Rotina, necessidades e suporte de famílias de crianças com síndrome de down

Abstract

The families of children with disabilities may have necessities that need to be feed to allow quality interaction with their children. Based on the hypothesis that such necessities may be specific considering the child's age and disability, the present research aimed at: (a) to identify and to analyze the routine, necessities and families social support of children from 0 to 6 years with Down syndrome, and (b) to relate the socio-demographic variables, necessities and families social support of the children aged between 0 to 6 years with Down syndrome. It was participated in the study fifteen parents or guardians of children aged between 0 to 6 years with Down syndrome. The instruments used to collect the data were: (a) Brazil Criteria Questionnaire; (b) Survey on the family needs; (c) Survey of social support and (d) Semi-Structured interview script "Necessities, support and stimulation of families of children with disabilities" (which was prepared for this study). These instruments were applied in the form of interviews. Qualitative and quantitative data were obtained via the instruments. Qualitative data were analyzed via categories previously established in the interview script. Quantitative data were analyzed using descriptive methods (central tendency measures and dispersion). The Pearson's correlation coefficient was used to relate sociodemographic variables, necessities and families social support. The results showed that the greatest necessities of the families were related to the information about the child's disability and the support services that could assist in its development. In relation to the social support, the families were supportive to diverse situations. Considering the routine, most of the children had certain schedules to do the day-to-day activities, a therapies routine and intensive care and they was highly stimulated inside and outside the home. It was also noted that they had a diversity of toys and materials in the home. When correlating the necessities, social support and sociodemographic variables data, it was verified that: (a) the higher the participants' schooling, the greater the total social support; (b) the higher the number of siblings, the greater the support needs; (c) the older the children, the greater the need to explain to others; (d) the higher the per capita income of the family, the greater the total social support and the need to explain to others, and (e) the longer the age of the participants, the greater the need for community services, as well as correlating with the total necessities. It is concluded that this study specifically covered families of children with Down syndrome, and thus, it serves as a guide to possible interventions, considering the specificities of the age group and the target population.