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
Menzies School of Health Research
13 participants
Aug 1, 2020
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
Inclusion Criteria6
- Renal health services coordinating care for at least five Aboriginal and/or Torres Strait Islander patients starting renal replacement therapy every year. Since this is health services research, both service staff and patients will be involved, but the primary unit of recruitment and interest is the health service not individual patients.
- For part 1: within 12 months of starting RRT, language experts and cultural advisors, patients who identify as Aboriginal and/or Torres Strait Islander.
- For part 2 & 3: patients' receiving treatment at one of the participating renal health services
- Medical staff, including medical doctors, Registered nurses, allied health staff employed at the participating renal health services
- Any non-medical staff employed at the participating renal health services (such as personal care assistants, receptionist, ward clerk, transport officers)
- Key renal unit staff, including the head of unit, nursing director, Aboriginal Health Practitioner or Worker, Aboriginal Liaison Officer, transplant coordinator, allied health professionals.
Exclusion Criteria9
- For renal health service:
- Does not comply with the Service Site Agreement; or
- Requesting removal from the study
- For renal patients and staff:
- Requestion removal from the study
- Children under 18 years
- Cognitively impaired
- Being in acute pain or severe mental distress
- Unable to provide informed consent
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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 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)
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ACTRN12623001241628