UNIVERSITY OF KWAZULU-NATAL AN EXPLORATORY STUDY TOWARDS DISCLOSURE OF STATUS AND REDUCTION OF STIGMA FOR PEOPLE LIVING WITH HIV/AIDS IN A LOW INCOME COMMUNITY: THE DEVELOPMENT OF A COMMUNITY-BASED FRAMEWORK AYISHA RAZAK AN EXPLORATORY STUDY TOWARDS DISCLOSURE OF STATUS AND REDUCTION OF STIGMA FOR PEOPLE LIVING WITH HIV/AIDS IN A LOW INCOME COMMUNITY: THE DEVELOPMENT OF A COMMUNITY-BASED FRAMEWORK BY AYISHA RAZAK A THESIS SUBMITTED TO THE FACULTY OF HEALTH SCIENCES UNIVERSITY OF KWAZULU-NATAL (DURBAN) SOUTH AFRICA In fulfillment of the degree of DOCTOR OF PHILOSOPHY (NURSING) Supervised by PROFESSOR B. R. BHENGU AND PROFESSOR P. BRYSIEWICZ DECEMBER 2010 i DEDICATION This thesis is dedicated to my children, Shabnam, Gulshan and Mohammed Ishruth, my son-in-law, Ahmed Mahomed Cassoo and my adorable grandson, Talha for their love, encouragement and support through this journey. ii ACKNOWLEDGEMENTS I am most grateful to the Almighty Allah for giving me the inner strength, stamina and perseverance to complete this study. My sincere gratitude and appreciation goes to the following people and organizations: Professor Adejumo, my supervisor in the early stages of this project. Thank you for your guidance and supervision. Professor Busi Bhengu, my supervisor for her guidance, patience and encouragement throughout the study. You have been a very good role model to me. Professor Petra Brysiewicz, my co-supervisor for her guidance, patience, encouragement and especially the “hello there” that just boosted my spirits to continue and finally complete my study. PLWHA, who participated in the study? It was the most enriching experience in my life listening to your stories, sometimes very threatening but challenging. The Chairman, Bhambayi Reconstruction and Development Committee, for granting me permission to conduct the study with the community. The Department of Social Welfare and Population Development, Province of Kwazulu-Natal, for granting me permission to conduct the study in Bhambayi NIP Site. iii National Research Foundation (NRF)-Thuthuka Programme for funding my research study. Centre for Research Management and Development, Durban University of Technology (DUT) for financial sponsorship towards my research study. The Department of Postgraduate Development Studies at Durban University of Technology (DUT) for the Research Award. Sr. Adelaide Msomi the project coordinator of the Bhambayi Settlement Project for identifying the PLWHA. Vaneshree Govender, Centre for Research Management and Development, for her support to seek NRF funding. Vuyani Mayela from the library at DUT for his assistance in getting the articles and books requested for through inter-library loans promptly. Ahmed Mahomed Cassoo, for your computer skills in the drawing of the framework. Penny Orton and Clem Gambusche, for your expert inputs, guidance and advice at all times. My children, Shabnam, Gulshan and Mohammed Ishruth for their love, support, understanding and perseverance. iv DECLARATION I Ayisha Razak, declare that this thesis titled “An exploratory study towards disclosure of status and reduction of stigma for people living with HIV/AIDS in a low income community” is my original work and has not been submitted to any other university except the University of Kwazulu-Natal (Durban). The sources of information that I have used in this work have been acknowledged in a complete reference list. ----------------------- ------------------------ Student’s Signature Date --------------------------- ------------------------- Supervisor Date ---------------------------- -------------------------- Co-supervisor Date v ABSTRACT Introduction: Stigma associated with HIV/AIDS creates a barrier to prevention, care and treatment of HIV/AIDS. It further restricts PLWHA from learning about their status, disclosing their status, adopting safe behaviour and accessing services such as antiretroviral treatment. Disclosure of HIV status and a reduction in stigma may contribute to the decrease in new HIV cases. Purpose: The purpose of the study was to develop a community-based framework that would encourage people living with HIV/AIDS to disclose their HIV status and reduce the stigma associated with the disease. Method: This study used the action research method to explore the experiences of stigma and disclosure of HIV status and to develop a community based framework with PLWHA who encouraged disclosure and promoted the reduction of stigma in a community-based setting. The research setting was Bhambayi, an informal settlement in the district of Inanda. Non-probability purposive sampling was used. In-depth interviews with PLWHA that had disclosed their HIV status and focus group discussions with family members, adult children and community members were conducted. Findings: The data was analyzed manually and the following categories and subcategories emerged. The categories were experience of disclosure, stigmatizing reactions, lifestyle changes after disclosure and supports to reduce stigma. Some of the sub-categories were ‘opens out the illness’, gossiping and pointing fingers, discrimination against PLWHA by family and community, changes in relationships, community awareness and formation of support groups. The findings revealed that PLWHA that had disclosed their HIV status had changed their vi lifestyles. Recommendations were made on the need for nurses to develop community engagement projects and establish partnerships in order to reach out to communities regarding HIV/AIDS. Incorporate HIV/AIDS stigma and discrimination into the current nurses’ curriculum. The need for research is expressed on the evaluation of the framework and conducting similar research in larger communities. Conclusion: PLWHA who had disclosed their HIV-status shared their experience of being HIV- positive and encouraged other people to get tested. The community-based framework to facilitate disclosure and reduce stigma among PLWHA can be operationalised in other informal community-settings. vii TABLE OF CONTENTS Title page ………………………………………………………………………………………....i Dedication ………………………………………………………………………………………..ii Acknowledgements ……………………………………………………………………………...iii Declaration ……………………………………………………………………………………….v Abstract ………………………………………………………………………………………….vi Table of Contents ……………………………………………………………………………….viii List of Annexures ……………………………………………………………………………....xvi List of Tables …………………………………………………………………………………..xvii List of Figures …………………………………………………………………………………xviii List of Acronyms ……………………………………………………………………………….xix CHAPTER ONE: INTRODUCTION 1.1 Background to the study ……………….................................................................1 1.2 Problem Statement ..................................................................................................9 1.3 Purpose of Study ...................................................................................................13 1.4 Research Objectives ..............................................................................................13 1.5 Research Questions ...............................................................................................13 1.6 Significance of the Study ......................................................................................14 1.7 Operational Definitions .........................................................................................16 1.7.1 Disclosure of HIV status .......................................................................................16 1.7.2 Stigma ...................................................................................................................16 1.7.3 Community-based Approach ................................................................................16 1.8 Conclusion ............................................................................................................17 viii CHAPTER TWO: LITERATURE REVIEW 2.1 Introduction ...........................................................................................................18 2.2 Magnitude of HIV/AIDS .....................................................................................24 2.3 Disclosure of HIV status .......................................................................................26 2.3.1 Negative factors and the impact on disclosure......................................................29 2.3.2 Barriers to disclosure.............................................................................................30 2.3.3 Benefits of disclosure............................................................................................30 2.4 Stigma ...................................................................................................................31 2.5 Impact of stigma and HIV/AIDS ........................................................................35 2.5.1 Discrimination in HIV ..........................................................................................37 2.5.2 Stigma reduction regarding HIV ..........................................................................38 2.6 Support Systems ...................................................................................................39 2.7 Community Caregivers .........................................................................................41 2.8 Voluntary Counselling and Testing (VCT) ..........................................................41 2.9 Antiretroviral Treatment (ART) ...........................................................................44 2.10 Community