ArticleBMJ global health2023
'I feel that I should decide on my own….': who should be involved in the decision-making process for adolescent involvement in HIV research?
Article in BMJ global health, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
What it found
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Who cites it
5 citing papers in PubMed, 5 citations in OpenAlex.
- Application of the RE-AIM framework to evaluate a stepped care intervention for adolescents and youth living with HIV in Kenya: a mixed methods approach.Implementation science communications · 2026Article
- Intentions and attitudes of caregivers towards enrolment of their children and adolescents living with HIV into remission trials involving analytic treatment interruption.Journal of the International AIDS Society · 2026Article
- HIV Care Through Their Eyes: Navigating HIV Services and ART Adherence Among Adolescents and Their Caregivers in Lusaka, Zambia.AIDS research and treatment · 2026Article
- Competence to Consent and Willingness to Participate in Behavioral Trials Among a Mixed HIV Serostatus Sample of Young Gay and Bisexual Men Who Use Stimulants: A Mixed-Methods Study.Substance use & misuse · 2026Article
- Article
Corrections and comments
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Authors and funding
14 authors at 3 institutions in 2 countries.
Funding
Abstract
introductionEfforts to improve health outcomes among adolescents and young adults living with HIV (ALHs) are hampered by limited adolescent engagement in HIV-related research. We sought to understand the views of adolescents, caregivers and healthcare workers (HCWs) about who should make decisions regarding ALHs' research participation.
methodsWe conducted focus group discussions (FGDs) and in-depth interviews (IDIs) with ALHs (aged 14-24 years), caregivers of ALHs and HCWs from six HIV care clinics in Western Kenya. We used semi-structured guides to explore ALHs' involvement in research decisions. Transcripts were analysed using thematic analysis; perspectives were triangulated between groups.
resultsWe conducted 24 FGDs and 44 IDIs: 12 FGDs with ALHs, 12 with caregivers, and 44 IDIs with HCWs, involving 216 participants. HCWs often suggested that HIV research decision-making should involve caregivers and ALHs deciding together. In contrast, ALHs and parents generally thought decisions should be made individually, whether by HCWs/research teams (although this is likely ethically problematic), adolescents or caregivers. Caregiver and ALH preferences depended on ALHs' age, with younger ALHs requiring more support. A few caregivers felt that ALHs should consult with the research team/HCWs due to their greater knowledge of clinical care. ALHs emphasised that they should independently decide because they thought they had the right to do so and the capacity to consent. Poor communication and parental non-disclosure of HIV status influenced ALHs' views to exclude caregivers from decision-making. Regarding influences on research decision-making, ALHs were more willing to participate based on perceived contribution to science and less interested in participating in studies with potential risks, including loss of confidentiality. DISCUSSION: While research teams and HCWs felt that adolescents and caregivers should jointly make research decisions, ALHs and caregivers generally felt individuals should make decisions. As ALHs sometimes find caregiver support lacking, improving family dynamics might enhance research engagement.
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