It doesn’t make sense, but we do: framing disease in an online metastatic breast cancer support community
https://doi.org/10.4081/qrmh.2019.7007
Accepted: 11 July 2019
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.
Using Weick’s sensemaking as a conceptual framework to investigate online discussions between members of a Facebook group of metastatic breast cancer patients, and using thematic analysis to examine textual threads between group members, this research examines participants’ framing of cancer survivorship. Participants in peer-to-peer disease support groups, which are not led by medical experts, communicate differently among themselves in order to cope with chronic and terminal illness. Perceptions of survivorship of late stage patients versus early stage patients differ for a variety of reasons, with late stage patients understanding their illness trajectory more often as chronic and declining. This analysis identified three properties of sensemaking used by members to manage their disease: identity, retrospective, and enactment. Results indicate that peer-to-peer online support group communication engenders distinct framing logics that members draw upon for group support as they manage a chronic and terminal disease.
Czarniawska-Joerges B. A narrative approach to organization studies. Thousand Oaks, CA: Sage; 1998. DOI: https://doi.org/10.4135/9781412983235
Weick KE. Sensemaking in organizations. Thousand Oaks, CA: Sage Publications; 1995.
Mullan F. Seasons of survival: reflections of a physician with cancer. New Engl J Med 1985;313:270-3. DOI: https://doi.org/10.1056/NEJM198507253130421
Sontag S. Illness as metaphor. London: Penguin Books; 2002.
American Cancer Society. Breast cancer facts and figures 2005-2006. Atlanta: American Cancer Society; 2005. Available from: https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/breast-cancer-facts-and-figures/breast-cancer-facts-and-figures-2005-2006.pdf
American Cancer Society. Breast cancer facts and figures 2017-2018. Atlanta: American Cancer Society; 2017. Available from: https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/breast-cancer-facts-and-figures/breast-cancer-facts-and-figures-2017-2018.pdf
Kaiser K. The meaning of the survivor identity for women with breast cancer. Soc Sci Med 2008;67:79-87. DOI: https://doi.org/10.1016/j.socscimed.2008.03.036
Helgeson VS. Survivor centrality among breast cancer survivors: implications for well-being. Psycho-Oncol 2011;20:517-24. DOI: https://doi.org/10.1002/pon.1750
Ussher J, Kirsten L, Butow P, Sandoval M. What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer. Soc Sci Med 2006;62:2565-76. DOI: https://doi.org/10.1016/j.socscimed.2005.10.034
Preece J. Sociability and usability in online communities: determining and measuring success. Beh Inform Tech 2001;20:347-56. DOI: https://doi.org/10.1080/01449290110084683
Sillence E. Giving and receiving peer advice in an online breast cancer support group. Cyberpsych Beh Soc N 2013;16:480-5. DOI: https://doi.org/10.1089/cyber.2013.1512
Wright KB. Communication in health-related online social support groups/communities: a review of research on predictors of participation, applications of social support theory, and health outcomes. Rev Commun Res 2016:4;65-87.
Sharf BF. Communicating breast cancer on-line: support and empowerment on the Internet. Women Health 1997;26:65-84. DOI: https://doi.org/10.1300/J013v26n01_05
Oh HJ, Lee B. The effect of computer-mediated social support in online communities on patient empowerment and doctor–patient communication. Health Commun 2012;27:30-41. DOI: https://doi.org/10.1080/10410236.2011.567449
Sandaunet A-G. A space for suffering? communicating breast cancer in an online self-help context. Qual Health Res 2008;18:1631-41. DOI: https://doi.org/10.1177/1049732308327076
Frank AW. The wounded storyteller: body, illness, and ethics. Chicago: University of Chicago Press; 2013.
Bar-Lev S. “We are here to give you emotional support”: performing emotions in an online HIV/AIDS support group. Qual Health Res 2008;18:509-21. DOI: https://doi.org/10.1177/1049732307311680
Rier DA. Internet social support groups as moral agents: the ethical dynamics of HIV status disclosure. Sociol Health Ill 2007;29:1043-58. DOI: https://doi.org/10.1111/j.1467-9566.2007.01023.x
Coulson NS, Buchanan H, Aubeeluck A. Social support in cyberspace: a content analysis of communication within a Huntingtons disease online support group. Patient Educ Couns 2007;68:173-8. DOI: https://doi.org/10.1016/j.pec.2007.06.002
Shim M, Cappella JN, Han JY. How does insightful and emotional disclosure bring potential health benefits? study based on online support groups for women with breast cancer. J Commun 2011;61:432-54. DOI: https://doi.org/10.1111/j.1460-2466.2011.01555.x
Vilhauer RP. ‘Them’ and ‘us’: The experiences of women with metastatic disease in mixed-stage versus stage-specific breast cancer support groups. Psychol Health 2011;26:781-97. DOI: https://doi.org/10.1080/08870446.2010.496853
Kingod N, Cleal B, Wahlberg A, Husted GR. Online peer-to-peer communities in the daily lives of people with chronic illness. Qual Health Res 2016;27:89-99. DOI: https://doi.org/10.1177/1049732316680203
Weick KE. Enacted sensemaking in crisis situations. J Manag Stud 1988;25:305-17. DOI: https://doi.org/10.1111/j.1467-6486.1988.tb00039.x
Schutz A, The phenomenology of the social world. New York: Northwestern University Press; 1967.
Landqvist M. Sense and sensibility – Online forums as epistemic arenas. Discourse Context Media 2016;13:98-105. DOI: https://doi.org/10.1016/j.dcm.2016.05.007
Schwandt TA. Qualitative inquiry: a dictionary of terms. Thousand Oaks, CA: Sage; 1997.
Elo S, Kyngas H. The qualitative content analysis process. J Adv Nurs 2008;62:107-15. DOI: https://doi.org/10.1111/j.1365-2648.2007.04569.x
Bury M. Chronic illness as biographical disruption. Sociol Health Illn 1982;4:167-82. DOI: https://doi.org/10.1111/1467-9566.ep11339939
Erez M, Earley PC. Culture, self-identity, and work. New York: Oxford University Press; 1993. DOI: https://doi.org/10.1093/acprof:oso/9780195075809.001.0001
Poole MS, Angle HL, Van de Ven AH, eds. Research on the management of innovation: the Minnesota studies. New York: Harper & Row; 1989.
Starbuck WH, Nystrom PC. Why the world needs organizational design. Org Industr Dev 1982;6:3-17.
Winokur J. Zen to go. New York: New American Library; 1989.
Strauss AL. The social psychology of George Herbert Mead. Chicago: University of Chicago Press; 1962.
Lincoln IS. Organizational theory and inquiry: the paradigm revolution. Beverly Hills: Sage Publications; 1985. pp 106-136.
Follett MP. Creative experience. New York: Longmans, Green; 1930. DOI: https://doi.org/10.1037/14781-000
Mathieson CM, Stam HJ. Renegotiating identity: cancer narratives. Sociol Health Illn 1995;17:283-306. DOI: https://doi.org/10.1111/1467-9566.ep10933316
Kaufman S, Whitehead KA. Producing, ratifying, and resisting support in an online support forum. Health (London) 2018;22:223-39. DOI: https://doi.org/10.1177/1363459315628043
PAGEPress has chosen to apply the Creative Commons Attribution NonCommercial 4.0 International License (CC BY-NC 4.0) to all manuscripts to be published.
Downloads
Citations
