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


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.

SUBMITTER: McKinnon CT 

PROVIDER: S-EPMC7076980 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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

McKinnon Clare T CT   White Jennifer H JH   Morgan Prue E PE   Antolovich Giuliana C GC   Clancy Catherine H CH   Fahey Michael C MC   Harvey Adrienne R AR  

BMC pediatrics 20200317 1


<h4>Background</h4>To explore the lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy.<h4>Methods</h4>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 adoles  ...[more]

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