A Novel Approach Using Human-centered Design to Improve Discharge Planning for Patients with Single-ventricle Congenital Heart Disease During the Interstage Period

Purpose/Objectives: Successful and safe discharge planning of patients with single-ventricle congenital heart disease (SV CHD) during the interstage period requires clear communication between patient caregivers and the medical team. The goal of this project was to improve the SV CHD discharge planning process using human-centered design and principles of patient-centered care.

Design/Methods: The project was conducted by medical and graduate students as part of a Master of Design focused on Design in Health graduate degree, advised by clinical members of the Heart Center. Direct observations were performed in both the cardiac ICU and outpatient interstage clinic to gain a deep understanding of the discharge process. In addition, contextual interviews were performed with both caregivers of patients with SV CHD and medical team members, focusing on details of the interstage discharge process. Interviews and observations were synthesized using human-centered design methods, including affinity diagramming, journey mapping, and artifact analysis. This process led to key insights followed by identification of gaps and opportunities. Several cycles of ideation, prototyping, and testing were performed to design a primary intervention to improve the discharge planning process.

Results: 25 stakeholder interviews were completed, including 5 patient caregivers and 20 multidisciplinary care team members. In addition, 15 hours of direct observation and contextual inquiry of the stakeholders were conducted. Figure 1 demonstrates key insights and design cycles. It was clear that the process of preparing for discharge involved communication throughout the entire stay, not only at the end of the hospital course. Five initial concepts were designed and prototyped. After feedback from caregivers and providers, a bilingual workbook for caregivers and the care team to use during the entire admission was selected as the primary intervention. A 25-page workbook was designed and iterated based on additional feedback from all stakeholders. The workbook included maps of the hospital journey, general information for caregivers, annotatable pathways and sections, red flags, education passports, and an emotion tracker throughout admission. Figure 2 shows an example of a page from the workbook involving the Feeding Pathway component of a patient’s hospital stay and transition home.

Conclusion/Discussion: Novel human-centered design methodology can improve the hospital experience and discharge process in patients with SV CHD and could be used to address gaps in other types of CHD or complex pediatric care settings. Successful discharge planning involves intensive engagement and communication between caregivers and providers throughout hospitalization. Further testing of the discharge workbook will determine its direct impact in the discharge process and caregiver experience of patients with SV CHD.