How do social and economic vulnerabilities shape the work of participating in care? Everyday experiences of people living with kidney failure in Argentina

Abstract

Background: A new chronic patient has emerged, with a burden of symptoms and treatment. Patients with kidney failure (KF) require complex and expensive treatments, and in underresourced contexts, they struggle to obtain quality and timely care, even in countries with universal health coverage. We describe how, in such a setting, social structural factors and control over services placed by the system affect the burden of treatment of patients. Method: This qualitative study was undertaken in Buenos Aires, Argentina. Semistructured interviews were conducted with patients with KF (n = 50) and health professionals (n = 14) caring for these patients. Additionally, three types of health coverage were included: public health, social security and private healthcare, with diverse socioeconomic backgrounds. Findings: Patients' agency to meet demands is extended by relational networks with redistributed responsibilities and roles. Networks provided logistical, financial, emotional support; indeed, patients with limited networks were susceptible to rapid health deterioration, as treatment interruptions could not be identified in time. Control over services translated into scarce information about treatment options, changing dialysis schedules, lack of contact with transplant teams, and new rules to access medication or make requests. For any type of coverage, there was an economic burden related to noncovered medication, copayments, travel, caregivers, specialized diets, and moving to a city offering treatment. Many patients reported economic difficulties that prevented them from even affording meals. Hardships worsened by unemployment because of the disease. Some patients had migrated seeking treatment, leaving everything behind, but could not return without risking their life. Transplanted patients often needed to re-enter the labor market against a background of high unemployment rates. Conclusion: While health policy and practices encourage self-management, the patient may not have the capacity to meet the system's demands. A better understanding of BoT could contribute to improving how patients experience their illness.