MEANINGFUL ACTIVITIES OF CHILDREN WITH MITOCHONDRIAL DISORDER 67 3 wants/needs are overarching, they were used as the starting point. The themes on experience and performance can be viewed as sub-themes. Themes on experience were: (1) Because I can decide by myself, (2) It is more fun to do things with other people, (3) I just like it, (4) Because I can do it on my own, (5) How I feel about being helped and (6) The things that happen when I am doing the activity make it worthwhile or unpleasant. Themes on performance were: (1) With other people, (2) Adaptation of the physical context, (3) Adaptation of the activity, (4) Regular performance, (5) Support in the social context, (6) Disabilities obstruct performance which can give rise to personal challenges and (7) Performance versus avoidance. Subsequently, the themes of the different questions are each given their own heading: Wants/needs, experience or performance. I want to meet up with others whenever I want to... The children mentioned that they wanted to move around the way they wanted at the time they wanted. This desire held a true connection with meeting others. They wanted to be able to go see friends whenever they wanted to, instead of waiting for parental consent or support to get there. Boy (school age): “I want to meet up with friends whenever I want to. But my mother then says I cannot meet up with friends because I have to go to hospital. That is stupid.” Girl (adolescent): “I want to go round to my friends whenever I feel like it, even in the evening when it is dark. But I cannot go by myself because it is dark and I cannot see. But I just want to be able to go without someone having to take me there.” In this wants/needs theme, two important subthemes of experience can be recognised: ‘Because I can decide by myself’ and ‘it is more fun to do things with other people’. It also links to one subtheme of performance: ‘With other people’. Because I can decide by myself Some children mentioned that the fun part of the activity is that they can decide by themselves when and/or how to do it. Girl (school age): “I like colouring because you can do it the way you want. I can choose my own colours and make it very pretty.” Boy (school age): “Sometimes I like doing my homework, but sometimes I do not feel like it. It is only fun if I can decide when to do it, so when I feel like it.”
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