Patients' and caregivers' perspectives on access to kidney replacement therapy in rural communities: systematic review of qualitative studies

Nicole Jane Scholes-Robertson, Martin Howell, Talia Gutman, Amanda Baumgart, Victoria SInka, David J. Tunnicliffe, Stephen May, Rachel Chalmers, Jonathan Craig, Allison Tong

Research output: Contribution to journalArticlepeer-review

11 Citations (Scopus)
11 Downloads (Pure)

Abstract


OBJECTIVE: Patients with chronic kidney disease (CKD) requiring kidney replacement therapy (KRT) in rural communities encounter many barriers in accessing equitable care and have worse outcomes compared with patients in urban areas. This study aims to describe the perspectives of patients and caregivers on access to KRT in rural communities to inform strategies to maximise access to quality care, and thereby reduce disadvantage, inequity and improve health outcomes. SETTING: 18 studies (n=593 participants) conducted across eight countries (Australia, Canada, the UK, New Zealand, Ghana, the USA, Tanzania and India). RESULTS: We identified five themes: uncertainty in navigating healthcare services (with subthemes of struggling to absorb information, without familiarity and exposure to options, grieving former roles and yearning for cultural safety); fearing separation from family and home (anguish of homesickness, unable to fulfil family roles and preserving sense of belonging in community); intense burden of travel and cost (poverty of time, exposure to risks and hazards, and taking a financial toll); making life-changing sacrifices; guilt and worry in receiving care (shame in taking resources from others, harbouring concerns for living donor, and coping and managing in isolation). CONCLUSION: Patients with CKD in rural areas face profound and inequitable challenges of displacement, financial burden and separation from family in accessing KRT, which can have severe consequences on their well-being and outcomes. Strategies are needed to improve access and reduce the burden of obtaining appropriate KRT in rural communities.

Original languageEnglish
Article numbere037529
Number of pages11
JournalBMJ Open
Volume10
Issue number9
DOIs
Publication statusPublished - 23 Sep 2020

Bibliographical note

© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

Keywords

  • dialysis
  • qualitative research
  • renal transplantation
  • chronic kidney disease (CKD)
  • kidney replacement therapy (KRT)
  • rural communities

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