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

Abstract

BackgroundFamilies 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.MethodsParents (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.ResultsThe 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.ConclusionsFear 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.

Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement

“…People with a Fontan circulation aim to live full and active lives outside their clinical appointments, and consideration of their wellbeing, mental health, and broader social and cultural context is important. The greatest concerns focus on uncertainty about life expectancy [25,27] and exposure to hardship and suffering. Referral to appropriate services and linkage with community-based supports are of benefit to patients and families.…”

Hospital resource utilization in a national cohort of functionally single ventricle patients undergoing surgical treatment

“…Parents' concerns go beyond survival into how their daily life and that of their children will be affected, among other things, by time spent in the hospital. 22 , 27 …”

“…This gap in knowledge limits clinicians' ability to evaluate optimal management, policy makers' ability to allocate resources, and families' opportunities to adjust and plan to what their expected real-life challenges would be, despite this latter point being a major source of anxiety for parents. 22 …”

The Australian and New Zealand Fontan Registry Quality of Life Study: Protocol for a population-based assessment of quality of life among people with a Fontan circulation, their parents, and siblings

“…10 Evidence suggests that psychological and social constructs, such as greater psychological stress, fewer social supports and lower socioeconomic resources, may play a potent role in determining QOL outcomes among people with complex CHD [16][17][18][19][20][21][22] and their parents. 21 23 24 Qualitative studies also highlight the role of illness perceptions and coping skills in fostering well-being among Fontan patients 25 26 and their parents 27 ; however, the extent to which these variables influence sibling QOL is not yet known. Additionally, QOL data are increasingly needed to determine the benefit-burden ratio of advances in clinical care.…”