Children with disabling chronic conditions in the Western health subdistrict of Cape Town, South Africa: Estimating numbers and service gaps

Abstract

Background. Children with disabling chronic conditions often have extensive, complex and unmet healthcare and educational needs. They can be defined as a subset of the group of children with chronic health conditions whose condition results in some degree of functional or activity limitation. There is limited information in South Africa and other low- and middle-income countries with regard to the percentage of such children that access specialist health and special educational services, particularly in an urban setting, and what services exist for them.

Objectives. To count the number of children with disabling chronic conditions who were accessing specialist health and special educational services in the Western health subdistrict of Cape Town, and to briefly describe the access to services outside of hospital-based specialist services.

Methods. A cross-sectional observational study was conducted between January 2010 and December 2011. The target population included all children <19 years of age with disabling chronic conditions, living in the Western subdistrict of Cape Town, who were accessing specialist health and special educational services. Such children were identified from the relevant referral hospitals, educational institutions, and private and non-profit organisations in the area.

Results. A total of 1 138 children with disabling chronic conditions were identified. In the context of an under-19 population of 112 249, this corresponds to a rate of 10 per 1 000, whereas the expected rate of children with disabling chronic conditions would be about 50 per 1 000. Only 14% of children in special educational institutions attended specialist paediatric services during a 2-year period. Allied health and medical services for children outside of hospitals were very limited.

Conclusions. There are a significant number of children with disabling chronic conditions who do not access health and special educational services in the Western health subdistrict of Cape Town. Medical and allied health support for children in institutions is very limited. Current information systems are inadequate to describe the need.