Reflections on living with HIV over time: exploring the perspective of HIV-infected women over 50

Abstract

Objectives: Approximately 32.7% of people living with HIV/AIDS (PLWHA) in the USA are now over the age of 50. Women comprise a significant percentage of the US HIV epidemic and the percentage of women diagnosed with HIV continues to grow; however, little is known about women's experiences living and coping with HIV over time. The goal of this study was to explore the experiences of US women over 50 living with HIV to better understand how they make sense of their diagnosis and cope with their illness over time and during the aging process.

Method: Nineteen women (mean age = 56.79, SD = 4.63) referred from Boston-area organizations and hospitals completed one-time, in-depth individual interviews, out of which 47% of the participants were identified as Black/African Americans, and 37% as White. The average time since diagnosis was 16.32 years (SD = 5.70). Inclusion criteria included: (1) female sex, (2) aged 50 or older, (3) HIV diagnosis, and (4) English speaking. Transcribed interviews were analyzed using a grounded theory approach and NVivo 9 software.

Results: Findings are described across the following themes: (1) experiences at diagnosis, (2) uncertainty of disease course, (3) acceptance, and (4) living ‘well’ with HIV. Participants appeared to be well adjusted to their HIV diagnosis and described a progression to acceptance and survivorship; they identified strategies to ‘live well’ in the context of HIV. For some, health-related uncertainty about the future remained. These findings were organized into a model of coping with HIV.

Conclusion: Themes and issues identified by this study may help guide interventions across the lifespan for women with HIV.

Keywords:

• HIV/AIDS
• women
• aging
• adjustment
• coping

Acknowledgements

The authors wish to thank the participants in this study for so generously sharing their experiences.

Additional information

Funding

Dr Psaros’ time was supported by the Harvard University Center for AIDS Research (CFAR), an NIH funded program (P30 AI060354) which is supported by the following NIH Co-Funding and Participating Institutes and Centers: NIAID, NCI, NICHD, NHLBI, NIDA, NIMH, NIA, NCCAM, FIC, and OAR, and K23 MH096651.