1 / 16

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

Mobility, incontinence, and social functioning of children with spina bifida in Uganda. Femke Bannink Mbazzi & Geert van Hove. Republic of Uganda Population: 32 million Life expectancy: 52.3 years Language: English and local languages Fertility rate: 7.2 Growth rate: 3.6%

gefjun
Download Presentation

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

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. Mobility, incontinence, and social functioning of children with spina bifida in Uganda Femke Bannink Mbazzi & Geert van Hove

  2. Republic of Uganda • Population: 32 million • Life expectancy: 52.3 years • Language: English and local languages • Fertility rate: 7.2 • Growth rate: 3.6% • War in northern region from 1984 – 2006 • Poor public infrastructure (health care, education, roads)

  3. Spina Bifida

  4. Spina bifida in Uganda • 1-2 in 1,000 live births; estimated 1,400 / year (Warf, 2011). Approximately 10% of these receive neurosurgical care. The remaining most likely dies. • Prevention: poor feeding, malnutrition, lack of folic acid intake, poor antenatal care (Miles, 2006) • Barriers to treatment: lack of knowledge (Mertens and Bannink, 2012), negative attitudes and beliefs (Bannink, Idro, van Hove 2013), poverty (Miles, 2006).

  5. Study population • Part of a larger quality of life study, looking at belonging from a daily, social, cognitive, and family functioning and inclusion perspective • 132 children with spina bifida aged 4 to 14 years and their families • Recruitment through rehabilitation centers and tracing in communities • In 5 locations in Uganda, rural and urban settings

  6. Methods • Qualitative: focus group discussions, semi structured interviews, and case studies • Quantitative: assessment scales, adapted to cultural reality. For social functioning: Vineland Adaptive Behavior Scales and the Strengths and Difficulties Questionnaire • NVIVO and SPSS were used for data analysis

  7. Results - Social functioning * p<.05; ** p<.01; *** p<.001

  8. Results – Predictors Social functioning Multiple regression analysis * p<.05; ** p<.01; *** p<.001

  9. Daily functioning

  10. Attitudes, beliefs, and practices • Community members often believe the child and his/her family and has been cursed • A fourth of the mothers in our study were abandoned by their husbands and in laws • In northern Uganda children are ‘accidentally untied’ from the mother’s back while crossing a river leading to drowning

  11. Mobility and assistive devices 63.6% (84) of the children interviewed need assistive devices for mobility: • 29.8% (25) use a wheelchair • 21.4% 18) uses crutches • 6.0% (5) use walking frames • 42.9% (36) crawled due to lack of access or use of a device. Almost all these children have pressure sores, mostly on their feet Most children using a wheelchair prefer to crawl when interacting with peers

  12. Incontinence and CIC • 89.4% (118) is incontinent, and practices bowel wash out (70.5%) and clean intermittent catheterization (75.8%) • Practicing in school and public places is difficult due to lack of facilities and adults to assist.

  13. Schooling • 55% of children with SB in school vs 83% nationally • Approximately 1 year behind their age mates • Reasons for not schooling: inaccessibility, financial problems, incontinence, and bullying

  14. Parent Support Groups • Families are the primary caregivers, there is no institutionalized care, nor specialists care • 40% of parents are members of parent support groups • Parents are trainers, advocates for inclusion

  15. Does Ruth belong?Is she included?

More Related