From diatribe.org
Key takeaways
- People with diabetes revealed how conversations around diabetes-related complications made them feel in a diaTribe and dQ&A study presented at ADA.
- Participants reported that kidney and eye complications as well as amputations were the complications that caused the most fear.
- Those surveyed also stressed that these discussions could be improved if healthcare professionals implemented better communication, such as avoiding fear-based messaging.
At the 2024 ADA conference in Orlando, Florida, diaTribe and market research firm dQ&A presented a poster detailing a study that looked at the types of conversations that people with diabetes and their healthcare team are having around diabetes-related complications.
The goal was to understand what these conversations looked like in the clinic, including how they made people with diabetes feel – and how to improve them.
In 2023, 42 people with diabetes were recruited to participate in the study. Participants were split into three groups: 21% were people with type 1, 38% were people with type 2 diabetes using insulin, and 41% were people with type 2 diabetes not using insulin.
Each of the groups took part in a five-day online discussion board where they answered survey questions with written and video responses and commented on each other’s answers.
What were the study results?
Following the study, researchers discovered that how these conversations made people with diabetes feel depended on several factors.
Three types of diabetes-related complications stood out as particularly scary for many people with diabetes: kidney complications, eye complications, and limb amputations. While much of this fear was attributed to the fear of losing independence or normalcy, these complications were also associated with extremely negative interactions with a healthcare provider.
Participants reported that healthcare teams sometimes used fear-based approaches to motivate them to change their behaviours, such as cautioning them about the potential for blindness, dialysis, and amputation if they weren’t able to improve their diabetes management.
In addition, healthcare professionals often used language depicting “loss.” For example, they mentioned the risk of “losing eyesight” or “losing a limb,” which led to emotional distress.
Other language choices, such as “kidney failure,” made participants feel as though it was their fault or that they were a personal failure. These interactions often left participants feeling frustrated, hurt, angry, depressed, sad, and intimidated, not empowered.
Why is this study important?
The results showed that some healthcare professionals are allowing stigmatizing and fear-based language and messaging to seep into their conversations with people with diabetes.
This is a real problem. We know that while diabetes-related complications can be very frightening, the conversations that people have with their healthcare team shouldn’t leave them feeling hopeless. diaTribe’s complications resources highlight many of the actionable steps that people with diabetes can take to lower their risk and even prevent future complications.
This research makes a case for improving interactions with healthcare teams. In response to the survey, participants shared these suggestions to improve their conversations with providers:
- Creating a collaborative and empathetic environment that gives equal weight to the lived experience of each person with diabetes.
- Prioritizing respect, education, and personalization when it comes to discussing diabetes-related complications. This means meeting people with diabetes where they are and providing as much information as possible in a compassionate and respectful way.
- Avoiding the use of fear-based imagery and messaging.
Rather, healthcare providers should empower people with easy-to-understand and actionable steps and use language that is neutral, non-judgmental, and based on facts, actions, or biology.
Even though experts have called for a shift toward language that is person-centred, respectful, inclusive, and strength-based, there is a lack of clear guidance on how to address specific topics in diabetes care such as complications.
We hope this research begins to shine a light on this issue and encourages healthcare professionals to understand how to best talk about a topic like complications that can be confusing and frightening for many people with diabetes.
These recommendations continue to build on the work addressing diabetes stigma such as the Pledge to End Diabetes Stigma, and diaTribe’s dStigmatize program.
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