Although blood is a crucially important concept for Yolŋu, their understandings about the nature and significance of blood are very different from biomedical constructions. From a medical perspective, blood is central in renal care: as the primary function of the kidneys is to clean the blood, the build up of (poisons) and fluid in the blood is the most immediate consequence of renal failure.
Blood tests are therefore an important tool for monitoring the progress of patients with chronic renal failure as well as end-stage renal disease. Blood is taken from dialysis patients every month and, in theory, patients are informed about the results by their primary care nurse and/or the doctor when they are seen for their bi-monthly medical review. As well, other staff may become involved in education activities with a patient who has abnormal results.
Different understandings emerged about both the communication process and the biomedical concepts related to blood test results. In fact, every aspect of communication relating to blood was a source of difficulty from the function and components of blood to the relationships between blood and diet, fluid, medications and dialysis. A number of issues about feedback of test results emerged related to different understandings about how and when it is done and differences between actual and intended processes.
The nurse educator explained that the patient is informed about the results
of their monthly blood tests when there is a problem:
Bloods are taken each month and primary nurses write down the result and
what should happen then that they're reviewed and the primary nurses should
speak to a group of their patients, go through the results and any trouble
spots they might get in the dietitian, if they're having trouble with
eating food or their balance is out in some way and also myself if there
is something like (abnormal) haemoglobin she'll get me in to review the
patient; so that should happen every month, each individual patient should
get some education and then every two months they see the doctor in the
clinic review where everything is looked at - dialysis adequacy, nutrition,
medication review.
One patient, however, assumed that when she is not told the test results
it is because the staff are protecting her from bad news:
we want to know, I don't know what they're thinking
- if they tell us the truth we might think hard, maybe they don't want
to tell us yuwalk dhäwu (the true story)...if they've got bad news, for
me, I want them to tell me straight. I won't get upset if they tell me
'you've got bad blood' or 'a big heart' or 'a bad liver' if they tell
me straight. (interview
with Galikali)
This is in direct contrast to the intention of staff who explain why
they feedback only abnormal results:
it's hard because there are so many things that we
can educate on but it gets too confusing sometimes - any of us can only
take so much information in - we take blood every month and there are
a lot of results that come out and this is why we focus on the ones that
are out of limits because we need to get them back to normal... (interview with nurse)
The purpose of the medical review is also to discuss abnormal blood test
results:
what I try to do in this situation is use the blood
tests results and records of them on dialysis and try to discuss what
might be issues from that... (interview with physician)
A concern from patients about why blood was being taken had been identified
in the past and a strategy to respond to this concern was implemented
-but apparently has not been sustained:
it's semi-informal - the nurses have a concept that
each time a blood test is taken we should say 'this tube is for checking
haemoglobin, this one's to look at your dialysis'; that should happen
automatically but I'm not sure that it happens a lot; because there were
issues years ago that we were just taking bloods and chucking it the bin
and people not getting any results back; it came about that we should
be really certain that the patient knows the reason why we are taking
the blood; but I'm not sure - because dialysis can be so mechanically
automated that...the verbal communication of what they're doing (when
taking samples) gets missed because you're in that kind of mode (interview with nurse educator)
In one of the videotaped encounters the main focus of the communication
was the feedback of blood test results. Both the participants in this
interaction had extensive experience with renal care, one as a provider
and one as a recipient. Both could therefore be expected to be well informed
about the other persons perspectives and understandings. This was not
the case, however, and extensive differences in understandings about many
of the concepts became evident through the process of video interpretation
and interviews. This interaction, despite its limitations, was viewed
by the Yolngu patient as a great improvement on her prior experiences
with feedback of test results:
they haven't gone through all the numbers with me
before&when they
get our blood test and take it to Darwin hospital we don't even hear the
result until we see the doctor (interview with Galikali)
In this interaction a number of difficulties were revealed, many of which were also found to be problematic in other encounters. These included: a lack of shared understanding of key concepts; representation of information in a form that was not accessible to Yolŋu; and different understandings about the processes of information sharing related to test results, as described above.
Frequent education sessions over many years had achieved only a partial
understanding of the medical purposes in testing blood, even with a very
experienced patient who is fluent in conversational English:
they get the blood and they look for worms or sickness
or bugs and they count the cells inside our blood - white and red and
how are the red and white working - which ones are dangerous and which
ones are safe (interview
with Galikali)
Further analysis of communication about specific biomedical concepts
illustrates the extent of pervasive misunderstanding in renal care encounters.
The greatest barrier was the different understandings about the components
of blood but these are embedded in different understandings about underlying
concepts such as the structure and function of the circulatory system.
For example, Yolŋu have only one term for both arteries and veins -'gurrkurr'
and Galikali suggested that 'some Yolŋu think that blood is moving and
some people think it is just sitting there'. A discussion about pulse
also revealed important differences in understanding:
they (Yolŋu) don't think (the pulse) is blood - they
think it's air... they don't think wisely or very far they just think
that there is some kind of air inside (interview with Galikali)
Galikali is likely to be more familiar than most patients with many of
the terms used in the interaction but even she had very little understanding
of their meanings:
they find the haemoglobin in the blood - they'll look and say who's got
lots of blood or whose blood is getting less..I don't know (how it gets
less) - must be something he's been eating; a long time ago what we used
to hear from those nurses and health workers...they used to tell us we'd
get weak blood if we eat too much gundirr (white clay) - (Balanda) people
think that gundirr is no good
When asked about what haemoglobin is Galikali responded:
you Balanda know all about this...red cells are dangerous they hit...the
white cells - they are the protecting ones - they prevent trouble; the
red cells they won't be able to go and kill the white ones, maybe or
what do they do? Do they eat the blood - the red cells?
When this confusion about anaemia, haemoglobin and red blood cells became apparent the participants discussed ways of improving communication about these biomedical concepts. Galikali explained that Yolŋu check their blood by looking at the inside of their lower eyelids or the palm of their hands and if they are pale or if they get tired when walking Yolŋu 'know they have got not enough blood on them'. During further discussion Galikali explained that when they are told they are anaemic Yolŋu think that they have 'bayŋu blood - maybe all the blood's gone - that's what they think'. Informal discussions with other Yolŋu indicate that this interpretation of anaemia as an inadequate quantity of blood by Yolŋu is quite common.
The staff member involved in this interaction was aware that these terms are particularly difficult and she also explained that some patients think that the machine is washing away red blood cells, not only fluid and toxins, and that is what is making them weak.
When asked about what concepts are most difficult to explain the nurse
educator said:
everything! Probably what I mostly concentrate on now, which is the biochemistry
- the patients' pathology bloods are taken every month so explaining what
haemoglobin is, what sodium is, what calcium is, which they go through
but again what do they understand of the actual meaning when I say calcium,
phosphate or magnesium or haemoglobin?
One of the strategies the nurse educator and Galikali implemented was
to work together to construct a story about phosphate and calcium in Yolŋu
Matha which they both found extremely useful. According to the nurse educator
this activity was:
excellent, getting (Galikali) to write it down in
her language and the story - it just worked so much better and she seemed
to understand and she was asking me questions then translating back into
English, saying 'is this what you're saying?' so she actually was getting
the story so I could see then that it was exactly what I wanted to get
across...and it worked for me to actually plan out a story because when
I've explained it to patients before you get confused and you start one
way and if you see they're not comprehending then you change the story
line and can get mixed up but sitting down with B and going through it
I've got a better plan in my head of how to tell the story, rather than
get too complicated, to get the message across...I'll write it down and
get it established in English then use the Interpreter service to get
it translated into other languages - I've been talking to (Clinical Nurse
Consultant) about it so that the other nurses (can use it); ideally what
I'd like to do is have a story for each pathology part of the blood that
we take each month and then get it translated into languages from that (interview with
nurse educator)
In addition to the use of unfamiliar concepts and language, the ways
is which the test results are represented are also inaccessible to Yolŋu,
even to patients who are literate in English and can read numbers. For
example, Galikali said it was helpful to look at the blood test results
and was positive about her interpretation:
I understand the numbers, when they go up that's good and when they go
down that's bad
This is true for some of the tests such as haemoglobin. However, this is not true for all the tests: a high phosphate result, for example, is not good. This illustrates the importance of a shared understanding about the nature of the quantitative representation that is not assured by an ability to 'read' numbers.
Phosphate, potassium and calcium are also recurring concepts in the biomedical discourse in renal care. These are discussed in the context of feedback of blood test results, discussions about medication and dietary education. In every instance they were a source of often unrecognised difficulty see next link