Exploration of the beliefs and experiences of Aboriginal people with cancer in Western Australia: a methodology to acknowledge cultural difference and build understanding

Abstract

Background: Aboriginal Australians experience poorer outcomes, and are 2.5 times more likelyto die from cancer than non-Aboriginal people, even after adjustment for stage of diagnosis, cancertreatment and comorbidities. They are also less likely to present early as a result of symptoms andto access treatment. Psycho-social factors affect Aboriginal people's willingness and ability toparticipate in cancer-related screening and treatment services, but little exploration of this hasoccurred within Australia to date. The current research adopted a phenomenological qualitativeapproach to understand and explore the lived experiences of Aboriginal Australians with cancerand their beliefs and understanding around this disease in Western Australia (WA). This paperdetails considerations in the design and process of conducting the research.Methods/Design: The National Health and Medical Research Council (NHMRC) guidelines forethical conduct of Aboriginal research were followed. Researchers acknowledged the past negativeexperiences of Aboriginal people with research and were keen to build trust and relationships priorto conducting research with them. Thirty in-depth interviews with Aboriginal people affected bycancer and twenty with health service providers were carried out in urban, rural and remote areasof WA. Interviews were audio-recorded, transcribed verbatim and coded independently by tworesearchers. NVivo7 software was used to assist data management and analysis. Participants'narratives were divided into broad categories to allow identification of key themes and discussedby the research team.Discussion and conclusion: Key issues specific to Aboriginal research include the need for theresearch process to be relationship-based, respectful, culturally appropriate and inclusive ofAboriginal people. Researchers are accountable to both participants and the wider community forreporting their findings and for research translation so that the research outcomes benefit theAboriginal community. There are a number of factors that influence whether the desired level ofengagement can be achieved in practice. These include the level of resourcing for the project andthe researchers' efforts to ensure dissemination and research translation; and the capacity of theAboriginal community to engage with research given other demands upon their time.