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

ABSTRACT: 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

SUBMITTER: Mery CM 

PROVIDER: S-EPMC10111463 | biostudies-literature | 2023 Mar

REPOSITORIES: biostudies-literature