Personal Illness Experience in Russian Social Media: Between Willingness to Share and Stigmatization

  • Victoria DudinaEmail author
  • Darja Judina
  • Konstantin Platonov
Conference paper
Part of the Lecture Notes in Computer Science book series (LNCS, volume 11938)


Social media creates a public space where people with different illnesses can communicate with others experiencing the same conditions and discuss issues that were discussed only in private before. The willingness to share personal health information and private experience is important for successful peer-to-peer health communication but often is prevented by the fear of being stigmatized. The goal of our research was to understand the relationships between the willingness of people with different illnesses to share personal experiences in online communities and the extent of illness stigmatization. We compared online communities devoted to cancer, diabetes, hepatitis B and C, HIV and tuberculosis on the most popular Russian-language social networking site “Vkontakte”. We selected open groups with memberships of more than 1000 users. For selected communities we measured the share of personal stories, the proportion of deactivated or anonymous profiles among users sharing personal experiences and community engagement rates. We found some dependencies between stigmatization of disease and users’ willingness to discuss their personal experiences online. The share of personal stories in the hepatitis and HIV communities was smaller, than in oncology and diabetic communities. But tuberculosis, which occupies a middle position on the scale of stigmatization, showed the largest share of personal stories. The most anonymity was revealed in the communities of highly stigmatized illnesses. We revealed also that a greater willingness of users to share personal experience is associated with a higher engagement rate. Our results contribute to understanding the effects of social media on health.


Online health community Illness Stigma Personal experience 



This work was supported by the Russian Fund for Basic Research [grant number 18-013-00726 A]. Research was conducted at the Research park of St. Petersburg State University “Center for Sociological and Internet Research”.


  1. 1.
    Andersen, K.N., Medaglia, R., Henriksen, H.Z.: Social media in public health care: impact domain propositions. Gov. Inf. Q. 29(4), 462–469 (2012)CrossRefGoogle Scholar
  2. 2.
    Anderson, C.L., Agarwal, R.: The digitization of healthcare: boundary risks, emotion, and consumer willingness to disclose personal health information. Inf. Syst. Res. 22(3), 469–490 (2011)CrossRefGoogle Scholar
  3. 3.
    Attai, D.J., Cowher, M.S., Al-Hamadani, M., Schoger, J.M., Staley, A.C., Landercasper, J.: Twitter social media is an effective tool for breast cancer patient education and support: patient-reported outcomes by survey. J. Med. Internet Res. 17(7) (2015). Scholar
  4. 4.
    Bender, J.L., Jimenez-Marroquin, M.C., Jadad, A.R.: Seeking support on Facebook: a content analysis of breast cancer groups. J. Med. Internet Res. 13(1) (2011). Scholar
  5. 5.
    Blank, T.O., Schmidt, S.D., Vangsness, S.A., Monteiro, A.K., Santagata, P.V.: Differences among breast and prostate cancer online support groups. Comput. Hum. Behav. 26(6), 1400–1404 (2010). Scholar
  6. 6.
    Chen, A.T.: Exploring online support spaces: using cluster analysis to examine breast cancer, diabetes and fibromyalgia support groups. Patient Educ. Couns. 87, 250–257 (2012)CrossRefGoogle Scholar
  7. 7.
    Colineau, N., Paris, C.: Talking about your health to strangers: understanding the use of online social networks by patients. New Rev. Hypermedia Multimed. 16(1–2), 141–160 (2010)CrossRefGoogle Scholar
  8. 8.
    Conrad, P., Bandini, J., Vasquez, A.: Illness and the internet: from private to public experience. Health 20(1), 22–32 (2016). Scholar
  9. 9.
    Crandall, C.S., Moriarty, D.: Physical illness stigma and social rejection. Br. J. Soc. Psychol. 34(1), 67–83 (1995)CrossRefGoogle Scholar
  10. 10.
    Decree of the Government of the Russian Federation dated 01.12.2004 No715 (ed. 13.07.2012) On Approval of the List of Socially Significant Diseases and the List of Diseases that are Dangerous to others. Accessed 22 Apr 2019
  11. 11.
    Flickinger, T.E.: Social support in a virtual community: analysis of a clinic-affiliated online support group for persons living with HIV/AIDS. AIDS Behav. 21(11), 3087–3099 (2017)CrossRefGoogle Scholar
  12. 12.
    Foundation of Public Opinion (FOM): Internet in Russia: Penetration Dynamics. Winter 2017–2018. Accessed 22 Apr 2019
  13. 13.
    Fox, S.: The Social Life of Health Information. Pew Research Center: Internet, Science & Tech. Accessed 22 Apr 2019
  14. 14.
    Gómez-Zúñiga, B., Fernandez-Luque, L., Pousada, M., Hernández-Encuentra, E., Armayones, M.: ePatients on YouTube: analysis of four experiences from the patients’ perspective. Medicine 2.0 1(1) (2012). Scholar
  15. 15.
    Google. What are Russians Looking for in the Internet about Health and Medicine. Accessed 22 Apr 2019
  16. 16.
    GoogleBlog: A Remedy for your Health-Related Questions: Health info in the Knowledge Graph. Accessed 22 Apr 2019
  17. 17.
    Greene, J.A., Choudhry, N.K., Kilabuk, E., Shrank, W.H.: Online social networking by patients with diabetes: a qualitative evaluation of communication with Facebook. J. Gen. Intern. Med. 26(3), 287–292 (2011)CrossRefGoogle Scholar
  18. 18.
    Ho, Y.X., O’Connor, B.H., Mulvaney, S.A.: Features of online health communities for adolescents with type 1 diabetes. West. J. Nurs. Res. 36(9), 1183–1198 (2014). Scholar
  19. 19.
    Horter, S., Stringer, B., Venis, S., du Cros, P.: I can also serve as an inspiration: a qualitative study of the TB&Me blogging experience and its role in MDR-TB treatment. PloS one 9(9) (2014). Scholar
  20. 20.
    Huh, J., et al.: Personas in online health communities. J. Biomed. Inform. 63, 212–225 (2016)CrossRefGoogle Scholar
  21. 21.
    LiveInternet, Rating, Accessed 22 Apr 2019
  22. 22.
    Mo, P.K., Coulson, N.S.: Exploring the communication of social support within virtual communities: a content analysis of messages posted to an online HIV/AIDS support group. Cyberpsychol. Behav. 11(3), 371–374 (2008)CrossRefGoogle Scholar
  23. 23.
    Petronio, S.: Boundaries of Privacy: Dialectics of Disclosure. SUNY Press, Albany (2002)Google Scholar
  24. 24.
    Petronio, S.: Communication boundary management: a theoretical model of managing disclosure of private information between married couples. Commun. Theory 1(4), 311–335 (1991)CrossRefGoogle Scholar
  25. 25.
    Pew Research Center: Internet, Science & Tech. Health Fact Sheet. Accessed 22 Apr 2019
  26. 26.
    Schneider, J.W., Conrad, P.: Having Epilepsy: The Experience and Control of Illness. Temple University Press, Philadelphia (1983)Google Scholar
  27. 27.
    Smailhodzic, E., Boonstra, A., Langley, D.: Social media enabled interactions in healthcare: towards a typology. In: 23rd European Conference on Information Systems (ECIS), Münster, Germany (2015).
  28. 28.
    Smailhodzic, E., Hooijsma, W., Boonstra, A., et al.: Social media use in healthcare: a systematic review of effects on patients and on their relationship with healthcare professionals. BMC Health Serv. Res. 16 (2016).
  29. 29.
    Vkontakte: API Methods. Accessed 22 Apr 2019
  30. 30.
    Vkontakte: Catalog, Accessed 22 Apr 2019
  31. 31.
    Wai, P.P., et al.: Community-based MDR-TB care project improves treatment initiation in patients diagnosed with MDR-TB in Myanmar. PLoS ONE 13(3) (2018). Scholar
  32. 32.
    Yandex Research: Health Search. Accessed 22 Apr 2019
  33. 33.
    Zhang, Y., He, D., Sang, Y.: Facebook as a platform for health information and communication: a case study of a diabetes group. J. Med. Syst. 37(13), 1–12 (2013)Google Scholar
  34. 34.
    Ziebland, S., Wyke. S.: Health and illness in a connected world: how might sharing experiences on the internet affect people’s health? Milbank Q. 90(2), 219–249 (2012)CrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Victoria Dudina
    • 1
    Email author
  • Darja Judina
    • 2
  • Konstantin Platonov
    • 2
  1. 1.Department of SociologySaint Petersburg State UniversitySaint PetersburgRussia
  2. 2.Center for Sociological and Internet ResearchSaint Petersburg State UniversitySaint PetersburgRussia

Personalised recommendations