Even attempting to find out what the patient understands about their
treatment is a challenge. In the education session with the new patient,
for example, the staff member attempts to do this, but her attempt fails
even with assistance in interpreting her question:
The educator asks 'what do you think the machine
does for you?' His sister attempts to translate what she thinks the staff
member is asking and the patient responds 'Manymak (good)' (researcher's video description)
When viewing the videotape later, the staff member explains her interpretation
of what happened:
I've opened the interview trying to establish how much he knows about
dialysis and what the machine does for him and I think that when she translated
she might have said 'how does that machine make you feel?' I thought his
response indicated that he had he had a pretty poor knowledge of what
the machine did - so instead of the question being 'what does it do for
you?' and I wanted a scientific answer, it was translated as 'how does
it make you feel?'
This was confirmed by another interpreter who analysed this interaction:
When (the educator) asks about what he thinks the
machine does, his sister says: 'nhaltjan nhe ŋuli dhaakay ŋaama?' - there
is no real talk about the function of the machine or its effects - it's
interpreted as 'how do you feel about it?' (video analysis by researcher)
Click here to watch the section of the videotape described above.
In the medical review with a patient who has been on dialysis for some months, the use of the English term 'dialysis' was also problematic. The patient did not respond to the physician's question about whether she had any problems on dialysis but did respond when he rephrased the question using the term 'machine'. When she talked about dialysis with the Yolŋu researcher later, she referred to it in Yolŋu Matha as 'when we sit on the chair'.
The way Yolŋu talk about dialysis can also be confusing for staff and for other Yolŋu unfamiliar with renal care as the English word 'medicine' is often used (although with Yolŋu pronunciation i.e. mititjin) to refer to dialysis.
One patient recalled her first health service contact related to renal
disease:
...they gave me medicine through the pipes, not dialysis
- I didn't know about dialysis then; they told me 'soon you'll be getting
dialysis, maybe in Darwin, maybe in Gove' and I was thinking to myself
'I wonder what dialysis is?' (interview with Galikali)
Many years later, she describes her current understanding about dialysis:
Whenever I get dialysis it washes our blood; and it goes down the pipe
and walkulum; through one of them it goes down and it cleans it that
little kidney thing, and what happens to the rubbish - it is walkulum
down the other pipe, it goes off because it's bad; and then we drink
water and it gets more, like that;
When a shared understanding is achieved the outcome can be very positive,
as one family member described:
when we came to Darwin it was good communication
with the doctors and nurses at the hospital because they were telling
me everything about (my sister) and what was going to happen in the future
about the machines, if she's going on the machine everyday it will help
her, if she doesn't go on the machine, if she misses it, something's going
to happen, like dying, that's what the doctors said...they told us that
the fistula was for the machine, twisting two gurrkurr (blood vessels)
to put her on the machine because there are only two pipes to go into
her arm - one is to get the blood out into the machine and one is to get
the same blood, her clean blood to come back into her body; that's what
the doctor explained and she said that was good, she wanted to have dialysis (interview with
patient's relative)
Achieving an integrated understanding of all the biomedical concepts
related to renal care and how they interrelate is a challenge but essential
for patients to make an informed choice about treatment:
they need to know how the results relate to dialysis
because some people think that it only removes fluid not toxins, so if
they haven't got extra fluid they think they don't need dialysis (interview with renal nurse)
Achieving a greater shared understanding about the Yolŋu perspectives of treatment is also essential for achieving optimal provision and uptake of treatment. The Yolŋu discourse about dialysis focused predominantly on the proficiency of staff in inserting needles, not surprisingly since this a potentially very painful procedure they have to endure three times a week, every week, probably for the rest of their lives. Yolŋu also expressed their concern that, when nursing staff talk to each other when carrying out dialysis procedure, they may not be concentrating sufficiently on what they are doing.
Another important aspect of the Yolŋu experience of dialysis is their relationships with the nursing staff. These were a common topic in the interviews and informal discussions about dialysis. For example, some patients fondly recalled staff who had left the unit many years ago and talked in great detail about their relationships with current nursing staff. The other Yolŋu priority in discourse related to dialysis was their strong and often quite desperate desire for dialysis to be available in their communities.
Another area of communication difficulty concerned the reasons why patients
might miss dialysis. There appears to be little opportunity for the depth
of discussion to occur between staff and patients that could enable them
to develop a shared understanding of issues affecting treatment uptake.
Some of these issues have been discussed in other sections and include:
fear of the treatment itself; fear of staff recriminations, for example
when a patient has been drinking alcohol; withdrawal from treatment due
to distress over a death in the family or protest over lack of family
support; or simply organisational barriers such as transport problems:
Gayilŋa is missing a lot dialysis because the...gate
isn't open for the bus to come in sometimes the driver just sits there
without going in... to say the name of the person aloud so the person
knows - he just bips the horn; sometimes she is fast asleep and can't
even hear the horn or anyone saying her name - that's why she misses dialysis (interview with
family member)