MEANINGFUL ACTIVITIES OF CHILDREN WITH MITOCHONDRIAL DISORDER 57 3 than children with multiple disabilities. They also included studies from both the children’s and parents’ perspectives. While Costa et al. (2017) mentioned that parents’ main concerns are related to school task performance, children assign priority to their independence, competence and joy in meaningful everyday activities. Nonetheless, we are aware of one study that focused on participation concepts in children and adults with multiple disabilities (Eriksson and Granlund 2004) that may be comparable to our study population. They found nine themes related to how the subjects experience participation: characteristics/self-esteem, fellowship, communication, being a part of activities, self-determination, prerequisites for taking part in activities, the role of the adult, conditions in the living environment and physical environment. However, this study focused on participation as a total concept and not on the experience of singular everyday activities. Further, they only examined the special education context, and the sample also included 19 adults out of 334 participants. Hence, the individual perspective of the child with multiple disabilities, such as children with mitochondrial disorders, on everyday activities is still underexplored. This perspective can be used in clinical practice to establish occupation based, value-based and personalised care. Therefore, the aim of this study was to gain insight into the perspectives and values of children with mitochondrial disorders on their everyday activities. To achieve this aim, we asked children what activities they perform, how they perform and experience these activities and what their wants and needs are. Methods A qualitative study, using semi-structured interviews, was conducted. Content analysis (Hsieh and Shannon 2005) was used to allow themes to emerge from the data. Purposeful sampling was used to include 2-to-18-year-old children with a mitochondrial disorder with different functioning profiles (Lindenschot et al. 2018). Participants and recruitment Children with a genetically confirmed mitochondrial disorder, who are periodically evaluated at the Radboud University Medical Centre (Radboudumc) Nijmegen, were eligible to participate in the study. Criteria used for consideration were age and current involvement in other studies (to prevent too much of a burden on the children). No exclusion criteria considering physical, cognitive and communication (dis)abilities were formulated. Children who were not involved in other studies were contacted (n = 13). The patient information letter was sent to these children and their parents by the medical doctor who considered the children for eligibility; she
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