Date Presented 03/22/24
Therapists and parents of children with unilateral cerebral palsy were interviewed to seek input on creating a mobile website. The interviews provided valuable information about the functionality, features, content, and naming of the website.
Primary Author and Speaker: Angela Shierk
Additional Authors and Speakers: Heather Roberts
Contributing Authors: Youstina Habeeb, Madison Trahan, Nancy Clegg, Mauricio R. Delgado, Nigar Dursan, Cigdem Cekmece, Marcin Bonikowski, Weronika Pyrzanowska, Jorge Carranza, Gabriela Granados Garcia
PURPOSE: It is unknown if an online tool is wanted by therapists and parents of individuals with unilateral cerebral palsy (UCP) to support the implementation of goal-directed home programs, and if wanted, the recommended features for the tool. Aims: To explore the experiences of therapists and parents who have implemented home programs, seek guidance on translating a paper-based home program toolbox into a mobile website, and develop the website.
DESIGN: Qualitative descriptive methodology using semi-structured interviews and thematic analysis, validated with field notes and member checking. Participants were recruited using purposeful sampling. For study inclusion, therapists and parents were required to have experience with implementing home programs and speak English. Materials and
METHOD: Participants engaged in semi-structured interviews. The interviews were transcribed verbatim, coded, and categorized into themes by three independent reviewers for triangulation. The categorical themes were cross-analyzed with field notes. A team-science, iterative approach was used to integrate the themes into the development of the mobile website.
RESULTS: Five participants were interviewed from the United States, Mexico, the United Kingdom, and Poland. Major themes included (1) shifting from paper to an electronic platform will support home program development, maintenance, and motivation, (2) videos are integral for learning, (3) preference for focusing content on activity and participation, followed by upper limb skills, (4) goals should be a core component, and (5) tracking progress and earning rewards is essential for continued motivation. The GoMove website was developed based on the identified themes.
CONCLUSIONS: Overall, these findings indicate that the development of a website to support home programs was supported by clinicians and parents of youth with CP. The research team incorporated the study findings to create the GoMove website (gomove.org)
References
Shierk, A., Jiménez-Moreno, A. C., Roberts, H., Ackerman-Laufer, S., Backer, G., Bard-Pondarre, R., Cekmece, C., Pyrzanowska, W., Vilain, C., & Delgado, M. R. (2019). Development of a Pediatric Goal-Centered Upper Limb Spasticity Home Exercise Therapy Program for Use in a Phase-III Trial of Abobotulinumtoxina (Dysport®). Physical & Occupational Therapy in Pediatrics, 39(2), 124–135. https://doi.org/10.1080/01942638.2018.1486346
Novak I. (2011). Parent experience of implementing effective home programs. Physical & Occupational Therapy in Pediatrics, 31(2), 198–213. https://doi.org/10.3109/01942638.2010.533746
Neergaard, M. A., Olesen, F., Andersen, R. S., & Sondergaard, J. (2009). Qualitative description–the poor cousin of health research?. BMC Medical Research Methodology, 9(1), 1–5. https://doi.org/10.1186/1471-2288-9-52
Johnson, R., Williams, S., Gucciardi, D., Bear, N., & Gibson, N. (2020). Can an online exercise prescription tool improve adherence to home exercise programmes in children with cerebral palsy and other neurodevelopmental disabilities? A randomized controlled trial. BMJ Open., 10(12), E040108.
