Internet discussion group provides an inspiring, supportive ‘oasis’ for people with diabetes, Joslin study shows

A study that appears in the November/December 2005 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 (http:// 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.”