PRPP-ASSESSMENT TO MEASURE CHANGE 199 8 Participants Children aged 2–18 years with a genetically confirmed mitochondrial disorder who visit the Radboud Centre for Mitochondrial Medicine for medical care were eligible for participation in the study. A prerequisite for participation was that a child wanted to improve two or more activities and did not participate in other studies. No exclusion criteria considering physical, cognitive and communication (dis)abilities were formulated to include a clinically representative sample. The aim was to include five to eight children. The treating physician sent a patient information letter to eligible children and their parents, and the parents were telephoned two weeks after sending the letter. Study design and procedure and intervention The study was conducted in five phases (figure 1). Phase 1: Baseline measurement After receiving agreement for participation, a start visit at the child’s home was conducted by the researcher (M.L.). Based on shared goal-setting, three activity goals for the intervention were chosen by the children and their parents. Goals were set with the GAS35 and instructions for videotaping the activities were discussed36. Baseline measurement with the COPM37 and General Rating Scale12 (GRS) was conducted. Combining the COPM and the GAS enables subjective and objective demonstration of goal achievement38. Figure 1 Phases of this study, showing the measurements and the triple-action approach used in the home-based intervention Waiting Period Baseline Measurement Intervention Phase Post-Intervention Measurement Scoring the Video Material Child Parents (or carer) Occupational Therapist ‘coaching’ ‘teaching’ ‘learning’ COPM, GAS, GRS Videotape each activity 3 times COPM-P, GAS, GRS, interviews Videotape activities
RkJQdWJsaXNoZXIy MjY0ODMw