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.

Clinical guideline for nurse-led early extubation after coronary artery bypass: an evaluation.

AIM: This paper is a report of an investigation of the development, implementation and outcomes of a clinical guideline for nurse-led early extubation of adult coronary artery bypass graft patients. BACKGROUND: Healthcare knowledge translation and utilization is an emerging but under-developed research area. The complex context for guideline development and use is methodologically challenging for robust and rigorous evaluation. This study contributes one such evaluation. METHODS: This was a mixed methods evaluation, with a dominant quantitative study with a secondary qualitative study in a single UK cardiac surgery centre. An interrupted time series study (N = 567 elective coronary artery bypass graft patients) with concurrent within person controls was used to measure the impact of the guideline on the primary outcome: time to extubation. Semi-structured interviews with 11 clinical staff, informed by applied practitioner ethnography, explored the process of guideline development and implementation. The data were collected between January 2001 and January 2003. RESULTS: There was no change in the interrupted time series study primary outcome as a consequence of the guideline implementation. The qualitative study identified three themes: context, process and tensions highlighting that the guideline did not require clinicians to change their practice, although it may have helped maintain practice through its educative role. CONCLUSION: Further investigation and development of appropriate methods to capture the dynamism in healthcare contexts and its impact on guideline implementation seems warranted. Multi-site mixed methods investigations and programmes of research exploring knowledge translation and utilization initiatives, such as guideline implementation, are needed.

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.