CHAPTER 2 46 Within and between the activities, we found diversity in the amount of support or assistance provided and the equipment used among the children to facilitate successful participation. For example, cycling was reported as performed differently, for example, on a regular bike, a walk-cycle or duo-bicycle and with guidance or independently. Also, eating was an activity that was reported as performed independently, with help or with an eating device. It can be reasoned that the regular use of the PEDI [25] could have influenced the notes in the patient files as assistive devices or support is measured with this assessment. However, only the occupational therapist used the PEDI, the other (allied) health professionals did not, yet they also reported the amount of assistance or assistive devices. In addition to the notes on independence, there were also notes about energy levels as a deciding factor in performing or avoiding activities. This is not surprising, given that in the professional literature describing the care of children with mitochondrial disorder, fatigue is a frequently mentioned burden [38]. Although the study design did not allow for a comparison between the amount of assistance or adaptations to energy levels in performing activities, there are indications that differences exist in levels of independence, assistive devices, and energy costs across the children. When children have limited abilities or are more dependent, a higher burden is placed on parents to facilitate participation and autonomy [39,40]. This suggests that future research should focus on the differences in levels of independence and assistive devices in relation to energy costs and caregiver burden. We found clear activity categories that represent the different activities and could be organized into frequently used occupational performance areas [33] as described in the literature. The activity categories are also consistent with the (sub) domains of the ICF-CY [19]. We organized the activities in categories based on the typical purpose of the activities for children, which best fit the three occupational performance areas of Reed and Sanderson [33]. It was noticed that some activity categories could be linked to more occupational performance areas than others. For instance, computing activities are used to learn or work (productivity), but also for leisure. This supports the idea that the meaning of the activity can be viewed from different perspectives, can differ for each child and that activity categories are not solely linked to a certain occupational performance area [41]. To confirm to which activity categories an activity belongs, we need to gain insight in the perspectives of the children on the individual meaning each activity has for them. The categorization of activities by the children themselves is therefore suitable for use in future research. Using patient records resulted in some limitations in interpreting the findings. As the written information was unprompted not every (allied) health professional reported the same information. Another consequence of using patient records is that it was not always clear if the activities that were performed during therapy had
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