“I created something new with something that had died”: Photovoice as a means of re-presentation among poor and racial/ethnic minority women living with HIV/AIDS

Introduction: Many women with HIV/AIDS (WLH/A) in the U.S. are living longer, but HIV/AIDS is still a stigmatized, lifelong illness. Accordingly, an HIV/AIDS diagnosis can diminish a woman's sense of identity and purpose. WLH/A may benefit from opportunities to redefine themselves and confront their own and other's uncertainties. We conducted a photovoice project with WLH/A that provided them an opportunity to explore themselves and their life experiences.

Methods: Photovoice is a community-based participatory process that utilizes photography to engage marginalized groups in research and change. We conducted five photovoice projects with 30 WLH/A from three U. S. cities. Participants photographed their life experiences; and attended three group discussions followed by a community exhibit of their photos. We explored the impact of the project through one-on-one follow-up interviews. We analyzed transcripts of group discussions and interviews for key themes using strategies of thematic and narrative analysis.

Results: Evidence of positive transformations were abundant in women's photos and narratives. Six key themes of change were most prominent, including visually expressed transitions from: sickness to health; denial to acceptance of life with HIV/AIDS; despondence to “full of life”; shame to pride in oneself; aimlessness to purposeful; and victim to survivor.

Conclusions: Photovoice can be an important way for disenfranchised WLH/A to make meaning out of their life experiences. The camera provided the tool for women to visually express and redefine themselves. The opportunity to re-present themselves through photos and share their transformations may have important implications for women's quality of life and well-being.