Patient narratives from COVID-19 wards in social media

Authors

  • Lekhtsier Vitaliy L. Samara National Research University named after S.P.Korolev, 34, Moskovskoe shosse, Samara, 443086, Russian Federation
  • Anna S. Gotlib Samara National Research University named after S.P.Korolev, 34, Moskovskoe shosse, Samara, 443086, Russian Federation

DOI:

https://doi.org/10.21638/spbu12.2022.405

Abstract

This article presents the results of an empirical study of the narrative “reports” of patients from СOVID wards, conducted by them in different waves of the pandemic (2020-2021) on social media. The subject of the analysis is the motives for conducting these reports and the typology of patients’ narratives posted on the social network. The analysis was based on the idea of a “digital sickness style” (the combination of the patient’s “sickness role”, family and professional roles and the narrative of illness and treatment while in hospital thanks to the mobile Internet) and the theory of patient storytelling developed by representatives of the “narrative turn” in medical social research. Qualitative analysis of posts (texts and photos) through a netnography optic also took into account the network communication pragmatics, commentators’ reactions to the posts of narrators, affecting the pace and content of patients’ postings. The study identified three motives for online posting by COVID ward patients - to be a source of reliable, first-hand ethnographic knowledge about what is happening in hospital wards, to reassure their online audience, and to gain emotional and informational support from them. The study also identified three types of narratives posted by patients - the “restitution narrative”, “quest narrative”, “angry narrative”. As additional findings, the article offers observations on the differences in the online narratives of СOVID and non-СOVID patients, as well as a number of other constitutive effects of health narrative exchange on the Internet.

Keywords:

patients' narratives, social media, COVID-19 pandemic, care, netnography

Downloads

Download data is not yet available.
 

References

Литература

Elliott A., Urry J. Mobile lives: self, excess and nature. London; New York: Routledge, Taylor & Francis e-Library, 2010.

Eysenbach G. What is e-health? // Journal of Medical Internet Research. 2001. Vol. 3, no. 2. URL:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1761894/ (дата обращения 05.05.2022).

Eysenbach G. Medicine 2.0; social networking, collaboration, participation, apomediation, and openness // Journal of Medical Internet Research. 2008. Vol. 10, no. 3. URL: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2626430/ (дата обращения 05.05.2022).

Sass H.M. E-Health, health promotion and wellness communities in cyberspace // Eubios Journal of Asian and International Bioethics. 2004. No. 14. P. 170–174.

Allen A. Morphing telemedicine — telecare — telehealth — eHealth // Telemed Today. Special iss.: Buyer’s Guide and Directory. 2000. Vol. 1. P. 43.

Леванов В.М. От телемедицины до электронного здравоохранения: эволюция терминов // Медицинский альманах. 2012. № 2. C. 16–19.

Кузьмин К.В., Семенова Е.В., Петрова Л.Е., Закроева А.Г. Коммуникация врача и пациента: прошлое, настоящее, будущее (исторический и медико-социологический анализ). Екатеринбург: Издательство УГМУ, 2016.

Fox S. The social life of health information // Pew Research Center’s Internet & American Life Project. 2011. URL: https://www.pewresearch.org/internet/2011/05/12/the-social-life-of-health-information-2011/ (дата обращения 05.05.2022).

Nath C., Huh L., Adupa A.K., Jonnalagadda S.R. Website sharing in online health communities: A descriptive analysis // Journal of Medical Internet Research Publications. 2016. Vol. 18, no. 18. URL:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4730108/ (дата обращения 05.05.2022).

Antheunis M.L., Tates K., Nieboer T.E. Patients’ and health professionals’ use of social media in health care: motives, barriers and expectations // Patient Educ Couns. 2013. Vol. 92 (3). P. 426–431.

Huo J., Desai D., Hong Y-R., Turner K., Arch G.Mainous A.G., Bian J. Use of social media in health communication: Findings from the health information National Trends Survey 2013, 2014, and 2017 // Cancer Control. 2019. Vol. 26 (1). P. 1–10. URL: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6475857/ (дата обращения 05.05.2022).

Bacigalupe G. Is there a role for social technologies in collaborative healthcare // Families Systems & Health. 2011. Vol. 29 (1). P. 1–14.

Tanis M. What makes the Internet a place to seek social support? New York: Routledge, 2008. P. 290–308.

Charon R. Narrative medicine: Honoring the stories of illness. New York: Oxford University Press, 2006.

Frank A.W. Wounded storyteller: Body, illness, and ethics. Chicago; London: University of Chicago Press, 1995.

Frank A.W. At the will of the body. Reflections on illness. Boston; New York: Houghton Mifflin Co., 2002.

Kleinman A. The Illness Narratives. Suffering, Healing, and the Human Condition. New York: Basic Books, 1988.

Brody H. Stories of sickness. New York: Oxford University Press, 2003.

Jurecic A. Illness as narrative. Pittsburgh: University of Pittsburgh Press, 2012.

Лехциер В.Л. Болезнь: опыт, нарратив, надежда. Очерк социальных и гуманитарных исследований медицины. Вильнюс: Logvino literatūros namai, 2018.

Mol A. The logic of care: Health and the problem of patient choice. London: Routledge, 2008.

Критическая социология заботы: перекрестки социального неравенства: сборник статей / под ред. Е.Бороздиной, Е.Здравомысловой, А.Темкиной. СПб.: Изд-во Европейского университета СПб., 2019.

Kraus F., Boldt J. (eds). Care in Healthcare: Reflections on Theory and Practice. Basingstoke: Palgrave Macmillan, 2018.

Социология пандемии. Проект коронаФОМ / Рук. авт. колл. А.А.Ослон. М.: Институт Фонда общественного мнения (ИнФОМ), 2021.

Рассуждения о коронаВирусе: беседы с социальными мыслителями / Рук. авт. кол. А.А.Ослон; Л.С.Лебедева, Р.А.Садыков, Л.А.Паутова. М.: Институт Фонда общественного мнения (ИнФОМ), 2021.

Volkmer I. Social media & COVID-19: A global study of digital crisis interaction among Gen Z and Millennials. Melbourne: University of Melbourne, 2021.

«Это непохоже на любую другую болезнь»: реальные истории людей с коронавирусом // Муксун.fm. 2020. URL: https://muksun.fm/news/society/09-08-2020/eto-nepohozhe-na-lyubuyudruguyu-bolezn-realnye-istorii-lyudey-s-koronavirusom (дата обращения: 05.05.2022).

Fox S. Medicine 2.0: Peer-to-peer healthcare // Pew Internet & American Life Research Center, 2011. URL: https://www.pewresearch.org/internet/2011/09/18/medicine-2-0-peer-to-peer-healthcare/ (дата обращения: 05.05.2022).

Hawkins A.H. Pathography: patient narratives of illness // Culture and Medicine. 1999. Vol. 171, no. 2. P. 127–129.

Kozinets R.V. Nethnography: Doing ethnographic research online. London: Sage, 2010.

Pink S., Horst H., Postill J., Hiorth L., Lewis T., Tacchi J. Digital Ethnography: Principles and Practice. London: Sage, 2015.

Hine C. Virtual ethnography. London: Sage, 2000.

Kuntsman A. Figurations of Violence and Belonging: Queerness, Migranthood and Nationalism in Cyberspace and Beyond. Oxford, Bern, Berlin, Bruxelles, Frankfurt am Main, New York, Wien: Peter Lang, 2009.

Langer R., Beckman S.C. Sensitive research topics: netnography revisited // Qualitative Market Research. 2005. Vol. 8 (2). P. 189–203.

Рождественская Е., Семенова В. Киберэтнография виртуального сообщества: анализ туристского форума // INTER. Интеракция, интервью, интепретация. 2014. № 7. C. 22–43.

Кронгауз М.А. Публичная интимность // Знамя. 2009. № 12. С. 162–167.

Фуко М. История сексуальности — III: Забота о себе / пер. с фр. Т.Н.Толстой под общ. ред. А.Б.Мокроусова. Киев: Дух и литера; Грунт; М.: Рефл-бук, 1998.

Blau M., Fingerman K.L. Consequential strangers: The power of people who don’t seem to matter… But really do. New York: W.W.Norton & Co., 2009.

Ziguras C. Self-Care: Embodiment, Personal Autonomy and the Shaping of Health Consciousness. London: Routledge, 2003.

Parsons Т. The social system. New York: The Free Press, 1951.

Frank A.W. From sick role to narrative subject: An analytic memoir // Health. 2016. Vol. 20 (1). P. 9–21.

Лехциер В.Л. Каминг-аут в «обществе ремиссии»: к теории свидетельства Артура Франка // Topos: философско-культурологический журнал. 2020. № 2. С. 111–136.

Garro L.C. On the rationality of decision-making studies. Part 1: Decision models of treatment choice. Part 2: Divergent rationalities // Medical Anthropology Quarterly. 1998. Vol. 12 (3). P. 319–355.

References

Elliott A., Urry J. Mobile lives: self, excess and nature. London, New York, Routledge, Taylor & Francis e-Library, 2010.

Eysenbach G. What is e-health? Journal of Medical Internet Research, 2001, vol. 3, no. 2. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1761894/ (accessed: 05.05.2022).

Eysenbach G. Medicine 2.0; social networking, collaboration, participation, apomediation, and openness. Journal of Medical Internet Research, 2008, vol. 10, no. 3. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2626430/ (accessed: 05.05.2022).

Sass H.M. E-Health, health promotion and wellness communities in cyberspace. Eubios Journal of Asian and International Bioethics, 2004, no. 14, pp. 170–174.

Allen A. Morphing telemedicine — telecare — telehealth — eHealth. Telemed Today. Special iss.: Buyer’s Guide and Directory, 2000, vol. 1, p. 43.

Levanov V.M. From telemedicine to e-health: evolution of terms. Medical Almanac, 2012, no. 2, pp. 16–19. (In Russian)

Kuzmin K.V. Semenova E.V., Petrova L.E., Zakroeva A.G. Doctor-patient communication: past, present, future (historical and medical-sociological analysis). Ekaterinburg: UGMU Press, 2016. (In Russian)

Fox S. The social life of health information. Pew Research Center’s Internet & American Life Project, 2011. Available at: https://www.pewresearch.org/internet/2011/05/12/the-social-life-of-health-information-2011/ (accessed: 05.05.2022).

Nath C., Huh L., Adupa A.K., Jonnalagadda S.R. Website sharing in online health communities: A descriptive analysis. Journal of Medical Internet Research Publications, 2016, vol. 18, no. 18. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4730108/ (accessed: 05.05.2022).

Antheunis M.L., Tates K., Nieboer T.E. Patients’ and health professionals’ use of social media in health care: motives, barriers and expectations. Patient Educ Couns, 2013, vol. 92 (3), pp. 426–431.

Huo J., Desai D., Hong Y.-R., Turner K., Arch G., Mainous A.G., Bian J. Use of social media in health communication: Findings from the health information National Trends Survey 2013, 2014, and 2017. Cancer Control, 2019, vol. 26, pp. 1–10. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6475857/ (accessed: 5.05.2022).

Bacigalupe G. Is there a role for social technologies in collaborative healthcare. Families Systems & Health, 2011, vol. 29 (1), pp. 1–14.

Tanis M. What makes the Internet a place to seek social support? New York, Routledge, 2008, pp. 290–308.

Charon R. Narrative medicine: Honoring the stories of illness. New York, Oxford University Press, 2006.

Frank A.W. Wounded storyteller: Body, illness, and ethics. Chicago, London, University of Chicago Press, 1995.

Frank A.W. At the will of the body. Reflections on illness. Boston, New York, Houghton Mifflin Company, 2002.

Kleinman A. The Illness Narratives. Suffering, Healing, and the Human Condition. New York, Basic Books, 1988.

Brody H. Stories of Sickness. New York, Oxford University Press, 2003.

Jurecic A. Illness as Narrative. Pittsburgh, University of Pittsburgh Press, 2012.

Lekhtsier V.L. Disease: experience, narrative, hope. An Essay on Social and Humanistic Studies of Medicine. Vilnius, Logvino literatūros namai, 2018. (In Russian)

Mol A. The logic of care: Health and the problem of patient choice. London, Routledge, 2008.

Critical Sociology of Care: Crossroads of Social Inequality: collection of articles. Borozdina E., Zdravomyslova E., Temkina A. (eds). St Petersburg, EUSP Press, 2019. (In Russian).

Kraus F., Boldt J. (eds). Care in Healthcare: Reflections on Theory and Practice. Basingstoke, Palgrave Macmillan, 2018.

Sociology of the Pandemic. CoronaFOM Project. Oslon A.A. (ed.). Moscow, InFOM Press, 2021. (In Russian)

Discourse on CoronаVirus: conversations with social thinkers. Oslon A.A. (ed.), Lebedeva L. S., Sadykov R.A., Pautova L.A. Moscow, InFOM Press, 2021. (In Russian)

Volkmer I. Social media & COVID-19: A global study of digital crisis interaction among Gen Z and Millennials. Melbourne, University of Melbourne, 2021.

“It’s unlike any other disease”: real stories of people with coronavirus. Muksun.fm. 2020. Available at: https://muksun.fm/news/society/09-08-2020/eto-nepohozhe-na-lyubuyu-druguyu-bolezn-realnye-istorii-lyudey-s-koronavirusom (accessed: 05.05.2022). (In Russian)

Fox S. Medicine 2.0: Peer-to-peer healthcare. Pew Internet & American Life Research Center, 2011. Available at: https://www.pewresearch.org/internet/2011/09/18/medicine-2-0-peer-to-peer-healthcare/ (accessed: 05.05.2022).

Hawkins A.H. Pathography: patient narratives of illness. Culture and Medicine, 1999, vol. 171, no. 2, pp. 127–129.

Kozinets R.V. Nethnography: Doing ethnographic research online. London, Sage, 2010.

Pink S., Horst H., Postill J., Hiorth L., Lewis T., Tacchi J. Digital Ethnography: Principles and Practice. London, Sage, 2015.

Hine C. Virtual ethnography. London, Sage, 2000.

Kuntsman A. Figurations of Violence and Belonging: Queerness, Migranthood and Nationalism in Cyberspace and Beyond. Oxford, Bern, Berlin, Bruxelles, Frankfurt am Main, New York, Wien, Peter Lang, 2009.

Langer R., Beckman S.C. Sensitive research topics: netnography revisited. Qualitative Market Research, 2005, vol. 8 (2), pp. 189–203.

Rozhdestvenskaya E., Semyonova V. Cyberethnography of virtual community: analysis of tourist forum. INTER. Interact, Interview, Interpretation, 2014, no.7, pp. 22–43. (In Russian)

Krongauz M.A. Public intimacy. Banner, 2009, no. 12. pp. 162–167. (In Russian)

Foucault M. The history of sexuality — III: The care of the self. Transl. French by T.N.Tolstaya, ed. A.B.Mokrousov. Kiev, Dukh i literatury, Grunt, Moscow, Refl-book, 1998. (In Russian)

Blau M., Fingerman K.L. Consequential strangers: The power of people who don’t seem to matter… But really do. New York, W.W.Norton & Company, 2009.

Ziguras C. Self-Care: Embodiment, Personal Autonomy and the Shaping of Health Consciousness. London, Routledge, 2003.

Parsons Т. The social system. New York, The Free Press, 1951.

Frank A.W. From sick role to narrative subject: An analytic memoir. Health, 2016, vol. 20 (1), pp. 9–21.

Lekhtsier V.L. Coming out in a ‘remission society’: towards Arthur Frank’s theory of witnessing. Topos: A philosophical and cultural journal, 2020, no. 2, pp. 111–136. (In Russian).

Garro L.C. On the rationality of decision-making studies. Part 1: Decision models of treatment choice. Part 2: Divergent rationalities. Medical Anthropology Quarterly, 1998, vol. 12 (3), pp. 319–355.

Published

2023-04-27

How to Cite

Vitaliy L., L., & Gotlib, A. S. (2023). Patient narratives from COVID-19 wards in social media. Vestnik of Saint Petersburg University. Sociology, 15(4), 384–404. https://doi.org/10.21638/spbu12.2022.405