Mental health concerns among parents of children with heart problems
Thursday, March 09, 2017
Dealing with sick children can be challenging for parents. Usually, parents can handle common short-lived colds, viruses and other childhood illnesses. But parents of children born with serious conditions, such as heart defects, are particularly vulnerable to ongoing stress.
Congenital heart defects (CHDs), the most common birth defects, affect nearly 1 percent of ― or about 40,000 ― births per year in the United States. About 25 percent of babies with a CHD have a critical CHD, and they generally need surgery or other procedures in their first year of life.
Improvements in detection and treatment have allowed many babies born with a CHD to live longer lives, and many are expected to live well into adulthood. One-year survival for infants with critical CHDs has been improving over time, yet mortality remains high.
A study evaluating emotional distress, depression, and quality of life in parents of infants with severe CHD revealed that parents of these newborns, especially mothers, need psychological support during their children’s hospitalizations. In this study, stress and depression levels were significantly higher in mothers than in fathers (stress: 81.8 percent mothers vs. 60.6 percent fathers; depression: 45.7 percent mothers v. 20.0 percent fathers).
In fact, the quality of life of parents of chronically ill children has become increasingly important.
In 2008, a cross-sectional study was conducted in Alexandria, Egypt, in the two main hospitals that treat children with heart diseases to evaluate the health-related quality of life (HRQOL) of parents whose children were suffering from heart diseases.
Results of this study support the premise that parents of the children with minor illness experienced a better HRQOL than those of the children with heart disease. Parents of the children with heart disease reported a lowered sense of well-being with regard to energy and general health, limitations in function due to physical and emotional reasons.
A recent study went even further, suggesting that mothers of children born with serious heart defects often have symptoms of post-traumatic stress disorder (PTSD), anxiety, or depression. Researchers reviewed published data from 10 countries, including 30 studies gathered from a variety of cardiac, nursing, pediatric and social science journals with samples of parents from the following countries: the United States, Australia, Switzerland, Norway, the Netherlands, the United Kingdom, Canada, China, Finland and Italy. The publication dates of the articles ranged from 1984 to 2015, with the majority (73 percent) published in the past 10 years.
The researchers found that parents of children with chronic CHDs are at an elevated risk for psychological problems, particularly in the immediate weeks and months following cardiac surgery.
Up to 30 percent of these parents have symptoms consistent with a diagnosis of PTSD, with more than 80 percent presenting with clinically significant symptoms of trauma; 25 percent to 50 percent of parents reported clinically elevated symptoms of depression and/or anxiety; and 30 percent to 80 percent reported experiencing severe psychological distress. The findings also note that mothers are at greater mental health risk than fathers.
Implications of these results suggest that parents of children with chronic CHDs may benefit from mental health screenings incorporated into ongoing cardiac pediatric care so that health care professionals could recommend appropriate mental health services, addressing parents’ acute psychological needs and enhance their ability to cope with the many ongoing stressors they face. Such screenings would also enable health care professionals to more closely monitor the types of health problems most commonly experienced by parents.
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