Stigma is a negative social judgment, which sets an individual or group apart. It can lead to perceived or experienced exclusion, rejection, blame, stereotyping, and/or status loss.
We conducted a literature review. We found that people who do not have diabetes assume that diabetes is not a stigmatised condition. In contrast, people with diabetes report that stigma is a significant concern to them. However, there were no studies where diabetes was the main focus of the research.
The second step of our program was to explore the issue in two qualitative studies, interviewing adults with T1D and adults with T2D. They told us they felt there was a stigma about their condition, in the form of negative social judgments and being treated differently. For those with T1D, there was a greater sense of status loss, while those with T2D felt blamed, and tended to self-blame and shame themselves, for developing their condition. These studies were highly influential and have triggered considerable health, social and general media interest, e.g. The Washington Post.
Using this interview data, we were able to develop two measures of diabetes stigma for adults with T1D and T2D, which have now been validated: The Diabetes Stigma Assessment Scale (DSAS-1 and DSAS-2). These scales are enabling research, for the first time, to quantify the impact and extent of the problem of diabetes-related stigma. To date, they have been used in Australia, and have also been culturally and linguistically adapted / translated by researchers for use in other countries, e.g. Denmark, Singapore, UK (English), USA (Arabic, English, Spanish). The scales are also being used in clinical practice.
If you would like to use the DSAS-1 or DSAS-2 in your research or clinical practice, email: email@example.com.
The focus of our research program is now to improve our understanding of the impact of diabetes stigma on emotional well-being, self-care and diabetes outcomes. We have recently published on the relationship between stigma and insulin appraisals among adults with T2D. We are also interested in the development, evaluation and implementation of interventions and strategies to reduce diabetes stigma. We have worked closely with Diabetes Victoria since throughout this research program to ensure its public awareness campaigns do not contribute to social stigma.
We have received funding from: Diabetes Australia Research Program General Grant: 2014.
We also acknowledge our collaborators: Dr Jessica Browne and Dr Adriana Ventura (both formerly ACBRD) and Dr Kylie Mosely (formerly Australian Catholic University).
Click on the hyperlinks above for the key ACBRD publications
Key papers by other researchers in this field include:
Nicolucci A, Kovacs Burns K, Holt RIG, et al, DAWN2 Study Group. Diabetes Attitudes, Wishes and Needs second study (DAWN2): cross-national benchmarking of diabetes-related psychosocial outcomes for people with diabetes. Diabet Med 2013; 30: 767–777
Link BG, Phelan JC. Conceptualizing stigma. Annu Rev Sociol 2001; 27: 363–85
Weiss MG, Ramakrishna J, Somma D. Health-related stigma: rethinking concepts and interventions. Psychol Health Med 2006; 11: 277–87