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Facebook Groups and Type 1 Diabetes

Info: 2669 words (11 pages) Essay
Published: 8th Feb 2020 in Media

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Type 1 Diabetes (T1D) is an autoimmune disease that affects nearly 1.25 million people in the United States and each year an additional 40,000 people are diagnosed with the disease (Type 1 Diabetes, 2018). T1D affects the body by preventing the pancreas from producing insulin which is necessary in breaking down glucose and creating energy needed by each living cell. Being diagnosed with T1D creates significant day-to-day challenges in living a healthy life and requires coordination with primary care physicians, endocrinologists, eye doctors, dieticians, diabetes educators, and pharmacists. Additionally, in the case of children being diagnosed, parents need to coordinate with family, school officials, teachers, and other individuals involved in a child’s daily routine. The amount of care and management involved in treating T1D leaves many people feeling overwhelmed while adjusting to their new normal and they look for support and advice online from other people who have gone through similar experiences. One outlet that people turn to are Facebook groups dedicated to T1D communities.

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As social media has become more intertwined into people’s lives over the last decade, it has also played an increasingly larger role in how people learn to live with and learn more about diseases that affect them. A particular aspect of social media which has an important part in this process are Facebook groups. In the T1D community, communities of individuals have taken to the social media giant to share information and support with other people who are affected by the same disease. These groups create their own sub-societies which further understanding about T1D, the various technologies used in managing the disease, and have become a vital secondary resource to the overall healthcare practices involving T1D.

Why Facebook Groups?

Living with T1D requires a continuous self-management regime involving insulin needles and pumps, periodic checking of blood glucose numbers, and constant calibration. Unlike people who are diagnosed with Type 2 Diabetes, T1D individuals are completely insulin dependent and do not have the option of managing their disease through diet and exercise alone. Therefore, managing T1D is a continuous, daily concern. One of the reasons why people living with or managing another’s T1D seek out online communities is to see how others have coped with this daily struggle.

By connecting with others who are currently going through the same self-management of T1D, individuals gain access to what social scientist Jeannette Pols defines as patient knowledge, which is a practical knowledge that “patients create and relate to during daily life with illness” (Kingod, 2018). In the context of T1D, patient knowledge can deal with tips on how to manage blood sugar levels while participating in sports, or how to keep insulin safe while going on a beach camping trip. These types of situations aren’t always covered during meetings with healthcare providers and having the ability to draw on experiences from others is a useful factor in why more and more people join these online communities.

Another significant reason why people join T1D Facebook groups is to gain support and seek validation from others living with the disease. The diagnosis of T1D can be a dramatic event for many people. Many diagnoses occur can after being hospitalized as a result of diabetic ketoacidosis which results from the body’s inability to produce insulin. After which, patients are then left with the realization that they must adjust to a vastly different daily routine to manage what will be a life-long chronic illness. Making connections and receiving support from others through Facebook groups are some of the ways people choose to cope with this realization. Being able to connect and share with others is one of the five therapeutic affordances of social media described by Merolli et. al. in a 2014 study. This study demonstrated the effects of social media on patient groups and found that connecting with others who have the same chronic illness led to increased patient self-esteem and self-worth by sharing support and information, and decreased feelings of loneliness and isolation which can result from being afflicted by a chronic illness (Merolli, Gray, & Martin-Sanchez, 2014).

From more of a theoretical standpoint, the reasons behind individuals choosing to learn more about self-care and management of their diseases result largely from the patient empowerment model of healthcare introduced in the 1980s (Bond, Merolli, & Ahmed, 2016). In lieu of depending on healthcare professionals to provide every detail of how to manage a chronic illness, the empowerment model encourages patients to “develop the capacity to take responsibility for their own health and to have the knowledge necessary to be able to make decisions, the resources to carry out those decisions, and the experience to be able to evaluate their effectiveness” (Bond, Merolli, & Ahmed, 2016).  Facebook groups foster this type of patient empowerment and give patients the ability to construct the necessary knowledge and share resources and experiences with their peers.

Better Understanding T1D

Although a great deal of information regarding T1D is supplied to patients through physicians and diabetes educators, Facebook groups act as much needed secondary sources which provide a wealth of information outside of scheduled visits to healthcare providers. After being diagnosed, patients are provided with tons of information from endocrinologists and diabetes educators and the sheer amount of information can initially be somewhat overwhelming and ultimately questions arise after leaving the hospital. When these types of question arise regarding self-care, Facebook groups and a community of peers can provide valuable assistance. While there is some concern about the quality of information being provided through these channels, information can be fairly reliable with false information being quickly corrected by others in a large group (Labate, 2013).

T1D Facebook groups also serve as a resource for learning more about type 1 diabetes and understanding the differences between type 1 and type 2, especially for family members, teachers, or friends of those living with T1D. By being connected with patients who are members of T1D groups, family and friends can sometimes see and access the information being shared from the group and gain a better understanding about the disease for themselves. This gained understanding gives them a better insight into the T1D community and can result into a heightened perception of the needs of those living with the disease.

However, one of the largest knowledge gaps that Facebook groups can fill revolves around the plethora of technologies that are used to manage T1D. From different insulin types, insulin pumps, and glucometers, there are hundreds of different options for managing T1D and with each there are different strengths and weaknesses. By drawing on the experiences of others within the T1D community, patients can make better informed decisions when determining the best options for themselves. And after selecting a particular piece of technology, there are various Facebook groups for users of those particular brands of insulin pumps and glucose monitors which help each other through the different quirks and difficulties of using those devices. For example, Dexcom’s continuous glucose monitors (CGMs) are one of the most popular forms of tracking blood glucose (BG) levels because unlike traditional stick and check methods they provide context around the BG number and inform the user if they are trending upward or downward. One Facebook group, Dexcom G5/G6 Users, has over 23,000 members with 2,220 posts in the last thirty days and provides a space where Dexcom users share ideas on the best body infusion sites for mounting the monitor, different ways on how to prevent the monitor from falling off, and other technical issues about the device (Dexcom G5/G6 Users, 2018). Although some of this information can be provided by healthcare providers, this is an area where practical patient knowledge can usually prove to be much more beneficial in everyday life.

Reshaping T1D Healthcare

With Facebook groups becoming more prevalent in the T1D community, their usefulness and practicality has become noticed and is beginning to be adopted by some healthcare practitioners and researchers. The fact that so much helpful information is available to T1D patients through online communities and that many patients only visit their endocrinologists once or twice a year, a growing number of physicians have begun encouraging their patients to utilize these communities (Syed-Abdul, Gabarron, Lau, & Househ, 2016). While healthcare providers are recognizing the usefulness in Facebook groups for T1D patients, part of the motivation for promoting patient use of social media lies in the increased workload faced by many medical practitioners. Healthcare providers across the U.S. “face increased pressure, having to deal with more patients and complete more paperwork in the same amount of time” (M Eng, 2015). By promoting patient empowerment and incorporating the use of Facebook groups and social media into the overall healthcare of their patients, healthcare providers are trying to eliminate some of this burden while still providing adequate care.

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Facebook groups are also starting to play an important role in research about T1D and self-care practices. For medical researchers, Facebook groups are an excellent resource to recruit patients and study patient outcomes. Over the past decade, various studies have been conducted using Facebook as a recruiting tool for T1D studies. One study published in 2015 utilized an Italian T1D Facebook group to study patient outcomes of children whose parents participated in the group. The results of this study indicated that the use of Facebook led to improved T1D management and care in children (Troncone, Cascella, & Chianese, 2015). Another study in 2018, which examined individuals using Facebook and Viber, concluded that “adolescents and young people with T1D who use social media in everyday practice achieved better [glucose] control compared to patients without social media use” (Petrovski & Zivkovic, 2018). These examples show that Facebook groups and social media, in general, provide a unique opportunity to study large populations of people living with T1D.

The large communities of people living with T1D and connected through Facebook groups also leads to improved patient advocacy for T1D. Not only is there evidence that “patients who become empowered by social media connections become better advocates for themselves,” but collectively these large groups have created substantial political and medical clout for T1D patients (M Eng, 2015).  Beyond Type 1 and JDRF , which are both nonprofits with a large Facebook presence of 1.1 million and 200,000 followers, respectively, feature prominently in posts shared throughout various T1D Facebook groups. These nonprofits which use their online presence to raise funds and awareness for T1D also use their status to lobby Congress and insurance providers on behalf of T1D patients. In the medical field, the power of patient advocacy groups on Facebook and social media has been the driving force behind awareness of latent autoimmune diabetes in adults, which is a subgroup of T1D, “as a plausible diabetes diagnosis among adults” (M Eng, 2015). As these examples demonstrate, Facebook groups and social media are increasing the power of T1D patients and giving them more control in the future of T1D healthcare.


Facebook groups have the ability to instantly connect millions of T1D patients to their peers to share knowledge and stories about living with this chronic disease. Because of this instantaneous connection and the fact that such little time is spent actually communicating with physicians and diabetes educators, Facebook groups have become a valuable resource in better understanding T1D and learning practical patient knowledge about day-to-day self-management of the disease and the various technologies involved. The rising popularity of T1D Facebook groups also means that each year more and more people are learning about T1D through these groups and that they have become a significant factor in how T1D information is disseminated throughout the T1D community and the public. In addition to disseminating information about T1D, Facebook groups are also playing an integral role in how new knowledge about T1D is being generated as they offer an invaluable resource in recruiting engaged patients for research purposes related to the disease.

Furthermore, these online communities of individuals living with T1D empower patients by giving them the ability to make better informed decisions regarding their care and become better advocates for T1D healthcare. Patient advocacy efforts from Facebook groups and other social media platforms have given a larger voice to T1D patients, allowing them to have a direct involvement in how T1D healthcare concerns are addressed in governmental, insurance, and medical policies throughout the country. Through these collective efforts, Facebook groups will not only continue to be a valuable source in understanding T1D but also in the creation of new knowledge about the disease and in the determination of how T1D will be managed and cared for in the future.


  • Bond, C., Merolli, M., & Ahmed, O. (2016). Chapter 2 – Patient Empowerment Through Social Media. In Participatory Health Through Social Media (pp. 10-26). Academic Press.
  • Dexcom G5/G6 Users. (2018, December 12). Retrieved from Facebook: https://www.facebook.com/groups/1691039397784554/
  • Kingod, N. (2018). The Tinkering m-patient: Co-constructing knowledge on how to live with type 1 diabetes through Facebook searching and sharing and offline tinkering with self-care. Health.
  • Labate, C. (2013, September 1). Social media’s influence on diabetes treatment & self care. Retrieved from diabetes australia: https://www.diabetesaustralia.com.au/news/11102?type=articles
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  • Merolli, M., Gray, K., & Martin-Sanchez, F. (2014). Therapeutic Affordances of Social Media: Emergent Themes From a Global Online Survey of People With Chronic Pain. Journal of Medical Internet Research, 16(12).
  • Petrovski, G., & Zivkovic, M. (2018). Are We Ready to Treat Our Diabetes Patients Using Social Media? Yes, We Are. Journal of Diabetes Science and Technology, 1-5.
  • Syed-Abdul, S., Gabarron, E., Lau, A., & Househ, M. (2016). An Introduction to Participatory Health Through Social Media. In Participatory Health Through Social Media (pp. 1-9). Academic Press.
  • Troncone, A., Cascella, C., & Chianese, A. (2015). Using Computerized Text Analyis to Assess Communication within an Italian Type 1 Diabetes Facebook Group. Health Psychology Open.
  • Type 1 Diabetes. (2018, December 11). Retrieved from American Diabetes Association: http://www.diabetes.org/diabetes-basics/type-1/


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