Exploring the perioperative experiences of youth undergoing cardiac surgery: A qualitative needs assessment for...

One in five children who undergo cardiac surgery report experiencing moderate to severe pain lasting more than 3 months after surgery which has a significant impact on quality of life. iCanCope with PostOperative Pain ("iCanCope POP") is a smartphone app that provides adolescents with evidence-based strategies to manage postoperative pain. The goal of this study was to explore the unique needs and pain-management experiences of youth undergoing cardiac surgery to inform the development of a tailored iteration of iCanCope POP.

A descriptive qualitative design using semi-structured interviews and focus groups was conducted with adolescents ages 12-18 who had received cardiac surgery, caregivers of youth undergoing cardiac surgery, and interdisciplinary healthcare providers (HCPs). Qualitative data were inductively and deductively coded using a content analysis approach to outline participants' pain management experiences and perspectives on the iCanCope POP app.

14 interviews and 1 focus group were completed with 6 children, 6 parents, and 12 HCPs (n = 24 participants). Content analysis resulted in 3 key categories: 1. Riding the rollercoaster of the surgical journey (e.g., ups and downs of pre- and post-operative phases); 2. Postoperative pain experience (e.g., tubes, technologies, and devices; pain management strategies); and 3. App feedback (e.g., usefulness, appropriateness, suggested modifications).

Participants reported significant challenges during the perioperative pediatric cardiac surgery journey and identified potential opportunities for a tailored mobile self-management app to improve their surgical experience. Future research should use these perspectives to inform a new iteration of the iCanCope POP app for youth undergoing cardiac surgery.