Adolescents living with HIV (ALHIV, ages 10-19) are retained in care at low rates, resulting in poor clinical outcomes. We investigated barriers and facilitators to retention experienced by perinatally infected ALHIV in western Kenya. This qualitative study purposefully sampled hospitalized ALHIV (engaged and not currently engaged in care), ALHIV engaged in outpatient care, and caregivers of ALHIV. In total, 116 ALHIV and caregivers participated in interviews or focus group discussions. Challenges related to the effects of both stigma and poverty at multiple socio-ecological levels pose the greatest barriers to adolescent retention in HIV care. Adolescents with positive relationships with family, clinic, and/or peers with the resources to support their care are facilitated to overcome these barriers. Conversely, adolescents with few of these supports due to orphanhood, caregiver illness, severe poverty, family conflicts, negative relationships with healthcare workers, or isolation, have the greatest challenges staying in care, and maybe at risk of disengagement. Experiences of trauma emerged from narratives of disengagement, and contribute to isolation, mental health challenges, and difficulties engaging in care. Retention of the most vulnerable adolescents will require interventions to mitigate the impacts of stigma, poverty, mental health issues, and limited social support on HIV care engagement.
Keywords: Adolescents living with HIV; antiretroviral therapy; continuity of patient care; lost to follow-up; sub-Saharan Africa.