GENERAL DISCUSSION 225 9 General Discussion In this thesis we investigated what activities children with a mitochondrial disorder (want to) perform, whether they can indicate this themselves, and whether the Perceive, Recall, Plan and Perform (PRPP)-Assessment is a reliable, valid, and responsive assessment in measuring these meaningful activities in everyday life. Therefore we indicated 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 in the daily environment. Based on Chapter 2 and 3 we can conclude that children with a mitochondrial disorder perform a variety of activities within the categories: self-care, house chores, therapy, school, work, play/game/hobby, sports, and mobility/transport. The activities represented regular childhood activities (except therapy activities) and the type of activities are not necessarily linked to the child’s impairments. However, in performing these activities we do see differences compared to peers, for instance; adaptation of the physical environment, adaptation of the activity or support of the social context. The experiences, and wants and needs of children with mitochondrial disorder showed that they would like to fulfil three basis needs (based on the Self-Determination Theory1-3) which were: autonomy, competence and relatedness. Furthermore, inChapter 4, the interview techniques and interviewer skills that were used, were analysed and resulted in knowledge helpful to uncover the child’s perspective. This chapter showed the importance to tailor the type of questions to the verbal communication level of the child. In addition, several supporting interviewer skills were identified and embodied verbal and non-verbal communication, adaptation in bonding and timing and flexibility. Also, it was found that parents’ presence influenced the interview and their participation was either supportive to uncover the child’s perspective or unsupportive when taking over answering questions for the child. Overall, the study showed that using creative and tailored skills/techniques when interviewing children enables uncovering the child’s perspective. In Chapter 5 and 6 we identified several challenges when assessing meaningful occupational performance in the daily environment with the PRPP-Assessment. The challenges were categorized into four themes; instructing parents, handling video material, scoring parent-provided videos and scoring children (with very limited functional abilities) children. 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. Recommendations to overcome the challenge were presented and implemented in regional practice. The psychometric studies on reliability, validity and responsiveness in Chapter 7 and 8 showed the potential of the PRPP-Assessment with the use of parent-provided
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