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Type 1 diabetes parents turn to the Internet for support

For parents, thinking about their child’s disease rarely stops at the clinic. They carry their concerns home with them.

In fact, most parents of children with Type 1 diabetes use Internet forums to gain knowledge of their child’s disease and to find social support among other parents, University of Florida researchers have found. They examined how parents used these forums in a study, which was published online ahead of print in December in the journal Pediatric Diabetes.

UF researcher Amanda Balkhi surveyed 102 parents for the study. Of the 102 parents, 38 percent reported social support as the biggest benefit of the forums. Thirty-one percent cited the knowledge they gained there as the primary reason they used the forums and 22 percent of parents cited a mix of support and knowledge as draws to the forum.

“We don’t know, we can’t know and we’ll never know if these forums are filled with good information or bad information because if we publish this today, come tomorrow, the information in the forums will be different,” said Balkhi, a doctoral candidate in clinical and health psychology in the UF College of Public Health and Health Professions.

But the study’s findings can better establish how much these forums are impacting parents’ care of their children. This is important because of the quality of information parents expect to find in the online forums, said Gary Geffken, Ph.D., chief of medical psychology within the department of psychiatry for UF Health, an associate professor of psychiatry in the UF College of Medicine and co-author of the study.

“There have been studies about the impact of forums on adults with Type 1 diabetes,” Balkhi said. “This is the first study we know of that looks at the impact that diabetes online communities have on parents.”

The online questionnaire assessed parents’ knowledge of Type 1 diabetes, their level of stress, how the parent dealt with his or her child’s diabetes and how much the parent trusted information he or she found on the Internet.“I was at the Starbucks the other day, and there was a particularly long line of people waiting to get coffee. Everybody was on their cell phone — 20 out of 20 people,” Geffken said. “Probably very few were looking at diabetes forums, but the point is that everybody is online, all of the time.”

What the researchers did find was that the forum-users are knowledgeable. The researchers’ questionnaire included the Michigan Research and Training Center’s Diabetes Knowledge Test. The parents’ average score was 89 percent.

This is good: The researchers also found that most parents were using the information they found in the forums to help care for their child.

“The big takeaway from this study is just the sheer amount of parents that trusted the information found in the online forums and used it,” Balkhi said. “Eighty-four percent of parents said, ‘I’m going to take this information and use it to care for my child.’ That’s a pretty big impact.”

The forums’ other impact was social support. In the forums, parents reported making strong friendships — so strong that they rated these online friendships as good or better than their in-real-life friendships.

“For some people, that’s striking because you don’t expect this person you can’t see, touch, feel, to have such a big impact on your life,” Balkhi said.

Next, the researchers hope to turn their eyes home to see how many parents who come to the diabetes clinic at UF are using online forums. Though not yet completed, early results of the study are showing approximately 80 to 82 percent of UF patients’ parents are using online forums. Further down the road, the researchers hope to follow the parents for a longer period of time to see how the information they have found through the forums has affected their child’s health and their own parenting stress levels.

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