Jessica L. Browne

Social Stigma in Diabetes

A comprehensive understanding of the social and psychological impact of diabetes mellitus is important for informing policy and practice. One potentially significant, yet under-researched, issue is the social stigma surrounding diabetes. This narrative review draws on literature about health-related stigma in diabetes and other chronic conditions in order to develop a framework for understanding diabetes-related stigma. Our review of the literature found that people who do not have diabetes assume that diabetes is not a stigmatized condition. In contrast, people with diabetes report that stigma is a significant concern to them, experienced across many life domains, e.g., in the workplace, in relationships. The experience of diabetes-related stigma has a significant negative impact on many aspects of psychological well-being and may also result in sub-optimal clinical outcomes for people with diabetes. We propose a framework that highlights the causes (attitudes of blame, feelings of fear and disgust, and the felt need to enforce social norms and avoid disease), experiences (being judged, rejected, and discriminated against), and consequences (e.g., distress, poorer psychological well-being, and sub-optimal self-care) of diabetes-related stigma and also identifies potential mitigating strategies to reduce diabetes-related stigma and/or enhance coping and resilience amongst people with diabetes. The systematic investigation of the experiences, causes, and consequences of diabetes-related stigma is an urgent research priority.

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

Objectives While 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. Design A qualitative study using semistructured interviews, which were audio recorded, transcribed and subject to thematic analysis. Setting This 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. Participants All 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). Results A 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. Conclusions Our 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.

Diabetes MILES-Australia (management and impact for long-term empowerment and success): methods and sample characteristics of a national survey of the psychological aspects of living with type 1 or type 2 diabetes in Australian adults

BackgroundSuccessful management of diabetes requires attention to the behavioural, psychological and social aspects of this progressive condition. The Diabetes MILES (Management and Impact for Long-term Empowerment and Success) Study is an international collaborative. Diabetes MILES--Australia, the first Diabetes MILES initiative to be undertaken, was a national survey of adults living with type 1 or type 2 diabetes in Australia. The aim of this study was to gather data that will provide insights into how Australians manage their diabetes, the support they receive and the impact of diabetes on their lives, as well as to use the data to validate new diabetes outcome measures.Methods/designThe survey was designed to include a core set of self-report measures, as well as modules specific to diabetes type or management regimens. Other measures or items were included in only half of the surveys. Cognitive debriefing interviews with 20 participants ensured the survey content was relevant and easily understood. In July 2011, the survey was posted to 15,000 adults (aged 18-70 years) with type 1 or type 2 diabetes selected randomly from the National Diabetes Services Scheme (NDSS) database. An online version of the survey was advertised nationally. A total of 3,338 eligible Australians took part; most (70.4%) completed the postal survey. Respondents of both diabetes types and genders, and of all ages, were adequately represented in both the postal and online survey sub-samples. More people with type 2 diabetes than type 1 diabetes took part in Diabetes MILES--Australia (58.8% versus 41.2%). Most respondents spoke English as their main language, were married/in a de facto relationship, had at least a high school education, were occupied in paid work, had an annual household income >

‘I'm not a druggie, I'm just a diabetic’: a qualitative study of stigma from the perspective of adults with type 1 diabetes

AUS40,000, and lived in metropolitan areas.DiscussionA potential limitation of the study is the under-representation of respondents from culturally and linguistically diverse backgrounds (including Aboriginal and Torres Strait Islander origin). Diabetes MILES--Australia represents a major achievement in the study of diabetes in Australia, where for the first time, the focus is on psychosocial and behavioural aspects of this condition at a national level.

The needs, concerns, and characteristics of younger Australian adults with Type 2 diabetes.

Objectives While health-related stigma has been the subject of considerable research in other conditions (eg, HIV/AIDS, obesity), it has not received substantial attention in diabetes. Our aim was to explore perceptions and experiences of diabetes-related stigma from the perspective of adults with type 1 diabetes mellitus (T1DM). Design A qualitative study using semistructured interviews, which were audio recorded, transcribed and subject to thematic analysis. Setting All interviews were conducted in non-clinical settings in metropolitan areas of Victoria, Australia. Participants Adults aged ≥18 years with T1DM living in Victoria were eligible to take part. Participants were recruited primarily through the state consumer organisation representing people with diabetes. A total of 27 adults with T1DM took part: 15 (56%) were women; median IQR age was 42 (23) years and diabetes duration was 15 (20) years). Results Australian adults with T1DM perceive and experience T1DM-specific stigma as well as stigma-by-association with type 2 diabetes. Such stigma is characterised by blame, negative social judgement, stereotyping, exclusion, rejection and discrimination. Participants identified the media, family and friends, healthcare professionals and school teachers as sources of stigma. The negative consequences of this stigma span numerous life domains, including impact on relationships and social identity, emotional well-being and behavioural management of T1DM. This stigma also led to reluctance to disclose the condition in various environments. Adults with T1DM can be both the target and the source of diabetes-related stigma. Conclusions Stigmatisation is part of the social experience of living with T1DM for Australian adults. Strategies and interventions to address and mitigate this diabetes-related stigma need to be developed and evaluated.

Depression, anxiety and self-care behaviours of young adults with Type 2 diabetes: results from the International Diabetes Management and Impact for Long-term Empowerment and Success (MILES) Study

The mean age of onset of Type 2 diabetes mellitus is decreasing in Australia and internationally. We conducted an internet‐based survey to improve our understanding of the emotional well‐being and unmet needs of younger adults with Type 2 diabetes, and to inform service provision for this group.

Assessing the impact of diabetes on the quality of life of older adults living in a care home: validation of the ADDQoL senior

Young adults with Type 2 diabetes have higher physical morbidity and mortality than other diabetes sub‐groups, but differences in psychosocial outcomes have not yet been investigated. We sought to compare depression and anxiety symptoms and self‐care behaviours of young adults with Type 2 diabetes with two matched control groups.

Severely obese people with diabetes experience impaired emotional well-being associated with socioeconomic disadvantage: Results from diabetes MILES – Australia

Diabet. Med. 30, 74–80 (2013)

Diabetes MILES – The Netherlands: rationale, design and sample characteristics of a national survey examining the psychosocial aspects of living with diabetes in Dutch adults

AIM To examine the emotional well-being of severely obese Australians with type 2 diabetes, along with markers of social and economic disadvantage, using the Diabetes MILES - Australia dataset. METHODS Diabetes MILES - Australia was a national survey of 3338 adults with diabetes that focused on psychosocial issues; 1795 had type 2 diabetes and reported BMI. We extracted data regarding depression (PHQ-9), anxiety (GAD-7), obesity- and diabetes-related comorbidities, and demographics. The severely obese group (SOG) (BMI ≥ 35; median BMI=41.6) constituted 530 (30%) of the type 2 diabetes respondents and was matched with 530 controls (CG) (BMI<35; median BMI=28.2). Within- and between-group trends were examined. RESULTS The SOG had higher depression scores (median (IQR) 6.0 (3-12)) than CG (5.0 (2-10)); p<0.001, and were more likely to report moderate-severe depressive symptoms (37% versus 27%; p<0.001). The groups did not differ on anxiety. The SOG, compared with the CG, were more likely to live alone (21% versus 17%), receive a disability pension (21% versus 15%), earn ≤

Using the theory of planned behaviour and implementation intentions to predict and facilitate upward family communication about mammography

40.000/year (51% versus 41%; all p<0.05), and were less likely to be employed (46% versus 53%), university or higher educated (17% versus 26%), or have health insurance (50% versus 60%; all p ≤ 0.01). Moderate-severe depression was positively associated with cumulative stressors of severe obesity, socioeconomic disadvantage, and obesity- and diabetes-related comorbidity. CONCLUSIONS Severely obese people living with type 2 diabetes have cumulative stressors related to health, disability, demographic and socioeconomic factors, and impaired emotional well-being.