http://www.kidney-international.
org
& 2013 International Society of Nephrology
The IMPAKT study: using qualitative research to
explore the impact of end-stage kidney disease and
its treatments on aboriginal and Torres Strait Islander
Australians
Kate Anderson1, Joan Cunningham2,3, Jeannie Devitt1 and Alan Cass1,2
1
The George Institute for Global Health, Sydney, New South Wales, Australia; 2Menzies School of Health Research, Charles
Darwin University, Darwin, Northern Territory, Australia and 3Sydney Medical School, University of Sydney, Sydney, New South
Wales, Australia
Indigenous Australians suffer a disproportionate burden of
kidney disease. Better understanding regarding how the
disease and its treatments impact on indigenous patients,
their families, and communities is important to provide
effective services for this population. To investigate this issue,
a large qualitative interview study was undertaken as part of
the IMPAKT (IMProving Access to Kidney Transplants)
research program. Indigenous (146) and non-indigenous (95)
patients from nine hospital renal units and 17 associated
dialysis satellite centers were interviewed. The study revealed
that indigenous patients’ experience of dialysis is strongly
mediated by the social and situational circumstances of this
population—specifically living in regional and remote
communities, relative youth, late referral to nephrology care,
language differences between patients and health providers,
and low literacy. The dialysis regimen required dislocation of
patients from their support networks, a situation exacerbated
by pervasive miscommunication with healthcare providers,
and a commonly reported sense of isolation and alienation.
The implications of these findings for service delivery models
are discussed.
Kidney International Supplements (2013) 3, 223–226; doi:10.1038/kisup.2013.19
KEYWORDS: communication problems; indigenous Australians; kidney
failure; qualitative research; remote communities
Correspondence: Alan Cass, Menzies School of Health Research, PO Box
41096, Casuarina, Northern Teritory 0811, Australia.
E-mail: alan.cass@menzies.edu.au
Kidney International Supplements (2013) 3, 223–226
meeting report
INTRODUCTION
Aboriginal and Torres Strait Islander Australians live in urban,
rural, and remote settings across the country, with a diversity of
cultures and languages.1 Indigenous Australians suffer higher
rates of kidney disease than the general population. While only
2.5% of Australia’s population are Indigenous Australians,
they represent over 11% of patients receiving treatment for
end-stage kidney disease (ESKD).2 Indigenous peoples in
New Zealand, Canada and the United States share this heavy
burden of kidney disease, experiencing more than twice the
prevalence of ESKD than their non-Indigenous counterparts.3–6
Exploring the impact of kidney disease and its treatments
on Indigenous Australian patients, their families, and
communities has until recently only been undertaken in a
handful of geographically localized studies. This paucity of
research is likely due to structural barriers of distance,
remoteness, and language difference that make accessing
this patient population challenging. This paper discusses the
value of qualitative research in exploring, understanding, and
communicating the impact of ESKD and its treatments on
Indigenous people.
SOCIAL AND ENVIRONMENTAL CIRCUMSTANCES OF
INDIGENOUS AUSTRALIANS WITH ESKD
While there is great diversity among Australia’s Indigenous
people, many share a set of social and environmental
circumstances that are likely to affect how they respond
to illness and the demands of ongoing ESKD treatment.
Such circumstances include the regional and remote living
locations of the majority of Indigenous patients.7 Two-thirds
of Australia’s Indigenous population live in regional and
remote Australia, often in very small communities with
populations of between 50 and 3000 people.8 Access to
health-related infrastructure in regional and remote Indigen-
ous communities is generally poor,9 with approximately half
of the Indigenous ESKD patients living in areas with neither
dialysis nor transplant facilities.10
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Compared with non-Indigenous households, Indigenous
households have larger numbers of dependants, smaller
incomes, and are more likely to extend over generations.11
Indigenous people are more likely to live in single-parent
households and households with resource commitments to
extended families living elsewhere.11 Indigenous Australians
attain lower levels of education, which, combined with lower
socio-economic status,12 means that Indigenous ESKD
patients are more likely to have limited health literacy.
In Australia, State governments are responsible for
funding and providing renal services. Recent State govern-
ment renal strategies have aimed to provide maintenance
dialysis to more patients in home- or community-based
settings.13,14 In addition, the Federal Government has
committed funds to increasing organ donation and kidney
transplant rates. Nevertheless, significantly more Indigenous
(71%) than non-Indigenous (37%) patients remain depen-
dent on satellite- or hospital-based care.15 This is due to both
fewer Indigenous patients receiving transplants and fewer
utilizing self-care hemodialysis and peritoneal dialysis.
It has been suggested that social and cultural differences,
in combination with the requirement for patients to relocate
to another town or city for dialysis, profoundly affect
Indigenous Australians’ responses to treatment.16,17 Pervasive
miscommunication between Indigenous patients and their
health-care providers has been demonstrated to undermine
the quality of patient care and to impact on health.18 This
complex bringing together of factors operating at different
levels, including that of the broader environment, socio-
cultural context, health system, and patient–provider inter-
face, shape patient uptake, experiences, and outcomes of
renal care.
PREVIOUS QUALITATIVE RESEARCH INTO INDIGENOUS
AUSTRALIAN PATIENTS’ EXPERIENCES OF ESKD TREATMENT
Few previous studies have explored the views and experiences
of Indigenous ESKD patients. Those studies that have been
reported, though usually small and geographically localized,
have highlighted a number of key issues, including:
difficulties in reconciling social and family responsibilities
with the substantial requirements of the treatment regime;17
inappropriate education processes for Indigenous patients
who are non-English speaking and have poor health
literacy;17 the trauma associated with relocation to an
unfamiliar urban setting to access renal services and
subsequent impact on the ability to maintain demanding
dialysis regimes;16,17 and the pervasive nature of miscommu-
nication that was often not recognized by either the patient
or the health provider.18
RATIONALE FOR THE IMPAKT STUDY
While these studies have identified issues of concern in the
treatment of Indigenous patients, the limitations of the size
and scope of the research meant that comparative Australia-
wide analysis of the ability of Australian renal services to
provide appropriate and effective care to Indigenous ESKD
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K Anderson et al.: Kidney disease impact on indigenous Australians
patients was not possible. To this end, the IMPAKT
(IMProving Access to Kidney Transplants) study19 was
conceived by a multi-disciplinary research team, to investi-
gate the low rates of Indigenous transplants in Australia, and
to understand experiences in accessing and providing renal
replacement therapy, from the views of patients as well as
medical, nursing, and allied health staff.
THE IMPAKT STUDY
The IMPAKT study was a health services research program
involving a multi-disciplinary team and employing a mixed-
methods approach.19 IMPAKT employed a broadly inter-
pretive theoretical perspective or lens,20 ‘which looks for
culturally derived and historically situated interpretations of
the world’,21 which was guided by a perspective of advocacy.
Our approach can be considered interpretive insofar as we
were intensely interested in how participants viewed their
own experiences of dialysis and access to transplant. But it is
also an advocacy perspective as our interview questions were
shaped by our awareness of potential discriminatory
practices, an awareness of health literacy and communication
barriers among Indigenous patients, and by an awareness that
no one had systematically explored Indigenous views on
transplantation.
One of the major components of the IMPAKT study was a
large-scale, in-depth interview study involving Indigenous
and non-Indigenous patients.19 This interview study was
conducted across Australia in 2005–2006. Three investigators
conducted semi-structured, in-depth interviews with patients
with ESKD. A total of 146 Indigenous and 95 non-Indigenous
patients were interviewed from 9 hospital renal wards and 17
associated dialysis centers that together provide treatment to
the majority of Indigenous Australian ESKD patients. A
maximum diversity sampling strategy helped select patients
on the basis of ethnicity, location, age, sex, treatment
modality, and illness duration. Almost all interviews were
conducted individually and face-to-face and interpreters were
used where required.
In the interviews with patients, we aimed to elicit a life-
story narrative that made sense to the patient.22 The
conversational frame, recognizable and engaging for patients,
covered personal history of illness, social and psychosocial
context, attitudes to treatments including transplantation,
adequacy of information and communication, and satisfac-
tion with services. The analytic methods used were evolu-
tionary and iterative in nature.23,24
KEY THEMES FROM PATIENT INTERVIEWS
The interviews with Indigenous patients revealed many
important issues impacting Indigenous ESKD patients, their
families, and communities. Understanding these issues is
critical in designing appropriate and effective service delivery
models for this disadvantaged patient group. Indigenous
patients’ experience of dialysis is strongly mediated by the
common social and situational circumstances of this
population—particularly living in regional and remote
Kidney International Supplements (2013) 3, 223–226
K Anderson et al.: Kidney disease impact on indigenous Australians
communities, the relative youth of Indigenous patients,
late referral to nephrology care, language differences
between patients and health providers, and low literacy.
Compared with their non-Indigenous counterparts, the
experience of dialysis for Indigenous patients involved
considerable social hardship. Problems stemming from
miscommunication punctuated the experiences of dialysis
of the Indigenous patients, causing considerable con-
fusion and frustration. Indigenous patients reported feeling
poorly informed about their illness and treatment require-
ments and indicated that they were keen to receive more
information.25
Owing to the remote location of many of Australia’s
Indigenous communities, a large proportion of the Indigen-
ous patients interviewed had been required to leave their
family and community in order to access dialysis treatment.
Indigenous patients repeatedly expressed the impact of
dislocation in terms of the lack of social support. Indigenous
patients commonly spoke of wanting to return home and the
difficulties of being separated—perhaps permanently—from
their families, communities, and land. The move to urban
areas was characterized by social and cultural isolation for the
Indigenous patients.
Compared with the non-Indigenous patients interviewed,
the Indigenous patients were substantially younger and, while
sick themselves, many were caring for dependent family
members and children. Some of the Indigenous patients
also held important roles within their communities, which
required them to return home for meetings and cultural
events. The relocating dialysis patients who also had
dependent children often faced a grim decision—whether
to bring their children with them to the new town/city or to
leave them in the care of other family members at home in
their community. For most, neither option was satisfactory.
An abrupt and unexpected commencement of dialysis was
a common occurrence described by many of the Indigenous
participants. Indigenous patients described previously being
totally unaware that they had kidney problems. They were
often diagnosed and then flown immediately to a larger city
for urgent commencement of dialysis. Those patients who
became aware of their illness late in the progression of the
disease described having no time to mentally or physically
prepare for the relocation to the city/town and their new life
on dialysis. The suddenness of the change was also reported
to greatly affect patients’ families and friends as well as their
ability to carry out their responsibilities.
Communication difficulties, particularly those associated
with language differences between patients and health
providers, and low literacy were recurrent topics in the
interviews with the Indigenous participants. These were
significant barriers to Indigenous patients receiving necessary
education and maintaining effective communication with
their healthcare providers. When combined with physical
relocation, dislocation from family and community, and
delayed presentation to renal services, the additional
difficulties surrounding communication were often the
Kidney International Supplements (2013) 3, 223–226
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breaking point for patients who were already under
substantial physical, mental, and emotional stress.
The following excerpt from an interview with a young
Indigenous male patient affords an insight into the alienation
and isolation experienced by patients who are separated from
their families and usual support networks:
Patient: I know one women that’s from there, she went up
there and because she’s an Aboriginal women, her family
took her up there but her family didn’t realise how much
she needed it (dialysis), and then she couldn’t get on
because she didn’t organise before she went up there, she
couldn’t get dialysed so she spent a week without it, she
come back here and died, eh and it’s only because they’re
not informed. They’re not stupid, yeah.
Interviewer: They weren’t given enough information?
Patient: They don’t give it the right way. Instead of like
trying to teach them, they come across like they know
everything and they don’t compromise on that, eh and so
everyone, when they come across like that, everyone’s
too scared to ask them questions why so then they just
shut up.
(Aboriginal man, 30–39 years of age, on hemodialysis)
The translated response of a man speaking in a Central
Australian Aboriginal language echoes this reluctance to seek
information:25
You don’t go knocking on their door, (that’s the) ‘‘danger
one’’. The door is locked. They sit behind closed doors.
(Aboriginal man, 50–59 years of age, on hemodialysis)
The first patient talked about the impact of dislocation from
home and family:
And then you get old people that have been out in the
communities for a long time, they’ve never been on
dialysis or sick a day in their lives and all of a sudden
they’ve had this big change and all they want to do is go
home, they know they are going to die sometime so all
they want to do is go home. And they can’t get dialysed at
home so they’re kept down here away from their family
for that long y and that’s what’s killing them at the
moment is because they can’t go home.
(Aboriginal man, 30–39 years of age, on hemodialysis)
IMPLICATIONS—THE NEED TO IMPLEMENT ALTERNATIVE
SERVICE DELIVERY MODELS
In light of the barriers faced by Indigenous patients,
alternative service delivery models need to be developed
and tested. Such models need to be regionally specific to
account for the great diversity in settings and contexts
across the country. One key overarching issue is that more
effective and appropriate communication and education for
Indigenous kidney disease patients are urgently required.
Community-based education should commence much earlier
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in the continuum of chronic kidney disease, well before the
need to commence renal replacement therapy.
Other suggested changes include the delivery of dialysis
services closer to Indigenous patients’ home communities,
more cross-cultural training of health-care workers and
clinicians, an increase in the use of interpreter services
(particularly in Indigenous languages with greater numbers
of patients), and the training of more health-care providers
from ethnic and racial minority backgrounds—particularly
Indigenous Australians.
In a context where patients are often considered
responsible for their own lack of engagement with and poor
outcomes from renal service delivery, the findings from the
IMPAKT study suggest the onus should rather be on renal
service providers and health services/systems to change to
better address the needs of Indigenous patients, their families,
and communities.
DISCLOSURE
The IMPAKT study was funded by a National Health and Medical
Research Council (NHMRC) Project Grant (#236204). Kate Anderson
was funded by an Australian Postgraduate Award from the University
of Sydney. Joan Cunningham and Alan Cass were supported by
NHMRC Senior Research Fellowships (#545200 and #457101).
Through endorsement as an ‘in-kind’ project, IMPAKT was supported
by the Co-operative Research Centre for Aboriginal Health (CRCAH),
Darwin. AC has served on Advisory Boards for Merck, Abbott and
Baxter, and has received fees for preparation and delivery of lectures
from Fresenius, Merck, Roche and Baxter.
ACKNOWLEDGMENTS
We gratefully acknowledge the support of the study participants,
participating treatment sites and their associated reference groups.
We also thank the participating Aboriginal Community Controlled
Health Services. Publication of this article was supported in part by
the National Health and Medical Research Council of Australia
through an Australia Fellowship Award (#511081: theme Chronic
Disease in High Risk Populations) to Dr Wendy Hoy, and the National
Institutes of Health—NIDDK DK079709, NCRR RR026138, and NIMHD
MD000182.
DISCLAIMER
The funding bodies had no role in the study design, in the collection,
analysis or interpretation of data, in the writing of the manuscript, or
in the decision to submit the manuscript for publication.
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