Processes of care in paediatric rehabilitation

Abstract

In this thesis the paediatric rehabilitation treatment process in the Netherlands is described with a focus on the parents' perspective. To what extent are parents involved in the different stages of the paediatric rehabilitation treatment process? What is being done in treatment? Is there a clear relation between treatment activities and parent identified problems? Are parents satisfied about the services they and their child have received? Knowing how theories about care provision have been operationalized in clinical practice will help to sharpen guidelines regarding family-centred care and will help to further improve the quality of paediatric rehabilitation care. This thesis provides the Dutch paediatric rehabilitation field with three valid and reliable self-administered measures of the family-centredness and client-centredness of services: the Measure of Processes of Care (MPOC-56 and MPOC-20), the Measure of Processes of Care for Service Providers (MPOC-SP), and the Giving Youth a Voice Questionnaire (GYV-20). Interviews with 75 parents offer detailed information on parent satisfaction with received rehabilitation services, their involvement in the care process and parents' suggestions to improve their involvement in paediatric rehabilitation care. The data show that parents are to a large extent involved in all stages of the treatment process in Dutch paediatric rehabilitation centres. The average level of parent satisfaction about received services is high. According to the interviewed parents the communication between professionals and parents, parent involvement in goal setting, and parent involvement in treatment could be improved upon. Finally, a single case observational study in five school-aged children with complex needs provides information about tuning and transparency of the rehabilitation treatment process. Five randomly selected subjects with cerebral palsy were observed in detail during physical, occupational, and speech therapy, and their written reports were studied. Parent identified problems, treatment goals, and treatment activities were linked to the ICF components, domains and categories, and the amount of agreement was determined by code comparison. The analyses indicated some tuning of parent identified problems, goals and activities in all subjects, but only four of the treatment activities were perfectly tuned to treatment goals as well as to parent identified problems. The three main topics within this thesis, development of valid measures of the family-centredness of care, parent involvement in the care process, and tuning and transparency of care, strongly support a successful implementation of family-centred care in the Netherlands. Nevertheless, a lot of the work still has to be done. Parent participation in their child's care process can be enhanced, and the tuning and transparency of the paediatric rehabilitation treatment process can improve much when limiting conditions -of which time and money are most important- are removed, when the right tools are provided with a guided implementation, and when scientific research provides the working field with a scientific justification for interventions, preferably in cooperation with clinical workers.