For instant information and support, people with diabetes sometimes turn to diabetes online communities (DOC), or peer support groups, which exist on virtually every platform (think Twitter, Instagram, blogs, YouTube). Many of these communities were created by people with diabetes and act as safe spaces where anyone affected by the disease can ask for advice, provide information, or simply learn from others’ conversations — without fear of judgment or stigma. People with diabetes experience tangible benefits from being part of a DOC. That includes greater social connectedness, improved or neutral blood sugar measures, and lower levels of diabetes distress (anxiety and stress over management of diabetes, and/or the potential long-term health consequences of diabetes), says Perry M. Gee, PhD, RN, a nurse scientist at Intermountain Healthcare and an adjunct assistant professor in the College of Nursing at the University of Utah. These and other benefits may be part of the reason why these organic communities continue catching on all over the world. “Not only do we see more communities each year, but we see more people participating,” Gee says. Yet now researchers are gathering more and more information on the health benefits of DOCs. In fact, online peer support groups were a hot topic at the 2019 Association of Diabetes Care and Education Specialists (ADCES) conference, thanks in part to a review of 47 DOC studies that researchers published in May 2019 in the Journal of Diabetes Science and Technology. That research was followed by a more recent review of nine DOC reviews and meta-analyses published in April 2020 in The Diabetes Educator. The consensus? DOCs are a worthwhile addition to any diabetes care plan. Specifically, researchers found that being involved in a DOC was associated with improvements in clinical, behavioral, and psychological aspects of health. Here are just a handful of science-backed reasons you should join an online peer support group, according to the latest research. Keep in mind that peer support groups don’t replace medical advice from your doctor. An article published in December 2015 in Current Diabetes Reviews notes that misinformation can be a real concern. That said, the 2019 review in the Journal of Diabetes Science and Technology found misinformation in DOCs was uncommon — ranging between 0 and 9 percent of all posts — and unlikely to cause harm. “It’s very important to keep your healthcare provider informed on what’s happening,” Shockley says. “[Peer support groups] are just a good accessory.”
1. Creates Social Connectedness
“For a lot of people, having diabetes can be isolating,” says the 2019 review’s lead author, Michelle Litchman, PhD, an assistant professor in the College of Nursing at the University of Utah and a family nurse practitioner at the Utah Diabetes and Endocrinology Center. Often, people with diabetes (especially type 2 diabetes) won’t share their diagnosis with others because of the fear of stigma. DOCs can help people with diabetes create a support network that understands the day-to-day nuances of diabetes management on a deeper level. “You don’t feel alone,” Gee notes. What’s more, the aforementioned May 2019 review found that people with diabetes who engaged in DOCs experienced a higher quality of life compared with a general population of people with diabetes. This higher quality of life may result in part from the shared experience, social support, and empowerment people experienced from the social connections they created in DOCs. RELATED: How Diabetes and Anxiety Are Connected
2. May Improve A1C and Glycemic Levels
The same May 2019 review referenced prior notes that DOC use was associated with neutral A1C blood test results in adolescents, which may be a positive sign because these individuals’ A1Cs tend to increase during this life stage. DOC use in adults involved in the study, on the other hand, was associated with improved A1C. A1C specifies your average blood sugar level over the previous two to three months, and it’s commonly used to diagnose diabetes and monitor the effectiveness of diabetes management plans, according to the Mayo Clinic. Though everyone’s goals are different, generally, an A1C of less than 7 percent means better blood sugar control and a lower risk of diabetes-related health complications. What’s more, highly engaged DOC users are more likely to have better glycemic levels than users with lower engagement, according to a study published in the April–June 2019 issue of JMIR Diabetes. The reason for these better results may be that DOCs offer accountability, which motivates users to be more vigilant about their blood sugar and to engage in more self-care activities (more on this next). RELATED: 5 Ways to Lower Your A1C Levels
3. Encourages Better Self-Care Habits
A study published in the July 2018 issue of the Future Science OA found that DOC users are also more likely to perform more self-care activities than non-DOC users. Self-care activities include checking glucose levels, taking insulin, getting regular exercise, and/or eating a healthy diet. DOCs also provide people with a place to crowd-source solutions to common self-care concerns — such as weight loss, the best technology for monitoring blood sugar, and the healthiest foods for people with diabetes — all of which helps set them up for long-term success.
Limitations of the Current Body of Research on the DOC
One major limitation to current research, though, is the lack of diversity among study participants. Although type 2 diabetes makes up the majority of all types of diabetes, DOC users tend to have type 1 diabetes, suggesting that people with type 1 may be more likely to seek DOCs, note the authors of the May 2019 study. In addition, DOC users tend to be non-Hispanic white, whereas American Indians, non-Hispanic blacks, and Hispanics have the highest rates of diabetes in the United States, according to the American Diabetes Association. “We need more diversity, we need more people of color to be part of these communities, we need more older adults and people with type 2 diabetes, and even prediabetes to be part of these communities,” Gee says.
3 Tips for Finding an Online Support Group to Better Manage Diabetes
Convinced you need an online support group yet? Good! Here’s how to find the right one for you.
1. Check With a Certified Diabetes Educator
If you know or work with a certified diabetes educator (CDE), they should be able to provide you with the names of one or two DOCs. You can also ask your healthcare provider, but they may not know the diabetes community as well as a certified diabetes educator, Gee says. Don’t have a CDCES? Find one via the ADCES.
2. Consider Your Preferred Platform
Are you an avid Twitter user? Prefer blogs or forums? Visit YouTube regularly? There are DOCs on practically every platform imaginable. Knowing which platform you’re more likely to use can help narrow your search. RELATED: 4 Ways Diabetes Support Groups Can Change Your Life
3. Use Hashtags
If you rely on social media for information and support, take advantage of hashtags to find DOC options. To start, Shockley recommends searching #dsma (Diabetes Social Media Advocacy), #diabetes, #T1d, and #T2d. Beyond Type 1 and Beyond Type 2 are also great online resources where you can find information specific to your condition. If you’re looking for an online support group session you can put on your calendar, the weekly #dsma Twitter chat takes place every Wednesday at 9 p.m. EDT. Join by searching #dsma on Twitter, or following chat host @diabetessocmed and founder @sweetercherise. You can also find more information on online peer support groups through the ACDES. You’ll want to make sure the DOC you choose is active and has moderators, who can answer questions, manage conflicts, and handle misinformation, Gee says. Check out Diabetes Daily’s article “Top Ten Myths About Peer Programs” that clear up some common misconceptions around joining a diabetes community!
