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

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          Abstract

          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.

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          Most cited references22

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          Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward.

          Although stigma is considered a major barrier to effective responses to the HIV/AIDS epidemic, stigma reduction efforts are relegated to the bottom of AIDS programme priorities. The complexity of HIV/AIDS-related stigma is often cited as a primary reason for the limited response to this pervasive phenomenon. In this paper, we systematically review the scientific literature on HIV/AIDS-related stigma to document the current state of research, identify gaps in the available evidence and highlight promising strategies to address stigma. We focus on the following key challenges: defining, measuring and reducing HIV/AIDS-related stigma as well as assessing the impact of stigma on the effectiveness of HIV prevention and treatment programmes. Based on the literature, we conclude by offering a set of recommendations that may represent important next steps in a multifaceted response to stigma in the HIV/AIDS epidemic.
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            • Abstract: found
            • Article: not found

            Association of depression and diabetes complications: a meta-analysis.

            The objective of this study was to examine the strength and consistency of the relationship between depression and diabetes complications in studies of type 1 and type 2 adult patients with diabetes. MEDLINE and PsycINFO databases were searched for articles examining depression and diabetes complications in type 1 and type 2 diabetes samples published between 1975 and 1999. Meta-analytic procedures were used. Studies were reviewed for diabetes type, sample size, statistical tests, and measures of diabetes complications and depression. Significance values, weighted effect sizes r, 95% confidence intervals (CI), and tests of homogeneity of variance were calculated for the overall sample (k = 27) and for subsets of interest. A total of 27 studies (total combined N = 5374) met the inclusion criteria. A significant association was found between depression and complications of diabetes (p < .00001, z = 5.94). A moderate and significant weighted effect size (r = 0.25; 95% CI: 0.22-0.28) was calculated for all studies reporting sufficient data (k = 22). Depression was significantly associated with a variety of diabetes complications (diabetic retinopathy, nephropathy, neuropathy, macrovascular complications, and sexual dysfunction). Effect sizes were in the small to moderate range (r = 0.17 to 0.32). These findings demonstrate a significant and consistent association of diabetes complications and depressive symptoms. Prospective, longitudinal studies are needed to identify the pathways that mediate this association.
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              • Abstract: found
              • Article: not found

              Depression and diabetes: impact of depressive symptoms on adherence, function, and costs.

              Depression is common among patients with chronic medical illness. We explored the impact of depressive symptoms in primary care patients with diabetes on diabetes self-care, adherence to medication regimens, functioning, and health care costs. We administered a questionnaire to 367 patients with types 1 and 2 diabetes from 2 health maintenance organization primary care clinics to obtain data on demographics, depressive symptoms, diabetes knowledge, functioning, and diabetes self-care. On the basis of automated data, we measured medical comorbidity, health care costs, glycosylated hemoglobin (HbA(1c)) levels, and oral hypoglycemic prescription refills. Using depressive symptom severity tertiles (low, medium, or high), we performed regression analyses to determine the impact of depressive symptoms on adherence to diabetes self-care and oral hypoglycemic regimens, HbA(1c) levels, functional impairment, and health care costs. Compared with patients in the low-severity depression symptom tertile, those in the medium- and high-severity tertiles were significantly less adherent to dietary recommendations. Patients in the high-severity tertile were significantly distinct from those in the low-severity tertile by having a higher percentage of days in nonadherence to oral hypoglycemic regimens (15% vs 7%); poorer physical and mental functioning; greater probability of having any emergency department, primary care, specialty care, medical inpatient, and mental health costs; and among users of health care within categories, higher primary (51% higher), ambulatory (75% higher), and total health care costs (86% higher). Depressive symptom severity is associated with poorer diet and medication regimen adherence, functional impairment, and higher health care costs in primary care diabetic patients. Further studies testing the effectiveness and cost-effectiveness of enhanced models of care of diabetic patients with depression are needed. Arch Intern Med. 2000;160:3278-3285.
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                Author and article information

                Journal
                BMJ Open
                BMJ Open
                bmjopen
                bmjopen
                BMJ Open
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                2044-6055
                2013
                16 November 2013
                : 3
                : 11
                : e003384
                Affiliations
                [1 ]The Australian Centre for Behavioural Research in Diabetes, Diabetes Australia—Vic , Melbourne, Victoria, Australia
                [2 ]Centre for Mental Health and Wellbeing Research, School of Psychology, Deakin University , Burwood, Victoria, Australia
                [3 ]School of Psychology, Deakin University , Burwood, Victoria, Australia
                [4 ]School of Psychology, Australian Catholic University , Strathfield, New South Wales, Australia
                [5 ]AHP Research , Hornchurch, UK
                Author notes
                [Correspondence to ] Dr Jessica L Browne; jbrowne@ 123456acbrd.org.au
                Article
                bmjopen-2013-003384
                10.1136/bmjopen-2013-003384
                3840338
                24247325
                fe562abf-a9ff-4357-abe2-a8f08ba75ca7
                Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions

                This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 3.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/3.0/

                History
                : 11 June 2013
                : 17 October 2013
                : 18 October 2013
                Categories
                Diabetes and Endocrinology
                Research
                1506
                1843
                1712
                1722
                1724
                1725

                Medicine
                social medicine,public health
                Medicine
                social medicine, public health

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