EXTENSIVE SUMMARY FOR EDUCATIONAL PURPOSES 261 10 In conclusion, this study demonstrated the potential of the PRPP-Assessment as an outcome measure for heterogenic groups of children and the potential of the PRPP-Intervention. In addition, it showed the importance when implementing the PRPP-Assessment in practice for evaluative objectives, that tasks and criterion should be carefully selected and formulated, a fixed-task analysis is preferred, and a before and after measurement should be conducted under the same conditions to validly measure change. Future studies should focus on substantiating these results in larger studies, and on further development and effectiveness of the PRPP- Intervention for children with multiple disabilities on improving their meaningful daily activities. Chapter 9 – General Discussion Chapter 9 provides a reflection on the overall findings of the studies and subsequent suggestion for clinical practice, education and future research. With this thesis we provided evidence for personalized occupation-based assessment of meaningful activities for children with mitochondrial disorder with the use of the PRPP-Assessment based on parent-provided videos. We exposed and addressed the difficulties in person-centred care in individuals with communication difficulties and in implementing this perspective to select activities to be monitored. We also expanded the knowledge on how to precisely monitor the important activities of these individuals using the PRPP-Assessment and care at a distance. A key issue we found is that uncovering the child’s perspective was challenging and asked for effort and creativity, with the latter one being slightly unconventional in research. To enhance communication, three aspects are important; the interviewer skills, the use of augmentative and alternative communication and parental influence. I suggest that professionals take responsibility and skill themselves in uncovering the child’s perspective. In addition, bachelor education could benefit from an interprofessional module on communicating with children in which the focus is on learning by doing in ‘actual’ practice and reflecting on video material. Secondly, the view on children with mitochondrial disorder was discussed. In previous studies, it seemed that the developmental potential of children was not acknowledged and the focus was mainly on disease management. I suggested to usea family centredparticipation-focusedapproach inpracticewhichacknowledges that participation is an outcome of an ongoing interaction between the person, the occupation and the environment. I also suggest that the combined use of the COPM and GAS could be helpful in acknowledging the developmental potential, but the GAS would need further development for this aim. I also highlighted the importance of research in heterogeneous groups. I discussed that homogeneity based on the individuals’ biomedical state is irrelevant as the homogeneity lies in the focus on activities and participation. Biomedically
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