Abstract
Children with cerebral palsy (CP) face limitations in their daily activities, in particular regarding mobility and self-care. Although many treatment ideas and approaches are available, evidence to show which intervention is the most effective for preschool children with CP is lacking. Furthermore, the actual content of rehabilitation interventions and the
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mechanisms by which the child’s functioning improves are generally perceived as a “Black box”.
This thesis reports on studies examining determinants of development of self-care and mobility activities, and examining the efficacy of a child-focused, a context-focused, and a regular care approach in preschool children with CP. Furthermore, physical and occupational therapists’ behaviors in the therapy sessions of the regular care approach were compared with those of therapists in the child-focused and context-focused intervention approaches. In addition, the experiences of parents regarding their child’s intervention approach were investigated. These studies were performed at the Center of Excellence for Rehabilitation Medicine from De Hoogstraat Rehabilitation and UMC Utrecht, as part of the LEARN 2 MOVE 2-3 project, which is part of a the national pediatric rehabilitation research program LEARN 2 MOVE. The BOSK, the Dutch association of physically disabled persons and their parents, was involved in all stages of the project. Furthermore, the study on parents’ experiences was designed together with a parent of a young child with CP.
The results showed that in preschool children with CP, a child-focused, a context-focused, and a regular care approach, as delivered by physical or occupational therapists over a 6-month study intervention period in a rehabilitation setting, resulted in similar development of the children’s self-care and mobility capabilities. The behaviors of the therapists in the regular care approach most closely resembled that of the therapists in the child-focused approach and was found to be significantly different to that of the context-focused intervention approach. Furthermore, it was found that the development of daily activities was less favorable for children with cerebral palsy with severe limitations in gross motor ability and in cognitive capacity at the age of two. The study on the experiences of parents of young children with CP in relation to the physical and/or occupational therapy their child receives in a rehabilitation setting, showed that information, communication, and partnership, as well as the process of parent empowerment, are important themes. There was much variation in parents’ experiences and needs and parents’ needs were also found to change over time, which was related to the empowerment process most parents went through. The course of the parent empowerment process was related to the family’s context and hence found to be different for each parent.
In view of the equal effectiveness of the three therapy approaches in terms of optimizing the child’s functioning in self-care and mobility capabilities, therapists can select one of the three approaches to suit the child’s individual situation. To better support parents in the parent empowerment process, service providers working with children with chronic conditions should be educated on this process and trained in ways to facilitate this.
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