“You need to speak up”: Agency in the cancer pre-diagnosis phase

Abstract

This study analyzes patient agency within the cancer pre-diagnosis phase: the space between the onset of concerning symptoms but before a positive or negative diagnosis is received. Through two phases of data collection, fifty-five interviews were conducted with people who had gone through a cancer diagnosis process. Interview transcripts were analyzed using thematic analysis. Thematic analysis revealed that patients illustrated four tenets of human agency: intentionality, forethought, self-reactiveness, and self-reflectiveness. Patients expressed agency by accelerating testing timelines, seeking out medical information, and advocating for further testing. There were notable agency constraints when healthcare providers did not communicate pertinent information. Additionally, some patients intentionally chose to be passive or regretted past passive behaviors. These findings enhance understanding of agency expressions in the pre-diagnosis phase.