Exploring the peri-operative experiences of youth undergoing cardiac surgery: A qualitative needs assessment for tailoring a mobile self-management app

Introduction: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 Post-Operative 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.Methods: 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.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.Results: 14 interviews and 1 focus group were completed with 6 children, 6 parents, and 12 healthcare providers (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. Post-operative pain experience (e.g.tubes, technologies and devices; pain management strategies); and 3. App feedback (e.g.usefulness, appropriateness, suggested modifications).Discussion/Conclusion: Participants reported significant challenges during the peri-operative 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.