From Blogger to Activist: Patient Activism Through the Lens of Cancer Blogging
DOI:
https://doi.org/10.14515/monitoring.2025.6.3000Keywords:
patient activism, blogging, cancer, qualitative analysis, media studies, grounded theoryAbstract
The article presents the results of a sociological study examining the dynamics of individual patient activism among bloggers with cancer. The study focuses on describing the transition from personal experience of living with the disease to active participation in solving the problems of cancer patients. The aim of the study is to identify and describe the developmental trajectories of individual patient activism among cancer bloggers and the factors that contribute to it. Data was collected from the blogosphere segment located on the Yandex Zen resource using a parser written in Python. Qualitative text analysis within the grounded theory method was conducted using ATLAS.ti 9 software. Based on the study results, the authors developed four models of blogger’s behavior, namely: a model of the transition of a patient blogger to activism; a model of patient activism among cancer bloggers; a model of the relationship between potential predictors and patient activism; and a model of the integration of a cancer blogger into the patient community. The authors conclude that the three key areas of patient activism (community participation, advocacy, and engagement) have their own unique dynamics and depend on the severity of the problems faced by the patient, the blogger's level of awareness in the field of oncology, attitudes toward medicine and medical professionals, and the patient's personal characteristics.
Acknowledgments. The research was supported by the Russian Scientific Foundation RSF (project No 22-18-00261-P).
References
Богомягкова Е. С. Блогеры в сфере здоровья в оценках горожан: практики, коммуникация, доверие// Мониторинг общественного мнения: экономические и социальные перемены. 2024. № 2. С. 178—202. https://doi.org/10.14515/monitoring.2024.2.2446.
Bogomiagkova E. S. (2024) Health Bloggers in the Assessments of City Residents: Practices, Communication, Trust. Monitoring of Public Opinion: Economic and Social Changes. No. 2. P. 178—202. https://doi.org/10.14515/monitoring.2024.2.2446. (In Russ.)
Дудина В. И. Как активизм здоровья меняет общество // Социологические исследования. 2023a. № 12. С. 153—156.
Dudina V.I. (2023a) How Health Activism Is Changing Society. Sociological Studies. No. 12. P. 153—156. (In Russ.)
Дудина В. И. Формы и стратегии активизма пациентов в цифровом пространстве // Материалы XIII международной социологической Грушинской конференции «Переустройство мира: исследования (в) новой реальности», 25—27 мая 2023. М.: ВЦИОМ, 2023b. С. 209—213.
Dudina V.I. (2023b) Forms and Strategies of Patient Activism in the Digital Space. In: Materials of the XIII International Sociological Grushin Conference, May 25—27, 2023. Moscow: VCIOM. P. 209—213. (In Russ.)
Дудина В. И. Социология встречается с эпидемиологией: исследования «социального заражения» в поисках теоретической основы // Социологические исследования. 2024. № 10. С. 3—14. https://doi.org/10.31857/S0132162524100019.
Dudina V.I. (2024) Sociology Meets Epidemiology: Social Contagion Research in Search of Theoretical Basis. Sociological Studies. No. 10. P. 3—14. https://doi.org/10.31857/S0132162524100019. (In Russ.)
Кульпин С. В., Савчук Г. А., Якимова О. А. Зачем молодежь создает контент о здоровом образе жизни: факторный анализ тематических блогов // Мониторинг общественного мнения: экономические и социальные перемены. 2020. № 2. С. 168—190. https://doi.org/10.14515/monitoring.2020.2.656.
Kulpin S. V., Savchuk G. A., Iakimova O. A. (2020) Why Young People Create Content about Healthy Lifestyles: Factor Analysis of Thematic Blogs. Monitoring of Public Opinion: Economic and Social Changes. No. 2. P. 168—190. https://doi.org/10.14515/monitoring.2020.2.656. (In Russ.)
Тюляндин С. А., Жуков Н. В. Правда о российской онкологии: проблемы и возможные решения / под ред. С. А. Тюляндина, Н.В. Жукова. М.: Общероссийская общественная организация «Российское общество клинической онкологии», 2018.
Tyulyandin S. A., Zhukov N. V. (2018) The Truth about Russian Oncology: Problems and Possible Solutions. Moscow: All-Russian Public Organization «Russian Society of Clinical Oncology». (In Russ.)
Юдина Д., Дудина В. Цифровой ВИЧ-активизм в России: агенты и повестка // Журнал исследований социальной политики. 2023. Т. 21. № 3. С. 467—484. https://doi.org/10.17323/727-0634-2023-21-3-467-484.
Judina D., Dudina V. (2023) Digital HIV Activism in Russia: Agents and Agenda. The Journal of Social Policy Studies. Vol. 21. No. 3. P. 467—484. https://doi.org/10.17323/727-0634-2023-21-3-467-484. (In Russ.)
Andersson Y. (2019) Blogs and the Art of Dying: Blogging With, and About, Severe Cancer in Late Modern Swedish Society. OMEGA — Journal of Death and Dying. Vol. 79. No. 4. P. 394—413. https://doi.org/10.1177/0030222817719806.
Bennett W.L., Segerberg A. (2013) The Logic of Connective Action: Digital Media and the Personalization of Contentious Politics. Cambridge: Cambridge University Press.
de Boer M., Slatman J. (2014) Blogging and Breast Cancer: Narrating One’s Life, Body and Self on the Internet. Women’s Studies International Forum. Vol. 44. P. 17—25. https://doi.org/10.1016/j.wsif.2014.02.014.
Burchardt M. (2019) Illness Narratives as Theory and Method. London: SAGE Publications Ltd.
Centola D. (2021) Change: How to Make Big Things Happen. New York: Little, Brown Spark.
Centola D. (2018) How Behavior Spreads: The Science of Complex Contagions. Princeton, NJ: Princeton University Press.
Cohen S. S., Mason D. J., Kovner Ch., Leavitt J. K., Pulcini J., Sochalski J. (1996) Stages of Nursing’s Political Development: Where We’ve Been and Where We Ought to Go. Nursing Outlook. Vol. 44. No. 6. P. 259—266. https://doi.org/10.1016/S0029-6554(96)80081-9.
Hintermayer M., Sorin M., Romero J. M., Maritan S. M., Chen O. J., Rawal S. (2020) Cancer Patient Perspectives During the COVID-19 Pandemic: A Thematic Analysis of Cancer Blog Posts. Patient Experience Journal. Vol. 7. No. 3. P. 31—43. https://doi.org/10.35680/2372-0247.1514.
Kim S., Chung D.S. (2007) Characteristics of Cancer Blog Users. Journal of the Medical Library Association: JMLA. Vol. 95. No. 4. P. 445—450. https://doi.org/10.3163/1536-5050.95.4.445.
Nishioka S., Watanabe T., Asano M., Yamamoto T., Kawakami K., Yada S., Aramaki E., Yajima H., Kizaki H., Hori S. (2022) Identification of Hand-Foot Syndrome from Cancer Patients’ Blog Posts: BERT-Based Deep-Learning Approach to Detect Potential Adverse Drug Reaction Symptoms. PLOS ONE. Vol. 17. No. 5. Art. e0267901. https://doi.org/10.1371/journal.pone.0267901.
Petersen A., Schermuly A.C., Anderson A. (2019) The Shifting Politics of Patient Activism: From Bio-Sociality to Bio-Digital Citizenship. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine. Vol. 23. No. 4. P. 478—494. https://doi.org/10.1177/1363459318815944.
Rabeharisoa V., Moreira T., Akrich M. (2014) Evidence-Based Activism: Patients’, Users’ and Activists’ Groups in Knowledge Society. BioSocieties. Vol. 9. No. 2. P. 111—128. https://doi.org/10.1057/biosoc.2014.2.
Ressler P.K., Bradshaw Y. S., Gualtieri L., Chui K. K. H. (2012) Communicating the Experience of Chronic Pain and Illness Through Blogging. Journal of Medical Internet Research. Vol. 14. No. 5. Art. e143. https://doi.org/10.2196/jmir.2002.
Setoyama Y., Yamazaki Y., Namayama K. (2011) Benefits of Peer Support in Online Japanese Breast Cancer Communities: Differences Between Lurkers and Posters. Journal of Medical Internet Research. Vol. 13. No. 4. Art. e1696. https://doi.org/10.2196/jmir.1696.
Schermuly A. C, Petersen A., Anderson A. (2021) ‘I’m Not an Activist!’: Digital Self-Advocacy in Online Patient Communities. Critical Public Health. Vol. 31. No. 2. P. 204–213. https://doi.org/10.1080/09581596.2020.1841116.
Stage C. (2017) Cancer Blogging and Connective Action. In: Stage C. (ed.) Networked Cancer: Affect, Narrative and Measurement. Cham: Springer International Publishing. P. 45—75.
Stahly G.B. (1989) Psychosocial Aspects of the Stigma of Cancer: An Overview. Journal of Psychosocial Oncology. No. 6. P. 3-27.
van der Eijk M., Faber M. J., Aarts J. W. M., Kremer J.A.M., Munneke M., Bloem B.R. (2013) Using Online Health Communities to Deliver Patient-Centered Care to People With Chronic Conditions. Journal of Medical Internet Research. Vol. 15. No. 6. Art. e2476. https://doi.org/10.2196/jmir.2476.
Wang Y., Feng W. (2022) Cancer-Related Psychosocial Challenges. General Psychiatry. No. 35. Art. e100871. https://doi:10.1136/gpsych-2022-100871.
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