"Will she live a long happy life?" Parents' concerns for their children with Fontan circulation.
Int J Cardiol Heart Vasc
; 18: 65-70, 2018 Mar.
Article
em En
| MEDLINE
| ID: mdl-29876506
ABSTRACT
BACKGROUND:
Families of children at the worst end of the congenital heart disease endure a significant burden which is often not clearly delineated in the clinical literature. We examined the greatest concerns of parents whose children have a Fontan circulation.METHODS:
Parents (Nâ¯=â¯107) of children in the Australian and New Zealand Fontan Registry completed online surveys with open-ended and closed questions. A qualitative method approach incorporating thematic analyses was used.RESULTS:
The greatest concerns for parents of a child with a Fontan circulation were centered on fear of death for their child and psychosocial well-being, followed by lesser themes around anti-coagulation use, pregnancy and financial burdens.CONCLUSIONS:
Fear of death and the psychological well-being of their children were the main parental concerns. It highlights the need to clearly communicate information on outcomes to families, and the need for family-focused psychological interventions to improve the psychosocial functioning of both parents and young people.
ANZFAC, Australian and New Zealand Fontan Advisory Committee; AVSD, Atrioventricular Septal Defect; Congenital heart disease; DILV, Double Inlet Left Ventricle; DORV, Double Outlet Right Ventricle; Fontan; HLHS, Hypoplastic Left Heart Syndrome; INR, International Normalized Ratio; PLE, Protein Losing Enteropathy; PTSD, Post-Traumatic Stress Disorder (PTSD); Parents of children with a Fontan circulation; Qualitative research; ccTGA, Congenitally Corrected Transposition of the Great Arteries
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Base de dados:
MEDLINE
Tipo de estudo:
Qualitative_research
Idioma:
En
Ano de publicação:
2018
Tipo de documento:
Article