Demandas de mães de crianças com paralisia cerebral em diferentes fases do desenvolvimento infantil

Abstract

Studies have demonstrated that providing instruction for and intervening in the family of children with special needs during their treatment process may represent an effective way of ensuring adequate parental support. Moreover, since each phase of the development of a child with special needs may create novel demands, the professionals have shown to be required to review their actions throughout the treatment. The current study aimed to identify the major demands from mothers of children with severe cerebral palsy as regards the instructions provided by the professionals involved in their child s treatment as well as other sources of support for child care and development. Three important milestones in child development were taken into account: (a) preschool period; (b) early school period; and (c) early adolescence. Firstly, the Gross Motor Function Classification System (GMFCS) for Cerebral Palsy was translated and cross-cultural adapted to be used by Brazilian professionals. Accordingly, it was translated to Portuguese and its content was analyzed. Back-translation was conducted to ensure equivalence. The participants were nine mothers of children with cerebral palsy, who were divided into three groups according to their child s ages. Semistructured interview was used to collect data on child care, treatment, accessibility, types and levels of support, questions, difficulties, expectations, and parent-professional relationship. The Collective Subject Discourse was the method used to analyze the interviews. The results were presented according to the demands for each of the phases, being later discussed by comparing groups. The results of this study demonstrate that difficulties, questions and concerns about child care varied according to the child s developmental phase. In the initial phases, the major demands were related to questions about the child s survival, the lack of knowledge about proper child care, difficulties with the child s general health and the insecurity about the characteristics of the disorder. After meeting these demands, the mothers started to create expectations and raise queries about the child s development and prognosis, suggesting that they started to worry about the acquisition of walking, language and independence. Concern over child s weight, length and sexuality and the emergence of deformities are raised as important demands in the period close to adolescence. This study intends to contribute towards both an improvement of knowledge in the area and a better understanding of these family needs by providing reflection tools and suggesting intervention practices with this population.