Reframing Positive: Exploring determinants of engagement in HIV care through photovoice

BACKGROUND

Of the 1,448 Oklahomans diagnosed with HIV/AIDS between 2009-2013, only 57.8% are engaged in medical care.  A low-incidence state, Oklahoma communities may require different interventions to promote retention in care than other states with larger HIV incidence.  Persons living with HIV/AIDS can provide policy makers and program administrators with valuable insight into determinants of retention in care.

METHODS

Photovoice, a participatory research process that combines photographs with participant narratives to stimulate social action, was used to explore patient-perceived barriers and facilitators to healthy living with HIV.  Participants were recruited from an AIDS service organization in an urban Oklahoma community (n = 7).  After orientation to the process, participants took photos to capture their experiences. Participants then collaborated to create narratives for selected photos and to identify common themes.  

RESULTS

Participants identified negative experiences with the health care system, including provider discrimination and a lack of autonomy in their treatment decisions, stigma, and social isolation as barriers to health. Participants identified hope, social support, and specific service agencies as supportive of health.

CONCLUSION

Program administrators working to improve retention rates should consider the lived perspectives of HIV patients. Provider discrimination and authoritarian-style treatment may deter retention in care, while strategies to engage patients in treatment decisions in a stigma-free environment may promote retention in care.  Researchers and program administrators should consider incorporating chronic disease self-management or other patient-centered interventions as a component of retention in care efforts, while working with providers to correct misperceptions about HIV.