Article Abstract

Current research status on the psychological situation of parents of children with congenital heart disease

Authors: Sabina Biber, Caroline Andonian, Jürgen Beckmann, Peter Ewert, Sebastian Freilinger, Nicole Nagdyman, Harald Kaemmerer, Renate Oberhoffer, Lars Pieper, Rhoia Clara Neidenbach

Abstract

Congenital heart diseases (CHD) are a leading cause of morbidity in children with a high impact on the psychological health of parents. Possible short-term and long-term psychological problems among parents are addressed in the current paper. The diagnosis of CHD paired with subsequent surgical and interventional treatment and prolonged hospital stays cause acute psychological distress and can lead to posttraumatic stress disorders (PTSD). As the disease course progresses, the impact on parents’ health tends to decrease, but the risk of developing long-term psychological issues remains high. Studies have focused mainly on stress and other distressing symptoms without explicitly addressing the effects of a CHD diagnosis on the family system. Since the social environment may play an important role in parent’s life, it may be useful to conduct studies to address these issues. In particular, the psychological situation of the father and the impact of the child’s disease on the different dimensions of the father’s life, such as parenting skills and influences on the parental relationship, have been largely neglected. Recent research has also disregarded the impact of CHD on siblings of the affected child. Research on chronic diseases in general has shown that the children’s age and severity of the disease are related to an increased level of stress. Given the severity of CHD, anxiety and depression were higher in parents with children with more severe conditions. In addition, the results suggest that a positive construction of the parent-child relationship (attachment and bonding) is impaired, especially in mothers. Mothers reported worries and concerns about the challenging tasks they would face after learning about their child’s CHD and how they can deal with their child’s needs. It has also been shown that the child’s illness has a negative impact on the whole family system, including the parent’s relationship. Impairments on the parental relationship were perceived differently among mothers and fathers. Thus, there is high need for major changes to be identified, developed and implemented in the psychological care of parents with chronically ill children. So far, research has focused more on the psychological status of parents with chronically ill children, but less research has closely examined the effects of a child’s CHD on its parent’s mental health even though there is a high demand in additional support. A holistic treatment approach should include professional parental support, especially during children’s hospitalization, information on the home care resources and services (especially respite services) and psychological support for parents.