From Diagnoses to Ongoing Journey: Parent Experiences Following Congenital Heart Disease Diagnoses

Abstract

Despite improved survival among children with congenital heart disease (CHD), the risk of psychosocial difficulties remains largely unchanged with an increased emphasis of improving support for parents as a mechanism to optimize outcomes. Objective Using qualitative and quantitative methods, the current cross-sectional study examined parents' experiences at the time of their child's diagnosis, what they thought helped their child recover, barriers to support, and identified needs for future models of care. Method The sample included 26 parents (22 mothers, 3 fathers, and 1 mother/father pair) of children with CHD, ranging in age between 6 months and 4 years with a mean age of 2 years. Results Qualitative results were organized around five themes: (a) They (medical team) saved my child's life, (b) My child is going to be okay, (c) Not out of the woods, (d) Optimizing support for my child and myself, and (e) What still gets in the way. Parents uniformly expressed a need for greater mental health support for their children as well as programs to improve parents' skill and confidence, with no difference between age groups (< 2 years and > 2 years of age). Common barriers to service included distance and time off work. Conclusion Parents' experiences informed both acute and long term implications following CHD diagnoses, and highlight current gaps in mental health care. Direction for clinical care and improved intervention opportunities are discussed.

Parental experience of the neuromotor development of children with congenital heart disease: an exploratory qualitative study

“…Parents included in our study experienced loss in confidence in themselves and their children. These findings coincide with results by many other researchers reporting that parents of children with complex CHD undergo intense emotional stress, anxiety, and perceive hopelessness [ 15 , 34 – 37 ].…”

“…Although this reaction is very understandable, one could argue that parents tend to overprotect their CHD children, which might lead to short and longer-term developmental risks: Could motor delay in CHD children be partially due to parents’ overprotectiveness and their fear of over-straining their children during physical activities? Majnemer et al [ 42 ] and Williams et al [ 15 ] support this assumption. Our participating parents reported that they tended to handle their children very carefully, to avoid uncomfortable positions such as prone, and to watch their children constantly.…”

“…Parents reported communication to be an area of conflict both within the healthcare teams and between themselves and specialists. Generally, parents value medical details and report the importance of in-depth information provided by healthcare teams for them to learn as much as they can about their children’s medical condition, treatment, and ways to optimize their children’s outcome [ 15 , 34 ]. This corresponds to the need for more information exchange referred to by our participating parents.…”

“…This might serve as an additional cause for exhaustion. The importance of parental support, the confusion about parents’ roles and the problem of information transparency has been well described previously [ 15 , 20 , 48 ]. Realistically, the role of a medical coordinator cannot be fulfilled by a single person.…”

Experiences of Mothers Facing the Prognosis of Their Children with Complex Congenital Heart Disease

“…The mothers of children with CHD (aged 7 months to 14 years) commented on the burden of childcare and tension resulting from the disease and difficulties of the care process [ 13 ]. In addition, mothers of children with CHD (between 6 months and 4 years) described their appreciation of the healthcare team on initial diagnosis, their possible optimism surrounding medical outcomes, and feelings of general uncertainty concerning the child’s upcoming medical care [ 14 ].…”