For patients and their parents,
staying in touch with family and friends during an inpatient stay
helps the days go by more quickly and lightens the burden of illness.
With four new projects, Children's Hospital Boston helps patients
and families stay in touch.
TLC in the modern age
For parents, having a child in the hospital is hard enough, but having
no one to share your worries or frustrations, joys or triumphs with
makes it even harder.
That's why a new program that easily allows patient families to
create their own Web sites is such a hit. Using a program called
TLContact, parents can design a personalized "CarePage"
in six easy steps where they can post news and photographs of their
hospitalized child for friends and family. The sites also let well-wishers
post notes of encouragement on an interactive message board.
Child Life Specialist Beth Donegan-Driscoll has seen how the CarePages
transform a family's stay at the hospital. "The Web sites quickly
become vital because families can provide regular updates to all
the people who are interested without having to spend all day or
night on the phone."
For Brian and Michelle Gagne, who are from Vermont, the site they
created for their daughter Angelina was indispensable. "It's
been an incredible blessing to us," says Michelle. "It
gives us somewhere to go in the middle of the night when we need
to know there's someone out there for us." -MC
To learn more about CarePages or to see a sample, visit www.childrenshospital.org/tlc
A journal that writes back
When Bill and Diane Pickles found out nine years ago that their
unborn son had hypoplastic left heart syndrome (HLHS), they didn't
know where to turn for support. They had never heard of the disease,
which involves several abnormalities of the heart and great blood
vessels, and felt they were the only family dealing with the problem.
It was feeling alone, at a time when they would have welcomed
the chance to talk to other families dealing with HLHS, that inspired
them to be videotaped talking about their ordeal for an online
community called Experience Journal.
Developed by David
DeMaso, MD, associate Psychiatrist-in-Chief, and
Joseph Gonzalez-Heydrich, MD, chief of Psychopharmacology,
the Experience Journal is a forum for families facing pediatric
heart disease or depression to share their experiences.
"Parents talk to each other all the time in the hospital,"
says DeMaso. "They don't just share facts about their child's
condition—they also provide support and help to each other. We
wondered whether computers could facilitate that interaction."
The doctors' interest in developing an online community was bolstered
when they found that nearly every family they talked to wanted
to discuss their experiences, but only half had actually done
so. The barrier, they found, was the time and travel involved
in actually meeting with other families.
Experience Journal solves those problems in several ways. Users
can read stories written by patients, families, doctors, nurses,
and friends, and can submit their own feedback or stories. And
in addition to the Pickles family agreeing to share their experiences
dealing with cardiac disease, a family facing depression agreed
to be filmed at home for a series of video diaries.
"Like a lot of parents, we were up for anything that would
help other families," says Bill Pickles. "When we were
going through this with Jake when he was first born, we didn't
have a lot of contact with other people going through this because
it wasn't available to us, but we would have welcomed it."
Since its launch in late 2001, more than 24,000 users have visited
Experience Journal and families have submitted over 200 experiences.
A journal on inflammatory bowel disease may soon join those for
cardiac disease and depression, and a hospital in Japan has expressed
interest in translating the entire cardiac journal into Japanese
for its patients.
"When families have a child with a chronic illness, they
learn a lot," says Gonzalez-Heydrich. "This site lets
them impart their wisdom so everyone feels less alone." -ZB
Weaving a new Web
When the hospital's Stem Cell and Hematopoietic Transplant Unit
was renovated last year, one of the many improvements was the addition
of computers with Internet access to all 13 rooms on the floor.
Since patients who undergo stem cell transplants (SCT) for various
illnesses, including cancer, can spend several weeks on the unit
at a time, the additions were an immediate benefit.
Going through an SCT (also known as a bone marrow transplant) compromises
patients' immune systems and is physically draining, which means
they spend most of their time in their rooms with very little to
do. But the new computers help patients keep up with school work,
play video games, surf the Internet and stay in touch via e-mail.
"The addition of the Internet connection has been awesome
for families," says Anita Trombley, CCLS, Child Life specialist
on the unit. "People can still talk on the phone when someone
is on the Internet and they can send group e-mails with updates
so they don't have to spend all day on the phone."
Families who have stayed on the unit agree. "It's been great
for us," says Cathy Belanger, the mother of a patient, Beth,
who was on the SCT Unit over the winter. "I did my Christmas
shopping and took care of the family's banking online, and my husband
used the connection to stay in touch with work. When you spend six
weeks in the hospital, you get creative with what you do on the
Web." - MC
patients are in the hospital for an extended time they either miss
school entirely or have to try and keep up without the benefit of
being in class. Thanks to a new technology, Children's recently
made it possible for one long-time patient to take part in a high
school class, even though he was receiving treatment in the hospital.
All it took was a Web cam and an Internet connection, and before
long Steven Yankopoulos (left) was arguing a court case with his
Londonderry (New Hampshire) High School Law Studies class.
"Being stuck in the hospital for two to three weeks can seem
insurmountable," says Steven. "I do as much schoolwork
as I can, but it can be very strenuous. The amazing part about the
Web cam was that I could talk to my class and they could talk back
to me through the TV." -MC