Análise das características e necessidades de famílias de crianças com deficiência: um estudo multicêntrico

Abstract

The condition of vulnerability is understood as a set of factors that make it impossible to protect individual or collective interests, resulting in a condition of people’s reduced autonomy. Regarding impairment, in the social model of disability, it is conceived as a multidimensional phenomenon, resulting not only from biological conditions, but also from the interaction between people and their physical and social environments. In relation to the family, when the parents discover that the child has a chronic condition, this new situation causes strong changes in their routines, placing them in a condition of greater vulnerability. As for the care of children, since the 2000s, interest in their integral development has increased worldwide; however, actions aimed at this population are still insufficient to respond to their needs. Thus, in view of the greater vulnerability of family members of children with disabilities, and the actions, which are aimed at children, are still insufficient to respond to demands, this study becomes important as it aims to analyze the characteristics and needs of family members of children with disabilities in a multicenter study. This study has a mixed methods approach. A total of 113 family members from Sobral and Curitiba participated in the survey. For data collection, semi- structured interviews were conducted, and a form was applied. The two best known rights by the members of family from Sobral and Curitiba were the right to school and the Benefit of Continued Provision, with the right to school support professionals, little mentioned in both locations. Among the reports of children’s evolution resulting from interventions in health services, there is an improvement in social behavior and functional capacity, development of speech and communication, development of reading and writing skills and decrease in the use of medications. The greatest difficulties faced by family members in Sobral were: when there is a need for a family member to leave the house to solve specific situations and they do not have the support of others to stay with the child; when the family member needs to go out with the child and finds it difficult to handle this situation; the anguish of the mother due to the lack of competence of school professionals in dealing with the child; discomfort with discrimination that the child suffers from his own colleagues; difficulty for the family member to address the child’s self-centered and untimely characteristic; the mother's anguish at not knowing, in many moments, what the child’s wishes and needs are; and the mother’s need to seek refuge in order to know how to better deal with apparently stressful situations in her daily life. In Curitiba, the difficulties were: the mother’s anguish due to the fact that the child does not commonly express his or her essential needs; the discrimination from society faced by family members; the difficulty found by the parents due to the children having trouble in knowing how to deal with setbacks; the parents’ struggle in “taking” children out of their specific routines; barriers in accessing public transport services due to the lack of an adequate structure, making it more complicated to get around the city. The condition of tackling adversities and challenges arising from the care of a child with a disability imposes a greater condition of vulnerability on the family members due to multiple factors, which, when well understood, can make this population less susceptible to various unfavorable health situations and reduce the child’s disability