EXPERIÊNCIA DOS CUIDADORES FAMILIARES SOBRE A ALTA HOSPITALAR E O CUIDADO DOMICILIAR APÓS O ACIDENTE VASCULAR CEREBRAL.

Abstract

The transition from hospital to home care after a cerebrovascular accident (CVA) is recognized as a complex period that has been neglected and for which health interventions should be planned to promote continuity of care, adaptation and preparation to face the demands of care, especially for family caregivers of people with complete dependence. The objective of this qualitative case study research was to understand the lived experience of family caregivers of people who survived a CVA, in the process of transition from hospital discharge to home care. Twelve family caregivers participated, residents in a municipality in western Bahia, Brazil. Data were collected using semi-structured interviews conducted in their homes, and the interpretative thematic analysis was conducted using the process of step reduction, data organization, identification of units of meaning, construction of thematic nuclei, and interpretation of results. The thematic nuclei identified were, the discharge process: feelings and preparation of caregivers; and, home care: changes in family life, the annulment of the life of the caregiver and coping through love, social support and faith. The participants perceived the hospital discharge process as a decisive moment, with contradictory feelings regarding the need for home care, such as fear, worry and insecurity of not being able to provide care and happiness, and overcoming the opportunity to return home with the family after hospitalization. Weaknesses in support for preparation of hospital discharge related to communication deficits of health professionals and lack of welcoming in the hospital discharge process were mentioned. The changes in family life, overload and caring with love were reported; social support and faith as tools for dealing with the difficult process, aloneness and suffering of home care. This experience represented for these people, the need to assume the care of someone who was totally dependent for activities of daily living, beyond the physical, psychological and social limitations in life and in social roles and family relationships. The need for care models that have people as their central focus, the continuity of care, the shared decision-making about the necessary and possible therapies was evident, considering the socioeconomic context of each family nucleus, so that the care transition process is experienced in a safe and effective manner, promoting rehabilitation, and the social and community reintegration of these people.