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Provider insights on shared decision-making with families affected by CHD

Published online by Cambridge University Press:  03 November 2021

Nelangi M. Pinto Open the ORCID record for Nelangi M. Pinto [Opens in a new window] ,
Angira Patel ,
Rebecca K. Delaney Open the ORCID record for Rebecca K. Delaney [Opens in a new window] ,
Mary T. Donofrio ,
Bradley S. Marino ,
Stephen Miller ,
Elissa M. Ozanne ,
Susan L. Zickmund ,
Michelle H. Karasawa  and
Mandy L. Pershing
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Nelangi M. Pinto*
Affiliation:
Division of Cardiology, Department of Pediatrics, University of Utah, Salt Lake City, UT, USA
Angira Patel
Affiliation:
Divisions of Cardiology, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
Rebecca K. Delaney
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Mary T. Donofrio
Affiliation:
Division of Pediatric Cardiology, Children’s National Hospital, George Washington University School of Medicine, Washington, DC, USA
Bradley S. Marino
Affiliation:
Divisions of Cardiology, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA Division of Critical Care Medicine, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
Stephen Miller
Affiliation:
Division of Pediatric Cardiology, Duke University Medical Center, Durham, NC, USA
Elissa M. Ozanne
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Susan L. Zickmund
Affiliation:
Division of Epidemiology, Department of Internal Medicine, University of Utah, Salt Lake City, UT, USA Salt Lake City VA Informatics Decision-Enhancement and Analytic Sciences (IDEAS) Center for Innovation, Salt Lake City, UT, USA
Michelle H. Karasawa
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Mandy L. Pershing
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Angela Fagerlin
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA Salt Lake City VA Informatics Decision-Enhancement and Analytic Sciences (IDEAS) Center for Innovation, Salt Lake City, UT, USA
*
Author for correspondence: N. Pinto, MD, MS, Department of Pediatric Cardiology, University of Utah, Primary Children’s Outpatient Services Building, 81 Mario Capecchi Drive, Salt Lake City, UT 84113, USA. Tel: 801-213-7610; Fax: 801-213-7778. E-mail: [email protected]
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Abstract

Background and Objectives:

Little data exist on provider perspectives about counselling and shared decision-making for complex CHD, ways to support and improve the process, and barriers to effective communication. The goal of this qualitative study was to determine providers’ perspectives regarding factors that are integral to shared decision-making with parents faced with complex CHD in their fetus or newborn; and barriers and facilitators to engaging in effective shared decision-making.

Methods:

We conducted semi-structured interviews with providers from different areas of practice who care for fetuses and/or children with CHD. Providers were recruited from four geographically diverse centres. Interviews were recorded, transcribed, and analysed for key themes using an open coding process with a grounded theory approach.

Results:

Interviews were conducted with 31 providers; paediatric cardiologists (n = 7) were the largest group represented, followed by nurses (n = 6) and palliative care providers (n = 5). Key barriers to communication with parents that providers identified included variability among providers themselves, factors that influenced parental comprehension or understanding, discrepant expectations, circumstantial barriers, and trust/relationship with providers. When discussing informational needs of parents, providers focused on comprehensive short- and long-term outcomes, quality of life, and breadth and depth that aligned with parental goals and needs. In discussing resources to support shared decision-making, providers emphasised the need for comprehensive, up-to-date information that was accessible to parents of varying situations and backgrounds.

Conclusions:

Provider perspectives on decision-making with families with CHD highlighted key communication issues, informational priorities, and components of decision support that can enhance shared decision-making.

Keywords

CHDshared decision-makinginterviews
Type
Original Article
Information
Cardiology in the Young , Volume 32 , Issue 9 , September 2022 , pp. 1475 - 1482
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Copyright
© The Author(s), 2021. Published by Cambridge University Press

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