If You Think a Lot about Your HIV Status, You May End up Becoming a Failure. Experiences of Social Transition Milestones of Youth Living with HIV and Transitioning into Young Adulthood

Background: Young adulthood, typically defined as ages 18-29, is one of the most challenging transition periods. It is characterized by identity formation as well as a feeling of existing “in between” adolescence and adult-stages. Given that the transition to young adulthood occur in the context of fewer social controls, the ordering, timing, and tempo of these transitions can have long-term health consequences. Specifically, youth living with HIV (YLHIV) face multiple biological, psychiatric, behavioral, and contextual challenges that may impede their ability to successfully transition into adulthood. This stage is also associated with poor adherence to antiretroviral therapy, increased substance use, and health-risking behaviors. These early deficits and experiences may profoundly limit the ability of YLHIV to complete high school, find employment, have relationships, and function independently as they transition into young adulthood. However, studies exploring the social transition milestones of YLHIV who are also managing a chronic, transmittable, and stigmatizing illness, especially in low resource settings, are nonexistent. This study examines the perceived impact of living with HIV on the social transition milestones of YLHIV in Uganda.

Methods: We conducted semi-structured in-depth interviews, using a stratified purposive sample of 56 YLHIV (18-24 years), recruited as part of a larger randomized clinical trial, examining the longitudinal treatment and behavioral health outcomes for YLHIV. We selected youth who had transitioned through four or more milestones (leaving home, completing school, entering the workforce, forming a romantic partnership, and transitioning to parenthood). All interviews were conducted in Luganda local language, and audio recorded. Interviews were transcribed verbatim and translated to English. We used thematic analysis to analyze data.

Results: Out of the 56 youth, 14 had completed four or more transition milestones. Youth narratives focused on how living with HIV made it difficult to transition through milestones. Specifically, youth identified fear of unwanted HIV status disclosure, stigma and mockery from peers, poor health that made it difficult to understand what was being taught in school and rigid school schedules that made it difficult to adhere to medication, difficulty taking medication and keeping it safe in a workplace environment, resulting in job loss. Similarly, although most youth were not married, fear of unwanted status disclosure to romantic partners and inability to ensure confidentiality made it difficult to sustain relationships. While becoming a parent was appreciated as a milestone that brought joy and satisfaction, it also came with increased financial burden of taking care of one’s family. However, youth also mentioned encouragement and financial support from family members, their own interest and passion for school and work, and desire to live independently, as factors that enabled them to transition through some of these milestones.

Conclusion: Successfully accomplishing developmental tasks during young adulthood not only influences immediate functioning, but also lays the foundation for optimal functioning later in life. Findings point to the importance of identifying key predictors of positive transition among YLHIV, and developing appropriate interventions to promote healthy development to alter negative pathways from childhood and adolescence, and optimize successful transition to adulthood.