Abstract

In this study, we evaluated patient care communication in the integrated care setting of children with cerebral palsy in three Dutch regions in order to identify relevant communication gaps experienced by both parents and involved professionals. A three-step mixed method approach was used starting with a questionnaire to identify communication links in which parents experienced gaps. In subsequent in-depth interviews with parents and focus group meetings with professionals underlying factors were evaluated. In total, 197 parents completed the questionnaire (response 67%); 6% scored negative on parent-professional communication, whereas 17% scored negative on inter-professional communication, especially between the rehabilitation physician and primary care physiotherapy (16%) and (special) education/day care (15%). In-depth interviews among a subset of 20 parents revealed various sources of dissatisfaction such as lack of cooperation and patient centeredness, inappropriate amount of information exchange and professional use of parents as messenger of information. Focus group meetings revealed that professionals recognized these gaps. They attributed them to capacity problems, lack of interdisciplinary guidelines and clear definition of roles, but also a certain hesitance for contact due to unfamiliarity with involved professionals in the care network. Parents particularly identified gaps in inter-professional communication between (rehabilitation) hospitals and primary care settings. Involved professionals recognized these gaps and primarily attributed them to organizational factors. Improvement initiatives should focus on these factors as well as facilitation of low-threshold contact across the patient's care network.

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