Participants’ perspectives on improving retention in HIV care after hospitalization: A post-study qualitative investigation of the MAPPS study

Few interventions have been shown to improve retention in HIV care. We recently completed a randomized, controlled trial of a peer mentoring intervention, which failed to increase retention in care or HIV suppression. We sought to gain insight into this negative result and elicit suggestions for future interventions. We conducted semi-structured one-on-one interviews with a sub-sample of participants and all available interventionists after completion of the primary study. Interviews were coded by two researchers and thematically analyzed. Participants in the intervention arm (N = 16) reported good rapport with and benefit from peer mentoring and found the mentors helpful in facilitating the transition from hospital to out-patient clinic. Control arm participants (N = 9) reported similar emotional and social support benefits from the health educators. In both arms, ongoing challenges including completing paperwork, securing transportation, and rescheduling missed appointments were cited, along with internalized stigma and lack of will to seek care, despite the mentors’ best efforts. Suggested improvements to the intervention included: more frequent contact with interventionists; additional support for mental health problems; and targeting overall health rather than a more selective focus on HIV. Mentors and health educators agreed with the participant-reported barriers and added that some participants were too sick to meaningfully participate in the intervention, while others appeared unwilling to engage with the interventionists in a meaningful way. Mentoring was highly acceptable and felt to be impactful, however it was not sufficient to overcome structural barriers or stigma and low motivation in some participants. The attention control intervention may have had an unintended positive impact. Future interventions should focus on broad aspects of health and well-being.