"Pain is one piece of a complex jigsaw puzzle" - experiences of raising a child with cerebral palsy who has pain

Elisabeth Rønning Rinde; Agneta Anderzén-Carlsson; Reidun Birgitta Jahnsen; Randi Dovland Andersen

doi:10.1080/09638288.2023.2290199

"Pain is one piece of a complex jigsaw puzzle" - experiences of raising a child with cerebral palsy who has pain

Disabil Rehabil. 2023 Dec 9:1-9. doi: 10.1080/09638288.2023.2290199. Online ahead of print.

Authors

Elisabeth Rønning Rinde^{1

2}, Agneta Anderzén-Carlsson^{3

4}, Reidun Birgitta Jahnsen^{2

5}, Randi Dovland Andersen^{2

6}

Affiliations

¹ Division of Habilitation, Telemark Hospital Trust, Skien, Norway.
² Research Center for Habilitation and Rehabilitation Services and Models (CHARM), Department of Public Health, Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway.
³ University Health Care Research Centre, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
⁴ Faculty of Health and Social Sciences, Inland Norway University of Applied Sciences, Elverum, Norway.
⁵ NorCP, Department of Clinical Neurosciences for Children, Oslo University Hospital, Oslo, Norway.
⁶ Department of Research, Telemark Hospital Trust, Skien, Norway.

PMID: 38069685
DOI: 10.1080/09638288.2023.2290199

Abstract

Purpose: To explore experiences of parenting a child with CP and pain.Method: Fourteen mothers and one father of children (9-16) with CP were included. All children had pain regularly, but the frequency and intensity of their pain experiences varied. Their motor function varied from GMFCS level I to V. Cognitive abilities varied from normal to moderate cognitive deficits. All children could express themselves verbally. Semi structured individual interviews were carried out, and results were developed using inductive thematic analysis.Results: The analysis resulted in the main theme "My child's pain is just one piece of a complex jigsaw puzzle". The main theme was developed by four mutually exclusive, but related themes: "My child's struggle burdens me", "Pain and CP direct our everyday life", "I want to be in control, but cannot always be" and "We are the only ones who understand the complexity".Conclusion: Parents of children with CP experience pain as one aspect of a bigger picture. They need help and support to cope with their child's pain, and professional helpers need to address the complexity pain is a part of.IMPLICATIONS FOR REHABILITATIONParents of children with cerebral palsy (CP) experience their child's pain as one piece in a jigsaw puzzle, and counseling needs to address the complexity rather than the separate parts of the picture.Health professionals should support parents in evaluation and management of their child's pain, as a feeling of competence in pain management is important to reduce parental stress.Health professionals should inform themselves about the life situation of parents whose child with CP has pain, and encourage them to seek practical support and apply for relevant support schemes that can make their everyday life easier.Parents of children with CP should be encouraged to take part in a diagnosis-specific support group, where they can meet with others in a similar situation, in order to reduce their feeling of being alone with their challenges.

Keywords: Childhood cerebral palsy; lived experience; pain; parenting.