Zambia og Malawi 2007 18018 May 2017 // Dr. Helen Sims-Williams, one of our advisors and volunteers who periodically works in Uganda with CURE Uganda and our other partners there, and our Global Experts Panel member Dr. Benjamin Warf, have collaborated on a study about the quality of life among children with spina bifida in Uganda.

Defining ‘quality of life’ is never an easy task because, as WHO explains, ‘quality of life’ (QOL) is an individual’s perception of their position in life in the context of their culture and value systems. Definitely, QOL is a subjective term which depends on different and variable facts.

Taking into account the geographic variation, the average worldwide prevalence of neural tube defects, such as spina bifida, has been estimated at one case per 1000 births, developing hydrocephalus in 50-90 per cent of cases. In developing countries, the prevalence will most likely be much higher, but proper surveillance data are lacking. The study with regard to the QOL of children with spina bifida in Uganda identified that there are four independent variables associated with subjective QOL: male sex, hydrocephalus, urinary incontinence and family size.

All those factors directly affect the mental health and self-esteem of children with spina bifida and hydrocephalus. The clearest example lies in the urinary incontinence: in low-income countries the cost of nappies and catheters, if they are available, is prohibitive and laundry and personal care are more challenging, which is directly related with low level of school attendance and possible bullying. Also, family care and a sense of belonging may be more important than formal education in Africa.

Future work should be directed towards improving continence management by teaching caregivers the technique of clean intermittent catheterization (CIC) and its importance for a child’s health and survival, as well as by offering free or affordable supplies of catheters and oxybutynin. In Uganda, IF provides these materials for free to families that attend the clinic at CURE Children’s Hospital. In addition, education should be given to new mothers with regard to family planning to try and reduce the family size. Improving the QOL of children with disabilities in low-income countries by investing in community-based rehabilitation should be a national and international priority.

The study, published in the journal Archives of Disease in Childhood, is available here.

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