Transição do cuidado: navegando pelos desafios vivenciados por cuidadores familiares da alta hospitalar ao cuidado domiciliar

Abstract

INTRODUCTION: Stroke transforms the living conditions of the family, which will assume the role of caregiver and legally responsible person. This sudden event does not give the family time to adjust to the new role, and can cause high levels of anxiety and depression in the family member. Given that the complexities of stroke establish a dependency for carrying out basic activities of daily living and that many survivors receive hospital rehabilitation and specialized care, and require family caregivers to provide most of the long-term care. OBJECTIVE: To describe the experience of family caregivers of stroke survivors regarding the care transition process after hospital discharge. METHOD: Qualitative descriptive study with the participation of nine family caregivers of patients who were readmitted to a private, highly complex hospital institution in the metropolitan region of Goiânia, Goiás, Brazil, in 2018. Data were collected through interviews semi-structured and analyzed through familiarization with the data, identification of codes, grouping of codes into themes, review of themes, definition and final naming of themes, elaboration of the description and interpretation of the meanings expressed by participants in each theme. The study was evaluated and approved by the Research Ethics Committee of the Pontifical Catholic University of Goiás under protocol number CAAE: 03840518.2.0.0.0037. RESULTS: The transition from hospital to home care for patients after cerebrovascular accident (CVA) places family caregivers facing multiple challenges, which were grouped into three main themes based on the qualitative analysis implemented: 1) gaps and challenges in the care system health and hospital care; 2) challenges in structuring and managing home care; 3) emotional complexities in home care. These interconnected themes highlighted the complexity and multidimensionality of the caregiver experience of post-stroke individuals. The experience of family caregivers in home care after hospital discharge described demonstrates that the act of caring results in physical and emotional challenges for the caregiver, who faces emotional struggles and daily dilemmas. The high workload correlates with a myriad of conflicting emotions, including exhaustion, dedication, abdication of personal life, love for the patient and a sense of obligation. FINAL CONSIDERATIONS: The challenges faced by family caregivers reinforce the need for continuous multidisciplinary support to ensure effective home care. The results highlight the need for well-articulated health policies and care practices that meet the needs and promote the well-being of family caregivers to ensure adequate rehabilitation and prevent hospital readmissions.