An international effort aims to end diabetes stigma and discrimination in all its forms, including that experienced by people with the condition in clinical settings.
A new consensus statement
Bringing an End to Diabetes Stigma and Discrimination: An International Consensus Statement on Evidence and Recommendations was published in the January 2024 issue of The Lancet Diabetes and Endocrinology.
The term diabetes "stigma" refers to "negative social judgements, stereotypes, and prejudices about diabetes or about a person or group due to their diabetes, occurring typically in the context of a power imbalance." Data suggest that approximately one in four adults with either type 1 or 2 diabetes experience some aspect of diabetes stigma, with some studies pointing to greater frequency among specific subgroups, the document said.
There is plenty of research now showing that diabetes stigma is prevalent and that it's a problem. It has many impacts on people's lives, not just on psychological well-being but on their physical health, their self-care, and their professional and social lives."
Perceived Judgement Can Keep Patients Away
The statement consolidated and summarized current evidence and made recommendations for patients, family and community, employers, educational settings, public health, policymakers, and clinicians, among others. "First and foremost, this is about acknowledging the diabetes stigma and discrimination that people with diabetes are experiencing across the world, in many aspects of their lives, and enabling them to be empowered by the fact that they're not alone and that it's okay to call it out," Speight said.
The document advised, "health professionals supporting people with diabetes need to ensure their practice is stigma-free. Training in stigma-free consultation skills needs to be implemented early in clinical training and demonstrated through continuing professional development and accreditation, and professional bodies need to include stigma-free practice in their professional standards."
For clinicians in particular, a recurrent theme that people with diabetes often report is being blamed or judged for having (type 2) diabetes, its complications, or things they do wrong that lead to consequences such as hyperglycemia or hypoglycemia. Such issues can be magnified during pregnancies complicated by diabetes.
"A common type of stigma that we hear from people with diabetes is healthcare professionals not really appreciating the complexities of managing diabetes or the amount of effort that it takes to manage it," Speight noted.
The statement summarized studies showing that some healthcare professionals believe that type 2 diabetes is a result of "lifestyle choices" and that people with type 2 diabetes are less worthy of empathetic clinical care compared with those with ype 1 diabetes. In one survey, a medical student was quoted as saying, "I do judge the people that develop diabetes later in life because of poor lifestyle and eating habits. I see this as a lack of concern for their own well-being. In general, I find obesity and those who let themselves gain ridiculous amounts of weight to be disgusting."
Perhaps not surprisingly, the document also cited evidence that such attitudes result in a lack of trust in their providers and lack of adherence to diabetes management practices. "We know that approximately 30% of people with diabetes don't attend their healthcare consultations. When studies have asked why, one of the key things that comes through is that they feel judged at their appointments, and so they don't feel they want to subject themselves to that," Speight said.
A better approach, she advised, is for healthcare professionals to "be supportive and be on the side of the person with diabetes and acknowledge how challenging it is and ask them what they need to be supported."
Will You Take the Pledge?
The statement included a Pledge to End Diabetes Stigma" that has been endorsed by several major diabetes organizations including the American Diabetes Association, the European Association for the Study of Diabetes, Diabetes UK, the International Diabetes Federation, and JDRF. Signatories also include pharmaceutical and device manufacturers, medical centers, and nearly 300 individuals.
Thus far, the pledge has mostly been taken by organizations and individuals in the diabetes space, but the authors would like to see it expanded more broadly to arenas such as workplaces, retail, education, airlines, and medical groups that aren't specifically focused on diabetes. "That's one of our ambitions…We need these types of organizations to be aware of it," Speight said.
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