O olhar de pessoas com síndrome de Down e de seus familiares sobre a participação em um projeto com aulas de dança

Abstract

Down syndrome (DS) is a genetic condition characterized by a chromosomal alteration and is one of the leading causes of intellectual disability. In the development of children with DS, the family plays a crucial role as a source of emotional and social support. Features such as hypotonia, ligament laxity, and language difficulties may limit environmental exploration and social interaction. In this context, motor activities especially dance stand out for promoting not only motor improvements but also social and emotional benefits, including enhanced self-esteem, communication skills, and a sense of belonging. Despite these benefits, few studies consider the perspectives of individuals with disabilities themselves. Active listening is essential to ensure that programs and services genuinely address their needs and rights. Additionally, the perspectives of families offer valuable insights, as they closely observe the effects of such experiences. Given this, the aim of this dissertation was to analyze the perceptions of both family members and individuals with DS regarding their participation in a dance class project. The participants were part of Down Dança, an initiative of project Carinho, a university extension program with 28 years of experience offering motor activities for people with disabilities. The study involved 18 family members (parents, a sister, and grandparents) and 15 adults with DS, totaling 33 semi structured interviews. Data analysis was conducted using content analysis methodology. The dissertation resulted in two scientific articles. The first explored the perspectives of family members regarding participation in the project and identified five thematic categories: (1) emotional experiences resulting from participation; (2) social interactions and mutual support among families; (3) perceptions of belonging and identity; (4) commitment and involvement with the project; and (5) development and engagement through dance. The second article focused on the perspectives of the participants with DS and revealed three categories: (1) the social dimension of the project: building interactions and emotional bonds; (2) participation in the dance classes: satisfaction, enjoyment, and fulfillment; and (3) belonging and identity within the project context. The findings from both articles highlight the transformative role of dance in the lives of individuals with DS, emphasizing Project Carinho as a space of belonging, expression, and empowerment. The narratives from participants and their families showed significant impacts on self-esteem, social relationships, autonomy, and mental health. The project also proved to be a space of mutual support, strengthening connections among participants and their families. Dance emerged as a powerful form of expression and visibility, contributing to the inclusion of individuals with DS in social and cultural spaces historically denied to them. It is concluded that initiatives such as this are essential for fostering meaningful inclusion and ensuring the full exercise of rights for people with Down syndrome.