Children with Hydrocephalus and Spina Bifida in East Africa: Can family and community resources improve the odds?

Abstract

Hydrocephalus and spina bifida are life-threatening conditions that often result in severe disabilities. Risks are much reduced by immediate surgery and careful management, but neither has been available for most of the sub-Saharan African population. This paper traces the growth of solutions and some socio-cultural resources that historically have supported family and community care for children with severe disabilities, mainly in Tanzania, and nearby Uganda, Kenya, Malawi, Zambia and Zimbabwe. Some community-based rehabilitation (CBR) work with children with spina bifida and hydrocephalus is described, and challenges to the CBR approach are noted from the increased survival of people with disabilities requiring complex care. More appropriate information, recognition of indigenous knowledge, enlistment of community resources and financial assistance are needed to enhance the lives of East Africans with hydrocephalus, spina bifida and other severely disabling conditions.

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