The Perspectives and Values of Children with a Mitochondrial Disorder with Regard to Everyday Activities

Abstract

AbstractEngagement for children with mitochondrial disorder is not self evident. To develop personalised and value-based care for this population, we require knowledge about their perspectives and values with regards to everyday activities. To gain insight into children’s perspective on activities by (1) asking what activities they perform, (2) how they perform them, (3) how they experience these activities and (4) their wants and needs. Seven semi-structured content analyzed interviews. The interviews identified a variety of activities. The overarching themes on wants/needs were ‘I want to meet up with others whenever I want to’,‘I want to be able to…’, ‘I don’t want to…’ and ‘Dream’. These themes were interconnected to thirteen other themes that captured how children experience and perform activities, for example, ‘Because I can decide by myself’, ‘Because I can do it on my own’ and ‘It is more fun to do things with other people’. The activities children performed represent regular childhood activities. The identified themes fit with the three aspects of the self-determination theory: autonomy, competence and relatedness. This study exposed the broad child perspective and should provide better understanding of children’s choices in their participation in everyday activities.