Illness Experience Sharing on Personal Blogs: A Case Study of Malaysian Breast Cancer Survivors

Wan Nur Asyura Wan Adnan, Noor Aireen Ibrahim, Nur’ain Balqis Haladin, Wan Farah Wani Wan Fakhruddin

Abstract


Illness experience which was very much a private matter is now increasingly becoming a shared public experience on different public spaces including social media, and other interactive online platform such as personal blogs. Past research has shown that sharing illness experience provides emotional support which surpasses traditional face to face support. In addition, studies also suggest that online sharing of illness experience can be both therapeutic as well as beneficial for cancer patients.  Thus, exploring cancer discourse on media is important in enhancing understanding of the nature and characteristics of cancer discourse as constructed on social media. This is especially important in breast cancer illness, in the Malaysian context in which survival rate remains low due to lack of awareness and reluctance to perform screening. Hence, a total of three personal blogs written by breast cancer survivors from Malaysia were examined in this study.  Taking a discourse analytic perspective, this study explored the positions taken by bloggers when constructing their illness experience and how these positions are realised through the different discursive strategies and linguistic devices.  The findings provide insights into how breast cancer patients position themselves when they share their illness experience online. Understanding this new form of illness sharing provides an avenue to better understand breast cancer patients’ journey and their struggles, and the different roles relevant parties can play in their own health care management and information.

 

Keywords: 


Keywords


subject position; illness experience; breast cancer bloggers; social media; breast cancer discourse

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References


Arksey, H. (1994). Expert and lay participation in the construction of medical knowledge. Sociology of Health & Illness. 16(4), 448-468.

Bender, J., Jimenez-Marroquin, M. & Jadad, A. (2011). Seeking support on Facebook: A content analysis of breast cancer groups. Journal of Medical Internet Research. 13(1), e16. https://doi.org/10.2196/jmir.1560

Benetoli, A., Chen, T. F. & Aslani, P. (2017). Consumer health-related activities on social media: Exploratory study. Journal of Medical Internet Research. 19(10), e352. https://doi.org/10.2196/jmir.7656

Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology. 3, 77-101.

Castillo, D.A., Godoy-Izquierdo, D., Vázquez, M.L. & Godoy, J.F. (2011). Illness beliefs about cancer among healthy adults who have and have not lived with cancer patients. The International Journal of

Behavioral Medicine. 18(4), 342-351. https://doi.org/ 10.1007/s12529-010-9141-6.

Cepeda, M.S., Chapman, C.R., Miranda, N., Sanchez, R., Rodriguez, C.H. & Carr, D.B. (2008). Emotional disclosure through patient narrative may improve pain and well-being: Results of a randomized controlled trial in patients with cancer pain. Journal of Pain and Symptom Management. 35(6), 623-631.

Charon, R. & Wyer, P. (2008). Narrative evidence-based medicine. The Lancet. 26(371), 296-297.

Chou, W. S., Hunt, Y., Folkers, A. & Augustson, E. (2011). Cancer survivorship in the age of YouTube and Social Media: A narrative analysis. Journal of Medical Internet Research. 13(1), 1-9.

Clark, J.A. & Mishler, E.G. (1992). Attending to patients' stories: reframing the clinical task. Sociology of Health & Illness. 14(3), 344-372.

Conrad, P., Bandini, J. & Vasquez, A. (2016). Illness and the Internet: From private to public experience. Health. 20(1), 22-32.

Cortes, V. (2013). Using corpus-based analytical methods to study patient talk. In M Antón & E.M Goering (Eds.), Understanding patients’ voices: A multi-method analysis (pp. 51-70). Amsterdam: John Benjamins.

Davies, B. & Harré, R. (1990). Positioning: The discursive production of selves. Journal for the Theory of Social Behaviour. 20(1), 44-63.

Deimling, G. T., Bowman, K. F. & Wagner, L. J. (2007). Cancer survivorship and identity among long-term survivors. Cancer Investigation. 25(8), 758-765.

Dingwall R. (2001). Aspects of Illness. Farnham: Ashgate.

Edley, N. (2001). Analysing masculinity: Interpretive repertoires, ideological dilemmas and subject positions. In M, Wetherell, S. Taylor, & S.J. Yates (Eds.), Discourse as data: A guide for analysis (pp. 189-228). London, UK: Sage Publications.

Fox, S. (2011). The Social Life of Health Information 2011. Pew Research Center: Internet, Science & Tech. Retrieved July 23, 2018 from http://www.pewInternet.org/Reports/2011/HealthTopics.aspx

Frank, A. W. (1995). The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press.

Giustini, D., Ali, S. M., Fraser, M. & Kamel Boulos, M. N. (2018). Effective uses of social media in public health and medicine: A systematic review of systematic reviews. Online Journal of Public Health Informatics. 10(2), e215. https://doi.org/10.5210/ojphi.v10i2.8270

Hamilton, H. & Chou, W.Y.S. (2014). The Routledge Handbook of Language and Health Communication. Abingdon, UK: Routledge.

Hepburn, A. (2000). Power lines: Derrida, discursive psychology and the management of accusations of school bullying. British Journal of Social Psychology. 39(4), 605-628.

http://www.pewinternet.org/2011/05/12/the-social-life-ofhealth-information-2011/

Hodgetts, D. & Chamberlain, K. (2006). Developing a critical media research agenda for health psychology. Journal of Health Psychology, 11(2), 317-327.

Kanaga, K.C., Nithiya, J., & Shatirah, M.F.V.N. (2011). Awareness of breast cancer and screening procedures among Malaysian women. Asian Pacific Journal of Cancer Prevention. 12(8), 1965-1967.

Kaptein, A. A., Hughes, B. M., Murray, M., & Smyth, J. M. (2018). Start making sense: Art informing health psychology. Health Psychology Open. 5(1). htpps://doi.org/10.1177/2055102918760042

Kettendörfer, S. (2014). Emotions during reminiscence: Researching the use of personal pronouns during the recall of sad memories in relation to the degree of Alexithymia. (Unpublished degree thesis). University of Twente, Enschede, Netherlands.

Kimiafar, K., Sarbaz, M., Sales, S.S., Esmaeli, M. & Ghazvini, Z.J. (2016). Breast cancer patients' information needs and information-seeking behavior in a developing country. The Breast, 28, 156-160. https://doi.org/10.1016/j.breast. 2016.05.011

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

Kressler, J. (2014). Women's stories of breast cancer: Sharing information through Youtube video blogs. (Master Thesis). The University of Western Ontario, Canada.

Kreuter, M.W., Green, M.C., Cappella, J.N., Slater, M.D., Wise, M.E. & Woolley, S. (2007). Narrative communication in cancer prevention and control: A framework to guide research and application. Annals of Behavioral Medicine. 33(3), 221-235.

Leventhal, L., Brisette, I. & Leventhal, H. (2003). The Common-Sense Model of Self-Regulation of Health and Illness. In L. Cameron, H. Leventhal, (Ed.). The Self-Regulation of Health and Illness Behaviour. (pp. 42-65). London: Routledge.

Lulu, R. A. & Alkaff, S. N. H. (2019). A Cross-Cultural Study of Persuasive Strategies in Relationship Advice Articles in Women’s Magazines. GEMA Online® Journal of Language Studies. 19(2), 15-32.

Lyons, A. (2000). Examining media representations: Benefits for health psychology. Journal of Health Psychology. 5(3), 349-358.

Macdonald, S., Cunningham, Y., Patterson, C., Robb, K., Macleod, U., Anker, T. & Hilton, S. (2018). Mass media and risk factors for cancer: The under-representation of age. BMC Public Health. 18, 490. https://doi.org/ 10.1186/s12889-018-5341-9

Maguire, M. & Delahunt, B. (2017). Doing a thematic analysis: A practical, step-by-step guide for learning and teaching scholars.. All Ireland Journal of Higher Education. 9(3). https://ojs.aishe.org/index.php/aishe-j/article/view/335/553

Matthews, P.H. (2014). The Concise Oxford Dictionary of Linguistics (3rd ed). Oxford, UK: Oxford University Press.

McGannon, K.R., Berry, T.R., Rodgers, W.M. & Spence, J.C. (2016). Breast cancer representations in Canadian news media: a critical discourse analysis of meanings and the implications for identity. Qualitative Research in Psychology. 13(2), 188-207. https://doi.org/10.1080/14780887.2016.1145774

McQueen, A., Kreuter, M.W., Kalesan, B. & Alcaraz, K.I. (2011). Understanding narrative effects: the impact of breast cancer survivor stories on message processing, attitudes, and beliefs among African American women. Health Psychology. 30(6), 674-682. https://doi.org/10.1037/a0025395

Mugerwa, S. & Holden, J. D. (2012). Writing therapy: A new tool for general practice?. The British Journal of General Practice: The Journal of The Royal College Of General Practitioners. 62(605), 661-663. https://doi.org/10.3399/bjgp12X659457

National Cancer Society Malaysia. (2015). Types of Cancer. Retrieved from NCSM website: http://www.cancer.org.my/quick-facts/types-cancer/

O’Hanlon, C.E. (2019). What kills us and what moves us: A comparative discourse analysis of heart disease and breast cancer. Digital Health. 5, 1-7.

O'Neill, B., Ziebland, S., Valderas, J. & Lupiáñez-Villanueva, F. (2014). User-generated online health content: A survey of Internet users in the United Kingdom. Journal of Medical Internet Research. 16(4). e118. htpps://doi.org/10.2196/jmir.3187

Parsa, P., Kandiah, M., Mohd Zulkefli, N.A. & Rahman, H.A. (2008). Knowledge and behavior regarding breast cancer screening among female teachers in Selangor, Malaysia. Asian Pacific Journal of Cancer Prevention. 9(2), 221-227.

Pennebaker, J.W. & Seagal, J.D. (1999). Forming a story: The health benefits of narratives. Journal of Clinical Psychology. 55(10), 1243-1254.

Potter, J. & Wetherell, M. (1987). Discourse and Social Psychology: Beyond Attitudes and Behaviour. London: Sage.

Raja, L.R., Siti Meriam, B., Rohaizak, M., Subahan, M.M. & Nabishah, M. (2016). Determining the specific learning needs of women with breast cancer prior to developing a breast cancer education package. Malaysian Journal of Public Health Medicine. 16(3), 284-294.

Ringer, A. (2013). Listening to patients: A study of illness discourses, patient identities, and user involvement in contemporary psychiatric practice. (Unpublished doctoral dissertation). University of Roskilde, Trekroner, Denmark.

Sandelowski, M. (1991). Telling stories: Narrative approaches in qualitative research. Journal of Nursing Scholarship. 23(3), 161-166. https://doi.org/10.1111/j.1547-5069.1991.tb 00662.x

Schildhauer, P. (2015). “I'm not an expert”: Lay knowledge, its construction and dissemination in personal weblogs. In M. Bondi, S. Cacchiani, & D. Mazzi (Eds.), Knowledge dissemination in and through the media: Recontextualizing and reconceptualizing expert discourse (pp. 264-289). United Kingdom: Cambridge Scholars Publishing.

Stubbs, B., Binnekade, T., Eggermont, L., Sepehry, A.A., Patchay, S. & Schofield, P. (2014). Pain and the risk for falls in community-dwelling older adults: Systematic review and meta-analysis. Physical Medicine and Rehabilitation. 95(1), 175-187.

Thurnherr, F., Rudolf von Rohr. M.T. & Locher, M.A. (2016). The functions of narrative passages in three written online health contexts. Open Linguistics, 2, 450-470.

Turkle, S. (1999). Cyberspace and identity. Contemporary Sociology. 28(6), 643-648.

Welch, V., Petkovic, J., Pardo Pardo, J., Rader, T. & Tugwell, P. (2016). Interactive social media interventions to promote health equity: An overview of reviews. Health Promotion and Chronic Disease Prevention in Canada : Research, Policy and Practice. 36(4), 63-75.

Wodak, R. (2006). Medical discourse: Doctor–patient communication. Encyclopedia of Language & Linguistics. 681-687. https://doi.org/10.1016/b0-08-044854-2/02346-4

Wodak, R. & Reisigl, M. (2015). Discourse and Racism. In D, Tannen, H.E. Hamilton, and D. Schiffrin, (Eds.). The Handbook of Discourse Analysis (pp. 576-596). West Sussex, UK: John Wiley & Sons.

Wong, D.K.K. & Cheung, M.K. (2019). Online health information seeking and e-health literacy among patients attending a primary care clinic in Hong Kong: A cross-sectional survey. Journal of Medical Internet Research, 21(3), e10831.

Yip, C.H., Pathy, N.B. & Teo, S.H. (2014). A review of breast cancer research in Malaysia. Medical Journal of Malaysia. 69, 8-22.

Ziebland, S. & Wyke, S. (2012). Health and illness in a connected world: How might sharing experiences on the internet affect people’s health? Milbank Quarterly. 90(2), 219-249.




DOI: http://dx.doi.org/10.17576/gema-2019-1904-02

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