DAILY ACTIVITIES OF CHILDREN WITH MITOCHONDRIAL DISORDER 45 2 Leisure The area under leisure featured all the activities that children do to play or occupy their free time. It included the following categories: computing, hobbies, play and sports. In each of the three profiles, the (allied) health care professionals noted all four different categories in leisure. The physically passive activities were reported more in the profile global low functioning than the other two profiles. For instance, it was mentioned that: “after school he is tired and uses his laptop or tablet to play games, uses Facebook or watches movies”. In the profiles of children with a better ambulation, there were more regular physically active activities, for instance “After finishing his homework he usually goes outside and jumps on the trampoline or plays soccer”. The analysis showed that the children performed individual leisure activities, for example, horse riding, jumping on the trampoline, watching football or going to Bible Study. Some activities were more popular, including swimming, gymnastics, watching television or a movie. Discussion This study provides a first overview of the activity categories of children with a mitochondrial disorder. Three occupational performance areas: personal maintenance, productivity and leisure [33] comprised, as reported by allied health professionals in patient records, nine activity categories: self-care, house chores, therapy, school, computing, hobby, play, sports and mobility/transport. Contrary to our expectations, we found that all activity categories were present in each global functioning profile. This is congruent with the guiding principles for children’s rehabilitation in the Netherlands, which stipulate that children with disabilities are full participants in everyday life [35]. The activities performed by children with mitochondrial disorders, as identified in this study, resemble the activities of typically developing children identified in the PACS Pediatric Activity Card Sort: the PACS [36], with one exception: ‘therapy activities’. The PACS was developed based on typical activities of childhood that are relevant for all, not only for typically developing children. This means that this instrument has potential for use as an outcome measure for children with mitochondrial disorders. Although the current study did not compare the activities of children with mitochondrial disorders to healthy peers, the results appear to echo the findings of Shields [6] and King [37] who found that there were more similarities than differences in the participation of children with intellectual disabilities and their typically developing peers. The current findings and existing literature emphasize the fact that the type of activities a child engages in is not necessarily linked to the child’s disabilities, but the nature of the performance differs.
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