What’s the Relationship Between Diabetes Stigma and Tech? Well, It’s Complicated
People with type 1 and 2 diabetes report experiencing diabetes stigma regardless of which devices they use. But when we start looking at which groups report the most stigma, the results get interesting.
As more and more people with diabetes are able to access wearable medical technology, there is a question of whether these devices either add to or reduce diabetes stigma, which refers to the stereotypes, blame, judgment, or prejudice that people with diabetes unfairly experience. Wearable medical technology like continuous glucose monitors (CGM) and insulin pumps are often visible, meaning the devices are inadvertently making diabetes a more visible chronic condition than it once was. Because of this, people who use these devices may be singled out as different or “other.”
Researchers wanted to know if these technologies affect whether a person experiences stigma, or if stigma may be acting as a barrier to using CGMs and insulin pumps. As diaTribe’s Stigma program manager, I had the pleasure of presenting some research in this field at the American Diabetes Association’s 83rd Scientific Sessions in San Diego, California – and it turns out the relationship between stigma and device use is not as predictable as we thought.
Surveying diabetes stigma
Research came from an online survey conducted in August 2022 among 594 adults with type 1 diabetes and 947 adults with type 2 diabetes. In those with type 2, more than 60% of participants were on insulin treatment.
The survey asked participants 19 diabetes stigma-related questions. Most notably, the participants were asked questions included in the type 1 and type 2 versions of the Diabetes Stigma Assessment Scale (DSAS). These scales have been validated, meaning they have been rigorously studied to show their effectiveness in measuring a person’s experience of diabetes stigma.
The scales include questions separated into three categories. “Treated Differently” and “Blame and Judgment” are included in both scales, while the type 1 scale (DSAS-1) includes a section called “Identity Concerns” and the type 2 version (DSAS-2) has a section called “Self Stigma.” The higher the overall score – or a higher score in an individual category – the greater the experience of diabetes stigma.
Diabetes Stigma Survey Results
Our results showed that the answer to the question, “What is the relationship between diabetes stigma and diabetes technology?” might be more complex than we initially thought.
Here’s what we learned from the group of people with type 1 diabetes:
- Those who were not using any device (neither a CGM nor an insulin pump) had significantly higher DSAS-1 total scores on average than all other groups (those wearing a CGM, insulin pump, or both).
- Specifically, this group had higher “Treated Differently” and “Identity Concerns” subscores.
Here’s what we learned from the group of people with type 2 diabetes:
In those who were not treated with insulin, adults using a CGM had higher DSAS-2 total scores on average than those not wearing a CGM.
Specifically, this group had higher “Treated Differently” and “Blame and Judgment” subscores.
Those who were treated with insulin had average higher DSAS-2 scores than those who were not treated with insulin, which confirmed previous research on this topic. However, there were no significant differences in scores between the different device groups in those treated with insulin.
What the results tell us about diabetes stigma and wearable devices
So what does this all mean? It means that the relationship between stigma and device use is not as straightforward as we thought.
Originally, our research team suggested that people using CGMs and insulin pumps may experience more stigma because of the greater visibility of their diabetes. And while our results in people with type 2 diabetes not on insulin treatment support that original guess, in people with type 1 diabetes, the opposite was actually true.
In people with type 2, there is a chance that device (and thus diabetes) visibility may be associated with a person’s experience of diabetes stigma. However, that’s not the whole story.
In fact, based on our results from those with type 1 diabetes, we are also beginning to consider the idea that stigma might be impacted by judgments from others about what diabetes management “could” or “should” look like. For example, people may feel judged by others because they’re not using devices like CGMs and insulin pumps.
Overall, it’s clear that diabetes stigma remains a challenge for people with type 1 and type 2 diabetes. Research shows that roughly 4 in 5 people with diabetes report experiencing some form of diabetes stigma, and around 1 in 5 report experiences of discrimination. These experiences of exclusion, rejection, prejudice, and blame are important to acknowledge because diabetes stigma can impact mental and physical health, self-care, and self-esteem.
The more researchers and healthcare professionals can understand how stigma impacts people’s adoption or use of tools to manage their diabetes, the better they can try and anticipate when stigma may be influencing decisions regarding technology use.