Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Nov;8(11):e012966.
doi: 10.1136/bmjgh-2023-012966.

'I feel that I should decide on my own….': who should be involved in the decision-making process for adolescent involvement in HIV research?

Ferdinand C Mukumbang  1 , Kristen Beima-Sofie  2 , Jillian Neary  2 , Huangqianyu Li  3 , Kawango Agot  4 , Elise Healy  2 , Kate S Wilson  2 , Jacinta Badia  4 , James Kibugi  4 , Irene Inwani  5 , Nok Chhun  2 , Grace John-Stewart  2   5   6   7   8 , Pamela Kohler  2   9 , Seema K Shah  5   10
Affiliations

'I feel that I should decide on my own….': who should be involved in the decision-making process for adolescent involvement in HIV research?

Ferdinand C Mukumbang et al. BMJ Glob Health. 2023 Nov.

Abstract

Introduction: Efforts 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.

Methods: We 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.

Results: We 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.

Keywords: HIV; health services research; qualitative study.

PubMed Disclaimer

Conflict of interest statement

Competing interests: None declared.

Figures

Figure 1
Figure 1
A representation of the participant’s preferred person to participate in research participation decision-making.
Figure 2
Figure 2
Thematic web illustrating benefits of joint or individual decision-making for ALHs’ participation in HIV research. ALHs, adolescents and young adults living with HIV.
See this image and copyright information in PMC

References

    1. Myburgh D, Rabie H, Slogrove AL, et al. . Horizontal HIV transmission to children of HIV-uninfected mothers: a case series and review of the global literature. Int J Infect Dis 2020;98:315–20. 10.1016/j.ijid.2020.06.081 - DOI - PubMed
    1. Okonji EF, Wyk BV, Mukumbang FC. Two-year retention in care for adolescents on antiretroviral therapy in Ehlanzeni district, South Africa: a baseline cohort analysis. AIDS Care 2023;35:374–84. 10.1080/09540121.2022.2057409 - DOI - PubMed
    1. van Wyk B, Kriel E, Mukumbang F. Retention in care for adolescents who were newly initiated on antiretroviral therapy in the Cape Metropole in South Africa. South Afr J HIV Med 2020;21:1077. 10.4102/hivmed.v21i1.1077 - DOI - PMC - PubMed
    1. Van Wyk BE, Kriel E, Mukumbang F. Two-year viral load suppression among adolescents receiving antiretroviral therapy in the Cape Metropole, South Africa, 2013 - 2015: a retrospective cohort analysis. S Afr Med J 2020;110:1213–7. 10.7196/SAMJ.2020.v110i12.14509 - DOI - PubMed
    1. Mabaso M, Maseko G, Sewpaul R, et al. . Trends and correlates of HIV prevalence among adolescents in South Africa: evidence from the 2008, 2012 and 2017 South African national HIV prevalence, incidence and behaviour surveys. AIDS Res Ther 2021;18:97. 10.1186/s12981-021-00422-3 - DOI - PMC - PubMed

Publication types