Living with Sjögren’s Syndrome: An Analysis of YouTube Vlogs on the Autoimmune Disease

References

• Addlakha, R. (2005). Affliction and testimony: A reading of the diary of Parvati Devi. Indian Journal of Gender Studies, 12(1), 63–82. https://doi.org/10.1177/097152150401200103
   Web of Science ®Google Scholar
• American College of Rheumatology. (n.d.). Sjögren’s syndrome. https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Sjogrens-Syndrome
   Google Scholar
• Aykan, B., & Güvenç-Salgırlı, S. (2015). Responsibilizing individuals, regulating health: Debating public spots, risk, and neoliberal governmentality in contemporary Turkey. New Perspectives on Turkey, 53, 71–92. Cambridge University Press. https://doi.org/10.1017/npt.2015.19
   Google Scholar
• Ballard, K., Lowton, K., & Wright, J. (2006). What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertility and Sterility, 86(5), 1296–1301. https://doi.org/10.1016/j.fertnstert.2006.04.054
   PubMed Web of Science ®Google Scholar
• Balleys, C., Millerand, F., Thoer, C., & Duque, N. (2020). Searching for oneself on YouTube: Teenage peer socialization and social recognition processes. Social Media + Society, 6(2), 1–11. https://doi.org/10.1177/2056305120909474
   Web of Science ®Google Scholar
• Birdwell, B. G., Herbers, J. E., & Kroenke, K. (1993). Evaluating chest pain. The patient’s presentation style alters the physician’s diagnostic approach. Archives of Internal Medicine, 17, 1991–1995.
   Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
   Google Scholar
• Byrne, D. (2022). A worked example of Braun and Clarke’s approach to reflexive thematic analysis. Quality & Quantity, 56(3), 1391–1412. https://doi.org/10.1007/s11135-021-01182-y
   Google Scholar
• Cleveland Clinic. (n.d.). Sjögren’s syndrome. https://my.clevelandclinic.org/health/diseases/4929-sjogrens-syndrome
   Google Scholar
• Cole, K. L. (2020). The paradox of patient consent: A feminist account of illness and healthcare. Health Communication, 36(8), 982–991. https://doi.org/10.1080/10410236.2020.1724645
   PubMed Web of Science ®Google Scholar
• Crawford, R. (1980). Healthism and the medicalization of everyday life. International Journal of Health Services, 10(3), 365–388. https://doi.org/10.2190/3H2H-3XJN-3KAY-G9NY
   PubMed Web of Science ®Google Scholar
• Crawford, R. (2006). Health as a meaningful social practice. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 10(4), 401–420. https://doi.org/10.1177/1363459306067310
   Web of Science ®Google Scholar
• Denny, E. (2004, June). Women’s experience of endometriosis. Journal of Advanced Nursing, 46(6), 641–648. https://doi.org/10.1111/j.1365-2648.2004.03055.x
   PubMed Web of Science ®Google Scholar
• Dodds, S. (2008). Inclusion and exclusion in women’s access to health and medicine. International Journal of Feminist Approaches to Bioethics, 1(2), 58–79. https://doi.org/10.2979/FAB.2008.1.2.58
   Google Scholar
• Dumit, J. (2006). Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses. Social Science & Medicine, 62(3), 577–590. https://doi.org/10.1016/j.socscimed.2005.06.018
   PubMed Web of Science ®Google Scholar
• Dutta, M. J. (2008). Communicating health: A culture-centered approach. Polity.
   Google Scholar
• Fox, R., Stern, M., & Michelson, P. (2000). Update in Sjögren syndrome. Current Opinion in Rheumatology, 12(5), 391–398. https://doi.org/10.1097/00002281-200009000-00007
   PubMed Web of Science ®Google Scholar
• Frantsve, L. M. E., & Kerns, R. D. (2007). Patient-provider interactions in the management of chronic pain: Current findings within the context of shared medical decision making. Pain Medicine, 8(1), 25–35. https://doi.org/10.1111/j.1526-4637.2007.00250.x
   PubMed Web of Science ®Google Scholar
• Frohlich, D. O. (2016). The social construction of inflammatory bowel disease using social media technologies. Health Communication, 31(11), 1412–1420. https://doi.org/10.1080/10410236.2015.1077690
   PubMed Web of Science ®Google Scholar
• Gill, R., & Scharff, C. (Eds.). (2011). New femininities: Postfeminism, neoliberalism and subjectivity. Palgrave Macmillan UK. https://doi.org/10.1057/9780230294523
   Google Scholar
• Glasgow, S. (2012). The politics of self-craft: Expert patients and the public health management of chronic disease. SAGE Open, 2(3), 215824401245257. https://doi.org/10.1177/2158244012452575
   Google Scholar
• Groenevelt, I. (2022). “It’s not all nice and fun”: Narrating contested illness on YouTube and Instagram. Health, 26(5), 589–604. https://doi.org/10.1177/13634593211017187
   PubMed Web of Science ®Google Scholar
• Hadjistavropoulos, H. D., Ross, M. A., & von Baeyer, C. L. (1990). Are physicians’ ratings of pain affected by patients’ physical attractiveness? Social Science & Medicine, 31(1), 69–72. https://doi.org/10.1016/0277-9536(90)90011-G
   PubMed Web of Science ®Google Scholar
• Hale, B. J., Gonzales, A., & Richardson, M. (2018, August). Vlogging cancer: Predictors of social support in YouTube cancer vlogs. Cyberpsychology, Behavior, and Social Networking, 21(9), 575–581. https://doi.org/10.1089/cyber.2018.0176
   PubMed Web of Science ®Google Scholar
• Harvey, D. (2005). Neoliberalism: A brief history. Oxford University Press. https://doi.org/10.1093/oso/9780199283262.003.0010
   Google Scholar
• Huff, R. (2020). Governmentality. Encyclopaedia Britannica. https://www.britannica.com/topic/governmentality
   Google Scholar
• Huh, J., Liu, L. S., Neogi, T., Inkpen, K., & Pratt, W. (2014, August). Health vlogs as social support for chronic illness management. ACM Transactions on Computer-Human Interaction: A Publication of the Association for Computing Machinery, 21(4). https://doi.org/10.1145/2630067
   PubMed Web of Science ®Google Scholar
• Johns Hopkins Sjögren’s Center. (n.d.). Blood and urine tests. https://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/blood-and-urine-tests/
   Google Scholar
• Lawless, B., & Chen, Y. (2018). Developing a method of critical thematic analysis for qualitative communication inquiry. Howard Journal of Communications, 30(1), 92–106. https://doi.org/10.1080/10646175.2018.1439423
   Web of Science ®Google Scholar
• Liu, L., Huh, J., Neogi, T., Inkpen, K., & Pratt, W. (2013). Health vlogger-viewer interaction in chronic illness. In CHI ’13: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (pp. 49–58). https://doi.org/10.1145/2470654.2470663.
   Google Scholar
• Lupton, D. (1994). Toward the development of critical health communication praxis. Health Communication, 6(1), 55–67. https://doi.org/10.1207/s15327027hc0601_4
   Google Scholar
• Lupton, D. (1995). The imperative of health: Public health and the regulated body. SAGE Publications Ltd. https://doi.org/10.4135/9781446221976
   Google Scholar
• Lupton, D. (2013). The digitally engaged patient: Self-monitoring and self-care in the digital health era. Social Theory & Health, 11(3), 256–270. https://doi.org/10.1057/sth.2013.10
   Web of Science ®Google Scholar
• Mishra, S. (2021). Looking for medical advice in everyday digital spaces: A qualitative study of Indians connecting with physicians on facebook. Vikalpa: The Journal for Decision Makers, 46(2), 86–98. https://doi.org/10.1177/02560909211023163
   Google Scholar
• Molyneaux, H., O’Donnell, S., Gibson, K., & Singer, J. (2008). Exploring the gender divide on YouTube: An analysis of the creation and reception of vlogs. American Communication Journal, 10(1), 1–14. https://www.academia.edu/654119/Exploring_the_gender_divide_on_YouTube_An_analysis_of_the_creation_and_reception_of_vlogs
   Google Scholar
• Montali, L., Frigerio, A., Riva, P., & Invernizzi, P. (2011, November). ‘It’s as if PBC didn’t exist’: The illness experience of women affected by primary biliary cirrhosis. Psychology & Health, 26(11), 1429–1445. https://doi.org/10.1080/08870446.2011.565876
   PubMed Web of Science ®Google Scholar
• Moreno, M. A., Goniu, N., Moreno, P. S., & Diekema, D. (2013). Ethics of social media research: Common concerns and practical considerations. Cyberpsychology, Behavior and Social Networking, 16(9), 708–713. https://doi.org/10.1089/cyber.2012.0334
   PubMed Web of Science ®Google Scholar
• Ong, A. (2006). Neoliberalism as exception: Mutations in citizenship and sovereignty. Duke University Press.
   Google Scholar
• Peck, J., & Theodore, N. (2012). Reanimating neoliberalism: Process geographies of neoliberalisation. Social Anthropology, 20(2), 177–185. https://doi.org/10.1111/j.1469-8676.2012.00194.x
   Google Scholar
• Petersen, A. R. (1996). Risk and the regulated self: The discourse of health promotion as politics of uncertainty. Journal of Sociology, 32(1), 44–57. https://doi.org/10.1177/144078339603200105
   Web of Science ®Google Scholar
• Pond, R., Stephens, C., & Alpass, F. (2010). Virtuously watching one’s health: Older adults’ regulation of self in the pursuit of health. Journal of Health Psychology, 15(5), 734–743. https://doi.org/10.1177/1359105310368068
   PubMed Web of Science ®Google Scholar
• Ringrose, J., & Walkerdine, V. (2008). Regulating the abject. Feminist Media Studies, 8(3), 227–246. https://doi.org/10.1080/14680770802217279
   Google Scholar
• Rose, N. (1992). Governing the enterprising self. In P. Morris & P. Heelas (Eds.), The values of enterprise culture: The moral debate (pp. 141–164). Routledge.
   Google Scholar
• Rose, N. (2001). The politics of life itself. Theory, Culture & Society, 18(6), 1–30. https://doi.org/10.1177/02632760122052020
   Web of Science ®Google Scholar
• Rose, N., & Miller, P. (1992). Political power beyond the state: Problematics of government. The British Journal of Sociology, 43(2), 173–205. https://doi.org/10.2307/591464
   Web of Science ®Google Scholar
• Rottenberg, C. (2013). The rise of neoliberal feminism. Cultural Studies, 28(3), 418–437. https://doi.org/10.1080/09502386.2013.857361
   Web of Science ®Google Scholar
• Sangeorzan, I., Andriopoulou, P., & Livanou, M. (2019). Exploring the experiences of people vlogging about severe mental illness on YouTube: An interpretative phenomenological analysis. Journal of Affective Disorders, 246, 422–428. https://doi.org/10.1016/j.jad.2018.12.119
   PubMed Web of Science ®Google Scholar
• Sastry, S., & Basu, A. (2020). How to have (critical) method in a pandemic: Outlining a culture-centered approach to health discourse analysis. Frontiers in Communication, 5. https://doi.org/10.3389/fcomm.2020.585954
   Google Scholar
• Sastry, S., & Dutta, M. J. (2013). Global health interventions and the “common sense” of neoliberalism: A dialectical analysis of PEPFAR. Journal of International & Intercultural Communication, 6(1), 21–39. https://doi.org/10.1080/17513057.2012.740682
   Google Scholar
• Sastry, S., Zoller, H. M., & Basu, A. (2021). Editorial: Doing critical health communication: A forum on methods. Frontiers in Communication. https://doi.org/10.3389/fcomm.2020.637579
   Google Scholar
• Satija, S. (2022). Reclaiming illness, pain and vulnerability through online writings: An analysis of skin stories. Feminist Media Studies, 1–18. https://doi.org/10.1080/14680777.2022.2112737
   Web of Science ®Google Scholar
• Scharff, C. (2012). Repudiating feminism: Young women in a neoliberal world. Routledge.
   Google Scholar
• Scharff, C. (2014). Gender and neoliberalism: Exploring the exclusions and contours of neoliberal subjectivities. Theory, Culture & Society, 33(6), 107–122. https://www.theoryculturesociety.org/blog/christina-scharff-on-gender-and-neoliberalism
   Google Scholar
• Scott, K. D., Hintz, E. A., & Harris, T. M. (2020). “Having pain is normal:” How talk about chronic pelvic and genital pain reflects messages from menarche. Health Communication, 37(3), 296–306. https://doi.org/10.1080/10410236.2020.1837464
   PubMed Web of Science ®Google Scholar
• Seo, W., & Jung, H. (2017). Exploring the community of blind or visually impaired people on YouTube. In Proceedings of the 19th International ACM SIGACCESS Conference on Computers and Accessibility (pp. 371–372). https://doi.org/10.1145/3132525.3134801
   Google Scholar
• Shewale, R. (2023). YouTube statistics for 2023. https://www.demandsage.com/youtube-stats/
   Google Scholar
• Sjogren’s Foundation. (n.d.). Understanding Sjögren’s. https://www.sjogrens.org/understanding-sjogrens
   Google Scholar
• Sohn, E. (2021, July 14). Why autoimmunity is most common in women. Nature, 595(7867), 51–53. https://doi.org/10.1038/d41586-021-01836-9
   Google Scholar
• Springer, S. (2012). Neoliberalism as discourse: Between Foucauldian political economy and Marxian poststructuralism. Critical Discourse Studies, 9(2), 133–147. https://doi.org/10.1080/17405904.2012.656375
   Web of Science ®Google Scholar
• Ussher, J. M. (2013). Diagnosing difficult women and pathologizing femininity: Gender bias in psychiatric nosology. Feminism & Psychology, 23(1), 63–69. https://doi.org/10.1177/0959353512467968
   Web of Science ®Google Scholar
• Werner, A., Isaksen, L., & Malterud, K. (2004). “I am not the kind of woman who complains of everything”—illness stories on self and shame in women with chronic pain. Social Science & Medicine, 59, 1035–1045. https://doi.org/10.1016/j.socscimed.2003.12.001
   PubMed Web of Science ®Google Scholar
• Werner, A., & Malterud, K. (2003). It is hard work behaving as a credible patient: Encounters between women with chronic pain and their doctors. Social Science & Medicine, 57, 1409–1419. https://doi.org/10.1016/S0277-9536(02)00520-8
   PubMed Web of Science ®Google Scholar
• Wilson, L., Whitehead, L., & Burrell, B. (2011, October). Learning to live well with chronic fatigue: The personal perspective. Journal of Advance Nursing, 67(10), 2161–2169. https://doi.org/10.1111/j.1365-2648.2011.05666.x
   PubMed Web of Science ®Google Scholar
• Woods, A. (2011). Post-narrative – an appeal. Narrative Inquiry, 21(2), 399–406. https://doi.org/10.1075/ni.21.2.20woo
   PubMed Web of Science ®Google Scholar
• Zoller, H. M. (2005). Health activism: Communication theory and action for social change. Communication Theory, 15(4), 341–364. https://doi.org/10.1111/j.1468-2885.2005.tb00339.x
   Web of Science ®Google Scholar
• Zoller, H. M. (2008). Technologies of neoliberal govermentality. In H. M. Zoller & M. J. Dutta (Eds.), Emerging perspectives in health communication: Interpretive, critical and cultural approaches (pp. 390–410). Lawrence Erlbaum Associates.
   Google Scholar
• Zoller, H. M., & Kline, K. N. (2008). Theoretical contributions of interpretive and critical research in health communication. In C. Beck (Ed.), Communication yearbook (Vol. 32, pp. 89–136). Routledge.
   Google Scholar