Challenges of family caregivers of children with special needs of multiple, complex and continuing care at home

AUTOR(ES)

Dias, Beatriz Caroline

FONTE

Esc. Anna Nery

DATA DE PUBLICAÇÃO

24/01/2019

RESUMO

RESUMO Objetivo: Descrever os desafios dos cuidadores familiares de crianças com necessidades especiais de cuidados múltiplos, complexos e contínuos em domicílio. Método: Estudo qualitativo fundamentado no referencial teórico do Cuidado Centrado no Paciente e na Família. Entrevistaram-se 11 cuidadores familiares de 13 crianças matriculadas em uma escola especial de Maringá (PR), Brasil, sendo os dados submetidos à análise de conteúdo modalidade temática. Resultados: Os principais desafios identificados envolvem despreparo para o cuidado domiciliar, a dificuldade de acesso e acompanhamento nos serviços de Atenção Primária à Saúde e a dificuldade de inclusão da criança no convívio social. Entretanto, os cuidadores reagem positivamente frente a estas adversidades. Conclusões e implicações para a prática: Os enfermeiros carecem de formação que lhes permita transcender o cuidado técnico hospitalar e desenvolver uma prática pautada no cuidado centrado na família, considerando esta como protagonista, incluindo-a no processo em prol da qualidade de vida dessas crianças.ABSTRACT Objective: To describe the challenges of family caregivers of children with special needs of multiple, complex and continuing care at home. Methods: Qualitative study based on the theoretical framework of the Patient and Family-Centerd Care (PFCC). We interviewed eleven family caregivers from 13 children enrolled in a special school in the Brazilian city of Maringá (PR). The data were subject to content analysis, thematic modality. Results: The main challenges identified are the lack of preparation for home care, the difficulty of access and follow-up in Primary Health Care services, and the difficulty of including the child in social interaction. However, caregivers react positively to these adversities. Conclusions and implications for practice: The nurses need the necessary training to transcend hospital technical care and to develop a care practice based on family-centerd care, considering this as a protagonist, including it in the process for the quality of life of these children.

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