Time to be seen and heard: Including children’s and adolescents’ voices in the South African TB response

Abstract

Ciara Goslett’s account of childhood tuberculosis (TB) sheds light on the challenges faced by children diagnosed with TB in South Africa (SA). Children are particularly vulnerable to TB infection and to dangerous forms of disseminated TB such as TB meningitis, which can cause death or major lifelong disability. They have distinct challenges with diagnosis, and TB treatment for adults is not necessarily child- friendly. In the absence of a child-friendly formulation, adult tablets are broken into the correct dosage and used to treat children. Crushed and dissolved in water, the pieces are not very palatable for children. There are therefore issues that may be neglected if the voices of children are not included in the TB response in SA. These include delays in the development and accessibility of child-friendly medication, vaccine shortages and a lack of educational support for hospitalised children under school-going age. Some positive progress has been made through the establishment of the paediatric working group in the TB Think Tank, and SA’s contribution to pivotal childhood TB research studies. Additional steps could be the inclusion of children’s feedback in community-led monitoring efforts and engagement between child TB activists and the SA TB Caucus, a collective of parliamentarians.