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Cultural bias in kidney care and transplantation: review and recommendations to improve kidney care for Aboriginal and Torres Strait Islander people

Jaquelyne T Hughes, Kelli J Owen, Janet Kelly, Katie Cundale, Sandawana William Majoni, Matilda D'Antoine and Stephen P McDonald
Med J Aust 2023; 219 (8): S11-S14. || doi: 10.5694/mja2.52110
Published online: 16 October 2023

Inequities persist for Aboriginal and Torres Strait Islander people accessing health services in Australia, as evidenced by kidney health outcomes and the consistently lower rate of access to kidney transplantation experienced by Aboriginal and Torres Strait Islander people.1 The Australian Government has endeavoured to address this persisting inequity in access to kidney transplantation by establishing the National Indigenous Kidney Transplantation Taskforce (NIKTT), and tasking them to evaluate cultural bias interventions in Australia, with a focus on kidney services. The NIKTT's objective was to develop recommendations for best practice care and support that would enable health services to provide more culturally safe care for Aboriginal and Torres Strait Islander people. In this article, we highlight the main findings and recommendations from the Cultural bias Indigenous kidney care and kidney transplantation report.2 We reflect on the resulting recommendations and highlight key elements that the NIKTT anticipates could substantially improve the cultural safety of kidney care for Aboriginal and Torres Strait Islander people across Australia.

Background to the report

Racism continues to act as a barrier to accessing and receiving appropriate health care for Aboriginal and Torres Strait Islander people in Australia.3,4,5,6 Consumers accessing kidney services have continually stressed the importance of improving the cultural safety of care.7,8,9,10 The Australian Health Practitioner Regulatory Authority released its cultural safety definition and strategy in 2022, defining culturally safe practice as the “ongoing critical reflection of health practitioner knowledge, skills, attitudes, practising behaviours and power differentials in delivering safe, accessible and responsive healthcare free of racism”.11 For the purposes of this work, cultural bias is therefore defined as any mechanism, action or inaction — from health professionals, organisations and systems – that contributes to disparate treatment, treatment outcomes, or an unsafe experience of health care for Aboriginal and Torres Strait Islander people.

To identify and evaluate what works best in addressing cultural bias in Australia, an NIKTT cultural bias working group was established. This group defined the scope and parameters of the review and evaluation, and approved the final recommendations. Based on advice from this working group, the NIKTT commissioned the Lowitja Institute, a renowned Aboriginal Community Controlled Research Organisation, to undertake the review in recognition of the need for it to be guided by Aboriginal and/or Torres Strait Islander researchers and include perspectives outside of nephrology.

The objective of the review was to understand which interventions have been utilised to address cultural bias in Australian kidney care settings. Early literature searches identified severely limited available publications. The working group and review authors therefore co‐designed a three‐part approach that included: an assessment of initiatives that had been formally evaluated across kidney health and wider health care settings, which were published in the peer‐reviewed literature; a review of kidney health‐specific grey literature; and the inclusion of perspectives of Aboriginal and Torres Strait patients and kidney health care professionals through national consultations being undertaken by the NIKTT at the same time.

The Cultural Bias Report was submitted to and approved by the Commonwealth Government in early 2022, and has since been disseminated and made public by the NIKTT.2 This work, developed during 2019–2021, also informed the Recommendations for culturally safe kidney care in First Nations Australians.12 The Cultural Bias Report, as well as a policy brief and translations of the recommendations into language more suitable for patients and communities, can be found on the NIKTT website.13 Further details of the report planning process can also be found in the NIKTT final report.14

Report findings

The Cultural Bias Report identified that there were limited formally evaluated and published initiatives that specifically addressed cultural bias in kidney transplantation or dialysis settings. A range of evaluated initiatives were identified across other health care settings, and a number of small scale initiatives were identified within kidney care settings that were not published in peer‐reviewed journals. The report authors grouped the evidence, and consequent recommendations, into four domains for action (Box 1). These domains provide a framework through which services, organisations, and governments could address cultural bias by ensuring culturally safe and equitable care is made available to Aboriginal and Torres Strait Islander people.

The first domain — Inclusion of Aboriginal and Torres Strait Islander people — identifies the necessity of privileging15 the voices and experiences of Aboriginal and Torres Strait Islander people as fundamental to effective, culturally safe interventions. Evidence found that reference groups, peer navigators, and Aboriginal and Torres Strait Islander health professionals were safe channels through which patients could provide feedback, without fear of reprisal.

The second domain — Workforce — emphasises the need to focus on the roles, support, abilities and training of both the Aboriginal and Torres Strait Islander and the non‐Indigenous workforce. Evidence in this domain found that successful initiatives valued the mastery of cultural skills, knowledge and relational networks of Aboriginal and Torres Strait Islander staff who are health professionals and bring a specific scope of practice through their specialised perspectives.

Domain three — Kidney health and kidney transplantation service delivery and models of care — highlights the importance of holistic continuity of care for clients and families to improve safety and outcomes. Addressing overall wellbeing and the specific socio‐economic situation and needs of Aboriginal and Torres Strait Islander clients, particularly transport and accommodation, were seen as critical.

Domain four — Structures and policies — outlines the importance of institutional commitment and how national guidelines, policies and strategies are necessary to ensure that change is implemented, monitored, and followed through upon. Embedded evaluation, as well as continuous quality improvement through ongoing cycles of reflection and feedback from patients, were identified as important for improving service delivery and cultural safety.

The report's domains and recommendations are listed in Box 2, mapped against the relevant National Safety and Quality Health Service (NSQHS) Standard that each relates to and addresses.16 Applying these recommendations to the NSQHS Standards illustrates how integrating the framework can create and monitor better and safer services.

Recommendations for applying culturally safe (and unbiased) practice in nephrology

The NIKTT convened a half‐day Cultural Bias Workshop in late 2021 to discuss the review's findings, the report, and its implications. Consumers, carers and members of the taskforce were invited to attend in person or online. Over 25 attendees joined, including Aboriginal and Torres Strait Islander people who were kidney transplant patients and health professionals, as well as non‐First Nations people who identified as transplantation coordinators, nephrologists, researchers, and other clinical and policy professionals. When reviewing the 14 recommendations listed within the report, the NIKTT and the workshop participants specifically recommended that five should be enacted immediately as essential steps towards effectively addressing cultural bias in kidney health settings. These actions are tangible, realistic steps that renal and transplantation units should implement to better ensure the cultural safety of services:

  • Establish Indigenous Reference Groups in every transplantation unit.
  • Support and increase the Aboriginal and Torres Strait Islander kidney health workforce.
  • Establish and fund sustainable kidney patient navigator/peer support roles.
  • Implement and evaluate comprehensive and ongoing cultural safety training programs.
  • Fund, design, implement and evaluate tailored models of care.

Moving forward with culturally safe care

For clinicians and services, a comprehensive and standardised way to identify and track cultural safety, or the lack of cultural bias, is an essential step in progressing this work, but it needs well understood measurements. The report's four domains for action could be used by renal and transplant units to undertake an initial needs analysis of services, which could then be followed by specific resources to support the health unit and patient community to move towards equitable health care practice — as guided by specific recommendations. To best support kidney clinical services to apply this approach, the domains for action have been reframed in the form of sample questions that can be used by health services to prospectively evaluate the intent and commitment of delivered care. Box 3 provides an example of questions that have been informed by the work of the taskforce to provide unbiased care.

The dearth of published research focusing on cultural safety or cultural bias in kidney health settings illustrates a gap in prioritisation within both research and practice. Health care services that work with Aboriginal and Torres Strait Islander people with kidney failure need to promote implementation and reporting of programs and research that address cultural bias and institutional racism. The creation of an archive of intervention outcomes that improve access to, and outcomes from, kidney transplantation would be an important advancement for patients.

The NIKTT believes that further studies must concentrate on research and initiatives that identify and demonstrate best practices to reduce cultural bias, so that government, service and stakeholder investment can systematically implement evidence‐based recommendations and actions.

Consumer and community engagement, tailored models of care (including patient support roles), improved workforce access to cultural safety training, and an empowered kidney workforce are tangible actions that federal, state and local organisations can implement now. By affirming the recommendations and domains for action discussed here, bodies such as the Australian Health Practitioner Regulatory Authority and the Australian Commission on Safety and Quality in Health Care could drive practice change throughout both nephrology and other health fields by setting standards and exemplifying conduct against which equitable service delivery could be measured.

Box 1 – The Cultural Bias Report framework of four domains and their sub‐domains2

Domain

Sub‐domains


Inclusion of Aboriginal and Torres Strait Islander people

  • Inclusion of family in care and decision making
  • Indigenous governance, community consultations, reference groups
  • Patient perspectives and feedback

Workforce

  • Indigenous workforce
  • Knowledge and skills of all workforce
  • Two‐way learning

Service delivery and models of care

  • Advocacy
  • Case management, referral and follow‐up
  • Collaboration
  • Communication, understanding, trust and transparency
  • Continuity of care and carer
  • Cultural safety and responsiveness
  • Flexibility
  • Health promotion, education, prevention
  • Responding to holistic health, wellbeing and socio‐economic needs

Structures and policies

  • Organisational governance, commitment, leadership and management
  • Policies, guidelines and standards
  • Physical environment
  • Resources and funding

 

Box 2 – Domains and recommendations from the Cultural Bias Report,2 mapped to corresponding National Safety and Quality Health Service (NSQHS) Standards16

 

 

NSQHS Standard


Domain

Recommendation

Clinical governance

Partnering with consumers

Comprehensive care

Communicating for safety


Inclusion of Aboriginal and Torres Strait Islander people

Establish Indigenous Reference Groups in transplantation units across Australia to co‐design culturally safe models of care and feedback mechanisms

Increase the number of Aboriginal and Torres Strait Islander patients, families and health professionals on kidney health advisory boards and steering groups, especially in transplantation units

 

 

Workforce

Increase and support Aboriginal and Torres Strait Islander people to work as clinicians, transplant coordinators, and case managers in kidney health

Employ Aboriginal and Torres Strait Islander people with lived experience of kidney disease in patient navigator and peer‐support roles, and ensure these are funded long term

Deliver cultural safety training for all staff in transplantation and kidney health services

 

Service delivery and models of care

Co‐design new, holistic, culturally safe, and responsive models of kidney care and transplantation that actively involve patients and families in decision making; address inequalities and access issues; respect cultural priorities and obligations; and include traditional healers and a wider range of health professionals, healing, and support services

Increase the use of telemedicine and videoconferencing, with Aboriginal health professional and interpreter support

Improve access to, support of, and payment for interpreters

 

Involve Aboriginal and Torres Strait Islander people in co‐developing new health promotion and health education resources and approaches to kidney transplantation

 

Structures and policies

Review and update quality improvement and feedback processes, policies, protocols, and guidelines in transplant units and kidney health services

 

 

Use an institutional racism audit tool to assess levels of racism in transplantation units and kidney health services

 

 

Develop and implement new clinical guidelines for Aboriginal and Torres Strait Islander kidney care and transplantation, and evaluate how effective they are in increasing access to kidney transplantation

Adequately fund the implementation and evaluation of cultural bias recommendations

 

 

Fund the National Indigenous Kidney Transplantation Taskforce to assess how each transplant unit scores in relation to cultural bias, and monitor improvements over time if/when recommendations are implemented

 

 


 

Box 3 – Sample questions for applying the Cultural Bias Report2 domains for action

Domain

Questions for service delivery


Inclusion of Aboriginal and Torres Strait Islander people

  • Is there evidence of Aboriginal and Torres Strait Islander people being included in the governance, decision making, feedback loops, and leadership of clinical practice and health service delivery when services work with Aboriginal and Torres Strait Islander people?
  • How are services confirming that these representatives are full and effective in their contribution to culturally safe delivery of health care?

Workforce

  • Are Aboriginal and Torres Strait Islander people represented throughout the health workforce?
  • What is the evidence of worker support to practice in a health care system free of racism?
  • How are they supported and resourced to provide adequate cultural safety for Aboriginal and Torres Strait Islander patients?

Service delivery and models of care

  • Which indicators demonstrate service delivery has been specifically created, or modified from existing practices, to ensure cultural safety for Aboriginal and Torres Strait Islander people who are at work or are recipients of care?
  • What is the selection and review process and how is the service enabling implementation of recommendations?
  • What are the timeframe, review, complaints and resolution processes that alert the service to successful implementation or persisting issues?

Structures and policies

  • Which structures, policies and processes are in place to ensure that auditing, accountability and responsibility are applied to providing culturally safe kidney care for Aboriginal and Torres Strait Islander people?

 


Provenance: Commissioned; externally peer reviewed.

  • Jaquelyne T Hughes1,2,*
  • Kelli J Owen3,4,
  • Janet Kelly5
  • Katie Cundale3,5
  • Sandawana William Majoni2,6
  • Matilda D'Antoine3,
  • Stephen P McDonald5,7

  • 1 Rural and Remote Health, Flinders University, Darwin, NT
  • 2 Royal Darwin Hospital, Darwin, NT
  • 3 National Indigenous Kidney Transplantation Taskforce, South Australian Health and Medical Research Institute, Adelaide, SA
  • 4 Central and Northern Adelaide Renal and Transplantation Service, Royal Adelaide Hospital, Adelaide, SA
  • 5 Adelaide Medical School, University of Adelaide, Adelaide, SA
  • 6 Menzies School of Health Research, Darwin, NT
  • 7 Australia and New Zealand Dialysis and Transplant Registry, South Australian Health and Medical Research Institute, Adelaide, SA

  • * Wagadagam tribe, Mabuyag Island
  • Kaurna, Narungga, and Ngarrindjeri
  • Paakantyi


Open access:

Open access publishing facilitated by The University of Adelaide, as part of the Wiley – The University of Adelaide agreement via the Council of Australian University Librarians.


Acknowledgements: 

We acknowledge and thank the Aboriginal and Torres Strait Islander people living with kidney disease and transplantation who shared their invaluable thoughts and contributions to this work. We would also like to acknowledge the combined work and dedication of the cultural bias working group members, as well as all members of the National Indigenous Kidney Transplantation Taskforce (NIKTT). We acknowledge and thank the Australian Government, represented by the Department of Health and Aged Care, for their funding of the NIKTT through an Indigenous Australians' Health Programme grant. This funding supported the salaries of three of the authors (Katie Cundale, Matilda D'Antoine and Kelli Owen) and covered the publication fees of the MJA supplement that includes this article. Jacqui Hughes was supported by National Health and Medical Research Council Fellowship 1174758.

Competing interests:

No relevant disclosures.

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