“How I kept track of it of course was my business”: Cancer patient self-monitoring as self-stylized work

Self-monitoring behaviors of cancer patients benefit patients, caregivers, and providers, and yet the phenomenon of self-monitoring from the cancer-patient perspective has not been studied. We examined cancer patients' self-monitoring preferences and practices, focusing on the meaning of self-monitoring within the cancer experience. Semi-structured interviews were conducted among adult cancer patients who had been seen at least once at a rural United States cancer center. Questions sought out the meaning of self-monitoring and its practical aspects. Qualitative data were analyzed by adapting the four-stepped method by Giorgi for empirical phenomenological analysis. Twenty participants were interviewed (11 women and 9 men). Transcribed interviews revealed that cancer patient self-monitoring is self-stylized work that ranges from simple to complex, while being both idiosyncratic and routine. Participants reported using tools with systems for use that fit their distinctive lives for the purpose of understanding and using information they deemed to be important in their cancer care. Three conceptual categories were discerned from the data that help to elucidate this self-stylized work as fitting their individual priorities and preferences, reflecting their identities, and being born of their work lives. Findings highlight patients' unique self-monitoring preferences and practices, calling into question the assumption that the sole use of standardized tools are the most effective approach to engaging patients in this practice. Self-monitoring efforts can be validated when providers welcome or adapt to patients' self-stylized tools and systems. Doing so may present opportunity for improved communications and patient-centered care.