TB Stigma Project (2020-2025)
Stigma is a term describing the feeling of being ashamed or experiencing societal disapproval in the way that people treat you. TB is a stigmatised disease because it is often associated with HIV, poverty, substance misuse, homelessness, being imprisoned or a refugee. Some people believe that only a ‘certain kind of person can get TB’, when the truth is anyone that breathes can get TB.
Stigma is a barrier to receive care – it makes it harder for TB patients to go to a clinic, get tested and receive treatment. Patients are afraid that family and friends will avoid them, that they might lose their job, and that their relationships can be harmed. By delaying seeking medical treatment, symptoms may worsen, making treatment more difficult, and the TB infection continues to spread in the community. Health workers can play an important role in treating people diagnosed with TB with compassion and respect and avoid using stigmatizing language (for example calling someone a “TB suspect” or “defaulter”) or not respecting someone’s privacy.
We can all help to reduce the harmful effect of TB stigma in our communities by taking part in activities that challenge false ideas and negative attitudes towards people with TB.
Aims
To improve patient engagement and loss to follow-up from TB care by adapting and piloting tailored TB counselling, combined with mental health and substance use screening tools, to identify high-risk individuals in need of context-informed social support strategies.
Project Achievements
1. Raising Awareness and Reducing TB Stigma Through Community Engagement
TB Proof used evidence-based strategies to raise awareness about TB and reduce stigma in communities. Our approach combined personal storytelling, community mobilisation, youth engagement, and public education.
Key activities included:
- Sharing personal TB stories – helping communities understand lived experiences and break stigma. [View our videos here]
- Hosting TB hackathons – including a local TB stigma hackathon and participation in the Stop TB Partnership’s international event to generate innovative solutions.
- Training and mentoring TB champions – including a teacher, 11 assistants, 17 community leaders (religious and traditional leaders), 9 taxi association members, and 10 taxi rank cleaners. [Videos available here]
- Public mobilisation and awareness campaigns – through school outreaches, radio interviews on Zibonele FM, and social media. Over 30,000 people were reached via social media, including:
- A World TB Day post that reached 1,800 people, promoting open conversations about TB stigma.
- A TB Hackathon post that reached 1,700 people, highlighting student-led solutions to tackle stigma.
We also developed and delivered a TB stigma training intervention for healthcare students and health workers and presented our research findings at the Union conference, ensuring that community engagement is backed by scientific evidence.
2. Understanding TB Stigma and Supporting People Through Treatment
Since 2020, TB Proof has been working with Stellenbosch University to study TB stigma in Khayelitsha. We spoke with people diagnosed with TB, TB survivors, caregivers, and health workers.
Our research found high levels of stigma — anticipated, experienced, and internalised. These findings helped us design a counselling program to support people living with TB.
Two TB survivors, Goodman and Phumeza, were trained in Motivational Interviewing (MI) to provide psychosocial support, focusing on people at risk of poor treatment outcomes, including those facing mental health or substance use challenges.
During the pilot:
- 10 TB patients received one-on-one counselling.
- 13 group MI sessions and 15 surveys captured the experiences of high-risk participants.
Participants often faced delays before diagnosis and stigma within families and communities, but many also had supportive relatives. MI counselling helped people disclose their TB status, reduce internal stigma, and stay motivated to complete treatment. One participant said:
“Now I feel comfortable talking to you, I can say everything I’m going through, and you don’t judge me.”
The program has been refined based on these findings, and we are preparing a publication to share its impact.
3. Advocacy / policy and decision maker engagement
We advocated for high-quality TB counselling through strong partnerships with civil society organisations and networks of people with TB. TB Proof co-developed advocacy letters sent to the Minister of Health in 2023, 2024 (also published here) and 2025. Key asks included “Each person diagnosed with TB should have access to high-quality TB counselling.”
We continue to hold the Western Cape Department of Health and Wellness accountable for implementing quality counselling as an approach to achieve aims in the Western Cape’s NSP Implementation Plan: “Reduce stigma and discrimination to advance rights and access to services”.
Resources
- World TB Day videos click here to view
- TB champions videos click here to view
- Community TB stigma video click here to view the video
- Health worker TB stigma video click here to view the video
- Journal articles:
Analysing interventions designed to reduce tuberculosis-related stigma: A scoping review click here to read more
- Health worker TB stigma training video click here to view the video
- Champions in action videos click here to view videos
Our advocacy projects
TB Preventive Therapy
Some people may have latent TB – where some is infected by the TB bacteria but they do not show TB symptoms and cannot infect others.
CHW TB Champions
A community health worker (CHW) is a representative of a specific community. They have earned the communities’ trust to enter their homes and assist them to improve their health status.
For many years patients were given a difficult choice: die because of drug resistant TB or become deaf as a results of the treatment.
Healthcare workers (HCWs) are three times more likely to be infected by TB than the general public and six times more likely to be hospitalized with drug-resistant TB.
