Organization dynamics of family caregivers of the terminal patient in home care

Abstract

The care given to terminal patients at home alters family dynamics and requires reorganization of the roles of its members in order to meet the needs of such condition of life. The aim of this study was to describe the dynamics of organization of family caregivers of the terminal patient when facing home care. It is a qualitative study, carried out from January to July 2010, with 11 family caregivers of terminal patients, registered in a home care service of a university hospital in the South of Brazil. Data collection consisted of narrative interviews that were analyzed through content analysis. Two categories emerged: organization of the family to take care of the patient at home, and deprivations concerning the life of the caregiver responsible of caring for the terminal patient. It is possible to perceive the impact that a terminal disease causes in a family that experiences it, mostly, during home care. Such model of care has some benefits. It may, however, cause discomfort, financial difficulties and/or physical and emotional burden to the family caregiver, if it is not planned and followed up by health professionals. Thus, thinking about actions targeted at decreasing the difficulties faced by the family are measures that pertain to the nursing team and their counterparts.