CHAPTER 3 56 calculate and engaging in activities at school, around the neighbourhood and in the community (Koene et al. 2013). However, a recent exploratory qualitative study indicates that the mitochondrial disorder does not impact the categories of activities the children perform compared to healthy peers. Indeed, these subjects perform self-care-, therapy-, school-, computing-, hobby-, play-, sports- and mobility/transport-related activities and house chores. Instead, the impact is noticeable in how these children perform the activities; evidence suggests differences in the level of independence, assistive device usage and energy costs compared to healthy peers (Lindenschot et al. 2018). Still, since this study was a retrospective chart review, it remains unclear whether the activities the children performed represent what they themselves prefer. Knowledge about the type of activities children perform and prefer, as well as how they perform these activities, is important to be able to provide tailored occupation-based care. However, there is a scarcity of literature on the impact of mitochondrial disorders on everyday activities, and most importantly, the perspective of the child is underexplored in these studies. The perspective of the individual on their everyday life is critical, because personalised and value-based care is an important factor in paediatric health care (Coyne et al. 2016). To achieve value-based care, we need to know how children value their activities. Previous literature that studied the perspective of children on their everyday life activities focused specifically on leisure or play and not on everyday activities, even though children want to participate in all parts of everyday life (Costa et al. 2017). For example, Powrie et al. (2015) conducted a systematic evidence synthesis of the meaning of leisure for children and young people with physical disabilities. They identified four themes that represent the meaning of leisure: fun, freedom, fulfilment and friendship. Graham et al. (2018) used systemic thematic synthesis to evaluate the meaning of play for children and young people with physical disabilities. They identified several analytical themes: play can feel both positive and negative, play can draw attention towards or away from my disability, play is a social interaction, I participate differently from my peers and needing help feels normal. These findings are probably not transferrable to other areas of daily life like self-care or productivity. Besides, these studies focused on children with physical disabilities. Moreover, literature that does include children with multiple disabilities often uses parents as an input for their results. For example, the review of Willis et al. (2017) provides a good overview on elements that contribute to meaningful participation: person-based elements (having fun, experiencing success, belonging, experiencing freedom, developing an identity), environment-focused elements (authentic friendships, the opportunity to participate, role models, family support) and activity-related element (learning). Unfortunately, they included more literature about children with physical disabilities
RkJQdWJsaXNoZXIy MjY0ODMw