Contrasting Comprehension of HIV Research by Adolescents, Young Adults, and Caregivers in Western Kenya: A Cross-sectional Analysis

Jessica Dyer; Seema K. Shah; Kawango Agot; Kate Wilson; Risper Bosire; Jacinta Badia; Irene Inwani; Kristin Beima-Sofie; Barbra A. Richardson; Grace John-Stewart; Pamela Kohler

doi:10.1097/JNC.0000000000000336

Contrasting Comprehension of HIV Research by Adolescents, Young Adults, and Caregivers in Western Kenya: A Cross-sectional Analysis

Jessica Dyer^*, Seema K. Shah, Kawango Agot, Kate Wilson, Risper Bosire, Jacinta Badia, Irene Inwani, Kristin Beima-Sofie, Barbra A. Richardson, Grace John-Stewart, Pamela Kohler

^*Corresponding author for this work

Pediatrics

Research output: Contribution to journal › Article › peer-review

5 Scopus citations

Abstract

Adolescent participation in research is critical to inform interventions that improve outcomes for this group. Adolescents and young adults living with HIV often present to care without caregivers, yet caregiver permission is typically required for those younger than 18 years. We evaluated whether understanding of key consent information differed between adolescents (n = 1,393) and caregiver adults (n = 169). Compared with caregivers, adolescents aged 10-14 years showed significantly lower understanding, whereas understanding for older adults living with HIV did not differ significantly from caregivers. Risks were the least understood consent information for all age groups. Our findings suggest that for low-risk research, waiving caregiver permission requirements will not compromise the ethical need to ensure understanding of research before enrollment and may allow adolescents greater access to potential research benefits.

Original language	English (US)
Pages (from-to)	542-549
Number of pages	8
Journal	Journal of the Association of Nurses in AIDS Care
Volume	33
Issue number	5
DOIs	https://doi.org/10.1097/JNC.0000000000000336
State	Published - Sep 1 2022

Funding

The authors thank the adolescents, young adults, and caregivers who generously provided their time to participate in this research and the study staff for their thoughtful work to ensure understanding of the informed consent process. We acknowledge the support of Impact Research & Development Organization, University of Washington Center for Global Health Nursing and the Global Center for Integrated Health of Women, Adolescents, and Children, and the Kisumu and Homa Bay County Ministries of Health. This research was sponsored by the National Institute of Child Health & Human Development (UG3 HD096906) and Prevention and Treatment through a Comprehensive Care Continuum for HIV-affected Adolescents in Resource Constrained Settings (PATC³H).

Keywords

HIV
adolescent
consent
ethics
research participation

ASJC Scopus subject areas

Advanced and Specialized Nursing

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1097/JNC.0000000000000336

Cite this

Dyer, J., Shah, S. K., Agot, K., Wilson, K., Bosire, R., Badia, J., Inwani, I., Beima-Sofie, K., Richardson, B. A., John-Stewart, G., & Kohler, P. (2022). Contrasting Comprehension of HIV Research by Adolescents, Young Adults, and Caregivers in Western Kenya: A Cross-sectional Analysis. Journal of the Association of Nurses in AIDS Care, 33(5), 542-549. https://doi.org/10.1097/JNC.0000000000000336

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Dyer, J, Shah, SK, Agot, K, Wilson, K, Bosire, R, Badia, J, Inwani, I, Beima-Sofie, K, Richardson, BA, John-Stewart, G & Kohler, P 2022, 'Contrasting Comprehension of HIV Research by Adolescents, Young Adults, and Caregivers in Western Kenya: A Cross-sectional Analysis', Journal of the Association of Nurses in AIDS Care, vol. 33, no. 5, pp. 542-549. https://doi.org/10.1097/JNC.0000000000000336

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AU - Shah, Seema K.

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AU - Bosire, Risper

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AU - Inwani, Irene

AU - Beima-Sofie, Kristin

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AU - Kohler, Pamela

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AB - Adolescent participation in research is critical to inform interventions that improve outcomes for this group. Adolescents and young adults living with HIV often present to care without caregivers, yet caregiver permission is typically required for those younger than 18 years. We evaluated whether understanding of key consent information differed between adolescents (n = 1,393) and caregiver adults (n = 169). Compared with caregivers, adolescents aged 10-14 years showed significantly lower understanding, whereas understanding for older adults living with HIV did not differ significantly from caregivers. Risks were the least understood consent information for all age groups. Our findings suggest that for low-risk research, waiving caregiver permission requirements will not compromise the ethical need to ensure understanding of research before enrollment and may allow adolescents greater access to potential research benefits.

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Contrasting Comprehension of HIV Research by Adolescents, Young Adults, and Caregivers in Western Kenya: A Cross-sectional Analysis

Abstract

Funding

Keywords

ASJC Scopus subject areas

UN SDGs

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