Representatives from both the American Diabetes Association (ADA) and the American Association of Diabetes Educators (AADE) recently convened to identify ways to improve language and communication about diabetes in both clinical and educational settings. The joint task force reviewed existing literature about the impact of language on disease outcomes, suggested ways to reform language, and identified opportunities for further scholarship on the subject.
The task force reported that individuals with diabetes overwhelmingly report disease-related stigmas. According to one study cited, the most common stigmas experienced include having a character flaw and being a weight on the healthcare system. Language plays a big role in promoting such stigmas and attitudes about diabetes, so it is essential for providers and educators to be more sensitive when writing or speaking about diabetes.
The committee found that, when it comes to language, individuals with diabetes are most negatively impacted by words that imply moral judgment. In fact, individuals report that they often alter or underreport blood glucose levels or exclude other necessary information during visits for fear of being condemned by providers. This is especially true for adolescents.
To counter this and other negative trends within diabetes communication, the task force encouraged “nonhandicapping language.” Nonhandicapping language “maintains the integrity of individuals as whole human beings.” It avoids implying that a whole person is disabled (e.g. “a diabetic child”); equates a person with a condition (e.g. “diabetic”); has superfluous or negative overtones (e.g. “suffering from” or “unmotivated”); or implies judgment (e.g. “noncompliant” or “poorly controlled.)
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The task force provided an extensive table with examples of the potentially negative words and suggested alternatives that are strengths-based, respectful, inclusive, and hopeful. For instance, professionals and caregivers should replace words like “compliant” and “adherent” with detail about what the individual does to achieve goals, such as “He takes his medication about half the time” or “She takes insulin whenever she can afford it.” These statements emphasize the individual’s contributions to self-care, rather than his or her negative behaviors.
Another example is the replacement of the word “control.” Instead of saying that diabetes is “poorly controlled,” a provider could indicate “She is checking blood glucose levels a few times per week” or “He is taking sulfonylureas, and they are not bringing his blood glucose levels down enough.” The rationale for avoiding the word “control” is this: “Control is virtually impossible to achieve in a disease where the body no longer does what it is supposed to do.”
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The table also suggests replacing directives with suggestive phrases. For example, providers should replace “do this” or “don’t do that” with “Have you tried this?” or “May I tell you what has worked for other patients?” Providers should also replace threatening language with positive language. Rather than listing serious complications associated with the disease, the provider should say, “More and more people are living long and healthy lives with diabetes. Let’s work together to make a plan that you can do in your daily life.”
While the guidelines are geared towards health care providers and diabetes educators, they may also assist “family members and caregivers of people with diabetes, corporate spokespeople, and members of the media who are in a position to speak and write about diabetes.” The task force acknowledged that the guidelines should not apply to individuals with diabetes. In other words, while professionals should follow these guidelines in their practice, they should not impose the language standards on patients.
The task force also acknowledged that the meanings of particular words evolve over time. So, words that have a positive connotation today may have a negative connotation in the future—and vice versa.
The report concludes by identifying areas for further research. Most research on the topic has focused on qualitative methods that demonstrate the relationship between language use and individuals’ experience of the disease. Future research could examine questions like the following:
· What is the relationship between language and stigma in diabetes?
· What is the effect of language in different types of diabetes, age-groups, and cultures?
· What is the role of expectancy theory in diabetes?
· What is the impact of language in the media on people with diabetes?
· What is the effect of language on patient engagement/motivation and diabetes outcomes?
· Does changing the language of diabetes improve outcomes?
· What is the effect of language on patient-provider relationships?
· What are effective ways to teach health care professionals about language?
You can read the full report here.
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