A qualitative assessment of retention in HIV care among adolescents and young adults (AYA) living with HIV in New York City

Retention in HIV care is a critical precursor to ending the epidemic yet remains suboptimal in the United States. Gaining an understanding of the challenges faced by adolescents and young adults (AYA) living with HIV is essential to improving retention in HIV care. This study explored the barriers and facilitators to retention in care among Black and Hispanic AYA living with HIV. Audio-recorded semi-structured interviews were conducted with 20 AYA living with HIV ages 16–29 years in New York City. Our methods entailed an inductive content analysis to explore key concepts, reconcile codes, and identify a theme, categories, and subcategories. Bronfenbrenner’s socioecological model evolved as an organizing framework around barriers and facilitators to retention in care at the individual, interpersonal, healthcare system, and structural level. Data analysis yielded one overarching theme—the influence of psychosocial factors on retention in HIV care. Psychological struggles, powerlessness, clinic-level characteristics, and socioeconomic struggles were barriers reported by participants. Self-responsibility, social support, patient-friendly healthcare services, and socioeconomic resources emerged as facilitators. Retention in HIV care among AYA living with HIV is a multifaceted and complex phenomenon that involves multiple systems. Strengthening patients, healthcare system, and community partnerships can help address some of the HIV-related health disparities.