Assessment of cognitive capacity of adolescents and parents to provide informed consent in Rakai, Uganda

Nao Haba

Name: Nao Haba, MD
School: Mailman School of Public Health, Class of 2022
Mentors: John Santelli, MD, MPH, Philip Kreniske, PhD, Susie Hoffman, DrPH, Fred Nalugoda, PhD, MHSc, (Rakai Health Sciences Program)

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Adolescents tend to be excluded from research despite their significant risk of HIV infection. This is due in part to their status as a vulnerable population and to confusion around who should give consent for their participation in research. To provide evidence to address this bioethical challenge, our research aims to assess the cognitive capacity of early (10-14 years), middle (15-17 years) and late (18-19 years) adolescents and parents/guardians to provide informed consent. To assess cognitive capacity, we used the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR), which was adapted for adolescent research. We recruited adolescents and their parents/guardians in Rakai, Uganda. Participants were read a consent form and asked questions to assess their understanding. Interviews were recorded and translated to English. We refined the scoring guidelines and scored 78 interviews. Additionally, we conducted preliminary qualitative analysis of the 78 interviews. Through training, two scorers reached an intraclass correlation coefficient (ICC) for inter-rater reliability of 0.888 (95% Confidence Interval: 0.663-0.959). Qualitative analysis identified participants’ understanding of direct benefits and difficulty in understanding abstract ideas about risks and benefits. We found no noticeable differences on these features between adolescents and adults. This analysis also identified the complexity of adolescents’ decision-making processes. The preliminary results suggest that even the youngest adolescents have the capacity to provide informed consent. In next steps, we will analyze the MacCAT-CR scores among the different age groups of adolescents and among parents/guardians to inform or challenge current ethical practice on the inclusion of adolescents into research.