Aim: Using the World Health Organization International Classification of Functioning, Disability and Health (ICF), the aim of this study was to identify effective strategies for managing urinary and bowel complications resulting from spina bifida. Method: Charts of 210 children between 4- and 13-years-old with spina bifida were reviewed to quantify medical interventions and continence status. Standardized quality of life (QOL) questionnaires were administered to a subset of participants; child and parent interviews were carried out to examine the experience of living with bowel and bladder incontinence. Practitioners were also interviewed to understand their perspectives of intervention effectiveness. Results: Chart review indicated less than half of children were continent for bowel and bladder. More variability existed in bowel continence programs, and practitioners considered bowel continence more difficult to achieve than bladder continence. No significant associations were found between continence status and QOL measures. Interviews, however, reflected how managing continence at home and school more broadly affects QOL. Among practitioners, some focused primarily on optimizing physical health while others focused on activity and participation. Interpretation: While continence is a goal, programs used to achieve this are individualized and outcomes may be affected by differential treatment effects, environmental factors, and/or stigma experienced by children.
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health
- Developmental Neuroscience
- Clinical Neurology