Voices of Resilience: Stigma, Discrimination and Marginalisation of Indian Women Living with HIV/AIDS

Cover......Page 1
Voices of Resilience......Page 3
ISBN: 9789460914355 (hardback)......Page 4
DEDICATION......Page 5
TABLE OF CONTENTS......Page 7
ACKNOWLEDGEMENTS......Page 10
FOREWORD......Page 12
LIST OF TABLE AND BOXES......Page 14
LIST OF ABBREVIATIONS......Page 16
GLOSSARY OF INDIAN TERMS......Page 18
EXECUTIVE SUMMARY......Page 20
HIV/AIDS IN THE WORLD AND INDIA......Page 22
STIGMA AND DISCRIMINATION AND HIV/AIDS......Page 23
THE STUDY DESIGN AND METHODOLOGY......Page 24
THE CONCEPTUAL FRAMEWORK USED FOR THE STUDY......Page 25
The Somaiya Trust and the Home-based Care Programme......Page 26
Findings of the Research......Page 27
OUTLINE OF THE BOOK......Page 28
A Global Overview......Page 31
The World’s most Diverse Epidemic the Multiple Modes of HIV Transmission in Asia and its Impact on Women......Page 32
Safe Injecting Behaviour......Page 33
Education......Page 34
Medical Interventions......Page 35
THE CONTEXT OF HIV/AIDS IN INDIA......Page 36
Economy......Page 37
Education and Awareness of HIV/AIDS......Page 38
Widespread and Entrenched Gender Inequality......Page 39
Responses to HIV/AIDS in India......Page 40
Interventions Focusing on Children and Young People......Page 41
Workplace Interventions......Page 42
THE NATIONAL AIDS PREVENTION AND CONTROL POLICY......Page 43
Highlights of Initiatives and Achievements by the NACO......Page 45
International Contribution to HIV/AIDS in India......Page 47
THE MEGA CITY OF MUMBAI......Page 48
The Unique Place of Migrants in Mumbai......Page 49
The Sex Worker Industry in Mumbai......Page 50
SUMMARY......Page 51
Some Defintions of Stigma......Page 52
THE INFLUENCE OF GOFFMAN IN UNDERSTANDING STIGMA......Page 55
Instrumental and Symbolic Stigma......Page 56
Prejudice......Page 57
Discrimination......Page 58
STIGMA RELATED TO HIV/AIDS......Page 59
International Experiences of Stigma and Discrimination......Page 60
Stigma and Discrimination in the Context of HIV in India......Page 61
Gendered Dimensions of Stigma and Discrimination for IWLWHA......Page 62
Strategies to Overcome Stigma and Discrimination......Page 64
Mental Illness Approaches to Stigma......Page 65
SUMMARY......Page 66
INTRODUCTION TO THE CHAPTER......Page 68
The Vedic Period......Page 69
Jainism and Buddhism......Page 70
Manu’s Marriage Laws......Page 71
The Arrival in India of Muslim Women and Purdah......Page 72
The British Colonial Period......Page 73
Women’s Role in India’s Independence......Page 74
Women’s Progress in India......Page 75
The Rise of the Middle Class......Page 76
Struggles of Indian Women......Page 77
Woman’s Attitude towards Herself and Society......Page 78
Men’s Attitude towards Women......Page 79
The Caste System......Page 80
Family......Page 81
Structural Considerations......Page 82
International and National Law......Page 83
SUMMARY OF THE CHAPTER......Page 84
Aim and Objectives of the Study......Page 85
The Conceptual Framework......Page 86
The Research Site: The Positive Living Program for People Living with HIV/AID (PLWHA) now Renamed Somaiya Action for HIV/AIDS Su......Page 88
The Home-based Care Program......Page 89
SUMMARY......Page 90
THE RESEARCH STUDY......Page 91
In-depth Interviews......Page 92
Participant Observation......Page 93
Maintaining a Reflective Journal......Page 94
Use of the Framework Analysis to Analyse In-depth Interviews......Page 95
Ethical Considerations......Page 96
Rigour in the Study......Page 98
SUMMARY......Page 100
VULNERABILITY ISSUES......Page 101
Nutrition......Page 102
A LIFETIME OF STIGMA AND DISCRIMINATION......Page 103
Girl’s Childhood......Page 104
Child Marriage......Page 105
Lack of Decision-making and Power......Page 106
Highly Mobile Populations......Page 107
Violence towards Women – Sexual and Physical......Page 108
Pollution and Purification......Page 109
Beliefs regarding Sex......Page 110
The Role of Alternative Health Treatments......Page 111
Personal Effects......Page 112
Financial Burden......Page 113
The Vulnerability of Children......Page 114
Families and HIV/AIDS......Page 115
The Position for Widows......Page 116
SUMMARY OF THE CHAPTER......Page 117
INTRODUCTION......Page 118
Threat 1: Overcrowding......Page 119
Threat 3: Communicable Diseases......Page 120
Threat 1: Increase in Workload......Page 121
Threat 2: Illness – Self......Page 122
Threat 3: Illness of Family Members......Page 123
Strength 2: KJ Somaiya Hospital Medical Services......Page 124
ECONOMIC RESOURCES......Page 125
Threat 2: Finances......Page 126
Strength 1a: Strong Family Values......Page 127
Strength 1b: Resourcefulness of Women......Page 128
Threat 3: Malnutrition......Page 129
Threat 4: Lack of Medicines......Page 130
Threat 1: Lack of Religious Faith and Belief......Page 131
Strength 1: Firm Religious Faith......Page 132
Threat 2: Lack of Status of Women......Page 133
Threat 4: Gender Differences......Page 134
Strength 5: Strength and Resilience of Women......Page 135
Strength 7: Healthy Beliefs......Page 136
SUMMARY OF THE CHAPTER......Page 137
Social Ecology......Page 138
Threat 1b: Negative Experiences in Health Care......Page 139
Threat 3: Discrimination in the Community......Page 140
Strength 3: Non-discriminatory Practices at the KJ Somaiya Hospital......Page 142
Threat 4: Discrimination within the Family......Page 143
Strength 4: Positive Experiences in the Family......Page 144
Threat 5: Fear of Discrimination......Page 145
Threat 7: Lack of Support Secrecy – A Double Edged Sword......Page 147
Strength 7: Support from KJ Somaiya Hospital Services......Page 148
Threat 8: Lack of Awareness of the Community......Page 149
Strength 9a: Changing Roles Bring Growth......Page 150
Strength 9b: Support from within the Family......Page 151
Threat 11: Strain on Family......Page 152
Strength 11: Duty of Care......Page 153
SUMMARY OF THE CHAPTER......Page 154
HUMAN CAPACITY......Page 155
Threat 1: Lack of Knowledge and Information......Page 156
Strength 1a: Information about HIV/AIDS......Page 158
Strength 1b: Awareness of HIV/AIDS......Page 159
Strength 1c: Confidentiality......Page 160
Strength 1e: Knowledge of Transmission......Page 161
Threat 2a: Secrecy......Page 162
Threat 2b: Social Isolation......Page 164
Threat 3: Caregiving: A Burden?......Page 165
Strength 3b: Special Cases of Caring......Page 166
Threat 4: Emotional Reactions......Page 167
Strength 4a: Passivity or Acceptance?......Page 169
Threat 5: Unresolved Grief and Loneliness, Denial......Page 170
Strength 6: Active Coping......Page 171
Threat 6: Worries about Children......Page 172
Strength 6: Future Focus......Page 173
COMMENTARY......Page 175
Mode of Transmission......Page 176
Empowerment of Women......Page 177
SUMMARY OF THE CHAPTER......Page 178
INTRODUCTION TO THE CHAPTER......Page 179
My Arrival in the Mega City of Mumbai......Page 181
The HIV Cell (SAHAS) Team at the K J Somaiya Hospital, Sion, Mumbai......Page 183
Biting the Bullet and Undertaking Interviews......Page 185
A Harsh Reality......Page 187
My First Day in the Community......Page 188
Continuing the Research Journey......Page 190
Sharing Some Concerns and Achieving My Target......Page 191
Haldi Kum Kum Celebrations......Page 192
The Eve of My Departure, Going to the Movies and a Final Interview......Page 193
PART 2: USING NARRATIVES TO PRESENT WOMEN’S LIVES......Page 194
Narrative 1 - Kamla: Caring for her Brother’s Children and Educatingthe Community......Page 195
Interpretive Commentary......Page 196
Narrative 2 – Vandana: Triumph over Mental Health and Caringfor a Sick Husband......Page 197
Interpretative Commentary......Page 198
Interpretative Commentary......Page 199
Narrative 4 – Veena: Caring for the HIV Positive Sister......Page 200
Vignette 1. The Children of Mumbai......Page 201
Narrative 6: A Day in the Life of a Housewife in Mumbai......Page 203
SUMMARY OF THE CHAPTER......Page 205
STIGMA AND DISCRIMINATION......Page 207
Women’s Vulnerability to HIV/AIDS......Page 208
Strengthening Women......Page 210
Status of Women in India......Page 211
Better Healthcare for Indian Women......Page 212
Family Cohesion in Supporting Women......Page 213
Men’s Pivotal Role in Change......Page 214
Policy Makers to Address Women’s Issues......Page 215
Human Rights for PLWHA......Page 216
Girls Education and Awareness of HIV/AIDS......Page 217
The SAHAS Programme......Page 218
Message for Policy Makers......Page 219
CONCLUDING COMMENTS......Page 220
INTERVIEW PARTICIPANTS......Page 222
REFERENCES......Page 227
ABOUT THE AUTHORS......Page 242