SCHOOL OF PUBLIC HEALTH

Can a white Aussie woman ‘get it’?‘

Liz Rix RN Hons PhDUniversity Centre for Rural HealthSchool of Public Health University of Sydney, Lismore, NSW, Australia

Using an Indigenist paradigm to inform culturally sensitive mainstream renal services for Aboriginal peoples in rural Australia

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A mixture of methods based on:•Indigenist research paradigm•Multilayered ‘reflexive practice’. Tool: Regular journaling and reflection throughout the study•Principles of Community based participatory research•‘Yarning’ and storytelling •Community reference group (Aboriginal steering committee)

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Research Methodology

SELF

Unpacking white privilege: not a comfortable journey!

Multiple roles and ‘blurred boundaries’: Dialysis nurse; researcher; partner of renal patient

Although I know it is prejudiced and ‘middle class’ I find myself judging differences between Aboriginal people and ‘us’. I’m witnessing my own feelings of superiority and whiteness, and feeling deeply ashamed. I thought I was above all that. But now I see that deep down I have also been like the nurses I call racist. (Journal entry, 13/04/2010)

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Reflexive practice: 1st layer

Where do I begin to find a methodology that will give participants an

authentic voice and result in real, ongoing improvements in their day to day

lives as dialysis patients living in an alien biomedical world? (Journal entry,

2/3/2010).

“Talking with an Elder today, I was struck by his ability to truly listen to

my words. Then I noticed how he did not speak until he had thought about

what I had said, giving me a thoughtful response” (Journal entry,

2/3/2010).

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Reflective journaling

INTERPERSONAL

Examining communication styles: verbal and non-verbal

Am I seen as just another white ‘do-gooder’?

Whilst I truly enjoy the company of Aboriginal people, am I silently patronizing in my approach? Can I truly say that I am aware of my own racially infused attitudes? Do these attitudes come through to Aboriginal people in both my spoken and unspoken communication style? (Journal entry, 5/06/2010)

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Reflexive practice: 2nd layer

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Power & unequal relationships

• Power issues from my dual roles as researcher/nurse partially addressed via my relationship as partner of man with kidney disease

• Still work to be done to address power imbalances

• Awareness of colonisation and subsequent trauma: ‘Stolen Generations’; extreme racism; disrespect; dis-empowerment; Eurocentric attitudes and judgement;

• Positioning within the study

• Reciprocity the key

• Then I ‘GO IT’

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Ngalunga Booloonj

Bundjalung for:Our kidneys

Community reference group Elders, patients & Aboriginal Health Workers

Role: Cultural guidance & mentoring (or: Kept researcher’s big white foot out of her big white mouth!)

How do we ensure that this group is a true research collaboration? We need constant vigilance for it to be a real partnership that enacts the principles of reciprocity, respect, consultation, inclusion and sharing . . . I must continue to follow advice of Elders and talk less, listen more. (Journal entry, 17/4/2011)

How do I switch off my renal nurse voice when wearing my researcher hat? Or maybe I shouldn’t, just be me and all that my relationality to this project brings (Journal entry, 3/3/2011).

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Reflective journaling

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Insider/outsider issues

Complexity of multiple roles

•Renal nurse caring for patients in the study and working with healthcare providers who were also interviewed.

•Researcher conducting the study and implementing new and ‘out there’ methods

•Partner of a man with kidney disease who will one day face dialysis/juggling emotional ‘noise’ and conflicts from working very ‘close to home’

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Relational accountability

Relational accountability to:

1.Research participants: Aboriginal patients & health care providers

2.Co-investigators/doctoral supervisory Team

3.Conduct of the study

4.Co workers in nursing and research

5.Co-creators of new knowledge

6.Family & friends

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The three Rs…..

RESPECTFor: participants; their stories; the Elders; families; culture; time; place; preferences for treatment options; their country

RESPONSIBILITYTo: participants; research methods; supervisory panel; funding providers; my co-authors; Elders; patients; my partner; my family

RECIPROCITYIn all aspects of life: research, nursing; stories; practical needs ie. recompensing for time, provision of food & transport etc., humour, fun …..

Health systems reflexivity

Systemic racism or residual racism from the recent past

Victim blaming and ‘othering’

Patients prioritising family/cultural obligations versus clinicians’ judgment of treatment ‘non-compliance’

I was horrified to hear ***** telling a patient that she should ‘get with the program and forget about her family’s crap if she wanted to live’. He did not even bother to ask her why she had missed dialysis, just assumed it was her fault. (Journal entry, 26/09/2008)

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Reflective journaling: 3rd Layer

Health systems reflexivity

An Aboriginal woman on dialysis had extreme levels of

physical, emotional and spiritual pain. Like so many people

in constant pain, she dealt with this pain by substance

abuse a lot of the time, using pot and high doses of

prescription drugs to get through it all. There was

judgment from staff around her drug use, with little

empathy or respect. (Journal entry, 26/05 2010).

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Reflective journaling: 3rd Layer

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Figure 1. Multi-layered “reflexive practice” used in the study

Supervision Community Reference Group

SELF (Relationship to Research)

INTERPERSONAL (Relationship to

Participants)

HEALTH SYSTEM (Participant’s

relationship to)

Reciprocity

Power issues & unequal relationships

Straight talk & humour

Unpacking white privilege

Victim blaming &‘othering’ Hospital as

an alien place

Journaling

Wife of renal patient

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More reflective journaling

I find Shawn and his work so inspiring and feel that his

style is more mine than any of the other academics I am

exposed to via the uni. My rebellious nature is attracted

to his style of individuality whilst still being true to his

Indigenous roots. Shawn feels that I can call myself an

Indigenist even though I am a white woman.

(10th February 2011)

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Artist:Patsy ‘Bundjalahm’

Nagas

The journey of Aboriginal people on haemodialysis

in rural New South Wales,

Australia

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http://www.youtube.com/watch?v=4otrk7ZBIAc&feature=youtu.be

Policy Implications

Can a white nurse get it? ‘Reflexive practice’ and thenon-Indigenous clinician/researcher working with Aboriginal people EF Rix, L Barclay, S Wilson, Rural and Remote Health 14: 2679. (Online) 2014.

Service providers’ perspectives, attitudes and beliefs on health services delivery for Aboriginal people receiving haemodialysis in rural Australia: a qualitative study. Rix, EF, Barclay, L, Wilson, S, Stirling, J, Tong, A. BMJ Open 2013 3: doi: 10.1136/bmjopen-2013-003581

The perspectives of Aboriginal patients and their healthcare providers on improving the quality of hemodialysis services: a qualitative study. Rix EF, Barclay L, Stirling, J., Tong, A., Wilson S. 2014 Hemodialysis International Published on-line 25th July 2014.

.“Beats the alternative but it messes up your life”: Aboriginal people’s experience of haemodialysis in rural Australia. Rix EF, Barclay L, Wilson S., Stirling, J., Tong, A., 2014: BMJ Open: In-Press

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“Who can hear the voice of the colonized? Who might listen with

authenticity, with sensitivity, with an open mind”(Adler, 2004:107 ) 

“Rarely do the people studied mistake the investigator for one of their

own...But if you are there for some time, a living, reacting fellow human

being, rather than a human pretending to be a disembodied fly on the wall,

the people you are studying will create a space, a role for you” (Cassell, 2002:180 )