Practicing patienthood online: Social media, chronic illness, and lay expertise

Societies

Volumn 4, Issue 2, 2014, Pages 316-329

  Sosnowy, Collette ^a  

^a CITY UNIVERSITY OF NEW YORK   (United States)

Author keywords

Blogging; Health 2.0; Multiple Sclerosis; Qualitative research; Social media

Indexed keywords

EID: 84977966465     PISSN: None     EISSN: 20754698     Source Type: Journal    
DOI: 10.3390/soc4020316     Document Type: Article

References (47)

1. Bar-Lev, S. ―We are here to give you emotional support‖: Performing emotions in an online HIV/AIDS support group. Qual. Health Res. 2008, 18, 509–521.
2. Han, J.Y.; Shaw, B.R.; Hawkins, R.P.; Pingree, S.; Mctavish, F.; Gustafson, D.H. Expressing positive emotions within online support groups by women with breast cancer. J. Health Psychol. 2008, 13, 1002–1007.
3. Høybye, M.T.; Johansen, C.; Tjørnhøj-Thomsen, T. Online interaction. Effects of storytelling in an Internet breast cancer support group. Psychooncology 2005, 14, 211–220.
4. Keim-Malpass, J.; Steeves, R.H. Talking with death at a diner: Young women‘s online narratives of cancer. Oncol. Nurs. Forum 2012, 39, 373–378.
5. Orgad, S. The transformative potential of online communication: The case of breast cancer patients‘ Internet spaces. Fem. Media Stud. 2005, 5, 141–161.
6. Pitts, V. Illness and Internet empowerment: Writing and reading breast cancer in cyberspace. Health Interdiscip. J. Soc. Stud. Health Illn. Med. 2004, 8, 33–59.
7. Sandaunet, A.-G. A space for suffering? Communicating breast cancer in an online self-help context. Qual. Health Res. 2008, 18, 1631–1641.
8. Barak, A.; Boniel-Nissim, M.; Suler, J. Fostering empowerment in online support groups. Comput. Hum. Behav. 2008, 24, 1867–1883.
9. Josefsson, U. Coping with illness online: The case of patients‘ online communities. Inf. Soc. 2005, 21, 133–153.
10. McBride, D. Cancer survivors find blogging improves quality of life. ONS Connect 2011, 26, 20.
11. Vilhauer, R.P. Perceived benefits of online support groups for women with metastatic breast cancer. Women Health 2009, 49, 381–404.
12. Miller, E.A.; Pole, A. Diagnosis blog: Checking up on health blogs in the blogosphere. Am. J. Public Health 2010, 100, 1514–1519.
13. Fox, S. The Social Life of Health Information; Pew Internet & American Life Project: Washington, DC, USA, 2011.
14. Wathen, C.N.; Harris, R.M. ―I try to take care of it myself.‖ How rural women search for health information. Qual. Health Res. 2007, 17, 639–651.
15. Harris, R.; Wathen, N.; Fear, J. Searching for health information in rural Canada. Where do residents look for health information and what do they do when they find it. Inf. Res. 2006, 12, Paper 274. Available online: http://www.informationr.net/ir/12-1/paper274.html (accessed on 11 June 2014).
16. Kivits, J. Everyday health and the Internet: A mediated health perspective on health information seeking. Sociol. Health Illn. 2009, 31, 673–687.
17. Crooks, V.A. ―I go on the Internet; I always, you know, check to see what‘s new‖: Chronically ill women‘s use of online health information to shape and inform doctor-patient interactions in the space of care provision. ACME Int. E-J Crit. Geogr. 2006, 5, 50–69.
18. Barker, K.K. Electronic support groups, patient-consumers, and medicalization: The case of contested illness. J. Health Soc. Behav. 2008, 49, 20–36.
19. Ziebland, S.; Wyke, S. Health and illness in a connected world: How might sharing experiences on the Internet affect people‘s health? Milbank Q. 2012, 90, 219–249.
20. Conrad, P.; Stults, C. The internet and the experience of illness. In Handbook of Medical Sociology; Bird, C.E., Conrad, P., Fremont, A.M., Eds.; Vanderbilt University Press: Nashville, TN, USA, 2010; pp. 179–191.
21. Fox, S. Mind the Gap: Peer to Peer Healthcare; Pew Internet and American Life Project: Washington, DC, USA, 2011. Available online: http://www.pewinternet.org/Reports/2011/20-Mind-the-Gap/Part-1.aspx (accessed on 2 February 2012).
22. Sarasohn-Kahn, J. The Wisdom of Patients: Health Care Meets Online Social Media. Ihealth Reports. California HealthCare Foundation; April 2008. Available online: http://www.chcf.org/topics/chronicdisease/index.cfm?itemID=133631 (accessed on 11 June 2014).
23. Mazanderani, F.; O‘Neill, B.; Powell, J. ―People power‖ or ―pester power‖? YouTube as a forum for the generation of evidence and patient advocacy. Patient Educ. Couns. 2013, 93, 420–425.
24. Henwood, F.; Wyatt, S.; Hart, A.; Smith, J. ―Ignorance is bliss sometimes‖: Constraints on the emergence of the ―informed patient‖ in the changing landscapes of health information. Sociol. Health Illn. 2003, 25, 589–607.
25. Cline, R.J.W.; Haynes, K.M. Consumer health information seeking on the Internet: The state of the art. Health Educ. Res. 2001, 16, 671–692.
26. Demiris, G. The diffusion of virtual communities in health care: Concepts and challenges. Patient Educ. Couns. 2006, 62, 178–188.
27. Salmon, P.; Hall, G.M. Patient empowerment or the emperor‘s new clothes. J. R. Soc. Med. 2004, 97, 53–56.
28. Foucault, M. Power/Knowledge: Selected Interviews and Other Writings, 1972–1977; Gordon, C., Ed.; Pantheon Books: New York, NY, USA, 1980.
29. Rose, N. Inventing Our Selves: Psychology, Power, and Personhood; Cambridge University Press: Cambridge, UK, 1998.
30. Eytan, T. The Health 2.0 Definition: Not Just the Latest, the Greatest! Ted Eytan MD E-Health Patient Empower Divers. 2008. Available online: http://www.tedeytan.com/2008/06/13/1089 (accessed on 21 January 2013).
31. Levina, M. Our data, ourselves: Feminist narratives of empowerment in Health 2.0 discourse. In Cyberfeminism 2.0; Oh, Y.J., Gajjala, R., Eds.; Peter Lang Publishing: New York, NY, USA, 2012; First printing.
32. Rose, N.; Novas, C. Biological citizenship. In Global Assemblages: Technology, Politics and Ethics as Anthropological Problems; Ong, A., Collier, S., Eds.; Blackwell: London, UK, 2005; pp. 439–463.
33. Kopelson, K. Writing patients‘ wrongs: The rhetoric and reality of information age medicine. J. Adv. Compos. 2009, 29, 353–404.
34. Ziebland, S. The importance of being expert: The quest for cancer information on the Internet. Soc. Sci. Med. 2004, 59, 1783–1793.
35. Rothman, S.M.; Raveis, V.H.; Friedman, A.; Rothman, D.J. Health advocacy organizations and the pharmaceutical industry: An analysis of disclosure practices. Am. J. Public Health 2011, 101, 602–609.
36. Orgad, S. The cultural dimensions of online communication: A study of breast cancer patients‘ Internet spaces. New Media Soc. 2006, 8, 877.
37. Hutchinson, R. Dangerous liaisons? Ethical considerations in conducting online sociological research. In Proceedings of the TASA 2001 Conference: The Australian Sociological Association, The University of Sydney, Sydney, Australia, 13–15 December 2001. Available online: http://www.tasa.org.au/docs/conferences/2001_12/031201%20Hutchinson.pdf (accessed on 11 June 2014).
38. Sudweeks, F.; Rafaeli, S. How do you get a hundred strangers to agree? Computer-mediated communication and collaboration. In Computer Networking and Scholarship in the 21st Century; Harrison, T.M., Stephen, T.D., Eds.; University of New York SUNY Press: Albany, NY, USA, 1995.
39. Walther, J.B. Research ethics in Internet-enabled research: Human subjects issues and methodological myopia. Ethics Inf. Technol. 2002, 4, 205–216.
40. Elgesem, D. What is special about the ethical issues in online research? Ethics Inf. Technol. 2002, 4, 195–203.
41. King, S. Researching Internet communities: Proposed ethical guidelines for the reporting of results. Inf. Soc. 1996, 12, 119–127.
42. Scharf, B. Beyond netiquette: The ethics of doing naturalistic discourse research on the Internet. In Doing Internet Research; Jones, S., Ed.; SAGE Publications: London, UK, 1999.
43. Waskul, D.; Douglas, M. Considering the electronic participant: Some polemical observations on the Ethics of on-line research. Inf. Soc. 1996, 12, 129–139.
44. Altheide, D. Ethnographic Content Analysis: Working Draft. Available online: http://www.public.asu.edu/~atdla/ecadraft.html (accessed on 2 June 2014).
45. Glaser, B.; Strauss, A. The Discovery of Grounded Theory: Strategies for Qualitative Research; Aldine Transaction: Piscataway, NJ, USA, 1967.
46. Charmaz, K. Constructing Grounded Theory: A Practical Guide through Qualitative Analysis, 1st ed.; Sage Publications: Thousand Oaks, CA, USA, 2006.
47. Ehrenreich, B.; English, D. For Her Own Good: 150 Years of the Experts’ Advice to Women; Anchor Press: Garden City, NY, USA, 1978.