Tradução do conhecimento e combate à desinformação sobre paralisia cerebral no Brasil: da investigação das lacunas à criação de estratégias digitais

Abstract

Despite advances in knowledge about best practices in cerebral palsy (CP) rehabilitation, information sources produced in Brazil, such as videos and scientific articles, still lack reliability and focus excessively on remediation of disabilities, with little emphasis on aspects such as participation and contextual factors. The production of audiovisual resources based on scientific evidence emerges as a promising strategy to strengthen knowledge translation (KT) initiatives and combat misinformation about CP in the country. This thesis, composed of four studies, aimed to: (1) investigate the published scientific evidence on the physical therapy management of CP in Brazil; (2) examine the clinical practices adopted by Brazilian physical therapists in the care of children and adolescents with CP; (3) analyze the characteristics and reliability of CP videos available on YouTube in Brazilian Portuguese; and (4) implement and develop informational materials with a Patient and Public Engagement (PPE) approach, in addition to evaluating the engagement of these contents on social media and their feasibility of reproducibility. In study 1, a scoping review revealed growth in scientific production on CP in Brazil, but with evidence of low methodological quality and a focus still solely on reducing disabilities and activity limitations with a focus on capacity. Study 2, the first national survey on the practice of pediatric physical therapists, showed that professionals seek information from scientific databases and social media, but still need to expand the focus of the International Classification of Functioning, Disability, and Health (ICF) and implement more evidence-based interventions, especially including participation and contextual factors. Study 3 found that informative videos about CP on YouTube have moderate reliability and good overall quality, but rarely discuss and provide scientific evidence and its sources. Study 4 demonstrated that the co-production of videos and comics with the EPP group is an approach with potential for disseminating reliable information based on scientific evidence, accessible, and culturally adapted to the Brazilian context through the EPP approach. Furthermore, despite the high cost of producing audiovisual resources, it demonstrated that social media are viable and powerful tools for expanding reach and engagement in healthcare. Thus, this thesis contributes to more inclusive rehabilitation practices and to more ethical, participatory, and transformative scientific communication, aligned with the real needs of Brazilian families and with the potential to promote equity and social impact.