Report summary

Creating a publicly-led research agenda for Long Covid

Published

This mixed-method approach carried out in Kenya and Malawi sought to better understand how Long Covid affects those living with it as well as the impact on their carers and the healthcare professionals treating the condition. The result is a research agenda outlining priorities to inform the direction of future research.

What’s inside

  • An updated definition of Long Covid that includes both psychological and physical symptoms
  • Publicly-led research questions and priorities that emerged from capturing people’s experience of Long Covid through a combination of qualitative and quantitative research methods
  • Recommendations for future Long Covid research.

Who this is for

  • Funders
  • Researchers
  • Policymakers.

Key findings 

This report utilised interviews with people in Kenya and Malawi living with Long Covid, as well as their carers and the healthcare professionals treating it to uncover key research priorities for Long Covid from the public perspective. This research agenda includes the following:

  • Ten thematic areas were identified as research priorities: headache, chest pain, fatigue, shortness of breath, depression, anxiety, stress, fear, cost of care and stigma.
  • An updated publicly-led definition of Long Covid. Building on the World Health Organization’s definition this report suggests adding in the psychological effects of the condition.
  • Mental health emerged as a critical area worth further exploring in relation to Long Covid due to the social stigma, isolation and financial hardship involved. The challenges of diagnosing the condition also contributed to this as healthcare workers sometimes determined symptoms to be imagined due to inconclusive testing.

There is a need to invest in research to better understand Long Covid and its impacts so therapeutics can be identified for those with the condition. At the same time, findings can also be applied to policymaking as well as patient diagnosis and support.

Downloads 

Contact us 

For more information, please contact Ella Clark, Research & Evaluation Project Lead, Planning and Insights, at E.clark@wellcome.org.

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