ISARIC researchers have created an explanatory analytical model of stigma during outbreaks, which has been published in Nature’s Scientific Reports.
Stigma, defined as ‘disapproval and discrimination arising from an attribute or association considered socially discrediting’, plays a significant role in shaping the course of new and re-emerging infectious disease outbreaks. Yet, our understanding of how stigma operates in these contexts remains limited. It is often discussed in vague terms or treated as an unavoidable consequence, with little examination of its underlying dynamics or how it might be prevented. This represents a critical gap in our knowledge, with important implications for pandemic preparedness and outbreak response.
To fill this gap in knowledge, the researchers conducted 34 in-depth interviews with key stakeholders across 25 outbreak-prone infectious diseases. These stakeholders included executive and senior leadership from local and international health emergency response organisations, frontline hospital staff, leads of community organisation and advocacy groups, and people with lived experience of diseases from recent outbreaks.
The team recorded and analysed these interviews, discussing emerging themes and subthemes which they then assembled into an explanatory analytical model.
The model, known as the hourglass stigma model, builds on the previously established Health Stigma and Discrimination Framework (HSDF), and comprises of five main domains; context, thoughts, emotions, manifestations, and impact. The model embodies the notion repeated by multiple stakeholders that ‘outbreaks begin and end in communities’. It highlights how social systems are shaped by an outbreak and how these changes then affect attitudes and behaviour in subsequent outbreaks when the ‘hourglass turns’.
Dr Amy Paterson, DPhil candidate and lead author of this study said, “Our intention in developing the hourglass model was for to encourage reflection on stigma and the ways in which we can either contribute to it or prevent it. Currently, these reflections often only occur retrospectively or late in the course of an outbreak.
Our model provides a systematic approach for thinking about stigma in emerging infectious disease outbreaks for those involved in outbreak response planning, policy development, and research.”
The researchers acknowledge that this model will not capture all the intricacies of a social phenomenon as complex as stigma, and that certain factors included in the model may not be relevant across all outbreaks. However, the model provides a framework for researchers to design and implement targeted stigma reduction interventions. This study is part of ongoing work to creating tools for researchers to assess stigma during outbreaks.
