'Treatment' as 'cure'
Not surprisingly, given the limited shared understanding of underlying biomedical concepts related to renal function and failure, there is little shared understanding about treatment of renal disease.
One of the common misunderstandings with potentially serious consequences
is the interpretation of 'treatment' as 'cure' by Yolŋu patients. For
example, some Yolŋu believe that the fistula is a form of treatment that
will cure their renal disease:
I thought (the fistula) was going to make me well
again (interview with
renal patient)
Another patient's family asked when the fistula was going to be taken out. They had thought is was a form of treatment and that he no longer needed it, as they believed he was completely well following a period of dialysis in Darwin (this patient has chronic renal failure).
The expectation that haemodialysis can cure renal disease is common -
and dangerous - as one of the nurses explains:
A lot of people think that if they come to dialysis
all the time for 12 months or so their kidney is going to grow back and
they're going home - they don't have to stay; this is why a lot of them
when they come in and they start feeling better then they go home again
and then they get sick - a lot of it is communication and unless you can
visually see what's going on it's very hard for them to realise that their
kidney is not going to grow again and nine times out of ten this is the
only way that they are going to stay alive...it's a very complex matter (interview with renal
nurse).
The limitations in current patient education practice were also identified
as contributing to confusion about treatment:
I think they are so sick when they come in they have
dialysis and they start to feel really better and I don't think the education
is appropriate at the time - because they are so sick they're not going
to retain the information anyway...and it might be in the wrong language
so a lot of that doesn't sink in, that this is life-long, and because
we've never previously had a well established education program before
they've come on to dialysis so that education is not there beforehand;
so then they get better and they think that they're cured so then they
go home.. (interview
with renal nurse)