The Lived Experience of Pediatric Pain Management: Insights From Families and Providers

Pain represents a subjective experience that manifests with emotional and physical discomfort. In pediatric care, pain management is especially complex due to communicative limitations, which creates a unique point of entry for parents to contribute to their child's treatment process. In this study, we explored whether families' perceptions of their child's pain and preferences for treatment were aligned with healthcare providers' pain management decisions. Using narrative-informed techniques in interviews with families and healthcare providers in pediatric care settings, we analyzed areas of concordance and discordance in pain assessment and treatment priorities. Our findings show that trust is built over time through (1) consistent communication and (2) individualized care for their child's unique needs. Contrastingly, when trust is broken, families experience added stress with care. Future research should prioritize developing tools and interventions that support this collaborative model. Ultimately, these efforts aim to equalize power dynamics in the family-provider relationship by emphasizing the value of both parental understanding and medical knowledge in pediatric pain management.