Online Program

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

Tuesday, November 3, 2015

Jamie Albright, BA, Department of Psychology, University of Virginia, Charlottesville, VA
Cynthia Fair, LCSW, DrPH, Human Service Studies and Public Health Studies, Elon University, Elon, NC
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.

Learning Areas:

Planning of health education strategies, interventions, and programs
Systems thinking models (conceptual and theoretical models), applications related to public health

Learning Objectives:
Explain the decisions of YPHIV in young adulthood using a behavioral model. Discuss ways in which healthcare professionals can support YPHIV in making healthy decisions in light of their unique developmental challenges.

Keyword(s): Behavioral Research, Adolescents

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have been the co-principle investigator on multiple studies focused on adolescents with HIV or their care providers; specifically, documenting and analyzing their childbearing desires, relationship experiences, medication adherence, and perceptions of healthcare.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

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