Filipe e a Síndrome de Prader-Willi: um estudo histórico-cultural sobre vivência e desenvolvimento

Abstract

This research, developed within the scope of the Programa de Pós-Graduação em Psicologia da Faculdade de Educação da Universidade Federal de Goiás (PPGP-FE/UFG), and linked to the research line Psychology, Education, and Human Development, aimed to understand the role of social relationships in the constitution of the becoming of a child with Prader–Willi Syndrome (PWS), analyzing how these relationships influence the child’s self-perception and social experiences. The study is grounded in the understanding that PWS, beyond its genetic and biomedical implications, encompasses subjective and social dimensions of child development that remain underexplored within the Human Sciences. A qualitative life-history approach was adopted, grounded in Historical-Cultural Theory, which understands human development as a historical and social process constituted in and through social relations. The methodological pathway included the analysis of narratives produced by the child, the child’s mother, and professionals involved in the child’s care. The literature review was conducted through a careful and critical reading of the studies, and Voyant Tools was subsequently used solely as support for the analysis of term recurrence. The dissertation presents the genotypic and phenotypic aspects of PWS, addressing its genetic bases, clinical manifestations, and implications for physical, cognitive, behavioral, and social development. The results reveal that social relationships exert a significant influence on the constitution of the identity of the child with PWS. The way the child perceives themself as an individual is deeply shaped by social experiences constructed through interactions with others. In this sense, it was evidenced that the quality of these relationships can foster or hinder development, reinforcing the need for alterity-oriented social settings that recognize and value the singularities of all children.