The survival benefit of deceased donor kidney transplantation for Aboriginal and Torres Strait Islander people, 2006-20: a retrospective national cohort study.

OBJECTIVES: To quantify the survival benefit of kidney transplantation for Aboriginal and Torres Strait Islander people waitlisted for deceased donor kidney transplantation in Australia. STUDY DESIGN: Retrospective cohort study; analysis of linked data from the Australia and New Zealand Dialysis and Transplant (ANZDATA) registry, the Australia and New Zealand Organ Donation (ANZOD) registry, and OrganMatch (Australian Red Cross). SETTING, PARTICIPANTS: All adult Aboriginal and Torres Strait Islander people (18 years or older) who commenced dialysis in Australia during 1 July 2006 - 31 December 2020 and were included in the kidney-only deceased donor transplant waiting list. MAIN OUTCOME MEASURES: Survival benefit of deceased donor kidney transplantation relative to remaining on dialysis. RESULTS: Of the 4082 Aboriginal and Torres Strait Islander people who commenced dialysis, 450 were waitlisted for kidney transplants (11%), of whom 323 received deceased donor transplants. Transplantation was associated with a significant survival benefit compared with remaining on dialysis after the first 12 months (adjusted hazard ratio [HR], 0.38; 95% confidence interval [CI], 0.20-0.73). This benefit was similar to that for waitlisted non-Indigenous people who received deceased donor kidney transplants (adjusted HR, 0.47; 95% CI, 0.40-0.57; Indigenous status interaction: P = 0.22). CONCLUSIONS: From twelve months post-transplantation, deceased donor transplantation provides a survival benefit for Aboriginal and Torres Strait Islander people. Our findings provide evidence that supports efforts to promote the waitlisting of Aboriginal and Torres Strait Islander people who are otherwise eligible for transplantation.

Recommendations for culturally safe clinical kidney care for First Nations Australians: a guideline summary.

INTRODUCTION: First Nations Australians display remarkable strength and resilience despite the intergenerational impacts of ongoing colonisation. The continuing disadvantage is evident in the higher incidence, prevalence, morbidity and mortality of chronic kidney disease (CKD) among First Nations Australians. Nationwide community consultation (Kidney Health Australia, Yarning Kidneys, and Lowitja Institute, Catching Some Air) identified priority issues for guideline development. These guidelines uniquely prioritised the knowledge of the community, alongside relevant evidence using an adapted GRADE Evidence to Decision framework to develop specific recommendations for the management of CKD among First Nations Australians. MAIN RECOMMENDATIONS: These guidelines explicitly state that health systems have to measure, monitor and evaluate institutional racism and link it to cultural safety training, as well as increase community and family involvement in clinical care and equitable transport and accommodation. The guidelines recommend earlier CKD screening criteria (age ≥ 18 years) and referral to specialists services with earlier criteria of kidney function (eg, estimated glomerular filtration rate [eGFR], ≤ 45 mL/min/1.73 m2 , and a sustained decrease in eGFR, > 10 mL/min/1.73 m2 per year) compared with the general population. CHANGES IN MANAGEMENT AS RESULT OF THE GUIDELINES: Our recommendations prioritise health care service delivery changes to address institutional racism and ensure meaningful cultural safety training. Earlier detection of CKD and referral to nephrologists for First Nations Australians has been recommended to ensure timely implementation to preserve kidney function given the excess burden of disease. Finally, the importance of community with the recognition of involvement in all aspects and stages of treatment together with increased access to care on Country, particularly in rural and remote locations, including dialysis services.

Perspectives of a proposed patient navigator programme for people with chronic kidney disease in rural communities: Report from national workshops.

AIMS: People who live in rural areas have reduced access to appropriate and timely healthcare, leading to poorer health outcomes than their metropolitan-based counterparts. The aims of the workshops were to ascertain participants' perspectives on barriers to access to dialysis and transplantation, to identify and prioritize the roles of a rural patient navigator, to discuss the acceptability and feasibility of implementing this role and identify possible outcomes that could be used to measure the success of the programme in a clinical trial. METHODS: Rural patients (n = 19), their caregivers (n = 5) and health professionals (n = 18) from Australia participated in three workshops. We analysed the data using thematic analysis. RESULTS: We identified four themes related to access to dialysis and transplantation: overwhelmed by separate and disconnected health systems, unprepared for emotional toll and isolation, lack of practical support and inability to develop trust and rapport. Four themes related to the role of the patient navigator programme: valuing lived experience, offering cultural expertise, requiring a conduit, and flexibility of the job description. The key roles prioritized by participants were psychological support and networking, provision/consolidation of education, and provision of practical support. CONCLUSION: Rural patients, caregivers and health professionals believed that programmes that include navigators with lived experience of dialysis and kidney transplantation and cultural expertise, especially for Aboriginal Australians, may have the potential to improve patient experiences in accessing healthcare.

Co-designing a Health Journey Mapping resource for culturally safe health care with and for First Nations people.

Background Many healthcare professionals and services strive to improve cultural safety of care for Australia's First Nations people. However, they work within established systems and structures that do not reliably meet diverse health care needs nor reflect culturally safe paradigms. Journey mapping approaches can improve understanding of patient/client healthcare priorities and care delivery challenges from healthcare professionals' perspectives leading to improved responses that address discriminatory practices and institutional racism. This project aimed to review accessibility and usability of the existing Managing Two Worlds Together (MTWT) patient journey mapping tools and resources, and develop new Health Journey Mapping (HJM) tools and resources. Method Four repeated cycles of collaborative participatory action research were undertaken using repeated cycles of look and listen, think and discuss, take action together. A literature search and survey were conducted to review accessibility and usability of MTWT tools and resources. First Nations patients and families, and First Nations and non-First Nations researchers, hospital and university educators and healthcare professionals (end users), reviewed and tested HJM prototypes, shaping design, format and focus. Results The MTWT tool and resources have been used across multiple health care, research and education settings. However, many users experienced initial difficulty engaging with the tool and offered suggested improvements in design and usability. End user feedback on HJM prototypes identified the need for three distinct mapping tools for three different purposes: clinical care, detailed care planning and strategic mapping, to be accompanied by comprehensive resource materials, instructional guides, videos and case study examples. These were linked to continuous quality improvement and accreditation standards to enhance uptake in healthcare settings. Conclusion The new HJM tools and resources effectively map diverse journeys and assist recognition and application of strengths-based, holistic and culturally safe approaches to health care.

Real Ways of Working Together: co-creating meaningful Aboriginal community consultations to advance kidney care.

OBJECTIVE: To describe a process of meaningful Aboriginal community engagement that repositioned and valued community members' knowledge(s) and lived experiences while strengthening relationships, research processes and outcomes. BACKGROUND: Aboriginal Australians have the oldest continuous culture in the world, yet due to effects of colonisation, experience some of the world's poorest health outcomes. The AKction [Aboriginal Kidney Care Together - Improving Outcomes Now] project brought together Aboriginal people with lived experience of kidney disease, clinicians and researchers to improve kidney care. METHODOLOGY: Using Aboriginal methodologies of Ganma and Dadirri within community-based participatory action research (cb-PAR), a core advisory group of Aboriginal people with lived experiences of kidney disease worked closely with clinicians and researchers. RESULTS: Three community consultation workshops that deeply valued Aboriginal knowledge(s) were co-created. Community members formed a reference group, established partnerships and influenced health research, policy and service provision. Non-Indigenous researchers engaged in critical self-reflection and levelling of Western-Aboriginal and clinician-consumer power imbalances. CONCLUSIONS: Deeply respectful community engagement is possible through co-creation and cb-PAR. It results in multiple positive impacts and beneficial relationships between community members, clinicians and academics. IMPLICATIONS FOR PUBLIC HEALTH: Meaningful consultation with Aboriginal communities guides culturally safe research processes, health policy and service delivery.