N Scholes-Robertson1, M Howell1, T Gutman1, J Craig2, A Tong1
1The University of Sydney, Camperdown, Australia, 2Flinders University , Adelaide, Australia
Aim: We aimed to describe the experiences of patients accessing dialysis and kidney transplantation in rural communities in Australia.
Background: People with chronic kidney disease (CKD) in rural communities have an increased risk of mortality, hospitalisation and morbidity than those in urban areas and encounter many obstacles to accessing kidney replacement therapy.
Methods: Semi-structured interviews were conducted between February 2020 – October 2020 with people with CKD (Stage V) from rural communities. Transcripts were thematically analysed. We defined rural to include all areas outside of major cities and used the Modified Monash Model (MMM) to define whether a location is a city, rural, remote or very remote. Data saturation was achieved.
Results: The study included 28 participants (female 50%, 17% identified as Aboriginal/Torres Strait Islander, ages ranging 20-74 years). We identified five themes: encumbered by transportation hardship (burdening of family and friends, frustration at lack of transportation options, heightened vulnerability to road trauma, unrelenting financial strain), deprived of treatment and care (isolated from centralised services, unresolved psychological distress, vulnerable without care, disadvantaged by limited options), confused by multiple information sources (despair at fragmented care, fear of unfamiliar health settings and treatments), compounding economic consequences (depletion of income/leave, coping with unexpected expenses), and the looming threat of relocation (devastated by displacement, resigned to periods of separation, uncertainty sourcing appropriate accommodation).
Conclusion: Patients with CKD in rural communities face economic, logistical, and psychological obstacles to accessing dialysis and transplant, leaving them feeling vulnerable and confused. Improved models of health service delivery are needed to improve equity of access for patients in rural communities requiring kidney replacement therapy.
Nicki is a patient partner, physiotherapist, and a PhD candidate at the Sydney School of Public Health, The University of Sydney. In 2014, Nicki commenced peritoneal dialysis and was fortunate to receive a living donor kidney transplant from her brother in November that year. Her research focus is on access to dialysis and transplantation services for rural patients in Australia and for this she was awarded an NHMRC postgraduate scholarship. Nicki is the Consumer Editor of Cochrane Kidney and Transplant, and works on many projects with AKTN and CARI guidelines.