Pain in children with cerebral palsy: an investigation of the impact of pain, pain management, and the application of biofeedback assisted relaxation training

Background: Pain in children with cerebral palsy (CP) is poorly understood. This thesis aims to describe the current management of pain; examine pain prevalence, interference, and experience; and explore biofeedback assisted relaxation therapy (BART) via the BrightHearts application for pain management. Methods: A systematic review reported the current evidence for pain management. A cross-sectional study investigated the pain prevalence, interference, and management. A qualitative study using semi-structured interviews explored the lived experiences of pain. A mixed-methods pilot study evaluated the feasibility and acceptability of BART for chronic pain. A cross-over randomised controlled trial (RCT) compared BART and distraction therapy for procedural pain in children undergoing botulinum toxin-A (BoNT-A) injections. Results: The systematic review described interventions for pain related to hypertonia, spastic hip disease, procedural pain, and post-operative pain. Studies focused on specific interventions for CP sub-groups and pharmacologic treatments, with weak study design and limited use of validated pain measures. The cross-sectional study found that 67% of children had pain in the past week; 31% had chronic pain; pain often interfered with everyday activities; and was exacerbated by gross motor functions. Children with bilateral involvement, dyskinesia, and non-ambulatory status were at increased risk of chronic pain. Children commonly used short-acting analgesia and non-pharmacological strategies. The qualitative study emphasised the individualised experiences of pain and the profound interference on daily life. Ten children and parents reported a positive experience using BART for chronic pain, despite non-significant reductions in pain scores. The cross-over RCT found non-significant differences in pain, anxiety and fear between BART and distraction therapy. Those who used BART during their first BoNT-A treatment reported significantly less pain and anxiety during both treatments. Conclusion: Pain management is vital for children with CP. Routine assessment with validated measures is critical to identify pain early and minimise interference on physical functioning, mental health, and participation. Ongoing research guided by the biopsychosocial model of pain is needed to optimise pain management