Walking Each Other Home: Sensemaking of Illness Identity in an Online Metastatic Cancer Community
Doctor of Philosophy (Ph.D.)
Degree Granting Department
Jane Jorgenson, Ph.D.
Ambar Basu, Ph.D.
Keith Berry, Ph.D.
Sara Green, Ph.D.
autoethnography, breast cancer, narrative, sensemaking, support, survivor, online
Increasingly, online settings serve as primary social contexts for patient interaction, playing a crucial role in ways participants access medical information and turn to each other for support. Stage IV (metastatic) cancer patients like myself know what it is like to be overwhelmed by the complex array of medical tests, treatments, and information we are expected to assimilate. My late stage disease status necessitates I routinely grapple with not merely the kinds of support I think I need or how those needs will be met, but also what meanings I assign to my experiences. Consequently, as a member of The Living Room (TLR), an online support group for metastatic breast cancer patients, I benefit from cyber-mediated connectivity with fellow patients who share many of the same psychosocial and informational needs. Because metastatic breast cancer (MBC) patients have different needs and communicate differently among themselves in online spaces, I conducted an ethnographic study of an online MBC community to study ways that patients make sense of and frame their disease, thus narrating their disease identity and survivorship. I used Weick’s concepts of sensemaking as conceptual lenses and thematic analysis as a method to examine a variety of narrative and textual threads between members on TLR. I found that TLR’s group ecology was organized around the concept of ‘shared values, shared support,’ that TLR provided a platform for MBC patients to receive and give support from/to others who shared similar experiences, and that MBC patients negotiated a tension between the needs for social support and for distance from thoughts of cancer and terminal illness. In identifying the ways that MBC patients frame and make sense of their experiences in an online community, this project contributes to our understanding and appreciation of the improvisational nature of illness and identity construction. This project also helps those living with MBC to manage the uncertainty of our disease and serves as a resource for clinicians who wish to learn more about patients’ subjective experiences of their identities and illness.
Scholar Commons Citation
Anderson, Ariane B., "Walking Each Other Home: Sensemaking of Illness Identity in an Online Metastatic Cancer Community" (2019). USF Tampa Graduate Theses and Dissertations.