Co-designing a support strategy for caregivers to encourage early engagement with health services during the first year following their child’s diagnosis of sickle cell disease

Objective To co-design a support strategy for caregivers during the first year following their child’s sickle cell disease (SCD) diagnosis to encourage early engagement with health services. Methods Principles of Experience-based Co-Design supported the study design. Interviews were conducted with caregivers of children with SCD and professionals involved in their care. Subsequent co-design workshops and a celebration event were held online to develop a co-designed animation. Results 18 caregivers and 12 professionals were interviewed. Five themes were identified; information provision, negative implications associated with a SCD diagnosis, management of SCD, support for caregivers following a SCD diagnosis, practical and social challenges. 15 caregivers and nine professionals who were interviewed participated in two co-design workshops and nine caregivers, and six professionals attended the celebration event. This led to the development of a co-designed animation to support caregivers during the first year following their child’s sickle cell diagnosis Conclusion This study demonstrates how Experience-based Co-design can be used to translate caregivers’ and professionals’ experiences into a meaningful support resource for families following a child’s SCD diagnosis. Interview findings highlighted caregivers’ emotional shock at diagnosis, information overload, reliance on informal information sources, and need for timely, practical, and trustworthy support. Professionals emphasised the importance of culturally sensitive communication, structured information, and early engagement with services. By meaningfully involving both groups, the co-designed animation directly addresses shared priorities. The animation offers an accessible form of early support and a scalable model for collaborative resource development across other stages of the sickle cell care journey.