Mobility, incontinence, and social functioning of children with spina bifida in Uganda

Saturday, November 2, 2013
First author:
Bannink F.
Symposium:
Making Inclusion Work
Type:
Oral
Organisations

1 Ghent University, International Federation of Spina Bifida and Hydrocephalus Uganda office, Kampala, Uganda

2 Ghent University, Faculty of Psychology and Educational Sciences, Disability Studies, Ghent, Belgium

All authors:

Femke Bannink1, Geert van Hove2

Stream:
Social Inclusion & Representation

Aim

To describes disability specific factors affecting social functioning of children with spina bifida in Uganda.

Methods

In total 132 parents of children with spina bifida between 4 and 14 years of age were interviewed in 5 locations. A questionnaire and selected sub-scales of the Vineland Adaptive Behaviour Scales, and the Strengths and Difficulties Questionnaire were used to measure daily functioning, emotional and social functioning, and relationships with peers. Regression analysis was carried out using SPSS16.

Results

Average age of the children was 6 years, 43.2% were female, 63.6% need assistive devices: 29.8% used a wheelchair, 21.4% crutches, 6.0% walking frames, and 42.9% crawled due to lack of access or use of a device. The majority is incontinent (89.4%), and practices clean intermittent catheterization (75.8%). In total 56.1% goes to school compared to 83% nationally; on average children are a year behind their age mates. Children with lower daily functioning skills scores, and non managed incontinence had significantly more difficulties with social and peer relationships. No difference was found between children in and out of school. Children whose parents participated in self help groups had significantly better social scores.

Conclusions

Almost half of the children in need of assistive devices do not have access to these.  Most of them are incontinent and practice clean intermittent catheterization. To improve social participation of children with spina bifida interventions need to focus on provision of relevant assistive devices, improving daily functioning skills, use of catheterization, and promoting participation in parent support groups.