Developmental medicine and child neurology · 2026
Public involvement in the Brazilian Cerebral Palsy Register: An exploratory, sequential, mixed-methods study.
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da Silva Luana Cristina, Kerr Claire, Jahan Israt, Pinho Raphael Fagundes Figueira, Silveira Aline Lincoln, Badawi Nádia, Khandaker Gulam, Pauletti Gabriela Lorençoni, Longo Egmar, Ruiz Brunner Mercedes, Chagas Paula Silva de Carvalho, Leite Hércules Ribeiro
Аннотация
AIM: To describe the implementation of a public involvement strategy based on the UK Standards for Public Involvement in Research within the Brazilian Cerebral Palsy Register (BrCPR).
METHOD: We conducted a participatory, exploratory, sequential, mixed-methods study. Eleven partners (five adults with cerebral palsy and six mothers) from different Brazilian states participated in a four-phase online process: partner integration; knowledge building; exploring public involvement standards and identifying barriers and facilitators; and action plan development and co-creation of an implementation process of a public involvement group.
RESULTS: Partners selected WhatsApp as their primary communication method and were satisfied with meeting the dynamics and content, except meeting duration (1 hour 30 minutes). Reported barriers included language inaccessibility, researcher attitudes, limited family empowerment, time constraints, and lack of researcher flexibility. Facilitators included researcher flexibility, varied knowledge-sharing formats, plain language use, qualitative impact measures, governance council creation, and revised public involvement implementation steps. Partners proposed a seventh standard: continuous review (of standards, co-responsibility, and research aspects). A 26-action implementation plan and a 6-stage public involvement implementation model for cerebral palsy registries were co-created.
INTERPRETATION: The UK Standards for Public Involvement in Research proved an adequate guide for the BrCPR public involvement group. Identified barriers and facilitators guided group actions, leading to a public involvement implementation process grounded in partners' needs and perspectives.
METHOD: We conducted a participatory, exploratory, sequential, mixed-methods study. Eleven partners (five adults with cerebral palsy and six mothers) from different Brazilian states participated in a four-phase online process: partner integration; knowledge building; exploring public involvement standards and identifying barriers and facilitators; and action plan development and co-creation of an implementation process of a public involvement group.
RESULTS: Partners selected WhatsApp as their primary communication method and were satisfied with meeting the dynamics and content, except meeting duration (1 hour 30 minutes). Reported barriers included language inaccessibility, researcher attitudes, limited family empowerment, time constraints, and lack of researcher flexibility. Facilitators included researcher flexibility, varied knowledge-sharing formats, plain language use, qualitative impact measures, governance council creation, and revised public involvement implementation steps. Partners proposed a seventh standard: continuous review (of standards, co-responsibility, and research aspects). A 26-action implementation plan and a 6-stage public involvement implementation model for cerebral palsy registries were co-created.
INTERPRETATION: The UK Standards for Public Involvement in Research proved an adequate guide for the BrCPR public involvement group. Identified barriers and facilitators guided group actions, leading to a public involvement implementation process grounded in partners' needs and perspectives.