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Diagnosis to death: family experiences of paediatric heart disease

Published online by Cambridge University Press:  24 August 2020

Kathryn Neubauer Open the ORCID record for Kathryn Neubauer [Opens in a new window] ,
Erin P. Williams ,
Pamela K. Donohue ,
Elliott M. Weiss ,
Mithya Lewis-Newby  and
Renee D. Boss
Kathryn Neubauer*
Affiliation:
Department of Pediatric Palliative Medicine, The Johns Hopkins Children’s Center, Baltimore, USA
Erin P. Williams
Affiliation:
Columbia University Irving Medical Center, Vagelos College of Physicians and Surgeons, New York, NY, USA The Berman Institute of Bioethics, Baltimore, MD, USA
Pamela K. Donohue
Affiliation:
Department of Pediatrics, The Johns Hopkins Children’s Center, Baltimore, MD, USA
Elliott M. Weiss
Affiliation:
Department of Pediatrics, Division of Neonatology, University of Washington School of Medicine, Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute, Seattle, WA, USA
Mithya Lewis-Newby
Affiliation:
Divisions of Pediatric Cardiac Critical Care Medicine, University of Washington School of Medicine, Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute, Seattle, WA, USA
Renee D. Boss
Affiliation:
Department of Pediatrics, Division of Neonatology, The Berman Institute of Bioethics, The Johns Hopkins Children’s Center, Baltimore, MD, USA
*
Address for Correspondence: Kathryn Neubauer, Johns Hopkins Children’s Center, Department of Pediatric Palliative Medicine, 200 North Wolfe Street, Rubenstein 2015, Baltimore, MD 21287, USA. Tel: +(410) 502-1943; Fax: 410 614 5360. E-mail: Neubie@jhu.edu
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Abstract

CHD remains one of the leading causes of mortality of children in the United States. There is limited research about the experience of parents from the diagnosis of their child with CHD through the death of their child. A prior study has shown that adults with heart failure go through a series of four transitions: 1) learning the diagnosis, 2) reframing the new normal, 3) taking control of the illness, and 4) understanding death is inevitable. In our qualitative study, we performed semi-structured interviews with parents who have a child die of CHD to determine whether the four transitions in adults apply to parents of children with CHD. We found that these four transitions were present in the parents we interviewed and that there were two novel transitions, one that proceeded the first Jones et al transition (“Prenatal diagnosis”) and one that occurred after the final Jones et al transition (“Adjustment after death”). It is our hope that identification of these six transitions will help better support families of children with CHD.

Keywords

Familychildrenheart diseasecommunicationdecision-makingend of lifepalliative care
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 11 , November 2020 , pp. 1672 - 1678
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Copyright
© The Author(s), 2020. Published by Cambridge University Press

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