Post-Traumatic Stress Disorder in Parents of Children with Cancer
It's also a significant risk for parents of children with cancer, as well as the children themselves.
American Family Children's Hospital pediatric health psychologist Kathryn Hammes, PhD, will address the issue October 9 at a meeting of the Pediatric Hematology-Oncology Advisory Group (PHOAG), a program for families of childhood cancer patients and survivors. The meeting will be held from 6-8pm in the Community Room of the American Family Children's Hospital, 1675 Highland Ave., Madison.
From the shocking initial diagnosis to the traumatic whirlwind of treatments, surgeries and procedures, the pediatric cancer experience is rife with traumas that may put one at risk for developing post-traumatic stress disorder, Hammes says.
In fact, research has shown that families facing childhood cancer are actually more likely to develop post-traumatic stress disorder than are victims of shootings, armed robberies or natural disasters. Among teen cancer survivors in a National Child Traumatic Stress Network study, about 45 percent of their mothers and 35 percent of their fathers experienced moderate to severe symptoms of post-traumatic stress disorder one year or more post-treatment.
"It's not just the child who's at risk – and frequently, their parents are at even more risk," says Hammes, who notes that post-traumatic stress disorder is not exclusive to the childhood cancer experience. Families of children with diabetes and other major illnesses are also vulnerable.
Symptoms of Post-Traumatic Stress Disorder
Three main groups of symptoms set post-traumatic stress disorder apart from depression and other generalized anxiety disorders in parents of children with cancer:
- Re-experiencing events, such as the child's diagnosis, or having flashbacks, nightmares or recurrent thoughts about a painful procedure or other memories of the child's illness and treatment
- Avoidance and emotional numbing – shutting down emotionally and avoiding people, places or conversations associated with their child's cancer
- "Hyperarousal," which can involve difficulty sleeping and concentrating, or irritability
Post-traumatic stress disorder involves significant levels of all three of these hallmarks, Hammes says, but any combination of post-traumatic symptoms may significantly disrupt emotional and behavioral coping.
Several factors may help explain why parents of sick children may in fact be more vulnerable to post-traumatic stress disorder than the children themselves. These include the financial impact of a cancer diagnosis on families and the sheer shock of discovering that your child has a potentially fatal illness.
"It's a surprising event – cancer isn't on a parent's radar to be thinking about when it comes to their young children," Hammes explains. "Oftentimes, it just comes out of the blue. And on top of that, it's life-threatening and it requires complete reorganization of the family's life."
In many families, the financially stable construct of two working parents quickly unravels as one parent quits his or her job to take care of the child. While parents shoulder the financial burden and much of the emotional strain, the sick children themselves are often shielded from these realities as they deal with their own – the next shot, the next surgery, or significant changes in their typical routines.
"The children are so busy being sick, it's often their parents who are really dealing with the emotional impact of all this," Hammes explains. "It really impacts families financially, emotionally and socially – they're coping with repeated and prolonged stressors."
Early Intervention Is Key
In both parents and children, symptoms of post-traumatic stress disorder may begin to occur while the child is still being treated, or symptoms may not surface until much later.
"Oftentimes, parents are so overwhelmed and so focused on the child during treatment that they put their own needs aside," Hammes says.
"I find frequently that it isn't until after the therapy is finished that they really begin to 'fall apart,' as they describe it," Hammes adds. "This is when they've finally allowed themselves to begin to look at everything they've been dealing with – and by then, it could be two or three years down the road."
Regardless of when symptoms surface, Hammes says early intervention is critical.
"The earlier it's treated, the better the outcome," Hammes says. "So it really is something that parents and families need to be aware of."
If a parent, child or sibling is exhibiting symptoms of post-traumatic stress disorder, the first step is to talk to a professional about it – whether it's someone on the child's care team or a primary care doctor. The next step may be an assessment from a qualified professional, such as a psychologist or psychiatrist experienced in dealing with post-traumatic stress disorder.
At American Family Children's Hospital, the pediatric hematology-oncology team has several mechanisms in place to address post-traumatic stress issues throughout the child's care, as well as after the child is treated. These include the Pediatric Hematology-Oncology Advisory Group (PHOAG), as well as Caring For Life, a long-term program specifically designed to help survivors of childhood cancer, as well as their families.
Treatment for Post-Traumatic Stress
Once the problem is identified, treatment for post-traumatic stress disorder often begins with relaxation – learning skills to help gain physiological control of one's body when symptoms surface. This may include visualization, progressive muscle relaxation, deep breathing, yoga and meditation.
"There are many different methods, but the idea is that you have to get your body in control," Hammes says. "When you have post-traumatic stress disorder, you're always on alert – you're always ready for that fight-or-flight response. And so it's critical to teach your body to relax and respond in a different way."
A second component of treatment often involves "exposure therapy," which aims to help reduce anxiety associated with stressful events. Hammes uses the example of a person who gets bitten by a dog, and then avoids all dogs, associating them with fear.
"It's human nature to avoid, but unfortunately this avoidance behavior actually increases your anxiety because you never get that corrective experience," Hammes explains. "If you're always avoiding dogs, you're never going to get an experience that tells you, 'Hey, dogs can be friendly and nice, and that dog that bit me was a unique experience.'"
In the childhood cancer experience, parents may cope with their child's diagnosis in a similar manner – by avoiding it.
"You get this hugely stressful cancer diagnosis for your child, and then you avoid it by avoiding all thoughts and all reminders of it," Hammes says. "If a parent does this, they're likely only going to become more anxious about the whole entire experience for their child, because they're shutting down and not working toward resolution of their anxiety."
So in exposure therapy, post-traumatic stress patients are encouraged to develop their own "trauma narrative" detailing the entire traumatic experience. While incorporating relaxation techniques, the therapist may then ask the patient to listen to a tape recording of his or her trauma narrative.
"The idea is that you're sort of flooding your mind with the information so that you're not avoiding it," Hammes explains. "There's real power in your trauma narrative, in telling your story."
A third element of post-traumatic stress disorder treatment is cognitive behavioral therapy – helping the person look at how they cognitively cope with the traumatic experience.
"How we think about things really causes a lot of our emotions," Hammes says. "It's not the actual event that's critical for developing post-traumatic stress disorder – it's your interpretation of the event. This is why two people can go to war and one comes home with severe post-traumatic stress disorder and the other doesn't."
RSVP to Attend
If you would like to attend the October 9 post-traumatic stress disorder presentation for parents of children with cancer, please RSVP to Sandy Bakk, American Family Children's Hospital patient/family advocate, at (608) 890-8312 or email@example.com.
The presentation will be held in the Community Room of the American Family Children's Hospital, 1675 Highland Ave., Madison. The Community Room is located on the first floor, in room 1335. Parking is free in the children’s hospital parking garage. View Map and Driving Directions
If you or your child exhibits symptoms of post-traumatic stress disorder, talk about your symptoms with a member of your child's care team or your primary care physician. To learn more about American Family Children's Hospital's Pediatric Hematology-Oncology Advisory Group (PHOAG), please contact Sandy Bakk at (608) 890-8312 or firstname.lastname@example.org.
Date Published: 11/08/2007