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

Abstract

BackgroundAboriginal 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.ObjectiveThis study sought to understand how care coordination influences Aboriginal people's experiences of cancer treatment.MethodsInterviews 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.ResultsThe 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”.ConclusionsThe 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.

Communication, Collaboration and Care Coordination: The Three-Point Guide to Cancer Care Provision for Aboriginal and Torres Strait Islander Australians

“…It can address fragmentation of care, poor communication between multiple providers, duplication of investigations and avoidable hospital readmissions [50]. When accessed, care coordination plays an important role in overcoming challenges patients may experience in accessing and engaging with the health system including cultural, social and practical barriers that often impede Indigenous patients' access to the health care system [1]. It helps participants engage earlier with the health system [51], is especially helpful for patients with complex cancer diagnoses and psychosocial needs and those requiring input from multiple health providers, and has assisted the transition of patients back into the community upon hospital discharge [1,50].…”

“…Indigenous Australians have higher age-standardised incidence and mortality rates for all cancers combined, are less likely to be hospitalised following a cancer diagnosis and are less likely to survive five years after diagnosis (48% vs. 59%) compared to other Australians [13,14]. These disparities are due to a range of complex and inter-related factors including but not limited to Indigenous people being diagnosed at a younger age and with more advanced cancer, higher number of co-morbidities [15], a reduced uptake of health services, and barriers to accessing health services [1,16]. Experiences related to an enduring legacy of colonization, forced removal of children, racism, discrimination and loss of identity are examples of issues that continue to impact on the health and well-being of Indigenous Australians [17].…”

Seldom heard voices: a meta-narrative systematic review of Aboriginal and Torres Strait Islander peoples healthcare experiences

“…Areas of weakness included a lack of clear statement of the aims of the research (12) which made it difficult to assess whether the research design and recruitment strategies were appropriate to address the aims of the research [ 30 – 41 ]. The majority of studies lacked consideration of the relationship between the researchers and research participants, with only seven studies commenting on this and potential resultant bias [ 42 – 48 ].…”

“…The impact of staff gender on experience was highlighted in eight studies [ 31 , 48 , 53 , 56 , 58 , 66 , 72 , 74 , 80 ]. The absence of gender specific hospital wards [ 66 , 72 , 74 ] and gender differences between patients and staff members (e.g.…”

Disparities in breast screening, stage at diagnosis, cancer treatment and the subsequent risk of cancer death: a retrospective, matched cohort of aboriginal and non-aboriginal women with breast cancer

“…The first is to continue to innovate in delivering screening to all women, particularly to Aboriginal and Torres Strait Islander women, with the aim of increasing uptake of BSSA invitations and ensuring the screening experience is as favourable as possible for Aboriginal and Torres Strait Islander women [16, 36]. This will include careful consideration of cultural appropriateness in screening activities [17, 37, 38]. The second may be to consider broadening active invitation to include Aboriginal and Torres Strait Islander women aged 40 to 49, since this group represented 25% of breast cancers detected in the cohort.…”