Diagnosis to death: family experiences of paediatric heart disease
| Autor: | Mithya Lewis-Newby, Erin P. Williams, Elliott Mark Weiss, Renee D. Boss, Pamela Donohue, Kathryn Neubauer |
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| Rok vydání: | 2020 |
| Předmět: |
Adult
Parents medicine.medical_specialty Palliative care Heart disease Prenatal diagnosis 03 medical and health sciences 0302 clinical medicine 030225 pediatrics Medicine Humans Family 030212 general & internal medicine Psychiatry Child Qualitative Research Heart Failure Death family business.industry digestive oral and skin physiology Heart General Medicine Cognitive reframing medicine.disease United States New normal Pediatrics Perinatology and Child Health Cardiology and Cardiovascular Medicine business Qualitative research |
| Zdroj: | Cardiology in the young. 30(11) |
| ISSN: | 1467-1107 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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