Patient Perceptions of Illness Identity in Cancer Clinical Trial Decision-Making

ABSTRACT

When patients are diagnosed with cancer, they begin to negotiate their illness identity in relation to their past and future selves, their relationships, and their group memberships. Thus, how patients view their cancer in relation to their other identities may affect how and why they make particular decisions about treatment options. Using the Communication Theory of Identity (CTI), the current study explores: (1) how and why illness identity is framed across identity layers in relation to one particular cancer treatment: participation in a cancer clinical trial (CT); and (2) how and why patients experience identity conflicts while making their treatment decisions. Semi-structured, in-depth interviews were analyzed for 46 cancer patients who were offered a CT. Results of a grounded theory analysis indicated that patients expressed separate identity frames (e.g., personal, relational, and communal), aligned identity frames (e.g., personal and communal), and identity conflicts (e.g., personal-personal). This study theoretically shows how and why patient illness identity relates to cancer treatment decision-making as well as how and why patients relate (and conflict) with the cancer communal identity frame. Practical implications include how healthcare providers and family members can support patient decision-making through awareness of and accommodating to identity shifts.

Acknowledgments

The authors are grateful for the contributions made by Tricia Hengehold, Kevin Kramer, and David Gatorano, patients, clinic staff, Columbus CCOP, and The Appalachian Community Cancer Network (ACCN). We are also grateful for the mentorship of Nancy E. Schoenberg, PhD, University of Kentucky Department of Behavioral Science, and Electra D. Paskett, PhD, The Ohio State University College of Medicine.

Funding

This study was supported by Grant Number U54 CA153604 from the National Cancer Institute to the University of Kentucky (Mark Dignan, Principal Investigator).

Notes

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Additional information

Funding

This study was supported by Grant Number U54 CA153604 from the National Cancer Institute to the University of Kentucky (Mark Dignan, Principal Investigator).