The neglected burden of caregiving in low- and middle-income countries

Background: The number of persons with disability worldwide is estimated at more than one billion, and low- and middle-income countries (LMIC's) have particularly high prevalence. The consequences of disability have garnered growing attention, but the burden of caregiving for persons with disease or disability remains largely unquantified especially in LMIC's. Objective: The goal of this paper is to report the results of a review of literature on caregiving in LMIC's, describing the characteristics of caregivers and of persons with disease or disability for whom care is provided, and the burden of caregiving in several domains. Methods: We reviewed electronically available literature up to March 2012. Data were extracted pertaining to the following categories: caregiver demographics, caregiving activities, psychological burden, social burden, financial burden, physical burden, and time burden. Results: Our review demonstrates that there is considerable and neglected burden on caregivers in LMIC's in physical, psychological, social, time, and financial realms. Existing literature is limited by the small volume of published research available on this topic, diverse methodologies, and lack of consensus on how to define and measure caregiver burden. However the evidence is clear that there are adverse consequences that arise as a result of the role of caregiver in this setting. Conclusions: In light of the mounting evidence of the significant burden placed on caregivers of persons with disease and disability, it is imperative that the opportunity be taken to ensure that evidence informs best practice and policy in order to provide the support and services necessary to make an impact. (C) 2014 Elsevier Inc. All rights reserved.