The author with her real-world charges Photo: Essdras Auarez for the Boston Globe

Zora the Explorer

The last 12 months on the Zora research project at Boston Children’s Hospital have been full of breakthroughs. Zora is an online world that lets children create a virtual city and interact with each other. Currently we are doing a pilot project with children who have undergone organ transplants. It’s one of the many projects of the Developmental Technologies team, the interdisciplinary research group I created when I joined the Tufts faculty in 2001. DevTech’s goals are to design, implement, and study computer-based programs for helping children and their caregivers, and in Zora, which we have been running with post-transplant children since September 2006, we have the clearest evidence yet that those goals are attainable.

Zora allows young patients to learn about transplant issues in ways that are meaningful to them. The virtual health museum is a good example: instead of bombarding kids with information, we guide them through research on specific topics and help them build exhibits that communicate what they’ve learned. And in biweekly online meetings coordinated by Keiko Satoh, one of my doctoral students, children address concerns such as returning to school after long hospitalizations. Zora citizens also share their experiences through a newsletter they produce called Transplant Times, distributed to families and physicians.

As young transplant patients engage in activities like these, the isolation that often plagues them vanishes. They know they are not alone. Take Melanie, a 14-year-old who received her kidney from her mother when she was a baby. One day when she was navigating the virtual city, she met Jamie, a 16-year-old girl who received her kidney transplant five years ago. The teenagers decided to get together weekly on Zora, and their lively online conversations have covered everything from boys to what makes the two of them different from their classmates.

Seth, who recently received his second heart transplant, is another kid who has learned about the value of community from Zora. When he entered the hospital for the second transplant operation, word spread online and children made virtual get-well cards for him. Then, a couple of months later, the alarm went out that another kid, Paul, had had some complications with his transplant. Seth visited Paul in the hospital and gave him one of his drawings. Paul kept it on his bedside table.

Then there’s 16-year-old Caroline, who received her new liver almost 11 years ago. Zora gave her a place to talk over her qualms about leaving home. She fretted that she might forget to take her medicines without her mom around. Michael, from northern Massachusetts, told her that he uses an alarm in his cell phone to remind himself to take his meds. Peter, from Maine, said he uses a colorful stack of cards that he keeps in his room.

But Caroline was still worried. She was one of the oldest in the Zora community and would be going to college soon. She had never met a child with a transplant who had gone to college. So the DevTech team contacted 19-year-old Sam, who had received a heart transplant years ago.

The next week, Sam came online, answering questions from his dorm in Connecticut. Caroline felt relieved, and Sam felt important. He offered to come back to Zora anytime as a mentor.

Encouraged by such incidents, DevTech has started conversations with the Floating Hospital for Children and other pediatric medical centers. We’re eager to extend our project. As more and more hospitals and households connect to the Internet, new possibilities for psychosocial support programs open up for children with a range of medical conditions.

For more information on Marina Bers’ work, visit www.tufts.edu/~mbers01 and www.ase.tufts.edu/devtech.

MARINA UMASCHI BERS, an assistant professor in the Eliot-Pearson Department of Child Development, is author of Blocks to Robots: Learning with Technology in the Early Childhood Classroom (Teachers College Press).