Navigating Long COVID: Co-creating research priorities to understand and address the information needs of unpaid care providers in British Columbia

The pandemic has posed significant challenges to people globally. These dynamics have been complicated and prolonged by “Long COVID”, where those previously infected with the SARS-CoV-2 virus continue to experience symptoms for weeks to months after infection. Long COVID also affects unpaid care providers, including family and friends, who care for those with Long COVID. Beyond the many challenges that unpaid care providers face — such as lack of time and resources — the heightened uncertainty around Long COVID poses additional barriers to accessing information and supporting care providers and recipients. Our goal is to begin to address this important issue by convening a group of unpaid care providers, health care professionals (e.g. doctors, nurses), and research scientists in BC. Through knowledge synthesis and convening activities, we will identify priority research areas that will serve as the basis for co-created, collaborative research programs to bridge the gap in care provider access to information and Long COVID resources in the province. With an emphasis on relationship-building and strengthening, we will promote opportunities for continued collaboration among stakeholder groups beyond this proposal.

Team members: Stacey Dawes (Family Caregivers of British Columbia); Julia Smith (Simon Fraser University); Kiffer Card (Simon Fraser University); Anne-Marie Nicol (Simon Fraser University); Gina Ogilvie (UBC); Esther Khor (Provincial Health Service Authority); Niloufar Aran (Simon Fraser University); Alice Murage (Simon Fraser University).