Perspectiva materna sobre variáveis familiares e serviços oferecidos aos filhos com síndrome de Down e/ou autismo

Abstract

This research was divided into two studies, the aims of these studies are: 1: (a) identifying and comparing the needs, the social support and the parent satisfaction of preschool children aged zero to six and elementary school aged six to nine with Down´s syndrome and autism; (b) identifying and comparing the family system of preschool children aged zero to six and of elementary school aged six to nine with Down´s syndrome or autism; (c) describing and comparing the families opinion about the services offered to their preschool children from zero to six years old with Down´s syndrome and (d) correlating the variables. The aim of study 2 was: to identify and compare the needs, the social support and the parental satisfaction of children with Down´s syndrome or autism. The mothers were divided into two groups, G1 (EI) consisting of 20 mothers of children with Down´s syndrome or autism matriculated in early childhood education and G2 (EF) mothers of children with Down´s syndrome or autism matriculated in elementary school until the third year. Contact with the mothers through five municipal schools for early childhood and elementary school and three groups for the families. The tools used in this study were: Family system characterization questionnaire, Family needs questionnaire, Social support questionnaire, Parental satisfaction questionnaire and a semi-structured interview script. The data collected were quantitative and qualitative. The quantitative data were used to make a comparison between the groups using the t-test, and the qualitative data were analyzed though elaboration of categories. It was used Person´s correlation test to correlate the quantitative data. Correspondingly, the comparison between the groups demonstrated that G1 (EI) showed higher information requirements on how to deal with their children, a greater number of people to count on a higher level of satisfaction with the support received. G2 (EF) showed greater need for time to speak with the children´s therapists and teachers. When it comes to school services, in both groups there are still children who do not receive special education assistance and, in most cases, the school does not accomplish referrals to public services or answer parents´ questions. In terms of support networks, both groups indicated the need for specialized professionals and financial backing. For services, most mothers appeal to private institutions or/and associate public and private. It was also related as a positive point in the majority of attention and the manner professionals deal with children at school. When comparing study 2, it was demonstrated that mothers of children with DS, in comparison with the mothers of children with autism, presented a greater need for information about the way the child grows and develops. Still, the mothers of children with autism had needs in issues involving explaining their children´s situation and paying expenses for therapists and other services. The data highlight the importance of more effective support networks for families of children matriculated in public school system and provide relevant subsides for public policies, programs and actions, especially at the municipal level.