Managing one’s diabetes involves a lot of responsibility and a lot of work. There are many, many daily decisions to make, and each choice needs to be evaluated afterward to determine how well it worked and why it did or did not lead to the results you had hoped for. In addition to the challenge of carrying out daily tasks, many people with diabetes live with worries and fears about their future health and well-being or with some of the complications of diabetes. Having to face these burdens without the sustained support of others can make living as healthily as possible with diabetes difficult or even impossible.
It makes sense intuitively that having the social support you need can help you manage your diabetes, and scientific research bears this out. It is also clear that while formal diabetes education helps people learn to make changes to improve their health, these changes begin to fade in about six months without additional and ongoing support. There is even some evidence that people with diabetes who reach out to others live longer than those who do not.
Some people are able to get much of the social support they want and need from their family and friends. But unless the people around you also have diabetes, they cannot fully understand what it really means to have diabetes. They can offer empathy and support, but their experience of diabetes is different from yours. As a result, many people with diabetes report that they feel isolated, judged, and overwhelmed, even when they have a loving family and a network of supportive friends.
When facing a tough situation, it’s common to seek out someone who has faced or is facing a similar situation. It helps to talk with someone who can relate to your feelings and worries and can tell you what has worked for him in a similar circumstance. People with diabetes have long gotten support from others with diabetes through support groups in a variety of formats. But in recent years, there has been an effort to create more formal peer support programs so that people with diabetes can more easily get the help that they need from their peers.
What is a peer?
A peer is defined as “someone of equal standing.” In the context of a diabetes support program, this means a person who has diabetes or is affected by diabetes (for example, is the parent of a child with diabetes), and thus has firsthand knowledge of the daily struggles and issues this presents. Other characteristics that may be important when seeking peer support for diabetes include type of diabetes, age, cultural background, ethnicity, gender, and type of diabetes treatment used. The most important thing for the peers, however, is to be able to relate honestly and comfortably with each other about their shared experiences.
While it is possible to create peer support on your own or online, there are a growing number of formal peer-based programs in many communities. Some of these programs match individuals, while others are groups facilitated by a person with diabetes who has been trained to provide the program. Your diabetes educator or health-care provider may be able to tell you what is available in your area.
What can a peer do?
Peers can provide support, mentoring, and education and can lead self-management support groups. Research shows that people who participate in peer programs generally receive informational support through sharing experiences and seeing how others manage diabetes; emotional support, which provides encouragement and a decreased sense of isolation; and mutual support through giving and receiving help.
Peer-to-peer support (P2P) generally refers to two people working to support each other in the management of diabetes. In formal programs, both peers are trained in how to be a good listener, communicate in a nonjudgmental and supportive way, and avoid giving advice, as well as in strategies for making changes in behavior. Each person in this type of relationship can both give and receive help.
Peer mentoring generally refers to two people working together who both have diabetes, but one is designated the mentor, or role model. A person may be designated a mentor for several reasons: That person may have had diabetes longer, successfully implemented a therapy such as insulin, or been able to lose weight or bring his A1C and other measures into the target range. The mentor offers ideas and suggestions to his peer based on his own experiences and what worked for him. There are also programs that identify mentors, or “champions,” who give inspirational talks to individuals or groups of people with diabetes. Some people like the idea of working with a mentor, while others prefer to be on a more equal level, where they can offer support as well as receive help.
Peer education generally refers to diabetes education provided by a person other than a health-care professional. Peer educators often work with a health professional who is a diabetes educator or through a health-care clinic. They generally receive training in the care of diabetes and in how to be an effective teacher.
Some peer educators are community health workers, or promotores, who may or may not have diabetes. However, they are considered peers because they have close ties with the community; they may speak the language, for example, or be from the same cultural or ethnic group. They often serve as a guide for information and for making lifestyle changes, and they bridge the cultural gap between the person with diabetes and his health-care providers. Community health workers are also generally very knowledgeable about local resources and services. Most community health workers receive on-the-job training that targets the objectives of the program they’re working for. Some institutes of higher education have also started offering formalized community health worker education programs that offer credit, a certificate, or a degree.
Peer-led self-management support groups generally refer to formal group programs designed to help people learn the skills needed to make lifestyle and other behavioral changes and to also provide the support needed to better cope with diabetes. These are different from the usual support group in that the peer leaders have been trained to facilitate groups, teach behavioral strategies, and provide support. There are peer-led self-management support programs available for people with any chronic disease, including diabetes, and programs that are specifically for people with diabetes.
All of these types of formal programs have been studied and shown to be effective in helping people better manage their diabetes. The types of improvements that have been reported include such outcomes such as lower A1C, improved quality of life, increased health behaviors such as eating healthfully and taking medicines, and even decreased hospitalizations. Some of the other benefits are increased confidence in ability to manage diabetes (called self-efficacy), social support, positive mood, and understanding of diabetes self-management. Because each of these types of programs is different, you are the best judge of what type might be most helpful for you.
Finding a peer support program
Although peer programs are gaining in popularity, they are not yet everywhere. So the first step is to find out what is available in your area. Your local hospital education program, health department, or diabetes organization is often a good place to begin.
The second step is to decide if you want educational support or support for changing your behavior and coping with diabetes, or a program that has both. You also need to decide if you want to work as an equal partner, be a mentor, or have a mentor. Some programs provide options for all of these, but it helps to know what you need and want. Here is a sampling of some available programs.
If you want to learn how to become a peer mentor or group self-management support leader, your diabetes educator can help you find out how to get the training for that as well. Some programs have several months of training, while others are much shorter.
If you find a peer support program in your area that you think might be helpful for you, here are several questions you can ask to help you decide if this is the right group for you:
- What is the main purpose of the group (education, support, or socializing)?
- Is the group for people with all types of diabetes?
- Who leads the group, and what kind of training does that person have?
- Are there ground rules about keeping what is said in confidence?
- Are family members invited to attend?
- How often are meetings held?
- What is expected of the group participants?
If there is nothing in your area, you might consider seeking support online. While there are many people who receive informal support online through blogs or message boards, there are more formal online programs as well. Some of these are monitored by experts in diabetes, while others are managed purely by people with diabetes. Some online programs are based on in-person programs that have been adapted. For example, the Stanford Chronic Disease Self-Management Program is available online and in-person in some communities.
If there are no peer programs in your area but you believe that one would be helpful for you, you may want to start one. If you attend diabetes education classes, talk with others in the group to determine their level of interest in continuing to get together. You can also talk with your health-care team and ask if they know of others with diabetes who would be interested in taking part in this type of program. They may also be able to refer you to a training program. Remember that these programs take time to create and for the group to gain momentum, so you will need to be patient.
If you are not able to find a peer program and starting one is not appealing to you, you may want to identify someone with whom you can be a partner. As you attend diabetes education classes, a support group, or community events related to diabetes, look for someone you can relate to and ask that person if he would like to talk more about diabetes, either in person or by phone. This can start informally, by just getting to know each other, and then become more formalized. Another idea is to let your health-care team know that you are willing to be a partner or mentor to someone else who has diabetes. If you attend a group education or support program, ask the leader to bring up the idea of creating a peer partnership network or ask others in the group if they would like to talk about diabetes outside of the group.
As much as your family and friends want to help and do help, talking with someone who is on a similar journey can be a very positive experience for many people. By taking the initiative to look for peer support or to create a program in your community, you not only can ease the burden of diabetes in your own life, but you can also help to lighten the load of a fellow traveler.