CHAPTER 2 40 In step 2 of the data analysis, the term ‘activity’ was defined based on the ICF-CY [19] and occupational therapy literature [30-32] as: an activity that is the meaningful targeted performance of tasks and/or actions by an individual, like playing guitar, dressing yourself, eating, cycling. For the analysis of the patient records, the following steps were conducted by one of the researchers: 3. Read text and highlight all text that appears to represent activity; 4. Code the highlighted text with codes fitting the concept activity; 5. Categorize the codes into groups of activities; 6. Organize the categories (the different groups of activities) into three occupational performance areas of Reed and Sanderson [33]: personal maintenance, productivity and leisure. The procedure of the analysis and the result of steps 4 and 6 were peer reviewed by the fourth author (TS). Ethical considerations The data used in this research were obtained during the medical care for which the child and parents gave approval to use anonymously for research (ethical board approval nr. 2013-287). Data were deidentified before analysis. The research was conducted conforming to the ethical principles of the Declaration of Helsinki [34]. Results Patient records of seventeen children (five girls and twelve boys) were included. The age of the children varied from 4 to 18 years old. Eight children had a mutation on their nuclear DNA and nine children on mitochondrial DNA. Five children demonstrated a global low functioning profile, five children a low cognitive functioning profile with a moderate to normal ambulation, and seven children demonstrated a global moderate functioning profile. The clinical and genetic characteristics of the children are presented in Table 1. More clinically relevant priorities hindered scheduling of the fatigue assessment in two cases. Therefore they were not available in the chart. As mentioned before, the activities were organized in three occupational performance areas of Reed and Sanderson: personal maintenance, productivity and leisure [33]. Personal maintenance activities permit a person to maintain individual life support needs, for example, getting dressed or taking a shower. Productivity activities assist society to facilitate each person to meet individual
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