Barriers and pathways to re-engage people with HIV and substance use in medical care: a qualitative study among persons with lived experience.

backgroundRetention in medical care is essential for people with HIV (PWH) to successfully manage their illness and to reduce HIV transmissions in the United States (U.S.). A major factor that undermines retention in HIV care is co-occurring substance use disorders (SUD). Despite 11-48% of PWH in the U.S. having SUD, few evidence-based retention interventions for this population have been developed. Further, no studies sought guidance from previously out-of-care PWH and substance use histories about what might have helped or hindered their engagement in care when actively using substances. Broaching this topic among people with lived experience could provide novel insights into intervention approaches.

methodsParticipants were recruited from an HIV primary care clinic in the Northeastern United States. This qualitative study conducted individual in-depth interviews with n = 8 PWH and substance use histories focused on their experiences of being out of care and advice they might have to improve retention for PWH and SUD.

resultsThematic analysis revealed the significance of SUD-related stigma, both as a primary source of stigmatization fears, even when compared to HIV, as well as the enacted stigma associated with SUD in HIV treatment settings. SUD stigma undermined retention in HIV care. Participants highlighted that SUD must be addressed for HIV care engagement to improve.

conclusionsFindings indicate that novel pathways to address HIV and SUD must be developed. Approaches that reduce stigma risk, such as the "status neutral" approach to care, could support engagement in care for this population.