More than just having fun! Understanding the experience of involvement in physical activity of adolescents living with cerebral palsy

Gaela Kilgour; Ngaire Susan Stott; Michael Steele; Brooke Adair; Amy Hogan; Christine Imms

doi:10.1080/09638288.2023.2251395

More than just having fun! Understanding the experience of involvement in physical activity of adolescents living with cerebral palsy

Disabil Rehabil. 2023 Sep 7:1-12. doi: 10.1080/09638288.2023.2251395. Online ahead of print.

Authors

Gaela Kilgour¹, Ngaire Susan Stott², Michael Steele³, Brooke Adair⁴, Amy Hogan⁵, Christine Imms⁶

Affiliations

¹ Department of Paediatrics, The University of Melbourne, Melbourne, Australia.
² Department of Surgery, The University of Auckland, Auckland, New Zealand.
³ Department of Biostatistics, Australian Catholic University, Brisbane, Australia.
⁴ Grow Strong Children's Physiotherapy, Melbourne.
⁵ Cerebral Palsy Society, New Zealand.
⁶ Department of Paediatrics, The University of Melbourne, Murdoch Children's Research Institute, Melbourne, Australia.

PMID: 37675880
DOI: 10.1080/09638288.2023.2251395

Abstract

Purpose: To explore the experiences of involvement of adolescents living with cerebral palsy, and their parents, while participating in physical activity. Understanding involvement in physical activity may be used to guide future participation.Methods: Eight adolescents (mean age 13 years 11 months, SD 1 year 6 months) with cerebral palsy participated in a New Zealand-based high-level mobility programme (HLMP) focused on running skills, twice per week for 12 weeks. The adolescents and 12 parents were interviewed before, after the 12 weeks and 9-months following the HLMP. Guided by interpretative description, 38 interviews were coded, analysed, and interpreted.Results: Four themes were: "Turning up is not enough" ("There's no point being there if you're not involved"); "In it all the way", "Changes on a dime", and "What works for me." Perceptions of involvement varied between adolescents and parents. Being "very involved" related to high levels of focus, concentration, effort; but not always enjoyment.Conclusions: Focusing on enjoyment as the key experience of involvement understates the complexity and dynamic nature of involvement. "Being involved" is not always easy and may not mean the absence of discomfort or effort. Optimising the individuals' involvement continuum during physical activity may be essential to promote lifelong participation.IMPLICATIONS FOR REHABILITATIONAdolescents living with cerebral palsy and their parents have differing perspective of involvement and utilise different strategies to encourage being and staying active.Teaching adolescents living with cerebral palsy about their involvement continuum and optimal level of involvement for each activity, context and environment could promote sustained participation.To ensure adolescents are "being involved" in physical activity, opportunities for engagement, motivation and persistence are important; enjoyment is a possible, but not essential attribute of involvement.Encouraging involvement in physical activity can be a source of family conflict from a young age therefore clinicians have a role as an essential supporter, motivator and educator.

Keywords: Involvement; adolescents; cerebral palsy; enjoyment; parents; participation; physical activity.