Title

Parents' decision-making for their foetus or neonate with a severe congenital heart defect

Authors

Rebecca K. Delaney, Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA.
Nelangi M. Pinto, Division of Pediatric Cardiology, Department of Pediatrics, University of Utah, Salt Lake City, UT, USA.
Elissa M. Ozanne, Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA.
Heather Brown, Center for Clinical and Translational Science, University of Utah, Salt Lake City, UT, USA.
Louisa A. Stark, Center for Clinical and Translational Science, University of Utah, Salt Lake City, UT, USA.
Melissa H. Watt, Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA.
Michelle Karasawa, Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA.
Angira Patel, Division of Cardiology, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Mary T. Donofrio, Division of Cardiology, George Washington University, Children's National Hospital, Washington, DC, USA.
Michelle M. Steltzer, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
Stephen G. Miller, Department of Pediatrics, Division of Pediatric Cardiology, Duke University Medical Center, Durham, NC, USA.
Susan L. Zickmund, VA HSR&D Informatics, Decision-Enhancement and Analytic Sciences Center, VA Salt Lake City Health Care System, Salt Lake City, UT, USA.
Angela Fagerlin, Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA.

Document Type

Journal Article

Publication Date

6-1-2022

Journal

Cardiology in the young

Volume

32

Issue

6

DOI

10.1017/S1047951121003218

Keywords

Congenital heart disease; counselling; decision support; decision-making; parent; qualitative research

Abstract

BACKGROUND: Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is critical for developing interventions to improve counselling for these families. METHODS: We conducted focus groups in four academic medical centres across the United States of America with a purposive sample of parents who chose termination, palliative care, or surgery for their foetus or neonate diagnosed with severe CHD. RESULTS: Ten focus groups were conducted with 56 parents ( = 34 years; 80% female; 89% White). Results were constructed around three domains: decision-making approaches; values and beliefs; and decision-making challenges. Parents discussed varying approaches to making the decision, ranging from relying on their "gut feeling" to desiring statistics and probabilities. Religious and spiritual beliefs often guided the decision to not terminate the pregnancy. Quality of life was an important consideration, including how each option would impact the child (e.g., pain or discomfort, cognitive and physical abilities) and their family (e.g., care for other children, marriage, and career). Parents reported inconsistent communication of options by clinicians and challenges related to time constraints for making a decision and difficulty in processing information when distressed. CONCLUSION: This study offers important insights that can be used to design interventions to improve decision support and family-centred care in clinical practice.

Department

Pediatrics

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