Cuidado de enfermagem à criança com necessidades especiais de saúde: demandas de educação em saúde de familiares

Abstract

Children with Special Health Care Needs (CSHCN) represent an emerging customer demands have care at home, indicating the relevance of preparing the family for this care. It is a qualitative research aimed to describe the demands of health education of family members caregivers necessary for the process of home care of the CSHCN; to describe the process of care developed by the family/caregivers to these children; discuss the implications of the clinical fragility and vulnerabilities of CSHCN for professional care the child and his family from the perspective of health education for the maintenance of everyday life. For the production of the data we chose the Creative Sensitive Method (SAM) mediated by the dynamics of creativity and sensitivity (DCS). Consolidated the DCSs combine qualitative research techniques such as press conference, participant observation and group discussion. The DCSs were developed body know sewing stories and dynamics. The first aims to scale the process of home care in space and the second is to indicate individual problems and difficulties that may have roots social collective. The study subjects were ten family members/caregivers of children admitted to the Pediatric Inpatient Unit (IPU), University Hospital of Santa Maria (HUSM) at the time of compiling the data. Data were submitted to Discourse Analysis (DA) in its current French. In conducting the study was followed by Resolution 196/96, which regulates the conduct of research involving humans. The results show two dimensions of the process of care of children: a subjective and objective. At first, the family/caregivers develop a care to preserve the lives of these children, based on (pre)occupation. Through the (super)protection of the child, family members believe they can reduce health risks to the child. In this regard, careful (about) comes from the natural sum of efforts of the family, which perform continuous care of nature, complex to maintain the child's life, giving up their professional activities and personal desires. Spirituality emerged as a support to alleviate the suffering. In the objective dimension, has been the network of children and familial restricted to close relatives such as parents, grandparents, aunts and godmothers, and that the demands of education in health care for part of the experience, knowledge of the experience made , and the network of primary health care is disjointed, unable to meet the demand of its clientele. We conclude that for family members/caregivers of children the subjective dimension of the care process overlaps with the technical knowledge. For them, rather than performing a procedure, the important thing is to learn to live with the new situation and in maintaining the child's life. It is recommended restructuring the system of reference and counter and that nurses recognize the subjective dimension of the process of care of children by family members/caregivers in the context of the home, enabling these children a life with more quality.