“I’m Still Here”: a 10 year follow-up of women's experiences living with HIV

Abstract

Women with HIV have increased longevity and the potential for decreasing mother to child transmission with the use of antiretroviral therapy. Since the beginning of the AIDS epidemic in 1980, the disease has evolved from an acute condition to a chronic one. How have women long-term survivors transitioned from a “death sentence” to living with HIV/AIDS as a chronic illness? In this study, we investigate the reproductive, mothering, and living experiences of HIV positive women 10 years after their participation in a study of their reproductive decisions. The sample was taken from two groups of women living with HIV (n = 60), one in Oakland, California (n = 30) and one in Rochester, New York (n = 30). Both groups participated in the initial study (1995–2001). The inclusion criteria for this study are women with HIV who are living and well enough to participate in a face-to-face interview. Of the original 60 women, 52 women are living. Two and one half years into this 4-year study, the author has completed interviews with 25 women from Oakland (n = 10) and Rochester (n = 15). An unexpected life with HIV challenges participants to live a viable life different from their pre-diagnosed life. It involves a life of defining normalcy in everyday experiences and building a legacy of a life worth living. Participants’ issues and concerns of living with HIV/AIDS identify what kinds of cultural notions, and medical and social interventions support or undermine women's reproductive, mothering, and long-term living with HIV/AIDS.

Citation

Barnes, D.B. (2008), "“I’m Still Here”: a 10 year follow-up of women's experiences living with HIV", Jacobs Kronenfeld, J. (Ed.) Care for Major Health Problems and Population Health Concerns: Impacts on Patients, Providers and Policy (Research in the Sociology of Health Care, Vol. 26), Emerald Group Publishing Limited, Leeds, pp. 123-138. https://doi.org/10.1016/S0275-4959(08)26006-0