Self-management support beyond the clinic: Exploring social support networks of people recently diagnosed with HIV

Background :   Treatment advances have resulted in longer life expectancy for people living with HIV (PLHIV). With the evolution of HIV nursing roles from acute to chronic care models, greater emphasis is placed on assisting individuals to self-manage HIV. Social support is important to optimize HIV self-management, yet little is known of the social networks that support PLHIV as they transition from diagnosis, toward achieving viral suppression, and beyond to living well long-term.  Purpose :   This study examines PLHIV changing experiences of self-management support during the first five years following diagnosis. It highlights the structure and transformation of social support networks in this time, exploring their interface with HIV nursing care and self-management models. Methods : In-depth interviews with a convenience sample of 34 recently diagnosed (<5 years) PLHIV in Queensland, Australia were conducted. Additional network mapping was conducted with 10 of the participants. Case studies, network diagrams and thematic analysis were used to explore and identify changing support needs and networks. Conclusions : The social support networks of the participants (24-74 years), recruited from a variety of Queensland locations, are diverse, ranging from sparse connections through to close-knit groups comprised of family, friends, service providers and HIV-positive peers. Fear of disclosure was a common factor disrupting networks following diagnosis, creating challenges for sourcing and maintaining support. In some cases, nurses were pivotal in reducing these fears and assisting PLHIV to access support, including peer-linkages. Networks that helped PLHIV maintain stability and treat HIV were important on diagnosis. As time progressed, networks that allowed PLHIV a comfortable level of HIV visibility helped reduce internalised stigma, and were pivotal in helping PLHIV transition toward living well.  Implications :   For PLHIV, managing social networks to seek support is a vital component of HIV self-management. This research provides insight into network support beyond the clinical environment, contributing to a broader picture of HIV care. Uniquely positioned across the clinical and community support spectrum of HIV care, nurses are well-positioned to help PLHIV build strong and sustainable support networks. These networks promote self-management and improve quality of life for PLHIV, which are key priorities of contemporary HIV nursing care.