One of the most important, but also most problematic, biomedical concepts in the context of renal management is fluid. Fluid overload as a consequence of renal failure is a source of constant struggle for many patients - and between staff and patient.
One staff member explained some challenges in talking about this concept
and strategies she has attempted:
I developed a tool called the water story - calling
it water because I thought water was something they could relate to and
they had a word for it whereas fluid was a better word in our language
- it covered more things but it didn't really mean anything; so I talk
about water and then I give examples - when you drink water or tea or
coca cola or orange juice or beer or whatever that's fluid and that's
what you need to control...; that's tied in with counting - I'd like people
to have an idea of how many drinks they have a day but there all different
kinds of cups and pannikins that they use and I talk about 4 drinks, trying
to get a very basic message across - talk about four drinks (interview with educator)
She also talked about the importance of understanding the consequences
of fluid overload:
you need to explain to them why fluid overload is
so dangerous - the main things that happen with fluid overload is that
you get short wind, you might have to sleep propped up at night, you might
get swelling on the ankles, high blood pressure and you feel tired and
dizzy - but they get all those symptoms anyway&short of breath, swelling
and they're often tired.. Another problem with fluid overload is that
if they don't have those symptoms then they're not really interested -
but I know they're fluid overloaded and I know that their heart is working
harder pumping all that fluid around their body and they're at risk of
a heart attack...if they don't have those symptoms of short wind and they
don't really understand high blood pressure - and they all have high blood
pressure if they are fluid overloaded - but they don't realise because
you can't feel it then if you don't have it, why would you relate to it?
It is not only communicating the concepts of fluid and the consequences
of fluid overload that is challenging, but also communicating related
concepts in English using culturally specific constructs:
The other thing is that you can't talk about cutting
fluids without talking about salt intake because when you have salty foods
you drink more - and a lot of people.. they put salt on the food, they
use salty additives, they love those noodles, they eat lots of pies..
to change your taste buds takes about four to five weeks...to adapt to
low salt...... that's the other thing I say to them is that salty food
or salty ones they make you thirsty but I don't think the word thirst
is good as it doesn't really describe - I say dry throat and I use other
things to try and get around because you can drink without being thirsty
but when you've had a really salty meal you get that parched and you want
to drink but I think they are so used to salt that they don't realise
it.. (interview with educator)
The difficulties faced by patients in responding to medical concerns,
even if patients do share these concerns, are acknowledged by some staff:
And then I think there are lots of issues not just
in people who come here, in the type of life style they need to maintain
to stay well. I think it's very difficult for anyone, and more difficult
up here where it's hot, you are expected not to drink much, because it
makes you sick if you do and...particular diets are thought, you know
ways of eating and drinking and living, are thought to be of benefit and
they're hard to explain and hard for anyone to really understand and adhere
to even if they do want help. (interview with physician)
The issue of fluid was discussed in the medical review with |aritjan as standard practice in such encounters, although she was not experiencing fluid overload at the time. Click here to watch a section of the videotape of this interaction.
The different interpretations of this exchange, as well as a description
of the exchange, provide a stark illustration of the complexities of this
area of management:
(the physician) asks Ŋaritjan how much she is drinking
then immediately asks more specifically 'how much water?' and Ŋaritjan
says 'little bit water ga (and) tea little bit ga bilin (and that's it)'
then (the physician) asks 'how much each day? Water, tea?' and Ŋaritjan
says 'Three cup, two cup, little bit' very confidently (videotape
description by researcher)
In the interview with the physician after the interaction he gave his
interpretation of their discussion about fluid:
I did try and talk to her about fluid intake although
she's not putting on too much fluid between dialyses and we asked her
and she explained quite clearly - she seemed to have quite a clear understanding
about how much she should drink; I asked her how much water and she said
she also drank tea and she went into some discussion of the amount she
drank (interview
with physician)
This was discussed further when he reviewed this section of the videotape:
the way she talks about fluid is quite detailed compared to other people
- that's amazing.. when she's talking about the size of the cups and
she's talking about tea and water and the numbers
A very different picture emerged from discussions with the patient and
later with her carer. When reviewing the videotape with Ŋaritjan and some
other Yolŋu the researchers asked her if she really drinks only two cups
a day and she replied:
Maybe really two cups (laughs); the whole night we
drink tea (lots of laughing)...they told me to have two cups of tea...I
have one cup of tea but it's a long day so how can I just have two cups
of tea...I have one cup of tea then anther one and drink it then another
one and drink it then another one... (interview with Ŋaritjan)
In a later discussion with |aritjan's carer she explained her understanding
about fluid when asked what the doctors had told her about this issue:
..if they drink fizzy drink the fluid goes up and
they've got too much fluid on them..she's supposed to have fluid.. just
right for the kidney .. everyday to drink is water, lots of water only
or tea; if we make tea with sugar, too much fluid comes in to the body
and it gets too big that means they are carrying too much fluid on them...water
is alright because water can give them strength...drinking water is good,
that's what they said, too much (i.e. a lot) water to keep the kidney
flowing, (the doctor) explained - they've all explained about the kidneys
and fluid...I know that if she gets sick I'm going to take her straight
into the hospital if too much fluid has built up...I don't know (how it
builds up) - they haven't explained that to me .. (interview with carer)
This family member is considered to be more informed than most Yolŋu
about the biomedical issues: she has worked extensively in a health field
with non-Aboriginal staff and describes how she actively seeks information
about renal issues and asks questions to clarify anything that is unclear.
She was quite confident that she shared a common understanding about fluid
with medical staff. Similarly, some staff also believed there was a shared
understanding about fluid and that fluid overload was a result of conscious
choice rather than inadequate knowledge about how and why it should be
controlled:
..they know - they know that it's important...they
know that it's bad for their heart - they do know that...it has been an
ongoing problem ..(interview
with nurses)
Another long-term patient indicated one source of the confusion illustrated
above:
this is the story I heard a long time ago - that
if there is somebody who has got a sick kidney you should drink a lot
of water, but now it is a different story, if your kidney is sick drink
a tiny bit of water (interview with Galikali)
Even this long-term patient with extensive renal experience seems to think that the biomedical story has changed over time, and is apparently not aware that the advice remains current but for different conditions. It is not surprising that such apparently contradictory messages - which are both common in biomedical discourse - are highly confusing for Yolŋu if the different contexts to which they relate are not effectively communicated.