CHAPTER 9 226 videos to assess and evaluate children with a mitochondrial disorder. The studies showed sufficient to good internal consistency, intra- and inter-rater reliability, construct validity and responsiveness. In addition, it showed that attention should be paid to a valid task selection and analysis (stage 1), the task should contain enough cognitive challenge, andmeasuring under the same conditions is necessary when using it to assess change. In addition, chapter 8 showed the potential of the PRPP-Intervention in a home-based video coaching program in enabling daily activities. In this general discussion, I will reflect on the insights that were retrieved from the studies performed in this thesis in relation to child-centred care, research, educational and societal issues. Topics will include: incorporating the child’s perspective in care, the view on children with a mitochondrial disorder, research with heterogeneous groups, value of PRPP-Assessment and the advantages of home-based care as a result of delivering ‘the right care at the right place’4. I will conclude with recommendations for clinical practice, future research and education in making a difference for the children. Lessons learned on challenges to incorporate child’s perspective in care In the first chapter, I discussed the importance and challenges to uncover the child’s perspective to enable child centred care. I have experienced the challenges first hand in our interviews5 with children as there was no clear-cut method that could be applied to all children. Also, interview skills could not be set on forehand based on the global functioning profile of the child. Furthermore, my first impression of the child sometimes misled the estimation of communication level, learning that visible physical disabilities can lead to underestimating the child’s ability to communicate their perspective. Therefore, it was necessary to analyse the communication level of the child during the interview, and then adapt the questioning technique. In addition, it was necessary to use different interview techniques and interviewer skills to uncover the child’s perspective6. Capturing the child’s perspective requires adults, parents and health professionals to be attentive, sensitive and supportive of each child’s expressions, experiences and perceptions7. Research mainly focuses on the difference in communication between adults and children. Little attention is paid to how adults and children are communicating with each other and how they can communicate based on their (in)abilities8. Clark 9 states, based on review, that it is important to be alert to children’s differing perspectives and interests as well as their needs. Until the 90s it was assumed that children were not able to trustworthy
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