Consent understanding and willingness to participate in research among adolescents and young adults living with HIV

Background: There are limited data regarding informed consent understanding and research decision-making among youth in sub-Saharan Africa. Methods: Adolescents and young adults living with HIV (AYLHIV) aged 10–24 years and adult caregivers of 10–17-year-old AYLHIV were enrolled. Consent understanding was assessed using the Informed Consent Comprehension Assessment (ICCA) tool. Willingness to participate was tested in four research scenarios (HIV-specific cross-sectional, non-HIV-specific cross-sectional, HIV-specific longitudinal, and HIV-specific interventional). ICCA scores, willingness to participate, and preference for deferred-larger vs. earlier-smaller reward were compared between AYLHIV and caregivers (CG). Results: Among 104 AYLHIV (median age 17), and 98 CG (median age 41), comprehension scores were lower among AYLHIV than CG (median 15.0 vs. 16.0, P = 0.027) with no difference between CG and AYLHIV >18 years old; video vs. written consent information elicited similar scores. Youth were more likely to prefer deferred-larger reward than CG. Youth were less willing to participate in studies involving blood collection, long-acting ART interventions, or sexual behavior surveys, than in general surveys or text-messaging interventions. For several scenarios CG were more willing for youth participation than youth themselves were. Contributing to science and helping future individuals were leading motivations for research participation and were similar for youth and CG. Conclusions: Adaptation of informed consent for youth <18 years old may improve comprehension. Higher desirability of deferred gratification among youth than caregivers was surprising and may reflect financial needs among caregivers. Mismatched interest in youth participation between youth and caregivers suggests that youth guidance on research design could enhance participation.