On Human Rights Day, December 10, KNCV Tuberculosis Foundation hosted the webinar Untangling TB Stigma, focusing on the fundamentals of health-related stigma and its association with tuberculosis (TB).
“…respecting all individuals is at the core of eliminating stigma”
Bianca Tasca
As participants started to join, Bianca Tasca opened the session with a warm welcome and presented KNCV’s mission and vision, and the objective of this webinar. Bianca then introduced the first speaker, public health and infectious disease specialist, Kathy Fiekert, who explained what she called, the “recipe for stigma” and reflected on what is stigma and how is stigma created.
Kathy defined stigma as the relationship between an attribute and a stereotype that assigns undesirable labels, qualities, and behaviors to a person. She mentioned that labeled individuals are then devalued socially, which leads to inequality and discrimination.
Stigma is easily created but once established it is very hard to eradicate. In consequence, stigma has a devastating effect on individuals, their families and communities, and society as a whole. It erodes “humanity“ as it erodes empathy.
“Stigma eradication is everyone’s business”
Kathy Fiekert
Stigma is universal in the sense that all societies have norms that dictate acceptable behaviors and attributes. However, what constitutes stigma varies greatly across cultures due to differing norms, values, and beliefs.
The following presentations covered the impact of stigma at different levels and the application of the Health-Related Stigma and Discrimination Framework, by the experts Niesje Jansen, Senior Nurse Consultant, and Ineke Spruijt, TB consultant and epidemiologist.
“Stigma separates us from them.”
Niesje Jansen
What is the impact of stigma?
Stigma, and in the case of TB-related stigma, affects every stage of the patient pathway, including delayed care-seeking due to fear, reduced treatment adherence, and incomplete contact tracing. These behaviors not only harm individuals but also affect the communities at large, potentially influencing community transmission. As Niesje remarked during her presentation, stigma “will affect everyone around a person with TB. It is also affecting treatment initiation and completion.”
Social and economic consequences:
Stigma deeply affects individuals by reinforcing inequality and social isolation. Stigma can make people lose their status in the community. As Niesje shared the story of a young lady diagnosed with TB and her experience as a target of stigma, she reflected that stigmatizing and stigma itself can also be the cause of economic hardships such as job loss and catastrophic costs associated with TB globally. It has been seen that stigmatized individuals often face diminished social support, exacerbating their struggles.
Impact of stigma on healthcare workers:
Healthcare workers involved in TB care often experience stigma themselves, being perceived as “dirty workers“. This is detrimental to their mental well-being, relationships with colleagues, and the quality of care they provide, as seen during both TB and COVID-19 pandemics.
As part of a society with norms, values and beliefs, healthcare workers are not exempt from, unintentionally, perpetuating stigma on the populations they serve. It is not uncommon to hear stories about healthcare workers advising their patients to “not tell anyone that you have tuberculosis”, a reality that is prevalent for this and other infectious diseases or chronic conditions. Examples include associating conditions like diabetes with personal failure or danger to others.
Then, what are the drivers of stigma?
We can say that stigma arises when a difference is identified, labeled and linked to a negative trait, and blamed on the individual. Ineke commented that while many studies focus on the manifestations of stigma (e.g., experiences and practices), it is crucial to explore the broader social, cultural, political, and economic forces that shape stigma. And this includes understanding why stigma exists, why people stigmatize, and the impacts on both the stigmatized individuals and their communities.
Major drivers include fear, ignorance, prejudice, and blame. Fear often dominates as a stigma driver, leading to heightened intolerance and social distancing, as has been witnessed during the COVID-19 pandemic. Fear then leads to social exclusion, discrimination, and curtailment of rights.
“If we really want to understand stigma, we need to understand the broader social, cultural, political and economic forces that structure stigma. And we should not distinguish between the stigmatized and stigmatizer, or else us and them as we have heard before.”
Ineke Spruijt
Ineke introduced the Health Stigma and Discrimination Framework as a valuable tool to understand stigma, and explained how the components of this framework (drivers, facilitators, manifestations, intersecting stigmas and outcomes) can support the efforts towards tackling stigma at different levels. At the program level, it identifies stigma drivers and facilitators, assesses intervention impacts, and guides changes in policies. At the national level, it informs funding, programming, and scaling of stigma-reduction efforts by monitoring stigma outcomes. Learn more about the framework HERE.
So what can we do to end stigma?
Prejudice and ignorance, while impactful, differ in ease of resolution—prejudice is harder to change compared to addressing ignorance through education. Effective approaches include promoting empathy, providing experiential learning opportunities, and emphasizing education. Of course laws and policies play a supportive role, however emotional connection and awareness have a more profound impact in the lives of people and communities at large.
The webinar “Untangling TB Stigma” emphasized the role of individuals in combating stigma by becoming more aware, empathetic, and supportive. As KNCV, we have developed interventions such as the “TB Photovoices“, “From the Inside Out“, and the “Allies Approach” as tools to reduce stigma among people with TB and healthcare workers. These interactive interventions have been implemented in several countries with significant success, including training healthcare workers and integrating anti-stigma strategies into medical education.
Drawing from these interventions, we can confidently say that stories shared by TB survivors and healthcare workers through projects like photo exhibitions reveal the profound emotional and social challenges of stigma. Participants of these projects also report transformative experiences during these interventions, fostering empathy and reflection on their own biases.
Stigma is a complex social process that requires understanding beyond surface-level manifestations. By addressing drivers, facilitators, intersecting stigmas, and outcomes, while considering broader societal factors, we can better address health-related stigma.
Interested in knowing more about stigma reduction? Do you have an intervention in mind and want to partner with us? Contact us at stigmaredution@kncvtbc.org
Together we can end TB and TB-related stigma!
Download the webinar slides HERE and an Excel sheet with and exercise to adapt the Health Stigma and Discrimination Framework in your setting HERE.