Parents of children with severe heart defects at risk for anxiety, depression, PTSD, stress

Parents of children with severe congenital heart disease are more likely to experience mental health problems, including PTSD, anxiety, depression and stress, according to recent findings.

“Parents of children with [critical congenital heart defects] are at high risk for mental health morbidity — coping with their children’s medical appointments and cardiac procedures, long and multiple hospitalizations, digestive and/or feeding issues, and increased risk for major respiratory illnesses — all of which amount to extensive financial, emotional and familial costs,” Sarah E. Woolf-King, PhD, MPH, assistant professor of psychology at Syracuse University, and colleagues wrote.

The researchers conducted a systematic review of 30 international studies on the mental health of parents whose children had critical congenital heart disease.

Data on t rauma

In an Australian study that included 132 parents, 35% of mothers and 18% of fathers whose children had cardiac surgery for congenital heart disease experienced acute stress disorder 1 month after their child was discharged from the hospital. Another study showed that 83% of parents (n = 29) whose children had undergone cardiac surgery met criteria for PTSD or acute stress disorder.

In a Swiss study, about 15% of parents met criteria for acute stress disorder upon discharge of their children who had undergone cardiac surgery, 25% met criteria for PTSD 1 month after surgery, 10% of fathers and 15% of mothers still met criteria for PTSD 6 months after surgery.

In this same cohort, trauma was associated with low mental health quality of life in both mothers (OR = 8.99; 95% CI, 3.57-22.61) and fathers (OR = 18.15; 95% CI, 4.75-69.39) at hospital discharge.

Anxiety and depression

In a study of 92 women, 25% reported “abnormal” levels of anxiety and 20% reported levels of depression “outside the normal range” during their child’s hospital stay for cardiac surgery.

Several longitudinal studies found that symptoms of anxiety and depression were high during postsurgical hospital stays for parents with children with congenital heart disease (P < .05), but declined in the weeks after discharge.

Three studies that used data from the Norwegian Mother and Child Cohort study did not find significant decreases in parental depression over time. At 6 months postpartum, 29% of mothers whose children had severe congenital heart disease had indications of severe clinical depression and were approximately 2.5 times more likely to be depressed vs. mothers whose children had mild/moderate congenital heart disease.

“In sum, the data on anxiety and depression indicated that [parents of children with critical congenital heart disease] are at significant risk for both; however, the persistence of these symptoms over time is unclear,” the researchers wrote.

Psychological stress and distress

The prevalence of distress in parents while their children were still in the hospital for cardiac surgery ranged from 30% to 80% across several studies. Additionally, parents were found to be significantly more stressed than the control parents. Distress was highest during surgery and postsurgical hospitalization (P < .001), but symptoms decreased over time (P for trend < .05) and was not different from controls 12 months after surgery.

“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,” the researchers wrote. “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].” – by Cassie Homer

Disclosure: The researchers report no relevant financial disclosures.