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 The toolkit, "A Guide to Gutsy Living," is the first resource
specifically for - and by - young people who have undergone
temporary or permanent ostomy surgery, usually to treat inflammatory
bowel disease (IBD), and now have a surgically created opening, or
ostomy, that allows stool to empty into a bag adhered to the
individual's abdomen.
Living with an ostomy is a daunting prospect for adults, let alone
children and adolescents. "You don't know what it's going to look
like, what it's going to mean to your life," said Jennie G. David, a
PhD student in clinical psychology at Drexel University in
Philadelphia, who led the project.
David was diagnosed with IBD at age 12, and underwent ostomy surgery
at 19. David and her colleagues' report describing the guide and how
it was created was published in the journal Pediatrics.
As is typical with pediatric ostomy patients, after undergoing
surgery to remove her colon and before being discharged from the
hospital, a stoma nurse instructed David on how to care for her
ostomy, she told Reuters Health in a telephone interview.
"The stoma nurse was wonderful, but all of her education was geared
toward, 'how do you put on the bag, how do you take off the bag,'"
Davis said. "Not really 'how do I live with this, how do I go to
school with this.'"
David served as co-chair of the Patient Advisory Council (PAC) of
the ImproveCareNow (ICN) Network, a quality-improvement
collaborative of more than 100 centers in the U.S., Europe and
Middle East caring for children and adolescents with IBD.
Through the PAC, David and her colleague and friend Alexander
Jofriet, who was diagnosed with IBD at age 9 and underwent the
surgery at 15, "got good information," David said. "And we had
positive role models, but it could very easily have been no role
models or negative role models." Jofriet is now a clinical data
coordinator at Children’s Healthcare of Atlanta.
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At an ICN Network meeting, David was asked to choose a song that
represented her journey with IBD and play it at the close of the
meeting. She chose Taylor Swift's "We are never ever getting back
together," dubbing it "An Ode to my Colon." Afterward, several
clinicians asked her if she and other PAC members would be willing
to talk to their patients who were facing ostomy surgery.
She and Jofriet began mentoring ostomy patients but quickly realized
they couldn't keep up with the demand on their own. They developed
the tool kit to address this care need.
Information about ostomies on the web is largely focused on adults,
and David and her team of patients and parents were unable to find
educational materials that were "developmentally sensitive," with
images and topics relevant to young patients, such as those heading
to college.
They developed a series of questions and topics to address concerns
that patients might have before the surgery, immediately afterward
and over the long-term, and targeted the guide for ages 10 to 17.
Topics in the final 19-page document include friends, school,
travel, ostomy supplies, clothing, using emergency kits, playing
sports and using humor to help in coping.
Essentially, David said, the goal of the resource is two-fold:
firstly, to serve as models to pediatric patients living with
ostomies that "I can go to work, and I can go to school, and I can
be a normal person with a bag," and secondly, to demonstrate how
patients and parents are motivated and capable of contributing to
clinical care.
The guide can be downloaded as a PDF file from the ICN Network's
website (https://bit.ly/2EnkIBX).
SOURCE: https://bit.ly/2uNuOwG Pediatrics, online Monday April 2,
2018.
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