Fatores ambientais e perfil dos cuidadores de crianças e adolescentes com paralisia cerebral no Brasil: um estudo multicêntrico

Abstract

Introduction: Cerebral Palsy (CP) is the most prevalent neuromotor condition in childhood, and its impacts affect different dimensions of a child’s life and their family. The opportunities for activities and participation of children and adolescents with CP are strongly influenced by environmental factors. Objective: To describe the profile and environmental factors, identifying barriers and facilitators, and to verify whether there is an association between these factors and gross motor and manual function, as well as age group, in children and adolescents with CP in Brazil. Methods: This is a cross-sectional study approved by the Research Ethics Committee (CAAE: 28540620.6.1001.5133), as part of the multicenter longitudinal study “PARTICIPA BRASIL.” The sample was convenience-based, and data collection was conducted remotely and/or in person. The following instruments were used: a contextual factors questionnaire based on the International Classification of Functioning, Disability and Health (ICF); the Gross Motor Function Classification System (family report); and the Manual Ability Classification System. Data analysis was performed using JASP Team (2025) (Version 0.95.2). Results: A total of 472 children and adolescents with CP participated in the study, with a mean age of 6.65 years (±3.78), and 57.6% were male. Most participants were classified as GMFCS levels III–V (65.4%) and MACS levels III–V (54.1%). Among caregivers, 91.5% were mothers, 42.6% had completed high school or had incomplete higher education, and 54.9% were not engaged in paid work. Regarding assistive technology, 61.9% used lower limb orthoses and 42.2% used manual wheelchairs, both predominantly considered facilitators (88.7% and 90.6%, respectively). Private cars were the main mode of transportation (55%). Schools (58%), shopping malls (53.4%), and public places (44.2%) were mostly considered adapted, whereas only 23.4% identified parks as adapted. The Sistema Único de Saúde (SUS) was the main form of access to healthcare (55.5%), and physiotherapy treatment was used by 85.6% of the children and adolescents, being classified as a facilitator by 98.6% of caregivers. Family (83.3%) and friends (73.1%) stood out as the main facilitators, while only 38.6% perceived social attitudes as facilitators. Overall, weak associations were observed between GMFCS, MACS, age group, and environmental factors. Conclusion: There was a predominance of Brazilian children and adolescents with more severe functional impairment. Although health services, family, and school were mostly perceived as facilitators, relevant barriers persist, especially in leisure spaces, transportation, and social attitudes.