The goal of this study was to explore the experiences of individuals seeking care for long COVID-19 in the Canadian healthcare system. Recorded virtual interviews were carried out with 8 participants and narrative analysis was used to examine the stories produced and identify the central narratives that defined participants' experiences. Care-seeking experiences were characterized by (1) often debilitating multi-system symptoms for which little information about prognosis was available and no effective treatments were provided, (2) compounded by the frustration of trying to convince family, friends, and health care practitioners of the legitimacy of their illness, (3) access to medical care was severely limited by the global pandemic and associated higher thresholds for care, (4) like others suffering from complex, multi-system conditions, people with long COVID are often struggling with a health-care system ill-suited for dealing with long-term and possibly chronic conditions. To make system-level improvements to better serve those with chronic conditions, it is critical that we understand the care-seeking experiences of chronic illness patients, including the unique experiences of those with long COVID.
Keywords: burden of care; care seeking; chronic illness; long COVID; medical care during a pandemic; narrative analysis.
© The Author(s) 2023.