Isaacs, Anna (2018) Keeping healthy and accessing primary and preventive health services in Glasgow: the experiences of refugees and asylum seekers from Sub Saharan Africa. PhD thesis. http://theses.gla.ac.uk/8971/ Copyright and moral rights for this work are retained by the author A copy can be downloaded for personal non-commercial research or study, without prior permission or charge This work cannot be reproduced or quoted extensively from without first obtaining permission in writing from the author The content must not be changed in any way or sold commercially in any format or medium without the formal permission of the author When referring to this work, full bibliographic details including the author, title, awarding institution and date of the thesis must be given Enlighten:Theses http://theses.gla.ac.uk/ [email protected] Keeping healthy and accessing primary and preventive health services in Glasgow: the experiences of refugees and asylum seekers from Sub Saharan Africa Anna Isaacs BSc, MSc Submitted in fulfilment of the requirements for the Degree of Doctor of Philosophy Institute of Health and Wellbeing, College of Medical and Veterinary Life Sciences, University of Glasgow September 2017 2 Abstract Background and aims: Recent decades have seen material shifts in global migration flows. Migrants now come to the UK for an increasing number of reasons and from an increasing number of countries. This presents a challenge for health services that must provide care to individuals with a broad range of needs. In particular, there is concern that asylum seekers and refugees (ASRs) are at heightened risk of poor wellbeing and of receiving suboptimal healthcare. Concurrent with these shifts in migration, increasing attention is being paid to non- communicable diseases (NCDs), which are now the most significant drivers of morbidity and mortality in most regions of the world. In the UK, the burden of NCDs is not evenly distributed, with inequalities related to ethnicity and socioeconomic status shaping an individual’s risk of ill health. Little is known, however, about how diverse migrant groups, including ASRs, conceptualise health and respond to health prevention messaging. Against this backdrop, this thesis aims to understand the health-related experiences of one such group – asylum seekers and refugees (ASRs) from Sub Saharan Africa living in Glasgow Scotland. Specifically, it explores: a) perceptions of health, wellbeing, and illness causation, b) experiences of accessing primary and preventive healthcare, and c) the factors influencing these perceptions and experiences. It also seeks to elucidate professional perspectives on ASR health. Methods: To gain an in depth understanding of ASR health perceptions and experiences, as well as professional perspectives, a focused ethnography was undertaken. This approach utilised four qualitative methods: community engagement, participatory focus groups, semi- structured interviews, and go-along interviews. In total 12 primary care and public health professionals were interviewed, and 27 ASRs took part in either a focus group, an interview, or both. The thesis took a theoretically informed approach, seeking to determine whether and how two theories – ‘candidacy’ (Dixon-Woods et al 2005) and ‘structural vulnerability’ (Quesada et al 2011) – might deepen our understanding of ASR health. 3 Results: Candidacy enhanced understanding of how ASRs identified and responded to messages about ‘healthy lifestyles’. ASR participants considered keeping healthy to be an individual responsibility, with diet and exercise highlighted as especially important. At the same time, however, perceptions and experiences of health and wellbeing were shaped by a number of structural influences, which limited the capacity of ASRs to engage in health practices. Therefore, while ASRs considered health to be an individual choice in theory, they did not necessarily feel they had the ability to be healthy in practice. The theory of structural vulnerability proved useful in identifying the wider structural determinants that impacted on an individual’s capacity to respond. There were several important structural influences, including poverty, racism, discrimination, and language barriers. The greatest negative influence, however, and one that compounded all the others, was the asylum process. This diminished individuals’ capacity to identify as candidates for prevention messages, engage in preventive health practices, and/ or access care in an optimal fashion. Conclusions: Efforts to engage ASRs in preventive health programmes and practices must take into account the ways in which the immigration and asylum system acts as a determinant of health, affecting both what it means to be healthy and what capacity individuals have to engage. The NHS, together with non-statutory bodies, has a role to play in mitigating some of the vulnerabilities to which ASRs are subject. 4 Table of Contents Abstract ................................................................................................................................. 2 List of Tables ........................................................................................................................ 8 List of Figures ....................................................................................................................... 9 Preface ................................................................................................................................. 10 Acknowledgements ............................................................................................................ 12 Author’s Declaration ......................................................................................................... 13 Abbreviations ..................................................................................................................... 14 Definitions ........................................................................................................................... 15 Chapter One: Introduction ............................................................................................... 17 1.1 Refugees and asylum seekers in the UK ................................................................ 21 1.1.1 Refugees, asylum seekers and ethnic minorities in Glasgow ......................................................... 22 1.2 The Scottish policy context ...................................................................................... 24 1.3 Problematising key terms: culture, ethnicity, and race ........................................ 25 1.3.1 Culture ............................................................................................................................................ 25 1.3.2 Race and ethnicity .......................................................................................................................... 27 1.4 Aims and research questions ................................................................................... 29 1.5 Format of the thesis ................................................................................................. 30 Chapter Two: Literature review: health, prevention, and access to healthcare .......... 33 2.1 Scope of review and search strategy ....................................................................... 34 2.2 Broad trends in migrant health research ............................................................... 35 2.2.1 Migrant health vs. ethnicity and health .......................................................................................... 36 2.2.2 Divisions between migrant and ethnic minority health and health inequalities research .............. 37 2.2.3 Concerns around data and definitions ............................................................................................ 37 2.2.4 Culture and cultural competence .................................................................................................... 39 2.3 Access to primary and preventive care .................................................................. 40 2.3.1 Access to primary care ................................................................................................................... 41 2.3.2 Factors impacting on healthcare use .............................................................................................. 42 2.3.3 Problematising entitlement ............................................................................................................. 47 2.3.4 Focus on preventive care ................................................................................................................ 49 2.3.4.1 What makes a targeted intervention? ..................................................................................... 50 2.3.5 Culture and health .......................................................................................................................... 51 2.3.6 Language ........................................................................................................................................ 55 2.3.7 Non-health priorities ...................................................................................................................... 56 2.3.8 Professional perceptions ................................................................................................................. 56 2.4 Situating ASRs from Sub Saharan African in Glasgow ....................................... 58 2.4.1 ASR health and wellbeing in the UK ............................................................................................. 58 2.4.2 Statutory responses to refugees and asylum seekers ...................................................................... 59 2.4.2.1 Access to primary care ........................................................................................................... 60 2.4.3 Sub Saharan Africans in Glasgow .................................................................................................. 61 2.5 Conclusion ................................................................................................................ 63 Chapter Three: Theoretical perspectives ........................................................................ 65 3.1 Alternative theories .................................................................................................. 66 3.1.2 The Patient Centred Access to Care conceptual framework .......................................................... 66 3.1.3 Syndemics theory ........................................................................................................................... 66 3.2 Candidacy ................................................................................................................. 67 5 3.2.1 The construction of candidacy ....................................................................................................... 70 3.2.2 Utility of candidacy as a framework .............................................................................................. 71 3.2.3 Candidacy and prevention .............................................................................................................. 72 3.2.4 Critiques of candidacy .................................................................................................................... 73 3.2.5 Moving toward a critical perspective ............................................................................................. 75 3.3 Structural vulnerability ........................................................................................... 75 3.3.1 Origins of structural vulnerability .................................................................................................. 76 3.3.2 Theorising structural vulnerability ................................................................................................. 78 3.3.3 Unpacking perceptions ................................................................................................................... 79 3.3.4 Integrating the individual with the structural ................................................................................. 80 3.3.5 Moving beyond social determinants of health ............................................................................... 81 3.4 Constructing a comprehensive analytical lens ...................................................... 83 3.4.1 Breadth and depth ........................................................................................................................... 84 3.4.2 Bridging structure and agency ........................................................................................................ 86 3.5 Conclusion ................................................................................................................ 86 Chapter Four: Methodology ............................................................................................. 88 4.1 Methodological Perspectives ................................................................................... 88 4.1.1 Developing a disciplinary orientation ............................................................................................ 88 4.1.2 Positivism, social constructivism and critical realism ................................................................... 90 4.1.3 Rigour in qualitative methods and analysis .................................................................................... 92 4.1.4 Reflexivity & power in the research process ................................................................................. 93 4.2 Research design ........................................................................................................ 95 4.2.1 Ethnography ................................................................................................................................... 95 4.2.1.1 Focused ethnography .............................................................................................................. 96 4.3 Research design and development .......................................................................... 99 4.3.1 Field site ......................................................................................................................................... 99 4.3.2 Sampling and recruitment ............................................................................................................ 100 4.3.3 Ethical approval ............................................................................................................................ 101 4.3.4 Conducting the focused ethnography ........................................................................................... 103 4.3.4.1 PHASE 1: Community engagement ..................................................................................... 103 4.3.4.2 PHASE 2: Participatory mind-mapping ............................................................................... 105 4.3.4.3 PHASE 3: Interviews ........................................................................................................... 108 4.4 Analysis ................................................................................................................... 112 4.4.1 Data organisation .......................................................................................................................... 113 4.4.2 Data analysis ................................................................................................................................ 113 4.5 Research Questions ................................................................................................ 114 Chapter Five: Introduction to the results ...................................................................... 115 5.1 Layout of the results .............................................................................................. 115 5.2 The field site(s) ....................................................................................................... 116 5.3 The participants ..................................................................................................... 117 5.4 Participant stories .................................................................................................. 119 5.5 The all-pervasive experience of being a migrant ................................................ 121 Chapter Six: Narratives of health and wellbeing .......................................................... 124 6.1 What is health, and what keeps people healthy? ................................................ 125 6.1.1 Biological basis of health and illness ........................................................................................... 126 6.1.2 Role of ‘behaviour’ ...................................................................................................................... 129 6.1.3 The body as an indicator of health or illness ................................................................................ 132 6.1.4 Health as dependent on emotional wellbeing ............................................................................... 134 6.1.5 Health as influenced by the environment ..................................................................................... 137 6.2 Perceptions of, and engagement with, health practices ...................................... 138 6 6.2.1 Diet ............................................................................................................................................... 138 6.2.2 Exercise ........................................................................................................................................ 146 6.2.2.1 Access to exercise ................................................................................................................. 147 6.2.2.2 What facilitates exercise? ..................................................................................................... 149 6.2.3 Cleanliness ................................................................................................................................... 152 6.3 Perceptions of NCD risk, primary prevention and preventive care ................. 153 6.3.1 Perceptions of NCD risk .............................................................................................................. 153 6.3.2 Access to preventive services .................................................................................................. 157 6.4 Conclusions ............................................................................................................. 160 Chapter Seven: Access to services .................................................................................. 161 7.1 Access to primary care .......................................................................................... 161 7.1.1 Cultural differences in the production of candidacy .................................................................... 163 7.1.2 Physical access to services ........................................................................................................... 167 7.1.3 Experiences of engagement with professionals ........................................................................... 172 7.1.4 Interpreting ................................................................................................................................... 174 7.2 Access to social support ......................................................................................... 178 7.2.1 Role of community organisations ................................................................................................ 179 7.2.2 Role of volunteering ..................................................................................................................... 180 7.2.3 Navigating support ....................................................................................................................... 181 7.3 Conclusion .............................................................................................................. 183 Chapter Eight: Determinants of refugee and asylum seeker health ........................... 185 8.1 Impact of the asylum system ................................................................................. 186 8.1.1 The asylum process as all consuming .......................................................................................... 187 8.1.2 Uncertainty ................................................................................................................................... 189 8.1.3 Dehumanisation and lack of agency ............................................................................................. 190 8.1.4 Intersection with place ................................................................................................................. 194 8.1.5 The health impacts of destitution ................................................................................................. 196 8.2 The political/ media context around asylum and migration .............................. 198 8.3 Racism, discrimination, and ‘othering’ ............................................................... 200 8.3.1 Perceptions of racism in Scotland ................................................................................................ 201 8.3.2 Implications for wellbeing ........................................................................................................... 202 8.3.3 Implications for service use .......................................................................................................... 204 8.3.4 Being ‘other’ and using space ...................................................................................................... 205 8.4 Access to financial resources ................................................................................. 206 8.4.1 Impact of financial constraints on health practices ...................................................................... 208 8.4.2 Professional responses .................................................................................................................. 211 8.5 The neighbourhood environment ......................................................................... 212 8.5.1 Neighbourhood facilities .............................................................................................................. 213 8.5.2 Concerns around anti-social behaviour ........................................................................................ 214 8.5.3 Participant geographies ................................................................................................................ 215 8.6 Conclusion .............................................................................................................. 217 Chapter Nine: Discussion ................................................................................................ 219 9.1 Research questions ................................................................................................. 219 9.2 Developing the Candidacy framework ................................................................. 223 9.2.1 Extending candidacy to prevention .............................................................................................. 223 9.2.2 Using the theory of structural vulnerability to enhance understanding of candidacy. ................. 224 9.2.2.1 Identification ......................................................................................................................... 225 9.2.2.2 Navigation and permeability ................................................................................................ 226 9.2.2.3 Presentation, adjudication, and offers and resistance ........................................................... 227 9.2.2.4 Operating conditions and local production of candidacy ..................................................... 227 7 9.3 The asylum system as a determinant of health ................................................... 230 9.4 Reflections on research with marginalised groups ............................................. 232 9.4.1. Recruitment challenges ............................................................................................................... 233 9.4.2 Interpreted interviews and establishing rapport ........................................................................... 233 9.4.3 Questioning formal ethics procedures .......................................................................................... 234 9.4.4 Ethics in practice: meeting expectations ...................................................................................... 236 9.4.5 Ethics in practice: paying participants ......................................................................................... 237 9.5 Strengths and limitations ...................................................................................... 237 9.6 Research implications and recommendations ..................................................... 239 9.6.1 Implications for UK asylum policy .............................................................................................. 239 9 6.2 Implications for Scottish integration policy ................................................................................. 239 9.6.3 Implications for the NHS ............................................................................................................. 240 9.6.4 Implications for primary care practice ......................................................................................... 241 9.6.5 Further research questions ............................................................................................................ 242 9.7 Conclusion .............................................................................................................. 243 Appendix A: MVLS ethics approval .............................................................................. 245 Appendix B: NHS GG&C R&D approval ..................................................................... 246 Appendix C: NHS GG&C letter of access ..................................................................... 248 Appendix D: Recruitment Poster ................................................................................... 250 Appendix E: Interview invitation letters ....................................................................... 251 Appendix F: Participant information sheets ................................................................. 256 Appendix G: Consent form – Ketso, ASR, public health, primary care interviews .. 274 Appendix H: Topic guides ............................................................................................... 276 Appendix I: ASR data collection form ........................................................................... 284 Appendix J: Literature review search terms ................................................................. 286 Appendix K: Ketso session data ..................................................................................... 287 Appendix L: Coding Framework ................................................................................... 290 Appendix M: Example OSOP ......................................................................................... 293 List of References ............................................................................................................. 294 8 List of Tables Table 1: Barriers to accessing care for migrants adapted from O’Donnell et al 2016 ......... 44 Table 2: Best practice for targeted interventions from Netto 2012:262-265 ....................... 50 Table 3: Description of each stage of candidacy ................................................................. 70 Table 4: Examples of focused ethnographies in health research ......................................... 98 Table 5: Interview numbers by type .................................................................................. 100 Table 6: Explanation of Ketso leaves ................................................................................ 106 Table 7: Participants in each Ketso session ....................................................................... 107 Table 8: ASR participant demographics ............................................................................ 118 9 List of Figures Figure 1: candidacy model as illustrated in Mackenzie et al 2013 ...................................... 69 Figure 2: features of a focused ethnography ........................................................................ 97 Figure 3: components of focused ethnography .................................................................... 99 Figure 4: fieldwork timeline .............................................................................................. 103 Figure 5: a KETSO board in progress ................................................................................ 108 Figure 6: recap of the candidacy framework ..................................................................... 125 Figure 7: modified candidacy framework .......................................................................... 230