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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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