O cuidado no cotidiano de adolescentes com necessidades especiais de saúde: implicações para a enfermagem

Abstract

A descriptive, exploratory study, with a qualitative approach, based on the work of Paulo Freire. The aim was to understand the care in the daily life of adolescents with special health care needs.. The specific objectives were: know how the care of adolescents with special health care needs is handled on a daily life; know the emancipatory movement of adolescents with special health care needs; describe the social network of adolescents living with special health care needs. Data were gathered at an outpatient paediatrics clinic of a university hospital in southern Brazil by means of semi-structured interviews and the use of genograms and ecomaps between September and November of 2016. The participants were 35 adolescents aged between 12-18, served at the outpatient clinic, in need of health care that were aware of their condition and able to state it. The corpus consisted of interview transcriptions that were analyzed according to Michel Pêcheux discourse analysis. The study was approved by the research ethics committee of the Federal University of Santa Maria under protocol number 1.673.887. The analytical categories, which demonstrate how the care of adolescents is handled and the compliance with social and care networks, led to the following thesis: adolescents with special health care needs are social beings, creators of stories and culture, and have the potential of playing an active role as subjects in the world. Those adolescents give signs of emancipation, oppression, alienation, and adaptation to their daily life dealings. Emancipation enables them to be more (in the Freire’s perspective), revealing that adolescents were not subjected to their condition. Rather, they seek to be recognized/known as adolescents. It could be concluded that caring for those adolescents begin at childhood, and that families reorganize themselves or change to cater for their needs. Upon reaching adolescence, they give signs of emancipation as they rise above their special health needs condition, thus assuming control of their own care. Emancipation denies submission to health condition and, as a result, enables adolescents to be more. They, in turn, aim at being recognized as individuals. The implications to the nursing profession involve (ac)knowledgement of such groups of adolescents and their health care needs that begin at childhood and extend to adolescence as well as the role families should play in the process of caring. The findings in this study indicate the pressing need to deal with this theme in nursing training programmes, as well as paving the way for further research and extension.