Functional status of children with myelomeningocele and the burden of their informal caregivers: a cross-sectional study

OBJECTIVE: To evaluate the functional performance of children with myelomeningocele undergoing rehabilitation and its association with the perceived burden of their informal caregivers. METHODS: A cross-sectional analytical study was conducted at a rehabilitation center with eight child-caregiver dyads representing the entire population of children with myelomeningocele receiving care at the institution. Child functionality was assessed using the Pediatric Evaluation of Disability Inventory - Computer Adaptive Test, and caregiver burden was measured using the Informal Caregiver Burden Assessment Questionnaire. Sociodemographic and clinical data were also collected. Descriptive statistics and Pearson correlation analyses were performed between the domains of both instruments. RESULTS: Caregivers were all mothers, most with low household income and full-time caregiving responsibilities. Most children exhibited functional performance below age expectations in the domains of Mobility, Daily Activities, and Social and Cognitive Skills. Only three participants achieved normative percentiles above 50 in more than one domain. The lowest continuous scores were observed in Responsibility, followed by Daily Activities and Mobility. Financial Burden and Family Support showed the highest mean caregiver burden scores. Strong negative correlations were identified between functional performance and subjective burden domains, indicating that lower functionality was associated with greater emotional burden, stronger reactions to caregiving demands, and lower perceptions of efficacy and control. CONCLUSIONS: Functional deficits in children with myelomeningocele are associated with increased emotional and practical burden among informal caregivers. These findings highlight the importance of rehabilitation strategies aimed at improving children's functional independence while also incorporating caregiver support as an essential component of care.