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

• DOI: 10.1371/journal.pone.0225722
• Publication Date: 2019-12-19T13:32:13Z
• Authors: Jaquelyne T. Hughes; Natasha Freeman; Barbara Beaton; Anne-Marie Purunt...; Monica Hausin; Gerarda Tipiloura; Pamela Wood; Selina Signal; Sandawana W. Majoni; Alan Cass; Louise J. Maple-B...; Renae Kirkham
• Keywords: Adult; Aged, 80 and over; Male; Health Knowledge, Attitudes, Practice; Science; Health Personnel; Q; R; Health Services; Middle Aged; Kidney Transplantation; 3. Good health; 03 medical and health sciences; Renal Dialysis; Northern Territory; Medicine; Humans; Female; Renal Insufficiency, Chronic; 0305 other medical science; Delivery of Health Care; Qualitative Research; Research Article; Aged

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