“Are you sure you’re going to have another one of those?”

ACBRD and colleagues in Sydney publish paper on perceptions of social control and social support relating to the self-management of type 2 diabetes

by Dr Adriana Ventura

Family and partners of those with type 2 diabetes (T2D) are often drawn into the self-management process. These close relationships can have both positive and negative impacts on the person’s self-management. Less is known about the influence of the wider social network (e.g. friends, work colleagues). Our aim was to explore the perceived impact of the immediate and wider social network on a person’s self-management of T2D.

A total of 25 adults with T2D were interviewed about the ‘social experience’ of living with T2D.  We used two frameworks for understanding the ways in which a social network can influence coping and behaviours: a) the health-related social control model (i.e. attempts to correct or improve self-management) and b) social support model (i.e. the provision of encouragement and positive feedback). Four main themes were identified, including two themes that were established a priori (i.e. social control and social support), and two themes that emerged from the data (i.e. non-involvement and unintentional undermining).

Perhaps surprisingly, social control wasn’t always perceived negatively, with some people feeling appreciative and accepting of the ‘controlling’ behaviour exerted by those in their social network. Others, however, felt that the controlling behaviour was intrusive and critical. Overall, most participant felt that their social network offered support in the form of practical assistance and/or emotional validation. ‘Non-involvement’ emerged as a new theme, and was the most prevalent overall.  While some preferred that their social network were not involved in their diabetes management, others perceived their diabetes to be unimportant to others and wished for more input. The second and least frequently occurring theme to emerge from the data was ‘unintentional undermining’. This referred to participants’ perceiving thoughtless but insensitive behaviours/remarks from the social network.

Although family members have the most significant influence on T2D management, this study shows that friends and work colleagues also play a role. Therefore, increasing awareness of diabetes self-management is important across all relevant social networks.

Newton-John TRO, Ventura AD, Mosely K, Browne JL, Speight J. ‘Are you sure you’re going to have another one of those?’: A qualitative analysis of the social control and social support models in type 2 diabetes. Journal of Health Psychology. 2017; 22(4), 1819-1829.

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 info@acbrd.org.au 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.