Beyond Adherence: Relational approaches to care in the lives of kidney transplant recipients

Abstract (English)

Paediatric kidney transplant recipients face higher rates of poor outcomes than any other age group as they enter young adulthood, a statistic that is often attributed to non-adherence. While it is clinically proven that taking anti-rejection medication as prescribed is vital to prevent rejection of a transplanted organ, a fixation on adherence obscures the importance of supportive care and effective medical and social systems, placing the burden of responsibility solely on the patient. This paper examines who is responsible for the intensive medical regimen required to prevent graft loss in transplant recipients through a critical examination of the normative medical discourse of adherence in this unique area of medicine. Drawing on Australian ethnographic research with kidney recipients and their caretakers, it examines how adherence is enacted, moralised, and resisted in the lives of patients as they navigate the transition from paediatric to adult care. Findings from this project reveal the way a focus on adherence shapes medical care for recipients by fixating upon individual responsibility, obscuring the critical role played by health professionals, medical systems, families, and communities. In doing so, it foregrounds continuities of care that are relationally distributed between people, pharmaceuticals, and care systems.