Diagnosis to death: family experiences of paediatric heart disease.
Cardiol Young
; 30(11): 1672-1678, 2020 Nov.
Article
em En
| MEDLINE
| ID: mdl-32829727
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.
Palavras-chave
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Família
/
Insuficiência Cardíaca
Tipo de estudo:
Diagnostic_studies
/
Prognostic_studies
/
Qualitative_research
Limite:
Adult
/
Child
/
Humans
País/Região como assunto:
America do norte
Idioma:
En
Revista:
Cardiol Young
Assunto da revista:
ANGIOLOGIA
/
CARDIOLOGIA
/
PEDIATRIA
Ano de publicação:
2020
Tipo de documento:
Article
País de afiliação:
Estados Unidos