Resumen

PINEDA PEREZ, Eloy J  y  GUTIERREZ BARO, Elsa. Down syndrome: vision and perspective from the family context in the special day care centre . Rev Cubana Med Gen Integr [online]. 2008, vol.24, n.2. ISSN 0864-2125.

INTRODUCTION: Down syndrome is a genetic disease due to chromosomal aberration. Although it is still a health problem with a great social and family impact, the family is considerably misinformed about important elements and there are different criteria about the possibilities and achievements of these children. OBJECTIVE: to determine the knowledge of the parents about the evolution and future possibilities of the children carriers of this genetic disease, the difficulties of the neuropsychomotor development and the different types of disability. METHODS: a quasiexperimental interventional research with a before-after study design was conducted in a non-equivalent group at "Zunzún" Special Day Care Centre, in Playa municipality, Havana City, from March to June, 2007. The universe was composed of all the mothers or fathers of the children with Down syndrome enrolled in this institution. The sample consisted of all the mothers or fathers of the children of the universe. There were 34 mothers and 4 fathers that lived in various municipalities of Havana City. The research had 3 stages and 3 workshops were conducted. The data obtained were tabulated by the simple count method and they were expressed in percentages and reflected in tables. RESULTS: before the workshops the parents recognized the disabilities in their children. The most frequent were speech disorders, difficulties in self-validism and to obey orders, and to believe in the possibility of the reintegration to society. After the workshops, the recognition of these incapacities, as well as the need to receive information to encourage the child, and the parents' hope in their children increased. CONCLUSIONS: the workshops conducted proved to be effective to improve the knowledge and education of parents about the disease, and the parents' expectations in the future of their children rose.

Palabras clave : Down syndrome; self-validism; disability; vision; perspective.

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