This paper describes the research approach and methods of a study exploring Aboriginal Australian beliefs and experiences around cancer and cancer services in WA (results are reported elsewhere[25
]. The researchers considered and were respectful of key steps of conducting Indigenous research. However, there were limitations, some that could not be overcome. It was not possible, despite the efforts of the researchers, to secure funding beyond one year for the research, which was a major constraint upon providing the optimal means of feedback to participants and the Aboriginal community; and for research translation. However, to minimise the fact that the project did not get funding for research translation, the findings were presented to Aboriginal community representative forums organised by other organisations and their feedback obtained. Copies of the interviews were sent to some participants and permission was given to other organisations to utilise the study findings in their activities. However, this falls short of the personal feedback to study participants that would be optimal. The long time it takes for data collection, analysis and reporting is another reality for researchers that is not well understood by members of the Aboriginal community.
Funding constrained capacity in other ways; the main interviewer was female whereas ideally an Aboriginal male interviewer may have been important for recruiting male participants and their willingness to talk freely. Many of the ARG members were females, the community-based health workforce are overwhelmingly female, and females are known to attend health services more commonly than males, all of which are likely to have favoured recruitment of more females than males. Another challenge was that the researchers were often dependant on a local person to contact and liaise with the participants on their behalf, which sometimes limited the researchers' choices and opportunities.
The researchers were reliant upon the ARG as a conduit to the Aboriginal community. Coordinating the ARG as a group advisory network proved challenging due to members' individual commitments and work. Aboriginal professionals often have membership on several reference groups for different projects to be managed on top of their core job role, and this can place additional stress and pressure on them. Thus, when group meetings were difficult to convene, members of the group had to be contacted individually which was time consuming and provided input of a different nature to that of a face-to-face meeting.
The Indigenous research paradigm with its need for the research process to be relationship-based, respectful, culturally appropriate and inclusive of Aboriginal people challenged the training and experience in positivist social science of the interviewer. Building the trustworthy relationship with the participants before doing the actual interview created important insights during the research about the life of contemporary Aboriginal people and their concerns.
Presentations of the findings by the researchers needed to be tailored to the audience with the researchers being conscious of balancing their responsibility and obligation to their participants and the wider Aboriginal community with the academic expectations of their disciplines. Wherever possible, an Aboriginal co-presenter assisted with presentations. There are specific guidelines from journals concerning criteria for authorship and the desire to include Aboriginal authors must be balanced against tokenism. In the current study, authorship issues were given careful consideration and based upon a substantial contribution to the conception, conduct, analysis and writing of the research. One of the authors in this paper is an Aboriginal researcher who was involved with the research and has contributed significantly to publications arising from the study.
Given our commitment to working with the Aboriginal community, it is important to consider how they benefit from this research. Arising out of contacts made during data collection in one regional area, the researchers supported an Indigenous woman to establish an Indigenous Women's Cancer support group[26
], and are continuing to work with the group around resourcing and developing a working partnership with mainstream services. There have been opportunities for capacity development of Indigenous people as researchers in the process including them undertaking university postgraduate coursework and research, as co-presenters during presentations in conferences, seminars and lectures and as co-authors on publications arising from this study. Given the dearth of understanding that service providers had of issues relevant to Aboriginal people and cancer, the systematic consideration of the understanding, views and experiences that Aboriginal people have with regard to cancer and that impact upon their access to cancer prevention and treatment services has been important. Information has been disseminated to prompt relevant agencies to improve health and social support in favour of the health and well-being of Aboriginal people. The information and advocacy efforts have influenced policy planners and service providers to acknowledge the need for approaches different to traditional mainstream services. The findings are also informing and assisting the development of appropriate messages with regard to cancer in Aboriginal communities.
Our approach has elements of community-based participatory research which is research conducted as an equal partnership between traditionally trained "experts" and members of a community, and is generally iterative in nature, incorporating research, reflection, and action in a cyclical process[27
]. The nature of our research, the research funding constraints, and the many demands upon the small Indigenous population (both community members and health professionals), would create many challenges for truly equitable partnerships. Moreover, community-based participatory research is most likely to be effective in creating change if it arises in the community and has a clear intention to being action-oriented[28
]. This seems most likely to be achieved if there is long-term engagement and adequate time and resourcing for each partner, requisites not overcome simply by good intentions.
Western researchers and academics are becoming more appreciative of the need to work with Indigenous researchers as part of decolonising research methodologies and, to incorporate appropriate processes in research with Indigenous people. Some of the key issues of Indigenous research methodology – including the need for being attentive to the culture and traditions of the population they are working with, the necessity to make the process participatory and inclusive of Indigenous communities, the requirement for providing feedback to the community – are equally applicable to other culturally distinct and marginalised communities in the world. However, the profound effect of colonisation on the Australian Indigenous population and its legacy of mistrust and suspicion has a huge impact which needs to be acknowledged and addressed in approaches to Indigenous research. The ongoing challenge is to prioritise responsible conduct of research that ensures a social justice outcome, builds the capacity and develops positive relationships with the researched populations, and creates spaces for Indigenous voices to be heard. This view has also been supported by researchers conducting Indigenous and cross-cultural research in other countries[29