Just a few decades ago, it was unimaginable that the majority of children with a congenital heart defect (CHD) could survive to adulthood. Diagnostic advances and better technological and medical management of CHD have contributed to a remarkable increase in survival rates. Therefore, more parents than ever before have the responsibility of caring for CHD survivors. Because CHD survival is a relatively new phenomenon, we need to know more about the psychological consequences of CHD for the child, parents, and family.
The primary aim of this dissertation was to provide knowledge about the well-being of mothers of children with CHD from pregnancy to 36 months after birth. Given that CHD represents a wide spectrum of defects, its secondary aim was to explore the relationship between the child’s CHD severity and maternal well-being. For these purposes, we applied a prospective case-cohort design with data from the nationwide Norwegian Mother and Child Cohort Study (MoBa) and data from the Department of Paediatric Cardiology at Oslo University Hospital in Norway.
The findings of this dissertation are presented in three papers. In Paper I, joy and life satisfaction remained intact among mothers of children with CHD, yet elevated feelings of anger were displayed among mothers of children with severe CHD at 6 months postpartum. Paper II is an extension of Paper I with follow-up at 36 months after delivery. Mothers of children with severe CHD reported lower well-being than the controls at 6 and 36 months after delivery. The findings in Paper III suggest that having a child with CHD does not increase the risk of reduced relationship satisfaction. Relationship satisfaction is reduced only when the child suffers from CHD with comorbid syndromes, and recovers to the norm of the cohort at 36 months after delivery.
Overall, the findings indicate that a multitude of stressors concerning the severely ill child can deplete the mother’s coping resources over time and lead to the deterioration of well-being. At the same time, these findings also suggest resilient abilities for the mothers of children with CHD, as they are not at high risk of reduced relationship satisfaction during the first years after birth. Additionally, the well-being levels among mothers of children with mild and moderate CHD appear to be unaffected in this study. Future studies should follow parents of children with CHD from pregnancy to adulthood to fully capture the complex trajectories of their well-being and the impact of the child’s disease severity. More knowledge is also needed about parental coping styles and their underlying mechanisms to promote optimal parental and family adaptation when caring for a child with CHD.