The lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy

Clare T. McKinnon, Jennifer H. White, Prue E. Morgan, Giuliana C. Antolovich, Catherine H. Clancy, Michael C. Fahey, Adrienne R. Harvey

Research output: Contribution to journalArticleResearchpeer-review

3 Citations (Scopus)

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.

Original languageEnglish
Article number125
Number of pages12
JournalBMC Pediatrics
Volume20
Issue number1
DOIs
Publication statusPublished - 17 Mar 2020

Keywords

  • Cerebral palsy
  • Children
  • Dyskinesia
  • Pain

Cite this