Ana Carolina de Campos

Objective This study aimed to translate the About My Child questionnaire into Brazilian Portuguese and evaluate its psychometric properties. Standardized instruments that assess health and everyday life impacts in children with neurological or developmental disabilities are essential for clinical and research settings. Method The translation process followed the stages of translation, back-translation, semantic analysis, and content analysis. A pre-test was conducted with calculation of the content validity index, resulting in the final version. The psychometric properties were analyzed using the agreement index for semantic and content analyses (>80% agreement). Internal consistency and test-retest reliability were examined for the “concerns” and “perceived impact” domains. Results After adjustments to specific expressions, all items reached the expected agreement level (100%). The About My Child questionnaire showed satisfactory internal consistency for both domains (“concerns”: α = 0.888; “perceived impact”: α = 0.913). Test-retest reliability showed Cohen’s kappa coefficients for the “concerns” domain ranging from 0.19 to 0.4750, with agreement between 24.44% and 76.12%. Conclusion Further studies with more diverse samples and additional validation procedures are recommended to strengthen the understanding of the instrument’s psychometric properties. Nevertheless, the findings indicate that the Brazilian version of the About My Child has adequate internal consistency and preliminary evidence of test–retest reliability. These results support the feasibility of using the Brazilian version of the About My Child in clinical and research settings in Brazil.

Aim: To describe autonomy levels and explore factors associated with autonomy in participation of Brazilian young people with cerebral palsy (CP). Method: This cross‐sectional study included the following International Classification of Functioning, Disability and Health‐informed variables: body functions—cognition; personal factors—age, sex, education, perceived self‐efficacy; environmental factors—family income, parents' education; activity—gross motor, manual, and communication classifications; participation—autonomy (Rotterdam Transition Profile). Analysis of variance and linear multiple regression models were fitted. Results: A total of 114 young people with CP participated (mean age 25 years 11 months [SD 11 years], 67 females). Transitional or complete autonomy in participation has been demonstrated in most life areas. Romantic relationships and sexuality were the areas with the lowest autonomy levels, while rehabilitation and leisure showed high autonomy levels. Participant's age ( β = 0.9187; p < 0.001; 95% confidence interval: 3.3–5.8) and perceived self‐efficacy ( β = 1.6174; p = 0.044; 95% confidence interval: 0.002–2.1) were associated with autonomy level ( R ² _adj = 0.522). Autonomy levels tended to increase with higher self‐efficacy and age. Interpretation: Personal factors appear to play a central role in the acquisition of autonomy in participation during transition to adulthood of young people with CP. More attention to personal factors and strategies is needed to support personal development favouring the acquisition of autonomy to participate in different life areas.

Background: Children with developmental coordination disorder (DCD) may have participation restrictions; however, there is little information about the specific characteristics of the participation of children with this condition. Given the relevance of participation as an outcome of physiotherapeutic interventions, the objective of this study was to provide a broad review of studies on participation in children with DCD.Methods: We mapped the literature using a scoping review, through the MEDLINE/PubMed, Scopus, CINAHL and Web of Science databases to identify studies on participation in children with DCD published between 2001 and 2021. The studies were selected by two independent researchers considering the following criteria: (1) studies that evaluated participation and/or constructs related to participation in children with DCD and (2) children aged 5 to 17 years. Data were extracted independently using standardised forms and synthesised after consensus. Study quality was assessed using the Mixed Methods Appraisal Tool (MMAT).Results: A total of 2444 studies were initially found. Fourteen studies met the inclusion criteria, all from high‐income countries. The studies included children with a mean age of 9.7 years, and most used appropriate diagnostic criteria and instruments to assess participation with adequate measurement properties. In general, children with DCD have lower levels of participation compared to children with typical development, particularly in physical activities and social participation, with lower engagement in sports teams, leisure and low parental satisfaction.Conclusions: Although findings of decreased participation in children with DCD were consistent, there are gaps in the literature regarding the understanding of home and school participation. Studies that identify contextual determinants of participation are also needed so participation can be effectively promoted.

The Mobility Intensive Training (Mob-IT) protocol is an innovative intervention focused on motor learning to improve the mobility of children with cerebral palsy (CP). The objective was to describe the feasibility and intervention fidelity of Mob-IT. A single-subject experimental study was conducted with four children with CP, a median age of 11 (7–13) years, and a Gross Motor Function Classification System I–III. The Mob-IT included 24 h of practice of mobility goals, delivered three times a week in 2 h sessions over four weeks. Feasibility was assessed using the Qualitative Feedback Questionnaire (QFQ), evaluating adherence, acceptability, adverse effects, the clarity of procedures, and intervention time. The Canadian Occupational Performance Measure (COPM) was used to assess participant and caregiver satisfaction. Fidelity was measured by the type of feedback provided (intrinsic vs. extrinsic), task challenge level, and intervention volume. Participants reported good acceptance, few adverse effects, and satisfaction with the outcomes. The intervention adhered to the proposed principles, with a focus on extrinsic feedback and tasks showing progression over time. Time was well spent, being 78% focused on activities and using mostly extrinsic-focused feedback. The Mob-IT protocol was considered feasible and faithful to its principles. As this is a feasibility study, the results indicate the need to expand the intervention to a larger, randomized study.

Objective: The objective of this study was to explore community participation and environmental profiles of young Brazilian children with CP and analyze the association between participation domains, environmental factors, and the child’s GMFCS level. Methods: Cross-sectional study derived from the “PartiCipa Brasil” project, involving 109 Brazilian children with CP, with a mean age of 44.8 months (SD=12.0). The sociodemographic questionnaire characterized the sample, the Gross Motor Function Classification System (GMFCS) — Family Report classified the functionality, and the Young Children’s Participation and Environment Measure (YC-PEM) assessed participation and environmental factors in the community. The data were analyzed using descriptive statistics and Spearman correlation to investigate relationships between the domains of participation, environmental factors, and the GMFCS, adopting p<0.05 as significance. Results: Male predominance, spastic CP, and GMFCS level V, with children from low-income families. Children participated in the community “few times in the last month” and were involved at a “between 3 and 5” level, with an emphasis on activities related to routine appointments. There was a higher level of support compared to the barriers faced, and 49.8% of caregivers expressed a desire to change their participation. The child’s environmental factors and their GMFCS level correlated with their participation. Conclusions: This is the first study using data from PartiCipa Brasil that describes how young children with CP from different regions of Brazil participate in the community. Understanding participation and environmental factors can support the creation of interventions to improve opportunities for this public to participate in society.

Os objetivos deste artigo foram caracterizar a participação na comunidade de um grupo de adultos com paralisia cerebral e investigar quais fatores ambientais estariam associados à participação na comunidade desses indivíduos. Trata-se de um estudo quantitativo, exploratório, com a participação de 30 adultos com paralisia cerebral. A Medida Canadense de Desempenho Ocupacional (COPM) foi utilizada para caracterizar o desempenho e a satisfação na participação comunitária. Foi criado um índice para investigar o resultado da participação comunitária, e a Measure of the Quality of the Environment (MQE-Brasil) foi utilizada para verificar os fatores ambientais. Foram realizadas análise descritiva e regressão linear multivariada (p < 0,05). Os resultados apontam que os participantes (n = 27; 97%) relataram problemas ocupacionais relacionados à participação social em sair com amigos/familiares. Esse problema ocupacional foi classificado como importante; seu desempenho (mediana 8; intervalo interquartil 1-10) e satisfação (mediana: 10; intervalo interquartil: 1-10) foram avaliados. Em se tratando dos facilitadores ambientais, o apoio das pessoas ao seu redor, comunicação eletrônica e dispositivos e adaptações de assistência explicaram 68% (p < 0,01) a participação. Conclui-se que os participantes consideram o seu desempenho adequado e estão satisfeitos com a sua participação comunitária, destacando mais facilitadores ambientais do que barreiras. O apoio das pessoas próximas, dispositivos de assistência e comunicação eletrônica precisam ser levados em consideração por profissionais da saúde e educação que atuam junto a essa população.

Introduction Koolen-de Vries Syndrome (KdVS) is a rare syndrome characterized by motor development delay, hypotonia, intellectual disability, language delay, and distinctive facial features.