Cardiopatitis: A psychologist’s point of view

Elisabeth Utens

“It’s important parents accept their feelings and realise that their emotions, however extreme, are a normal part of the coping process,” says Dr Elisabeth Utens, Dutch senior researcher and clinical/child psychologist.

In this interview, Dr Utens discusses cardiopatitis and the need for psychological and social counselling for both patients and parents.

As a psychologist, and having read the article on cardiopatitis, what does the term mean to you?

Cardiopatitis, for me as a psychologist, refers to a normal reaction of parents to an extremely stressful and emotional situation (rather than to an illness). For all parents, the birth of an infant is an emotional time that brings about a mixture of feelings: joy, excitement, but also increased stress. When parents learn their child has congenital heart disease (ConHD), the normal transition to parenthood is burdened by the extra stress of having to adapt to this overwhelming situation, the fear of an uncertain future for their child and the demands of learning how to take care of their baby. Parents may be faced with physical demands (such as problems feeding the infant), financial costs (medical and transportation costs, lost income), and practical problems (day care for siblings, combining care with work) when taking care of an infant with ConHD.

Do all the parents of children with congenital heart disease suffer from cardiopatitis?

Yes. It’s a normal and natural reaction for parents to go through. It’s a period of working through the feelings of sadness, grief, anger, resentment, guilt, helplessness and hopelessness. This takes time. The intensity and length of emotional reactions varies between individuals. Caring for a child with a chronic illness has been identified as one of the most stressful experiences for any family, but parents of children newly diagnosed with ConHD report greater stress levels than parents of children newly diagnosed with other chronic illnesses (such as cystic fibrosis). The emotions clearly described in the article are more often seen in the short term.

Parental stress and coping styles, however, change over time and are influenced by the course of the illness. My own research in 2002 and Spijkerboer’s research in 2007 in Rotterdam showed that in the long-term, parents of children with operated ConHD in fact report better mental health (less distress, less somatic symptoms, less anxiety, sleeplessness or serious depression) and more adequate means of coping than parents of healthy children from the general population. Parents may develop other norms and values once the stressful time surrounding the cardiac diagnosis and procedure has passed. These experiences may have made parents stronger and led them to worry less about the futilities in life. This may also be called “posttraumatic growth”. It must be noted that in our study the long-term medical state of most patients was stable and most patients did not need re-hospitalisations. In times of renewed crises (periods with new cardiac procedures and hospitalisations), however, parents must go through an adjustment phase again.

What are the main factors that can influence the development of symptoms (distress, feelings of guilt, depression) related to cardiopatitis?  

All of the factors below play a role in determining how parents cope with the situation and their emotions:

• The individual’s personality characteristics (for instance, their coping style or their mental health before the birth of the child with ConHD)
• Marital status
• Satisfaction with their relationship with their partner
• Social support networks
• The number of (healthy?) children in the family
• Socio-economic status
• Financial and work situation
• Knowledge of congenial heart disease

Research from Lawoko & Soares in 2003 has shown that parental psychological reactions and stress are not related to the severity of the cardiac defect as such. Reduced quality of life in ConHD parents was found to be more influenced by factors such as financial burden, time needed to care for the ConHD child, distress and social isolation, rather than the severity of the disease.

A clinical implication of this is that hospitals need mental health professionals with expertise in supporting parents in tackling financial difficulties and fostering social integration, and who can provide psychological counselling. 

How can parents’ feelings affect the children?

The presence of a cardiac defect may alter and complicate parental attitudes towards their child, irrespective of the severity of the congenital cardiac malformation. Early difficulties with care giving or feeding may hamper mother-infant interaction and bonding. How parents react to the entire situation (diagnosis, hospitalisation, subsequent interventions) and caring for the child at home, can affect both the short- and long-term development outcomes of their children.
 
Studies into parents of ConHD children of all ages have shown that these parents are “vulnerable” in the development of establishing “normal relationships” with their children. Family variables such as parenting style, marital status and maternal mental health difficulties (maternal anxiety and distress) have been proven to be more powerful predictors of unfavourable behavioural outcomes in ConHD children than disease factors (such as severity of disease or cyanosis).

Both underestimating and overestimating the severity of the cardiac defect can have a negative influence on the development of the child. Underestimation may lead to non-compliance with hospital check-ups or asking too much of a child. Overestimation may result in overprotection and reduced physical activities (sports and leisure time activities), which may enhance social isolation, loneliness and depression in the child.

Can you offer any advice to parents of children with ConHD in order to encourage them and make them feel more secure when they receive their child’s diagnosis?  

It’s important that parents accept their feelings and realise that their emotions, however extreme, are a normal part of the coping process. Every parent responds in their own way, and so parental reactions may be out of step with each other. Fathers in particular may feel the need to be strong and may suppress their feelings. It’s important that parents share their concerns, fears and hopes, express their feelings, accept their limitations and don’t blame themselves for not being super-parents.

For the emotional development of ConHD children, it’s important to stimulate protective factors. This means, first of all, love and accept them as they are, and try to educate them as normally as possible. In this context, a 2008 study of Cohen showed that ConHD adolescents reported higher perceived parental acceptance than healthy adolescents. Parental acceptance had a stronger influence on the psychological wellbeing of these adolescents than parental control (which was perceived in fact as lower compared to that in healthy controls).

Other protective parenting styles may be: stimulating physical and social activities, networks and/or compensatory activities in children with ConHD. These factors may foster self-esteem and emotional resilience.

During the transition to adolescence it can be very difficult for parents to let go and to encourage autonomy in their child. Nonetheless, it’s very important that parents stimulate their teenagers gradually to take on responsibility for their own health and to foster independence in their child.

Why is it useful for parents to see a psychologist if they feel depressed?

Evidence is accumulating that most parents adapt successfully. In my opinion it’s very important that teams working with ConHD patients are multidisciplinary and able to offer specialised professional psychological and social counselling to parents and patients.

I don’t think every parent needs consultation of a psychologist when feeling depressed, since depressive feelings are part of the normal adjustment process. Formal counselling by a psychologist is suggested in cases where:

• Parents request it
• The parents’ feelings are overwhelming and out of proportion to the “normal adjustment -phase”
• Parents get stuck in the process of adjusting and coping
• There are difficult social and family circumstances
• There are additional psychological problems.

Is there anything you would like to add?    

The psychological needs of parents are not dependent on the seriousness of the heart disease of the child. Overall improvements in the status of ConHD patients may lead medical providers to underestimate the level of concern and stress experienced by families. Some authors state that parents of children with mild congenital heart defects may be at a higher risk for psychological problems because these parents often received less support than they needed. It’s important for medical health care providers to keep this in mind when treating children with ConHD.