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Information and Empowerment of Families of Children With Cerebral Palsy in Brazil: The Knowledge Translation Role of Nossa Casa Institute

Knowledge translation (KT) is gaining attention in the pediatric rehabilitation field. Nossa Casa Institute is the first organization in Brazil aiming to foster cerebral palsy (CP) awareness and empower families by discussing reliable information. This study aims to build a network where individuals...

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Autores principales: Airoldi, Marina J., Vieira, Beatriz S., Teplicky, Rachel, Chalfun, Deborah, Bonfim, Rafael G. A. S., Mancini, Marisa C., Rosenbaum, Peter, Brandão, Marina B.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9397996/
https://www.ncbi.nlm.nih.gov/pubmed/36188792
http://dx.doi.org/10.3389/fresc.2021.709983
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author Airoldi, Marina J.
Vieira, Beatriz S.
Teplicky, Rachel
Chalfun, Deborah
Bonfim, Rafael G. A. S.
Mancini, Marisa C.
Rosenbaum, Peter
Brandão, Marina B.
author_facet Airoldi, Marina J.
Vieira, Beatriz S.
Teplicky, Rachel
Chalfun, Deborah
Bonfim, Rafael G. A. S.
Mancini, Marisa C.
Rosenbaum, Peter
Brandão, Marina B.
author_sort Airoldi, Marina J.
collection PubMed
description Knowledge translation (KT) is gaining attention in the pediatric rehabilitation field. Nossa Casa Institute is the first organization in Brazil aiming to foster cerebral palsy (CP) awareness and empower families by discussing reliable information. This study aims to build a network where individuals with CP and their families, researchers, health care professionals, and services can communicate and share experiences. In this article, we describe the experience of planning and conducting an educational and interactive online workshop to foster principles of family-centered service (FCS). We used the action cycle from the Knowledge to Action (KTA) framework to describe and ground the proposed activities. In Module 1, “Challenges and barriers to incorporate family-centered principles,” we discussed the historical perspective, main principles, and challenges related to FCS implementation. Module 2, “What is my contribution to the family-centered service?” was aimed to foster strategies to improve the implementation of principles of FCS in the care of children with disabilities. In Module 3, “What can we do together?” the groups presented their ideas and suggestions. This interactive and educational workshop was an opportunity for Nossa Casa Institute to disseminate accessible and reliable information regarding FCS and to empower families to participate actively in the rehabilitation process and advocate for the best provision of care for their children. Future actions of Nossa Casa Institute include the coordination of a national conference to connect families, individuals with CP, healthcare and rehabilitation professionals, and researchers. There is also a need, and opportunity, for formal evaluation of these KT activities.
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spelling pubmed-93979962022-09-29 Information and Empowerment of Families of Children With Cerebral Palsy in Brazil: The Knowledge Translation Role of Nossa Casa Institute Airoldi, Marina J. Vieira, Beatriz S. Teplicky, Rachel Chalfun, Deborah Bonfim, Rafael G. A. S. Mancini, Marisa C. Rosenbaum, Peter Brandão, Marina B. Front Rehabil Sci Rehabilitation Sciences Knowledge translation (KT) is gaining attention in the pediatric rehabilitation field. Nossa Casa Institute is the first organization in Brazil aiming to foster cerebral palsy (CP) awareness and empower families by discussing reliable information. This study aims to build a network where individuals with CP and their families, researchers, health care professionals, and services can communicate and share experiences. In this article, we describe the experience of planning and conducting an educational and interactive online workshop to foster principles of family-centered service (FCS). We used the action cycle from the Knowledge to Action (KTA) framework to describe and ground the proposed activities. In Module 1, “Challenges and barriers to incorporate family-centered principles,” we discussed the historical perspective, main principles, and challenges related to FCS implementation. Module 2, “What is my contribution to the family-centered service?” was aimed to foster strategies to improve the implementation of principles of FCS in the care of children with disabilities. In Module 3, “What can we do together?” the groups presented their ideas and suggestions. This interactive and educational workshop was an opportunity for Nossa Casa Institute to disseminate accessible and reliable information regarding FCS and to empower families to participate actively in the rehabilitation process and advocate for the best provision of care for their children. Future actions of Nossa Casa Institute include the coordination of a national conference to connect families, individuals with CP, healthcare and rehabilitation professionals, and researchers. There is also a need, and opportunity, for formal evaluation of these KT activities. Frontiers Media S.A. 2021-07-19 /pmc/articles/PMC9397996/ /pubmed/36188792 http://dx.doi.org/10.3389/fresc.2021.709983 Text en Copyright © 2021 Airoldi, Vieira, Teplicky, Chalfun, Bonfim, Mancini, Rosenbaum and Brandão. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Rehabilitation Sciences
Airoldi, Marina J.
Vieira, Beatriz S.
Teplicky, Rachel
Chalfun, Deborah
Bonfim, Rafael G. A. S.
Mancini, Marisa C.
Rosenbaum, Peter
Brandão, Marina B.
Information and Empowerment of Families of Children With Cerebral Palsy in Brazil: The Knowledge Translation Role of Nossa Casa Institute
title Information and Empowerment of Families of Children With Cerebral Palsy in Brazil: The Knowledge Translation Role of Nossa Casa Institute
title_full Information and Empowerment of Families of Children With Cerebral Palsy in Brazil: The Knowledge Translation Role of Nossa Casa Institute
title_fullStr Information and Empowerment of Families of Children With Cerebral Palsy in Brazil: The Knowledge Translation Role of Nossa Casa Institute
title_full_unstemmed Information and Empowerment of Families of Children With Cerebral Palsy in Brazil: The Knowledge Translation Role of Nossa Casa Institute
title_short Information and Empowerment of Families of Children With Cerebral Palsy in Brazil: The Knowledge Translation Role of Nossa Casa Institute
title_sort information and empowerment of families of children with cerebral palsy in brazil: the knowledge translation role of nossa casa institute
topic Rehabilitation Sciences
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9397996/
https://www.ncbi.nlm.nih.gov/pubmed/36188792
http://dx.doi.org/10.3389/fresc.2021.709983
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