"You find yourself in a very humiliating situation": experiences of people living with post-tuberculosis lung disease in Brazil

Abstract

Background: Brazil remains one of the 30 countries with the highest tuberculosis (TB) and TB-HIV coinfection burden. Post-TB lung disease (PTLD) is a set of sequelae that can occur in people who have been cured of TB.

Aim: To learn about the experiences of people living with PTLD (PLPTLD) and how healthcare workers (HCW) manage PTLD.

Methods: An exploratory qualitative study with a purposive sample of PLPTLD and HCW from two different cities. Open-ended interviews were conducted using a semi-structured interview guide, which were recorded and transcribed. Two researchers analyzed the interviews using an inductive approach and applied a content analysis framework to define categories.

Results: Forty-six participants were interviewed, and four categories emerged: PTLD as a social disease; stigma; the fragility of access; and limitations. The categories encompassed two main aspects like PTLD in activities of daily living and emotions in everyday life, for instance, challenges with preparing meals, getting a job, barriers to set clinical appointments or getting social assistance, and stigma.

Conclusion: This study reveals specific needs from patients and providers such as a lack of knowledge about PTLD, physical limitations, and stigmatization due to PTLD. It is crucial to address these issues in public health policies.

Keywords: Brazil; chronic disease; health services accessibility; post-tuberculosis lung disease; quality of life; tuberculosis.