored crosssectional survey of 300011 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 199193 before changing to natcen in 1994 we focus on 19942014 given evidence of a discontinuity at this point ► second topic coverage of hse varies yeartoyear 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 48 this new analysis uncovered further discontinuities ► third hse excludes those in communal establishments while a smaller problem for the workingage population than older ages 2 we minimise the impact of rising university attendance by focusing on those aged 25 the upper limit of the workingage population is set to 59 and 64 to match state pension ages at the start of the period ► fourth hse supplies nonresponse weights from 2003 however there had been a substantial decline in response rates prior to the introduction of weights particularly for blood samples we therefore reduce nonresponse biases by creating new nonresponse 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 timeseries dataset the code enabling other researchers to assemble this extended timeseries 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 patientdisability advocacy groups who will receive jargonfree summaries of the research measures we cannot interpret changes over time correctly without understanding different ways of operationalising morbidity 1 general healthdisability measuresfor example how is your health in generalare 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 51 p21824 this can even occur within individuals if they change their internal standards of measurement over time 52 numerous causal factors contribute to variable comprehension reporting ranging from the experience of illhealth itself 52 to nonhealth factors such as social security incentives 53 genderedrelated and agerelated 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 selfrated health in the usa 10 open access general health at the same time as activity limitations have fallen 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 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 selfreported types of lsi 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 awarenesslabelling of peoples experiences 2 symptombased some measures are based on selfreports of illhealth symptoms or specific domains of activity limitations these measures are either single items or validated symptom scales 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 statisticsa un agency founded in 2001have brokered a consensus that crosscountry 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 impairmentbased question will be interpreted identically over time 63 64 3 biomarkersthat is objective measures of biological or physiological measureshave 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 stilldebated relationship to morbidity and do not cover several important morbidity domains 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 symptombased measures capture morbidity well and are reasonably reliable and labelbased 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 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 publiclyavailable timeseries 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 nonlinear 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 startend years available for different measures and it does not require any assumptions about the functional form of trends individual survey years are grouped into 34year periods to increase sample size and precision but singleyear 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 …where periodi refers to a vector of period dummy variables 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 understandodds ratios have no easy realworld interpretation for policymakersbut 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 cutoff 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 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 and respiratory illness which have both seen large falls in mortality 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 yet when we look at selfreports we see large rises over time there has been an increasing diagnosis of high blood pressure and increasing prescriptions of blood pressurelowering drugs these may have helped reduce the underlying incidence of high blood pressure while simultaneously raising peoples awareness of morbidity table 2 further shows declines in several key types of cvd whether measured through peoples reports of the disease itself or their reports of its symptoms nevertheless the morbidity declines are often not on the scale of the declines in mortality 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 looking at its subcomponents this seems to be due to possible increases in diagnosed irregular heart rhythm and other heart trouble finally table 2 shows that symptomsbased measures of respiratory morbidity have improved particularly copd symptoms and breathlessness and more uncertainly for recent wheezing asthma and wheezing stopping sleep again though diagnosisrelated measures of asthmareported diagnoses or selfreports of having asthma as a lsihave 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 selfreported cvd conditions such as heart attacks have only declined by a smaller amount and recent doctordiagnosed 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 in this section we focus on three areas where there have been widespread claims of increasing prevalenceobesity diabetes and mental health looking at table 3 we do indeed confirm a large rise in obesity in hse the rise in high waisthip ratiossometimes 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 this clear rise in diabetes has occurred despite declining age 064 death rates from diabetes which fell by more than onethird 19942013 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 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 selfreported mental health as we might expect from increasing treatmentdiagnosis we see a doubling in people reporting a mental health lsi however the symptomsbased measures show a more mixed picture ► neither of the measures that capture more moderate mental illhealth show rising illhealth we can see moderate mental illhealth symptoms fell between the mid1990s and the mid2000s before rising in 2009 ► in contrast the single measure capturing a feeling of extreme anxietydepression today does show rising morbidity to see if there were similar signs of rising mental illhealth at extremes in our other measure we looked at a much higher ghq threshold of 10 negative responses out of 12 questions unlike the conventional ghq measure this also showed an increase over time 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 ghqand indeed have found that rises in distress over time 19912008 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 mid1990s to the mid2000s before rising around the time of the 2008 economic crisis 77 whereas more extreme mental illhealth has more consistently risen activity limitations musculoskeletal and pain painmusculoskeletal conditions are a major component of workingage 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 somebut not allhse measures focused on pain and musculoskeletal morbidity arthritis as a lsi has declined there are some signs that other musculoskeletal lsis have also fallen and noticeably fewer people say that they have any paindiscomfort today although there has been no change in people saying they have extreme paindiscomfort 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 hsealthough the increases are sometimes uncertain and are smaller after adjusting for changes in agesex structure moreover the timing of the rises differ between the measures the trend in limitations lasting at least a year shows a rise in 19941996 to 20012003 but the two measures of limitations today do not instead showing a possible slight rise in the more recent period 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 selfreports ► changes over time are available for two biomarkers of inflammation and fibrinogen these are associated with a number of conditions including heart disease diabetes cancer 81 andin the case of crpeven depression 82 open access the ci is wide and there is a nonnegligible 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 communicationrelated morbidity this shows a fall in eyeear conditions as well as hearing limitations in the earlier period 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 workingage population particularly outside the usa in this paper we have analysed changes over time in workingage morbidity in england 19942014 using a highquality repeated crosssectional study we see improvements in cardiovascular morbidity respiratory morbidity and anaemia but deteriorating obesity diabetes some biomarkers and feelings of extreme anxiety depression we see little systematic change over time in more common mental illhealth or musculoskeletal conditions painmobility and selfcare limitations symptomatology and chronic disease diagnoses also often go in different directionschronic disease diagnoses have sometimes stayed stable or even risen at the same time that underlying symptomatology has declined 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 under25s for whom comparability of survey coverage is unlikely and construct new nonresponse weights nevertheless we must note three limitations first response rates for each stage of the hse have declined over time and while we create new nonresponse weights covering the entire period it is still possible that socioeconomically disadvantaged people have become less likely to respondand as they tend to be in worse health this could mask deteriorating morbidity second even if nonresponse 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 workingage population seems to be rising including inter alia cognitive complaints 83 allergic disorders 84 and liver cirrhosis 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 morbiditybut for policymakers this leaves the question of whether workingage morbidity as a whole is unchanged getting better or getting worse 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 selfrated health this shows little systematic trend for falling morbidity to be seen in the measures that predict health the most this provides greater support for h2 than h1 or h3 mirroring evidence from in conclusion despite considerable falls in workingage mortality and gains in life expectancyand the ensuing expectations of social security policymakers for improving morbiditythere is no evidence of systematic improvement in overall workingage 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 workingage 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 workingage population outside the usa given their importance in public debateparticularly in discussions of retirement ages and disability benefitswe 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 25 has been corrected twitter ben baumberg geiger benbaumberg bmj open first published as 101136bmjopen2019032378 on 15 march 2020 downloaded from on february 18 2024 by guest protected by copyright bmj open first published as 101136bmjopen2019032378 on 15 march 2020 downloaded from on february 18 2024 by guest protected by copyright bmj open first published as 101136bmjopen2019032378 on data availability statement data are available in a public open access repository the health survey for england 19942014 are available for free to registered users at the uk data service see beta ukdataservice ac uk datacatalogue series series id 2000021 abstract there are no conditions for reuse for noncommercial 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

bb has workingage morbidity been declining changes over time in survey measures of general health chronic diseases symptoms and biomarkers in

introduction events happen in realworld and on social networks in online shopping an event can represent user behaviors such as click cart or purchase in geophysics an event can be an earthquake in online social media events can be user actions over time which have some features like user influence content time and connectivity of the social network 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 or holidays like christmas apple special event figure 1 google trends about apple we add the relative events on the figure the socalled 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 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 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 however these models heavily depend on manually selected features it is a fatal flaw as designing features requires much expertise especially for largescale dataset with high dimensional features which may severely limit its application recently some other prior arts based on generative approaches are proposed 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 autoencoder is a powerful class of probabilistic models and has the ability to model complex distributions in recent years vae are used in timeseries these models integrate vae with rnnlstm 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 autoencoder to event sequence modeling that can use the latent information and capture the distribution over event sequences finally on two realworld datasets we find that vepp has higher loglikelihood 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 ie featurebased 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 then different machine learning algorithms are applied to build a regression or classification model such as contentbased models simple regression models regression trees and probabilistic collaborative filtering 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 realtime online settings like realtime 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 a temporal point process can be used to capture the interarrival times of event sequences it directly models complicated event sequences in which historical events have influences on current and future ones reinforced poisson processes is employed to model the phenomena in social networks hawkes process a variant of poisson process has been proven to be useful for describing realworld data in social network analysis furthermore multiply variants of hawkes process are proposed to solve the issues of event sequences luo et al proposed multitask multidimensional hawkes processes for modeling event sequences lukasik et al 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 autoencoders problem definition as shown in figure 2 the input is a sequence of events x 1n where x n is the nth event the event x n is represented by the event type k n ∈ 1 2 • • • k and the time inter val τ n ∈ r the time interval τ n t n t n1 is the difference between the starting time of event x n1 and x n given a sequence of events x 1n1 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 a temporal point process is characterized by the conditional intensity function λ which is conditioned on the past events x 1n1 the conditional intensity is the expected infinitesimal rate at which events are expected to occur around time t given the n1 past events the probability density function for the time interval of next event is f λe τn 0 λdu the poisson process is the simplest and most ubiquitous example of point process which assumes that events occur independently of one another the conditional intensity is λ λ where λ is a positive constant furthermore more complex point processes have been proposed like hawkes process and selfcorrecting process all these processes try to model the dependency on the past events for example hawkes process is a selfexciting process in which the arrival of an event causes the conditional intensity p k 4 0 λ λ 0 n1 i1 φ 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 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 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 autoencoders a variational autoencoder 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 ∝ p θ p θ the simple prior p θ is usually chosen to be a multivariate gaussian the parameters of complex likelihood p θ are produced by neural networks approximating the intractable posterior p θ with a recognition neural network q φ the parameters of the generative model θ as well as the recognition model φ can be jointly optimized by maximizing the evidence lower bound l on the marginal likelihood p θ log p θ kl l ≥ l e q φ log q φ p θ 3 recent works apply vaes to timeseries data including video text and audio such models usually integrate a timestep vae with rnnlstm the elbo thus becomes a summation of timestepwise variational lower bound l θφ n n1 e q φ log p θ klp θ 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 at time step n the model takes the event x n as input which is the prediction target and also the past events x 1n1 these inputs are used to product a conditional distribution q φ from which a latent code z n is sampled the true distribution over latent variables z n is intractable we rely on a timedependent inference network q φ that approximates it with a conditional gaussian distribution n to prevent z n from just copying x n we force q φ to be close to the prior distribution p using a kullbackleibler divergence term at each step during training a latent variable z n is drawn from the posterior distribution q φ the output event xn is then sampled from the distribution p θ of the conditional generative model which is parameterized by θ for convenience we assume the event type and time intervals are conditionally independent given the latent code z n p θ p θ p k θ p τ θ where p k θ and p τ θ are the conditional generative model for event type and time interval respectively it is a standard assumption in event prediction 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 i1 p k θ 1 where p k θ 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 similar to a standard temporal point process model p τ θ λe λτ n if τ n ≥ 0 where p θ is a probability density function over variable τ n and λ 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 twostep 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 τ emb n emb τ x emb n emb kτ here emb k emb τ and emb kτ represent the embedding functions a onehot 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 n1 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 f prior 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 n1 lstm embedding decoder z n n at each time step the model uses the history of event sequences and interarrival 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 1n1 then an event type kn and time interval τn are generated as follows kn ∼ p k θ τn ∼ p τ θ the decoder network for event type f k θ is a mlp with a softmax output to generate the probability distribution in equation p k θ f k θ the decoder network for time interval f τ θ is another mlp producing the parameter of the point process model for temporal distribution in equation λ f τ θ the lstm encodes the current event and the past events into a vector representation h n lst m φ 13 recurrent networks turn variable length sequences into meaningful fixedsized representations the parameterization of the generative model results in the factorization p n n1 pp 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 zn σ 2 zn enc where μ zn and σ zn 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 n1 this conditioning on h n1 results in the factorization q n n1 q 16 learning we train the model by optimizing the variational lower bound over the entire sequence comprised of n steps l θφ n n1 log p θ klp θ 17 given the latent code z n the event type and time interval are conditionally independent so the loglikelihood can be written as follows e q φ log p θ e q φ log p k θ e q φ log p τ θ 18 given the form of p k θ the loglikelihood reduces to a cross entropy between the predicted event type p k θ and the ground truth k n given the ground truth time interval τ n we calculate its loglikelihood over a small time interval δ τ under the predicted distribution log τ n δτ τ n p τ θ dτ n logδt λτ n 19 experiments in this section we evaluate the performance of vepp on two realworld datasets ie retweets dataset and memetrack dataset 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 we divide the events into k 3 types retweets by small medium and large users small users have fewer than 120 followers medium users have fewer than 1 363 and the rest are large users given the past retweet history our model must learn to predict how soon it will be retweeted again and how popular the retweeter is 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 timestamped instances of meme use in articles and posts from 15 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 memes 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 gomezrodriguez et al 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 and are trained using the adam optimizer for 1 000 epochs with batch size 32 and learning rate 0001 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 on the test set baselines poisson process the intensity function is a constant which produces an estimate of the average interevent gaps hawkes process hawkes process is a selfexciting 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 selfcorrecting process we fit a selfcorrecting process with the intensity function in the book of daley and verejones recurrent marked temporal point processes rmtpp is proposed in the study of du et al 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 loglikelihood of event type to compare our model with the hp and rmtpp for poisson process and selfcorrecting process their performance on event type prediction are similar to hawkes process and not very satisfactory ll log n i1 f n i1 log f n i1 l we also compare root mean square error of interarrival time prediction 08 658 658 648 668 memetrack 109 107 105 102 100 rmse 1 n n i1 2 051 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 memetrack 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 ie 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 loglikelihood 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 autoencoder 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

many events occur in realworld 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 featurebased approaches and generative approaches are utilized to model the event sequence featurebased approaches extract a variety of features and train a regression or classification model to make a prediction yet their performance is dependent on the experiencebased feature exaction generative approaches usually assume the evolution of events follow a stochastic point process eg 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 autoencoder to event sequence modeling that can better use the latent information and capture the distribution over interarrival time and types of event sequences experiments on realworld datasets prove effectiveness of our proposed model

introduction social inequalities in mortality have been extensively documented 12 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 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 458 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 factorsfor example the emergence and the decline of the smoking epidemic and the arrival of an obesogenic food environmenthave 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 mid20th century in this paper we compare the associations between various childhood circumstances and adult total and causespecific mortality in finland across cohorts born in 193650 and 196175 examine whether the effects of childhood characteristics are operating through attained adult social characteristics and examine whether these effects may have changed across the two cohorts methods participants and mortality followup we used two 10 random samples of households drawn from the 1950 and 1975 finnish censuses the samples were linked with registerbased followup of death records using personal identifiers available to all permanent residents of finland we included individuals aged 014 years living in private households at the time of the 1950 and the 1975 census 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 197095 and to death records for the years 19702007 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 and the individuals own educational attainment from the first quinquennial endofyear census after the subjects turned 30 adult characteristics were thus measured at ages 3034 depending on the birth year mortality followup begun at the time of the assessment of adult characteristics at age 3034 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 to guarantee comparability in the mortality followup 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 4155 cause of death was classified according to the 8th 9th or 10th revision of the international classification of diseases and deaths with coding made comparable across the icd revisions by statistics finland our final analyses were based on 1 467 360 personyears and 3592 deaths in the 1950 sample and 1 527 929 personyears 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 014 we measure both socioeconomic and housingrelated characteristics for highest parental occupational class we distinguished the following groups nonmanual manual farmers employersselfemployed and others we coded highest parental education as upper secondary or higher lower secondary and primary school or less of the housingrelated characteristics home ownership included home owners renters and othersunknown we characterized childhood housing conditions by household crowding coded as the number of persons per heated room in the dwelling childhood family structure distinguished twoparent and singleparent families adult characteristics adult characteristics were measured in subsequent censuses when the participants were aged between 30 and 34 years when most had completed their education and begun occupational and family careers occupational class was divided into nonmanual manual farmers employersselfemployed and 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 higher tertiary education lower tertiary secondary and basic or primary home ownership included home owners renters and others and unknown marital status was coded as married divorcedseparatedwidowed and never married or unknown causes of death we examined allcause mortality as well as alcohol¼related accidental and violent causes of death separately as these are common among finnish people statistical methods we used mixedeffects survival models to estimate allcause and causespecific mortality from the age of 3034 until the end of followup which for the oldest individuals was 55 years the baseline hazard was assumed to follow the weibull distribution stratified by sex as the data consist of persons nested in families we use a twolevel random intercept specification to take account of family clustering and allow for the estimation of familyspecific random intercepts the results are presented as hazard ratios based on coefficients from the proportional hazard parameterization hazard ratio ¼ e b and their 95 confidence intervals 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 failuretime metric of the same model to estimate the familylevel variance h because the individual level error term in weibull models follows the gumbel distribution the individuallevel 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 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 142 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 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 singleparent households had higher allcause mortality in early midlife whereas home ownership in childhood was unassociated with early midlife mortality 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 housingrelated circumstances such as living in rented housing in the last column and living in singleparent 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 and external causes of death 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 allcause mortality differentials by childhood housingrelated 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 midlife mortality were substantially attenuated after adjusting for the individuals own adult social characteristics this occurred for both cause of death groups and allcause mortality after these adjustments the associations between childhood circumstances and midlife 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 correlationsa summary measure of all early life and familial influences shared by siblings both observed and unobservedhave increased for total mortality from 017 in the 1950 cohort to 029 in the 1975 cohort sibling correlations for external causes of death increased from 028 to 045 and this increase cannot be explained by adjustment for achieved adult social characteristics discussion we evaluated the association between childhood circumstances and midlife mortality in two finnish cohorts born in 193650 and 196175 we showed persistent associations between early life socioeconomic and family circumstances and midlife mortality which are almost fully mediated through achieved social characteristics at ages 3034 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 housingrelated 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 singleparent household and in the case of alcoholrelated accidental and violent causes also with having a primary educated or manual parental background the observation that alcoholrelated 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 bingedrinking 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 2425 for the purposes of this study reliable evidence on alcohol use is difficult to obtain mainly because of survey nonresponse 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 longterm relaxation of alcohol control policies in finlandaffecting the younger cohorts more stronglymay have exacerbated these associations overall these results imply that despite declining mortality in midlife 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 526 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 midlife 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 everstronger 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 childhoodin particular those between childhood family type and home ownershipand 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 influenceswith 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 measurecharacteristics that are typically also measured in earlier studiesdo 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 or loss to followup second our relatively large samples enabled us to study both total and causespecific 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 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 singleparent 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 midlife mortality this was done by calculating a sibling 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 midlife 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 midlife mortality is driven by ever stronger associations of childhood circumstances with alcoholrelated accidental and violent causes of death supplementary data supplementary data are available at ije online conflict of interest none declared

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 registerbased samples of households drawn from the 1950 and the 1975 finnish censuses with consistent followup of socioeconomic and housingrelated characteristics and early midlife mortality at ages 3055 years we estimate survival models for the associations between childhood circumstances and allcause internal and external mortality for cohorts born in 193650 and 196175 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 1030 excess causespecific 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 externalcause mortality conclusions our analyses show that the associations between childhood characteristics and midlife mortality are substantial and almost fully mediated by achieved adult social

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 panclass 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 sheffields 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 workpeoples 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 panclass 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 cooperative 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 coop 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 interwar period the leeds workpeoples hospital fund the leeds workpeoples hospital fund came into operation at the end of 1886 on the initiative of alderman fred spark a midcentury 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 sparks 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 subculture 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 liblab 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 citys 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 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 £14000 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 of ways to mobilise workers contributions it received the lions share of the income raised by the fund thus in the first few years following the removal of a small administration charge of around 56 the income was divided 82 to lgi 10 to the dispensary and 8 to the women and childrens hospital which by 1890 was equivalent to around £4300 £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 £1300014000 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 £5250 of the £13250 income around 40 of the funds 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 midnineteenth century radical liberalism and liblabism of leeds 42 but it also owed much to a deep rooted view of independence and collective support bound up in sparks 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 prewar 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 workpeoples hospital fund survive into the interwar period it positively flourished as a source of income for the citys 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 £22000 to £98000 however this increase was not straightforward as income grew only slowly during the 1920s largely due to very poor economic conditions in the citys traditional industries 44 yet despite the impact of the great depression which was severe on the engineering and textile sectors 45 the funds income increased rapidly in the 1930s more than doubling between 1930 and 1938 to reach almost £100000 this major improvement was secured without the introduction of any significant new category of income the sources changing little between the wars 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 burtons 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 150000 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 workpeoples 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 doctors 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 7595 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 similarly ward income 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 and the leeds maternity hospital each secured more of the income and together the four other hospitals and the leeds nursing association received over £20000 by the outbreak of the second world war this distribution reflected the greater diversity of the membership especially the contribution made by women workers with the result that leeds maternity hospital 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 £3200 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 inpatients 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 to treat fund members and their dependents at st james and st marys 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 pacmunicipal 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 funds 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 jamess 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 jamess 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 mid1920s the number of patients sent to the homes stagnated at around 1000 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 today 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 workpeoples hospital fund was a very successful organisation which saw its membership on a continuous upward curve reaching almost 200000 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 this association with the fund resembled workers other mutualist engagements whether as members of the cooperative society which had over 100000 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 womens 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 coop 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 mens 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 kirkstalls 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 northeast ward the conservative councillor jw hemmingway was president and a prominent supporter of the movement providing prizes of gold watches for the pub collectors northwest 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 40000 for the monday and over 10000 for the tuesday with 1920 seeing almost 70000 pass through the turnstiles by 1930 however attendances had fallen to nearly half that figure numbering around 2530000 for the monday and just 57000 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 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 womens 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 bylaws 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 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 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 armslength 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 dont 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 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 jamess hospital he said that the workpeoples 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 £100000 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 boyles 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 midtwentieth century britain evident in friendly societies the coop 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 selfhelp 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 workpeoples 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 workpeoples 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

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 workingclass especially the fate of mutualist organisations between the wars remains underresearched 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 selfhelp 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 mid1880s 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 panclass 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

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 subsaharan africa where 256 million people lived with hiv women of reproductive age account for about twothirds 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 mothertochild 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 during pregnancy and more by contraceptive use among hivinfected women which is the fourth component of preventing mothertochild transmission in 2005 reynolds et al 3 estimated that the level of contraceptive use could prevent over 173 000 unintended hivinfected births each year in subsaharan africa indeed family planning showed numerous benefits for hivinfected women such as the reduction of morbidity and mortality due to pregnancy and also the improvement of health of hivinfected 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 followup visits ► finally we relied on selfreported reproductive health behaviour through a facetoface 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 subsaharan africa given the progress in pmtct with the expansion of art most of the hivinfected 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 hivinfected women 9 10 11 in ghana a study showed that only 426 of hivinfected women used modern contraceptive methods at komfo anokye teaching hospital in 2012 11 while in eastern nigeria it was reported that 731 of hivinfected women were using modern contraceptives in the same period 10 in many studies conducted in subsaharan africa the reported factors influencing the use of contraceptive among hivpositive women were sociodemographic characteristics reproductive characteristics being on art and knowledge of the partners hiv status 9 10 11 12 13 14 in 2015 togo had about 110 000 people living with hiv and aids including 59 000 women aged more than 15 years old and 9000 children aged 014 years 15 in addition the prevalence of hiv infection is almost twice higher among women than men 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 in 20132014 16 however contraceptive use among hivinfected 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 hivinfected women enrolled in hiv care centres in two health regions in togo methods study design this was a crosssectional study conducted in two health regions in togo over a period of 4 months from may to august 2016 the study targeted hivpositive women of reproductive age 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 during cultural and traditional events increasing the risks of hiv transmission in 2013 the prevalence of hiv infection was estimated at 22 in the centrale region and 18 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 were aged between 15 and 49 years old had a sexual partner within the last 6 months and 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 nonprobabilistic convenience sampling was carried out indeed in these five selected hiv care centres it was proposed to enrol any plwha who consulted for a followup 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 hivinfected 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 pilloral contraceptives intrauterine device diaphragm injection emergency contraception or implant statistical analysis of data data entry was performed using epidata v31 software data were then exported for statistical analyses using spss v170 for continuous variables mean and sd were calculated while for categorical variables we calculated the proportions our main outcome variable was hivinfected women who were currently using any modern contraceptive methods pearsons χ 2 test or fishers 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 020 were introduced in a logistic regression model to estimate the adjusted or 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 from the model our final model included only hivinfected 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 hivinfected women of reproductive age and who were sexually active were enrolled into this study of whom 267 were in the centrale region and 194 in the kara region the mean age of the participants was 343±71 years ranging from 16 to 49 years among them 406 had primary education or higher education level 547 were living in couple and 623 were living in an urban area out of the 461 women interviewed 415 were on art and for more than 2 years for 71 of them the mean duration on art was 41±28 years a quarter of the participants had a cd4 cell count of 035 × 10 9 l at the last visit patients were classified as stage i or stage ii based on the who clinical classification at the time of the survey the partners hiv status was unknown for 564 of the participants most of the patients were followed up in a public hospital centre in a centre with available doctor or with a psychologist reproductive health outcome the majority of women reported having at least one child while six out of ten participants expressed desire of having kids four hundred and forty six women reported that they heard about contraceptives methods among them 702 were informed by healthcare providers at the time of the survey the proportion of women who were using a contraceptive method was 747 and among them 745 reported using condom 84 were using hormonal contraceptive and 169 reported using dual methods combining condom and hormonal contraceptive for 15 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 571 in women with no education to 828 in those having reached the secondary education level or higher however this proportion was significantly higher among women at stage i than those at stage ii or those at stages iii and iv the prevalence of contraceptive use was significantly lower in women living in couple higher among those who had children and higher in women on art for 2 years or more women followed up in a private centre or a centre with a psychologist were more susceptible to use contraceptive methods 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 and four times more likely to use a contraceptive method than those who did not have any education whereas participants living in couple were 55 less likely to use a contraceptive method women who reported having children and those followed up in a private structure were almost three times more likely and aor254 95 ci to report current use of contraceptive patients at aids clinical stage iii or iv were 53 less likely to use a contraceptive method than those at clinical stage i in addition this likelihood of using contraceptive is even lower for hivinfected women at aids clinical stage iii or iv followed up in private centres discussion in this study conducted in two regions in north of togo 967 of hivinfected 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 hivinfected women a high proportion of knowledge on contraceptive methods was also reported among women aged 1549 years in the general population in togo in 20132014 16 and among hivinfected women on art in ethiopia 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 threequarters of the participants were using a contraceptive method this proportion was higher than that of 199 reported in the general population in 2013 in the demographic and health surveys in togo 16 this was evidenced in prior studies conducted in subsaharan africa 12 19 which reported that hivinfected women seemed to be more likely to use contraceptives than hivnegative women in public health facilities this could be explained by the fact that hivinfected women are frequently in contact with health workers and received more information on reproductive health during their followup hivpositive women are strongly encouraged to use contraceptive methods to prevent mothertochild transmission of hiv similar results were found in southeast nigeria or in ethiopia where a high proportion of hivinfected women used contraceptives however lower rates of contraceptive use were reported among hivpositive mothers in some previous studies in ethiopia uganda or ghana 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 nongovernmental organisations have also been established to promote reproductive health through the distribution of contraceptive methods this would have encouraged hivinfected women to use these methods as reported in previous studies in western africa 911 condom was the most common contraceptive method used by hivinfected 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 hivinfected 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 hivinfected women did not know the hiv serostatus of their sexual partner it is therefore important to know the influence of the hivinfected woman in the decisionmaking process of condom use or not in a couple in this study the decision to use contraceptive methods in hivinfected 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 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 subsaharan 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 hivinfected 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 wellbeing 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 hivinfected 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 nonprofitmaking facilities it is reported that care providers are motivated to maximise patients satisfaction in order to retain them and this through the provision of goodquality 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 hivinfected women to use these services among hivinfected 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 hivinfected patients in the advanced stage of the disease are most often referred for treatment in public hospitals hivinfected 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 informationanalysis by contraceptive types which can impact mothertochild transmission finally we relied on selfreported reproductive health behaviour through a facetoface 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 hivinfected 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 followup 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

introduction contraceptive use among hivinfected women in togo is poorly documented we aim at assessing the prevalence of modern contraceptive use and associated factors among hivinfected women in togo design crosssectional study setting the study was conducted in five hiv care centres in the centrale and kara regions in togo participants we included 461 hivpositive 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 hivinfected women were interviewed with an average age of 343 ±71 among them 332 731 women reported using contraceptive methods mostly condom alone 747 or in combination with hormonal contraceptive 169 in multivariate analysis education level primary adjusted or aor 199 95 ci 105 to 376 secondary level and higher aor395 95 ci 203 to 767 who clinical stage stage ii aor07 95 ci 037 to 133 followup in private care facilities aor254 95 ci 122 to 529 and having a child aor251 95 ci 141 to 45 were associated with higher contraceptive use while marital status living in union aor045 95 ci 028 to 074 and who stages iii and iv aor047 95 ci 024 to 094 were associated with lower contraceptive use conclusion about threequarters of sexually active hivinfected 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 hivinfected women to use contraception in togo

introduction initiatives targeting geographical areas of relative deprivation have been a consistent feature of public policy within western countries in recent years since 1997 in particular a central feature of abis in the united kingdom has been an emphasis on coordinating service provision within and across sectors through various partnership arrangements these partnerships have generated considerable research interest which has revealed consistent difficulties in their development despite this attention the experience of abi partnerships remains undertheorised 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 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 timelimited 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 was a big lottery funded initiative targeted at 10 geographical areas of health disadvantage across the north west defined as such by initiative cothis paper was published in health 18 56179 3 ordinators according to levels of selfrated physical and mental health obesity rates fruit and vegetable consumption incidence of coronary heart disease and benefit claims the multisector providers coordinating tw intended to improve the health and wellbeing of residents via a programme of activities in targeted areas each programme was made up of 810 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 coordinator figure 1 shows the management structure for tw figure1 target wellbeing management structure this paper was published in health 18 56179 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 coordinated 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 coordinating service provision through abis the labour government of 19972010 argued that the health of people living in deprived areas could be improved through among other things better coordination of and improved access to services coordination of local public services was a core feature of many labourfunded initiatives including health action zones 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 coordinated expertise of a range of providers hazs for example were seen as this paper was published in health 18 56179 5 vehicles for innovating services by encouraging providers to work outside of their professional boundaries in the delivery of projects seeking to promote health although there have been fewer government funded initiatives under the current coalition government interest in local coordination of services has remained despite sustained policy interest research indicates that abi partnerships have not been implemented according to the expectations of policy makers and that coordinated working between providers within abis has been limited 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 or as dowling et al 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 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 and that such competition can exacerbate fear of outsiders among service providers 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 twoway traffic 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 coordinators at the regional or city level 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 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 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 furthermore the crosssectional study design of many abi evaluations has meant that health partnership processes are often depicted as linear and predictable asthana et al 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 and their influence on the development of partnerships have not been adequately accounted for thus far as sullivan et al 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 locallevel partnerships 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 longerterm 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 coordinated 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 elias 1991 service providers within an abi are interdependent with other local and national providers funders and policy makers and their capacity for coordinated 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 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 power is never absolute but always a question of relative balances for noone 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 argued that power balances within a figuration could be influenced by ones 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 observing caution that the establishedoutsider concept might dichotomise the experiences of different groups 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 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 persons place in a network of relations with others strongly influences herhis disposition tastes ambitions and expectations or what he described elsewhere as habitus 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 methodology a longitudinal qualitative case study design was used to examine relations between service providers within a single town targeted by tw this provided an opportunity to trace the links between particular events in order to generate theoretical generalisations about the social conditions that shape partnership development the study had a commitment to a grounded theory approach while also testing out a number of figurational ideas using them as sensitising concepts as outlined above to maintain a twoway relationship between inductive and deductive processes nontw coordinators 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 coordination 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 followup 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 audiorecorded and transcribed verbatim the data were managed in nvivo coding was carried out by the primary author but ongoing discussion with the secondary authors encouraged a greater degree of detachment from the data 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 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 which were used to capture the different ways in which particular ideas and issues emerged in the data 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 outlines findings tw projects within seatown were commissioned by representatives from the local strategic partnership 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 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 im a member of target wellbeing 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 described how her work with young people at a mental health organisation was shaped by her own low selfesteem 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 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 and from the point of view of coordinators seem ed to merge together 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 shortterm 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 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 coordinators which heightened the sense of competition between tw providers these targets were regarded by many tw providers as an important measure of success to the funders partly because of monitoring 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 organisations resident recruitment targets as the following quotation illustrates i just dont think were 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 therefore the deeplyrooted 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 intraorganisational 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 nontw providers and coordinators 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 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 nontw 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 didnt live here would i care in the same way or would it just be about the money local status was explicitly defined against outsider status which was sometimes associated with poor understanding of residents needs analysis indicated that outsider providers were perceived as posing a threat to the position of those based in seatown some local nontw providers for example expressed agitation that providers based outside of seatown had been chosen to deliver tw projects one outoftown 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 coordinators 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 dont just want anybody coming in and working with their users 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 nontw 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 weve never really been able to engage with one of the tw projects … another nontw provider will work longer with our users because of the working relationship weve got with them so… there are probably other organisations that we already work with referring residents to local providers with whom one already had an established relationship perpetuated a providers 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 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 ones 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 nontw providers 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 nontw providers in the town 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 nontw 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 wordofmouth endorsements from providers considered to be more local tw providers at an organisation with no history of working in the town asked a tw coordinator based at the pct to arrange meetings for them with health practitioners in the town one coordinator considered that these meetings provided legitimacy for tw providers and a sort of reference … to actually get recognised as something that was kosher 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 providers considered it important that other providers understood and valued their work and this could be achieved through wordofmouth endorsements the influence of wordofmouth processes can partly be explained by the perception among local providers that the voluntary and community sector in seatown was underdeveloped with few established networks between vcs providers prior to tw wordofmouth 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 wordofmouth 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 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 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 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 the findings from this research extend this analysis to show that competitive processes between providers are ongoing 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 coordinators led to consequences that coordinators despite their apparent position of authority could not control the networks in which providers and coordinators were embedded 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 showed how competition for funding between providers can exacerbate fear of outsider providers in communitybased initiatives this research provides an explanation for milbournes 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 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 that established and outsiders might be most helpfully used to understand degrees of establishment in a community and suggest that a providers 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 coordinator 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 coordinators are unable to control the unplanned outcomes that often emerge from competitive processes although abi coordinators 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 coordinator 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 shortterm areabased partnerships

areabased initiatives abis have formed an important part of public policy towards more socioeconomically deprived areas in many countries coordinating 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 undertheorised 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

to combat the sarscov2 viruss transmission global policies implemented restrictions that limited access to traditional funeral and mourning rituals families were unable to have contact with the deceaseds body coffins remained closed and attendance at ceremonies was restricted 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 metaanalysis indicated that throughout the covid19 pandemic the overall prevalence of grief symptoms and disorders among the bereaved was 451 and 464 respectively moreover a study by harrop et al found that amidst the pandemic there were reports of higher levels of complicated grief symptoms compared to prepandemic 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 recent studies have shown that the inability to engage in these rituals due to pandemic restrictions has had a profound impact on bereavement experiences prepandemic data suggest that dissatisfaction with funeral rituals and ceremonies is associated with a high risk for consequent depression posttraumatic stress andor prolonged grief disorder however burrell and selman emphasize that the benefits of postmortem rituals depend on the bereaved persons 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 covid19 pandemic flexibility in identifying alternative meaningful ways to honor the deceased becomes pivotal in the process of grief adjustment recent research highlights the importance of coping and psychological flexibility defined as the capacity to adjust emotional expression according to situational demands in adapting to the singular challenges posed by the covid19 pandemic in mental health 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 on the contrary bereaved individuals with pgd display a less expressive and flexible repertoire than bereaved individuals experiencing adjusted grief the psychological and behavioral flexibility to engage in alternative mourning rituals and ceremonies has proven to be a protective factor against the severity of grief anxiety and loneliness and was associated with more posttraumatic growth mourning rituals can be individual or collective individual rituals encompass creating something in order to express feelings 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 the use of meaningful objects act as transitional objects with the deceased 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 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 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 additionally the internet and social media provide new means of emotional expression and tribute to the deceased thus constituting a collectively constructed mourning ritual 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 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 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 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 however further investigation is required to fully understand the efficacy of these memorial practices in mitigating early symptoms of pgd especially during the covid19 pandemic hence the aim of the present study was to explore perceived limitations in funeral ceremonies and the moderating role of specific amr in the relationship between the perception of limitation in the 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 procedure this study is an exploratory study with a crosssectional 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 and of the grief unit in public hospitals across the country the sampling method was nonprobability snowball sampling ie 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 covid19 after march 16 2020 this study is part of a larger national project focused on the impact of bereavement on the sarscov2 pandemic this project was approved by the ethics committee of the administração regional de saúde centro and alentejo instruments sociodemographic and situational questionnaire this questionnaire was designed within the scope of this research to collect information about the sociodemographic characteristics of the participants and the characteristicscircumstances of the death perception of limitation in funeral ceremonies two items constructed within the scope of the study were used to assess the individuals 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 deceaseds wishes ie 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 ie 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 to assess the intensity of the grief responses in the grief process we selected the reduced version of the prolonged grief disorder assessment instrument this instrument focuses on the bereaved persons subjective perception of the frequency of symptoms associated with the mourning process djelantik et al statistically analysed the 13 items of the pg13 and highlighted 4 items that statistically identify risk indicators of prolonged grief answered on a scale of 1 to 5 the reduced version of this instrument was used due to the time postmortem may include less than 6 months the overall score was used in the present sample cronbachs alpha was 086 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 dispersion and distribution the analyses were conducted in spss first correlations were performed to the main variables of the study to explore the relationship between the variables the magnitude of the correlations was analyzed using pearsons coefficient using cohen criteria weak moderate and strong second to examine the moderating effect of the achievement of amr six moderation models were tested using the macro for spssprocess perceptions of limiting restrictions were entered as independent variables and the intensity of grief responses as dependent variable the moderator variables corresponded to the amr thus for each independent variable 3 moderations were tested the effects were analyzed using the bootstrapping procedure confidence intervals are considered significant if they do not include zero a significance level of 005 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 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 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 and the intensity of grief responses results suggested that the model proved to be nonsignificant explaining 427 of the variance of the bereavement response intensity results 332 p 002 r 2 004 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 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 and the intensity of grief responses the results suggested that the model proved to be nonsignificant explaining 33 of the variance in the results of the intensity of grief responses 254 p 06 r 2 003 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 and the intensity of grief responses the results suggested that the model proved to be significant and explained 883 of the variance of the results 720 p 000 r 2 09 the existence of a negative and significant interaction was observed between vi and using objects of the deceased person 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 deceaseds 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 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 and the intensity of grief responses the results suggested that the model proved to be significant and explains 961 of the variance of the results 790 p 000 r 2 010 from the analysis of table 4 it was observed the existence of a negative and significant interaction between and performing tribute on social media 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 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 and the intensity of grief responses the results suggested that the model proved to be significant and explained 882 of the variance of the results 719 p 000 r 2 009 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 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 model 6 considered as moderator the use or nonuse of the deceased persons objects in the association between the perceived limitation in implementing the wishes expressed by the deceased in relation to funeral ceremonies and the intensity of grief responses the results suggested that the model proved to be significant explaining 1048 of the variance in the results of the intensity of grief responses 871 p 000 r 2 010 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 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 deceaseds 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 deceaseds 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 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 deceaseds 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 lessened the strength of the relationship between perceived limitations in funeral ceremonies and the intensity of early prolonged grief disorder 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 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 engaging in amr demonstrates adaptability and resilience as it implies the ability to navigate challenging circumstances and find creative solutions to honor the deceased in consonance with contemporary research 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 however results show that distinct mourning rituals 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 deceaseds 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 deceaseds wishes social media and candle lighting rituals may serve as therapeutic outlets allowing mourners to connect with others and reduce the emotional distress 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 when individuals perceive limitations in fulfilling the deceaseds wishes the support received from social media connections can mitigate feelings of isolation and emotional distress 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 it can also facilitate the creation of virtual rituals and memorialization practices 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 in short when circumstances restraint fulfilling the deceaseds wishes social media provides an alternative channel for such expression involving emotional sharing continuing bonds community building and preserving the deceaseds 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 furthermore the act of lighting a candle engages the senses such as watching the flame which can be soothing and grounding 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 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 deceaseds 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 deceaseds objects hold personal significance and are tangibleconcrete reminders of the person who has passed away when individuals interact with these objects they can physically touch and hold something that was part of their loved ones 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 likewise the deceased may have articulated specific preferences regarding the utilization or preservation of particular objects using these objects in accordance with the deceaseds wishes may provide the bereaved with a sense that they are honoring the persons choices perpetuating their legacy and paying tribute to their life in summary the use of the deceaseds 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 clinical implications the clinical implications of our findings are multifaceted resonating with contemporary perspectives on grief and resilience it underscores the need for clinicians to acknowledge the diverse ways in which individuals grieve and recognize the therapeutic potential inherent in mourning rituals specifically findings from this study contribute to identifying the role of alternative mourning rituals in order to promote the bereaveds 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 covid19 pandemic clinicians should take into consideration the specific therapeutic functions of mourning rituals that better meet the bereaveds 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 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 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 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 data availability the dataset generated during andor analyzed during the current study are available from the corresponding author on reasonable request

amid the covid19 pandemic measures were enforced that constrained peoples 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 deceaseds 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

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 digitally driven communication fosters positive interactions and has multiple benefits but it can also bring about new challenges the emergence of online communication has been linked to the global rise in messages with sexual content today adolescents can explore their sexuality in new ways redefining and normalizing more recent types of intimate relationships such as sextingthe sharing of selfproduced sexual material through electronic means concerns about this phenomenon have grown and it has attracted considerable attention from researchers families teachers schools and the media this has occurred as a consequence of its potential negative impact and the effects it can have on adolescent wellbeing where sexual content is disseminated without consent or where teens feel peer or partner pressure to engage in sexting behaviors even teachers agree that sexting could cause classroom disruption 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 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 and passive sexting they also vary according to the content of the messages and the degree of sexual explicitness therefore the most restrictive definitions exclusively refer to sending sexually explicit pictures whereas the most comprehensive definitions also cover other types of behavior for example content dissemination 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 because sexting is an evolving concept that has become increasingly complicated 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 in a recent metaanalysis the average prevalence of sending sexual content was 148 receiving sexts was 274 forwarding a sext without consent was 120 and receiving a forwarded sext was 84 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 the need to address sexting the practice of sexting is characterized by its psychological social and behavioral consequences which can lead to ethical and sociomoral conflicts alongside other concerns about the privacy and protection of personal content results of a recent metaanalysis suggest that the exchange of sexual messages photographs and videos through technological devices is associated with sexual behavior and mental health issues especially in younger adolescents 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 however most studies indicate that these relationships are crosssectional 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 although the bulk of the research focuses solely on consented parties 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 a possible explanation is that sexual content can be spread quickly without consent reaching undesired recipients thus increasing its audience and affecting the victims reputation 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 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 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 in all cases a robust response to any sextingrelated behavior is highly recommended it is clear that the nonconsensual forwarding of content to third parties is a type of behavior that must be avoided and prevention strategies must be taught however young people also need to know how to act when this type of content is received how to send sexual content safely if this is indeed the intention and how to fend off any attempts at peer pressure thus this phenomenon is seen as a challenge for educational institutions and teaching professionals given that incidents brought about by sexting can have a negative impact at school although prevalence is higher outside of school walls sexting also occurs during school hours what is more sexting outside of this environment may also have an impact within the school context because this phenomenon has the power to influence the interpersonal relationship building process not to mention adolescent sexual development in general the classroom is an ideal environment for educating individuals on how best to use information and communications technology and more specifically prevent any negative consequences of sexting 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 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 research question despite the importance of preventing the potential negative consequences of sexting information on how to do this effectively remains scarce as such there is an obvious need to develop strategies based on scientific research findings 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 andor 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 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 and before selecting this strategy other attempts were made such as sexting and adolesc and 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 phasethe 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 journalpublication article title inclusion criteria and and exclusion criteria and the second phasefulltext eligibilitywas carried out on articles that only met the previous inclusion criteria checks were run to verify that they also met inclusion criterion and that they did not meet exclusion criterion in this case the whole publication was analyzed type of study area of study language country objective 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 572 of the articles were selected at random and codified equally and independently by a second assessor easily exceeding the 20 recommended minimum 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 the type of content and the degree of sexual explicitness the reliability level was high the percentage of agreement in the abstract screening phase was 913 reaching 921 in the fulltext eligibility phase disagreements were discussed and resolved in a consensual manner the articles selected were downloaded using the mendeley 1193 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 or the full text of the remaining articles was analyzed and 57 articles were excluded as they did not meet inclusion criteria or they met exclusion criteria 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 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 pre2009 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 522 of studies were conducted in north america 278 in europe 10 in oceania 44 across several continents 33 in south america 11 in africa and 11 in asia regarding subject area 396 of studies were conducted in the field of health 264 in psychology 209 in other social science disciplines 11 in education 88 in sociology and political sciences 44 in the field of communication and 33 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 392 of articles only refer to sending 23 generally define sexting as a sharing or exchange process 176 refer to sending and receiving and 162 identify the three behavior types sending receiving and forwarding the type of content behind these messages also varies specifically 297 of articles mention text messages pictures and videos 297 refer only to pictures 284 refer to text or picture messages 68 refer to sexual content in general but do not specify the content 22 refer to pictures or videos and 22 refer only to text messages lastly 487 include suggestive and explicit content 432 include only explicit content and 81 do not specify the type of sexual content behind the definition used in terms of the type of action recommended 77 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 857 of articles do propose specific strategies that can be effective when addressing this phenomenon but do not include any interventions and 66 present specific interventions to tackle sexting regarding the area of action where intervention is required 868 of articles indicate that intervention should be schoolled next 209 state that the family should intervene whereas the same percentage of articles report that family intervention must also involve the school similarly 198 state that action should be taken from a healthcare perspective 132 from a political perspective and 77 from across all areas in general a total of 55 of articles state that familyled involvement should be health based whereas the same percentage report how legal advice is required to lend a legal perspective on this phenomenon moreover 44 of articles call for the participation of law enforcement agencies and 22 note that collaboration from technology experts is also necessary 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 imageme a threelevel 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 governments 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 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 fulltime 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 cybergrooming sexting and skills for online interaction after the training students must create their own projects to raise awareness through google plus facebook the projects web site and through workshops and activities for their colleagues and teachers information about their evaluation was not reported imageme 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 projects target audience were chosen in an attempt to envisage how to address sexting effectively one of the results was the creation of a petpuppet used to get to know young people at schools clubs and other informal contexts videos were also made to raise young peoples 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 the threelevel strategic plan describes specific activities that schools can implement to tackle cyberbullying sexting and other risk behaviors on social media the threelevel 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 andor 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 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 preand 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 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 had not changed significantly most adolescents had exchanged sexually explicit pictures on their phones and the common behavioral narratives remained very similar 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 119 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 95 recommend not blaming and judging the victim or those who partake in this practice furthermore 95 of articles highlight the need to start taking action early on in school and in preadolescence and 71 recommend sexting assessment in schools to establish a baseline and to be able to promote strategies and actions based on the results obtained finally 119 of articles recommend evaluating the impact of these strategies postimplementation 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 however it has also become a new challenge that professionals working with children need to understand in order to deal with it effectively 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 phenomenons complexity thirdparty forwarding of sexual content also plays a highly significant role in understanding the consequences of sexting thus it is important to include all three types of sexting behaviors 1 3 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 and a specific subject area 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 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 the development of specific programs that address sexting is the notable line of action undertaking both proactive and reactive activities is crucial some examples are the use of case studies discussions educational campaigns lectures and workshops the creation of information resources a compilation of best practices real testimonies debates and crosscurricular classroom projects 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 it is important to teach them how to use technology appropriately this training should cover personal expectations about digital privacy control over personal data on the internet safe online behaviors and knowledge of rights and responsibilities when it comes to digital technology 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 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 longdistance relationship 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 introducing sexting into preventive programs that address other associated risksadopting an integrated approachis also recommended 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 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 nonconsensual sexual content 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 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 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 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 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 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 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 uptodate with the apps that adolescents use discuss sexuality in a professional way have the resources to deal with this reality know what sexting is and what drives adolescents to participate in it and be aware of the ensuing legal and moral obligations 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 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 nonconsensually and where aggressive attitudes are exhibited for example in cases where sexting is associated with bullying 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 the peer group risk factors for sexting also play an important role among adolescents during adolescence social status is particularly important and sexting offers an opportunity to become more popular it may be seen as a strategic move for adolescents to gain popularity among peers 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 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 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 peoples actual needs 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 implementing peer educationcoaching 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 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 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 furthermore sexting is characterized by the developmental stage of adolescents first romantic or sexual relationships 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 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 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 lastly evaluation plays a significant role when addressing sexting in order to understand the reality within the corresponding context and to promote evidencebased 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 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 evidencebased 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

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 thirdparty 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 eg 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

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 can through communication and social support enhance health outcomes 1 we analyzed the effects of social capital on womens 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 selfrated health 3 12item shortform health survey scores 4 symptoms of depression and anxiety 4 5 6 7 8 9 pregnancy complications 41011 oralhealthrelated quality of life 12 preterm birth 4811 13 14 15 16 17 18 19 20 21 22 and low birth weight 4132021 of these investigations those of selfrated health sf12 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 4811 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 sf12 was administered to pregnant women in berlin and social support was consequently found to have a positive influence on their scores 4 however this previous study was conducted across a limited geographic area and examined fewer than 1000 respondents thus analysis of largescale 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 childrens study 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 childrens health and the project is being conducted in 15 regional centers across japan as part of jecs researchers recruited expectant mothers from these areas between 2011 and 2014 of which approximately 100000 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 scores of the 8item shortform health survey 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 largescale 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 12627 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 healthcare 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 childrearing 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 during their first trimester and the second questionnaire 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 facetoface 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 mt1 includes question items concerning family characteristics disease tobacco use substance use working status working environment and various other topics moreover mt2 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 contain details regarding the newborn baby obstetric and delivery complications and other topics from mt1 we used the information regarding family characteristics selfreported history of disease and laborforce participation moreover from mt2 we used the pcs and mcs scores age experience of stressful events education history household income and level of social capital the presence of obstetric complications was identified using information from mt2 and dr0 m in dr0 m physicians reported the timing and diagnosis of obstetric complications if the diagnosis of an obstetric complication was recorded prior to the respondent completing mt2 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 sf8 pcs and mcs scores were calculated based on the respondents answers to the question items in mt2 which includes items assessing general health physical functioning rolephysical bodily pain vitality social functioning mental health and roleemotional 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 womens social capital as previous studies conceptualized we regarded the resources embodied by the individuals 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 31229 the mt2 questionnaire contained question items pertaining to individual communication and evaluation of trust in and support received from neighbors supplementary table 1 shows the question items related to social capital the contents of the questions concerning individual social capital are similar to those of the six questions from the social support questionnaire 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 are similar to the social cohesion and trust components of a questionnaire used in the project on human development in chicago neighborhoods 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 statistical analysis to estimate the causal influence of social capital on health we adopted average treatment effect estimation with an inverse probability weighting 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 nonrandomized treatment for respective individuals and we applied the method of the ate estimation the ipw estimator is useful to control the bias caused by nonrandomized 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 hisher 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 and the range of the probability is 0 to 1 this probability is individual is 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 3237 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 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 e i1 and e i2 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 3839 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 3840 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 4564 and 4913 respectively most participants were married 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 for questions a to c 1015 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 twosample ttest 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 laborforce participation mothers and fathers academic histories and household income for individual and neighborhood social capital the difference in the twosample 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 twosample ttest of social capital revealed a correlation between social capital and certain individual characteristics more specifically high individual social capital 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 moreover high neighborhood social capital 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 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 21 22 and 23 as performed in previous research 3840 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 moreover a positive impact of social capital on the pcs score was observed for neighborhood social capital for example the ates for question e were 050 and 090 for somewhat agree vs disagree and agree vs disagree respectively 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 further all ates relating to neighborhood social capital were positive and statistically significant 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 1016 moreover for questions c and d the largest differences caused by social capital were approximately 36 and 44 respectively the maximum effects of individual and neighborhood social capital were approximately 44 and 16 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 sf12 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 individual social capital and health outcomes individual social capital and grouplevel health outcomes grouplevel social capital and individual health outcomes and grouplevel social capital and health outcomes 1 our study can be categorized into designs 1 and 3 pcs and mcs scores individuallevel social capital and grouplevel 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 910 one such study which used the kessler 6item psychological distress scale 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 sf8 using the ipw estimator we consequently found that social capital has a degree of positive influence on mcs score this result implies that supplementary information supplementary information accompanies this paper at 1186s12884020031313 additional file 1 supplementary table 1 items that assess social capital additional file 2 supplementary table 21 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 competing interests the authors declare that they have no competing interests

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 largescale nationwide survey data methods we employed questionnaire survey data from 79210 respondents to the japan environment and childrens study and physical and mental component summary scores from the 8item shortform 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 nonrandomized 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 44 and 16 for individual and neighborhood social capital respectively the average treatment effects for the physical component summary score were negligible for both social capital types

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 facetoface 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 neourbanists 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 alkut 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 highend 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 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 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 decisionmaking 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 neighborhoods 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 tightknit 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 wellbeing 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 alkut 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 with an area of 2925 hectare about 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 redivided 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 31 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 and to support investment projects contributed to the growth and success of the project in order to increase the citizens 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 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 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 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 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 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 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 shannonweiner 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 ∞ 𝑛1 where pi proportion of individuals of types i and ln is the natural logarithm and s types richness the value of h ranges from to h whereas h 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 alkut 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 neighborhoods 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 andor 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

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 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 childrens 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 middleclass innercity 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 childrens outdoor play and institutionalized leisure research on families organization of daily life has often focused on the organization of time in sweden forsberg investigated parenthood and everyday organization in childcentered middleclass families focusing on negotiations over the balance of work leisure and family commitments between parents and children forsberg mostly focused on negotiations between parents 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 jurzcyk and lange 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 childrens wellbeing us 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 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 middleclass families had a much faster pace than those of workingclass families members of welloff families talked in terms of deadlines and the amount of wiggle room they had lareau also discussed differences between lowerand middleclass families in the balance between childrens time for informal play and for institutionalized leisure activities workingclass 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 middleclass children in addition their outdoor informal play led to children of different ages playing together for middleclass children time for informal play or hanging out in the neighborhood was more restricted in her study lareau found that middleclass 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 called whitecollar 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 middleclass parents and as an important part of their childrens general education a logic of childrearing lareau termed concerted cultivation middleclass parents are thus willing to spend their leisure time on different institutionalized leisure activities for each child engaging in cultures of busyness tillberg and lareau have shown that childrens 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 childrens 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 childrens leisure activities often take up for younger siblings almost taking hostage of their time the children in lareaus middleclass families also did not spend much time with their parents and siblings because every family member had his or her own timespace schedule even while at home middleclass 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 innercity neighborhood with cultural and commercial services near at hand often offers poor opportunities for childrens 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 limited access to good outdoor play areas and prohibitions against unsupervised play in the streets affects crucial aspects of childrens mental and physical health 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 according to karsten urban parents have several reasons for remaining in innercity 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 timeconsuming commutes from the suburbs another reason may be proximity to what they perceive as good schools to allow their children to attend a good school parents move to a home within that schools 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 information on which neighborhoods and schools are well regarded is usually gathered through parents social networks research focusing on childrens perspectives and experiences shows that not only parents but also childrens social networks play an important role 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 the densification of urban space together with more emphasis on institutionalized leisure is decreasing the time children spend unsupervised outdoors both in sweden and in other european contexts the ferrying of children from home to school to leisure activities results in what zeiher calls the insularization of childrens 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 such as the needs to eat and sleep 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 in a family the different members paths adjust to the familys common timetable and spaces forming what hägerstrand calls family bundles this implies interacting schedules and a conceptualization of the family as a relational system in addition the timespace 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 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 however this blurring of boundaries does not mean that clear temporal and spatial boundaries have ceased to exist in fact tillberg argues that the conviction that children should be engaged in institutionalized leisure activities has become such an important norm in todays society that such activities have become the dominating authority constraint in family daily life an effect of the increasingly institutionalized daily life of children 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 in our research however we view childhood as socially situated and children as social agents accordingly agency is an important concept in our research and we stress both childrens and parents agency when it comes to the organization and negotiation of time and space within the family childrens and parents agency in regard to the organization and negotiation of time is emphasized by the concept of doing time jurczyk and lange argue that an active doing of timesuch as creating family time quality time or own timeis 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 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 and lareau do discuss space to some extent 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 parents and childrens agency and living conditions are not only intimately connected with timespace variations but their agency may also differ in different domains according to jurczyk and lange for example children often exercise relatively strong agency in commercial domains 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 timespace organization of daily life could be investigated with different research methods while planning research on the timespace organization of families in neighborhoods with different class and geographical characteristics we decided to do a pilot study of one family in particulartwo parents a son and a daughterin a welloff innercity neighborhood in uppsala sweden this yielded not only valuable methodological insights but also valuable data on the timespace structures that frame this familys everyday life in addition the study suggested important concepts concerning parents and childrens agency in negotiating the family members shared and individual time and space the study had a qualitative mixedmethod 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 timespace diaries across a sevenday 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 familys decisions were negotiated the setting the centrally located uppermiddleclass district of kungsängen in uppsala is a new residential neighborhood consisting of fiveand sixstory 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 fiveroom 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 halfhour drive from uppsala the neighborhood consists of predominantly welloff swedish inhabitants a sushi bar and a posh clothing boutique reflect the neighborhoods economic level 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 and the parking areas were built underground 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 however kungsängen was clearly not planned with children in mind there is a lack of child services such as daycare 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 childfriendly environment indoors the familys 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 childrenanne age 12 and tom age 9and their parents hilda and oskar each 37organize time and space in the domains of childrens outdoor play and institutionalized leisure we also relate this timespace 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 familys apartment lifestyle and kungsängens structure and innercity 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 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 childrens 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 singlefamily 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 uppsalas limited stock of such housing a singlefamily 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 innercity 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 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 childrens 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 in line with other research the parents school preference was based on what they had heard from friends and colleagues at work specifically the mothers 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 childrens timespace conditions and practices and consequently their wellbeing 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 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 childrens physical activity a great deal yet the outdoor environment of innercity 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 matchesa 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 annes physical activity the familys middleclass status allows it to conform to the timespace conditions required by this institutionalized activity 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 timespace diaries tom played outside in the neighborhood 280 minutes and anne 60 minutes during the studys 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 computers860 minutesthan 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 annes 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 brothers 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 workbiking walking or standing and watching annes soccer matches apartment living seems to be negatively affecting the parents physical activity levels more than the childrens creating play space in a place not for play when playing outdoors tom exhibits an intense and creative use of space together with his friendsmostly boys of different ages but also anne and sometimes a friend of hersthey 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 fencedoff construction site just behind the small green where a neighbor has erected a mini soccer goal 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 show children construct a sense of home and family by moving inandoutandaround the home however when living in a fourthfloor apartment going in and out is not as easy as in a singlefamily 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 apartmentand so puts it in the elevator to transport it up while using the buildings intercom to tell his parents upstairs that the ball is on its way for them to collect 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 toms 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 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 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 codedlock entrance to a building with a courtyard institutionalized leisure annes soccer activity consumes a lot of her leisure time both during the week and on weekends 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 childrens 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 annes soccer and like to go to her matches to cheer on the sidelines oskar describes himself as a leisureclub 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 annes 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 annes soccer is very timeconsuming 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 daughters anne herself does not speak of being stressed by or tired of her soccer activity unlike children in lareaus study having one leisure activity and not several seems to allow anne enough time and space for recuperation 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 middleclass practices and in this respect the family is typically middleclass so far tom has refused to take part in any organized leisure activities or afterschool clubs resisting institutionalization outside school he manages to retain quite a bit of autonomous time and space not attending an afterschool 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 langes discussion of the importance for children in midchildhood 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 timespace constraint looking at the familys timespace organization from a timegeographical perspective it becomes clear that the members paths on the weekend are bounded by annes soccer activity which consumes a good deal of the familys common time as well as her parents and her little brothers leisure while gathering the family at institutionalized leisure spaces annes leisure activity is also an important authority constraint upon the family oskar drives her to practice twice during the work week and does not stay to watch but instead makes the 20minute 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 inbetween 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 he cannot stay home alone and it is not always possible to stay at a friends house for the whole day sometimes hilda stays home for toms sake oskar however does not attending annes matches whenever possible this indicates that her soccer activity is primarily oskars parental responsibility soccer parents annes 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 annes 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 annes 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 childrens activity as themselves thus annes 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 annes soccer is a disadvantage he misses out on social activities while those of his sister and his parents increase adjusting work hours for childrens activities tillberg has shown that parents adjust their work hours to childrens leisure activities hilda and oskar describe their family as one with common routines and members who like to be at home and in each others company they portray themselves as familyoriented 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 afterschool hours hilda has adjusted her work hours and leisure time to family life she works parttime in order to see to the children eating breakfast packing bags and getting off to school then arrives home again around four pm oskar works fulltime 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 420 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 oskars timespace 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 homeoriented 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 wellbeing of children and youth in this article we have discussed results from a case study of how a middleclass family in a childunfriendly innercity 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 timespatial 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 childfriendly 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 middleclass status allows them to reach beyond the neighborhood for physical activity and institutionalized leisure as a result their daughter annes 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 sisters 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 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 daughters 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 regarding institutionalized leisure as an important part of childrens general education they justify toms disengagement by leaning on the discourse of physical health so far tom has been able to resist socialization into the middleclass practice of institutionalized leisure by being physically very active and creative while outdoors by also refusing institutionalization in afterschool clubs he simultaneously creates autonomous time for himself indoors it is noteworthy that this familys interest in their daughters leisure activity has not led them to engage in a culture of busyness although annes soccer activity is the hub of the familys timespace organization they manage to maintain a homeoriented 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 lareaus families did this reflects the importance of understanding middleclass practices not as uniform but rather as diverse depending on family and cultural contexts on the other hand if and when toms parents persuade him to join the soccer club this familys family time at home will increasingly be converted into family time at the soccer club danielle van der burgt phd 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 childrens and youths everyday mobility and wellbeing 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 indepth interviews and maps but also quantitative methods such as surveys and timespace diaries her current research projects focus on urban families timespace 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 phd in education is a senior lecturer in child and youth studies department of education uppsala university sweden her research field is childrens everyday lives and identity within families schools and neighborhoods she takes a childhood geographical approach focusing on the importance of place in childrens daily identity work along with childrens 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 childrens mobility and identity work in her research together with traditional ethnographical research methods she also works with childrens own documentations such as narratives photos maps etc she is part of the research group studies in childhood learning and identities as interactional practices

the new urbanism trend has led to more swedish middleclass families living in apartments in cities with proximity to attractive schools and services but poor opportunities for outdoor play viewing families and childrens agency and living conditions as intimately connected with timespace 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 mixedmethod approach we find that within one family there are several ways of handling this initially a way of promoting physical health the daughters soccer activity has become the hub of the familys timespace 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 childunfriendly 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 the use of skillmix 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 skillmix 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 910 subsequent legislative changes permitted dualtrained dental hygienists and therapists being younger or 1024 and having a perceived need for treatment or 149 fewer were willing to allow a therapist to restore a childs tooth with acceptability predicted by being younger or 1026 those receiving some private treatment were less likely to report acceptability of simple restorative treatment for themselves or 061 or for children or 054 482 of participants expected to pay less for treatment provided by therapists with acceptability of equal costs predicted by the participant being male or 181 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 skillmix in dentistry and their roles this is particularly important now given recent recommendations to increase the use of skillmix 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 services social acceptability and legitimacy be considered as a key part of service quality assessment 2223 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 skillmix 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 skillmix 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 using structured interviews on a representative quota sample of uk adults 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 1000 was selected to provide a 95 confi dence interval that a population proportion of 15 would provide estimates ± 22 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 2728 areas of inquiry included the following explanatory variables participants age sex socioeconomic 29 and educational status dental attendance patterns and access to care perceived treatment need and levels of dental anxiety 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 facetoface 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 by random dialling in postcodes to obtain a quota sample that was representative of the offi ce for national statistics mid2005 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 1000 uk adults 6937 unique telephone numbers were called of the numbers called 1704 were called back as they were either busy or engaged or the participant requested the interview take place at a different time only 91 calls resulted in no contact being made of those contacted 5828 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 692 that they could administer local anaesthetic no participant correctly predicted all the permitted duties of dental therapists having received information on the role of therapists and their training 613 of participants would be happy to receive simple restorative treatment but 204 would not be happy to receive any treatment from them overall participants regarded dental therapists providing care for children as less acceptable fewer participants regarded dental therapists providing fi llings thirtynine percent of participants expected to pay the same for treatment provided by dental therapists but 482 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 childs 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 for care provided by a therapist although levels of acceptability varied in different socioeconomic groups chisquare 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 2728 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 however the proportion of participants not willing to have any treatment provided by a therapist differed younger participants were happier to receive treatment from dental therapists and for them to treat a child the odds ratios indicate that approximately 26 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 skillmix 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 skillmix in older age groups must be a consideration when delegating care the earlier qualitative study had suggested that lower levels of acceptability of skillmix 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 skillmix 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 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 of the possible predictors of the acceptability of providing this treatment were used to preselect variables for forward stepwise logistic regression models all variables with a relationship of p 02 were entered into the models all analyses were performed using spss version 15 and alpha level was set to 005 ethical approval for the study was granted by the university of sheffi eld uk results of the 1000 participants 486 were male their mean age was 470 years and 287 had a child under 16 years of age seventyone percent attended regularly for checkups and 283 perceived they had treatment need of those reporting diffi culty with access to a dentist 704 cited a lack of local availability of a national health service dentist as the cause overall 104 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 no other variable predicted awareness of those that had heard of a therapist only 38 thought that research 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 skillmix 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 2728 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 childs deciduous tooth given that dental therapists are often employed to treat children and adolescents in the uk and elsewhere 4041 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 4243 if skillmix 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 skillmix 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 skillmix 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 skillmix 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 twotier 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 2223 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 skillmix in terms of increasing effi ciency and access while maintaining its effectiveness and thus improving the services quality overall 23 our qualitative data suggested that once the rationale for skillmix 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 skillmix 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 266 of participants as having perceived need for treatment which is similar to the proportion reporting perceived need in a recent largescale postal survey of adults 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 2223 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 5253 and mixedmethod approaches have been recommended 5455 given the increasing proportion of provision of dental services in the private sector models of how skillmix 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 skillmix 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

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 skillmix 13 14 15 although there is still ignorance of dental team members roles 1415 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

health promotion interventions requires collaboration with communities 123 thus collaboration was formed between health behaviour scientists and cald community leaders advocates and bicultural workers to discuss the challenges faced by cald communities in communicating covid19 health messages and to develop evidencebased strategies to inform and empower cald communities to adapt their behaviours in line with covid19 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 wellestablished method in health research under the banner of participatory research 3 using methods of participatory research this paper has been coproduced by academics and cald community leaders from end to end from data collection through to the coproduction 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 semistructured dialogues were held online via zoom teleconference in july 2020 with various combinations of cald community leaders focusing on the following three questions australia documented its first confirmed case of coronavirus disease 2019 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 covid19 in july 2020 and restrictions were reintroduced the experiences during the second wave highlighted the need to engage culturally and linguistically diverse communities widespread outbreaks of covid19 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 andor 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 evidencebased 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 evidenceinformed 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 covid19 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 healthrelated 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 56 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 community leaders generated a range of recommendations for example about how covid19 messages could be disseminated more effectively and these recommendations were sorted by aw in an initial map 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 this mapping process was repeated with community leaders responses regarding how messages could be designed more effectively and how trust could be built between communities and government 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 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 covid19 • what needs to happen to make sure that messages effectively reach diverse communities given that the covid19 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 audiorecorded dialogues transcripts of the dialogues were analysed by aw and hs using inductive interpretivist qualitative methods to identify key themes 4 this groundedtheory 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 coauthors for further inputcomment 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 covid19 health messages challenges faced by cald communities while cald community leaders commended the efforts of the federal and state governments to combat covid19 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 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 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 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 solutionfocused 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 covid19 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 audiences 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 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 910 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 1213 for example the wechat platform plays an important role in disseminating covid19 information to the chinese community in australia providing uptodate 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 covid19 pandemic 14 care should be taken to ensure that extra efforts to reach and support communities that are disproportionately affected by covid19 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 covid19 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 covid19 pandemic peer review and provenance externally peer reviewed not commissioned competing interests none declared

objective to consider the challenges of communicating covid19 directives to culturally and linguistically diverse cald communities in australia and present evidencebased solutions to influence policy and practice on promoting relevant health behaviours to advance participatory research methodologies for health behaviour changewe present a case study of a participatory research collaboration between cald community leaders and health behaviour change scientists during the covid19 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 semistructured dialogues with small

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 womens human rights affecting them as regards quality of life and health it is conceptualized by the convention of belém do pará 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 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 andor partners male domination and sexual division of unequal work 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 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 another aspect that contributes to the nonconfrontation 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 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 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 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 exploratorydescriptive 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 the theory of social representations has been chosen as a theoreticalmethodological reference this reference makes it possible to make something unfamiliar or even the nonfamiliarity and to this end it uses two mechanisms called projective techniques anchorage and objectification which act on the basis of memory the study was developed with elderly women living in rural areas linked to the rural family health strategy 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 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 and semistructured 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 thoughts and rev gaúcha enferm 201738e68209 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 semistructured 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 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 semistructured 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 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 semistructured 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 andor companions were sometimes present at the womens 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 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 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 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 the 4 th moment provides for the systematization of information grouping the main themes into figurative and symbolic nuclei 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 semistructured interviews have been submitted to the content analysis proposed by minayo which is divided into three stages preanalysis exploration of the material and treatment of the results obtained and its interpretation regarding the preanalysis 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 semistructured 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 201738e68209 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 textmark 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 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 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 with the protocol no 17148813000005346 therefore all the recommendations of the resolution no 46612 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 6883 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 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 the discussions obtained through the analysis of the empirical material collected during the workshop and the semistructured interviews have been grouped into three categories violence anchored in extreme acts of corporal aggression 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 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 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 there are many who also beat the woman we watch on television 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 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 in this sense a study has identified that women living in rev gaúcha enferm 201738e68209 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 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 violence is rape and death this is the worst thing because either you surrender or give your body or you are dead it shows on the television those women full of bruises because the husband had hit them 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 these data think about the nonrecognition 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 malefemale 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 these 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 in the past women had nothing there was no retirement they had no job if the husband said im 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 over the years the woman began to take over she no longer admits being lowered by men 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 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 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 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 201738e68209 head of the house but the rural woman is seen from the perspective of subordination obedience and service 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 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 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 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 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 the neighbors were generally all the same they were in charge of women and they obeyed this is also violence 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 situations of physical psychological or sexual violence against their mothers 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 i studied until the middle of the year of the third grade thenmy father took me to work in the field because at that time the parents did not offer education oh i never went to class my father never wanted me to 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 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 malefemale 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 rev gaúcha enferm 201738e68209 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 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 in this direction by not recognizing the doubletriple 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 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 andor 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 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 induced 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 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 healthillness 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

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 representationsit 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 semistructured 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 workit was revealed the invisibility of violence against elderly women in the rural context where the male figure overlaps with the female

introduction printtv media have often been blamed for the widespread perception in anglosaxon countries that benefit claimants are not deserving in the uk longstanding concerns over newspapers were recently revived amidst a surge in both negative newspaper coverage and reality television in the us claimants have long been represented as disproportionately black and undeserving which has been causally related to harsh attitudes 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 weve got a neighbour who does it indeed in briant et als study every respondent claimed to have firsthand knowledge of fraudulent claims while in golding and middleton twice as many justified fraud perceptions via personal observation than media stories moreover when scholars study public conversations about social issues indepth they find a clear hierarchy with personal experiences and anecdotes at the top and media stories and statistical information at the bottom if most people know undeserving claimants and these perceptions are trusted more than the media then the medias role may have been overstated 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 mediainfluenced frames we use to make sense of the world surprisingly given welldeveloped 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 workingage 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 mediastyle frames can cause people to respond differently to hypothetical contact with a vignette claimant to test if perceptions of claimants in everyday life match my hypotheses and to test if perceptions vary within the different discursive contexts of the uk vs norway 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 3 suggestive evidence supports this attitudes to claimants are more hostile among those who consume more negative media sources however establishing causality through these crosssectional studies is difficult given that people choose their media sources based on preexisting needsbeliefs 2 framing theory suggests that media framesthat is the way that media representations organise the many pieces of information relating to an issue 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 these permit stronger causal inference and mostly show that frames impact somebut not alloutcomes other methodologies also show mixed results eg convincing natural experiments show both significant and null effects nevertheless the overall balance suggests that negative frames are likely to negatively impact attitudes despite this considerable evidence on benefits attitudesmedia links there is almost no evidence that has looked at the connection between media coverage and peoples direct experiences 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 1922s 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 this assumption is explicit within some studies on benefits for example gilens argues that if personal experience does not explain the perceived racial makeup 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 peoples experiences similarly hopkins has convincingly argued that the combination of high local levels of immigration and a politicizing agent affects peoples attitudes yet while qualitative studies show how people countersupport media stories about welfare with personal experiences 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 and that media representations influence such stereotypes 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 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 experiencesbut 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 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 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 in the case of known welfare claimants ambiguity will tend to be greater for less wellknown acquaintances vs close friends i hypothesise h2 media frames primarily influence judgements of peripheral network members where ambiguity is greater with littleno effect on judgements of core network members while this echoes various strands of previous work the hypothesis itself is novel for example intergroup contact positively influences attitudes and more specifically on welfare those who know service usersgreater policy proximitywill be more positive towards services 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 i hypothesise that h3 judgements of known welfare claimants will be more positive in norway particularly for peripheral network members we must also bear in mind wider crossnational differences in attitudes and policy but there is no reason to think that these wider differences will lead to crossnational 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 workingage benefits 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 usually explained by lower average levels of control and higher levels of need however this evidence is often misinterpreted it shows that some disabled claimantsparadigmatic genuine cases evoked by terms like sick and disabled people 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 we can also see disabled people being differentially judged in eg political debates and everyday life 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 eg pain or mental illhealth moreover disabilities are often fluctuating which makes even those outward signs of disability on one day an unreliable guide to capacities on another 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 mediainfluenced stereotypes to influence judgements disability benefits are also a good test for h2 qualitative studies show that disabled peoples core network tends to support their accounts with scepticism usually reserved for more peripheral relationships notwithstanding that people are occasionally judgemental about close friendsfamily 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 purposecollected survey of nearly 4000 people in the uknorway study 1 tests if an experimentallyassigned newspaperstyle story influences judgements of a specific vignette claimant study 2 examines perceptions of nongenuine disability claims in everyday life testing how these vary according to media use and relationship type study 3 also examines perceptions of nongenuine disability claims in everyday life but now testing differences across countries the studies complement one anothers strengthsweaknesses 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 authors institution and replication codedata are publicly available 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 newspaperstyle 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 nondisabled claimants framing experiments allow strong causal inferences and have been widely used to study the impact of the media on attitudes data the experiment was embedded within a survey of 3836 people in the uk and norway using yougovs optin 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 the diversity of this sample is a strength compared to the student samples used in most previous welfare framing experiments with rare exceptions i conducted the framing experiment in both countries because they vary considerably in welfare discourses if we find similar effects in both then this supports the generalisability of my findings to other highincome countries procedures and measures our experiment uses a sample newspaper story that had previously been developed by ford and collaborators based on stories in uk newspapers the story is shown in figure 1 below it was seen by a random half of respondents but not others 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 nondisabled unemployed people who i hypothesised would not be affected by the disability benefits cheat framing each disabled claimant vignette contained eight experimentallyvaried dimensions while each unemployment vignette contained six dimensions i obtained 8605 disability vignette judgements and 2468 unemployment vignette judgements from 3836 people in febmay 2017 respondents were then asked whether each vignette deserves to receive support from the government while heshe is out of work giving answers on a 010 scale to test h1 i examined whether those in the fraud frame group judged the disability 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 i do not weight the data as this can increase bias in survey experiments nor do i include control variables as this is unnecessary and may decrease power in sensitivity analyses however i test if the results are robust to the inclusion of weights and sociodemographic controls 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 table 2 also shows that this effect is found in both the uk and norway despite differing welfarewider 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 nondisabled unemployed claimants 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 this confirms that the impact of the disability benefits cheat story is specific to hypothetical contact with disabled benefit claimants in further sensitivity analyses 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 £158000 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 antifraud 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 controlsweights or exclude those failing attention checks overall i find clear support for h1 although the effect is moderately small however it would be surprising to see a larger effect the size of effect is not dissimilarand is more consistent across measuressensitivity analysesto previous studies that have been interpreted as showing evidence of framing effects moreover the newspaperstyle story is muted in tone and makes no attempt to generalise andy green to claimants in general 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 realworld effects and i therefore turn to examining realworld effects directly study 2 reallife 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 temporalother barriers between frame and judgement to complement this study 2 examines how peoples realworld 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 but not core network members because of the greater amount of ambiguity when judging peripheral network members data and measures of realworld deservingness judgements we use the same yougov survey used in study 1 but here focus only on the uk for each of four types of social relationship i asked respondents • if they personally knew anyone with that relationship that they think has probably claimed disability benefits in the past year • if they knew any claimants with that relationship that they thought are not genuinely sick or disabled table 3 shows that nearly half of uknorway respondents reported knowing a disability benefit claimant per semost commonly close family or close friends and to a lesser extent distant family and neighbours yet when looking at nongenuineness people were more likely to know a nongenuine neighbour than a nongenuine close family member this is similar to recent findings in the us to test h2 we need a fair comparison of the prevalence of nongenuineness for different relationship types which takes account of the potentially different size of each group our outcome variable is therefore reports of knowing nongenuine 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 nongenuine than those in peripheral relationships measures of media use to measure media framing of benefit claimants i use a handcoded content analysis of a 20 sample of all uk newspaper articles on benefits 19952011 kindly shared by declan gaffney 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 and have therefore been the • fraud • shouldnt be claiming • never workedhasnt worked for very long time • large families • bad parentingantisocial 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 note that this is a measure of general newspaper negativity to welfare rather than the disabilityspecific negativity of the benefits cheat newspaper story in study 1 the gaffney measure reflects a decadelong average several years prior to my survey i therefore validate gaffneys measure in the presentday 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 19952011 correlates reassuringly strongly with 2017 reports of disability fraud articles analytical approach we regressed selfreported contact with a nongenuine claimant on newspaper negativity alongside sociodemographic control variables using standard logit models allowing covariates to have different effects for each type of interpersonal contact note that i have 04 observations per person depending on whether they reported knowing claimants within each relationship type and i use clusterrobust standard errors to account for this clustering within individuals to avoid possible misinterpretations all results are presented as average marginal effects results h2 predicted that those who read negative newspapers would perceive greater nongenuineness among neighbours but not among close familyfriends 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 in further analyses i also control for social trust and political ideology these still show strong support for h2 only slightly attenuated from my main results these control variables enable us to compare the judgements of readers of different newspapers who are otherwise identical but i should stress that this is crosssectional observational research and it is possible that there is both unobserved confounding or reverse causality this reflects the different tradeoffs of study 1 and study 2 the latter enhances ecological validity at the expense of confident causal inference study 3 comparing reallife 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 this uses the same yougov data and reallife judgements as study 2 again i focus on perceived nongenuineness only among respondents that report knowing a claimant of that type per se our analytical approach here is simple i regress perceptions of nongenuine claimants on respondents country using logit models with weights but no controls as before i use clusterrobust 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 also against expectations norwegians perceived more nongenuineness among close family and friends again shown in figure 3 there is some evidence that the difference between perceptions of close familyfriends vs neighbours was slightly stronger in the uk than norway 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 yet this does not necessarily mean that the more positive public discourse in norway has no impact on perceptions of known disability benefit claimants 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 nongenuine claimant of that type this was more common in the uk and as these cases of perceived nongenuineness are excluded from my main analysis this makes crossnational 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 if i therefore adopt a simpler outcome measurereported nongenuineness per sethen i find that norwegians were only slightly more likely than britons to know a nongenuine neighbour but much more likely than britons to know a genuine neighbour this provides some support for h3 but i must stress this is a posthoc exploratory analysis rather than my initial approach secondly at least 23 times as many people claim disability benefits in norway compared to the uk in my survey 291 of britons vs 615 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 this will ceteris paribus inflate the rate of perceived nongenuineness in norway vs the uk this may explain why i see greater levels of perceived nongenuineness in norway for all relationship types third differences in severity are unlikely to be the full explanation because the meaning of nongenuine appears to differ between the two countries to explore this i asked respondents think of the nongenuine 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 results for codeable responses are shown in table 5 showing three summary codes • 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 specific tasks they have been observed doing lying or the claimant admitting fraud being well • lazybad attitude the claimant was believed to be lazy or not trying hard enough to find work in norway this occasionally included references to people being young with the implication that efforts should be greater at their age • could work with supportadaptations the claimant was believed to be capable of doing some work or comments that they could be working without attaching any blame this shows a strikingly different pattern of justifications in the two countries in the uk accusations of nongenuineness were primarily because people were thought to be faking it or exaggeratingover threequarters of justifications were on the grounds that the person was not as sickdisabled as they claimed to be while this was still relatively common in norway it was much less dominant than in the uk instead norwegians were much more likely to justify their perceptions of nongenuineness on the grounds that the person was lazy or that despite their genuine sicknessdisability they still had the ability to work i revise the theory in the light of these findings in the concluding section in the meantime the evidence does not provide clear support foragainst h3 conclusions to the extent that welfare benefit claimants are seen as undeserving in the usuk it is often argued that the media are partly to blame yet this is seemingly inconsistent with the way usuk 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 mediadriven stereotypes may therefore play a role i focus on disability benefits which are not only the most commonlyclaimed workingage 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 uknorway survey of nearly 4000 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 nongenuine 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 nongenuine 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 nongenuine disability claims in real life but focused on a comparison between the uk vs norway contra h3 i did not find that britons were more likely to judge neighbours to be nongenuine 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 these studies are complementary survey experiments allow confident causal inferences but are weakly generalisable whereas reallife 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 optin panels have been widely used in academic research 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 posthoc analyses above suggest that the theory needs to be revised welfare state institutions not only shape media framings but also the makeup of benefit claimants the lower threshold for disability benefits in norway means that claimants are fundamentally different groups of people in norway vs the uk there are two plausible explanations here more simplistically media discourses in norway are more generous but are counterbalanced by the lower average severity of disability but a more complex interpretation is that the norwegian system is underpinned by 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 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 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 but also qualitatively studying daytoday 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 while being sensitive to the many factors that influence media reporting implications our findings deepen the existing challenge for those seeking public support for more generous benefits policies such campaigners in anglosaxon 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 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 finally we should note that past radical reforms did not require a golden age of prowelfare attitudes 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 mediafuelled stereotypes political discourses and institutional design 2 other mechanisms have been extensively explored in the wider media effects literature including agendasetting and priming however these are rarely discussed in the benefits literature 3 while the original formulation refers to television in general many cultivation researchersincluding those studying benefits have focused on particular sources 4 interestingly while hedegaard finds a positive impact of core network contacts on welfare attitudes gelman and margalit find null effects found for coreperipheral 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 webview 6 some people reported knowing a nongenuine claimant when they had not initially reported knowing a claimant of that type this was least common among close family and most common for neighbours this reflects two types of reporting errors a response error and memory errors

the media are often blamed for widespread perceptions that welfare benefit claimants are undeserving in anglosaxon 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 purposecollected survey in the uk and norway n 3836 in study 1 i find strong evidence that a randomlyassigned benefits cheat story leads respondents to interpret a hypothetical disability claimant as less deserving study 2 examines peoples judgements in everyday life finding that readers of more negative newspapers in the uk are much more likely to judge neighbours as nongenuinebut 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 nongenuine despite more negative welfare discourses partly because of different conceptions of what nongenuineness means in the two countries

introduction entrepreneurial dynamics is often associated with identifying opportunities and discovering and developing new business ventures as reported by several previous studies 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 meanwhile the term entrepreneurship refers to a method that provides solutions to various social issues to create economic social and environmental values in general entrepreneurial dynamics and typology… 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 serviceproviding entrepreneurs in this discussion has been limited 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 in addition the role of entrepreneurs as a contributor to rural development is a lessdiscussed area of research prior research by korsgaard et al 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 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 risktaking 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 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 the relationship between the role of entrepreneurs and village development in previous research was only discussed in a partial aspect entrepreneurs serve as a mechanism for creating development in rural areas characterized by organization elaborating further moore and westley described entrepreneurship as individual activities whereas korber mcnaughton defined entrepreneurs as having tough characters in addition other studies unveiled that entrepreneurs played complementary roles in strategies for building coalitions designing decisionmaking forums and management as well as having special abilities or entrepreneurial competencies moreover entrepreneurship relates to the capability of mobilizing ideas resources and support from external sources for the benefit of the rural community and having a profound impact driving and rural development research transformation and contributing to the sustainable development of rural areas considering the direction of development of rural destinations and engaging with the social system furthermore both entrepreneurs and entrepreneurship affect social change social innovation and dynamics of change sustainable change contains hope for the availability of economic social political and environmental resources for future generations 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 must be interlinked thereby strengthening rural entrepreneurs in their respective interests following the theory cited by cochran 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 chochrans 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 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 qualitative research is characterized by several points immature concept due to the lack of theory and previous research the idea based on the existing theory can be inaccurate imprecise incorrect or biased there is a need to understand interpret predict and describe phenomena and develop theory and the nature of the phenomenon may not correspond to a quantitative measure 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 and a community with a unique diversity of activities in managing local natural resources the selected locations comprised agricultural industry agritourism and entrepreneurial dynamics and typology… traditional area 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 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 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 indepth interviews and forum group discussions 1 various phenomena problems and needs of business actors and any changes in each research location were observed 2 indepth interviews were focused on critical informants including people who knew the history of the development of landcultivated 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 condensing data presenting data and drawing conclusions and verification data condensation refers to selecting focusing simplifying abstracting and transforming data figure 1 illustrates the interactive model figure 1 interactive model by miles huberman and saldana 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 drawingverifying entrepreneurial dynamics and typology… 2 the typology of entrepreneurs is considered capable of utilizing all or at least three assets typology of entrepreneurs with social economic and political assets and an entrepreneurial spirit typology of entrepreneurs with social economic and political assets typology of entrepreneurs with social and economic assets and 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 as described in table 3 table 3 various aspects of rural entrepreneurship in various periods 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 to the villagelevel implementation per individual entrepreneur development overcomes poverty powerlessness and inequality 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 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 complexity handling scale and higher dependence on communication allow the development of rural local potential to be hampered 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 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 for example the phenomenon of tourist villages artsculture 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 human resources infrastructure development and projected environmental conditions for village and interregional development programs 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 multidisciplines to identify control and transform opportunities into sustainable entrepreneurship 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 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 communitys social cultural and economic conditions to become the integrity of the nations progress the process is characterized by essential elements such as community participation to improve their lives based on their strengths and abilities and 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 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 through development communication between elite governments as policymakers and the rural entrepreneurial dynamics and typology… community as the object of development therefore the results of case studies from the three villages unveiled variations in development communication between entrepreneurial drivers and each actors role forming a typology for each village based on the performed business as displayed in table 4 table 4 demonstrates that the three villages 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 peoples 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 nonagricultural sectors evidenced through the existence of various occupations such as tour guides for bukit jabal and lembang gunung sari 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 moreover one of the business actors in kucur village had developed digital marketingbased marketing of agricultural products which could reduce the high margins of intermediaries to farmers likewise the mandiri tani republic successfully conducted experiments on processing coffee into coffee powder and marketed it offline and online agriculture 40 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 providing future opportunities for farmers in these agricultural industryrelated efforts the people of kucur village understood the strategies of digitalbased entrepreneurial sustainability agritourism gubugklakah village with its beautiful landscape and closeness to the bromo tenggersemeru national park 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 villages roads in addition a multifunction forest area could serve as a tourism forest providing occupations for the local community entrepreneurship developed in this village was considered tourismbased 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 entrepreneurial dynamics and typology… 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 nonagricultural sectors entrepreneurship in the three villages stemmed from the communitys ability to navigate opportunities and adapt them to each villages potential thus village potential development was performed with a commercial orientation to boost the local communitys living standard and contribute to village development the variety of entrepreneurship in the three villages was inseparable from the actors 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 villages 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 typology of rural entrepreneurs 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 sociocultural 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 through the identification of values and social problems adapted to local resources the details of the actors from the three villages are as follows 1 social politics village government political elite 2 economy head of bumdes chair of village unit cooperative chair of lmdh chair of ladesta chairs of farmer groups and farmer group associations 3 social relations business actors 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 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 chochrans theory encompass entrepreneurs as a personality of community capital implying that an entrepreneur is part of society that reflects ones skills style and motives 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 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 ones 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 peoples quality of life thus as a local leader the village government could influence individual entrepreneurs to develop village potential into business opportunities with a sociocultural 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 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 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… 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 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 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 perhutanis 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 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 the role and contribution of individual business actors were deemed pivotal business actors from the political elite could contribute to village development depending on ones 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 politicalbased 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 assetbased 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 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 action as a dynamic interaction between activities action strategy as a combination of actions exposure to activities and means for dynamic action conditions and 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 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… these results are in line with several other studies emphasizing that the role of entrepreneurs in rural areas could develop the selfquality or competence finance networking and other aspects additionally better village development is apparent to affect the social structure leading to the creative spirit good leadership innovation and sound managerial practice in any management sphere the spirit of entrepreneurship in leaders or individuals certainly provides a better outcome in developing sustainably and environmentally friendly villages the findings of this study follow imelda et al revealing the performance of taskoriented farmers furthermore the entrepreneurial character of farmers who are workoriented and optimistic about results would boost the performance of lowland rice farming 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 studys findings align with the entrepreneurs attachment to the village as an essential aspect of development commitments the village communitys feeling emphasized by rural entrepreneurs is essential to the expected outcomes and cooperation 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 political assetbased re economic assetbased re and social networkbased 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 studys 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 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 authors contributions syh writing the original draft preparation creation and presentation of the published work explicitly writing the initial draft 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 revisionincluding preor postpublication stages conflict of interest the authors declared no conflict of interest

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 indepth 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 politicalbased re 2 economic assetbased re and 3 social networkbased re meanwhile entrepreneurs could accumulate rural resources comprising local government and socialeconomic 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 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 government policies and medical guidelines that interfere with inperson 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 nonhousehold members where that was impossible or impractical they recommended that everyone maintain at least six feet of space between nonhousehold members experts proclaimed that these strategies were the best tactics for limiting the transmission of covid19 at the beginning of the pandemic 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 notes covid19 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 covid19 decrees in particular many us religiously conservative groups objected to government interference with their faith pointing to puzzling inconsistencies these resisters argued that covid policies infringed on their right to worship 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 stayathome orders 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 christian nationalists were particularly resistant to covid19 mandates viewing them as contrary to economic prosperity and liberty this resistance was likely also rooted in cultural distrust of medicine the government and science in response to these restrictions some congregations simply ignored the guidelines others canceled services many adapted some through hybrid services 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 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 sixteenthcentury 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 rebaptizers 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 amish and mennonite groups are distinct with many variations within each group2 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 gods 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 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 gods higher law 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 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 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 2040 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 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 nonamish neighbors if they need to make a telephone call 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 workrelated issues these guidelines encourage amish people to keep cell phones out of the home inperson collective rituals are a cornerstone of the anabaptist faith amish services are fullday 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 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 the size of amish church gatherings with 20 to 40 families crowding into a home for worship and the postservice meal creates opportunities for viral outbreaks once one member becomes infected 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 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 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 6142604281 data and method we collected data from the budget an international amishmennonite correspondence newspaper that focuses on us communities and currently has a circulation of around 18500 the budget is an important institution serving as the major means of communication among amish settlements the budget published weekly includes dispatches from scribeswriters who live in amishmennonite communities3 across the us and world scribe letters typically follow a general pattern including a report on the weather church news community news itemsbirths deaths member health information visiting practices and a narrative section including any other topic of interest while some scribes submit an entry every week many write every other week or once a month 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 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 contentanalyzed all ohio and pennsylvania scribe entries published between march 18th and may 6th 2020 we coded eight editions of the budgetmarch 18 and 25 april 181522and 29 and may 6th scribe letters typically report the previous weeks events which means the march 18 th may 6th editions reflect the period from midmarch 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 it is important to note that the budget started publishing cdc recommendations on covid19 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 in contrast many mennonites use dedicated church buildings and mennonite scribes usually provide their churchs 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 amishmennonite groups the classification also includes horse and buggy mennonites who use a meetinghouse for church services 4we counted the number of entries reporting inperson sunday church to measure noncompliance with social distancing and isolation guidelines inperson sunday church violates the cdcs guidelines to avoid or limit contact with nonhousehold members and avoid large gatherings we coded whether sunday church occurred was canceled or altered due to covid19 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 inperson rituals can spread the virus within the community we also collected data on the number of times visitors were mentioned as having attended inperson services of the 1503 entries we coded 78 mentioned sunday church whether inperson 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 categories and have replaced names of people and congregations with initials because the number of entries varies by the community we also report the percentage of communities falling into each of these categories to capture the extensiveness of these categories if we classified any entries tied to a particular community in a category we counted that community as reporting that 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 universitys institutional review board determined that this study does not meet the definition of human subjects research findings we present results for two units of analysisentries and communities using entries allows us to capture the number of times inperson sunday services were held or canceled reflecting the prevalence of compliance with social distancing guidelines however some communities practiced more compliance than others since there is variation in the number of entries submitted some communities have 1 3 journal of religion and health 6142604281 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 category at least once that is the prevalence of the categories across communities business as usual tables 1 and2 present the prevalence of budget entries and communities in the study period that mention sunday church sixtyfive percent of entries reported inperson sunday church and 94 percent of all communities had at least one entry that reported inperson sunday church thus nearly all religious communities in our sample held sunday church at least once inperson during midmarch and april of entries mentioning inperson sunday church approximately 97 percent exclusively offered it inperson with only 3 percent offering it inperson with a remote option the prevalence of inperson 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 visitorspeople 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 inperson 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 than mennonite entries scribes will often note outofstate 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 … not only did members of different households within the same communities gather for inperson sunday church but people from other communities also attended church 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 ms but was changed due to sickness in some instances the cancelation of services led to more visitors in communities still meeting regularly visitors today were p ms of somerset who came since their church was canceled because of pennsylvanias quarantine concerning the covid19 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 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 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 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 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 ms … 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 … while the scribes recognized the impact of sickness on attendance there was no mention of canceling church or restricting travel alterations to inperson church thirteen percent of entries mentioning inperson sunday church indicated altering church in some manner of communities describing inperson 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 postchurch 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 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 its okay to have church services with regulations such as families seated together and no noon meals 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 rs b s c es 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 twentythree percent of the alteration entries referenced prohibitions against social contact specifically no handshaking or christian greeting 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 ms visitors were j ms and lots of young folks … there was no food served and no handshakes quite a few were missing 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 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 6142604281 the most at risk of severe covid19 complications overall more commonly reported among mennonite communities than amish this form of social distancing allowed limited numbers to enjoy inperson church cancelationspostponements while many communities continued having inperson church others canceled for some time table 3 presents the prevalence of entries and communities that canceled inperson services and those using adaptive technology fortyone percent of entries reported canceled inperson church corresponding to 66 percent of communities with at least one entry mentioning canceled inperson church of those only 375 percent of entries and 31 percent of communities mentioned remote church cancelation varied by religious affiliation with 33 percent of amish entries reporting canceling inperson church compared to 68 percent of mennonite entries they also differ in whether they offered technology to replace the canceled inperson service with mennonites being much more likely to do so 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 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 several scribes indicate the importance of fellowship an amish writer in oh notes no church news since its been 4 weeks since weve 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 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 church using technology while the above alterations to inperson 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 inperson services or in place of them of the entries mentioning technology 87 percent reported that members connected to a conference linetelephone 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 lets continue to work together in this and also be respectful of the guidelines set in place even if it means canceling church services etc 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 drivein 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 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 covid19 and become superspreader events the cdc recommended cessation of inperson religious gatherings or substantial alteration following social distancing guidelines some religiously conservative groups met the moratoria on worship with resistance numerous studies demonstrate a negative association between religious conservatism and healthy pandemic behaviors 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 in both the 1918 influenza and covid19 pandemics some congregations made headlines for violating mandates to close alter or restrict the size of their worship services 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 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 governments law when it does not conflict with gods law in cases of conflict they comply with what they believe is gods will however they also believe it is gods 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 inperson 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 6142604281 not when the measures were mere recommendations while research suggests that christian nationalists were more likely to claim that covid19 social distancing guidelines violated their freedom to worship 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 covid19 in an amish community in ohio the cdcs contact tracing identified six inperson religious and social events occurring in the two preceding weeks our data suggest that some amish traveled outoftown for church because state authorities prohibited church in their location such travel undoubtedly amplified the viruss 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 stayathome orders our findings advance this research by suggesting that at least among the amish some people traveled outoftown specifically to attend church services in locations where they werent prohibited more research is needed on how restrictions on religious gatherings in locales may facilitate travel to less restrictive locations and impact covid19 infection rates religious conservatism and intense religiosity have generally been a barrier to healthy pandemic behaviors in the usa yet some amish and mennonite congregations found ways to adapt to the covid19 health recommendations while maintaining their religious commitments adaptations that still allowed inperson 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 inperson 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 covid19 combined with government restrictions led to canceling inperson services and transitioning to remote services through technology indeed the cdc recommended this and many congregations complied a 2021 nationally representative sample of us congregations found that 80 of congregations offered a hybrid option for religious services 5 of congregations had services solely online and 15 had services exclusively meet in person ninety percent of evangelical protestant congregations offered a hybrid option 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 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 facetoface 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 facetoface 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 covid19 more research is needed on how they and other religious groups that restrict communication technologies have responded to the challenges of covid19 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 additionally as the budget is a prominent means of communication across settlements 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 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 inperson 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 6142604281 conclusion while research on us conservative religious groups reactions to the pandemic indicates a general resistance to government mandates during the pandemic 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 covid19 this study is one of the first to examine how the covid19 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 covid19 pandemic more research is needed on how members of these communities cope with the pandemic given limited opportunities for interaction and how they adapt to the availability of a covid19 vaccine 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 covid19 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 inperson religious rituals to reduce transmission will be more likely to be implemented than interventions emphasizing virtual rituals data availability newspaper data is publicly available ethical approval not applicable publishers note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations

at the onset of the covid19 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 covid19 policies in the usa we draw data from ohio and pennsylvania scribe entries published in an amishmennonite 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 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 shortterm behavioral gains may be lost in the longterm 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 sociocultural norms and perceptions may shape them throughout time while habits in early childhood are influenced directly by parents selfcare gradually shifts towards selfdirection 8 elements related to the individual such as selfconsciousness 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 regions 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 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 233 and 22 respectively alarming statistics from argentina show that in children this problem impacts 99 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 persons 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 47 in argentina and bolivia 58 in brazil 47 in colombia chile and uruguay are in 5 peru 48 and mexico and venezuela follow closely with 42 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 63 in argentina 93 in brazil 65 in chile 58 in colombia 36 in mexico 76 in paraguay 57 in peru 57 and 44 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 international childrens emergency fund 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 1519 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 47 of people aged 1516 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 network adhering to healthy living behaviors has a direct impact on a persons 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 physical sphere many interventions focus on this sphere by understanding the obesitypromoting 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 crosssectional 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 was signed in latin america to promote an active lifestyle encouraging the use of bike paths or physical activity programs at school 2930 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 highcalorie food 31 in 2016 chile promoted labeling the front of the packages with a blackandwhite 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 information 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 checkups 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 13000 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 005 usd per liter on sugarsweetened beverages 37 another strategy focuses on food labeling these labels indicate the foods 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 threemonthlong 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 healthpromoting 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 700 am until 100 pm families can walk with their pets and ride bikes in this avenue where vehicular circulation remains closed and becomes 5 kmlongpark the initiative has been well received with approximately 12000 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 activitypromoting 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 webbased 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 anxiety and insomnia in heavily affected countries like china and italy frontline health workers are also at risk of developing posttraumatic stress disorder as a consequence of the coronavirus outbreak 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 in the physical emotional and lifestyle spheres methodology the approach considered for this study was quantitative and descriptive with a crosssectional 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 closedended question survey was designed following the hlpivot framework of healthy living an additional openended 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 selfassessment in each of these behaviors these items consider a 1100 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 openended 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 1821 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 nutritional state and physical activity 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 886 of colombians and 825 of mexican participants the results of colombian and mexican participants prioritized emotional wellness as the first choice with 3625 and 4021 respectively according to the results participants selfassess higher on their nutritional status with a weighted mean of 7794 the lowest selfassessment was found on avoidance of noxious habits with a mean of 2909 these results are presented in table 2 the results of the openended 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 selfcare 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 289 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 i value my psychological wellness because it is important for remaining focused in school emotional wellness has an impact on all aspects of your life when you are not mentally healthy you cant perform in your life as usual according to participants communities are now prioritizing selfcare higher i make myself a priority in my life i consider this important to achieve my goals in life i prioritize the things that make me feel happy and make me feel good close to 1491 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 metime and value my selfcare i have spent a lot of time with myself and have learned the importance of taking care of myself the importance of physical activity increased as participants spent more time in their homes close to 1442 the majority emerging from participants in brazil commented on this theme i have made my physical wellness a priority in my life being sedentary kills… you have to exercise yourself i have made physical activity and healthy eating a priority in my daily routine several participants took into consideration more than one of the spheres of healthy behaviors addressing the importance of gaining holistic health wellness 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 i knew before the pandemic but now i have seen a stronger correlation between every aspect of my health you cant have good mental health without physical activity a healthy diet or relaxing activities i also learned to prioritize activities that make me feel good and step aside from the things that emotionally drain me 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 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 on the other hand several students reported a perception of their wellbeing had being worsening during the pandemic my personal wellness has worsened amidst the pandemic it is tough to be ok in a wellness state since the pandemic started some describe the causes that have impacted for example the motivation i dont feel motivated to exercise the pandemic has affected me physically and psychologically discussion in this study mental health was the highestranked 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 selfassessed 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 energydense and nutrientpoor 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 participants 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 lifelonglearning habits depend on selfdirected 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 crosssectional approach that we used the students 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 pandemic 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 persons 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 longterm 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 diazlopez ar garcia a mendez and db dibai contributed to the colection of the data ar garcia and a mendez analyzed the data mm diazlopez 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

resumo o completo bemestar 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 bemestar 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 bemestar o contexto latinoamericano desafia o desenho de estratégias com uma perspectiva holística da saúde com complexidades nos domínios econômico e sociocultural palavraschave comportamento saudável

of medicine 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 programinduced improvements in parenting led to childrens enhanced academic functioning and achievement further only one study has examined possible mechanisms through which these programs may affect educational outcomes zhou et al found that improvements in effective discipline mediated the effects of their preventive intervention the new beginnings program on grade point average at the sixyear followup 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 that provides the foundation for educational and job attainment in later developmental stages for instance harackiewicz barron tauer carter and elliot found that young adults academic goals predicted their later educational achievement also judge cable boudreau and bretz 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 goaldriven 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 motherchild relationship quality and effective discipline and four aspects of youth behaviors externalizing problems internalizing problems selfesteem 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 childrens mental health problems substance use and social problems by modifying risk and protective factors that have been linked with the negative postdivorce outcomes 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 shortterm and longterm effects the trial found that the effects of the two conditions on mediators and outcomes at posttest and shortterm followup did not differ thus these two conditions have been combined in subsequent analyses of the nbp program effects were found at posttest on motherchild relationship quality effective discipline and motherchild report of childrens externalizing problems and internalizing problems the sixyear followup 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 and selfesteem than participants in the literature control condition many of the program effects at posttest and followup were stronger for those with higher levels of baseline risk 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 theory and research also suggests that quality of parenting is related to adolescents educational and occupational goals aspirations and engagement 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 parentchild bond eccles et al 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 illustratively schmittrodermund and vondracek found that parental involvement in childrens activities was prospectively related to more career exploration and planning in adolescence glasgow dornbusch troyer steinberg and ritter 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 and that these problems are linked with later negative academic and occupational outcomes both in adolescence and young adulthood fergusson and horwood proposed that earlyonset 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 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 found that childhood externalizing problems were linked with low academic achievement and competence seven years later when participants were adolescents risi gerhardstein and kistner also found that childrens 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 childrens internalizing problems but the support for the link between childrens internalizing problems and their educational and occupational outcomes is limited rapport denney chung and hustace 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 also showed that internalizing problems in schoolaged 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 masten et al 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 selfesteem and decreased academic achievement during childhood and adolescence researchers have demonstrated that both academic selfesteem and general selfesteem are linked to academic achievement and occupational goals theoretically baumeister campbell krueger and vohs suggested that individuals with higher selfesteem will be more likely to persevere when faced with failure and wigfield and eccles proposed that ones belief in his or her abilities should determine expectations for success flouri showed that childrens selfesteem at age 10 was related to their educational attainment 16 years later trzesniewski et al also found that adolescents low selfesteem was linked with a decreased likelihood of attending college and more workrelated problems in adulthood bandura barbaranelli caprara and pastorelli found adolescents academic selfefficacy was linked contemporaneously with academic performance and that academic selfefficacy 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 programinduced changes in motherchild relationship quality effective discipline and youths externalizing and internalizing problems selfesteem 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 currently 10 million children live in divorced or separated households 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 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 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 experimentallyinduced changes in parenting and youth variables account for experimentallyinduced 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 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 followup phone calls to assess eligibility families that met eligibility criteria were asked to participate in an inhome 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 livein 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 motheronly program dualcomponent program or literature control condition of the families contacted by phone 48 met the initial eligibility criteria of these families 68 completed the recruitment visit 75 of the recruitment visit completers agreed to participate in the intervention study 92 of these families completed the pretest we found 16 to be ineligible at the pretest interview an additional 8 withdrew before assignment thus 36 of the eligible families were randomly assigned to condition analyses revealed that participating families reported significantly higher incomes and maternal educational level and had fewer children than refusers at the sixyear followup 218 families were interviewed attrition analyses comparing those who attrited between pretest and the sixyear followup to those who remained in the study on baseline demographic variables and childrens internalizing and externalizing problems revealed no significant attrition or condition x attrition interaction effects indicating that attrition did not pose a threat to internal or external validity at pretest children were on average 1034 years of age 50 were female mothers ethnicity was 90 caucasian 6 hispanic and 4 other average annual household income was 20001 25000 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 267 months and divorced an average of 123 months baseline equivalence between the experimental and control conditions in regard to childrens gender and age mothers ethnicity household income length of time since separation and divorce custody arrangements and childrens internalizing and externalizing problems was examined using χ 2 tests for the categorical variables and tstatistics for the continuous variables no significant differences were found in the families who participated in the sixyear followup youth were between the ages of 15 and 19 495 were female mothers ethnicity was 89 caucasian 6 hispanic and 5 other average annual household income was 50001 55000 legal custody arrangements were 53 46 and 1 sole maternal joint and paternal respectively families had been separated an average of 84 years and divorced an average of 72 years procedure families were interviewed on five occasions pretest posttest and 3month 6month and 6year followups 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 signed consent forms and children signed assent forms mothers and youth were interviewed separately families received 45 at pretest and posttest at the sixyear followup parents and adolescents each received 100 experimental conditions the mp targeted positive parenting interparental conflict and mothers attitudes toward the fatherchild relationship there were 11 group sessions five focused on the quality of the motherchild relationship and three focused on effective discipline two individual sessions focused on the mothers use of the program skills with her children sessions were led by two masterslevel 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 and mothers 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 roleplays and for the communication skills in a conjoint exercise with their mothers groups which consisted of 8 to 10 children were led by two masterslevel 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 childrens postdivorce adjustment and a syllabus to guide their reading see wolchik et al for more information about the conditions measures demographicsmothers responded to demographic questions such as their childrens age and living arrangement and their own ethnicity income and level of education data taken from t1 were used in the analyses motherchild relationship qualitymeasures of motherchild relationship quality assessed at t1 t2 and t5 were used mothers and youth completed a revised version of the acceptance and rejection subscales of schaefers child report of parenting behavior inventory parallel motherand childreport versions were used a sample item is my mom isnt very patient with me coefficient alphas were acceptable 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 mothers and children completed the 10item open communication subscale of the parentadolescent communication scale a sample item is mom is always a good listener coefficient alphas were acceptable scores on this measure have been positively linked with psychological adjustment in adolescents in addition mothers and children completed an adaptation of the 7item dyadic routine subscale of the family routines inventory a sample item is you had time each day just to talk with your kids coefficient alphas were acceptable scores on this measure and childrens adjustment problems have been shown to be negatively related all measures used the time frame of the past month the six measures were standardized and averaged to obtain a composite of motherchild relationship quality effective disciplineeffective 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 appropriate discipline and discipline followthrough on the oregon discipline scale sample items include when your child misbehaved how often did you yell when your child misbehaved how often did you restrict privileges and how often did you feel that it was more trouble than it was worth to punish your child responses on the appropriate and inappropriate items were used to compute a ratio of appropriatetoinappropriate discipline similar discipline measures have been shown to correlate with adolescents mental health problems also mothers and children completed the 8item inconsistency of discipline subscale of teleki et als adaptation of the crpbi which used the time frame of the past month a sample item is it depended on your mothers mood whether a rule was enforced or not coefficient alphas were adequate these four scales were standardized and averaged to create a composite score externalizing problemsexternalizing problems at t1 t2 and t5 were assessed using a composite of 33 motherreported items from the child behavior checklist and 30 childreported items from the youth selfreport 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 motherand childreports were standardized and averaged to obtain a composite score in addition teachers completed the sixitem acting out subscale of the teacherchild rating scale using the time frame of the last month a sample item is disruptive in class internalizing problemsinternalizing problems at t1 t2 and t5 were measured using a composite of 31 motherreported items from the child behavior checklist 28 childreported items from the revised childrens manifest anxiety scale and 27 childreported items from the childrens depression inventory 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 statetrait anxiety scale for children scores on the cdi have been shown to differentiate children who are clinically depressed from nondepressed psychiatric child patients and scores on the cbcl have been shown to differentiate children referred for psychiatric services from nonreferred children a composite score of internalizing problems was created by standardizing and then averaging the three measures selfesteemselfesteem scores at t1 and t5 were used t2 scores were not used because the program did not affect selfesteem at t2 youth completed the 6item global selfesteem subscale of the selfperception profile for children a sample item is some kids like the kind of person they are scores on this measure have been negatively related to childrens depressive symptoms academic competencescores 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 6item academic competence subscale of the coatsworth competence scale coefficient alphas were adequate scores on this measure have been linked with other measures of competence and with mental health outcomes a sample item is your child had problems learning new subjects at school motherand childreport scores were standardized and then composited by taking the mean in addition adolescents cumulative unweighted grade point average 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 outcomesat 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 the five response options ranged from completing high school to attending postcollege 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 occupations were subsequently scored according to level of prestige with higher scores reflecting more results analytical procedure structural equation modeling with mplus software 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 estimation fiml yields estimates that are less biased than the conventional listwise deletion or mean substitution in handling missing data 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 we first examined if the program x risk interaction effects on educational expectations and job aspirations were significant in accordance with aiken and wests multiple regression procedure a moderated effect was considered to occur if the interaction was significant and the johnsonneyman procedure was employed to probe the region in which the intervention and control groups differed significantly on the outcome variables we then conducted mediated moderation analyses 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 specifically we examined whether the mediation effect was significant at different levels of the moderator 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 divorcerelated stressors childexperienced negative events interparental conflict decreased contact with father per capita income and maternal distress both threewave longitudinal and twowave halflongitudinal models were employed to test mediation in both approaches the predictor was the program condition and the outcomes were educational expectations and job aspirations at 6year followup in the threewave longitudinal models the mediators were those for which positive program effects occurred at posttest motherchild relationship quality effective discipline internalizing problems and externalizing problems in the halflongitudinal models the mediators which were measured concurrently with the outcomes were those variables for which positive program effects occurred at the 6year followup motherchild relationship quality selfesteem 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 multimediator 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 competencegpa composite variables measured at the same assessment point were permitted to correlate with one another mackinnons guidelines for mediation were used in which mediation is established if the path from the independent variable to the mediator and the path from the mediator to the outcome controlling for the independent variable are significant according to the simulation study by fritz and mackinnon this method provides a more robust test of mediation than baron and kennys 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 was tested against the confidence interval ci ab ± where se ab is the standard error using the prodclin procedure if zero is not contained within the 95 ci it can be concluded that the mediated effect is significant preliminary analyses a boxs 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 the boxs m analysis is considered a conservative omnibus test that assesses whether the variance and covariance matrices of two groups differ significantly if boxs m is nonsignificant it can be concluded the relations among the variables do not differ significantly across groups the results showed that the variancecovariance matrices did not differ significantly 185 p 14 χ 2 554 p 14 thus the mp and mpcp conditions were combined for the analyses dummy codes were created for the lc and mp mpcp conditions the diagnostic indices of leverage distance and influence were calculated to identify potential outliers or influential data points 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 childs age and gender mothers and fathers 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 zeroorder 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 teacherreported externalizing problems such that younger children exhibited higher levels of externalizing problems gender was significantly correlated with t2 and t5 teacherreported externalizing problems such that boys scored higher than girls gender was also significantly correlated with t5 motherchild 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 motherchildreported internalizing problems t5 academic competence t5 teacherreported externalizing problems t5 educational expectations and t5 job aspirations fathers level of education was significantly negatively correlated with t2 motherchildreported externalizing problems time since divorce was significantly positively correlated with t5 selfesteem and t5 job aspirations adolescents whose parents had been divorced longer had higher selfesteem 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 mothers and fathers 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 the program x risk interaction effect was significant the johnsonneyman procedure revealed that for youth who had risk scores beyond 114 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 fathers 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 and the path from program x risk to job aspirations was significant the johnsonneyman 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 and the outcome 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 motherchild relationship quality effective discipline motherchildreported internalizing problems motherchildreported externalizing problems and teacherreported externalizing problems as shown all the mediation models fit the data adequately the program had significant effects on all of the mediators except teacherreported externalizing problems risk did not moderate any of the program effects on the mediators after controlling for the program effect none of the mediators had significant effects on educational expectations or job aspirations the direct effects from the program x risk interaction to the two outcomes remained significant because none of the models had significant 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 motherchild relationship quality motherchildreported internalizing problems motherchildreported externalizing problems teacherreported externalizing problems academic competence and selfesteem all of the mediation models fit the data adequately there were significant program x risk interaction effects on all of the mediators beyond the significant main effects on motherchildreported and teacher reported externalizing problems with the exception of teacherreported externalizing problems all the mediators had a significant effect on educational expectations only motherchildreported externalizing problems and academic competence had a significant effect on job aspirations threewave longitudinal modelsfigure twowave halflongitudinal modelstable for those models that had both significant a 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 motherchild relationship quality selfesteem motherchildreported externalizing problems motherchildreported internalizing problems and academic competence on educational expectations significant mediation effects also occurred for academic competence and motherchildreported externalizing problems on job aspirations for high risk youth to assess the unique mediation effect of each mediator motherchild relationship quality selfesteem motherchildreported externalizing problems motherchildreported internalizing problems and academic competence were entered simultaneously into the sem predicting educational expectations the fit of the model was satisfactory χ 2 4463 p 13 rmsea 03 srmr 03 cfi 98 all the a paths remained significant program x risk to motherchild relationship quality β 26 p 03 to selfesteem β 53 p 00 to motherchildreported externalizing problems β 54 p 00 to motherchildreported internalizing problems β 50 p 00 to academic competence β 34 p 01 the b paths from academic competence and from selfesteem to educational expectations were significant the paths from the other three mediators were nonsignificant probing of the simple mediation effects indicated that academic competence and selfesteem independently accounted for the effects of the program on educational expectations for the highrisk youth academic competence and motherchildreported 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 1029 p 33 rmsea 02 srmr 02 cfi 99 both a paths remained significant program x risk to academic competence to externalizing problems the b path from academic competence 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 for the highrisk youth discussion this study examined whether a parentingfocused intervention for divorced families affected youths 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 motherchild relationship quality as well as youth externalizing and internalizing problems selfesteem and academic competence at the sixyear followup mediated the effects of the program on highrisk adolescents educational expectations also measures of academic competence and externalizing problems at the sixyear followup mediated the effects of the program on job aspirations for highrisk 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 selfesteem 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 to include a domain of functioning that has significant consequences for adult educational and occupational success in the context of the consistent finding that youth from divorced families exhibit lower achievement in the domains of work and education and experience more economic difficulties 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 screening for level of risk may be an effective way to increase the likelihood of benefits of interventions for divorced families 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 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 followup assessments had been shorter than six years it is also possible that variables that were not assessed at posttest such as monitoring and supervising of schoolrelated activities school performance and completion of homework may be related to occupational and educational goals in midtolate adolescence several dyadic and youth variables assessed at the sixyear followup mediated the effect of the nbp on the educational expectations of highrisk youth the mediational effect for motherchild 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 supportive parenting may provide adolescents with the confidence and selfworth necessary to develop ambitious longterm 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 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 selfesteem internalizing problems externalizing problems and academic outcomes it is possible that high selfesteem 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 these processes may affect academic performance which then influences educational goals it is notable that the effect of externalizing problems was obtained for motherchildreported but not teacherreported 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 motherchildreported externalizing problems assessed at the sixyear followup mediated the effects of the nbp on highrisk adolescents job aspirations these findings are consistent with research linking academic success with later career success and socioeconomic attainment 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 highrisk 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 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 middleclass 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 highrisk adolescents and that these program effects were partially mediated through programinduced effects on academic achievement selfesteem externalizing problems internalizing problems and the quality of the motheradolescent relationship the finding of longterm effects of this program on educational and occupational goals highlights the importance of including followup 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 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 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 selfesteem 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 nondivorced families the findings from the current study indicated that the educational and occupational goals of highrisk adolescents from divorced families were enhanced through a preventive intervention that focused on improving parenting skills in addition these findings suggest that interventioninduced effects on several intrapersonal and interpersonal risk and protective factors such as selfesteem academic competence externalizing problems internalizing problems and motherchild relationship quality were associated with improvements in highrisk 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 parentingfocused preventive interventions for this atrisk population

this study examined whether the new beginnings program for divorced families led to improvements in youths 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 912 years at the initial assessment and data were part of a randomized experimental trial of a parenting skills preventive intervention targeting childrens postdivorce adjustment the results revealed positive effects of the program on youths educational goals and job aspirations six years after participation for those who were at high risk for developing later problems at program entry further interventioninduced changes in motherchild relationship quality and youth externalizing problems internalizing problems selfesteem and academic competence at the sixyear followup mediated the effects of the program on the educational expectations of highrisk youth interventioninduced changes in youth externalizing problems and academic competence at the sixyear followup mediated the effects of the program on the job aspirations of highrisk 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 eg amato 2001chaselansdale 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 eg sandefur

ethnographybased anthropology and sciencefiction 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 and a romantic stance on art have been profusely questioned and challenged since the postmodern turn in both social sciences and the arts this article aims at illustrating the possible porosity between ethnographybased 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 wellknown saying goes sciencefiction 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 nonexisting reality 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 readers commonsense 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 haraways speculative and sciencefiction inspired work on the future or the ethnographically based theorization of marilyn strathern 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 we could have been or become like them the literary work of ursula k le guin 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 guins oeuvre on aspects of her approach to gender and sexuality as well as politicaleconomic utopias and dystopias specifically i have been paying attention in her work to three aspects firstly how it shows that our gender and politicaleconomic 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 smallscale ecological and egalitarian and very much inspired in the ethnographic archives but without conceding to premodern nostalgia thirdly how productive the porosity between anthropology and sciencefiction can be for our disciplines contribution to the imagination of a feministand queerinspired world as well as a critique of our present situation ursula k le guins sciencefiction oeuvre deals among others with two fundamental topics of concern here gender and sexuality on the one hand and politicaleconomic 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 prefalloftheberlinwall era from a biographical point of view le guins upbringing in her fathers 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 the word for world is forest the dispossessed always coming home 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 subspecies 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 decide when and if to establish contact and provide technology bakercristales uses the wonderful expression social science fiction when referring to le guins ethnographic sensibility she notes how ethnographic writing neither fiction nor science and resorts to jamesons notion of how the belief that storytelling and imagination are entirely distinct projects from science and truthtelling is a product of a particular very circumscribed socialhistorical system modern capitalism as jameson has conveyed rather than predicting science fictions 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 bakercristales notes how often the protagonists of le guins 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 in the words of fredric jameson 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 it is complemented by world reduction a taking away of certain characteristics whether technological institutional or cultural of our habitual cultural world 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 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 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 nonhuman animal species the gethenian are in heat or kemmer so instead of eliminating sex gethenian biology eliminates sexual repression according to jameson for if le guins 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 wishfulfillments 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 guins works from societies where women are in power to those where there is no distinction between sexual orientations in the dispossessed 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 where capitalism is fullfledged 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 sciencefiction not quite le guin seems to want to say that it is an experiment an ongoing 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 abovementioned reference by jameson to the plot strategy of world reduction 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 malinowskis 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 to indigenous ways of living especially in what regards keeping smallscale ecologically balanced societies with close social ties based on communal modes of existence indigenous but of today and tomorrow this neotribal society exists while an internetlike technology is available kept by automated entities that do not interfere with human life but simply collect organize and provide information as bakercristales the connection between le guins 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 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 also refers to the connection between always coming home and the problematization of the anthropocene when she acknowledges her inspiration on le guin together with anthropologists marilyn strathern and anna tsingand how she helped her realize that utopias shouldnt be big systems and signifiers but actual smallscale human attempts at relation and connection with other species and the world haraway is the leading contemporary 2 see trouillot trouillots work can be a source of critique of homologies between western utopian thought and narratives of the cultural difference of colonized peoples le guins social science fiction avoids the trap of both the noble savage and the savage primitive author acknowledging the influence of le guin when she writes that le guins carrier bag theory of narrative comes to the rescue along with biologist deborah gordons 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 is referring also to stories that deal with nonhuman 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 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 twentyfirst century james clifford revisits the wellknown story 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 kroebers museum at berkeley he also tells the story of theodora kroebers popularization of ishis story and symbolism in her books especially her childrens book 3 he goes on to narrate the story of orin starns investigation of ishis 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 kroebers and the universitys actions in the past and of course he cannot avoid mentioning ursula why and how because in a way he establishes an opposition and contrast between le guins work especially the abovementioned always coming home and kroebers purified precontact reconstructions of california in a subchapter titled utopia he says how ursulas work draws on folklore popular culture taoism postsixties feminism and environmentalism and how much these are themes that are central to ishis world for many years i used le guins 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 and how much ethnographybased 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 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 clifford focuses precisely on this book in le guins parable … anthropological humanism emerges as both essential and impotent in situations of colonialanticolonial antagonism lyubov the main character an anthropologist of sorts is unable to reconcile interpersonal 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 together with extreme racism and extermination of the savages whose rich culture and indeed alternative social and ecological organization is dismissed 4 it is at the very other end of the line connecting kroebers anthropology and the native american experience of kroebers time on the one hand and todays native american situation as well as contemporary utopian visions on the verge of the anthropocene on the other then in kroebers time the last wild man the unavoidable result of the triumph of civilization something to feel sorry about but unstoppable for supposedly good reasons 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 selfrepresentations newly invented or consolidated tribal entities mixed and urban identifications etc and anthropologists who consider the difficulties of crosscultural 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 says poetically ishi in a loincloth ishi in work clothes ishi with feathers ishi in a suit and tie becoming indigenous after colonization is after all what we can find in always coming home in her theoretical essay inspired by that novel a noneuclidian view of california as a cold place to be le guin 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 oneway 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 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 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 persons 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 guins novels like all good science fiction succeed in being internally consistent and logical sciencefiction 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 colonialismcumcapitalism 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 guins invented knowledge of other worlds and the anthropologists knowledge of worlds created by others provide materials and imaginative designs for altertopias if le guins father alfred kroeber was salvaging the savage kroebers 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 lifegiver a genital 6 le guin 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 thoughexperiment physicists often do thoughtexperiments 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 einsteins elevator schrodingers cat my gethenians are simply a way of thinking following her inspiration and in order to take seriously my approach to the porosity between sciencefiction 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 b their exposure to le guins fiction 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 guins novels from the socalled 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 guins 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 alam 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 ads smile had then been also one of encouragement do not worry there will be a next time and who knows youll 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 whaleoil lanterns held by relatives waiting for you some higher some lower probably held respectively by adults and children slowly the dark shapes of the arakens 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 were the states 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 aganuruk 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 headpriest 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 wouldnt do that ad always reserved the expression of emotions for smiles looks body movements most people experienced a ships 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 horserides 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 alam 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 traveladventure 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 offkey 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 ads attention eyes and body were focused on me and when i got close it was relief that i felt ads 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 well talk about your trip tomorrow i recall feeling ads breasts harden ad must have felt the same with my penis and immediately in those brief seconds of desires work when ones desire pulls the others desire and viceversa i felt the same happening to ads 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 semisecret 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 alam 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 ads voice was now in the opposite register of the music of sex from a few hours before dont you think its better that after this second attempt you abandon your pursuit but i wont abandon my pursuit ad even you still support me on that dont 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 semisecret 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 alam 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 alams dwelling to inhabit it with life did alam create the plants that grow from earth cast their seed and generate their own twins not satisfied with the plants did alam create the animals that move on it and did alam 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 alam 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 alam themselves the one that is everywhere and nowhere why are you reading me that ad i know the holy alam by heart because you cant take away from people that minor sentence minor but of the greatest importance in the divine image at least you cant do it yet and only alam knows when you can… but what i defend is somehow there in the text i argued alam was not satisfied with twosex animals one can say that alam 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 twosex characteristic such as monkeys do my theory is not incompatible with the sacred texts nor with the ability that alam 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 im 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 isnt a species like our own but in a previous evolutionary stage a stage with two sexes no ev that is not my problem i didnt understand ads 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 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 narrowminded 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 twosexed creatures ads 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 trespassers 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 couldnt even say goodbye to ad and there wont 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 ads 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 alam 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 alam 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 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 dont understand the language but they talk the work of alam praised be they then i watched them closer mutilation i thought abnormality too some of the creatures had a penis a bag for exoeggs 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 aganuruk the divided people dimorphic dimorphs found what ive been looking for … … too late henceforth i most advanced representative of the higher stages of evolution and alams 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 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 noncentrality of gender in the western conceptual sense they do not provide us with the absence of gender

ethnographybased 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 creativeartistic 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 guins themes

type for pi and nonpi of those children approximately 1500 were adopted to the united states in 2009 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 socialemotionally depriving or gunnars level three institutions meeting all needs except for typical caregiverchild interactions and stable longterm 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 60100 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 indeed many institutional children are classified as having disorganized attachments thus research with these children can more specifically address the impact of early socialemotional deprivation rather than other factors often associated with institutions on later outcomes theoretical basis for investigating postinstitutional outcomes attachment attachment theory 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 childs 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 although childrens 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 in the institution high childrentocaregiver ratios agebased transitions high staff turnover and inconsistent staff schedules create an environment in which forming an attachment is all but impossible 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 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 111 support for an attachment perspective attachment to a caregiver and responsive caregiving are theorized to support early behavioral cognitive and social development in nonpi children and insecure attachment especially when disorganized is related to poorer outcomes in these areas research has also established a connection between extended institutional experience as assessed by age at adoption and behavior problems executive functioning problems and social difficulties in childhood and adolescence deficient early socialemotional experience and lack of relationships in the institutions are hypothesized to be especially important to the quality of important relationships one study 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 studies have also found that longer time spent in the institution is associated with less secure attachment to adoptive mother 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 socialemotional deprivation and lack of attachment relationship one relevant study found that later adoption was associated with poorer selfreported support from a best friend importance of relationships with mothers siblings and friends mothers although most research focuses on e arly motherchild relationships the quality of this relationship remains important throughout adolescence nonpi 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 adolescents perceptions of high quality relationships with mothers have been associated with lower levels of adolescent depression and delinquent behaviors higher levels of mental wellbeing and increased friendship quality very little research has examined motheradolescent relationships in adoptees institutionalization has been associated with poorer motherchild relationships in early childhood although most young pi children have good relationships with their adoptive mothers one study found that a similar proportion of pi and nonpi adolescents had positive relationships with their adoptive or biological mothers conversely adoptive mothers of noninstitutionalized domestic adoptees have reported more disagreements with their adolescents than biological mothers or stepmothers siblings in studies of nonpi children sibling relationships are exemplified by high levels of conflict along with affection alliance companionship intimacy and nurturance this environment of simultaneous closeness and conflict theoretically allows children to test and to develop social skills necessary for maintaining other relationships specifically positive sibling relationships are linked to behaviors necessary for high quality friendships including better conflict resolution strategies higher levels of companionship and recreation with friends increased selfdisclosure increased reciprocal interactions and for girls more emotional understanding further positive sibling relationships have been directly related to increased friendship quality in middle childhood and early adolescence the only study of pi adolescents sibling relationships reported more difficulties with siblings for pi children than nonpi comparisons among noninstitutionalized domestic adoptees no difference was found in relationship quality between adoptees and their nonadopted siblings and two biological nonadopted siblings 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 and similar patterns are found for domestic adoptees this finding suggests a protective effect of having a sibling because older age at adoption is generally related to more not fewer behavior problems further socialemotionally deprived pi children may benefit more from additional interactions with siblings than nonpi children because of their limited earlier relationship experience friends approximately 78 of nonpi children in middle childhood have at least one best friend and the best friend relationship is exemplified by companionship intimacy enhancement of worth and some conflict in adolescence friendships tend to be high in support intimacy and affection with some decreases in companionship and nurturance with age these findings may be qualified by sociometric status such that highand averageaccepted children have more supportive and intimate friendships and are more satisfied with their friendships than lowaccepted children however lowaccepted children show the greatest variability in friendship quality suggesting that some lowaccepted children have very satisfying friendships but perhaps with only one or two close friends poor friendship quality in nonpi children has been related to loneliness depression high school dropout rates behavior problems and criminality conversely high quality friendships are related to school involvement higher grades and social competency further children and adolescents who have at least one supportive friend are more involved in school are more popular and socially competent achieve higher grades and have fewer behavior problems than those with no supportive friends pi adolescents who spent more than 24 m onths in a globally depriving romanian institution reported less support from a close friend than nonpi children earlyadopted noninstitutionalized romanian controls and pi children adopted before 24 months hodges and tizard also found pi children to be less popular and less likely to confide in friends than nonpi comparisons indirectly several studies that use parentreported measures of childrens social problems which are likely related to friendship quality find that pi children have more reported social problems and disinhibited social behaviors than nonpi children also later adopted pi children tend to have more parentreported social problems than earlier adoptees these studies suggest that more exposure to institutions with deficient socialemotional relationships few contingentresponsive 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 certain characteristics of siblings have been associated with enhanced relationship quality in nonpi children however essentially nothing is known about these factors among pi children relative age among nonpi children there are benefits of having an older rather than a younger sibling nonpi children with older siblings report greater admiration intimacy affection and prosocial behavior in their sibling relationships than children with younger siblings however companionship may be greater with closely spaced younger siblings 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 karos et al found that both the negative correlation between rivalry and reciprocal interactions and the positive correlation between reciprocal interactions and socioemotional problem solving in the sibling relationship was seen only for children with older siblings further children have reported that parents favor younger siblings 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 and having an older sibling is associated with better sibling relationship quality it is expected that having an older sibling will be related to positive friendship quality gender composition for nonpi children samegender siblings may be more beneficial than oppositegender siblings samegender siblings report higher levels of positivity warmth and closeness companionship and intimacy than oppositegender siblings in fact furman and buhrmester described samesex sibling relationships as friendships but with higher levels of conflict the positive effects of samegender sibling dyads may also be associated with friendship quality 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 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 those adopted with biological siblings also had fewer problems than single adoptees regardless of adoptive siblings 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 childrens selfreported relationship quality with mothers siblings and best samesex friends children aged 1017 years who had been adopted from primarily socialemotionally depriving baby homes in the russian federation completed a selfreport 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 nonpi children it was expected that pi childrens pattern of relationships with mother sibling and best friend would be similar to that of nonpi children but that pi children would report poorer relationship quality 2 does more prolonged socialemotional 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 attachment theory and past research on s ocial skills and behavior problems 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 3 do sibling relationship characteristics moderate the association between age at adoption and relationship quality children with older siblings and those in samesex sibling dyads were expected to show a s maller ageatadoption effect than those with younger and oppositesex siblings respectively 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 who were adopted from institutions in the russian federation into usa families the russian institutions have selective socialemotional deficiencies but adequate physical resources 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 agencys newsletter they then received the packet of questionnaires containing a letter from the adoption agency director and informed consent materials some questionnaires were child selfreport and a separate informed assent for the child was included specific instructions were given for the parents not to look at the childrens answers and for the children to complete the questionnaire in private and to seal it for privacy participants were offered a modest payment for completion of the surveys demographic information parents reported the childs 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 childs 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 parents education or preadoptive child factors such as birth weight they were not used as covariates in the analyses age at adoption was used as a surrogate for time in the institution 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 thus age at adoption is used both as a continuous and a categorical 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 older sibling or younger sibling gender composition was defined as no s ibling same gender or opposite gender finally sibling adoption status was defined as no sibling biological child of adoptive parents or adopted child 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 is a child selfreport 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 for the current study children were asked to answer questions based on relationships with their mother samesex best friend and sibling these nominations were selfselected 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 or no sibling 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 selfreport measure that shows the childrens subjective interpretation of the relationship rather than its objective quality the childrens perception may be the most important aspect of the relationships because this shapes their own behaviors and their interpretation of others behaviors the nri spv had adequate reliability in the current sample cronbachs alpha internal consistencies for all subscale scores were greater than 60 except mother instrumental aid the composite scores had cronbachs alphas between 85 and 94 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 in the current sample validity of the nri was investigated by comparing composite scores to the parentreported internalizing and externalizing broadband scales of the child behavior checklist using both extreme cbcl scores 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 and siblings thus poorer selfreported relationship quality did appear consistent with parentreported 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 selfreport and parentreport data and children of the same age with only parentreport data a multivariate analysis of variance comparing the two groups on cbcl internalizing externalizing social thought and attention problems was not significant f 139 p 23 nor were any univariate tests 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 nonpi children may not be appropriate for pi children to address this concern the subscale scores for each relationship and their association with age at assessment and gender were examined in individual repeated measures analyses of variance with post hoc comparisons between relationship sources these analyses included only children with data for all three relationships mean scores for each subscale for the current pi sample and a nonpi sample of lempers and clarklempers 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 nonpi 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 nonpi children for each relationship significance is indicated in nonpi relationship column analyses included all children with data for each relationship a p 05 b p 01 c p 001 comparisons between relationships relative to the other referents pi children rated their mothers as the highest source of overall 1 and figure 1 nonpi versus pi table 1 shows comparisons between the current pi sample and a sample of predominantly white 1119yearold children reared by their biological parents in workingclass or middleclass families in rural midwestern towns 1 age at assessment and gender research with nonpi 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 to investigate age at assessment and gender effects and their interactions with relationship source in the current sample repeated measures anovas were calculated with posthoc contrasts for relationship source interactions 57 649 p 003 a nd support f 586 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 549 p 007 with mothers than boys the threeway 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 ageatassessment 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 ageatadoption 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 and a spline regression model the only significant ageatadoption 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 833 p 005 the overall regression was marginally significant f 199 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 neither the dichotomous model f 089 p 51 nor the spline regression model f 133 p 23 were significant subsequent analyses used only the linear ageatadoption variable and figures depict this linear association extreme scores pi children are often distinguished by extremes rather than average scores 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 nonpi 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 and mean scores less than 2 were considered bad for negative interaction scores less than 2 w ere good and greater than 4 were bad this provided a description of the qualitatively highest and lowest scores second zscores were created and for social support children with zscores in the highest 15 were considered good whereas those in the lowest 15 were considered bad for negative interaction the lowest 15 were good and the highest 15 were bad the 15 cutoff 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 chisquared 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 2 498 p 03 and bad χ 2 528 p 02 social support from their siblings than earlier adoptees later adoptees also had a higher percentage of bad negative interaction χ 2 498 p 03 with their siblings although age at adoption was dichotomized for simplicity these percentages also increased linearly tests of age at adoption x age at assessment and age at adoption x gender revealed no significant effects note comparisons are within variables a p 05 b p 01 sibling characteristics the following analyses used linear regression to examine whether characteristics of siblings 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 ageatadoption 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 345 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 441 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 the overall regression for negative interaction was not significant f 105 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 although the regressions predicting mother f 229 p 03 r 2 23 sibling f 23 p 049 r 2 22 and friend f 203 p 049 r 2 21 social support were significant neither age at adoption nor sibling adoption status were significant predictors the regressions predicting negative interaction were not significant for mother f 098 p 46 sibling f 038 p 89 or friend f 072 p 69 mother the overall regression predicting mother social support was significant f 296 p 004 r 2 25 h owever neither age at adoption nor gender composition was a significant predictor the overall regression was not significant for mother negative interaction f 093 p 51 sibling the regression equation predicting sibling social support was significant f 414 p 002 r 2 30 the change in r 2 increased significantly for sibling gender composition r 2 change 10 f 679 p 01 and the interaction of sibling gender composition and age at adoption r 2 change 10 f 788 p 007 for children with samegender siblings age at adoption was not associated with social support but for those with an oppositegender sibling older age at adoption was associated with less social support although the overall regression predicting sibling negative interaction was not significant f 115 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 650 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 socialemotional deprivation the combination of these factors may allow them to develop higher quality relationships than nonpi children although this may be limited to earlier adoptees because high quality relationships are related to positive social academic and psychological outcomes in nonpi children 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 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 longterm developmental outcomes age at adoption contrary to findings with parentreported executive function behavior problems and social skills in this sample an ageatadoption stepfunction was not found for relationship quality instead increasing age at adoption was linearly related to increasingly poorer relationship quality attachment dyads samegender siblings may spend more time together especially in younger childhood 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 andor samegender 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 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 but the childrens 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 childrens 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 nonpi children however the childrens perception may be the best predictor of outcomes because children act and interpret others actions based on perceptions further the selfreport measure was associated with parentreported behavior problems finally the current study is crosssectional 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 childrens 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 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 socioemotional 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 338 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 the change in r 2 was significant for the interaction of age at adoption and sibling relative age r 2 change 08 f 570 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 the overall regression for sibling negative interaction was not significant f 091 p 49 r 2 09 however the r 2 change was significant for sibling relative age r 2 change 08 f 478 p 03 children with older siblings reported less negative interaction than those with younger siblings t 225 p 03 best friend the overall regression predicting friend social support was significant f 227 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 249 p 09 the overall regression predicting friend negative interaction was not significant f 150 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 468 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 whereas when the sibling was the same gender age at adoption was not associated with negative interaction best friend the overall regression predicting friend social support was significant f 310 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 308 p 05 h olding all else constant when children had no sibling or a samegender sibling age at adoption was not associated with friend social support however when they had an oppositegender sibling older age at adoption was associated with more social support for friend negative interaction the overall regression equation f 114 p 35 r 2 12 was not significant 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 samegender siblings buffered pi children from these negative ageatadoption effects especially for relationships with siblings pi relationship quality in the nonpi literature 22 of children report having no best friend however in the current pi sample only 3 children endorsed having no best friend further pi children reported a similar pattern of relationships for subscale scores across the three referents as nonpi children except that contrary to expectations they generally reported better not worse relationship quality than nonpi children spending time in a baby home especially the lack of responsecontingent 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 parentreared infants develop a relationship with their caregiver but the current data do not support such a specific age period in contrast sroufe et al 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 ageatadoption 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 motherchild 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 nonpi literature suggests children with siblings may learn the skills necessary for high quality friendships especially in terms of conflict resolution within their sibling relationships 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 nonpi literature 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 samegender siblings had higher quality sibling relationships than those with oppositegender siblings consistent with the nonpi literature in the current sample this was a buffering effect in which children with oppositegender siblings reported an association between older age at adoption and poorer sibling relationships but this was not the case for samegender 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 samesex siblings may spend even more time together resulting in more opportunities to practice relationship skills and to develop an understanding of relationships

orphanages in the russian federation are deficient primarily in socialemotional relationships st petersburgusa 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 2007rutter et al 2010 however researchers have not frequently examined relationship quality of postinstitutional 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 selfreported relationship quality using the network of relationships inventory social provisions version furman buhrmester 1985 of 1017yearold 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 samesex siblings buffered children from this negative ageatadoption association

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 12 in canada there are more than 250000 adult admissions and 14000 youth admissions each year to correctional facilities 34 on any given day there are about 40000 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 reincarceration 91516 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 1819 according to a protocol that we defined a priori 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 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 hivaids 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 eg 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 fouryear lag time from conducting a study to publication study types we included experimental studies quasiexperimental studies and observational 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 and not studies that specified only relative measures of health for some determinants of health such as gender raceethnicity 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 individuallevel data review procedures two reviewers 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 then reviewed each full article to assess eligibility with discussions regarding any decisions that were not clear data extraction for eligible articles one reviewer 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 provincialterritorial 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 crosssectional 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 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 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 key characteristics of included studies are summarized in table 1 seventyfive studies were conducted in multiple provinces of which 920 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 eightysix 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 seventyone point six percent of studies were crosssectional 206 were longitudinal and 77 were interventional the majority of studies 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 persons convicted of sexual offenses persons who used drugs aboriginal persons and persons with a history of selfinjury one quarter of studies included less than 100 participants 17 of which were conducted in the general population sixtyfour studies used only data from administrative databases or file reviews ie the researchers did not collect primary data most of which 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 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 substance use and social determinants of health outcomes while comparatively few studies reported communicable disease injury sexual and reproductive health and in particular chronic disease 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 3426 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 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 postrelease 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 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 selfesteem 6 intelligence 2 literacy 1 health survey could provide a crosssection 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 3233 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 4142 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 peerreviewed 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

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 postrelease 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

processes political concern for the societal impact of science and technology is in itself nothing new what distinguishes recent policies is a widespread interest in sociotechnical integration at the midstream cooperative or interdisciplinary research that targets early stage r d decisions as opposed to upstream funding or downstream regulatory decisions 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 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 opens one potential avenue for interdisciplinary collaboration in the research laboratory1 two laboratory engagement studies have applied this framework to address the question of social responsibility in research practices focusing on researchers critical reflections on the broader socioethical 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 socioethical context of their work contrary to the neutrality view of social responsibilitythe notion that the social responsibility of researchers is exhausted by the disinterested pursuit of scientific knowledgescholars have argued that the social responsibility of researchers should include critical reflection on the socioethical context of their work this normative stance reflects recent observations in ethical and normative scholarship 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 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 accordingly various scholars have suggested new multidisciplinary engagements in light of the radical ethical challenges posed by new and emerging science and technology 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 socioethical context of research as peripheral to their work 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 could it offer possibilities for defining a contextsensitive form of ethics using ethnographic methods that would open up the black box of science and technology to normative inquiry midstream modulation midstream modulation is a framework for guiding interventionoriented activities in the laboratory that aims to elucidate and enhance the responsive capacity of laboratories to the broader societal dimensions of their work 2 developed by erik fisher during a threeyear laboratory engagement study mm has been applied in a range of laboratories around the world as a form of sociotechnical integration research or stir 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 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 since the general possibility and utility of mm was tested in an earlier pilot study the studies presented here aimed to explore the extent to which mm could be applied to enhance labbased 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 these research studies asked two questions how can broader social and ethical dimensions of research be rendered visible in the laboratory and do laboratory practitioners perceive critical reflection on the broader socioethical context of their work to be relevant firstand secondorder reflective learning to assess the research findings in light of these questions i distinguish between firstand secondorder reflective learning firstorder 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 firstorder reflective learning thus concerns improvement of the technology and the improved achievement of ones own interests in the network secondorder reflective learning on the other hand requires a person to reflect on his or her background theories and value system in secondorder learning value systems become the object of learning while in firstorder 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 firstorder 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 in terms of responsibility such forms of reflection involve compliance to ones internal responsibilities towards the research community such as the responsible conduct of research and environmental health and safety secondorder reflective learning involves reflection on the research system including the valuebased socioethical premises that drive research the methodological norms of the research culture and the epistemological and ontological assumptions upon which science is founded 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 secondorder reflective learning in addition to several instances of firstorder 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 and in the school of life sciences at arizona state university tempe usa 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 preand postinterviews at the beginning and end of the study 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 interactions with research participants consisted of preand post interviews participant observation regular application of the protocol and collaborative drafting of visual representations of the research process the preand postinterviews enquired into the research objectives decisionmaking 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 812 h per week in the lab and participating in regular lab meetings whenever possible during the research phase the stir protocol was applied 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 sociomaterial configurations 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 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 interactionsand were classified only in retrospect schematic overviews of the research progress indicate the links between the interrelated series of decision processes mapped over the twelveweek period 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 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 and molecular biological techniques still reconstructing technical decisions by way of the protocol quite naturally brought out microethicsnormative issues concerning individuals and internal relations of the engineering profession 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 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 discussionslab practices responsible conduct of research and environmental health and safety concernsemanating directly from the laboratory work the feedback processes also occasioned discussion of macroethical issues normative issues that apply to the collective social responsibility of the profession and to societal decisions about technology 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 sciencepolicy interfaces and hypedisillusionment 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 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 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 socioethical context of their work to be relevant reflection within the system in several ways the iterative observation and feedback processes occasioned instances of firstorder reflective learning ie learning related to technological improvement and the improved achievement of the researchers 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 participants 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 celltocell communication r2a was searching for the compound in a bottomup fashion by measuring cell reactivity to different candidate compounds when i proposed a topdown 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 doesnt work such efficiency discussions thus served a threefold purpose they elucidated the details of the experiments probed whether an outsiders perspective could occasion new research opportunities and built trust enhancing a sense of colabor 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 ive 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 ive 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 … its 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 supervisors idea and then i came up with other stuff and we get to the point where im 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 … its also fun to see how you have four lanes or forks and then one of them stops because youre 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 of personal safety and wellbeing as a moral value as this behavioral change illustrates laboratorybased 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 firstorder reflective learning by elucidating and enhancing laboratory decisions whether aimed at improving the technology or achieving ones own interests 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 socioethical context of their work and the reasons for the regulations in the first place it would require broad and deep learning including secondorder 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 secondorder reflective learning relates to the moral dimensions of genetic engineering r1d at one point considered integrating a heterologous gene in the microorganism 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 im cloning a mouse gene because … i decided like im not going to do a human gene at least there was a choice between human and mouse well then ill go for mouse thats 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 its an imagething practically pieces of dna from one organism work better than others and synthetic genes dont always work optimally probably because of interaction with the genome where it comes from is important its a bit … ethical the dna is still from that person you put a piece of human in a microorganism i would have less difficulty if we would synthesize the dna based on the sequence of a human fragment of dna r1ds response included some morally relevant dimensions beyond the practical consideration that pieces of dna from one organism work better than others and synthetic genes dont always work optimally he showed awareness of possible issues in relation to public concern by saying that its 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 microorganism 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 we considered the background assumptions behind genetic engineering 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 secondorder 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 shouldnt go in the direction of synthetic higher organisms theres always a risk that others move in the wrong direction you shouldnt be using it for other purposes its like a knife you can use it for good or for bad … thats why we should maybe think about these things then there has to be extra regulation taking the longerterm 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 secondorder 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 preinterviews 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 its not just a fun thing were doing here r2a i wouldnt see what would be the point otherwise if it would not help the rest if thats 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 followup question does society benefit from your research c1a i hope so its not my immediate goal i havent thought much about it what im doing is basic research this is probably a little bit far away from … what im doing is too far away r1a honestly i dont 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 were 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 xradiation 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 societyimprovement then the learning curve of science will become less steep so … in the end its 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 thats 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 its 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 dont want any genetic modification would you say well thats the majority vote ill 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 dont 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 secondorder 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 socioethical 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 its 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 socioethical context came to life within the context of researchsomething that participants indicated not having experienced before neither through their ethics and society curriculum nor ethicallyoriented 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 postinterview 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 couldnt you do that differently and how does it work discussion these experiences suggest that the broader socioethical 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 socioethical 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 while adopting the overtly normative standpoint that researchers should engage in critical reflection like the mmstir pilot study 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 decisionmaking unlike the pilot study they also aimed to introduce relevant socioethical knowledge and perspectives and initiate discussion of specific moral questions as they arise in the laboratory context as ibo van de poel and peterpaul 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 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 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 approach towards ethical reflection that could lead to more meaningful interactions between scientists and ethicists 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 secondorder reflective learning proceeds by way of the perceived value of firstorder learning of improving the achievement of ones own interests during each studys 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 firstorder learning but could become a problem when there is strong normative disagreement in those cases the embedded ethicist has no jurisdiction 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 researchers broader social responsibilities that said mm has been found to enhance the critical reflection of research participants on the socioethical context of their work such reflection is arguably needed if other social and ethical programsupstream engagement technology assessment codes of conduct etcare to be successful the reflective learning documented here provides modest indications of websters 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 sense in which science has been legitimated this vision must be tempered by the danger of the sts practitioner becoming an integral coproductionist element of the very structures of power and culture which might be just what sts should be challenging 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 while not losing sight of the original intentions behind ones entrance into the laboratory walking the fine line between colabor 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 socioethical dimensions can be productively engaged during laboratory research midstream modulation was found to engender fruitful and meaningful collaborations between social and natural scientists encouraging secondorder reflective learning while respecting the lived morality of research practitioners not only did it help make broader socioethical 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 socioethical dimensions permeated their research importantly firstorder learning seems to be a prerequisite for the possibility of secondorder learning research participants willingness to engage in critical reflection on the broader socioethical context of research was seen to be dependent on their perception that the collaboration also improved the achievement of their own interests the ongoing observationbased 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 socioethical assessment with ongoing and future research directions

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 socioethical context of their work the results of these interdisciplinary collaborations confirm the utility of midstream modulation in encouraging both firstand secondorder reflective learning the potential for secondorder 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 socioethical context of research visible in the laboratory and helped enable research participants to more critically reflect on this broader context while labbased 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

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 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 intersubjective 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 societys 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 infantojuvenile 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 going to develop as expected and that the school will have difficulties in receiving it 1112 on account of the disability expectations concerning the childs 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 womens 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 1215 there is much we need to understand in our civilization about the necessity for family technical social and religious support when a childs 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 featurelength 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 nonverbal 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 amorim et al 16 16 produced a first documentary above the waves 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 womens 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 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 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 cavalcante 18 set up the project gênero e deficiência retratados no cinema biografias em debate sent to the office of the vicepresident for environment attention to and promotion of healthoswaldo cruz foundation supported by the instituto educateur kinera produções and criart as well as the veiga almeida universityintegrated social practices laboratory of the federal university of rio de janeironational museum thus funds were raised for postproduction 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 featurelength 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 bogotacolombia and tokyojapan a total of 22 cine debates were held and nine meetings with health and education professionals and students from primary to postgraduate 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 publics 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 bertauxs 19 idea of a life story philippe lejeunes 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 bertauxs 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 sociohistories as representations and their anchoring in a sociocultural context in codatos 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 films impact on health and education professionals and students its 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 postgraduation 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 health professionals at scientific events health professionals and graduate and postgraduate students primary education teachers and students 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 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 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 films initial landmark was its first showing at the 1st international healthcare congress in teresina when it still had a running time of 90 minutes in response to audience feedback the filmmaker and director finetuned 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 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 awarded the prize mulheres guerreiras 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 and film festivals to an estimated audience of 1110 people finally the film was shown in cine debates in universities and public and private schools in rio to an audience of 1470 people in all between congresses seminars festivals events universities and schools the majority in rio the film was exhibited to some 3370 people health and rehabilitation professionals family members people with disabilities graduate and postgraduate 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 womens university who included the film in her classroom methodology cine debates between health and education professionals 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 scientists 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 health professionals and graduate and postgraduate 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 carers 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 womans 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 shes 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 decisionmaking 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 carers suffering and to give visibility to the matter the documentary is beautiful it shows the family life that we dont see said one professional the film shows one thing over and above the daily events of professional practice and research its one thing for you a researcher to transcribe the mothers voice and then interpreting it but however much you effect the phenomenological epoché and reinterpret the words its you speaking its 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 were 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 dont 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 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 arts 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 historicsocial context 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 indepth learning and new views a number of educators who spoke recognized the importance of the schools and the families participation in the childrens development and inclusive education on the other hand the schools 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 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 its 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 relationships 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 schools responsibility what is the familys 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 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 didnt 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 645 of which were put directly to each of the mothers personalizing the exchanges and the themes the remaining 355 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 womans life everything is very hard because when you are given a special child they dont come with an instruction manual you dont 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 babys 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 womans life starting with the serious condition of a child with a disability 122627 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 youre no longer r youre as mother and thats how the health professionals call you for the treatment sessions as mother and there comes a time when you no longer know yourself you dont 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 littleknown 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 wellbeing coexistence respect family school society and support network from the carers viewpoint the featurelength film contrasts ten life stories articulates various themes perceptions and points of view presents daytoday 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 childs 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 postgraduates 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 couples 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 highimpact technology it evokes indepth 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

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 womens network the feature film a special day was awarded at assim vivemos vi international disability film festival 20132014 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 3370 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 the cameroon anglophone civil society consortium 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 britain were victorious partitioned german kamerun protectorate into two unequal halves the french had fourfifth and the british took a fifth 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 oliphantpicot 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 milnersimon agreement settled the 1916 partition in 1922 the league of nations 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 anglosaxon 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 jn foncha leading kamerun peoples democratic party and emlendeley of cameroon peoples national convention and one kamerun 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 233571 for against 97741 votes for union with nigeria 3 fonchas 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 jc 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 an 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 antigovernment 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 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 constitutions 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 84001 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 profederalist position and a national following 16 the regime crushed outspoken opposition 17 in anglophone cameroon and in 1992 when elections were rigged 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 of 1994 led to the formation of the southern cameroons national council 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 to uphold and preserve their cultural identity especially the anglosaxon 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 20 cameroon general certificate examination board 21 the fear for an eventual elimination of the unique anglosaxon 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 socioeconomic 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 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 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 himherself in the british cameroons and they and their off springs grew up under the british in british southern cameroons and embraced the anglosaxon 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 gwf 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 in 2016 it was a rise up 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 through an outburst of an agitation to change the status quo the cameroon anglophone civil society consortium was the mass mobilization of the people of anglophone extraction of cameroon composed of formal and informal noninstitutionalized 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 teachers associations 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 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 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 parentsteachers association and a cross section of anglophones 32 he went further to say the people demonstrated publicly their wants and desire to have their anglosaxon 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 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 anglosaxon 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 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 12 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 bad governance 40 economic exploitation with southern cameroon territory contributing 60 of the gross domestic product 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 tasangs statement the fight at hand is not a teachers 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 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 illtreatment 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 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 ministers office leader of interministerial adhoc committee to examine and bring out solutions to the issues raised by the striking anglophone teachers trade union 47 ngoh cameroon 1884present 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 20162017 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 proanglophones 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 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 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 2526 november 2016 to discuss with the teachers and it was in the meeting that he rejected atanga njis statement that there was no anglophone problem 59 to him atanga njis position was not the governments 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 lafrique together with top government officials had talks with church authorities teachers 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 acommon 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 adhoc committee of paul ghogomu held another meeting on the 1213 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 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 adhoc 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 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 teachers 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 due to social media gossips ngoh in his book cameroon 1884present 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 governors 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 party and ben muna of alliance for democracy bashed into the conference room of the governors 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 upstation bamenda just to meet another large crowd at finance junction the crowd was also moving to upstation with chants like we no gree oh we no go gree…and by the time i arrived the governors 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 angolas war of independence in african dynamics struggle beyond structure social and historical trajectories of agency in africa mirjam de bruijn rijk van dijk janbart gewald 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 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 2017013 of 23 january 2017 read over the 5pm bilingual broadcast over cameroon radio television 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 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 oclock 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 lawyers right watch canada a nongovernmental 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 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 tipoff 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 ntangtasi 75years retired member of cameroon parliament interviewed at ntamulung 14012020 106 the voice no 155 3 107 the post no 1146 tuesday april 25 20173 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 tchiromas 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 selfdefense 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 detat a la defense 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 teachers 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 adhoc 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

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 anglosaxon 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 governments 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 authors 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 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 andor a fee request permissions from acmieee june 2019 urbanachampaign illinois usa © 2019 association for computing machinery the knowledge online platforms provide about human behavioran area of research known as socialmedia analytics 369 studies in socialmedia analytics tend to focus either on text using approaches such as natural language processing 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 clickbased reactions on the other hand are a relatively underutilized resource in socialmedia research examples of quickdraw readymade 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 24 in this paper we present a new dataset of clickbased 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 clickbased feature we could access through facebooks 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 • clickbased reactions nontextual user interactions with shared contentsometimes referred to simply as reactions includes facebook likes and reactions reshares and page visibility • reactions the five clickbased 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 • reshares the number of times users have reshared 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 jumpingoff 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 15 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 clickbased interactions with which they can personalize their response to content other platforms we considered targeting such as twitter have more limited palettes of clickbased reactions available to users second facebooks enormous population of active users increases the likelihood that content shared there will receive more attention it has about 227 billion active monthly users almost seven times twitters active population of 330 million third the impact of scholarly articles on twitter users has been the subject of many recent studies 5811 whereas the response to this type of content on facebook remains largely unexamined with our list of facebook urls for article shares we queried facebooks graph api 3 for the reaction counts on each post our dataset records their responses and was collected during the period of december 113 2018 constraints in the number of queries allowed by facebooks api determined the rate at which we could work the resulting dataset is publicly available on osf 4 as a commaseparatedvalue file we limited our collection efforts only toward scholarly articles published in 2017 choosing this year accomplished three goals 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 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 24 of all interactions in april 2016 to 58 by june 2016 and up to 128 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 by the time we began our data collection a sufficient interval of time had passed for articles to be widely shared and reacted to of all the articles tracked by altmetric we found 296052 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 135635 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 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 3 4 5 with arrows in the plot limiting the scope of subjects reduced the number of articles needed to process to just over 31000 when we removed articles with missing features such as abstract and title we were left with 11474 articles these are the articles recorded in our dataset in our data collection process we took the utmost care to respect altmetrics and facebooks specifications for how and why their data can be accessed and used and to protect the personal information of socialmedia users our interests are only in the ways that people are interacting in the aggregate with scholarly content on social media platformsnot 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 clickbased 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 sad and angry like and amazed love and reshares 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 an amazed or 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 reshares are correlated with the most other features this might be explained by the fact that these two are the oldest reactionsbut 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 resharing 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 reshared 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 lovewow and sadangry 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 loveangry and laughingsad this makes intuitive sense as these reactions nominally encompass opposite emotions laughingpage visibility is another lowcorrelation 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 underutilized affect our dataset also contains outliers in each feature category to correct for these we rescaled 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 combinationnormalization is displayed in figure 3 rtnorm 3 f i f min f max f min even after transformation our dataset is still sparsezeros 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 nonzero values in those features are all in the fourth quartile likes have the largest interquartile range though the median is still close to zero page visibility and likes have the highest median values of all features supervisedlearning 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 we were interested in finding the extent to which clickbased reactions that are immediately available to table 1 displays the accuracy and area under the curve 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 reshares 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 clickbased 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 clickbased 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 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 reshares 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

research on socialmedia platforms has tended to rely on textual analysis to perform research tasks while textbased 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 clickbased 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 poor perinatal health is a global public health problem and reflects issues of inequality and injustice perinatal deaths include both stillbirth and neonatal death 12 worldwide over 14500 perinatal deaths occur each day 34 almost 99 of them in developing countries among developing countries subsaharan africa and south asian countries record over threequarters of the worlds 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 27 annual rate of reduction in neonatal mortality rate between 20002012 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 1000 live births and 37 per 1000 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 1000 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 subsaharan countries nepals national policies on maternal and child health acknowledge equity rightsbased approaches familycommunity based care womanfriendly 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 medicallyoriented 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 sociodemographic and health service utilisation variables and their distribution across the country 2122 there is little evidence examining the social determinants of poor perinatal health particularly in the countrys most disadvantaged areas the literature suggests that biological events such as pregnancy and childbirth are also socioculturally constructed and therefore we need to understand tradition society and culture and to examine the sociocultural 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 womens 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 2728 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 gods 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 peoples social capitalconnectedness 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 hivaids noncommunicable diseases such as cancer positive mental health and reduced addictionsubstance 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 which could contribute to more effectively planning or tailoring health policy or interventions although the data highlight that perinatal mortality is high in nepals mountainous region 11 no study to date has examined womens and families views about poor perinatal survival within the broader sociocultural contexts studies conducted in nepal mostly cover the plains or semiurban 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 indepth sociocultural 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 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 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 studythe 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 two female community health volunteers two support staff one auxiliary health worker and five other stakeholders 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 the stakeholders comprised local journalists and staff of nongovernmental 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 babys survival and that of the local stakeholders supplemented the data from womens 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 phenomenoncontexts of perinatal deaths the first author is a nepali national with seven years experience as a health worker in nepals 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 experts to ensure consistency in transcription and translation into english nvivo version 1000 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 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 sociocultural 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 religiocultural contexts that describe predominantly the views of acceptance and fatalism about perinatal death and sickness these themes are everyone has gone through it perinatal death as a natural occurrence dewata as a factor in health and sickness a cause and means to overcome sickness in mother and baby and karma bhagya or lekhanta 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 20year old mother with experience of losing her child my grandmother had 10 births 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 havent lost anything my fatherinlaw is also the only surviving son in his family another participant while describing her own and her sisters 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 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 motherinlaw had the same experience and my mother had also lost babies the commonness of the experience of perinatal loss is reinforced further when women and families find local female community health volunteers and health service providers also experiencing similar events that female health volunteer lost a son after birth and the two women over there also lost their babies it is like this here it occurs with everyone 11 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 mothers confinement in gotha is readily acceptable i didnt feel worried about the stillbirth i felt it was okay it rather made me easier to resume my day to day work sooner 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 after birth to keep the main part of the house pure and not to pollute their dewata 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 gods wrath it is not a matter of significant concern when a baby dies before the last month of pregnancy 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 but that was not a death she lost it at six months of pregnancy the concern towards a babys 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 pakhalaliterally translated as a diarrhoeal diseasewhich metaphorically means a nonsignificant common and natural occurrence this perception about foetal death is shown in an interview with a female community health volunteer there are many women losing their babies in pregnancy 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 doctors sisterinlaw lost her baby i know two women there who lost their babies in pregnancy a woman in that house she points to the house had twin babies but both died as newborns poor recordingreporting 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 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 1000 livebirthssimilar to the official estimation of 46 per 1000 as reported in the 2011 nepal demographic and health survey this field visit also revealed an extended perinatal mortality rate of 63 per 1000 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 ratesneonatal mortality rate and the extended perinatal mortality rareare not strictly comparable because the neonatal mortality rate is based on live births but the extended perinatal mortality rate is based on all 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 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 gods 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 21 dewata and childbirth complications seeking faith healers during pregnancy and childbirth gods 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 it is because god was angry with us she cries my family should have called the faith healer and prayed to god gyana they didnt 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 didnt worship god 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 dhamijhakri 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 gods language and can alleviate any kind of suffering including womens 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 speedup 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 gods 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 was ringing a bell around and reciting prayers i had to deliver her by rupturing her membrane they invite us only when they are permitted to do so by the faith healers believing any sickness is a result of gods 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 gods curse 22 dewata after birthseeking and receiving care for babies women and families also attribute their babies sickness to gods displeasure in their daily conversations the range of sicknesses are together called gods wrath 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 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 alleviatecure sickness the type 1 sickness labels in table 1 were attributed mainly to gods 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 mothers lack of breastmilk was believed by one family to be caused by witchcraftevil eye for which they called a faith healer for three days there was no milk secreted from her breasts we contacted faith healers to avoid witchcraft k four faith healers came to our home we could not save him the baby longer he died on 27 th day likewise for another participant her newborn with complaints of vomiting was believed to be afflicted by a ghost and the forest god she lost her newborn baby last year we contacted local faith healers they said the baby was under the influence of a ghost they also told me to pray to the forest god but the baby died early i couldnt even manage to pray to the forest god 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 and astrological hindrance which is the influence of heavenly bodies is also believed to inflict sickness on mothers and babies after her three perinatal losses one interviewee mother described how her family worked to make their god happy to save babies we worshipped to overcome astrological hindrance contacted faith healers 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 alleviatorcure of sickness worshipped the god of my parents home as well as the god of my inlaws home we tried our best to worship and pray to god i dont know why i continue to lose my babies women believe that the unhappy god of their family clan 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 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 of this house is unfavourable to you like they said both my children died at this house they also believe that an angry god can affect people through the hungry dead spirits of the deceased family members or close relatives a motherinlaw described the deaths of her two grandchildren from this cause it was not a sign of luck we contacted local faith healers to offer the spirit yet the baby did not survive nothing worked the health seeking behaviour of families is strongly influenced by their beliefs about gods 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 doesnt work at all if it was due to god and they took medicine it would further harm 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 they seek local herbalists called baiji to overcome sickness particularly when the sickness types are perceived to be taplagne banlagne or mojhlagne 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 they still focus on pleasing god by sacrificing animals and making offerings a baby is perceived to suffer from taplagne when found hot and having diarrhoea or vomiting taplagne makes their body hot and febrile causes diarrhoea vomiting and pneumonia a faith healer who practices both as a faith healer and a herbalist treats baby with local herbs throws holy grains and water over the sick babys body and prays and worships god pastes made from herbs are applied on the babys head and body a sickness is attributed as banlagne 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 experienced herbalists can treat it we need a broom khukuri and a bird feather to worship god to alleviate banlagne when a woman is believed to be suffering from mojhlagne she is considered more vulnerable to continuous baby losses in pregnancy or soon after birth the participants believe that this occurs due to gods 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 23 perinatal losses repeated pregnancies and aversions to family planninggods 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 gods 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 out of her 10 pregnancies her husband shared his fear of vasectomy believing that his family god does not favour it because of our family god the operation vasectomy wont suit me my father had the operation then this didnt work he died when he was just 42 very young he was very young it is to be noted that ongoing perinatal deaths in these areas are also associated with gendered expectations about a girl and a daughterinlaw young girls are viewed to be secure and settled in the inlaws 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 daughterinlaw renders them powerless to decide on how many children to bear and when they are often controlled by their mothersinlaw and husbands about pregnancy and childbirth matters karma bhagya or lekhanta ways of rationalising perinatal deaths according to the oxford dictionary the hindu or buddhist notion of karma is defined as the sum of a persons 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 herhis next life likewise the nearest english translation of bhagya refers to fate similarly the english translation of lekhanta means already written or predestined in these study villages karma or fate as reasons for perinatal death is attached personally to a womans karma or fate it is believed that ones good karma in the past yields good results if one had bad karma in the past the results would be bad which she has to experience during the present lifetime one 35 yearolds 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 this is my karma by bhagya the participants in this study referred to the current state that a woman has been facing and which is perceived as a result of ones karma therefore the word bhagya is often used together with karma a babys death is frequently linked to a womans 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 yearold 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 cant prevent a man dying and a river flowing if the baby is not in your fate she will certainly die look these other children they are here that baby was not in my fate and passed away on the day after birth a womans 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 womans 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 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 babys 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 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 of these babies the rest of our babies survived now they are growing up we have a grown up eight yearold daughter a young boy and a baby girl the belief about destiny implies a complete lack of control over their babies deaths participants likened the babies to a cucumber 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 i dont know it was neither heat nor any other problems with these babies the newborns are like cucumber they could be picked up anytime as per gods plan one god gave it and another god took it away during an informal chat in the village a local faith healer commented that lekhanta 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 the baby dies in the womb if the baby dies before chhaith it is due to lekhanta this is not due to anything related to mother father and family the deaths of babies after birth during a womans 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 babys death when the baby died after seeking help from faith healers discussion this study has examined the religiocultural 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 as a stillbirth or during a mothers and babys confinement after birth until the third postnatal week in this study the womens 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 nonsignificant 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 nonhumans 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 2963 asian 6465 and migrant australian communities 2728 these studies have discussed stigma as one of the key factors making perinatal deaths invisible in communities 96366 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 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 stigmarelated burden is almost nonexistent 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 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 nonhuman and supernatural beings 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 nonhuman agents the study also showed the villagers having their own illness language broadly categorised into two types 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 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 7071 beliefs about perinatal sickness and death due to supernatural forces are also revealed in other studies in africa and among hmong women 316162 what is added from the present study is that not only babys illnesses but also mothers common illnesses birth complications and contraceptive norms are considered to be in gods 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 prepregnancy to postnatal continuum birth complications which require skilled attendance or immediate referral are believed to be caused by gods 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 gods 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 bhagya or lekhanta 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 gods punishment were described as reasons for leprosy by about twothirds of the studys 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 multicountry 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 sociocultural contexts of the events investigated in as the way which the present study has in these nepalese study villages the religiocultural base of womens karma and fate were interchangeably used as reasons for a babys 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 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 babys personal destiny thus feeling helpless in doing anything to prevent the babys 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 webers 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 bhagavadgita 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 individuals authority and will therefore the karma doctrine is described as bringing awareness about ones actions and bringing back cause and effect into hisher control rather than relying on fate or passively waiting for past karma to map out ones 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 ones 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 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 religiocultural 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 religiocultural 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 religiocultural contexts one may argue that the religiocultural 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 with due respect to local culture may be a key to the way forward using a sociocultural lens in reaching care bridging professional dialogues with lay discourses current perinatal survival policy and practices in nepal describe a predominantly biomedical discourse to improve survival with less regard to the evidence regarding local sociocultural contexts in the mountainous regions 12 13 14 15 the policies are influenced by overwhelming national and international evidence on epidemiology and biomedical risk factors of perinatal deaths stillbirths 978 and neonatal deaths 879 the available interventions are largely biomedically 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 to god and rationalise perinatal deaths as karma fate and destiny resulting in the belief that either noone 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 religiocultural context most likely begun as a moral order to instil discipline which became reinforced by faith healing practices the belief in gods 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 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 religiocultural duties such interventions have been introduced in indonesia where trained midwives work in collaboration with traditional birth attendants to attend womens 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 8283 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 hisher general medical history so that any religiousculturalspiritual 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 religiocultural 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 religiocultural 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 familycommunity 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 womens 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 even though the national policy strategies 1213 are aimed at such behaviour change the key biomedical focus of the policy discourse about causes of stillbirths and neonatal deaths is intended to limit the content of behaviour change to conveying the knowledge of danger signs to mothers however this does not link to local understandings of what constitutes danger local religiousfaith 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 illness causation and their rationalisation 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 alone are likely to be much less effective and this could be one of the reasons for its low impact in nepals newborn intervention package 2188 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 studys 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 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 sociodemographic determinants and medical causes of deaths by comparison this study has examined the influence and interactions in sociocultural 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 sociocultural 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 religiocultural 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 religioculturally 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 s will while karma bhagya or lekhanta are perceived as reasons behind perinatal deaths which are religiocultural 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 biomedical 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 faithbased 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

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 provisiontwo mountain villages were chosen for this qualitative study to provide diversity of context within a highly disadvantaged region individual indepth 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 processthree 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 deathsreligiocultural interpretations underlie a fatalistic view among villagers in nepals mountain communities about any possibility of preventing perinatal deaths this perpetuates a silence around the issue and results in severe underreporting of ongoing high perinatal death rates and almost no reporting of stillbirths the study identified a strong belief in religiocultural determinants of perinatal death which demonstrates that medical interventions alone are not sufficient to prevent these deaths and that broader social

replicate all of aforementioned stylised facts simultaneously it also produces social networks that exhibit salient features of realworld networks namely they cannot be 1 introduction conventional modern macroeconomics has long recognised the crucial relevance of expectations and beliefformation for aggregate dynamics in particular beliefs about economic inequality and perceptions of social hierarchy can inform individuals in such diverse fields as consumption decisions redistributive preferences and voting behaviour or subjective wellbeing and ethical convictions even in the most sophisticated behavioural models beliefformation is however typically either assumed to be atomistic 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 we propose a parsimonious networkbased model for the interaction of macrolevel inequality microlevel 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 wellestablished 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 or regional inequality the model is both consistent with several stylised facts about inequality perceptions and the microlevel 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 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 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 direction 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 adhoc assumptions about possible biases eg assuming that individuals tend to perceive themselves in the middle of social hierarchies 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 in essence we assume that agents observe inequality within their local social network and 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 smallworld 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 networkformation 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 smallworld 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 irrespective of their objective status all individuals perceive themself to be in the middle of the social hierarchy as an immediate corollary of poor individuals overestimate their social position rich individuals tend to underestimate it poor individuals tend to perceive inequality to be higher and are closer to objective inequality on average and 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 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 selfperceptions to enable comparisons to the model output in section 4 for stylised fact the data shows the empirical frequency distributions of selfreported income deciles for germany and the us from the 1987 2007 and 2014 wave of the issp group 1 typically germany is considered to be the epitome of a coordinated market economy while the us represents a liberal market economy 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 selfperceptions 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 01 instead the frequencies display a marked peak at the middle categories ie 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 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 ie 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 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 smallworld 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 smallworldiness 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 the empirical research has identified smallworld features across many different social groups including friendship networks in schools corporate board networks and scientific and artistic collaboration given this ubiquity it appears safe to say that a graphgenerating 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 wattsstrogatz model famously able to replicate those smallworld properties since the graphgenerating 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 linkformation is homophilic first introduced by lazarsfeld et al 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 eg for information transmission where homophilic segregation can severely slow the speed of learning or diminish the attention members of minority groups receive the similarity can come in many dimensions such as gender ethnicity or socioeconomic status we focus on the latter in the narrow sense of economic homophily which is empirically wellestablished one strand of literature focuses on friendship networks in schools and colleges and provides evidence significant homophily according to income or social class even one of the earliest contributions in the field however shows that homophily in socioeconomic status is not fixed in time and varies with cultural norms and the importance of class distinctions in light of this result it appears unsurprising that we find considerable variation in implied degrees of countrylevel 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 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 testifying indirectly to the relevance of homophily as a graphgenerating feature homophily in income also exists in social media friendship networks where spatial segregation should not confound findings and becomes apparent in the choice of romantic partners typically under the label of homogamy finally a very recent contribution by cepić tonković for a representative sample of croatian adults finds evidence for homophilic tie formation according to social class and income with however considerable variability in crossclass ties hinting at possible confounding factors we aim to capture with a parsimonious stochastic process importantly cepić tonković show that there is also strong variation in crossclass ties though which we show might be crucial for unbiased individual inference a major predictor is there shown to be crossclass 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 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 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 and iacono ranaldi both derive biased perceptions under very restrictive assumptions though and need to impose some kind of biased averaging knell stix assume that agents form subjective income densities over the whole support of possible income levels but let these densities be selfcentered 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 middleclass bias of stylised fact ex ante and not as an emergent outcome from first principles iacono ranaldi 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 ie 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 we develop on the notion that information is local but assume unbiased processing with skewed information sets as implied by the welldocumented homophilic social network formation on which we expand in section 3 the psychological literature on social comparison theory supports the notion that individual selfperceptions are much more responsive to local knowledge about small groups than to information about aggregates eg knowing the population average 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 with however small and insignificant effects for germany 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 nonnegligible effects on inequality and fairness perceptions as well as perceived social positions 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 demonstrates using a largescale survey 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 find robust evidence for the us and new zealand that individuals base their estimate of average societal income 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 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 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 contentoriented 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 agents social contacts depend on their income we choose this direction of causality for technical reasons and because it seems empirically likely 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 agents 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 income distributions in various industrialised countries for the vast majority of individuals 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 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 prevalidated 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 realworld 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 with typically only five individuals at this closest layer of emotional connection 5the relative weight in the draws are a function of the homophily strength and the respective model income levels thereby agent js weight in agent is draw is denoted by w ij and determined as follows w ij 1 exp ρ i j i i 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 the homophily parameter ρ ∈ is then simply the intensity of choice parameter to translate weights into probabilities we normalise by all weights for all agents ie p ij exp ρ • i j i i k∈m i exp ρ • i k i i with m i as the set of all agents except i with size n 16 this formulation in has a rather intuitive interpretation with ρ 0 implying equiprobable picks with p ij 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 demonstrate that the discrete choice rule above emerges naturally from random utility theory ie 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 is plausibly microfounded in a utilitymaximising framework and can now be considered the workhorse choice rule in behavioural macroeconomics franke westerhoff also survey evidence from a several lab experiments in different macroeconomic contexts that discrete choice is indeed consistent with the data while anufriev hommes and anufriev et al 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 bimodal shape with peaks at the highest and lowest rank but are also heavily skewed to the left ie 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 one must simply replace i i by ln and i j by ln 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 scaledependent tieformation along the lines discussed above our findings from section 4 regarding selfperceptions 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 ie the probability of choosing between j and k being independent of the probability of choosing l iia might be a good firstorder 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 ie 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 gini in contrast to the stylised fact 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 both8 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 which talaga nowak showed to reproduce core features of many social networks efficiently specifically we combine the notions of homophily with presetting node degrees 9 however concerning our application we are able to simplify both approaches by predetermination of only the global minimum degree like in preferentialattachment 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 linkneighbours 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 linkneighbours 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 linkneighbours and divides model this by twice the mean overall income of themselves and all linkneighbours then the overall perceived gini is simply the arithmetic mean of individual perceptions to estimate their income decile an agent compares the number of linkneighbours having a higher income than the agent themself to the linkneighbours 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 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 howactually and howpossibly explanations also known as candidate explanations while howactually explanations aim for identifying the actual mechanism driving the dynamics in a specific case howpossiblyexplanations provide mechanisms that could possibly bring about the explanandum in question they enquire for mechanisms that potentially cause the observed phenomenon in case of epistemically possible howpossibly explanations these mechanisms are in line with the knowledge about the real world our model yields an epistemically possible howpossibly explanation of inequality perception because it produces quantitative agreement with empirical macrostructures as established through onboard statistical estimation routines and also quantitative agreement with empirical microstructures as determined from crosssectional and longitudinal analysis of the agent population simulation outputs of a societal structure close to a smallworld one with selfsegregation of highestincome agents and severe underestimation of the income gini across income levels mirror the corresponding empirical findings following the suggestion by fagiolo et al we use empirical microdata 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 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 eg 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 topincome earners whose isolation increases in the intensity of choice ρ 10 this empirical input calibration and output validation jointly guarantee resemblance between our model and the real world we develop a specific parallel reality 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 howpossibly explanation of inequality underestimation that constitutes epistemic progress on the way towards haes howactually explanations an of the phenomenon the model simultaneously features technical verification and external validation based on input and output measures gräbner considers this combination desirable albeit rarely possible for model development since our model features a range of proposed micromechanisms 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 or stochastic actor oriented modelling framework 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 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 tielevel 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 linkneighbours 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 ≈ 050701 within 15 deviation from the theoretical gini of g 05 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 05 testifying to the robustness of our approach11 smallworldiness we use stateoftheart methods to test for the existence of smallworld features against an appropriate network null model here an erdősrényi graph with the corresponding number of nodes and mean degree first introduced by erdős rényi er graphs appear to be the correct null model for two reasons firstly they are a particular case of our model with ρ 0 ie 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 onetoone 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 wattsstrogatz 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 firstly λ measures the deviation in average path lenghts l that is λ i l i l er i 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 k 12 with γ as eulers constant n as the number of nodes and k as the average degree can be analytically derived which we use in our calculation 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 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 kn with again k as the average degree and n the number of nodes since er graphs typically do not exhibit clustering we require here that γ i 1 for a smallworld to be present finally we use a summary measure φ introduced by humphries gurney we define φ as φ i c i c er i l i l er i γ i λ i humphries gurney show that φ i features desirable statistical properties when confronted with the conventional wattsstrogatz 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 smallworldiness results from the interaction of order and randomness as shown by watts strogatz we require φ 1 for smallworlds 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 smallworldiness and φ 1 with a violation of either results γ 1 or λ ≈ 1 weak smallworldiness 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 smallworldiness the average path length is significantly higher than the er benchmark for all depicted ρ indicating violation of the strong smallworldiness 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 smallworldiness 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 smallworlds and is therfore broadly in accordance with the topological patterns found in realworld social networks we note further the symmetry to the canonical wattsstrogatz approach 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 wellestablished behavioural principle in contrast to the purely stochastic process in the wattsstrogatz 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 ∈ 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 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 wellestablished 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 purely by virtue of the network formation process in contrast to the literature on bounded rationality we can hence show that stylised fact is consistent with purely rational actors that form correct beliefs based on their available inforresults mation as long as homophilic graph formation constrains their information sets our model thus entails very different policy implications to improve selfperceptions since information processing is assumed to be correct in our model information treatments ie 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 05 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 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 of the whole will results always be the minimum of any potential nonempty subset of the population apart from such boundary effects however we indeed replicate stylised fact 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 05 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 increase only linearly in income rank but the reference standard 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 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 overor underestimate actual inequality of g 05 slightly the gini coefficient is conventionally defined as the ratio of 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 but might also correspond with the empirical evidence on perception formation one of the most prominent hypotheses on perception formation from stimuli is the weberfechner law which indicates that perceived differences in stimuli need to be proportional to the baseline of a given stimulus to be recognisable the phenomenon is wellestablished not only for sensory stimuli but also finds use in marketing research on price responses in this framework one can also understand a decreasing perceived gini as the change in stimuli do not increase in the same way as the baseline of stimuli 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 timespan by choi 12 over all countries they find a minimum perceived gini of g min 01276 a mean perceived gini of g mean 01708 and a maximum perceived gini of g max 02534 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 crosscountry 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 ie 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 05 irrespective of its precise parametrisation we use the lognormal 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 as we see apart from implausibly low degrees of inequality changes in actual inequality cause far less than a onetoone 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 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 05 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 onetoone 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 chen et al and tóth et al examine the mechanism directly and show that economic inequality tends to increase segregation a fruitful avenue for further research could be the timescale on which this channel works with more laggard segregation responses obviously decreasing the space for inequalityenhancing 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 ei index ξ i which is defined as the difference between the share of betweengroup links and the share of withingroup links 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 incominglinks 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 ushape 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 nontrivial 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 linkneighbours 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 linkneighbours 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 linkneighbours within their own decile arbitrarily predefined group boundaries can thus create withingroup variability in commonly used indices like the ei index that nevertheless exhibits desirable statistical features at an aggregate level 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 ei 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 whenever dimensions have a cardinal scale like income it might therefore prove more fruitful to use a rollingwindow type of estimation where withingroups 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 nonbiased 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 agents income level and rank 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 cutoff in the exponential selection function at the low end of the income distribution such linkneighbour 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 ones personal network now depends on the characteristics of the agent in question firstly the impact of linkneighbours with great rank differences to the perceiving agent is larger if this perceiving agent and consequently the majority of linkneighbours 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 selfrating and inequality assessment that aggregate to biased underestimation of inequality due to the interplay of factors that feed into individual selectivity in choice of linkneighbours the relation between objective income structure and individual perceptions is nonmonotonic and not trivial but requires casebased assessment discussion our parsimonious model provides an epistemically possible howpossibly 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 linkformation moreover the further away someones income rank is from the global median and the higher their income the more selective they are in their choice of linkneighbours thus public misperceptions are not necessarily driven by limitations in information processing eg 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 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 educating individual citizens about their information deficit and providing ways of overcoming it is important from a democracy theory perspective for example 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 eg 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 modelbuilding 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 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 ushaped pattern with a massive decrease in diversity for the richest and 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 crosscountry 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 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 in this way spatial and perception network segregation might therefore overlap and interact 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 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 barabásialbert preferentialattachment 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 scaletransformation to a logscale delivers the same salient middleclass bias as our baseline specification logtransformations in general strike us as a very parsimonious way to capture scaledependence 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 eg 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 hence we also provide a toolkit for analysing the impact of homophily regarding any specified feature on network generation given a particular distribution of this feature that is wellgrounded in the behavioural economics literature in sum we anticipate our theoretical framework to generate numerous avenues for further studies both theoretically regarding graphand 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 logn log exp log n r d n ρ log n r n ρ n r d n r ρ n r n r d ρ to translate w ij into probabilites we need to normalise by all weights note that this is still a approximation of the probabilities of linkformation of a given node i nodes draw their c linkneighbours 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 linkpartner can therefore be approximated as p ij ≈    n r n rd ρ 1 dr1 n r n rd ρ n r1 d1 n r d n r ρ for d 0 n rd n r ρ 1 dr1 n r n rd ρ n r1 d1 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 with linear decay in d as there exists only a right tail while for r n 1 p ij ∝ 1 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 linkneighbours than the poorest individual choosing their 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 linkneighbour pi can then again by approximated as arg min θ ij i k ∈θ ij i k i i 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 m2 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 m2 1 such that their income distance to k i is less than the income distance from node k i to the node ranked r m2 if i is violated the node with rank r m2 1 is part of the distanceminimising 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 m2 1 such that its distance to k i is less than the distance of k i to the node with rank r m2 in terms of a quantile function we require φ φ φ φ and φ φ φ φ rearranging yields φ φ 2φ φ φ 22 expressing the lefthand side of inequalities for a generic distribution in for an continuous exponential such that rn ≈ p and substituting the quantile function we require log 1 n λ log 1 n λ 2 log 1 λ the condition rn ≈ 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 lefthand side condition in is fulfilled for a quantile function whose first derivative is monotonically increasing which is the case for dφ λ dp 1λ for p ∈ 0 1 and λ 0 we can also show this by manipulation of 23 n r m2 n n 2 1 2 r n r 2 n 2 0 1 n r m2 2 n 2 0 r m2 2 n n 2 0 since r ≤ n per definition condition 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 handside of inequalities is a bit more demanding stating the condition in terms of the quantile function for an exponential we get 2 log 1 λ log 1 n λ log 1 n λ simplifying yields 2 n • n 2 n 2 2 n 2 rn n m2 rn r 2 rm2 n m2 rm2 m 2 4 n r m2 0 n r m2 m 2 4 r n 1 1 2 m n m 2 4n 34 for our discrete sample f λ ≈ rn which reveals that condition is only a slightly more demanding condition than boundary condition 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 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 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 that 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 logscale incomes increase locally linear in rank around the mean income 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 lowincome 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 halfline 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 ≈ rn 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 halfline 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 linkneighbours 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 1s 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 1s 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 ie weights for tieformation are inversely proportional to the absolute distance in log income agent js weight in agent is draw wij is thus determined by the scaletransformation by logarithmising tends to offset the property of the exponential income distribution to exhibit much higher 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 for selfperceptions this implies a middleclass bias per stylised facts and by extension 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 bears enormous consequences for inequality rather than selfperceptions 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 05 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 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 and our results for choice with absolute income differences

across income groups and countries individual citizens perceive economic inequality spectacularly wrong these misperceptions have farreaching 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 networkbased explanation of perceived inequality building on recent advances in random geometric graph theory the generating mechanism can daniel mayerhoffers 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 smallworld 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

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 middlelowincome countries the optimal caesarean section 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 little improvement in facilities for vaginal delivery and increased antenatal indications for cs consequent on improved equipment and technology 3 there is a growing trend in china for cs from 20 in 19781985 to 366 during 20062010 4 a 2011 survey conducted in multiple regions of mainland china found that the cs rate was 545 246 of these were performed in the absence of any medical indication 5 reports from 2014 show cs rates in china of 5490 6 and 585 7 in the united states cs has become the most common surgical procedure the cs rate increased from 206 in 1997 to 315 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 ď72 48 countries 72 191 48 countries 191 273 and 53 countries 273 3 the increasing trend was illustrated by a significant average annual increase in primary and repeat cs rates from 1998 to 2008 in australia 12 socioeconomic 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 but also medical 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 familysocial 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 litorps 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 womens preference health workers should also monitor the influence of different health care models 9 in certain highrisk 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 cs also triggers other socioeconomic 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 160000 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 singlechild 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 research method a crosssectional 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 facetoface 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 in 2455 target interviewers 55 participants declined to answer any questions and the preliminary response rate was thus 9776 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 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 participantspregnant women feeding service social mediaqq group to better understand the needs of pregnant women and give better service for pregnant women we established a social media communication 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 groups members answered pregnant womens questions in a timely manner network communication among team members network communication we used a social media mobile app qq 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 per capita income of the family occupation advanced age for pregnancy chronic diseases hospital level nationality only child husband is the only child marital status pregnancy was divided into three trimesters education level was categorized as ďprimary school junior middle school ěa senior high school and ěsenior college and university 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 31 software data analysis was performed using statistical software 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 chisquare 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 intended to deliver by cs and 585 participants were unsure prior to delivery furthermore 156 expectant mothers in their first pregnancy and 198 expectant mothers in their second pregnancy intended to deliver by cs 346 han nationality and 8 minority nationality intended to deliver by cs 42 in the first trimester of pregnancy and 97 in the second trimester of pregnancy and 215 in the third trimester of pregnancy intended to deliver by cs 263 participants who were advanced in age for pregnancy and 91 participants who were not intended to deliver by cs notes education level was categorized as ďprimary school junior middle school ěa senior high school and ěsenior college and university 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 was a dependent variable we then conducted ordinal logistic regression analysis in the ordinal logistic regression analysis model partial regression coefficient estimate or e ß compared with han nationality minority nationalities were less likely to have cs delivery intention p 00374 compared with expectant mothers in their first pregnancy expectant mothers in their second pregnancy were more likely to have cs delivery intention p 00001 compared with women in early pregnancy women in late pregnancy were less likely to have cs delivery intention p 00327 women with advanced maternal age in pregnancy were more likely to have cs delivery intention p 00001 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 chinas onechild policy our study shows that the preference of the natural childbirth accounted for 598 cs 1509 and not sure 2494 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 than cs however our study indicated that the proportion of intended cs delivery among secondtime 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 preeclampsiaeclampsia 2021 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 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 onechild policy nearly 40 years ago and the cs rate gradually increased the twochild 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 chinas new universal twochild 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 hoursand thus choose cs delivery womens 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 2425 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 womens 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 providers 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 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 redefined the concept of term infants from 39 to 40 weeks 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 3739 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 patients confidence and a positive attitude although cs could effectively reduce the highrisk pregnancy complications and neonatal mortality unnecessary cs should still be avoided for lowrisk deliveries of course patients needs and the precondition of motherbaby safety must be taken into account in decision making to decrease the csection 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 highincome 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 crosssectional 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 facetoface 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 facetoface 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 89 of expectant mothers in their first pregnancies and 336 of mothers in their second pregnancies intended to deliver by cs this study provides more important implications for the control of cs deliveries after chinas new universal twochild 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

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 crosssectional 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 1510 intended to deliver by caesarean section and 585 2495 participants were uncertain prior to delivery 156 889 of expectant mothers in their first pregnancy and 198 3356 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 regressionthreelevel caesarean delivery intention criterion odds ratios p 005 conclusions 889 of first pregnancy expectant mothers and 3356 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

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 subdirectorate 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 350000 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 wifes side the femaleinitiated divorce is called divorce by litigation while maleinitiated 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 wifeinitiated 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 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 5year 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 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 nonexistent 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 someones 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 individuals 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 persons 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 remembering9 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 ie objects that have sharper light are easier to understand than objects that have less sharp light 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 919440 people or 299722 families with a population density of 2012193 people per kilometers the population is spread across 17 districts 75 villages and 933 hamlets with an area of 50686 km from the 17 districts in bantul area banguntapan district has the highest population density namely 4218 people per kilometers it is followed by sewon district that has of 3835 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 wifeinitiated 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 kartinis perspective there are several causes of juvenile delinquency one of which is the theory of psychogenesis11 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 childs 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 societys 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 femaleinitiated 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 womens thinking it gives opportunities for womens 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 femaleinitiated divorces is always higher than maleinitiated divorce although the disharmony of family begins with the husbands 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 husbands 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 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 womens 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

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

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 2428 million people were urgently relocated 120716 thousand hectares of crops were affected and direct economic losses amounted to 23865 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 16248 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 manmade 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 multisubject participation in disaster relief from different angles mainly in the following aspects multiple subjects participate in the scientific research of disaster relief at present the theoretical research on multisubject 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 multisubject participation in disaster relief the second is the multisubject theory multisubject 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 research on the necessity of multisubject 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 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 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 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 wholesociety coordinated disaster relief model is effective 10 in china there is no lack of research on the necessity of multisubject 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 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 12 in addition multisubject participation in disaster relief also plays an important role in providing service supervising the government timely detecting crises and providing countermeasures and suggestions 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 14 research on the advantages and difficulties of multisubject participation in disaster relief in terms of advantages foreign scholar salamon believes that the advantage of social organizations is flexibility which can provide different services according to different needs 15 yan wenhu 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 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 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 also believe that social organizations have difficulties such as unreasonable organizational structure 17 chinese scholar he xiao 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 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 multisubject participation in disaster relief 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 councils 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 peoples 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 multisubject 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 4689 billion yuan 5293 billion yuan in 2020 and 5892 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 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 nongovernmental organizations may voluntarily carry out disaster relief work by donating and providing services and article 8 of the law of the peoples 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 governments 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 18000 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 20000 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 multisubject participation the problems of multisubject participation in disaster relief from the practice of multisubject 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 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 peoples 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 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 the lack of professional knowledge and skills of multiple participants in disaster relief at present the peoples 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 nongovernmental 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 governments disaster relief operations but also causes chaos at the disaster relief site in addition the publics 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 selfrescue 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 multisubject participation in disaster relief countermeasures 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 multisubject participation in disaster relief hebei province can fully learn from the rules and regulations for multisubject 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 twoway 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 improve the information coordination mechanism for multisubject 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 and other channels so as to increase the participation of the public and multiple subjects secondly build a multisubject 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 multisubject information sharing platform to realize the twoway flow of information and data interoperability in disaster relief and ensure the timeliness accuracy and authenticity of disaster information improving the professional level of multisubject participation in disaster relief considering the characteristics of current disaster relief and the existing problems of multisubject participation first the government should fully encourage multisubject 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 selfrescue 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

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 governmentled 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 allround 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 a large number of studies have demonstrated that poor nutrition is disproportionally experienced by those with socioeconomic disadvantage for instance individuals of lower socioeconomic position 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 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 89 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 childrens eating behaviour has received increased empirical focus for instance adolescents who describe their parents as authoritative have been found to have healthier dietary behaviours than those who describe their parents as authoritarian 1516 parenting practices that encompass both direct and indirect communications have been found to influence childrens 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 childs 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 childrens eating behaviours parents food preferences the foods they consume and make available to their children and their restrained eating influence childrens 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 23 the media has also been consistently reported as exerting a negative influence on childrens 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 2425 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 2627 friends and peers have also been found to influence childrens food preferences and eating behaviour for instance a recent qualitative study highlighted parental reports that peer consumption of certain foods encouraged preferences for obtaining and consuming these foods 23 while there is good evidence for an association between various family and environmental influences on childrens eating behaviours the majority of studies have focussed on parent report measures only and on child unhealthy bmi or risk of overweightobesity as the main outcome rather than focussing on obesityinducing 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 procedure in july 2009 mothers were mailed a letter explaining the study and inviting them to participate after receiving the letter each potential participant was contacted by phone 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 participants 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 the child was not present for the mother interview with the participants 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 2045 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 semistructured 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 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 what do your parents do to help you eat healthy the childrens 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 for their child to eat a healthy diet and what they did as parents to influence their childs 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 version six qualitative software program was used to code subcategorize and unify coding of transcript text 34 transcripts were coded to identify motherchild pairs eg 1 and 11 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 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 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 motherchild transcripts that were crosscoded to check for intercoder agreement no major discrepancies in coding or interpretation were observed results the results are presented around two main themes that emerged from the data active strategies from parents to promote healthy eating behaviours and external barriers and supports to healthy eating active strategies from parents to promote healthy eating encompassed four subthemes parental control and moderation support for healthy eating eating rules and parental role modelling external barriers and supports to healthy eating included three subthemes access advertising and friendsfamily each of the above main themes is illustrated with excerpts from participants excerpts from children include their code 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 and to identify motherchild pairs 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 childs 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 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 theres a box of nutrigrain up on the shelf but the kids know that during the week theyre to eat weetbix or something healthier and on the weekend thats a treat for them so its still they still get their treats but in moderation the impact of such parental control of food was clearly articulated by many children for the majority of children food preferences 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 theyre not allowed to have that as breakfast because i consider them lollies because theres so much sugar in them we buy a jar of nutella and its for school holidays my mum sometimes buys chocolate balls which are these round things that are chocolate its actually a type of cereal that were not allowed to have as cereal were just allowed to have them as snacks treats a treat its very rare well i would like icecream for breakfast but i know i wouldnt be able to have that 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 thats 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 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 wellstocked 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 theres 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 its you know off limits with fruit i mean yeah always two or three pieces in their lunch box they usually make healthy food like vegetable soup and when they make food they put in peas and carrots and lettuce 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 im running late for school i havent had breakfast yet or ive still got to have breakfast yes you do have to eat breakfast before you leave you dont skip breakfast you can skip other things if youre running late but yeah you dont skip your breakfast or your tea 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 many children also articulated an awareness of these eating rules the rule is youve got to eat three different coloured vegetables you can choose which three but youve got to have three parental role modelling compared with direct influences on healthy eating indirect influences namely role modelling 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 mum is very healthy dads not completely healthy dads nowhere near as healthy as mum mums always having the healthy food and dads just happy with a sandwich or if hes down the street he might get a pie 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 acted as an environmental support to healthy eating residing in these rural areas for some also resulted in less access to mainstream takeaway options and fast food which mothers reported reduced their childs 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 youve got access to the minimarkets and more of a range i think that were very limited so were going to extend the veggie patch this year yeah weve got lettuce at the moment weve got silver beet in there garlic weve got the herbs out the front and peas yeah we grow it to eat it the school have the stephanie alexander program so they cook and theyve got the garden and they grow everything at school as well and living out here youve 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 yeah seasonal fruit is fantastic and so this area for seasonal fruit is really good its free and its fresh and its off the tree so you cant get better than that a good thing about this region is theres 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 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 theres no lollies or chocolates or chips or anything like that at the canteen anymore its 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 its its pretty healthy im sort of part in there helping out and were 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 actually we both enjoy watching theres 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 thats in season lets get this and try this or if its a new fruit we havent seen we always try to get it friendspeers 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 youre over at a friends house theyll go and get chips or something then ill normally have chips with them my child is in prep and hell see something in someones lunch box and hell 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 im never having that again why not the kids said it was disgusting and they was teasing me i said thats okay you just tell them that theyre 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 to further elucidate potentially effective parentchild 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 childs 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 181921 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 and shared similar attitudes about food and eating these parenting attributes 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 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 foodrelated education the finding that transference of healthy eating education from mother to child was likely internalized by children highlights potential limitations of relying on childrens 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 4041 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 2342 although a number of families in the current study benefited from residing in rural or provincial areas where fruit and vegetables were the towns primary industry and accessibility to larger garden space was more available it is possible that provision of skills and resources for homegrown 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 childrens 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 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 childrens 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 304546 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 childs 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 childrens 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 homegrown produce may also facilitate healthy eating among disadvantaged children conflict of interest statement none declared

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 semistructured interviews were conducted with 38 motherchild 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 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 23 whereby communication is made through a number of channels reducing costs for organizations and improving customer service 4 cc therefore offer various services ranging from problem solving 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 there are over 80000 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 frontoffice or backoffice duties the lack of rewards is compounded by low pay and a high workload which can have a negative impact on employees stress and wellbeing 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 and coworkers 18 can mitigate these negative effects on employees stress and wellbeing in this study the aim is to ascertain the extent to which the different backoffice and frontoffice duties differ both in terms of the psychosocial work environment and the levels of stress and wellbeing experienced by the employees considering the nature of the work of frontoffice and backoffice employees job characteristics social support hr practices worklife conflict workplace attitudes and wellbeing and general wellbeing 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 wellbeing 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 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 wellbeing characteristics of back and frontoffice 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 21 job characteristics according to the jdc model the demands and control job characteristics can explain the stress and wellbeing 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 preestablished 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 81123 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 2021 cc are predicted to be environments characterized by high demands and low control 2310 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 jdc model identifies social support as a third dimension that can influence stress at work 2021 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 228 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 wellbeing and reduce their levels of stress hr practices in the same vein the hr practices adopted by the organization can also contribute to the wellbeing of employees 16 employees perception of job characteristics are influenced by the human resource practices in place 1 which may lead to increased or decreased levels of stress 22 several human resource management models do not focus on employee performance alone 2930 such as the him model which highlights the importance of empowering employees through power information knowledge and rewards while equally ensuring their performance and wellbeing 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 3233 therefore it is important to study a broad range of hr practices and analyze their impact on employees stress and wellbeing 3435 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 wellbeing 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 behavioralsocial 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 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 wellbeing 42 this process fosters the construction and development of the employeeorganization relationship facilitating the sharing of information internal communication and team cohesion 43 while also accelerating the new employees 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 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 preestablished 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 wellbeing 31 this hr practice aligns the interests of the organization with the interests of all its employees 50 contributing to job satisfaction and the wellbeing 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 3412 this practice ensures standardization of the job but can have a negative impact on employees wellbeing 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 leading to an intensified workload 8 moreover there may be additional pressure to meet the preestablished 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 wellbeing 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 wellbeing depend on how the performance assessment data is used worklife conflict according to the role conflict theory 60 an individuals resources are finite and decrease according to the roles they play thus and based on the resource scarcity 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 this implies an investment of their resources 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 wellbeing at work 251 organizational commitment organizational commitment is a psychological state which defines the employees 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 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 wellbeing 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 coworkers 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 their enthusiasm pride and inspiration and also the intrinsic pleasure and concentration associated with the performance of their duties 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 wellbeing 77 and is consequently negatively related to stress 76 however engagement depends on the resources 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 wellbeing 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 dutiesorganization 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 ones 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 wellbeing 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 wellbeing according to johnson cooper and cartwright 82 there is a correlation between job satisfaction and the physical and psychological wellbeing 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 wellbeing 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 worklife balance as they increase employee satisfaction and consequently contribute to their general wellbeing 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 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 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 frontoffice and backoffice employees are presented measures job characteristics job demands and control were measured by means of the job content questionnaire 84 as the portuguese version had already been used in previous studies 85 therefore using a likert scale of 1 to 5 the participants responded to a questionnaire composed of 7 items that analyzed job demands and 4 items referring to the level of autonomy they had at 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 cronbachs α was always above 07 86 the jcq was also used to measure social support 86 through 5 items that analyzed supervisor support and 6 items regarding peer support the participants assessed the extent to which they agreed with each statement using a likert scale of 1 to 7 high scores correspond to a high level of supervisor support and peer support internal consistency rates were 088 and 089 for supervisor support and 086 and 087 for peer support for frontoffice and backoffice 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 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 to 7 recruitment was measured by 4 items presenting a cronbachs α of 080 and 083 for frontoffice and backoffice employees respectively the welcoming and integration process consisted of 4 items and cronbachs α was 083 for frontoffice and 081 for backoffice employees training was analyzed by means of 5 items with a cronbachs α of 091 for frontoffice and 090 for backoffice employees performance assessment was measured by 4 items with a cronbachs α of 088 for frontoffice employees and 091 for backoffice employees finally compensation was analyzed by means of 5 items with a cronbachs α of 088 and 090 for frontoffice and backoffice employees respectively high scores in these dimensions indicate that employees had a more positive perception of the hr practices in place worklife conflict the worklife 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 workrelated 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 ones personal life may occur in two distinct dimensions namely time and stress 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 to 5 cronbachs α for time was 093 for frontoffice and backoffice employees and for stress 094 and 095 for frontoffice and backoffice employees respectively affective organizational commitment affective organizational commitment was measured through the portuguese version of meyer allen and smiths 68 scale used in the study of chambel and castanheira 15 the scale is composed of 6 items that were answered using a likert scale of 1 to 7 this scale also presented good internal consistency since cronbachs α was 088 for frontoffice employees and 090 for backoffice employees wellbeing at work wellbeing 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 3 items for dedication and 3 items for absorption participants responses were measured using a likert scale of 1 to 7 and high scores indicate high levels of work engagement considering the frontoffice and backoffice employees cronbachs α were 094 and 095 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 and 5 items related to cynicism both measured on a likert scale ranging from 1 to 7 as with engagement high scores indicate high burnout levels for exhaustion cronbachs α was 092 for both frontoffice and backoffice employees while for cynicism cronbachs α was 085 and 084 respectively general wellbeing general wellbeing was measured through an adapted version of the general health questionnaire this questionnaire is composed of 12 items and the participants responded using a likert scale of 1 to 4 the scale was subdivided into two dimensions in order to analyze employees stress and wellbeing not in a professional context but on a general level regarding internal consistency cronbachs α showed no differences between frontoffice and backoffice employees standing at 084 in the stress subscale and 087 in the wellbeing subscale data analysis the data analysis was performed through the ibm statistical package for the social sciences 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 frontoffice and backoffice 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 ttest was performed to verify whether the means of the two groups both frontoffice and backoffice were statistically different the cronbachs alpha of each scale was also calculated to analyze the internal consistency finally the intraclass correlation coefficient 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 was calculated to assess the amount of variance in individuallevel responses for each variable that can be explained by variability among the fifteen organizations icc msw 1 where msb is the betweengroup mean square msw is the withingroup 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 005 are considered relevant for aggregation of individuallevel data to a higher organizational level and 020 is considered to be a high level thus it is possible to identify which of the organizations characteristics influence the psychosocial work environment and the stress and wellbeing of its employees results table 2 shows the mean and standarddeviation of the variables in the sample under study and by means of the student ttest the comparison of means between the backoffice and frontoffice 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 wellbeing however it was possible to observe some significant differences between the two groups frontoffice employees show lower values in the perception of autonomy higher values in compensation worklife conflict and exhaustion but lower for general stress thus and although the conditions are similar the results appear to indicate that frontoffice and backoffice duties influence the perception of some job characteristics and the environment and consequently their own wellbeing the intraclass correlation coefficient 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 frontoffice and backoffice may be verified as the number of participants in each organization differed the bonferroni test was conducted for each variance analyzed as far as backoffice employees are concerned some of the job characteristics of the work environment and employees attitudes and stress and wellbeing are observed to present significant differences among the various companies thus these dimensions are dependent on the company suggesting that backoffice work may vary according to the company in which the employee works on the other hand exhaustion worklife conflict and general wellbeing appear to be common to all companies since they do not present significant differences in variance as regards frontoffice duties significant differences in variance in job characteristics work environment and attitudes and stress and wellbeing may be observed however this is not the case for supervisor support work engagement exhaustion and general wellbeing wellbeing 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 wellbeing 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 wellbeing depend either on the duties performed or the companys characteristics discussion this study sought to ascertain whether the characteristics of cc work are inevitable or whether they depend on the duties performed namely frontoffice or backoffice and the companys characteristics it was possible to observe significant differences between the two functional groups frontoffice employees appear to have a more negative perception of autonomy and a greater perception of worklife conflict 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 companys 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 wellbeing levels 19 20 21 however frontoffice employees perceived less autonomy compared to backoffice employees in line with the assumption that the use of scripts that organize and structure the making of calls in the case of frontoffice duties 12 has negative repercussions for control in terms of the planning and organization of the tasks performed 811 when comparing the professionals of these two groups frontoffice 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 workfamily conflict on the other hand this study managed to demonstrate innovatively that stressful characteristics 21 are not inevitable in the context of cc as the data suggests variability among the companies and both backoffice and frontoffice 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 wellbeing levels may differ 219 as the quantitative requirements that are associated with monitoring and performance assessment 1254 and employees autonomy giving them some freedom to plan and organize the tasks they perform 811 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 frontoffice 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 worklife 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 worklife 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 backoffice 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 wellbeing 71 as for wellbeing 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 crosscutting and independent of the company and backoffice or frontoffice duties cynicism conversely appears to be dependent on the company for both backoffice and frontoffice duties this difference may be justified if the development of the burnout syndrome as posited by the conservation of resources theory 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 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 ie 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 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 backoffice duties however it is crosscutting and independent of the organization for frontoffice 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 backoffice duties there appear to be situations where the availability of resources varies thus leading to variable degrees of work engagement while in frontoffice duties the differences in resources are not sufficient to reflect differences in this indicator of wellbeing 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 frontoffice 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 wellbeing it is possible to observe that general stress is dependent on the company and for both backoffice and frontoffice 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 demandresource model 76 burnout leads to different health problems outside the work context as previously mentioned although the levels of exhaustion are common to the different companies their association with cynicism 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 ones work as the levels of exhaustion are independent of backoffice and frontoffice duties and of the company in which one works however the development of burnout and general illbeing 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 worklife conflict 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 wellbeing 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 selfassessment questionnaire was used which was disclosed internally by each companys hr department thus and despite the anonymity of the responses they may contain some level of social desirability secondly as this is a crosssectional study the data refers to a single point in time which does not allow for the establishment of causeeffect 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 andor 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 and respective repercussions for their wellbeing and health conclusions this study provides evidence that the specific nature of the duties performed by contact center employees ie frontoffice and backoffice 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 wellbeing 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 dgc was involved in the design writing and original draft preparation of this paper mjc was involved in the data collection design supervision writing methodology and formal analysis vsc 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 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

it is broadly acknowledged that contact center employees are subject to high levels of stress in this profession there is a distinction between backoffice and frontoffice employees in addition employees may perform duties in various companies with different characteristics ie human resources practices job characteristics social support workpersonal 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 wellbeing 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 frontoffice and backoffice duties influence the perception of some job characteristics and their environment and consequently the stress and wellbeing of these employees furthermore the exhaustion and general wellbeing 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 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 wartorn 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 67 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 1011 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 1213 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 centers in afghanistan and examining risk factors for human rights violations among this population womens human rights in afghanistan the united nations 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 wellbeing 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 genderbased restrictions on womens 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 or no access to health care services occasions in which they were ill and unable to seek medical care extreme fear when in public and extreme restricted social activities human rights violations and mental health problems the harsh realities of living in afghanistan including severe genderbased inequalities and human rights violations have been linked to serious mental health problems among afghan women 89 for instance rasekh and colleagues 7 reported that when afghan women were asked about the 2 years posttaliban occupation most reported a decline in physical and mental health status and a decline in access to health care many women reported symptoms of posttraumatic stress disorder major depression and significant anxiety amowitz et al 8 found that the majority 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 than those living in nontaliban controlled areas there were also higher occurrences of suicide ideation and suicide attempts 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 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 anxiety posttraumatic stress disorder and lower social functioning most of the sample 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 lack of food and water and lack of shelter 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 1213 although documented estimates are believed to be low in 2005 it was estimated that 2 of all afghan women 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 131819 maguet and majeed 20 posit that addiction is a direct consequence of physical and psychological violence related to conflictaffected countries in order to better understand the challenges and problems faced by drugaddicted afghan women this study examines the extent to which women in dat have experienced human rights violations and mental health problems prior to entering the dat centers and 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 inperson interviews were conducted with female participants between 05 days after completing their detoxification process in the dat centers onehundred seventytwo 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 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 2122 the uns universal declaration of human rights 1415 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 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 or whether the communalities are used as the matrix diagonal we examined two three and fourcomponent solutions based on eigenvalues greater than one we chose a threecomponent solution as it was the most substantively interpretable solution and adding a fourth component resulted only in a oneitem 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 were grouped together and termed maltreatment the scale had acceptable internal consistency reliability and component loadings ranged between 083 and 031 the second component accounted for 18 of the variance and the three items represented activities that we termed genderbased inequality this scale also had acceptable internal consistency reliability and component loadings ranged between 082 and 078 the final component accounted for 13 of the variance and the two items represented severe forms of abuse and had an acceptable internal consistency reliability and component loadings ranged between 091 and 089 we ultimately calculated scale scores as an occurrence of any of the behaviors comprising the scale as the distributions of the items were heavily leftcensored 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 mental health factors social functioning measures the extent to which physical and emotional health interferes with or limits normal social activities four items measured the extent and frequency that participants experienced these physical and emotional problems 30 days prior to entering treatment on two scales 0 to 3 and 0 to 3 the four scale items were internally consistent 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 25 participants responded on a 0 to 4 scale suicide attempts was also measured by asking participants if they had attempted suicide 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 or no use here we focused only on opium hashish heroin and crystal 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 marital status ethnicity living situation prior to treatment and whether they had children participants indicated whether they were literate their level of education whether they were employed 6 months prior to entering treatment and whether they had experienced a loss of a close family member due to warconflict within the last 2 years participants rated 18 reasons for entering treatment using a 0 to 3 scale data collection pire partnered with d3 systems inc a social and market research company based in washington dc and the afghan center for socioeconomic and opinion research 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 inperson 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 and backtranslated 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 inperson 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 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 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 1870 years participants were mainly turkmen pashtun tajik or hazara seventytwo 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 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 did not have any formal schooling most of them could not read before entering the dat centers most participants 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 wanting them to go into treatment was very important other reasons considered very important were you decided for yourself that you wanted treatment you had medical or physical problems your friends wanted you to go and spouse or family was shamedstigmatized by drug addiction the most commonly abused substances by participants were opium crystal hashish and heroin 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 or past 30 days 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 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 reported using other drugs asked about on the questionnaire 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 genderbased inequality 36 reported maltreatment and 4 reported abuse 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 selfreport 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 of women entering the dat centers experienced some limitations with social functioning 30 days prior to entering the centers when defining slightlyrarely through quite a bitall the time responses as having limited social functioning additionally a large proportion of the sample 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 were 508 times more likely to report indicators of maltreatment and women of pashtun ethnicity were 580 times more likely to experience at least one of the human rights violations about which we asked women who were literate were 1474 times more likely to report at least one of the human rights violations about which we asked women who were employed were 476 times less likely to report genderbased inequality women who entered dat because of their own desire were 230 times more likely to report being victims of maltreatment 334 times more likely to report genderbased inequality and 291 times more likely to report at least one human rights violation 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 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 allnever 1 slightlyrarely 2 moderatelysometimes 3 quite a bitall 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 onethird 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 2728 about onethird of the women experienced genderbased 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 womens rights have yet to be restored to pretaliban traditions 1626 and the majority of females are still not attending school 29 physical and sexual abuse violations had a relatively low baserate 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 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 onethird of the women 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 and nontaliban controlled areas 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 31335 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 talibanlike 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 genderbased 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 genderbased 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 genderbased 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 als 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 drugaddicted 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 335 because the women sampled had access to treatment it could indicate that these women had greater means resources or support than other drugaddicted 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 womens 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 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 wartorn country where denial of womens 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 cooccurring 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 andor 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 3940 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 womens 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 womens health publish your work in this journal submit your manuscript here the international journal of womens health is an international peerreviewed openaccess journal publishing original research reports reviews and commentaries on all aspects of womens healthcare including gynecology obstetrics and breast cancer subject areas include chronic conditions 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 peerreview system visit testimonialsphp to read real quotes from published authors international journal of womens health 20124

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 inperson 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 ones own desire limited social functioning and suicide attempts conclusions stemming from the results are discussed

introduction healthrelated quality of life is a multidimensional concept that provides a broader perspective of health through conveying an individuals ability to function in physical mental and social domains of life 1 hrqol is thus an essential patientcentred outcome measure that is useful to guide health policies 2 3 hrqol is preferred over other health indicators for measuring chronic disease burden as it incorporates both length and quality of life 4 in south asia chronic conditions 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 longterm complications are not always measured as such although they have a substantial adverse impact on an individuals 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 populationlevel healthrelated quality of life data from south asia using the european quality of life five dimensionvisual analogue scale including three large metropolitan cities in india and pakistan with a large sample size ► 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 crosssectional nature of the data the causal relationship between socioeconomic parameters or chronic conditions and hrqol cannot be determined ► many chronic conditions 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 diseasespecific and generic instruments available to measure population hrqol 4 918 however the eq5dvas is favoured because it is generic not specific to a particular disease and it includes multidimensional measures of health profile in five dimensions and the singledimensional measure vas to summarise overall health status 1 also eq5dvas 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 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 study 19 had collected data on both eq5dvas 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 singledimensional vas across major subgroups methods study design and setting we obtained data from the baseline crosssectional survey of the carrs cohort which recruited a representative sample of nonpregnant 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 or clusters as the primary sampling units using the who steps survey kish method two participants one male and one female aged ≥20 years 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 using standardised techniques and blood pressure twice at each participants home or at a medical camp organised in the community after 5 min in a seated position using an electronic bp measuring device 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 twothree readings were recorded in the study database additionally fasting blood glucose and glycated haemoglobin were measured the overall response rates were 947 for questionnaire completion and 843 for blood tests population health status was measured using the eq5dvas questionnaire which consisted of two components health state description and selfrated health status on vas health state description includes five dimensions mobility selfcare usual activities paindiscomfort and anxietydepression the respondents selfrate their level of severity for each dimension using three levels having no problems having some or moderate problems or being unable to dohaving 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 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 to 100 covariates selfreported age at baseline in completed years was used and categorised into 2024 2534 3544 4554 5564 6574 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 lowincome less than 10 000 indian rupees middleincome 10 00020 000 indian rupees and highincome strata greater than 20 000 indian rupees 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 international classification of ≤179 was used to define underweight 180249normal weight 250299overweight and ≥300 obese lifestyle habits like tobacco use were classified based on selfreports as never former and current user data on chronic conditions consisted of selfreported hypertension diabetes heart disease stroke and kidney disease in addition diabetes was categorised into selfreported newly diagnosed prediabetes and normoglycaemia similarly we classified hypertension as selfreported newly diagnosed prehypertension and normotensive ethical considerations study participants provided written informed consent before participation in the study analysis we used stata v140 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 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 characteristicsage gender marital status and seseducation income and employment status and healthrelated indicatorspresence of chronic conditionswere 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 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 from these a total of 16 287 participants were recruited 5364 delhi and 4017 karachi detailed baseline characteristics of the carrs cohort are published elsewhere 21 22 23 24 briefly the mean age was 424 524 were female 61 completed secondary schooling and the majority of respondents reported household income level 10 000 indian rupees twothirds of the study population had bmi ≥25 onefifth of the respondents reported current tobacco use and 375 had selfreported chronic conditions overall hrqol by age and gender a total of 16 284 study participants completed the eq5dvas overall the percentage of respondents reporting any problems in mobility and pain discomfort was higher than for other domains greater health problems were observed with higher age for both men and women problems with mobility were higher with advancing age however problems with anxietydepression did not show such trend average health status reported by the carrs cohort was 745 women reported lower health status than men of the respondents 74 rated a perfect health profile with no difficulties in any eq5d domain and 006 rated the worst health profile whereby they had difficulties with every eq5d domain the distribution of the vas scores was skewed in the direction of bestimagined health state only 05 respondents rated their health status on vas under 10 and 10 rated it under 50 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 middleincome and highincome groups while it was significantly lower in the lowincome group individuals with higher education and high income had higher hrqol than those with secondary or primary schooling and lowincome class also individuals with bmi ≥1824 kgm 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 nonusers 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 nonusers 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 selfreported diabetes hypertension stroke heart disease or chronic kidney disease reported moderate or severe problems in all five domains 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 paindiscomfort and anxietydepression than in individuals without chronic conditions further a small proportion of individuals with chronic conditions mostly those with hypertension or diabetes 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 in the overall population having any problems in mobility selfcare pain discomfort and anxietydepression were associated with vas scores that were 1012 points lower this inverse relationship of lower vas with higher domain difficulties was larger in men elderly lowincome 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 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 on vas mobility paindiscomfort and anxiety depression were the most commonly reported problems with the extent of these problems differing across population subgroup elderly and women reported significantly greater problems in the mobility pain discomfort and anxietydepression domains the mean vas in our study was 745 which is lower than reported by most western countries but comparable to the results from other lowincome and middleincome countries 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 raceethnic groups and the associated reductions in productivity and income levels may be manifested in these selfreported eq5dvas scores a higher percentage of individuals reported problems in mobility dimension in south asia which is comparable to results from other lmics 29 however problems in anxietydepression are pretty low in south asia when compared with the rest of the world this could be due to underdiagnoses of depressionrelated problems or stigma attached to these health conditions these patterns could also reflect differences in how adults in different parts of the world selfrate 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 cutoff is favoured because individuals with bmi 18 kgm 2 and ≥25 kgm 2 reported greater problems in all five domains although previous studies have shown that lower levels 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 smokingtobacco 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 crosssectional study longitudinal analyses of the independent associations between the smokingtobacco with hrqol may provide a better understanding of this relationship notably one in five individuals living with known hypertension or diabetes 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 reported perfect health states suggesting that these individuals may have adapted to their conditions over time and may be benefiting from treatment and selfcare that improve their selfrated 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 selfrated health status using the european quality of life five dimensionvisual analogue scale of respondents by age groups and gender this figure presents the mean selfrated health status for overall study population by age groups and gender the eq5dvas measures health status on a scale of 0 to 100 p value for difference between mean eq5dvas between men and women at each age group is statistically significant p 001 open access which is consistent with results reported from other studies done in china thailand and western populations 28 3336 since the respondents 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 arthritisrheumatism heart disease hypertension cataracts and diabetes had a negative impact on hrqol in the usa medical expenditure panel survey databased 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 populationlevel hrqol data from south asia using eq5dvas 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 crosssectional nature of the data the causal relationship between socioeconomic parameterschronic conditions and hrqol cannot be determined and is not implied second many chronic conditions 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 selfreported and the study investigators did not examine the accuracy of information however this poses less of a threat to validity because selfreporting 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 selfreported 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 diseasespecific in aggregate form such information could be used to complement national health targets by providing a measure based on health status 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 lowincome 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 differencechange 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 populationbased 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

objectives healthrelated 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 20102011 hrqol was measured using the european quality of life five dimensionvisual analogue scale eq5dvas which measures health status on a scale of 0 worst health status to 100 best possible health status results 16 284 participants completed the eq5dvas mean age was 424 ±133 years and 524 were women 14 of the respondents reported problems in mobility and paindiscomfort domains mean vas score was 74 95 ci 737 to 742 significantly lower health status was found in elderly 641 women 716 unemployed 684 less educated 712 and lowincome group 734 individuals with chronic conditions reported worse health status than those without 674 vs 762 prevalence ratio 18 95 ci 161 to 204 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

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 299 ± 65 years adolescents constituted the least proportion of the women more than half of the women had middle junior secondary school or junior high school education most of the women were married by means of traditional rites and more than half of them were petty traders the mean durations of breastfeeding amenorrhoea and sexual abstinence were 66 ± 28 months 78 ± 38 months and 44 ± 31 months respectively whilst the mean time of first contraceptive uptake was 35 ± 27 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 27 months postpartum and occured at 06 and 36 months before sexual relations and resumption of menses respectively occupation area of residence mode of delivery breastfeeding period since delivery preferred number of children and parity 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 23 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 return to sexual activity 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 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 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 monthbymonth data on contraceptive use or nonuse 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 nonuse and discontinuation if any were obtained from participants at the time of the interview information on sociodemographic and socioeconomic characteristics was also obtained sample size estimation and sampling based on an estimated target population of 4218 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 t 9 where a is given by z 2 p c 2 t estimated target population z z value p proportion of pregnant women who intended to adopt postpartum family planning and c margin of error this implies a 196 2 003 2 1067 and st 1067 1 4218 852 to take care of defaults and late anc registrations respectively 10 the minimum sample size was doubled to 1800 with an additional 10 markup for women who would decline to be interviewed the estimated total sample size was 1980 within the survey period each of the selected health facilities was visited during the days designated for antenatal clinic at the selected health facilities all antenatal registrants 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 of them agreed to be followed up after delivery the other 29 declined follow up for religious sociocultural and personal reasons considering the sensitive nature of family planning within such communities several strategies to further reduce nonresponse 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 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 of the 1359 who agreed to be followed up were encountered twentysix percent could not be traced mainly because of poor address systems in the communities and nonfunctional telephone numbers follow up interviews were carried out from 2nd january to 30th may 2014 these were done via facetoface and telephone interviews using home addresses and telephone numbers provided data management and analysis the data obtained were doubleentered using epidata verified and cleaned the cleaned data were exported into stata for analysis descriptive chi square and logistic regression statistics were carried out to describe the sociodemographic and socioeconomic 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 sociodemographic characteristics of respondents table 1 presents the distribution of sociodemographic characteristics of respondents in this study the mean age of the respondents was 299 ± 65 years majority of the women were in their prime age whilst adolescents constituted the least proportion of the women more than half of the women had attained middle junior secondary school or junior high school education and a little above 8 had no formal education the ethnic group with the highest proportion was fante christians were the majority religious group among the women followed by the muslims most of the women had married by means of traditional rites and more than half of them were petty traders breastfeeding amenorrhoea sexual abstinence and contraceptive use postpartum the mean durations of breastfeeding amenorrhoea and sexual abstinence were 66 ± 28 months 78 ± 38 months and 44 ± 31 months respectively the mean time of first contraceptive uptake following the last birth among women who had used contraceptives was 35 ± 27 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 had breastfed for six months whilst majority had remained amenorrheic for seven months up to a year the period of sexual abstinence among the postpartum women was relatively shorter majority had abstained for periods of one to four months following birth out of the 1003 postpartum women interviewed 505 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 injectables and pills respectively 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 63 months postpartum also the time that 50 of them had resumed sex was 33 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 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 27 months postpartum and occured 06 and 36 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 sociodemographic and reproductive characteristics respectively womens age educational level occupation area of residence and marital status were found to be associated with postpartum contraceptive use however ethnicity and religion of women were not associated with postpartum contraceptive use there was an association between postpartum contraceptive use and resumption of sexual relationship amenorrhoea and breastfeeding table 5 presents the univariate and multivariate logistic regression analyses depicting the unadjusted and adjusted odds ratios of factors that influence contraceptive use all the variables that were associated with postpartum contraceptive use among women were used to construct the univariate and the multivariate models in the univariate logistic regression women within the age group 3539 years were 262 times more likely to use postpartum contraceptive as compared to those within the age group 1519 years women with ages 40 years or above also had higher odds of using postpartum contraceptive as compared to adolescents women with middle junior secondary school or junior high school 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 women living in anomabo and mankessim injectables implants male condoms female sterilization lactational amenorrhoea method periodic abstinence and withdrawal method of all these methods the ones that were used by most women were the male condom injectables and the oral contraceptive pills the least used methods were the withdrawal and lactational amenorrhoea methods 0045 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 engaged and were single separated widowed or divorced 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 compared to women who had complications those who did not have complications had decreased likelihood of using postpartum contraceptive in addition women who were not breastfeeding had twofold of using postpartum contraceptive amenorrhoeic women were 52 less likely to use postpartum contraceptive for a unit increase in the womens preferred number of children their odds of using postpartum contraceptive increased more than twofold for a unit increase in parity the likelihood of women using postpartum contraceptive increased by 19 multivariate regression in the multivariate logistic regression occupation area of residence mode of delivery breastfeeding period since delivery preferred number of children and parity were found to be predictors of postpartum contraceptive use women who were students had higher odds of using postpartum contraceptives women living in mankessim 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 to use postpartum contraceptive whereas women who had caesarean section had 512 times likelihood of using postpartum contraceptive women who did not breastfeed had more than double likelihood of using postpartum contraceptive too early to take a decision about family planning and women wanting to get pregnant soon were reasons given by most of the women 216 95 ci 111421 p 0024 compared to those who breastfed for a unit increase in the period since delivery the women were 089 times less likely to use postpartum contraceptive for a unit increase in the preferred number of children the odds of using postpartum contraceptive increased among women for a unit increase in parity the likelihood of women using postpartum contraceptive increased by 23 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 womens risk of getting pregnant within the extended postpartum period and before the twoyear recommended spacing period after the last birth 1 especially in the absence of contraceptive use traditionally women in subsaharan 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 66 ± 28 this is greater than the mean duration of exclusive breastfeeding in ghana of 39 months and less than the mean duration of any breastfeeding of 212 months in ghana and 204 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 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 78 and 44 months respectively these were shorter than the median durations of amenorrhoea and sexual abstinence for central region and ghana 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 subsaharan 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 2021 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 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 services 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 nonresponse and attrition the rate nevertheless was still very high 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 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 competing interests the authors declare that they have no competing interests

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 299 ± 65 years adolescents constituted the least proportion 33 of the women more than half 541 of the women had middle junior secondary school or junior high school education most 433 of the women were married by means of traditional rites and more than half 514 of them were petty traders the mean durations of breastfeeding amenorrhoea and sexual abstinence were 66 ± 2 8 months 78 ± 38 months and 44 ± 31 months respectively whilst mean time of first contraceptive uptake was 3 5 ± 27 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 27 months postpartum and occured 06 and 36 months before sexual relations and resumption of menses respectively occupation likelihood ratio p 0013 area of residence likelihood ratio p 0004 mode of delivery likelihood ratio p 0001 breastfeeding p 0024 period since delivery p 0001 preferred number of children p 0001 and parity p 0001 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

social class allows for consideration of rarely assessed socioeconomic components includes experiences of societal inequities and incorporates consideration of future prospects 14 8 9 10 together these aspects of sss may uniquely affect healthrelated outcomes through their associations with the psychological and physiological variables that influence health and healthrelated behaviors eg depression and negative affect 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 known as the sssus 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 ssscommunity ladder which asks individuals to rank how they stand relative to others in their selfdefined communities without reference to ses 12 research indicates that respondents tend to primarily consider material wealth occupational status and education in providing sssus rankings whereas everyday altruistic practices were among the highest considerations in providing ssscommunity rankings 12 accordingly the sssus ladder typically demonstrates stronger associations with objective ses indicators than does the ssscommunity ladder 512 for this reason the ssscommunity ladder may be particularly relevant for individuals of lower ses who might not rate themselves highly on the sssus ladder but who have important and influential roles in their communities that would elevate their ssscommunity rankings because the referents and determinants of sssus and the ssscommunity 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 white women results indicated that higher sssus 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 or smoking status in adjusted analyses 5 only a couple of papers published following the ghaed and gallo study used both the sssus and the ssscommunity ladders but with a focus on different health outcomes or nonadult populations for example although not the main objective one study found that leisuretime exercise among adults was significantly and negatively correlated with the sssus ladder and not associated at all with the ssscommunity 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 versus the ssscommunity ladder specifically this study found negative associations between the ssssociety ladder and smoking and drinking behaviors but positive associations between the ssscommunity ladder and smoking and drinking behaviors 14 together these studies seem to suggest that the sssus and the ssscommunity 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 racialethnic groups for example previous studies found that race ethnicity moderated relationships between sss and sleep quality 15 selfrated health 2 and hypertension 10 specifically one study found that the ssssociety 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 sssus ladder were positively associated with selfrated health among white and chinese american women but not african american and latina women another found that ratings on the sssus 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 racialethnic group for example one study found that objective ses measures were not associated with sssus 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 racialethnic 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 sssus and the ssscommunity ladders with multiple healthrelated behaviors in a sample of african american adults enrolled in a churchbased 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 sssus and the ssscommunity ladders would be associated with healthrelated 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 megachurch 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 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 measures participants viewed questionnaire items on a computer screen and entered responses into the computer using the keyboard sociodemographicssociodemographics 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 healthrelated behaviors subjective social statussss was measured with 2 versions of the macarthur scale of subjective social status the us ladder and the community ladder 12 the sssus ladder presents a 10rung ladder to represent where people stand in the united states with higher rungs indicating higher status 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 ssscommunity ladder presents a 10rung 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 community in this study the ssscommunity ladder was administered prior to the sssus ladder per recommendations in the literature 12 the sss ladders have been used in several studies with raciallyethnically diverse participants and have demonstrated adequate reliability and validity eg 231012 the correlation between the sssus ladder and the ssscommunity ladder in this sample was 052 healthrelated behaviorsdata were collected on smoking status atrisk 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 former smoker or never smoker atrisk drinking was assessed with the alcohol quantity and frequency questionnaire a selfreport measure of the average alcohol consumption on each day of the week over the last 30 days 16 males were classified as atrisk drinkers if they consumed an average of 14 drinks per week and females were classified as atrisk 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 fruit and vegetable intake was assessed with the nci fiveaday 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 or not meeting recommendations for daily intake in our main analyses this measure has demonstrated adequate convergent validity with more comprehensive dietary intake measures 1920 and has been used previously among african american churchbased samples physical activity was assessed with the international physical activity questionnaire short format which is a selfreport 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 value which is a metric used to quantify energy expenditure 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 the short version of the ipaq has good testretest reliability and acceptable criterion validity against the computer science applications inc accelerometer 23 finally bmi was calculated using staffadministered height and weight measurements participants with a bmi 16 to 185 were considered underweight those with a bmi 185 to 25 were considered normal those with a bmi of 25 to 299 were considered overweight and those with a bmi ≥30 were considered obese because the number of underweight participants in the sample was very small 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 14 tested the relations of the sssus ladder with smoking status atrisk drinking fruit and vegetable intake and physical activity controlling for sociodemographics model 5 tested the relations of the sssus ladder with bmi while controlling for sociodemographics fruit and vegetable intake and physical activity models 69 tested the relations of the ssscommunity ladder with smoking status atrisk drinking fruit and vegetable intake and physical activity controlling for sociodemographics finally model 10 tested the relations of the ssscommunity ladder with bmi while controlling for sociodemographics fruit and vegetable intake and physical activity if the sssus and the ssscommunity ladders emerged as independently predictive of the same healthrelated behavior followup analyses were planned to examine their relative significance within a single adjusted model analyses were performed using statistical analysis software version 92 significant models were checked for adherence to underlying assumptions and no violations were found results participant characteristics participants were 45 years old on average and slightly less than half reported being married or living with a significant other three quarters of participants reported an annual household income of ≥ 40000 year with the same proportion reporting employment almost half of the participants had a bachelors 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 sssus ladder was significantly associated with total annual household income and educational level but not employment status as expected associations of the ssscommunity ladder and these variables were more attenuated than with the sssus ladder though still significant in the case of income and education but not employment status main analyses the sssus ladder was significantly associated with fruit and vegetable intake β 013 se05 χ 2 734 p 007 or113 and physical activity β 09 se 03 β 2 822 p 004 or109 specifically participants with higher sssus 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 sssus ladder was not significantly associated with smoking status atrisk drinking or bmi the ssscommunity ladder was not significantly associated with smoking status atrisk drinking fruit and vegetable intake physical activity or bmi 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 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 results of these adjusted analyses indicated that both the sssus and the ssscommunity ladders were significantly associated with the number of daily fruit and vegetable servings in this sample sssus β 02 se 01 p 001 ssscommunity β 01 se 01 p 029 however when both sss ladders were included simultaneously in an adjusted model only the sssus ladder emerged as independently associated with the number of daily fruit and vegetable servings β 02 se01 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 in this case a squareroot 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 results of these adjusted analyses indicated that only the sssus ladder was significantly associated with the total minutes of physical activity β 74 se22 p 001 discussion this study was the first to examine the associations of the sssus and the ssscommunity ladders with multiple health behaviors among an african american sample of adults results of our main analyses indicated that only the sssus ladder was uniquely associated with fruit and vegetable intake and physical activity over and above the influence of sociodemographics specifically every 1 unit increase in the sssus 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 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 longterm 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 sssus ladder versus the ssscommunity ladder with healthrelated behaviors the ssscommunity ladder was unrelated to any of the healthrelated behaviors examined in our main analyses moreover even though the ssscommunity 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 sssus ladder thus results suggest the relative value of the sssus ladder versus the ssscommunity 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 white women which found significant associations between the sssus ladder rankings and fruit and vegetable consumption but no significant associations between the ssscommunity ladder and fruit and vegetable consumption 5 our results are also consistent with recent studies finding stronger associations between health outcomes and the ssssociety ladder rankings versus other sss scales using more proximal referents including neighbors 2930 it may be that perceived social status relative to others in a community setting may be less associated with health outcomes and healthrelated 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 3233 in order to examine this possibility we conducted post hoc multilevel analyses that further adjusted our significant models for arealevel ses associations between the sssus ladder rankings and dietary and physical activity behaviors remained significant in these analyses and arealevel ses did not account for a significant amount of additional variance in the outcome thus results suggest that the sssus 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 results suggest that social standing as measured by the sssus ladder may have an important influence on some healthrelated 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 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 health behaviors eg 35 results also suggest that the sssus ladder might be a useful singleitem screener to identify atrisk 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 sssus 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 sssus nor the ssscommunity ladders were significantly associated with smoking status atrisk 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 ones 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 in addition despite the confidentiality of the survey process some behaviors may have been underreported in this churchbased 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 crosssectional design which precludes assumptions of causality in the relations between sss and health behaviors in addition we focused on a convenience sample of churchbased 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 racialethnic 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 atrisk drinking fruit and vegetable intake physical activity and body mass index among an african american sample results support the incremental associations of the sssus ladder but not the ssscommunity ladder with fruit and vegetable consumption and physical activity beyond objective ses indicators results suggest that the sssus 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 welleducated african american church attendees health through md andersons cancer center support grant 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 atrisk drinking was assessed with the alcohol quantity and frequency questionnaire fruit and vegetable intake was assessed with the nci fiveaday 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 not atrisk drinker not meeting daily fruit and vegetable intake recommendations low and moderate physical activity and obese

objectivesto examine associations of the us and community subjective social status sss ladders with smoking status atrisk drinking fruit and vegetable intake physical activity and body mass index among 1467 churchgoing african american adults from a larger cohort studyresultsthe sssus ladder was significantly associated with fruit and vegetable consumption p 007 and physical activity p 005 the ssscommunity ladder was not significantly associated with any health behaviors conclusionsamong this sample of african americans the sssus ladder is more predictive of some health behaviors than is the ssscommunity ladderafrican americans social status cancer risk behavior physical activity fruit and vegetable intake subjective social status sss or an individuals perception of his or her relative position in the social hierarchy has been associated with health status eg124 and health behaviors eg57 independent of objective socioeconomic indicators such as income education and employment status it has been argued that sss functions as a unique predictor of healthrelated outcomes over and above objective measures of socioeconomic status ses for several reasons

introduction youth substance use is common in latin american countries and argentina is no exception youth substance use results from a complex combination of sociocultural biological interpersonal and socioenvironmental factors several studies in europe and the united states have highlighted the importance of family and parenting influences on youth substance use 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 demandingness refers to parental control of childrens behavior indicators of parental demandingness include setting and enforcing clear standards of behavior actively monitoring and supervising a childs activities and maintaining structure and regimen in a childs daily life responsiveness refers to emotional warmth of the parent involvement in their childrens lives and acceptance and acknowledgment of the childs point of view indicators of parental responsiveness include communicating affection providing comfort and being involved in social and academic development and recognizing achievement low parental responsiveness has been associated with lower achievement and higher delinquency and substance use in adolescence with respect to how parenting dimensions are grouped and whether mothers and fathers were studied one recent metaanalysis 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 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 us adolescents with authoritative parents having adolescents with the lowest levels of substance and alcohol use however parenting behavior and its impact on substance use may vary according to the cultural context in which parents and children interact indeed compared to nonhispanic families in the us hispanic families have been described as adhering to collectivistic values that influence parenting practices specifically in research studies collectivistic values related with more parental demandingness and responsiveness 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 in surveying studies of hispanic youth we identified three studies that addressed parenting and substance use in latin american youth one crosssectional study of 860 adolescents in chile examined demandingness for mothers and fathers combined and found a multivariate negative association with tobacco use this study did not report other substance use outcomes another study of 230 adolescents in colombia studied parental responsiveness for mothers and fathers separately and found a negative association between maternal but not paternal responsiveness on externalizing behaviors this study did not measure substance use specifically finally a study of 231 brazilian adolescents used an authoritative parenting measure for mothers and fathers separately and found this to be negatively associated with general substance and tobacco use but not alcohol or illicit drug use thus the literature on parenting behavior among hispanic youth leaves us with an incomplete understanding of how both domains of parenting for mothers and fathers is associated with substance use outcomes among youth in south america the current study the purpose of this crosssectional 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 participated in the study with public schools identified by the ministry of health and ministry of education and private schools identified through personal contacts private schools were included in the sample because 26 of students attend these schools in argentina 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 followup contact for subsequent surveys the questionnaire used anonymous link procedures to allow followup the research protocol was approved by an nihcertified human subjects research board in buenos aires based at centro de educacion medica e investigaciones clınicas development of questionnaire measures the questionnaire included translation of items used in surveys for adolescents previously implemented in argentina mexico and in the us 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 selfadministered 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 outcomeswe assessed substance use using measures commonly employed to assess these behaviors in national surveys of adolescents 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 for illicit drug use participants were asked about lifetime use of marijuana and separately of lifetime cocaine or crack use participants who used either type of drug in hisher life were considered lifetime users independent variables parenting behaviorparenting behavior was assessed with questions on responsiveness and demandingness from jacksons authoritative parenting index using three items for each parenting dimension students used a 5point 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 shehe makes me feel better when i am upset shehe listens to what i have to say and shehe wants to hear about my problems for parenting demandingness the statements were shehe tells me what time i have to be home shehe asks me what i do with my friends and shehe 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 for the mother and another for the father 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 socioeconomic indicators smoking amongst network members peer drinking similar to peer smoking and sensation seeking 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 with responses on a 5point likert scale responses were summed to create an index 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 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 chisquare test was used to test if all the fixed effects parameters were simultaneously zero missing data was less than 1 for all variables except for parental education which was 119 to control for respondent bias we imputed parental education using multinomial logistic regression 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 listwise deletion of missing cases all data analyses were conducted by one author using stata v130 results a total of 3826 firstyear students from 33 schools in three large argentinean cities were invited to participate of these 436 were absent when the survey was implemented 45 had parents who refused their participation and 173 of students refused to participate therefore 3172 students completed the survey the mean age of participants was 128 years 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 for the parental responsiveness index was 422 for mothers and 408 for fathers the means for demandingness were 391 for mother and 366 for fathers table 2 shows bivariate correlations between parenting behavior and the covariates as shown demandingness and responsiveness were associated for both mothers and fathers a negative correlation existed between sensation seeking and mother demandingness and father demandingness finally a negative correlation was observed between age and mother demandingness and father demandingness multilevel logistic regression models were estimated regressing each of the youth substance use outcomes on parenting style and other study variables after adjusting for key covariates mother demandingness was significantly associated with a decreased risk of current smoking current drinking binge drinking and ever drug use father demandingness was significantly associated only with lower likelihood of binge drinking there were no statistically significant interactions between demandingness and responsiveness indices for mother and father separately for any of the outcomes the overall wald chisquare test was significant for all estimated models 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 38 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 our results contrast with studies of authoritative parenting from spain in which responsiveness seemed to be the most important domain in terms of promoting better youth outcomes there in a subsequent editorial garcia gracia 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 or individualistic 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 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 scores for more responsive parents on academic outcomes and lower scores for more demanding parents on substance use outcomes this finding is consistent with the results of the present study another study of racialethnic 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 finally a brazilian study 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 doseresponse relation across the continuum of each parenting dimension and we were uncomfortable with the fourtypology model 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 however it is worth also noting that the correlation between responsiveness and demandingness within parent is moderately strong 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 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 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 overandabove 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 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 in addition maternal parenting dimensions may be more likely in predicting adolescent outcomes because mothers typically spend more time with their adolescents 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 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 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 and have been used in a chilean study 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 crosssectional 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 motherteen 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

backgroundin 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 objectiveto explore whether parenting behavior is associated with substance use among latin american youth methodsa crosssectional schoolbased survey of middleschool youth n3172 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 resultssubstance use prevalence was 10 for current smoking 32 for current drinking alcohol 17 for past 30day 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

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  caseworker delivered intervention were not effective at aiding abstinence  important gains were made in reductions in cigarettes smoked and quit attempts introduction in highincome 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 tobaccorelated 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 13 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 highincome countries suggest that multicomponent interventions incorporating behavioural counselling either facetoface or via telephone motivational interviewing and nrt hold the greatest promise of successfully achieving abstinence amongst some disadvantaged groups but not all 45 delivering comprehensive smoking cessation interventions to smokers who experience disadvantage is challenging as these smokers are often hardtoreach and as a result sample sizes are small 4 5 6 in highincome countries including the uk us and australia community social service organisations 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 89 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 caseworker delivered intervention for a diverse population of severely disadvantaged smokers on verified continuous abstinence at six month followup 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 caseworker delivered smoking cessation intervention 10 the study was conducted in a large community care centre managed by a national nongovernment organisation located in new south wales 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 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 computeradministered general health survey randomisation and masking a computer generated randomisation schedule which was embedded into the computer survey software allocated trial participants in a 11 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 followup 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 printout after they completed the computer survey interventions all participants received onscreen 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 followup 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 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 facetoface sessions and two telephone sessions the counselling sessions were delivered by trained volunteer caseworkers to mirror usual counselling practice at the centre and followed a written intervention manual which incorporated 46 bcts the emphasis was on setting a quit date encouraging use of nrt managing withdrawal symptoms and urges to smoke enhancing selfefficacy social support and prevention of relapse evidencebased strategies were employed to minimise attrition 6 including collection of comprehensive contact information for the participant and a significant other flexible scheduling of followup 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 followup with abstinence defined according to the russell standard 16 prior to unblinding and data analysis this was changed from the original protocol outcomes of 24hour co verified selfreported abstinence and 7day point prevalence selfreported 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 followup 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 at the sixmonth followup visit and that they had not smoked any cigarettes in the week before the followup 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 selfreported continuous abstinence at 1 month followup and at both 1 month and 6 month followup selfreported 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 facetoface and telephone sessions was recorded by counselling caseworkers and participants were asked about use of nrt audiorecordings of 67 counselling sessions were coded for manualspecified bct delivery blinding 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 requires that participants be abstinent at both one month and six month followup 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 sas 94 and stata 13 were used for all analyses and statistical significance was defined a priori as p 005 due to the very small number of participants with the outcome we did not adjust for the a priori covariates specified for inclusion in the analyses 1020 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 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 and selfefficacy 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 intentiontotreat principle 1 multiple imputation 2122 with chained equations to allow for appropriate estimates of variance 2 analysis considering individuals with missing outcome as worst case outcomes consistent with common methods of analysis of smoking cessation trials 16 and 3 using pattern mixture models 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 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 allowing for a 30 loss to followup would have 80 chance of detecting this difference with a 5 significance level results figure 1 shows the recruitment and followup of participants from 7 the control group had a higher completed followup rate 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 separateddivorced or last tried to quit smoking by gradually cutting down on cigarettes figure 2 shows no statistically significant difference between intervention groups in the primary outcome of verified continuous abstinence at six months followup 14 and 10 for intervention and control groups or 077 95 ci 007853 p0828 there were also no statistically significant differences between groups in the secondary outcomes at six months of selfreported continuous abstinence verified 7day point prevalence abstinence and selfreported 7day point prevalence abstinence participants in followup lack of followup was predominantly monotone with 56 returning for six month followup not having attended one month followup age was associated with being missing only in the intervention group and income was associated with being missing only in the control group accepted manuscript a c c e p t e d m a n u s c r i p t sensitivity analyses 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 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 intervention adherence of those randomised to the intervention group 43 did not attend any counselling sessions of those who did attend 22 attended one session 30 attended two sessions 22 attended three sessions 25 attended four sessions and 45 attended all five sessions based on the audiorecording of 67 counselling sessions the facetoface sessions averaged 1809 minutes in length and the average length of phone sessions was 588 minutes in total 128 intervention group participants accepted an offer of nrt analysis of 67 counselling session audiorecordings 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 caseworkers resulted in no higher abstinence rates than no intervention abstinence rates at six months followup 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 which have found low cessation rates and null outcomes for the behavioural and pharmacotherapy interventions 45 the body of evidence emerging implies that these smokers find it difficult to quit even when provided with current best practice smoking cessation aids 45 the current intervention was evidence based with brief advice behavioural counselling and bcts offer of combination nrt social support and followup 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 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 nonfinancial 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 shortterm 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 bestpractice 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 cant quit or who dont 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 sixmonth followup 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 and 51 to the control group a higher proportion consented in the control group than the intervention group 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 consentbe required to return to the centre for three facetoface 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 followup the imbalance in numbers highlights the difficulties in recruiting smokers in disadvantaged groups into smoking cessation trials evidencebased 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 highincome 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 selfreported abstinence rates were higher than confirmed abstinence particularly in the intervention group highlighting the importance of objective verification of abstinence selfreport 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 highincome 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 caseworker 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 deidentified data can be obtained from the corresponding author upon request contributors bb cp cde rw ms conceived and designed the study lt implemented the study and collected the data cde 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 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 conflict of interests bb has received investigator initiated research grants from pfizer and boehringer ingelheim

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 caseworkers methods call it quits was a pragmatic parallel randomised trial of a caseworker delivered smoking cessation intervention conducted in a nongovernment community social service organisation in new south wales nsw australia adult smokers requiring financial assistance were randomly assigned to the fivesession 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 selfreported continuous abstinence up to 6month followup 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 14 in the control group versus 10 in the intervention group or077 p0828 conclusions a multicomponent smoking cessation intervention delivering motivational interviewingbased counselling and free nrt by a trained caseworker 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

background dementia is an agerelated multifactorial disorder and a growing body of evidence reveals that the risk of developing dementia later in life is determined by the cooccurrence of nonmodifiable risk factors and modifiable risk factors across ones 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 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 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 ones 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 riskreducing behaviour 68 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 summarized the evidence of previous surveys on the knowledge of dementia and dementia risk reduction 910 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 910 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 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 middleaged 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 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 semistructured 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 the moderator used openended 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 the focus group discussions were facilitated by an experienced female moderator assisted by a trained female researcher 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 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 atlasti version 81 each transcript was analysed thoroughly and when appropriate a code was generated and assigned by two researchers independently 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 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 120 and 80 of the participants were female the majority of the participants had a high educational level 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 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 cant find the way anymore 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 im a busybody i mean as an informal carer i visit on average two to three times a week so yes that is rather intense 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 alzheimers 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 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 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 some of the participants thought that alzheimers disease is worse than normal dementia a small number of participants even explained the pathology of dementia although hesitantly its to do with proteins in the brain that the transmission of signals is poorer and so on most participants were uncertain about the heritability of dementia im not sure whether it is hereditary or not or perhaps earlyonset dementia is i really dont know 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 nonmodifiable 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 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 didnt give me much information 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 its just a dark cloud hanging over your head 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 cant really hurt maybe there is something in what they say i dont know do something with your life drink less alcohol i dont know but well it doesnt hurt to try 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 selfcontrol 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 thats why i would like to know i am the kind of person who would opt for euthanasia at the final stage finally one participant also mentioned their current cognitive health as a motive to adopt a healthy behaviour for dementia risk reduction id say yes because i forget a lot of things even now i sometimes wonder what i did this morning 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 thats a bit funny i think im only 60 but thats nonsense of course because there were 60yearolds in my mothers nursing home 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 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 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 checkups 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 subsequently participants would like to receive personalized lifestyle advice and not general information that is applicable to everyone i think if its about general things like i just heard about then i think thats 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 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 precontemplation phase and the contemplation phase of behaviour change 15 therefore it is important to incorporate interactions between peers for example groupbased interventions this setting might encourage individuals to participate and adhere to the programme to the best of our knowledge the fing er 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 groupbased 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 12 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 checkups 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 possibility to share information with siblings easily accessible 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 riskreducing behaviour between individuals with and without a family history of cardiovascular disease 2426 however two other studies demonstrated that a family history of diabetes anxiety depression and high blood pressure is positively associated with risk awareness and riskreducing behaviour 2125 the selfperceived risk 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 others 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 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 followup and 2 an online tailormade lifestyle advice regarding protective and risk factors for dementia the outcome of the dementia risk assessment was indicated by the lifestyle for brain health 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 in plain text and spoken animations furthermore the participants received tailormade 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 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 ones 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 peoples 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 competing interests none declared

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 semistructured 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 488 ± 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

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 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 to justify the use of contraception when used within specified parameters for example a renowned islamic philosopher has said that contraception is acceptable as long as it does not endanger the womans 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 decisionmaking 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 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 prophets advice to procreate and the quranic ban on infanticide a common preislamic practice involving born children that was primarily driven by economic and gender factors were both given 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 childrens material spiritual and emotional needs additionally it encourages moderation in all facets of life including conception surah alisra 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 ones children muslims who favor family planning frequently claim that the quran 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 in the verses of the holy quran conservative muslims however like abul eal maududi maintain that the quran is not silent regarding the matter they cite the quranic prohibition of the practice of burying live female infants the killing of infants is forbidden or condemned in the quranic verses which were common in preislamic arabia in addition they cite the following verses to back up their claim that procreation is a gift from god 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 prophets sayings however there are narrations that touch on related subjects the story of jabir ibn abdullah asking the prophet muhammad about the coitus interruptus 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 wifes 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 races 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 doesnt result in permanent sterility or harm to the persons 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 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 ones 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 longterm 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 reported that the practice of solely breastfeeding a child for two years is known as child spacing and it is done for the mothers 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 ones 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 doesnt endanger a womans 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 as explained elsewhere in the paper the somali culture gives priority to the health and wellbeing 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 childrens 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 mothers 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 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 nations supply chain for sexual and reproductive health has been enhanced 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 evidencebased 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 communitybased 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

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 allinclusive reproductive health care

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 wont produce the same negligible incremental change weve seen in recent years 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 twentyfirstcentury organisations will be an indisputable triumph for educational and for that matter socioeconomic 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 twentyfirst 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 has predicted the rapid growth of clusters these are selfgoverned groups of professionals with a range of skills who will be hired by organisations to work longterm 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 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 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 has developed the concept of soft power which relates to persuading people to do what you want by attracting and coopting 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 womens leadership as a sequel to this view tost et al 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 is linked to more productive teamwork however women on average are known to score higher than men on social perceptiveness wooley et al 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 teams 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 technologyenabled 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 highquality 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 powersharing opportunities at work comes with greater sharing of responsibility for children and the home organisations have typically regarded gender issues as womens 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 worklife conflict used to be seen primarily as a problem for women but research reveals that employed fathers in dualearning 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 womens 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 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 now have females as their heads on the face value this does not appear to be an issue but given the longstanding 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 odeitettey and mensah have said that such challenges can be surmounted if society will understand the cosmic logic of the concept of coexistence of opposites the idea is that the world and existence are fully packed with mythic opposition and that has implications for malefemale complementarity in educational leadership this view notwithstanding helterbran and rieg 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 and renders the workplace environment nonwelcoming 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 mens 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 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 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 singleaxis framework that is used to frame antidiscrimination laws with its focus on the experiences of the most privileged members of subordinate groups 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 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 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 persons 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 peoples 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 peoples lives 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 these imperatives of intersectionality in practice are best explained with illustrations that are found in the literature crenshaw has illustrated the concept thus black women sometimes experience discrimination in ways similar to white womens 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 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 socioeconomic disadvantage occupation and careexperience these are identified to eliminate unlawful discrimination harassment and victimisation and to advance equality of opportunity for individuals who are faced with discrimination 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 reinvent 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 coexistence 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 peoples gendered experiences is included in the discourse therefore the study of womens 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 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 despite these challenges some women in ghana have accepted to lead allmale 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 reinventing genders spaces for educational leadership futures objectives of the study the study was guided by the following objectives a to find out the sociocultural 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 sociocultural 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 sociocultural experiences of female managers in male shss and support services and strategies used by females to deal with patriarchal challenges in male shss sociocultural experiences of female managers in senior high schools atta 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 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 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 womens leadership in africa policy makers have also been cited as previously lacking efforts to promote womens progress in taking up high leadership positions so traditional gender roles and sociocultural norms together with the selection process lower womens selfconfidence and career aspirations promoting womens progress therefore calls for cultural change which will require the efforts and cooperation of many authorities organisations and policymakers literature shows that much mistrust in women leadership is caused by a number of factors which include tradition and culture perception of school administration and stereotyped notions about womens leadership literature has shown further that dual and conflicting roles are a major hindrance to women in leadership positions kitele 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 childbearer the woman is expected to take care of the child and put away her career to meet the needs of her family furthermore some african cultures define women in terms of what they should be or do for men for instance a married womans major role is to enhance her husbands 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 beeghly has also noted that womens 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 whereas girls must be feminine soft emotional sweet and submissive these traditional genderrole patterns have been influential in the socialization of children 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 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 womens way of leading enables them to deal with some of the challenges they face as female heads given equal opportunities and cooperation womens 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 which is preferable for todays schools this assertion is confirmed by le 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 taskoriented visionary and participative leadership styles these are types of leadership where the leader consults with the subordinates and embodies their suggestions in decision making 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 attas 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 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 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 sociocultural context of the participants consequently a phenomenological research design was used to carry out the study according to pathak phenomenological research is a study that attempts to understand peoples 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 the research was conducted in 2 public male shss which are headed by females in ghana where patriarchal culture is rife 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 firstand secondyear 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 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 finalyear 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 semistructured 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 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 all participants were told that taking part was voluntary the researchers ensured the participants of anonymity and confidentiality 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 sociocultural 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 sociocultural 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 heads 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 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 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 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 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 womanman 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 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 sociocultural challenges for the female leader the data has revealed that there are sociocultural 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 sociocultural barriers also inhibit female teachers from teaching some specific subjects the interview respondent fh3 said that such sociocultural 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 boys 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 sociocultural 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 secondclass 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 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 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 sociocultural 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 allinclusive 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 extracurricular activities and sociocultural 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 who has said that conflicting roles are a major hindrance to women in leadership positions this is because as the childbearer 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 sociocultural 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 socalled glass ceiling or as the metaphor has recently been recast the leaking pipeline 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 reinvent 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 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 equalityfeminists 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 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 has commented that the international womens 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 genderneutral traits this essentialist view point can be extended to present an unfavourable picture of female leadership gmür 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 goaldirected 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 ie 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 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 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 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 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 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 todays 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 allmale shss have made substantial achievement as a result of the support systems available for example the ghana education services 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 allmale 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 wellorganised 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 wellstructured 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 headmistresss 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 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 inservice 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 confirms this view with his claim that top management support is an important factor that contributes to womens 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 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 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 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 preconceived 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 paintermorland 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 mens 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 senges work on organizational learning and change to karl weicks sensemaking theories 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 speak about communities of leaders while others make reference to distributed leadership or relational leadership an influential definition of systemic leadership is provided by collier and esteban 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 organizations workforce systemic leadership therefore involves a number of different leadership dynamics uhlbien et al 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 gendersensitivity 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 gendersensitive 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 organizations 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 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 uhlbien et al 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 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 detre 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 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 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 this provides the rationale for reexamining 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 mirrors 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 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 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 … to consider the complex relationships and interactions between social locations scottvilliers and oosterom 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 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 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 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 believes that such phenomenon necessitates the adoption of intersectional policy making approach which explores major crosscutting 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 peoples 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 ghanas 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 sociocultural 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 reinvent 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 kaloskinaylor 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… kaloskinaylors 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 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

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 reengineering gender spaces for educational leadership futures data obtained from two allboys 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 peoples gendered experiences is used as the analytical framework the study of womens 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 reinvent 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

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 mexicos 32 states 1 in 2007 firsttrimester abortion was decriminalised in mexico city followed by oaxaca in 2019 the mexico city ministry of health operates a public sector firsttrimester abortion programme known as the interrupción legal de embarazo 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 firsttrimester 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 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 communitylevel characteristics of places ile clients come from and places with no ile clients communitylevel 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 level factors among those who travel from outside of mexico city to obtain abortions in the ile programme we hypothesised that clients who access ile services come from geographically and socioeconomically diverse municipalities that municipalities that are home to ile clients are different from municipalities with no ile clients on key markers of socioeconomic status and we further explore 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 municipalitylevel data from the census our data include all individuallevel 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 we leverage publicly available municipalitylevel data to provide community contextual information for individual ile clients a municipality is a secondlevel administrative division 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 clients municipality code we merged in municipalitylevel information from the most recent available census acquired from multiple publicly available sources thus if two clients came to the ile programme from the same municipality they were both assigned the same value for each municipalitylevel variable nearly 12 of clients 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 as determined by their state of residence but otherwise there were no patterns in missingness of municipality data our outcome is municipalitylevel 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 this index is divided into quintiles where higher values indicate higher marginalisation we also created a binary variable indicating higher marginalisation versus low marginalisation we chose these cutoffs based on the distribution in the data where the majority of clients came from the least marginalised municipalities at the individual level we extracted additional data from the ile client record we included age we chose to cutoff our adolescent category at 17 because women aged under 18 years must have parental or legal guardian consent 13 we included education level marital status occupation number of pregnancies and municipality and state of residence we created a variable to classify states into regions we included the municipalitylevel adolescent fertility rate divided into quintiles and also collapsed into a binary variable indicating high or moderatelow 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 inhome 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 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 we also original research included an indicator of whether the municipality had an adolescent friendly service center which provides adolescentspecific 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 municipalitylevel characteristics of socioeconomic status by whether ile clients travelled from the municipality or not we calculated municipalitylevel averages for the municipalities where ile clients travelled from and did not travel from 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 finally we built a logistic regression model to identify individual and contextual factors associated with presenting for abortion services from a highly marginalised municipality compared with a municipality of low marginalisation we included individual age education marital status and parity as well as municipalitylevel adolescent fertility and region we used stata version 16 for all analyses this study was deemed nonhuman 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 firsttrimester abortion services in the ile programme the majority travelled from the least marginalised and most populous municipalities the largest age group was 1824 years old had a high school or university education and reported to be single the majority of ile clients who travelled to mexico city were experiencing at least a second pregnancy ile clients primarily travelled from the central region they travelled from 491 of 2441 municipalities within all 31 states outside mexico city the majority of clients travelled from municipalities with the lowest adolescent fertility rates figure 1 shows the difference in municipalitylevel socioeconomic characteristics between the 491 municipalities from which ile clients traveled and the average levels from the other 1950 municipalities outside mexico city with no ile clients for example 62 of the municipalities that ile clients traveled from had adolescent fertility in the lowest 3 quintiles compared to 56 of those where they did not figure 1 in our multivariable logistic regression model ile clients who had a primary or secondary education had larger adjusted odds of travelling from a highly marginalised municipality 146 95 ci 135 to 158 controlling for individual factors municipalitylevel adolescent fertility rate and region highlights that ile clients travelling from municipalities with adolescent fertility rates in the top two quintiles and municipalities in the southern region had larger odds of travelling from a highly marginalised versus a less marginalised municipality 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 womens 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 ile clients come from geographically and socioeconomically diverse municipalities and that municipalities home to ile clients are different 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 twothirds 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 13 and abortion clients 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 outoffacility or selfmanaged 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 or a temporary municipality however a key strength of our study is our ability to include the full universe of ile clients 20162019 previous work has relied on samples 2 13 conclusions women who are willing and able to travel to access legal firsttrimester abortion in mexico citys 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 andor 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 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 creativecommons org licenses bync 4 0

objective to describe the community context of women who travel to access mexico citys 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 20162019 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 819 and most populated over 100 000 inhabitants 913 municipalities most 912 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 146 95 ci 135 to 158 and aor 189 95 ci 168 to 212 respectively conclusion ile clients travel from geographically and socioeconomically diverse communities there is an unmet need for legal abortion across mexico

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 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 at the level of society hate speech in social media has contributed to fuel tensions among communities in some cases leading to violent clashes 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 leading to an increasingly alarming antimuslim rhetoric by rightwing populist movements and rightleaning media outlets often conflating refugees and muslims with islamic fanatics this rhetoric has also gained adoption online prompting governmental agencies2 and ngos to call on social media platforms to step up their efforts to address the problem of hate speech the concern is that the increase in hateful narratives online led to an upsurge in hate crimes targeting muslim communities insights into how online expressions of hate thrive and spread can help stakeholders efforts to deescalate existing tensions 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 counterhate 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 nonplatform 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 wellfounded 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 commentsusers twitter volume of tweets unique tweetsusers results query expansion step 3 event selection step 4 impact analysis on time series … expanded query terms original time series conterfactual time series preintervention postintervention figure 1 steps in our analysis framework data acquisition and lexicon creation §3 data categorization §4 events selection §6 impact analysis on time series of hate related terms §5 and results §6 of known hate speech terms 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 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 farright white nationalist 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 on a time series following techniques for causal inference on time series we estimate an events impact on various types of hate and counterhate speech by comparing the behavior of corresponding time series after an event with counterfactual predictions of this behavior had no event taken place the last sections present and discuss 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 counterhate speech given our focus on antimuslim 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 counterhate speech censoring hate speech may clash with legal protections on free speech rights partially due to this tension the position of international agencies like unesco is that the free flow of information should always be the norm counterspeech is generally preferable to suppression of speech thus it is important not only to study hate speech but also to contrast it with counterspeech effortsa rare juxtaposition in social media research magdy et al 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 following the 2016 terrorist attack in berlin and supported by our own results 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 for instance benesch et al found extensive hate and counterhate speech after events that triggered widespread emotional response like the baltimore protests the us supreme court decision on samesex marriage and the paris attacks during 2015 while faris et al 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 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 terrorismparticularly developed after september 11 2001is a key factor behind the increase in islamophobic attitudes a significant increase in antimuslim hate crimes was observed after terrorist attacks by individuals 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 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 this has led to efforts to detect understand and quantify such harmful speech online with goals such as modeling socially deviant behavior building better content filtering and moderation tools and informing policy makers the main categorization criteria for online hate speech has been based on the group being targeted the basis for hate and the speech severity for instance silva et al 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 further discuss challenges in distinguishing between hate speech and other types of offensive speech observational methods applied to social data recent studies show that quasicausal methods can be applied to social media data to eg distill the outcomes of a given situation measure the impact of an intervention or estimate the effect of online social support the application of these methods to social data including propensity score matching differenceindifferences and instrumental variables was found to reduce confounding biases chandrasekharan et al 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 platformspecifica ban on an existing community on redditwhereas we look at the impact of external 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 on various types of hate speech 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 while focusing on speech targeting muslims and islam we similarly combine existing lexicons with terms obtained through a combination of manual and automated steps 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 and hence uses a broad definition of hate and counterhate 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 counterhate speech over a period of 19 months from january 1 2016 to august 1 2017 data sources twitter is one of the largest microblogging platforms used by hundreds of millions every month to collect twitter messages we use an archive representing 10 of the entire public stream known as the decahose reddit is a large social news aggregation platform used by millions every month users submit posts and comments that gain or lose visibility according to upand downvotes we collect posts through reddits search api3 retaining all comments to posts matching our queries news finally we collect news articles from gdelt 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 twitters and reddits apis as our goal was to create a highrecall collection our sampling procedure consists in formulating an initial query followed by an expansion of that query this method is known to improve the coverage of social media data query bootstrapping we bootstrapped our query selection with an initial list of terms used in social media campaigns related to antimuslim hate and counterhate speech this list was assembled retrospectively using news articles and blog posts discussing social media usage during hate and counterhate campaigns4 resources from ngos or governmental agencies tracking or analyzing hate speech on social media and research articles 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 counterhate 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 highrecall collection we considered any new term that may constitute hate or counterhate speech using an inclusive broad definition inspired by silva et al and chatzakou et al and expanded to also cover commentary and counterhate 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 someones 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 hatebase5 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 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 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 125m users the resulting dataset contains on average 45m tweets per month since we used the twitter decahose 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 resulting in an additional 516m tweets by 137m 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 highfrequency terms 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 counterhate speech we queried these terms and retrieved an extra 300k posts with 41m comments written by 31m users finally we queried the external hate terms altogether we collected 337k posts with 45m comments written by roughly 33m users acquiring news data we used gdelts global knowledge graph 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 and characterize them along four dimensions which we then use to analyze the data exploration of postevent 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 antimuslim 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 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 immigrants in general and highprofile individuals 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 illridewithyou indicates one should not be scared to be a muslim one should be scared to be a racist denigrates or intimidates muslim savages brainwash their kids into hating and killing non believers as apes and pigs since really young incites violence stopislam wipe its followers from the face of the earth diagnoses causes the left say look they were not refugees the fact is that this would never happen if we would have banned them suggests a remedy we should deport muslim scumbags and their families table 2 example messages from reddit and twitter for some of the analyzed events provided for illustration purposes messages have been paraphrased for anonymity how is the content framed according to entman four dimensions of online hate speech based on prior work and our exploration of postevent 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 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 introduce a taxonomy for spontaneous expressions of counterhate 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 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 commentary on negative actions or speech against individuals groups or ideas comment on or characterize acts of violence hatred harassment or discrimination 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 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 counterhate speech muslims and islam religious groups unspecified any religion except islam arabs middleeasterners or north africans descent without reference to religion ethnic groups or groups of foreign descent unspecified any foreign descent except arab immigrantsrefugeesforeigners in general without indicating a specific religion or descent and other groups of nonimmigrants based on eg gender sexual orientation appearance disability or age severity international organizations are concerned with how hate speech can lead to violent acts expressions of hate take many forms they can be ambiguous and the perception of what is hateful varies between individuals capturing such subtleties is essential to understanding how severe the repercussions of online hate speech can be for instance the jewish antidefamation 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 intimidates harass or intimidate the target or invite others to do so while actively seeking to cause distress offends or discriminates defame insult or ridicule the target showing bias prejudice or intolerance while actively seeking to embarrass or harm the targets reputation framing kuypers 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 note that framing is critical to understand social movements and collective action it can also operate in different ways for our analysis from test annotations we noticed that two frames were quite distinguishable in the text and complementary8 diagnoses the cause or causes for a problem identifies what creates a problem suggests a diagnose or disagrees with a diagnose suggests a solution or solutions for a problem proposes or defends actions seen as solving or removing the problem 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 thus for annotation purposes we add a catchall 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 we measure this effect by comparing the behavior of an observed time series after an event with a counterfactual time series of its behavior had the event not taken place this synthetic unobserved counterfactual time series is modeled from several observed time series that may be correlated to the treated time series 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 differencesindifferences techniques to time series observed time series we consider time series covering our 19month 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 retweets and one for the number of unique users similarly for the 1257 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 sources9 the observed series in the 11 weeks leading to the event the observed series exactly 1 year before the event for 12 weeks the observed series 23 weeks prior to the event similarly for 12 week10 and external information from twitter reddit and news sources the external information includes time series whose behavior is unlikely to be affected by the events first we use the overall volume of news on gdelt 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 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 the methodology for synthesizing the control follows brodersen et al 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 rather than bayesian methods like markov chain monte carlo preferred by brodersen et al 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 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 that may lead to negativevalued 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 19month observation period done at the term 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 that occurred during our full 19month 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 top5 bootstrap terms 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 incidents and 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 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 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 56 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 blackred are the observed series beforeafter the event green the counterfactual top time series of tweets containing the term after an islamist terrorism attack and an islamophobic attack 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 corresponding to 15 on twitter and 7 on reddit given the recalloriented nature of our collection this supports the observation of faris et al who using a similar taxonomy also observed that the incidence of the most severe cases of hate speech is also typically small preand postfiltering 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 future in general after applying this process we consider there to be effect 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 24 33 15 looking at the intersection of high severity categories with the target categories for muslims and arabs we estimate an increase in the relative effects across events in both platforms also higher than the less severe category 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 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 similarly our estimates indicate an overall increase in counterhate speech terms following islamist terrorist attacks but not after islamophobic attacks this effect of islamist terror attacks on counterspeech is consistent with magdy et al 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 counterhate speech related to religion but not specifically at the eventlevel figure 6 showcases an example of a complex interplay between hate and counterhate 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 us which means it was very prominently covered in media it triggered a substantial increase in terms referring to both islam and the gaylgbt 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 are there differences in how hate speech is shaped by the events across platforms for twitter figure 4 suggests an increase for the highseverity categories 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 immigrantsmuslimsarabs or waging war against islam andor 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 than for reddit 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 and requires a combination of automated processes and manual annotations that balances the needs of largescale analysis with a finite human annotation budget we used data from two social media sites and from two classes of events 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 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 counterhate 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 querylevel 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 indepth analyses are needed finally our analysis is retrospective and harmful content is actively deleted by many social media platforms when reported 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

usergenerated 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 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 one may cite its arts religious beliefs literature manners and scholarly pursuits moreover as counihan and cochrane and bal 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 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 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 in this work we propose a new methodology for identifying cultural boundaries and similarities across populations using selfreported cultural preferences recorded in locationbased social networks our methodology which is here demonstrated using data collected from foursquare consists of the following steps first we map food and drink checkins 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 kmeans 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 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 proposed 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 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 much more often users are searching within broader categories such as sushi based on this information systems like foursquare and other locationbased search engines as the one proposed in 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 locationbased social networks section 4 investigates the cultural similarities between individuals and shows that food and drink checkins outperforms checkins 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 locationbased services such as foursquare 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 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 presented a model to extract distinct regions of a city according to current collective activity patterns similarly noulas et al 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 investigated color preferences in pictures shared through instagram showing considerable differences in the preferences across countries with distinct cultures garciagavilanes et al and poblete et al studied variations of twitter usage across countries in particular garciagavilanes et al showed that cultural differences are not only visible in the real world but also observed on twitter crosscultural studies 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 despite globalization and many other technological revolutions group formation might lead to the emergence of cultural boundaries that exist for millennia across populations axelrod proposed a model to explain the formation and persistence of these cultural boundaries which are basically a consequence of two key phenomena social influence and homophily 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 facetoface interviews such as the eurobarometer dataset through these questionnaires individual preferences such as the taste for coffee and fast food can be mapped into multidimensional vectors representing 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 ie 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 the entire world to be collected 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 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 mdimensional vector of preferences f i f 1 i f 2 i f m i that characterizes the persons tastes the same type of vector that is usually created from survey data 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 01 represents whether user n i has or not preference f k 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 persons data ie 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 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 checkins are not publicly available by default approximately 47 million tweets containing checkins 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 checkin consists of the latitude longitude identifier and category of the venue as well as the time when the checkin 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 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 and moving some subcategories 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 279650 checkins 106152 unique venues and 162891 unique users the fast food class with 410592 checkins 193541 unique venues and 230846 unique users and the slow food class with 394042 checkins 198565 unique venues and 231651 unique users moreover the drink class has 21 subcategories whereas the fast food class has 27 subcategories 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 256000 interviews observe that our oneweek 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 facetoface interactions or online signals to discover the presence of those hidden qualities in this direction a lbsn checkin can be considered as a signal because it is a perceivable featureaction that expresses the preference of a user for a certain type of place with that in mind we use foursquare checkins to represent user preferences regarding food and drink places specifically we use the three main classes defined in section 32 namely drink fast food and slow food figures 1a1b and 1c show the frequency of checkins 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 peoples preferences worldwide note that coffee shop and bar are the two most popular subcategories of drink places with 86310 and 81124 checkins respectively the two most popular fast food subcategories are café 3 and fast food restaurant with 91303 and 56648 checkins respectively finally american restaurant and mexican restaurant 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 checkin 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 and users actions are mapped into this set to associate a user with a location we analyzed the gps coordinates of all checkins performed by the user if all checkins 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 33 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 where s is a similarity threshold used to build the network vertices v s represent the set of users and an edge exists in e s if users v i and v j have a similarity score above s the similarity score s ij between two users v i and v j is the jaccard index between their preference vectors 5 multiplied by 100 in this way s ij 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 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 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 ie only checkins at food and drink places on the other hand g 2 s consider all preferences ie all foursquare subcategories including food and drink venues to build both networks we consider only the users who performed at least 7 checkins in the dataset in total 28038 users were considered in g 1 s and 194902 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 in the two largest components of the network g 1 s for various values of s 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 in an assortative network vertices with similar values of the given attribute tend to connect with each other whereas in a disassortative network 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 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 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 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 preferencesfeatures we also increase the number of features that do not discriminate cultural differences sufficiently well 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 and temporal 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 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 checkins 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 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 that is we normalize the number of checkins at each subcategory by the maximum number of checkins performed in a single subcategory in area 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 ie 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 pearsons correlation coefficient between the two feature vectors f a and f b of those areas we compute the correlation considering all features as well as a subset of them in particular figure 3 shows the correlations between areas corresponding to 27 different popular countries for the drink fast food and slow food classes the darker the color the stronger the correlation the same correlations computed for city level areas are shown in figure 4 analyzing the results for the drink class 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 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 this is not observed in the same intensity for the slow food class 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 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 citys 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 cells to show the potential of the proposed analysis however our approach can be applied to any other segmentation of the city areas figure 6 shows the correlations for pairs of cells within 7 the ratio of checkins per inhabitant is similar among all the cities taken into consideration for example comparing manaus with sao paulo we find the following ratios 035 × 10 3 and 037×10 3 073×10 3 and 075×10 3 and 054 × 10 3 and 071 × 10 3 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 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 eg ny3 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 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 ny7 and ny8 are par ticularly not correlated with the others from this city this is probably related to the location of chinatown in those areas indeed this particular area has a strong correlation with a particular area of london lnd5 where chinatownlondon is located temporal analysis we now turn our attention to the temporal and circadian aspects of cultural habits the time instants when checkins 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 checkins per hour during the whole week covered by our dataset in venues of each class for different regions next we group days into weekdays and weekends summing up the checkins 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 and for three american cities 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 in contrast brazilians tend to have significantly different temporal patterns particularly in terms of activities in slow food places 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 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 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 checkins at slow food places on the weekends and it is similar to the one observed on weekdays this is possibly because such places have welldefined opening hours serving meals around lunch and dinner times only which coincide with the times of checkin peaks 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 checkins at different types of places we also compute the shannons entropy of preferences for each venue subcategory among all considered areas the goal is to analyze whether the checkins at specific subcategories are more concentrated at specific areas or not we compute the entropy for subcategories of each class at country and city levels the average entropy for subcategories of the drink class is 323 for countries and is 388 for cities sake bar is one example with low entropy 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 263 this higher entropy reflects the widespread popularization of various cuisines for example a checkin 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 note however that if the checkin 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 52 time plays an important role in this case given these considerations and all the observations reported here we propose the use of spatiotemporal correlations of checkins 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 socalled 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 checkins 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 technique to these vectors to obtain their principal components8 finally we use the kmeans 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 colorsymbol in those figures indicates a cluster obtained by kmeans which used the p first principal components that explain 100 of the variation in the data the k value in the kmeans varied according to the characteristics of the considered areas for countries we set k7 following the same logic we set k4 for cities since we considered cities from 4 different continentscountries and k3 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 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 and the dimensions computed by our approach then we compute the spearmans rank correlation coefficient ρ between these two ranks to see for instance if the most similar 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 checkins performed during the weekends9 table 1 shows these results we highlight in bold all the coefficients which are statistically significant ie with a pvalue 005 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 multiethnic 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 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 checkins extracted from foursquare into users cultural preferences considering spatiotemporal 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 largescale 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 locationbased social networks like foursquare to improve their current recommendation systems

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 crosscultural 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 checkins 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 checkins 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 eg 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 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 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 it is lowand middleincome 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 1314 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 andor 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 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 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 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 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 network1anetwork5k representative code name for each participating network in the study data collection data were collected on gender ses anthropometric measurements and contacts in participants social networks at school between march and december 2015 nursing staff trained in this procedure collected the study data in paperbased 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 provided by the nursing and physiotherapy department of the university of león and electronic fagor slim scales spain calibrated to zero for each measurement variables gender was considered a dichotomous variable ses was evaluated using the fas ii questionnaire 3031 which assesses the familys 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 mediumlow ses group thus creating a dichotomous variable consisting of high and mediumlow ses once each participants weight and size data had been collected we calculated the percentile and body mass index according to exact age and gender using the whos anthro plus®application 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 which we termed overweight to obtain data about social network contacts 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 1833 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 5point likert scale where 1 we never spend time together and 5 were always together 2635 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 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 were created from the initial matrix based on three dichotomization criteria a minimum contact matrix an adjacency matrix where the original value of 1 represented the absence of contact and the values 2 3 4 and 5 indicated the existence of the same an intermediate contact matrix where the values 1 and 2 indicated the absence of contact and the values 3 4 and 5 represented the existence of a tie and a maximum contact or friendship matrix where the values 1 2 and 3 indicated a lack of contact and 4 and 5 represented the existence of a relationship for each contact intensity matrix an analysis was conducted of the seven parameters representing social network centrality 36 from a sociocentric or global perspective outdegree indegree degree 36 closeness 3738 betweenness 3738 and the eigenvector 39 this analysis yielded 21 normalized variables 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 with a confidence interval of 95 statistical significance was established as p ≤ 005 statistical analyses were performed using spss v23 ibm armonk ny 10504 usa and network contact data were calculated using ucinet v6365 40 results descriptive data for the sample indicated that 494 were female and 506 were male participants ages ranged from 140 to 181 years old with a mean age of 155 ± 09 years old mean bmi was 221 ± 29 kgm 2 and the mean percentile value was 648 ± 241 in line with who criteria 29 the prevalence of overweight was 255 and of obesity 47 indicating a total prevalence of overweight of 302 regarding ses the mean score obtained using the fas ii questionnaire was 63 ± 16 corresponding to a high ses as can be seen in figure 1 29 of the adolescents presented a mediumlow ses and 711 a high ses an analysis of the relationship between ses and overweight indicated that students with a mediumlow ses presented a twofold higher probability of being overweight results descriptive data for the sample indicated that 494 were female and 506 were male participants ages ranged from 140 to 181 years old with a mean age of 155 ± 09 years old mean bmi was 221 ± 29 kgm 2 and the mean percentile value was 648 ± 241 in line with who criteria 29 the prevalence of overweight was 255 and of obesity 47 indicating a total prevalence of overweight of 302 regarding ses the mean score obtained using the fas ii questionnaire was 63 ± 16 corresponding to a high ses as can be seen in figure 1 29 of the adolescents presented a mediumlow ses and 711 a high ses an analysis of the relationship between ses and overweight indicated that students with a mediumlow ses presented a twofold higher probability of being overweight regarding reticular data several density and centralization measures were calculated for each of the studied networks 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 in contrast a statistical analysis of the overall sample irrespective of weight status revealed significant results at all three levels of contact intensity at the minimum contact level adolescents with a high ses were almost twice as likely to present a greater capacity for intermediation regardless of gender by way of illustration node size in figure 2 represents the capacity for intermediation 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 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 was twofold higher in adolescents with a high ses we obtained similar results for male adolescents regarding reticular data several density and centralization measures were calculated for each of the studied networks 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 in contrast a statistical analysis of the overall sample irrespective of weight status revealed significant results at all three levels of contact intensity at the minimum contact level adolescents with a high ses were almost twice as likely to present a greater capacity for intermediation regardless of gender by way of illustration node size in figure 2 represents the capacity for intermediation 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 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 was twofold higher in adolescents with a high ses we obtained similar results for male adolescents 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 mediumlow 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 6811 41 42 43 one explanation for this finding may be the influence ses exerts on the purchase andor consumption of certain food products 121344 for example the high price of healthy products 4345 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 4446 it has been shown that a low educational level in parents is related to the development of obesity 104142 family structure 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 4648 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 1549 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 lowtraffic 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 mediumlow 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 mediumlow 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 6811 41 42 43 one explanation for this finding may be the influence ses exerts on the purchase andor consumption of certain food products 121344 for example the high price of healthy products 4345 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 4446 it has been shown that a low educational level in parents is related to the development of obesity 104142 family structure 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 4648 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 1549 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 lowtraffic 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 peoples 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 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 5758 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 selfesteem 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 446 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 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 6365 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 636667 supplementary materials the following are available online at 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 benítezandrades formal analysis natalia arias josé alberto benítezandrades and beatriz alonsocortés investigation maría dolores calvo maría josé álvarez and carmen benavides methodology natalia arias beatriz alonsocortés and carmen benavides resources maría dolores calvo and maría josé álvarez supervision maría dolores calvo validation josé alberto benítezandrades writing original draft natalia arias josé alberto benítezandrades maría josé álvarez beatriz alonsocortés and carmen benavides funding this research received no external funding

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 crosssectional 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 mediumlow ses presented a twofold higher probability of being overweight but we did not detect any differences in the configuration of their social networks when compared with those of normalweight 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 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 chronic diseases 2 prevent vascular diseases such as cardiac disease and stroke 22715 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 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 ones close and distant social networks 823 social supports can promote better health by providing a sense of belonging and building selfefficacy 6 social technology has been shown to increase social support for individuals afflicted with a particular condition such as acl 25 als 13 and menopause 36 furthermore the social dynamics for peer involvement in weight management include supportive relations and passive involvement and observed patterns of interaction such as 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 2933 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 1719 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 7215 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 4week 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 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 selfefficacy to changing health behaviour 34 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 individuals knowledge of and expectations of outcomes related to the health risks and benefits of different health practices 2 perceived selfefficacy is an individuals own competence to perform the behaviour needed to influence outcomes and the individuals ability to exercise control over ones health habits perceived selfefficacy 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 subtradition 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 computermediatedcommunication 3411 and the internet 30 it has also been applied to online communities 1119 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 1119303517 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 301119 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 1117 and is also linked to social utility 35 and interpersonal utility 30 3 maintaining interpersonal connectivity pertains to sustaining contact with ones social networks 1119 and it also relates to social utility 35 and interpersonal utility 30 or as joinson describes as social connection 17 4 selfdiscovery occurs when selfknowledge is obtained through social interaction 1119 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 1119 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 and duration of the evaluation application name description evaluation stepping up for health 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 pictures 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 fishnsteps 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 chickclique 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 ones 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 stepcount 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 na 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 fishnsteps 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 chickclique 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 ones 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 usercentered design process initially with paper prototypes that were evaluated using oneonone interviews with 11 people and then with a mediumfidelity prototype that was evaluated in a laboratory with 36 people 18 these studies revealed that the vivospace design allowed for greater understanding of ones health behaviour but social gaming features were needed to build motivation to use the system finally this highfidelity prototype was tested with seven individuals using a cognitive walkthrough prior to the field study described in this paper the high fidelity prototype was developed using php and mysql within the codeigniter application framework twitters® bootstrap was used for the user interface elements and doctrine php libraries were used for the database abstraction layer furthermore vivospace incorporates wolfram alphas® application programming interface 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 crowdsourced fig 2 left the nutritional content of a meal is displayed when the logged meal is clicked right goal details show the users and participating friends 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 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 the shared log entries allow for commenting between the individuals in the users 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 users 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 vivospace also provides the following gamification features users earn small experience points 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 we evaluated vivospace in a field study with three separate social networks in both canada and the united states this studys 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 selfefficacy seeing historical log entries and charts of nutrients consumed on the dashboard shows ones 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 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 ones 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 ones friends 2 visibility into the shared meals of ones 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 selfdiscovery 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 friends entries convenience obtaining the nutritional value of foods and caloric expenditure of physical activity and having a historical storage of ones nutritional information provided convenience of access to information shared identities through the sharing of ones 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 nonclinical 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 clinics 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 4week 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 medicalgroupvisit 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 nonclinical group of participants was a closeknit 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 nonclinical group as they were not associated with a wellness or integrative medical clinic and we used the results from the prequestionnaire to evaluation their health without vivospace a total of 35 participants were recruited from three groups chicago clinic vancouver clinic and the nonclinical group from the vancouver gaming company 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 nonclinical group were younger than those from the clinics and this group ranked their health better than those from the clinics 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 prequestionnaire prior to the start of the study and postquestionnaire after the 4week study period the questionnaires both had the following 1 current health behaviour 2 knowledge test of nutrients and 3 5point likert questions that linked back to the factors from the social cognitive theory the postquestionnaire for those participants that used vivospace also included the following 1 5point likert questions that linked back to the factors from the uses and gratification theory and 2 openended 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 preand postquestionnaires the first set of questions that inquired about health behaviour included questions about height and weight to obtain a bodymassindex 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 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 92123 the transtheoretical model defines the stages of change as precontemplation contemplation preparation action and maintenance 32 the second set of questions was a 10question multiplechoice 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 5point 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 selfefficacy for eating nutritious foods stated i am capable of eating highly nutritious foods and resisting unhealthy foods the 5point likert questions ranged from strongly disagree to strongly agree the postquestionnaires for those participants in the experimental group also included 5point likert questions for the eight factors from the uses and gratification theory the postquestionnaire 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 selfefficacy another 5point likert statements inquires concurrence with i was able to learn about my capabilities by logging my meals on vivospace the openended 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 selfreport 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 preand postquestions as well as qualitative analysis of openended 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 nonclinical group used it more than those from the chicago clinic which can likely be attributed to this groups 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 participants perception of use based on the eight factors from the uses and gratifications theory the results of the 5point likert responses for all three groups are shown in table 5 the strongest factors for motivating use were to provide information and selfdiscovery 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 267 for the nonclinical group the qualitative responses showed that they did use it to receive information for example i liked watching my vitamin consumption over time 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 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 vivospace this user had some mistrust in the nutritional and energy expenditure information that was provided by vivospace im 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 with respect to selfdiscovery she said it was interesting to be accountable it made me think more about it perceived selfefficacy a central concept to the social cognitive theory is perceived selfefficacy the paired ttests for all groups showed a statistically significant increase between the preand postquestionnaires 5point likert scale inquiry into ones selfefficacy the greatest increase was observed for the chicago clinical experimental group and the smallest increase was observed for the nonclinical group however these results need to be taken with caution as the control group from the chicago clinic also showed an increase in perceived selfefficacy which perhaps means that there were other factors contributing to the increase in selfefficacy such as association with the chicago clinic for those using vivospace we also inquired about the aspects of vivospace that contributed to their selfefficacy 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 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 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 systems 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 ones information on vivospace takes time 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 and nutritional information regarding foods i was eating helped push me to keep cooking those foods or avoiding other foods changes in health behaviour there was health behaviour change observed between the preand postquestionnaires 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 10 for the nonclinical group the number of servings of potato chips consumed in a week went down with a mean difference of 056 for the clinical group 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 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 selfefficacy the greatest increase in selfefficacy was observed in the chicago clinical experimental group which suggests that the process of logging meals and physical activity does build selfawareness 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 ones 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 ones 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 nonclinical 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 nonclinical group and the group from the chicago clinic saw observable changes in health behaviour furthermore both clinical experimental groups saw the greatest increase in selfreported selfefficacy the chicago clinic experimental group showed greater social motivation to use vivospace compared with the nonclinical 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 4week 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 closeknit nonclinical 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

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 nonclinical 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 many migrant physicians 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 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 wellbeing and worklife sustainability 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 specialtys 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 81014 moreover lowstatus specialties such as general practice psychiatry and geriatrics usually suffer from staff shortages 810 13 15 the hierarchy of medical specialties has previously been analysed and discussed through the lens of bourdieus concepts of social field symbolic capital and habitus 810 a social field is constructed by a group of individuals and institutions with joint interests that are struggling over resources by gaining capital recognized as symbolic capital individuals are hierarchically positioned in relation to one another 8101617 the medical labour market can be understood as a social field 810 or more specifically the medical field 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 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 14 similarly career advancement in underserved specialties might be easier for mps in ireland where access to postmedical 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 235 underserved areas refer to types of sector medical specialties and geographical locations 2021 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 wellbeing 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 in general practice 15 making it the largest medical specialty physicians specializing in general practice and working as general practitioners make up the largest employee group in phc in sweden staff shortages have been reported in phc 822 and psychiatry 822 there are possibilities that mps with a medical degree from outside eueea 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 eueaa choice of employment and medical specialty in sweden and 2 to explore and understand a potential overrepresentation 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 overrepresented 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 wellbeing should be developed methods the study employed a mixedmethod 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 context recertification of mps and specialist training in sweden in sweden mps with a medical degree from outside the eueea who wants to continue to practice need to 26 which is 10 of the 11570 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 41000 physicians practised their profession 27 data collection data were gathered through an electronically disseminated questionnaire the swedish board for health and welfares categorization of medical specialties was used to cluster medical specialties in the questionnaire specialities identified in the literature as low prestige were extracted and separated from their overarching categories the following questionnaire items were used for the current study whether respondents had begun or completed specialist studies before migrating to sweden and if so in which specialty whether general practice was considered a specialty in their education countries whether they were undergoing or had completed medical specialty training in sweden and whether their specialty was their first choice how they perceived the status of different medical specialties in sweden and what aspects influenced their choice of employment the questionnaire included closedended questions employing 3point and 5point likert response and openended 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 semistructured 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 seven mps in specialty training responded four of whom were pursuing general practice and were included in the study 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 audiorecorded and transcribed verbatim data analysis the statistical package for the social sciences version 2500 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 shapirowilk tests parametric statistical tests were utilized an independent sample ttest for examining differences between groups and a oneway betweengroups anova for examine differences between three or more groups the chisquare test and cramers v 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 pvalues were adjusted for multiple comparisons via a bonferroni correction of primary endpoints pvalues less than 005 were considered statistically significant for all statistical tests the data from responses to openended questions and the interview transcripts were analysed using an inductive approach to thematic analysis 2829 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 researchers 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 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 onehalf 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 firstchoice 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 work private life and the surroundings and to 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 ones 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 when comparing mps in general practice with mps in other specialties a significant statistical difference was found in only one aspect ability to have the same patients for a long period this aspect influenced mps in general practice significantly compared to respondents in other specialties vs m 218 p 0000 a significant association was found between gender and medical specialty p 0017 phi coefficient 0238 where women were more likely to specialize in general practice than men female respondents regardless of specialty scored higher on some aspects related to private life 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 vs m 215 p 0028 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 2 509 p 0024 phi coefficient 0228 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 conditions at the medical labour market the respondents who were not working or had specialty training in their firstchoice specialty were asked to indicate their perceived reasons for why not the respondents had applied for but not received their firstchoice 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 postdoc and medical medical labour market conditions included intense market competition which prevented respondents from getting their firstchoice 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 firstchoice 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 firstchoice specialty were the length of time it would take to land a firstchoice position and a lack of contacts respectively for mps in other specialties the most common reasons for not working in a firstchoice 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 indepth 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 redletter 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 oncall 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 firstchoice 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 overrepresentation 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 overrepresentation 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 fortysix percent of the respondents were women and 54 were men this reflects the gender distribution patterns among specialists in sweden 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 womens 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 firstchoice 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 183233 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 18 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 this is reflected in our results as a lack of contacts was cited as a reason for not working in ones firstchoice specialty empirical studies have suggested that informal networks affect ones career advancement opportunities in sweden and that this is of disadvantage for migrants 183134 returning to bourdieu´s concept of symbolic capital 1617 our results indicate that social capital 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 overrepresentation in general practice in sweden physicians in general practice constitute about a quarter of all specialists in training or working more than half of the respondents with a medical degree from outside eueea 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 lowprestige specialty which mps usually also do in other countries 125192035 in our study respondents in general practice indicated that it would take too much time for them to obtain a position in their firstchoice specialty previous research has suggested that mps adjust their career plans to pursue general practice psychiatry and geriatrics for the sake of job availability 235 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 eueea in sweden must undergo a timeconsuming 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 142536 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 labour market conditions might limit freedom to choose and decrease motivation to pursue a certain specialty this can lead to stress dissatisfaction and decreased wellbeing 67 and if change of specialty a waste of competence the extent of free choice can be discussed by drawing parallels to motivation accordingly conditions on the labour market as well as circumstances in life that might limit an individuals freedom of action may be internalized and consequently accepted turned to intrinsic motivation culminating in the perception that ones choices are free 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 firstchoice 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 lifestylefriendly such as general practice other specialties that have been described as more lifestylefriendly 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 overrepresentation 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 specialtys low status but still are satisfied with their choice 8 not all physicians strive for highprestige 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 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 indepth the mixedmethods design of the study was however a strength as the interview data provide more indepth illustration of the questionnaire data in addition the breadth of the questionnaire data compensated for the small sample we also had a welldefined population for the questionnaire as all of the cpp participants in sweden between the admission years 20092017 were eligible the questionnaire respondents 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 and respondents in specialist training or being specialists 41 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 eutrained 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 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 timeconsuming 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 overrepresentation 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 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 biomedcentralcomsubmissions ready to submit 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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 overrepresentation in general practice family medicine a specialty suffering from staff shortages in sweden methods a mixedmethods approach was applied this included questionnaire data from 101 mps training and working as medical specialists in sweden and semistructured 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 choiceʼ 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 conditionslabour market conditions such as high competition and the timeconsuming 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 n ationally more than onehalf 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 among sexually active young women 2 promoting effective use of contraception is a highly economical approach to preventing ups for every 100 invested in preventing an up 568 in medicaid expenditures would be avoided 3 current initiatives to reduce up have focused on increasing access to and use of longacting reversible contraception such as intrauterine devices and implants 1 but the proportion of sexually active women reporting use of condoms birth control pills or nonuse of contraception 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 racialethnic 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 selfesteem have also been linked to use of contraception high levels of depressive symptoms have been related to inconsistent use of contraception in crosssectional and longitudinal cohorts 1819 hall et al found that the odds of weekly consistent contraceptive use were reduced by 47 among women reporting high depressive symptoms and longterm 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 selfesteem have been related to reports of more consistent use of contraception among collegeage 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 highrisk women in the current investigation we conducted a longitudinal study among young urban primarily minority women to test theorydriven models of the direct independent effects of both violence exposure and psychological factors on ineffective use of contraception based on vulnerabilitystress models 21 and resilience models 2223 we also predicted that psychological factors would moderate the positive relationship between violence exposure and ineffective contraceptive use specifically we hypothesized that depressive symptoms would be a vulnerability factor and increased the odds that women with high violence exposure report ineffective contraceptive use and selfesteem 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 selfesteem and decrease depressive symptoms to improve effective contraceptive use and reduce up in this highrisk population of young women materials and methods enrollment and study eligibility the young womens health study recruited 315 young urban women who sought care in a highvolume 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 1830 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 lowresource 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 computerassisted survey instrument was used to administer the baseline questionnaire followup casi telephone interviews were conducted 9 months after baseline to assess the contraception method and consistency of use women were compensated for their time participating in this study with 30 provided at baseline and 15 after completion of the followup 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 5item tweak scale 24 a total tweak score of 3 or more indicated problem drinking 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 or exposure to childhood sexual violence these questions have been used in previous research 1325 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 their experience with sexual violence since 16 years of age and their experience with physical violence by an intimate partner in the past year using standardized questions 13 community violence current communitylevel violence was measured at baseline using the city stress inventory a validated 18item scale to assess perceived neighborhood disorder and exposure to communitylevel 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 scale was used to measure depressive symptoms at baseline this scale has been shown to be reliable among urban populations 2829 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 29 the validated 10item rosenberg selfesteem scale was used at baseline to measure selfesteem and higher scores indicated higher levels of global selfworth 2330 scores ranged from 0 to 30 with scores below 15 indicating low selfesteem and scores over 25 indicating high selfesteem contraception at the 9month followup survey women reported all methods of birth control used during the followup 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 followup included the selfreported use of birth control pills the withdrawal method condoms depoprovera intrauterine device patch vaginal ring implanon morningafter 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 331 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 depoprovera to be classified as an effective contraception user at followup women had to report using larcs adherent use of depoprovera patch or vaginal ring during the followup period or consistent use of birth control pills or condoms for each sexual act during the followup period two women reported consistent and exclusive use of the morningafter pill and they were included in the effective user group women were classified as ineffective contraception users at followup if they reported using the withdrawal method not using any form of contraception in the followup period or reported using birth control pills or condoms but not consistently during followup 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 descriptive statistics were generated for the total sample and contraceptive user group analyses of variance or nonparametric kruskalwallis tests were used to compare the contraceptive user groups on continuous variables fishers exact tests or chisquare 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 selfesteem the outcome of interest was ineffective use of contraception over the 9month period compared with effective use of contraception over the 9month 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 a pvalue £02 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 selfesteem separate multivariate models were initially created for each moderator the first multivariate logistic regression model included childhood sexual violence level of selfesteem and an interaction term the second multivariate logistic regression model included childhood sexual violence depressive symptoms and an interaction term to examine the collective effect of depressive symptoms selfesteem and childhood sexual violence a final multivariate logistic model was developed twotailed pvalues of 005 were considered statistically significant in all models all analyses were performed using spss 22 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 with a 5 lost to followup and a 7 refusal rate at followup we found that 7 women reported trying to conceive and 11 women were not sexually active during the followup period these 18 women were excluded from the analyses thus the final analysis included 258 eligible women with complete baseline and followup data the majority of participants were young african american women with a mean age of 22 33 years sixteen percent of women were latina 22 of women did not finish high school and 21 of women reported ever being homeless over onehalf 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 3796 115 over 40 of women reported high depressive symptoms at baseline 59 reported low selfesteem at baseline and the mean level of selfesteem was 2334 56 sixtyfour percent of women reported effective use of contraception through the followup 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 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 in addition we found a higher mean number of pregnancies among women reporting ineffective contraceptive use the mean level of depressive symptoms was higher among young women reporting ineffective use of contraception compared with effective use of contraception the mean level of selfesteem was also significantly lower among women reporting ineffective use of contraception compared with women reporting effective use of contraception 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 selfesteem decreased the likelihood of ineffective use of contraception specifically women reporting childhood sexual violence at baseline and high depressive symptoms at baseline 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 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 selfesteem continued to be related to ineffective use of contraception the interaction term assessing the moderating effect of low selfesteem on the relationship between childhood sexual violence and ineffective contraception did not support moderation 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 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 a final multivariate logistic regression model including childhood sexual violence high depressive symptoms and low selfesteem found that the experience of childhood sexual violence and low selfesteem were significantly related to ineffective use of contraception but high depressive symptoms were not discussion this longitudinal assessment of young sexually active primarily african american women aimed to examine the direct effect of violence exposure depressive symptoms and selfesteem on ineffective use of contraception as well as evaluate the moderating influence of depressive symptoms and selfesteem on the relationship between violence and use of contraception the results from this study identified both modifiable and nonmodifiable factors related to ineffective use of contraception but did not find that depressive symptoms or selfesteem modified the relationship between childhood violence and use of contraception others have also examined the main and moderating effects of selfesteem 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 longterm individual and community effects by reducing 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 highrisk 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 4950 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 275152 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 longterm reproductive health behaviors and screening for a history of childhood sexual violence may be particularly important when discussing pregnancy prevention developing traumainformed 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 selfesteem had an independent and significant increased risk for ineffective use of contraception limited research has examined the role of selfesteem 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 1819 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 selfesteem may impact a young womens 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 selfesteem 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 womans 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 selfreported a common method used in other research with communitybased cohorts 18 fourth methodological issues in the wording of the followup questions concerning consistent use may have introduced misclassification in the assessment of consistent use of depoprovera given the limited information on the adherence of required visits for consistent depoprovera 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 depoprovera 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 596061 finally we did not collect information on household income or information on the experience of violence during the followup 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 followup period these findings suggest the importance of screening for childhood sexual violence when discussing pregnancy prevention and promoting interventions to increase selfesteem to improve consistent use of effective contraception methods to reduce ups among young sexually active women conclusion screening for childhood sexual violence developing traumainformed approaches and designing interventions to increase selfesteem could contribute to the improvement in contraceptive use among urban minority women author disclosure statement no competing financial interests exist

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 ie 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 tabletbased surveys measured childhood violence communitylevel violence intimate partner violence depressive symptoms and selfesteem 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 contraceptionthe multivariate logistic regression model showed that childhood sexual violence and low selfesteem were significantly related to ineffective use of contraception adjusted odds ratio aor 269 confidence interval 95 ci 118617 and aor 051 95 ci 028093 respectively although selfesteem did not moderate the relationship between childhood sexual violence and ineffective use of contraception aor 038 95 ci 008184 depressive symptoms were not related to ineffective use of contraception in the multivariate model conclusions interventions to reduce up should recognize the longterm effects of childhood sexual violence and address the role of low selfesteem on the ability of young sexually active women to effectively and consistently use contraception to prevent up

key results of 855 women in the roi 368 and 386 reported contraceptive use compared to 66 of rural women in the nsfg sample among the roi women 27 had received prior 30day sud treatment via outpatient counseling or inpatient program and these women had increased odds of contraceptive use there was a positive association between contraception use and recent medications for opioid use disorder and prior 6month primary care utilization 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 women are using drugs at increasing rates 1 with consequent rises in overdose deaths substanceexposed pregnancies and other related consequences over the past two decades 12 the national prevalence of maternal opioidrelated diagnoses at time of hospital delivery 34 and neonatal opioid withdrawal syndrome have increased considerably 4 with trends indicating higher rates of maternal opioidrelated diagnoses and nows in rural compared to urban us areas 5 reproductiveage women who use drugs 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 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 6090 of pregnancies being unintended among wwud 6 compared to 45 among the general us population 9 wwud less often use highly effective contraceptive methods and effective methods 71011 while relying heavily on condoms for contraception 712 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 1314 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 1617 delays to care contribute to maternal and neonatal complications including placental rupture premature delivery nows and intrauterine growth restriction 18 gender and sexrelated factors unique to women contribute to their initial substance use progression from initial use to sud and substance use disorder treatment engagement and retention 2 wwud tend to engage in higherrisk 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 2223 in rural communities wwud experience poorer health outcomes partially due to unique barriers to accessing healthcare and reproductive services 222425 and sud treatment largescale 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 us 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 hivhcv 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 hivhcv testing would be associated with increased contraceptive utilization methods rural opioids initiative study design participants and data collection this investigation is a subanalysis of the rural opioids initiative a multisite crosssectional survey of people who use drugs from ten us states with recruitment from january 2018 to march 2020 31 the roi collected data on demographics drug use consequences of use sud treatment hivhcv screening and treatment and healthcare utilization eligible participants reported use of any opioid via any administration route andor any other drug via injection in the prior 30 days to get high except for wisconsin which limited to injection use only inclusion criterion for all sites was age ≥18 years old except two states 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 3132 a strategy based on respondentdriven sampling methods to improve sampling of hidden populations 3334 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 3536 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 1544 to 1549 years old with the 20152017 cohort and purposefully oversamples nonhispanic blacks hispanics and teens 3536 the nsfg uses us census bureau office of management and budget for residence location we included nsfg respondents residing outside of us census metropolitan statistical areas to approximate roi regions measures we determined the roi population of reproductiveage women who were not currently pregnant but could become pregnant via survey responses the roi survey asked all participants their gender and was designed so only participants identifying as female were asked their pregnancy status participants who selected no or dont 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 those who answered yes or no were included in the analysis we use the term medicalprocedural contraceptive to encompass all medical forms of hormonal contraception and all proceduralsurgical contraceptive measures 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 medicalprocedural contraceptive use characteristics potentially associated with contraceptive use were examined on the basis of previous literature and a priori hypotheses 93738 we included categorical characteristics age education level raceethnicity relationship status we included yesno 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 medication for opioid use disorder use and sud treatment via outpatient counseling or inpatientresidential program survey participants could indicate use of more than one sud treatment another outcome was healthcare location in the prior 6 months with four categories ambulatory care acute care health department or mobile van no care received other outcomes included the following prior 30day substance use and prior year hivhcv testing analyses we used descriptive statistics to summarize participant characteristics prevalence estimates and sitespecific variation of medicalprocedural contraceptive use overall unweighted and rdsweighted estimates of medicalprocedural contraceptive use and 95 confidence intervals were calculated using mixedeffects models 34 study site was the random effect in these models and estimates were obtained by averaging over sitespecific effects we then stratified the data by site to compute sitespecific estimates of medicalprocedural 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 medicalprocedural 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 noncontraceptive surgery differences in age raceethnicity and education between the roi and nsfg samples were assessed using chisquared test with rao and scotts secondorder 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 medicalprocedural 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 pearsons chisquare 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 recent substance use and hivhcv testing potential confounders with pvalues ≤ 010 in bivariate analyses were included as covariates in each model in addition to the main independent variable of medicalprocedural contraceptive use analyses were conducted in r v405 using the lme4 package results the roi recruited 3048 participants from eight study sites sixteen who selfidentified as transgender or other gender and 30 women who were currently pregnant were excluded from the analytic sample our sample included 855 wwud with average age 33 years who were predominantly white and insured overall 50 had engaged in condomless sex in the prior 30 days and 53 had experienced homelessness in the prior 6 months the overall prevalence of medicalprocedural contraceptive use was 368 unweighted and 386 weighted overall and sitespecific prevalence estimates of medicalprocedural contraceptive use are listed in table 2 in the prior 30 days 85 of those in roi sample had used opioidsheroinfentanyl and 73 had used methamphetamine crystal women reporting not using a medical procedural contraceptive were more likely to have recently used methamphetamine than those who used contraception this difference was also seen in those who used both opioids and methamphetamine women who reported medicalprocedural contraceptive use were more likely to have received sud treatment using moud in the prior 30 days and sud treatment via outpatient counseling or inpatient program compared to those not using contraceptives in analyses adjusted for age raceethnicity 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 there was no evidence supporting an association between contraceptive use and recent opioidheroinfentanyl cocainecrack 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 medicalprocedural contraceptive than those without recent methamphetamine use there were 570 women included in the nsfg cohort 46 were excluded as they were currently pregnant this cohort sample is representative of 7035913 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 medicalprocedural contraceptive use after controlling for age raceethnicity 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 discussion medicalprocedural contraceptive use by reproductiveage wwud in rural us communities was substantially lower compared to women from rural communities surveyed in the nsfg of whom 66 reported medicalprocedural contraceptive use the nsfg likely includes some wwud however given the high prevalence of recent homelessness and incarceration among the roi wwud householdbased 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 the positive association with moud treatment and contraception use did not meet the threshold for statistical significance this discrepancy could perhaps be explained by the high prevalence of methamphetamine use in the roi population and current lack of fdaapproved 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 medicalprocedural contraceptive and prior 6month utilization of ambulatory services that did not meet the threshold for statistical significance 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 criminallegal concerns could hinder counseling on reproductive health some women are also equivocal about possibly getting pregnant and wwud more frequently report ambivalence around childbearing 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 womenspecific integrated programs offering sud treatment andor harm reduction services with reproductive health services 304546 in various service delivery models pregnant and parenting wwud may also benefit from these types of care models 4748 rural communities with less overall healthcare availability have further limitations in availability of sud treatment programs that include wraparound services and familyspecific 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 30day methamphetamine use alone or in combination with opioids had a lower likelihood of using medicalprocedural 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 higherrisk sexual behaviors and sti hiv and hcv transmission 50 of the 855 roi participants 50 had reported prior 30day condomless sex methamphetamine is also disproportionately used in many rural communities 5152 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 hivhcv 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 highrisk 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 preand postexposure prophylaxis to reduce hiv acquisition risk 53 testing and treating reproductiveage wwud for sexually transmitted and bloodborne 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 preppep 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 435556 our sample may underrepresent the number of reproductiveage women who could become pregnant the crosssectional 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 patientcentered 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 racialethnic diversity a major limitation given black latina and multiracial 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 femaleidentifying participants to answer questions about contraceptives and pregnancy we note that femaleidentified 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 racialethnic 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 311 to 619 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 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 open access this article is licensed under a creative commons attribution 40 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 and the source provide a link to the creative commons licence and indicate 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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 us 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 respondentdriven sampling rds involving eight rural us regions january 2018march 2020 national survey on family growth nsfg nationallyrepresentative us household reproductive health survey 20172019 participants women aged 1849 with prior 30day nonprescribed opioid andor nonopioid injection drug use fecundity determined by selfreported survey responses main measures unweighted and rdsweighted prevalence estimates of medicalprocedural contraceptive use chisquared tests and multilevel linear regressions to test associations

ess are different from mens experiences since many of them are subjected to genderbased violence and persecution women and girls who are normally protected because of their gender now lack that protection and are at risk for genderspecific human rights violations refugee women and girls are especially vulnerable to sexual genderbased 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 genderbased violence through migration routes in europe and even after resettlement the lifetime prevalence of sexual violence against girls and women over 15 in the general population was 11 while it reached 693 of migrants and refugees additionally genderbased and sexual violence has longterm impacts on refugee women and girls mental health and wellbeing including posttraumatic stress disorder depression anxiety and suicidality genderspecific human rights violations have harmful impacts on refugee womens physical and psychological states which are further exacerbated by the challenges of resettlement mental health challenges refugee women have been found to have especially high rates of psychiatric symptoms indeed the traumatic experi ences and postmigration 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 given the higher risk of experiencing mental health issues as a refugee during childbearing age refugee mothers are especially vulnerable to developing mental health issues due to their rapidly changing living situation and circumstances 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 furthermore schweitzer and colleagues 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 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 childrens needs to the detriment of their own wellbeing refugee mothers focus on supporting their children and coping with these barriers leave them at an elevated risk for mental health problems thus refugee mothers face a unique set of challenges that require specialized evidencebased interventions language barriers moreover the language barrier through the resettlement process is an impediment to refugee womens access to serv ices which in turn can negatively affect their psychological wellbeing this barrier is especially salient in the postresettlement context where refugee women seldom have enough time and resources to address their educational needs and learn the language of the host country furthermore the language barrier disproportionately affects women as immigrant men have been shown to achieve better proficiency of the host countrys language than women due to inequalities in social and educational opportunities a canadian study found that refugee womens english fluency was longitudinally associated with higher rates of employment and lower rates of depression 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 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 therefore it is critical that language education services consider the needs of refugee mothers to support their hostcountry language fluency the mental health difficulties of refugee mothers such as depression anxiety trauma suicidality 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 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 evidencebased interventions and research method search strategy an electronic search was performed on psycinfo medline and web of science core collection 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 interrater reliability studies were included based on the following inclusion and exclusion criteria presents an original intervention focuses on refugee populations includes or targets mothers differentiates between data gathered with mother and father refugees and is not solely medical in scope 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 indepth interviews research on refugee mothers reproductive health vaccine research and postpartum 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 motherchild intervention was mainly to improve child development and wellbeing through better mother and child interactions support and education the participants were 87 bosniandisplaced motherchild dyads they were divided into an intervention group and a nonintervention group 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 childrens 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 and the mothers interviews preintervention and postintervention 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 pretest and posttest in the intervention group while there was a slight decrease in the nonintervention group there was a nonsignificant increase in total social support scores pretest smaller than posttest p 05 there was a significant increase in social support for advice scores pretest smaller than posttest p 05 there was a nonsignificant increase in mothers wellbeing for today pretest smaller than posttest p 05 and there was a significant increase in mothers wellbeing for usually pretest smaller than posttest p 05 there was a nonsignificant decrease in mothers wellbeing for prefer pretest bigger than posttest p 05 there was a significant decrease pretest bigger than posttest p 05 in total ies scores and on the hyperarousal symptoms pretest bigger than posttest 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 nonintervention group on the avoidance and intrusion symptoms subscales dybdahl 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 wellbeing mothers wellbeing was only lightly discussed in relation to childrens wellbeing 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 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 90minutes each rooted in communitybased collaborative action research the smallgroup 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 coefficient analyses revealed a positive correlation between the number of times a topic was presented and the number of women who retained the topic 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 womens 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 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 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 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 homebased intervention for immigrant and refugee trauma survivors visiting moms is a program for highrisk refugee and immigrant mothers and their infants based at the massachusetts general hospital chelsea health care centre the intervention program focused on the needs of both mothers and infants and their functioning as a dyad and adopted a communitybased approach in which paraprofessionals provided athome 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 motherchild dyads and was rooted in evidencebased practice as well as local realities however no details were provided in the article to supplement those claims parentchild interactions and additional stressors such as poverty and language barriers were assessed and taken into consideration the home visitors intervened by using relationshipbased model 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 selfdisclosure 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 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 childrearing 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 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 intake session included eighteen families from colombia afghanistan sudan burma rwanda congo egypt mongolia bosnia and burundi there were sixweek sessions held with the participants the interventions group sessions focused on topics such as the impact of trauma on the family positive coping skills and problemsolving skills it should be noted that the authors did not disclose their data collection process or method nevertheless the study highlighted the importance of relationshipbuilding 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 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 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 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 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 asylumseeking mothers and babies oshaughnessy and colleagues 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 motherchild 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 motherchild relationship moreover it adopted a communitybuilding approach to mitigate the negative impact of being separated from their home communities and adopted a participatory approach where childrens needs helped shape the group sessions the intervention consisted of therapeutic infantmother 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 careindex an observation measure for adultchild dyads revealed that two participants improved the quality of their motherinfant interactions from seriously compromised to of concern while two mothers remained at the cusp of of concern and one mothers scores increased within the good enough range it is important to note that the results of the sweet mother intervention provided an encouraging insight into an intervention model for atrisk 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 careindex limiting our understanding of the impact of the intervention on motherchild 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 yet no screening for exposure to traumatic experiences or psychiatric symptoms was performed likewise no identified outcomes were examined visavis the mothers psychological wellbeing the methodology of the study lacked a direct measure of participating mothers mental health and general wellbeing 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 facetoface 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 oneyear period the phone number provided had many call categories such as translating and interpreting service participants from the same community and the training facilitator researchers because many refugees struggle with the host language groups were divided to share a samelanguage proficiency for oral communication and by culture of origin the first six weeks weekly training sessions were conducted and the consequent five weeks five bimonthly 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 intracommunity calls were calls made to people who belong to the same community extracommunity 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 intracommunity calls represented social capital bonding indeed in each community the category of the intracommunity 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 extracommunity 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 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 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 others 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 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 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 thus the current review sought to evaluate existing interventions aimed at supporting the specific needs and wellbeing 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 mothers psychological needs and wellbeing the present review suggests that across different populations and methodologies a pattern emerged whereby contact with others with similar experience and culture was essential 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 the moving forward project sessions provided the mothers with a safe space and what was described as a gathering 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 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 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 which in turn is known to be a protective factor when struggling with mental health issues 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 postresettlement 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 furthermore the refugee mothers benefited from having a safe space to discuss their shared experiences and challenges 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 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 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 similarly the united nations international organization for migration has organized safe spaces for women and girls to come together express themselves safely and openly and develop positive coping strategies the use of such womencentered safe spaces for refugee women and girls has been shown to have positive impacts on participants mental health and wellbeing thus creating safe spaces for refugee women and girls is an effective way of supporting their postresettlement needs and improving their mental health wellbeing and resilience through communitybuilding the review also suggests that having allies increased refugees willingness to connect more to the host country society 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 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 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 extracommunity or host country wider society indeed communitybuilding in the postresettlement context leads to better access to health services and increased access to adequate professional response in cases of genderbased violence 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 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 wellbeing 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 wellbeing 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 facetoface 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 communitybuilding 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 communitybuilding 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 frontline 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 countrys general community competing interests the author has declared that no competing interests exist

refugee mothers endure and are at risk for depression posttraumatic stress suicidality and anxiety there is a gap in the literature regarding interventions for refugee mothers mental health and wellbeing 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 genderbased 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 communitybuilding and advocating for refugee mothers needs are emergent protective factors for refugee mothers finally based on the review recommendations for future interventions followed

introduction one day i got a message via facebook suggesting i should sign an online petition against the plans to demolish the old communityrun 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 facebookgroup started to follow their twitter feeds and added many of the participants as facebookfriends 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 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 technooptimistdeterminist 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 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 activism could be defined as participation from outside representative democratic institutions but with an outspoken aim to influence them it is argued that activism is important for broadening political participation beyond established power elites 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 decisionmaking always favours one over another 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 laclaus 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 shorttime 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 longterm social movement or a singleissue campaign that disperses once the demand has been met 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 in this article the focus is on participation in activist demands in network societies but how are we to understand network societies in castells 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 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 according to van dijk 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 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 general definition of web 20 than ellison boyds popular but more specific delineation of social network sites in my research it has been important to include both interactive and networking functions of social media without for that sake downplay their broadcasting functions that continue to be central for social media practices in this way my approach resembles jenkins ford greens recent account of social media as spreadable spreading i believe is a more accurate description of what is happening on social media than the oftenused verb sharing but in contrast to jenkins and coauthors i am more critical towards supposed empowering potentials of such spreading to avoid a deterministic or an overtly uncritical understanding of social media platforms i lean towards kaplan and haenleins definition of social media as internetbased applications that build on the ideological and technological foundations of web 20 indeed media platforms have a dynamic relationship between the social and the technical in network societies our communities become increasingly technologically mediated in activist demands using internetbased social media platforms communication practices entangle with the demands organisational structure and identity to the point that they are hard to separate 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 2010chadwick 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 numerous studies have focused on how activists use the internet to mobilise support and organise themselves and their demands some argue that internetbased 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 while acknowledging that the landscape of power is changing in network societies there is no reason to believe that increasing organisation in 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 pp 5152 thus the interdependence of people in network societies corresponds with the increasing importance of managing behaviour power has to do with who can influence and who is allowed to influence the course of events 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 for the generation of reputation which in turn determines whos information will get noticed or not hence networking power intersects with status recognition legitimation and asymmetries between users in terms of visibility and attention 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 ethnographic study of a contemporary middleclass activist demand saving a local bathhouse from destruction this demand engaged 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 middleclass 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 middleaged 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 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 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 twitterfeed mostly to spread information on activities as well as a means to mobilise participation for quick mobilisation activist used a textmessaging list for more lengthy comments activists posted both on the blog as well as on a facebookgroup rädda aspuddsbadet söfö use both a facebookgroup and at ningcommunity 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 encourageddemanded a social negotiation of activists selves something that was done through practices of updating furthermore i concluded that these values largely connected to using online social media platforms seemed to pushdiscipline activists to participate 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 noncommercial 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 ie do something and engage others the individuals that were held in high regard were the engaged ones socalled 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 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 should be analysed in intersection with how activists position themselves and others in relation to these bourdieus 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 subfield in one instance he talks about the political field as consisting of subfields of parties and unions which could lead one to argue that activism is a subfield within a larger political field unfortunately bourdieu does not guide us how to delineate between fields and subfields here but his definition of a social field can be connected to laclaus understanding of demands bourdieu 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 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 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 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 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 refers to such coreactivists 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 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 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 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 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 bourdieus concept of habitus is helpful habitus refers to socially learned dispositions the sense of ones place the luggage an agent carries with himher which in turn positions the agent in relation to language culture class and the future andersson and jansson describe habitus eloquently as acquired knowledge that give the bearer a sense of an embodied navigation skill on the field in which heshe is acting an agents habitus both have a bearing on the field in terms of organising structuring and determining how field practices are conceived as well on the agent himherself by being connected to hishers position within the field providing meaning to practices and perceptions 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 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 middleclass upbringing similarly breindl and gustafsson 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 preexisting inequalities are both reflected and perhaps increased online a report from the oecd concluded that the digital divide in education is along lines of skills of use rather than access ie between those with the competencies and skills to benefit from computer use and those without such competencies such skills and competencies are influenced by socioeconomic factors also hargittai and hinnant found that among american young adults those with higher levels of education and wealthier parents used the web for more capital enhancing activities hence those coming from wealthier socioeconomic 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 ie 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 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 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 breindl and briatte 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 bourdieus concept of capital an agents habitus and composition of capital can not be understood as apart since the manner in which an agent uses capital reveals how the agent acquired it and therefore also how the agent is predisposed to use it pp 58 61 bourdieu 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 activist capitals in network societies profit here is to be understood as positions more to the core of a demand the notion of capital is related to practices of positioning because capital use cannot be understood without reference to the agents habitus position within the field and in turn the field position is dependent on the specific capital the agent can accumulate there have been many attempts to outline internet specific capitals also by references to putnams often cited elaborations of bourdieus social capital ellison et al for example discusses online social capital or sociotechnical capital as based on technological affordances one of the most detailed accounts is urrys 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 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 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 urrys reasoning according to him network capital is about being connected making yourself connectable for capital enhancing purposes 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 bourdieus 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 gustafssons study individuals holding power in activist networks were generally the more active ones the number of postingsactions of a user and their level of participation in a shared project has become a currency in many online environments 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 biggars study of crowdsourcing activities he claims that taking part in such activities is about building ones online portfolio and leveraging ones cultural and social capital within a community 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 in order to appeal a decision as well as knowing were and how to find information and a sense of knowing how to navigate the field 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 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 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 it is along lines of who has the ability to connect networks to each other that constitutes 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 the importance of bridges can be traced back to heidegger and simmel 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 weak ties are conceived of as resources since it is through such ties that new information opportunities reach ingroups of users and it is through weak ties a community group or demand can reach out to others 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 have discussed such easytopersonalize action themes 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 their networking power makes them into gatekeepers of what information goes viral or not barabási 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 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 and to act on calls for arms and for this intermediary ties 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 and thus functioning as important intermediaries between activists and the political system this reasoning further resonates in breindl and gustafssons 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 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 ie 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 in network societies but this also has to do with an activists skills and position in the network to begin with in other words an activists 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 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 corepositions or as bourdieu 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 in other words to discuss these capitals it is important to consider the ingroup versus the outgroup in the capital accumulation the negotiation for recognition it seems could only take place within the demand 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 himself mostly talk about economic capital cultural capital social capital and symbolic capital it is apparent by focusing on recognition that i am exploring the terrain of symbolic capital in bourdieus 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 talks here about a popularity principle important for users recognition but also underpinning a socalled attention economy of social media this attention economy online is indeed stratified as powerful media conglomerates are better in attracting attention than others 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 others this argument is perhaps better illustrated if related to the notion of fitness in network theory 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 activists 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 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 ongoing 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 facebookpostings 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 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 spatiotemporal presence bourdieu 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 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 todays network societies though is that such capital is mostly negotiated for recognition online on social media platforms it thus becomes increasingly difficult to separate the online from the offline here indeed as chadwick argues activist actions often combine online and realspace behaviours and impacts and activists often operate in hybrid media ecologies 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 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 corepositions activists in southern stockholm that had not participated for some time lost recognition and thus also their corepositions 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 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 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 countercapitalist 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 about the author p dimaggio and e hargittai and c celeste and s shafer 2004 digital inequality from unequal access to differentiated use in km neckerman social inequality pp 355400 new york russell sage foundation n elias 1998 the social constraint towards selfconstraint in s mennell and j goudsblom

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 technooptimisticdeterministic assumptions are questioned this typology is based on bourdieus 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 ie 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 middleclass activist setting in southern stockholm using online communication platforms in tandem with more traditional offline activist participation to organise and mobilise participation

background singlehanded vs group gp practices in primary care general practices may operate as single practices or as groups of selfemployed physicians group practices comprise the majority in some countries such as great britain where 855 of all practices were group practices in 2010 1 singlehanded practices remain dominant in other countries such as hungary where all public health insurancefunded 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 taxfunded 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 singlehanded gp practices aided by one or more practice nurses coverage is based on a mandatory health insurance scheme with no optingout 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 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 swisshungarian 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 swisshungarian 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 costeffective manner to all population groups particularly disadvantaged ones to reduce health inequalities in addition to acute and chronic care new services were offered 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 invitationbased health status assessment or general screening 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 nonmedical 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 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 with no professional qualification in primary health care has a long history around the world chinese peasants with a few months of training 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 andor utilizing various public services orand 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 parttime with no requirement for professional or vocational training 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 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 on parttime contracts equivalent to 20 work hours per week work allocation and supervision of health mediators was the responsibility of the supervisor of all nonmedical personnel of the gp cluster the socalled public health coordinator who reported to the head of the gp cluster 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 healthrelated vocational qualification 3day 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 who have been known to be reluctant to attend such services 515 they participated in the organization and operation of various preventive services as specified by the public health coordinator 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 nonattendees to participate they carried out the majority of fieldwork related to communitybased 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 selffilled questionnaire of the health status assessment 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 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 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 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 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 parttime positions for health mediators had been planned during the implementation phase however these entrylevel halftime positions provided quite low wages that led to many of the mediators leaving their jobs if they found fulltime employment elsewhere remaining mediators repeatedly requested their work hours to be increased to that of fulltime and some gp clusters did request changing the parttime contracts to that of full time 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 parttime 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 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 fulfillmentvacancy 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 nonmedical 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 patients request so attendance of this service could only be compared to participation at other invitationbased national screening programmes of the country attendance of the health status assessment in the model programme was 1317 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 that was not significant due to the low number of datapoints part of the mediators work hours was dedicated to organizing community health promoting events 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 pearsons correlation coefficient was high 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 are insufficient to support significance the relationship of work performance of health mediators to the number of participants can be seen both in terms of the health status assessment and health promoting events as part of the programme evaluation a patient attitude survey in a representative sample of 1022 persons was conducted in 2016 of whom 836 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 however the proportion of job leavers was down to 20 between january 2016 and january 2017 reflecting increased integration fortyeight health mediators in halftime 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 fulltime position if requested by the head gps of the clusters from the management by january 2017 only 66 of the mediator positions were filled but 38 of the mediators had worked fulltime 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 socalled 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 singlehanded 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 singlehanded 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 invitationbased national screening programmes in the country breast cancer screening has been carried out by invitation among 4565 yearold women every 2 years its national rate of attendance ranged from 45 in 2015 24 to 61 in 20022003 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 1317 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 timeperiod 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 selfidentification 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 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 131428 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 halftime 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 based on experiences of this programme fulltime 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 singlehanded practices can remain longterm 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 singlehanded practices provide lower quality of care compared to group practices 3031 but relevant reports agree that singlehanded 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 nonperformed 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 costeffective and patientcentered 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 in hungary in 2013 the contribution of health mediators during 43 months of the programme was reflected by the high participation rate 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 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 sh81 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 ginop23215201600005 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 competing interests the authors declare that they have no competing interests

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 1317 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 generalthe 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

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 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 internalisation of negative attitudes and assumptions about homosexual people by homosexuals themselves lead to feelings of guilt inferiority and lack of selfworth 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 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 84 times higher likelihood of attempting suicide 59 times higher likelihood of depression 34 times higher levels of using illegal drugs and a 34 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 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 paneuropean 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 as well as locallevel and individuallevel variables a short form of ross and rossers 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 variables and possibly other structural issues and that ih will itself be associated with msms visibility and social context and hivrelated 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 nongovernmental partners from 38 countries in europe 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 as well as subgroups of msm who have many prevention needs poorly met promotion and recruitment the internetbased selfcompletion 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 lesbiangaybisexual transgender websites undertook online recruitment and many of these organisations also promoted the survey offline via posters recruitment cards and facetoface 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 andor 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 demographixcom whose staff was responsible for testing it across different computer platformsoperating systems and with different web browsers and managing the technical aspects including backups and data delivery to the researchers the data were protected with a 128bit 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 data preparation and analysis at the close of fieldwork there were 184 469 cases in the consolidated file partially completed surveys 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 lowthreshold 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 education was measured using the six levels of the international standardised classification of educational degrees corresponding to the educational system of each country outnessdefined as the proportion of people one is out to as gay or bisexual was measured on a 5point likert scale from all or almost all to none the proportion of male friends who are also attracted to men was measured on a 6point likert scale from almost all of them to almost none of them and i dont have any male friends having ever had an hiv test was a binary we compared this binary variable with the extended variable of how long the respondent had had an hiv test and found that the two measures correlated 088 we thus decided to use the binary measure in analyses particularly given the nonlinear nature of the time measure perceived control over sexual risktaking was measured on a 5point 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 nonsteady partners was measured as in the last 12 months how often were condoms used when you had anal intercourse with nonsteady male partners the number of nonsteady anal intercourse partners was asked as how many nonsteady partners did you have anal intercourse with in the last 12 months sexual diversity of practice emis asked for the recency of a range of sexual practices with nonsteady 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 nonsteady partners reported in the past 6 months size of settlement was measured on a 5point scale from a a very big city or town to a villagethe countryside legal climate was measured by scoring the presence of the six legislative measures of lgb status listed by wikipedia 20 with a high score of six for the presence of all legislative protections the gini coefficient of income inequality in a country was extracted from the un human development report coefficient for all countries with the exceptions of cyprus malta luxembourg and serbia which were derived from an identical calculation method using the cia gini score the gini coefficient ranges from 0 to 10 it serves as a general economic measure of distribution of wealth analyses analyses unless otherwise indicated were carried out using spss v 19 and v20 on the 38country dataset cluster analysis of the 38 countries was carried out using spss v19 a twostep 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 bivariate analyses were carried out using χ 2 with cramers φ as a measure of effect size for ordinal data and t test effect size statistic for univariable analysis of variance for interval or ratio level data was η 2 because of the large size of the subsample with valid ih scores 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 discriminationbased 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 gini coefficient and the size of place of residence all predicted ih ih in turn was associated with outness and age the hivassociated behaviour most closely associated with ih were ever being tested for hiv and a perception of having no control over sexual risktaking 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 risktaking onto ih indicated that those most closely associated with ih were lack of control over sexual risktaking and not being tested for hiv bivariate relationships between ih and country cluster gini coefficient septiles and lgb legal climate show a relationship between these variables and ih sexual diversity illustrates 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 nonsteady partners with covariates the number of nonsteady partners that they had unprotected anal intercourse within the past year and perceived control over sexual risktaking demonstrated a smalltomoderate effect size an accelerating relationship between ih and the relative frequency of condom use with nonsteady male partners was apparent the strong relationship of perceived control over sexual risktaking with condom use led to an additional analysis of the predictors of this perceived control the highest stepwise predictors were the number of nonsteady 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 nonrandom 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 questionnairebased 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 internetliterate 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 01 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 testtaking at any time as mediated by outness and denying that their sexual conduct is always as safe as the respondents want it to be thus higher ih appears to both discourage hiv testing and also to reduce the ability to have safe sex despite the intention to do so diversity of sexual behaviour 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 revealed a relationship of lower ih with increasing condom use 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 risktaking 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 hivrisk behaviours associated with high ih include lower levels of hiv testing 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 and is consistent with the association found between sexualityrelated 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 with regard to msm second such climate changes need to be communicated to professionals who are at the government or professional interface with msm clients possibly with appropriate inservice training third structural interventions should translate into the provision of specific services or outreach to msm fourth antiih measures for msm might include individuallevel opportunities on the internet anonymously targeting stigmatised sexual minorities these could be based on short easily read informational modules reduction of pathological stereotypes through prideenhancing modules rolemodel 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 europewide in 38 countries and 25 languages in this study indicates the potential of this medium and for regionwide 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 1565 are msm the potential public impact on 535 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 retraining costs however may be necessary as far as we are aware no study in europe has previously looked at hivpreventive behaviour and homonegativity from these paneuropean 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

et al internalised homonegativity predicts hivassociated risk behavior in european men who have sex with men in a 38country crosssectional study some public health implications of homophobia

overview early life is a critical period in the programming of the hypothalamicpituitaryadrenal axis which is essential for maintaining homeostatic balance in the face of stressors the social environment plays a crucial role in hpa axis development during this period of heightened plasticity 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 to regulate or buffer the physiological response to a stressor when a caregivers ability to serve as a social buffer is compromised child hpa axis development is affected 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 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 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 the goals of this review are to review the literature about diurnal cortisol patterning in foster children with an emphasis on the common experience of neglect review evidence that caregiverbased interventions that target responsive parenting strategies affect hpa axis functioning in foster children and 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 childrens hpa axis development although foster children experience a range of chronic stress neglect is the hallmark experience leading to outofhome placement in a 2013 report neglect was the most commonly reported type of maltreatment neglect refers to a caregivers failure to provide in terms of a childs physical medical emotional andor supervisory needs within the socialbuffering 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 earlylife 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 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 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 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 research by our group and others has demonstrated a relationship between neglect and hypocortisolism in young foster children in a sample of preschoolage foster children our group found the severity of experienced physical neglect to be associated with lower morning cortisol levels in addition when compared with a lowincome community control sample these foster children were significantly more likely to show low morning cortisol levels dozier and colleagues 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 neglecthypocortisolism relationship much of the initial research on cortisol in foster children has been crosssectional 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 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 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 at regular intervals during the preschool years predicted cortisol response to a laboratory stressor during middle childhood 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 corticotropinreleasing hormone is released from the hypothalamus stimulating the pituitary to release adrenocorticotropin hormone 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 dense brain structures strüber et al 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 can result in chronic elevated glucocorticoid concentrations which in turn leads to a downregulation of gr expression 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 caregiverbased interventions on hpa axis patterning caregiverbased interventions to improve outcomes for young foster children may function by affecting the quality of the social buffer in the childs 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 is a multicomponent intervention aimed at improving outcomes for preschoolage foster children by increasing caregivers positive reinforcement and consistent nonharsh limit setting from a social buffering perspective a mechanism of mtfcps 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 lowincome community control of nonmaltreated children these findings suggest that mtfcp protected against this flattening of diurnal cortisol associated with neglect and chronic stress exposure 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 mtfcp condition experienced a sustained decrease in stress associated with child behavior while the foster parents receiving services as usual experienced an increase during the yearlong study period 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 mtfcp group from a social buffering perspective these findings suggest that supportive interventions such as mtfcp may affect hpa axis functioning by bolstering the resources available for foster parents to help them deal with challenging behavior mtfcp 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 others have focused on foster care interventions in infancy and as such have taken an attachmentbased approach a focus on attachment is particularly logical early in life given the critical role of the childcaregiver relationship during this time the attachment and biobehavioral catchup intervention aims to increase sensitive and responsive parenting following child distress an aim in line with improving the caregivers 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 and that these effects are maintained even 3 years following the intervention summary and future directions overall these studies provide evidence that experiences of chronic adversity across childhood and diurnal cortisol patterning can be integrated into the current social buffering framework these studies are a critical starting point for the fields exploration of how interventions designed to influence the quality of caregiving can alter hpa axis functioning the interventions took a largescale multifaceted approach to provide initial evidence for which systems are malleable and which correlates of social support can in fact disrupt future cortisol trajectories these data suggest that although the specific mechanisms of interaction between daily parentchild 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 supports 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 largescale 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 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 in the context of strengthbased 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 finds 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 the hpa axis serves a critical regulatory role in the function and activation of several systems including brain regions sensitive to levels of glucocorticoids immune health oxidative stress and the gutbrain axis 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 this cortisol reactivity however the effectiveness of the social buffer during an acute stressor is dependent on the quality of the parentchild 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 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 likely interacts with the quality of the social buffer and social buffering capacity disclosure statement dr fisher is the developer of the mtfcp intervention described herein and a coowner of treatment foster care consultants inc which provides consultation on the implementation of mtfcp

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 hypothalamicpituitaryadrenal 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

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 lowincome 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 and other causes 34 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 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 39 through ascos health equity committee the society has advanced several initiatives to eliminate cancer health disparities including the establishment in 2019 of the supporting providers serving the underserved 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 lowincome 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 which defines this group as a population of individuals specifically lowincome 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 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 lowincome and racial and ethnic minority populations with cancer in their daily clinical practice the list included clinicians who applied to ascos grant programs that focused on serving underserved patients a total of 1215 participants were anticipated to reach thematic saturation however as this study was conducted during the height of the covid19 pandemic and given the time limitations of clinicians targeted for study participation the task force sent email invitations inviting 24 clinicians to participate in 3060 min virtual semistructured 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 webbased platform between 1 march 2021 and 30 april 2021 by investigators using a semistructured interview guide developed by members of the task force and created in discussion with members of the hec the interview questions were developed using the socioecological framework 11 interview questions explored clinician experiences delivering cancer care for lowincome and racial and ethnic minority populations and approaches that could support their care delivery two nonclinical members of the team experienced in qualitative methodology interviewing techniques and public health conducted all interviews to limit the impact of clinicianresearcher 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 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 and methodology three investigators with experience in qualitative methodology and backgrounds in public health anthropology oncology psychology ethics social work and health services research read samples of the transcribed text to get a broad understanding of the data content the investigators used a mixed inductivedeductive 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 who consecutively coded full transcripts discussed discrepancies and modified the codebook with the lead investigator a cohens 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 finetuned 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 studys start with those gathered from the semistructured 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 did not respond to the initial invitation and 2 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 and female respondents participants selfidentified as african american or black asian american native hawaiian and other pacific islanders or white 1 participant preferred to not answer most participants had completed their terminal degree more than 20 years ago and spent 25 of their clinical effort delivering care for lowincome and racial and ethnic minority populations most lived in the community where they delivered care and were employed by a hospital or healthsystemowned practice group or department with 10 or less fulltimeequivalent oncology clinicians and subspecialists most 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 or medicaid with no insurance or other forms of payment representing 18 of their patient population most participants reported that nonhispanic white patients represented 32 of their population followed by black or african american hispanic or latino and asian american native hawaiian and other pacific islanders thematic analysis revealed three major themes regarding barriers and two major themes regarding facilitators as it pertains to cancer care delivery for lowincome and racial and ethnic minority populations with cancer at least we are aware of the fact that we are shortstaffed 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 wellversed in these areas i depend or rely on them to assist with what resources within the community are available i have to say that its still hard you need administrative buyin 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 wouldnt 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 cancerrelated care and decisionmaking 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 doesnt understand we dont 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 dont 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 im going to get it because oh i am welcome and the services are there and yes the goods are highquality 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 thats 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 doesnt have insurance so cant 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 upfront 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 theres no resources to support providing navigation services and they dont have the nonprofit organization to provide those services the quality is going to suffer tremendously in this patient population when they dont have access to the navigation services the main carrot that youd 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 were building them because of course you dont want to get administrators in the business of driving their healthcare systems bankrupt but you also dont 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 its dependent on us though to have to make that argument the inadequacy of things we have around here i dont 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 dont have enough navigators to help them we dont have enough social workers to be assigned to the patient this is tough for me personally theme 2 evidencebased care delivery is challenging due to patients unmet complicated social and economic needs ive learned that in my time here that its meeting the needs of a patient more so than their cancer people who dont have access to resources will avoid medical care just because they know its going to entail something you know if theyre going to have to pay money or get people to help them get somewhere so its almost as if so i know that people may delay medical here until they just cant 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 its a mixed bag one of the barriers i think with the health literacy is a lot of our uninsured patients their first language they dont speak much english at all so thats been a complicating factor there is significant issues with health literacy there are many services patients actually dont have access to many primary needs like transportation patients dont have appropriate phones they didnt have appropriate wifi 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 dont 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 couldnt have transportation so there is a pullandpush 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 well arrange ubers for any patient that needs transportation issues so thats been really helpful at this hospital that i didnt have at other hospitals so ive even been able to get them in a lot easier that way but yeah job issues ive 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 thats 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 dont want to see the doctor and so i see patients when they tend to be very far advanced at the time of diagnosis they dont come in for screening and when they have a cancer they dont come in until they absolutely have to so when i was starting as the only fulltime 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 its frustrating when the administration wont listen to me but theyll 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 im very passionate and i dont give up which means i will push and push until i cant admittedly it breaks my heart but we end up turning away patients that dont have insurance we just cant financially treat them the margins are too small to have uninsured patients and write off we just cant do it a small center cant do it theres 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 didnt have running water didnt have heat didnt have any family support we dont have good options in the community to treat patients like thatliving in a situation where we couldnt safely treat himand so we transitioned to more of a palliative plan of care and thats just the reality its 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 theres 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 cant 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 endstage patients that with different spectrums and its discouraging the professional aspects related to taking care of this population have been quite a challenge its 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 thats 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 its not always possible you run into danger when you have just one oncologist or one advanced practice provider in the last two weeks ive 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 schedules full and its shocking it feels like it doesnt end we struggled through covid and yeah the pandemics getting better and now were getting slammed when were exhausted so yeah it just doesnt 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 dont 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 theres definitely frustration when you want to see a patient especially in the hospital and youd want to start treatment but you just cant and you know thats 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 childrens childhood entirely so that can make for burnout i struggled for a few years here yeah professionally very rewarding weve been able to do this and that but it was tough the work is timeconsuming 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 theres 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 its not the predominant part so you know burnout affects the whole hospital right it just doesnt affect the cancer physicians certainly there are situations where i feel frustrated by maybe whats 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 dont know whether its going to be donenot done are you going to struggle getting that patient a referral for a gastroenterologist because no one takes that uninsured charity patient now its unfortunately a lot at the forefront because you know you will not be able to take care of the patient the same way youre 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 ive 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 communitybased 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 cant meet the other so we have gotten creative about how we can help pay for a utility bill or a persons 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 dont 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 cant 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 twoday period so somebody can drive and bring this patient in for treatment its 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 dont 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 weve been getting a few physicians whove 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 its a calling not a job this for me is not just a choice its a duty i have to do it the work i do is definitely more selfmotivation i have always been interested in health disparities and so i knew early on this is what i was going to do the selfinterest 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 thats 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 were grappling with i left another organization for the opportunity to care for a more diverse patient population im the best chance the patients who are undeserved got and i could try to pass this off to someone else but who i cant necessarily get them into a primary care provider or i could get them to a primary care provider but someone whos not able to manage a super complicated situation like this its on me my goal was that patients wouldnt 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 thats 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 its 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 didnt really get any instruction on how to deliver this care then certainly in practice out at meetings and stuff its nothing that i focused on i imagine there probably are some lectures and access to formal lectures but its 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 wasnt until i started practicing that i learned how to do this when you complete your fellowship and then you transition to a communitybased 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 dont 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 theres 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 41 theme 1 lack of executive leadership recognition of resources required participants noted the significant amount of time and resources needed to deliver evidencebased 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 doesnt make sense to them because theyre 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 dont 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 shortstaffed team members all participants described dependence on underresourced and understaffed teams to address healthrelated social needs and noted the significant need for dedicated staff to ensure evidencebased care delivery one stated we have quite a busy practice we are only two oncologists here we dont have enough navigators to help patients we dont have enough social workers to be assigned to patients another noted we dont 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 havent been able to weve had an opening for over a year and havent been able to fill it one stated interestingly lessresourced 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 dont have resources theyre not turned away they can be turned away at a private moreresourced hospital but it doesnt 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 evidencebased cancer care delivery one stated so me talking to the administration they dont get it they dont understand what it takes what i constantly get told is we dont 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 didnt come into your center of excellence doesnt mean that their life is not valuable to someone doesnt mean that you shouldnt be counting them when youre 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 were most proud of another stated we need additional navigators and social workers but we dont 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 its 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 its exhausting theme 2 care delivery inhibited by unmet complicated social and economic needs participants noted that the delivery of evidencebased 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 cant 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 healthrelated social needs impacted patient wellbeing and frequently inhibited evidencebased care delivery many noted that patients lacked transportation to the clinic or had extensive commutes almost all participants however had identified solutions to overcome transportationrelated 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 healthrelated 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 dont 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 theres nobody at the other end to take care of the poor in a safe manner these are some of the things that are beyond individuals control and definitely beyond the control of the hospital issues involving health literacy were frequently mentioned as barriers to care im using words like doodoo hole to explain anal canal to a patient because thats 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 nonenglishspeaking population but throughout our population in response to challenges regarding healthrelated 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 dont have personal transportation means they have to depend on a medicaremedicaid 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 weve done at least in my practice is that we dont 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 its resource intensive for my medical assistants and the navigators but thats 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 evidencebased 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 im sure a lot of this was meant to help i dont 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 im 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 46 subtheme 1 wellbeing of clinicians associated with delivery of evidencebased care many participants noted that burnout was associated with their inability as professionals to overcome their patients social and economic needsneeds that directly inhibited the delivery of evidencebased care one stated so the disparity frustration ive 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 cant 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 dont have social workers navigators good systems in place then its very easy to work your clinic load then round at a hospital and not finish your day until 1000 or 1100 at night another stated there are only a few of us so we would work through lunch and its 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 dont have anything left you dont 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 ive remained cognizant of that but it affects everyone in the care team so its not just the oncologist its everyone in the care team so i think i recognize it in nurses i think i recognize it in clinical staff support staff when youre dealing with very sick highacuity patients with a lot of needs burnout problem is real one stated we dont 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 wouldnt 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 koreanspeaking people who go out in the community and they help translate theyre sort of our translators participants discussed how their interpersonal relationships in the community positively impacted their approach to cancer care delivery for lowincome 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 weve 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 theyre not in the network with the closest location but they need to get to another part of town and they cant 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 its 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 heres 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 theyre operating on them all participants noted that their passion and ties to the community facilitated the delivery of evidencebased care for populations most at risk for cancer disparities one stated if you dont 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 dont know its 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 its 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 doesnt 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 youve spent time in an academic center and you then transition to a communitybased program there is an idealistic approach but if you read through the published information it doesnt help you another participant reflected on how their firsthand experiences such as witnessing racism influenced how they approach their clinical practice i did not have any formal training about that honestly i wasnt 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 dont think that is absolutely clear when you move to an underresourced 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 lowincome 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 evidencebased 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 evidencebased 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 underresourced 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 highquality 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 longterm 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 evidencebased cancer care for lowincome 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 2324 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 232526 clinicians in our study reported that their underresourced 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 communitybased organizations were consistently identified as a major facilitator for evidencebased cancer care delivery among lowincome and racial and ethnic minority populations this organic network of clinicians and communitybased organizations served as an underground railroad network with a shared vision that collectively mobilized resources and directed them to ensure the delivery of evidencebased 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 resourcelimited settings and were skills attained only through experiential learning as participants highlighted a more formalized process to collectively solve problems 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 evidencebased 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 underresourced 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 evidencebased 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 lowincome and racial and ethnic minority populations the current study utilized nonrandom purposive sampling 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 covid19 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 nonparticipation 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 covid19 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 selfidentified their ethnicity as hispanic or latinoax or a race other than the ones we listed due to the small proportion of oncology clinicians nationally with these selfidentified characteristics it is unknown whether experiences may differ finally our study was conducted only among usbased 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 lowincome 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 daytoday challenges contribute to moral distress and burnout collective efficacy and community capacity across multiple levels are important and necessary facilitators for care delivery in underresourced 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

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 lowincome 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 evidencebased 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 evidencebased 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

september 11 and the war in iraq interest in cosmopolitanism as a transformative perspective has not declined in fact cosmopolitanism is increasingly regarded as a key analytical tool for studying a variety of outlooks and ethicopolitical practices especially since beck and sznaider proposed going beyond the limitations of methodological nationalism by adopting more complex and global perspectives alejandro gonzález iñárritus third feature film babel is global in terms of production and release an international coproduction 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 languageand four settings the us mexico japan and moroccoin which as in other multiprotagonist films a number of characters are connected by a global thread babel may be seen as both a post911 movie and as a filmic counterpart to calhouns 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 nationstate affects remote places where innocent people are criminalized as scapegoats for the sake of the protection of more privileged citizens hence it problematizes noncosmopolitan forms of domination and subordination in the current network society some critics have analyzed babel in relation to manuel castellss concept of the network society that is one whose social structure is made of networks powered by microelectronicsbased 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 for example paul kerr explores the films social relations of production drawing on castellss 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 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 films 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 technologyacross continents in this article i propose an analysis of babels critique of unequal power relations in the global network society in particular after the 911 attacks the film makes extensive use of formal strategies that encourage the viewer to reflect about noncosmopolitan positions of domination and subordination in the networksociety of the information era i will draw on castellss belief that although a networkbased society is ideally a noncentered 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 twentyfour sections the opening section set in the moroccan atlas introduces a goatherd abdullah and his two teenage sons ahmed and yussef we witness the transaction of a rifle between abdullah and his neighbor hassan 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 is in charge of two siblings mike and debbie the events of this storyline shuttle from san diego to a mexican village close to tijuana on the other side of the usmexico border the third fragment also set in morocco revolves around a married couple from the united states richard and susan who happen to be mike and debbies 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 a deafmute teenage girl apparently unrelated to the other stories we later find out that chiekos father yasujiro 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 is almost strictly followed until the end of the film resulting in a complex fragmented and multifocal film by means of its multiprotagonist 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 911 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 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 nationstates 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 nationstate societies the unbalanced logic of power governing presentday network society is a key theme in babel and it runs parallel to the films uneven network structure in her analysis of multiprotagonist films azcona draws on deleuze and guattaris 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 in the past decade a number of multiprotagonist films such as traffic crash and syriana speculated about the emergent network society which was being theorized in the social sciences 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 storyline takes shape as the central and dominant one mirroring the films 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 fourpart 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 at a structural level one key feature that makes the tourists storyline superior is its high interconnectedness with the others richard and susans 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 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 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 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 in babel as in the networkbased society it represents switches are relevant sources of power and richard and susans storyline proves more powerful because it is the only one related to all the other stories susans shooting is causally connected with the events of the moroccan narrative strand it triggers the action of amelias narrative and also infiltrates the moroccan and japanese media none of the other narrative strands is bound to all the rest for example chiekos plotline is faintly linked to the moroccan story through the transaction of the rifle and infiltrated by richard and susans strand through the media but it does not interact with amelias in turn the moroccan line of action is tied only by coincidence to richard and susans and to chiekos 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 susans 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 multiprotagonist 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 the rifle that is given as a sign of gratitude is sold to abdullah and later accidentally wounds susan it is an attenuated link to use bordwells terminology since the interconnectedness is governed by chaos theory in the shape of the socalled 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 amelias 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 debbies 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 multiprotagonist films usually depend on chance and not on traditional causality to interconnect their narrativestrands i will try to show here that babel deviates slightly from this logic the rifle may get the ball rolling but amelias 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 richards 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 richards request that amelia stay at home with mike and debbie on her sons 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 richards request is her decision to go on a oneday 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 this is also the case in babel susans 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 amelias decision to take mike and debbie to her sons wedding in mexico may be motivated by random events but is a conscious decision on her part 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 amelias plotline and closes richard and susans 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 causeeffect nexus between the two narratives suggests structural subordination of the mexican storyline to richard and susans since the events of this plotline influence to a great extent what happens in amelias 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 noncosmopolitan 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 amelias plotline point to her subordinate status and degree of vulnerability our first impression is grounded on richards authoritative tone in contrast with the nannys 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 amelias red tshirt 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 richards 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 susans storywhen 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 susans life and that he has been pushed to his limits in this case we get a closeup 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 richards domination over his employee not only parallels the superiority of his storyline over amelias 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 lawenforcing agents towards a number of distant people namely amelia santiago and the moroccan protagonistshints that there are global grounds for the unfortunate experiences of some characters for example the viewer is invited to suture together amelias unidirectional conversations and the us state departments 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 911 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 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 nationcentered response to the 911 attacks instead of promoting transnational politics based on a more cosmopolitan understanding of the other in babel onesided preoccupation with security causes unfounded fears of terrorism and brings chaos to the networked interdependent nationstates all over for example amelias 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 onesided 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 multiprotagonist films the structure of babel places richard and susans 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 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 multiprotagonist structure it makes us experience the rewarding omniscience that bordwell describes this reward validates richard and susans plotline as central for its ability to provide the evidence that helps us make sense of the films structure and plot a similar intrusion is repeated later in the tokyo plotline further reinforcing the role of richard and susans narrative as pervasive and a determining factor in the film while the japanese police officer is reading the handwritten note that chieko has given him in the previous fragment of the tokyo storyline we see susans face on the japanese international news and we learn about the outcome of richard and susans story the contrast between the secrecy of chiekos note which to our frustration we are never able to read and richard and susans conspicuously happy ending reinforces the hypothesis that in babels unbalanced structure the us protagonists are more worthy of attention than any other characters in the movie yet the officers uninterested look at the television set together with chiekos 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 in babel the pervasiveness of the shooting which points to post911 paranoia about security and the subsequent military operationsand 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 chiekos channel surfing sceneand 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 chiekos bedroom replete as it is with her personal belongings and pictures the news beams yussef and abdullahs closeups 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 notably yussef and abdullahs local selves are only global when they become secondary actors in the news of susans 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 citizens 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 richards prominence as has already been mentioned deleyto and azcona see the films narration as simultaneously governed by two types of temporality traditional time and timeless time they argue that the films 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 i want to show that timeless time is also marked by the recurrent events connecting narrative strands richards telephone calls to amelia and the double intrusion of their narrative into the tokyo plotlineand that this also contributes to making richard and susans 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 yussefs faces on chiekos television the moroccan segment that follows shows the kids hiding the rifle under a rock in the atlas mountains in babels 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 films 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 susans storyline therefore richard and susans 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 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 closeup of richard and susan as they come to terms with their past in the intimate space of anwars humble home this shot is followed by a series of quick shots frantically portraying susans 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 susans pulse and imposes a temporal limit on her life in another sequence in tazarine the chronological sequence is suppressed when richards authoritative voice demanding from a moroccan police officer an ambulance now is previous to the mens actual meeting while the officer is still seen approaching anwars house by stressing richard and susans 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 brothers body while it is being removed a long shot zoomingin to a closeup 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 susans evacuation from tazarine the wind now produced by a red cross helicopter hence the sad meanings associated with the natural wind of ahmed and yussefs game contrast with the meanings of hope but also inequality associated with the powerful artificial wind produced by a helicopter which will save susans 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 susans 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 amelias 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 noncosmopolitan 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 nationstate and the security of its citizens take precedence over the suffering of strangers babel denounces that in the wake of 911 attacks the nationstate 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 nationstate 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 susans shooting and its pervasiveness throughout the other storylines for example amelias tragic bordercrossing story is presented as a consequence of the shooting together with richards onesided and inflexible behavior echoing the us authorities management of susans wrongly labeled terrorist attack and the way they actually handled the 911 events this logic is reminiscent of the practices of control and exclusion set up on the usmexico border after the 911 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 elses territory in babel the viewer is compelled to think about the intertwining structural and narrative layers and the events that lead to amelias deportation together with ahmeds 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 convergingfates strategy while some scenes are riddled with coincidence misled by the circulatingobject 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 nationstate to define the goals and values in the global war on terror in conclusion this analysis deconstructs babels deviant structure as a parallel artifact of the films thematic critique of statecentered politics in the current network society the multiprotagonist 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 susans 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 linksand 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 nationstate as the basic unit of political activity instead babel promotes more balanced transnational political practices grounded on a cosmopolitan understanding of humanity at large

changed the course of contemporary history in more than one sense including the revitalization of the socalled war on terrorism for craig calhoun 911 is the date on which the noncosmopolitan 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 statecentered 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 nationstate as gerard delanty emphasizes the awareness of global interdependence in the postcold 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

introduction covid19 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 stayathome ordering travel and mobility restrictions and other strategies to flatten the covid19 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 inrestaurant 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 finedining 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 finedining experience this became an issue during lockdown because of the chefs 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 textmining approaches to explore the evolution in consumer sentiments and to analyse the change in the overall sentiment from the finedining 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 finedining industry in the prepandemic 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 21 impact of the covid19 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 stayathome orders restricted peoples movement by stringent enforcement causing major disruptions to the industry 1112 it has also been estimated that 134 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 in march 2020 in the early stages of the pandemic the global tablebooking website opentable launched the state of the industry website to showcase how covid19 has affected restaurants worldwide 14 the study has been ongoingthe data which are being continuously collected are based on a sample of over 20000 restaurants on the opentable network and illustrates the number of seated diners from online telephone and walkin reservations or in other words the number of customers that dined in restaurants during the pandemic in comparison with the prepandemic days in 2019 14 the restaurants provide opentable with information on their inventory which has enabled the company to create a detailed and accurate yearoveryear comparison comparing the same days of the week in 2020 and 2021 to the same day of the week in 2019 15 the data published by the company clearly indicate a significant drop in restaurant bookings at a global level from midmarch 2020 compared to midmarch 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 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 the percentage improved to below 50 in the 3rd semester of 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 covid19 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 covid19 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 decisionmaking behaviors collecting data for us consumers during prepandemic and postpandemic times and concluding that this sanitary crisis has dramatically altered the consumer needs shopping behavior as well as the postpurchase satisfaction level there is a public hesitance towards eating out postcovid19 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 drivethru 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 prepandemic levels in diningin trends is unlikely restaurant formats will look different after the pandemic with changing consumer behaviour regarding digital ordering as well as the drivethru 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 covid19 era is currently uncertain therefore substantial research is required to evaluate how the industry might recover and survive the new normal of the covid19 world 21 impact of the covid19 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 prior to the covid19 crisis the hotel and restaurant industry in romania was blooming it had a total of 40000 entirely romanianowned companies with a total turnover of eur 5 billion and an estimated 400000 employees representing a total of 10 of the total employees from the private sector 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 covid19 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 according to statistics released by the romanian hotel and restaurant association 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 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 covid19 global shock unavoidably under the influence of a global crisis caused by an infectious disease the individuals behaviour will adapt to the new contextthe world during and after the pandemic which will give birth to a series of changes in the preferences attitudes and cognitive choicemaking 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 covid19 epidemic crisis has had on restaurant demand at this point the emphasis is going to shift towards consumers and the key role that the covid19 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 emotionsboth positive and negativeand affect their future willingness with regard to dining in restaurants 16 peoples beliefs inform their behavioural intentions 25 covid19 has significantly impacted peoples emotions meaning that it has had undeniable consequences for individual happiness and achievement in their decisionmaking processes peoples 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 individuals successful attempt at achieving a goal and negative anticipated emotions referring to an individuals 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 and external factors have gradually adopted new consumption patterns people are no longer interested in holidays and various other leisure activities including inrestaurant 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 individuals 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 covid19 from a large number of twitter postings a hybrid technique to finding sentiments on ordinary tweets with polarity calculations was developed in a machinelearningbased 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 covid19 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 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 the hbm is positively influenced by three factorsthe perceived susceptibility the perceived severity and the perceived benefits and one negative factorthe perceived barriers or costs 4 29 the positive factors are visible in the context of consumer behaviour in relation to restaurant dining during the covid19 pandemic perceived susceptibility captures the individuals perceived risk of becoming infected with the sarscov2 virus perceived severity captures the individuals perception of the severity of the covid19 infection and the perceived benefits refer to peoples awareness that avoiding restaurant dining will reduce their risk of infection 4 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 authoritiesfull lockdown being one of the most drastic measures taken during the covid19 pandemic aimed at encouraging socialdistancing and limiting human interaction and by doing so minimising the spread of such a highly contagious virus 424 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 covid19 pandemic has reshaped consumer behaviours creating new consumer segments 26 the study identifies four major consumer groups that have emerged during the pandemic save and stockpile those that are not so much concerned about the present but worried about the wellbeing of their families and the longterms effects that the pandemic will have on their lives cut deep 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 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 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 januaryjune 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 restaurants precarious position into account before evaluating the service quality of a restaurant despite the fact that restaurants reopened in may with capacity limitations and socialdistancing guidelines patrons were found to have a generally good view of their eating experiences in june sentiments regarding food and place hit an alltime 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 fullservice 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 covid19 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 foodtruck counterpart of covid19 hundreds of ghost kitchens have emerged in the last year either as part of established restaurant chains or as standalone businesses estimated to reach an almost usd 1 trillion commercial potential by 2030 39 operators from the limited as well as the fullservice spectrum are looking forward to a return to dinein business even models that place a large focus on inperson encounters claim that customer demand for offpremises services will persist long beyond covid19 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 guests 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 finedining sector will maintain and potentially extend its focus on outdoor eating 39 finedining establishments that are still closed have limited visitor counts or do not provide deliverytogo options are under the most strain many of these concepts are still seeing 30 to 40 samestore sales drops and will likely only see a modest rebound over the next few months as macro forces begin to replace covid19 worries and customers continue to be wary of dinein 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 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 sectors longterm survival from an industry perspective restaurants which are highly reliant on facetoface 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 finedining 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 inrestaurant dining to dishes that are suitable for takeaway 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 prepandemic 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 restaurants 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 homedelivery services which is something that the prepandemic kaiamo did not provide to their clients 42 the artist another renowned finedining 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 homedelivery 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 restaurants instagram page once again proving that businesses have understood the new customer behaviour and adapted their prepandemic 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 844 given that the dark cloud of the pandemic is still ongoing the recommendation based on the findings of this research is that all finedining restaurants should embrace adequate mechanisms in order to survive in the foreseeable futureadaptation 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 finedining 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 latelier 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 20102019 and 2020the present the research will take into account a comparative analysis of consumer sentiment for these two periods the sample of reviews extracted from tripadvisor through webscrapping 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 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 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 and during the pandemic the research reveals a sharp decline in client reviews as a result of the strict measures imposed by the pandemicmeasures that also included closing down restaurants when customers leave feedbackwhether it is to complain or leave a flattering reviewthere is always an underlying emotion having access to the right data at the right time can be a gamechanger when it comes to making decisions that boost customer satisfaction and loyalty online reviews are still as crucial as ever during covid19 during the covid19 crisis timely online reviews might assist potential customers in getting the most uptodate 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 covid19 crisis online reviews have become one of todays most powerful marketing tools influencing customer behaviour with an astonishing 91 of 1834yearold consumers claiming that they trust online reviews as much as personal recommendations 4546 consumer online reviews play a critical role and have important consequences from a managerial point of view customers become objective voices with more than 75 of consumers taking peer reviews into account when planning a holiday a study by dacunto 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 wordofmouth 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 ecommerce 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 23000 tripadvisor users from 12 markets across hotel restaurant and attraction reviews revealing that more than four out of five 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 supported the same conclusion 53 the research methodology combines elements from two relevant mining analysescontent and sentiment analysesin order to explore customer sentiment in both the prepandemic 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 finedining 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 wordcloud 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 to 5 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 prepandemic and pandemic using the formula average sentiment score sum sum total words count 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 25 very positive for 25 to 5 negative for a score ranging from 1 to 25 and very negative from 25 to 5 in the second step based on the values of the average sentiment score we applied the welch twosample ttest in order to highlight reliable change in the average sentiment in both periods as well as a twosample differenceofproportions ttest 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 languagepolarity sarcasm emojis comparative sentences or double negativesreferring to many inbetween terms such as not so bad or kind of good which imply average emotion 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 restaurants performance in order to identify the ways in which customers describe their finedining restaurant experience in general as well as in the prepandemic and during the pandemic the wordcloud analysis revealed that the most common words characterizing all finedining restaurants from our sample are food restaurant service bucharest experience menu wine and excellent the sentiment analysis can experience some difficulty in understanding a few intricacies of human languagepolarity sarcasm emojis comparative sentences or double negativesreferring to many inbetween terms such as not so bad or kind of good which imply average emotion 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 restaurants performance in order to identify the ways in which customers describe their finedining restaurant experience in general as well as in the prepandemic and during the pandemic the wordcloud analysis revealed that the most common words characterizing all finedining restaurants from our sample are food restaurant service bucharest experience menu wine and excellent analysing the distribution of the most positive and negative words before and during the pandemic the following can be highlighted analysing the distribution of the most positive and negative words before and during the pandemic the following can be highlighted • the words characterizing the finedining restaurants prepandemic 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 finedining restaurants remain almost the same namely food restaurant service menu dishes experience bucharest tasting staff or chef therefore the finedining 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 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 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 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 • 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 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 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 • 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 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 prepandemic period vs the pandemic period 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 finedining 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 twosample ttest were explored thus the modal sentiment even if characterized by a small decrease was slightly positive from an average of 203 in the prepandemic to almost 149 during the pandemic revealing a decrease in the degree of positivity an analysis of the evolution of the customers sentiments prepandemic as well as during the pandemic reveals the same decrease in the positivity 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 twosample ttest reinforced the same conclusion of a true statistical difference in the average customer sentiment across both periods as the probability of the welch ttest was smaller than the 5 significance level demic reveals the same decrease in the positivity 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 twosample ttest reinforced the same conclusion of a true statistical difference in the average customer sentiment across both periods as the probability of the welch ttest was smaller than the 5 significance level whether this difference is due to more positivity towards the prepandemic or more negativity towards the pandemic can be determined using the twosample differenceofproportions ttests whether this difference is due to more positivity towards the prepandemic or more negativity towards the pandemic can be determined using the twosample differenceofproportions ttests the empirical results of the ttests 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 being smaller than a 1 significant level additionally the difference in the ratios is for positivity 0157 meaning that the prepandemic period has a 0157 higher ratio of positive sentiments compared to the pandemic period for the negativity degree the prepandemic negative ratio is 0087 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 explained very well the cooccurrence of positive and negative emotions stating that a couple has dinner at a finedining 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 offpremises sales as dinein activity fell alongside the increase in covid19 cases traditionally offpremises food sentiment has always been lower than dinein 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 covid19 has been the restaurant industrys greatest challenge to date as well as a severe publichealth 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 precrisis sales levels the study examined online reviews on romanian finedining 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 covid19 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 readapt 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 pandemicmeasures 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 finedining 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 finedining experience before the pandemic is characterised by food service restaurant bucharest experience menu and wine while in the pandemic the words characterizing the finedining restaurants remain almost the same namely food restaurant service menu dishes experience bucharest tasting staff or chef therefore the finedining 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 finedining 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 prepandemic were excellent nice and amazing and they remained almost the same during the pandemic the overall consumer sentiment in the direction of the restaurants analyzed is positive the covid19 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 restaurants services than before the pandemic this is another thing that the restaurants had difficulties in when adapting their operations for the pandemic 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 restaurants 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 covid19 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 finedining industry especially with regard to understanding the impacts of the covid19 pandemic on this sector despite this papers 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 covid19 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 in comparison to the prepandemic period 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 everchanging new normality as a result yearbyyear analysis is recommended for the next five years in order to gain a deeper understanding of what the postpandemic 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 informed consent statement individuals consent was waived due to reason of using online reviews

this research paper aims to analyse how consumer emotions have evolved during the pandemic period in comparison with the prepandemic period in relation to restaurant demand in the romanian finedining industry and uses valuable information based on socialmedia 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 choicemaking processes the article takes into account a comparative analysis of the consumer emotions between the precovid19 pandemic period 20102019 and the pandemic period 2020present based on the online reviews provided by customers for five finedining restaurants from bucharest the capital city of romania the artist relais chateaux le bistrot francais casa di david kaiamo and latelier the research was based on two mining analysescontent analysis and sentiment analysisand explored the emotional intent of words with the data being collected from tripadvisor through webscrapping the empirical results defined the finedining 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

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 12 in this context informal carers provide care beyond normal expectations within a preexisting relationship such as assistance with personal care household activities or practical support and generally do not receive payment for the care they provide 34 over the last 15 years three carerspecific preferencebased instruments have been developed to measure outcomes for economic evaluations the adult social care outcomes toolkit for carers 5 carerelated quality of life instrument 6 and carer experience scale 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 28 million informal carers with over a third acting as the primary carer ie the person who provides the majority of care 11 in 2020 informal carers provided an estimated 22 billion hours of care on average 786 h per year or 15 h per week 1112 if services were purchased from formal care providers the replacement costs would be 779 billion almost 40 of the total spending on health in australia in the same year 1113 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 decisionmakers on actual societal costs increasing the chance that welfare optimising decisions are made two recent studies have investigated the relative construct and discriminative validity testretest reliability and responsiveness of the europeandeveloped ascotcarer carerqol and ces in a survey of australian carers 1415 studies in england have also compared ascotcarer ces carerqol and euroqol5 dimension5 level 1416 these studies indicate that the instruments tap into different constructs of carerrelated qol and caring experiences reflecting the original purpose of the instruments and suggests the ascotcarer ces and carerqol cannot be used interchangeably 1617 the ascotcarer was developed to measure social carerelated qol and support of carers in the setting of policy and formal support interventions 518 whereas the carerqol measures the impact of informal care on carers qol combining the burden of caring and valuation of their wellbeing in the context of an evaluation in health care 6 the ces captures the caring experience rather than carers qol per se 19 validation has been investigated for the constructs in each of the instruments the ascotcarer 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 carerrelated 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 instruments constructsdomains measured as proposed 24 crosscultural 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 ascotcarer 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 statewide notforprofit 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 carerrelated preferencebased instruments 15 and exploratory factor analysis 17 setting and participants adults australian residents who selfidentified as primary informal carers and able to read the english written study questionnaire were invited to complete a webbased 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 researchers 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 there are seven domains in the ascotcarer a preferencebased instrument of carers social carerelated quality of life including control over daily life occupation social participation and involvement personal safety selfcare time and space to be yourself and feeling supported and encouraged 521 the content of the ascotcarer was developed from a literature review focus groups and interviews with carers and care managers 31 and semistructured interviews with carers 1832 carerelated quality of life carerqol contains two sections the carerqolvisual analogue scale which measures wellbeing and the carerqol7d which measures subjective burden 633 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 623 carer experience scale there are six dimensions in the ces a preferencebased instrument of caring experiences activities outside caring support from family and friends assistance from organizations and the government fulfilment from caring control over the caring and getting on with the care recipient 7 the content of the ces was developed from semistructured interviews with carers in the uk and a metaethnography 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 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 ascotcarer 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 instrument plus free fig 1 questionnaire flow positivenegative 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 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 instrument and following each question how important is this to your quality of life as a carer ˆcra caregiver reaction assessment social isolation three item ucla loneliness scale aqol8d assessment of quality of life8 dimensions text question on whether any aspects of carer qol were not mentioned in the instrument instrument plus a 5point likert scale of the importance of each domain within the instrument s or complete the instrument only finally all respondents were invited to rank the top five most important aspects of caring from most to least relevant other instruments were also completed by all participants in the final part of the questionnaire for use in the broader project 1517 data analysis analyses were conducted in stata statistical software release 17 34 qsr nvivo software© 35 and microsoft excel 36 instruments were scored using preferencebased 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 positivenegative questions and instrument missing domains questions were imported into qsr nvivo software version 11 35 for analysis to identify specific factors influencing respondents carerelated qol a fourstage content analysis procedure guided the coding of the openended 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 3738 responses for each instrument and question were coded separately coder one spent time noting any preliminary ideas codes and themes before building categories and with these a coding structure where responses contained more than one themesubtheme they were coded into each coder two reviewed the coding structure and relevantfree 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 chisquare 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 and had completed undergraduate and postgraduate education just over half of the participants were employed while the other half were retired or engaging in housework duties including caring 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 and had been caring for 24 months relationships with care recipients included children parents partners and other family members or friends with their most common medical condition being chronic diseases or disabilities followed by mental health problems relevance the openended responses resulted in 244 units of data and identified eight themes behaviourmood of care recipient caring responsibilities finances health own life perceptions of carers relationship with care recipient and support although the qualitative positivenegative 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 subthemes 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 subthemes presented in online appendix 2 there was a wide diversity in the openended responses the number of responses ranged n 2433 for each openended question likert responses to the importance of each domain were categorised into not important neutral and important and aggregated within each instrument the total instrument importance shows that carers in our sample judged all three instruments as important and ≤ 7 not important there was no statistically significant difference between the ratings across the three instruments similarly the importance of individual domains within each instrument indicated that all the domains for each instrument were important aspects of crqol domains most frequently considered important were the ces domain of getting on with the care recipient and activities outside of caring and carerqols mental health problems domains deemed least important were for ascot carers personal safety and control over daily life and carerqols financial problems table 3 summarises the instrument domain ranking activity the top five ranked domains were the same using either analysis method only the third and fourth positions were reversed comprehensiveness after completing the instrument very few participants reported that the carerrelated instruments covered all aspects affecting carerelated qol carerqol and ces content analysis of this question for each instrument 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 ascotcarer carerqol and ces were to this population behaviourmood 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 ascotcarer where the most preferred among english carers 21 whereas our australian sample found selfcare and time and space to be yourself to be the most important suggesting that with further investigation australian preference weights for the ascotcarer may be in need of development in our sample the importance of domains in the carerqol and ces 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 2223 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 carerrelated 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 selfreported qol aspects not captured by eq5d5l 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 align with the construct of the instrument and also fit with other considerations alternatively respondents may have interpreted the questions differently or focused only on certain portions of the question a content analysis of the endoflife 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 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 there is no support for carers that i know of in the early days after my husbands stroke there was some support but everything is capped at a certain amount of visits and after that you dont meet the criteria anymore so youre on your own i have not had a proper break from my caring duties for more than 2 years i care for my husband 247 no one works those hours in paid employment i love my husband and wouldnt have it any other way but to have support and know help is only a phone call away would be great when we look like caregivers who look like they have all the bases covered you receive less support this program has now been defunded so i wont have the opportunity to meet with the other carers monthlybimonthly and the support worker has lost his job so i will no longer have him as a supportsource of assistance with my caring responsibilities frustration with government departments and caring organisations who because they are underfunded over committed or dontcant do their jobs effectively i am constantly told they can or will help then simply do not carry out their promises and or dont follow up as promised government financial assistance coded to support theme 1 3 found between carerqol and ces support items and also for relational problems 17 content andor face validation of the three instruments has not been performed with australian carers so detailed information of how each instruments 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 1517 however the qualitative component of this study suggests that some differences in question interpretation may exist the majority of subthemes related specifically to the care recipient however only two domains include aspects of carer qol that are influenced by the care recipient consideration was given to a similar domain in the development of the ascotcarer however it was omitted because it did not fit with the construct of the instrument 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 71516 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 245 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 impactburden 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 instruments 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 ascotcarer 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 ascotcarer 31 however it was excluded as it was outside the scope of the instruments purpose although health was not considered as a separate domain in the ascotcarer it is captured by the lowest qol response option for each item and indicates that the carer has highlevel 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 subthemes 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 rollout of a new government support system national disability insurance scheme 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 a greater proportion of female carers and a higher percentage of carers providing more than 30 h of care per week compared to the australian population of primary carers 1112 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 selfselected via newsletter advertising and to reduce burden randomly allocated to one additional activity described in this paper this resulted in a different subgroup completing each subgroup characteristic differences include the positivenegative 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 openended components of this study were embedded in a larger quantitative study 1517 so there was no opportunity to apply qualitative techniques such as facetoface 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 respondents understanding mentally processing and response to materials would help with understanding these differences cognitive interviewing evidence is present for the ascotcarer in england 183132 and during its translation into german 4647 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 bestworse scale valuation exercise 7 the ascotcarer and carerqol used the general population imagining a hypothetical state of being an informal carer using bws exercise and a discrete choice experiment respectively 2122 the inconsistencies with our sample may be due to the differences in sample and also between stated different methodology using preferences or revealed preferences 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 culturalethnic difference appear in the free text responses however with a very small number of participants born outside of australia andor speaking a language other than english these differences were not explored in this paper a real opportunity exists for future research in this area of an australian population conclusions openended 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 wellbeing and spillover effects affecting carer qol with thought to the risk of double counting the ascotcarer 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 andor 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 ethical approval the questionnaire and methodology for this study was approved by the deakin university faculty of health human ethics advisory group burwood australia and through the carers victorias 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 deidentified format open access this article is licensed under a creative commons attribution 40 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 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 articles creative commons licence unless indicated otherwise in a credit line to the material if material is not included in the articles 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 creat iveco mmons org licen ses by4 0 publishers note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations

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 carerelated quality of life instrument and carer experience scale capture these aspects in the australian context methods online questionnaires were completed by australian informal carers sociodemographics openended questions positivenegative 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 preferenceweighted value sets reported in another paper content analysis was used to analyse the openended responses chisquared test looked at differences in domain importance descriptive analyses summarised all other information results eight themes were identified behaviourmood 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 behaviourmood 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 recipients health and wellbeing on carer qol should be considered along with spillover effects a content andor face validity analysis is required to confirm differences in item interpretation in australian informal carersinformal care • outcome measurement • carerrelated quality of life • preferencebased measures jessica bucholc

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 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 even in the field of education a lot has changed as learning can be provided without the physical presence of the teachers andor 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 covid19 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 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 2020 bánhidi dobos nemeslaki 2020 to achieve this specific actions were proposed one of them is the digital agenda for europe which aims to define the key role that ict will play in europes development the dae aims to strengthen european economy by providing sustainable economic and social benefits from a digital single market 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 472 final and very fast internet by 2020 part of the daes targets were egovernment and the reuse 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 egovernment services and reuse of public data at local regional national and european levels 743 final directive 201337eu the dsm is a prerequisite for eus transformation towards the digital revolution of the 21st century 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 startups fostering better services at better prices and creating new sources of employment where advanced digitally skilled employees will be valuable 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 as digital competence has become key for citizens to participate in todays social economic and civic life the digital education action plan adopted in 2020 will reset education and training for the digital age 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 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 the significant innovation of the desi is that it represents an overall index that tracks the evolution of eu member states the desi is a composite index consisting of five dimensions corresponding to five eu principal policy areas connectivity human capital use of internet 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 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 decisionmaking 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 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 and the effect of several socioeconomic factors on the desi is also examined 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 20142019 using repeated measures anova to highlight statistically significant interyear differences on each dimension to that end the five dimensions of the desi are studied over a sixyear period using the corresponding desi reports 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 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 in the current study more factors were in the european union α socioeconomic perspective taltech journal of european studies tallinn university of technology vol 13no 2 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 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 longterm 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 studied the digital evolution of eu member states during 20142019 they also examined the position of the eu at a global level comparing the digital progress of the eu with noneu countries rakićević et al studied the overall index in the desi 2018 report using logical clustering to measure the proximity among countries forming five 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 studied the correlations and partial correlations of the five dimensions in the desi 2018 report moreover they also grouped eu member states in five clusters using hierarchical clustering according to these results adequate knowledge of the partial correlation between the dimensions of the desi will help policymakers in decisionmaking process to improve competitiveness at local regional and european level sevgi used data from the desi 2020 report and by applying the kmeans algorithm grouped the eu member states into four 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 espingandersen in south europe central and eastern europe 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 social situation and financial situation 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 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 with a small difference from the first category and by the countries of conservative welfare regimes finally the rest of the countries 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 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 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 coplot 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 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 welleducated population revenues from exports and public administration which is supported by central governments policies and political initiatives seem to be the key factors of success stavytskyy kharlamova and stoica 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 20142018 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 studied the effect of four socioeconomic factors on the desi and on its dimensions in 20162018 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 investigated the convergence of digitalization in the eu in terms of the desi in each member state during 20152020 taking into account indicators representing each countrys 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 sixyear period from 2014 to 2019 using repeated measures anova to highlight statistically significant interyear differences on them moreover eu member states are grouped into the optimal number of classes based on 30 indicators applying the kmeans 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 effectsan effective tool when there is dependence in the data the structure of the desi the desi has a threelevel structure with five dimensions each dimension consists of subdimensions and these in turn of indicators in total the 5 dimensions consist of 12 subdimensions 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 the availability of fast broadband access providing at least 30 mbps and the availability of very highcapacity fixed networks while taking into account retail prices mobile broadband includes 4g coverage mobile broadband adoption and 5g connectivity readiness indicator digital connectivity is considered a social right in the eu 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 and ict graduates that empower the workforce to develop new digital goods and services 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 using modern communication activities and activities transactions such as online shopping and banking the integration of digital technology dimension measures the digitization of businesses and ecommerce 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 minmax 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 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 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 20142019 data from both the european statistical office and the world open data bank were used real gross domestic product per capita were retrieved from the world open data bank and the consumption of renewable sources the lack of corruption the percentage of gdp spent on basic and applied research and experimental development the average weekly working hours the percentage of gdp for preprimary to tertiary education and the unemployment rate were retrieved from eurostat the data refer to 28 countries that belonged to the eu in 2019 observed over a period of six years the statistical analysis was conducted using r 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 20142019 to study the evolution of the five dimensions of the desi first the normality assumption of the data was tested by the shapirowilk normality test when the normality assumption was met as in our case the anova test in a repeated measures design was utilized when the null hypothesis of repeated measures anova was rejected a posthoc analysis was performed to explore differences between all possible group pairs using tukeys test to group the eu member states with respect to their performance in the five dimensions of the desi the kmeans clustering method was implemented as it is simple fast and efficient moreover kmeans 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 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 were constructed which are parametric linear models for repeatedmeasures data 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 rs lme4 package 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 twodimensional fixedeffect vector β consists of the mean intercept β 1 and the common slope β 2 the onedimensional randomeffects 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 the above two models were compared using the function anova in r and model 2 was selected as optimal based on the akaike criterion in this model independent variables were added 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 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 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 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 tukeys 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 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 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 and the countries with low performance in light grey 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 lowand highperformance 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 in this model independent variables were added in model 3 the variables rnrgconsumption unemployment and corrlack are not statistically significant and were sequentially removed from the model that leads to the final one it is observed that all factors have a statistically significant impact on the desi in model 4 the average desi increases by 172 per year for constant values of the variables gdp per capita average working hours education expenditure and r d expenditure and by 199 for each unit of gdp per capita growth for constant values for the rest of parameters it also increases by 081 for each unit of increase in the percentage of education expenditure and by 199 for each unit of increase in the percentage of r d expenditure while it decreases by 157 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 eu28 the digital evolution of eu member states is monitored under eu digital policies established since 2010 by the dae and europe strategy 2020 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 472 final recommendation 2010572eu 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 and grigorescu et al 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 ecommerce and the digital transformation of businesses to take place to formulate and implement a digital transformation strategy is a timeconsuming task 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 egovernment systems is rather challenging 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 bánhidi dobos and nemeslaki borowiecki et al and sevgi and liu where they formed five and four clusters respectively a cluster consisting of countries with high performance and a cluster of countries with low performance in all dimensions of the desi were formed considering that the northeuropean countries are more digitally developed compared to the rest of the eu countries these results are not surprising over the sixyear 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 in addition our results indicate that the grouping of eu28 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 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 stavytskyy kharlamova andstoica andandrei et al have also concluded the most economically developed countries seem to invest more in the digital transformation of both the economy and society moreover the desi is positively affected by educational expenditures as scupola also suggests in contrast to marino and pariso countries which invest more in education from preprimary 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 factorsthe unemployment rate the consumption of renewable sources and the lack of corruptionit 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 twoyear 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 longterm policies and supportive initiatives need to be implemented to foster digital transition considering each countrys 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 the related communication released in 2016 does not seem to fulfil its target 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 facetoface 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 in the new digital era acquiring the relevant knowledge will make citizens active participants who are able to use internet services such as ebanking 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 and infrastructures in business digital transformation 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 in addition attention must be given to open data policies regarding reusable and available data in national data portals 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 europes 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 20142019 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 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 covid19 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 semimarkov 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

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 20142019 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 20142019 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

the roi conundrum this does not actually mean such investments have a poor return its 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 longterm community health but this form of valueadded is not captured as revenue or savings by the health sector investora classic wrong pockets problem in the same way improvements in housing conditions financed by a housing authority or a reduction in violencecaused 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 wellbeing 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 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 partners 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 healthhuman 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 midatlantic 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 drivers seat it has partnered with the pathways community hub institute 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 healthrelated social needs commonspirit along with competing health systems in each area funds a community bank that helps fund the hubs 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 coopetition 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 decisionmaking 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

in a recent jama health forum article glied and daunno 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 returnoninvestment 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 feeforservice medical practicesso 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

introduction research over the past two decades have established the difficulties of recruiting ethnic minorities to medical and behavioral research studies researchers are beginning to understand that such populations often have structural cultural and language barriers that hinder their participation furthermore reasons for nonparticipation are rooted in cultural and religious beliefs participation rates for pacific islanders 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 this paper reports on pilot data regarding the reasons that deter pi participation in biospecimenrelated research epidemiological data have shown that pis suffer disproportionately high rates of health disparities compared with most other racial and ethnic groups 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 some participants are reluctant to participate because of selfperceived 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 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 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 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 collectionrelated 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 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 communitybased participatory research approach pi community leaders from five communitybased agencies in los angeles orange and san diego counties worked with the academic researchers to conduct this mixed methods study the communityuniversity 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 wordofmouth 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 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 andor treatment activities measures approved by the institutional review board at claremont graduate university the study instruments consisted of a 46item paper and pencil questionnaire and a semistructured oneonone 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 and the acculturation scale 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 biospecimenrelated 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 oneonone meetings with each respondent after they were recruited to the study and agreed to participate each meeting ranged from approximately 1 to 15 hours 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 100 basic univariate data analyses were conducted to find the mean age and gender ethnic and educational level distributions frequencies are presented in table 1 atlasti 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 subtheme if appropriate 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 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 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 twentyone 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 posthigh school education forty one respondents shared that they had some reservations or reluctance about providing their biospecimens for research a total 533 of the respondents aged 65 years or older had reservations about donating biospecimen samples compared to 833 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 education level was not related to whether or not a respondent had reservations a majority of the female respondents expressed fear as their main reason for having reservations about donating their biospecimen sample followed by lack of knowledge and god or spirituality male respondents shared similar reasons except that fear was cited less often than lack of knowledge among males when analyzed by age respondents over the age of 65 years indicated that fear was their main reason for having reservations while those younger than 65 years cited lack of knowledge as their main reason …a lot of our polynesian society doesnt want to know they actually feel that as long as they dont know it is not happening cause theres a lot of people still living in the back you know you know back in the olden days when you dont talk about it you dont 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 …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 …id rather leave that up to god female marshallese cloning scrutiny of genes 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 dont i back away from it male native hawaiian yeah i just dont 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 us 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 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 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 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 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 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 us or around the world for instance a majority of our respondents were us 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 twothirds 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 userfriendly informed consent form participation enrollment and retention of minorities may be improved

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 communitybased 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 0012 no significant gender differences were found p084 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 biospecimenrelated studies

introduction since the first case reported in december 2019 in china the severe acute respiratory syndrome coronavirus2 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 due to a higher transmission rate than other coronaviruses and a high proportion of asymptomatic infectious people the global pandemic has grown significantly causing nearly 2714 million cases with 53 million deaths according to the world health organization in korea since the first case of covid19 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 however due to increased outdoor activities largescale gatherings during the holiday season and seasonality the number of newly infected cases grew dramatically to more than 1000 cases daily mostly driven by a substantial increase in infections in the capital region where 2592 million people live within 1185126 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 in recent studies on covid19 historic evidence showed that socioeconomically vulnerable individuals were more likely to have higher incidence and casefatality rates of covid19 this indicates that underlying socioeconomic gradients are strongly associated with the distribution of incidence and fatality rates of covid19 due to variations in personal hygiene access to testing and treatment compliance level with social distancing policy and the ability to work remotely in recent studies regarding covid19 in the united states lowincome 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 in addition to individual socioeconomic vulnerability arealevel socioeconomic disadvantages have consistently been associated with covid19 incidence arealevel socioeconomic status tends to depend on territorybased communities that characterize human society because of a shared socioeconomic basis commonality in available services living culture and lifestyle arealevel socioeconomic measures have been identified in various ways and typically measured using an aggregate variable or a composite measure each measure represents a unique contribution to the socioeconomic association specifically associations with covid19 were consistently observed for median household income and minor ethnicity but findings for deprivation index and unemployment rate were inconsistent indicating that arealevel ses measures have different values across time and place and that how they are measured is important 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 arealevel socioeconomic inequalities in covid19 infection based on the high correlation between arealevel ses and mobility reduction 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 arealevel ses on covid19 incidence depends on the level of mobility this concept may be particularly relevant in countries like korea where socioeconomic inequalities in covid19 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 covid19 incidence compared to other countries nevertheless a better understanding of regional disparity in covid19 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 covid19 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 whether arealevel socioeconomic measures are associated with covid19 incidence at the municipality level whether the associations differences in the association between socioeconomic inequalities and covid19 incidence in two different epidemic phases with disparate social distancing enforcement and whether socioeconomic inequalities in covid19 infection are mainly due to mobility differences materials and methods study base overall korea experienced favorable outcomes of covid19 compared with other countries in terms of incidence and mortality through the pandemic and the study period to evaluate the effects of socioeconomic inequalities on covid19 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 in which less than 100 mean daily cases were confirmed with the eased social distancing regulation and rebound phase in which more than 100 mean daily cases were reported with stricter distancing imposed 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 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 began from may 6 to august 14 2020 and stricter social distancing measure was enacted from august 15 2020 socioeconomic status measures and covariates the information on covid19 incidence as an outcome variable was collected from 229 municipalities and compiled from the kcdc and the local administrations official websites as listed in table 1 six arealevel socioeconomic factors were used to investigate the effects of inequality on the incidence of covid19 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 areaspecific income level material deprivation index 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 zscores 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 singleparent household and school dropouts between 9 and 24 years of age 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 between 30 and 64 years of age 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 in addition the municipalityspecific economic activity variable including the volume of traffic for mobility at risk represented by a zscore was added mobility at risk was equal to the proportion of the traffic volume of workrelated movement utilizing public transportation which was calculated by multiplying the volume of public transportation and the volume of worksrelated traffics this variable was obtained from a transportation survey conducted by the korean transport institute in 2018 finally three covariates namely municipalityspecific median age population density and the number of healthcare workers per 1000 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 of korea university granted an exemption for this study statistical analyses several steps of the analytical process were applied to examine socioeconomic inequalities in covid19 incidence due to the nature of spatial data spatial autocorrelation on the ses variables and three covariates were examined using global morans i test before investigating the association between ses measures and covid19 incidence the statistical significance of the global morans i was estimated with 999 simulations following identification of the presence of spatial autocorrelation in socioeconomic indicators the association between socioeconomic measures and covid19 incidence was estimated as an incidence rate ratio using a spatial negative binomial model with marten correlation function for spatial correlation term to account for potential confounding factors adjustment was initially made for three covariates in addition we conducted a regression with a further adjustment for economic activity to evaluate the mediating effect of mobility on the association between arealevel ses and covid19 incidence 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 model was used to account for spatial autocorrelation of residuals by adding a spatial random effect using intrinsic conditional autoregressive function and extra residual term for spatially independent variation that was independent identical and normally distributed as follows y i ∼nb y i number of covid 19 cases by municipality i π i r i r i λ i e λ i log αlog population i β 1 ×ses ik n j2 β j ×covariate i u i ε i u 1229 ∼icar wσ 2 u ε ∼n 0σ 2 ε u ∼n0 ic 1 ×mcγ ×wmi× 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 rowstandardized such that each row sums to 1 for interpretation of the parameters 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 burnin of 4000 iterations and a thinning rate of 10 and 50000 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 gelmanrubin statistic the deviance information criterion 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 21 with winbugs software version 143 was used to carry out given statistical approaches the map presented in this study was created by esri arcgis software version 1081 using the south korea map which is publicly available all analyses were separately performed for two different phases of the covid19 pandemic the low and rebound phases we repeated a similar analysis to estimate the relative index of inequality as a supplementary measure of inequalities in the covid19 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 rii in this study corresponds to the relative risk of the incidence for covid19 in the lowest and the highest socioeconomic strata and therefore is directed by changes in two strata 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 y i number of covid 19 cases by municipality i π i r i r i λ i e λ i log αlog population i β 1 ×ses ik n j2 β j ×covariate i u i ε i u 1229 ∼icar wσ 2 u ε ∼n 0σ 2 ε u ∼n 1 ×m cγ ×wmi×σ 2 u where x i denotes the midpoint of municipality i in socioeconomic class k with number 1 assigned to the highest class of ses as opposed to the lowest strata the midpoint was derived for each ses class in addition ses variables are likely to be mutually correlated thus spearmans correlation coefficient between two paired ses variables was estimated to exclude the correlated combinations for subsequent multivariate analyses results overview of covid19 incidence and socioeconomic characteristics the covid19 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 arealevel covid19 incidence rate as shown in figure 2 on average 127 cases were reported per area minimum maximum min max 0127 cases in the low phase and 1771 cases were reported in the rebound phase the majority of covid19 cases were reported in the seoul metropolitan area where 5028 of the total korean population resides within 1185126 km² the average nonemployment rate was 139 and 49 of households received basic livelihood security all variables in particular economic activity showed significant spatial autocorrelation in the global morans i test indicating that the association of those variables with covid19 should be measured with consideration of spatial autocorrelation generally socioeconomic measures were significantly correlated with each other 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 eg mdi and the nonemployment rate notably a negative correlation of economic activity was observed with indicators of social exclusion and poverty such as the proportion of basic livelihood security recipients but not with nonemployment rate and a positive correlation of mobility at risk was shown with national insurance contribution indicating economic activity was characteristic of affluent areas the incidence rate ratio 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 § 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 arealevel socioeconomic measures and covid19 incidence table 3 shows the estimation of irr for the association between arealevel ses measures and covid19 incidence using a bayesian negative binomial regression overall two arealevel ses measures nonemployment rate and the proportion of basic livelihood security recipients were consistently associated with covid19 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 120 113128 and 123 respectively in the rebound phase the same ses measures presented inconsistence association with covid19 incidence for example the nonemployment rate showed a significantly negative association with covid19 incidence adjusted for only covariates but for both covariates and mobility at risk while the proportion of basic livelihood security recipients had an only univariate association with covid19 incidence an economic activity indicator was positively associated with covid19 incidence rate in both the low and rebound phases when assessing the mediation of mobility at risk in the association between two ses measures and covid19 incidence the magnitude of the associations was attenuated but remained significant in the low phase but no associations were observed in the rebound phase for instance the area with a higher nonemployment rate had a higher risk of covid19 incidence in the low phase but independent associations were not observed in the rebound phase when assessed with rii nonemployment rate and the proportion of basic livelihood recipients showed a similar pattern of associations with covid19 incidence discussion in this study a significantly positive association was found between arealevel nonemployment rate and the population share of basic livelihood security recipients and covid19 incidence however arealevel socioeconomic effects were stronger in the low phase when the prevalence of covid19 was low with less strict governmental measures in other words the strength of the association of those ses measures decreased as the level of covid19 incidence rate across the country increased similarly the inequalities in the covid19 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 covid19 incidence in both phases in this context when both arealevel ses measures and mobility were simultaneously adjusted ses measures remained significant in the low phase suggesting they were independent of each other in the lowrisk period however in the rebound phase adjustment for economic activity variables showed no association between ses measures and covid19 incidence overall partial existence of covid19 inequalities in some measures may have occurred as a result of counteraction between risk raising and lowering arealevel effects among five measures of arealevel ses the areas with a higher level of basic livelihood security recipients and nonemployment rate showed a higher risk of covid19 incidence however an association was not observed for other arealevel socioeconomic measures a partial observation of arealevel socioeconomic inequalities in covid19 incidence differs from most previous studies from the united states the united kingdom and spain and is similar to a previous korean study in which no or a partial association was observed inconsistency in inequalities in covid19 incidence across measures may possibly be interpreted using the socioeconomic context of korea korean government measures were impartially imposed regarding caseidentifying processes awareness of the process access to covid19 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 arealevel 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 covid19 diagnostic testing is often delayed and choosing which patient to care for first is an issue when the number of patients is overwhelming in contrast korea has maintained a lower covid19 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 arealevel ses measures basic livelihood security recipients are mostly older adults and the age composition of this measure better reflects diagnosed covid19 cases the majority were older adults according to the korea central disease control headquarters this finding is in agreement with an individualbased korean study in which higher ses was associated with higher covid19 incidence in the older population and both higher and lower ses were associated with the younger population similarly the arealevel 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 in this study a high level of mobility was associated with an increased risk of covid19 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 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 withincity 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 arealevel socioeconomic disadvantages concerning covid19 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 arealevel ses and covid19 incidence in the rebound phase but mobility alone does not fully explain the association other vulnerabilities are likely to be involved the arealevel socioeconomic effect was stronger in the low phase when the prevalence of covid19 was low with less strict governmental measures indicating that the arealevel socioeconomic gradient is less likely to affect the variation in covid19 occurrence hypothetically the socioeconomic inequalities in covid19 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 covid19 when government public health measures were not sufficiently implemented nationwide with progression to a widespread stage 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 betterfitted 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 covid19 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 covid19 period in korea showed no significant change in mobility shaped by socioeconomic differences second the findings in this study are limited to arealevel 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 covid19 incidence furthermore it is noteworthy to investigate the impact of inequalities on the incidence of covid19 in countries with a relatively lower number of cases and during the postvaccination period to understand the direct effect of ses disparity on the infection adjusted for vaccination coverage in conclusion covid19 does not occur randomly but follows socioeconomic patterns socioeconomic inequalities in covid19 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 covid19 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 covid19 incidence and partly explains the correlation between arealevel ses and covid19 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 articlesupplementary material further inquiries can be directed to the corresponding author supplementary material the supplementary material for this article can be found online at 2022840685full supplementarymaterial 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 publishers 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

objective arealevel socioeconomic status ses is associated with coronavirus disease 2019 covid19 incidence however the underlying mechanism of the association is contextspecific and the choice of measure is still important we aimed to evaluate the socioeconomic gradient regarding covid19 incidence in korea based on several arealevel ses measures methods covid19 incidence and arealevel 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 arealevel socioeconomic inequalities in covid19 incidence between the most disadvantaged region and the least disadvantaged region were observed for nonemployment rates rii 140 95 credible interval crl 101195 and basic livelihood security recipients rii 266 95 crl 112597 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 arealevel mobility showed a higher risk of covid19 incidence in both the low irr 167 95 crl 126217 and rebound phases irr 128 95 crl 114144 when ses and mobility measures were simultaneously adjusted the association of ses with covid19 incidence remained significant but only in the low phase indicating they were mutually independent in the low phasethe level of basic livelihood benefit recipients and nonemployment rate showed social stratification of covid19 incidence in korea explanation of arealevel inequalities in covid19 incidence may not be derived only from mobility differences in korea but instead from the countrys own context

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 robotics machine learning ehealth and mobile technologies to support the health independence and wellbeing of older people agetech has been explored in terms of supporting older people to remain at home for longer to provide social connectedness support wellbeing and mental health and connect the older person to their wider community 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 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 aibased 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 assessing the intended and unintended positive and negative consequences of agetech considering who is most likely to benefit from agetech and responding to the challenges of those who experience the most significant barriers to access and use to help to ensure aibased 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 aibased 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 aibased agetech it actively addresses the social determinants of health as defined by the who as nonmedical factors that influence health outcomes by shaping the daily life and social situation of a person 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 have identified this as a wicked problem in view of three key principles of intersectionality 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 addons but have to be considered as crucial aspects when it comes to policymaking complexity complexity management and ai a main ethical issue when it comes to aibased agetech in the light of interconnected social determinants is complexity management aitechnologies are built to detect patterns in large data sets and derive algorithms for predicting future events or controlling processes in agetech aitechnologies 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 contextrich 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 aibased systems try to resolve by reducing complexity therefore aibased 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 contextinsensitive procession of data ie an oversimplifying or reductionist approach may lead to standardisation of user characteristics ignoring social determinants in technology use may negatively affect access to these aibased 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 • biasbias 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 • standardizationthe problematic aspect here is the underlying assumption that objective parameters can be defined and operationalised to identify and respond to ambiguous behaviors and situations • accesssome aibased 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 aibased technologies bias can be a result of complexity management in two ways firstly algorithmbased 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 algorithmbased system the training data is usually taken from large cohort studies 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 aibased systems and hardware devices are produced on a certain scale in order to be costefficient 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 socalled 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 aisystems learn by inferring algorithms from data sets 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 systems 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 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 sociostructural and historical issues when less health spending are applied in certain groups the algorithm assigns them a lower riskscore 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 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 age scripts can be developed based on various sources such as societal views design traditions or individual interpretations this implies a certain risk for stereotypical or poorlyinformed 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 the notion of age is fundamentally viewed as a problem to be solved by agetech although enabling agency is the intended goal limitations arise when fundamental concepts and purposes of agetech are not determined with the end users 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 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 these particular systems measure the typical gait pattern of a person and whenever the gait pattern changes andor 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 persons individual health data what is problematic is the fact that specific parameters are defined as objective indicators of health and wellbeing this suggests that primarily qualitative categories like wellbeing can be easily quantified by choosing the right parameters this is an oversimplification that ignores the rich contexts of a persons attitude towards wellbeing health and others which forces them to adapt to prefixed definitions of wellbeing 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 can lead to a standardisation of behaviour standards and standardised parameters play a key role in all datadriven 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 behaviorrelated indicators used to measure predict or evaluate healthrelated outcomes 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 eg determining blood pressure as biomarker for cardiovascu1 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 clearcut biomarkers one example is a framework for recognising and regulating emotions in older adults presented by castillo et al 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 clearcut 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 ie the regulation of a persons 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 costeffective 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 costeffectiveness 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 costsaving purposes conditioning has already been recognised as a risk in agetech what is seldom discussed is the connection between epistemological and ethical aspects in this context 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 that contradicts to the goal of personcentred care an equityfocused 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 personcentered 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 ie 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 tech1 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 aibased agetech this is especially the case with technologies that require direct interaction like humanmachine interfaces or technologies for selfmanagement and selfmonitoring common in mhealth and telehealth the lack of experience with digital technologies or affinity towards their use may thus prevent older adults from accessing them empirical evidence shows that digital literacy and health outcomes correlate with education age gender and socioeconomic status the need for complexity management in aibased agetech also affects access to agetech one important factor in this regard is diversity within the older population 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 eg between age gender ethnicity and socioeconomic status studies show that people over 65 have generally less desire and intent to use icts especially older adults with less exposure to technology throughout their work life show a lower uptake of digital health technologies other reasons that impact technology use are healthrelated comorbidities and functional disabilities eg vision impairment or difficulties in memorising passwords are barriers to digital access in this regard this is especially the case when interfaces and systems lack the appropriate level of userfriendliness agetech access and uptake is further complicated when gender is added ie 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 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 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 internalisedstigma including negative selfperceptions of being frail and in need of help when using agetech hinders technology use 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 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 aibased health technologies in the research literature these strategies are often labelled as democratisation of aibased health technologies and consist of at least three objectives diversifying training data models and algorithms engaging relevant stakeholders as well as communities in design and implementation of aibased health technologies and granting access to medical to all social groups and on a global scale diversifying training data models and algorithms discrimination and bias in aibased 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 one way to address this issue is to question existing proxies and biomarkers and to include social determinants meaning that the sociodemographic 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 if an algorithm performs poorly for specific groups additional data from these groups should be collected and induced into the machine learning process 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 also upon implementation of these technologies a local evaluation should be conducted in order to investigate hidden stratification effects a key takeaway message is that fairness should not be an afterthought or posthoc consideration 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 participatory methods for designing agetech are widely seen as ways to prevent discrimination and enable equity engaging relevant stakeholders and communities may be a crucial measure throughout the life cycle of an aibased agetech product at the research stage the perspectives of diverse end users may be required for inclusivity training data as well as usercentered technologies by using a communityengaged approach educational aspects as well as shared decisionmaking 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 using a communityengaged approach may also help to situate aibased agetech in view of contextspecific healthcare infrastructures and communities consequently technologies tailored for the specific requirements of a given context as opposed to a onesizefitsallapproach can mean that caregivers and care receivers are potentially more likely to use them however this approach has some drawbacks engaging stakeholders and communities can be a challenging and often very timeconsuming approach which also means more costintensive furthermore participatory processes need a moderation in order to integrate and balance different expectations as with agetech itself there is also no onesizefitsallapproach regarding stakeholder and community engagement in order to choose the right approach or method it has to be clarified why a stakeholderand communityengaging 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 another difficulty here is how to best involve older adults who are isolated hard to reach and who may be nontech users in the codevelopment process use of personas for usercentered design developing a persona and scenario a technique often used in technology design to ensure that the tech product is conducive to the enduser a persona is a description of a fictitious individual based on data or information from real people 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 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 sociallyresponsible and culturallysensitive way the use of personas and scenarios are intended to promote our empathy with the people who we aim to serve 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 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 3 ethical and responsible agetech previous research has also established that factors influencing digital marginalisation are multifaceted and that an intersectional approach needs to be adopted to fully understand how people can be disadvantaged by the increasing reliance on agetech 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 there are various policy pathways considered to help to ensure agetech access equity and other social determinant barriers stixs notion of actionable principles for ai policy highlights how successful actionability in policy requires going beyond aibased agetech ethics principles as a reference point and this can be achieved in part by referencing transdisciplinary theoretical perspectives from disciplines of gender studies urban studies and health sciences 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 preliminary landscape assessments multistakeholder participation and crosssectoral feedback and mechanisms to support implementation and operationalisability can be supported by integrating equitydriven theoretical models and frameworks such as the social justice framework for bridging the digital divide health equity impact assessment tool and the intersectional place perspective for agetech solutions heia originated from the health impact assessment methodology and has been heavily used worldwide over the past decade as a decisionmaking tool to facilitate the development of healthy public policy 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 this framework may be particularly useful for recognizing and responding to the multiple layers of access and use inequities that older people might experience when introduced to ai interventions last the intersectional place perspective designed to identify individual social and placebased factors that shape opportunity and oppression has been used to better understand the combined effects of the digital determinants of health and wellbeing this theoretical model can help to characterise the ways 1 3 in which ai can compound or alleviate inequity through consideration of sociocultural and environmental contextual factors that shape lifetime health and wellbeing outcomes of older people recognising the importance of intersectionality and place overall such equitydriven 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 as we have seen access barriers may arise when aibased 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 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 wellinformed design process that includes user experiences from various user groups another factor preventing certain user groups from access is contextual bias most aibased agetech is designed in highincome 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 lowincome countries disclosure and validation policies might be instruments for ensuring that the context of technology design is made transparent 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 databases consisting of training data accessible on a global scale this would provide researchers clinicians and developers from lowerincome countries the opportunity to adapt technologies to their own respective contexts of use finally empowering ehealth literacy of older adults may reduce the digital gap which is one of the main access barriers ehealth literacy could be improved by providing learning tools eg 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 aibased 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 aibased agetech equity is neither an addon nor can it be an afterthefact consideration rather equity should be the guiding principle in developing aibased agetech at the outset and should also guide its implementation as well as 1 3 the practices it enables this requires a wellinformed 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 publishers 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 12 • andrew sixsmith 13 giovanni rubeis mei lan fang andrew sixsmith

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 agetech 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 aibased agetech a critical analysis of ethical design digital equity and policy pathways is required a crucial question is how aibased 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 aibased 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 aibased 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 aibased 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 aibased agetech can be addressed

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 at northwest university applied dalcrozeinspired 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 dalcrozeinspired 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 national water resources strategy 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 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 towns 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 towns overworked water and wastewater infrastructure systems are also subject to deterioration since the early 2000s parys has experienced extensive periods of waterquality issues and infrastructure collapses in response to a request by a former premier of the free state province the sasolburgbased company sasol limited funded a multistakeholder consultation research project by the cudywat research niche at northwest 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 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 that highlight the positive influence of dalcroze in promoting social transformation within individuals local communities and the environment these activities cultivate a desire for selfexpression and communication promoting interpersonal connections and a sense of belonging and wellbeing furthermore our study draws on the findings from a previous study conducted in the town of brandfort which demonstrated the significant contribution of a dalcrozeinspired 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 dalcrozeinspired approach again this time in a different context parys this was an ideal opportunity to use dalcrozeinspired activities as a basis for constructive communication and to interpret the perceptions of municipal water users music health and wellbeing the world health organization describes health and wellbeing as a state of complete physical mental and social wellbeing and not merely the absence of disease or infirmity the positive effects of the arts on health and wellbeing 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 the growing body of literature on the transformative value and benefits of music for health and wellbeing illuminates the effective contribution of music participation to the quality of life of a community macdonald et al developed a conceptual framework illustrating that the growing multidisciplinary interest in the relationship between music health and wellbeing could enhance musical activities social therapeutic and communicative benefits paton states that music has a supportive function in enhancing a communitys emotional mental physical and social wellbeing that goes beyond purely musical entertainment or performance participatory musicmaking 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 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 music making promotes the communitys 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 small uses the term musicking to illustrate that music entails activity and adds that meaning is generated through social and cultural interactions stige views health musicking as an interdisciplinary field that promotes wellbeing through musical participation musical activities in health musicking create meaning in times of hardship and teach strategies to cope with different social problems a healthmusicking perspective supports dalcrozeinspired activities since the emphasis is on the interand intrapersonal relationships which develop through musicking to promote health and wellbeing denora developed a grounded theoretical account of how music can be understood to create conditions conducive to wellbeing the dalcrozeinspired 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 jaquesdalcroze 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 after the first world war jaquesdalcroze 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 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 in a dalcroze class students explores aspects of time space and energy through locomotor and nonlocomotor body movements movement is the link between the ear and brain leading the student to an embodied and deeply internalized understanding of music in the dalcroze approach the muscular and nervous systems develop simultaneously with the bodys natural rhythms stimulated by the auditory and visual imaginations of the musical mind this approach is explained by juntunen 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 intradisciplinary dimensions 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 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 interand intrapersonal skills as well as musical skills 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 articulatethrough movementhow they feel and express what they experience subconsciously therefore dalcrozeinspired activities were selected as the most appropriate collaborative musicmaking 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 dalcrozeinspired 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 waterrelated problems we wanted to find solutions to this critical issue in the community in the following sections we first discuss the research procedures the dalcrozeinspired workshop and the types of activities used secondly in the findings section we interpret the lived experiences of those who participated in the dalcrozeinspired workshop and their views on local waterdelivery 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 with this hermeneutic phenomenological inquiry we intended to describe the experiences all participants have in common during the dalcrozeinspired workshop a oneday workshop was held at stonehenge on vaal a conference venue outside parys to ascertain firsthand 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 northwest universitys research niche for the cultural dynamics of water 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 ethics statement a predefined ethically approved framework guided the research teams 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 datacollection process continued during the workshop while the dalcrozeinspired 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 openended 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 dalcrozeinspired 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 computerassisted qualitative data analysis software program atlasti is a useful tool to organize manage and support the process of qualitative data analysis using the nct method 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 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 descriptivelevel open coding later we entered the next conceptual phase in the dataanalysis 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 dalcrozeinspired workshop and does not elaborate on the water delivery problems and solutions that the stakeholders identified because of the dalcrozeinspired workshop the water delivery problems and suggested solutions expressed during the water meetings that followed the dalcrozeinspired workshop were included in a report to the free state provincial premier activities in the dalcrozeinspired 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 yoyo 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 another example of an instruction for an activity was pair up with someone you do not know mirror that persons 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 our choice of musicking was dalcrozeinspired 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 103389fpsyg20231176691 frontiers in psychology 05 frontiersinorg habron she agrees with their statement that the touchlike 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 they further state that touch activities are suitable to communicate intentions and feelings to others and receive their responses 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 touchcontact 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 others hands 3 selftouch 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 dalcrozeinspired 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 ngwathes stories that they suffered tremendously 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 childrens 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 atlasti qualitative data analysis software we identified the following five themes from the interviews focus group interviews photos videos and observations during and after the dalcrozeinspired workshop 1 joyful experiences when participating in dalcroze activities 2 dalcroze activities facilitate social interaction 3 the dalcroze approach transforms relationships 4 dalcrozeinspired activities foster virtues 5 music and movement support wellbeing figure 1 the suffering that the people of ngwathe endure the atlasti 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 van der merwe et al 103389fpsyg20231176691 frontiers in psychology 06 frontiersinorg 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 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 dalcrozeinspired activities enable social interaction 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 dalcrozeinspired workshop van der merwe et al 103389fpsyg20231176691 frontiers in psychology 07 frontiersinorg 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 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 ive 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 dalcrozeinspired activities foster virtues the dalcrozeinspired activities brought out an uninhibited spontaneity and honesty in participants im happy im myself im 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 peoples experience of wellbeing the photo and video data showed that participants were helping each other during the dalcrozeinspired 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 elses lead they gave recognition to each others 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 wellbeing 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 103389fpsyg20231176691 frontiers in psychology 08 frontiersinorg 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 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 oclock 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 lowerlying 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 jaquesdalcrozes own writings theme 1 joyful experiences elliott identifies enjoyment as one of the three essential values of musicmaking as a human pursuit while freeman 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 dalcrozeinspired workshop this was also a finding in a previous study that the stakeholders of the brandfort community enjoyed the dalcrozeinspired workshop experience jaquesdalcroze 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 theme 2 social integration mcguire states collective embodied practices such as singing or dancing together can produce an experiential sense of community and connectedness in the brandfort study the researchers found that the dalcrozeinspired 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 explains that musicking allows us to explore affirm and celebrate our diverse real and symbolic human relationships and according to small it is in those relationships that the meaning of the act of musicking lies jaquesdalcroze 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 wellbeing and emergent categories the four lifeworld existential of van manen form the categories of the wellbeing theme lived body lived time lived human relation and lived space these categories also relate to van der merwe and habrons conceptual model of spirituality in music education van der merwe et al 103389fpsyg20231176691 frontiers in psychology 10 frontiersinorg theme 3 transforms relationships not only can dalcrozeinspired activities facilitate social integration but they can also enable the transformation of relationships boycetillman states that words divide but sounds unite and that when a group of people makes music together unity is restored the brandfort study 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 jaquesdalcroze says i am certain of one thing that the rightlydirected will can convert mean and selfish instincts into generous and altruistic ones negative resolves into positive theme 4 virtues expressed jaquesdalcroze considers art the outward projection of love and knowledge of beauty and truth for him receive and give is the golden rule of humanity in the brandfort study the participants felt positive about being open to each others needs and feelings in the parys study openness led to people helping each other boycetillman 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 wellbeing theme 5 support wellbeing croom 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 showed that the dalcrozeinspired 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 dalcrozeinspired activities supported participants wellbeing they felt welcome relaxed present and could escape reality these aspects contribute to participants overall wellbeing jaquesdalcroze states that it cannot be denied that rhythmic movements possess a calming influence upon the nervous system conclusion moving from conflict to open communication and problemsolving is challenging for communities in crises maclaren 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 motivated this studys research undertaking and purpose conceptual replication is relevant in qualitative research as its interpretive strengths can lead to numerous discourses on the same phenomenon 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 we developed a distinctive and cumulative body of knowledge increasing understanding and moving toward a theoretical understanding 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 dalcrozeinspired activities can facilitate conflict resolution the dalcrozeinspired 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 in other words joy that was shared with others the level of arousal during the dalcrozeinspired workshops was high generating a lot of energy and urging participants to move joy motivates us to reach out to others as the participants repeatedly mentioned we should help each other joy sparks an interest in fellow human beings and makes us socially responsive the joyful experience from the communal movement activities was the catalyst for their meaningful experiences meaning is associated with being a giver helper andcontributor li et al explain that meaning leads to selftranscendent outcomes 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 effort and worrying because of a concern for others or an issue for example a struggle against injustice ngwathe stakeholders could share and express their struggle through the dalcrozeinspired workshop voice injustices and their needs and explore possible collaborative solutions furthermore a sense of belonging and taking care of others 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 moving together with others and creating water narratives helped participants understand their water crises complexities the dalcrozeinspired 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 publishers 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

this qualitative hermeneutic phenomenological study aims to describe the meaning that members of the parys community ascribed to their experiences of a dalcrozeinspired workshop stakeholders were a number of local residents of parys a scenic town situated on the banks of the vaal river in south africas free state province local residents were asked to share their waterrelated experiences at a workshop organized by a northwest 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 towns water supply system dalcrozeinspired activities were used to facilitate this meeting data were collected through focus group interviews openended individual interviews photos videos and observations all these data were consolidated in one heuristic unit in atlasti a computerassisted qualitative data analysis software program the codes were organized into categories and themes frieses 2014 notice collect and think nct method for computerassisted qualitative data analysis was used from the data analysis five themes emerged related to the dalcrozeinspired 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 wellbeing we therefore argue that the dalcroze approach can be used in communities in crisis to facilitate conflict resolution and transform relationships

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 there are particular concerns about high rates of sicklecell 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 states 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 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 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 papers 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 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 explore genetics in the middle east raz explores what happens when this newly discovered scientific notion of fate encounters its traditional and religious conception amongst the negev bedouin community in israel beaudevins research on inherited blood disorders in oman reveals the way increased biomedical knowledge and the outcomes of its applications can affect a society panterbricks 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 states 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 during which accounts were collected about notions of health risk and particularly genetic risk 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 ie who provides the genetic material to a child as well as questions to explore how traits were passed down through generations qualitative flexible and openended 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 ethnographic research on pregnancy and miscarriage the latter involved interviews with 60 women and 55 secondary participants 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 regular reading and rereading 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 reanalysed to develop and refine the findings several overarching 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 highrise 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 qatars rapid social and economic development representing the countys ability to change itself and its surrounding environment at a rapid rate fuelled by its highincome 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 qatars 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 18 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 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 qatars 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 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 british university an initiative of the qatar foundation 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 professionals the aim of qatars 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 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 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 us notes kane 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 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 knowledgedriven economies rather citizens are being presented with opportunities to equip themselves with specific skills in order to participate in the development of a domestic knowledgebased economy 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 socalled qatarisation of the nation a focus of the qatar national vision 2030 this development plan was launched in 2008 by his highness sheikh hamad bin khalifa al thani to provide a clear roadmap of qatars future and to transform qatar into an advanced society capable of achieving sustainable development 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 qatars food comes from overseas this dependence has become a preoccupation of qatars political elite thus the model is bringing from the outside to create qatari citizens and improve qatar but such imports are contained and controlled as douglas 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 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 dohas reconstructed and reimagined suq waqif 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 28 of its gdp on research with the majority of these funds being managed by the qf which establishes the countrys 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 in 2006 as part of its ongoing commitment to establish a knowledgebased 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 whose mission is to build and maintain a competitive and diversified economy improve the health and social wellbeing of qatars population and support qatars distinctive culture and the security of its people 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 countrys 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 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 higherups in society community leader and sheikhs are engaged by public health drives to communicate such messages around risk 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 qnrffunded weill cornell medicineqatar 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 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 rodriguezflores et al 2014 outlined three categories of the qatari local population q1 bedouins q2 persian or south asian mixture and q3 africanderived 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 qatars 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 alkuwari the sidra medical and research centre is to be an ultramodern alldigital academic medical center which will set new standards in patient care for women and children in qatar the gulf region and internationally and help qatar grow as a hub for genetic medicine it will house a firstofitskind facility the highthroughput 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 facilitys 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 highend 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 individuals own genetic makeup wcmq is conducting research involving the sequencing of 1000 qataris representing 03 percent of the whole qatari population 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 nonqatari the genomic revolution has furnished potent resources for the expression of nationhood the research projects outlined above resonate with the nations overall research strategy which is tied in to the qatar national vision 2030 which is based on the guiding principles of qatars 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 one must remember that qataris make up 12 of the countrys 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 found that 7 of the foreign workers reported that they did not have a qid however what is particularly relevant for the discussion here is that a much larger percentage of the workers lacked a governmentmandated health card this document is required for accessing health care in the states 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 genomesequencing projects and is independently pursuing the whole genome sequencing of 300000 qatari nationals representing almost the entire qatari population the nation appears in discussions around genomic patrimony and sovereignity genomic researchers and proponents of genome projects in mexico and india strategically calibrate contrasting modes of groupmaking the qatari project resonates with rabinows 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 can be sold an individuals 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 the rhetoric of biological inheritance and relatedness is not new and has long provided a vocab of nationality nobility and purity 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 100000 arabs from around the kingdom 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 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 almulla 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 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 wcmq 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 subsaharan african extraction its presence is associated with disorders such as heart disease type2 diabetes and stroke the research included 1266 new york africanamericans 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 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 singlegene disorders research into the relationship between consanguinity and the severity of multigenic 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 socioeconomical factors endogamy and or consanguinity could be disentangled indeed genetics studies related to diabetes and obesity are currently being conducted at wcmq 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 reestablish 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 states 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 nonexistent 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 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 lay observations about the rise of such new diseases resonate with theoretical observations of risk as an aspect of modernity and with lay observations by for example british pakistanis that risk is greater in modern societies 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 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 ita past reconstructed and reconstituted into nationalized historical moments the government has perpetuated neotraditional 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 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 as shiloh et al 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 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 countrys continuing emphasis on modernization as bittles 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 shaw states public perceptions of risk are not neutral a climate of disapproval grounds the belief that certain deeds are dangerous moreover in the current political climate of muslimnonmuslim 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 however unlike in many parts of the world the practice is on the increase as it also is in the united arab emirates yemen iran the increasing rates of consanguinity contradict the assumption that modernization will inevitably reduce the incidence of consanguinity a recent study found that 54 of qatari marriages are consanguineous with first cousin unions being the most common 348 of all marriages and 644 of all consanguineous unions consanguineous marriage is common not only in the middle east but also in south asia north africa and parts of southern europe shaw found a similar increasing trend amongst british pakistanis over the past decade contrary to expectations rozarios 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 allahs hands makes it possible for people to go ahead with cousin marriages despite being perhaps at some level aware of the risks research from a variety of cultural contexts has revealed that lay and public healthmedia discourses about genetic risk and cousin marriage do not always correspond genetic risk was seen as irrelevant and thus a differently constituted perception of risk was present scholars have shown that encounters with genetics alter social life and understandings in fundamental ways in the middle east parkhurst 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 in discussions with my interlocutors genetics remained entrenched in the language of disease illness and disability resonating with parkhursts 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 individual qataris are still grouped according to lineage ones qabila ones extended tribe or family remains the fundamental determinant of an individual qataris social position and future wealth has reinforced certain aspects of history and lineage families now have the opportunity to live in large family compounds with their own mosque emphasizing family allegiances fromherz discussion of the spatial arrangements of buildings is taken further in gardners account of doha itself an anthropologist who has conducted research in qatar gardner makes use of dreschs discussion of the integral feature of gulf societies as the accommodation of foreign matter and applies it to dohas urban spatial discourse the urban spatial discourse involves spatialization and enclaving of globalization and neoliberal flows the compartmentalization of foreign matter people practices and ideasis 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 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 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 and cosmopolitan 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 rajakumar 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 religions emphasis on education the role of the individual in society and the betterment of the world positioning herself as a modern traditionalist the sheikahs 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 this emphasis certainly resonated with what many of us working in on qatar were experiencing a realignment in such a way to deemphasise the role of foreign experts with purposeful alignment between qatar arab identity and an emphasis on arab intellectuals this seems to be part of a general rebalancing 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 scholars working in qatar have shown that tribal tradition is often increased not decreased with wealth 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 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 abbasishavazi et al explain the increased rates of consanguinity in iran as cultural maintenance… in the persistence of traditional behaviour despite the forces of modernization 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 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 husbands family property retention and effective transmission of the culture from generation to generation 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… qatars 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 countrys rapid economic growth and social transition 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 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 panterbrick 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 wadha a 33yearold mother of nine explained that people often suggest that her sons disability was due to inheritance but she refers to it as fate one of my sisters is married to my fathers sisters 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 childs 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 dont 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 daughters 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 maryams condition in interviews respondents often saw the benefits of close marriage as outweighing potential risks although familiar with the discourse of genetics participants were ambivalent about genetic risk and pointed to other possible causes panterbricks research found that despite an awareness of genetic risk participants often accounted for illness and disability through explanation such as evil eye gods will and illness or upset during pregnancy in particular in qatar a womans physical and emotional state during pregnancy took importance over other forms of explanation a womans emotional state would also affect the babys temperament in the uae parkhurst 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 shaw and hurst 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 fathers genetic contribution to a child through the substance of blood stronger than that of the mothers because semen is concentrated in blood a mothers 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 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 womans 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 mans 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 found that their interlocutors reported that problems in a pregnancy or a child were blamed on the mothers actions during pregnancy particularly in relation to attracting jinn as the result of some bad or careless behaviour ultimately god determines a persons 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 gods will as among muslims in saudi arabia 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 states 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 nations 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 nations 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 repositioning and reinventing 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 this paper contributes to the scant literature on the impacts of genetic discourse on genetic risk in consanguineous marriage in diverse global settings 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

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 despite advances in medicine social and economic factors contribute to 50 of a populations health status 1 and some estimate that less than 1015 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 socioeconomic 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 patientcentered care is a vital component of health care that improves the physical and psychosocial wellbeing of patients 6 shared decisionmaking a component of patientcentered care 6 involves assessing the patients 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 decisionmaking is associated with improved patient satisfaction and engagement in care 8 shared decisionmaking is facilitated by empathic communication 9 it encompasses the cognitive capacity to understand a patients needs an affective sensitivity to the patients feelings and a behavioral ability to convey this to the patient 10 a 2002 metaanalysis 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 nonindigenous 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 twofold greater risk of allcause cardiovascularand diabetesrelated death compared to highincome counterparts 15 a recent populationbased study in the uk by riley et al 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 patientcentered care which may then worsen care gaps national survey data demonstrate that racialized lowincome patients in the usa perceive that they receive less patientcentered care including less shared decisionmaking trust and empathic communication and as a result are less satisfied with their care 17 similarly people living in areas of high deprivation 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 followup than white and high socioeconomic status patients 19 additional studies using audiotapes and videotapes of patientclinician encounters as well as patient selfreport demonstrate that clinicians exhibit less empathic and participatory communication towards racialized and low income patients 20 these implicit biases impact physicians communication and clinical decisionmaking 1920 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 decisionmaking in a diabetesspecific population thus we sought to quantify the relationship between empathic communication shared decisionmaking 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 decisionmaking 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 decisionmaking 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 10 an observerrated measure of empathy which has not been studied in this context before shared decisionmaking will be quantified by with the decision support analysis tool10 22 an observerrated measure of a clinicians ability to engage a patient in shared decisionmaking methods overview and study design this is a crosssectional study and secondary analysis of clinical encounter transcripts from a large randomized controlled trial that evaluated the impact of interprofessional shared decisionmaking 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 guidelines for a crosssectional study with details on the original study and recruitment published elsewhere 24 settings and participants the previous study was a 10site 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 515 of the city belonged to a visible minority 26 within each consenting clinicians 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 webbased goalsetting and shared decisionmaking 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 or were not available for a followup in order to assess intervention fidelity during the trial 48 clinical encounters were audiorecorded 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 decisionmaking measured using dsat10 data sources we used patientreported sociodemographic information and transcripts of clinical encounters patients selfreported 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 decisionmaking intervention of note the prior study also consisted of patient questionnaires for patientreported 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 observerrated measure of clinician empathy that measures empathy by examining clinician empathic responses to patientcreated opportunities with responses subsequently categorized on a scale from 0 to 6 because it is observerrated it eliminates biases associated with selfreport assessment of decision quality we conducted qualitative coding of the clinical encounter transcripts to derive a score for decision quality using dsat10 the dsat10 evaluates the clinicians ability to address the status of the decision the patients knowledge of the options benefits and harms the patients values and preferences associated with the decision assessment of the involvement of others and the patients preferred role in the decisionmaking and the next steps 22 the dsat10 scale ranges from 0 to 10 with higher scores indicating more decisional support during the patientclinician interaction because it is observerrated it eliminates biases associated with selfreport data analysis audiorecordings 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 interrater 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 dsat10 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 dsat10 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 dsat10 statistical methods we used descriptive statistics to describe the characteristics of participants and clinical encounters for the primary outcome we used oneway anova to examine the effect of the categorical independent variables entered as betweensubjects factors on our continuous dependent variable eccs if there was a significant effect of any factor we conducted exploratory post hoc tukeys to determine which groups differed from each other 27 for ethnicity we used 2 independent sample ttest for the secondary outcome we used the kruskalwallis test to examine the effect of the categorical independent variables 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 mannwhitney test we conducted a benjaminihochberg procedure to correct for multiple comparisons a moderate false discovery rate of 015 given the exploratory nature of this study 29 all analyses were done using spss statistics for windows version 200 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 and 22 female patients the majority of patients were within the age ranges of 6574 years old and retired with annual income 60000 the sample was primarily white 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 had more than 16 years of practice clinical encounters ranged in length from 3 min 55 s to 1 h 30 min with a mean length of 31 min 26 s mean eccs score across all clinical encounters was 35 08 the most frequent empathic responses were acknowledgement with pursuit and confirmation mean dsat score across all clinical encounters was 39 the most frequently assessed dsat components were the stage of decisionmaking and intervening to provide the knowledge of options the least frequently assessed dsat components were assessing and intervening regarding the preferred role of the patient relationship between patient sociodemographic factors and empathic communication we found that eccs was varied by education and ethnicity but not income post hoc analyses of the former revealed that patients with only a college degree received more empathic communication than patients with bachelors degrees or more and south asian patients received less empathic communication than asian patients relationship between patient sociodemographic factors and shared decisionmaking we found that dsat varied with ethnicity but not education or income post hoc analyses of the former revealed that white patients experienced more shared decisionmaking than those in the other category to correct for multiple comparisons we conducted a benjaminihochberg procedure using a conservative false discovery rate of 015 the comparison between dsat and patient ethnicity had the highest p that was less than its critical benjaminihochberg value thus confirming that all preceding comparisons 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 decisionmaking than nonwhite patientsother interpretation of findingsrelevance to literature these findings are consistent with the existing literature that racialized individuals and those with lower ses perceive less empathy and shared decisionmaking 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 decisionmaking 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 prowhite 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 patientprovider interactions treatment decisions and patient health outcomes 34 similarly patients of lower socioeconomic status perceive less access to care altered physicianpatient interaction and differences in management plan 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 patientcentered communication at the pointofcare education among peers and mentorship by clinicians who score highly on patientrated scales of patientcentered communication 36 strategies to address systemic bias in medical education include standardized antiracism and antibias 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 hypothesisgenerating exploratory study wherein we a priori selected specific outcomes and statistically controlled for multiple comparisons second because our findings were based on audiorecordings of clinical encounters alone we were unable to assess nonverbal empathic communication a key component of empathic communication 18 third heterogeneity of appointment type may have resulted in differing levels of empathic communication and shared decisionmaking given that shared decisionmaking 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 shareddecisionmaking including burnout workload gender and training 32 which may have influenced our results study strengths include our use of objective thirdparty observerrated scales not previously used in this context that reduce bias associated with patient or clinician selfreport 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 decisionmaking 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 with patient selfreport of empathy as well as the patient lived experience using qualitative methodology would enhance our understanding future studies could also test the impact of patientdirected interventions as well as cliniciandirected interventions in specific vulnerable populations author contribution publishers note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations

to assess the relationship between empathic communication shared decisionmaking 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 decisionmaking 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 dsat10 the most frequent empathic responses among encounters were acknowledgement with pursuit 289 and confirmation 300 the most frequently assessed dsat components were stage 86 and knowledge of options 820 eccs varied by education p0030 and ethnicity p003 but not income patients with only a college degree received more empathic communication than patients with bachelors degrees or more and south asian patients received less empathic communication than asian patients dsat varied with ethnicity p007 but not education or income white patients experienced more shared decisionmaking 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 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 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 for example my novel gardeners tale depicts three layers of racism institutionalized personally mediated and internalized 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 societys 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 and value assignments the impact of racism on social media is quite substantial and has a variety of complex implications in todays 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 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 divisionon 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 this provides a voice to underrepresented groups and raises awareness about racial concernstherefore 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 films 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 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 worldeach 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 countriesactually 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 colorespecially 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 isers literary theory approach isers 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 peoples 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 isers 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 isers theory can help us understand how audiences interact with elements of racism hidden in the film both consciously and unconsciously through an indepth 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 isers 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 childrens mindsets and the longterm impact in creating an inclusive culture or reinforcing harmful stereotypes then by considering isers 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 isers theoretical approach through indepth 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 isers 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 films narrative primarily centers on ariels 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 africanamerican actress and singer would be portraying ariel in an upcoming liveaction 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 communitys views toward black people within the context of the little mermaid shedding light on the films 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 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 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 decisionmaking process and contributing to the perpetuation of discriminatory behavior 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 largerscale 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 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 dayone 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 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 microaggressionsthrough 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 certain regions might become racist as a result of structural disadvantages or discriminatory behaviors and racialized spaces and placebased 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 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 ariels 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 wellknown musical moments like under the sea and part of your world music this movie has a number of wellknown and memorable tunes alan menkens music and howard ashmans words combine to provide the audience a fully immersive experience tema this film explores themes of selfidentity and searching selfeducation and cinning with tulus king triton the head of the duchy and ariels sahabat flounder were also ariels neighbors and benefactors moral lessonthe 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 response without analyzing the reading processthe 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 its mostly disney princess has white skin according to brownmiller 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 actors acting the following are some comments regarding the little mermaid film 1 2 this work is licensed under creative commons attributionsharealike 40 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 hasnt 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 someones 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 liveaction 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 liveaction remake some people have refused to accept a black actress in the role of ariel which illustrates how a whitecentric 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 antiblackness 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 isers 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 africanamerican actress as ariel in an upcoming liveaction adaptation of the film has sparked discussions about diversity and inclusion in the entertainment industry critics argue that the rejection of the world communitys 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

the controversy surrounding the casting of halle bailey a black actress as ariel in the liveaction 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 liveaction remake some people have refused to accept a black actress like ariel which illustrates how a whitecentric 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 antiblackness 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 physical activity levels and impacts across europe less than onethird of people aged 218 years old achieve the recommended 60 min of moderatetovigorous physical activity per day 1 such high levels of physical inactivity are fuelling a worldwide public health problem and negatively impacting childrens physical fitness cardiometabolic health bone health cognitive outcomes mental health and adiposity 2 3 physical activity levels reduced further during the covid19 pandemic 4 with recent evidence suggesting the reductions have remained postlockdown 5 children from socially disadvantaged areas and ethnic minoritieswho were already the least activewere most negatively impacted by the covid19 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 wholesystems 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 systemsbased approach involving crossgovernment multisectoral partnerships and community engagement 12 to enact effective systemsbased 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 202313e069334 doi101136bmjopen2022069334 open access tailored to intended recipients context and experience 13 14 15 recently sport england has invested £100 million across 12 local delivery pilots 12 the purpose of each pilot is to design and implement a wholesystems physical activity approach providing a unique opportunity for evaluation evaluations of wholesystems physical activity interventions there is a growing body of evidence surrounding wholesystems evaluations 14 16 17 that suggests mechanisms underpinning complex and wholesystems 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 through a systems thinking lens systems mapping network mapping ripple effect mapping and dynamic systems modelling 14 17 2123 such methods are applied in evaluations of wholesystems approaches 14 17 19 24 however to our knowledge there are no existing guidelines protocols or evaluation studies reporting on evaluating wholesystems approaches focused on children and families given the increasing adoption of wholesystems approaches to physical activity andor other health behaviours there is a need to build further evidence around appropriate effective and innovative methods for evaluating systemsbased interventions 21 22 including those involving children and families using citizen science to evaluate wholesystems 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 wholesystems 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 wholesystems 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 crossdisciplinary 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 peoples physical activity experiences 36 however the potential to understand wholesystems 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 3840 furthermore it is recommended that citizen science projects evaluate participant experience to understand the value of young peoples 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 wholesystems 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 wholesystems approach to physical activity 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 jump delivery areas 2 to assess the feasibility fidelity and acceptability of jump among children and parentscarers 3 to examine the mechanisms of change that underpin the physical activity behaviour of children and families when how and why this happens within jump 4 to contribute to dynamic systems change through informing programme refinement based on ongoing findings from objectives 13 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 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 with higher levels in the most deprived areas 43 specifically within the jump 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 jump evaluation the jump evaluation employs a mixedmethods approach which sits within the complementary philosophies of realist and systems thinking methodology 48 the concurrent mixedmethods approach contains two main elements an effectiveness and a process evaluation the effectiveness evaluation includes a controlled trial focused on primaryage children examining effectiveness at the neighbourhood level and a prepostevaluation of children within the born in bradford cohort study at age 711 years 49 and again at age 1315 years examining effectiveness at the population level the primary outcome is childrens moderatevigorous intensity physical activity 50 the process evaluation includes an examination of the mechanisms and contextual factors influencing the implementation and impact of jump and includes a focus on policy and strategy overarching work streams the jump neighbourhood approach and children and families a mixedmethods data collection approach includes semistructured interviews observations documentary analysis surveys and participatory evaluation methods 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 an interview and focus group study with primaryage children and their families and a yearlong collaborative study with secondaryage 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 jump 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 als 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 andor disseminate findings 57 guidance exists on conducting highquality citizen science research 37 including young people in research 58 and coproduction in a bradford context 59 the following seven principles adapted from the above documents will guide the current citizen science approach 1 childfriendly involvement including clear communication and feedback a longitudinal research design will provide an understanding of families direct experience with jump 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 childrens 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 and collaborative citizen science 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 participants choose the study method which may involve independent data collection in different neighbourhood locations andor independent use of technology these methods may not be suitable for primaryage 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 jump 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 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 two further points once the data collection method has been decided on and once the data analysis approach has been finalised 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 primaryage children and their families study one uses two data collection methods focus groups and parentchild dyad interviews focus groups allow for a diverse range of responses and provide children with less intimidating environments than interviews 64 the parentchild interviewswhich pair a child with their primary caregiverallow for more detailed and longitudinal exploration of peoples experiences and engagement with jump and physical activity behaviour change mechanisms parentchild dyad interviews will aid understanding of how parents shape childrens behaviour as well as allowing parents to expand on the childs 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 study one sampling recruitment and incentives focus group and interview participants will be recruited from the three neighbourhoods included in the jump control trial 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 jump control trial when in primary years 13 the sample for the focus groups will be recruited when the children are in years 24 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 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 childs school to notify them and provide an opportunity to withdraw consent verbal consent and assent will be recorded at the start of each focus group parentdyad interviews the eligibility criteria are as follows those who live in the jump control trial neighbourhoods and 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 jump acceleratorphase programme launch 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 jump participants basic demographics 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 childrens focus groups will incorporate the write draw show tell 70 technique to explore childrens understanding of physical activity this participatory visual method allows children to express their views thoughts and emotions nonverbally andor verbally facilitating inclusivity and engagement 70 images depicting various ► what has made it easyhard to engage with jump ► what would make it easier to engage with jump 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 jump ► receipt of knowledge of physical activity and its benefits and knowledge and understanding of the jump intervention ► responsivenessthe extent to which participants feel the various components of jump are useful ► engagementthe components they report seeing hearing about andor engaging withor taking part in acceptability 92 anticipated or experienced cognitive and emotional responses to the intervention ► affective attitude ► burden ► ethicality ► selfefficacy ► opportunity costs mechanisms of change 93 how does the intervention produce change within the delivery context open access components of jump will also facilitate discussions parentchild dyad interviews nine parentchild dyads 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 jump 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 childs understanding of physical activity their physical activity behaviours why they may or may not have engaged with the jump programme and what impact this has had 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 data will be coded into a framework previously developed to analyse wider jump 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 parentchild dyads participating in the study study two collaborative citizen science with secondary schoolaged children and families study two is a collaborative approachwith data collection developed in partnership with the citizen scientists the longitudinal study will take place over a year and focus on the citizen scientists and their families experiences of physical activity and the jump intervention study two sampling recruitment and incentives we aim to recruit six female citizen scientists aged 1214 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 singlesex 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 jump three families will be selected from one pioneer neighbourhood and three from an accelerator neighbourhood enabling exploration of families experiences at different stages of the jump 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 jump community engagement managers and other partners who work directly with the communities to facilitate trust 30 72 informed consent from the parents and assentconsent 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 given throughout the study include family vouchers child vouchers money donated to the childs charity of choice and teambuilding 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 jump 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 the first two workshops will be facilitated by a researcher and subsequent workshops may be coled with citizen scientists as the project develops the first workshop will be held in a location midway 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 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 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 studys 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 firsthand 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 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 inbetween workshops from workshop three onwards taking a crosssectional approach alongside the collaboratively chosen crosssectional 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 andor 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 in an ageappropriate 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 body sort exercise will occur at the end of three of the six childrens focus groups and parentchild dyad participants will be asked to attend a focus group to discuss their interview experience at each time point within study two 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 and workshops observations will not occur within the parentchild dyad interviews 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 familys 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 8284 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 and their families will be required to give informed consent before any childs participation in the research if any safeguarding concerns are raised as part of the research project the universitys 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 associations 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 jump will provide reasonable equipment 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 peerreviewed 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 jump wholesystems physical activity project in bradford sb and ads led the development of the overarching jump research design in partnership with jh db and as the conception and design of the studies presented in this paper were led by as and mf jh and ads 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 ads subsequent drafts were commented on by all authors and revisions were made by mf all authors have approved the submission funding

introduction wholesystems approaches are being adopted to tackle physical inactivity the mechanisms contributing to changes resulting from wholesystems 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 jump programme a wholesystems approach to increasing physical activity in children and young people aged 514 years in bradford ukthe evaluation aims to understand the lived experiences of children and families relationship with physical activity and participation in the jump programme the study takes a collaborative and contributory citizen science approach including focus groups parentchild dyad interviews and participatory research feedback and data will guide changes within this study and the jump programme we also aim to examine participant experience of citizen science and the suitability of a citizen science approach to evaluate a wholesystems 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 e982parentchild dyad interviews and study two e992 results will be published in peerreviewed 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 persons living with cancer in underresourced and vulnerable populations are disproportionately affected by their disease and have less accesstocare compared to persons from highincome 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 afrocaribbean population of about 180000 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 postsurgical support 5 faces of cancer saint lucia is currently developing activities beyond cancer advocacy towards involvement in patient navigation having an indepth 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 underresourced 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 faithbased organizations as a means of psychosocial support patient navigation programs are also highly valued by these survivors and have been used to improve equity with counterparts from highresource settings 67 the underresourced populations from the asianpacific 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 1213 considering the sociocultural differences varying levels of accesstocare and health seeking behaviors between regions 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 communitybased study referred to as the dcap study 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 with an invasive cancer diagnosis and having accessed health services in saint lucia due to cancer participation included authorization to access a patients data from medical records in health care institutions and centres sources for subject recruitment were faces of cancer saint lucia 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 1415 we screened data sources for potentially eligible participants and then invited as many patients as possible nextofkin 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 all participants provided written informed consent prior to the studyrequired interview data collection and questionnaire eligible participants were interviewed facetoface by trained field investigators using a standardized questionnaire the content of this questionnaire has been fully described elsewhere 11 participants were asked to have onhand their test reports and personal clinical documents to use as memoryaids 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 this current study was based on three openended questions ascertaining information on their overall care experience 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 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 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 at diagnosis 62 reported an earlystage cancer and 47 reported a history of medical conditions the most frequent conditions reported were hypertension and diabetes the majority 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 twentyeight 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 thematic analysis of patient experiences we analyzed the responses from the three openended 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 openended questions table 2 shows key quotes from survivor responses contributing to the development of themes of the 44 interviews conducted three were with caregiversnextofkins caregiver codes were similar to those from cancer survivors and did not contribute to any distinct themes we identified four themes that were common to the three questions availability of support groups importance of support from family and friends access to finances and 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 availability of support groups importance of support from family and friends access to finances and 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 openended 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 insurance 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 openended 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 insurance 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 doesnt 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 heshe 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 whats 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 1718 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 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 openended questions cost of treatment and obligation to fundraise were mostly cited as sources of financial hardship financial hardship is wellknown to be associated with the cancer experience in both highincome and lowincome countries 2223 qualitative studies on the financial hardship in lmics and small islands are particularly scarce 23 one study using a semistructured 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 patientsprovider relationship is suboptimal and diminishes the quality of knowledge transfer and care 2627 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 92829 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 wellbeing 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 11 whereas the responses of our current analysis were heterogeneous revealing both a strong role of familyfriend 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 lowquality 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 79 furthermore our study also adds new information to cancer care from a patients and caregivers 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 evidencebased patientcentered interventions focusing on reducing the patientburden 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 underresourced and uninsured populations in more developed countries conclusions in light of our study multidisciplinary caseconferencing 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 onisland 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 underresourced 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 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

understanding the views of cancer survivors on their experience is important for informing communitybased 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 fortyfour 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 interpersonal relationships during care interventions aimed at strengthening the interpersonal environment of survivors are warranted

understandings of how women manage health under the highly challenging conditions of reentry after incarceration womens incarceration and womens health jail admissions in the united states total over 11 million per year with daily population censuses for jails numbering about 2 million women make up approximately 15 of those totals their rates increasing 18 between 2010 and 2014 whereas mens rates of jail incarceration decreased by 32 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 justiceinvolved 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 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 intimate partner abuse and adult rape 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 trauma and trauma narratives of justiceinvolved women high rates of lifetime trauma from interpersonal violence afflict women with a history of incarceration 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 women who experience traumatic life events often adopt coping strategies such as drug and alcohol abuse that lead to revictimization and additional health risks 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 cardiacrespiratory and immunologic conditions trauma has special significance in a study that focuses on how women narrate relationships in her landmark text trauma and recovery herman explained that trauma a psychic injury or wounding refers to the profound disruption in a survivors understanding of self in relation to the world a loss of perceived control connection and meaning caruth 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 contextuallynot 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 janoffbulman has argued that trauma entails such a shattering of a persons 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 sequelae that interfere with a survivors ability to make sense of form and manage relationships as women with significant lifetime trauma might suffer retraumatization through unintended triggering of symptoms within the carceral setting traumainformed corrections has been a focus of research in recent decades however the attention to targeted traumainformed 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 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 justiceinvolved 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 justiceinvolved womens 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 while subject to a good deal of variation and modification due to intersectionality feminist standpoint theory argues that an emphasis on relationships represents a primary way in which women know and experience the world connectedness and transaction rather than autonomy and detachment thus become key motifs around which feminist epistemology and feminist approaches to philosophic and scientific inquiry take form 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 narrative inquiry for health research storybased or narrative research assumes that narrative is a basic means by which humans make sense of and communicate experience often narrative refers to the temporal ordering of a series of events or conditions by a speaking subject whereas story refers to a more purposeful performance that might involve greater attention to scenesetting and evaluation of meaning than is found in the mere narration of events 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 i use the terms narrative and story interchangeably in this article narrative inquiry has been developed for social science research by clandinin and connelly gubrium and holstein hall maynardmoody and musheno and riessman 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 the narrative analytical methods used in this study were specifically adapted from riessman who demonstrated how narratives convey meaning through thematic structural and performative dimensions as well as through intertextual connectionsthe 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 where stories and storytelling are employed as a mode of intervention and as a method to build knowledge about the subjective experiences and needs of patient populations 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 accessing support through social connection this study focused on justiceinvolved womens 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 social support might take form as emotional material instrumental and informational resources exchanged across specific relationships in lowresource situations support from close network connections might be necessary for survival or getting by 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 the central tendency in the conceptual framework for this studywhich includes feminist standpoint theory narrative inquiry methodology and social support theoryis 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 that parent study had two aims the first being to assess changes in womens cervical cancer knowledge attitudes and selfefficacy 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 the convenience sample for the parent study included englishspeaking women in three county jails in a midwestern metropolitan area from september 2014 to march 2016 the storybased relationshipfocused 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 womens social networks and experiences of trauma as expressed in the interventional phase of the parent study in determining which participants to invite i evaluated womens discussion during the interactive group sessions inviting participants who reported numerous shifting and overlapping roles and relationships in the most detail invitations for the storybased 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 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 none of the participants was lost to followup during the 12 months of interviewing data collection procedures two indepth 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 and on a secure server at the university of kansas medical center interviews in both the initial and followup series averaged 60 minutes and ranged from 31 to 91 minutes the average time between each womans initial and followup interview was 5 months with a minimum of 3 weeks and a maximum of 12 months in the initial interview with each woman a lifestory trope was employed in which the participant was invited to imagine her life as a book similar to what mcadams 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 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 followup interview with each woman i presented a typed outline or a verbal description of the books 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 followup 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 researchers car coffee shops a public library a churchchoir changing room and various mcdonalds 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 opencoded transcriptions independently 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 over the course of data collection and analysisa yearlong iterative process of reading coding memoing and discussion of my interview data and field notes with colleaguesi 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 twopart 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 and an ending in which after recounting the shifts in action or condition a participant gave some form of resolution and provided a coda 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 with detail from the participants 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 prostitutionillegal 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 audiorecording 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 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 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 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 followup interviews all but two of the women acknowledged continuing drug use during the period of the studyincluding the two incarcerated women who described using while in jail one of the most pressing risks related to health and safety in the womens daytoday 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 lifethreatening injury of an infant in the home indeed the womens 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 and explicated below represented comparatively extreme moments of health and safety risk in the womens lives janoffbulman has argued that research based on extreme events might provide particular insight into basic aspects of human thought and behavior the trauma narratives analyzed herein indicated that justiceinvolved 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 to lesser ascriptions of agency strategizing talk in strategizing talk women emphasized agency and an implied selfefficacy sharing in some form the goals plans and actions that made up a process of mobilizing social support natalienatalies criminal justice history included a 4year stay in prison and more than 10 shortterm jail stays mostly for drugrelated offenses chapters in natalies life story described relationships with her mother the fathers of her children two samesex partners in prison and the man she married during the year of this study key events in natalies 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 natalies 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 natalies life story exemplified the use of strategizing talk in her first chapter natalie described leaving her mothers home at age 15 to live with a teenage boyfriend darren aged 14 in his mothers 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 oppositesex 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 natalies tactical aptitude as she pivoted abruptly from describing the first approach to seize on and develop the circumstances surrounding the second in the second gambit she transformed the something stupid of a minor fight with darrens 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 natalies 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 strategizingwith little help and much hindrance from othersto manage relationships in a way that would secure her own and her childrens safety similar to other trauma stories that featured strategizing talk in natalies 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 wheres my support group what the hell is going on in natalies 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 ecausethat it was her own rage that impelled her brother finally to stepup although not always successful and certainly filled with heartache frustration and sometimes recklessness natalies 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 dont throw me no pityparty sounding a kind of credo against being defined as powerless by others jenniferjennifer a white woman in her late 30s also emphasized strategizing talk in her approach to managing support in a trauma narrative jennifers strategizing talk underscored differently from natalies 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 courtordered substance abuse treatment after leaving jail five months later our second interview was conducted on skype following jennifers 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 jennifers 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 idyllicsounding 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 jennifers 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 jennifers 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 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 audiences 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 helpwhom 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 jennifers strategizing talk highlighted the extent to which a perfectly rational perception of a punitive function might impede viability of support functions in the perception of a help seeker jennifer also cited the slightly different cost of managing loss of face 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 jennifers 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 drugabusing women with childrenmight prove prohibitive to jennifers exasperation nothing about the process of seeking support before or getting formal help after losing her child was straightforward except the threat related to what foucault might have called an imperative to confess jennifer recognized that grab it and youre 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 selfefficacy 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 cicelya black woman in her mid30s cicely was mother to four schoolaged 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 followup 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 nononsense goaldriven 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 aint about to go get it then get out of my face so i can go get it myself based on such selfdefining moments one might expect cicelys trauma narratives to be dominated by strategizing talk what instead emerged in both cicelys life story and her stories of crisis was more aligned with a second cluster of story attributes those defining of fatalizing talk cicelys 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 mothers and grandmothers homes in one part of the country to fathers aunts and paternal grandmothers homes in another to foster homes to a stateadministered childrens home to an uncles 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 peoples motivations were elided altogether or depicted as inscrutable exemplary of fatalizing talk around the management of relationships in cicelys narratives of trauma was the protracted and circumlocutory account she gave of her relationship with ángel a longterm 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 cicelys child james cicely volunteered the story of jamess death here titled til today i still dont understand but she clearly found it difficult to narrate she wove her way to the infants death gradually cicely prefaced with a description of ángels 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 fouryou 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 dont think hes going to make it finally immediately before the events of the morning of jamess death cicely shared that she believed she had previously witnessed ángel trying to smother her older child when that child was 6 months old by these means cicely created a context of inevitability retrospectively constructing the infant jamess death as an event destined or foretold cicelys 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 cicelys delivery by a liberal use of the coordinating and the substitution of pronouns for names and rhetorical cushioning through repetition of the qualifier kinda the account was structured less through a replay of its tellers 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 cicelys 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 where ángel was while she was at the hospital and what the police andor courts eventually determined to be true about jamess death and ángels 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 observerdetached alone full of wondering horror noting without comprehension the gaps left unfilled cicelys 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 didnt know cicelys fatalizing talk was at odds with repeated and explicit references to herself in strategizing terms 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 relationshipsthe nursesocial worker her motherthey were perceived not as opportunities for support even failed ones but instead functioned as part of the storys 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 observers 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 netaneta was a 45yearold 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 thirdstory window in netas 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 wellknown rule that led to her predicament tried to get clean again went to treatment i did the big nono in what followed however neta switched from an agentic approach to explain the abuse to a fatalizing approach to narrate its resolution that is once the action shifted to escape neta minimized causeeffect and motivation she assigned management of events and relationships to her abusers sister the action was both sudden and otherinitiatedfor example she asked me she put me indeed the sister issued the imperative and gave it urgency if you gonna leave its 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 to remedy it is worth remarking that the use of strategizing talk in netas story while possibly reflecting a useful guideline signaled as well a kind of victim blaming in which neta assigned to herself responsibility for the abusers lack of regard for her human rights netas account of trauma not only highlighted the quality of continuousness in the continuum of agency but also undermined the tooeasy 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 womens narratives through presentations of self recurring emphases in theme and 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 cooccurring 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 womens selfpresentation 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 othersor 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 memoriesfunctioning to protect women from painful feelings of reexperiencing regret guilt or abandonmentor 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 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 such tendencies are no doubt found among individuals of any gender group but according to some feministrelationalist perspectives historically womens socialization might have led them to organize identity action and ethics around mutuality over autonomy cooperation over competition and collaboration over conflict the disruption absence or denial of social bonds that occurs in trauma might be especially difficult for women to cope with 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 womens ability to access support through social relationships thus the strategic talk in both natalies and jennifers narratives was full of accusatory and alienated references to parents and siblings making clear the womens perceptions of ruptured connectionof abandonment or isolation in times of extreme need for natalie in particular this seemed to lead to a still more tenacious insistence on selfreliance 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 and others who have been involved in the genderresponsive corrections movement which stresses womens prioritization of relationship and susceptibility to retraumatization as a rationale for criminal justice system reform the present study contributes to this conversation by illuminating what health care and service providers outside of corrections might hear when justiceinvolved 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 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 in natalie neta and cicelys 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 and resultant feelings of guilt resentment and social isolation only jennifer presented a divergent case jennifers socioeconomic status and absence of reported physical andor 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 jennifers trauma narrativedelivered 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 womens own perceptions of and strategies for accessing informal ties for support careful attention to womens 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 traumainformed care 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 bourdieus concept of habitus is useful here as bourdieu explained how the perceptions that shape action occur within contexts that are already structured by socioeconomic determinants what might look like poor personal decisions from the outside might not have the look of decisions at all from the womens perspectives to recognize the operations of a continuum of strategizing and fatalizing talk in womens trauma stories is to acknowledge an underlying dialectic of structure and agency in womens attempts to cope 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 instrumentand 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 justiceinvolved 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 indepth 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 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 tends to be information rich requiring a few detailed cases indeed given detailed enough narrative data analysis might be better performed through interpretation of a few cases than many another limitation of the study would be that the derivation of a strategizingfatalizing 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 womens 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 justiceinvolved women can learn to recognize patterns of selfother 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

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 indepth storyeliciting 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 selfpresentation 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 justiceinvolved women post incarceration by becoming familiar with and responding to patterns of strategizing and fatalizing in their personal narratives

introduction prevention of human immunodeficiency virus infection is currently one of the most important global health concerns globally in 2018 379 million people had hiv of which 17 million were new hiv infections 1 despite recent progress in hiv prevention 23 hiv prevalence has an increasing trend in iran 45 according to the last unaids report 61000 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 prevalence of hiv among female sex workers was estimated to be 45 in 2014 478 a national behavioral survey conducted in 2010 throughout 14 cities in iran reported that hiv prevalence among fsws was 45 48 among those who had reported a history of drug use and 112 among those who had a history of injection drug use 9 female sex workers are a hidden and underreported 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 228700 fsws 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 nonpaying 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 hivrelated 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 1415 and also specifically for sexual behaviors 16 there are several several studies which were conducted among vulnerable population such as injecting drug users 17 men who have sex with men 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 and peers was significantly associated with condom use among fsws 2021 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 networkrelated 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 fsws personal network methods setting this study is a crosssectional egocentric network survey of 170 fsws in tehran city conducted between january and june 2017 an egocentric 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 socalled 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 in the personal network measurements and variables the data were gathered using an investigatorconstructed 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 fsws 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 sociodemographic 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 facetoface 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 sociodemographic variables the sociodemographic 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 fivepoint likert response with categories very close close somewhat close distant and very distant social support was assessed by an investigatorconstructed questionnaire with five items reliability of the items comprising the social support questionnaire was pilottested prior to final implementation in this study cronbachs 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 hcoefficient for the questionnaire was larger than 05 characterizing it as strong scale because sexual network members could be nominated for more than one role or interaction the multiplexity of their position was determined this was defined as 1 if they had more than one role in the respondents network and 0 if they had just one role in her network 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 yes1 and no0 perceived safe sex norm perceived safe sex norms were assessed by the perceived norm scale of the safe sex norm questionnaire 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 fivepoint 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 pilottested the attainable score range is 1785 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 cronbachs alpha and the intraclass correlation for this scale were 089 and 083 respectively mokken scale analysis was used to assess scalability and unidimensionality of the questionnaire 35 the loevinger hcoefficient for the scale was larger than 05 characterizing it as strong scale hiv knowledge knowledge about hiv transmission was evaluated by a 14item tool based on an established questionnaire in the iranian population 36 the questionnaire was pilottested with 28 participants in tehran scalability and unidimensionality of the questionnaire were assessed by mokken scale analysis 35 each item and the whole questionnaire had loevinger h coefficients above 04 which is good cronbachs alpha for this scale was 086 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 result1 having hiv test negative result or dont know2 and having no hiv test3 condom use frequency of condom use by participants and the sexual network member was the dependent variable measured on a fivepoint 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 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 3741 the number of respondents was 170 the total number of sexual network members was 615 we created a group mean 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 withingroup and betweengroup regressions 37 the withingroup regression coefficient is the estimated parameter at the partner level the betweengroup regression coefficient is the sum of the fswlevel and the partnerlevel 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 c1 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 respondentlevel random effect with a standard logistic distribution we calculated the intraclass correlation coefficient 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 in 37 taking the withingroup variance equal to π 2 3329 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 c1 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 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 pvalues less than 5 were regarded as statistically significant results the mean age of the participants was 344 years of the participants 71 had a high school or diploma degree most participants reported living in their personal home the mean score of hiv knowledge was 782 among the participants 11 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 241 and 102 respectively table 1 shows the sociodemographic 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 only for nine sexual partners 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 many of the sexual partners like the fsws had a high school or diploma degree 194 many of the sexual partners were married the mean sexual network size and density were 36 and 05 respectively among the sexual partners 175 had more than one role 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 347 in the multilevel ordered logistic regression analyses the intraclass correlation coefficient was 1551 082 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 fsws partners was positively and significantly associated with condom use a onepoint increase in the average of partners education increases by 183 the conditional log odds of condom use however the mean age of the partners was not significantly associated 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 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 sociodemographic characteristics of the fsws and their sexual partners consistent with newcombs 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 4546 and suggests that not only infection risk but also pregnancy risk is not a big stimulus to use condoms among tehran fsws a national biobehavioral 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 4748 according to the final model of the multilevel analysis 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 withingroup regression coefficient was estimated as 0270 and the betweengroup regression coefficient as 00750270 0195 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 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 and may better understand the necessity of condom use this finding is consistent with previous studies 111252 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 5354 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 partnerlevel 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 longterm 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 socioeconomic 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 5860 powergender 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 atrisk population also in line with previous studies 6162 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 highrisk group compared with those in the norisk 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 networkbased interventions may be useful to modify network relationships so as to create a social environment that can facilitate sexual behavior changes 6465 strengths and limitations our study was conducted on a large sample of fsws and obtained partnerlevel 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 evidencebased hiv prevention interventions however our findings should be considered also in the light of three main limitations first our study was crosssectional therefore we cannot draw causal inferences second our findings might be subject to measurement error because our data was selfreported 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 nonrandom 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 highquality 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 biomedcentralcomsubmissions ready to submit your research ready to submit your research choose bmc and benefit from choose bmc and benefit from 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 not applicable competing interests the authors declare no conflict of interest

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 fsws personal networka crosssectional egocentric 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 usethe 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 networkbased interventions may be useful which modify social relationships to create a social environment that can facilitate changes in sexual behavior

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 antisemitism 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 emdat 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 mid1990s 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 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 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 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 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 nonhuman 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 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 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 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 nonhuman 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 manmade and result from organisational routines 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 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 reorientation 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 nonsocial 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 is what saves men from killing each other whether it is the state or values and the social system fields imitation or technology 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 the predilection to explain stability also explains why many studies of postdisaster communities can make the seemingly counterintuitive claim that after disasters communities do not necessarily fall apart but readjust are inventive or even hold together better 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 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 as intellectual precursors of disaster studies 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 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 recompose the world and how 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 how does society distribute preparedness how should collectives make decisions regarding risks how should the world be rebuilt 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 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 and contaminated letters how to explain preparedness and recovery without recourse to bulldozers dams and bunkers 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 actornetwork theory and its allies is a materialism of divide and control over technological artefacts 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 repair as a counter strategy can focus on the technology that stopped working 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 actornetwork theory because the vocabulary of ant is geared towards disentangling big concepts into microprocesses 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 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 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 oliversmith disasters unmask the nature of societys social structure 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 this insight is paralleled by the idea in technology studies to study accidents and breakdown to understand technology in use 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 and actor network theory 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 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 technoscientific 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 technoscientific processes that produce hurricanes floods or nuclear accidents both as events themselves and as accounts of these events the naturalness of 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 antimodernist 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 coproduced 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 and what capacities these actors have 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 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 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 and more recently through the writings of giorgio agamben 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 states relation to the population a disaster in this version is an event outside the state considered as an organisation but 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 and control the movements of people and things the neofoucauldian 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 agambens 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 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 911 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 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 and bunkers studies of risk and preparedness are very much studies of dealing with the time of disasters like the precautionary principle or prevention 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 postdisaster 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 8 the final approach analyses politics itself as 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 reorient the blame question and deneutralize it through sociological analysis by putting political processes centre stage and very often concentrating on a particular range of political actors 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 9 this view has been popularized by naomi klein in her bestseller the shock doctrine 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 historically it follows a trajectory of arguing for a demilitarization of disasters and for preferring the improvisational skills of the population over the organized bureaucratized and militarized work of state organisations 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 nonhuman 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 nonhuman as a general category but to the earths climate and its longterm 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 petersens 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 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 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 reenforcing 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 als 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 disasteryettocome 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 clarks 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

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

although unplanned settlements grew in density and number after zambias independence from british colonial rule in 1964 such settlements were a preindependence phenomenon 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 new residents simply moved into the settlement areas and claimed parcels of land by constructing lowcost 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 lowcost housing with time the population of these unplanned settlements expanded and by the early 2000s accounted for around seventy per cent of the entire population of lusaka city and comprised 20 of the citys residential land having such a large proportion of the citys inhabitants in unplanned areas has brought about a myriad of socioeconomic 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 furthermore the houses were built without any building authorization by the city municipality as required legally zambias population stands at 196 million people with a population density of 261 persons per square kilometer although the countrys area covers 752614 square kilometers only twenty percent of the land translating to about 200000 land parcels was fully registered and 600000 parcels were at various stages of processing as of 2014 the rest was unregistered 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 several scholars have observed that informality induces land tenure insecurity and has negative consequences on investments and land resources management de soto 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 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 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 furthermore land rights formalization is theorized to facilitate land market transactions which indirectly leads to higher overall investment in land however the empirical evidence from several countries in subsaharan 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 subsaharan 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 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 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 the prevalence of unfavorable customary practices and attitudes that restrict womens 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 womens rights to inherit and own land discriminatory practices such as restrictions on land ownership continue to persist similarly in malawis 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 consequently as men secure their property rights those of women risk being undermined 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 essentially a danger inherent in formalization is consolidating existing inequalities 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 other challenges of largescale 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 some scholars have noted that land rights formalization programs result in heightened insecurity due to displacements especially among the marginalized groups in society ie the poor and widows 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 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 socioeconomic development 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 governments 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 the zambia national land titling program had a target of processing and issuing 300000 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 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 socialeconomic 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 1260 for madido and zmw 625 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 for up to 36 months for a total of zmw 4990 in madido and zmw 374793 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 meinzendick 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 the context includes both formal and informal institutions socioeconomy 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 everyone 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 mens and womens land tenure security is the outcome of interest and feeds back to shape the context for men and womens land rights in the future land tenure security has three components completeness of the bundle of rights duration and 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 longterm 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 mens land tenure security adapted from 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 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 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 bauleni covers an area of about 1533 square kilometers and madido about 0891 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 64000 while madidos was at 210 672 in 2010 bauleni and madido have 3697 and 2109 households respectively bauleni consists of lowincome and middleincome 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 bauleni started in the 1970s as a small unauthorized squatter settlement formed by laborers who worked in nearby commercial farms with time its population grew it was legalized in 1998 implementation of the national land titling program started in bauleni in 2018 madidoalso 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 multiparty 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 colleges land ownership rights before offering them to the illegal settlers and has since regularized their ownership through the issuance of title deeds implementation of the national land titling program started in madido 2017 data collection an explanatory sequential mixed methods approach was employed 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 longterm 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 firsthand 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 3in1 focus group discussions 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 mens fgds were facilitated by a male researcher while the womens 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 womens 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 coproduction 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 nonverbal communication of the women to the mens 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 four 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 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 and analyzed using basic descriptive statistics such as frequencies means standard deviation and two sample independent ttest the ttest 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 decisionmaking 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 564 and 485 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 while in bauleni there was no statistically significant difference in the mean ages of the male and female household heads almost half of the respondents reported the housing property owned by a married male household head while a quarter reported joint ownership by husband and wife joint ownership by husband and wife entails that both the couples names are included on the title the rest reported ownership by female headed households and by wives female household heads are unmarried 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 womens sense of tenure security had greatly increased while a small percentage thought the increase was only moderate 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 owners 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 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 subsaharan africa some interventions in uganda ethiopia and nepal showed figure sense of tenure security after land titling by women and men in bauleni and madido a notable increase in womens tenure security than was previously held such cases notwithstanding viña 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 mens sense of tenure security had greatly increased after land titling 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 posttitling 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 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 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 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 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 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 a minority of the respondents indicated that there was no change in inheritance rights to property for daughters post land rights formalization 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 daughters 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 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 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 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 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 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 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 in rwanda the land registration and titling program implemented alongside the 1999 law of succession and the national land policy of 2004 resulted in increased inheritance rights of daughters similar to sons permanent land rights for divorced or widowed women and increased ability to resist restrictive customary practices eg polygamy where wives property rights were not recognized by the state decisionmaking authority by men and women household heads decisionmaking is an indicator of control being able to exercise agency over what happens to land suggests an acceptance as part 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 decisionmaking authority of land owners while 15 noted a moderate increase 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 close to half of all respondents did not attribute any changes in the decisionmaking authority to acquisition of title deeds despite few respondents citing increased decisionmaking 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 subsaharan africa show positive outcomes in securing property rights and upholding equality across both genders in rwanda equal decisionmaking rights between formally registered spouses to alienate property and rights to earn independent incomes through private property were reported agarwal and panda noted that establishing womens 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 as viña 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 ie men and women especially in lowincome areas citing low value of most properties as well as unwillingness by financial institutions to offer loans 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 land conflicts love and trust among family members intrafamily tensions and contestations are reported over bequest usage or sharing of land 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 of the respondents in bauleni indicated that land rights formalization had not influenced landrelated family conflicts this is compared to below half of madido respondents interestingly only 10 of respondents in bauleni indicated a decrease in land related conflicts among family members while about a third 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 genderbased violence in india the scarcity of land has resulted in tensions between spouses in kenya over prioritization of consumption crops or commercial crops according to rukema and khan 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 landrelated conflicts rukema and khan 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 coowners over half 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 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 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 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 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 patronclient 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 childrens 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 publishers 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

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 infocus 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 onethird 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 decisionmaking 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 propoor initiative to ensure that such initiatives should not incentivize future land encroachments

introduction 1importance of workforce diversity in cancer disparities research the underrepresentation of women and individuals identifying as members of racialethnic minority groups in cancer disparities research and cancer care is well known 12 as are the potentially linked racial and ethnic disparities in cancer risk cancer incidence and cancer mortality for example african americanblack and hispaniclatinx men and women bear an unjust burden of incidence and mortality from several cancers relative to their nonhispanic 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 overweightobesity and more difficulty quitting tobacco than nonhispanic white adults 45 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 behaviorsconditions thatif targeted in most atrisk and general populationsmay 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 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 1314 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 1719 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 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 17192223 there is also a need for better knowledge dissemination and translation between researchers and diverse communities 2425 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 and the university of texas md anderson cancer center funded by the nci under a feasibility studies to build collaborative partnerships in cancer research initiative the purpose of this collaboration is to bring together a minorityserving institution and a comprehensive cancer center to create a comprehensive researcheducational 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 hispanicserving institution and an asian american and native american pacific islanderserving 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 us news world reports best hospitals survey annually since 1990 28 the uhand programs 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 earlystage investigators to better understand and conduct intrainstitutional 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 cancer hospitals in the us news world reports best hospitals survey annually since 1990 28 the uhand programs 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 earlystage investigators to better understand and conduct intrainstitutional 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 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 2425 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 programs funding by the nci at first submission uhands 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 communitybased 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 directexperience 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 racialethnic minority scholars and faculty engaged in cancer disparities research by providing them with research training mentorship and servicelearning 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 2425 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 programs funding by the nci at first submission uhands 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 communitybased 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 directexperience 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 racialethnic minority scholars and faculty engaged in cancer disparities research by providing them with research training mentorship and servicelearning 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 serves the undergraduate scholars doctoral 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 eps 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 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 communitybased servicelearning experiences and summer research experiences all guided through individual development plans 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 mentorsfrom either uh or mdawho 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 2year training period the pilot research program 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 tobaccoand lifestylerelated disparities research the uhand program grant included funding to support two pilot projects one on the stressbased 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 is integrated in the cancer health equity development of scholars and in the execution of pilot research projects to increase the realworld 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 healthbased organizations that provide servicelearning 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 atrisk populations and identify local opportunities for sharing research findings the cop team also works closely with the community advisory board the overall aim of the cop is to enable bidirectional 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 one given to a principal investigator at mda and another to a pi at uh additionally the components of the uhand program each have coleadership 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 and an external advisory board 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 programs 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 programs 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 selfefficacy 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 in the cancer disparities field our results are presented in relation to these objectives this work may provide a comprehensive evidenceand needbased 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 healthrelated sciences individuals with physical or mental disabilities individuals from lowincome 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 undergraduate or doctoral student enrolled in or recently accepted into a fulltime degree program at the uh having at least 2 years remaining in their degree plans prior to graduation at the start point of the uhand programming 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 to be a us citizen or permanent resident 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 andor individuals from racialethnic 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 freestanding 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 recruitmentonly 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 3level 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 interest in cancerhealthsocial disparities and prior research andor 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 uhands website potential mentors were selected by the uhand pis based on their engagement in socialbehavioral cancer disparities work and their agreement to participate scholars were matched to topchoice mentors with consideration for ensuring distribution across potential mentors all approached mentors 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 for undergraduate scholars uhand participation also included participation in the uh summer undergraduate research fellowship program where they learned about various aspects of researchfrom 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 postdoctoral fellow was selected and appointed as a fulltime scholar in the uhand program with a designated faculty mentor she also participated in all uhand programming scholar outcome measures 221 research selfefficacy surveys with questions on research selfefficacy were administered at baseline midprogram and exit postdoctoral fellow and graduate scholar responses were combined to facilitate confidentiality a modified version of forester et als research selfefficacy scale was used 36 the original 33 items were slightly modified and reduced to 14 relevant items regarding successfully accomplishing research related tasks with response options ranging from no confidence to total confidence two additional investigatorgenerated items asked about interest and likelihood in pursuing a career in cancer disparities research with response options ranging from not at all to extremely our explicit goal was to increase research selfefficacy over time among uhand scholars from baseline to exit the research selfefficacy scale demonstrated strong reliabilities in this sample academic products 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 deliverypublication our timeframe to assess adherence to our explicit goal was extended to the end of the 2020 calendar year our explicit goal was to engage uhand scholars in research yielding peerreviewed 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 and the inaugural health research institute conference 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 scholar program retention was measured by the comparison of the number of scholars from the time of enrollment to program completion our explicit goal was to retain 100 of scholars in the 2year program by program completion mentee evaluation of mentors surveys with questions on scholar evaluations of their mentors were administered at midprogram and at exit the postdoctoral fellow and graduate scholar responses were combined to facilitate confidentiality fleming et als mentor competency assessment was used 37 this 26item 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 26 questions asking how skilled the mentee feels the mentor was in the mentioned areas on a scale of not at all to extremely 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 uhand program feedback and strategies learned 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 5point likert scale from very poor to excellent with an option to select na uhand programmatic aspects via 12 items on a 5point likert scale from very poor to excellent and general program satisfaction in 5 different programmatic activities on a 5point likert scale from very poor to excellent with an option to select na face valid investigatorgenerated 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 discriminatoryunfair experiences in academiatraining on a 5point likert scale from not confident at all to completely confident with an option to select na our explicit goals were to obtain scholar ratings of the uhand program and programming from good to excellent and of confidence in using strategies learned in the uhand program from fairly confident to completely confident postprogram progression scholar postprogram progression was assessed through surveys that scholars completed monthly during their participation in the program and biannually 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 100 of graduate scholars pursue a postdoctoral training or faculty position and the postdoctoral fellow obtain a tenuretrack faculty position following program completion analyses descriptive statistics including means and frequencies were calculated for continuous and binary variables to account for the small sample size the wilcoxon signedrank test was used to analyze data between matched subjects for differences in distribution and for outcomes of interest over time alpha was set at 005 all analyses were conducted using sas 94 38 results research selfefficacy table 2 presents the means and standard deviations for each of the 14 research selfefficacy items and for the total research selfefficacy score of all scholars across years and by groups the means of total research selfefficacy scores across all scholars were 934 889 and 106 for 2018 2019 and 2020 respectively the total research selfefficacy score for all scholars significantly increased from 2019 to 2020 and from 2018 to 2020 but not from 2018 to 2019 thus our explicit goal of increasing the research selfefficacy of scholars from baseline to exit was achieved a closer examination by scholar group indicated that the research selfefficacy of undergraduate scholars increased significantly from 2019 to 2020 but not from 2018 to 2019 or from 2018 to 2020 no significant differences were found in graduatespost docs in research selfefficacy scores across years academic products 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 achievedsurpassed 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 and the other graduate scholar has manuscripts in progress with her uhand mentor overall we partially achieved academic product goals during the assessed time span program retention five of six undergraduate scholars completed the 2year program with 1 scholar completing only 1 year due to an opportunity to graduate early all 3 graduate scholars completed the 2year program and the postdoctoral fellow left after a year to take a tenuretrack faculty position overall program retention was 80 as such we did not achieve our goal to retain 100 of scholars in the 2year uhand program by program completion however none of our scholars dropped out of the program while still enrolled inemployed by uh full time thus we retained them in the program as long as they remained eligible for support as uhand scholars mentee evaluation of mentors 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 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 mentormentee dyads were assessed across 10 scholars 1 undergraduate scholar switched mentors after year 1 uhand program feedback and strategies learned 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 except for 2 ratings community servicelearning experience with community partners and community servicelearning experience with uhand staffhealth educators thus we failed to achieve our goal of obtaining scholar ratings from good to excellent for using strategies learned in the uhand program particularly in the case of 2 of 34 uhand program seminarssessions both in the area of community servicelearning 380 i have increased my ability to be an independent researcher as the result of uhand 360 the uhand program was important to my career development postprogram career progression all 6 undergraduate scholars pursued admission into health science graduate or medical school programs 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 tenuretrack 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 ncis partnerships to advance cancer health equity initiative the uhand program incorporated best practices of successful training programs such as integrated education 29 30 31 professional development 29 collaboration between researchers and advocates 2425 collaborative partnerships between institutions 32 broad stakeholder engagement 2529 targeted approaches for atrisk 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 cancerprioritizing diverse women and minority researchers for trainingand facilitating knowledge dissemination and translation between researchers and community this report presents outcomes relative to the 7 goals of the uhand programs 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 selfefficacy from program baseline to exit was achieved the uhand program provided scholars with research experiences didactic coursework career development seminars and interactive communitybasedlearning experiences guided through idps with their mentors scholars were also involved in presenting research to community representatives and audiences as well as professionalacademic 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 researchbuilding skills over a 10week summer term these types of experiences were designed to help build and develop their research selfefficacy skills through mastery via skillbuilding vicarious learning and support overall research selfefficacy significantly increased over the 2year program although this was driven by the undergraduate scholars and followed an overall decrease in selfefficacy from the preprogram to the midprogram assessments the latter may be explained by the dunningkruger 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 selfconfidence 39 one report has shown that less competent junior physicians tended to rate their selfefficacy higher than what it was while competent junior physicians especially women tended to rate their selfefficacy lower than those who were less competent 39 suggestions for prospective programs would be for the program directors to be aware of the dunningkruger effect and particularly that selfefficacy may not translate directly to performance 39 tailoring the assessment to the education level of the scholar would be advisable 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 selfefficacy 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 selfefficacy over time that should be monitored and addressed in realtime as the scholars enter the research arena moreover it is also worth noting that the more educated group did not experience statistically significant increases in selfefficacy over time in contrast to the undergraduate group nevertheless while selfefficacy ratings were higher among this group of scholars relative to the undergraduates to begin with ratings generally rose from pretraining to exit 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 selfefficacy 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 midprogram dip similar to scholar selfefficacy we believe that this pattern may be similarly explainedgreater 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 ≥30 in every year and every scholar group equivalent to very interested and very likely to pursue a career in health disparities nevertheless we failed to completely advance interest and intention to extreme interestlikelihood over time for our scholars this suggests more work is needed to better understand scholars responses and thus develop programming to heighten interestintention perhaps by further enhancing selfefficacy addressing imposter syndrome andor 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 realtime as applicable the second goal was to achieve peerreviewed academic work products amongst the undergraduate graduate and postdoctoral scholars while all scholars achieved the minimum number of presentations just over half of the scholars achieved publication goals with wide variability amongst scholars 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 2year 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 goalattaining complete 2year program retentionwas 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 tenuretrack 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 2year program however training programs need to be flexible for changing circumstances or opportunities over time that may affect a scholars 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 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 andor 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 knowledgeexperienceconnections 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 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 sexethnicityrace 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 ones 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 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 and thus struggled with how to involve our scholars in substantive and meaningful work hence training programs with servicelearning 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 or degreerequired 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 the seventh goal was to track postprogram progression with undergraduate scholars pursuing graduate program admissions graduate scholars pursuing postdoctoral or faculty positions and the postdoctoral scholar obtaining a tenuretrack faculty position we achieved this goal with the postdoctoral and undergraduate scholars the latter of whom went to a combination of masters degree doctoral degree or medical degree programs it is too early to assess the 3 graduate scholars 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 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 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 pis affiliation with that program and the programs focus on healthoriented communityengaged work and social justice which complements the uhand mission however the uhand program serves as a model of a grantsupported 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 racialethnic minority student scholars through the provision of research training mentorship and servicelearning 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 needbased 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

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 d uring the first wave of the coronavirus disease 2019 pandemic in spring 2020 19 countries in the eueea and the uk implemented social distancing or stayathome 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 ie the most vulnerable population group concerning severe covid19 disease to avoid contact with persons outside the household and in crowded places 2 systematic reviews of the literature on nonpharmaceutical interventions against covid19 suggest that social distancing recommendations and stayathome orders were moderately effective at reducing the incidence of covid19 disease 34 the tendency to comply with npis against covid19 seems to increase with age 56 and survey data from sweden suggest that many followed the agespecific recommendation 78 however it remains unclear how effective the policy was in preventing covid19 disease among older adults in sweden in this article we employ a regression discontinuity design 9 to isolate the additional effect of swedens agespecific recommendation on social distancing behaviours and disease outcomes during the first wave of the covid19 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 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 10 an appbased study that collects data for epidemiologic surveillance and prediction of severe acute respiratory syndrome coronavirus 2 infection via daily selfreports of disease symptoms 11 12 13 on their first use of the app participants selfreported their year of birth sex height weight and postal code they also completed a health survey with questions about preexisting 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 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 to be exposed to the agespecific 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 in the last week how many times have you visited somewhere with lots of people in the last week how many times have you been outside with little interaction with people outside your household and in the last week how many times have you visited a healthcare provider as described further below our analysis focuses on individuals close to the 70year 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 periodspecific averages of the social distancing measures for individuals born before 1980 in the study and there were too few participants born each year before 1940 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 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 due to the isolation policys aim to reduce visits to crowded places measure was our primary measure of social distancing going outdoors with limited physical interaction was fine according to the recommendations measure should therefore not be affected it was less clear what to expect for measure it was recommended that a courier collect prescriptions from pharmacies measure did however include inperson healthcare visits for which postponement could be considered an adverse effect disease outcomes we also investigated populationlevel effects on severe cases we obtained national data on all individuals born before 1980 and coded a binary indicator for whether they had at least one inpatient covid19 disease episode or had died due to covid19 disease during the first wave the inpatient data were retrieved from the national patient register 14 and mortality data from the cause of death register 15 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 testing obtained from the sminet database at the public health agency it was mandatory for all clinical laboratories in sweden to report pcr tests positive for sarscov2 to sminet during the covid19 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 eg been used to estimate the effects of early antiretroviral therapy for hiv patients 16 and other agespecific policies 1718 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 19 we are not aware of any other policies that might have affected social distancing or covid19 disease at the 70year 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 70year 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 70year 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 the outcomeage 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 highorder polynomials we therefore used local linear and quadratic regressions to estimate the jump in the outcomes at the threshold in each analysis we used a datadriven bandwidth selection method to identify the mean squared error optimal window around the 70year threshold 23 the larger the bandwidth the more individuals are included which increases the precision of the effect estimates however the risk of model misspecification bias also increases the datadriven procedure aims to identify the largest possible window in which the relationship between the outcome and age is approximately linear the analyses were performed using the rdrobust package for stata 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 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 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 ethics approval the swedish ethical review authority has approved csss and the collection of the register data used in this study results principal findings the study participants went to crowded places 54 times a week outdoors with limited interaction 88 times a week and to healthcare providers 05 times a week on average during followup figure 1 shows how these behaviours varied by age alongside the fitted values from local linear and quadratic regressions estimated within the optimal windows around the 70year 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 during the first wave of the pandemic à047 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 70year threshold on being outside with little interaction or visits to healthcare providers figure 2 shows estimated effects on the incidence of severe covid19 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 covid19 disease at the age threshold compared to a scenario without the agespecific recommendations the local linear estimates indicate a 16 reduction in both severe covid19 cases incidence rate ratio ¼ 084 and the number of confirmed cases irr ¼ 084 at the 70year threshold although the ci for confirmed cases overlaps the null for severe cases the estimate was slightly larger in the quadratic specification irr ¼ 078 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 table 2 and supplementary figures s1s5 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 exploring these subgroups further we found that the effect on visits crowded places appeared to be limited to men and women without other risk factors we found no indication of an effect among women with other risk factors but they also isolated themselves more than the other groups even at younger ages for the disease outcomes stronger absolute effects were suggested among men than among women which is consistent with the social distancing results however no effect on covid19 disease was observed for stockholm county where results were inconclusive discussion the results suggest that swedish 70yearolds isolated themselves more than those just below 70 years implying that at least parts of the population adhered to the nonmandatory agespecific 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 70year 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 agespecific 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 covid19 to a greater extent than men 25 which we did not find evidence of for this particular policy people with other risk factors also appeared to be more willing to selfisolate even at younger ages which couldat least in partbe 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 stayathome orders indicates that they were moderately effective in reducing disease transmission during the covid19 pandemic 3426 which is in line with our results we are not aware of any other empirical studies evaluating the effects of agespecific restrictions or recommendations our study therefore provides new insights into how populations may react to agespecific 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 covid19 801 figure 1 regression discontinuity plots for the impact of swedens agespecific isolation recommendations on social distancing behaviours at the 70year threshold with binned means and fitted values from local linear and quadratic regressions estimated within mean squared error optimal bandwidths around the threshold for three social distancing measures mean weekly visits to crowded places mean weekly outdoor episodes with no or limited interaction and mean weekly visits to healthcare providers note additive estimates reflect biascorrected effects on the difference scale estimated within mean squared error optimal bandwidths with 95 eickerhuberwhite heteroskedasticityrobust confidence intervals from the rdrobust package for stata in parentheses relative estimates reflect ratios computed using the additive estimates note estimates reflect biascorrected incidence rate differences per 1000 population and incidence rate ratios estimated within mean squared error optimal bandwidths with 95 eickerhuberwhite heteroskedasticityrobust confidence intervals from the rdrobust package for stata in parentheses social distancing recommendations for older adults in sweden during covid19 803 irrespective of recommendations this notwithstanding the discontinuities we observe suggest that the agespecific 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 agespecific recommendation prevented between 2100 and 3600 hospitalizations and 7501312 deaths during marchseptember 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 the swedish response to the covid19 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 populationlevel measures that were implemented during the same period 26 the swedish public also has high levels of social trust and trust in its government 2829 which may have played a role in the success of the agespecific recommendations 30 however data from other countries suggest that individual psychological factors may have a larger effect on compliance with npis against covid19 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 agespecific 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 70year threshold during the covid19 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 ageoutcome relationship we followed the current best practice recommendations which is to fit simple models within a datadriven bandwidth around the threshold 2122 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 covid19 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 3738 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 nonmandatory recommendations as suggested by data from norway and the usa 3940 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 agespecific 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 nonmandatory 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

background this article investigates the impact of a nonmandatory and agespecific social distancing recommendation on isolation behaviours and disease outcomes in sweden during the first wave of the coronavirus disease 2019 covid19 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 designin combination with selfreported isolation data from covid symptom study sweden n ¼ 96 053 age range 3979 years and national register data age range 39100þ years on severe covid19 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 covid19 cases à16 at the 70year threshold these results imply that the agespecific recommendations prevented approximately 18002700 severe covid19 cases depending on model specification conclusions it seems that the nonmandatory agespecific recommendations helped control covid19 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 nonmandatory agespecific social distancing policies in the face of a novel virus

introduction the positive association between inequality and homicide is wellestablished and holds at social scales from communities all the way to countries as a matter of definitional clarity we adopt the un 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 despite the pervasiveness of the relationship between inequality and homicide scientific consensus to explain it remains elusive kelly argues that inequality creates stresses and erodes social norms among the poor making homicide more likely using the un human development index ouimet 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 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 as with inequality there is debate over the causal mechanisms that underly this association some researchers argue that it is a function of heat stress which weakens impulse control for instance recent research indicates that heat interferes with serotonin reception to reduce inhibition making homicide more likely 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 coccia 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 and growing climatic warming and associated climate change has created fears that violence will increase anderson et al pioneering study of the 50 largest us metropolitan areas established a strong positive relationship between temperature and homicide through time in another early study rotton and cohn found that temperature was associated with assault rape robbery and burglary through time but not homicide in a statelevel study of the united states and in a study of us 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 provide a path model based on countrylevel 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 peñaherreraaguirre et al conducted a 25year 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 us cities from 2007 to 2017 found that the positive association between temperature and homicide held only for chicago and new york finally a study of new york and london covering the years 18952015 found that including per capita gdp in a statistical model eliminated the temperature effect on homicide and correcting for serial autocorrelation eliminated all relationships 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 inequalitydriven risk sensitivity and temperature are explored on a global countrylevel 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 inequalitydriven risk sensitivities of poor middleclass 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 suggested that unequal distributions of wealth and social status impact individuals utility functions which in turn influence an individuals 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 peercompetitors 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 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 societys wealth 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 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 followed by a concave downward segment followed by a strongly concave upward section 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 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 industrial societies are no different conspicuous consumption 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 us general public found a positive correlation between inequality and a desire for status goods wealth has much greater significance than purchasing power it signals ones position in society and consequently ones 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 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 this pattern of risktaking behavior has been confirmed across an incredibly wide array of cultures including hunting and gathering bands tribes ancient kingdoms and modern states 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 terrorism and mass protest movements pratt provided a measure of risk sensitivity for an individual at different levels of wealth subsequent work by arrow reinforced his research and it is known as the arrowpratt measure of risk aversion the measure is calculated as equation 1 arrowpratt measure of risk aversion methods and data r u ′′ u ′ where u 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 therefore by fitting a curve to a wealth distribution one can measure wealths utility for conveying social status and the arrowpratt 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 exposigmoid function because typical wealth distributions are generally exponential but exhibit sigmoid oscillations that define wealth classes the function is equation 2 exposigmoid utility function s rank e abcsindcos where s is the exposigmoid 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 the world bank provides publicly available data on homicide gini coefficients percent population below the poverty line and wealth distributions for all countries from 1960 to 2019 enabling measurement of wealth distributions and arrowpratt 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 300000 which excludes small tropical island states who are often outliers in a variety of social measures exposigmoid curves were fit to their wealth distributions and arrowpratt measures were calculated for each centile the arrowpratt measure was averaged over these centiles providing an overall measure of a countrys 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 arrowpratt measure was calculated for each of these population segments the world bank provides homicide rates from the un office on drugs and crime international statistics which is recognized as a source of reliable homicide data 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 countryyears 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 and varying levels of social control policing and cultural norms surrounding violence the logged homicide data show breakpoints between low homicide countries high homicide countries and medium homicide countries inbetween these countryspecific effects should be taken into account panel regression is a common method that takes into account withingroup variance on key variables within a linear model therefore panel regressions were conducted using panels of low medium and high homicide countries because the inequality metrics were highly correlated separate models were run for each of the inequality metrics 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 the relative importance of inequality and temperature and 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 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 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 worldwide 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 and temperature is not statistically related the wealthy present a counterintuitive 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 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 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 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 middleclass 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 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 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 studys 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 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 countrylevel 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 nonviolent means of competing but they also compete in lethal ways that are not classified as interpersonal homicide as in coups and leading rebellions 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 dvnowyi1b 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 publishers 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

researchers debate the causal connections between homicide inequality and temperature this study examines these relationships globally based on countrylevel 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 decisionmaking 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

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 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 6111216 therefore we undertook this study to dissect a finegrained 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 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 41819 in our attempt to understand this genetic complexity we have assessed the ancestry and geneflow pattern of the major tribal populations of south asia 72021 in present study we evaluated the genetic affinities of the kol population which as the third largest tribal population of south asia comprises 17 million people in conducting our genetic study we first ascertained the classical ethnographic work which has suggested kol as an austroasiatic 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 clustering with the munda speakers however in the principal component analysis both of the studied kol groups aligned along the south asian cline with clusters formed by a large number of indoeuropean and a few dravidian speakers although the kols are geographically immediate neighbours of mundari and transitional populations they remarkably exhibit no attraction towards austroasiatic or transitional populations at the intrapopulation level both of the kol groups were distinct from each other suggesting their longterm separation or a possibility of assimilation of different neighbouring tribal groups into a single ethnolinguistic unit called kol more specifically we see three subclusters in the vicinity of both of the kol groups kol1 and kol2 fall in the subclusters1 and 2 respectively kol1 falls in the subcluster1 with meghwal kurmi dharkars kanjars and lambadi populations whilst kol2 was found to be inbetween subclusters 2 and 3 harbouring dravidian and indoeuropean populations 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 indoeuropean 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 the loglikelihood estimate was in favour of best k value as k 12 apart from two major components prevalent in south asia we also see other minor and populationspecific ancestry components the majority of these minor components were either sporadic or present among some specific language groups 5825 eg the southeasteast asian components among mundari and tibetoburman speakers 525 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 amongst both of the kol groups all these three components were substantially visible except for a single sample none of the kol individuals showed any eastsoutheast asian specific component significantly which is otherwise abundant among their geographic and linguistic neighbours this finding ruled out their recent common ancestry with the austroasiatic speakers hence together with the pca admixture analysis also suggested a nonaustroasiatic connection of these kol groups we further investigated one outlier sample of kol which showed high level of eastsoutheast asian ancestry in the pc analysis this kol individual aligned along the transhimalayan cline 5 in terms of populationwise affinity this individual clustered with the tharu population of uttarakhand in the admixture plot 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 we omitted this sample from the pool for shared drift analysis of kol groups we performed the outgroup f3 test the result was consistent with the pca in terms of their closer affinity with extant south asian populations 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 in the allele frequency based analysis the kols exhibited a closer genetic affinity with the indoeuropean scheduled castes and tribal populations rather than with austroasiatic or dravidian populations to gain a deeper insight into the extent of genome sharing between the kols and other south asian populations we applied haplotypebased 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 as expected kols received majority of the chunks from south asian populations when compared with other eurasians amongst the south asians the indoeuropean scheduled caste population harijan was the major chunk contributor for both of the kol groups the chunk donation of austroasiatic populations was significantly lower the distinct ancestry of one kol sample can be also seen in this analysis the maximum likelihood tree obtained from the finestructure analysis placed both of the kols together with the indoeuropean populations kol1 and kol2 fell in to two distinct clusters together with other populations kol1 is distributed in to two subclusters whereas kol2 form their five largely own subclusters where one was shared with the harijans to see if the kol1 and kol2 belong to same pankol ancestry we computed d statistics asking if there is any population which share more alleles with either of these when we filtered the top 10 d values for kol populations we didnt 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 in the populations 27 28 29 in an inbred populations roh tend to be longer and recent in time as recombination doesnt get enough time to break the identicalbydescent segments conversely shorter roh segments are considered to be older both of the kol groups showed lower roh segments when compared with the austroasiatic speaking populations suggesting their different population history as well as high effective population size in order to gain information about their maternal ancestry sharing we analysed mitochondrial dna sequences of the hvsi and selected coding regions both of the kol groups shared m2 m3 m18 m30 and r5 haplogroups our previous study has identified haplogroup r7 as highly frequent haplogroup among north mundari speakers 30 however we didnt find any sample of kol belonging to haplogroup r7 the mtdna haplogroups of kols were quite distinct from the general trend of mundari populations 10223031 we utilised haplogroup frequencies to calculate the principal components we have used geographic labels in one plot and linguistic labels in another plot in the geographical placement the pattern followed the isolationbydistance model the uttar pradeshmadhya pradesh kol clustered with uttar pradesh and madhya pradesh populations whereas maharashtra kol clustered with the neighbouring andhra pradesh populations in terms of linguistic affiliation kol1 clustered closely with populations speaking indoeuropean languages whereas kol2 cluster with andhra pradesh dravidian speakers therefore their maternal ancestry also precludes their austroasiatic 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 speakers the genetic structure of these kols is more akin to the north indian indoeuropean scheduled caste population known as the harijan this finding matches our recent finding that harijans and kols shared short ibd 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 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 sidebyside 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 it was striking that in our survey to the sampling regions 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 indoaryan languages instead ie bhojpuribagheli 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 doublechecked their ethnolinguistic identity with linguistic expert involved in the study since language shift has previously been reported amongst central indian tribes 1032 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 720 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 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 was sampled from the geographic borders of uttar pradesh and madhya pradesh states and second group was collected from maharashtra state 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 highquality samples 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 hvsi region we first classified them in their tentative haplogroups based on the hvsi mutation and further confirmed these findings by genotyping for coding region mutations 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 plink19 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 similar to our previous studies snps with more than 3 missingness across individuals or with a minor allele frequency less than 10 were removed 2335 we have also removed snps deviating from hardyweinberg 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 that can affect both principal component analysis and admixture we thinned the data set by removing one snp of any pair in strong ld r2 04 in a window of 200 snps 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 v13 38 with a random seed number generator on the ldpruned data set 25 times from k 2 to k 15 the best supported clustering was shown at k 12 2123 given the result of the pc and admixture analysis we removed one outlier sample from the kol2 group for further populationbased analysis the outgroup f3 statistics 39 were calculated as f3 where x was any other population and yoruba served as an outgroup to investigate the pankol ancestry we performed d statistics by taking african yoruba as an outlier d whereby x was the other indian populations for haplotypebased 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 332 40 and modelled haplotype sharing among studied individuals by using chromopainter the chromopainter creates a coancestry matrix where each and every individual share chunkcounts and chunklength with each other 26 thereafter finestrcuture algorithm cluster them in to subgroups based on the pattern of coancestry matrix the data of finestructure were used to construct the maximum likelihood tree using mega 41 runs of homozygosity were performed to investigate the inbreeding and ancestral homozygous component sharing for roh estimation we applied window size 1000 kb a minimum of 100 snps per window allowing one heterozygous and five missing calls per window 27 competing interests the authors declare no competing interests

both classical and recent genetic studies have unanimously concluded that the genetic landscape of south asia is unique at long distances the isolationbydistance 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 indepth 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 indoeuropean and dravidian speaking populations the geographicgenetic 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 realtime tests can be performed on existing hypotheses the indian subcontinent is renowned for the cultural linguistic and genetic diversity of its inhabitants 12 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 indoeuropean and tibetoburman 67 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 79 in fact the language family came to be known as monkhmerkolarian 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 monannam 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 1115

of the french telecommunications operator our results are presented in the form of a narrative that renders the polyphonic and dialogic dimensions of the processes under study on the basis of indepth 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 the rise of a new hegemonic despotism steering workers resistance within the firm the emergence of a counterhegemony reaching out to the broader civil society and 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 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 neogramscian studies on hegemonic transformation by showing the role of a hybrid space through which resisters produced this cascade effect in our neogramscian perspective a hybrid space is formed of microand mesoorganizational 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 als work in educational studies this notion serves to capture the crossinstitutional 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 neogramscian 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 neogramscian 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 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 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 micropolitics through which employees might be able to resist managerially imposed subjectivities including outright rejection feigned acceptance or pragmatic negotiation the ascendance of such radical pluralism was in turn critiqued for celebrating localized and heterogeneous struggles or a form of anemic decaf resistance reduced to the clever tricks of the weak within the order established by the strong 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 or impactful 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 neogramscian perspective suggest that it may be suitable to such an enlarged reading of resistance first gramsci 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 second neogramscian hegemony refers to a process of struggle rather than an existing state of consensual domination 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 the concepts of hegemonycounterhegemony 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 our choice of a neogramscian 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 neogramscian perspective have been mobilized at the macro level to account for the rise of a global neoliberal hegemony and the related financialization of angloamerican and european economies at the level of the firm this trend has been traced by following the diffusion of a shareholder value ideology that entails massive workplace restructuring via cost cutting downsizing externalization and the weakening of collective forms of workers organization 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 that is the arbitrary application of coercion gill suggested that a less consensual order was emerging one based increasingly on the politics of supremacy and coercion rather than built from broadbased popular legitimacy burawoy 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 visàvis anotherthat is the opportunity costs of capital workers resistance to neoliberal hegemony has been studied in varied organizational settings such as the airline engineering and artistic professions multinationals plant shutdowns or the privatization of public services this body of work has departed from neogramscian readings by focusing on the everyday practices of resisting subjectivities the discursive struggles between competing narratives whereby workers collectively engage in resisting or workers capacity to reintroduce a symbolic authority in a psychoanalytical reading of resistance these theoretical contributions thus addressed micropractices of resistance that did not openly challenge or unsettle the dominant order andor left aside a broader context enabling workers resistance to become more impactful by contrast a neogramscian perspective would acknowledge the role of an enabling context that took the form of a statebased legal apparatus that workers were able to mobilize in their struggle against neoliberal restructuring at the french factory studied by vidaillet and gamot 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 hence workers capacity to draw on levers and resources located beyond the firm may prove instrumental to challenging neoliberal hegemony as shown in the neogramscian study of contu et al 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 pondered whether the historically separated realms of workplace politics and civil society have become increasingly blurred 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 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 neogramscian perspective broader social movements have been cast as central forces of counterhegemony understood as the creation of an alternative hegemony on the terrain of civil society which conveys an alternative ethical view of society the most systematic attempts to integrate discursive material and organizational dimensions into the study of counterhegemony have been made by levy and coauthors in transnational fields where civil society actors pressed multinationals to intervene on social or environmental issues such as climate change access to aids drugs in developing countries economic inequalities in global production networks or standards for corporate social responsibility and sustainable coffee yet counterhegemonic struggles linking the workplace to civil society have remained understudied with the significant exception of antisweatshop 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 such campaigns epitomize the escalation of workplace struggles that spill over into civil society however southern actorsboth civil society and workershave been mainly involved as secondary subjects in these transnational campaigns where northern activists tend to play a leading role 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 neogramscian 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 micropractices 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 playersthat is nongovernmental organizations corporations governmental institutionsan 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 mesoorganizational processes whereby resistance could span the three main sites of neoliberal hegemony and induce transformations in these sites the notion of inbetweenness 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 sojas 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 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 colonizers ways of knowing in educational studies gutiérrez baquedanolopez alvarez and chiu 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 communitys or homebased discourses and schoolbased discourses so as to develop stronger understandings of the natural world it is in the latter field that moje et al 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 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 neogramscian perspective to challenge and reshape the dominant hegemony research setting and method the resistance movement at the french telecom company 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 casting ft as a fairly unique exemplar of workplaceled 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 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 illbeing 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 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 60000 jobs or 40 of the national headcount in a decade 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 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 workrelated issues within the firm the observatory of stress and forced mobility which some of fts labor unions had set up as a nonprofit association preliminary interviews indicated that the observatory 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 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 openended 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 in this vein narrative scholarship is seen as overtly political in its capacity to give voice to the subject 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 which left space for a diversity of voices to be heard in our rendering of the story borrowing from todorov our story captures the three typical phases of a narrative out of an initial situation of relative stability a disruptive event occursa tipping point in the history of the firm here embodied by the restructuring plan next this triggers actionsin the form of workers resistance culminating in broad civil society debates after which calm is restored via a transformation of the initial situationthe ceo is dismissed and regulatory tools are established to detect and prevent psychosocial risks at work in the country inspired by a neogramscian 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 hegemonic despotism within the firm counterhegemonic resistance in civil society and 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 we first elaborated a precise chronology of events occurring at or around ft before and during the crisis this led us to record more than 100 events between the beginning of fts 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 wellsuited 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 further iteration among our narrative and the neogramscian 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 crosscutting 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 threestage 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 whereas the managerial elite endorsed a shareholder valueoriented ideology top executives retained significant autonomy visàvis financial markets and continued to collaborate closely with the government elite a pattern that lubatkin lane collin and very 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 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 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 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 the implementation of next was to play a central role in the 2009 crisis downsizing objectives were particularly ambitious with a target of 22000 job cuts over the period 2006 to 2008 this was coupled with a largescale 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 midterm 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 fts historical culture and social regulation 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 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 whats that for we were in full crisis it had not yet come out in the media but it was terrible and he didnt care at all labor unions also played a role in the rise of managerial abuses by failing to act as a counterpower 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 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 statusfor which the ft unions had fought hard over two decades of privatizationhad 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 emergence of a counterhegemonic front while next unfolded taking the drunken boat of ft to insane heights of managerial violence a number of resistance initiatives were launched these were mostly spearheaded by the labor union sud set up at ft in 1989 in opposition to the firms privatization as a founding member of the french alterglobalization 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 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 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 established by unionists from sud and the cgc a union that had seen new leaders emerge during fts startup acquisitions in the late 1990s 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 delegatespatrick ackerman at sud and pierre morville at cgcwho 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 backed by the relatively abundant material resources of the two unionsa legacy of generous labor union endowment at ftand 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 disciplinesmainly sociologyto produce a large amount of surveys and research 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 illbeing 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 however not all labor unions supported this surge of resistance neither the cfdt nor the wellestablished cgt 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 fts historical bloc union representatives who opposed the observatory favored a posture of negotiation that is making specific collective demands to the fts management rather than a more radical but openended posture of denunciation on topics new to labor unions 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 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 workrelated 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 firms 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 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 largescale 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 firms 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 his discourse centers on the human side the public mission recruitment and the end of massive downsizing plans the situation is totally different 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 unionsbut 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 the state also took a second line of action an informal collaboration emerged between labor inspectors covering fts 450 sites in france and the general directorate of labor of the french ministry of labor this led to the inspectors agreeing to communicate field information to hervé lanouzière the dgts technical counselor in charge of work conditions this pooling of information shed light on critical aspects of fts 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 its 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 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 officersthe ceo hr director and coowho 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 workrelated stress darcos aimed to have the 1500 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 governments 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 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 countrylevel 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 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 systemwide reconfiguration 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 counterhegemonic 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 fts 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 firmsud and cgcand in the broader civil societyfor 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 resourcesthe 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 leftwing 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 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 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 powerknowledge 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 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 selfesteem and give meaning to their harrowing experiences having common counterhegemonic 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 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 states hierarchical lines notably via two former labor inspectorsincluding lanouzièrewho acted as technical counselors of the dgt jeandenis combrexelle and minister of labor xavier darcos neither of these highranking officials had the same social and educational background as the french elite and both were deeply concerned by the series of suicides 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 anglosaxon 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 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 richards 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 even though management practices were acknowledged to be particularly destructive in the case under study workplace bullying has become pervasive and workrelated suicides are estimated to be on the rise in major industrial economies underscoring the brutal logics of expulsionfrom jobs houses land and in our case life itselfwhich sassen 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 firms management for harassing workers a neogramscian 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 mesolevel between individuals and dominant institutions and spanning the three sites of hegemony counterhegemony 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 we recast this notion and extended it to a neogramscian perspective where it serves to highlight the crossinstitutional 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 hegemonycounterhegemony such features distinguish our neogramscian perspective on hybrid spaces from the related notion of free space which has been mobilized in studies on workplace and civil society resistance free spaces are seen as smallscale settings located outside the control of dominant groups which are voluntarily participated in and generate the cultural challenge that precedes or accompanies political mobilization the fact of being located outside the firms managerial control in the realm of civil society was certainly important to the obs capacity to launch and sustain a counterhegemonic movement nevertheless our neogramscian take on hybrid space does not presuppose the informality and marginality of a free space visàvis 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 from the perspective of neogramscian studies a core contribution of our research is thus to show that political contestation may lead to systemic change whenand ifit 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 particularlybut not exclusively 2 in the firm and the state so as to achieve hegemonic transformation our findings support the assumption that counterhegemony 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 we emphasize the crossinstitutional hybridity of the micro processes that enabled such counterhegemony 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 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 hegemonycounterhegemony sharing or navigating through diverse cultural procedural and discursive resources in our case among labor unionists civil servants academics journalists and other resisters generating new resources that is new political views on suicides and psychosocial risks at work new legal and managerial procedures at the workplace and leveraging these resources to transform dominant discourses and practices as conveyed in our study by the ministry of finance and the firms top management we suggest that this scheme could offer a blueprint for new practices ofand research onresistance 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 divulgatingand as a compromise to euphemize their rendering ofthe suicide events at french telecom company 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 themselveswhich could be at times very spectacularwould not be specified in further suicide announcements declaration of conflicting interests the author declared no potential conflicts of interest with respect to the research authorship andor publication of this article

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 julythe 18th since early 2008which 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 longlasting 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 neogramscian 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 counterhegemonic forces emerged and successfully opposed the neoliberal hegemony that materialized in the privatization financialization and heavy restructuring 846408j mixxx10

introduction colonias are unincorporated and unregulated periurban settlements along the united statesmexico border that are home to primarily mexicanorigin 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 in this county in 2010 86472 residents lived in 321 communities defined as colonias 5 westway is home to about 4000 of these individuals the population is 97 hispanic and 455 are foreignborn and of those foreignborn residents only 222 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 socioenvironmental 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 characterize westway residents rates of mental health outcomes and access to mental health care and assess intraethnic disparities 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 137 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 usmexico border 8 chronic illnesses such as diabetes and asthma are also prevalent in colonias 3 unsafe environmental conditions 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 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 wellbeing of individuals 10 downey and van willigen 11 argued that environmental stressors can have longlasting effects on the psychological wellbeing 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 nationallevel datasets in spain 12 and portugal 13 mental health and access to care for hispanics given that colonia residents are mexicanorigin hispanics it is relevant to this study that hispanics have lower rates of mental disorders than nonhispanic 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 usborn counterparts 1516 hispanics that have acculturated to white middleclass 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 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 cooccur 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 foreignborn 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 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 is home to a lowincome population 492 live below the poverty line 154 have an income of less than 10000 per year and 35 received public assistance during the last 12 months only 554 of westway residents are in the labor force mainly in service occupations sales construction maintenance and transportation 6 ninetyeight percent of residents are hispanic and only 94 report speaking only english at home over 643 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 doortodoor surveying between march and august 2012 every ninth household 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 for the analysis we excluded the one nonhispanic respondent and four relatively affluent respondents for a final n of 98 lowincome 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 communitybased 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 andor 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 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 mental health diagnosis is coded 1 if the respondent said yes to a diagnosis of anxiety depression andor another mental health illness it is coded 0 if the person had none of those diagnoses 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 psychological symptoms in the last 4 weeks was created by factor analyzing six likert items descriptive statistics for the likert items contained in this factor are included in table 3 along with the component loadings physical symptoms in the last 1 week was created by factor analyzing seven likert items 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 modes for the continuous dependent variables collinearity diagnostics ie variance inflation factors and tolerance revealed that there were no issues with multicollinearity all independent variables met the standard of a vif below 29 and a tolerance value greater than 04 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 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 of the total respondents 186 had insurance through their workplace 20 had medicare and 7 had medicaid eight percent had other forms of health insurance 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 andor excess worry there were three significant findings and one finding that approached significance a oneunit increase in the language acculturation scale leads to a 25 times increase in the odds of a respondent experiencing stress andor excess worry likewise females are 26 times more likely to feel stressed andor worried than males individuals with one or more comorbid conditions are 29 times more likely to experience stress andor excess worry a oneunit increase in the industrial concerns scale results in a 25 times increase in the odds of a respondent experiencing stress andor worry usborn individuals are 08 times less likely to experience stress andor excess worry than foreignborn individuals for the logistic model predicting a diagnosis of a mental health condition there were two statistically significant findings females and those who experienced one or more life events in the past year are both 69 times more likely to be diagnosed with a mental illness for the ols model predicting the respondents psychological symptoms of distress in the last 4 weeks four variables were significant at the p 005 level for individuals with at least one comorbid condition there is a 04 increase in the psychological symptoms scale for females there is an increase of 05 in the scale when compared to males and there is an increase of 07 for those who experienced one or more life events in the last year a oneunit increase in the industrial concerns scale results in an increase of 0255 in the psychological symptoms scale for the ols model predicting the respondents physical symptoms of distress in the last week there were three significant predictors females had a score on the physical symptoms scale that was 05 higher than males and those who experienced a life event also had an increase of 04 in the scale a oneunit increase in the industrial concerns scale resulted in a 02 increase in the physical symptoms scale discussion in terms of rates of mental health problems westway residents have rates of diagnosed depression that were more than three times the rates for texas residents and the us population in any given year 3031 similarly their anxiety rates are higher than the national rate of 18 in any given year according to the national institute of mental health 3233 thirtysix 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 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 seventyone 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 twentythree 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 nonprofit 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 statesponsored 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 which is 107 for every 100000 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 3637 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 3637 in terms of assessing intraethnic 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 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 in el paso to affect policy in a number of issues including environmental health the newer iaf group in the region border interfaith has worked with leaders in westway to make the texas commission on environmental quality aware of their environmental concerns after several years of pressure tceq has increased their oversight albeit on a small scale 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 and a lower likelihood of a mental illness diagnosis and fewer psychological symptoms in the last 4 weeks 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 foreignborn and higher levels of stress and worry could be attributed to the fact that westway is located near the usmexico border and that there are routinely law enforcement and border protection officials in the area this police presence could cause stress and concern for foreignborn 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 foreignborn 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 foreignborn 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 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 healthdamaging effects of acculturation 17 as expected usbirth and language acculturation are correlated at 0351 it means that holding constant the effect of nativity 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 as a predictor of higher rates of actual diagnosed mental illness in a study of mental health outcomes postdisaster in el paso county researchers also found that language acculturation was a risk factor for a mental health problem postflood 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 stressworry and diagnosis variables 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 cooccur with depression this finding is concerning from a public health perspective being a female was a significant predictor of the diagnosis psychological symptoms and physical symptoms variables and it approached significance for stressworry 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 of diagnosed mental illness psychological symptoms and physical symptoms of distress limitations the main limitation of this study is the small sample size which is reflective of the small community under study a larger sample could allow for a more sophisticated statistical analysis secondly the center for epidemiological studiesdepression 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 communitybased participatory project we did not collect information about when the person was diagnosed with their mental illness and hisher 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 3942 this case study in a us colonia contributes to that goal by illustrating the health challenges and disparities present within this group of largely mexicanorigin lowincome 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 intraethnic disparities in hispanic health outcomes the findings also highlight deficiencies in mental health care in the us especially for lowincome periurban 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 marquezvelarde 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 and with the helsinki declaration of 1975 as revised in 2000 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

unregulated residential settlements along the us side of the usmexico border often called colonias are mainly populated by lowincome mexicanorigin 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 n98 conducted through a communitybased 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 lowincome minorities in isolated communities keywords mental health colonia hispanic environmental concerns mental health care usmexico border 1 officially westway is a collection of seven colonias westway 1westway 7 see elpaso6shtml although residents treat it as one contiguous community