"Will she live a long happy life?" Parents' concerns for their children with Fontan circulation

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du Plessis, K; Peters, R; King, I; Robertson, K; Mackley, J; Maree, R; Stanley, T; Pickford, L; Rose, B; Orchard, M; ...Date
2018-03-01Source Title
International Journal of Cardiology: Heart and VasculaturePublisher
ELSEVIER IRELAND LTDAffiliation
Paediatrics (RCH)Metadata
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du 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 Status
Open AccessAbstract
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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