Development of the booklet “A Journey through ECMO” as a tool for humanization and continuing education for family members of patients undergoing pediatric ECMO: strengthening family-centered care.

Abstract

This article highlights the importance of family-centered care in critical settings, such as the use of ECMO (extracorporeal membrane oxygenation) in neonatal and pediatric ICU patients. Given the emotional impact of hospitalization, the illustrated guidebook “A Journey Through ECMO” was developed using accessible language and a sensitive narrative to support and guide caregivers. The story of a little elephant named Otto aims to bring families closer to the procedure, the healthcare team, and the hospital environment. The methodology included its implementation in the Pediatric Cardiac ICU of Hospital Sepaco, accompanied by a specialized nursing team. Results showed improved family understanding, reduced anxiety, and strengthened trust in the team. The guide promoted greater treatment adherence, helped explain complications, and humanized the ICU experience. It is concluded that playful educational tools like this guidebook are essential to transforming the ECMO experience into a supportive, collaborative process, reinforcing humanization and family-centered care in pediatric intensive care settings.