Dados do Trabalho

Título

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

Introdução

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. Existing data indicate that typical symptoms of PTLD occur in  up to 50% after treatment. At present, there is a lack of knowledge about the needs for health and well-being of these individuals and services provided to this population are scarce. Previous studies have shown the risk factors for PTLD progressing, among which are various levels of poverty, advanced age, and repeated treatment for TB. Moreover, PTLD is a long-lasting disease of high-magnitude. In addition to individual morbidity, PTLD also poses health systems challenges, including unnecessary hospitalization and re-treatment for active TB. Given the large burden of PTLD and the growing awareness, it is critical to comprehend the experience of people living with PTLD in Brazil. Such knowledge is critical to develop interventions and improve health and living conditions. 

Objetivo (s)

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

Material e Métodos

An exploratory qualitative study with a purposive sample of people with PTLD 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. The project was approved by the Research Ethics Committee of the Federal University of Pará (6.073.455), Hospital de Clínicas de Porto Alegre (6.161.106), and Fundação Escola de Saúde Pública de Palmas (6.054.753). All subjects included in this study provided written Informed Consent before data collection. 

Resultados e Conclusão

46 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. 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. 

Palavras Chave

Tuberculosis; Chronic Disease; Post-tuberculosis Lung Disease; Quality of Life; Health Services Accessibility; Brazil.