Qualidade de vida de cuidadores primários de pacientes com AVC acompanhados no centro de reabilitação de Sobral - CE

Abstract

Stroke is the leading cause of acquired disability and, in its most severe forms, requires continuous support from a caregiver. Depending on the degree of impairment, patients may present different levels of dependence, which can compromise the caregiver’s physical and mental health due to burden and stress. From this perspective, it becomes essential to investigate the quality of life of these caregivers, often affected by emotional and psychosocial factors such as anxiety, stress, illness, and difficulties in social relationships. This study aimed to analyze the perceptions of primary caregivers of individuals with stroke assisted at the Rehabilitation Center in Sobral, Ceará, regarding the impact of caregiving on their quality of life. Levels of anxiety, depression, stress, caregiving burden, functional dependence, and quality-of-life dimensions were assessed. The study included ten caregivers and adopted a mixed-methods approach, employing a semi-structured interview, a sociodemographic questionnaire, the DASS-21, the Functional Independence Measure (FIM), and the WHOQOL-BREF. The results indicated that caregivers had difficulties defining quality of life, although they primarily associated it with physical and mental health. Caregiving was understood as a multifaceted phenomenon, encompassing spirituality and a sense of usefulness. The participants were predominantly female wives and daughters aged between 23 and 74 years, with low educational attainment and limited family income. Most patients presented a high level of functional dependence, which resulted in caregiver burden and health impairment, with subjective impacts such as anxiety, fatigue, and psychological distress. As technical products, the study generated a review article, an informational leaflet for caregivers addressing quality of life and mental health resources in Sobral, and a podcast entitled “Including Those Who Care: A Look at the Quality of Life of Caregivers.” The research contributes to broadening the understanding of caregivers’ experiences and provides support for the development of care practices and public policies directed toward this population.