The power of Experience
Chats helps kids with scoliosis connect from home
Living with a transplant, the virtual way
When Mary Ann Saunders-Marin's oldest daughter was diagnosed with attention deficit hyperactivity disorder (ADHD), she set out to gain as much knowledge about the condition as she could. Most of what she found were articles chronicling ADHD's symptoms and treatments, but she also found the Experience Journal on the Children's Hospital Boston Web site.
Originally developed by Children's psychiatrists David DeMaso, MD, and Joseph Gonzalez-Heydrich, MD, the Experience Journal is filled with narratives and videos written and recorded by parents and children dealing with chronic illness. It gives them a place to share their experiences and how illness affects their daily lives.
In the case of the Saunders-Marin family, the Experience Journal helped them decide whether medication was the right treatment for their daughter. In one of her entries on the site, Mary Ann wrote, "I think medication is fine, but my husband felt exactly the opposite. Now he totally understands. He can see that along with allowing her to learn, it has allowed her personality back as well."
The Experience Journal started with a contribution from a parent on cardiac illness in 2001. Pages on depression, inflammatory bowel disease, overweight disorders, transplants, asthma and ADHD have been added since, with two more scheduled to launch this year.
The concept sprang from DeMaso's research, which emphasized how important families were in helping children with physical illnesses stay strong and resilient. He found that parents of children with depression often felt isolated because they lacked a safe environment to share their experiences, and that online support was easier because it allowed them to be anonymous. "The Experience Journal was initially set up for parents to talk to one another, with the idea of having a collective wisdom through their experiences," DeMaso says. "It's a storytelling environment where families can learn factual information by listening to or watching others' narratives."
The feedback from the site has been incredibly positive, as the majority of parents have said that being able to share similar experiences with others helps make them feel less alone. "It gives parents the chance to impart the wisdom they've acquired," says Gonzalez-Heydrich, "so other families won't have to learn it the hard way."
Adolescence is hard enough without having to be singled out because of a medical condition—especially a conspicuous one like scoliosis, a congenital bending of the spine that often requires the child to wear a brace to straighten the curve.
So Children's Hospital Boston's Orthopedic Department developed an online support group to help patients with scoliosis connect and support each other. "It's something they can do from the comfort of their homes. They can participate as much or as little as they want," says Muriel Corbett, RN, CPN.
The group gathers online once a month for a chat that is moderated by a physician and nurse, who oversee the dialogue, answer technical questions and encourage participants to talk about their feelings. "It's difficult for teenagers to wear a brace," says Rachel DiFazio, PNP. "It makes them feel alone. The chat is good because it lets them know that they aren't the only ones that have to go through this."
For patients undergoing organ transplantation, the operation is only the beginning. It's followed by a lifetime of medications to prevent organ rejection, hospital visits and, for some, dietary restrictions and extreme efforts to avoid exposure to germs. And for teenaged patients, the process can be especially difficult. "I've been teased at school about being short," says Jimmy Yee, 13, who had a heart transplant as a baby. "These kids don't know what I went through."
But in the virtual world known as Zora, an online city built entirely by post-transplant patients, adolescents aged 11 to 16 can forget that they're "transplant kids"—and vent their feelings. Logging on from home, the kids create their own houses and items to fill them, and choose a cartoon character or "avatar" to represent them as they roam their three-dimensional world.
For many, Zora is just a way to have fun. But its developer, child development specialist Marina Bers, PhD, believes that people learn and develop socially by actively building things together.
Plus it provides them with a new way to connect with other teens in the same situation. "The technology is intriguing to the kids," says Elizabeth Blume, MD, medical director of Children's Cardiac Transplant Program. "We've tried to do support groups, but most kids don't want to sit around and talk to other kids who've had a heart transplant. They see themselves as normal kids."
When Zora began, it was just an open field. Today, it's a busy landscape of houses, notice boards and public places like a restaurant, a zoo and a building offering technical help. Most of the buildings are built by patients, but others were provided by staff. Noticing that some of the girls were engaged in a chat about their transplants, for example, staff suggested they create a place for their stories, and the Transplant House was born. Ultimately, it's hoped that patients from hospitals all over Boston—and perhaps the nation—will move in.
It's clear, though, that Zora users don't want an agenda imposed on them, says Children's psychiatrist Joseph Gonzalez-Heydrich, MD. Several years ago, he helped pilot Zora with dialysis patients. Nurses set up a virtual restaurant, hoping to educate their patients about safe dietary choices. Instead, the kids filled the menu with forbidden foods—they wanted no dialysis-related information intruding in their city.
So this time, while a health museum and a pharmacy are planned, their function will be left to Zora's users. And if the theory is correct, the kids will learn more about life after transplantation on their own—while making friends and having fun with cutting-edge technology.