Parents of children with serious heart defects may be at risk of post-traumatic stress disorder

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Parents of children with “critical” congenital heart defects – which require at least one cardiac surgery – are at high risk for mental health problems, particularly post-traumatic stress disorder (PTSD), anxiety and depression, according to research in Journal of the American Heart Association.

Researchers reviewed published data from 10 countries. Among parents of children with critical congenital heart defects, results showed:

  • Up to 30% had symptoms consistent with a diagnosis of PTSD, with more than 80% showing significant symptoms of trauma
  • 25% to 50% reported elevated symptoms of depression, anxiety or both
  • 30% to 80% reported experiencing severe psychological distress

In comparison, the prevalence of PTSD in the US general population is 3.5%, with 18% meeting criteria for any anxiety disorder in the last year, and 9.5% meeting criteria for any mood disorder.

Researchers say 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.

Sarah Woolf-King

For these parents, “there is a real need for additional research on the severity, the course and the persistence of mental health problems over time,” says Sarah Woolf-King, senior study author and assistant professor in the psychology department at Syracuse University in New York City, USA.

She notes that these problems, if untreated, can adversely affect the 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 says, “and one thing that we propose is integrating mental health screening and treatment into paediatric cardiology care. Healthcare providers on the front line of treatment for these parents could play a significant role in connecting them to care.”

This type of integrated care model is more common in other medical disciplines, Woolf-King says, citing paediatric oncology as an example in which recommendations have been established as part of standard care to assess mental health routinely and over time for parents of children with cancer.

Woolf-King has a first-hand understanding of this experience as a parent. Her son, now age 4, was born with a congenital heart defect and had open heart surgery at 9 weeks old. “It was one of the loneliest, most terrifying times of my life,” she said, and it contributed to her interest in this research topic.

The study noted that mothers are disproportionately affected. “We are not 100% clear about why,” Woolf-King says, “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.”

The review covered 30 studies culled from cardiac, nursing, paediatric and social science journals published between 1984 and 2015 in the United States, Australia, Switzerland, Norway, the Netherlands, the United Kingdom, Canada, China, Finland and Italy.