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

Abstract

ObjectivesWhile 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.DesignA qualitative study using semistructured interviews, which were audio recorded, transcribed and subject to thematic analysis.SettingThis 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.ParticipantsAll 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).ResultsA 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.ConclusionsOur 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.

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“…Stigma affects the lives of people living with diseases such as leprosy (Adhikari et al, 2014), tuberculosis (Juniarti & Evans, 2011), diabetes (Browne et al, 2013), mental illness (Beldie et al, 2012), HIV and, more recently, Ebola (Davtyan et al, 2014) and plays a significant role in these diseases. Some diseases are more stigmatizing than others and may be socially unacceptable.…”

Managing diabetes in people with dementia: a realist review

“…People with diabetes may also be stigmatised and blamed for their condition because of lifestyle choices and/or obesity. 144 Recent work by members of the team around community engagement and dementia-friendly health care has argued that without a foundation of awareness about what it is like to live with dementia, related initiatives will not succeed. A reliance, for example, on single initiatives such as dementia champions is insufficient.…”

“…144 Stigma associated with dementia has an impact on the person living with dementia and may lead to them having poorer access to care than people with similar comorbidities but without dementia. 39 Stigma is also felt by the family carer, for example through increased social isolation.…”

Clinician's Commentary on Figueiredo et al.

“…These sorts of feeling may be particularly true for those patients whose condition can be ascribed to behavioural factors (e.g., smoking, lack of exercise, poor diet) and who harbour feelings of self-blame. 15,16 It is important that these individuals' responsibility not be overemphasized but that SMS instead fosters working in partnership.…”