Abstract
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 six-months pilot in three Dutch care regions. In addition, factors associated with parents' system use and non-use were analyzed. 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. 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. 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.
Highlights
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
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
This corresponds to our findings on the care of children with cerebral palsy in The Netherlands (Box 1) in which we identified various gaps in communication, such as inadequate cooperation of professionals and an experienced lack of patient-centeredness, as well as insufficient inter-professional contact necessitating parents to take up the role of messenger of information and/or care coordinator [21]
Summary
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. 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. Failure of professionals caring for the same child to communicate with one another often leaves the parents as information intermediaries [11] and/or semi-professional care coordinators [7] This corresponds to our findings on the care of children with cerebral palsy in The Netherlands (Box 1) in which we identified various gaps in communication, such as inadequate cooperation of professionals and an experienced lack of patient-centeredness, as well as insufficient inter-professional contact necessitating parents to take up the role of messenger of information and/or care coordinator [21]
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