The new RAPID Stigma Scales, led by researchers at the PSI, will help health professionals to monitor stigma in disease outbreak settings, improving outbreak responses globally.
Researchers from the Pandemic Sciences Institute (PSI) have today published a new outbreak-related stigma measurement tool in The Lancet Infectious Diseases.
Developed through work with communities affected by mpox, Ebola, and Nipah, the tool will standardise and speed-up real-time assessment of and response to stigma during infectious disease outbreaks.
Stigma can occur when a person or group is denied full social acceptance because of association with an illness that is considered bad or shameful by others in their society. This can make it harder to control a disease outbreak. Stigma can make people delay seeking medical care, discourage participation in research, and hinder community reintegration. It can also have lasting socio-economic impacts on affected individuals and communities.
Public health professionals are increasingly recognising the importance of addressing stigma when controlling a disease outbreak. However, to date no standardised tool to measure stigma across multiple outbreaks and countries exists, making it difficult for researchers to accurately monitor stigma in different disease outbreak contexts.
Now PSI researchers have co-developed the first ever tool to assess stigma across outbreak contexts, known as (Re)-emerging and EPidemic Infectious Diseases (RAPID) Stigma Scales.
Dr Amy Paterson, PSI DPhil student and leader of the research, said “We’re hoping that having these scales available from the start of an outbreak will support earlier and more rigorous consideration of stigma in future outbreak responses. That’s important—not only for identifying where support is needed—but also for developing effective, respectful, and trusted response measures. In the long term, we hope these tools help make stigma monitoring a routine part of outbreak public health practices.”
Why a new stigma scale is needed
While stigma scales measuring the level of stigma in a community are used routinely for certain diseases such as HIV, existing stigma scales are often disease-specific and applied late in outbreak response efforts. This means they cannot inform outbreak control efforts.
In contrast, the RAPID Stigma Scales have been rigorously designed to enable faster, real-time assessment of stigma across outbreak settings, enabling responders to design targeted interventions to improve health outcomes and promote equitable care.
The RAPID Stigma Scales consist of two scales:
- The Community Stigma Scale captures initial social stigma, provider/authority-related stigma, structural stigma, and enduring social stigma.
- The Self Stigma Scale captures internalised stigma felt by an individual.
Both scales have been developed with robust psychometric properties, ensuring they are valid and reliable.
Developing the RAPID Stigma Scales
To ensure the scales were applicable in different contexts, the study was conducted in close collaboration with Non-Governmental Organisation Walimu in Uganda and research institute icddr,b in Bangladesh.
The scales were co-developed through rigorous field-testing and psychometric validation across three communities and outbreak contexts. A total of 1,008 respondents were included across communities affected by Ebola disease in Uganda, mpox in the UK, and Nipah virus disease in Bangladesh.
Recovered patients and wider community input was integral to the development of the scales, alongside other academic and field experts. This included receiving feedback from community members on the language used, and including people with lived experience as part of the research team.
Dr Hadson Kkunsa, a clinician based in Uganda and community co-investigator on the project, said “The scale we have developed can help greatly to sensitise people about possible stigma during an outbreak. The tool can be used to assess stigma in communities which experience an outbreak, as well as those which do not.
Stigma spares no one – be it the victims, responders, doctors, family members, affected communities and more. Acknowledging stigma and finding solutions would be a big resource in tackling emerging outbreaks.”
Future use of the scales
The RAPID scales are now openly-accessible through the ISARIC website and Lancet Infectious Diseases [link to paper]. They can be used by researchers, practitioners, and policymakers who want to apply validated, transferable tools to assess stigma in real-time during outbreaks.
The adoption of these scales has the potential to strengthen outbreak preparedness and inform future stigma-reduction strategies across diverse infectious disease contexts.
- Read the paper in The Lancet Infectious Diseases
- Find out more about our stigma research
