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TRANSCENDING GIPA Towards an Ubuntu framework for mainstreaming participation of South African people living with HIV (PLHIV) in social change communication for HIV prevention MUSARA LUBOMBO TRANSCENDING GIPA Towards an Ubuntu framework for mainstreaming participation of South African people living with HIV (PLHIV) in social change communication for HIV prevention MUSARA LUBOMBO (210545995) Research Protocol HSS/0338/012D Supervisor: Dr Lauren Dyll-Myklebust A thesis submitted to the Centre for Communication, Media and Society University of KwaZulu-Natal In fulfilment of the requirements for the degree Doctor of Philosophy 2015 DECLARATION This doctoral thesis, Transcending GIPA: Towards an Ubuntu framework for mainstreaming participation of South African people living with HIV (PLHIV) in social change communication for HIV prevention was done at the Centre for Communication, Media and Society, University of KwaZulu-Natal from February 2012 to November 2014 under the supervision of Dr Lauren Dyll- Myklebust. I declare that the thesis is my own unaided work, and has not been submitted before, for any degree or examination at any other University. All figures, tables and panels, unless specifically acknowledged as being sourced from other persons, are mine. Where use has been made of the work of others, it is duly acknowledged. Musara Lubombo Signature …………………………… Date …………………… Lauren Dyll-Myklebust Signature …………………………… Date …………………… i To Sis Ma’ B For being fearless For being an embodiment of Ubuntu For soldiering on Musara Lubombo ii ABSTRACT HIV/AIDS is a significant health, social, political and economic challenge whose devastating impact on development and subsequent threat to the human, national and global security is well documented. Early responses to the HIV epidemic are known to have dislocated people living with HIV (PLHIV) at the margins of society, crystallising them as patients who need treatment, care and support (Osborne, 2006). This thesis focuses on participation of PLHIV in social change communication for HIV prevention, an aspect that has only recently been acknowledged in the HIV response. It explores how South African PLHIV experience and perceive the framework guiding participation of PLHIV - the Greater involvement of people living with HIV/AIDS (GIPA) - which by virtue of it being a product of the Joint United Nations Programme on HIV/AIDS (UNAIDS) has become accepted as universal. The objective of the thesis derives from issues that arise from the dialogue between extant theory and local practice and thoughts about what constitute positive social change communication for HIV prevention and how such change can be achieved. To achieve this objective, thirteen AIDS Activists based in KwaZulu-Natal were interviewed to make sense not only of the ways in which they configure involvement of PLHIV in the HIV response but also to understand the philosophy that informs such configurations. The findings suggest that South African AIDS Activists predicate their involvement in the HIV response on visible participation, placing emphasis on serostatus disclosure as a signal for safer intentions meant to protect other people from HIV infection. They regard confidentiality of one’s serostatus as negating feasible gains that could be realised from the HIV response involving PLHIV. However, this configuration of participation is contrary to GIPA guidelines which, based on individual rights, provide for the involvement of PLHIV without necessarily disclosing their serostatus (UNAIDS, 2007). The study concludes that GIPA’s emphasis on individual rights atomises people and presents challenges for HIV prevention in local communities where cultural beliefs are such that individual health is inseparably bound to other people. It also considers the AIDS Activists’ configuration of participation as bearing hallmarks of Ubuntu, an African worldview which perceives humans as relational beings who have weighty duties towards each other (Mbiti, 1969; Metz, 2007a/b). The study, therefore, proposes an Ubuntu model for future design and implementation of social change communication for HIV prevention with South African PLHIV in a manner that can not only account for their worldview and cultural frames through which they make behavioural choices but can also allow for the creation of a conducive environment for their visible participation in social iii change communication for HIV prevention. That the model has been developed from the perspective of local people demonstrates the importance of regarding local realities and frameworks that members use to make sense of their lives as the basis upon which interventions must be formulated. Key words: Ubuntu model, social change communication for HIV prevention, GIPA, configuration of participation, PLHIV iv CONTENTS DECLARATION ............................................................................................................................................. i ABSTRACT .................................................................................................................................................... iii LIST OF TABLES ........................................................................................................................................ x LIST OF FIGURES..................................................................................................................................... xi LIST OF PANELS ...................................................................................................................................... xii LIST OF APPENDICES.......................................................................................................................... xiii ACRONYMS ................................................................................................................................................ xiv ACKNOWLEDGEMENTS ...................................................................................................................... xv INTRODUCTION ..................................................................................................................................... xviii Why this study? .............................................................................................................................. xix Research procedures and key findings ........................................................................... xxiv Organisation of work ............................................................................................................... xxviii Understanding the study in its proper context: A note on terminology........ xxx PART I ............................................................................................................................................................... 1 CONTINUED SEARCH FOR EFFECTIVE RESPONSES TO THE UNABATING HIV EPIDEMIC ........................................................................................................................................ 1 CHAPTER ONE ............................................................................................................................................ 2 LOCATING PEOPLE LIVING WITH HIV IN THE HIV/AIDS DISCOURSE ............. 2 Current situation regarding the HIV epidemic ................................................................ 2 HIV transmission risk behaviours of PLHIV...................................................................... 4 Voices from below: PLHIV challenging marginalisation ............................................. 6 v CHAPTER TWO .......................................................................................................................................... 14 THEORISING SOCIAL CHANGE COMMUNICATION FOR HIV PREVENTION . 14 A CULTURE-CENTERED APPROACH ..................................................................................... 14 Social change communication for HIV prevention ...................................................... 18 Dialogue as shared space for meaning making ............................................................. 20 Western moral reasoning: Kantian respect for the other ........................................ 27 African moral philosophy: Ubuntu ........................................................................................ 37 PART II ............................................................................................................................................................ 53 OVERVIEW OF THE GLOBAL RESPONSES TO THE HIV EPIDEMIC .................. 53 CHAPTER THREE .................................................................................................................................... 54 DISCURSIVE RESPONSES TO THE HIV EPIDEMIC AND THE DISLOCATION OF PEOPLE LIVING WITH HIV .................................................................................................... 54 The Western AIDS patient as a person with an undesirable difference .......... 56 The African HIV epidemic: Permissive sexuality? ........................................................ 62 Alternative viewpoint: HIV/AIDS denialism .................................................................... 69 HIV/AIDS-related stigma and discrimination ................................................................ 84 CHAPTER FOUR ....................................................................................................................................... 94 PRAGMATIC RESPONSES TO THE HIV EPIDEMIC: A SISYPHEAN TASK? ...... 94 The (dramaturgical) architecture of HIV epidemic: Whither Act 4? ................... 96 Modes and contexts of HIV transmission ...................................................................... 100 The bio-medical approach....................................................................................................... 106 The behavioural and social change approach ............................................................. 119 The structural approach .......................................................................................................... 127 vi CHAPTER FIVE ....................................................................................................................................... 134 GREATER INVOLVEMENT OF PEOPLE LIVING WITH HIV ..................................... 134 HIV transmission risk behaviours among PLHIV ...................................................... 136 Policy framework directing PLHIV participation ........................................................ 147 Social change interventions for HIV prevention ......................................................... 154 PART III ....................................................................................................................................................... 169 PARTICIPATION AS CONFIGURED BY SELECTED SOUTH AFRICAN PEOPLE LIVING WITH HIV ............................................................................................................................. 169 CHAPTER SIX .......................................................................................................................................... 170 METHODOLOGICAL FRAMEWORK ...................................................................................... 170 Philosophy of research .............................................................................................................. 171 Disciplinary and paradigmatic location of study ....................................................... 178 Selection of participants .......................................................................................................... 181 Data collection methods........................................................................................................... 185 Methods of analysis .................................................................................................................... 192 CHAPTER SEVEN ................................................................................................................................. 196 DISCONNECT BETWEEN GLOBAL THEORY AND LOCAL PRACTICE ............. 196 SOUTH AFRICAN PLHIV’S PARTICIPATION IN SOCIAL CHANGE COMMUNICATION FOR HIV PREVENTION ...................................................................... 196 Participation as an economic relationship with AIDS Service Organisations ................................................................................................................................................................ 199 Participation as service to humanity ................................................................................ 204 Expert service providers ........................................................................................................... 212 Audiences conferring on prevention and management of the virus ............... 217 vii Participation as disclosure ..................................................................................................... 223 Personal experiences as prods to disclosure ............................................................... 230 Perceptions about their participation .............................................................................. 235 CHAPTER EIGHT ................................................................................................................................... 241 SOUTH AFRICAN PEOPLE LIVING WITH HIV’S CONFIGURATION OF PARTICIPATION IN THE HIV RESPONSE........................................................................... 241 On (in)visible participation: The problem of non-disclosure............................... 242 Granting others an opportunity to make choices ..................................................... 251 Brother/sisterhood and sensitivity to the well-being of the other .................. 256 I am because we are? Responsibility to protect the the other ........................... 262 Flaking off the burden of secrecy ....................................................................................... 268 CHAPTER NINE ...................................................................................................................................... 276 BRIDGING THE CONCEPTUAL GAP ..................................................................................... 276 TOWARD AN UBUNTU FRAMEWORK FOR MAINSTREAMING PARTICIPATION OF PLHIV IN SOCIAL CHANGE COMMUNICATION FOR HIV PREVENTION 276 Ubuntu normative theory for African ethics ................................................................. 280 Tenets of Ubuntu normative theory ................................................................................... 289 Participation of PLHIV in the HIV response through Ubuntu ............................. 293 Individual motivation: Ubuntu as law of autonomous will ................................... 300 Creating a supportive environment for PLHIV: Ubuntu as the technology for sociability .......................................................................................................................................... 303 Caveat ................................................................................................................................................. 308 Limitations of the Ubuntu model ......................................................................................... 308 CHAPTER TEN ........................................................................................................................................ 312 viii

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