CHAPTER 6 140 Table 2 Overall lessons learned ADR-Step Aim Cycle 1) Problem Analysis 2) Develop Improvement Optimizing the process of gaining video material resulting in feasible video material for assessing the everyday functioning of children with mitochondrial disorders 1: improving the instruction to parents in order to collect adequate video material Instructions did not result in feasible video material Adapting existing written instruction & establish short questionnaire to gather parental information 2: improving the feasibility of the process of gaining video material and making it ethically approved The process must be digital safe and ethically approved (in line GDPR. Transfer needs to be easy. A form was added to give to other persons that were videotaped but not subject of study. The medium arQive was found to be a digital safe way to transfer the videos. 3: further improve the feasibility of the process of gaining video material Clarification on the difference between ‘usual care’ and ADR was needed. Problems with storage and usage of arQive needed to be solved. Instructions were refined based on cycle 2. Invite for care and research were split. arQive invented an app to directly film from the phone or tablet. Adequate appliance of the PRPP-Assessment based on video material by OTs 4: identify challenges when assessing children’s performance based on parent-provided videos with the PRPP-Assessment It is unknown which challenges OTs experience when scoring suitable video material. Not yet possible; first more data collection and analysis necessary 5: identify and overcome remaining challenges after training based on cycle 4 OTs find it difficult to score criteriumbased and rule out overall knowledge about normal developmental. A refresher training for pediatric OTs was designed by three PRPPexperts based on cycle 4. ADR: action design research; GDPR: General Data Protection Regulation; OT: Occupational Therapist; PRPP-Assessment: Perceive, Recall, Plan and Perform System of Task Analysis; PT: Physical Therapist
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