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Parents of children with cancer suffer post-traumatic stress symptoms, both immediate and lingering

December 14, 2005

Illness takes a psychological toll on patient's family

Parents of children with cancer commonly suffer symptoms of post-traumatic stress, both during treatment and years after their children survive the disease, say researchers at The Children's Hospital of Philadelphia. The researchers recommend that hospital staff members routinely screen parents for such stress symptoms during a child's treatment, and offer appropriate psychosocial treatments.

"We have found, time and again, that we need to approach and treat these types of traumatic stress from a family perspective," said study leader Anne E. Kazak, Ph.D., ABPP, director of Psychology and co-director of the Center for Pediatric Traumatic Stress at Children's Hospital. "Our understanding of these traumatic stress responses should build on existing strengths in families, while being sensitive to parents at higher risk for stress symptoms that may interfere with their daily functioning."

The Children's Hospital researchers recently published two studies of posttraumatic stress (PTS) symptoms in mothers and fathers of children with cancer. One, in the Oct. 20 issue of the Journal of Clinical Oncology, focuses on parents' symptoms while their children's cancer treatments are going on. The study team found that among 119 mothers and 52 fathers, all but one parent had some PTS symptoms.

The second study, in the November issue of the Journal of Family Psychology, describes patterns of those stress symptoms in 98 couples who were parents of an adolescent survivor of childhood cancer. The adolescents had completed treatment an average of five years before the study. Although parents' PTS symptoms were less common than those found in parents during the period of their children's treatment, in a majority of families studied, at least one of the parents had moderate to severe PTS.

"We hope these findings will help mothers and fathers to understand it's normal to have stress symptoms in reaction to their children's cancer," said psychologist Melissa A. Alderfer, Ph.D., a corresponding author of the second study. "Parents need to take care of themselves, so they can be more helpful to their children."

In an editorial accompanying the Journal of Clinical Oncology study, Sharon Manne of the Fox Chase Cancer Center in Philadelphia, refers to parents of children with cancer as the "invisible patients." Even when cancer treatment achieves a cure, she says, "fear of recurrence is a universal, never-ending worry for parents." She notes that traditional measures of psychological distress, which focus on anxiety and depression, "do not capture the full picture," and calls for broadening evaluations of the parents to include assessing traumatic stress responses.

Broad Range of Events May Leave Psychological Trauma

PTS symptoms include intrusive, unwanted thoughts; avoidance of stress-inducing settings and situations; and heightened arousal, such as sweating, dizziness or increased heart rate triggered by reminders of the original experience. Although PTS symptoms are not as severe as full-blown post-traumatic stress disorder (PTSD), they are closely related. In a previous study, the Children's Hospital team found that 20 percent of families of adolescent survivors of childhood cancer had at least one parent with current PTSD.

Stressful events such as learning the child's cancer diagnosis, seeing the child in pain, emergency hospitalizations, adverse effects of treatment, and deaths of other patients, may all contribute to a parent's PTS symptoms.

Psychologists originally characterized PTSD among patients suffering the aftereffects of war or natural disasters. "Because cancer is a life-threatening experience," said Dr. Kazak, "it too can inflict similar psychological effects."

Another recent study by Dr. Kazak and colleagues, published online in the Journal of Pediatric Psychology, presents a more general model of pediatric traumatic stress that includes traumatic injuries, burns, organ transplantation and chronic medical conditions, in addition to cancer, as experiences that may cause traumatic psychological symptoms. "Potentially traumatic medical events are frequent occurrences for children. Each year one in four children receives medical care for an injury[while] other conditions, such as burns, sickle cell disease, diabetes, and severe asthma, affect large groups of children," the authors write.

Stress May Take Different Forms Among Parents

The researchers found that during a child's cancer treatment, parents were not more likely to have higher stress levels if the child had a more intense treatment. "Other studies have found that a family's subjective experience of a medical event plays a larger role in shaping psychological outcomes than more objective factors such as the intensity of a child's treatment," said Dr. Alderfer. "If we can identify at-risk families early on, we may be able to provide more effective, brief treatments to the parents."

Recognizing patterns of PTS symptoms among parents of childhood cancer survivors, said Dr. Alderfer, may also guide healthcare providers in better assisting families to cope with stress. Unlike some studies of parental stress, in which fathers are underrepresented, this study analyzed fathers of patients as well as mothers.

The researchers identified five patterns among the 98 participating couples: sometimes mothers had stronger symptoms, sometimes fathers, sometimes neither or both. Another pattern was for a couple to be more emotionally disengaged - not showing frequent avoidance and arousal symptoms, but having trouble concentrating and making decisions. "Stress symptoms play out in different ways from family to family, and the most effective approach to helping parents is to understand and address their individual needs," said Dr. Alderfer.

One treatment used by Dr. Kazak and her team at Children's Hospital is the Surviving Cancer Competently Intervention Program, using a family group treatment model that has achieved effective results in a one-day, four-session program. "As we continue to understand how families adjust to a child's traumatic illness, we hope our work contributes to the recognition of parents' experiences within the overall context of caring for children with cancer," added Dr. Kazak.

Children's Hospital of Philadelphia