Unique Lived Experiences of Partners of Individuals Living with Single Ventricle Congenital Heart Disease -A Pilot Investigation

Introduction: With advances in care, an increasing number of individuals with single-ventricle congenital heart disease (SVCHD) are surviving into adulthood. Partners of individuals with chronic illness have unique experiences and challenges. This pilot qualitative research study explores the lived experiences of partners of individuals with SVCHD. Methods: Partners of SVCHD patients ≥18 years were recruited and participated in Experience Group (EG) sessions and 1:1 interviews. EG sessions are lightly moderated groups that bring together individuals with similar experiences and place them as the experts to discuss lived experiences. Formal qualitative coding was performed to identify salient themes. Results: A total of 6 partners, 4 male, 4 married and all partners of someone of the opposite sex, participated. Themes identified included uncertainty of their partners future health and mortality, becoming a lay SVCHD specialist, balancing multiple roles, and providing positivity and optimism.(Table) Participants expressed a steep learning curve initially, which transforms into a strong understanding of the condition. Over time they took on the advocacy role as a repository of medical history and navigating the health system, which is often a role of parents of younger SVCHD patients. They struggled with taking on the role of primary medical caregiver of their partner while managing greater responsibility at home, and changes to their role as a spouse and a parent. Despite the uncertainties, participants described many facets of championing positivity and optimism for the future for their partner. Conclusions: In this first of its kind pilot study, partners of individuals with SVCHD expressed unique challenges and experiences in their lives. There is a tacit need to design strategies to help partners of SVCHD patients cope with those challenges. Further larger-scale research is required to better understand the experiences of this unique population.