Abstract
Background: Parents of children with severe physical disabilities act as coordinators, navigating their child's needs across health, social, and educational systems. This responsibility is undertaken without the necessary tools and support, resulting in a significant caregiver burden. Placing the responsibility of facilitating inter-professional and inter-sectoral communication on parents also increases the risk of information loss, ultimately resulting in suboptimal outcomes for the child. Therefore, this study aims to explore the visions of parents and professionals for a messenger-like digital tool to enhance shared communication and coordination across contexts, and to extract design specifications for such a tool.
Approach: Through three consecutive workshops based on principles from The Future Workshop and Patient Journey Mapping, a co-creation process with 1) parents, 2) professionals, and 3) software developers is initiated. The first two workshops are audio recorded and subsequently transcribed for thematic analysis guided by Brinkmann & Kvale and conducted in NVivo (QSR International). Findings from these workshops are combined in a matrix analysis to guide the further development of the tool in the third workshop with software developers. The workshop with parents was conducted on October 28, 2024, and the next two are scheduled for the first quarter of 2025.
Results: Eight parents, including three fathers and five mothers, participated in the first workshop. Preliminary findings reveal that they feel overwhelmed by the task of coordinating their children's activities across sectors. This contributes to feelings of insecurity, frustration, and helplessness, which significantly adds to their caregiver burden. Parents report major communication and coordination breakdowns in their children's care across various sectors, involving a lack of information sharing, leading to risks of mistreatment and delays in necessary treatments and services. They propose the creation of a consolidated, accessible, and up-to-date shared digital tool for real-time communication among relevant professionals and themselves. Additionally, parents advocate for a dedicated coordinator to guide and collaborate with them across sectors from the onset of their child's disability assessment. While parents believe that a messenger-like digital tool for shared communication may be helpful in specific situations, they also express concerns that such a tool might only partially address the broader communication and coordination challenges they face, underscoring the need for further contextual adaptation.
Implications: The first workshop with parents confirms and expands on the challenges they face regarding communication and coordination related to their children's physical disabilities and points to possible solutions that will be incorporated into the ongoing process of workshops and the further refinement of the tool. The results from all three workshops will be presented at the conference.