Joslin Study Shows Benefits of Online Discussion Boards

Although having diabetes can sometimes feel isolating to individuals, participation in an Internet-based discussion group offers hope, inspiration and encouragement as well as bolsters people's perceived ability to cope with diabetes, according to a new study from Joslin Diabetes Center. The study, which appears in the November/December issue of The Diabetes Educator, examined the impact of Joslin's online Discussion Boards - forums in which people with diabetes can find information and share thoughts and experiences on specific diabetes issues.

Established in 1998, the free service on Joslin's Web site (www.joslin.org) allows people from around the world to log on and post questions or comments about their diabetes-related concerns. The postings are moderated by a team of Joslin specialists, including physicians, nurse educators, dietitians, psychologists and exercise physiologists, all of whom can offer important perspectives about diabetes care.

"There's a strong therapeutic effect from posting on the board," says the study's lead investigator, John F. Zrebiec, M.S.W, C.D.E., a clinical social worker at Joslin and a lecturer at Harvard Medical School.

"Diabetes can be a lonely disease," he says. While face-to-face support groups can help remedy isolation, for many people coming into a new group can be a "very anxiety-provoking experience," Zrebiec says. "Entering a group via the Internet can feel much less threatening and gives people an opportunity to talk about themselves in a much more anonymous way."

For the study, Zrebiec, who runs several of the discussion boards, tracked more than 330,000 visits to the discussion boards over a period of six years. In 1999 and again in 2004, computer-based customer satisfaction surveys were e-mailed directly to some of the board's registered users.

Nearly 75 percent of respondents to the study's 2004 survey rated participation in the discussion board as having a positive effect on coping with diabetes. As one woman commented, "I have found an oasis where I can be encouraged, inspired and educated by people who sincerely understand my struggles."

What's more, 71 percent of respondents stated participation helped them to feel more hopeful. One user, a representative of many, found the discussion board to be an online lifeline. "Here in Spain, I have no support," she commented. "I honestly don't know what I would do without the support I find here. It really has transformed my life and had a positive influence on the way I cope with diabetes."

Researchers report some 25 million Americans have been involved in traditional support groups for chronic diseases, including diabetes. But the findings from the Joslin study suggest that Internet-based groups are particularly valuable because they allow people from any part of the world to come together at any time. In addition, cyber-neighborhoods may offer people a less threatening venue for discussing particularly sensitive concerns about diabetes. As one user reflected, "I never thought I would be able to control the blood sugars because of the binge eating. I never felt able to share it with anyone. Now, I feel some hope.... It made the difference between feeling like a victim and feeling in control again."