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

References

• Imms C, Granlund M, Wilson PH, et al. Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability. Dev Med Child Neurol. 2017;59(1):16–25. doi: 10.1111/dmcn.13237.
   PubMed Web of Science ®Google Scholar
• Imms C, Adair B, Keen D, et al. Participation’: a systematic review of language, definitions, and constructs used in intervention research with children with disabilities. Dev Med Child Neurol. 2016;58(1):29–38. doi: 10.1111/dmcn.12932.
   PubMed Web of Science ®Google Scholar
• Kilgour G, Adair B, Stott NS, et al. Do physical activity interventions influence subsequent attendance and involvement in physical activities for children with cerebral palsy: a systematic review. Disabil Rehabil. 2022;44(9):1682–1698. doi: 10.1080/09638288.2021.1909151.
   PubMed Web of Science ®Google Scholar
• Quartermaine JR, Rose TA, Auld ML, et al. Participation measures that evaluate attendance and involvement for young people aged 15 to 25 years with cerebral palsy: a systematic review. Disabil Rehabil. 2023;2023:1–17. doi: 10.1080/09638288.2023.2207042.
   Google Scholar
• Liao Y-T, Hwang A-W, Liao H-F, et al. Understanding the participation in home, school, and community activities reported by children with disabilities and their parents: a pilot study. Int J Environ Res Public Health. 2019;16(12):2217. doi: 10.3390/ijerph16122217.
   PubMed Web of Science ®Google Scholar
• Adair B, Ullenhag A, Rosenbaum P, et al. Measures used to quantify participation in childhood disability and their alignment with the family of participation-related constructs: a systematic review. Dev Med Child Neurol. 2018;60(11):1101–1116. doi: 10.1111/dmcn.13959.
   PubMed Web of Science ®Google Scholar
• Martin Ginis KA, Evans MB, Mortenson WB, et al. Broadening the conceptualization of participation of persons with physical disabilities: a configurative review and recommendations. Arch Phys Med Rehabil. 2017;98(2):395–402. doi: 10.1016/j.apmr.2016.04.017.
   PubMed Web of Science ®Google Scholar
• Shirazipour CH, Evans MB, Leo J, et al. Program conditions that foster quality physical activity participation experiences for people with a physical disability: a systematic review. Disabil Rehabil. 2020;42(2):147–155. doi: 10.1080/09638288.2018.1494215.
   PubMed Web of Science ®Google Scholar
• Resch C, Van Kruijsbergen M, Ketelaar M, et al. Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties. Dev Med Child Neurol. 2020;62(4):434–444. doi: 10.1111/dmcn.14465.
   PubMed Web of Science ®Google Scholar
• Gates PE, Banks D, Johnston TE, et al. Randomized controlled trial assessing participation and quality of life in a supported speed treadmill training exercise program vs. a strengthening program for children with cerebral palsy. J Pediatr Rehabil Med. 2012;5(2):75–88. doi: 10.3233/PRM-2012-0199.
   PubMedGoogle Scholar
• Reedman SE, Johnson E, Sakzewski L, et al. Sedentary behavior in children with cerebral palsy between 1.5 and 12 years: a longitudinal study. Pediatr Phys Ther. 2020;32(4):367–373. doi: 10.1097/PEP.0000000000000740.
   PubMed Web of Science ®Google Scholar
• Verschuren O, Peterson MD, Balemans AC, et al. Exercise and physical activity recommendations for people with cerebral palsy. Dev Med Child Neurol. 2016;58(8):798–808. doi: 10.1111/dmcn.13053.
   PubMed Web of Science ®Google Scholar
• Schiariti V, Sauve K, Klassen AF, et al. ‘He does not see himself as being different’: the perspectives of children and caregivers on relevant areas of functioning in cerebral palsy. Dev Med Child Neurol. 2014;56(9):853–861. doi: 10.1111/dmcn.12472.
   PubMed Web of Science ®Google Scholar
• Kilgour G, Stott NS, Steele M, et al. Effects of a 12-week community-based high-level mobility program on sustained participation in physical activity by adolescents with cerebral palsy: A single subject research design study. Disabil Rehabil. 2023. doi: 10.1080/09638288.2023.2256225.
   Google Scholar
• Thompson Burdine J, Thorne S, Sandhu G. Interpretive description: a flexible qualitative methodology for medical education research. Med Educ. 2021;55(3):336–343. doi: 10.1111/medu.14380.
   PubMed Web of Science ®Google Scholar
• Thorne S. What can qualitative studies offer in a world where evidence drives decisions? Asia Pac J Oncol Nurs. 2018;5(1):43–45. doi: 10.4103/apjon.apjon_51_17.
   PubMed Web of Science ®Google Scholar
• Thorne S, Kirkham SR, MacDonald-Emes J. Interpretive description: a noncategorical qualitative alternative for developing nursing knowledge. Res Nurs Health. 1997;20(2):169–177. doi: 10.1002/(SICI)1098-240X(199704)20:2<169::AID-NUR9>3.0.CO;2-I.
   PubMed Web of Science ®Google Scholar
• Brewer KM, Harwood ML, McCann CM, et al. The use of interpretive description within kaupapa māori research. Qual Health Res. 2014;24(9):1287–1297. doi: 10.1177/1049732314546002.
   PubMed Web of Science ®Google Scholar
• Palisano RJ, Rosenbaum P, Walter S, et al. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol. 1997;39(4):214–223. doi: 10.1111/j.1469-8749.1997.tb07414.x.
   PubMed Web of Science ®Google Scholar
• Archibald MM, Caine V, Ali S, et al. What is left unsaid: an interpretive description of the information needs of parents of children with asthma. Res Nurs Health. 2015;38(1):19–28. doi: 10.1002/nur.21635.
   PubMed Web of Science ®Google Scholar
• O’Brien BC, Harris IB, Beckman TJ, et al. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245–1251. doi: 10.1097/ACM.0000000000000388.
   PubMed Web of Science ®Google Scholar
• Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–357. doi: 10.1093/intqhc/mzm042.
   PubMed Web of Science ®Google Scholar
• Guthold R, Stevens GA, Riley LM, et al. Global trends in insufficient physical activity among adolescents: a pooled analysis of 298 population-based surveys with 1· 6 million participants. Lancet Child Adolesc Health. 2020;4(1):23–35. doi: 10.1016/S2352-4642(19)30323-2.
   PubMedGoogle Scholar
• Eliasson AC, Krumlinde-Sundholm L, Rösblad B, et al. The manual ability classification system (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Dev Med Child Neurol. 2006;48(7):549–554. doi: 10.1017/S0012162206001162.
   PubMed Web of Science ®Google Scholar
• Hidecker MJC, Paneth N, Rosenbaum PL, et al. Developing and validating the communication function classification system for individuals with cerebral palsy. Dev Med Child Neurol. 2011;53(8):704–710. doi: 10.1111/j.1469-8749.2011.03996.x.
   PubMed Web of Science ®Google Scholar
• Nyquist A, Jahnsen RB, Moser T, et al. The coolest I know–a qualitative study exploring the participation experiences of children with disabilities in an adapted physical activities program. Disabil Rehabil. 2020;42(17):2501–2509. doi: 10.1080/09638288.2019.1573937.
   PubMed Web of Science ®Google Scholar
• Bragg E, Spencer NLI, Phelan SK, et al. Player and parent experiences with child and adolescent power soccer sport participation. Phys Occup Ther Pediatr. 2020;40(6):637–650. doi: 10.1080/01942638.2020.1746946.
   PubMed Web of Science ®Google Scholar
• Downs M, MacDermid J, Connelly D, et al. Current experiences and future expectations for physical activity participation: perspectives of young people with physical disabilities and their rehabilitation clinicians. Dev Neurorehabil. 2021;24(2):73–84. doi: 10.1080/17518423.2020.1771787.
   PubMed Web of Science ®Google Scholar
• Lauruschkus K, Nordmark E, Hallström I. “It’s fun, but…” children with cerebral palsy and their experiences of participation in physical activities. Disabil Rehabil. 2015;37(4):283–289. doi: 10.3109/09638288.2014.915348.
   PubMed Web of Science ®Google Scholar
• Nakamura J, Csikszentmihalyi M. The concept of flow. Flow and the foundations of positive psychology. Chicago: Springer; 2014. p. 239–263.
   Google Scholar
• McKenzie G, Willis C, Shields N. Barriers and facilitators of physical activity participation for young people and adults with childhood-onset physical disability: a mixed methods systematic review. Develop Med Child Neuro. 2021;63(8):914–924. doi: 10.1111/dmcn.14830.
   PubMed Web of Science ®Google Scholar
• Wiart L. How do we ensure sustainable physical activity options for people with disabilities? Dev Med Child Neurol. 2016;58(8):788–788. doi: 10.1111/dmcn.13100.
   PubMed Web of Science ®Google Scholar
• Eken MM, Houdijk H, Doorenbosch CAM, et al. Relations between muscle endurance and subjectively reported fatigue, walking capacity, and participation in mildly affected adolescents with cerebral palsy. Dev Med Child Neurol. 2016;58(8):814–821. doi: 10.1111/dmcn.13083.
   PubMed Web of Science ®Google Scholar
• Lindsay S. Child and youth experiences and perspectives of cerebral palsy: a qualitative systematic review. Child Care Health Dev. 2016;42(2):153–175. doi: 10.1111/cch.12309.
   PubMed Web of Science ®Google Scholar
• Kumar R, Smith M. The effect of muscle endurance and fatigue on participation in adolescents with cerebral palsy. Dev Med Child Neurol. 2016;58(8):789–789. doi: 10.1111/dmcn.13142.
   PubMed Web of Science ®Google Scholar
• Dutia I, Eres R, Sawyer SM, et al. Fatigue experienced by people with cerebral palsy: a systematic review of assessment tools and decision tree. Disabil Rehabil. 2023;2023:1–9. doi: 10.1080/09638288.2023.2205175.
   Google Scholar
• Ives B, Clayton B, Brittain I, et al. I’ll always find a perfectly justified reason for not doing it’: challenges for disability sport and physical activity in the United Kingdom. Sport Soc. 2019;2019:19.
   Google Scholar
• Wright A, Roberts R, Bowman G, et al. Barriers and facilitators to physical activity participation for children with physical disability: comparing and contrasting the views of children, young people, and their clinicians. Disabil Rehabil. 2019;41(13):1499–1507. doi: 10.1080/09638288.2018.1432702.
   PubMed Web of Science ®Google Scholar
• Lauruschkus K, Nordmark E, Hallström I. Parents’ experiences of participation in physical activities for children with cerebral palsy – protecting and pushing towards independence. Disabil Rehabil. 2017;39(8):771–778. doi: 10.3109/09638288.2016.1161841.
   PubMed Web of Science ®Google Scholar
• Atchison B-J, Goodwin DL. “My child may be ready, but I am not”: parents’ experiences of their children’s transition to inclusive fitness settings. Adapt Phys Activ Q. 2019;36(2):282–301. doi: 10.1123/apaq.2018-0101.
   PubMed Web of Science ®Google Scholar
• Martin Ginis KA, Ma JK, Latimer-Cheung AE, et al. A systematic review of review articles addressing factors related to physical activity participation among children and adults with physical disabilities. Health Psychol Rev. 2016;10(4):478–494. doi: 10.1080/17437199.2016.1198240.
   PubMed Web of Science ®Google Scholar
• Quartermaine JR, Rose TA, Auld ML, et al. Factors impacting positive and negative participation of young people with cerebral palsy: a Delphi study of consumers and health professionals. Disabil Rehabil. 2023;2023:1– 9. doi: 10.1080/09638288.2023.2194062.
   Google Scholar
• Arakelyan S, Maciver D, Rush R, et al. Family factors associated with participation of children with disabilities: a systematic review. Dev Med Child Neurol. 2019;61(5):514–522. doi: 10.1111/dmcn.14133.
   PubMed Web of Science ®Google Scholar
• Baksjoberget PE, Nyquist A, Moser T, et al. Having fun and staying active! Children with disabilities and participation in physical activity: a follow-up study. Phys Occup Ther Pediatr. 2017;37(4):347–358. doi: 10.1080/01942638.2017.1281369.
   PubMed Web of Science ®Google Scholar
• Imms C, Froude E, Adair B, et al. A descriptive study of the participation of children and adolescents in activities outside school. BMC Pediatr. 2016;16(1):84. doi: 10.1186/s12887-016-0623-9.
   PubMedGoogle Scholar
• Shikako-Thomas K, Shevell M, Lach L, et al. Are you doing what you want to do? Leisure preferences of adolescents with cerebral palsy. Dev Neurorehabil. 2015;18(4):234–240. doi: 10.3109/17518423.2013.794166.
   PubMed Web of Science ®Google Scholar
• Shimmell LJ, Gorter JW, Jackson D, et al. It’s the participation that motivates him: physical activity experiences of youth with cerebral palsy and their parents. Phys Occup Ther Pediatr. 2013;33(4):405–420. doi: 10.3109/01942638.2013.791916.
   PubMed Web of Science ®Google Scholar
• Imms C, Adair B. Participation trajectories: impact of school transitions on children and adolescents with cerebral palsy. Dev Med Child Neurol. 2017;59(2):174–182. doi: 10.1111/dmcn.13229.
   PubMed Web of Science ®Google Scholar
• King G, McDougall J, Dewit D, et al. Predictors of change over time in the activity participation of children and youth with physical disabilities. Child Health Care. 2009;38(4):321–351. doi: 10.1080/02739610903237352.
   PubMed Web of Science ®Google Scholar
• Guest L, Balogh R, Dogra S, et al. Examining the impact of a multi-sport camp for girls ages 8–11 with autism spectrum disorder. Ther Recreat J. 2017;51(2):109–126. doi: 10.18666/TRJ-2017-V51-I2-7383.
   Web of Science ®Google Scholar
• Aubert S, Brazo-Sayavera J, González SA, et al. Global prevalence of physical activity for children and adolescents; inconsistencies, research gaps, and recommendations: a narrative review. Int J Behav Nutr Phys Act. 2021;18(1):2. doi: 10.1186/s12966-021-01155-2.
   PubMed Web of Science ®Google Scholar
• Simpson K, Imms C, Keen D. The experience of participation: eliciting the views of children on the autism spectrum. Disabil Rehabil. 2022;44(9):1700–1708. doi: 10.1080/09638288.2021.1903100.
   PubMed Web of Science ®Google Scholar
• Casey A, Jones B. Using digital technology to enhance student engagement in physical education. Asia-Pac J Health, Sport Phys Educat. 2011;2(2):51–66. doi: 10.1080/18377122.2011.9730351.
   Google Scholar
• Anaby D, Avery L, Gorter JW, et al. Improving body functions through participation in community activities among young people with physical disabilities. Dev Med Child Neurol. 2020;62(5):640–646. doi: 10.1111/dmcn.14382.
   PubMed Web of Science ®Google Scholar
• Anaby DR, Law M, Feldman D, et al. The effectiveness of the pathways and resources for engagement and participation (PREP) intervention: improving participation of adolescents with physical disabilities. Dev Med Child Neurol. 2018;60(5):513–519. doi: 10.1111/dmcn.13682.
   PubMed Web of Science ®Google Scholar