‘Nowhere to room … nobody told them’: logistical and cultural impediments to Aboriginal peoples’ participation in cancer treatment
Shaouli Shahid A E , Lizzie Finn B , Dawn Bessarab C and Sandra C. Thompson DA WA Centre for Cancer and Palliative Care, Curtin Health Innovation Research Institute, Curtin University, GPO Box U1987, Perth, WA 6845, Australia.
B Department of Psychology, Curtin University, Room 318, Building 401, Perth, WA 6845, Australia. Email: l.finn@curtin.edu.au
C Centre for International Health, Curtin Health Innovation Research Institute, Curtin University, GPO Box U1987, Perth, WA 6845, Australia. Email: d.bessarab@curtin.edu.au
D Combined Universities Centre for Rural Health, University of Western Australia, PO Box 109, Geraldton, WA 6531, Australia. Email: sandra.thompson@cucrh.uwa.edu.au
E Corresponding author. Email: s.shahid@curtin.edu.au
Australian Health Review 35(2) 235-241 https://doi.org/10.1071/AH09835
Submitted: 24 September 2009 Accepted: 28 July 2010 Published: 25 May 2011
Abstract
Background. Cancer mortality among Indigenous Australians is higher compared to the non-Indigenous population and attributed to poor access to cancer detection, screening, treatment and support services. A large proportion of Indigenous Australians live in rural and remote areas which makes access to cancer treatment services more challenging. Factors, such as transport, accommodation, poor socio-economic status and cultural appropriateness of services also negatively affect health service access and, in turn, lead to poor cancer outcomes.
Design, setting and participants. Qualitative research with 30 in-depth interviews was conducted with Aboriginal people affected by cancer from across WA, using a variety of recruitment approaches.
Results. The infrastructure around the whole-of-treatment experience affected the decision-making and experiences of Aboriginal patients, particularly affecting rural residents. Issues raised included transport and accommodation problems, travel and service expenses, displacement from family, concerns about the hospital environment and lack of appropriate support persons. These factors are compounded by a range of disadvantages already experienced by Aboriginal Australians and are vital factors affecting treatment decision-making and access.
Conclusion. To improve cancer outcomes for Aboriginal people, logistical, infrastructure and cultural safety issues must be addressed. One way of ensuring this could be by dedicated support to better coordinate cancer diagnostic and treatment services with primary healthcare services.
What is known about the topic? Cancer is a major cause of death among Indigenous Australians who are generally diagnosed later with their disease, have poorer continuity of care and lower uptake and completion of cancer treatment. For cancer diagnosis at an equivalent stage of cancer, Aboriginal people have poorer outcomes.
What does this paper add? This study documents Aboriginal perspectives on basic infrastructure and logistical problems which impede their accessing hospital-based cancer treatments: transport, accommodation, preparation for the experience of hospital and cancer treatment, service affordability and the certainty of support services.
What are the implications for practitioners? There are difficulties for practitioners in addressing the geographic, socioeconomic and cultural differences that Aboriginal people face in accessing cancer treatment. System level changes to ensure cultural safety, social support and better coordination with primary healthcare are essential to improve outcomes of Aboriginal people with cancer.
References
[1] Smith KB, Humphreys JS, Wilson MGA. Addressing the health disadvantage of rural populations: how does epidemiological evidence inform rural health policies and research? Aust J Rural Health 2008; 16 56–66.| Addressing the health disadvantage of rural populations: how does epidemiological evidence inform rural health policies and research?Crossref | GoogleScholarGoogle Scholar | 18318846PubMed |
[2] Gruen R, Bailie R. Specialist clinics in remote Australian Aboriginal communities: where rock art meets rocket science. J Health Serv Res Policy 2004; 9 56–62.
| Specialist clinics in remote Australian Aboriginal communities: where rock art meets rocket science.Crossref | GoogleScholarGoogle Scholar | 15511327PubMed |
[3] Calver J, Wiltshire A, Holman CD, Hunter E, Garfield C, Rosman DL. Does health assessment improve health outcomes in indigenous people? An RCT with 13 years of follow-up. Aust N Z J Public Health 2005; 29 107–11.
| Does health assessment improve health outcomes in indigenous people? An RCT with 13 years of follow-up.Crossref | GoogleScholarGoogle Scholar | 15915612PubMed |
[4] Condon JR, Armstrong BK, Barnes A, Cunningham J. Cancer in Indigenous Australians: a review. Cancer Causes Control 2003; 14 109–21.
| Cancer in Indigenous Australians: a review.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD3s3isl2rug%3D%3D&md5=38394613a8cef2e81d438fcab349b839CAS | 12749716PubMed |
[5] Condon JR, Barnes T, Armstrong BK, Selva-Nayagam S, Elwood JM. Stage at diagnosis and cancer survival for Indigenous Australians in the Northern Territory. Med J Aust 2005; 182 277–80.
| 15777142PubMed |
[6] Roder D. Comparative cancer incidence mortality and survival in Indigenous and non-Indigenous residents of South Australia and Northern territory. Can Forum 2005; 29 7–9.
[7] Year Book Australia, 2005. Canberra: Australian Bureau of Statistics; 2005.
[8] Cunningham J, Rumbold AR, Zhang X, Condon JR. Incidence, aetiology, and outcomes of cancer in Indigenous peoples in Australia. Lancet Oncol 2008; 9 585
| Incidence, aetiology, and outcomes of cancer in Indigenous peoples in Australia.Crossref | GoogleScholarGoogle Scholar | 18510990PubMed |
[9] Shahid S, Thompson S. An overview of cancer and beliefs about the disease in Indigenous people of Australia, Canada, New Zealand and the United States. Aust N Z J Public Health 2009; 33 109–18.
| An overview of cancer and beliefs about the disease in Indigenous people of Australia, Canada, New Zealand and the United States.Crossref | GoogleScholarGoogle Scholar | 19413852PubMed |
[10] Jong KE, Vale PJ, Armstrong BK. Rural inequalities in cancer care and outcome. Med J Aust 2005; 182 13–4.
| 15651940PubMed |
[11] Cancer survival in Australia 1992–1997: geographic categories and socioeconomic status. Canberra: Australian Institute of Health and Welfare, Australasian Association of Cancer Registries; 2003.
[12] Lowenthal RM, Grogan PB, Kerrins ET. Reducing the impact of cancer in Indigenous communities: ways forward. Med J Aust 2005; 182 105–6.
| 15698352PubMed |
[13] McGrath P. I don’t want to be in that big city; this is my country here’: research findings on Aboriginal peoples’ preference to die at home. Aust J Rural Health 2007; 15 264–8.
| I don’t want to be in that big city; this is my country here’: research findings on Aboriginal peoples’ preference to die at home.Crossref | GoogleScholarGoogle Scholar | 17617091PubMed |
[14] Bourke L, Sheridan C, Russell U, Jones G, DeWitt D, Liaw S. Developing a conceptual understanding of rural health practice. Aust J Rural Health 2004; 12 181–6.
| Developing a conceptual understanding of rural health practice.Crossref | GoogleScholarGoogle Scholar | 15588259PubMed |
[15] Dixon J, Welch N. Researching the rural-metropolitan health differential using the ‘social determinants of health’. Aust J Rural Health 2000; 8 254–60.
| Researching the rural-metropolitan health differential using the ‘social determinants of health’.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD387mtlSquw%3D%3D&md5=42e5cfac4ae2ddd06dd194d903cad14bCAS | 11894255PubMed |
[16] Shahid S, Finn L, Thompson ST. Barriers to participation of Aboriginal people in cancer care: communication in the hospital setting. Med J Aust 2009; 190 574–9.
| 19450207PubMed |
[17] Shahid S, Bessarab D, Howat P, Thompson SC. Exploration of the beliefs and experiences of Aboriginal people with cancer in Western Australia: a methodology to acknowledge cultural difference and build understanding. BMC Med Res Methodol 2009; 9 60
| 19674484PubMed |
[18] Bishop B, Vicary D, Andrews H, Pearson G. Towards a culturally appropriate mental health research process for Indigenous Australians. The Australian Community Psychologist 2006; 18 31–41.
[19] Liamputtong P, Ezzy D. Qualitative Research Methods. 2nd ed. South Melbourne, Victoria: Oxford University Press; 2005.
[20] Aboriginal patient coordination and liaison project. Meet and assist service. Perth: West Australian Department of Health; 2006.
[21] Relationship, responsibility, respect. Canberra: Department of the Environment and Heritage; 2004. Available at http://www.indigenoustourism.australia.com/content/PDF/welcome_to_country.pdf [verified 22 March 2011].
[22] Access to health services. Canberra: Australian Institute of Health and Welfare; 2006. Available at http://www.aihw.gov.au/access-to-health-services-indigenous/ [verified 22 March 2011].
[23] Simpson A. Improving the health of rural and remote Aboriginal communities through state-wide education and employment initiatives. 10th National Rural Health Conference; 17–20 May 2009; Cairns, QLD. Office of Aboriginal Health, WA Health; 2009. Available at http://10thnrhc.ruralhealth.org.au/papers/docs/Simpson_Aeron_E7.pdf [verified 7 March 2011].
[24] Gruen RL, Weeamanthri TS, Bailie RS. Outreach and improved services for indigenous people in remote Australia: the requirements for sustainability. J Epidemiol Community Health 2002; 56 517–21.
| Outreach and improved services for indigenous people in remote Australia: the requirements for sustainability.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD38zjslKguw%3D%3D&md5=38b4cbe292f1f611e8aac1856223e27fCAS | 12080159PubMed |
[25] Stoneman J, Taylor SJ. Improving access to medicines in urban, regional and rural Aboriginal communities – is expansion of Section 100 the answer? Rural Remote Health 2007; 7: 738. Available at http://www.rrh.org.au/articles/showarticlenew.asp?ArticleID=738 [verified 7 March 2011].
[26] Jiwa M, Saunders CM, Thompson SC, Rosenwax LK, Sargant S, Khong EL, et al Timely cancer diagnosis and management as a chronic condition: opportunities for primary care. Med J Aust 2008; 189 78–82.
| 18637772PubMed |
[27] Mitchell GK. The role of general practice in cancer care. Aust Fam Physician 2008; 37 698–702.
| 18797526PubMed |
[28] Lawrence M, Dodd Z, Mohor S, Dunn S, de Crespigny C, Power C, et al. Improving the patient journey: Achieving positive outcomes for remote Aboriginal cardiac patients. Darwin: Cooperative Research Centre for Aboriginal Health; 2009.
[29] Bolch D, Johnston JB, Giles LC, Whitehead C, Phillips P, Crotty M. Hospital to home: an integrated approach to discharge planning in a rural South Australian town. Aust J Rural Health 2005; 13 91–6.
| Hospital to home: an integrated approach to discharge planning in a rural South Australian town.Crossref | GoogleScholarGoogle Scholar | 15804332PubMed |
