The family experience of caring for the neurosurgical patient: needs and expectations towards care

Abstract

Despite health care politics have currently stimulated home care for chronic ill patients, great part of families take the responsibility of providing homecare even without being well prepared and so, facing a great sort of difficulties, which are worsened by their low income. The purpose of this study was to know how families experience and provide homecare to a specific type of chronic ill patient, the neurosurgical one. Using qualitative methodologies and phenomenological approach, the study was carried out in the neurology sector of a philanthropic hospital, among relatives observed and interviewed during the internment and, later, at their homes. From the content analysis of their speech, four empirical categories had emerged: living in the illness universe; communication with health team: space of technics and interaction; between pain and hope: the language of feelings; reconstructing the daily life. The findings point out the autonomy promotion of home caregivers and the need of articulation among the different health services.