Understanding Indigenous Australians' experiences of cancer care: stakeholders' views on what to measure and how to measure it

BackgroundDisparities in cancer outcomes amongst Indigenous Australians reflect a pattern of reduced access to and engagement with health services. A growing emphasis on patient-centred care has increased efforts to measure patient experiences, but it is unclear whether existing approaches: a) assess the most critical aspects of care that shape the experiences of Indigenous people with cancer; and b) facilitate the engagement and participation of Indigenous people with the measurement of care experiences.MethodsTwo rounds of semi-structured interviews and focus groups were used to elicit stakeholders' views on priorities for measuring the cancer care experiences of Indigenous cancer patients and on the acceptability of various methods for capturing such information. Participants included Indigenous people affected by cancer (n=17), health professionals (n=28) and individuals in both groups (n=7). Recruitment occurred through a national web-based network and through four cancer services in urban and regional areas in three jurisdictions across Australia.ResultsSeveral aspects of cancer care were identified as critical in shaping Indigenous patients' experiences. Key themes included: feeling safe in the system; importance of Indigenous staff; barriers to care; the role of family and friends; effective communication and education; and coordination of care and transition between services. Those participants affected by carers' wellbeing and palliative care strongly advocated for the importance of these topics. Participants expressed support for a face-to-face interview with a trusted person as the most appropriate means of collecting cancer care experience information.ConclusionsWhile existing experience measurement tools would partially capture some important aspects of care, other critical areas would likely be missed. Appropriate tools and approaches, developed by and with Indigenous people, are urgently needed to determine the extent to which health services are meeting the needs of Indigenous people with cancer, and to identify areas for action to improve these services.