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

  • Pinto, Nelangi M1
  • Patel, Angira2
  • Delaney, Rebecca K3
  • Donofrio, Mary T4
  • Marino, Bradley S2, 5
  • Miller, Stephen6
  • Ozanne, Elissa M3
  • Zickmund, Susan L7, 8
  • Karasawa, Michelle H3
  • Pershing, Mandy L3
  • Fagerlin, Angela3, 8
  • 1 Division of Cardiology, Department of Pediatrics, University of Utah, Salt Lake City, UT, USA.
  • 2 Divisions of Cardiology, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
  • 3 Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA.
  • 4 Division of Pediatric Cardiology, Children's National Hospital, George Washington University School of Medicine, Washington, DC, USA.
  • 5 Division of Critical Care Medicine, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
  • 6 Division of Pediatric Cardiology, Duke University Medical Center, Durham, NC, USA.
  • 7 Division of Epidemiology, Department of Internal Medicine, University of Utah, Salt Lake City, UT, USA.
  • 8 Salt Lake City VA Informatics Decision-Enhancement and Analytic Sciences (IDEAS) Center for Innovation, Salt Lake City, UT, USA.
Published Article
Cardiology in the Young
Cambridge University Press
Publication Date
Nov 03, 2021
DOI: 10.1017/S1047951121004406
PMID: 34728001


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. 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. 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. 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.

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