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

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.

Parenting a child with Marfan syndrome: Distress and everyday problems

“…T A B L E 3 DT-P everyday problem-item scores of mothers and fathers of a child with MFS compared to control-group mothers and fathers of healthy children Beelen, Dekker, et al, 2019;. Parents of children with a variety of other chronic diseases have been shown to often suffer from anxiety and depression (van Oers et al, 2014), parenting stress (Cousino & Hazen, 2013) and parental burden (Biber et al, 2019;Jackson et al, 2015;Jackson et al, 2018). In previous studies in which parental distress was measured by the DT-P compared to control-group parents, high overall distress and everyday problems were found in parents of children with cancer (Schepers et al, 2018), mucopolysaccharidosis type III (Conijn et al, 2019), and in children needing home parenteral nutrition (van Oers et al, 2019).…”

“…Parents suffered from anxiety and depression (van Oers et al, 2014), parenting stress (Cousino & Hazen, 2013) and parental burden (Biber et al, 2019;Jackson, Frydenberg, Liang, Higgins, & Murphy, 2015;Jackson, Higgins, Frydenberg, Liang, & Murphy, 2018). Moreover, parents of a child with cancer (Schepers et al, 2018), home parenteral nutrition (van Oers et al, 2019), mucopolysaccharidosis type III (Conijn, Nijmeijer, van Oers, Wijburg, & Haverman, 2019) inflammatory bowel disease (Diederen, Haverman, Grootenhuis, Benninga, & Kindermann, 2018), Down syndrome (Marchal et al, 2017) and a chronic disease of any type (van Oers, Schepers, Grootenhuis, & Haverman, 2017), screened by the Distress thermometer for parents of a chronically ill child (DT-P) (Haverman, van Oers, Limperg, Hijmans, et al, 2014;Haverman, van Rossum, van Veenendaal, van den Berg, et al, 2013) reported significantly higher distress and/or more often everyday problems compared to control-group parents.…”

The relationship between hopelessness and perceived social support levels of parents with children with congenital heart disease

“…SS is the sum of the material and spiritual aids that are provided by relatives and friends to increase the resilience of the individual to stress, to protect the mental/physical well-being and to prevent the development of psychopathology against the problem (10). The lack of adequate SS mechanisms in parents with children with CHD may increase the risk of developing psychological disorders (7).…”

“…Parents are faced with short-or long-term psychological mood changes with the start of diagnosis and treatment procedures. Hopelessness is one of them (7). Hopelessness is defined as a set of cognitive schemas that contain negative expectations about the individual and his/her future life (8).…”

The Association of Positive or Negative Religious Coping Methods With Psychological Distress and Quality of Life Among Parents of Infants With Congenital Heart Disease

“…However, these advances in medical technology have not been accompanied by an improved understanding of the psychological effects on the families of infants with CHD. Parents of infants with CHD, especially mothers, are more likely to suffer from mental health problems and psychological distress because of heart surgery, extended hospital stays, feeding difficulties, and financial and emotional stress (4)(5)(6). Additionally, these psychological problems will affect the quality of parental care for infants and their quality of life.…”