Participation of Children with Spina Bifida: A Scoping Review Using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) as a Reference Framework

Abstract

Background and objectives. Participation is a fundamental right of the child, regardless of his health status. Assessing and supporting the participation of children with spina bifida (SB) presents a significant challenge for practitioners. The purpose of this study was to examine what is known about the participation of children with SB. Materials and Methods. The framework for scoping reviews from Arksey & O’Malley was used. A literature search in Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medical Literature Analysis and Retrieval System Online (Medline), PsychINFO and the Education Resources Information Centre (ERIC) databases retrieved 136 papers, 10 of which met the criteria for inclusion and were selected for analysis. Synthesis of the results on participation within occupational domains of leisure, school and community, and factors influencing participation of children with SB was performed. Results. All the included studies were non-experimental and used cross-sectional, population-based or qualitative design. Most studies analysed social participation or participation in physical activities, except one that focused on school participation. Data from these studies have shown that children with SB experience greater participation restrictions compared to their typical peers or children with other chronic diseases. The participation was mainly affected by contextual factors. Relationships between pathology and participation were not sufficiently validated. Conclusions. There is little research on the participation of children with SB. Future studies must consider contextual factors and interventions facilitating or impeding participation.