Seeking information about HIV/AIDS: a qualitative study of health literacy among people living with HIV/AIDS in a low prevalence context

People living with HIV/AIDS in rural and low HIV prevalence areas face a number of challenges including stigma, limited access to specialized medical care, lack of an HIV/AIDS specialist and fear which may interfere with their ability to find and use information to manage their health. With a large number of HIV cases located in non-metropolitan and rural areas in the US, more research is needed to better understand the health seeking behaviors of individuals living in this context. This study examined how 16 individuals living with HIV sought out information to meet their health needs. In qualitative semi-structured interviews, we explored participants' primary sources of information, types of information sought, and barriers to accessing information. The sample was comprised of people living with HIV/AIDS (PLWHA) who resided in a predominantly rural area with low HIV prevalence. The majority of participants relied on a combination of sources including their HIV/AIDS physician, the Internet, a Ryan-White caseworker and a staff member of a community-based support organization to meet their informational needs. Information sought focused primarily on drug regimens, drug side effects, or drug research. Participants shared barriers to accessing information including stigma, fear, concern about disclosure, and feelings of futility and anger. Findings point to a need to expand health literacy research and interventions to address broader social and structural barriers to health improvement for PLWHA, especially among those living in rural and low HIV prevalence areas.