“It's like you're living a lie”: A model of decision-making among youth with perinatal HIV during the transition to adulthood

Issues:  The surviving cohort of youth with perinatal HIV (YPHIV) now face the complex developmental challenges of adolescence, including issues of sexuality, romantic relationships, and psychosocial adjustment, for which their HIV status is particularly salient.

Description:  Through an analysis of five qualitative studies conducted by the authors and a review of extant literature, we constructed a model of YPHIV decision-making about relationships, sexuality, transition to adult healthcare, medication adherence, disclosure, and childbearing, with the intention of better equipping healthcare professionals to support YPHIV.

Lessons Learned:  The desire to be “normal” emerged as a significant motivator for active pursual of normative experiences (e.g. sexual behavior) and/or for avoidance of HIV-related behavioral requirements (e.g. disclosure, taking medications). For example, YPHIV newly responsible for taking medication often describe wanting to be healthy, but avoid taking medication because it serves as a “daily reminder” of HIV. This desire for “normalcy” appears to supersede the influence of HIV on decision-making for many YPHIV in the realms of health, relationships, and sexuality.

Recommendations:  Avoidance of HIV-related behavioral requirements in favor of “normalcy” has clear, potentially dangerous individual and public health consequences. Researchers, policymakers, and healthcare professionals alike must attend to the influence of an intense desire for so-called “normalcy” among YPHIV decision-making. For example, if enacting mandatory disclosure laws, policymakers should provide evidence-based, practical guidelines for facilitating patient compliance. HIV care provision should focus on facilitating decision-making that protects YPHIV and others’ health and well-being, while acknowledging the developmental pull toward a normative adolescent experience.