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FACING UP TO STIGMA AND FACING UP TO STIGMA AND DISCRIMINATIONDISCRIMINATION
PAM O’CONNOR
Centre for International Health
Curtin University, Perth, Western Australia
October, 2007
Supervisor: Dr Jaya Earnest
HIV-POSITIVE WOMAN, INDIAHIV-POSITIVE WOMAN, INDIA
http://www.unaids.org/bangkok2004/photos/C-2876_768.jpg
BACKGROUND : COUNTRY BACKGROUND : COUNTRY CONTEXTCONTEXT
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: BACKGROUND TO THE STUDY: COUNTRY CONTEXTCOUNTRY CONTEXT
SIGNIFICANCE OF THE SIGNIFICANCE OF THE STUDYSTUDY
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 HOSPITAL AND FOUNDING PATRONS: THE STUDY SITEPATRONS: THE STUDY SITE
The K J Somaiya Hospital opened in 1992. 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 THE CONCEPTUAL FRAMEWORK USED FOR THE STUDYUSED 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 CONTEXT OF THE STUDY & HIV TEAMTEAM
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 METHODS OF DATA COLLECTIONCOLLECTION
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 LIMITATIONS OF FIELD RESEARCHRESEARCH
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
22
45
0
5
10
15
20
25
30
35
40
45
Nu
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of
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Infected Affected
WOMEN INFECTED AND WOMEN INFECTED AND AFFECTEDAFFECTED
BY BY HIV/AIDSHIV/AIDS
INTERVIEWEE HOME AND INTERVIEWEE HOME AND KITCHENKITCHEN
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
RESULTSRESULTS::
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 RESULTS: A) HUMAN CAPACITYCAPACITY
Threats and StrengthsThreats and Strengths
Secrecy Caregiving Positive and negative experiences Future focus Emotions Education and awareness
COMMUNITY SCHOOLCOMMUNITY SCHOOL
RESULTS: B) SOCIAL RESULTS: B) SOCIAL ECOLOGYECOLOGY
Healthcare experiencesLack of power Disruption to familiesAbsence of family in the
future
RESULTS: C) CULTURE & RESULTS: C) CULTURE & VALUESVALUES
Religious faith and beliefsDecision makingReturn to natal families
RESULTS: RESULTS: D) ECONOMIC RESOURCES D) ECONOMIC RESOURCES
PovertyFinancesMalnutritionMedicines
SOMAIYA’S SEWING GROUP SOMAIYA’S SEWING GROUP INITIATIVEINITIATIVE
RESULTS: RESULTS: E) PHYSICAL RESOURCESE) PHYSICAL RESOURCES
Workload Illness of self Illness of other family
members
THE RESEARCH SITETHE RESEARCH SITE
Interpreter and Interpreter and community community
health workershealth workers
Pollution in MumbaiPollution in Mumbai
RESULTS: RESULTS: F) ENVIRONMENTAL F) ENVIRONMENTAL
RESOURCESRESOURCES
OvercrowdingSanitationDisease Pollution
CONCLUSIONSCONCLUSIONS
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
RECOMMENDATIONSRECOMMENDATIONS
WOMEN’S RESILIENCE AND WOMEN’S RESILIENCE AND DIGNITYDIGNITY
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: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.”