Embedding community engagement in tuberculosis (TB) research: evidence from urban Bangladesh

According to the WHO Global Tuberculosis (TB) Report, Bangladesh recorded an estimated 379,000 new and relapse cases in 2023, with approximately 44,000 TB-related deaths. Bangladesh also ranks 22nd globally in tobacco use, which worsens TB outcomes by weakening immunity and reducing treatment effectiveness [1]. To address this TB-tobacco nexus, ARK Foundation conducted the Quit4TB Trial, funded by the NIHR Global Health Research Unit on Respiratory Health (RESPIRE), to evaluate an mHealth-based smoking cessation intervention among TB patients, with embedded community engagement to support intervention delivery. Why Community Engagement Matters Community engagement (CE) was incorporated not only to improve research relevance and uptake but also to co-develop communication materials that support smoking cessation within the intervention. For people affected by TB, who are often marginalised and stigmatized, integrating lived experiences into intervention design helps ensure that cessation support is contextually appropriate and acceptable in real-world settings.

The study engaged stakeholders, including individuals affected by TB, caregivers, healthcare workers, and representatives from NGOs. We followed a three-step model of Connect, Co-Create, and Collaborate. CE was operationalised across these phases, including early-stage trust-building and needs exploration (Connect), co-development of communication materials (Co-create), and iterative validation during implementation (Collaborate). Participants were engaged from design through to dissemination, contributing to materials intended to complement the mHealth intervention in routine care.

CE and Patient and Public Involvement (PPI) activities revealed how smoking, stigma, gender norms, and health system constraints shape TB treatment and recovery. Awareness of the smoking-TB link was low, and many patients underestimated smoking's role in delaying cure or misinterpreted nicotine withdrawal as TB symptoms. Gendered stigma emerged as a major barrier, with women facing severe social consequences and men more likely to delay care and continue smoking. Health system constraints highlighted the need for brief, non-judgmental counselling tools. These insights directly informed the development of communication materials that improved relevance, acceptability, and feasibility for use alongside the cessation intervention in routine TB care.

What began as a conventional study evolved into a co-creative process, demonstrating that respectful, sustained community engagement can embed community voices across all stages of research and lead to more inclusive and impactful public health solutions. These findings highlight the importance of integrating community engagement into TB research and policy, particularly in high-burden TB-tobacco contexts, to improve the effectiveness, acceptability, and equity of interventions. Tuberculosis (TB) remains a major public health challenge in Bangladesh, particularly in low-income urban settings where stigma, misinformation, and structural barriers delay care and undermine treatment adherence. Tobacco usage further worsens TB outcomes by weakening immunity and prolonging recovery. To address these interconnected challenges, the NIHR-funded Quit4TB Trial embedded community engagement and Patient and Public Involvement (PPI) throughout the research process. We engaged individuals affected by TB and survivors, family caregivers, frontline providers, NGO staff, and government stakeholders across three urban sites. Using a three-phase approach: Connect, Co-create, and Collaborate, by which we built trust, explored lived experiences, and jointly developed communication tools and policy-relevant insights. Participants highlighted how stigma, gender norms, and low awareness of the smoking-TB link hinder recovery. Healthcare providers described severe time and infrastructure constraints that limited counselling. These insights directly shaped co-designed, stigma-sensitive communication materials, including brochures and brief provider scripts, refined through iterative feedback and member-checking. Our experience demonstrates that even in resource-constrained settings, meaningful engagement is both feasible and impactful. Embedding community voices across research stages improves relevance, acceptability, and the likelihood that interventions will be understood, trusted, and used in real-world TB care.