According to a recent study by scientists at Stanford Medicine, post-traumatic stress disorder is common among parents of children with serious heart problems. The research focused on families whose child or teen received an automatic defibrillator, a surgically implanted device that detects dangerously irregular heart rhythms and delivers a small shock to correct them.
Nearly half of parents whose children received such a device met the criteria for PTSD, according to the study published in the medical journal Heartbeat. Although the study protocol did not include diagnostic interviews with each parent, the number and severity of symptoms that parents reported on the study questionnaires were consistent with what is seen in the disorder.
These parents may have seen their child in cardiac arrest or suffering from another serious heart problem. Trauma can lead to symptoms of post-traumatic stress, such as periods of intense anxiety triggered by reminders of the event, intrusive memories or flashbacks, reflections on negative thoughts and moods, feelings of always be on guard or trouble sleeping.
“We want to make sure families understand that if they’re going through some of this, they’re not alone,” said study lead author Lauren Schneider, PsyD, clinical psychologist at Betty Irene Moore Children’s Heart Center. from Stanford Medicine Children’s Health. . The study is part of a larger effort to discern the ripple effects that serious pediatric medical conditions create for families and to help families receive the support they need.
The study’s lead author is Korey Hood, PhD, professor of pediatrics and psychiatry and behavioral sciences at Stanford School of Medicine.
The study found that some children fitted with automatic defibrillators also suffered from PTSD, although it was less common in children than in parents: 12% of children and adolescents surveyed were affected.
Untreated PTSD can be debilitating, but effective treatments do exist, said Schneider, who is also a clinical associate professor of psychiatry and behavioral sciences at Stanford Medicine.
“We want families to understand that there is a treatment,” she said. “They don’t have to suffer.”
Alert with every beep
Kristina Schenone of Rohnert Park, California knows the challenge of caring directly for the hearts of her children. Vincent, 16, and Gabriela, 18, both had automatic defibrillators implanted to help manage a genetic heart condition: Vincent has hypertrophic cardiomyopathy, which enlarges the heart and reduces its ability to pump blood, and Gabriela has even milder heart disease. severe version of the same problem, ventricular non-compaction with arrhythmia.
Vincent’s device was implanted after he suffered cardiac arrest in his school playground in March 2015, when he was 9 years old. Schenone, alerted to the situation while at work, met him at the local hospital. Vincent was then airlifted to Lucile Packard Children’s Hospital at Stanford for surgery to implant the defibrillator. Schenone waited nervously during his operation, then spent several days answering repeated questions from his son about what had happened and what he was doing in the hospital, which heightened his concerns about his health.
Since then, Kristina has experienced symptoms of PTSD. For example, she is hyper-alert to ambulance sirens. The beeps also trigger his anxiety, since defibrillators are designed to beep when there is a malfunction.
“To this day, it’s terrifying,” Schenone said. If an ambulance passes while her son is in school, she immediately sends a text to ask if he is okay. And “Every time I hear a beep on the TV, I ask the kids, ‘Is this your device?'”
She also worries when her children indulge in any form of exertion, as Vincent’s meltdown was triggered by a light jog around his school playground. Simple outings such as beach jaunts can be stressful, as she feels the need to constantly watch her children to make sure they don’t overextend themselves.
Document the difficulties of the parents
Schneider and pediatric cardiac electrophysiologist Anne Dubin, MD, initiated the study after leading parent support groups for parents of patients with implanted cardioverter defibrillators.
“We were struck by the stories parents shared that were so indicative of lingering trauma symptoms,” Schneider said, adding that parents often described living with those symptoms for months or years. “Parents shared how they can be hypervigilant or overprotective, and how much of that comes from fear and helplessness. It was so palpable how many of these parents needed more support.
Every time I hear a beep on the television, I ask the children: “Is this your device?”
Research on adults with heart disease has shown that serious medical events can leave patients with lingering trauma, but similar effects in pediatric cardiology patients and their families have received little attention in research. To conduct the study, the researchers administered questionnaires about the demographic characteristics and symptoms of PTSD to 50 young people aged 8 to 21, all equipped with automatic defibrillators, as well as to 43 of their parents. Pediatric cardiac patients were also screened for anxiety and depression.
Twenty parents (47%) and five children met the cut-off score for PTSD, with another child partially meeting the criteria for PTSD. Patients who received their device after a serious cardiac event were more likely to have PTSD than those whose device was implanted before suffering a cardiac emergency. Additionally, parents with PTSD were more likely to have a child who met criteria for depression.
The reason parents have higher rates of PTSD, Schneider said, may be that they tend to have clearer memories if their child has had a heart emergency, as a child may be unconscious or not remember what happened. Parents also have a more nuanced understanding of the dangers of unstable heart rhythms.
“Children are, in some ways, appropriately protected, but the parent is there for everything: all the discussions, all the risks, possibly witnessing a cardiac event, an ambulance ride, waiting impatiently for the child’s surgery is complete,” said Schneider.
The research findings indicate that pediatric cardiology teams across the country should include mental health professionals who can help determine if parents or children need follow-up care related to medical trauma and can encourage parents to take care of themselves because it will benefit their child, says Schneider. She added that she often reminds families of the air travel adage to “put on your own oxygen mask first.”
Fortunately for the Schenone family, Vincent’s heart condition has been stable since having his automatic defibrillator implanted in 2015. He continues to be monitored by Stanford pediatric cardiologist Kara Motonaga, MD. But long-term concern over Vincent and his sister – who received her device in November 2018 – weighs on their mother, especially when new medical issues arise.
In August 2019, Vincent heard the beep that indicated something was wrong with his defibrillator. The family rushed to Stanford, where Vincent’s doctors discovered that one of the wires connecting the device to his heart had come loose, possibly from a struggle with his dog, or perhaps because it had outgrown the original device. He had his first defibrillator, suitable for a child, replaced by a device better suited for a larger teenager.
To cope with the stress, Schenone attended therapy and developed an arsenal of strategies, including writing in a journal, performing deep breathing exercises and taking walks. She has a close relationship with her two children and is learning to believe that they develop good judgment about their heart problems as they gradually take responsibility for their own health.
Schenone’s profession as a florist also helps, she said. Listening to music while she designs floral arrangements – especially for joyful events such as weddings – brings her a sense of peace and respite.
“It’s so nice to make other people feel good,” Schenone said.
Stanford researchers hope their findings will help children and adults living with PTSD feel better. At the Heart Center, Schneider provides mental health care to children with various heart conditions, including those awaiting or recovering from heart transplants.
“For pediatric patients, we can conduct in-person consultations, conduct formal assessments, and provide treatment and therapy, not only for PTSD, but also for other mental health issues related to overall coping and adjusting to their illness,” she said.
As a pediatrician, Schneider doesn’t treat parents, but she can help identify when parents would benefit from mental health care, provide them with information about what treatment would look like, and connect them to resources.
Schneider’s team is also launching a new study to see if a group therapy intervention that teaches parents coping strategies and cognitive-behavioral techniques is helpful in reducing symptoms of trauma.
The team hopes the support groups will help parents feel less alone and allow them to develop a compassionate view of their experiences. “Parents can sometimes feel guilty for struggling; there may be a perception that they just need to be grateful to have their child,” Schneider said.
“We want parents to know that their emotional reactions are worth monitoring, to validate and normalize this process, and that getting the right care can improve their mental health,” she added.
In addition to the Stanford team, researchers from Valley Children’s Healthcare in Madera, Calif., and the University of North Carolina in Greenville contributed to the research.
The research was funded by a donation from an anonymous donor.