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Diagnosis to death: family experiences of paediatric heart disease.
Neubauer, Kathryn; Williams, Erin P; Donohue, Pamela K; Weiss, Elliott M; Lewis-Newby, Mithya; Boss, Renee D.
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  • Neubauer K; Department of Pediatric Palliative Medicine, The Johns Hopkins Children's Center, Baltimore, USA.
  • Williams EP; Columbia University Irving Medical Center, Vagelos College of Physicians and Surgeons, New York, NY, USA.
  • Donohue PK; The Berman Institute of Bioethics, Baltimore, MD, USA.
  • Weiss EM; Department of Pediatrics, The Johns Hopkins Children's Center, Baltimore, MD, USA.
  • Lewis-Newby M; 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.
  • Boss RD; 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.
Cardiol Young ; 30(11): 1672-1678, 2020 Nov.
Article en En | MEDLINE | ID: mdl-32829727
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.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Familia / Insuficiencia Cardíaca Tipo de estudio: Diagnostic_studies / Prognostic_studies / Qualitative_research Límite: Adult / Child / Humans País/Región como asunto: America do norte Idioma: En Revista: Cardiol Young Asunto de la revista: ANGIOLOGIA / CARDIOLOGIA / PEDIATRIA Año: 2020 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Reino Unido
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Familia / Insuficiencia Cardíaca Tipo de estudio: Diagnostic_studies / Prognostic_studies / Qualitative_research Límite: Adult / Child / Humans País/Región como asunto: America do norte Idioma: En Revista: Cardiol Young Asunto de la revista: ANGIOLOGIA / CARDIOLOGIA / PEDIATRIA Año: 2020 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Reino Unido