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The HI V O pen Call on I nformed C onsent and E thics in Research (VOICE) for Adolescents and Young Adults: A Digital Crowdsourcing Open Call in Low- and Middle-Income Countries.

作者信息

Day Suzanne, Tahlil Kadija M, Shah Sonam J, Fidelak Lauren, Wilson Erin C, Shah Seema K, Nwaozuru Ucheoma, Chima Kelechi, Obiezu-Umeh Chisom, Chikwari Chido Dziva, Mwaturura Tinashe, Phiri Nomsa, Babatunde Abdulhammed Opeyemi, Gbajabiamila Titilola, Rennie Stuart, Iwelunmor Juliet, Ezechi Oliver, Tucker Joseph D

机构信息

From the Department of Medicine, Division of Infectious Diseases.

Department of Epidemiology.

出版信息

Sex Transm Dis. 2024 May 1;51(5):359-366. doi: 10.1097/OLQ.0000000000001949. Epub 2024 Feb 10.


DOI:10.1097/OLQ.0000000000001949
PMID:38346417
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11018461/
Abstract

BACKGROUND: Many adolescents and young adults (AYAs; 10-24 years old) are excluded from HIV research because of social, ethical, and legal challenges with informed consent, resulting in limited AYA-focused data. We use a participatory approach to identify strategies for improving AYA consent processes in HIV research in low- and middle-income countries (LMICs). METHODS: We conducted a digital crowdsourcing open call for ideas to improve AYA consent to HIV research in LMICs. Crowdsourcing involves engaging a group of people in problem-solving, then sharing emergent solutions. Submissions were evaluated by 3 independent judges using predefined criteria, with exceptional strategies receiving prizes. Demographic data were collected, and textual data were qualitatively analyzed for emergent themes in barriers and facilitators for improving AYA consent in HIV research, guided by a socioecological model. RESULTS: We received 110 strategies total; 65 were eligible for evaluation, 25 of which were identified as finalists. Fifty-eight participants from 10 LMICs submitted the 65 eligible submissions, of which 30 (52%) were 18 to 24 years old. Thematic analysis identified 10 barriers to AYA consent, including HIV stigma, limited education, and legal/regulatory barriers. Strategies for improving AYA consent processes revealed 7 potential facilitators: enhancing AYA engagement in research, involving parents/guardians, improving education/awareness, improving institutional practices/policy, making research participation more AYA-friendly, enhancing engagement of other key communities of interest, and empowering AYA. CONCLUSIONS: Diverse communities of interest in LMICs developed compelling strategies to enhance informed consent that may improve AYA inclusion in HIV research. These data will be used to develop practical guidance on improving AYA consent processes.

摘要

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引用本文的文献

[1]
HIV interventions across the care continuum for adolescents in high-burden countries: a systematic review and meta-analysis.

EClinicalMedicine. 2024-11-28

本文引用的文献

[1]
Accelerating adolescent HIV research in low-income and middle-income countries: evidence from a research consortium.

AIDS. 2021-12-1

[2]
Ethical considerations for involving adolescents in biomedical HIV prevention research.

BMC Med Ethics. 2021-9-23

[3]
Soliciting parental consent among adolescent minor mothers: A barrier in adolescent HIV research?

S Afr Med J. 2021-5-31

[4]
Youth engagement in HIV prevention intervention research in sub-Saharan Africa: a scoping review.

J Int AIDS Soc. 2021-2

[5]
Adolescent participation in HIV research: consortium experience in low and middle-income countries and scoping review.

Lancet HIV. 2020-12

[6]
Adolescents and young people at the centre: global perspectives and approaches to transform HIV testing, treatment and care.

J Int AIDS Soc. 2020-9

[7]
Adolescent Barriers to HIV Prevention Research: Are Parental Consent Requirements the Biggest Obstacle?

J Adolesc Health. 2020-10

[8]
Who should decide about children's and adolescents' participation in health research? The views of children and adults in rural Kenya.

BMC Med Ethics. 2019-6-14

[9]
Crowdsourcing in medical research: concepts and applications.

PeerJ. 2019-4-12

[10]
World Health Organization Guidance on Ethical Considerations in Planning and Reviewing Research Studies on Sexual and Reproductive Health in Adolescents.

J Adolesc Health. 2019-4

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