Healthcare at the margins: An ethnography of chronic kidney disease and peritoneal dialysis in Mexico

Abstract

The aim of this thesis is to document and analyse the practices and experiences of poor and uninsured patients and their families living with Chronic Kidney Disease (CKD) and using Continuous Ambulatory Peritoneal Dialysis (CAPD) in Mexico, tracing them throughout multiple contexts in the process. This study draws on a critical and interpretive social science methodology, one that takes into account the social, political, cultural, and experiential dimensions of a condition and treatment that are often regarded as exclusive to the biomedical domain. I carried out ethnographic fieldwork in Jalisco, Mexico, from September 2012 to May 2013, during which I conducted in-depth interviews with patients, family members, healthcare professionals, and charitable organisations’ staff, and undertook ethnographic observations in domestic, hospital, and community settings. The ethnographic perspective adopted in this study allowed me to provide a richer account of the unequal, hierarchical, and historically rooted social relationships that underpin interactions between patients and the health professionals who represent and control access to the health system. Focusing on the socio-material conditions within which the problem is situated, the study starts off by following the trajectories of uninsured patients from their diagnosis to treatment, and the work that they are required to undertake throughout. At a public hospital for the uninsured, patients have a catheter inserted in their abdomens and they are put on peritoneal dialysis, the mainstay therapy for CKD patients in Mexico. They have to go through an admission process, which takes the form of a rite of passage, in which they are drilled in new body techniques, a part of their homes is turned into a para-clinical space, and they are transformed into productive CAPD patients to whom peritoneal dialysis can be outsourced in the home. Ultimately, this process aims to create a nexus between the body, the therapy, and the clinic. Patients and families do, however, modify, accommodate and thus domesticate CAPD by the constant practice of the therapy, although complications of the disease and therapy occur all throughout their trajectories, sometimes with fatal consequences. In the absence of proper public healthcare coverage for CKD and CAPD, a biosocial community has emerged around CKD and its therapies, characterised by exchange practices among its members, operating according to various quid pro quo logics, which I call the informal economy of renal replacement therapies. However, renal biosociality and the informal economy that arises from it cannot provide all the support uninsured patients need. I conclude that, while considered a global health concern, to fully understand the social and political implications of CKD and its therapies we need to adopt an ethnographic perspective that traces the practices of patients and families through different sites of care – the hospital, the home and the community. I argue that CAPD is a therapy situated at the margins of social welfare, which makes patients and their families directly responsible for its success and failures, a process which imposes substantial long-term financial and social costs on those already in desperate need. Although collective responses have emerged through the local biosocial community and its informal economy, those responses, I argue, are just another consequence of the problematic social context within which CKD and CAPD are embedded.