DIRA: Peer Navigation for Adolescents with Sickle Cell Disease

DIRA was designed with the community it is meant to serve rather than adapted from a program built elsewhere. Findings from the lab’s research on the psychosocial burden of sickle cell disease in western Kenya were returned to the three partner hospitals as the opening phase of a human-centered design process, so that the people the research described could interpret it and decide what should follow. In workshops at each site, 48 participants — adolescents and young adults living with the disease, caregivers, healthcare providers, teachers, faith leaders, and policymakers — worked through the findings themselves and generated intervention ideas at the individual, family, clinic, and community levels. Peer support drew the most interest, because adolescents wanted guidance from someone who understands the disease through lived experience.

Sessions move from understanding the condition and the feelings that accompany it, through coping with pain and difficult days, to identity beyond illness, family and social relationships, speaking up for oneself in medical settings, and planning for the future. Peer navigators provide structured, non-clinical support within a supervised model. The design is intended to benefit both groups, giving adolescents someone who understands the condition from the inside while navigators build leadership, communication, and mentoring skills of their own. The program is fully manualized, with navigator training and competency assessment, supervision procedures, fidelity tools, and referral guidance, and it has ethical approval for the peer navigator training phase. Feasibility testing is the next step.

DIRA is the first component of a multi-level model the team is building. Planned alongside it are a family component adapting Tuko Pamoja for families coping with sickle cell disease, and a clinic component equipping providers with mental health screening and referral pathways so that the wider service responds as well. A Community Advisory Group drawn from the workshop participants is carrying the work into prototyping and testing.

Ochieng, Y. A., Patel, S., Njuguna, C., Midiwo, N., Rono, W., Owino, L., Ayaye, E., Saina, C., Bonner, M., Njuguna, F., & Puffer, E. S. (2026). Dissemination as design: Participatory co-creation of psychosocial interventions for sickle cell care in Kenya. Journal of Participatory Research Methods, 7(2).