IFGH 2012: People Living with HIV in Orissa State, India Supporting Others Living with HIV

January 29, 2012

Authors:Cartmell E., Gahan B.

Author Affiliations: Concern Worldwide (Dublin), Concern India

Option 2– Lessons from the field; project and programme evaluations; and syntheses or analyses Presented as – Oral Presentation

Issues:

People living with HIV are best placed to tell stories of HIV as a challenge that goes beyond public health. As a part of the Alliance2015 EU funded HIV programme, thirteen people living with HIV (6 women and 7 men) were interviewed in order to understanding their realities and to give them the chance to have a say in the way HIV is tackled at a programme and policy level in Orissa State. Data was collected using qualitative interviews, observational techniques and relevant secondary data.

Findings:

Respondents, aged between 22-37 years, came from a range of socioeconomic backgrounds. Men were typically diagnosed after a prolonged illness, whereas for women their diagnosis often followed their husband’s positive test.
Analysis of the case histories revealed a number of commonalities: high level of fear of (and actual) discrimination by healthcare providers; perceived fear of discrimination on disclosure. In contrast, those whom disclosed HIV positive status, families and communities had been broadly supportive.

Lessons:

Educational advice given by people living with HIV consistently covered four areas: ART and adherence; livelihood options; nutrition; and HIV and AIDS knowledge. The financial burden of HIV was heavy, due primarily to the loss of livelihood owing to poor health and widowhood, and the cost of ART. The burden fell heaviest on those least able to cope: the extremely poor women living with HIV.“[Before] there was no tension in my life. Now there is a fear of what will happen to us. So much money goes on medicine and travel … Life is insecure.”

Recommendations:

  • Included people living with HIV in policy development to ensure effective targeting and implementation of programmes;
  • Empower people living with HIV to engage in dialogue with governments, NGOs and medical personnel; Address HIV stigma and discrimination in healthcare settings.

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