GENERAL INTRODUCTION 25 1 Aims of the study and outline of the thesis The aim of this thesis is to investigate whether the PRPP-Assessment is a reliable, valid and responsive assessment in measuring meaningful occupational performance in the everyday life of children with a mitochondrial disorder. A prerequisite is to get knowledge on the meaningful activities from the child’s perspective. It is obvious that involving children with multiple disabilities in research, and in health care, needs more attention. With the results of this thesis we aim to give insight in ways to involve the children, and contribute to tailor-made personalized, and evidence based assessment of meaningful occupational performance in everyday life. The outline of this thesis follows two main objectives: A) Getting insight in the child’s perspective on meaningful activities, and B) Getting insight in the psychometric properties of the PRPP-Assessment in order to assess meaningful activities. To achieve this, the following questions are addressed: 1. Which everyday activities do children with a mitochondrial disorder engage in, how do they perform and experience these activities and what are their wishes and needs for everyday life? 2. What challenges do parents and professionals face when assessing meaningful occupational performance in everyday life with the PRPP-Assessment? 3. What are the psychometric properties of the PRPP-Assessment when applying it to children with a mitochondrial disorder by using parent-provided videos? For the first question, a retrospective chart study was performed which we describe in chapter 2. This resulted in a framework that showed the high variety on everyday activities, but lacked on the child’s perspective. Therefore, to get insight in children’s opinions and experiences, they were interviewed. These results are reported in chapter 3. To get insight in the child’s perspective, one of the challenges is the communication with the child. In chapter 4, we accordingly reflect on the different ways that were used to interview children. Furthermore, we focused more in depth on one child with a mitochondrial disorder and describe how we got insight into the child’s perspective by using Talking Mats®, as a prerequisite to be able to measure the performance of the child’s preferred meaningful activities with the PRPP-Assessment (chapter 5). This led to the action design study we performed to get insight in and be able to overcome challenges implementing the PRPP-Assessment in person-centred care for children with a mitochondrial disorder in the academic hospital. Findings of this action design study and ways to overcome its challenges are described in chapter 6.
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