Experiências de pacientes, familiares e trabalhadores da saúde: desafios e aprendizagens para o cuidado em situações de crise

Abstract

INTRODUCTION: The COVID-19 pandemic produced profound social, economic, cultural, and political transformations, demanding rapid institutional adaptations and modifying behaviors, social relations, and forms of care. Its effects were felt unevenly in different countries, regions, and territories, highlighting structural vulnerabilities and distinct capacities to respond to the health crisis. In Brazil, Manaus experienced the collapse of its health system, marked by insufficient hospital beds, a shortage of professionals, and a lack of essential supplies such as oxygen, which led to a Cooperation Plan between states of the federation to enable the transfer of patients from Manaus to other states, with the goal of making it possible to assist hospitalized patients. OBJECTIVE: To analyze the experiences of patients, family members, and healthcare workers in seeking care in the context of the COVID-19 pandemic. METHODOLOGY: Qualitative research, grounded in hermeneutic phenomenology focused on experiences of illness, suffering, and therapeutic journey. Conducted between March 2022 and July 2023 with patients from Manaus who had been hospitalized at the University Hospital of the Federal University of Maranhão, their families, and healthcare workers responsible for their care in São Luís. Semi-structured interviews were conducted on the Google Meet platform, after the completion of the Free and Informed Consent Form (FICF) and sociodemographic questionnaire. Participants included 26 healthcare workers, 12 patients, and 10 family members. The reports were submitted to content analysis. RESULTS: Presented in the form of two scientific articles. The first, “Paths and Obstacles in the Journey for Healthcare During the Covid-19 Pandemic: Manaus as an emblematic case,” analyzed the perspectives of patients and their families regarding therapeutic itineraries and experiences of illness in the context of a health collapse. Different strategies for seeking care were mobilized from the perception of the first signs of illness. Access to health services in Manaus was marked by fear of contamination, insecurity, and the perception of health units as a “war zone.” Transfer to São Luís was understood as a survival strategy, and the reception and treatment received aroused gratitude. The return to Manaus was marked by ambivalent feelings – relief, fear, and uncertainty – highlighting that the journey during the pandemic was marked by tensions and displacements produced in the relationships between subjects, emotions, social contexts, and political decisions amidst a global health crisis. The second article, “Experiences of Death and Disruptions in the Covid-19 Pandemic: Reconfigurations of care, grief, and daily life,” analyzed the meanings attributed to the disruptions and suffering resulting from the experiences of death lived by patients, family members, and healthcare workers during the pandemic. The social management of death and funeral rites was reconfigured, producing lasting impacts on the ways of experiencing grief. The pandemic was understood as a disruptive event whose effects persist latently in the bodies, discourses, and silences of those who experienced it, aggravated by the invisibility of losses and the insufficiency of reparative policies focused on care and collective memory. FINAL CONSIDERATIONS: The COVID-19 pandemic profoundly transformed individual and collective experiences of illness, care, and death. The restrictions imposed to control the spread of the virus produced disruptions in daily life, intensifying experiences of suffering, insecurity, and vulnerability. The health collapse went beyond the biomedical dimension, affecting social relations, care practices, and ways of processing grief. The temporal distance between the end of the health emergency and the consolidation of international agreements aimed at preparing for future crises reveals the limits of multilateral cooperation in defense of life and human rights. At the same time, the naturalization and silencing of lived experiences contribute to the delegitimization of the suffering of those who were exposed to the precariousness of care and social protection systems during the pandemic.