Penn Nursing 090805_final_4c - University of Pennsylvania School ...

the team is running a pilot study in
two CHOP-affiliated pediatric primary
care practices to test the effectiveness of
an autism screening program.
According to Dr. Levy, primary care
physicians are enthusiastic about the
program, particularly since they are
aware of weaknesses in the way they
currently identify children with developmental
disabilities. Research assistants,
with consent from parents, will
assist parents in filling out a standardized
checklist that can signal if a child
has a potential problem and needs further
developmental evaluation.After
about three or four months, the team
will compare their screening process
with the pediatricians’ typical process
to assess impact.
“We’re really doing an implementation
study,” says Dr. Levy.The
approach is practical, designed to report
information on the feasibility of
screening young children in busy pediatric
practices and how much support
parents need in filling out the checklist.
Moreover, the study exemplifies
the strength of the multidisciplinary
approach that the Penn CADDRE
team has taken. Epidemiologists like Dr.
Pinto-Martin and Dr. Mandell designed
the study, but could not have done it
without the input of clinicians like Dr.
Levy and her team, who have years of
experience with children who have
developmental disabilities. In addition,
Dr. Mandell says that before he got
involved in the CADDRE study, he
had no knowledge of autism.“Coming
into contact with Dr. Levy has been
great, because most of my work gives
sort of the 10,000-feet version of what’s
going on with autism.To come in contact
with people like her and Margaret
Souders (a nursing doctoral student
working on the project) has been very
exciting because of their ability to help
me put these things into context.”
When the Brain is
Injured…
Janet A. Deatrick
PhD, FAAN, RN
Associate Professor of Nursing
Medical advances have progressed to
the point where some diseases long
considered fatal have instead become
chronic illnesses and challenges to
manage.Tumors of the brain that were
often fatal are now survivable. Indeed,
survival rates have climbed to an overall
rate of 65%, leading to challenges for
the patient, their families, caregivers,
and the nurses who support the entire
process of recovery and its aftermath.
While children now often survive
these types of tumors, it can come
at a cruel cost to their cognitive and
social development. Often parents,
while grateful that their children have
lived, are soon exhausted by their
ongoing needs.
Associate Professor of Nursing
Janet A. Deatrick, PhD, FAAN, RN, is
leading an innovative interdisciplinary
investigation with colleagues at The
Children’s Hospital of Philadelphia
(CHOP) to identify the characteristics
of those caregivers who feel most overwhelmed
by the challenges facing
them.The hope is that this study will
serve as the foundation for future work
to develop and validate supportive
interventions for this stressed and growing
population of parents.The study,
Family Management and Survivors Of
Childhood Brain Tumors, is funded by
the Oncology Nursing Society and the
American Brain Tumor Association.
“The lifelong demands resulting
from this life-saving surgery and course
of treatment are enormous for the care
of survivors who most likely will not be
able to sustain themselves either financially
or emotionally,” says Dr. Deatrick.
“We must begin the investigation to
determine how best to support those
who now must plan for the support of
these children throughout their own
lives and quite probably beyond.”
Dr. Deatrick’s team at CHOP
includes Wendy Hobbie, MSN, CRNP,
RN, who is an internationally known
expert and author on the psychological
ramifications of surviving cancer; Susan
Ogle, MSN, CRNP, RN, whose
expertise lies in the clinical application
of research knowledge from familyoriented
work; Mary Rourke, PhD, a
pediatric psychologist who works with
families of children with cancer and
who have survived cancer; Michael
Fisher, MD, a pediatric neuro-oncologist
who treats children with brain
tumors; and Jill Ginsberg, MD, a pediatric
oncologist who specializes in the
ongoing care of cancer survivors.
The hope is that this study will
serve as the foundation for
future work to develop and
validate supportive interventions
for this stressed and
growing population of parents.
“The interdisciplinary nature of
this team will help us add to the state
of the science in the support of caregivers
to enhance the quality of life
and effectiveness,” says Dr. Deatrick.
“While we are grateful as a healthcare
community that we are saving the
lives of these children, it is rare that
anyone survives as fully functioning as
before,” says Dr. Deatrick.“We expect
this research will help families cope
with the unknown and thrive in
severely compromised situations.”
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