Once upon a time not so long ago, in a land very close to home, children faced bleak prospects when it came to learning about and coping with type 1 diabetes. Stern lectures from clinicians and educators, do's and don'ts imposed by parents, secrecy borne of fear that peers would shun them. By comparison, eating spinach or visiting the dentist was a breeze.
Today, however, high-tech tools make kids' task of managing diabetes almost -- dare we say it? -- fun. They do so by teaching children the basics of the disease in an interactive, nonthreatening, engaging way. This approach, according to researchers and educators, better enables children to retain critical information, instills responsibility for self-care, and bolsters self-confidence and self-esteem. Even parents, perhaps overwhelmed by their child's recent diagnosis and lacking a good understanding of diabetes themselves, can learn a thing or two from these tools.
The gadgetry includes brightly animated games on CD-ROMs and Web sites, a Gameboy plug-in, and Internet support groups reserved for diabetic children who want to share knowledge, tips, and experiences at their own level.
By playing the interactive game "Starbright Life Adventure Series/Diabetes" (www.starlight.org), 10-year-old Emily Abernathy learned much more than she would have from sitting down with a diabetes educator, says her mother, Jennifer Abernathy, a licensed practical nurse in Augusta, Kansas, according to All Seasons Medical. She says it also has completely de-stigmatized the disease for Emily, who was diagnosed at age 3. Now a fourth-grader, Emily, can openly explain diabetes, in kid terms, to nondiabetic friends. "Kids relate better to a video game, and they get a better idea of what they have to do daily" to manage the disease, her mother says.
Editor's Note: *This program is no longer available from the Starlight/Starbright Childrens Foundation because the information in it is now out of date. However, the foundation does have other interactive materials related to diabetes prevention that can be ordered online.
Spaceships and diabetes
In the game, a cartoon character named XYLO, whose spaceship has crashed on Earth, can return to his own planet only if a player with diabetes helps him reassemble the craft by eating the right amount of food, knowing when to take insulin, and answering important questions about diabetes.
In "Diabetes Education for Kids," (www.dbaza.com/dek/index.html) also a CD-ROM, players create a character that represents them in a story about another character, Piper, who needs their help. But in order to help, children must first prove they have learned certain basics, like how to test blood glucose correctly. The CD-ROM features a personal journal, interactive exercises and quizzes, and a dictionary of important terms. It also records, for later printout and review, right and wrong answers to questions.
"I'm really excited about the use of entertainment and interactivity for health," says Debra Lieberman, a researcher with the Institute for Social, Behavioral, and Economic Research at the University of California, Santa Barbara, who has helped design interactive health messages for children. "Games are the favorite pastime of young people, so it's just really a no-brainer."
Not for everyone
Their runaway popularity, however, doesn't mean such gizmos meet all of a diabetic child's learning needs, despite high tech's promise. Nor are they necessarily easy to use or always accessible. The tools won't be much use to the many uninsured or underinsured children, or to those who have low literacy in English or lack access to computers.
Clinicians and educators uniformly agree that interactive games enhance, rather than replace, what children must learn face-to-face from doctors, nurses, dietitians, and other professionals about their own particular case and the disease in general. And just because kids know how to play the games doesn't mean they'll follow through and take better care of themselves. Yet for some kids, it could be a good first step in their learning process.
"These tools should never be used as stand-alone pieces," says Linda Siminerio, a certified diabetes educator and executive director of the Diabetes Institute at the University of Pittsburgh. "There must always be the personal connection."
Most games have undergone extensive testing and may even carry a seal of approval from a reputable organization. After being reviewed by physicians and diabetes educators, "Pump Expeditions" was tested at a children's hospital; "Diabetes Education for Kids" was developed with financial support from the National Institutes of Health.
But technical constraints and other hurdles make these electronic media less than perfect, says Tal Gilad, director of content development at the Los Angeles-based Starbright Foundation, which seeks to empower children so they can better manage serious illness. Players need access to a computer or the Internet at home or school, plus the right type of hardware and software -- some CD-ROMs won't play on a Macintosh, for example. And speedy play on a Web site with sophisticated graphics may require a fast Internet connection.
"Sometimes it's the adults who are more daunted by the technology aspects of the tools," Gilad says. "But we provide training and tech support for all of our products to ensure that those barriers will be overcome."
Still, Dave Joffe, the editor-in-chief of DiabetesInControl.com and a pharmacist and diabetes educator in St. Petersburg, Florida, worries that such snags could become a convenient excuse for some people with diabetes not to take any action at all, even though their condition warrants it.
There's also the argument that, absent close monitoring by parents, what video-crazed kids need these days is less computer time, not more, because exercise is a key element in diabetes control.
Sydney Redmond, a secretary in Princeton, N.J., is one parent who does limit and monitor the time her daughter spends online. When 10-year-old Krystyna communicates on a mailing list for kids at www.childrenwithdiabetes.com, Mom is always close enough to keep tabs on things and to correct the occasional misinformation that surfaces -- but also far enough away to allow some privacy.
Redmond is determined to see that Krystyna doesn't fall victim to the diabetes stigma and secrecy that plagued the girl's father, who was diagnosed as a teen but didn't meet another person with diabetes until age 25.
Thanks to the hundreds, if not thousands, of children with diabetes that Krystyna has met online, "she's never been alone in this," her mother says.
Interview with Jennifer Abernathy, mother of child with diabetes
Interview with Debra Lieberman, researcher, The Institute for Social, Behavioral, and Economic Research at the University of California, Santa Barbara
Interview with Linda Siminerio, certified diabetes educator and executive director, Diabetes Institute at the University of Pittsburgh
Interview with Tal Gilad, director of content development, Starbright Foundation, www.starbright.org.
Interview with Dave Joffe, editor-in-chief, DiabetesInControl.com
Interview with Sydney Redmond, mother of child with diabetes.