Living with Hiv/Aids: an Ethnograpy of Care in Western Kenya
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LIVING WITH HIV/AIDS: AN ETHNOGRAPY OF CARE IN WESTERN KENYA A thesis submitted to The University of Manchester for the degree of PhD in the Faculty of Humanities. 2010 HANNAH BROWN Social Sciences/Social Anthropology Contents Page List of Figures and Tables 7 Abstract 8 Declaration 9 Copyright Statement 10 Acknowledgements 11 Map of Kenya 13 Map of Nyanza Province 14 Introductions 15 Practices of care 16 Theorising care 19 Care as methodology 22 Locations 22 Chapter 1. Contextualising the Epidemic 28 The Moi government and the Kenyan state: 1978-1989 29 A note on ethnicity in Kenya 32 Health care in the first Nyayo decade: unequal distribution of resources 34 Kenya under Moi in the 1990’s: Structural adjustment, multiparty politics 36 AIDS policy under Moi (1985-99): Accusations and denial 38 2 AIDS as a ‘national disaster’ (1999-2002): NACC, PACCs, DACCs and CACCs 41 ARVS come to Kenya 43 ‘Total war on AIDS’: the Kibaki government from 2002 44 Oranges and bananas: The NARC falls apart 46 Care in Kenyan AIDS policy from 2003: The arrival of the ‘big three’ 47 Chapter 2. Home and Hospital as Domains of Care 51 ‘Culture problems’: Discourses on HIV prevalence in Western Kenya 51 Defining care 60 Home 65 Home, growth and prosperity 67 Hospital 71 Inequalities within 72 Inequalities without 73 Conclusion 77 Chapter Three. Home-Based Care: Policy as practice 78 Introduction 78 Part One: Introducing Home-Based Care 80 Home-based care 80 Kagot development group 81 Community health workers 83 3 Part Two: Embedded Enactments 87 Policy as practice 87 Home visits 89 Embedded care 93 Guests and visits; care and gifts 96 Nyamreche and Luo medicine 100 Part Three: Professionalising enactments 104 Professionalising model 104 Uniforms 108 Hellen and her uniform 110 Record-keeping and legibility: “embedded” and “professionalising” in conflict 112 The limits of professionalization: ‘Attachment’ at the hospital 114 Embedded and professionalising make a policy 115 Chapter 4. “Home-Based Care is not a new thing” 120 Introduction: Government and home 121 Home-based care as neo-liberal? 123 A meeting at Kagot development group 124 Home-based care as ‘engaged universal’ 128 The tangle of ideas 129 Women’s groups and health care in historical context 131 Community 133 4 Women’s groups, patron-client politics and the distribution of resources 135 Feminine distinction 140 Conclusion 141 Chapter 5. The Patient Support Centre: Relations of care in HIV treatment. 144 Introduction 144 Being brave: Becoming a client 145 Biological citizenship and relations of care 150 The Patient support centre 153 Becoming jokinda 157 Counselling 159 Defaulters 161 Conclusion 165 Chapter 6. Fear/respect and medical care 167 Introduction 167 Care in the labour room 168 Harsh and cruel 170 Hierarchy and care: Luoro relationships in hospital and at home 172 Care, abuse and the proper management of pain 175 5 Other kinds of care 177 Conclusion 179 Chapter 7. Hospital Domestics: Care work on the wards 181 Introduction 181 Into the wards 182 On hospital spaces 183 Spatial practice on the wards: Making medical spaces 186 Being admitted 190 Caregivers and patients: Making domestic spaces 191 Mobile domesticity 195 How, then, to understand space in this hospital? 196 Conclusion: Towards an anthropology of care 200 In praise of shallow ontologies 201 Towards an anthropology of care 203 Word Count: 80,217 6 List of figures and tables Page Figure 1. Map of Kenya 13 Figure 2. Map of Nyanza Province 14 Figure 3. Coffins for sale on Kagot's main street, outside Pona (Swa. Heal) Chemist 24 Figure 4. Map detailing the locations of the main ethnic groups in Kenya 32 Figure 5. Language Map of Kenya 33 Figure 6. Poster for the “Crush AIDS” campaign 39 Figure 7. Antenatal HIV prevalence in sentinel surveillance sites in Western Kenya 1990-2000 41 Figure 8. Annual amounts dispersed by ‘the big three’, 2001-5 48 Figure 9. HIV prevalence in Kenya by province, Kenya AIDS Incidence Survey 2007 52 Figure 10. Signboards outside Kagot District Hospital 75 Figure 11. “A Possible Home Care System” 81 Figure 12. A Wall in Kagot Development Group Office 104 Figure 13. The Community Health Workers visit the District Hospital dressed in their uniforms 110 Table 1. Provincial shares of development expenditure for rural health 1987-8 36 Table 2. Essential elements of CHBC 127 7 Abstract This thesis, ‘ Living with HIV/AIDS: An ethnography of care in Western Kenya’, is based upon 18 months of ethnographic fieldwork carried out in Central Nyanza, Kenya, between 2005- 2007. It studies practices of care against the backdrop of the HIV/AIDS epidemic, which has impacted the region severely. The thesis explores how home and hospital are established as domains of care through practice. It draws upon ethnographic material collected from within a District Hospital, a Community-Based Organisation and people’s homes. The thesis follows practices of care across divergent domains of social life to consider how practices of care within Luo networks of kinship and relatedness intersect with governmental interventions to manage HIV/AIDS. The thesis describes two governmental projects introduced to administer HIV/AIDS care in this region. It considers Home-Based Care, an HIV/AIDS response in which Community Health Workers are trained to support particular aspects of care at home, focusing on the practices of care employed by Community Health Workers as they visit sick people at home and attend organisational meetings. The thesis also describes the landscape of HIV care in the District Hospital, including the delivery of anti- retroviral therapy. The focus here is on the relationships between caring practices in the hospital and at home, and the divergent responsibilities to care experienced by hospital staff and family members. The main argument of the thesis is that care is a particularly useful analytical tool for anthropology because practices of care take place across many different domains of social life, cutting across the boundaries that have formed the traditional focus of anthropological study. Studying practices of care illuminates the production of bounded domains of social life whilst simultaneously drawing attention to similarities of practice across different domains. Care provides a way of understanding the complex social landscape that has developed as people in Western Kenya endeavour to live with HIV/AIDS. Submitted by Hannah Brown to the University of Manchester for the degree of PhD in Social Anthropology, in the faculty of Humanities, 2010. 8 Declaration I declare that no portion of the work referred to in the thesis has been submitted in support of an application for another degree or qualification of this or any other university or other institute of learning 9 Copyright Statement i. The author of this thesis (including any appendices and/or schedules to this thesis) owns certain copyright or related rights in it (the “Copyright”) and she has given The University of Manchester certain rights to use such Copyright, including for administrative purposes. ii. Copies of this thesis, either in full or in extracts and whether in hard or electronic copy, may be made only in accordance with the Copyright, Designs and Patents Act 1988 (as amended) and regulations issued under it or, where appropriate, in accordance with licensing agreements which the University has from time to time. This page must form part of any such copies made. iii . The ownership of certain Copyright, patents, designs, trade marks and other intellectual property (the “Intellectual Property”) and any reproductions of copyright works in the thesis, for example graphs and tables (“Reproductions”), which may be described in this thesis, may not be owned by the author and may be owned by third parties. Such Intellectual Property and Reproductions cannot and must not be made available for use without the prior written permission of the owner(s) of the relevant Intellectual Property and/or Reproductions. iv. Further information on the conditions under which disclosure, publication and commercialisation of this thesis, the Copyright and any Intellectual Property and/or Reproductions described in it may take place is available in the University IP Policy (see http://www.campus.manchester.ac.uk/medialibrary/policies/intellectual-property.pdf), in any relevant Thesis restriction declarations deposited in the University Library, The University Library’s regulations (see http://www.manchester.ac.uk/library/aboutus/regulations) and in The University’s policy on presentation of Theses 10 Acknowledgements My greatest debt is to the people of “Kagot”. There are some whom I would like to thank by name here, but I worry that to do so would identify the field site which I have attempted to hide in this thesis. I would ask that my decision not to name people personally be seen as a sign of my gratitude, and of the respect I have for those who helped with my research. I am especially grateful to the staff of “Kagot District Hospital”. The DASCO’s vision and support for this project created the possibilities which made this research possible. I am grateful to the District Medical Officer of Health, the Medical Superintendent and Assistant Medical Superintendent, the staff of the Voluntary Counselling and Testing Centre, the Patient Support Centre, PMTCT/MCH and those who worked on the wards. Thank you all for answering my questions, showing me your work and letting me into your lives. At Kagot Development Group I am indebted to the two women who ran the group and to the Office Girls. I also owe a great debt to each and every one of the Community Health Workers and members of the support group who took me to visit their clients and welcomed me into their homes.