Dissemin is shutting down on January 1st, 2025

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Universidade Federal do Rio de Janeiro, Escola Anna Nery, 1(23), 2019

DOI: 10.1590/2177-9465-ean-2018-0127

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

This paper is made freely available by the publisher.
This paper is made freely available by the publisher.

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Abstract

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.