‘I call it the blame and shame disease’: a qualitative study about perceptions of social stigma surrounding type 2 diabetes

TLDR

Stigma has been extensively studied in conditions such as obesity and HIV/AIDS, yet diabetes has received limited attention, highlighting a need for research into its measurement and mitigation at individual and societal levels. This qualitative study aimed to explore the social experiences of Australian adults with type 2 diabetes mellitus, focusing on their perceptions and experiences of stigma through semistructured interviews conducted in non‑clinical settings across metropolitan and regional Victoria. Participants were recruited primarily via the state consumer organization for people with diabetes, with all adults aged 18 or older living in Victoria and diagnosed with T2DM eligible for inclusion. Among 25 participants (median age 61, median diabetes duration 5 years), 84 % reported perceiving stigma, with themes of blame, stereotyping, discrimination, and restricted opportunities arising from media, healthcare professionals, friends, family, and colleagues, leading to reluctance to disclose the condition and psychological distress, and participants noted that type 1 diabetes does not appear to experience similar stigma.

Abstract

While health-related stigma has been the subject of considerable research in other conditions (obesity and HIV/AIDS), it has not received substantial attention in diabetes. The aim of the current study was to explore the social experiences of Australian adults living with type 2 diabetes mellitus (T2DM), with a particular focus on the perception and experience of diabetes-related stigma.A qualitative study using semistructured interviews, which were audio recorded, transcribed and subject to thematic analysis.This study was conducted in non-clinical settings in metropolitan and regional areas in the Australian state of Victoria. Participants were recruited primarily through the state consumer organisation representing people with diabetes.All adults aged ≥18 years with T2DM living in Victoria were eligible to take part. Twenty-five adults with T2DM participated (12 women; median age 61 years; median diabetes duration 5 years).A total of 21 (84%) participants indicated that they believed T2DM was stigmatised, or reported evidence of stigmatisation. Specific themes about the experience of stigma were feeling blamed by others for causing their own condition, being subject to negative stereotyping, being discriminated against or having restricted opportunities in life. Other themes focused on sources of stigma, which included the media, healthcare professionals, friends, family and colleagues. Themes relating to the consequences of this stigma were also evident, including participants' unwillingness to disclose their condition to others and psychological distress. Participants believed that people with type 1 diabetes do not experience similar stigmatisation.Our study found evidence of people with T2DM experiencing and perceiving diabetes-related social stigma. Further research is needed to explore ways to measure and minimise diabetes-related stigma at the individual and societal levels, and also to explore perceptions and experiences of stigma in people with type 1 diabetes.