Why language matters to people living with diabetes

A recent study conducted by The Australian Centre for Behavioural Research in Diabetes (ACBRD) explored the reactions to, perceptions and impacts of words and phrases used in communications about diabetes.

The purpose of the study

The language used in diabetes care is often negatively framed or based around metrics and targets. Terms commonly used in diabetes clinical care, such as ‘compliance’ and ‘control’, are inaccurate, simplistic and harmful.
These words can reinforce stigma, emotional distress and lead to disengagement from clinical services.

Study methods

Participants in this study were adults with lived experience of diabetes and parents of children with diabetes. Almost 1000 people completed a survey evaluating 22 commonly used diabetes-related words and phrases.

Respondents were asked to judge these terms based on whether they felt they were helpful, respectful, accurate, inaccurate, judgemental, harmful, or neutral. They were also asked how these terms made them feel – optimistic, motivated, supported, understood, offended, blamed, distressed, angry, or no emotional response.

In addition, the survey included open-ended questions to gather detailed feedback on the language people preferred or disliked, and its impact on their lives.

What the study found

A total of 865 people participated in the survey, including adults with different types of diabetes and parents of children with diabetes. Here are some key findings:

•  Negative reactions: About 60% of participants felt ‘non-compliant’ was judgemental, and nearly half felt blamed by this term. Similarly, ‘good/bad’ also had a negative impact – 54% felt it was judgemental and 43% felt blamed.
• Positive reactions: 73% of people found ‘managing diabetes’ to be helpful, while 47% felt understood by it. Similarly, ‘person with diabetes’ was seen as respectful (72%) and made people feel understood (49%). Other terms like ‘within/outside target range’ and ‘condition’ also had positive feedback, being viewed as respectful and helpful.

Key themes from comments

The study revealed five key themes based on participants' comments:

1. Accuracy and simplicity: Many participants preferred factual language. Words and phrases that are accurate, easy to use and accessible, without oversimplify their experience. For example, ‘just diabetes’ or ‘mild hypoglycaemia’ were considered dismissive.
2. Identity: Some participants with type 1 diabetes consider being ‘diabetic’ part of their identity and prefer the use of this term over ‘person with diabetes’. Others dislike the term diabetic, as they feel diabetes is something they live with, and not a defining characteristic. People with type 1 and type 2 diabetes rejected the terms ‘victim’ and ‘sufferer’.
3. Blame, judgement, and stigma: Language such as ‘self-inflicted’, ‘control’, and ‘good/bad’ were associated with a strong sense of personal failure. Some participants reported disengaging from clinical care,or lying about blood glucose readings to avoid judgement.
4. Respect and trust: Participants reported that health professionals can build trust by using neutral or positive language, without blame or judgement. Collaborative decision making also contributes to the person with diabetes feeling respected.
5. Support, hope, and feeling understood: Positive words/phrases include those that acknowledge the burden and complexity of diabetes. Displays of empathy and person-centred language result in people with diabetes feeling empowered and hopeful.

Conclusion

This study shows that language has the power to cause undue harm, and that many words/phrases are unacceptable to people with diabetes. It also highlights the alternative, more acceptable words that can replace them.

Equally, language has the power to communicate support, empathy and hope. This evidence supports the call for greater research into diabetes stigma and the role of language to support the emotional wellbeing of people with diabetes. It also reinforces the vital role of the #LanguageMatters movement, which recommends the use of person-first, non-judgemental and strengths-based language in policy, practice and all diabetes communications.

Read the full report here.