SUMMARY 249 10 Summary Being able to perform meaningful activities is an important determinant of health and well-being. For children with mitochondrial disorders, performing meaningful activities is not self-evident due to physical, cognitive, energetic, and communicative limitations. The progressiveness of the condition reinforces the need for a focus on what is important to the child in terms of quality of life, daily activities and participation. To provide child-centred care, we need to identify what activities are important for each child and be able to assess the quality of performance of these activities. The purpose of this thesis was to investigate whether the PRPP-Assessment is a good measurement tool to measure the quality of performance of personally meaningful daily activities of children with a mitochondrial disorder. Chapter 2 provides an overview of the activities that were noted in 17 charts of children with a mitochondrial disorder. Qualitative data concerning activities were extracted from clinical notes of (allied) health care professionals. This provided the foundation for collecting information from the perspective of nine children, which is presented in Chapter 3. Children with a mitochondrial disorder perform a variety of activities. These activities represented regular childhood activities even though differences were seen in the performance of the activities. The experiences, and wants and needs of children appeared to fulfil three basic needs, based on Self- Determination Theory, namely; autonomy, competence and relatedness. The techniques used to enable children with mitochondrial disease, despite their cognitive and communicative limitations, to voice their own perspective are illustrated in Chapter 4. It became clear that with the use of creative and tailored skills and techniques, it is possible to uncover the child’s perspective. With the knowledge about the perspective of “the” child with a mitochondrial disorder, the feasibility of Talking Mats® and the PRPP-Assessment using parent- provided videos was studied in a case report in Chapter 5. Despite the fact that both instruments showed potential, there also appeared to be several challenges especially in the collection of video material. Chapter 6 therefore described how an action design study identified and overcame the challenges in implementing the PRPP-Assessment based on parent-provided videos. Overall, qualitative data from 13 parents, one teacher, and 25 caregivers was analysed. One of the key challenges found was that clarity of the criterion and the adherence of OTs to this criterion-referenced thinking was a determinant for successful scoring parent- provided videos.
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