28
Vol. 66, No. 2 2015
Northeast Florida Medicine
Pediatric Oncology
Acute symptoms tend to lessen after the initial shock of
diagnosis andas treatments continue.Throughout the journey,
parents report wanting to remain strong and optimistic for
their child, despite balancing the internal stressors they are
experiencing.
11
Typically, distress patterns decrease in intensity
as the lengthof time since diagnosis increases
8
; however, several
factors appear predictive of both better and poorer parental
adjustment during the journey.
According to the National Cancer Institute’s statement on
Pediatric Supportive Care, parents are more likely to exhibit
better short and long term resilience if they:
11-13
• Are employed
• In a supportive environment with regards to friends,
family, and the medical care team
• Have lower levels of parental stress
• Have a positive view of their children
• Have an optimistic expectation of treatment outcomes
In contrast, poorer adjustment is more likely if the parents:
• Experience feelings of helplessness, uncertainty, and anxiety
• Have limited social support
• Have negative interactions with the healthcare team
• View their child’s quality of life negatively
• Have low expectations for a positive outcome
As children transition from treatment into maintenance
and follow-up, acute levels of stress typically begin to decline.
Although the initial high quantity of support may begin to
wane, it remains important for parents to feel stability in the
quality and availability of support throughout the process.
Studies have shown that approximately one third of fami-
lies will experience long-term stress and that in one in five
families at least one parent meets criteria for post-traumatic
stress disorder.
12
Impact on Siblings
The effect of a cancer diagnosis on a sibling can be mixed.
On one hand, siblings may experience a stronger sense of
closeness as the family works together through diagnosis,
treatment, and survivorship. In contrast, they may also be
at higher risk for increased levels of anxiety, fear of death,
loneliness, and feelings of separation.
14
In large part, these
experiences are affected by the age of the sibling at the time.
Sadly, up to 50 percent of siblings can exhibit signs of
post-traumaticstressdisorderaftertheexperience.
14
Inaddition,
interactionswithfamilymemberscanbenegative,particularlyif
they fear the loss of the affected sibling or feel a sense of lack of
attentionfromothers.Factorslikelytoimpactasiblingnegatively
include younger age of the affected patient, extended duration
of patient treatment, and death of the sibling.
15
Siblings may also participate in the treatment process by
serving as donors for an allogeneic bone marrow transplant.
Although this gives them an opportunity to participate in the
care of their sibling, some studies have shown higher anxiety
and lower self-esteem after the process. In contrast, those
who were unable to serve as donors have been found to be at
greater risk of struggling in academics.
16
Improving Outcomes for
Patients and Their Families
In the face of growing data on the impact of a pediatric
cancer diagnosis on patients and their families, pediatric
cancer centers now routinely integrate ancillary support
services into the overall care program for all patients. Social
workers, psychologists, physical therapists, nutritionists, and
oncology patient educators are commonly present and meet
with families throughout the process.
Also, community based support programs and national
organizations have played important roles to extend support
beyond the clinical setting. Several important programs
exist to help patients and families as they are going through
treatment. These include:
• Camp Boggy Creek – A year-round medical camp
organized for children who have been diagnosed with
cancer.
• American Cancer Society – An organization which
provides literature for parents and family members
on their website and can help link parents to local
support resources.
• Pediatric Brain Tumor Foundation – The world’s larg-
est fundraiser for pediatric brain tumors and provides
informational support to help parents throughout the
journey.
• Leukemia and Lymphoma Society – An organization
that links families facing similar diagnoses and pro-
vides both online and telephone support to families
and patients.
It remains important to continue emotional and psycho-
logical support to patients and families after treatment has
concluded. Improving the transition of both the patient
and their family into survivorship has been a growing
area of research in pediatric oncology. Subsequent formal
guidelines have been created to inform patients, families,
and primary care physicians about late effects of treatment.
The latest versions are available through the Children’s On-
cology Group guidelines at
