Fear of TB infection can lead to stigma

The recent research ‘Knowledge, attitudes, beliefs, and stigma related to latent tuberculosis infection: a qualitative study among Eritreans in the Netherlands’ by KNCV epidemiologist and TB consultant Ineke Spruijt shows that fear of infection with the tuberculosis (TB) bacterium can lead to stigma in people with the dormant non-contagious form of TB (LTBI). With the results of this research, even more targeted action can be taken against stigma in TB.

Countries where TB is no longer prevalent are focusing more and more on TB prevention programs. Important target groups for TB prevention programs in the Netherlands are asylum seekers and refugees. They often come from countries where TB is still prevalent. Tailor-made and culturally suitable screening and treatment programs are available for these target groups. These include interventions against TB stigma and LTBI stigma. So far, however, there was a lack of understanding of stigma associated with LTBI screening and treatment.

LTBI explained

Latent tuberculosis infection is a dormant form of tuberculosis (TB) in which individuals are infected with the TB bacteria. The dormant bacterium does not cause disease, it is in an inactive form in the body. Persons with a latent TB infection (LTBI) are not contagious. The bacteria can become active later in life and cause the disease TB. Therefore, it is useful to preventively screen and treat persons with a high risk of activation of the dormant bacteria – and thus the development of TB disease.

“Distressing and unacceptable”

Through interviews, the research focused on the knowledge, perceptions, beliefs and stigmatization of LTBI among Eritrean asylum seekers and refugees in the Netherlands. The research was carried out in cooperation with the Academisch Medisch Centrum (AMC) in Amsterdam.

Ineke Spruijt: “TB is a serious disease that can be treated well. Even better is that we can prevent the disease by testing and treating people with a high risk of TB for the dormant, non-contagious form. It is distressing and unacceptable that stigma endangers the therapy compliance and mental health of people who are treated preventively. That is why it is so important to get a good picture of LTBI stigma. Now that we know more, we can take more targeted action.”

Lack of knowledge

The study is one of the first studies to investigate LTBI stigma. The results show that the difference between latent LTBI and TB disease is difficult to understand for persons eligible for LTBI screening and treatment. The research shows that the lack of that knowledge leads to fear among acquaintances, friends and family to become infected with TB by persons with LTBI. This fear leads to stigma: persons with LTBI experienced or were afraid of gossip and avoidance of acquaintances, friends and family. This is comparable to stigma of TB disease.

Quote of person with LTBI (from the study): “Usually people ask you why you take medication. I can’t say it’s for LTBI, they wouldn’t understand the difference (ed. with TB disease). There are also people who don’t want to get close to you anymore when you tell them that you are taking medication against the TB bacteria.”

The current research concludes that TB prevention programs should include interventions that improve the knowledge and awareness of target groups in order to reduce TB and LTBI stigma. An example for such an intervention is repeated culture-sensitive education about TB and LTBI in one’s own language.

Tackling TB stigma at the root

KNCV’s philosophy on reducing TB is to build empathy and mutual respect between communities, health care workers and TB patients. The goal is to reduce the tendency to labeling, guilt and shame by strengthening the awareness of our own judgments. To tackle TB stigma at its root, KNCV has developed several innovative tools to better understand, measure and effectively address stigma.

The full publication of the research can be read here.

KNCV has been fighting TB since its establishment in 1903. Over the past 120 years, the organization has acquired indispensable knowledge and experience in the field of effective TB prevention and care, resulting in pre-elimination in the Netherlands and significant contributions to global evidence generation, policy development and TB program implementation worldwide.

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