Peer Support Helps With Diabetes Control
The importance of support from someone like you
By the time Debra Franco connected with another parent of a child with diabetes, she was desperate. Her 8-year-old son, Luke Franco Salazar, had been diagnosed with type 1 and began slipping into a depression. “He was the only one in the hospital with diabetes,” she says, remembering how Luke felt like the only kid in the world with the disease. It didn’t help that he was the only one in his school with diabetes.
Luke was so resistant to diabetes care that Franco had to hold him down each time she tested his blood glucose or injected insulin. “All the little [diabetes-management] things that complicated his life were just too much for him,” she says. “His life was different, and he didn’t know how to cope with it.”
But Franco had a hunch that her son could cope, if only he could realize he wasn’t alone. Finally, a friend of a friend put Franco in touch with another parent of a child with diabetes. Franco and her new acquaintance set a meet-up for their children along with two other families of kids with diabetes.
The simple playdate changed Luke. “He was really quiet but watched all the kids check their sugars,” Franco says. “It was that extra little push to see that he isn’t alone, that he can do it,” she says. Now 11, Luke checks his blood glucose and injects insulin himself, counts carbs, and reads labels like a pro.
Her son’s turnaround was so significant that Franco began a support group near her McAllen, Texas, home to help other parents and kids with diabetes connect with one another. She’s a believer in the power of peer support—and she’s not alone.
At its most basic level, peer support is given and received by people with the same chronic health condition. Often, it involves sharing personal stories and encouraging one another in diabetes management.
“If you have a more supportive network around you, you’re more likely to be in control,” says Judith Long, MD, associate professor of medicine at the Philadelphia VA Medical Center at the University of Pennsylvania Perelman School of Medicine. Peer support can be especially helpful if you feel you’re not getting support from your family, she says.
Plenty of people can attest to the difference peer interaction makes, but the benefits are backed by more than anecdotes. Science agrees that peers can help one another cope with a disease. Research has found empathetic support also improves overall mental health and quality of life, reduces depression and anxiety, and boosts problem-solving abilities.
Peer support empowers people with chronic diseases to take steps toward improving their own health. “People are influenced by their peers to take on the behaviors they should,” says Edwin Fisher, PhD, global director for Peers for Progress, an American Academy of Family Physicians Foundation program focused on peer support. “If my doctor tells me I’ve got to walk 150 hours per week, that seems like a pretty steep order. But if a friend tells me he walks 150 hours a week, that makes me feel like a schlump like me can do so.”
Much of the research on peer support has involved people with diabetes, and the findings are significant. According to a recent report by the National Peer Support Collaborative Learning Network, of 20 studies on peer support and diabetes published between 2000 and 2012, all but one found social support to be beneficial.
“There can be a certain power in having someone else who shares the same management challenges,” says Michele Heisler, MD, MPA, associate professor of internal medicine at the University of Michigan Medical School and a researcher with the VA Ann Arbor Health Care System.
Many Faces of Support
Support programs take many forms, and one isn’t necessarily better than the others. “We need varied channels and types of interventions so people can find something that works for them,” says Fisher.
Face to Face
Support groups, in their most familiar format, are group meetings. Those hosted by medical centers, doctors’ offices, and community clinics are often led by health care professionals, such as psychologists, social workers, nurses, and diabetes educators, as well as peer educators who have had diabetes training and have a personal connection to the disease.
That said, while health care workers provide topics for discussion and can answer medical questions as needed, they tend to fade into the background as the meeting gets under way. “We want to have our staff prompt the discussion, maybe suggest the topic, then sit back and let the members share their stories,” says Robin Morrisey, RN, manager of diabetes services at Scripps Whittier Diabetes Institute in San Diego.
Not all groups have medical professionals at meetings. This is more often the case with programs independent of medical centers. These groups may be structured or very informal—such as Franco and her son’s first diabetes get-together.
Texas mom Margie Boyd’s group, the Tyler Type One Diabetes Foundation, offers a mix. Monthly meetings for adults usually have a specific focus, such as a guest speaker, presentation from a medical company representative, or Q&A session. Sessions for kids and teens are led by adults who have had type 1 diabetes for years, and are a little less structured. “Kids aren’t going because they want to be educated,” she says. “They go because they want to socialize.”
Most groups have connections to medical professionals who can answer clinical concerns. “If there’s a question I don’t feel comfortable answering and the medical students don’t feel comfortable answering, we’d certainly tell that teenager to talk to their doctor,” says Jim Schuler, a recent University at Buffalo graduate who leads the college’s support group, D-Link. But, he says, most of the teens who frequent his group are more comfortable sharing problems with one another. “It’s much easier to bring up or talk about a certain diabetes-related issue they’re having with someone from our group,” Schuler says.
If a face-to-face peer-support program conducted in a group setting isn’t for you, consider one-on-one interactions. You may find another person with diabetes to meet up with right away or gradually transition a phone or Internet-based relationship to a real-world setting
Over the Phone
There are a number of reasons people may pick phone call or texting support instead of in-person gatherings. Introverts may be less intimidated by a program that provides a measure of anonymity and privacy. And phone support is convenient for the elderly, disabled, and people who can’t find transportation to meetings.
Long also finds phone support useful when peers are hard to come by. For example, a Latino woman who would like to compare notes with another Latina with diabetes may not know of such a person in her area—but a phone program can pair her up with a peer in another state.
“There’s a lot of evidence that phone support can be effective,” says Fisher. Heisler authored a 2010 study published in the Annals of Internal Medicine that matched people with either a nurse manager or peer buddy they could talk to by telephone. After six months, the average A1C in the peer-support group was 1 percentage point lower than among those who received typical care.
For many people, the anonymity of online support beats both face-to-face and phone programs. And, Heisler says, the younger generation naturally gravitates toward online interactions. There are plenty of websites with forums dedicated to people with diabetes. The sites are informal, but give people with diabetes an opportunity to connect with others just like them from all around the world.
In fact, in the past decade or so, a tight-knit community has sprung up online (see “Support at Your Fingertips,” below, for a list of sites). Social media ushered in Facebook support networks and a Twitter-based support group called Diabetes Social Media Advocacy that hosts weekly chats using the hashtag #DSMA.
While online support is readily available around the clock and can be very helpful, it’s important to be cautious about sharing your private information and believing everything you see online. “Especially when you’re dealing with the Internet, you need to have medical oversight,” Heisler says. “Any time there’s a recommendation to change your medication or do something new, check with your doctor.”
For shy people and homebodies, peer support may sound as thrilling as a trip to the dentist, but it’s still important. Part of the fear may have to do with sharing personal stories with strangers. The good news: There’s no participation requirement.
“Not everyone needs to be an active participant to get something out of it,” says Morrisey. Go ahead and join that support group—even if you’ll simply sit and listen to others’ stories.
Searching for Support
Many diabetes centers, community clinics, and doctors’ offices organize support groups. If they don’t, they may be familiar with groups in the area.
To reap the greatest health rewards, you’ll want to find people your age who have the same type of diabetes as you do and who are at the same stage of diabetes control as you are. “The more people feel they can relate to the person, the better,” says Heisler. “Otherwise it feels like, ‘What does this person have in common with me?’ ”
This is especially important for members of minority communities. “It’s really important there’s a cultural connection in some way,” says Long. “There’s a long history of using peer support in the Latino community.”
Of course, people can connect over anything—even if it has nothing to do with diabetes. Long says two men in her ongoing study of peer support bonded over a mutual love of sweet potato pie.
Comfort is key, no matter the manner in which you receive—and give—support. “Do you feel like the people in the group are supporting each other in responsible approaches to taking care of diabetes?” Fisher asks. “I’d think you’d want to join a group that encourages people to get good health care.”
Student as Teacher
Peer support isn’t just for the newly diagnosed or those whose diabetes is not controlled. Even people with long-standing diabetes who are in control can benefit from a solid support network. But for them, the means of support may change, such as from group meetings to informal get-togethers with friends who have diabetes.
Some people move from receiving support to being a peer mentor, such as Schuler, who was diagnosed with type 1 diabetes when he was 12. After years of showing up to group meetings, Schuler, 22, now runs the University of Buffalo D-Link support group in tandem with a team of medical students.
Peer mentoring may also improve the health of people such as Schuler. “There’s a lot of data outside of diabetes that shows being a mentor is really great for your health,” Long says. “People get a sense of purpose. If I’m being held up as a paradigm of good health, then I’m going to be taking care of my health.”
What’s more, mentoring can help people make sense of their diagnosis. “They feel like they’re able to give back because they’re passing on knowledge,” Boyd says. “In some way, it helps give them meaning and purpose in this.”
John Donne wrote that no man is an island—a tough sentiment to swallow when you’re the only person you know who has diabetes. But regardless of where you live, there’s someone out there much like you, dealing with the same condition. Connecting with someone like that can make all the difference in your diabetes care. “I’m certainly much happier now that I have a group in place. I feel better about my diabetes,” Schuler says.
He says the risk he took—stepping into that first support meeting—was well worth it. “More likely than not, it will be helpful to go to a meeting,” Schuler says. “There’s nothing to lose by at least trying to reach out to other individuals.”
Support at Your Fingertips
These online diabetes communities offer chats, blogs, live Q&A sessions, and more.