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

• Autor(a) principal: Marina Junqueira Airoldi
• Data de Publicação: 2021
• Outros Autores: Beatriz Santos Vieira, Rachel Teplicky, Deborah Chalfun, Rafael Boonfim, Marisa Cotta Mancini, Peter Rosenbaum, Marina de Brito Brandao
• Tipo de documento: Artigo
• Idioma: eng
• Título da fonte: Repositório Institucional da UFMG
• Texto Completo: https://doi.org/10.3389/fresc.2021.709983; http://hdl.handle.net/1843/65212; https://orcid.org/0000-0001-5192-0868
• topic: Knowledge translation; Family-centered; Action cycle; Pediatric rehabilitation; Cerebral palsy; Pediatria; Paralisia Cerebral; Ciência Translacional Biomédica

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.