Independence in self-care activities in children with myelomeningocele: exploring factors based on the International Classification of Function model.

PURPOSE: To investigate the relationship between disease factors, body functions and structures, activities, personal and environmental factors with independence in self-care activities in children with myelomeningocele (MMC), utilizing the International Classification of Function model.

METHOD: 113 children with MMC, aged 3-18 years were assessed during an annual MMC-clinic visit. Data on the personal and environmental factors, disease factors, hand function, mobility, visual perception, cognition, and communication were assessed in relation to the Pediatric Evaluation of Disability Inventory (PEDI) self-care domain.

RESULTS: The mean PEDI caregiver assistance score was 22.1 (ranged between <10 and 62) well below the norms. The most significant determinant of dependence in self-care activities was the presence of hydrocephalus, a child with hydrocephalus scored a mean of 9.2 points less on the PEDI caregiver scale (p = 0.02). By using a linear regression, the most significant factors associated with the PEDI scores among children with hydrocephalus were the age of the child, function of the non-dominant hand, ambulation, and cognitive function.

CONCLUSION: In children with MMC the presence of hydrocephalus appears to be more significantly associated with functional independence than the neurological level. The International Classification of Function model provides an in-depth multidisciplinary model that facilitates in investigating independence in self-care activities in children with MMC. It is important to take personal factors and various functional impairments into account when working with these children to promote independence. Implications for Rehabilitation When working with children with myelomeningocele on independence in daily living activities, it is necessary that health professionals demonstrate a holistic view of the child and his/her disability. Health professionals should take into account information on all factors of the International Classification of Function, in order to help the children, achieve maximal independence. It is important for health professionals to consider presence or lack of hydrocephalus when working with children with myelomeningocele to achieve functional gains. Improving upper extremity function and cognitive ability in children with myelomeningocele may help promote independence in activities of daily living. It is necessary for health professionals to continue to work with children with myelomeningocele on maximizing independence as they get older, for it is possible for them to achieve independence at a later age. While this study did not explore participation, this is an essential part of the International Classification of Function and is generally related to function. Participation allows a child to be involved in life situations, contributes to life satisfaction and prepares children for critical adult roles. It is therefore important to assess and monitor this measure. Further studies should examine associations between independence in self-care activities and participation.