Adaptação transcultural do instrumento Public and Patient Engagement Evaluation Tool e percepções de jovens com Paralisia Cerebral sobre seu envolvimento em pesquisa

Abstract

Introduction: In recent years, there has been significant encouragement for greater public and patient involvement in the development of academic research, aiming to ensure that the perspectives and needs of the target audience are duly represented. In Brazil, studies employing participatory methodology and Patient and Public Involvement (PPI) are in their early stages, and the processes used have not yet been systematically evaluated. Objectives: To conduct a cross-cultural adaptation of the Public and Patient Engagement Evaluation Tool (PPEET)—specifically the participant questionnaire—into Brazilian Portuguese, and to describe the experiences of a group of young people with Cerebral Palsy (CP) involved in participatory research. Methodology: An observational study with a methodological and qualitative approach. The cross-cultural adaptation of the PPEET involved the following stages: a) evaluation of the previously translated version of the PPEET by a committee of eight experts; b) testing of the pre-final version with three representatives of the target audience; and c) verification and approval of the final Portuguese version by the instrument's authors. To explore perspectives on involvement, nine young people with CP who had experience with participatory research were invited; two of them participated in formulating the five questions addressing this objective via a semi-structured interview. Results: The cross-cultural adaptation of the PPEET resulted in semantic adjustments—regarding comprehensibility, scope, and relevance—to 12 items (7 from Module A and 5 from Module B) by the expert committee; these adjustments received official approval from the instrument's original authors. During the testing of the pre-final version with three representatives of the target audience, 87.75% of the questions were considered entirely clear. In the qualitative phase, 100% of the young people with CP reported positive perceptions regarding their involvement in participatory research, highlighting feelings of personal empowerment, social and professional impacts, and an understanding of scientific research. Participants also emphasized the importance of non-monetary returns based on social visibility, respect, and access to study results in plain language. Conclusion: The adapted version of the PPEET was deemed suitable for use with the Brazilian population. The findings regarding the perceptions of young adults with CP on participatory research provide relevant insights into how the PPI (Patient and Public Involvement) methodology should be implemented alongside participatory methodology tools in Brazil.