Parental perspectives on pain detection, assessment, and management in their highly dependent children with cerebral palsy: A cross-sectional study

Parents understand their children's pain, which is vital for effective management. Nurses play a significant role in providing parents with pain education. This study aimed to examine the practices and challenges that parents of highly dependent children with cerebral palsy (CP) face when managing pain at home. Design: A cross-sectional study of ninety-eight parents of children, adolescents and young people with CP completed questionnaires exploring pain intensity, home management, and their knowledge and perceptions. Results: Parents reported past moderate pain and mild present pain in their children (mean = 4.17 ± 2.8; 2.01 ± 2.79 out of 10, respectively). Parents exhibited moderate knowledge and misconceptions (mean = 27.5 ± 13.5 out of 64). Most utilized numerous non-pharmacological modalities (mean = 9.64 ± 3.7) and found them to be, at most, moderately effective (mean = 6.9 ± 3.2; 0–10). Almost all provided over-the-counter (OTC) analgesics (96 %), and 25 offered prescription analgesics. A moderation model revealed that parents who received pain education were more likely to provide prescription analgesics (OR = 14, 95 % CI 2.21–276.4), but only in parents of fully verbal children (p = 0.02). Conclusions: Parents often utilize a multimodal approach to managing their children's pain at home; however, their children frequently remain in pain. This may stem from parental knowledge gaps regarding pain detection and management. Implications for practice: Effective nursing practice involves a collaborative partnership that integrates parents' knowledge with nurses' specialized skills and current evidence-based practices. Such a partnership can ensure that parents receive reliable information, personalized education, and support to provide their children with CP pain relief measures tailored to their needs.