Community-Based Approach to Designing an AIDS Program for HIV+ Mothers in India

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DESCRIPTION (provided by applicant): In India, an estimated 5.1 million people are living with HIV; of these HIV-infected individuals, 2.5 million are women of childbearing age, mostly parents. Antiretroviral treatment (ART) is slowly being initiated for eligible MLH and their children; however, the number of eligible MLH on ART is far below the overall target. For the overwhelming majority, HIV-related services for MLH are limited to the perinatal period. Unfortunately, the ongoing needs of MLH are not addressed. These needs relate to the challenges of living with HIV/AIDS, including dealing with side effects of ART, caring for their children while ill, dealing with decisions of disclosure of their HIV status, and coping with significant mental health stressors. Meeting these needs is critical as MLH in India have little autonomy or decision-making power, are illiterate, and few are employed. The goal of this two-year pilot study is to utilize qualitative methodology to gain an understanding of the perceived life challenges faced by MLH in India, and of optimal approaches to care for MLH, as informed by health care providers in the selected medical settings. Participants will also contribute to the development of a practical and culturally sensitive intervention program that will be appropriate for the physical and emotional needs of MLH and their children. The aims of this pilot study are to: 1) Explore via focus group interviews, the perceptions of 80 MLH in terms of strengths they manifest and challenges they face in dealing with HIV/AIDS, including being maintained on ART, parenting while ill, dealing with disclosure decisions, and promoting their mental health; 2) Describe factors that facilitate or prevent MLH from successfully seeking, obtaining, or maintaining care, including ART, for themselves and their children; 3) Enable MLH to describe strategies that health care providers can employ to support MLH in optimizing their health and well-being and that of their children; 4) Determine the format MLH would like to receive the intervention program; and 5) Describe barriers and facilitators reported by the health care providers and their medical director in delivering such services to MLH and their children. Lay Language: This research is relevant as we hope to learn from HIV-infected mothers in India how to design a program to help them live with their illness more optimally. These findings will lead to future funding to actually develop and test a newly designed program.