FACING UP TO STIGMA AND DISCRIMINATION PAM O’CONNOR Centre for International Health Curtin University, Perth, Western Australia October, 2007 Supervisor: Dr Jaya Earnest

HIV-POSITIVE WOMAN, INDIA

BACKGROUND : COUNTRY CONTEXT  HIV/AIDS in India – 5.2 million (NACO,2006) rivals Africa. Caution: may only be 2.5 million (UNAIDS, 2007)  Prevalence in Mumbai – 2% of 15 million= 300,000  Married, heterosexual women are the most vulnerable currently (NACO, 2004).  Stigma and discrimination are major determinants of spread of infection and barriers to health care

BACKGROUND TO THE STUDY: COUNTRY CONTEXT

SIGNIFICANCE OF THE STUDY  To provide urgently needed data on stigma and discrimination of Indian women living with HIV/AIDS (IWLWHA)  To examine the role of discrimination in barriers in health care for IWLWHA  To explore views and perceptions of IWLWHA  To create a picture of how supportive environments can be set up  To suggest recommendations for future research

HOSPITAL AND FOUNDING PATRONS: THE STUDY SITE The K J Somaiya Hospital opened in It is a private, non-profit hospital near to slum areas. Its drabness was transformed when the Jain benefactors were celebrated and remembered for their generosity and humanity.

THE CONCEPTUAL FRAMEWORK USED FOR THE STUDY THE CONCEPTUAL FRAMEWORK USED FOR THE STUDY Source: The Psychosocial Working Group, 2003 Culture & Values Social EcologyHuman Capacity Physical Resources Environmental Resources Economic Resources

CONTEXT OF THE STUDY & HIV TEAM Now programs have been expanded to provide :: Street plays, sensitisation for all Hospital staff, income generation schemes and school for orphans and street children Somaiya Action for HIV/AIDS Support in India established 2003 Psychologist, social worker, three community health care-workers employed Originally provided pre and post test counselling, nutrition and support to the most vulnerable.

METHODS OF DATA COLLECTION  A. Documentary data collection  B. Home visits and observations  C. Interviews – target group  D. Focus group discussions  E. Use of a reflective journal  F. Cultural interpreter  G. Key informants

LIMITATIONS OF FIELD RESEARCH  Health of women to be interviewed  Time allocated for interviews prevented other activity – such as more focus groups  Dependence on HIV/AIDS team for interviews  Language and cultural barriers  Work culture in the Indian context  Lack of support and infrastructure  Financial costs

Number of women InfectedAffected WOMEN INFECTED AND AFFECTED BY HIV/AIDS BY HIV/AIDS

INTERVIEWEE HOME AND KITCHEN A typical dwelling of one room providing living for 3 women and a child. Conditions of overcrowding but always clean and tidy A traditional kitchen or part of the room showing collection of her steel cooking utensils

RESULTS :  Stigma and discrimination do exist in families, community and healthcare  Fear of discrimination is also rife and prevents help getting to these women

RESULTS: A) HUMAN CAPACITY Threats and Strengths  Secrecy  Caregiving  Positive and negative experiences  Future focus  Emotions  Education and awareness

COMMUNITY SCHOOL

RESULTS: B) SOCIAL ECOLOGY  Healthcare experiences  Lack of power  Disruption to families  Absence of family in the future

RESULTS: C) CULTURE & VALUES  Religious faith and beliefs  Decision making  Return to natal families

RESULTS: D) ECONOMIC RESOURCES  Poverty  Finances  Malnutrition  Medicines

SOMAIYA’S SEWING GROUP INITIATIVE

RESULTS: E) PHYSICAL RESOURCES  Workload  Illness of self  Illness of other family members

THE RESEARCH SITE Interpreter and community health workers Pollution in Mumbai

RESULTS: F) ENVIRONMENTAL RESOURCES  Overcrowding  Sanitation  Disease  Pollution

CONCLUSIONS CONCLUSIONS  HIV/AIDS stigma and discrimination exist in families, communities and healthcare  Fear of discrimination is evident  Women have little power in decisions  Women act as ‘shock absorbers’ for family  The women interviewed have resilience, strength and dignity  Men hold the key to change

Increase appropriate education and awareness Change of attitudes requires attention Support women Support programmes which are effective Community initiatives Support legal and media efforts Engage men in the process RECOMMENDATIONS

WOMEN’S RESILIENCE AND DIGNITY On Haldi KumKum Day, the women chose to dress up in their traditional ‘Maharashtrian Saris’ and jewellery Rangoli work on HIV/AIDS day

Kalavati’s words: “I will live as long as I can. Once I fall ill, critically ill, I will end my life. I don’t want to be a burden to anyone. This is a bad disease. People die because of it. Someone should find a solution for it quickly.”