iPrevent: Engaging youth as long-acting HIV prevention product co-researchers in Cape Town, South Africa

Abstract

South African youth are one of the highest risk groups, globally, for HIV acquisition. Identifying prevention methods that will be acceptable and used consistently is an urgent priority. Engaging youth as co-designers is a targeted strategy to achieve the goal of developing prevention products that meet youth’s needs. The iPrevent study engaged male and female youth, aged 18–24 years, in Cape Town, South Africa, to co-design critical aspects of the research project aimed at understanding youth preferences for long-acting pre-exposure prophylaxis (PrEP). An established advisory board of young men who have sex with men, women who have sex with men and men-who-have-sex-with-men, as well as a purposively selected youth cohort were involved in film-making, survey design and interpretation of study results. Convening youth as co-designers had several impacts on iPrevent’s approach and outputs. Youth input informed the use of local actors in the study’s educational video, creating a “real-world” community setting that meaningfully situated the content. Their participation led to the successful development of survey language and images to explain scientific concepts in terms that would resonate (e.g. chili peppers to express product-associated pain). Lastly, their insight reviewing results led to clarifications around misinterpretations of risk perception and confirmed youth’s desires for products that fit into their goals around family, future happiness and education. The engagement of youth through creative, interactive activities contributed to adaptations of the study design, research implementation and understanding of results. This was important for connecting with young end-users and translating study findings for product developers in a way that reflected the context of their lives.