N SCHOLES-ROBERTSON1, T GUTMAN1, M HOWELL1, J CRAIG2, A TONG1
1The University Of Sydney, 2Flinders University
Aim: We aimed to describe caregivers’ perspectives of patient access to dialysis and kidney transplantation in rural communities.
Background: Caregivers play a vital role in assisting patients with chronic kidney disease (CKD) to access dialysis and transplantation, particularly in rural communities where there are substantial gaps in health service delivery. The dependence on caregivers highlights the need to develop strategies to support rural caregivers, and thereby improve patient access to kidney replacement therapy.
Methods: We conducted semi-structured interviews with caregivers of patients who require kidney replacement therapy from rural communities in Australia. Transcripts were thematically analysed.
Results: We identified four major themes: devastating social isolation: difficult periods of separation, exclusion from peers; persistent burden of responsibilities, loss of self-identity, ongoing travel demands, scarcity of outreach support services; financial dependency and sacrifice: disruption to work life, foregoing autonomy, burgeoning out of pocket expenses; overwhelmed by multifaceted roles and expectations; assuming the advocacy role, uncertainty in navigating multiple health services, unpreparedness for demanding treatment schedule.
Conclusions: Caregivers in rural communities face profound challenges of separation from family and community, financial sacrifice, and limited availability of respite options; which can have severe consequences on their personal well being and the outcomes of those they care for. Strategies are needed to improve support and reduce the burden of accessing kidney replacement therapy in rural communities on both caregivers and patients.
Nicole is a patient partner, physiotherapist, and a PhD candidate at the University of Sydney. In 2014, Nicki commenced peritoneal dialysis and received 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 was awarded an NHMRC postgraduate Scholarship. Nicki is a Steering Group member of the Standardised Outcomes in Nephrology (SONG-GN) and AKTN. Nicki is a member of the ANZSN and a consumer representative on the Transplant working group and Green Nephrology Action Team (GNAT).