Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?

Abstract

Purpose: This study aims to evaluate the association between the functional independence of children after postnatal spinal dysraphism correction and informal caregivers' burden.

Design and methods: This is a cross-sectional study conducted in a child neurosurgery clinic at a University hospital. We included informal caregivers of children between six months and seven-and-a-half years old who were operated on for spinal dysraphism correction due to myelomeningocele. Functional independence was assessed using the Pediatric Evaluation of Disability Inventory (PEDI). Caregivers' burden was assessed through the Caregiver Burden Scale (CBS).

Results: Twenty-six caregivers were assessed, all mothers, aged 18-42years. Five provided child care and engaged in paid work. Regarding functional independence, 23.1% of the children were classified as needing supervision, 23.1% moderate assistance, 42.3% maximal assistance, and 11.5% total assistance. Median value for the overall CBS was 27.0 (22.0-53.0). The mean global CBS score was 1.42 and the mean PEDI score was 1.95. Correlations between PEDI and CBS scores were very close to zero.

Conclusions: We found no association between the functional independence of children with myelomeningocele from 0 to 7years old and the burden of informal caregivers.

Practice implications: The effect of functional independence of children with myelomeningocele may be balanced by the caregivers' resilience so that caregivers' burden is not dependent upon the child's independence.

Keywords: Caregivers' burden; Functional independence; Myelomeningocele.