Citation: Jackes, A.; Malfesi, M.;
Curnow, E.; Tyagi, V.; Bulley, C.
Living with and Breaking a Cycle of
Illness: A Secondary Qualitative Data
Analysis of Women’s Experiences
with Long COVID. Women 2022, 2,
161–175. https://doi.org/10.3390/
women2020017
Academic Editor: Mary V. Seeman
Received: 27 April 2022
Accepted: 13 June 2022
Published: 17 June 2022
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Article
Living with and Breaking a Cycle of Illness: A Secondary
Qualitative Data Analysis of Women’s Experiences with
Long COVID
Alison Jackes *, Michael Malfesi, Eleanor Curnow , Vaibhav Tyagi and Cathy Bulley
School of Health Sciences, Queen Margaret University (at Time of Study), Queen Margaret Drive, East Lothian,
Musselburgh EH21 6UU, UK; miker.malfesi@gmail.com (M.M.); ecurnow@qmu.ac.uk (E.C.);
vtyagi@qmu.ac.uk (V.T.); cbulley@qmu.ac.uk (C.B.)
* Correspondence: aejackes@gmail.com; Tel.: +1-250-254-4284
Abstract: Long COVID is an emerging condition, with early evidence suggesting it impacts women at
a greater rate than men. As we seek to understand long COVID, it is important to consider the holistic
impacts of this condition. Therefore, a qualitative perspective was used to explore the experience of
those living with long COVID. Eight people from Scotland, who presented as women and Caucasian,
participated in this study. A thematic analysis, from a phenomenological perspective, was conducted
on data collected during two semi-structured focus groups. Five central themes emerged including:
(1) a prolonged, varied, and debilitating illness; (2) barriers to care; (3) predominantly negative
experiences of care; (4) fighting to carry the burden; and (5) looking to the future. These themes are
linked through an explanatory theory describing a cycle of illness, the work required to break the cycle,
and participant’s aims to regain their health and advocate for their condition. The thematic results
are consistent with two prior qualitative studies on long COVID, creating a relatively consistent
picture of individuals’ experiences during the pandemic. Additionally, the developed theory shares
commonalities with individuals living with chronic illness, providing further insight into participants’
experiences.
Keywords: health; women; qualitative; long COVID; experiences; long-term condition
1. Introduction
As the global pandemic caused by SARS-CoV-2 (the novel coronavirus responsible for
the disease COVID-19) enters its third year, it has become apparent that some individuals
who contract the virus experience persisting illness. This is consistent with the two prior
21st century coronavirus epidemics (SARS and MERS), where some endured physical
and mental sequelae for months or years after illness onset [1]. In May 2020, the first
anecdotal report of prolonged COVID-19 was published, and by June, online communities
of people experiencing this were forming [2]. These groups suggested that focusing on
case numbers and deaths was creating an incomplete picture of COVID-19; it omitted this
chronic condition, which these groups named long COVID [3].
International definitions for long COVID have only recently been developed. The
World Health Organization conducted a Delphi consensus study to establish a clinical case
definition:
“Post COVID-19 condition occurs in individuals with a history of probable or confirmed
SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms
that last for at least 2 months and cannot be explained by an alternative diagnosis.
Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also
others which generally have an impact on everyday functioning. Symptoms may be new
onset, following initial recovery from an acute COVID19 episode, or persist from the
initial illness. Symptoms may also fluctuate or relapse over time. A separate definition
Women 2022, 2, 161–175. https://doi.org/10.3390/women2020017 https://www.mdpi.com/journal/women