Cross-cultural adaptation of the Patient and Public Engagement Evaluation Tool and perceptions of young people with Cerebral Palsy about their involvement in research.

• Grant number: 24/19934-8
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: March 01, 2025
• End date: December 31, 2025
• Field of knowledge: Health Sciences - Physiotherapy and Occupational Therapy
• Principal Investigator: Ana Carolina de Campos
• Grantee: Carlos Caseri
• Host Institution: Centro de Ciências Biológicas e da Saúde (CCBS). Universidade Federal de São Carlos (UFSCAR). São Carlos , SP, Brazil

Abstract

Introduction: In recent years, there has been significant encouragement for increased involvement of citizens and patients in the development of academic research, aiming to ensure that the perspectives and needs of stakeholders are adequately represented. In Brazil, studies with participatory methodology and Patient and Public Involvement (PPI) are still in their early stages, and the processes employed have not yet been systematically evaluated.Objectives: To carry out the cross-cultural adaptation of the Patient and Public Engagement Evaluation Tool (PPEET) participant module to Brazilian Portuguese and describe the experiences of a group of young people with Cerebral Palsy (CP) involved in participatory research.Methodology: This is an observational methodological and qualitative study. For the cross-cultural adaptation of the PPEET, the following steps will be undertaken: evaluation of the previously translated version of the PPEET by a committee of 8 specialists; testing of the pre-final version with 13 representatives of the target audience; and verification and approval of the final Portuguese version by the instrument's authors. To explore engagement perspectives, 13 young people with CP with experience in participatory research will be invited to participate in a semi-structured interview. This project will be submitted to the Research Ethics Committee (CEP) for approval. Participants over 18 years of age must sign the Informed Consent Form (ICF), while participants under 18 will sign the Free and Informed Assent Form (TALE), along with the ICF signed by their guardians.Expected Results: The availability of the PPEET in Brazilian Portuguese will allow for a structured evaluation of research involving PPI in Brazil. This study will also provide pioneering data on the perceptions of young people with CP regarding PPI methodology, which could promote the dissemination of this methodology in future research.