Fluid illness

Abstract

In response to the rising rate of end-stage renal disease (ESRD) in Guatemala, the public health system established a national community-based dialysis program to enable people living in rural areas to complete treatment in their homes. Here we explore how this newly available, life-prolonging technology has altered local worlds by transforming ESRD from an acute, life-ending illness into a managed chronic condition with an uncertain trajectory. Through case studies, we describe how living with dialysis influences family relations and caregiving in rural Guatemala. We find that dialysis interacts with an insufficient health care system, one that avoids life-ending complications but does not sufficiently manage lifealtering symptoms. In addition, the need to care for people with ESRD for an uncertain amount of time may disrupt and strain family-based caregiving networks. Amid this meager health and social welfare infrastructure, life on dialysis exacerbates the chronic insecurity and structural inequality of life in postwar Guatemala. As both life and illness are prolonged through dialysis, the unceasing demands of the treatment and illness strain the webs of obligation and care that Guatemalan families and communities have developed to adapt to their decentralized and fragmented public health care system.

Challenges in the provision of kidney care at the largest public nephrology center in Guatemala: a qualitative study with health professionals

“…However, our goal was to understand the challenges of providing kidney care to a large number of uninsured adults in Guatemala, and UNAERC is the dominant institution providing such care. Third, while this study did not include patient perspectives, it complements the authors' prior work studying CKD in Guatemala from the perspective of both children and adults [10,25,26,67,68].…”