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

Nicole Scholes-Robertson, Talia Gutman, Amanda Dominello, Martin Howell, Jonathan C. Craig, Germaine Wong, Allison Jaure

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish
Pages (from-to)773-782.e1
Number of pages11
JournalAmerican Journal of Kidney Diseases
Volume80
Issue number6
DOIs
Publication statusPublished - Dec 2022

Keywords

  • Access
  • caregiver
  • chronic kidney disease (CKD)
  • dialysis
  • end-stage renal disease (ESRD)
  • geographic barriers
  • health care disparities
  • qualitative research
  • renal replacement therapy (RRT)
  • rural
  • rural-urban divide
  • transplantation

Fingerprint

Dive into the research topics of 'Australian Rural Caregivers’ Experiences in Supporting Patients With Kidney Failure to Access Dialysis and Kidney Transplantation: A Qualitative Study'. Together they form a unique fingerprint.

Cite this