Parents of children with critical congenital heart defects are at high risk for mental health problems such as post-traumatic stress disorder, anxiety and depression, according to a new study.
Researchers who reviewed published data from 10 countries found that up to 30 percent of parents of children with critical congenital heart defects had symptoms of PTSD and more than 80 percent had significant symptoms of trauma. Another 25 percent to 50 percent reported elevated symptoms of depression, anxiety or both, and 30 percent to 80 percent reported experiencing severe psychological distress.
In comparison, the prevalence of PTSD in the U.S. general population is 3.5 percent, with 18 percent meeting criteria for any anxiety disorder in the last year, and 9.5 percent meeting criteria for any mood disorder.
Researchers also found that mothers are disproportionately affected. “We’re not 100 percent clear about why,” said Sarah Woolf-King, Ph.D., senior study author and assistant professor in the psychology department at Syracuse University in New York. “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.”
Researchers said the study is a first step to draw more attention to this overlooked group of parents whose mental health is often taxed by coping with their children’s medical appointments, cardiac procedures, long hospital stays, digestive or feeding issues and increased risk for major respiratory illnesses — all of which amount to extensive financial, emotional and familial costs.
“There is a real need for additional research on the severity, course and persistence of mental health problems over time,” Woolf-King said.
If untreated, the problems can adversely affect parents and their ability to care for their children months, or even years, after surgery.
“The parents need extra support and mental health treatment that is feasible and accessible,” Woolf-King said. “One thing that we propose is integrating mental health screening and treatment into pediatric cardiology care. Healthcare providers on the front line of treatment for these parents could play a significant role in connecting them to care.”
Congenital heart defects are the most common birth defects in the United States, affecting nearly 40,000 births each year. Of these children, 25 percent have critical congenital heart defects that require one or more cardiac surgeries in the first year of life, according to the Centers for Disease Control and Prevention.
The review — published in the Journal of the American Heart Association — covered 30 studies culled from cardiac, nursing, pediatric and social science journals published in 1984-2015 in the United States, Australia, Switzerland, Norway, the Netherlands, the United Kingdom, Canada, China, Finland and Italy.