“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
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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.
KeywordsAustralia 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.
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