MEANINGFUL ACTIVITIES OF CHILDREN WITH MITOCHONDRIAL DISORDER 61 3 before the interview (based on the previous retrospective chart study), the interview commenced with standard-semi structured questions for children with a global moderate functioning profile or with Talking mats® or auto-driven photos for the other two functioning profiles. However, for adolescent children, the interview began with standard semi-questions to avoid making her/him feel like the interview technique was childish. This last choice was made by the child and parent based on preferences. When the global functioning profile was not known, the researcher decided which technique to use based on her observations and professional reasoning during her introduction to the child. All interviews started with a ‘try-out’; Table 3 Topic list for the interview Aim: Gain insight into the children’s perspectives on everyday activities: what do the children do, how do they perform the activities, how do they experience activities and what do they want to do? Topics Aspects Daily Activities - Based on chart study: o School activities o Computing activities o Hobby activities o Play activities o Sports activities o Mobility/transport activities o Self-care activities o House chores o Therapy activities Fun – not fun - Selecting fun activities - Selecting activities that are not fun Experience activities - Why are the activities fun or not fun? - What is the fun or not-fun part? - Why do you do it? - What is the importance? Ways of performance - With whom? - Where? - Support/devices/specific equipment? - When are you satisified? Wants and needs - Wants and needs in general - Activities you do not perform, but want to o Why do you not perform these? o Why do you want to? - Activities you want to perform better o Why do you want to do these better? o What is the desired level of performance?
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