Why I’m an Unrelenting Peer Support Advocate

February 11, 2020
Diasome.comDiasome BlogWhy I’m an Unrelenting Peer Support Advocate
Hope Warshaw, MMSc, RD, CDE, BC-ADM
Hope Warshaw, MMSc, RD, CDE, BC-ADM, is a Registered Dietitian and Certified Diabetes Educator. Her career in delivering diabetes care and education has spanned nearly 40 years. She has owned and operated Hope Warshaw Associates, LLC, a consulting practice, about 25 years. She has been actively involved with promoting the role and value of peer support to people with diabetes, caregivers and healthcare providers for nearly a decade. She has been engaged in this work with other diabetes healthcare providers and leaders of peer support communities. She has been a longtime volunteer for several diabetes-focused organizations. She served as President of the Association of Diabetes Care & Education Specialists (ADCES) in 2016 after serving for several years on their Board of Directors. Currently serves in the role of secretary on the Academy and Nutrition and Dietetics Foundation Board. She currently lives, plays and works in the beautiful mountains of western North Carolina in Asheville.
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It was roughly a decade ago when I discovered a small, yet mighty and growing, contingent of people with diabetes (PWD) who were using social media to network and support each other. Alongside several Peer Support Communities (PSC) were cropping up. Concomitantly I began to dip my toes into social media with the thought of using this medium to promote my business and interact with colleagues. Little did I know that lurking on the dynamic connections PWD were making via social networking platforms would lead me to do some of the most fulfilling work of my career in diabetes care!

My career as a registered dietitian spans 40 years now and by happenstance I’ve spent all of these years delivering diabetes care and education in a number of settings and through numerous communication vehicles. Let’s just say I got hooked early on!

I’ve believed for a long time we’ve not paid nearly enough attention to the mental health aspects of managing this demanding disease. For this reason, I’m delighted that the role of mental health, perhaps the better term is emotional wellbeing, in diabetes care has risen of late to a higher priority. This is critical to person-centered care, quality of life and good outcomes for PWD. Several diabetes-focused organizations have spotlighted the role of emotional wellbeing. In 2016 the American Diabetes Association (ADA) published a position statement, Psychosocial Care for People with Diabetes (1) and in 2017 the Association of Diabetes Care & Education Specialists (ADCES) initiated a collaboration with PSC which continues today. (2,3,4)

So we’re all on the same page, let me share a concise definition of peer support, “the interaction, education and support offered by peers with the same condition to promote health-enhancing change.” (5)

With the above as backdrop I’ll delve into why I’ve become an unrelenting peer support advocate. As I observed the burgeoning diabetes online community (DOC) back in 2010 I reached out to leaders of several of the PSC, specifically David Edelman with DiabetesDaily (https://www.diabetesdaily.com/), Manny Hernandez, founder of Diabetes Hands Foundation and TuDiabetes/EsTuDiabetes (https://tudiabetes.org/), and Amy Tenderich, founder and editor of DiabetesMine (https://www.healthline.com/diabetesmine); to determine their interest in presenting about peer support at the 2011 ADCES annual conference. They were game! In 2011 we provided a session titled, What the Heck is Going on in the DOC? As a foursome we presented sessions at ADCES over the next several years and have developed lasting friendships.

My goals in this endeavor were, and continue to be, bidirectional. It’s important for PWD to know about the services Diabetes Care and Education Specialist (DCES) (ADCES's new title for the specialty (6)) have to offer and conversely for DCES to know about the role and value of peer support to PWD and their caregivers.

In 2011 I was elected to the ADCES Board of Directors and in 2015 – 2017 I served as a volunteer leader, including as president in 2016. In 2014 ADCES put a new CEO, Charles Macfarlane, in place. He saw the importance of working closely with leaders of PSC along with the value of peer support. Over the last few years I’ve been privileged to work in tandem with ADCES on initiatives that promote the role and value of peer support as a part of the holistic care for PWD and caregivers. These initiatives are chronicled. (2,3,4)

Last, but not least, I was recently asked to lead a writing team with a group of colleagues (including PWD) to develop and publish an ADCES Perspectives in Practice paper on the role and value of ongoing and peer support in diabetes education (7). The publication concludes, “Various types of support offered by HCPs…and others within the PWD’s social support milieu, can positively affect a person’s emotional well-being. It is important for DCES to routinely assess the PWD’s social support and include in this assessment others in that person’s support network…In addition, there are numerous ways DCES who have minimal insight into the diabetes-lived experience can gain greater insight by engaging online and in person with PWD and caregivers.” (7)

Through my involvement promoting peer support what feeds my heart more than anything is the first-hand accounts and observations about why meeting, talking, sharing, advocating, etc., can be life-changing for PWD. Some refer to this as ‘finding their tribe’. We know that managing diabetes is arduous and unrelenting 24/7/365. Living life with diabetes can also be isolating, lonely and stigmatizing. Surrounding oneself with a community of people who “get it” truly matters. A valuable paper by Tenderich, et al, reported on a netnographic analysis of how and why people were engaging online (8). Findings revealed six main themes: 1) humor, 2) diabetes pride, 3) community building, 4) personal relationship with diabetes technology, 5) management tips and tricks, 6) venting about having diabetes.  

As a HCP and DCES, I’m fully committed to doing what is in my power to help PWD and caregivers engage with peers who get it and PSC that help PWD get support and give it, too. PWD and caregivers need to become aware that there are PWD to connect and engage with. HCP need to become aware that peer support can be vital to emotional wellbeing and quality diabetes care. HCP need to ask questions of PWD (7), that address emotional wellbeing, sources of social support, and desires to connect with other PWD.

PWD can find resources on ADCES's website here: (https://www.diabeteseducator.org/living-with-diabetes/Tools-and-Resources/peer-support and HCP can find resources here: https://www.diabeteseducator.org/practice/educator-tools/app-resources/peer-support-for-healthcare-professionals to learn about and promote the value of peer support. The Learn-Connect-Engage resource found at both links lists some of the more well-known PSC.

Yes, I am and I will continue to be an unrelenting advocate of peer support for PWD and caregivers. Why? Because it makes a difference in people’s lives! Whether you’re a PWD, caregiver or HCP, please join me in this endeavor. Let’s magnify our collective efforts!      

References:
  1. 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.
  2. 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.
  3. Warshaw H. The collaboration between AADE and Peer Support Communities: A look back, then forward. https://www.diabeteseducator.org/news/perspectives/aade-blog-details/aade-perspectives-on-diabetes-care/2019/12/16/the-collaboration-between-aade-and-peer-support-communities-a-look-back-then-forward. Accessed December 18, 2019.
  4. AADE, Warshaw H. The Huddle Podcast – How to incorporate peer support into your practice. https://diabetes-illuminated.simplecast.com/episodes/how-to-incorporate-peer-support-into-your-practice. Accessed December 18, 2019.
  5. 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.
  6. AADE. A statement from AADE – A new title for the specialty. https://www.diabeteseducator.org/news-and-publications/press-releases/press-releases/2019/08/20/a-statement-from-the-american-association-of-diabetes-educators---a-new-title-for-the-specialty. Accessed December 18, 2019.
  7. Warshaw H, Hodgson L, Heyman M, et al. The role and value of ongoing and peer support in diabetes care and education. The Diabetes Educator. 2019;45(6):569-579.  
  8. 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.

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