A Call for Youth Voice to Support Engagement in Care for 18- to 29-Year Olds Living with HIV in the US South.

ABSTRACT

Youth with HIV (YWH) face challenges in achieving viral suppression, particularly in the Southern United States, and welcome novel interventions responsive to community needs. The Theory of Planned Behavior (TPB) describes factors that influence behavior change, and the Positive Youth Development (PYD) supports youth-focused program design. We applied TPB and PYD to explore factors supporting care engagement and challenges for YWH in South Texas. We conducted 14 semi-structured interviews with YWH and 7 focus groups with 26 stakeholders informed by TPB, PYD, and themes from a youth advisory board (YAB). The research team and YAB reviewed emerging themes, and feedback-aided iterative revision of interview guides and codebook. Thematic analysis compared code families by respondent type, TPB, and PYD. All study methods were reviewed by the UT Health San Antonio and University Health Institutional Review Boards. Emerging themes associated with care engagement included varied reactions to HIV diagnosis from acceptance to fear/grief; financial, insurance, and mental health challenges; history of trauma; high self-efficacy; desire for independence; and desire for engagement with clinic staff from their age group. Stakeholders perceived YWH lifestyle, including partying and substance use, as care barriers. In contrast, YWH viewed "partying" as an unwelcome stereotype, and barriers to care included multiple jobs and family responsibilities. Two key themes captured in PYD but not in TPB were the importance of youth voice in program design and structural barriers to care (e.g., insurance, transportation). Based on these findings, we provide critical and relevant guidance for those seeking to design more effective youth-centered HIV care engagement interventions. By considering the perspectives of YWH in program design and incorporating the PYD framework, stakeholders can better align with YWHs' desire for representation and agency. Our findings provide important and relevant guidance for those seeking to design more effective HIV care engagement interventions for YWH.