TB Stigma Project
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. Demand creation and community engagement based on scientific evidence
TB Proof used a multi-pronged approach to raise awareness about TB and reduce TB stigma in communities.
Community engagement activities included:
- Sharing personal stories of being affected by TB (Click here to view some of our latest videos).
- Hosting a TB stigma hackathon to come up with innovative ideas to address TB stigma and participating in the Stop TB Partnership’s international TB stigma hackathon.
- Co-hosting four school events in Khayelitsha to raise awareness about TB with the youth.
- Training one teacher and 10 School Care and Support Assistants (CSAs) as TB champions to expand TB knowledge among school learners.
- Presenting our research findings at the Union conference.
2. Conducting research to understand TB stigma and inform a TB stigma intervention
Starting in 2020, TB Proof has been implementing a research project with Stellenbosch University to conduct TB stigma assessments in Khayelitsha among people diagnosed with TB disease, TB survivors, caregivers of people with TB and health workers.
We found high levels of anticipated, enacted and internal stigma. TB Proof presented findings to key stakeholders for input on the development of a TB stigma intervention. We are currently piloting the TB counselling stigma intervention among people with TB and people at risk for poor TB treatment outcomes, including people struggling with substance abuse or mental health challenges, and found that this counselling strategy, based on principles of motivational interviewing, had a positive impact to support people taking TB treatment.
3. Advocacy / policy and decision maker engagement
TB Proof advocates 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 and in 2024 (also published here). Key asks included “Each person diagnosed with TB should have access to high-quality TB counseling.”
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 draft Implementation Plan: “Reduce stigma and discrimination to advance rights and access to services” (Objective 1.3).
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
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.
