A Multimethod Approach to Understanding Emerging Adult and Parent Management of Congenital Heart Disease

Abstract

Background: Congenital heart disease (CHD) is the most prevalent birth defect in the United States. Advances in treatment have changed CHD from what once was almost always a life-threatening condition to what is commonly a lifelong chronic condition. Up to 60% of adults with CHD experience large gaps in cardiology care during the transition from pediatric to adult specialty care. Effective CHD management in emerging adulthood maximizes lifelong potential, functioning and quality of life. Past research has failed to consider how emerging adults and their parents work together to manage CHD together as an interdependent team. Thus, there remains a dearth of information on how best to support emerging adults and their parents. Since CHD is a life-long diagnosis there is a critical need to understand the ways in which emerging adults and their parents as primary care partners engage in behavior to manage CHD together. This manuscript dissertation had an overarching goal to develop a deeper understanding of emerging adult and parent contributions to the management of CHD. Methods: First, an integrative review summarized and evaluated the evidence of published and peer-reviewed literature regarding parental perspective of the emerging adult with CHD. Next, a cross-sectional quantitative hypothesis-generating pilot study investigating emerging adult and parent contributions to management of CHD was conducted. And finally, an exploratory qualitative study was completed to describe health care team provider perspectives on the experience of emerging adults and their parents in managing CHD. Results: These three manuscripts have the key following results: 1) parents have concerns about their emerging adult children with CHD related to their future, independence in self-care of CHD, including health care system navigation, 2) there was a positive correlation between emerging adult and parent contributions to self-care (management, monitoring and maintenance) of CHD, and in the domain of navigating the health care system, there was a weak and negative correlation (the more an emerging adult does, the less the parent contributes), and 3) providers in health care teams report differences in both emerging adult and parent factors that impact management, and that self-care in emerging adults with CHD is critical with known health care system barriers that need assessment and improvement to support this population. Conclusion: The constellation of these findings from the dissertation and past work help fill critical knowledge and research gaps in emerging adult and parent/care partner contributions to management of CHD. These findings support the much-needed future work to inform clinical care, research, and policy for emerging adults with CHD and parents to further improve health and quality of life for this population.