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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.
Anne E. Kazak, C. Alexandra Boeving, Melissa A.
Alderfer, Wei-Ting Hwang, and Anne Reilly. Posttraumatic
Stress Symptoms During Treatment in Parents of Children
with Cancer. Journal of Clinical Oncology.
2005: vol. 23, pp. 7405-7410.
Melissa A. Alderfer, Avital Cnaan, Rachel A. Annunziato,
and Anne E. Kazak. Patterns of Posttraumatic
Stress Symptoms in Parents of Childhood Cancer Survivors.
Journal of Family Psychology. 2005: vol. 19,
pp. 430-440. Supported by a grant from the National
Cancer Institute and the Abramson Cancer Center
of the University of Pennsylvania.
Anne E. Kazak, Nancy Kassam-Adams, Stephanie
Schneider, Nataliya Zelikovsky, Melissa A.
Alderfer, and Mary Rourke. An Integrative Model
of Pediatric Medical Traumatic Stress. Journal of
Pediatric Psychology. Published online, Aug.
10, 2005.
About medical traumatic stress programs
at The Children's Hospital of Philadelphia
The Center for Pediatric Traumatic Stress at Children's
Hospital develops and evaluates empirically based
interventions for children who have experienced
traumatic stress due to medical illness or injury,
and for their families. It collaborates with health
care providers nationwide through participation
in the National Child Traumatic Stress Network established
by the U.S. Department of Health and Human Services.
The Children's Hospital of Philadelphia
was founded in 1855 as the nation's first pediatric
hospital. Through its long-standing commitment to
providing exceptional patient care, training new
generations of pediatric healthcare professionals
and pioneering major research initiatives, Children's
Hospital has fostered many discoveries that have
benefited children worldwide. Its pediatric research
program is among the largest in the country, ranking
second in National Institutes of Health funding.
In addition, its unique family-centered care and
public service programs have brought the 430-bed
hospital recognition as a leading advocate for children
and adolescents.
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