Looking beyond Body Structure and Function: ICF Foci and Who Is Being Assessed in Research about Adolescents and Young Adults with Cerebral Palsy-A Scoping Review.

PURPOSE: The purpose of this study is to summarize the ICF foci, looking beyond body structures and function, and to analyze who has been assessed in research about adolescents and young adults (AYAs) with CP in the phase of transition to adulthood. METHOD: Medline, EMBASE, PsycINFO, and CINAHL databases were searched using terms related to cerebral palsy, adolescents/young adults, health development, participation, and independence. Studies including youth with CP (13-30 years old) published in English from 2014 to 2021 were considered. The methods of assessment reported in the included studies were used to identify the ICF foci and who was assessed. RESULTS: In this study, 86 studies were reviewed. The main ICF foci are activity and participation (51% of the studies), personal factors (23%), ICF not covered (14%), ICF not defined (9%), with environmental factors being the least focused ICF component (3%). Most studies assessed AYAs directly (49% of studies). CONCLUSIONS: Activity- and participation-related constructs are the leading research focus of studies, and more attention is needed concerning environmental factors. AYAs are the main source of information, and the perspectives of other key figures are also being valued. To bridge the gap between child and adult health care, a broader view of health development and approaches to explore AYA developmental issues must be taken.

Cross-cultural adaptation of the Rotterdam Transition Profile to Brazilian Portuguese: measuring autonomy in participation of Brazilian youth with cerebral palsy.

BACKGROUND: Autonomy in participation of young adults with cerebral palsy (CP) is not well understood due to the lack of appropriate instruments, especially for the Brazilian population. The Rotterdam Transition Profile (RTP) categorizes autonomy in Participation (education, employment, finances, housing, leisure, intimate relationships, sexuality, transportation) and Health Services (care demands, services and aids, and rehabilitation services) domains. OBJECTIVES: To cross-culturally adapt the RTP for use in Brazil, and to describe the levels of autonomy in participation and associated factors of Brazilian youth with CP. METHODS: RTP was translated and content validity was investigated through an expert panel (n = 4 researchers and n = 4 clinicians); 30 adolescents and young adults with CP provided data for construct validity and internal consistency analysis. To analyze influencing factors, 56 youth with CP, mean age 25 years (SD = 6.9 years), with good cognitive level remotely responded to the RTP, sociodemographic information, and functional classifications (gross motor, manual ability). RESULTS: Following translation, content and construct validity were established, with changes made to improve the clarity of items. Cronbach's alpha (0.82) was considered good and test-reliability was fair to good for most items. High levels of autonomy were found in the areas of Leisure and Rehabilitation, with the lowest proportion of participants with autonomy in Housing, Intimate Relationships, and Finances. Autonomy in participation was associated with age, gross motor and manual ability classifications, and with context-related factors. CONCLUSION: The Brazilian Portuguese version of the RTP was considered valid and reliable. Findings will support transition planning for young people with CP.

Translation of the Involvement Matrix tool into Brazilian Portuguese / Tradução da ferramenta Involvement Matrix para o português brasileiro

Abstract Introduction Patient and public involvement has numerous benefits for research; however, there are challenges to its implementation, such as the lack of tools to guide participant engagement in research. The Involvement Matrix (IM) is a tool that facilitates discussion about the role that participants play in research projects, promoting more active public involvement. Objective To translate IM materials into Brazilian Portuguese in order to facilitate their use and guide researchers. Methods Authorization to translate the original material into Brazilian Portuguese was obtained from the authors. Next, the translated material underwent backtranslation. The resulting version was verified by the original IM authors, ensuring semantic and content accuracy. Results The Involvement Matrix (IM) was translated into Portuguese and then backtranslated into English. The researchers discussed the translated version with the IM authors, with minimal adjustments needed in the backtranslation, and no changes made to the Portuguese version. After the approval of the final Brazilian Portuguese version, the translated tools were made available, including a Practical Guide, a Word Version, a Checklist, a Fact Sheet, an Overview with Examples, and an Animated Video with Brazilian Portuguese subtitles. Conclusion The various IM materials are adequately translated and freely available for use in Brazil. It is a valuable tool to guide public and patient involvement in research.

Resumo Introdução O envolvimento do paciente e do público traz diversos benefícios para a pesquisa, no entanto, existem desafios para sua implementação, como a falta de ferramentas que orientem o engajamento dos participantes em pesquisas que os envolvem. A Involvement Matrix (IM) é uma ferramenta que facilita o diálogo sobre o papel que o participante da pesquisa deseja desempenhar em projetos de pesquisas pro-movendo um envolvimento mais ativo desse público. Objetivo Traduzir os materiais da IM para o português brasileiro, a fim de disponibilizar seu uso no Brasil e ori-entar pesquisadores. Métodos Solicitou-se autorização aos autores do instrumento original para traduzi-lo para o português brasileiro. Em seguida, o material traduzido passou por um processo de retrotradução. O resultado foi verificado pelos autores da IM, garantindo a precisão semântica e de conteúdo. Resultados A Matriz de Envolvimento (ME) foi traduzida para o português e retrotraduzida ao inglês. Posteriormente, os pesquisadores da versão brasileira realizaram uma reunião com os autores da ME para esclarecer dúvi-das, havendo a necessidade de mínimos ajustes na retrotradução, sem mudanças da versão em português. Após a aprovação da versão final em português brasi-leiro, foram disponibilizadas as ferramentas traduzidas: um Guia Prático, uma Versão em Word, uma Lista de Verificação, uma Ficha Técnica, uma Visão Geral com Exemplos e um Vídeo Animado legendado em português brasileiro. Conclusão Os diversos materiais da ME estão adequadamente traduzidos e disponíveis gratuitamente para uso no Brasil. Trata-se de uma ferramenta valiosa para guiar o envolvimento do público e do paciente em pesquisas.

Co-Design of an Intervention to Increase the Participation in Leisure Activities Including Adolescents with Cerebral Palsy with GMFCS Levels IV and V: A Study Protocol.

The participation of adolescents with cerebral palsy (CP) within the community is reduced compared to their peers and is a barrier to their socialization, self-determination and quality of life. Patient and Public Involvement (PPI) is a key strategy for successful interventions, especially when involvement of the stakeholders takes place at all stages of the research. Co-design can be crucial for success as researchers, patients with CP and their families work together to bring the necessary elements to the interventions to be designed. The objectives will be: (1) To co-design an intervention aimed at improving the participation of adolescents with significant motor disabilities within the community in partnership with adolescents with CP, families and rehabilitation professionals. (2) To assess the feasibility of the co-design process in partnership with interested parties. The study will be based on Participatory Action Research (PAR) and will be held in Spain and Brazil. In both countries, the study will be carried out remotely with nine adolescents aged 12 to 17 years with CP, Gross Motor Function Classification System (GMFCS) levels IV-V, their families and six health professionals (physiotherapists and occupational therapists). Different dialogue groups will be created to involve adolescents, families and health professionals to the research's project. To manage their involvement in the co-design process, the Involvement Matrix (IM) will be used, and according to the IM phases, four steps will be included in the research: (1) Preparation; (2) Co-design; (3) Analysis: results of the intervention protocol and the study's feasibility and (4) Dissemination of results. Partnering with the public to design an intervention to improve participation can bring better results compared to protocols designed only by health professionals. In addition, it will allow for knowing the needs of adolescents with CP in terms of participation within the community. The study will also explore which roles were chosen by all participants and how they felt while actively participating in the process of co-designing an intervention protocol and their own perspectives on the use of the involvement matrix.

Lower Limb Sensorimotor Training (LoSenseT) for Children and Adolescents with Cerebral Palsy: A Brief Report of a Feasibility Randomized Protocol.

Motor disorders in cerebral palsy (CP) are often accompanied by disturbances of sensation and impaired somatosensory functions have been reported in individuals with CP. To test the feasibility of a sensorimotor training protocol for lower limbs in children and adolescents with unilateral and bilateral CP, and to analyze the preliminary effects of this training on sensory and motor variables. This is a single-blind, prospective phase I feasibility randomized protocol. A total of twenty participants with uni or bilateral cerebral palsy, GMFCS level I-III, ages 5 to 20 years will be recruited. The LoSenseT protocol is composed of tactile and proprioceptive activities in a child-friendly format. An original qualitative feedback questionnaire was developed to assess the protocol feasibility. Additionally, proprioception, tactile discrimination, postural stability, and gait parameters will be assessed. The LoSenseT protocol can support the implementation of interventions targeting lower limbs somatosensory impairments in individuals with CP.