PRPP-ASSESSMENT BASED ON PARENT-PROVIDED VIDEOS 139 6 Cycle 2: Improving the feasibility of the process of gaining video material in line with GDPR. Based on the written feedback of cycle 1, the instructions were further clarified and made more concise. The transfer method needed to be digitally safe and in line with GDPR, informing other persons that were captured on the video material. Therefore, consent form for people who were captured on the video but were not the subject of study was added to the instructions. To achieve feasibility, the parent should be able to videotape, store, and transfer the video, and the OT should then be able to watch this video in a safe surrounding. The arQive medium showed most potential, as parents were able to upload media files (videos, photos, and/or text) and professionals could be assigned to specific videos and was added to the instructions. Two weeks before the OT appointment in the hospital parents received an e-mail with the invitation, the instructions, the questionnaire, and the form to inform other people. Videos were uploaded by parents on arQive. Parents were interviewed after the appointment using a semi-structured interview, which was analyzed by content analysis (Hsieh & Shannon, 2005). Topics were the instructions and questionnaire, the feasibility of making videos, choices of activity, and the ecological validity of the filmed activities. After three interviews, two with parents successful in uploading videos and one parent who was not, enough information was collected to start a new cycle with improvements. Analysis resulted in three themes: the process of gaining video material, the content of video material, and the added value of video material. Appendix 1 gives an in-depth report on the results. In summary, all parents acknowledged the importance of the video material to get a good understanding of everyday life, and were motivated. One parent stated that it was not clear to her how to transfer the videos. Parents stated that the instructions were long, and it was not clear what was necessary for care or for research. Also, parents experienced problems with storage capacity. Therefore, another cycle was started to improve the process. Cycle 3: Further improve the feasibility of the process of gaining video material. Based on the outcomes of cycle 2, the forms were made more concise, and the process was split into an instruction for the usual care and an invitation for participation in research. The invitation to take part on the research was given during the visit to the hospital. In the meanwhile, arQive invented an app to directly film from the phone or tablet, which made storage capacity on a tablet or phone and transferring files redundant. Because of a low referral rate of patients with mitochondrial disease in the hospital during the inclusion period, a nearby rehabilitation center linked to special education responded positively to the request to collaborate to reach more
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