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American Journal of Kidney Diseases

Australian Rural Caregivers’ Experiences in Supporting Patients With Kidney Failure to Access Dialysis and Kidney Transplantation: A Qualitative Study

      Rationale & Objective

      Caregivers of patients with chronic kidney disease from rural communities play a crucial role in access to dialysis and transplantation, but they face many challenges including geographical distance, financial hardship, and limited support. This study aimed to inform strategies to overcome these challenges by describing the experiences of caregivers of patients with kidney failure from rural Australian communities in accessing kidney replacement therapy.

      Study Design

      Qualitative study.

      Setting & Participants

      18 adult caregivers of Australian rural patients with kidney failure treated with dialysis or kidney transplantation.

      Analytical Approach

      Semistructured interviews were conducted. Interview transcripts were thematically analyzed.

      Results

      The 18 participants were aged 20 to 78 years; 13 (72%) were female, and 13 (72%) were the spouse/partner of the patient. We identified 5 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).

      Limitations

      The study was conducted in a high-income, English-speaking country with universal health insurance, which may limit the transferability of the findings.

      Conclusions

      Australian rural caregivers of people with kidney failure treated by maintenance dialysis or transplantation experience an exhausting physical, financial, and psychological burden. Strategies to address these profound challenges are needed.

      Plain-Language Summary

      This interview-based study elicited the challenges faced by people and family members who care for patients from rural towns who are receiving dialysis or kidney transplantation. The barriers and difficulties reported included traveling long distances, needing to move to larger towns and leaving their homes, feeling concerned for the long-term effects on their children, physical exhaustion, and financial issues. Additional efforts are needed to identify the means by which caregivers and their families in rural towns can obtain support to care for those with kidney failure.

      Graphical abstract

      Index Words

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