GENERAL INTRODUCTION 15 1 “I would like to take the traffic-exam, just like my friends. But I am not allowed to participate, because I cycle too slowly.” “I would love to play with my friends every day. But regularly I can’t, because I am so tired, nauseous and dizzy. That makes me sad.” “I don’t participate in gym class at school. If I did, I would be too tired for afternoon classes. My classmates are always so excited when they come back. Therefore, I feel like I am missing out on fun times.” “My child is totally dependent on me. I support him in everything. I worry about his feelings and emotions. I wonder what he himself would want.” “She wants to learn to tie her shoe-laces, but that doesn’t seem wise. That will take so much energy out of her; both learning and doing it every day. So that’s why I always buy shoes with Velcro.” These statements above are from children with a mitochondrial disorder and their parents. Children with a mitochondrial disorder and their families may come across many challenges and barriers in their daily lives. Generally, the disease can be labelled as progressive, as in 74% of the disorders the prognosis is that children die before the age of 10 years1, 2. In addition, due to the progressiveness of the mitochondrial disorder, children constantly have to adapt their occupational performance to their (dis)abilities. Therefore, it is of high value to keep in mind what is important to the child when it comes to quality of life, occupational engagement, and participation as being able to perform meaningful activities is an important determinant for health and wellbeing of children3-5. This might deserve even more attention when participation is being threatened by a disorder that has such a huge impact on daily activities. In order to address individual relevant activities in health care, we need to unravel which activities are important for the individual child and assess the current quality of performance of these activities. This information should give directions to develop tailor-made interventions fitting with the more participation-focused approach on health, which requires a shift in perspective and values: from promoting doing things “normally, correctly, nicely or independently” to promoting “doing things that matter”6. Therefore, the overall objective of the studies of this thesis is to investigate how to identify and measure meaningful everyday activities of children with a mitochondrial disorder in a reliable, valid and responsive way, in order to contribute to better person-centred health care for this complex, heterogenic group of children. This first chapter provides an overview of the consequences for the child
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