"Will she live a long happy life?" Parents' concerns for their children with Fontan circulation. (March 2018)

• Record Type: Journal Article
• Authors: du Plessis, Karin; Peters, Rebecca; King, Ingrid; Robertson, Kirsty; Mackley, Jonathan; Maree, Rachel; Stanley, Tracy; Pickford, Louise; Rose, Brian; Orchard, Matthew; Stewart, Helen; d'Udekem, Yves
• Is Part Of: IJC heart & vasculature. Volume 18(2018)
• Page Start: 65
• Page End: 70
• Publication Date: 2018-03
• Subjects: AVSD Atrioventricular Septal Defect -- ANZFAC Australian and New Zealand Fontan Advisory Committee -- ccTGA Congenitally Corrected Transposition of the Great Arteries -- DILV Double Inlet Left Ventricle -- DORV Double Outlet Right Ventricle -- HLHS Hypoplastic Left Heart Syndrome -- INR International Normalized Ratio -- PLE Protein Losing Enteropathy -- PTSD Post-Traumatic Stress Disorder (PTSD); Congenital heart disease -- Fontan -- Parents of children with a Fontan circulation -- Qualitative research; Cardiovascular system -- Diseases -- Periodicals; Cardiovascular system -- Pathophysiology -- Periodicals; 616.1005
• DOI: 10.1016/j.ijcha.2018.02.008
• Languages: English
• ISSNs: 2352-9067

Abstract

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 ( 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. Highlights: Fontan parents' greatest concern for their child is fear of death and well-being. Clear communication around outcomes could help alleviate these fears. It highlights the need for psychological support for parents and young people.