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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%

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

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  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?

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