BACKGROUND: Maintaining adherence to antiretroviral therapy is a significant challenge for HIV-infected racial and ethnic minority adolescents and young adults (youth). Given the consequences of suboptimal antiretroviral therapy 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 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 receiving antiretroviral therapy 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 with directed content analysis to generate categories and broad themes. Coding was initially conceptually driven 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 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 antiretroviral therapy self-management: (1) emerging adulthood with a chronic illness; (2) stigma and disclosure concerns; (3) support systems and support deficits; (4) mental and behavioral health risks and challenges; and (5) mode of HIV transmission and perceptions of power and control.
DISCUSSION: Key constructs of the information-motivation-behavioral 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 antiretroviral therapy self-management among HIV-infected racial and ethnic minority youth.
Adherence self-management and the influence of contextual factors among emerging adults with human immunodeficiency virus
Nursing Research, 69 (3), 197-209. doi: 10.1097/NNR.0000000000000422. PMCID: PMC7286659.