"Will she live a long happy life?" Parents' concerns for their children with Fontan circulation
Authordu Plessis, K; Peters, R; King, I; Robertson, K; Mackley, J; Maree, R; Stanley, T; Pickford, L; Rose, B; Orchard, M; ...
Source TitleInternational Journal of Cardiology: Heart and Vasculature
PublisherELSEVIER IRELAND LTD
Document TypeJournal Article
Citationsdu Plessis, K., Peters, R., King, I., Robertson, K., Mackley, J., Maree, R., Stanley, T., Pickford, L., Rose, B., Orchard, M., Stewart, H. & d'Udekem, Y. (2018). "Will she live a long happy life?" Parents' concerns for their children with Fontan circulation. IJC HEART & VASCULATURE, 18, pp.65-70. https://doi.org/10.1016/j.ijcha.2018.02.008.
Access StatusOpen Access
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 (N = 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.
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