TY - JOUR
T1 - Contrasting Comprehension of HIV Research by Adolescents, Young Adults, and Caregivers in Western Kenya
T2 - A Cross-sectional Analysis
AU - Dyer, Jessica
AU - Shah, Seema K.
AU - Agot, Kawango
AU - Wilson, Kate
AU - Bosire, Risper
AU - Badia, Jacinta
AU - Inwani, Irene
AU - Beima-Sofie, Kristin
AU - Richardson, Barbra A.
AU - John-Stewart, Grace
AU - Kohler, Pamela
N1 - Funding Information:
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.
Funding Information:
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).
Publisher Copyright:
© 2022 Elsevier USA. All rights reserved.
PY - 2022/9/1
Y1 - 2022/9/1
N2 - 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.
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.
KW - adolescent
KW - consent
KW - ethics
KW - HIV
KW - research participation
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U2 - 10.1097/JNC.0000000000000336
DO - 10.1097/JNC.0000000000000336
M3 - Article
C2 - 35767728
AN - SCOPUS:85137099529
VL - 33
SP - 542
EP - 549
JO - Journal of the Association of Nurses in AIDS Care
JF - Journal of the Association of Nurses in AIDS Care
SN - 1055-3290
IS - 5
ER -
