CHAPTER 9 236 possible without these home-based observations. Especially as children with mitochondrial disorder are known for their fluctuation in functioning105, 106, the use of video material enabled parents to capture the ‘good’ and the ‘bad’ moments, and even to keep on filming to capture the moments that give information on everyday functioning. In addition, videos allowed the child to perform the activity at the usual time, with the usual others, within their usual routine, in the usual context, with the usual materials. Therefore, I feel that using video material to conduct home-based observations or assessments should be a standard procedure in paediatric OT-practice. Using home-based assessments fits with the report of the Dutch Government called ‘the right care at the right place’4 which states that care can be provided (closer to) home and suggests (among others) the use of e-health. E-health, or telemedicine (literally translated ‘healing at a distance’) represents the use of technology in healthcare and has gained interest of some health professionals in paediatric care throughout the past decades107. However, the pandemic of COVID-19 has accelerated these developments and served as an impetus for care-at-distance108-110. Although there are still several challenges to implement telehealth as a ‘standard’ in health care especially on the level of policy and finance111, 112, there are several important benefits of home-based care, specifically for OT-practice. Occupational therapists’ core business is to enable people in performing their meaningful activities in everyday life, which identifies three key-elements: clientcentred, occupation-based, and context-based47, 48, 66, 67. The benefits of home- based care become evident in two main phases of the OT-process; during the stage of assessment and during the stage of intervention. To optimize assessment, it is desirable to observe and assess in the actual living environment as this contributes to the ecological validity113. Whereas using video material within the OT-process seems like a ‘quick win’ for ecological valid assessments with a low burden, home-based care does not automatically lead to a lower burden then usual care. It has been shown that providing home-based interventions can be challenging for the child, the parents and the OTs114. During recruitment of the last study of this thesis, we experienced that a lot of parents declined participation due to overburdened family situations54. They felt that a home-based training program was not feasible to fit into their stressful daily lives with the care for a child with a disability. A phenomenon that has been recognized by other studies and can interfere with the successfulness of the intervention115-122, also partly observed in our multiple case series study. Beckers, Rameckers 100 indicated that whereas the intensity of the training causes stress, a successful intervention can reduce therapy-related and generic parental stress. In addition, literature shows that parent partnership within OT intervention is effective and worthwhile, and activities-based in natural environments, ‘top-down’ interventions
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