How Do People Living With Cancer Navigate Health Systems?: A Multi-Grounded Theory.

Abstract

Background: Cancer and its physiological and psychological effects are well defined, but how these factors impact health system navigation for people living with cancer (PLWC) is lacking.

Objective: To develop a theory explaining how PLWC navigate health systems to meet their health and well-being needs.

Methods: This study used multi-grounded theory to explain how PLWC navigate health systems to meet their needs. Individuals more than 6 months postdiagnosis participated in semistructured interviews. The theory was grounded with the Health Beliefs Model and Socioecological Model to generate a candidate theory.

Results: Eighteen participants were interviewed (n = 12 female); the most prominent cancer type was breast (50%). The theory comprised 5 components describing how PLWC navigate health services: (1) "being on the journey" referenced a core care team and differing utilization over time; (2) "adjusting to a new identity" addressed feeling lost and isolated and a desire to be around people who have experienced cancer; (3) "assimilating knowledge" included knowledge about cancer, timing, and source of information; (4) "navigating the health system" found health-seeking attitudes and behaviors dictated whether services were accessed; and (5) "policy environment" acknowledged how policy set the context within which all theory components exist.

Conclusions: The candidate theory depicts core factors influencing how PWLC navigate health and well-being services over their cancer journey and into survivorship.

Implications for practice: The theory identifies factors that influence access to healthcare, including trust and knowledge, which can form the basis of navigational initiatives and programs.