EXTENSIVE SUMMARY FOR EDUCATIONAL PURPOSES 253 10 Extensive summary for educational purposes The aim of this thesis was to investigate whether the Perceive, Recall, Plan and Perform (PRPP)-Assessment is a reliable, valid and responsive assessment in measuring meaningful occupational performance in the everyday life of children with a mitochondrial disorder. An important prerequisite for the selection of meaningful activities is to get insight in the child’s perspective. With the results we want to contribute tailor-made child-centred care following the child’s perspective and evidence based assessment of meaningful occupational performance in everyday life. Chapter 1 – General Introduction Performing meaningful everyday activities is a basic human need1, and the most important part of participation2. However, for children with a mitochondrial disorder performing everyday activities is not self-evident, as they experience a range of burdensome symptoms like fatigue and lack of energy, speech and language problems, neurological symptoms, and developmental delay which impact all areas of daily life3-6. Unfortunately, a cure is not yet available for this progressive disease in which, generally, in 74% of the disorders the prognosis is that children die before the age of 10 years3, 7. Therefore, it is important to monitor the course of the disorder on the level of meaningful activities to maintain and/or improve quality of life. To be able to tailor care to meaningful activities and measure the effectiveness of interventions, we need to be able to measure on a personalized level with ecological valid assessments8. This incorporates two aspects; knowing what is considered a meaningful activity by the child and a suitable assessment that can measure this activity. The first aspect requires a form of communication with the child to get insight in their own opinion. Interviewing children can be problematic due to several reasons; e.g. children’s level of linguistic communication, their cognitive development, the question-and answer setting, and the power dynamics between the adult and the child9. As many children with a mitochondrial disorder experience communication problems4, it is important to find a solution to uncover the perspective of the children to make person-centred paediatric care possible. The second aspect requires assessments that on the one hand, are flexible enough to make personalized measurements of the heterogenic groups children with mitochondrial disorders possible, and on the other hand, are standardized and rigour enough tomeasure effectiveness in practice and research. Therefore, we seek for practical guidelines how to uncover the perspective of the child on meaningful activities as well as for a valid individualized occupation-based assessment. The PRPP-Assessment10, 11 shows potential to be applied to the whole target group of children with mitochondrial disorder in measuring meaningful occupational performance. It is a standardised, criterion-referenced, ecological and client-centred
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