This alternative treatment to haemodialysis is available but few Yolŋu take advantage of PD, even though it could theoretically allow them to go back to their community.
Two extracts from the interviews - one with a renal nurse and one with
the only patient involved in the study who had experience with peritoneal
dialysis - are presented below to illustrate the different perspectives
on the advantages and disadvantages of PD:
..a lot of people don't like the PD so the other
treatment option which would then allow them to actually go home and dialyse
at home - there is a story around there that it gets infection and you
die straight away...and we can't establish where that story comes from
- to our knowledge there haven't been any Yolŋu on PD who died - Galikali
went on it and she got a few infections but that's not why she changed.
She changed because she wasn't getting enough dialysis - she wasn't getting
enough regular bags, she had a lot of family, children and grandchildren
around when she first moved to Darwin so she was getting very tired so
she wanted to go back on the machine which was fine, other than that when
(another Yolŋu patient started on PD) a lot of people came to her and
said she was going to die, that she's not going to stay well and she'll
get sick; so there is that which is a sad option because if in their culture
they believe that is a really bad option for them - at the moment that
is the only one that financially available that could get them home if
they want to dialyse in community; they just need a clean house, supplies
get flown in; they just need a sink to wash their hands and they could
live at home (interview
with nurse educator)
The Yolŋu patient described the PD process in great detail and then explained
some of her concerns and difficulties with this treatment:
I got it in 1995 - I changed the bag every four hours,
four times a day everyday: 6.00 in the morning and 12.00 and maybe 3.00
and later, 9.00 then sleep then wake up at 6.00 next morning -hard work;..one
woman got (PD) and took it to (her community) and she died - I don't want
my stomach to be cut, cut, cut all the time - I had it for PD and I don't
want anymore; maybe she missed the machine...maybe she went visiting and
hunting and camping and missed using the machine... then one day I forgot
to change my bag and then I started to get crook my feet were swollen,
my face was swollen, I had to crawl... problem with my children - we were
all staying in that house and also two old ladies (including) my mother...and
they said 'why are you crawling around?' and I said 'I forgot one bag
and now I'm sick' and my mother said 'how about you change back to normal
dialysis' and then I rang one man.. who speaks good Yolŋu Matha (we taught
him) - I told him and he told the boss and I told (the renal physician)
I would like to go back to dialysis and I wanted the bag taken out. I
had it for 3 months and it was going well until that one day and also
I had to sit there at home looking after my body without going hunting;
if I had that for a long time and forgetting it sometimes it would have
got worse and worse because it was hard to remember because I was interested
in playing cards and going hunting - it made my life more difficult than(haemo)dialysis..
they wanted me to go back (to the community) when I had learnt the system
properly then they would have let me go home - they sent one man back
to (his community) on PD and now he is back on dialysis; a lot of people
on bags come back to dialysis...(PD) made me heavy - I didn't feel as
well as on dialysis- that's my experience with that bag; no other Yolŋu
(tried it) only myself and yapa.. others don't want it - I don't know
why, it's their decision.
She then talked about some of the barriers to returning to the community
with PD:
For people going back to (the community) the problem is the housing -
if they build a new house for that person to go back - but only the person
with the bag and the spouse and children could stay there, and the house
would be kept clean, and not too many people using the toilet. If the
brother goes and lives in that house it would be difficult for the woman
to do the work she needs to do - if it is only the woman her husband and
her children that's ok but if there's mirriri (woman's brothers) then
it's too hard - anybody else that's ok; If I tried to go back and there
was no house I wouldn't go because there is not enough housing - even
if there is a dialysis machine there I wouldn't go if there isn't a house
available.
Again, there are few opportunities in current practice for meaningful dialogue between staff and patients about issues of crucial importance in ensuring optimal services and access to appropriate treatment options.