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"I have to obey my pain": children's experiences of pain burden in cerebral palsy
Division of Habilitation, Telemark Hospital Trust, Skien, Norway; Institute of Health and Society, University of Oslo, Oslo, Norway.
Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Centre.ORCID iD: 0000-0001-7352-8234
Department of Clinical Neurosciences for Children, Oslo University Hospital, Oslo, Norway; Research Center for Habilitation and Rehabilitation Models & Services (CHARM), Faculty of Medicine, University of Oslo, Oslo, Norway.
Research Center for Habilitation and Rehabilitation Models & Services (CHARM), Faculty of Medicine, University of Oslo, Oslo, Norway; Department of Research, Telemark Hospital Trust, Skien, Norway.
2024 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 46, no 6, p. 1112-1120Article in journal (Refereed) Published
Abstract [en]

PURPOSE: To explore pain experiences of children with cerebral palsy, and how it influences their everyday life.

METHOD: Fourteen children with CP between eight and seventeen years old were included, using a purposeful sampling strategy. They had different experiences of pain, and different degrees of physical and cognitive impairments. Sixteen individual semi-structured interviews were carried out, and analyzed using inductive thematic analysis.

RESULTS: Data analysis resulted in the main theme "I have to obey my pain" and four themes were identified. Experiences regarding pain varied ("My pain is mine alone"). Both pain itself and the use of cognitive strategies to cope with pain involved a mental struggle ("Pain brings me down"). The children had to make adjustments to manage their pain ("I want to participate, but I have to rest"). The most important help was to be understood, but adults also provided valuable help with interventions like stretching, medication and adjustment of activity levels ("Others can help me").

CONCLUSION: Pain was a determining feature in the lives of these children with CP. The wide variety of experiences and challenges emphasized the need for tailored management strategies developed together with each child and their parents.

IMPLICATIONS FOR REHABILITATION

  • Children with cerebral palsy had varied experiences of pain, and health professionals need to tailor their pain management approaches to the individual child.
  • Health services should offer pain education to expand children's repertoire of pain management strategies.
  • When a child's pain influences their daily activities, health services must ensure that the school is informed of the child's situation, and able to make necessary adjustments.
  • Health professionals should strive to include children's own descriptions whenever possible to make sure children feel heard and believed.
  • Even children with communicative and cognitive impairments were able to self-report when necessary adjustments in the communication situation were made.
Place, publisher, year, edition, pages
Taylor & Francis, 2024. Vol. 46, no 6, p. 1112-1120
Keywords [en]
Pain, cerebral palsy, children, interview study, lived experiences
National Category
Nursing Pediatrics
Identifiers
URN: urn:nbn:se:oru:diva-105219DOI: 10.1080/09638288.2023.2191012ISI: 000959134800001PubMedID: 36987867Scopus ID: 2-s2.0-85151966404OAI: oai:DiVA.org:oru-105219DiVA, id: diva2:1747544
Available from: 2023-03-30 Created: 2023-03-30 Last updated: 2024-05-20Bibliographically approved

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Anderzen-Carlsson, Agneta

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