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

Abstract

ObjectivePatients 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.Setting18 studies (n=593 participants) conducted across eight countries (Australia, Canada, the UK, New Zealand, Ghana, the USA, Tanzania and India).ResultsWe 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).ConclusionPatients 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.

Patients’ Perspectives on Access to Dialysis and Kidney Transplantation in Rural Communities in Australia

“…The interviews were conducted face-to-face, over the phone or via Zoom videoconference. The interview guide (Appendix Table 1) was based on a literature review of patient and caregivers perspectives on access to kidney replacement therapy in rural communities and discussion among the research team 29 . Access was defined and discussed in terms of the opportunity to obtain appropriate healthcare services and receive relevant information pertaining to their health issue 30 .…”

Kidney transplant recipient perspectives on telehealth during the COVID‐19 pandemic

“…Patients are generally referred to a specialist or specialist team in an outpatient clinic for regular follow‐up after transplantation. These follow‐ups occur more regularly early on after transplantation and lessen the more stable a patient is and the more time that has passed since transplantation [ 6 ].…”

“…Telehealth is the use of telecommunication, usually by telephone or video call, to provide a clinical consultation [ 3 ]. Prior to COVID‐19, telehealth had been available mostly for patients who did not require interventions at the time of consultation or those who live in rural and remote communities who, in addition to limited access to specialist care, face other significant challenges that affect the mental and physical well‐being of patients [ 4 , 5 , 6 ]. Telehealth has been shown to be a cost‐effective, viable, and a convenient option for kidney transplant recipients and may be associated with increased health literacy [ 7 , 8 , 9 ].…”

Kidney Replacement Treatment in South-Western Italy (Campania): Population-Based Study on Gender and Residence Inequalities in Health Care Access

“…These methods have been applied also to Italian regional administrative databases [ 10 , 11 ]. The present study analysed administrative databases of the Campania region, southern Italy, to investigate the epidemiology of KRT and, in particular, the possibility that gender and residence could be determinants of health care inequality in the field of kidney diseases [ 12 , 13 , 14 , 15 , 16 ].…”