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

Abstract

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.

Storyboarding HIV Infected Young People’s Adherence to Antiretroviral Therapy in Lower- to Upper Middle-Income Countries: A New-Materialist Qualitative Evidence Synthesis

“…One study could not be retrieved from the authors [ 85 ], and we excluded another 65 studies with reasons; 30 studies for wrong setting [ 86 , 87 , 88 , 89 , 90 , 91 , 92 , 93 , 94 , 95 , 96 , 97 , 98 , 99 , 100 , 101 , 102 , 103 , 104 , 105 , 106 , 107 , 108 , 109 , 110 , 111 , 112 , 113 , 114 , 115 ], 11 studies for the wrong phenomena of interest [ 29 , 48 , 55 , 116 , 117 , 118 , 119 , 120 , 121 ], 10 studies for the wrong patient population [ 117 , 122 , 123 , 124 , 125 , 126 , 127 , 128 , 129 , 130 ], 9 studies for wrong study designs [ 131 , 132 ,…”

Feasibility and Acceptability of the Adherence Connection Counseling, Education, and Support (ACCESS) Proof of Concept: A Peer-Led, Mobile Health (mHealth) Cognitive Behavioral Antiretroviral Therapy (ART) Adherence Intervention for HIV-Infected (HIV+) Adolescents and Young Adults (AYA)

“…An exploratory sequential mixed-methods design was used to develop and test the ACCESS peer-led, mHealth CBI. Our research methods and study protocol, and formative qualitative findings, have been published in the Journal of Medical Internet Research Protocols [ 39 ] and Nursing Research [ 40 ], respectively. CONSORT guidelines for pilot and feasibility studies [ 41 ] were used to describe relevant methods and results.…”

“…Preliminary qualitative findings were used to inform and refine the ACCESS intervention content and implementation [ 40 ]. In brief, a qualitative inquiry was conducted to explore adherence information, motivation, and behavioral skills (IMB Model) among HIV+ AYA who met ACCESS study eligibility criteria.…”

“…As reported by our team [ 40 ], adherence information was understood in relation to HIV biomarkers (i.e., HIV viral load and CD4-T-lymphocyte counts) and conceptualized as a “war” between “good people” (i.e., CD4-T-lymphocytes) and “bad people” (i.e., HIV virus) [ 40 ]. Adherence motivation and behavioral skills were influenced by perceived stigma and social context, as it is difficult to acquire social support and self-manage a “secret” disease [ 40 ].…”

Using a Web-Based App to Deliver Rehabilitation Strategies to Persons With Chronic Conditions: Development and Usability Study

“…Rehabilitation principles can be incorporated into self-management support for people with chronic conditions to optimize their physical function. Most chronic conditions and disabilities are long-standing, and it is often challenging to keep people with chronic conditions engaged in long-term self-management [ 7 ]. Technology could be one way to promote ongoing engagement with rehabilitation clinicians who support self-management because it has the potential to increase the accessibility and availability of rehabilitation services.…”