RecruitingACTRN12623001241628

Return to Country: A national platform study to return Aboriginal and Torres Strait Islander renal patients home

Return to Country: Effect of increasing health service awareness of cultural safety on perceptions of care and time to return home in Aboriginal and/or Torres Strait Islander dialysis and/or kidney transplant patients


Sponsor

Menzies School of Health Research

Enrollment

13 participants

Start Date

Aug 1, 2020

Study Type

Observational

Conditions

Summary

End-stage kidney disease (ESKD), when dialysis or a kidney transplant is required to maintain life, has a devastating impact on Indigenous patients and their families. In remote communities, rates of ESKD are 15 or more times higher than amongst non-Indigenous Australians of the same age and sex, and people need to relocate to distant urban centres to take up dialysis. Community-based dialysis or a kidney transplant allows a patient to return to live in their community. However, Indigenous Australians have very low rates of such community-based treatment. This multicentre prospective interventional study will investigate why this is, and test if interventions to address these identified barriers can get more people home for treatment.


Eligibility

Sex: Both males and femalesMin Age: 18 Yearss

Plain Language Summary

Simplified for easier understanding

This study is working to help Aboriginal and Torres Strait Islander people with end-stage kidney disease get back to living in their own communities. When someone's kidneys fail completely, they need dialysis — a treatment that cleans their blood — usually three times a week. For people in remote communities, this means leaving home and relocating to a distant city, often for years. The separation from family, land, and culture is devastating, and studies show it contributes to poorer health outcomes. While community-based dialysis exists, very few Indigenous Australians are able to access it. This national study will investigate *why* that gap exists — what are the barriers in the health system, and what helps people get home? Researchers will work with kidney health services, patients, and staff across the country to understand the problem and then test practical interventions to address it. Participating services must care for at least five Indigenous patients starting kidney replacement therapy per year. Both health service staff and patients (Aboriginal and Torres Strait Islander people on dialysis) are involved in surveys, interviews, and focus groups. The study is ultimately about giving people the right to receive life-sustaining treatment close to home.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Interventions

Study Part 2 (observation) Clinician leaders, patient-facing staff and patients from tertiary renal services/units participating in this study will participate in the following activities at baseline

Study Part 2 (observation) Clinician leaders, patient-facing staff and patients from tertiary renal services/units participating in this study will participate in the following activities at baseline and after a minimum of two (and maximum of three) years: i) an organisational policies and procedures audit relevant to culturally safe practice for Aboriginal and/or Torres Strait Islander patients, adapted from National Safety and Quality of Health Care guidelines; ii) an on-line voluntary and anonymous staff survey designed to measure staff attitudes and beliefs toward Aboriginal and/or Torres Strait Islander patients, as well as self-reported communication styles and strategies staff use with patients. 20 minutes; iii) a report of relevant one year patient outcomes (death, treatment modality, return to postcode of original residence) for each centre using national renal (ANZDATA) registry data over the previous five years; iv) qualitative feedback from Aboriginal and/or Torres Strait Islander patient groups (ideally involving patients who are within one year of starting treatment) about their perceptions of treatment and care in five broad domains, as well as their responses to summaries of the information provided through activities (i), (ii) and (iii) above; and their willingness to be involved in a process of health service quality improvement - talking circles/focus group up to 10 renal patients in session, duration 2-3hr v) qualitative feedback from key staff informants at each centre about their responses to a report including data from activities (i), (ii), (iii) and (iv) above, including a qualitative assessment from them of the degree to which they feel their centre/service is providing adequate care, and their willingness to be involved in a process of health service quality improvement. Report presentation to renal executive, to renal staff through in-service and summary posters If the responses from patients (in activity (iv)) and key staff informants (in activity (v)) support engagement in health service quality improvement at the involved centre/service, a group (Study Part 3 - Change Phase: Community of Practice, CoP) including both will be convened and consent gained from the group for Return To Country researchers to observe the meetings and make suggestions for change when invited to do so. This will be the only "intervention" in the study (besides the provision of data from activities (i)-(v) above. Regardless of the involvement of the renal centre/service in the process of patient-staff health service quality improvement as part of the Return To Country Study, the initial activities (i)-(v) above will be repeated for each service after a minimum of two and maximum of three years since the initial activity. This will provide data about changes in processes, attitudes and outcomes of care.


Locations(12)

Royal Darwin Hospital - Tiwi

NSW,NT,QLD,SA,WA, Australia

Alice Springs Hospital - Alice Springs

NSW,NT,QLD,SA,WA, Australia

Cairns Base Hospital - Cairns

NSW,NT,QLD,SA,WA, Australia

The Townsville Hospital - Douglas

NSW,NT,QLD,SA,WA, Australia

John Hunter Hospital - New Lambton

NSW,NT,QLD,SA,WA, Australia

The Royal Adelaide Hospital - Adelaide

NSW,NT,QLD,SA,WA, Australia

Royal Perth Hospital - Perth

NSW,NT,QLD,SA,WA, Australia

Fiona Stanley Hospital - Murdoch

NSW,NT,QLD,SA,WA, Australia

Sir Charles Gairdner Hospital - Nedlands

NSW,NT,QLD,SA,WA, Australia

Westmead Hospital - Westmead

NSW,NT,QLD,SA,WA, Australia

Royal Prince Alfred Hospital - Camperdown

NSW,NT,QLD,SA,WA, Australia

Dubbo Base Hospital - Dubbo

NSW,NT,QLD,SA,WA, Australia

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