Informed, engaged communities for health

Search
Generic filters
Filter by Categories
@WePublicHealth2021
#CroakeyLIVE #Budget2021Health
#MHReform
#OutOfTheBox
#QldVotesHealth
#RCIADIC30Years
#RuralHealthJustice
#TRIPSwaiver
2021 Floods
Budget2020Health
Bushfires
codesign
community control
COVID-19
Croakey Conference News Service
#2020ResearchExcellence
#21OPCC
#BackToTheFire
#FoodGovernance2021
#GiantSteps21
#Govern4Health
#GreenHealthForum21
#HealthClimateSolutions21
#HealthReImagined
#HearMe21
#ICEM22
#IndigenousClimateJustice21
#NAISA22
#NNF2021
#RANZCP2021
#RANZCP2022
#RTP22
#SAHeapsUnfair
#ShiftingGearsSummit
#ValueBasedCare
#WCepi2021
#YHFSummit
Choosing Wisely National Meeting 2022
Equally Well 2022 Symposium
GiantSteps22
Croakey Professional Services
#CommunityControl
#COVIDthinktank21
#KidneyCareTogether
ACSQHC series
ACSQHC series 2019
ACSQHC series 2020
ACSQHC series 2021
ACSQHC series 2022
CATSINaM 25 Years
Lowitja Indigenous knowledge translation series
Croakey projects
@WePublicHealth
@WePublicHealth2020
@WePublicHealth2022
#CommunityMatters
#CoveringClimateNow
#CroakeyLIVE #USvotesHealth
#CroakeyREAD
#CroakeyVOICES
#CroakeyYOUTH
#HealthyCOP26
#HousingJusticeAus
#JusticeCOVID
#LookingLocal
#MRFFtransparency
#OutOfPocket
#TalkingTeeth
AroundTheTraps
Caring for the Frontline
COVID SNAPS
COVIDglobalMHseries
Croakey longreads
CroakeyEXPLORE
Gavin Mooney
ICYMI
Inside Story
Journal Watch
Summer Reading 2019-2020
The Conversation
The Health Wrap
TOO MUCH of a Good Thing
CroakeyGO
#CroakeyGO #NavigatingHealth
#GamblingHarms
#HeatwaveHealth
Mapping CroakeyGo
CroakeyNews
Cultural determinants of health
Digital platforms
Donor-funded journalism
Donor-funded journalism – 2020
Donor-funded journalism – 2021
Donor-funded journalism – 2022
Elections and budgets
Federal Budget 2019-20
Federal Budget 2020-21
Federal Budget 2022-23
Federal Election 2022
SA election 2022
The Election Wrap (2022)
Federal Budget 2021-22
Global health and climate change
2019-20 climate bushfire emergency
asylum seeker and refugee health
Climate emergency
disasters
Ebola
extreme weather events
flooding 2011
Flooding 2022
Global health
NHS
NSW 2022
NZ Election 2017
WHO
health
Healthcare and health reform
abortion
adverse events
Aged care
Allied healthcare
Australian Medical Association
cancer
cardiovascular disease
child health
Choosing Wisely
chronic diseases
co-payments
Cochrane Collaboration
complementary medicines
conflicts of interest
death and dying
diabetes
digital technology
disabilities
e-health
emergency departments and care
Equally Well
euthanasia
evidence-based issues
general practice
genetics
health & medical marketing
health and medical education
health and medical research
Health Care Homes
health ethics
health financing and costs
Health reform
health regulation
Health workforce
HIV/AIDS
hospitals
HRT
infectious diseases
influenza
international medical graduates
journal articles
LGBTIQ
medical marijuana
Medicare Locals
men's health
Mental health
MyHospitals website
National Commission of Audit 2014
National Health Performance Authority
naturopathy
NDIS
NHMRC
non communicable diseases
Nursing and midwifery
oral health
organ transplants
out of pocket costs
pain
palliative care
paramedics
pathology
Pharmaceutical Benefits Scheme
pharmaceutical industry
pharmacy
Pregnancy and childbirth
Primary Health Networks
Primary healthcare
private health insurance
Rural and remote health
Safety and quality of healthcare
screening
sexual health
Social media and healthcare
suicide
surgery
swine flu
telehealth
tests
TGA
trauma
women's health
youth health
Indigenous health
#CTG10
#NTRC
Acknowledgement
cultural safety
Indigenous education
Lowitja Institute
NT Intervention
social and emotional wellbeing
Uluru Statement
WA community closures
News about Croakey
Public health and population health
#PreventiveHealthStrategy
#UnmetNeedsinPublicHealth
air pollution
alcohol
consumer health matters
COVIDwrap
environmental health
Fetal Alcohol Spectrum Disorders (FASD)
food and nutrition
gambling
Government 2.0
gun control
health communications
health impact assessment
Health in All Policies
Health inequalities
health literacy
human rights
illicit drugs
injuries
legal issues
marriage equality
Media Doctor Australia
media-related issues
Monkeypox
nanny state
National Preventive Health Agency
obesity
occupational health
physical activity
plain packaging
prevention
Public health
Public interest journalism
road safety
sport
sugar tax
tobacco control
transport
vaccination
violence
Web 2.0
weight loss products
Royal Commission
Social determinants of health
commercial determinants of health
discrimination
education
Housing
justice
Justice Reinvestment
NBN
Newstart
poverty
Racism
social policy
Summer reading 2020-2021
Summer reading 2021-2022
Tasmanian election 2021
The Croakey Archives
#cripcroakey
#HealthEquity16
#HealthMatters
#IHMayDay (all years)
#IHMayDay 2014
#IHMayDay15
#IHMayday16
#IHMayDay17
#IHMayDay18
#LoveRural 2014
Croakey Conference News Service 2013 – 2019
2013 conferences
Australian Centre for Health Services Innovation Forum 2013
Australian Health Promotion Association Conference 2013
Closing the Credibility Gap 2013
CRANAplus Conference 2013
FASD Conference 2013
Health Workforce Australia 2013
International Health Literacy Network Conference 2013
NACCHO Summit 2013
National Rural Health Conference 2013
Oceania EcoHealth Symposium 2013
PHAA conference 2013
2014 conferences
#IPCHIV14
AIDA Conference 2014
Congress Lowitja 2014
CRANAplus conference 2014
Cultural Solutions - Healing Foundation forum 2014
Lowitja Institute Continuous Quality Improvement conference 2014
National Suicide Prevention Conference 2014
Racism and children/youth health symposium 2014
Rural & Remote Health Scientific Symposium 2014
2015 conferences
#CPHCEforum
#CRANAplus15
#HSR15
#NRHC15
#OTCC15
Population Health Congress 2015
2016 conferences
#AHHAsim16
#AHMRC16
#ANROWS2016
#ATSISPEP
#AusCanIndigenousWellness
#cphce2016
#CPHCEforum16
#CRANAplus2016
#IAMRA2016
#LowitjaConf2016
#PreventObesity16
#TowardsRecovery
#VMIAC16
#WearablesCEH
#WICC2016
2017 conferences
#17APCC
#ACEM17
#AIDAconf2017
#BTH20
#CATSINaM17
#ClimateHealthStrategy
#IAHAConf17
#IDS17
#LBQWHC17
#LivingOurWay
#OKtoAskAu
#OTCC2017
#ResearchTranslation17
#TheMHS2017
#VMIACConf17
#WCPH2017
Australian Palliative Care Conference
2018 conferences
#6rrhss
#ACEM18
#AHPA2018
#ATSISPC18
#CPHCE
#MHED18
#NDISMentalHealth
#Nurseforce
#OKToAsk2018
#RANZCOG18
#ResearchIntoPolicy
#VHAawards
#VMIACAwards18
#WISPC18
2019 Conferences
#ACEM19
#CPHCE19
#EquallyWellAust
#GiantSteps19
#HealthAdvocacyWIM
#KTthatWorks
#LowitjaConf2019
#MHAgeing
#NNF2019
#OKtoAsk2019
#RANZCOG19
#RANZCP2019
#ruralhealthconf
#VMIAC2019
#WHOcollabAHPRA
Croakey Professional Services archive
#CommunityControl Twitter Festival
Croakey projects archive
#IndigenousHealthSummit
#IndigenousNCDs
#JustClimate
#JustJustice
Croakey register of influence
Croakey Register of Influencers in Public Health
Croakey Register of Unreleased Documents
Naked Doctor
Poems of Public Health
Summer Reading 2016-2017
Summer Reading 2017-2018
The Koori Woman
Wonky Health
CroakeyGO archive 2017 – 2018
CroakeyGo 2017
#CroakeyGO Adelaide 2017
#CroakeyGO Melbourne 2017
#CroakeyGO Newcastle 2017
#CroakeyGO Sydney 2017
CroakeyGo 2018
#CroakeyGO #QuantumWords 2018
#CroakeyGO #VicVotes 2018
#CroakeyGO Albury 2018
#CroakeyGO Callan Park 2018
#CroakeyGO Carnarvon 2018
#CroakeyGO Marrickville 2018
#CroakeyGO Palm Island 2018
Elections and Budgets 2013 – 2019
#AusVotesHealth Twitter Festival 2019
#Health4NSW
#HealthElection16
Federal Budget 2009-2010
Federal Budget 2010
Federal Budget 2011
Federal Budget 2012-2013
Federal Budget 2013-14
Federal Budget 2014-15
Federal Budget 2015-16
Federal Budget 2016-17
Federal Budget 2017/18
Federal Budget 2018-19
Federal Election 2010
Federal Election 2013
Federal Election 2016
Federal Election 2019
NSW Election 2015
NSW Election 2019
NT Election 2016
Qld Election 2015
Victorian Election 2014
WA election 2021
Support non-profit public interest journalism
Search
Generic filters
Filter by Categories
@WePublicHealth2021
#CroakeyLIVE #Budget2021Health
#MHReform
#OutOfTheBox
#QldVotesHealth
#RCIADIC30Years
#RuralHealthJustice
#TRIPSwaiver
2021 Floods
Budget2020Health
Bushfires
codesign
community control
COVID-19
Croakey Conference News Service
#2020ResearchExcellence
#21OPCC
#BackToTheFire
#FoodGovernance2021
#GiantSteps21
#Govern4Health
#GreenHealthForum21
#HealthClimateSolutions21
#HealthReImagined
#HearMe21
#ICEM22
#IndigenousClimateJustice21
#NAISA22
#NNF2021
#RANZCP2021
#RANZCP2022
#RTP22
#SAHeapsUnfair
#ShiftingGearsSummit
#ValueBasedCare
#WCepi2021
#YHFSummit
Choosing Wisely National Meeting 2022
Equally Well 2022 Symposium
GiantSteps22
Croakey Professional Services
#CommunityControl
#COVIDthinktank21
#KidneyCareTogether
ACSQHC series
ACSQHC series 2019
ACSQHC series 2020
ACSQHC series 2021
ACSQHC series 2022
CATSINaM 25 Years
Lowitja Indigenous knowledge translation series
Croakey projects
@WePublicHealth
@WePublicHealth2020
@WePublicHealth2022
#CommunityMatters
#CoveringClimateNow
#CroakeyLIVE #USvotesHealth
#CroakeyREAD
#CroakeyVOICES
#CroakeyYOUTH
#HealthyCOP26
#HousingJusticeAus
#JusticeCOVID
#LookingLocal
#MRFFtransparency
#OutOfPocket
#TalkingTeeth
AroundTheTraps
Caring for the Frontline
COVID SNAPS
COVIDglobalMHseries
Croakey longreads
CroakeyEXPLORE
Gavin Mooney
ICYMI
Inside Story
Journal Watch
Summer Reading 2019-2020
The Conversation
The Health Wrap
TOO MUCH of a Good Thing
CroakeyGO
#CroakeyGO #NavigatingHealth
#GamblingHarms
#HeatwaveHealth
Mapping CroakeyGo
CroakeyNews
Cultural determinants of health
Digital platforms
Donor-funded journalism
Donor-funded journalism – 2020
Donor-funded journalism – 2021
Donor-funded journalism – 2022
Elections and budgets
Federal Budget 2019-20
Federal Budget 2020-21
Federal Budget 2022-23
Federal Election 2022
SA election 2022
The Election Wrap (2022)
Federal Budget 2021-22
Global health and climate change
2019-20 climate bushfire emergency
asylum seeker and refugee health
Climate emergency
disasters
Ebola
extreme weather events
flooding 2011
Flooding 2022
Global health
NHS
NSW 2022
NZ Election 2017
WHO
health
Healthcare and health reform
abortion
adverse events
Aged care
Allied healthcare
Australian Medical Association
cancer
cardiovascular disease
child health
Choosing Wisely
chronic diseases
co-payments
Cochrane Collaboration
complementary medicines
conflicts of interest
death and dying
diabetes
digital technology
disabilities
e-health
emergency departments and care
Equally Well
euthanasia
evidence-based issues
general practice
genetics
health & medical marketing
health and medical education
health and medical research
Health Care Homes
health ethics
health financing and costs
Health reform
health regulation
Health workforce
HIV/AIDS
hospitals
HRT
infectious diseases
influenza
international medical graduates
journal articles
LGBTIQ
medical marijuana
Medicare Locals
men's health
Mental health
MyHospitals website
National Commission of Audit 2014
National Health Performance Authority
naturopathy
NDIS
NHMRC
non communicable diseases
Nursing and midwifery
oral health
organ transplants
out of pocket costs
pain
palliative care
paramedics
pathology
Pharmaceutical Benefits Scheme
pharmaceutical industry
pharmacy
Pregnancy and childbirth
Primary Health Networks
Primary healthcare
private health insurance
Rural and remote health
Safety and quality of healthcare
screening
sexual health
Social media and healthcare
suicide
surgery
swine flu
telehealth
tests
TGA
trauma
women's health
youth health
Indigenous health
#CTG10
#NTRC
Acknowledgement
cultural safety
Indigenous education
Lowitja Institute
NT Intervention
social and emotional wellbeing
Uluru Statement
WA community closures
News about Croakey
Public health and population health
#PreventiveHealthStrategy
#UnmetNeedsinPublicHealth
air pollution
alcohol
consumer health matters
COVIDwrap
environmental health
Fetal Alcohol Spectrum Disorders (FASD)
food and nutrition
gambling
Government 2.0
gun control
health communications
health impact assessment
Health in All Policies
Health inequalities
health literacy
human rights
illicit drugs
injuries
legal issues
marriage equality
Media Doctor Australia
media-related issues
Monkeypox
nanny state
National Preventive Health Agency
obesity
occupational health
physical activity
plain packaging
prevention
Public health
Public interest journalism
road safety
sport
sugar tax
tobacco control
transport
vaccination
violence
Web 2.0
weight loss products
Royal Commission
Social determinants of health
commercial determinants of health
discrimination
education
Housing
justice
Justice Reinvestment
NBN
Newstart
poverty
Racism
social policy
Summer reading 2020-2021
Summer reading 2021-2022
Tasmanian election 2021
The Croakey Archives
#cripcroakey
#HealthEquity16
#HealthMatters
#IHMayDay (all years)
#IHMayDay 2014
#IHMayDay15
#IHMayday16
#IHMayDay17
#IHMayDay18
#LoveRural 2014
Croakey Conference News Service 2013 – 2019
2013 conferences
Australian Centre for Health Services Innovation Forum 2013
Australian Health Promotion Association Conference 2013
Closing the Credibility Gap 2013
CRANAplus Conference 2013
FASD Conference 2013
Health Workforce Australia 2013
International Health Literacy Network Conference 2013
NACCHO Summit 2013
National Rural Health Conference 2013
Oceania EcoHealth Symposium 2013
PHAA conference 2013
2014 conferences
#IPCHIV14
AIDA Conference 2014
Congress Lowitja 2014
CRANAplus conference 2014
Cultural Solutions - Healing Foundation forum 2014
Lowitja Institute Continuous Quality Improvement conference 2014
National Suicide Prevention Conference 2014
Racism and children/youth health symposium 2014
Rural & Remote Health Scientific Symposium 2014
2015 conferences
#CPHCEforum
#CRANAplus15
#HSR15
#NRHC15
#OTCC15
Population Health Congress 2015
2016 conferences
#AHHAsim16
#AHMRC16
#ANROWS2016
#ATSISPEP
#AusCanIndigenousWellness
#cphce2016
#CPHCEforum16
#CRANAplus2016
#IAMRA2016
#LowitjaConf2016
#PreventObesity16
#TowardsRecovery
#VMIAC16
#WearablesCEH
#WICC2016
2017 conferences
#17APCC
#ACEM17
#AIDAconf2017
#BTH20
#CATSINaM17
#ClimateHealthStrategy
#IAHAConf17
#IDS17
#LBQWHC17
#LivingOurWay
#OKtoAskAu
#OTCC2017
#ResearchTranslation17
#TheMHS2017
#VMIACConf17
#WCPH2017
Australian Palliative Care Conference
2018 conferences
#6rrhss
#ACEM18
#AHPA2018
#ATSISPC18
#CPHCE
#MHED18
#NDISMentalHealth
#Nurseforce
#OKToAsk2018
#RANZCOG18
#ResearchIntoPolicy
#VHAawards
#VMIACAwards18
#WISPC18
2019 Conferences
#ACEM19
#CPHCE19
#EquallyWellAust
#GiantSteps19
#HealthAdvocacyWIM
#KTthatWorks
#LowitjaConf2019
#MHAgeing
#NNF2019
#OKtoAsk2019
#RANZCOG19
#RANZCP2019
#ruralhealthconf
#VMIAC2019
#WHOcollabAHPRA
Croakey Professional Services archive
#CommunityControl Twitter Festival
Croakey projects archive
#IndigenousHealthSummit
#IndigenousNCDs
#JustClimate
#JustJustice
Croakey register of influence
Croakey Register of Influencers in Public Health
Croakey Register of Unreleased Documents
Naked Doctor
Poems of Public Health
Summer Reading 2016-2017
Summer Reading 2017-2018
The Koori Woman
Wonky Health
CroakeyGO archive 2017 – 2018
CroakeyGo 2017
#CroakeyGO Adelaide 2017
#CroakeyGO Melbourne 2017
#CroakeyGO Newcastle 2017
#CroakeyGO Sydney 2017
CroakeyGo 2018
#CroakeyGO #QuantumWords 2018
#CroakeyGO #VicVotes 2018
#CroakeyGO Albury 2018
#CroakeyGO Callan Park 2018
#CroakeyGO Carnarvon 2018
#CroakeyGO Marrickville 2018
#CroakeyGO Palm Island 2018
Elections and Budgets 2013 – 2019
#AusVotesHealth Twitter Festival 2019
#Health4NSW
#HealthElection16
Federal Budget 2009-2010
Federal Budget 2010
Federal Budget 2011
Federal Budget 2012-2013
Federal Budget 2013-14
Federal Budget 2014-15
Federal Budget 2015-16
Federal Budget 2016-17
Federal Budget 2017/18
Federal Budget 2018-19
Federal Election 2010
Federal Election 2013
Federal Election 2016
Federal Election 2019
NSW Election 2015
NSW Election 2019
NT Election 2016
Qld Election 2015
Victorian Election 2014
WA election 2021

Dreaming big: building a movement in Aboriginal kidney healthcare

Introduction: Aboriginal kidney patients are leading a ground-breaking research project where their experiences, resilience and expertise are re-shaping kidney health research and clinical services and challenging health systems to do better.

This article is the second in a series sponsored by the Adelaide-based Aboriginal Kidney Care Together – Improving Outcomes Now (AKction) project, and edited by AKction chief investigators Dr Kim O’Donnell, a Malyangapa/Barkindji woman, and Kelli Owen, a Kaurna, Narungga and Ngarrindjeri woman.

Readers are advised this series mentions people who have passed; we publish their names and photos with permission, respect and acknowledgement of their legacy as kidney warriors.


Croakey Professional Services writes:

The odds were against the call ever coming, so it was a shock that night in 2016 when Kelli Owen’s phone rang just before midnight to tell her that, after three years on the kidney transplantation wait list and decades of chronic disease, a kidney had become available for transplant.

Owen, a 48-year-old Kaurna, Narungga and Ngarrindjeri woman, teacher and mother of five, rushed from her home in Murray Bridge, south-east of Adelaide, for the life-saving operation that took place the next day – May 26, National Sorry Day.

On the other end of the phone that night was Associate Professor Shilpa Jesudason, a Royal Adelaide Hospital nephrologist, who went on to be part of Owen’s transplant care team.

“Shilpa wanted to know whether I would accept the offer and I said, ‘hell yes, get me there!’,” Owen remembers. “I didn’t even have my bag packed because I didn’t think it was ever going to happen for me,” she said.

The pair next met three years later when Jesudason, by then the national clinical director of Kidney Health Australia, attended Owen’s keynote address to the World Congress of Nephrology’s (WCN) Satellite Symposia on First Nations Kidney Health in Naarm (Melbourne).

Soon after they were co-chairing the National Indigenous Kidney Transplantation Taskforce (NIKTT) Community Engagement Committee and working together in leadership roles on the ground-breaking Aboriginal Kidney Care Together – Improving Outcomes Now (AKction) project in Adelaide.

Owen’s chances of being offered a kidney that night in 2016 were low because of a range of personal and clinical factors. But another critical reason is the systemic racism and lack of cultural safety in the health system that contributes to Aboriginal and Torres Strait Islander people with end-stage kidney disease being less likely to be wait-listed for transplantation and therefore up to ten times less likely to receive a kidney transplant.

This is despite disproportionately higher rates of end-stage kidney disease among Aboriginal and Torres Strait Islander people, compared with non-Indigenous Australians, particularly in remote areas, where the incidence is up to 18 to 20 times higher than in metropolitan areas.

“If we had peer navigators to help my First Nations brothers and sisters navigate the system and culturally appropriate health services, it would be a different story,” Owen said.

Karrendi – rise up

It’s these terrible inequities that drive the work of the AKction project, now led by Dr Kim O’Donnell, a Malyangapa/Barkindji woman and health researcher, with non-Indigenous researcher Dr Janet Kelly.

Funded under a $2 million Ideas Grant from the National Health and Medical Research Council, the game-changing project is hailed for its Aboriginal and Torres Strait Islander leadership, autonomy and governance and the trusted relationships it has built with non-Indigenous clinicians and researchers.

The group photographed in 2021: Amy Graham, Nari Sinclair, Dr Kim O’Donnell, Kelli Owen, Kuranye Owen, Dr Samantha Bateman, Melissa Arnold-Chamney, Jared Kartinyeri, Kynesha Temple Varcoe, Dr Shilpa Jesudason, Dr Janet Kelly

Leading the work is a small group of Aboriginal patient experts, who are either on dialysis, have had kidney transplants or are waiting for transplants and form the AKction Reference Team, which is now being used as a model for similar bodies across Australia through NIKTT.

“We are leading those conversations, sitting at the same table with the academics and specialists who are able to open doors and change the way things are being done,” said Owen, who is a Reference Group member and a chief investigator.

“This will be our Brave Space together,” the AKction project declares, outlining four sub research themes that centre the voices of patient experts:

  1. Indigenous governance: “We are more than our disease”
  2. Kidney journey mapping: “No-one else should have to experience this”
  3. Support for kidney patients: “We know what it is like”
  4. Cultural safety in kidney care: “Sometimes they just don’t get it”.

See this slide representing Karrendi – rise up.

Patient journeys

Owen’s negative experiences of healthcare began when she contracted tuberculosis as a young girl. She was put on a “cocktail of meds” and ended up hating hospitals and nurses. When she was told, at 19 years of age and with few symptoms, that she had kidney disease, she “didn’t want to know”.

A decade later Owen was told her kidneys were functioning at just 30 percent of capacity and that she needed acute care. Handed a bunch of DVDs and pamphlets to explain her condition, the gaps in education and support for Aboriginal and Torres Strait Islander patients were clear for the then primary school teacher.

“I didn’t see myself in any of that pre-education,” she said. “There were no Aboriginal people there, despite our people making up such high numbers in chronic kidney disease.”

Later, living back on Country in Murray Bridge, the stresses of her illness hit hard. She travelled to Adelaide three times a week for dialysis, cutting into her work hours and disrupting family life. The transport costs alone were “astronomical”.

“I started to think, ‘if this is happening to me from a country area, what is happening to my First Nations brothers and sisters in remote areas?’ Lots of questions started to formulate in my head while I was sitting on that dialysis machine.”

Those questions continued after her transplant, needing to live with relatives in Adelaide while completing weeks of daily clinical checks, cared for by her teenage son.

She began to ask who should be held accountable for such poor healthcare for her people and why she had rarely seen Aboriginal or Torres Strait Islander health professionals in her journey. “I was thinking, ‘our people are smart, where are they, where are the career pathways?”

Then this year the ground shifted again, when her 17-year-old son Kuranye (a Kaurna word meaning rainbow) was diagnosed with the same kidney condition – Alport syndrome – that she has.

While his diagnosis is heart-breaking for the family, Owen is hopeful that, despite the many gaps she is already seeing in care for young Aboriginal and Torres Strait Islander kidney patients, his kidney journey will be better than hers.

“Knowing the questions to ask puts me in a different position now,” she says.

Kuranye and Kelli, who always has her son’s back. He is about to undergo surgery for a fistula.

Time to thrive

Rhanee Lester, another Reference Team member and chief investigator, talks about chronic kidney disease as a “constant rollercoaster”, physically, socially, emotionally.

The 35-year-old former youth worker and children’s book author says the disease is often very isolating. “You feel alone, like you’re in your own little bubble.”

An Adnyamathanha woman from Port Augusta, more than 300 kilometres north of Adelaide, Lester knows well the burdens faced by many Aboriginal and Torres Strait Islander patients, with 78 percent having to relocate to cities for dialysis, away from Country and community, often with devastating impacts on their wellbeing and that of their families.

Many, she says, are Elders or others with cultural, family and financial responsibilities, “doing a lot of caring of other people”. These obligations “almost take precedence over their own health” — something few health services or professionals factor in when they talk about treatment ‘compliance’.

Lester remembers vividly getting the results of her first kidney function test in 2004. She was told to rush to hospital, where she was led straight to the high dependency unit. At first she thought this was because there were not enough beds in the general wards, until the seriousness of the diagnosis sank in.

Despite the shock and stress, it was a relief to finally know what was wrong: “I thought, ‘okay, this is what I’ve got, what do I have to do to survive?’ I went into survival mode.”

Now she wants more for herself and other Aboriginal and Torres Strait Islander kidney patients, to not just survive but “to thrive” — which is what makes the AKction2 project so full of promise and strength for everyone involved.

“We’ve been asked to dream big,” Lester says, inspired to be part of a team with the power to make change, to sit at decision-making tables in a process that feels safe and respectful and that acknowledges the strength and resilience of its patient experts.

Owen talks about the relief and comfort she felt at the first meeting in 2019 of the AKction Reference Group. Its members were able to yarn, with no pressure from a constrained agenda. Their ‘terms of reference’ was renamed ‘the way we work together’.

“I just felt like I was at home with my people,” she said.

Owen laughs that in the early days she did not understand the differences in research roles. But AKction has since opened her eyes to decolonising methods, of “how important research is for us, doing it our way, with our people”, after a history where “we haven’t been a part of the research, we’ve just been the research, talked to and talked at”.

“Now we’ve flipped that,” she says, talking about AKction as a “movement” where “it feels like the wheels are all moving together”.

Painting kidney journeys, a yarning session, Port Augusta, 2019

Shifting Gears

That shift is driving real change in care in South Australia and informing national clinical guidelines.

Kanggawodli (meaning Caring House in Kaurna), an Aboriginal-managed SA Health hostel in the inner northern Adelaide suburb of Dudley Park is now home to some of that powerful change.

In response to AKction’s advocacy, two dialysis machines were installed in the hostel that provides primary healthcare as well as accommodation for patients from regional and remote areas— a first for an Aboriginal hostel in Australia. This means remote and regional community members staying there can have dialysis in familiar and culturally safe ways, without needing to travel to the more ‘unfriendly’ environment of a metropolitan hospital.

Kanggawodli represents a breakthrough in better care, according to Dr Stephen McDonald, senior nephrologist at the Royal Adelaide Hospital and long-time Clinical Director of Renal Services for the Country Health SA, who has also been part of AKction since its early days and has worked alongside Kelly and O’Donnell.

McDonald had a “light bulb moment” nearly a decade ago when a mobile dialysis ‘bus’ was introduced in the APY lands and he saw what it meant for patients to go back on Country for short periods of time. They were able to fulfil cultural commitments, to be part of their own communities, and to undergo dialysis surrounded by kids and grandkids.

McDonald later co-authored a research paper on the initiative, describing the “grief and loss” many patients felt from having to travel far from home for treatment in a clinical environment.

It was a “tipping point” for him in developing a better understanding of culturally safe care and the need to turn a critical gaze on the system when individuals or communities struggled to access healthcare or did poorly in seemingly high quality facilities.

Kanggawodli, which has its dialysis chairs in the middle of the hostel’s dining room, is “absolutely the next development in that”.

“If we truly want to change what happens and improve services, we have to change what we do,” McDonald said.

“AKction has changed the way we are thinking about how we provide services, how we talk, and how we refer to and approach problems.”

This article was written for Croakey Professional Services by Marie McInerney and edited by Croakey editor Melissa Sweet and AKction chief investigators Dr Kim O’Donnell, a Malyangapa/ Barkindji woman and health researcher, and Kelli Owen, Kaurna, Narungga and Ngarrindjeri woman, the Community Engagement Coordinator for NIKTT.

The series was conceptualised and sponsored by the AKction project, which had final say over the content.

Please cite this article as: O’Donnell, K, Owen, K (Eds). Dreaming big: building a movement in Aboriginal kidney healthcare. On Kaurna Yarta (Adelaide, South Australia). Croakey Health Media, 2021.

Acknowledgement of Country

We know this land here is Ngarrindjeri land. When we tread we should think of the Ngarrindjeri people. Photo by Kelli Owen.

Ngarrindjeri acknowledgement

Nankeri nanggi

Ngarni ngelun alyenik ruwi-elen Ngarrindjeri Ruwi

Ya:ral angan towun ngarni-idal Ngarrindjeri palak

Ngarrindjeri-ar watjun mulumi ngelerumi ruwald

Kar yamalai palak alyenik ruwald

Ngarnikung-un ngapald-ar, kaldowinyeri erai

Namawi nglelurumi elun piltenggi

Kunthun-ap Nguni kaylan

***

Good day,

We know this land here is Ngarrindjeri land

When we tread we should think of the Ngarrindjeri people

The Ngarrindjeri have sacred knowledge of the land

They are the first custodians of this land

We respect the Ngarrindjeri Elders of long ago

Our knowledge is strong

I’m glad you all are here


Croakey Professional Services help generate funds to sustain our public interest journalism activities, and also aim to provide a useful service to our readers. To find out more about the range of services on offer, see here.

 

 

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Search by: Categories or tags

Search
Generic filters
Filter by Categories
@WePublicHealth2021
#CroakeyLIVE #Budget2021Health
#MHReform
#OutOfTheBox
#QldVotesHealth
#RCIADIC30Years
#RuralHealthJustice
#TRIPSwaiver
2021 Floods
Budget2020Health
Bushfires
codesign
community control
COVID-19
Croakey Conference News Service
#2020ResearchExcellence
#21OPCC
#BackToTheFire
#FoodGovernance2021
#GiantSteps21
#Govern4Health
#GreenHealthForum21
#HealthClimateSolutions21
#HealthReImagined
#HearMe21
#ICEM22
#IndigenousClimateJustice21
#NAISA22
#NNF2021
#RANZCP2021
#RANZCP2022
#RTP22
#SAHeapsUnfair
#ShiftingGearsSummit
#ValueBasedCare
#WCepi2021
#YHFSummit
Choosing Wisely National Meeting 2022
Equally Well 2022 Symposium
GiantSteps22
Croakey Professional Services
#CommunityControl
#COVIDthinktank21
#KidneyCareTogether
ACSQHC series
ACSQHC series 2019
ACSQHC series 2020
ACSQHC series 2021
ACSQHC series 2022
CATSINaM 25 Years
Healthdirect Australia series 2019
Lowitja Indigenous knowledge translation series
Croakey projects
@WePublicHealth
@WePublicHealth2020
@WePublicHealth2022
#CommunityMatters
#CoveringClimateNow
#CroakeyLIVE #USvotesHealth
#CroakeyREAD
#CroakeyVOICES
#CroakeyYOUTH
#HealthyCOP26
#HousingJusticeAus
#JusticeCOVID
#LookingLocal
#MRFFtransparency
#OutOfPocket
#TalkingTeeth
AroundTheTraps
Caring for the Frontline
COVID SNAPS
COVIDglobalMHseries
Croakey longreads
CroakeyEXPLORE
Gavin Mooney
ICYMI
Inside Story
Journal Watch
Summer Reading 2019-2020
The Conversation
The Health Wrap
TOO MUCH of a Good Thing
CroakeyGO
#CroakeyGO #NavigatingHealth
#GamblingHarms
#HeatwaveHealth
Mapping CroakeyGo
CroakeyNews
Cultural determinants of health
Digital platforms
Donor-funded journalism
Donor-funded journalism – 2020
Donor-funded journalism – 2021
Donor-funded journalism – 2022
Elections and budgets
Federal Budget 2019-20
Federal Budget 2020-21
Federal Budget 2022-23
Federal Election 2022
SA election 2022
The Election Wrap (2022)
Federal Budget 2021-22
Global health and climate change
2019-20 climate bushfire emergency
asylum seeker and refugee health
Climate emergency
disasters
Ebola
extreme weather events
flooding 2011
Flooding 2022
Global health
NHS
NSW 2022
NZ Election 2017
WHO
health
Healthcare and health reform
abortion
adverse events
Aged care
Allied healthcare
Australian Medical Association
cancer
cardiovascular disease
child health
Choosing Wisely
chronic diseases
co-payments
Cochrane Collaboration
complementary medicines
conflicts of interest
death and dying
diabetes
digital technology
disabilities
e-health
emergency departments and care
Equally Well
euthanasia
evidence-based issues
general practice
genetics
health & medical marketing
health and medical education
health and medical research
Health Care Homes
health ethics
health financing and costs
Health reform
health regulation
Health workforce
HIV/AIDS
hospitals
HRT
infectious diseases
influenza
international medical graduates
journal articles
LGBTIQ
medical marijuana
Medicare Locals
men's health
Mental health
MyHospitals website
National Commission of Audit 2014
National Health Performance Authority
naturopathy
NDIS
NHMRC
non communicable diseases
Nursing and midwifery
oral health
organ transplants
out of pocket costs
pain
palliative care
paramedics
pathology
Pharmaceutical Benefits Scheme
pharmaceutical industry
pharmacy
Pregnancy and childbirth
Primary Health Networks
Primary healthcare
private health insurance
Rural and remote health
Safety and quality of healthcare
screening
sexual health
Social media and healthcare
suicide
surgery
swine flu