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CC BY-NC-ND 4.0 · AJP Rep 2025; 15(01): e6-e17
DOI: 10.1055/a-2504-1813
Original Article

“Trying to Grab Pieces of Hope”: Exploring the Experiences of Black and Hispanic Parents following a Congenital Heart Disease Diagnosis

Sharla Rent 
1   Department of Pediatrics, Duke University School of Medicine, Duke Global Health Institute, Durham, North Carolina
,
Kwai Tei Candy Chan Poon
2   Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina
,
Meredith Sooy-Mossey
2   Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina
,
Mary Frances Weeks
2   Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina
,
James C. Roberts
2   Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina
,
Dakota Douglas
3   Duke Initiative for Science and Society, Duke Graduate School, Durham, North Carolina
,
Sarah Ellestad
4   Department of Obstetrics and Gynecology, Duke University School of Medicine, Durham, North Carolina
,
Monica E. Lemmon
5   Department of Pediatrics and Population Health Sciences, Duke University School of Medicine, Durham, North Carolina
,
Kevin Hill
2   Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina
,
McAllister Windom
2   Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina
› Author Affiliations Funding This study was supported by the Translating Duke Health Children's Health and Discovery Initiative.
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Abstract

Objective Congenital heart disease (CHD) is an important contributor to pediatric morbidity and mortality. Unfortunately, disparities in the diagnosis and treatment of CHD exist across racial and ethnic groups. The objective of this study was to share the experiences of Hispanic and Black families with CHD to better understand their needs.

Study Design This was a descriptive qualitative study involving two 2-part focus groups, one conducted in English and one in Spanish, consisting of parents of infants with CHD. Focus groups were audio recorded, transcribed, and analyzed via a conventional content analysis approach.

Results Six family members participated, representing a range of cardiac diagnoses. Two participants cited their identity as non-Hispanic Black and four as Hispanic. Three organizing themes emerged related to (1) communication, (2) psychosocial needs and processing, and (3) practical challenges associated with having a child with CHD. Together, these organizing themes supported a singular global theme: structural and socioemotional gaps in care exist for families of infants with CHD that need to be met in order to optimize care for patients and families.

Conclusion Societal and systems-level factors, including structural inequities, contribute to the care gaps experienced by racial and ethnic minority families of children with CHD.

Key Points

  • Poor communication around CHD diagnosis impairs provider–patient trust.

  • Language barriers hinder accurate communication about CHD diagnosis and treatment.

  • Parents of children with CHD have unmet mental health needs.

  • Perinatal providers should champion health equity for CHD patients and their families.

Keywords

congenital heart disease - complex congenital heart disease - neonatal intensive care - parental mental health - communication - health disparities - health equity


Publication History

Received: 13 July 2024

Accepted: 30 October 2024

Article published online:
07 January 2025

© 2025. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)

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