"All they said was my kidneys were dead": Indigenous Australian patients' understanding of their chronic kidney disease

Objectives: To explore the understanding of both Indigenous and non-Indigenous Australians with end-stage kidney disease (ESKD) about the cause of their disease, and how this understanding could affect patients' engagement with their treatment. Design, setting and participants: Qualitative study conducted in 2005-2006 in nine hospital renal units and 17 associated dialysis centres in four states and the Northern Territory as part of the IMPAKT (Improving Access to Kidney Transplants) study. In-depth interviews were conducted with 146 Indigenous and 95 non-Indigenous Australians with ESKD, covering personal history of illness, social and psychosocial context, attitudes to treatments including transplantation, adequacy of information and communication, and satisfaction with services. Results: Indigenous Australians were less certain about the cause of their illness and reported feeling uninformed but eager for information. They commonly reported lifestyle factors as potentially causal, with profound confusion about the role of alcohol. Indigenous Australians had considerable ambivalence towards biomedical explanations. Conclusions: Indigenous Australians are confused, frustrated and feel poorly informed about their illness. This study confirms the need to develop shared understandings about chronic kidney disease and to put in place the high-quality and appropriate educational resources that patients need.