Examining the Real‐Life Journey of Individuals and Families Affected by Single‐Ventricle Congenital Heart Disease

BACKGROUND: The lifetime journey of patients with single‐ventricle congenital heart disease is characterized by long‐term challenges that are incompletely understood and still unfolding. Health care redesign requires a thorough understanding of this journey to create and implement solutions that improve outcomes. This study maps the lifetime journey of individuals with single‐ventricle congenital heart disease and their families, identifies the most meaningful outcomes to them, and defines significant challenges in the journey. METHODS AND RESULTS: This qualitative research study involved experience group sessions and 1:1 interviews of patients, parents, siblings, partners, and stakeholders. Journey maps were created. The most meaningful outcomes to patients and parents and significant gaps in care were identified across the life journey. A total of 142 participants from 79 families and 28 stakeholders were included. Lifelong and life‐stage specific journey maps were created. The most meaningful outcomes to patients and parents were identified and categorized using a “capability (doing the things in life you want to), comfort (experience of physical/emotional pain/distress), and calm (experiencing health care with the least impact on daily life)” framework. Gaps in care were identified and classified into areas of ineffective communication, lack of seamless transitions, lack of comprehensive support, structural deficiencies, and insufficient education. CONCLUSIONS: There are significant gaps in care during the lifelong journey of individuals with single‐ventricle congenital heart disease and their families. A thorough understanding of this journey is a critical first step in developing initiatives to redesign care around their needs and priorities. This approach can be used for people with other forms of congenital heart disease and other chronic conditions. REGISTRATION: URL: https://www.clinicaltrials.gov; Unique identifier: NCT04613934.