Exploration of the beliefs and experiences of Aboriginal people with cancer in Western Australia: a methodology to acknowledge cultural difference and build understanding.
BACKGROUND
Aboriginal Australians experience poorer outcomes, and are 2.5 times more likely to die from cancer than non-Aboriginal people, even after adjustment for stage of diagnosis, cancer treatment and comorbidities. They are also less likely to present early as a result of symptoms and to access treatment. Psycho-social factors affect Aboriginal people's willingness and ability to participate in cancer-related screening and treatment services, but little exploration of this has occurred within Australia to date. The current research adopted a phenomenological qualitative approach to understand and explore the lived experiences of Aboriginal Australians with cancer and their beliefs and understanding around this disease in Western Australia (WA). This paper details considerations in the design and process of conducting the research.


METHODS
The National Health and Medical Research Council (NHMRC) guidelines for ethical conduct of Aboriginal research were followed. Researchers acknowledged the past negative experiences of Aboriginal people with research and were keen to build trust and relationships prior to conducting research with them. Thirty in-depth interviews with Aboriginal people affected by cancer and twenty with health service providers were carried out in urban, rural and remote areas of WA. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers. NVivo7 software was used to assist data management and analysis. Participants' narratives were divided into broad categories to allow identification of key themes and discussed by the research team.


CONCLUSIONS
Key issues specific to Aboriginal research include the need for the research process to be relationship-based, respectful, culturally appropriate and inclusive of Aboriginal people. Researchers are accountable to both participants and the wider community for reporting their findings and for research translation so that the research outcomes benefit the Aboriginal community. There are a number of factors that influence whether the desired level of engagement can be achieved in practice. These include the level of resourcing for the project and the researchers' efforts to ensure dissemination and research translation; and the capacity of the Aboriginal community to engage with research given other demands upon their time.
Shahid
Shaouli
S
Centre for International Health, Curtin University of Technology, Perth WA, Australia. s.shahid@curtin.edu.au
Bessarab
Dawn
D
Howat
Peter
P
Thompson
Sandra C
SC
D000328:Adult; D003431:Cross-Cultural Comparison; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006296:Health Services; D006302:Health Services Research / Q000941:ethics / Q000379:methods*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D014904:Western Australia
Lancet Oncol. 2008 Jun;9(6):585-95
18510990
Lancet. 2006 Jun 3;367(9525):1842-8
16753487
Med J Aust. 2009 May 18;190(10):574-9
19450207
J Epidemiol Community Health. 2008 Aug;62(8):668-76
18621950
Med J Aust. 2000 Feb 7;172(3):110-3
10735020
Soc Sci Med. 2002 Apr;54(8):1267-79
11989962
Aust N Z J Public Health. 2009 Apr;33(2):109-18
19413852
Aust Health Rev. 2008 Feb;32(1):56-65
18241149
Am J Community Psychol. 2002 Aug;30(4):473-92
12125778