About the Research 

Research Project

Our long COVID research project began as a Canadian Institute for Health Research (CIHR) funded grant in 2021. The purpose of this project is to collaboratively, co-design a ‘Long COVID education and awareness hub’ to help navigate care and rehabilitation access barriers and address the psychosocial implications of LC.

Phase One

2152

Survey responses

52

People with LC interviewed

15

Caregivers interviews

34

Health and social care providers interviewed

 
Long COVID is a ‘novel’ condition that is episodic in nature and presents as a ‘hidden disability’.
 
All stakeholders experience biographical disruptions as a result of Long COVID, causing a loss of agency, indepence, meaning and purpose.
 
There are existing gaps and inequities in the healthcare system that have been exacerbated by the emergence of Long COVID.
 
HSCPs are trying to help but face difficulties as a result of novelty of Long COVID and episodic nature of disability.
 
 
Many provider, organization, and system-level obstacles need to be overcome.

Phase Two

8

Co-design workshops

11

People with LC participated

4

Caregivers participated

9

Health and Social Care Providers participated

During the co-design workshops, we identified meaningful knowledge translation (or KT) outputs that would contribute to increased education and awareness of LC across the care continuum. We then collectively prioritized these KT outputs to identify where our efforts as the research team should be aiming. With LC stakeholders, we identified four areas or ‘pillars’ of support needed for LC education and awareness including Education, Public Health Messaging and Advocacy, Health and Social Care Reform and Integration, and Peer Support
Phase Three

In October 2023 we hosted our LC World Café to introduce and gather feedback on the outcomes of phase I & II of this project.

11 People with LC, 3 Caregivers, and 13 Health and Social Care Providers Participated in the World Café

A Digitally-scribed output from our World Café.