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Background: Though tuberculosis (TB)-related stigma is a recognized barrier to care, interventions are lacking, and gaps remain in understanding the drivers and experiences of TB-related stigma. We undertook community-based mixed methods stigma assessments to inform stigma intervention design., Methods: We adapted the Stop TB Partnership stigma assessment tool and trained three peer research associates (PRAs; two TB survivors, one community health worker) to conduct surveys with people with TB (PWTB, n  = 93) and caregivers of children with TB ( n  = 24) at peri-urban and rural clinic sites in Khayelitsha, Western Cape, and Hammanskraal, Gauteng Province, South Africa. We descriptively analyzed responses for each stigma experience (anticipated, internal, and enacted), calculated stigma scores, and undertook generalized linear regression analysis. We conducted 25 in-depth interviews with PWTB ( n  = 21) and caregivers of children with TB ( n  = 4). Using inductive thematic analysis, we performed open coding to identify emergent themes, and selective coding to identify relevant quotes. Themes were organized using the Constraints, Actions, Risks, and Desires (CARD) framework., Results: Surveys revealed almost all PWTB (89/93, 96%) experienced some form of anticipated, internal, and/or enacted stigma, which affected engagement throughout the care cascade. Participants in the rural setting (compared to peri-urban) reported higher anticipated, internal, and enacted stigma (β-coefficient 0.72, 0.71, 0.74). Interview participants described how stigma experiences, including HIV intersectional stigma, act individually and together as key constraints to impede care, leading to decisions not to disclose a TB diagnosis, isolation, and exclusion. Stigma resilience arose through the understanding that TB can affect anyone and should not diminish self-worth. Risks of stigma, driven by fears related to disease severity and infectiousness, led to care disengagement and impaired psychological well-being. Participants desired counselling, identifying a specific role for TB survivors as peer counselors, and community education., Conclusions: Stigma is highly prevalent and negatively impacts TB care and the well-being of PWTB, warranting its assessment as a primary outcome rather than an intermediary contributor to poor outcomes. Multi-component, multi-level stigma interventions are needed, including counseling for PWTB and education for health workers and communities. Such interventions must incorporate contextual differences based on gender or setting, and use survivor-guided messaging to foster stigma resilience., Supplementary Information: The online version contains supplementary material available at 10.1186/s44263-024-00070-5., Competing Interests: Competing interestsThe authors declare that they have no competing interests., (© The Author(s) 2024.)

Background: Anticipated, internal, and enacted stigma are major barriers to tuberculosis (TB) care engagement and directly impact patient well-being. Unfortunately, targeted stigma interventions are lacking. We aimed to co-develop a person-centred stigma intervention with TB-affected community members and health workers in South Africa., Methods: Using a community-based participatory research approach, we conducted ten group discussions with people diagnosed with TB (past or present), caregivers, and health workers (total n  = 87) in Khayelitsha, Cape Town. Group discussions were facilitated by TB survivors. Discussion guides explored experiences and drivers of stigma and used human-centred design principles to co-develop solutions. Recordings were transcribed, coded, thematically analysed, and then further interpreted using the socio-ecological model and behaviour change wheel framework., Results: Intervention components across socio-ecological levels shared common functions linked to effective behaviour change, namely education, training, enablement, persuasion, modelling, and environmental restructuring. At the individual level, participants recommended counselling to improve TB knowledge and provide ongoing support. TB survivors can guide messaging to nurture stigma resilience by highlighting that TB can affect anyone and is curable, and provide lived experiences of TB to decrease internal and anticipated stigma. At the interpersonal level, support clubs and family-centred counselling were suggested to dispel TB-related myths and foster support. At the institutional level, health worker stigma reduction training informed by TB survivor perspectives was recommended to decrease enacted stigma. Participants discussed how integration of TB/HIV care services may exacerbate TB/HIV intersectional stigma and ideas for restructured service delivery models were suggested. At the community level, participants recommended awareness-raising events led by TB survivors, including TB information in school curricula. At the policy level, solutions focused on reducing the visibility generated by a TB diagnosis and resultant stigma in health facilities and shifting tasks to community health workers., Conclusions: Decreasing TB stigma requires a multi-level approach. Co-developing a person-centred intervention with affected communities is feasible and generates stigma intervention components that are directed and implementable. Such community-led multi-level intervention components should be prioritised by TB programs, including integrated TB/HIV care services., Supplementary Information: The online version contains supplementary material available at 10.1186/s44263-024-00084-z., Competing Interests: Competing interestsThe authors declare no competing interests., (© The Author(s) 2024.)

Background: Translating health policy into effective implementation is a core priority for responding effectively to the tuberculosis (TB) crisis. The national TB Recovery Plan was developed in response to the negative impact that the COVID-19 pandemic had on TB care in South Africa. We aimed to explore the implementation of the TB Recovery Plan and develop recommendations for strengthening accountability for policy implementation for this and future TB policies., Methods: We interviewed 24 participants working on or impacted by TB policy implementation in South Africa. This included perspectives from national, provincial, and local health department representatives, civil society, and community representatives. In-depth interviews were conducted in English and isiXhosa and we drew on reflexive thematic methods for analysis., Results: Participants felt that there was potential for COVID-19 innovations and urgency to influence TB policy development and implementation, including the use of data dashboards. Implementation of the TB Recovery Plan predominantly used a top-down approach to implementation (cascading from national policy to local implementers) but experienced bottlenecks at provincial level. Recommendations for closing the TB policy-implementation gap included using phased implementation and enhancing provincial-level accountability. Civil society organisations were concerned about the lack of provincial implementation data which impeded advocacy for improved accountability and inadequate resourcing for implementation. Community health workers were viewed as key to implementation but were not engaged in the policy development process and were often not aware of new TB policies. At local level, there were also opportunities to strengthen community engagement in policy implementation including through community-led monitoring. Participants recommended broader multi-stakeholder engagement that includes community and community health worker representatives in the development and implementation phases of new TB policies., Conclusions: Communities affected by TB, with the support of civil society organisations, could play a bigger role in monitoring policy implementation at local level and need to be capacitated to do this. This bottom-up approach could complement existing top-down strategies and contribute to greater accountability for TB policy implementation., Supplementary Information: The online version contains supplementary material available at 10.1186/s44263-024-00077-y., Competing Interests: Competing interestsThe authors declare that they have no competing interests., (© The Author(s) 2024.)