“Looking back to my family”: Indigenous Australian patients’ experience of hemodialysis
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
BMC Nephrology 2012, 13:114 doi:10.1186/1471-2369-13-114Published: 20 September 2012
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.
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.
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.
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.