TY - JOUR
T1 - Provider insights on shared decision-making with families affected by CHD
AU - Pinto, Nelangi M.
AU - Patel, Angira
AU - Delaney, Rebecca K.
AU - Donofrio, Mary T.
AU - Marino, Bradley S.
AU - Miller, Stephen
AU - Ozanne, Elissa M.
AU - Zickmund, Susan L.
AU - Karasawa, Michelle H.
AU - Pershing, Mandy L.
AU - Fagerlin, Angela
N1 - Funding Information:
This work was supported by the American Heart Association’s Strategically Focused Research Network – Children’s grant (17SFRN33660465). The funder did not participate in the work.
Publisher Copyright:
© The Author(s), 2021. Published by Cambridge University Press.
PY - 2022/9/3
Y1 - 2022/9/3
N2 - 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.
AB - 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.
KW - CHD
KW - interviews
KW - shared decision-making
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U2 - 10.1017/S1047951121004406
DO - 10.1017/S1047951121004406
M3 - Article
C2 - 34728001
AN - SCOPUS:85119108759
SN - 1047-9511
VL - 32
SP - 1475
EP - 1482
JO - Cardiology in the young
JF - Cardiology in the young
IS - 9
ER -