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