The purpose of this study is to determine the antecedents and outcomes of self-care in adults living with congenital heart disease (ACHD). Fifty years ago only one third of children born with congenital heart disease survived to 10 years of age, but today 90% of children survive to adulthood. Though the majority had surgical repair in childhood, they are not cured. Surgical sequelae and residual defects cause many complications in adulthood such as arrhythmia, heart failure, and the development of renal, pulmonary, and hepatic comorbidities. These complications cause significant morbidity and require lifelong surveillance and disease management. Though not all late complications can be prevented, there is evidence that a lack of adequate self-care is associated with an increase in ACHD morbidity. Adults who have lapses in routine care, for instance, are more than three times likely to require emergent interventions, receive additional diagnoses, and experience symptoms;further, those who are less physically active have greater reductions in functional capacity. Thus improving self-care may be an effective means of reducing ACHD morbidity, but limited evidence exists regarding the antecedents and outcomes of self-care in ACHD and no study has examined self-care in an exclusively adult cohort.
The specific aims of this proposal are to 1) determine the individual (age, race, gender, education level, insurance status, marital status), clinical (ACHD severity, NYHA classification, number and severity of comorbidities), ACHD knowledge, and behavioral (fear of complications, depression, self-care confidence) antecedents of self-care in ACHD;and 2) determine the relationship between self-care and health outcomes (functional capacity, symptom burden, and health resource utilization). A secondary aim is to explore the moderating effect of parental overprotection in childhood on level of self-care. Descriptive, correlation, and regression analysis will be used to statistically evaluate specific aims. The results of this study will fill a significant gap in identifying both modifiable and nonmodifiable factors related to self-care in ACHD and specific health outcomes that may be affected by self-care behaviors. From this formative work, long-term objectives include the development and testing of interventions to improve self-care and health outcomes in ACHD. With the ACHD population exceeding one million and growing by 5% each year, a critical need exists to understand effective means of reducing morbidity through the support of self-care. The proposed study falls directly within the goals of the National Institute of Nursing Research to enhance health promotion through self-management of chronic illness to reduce the burden of symptoms and disability due to ACHD.

Public Health Relevance

Over a million adults born with a heart defect are alive, but face poor health outcomes because of past surgeries or continued heart problems. Poor health outcomes have been associated with poor self-care behaviors. The purpose of this study is to determine the reasons adults with heart defects do or do not perform self-care in order to develop ways to improve self-care and health outcomes.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Predoctoral Individual National Research Service Award (F31)
Project #
Application #
Study Section
National Institute of Nursing Research Initial Review Group (NRRC)
Program Officer
Banks, David
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
Emory University
Schools of Nursing
United States
Zip Code
McCabe, Nancy; Dunbar, Sandra B; Butler, Javed et al. (2015) Antecedents of self-care in adults with congenital heart defects. Int J Cardiol 201:610-5