Perfil de participação na comunidade e ambiente de crianças pequenas brasileiras com Paralisia Cerebral : Recorte do estudo multicêntrico PartiCipa Brasil

Abstract

Introduction: Participation is an important indicator of early childhood health in children with Cerebral Palsy (CP) and should be prioritized in rehabilitation programs. However, young children with CP tend to face restrictions in participating in community activities, which reinforces the need to investigate this outcome in low- and middle-income countries such as Brazil. Objective: To describe community participation and the environmental profile of young Brazilian children with CP, to analyze the correlation between participation domains, environmental factors and the child's GMFCS level, and to suggest an intervention strategy to improve participation. Methods: This study, part of the “PartiCipa Brasil” multicenter project, involved Brazilian children with CP, aged between 2 and 5 years and 11 months. A questionnaire of contextual factors, the Gross Motor Function Classification System (GMFCS) - Family Report was used to classify gross motor function, and the Young Children's Participation and Environment Measure (YC-PEM) was used to assess participation (Frequency, Involvement and Desire for change) and the environment (Supports, Barriers, Aids, Resources and General Environmental Support). The analyses were carried out using Jamovi software (version 2.3.28) with descriptive statistics and Spearman's correlation, adopting p<0.05. In addition, as a second product, a book chapter was written with a clinical case of a 7-year-old child with CP, with an intervention based on the Pathways and Resources for Engagement and Participation (PREP) approach. The Canadian Occupational Therapy Measure (COPM), Participation and Environment Measure for Children and Youth (PEM-CY) and the Therapeutic Goals Scale agreed in partnership with the family (GAS) were used. Results: Of the 541 children with CP followed up by PartiCipa Brasil, 109 answered the YC-PEM and were included in this study, with a mean age of 44.8 months (SD=12.0). There was a predominance of males, spastic CP and GMFCS level V, with children from low-income families. On average, the children participated in the community “once in the last month” and were involved at the “more or less” level, with an emphasis on activities related to “commitments”. A higher level of support was observed compared to the barriers faced, and 49.8% of caregivers expressed a desire for change in participation. Frequency of Participation correlated significantly with the child's GMFCS (r²=-0.240, p=0.011); Involvement with Supports (r²=0.230, p=0.016), Environmental Helpfulness (r²=0.210, p=0.028) and Overall Environmental Support (r²=0.238, p=0.012); and Desire to Change with Supports (r²=-0.274, p=0.003), Barriers (r²=0.340, p=0.001), Environmental Helpfulness (r²=-0.359, p=0.001) and Overall Environmental Support (r²=-0.344, p=0.001). For the book chapter, clinically significant changes were seen in the COPM and GAS with scores above 2 points and 50 points, respectively, and improvement in the Participation and Environment scores on the PEM-CY. Conclusion: This is the first study using PartiCipa Brasil data to describe how young children with CP from different regions of Brazil participate in the community. Understanding participation and environmental factors can support interventions, such as the PREP approach, to improve opportunities for this audience to participate in society.