Adapting a Shared Digital Communication Intervention for Caregivers of Children with Physical Disabilities and Professionals through Co-design: A Workshop Study

Introduction Caregivers of children with disabilities act as intermediaries between professionals due to fragmented communication and information sharing across sectors. The use of shared digital communication may support integrated care. Therefore, this study explored challenges and needs among caregivers and professionals and how an existing shared digital communication intervention could be adapted to support communication and coordination in this context. Methods Three future workshops involved 26 co-designers: caregivers (n=8), professionals across sectors (n=14), and software developers (n=4). Caregiver and professional data were analysed thematically, followed by matrix analysis to identify convergences, tensions, and design principles. In workshop with software developers, design principles were translated into design specifications. Results Both caregivers and professionals described how caregivers become de facto care coordinators. Clear responsibilities, continuity, and shared knowledge were identified as essential for improving communication and coordination. Shared digital communication was considered promising, but tensions emerged between accessibility and workload, and between transparency and confidentiality. The adapted intervention incorporated structured communication, shared responsibility, relational continuity, a shared overview, and a human digital coordination function. Discussion/conclusion The adapted intervention provides a foundation for cross-sector communication between caregivers and professionals and adds to the evidence base of communication solutions that may strengthen integrated care.