AIMS:We aimed to develop and validate a Japanese version of the type 1 diabetes (T1D) stigma assessment scale (DSAS-1 JP) to measure the stigma perceived and experienced by adults with T1D. METHODS:The DSAS-1 JP was created through forward and backward translations, cognitive debriefing with 10 participants, and extensive proofreading. Its reliability and validity were evaluated in 384 adults with T1D using confirmatory factor analysis, Cronbach's α for internal reliability, and Spearman's rank correlation for construct validity. RESULTS:The DSAS-1 JP was found to be acceptable by the experts and the target population. Confirmatory factor analysis verified the three-factor structure representing 'treated differently', 'blame and judgement', and 'identity concern', with Cronbach's α values of 0.86, 0.85, and 0.89, respectively. Overall, Cronbach's α for the DSAS-1 JP was 0.92. The model fit indices were robust (goodness-of-fit index=0.94, comparative fit index=0.94, root mean square error of approximation=0.068). Correlations of the DSAS-1 JP score with diabetes distress (r = 0.60, p < 0.001), self-esteem (r = -0.28, p < 0.001), and depressive symptoms (r = 0.34, p < 0.001) confirmed its constant validity. The test-retest reliability was strong at 0.77 (p < 0.0001). CONCLUSION:The DSAS-1 JP is a reliable and valid tool for assessing the extent of perceived and experienced stigma in Japanese adults with T1D.
Objectives To investigate the association between self-stigma evaluated using the Japanese version of the Self-Stigma Scale (SSS-J) and diabetic complications, such as diabetic retinopathy (DR) and diabetic kidney disease (DKD).Design Cross-sectional study.Setting One university hospital and one clinic in Fukuoka, Japan.Participants People (age ≥20 years) with type 2 diabetes receiving outpatient care, who were treated by diabetologists, and completed the SSS-J questionnaire (n=259).Primary and secondary outcome measures The primary outcome was the level of self-stigma assessed using the SSS-J. The presence of DR and DKD was evaluated as secondary outcomes.Results A positive correlation was found between self-stigma and glycated haemoglobin (HbA1c) levels (r=0.132, p=0.034). The mean SSS-J score was significantly higher in people with type 2 diabetes who had DR than in those without DR (p=0.006). There was no significant difference in the mean SSS-J scores of the patients with albuminuria (p=0.318) or a decreased kidney function (p=0.887). Additionally, the relative risk for the presence of DR, as assessed by quartiles of SSS-J scores and a logistic regression analysis, was significantly increased in the Q4 group with the highest SSS-J score after adjustment for sex, age and HbA1c (OR=3.91, 95% CI 1.49 to 10.3, p=0.006). The relative risk for the presence of albuminuria as a DKD significantly increased in the Q4 group immediately after adjustment for sex and age (OR=2.45, 95% CI 1.04 to 5.81, p=0.042). However, this association was attenuated and became non-significant after additional adjustment for HbA1c levels. In contrast, no significant association was observed between the SSS-J score quartiles and decreased kidney function.Conclusions The presence of DR was more strongly associated with self-stigma than DKD. Although the causality between self-stigma and the presence of DR could not be elucidated due to the cross-sectional nature of the study, the present study suggests that addressing self-stigma may aid in glycaemic management and the prevention of DR, emphasising the need for healthcare providers to recognise self-stigma as a barrier to optimal diabetes care.
Living with diabetes is challenging. From diagnosis, one has to deal with lifelong management of glycemia and other factors. Misunderstandings about diabetes persist. People with diabetes (PWD) are sometimes misperceived as having brought diabetes upon themself, being incapable of self-management, maintaining a healthy lifestyle, or appropriate dietary habits, among other negative attributes. As a result, PWD can face difficulties at school, at home, in the workplace, and in the community. PWD also face financial burden with medical costs, health insurance, and loans. There has been growing awareness of diabetes-related stigma, highlighting the prevalence and consequences of biased, one-sided, and inaccurate information. Stigma can negatively affect the self-esteem, self-confidence, and self-care of PWD, and adversely affect their clinical outcomes. Therefore, advocacy to reduce the burden is essential. The situation varies within and between countries. There are still countries with limited access to insulin, more powerful glucose-lowering, cardio- and reno-protective drugs for type 2 diabetes, glucose monitoring strips, let alone technologies including continuous glucose monitoring (CGM) and insulin pumps. As members of the Asia-Pacific region, we strive to improve the quality of life for PWD within our countries and to enhance the global advocacy movement to achieve sustainable health equity worldwide. Herein, we share information from some Asia-Pacific countries: Australia, China, Korea, Indonesia, and Japan, including some aspects of the advocacy movement in each country. Through mutual understanding and collaboration, we aim to strengthen advocacy efforts across the Asia-Pacific region and contribute to global initiatives that enhance health outcomes for PWD.
People with diabetes often encounter stigma (ie, negative social judgments, stereotypes, prejudice), which can adversely affect emotional, mental, and physical health; self-care, access to optimal health care; and social and professional opportunities. To accelerate an end to diabetes stigma and discrimination, an international multidisciplinary expert panel (n=51 members, from 18 countries) conducted rapid reviews and participated in a three-round Delphi survey process. We achieved consensus on 25 statements of evidence and 24 statements of recommendations. The consensus is that diabetes stigma is driven primarily by blame, perceptions of burden or sickness, invisibility, and fear or disgust. On average, four in five adults with diabetes experience diabetes stigma and one in five experience discrimination (ie, unfair and prejudicial treatment) due to diabetes, such as in health care, education, and employment. Diabetes stigma and discrimination are harmful, unacceptable, unethical, and counterproductive. Collective leadership is needed to proactively challenge, and bring an end to, diabetes stigma and discrimination. Consequently, we achieved unanimous consensus on a pledge to end diabetes stigma and discrimination.
In the past few years, diabetes-related stigma has rapidly gained attention around the world. Many studies, including our study, show that a diabetes population is globally impacted by disease-specific stigma across age, gender, educational levels, employment status, and race/ethnicity. However, it still remains unclear whether some of these socioeconomic factors are more influential in terms of the social vulnerability of the exposed individuals with type 2 diabetes. Understanding how diabetes-related stigma influences patients through these socioeconomic and racial/ethnic factors, and how these impacts vary according to different patient populations would help us gain a further understanding of diabetes-related stigma as a whole. Thus, most importantly, we should establish a comprehensive, coherent study design (e.g., cross-regional study, cross-national study), identify more vulnerable patient populations, and tackle diabetes-related stigma in collaborative efforts with patients, clinicians, researchers, academic societies, governments, and all involved parties around the globe.