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. 2022 Sep-Oct;33(5):542-549.
doi: 10.1097/JNC.0000000000000336. Epub 2022 Jun 14.

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

Jessica Dyer  1 , 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

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.

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.

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References

    1. Afolabi M. O., Okebe J. U., Mcgrath N., Larson H. J., Bojang K., Chandramohan D. (2014). Informed consent comprehension in African research settings. Tropical Medicine & International Health: TM & IH, 19(6), 625–642. https://doi.org/10.1111/tmi.12288 - DOI
    1. Alexander A. B., Ott M. A., Lally M. A., Sniecinski K., Baker A., Zimet G. D. (2015). Adolescent decision making about participation in a hypothetical HIV vaccine trial. Vaccine, 33(11), 1331–1337. https://doi.org/10.1016/j.vaccine.2015.01.049 - DOI
    1. Day S., Kapogiannis B. G., Shah S. K., Wilson E. C., Ruel T. D., Conserve D. F., Strode A., Donenberg G. R., Kohler P., Slack C., Ezechi O., Tucker J. D. (2020). Adolescent participation in HIV research: consortium experience in low and middle-income countries and scoping review. The Lancet HIV, 7(12), e844–e852. https://doi.org/10.1016/s2352-3018(20)30269-1 - DOI
    1. Grootens-Wiegers P., Hein I. M., van den Broek J. M., de Vries M. C. (2017). Medical decision-making in children and adolescents: developmental and neuroscientific aspects. BMC Pediatrics, 17(1), 120. https://doi.org/10.1186/s12887-017-0869-x - DOI
    1. Hein I. M., Troost P. W., Lindeboom R., Benninga M. A., Zwaan C. M., Van Goudoever J. B., Lindauer R. J. L. (2014). Accuracy of the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) for measuring children's competence to consent to clinical research. JAMA Pediatrics, 168(12), 1147–1153. https://doi.org/10.1001/jamapediatrics.2014.1694 - DOI

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