Understanding HIV care delays in the US South and the role of the social-level in HIV care engagement/retention: a qualitative study

INTRODUCTION: In a significant geographical shift in the distribution of HIV infection, the US South - comprising 17 states - now has the greatest number of adults and adolescents with HIV (PLHIV) in the nation. More than 60% of PLHIV are not in HIV care in Alabama and Mississippi, contrasted with a national figure of 25%. Poorer HIV outcomes raise concerns about HIV-related inequities for southern PLHIV, which warrant further study. This qualitative study sought to understand experiences of low-income PLHIV on the AIDS Drug Assistance Program in engagement and retention in continuous HIV care in two sites in Alabama. METHODS: The study was designed using grounded theory. Semi-structured interviews with 25 PLHIV explored experiences with care linkage, reported factors and behaviors affecting engagement/retention in continuous HIV care, including socio-economic factors. To triangulate sources, 25 additional interviews were conducted with health and social service providers from the same clinics and AIDS Service Organizations where clients obtained services. Across the narratives, we used the HIV care continuum to map where care delays and drop out occurred. Using open coding, constant comparison and iterative data collection and analysis, we constructed a conceptual model illustrating how participants described their path to HIV care engagement and retention. RESULTS: Most respondents reported delayed HIV care, describing concentric factors: psychological distress, fear, lack of information, substance use, incarceration, lack of food, transport and housing. Stark health system drop out occurred immediately after receipt of HIV test results, with ART initiation generally occurring when individuals became ill. Findings highlight these enablers to care: Alabama's 'social infrastructure'; 'twinning' medical with social services, 'social enablers' who actively link PLHIV to care; and 'enabling spaces' that break down PLHIV isolation, facilitating HIV care linkage/retention. CONCLUSIONS: Ryan White-funded programs, together with housing, food and psychological support were pre-conditions for participants' entry and retention in HIV care. The path to achieving continuous HIV care for individuals at risk of lack of entry or delayed HIV care requires robust social-level responses, like in Alabama, that address physical and mental health of clients and directly engage the particular social and economic contexts and vulnerabilities of southern PLHIV.