What Do Patients and Their Carers Do to Support the Safety of Cancer Treatment and Care? A Scoping Review

Cancer patients and their carers face a multitude of challenges in the treatment journey; the full scope of how they are involved in promoting safety and supporting resilient healthcare is not known. OBJECTIVE: The study aimed to undertake a scoping review to explore, document, and understand existing research, which explores what cancer patients and their carers do to support the safety of their treatment and care. DESIGN: This scoping review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines. Five online databases were searched from 2000 to 2021 to identify primary literature exploring perspectives on patient and caregiver involvement in maintaining their safety during cancer care. Narrative synthesis was then conducted on the included literature. RESULTS: Of the 1582 results generated from the initial search, 16 studies were included in the review. Most consisted of qualitative semistructured interviews with patients, as well as carers and healthcare professionals (HCP). Four narrative themes were identified: patient perception of safety and their involvement; patients take charge of their own care and well-being; safety as a dynamic collective responsibility; and carers are an undersupported asset. Patients and their carers involve themselves in a variety of behaviors in physical care, well-being, communication, and care coordination to ensure safety and support system resilience. This review adds a novel perspective on cancer patient and caregiver involvement in supporting resilient healthcare. CONCLUSIONS: Patients and their carers play an important role in promoting safe cancer care and healthcare system resilience. Further research is recommended to realize the full extent of the system gaps encountered and mediated by patients and their carers.