Indigenous patients 'confused' about kidney disease
Chronic kidney disease is 30 times more common among Indigenous than non-Indigenous Australians, but a new study has shown few patients understand their illness enough to make sound decisions on treatment.
Among the researchers for the study was Professor Alan Cass, who is the director of the Renal Division of the George Institute at Sydney University.
Professor Cass says the study showed patients were frustrated because they did not understand their illnesses.
"There were again and again stories where people felt they literally did not know what had caused their illness," he said.
"Now that's important because they would say things like, 'They just told me my kidneys have failed', or 'I still don't know what's wrong'.
"So people expressed frustration. They expressed considerable anxiety about what might have caused their illness and what they could have done or should have done and need now to do to keep themselves healthy."
In many cases translation services are inadequate, health workers use medical terms too difficult to understand, or there just isn't anyone there to answer basic questions. And kidney disease is a difficult illness to understand.
"It is hard to explain the variety of factors that can cause kidney disease and we demand a very strict adherence to diet restrictions, fluid restrictions," Professor Cass said.
"People are put on multiple conflicting and complex medications, and the treatment regimens required are rigorous."
The Return To Country program is a charity initiative trying to help kidney patients in remote areas. It is run by the Jimmy Little Foundation and the director of health projects, Don Palmer, says there are many misconceptions about kidney disease in the remote central Australian communities he deals with.
"Traditionally the kidney was something that has no physiological function for many people in central Australia. It was the place where the soul resides," he said.
"So there's a whole different narrative from their cultural point of view about what happens when they get a sick kidney. It's got to do with their whole spirit - their soul.
"Helping them understand that it also has to, you know that it can be changed with good diet and with good exercise, those things really only come too from people feeling positive about the future [and] then I think something can happen."
To help people understand and cope with their illness, the Return To Country program flies them home for visits as often as the foundation can afford to in between dialysis treatments.
The program is not cheap but Mr Palmer says the consequences of missing dialysis is more costly.
"One of the financial problems that federal and state Governments face is that they allocate a budget of about $42,000 per patient per annum for people who go back to their community and are so homesick they don't want to leave it. So they then become overloaded with fluid, they have to be emergency evacuation flown into Alice Springs and then they go into the ICU ward. So it's an incredible impost on government when people aren't regularly doing their treatment," he said.
"We know that by taking people back home regularly and them knowing that when they return to Alice Springs for their dialysis that they will once again still be able to get back home, that is that their treatment is not a one-way journey, then they're happy to go back to Alice Springs to continue their dialysis."
The Return to Country program was an idea that came from Indigenous communities. Mr Palmer says it is not a comprehensive solution but one that will help people until there is a better understanding of the disease and better treatments available in remote communities.
Adapted from a report by Paula Kruger for PM on November 3