Understanding the urgent and emergency care navigation work undertaken by people with cancer and their informal caregivers: a conceptually framed scoping review

Background People with cancer frequently use urgent and emergency care. Reviews of research have focussed on the incidence and predictors of service use in this population, rather than how people make decisions about which service to access. Understanding what factors influence these choices will inform ways in which we might enable people with cancer to effectively access services. Aims (1) Describe research undertaken about choices made by people with cancer about routes to access urgent and emergency care; (2) characterise decisions made by patients and informal caregivers to use certain services, with specific reference to work involved in navigating access; and (3) identify research priorities. Methods Scoping review of qualitative and mixed methods studies. Electronic database searches (AMED, CINAHL, Embase, MEDLINE, PsycInfo) and ‘berrypicking’ identified 18 papers. Study, participant, and service characteristics were mapped, and Turnbull et al.’s Model of Urgent Care Help-seeking informed a directed qualitative content analysis. Results Studies have involved people with advanced cancer to the relative exclusion of people with curable disease, receiving anticancer treatment, and who are multi-morbid. Six subcategories of navigation work were identified: (1) making decisions with, and seeking help from, specialists, (2) seeking safety, (3) positioning to access desired treatment, (4) negotiating tortuous pathways to help, (5) making decisions in collaboration with caregivers, and (6) managing isolation from services and social networks. Conclusion There are significant knowledge gaps and a need for more research, particularly studies of how different patient groups prepare for potential deterioration and make sense of systems of urgent and emergency care.