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Abstract
To analyze the experiences of families in the exercise of the rights of children with chronic conditions in public health, education and social assistance institutions. ethnographic multiple case study, with qualitative approach, following the theoretical approach of Boaventura Santos. Experiences of the families of these children in a city were studied through interviews with family members, managers and professionals from social institutions (35), participant observations in social spaces (13) and creation of eco-maps (3). Critical Discourse Analysis was performed. the offer of services is lower than the demand, and exclusion processes persist. Given the hegemony of neoliberal and normality ideologies, meetings between family members and professionals revealed obstacles to civil rights; however, when these ideologies were challenged, the realization of their rights was enhanced. the care to promote civil rights requires family members, managers and professionals to develop subjectivities that overcome neoliberal and normality ideologies, recognizing these children as subjects of law.
Highlights
METHODIn the last decades, we observed the increase of childhood chronic conditions, partly as a result of political, technological and scientific advances in newborn and child health care(1-3)
Restrictions on the care provided by NASF teams, in primary care, by medical specialties and in rehabilitation in specialized care were observed
There was no available transportation to health services that were not offered in the district of residence, such as rehabilitation services
Summary
We observed the increase of childhood chronic conditions, partly as a result of political, technological and scientific advances in newborn and child health care(1-3). Families struggle to provide home care for children with chronic conditions (CCC), to access and use health services and its various sectors, and to obtain medication, special diet and technological equipment(1,4-6) These difficulties may hinder the continuity of care and the fulfillment of the children’s needs, compromising the possibilities of autonomy and social participation(1). Chronic conditions in childhood encompass biological, psychological and cognitive conditions that last or can last for at least one year These conditions have one or more of the following effects: restrictions in function, activities, or social role compared to children of the same age with no changes in growth and development; reliance on compensatory mechanisms - medication, special diet and technological equipment - or dependence on care due to functional limitations; and service use or need above what is usual for the child’s age, in relation to health and education services(2). It is relevant to investigate the experiences of families while trying to ensure access and use of services provided by educational, health and social care institutions, aiming to identify challenges, and contribute to their recognition and to the reformulation of social public policies(1)
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