Annual Meeting of the Swiss Society of Endocrinology and Diabetes Experiences of Stigma in People living with Diabetes Mellitus in Switzerland Bartelsen-Raemy, Annabelle / Gredig, Daniel School of Social Work, Universit y of Applied Science and Art s Nort hwest ern Swit zerland, CH-Olt en Background and Purpose Method Results Conclusion and Implications References Contact Despite the prevailing public perception that diabetes mellitus is no stigmatized condition, there is now scientific evidence for stigma from studies in Australia (1,2) and Hong Kong (3). A study on discrimination in the workplace and work-related insurances in Switzerland provides further evidence that stigma and discrimination are a reality for many living with diabetes (4). However, there have been no comprehensive, in-depth studies of stigma and its impact on people living with diabetes. Against this background, the present study aimed to establish whether people living with diabetes in Switzerland experience stigma and discrimination (life-time prevalence) and, if so, in what contexts and to what extent. «Stigma» means a process starting with «labelling» (attaching a label to a certain condition: here diabetes) and leading to stereotyping (associating a label with negative attributes), to the construction of separations («us» v. «them»), and finally to status loss and discrimination. (5) In this study, the term «experienced stigma» denotes unjustified unequal treatment, disadvantage or exclusion experienced by diabetics due to diabetes, that is, diabetes-related discrimination. «Perceived Stigma» means the perception of stereotypes applied to the person living with diabetes by others. To generate data on the frequency and distribution of stigma experiences, we used an anonymous paper-and-pencil self-administered questionnaire (SAQ).This SAQ drew on a qualitative elicitation study which had identified a) the contexts in which respondents had ever experienced stigma, and b) the stigma they had ever perceived. Departing from these findings, we constructed two indices to capture the contexts of discrimination and the perceived stigma through self-reports by people living with diabetes. We analyzed the data using descriptive statistics and standard regressions. The SAQ was distributed to the readers of the “ d-journal” and “ d-journal romand” in order to generate a large and diverse convenience sample. People living with diabetes in Switzerland report experiences of a large range of unjustified unequal treatment and exclusion, that is, discrimination. They report their perceptions of negative stereotyping insinuating their inferiority to others as a result of diabetes. The findings suggest that interventions should be aimed at identifying and designing educational and public awareness strategies to reduce discrimination against, and correct stereotypes about, people living with diabetes. Experienced Stigma (life-time prevalence) 31.5% of respondents did not report any diabetes-related discrimination; 68.5% reported experienced stigma in one or more (median=3) of the following contexts: Perceived Stigma 84.4% of respondents reported perceptions of stereotyping (median=6). Poster 27 The respondents The sample included 3347 people living with diabetes, aged between 16 and 96 years, in diverse socioeconomic statuses and living conditions. Characteristics N % Diabetes Type Type 1 1352 42. 3 Type 2 1841 57. 7 Gender Women 1479 45. 2 Men 1791 54. 8 Linguistic region German-speaking region 2487 74. 3 French-speaking region 860 25. 7 Civil status Single 518 16. 0 Married 1924 59. 4 Registered partnership 54 1. 7 Divorced, separated, widowed 743 22. 9 Nationality Swi ss 3128 95. 3 Other 154 4. 7 1. Schabert J, Browne JL, Mosely K, Speight J. Social Stigma in Diabetes. Patient 2013;6:1-10. 2. Browne JL, Ventura A, Mosely K, Speight J. I call it the blame and the shame disease: a qualitative study about perceptions of social stigma surrounding type 2 diabetes. BMJ Open. 2013;3:1-10. 3. Tak-Ying Shiu A, Yee-Mei Kwan JJ, Yee-Man Wong R. Social stigma as barrier to diabetes self-management: implications for multi-level interventions. Journal of Clinical Nursing. 2003;12:149-50. 4. Nebiker-Pedrotti PM, Keller U, Iselin H-U, Ruiz J, Pärli K, Caplazi A. Perceived discrimination against diabetics in the work place and in work-related insurances in Switzerland. Swiss Medical Weekly. 2009;139(7-8):103-9. 5. Link BG, Phelan JC. Conceptualizing stigma. Annual Review of Sociology. 2001;27:363-85. Annabelle Bartelsen-Raemy: annabelle.raemy@fhnw.ch T 062 957 21 19 Experiences of unjustified unequal treatment (N=3347) 1 N + n° %* Leisure activities and social contacts Unj ustified unequal treatment by friends and acquaintances 3139 379 12. 1 Having to constantly justify oneself when eating out with friends 3144 767 24. 4 Prevented from practicing one's preferred sport 2453 385 15. 7 Denied access to bars, clubs, restaurants, etc. 2886 32 1. 1 School Exclusion from school trips and excursions 1430 103 7. 2 Workplace Forsaking a career goal against one's will 1956 221 11. 3 Denied access to one's envisaged professional training 1851 161 8. 7 Rejected as a job applicant 2090 167 8. 0 Removed from an executive position 1773 67 3. 8 Removed from an executive position due to hypoglycemia 1798 41 2. 3 Recommended to have particular working hours 2476 91 3. 7 Relieved of interesting professional duties and responsibilities 2492 106 4. 3 Declined promotion 2463 87 3. 5 Work colleagues showing fear and restraint 2584 369 14. 3 Work colleagues interfering with eating habits 2602 482 18. 5 Prompted to give notice 2460 81 3. 3 Termination of employment 2481 65 2. 6 Termination of employment and advised to apply for incapacity benefit 2481 74 3. 0 Prompted to seek early retirement 2478 118 4. 8 Military Service Declared unfit for military service at recruitment 753 252 33. 5 Declared unfit for civil defense service at recruitment 800 106 13. 3 Discharged from the military 819 197 24. 1 Required to pay military service exemption tax despite willingness to do military service 885 272 30. 7 Required to pay military service exemption tax despite willingness to do civil defense service 911 210 23. 1 Mobility Special treatment at airport security checks 2488 578 23. 2 Required to provide a medical certificate to retain a driver's license 2456 327 13. 3 Tax Denied deduction of medical expenses by tax authorities 2865 1090 38. 0 Insurance Denied life insurance 1576 451 28. 6 Denied loss-of-income insurance 1529 190 12. 4 Denied per diem (daily benefits) insurance 1687 223 13. 2 Denied supplementary health insurance 1927 509 26. 4 Termination of supplementary health insurance 2472 70 2. 8 Pension fund imposed benefits provision 2216 258 11. 6 Perceived stigma (N=3347) 1 N + n° %* I have in the past felt that … … people think that people with diabetes are “ poor souls" 3234 1227 37. 9 … people think that people with diabetes deserve pity 3222 1216 37. 7 … people think that diabetes is something terrible 3206 1370 42. 7 … friends or acquaintances think that people with diabetes need special attention 3190 1119 35. 1 … people think that diabetics use their illness as a pretext to gain some kind of benefit 3208 402 12. 5 … people think that people with diabetes are simulating or feigning their illness 3219 360 11. 2 … people think that people with diabetes are often off-sick due to their illness 3184 641 20. 1 … people think that diabetes impairs the (work) performance of diabetics 3196 1289 40. 3 … people think that people with diabetes are unable to cope with a heavy workload 3180 1002 31. 5 … people think that people with diabetes damage their organization's/ company's image 3128 120 3. 8 … people think that people with diabetes are invalids 3180 357 11. 2 … people think that people with diabetes have a deficit 3160 721 22. 8 … people think that people with diabetes are disabled 3171 574 18. 1 … people think that people with diabetes are a risk factor 3167 1208 38. 1 … people think that diabetics and their health costs are a burden for the taxpayer 3188 903 28. 3 … people think that people with diabetes are “ rare birds" 3170 264 8. 3 … friends and acquaintances think that diabetics are not one of them 3185 124 3. 9 … people mistakenly believe that diabetics are j unkies 3157 475 15 … people give diabetics inj ecting insulin in public strange looks 3127 1726 55. 2 … people think that diabetics are worth less than non-sufferers 3172 333 10. 5 … people think that diabetics are lazy 3172 280 8. 8 … people think that diabetics are old and overweight 3191 1526 47. 8 … people think that diabetics are gluttons 3174 717 22. 5 … people think that diabetics are weak-willed 3189 544 17. 1 … people think that diabetics have themselves to blame for their illness 3192 1260 39. 5 … people with diabetes are perceived solely as diabetes sufferers 3172 875 27. 6 Experienced and perceived stigma were found to be highly correlated ( β=.54). Experienced stigma proved not to be related to diabetes type, gender, linguistic region, and the degree of employment. However, there was a significant correlation between the number of contexts in which respondents had experienced stigma and age ( β= -.38***) and lifespan with diabetes ( β= .34***). Perceived stigma proved not to be related to diabetes type, gender, linguistic region, degree of employment nor lifespan with diabetes. However, the number of stereotypes perceived turned out to be dependent on the age of the respondent ( β= -.32***). 1 Multiple answers; + Respondents who found themselves in this situation; ° Respondents who experienced unequal treatment; * Relative concernment - persons who found themselves in this situation and were already suffering from diabetes when experiencing this treatment.