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Please note that you are viewing an archived section from 2019 and some content may be unavailable. To unlock all content for 2019, please visit the archives.

Abstract: TH-PO273

Patient and Caregiver Experiences and Perspectives on Access to Kidney Replacement Therapy in Rural and Remote Communities: Thematic Synthesis of Qualitative Studies

Session Information

Category: Dialysis

  • 701 Dialysis: Hemodialysis and Frequent Dialysis

Authors

  • Scholes-Robertson, Nicole Jane, The University of Sydney, Armidale, New South Wales, Australia
  • Howell, Martin, University of Sydney, School of Public Health, Sydney, New South Wales, Australia
  • Gutman, Talia M., University of Sydney, School of Public Health, Sydney, New South Wales, Australia
  • Craig, Jonathan C., Flinders University, Adelaide, South Australia, Australia
  • Tong, Allison, The University of Sydney, Armidale, New South Wales, Australia
Background

Patients with chronic kidney disease requiring kidney replacement therapy in rural and remote communities are at higher risk of mortality when compared with those in urban areas, and encounter many barriers in accessing care. We aimed to describe patient/caregiver perspectives on access to dialysis and kidney transplantation in rural/remote communities. Access is defined as the opportunity to reach and obtain appropriate health care services and includes the right to seek information concerning health issues.

Methods

Medline, Embase, PsycINFO and CINAHL were searched to February 2019. Studies that where qualitative in nature, provided perspectives of patient and/or caregivers who resided in rural/remote communities, patients over 18 years of age and required Kidney replacement therapy were included. Thematic synthesis was used to analyze the findings.

Results

From 18 studies (n= 540 participants) conducted across 8 countries (Australia, Canada, United Kingdom, New Zealand, Ghana, United States, Tanzania, and India), we identified six themes: uncertainty in navigating healthcare services (inadequacy of absorbing information, without familiarity and exposure to options, lacking trust in clinicians and yearning for cultural safety at a local level); fearing separation from family and country (devastating homesickness, unable to fulfil family roles, preserving sense of belonging in community and grieving former roles); intense burden of travel and cost (poverty of time, exposure to risks and hazards, taking a financial toll and tedious pre-transplant testing processes and workup expenses); suffering hardship and loss (making life changing sacrifices, relocation with no return and inadequacy of transitional accommodation); grief, guilt and worry in receiving care (shame in resource usage and harboring concerns for living donor) and; coping and managing in isolation (hesitation about capacity to do home dialysis).

Conclusion

Patients with CKD in rural/remote areas face profound challenges of displacement, financial burden, separation from family in accessing kidney replacement therapy; which can have severe consequences on wellbeing and outcomes. Strategies are needed to improve access for those patients in rural/remote communities.