Children with single ventricle congenital heart defects: An interpretative phenomenological analysis of the lived parent experience

Objectives: Congenital heart defects (CHD) can be detected during routine antenatal scans or go undiagnosed until birth. Parents of children with Single Ventricle CHD (SVCHD) have a complex experience. This study aimed to explore the lived experiences of parents of children with SVCHD from diagnosis through to adolescence. Design: Interviews were conducted with 12 parents whose children had completed the Fontan procedure. Interpretative Phenomenological Analysis (IPA) identified themes across parents' accounts. Results: Data were analysed into three superordinate themes of super parents, striving for normality and accepting SVCHD and their role. Through accepting SVCHD, becoming experts, and taking responsibility for the management of their child's physical healthcare, parents developed their own sense of normality. Following distress at the point of diagnosis, parents found their own way of accepting and integrating SVCHD into family life and regained a sense of control and normality within the family. Conclusions: Transition points such as starting nursery, final surgery, puberty, and reaching adulthood are key time points when parents may struggle with their changing roles and the gradual shift of responsibility and independence onto their children. There are implications for supporting parents to educate their children in terms of the management and long-term prognosis of their condition, especially when the child with SVCHD enters puberty or moves into adult services where they gain agency of their condition and its management. The role of healthcare professionals promoting emotional wellbeing and providing support to families during significant periods is discussed.