Social Stigma in Diabetes

A Framework to Understand a Growing Problem for an Increasing Epidemic
  • Jasmin Schabert
  • Jessica L. Browne
  • Kylie Mosely
  • Jane Speight
Review Article
First Online:

Abstract

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.

Keywords

Blood Glucose Level Celiac Disease Social Stigma Obese People Negative Appraisal 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.
This is a preview of subscription content, log in to check access

Notes

Acknowledgments

Diabetes Australia – Vic and Deakin University provide operational funding for The Australian Centre for Behavioural Research in Diabetes, which enabled this review to be conducted. The authors’ work was independent of the funding sources. The authors have no conflicts of interest to declare.

Author Contributions

J. Speight and K. Mosely conceived the study. J. Speight, J. Browne, and J. Schabert developed the search strategy, and J. Schabert conducted the literature search and read and summarized relevant articles. J. Schabert, J. Browne, K. Mosely, and J. Speight were all involved in the synthesization of the literature and the development of the framework. J. Schabert developed the first draft of the manuscript, and J. Browne and K. Mosely wrote additional sections of the manuscript. J. Schabert, J. Browne, K. Mosely, and J. Speight reviewed and revised the manuscript in preparation for publication. All authors approved the final version. J. Speight, as senior author, takes overall responsibility for the content of this article.

References

  1. 1.
    World Health Organization. Diabetes: fact sheet 312. Geneva: WHO; 2011.Google Scholar
  2. 2.
    Zimmet P. Diabetes epidemiology as a tool to trigger diabetes research and care. Diabetologia. 1999;42(5):499–518.PubMedCrossRefGoogle Scholar
  3. 3.
    Anderson RJ, Freedland KE, Clouse RE, Lustman PJ. The prevalence of co-morbid depression in adults with diabetes. Diabetes Care. 2001;24(6):1069–78.PubMedCrossRefGoogle Scholar
  4. 4.
    Rubin RR, Peyrot M. Quality of life and diabetes. Diabetes Metab Res. 1999;15(3):205–218.Google Scholar
  5. 5.
    Bradley C, Speight J. Patient perceptions of diabetes and diabetes therapy: assessing quality of life. Diabetes Metab Res. 2002;18(3):S64–69.Google Scholar
  6. 6.
    Brown L, Macintyre K, Trujillo L. Interventions to reduce HIV/AIDS stigma: what have we learned? AIDS Educ Prev. 2003;15(1):49–69.Google Scholar
  7. 7.
    Mahajan AP, Sayles JN, Patel VA, Remien RH, Sawires SR, Ortiz DJ, et al. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS. 2008;22(Suppl. 2):S67–79.PubMedGoogle Scholar
  8. 8.
    Abadía-Barrero CE, Castro A. Experiences of stigma and access to HAART in children and adolescents living with HIV/AIDS in Brazil. Soc Sci Med. 2006;62(5):1219–28.PubMedCrossRefGoogle Scholar
  9. 9.
    Parker R, Aggleton P. HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Soc Sci Med. 2003;57(1):13–24.PubMedCrossRefGoogle Scholar
  10. 10.
    Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol. 2005;4(3):171–8.PubMedGoogle Scholar
  11. 11.
    MacLeod JS, Austin JK. Stigma in the lives of adolescents with epilepsy: a review of the literature. Epilepsy Behav. 2003;4(2):112–7.PubMedCrossRefGoogle Scholar
  12. 12.
    Whatley AD, Diiorio CK, Yeager K. Examining the relationships of depressive symptoms, stigma, social support and regimen-specific support on quality of life in adult patients with epilepsy. Health Educ Res. 2010;25(4):575–84.PubMedCrossRefGoogle Scholar
  13. 13.
    Puhl RM, Heuer CA. The stigma of obesity: a review and update. Obesity. 2009;17(5):941–64.PubMedCrossRefGoogle Scholar
  14. 14.
    Puhl RM, Moss-Racusin CA, Schwartz MB, Brownell KD. Weight stigmatization and bias reduction: perspectives of overweight and obese adults. Health Educ Res. 2008;23(2):347–58.PubMedCrossRefGoogle Scholar
  15. 15.
    Zettel-Watson L, Britton M. The impact of obesity on the social participation of older adults. J Gen Psychol. 2008;135(4):409–23.PubMedCrossRefGoogle Scholar
  16. 16.
    Tuomilehto J, Lindström J, Eriksson JG, Valle TT, Hämäläinen H, Ilanne-Parikka P, et al. Prevention of type 2 diabetes mellitus by changes in lifestyle among subjects with impaired glucose tolerance. New Engl J Med. 2001;344(18):1343–50.PubMedCrossRefGoogle Scholar
  17. 17.
    Diabetes Prevention Program Research Group. Reduction in the incidence of type 2 diabetes with lifestyle intervention or metformin. New Engl J Med. 2002;346(6):393–403.CrossRefGoogle Scholar
  18. 18.
    Jones EE, French RS. Social stigma: the psychology of marked relationships. New York: WH Freeman; 1984.Google Scholar
  19. 19.
    Major B, O’Brien LT. The social psychology of stigma. Annu Rev Psychol. 2005;56(1):393–421.PubMedCrossRefGoogle Scholar
  20. 20.
    Link BG, Phelan JC. Conceptualizing stigma. Annu Rev Sociol 2001;27:363–38.Google Scholar
  21. 21.
    Jacoby A. Felt versus enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission. Soc Sci Med. 1994;38(2):269–74.PubMedCrossRefGoogle Scholar
  22. 22.
    Link BG, Phelan JC. Stigma and its public health implications. Lancet. 2006;367(9509):528–9.PubMedCrossRefGoogle Scholar
  23. 23.
    Weiss MG, Ramakrishna J. Stigma interventions and research for international health. Lancet. 2006;367(9509):536–8.PubMedCrossRefGoogle Scholar
  24. 24.
    Maggio CA, Pi-Sunyer FX. Obesity and type 2 diabetes. Endocrin Metab Clin. 2003;32(4):805–22.CrossRefGoogle Scholar
  25. 25.
    Bashiri H, Keshavarz A, Madani H, Hooshmandi A, Bazargan-Hejazi S, Ahmadi A. Celiac disease in type-I diabetes mellitus: coexisting phenomenon. J Res Med Sci. 2011;16:401–6.Google Scholar
  26. 26.
    Van Brakel WH. Measuring health-related stigma: a literature review. Psychol Health Med. 2006;11(3):307–34.PubMedCrossRefGoogle Scholar
  27. 27.
    Hsu LKG, Yu MW, Chang H, Summergrad P, Tsang BYP, Chen H. Stigma of depression is more severe in Chinese Americans than Caucasian Americans. Psychiatry. 2008;71(3):210–8.Google Scholar
  28. 28.
    Fernandes PT, Salgado PCB, Noronha ALA, Barbosa FD, Souza EAP, Sander JW, et al. Prejudice towards chronic diseases: comparison among epilepsy, AIDS and diabetes. Seizure. 2007;16(4):320–3.PubMedCrossRefGoogle Scholar
  29. 29.
    Della LJ. Exploring diabetes beliefs in at-risk Appalachia. J Rural Health. 2011;27(1):3–12.PubMedCrossRefGoogle Scholar
  30. 30.
    Moutier C, Cornette M, Lehrmann J, Geppert C, Tsao C, DeBoard R, et al. When residents need health care: stigma of the patient role. Acad Psychiatr. 2009;33(6):431–41.CrossRefGoogle Scholar
  31. 31.
    Westbrook MT, Legge V, Pennay M. Attitudes towards disabilities in a multicultural society. Soc Sci Med. 1993;36(5):615–23.PubMedCrossRefGoogle Scholar
  32. 32.
    Brod M, Kongsø JH, Lessard S, Christensen TL. Psychological insulin resistance: patient beliefs and implications for diabetes management. Qual Life Res. 2009;18(1):23–32.PubMedCrossRefGoogle Scholar
  33. 33.
    Reid TS. Insulin for type 2 diabetes mellitus: separating the myths from the facts. Insulin. 2007;2(4):182–9.CrossRefGoogle Scholar
  34. 34.
    Tan AM, Muthusamy L, Ng CC, Phoon KY, Ow JH, Tan NC. Initiation of insulin for type 2 diabetes mellitus patients: what are the issues? A qualitative study. Singap Med J. 2011;52(11):801–9.Google Scholar
  35. 35.
    Wellard SJ, Rennie S, King R. Perceptions of people with type 2 diabetes about self-management and the efficacy of community based services. Contemp Nurse. 2008;29(2):218–26.PubMedCrossRefGoogle Scholar
  36. 36.
    Shiu ATY, Kwan JJYM, Wong RYM. Social stigma as a barrier to diabetes self-management: implications for multi-level interventions. J Clin Nurs. 2003;12(1):149–50.CrossRefGoogle Scholar
  37. 37.
    Broom D, Whittaker A. Controlling diabetes, controlling diabetics: moral language in the management of diabetes type 2. Soc Sci Med. 2004;58(11):2371–82.PubMedCrossRefGoogle Scholar
  38. 38.
    Sato E, Ohsawa I, Kataoka J, Miwa M, Tsukagoshi F, Sato J, et al. Socio-psychological problems of patients with late adolescent onset type 1 diabetes: analysis by qualitative research. Nagoya J Med Sci. 2003;66(1–2):21–9.PubMedGoogle Scholar
  39. 39.
    De-Graft Aikins A. Reframing applied disease stigma research: a multilevel analysis of diabetes stigma in Ghana. J Community Appl Soc. 2006;16(6):426–41.Google Scholar
  40. 40.
    Singh H, Cinnirella M, Bradley C. Support systems for and barriers to diabetes management in South Asians and Whites in the UK: qualitative study of patients’ perspectives. BMJ Open. 2012;2(6):e001459.Google Scholar
  41. 41.
    Boyes AD, Latner JD. Weight stigma in existing romantic relationships. J Sex Marital Ther. 2009;35(4):282–93.PubMedCrossRefGoogle Scholar
  42. 42.
    Chen EY, Brown M. Obesity stigma in sexual relationships. Obes Res. 2005;13(8):1393–7.PubMedCrossRefGoogle Scholar
  43. 43.
    Rothblum ED, Brand PA, Miller CT, Oetjen HA. The relationship between obesity, employment discrimination, and employment-related victimization. J Vocat Behav. 1990;37(3):251–66.CrossRefGoogle Scholar
  44. 44.
    Agerström J, Rooth DO. The role of automatic obesity stereotypes in real hiring discrimination. J Appl Psychol. 2011;96(4):790–805.PubMedCrossRefGoogle Scholar
  45. 45.
    Berg M, Honkasalo ML. Pregnancy and diabetes: a hermeneutic phenomenological study of women’s experiences. J Psychosom Obst Gyn. 2000;21(1):39–48.CrossRefGoogle Scholar
  46. 46.
    Evans MK, O’Brien B. Gestational diabetes: the meaning of an at-risk pregnancy. Qual Health Res. 2005;15(1):66–81.PubMedCrossRefGoogle Scholar
  47. 47.
    Weiler DM, Crist JD. Diabetes self-management in a Latino social environment. Diabetes Educator. 2009;35(2):285–92.Google Scholar
  48. 48.
    Butt G, Paterson BL, McGuinness LK. Living with the stigma of hepatitis C. Western J Nurs Res. 2008;30(2):204–21.CrossRefGoogle Scholar
  49. 49.
    Baker GA, Brooks J, Buck D, Jacoby A. The stigma of epilepsy: a European perspective. Epilepsia. 2000;41(1):98–104.PubMedCrossRefGoogle Scholar
  50. 50.
    Mulvaney SA, Mudasiru E, Schlundt DG, Baughman CL, Fleming M, VanderWoude A, et al. Self-management in type 2 diabetes: an adolescent perspective. Diabetes Educator 2008;34(4):674–82.Google Scholar
  51. 51.
    Thomas SL, Hyde J, Karunaratne A, Herbert D, Komesaroff PA. Being ‘fat’ in today’s world: a qualitative study of the lived experiences of people with obesity in Australia. Health Expect. 2008;11(4):321–30.PubMedCrossRefGoogle Scholar
  52. 52.
    Teixeira ME, Budd GM. Obesity stigma: a newly recognized barrier to comprehensive and effective type 2 diabetes management. J Am Acad Nurse Prac. 2010;22(10):527–33.CrossRefGoogle Scholar
  53. 53.
    Phelan JC, Link BG, Dovidio JF. Stigma and prejudice: one animal or two? Soc Sci Med. 2008;67(3):358–67.Google Scholar
  54. 54.
    Butt G. Stigma in the context of hepatitis C: concept analysis. J Adv Nurs. 2008;62(6):712–24.PubMedCrossRefGoogle Scholar
  55. 55.
    Browne J, Zimmet P, Speight J. Individual responsibility for reducing obesity: the unintended consequences of well intended messages. Med J Aust. 2011;195(7):386.PubMedCrossRefGoogle Scholar
  56. 56.
    Bandstra NF, Camfield CS, Camfield PR. Stigma of epilepsy. Can J Neurol Sci. 2008;35(4):436–40.Google Scholar
  57. 57.
    McNally RJ. Disgust has arrived. J Anxiety Disord. 2002;16(5):561–6.PubMedCrossRefGoogle Scholar
  58. 58.
    Dinitz S, Dynes RR, Clarke AC. Deviance: studies in the process of stigmatization and societal reaction. New York: Oxford University Press; 1969.Google Scholar
  59. 59.
    Vartanian LR. Disgust and perceived control in attitudes toward obese people. Int J Obes. 2010;34(8):1302–7.CrossRefGoogle Scholar
  60. 60.
    Puhl R, Brownell KD. Bias, discrimination, and obesity. Obes Res. 2001;9(12):788–805.PubMedCrossRefGoogle Scholar
  61. 61.
    Kurzban R, Leary MR. Evolutionary origins of stigmatization: the functions of social exclusion. Psychol Bull. 2001;127(2):187–208.PubMedCrossRefGoogle Scholar
  62. 62.
    Heijnders M, Van Der Meij S. The fight against stigma: an overview of stigma-reduction strategies and interventions. Psychol Health Med. 2006;11(3):353–63.PubMedCrossRefGoogle Scholar
  63. 63.
    Persky S, Eccleston CP. Impact of genetic causal information on medical students’ clinical encounters with an obese virtual patient: health promotion and social stigma. Ann Behav Med. 2010;41(3):363–72.CrossRefGoogle Scholar
  64. 64.
    Hamra M, Ross MW, Orrs M, D’Agostino A. Relationship between expressed HIV/AIDS-related stigma and HIV-beliefs/knowledge and behaviour in families of HIV infected children in Kenya. Trop Med Int Health. 2006;11(4):513–27.PubMedCrossRefGoogle Scholar
  65. 65.
    Pettigrew TF, Tropp LR. A meta-analytic test of intergroup contact theory. J Pers Soc Psychol. 2006;90(5):751–83.PubMedCrossRefGoogle Scholar
  66. 66.
    Weiss MG, Doongaji D, Siddhartha S, Wypij D, Pathare S, Bhatawdekar M, et al. The Explanatory Model Interview Catalogue (EMIC). Contribution to cross-cultural research methods from a study of leprosy and mental health. Brit J Psychiat 1992;160(6):819–30.Google Scholar
  67. 67.
    Van Brakel WH, Anderson AM, Mutatkar R, Bakirtzief Z, Nicholls PG, Raju M, et al. The Participation Scale: measuring a key concept in public health. Disabil Rehabil. 2006;28(4):193–203.PubMedCrossRefGoogle Scholar

Copyright information

© Springer International Publishing Switzerland 2013

Authors and Affiliations

  • Jasmin Schabert
    • 1
    • 2
  • Jessica L. Browne
    • 1
    • 2
  • Kylie Mosely
    • 3
  • Jane Speight
    • 1
    • 2
    • 4
  1. 1.The Australian Centre for Behavioural Research in DiabetesMelbourneAustralia
  2. 2.Centre for Mental Health and Wellbeing Research, School of PsychologyDeakin UniversityBurwoodAustralia
  3. 3.Australian Catholic UniversityStrathfieldAustralia
  4. 4.AHP ResearchHornchurchUK

Personalised recommendations