My experiences with kidney care: A qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation

Abstract

BackgroundAustralian healthcare quality and safety accreditation standards recommend health services partner with health care users, to ensure the highest quality of care. Aboriginal Australians with chronic and end stage kidney disease have high health care access needs.AimTo describe the experiences of health care users of a large government kidney healthcare service provider.MethodsWithin a government renal health service in the Top-End of the Northern Territory, we undertook a qualitative study involving in-depth interviews with 26 adult clients from urban, regional and remote settings who were living with kidney health conditions.ResultsClient characteristics included a mean age of 55 years, 55% female and 81% identifying as Aboriginal. The kidney related conditions of client participants included CKD (11, 42.3%), haemodialysis (12, 46.2%), peritoneal dialysis (1, 3.9%), and transplant (2, 7.7%). Key themes emerging from patient interviews related to perceived gaps for clients and carers including: 1) knowledge gaps about the health condition, 2) the impact of relocation in order to access centrally-based renal care, 3) healthcare staff professionalism and qualities and 4) service environments. Overall, the experiences centred on a greater need for client-centred, respectful and culturally based healthcare support. Clients recommended the need for patient-led collective care, including sustaining an Indigenous Patient Reference Group to support ongoing healthcare service decision processes. Participants included in almost equal proportion, clients with CKD (without dialysis) and clients utilising renal replacement therapy, which adds significant weight to the client-identified recommendations for highest quality of kidney care across a wide spectrum of kidney function.ConclusionFour major themes identified by clients related to their experience with renal care provided by this major regional health care provider: knowledge gaps of their own condition, the lived impacts of relocating to access health care, service environments, and Health Care Provider Quality. An Indigenous Patient Reference Group was one mechanism recommended to support the co-design of preferred care models.

Review of current pathways to wait-listing for kidney transplantation for Aboriginal and Torres Strait Islander peoples with end-stage kidney disease in the Top End of Northern Australia

“…A patient reference group for TERS has been set up. 13 Performing investigations closer to patients' communities and increasing the use of telehealth will improve access to specialists. The recent appointment of a psychologist within the renal services has closed a significant gap in the service.…”

Lessons learned from a periodontal intervention to reduce progression of chronic kidney disease among Aboriginal Australians

“…An Indigenous study reference group was established prior to commencement of recruitment, to guide processes and to act as champions for the study in the community. The retention strategies utilised involved: (1) employing Aboriginal people in roles to undertake contact tracing to enhance participant follow-up at scheduled study visits; (2) ensuring participants were contacted on a regular basis to check accuracy of contact details; (3) maintaining relationships with appropriate stake holders whose role was to promote the study; (4) ascertaining contact details of three key personnel who may know the whereabouts of participants should the study team be unable to contact them; (5) sending birthday and Christmas cards to participants and; (6) supporting continuity of care in the research conduct between staff and participants where desired (by participants), with study staff ideally seeing each of their participants for each phase of the research [12].…”

Furthering Cultural Safety in Kidney Care Within Indigenous Communities: A Systematic and Narrative Review

“…Four themes emerged from the interviews revolving around time, culturally specific care, health care team relationships, and issues within nursing practice. As apparent in the publications by Richels et al 16 and Hughes et al, 17 the need for interpreters and culturally appropriate and Indigenous specific resources was pinpointed. Further, there were recommendations for "having cultural input into changes in health service systems; nurses having better access to and engagement with culturally appropriate social workers and cultural support personnel; and the promotion of kidney nursing to Ma ōri and Pacific students."…”

“…The need for individualized education and support for caregivers was further highlighted. 16 Similarly, a qualitative study by Hughes et al 17 and a scoping review from Jansen et al 18 emphasized community relational strengths and included supporting, assisting each other, and learning from and listening to Elders. These studies and another study by Nelson et al 19 also identified a need for resources beyond written format that are inclusive of local language, traditional protocols, and ceremonies developed by communities themselves.…”

“…Walker et al 20 completed a systematic review of qualitative studies related to Indigenous experiences, perspectives, and values regarding kidney transplantation with participants from Australia, New Zealand, Canada, and the United States. A recurring theme which is shared with the articles by Richels et al, 16 Hughes et al, 17 and Jansen et al 18 was the lack of patient engagement in kidney healthcare decision-making, including prioritizing transplantation. Moreover, the review highlights issues with trust within the health care system and the need to incorporate traditional ways in order to foster kidney organ donation and transplantation.…”