Coping in parents of children with congenital heart disease

Due to the huge medical advances in pediatric cardiology and pediatric cardiac surgery over the past 30 years, survival rates of children with congenital heart disease (ConHD) have increased enormously. Nowadays 90% of these children survive into adulthood (Marelli, Mackie, Ionescu-Ittu, Rahme, & Pilote, 2007). When parents learn that their infant has ConHD, they usually experience overwhelming distress. The normal transition process to parenthood is burdened by the extra stress of having to adapt to this overwhelming situation. This is accompanied by feelings of sadness, grief, anger, resentment, guilt, helplessness and hopelessness, the fear of an uncertain future for their child and the demands of having to learn how to take care of their infant. When parents need to prepare for one or more cardiac operation(s), the distress may become even more overwhelming. To deal with all these feelings and changes in levels of distress, parents have to use coping strategies. In this chapter, we start in the introduction by giving a brief review of empirical research findings of studies into stress in parents with children with ConHD (§1a and §1b). Subsequently a theoretical model regarding stress and coping will be presented (§1c) and finally empirical research findings of studies into coping in parents of children with ConHD will be presented (§1d). Secondly, we will focus on the relationship between the disease severity and parental stress and coping (§2) and changes in parental stress and coping over time (§2a), with the description of empirical studies into changes in parental stress and coping over time (§2b). Thirdly, individual differences in parental coping styles will be discussed (§3). Differences between maternal and paternal coping styles and the levels of parental psychopathology will be described. Fourthly, we will focus on the influence of social support on coping (§4). Finally we will discuss some clinical implications (§5).