Some years ago a number of renal staff visited a remote community and
one of the nurses described what she learnt from that experience about
Yolŋu understandings of renal disease and treatment:
we went. ..to do some education and the dietitian,
myself, the doctor and the charge nurse went and all the community came
and it was a wonderful day and we sat underneath the tree with pictures
and things about the machine but they all thought their people were coming
home - they didn't understand that it was a life-long treatment and so
it all hit us then - that people didn't understand that it is a permanent
treatment that they have to stay in Darwin for, and that is why people
end up going home and missing dialysis; so the thing that we see - people
coming on to dialysis and they have a lot of trouble accepting that so
we can virtually do a pattern&they come in and have dialysis and feel
a little bit better, go home, get sick again, it might be a couple of
months if it's really early in their renal disease, then come back; and
then when they are really established on dialysis they still go back and,
depending on their health, how far they can waver until they get quite
sick again - sometimes it can go from a week to 3 weeks - and then slowly
by the end of the year, they know they can go away for a couple of days
or a week at the most and thats because their renal function has totally
gone so they've got no reserve left - that's quite a clear pattern. Especially
if they've got means of getting home they go home more frequently and
(then) they don't have any means of getting back (interview with nurse educator)
This inadequate communication between staff, patients and family members
about the permanence of renal failure and life-long dependence on treatment
(without a transplant) emerged as a crucial barrier to effective management.
The staff participants explained some of the reasons they believe contribute
to this communication difficulty:
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;
even (a long-term dialysis patient) who is educated still has misconceptions
about her dialysis even at this stage - it's not that she doesn't understand,
it's just that she can't figure it out an ...a lot of Europeans are the
same... it's very complex (interview with renal nurse).
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... they think they're cured and they go back, get sick again then come back in until they then understand (interview with nurse educator)
The importance of achieving effective pre-dialysis education and its inherent challenges are described by one of the staff: ..it's more financially viable because the person's understanding before they come onto dialysis is greater so therefore the uptake of treatment is greater - or not if they chose with a solid choice of knowledge that they don't want dialysis - we'll still probably get that not attending but not as extreme as with no education or understanding...that's a huge (issue) that uptake of dialysis at the beginning of treatment, their understanding of what it actually is - not a cure but a treatment and there is no easy answer and the hardest thing is establishing the education program - how do you establish an education program with one person in an urban centre and they live 800 kms away and have once come in for fistula education, go back out in the community and there is no reinforcement.
These are just an indication of some of the communicative challenges and the consequences of inadequate communication about renal disease and its management. Such consequences are not surprising given the extent of communication difficulties which were evident in many different areas relating to management ranging from diagnostic and monitoring procedures to all aspects of treatment.