Do the words we use really matter to people living with diabetes?

A new US qualitative study has explored whether #LanguageMatters to people living with diabetes.

In the UK, Diabetes Week (11-17 June 2018) is focused on the theme #TalkAboutDiabetes. Several health professionals, researchers, people with diabetes and organisations including NHS England, Diabetes UK and JDRF UK have come together to publish new #LanguageMatters guidance. Posts across social media suggest that language matters to many people affected by diabetes but how do they experience the impact of the words and messages used toward them and around them?

In a recently published qualitative study, Dr Jane K. Dickinson (Columbia University, USA; lead author of the ADA and AADE joint paper on language) asked people living with and affected by diabetes about the language of diabetes. She conducted two virtual, internet-based focus groups and two live, in-person focus groups with a total of 68 adults. Dr Dickinson asked study participants the following six questions:

What diabetes-related words have a negative impact on you?
How do you feel when you hear those words?
What particular experiences do you recall that involved words and diabetes?
If you could ask your diabetes care professionals to stop using one word, what would it be?
If there is another word(s) that you’d like them to stop using, please share it (them) as well.
How do you think not using those words would affect your diabetes experience?

Participants reported that many words are frustrating, hurtful, and potentially damaging to them. These words communicate

Judgment: “compliance/adherence,” “control,” “controlled/poorly controlled,” “lazy,” and “good/bad”
Directives: “should/shouldn’t,” “have to,” “need to,” and “can/can’t”
Labels: “diabetic” and “brittle”
Misinformation or disconnection: “you’re fine,” “normal,” and “cure”

Participants shared that these negative words lead to fear, anxiety, shame, and sometimes anger. They said they experience negative language at healthcare visits, school, work, home, and in the media and in public. Participants also reported that body language and tone are just as important as words.

A concern that emerged from the focus group discussions was that if healthcare professionals don’t change their mindset toward diabetes and people living with diabetes, the words we use to replace current “problem words” will grow to associate with the same issues. We have already seen this with many health professionals opting to replace “compliance” with “adherence”, but with the same underlying meaning that they expect the person to “stick to” a regimen that they (the professional) have recommended, without appreciating that managing diabetes typically requires much more flexibility and adaptation. This highlights the importance of truly understanding the nature of diabetes self-management, and removing stigma, labels, and judgment completely and not simply using different words.

Study participants identified that they would trust their healthcare professionals and feel like a partner in their own diabetes care if the language of diabetes were to change. The focus would become the person, rather than the condition, which in turn leads to optimism and self-determination.

Reference: Dickinson JK (2018). The experience of diabetes-related language in diabetes care. Diabetes Spectrum, 31(1), 58-64.