Perceive, Recall, Plan and Perform (PRPP)-Assessment Based on Parent-Provided Videos of Children with Mitochondrial Disorder: Action Design Research on Implementation Challenges

Physical & Occupational Therapy In Pediatrics, vol. 43, pp. 74–92

Abstract

AIMS: Performing the Perceive, Recall, Plan and Perform (PRPP)-Assessment, using video material of everyday life, seems sensible to lower the patient burden, enhance ecological validity, and provide care at a distance. However, receipt of adequate video material is not self-evident and assessing videos can be challenging. Therefore, this study aims to optimize the process of gaining video material and to optimize the PRPP-Assessment based on parent-provided videos. METHODS: An action design research method was used, focusing on implementation of the PRPP-Assessment based on parent-provided videos within the care of children with a mitochondrial disorder or similar symptoms. RESULTS: Five cycles were conducted. To receive input, the cycles used videos of nine children performing activities, written feedback, and semi-structured interviews and focus groups comprising parents (n = 13), a teacher (n = 1), occupational therapists (n = 16), and other professionals (n = 2) . This led to successful implementation of the PRPP-Assessment. General lessons were learned on (1) instructing parents; (2) handling video material; (3) PRPP-Assessment based on parent-provided videos; and (4) PRPP-Assessment of children (with limited functional abilities). CONCLUSIONS: Lessons learned should be implemented in practice and are incorporated into a manual to guide the implementation of video-based observations with PRPP-Assessment in practice.

Authors 6

1. Marieke Rothuizen-Lindenschot corresponding

   HAN University of Applied Sciences · Radboud University Nijmegen · Radboud University Medical Center · Radboud Institute for Health Sciences

   Affiliation as printed

   Department of IQ Healthcare, Radboud Institute for Health Sciences, Nijmegen, The Netherlands

   Department of Occupational Therapy, HAN University of Applied Sciences, Nijmegen, The Netherlands

   Department of Rehabilitation, Radboud University Medical Center, Nijmegen, The Netherlands

   Research Group Neurorehabilitation, HAN University of Applied Sciences, Nijmegen, The Netherlands

   Department of IQ Healthcare, Radboud Institute for Health Sciences, Nijmegen, The Netherlands; Department of Occupational Therapy, HAN University of Applied Sciences, Nijmegen, The Netherlands; Department of Rehabilitation, Radboud University Medical Center, Nijmegen, The Netherlands

2. Imelda J. M. de Groot

   Radboud University Medical Center

   Affiliation as printed

   Department of Rehabilitation, Radboud University Medical Center, Nijmegen, The Netherlands

3. Maria W. G. Nijhuis–van der Sanden

   Radboud University Nijmegen · Radboud University Medical Center · Radboud Institute for Health Sciences

   Affiliation as printed

   Department of IQ Healthcare, Radboud Institute for Health Sciences, Nijmegen, The Netherlands

   Department of Rehabilitation, Radboud University Medical Center, Nijmegen, The Netherlands

   Department of IQ Healthcare, Radboud Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rehabilitation, Radboud University Medical Center, Nijmegen, The Netherlands

4. Esther M. J. Steultjens

   HAN University of Applied Sciences

   Affiliation as printed

   Department of Occupational Therapy, HAN University of Applied Sciences, Nijmegen, The Netherlands

   Research Group Neurorehabilitation, HAN University of Applied Sciences, Nijmegen, The Netherlands

5. Maud J. L. Graff

   Radboud University Nijmegen · Radboud University Medical Center · Radboud Institute for Health Sciences

   Affiliation as printed

   Department of IQ Healthcare, Radboud Institute for Health Sciences, Nijmegen, The Netherlands

   Department of Rehabilitation, Radboud University Medical Center, Nijmegen, The Netherlands

   Department of IQ Healthcare, Radboud Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rehabilitation, Radboud University Medical Center, Nijmegen, The Netherlands

6. Saskia Koene Aachen Department of Clinical Genetics

   Leiden University · Radboud University Nijmegen · Leiden University Medical Center

   Affiliation as printed

   Department of Clinical Genetics, Leiden University Medical Centre, Leiden, The Netherlands

   Department of Pediatrics, Radboud Center for Mitochondrial Medicine, Nijmegen, The Netherlands

   Department of Clinical Genetics, Leiden University Medical Centre, Leiden, The Netherlands; Department of Pediatrics, Radboud Center for Mitochondrial Medicine, Nijmegen, The Netherlands