When it comes to diabetes, language can shape perception, and perception can, in turn, affect self-care.
That was the focus of a recent Society of Behavioral Medicine webinar hosted by Allyson S. Hughes, PhD, a research scientist with T1D Exchange, and Elizabeth A. Beverly, PhD, an associate professor of Family Medicine at the Ohio University Heritage College of Osteopathic Medicine. The two presenters shared strategies for health care professionals to reduce diabetes stigma by employing language that best matches the individual preferences of people with diabetes.
Diabetes Stigma is Widespread
The value of such a discussion on word choice reaches far beyond the academic or theoretical for people managing chronic conditions. Many people with diabetes have reported facing stigma associated with the condition, according to Dr. Beverly. Such diabetes stigma can include feelings of exclusion, rejection, and blame.
This stigma is also widespread. In a 2017 study of 5,422 adults with diabetes, 76% of people with type 1 diabetes and 52% of people with type 2 diabetes reported experiencing diabetes stigma. Much of this stigma stems from the misconceptions that people with diabetes are solely responsible for having the condition and the medical outcomes of living with the condition.
“Too often, people are quick to assign negative personality attributions to people with diabetes, as well”, Beverly said. Such criticism can come from those nearest and dearest.
“Research has documented there has been negative attributions (assigned to people with diabetes) from health care professionals, friends, and family members,” she said.
Those who experience high levels of diabetes stigma are more likely to report higher levels of psychological distress, poorer quality of life, and depressive symptoms, Beverly said. This can cause people with diabetes to hide their diabetes management or delay or skip treatment, especially in public. Perhaps not surprisingly, then, this population is more likely to report higher HbA1c and have a higher risk for complications, according to the research.
How Health Care Professionals Can Help With Word Choice
In 2010, advocates with Diabetes Australia began an effort to reshape the words used to describe those with diabetes, according to Beverly. That effort spread internationally, and in the U.S. led to the creation of a joint task force of members of The American Diabetes Association and The American Association of Diabetes Educators to discuss ways to make language used by clinicians more person-centered.
That effort led to a 2017 position paper with a series of recommendations on word choice:
- Use language that is neutral, nonjudgmental, and based on facts, actions, or physiology/biology.
- Use language that is free from stigma.
- Use language that is strengths-based, respectful, inclusive, and imparts hope.
- Use language that fosters collaboration between patients and providers.
- Use language that is person-centered.
The presenters shared examples, including:
-Choosing “person with diabetes” over “diabetic”
-Choosing “manage” over “control” when it comes to blood sugar
-Choosing “engagement” over “compliance or adherence”
However, a health care professional who wishes to utilize more person-first language will need to do more than simply memorize a new list of vocabulary. As Dr. Hughes discussed in the webinar, language choice is often individualized among people with diabetes, and what applies to one person may not apply to another.
“Language is complicated and it can seem very complex, but each person likely will have their own preference,” she said.
As an example, Hughes shared a recent T1D Exchange Glu poll question asking respondents whether they preferred to be referred to as a “diabetic” or a “person with diabetes”. The responses show the diversity in thought among the diabetes community:
Health care professionals also should carefully consider their word choice when broaching certain topics that can be emotionally complex subjects for people with diabetes, including food, finances, and sleep, Hughes said.
The goal, the two presenters said, is to foster a collaborative conversation between health care professionals and patients, one that is individualized to the individual needs of each patient. A good way to become more fluent in such language is to follow person-led discussions on social media and diabetes-specific websites, Hughes suggested. It’s important to remember that it’s a process, she said.