1. The lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy
- Author
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Michael C Fahey, Clare T McKinnon, Jennifer H. White, Giuliana Antolovich, Prue Morgan, Catherine H. Clancy, and Adrienne Harvey
- Subjects
Male ,030506 rehabilitation ,medicine.medical_specialty ,Adolescent ,Cross-sectional study ,Pain ,Cerebral palsy ,03 medical and health sciences ,0302 clinical medicine ,Quality of life ,medicine ,Humans ,Child ,Children ,Dyskinesias ,Dyskinesia ,business.industry ,Lived experience ,lcsh:RJ1-570 ,Chronic pain ,lcsh:Pediatrics ,medicine.disease ,Cross-Sectional Studies ,Clinical research ,Pediatrics, Perinatology and Child Health ,Quality of Life ,Physical therapy ,Female ,Chronic Pain ,medicine.symptom ,0305 other medical science ,business ,030217 neurology & neurosurgery ,Research Article - 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.
- Published
- 2020
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