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Am J Perinatol 2024; 41(S 01): e446-e455
DOI: 10.1055/a-1906-8786
Original Article

Meeting Parents' Needs for Education and Preparation following Congenital Heart Disease Diagnosis: Recommendations from a Crowdsourced Study

Colette Gramszlo 
1   Nemours Cardiac Center, Nemours Children's Hospital, Delaware, Wilmington, Delaware
,
Allison Karpyn
2   Department of Human Development and Family Sciences, Center for Research in Education and Social Policy, University of Delaware, Newark, Delaware
,
Jennifer Christofferson
3   Center for Healthcare Delivery Science, Nemours Children's Health System, Wilmington, Delaware
,
Linda G. McWhorter
4   Division of Behavioral Health, Nemours Children's Hospital, Delaware, Wilmington, Delaware
,
Abigail C. Demianczyk
5   Department of Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
,
Trent Neely
6   Brothers by Heart/Sisters by Heart, El Segundo, California
,
Sinai Zyblewski
7   Department of Pediatrics, Medical University of South Carolina, Charleston, South Carolina
,
Amanda Shillingford
5   Department of Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
,
Anne E. Kazak
3   Center for Healthcare Delivery Science, Nemours Children's Health System, Wilmington, Delaware
8   Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania
,
Erica Sood
1   Nemours Cardiac Center, Nemours Children's Hospital, Delaware, Wilmington, Delaware
3   Center for Healthcare Delivery Science, Nemours Children's Health System, Wilmington, Delaware
4   Division of Behavioral Health, Nemours Children's Hospital, Delaware, Wilmington, Delaware
8   Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania
› Author Affiliations Funding This project was supported by an Institutional Development Award from the National Institute of General Medical Sciences of the National Institutes of Health under grant number U54-GM104941 (PI: Binder-Macleod).
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Abstract

Objective This article characterizes the educational needs of parents following fetal or neonatal congenital heart disease (CHD) diagnosis and generates recommendations for meeting these needs.

Study Design Online crowdsourcing methods were used to collect qualitative data from 95 parents of children with CHD regarding their needs for education and preparation following fetal or neonatal diagnosis. Data were analyzed using qualitative methods and themes were organized around the substructure of met and unmet needs.

Results Two themes represented consistently met needs, whereas 10 themes represented needs that were either inconsistently met or consistently unmet. Parents reported needing more information about social, emotional, and financial supports, preparation for long-term care, and guidance toward reputable online resources. Parents also provided recommendations for meeting these needs.

Conclusion Parents' needs for education and preparation following CHD diagnosis are much broader in scope than what they currently receive. Addressing these may support parental coping and active participation in medical decision-making.

Key Points

  • CHD counseling after diagnosis may provide opportunities to promote parents' mental health.

  • Guidelines recommend that this counseling should include emotional and decision-making support, however, it is unclear what parents actually receive.

  • This study found that parents' needs for education and preparation following CHD diagnosis are much broader in scope than what they currently receive.

Keywords

congenital heart disease - perinatal counseling - psychosocial - parent education - qualitative

Note

The study sponsor was not involved in the study design, the collection, analysis, and interpretation of data, the writing of the report, or the decision to submit the paper for publication.




Publication History

Received: 30 November 2021

Accepted: 12 July 2022

Accepted Manuscript online:
21 July 2022

Article published online:
12 September 2022

© 2022. Thieme. All rights reserved.

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333 Seventh Avenue, 18th Floor, New York, NY 10001, USA

 

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