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Communication and decision-making regarding children with critical cardiac disease: a systematic review of family preferences

Published online by Cambridge University Press:  31 July 2018

Kathryn Neubauer ,
Erin P. Williams ,
Pamela K. Donohue  and
Renee D. Boss
Kathryn Neubauer*
Affiliation:
Department of Pediatric Cardiology, The Johns Hopkins Children’s Center, Baltimore, MD, USA
Erin P. Williams
Affiliation:
The Berman Institute of Bioethics, Baltimore, MD, USA
Pamela K. Donohue
Affiliation:
Department of Pediatrics, The Johns Hopkins Children’s Center, Baltimore, MD, USA
Renee D. Boss
Affiliation:
Department of Pediatrics, The Johns Hopkins Children’s Center, The Berman Institute of Bioethics, Baltimore, MD, USA
*
Author for correspondence: K. Neubauer, MD, Department of Cardiology, Johns Hopkins Children’s Center, 1800 Orleans St, Baltimore, MD 21287, USA. Tel: 410 502 1943; Fax: 410 614 5360; E-mail: [email protected]
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Abstract

Critical heart disease in the pediatric population is associated with high morbidity and mortality. Research around the most effective communication and decision-making strategies is lacking. This systematic review aims to summarise what is known about parent preference for communication and decision-making in children with critical heart disease. Database searches included key words such as family, pediatric heart disease, communication, and decision-making. A total of 10 studies fit our inclusion criteria: nine were qualitative studies with parent interviews and one study was quantitative with a parent survey. We found three main themes regarding physician–parent communication and decision-making in the context of paediatric heart disease: (1) amount, timing, and content of information provided to parents; (2) helpful physician characteristics and communication styles; and (3) reinforcing the support circle for families.

Keywords

Familychildrenheart diseasecommunicationdecision-making
Type
Review Article
Information
Cardiology in the Young , Volume 28 , Issue 10 , October 2018 , pp. 1088 - 1092
Copyright
© Cambridge University Press 2018 

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