Supporting self-management for people recently diagnosed with HIV: A social network lens

Background : This research explores the structure, function and transformation of personal networks that support HIV self-management from the perspective of people recently diagnosed with HIV. The findings provide insight into the factors influencing network change and the roles of family, friends, HIV positive peers and healthcare providers (HCP) within personal support networks. Methods : In-depth interviews with 35 recently diagnosed (<5 years) people living with HIV (PLHIV) in Queensland were conducted to explore their social networks and social support needs. Additional network mapping was conducted with 10 of the participants. Thematic analysis and social network diagrams were used to explore personal support network structure and evolution following diagnosis. Results : PLHIV drew on personal support networks in a range of ways as they journeyed from diagnosis toward self-management. Key elements shaping the development of supportive networks post diagnosis included: participants’ interactions with their HIV positive peers, perceptions of clinical services and willingness to disclose HIV diagnosis. Peers were vital for solidarity and information following diagnosis and those with similar age, location or interests and who were perceived to be living well with HIV became key long-term supports. Participants used existing associations, online platforms and community organisations to link with peers. Family, friends and a range of HCP were also important supports following diagnosis, but for some participants, stigma experienced using clinical services was a barrier to including HCP as part of longer-term support networks. For those not connected with peers and unwilling or unable to discuss HIV with friends and family, HCP remained vital long-term supports. Conclusion : HCP, researchers and policymakers must recognise the benefits of diverse personal networks in supporting self-management for PLHIV and potentially improving health outcomes. Facilitating recently diagnosed PLHIV to develop strong and sustainable personal support networks, including linkage with peers, is vital for self-management.