Many of the issues of importance to the Yolŋu participants related to the consequences of forced relocation. These issues were recognised to some extent by staff, but there was no opportunity for the complexity of these consequences and the depth of trauma experienced by patients and their families to be expressed through these encounters.
These are some of the perceptions of staff expressed during the interviews about what is important to their Yolŋu patients:
.. I think there are profound barriers and fears the way I perceive it for Aboriginal people from remote areas in coming to Darwin to have treatment and to be explained, you know, to discuss with health care workers about what's wrong with the kidneys and changes required to their lifestyle because they have kidney disease, in order for them to survive. I think.. a huge problem and I think it's one, it's a big issue. There are key issues relating to, that the way we have offered treatment in the past and still probably now requires that they move (from) their land and their family and their community and I perceive that as being very distressing to them. So people's families often visit here but that's obviously not an answer. And there's lots of issues where people say to us they need to go home to attend functions of, you know, significant ceremonial functions and things that have been seen as...I'm not saying this service is worse than anyone else, in fact there are many ways it's very aware of this. They have been perceived as people not complying with treatment and etc, in fact I think in many ways the renal service knows that that is important and tries to come up with ways around it, but it is really hard with renal disease because people, many of them on haemodialysis need to be treated regularly. So it's a very big issue. So I think separation has a profound effect on the people, on the patients and on their emotional health and probably their physical health. So I think that's one big issue. (Interview with physician)
...relocation to Darwin, the changes in culture, the changes in money - where the money comes from, like the pension if they're not on the pension in the community, having their family with them; housing is a huge problem; there's a huge waiting list, the hostels are always full.. and the food - if they've got all their family - they don't have access if they don't have enough money; they don't have access to their community food like hunting so they've got just the food here which can be quite expensive, the expense of living in Darwin compared to the community - they find it a huge strain because they've got power bill, phone bills, shopping bills, they're using taxis, their money just goes and they've got no money for the rest of the fortnight for food, so the social worker and ALO are always working out money and social problems - it's just huge.. (interview with educator)
.. They want to go home. In the context of end stage, it's dislocation, no family, no support. ..fear, terror, get on and people die - never go home - they've been given a death sentence.. If you are in the community - these people get renal disease, they go to Darwin, you might see them once or twice and then they die and they go home to be buried - you just die on the installment plan which is what renal medicine is all about.. (interview with physician)
And another staff member bluntly - and accurately - observed:
.. while you're on dialysis you're not normal - you're sick but you're
just not dead...
The burdens of chronic illness and relocation are often common to more
than one member of the family, stretching resources and support systems
even more:
.. there is always someone that they know which is
sad but good so there's someone else in their family with renal failure
or someone married into their family (interview with educator)
The same staff member also commented on another consequence of cultural
dislocation:
..I think when they've been here a long time - especially the younger
patients - they really miss out on learning how to cook; that they're
here so long and they're away from the training that would go on - especially
the women, and they don't always know how to cook the way their mothers
or their grandparents do
Such missed educational opportunities would be expected to go far beyond knowledge of food preparation and deny patients the opportunity to develop their knowledge in many other aspects of Yolŋu life.
The issues identified by these staff as important to Yolŋu were certainly
consistent with those expressed by Yolŋu. The experience of one patient
illustrated the stark reality, shared by other Yolŋu, as she talked about
some of the problems she has to deal with as a result of having to live
in Darwin:
..I told her (the staff member) the truth...that
I wasn't getting enough (food); like this time, this week, when I get
my children's allowance, they take all the money for accommodation and
leave only $30 for food - that's not enough; (in the past my husband)
used to go out fishing and all my children used to help me with the money
and I used to buy food from the shop and there used to be plenty of food
all the time; they were drinking only alcohol before but these days they
are drinking and smoke marijuana too - that's why they keep money for
themselves; (husband) isn't hunting now because no-one is helping to pull
his boat with the car - before he used to have lots of friends living
nearby who liked going out fishing with him (they lost their house and
moved to a hostel in a different suburb).. when I put (food) there to
feed the children, (my adult children) with alcohol and marijuana they
go and eat it all - I can't even talk to them - I've got no strength to
talk to them.. all I've got at home at the moment is flour, sugar, teabags
- no meat or anything and there is no money until next week, my husband
is going fishing tomorrow and I asked him to get more fish... (interview with Galikali)
One patient explained that her adult children are in Darwin only because
she is here for dialysis: if she could be in the community they would
also stay in the community. This year she has lost a son and a nephew.
If Yolŋu with renal failure did not need to relocate to Darwin for their
own survival, it is likely that these young men would still be alive.
The focus in medical encounters is consistently on the physical dimensions
of the renal experience and management and even when questions are asked
about more general issues such as eating and sleeping, it was in connection
with their physical state rather than in the wider context. For example,
when one patient responds to the question by describing an emotional problem
the staff member responds sympathetically, but the sleeping problem and
its cause are not pursued.
Galikali tells M about her eating patterns and what
she likes to eat, then they talk about sleeping. Galikali describes her
problem with sleeping because of thinking about her son who recently passed
away. M then asks about going home and Galikali is telling her when she
will go when M notices a sore on Galikali's arm and reaches across to
touch it (researcher's
videotape description)
Even when staff acknowledge the influence of the social and cultural
dimensions of the patients' experience on their renal management, there
are challenges in knowing how to talk about such issues:
.. the other communication problems are when patients
are not turning up to dialysis you want to know why not, but how do you
make that non-judgmental and non-threatening? Because there might be family
issues and social issues that interrupt their treatment which we want
to make known to them that if they ring us we can rearrange their dialysis
.. but I think the non-judgment needs a lot of work as a lot of patients
feel judged if they don't come.. (interview with nurse educator)