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

Victoria Dudina, Darja Judina, Konstantin Platonov

Research output


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.

Original languageEnglish
Title of host publicationInternet Science - 6th International Conference, INSCI 2019, Proceedings
EditorsSamira El Yacoubi, Franco Bagnoli, Giovanna Pacini
PublisherSpringer Nature
Number of pages12
ISBN (Print)9783030347697
Publication statusPublished - 1 Jan 2019
Event6th International Conference on Internet Science, INSCI 2019 - Perpignan
Duration: 2 Dec 20195 Dec 2019

Publication series

NameLecture Notes in Computer Science (including subseries Lecture Notes in Artificial Intelligence and Lecture Notes in Bioinformatics)
Volume11938 LNCS
ISSN (Print)0302-9743
ISSN (Electronic)1611-3349


Conference6th International Conference on Internet Science, INSCI 2019

Scopus subject areas

  • Theoretical Computer Science
  • Computer Science(all)

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