Retaining Versus Engaging Youth in HIV Care: Perspectives From a Qualitative Study among Youth Living With HIV and Their Care Providers in Kenya and Uganda

Objective Adolescents (aged 15-18 years) and young adults (19-24 years) living with HIV (AYAH) face particular challenges with HIV care engagement and achieving viral suppression, especially in rural areas. We have few in-depth, qualitative understandings of engagement with HIV care from AYAH's perspectives. Methods We conducted semistructured, in-depth interviews with 113 AYAH during a 2-year multilevel intervention to improve viral suppression and health outcomes in rural Kenya and Uganda. Youth participants were purposively sampled and balanced for sex, life stage, and HIV care status to achieve heterogeneity of the characteristics thought to influence the pathways of action and challenges to sustaining HIV care retention. Thematic analysis explored how youth themselves perceived factors that facilitated or challenged clinic attendance and HIV care retention, with the aim of uncovering any distinctions they made within these categories. Results Findings revealed a youth-defined concept of HIV care that includes intrinsic social components such as familial support, examples of living positively, a sense of maturing as part of a community, and respectful providers. Youth implicitly distinguished between simply keeping appointments (“retention in care”) and caring about oneself with a shared commitment to health in conjunction with their family and providers (“engagement in care”). Conclusion We argue for differentiating “retention in care” and ”engagement in care” along lines similar to distinctions between disease (biomedical definition), illness (personal experience), and sickness (social dimension).