Fatores associados a padrões de participação de crianças com mielomeningocele na primeira infância

Abstract

Myelomeningocele (MMC) is the most common malformation of spina bifida, characterized by strength deficit, loss of sensitivity below the affected spinal level, bowel and bladder neurogenic bladder, and hydrocephalus. This condition can lead to limitations in activities and restrictions on young children's participation. The objective of this study was to describe participation patterns and identify factors associated with attendance, number of activities, involvement, and desire to change of participation in Brazilian children aged 0 to 5 years with MMC, at home, in preschool and community. This cross-sectional observational study included children diagnosed with MMC, aged 6 months to 5 years. Dependent variables were attendance, the number of activities, involvement, and the desire to changes in participation across home, preschool, and community, as measured by The Young Children's Participation Environment Measure (YC-PEM). Independent variables: neurological level, MMC-related impairments, age, mobility performance, environmental facilitators, environmental barriers, and the use of assistive technology equipment. To establish associations between dependent and independent variables, Spearman's correlation tests were employed, followed by a subsequent using simple linear regression analysis. Additionally, stepwise multiple linear regression models were applied to confirm associations between variables, with a significance level at α=0.05. The study included 70 children, with an average age of 26.73 (±17.28) months. Children exhibited higher participation attendance (6.11±0.38), engaged in a greater number of activities (68.35±29.22), and displayed more involvement (4.34±0.55) in activities conducted within their home. However, participation in preschool settings was less frequent (1.64±2.65). A strong desire for changes in participation was reported in all environments, with the greatest observed in the community (25.07±19.73) and preschool (79.11±29.20). Age as the primary factor explaining the variability in participation attendance (R2=0.32; p<0.0001) and the number of activities (R2=0.27; p<0.02) in preschool and the number of activities (R2=0.30; p<0.0001) in the community. The presence of environmental facilitators explained the variability in the desire for change in participation (R2=0.21; p<0.04) in preschool, while mobility performance was the key factor explaining the variability in involvement (R2=0.10; p=0.006) and the desire to change participation (R2=0.11; p=0.006) in the community. These findings contribute to a better understanding of participation patterns among Brazilian early with MMC in early childhood, both at home, in preschool and community environments. This insight can assist healthcare professionals in planning interventions that address the participation needs of families with children diagnosed with MMC. Understanding these participation patterns early on enables the implementation of effective strategies over time.