Health-seeking behaviour, knowledge, and stigma around Tuberculosis: A mixed-method study with specific vulnerable population groups in India

Abstract

Background Diverse strategies, including addressing various social barriers, especially among key vulnerable populations, are needed to accelerate efforts to achieve India’s goal of ending TB by 2025. In this direction, a baseline study was conducted covering migrant, tribal, tea garden, urban and mining/industrial populations in four Indian states: Assam, Bihar, Telangana, and Karnataka. This study aimed to generate evidence about tuberculosis-related knowledge, levels of stigma, and health-seeking behaviour in these population groups. Methods The mixed methods study involved 189 cross-sectional polling-booth surveys with 8–10 adult male and female participants in each, 32 focus group discussions and 195 in-depth interviews among persons with TB, family members/caregivers, community members/structures from vulnerable groups, and National TB Elimination Programme staff during June-November 2021. The polling booth survey covered 2,507 respondents, and the data were analysed using bivariate, multivariate and qualitative techniques. Results Comprehensive knowledge of tuberculosis was highest among migrants (57%) and lowest among the mining/industrial population (16%). While over half of the participants, who themselves or a family member have had TB, experienced stigma from communities and health facilities, urban and mining/industrial populations expressed the highest self-perceived stigma. Immediate health-seeking for persistent cough of > 2 weeks was highest among tea-garden workers, tribal and migrants and lowest among urban and mining/industrial groups. FGDs/IDIs highlighted that superstitious beliefs and preferences for traditional healers delayed timely treatment-seeking. Discontinuation of treatment was predominantly due to high pill burden, adverse drug reactions, and initial signs of recovery. In the multivariate analysis, education, use of social media, comprehensive knowledge and low stigma were shown to promote improved health-seeking behaviour among migrants, mining/industrial and tea garden populations. Conclusions Vulnerable groups have different levels of knowledge about TB, ‘experienced stigma’, and preferences for the health sector. Programs focusing on customized communication strategies and behaviour change solutions to improve knowledge and dissipate stigma can help to improve early access to health care and create an enabling environment for persons with TB.