CHAPTER 6 136 hospital. These children were periodically evaluated by a multidisciplinary, medical, and allied health care team at Radboud Center for Mitochondrial Medicine (RCMM). Action Design Research (ADR) Process Each cycle followed the same steps (Figure 1): 1) problem analysis; 2) develop improvement; 3) implement improvement; 4) gather data on situation; and 5) analyze data. After these five steps, a new cycle was started or, when no new questions were raised, the study was finalized. Using this method, we report on the start of the study (the first cycle), as subsequent cycles were based on the results of each previous cycle. During each cycle, a log was kept by the researcher and frequently discussed with the research team to monitor progress. To start the first cycle of ADR, previous research (Lindenschot et al., 2021) indicated that the current problem was that the instructions to parents of children with a mitochondrial disorder did not lead to adequate video material, and OTs experienced challenges when using the PRPP-Assessment based on parent-provided videos. For example, completion of the criterion was not captured on the video (e.g., wanting ‘to score in soccer’ and captured on video is the child but not the goal), making it impossible to score the task and cognitive strategies criterion-referenced. Therefore, the objective of the first cycle was to improve the instructions to parents, resulting in adequate videos, solving the challenges experienced by the OTs. Figure 1 Overview of the iterative action design cycle (adapted from De Villiers, 2005) used in this research. 3. Implement improvement 4. Gather Data on situation (including improvement) 5. Analyse Data: conclude if new cycle is needed 1. Problem Analysis 2. Develop improvement 6. Finalize improvement by formulating immediate outcomes & distant outcomes
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