Department of Physiotherapy, Monash University, PO Box 527, Frankston, 3199, Victoria, Australia.
Neurodisability & Rehabilitation, Murdoch Children's Research Institute, 50 Flemington Rd, Parkville, 3052, Victoria, Australia.
BMC Pediatr. 2020 Mar 17;20(1):125. doi: 10.1186/s12887-020-2011-8.
To explore the lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy.
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.
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'.
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.
探索脑瘫儿童和青少年慢性疼痛和运动障碍的生活体验。
采用汇聚平行混合方法设计。首先，对能够自我报告生活质量的参与者进行了定量的横断面研究。本研究描述了疼痛的慢性、强度、身体部位和生活质量。其次，对经历慢性疼痛的一部分儿童和青少年进行了半结构式访谈。
25 名儿童和青少年参加了横断面研究，其中 23 名患有慢性疼痛，13 名疼痛强度为中度。疼痛通常位于多个身体部位（6/21），没有发现生活质量结果的趋势。8 人参加了半结构式访谈，确定了三个关键主题，包括“生活中嵌入运动障碍”、“慢性疼痛的现实世界挑战”和“仍在学习管理疼痛和运动障碍的策略”。
能够自我报告的脑瘫和运动障碍儿童和青少年中，有相当比例的人患有慢性疼痛。与慢性疼痛和运动障碍共存的身体和情绪影响存在于一个连续体上，从影响较小到较大的程度。儿童和青少年可能受益于生物心理社会模式下的针对性慢性疼痛教育和管理。
