Living with COVID-19 in the community during the first wave of the pandemic: Lessons from patients for healthcare providers and policy makers

Linda RozmovitsFollow
Michelle Marcinow, Trillium Health PartnersFollow
Ilja Ormel, St. Mary's Research CentreFollow
Terence Tang, Trillium Health PartnersFollow
Elizabeth Mansfield, Trillium Health PartnersFollow
Kerry Kuluski, Trillium Health PartnersFollow
Seema Marwaha, Unity HealthFollow
Susan Law Dr, University of TorontoFollow

Abstract

This qualitative descriptive study explores patients’ experiences of living with COVID-19, in the community, during the early stages of the pandemic. Between October 2020 and April 2021, fifteen semi-structured, video-recorded interviews were conducted, via Zoom, with participants in five Canadian provinces. Participants self-identified as having had a confirmed or suspected case of COVID-19. The constant comparative method was used to produce a thematic analysis of findings. Key findings include 1) PCR tests were not widely available in Canada, during the first wave, so many participants lacked a confirmed diagnosis and, subsequently, encountered challenges accessing specialist medical care; 2) Rapidly changing protocols around testing also impacted return to work as employers’ requirements were sometimes misaligned with public health guidelines; 3) Participants often found public health measures to be illogical, inconsistent, or sub-optimally implemented, and frequently perceived them as politically motivated rather than evidence-based; 4) some individuals with persistent symptoms had difficulty gaining acknowledgement and support for what is now more widely acknowledged to be long-COVID; and 5) The view that healthcare providers need a more nuanced approach to patients who lack a confirmed diagnosis or present with hard-to-explain symptoms was widely shared. There is the need for greater responsiveness to the lived experiences of patients with COVID-19, especially those with persistent symptoms, in developing clinical pathways and social supports.

Experience Framework

This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework).

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Recommended Citation

Rozmovits L, Marcinow M, Ormel I, Tang T, Mansfield E, Kuluski K, Marwaha S, Law S. Living with COVID-19 in the community during the first wave of the pandemic: Lessons from patients for healthcare providers and policy makers. Patient Experience Journal. 2023; 10(1):115-123. doi: 10.35680/2372-0247.1714.