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Dickinson & Guzman Part 3, Changing the Language of Diabetes

In part 3 of this Exclusive Interview, Drs. Dickinson and Guzman talk with Diabetes in Control Publisher Steve Freed during the ADA meeting in San Diego, California about the complications of changing the common language.

Jane K. Dickinson, RN, PhD, CDE is the Program Director and faculty for the solely online Master of Science in Diabetes Education and Management program at Teachers College Columbia University. Susan Guzman, PhD is a clinical psychologist specializing in diabetes. Her clinical and research focus areas include overcoming barriers to management, family issues, and promoting attitudes that support living well with diabetes, from diagnosis throughout the lifespan.

Transcript of this video segment:

Steve: Are there specific words that cause a problem?

Jane: Well, the reason I got interested in language and diabetes actually was way back almost 30 years ago at diabetes camp. We started talking about how the words that we were hearing and reading and even saying really had an impact on people’s experience with diabetes, and so at the camp we started looking at a few words in particular, and the first and foremost was “diabetic” and we really eradicated the word “diabetic” from camp and we started calling it the Ick word. and then we stopped saying “test” and we substituted test for checking blood glucose or blood glucose monitoring. The reason for that is because it’s not a test; it’s not a pass-fail or a good/bad, which was another set of words we got rid of at camp, which was good and bad. And there’s a lot of shame blame and judgment connected to those words like good and bad and compliance and adherence. “Control” is another one that can be very heavy for people with diabetes, so those are some of the words that I have noticed and mentioned, “denial…”

Susan: Yeah, “in denial” is another one of them. It’s not necessarily the words that we want to focus on, it’s the meaning behind them. Because words evolved and what we really want to communicate is that how we talk to people and about people with diabetes really matters and the words that we use have had an impact. They can contribute to stigma. They can push people away from wanting to take action and yet other words can really make people feel more included, more listened to, and not pushed away.

Steven: You guys are doing a good job because when I first started the newsletter I used the word “diabetic” a couple of times and must had a thousand complaints.

Jane: Really?

Steve: Yeah. People are well aware of words like that. Are there other specific words that you find problematic?

Jane: You know, believe it or not, and it’s a tough word to get rid of, but “prevention” is hard for people, especially people with type 2 diabetes. We had a conversation with a gentleman recently who said: “You know, if you do everything by the book and you do everything that they say, it will prevent type 2 diabetes” when you get it anyway, you feel like a complete failure,” and so what we try to say is “risk reduction” or “reducing risks.” Then “failure” is another one when you hear and read all the time somebody failed metformin or somebody failed sulfonylureas. They didn’t fail, the drug failed them. It didn’t work and so we try the next thing

Steve: So, it’s really the psychology of the word that really makes the difference. Would you say?

Susan: I would say it’s the meaning that it communicates, a lot of times these words like prevention are communicated with good intent, so it’s not necessary that they intend to be harmful but then, that whole stigma of diabetes is that that you did something to bring this on yourself and now you’re being punished as a result. So, when we say words like “prevent,” people think if you’ve done what you’re supposed to do he wouldn’t have diabetes and that unfortunately it’s not true for a lot of people, in fact most people.

Steve: Even in the political world we see a lot of misuse, and it’s really important because that goes to funding and politicians think it’s the person’s fault because they ate too much, they didn’t exercise, and they smoke or drink…

Susan: it’s a lifestyle of disease

Steve: …they should be punished, they don’t provide the income to help that patient. So the psychology of the word I guess is really important. How do change it? How do you change, especially you deal with medical professionals, how do you get them to change the use of these words?

Jane: Well, the thing I try to focus on is like, Susan said, the meaning for the messages behind what we’re saying and if we really change our mindset to: it’s not about us the professionals; it’s about the person sitting across from us or sitting next to us and so it’s, you know, a way to get rid of the words like “compliance” and “adherence” because compliance and adherence mean the person is supposed to be doing what I want, but when really it’s about the person, it’s not about what I want; it’s not my agenda, it’s theirs, so changing that mindset from it’s not about me the professional is one way to change the words

Susan: I think that we don’t want to be the word police. It’s something that she and I have talked about, it’s that, you know, people will turn to us and say “is that okay to say” and we want to push back and then say: What do you think? How do you think that makes people feel or how do you think that that comes across? Like we want people to think about the words, not just have a substitute word because that’s what really happened with non-compliance and adherence, nonadherence they just substituted the word. Non-compliance got to be like: “You don’t do what I’m telling you to do. You’re non-compliant and we decided as a profession that was unacceptable.” So, adherence was more like following a behavior, but it got substituted so instead of saying “that non-compliant patient,” people would say that “non-adherent patient,” and so it sort of lost the meaning behind it. Again, what Jane was saying, It’s not about the health care professional, so in patient-centered care, we’re focusing on the person. There’s good reasons people do or don’t things, and rather than judging that, we ask, why? How often are you taking your medications? And describing that as a behavior rather than they’re non-adherent.

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