During my fellowship training and early career, I was a pediatric psychologist providing psychiatric liaison to the Pediatric Oncology Unit at the Memorial Sloan-Kettering Cancer Center (New York, NY). The majority of the referrals were for children exhibiting behavioral problems such as severe tantrums, inability to swallow pills or refusal to eat, anxiety during invasive procedures, and other problems with adherence to medical treatment. My work sometimes involved teaching children coping skills or assessing the underlying emotional problem for the behavioral issues. But in the majority of cases, I worked with parents to teach them behavioral methods to handle these problems. As I worked closely with families, I usually followed the patient—and the family—for the entire duration of the child’s treatment, whether it was successful or not.

The most striking issue to me over the years of doing this work was the immense practical problems and emotional stress placed on a parent of a child being treated for cancer. The parent providing primary care to the child, typically the mother, may reside for months in the hospital, leaving behind her remaining children and her spouse (along with her own sources of emotional and practical support) in a distant city. Hospital staff and other parents become surrogate sources for support for the caregiving parent. In addition, the parent who is left behind to care for the remaining children is often faced with managing the home without assistance. Adding to parents’ stress is that many travel from foreign countries for their children’s treatment and do not speak English. Furthermore, caregiving parents are expected to manage their child’s complex medical regimens both inside and outside the hospital. For many parents, what is most upsetting is witnessing the suffering of the child they are responsible for protecting. Parents watch their child undergo extremely invasive procedures such as intubation, and many parents watch their child endure painful mouth sores, indwelling catheterization, temporary or permanent disfigurement or disability caused by surgery; or lengthy, intense chemotherapy, radiation, or stem-cell transplantation. Although treatment advances have increased overall chances of survival to 75%,¹ some parents face their worst fear, deciding when to end salvage treatment and begin palliative care and ultimately endure the unimaginable situation of watching their child die. Even if the child is cured, fear of recurrence is a universal, never-ending worry for all parents.

Given these stressors, it is no surprise that parents of children with cancer may experience significant emotional distress reactions. What is surprising, in contrast, is that the literature suggests that clinically significant anxiety and depressive symptomatology is not ubiquitous. Empirical work assessing psychological responses among parents of children with cancer has focused on typical distress reactions including anxiety and depressive symptoms. Studies have shown that between 15% and 50% of mothers, and a slightly lower proportion of fathers, report moderate to severe levels of depressive symptoms during the 6-month period after diagnosis.^2-5 Most studies suggest that, for the majority of parents, distress levels decline over time and return to preillness levels after successful treatment completion.^4,6

What has become clear to clinicians and researchers is that, although traditional distress measures illuminate some of the psychological responses that parents may experience, traditional measures of psychological distress do not capture the full picture. Over the course of the last 18 years, the conceptualization of qualifying events for post-traumatic disorder has broadened the way that clinicians and researchers view psychological symptoms among parents of children with cancer. Since the publication of Diagnostic and Statistical Manual of Mental Disorders, Revised 3rd Edition in 1987,⁷ a serious threat to one’s child is a qualifying event for post-traumatic stress disorder (PTSD). Thus, although in the past a diagnosis of PTSD was reserved solely for persons victimized by severe events such as war or violent crime, witnessing serious injury or threats to the physical integrity of others has been added to the list of events that can evoke post-traumatic stress responses. This broadening of qualifying events has enabled researchers to document a fuller range of parental responses to the diagnosis and treatment of a child’s cancer. Early studies suggested that between 10%⁸ and 40%⁹ of parents of children surviving cancer treatment reported significant levels of traumatic stress symptoms. Studies formally documenting the diagnosis of PTSD have reported that between 6% and 8% of parents of survivors have ongoing PTSD.^10,11

In this issue of the Journal of Clinical Oncology, Kazak et al¹² report on 119 mothers and 52 fathers from 125 families of children undergoing treatment for a pediatric malignancy. These parents were asked to complete two different instruments to assess traumatic stress symptomatology, and responses to these assessments were compared with data from a sample of parents of childhood cancer survivors. Their results suggested that levels of traumatic stress symptomatology among parents of children undergoing treatment were twice as high as those reported by parents of children who were considered survivors. These differences were particularly striking among mothers: nearly one fourth of mothers reported severe levels of symptoms in the treatment sample, compared with 12% among mothers in the survivor sample. When both parents from one family participated, the figures were even more troubling. Almost 80% of the families in the sample in which two parents participated had at least one parent with severe traumatic stress symptomatology. Even more unexpected was that traumatic stress reactions were not associated with more intense medical regimens. Regimens that included high-dose radiation, treatment for metastatic disease or a brain tumor, or bone marrow transplantation were not accompanied by a greater likelihood of traumatic stress responses.

These findings raise interesting questions regarding the assessment and management of traumatic stress among parents of children in active cancer treatment. As mentioned by Kazak et al,¹² we do not know whether these responses typically resolve on their own over time or if they are predictive of a later diagnosis of PTSD. Future research should address this issue. If early traumatic stress responses are highly predictive of later PTSD or other adjustment problems for parent or child, then parent traumatic stress responses should be assessed and treated immediately rather than waiting until the child completes medical care. Even if the majority of traumatic stress responses resolve over time, Kazak et al suggest a number of steps to improve care for parents. In particular, questions regarding traumatic stress symptoms should be included in assessments of parent emotional status, parents should be told such reactions are commonplace, and parents should be instructed to seek psychosocial care should the symptoms not resolve after treatment or if they begin to interfere with daily functioning. There are few data available to document whether these questions are being asked routinely or if this information is being provided to parents routinely. Indeed, there are few formal data regarding whether psychosocial services are offered or obtained by parents because the identified patient in pediatric oncology is typically the child.

Although we recently reported that about half of mothers of children undergoing bone marrow transplantation reported consulting a religious counselor, professional counselor, or support group in the month before the study,¹⁰ little else has been documented regarding parental use of psychosocial care. Although families of children undergoing bone marrow transplantation are routinely evaluated before transplantation, pediatric oncology centers do not routinely evaluate parents of children undergoing other types of treatment. Such assessments would be particularly important at stressful transitions for families, such as when a recurrence occurs or at the end of life.

My own experience is that parents may be referred to and may use informal psychosocial care when the child is hospitalized, but they rarely use psychosocial care when the child is receiving outpatient care, and do not typically have the time to pursue psychological care in the community during or after cancer treatment is completed. Brief and efficacious treatments have been developed to assist parents in adjusting to their child’s diagnosis and treatment,^13,14 and effective psychological treatments for post-traumatic disorders have been developed.¹⁵ It may be beneficial to adapt and evaluate the efficacy of these interventions for parents reporting traumatic stress. If these interventions prove efficacious, it would be appropriate to offer these evidence-based psychological interventions to parents who report severe traumatic stress reactions during the child’s treatment.

Technological advances in pediatric cancer care have resulted in an impressive increase in the rate of survival for childhood cancer patients. As pointed out by Kazak et al,¹² these medical advances may have unintended consequences for parents. Traditional evaluations of parent distress should be broadened to include assessment of traumatic stress responses, and parents should be screened routinely and offered evidence-based psychosocial care when they experience severe levels of traumatic stress symptomatology. Guidelines for the management of patient distress have been developed by the National Comprehensive Cancer Network,¹⁶ but these guidelines do not include recommendations for the management of caregiver distress. It is hoped that future guidelines will include assessment and management of distress responses reported by our invisible patients in oncology—caregivers.

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The author indicated no potential conflicts of interest.

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