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

Jessica Dyer¹, Seema K Shah, Kawango Agot, Kate Wilson, Risper Bosire, Jacinta Badia, Irene Inwani, Kristin Beima-Sofie, Barbra A Richardson, Grace John-Stewart, Pamela Kohler

Affiliations

Affiliation

¹ Jessica Dyer, MPH, is a Research Scientist, Department of Child, Family, Population Health Nursing at the University of Washington, Seattle, Washington, USA. Seema K. Shah, JD, is an Associate Professor, Northwestern University Medical School/Bioethics Program at Lurie Children's Hospital, Chicago, Illinois, USA. Kawango Agot, PhD, is the Executive Director, Impact Research and Development Organization, Kisumu, Kenya. Kate Wilson, PhD, is a Research Scientist, Department of Global Health, University of Washington, Seattle, Washington, USA. Risper Bosire is a Research Monitor, Impact Research and Development Organization, Kisumu, Kenya. Jacinta Badia, MPH, is a Research Coordinator, Impact Research and Development Organization, Kisumu, Kenya. Irene Inwani, MD, MPH, is the Assistant Director, Kenyatta National Hospital, Nairobi, Kenya. Kristin Beima-Sofie, MPH, PhD, is an Acting Assistant Professor, Department of Global Health, University of Washington, Seattle, Washington, USA. Barbra A. Richardson, PhD, is a Research Professor, Department of Biostatistics, and an Adjunct Research Professor, Department of Global Health at the University of Washington School of Public Health and Community Medicine, Seattle, Washington, USA. Grace John-Stewart, MD, PhD, is a Professor, Global Health, Epidemiology, Medicine, and Pediatrics, University of Washington, Seattle, Washington, USA. Pamela Kohler, RN, MPH, PhD, holds a joint appointment in the Department of Child, Family, Population Health Nursing, University of Washington and the Department of Global Health, Seattle, Washington, USA.

PMID: 35767728
PMCID: PMC12617612
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 et al. J Assoc Nurses AIDS Care. 2022 Sep-Oct.

. 2022 Sep-Oct;33(5):542-549.

doi: 10.1097/JNC.0000000000000336. Epub 2022 Jun 14.

Authors

Jessica Dyer¹, Seema K Shah, Kawango Agot, Kate Wilson, Risper Bosire, Jacinta Badia, Irene Inwani, Kristin Beima-Sofie, Barbra A Richardson, Grace John-Stewart, Pamela Kohler

Affiliation

¹ Jessica Dyer, MPH, is a Research Scientist, Department of Child, Family, Population Health Nursing at the University of Washington, Seattle, Washington, USA. Seema K. Shah, JD, is an Associate Professor, Northwestern University Medical School/Bioethics Program at Lurie Children's Hospital, Chicago, Illinois, USA. Kawango Agot, PhD, is the Executive Director, Impact Research and Development Organization, Kisumu, Kenya. Kate Wilson, PhD, is a Research Scientist, Department of Global Health, University of Washington, Seattle, Washington, USA. Risper Bosire is a Research Monitor, Impact Research and Development Organization, Kisumu, Kenya. Jacinta Badia, MPH, is a Research Coordinator, Impact Research and Development Organization, Kisumu, Kenya. Irene Inwani, MD, MPH, is the Assistant Director, Kenyatta National Hospital, Nairobi, Kenya. Kristin Beima-Sofie, MPH, PhD, is an Acting Assistant Professor, Department of Global Health, University of Washington, Seattle, Washington, USA. Barbra A. Richardson, PhD, is a Research Professor, Department of Biostatistics, and an Adjunct Research Professor, Department of Global Health at the University of Washington School of Public Health and Community Medicine, Seattle, Washington, USA. Grace John-Stewart, MD, PhD, is a Professor, Global Health, Epidemiology, Medicine, and Pediatrics, University of Washington, Seattle, Washington, USA. Pamela Kohler, RN, MPH, PhD, holds a joint appointment in the Department of Child, Family, Population Health Nursing, University of Washington and the Department of Global Health, Seattle, Washington, USA.

PMID: 35767728
PMCID: PMC12617612
DOI: 10.1097/JNC.0000000000000336

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.

Copyright © 2022 Written work prepared by employees of the Federal Government as part of their official duties is, under the U.S. Copyright Act, a “work of the United States Government” for which copyright protection under Title 17 of the United States Code is not available. As such, copyright does not extend to the contributions of employees of the Federal Government.

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Conflict of interest statement

Disclosures

The authors report no real or perceived vested interests related to this article that could be construed as a conflict of interest.

References

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

Affiliation

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

Authors

Affiliation

Abstract

Conflict of interest statement

References

Publication types

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Grants and funding

LinkOut - more resources

Full Text Sources

Medical