“…like because you are a grownup, you do not need help”: Experiences of Transition from Pediatric to Adult Care among Youth with Perinatal HIV Infection, Their Caregivers, and Health Care Providers in the Dominican Republic

Abstract

With the introduction of combination antiretroviral therapy (ART) worldwide, youth with perinatal HIV infection are increasingly surviving childhood and transitioning to adult care. Although a normal life span is anticipated posttransition, successful transition to adult HIV care has proven difficult, with worse outcomes posttransition than in pediatric and adult care. This study is a qualitative analysis of data from 4 focus groups of pre- and posttransition patients, caregivers, and healthcare providers in the Dominican Republic at an institution that provides comprehensive treatment including ART for HIV-infected persons of all ages. All groups discussed the problems and challenges that patients, caregivers, and providers experience while living the transition process and beyond. Five major themes emerged: the trauma of transition itself, ART adherence, experience and impact of stigma, social supports and barriers, and recommendations for improving outcomes. Participants’ insights offered approaches for a versatile structured transition process.