Leveraging Parent Pain Perspectives to Improve Pain Practices for Children with Medical Complexity.

Purpose: Children with medical complexity (MC) must rely on others to notice and address pain. Parents are aware of child pain behaviors and can serve as reliable proxy reporters. Thus, there is a critical need to understand parent perspectives to improve pain practices.

Design: Individual interviews were used as a data collection method in this qualitative study.

Methods: Participants were recruited via mail and social media postings. Interviews were audio-recorded and transcribed verbatim. Transcribed documents were imported to NVIVO for qualitative analysis. Conventional and directed approaches to qualitative content analysis were used.

Results: From the data analysis, major themes included: pain experiences, confidence in caregivers, parents are partners, proactive communication, and a spontaneous theme, "they can hear us." Emotional pain and challenges identifying the source pain were identified as sub-themes of pain experiences.

Conclusions: Parents in this study shared methods helpful to identifying pain in their children, as well as suggestions for discussing pain with caregivers. Priorities for future research include identifying methods for sharing pain information that are thorough, but do not burden parents or providers. Researchers should also determine how parents and caregivers can partner to identify and address pain in children with MC. Going forward, conversations about pain should be a key part of any admission assessment or first encounter. As pain episodes among children with MC can be complex and may not always be re-created in front of a provider, nurses may advise parents to take photos or videos to share with caregivers.