Aboriginal experiences of cancer and care coordination: Lessons from the Cancer Data and Aboriginal Disparities (CanDAD) narratives

Abstract

Background: Aboriginal people with cancer experience worse outcomes than other Australians for a range of complex and interrelated reasons. A younger age at diagnosis, higher likelihood of more advanced cancer or cancer type with poorer prognosis, geographic isolation and cultural and language diversity mean that patient pathways are potentially more complex for Aboriginal people with cancer. In addition, variation in the quality and acceptability of care may influence cancer outcomes. Objective: This study sought to understand how care coordination influences Aboriginal people's experiences of cancer treatment. Methods: Interviews with 29 Aboriginal patients or cancer survivors, 11 carers and 22 service providers were carried out. Interviews were semi-structured and sought to elicit experiences of cancer and the health-care system. The manifest content of the cancer narratives was entered onto a cancer pathway mapping tool and underlying themes were identified inductively. Results: The practice of cancer care coordination was found to address the needs of Aboriginal patients and their families/carers in 4 main areas: “navigating the health system”; “information and communication”; “things to manage at home”; and “cultural safety”. Conclusions: The CanDAD findings indicate that, when the need for cancer care coordination is met, it facilitated continuity of care in a range of ways that may potentially improve cancer outcomes. However, the need remains unmet for many. Findings support the importance of dedicated care coordination to enable Aboriginal people to receive adequate and appropriate patient-centred care, so that the unacceptable disparity in cancer outcomes between Aboriginal and non-Aboriginal people can be addressed.