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

Abstract

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.

Who responds? An examination of response rates to a national postal survey of Aboriginal and Torres Strait Islander adults, 2018-2019

“…There was higher uptake of the online survey completion option by younger age groups compared with older age groups, which is also consistent with a recent qualitative study of Indigenous Australians that suggested older participants prefer paper surveys to online. (24) Explanations of non-response are likely to encompass commonly known barriers in Indigenous health research. Indigenous people have described these, including: a history of exploitative research;…”

Measuring Health Care Experiences that Matter to Indigenous People in Australia with Cancer: Identifying Critical Gaps in Existing Tools

“…Many challenges exist in the delivery of high quality cancer care in Australia's health system, due to the fragmented nature of cancer services, the length and logistical demands of treatment and sensitivity around diagnosis (15). Focusing on the care experiences of Indigenous people may illuminate issues previously reported as problematic, such as trust and engagement in the health system, (13,15) and facilitate understanding of patients' perspectives in order to guide improvements in care and health outcomes (3,8).…”

“…Cultural aspects of life are central to Indigenous world views (17,18) and are commonly prioritised above treatment outcomes (19), which contrasts with the disease-oriented approach of the biomedical system. Patient experience measurement instruments may not re ect the world views and priorities of Indigenous people (15), as has been shown regarding supportive care needs (20), health related quality of life (21), wellbeing (22) and social and emotional wellbeing (23). Although there may be some aspects of existing standard measures that are relevant to Indigenous people, their use for Indigenous people presumes common de nitions, values, needs and perceptions of health; a presumption which is often inappropriate (20)(21)(22)(23)(24).…”

“…Privileging the voices of Indigenous peoples is an important rst step to understanding their experiences of care. In the rst phase of this program of work, we conducted qualitative interviews with Indigenous people affected by cancer and health care providers, to identify aspects of cancer care that were critical in shaping the patient experience for Indigenous people with cancer (15). Several key themes were identi ed as central: feeling safe in the system; the importance of Indigenous care providers; barriers to care, particularly if receiving treatment away from one's own Country or traditional homelands (connection to Country re ects a spiritual, emotional and cultural relationship to land, central to Indigenous identity (18)); the role of family and friends; effective communication and education; the transition to primary care; carers' wellbeing; and palliative care.…”

“…The aim of this study was to assess the extent to which patient experience measures currently in use in Australia collect information about critical aspects of cancer care, as identi ed by Indigenous people affected by cancer and health care providers (15).…”