Post TB CARE (NIHR, 2024-2028)
Goals
Patient-guided research, linking of networks, and the establishment of a collaborative centre of excellence for post-TB research care and community engagement in South Africa.
This project is implemented in collaboration with Stellenbosch University, The London School of Hygiene & Tropical Medicine, TB People Cambodia, and KHANA.
Achievements:
Community engagement
TB survivors with Post-TB disease were part of the proposal writing team and led work packages.
Community engagement took place through the establishment of patient listening groups and a Community Advisory Group (CAG) with study participants. Their feedback informed the development of data collection tools, guiding research implementation.
TB Proof developed a Post-TB policy brief with research participants that was presented to the Union’s Working Group on Post-TB in Copenhagen.
Study participants are part of the Post-TB champion and mentorship programmes. In addition, we partnered with 16 community leaders, including traditional healers and religious leaders, and 18 members of the Khayelitsha Health Forum to create demand for Post-TB care.
TB survivors shared their stories and advocated for improved care post-TB on the radio and social media.
We engaged with Prod Ndjeka through an advocacy letter and at the International Post-TB symposium, calling for a post-TB indicator and health worker training on Post-TB, and he responded that implementing post-TB care well should be prioritised.
We contributed to a publication advocating that person-centred post-TB care should be integrated into national TB policies (available here). We provided TB survivor perspectives as part of the submission advocating for a Post-TB lung disease ICD code.
WHO STAG-TB recommendations include prioritising post-TB care as part of person-centred care.
Our advocacy projects
TB Preventive Therapy
TB Stigma Project
All oral drug-resistant TB Treatment
