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

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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.”