Seeking Precision Healthcare in Rural Patients With Cancer: Learning Self-advocacy

Abstract

Background Precision medicine initiatives are offering superior treatments for cancer, and equitable distribution of these care measures is desired. Gaining insight into the meanings and shared practices of individuals navigating a cancer diagnosis and treatment in a rural setting will help efforts to mitigate inequities in this domain. Objectives To (1) interpret individuals’ common meanings of a cancer diagnosis including what contributes to that meaning; (2) explicate the shared practices of individuals with cancer regarding accessing oncology care, including provider visits, testing, and treatments; and (3) interpret common understanding of testing and treatment options in individuals with cancer. Methods Using hermeneutic phenomenology, interviews with individuals who have cancer who may benefit from precision medicine initiatives and who live in a rural area were recorded, transcribed, and analyzed by the research team until common meanings arose from the narratives. Results Fifteen participants provided in-depth interviews. Three main themes and a constitutive pattern emerged: (1) “Slipping through the cracks,” (2) Traveling this distance: “Gee, is there something closer?” and (3) Evoking some resilience: “Hope is a powerful word.” The constitutive pattern was: “The necessity of practicing and developing advocacy.” Conclusions Access to care in the rural setting is a complex concept and includes challenges with receiving care at a distance, travel to larger cities for adequate care, and coordination of care from multiple providers. Implications for Practice Efforts toward providing advocacy in the healthcare setting, as well as developing ways to make access to specialized cancer care more readily available, are important steps toward mitigation of inequities in rural areas.