A web-based communication system for the integrated care setting of cerebral palsy: experienced contribution to parent-professional communication

Introduction: To improve communication in the integrated care setting of children with cerebral palsy, we developed a web-based system for parent-professional and inter-professional communication. The present study aimed to evaluate parents' experiences regarding the system's contribution to their communication with professionals during a 6-months pilot in three Dutch care regions. In addition, factors associated with parents' system use and non-use were analyzed.

Theory and methods: The system's functional specifications were based on key elements of the Chronic Care Model and quality dimensions formulated by the Institute of Medicine. At baseline, parents completed a T0-questionnaire on their experiences regarding sufficiency of contact, accessibility of professionals, timeliness of information exchange, consistency of information and parents' role as messenger of information and/or care coordinator. After the pilot, parents completed a T1-questionnaire on their experiences regarding the system's contribution to each of these aspects.

Results: Of the 30 participating parents 21 had used the system, of which 20 completed the T1-questionnaire. All these parents indicated that they had experienced a contribution of the system to parent-professional communication, especially with respect to accessibility of professionals, sufficiency of contact and timeliness of information exchange, and to a lesser extent consistency of information and parents' messenger/ coordinator role. In comparison with non-users, users had less positive baseline experiences with accessibility and a higher number of professionals in the child's care network.

Conclusions: All users indicated a contribution of the system to parent-professional communication, although the extent of the experienced contribution varied considerably. Based on the differences found between users and non-users, further research might focus on the system's value for complex care networks and problematic access to professionals.