Conceptualising the experience of having TB: a global qualitative study

Area of Science:

• Public Health
• Infectious Diseases
• Social Science

Background:

• Tuberculosis (TB) and its treatment are known to negatively affect health-related quality of life.
• Limited data exists on the personal experiences of individuals with pulmonary TB.

Purpose of the Study:

• To conceptualize the personal experience of tuberculosis (TB) by synthesizing existing literature and contemporary social media data.
• To understand the multifaceted impacts of TB on individuals and their caregivers globally.

Main Methods:

• Conducted a literature review of published articles and online content related to TB experiences.
• Analyzed social media posts (2020-2022) from multiple countries and income levels to capture current patient and caregiver perspectives.
• Developed a conceptual model of TB symptoms, impacts, and challenges.

Main Results:

• Literature review yielded a conceptual model of TB symptoms, impacts, and challenges.
• Social media analysis from 15 countries revealed significant physical (48%), emotional (28%), economic (18%), and social (13%) impacts.
• Diagnosis of TB was often linked to delays, access issues, and confusion with COVID-19 symptoms.

Conclusions:

• Individuals with TB worldwide experience impacts across multiple life dimensions.
• The nature and severity of these impacts are influenced by geographic location, socioeconomic status, and cultural context.
• Further research is needed to address the specific, localized experiences of people affected by TB.