Collaborators from ISARIC, the Pandemic Sciences Institute (PSI) in the UK, the International Centre for Diarrhoeal Disease Research in Bangladesh (icddr,b) and the World Alliance for Lung and Intensive Care Medicine in Uganda (WALIMU) are developing a set of tools to better understand stigma associated with emerging infectious diseases.
18 April 2024: Stigma happens when a person or group is denied full social acceptance because of association with any condition (such as an illness) that is considered bad or shameful by others in their society. The stigma attached to many infectious diseases poses a formidable challenge in outbreak control. It acts as a barrier to seeking testing and medical care. It can also make healthcare workers less willing to respond [please insert complete statement here]. Despite this, stigma is poorly understood, particularly in the critical initial stages of an outbreak.
Researchers from ISARIC are working with international partners, including the Pandemic Sciences Institute (PSI) in the UK, the International Centre for Diarrhoeal Disease Research in Bangladesh (icddr,b) and the World Alliance for Lung and Intensive Care Medicine in Uganda (WALIMU), to develop a set of tools to better understand stigma associated with emerging infectious diseases.
Addressing lags in stigma assessment
The first step in the development of these tools involved a systematic review, recently published in the CDC journal of Emerging Infectious Diseases. The review examined all existing stigma assessment tools used in infectious disease outbreaks across countries, languages, and disease types.
The authors found a high number of different stigma tools with similar content, but few that had been used more than once, adequately validated, or tested in different diseases or countries. They also found that the tools were first published an average of two years after the first case of a given outbreak.
Author and ISARIC researcher Amy Paterson said: “The results showed us that the model of starting from scratch to build tools for each outbreak is not working for emerging infections. It is too slow despite the best intentions of developers.”
The findings inspired the team to adopt an innovative approach for infectious disease stigma. This involves the rigorous development of stigma assessment tools that are designed with a range of infections in mind and can be rapidly adapted to a wide range of infectious diseases.
An international collaboration
The tools have been co-developed with input from over 60 experts across the globe. These experts have experience in a wide range of infectious diseases and include community members with lived experience of illnesses such as Ebola virus disease, mpox, COVID-19, Nipah virus and Zika virus disease.
In the coming months the assessment tools will be piloted in communities affected by Ebola in Uganda, Nipah virus in Bangladesh, and mpox in the UK. This will help the team establish which adaptations or special modules are necessary for different contexts or diseases.
“While many people think there is nothing we can do about stigma during infectious disease outbreaks, this is not true,” Paterson said. “A lot of stigma can come from the way the health system treats people who have a new disease, and the way public health messages are communicated. These are things we can and should do something about. This includes thinking about the language we use, and involving people with lived experience in decision making. Having a robust way to assess stigma from early in an outbreak can make us more aware of stigmatising practices and inform interventions.”
You can read more about the need for a transferable stigma assessment tool here and the systematic review here.
Researchers working on outbreak-associated stigma at ISARIC have also launched an mpox stigma survey to learn more about public sentiment around stigma. UK residents who are over 18 years of age can participate in this survey here.
