Dealing with Discontinuity in Cancer Care Trajectories: Patients’ Solutions

Abstract

Introduction: Patients with cancer require specialized care from different care providers, challenging continuity of care in terms of information, relationships, and/or management. The recognition of discontinuity of care has led to different initiatives by the healthcare system over the years. Yet, making use of the theory on boundary objects and brokers, this research explores the active role of patients themselves in resolving discontinuity along their care trajectories. Methods: Semi-structured interviews were conducted with 33 patients to unravel the discontinuities that they experience and their attempts to resolve these. Interview data were analyzed using directed-content analysis informed by concepts from boundary crossing literature (i.e., data were searched for potential boundary objects and brokers). Results: To re-establish continuity of care, patients actively use the objects and people provided by the healthcare system when these meet their needs. Patients also introduce own objects and people into the care trajectory. As such, information and management discontinuity can typically be resolved. Relational continuity appears to be more difficult to resolve, in some cases leaving patients to take drastic measures, such as changing care providers. Discussion: The use of boundary crossing theory in improving care from a patient perspective is relatively novel. When patients and providers together address the objects and people that support establishing continuity of care, a continuous care process may be encouraged. We advocate an integrated approach, rather than provider or healthcare system initiatives exclusively, to patient care and continuity.