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Open Access Research article

“Looking back to my family”: Indigenous Australian patients’ experience of hemodialysis

Kate Anderson1, Joan Cunningham23*, Jeannie Devitt4, Cilla Preece1 and Alan Cass13

Author affiliations

1 The George Institute for Global Health, Sydney, NSW, Australia

2 Menzies School of Health Research, Charles Darwin University, Darwin, NT, Australia

3 Sydney Medical School, University of Sydney, Sydney, NSW, Australia

4 Independent consultant anthropologist, Darwin, NT, Australia

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Citation and License

BMC Nephrology 2012, 13:114  doi:10.1186/1471-2369-13-114

Published: 20 September 2012

Abstract

Background

In common with Indigenous populations elsewhere, Indigenous Australians have higher incidence of end-stage kidney disease (ESKD), but lower transplantation rates than their non-Indigenous counterparts. Understanding how the demands of dialysis impact on, and are impacted by, the lives of Indigenous patients may provide important insight into treatment pathways and decision-making.

Methods

We conducted semi-structured interviews in 2005–06 with 146 Indigenous and 95 non-Indigenous patients from nine hospital renal wards and 17 associated dialysis centres, which together treat the majority of Indigenous Australian ESKD patients.

Results

Factors influencing treatment experience included: the impacts of late diagnosis; family separations associated with relocating for treatment; the physical and psychosocial demands of hemodialysis; and ineffective communication between health care providers and patients. Although not unique to them, Indigenous patients were more likely to experience the combined effect of all factors.

Conclusions

Social/situational circumstances profoundly affect Indigenous Australian dialysis patients’ ability to fully engage with treatment. This may ultimately affect their likelihood of receiving optimal treatment, including transplantation. Areas for improvement include: earlier diagnosis; improved linkages between specialist renal services and primary care in regional settings; more effective communication and patient education; and more systematic, transparent approaches to patient “compliance” in transplant and home dialysis guidelines.

Keywords:
Indigenous Australian; Hemodialysis; End stage kidney disease; Access to healthcare; Life experiences; Patient care; Health communication; Late diagnosis; Qualitative research