Criança e família convivendo com a doença crônica: mesossistema em ligação com a vulnerabilidade programática

Abstract

Este estudo objetivou conhecer as percepções de familiares de crianças que convivem com doenças crônicas sobre os componentes das situações de vulnerabilidade relacionando-os com a Teoria Sócio-Ecológica. Trata-se de uma pesquisa qualitativa, exploratório-descritiva, realizada com nove familiares de crianças que convivem com doenças crônicas e hospitalizadas em um hospital-escola do município de Porto Alegre, Rio Grande do Sul, utilizando-se dinâmicas de criatividade e sensibilidade e o referencial de análise de conteúdo. Emergiram três categorias, sendo aqui explorada a segunda, vulnerabilidade Programática e sua inserção no mesossistema das Instituições de Saúde. O componente institucional ou programático da vulnerabilidade conecta os componentes individual e social, envolvendo o monitoramento de programas de prevenção e cuidado. Observou-se uma ligação entre os sistemas do ambiente ecológico e os componentes das situações de vulnerabilidade, que ao ser identificada, possibilita o incremento das ações de saúde voltadas a criança e sua família.

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

“…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) . 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) .…”

“…Other factors identified that hinder the access to health services are the long distances, inadequate transport, and lack of clarification regarding the procedures needed to use the services. Studies have shown that these factors contribute to discontinuity of care and are the main reasons why these families prioritize greater complexity care, a choice that seeks the resolution of acute problems or problems recognized by them as priorities (7,29,32) .…”

Strategies of Families in the Care of Children With Chronic Diseases

“…25 Caring for the needs of children with chronic disease becomes part of daily family life, occupying the living of the family, which feels responsible for maintaining the quality of life of the child. 26 In a research that addresses the factors influencing the quality of life of caregivers of children with chronic disease, participants reported having physical pain during the course of childcare.…”

Cuidado à família da criança com doença crônica

“…To evaluate the factors associated with the time taken to access the specialists and explore the issues experienced by parents before evaluation in a specialized service. As for the year of publication, there was one (2.57%) article published in the years 2007 43 , 2009 14 and 2010 37 , three (7.69%) articles published in the year 2016 12,40,47 , five (12.82%) in 2012 20,29,31,41,44 , six (15,38%) in 2011 21,26,34,36,39,49 seven (17,95%) in 2015 22,24,45,48 and 2014 13,23,30,32,35 and eight (20,51%) in 2013 25,33,38,42,46,50 .…”