Stigma towards people affected by TB is a serious barrier to get screened, tested, diagnosed, start treatment in time, and complete treatment.
To help civil society and TB-affected communities learn more about stigma and fight it further, the Stop TB Partnership has developed a stigma assessment tool.
This tool for assessing stigma on behalf of community, rights and gender (CRG) is guiding to assess the level and extent of different types of stigma using quantitative and qualitative research methods. Findings from such research help design evidence-based and non-stigmatizing policies, and take actions and interventions that respect the rights of people with TB.
The document shared on http://stoptb.org/assets/documents/communities/CRG%20Investment%20Package_TB%20Stigma%20Assessment_10.02.2020.pdf, provides a good overview of how to conduct stigma assessment research involving people with TB and their families, the community, healthcare personnel and other stakeholders, including civil society, as well as policymakers and decision-makers. Most commonly, the research takes 6 to 12 months and consists of desk review, face-to-face interviews using a semi-structured questionnaire, and focus group interviews with a variety of stakeholders with knowledge of the local TB situation and the appropriate response. The results of the stigma assessment enable the drafting of an action plan for stigma reduction and the strategic guidance of the National TB Program.
“Our goal is to assess to what extent stigma is a barrier for TB care,” – says Vladislav Denisenko, Senior Officer at 100% Life, about the assessment of the level of stigma in Ukraine, – “Stigma is greatly underestimated. First of all, it is underestimated by the health workers themselves. But stigma is a significant factor in not asking people for help or very late appeals. It also significantly influences the trust between the person affected by TB and the doctor, and this undoubtedly affects the results of treatment. ”
The study of the level of stigma has started in Ukraine in the summer of 2020, and the field phase of the study is still ongoing in 14 of the 27 regions of the country. As of the end of 2020, more than 700 of the planned 1,100 people affected by TB were interviewed; also 240 health workers, relatives of people affected by TB, government officials, partner organizations have participated in the study. Due to quarantine restrictions caused by COVID-19, surveys are carried out by phone. The surveys are conducted by representatives of the largest community affected by TB in the country – TBPeople Ukraine with the participation of professional interviewers.
As part of the research in Ukraine, different areas are being studied, including:
- Secondary stigma from family members,
- Stigma in the local community,
- Stigma in healthcare facilities,
- Stigma towards TB healthcare providers by other healthcare providers,
- Preparation of recommendations.
An overview of the types of stigma and the main steps for conducting a stigma assessment (goals, target audience, human resources, methodology, face-to-face and focus group interviews, timeline, budget, ethical approval of the research protocol, data collection, data entry and analysis, conclusions and recommendations, discussion of research findings, budgetary action plan, planning and communication) are detailed in the Stop TB Partnership’s Guide to TB Stigma Assessment http://www.stoptb.org/assets/documents/communities/STP%20TB%20Stigma%20Assessment%20Implementation%20Handbook.pdf. In addition, this Guide contains examples of the various documents needed to conduct a stigma assessment study, including an informed consent form and questionnaires for semi-structured interviews with various target groups (http://www.stoptb.org/assets/documents/communities/STP%20TB%20Stigma%20Assessment%20Data%20Collection%20Instruments.pdf).
In the near future, all this information will be supplemented and collected in a special brochure prepared by TBEC under the “Community, Rights and Gender Strategic Initiative – Meaningful Engagement and Capacity Development of Key and Vulnerable Populations” for civil society organizations and communities, on the practical use of the Stop TB Partnership’s core assessment tools, among which the TB stigma assessment tool is prominent.
And we encourage you to include research on the stigma of people affected by TB in your grant requests from the Global Fund to Fight AIDS, Tuberculosis and Malaria, guided by the information in the 2020-2022 Grant Applicant Handbook. https://www.theglobalfund.org/media/4755/fundingmodel_applicanthandbook_guide_en.pdf