Abstract
to discuss the (in)visibility of children with special healthcare needs and their families in the Primary Health Care scenario. experience report about the difficulties faced by researchers from different regions of Brazil to locate children with special healthcare needs in the scope of primary care. the main reason for these children and their families to be "unknown" and, therefore, not assisted in PHC, is the fact that they are followed-up by institutions/outpatient clinics and specialized and/or public rehabilitation clinics, or even because they have private health insurance. Final Considerations: transferring care responsibility to the Primary Health Care teams to specialized and rehabilitation institutions may be related to the lack of knowledge of the care demands of this group, as well as to the relevance of care centered on rehabilitation and the specialty instead of the long-term care, one of the features of primary health care.
Highlights
With the change in the epidemiological profile of health problems in early childhood, an increase in the number of children who survive with special healthcare needs (CSHN), that is, who demand care beyond those required by others in this age group, is emerging
The Family Health Strategy (FHS), which is responsible for organizing and coordinating the interaction between all health services, has the prerogative to ensure the principle of comprehensive care[2,3]
In many realities, the organization of health services is defined by intense fragmentation and the current care model does not correspond to changes in the epidemiological profile of the Brazilian population, given the rise of chronic diseases[3]
Summary
With the change in the epidemiological profile of health problems in early childhood, an increase in the number of children who survive with special healthcare needs (CSHN), that is, who demand care beyond those required by others in this age group, is emerging. In many realities, the organization of health services is defined by intense fragmentation and the current care model does not correspond to changes in the epidemiological profile of the Brazilian population, given the rise of chronic diseases[3]. It is in this scenario of disarticulation that CSHN and their families are inserted. The daily struggle faced by these families to ensure the rights of their children, in the face of a fragile and disjointed care network[5]
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