Adherence Self-Management and the Influence of Contextual Factors Among Emerging Adults With Human Immunodeficiency Virus

BACKGROUND: Maintaining adherence to antiretroviral therapy (ART) is a significant challenge for human immunodeficiency virus (HIV)-infected racial and ethnic minority adolescents and young adults (youth). Given the consequences of suboptimal ART adherence, there is a pressing need for an expanded understanding of adherence behavior in this cohort. OBJECTIVES: As part of an exploratory sequential, mixed-methods study, we used qualitative inquiry to explore adherence information, motivation, and behavioral skills among HIV-infected racial and ethnic minority youth. Our secondary aim was to gain an understanding of the contextual factors surrounding adherence behavior. METHODS: The information-motivation-behavioral skills model (IMB model) was applied to identify the conceptual determinants of adherence behavior in our target population, along with attention to emergent themes. In-depth, individual, semistructured interviews, including open-ended questions with probes, were conducted with a convenience sample of HIV-infected racial and ethnic minority youth (ages 16-29 years), receiving ART and with evidence of virologic failure (i.e., detectable HIV viral load). New participants were interviewed until information redundancy was reached. Qualitative interviews were digitally recorded, transcribed verbatim, and analyzed using Atlas.ti (v8). Directed content analysis was performed to generate categories and broad themes. Coding was initially conceptually driven (IMB model) and shifted to a data-driven approach, allowing for the discovery of key contextual factors that influence adherence behavior in this population. Methodological rigor was ensured by member checks, an audit trail, thick descriptive data, and triangulation of data sources. RESULTS: Twenty racial and ethnic minority participants (mean age = 24.3 years, 55.0% male) completed interviews. We found adherence information was understood in relation to HIV biomarkers; adherence motivation and behavioral skills were influenced by stigma and social context. We identified five primary themes regarding ART self-management: (a) emerging adulthood with a chronic illness, (b) stigma and disclosure concerns, (c) support systems and support deficits, (d) mental and behavioral health risks and challenges, and (e) mode of HIV transmission and perceptions of power and control. DISCUSSION: Key constructs of the IMB model were applicable to participating HIV-infected youth yet did not fully explain the essence of adherence behavior. As such, we recommend expansion of current adherence models and frameworks to include known contextual factors associated with ART self-management among HIV-infected racial and ethnic minority youth.