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

Abstract

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