JMIR Publications

ABSTRACT

Background:

Caregivers of children with disabilities often face substantial demands related to coordinating care across health, social, and educational services. Fragmented communication and limited information sharing across sectors place caregivers in the role of intermediaries between professionals, potentially increasing their burden and affecting family well-being. Shared digital communication solutions may support more integrated and family-centered services by facilitating communication and information exchange across sectors. However, little is known about how such solutions influence caregivers' experiences of communication, coordination, and their role as care coordinators.

Objective:

This study aims to evaluate and explore caregivers' perceptions of communication and coordination, before and after gaining access to a shared digital communication intervention connecting caregivers of children with disabilities and professionals across health, social, and educational sectors. Furthermore, the study explores caregivers' experiences of the impact of the intervention.

Methods:

This study is a convergent mixed methods evaluation conducted within a complex intervention framework as part of the SHARE IT project, which investigates a shared digital communication intervention co-designed with caregivers and professionals. Quantitative data will be collected using patient-reported outcome measures at baseline, before access to the intervention, and at the end of the intervention period. Qualitative data will be collected through follow-up semi structured interviews with a purposively selected subset of caregivers. Quantitative and qualitative findings will be integrated to provide a comprehensive understanding of changes in caregivers' perceptions of communication and coordination, their experiences of using the intervention, and the contextual factors influencing its perceived impact.

Results:

The SHARE IT project received funding in 2024. Prior to the current evaluation, an adaptation phase was conducted in 2024, including investigations of legal requirements and a co-design workshop study involving caregivers, professionals, and software developers. This was followed by a feasibility phase conducted in 2025-2026, during which the intervention was tested with caregivers of 15 children, involving 70 professionals across disciplines and sectors. Recruitment for the present evaluation began in October 2026 and is ongoing. Each family will have access to the intervention for 10 months, and data collection is expected to be completed by the end of 2027.

Conclusions:

This study will provide insights into the potential of a shared digital communication intervention to support caregivers of children with disabilities in navigating fragmented health, social, and educational services. By integrating quantitative outcome measures with caregivers' experiences, the study will contribute to understanding how and under what circumstances shared digital communication may strengthen cross-sector coordination, promote family-centered care, and support caregivers in their role as care coordinators. The findings will inform further development and implementation of digital solutions to support more integrated services for children with disabilities and their families. Clinical Trial: The study was registered prospectively on the Open Science Framework (OSF) (https://osf.io/h7snd)