GENERAL DISCUSSION 237 9 deliver bigger gains42. Therefore, completely eliminating the parental burden of home-based training programs might be an impossible task. Nonetheless, while policy makers work on the implementation of telemedicine, we should further substantiate the evidence for home-based interventions in paediatric OT-practice and investigate how we can lower the burden for parents. This starts with designing interventions that are aware of factors that cause therapy-related stress. The factors mentioned in the “Therapy-Related Parental Stress Questionnaire”100, 123 (in Dutch Vragenlijst Ouderlijke Stress als gevolg van Therapy van het kind, therefore abbreviated with VOST) can be used in designing interventions. The VOST mentions factors as ‘tailor therapy to child’s needs’, ‘number and regularity of necessary appointments’, and ‘time needed to do the exercises at home’. These factors were recognized as during the multiple case series study parents communicated the desire for a regular appointment and the benefits of activities that needed to be performed anyway (like dressing or tying shoe laces)54. Therefore, a suggestion is to study if OT-students could play a role in lowering the burden for home-based care. For instance, by supporting or taking over the training in some moments during the week, or by collecting data necessary for measuring effectiveness. Next step: Can we make a difference for these (and other) children? This thesis aimed to contribute to tailor-made personalized, and evidence based assessment of meaningful occupational performance. Results show that children with a mitochondrial disorder are able to communicate their perspective, as long as the interviewer is able to uncover it. In addition, it resulted in knowledge on overcoming challenges in using parent-provided videos with the PRPP-Assessment. It showed that the PRPP-Assessment can be the answer to the need on assessments that are flexible enough to make personalized measurements of groups of children with different abilities possible, but are standardized and rigour enough to measure effectiveness in practice and research. As an important side-effect of the last study, the performance on several self-selected activities markedly improved in eight out of nine activities of three children, showing that we can make a difference for these children54. Taking into account that mitochondrial diseases are generally progressive, and all children included in the studies had multiple disabilities, this thesis has shown the potential for the PRPP-Assessment and for PRPP-Intervention in a home-based video coaching program for children with other diagnoses that result in multiple disabilities.
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