Abstract
Objective: to describe the therapeutic itinerary of families of children with special health needs. Methods: this is a qualitative study carried out at the household of 14 families enrolled in primary health care. Results: Participant families reported negative feelings with the discovery of the diagnosis, which intensified with the absence of professional guidance. They faced difficulties of access by the Unified Health System, having to seek the private service to care for their children and fragility regarding their own rights. Conclusion: in the therapeutic itinerary of the families of children with special health needs, they suffer constant pilgrimages through health care networks seeking assistance and resolution.
Highlights
In Brazil, the implementation of child health policies has tried to reduce child mortality rates through comprehensive care and with the purpose of linking the family in this process, deconstructing the disease-centered model(1)
There are children with special health needs, and Brazil they were classified according to the demands of care: development care, which includes those with muscular neuromotor dysfunction, functional and incapacitating limitations; technological care, which refer to children using life-sustaining devices such as gastrostomy, tracheostomy, colostomy, among others; medicine care, those who has continuous use of drugs; children who need adaptive technologies in day-to-day care and activities of daily living; mixed care, where there is a combination of one or more demands, excluding technological care(3)
The question of the study is: what is the path traveled by families of children with special health needs and how are they supported by health care networks? To answer the question, the objective of the study was to describe the therapeutic itinerary of families of children with special health needs
Summary
In Brazil, the implementation of child health policies has tried to reduce child mortality rates through comprehensive care and with the purpose of linking the family in this process, deconstructing the disease-centered model(1). The illness of the child is an unexpected process for any family that many times causes feelings of denial, guilt, but mainly fear, pain and suffering. In this context, there are children with special health needs, and Brazil they were classified according to the demands of care: development care, which includes those with muscular neuromotor dysfunction, functional and incapacitating limitations; technological care, which refer to children using life-sustaining devices such as gastrostomy, tracheostomy, colostomy, among others; medicine care, those who has continuous use of drugs; children who need adaptive technologies in day-to-day care and activities of daily living; mixed care, where there is a combination of one or more demands, excluding technological care(3). An organized primary health care service is essential to coordinate care and to be responsible for the flow of patients, to optimize the reference and counterreferral services(5), which are necessary for the followup of these children
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