Caregiver perspectives of managing chronic pain in children and adolescents with dyskinetic and mixed dyskinetic/spastic CP with communication limitations

Issue title: Cerebral Palsy

Guest editors: Deborah Gaebler-Spira, Michael Green and Heakyung Kim

Article type: Research Article

Authors: McKinnon, Clare^{a; b; *} | White, Jenni^d | Harvey, Adrienne^a | Antolovich, Giuliana^{a; c} | Morgan, Prue^b

Affiliations: [a] Neurodisability & Rehabilitation, Murdoch Children’s Research Institute, Parkville, Victoria, Australia | [b] Department of Physiotherapy, Monash University, Frankston, Victoria, Australia | [c] Neurodevelopment & Disability, The Royal Children’s Hospital Melbourne, Parkville, Victoria, Australia | [d] National Ageing Research Institute, Parkville, Victoria, Australia

Correspondence: [*] Corresponding author: Clare McKinnon, Neurodisability & Rehabilitation, Murdoch Children’s Research Institute, 50 Flemington Rd, Parkville, Victoria, 3052, Australia. Tel.: +61 03 8341 6200; E-mail: clare.mckinnon@mcri.edu.au.

Abstract: PURPOSE:Caregivers provide unique insights into managing chronic pain in children and adolescents with dyskinetic and mixed dyskinetic/spastic cerebral palsy with communication limitations. This study explored the personal challenges caregivers face in supporting their child’s everyday pain management, including barriers and facilitators to effective chronic pain management. METHODS:Semi-structured interviews were undertaken with ten caregivers (all mothers) of children with either dyskinetic or mixed dyskinetic/spastic cerebral palsy. All children had chronic pain (> 3 months), were aged from 5 to 15 years, had significant functional limitations, and had either limited or no capacity to self-report their pain. Interpretative phenomenological analysis was used to explore caregivers’ subjective experiences of managing their child’s chronic pain within family, school, and healthcare contexts. RESULTS:Five superordinate themes emerged: 1. the continual challenge of problem solving pain and dyskinesia; 2. the pursuit of a solution; 3. unfulfilled preferences within pain management; 4. all-encompassing effects on families; and 5. the ongoing impacts of pain and dyskinesia with age. CONCLUSION:There is a need for structured pain education and resources targeted towards caregivers and support workers that account for the complex overlay of dyskinesia. There is a further need to ensure caregiver preferences for non-pharmacological pain treatments are met within family-centred care models.

Keywords: Pain, cerebral palsy, dyskinesia

DOI: 10.3233/PRM-200770

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 15, no. 1, pp. 69-81, 2022