Charge Nurse/Team Lead St. Louis Children's Hospital Saint Louis, Missouri, United States
Title: Warrior Wall: Honoring the Strength of Our Sickle Cell Warriors and Their Ongoing Journey.
Abstract : Young adults with sickle cell disease may experience considerable anxiety when transitioning from pediatric to adult care around 19-20 years of age. The loss of familiar providers and healthcare spaces can lead to significant fear. During this transition process, patients need additional support and emotional reassurance.
The purpose of this project is to provide a supportive and celebratory experience to honor patients and lessen emotional distress as they transition from pediatric to adult care.
To determine the best ways to support patients with SCD through their care transition, surveys were administered to those 15-19 years of age. Respondents feared being forgotten and desired to make care transition less daunting, shifting the focus to a happier experience. With the support of internal and external funding, the Sickle Cell committee developed a transition celebration for young adults. This event occurs at the last outpatient clinic appointment prior to transition of care and includes a symbolic gong sounding, confetti, care package, and gift card. Inpatient and clinic staff, as well as the care team, join the patient and their family for the celebration. The Sickle Cell Committee also created a large art piece prominently displayed in the hematology/oncology unit, where patients transitioning care can add their handprint, name, and/or a few words to drop in the plexiglass boxes to ensure they are not forgotten.
Patients were surveyed after their celebrations to assess satisfaction and perceived support. Results indicated that 80% of patients found the events positive and met their desire to leave a legacy. Currently, 10-15 young adult patients transition care each year. While this is a small sample size, we continue to evaluate the effectiveness of this new program and make changes as necessary.
