The Lived Experience of Chronic Pain and Dyskinesia in Children and Adolescents with Cerebral Palsy

Overview

Journal BMC Pediatr

Publisher Biomed Central

Specialty Pediatrics

Date 2020 Mar 19

PMID 32183802

Citations 6

Authors

Clare T McKinnon

Jennifer H White

Prue E Morgan

Giuliana C Antolovich

Catherine H Clancy

Michael C Fahey

Adrienne R Harvey

Affiliations

Soon will be listed here.

Abstract

Background: To explore the lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy.

Methods: A convergent parallel mixed methods design was undertaken. First, a quantitative cross-sectional study of participants able to self-report their quality of life was undertaken. This study characterised pain chronicity, intensity, body locations, and quality of life. Second, semi-structured interviews were undertaken with a subset of children and adolescents experiencing chronic pain.

Results: Twenty-five children and adolescents took part in the cross-sectional study, 23 of whom experienced chronic pain and 13 of moderate intensity. Pain was often located in multiple bodily regions (6/21), with no trends in quality of life outcomes detected. Eight participated in semi-structured interviews, which identified three key themes including 'lives embedded with dyskinesia', 'real world challenges of chronic pain', and 'still learning strategies to manage their pain and dyskinesia'.

Conclusions: A high proportion of children and adolescents with cerebral palsy and dyskinesia who were able to self-report experienced chronic pain. The physical and emotional impacts of living with chronic pain and dyskinesia existed along a spectrum, from those with lesser to greater extent of their impacts. Children and adolescents may benefit from targeted chronic pain education and management within bio-psychosocial models.

Citing Articles

Navigating diagnostic uncertainty in children's chronic lower limb pain: A qualitative study of management strategies using vignette-based focus groups.

Coventry J, Welch J, Pacey V, Ta B, Sturgiss E, Smith M J Foot Ankle Res. 2025; 18(1):e70032.

PMID: 40042426 PMC: 11881608. DOI: 10.1002/jfa2.70032.

Coping in youth living with chronic pain: A systematic review of qualitative evidence.

Woodgate R, Bell A, Petrasko J, Neilson C, Ayeni O Can J Pain. 2025; 9(1):2455494.

PMID: 40012718 PMC: 11864317. DOI: 10.1080/24740527.2025.2455494.

Children with Cerebral Palsy and Their Parents Have Different Experiences of Pain Management: A Qualitative Study.

Rinde E, Anderzen-Carlsson A, Jahnsen R, Andersen R Children (Basel). 2024; 11(9).

PMID: 39334588 PMC: 11429622. DOI: 10.3390/children11091055.

Chronic pain in children and young people with cerebral palsy: a narrative review of challenges, advances, and future directions.

Harvey A, Smith N, Smith M, Ostojic K, Berryman C BMC Med. 2024; 22(1):238.

PMID: 38862988 PMC: 11167894. DOI: 10.1186/s12916-024-03458-0.

A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments.

France E, Uny I, Turley R, Thomson K, Noyes J, Jordan A Cochrane Database Syst Rev. 2023; 10:CD014873.

PMID: 37795766 PMC: 10552070. DOI: 10.1002/14651858.CD014873.pub2.

References

Hadjistavropoulos T, Craig K, Duck S, Cano A, Goubert L, Jackson P . A biopsychosocial formulation of pain communication. Psychol Bull. 2011; 137(6):910-939. DOI: 10.1037/a0023876. View

Krefting L . Rigor in qualitative research: the assessment of trustworthiness. Am J Occup Ther. 1991; 45(3):214-22. DOI: 10.5014/ajot.45.3.214. View

Gatchel R, Peng Y, Peters M, Fuchs P, Turk D . The biopsychosocial approach to chronic pain: scientific advances and future directions. Psychol Bull. 2007; 133(4):581-624. DOI: 10.1037/0033-2909.133.4.581. View

McKinnon C, Meehan E, Harvey A, Antolovich G, Morgan P . Prevalence and characteristics of pain in children and young adults with cerebral palsy: a systematic review. Dev Med Child Neurol. 2018; 61(3):305-314. DOI: 10.1111/dmcn.14111. View

White-Koning M, Arnaud C, Dickinson H, Thyen U, Beckung E, Fauconnier J . Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy. Pediatrics. 2007; 120(4):e804-14. DOI: 10.1542/peds.2006-3272. View

Jethwa A, Mink J, Macarthur C, Knights S, Fehlings T, Fehlings D . Development of the Hypertonia Assessment Tool (HAT): a discriminative tool for hypertonia in children. Dev Med Child Neurol. 2010; 52(5):e83-7. DOI: 10.1111/j.1469-8749.2009.03483.x. View

Chaleat-Valayer E, Roumenoff F, Bard-Pondarre R, Ganne C, Verdun S, Lucet A . Pain coping strategies in children with cerebral palsy. Dev Med Child Neurol. 2019; 61(11):1329-1335. DOI: 10.1111/dmcn.14204. View

Love S, Gibson N, Smith N, Bear N, Blair E . Interobserver reliability of the Australian Spasticity Assessment Scale (ASAS). Dev Med Child Neurol. 2016; 58 Suppl 2:18-24. DOI: 10.1111/dmcn.13000. View

Blackman J, Svensson C, Marchand S . Pathophysiology of chronic pain in cerebral palsy: implications for pharmacological treatment and research. Dev Med Child Neurol. 2018; 60(9):861-865. DOI: 10.1111/dmcn.13930. View

10.

Castle K, Imms C, Howie L . Being in pain: a phenomenological study of young people with cerebral palsy. Dev Med Child Neurol. 2007; 49(6):445-9. DOI: 10.1111/j.1469-8749.2007.00445.x. View

11.

Shevell M, Dagenais L, Hall N . The relationship of cerebral palsy subtype and functional motor impairment: a population-based study. Dev Med Child Neurol. 2009; 51(11):872-7. DOI: 10.1111/j.1469-8749.2009.03269.x. View

12.

Morrow A, Hayen A, Quine S, Scheinberg A, Craig J . A comparison of doctors', parents' and children's reports of health states and health-related quality of life in children with chronic conditions. Child Care Health Dev. 2011; 38(2):186-95. DOI: 10.1111/j.1365-2214.2011.01240.x. View

13.

Himmelmann K, McManus V, Hagberg G, Uvebrant P, Krageloh-Mann I, Cans C . Dyskinetic cerebral palsy in Europe: trends in prevalence and severity. Arch Dis Child. 2009; 94(12):921-6. DOI: 10.1136/adc.2008.144014. View

14.

Westbom L, Rimstedt A, Nordmark E . Assessments of pain in children and adolescents with cerebral palsy: a retrospective population-based registry study. Dev Med Child Neurol. 2017; 59(8):858-863. DOI: 10.1111/dmcn.13459. View

15.

Lumsden D, Gimeno H, Tustin K, Kaminska M, Lin J . Interventional studies in childhood dystonia do not address the concerns of children and their carers. Eur J Paediatr Neurol. 2015; 19(3):327-36. DOI: 10.1016/j.ejpn.2015.01.003. View

16.

Bieri D, Reeve R, Champion D, Addicoat L, Ziegler J . The Faces Pain Scale for the self-assessment of the severity of pain experienced by children: development, initial validation, and preliminary investigation for ratio scale properties. Pain. 1990; 41(2):139-150. DOI: 10.1016/0304-3959(90)90018-9. View

17.

Hicks C, von Baeyer C, Spafford P, van Korlaar I, Goodenough B . The Faces Pain Scale-Revised: toward a common metric in pediatric pain measurement. Pain. 2001; 93(2):173-183. DOI: 10.1016/S0304-3959(01)00314-1. View

18.

Hidecker M, Paneth N, Rosenbaum P, Kent R, Lillie J, Eulenberg J . Developing and validating the Communication Function Classification System for individuals with cerebral palsy. Dev Med Child Neurol. 2011; 53(8):704-10. PMC: 3130799. DOI: 10.1111/j.1469-8749.2011.03996.x. View

19.

Smith J, Osborn M . Interpretative phenomenological analysis as a useful methodology for research on the lived experience of pain. Br J Pain. 2015; 9(1):41-2. PMC: 4616994. DOI: 10.1177/2049463714541642. View

20.

Waters E, Davis E, Mackinnon A, Boyd R, Graham H, Lo S . Psychometric properties of the quality of life questionnaire for children with CP. Dev Med Child Neurol. 2007; 49(1):49-55. DOI: 10.1017/s0012162207000126.x. View