We recently asked 142 members of the dQ&A US Patient Panel to share their experiences with stigma in diabetes. The results showed a lack of support from healthcare providers that impacts patient-provider relationships and patient care. Broader social stigma poses additional challenges in day-to-day diabetes management.
When asked about the relationships with their healthcare providers, over half of respondents reported that they have a good relationship with their primary care provider and about 2 in 5 respondents feel the same about their diabetes educator (40%). When asked about their diabetes specialist or endocrinologist, less than one-third (31%) of Type 2 respondents report that they have a good relationship with their provider, compared to 53% of Type 1 respondents. About two-thirds of Type 1 respondents feel that their healthcare team is on their side when it comes to diabetes (67%) while just 39% of Type 2 respondents feel the same. Among Type 1 respondents, 44% report their healthcare team does not blame them when something goes wrong with their blood glucose or diabetes care, compared to 35% of Type 2 respondents. Nearly half of Type 1 respondents (49%) report that their healthcare teams do not blame them for their weight, compared to just 29% of Type 2 respondents.
Overall, people with diabetes report feeling general blame for having diabetes from their healthcare providers. Over one quarter of respondents feel that a doctor, nurse, or other healthcare professional has blamed them for having diabetes (26%). The impact of this blame is clear: of respondents who felt blamed by a HCP for having diabetes, over 2 in 5 have decided against seeing their healthcare provider because of stigma (45%).
We asked respondents to share some of the words and actions that resulted in feelings of blame in conversations with providers:
“One nurse once commented about how I couldn’t just work out to keep fit. I felt disgusted with myself.” – Respondent with Type 2 diabetes
“My diabetes doctor mentioned that I should not be eating ice cream, which I don’t even do!” – Respondent with Type 1 diabetes
“I recently changed providers because I felt that my provider’s office made me feel that I am to blame for my weight and blood glucose numbers. I left their practice! My new provider makes me feel much better.” – Respondent with Type 2 diabetes
“When my blood sugar rises, they ask me accusatory questions about food and medication.” – Respondent with Type 2 diabetes
Healthcare providers are not the only source of shame and diabetes stigma. Respondents also reported delaying diabetes care in social settings out of fear of the reactions from others around them. About 2 in 5 respondents with type 1 diabetes and nearly one third of respondents with intensively managed type 2 diabetes have delayed an insulin injection or bolus because they were afraid of being judged by the people around them. Similarly, a third of Type 1 respondents and nearly a quarter of Type 2 respondents decided not to wear a diabetes device, such as a continuous glucose monitor (CGM) or pump, because they were afraid of being judged by the people around them. Nineteen percent of respondents felt that the social stigma surrounding diabetes negatively impacts their mental well-being.
These results indicate that respondents feel blamed by their healthcare providers and judged by those around them, which can impact the quality of their life. These experiences underscore the need to change the narrative of shame and stigma in diabetes. By encouraging and supporting people with diabetes, there could be fewer skipped injections or boluses, which are imperative to maintaining glucose levels within target ranges. Compassionate care from healthcare providers and empathy from friends and family can lead to better diabetes management and improved quality of life, thereby reducing poor health outcomes.
We offer our sincere thanks to the dQ&A US Patient Panel for sharing their experiences with us.
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