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FINAL PHD New Layout 2 with Maps From dying with dignity to living with rules AIDS treatment and 'holistic care' in Catholic organisations in Uganda Rasmussen, Louise Mubanda Publication date: 2011 Document version Early version, also known as pre-print Citation for published version (APA): Rasmussen, L. M. (2011). From dying with dignity to living with rules: AIDS treatment and 'holistic care' in Catholic organisations in Uganda. Det Teologiske Fakultet. Download date: 05. okt.. 2021 From dying with dignity to living with rules ‐ AIDS treatment and ‘holistic care’ in Catholic organisations in Uganda PhD defence: Tuesday 24 May 2011 13.15 Auditorium 7 From dying with dignity to living with rules ‐ AIDS treatment and ‘holistic care’ in Catholic organisations in Uganda Louise Mubanda Rasmussen PhD thesis, January 2011 Centre of African Studies From dying with dignity to living with rules: AIDS treatment and ‘holistic care’ in Catholic organisations in Uganda © 2011 Louise Mubanda Rasmussen ISBN: 978-87-91838-35-4 Printing and binding by: Reprocentret – The copy centre of the Faculty of Social Sciences University of Copenhagen 2011 Published by: The Faculty of Theology University of Copenhagen Købmagergade 44-46 1150 København K Denmark www.teol.ku.dk Acknowledgements My thanks go first and foremost to the people in Kamwokya, Arua and Maracha who have shared their time, experiences and reflections with me, without which this dissertation would not have been possible. I am immensely grateful for your generosity. To my research assistants Norah Kirabo, Nelly Arikuru and Jimmy Candia I am equally indebted. My research has benefitted tremendously from your tireless help and insights. Thank you! For helping me getting started with my fieldwork, as well as being a helpful support along the way, I am grateful to Jacque Nakiwala and Ronald Kamara from the HIV/AIDS Focal Point at Uganda Catholic Secretariat. Philip Govule, the Diocesan HIV/AIDS Focal person in Arua diocese has been an invaluable support throughout this research and at the same time a great friend. In KCCC in Kampala, my thanks go especially to Godfrey Mabiriizi for being a significant contact person throughout the fieldwork. At Makerere University, I am grateful for the initial help of Dr. Edward Kirumira, Dean of the Faculty of Social Sciences, for setting up my research affiliation and being extremely helpful with securing research clearance from Uganda National Council for Science and Technology. At Makerere, the Child Health & Development Centre also became a basis of inspiration and networking, especially through the Working Group on Social and Political Aspects of AIDS in Uganda. In connection with the Working Group, as well as the Anthropological East Africa network in Denmark, I had many inspirational conversations with Jenipher Twebaze, Lisa Richey, Lotte Meinert and Susan and Michael Whyte. For offering me a second home in Kampala I am mostly indebted to my in- laws, the Tenywa family. I am also grateful for the hospitality and friendship our neighbours in Kisaasi showed my husband and I, especially Dan Matwire and Sharon Mutanga. Many thanks are due to Uganda Radio Network, and in particular ‘Baba Tony’ for all his help. In Arua, our neighbours the Anguyo family was an invaluable source of support and friendship. A special thanks goes to Lorna for her tireless efforts in trying to teach me Lugbara. I am also grateful to the staff at Arua diocese’s Communication Centre for allowing me to use their internet café as an office space. On the financial side, this PhD project has primarily been funded by the Faculty of Theology at the University of Copenhagen. But for the fieldwork in Uganda I wish to acknowledge the financial support of University of Copenhagen’s fund for Theology Students and Candidates, the Nordic Africa Institute and the Danish Council for Development Research (FFU). The main academic support and guidance for this dissertation has come from my supervisor Niels Kastfelt at the Centre of African studies, and my co-supervisor Lisa Ann Richey at Roskilde University. The different kinds of insights and critical questions you have brought to this project have been enriching. The research network on AIDS & Religion in Africa, which was established in June 2007, has been a critical source of inspiration and academic dialogue, while working on this PhD project. From the network, I especially wish to thank Rijk van Dijk, Marian Burchardt and Amy Patterson. I am grateful as well to all my colleagues at the Centre of African Studies for creating a great working environment. Thanks especially to Stig Jensen, Charlotte Zoey Søndergaard, Julie Oxenvad, Søren Gilsaa, Amanda Hammer and Troels Baagland. At the Graduate School of International Development Studies, Roskilde University, I am grateful to Christian Lund and Laurids Lauridsen for allowing me to participate in the PhD seminars. The ‘substitute’ PhD environment I had at IDS has been invaluable, and I thank all the PhD students there for sharing the ups and downs of a PhD project and providing helpful comments on chapter drafts. I also wish to thank the Nordic Africa Institute in Uppsala, where I spent three months in 2008 as a research fellow under the ‘Gender, Sexuality and HIV/AIDS’ research cluster. At NAI, Elina Oinas was, in particular, a great source of inspiration and motivation. A number of fellow PhD students have read and commented on earlier versions of this dissertation; my sincerest gratitude goes to Lene Bull Christiansen, Catrine Christiansen and Noelle Colquhoun Sullivan. I wish especially to thank Catrine Christiansen for her friendship and the help and encouragements she provided in the last phase of writing this dissertation. For copy-editing assistance I am grateful to Osama Hamza, Ishmail Nyanzi, and especially my sister Hanne Kvalheim – who has as always been one of the most reliable sources of support (and thanks to Magnus Kvalheim for looking after the twins in the meantime). I am also grateful to my close friends Tove Keldsen and Annette Jonsson for their many encouragements along the way; a special thanks to Tove for helping me with the front-page. The one person who has been a steady support throughout most of this project has been my husband Silas. Your patience and sense of humour, especially in the last couple of months, has been invaluable. I cannot begin to thank you for the many ways in which you have contributed to this project. I dedicate this dissertation to you, and to our future together. Thank you – webale nyo – awa’difo saru! Table of contents MAP OF UGANDA I MAP OF KAMPALA DISTRICT I MAP OF ARUA DISTRICT III 1. INTRODUCTION 1 SCALING­UP ARV TREATMENT IN SUB­SAHARAN AFRICA 2 AIDS & RELIGION IN AFRICA 3 THE AIDS RESPONSE IN MUSEVENI’S UGANDA 5 STUDYING CATHOLIC AIDS ORGANISATIONS IN UGANDA 7 RESEARCH IN KAMPALA AND ARUA 9 ANALYTICAL AND METHODOLOGICAL APPROACH: FOUCAULT­INSPIRED ETHNOGRAPHY 14 OUTLINE OF THE DISSERTATION 16 2. ANALYTICAL FRAMEWORK 18 BIO­POLITICS AND BIOLOGICAL CITIZENSHIPS 18 GOVERNMENTALITY AND NEO­LIBERAL RATIONALITIES 21 TECHNOLOGIES OF THE SELF 26 CHRISTIANITY, DEVELOPMENT AND HEALTH 30 GLOBAL ASSEMBLAGES AND LOCAL TRANSLATIONS 33 SOCIAL TECHNOLOGIES IN EVERYDAY LIVES 34 CONCLUSION: ANALYTICAL FRAMEWORK 39 3. FIELDWORK 41 INTRODUCTION 41 MARCH­JUNE 2008: MAPPING AND EXPLORING THE FIELD 41 FIELDWORK DECEMBER 2008 TO MAY 2009 45 PARTICIPANT/OBSERVATION 46 INTERVIEWS AND FOCUS GROUP DISCUSSIONS 49 NEGOTIATING ACCESS AND POSITIONS 53 LANGUAGE AND TRANSLATION 57 ETHICAL CONSIDERATIONS 60 CONCLUSION: ANALYTICAL IMPLICATIONS 64 4. THE CATHOLIC CHURCH AND ‘THE UGANDAN AIDS RESPONSE’ 65 HISTORY OF THE CATHOLIC CHURCH IN UGANDA 65 THE CATHOLIC CHURCH IN THE UGANDAN AIDS RESPONSE 74 5. PROVIDING TREATMENT, CARE AND SUPPORT IN CATHOLIC ORGANISATIONS IN UGANDA ‐ FROM HOLISTIC CARE TO ARV TREATMENT PROVISION 81 HOLISTIC HIV/AIDS CARE 81 CATHOLIC ORGANISATIONS AND HEALTH INSTITUTIONS AS ARV PROVIDERS 97 CONCLUSION: HOLISTIC CARE AND ARV TREATMENT 105 6. COUNSELLING, POSITIVE LIVING AND ‘THE RULES’ OF ARV TREATMENT 107 INTRODUCTION 107 COUNSELLING METHODOLOGY AND PRACTICE 108 LIVING POSITIVELY WITH HIV/AIDS 117 SELF­RESPONSIBLE CLIENTS – CORE CONCERNS 127 FOLLOWING THE RULES OF ARV TREATMENT AND POSITIVE LIVING 139 CHAPTER CONCLUSION 148 7. NEGOTIATING HOLISTIC CARE IN THE CONTEXT OF NEO­LIBERAL DEVELOPMENT RATIONALITIES AND ARV TREATMENT SCALE­UP 149 INTRODUCTION 149 DEVELOPMENTS IN HOLISTIC CARE INTERVENTIONS IN KCCC 149 DEBATING DISCONTINUATION OF FOOD SUPPORT 155 FROM PASSIVE RECIPIENTS TO ACTIVE, RESPONSIBLE THERAPEUTIC CITIZENS 163 PRAYING TO GOD AND BEGGING FOR MERCY 172 CHAPTER CONCLUSION 177 8. HOME VISITING AND THE AMBASSADORS OF POSITIVE LIVING 179 INTRODUCTION 179 HOME VISITING IN KAMWOKYA CHRISTIAN CARING COMMUNITY 181 THE HOME­BASED CARE PROGRAMME COORDINATED BY EDIOFE HEALTH CENTRE 195 THE AMBASSADORS OF POSITIVE LIVING AT WORK 203 CHAPTER CONCLUSION 213 9. BEING AND BECOMING A CLIENT 215 INTRODUCTION 215 BECOMING A CLIENT 216 BEING A CLIENT – NEGOTIATING THE RULES IN EVERYDAY LIVES 226 CHAPTER CONCLUSION 250 10. CONCLUSION 253 APPENDICES 259 APPENDIX 1: OVERVIEW OF THE THREE CATHOLIC ORGANISATIONS 259 APPENDIX 2: OVERVIEW OF RESEARCH ACTIVITIES 262 APPENDIX 3: PROFILING QUESTIONNAIRE FOR ORGANISATIONS 264 APPENDIX 4: EXAMPLES OF INTERVIEW GUIDES 266 APPENDIX 5: EXAMPLE OF FOCUS GROUP DISCUSSION MANUSCRIPT 273 APPENDIX 6: QUESTIONNAIRE FOR PROFILING THE KCCC COMMUNITY HEALTH WORKERS 276 BIBLIOGRAPHY 277 ENGLISH SUMMARY 300 DANISH SUMMARY 302 i Map of Uganda ii Map of Kampala district From: Uganda Districts Information Handbook – Expanded Edition 2007-2008. Fountain Publishers, Kampala. iii Map of Arua district From: Uganda Districts Information Handbook – Expanded Edition 2007-2008. Fountain Publishers, Kampala. iv 1. Introduction This dissertation is a study of three Catholic organisations in Uganda involved in providing ‘treatment, care and support’ to people living with HIV/AIDS. One is an NGO operating under the auspices of Kampala Archdiocese. The two others operate under Arua Diocese (in the Northwestern corner of Uganda), and include an AIDS clinic in a Catholic hospital and a home-based care programme coordinated by a Catholic health centre.
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