CHAPTER 3 60 All the children were living with their parents at home. All children in the global low functioning profile and two children in the low cognitive functioning and moderate to normal ambulation profile went to a special education school. The other four children went to regular education school. Data collection Semi-structured interviews were used to gain several perspectives from the children about their everyday activities. The perspectives were: (1) What do they do?; (2) How do they perform these activities?; (3) Why do they perform these activities; (4) What do they want to do (better)? All interviews were performed by the same researcher (ML) and conducted with the same topic list (see Table 3) and interview guide. The interviews were performed in Dutch, and the mother of the German-speaking child translated for her child. The researcher was a native Dutch speaker with intermediate competence of the German language. During the interview, different techniques were used to stimulate the child’s responses and expressions. The interview techniques were adapted to the child’s abilities and his/her communication preferences. The following techniques were integrated during the interview: ‘standard’ semi-structured questions, closed questions based on information from the mother, auto-driven photo elicitation, use of Talking Mats® picture symbols, questions during play, use of play (fantasy play) and use of a hand-puppet. The interviewer/researcher is also a paediatric occupational therapist and is skilled in different interview techniques and communicating with children. The decision- making algorithm used for deciding on the interview technique started with knowledge about the global functioning profile. When this information was known Table 2 Genetic defects in the participating children Number Genea Mutation 1 ATP6 m.09185T>C 1 ATP6 m.8993T>G 1 mt-tRNASer m.7507A>G 1 MTFMT c.626C>T; c.766C>T 1 NDUFS1 c.683T>C; c.737+3A>G 2 NDUFS7 c.364G>A (homozygous) 1 OPA1 c.910C>T (homozygous) 1 SDHA c.642A>G (homozygous) a: ATP6 = ATP synthase 6; mt-tRNA Ser = mitochondrial tRNA serine; MTFMT = mitochondrial methionyltRNA formyltransferase; NDUFS1 = NADH-ubiquinone oxidoreducase Fe-S protein 1; NDUFS7 = NADHubiquinone oxidoreducase Fe-S protein 7; OPA1= optic atrophy 1; SDHA = succinate dehydrogenase complex, subunit A.
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