DOCTOR OF PHILOSOPHY - JEFFRIES-STOKES Christine Andrea

503 Pages·2017·26.53 MB·English

The Western Desert Kidney
Health Project
This thesis is presented for submission
for the degree of
Doctor of Philosophy
of the University of Western Australia
School of Primary, Rural and
Aboriginal Health Care
By Dr Christine Andrea Jeffries-Stokes
MBBS, B Med Sc, MPH, FRACP
2017

I would like to thank the Aboriginal people of the Eastern
Goldfields, especially the Wongutha, Mulba-Ngadju, Anagu,
Ngalia and Kuwarra people for sharing their land, their
culture, their wisdom, their hearts and their lives with me
during this project.

I would especially like to acknowledge my co-investigator,
Annette Stokes, for her incredible hard work, her grace, her
dignity, her patience and her friendship – without Annette
this project truly would not have been possible.

And Geoffrey, without whom I would never have found my
home in the Goldfields.
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Thesis Abstract
The Western Desert Kidney Health Project -
Health Status of Aboriginal and Non-Aboriginal
Adults and Children in a Remote Area of
Australia
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The Western Desert Kidney Health Project - Health Status of Aboriginal and non-
Aboriginal Adults and Children in a Remote Area of Australia
The increasing burden of kidney disease and type 2 diabetes (T2DM) is a worldwide
problem, especially for Indigenous populations. The average life expectancy at birth of
Aboriginal Australians is significantly less than for non-Aboriginal Australians. National
figures suggest the disparity in remote areas is even more marked. Contributing factors
to this reduced life expectancy are the effects of T2DM, kidney disease, their
associated conditions and complications.
The Western Desert Kidney Health project (WDKHP) was an innovative research
project that grew from the despair of the Aboriginal people of the Goldfields of Western
Australia and their desire to understand more about diabetes and renal disease to
reduce the effects these diseases are having in their communities.
Aims
The aims of the WDKHP were
1) To develop and evaluate community education and community development
strategies to reduce the prevalence of the risk factors for T2DM and kidney
disease, using a community arts for community development model.
2) To determine the prevalence of type 2 diabetes (T2DM), kidney disease and the
risk factors for these diseases in Aboriginal adults and children in a remote area
of Western Australia
3) To compare with prevalence rates for non-Aboriginal adults and children living
in the same locations
4) To compare those prevalence rates with national rates
5) To determine the age at which the risk factors are appearing
Methods
The WDKHP was a community based participatory research project featuring annual
cross sectional surveys over 3 years. It was conducted in 5 towns and 5 remote
Aboriginal communities over lands of people of Western Desert Language groups –
primarily Wongutha, Mulba-Ngadu and Anagu-Pitjantjatjara language groups.
Participation was offered to all people regardless of age or ethnicity.
The project involved Aboriginal researchers embedded in the community and extensive
consultation and involvement of these communities with a pilot project to demonstrate
the methods to the communities.
A mobile research team made up of Aboriginal researchers, collaborating researchers,
artists and medical students, spent 2 to 3 weeks annually for 3 years, starting in 2010,
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in each of the study communities. Data collection included personal and family medical
history, clinical assessment and investigations using point-of-care machines.

Results
Participation was good - 79% (n=818/1035) of the Aboriginal population (175 men, 250
women, 393 children) and 12% (n=297/2475) of non-Aboriginal population (74 men,
114 women, 109 children) completed at least one health assessment
The WDKHP found higher than predicted rates of T2DM, hypertension, haematuria and
elevated ACR in Aboriginal and non-Aboriginal adults and children. Prevalence of
overweight and obesity were similar to national rates. Risk factors were found in
children as young as 2 years.
A difference in rates of disease between Aboriginal and non-Aboriginal people was not
as marked as predicted. There was no difference between Aboriginal and non-
Aboriginal children and no difference between participants living in towns compared to
those living in remote communities. Aboriginal women were the highest risk group.
More than 95% of Aboriginal participants had spent most of their lives in rural or remote
areas but 91.5% of non-Aboriginal participants had grown up in urban settings.
More than 400 people (37% of participants) responded to evaluation questionnaires.
There was no negative feedback about the arts based strategies or the project in
general, except for expressions of dismay that the project was limited to 3 years.
Qualitative data demonstrated community change in behaviour although the study
period was too short to demonstrate change in the biomedical markers.

Conclusion
Long term relationships with Aboriginal researchers embedded in the community, with
cultural authority, who understand the cultural nuances and are able to engage the
community leaders were a critical feature of this research.
The innovative arts and community based engagement strategies contributed to good
participation and community satisfaction with the project.
The rates of T2DM, hypertension and markers for kidney disease for Aboriginal and
non-Aboriginal participants were, in general, much higher than expected suggesting
ethnicity might be less important that environmental and lifestyle factors. There was no
increase in rates of disease or the biomedical markers during the study.
More research is needed to examine potentially modifiable factors - food supply,
exercise opportunities, water quality and living conditions, offering scope for
interventions to reduce the risk and burden of these diseases.

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DVD – Introduction to the Western Desert
Kidney Health Project
This DVD will assist the reader to develop a
picture of the place and hear the voices of the
people involved in this project so that the
remainder of this thesis has meaningful context.
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