WIHS Women Respond: The Participants' Perspective

Since 1994, 4346 (3232 (74%) HIV infected and 1114 (26%) HIV uninfected) women have enrolled and participated in the Women’s Interagency HIV Study, a multi site NIH funded cohort study investigating disease progression in women.  The participants in WIHS reflect the demographics of women living with HIV throughout the U.S.; the majority are poor, and African American or latina, with almost 2/3 having finished high school, 2/3 reporting lifetime intimate partner violence and depressive symptoms at baseline.   For over 20 years, each study site has supported a local community advisory board and sponsored 2 women to participate in the national advisory board.  The advisory boards provide on-going community, science, psycho-social and political input to the national WIHS agenda.  Over the course of the study the advisory boards initiated research projects (body changes after antiretroviral medications, menopause, aging, sexual functioning, psychosocial stresses), gave input into study design, piloted instruments, and actively participated on working group and executive committee conference calls and annual meetings.  Two Chicago WIHS participants will share their experience as women living with HIV involved in research.  They will describe their reactions to the recurrent visits (over 41visits), research staff interactions, sharing of intimate information, repetitive questions, sharing narratives, and seeing other women die during the study. They will suggest respectful approaches to participatory research for women with HIV and respond to the results related to coping strategies, gender roles and parenting presented during the session.