November/December 2020 Issue
Dynamics of Diabetes: Peer Support in Diabetes Care — Why and How to Refer
By Hope Warshaw, MMSc, RD, CDCES, BC-ADM, FADCES
Vol. 22, No. 9, P. 16
Healthful eating habits, nutritious food choices, medication adjustments, and adherence are topics RDs prioritize when counseling people with diabetes and their caregivers. But do dietitians prioritize and assess peoples’ social support by asking, “Do you know and/or interact with other people with diabetes?” or “Would you like to have opportunities to interact with people with diabetes?”1
Over the last decade, I’ve become a strong advocate for peer support. This article explains why, provides supporting research, offers resources, and shares personal stories about the value of peer support for people with diabetes.
Peer Support Defined
Peers for Progress, an organization dedicated to promoting peer support as a key part of health, health care, and prevention around the world, defines peer support in two ways. One is “Support from a person who has knowledge from their own experiences.” This definition includes four foci: 1) assist with daily disease management; 2) provide social and emotional support; 3) offer links to clinical care and community resources; and 4) provide ongoing support.2 The second definition is “The interaction, education, and support offered by peers with the same condition to promote health-enhancing change.”3 Take note, peer support complements and enhances the ability to live well with a disease; it doesn’t replace other health care services.2
In 2010, as I engaged in social media and networking, I noticed a burgeoning global community of people with diabetes using various platforms to connect and support each other. In time, communities with several goals and audiences formed and grew. People with diabetes launched personal blogs, initiated Twitter chats, created Facebook groups, or simply observed or enthusiastically joined the conversation and learned. Observing these 24/7 connections was heartwarming. Over time, people with diabetes began meeting face-to-face at national diabetes meetings or organizational events. Relationships flourished. Bonds were built.
Since 2011, I’ve presented workshops on peer support with people with diabetes for colleagues, taken leadership roles to build collaboration between the Association of Diabetes Care & Education Specialists (ADCES) and peer support communities (PSC),4 and worked on publications that spotlight emotional well-being and the value of peer support.1,5-7
Growing Emphasis on Emotional Well-Being
Numerous factors have converged to increase awareness of the emotional well-being of people with diabetes. These include increased interactions between people with diabetes and health care providers, greater attention to mental health, more research on diabetes distress, development of assessment tools, and initiation of training programs on diabetes for mental health providers.5,8
Lastly, eye-opening statistics have revealed that people with diabetes spend little time interfacing with their health spend managing this complex disease.9 It has become critical for health care providers to emphasize emotional wellbeing as an essential element of holistic care that includes the ability to complete daily self-care behaviors.
Research Reinforces Peer Support Value
Many publications have demonstrated the value of peer support in diabetes care using several delivery modes. A scoping review and gap analysis of diabetes online communities (referred to here as PSC) analyzed 47 studies.3 Results suggest that use of PSC was highly beneficial and had few downsides. A systematic review of reviews examined the value of in-person and technology-mediated modalities of peer support.6 The analysis suggests a variety of interventions can positively impact clinical outcomes (eg, A1c, blood pressure, cholesterol, weight), behavioral outcomes (eg, diabetes knowledge, physical activity, healthful eating, medication management, self-management, self-efficacy), and psychosocial outcomes (eg, social support, diabetes distress, depression, quality of life). Lastly, an ADCES publication reviewed the research and offered ways for health care practitioners to refer people with diabetes to peer support.1
People With Diabetes Need Straight Talk
A netnographic analysis conducted with people with type 1 diabetes explored how they engage online and why.10 Subjects shared three ways health care practitioners can be more real: 1) demonstrate compassion about the challenges of managing diabetes; 2) share the realities of having diabetes and don’t “sugarcoat” it; and 3) value the importance of belonging to a “tribe” to minimize social isolation. Point three is exactly why health care providers should connect people with diabetes to resources.
Making Referrals and Peer Support Options
The reality is, only a minority of people with diabetes know about and engage in peer support. That means we’ve got work to do. To add this to your workflow, assess your patient’s need for social support. Use the questions cited earlier or others to determine what they think about and where they are regarding peer interaction and support.1 With their responses as a guide, offer one or two personalized peer support options. Maybe it’s a group aimed at children with type 1 diabetes and their caregivers or a group for women and their spouses. The format may be an online group chat, one-on-one in person, or an online meet-up. Find options and communities with an ADCES resource.11
When clients return, ask whether they explored the peer support resources you discussed. If so, ask about their experiences. Doing this reinforces that you believe peer support is an important aspect of their care. Want to initiate a peer support group? Listen to “Virtual Support Groups: Building Community & Online Support for DSMES” with Debra Hull, episode 27 of the ADCES podcast The Huddle, on how she started a now-thriving Facebook support group.12
I’ve been privileged to meet, work with, and interview people engaged in and who are benefitting from peer support. Read why these four people believe finding their tribe has been life-changing.
Living With Latent Autoimmune Diabetes in Adults 18 Years
“I found peer support initially at an insulin pump users group. In one hour of being surrounded by peers, I for the first time felt I had found my tribe. It was a powerful experience, one that changed my life. At the heart of my diabetes advocacy work has been the belief that nobody touched by diabetes should ever feel alone. Connecting with others is a way to feel less alone.”13
Nicole Bereolos, PhD, MPH, CDCES
Living With Type 1 Diabetes 28 Years
“I discovered the [diabetes online communities] five years ago and was immediately amazed at the practical and matter-of-fact topics discussed, even as a CDCES [certified diabetes care and education specialist]: treating adhesive rashes, off-label medication uses, and the pros and cons of different pumps. At times when I was frustrated with my own health, people responded supportively. The unspoken mutual understanding is very powerful.”5
Mila Clarke Buckley
Living With Type 2 Diabetes Four Years
“As someone with type 2 diabetes, using the PSC has helped me find common ground with others dealing with similar challenges. When I pose a question to the community, I never feel judged or blamed. Some of the advice I get helps me become aware of questions to ask my providers.”14
Tamara Oser, MD
Caregiver to Husband (30 years) With Type 1 Diabetes and Daughter (10 years) With Type 1 Diabetes
“There’s no replacement for learning from and being surrounded by other people and families who just ‘get it.’ I have seen this so profoundly in each member of my family. Attending the Children with Diabetes event shortly after Jessica’s diagnosis, talking with other parents, and seeing adults with type 1 diabetes thriving was simply soul cleansing.”15
Remember, showing that you appreciate the demands of diabetes care and acknowledge the need to connect with other people with diabetes demonstrates that you “get it.” Take your caring to the next level by recommending peer support resources that may be the most important topic you cover.
— Hope Warshaw, MMSc, RD, CDCES, BC-ADM, FADCES, is owner of Hope Warshaw Associates, LLC, a diabetes- and nutrition-focused consultancy based in Asheville, North Carolina. She’s the author of numerous books published by the American Diabetes Association. Warshaw served as the 2016 president of ADCES and currently serves on the board of the Academy of Nutrition and Dietetics Foundation.
1. Warshaw H, Hodgson L, Heyman M, et al. The role and value of ongoing and peer support in diabetes care and education. Diabetes Educ. 2019;45(6):569-579.
2. What is peer support? Peers for Progress website. http://peersforprogress.org/learn-about-peer-support/what-is-peer-support/. Accessed April 27, 2020.
3. Litchman ML, Walker HR, Ng AH, et al. State of the science: a scoping review and gap analysis of diabetes online communities. J Diabetes Sci Technol. 2019;13(3):466-492.
4. Warshaw H, Edelman D. Building bridges through collaboration and consensus: expanding awareness and use of peer support and peer support communities among people with diabetes, caregivers, and health care providers. J Diabetes Sci Technol. 2019;13(2):206-212.
5. Warshaw H. Addressing the mental health needs and psychosocial barriers to self-care for people with diabetes. On the Cutting Edge. 2018;39(6):1-36.
6. Litchman ML, Oser TK, Hodgson L, et al. In-person and technology-mediated peer support in diabetes care: a systematic review of reviews and gap analysis. Diabetes Educ. 2020;46(3):230-241.
7. Association of Diabetes Care & Education Specialists. How to incorporate peer support into your practice with Hope Warshaw. The Huddle. December 17, 2019. https://thehuddle.simplecast.com/episodes/how-to-incorporate-peer-support-into-your-practice. Accessed September 3, 2020.
8. Young-Hyman D, de Groot M, Hill-Briggs F, Gonzalez JS, Hood K, Peyrot M. Psychosocial care for people with diabetes: a position statement of the American Diabetes Association. Diabetes Care. 2016;39(12):2126-2140.
9. Hernandez M. % of time spent by people with diabetes with a medical professional in a year. Ask Manny Hernandez website. http://askmanny.diabetesblogs.com/2015/10/of-time-spent-by-people-with-diabetes-with-a-medical-professional-in-a-year/. Published October 1, 2015. Accessed April 27, 2020.
10. Tenderich A, Tenderich B, Barton T, Richards SE. What are PWDs (people with diabetes) doing online? A netnographic analysis. J Diabetes Sci Technol. 2019;13(2):187-197.
11. Association of Diabetes Care & Education Specialists. Learn, connect, engage. https://www.diabeteseducator.org/docs/default-source/living-with-diabetes/tip-sheets/peer-support/peer-support-tip-sheet---color-version.pdf?sfvrsn=4. Accessed April 27, 2020.
12. Association of Diabetes Care & Education Specialists. Virtual support groups: building community & online support for DSMES with Debra Hull. The Huddle. April 21, 2020. https://thehuddle.simplecast.com/episodes/online-support-groups-building-community-and-virtual-ongoing-support-for-dsmes. Accessed September 3, 2020.
13. Warshaw H. Making lemonade from lemons: meet PWD Manny Hernandez. Tandem Diabetes Care website. https://www.tandemdiabetes.com/blog/post/general/2020/01/20/making-lemonade-from-lemons-meet-pwd-manny-hernandez. Published January 20, 2020. Accessed April 27, 2020.
14. Pearson T, Warshaw H. Social Context of Diabetes (webinar). Lifescan Diabetes Institute. https://www.lifescandiabetesinstitute.com/webinar/behavior-change. Accessed April 27, 2020.
15. Warshaw H. Making lemonade from lemons: meet the Osers, for whom diabetes is a family affair. Tandem Diabetes Care website. https://www.tandemdiabetes.com/blog/post/general/2020/04/04/making-lemonade-from-lemons-meet-the-osers-for-whom-diabetes-is-a-family-affair. Published April 4, 2020. Accessed April 27, 2020.