‘You are still a human being, you still have needs, you still have wants’: a qualitative exploration of patients’ experiences and views of HIV support

Background The importance of patient involvement in service redesign is gaining increasing recognition, particularly for chronic conditions. This study explored the experience, views and needs of people living with HIV to identify areas for improvement and service development.
Methods Face-to-face, semi-structured interviews were conducted with people living with HIV being treated in two clinics in Grampian, Scotland. The topic guide was developed, based on a proposed care pathway, which emphasized support systems. Thematic analysis was undertaken.
Results A total of 14 people living with HIV participated, with time since diagnosis ranging from <1 to >15 years. Most were males, white British and were men who had sex with men. Interviewees highlighted the need for different types of support throughout different stages of the HIV journey, including timely provision of information, post-diagnosis follow-up support, peer support, family support, and support regarding employment, benefits and housing. Many interviewees expressed a preference for support to be provided by people with knowledge or experience of HIV but had mixed feelings towards group support. Interviewees reported concerns with confidentiality and potential stigmatization.
Conclusions Support services should be tailored to reflect changing needs throughout the HIV journey with particular emphasis on maximizing confidentiality whilst minimizing stigma.