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.


| INTRODUC TI ON
The Cancer Data and Aboriginal Disparities (CanDAD) project was developed in response to the significant and increasing disparity in cancer mortality between Aboriginal and other Australians in South Australia (SA). 1,2 Studies conducted nationally indicate that the drivers of this disparity are likely to be varied and include a higher rate of exposure to risk factors including but not limited to smoking, lower uptake of cancer screening and higher rates of comorbidity. 1,3 Once diagnosed, Aboriginal people face challenges within the health system stemming from language diversity and differences, racism, poor interagency coordination, cultural misunderstandings, emotional and physical stress, travel, financial problems and isolation, which can make the experience of receiving treatment for cancer emotionally distressing, inefficient and potentially dangerous. [4][5][6][7] For several reasons, the treatment needs of Aboriginal people with cancer are often greater and more medically complex than those of their non-Aboriginal counterparts. Aboriginal people are more likely to be diagnosed with cancers with poorer prognosis. 8 Cancers of the liver, gallbladder, head and neck, oesophagus and lung are relatively more common among Aboriginal people, while melanoma, breast and prostate tumours are relatively less common. 9,10 These cancers are also commonly detected at later stages, more metastasized or disseminated cancer at diagnosis compared to non-Aboriginal people of the same age, sex and cancer type. 10,11 Added to this are complications from comorbid diabetes and other chronic diseases, which are more common in Aboriginal than non-Aboriginal patients. 1 Focusing on SA specifically, epidemiological analysis carried out for the CanDAD project has identified a range of disparities in outcomes that warrant consideration when tailoring health services to meet the needs of this population. For example, in line with national data, Aboriginal people are generally younger when diagnosed with cancer, with a difference in median age of diagnosis of 10 years (58 vs 68 years). 9 The scale of the disparity may be more fully appreciated when expressed as years of life affected by cancer. 12,13 For a non-Aboriginal person in SA, cancer diagnosis at 65 threatens a further 24 years of life expectancy (Figure 1), while for an Aboriginal person in SA, typically diagnosed at a younger age, the life expectancy at risk is one-third higher at 32 years. 14 Overall, an Aboriginal person in SA is far more likely to die prematurely because of cancer. 1,10 Over half the Aboriginal people diagnosed with cancer in SA live in outer regional and remote regions. 9 Consequently, the degree to which they can benefit from cancer treatments is limited by a lack of local services (including for screening and early detection). 9,14 Long distance travel is often necessary to access specialist treatment, leading to experiences of isolation from community, as well as language and cultural differences. 4 These difficulties are reflected in the epidemiological data with those living in remote locations at the time of diagnosis being significantly more likely to die within 5 years of that diagnosis compared to those living in a major city (31.1% vs 48.2%, P < .001). 9 These disparities are difficult to understand and address without a deeply contextualized qualitative understanding of cancer experiences.
In recognition of the potential complexity of patient pathways for Care coordination is intended to facilitate continuity of care by providing assessment, management and on-going review of clinical and supportive care needs to Aboriginal patients from the time of notification to attend hospital, at admission, throughout treatment and follow-up. 16 This includes continuity of care from country to hospital and return home. These positions continue to operate under insecure funding arrangements. Efforts to adequately evaluate the roles are confronted with the challenge of describing the complex and varied tasks that together make up care coordination.
While there is no consensus definition in the international literature for "care coordination" across disease groups and health settings, it has been defined broadly as, "the deliberate organization of patient care between 2 or more participants involved in the patient's care to facilitate the appropriate delivery of health-care services". 17 International evidence provides some support for the utility of such roles for minority populations, including Indigenous populations. In the United States, studies have shown that "patient navigators" provide important emotional support and practical assistance for both mainstream 18 and Indigenous populations. 19 With "insider" knowledge of both the patient's social and cultural circumstances and of

| Data collection
Face-to-face, semi-structured interviews were carried out between January 2015 and July 2016 by a team of interviewers comprising male, female, Aboriginal and non-Aboriginal researchers. Having provided informed consent, participants nominated their preferred interviewer and location, with a view to maximizing cultural safety.
Interpreters were made available, but none were used as participants were proficient in English as a first or additional language.
The interview guide was developed following review of relevant literature and input from senior Aboriginal cultural advisors and researchers (HS, KM, JS and AB). Interviews took between 40 and 90 minutes, were audio-recorded, professionally transcribed and deidentified prior to analysis.

| Data analysis
Data were analysed in 2 ways. The manifest content of the narratives was entered onto a "cancer pathway mapping tool." 24 The adaptation and use of the tool have been described elsewhere. 2 The tool provided a practical way to record multiple stakeholder perspectives of where gaps and failures occurred for Aboriginal people, relative to an "optimal" cancer care pathway as defined by current health system policies. 25 Underlying influences on the overall patient pathway were identified as latent themes in thematic analysis

| Findings
Within the patient pathways and underlying themes, "care coordi-

| Navigating the health-care system
Promoting adherence and sustaining engagement Care coordination was particularly relevant for patients with more complex cancer diagnoses or psychosocial circumstances, for example, patients who needed to travel for treatment, whose families were unavailable to support them or whose diagnosis required input from multiple service providers. Where this complexity was recognized and understood, care coordinators could harness the potential flexibility within the system: …there's flexibility within the system and I think it needs somebody to…encourage staff to think flexibly.
If somebody can't come for their treatment for a period, to advocate for things to be put on hold and then restarted.
[Otherwise] they might've just thought, no, we're going to just finish the treatment because this person hasn't come. [SP1] Care coordinators also worked to help patients understand the need for treatment and to keep track of appointments to avoid   Importantly, care coordinators offered support during early consultations, to ensure that the patient and their partners or families understood the information they were provided, enabling them to make informed treatment choices.

| Information and communication
[

Educating staff and aboriginal identification
In response to a lack of culturally sensitive practice, some care coordinators communicated cultural needs to doctors and other staff, demonstrating their unique position at the interface between the health system and Aboriginal community members (Figure 2 This incident was addressed with assistance from the cancer care coordinator, who supported the patient to respond: [The care coordinator] said, "Well, it's not acceptable"…And she didn't force me or anything, she said-"You need to really consider doing an official complaint." So I thought, yeah, no, bugger it, I've got […] cancer and I'm hearing shit like that! So, yeah, I did an official report. [AP2] Racism was viewed as a barrier to Aboriginal people accessing health services at all: …a lot of people won't speak up because they don't want to go through all that rigmarole of the name calling and all that sort of stuff…so they shut up, they stay quiet and they don't talk unless it's to one of their own…they know is going to listen. [AC14] Mistrust of the health system was commonly expressed by participants and recognized as a barrier to accessing health services.
… a lot of them get scared when they go into hospitals because when family members go into hospital all they do is die because they wait at home for so long before they go and see a doctor… From the Aboriginal Cancer Care Coordinators' perspectives, building trust is a priority: …the first and foremost thing…is having that trust; that I'm there, that I am listening to them…And I'm there to speak on their behalf, and at any stage on the journey…and I will advocate on their behalf to make sure they get the treatment that they should be getting. [SP4] Facilitating appropriate treatment and support A lack of cultural safety within hospitals was attributed in part to a lack of staff who could speak Aboriginal languages or identify cultural issues and have them addressed appropriately. This could include gender issues: …he was embarrassed about white women washing him as a traditional man and he was having tears rolling down his face dealing with that…You try and tell white people that's not their culture, women shouldn't be seeing those things or touching… [SP17] Care coordinators also provided education to families so that they were not afraid to have their family member with cancer return home and assisting people to return to country at the end of life. As expressed by a past patient:  16 highlights the continuation and expansion of care coordination as a priority area for action, alongside further action to improve the provision of supportive care to Aboriginal people with cancer and their families. However, care coordination is not available in all metropolitan hospitals, let alone in many regional locations, so the need remains unmet for many.
Care coordination is considered one of the core dimensions of patient-centred care, alongside treating patients with dignity and respect; communication of appropriate information about their clinical condition and treatment options; and encouraging patient participation in decision making. 26 Patient-centred care is necessarily culturally competent, and these 2 approaches overlap in their essential features. 27 Both in Australia and internationally, patient (or person)centred care is, in turn, considered one of the pillars of quality health care, 28 and there is an increasing focus in the literature and within health systems on the necessity of understanding patients' experiences of the health system to know whether the care provided is meeting appropriate standards of clinical safety and effectiveness. 29,30 This study gives voice to experiences of Aboriginal people in SA and supports the importance and value of a patient-centred approach to health-care delivery for disadvantaged groups.

| Limitations
Participant recruitment by Aboriginal Cancer Care Coordinators could be seen to bias the data towards those who viewed them more favourably. This recruitment strategy was used because these care coordinators were ideally in contact with all identified Aboriginal people being admitted to the major metropolitan hospital for cancer treatment. When recruiting, the care coordinators were asked to assess whether a potential participant was well enough to take part in an interview and to refer them to the research team. In practice, this meant some participants were well known to the care coordinators, but several were not. It is worth noting that participants were also recruited via other health services and snowball sampling ( Table 1).
The study employed a deductive approach to data analysis in the first instance, as a pragmatic attempt to provide feedback on the cancer care pathway as defined within contemporary health policies.
Inductive coding identified underlying influences on this pathway.
While this approach had the practical advantage of reflecting on the current health system, we acknowledge that it may have limited analysis, for example by preventing alternative definitions of "optimal care" from being fully explored. Lastly, this study, while providing strong evidence for the importance of care coordination for Aboriginal cancer patients and their families, does not constitute a formal evaluation. Such an evaluation, incorporating both qualitative and quantitative methods, is an important future step.