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Jan 28 Full Draft Edited Alternative Beliefs about HIV/AIDS: Re-examining Distrust among Young Adults in Cape Town, South Africa Clara Rubincam London School of Economics and Political Science A thesis submitted to the Department of Social Policy at the London School of Economics for the degree of Doctor of Philosophy, London, July 2013 Declaration of Authorship I certify that the thesis I have presented for examination for the MPhil/PhD degree of the London School of Economics and Political Science is solely my own work other than where I have clearly indicated that it is the work of others (in which case the extent of any work carried out jointly by me and any other person is clearly identified in it). The copyright of this thesis rests with the author. Quotation from it is permitted, provided that full acknowledgement is made. This thesis may not be reproduced without the prior written consent of the author. I warrant that this authorization does not, to the best of my belief, infringe the rights of any third party. I declare that my thesis consists of 83656 words. 2 Acknowledgements My first debt of gratitude goes to the men and women who took part in this study: participants of the CAPS study, respondents in the focus group discussions, and the peer educators from the Treatment Action Campaign. Without their gracious gifts of time and insights, this research would not have been possible. My research assistants, Thobani Ncapayi and Ncedeka Mbune, enabled me to gain a perspective that otherwise would have been difficult to access. Their expert facilitation of all focus groups and valuable insights into the research design and analysis were greatly appreciated. Thobani also assisted me in the interviews with TAC and I could not have asked for a more skilled, knowledgeable and good- humoured companion. At the TAC Khayelitsha office, special thanks to Amelia Mfiki and Mary-Jane Matsolo for their assistance and friendship. From the outset, my two supervisors, Professor Tony Barnett and Dr. Hakan Seckinelgin, have fully supported this research project, providing hours of feedback, suggestions, critique, and encouragement. I am grateful to have gained the benefit of their combined wisdom over the years. Thanks to Stephanie Nixon, Tim Allen and Laura Bogart for additional academic support. I am especially indebted to Nicoli Nattrass, who provided resources at the beginning of the project, stimulating debate and suggestions in the middle, and encouragement to the end. While in Cape Town, she and Jeremy Seekings welcomed us at their home. My two examiners, Dr. Jonny Steinberg and Professor Janet Seeley provided insightful suggestions and encouragement for this research. I gratefully acknowledge the University of KwaZulu-Natal, the University of Cape Town, the London School of Economics and Political Science, and the Canadian Institutes for Health Research for providing resources in support of this research. I was supported throughout this process in South Africa, London, and Canada by fellow researchers, friends, and family members. In particular, Caroline Kuo, Amy Norman, Brendan Maughan-Brown, Becky Maughan-Brown, Rebecca Hodes, Mike Rogan, Judith Fessehaie, Eduard Grebe, Rebecka Rosenquist, Andrew Spence, Eve Warburton, Jesse Gerstin, Jesse Grayman, Pam Wood, Jon Wood, Simon Collard- Wexler, Siobhan O’Neil, Verena Kroth, Thomas Aaby, Jenevieve Mannell, Bronwyn McLeod, Laura Collinson, Stephanie Nixon, Rochelle Burgess, Anna Rubincam, Liz Rubincam, Andrew Naysmith, Eleanor Rubincam, Levi Froese, Jo-Marie and David Naysmith, and Irvin and Catherine Rubincam. Lastly, I extend endless gratitude to my constant companion, my husband Scott Naysmith. 3 Abstract Alternative beliefs about HIV – such as the man-made origins of the virus or the secret existence of a cure - can undermine trust in, and engagement with HIV prevention and treatment initiatives. These effects make understanding such beliefs an important component of responding to HIV/AIDS in South Africa. Echoing Robins’ observation that the current era allows for “the possibility of critical reflection on the ways in which contestations over scientific truth unfold under particular historical conditions” (2009a), this thesis seeks to reconsider dominant explanations for alternative beliefs about HIV/AIDS in South Africa. Previous studies maintain that the experiences of apartheid, the transition to democracy, and the early years of the new government have had permanent implications for the public’s trust in biomedical claims. In this thesis I argue that in addition to these explanations, individuals express distrust about HIV science because certain aspects of these scientific explanations do not ‘add-up’, particularly when considered in light of their everyday observations and experiences. These disjunctures in information do not simply reflect a lack of HIV knowledge or rejection of scientific principles. Rather, in drawing on past and present experiences, individuals demonstrate their commitment to “street-level epistemologies of trust” (Hardin 1992), an informal manner of empirically engaging with science’s rationale. Employing the Public Understandings of Science (PUS) framework to analyze these beliefs, this study conceptualizes trust and mistrust of scientific and official claims about HIV along a spectrum. Study participants endorse a range of alternative beliefs and knowledge about HIV/AIDS. They cite experiential and observational reasons to justify why they trust some authority figures and not others. In their role as trusted sources of information about HIV, peer educators with the Treatment Action Campaign draw on various “rhetorics of persuasion” (Robins 2009b) in order to lend practical plausibility to their claims. Ultimately, this study argues that respondents’ distrust of HIV science should be seen less as a rejection of scientific principles and more as a form of skeptical engagement with certain aspects of these scientific claims. 4 Contents DECLARATION OF AUTHORSHIP ...................................................................................................... 2 ACKNOWLEDGEMENTS ........................................................................................................................ 3 ABSTRACT ................................................................................................................................................ 4 LIST OF ACRONYMS ............................................................................................................................... 7 FIGURES AND TABLES .......................................................................................................................... 8 CHAPTER ONE: INTRODUCTION ....................................................................................................... 9 HIV/AIDS IN SOUTH AFRICA ................................................................................................................................. 9 RESEARCH AIMS AND QUESTIONS ........................................................................................................................ 14 THESIS OUTLINE ..................................................................................................................................................... 16 CHAPTER 2: APPROACHES TO ALTERNATIVE BELIEFS ABOUT HIV/AIDS ....................... 19 SECTION 1: STUDYING ALTERNATIVE BELIEFS ................................................................................................ 19 SECTION 2: ALTERNATIVE BELIEFS ABOUT HIV/AIDS IN SOUTH AFRICA ................................................ 26 SECTION 3: EXPLANATIONS FOR ALTERNATIVE BELIEFS ................................................................................ 30 SECTION 4: PUBLIC UNDERSTANDINGS OF SCIENCE FRAMEWORK ............................................................... 37 CHAPTER 3: METHODOLOGY AND METHODS ............................................................................ 47 SECTION 1: RATIONALE FOR MIXED- AND MULTIPLE- METHODS ................................................................. 48 SECTION 2: RESEARCH SITES AND DURATION .................................................................................................. 52 SECTION 3: PARTICIPANT RECRUITMENT AND STUDY INSTRUMENTS ......................................................... 60 SECTION 4: DESCRIPTION OF RESEARCH PARTICIPANTS ................................................................................ 70 SECTION 5: ETHICAL AND PRACTICAL CONSIDERATIONS .............................................................................. 72 SECTION 6: LIMITATIONS OF THE METHODOLOGICAL APPROACH ................................................................ 76 SECTION 7: ANALYSIS, INTERPRETATION AND REPRESENTATION ................................................................ 80 CHAPTER 4: ALTERNATIVE BELIEFS ABOUT HIV/AIDS IN POST-APARTHEID CAPE TOWN ...................................................................................................................................................... 82 SECTION 1: RESULTS FROM THE CAPS SURVEY ............................................................................................... 83 SECTION 2: ALTERNATIVE BELIEFS ABOUT HIV/AIDS ................................................................................. 85 SECTION 3: ORIGINS OF HIV/AIDS ................................................................................................................... 89 SECTION 4: EXISTENCE OF A CURE
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