Parents of children with congenital heart defects may experience mental health issues

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Parents of children with critical congenital heart defects have an elevated risk of trauma, depression and psychological distress, particularly in the weeks and months after their children undergo cardiac surgery, according to a systematic review.

Lead researcher Sarah E. Woolf-King, PhD, MPH, of Syracuse University in New York, and colleagues published their results online Feb. 1 in the Journal of the American Heart Association.

“The parents need extra support and mental health treatment that is feasible and accessible, and one thing that we propose is integrating mental health screening and treatment into pediatric cardiology care,” Woolf-King said in a news release. “Healthcare providers on the front line of treatment for these parents could play a significant role in connecting them to care.”

Each year, nearly 40,000 children are born with congenital heart defects, which are the most common birth defect in the U.S. Approximately one-quarter of those children have critical congenital heart defects, which the researchers defined as those that require at least one cardiac surgery during the first year of life. They added that the life expectancy after surgeries has increased in the past decade.

For this study, the researchers conducted a systematic review of medical literature published through Jan. 1, 2016 in an English-language journal. Studies were required to include parents with a child who had cardiac surgery for a congenital heart defect and a quantitative assessment of parents’ psychological functioning.

The researchers identified 30 articles that met their inclusion criteria, including 14 cross-sectional studies and 16 longitudinal studies. Of the studies, 17 had a low risk of bias, 12 had a medium risk of bias and one had a high risk of bias. The studies were published from 1984 to 2015 in the U.S. (7), Australia (6), Norway (4), Switzerland (3), The Netherlands (3), the United Kingdom (3), Canada (1), China (1), Finland (1) and Italy (1).

As many as 30 percent of the parents had symptoms consistent with a diagnosis of posttraumatic stress disorder (PTSD). Meanwhile, more than 80 percent of parents had clinically significant symptoms of trauma, 25 percent to 50 percent had clinically elevated symptoms of depression and/or anxiety and 30 percent to 80 percent experienced severe psychological distress.

As a comparison, the researchers noted that 3.5 percent of U.S. adults have PTSD, while 18 percent met the criteria for an anxiety disorder in the past year, 9.5 percent met the criteria for a mood disorder and 10 percent to 15 percent met the criteria for postpartum depression.

Mothers were more likely than fathers to have mental health problems following their child’s surgery, according to the researchers.

“We’re not 100 percent clear about why, but we think it has to do with, one, the first surgery typically occurs in the postpartum period when mothers are already at increased risk for mental health issues and, two, the care of the sick child can disproportionately fall on the mother,” Woolf-King said in a news release.

This analysis had a few limitations, according to the researchers, including that the studies were highly variable in certain areas such as sample size, type of measurements, comparison groups and sociodemographics. They also mentioned it was unclear how to compare the findings from different countries and medical care settings. In addition, they noted that most studies relied on mental health symptoms and/or general indicators of psychological distress rather than mental health diagnosis.

“Parents of children with [critical congenital heart defects] are at elevated risk for mental health problems,” the researchers wrote. “There is an urgent need for additional research on the severity, course, persistence, and moderators of these mental health problems over time, and for the development and testing of screening approaches and interventions that can be feasibly delivered in the context of ongoing pediatric cardiac care. Such research would connect [parents of children with critical congenital heart defects] to appropriate care, ameliorate psychological symptoms and suffering, and consequently enhance the overall care and well-being of children with  [critical congenital heart defects].”