Patient Experience Journal (Apr 2023)

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

  • Linda Rozmovits,
  • Michelle Marcinow,
  • Ilja Ormel,
  • Terence Tang,
  • Elizabeth Mansfield,
  • Kerry Kuluski,
  • Seema Marwaha,
  • Susan Law

DOI
https://doi.org/10.35680/2372-0247.1714
Journal volume & issue
Vol. 10, no. 1

Abstract

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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). Access other PXJ articles related to this lens. Access other resources related to this lens.

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