Informação, paralisia cerebral e solidariedade em rede: as experiências maternas em perspectiva

Abstract

The aim of this study was to understand and place into perspective the meaning and contributions of information on the relationships with and the care and handling of children diagnosed with cerebral palsy, focusing on the mothers experiences. The study was based on discussions on information, cerebral palsy and the issue of social networks, which provided its theoretical support and demonstrated the potentialities and contributions of the interaction between Information Science/Health Sciences. Through Análise de Redes Sociais-ARS (Social Network Analysis)[1], the study aimed at pointing out the informational interactionswhich these mothers developed throughout their experience. The research was carried out in Belo Horizonte, specifically at the Serviço de Terapia Ocupacional Infantil do Ambulatório Bias Fortes (Bias Fortes Ambulatorys Child Occupational Therapy Service), an entity linkedto Hospital das Clínicas (Clinical Hospital) of the Universidade Federal de Minas Gerais (Federal University of Minas Gerais)-STOI-ABF/HC-UFMG, and at the Associação Mineira de Reabilitação-AMR (Rehabilitation Association of Minas Gerais state). The study was done through mapping of its constitutive universe, represented by professionals and children, whose participation was conditioned by the sampling criteria. The research combined quantitative and qualitative methods, in which semi-structured interviews and participativeobservation were used to collect the data. The data was consolidated, treated and discussed through thematic analysis. From the centrality of the results, a behavior involving multiple concerns and aspects was observed among the mothers in favor of their children. Informationbecame a fundamental tool in the process of increasing awareness concerning their childrens health; in learning and overcoming difficulties, even if they conceived the role played by this information in different ways. The information was extremely valuable as it contributed, especially, to the care given to the children and also in the acquisition and adoption ofmechanisms that promote their social integration. It was also observed that the visualization of the interaction network weaved by these women-mothers, besides presenting the central position occupied by their children, also accentuates the informational component subjacentto manifestations of solidarity in a network.