Social rights of children with chronic conditions: a critical analysis of brazilian public policies

Abstract

Direitos sociais das crianças com condições crônicas: análise crítica das políticas públicas brasileirasDerechos sociales de los niños con condiciones crónicas: análisis crítico de las políticas públicas brasileñas políticas relacionadas à atenção às crianças com doença crônica e pessoas com deficiência nos âmbitos dos direitos humanos, saúde, assistência social e educação. Foi realizada análise crítica do discurso de três legislações selecionadas. Resultados: As crianças com condições crônicas são contempladas nas legislações pela representação de crianças com doenças crônicas ou com deficiências. Verificam-se discursos do modelo social da deficiência, da criança e da pessoa com deficiência como sujeitos de direitos, da responsabilidade do estado na garantia de direitos sociais e da corresponsabilidade da família. Evidenciaram-se discursos associadas à ideologia de direitos humanos em conflito com a ideologia de normalização. Conclusão: As ações definidas para esse grupo são incipientes e com indícios de restrição de financiamento, revelando lutas ideológicas. Palavras-chave:Crianças com deficiência; Doença crônica; Seguridade Social; Defesa da Criança e do Adolescente; Enfermagem Pediátrica. resumenObjetivo: Analizar las políticas públicas brasileñas actuales que aseguran los derechos sociales de los niños con condiciones crónicas, en las áreas de salud, asistencia social y educación. Método: Investigación documental de las legislaciones que configuran políticas relacionadas a la atención de los niños con enfermedad crónica y personas con discapacidad en los ámbitos de los derechos humanos, salud, asistencia social y educación. Se realizó un análisis crítico del discurso de tres legislaciones seleccionadas. Resultados: Las legislaciones contemplan a los niños con condiciones crónicas mediante la representación de niños con enfermedades crónicas o con discapacidades. Se verifican discursos del modelo social de la discapacidad, del niño y de la persona con discapacidad como sujetos de derechos, de la responsabilidad del estado para garantizarles los derechos sociales y de la corresponsabilidad de la familia. Se evidenciaron también discursos asociados a la ideología de derechos humanos en conflicto con la ideología de regulación. Conclusión: Las acciones definidas para ese grupo son todavía incipientes y se notan indicios de financiación limitada, revelando luchas ideológicas.

Itinerário da criança com microcefalia na rede de atenção à saúde

“…Early identification of the diagnosis of microcephaly favors the intervention and care plan of the child with the greatest opportunity to initiate early stimulation, which will favor the development of their potential. 15 It is noteworthy that the diagnosis of microcephaly brings with it several aspects that may restrict the therapeutic itinerary, such as the existence of qualified professionals to recognize the signs of the disease and to communicate the diagnosis. 16 In this sense, it is emphasized the need for professional training not only to identify the signs of microcephaly, but also for a careful and qualified listening to mothers, as they are the ones who take care of their children daily and, often, are the first ones to recognize signs of developmental delay.…”

“…20 Therefore, government instances that have the power to guarantee the social right of children with microcephaly should develop specific health actions to meet the needs of this population and invest in resources that universalize the coverage of services, focusing on the completeness of care. 15 Faced with numerous weaknesses in the support network, the solidarity developed between mothers of children with chronic diseases who share the same fears, difficulties and anxieties is characterized as a fundamental device for emotional support. The sharing of experiences enables the interaction of experiences, Itinerary of children with microcephaly Pedrosa RKB, Guedes ATA, Soares AR, Vaz EMC, Collet N, Reichert APS the reception of pains, the encouragement to overcome the adversities of daily care and the construction of other visions about reality, thus weaving a support network of their own.…”

Factors associated with the discontinuance of outpatient follow-up in neonatal units

“…Assistance to children with continued care needs in the healthcare network is a challenge. There is a lack of knowledge regarding the quantity of children (26) , as well as regarding their specific care needs (27)(28) . The assistance has been made by providing programmatic actions that do not include their specificities and there is a lack of strategies to identify them (28)(29) .…”

“…The assistance has been made by providing programmatic actions that do not include their specificities and there is a lack of strategies to identify them (28)(29) . Additionally, on the national scene, it is possible to observe the incipience of public policies strategies and actions aimed at children with chronic conditions (26) , as well as the unpreparedness of basic care professionals to meet the specificities of needs of this group of children and difficulty of access to specialized services due to offer restriction (29)(30) .…”

Health Promotion in Care for People With Chronic Non-Transmitable Disease: Integrative Review

“…Emphasis is placed on guidelines that can improve people's knowledge of their health condition, those related to lifestyle changes, healthy eating, and exercise. [22][23]28,[33][34][35][36][37][38][39][40][41][42][43][44][45][46] It is emphasized that educational actions when mediated by words such as adherence and sustained by interactions between these people and professionals are fundamental and increase health care. 34 Studies show educational practices directed to a collective approach.…”