It's Your Responsibility: The Socioeconomic Implications of Home-Based Renal Care

Abstract

Medical research has demonstrated that End-Stage Renal Disease (ESRD) is one of the most cost-consuming and labour-intensive chronic diseases. The frequent and perpetual need for dialysis treatments has created a crisis in renal care that has challenged health care systems to meet the current and future needs of the population. The crisis response in Ontario, Canada has relied upon the principles of neoliberalism to implement a home-based model of care that shifts dialysis from the hospital to the home. This transfer of treatment involves a significant downloading of work and costs to the patient, but offers them better health outcomes and autonomy over their care. To understand the socioeconomic outcomes of home dialysis programs, this dissertation draws upon interviews with patients, care partners, and frontline health care professionals to explore: 1) how home dialysis programs implement neoliberal processes of responsibilization which result in patients and their families performing their own care; and 2) how patients and their families respond to this responsibility within the context of their household. Major findings reveal that patients and their families experience significant hardships when transitioning to home-based care as they must negotiate divisions of labour within the family while managing the emotional and economic costs of treatment. In spite of these hardships, patients gain a significant amount of agency within the health care system upon their enrollment. Rather than being passive recipients of downloaded work and costs, they actively manage their care by directing the actions of frontline health care professionals, and influence wider care practices at the program level.