Abstract: FR-PO871
Rural Caregivers' Perspectives on Access to Dialysis and Kidney Transplantation
Session Information
- Diversity and Equity in Kidney Health - II
November 04, 2022 | Location: Exhibit Hall, Orange County Convention Center‚ West Building
Abstract Time: 10:00 AM - 12:00 PM
Category: Diversity and Equity in Kidney Health
- 800 Diversity and Equity in Kidney Health
Authors
- Scholes-Robertson, Nicole Jane, The University of Sydney Faculty of Medicine and Health, Sydney, New South Wales, Australia
- Dominello, Amanda G., The University of Sydney Faculty of Medicine and Health, Sydney, New South Wales, Australia
- Howell, Martin, The University of Sydney Faculty of Medicine and Health, Sydney, New South Wales, Australia
- Craig, Jonathan C., Flinders University, Adelaide, South Australia, Australia
- Wong, Germaine, The University of Sydney Faculty of Medicine and Health, Sydney, New South Wales, Australia
- Tong, Allison, The University of Sydney Faculty of Medicine and Health, Sydney, New South Wales, Australia
Background
Caregivers of patients with chronic kidney disease (CKD) from rural communities play a crucial role in access to dialysis and transplantation and face many challenges including geographical distance, financial hardship, and limited support. This study aimed to describe the perspectives of caregivers of patients with CKD from rural communities on their experiences of accessing kidney replacement therapy to help inform strategies to address their needs.
Methods
Semi-structured interviews were conducted. Transcripts were thematically analysed. We followed the consolidated criteria for reporting qualitative research (COREQ) framework.
Results
We included 18 participants aged from 20 to 78 years of age; 13 (72%) were female; 2 identified as Aboriginal or Torres Strait Islander, and 13 (72%) were the spouse/partner of the patient. We identified five themes: devastating social isolation (difficult periods of separation, exclusion from peers, forced relocation); financial dependency and sacrifice (burgeoning out-of-pocket costs, disruption to work life, foregoing autonomy); ongoing psychological trauma (concern for neglect and stress on children, long term emotional distress); overwhelmed by multifaceted roles and expectations (patient advocacy, uncertainty in navigating multiple health systems); and persistent burden of responsibility (loss of self-identity, ongoing travel requirements, scarcity of psychosocial support, unpreparedness for treatment regime).
Conclusion
Rural caregivers of people with CKD experience an exhausting physical, financial, and psychological burden. Strategies and improved formal respite services are required to address these profound challenges in the rural setting for caregivers of patients with CKD.
Figure 1 Thematic Schema