Measuring stigma associated with Type 1 Diabetes

A new paper from the ACBRD describes development of the DSAS-1 questionnaire. 

by Dr Adriana Ventura

The ACBRD recognises that stigma is perceived and experienced by people with diabetes, and that we need to be able to quantify this so that we can better understand stigma and its relationship with emotional well-being, self-care and clinical outcomes.

In 2014, the ACBRD conducted a qualitative study, interviewing 27 adults with type 1 diabetes (T1DM) about the ‘social experience’ of living with T1DM. We found that stigmatisation is part of the social experience of living with T1DM. That is, adults with T1DM were able to tell us about their perceptions (and experiences) of being negatively judged, stereotyped or blamed for having diabetes. The consequence of this stigma was feeling distressed and isolated, and in some circumstances, delaying or avoiding diabetes self-management tasks (e.g. checking glucose, injecting insulin in public). These personal accounts are really powerful but, until now, there has been no way of measuring the extent to which the wider population of adults with T1DM perceives and experiences diabetes-related stigma. This is due to a lack of validated questionnaires.

Thus, the Type 1 Diabetes Stigma Assessment Scale (DSAS-1) was conceived.

The DSAS-1 was rigorously developed by Dr Jessica Browne and colleagues, and involved input from adults with T1DM to not only test the items, but to ensure the words we used made sense and were relevant for people with T1DM.  A large sample of adults with T1DM (N=898) then completed the items in an online survey. Psychometric analyses were used to examine whether the individual items would combine into a ‘scale’. What resulted was a 19-item scale assessing three distinct but related factors: ‘Treated Differently’, ‘Blame and Judgement’ and ‘Identity Concerns’.

The DSAS-1 is a valid and reliable measure, with satisfactory psychometric properties. It is now available to researchers and clinicians to enable quantitative measurement of the extent and impact of the perceptions and experiences of T1DM stigma.

We have developed a similar scale for type 2 diabetes (the DSAS-2), which was published in Dec 2017, and you can read about it here.

If you would like to use the DSAS-1 or DSAS-2 in your research or clinical practice, please email to enquire about or access the latest version of the questionnaires and scoring guidance.

Browne J, Ventura A, Mosely K, Speight J. Measuring Type 1 diabetes stigma: development and validation of the Type 1 Diabetes Stigma Assessment Scale (DSAS-1). Diabetic Medicine, 2017; doi: 10.1111/dme.13507.

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