Indigenous Australians with kidney disease 'left in the dark' by doctors

Nov 3 2008

The latest research from the George Institute for International Health has revealed confusion amongst indigenous Australians regarding kidney disease with many patients feeling they are 'left in the dark' by their doctors.

The new research shows that indigenous Australians with kidney disease are also suffering from frustration and a lack of information about their illness and compared to non-indigenous patients with kidney disease, Indigenous Australians believe they are inadequately informed and many are uncertain about the cause of their illness.

This large qualitative study was carried out in nine hospital renal units and 17 associated dialysis centres in four states and the Northern Territory in 2005-2006 and involved 146 indigenous and 95 non-indigenous patients with serious, or end-stage, kidney disease.

It is a part of the IMPAKT (Improving Access to Kidney Transplants) study and set out to explore the understanding of both groups of Australians about the cause of their disease, and how this understanding could affect patients' engagement with their treatment.

The researchers from the George Institute and Menzies School of Health Research conducted interviews and found that the understanding of indigenous patients about their disease was markedly different from the non-indigenous group.

The interviews gathered information on personal history of illness, social and psychosocial context, attitudes to treatments including transplantation, adequacy of information and communication and satisfaction with services.

Professor Alan Cass, Director of the Renal Division at The George Institute says the interviews provided an insight into how patients engage with treatment and clearly showed that indigenous kidney patients are uncertain about what has caused their condition and many felt excluded from information and disempowered, which suggests strong reasons for the apparent difficulties they have in sticking to treatment.

The research has found that severe or end-stage chronic kidney disease, which necessitates ongoing dialysis or a kidney transplant to keep a person alive, is up to thirty times more common among indigenous Australians compared to non-indigenous Australians.

The researchers say this disproportionate share of kidney disease has placed considerable demands on indigenous families and communities, because of the need to attend dialysis usually three times each week, to take multiple medications and follow strict dietary restrictions and these demands are exacerbated by poor access to kidney transplantation.

The study results demonstrate that many indigenous patients want more information about their kidney disease but also identified a mistrust in health professionals, which the team have linked to a sense of many indigenous Australians being 'out-of-the-loop' and poorly educated about the cause of their illness.

The research shows many have little understanding of the medical terminology attached to severe kidney disease and telling a patient their disease was 'end-stage', was confusing and meaningless to them but they were eager for information.

The researchers say lifestyle factors were commonly reported as potentially causal, with profound confusion about the role of alcohol and indigenous Australians had considerable ambivalence towards biomedical explanations.

The researchers say the varying causes of kidney disease are complex, and present significant challenges when communicating them to patients and this is intensified in cross-cultural settings, aggravated by language barriers and different views on health and illness.

They say the quality of the relationship between patient and health professional is vitally important and ambivalence in relationship and poor understanding of their condition can clearly weaken patients' confidence and their ability to engage with recommended treatment.

Dr Cass says providing basic information is not enough and more effective communication and education is crucial as indigenous Australians are confused, frustrated and feel poorly informed about their illness.

The researchers say the 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.

In other research which pin-pointed barriers to access to necessary healthcare from the patient-provider interaction,and the health gaps between Indigenous and non-indigenous people, Professor Cass says a better understanding is needed of what is causing these inequities and a collaborative approach to healthcare reform adopted so that indigenous people can access the same level of care and achieve similar health outcomes to other Australians.

The study is published in the Medical Journal of Australia.