Towards an Ubuntu framework for mainstreaming participation of South African people living with HIV

393 Pages·2015·4 MB·English

by  Musara Lubombo (210545995)

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

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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
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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
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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
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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
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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
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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
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