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Stigma complicates online interactions in diabetes community
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BALTIMORE — Members of the diabetes online community identify judgment, education and health care teams as major themes related to stigma, according to findings presented at the American Association of Diabetes Educators annual meeting.
“Stigma is pervasive in the world when talking about diabetes, and stigma makes managing and living with diabetes much harder,” Deborah A. Greenwood, PhD, RN, consultant and research scientist at Deborah Greenwood Consulting and past president of the AADE, told Endocrine Today. “The diabetes online community can create an opportunity for ongoing social support and create an opportunity to educate the greater community about the negative/incorrect information that exists that leads to stigma.”
Researchers created a survey for English- and Spanish-speaking diabetes online community members by adapting questions from the Diabetes Stigma Assessment Scale, and participants ranked the questions they felt most applied to their experiences of diabetes and stigma.
The top seven questions were then presented during two Twitter chats, which garnered 1,107 tweets from 150 participants, in November 2016.
Using a qualitative content analysis, researchers evaluated a verbatim transcript of the Twitter data, first looking at the data as a whole and then grouping the data into categories based on theme.
Researchers found that members of the diabetes online community identified three major themes: judgment, education and comprehensive health care.
The judgment theme consisted of ideas related to criticism from other people and health care providers about weight and lack of discipline. A focal point for the education theme was that those with diabetes must better inform others about the condition. The health care theme emphasized the importance of the patient-provider relationship.
The language used in health care can directly cause the stigma people experience, according to Greenwood.
Greenwood recommended that diabetes educators learn about the diabetes online communities that exist and refer their patients to quality online peer support groups to help them manage their diabetes and learn from others living with diabetes.
“CDEs can advocate for and incorporate empowering language in their practice and model use of language that does not judge, blame and shame,” Greenwood said. “Incorporating these practices can help decrease the stigma associated with diabetes.” – by Melissa J. Webb
References:
AADE language guideline. 2017. Available at: www.diabeteseducator.org/practice/educator-tools/diabetes-language-paper.
Greenwood DA, et al. Perceptions of stigma in the diabetes online community: Challenges of day-to-day living shared during Twitter chats. Presented at: American Association of Diabetes Educators; Aug. 17-20, 2018; Baltimore.
Disclosure: Greenwood reports no relevant financial disclosures.
Perspective
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Jane K. Dickinson, RN, PhD, CDE
Stigma is a problem in diabetes, and it is very much connected with language and messaging. The vast majority of people in the diabetes online community live with type 1 diabetes, and it is likely that the stigma specifically attached to type 2 diabetes contributes to keeping this group of people from participating in online peer support at the same level. While it is getting better, there is sometimes still a mindset in those with type 1 diabetes of, "I don't have the kind of diabetes that I brought on myself." This perpetuates stigma right in the support arena, which can be devastating and detrimental to those living with type 2 diabetes. Health care professionals play an important role in setting an example by using accepting, respectful, hopeful, non-judgmental and person-centered language so that those living with diabetes hear it and adopt it as well. The American Association of Diabetes Educators has developed resources on language and diabetes for health care professionals, media people and the general public. They are available on the AADE website (www.diabeteseducator.org).
Diabetes Education and Management
Teachers College Columbia University
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