A Study on the Stress of CHD Families….or You are Not Alone Part II

If you missed the first part of this short series on the emotional toll of having a child with CHD, you can read it here.

Where Parent’s May Look for Relief

This interesting article goes on to state that the early days of learning of the diagnosis are often very stressful on the families, especially the caregiver.  The doctor’s conducting this study explain that “The initial stage of diagnosis is a time when there is a lack of information and a groping for the characteristics of the illness.”  This initial stage of a lack of information leads to a search for resources and support.  Families will look for all information available from medical professionals, books, social support groups, and while not mentioned specifically in the article, I would like to add online information.

Additionally, the study found that a large number of these families turned to religion for support.  Religion can offer emotional relief as well as a hope in a higher power which may be able to help heal a child.

Lastly, the parents will look to other patients or caregivers of patients.  This step appears to help in easing the stress and emotional upheaval.  Finding out what to expect, how to care, where to seek care, and how a CHD has affected others is often an important activity for CHD parents.  One mother said, “I think other patients’ experiences are the most directly relevant.”

Maintaining Family Function

Researchers found that all families attempt to create a normal family and home environment where children, heart children and siblings alike, can grow up step-by-step and still maintain other family functions.  This process involves reframing or redefining the meaning of the illness, Unifying the family as they come to terms with the process and prepare for surgery, and nurturing normality.

When families have a baby with CHD, they must reframe the illness in their mind to take on some kind of meaning.  The majority of participants in this study reframed the illness by assigning a higher value on life.  Parents admitted that having a critically ill child that faced open heart surgery created a sense that life was more meaningful.  One mother put it beautifully when she stated, “I feel this is one of the most significant things that’s ever happened to us, even more than our marriage (laughter). I do think he has helped us to grow inside, because we hadn’t met any life and death issue up
to now. So, he gave us a chance to face such an issue. And he is such an endearing baby to us. Since the time I gave birth, we’re inseparable.”  Many families are cemented together through the trials faced with a CHD baby.

This uniting extends to the entire family.  The family of the CHD baby understands that their position as support to each other is important.  Spouses generally become more concerned for each other and even siblings showed great concern over each other and the child facing an upcoming surgery.

Lastly, it appears that heart families have a tendency to nurture normality.  Many families actually “forgot” about the heart condition during normal day-to-day activities.  They tend to have a desire to encourage activity with those outside the CHD world and they have a desire to raise their child normally.

Conclusion

This article, in discussing the ramifications of their findings, corroborated the findings of Jeffers, a researcher and cardiologist in the field.  Jeffers stated that  “He discovered that holding the concept of ‘it will be better’ is a great support during the decision-making process.”

The article ends by stressing that:

“When a family is confronted with a child with CHD having a need to              undergo heart surgery, the whole family is facing a stressful decision-making process. According to the results of this study, it is obvious that the caregiver and their whole family experience psychological distress, role re-organization and remodelling of their family functioning.”

Because of this it is suggested that families with a newly diagnosed CHD baby should be offered emotional support, information on what to expect and how to treat the baby, and a strong social support system for both emotional needs and medical needs.

Shu-Fan, Lan, Mu Pei-Fan, and Hsieh Kai-Sheng. “Maternal experiences making a decision about heart surgery for their young children with congenital heart disease.” Journal of Clinical Nursing 16.12 (2007): 2323-2330. Academic Search Premier. EBSCO. Web. 26 Feb. 2010.

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