Children who receive organ transplants know what it's like to spend long periods of time in the hospital and to have to take medicine to keep their bodies functioning after surgery. They also have something else in common—isolation. This isolation isn't so much physical as it is experiential, since it's unlikely that a child who has received a transplant will have anyone to talk with who knows what it's like to get a new heart, kidney, or other organ.
Marina Bers (right) with her
graduate student researchers.
"These young patients always talked about wanting to connect with each other," says Dr. David DeMaso, psychiatrist-in-chief at Children's Hospital in Boston. "But it was almost impossible because of the distances from which they come and live."
That changed, thanks to Tufts child development Assistant Professor Marina Bers and her graduate student researchers. Last year, as part of a National Science Foundation (NSF) grant, they brought together organ transplant patients from Children's Hospital in Boston with the help of Zora, a web-based environment designed to help young people explore issues of identity and to promote positive development through the use of technology.
The computer program allows participants to design and inhabit a virtual city, communicate via chat rooms, write personal profiles, and design characters. Bers developed Zora while she was a graduate student at the Massachusetts Institute of Technology (MIT), and the program was enhanced with the help of a Tufts University Academic Technology grant in 2001.
"We try to find populations that have a need and see how technology can help solve that need," says Bers. "The patients at Children's Hospital are a good example of what can happen when technology is used this way."
The Children's Hospital project was managed by Tufts graduate students Laura Beals and Clement Chau, both of the child development department, and Keiko Satoh, a math, science, technology, and engineering (MSTE) graduate student. Their work involved facilitating online discussions, creating questionnaires, communicating with parents, developing a curriculum, and analyzing data connected with the project.
"We wanted the curriculum to be fun but at the same time make them (the patients) think about things like their diets and medication," says Satoh.
Participants also created virtual restaurants.
"We thought it would be fun for them to talk about the things they could and couldn't eat."
The researchers have labeled the project a success, based on feedback they received from the hospital staff and the participants themselves.
"On an individual level, the project made an impact because we'd get feedback from doctors and nurses who told us that they saw a difference in their patients" says Chau. "We also know from the participants themselves by the fact that they were returning voluntarily to continue working with Zora. We really don't know yet whether the program will work for a random population."
Through Zora everyone from organ transplant recipients to children
in after-school programs can
Bers and her graduate students may soon find out. With support from the NSF, they recently launched ClubZora, an initiative that provides access to specially designed Zora software to youth at over 100 after school settings involved in the Intel Computer Clubhouse Network in the United States and abroad.
"One of our goals with ClubZora is to help foster community among clubhouses in countries that may not normally have a chance to interact on this level," says Laura Beals, who is coordinating the project. "We also want to give these children the opportunity to learn about each other's cultures in a way that might not be possible without this software."
The Children's Hospital Boston and ClubZora projects are part of the work of the Tufts University Developmental Technologies (DevTech) Research Group. To learn more about DevTech, go to http://ase.tufts.edu/devtech or e-mail Marina Bers at email@example.com.
This article originally appeared in the fall 2007 edition of Alma Matters, the magazine for Tufts Arts, Sciences, and Engineering graduate alumni.
Article written Robert Bochnak, G07
Photos by Jodi Hilton