Review: experiences of stigma associated with diabetes

Singled out

People with diabetes often experience stigma in association with the disease.  However, this is an under-researched area compared with stigma associated with other conditions.  Therefore this narrative review is particularly welcome.

The review encompasses stigma enacted by others, stigma that is perceived by people with diabetes, and internalized stigma or “self-stigma”.

Causes of stigma

Often, stigma arises in association with the belief that diabetes has been caused by the person’s behaviour.  It also arises from negative stereotyping, status loss and discrimination by others.

The main causes of self-stigma identified in the review were:

  • Feelings of blame, sometimes reinforced by health promotion activities
  • Fear associated with needle use and loss of control due to hypoglycaemia

Self-stigmatisation may also be driven by pressure to meet social norms regarding behaviour.

The review emphasises the significant role of self-stigmatisation in diabetes, concluding:

In general, people who do not have diabetes tend to perceive diabetes as a non-stigmatized condition.

Nevertheless, stigma is also caused by other people’s attitudes and behaviour.  Worryingly, one systematic review reported that health professionals sometimes have stigmatising attitudes towards obese and overweight patients. People with diabetes may experience stigma that is compounded by stigma against other conditions, particularly obesity.

A young woman refusing cakeExperiences of stigma

People with diabetes sometimes experience stigma in a range of  different ways, many of which are culturally dependent.  The specific experiences cited in the review are:

  • embarrassment or fear in association with injecting insulin
  • self-stigma, such as feelings of failure or guilt in type 2 diabetes on insulin
  • stigma around meals due to dietary needs
  • fear of discrimination at work
  • fear of hypoglycaemia.

Consequences of stigma

As well as its psychological impact, stigma can be a substantial barrier to self-care.  People experiencing health-related stigma report:

  • anxiety
  • depression
  • attempts to conceal the condition, and subsequent compromise of self-care
  • isolation from family and social groups
  • a “culture of surveillance” in which your behaviour is constantly being judged.

What can be done

The reviewers did not find any evidence on ways of reducing stigma.  However, they identify the following possible avenues for evaluation

  1. Earlier detection and better treatment of diabetes
  2. Education aimed at external sources of stigma
  3. Counseling and support activities to reduce self-stigma

Comments

  • Clearly this is a highly personal issue but this review goes a long way to identifying the types of stigma sometimes experienced by people with diabetes.
  • Health professionals should be aware of this research and how stigma might potentially affect their patients.
  • The review suggests that there is a link between stigma and effective self-care.  This suggests that health systems have a lot to gain by tackling stigma in diabetes.
  • The review does not address different populations or age groups.  This is a serious limitation.
  • The review included research on conditions other than diabetes
  • The search date was April 2011, so it’s likely that research will have been published since.  However, they repeated the diabetes-specific search in May 2012.
  • It’s not clear whether any systematic quality assessment was done on the studies that were included in this review.
  • Further research is warranted to understand more about these feelings and what can be done about them.

Reference:

Schabert J, Browne JL, Mosely K, Speight J. Social stigma in diabetes : a framework to understand a growing problem for an increasing epidemic. Patient. 2013;6(1):1-10. doi: 10.1007/s40271-012-0001-0.

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Badenoch

Badenoch
I am an information scientist with an interest in making knowledge from systematic research more accessible to people who need it. This means you. I've been attempting this in the area of Evidence-Based Health Care since 1995. So far the results have been mixed. For some reason we expected busy clinicians to search databases and appraise papers instead of seeing patients. We also expected publishers to make the research freely available to the people who paid for it.. Ha! Hence The National Elf service.

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