From Lived Experience to Action: Community-Led TB Solutions for Tuberculosis

This case study shows how LIGHT’s work in Nigeria and Uganda placed people affected by TB at the centre of research, dialogue, and action. Through participatory approaches including photovoice, community engagement, and the co-creation of the DESTINE intervention, LIGHT worked with TB survivors, families, healthcare workers, and community leaders to better understand the structural and gendered barriers that shape TB care. In doing so, the programme generated powerful evidence on stigma, poverty, masculinity, weak health systems, and the lasting consequences of TB, while also revealing the overlooked strengths, leadership, and advocacy potential within TB-affected communities. The case study demonstrates the difference this work made. In Nigeria, the co-created, community-led DESTINE approach demonstrated that gender-responsive TB interventions can be both acceptable and effective, contributing to improved TB knowledge, reduced stigma, and a 35% increase in TB notifications in intervention communities. In Uganda, photovoice created space for TB survivors to share their experiences directly with policymakers and programme stakeholders, strengthening recognition of TB survivors as credible partners in the TB response and informing future community engagement strategies. Across both countries, LIGHT’s work built confidence, skills, and visibility among TB-affected communities, strengthened collaboration between communities, researchers, and TB programmes, and showed that people with lived experience can do far more than tell their stories — they can shape solutions, influence policy discussions, and drive locally owned action. Overall, the case study shows that people affected by TB are not just beneficiaries of care, but essential partners in designing solutions; therefore, community-led and gender-responsive TB responses are not only more equitable, but also more practical, trusted, and effective in reaching people who are often missed by formal services.