Foundational Research on Diabetes Stigma
FOR HEALTHCARE PROFESSIONALS
The field of research on diabetes stigma is growing. Researchers are continuing to build on our knowledge of what diabetes stigma is, what its impact is on people with diabetes, and how we can begin to address it. Here are key research findings from leading experts in the field.
Bringing an end to diabetes stigma and discrimination: an international consensus statement on evidence and recommendations
Takeaways
To accelerate an end to diabetes stigma and discrimination, 51 multidisciplinary experts from 18 countries conducted a review of the literature and achieved consensus on 25 statements of evidence and 24 statements of recommendations as well as a Pledge to End Diabetes Stigma. This group identified key themes in diabetes stigma research and advocacy, namely:
- Diabetes stigma is driven primarily by blame, perceptions of burden or sickness, invisibility, and fear or disgust.
- On average, four in five adults with diabetes experience diabetes stigma and one in five experience discrimination (ie, unfair and prejudicial treatment) due to diabetes, such as in health care, education, and employment.
- Diabetes stigma and discrimination are harmful, unacceptable, unethical, and counterproductive.
- Collective leadership is needed to proactively challenge, and bring an end to, diabetes stigma and discrimination.
Speight, J., Holmes-Truscott, E., Garza, M., Scibilia, R., Wagner, S., Kato, A., … & Skinner, T. C. (2024). Bringing an end to diabetes stigma and discrimination: an international consensus statement on evidence and recommendations. The Lancet Diabetes & Endocrinology, 12(1), 61-82.
Social stigma in diabetes: a framework to understand a growing problem for an increasing epidemic
Takeaways
Social stigma is a concern for people with diabetes and is experienced in many domains of their life. A new framework can help people better understand diabetes stigma in terms of:
- Causes: attitudes of blame, feelings of fear and disgust, a felt need to enforce social norms and avoid disease
- Experiences: being judged, rejected, and discriminated against
- Consequences: distress, poor psychological well-being, sub-optimal self-care
Strategies to address stigma include education, protest, counseling, and social support.
Schabert, J., Browne, J. L., Mosely, K., & Speight, J. (2013). Social stigma in diabetes : a framework to understand a growing problem for an increasing epidemic. The patient, 6(1), 1–10.
“I call it the blame and shame disease”: a qualitative study about perceptions of social stigma surrounding type 2 diabetes
Takeaways
Interviews with people with type 2 diabetes showed that they believe their condition is stigmatized and many have experienced stigma directly. These interviews highlighted themes related to:
- Experiences: blame, negative stereotyping, and discrimination
- Sources: media, healthcare professionals, friends, family, and colleagues
- Consequences: hiding their diagnosis and psychological stress
The researchers believe more studies should be conducted to identify ways to measure and address stigma.
Browne, J. L., Ventura, A., Mosely, K., & Speight, J. (2013). ‘I call it the blame and shame disease’: a qualitative study about perceptions of social stigma surrounding type 2 diabetes. BMJ open, 3(11), e003384.
‘I’m not a druggie, I’m just a diabetic’: a qualitative study of stigma from the perspective of adults with type 1 diabetes
Takeaways
Interviews with people with type 1 diabetes showed that they believe their condition is stigmatized and that this may result from their association with people with type 2 diabetes. These interviews highlighted themes related to:
- How stigma is characterized: blame, negative social judgment, exclusion, and discrimination
- Sources: media, healthcare professionals, friends, family, and school teachers
- Consequences: impacts relationships, social identity, self-management of their diabetes, and emotional well-being, and leads people to hide their diagnosis
The researchers believe more studies should be conducted to identify ways to address stigma. They also acknowledge that adults with type 1 sometimes cause stigma for people with type 2 diabetes.
Browne, J. L., Ventura, A., Mosely, K., & Speight, J. (2014). ‘I’m not a druggie, I’m just a diabetic’: a qualitative study of stigma from the perspective of adults with type 1 diabetes. BMJ open, 4(7), e005625.
The Use of Language in Diabetes Care and Education
Takeaways
Language affects people’s perceptions of and behaviors toward people with diabetes. Experts recommend using language that is:
- Neutral, non-judgmental, and based on facts, actions, or physiology/biology
- Free from stigma
- Strengths-based, respectful, inclusive, and hopeful
- Fosters collaboration between patients and providers
- Person-centered
Dickinson, J. K., Guzman, S. J., Maryniuk, M. D., O’Brian, C. A., Kadohiro, J. K., Jackson, R. A., D’Hondt, N., Montgomery, B., Close, K. L., & Funnell, M. M. (2017). The Use of Language in Diabetes Care and Education. Diabetes care, 40(12), 1790–1799.
Our language matters: Improving communication with and about people with diabetes. A position statement by Diabetes Australia
Takeaways
The way people communicate can influence, persuade, and affect the way people view the world, and the current language used for and about diabetes has serious problems. Experts recommend:
- Make small changes: it’s easy and makes a big difference
- Change the conversation by starting with the language you use, calling out harmful language in others, and remembering that words have power
- Choose words that:
- show CARE (curious, accurate, respectful, and empathetic)
- remove BIAS (blame, irreverence, authority, stigma)
- Focus on more than just words: body language, tone, and attitude
J, S., T C, S., T, D., T, B., G, K., C, L., R, S., & G, J. (2021). Our language matters: Improving communication with and about people with diabetes. A position statement by Diabetes Australia. Diabetes research and clinical practice, 173, 108655.
Weight stigma and diabetes stigma in U.S. adults with type 2 diabetes: Associations with diabetes self-care behaviors and perceptions of health care
Takeaways
Weight stigma (internal and external), as well as diabetes self-stigma, can lead to a number of concerning outcomes including:
- Higher diabetes distress
- Less diabetes self management
- Lower self-efficacy
- Lower quality interactions with healthcare professionals
Puhl, R. M., Himmelstein, M. S., Hateley-Browne, J. L., & Speight, J. (2020). Weight stigma and diabetes stigma in U.S. adults with type 2 diabetes: Associations with diabetes self-care behaviors and perceptions of health care. Diabetes research and clinical practice, 168, 108387.
The stigma associated with gestational diabetes mellitus: A scoping review
Takeaways
This scoping review of the literature showed that women with gestational diabetes report stigma (both externally as overt discrimination or internally as guilt and blame), which may affect both their mental and physical health. Trends in the data highlight that when women with gestational diabetes do experience stigma, it can lead to:
- Avoiding screening
- Not following dietary recommendations
- Not reporting blood glucose readings
- Social isolation
- Poor mental well-being
Davidsen, E., Maindal, H. T., Rod, M. H., Olesen, K., Byrne, M., Damm, P., & Nielsen, K. K. (2022). The stigma associated with gestational diabetes mellitus: A scoping review. EClinicalMedicine, 52, 101614.