Assessing and reducing stigma in infectious disease outbreaks

Thesis

Stigma is a pervasive challenge in infectious disease outbreaks. It repeatedly hinders outbreak response efforts, deepens socioeconomic divides, and causes lasting harm to affected individuals and communities. Despite this, efforts to monitor and address stigma during outbreaks have often been ad hoc, delayed, or poorly integrated into response planning. This thesis sets out to advance the assessment and reduction of stigma in outbreak contexts by developing tools and recommendations for response teams, including those conducting operational research.

The thesis contains four chapters of original research. Chapter 2 presents a systematic review of the content and psychometric properties of stigma scales used in outbreaks. Chapter 3 reports findings from qualitative interviews with international stakeholders examining how stigma is understood, experienced, and addressed in diverse settings. Chapter 4 includes a cross-sectional community survey conducted in three outbreak contexts (mpox in the UK, Ebola disease in Uganda, and Nipah virus disease in Bangladesh), with these data used to validate new stigma assessment tools. Chapter 5 brings together an evidence review and a structured expert consensus process to develop practical stigma mitigation guidelines for public health actors and response organisations.

The findings demonstrate the value of more structured, evidence-informed responses to stigma. Existing stigma assessment tools were found to lack validity, largely due to scale development and validation processes that are poorly suited to acute outbreaks. A new conceptual model of outbreak-related stigma was developed based on stakeholder interviews spanning 25 outbreak-prone infectious diseases, offering practical insights for considering stigma in response planning. Survey data from over 1000 respondents supported the development of a set of stigma scales that performed well across the three diverse outbreak contexts. Building on these empirical foundations, an international expert panel reached consensus on nine guiding principles and 18 actionable recommendations to support more effective, stigma-sensitive public health responses.

Together, the outputs of this research offer a basis for integrating stigma considerations into outbreak preparedness and response. In doing so, they support efforts to improve the recovery, reintegration, and wellbeing of affected individuals and communities. Future research is needed to explore longitudinal monitoring and evaluate promising stigma reduction strategies now that these are more clearly defined.

Authors: Paterson, AF

• DOI: 10.5287/ora-kq7my6qd8
• Type of award: DPhil
• Level of award: Doctoral
• Awarding institution: University of Oxford
• Language: English
• Keywords: pandemic preparedness; stigma; Nipah virus; scale development; guideline development; discrimination; public health; psychometric validation; infectious disease outbreaks; Ebola; COVID-19; risk communication; health policy; community engagement; mpox; outbreak response
• Subjects: Pandemics; Public health; Social sciences and psychology; Health risk communication; Health attitudes; Epidemics