Skip to main content

Breaking stigma within us: the role of people with type 1 diabetes in overcoming diabetes-related stigma

Abstract

This study explored the strategies to overcome type 1 diabetes-related stigma at the individual level in Iran. This paper is part of the findings of an action research study, which was designed in Iran in 2012 to plan and implement a program for overcoming diabetes-related stigma. Participants were 44 people with type 1 diabetes. Unstructured in-depth interviews, focus groups, email, short message service (SMS) and telephone interview was used to extract strategies to overcome the diabetes-related stigma. Due to the qualitative nature of the data in this phase of the action research, data were analyzed using inductive content analysis approach. Findings showed that in the viewpoint of people with diabetes, their behaviors and reactions are important factors in their resistance to diabetes-related stigma, reducing social stigma, and avoiding its harmful effects. They referred to the interconnected strategies as disease acceptance, accepting social stigma, reinforcing spirituality, enhancing self-esteem and self-confidence, effective self-care activities, and forming real and distant groups. Individual interventions are important steps to initiate overcoming diabetes-related stigma, and social activities will not be successful without them. They are much more economical and more practical than social level measures. These findings can help healthcare teams to integrate anti-stigma strategies in their routine care plan to reduce stigma as well as providing diabetes management.

This is a preview of subscription content, access via your institution.

References

  1. Tang TS, Gillard ML, Funnell MM, Nwankwo R, Parker E, Spurlock D, et al. Developing a new generation of ongoing: Diabetes self-management support interventions: a preliminary report. Diabetes Educ. 2005;31(1):91–7.

    Article  PubMed  Google Scholar 

  2. Paterson B. Myth of empowerment in chronic illness. J Adv Nurs. 2001;34(5):574–81.

    CAS  Article  PubMed  Google Scholar 

  3. Aujoulat I, Marcolongo R, Bonadiman L, Deccache A. Reconsidering patient empowerment in chronic illness: a critique of models of self-efficacy and bodily control. Soc Sci Med. 2008;66(5):1228–39. Epub 2007 Dec 21.

    Article  PubMed  Google Scholar 

  4. Naemiratch B, Manderson L. 'Normal, but…': living with type 2 diabetes in Bangkok, Thailand. Chronic Illn. 2008;4(3):188–98. doi:10.1177/1742395308090069.

    Article  PubMed  Google Scholar 

  5. Makgahlela, Mpsanyana Wilson (2010). The effect of stigma on HIV and AIDS tesing uptake among pregnant women in Limpopo province. Thesis (M.A.)(Clinical Psychology) --University of Limpopo. Available at: http://hdl.handle.net/10386/291

  6. Weiss MG, Ramakrishna J. Stigma interventions and research for international health. Lancet. 2006;11(9509):536–8.

    Article  Google Scholar 

  7. Miranda B. Leprosy stigma and disability. What has been done and what could be done: taking advantage of theory and practice (Personal communication). Available from www.innoviafoundation.org/images/report_lepstig.doc

  8. Gill G et al. Memories of the early years of insulin treatment in the UK. Practical Diabetes Int. 2003;20(3):103–7.

    Article  Google Scholar 

  9. Buchbinder MH, Detzer MJ, Welsch RL, Christiano AS, Patashnick JL, Rich M. Assessing adolescents with insulin-dependent diabetes mellitus: a multiple perspective pilot study using visual illness narratives and interviews. J Adolesc Health. 2005;36(1):71.e9–13.

    Article  Google Scholar 

  10. Cartwright E, Schow D, Herrera S, Lora Y, Mendez M, Mitchell D, et al. Using participatory research to build an effective type 2 diabetes intervention: the process of advocacy among female Hispanic farmworkers and their families in Southeast Idaho. Women Health. 2006;43(4):89–109.

    Article  PubMed  Google Scholar 

  11. Dwivedi (2008), A. Living on the outside: The impact of diabetes-related stigma. Available from: http://www.themedguru.com/articles/living_on_the_outside_the_impact_of_diabetes_related_stigma-86116061.html

  12. Kruger, D.F. and G.R. Spollett (2009), Addressing barriers to timely intensification of diabetes care: the relationship between clinical inertia and patient behaviour. Consultant, 49(Supplement): p. S20-25.

  13. Weiler DM, Crist JD. Diabetes self-management in a Latino social environment. Diabetes Educ. 2009;35(2):285–92. doi:10.1177/0145721708329545. Epub 2009 Feb 9.

    Article  PubMed  Google Scholar 

  14. Wu, H.L. (2010), An investigation of type 2 diabetes self-management in Taiwan. 2008, University of Nottingham. diabetes self- management in taiwan. The University of Nottingham, Retrieved from http://etheses.nottingham.ac.uk/756/

  15. Amini P. Study of problems in children and adolesence living with diabetes from their mothers’ perspective. Isfahan: Isfahan University of Medical Sciences; 2003.

    Google Scholar 

  16. Doosti irani M. lived experience of people with type 2 diabetes. Thesis for masster degree in nursing. Isfahan: Isfahan University of Medical Sciences; 2006.

  17. Abolhasani S, Babaie S, Eghbali M. Mothers experience about self care in children with diabetes. Isfahan: Isfahan University of Medical Sciences; 2008.

    Google Scholar 

  18. Abdoli S. The empowerment process in people with Diabetes. Dissertation for PhD degree in nursing. Tehran: Shahid Beheshti University of Medical Sciences; 2008.

    Google Scholar 

  19. Abdoli S Abazari, P, Mardanian L. Exploring diabetes type 1-related stigma. IJNMR. In press.

  20. Doosti MI, Abdoli S, Parvizy S, Seyed Fatemi N, amini M. living in the shadow and light; iranian yought responses to diabetes-related Stigma. European online journal of natural and social sciences. 2 (2). 2013

  21. Goenka N et al. Cultural barriers to diabetes care in South Asians: arranged marriage–arranged complications? Practical Diabetes Int. 2004;21(4):154–6.

    Article  Google Scholar 

  22. Kalra B, Kalra S, Sharma A. Social stigma and discrimination: a care crisis for young women with diabetes in India. Diabetes Voice. 2009;54(special issue):37–9.

    Google Scholar 

  23. Hopper S. Diabetes as a stigmatized condition: the case of low-income clinic patients in the United States. Soc Sci Med Med Anthropol. 1981;15B(1):11–9.

    CAS  PubMed  Google Scholar 

  24. A Call to Action on Diabetes, International Diabetes Federation, November 2010.

  25. Van der Meij, S. and M. Heijnders (2004), The fight against stigma: Stigma reduction strategies and interventions, in international stigma workshop. Soesterberg.

  26. Cross H, Heijnders M, Dalal A. Interventions for stigma reduction—part 2: practical applications. Disabil, CBR Incl Dev. 2012;22(3):71–80.

    Google Scholar 

  27. Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008;62:107–15.

    Article  PubMed  Google Scholar 

  28. Courtwright A, Turner AN. Tuberculosis and stigmatization: pathways and interventions. Public Health Rep. 2010;125 Suppl 4:34–42.

    PubMed Central  PubMed  Google Scholar 

  29. Royal Tropical Institute Report of the Research Workshop on Health-related Stigma and Discrimination. Paper presented at the Research Workshop on Health-related Stigma and Discrimination; Soesterberg. November 29-December 2, 2004.

  30. Helgeson VS, Novak SA. Illness centrality and well-being among male and female early adolescents with diabetes. J Pediatr Psychol. 2007;32(3):260–72.

    Article  PubMed  Google Scholar 

  31. Makoae LN, Greeff M, Phetlhu RD, Uys LR, Naidoo JR, Kohi TW, et al. Coping with HIV-related stigma in five African countries. J Assoc Nurses AIDS Care. 2008;19(2):137–46. doi:10.1016/j.jana.2007.11.004.

    PubMed Central  Article  PubMed  Google Scholar 

  32. Logie CH, James L, Tharao W, Loutfy MR. HIV, gender, race, sexual orientation, and sex work: a qualitative study of intersectional stigma experienced by HIV-positive women in Ontario, Canada. PLoS Med. 2011;8(11):e1001124. doi:10.1371/journal.pmed.1001124. Epub 2011 Nov 22.

    PubMed Central  Article  PubMed  Google Scholar 

  33. Chaudoir SR, Norton WE, Earnshaw VA, Moneyham L, Mugavero MJ, Hiers KM. Coping with HIV stigma: do proactive coping and spiritual peace buffer the effect of stigma on depression? AIDS Behav. 2012;16(8):2382–91. doi:10.1007/s10461-011-0039-3.

    Article  PubMed  Google Scholar 

  34. Muturi N, An S. HIV/AIDS stigma and religiosity among African American women. J Health Commun. 2010;15(4):388–401. doi:10.1080/10810731003753125.

    Article  PubMed  Google Scholar 

  35. Holy Quran. Chapter Al-Hujurat (049.011).

  36. Holy Quran. Chapter Al-Anfal (008.046)

  37. van Brakel W, Voorend C, Ebenso B, Cross H, Augustine V . Guidelines to reduce stigma : Guide 1 What is health-related stigma? London: International Federation of Anti-Leprosy Associations (ILEP): and: Amsterdam: Netherlands Leprosy Relief, 2011, 22 p, ill. Available at:http://www.ilep.org.uk/fileadmin/uploads/Documents/Guidelines_to_Reduce_Stigma/ILEP_stigma_guidelines_-_1_web__2_.pdf

  38. Schneider S, RJ I i, Nansel TR, Haynie DL, Sobel DO, Simons-Morton B. Assessment of an illness-specific dimension of self-esteem in youths with type 1 diabetes. J Pediatr Psychol. 2009;34(3):283–93. doi:10.1093/jpepsy/jsn078. Epub 2008 Jul 29.

    PubMed Central  Article  PubMed  Google Scholar 

  39. Mulvaney SA, Hood KK, Schlundt DG, Osborn CY, Johnson KB, Rothman RL, et al. Development and initial validation of the barriers to diabetes adherence measure for adolescents. Diabetes Res Clin Pract. 2011;94(1):77–83. doi:10.1016/j.diabres.2011.06.010. Epub 2011 Jul 7.

    PubMed Central  Article  PubMed  Google Scholar 

  40. Lydon D, psychosocial factors impacting on treatment adherence in diabetes. student psychology journal volume i. available at: http://ebookbrowse.com/psychosocial-factors-impacting-on-treatmentadherence-in-diabetes-pdf-d192697469

  41. Rasmussen B, Dunning P, O'Connell B. Young women with diabetes: using Internet communication to create stability during life transitions. J Clin Nurs. 2007;16(3A):17–24.

    Article  PubMed  Google Scholar 

Download references

Conflict of interest

The authors declare that have no conflict of interest.

Author contribution

MD wrote the research proposal; conducted interviews; read, coded, and analyzed the transcripts; and wrote the manuscript. SA read, coded, and analyzed the transcripts and wrote the manuscript. SP and NSF discussed about data analysis and reviewed/edited the manuscript. MA reviewed/edited the manuscript. All data were accessible for all authors, and they can take responsibility for the accuracy of this report.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Samereh Abdoli.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Irani, M.D., Abdoli, S., Parvizy, S. et al. Breaking stigma within us: the role of people with type 1 diabetes in overcoming diabetes-related stigma. Int J Diabetes Dev Ctries 35, 264–270 (2015). https://doi.org/10.1007/s13410-015-0358-4

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s13410-015-0358-4

Keywords

  • Anti-stigma interventions
  • Diabetes type 1-related stigma
  • Qualitative research
  • Stigma management
  • Iran