International Journal of Public Health

, Volume 59, Issue 2, pp 373–379 | Cite as

“I can’t do this, it’s too much”: building social inclusion in cancer diagnosis and treatment experiences of Aboriginal people, their carers and health workers

  • Carla TreloarEmail author
  • Rebecca Gray
  • Loren Brener
  • Clair Jackson
  • Veronica Saunders
  • Priscilla Johnson
  • Magdalena Harris
  • Phyllis Butow
  • Christy Newman
Original Article



Social inclusion theory has been used to understand how people at the margins of society engage with service provision. The aim of this paper was to explore the cancer care experiences of Aboriginal people in NSW using a social inclusion lens.


Qualitative interviews were conducted with 22 Aboriginal people with cancer, 18 carers of Aboriginal people and 16 health care workers.


Participants’ narratives described experiences that could be considered to be situational factors in social inclusion such as difficulties in managing the practical and logistic aspects of accessing cancer care. Three factors were identified as processes of social inclusion that tied these experiences together including socio-economic security, trust (or mistrust arising from historic and current experience of discrimination), and difficulties in knowing the system of cancer treatment.


These three factors may act as barriers to the social inclusion of Aboriginal people in cancer treatment. This challenges the cancer care system to work to acknowledge these forces and create practical and symbolic responses, in partnership with Aboriginal people, communities and health organisations.


Australia Aborigine Cancer Treatment Diagnosis Trust Socio economic security 



We express our gratitude to the services that supported recruitment of participants and to participants for sharing their stories with us. This research was conducted within a larger project funded by a NHMRC Health Services Research Grant (ID 440202). We thank the rest of the APOCC study team, including from the Cancer Council NSW, Professor Dianne O’Connell, Dr Rajah Supramaniam, Ms Jennifer Rodger and Ms Kristy Weir, and from The University of Sydney, Professor Bruce Armstrong and Dr Anthony Dillon. Other members of the APOCC Advisory Committee include Ms Liz O‘Sullivan, Professor Ian Olver, Dr Jenny Hunt and Mr Michael Langford.


  1. Arthurson K, Jacobs K (2004) A critique of the concept of social exclusion and its utility for Australian social housing policy. Aust J Soc Issues 39(1):25–41Google Scholar
  2. Atkinson A, Hills J (1998) Exclusion, employment and opportunity. LSE STICERD Research Paper No. CASE004. Centre for Analysis of Social Exclusion, LondonGoogle Scholar
  3. Australian Bureau of Statistics and Australian Institute of Health and Welfare (2008) The health and welfare of Australia’s Aboriginal and Torres Strait Islander peoples 2008. Canberra, ABS and AIHW (ABS Cat. No. 4704.0; AIHW Cat. No. IHW 21)Google Scholar
  4. Australian Institute of Health and Welfare (2011) The health and welfare of Australia’s Aboriginal and Torres Strait Islander people, an overview 2011. AIHW, CanberraGoogle Scholar
  5. Center to Reduce Cancer Health Disparities. “Patient Navigation research program”. Retrieved Accessed 16 Nov 2011
  6. Commission of the European Communities (1993) Background Report: Social Exclusion—Poverty and Other Social Problems in the European Community, ISEC/B11/93. Office for Official Publications of the European Communities, LuxembourgGoogle Scholar
  7. Commonwealth of Australia (2009) Closing the gap on indigenous disadvantage: the challenge for Australia. Commonwealth of Australia, CanberraGoogle Scholar
  8. Couzos S, Murray R (2007) Aboriginal primary health care: an evidence-based approach. Oxford University Press, South MelbourneGoogle Scholar
  9. Cunningham J, Rumbold A et al (2008) Incidence, aetiology, and outcomes of cancer in Indigenous peoples in Australia. Lancet Oncol 9:585–595PubMedCrossRefGoogle Scholar
  10. Davidson P, Page K (2012) Research participation as work: comparing the perspectives of researchers and economically marginalized populations. Am J Public Health 102(7):1254–1259PubMedCentralPubMedCrossRefGoogle Scholar
  11. Farmer P (1997) Social scientists and the new tuberculosis. Soc Sci Med 44(3):347–358PubMedCrossRefGoogle Scholar
  12. Garvey G, Cunningham J et al (2011) Reducing the burden of cancer for Aboriginal and Torres Strait Islander Australians: time for a coordinated, collaborative, priority-driven, Indigenous-led research program. Med J Aust 194(10):530–531PubMedGoogle Scholar
  13. Hunter B (2008) Indigenous social exclusion: insights and challenges for the concept of social inclusion. Social Inclusion Down Under Symposium, University of Melbourne, The Brotherhood of St LaurenceGoogle Scholar
  14. Hunter B, Jordan K (2010) Explaining social exclusion: towards social inclusion for Indigenous Australians. Aust J Social Issues 45(2):243–265Google Scholar
  15. Kowal E, Paradies Y (2010) Enduring dilemmas of Indigenous health: recognising the tensions inherent in all efforts to bring about change in Indigenous health outcomes. MJA 192(10):599–600PubMedGoogle Scholar
  16. Linda Burhansstipanov L, Bad Wound D et al (1998) Culturally relevant “Navigator” patient support the native sisters. Cancer Pract 6(3):191–194CrossRefGoogle Scholar
  17. Loppie C, Wien F (2005) Our journey: first nations experience of navigating cancer care. Cancer Care Nova Scotia, HalifaxGoogle Scholar
  18. Marmot M (2003) Understanding social inequalities in health. Perspect Biol Med 46(3):S9–S23PubMedCrossRefGoogle Scholar
  19. Mechanic D, Meyer S (2000) Concepts of trust among patients with serious illness. Soc Sci Med 51:657–668PubMedCrossRefGoogle Scholar
  20. Newman C, Butow P et al (2008) Cancer and Aboriginal people in Australia: a review of the literature. Crit Public Health 18(1):65–75CrossRefGoogle Scholar
  21. Norris R (2001) Australian Indigenous Employment Disadvantage: What, why and where to from here? J Econ Social Policy 5(2): Article 2Google Scholar
  22. Norris R (2011) The more things change… the origins and impact of Australian Indigenous economic exclusion. Brisbane, Post PressedGoogle Scholar
  23. Saunders P, Naidoo Y et al (2008) Towards new indicators of disadvantage: deprivation and social exclusion in Australia. Aust J Soc Issues 43(2):175Google Scholar
  24. Shahid S, Finn L et al (2009a) Understanding, beliefs and perspectives of Aboriginal people in Western Australia about cancer and its impact on access to cancer services. BMC Health Serv Res 9(132):1–9Google Scholar
  25. Shahid S, Finn L et al (2009b) Barriers to participation of Aboriginal people in cancer care: communication in the hospital setting. Med J Aust 190(10):574–579PubMedGoogle Scholar
  26. Shahid S, Bleam R et al (2010) If you don’t believe it, it won’t help you”: use of bush medicine in treating cancer among Aboriginal people in Western Australia. J Ethnobiol Ethnomed 6:1–22CrossRefGoogle Scholar
  27. Shahid S, Finn L et al (2011) ‘Nowhere to room … nobody told them’: logistical and cultural impediments to Aboriginal peoples’ participation in cancer treatment. Aust Health Rev 35:235–241PubMedCrossRefGoogle Scholar
  28. Thorne S (2008) Interpretive description. Left Coast Print, Inc, Walnut CreekGoogle Scholar
  29. Thorne S, Reimer Kirkham S et al (2004) The analytic challenge in interpretive description. Int J Qual Methods 3(1):1–15Google Scholar
  30. Ward P, Meyer S, et al (2011) Complex problems require complex solutions: the utility of social quality theory for addressing the Social Determinants of Health. BMC Pub Health 11:630Google Scholar
  31. Wells K, Battaglia T et al (2008) Patient navigation: state of the art, or is it science? Cancer 15(113):8Google Scholar
  32. Whop L, Valery P et al (2012) Navigating the cancer journey: a review of patient navigator programs for Indigenous cancer patients. Asia-Pac J Clin Oncol 8(4):e89–e96PubMedCrossRefGoogle Scholar
  33. Wilkinson R (1999) Putting the picture together: prosperity, redistribution, health and welfare. In: Marmot M, Wilkinson R (eds) Social determinants of health. Oxford University Press, OxfordGoogle Scholar
  34. Zhao Y, Dempsey K (2006) Causes of inequality in life expectancy between Indigenous and non-Indigenous people in the Northern Territory, 1981–2000: a decomposition analysis. Med J Aust 184(10):490–494PubMedGoogle Scholar

Copyright information

© Swiss School of Public Health 2013

Authors and Affiliations

  • Carla Treloar
    • 1
    Email author
  • Rebecca Gray
    • 1
  • Loren Brener
    • 1
  • Clair Jackson
    • 1
  • Veronica Saunders
    • 1
    • 3
  • Priscilla Johnson
    • 1
    • 2
  • Magdalena Harris
    • 1
    • 4
  • Phyllis Butow
    • 5
  • Christy Newman
    • 1
  1. 1.National Centre in HIV Social ResearchUniversity of New South WalesSydneyAustralia
  2. 2.Aboriginal Mental Health UnitCamperdown Community Health CentreSydneyAustralia
  3. 3.Cancer Council NSWKings CrossAustralia
  4. 4.The Centre for Research on Drugs and Health BehaviourLondon School of Hygiene and Tropical MedicineLondonUK
  5. 5.Centre for Medical Psychology and Evidence-based Decision-MakingThe University of SydneySydneyAustralia

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