Nearly half of parents with a child who received an implantable device to correct abnormal heart rhythms met criteria for post-traumatic stress disorder, a Stanford Medicine-led study found.
September 15, 2022 - By Erin Digitale
Post-traumatic stress disorder is common among parents of children with some serious heart conditions, according to a recent study led by scientists at Stanford Medicine. The research focused on families whose child or teen received a cardioverter defibrillator, a surgically implanted device that detects dangerously irregular heart rhythms and provides a small shock to correct them.
Nearly half of parents whose children have received such a device met criteria for PTSD, according to the study, which was published in the medical journal Heart Rhythm. Although the study protocol did not include diagnostic interviews with each parent, the number and severity of symptoms that parents reported on study questionnaires were consistent with what is seen in the disorder.
These parents may have witnessed their child in cardiac arrest or suffering from another serious heart problem. The trauma can lead to post-traumatic stress symptoms, such as periods of intense anxiety triggered by reminders of the event, intrusive memories or flashbacks, ruminating on negative thoughts and moods, feeling like they’re always on guard, or having trouble sleeping.
“We want to make sure families understand that if they’re experiencing some of this, they’re not alone,” said lead study author Lauren Schneider, PsyD, a clinical psychologist in the Betty Irene Moore Children’s Heart Center at 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 senior author is Korey Hood, PhD, a professor of pediatrics and of psychiatry and behavioral sciences at the Stanford School of Medicine.
Some children with cardioverter defibrillators also experienced PTSD, the study found, although it was less frequent in kids than in parents: 12% of children and teens surveyed were affected.
Untreated PTSD can be debilitating, but effective treatments 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 treatment,” she said. “They don’t have to suffer.”
Alert to every beep
Kristina Schenone of Rohnert Park, California, knows the challenge of worrying about her children’s hearts firsthand. Both 16-year-old Vincent and 18-year-old Gabriela have had cardioverter defibrillators implanted to help manage a genetic heart condition: Vincent has hypertrophic cardiomyopathy, which enlarges the heart and reduces its capacity to pump blood, and Gabriela has a milder yet serious version of the same problem, ventricular noncompaction with arrythmia.
Vincent’s device was implanted after he experienced a cardiac arrest on his school playground in March 2015, when he was 9. Schenone, alerted to the situation while at work, met him at the local hospital. Vincent was then helicoptered to Lucile Packard Children’s Hospital Stanford for surgery to implant the defibrillator. Schenone waited nervously during his surgery, then spent several days answering repeated questions from her son about what had happened and what he was doing in the hospital, all of which heightened her worries about his health.
Ever since, Kristina has experienced PTSD symptoms. For example, she’s hyper-alert to ambulance sirens. Beeping sounds also trigger her anxiety because the defibrillators are designed to beep if they are malfunctioning.
“To this day, it’s terrifying,” Schenone said. If an ambulance goes by while her son is at school, she immediately texts to ask if he’s OK. And, “Anytime I hear a beep on TV, I’m asking the kids, ‘Is that your device?’”
She also worries when her kids engage in any form of exertion because Vincent’s collapse was triggered by a light jog around his school playground. Simple outings such as jaunts to the beach can be stressful because she feels the need to constantly check on her kids to make sure they don’t overextend themselves.
Documenting parents’ struggles
Schneider and pediatric cardiac electrophysiologist Anne Dubin, MD, launched the study after leading parent support groups for parents of patients with implanted cardioverter defibrillators.
“We were struck by the stories that parents were sharing that were so indicative of lingering trauma symptoms,” Schneider said, adding that parents often described living with these symptoms for months or years. “Parents shared how they can be hypervigilant or overprotective, and how a lot of that is coming from feeling scared and helpless. It was so palpable how many of these parents needed more support.”
Research on adults with heart disease had shown that severe medical events can leave patients with lingering trauma, but similar effects among pediatric cardiology patients and their families had received little research attention. To conduct the study, the researchers administered questionnaires about demographic characteristics and PTSD symptoms to 50 young people aged 8 to 21, all of whom had cardioverter defibrillators, as well as to 43 of their parents. Pediatric cardiac patients were also screened for anxiety and depression.
Twenty parents (47%) and five kids met the cutoff score for PTSD, with one more child partially meeting PTSD criteria. Patients who had received their device after a serious cardiac event were more likely to have PTSD than those whose device was implanted before they experienced a cardiac emergency. Also, 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 had a cardiac emergency, as a child may have lost consciousness or fail to 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 present for everything: All the discussions, all the risk, possibly witnessing a cardiac event, a ride in an ambulance, anxiously waiting for the child’s surgery to be completed,” Schneider said.
The research results indicate that pediatric cardiology teams across the country should include mental health professionals who can help identify whether parents or children need follow-up care related to medical trauma and can encourage parents to care for themselves, as doing so will benefit their child, Schneider said. She added that she often reminds families of the air travel adage to “put your own oxygen mask on first.”
Strategies to cope
Fortunately for the Schenone family, Vincent’s heart condition has been stable since his cardioverter defibrillator was implanted in 2015. He continues to be monitored by Stanford pediatric cardiologist Kara Motonaga, MD. But the long-term worry about Vincent and his sister — who received her device in November 2018 — takes a toll on their mom, especially when new medical concerns arise.
In August 2019, Vincent heard the beeping that indicated something was wrong with his defibrillator. The family rushed to Stanford, where Vincent’s doctors found that one of the leads connecting the device to his heart had detached, perhaps from wrestling with his dog, or possibly because he had outgrown the original device. He had his first defibrillator, suited for a child, replaced with a device that was a better fit for a larger teen.
To cope with the stress, Schenone has participated in therapy and developed an arsenal of strategies, including writing in a journal, conducting deep breathing exercises and taking walks. She has close relationships with both her children, and she is learning to trust that they are developing good judgement about their heart conditions as they gradually take more responsibility for their own health.
Schenone’s profession as a florist also helps, she said. Listening to music while she designs flower arrangements — especially for joyful events such as weddings — brings her a sense of peace and respite.
“It’s such a great feeling to make other people feel good,” Schenone said.
Connections to resources
The Stanford researchers hope their findings will help both kids and adults living with PTSD feel better. At the heart center, Schneider provides mental health care for children with a variety of cardiac conditions, including those awaiting or recovering from heart transplant.
“For pediatric patients, we can do in-person consults, make formal assessments, and provide treatment and therapy, not only for PTSD but also for other mental health concerns related to overall coping and adjustment to their illness,” she said.
As a pediatric practitioner, Schneider does not 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 trauma symptoms.
The team hopes the support groups will help parents feel less alone and enable them to develop a self-compassionate view of their experiences. “Parents can sometimes feel guilty for struggling; there may be a perception that they just need to be grateful they have their child,” said Schneider.
“We want parents to know that their emotional reactions are worthy of follow-up, to validate and normalize that process, and that getting appropriate care can improve their mental health,” she added.
In addition to the Stanford team, researchers from Valley Children’s Healthcare in Madera, California, and North Carolina University in Greenville contributed to the research.
The research was funded by a gift from an anonymous donor.
About Stanford Medicine
Stanford Medicine is an integrated academic health system comprising the Stanford School of Medicine and adult and pediatric health care delivery systems. Together, they harness the full potential of biomedicine through collaborative research, education and clinical care for patients. For more information, please visit med.stanford.edu.