As the patients' understandings about the medical view of kidney function is so limited, it is inevitable that their understanding about kidney failure also shares little in common with the medical story.
Renal disease - at least diagnosis and treatment of renal disease - is
a relatively new experience for Yolŋu as a group. Galikali was one of
the first Yolŋu to start haemodialysis so when she was diagnosed in the
early 1990s she had no prior knowledge of this kind of sickness:
I thought I was the only one who had kidney disease..
they didn't tell me, those people (about what was wrong).. I don't really
know (what goes wrong) - I know how it functions but I don't really know
the story about how the kidney works; if a Yolŋu is healthy his urine
goes straight but if the kidney is not working he won't urinate so much (interview with
Galikali)
Understandings about the causes of kidney disease are similarly unclear
and variable. Galikali had recently been warned that her grandchild could
get kidney problems because of his scabies and she wondered if this might
have been the cause of her renal disease. Although she was diabetic, she
did not have a strong understanding of the links between her diabetes
and renal disease, even now. She talked about how, when her diabetes was
first diagnosed, she had not taken it seriously:
...because I love sugar, I was still eating sugar
- as much as I wanted; they told me (to keep sugar down) but I didn't
want to.. I was thinking that they (the clinic staff) were lying to me;
(I thought) 'I won't worry about it - it doesn't matter if I eat sugar,
I won't believe them':..see where I am now. (interview with Galikali)
Galikali took action only after she experienced serious complications. By the end of that year she was on dialysis and, as a consequence of her renal disease, she has been forced to live in Darwin since that time (1993).
Galikali had not foreseen the consequences of not managing her diabetes,
and even now, after many years on dialysis, she is still unclear about
the connection with renal failure. This partial understanding about cause,
as well as resistance to dietary change and medication for managing diabetes,
was also expressed by other Yolŋu. G and her sister Gayilŋa (now on dialysis)
are both diabetic and she explained why they had not changed their behaviour
when both were diagnosed with diabetes:
You know that Yolŋu don't eat good food all the time,
we eat junk food at the same time, like that.. We like to eat any kind
of food... it's what we want to eat (interview with Gayilŋa and G)
Even though the doctors had told them:
Gayilŋa's kidney wasn't any good because she was eating bad food - lots
of sugar in tea and in food - that's why your kidney was not working,
that's what the doctor said, that's why both your kidneys are not working.
The role of diet was also emphasised by Galikali when talking about Yolŋu
ideas about causes of anaemia:
(Yolŋu) say... 'this is what all the Balanda brought - all the bad food
to feed us'. We should have been staying at the bush all the time or along
the coast eating wild food - food from the sea, food from the bush.. we
were healthy people (for a)long time
Galikali was adamant that renal disease too was new:
in the past Yolŋu didn't get this terrible kidney disease
Another long-term dialysis patient, Wurrapa, attributed her renal disease
to a combination of factors including emotional stress. Although she acknowledged
she had diabetes which was not controlled she did not see this as the
cause of renal failure but believed that they had common origins. When
asked about what Yolŋu generally think about causes of renal failure Wurrapa
and Galikali talked in great detail about food:
wanting to eat too much sweet food - Yolŋu thinking...missionaries brought
the bad food - Yolŋu had good food and there were no kidney problems,
people lived on the beaches and when the place got smelly we used to move
to a new spot
They then listed all the healthy Yolŋu foods and explained that people
did not get fat but were always slim.
Wurrapa went on to explain further about what she considered was another
causal factor, describing an incident when she was young in which she
was electrocuted by a kettle:
the power went up my arm and now it's dried out -
there are no veins, they dried out, no blood is moving; I kept working
even after all my veins dried up, I kept working then I was sleeping and
a voice was talking to me 'Wurrapa, you have no veins, you have to go
a get the needle' maybe Jesus; I heard the story and I accepted it, I
realised that I had to go to hospital and stay there, then I felt good
(because on dialysis the veins regenerated) (interview with Wurrapa)
Yolŋu ideas about non-biomedical factors influencing their renal disease were not expressed in the encounters with staff - at least not to the staff member - but were often referred to in interviews and informal discussions. Click here for more about the ideas expressed by Yolŋu, for example regarding supernatural agency in the context of renal disease.
The difficulties in explaining to patients about kidney function and
kidney failure are recognised to some extent by staff, although the level
of understanding achieved is often overestimated. For example, in a medical
review of a pending patient (Balang), the physician attempted to explain
to the patient and his family at length about these concepts.
When reviewing this section of videotaped interaction later with one of
the researchers the physician acknowledged the difficulties:
I think people know about kidney failure...the machine and dialysis, all
that, but the associated changes that go with chronic renal failure before
you need dialysis are pretty hard to explain...
However, when the researchers talked to the family after the consultation it was clear they had not understood the explanation. Even with further discussion and assistance with interpreting the Yolŋu participants were still unclear about Balaŋ's current status and prognosis as it was difficult for the interpreter to translate information which had no direct equivalent in Yolŋu Matha.
As the extent of the problem in achieving a shared understanding about
renal function and renal failure became increasingly apparent during the
research process, considerable discussion occurred with various participants
about how to address this. Galikali had one suggestion about how to better
explain to new patients about renal disease and treatment:
...it's good if I can tell them about my own story and what happened to
me and how I went on to start getting dialysis at Nightcliff; and so those
Yolŋu sitting there all look at me and some are actually frightened -
they think dialysis might be anything at all, they might get it and die;
and so when I tell them their heart and their emotions settle down and
they're not frightened..
People when they get sick the first time they like to ask questions like
'how did I get this kidney problem?' ...if we talk to people in the community
about kidney problems they will ask 'how did it start?'...if we go to
the communities we should take lots and lots of pictures to show them (interview with Galikali)