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.

中文翻译：

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脑瘫儿童和青少年慢性疼痛和运动障碍的生活经历


探讨脑瘫儿童和青少年慢性疼痛和运动障碍的生活经历。进行了收敛并行混合方法设计。首先，对能够自我报告生活质量的参与者进行了定量横断面研究。这项研究描述了疼痛的长期性、强度、身体部位和生活质量。其次，对一部分患有慢性疼痛的儿童和青少年进行了半结构化访谈。 25 名儿童和青少年参加了这项横断面研究，其中 23 名经历了慢性疼痛，13 名经历了中等强度。疼痛通常位于多个身体区域 (6/21)，没有检测到生活质量结果的趋势。八人参加了半结构化访谈，其中确定了三个关键主题，包括“运动障碍的生活”、“慢性疼痛的现实挑战”和“仍在学习管理疼痛和运动障碍的策略”。能够自我报告患有慢性疼痛的脑瘫和运动障碍儿童和青少年的比例很高。患有慢性疼痛和运动障碍对身体和情感的影响存在一定范围，影响程度从较小到较大。儿童和青少年可能受益于生物心理社会模型内有针对性的慢性疼痛教育和管理。