O cuidado às crianças com condições crônicas e a garantia de seus direitos sociais

Abstract

Children with chronic conditions have risen in the last decades, however, meeting the needs and social inclusion of these children are hampered by the difficulties that families experience in home care and access to health, social care and educational services. General objective: to analyze the social rights guaranteed to children with chronic conditions. Specific Objectives: to verify Brazilian public policies related to social rights of children with chronic conditions; and analyze access of children with chronic conditions to services provided by educational, health and social care institutions. Method: was carried out documentary research of Brazilian legislations that constituted social policies and multiple ethnographic case study with a qualitative approach. As a theoretical and methodological framework, we adopted the approach on citizenship and social rights and the principles of the sociology of absences and emergencies developed by Boaventura Santos. From the indication of children with chronic conditions in services of the northern region of Belo Horizonte city, state of Minas Gerais, the experiences of 3 children with chronic conditions, and their families were studied through interviews with family members, managers and professionals from health, social assistance and education institutions, also participant observation of children and their families in social spaces. The criteria for the indication were a child with a chronic condition (according to Stein and coworkers) and the family experience regarding the guarantee of social rights. For the data analysis was used the Critical Discourse Analysis proposed by Fairclough and the development of ecomaps. Guidelines and standards regulating research involving human beings were addressed. Results: Social rights are constitutionalised for children with chronic diseases and with disability in the texts of Brazilian legislation, but it is still incipient to regulate the actions of public policies to achieve them. In the municipality, service and action offerings are less than the demand of children with chronic conditions and their families and the exclusion processes persist, revealing the hegemony of neoliberal ideologies and normalization in social practices. Access to services for guaranteeing the children´s social rights was ensured when family members constituted nonconformist and politicized identities and the professionals represented children with chronic conditions as subjects of rights, to be valued and included in the society. There was little expressiveness of nurses' performance. Conclusions: It is necessary to prioritize the implementation of social policies to ensure the rights of children with chronic conditions; to break with the hegemonic ideologies that supports professionals background who work in health, social assistance and educational institutions and to provide information to the families of these children so that they can be constituted as political subjects. The care of children with chronic conditions for citizenship demands in family and professional practices the construction of subjectivities that break hegemonic ideologies and recognize these children as subjects of rights, acting to defend their welfare and social inclusion. Nursing contributions: It is urgent to seek ways to increase nurses' participation in the care of these children, being necessary to include competences for the defense of well-being and social inclusion in their formation. It is recommended to use the ecomap to analyze the organization and social network of families, guiding recommendations on network resources.