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

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.

Black to the Future: Making the Case for Indigenist Health Humanities.

This paper outlines the development of Indigenist Health Humanities as a new and innovative field of research building an intellectual collective capable of bridging the knowledge gap that hinders current efforts to close the gap in Indigenous health inequality. Bringing together health and the humanities through the particularity of Indigenous scholarship, a deeper understanding of the human experience of health will be developed alongside a greater understanding of the enablers to building a transdisciplinary collective of Indigenist researchers. The potential benefits include a more sustainable, relational, and ethical approach to advancing new knowledge, and health outcomes, for Indigenous people in its fullest sense.

Evaluating a research capacity strengthening program for Aboriginal community-controlled health organisations.

A Masterclass Program was developed to strengthen the research capacity of staff within Aboriginal Community-Controlled Health Organisations (ACCHOs) and featured three Masterclasses delivered across Australia, including Understanding Research, Undertaking Research and Research Evaluation. A mixed-method process and impact evaluation of the Masterclass Program was undertaken. The process evaluation examined the reach of the Program and the impact evaluation comprised an online survey (n=45) and semi-structured interviews (n=21) with Masterclass participants. During 2014-17, 27 Masterclasses were delivered to 260 people, including predominantly ACCHO personnel but also Indigenous doctors and research institute staff who work closely with the ACCHO sector. Most survey respondents felt the Masterclasses improved their understanding of research and their willingness to participate in and undertake research. The qualitative analysis confirmed this and suggested that Masterclasses were implemented in a supportive learning environment which led to increased research capacity (increased research awareness, changed perceptions, increased understanding, critical thinking and new confidence) and ultimately enhanced research engagement (willingness to participate, motivating others, empowered critique of research partners and proposals, interest in further research training). Barriers to research engagement and areas for improvement of the Masterclass Program before, during and after Masterclasses were also identified.

Beyond the pipeline: a critique of the discourse surrounding the development of an Indigenous primary healthcare workforce in Australia.

A central strategy in addressing health disparities experienced by Indigenous people has been based on a concern with workforce improvement. In this paper, the Indigenous Australian healthcare workforce literature since 1977 is reviewed and its scope of concern, as being often limited to questions of 'supply', is critiqued. The pipeline metaphor, whether used explicitly or implied, regularly focuses attention on closing the gap on Indigenous representation within the health workforce. The exception though is the discourse concerning Indigenous Health Workers (IHWs), where questions concerning the legitimacy of the role continue to abound within a workforce hierarchy where community knowledge, though shown to be crucial to culturally safe health service provision, is trumped by the other health professions whose knowledges and legitimacy are not in question. This contrast exemplifies the need to examine the working of power not just 'supply'. The pipeline metaphor is disrupted with concerns about a range of other 'gaps' - gaps in the recognition of Indigenous knowledges, in organisational structures, in governance and in self-awareness by the health professions of their whiteness. As the health system continues to measure workforce development in terms of pipeline capacity, our study questions what happens beyond the pipeline.

Exploring barriers to and enablers of adequate healthcare for Indigenous Australian prisoners with cancer: a scoping review drawing on evidence from Australia, Canada and the United States.

BACKGROUND: International frameworks supported by national principles in Australia stipulate that prisoners should be provided with health services equivalent to those provided in the general community. However, a number of barriers unique to the prison system may hinder the provision of equitable healthcare for this population. In Australia, Indigenous people carry a greater burden of cancer mortality, which the Cancer Data and Aboriginal Disparities (CanDAD) project is seeking to address. During the course of recruiting participants to the CanDAD study, Indigenous Australian prisoners with cancer emerged as an important, under-researched but difficult to access sub-group. METHODS: This scoping review sought to identify barriers and facilitators of access to adequate and equitable healthcare for Indigenous Australian prisoners with cancer in Australia. This review demonstrated a lack of research and, as such, the scoping review was extended to prisoners with cancer in Australia, New Zealand, the United States and Canada. This approach was taken in order to summarise the existing body of evidence regarding the barriers and facilitators of access to adequate and equitable healthcare for those who are incarcerated and suffering from cancer, and highlight areas that may require further investigation. RESULTS: Eight studies or commentaries were found to meet the inclusion criteria. This limited set of findings pointed to a range of possible barriers faced by prisoners with cancer, including a tension between the prisons' concern with security versus the need for timely access to medical care. CONCLUSION: Findings identified here offer potential starting points for research and policy development. Further research is needed to better elucidate how barriers to adequate cancer care for prisoners may be identified and overcome, in Australia and internationally. Furthermore, given Indigenous Australians' over-burden of cancer mortality and over-representation in the prison system, further research is needed to identify whether there are a unique set of barriers for this group.

Cancer Data and Aboriginal Disparities (CanDAD)-developing an Advanced Cancer Data System for Aboriginal people in South Australia: a mixed methods research protocol.

INTRODUCTION: In Australia, Aboriginal and Torres Strait Islander People carry a greater burden of cancer-related mortality than non-Aboriginal Australians. The Cancer Data and Aboriginal Disparities Project aims to develop and test an integrated, comprehensive cancer monitoring and surveillance system capable of incorporating epidemiological and narrative data to address disparities and advocate for clinical system change. METHODS AND ANALYSIS: The Advanced Cancer Data System will integrate routinely collected unit record data from the South Australian Population Cancer Registry and a range of other data sources for a retrospective cohort of indigenous people with cancers diagnosed from 1990 to 2010. A randomly drawn non-Aboriginal cohort will be matched by primary cancer site, sex, age and year at diagnosis. Cross-tabulations and regression analyses will examine the extent to which demographic attributes, cancer stage and survival vary between the cohorts. Narratives from Aboriginal people with cancer, their families, carers and service providers will be collected and analysed using patient pathway mapping and thematic analysis. Statements from the narratives will structure both a concept mapping process of rating, sorting and prioritising issues, focusing on issues of importance and feasibility, and the development of a real-time Aboriginal Cancer Measure of Experience for ongoing linkage with epidemiological data in the Advanced Cancer Data System. Aboriginal Community engagement underpins this Project. ETHICS AND DISSEMINATION: The research has been approved by relevant local and national ethics committees. Findings will be disseminated in local and international peer-reviewed journals and conference presentations. In addition, the research will provide data for knowledge translation activities across the partner organisations and feed directly into the Statewide Cancer Control Plan. It will provide a mechanism for monitoring and evaluating the implementation of the recommendations in these documents.