Jovens com síndrome de Down: desafios para a autonomia

Abstract

Youth is a period of transition from adolescence to adulthood, in which physical, cognitive, emotional and social changes occur that result in the acquisition of skills and competences that contribute to the development of autonomy. Autonomy, in turn, is a process that enables the individual to act on himself and on the environment. The development of autonomy is influenced by several factors such as: self-knowledge, personal skills, physical and mental health and, above all, having had, since childhood, a life based on responsibility and the acquisition of personal autonomy. In this sense, young people with Down syndrome (DS) have perceptual-cognitive limitations and few opportunities to acquire the necessary skills to acquire their autonomy. Therefore, it is of fundamental importance that parents become aware that children with DS have potential, which need to be stimulated to acquire personal responsibilities and competences. The thesis addresses the challenges of autonomy for young people with Down Syndrome. The study consists of four articles, the first and second were written in the model of a literature review, whose objective is to evaluate the bibliographic production consisting of research reports indexed in the CAPES and SCOPUS databases on the subject. The third article presents the actions of the main associations/institutions in the USA, Spain and Brazil that assist people with Down syndrome with a focus on autonomy. The fourth article is empirical, produced with the aim of presenting and discussing the results of a qualitative research, whose general objective was to understand the challenges that young people with Down Syndrome face to acquire autonomy and the role of parents in this process. To this end, 20 young people with Down Syndrome aged between 15 and 29 years old and 20 biological parents of these young people participated in this study. A qualitative study was carried out through semi-structured interviews. The results of the study showed that with regard to the concept of autonomy, it represents the idea that individuals can live their own lives, based on their motivations, desires and beliefs, without being manipulated or driven by external forces. It is also verified that parents need guidance on the importance of stimulating the autonomy of young people with DS. Regarding the young, it was possible to perceive that even not understanding their genetic condition and the concept of autonomy, most showed the desire to have an independent life like any other young person