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Interpersonal relationships after prenatal diagnosis of congenital heart disease: Social stressors and supports

Journal of Perinatology volume 45, pages 907–913 (2025)Cite this article

Subjects

Abstract

Objective

To identify social stressors and supports for expectant parents after prenatal diagnosis of congenital heart disease (CHD) and inform interventions to reduce distress.

Method

Parents of children diagnosed prenatally with CHD (N = 37) were purposively sampled across eight health systems. Qualitative data were collected using crowdsourcing methods and coded/analyzed using thematic analysis.

Results

Social stressors increasing distress after prenatal diagnosis were widely endorsed: (1) feelings of loneliness (most common: 68%), (2) well-meaning yet unhelpful comments, (3) loss of celebration of pregnancy, (4) information overload, and (5) untimely/insensitive discussions surrounding pregnancy termination. Social supports included: (1) emotional support and small acts of kindness, (2) hope/connection through the experiences of others, (3) informational support, (4) nurturing normalcy and the joy of pregnancy, and (5) connection through religion/spirituality.

Conclusion

Interpersonal relationships are vital for coping with prenatal diagnosis. Interventions to reduce distress after prenatal diagnosis should attend to common social stressors.

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Data availability

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

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Acknowledgements

The authors would like to thank the parent participants and parent research partners for their contributions to this study. The senior author would also like to thank the faculty of the PEDSnet Scholars Training Program.

Funding

This work was supported by the AHRQ-PCORI funded PEDSnet Scholars Training Program (5K12HS026393 [to ES]).

Author information

Author notes

  1. Lindsay A. Edwards

    Present address: Duke University Medical Center, Durham, NC, USA

Authors and Affiliations

  1. Nemours Cardiac Center, Nemours Children’s Hospital Delaware, Wilmington, DE, USA

    Emily Marshall, Colette Gramszlo & Erica Sood

  2. Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, PA, USA

    Emily Marshall, Anne E. Kazak & Erica Sood

  3. Nemours Center for Healthcare Delivery Science, Nemours Children’s Hospital Delaware, Wilmington, DE, USA

    Alejandra Perez Ramirez, Anne E. Kazak & Erica Sood

  4. Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    Amanda J. Shillingford

  5. Department of Pediatrics, Washington University in St. Louis, St. Louis, MO, USA

    Cynthia M. Ortinau

  6. Departments of Pediatrics and Psychiatry, University of Colorado School of Medicine, Aurora, CO, USA

    Sarah L. Kelly

  7. Heart and Mind Wellbeing Center, Heart Institute and Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Nadine Kasparian

  8. Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA

    Nadine Kasparian & Allison A. Divanovic

  9. Seattle Children’s Hospital, Seattle, WA, USA

    Lindsay A. Edwards

  10. Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Allison A. Divanovic

  11. Department of Pediatrics, Nationwide Children’s Hospital, Columbus, OH, USA

    Jo Ann Davis

  12. Department of Psychiatry and Behavioral Sciences, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA

    Samantha C. Butler

  13. Nemours Cardiac Center, Nemours Children’s Hospital Florida, Orlando, FL, USA

    Katherine Braley

  14. Parent Research Partner, Wilmington, DE, USA

    Erin Riegel

Authors
  1. Emily Marshall
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  2. Colette Gramszlo
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  4. Anne E. Kazak
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  6. Cynthia M. Ortinau
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  7. Sarah L. Kelly
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  8. Nadine Kasparian
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  9. Lindsay A. Edwards
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  10. Allison A. Divanovic
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  15. Erica Sood
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Contributions

This manuscript has been read and approved by all of the authors, the requirements for authorship have been met and nobody who qualifies for authorship has been excluded. All authors have made a substantial contribution to the concept or design of the article; or the acquisition, analysis, or interpretation of data for the article, as listed below: Emily Marshall: Data analysis and interpretation; Colette Gramszlo: Data acquisition, analysis, and interpretation; Alejandra Perez Ramirez: Data acquisition and analysis; Anne Kazak: Concept and design of study and data interpretation; Amanda Shillingford: Design of study and data interpretation; Cynthia Ortinau: Design of study and data interpretation; Sarah Kelly: Design of study and data interpretation; Nadine Kasparian: Design of study and data interpretation; Lindsay Edwards: Design of study and data interpretation; Allison Divanovic: Design of study and data interpretation; Jo Ann Davis: Design of study and data interpretation; Samantha Butler: Design of study and data interpretation; Katherine Braley: Design of study and data interpretation; Erin Riegel: Design of study and data interpretation; Erica Sood: Concept and design of study and data acquisition, analysis, and interpretation.

Corresponding author

Correspondence to Erica Sood.

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Competing interests

The authors declare no competing interests.

Ethical approval

This study received approval from the Nemours Children’s Health Institutional Board (#1395313) and was performed in accordance with the Declaration of Helsinki.

Informed consent

Informed consent was obtained from all participants prior to study procedures. All participants were adults and therefore parental permission does not apply.

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Marshall, E., Gramszlo, C., Perez Ramirez, A. et al. Interpersonal relationships after prenatal diagnosis of congenital heart disease: Social stressors and supports. J Perinatol 45, 907–913 (2025). https://doi.org/10.1038/s41372-025-02250-z

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