#UseMyVoice to #EndTB
Stigma can prevent people with TB symptoms being screened for TB and is a barrier to completing TB treatment. Approximately 60% of people living with TB in South Africa also have Human Immunodeficiency Virus (HIV), another highly stigmatised disease. A community, rights and gender assessment done in South Africa revealed that stigma and discrimination is pervasive among South African communities.
Ending TB stigma is a global priority, as demonstrated through the political declaration signed by global leaders at the United Nations (UN) High-Level Meeting (HLM) on TB in 2018, where commitments included “to promote and support an end to stigma and all forms of discrimination”. Addressing TB stigma, human rights- and gender-related barriers to accessing TB care are national priorities for South Africa.
South African community health workers (CHWs) play a critical role in supporting person-centred care: raising TB awareness, providing TB information in local languages to communities, and supporting people with TB at each step on the care cascade.
In the Use MY Voice to EndTB project, TB Proof is evaluating TB related stigma experienced in two underserved communities affected by TB (Hammanskraal, Gauteng Province and Khayelitsha, Western Cape). TB Proof will use the findings to co-develop stigma reduction interventions with key community stakeholders, which may be adapted based on gender and other characteristics of the target population. This project is implemented in partnership with Stellenbosch University.
1. Scoping review
We conducted a scoping review to map the literature on TB stigma interventions to inform our project protocol.
Our review highlighted that further studies are needed to guide optimised intervention design and implementation. TB Proof’s abstract was accepted for oral presentation at the forthcoming Union Conference on Lung Health 2021 and a manuscript is in preparation.
2. Cultural adaptation of a community based stigma assessment tool with Community Health Workers
TB Proof’s research assistants and TB advocacy officers, Phumeza Tisile and Goodman Makanda, attended stigma assessment training and subsequently delivered a workshop to provide training to 15 CHWs in Khayelitsha to adapt and refine the Stop TB Partnership stigma assessment questionnaire.
3. Community based stigma assessments
Ethics approval for this project was obtained from Stellenbosch University along with provincial approvals in the Western Cape and Gauteng provinces.
In Khayelitsha and Hammanskraal, TB Proof is conducting stigma assessments among TB affected households using semi-structured questionnaires and interviews to assess gender related-and other barriers to care and factors that enable high quality TB care. The questionnaires are available in English, Xhosa and Sotho.
TB Proof shared learnings from the stigma assessments in an article published by Spotlight, ‘Could community health workers be the answer to reducing Tuberculosis stigma?’ Click here to read the article.
4. Data analysis and recommendations
Findings of the scoping review and stigma assessments were discussed at a multi stakeholder meeting for input to inform the development of stigma reduction interventions.
5. Social Media
As part of our #UseMyVoice to #EndTB project, TB Proof utilised our social media platforms to raise awareness about TB stigma as well as to educate the public on stigma. We also asked TB survivors to share their stories of experiencing TB stigma with us.
To view our top three posts per social media platform, click here.
TB Proof arranged a Twitter Chat on Stigma – A major hurdle in the fight against TB. Panelists included: Lucica Ditiu and James Malar (Stop TB Partnership), Ruvandhi Nathavitharana and Phumeza Tisile (TB Proof), B’Flow (Artist), Saurabh Rane (Survivors Against TB), Renier Coetzee (University of the Western Cape), Sam Makau (Waci Health), Robert Igbinoba (Robert Igbinoba Real Foundation for Housing & Urban Development) and Erika Mohr-Holland (Médecins Sans Frontières). This Twitter chat had 5.98 million impressions.
To view the full report, click here.
1. TB awareness campaign materials
TB focused messages will be developed through a participatory approach with input from community members, community leaders and CHWs in Hammanskraal and Khayelitsha. Messages will be developed based on the results of the stigma assessment through a gender lens and shared at community-level. TB Proof will lead a workshop with CHWs and TB champions including community leaders to co-create a framework for person-centered TB stigma reduction interventions.
2. Guidance regarding community-based monitoring approaches to document and address stigma experienced by TB affected communities
TB Proof will facilitate engagement between CHW TB champions, local clinic managers, regional TB coordinators and Department of Health staff to develop community-based monitoring approaches to document and address stigma experienced by TB affected communities they serve. TB Proof will advocate for effective stigma interventions.
This project is funded by the Stop TB Partnership Challenge Facility for Civil Society Round 9 grant.