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Sexual and Reproductive Health Care Experiences and Perceptions of Women with Congenital Heart Disease

Abstract

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 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 explores their perceptions of pregnancy and family planning care as related to CHD. Women ages 18-45 years with a diagnosis of CHD associated with a World Health Organization (WHO) classification II–IV for pregnancy morbidity and mortality participated in individual, semi-structured interviews exploring their experiences, attitudes, and preferences toward parenthood, pregnancy, contraception and family planning care provision. Interviews were audio-recorded, transcribed verbatim. Two independent coders performed analysis using deductive and inductive coding approaches. Twenty women with CHD participated in interviews (average age 30.1 years, SD 5.85). Nine women had a prior pregnancy and 14 considered becoming a parent in the future. We identified 5 key themes among the women: (1) CHD impacted their reproductive health goals and decisions; (2) Women with CHD perceived a lack of safe contraceptive methods for their condition; (3) Women desired tailored, disease-specific sexual and reproductive health (SRH) information; (4) Women viewed their cardiologist as the primary source for SRH information and prefer provider-initiated discussions starting in adolescence; and (5) Women desire coordinated pre-pregnancy and intrapartum care between their cardiologists and women’s health providers. These results provide a foundation for interventions to improve patient-centered interdisciplinary reproductive healthcare for this population.

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Data Availability

Interview transcripts are unavailable for release unless a resource sharing plan is enacted between the authors and receiving institution. No publicly available data was used in this project.

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Acknowledgements

None.

Funding

Private donation through Children’s Hospital Foundation.

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Authors and Affiliations

Authors

Contributions

TK, OS and MBT: Conceptualized the study. TK and OS: Developed study tools and design. AK and SW: Reviewed and edited study tools and design for specific application to patient population. OS: Coordinated patient recruitment and performed patient interviews. OS, NS and TK: Performed data analysis and interpretation. NS: Wrote the main manuscript text and prepared tables. All authors reviewed and edited the manuscript.

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Correspondence to Natalie Stokes.

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Stokes, N., Stransky, O.M., West, S.C. et al. Sexual and Reproductive Health Care Experiences and Perceptions of Women with Congenital Heart Disease. Pediatr Cardiol (2022). https://doi.org/10.1007/s00246-022-02951-8

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  • DOI: https://doi.org/10.1007/s00246-022-02951-8

Keywords

  • Sexual and reproductive health
  • Congenital heart disease
  • Family planning
  • Pregnancy