Conceptualising the experience of having TB: a global qualitative study

TB and aspects of its treatment are known to impair health-related quality of life, but data are lacking on how pulmonary TB is experienced from the standpoint of affected individuals.

We conducted a review of published literature and online content with the goal of conceptualising the personal experience of TB. Using social media sources drawn from the years 2020-2022, concepts from the literature review were updated with the perspectives of people with TB and caregivers from multiple countries across different World Bank income categories.

The literature review identified 110 published articles and 91 stories of people with TB, enabling the generation of a conceptual model representing symptoms, disease impacts, and diagnostic and treatment challenges. Concepts of interest varied by country income level. The social media analysis captured 657 posts across 15 countries; the impacts described included physical (48%), emotional (28%), economic (18%), social (13%), caregiver (10%), and cultural (3%) impacts. Diagnosis was frequently associated with delays, access challenges, and confusion with COVID-19.

People affected by TB worldwide report impacts on multiple life dimensions, but the types of impact vary by geography, income, and culture. Additional research sensitive to local experience is needed.