Banca de DEFESA: CALINE CRISTINE DE ARAUJO FERREIRA JESUS

Uma banca de DEFESA de MESTRADO foi cadastrada pelo programa.
STUDENT : CALINE CRISTINE DE ARAUJO FERREIRA JESUS
DATE: 30/06/2023
TIME: 14:00
LOCAL: Remoto
TITLE:

Co-construction of an intervention to improve participation in leisure activities of adolescents with cerebral palsy GMFCS IV and V

KEY WORDS:

Adolescents, Cerebral Palsy, Co-design, Intervention development, Participation; Involvement of patients and the public.

PAGES: 85
BIG AREA: Ciências da Saúde
AREA: Fisioterapia e Terapia Ocupacional
SUMMARY:

Introduction: Patient and public involvement (PPI) in research that concerns them is an increasingly common reality in high-income countries. However, tools are needed to facilitate participant engagement, such as the Involvement Matrix (IM). Adolescents with Cerebral Palsy (CP) classified using the Gross Motor Function Classification System (GMFCS) at levels IV and V often face significant restrictions in participating in leisure activities and commonly receive interventions that prioritize outcomes in terms of body function and structure, without incorporating one of the main rehabilitation outcomes, which is participation. Objectives: With the aim of filling this gap, the present study aimed to: 1) Translate the IM into Brazilian Portuguese to facilitate its use and guide collaborative research; and 2) Engage adolescents, their families, and researchers in co-designing an intervention program to promote participation in leisure activities within the community of adolescents with CP at GMFCS levels IV and V, aged between 12 and 17 years. Methods: This is a qualitative study based on a previously published protocol. The first stage aimed to translate the materials of the IM into Brazilian Portuguese. After obtaining authorization from the authors, the translated material underwent a back-translation process. Subsequently, the result was reviewed by the tool's authors, ensuring semantic and content accuracy. In the second stage, different dialogue groups were created for the co-construction of the intervention in collaboration with adolescents with CP at GMFCS levels IV and V, their families, and healthcare professionals (physiotherapists and occupational therapists). The IM was used to guide participant engagement in the research, and the Participation and Environment Measure - Children and Youth (PEM-CY) was used to assess adolescent participation. Individual interviews were conducted to explore participants' perceptions of their experiences throughout the research. Results: The IM translated into Brazilian Portuguese was made available on the official website https://www.kcrutrecht.nl/involvement-matrix/. The second stage involved the participation of five adolescents with CP, their mothers, three physiotherapists, and two occupational therapists. During the preparation phase, dialogue groups were formed to discuss the concept of participation, the results of the PEM-CY, and the components of an intervention to promote participation. Subsequently, the participants co-designed the intervention, considering the necessary ingredients, guided by the Template for Intervention Description and Replication (TIDieR). The final product was presented to an external group not involved in the research for validation. The interviews revealed satisfaction with the intervention, as well as satisfaction with participating in the research. Conclusions: The various materials of the IM are adequately translated and freely available for use in Brazil. The engagement of adolescents and their families in the research brought benefits, allowing their voices to be heard in the construction of an intervention to promote participation.

COMMITTEE MEMBERS:
Presidente - 2218795 - EGMAR LONGO HULL
Interno - 2218684 - MARCELO CARDOSO DE SOUZA
Externa ao Programa - 3180823 - ISABELLY CRISTINA RODRIGUES REGALADO MOURA - UFRNExterno à Instituição - RAFAEL COELHO MAGALHÃES - UFMG