"I have hope, but I'm worried": Perspectives on parenting adolescents and young adults living with perinatally-acquired HIV.

Abstract

Youth with perinatally-acquired HIV (PHIV) are living well into young adulthood. There has been extensive research on the social impacts of PHIV on adolescents and young adults (AYA). However, little research has examined their broader family system. This qualitative exploratory project examined the perspectives of caregivers raising AYA with PHIV. Eighteen caregivers who cared for adolescents and young adults with PHIV over the age of 14 completed semistructured audio-recorded interviews. Questions focused on salient aspects of adolescent development and parenting experiences over the course of their child's life. Transcripts were coded for emergent themes. Past and present caregiving experiences were consistently contextualized by the stigmatized nature of HIV. Daily concerns related to medication adherence and sexual behavior were common. Future-oriented expectations were marked by hope, as well as an acknowledgment of continued struggle. Negative experiences with the health care system underscore the need for ongoing education about HIV-related stigma. Findings suggest that caregivers, like other parents of typically developing youth, may need support addressing sexuality. Additionally, caregivers expressed concerns over the appropriate levels of supervision to offer their AYA as they assumed more responsibility for their own health. Collaboration among psychosocial and health care professionals to identify support strategies will benefit both caregivers and AYA living with PHIV. (PsycInfo Database Record (c) 2022 APA, all rights reserved).