Abstract
Background: Due to medical advances, women with congenital heart disease (CHD) are living longer, healthier lives and many are considering pregnancy. The hemodynamic changes of pregnancy can present high risks of morbidity and mortality for many women with CHD. As little is known about these women’s reproductive health experiences, this study examines their perceptions of pregnancy and family planning care as related to CHD. Methods: Women ages 18-45 years with a diagnosis of CHD associated with a WHO classification II-IV for pregnancy morbidity and mortality participated in individual, semi-structured interviews exploring their experiences and attitudes toward parenthood, pregnancy, contraception and family planning care provision. Interviews were audio-recorded, transcribed verbatim, and analysis was performed by two independent coders using an inductive coding approach. Results: Twenty women with CHD participated in interviews (average age 30.1 years, SD 5.85). Nine women had ever been pregnant and 14 considered becoming a parent in the future. We identified 5 key interview themes: (1) Women saw CHD as impacting their reproductive health goals and decisions; (2) Women with CHD desired tailored, disease-specific family planning information; (3) Women with CHD viewed their cardiologist as the primary source for family planning information and prefer provider-initiated reproductive health discussions starting in adolescence; (4) Women with CHD desire coordinated preconception and intrapartum care between their cardiologists and women’s health providers; and (5) Women with CHD perceived a lack of safe contraceptive methods for their condition. Conclusions: Women with CHD face a variety of disease-specific family planning concerns and desire coordinated reproductive healthcare from their cardiologists and women’s health providers. As more women with CHD reach childbearing age, these unique needs must be addressed to empower women to make informed family planning decisions. These results provide a foundation for interventions to improve patient-centered interdisciplinary reproductive healthcare for this population.
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