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More than just having fun! Understanding the experience of involvement in physical activity of adolescents living with cerebral palsy
Kilgour, Gaela Stott, Ngaire Susan Steele, Michael Adair, Brooke Hogan, Amy Imms, Christine
Kilgour, Gaela
Stott, Ngaire Susan
Steele, Michael
Adair, Brooke
Hogan, Amy
Imms, Christine
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 REHABILITATION
• Adolescents 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, participation, physical activity, cerebral palsy, enjoyment, adolescents, parents
Date
2024
Type
Journal article
Journal
Disability and Rehabilitation
Book
Volume
46
Issue
15
Page Range
3396-3407
Article Number
ACU Department
School of Allied Health
Faculty of Health Sciences
Faculty of Health Sciences
Collections
Relation URI
Source URL
Event URL
Open Access Status
Published as ‘gold’ (paid) open access
License
CC BY-NC-ND 4.0
File Access
Open
Notes
© 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent.