CHAPTER 3 82 an assessment also needs to allow customisation of activities. Subsequently, an assessment should be able to measure occupational performance without floor or ceiling effects for the different global functioning profiles (Lindenschot et al. 2018). The findings of the current study can be used to develop assessments for children with mitochondrial disorders to enhance personalised and value-based care. Conclusion This qualitative study exposed the perspectives and values of children with a mitochondrial disorder on their everyday activities. Children expressed their perspective on their wants and needs, how they experienced activities and how they performed the activities. These three factors were interconnected. The identified themes fit with the SDT, which was developed for children of all ages and different developmental abilities, and proposes that people perform activities to fulfil three basic psychological needs: autonomy, competence, and relatedness. The important aspects were meeting up with others whenever they wanted to, being able to learn things, do things better, longer, (more) independently or just like others, not performing activities that caused discomfort and dreams. The themes showed person-based, activity-based, context-based and participation-based elements. This study shows how children with mitochondrial disorder experience and value everyday activities. It contributes to understanding of choices of children with disabilities and the stimulation their motivation in participating in everyday activities, information that is relevant for parents, teachers and health care professionals. For example, occupational therapists can use the findings to consider the entire scope of valued activities, dreams and experiences to use occupation as ends and occupation as means. Furthermore, the study provides a foundation for selecting and developing assessments to measure activity performance that can contribute to personalised and value-based care, which puts emphasis on involving the children’s perspective in care. Acknowledgments We would like to thank the children and parents who participated in this study. Also, we would like to thank Edith Cup, PhD and Sabine van Erp, MSc for participating in the nominal group technique analysis. Lastly, we would like to thank Christel Brink for drawing additional Talking Mats cards.
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