Factors Associated with Participation Patterns of Young Brazilian Children with Myelomeningocele

To describe participation patterns and identify factors associated with participation of young Brazilian children with myelomeningocele (MMC) in their home, daycare/preschool, and community settings. The participants were parents/caregivers of 70 children with MMC, averaging 26.7 (±17.3) months in age. Participation was measured by the Young Children’s Participation and Environment Measure (YC-PEM) completed by interview. Simple and stepwise multiple linear egression models were used to examine factors associated with participation. On average children participated in home activities a few times a week, community activities once a month to a few times in the last month, and daycare or preschool activities once to a few times in the past four months. Age was associated with participation frequency (<i>R</i>² = 0.32; <i>p</i> &lt; .0001) and number of activities (<i>R</i>² = 0.27; <i>p</i> &lt; .02) in daycare/preschool and in the number of activities in the community (<i>R</i>² = 0.30; <i>p</i> &lt; .0001). Number of environmental facilitators was associated with the desire for change in participation in daycare/preschool (<i>R</i>² = 0.21; <i>p</i> &lt; .04). Mobility performance was associated with children’s level of involvement (<i>R</i>² = 0.10; <i>p</i> = .006) and caregivers’ desire for change in community participation (<i>R</i>² = 0.11; <i>p</i> = .006). Knowledge of participation and factors that influence participation can help in designing interventions to improve participation opportunities for young children with MMC.

本研究旨在描述巴西脊髓脊膜膨出（myelomeningocele, MMC）幼儿在家庭、日托/学前机构及社区环境中的参与模式，并确定影响其参与的相关因素。研究参与者为70名MMC患儿的父母/照顾者，患儿平均年龄为26.7±17.3个月。研究通过访谈方式让参与者完成《幼儿参与与环境测量》（Young Children’s Participation and Environment Measure, YC-PEM），以此评估儿童的参与度。研究采用简单多元线性回归模型及逐步多元线性回归模型，分析与儿童参与度相关的因素。结果显示，儿童平均每周参与家庭活动数次；过去一个月内，社区活动参与频率为1次至数次；过去四个月中，日托或学前机构活动参与频率为1次至数次。年龄与日托/学前机构中的参与频率（R²=0.32，p<0.0001）、活动数量（R²=0.27，p<0.02）及社区活动数量（R²=0.30，p<0.0001）存在关联。环境促进因素的数量与照顾者对日托/学前机构参与情况的改变意愿相关（R²=0.21，p<0.04）。儿童的移动能力表现与自身参与程度（R²=0.10，p=0.006）及照顾者对社区参与情况的改变意愿（R²=0.11，p=0.006）均存在关联。了解MMC幼儿的参与情况及其影响因素，有助于设计针对性干预措施，以增加该群体的参与机会。