Research team launches resource for long COVID education and awareness
A collaborative research team, led by scientists from St. John’s Rehab Research Program at Sunnybrook Research Institute, recently unveiled a new resource to spread awareness about the realities of living with long COVID. The website, www.LivingWithLongCovid.ca, aims to educate, provide peer support, and help advocate for more resources for those living with the condition.
According to the World Health Organization, long COVID is the continuation or development of new symptoms three months after the initial COVID-19 acute infection, lasting for at least two months with no other explanation. Common symptoms include extreme exhaustion, difficulty breathing, neurological problems, heart palpitations, chronic pain and brain fog. There are still no validated clinical tests, treatments or cures for the condition, which underscores this community’s need for resources and supports that can help them navigate life with long COVID.
“Up to 35 per cent of people who have had COVID-19 or around 1.6 million Canadians can develop long COVID. Long COVID is an invisible illness to many, which can lead to feelings of isolation, stigma and a lack of support,” says Dr. Marina Wasilewski, primary investigator on the project and a scientist in the St. John’s Rehab Research Program. “Our goal with the project was to explore the social and mental health impact long COVID has on patients and families and to create a resource that helps to address these factors.”
The Long Covid Education and Awareness Hub, which includes educational materials, a directory of resources and a five-part docuseries about living with long COVID, is one output of a multi-phase research project that began in 2021 consisting of surveys, interviews, co-design workshops, and a world café to gather broad feedback on the outcomes of the initial phases of the project. The research was uniquely co-designed by an interprofessional group of researchers, allied health professionals and people with lived experience, to create a person-centered resource, reflective of the needs of the long COVID community.
“Being in an environment with other patients, researchers, caregivers, and medical professionals who believed me and wanted to understand my experience was so healing for me,” says Jeni Minion, one of the patient collaborators on the project. “Through the workshops I began to learn to accept that while our prognosis is open ended, I was actively harming myself by trying to "push through." I needed to manage my expectations. In watching the Living with Long Covid docuseries, I saw so much of my own struggles in the words of Beth, Jeff, Mandy, and of course as a single mom myself, Susie.”
For the research team, they’re looking forward to sharing the hub with other people with long COVID, policy makers, health-care professionals and the broader public.
“COVID isn’t dominating the headlines or changing our everyday lives as much as it did five years ago, but its effects are still impacting many. Our aim is to reflect the harsh realities of long covid and what it means for people’s lives.” says Dr. Wasilewski. “We’re hoping to also make others feel less alone and share that there is lots of research and advocacy for long COVID underway — there is light at the end of the tunnel.”
This research was funded with support from the Canadian Institutes for Health Research (CIHR) and the Rehabilitation Science Research Network for COVID.
