“People have a story to tell”: Using Human-Centered Design to Transform Caregiver Experiences into Psychosocial Support Development for Sickle Cell Disease in Kenya
Sonali Patel, Duke Undergraduate’26 My project examines how caregivers of children with sickle cell disease in Kenya experience psychosocial burden, and how these experiences can inform the development of culturally-grounded interventions. For my thesis, I’m particularly interested in the ways that the participatory methods of the Human Centered Design (HCD) allowed caregivers to prioritize their needs to brainstorm intervention ideas, across multiple stages of the broader study including focus group discussions and HCD workshops. Findings show that caregivers conceptualize burden as deeply social and relational, extending beyond the clinic into household and community-level contexts, while financial challenges remain an important underlying factor. I also had the opportunity to interview two mothers of children with SCD alongside our fieldwork last summer and am in the process of creating a documentary sharing…
