Patterns and predictors of participation in children and adolescents with spina bifida

Abstract

Purpose: Participation is defined as involvement and engagement in all life situations and is seen as an essential condition for children’s development. Here, we analyzed the patterns and predictors of participation for Lithuanian children and adolescents with spina bifida (SB).

Material and methods: A cross-sectional design was employed. Parents of children aged 5–18 years with SB (n = 99) completed the Participation and Environment Measure for Children and Youth. Information about children’s health conditions and functional issues was also collected. Descriptive statistics were used to analyze participation patterns, and multiple linear regression analyses were employed to identify the significant explanatory factors in each setting.

Results: Participation restriction was mainly observed in preschool/school and the community settings. The environmental factors consistently explained at least one dimension of participation across all settings. Intellectual abilities had a substantial effect on participation in the home and preschool/school setting, whereas the contribution of bowel incontinence was observed in the preschool/school setting.

Conclusions: Our findings highlight the role of intellectual functioning, bowel continence, and the environmental factors in explaining participation of children with SB across different settings and, therefore, demonstrate the need for more supports and environmental modifications (especially for those who have lower level of cognitive abilities), as well as interventions targeting improved bowel continence.

Implications for rehabilitation

1. Children with spina bifida had low levels of participation in the community and preschool/school settings.

2. The most important predictors for participation were intellectual abilities, bowel continence, and the environmental factors.

3. Practitioners should pay more attention to environmental modifications (especially for children who have lower level of cognitive abilities) as primary targets of interventions aimed at promoting participation.

4. Strategies to improve bowel continence could improve participation in the preschool/school setting.

Keywords:

• Child
• environmental factors
• involvement
• participation
• spina bifida

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The author’s doctoral studies were supported by the scholarships from the Research Council of Lithuania (2015–2019).