EXTENSIVE SUMMARY FOR EDUCATIONAL PURPOSES 255 10 Results showed activities in 9 activity categories: self-care, house chores, therapy, school, computing, hobby, play, sports, and mobility/transport. The activity categories of low-functioning children did not differ from average-functioning children, although descriptions of specific activities differed between groups, which indicated differences in levels of independence, assistive device usage, and energy costs. This study gave insight into the various activities performed by children with mitochondrial disorder as reported by professionals. In addition, although the children varied in capacities and limitations, all activity categories were present in each global functioning profile. Therefore, the findings emphasizes the need for involving the children’s perspective in care and supports the need for person-centred and strength-based care. As a consequence of using charts, it was not always clear if the noted activities were experienced as meaningful in the daily life situation and how they were connected to the occupational performance areas of personal maintenance, productivity and leisure. In addition, bias exists because it relied on what the professionals found important to note in the charts. We suggested that interviewing the children themselves would provide knowledge about their self-reported activity performance and experience in daily life. Chapter 3 – Opinions and experiences with meaningful activities from the perspective of children with mitochondrial disorder Chapter 3 describes the qualitative study that aimed to gain insight into children’s perspective on activities by (1) asking what activities they perform, (2) how they perform them, (3) how they experienced these activities and (4) their wants and needs. Nine children with a mitochondrial disorder, aged 6 to 18 years and representing the three functional profiles, participated in semi-structured interviews and seven interviews were viewed as successful in uncovering the child’s perspective. Different techniques, adapted to the child’s abilities and preferences, were used to stimulate the child’s responses and expressions. The seven successful interviews were analysed by content analysis based on video footage and audio transcriptions. Results enlarged the variety of activities already found in the chart study (chapter 2) and refined the overview of categories into eight categories and several subcategories, also showing the double linkage of two categories with meaning to the occupational performance areas (e.g. therapy activities with the meaning of productivity or personal maintenance and mobility/transport activities with the meaning of personal maintenance or leisure). Results also gave insight in the children’s perspectives on activities which were visualised in a network display. There were four themes on want/needs; (1) I want to meet up with others whenever I want to, (2) I want to be able to…, (3) I do not want to… and (4) Dream. As these themes on wants/needs are overarching, they were used as the starting point. The themes on experience (E) and performance (P)
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