| Purpose: The purpose of this study was to qualitatively explore how individuals with chronic complex congenital heart disease (CHD) make sense of developmentally anticipated life tasks during Emerging Adulthood (EA). Background: The life expectancy for complex CHD has improved. However, CHD survivors face multiple adverse outcomes as they age. It is not well understood how adults with CHD make sense of their life beyond existing QOL and PRO measures, and how they do at a time when transition to independent living sets the foundation for the rest of their life. Methods:13 young adults (age 22-25) with complex CHD were recruited from a cardiac clinic in Washington State to participate in a semi-structured interview. Data were analyzed using Interpretative Phenomenological Analysis (IPA). Results: Findings reveal five experiential themes, and corresponding subthemes within the five (5) EA developmental dimensions: (a) ‘Disease is part of self,’ (b) ‘Unknown directives because of CHD’, (c) ‘Can do, but within limits,’ (d) ‘Internalize the transition,’ and (e)‘There is hope, but it provisional.’ Conclusion: The personal experiences of young adults elucidate the unique; yet converging nature of their chronic pediatric heart disease, as adults. The findings can be used to inform patient-centered, age-appropriate care throughout the lifespan. Future research from other CHD centers is needed to add to the existing literature. |