The information world of gay men living with HIV

Despite continued high rates of HIV infection in the gay community, comparatively little is known about how seropositive gay men inform their health over time. In particular, few efforts have been made to understand the meaning that health information carries for these individuals in everyday life, or the relationship such information has to their experience of sexual orientation. This qualitative study examines the practices (i.e., the socially established ways) by which gay men living with HIV seek, use, and share health information in the years following diagnosis. Single, in-home meetings were conducted using a purposive sample of 24 self-identified gay men living in the North of England, all of whom had known about their seropositive status for a minimum of two years. The methods employed were ethnographic (narrative interviews, fieldnotes, health questionnaires, home mapping, and photographs), while data analysis was undertaken from an interpretive interactionist perspective, which searches for meaning in those transformational life events when personal concerns become public knowledge. Three central findings emerged. First, the participants‘ efforts to inform themselves post-diagnosis about HIV and its treatment built on existing stocks of knowledge already developed as part of their long-term experience of being gay. Second, although the men sought and used different types of health information on a regular basis, they did so to the same end, that of minimising their use of it over time. Third, the men‘s choices about whether to share personal health information with others were reflected in the structure and content of their information world. Taken together, these findings revealed the extent to which the participants‘ information activities were embedded in, and influenced by, the social, spatial, and temporal context of their everyday lives. The study also identified how information science needs to develop approaches that better capture the long view of being informed.