“We’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms
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* Donna Goodridge
* Thomas N. Lowe
* Shuang Cai
* Flinn N. Herriot
* Rachel V. Silverberg
* Michael Heynen
* Kelly C. Hall
* Jaimie Peters
* Scotty Butcher
* Taofiq Oyedokun

## Abstract

**Background** The “long tail” of the COVID-19 pandemic will be reflected in disabling symptoms that persist, fluctuate or recur for extended periods for an estimated 20%–30% of those who had a SARS-CoV-2 infection; development of effective interventions to address these symptoms must account for the realities faced by these patients. We sought to describe the lived experience of patients living with persistent post-COVID-19 symptoms.

**Methods** We conducted a qualitative study, using interpretive description, of the lived experiences of adults experiencing persistent post-COVID-19 symptoms. We collected data from in-depth, semistructured virtual focus groups in February and March 2022. We used thematic analysis to analyze the data and met with several participants twice for respondent validation.

**Results** The study included 41 participants (28 females) from across Canada with a mean age of 47.9 years and mean time since initial SARS-CoV-2 infection of 15.8 months. Four overarching themes were identified: the unique burdens of living with persistent post-COVID-19 symptoms; the complex nature of patient work in managing symptoms and seeking treatment during recovery; erosion of trust in the health care system; and the process of adaptation, which included taking charge and transformed self-identity.

**Interpretation** Living with persistent post-COVID-19 symptoms within a health care system ill-equipped to provide needed resources profoundly challenges the ability of survivors to restore their well-being. Whereas policy and practice increasingly emphasize the importance of self-management within the context of post-COVID-19 symptoms, new investments that enhance services and support patient capacity are required to promote better outcomes for patients, the health care system and society.

Pandemics leave “long tails” in their wake — substantial numbers of survivors likely to experience high levels of symptom burden and disability, decreased quality of life, high rates of health care utilization, potentially reduced life expectancy1,2 and reduced economic productivity. According to a recent large study using electronic health record data of American adults,3 nearly 1 in 5 COVID-19 survivors aged 18–64 years and 1 in 4 survivors aged 65 years or older experienced at least 1 incident condition that could be attributable to previous SARS-CoV-2 infection. These results are consistent with findings of other studies that found that post-COVID-19 incident conditions occur in 20%–30% of survivors.4,5 A systematic review reported the most common among the more than 60 physical and psychological post-COVID-19 symptoms with wide prevalence were weakness (41%), general malaise (33%), fatigue (31%), concentration impairment (26%) and breathlessness (25%),6 with similar trends reported in another systematic review by Han and colleagues.7

Increased susceptibility to persistent symptoms may be driven by the unique health and social characteristics of particular populations, such as racial and ethnic minorities, those experiencing complex clinical conditions, older age groups and rural residents.8 Economic barriers (e.g., health care expenses and interference with ability to work), geographic barriers (e.g., living in medically underserved or geographically distant areas), precarious housing, and employment as an essential worker or in close proximity to other workers have been noted as potential contributors to health inequity in post-COVID-19 syndrome.9

The personal, health care, economic and societal impacts resulting from post-COVID-19 symptoms will become increasingly apparent as the numbers of people affected rise. Disability is anticipated to account for most of COVID-19’s burden and to disproportionately affect women, especially those who were infected at a young age.10 Mental health sequelae, including posttraumatic stress disorder, anxiety and depression, have been reported to be comparable in frequency in both previously hospitalized and nonhospitalized people post-COVID-19.11 A large cohort study12 found that the risk gradient for excess health care burden post-COVID-19 increased with the acuity of the initial setting of care, with intensive care admissions being the highest risk. Patients with COVID-19 had an increased risk of requiring outpatient care beyond 30 days of COVID-19 diagnosis (estimated excess burden: hazard ratio 33.22 [95% confidence interval 30.89–35.58] per 1000 patients). Up to 22% of people with post-COVID-19 symptoms (also known as long COVID) reported being unable to work owing to ill health, and 45% were forced to reduce the hours worked.13 Recent testimony to the US government estimated that the workforce effects of post-COVID-19 symptoms were equivalent to 3.3 million Americans leaving their full-time job.14

The experiences of people living with post-COVID-19 symptoms are an important source of information that can inform clinical interventions and professional education. A qualitative systematic review of 5 studies15 found that people living with post-COVID-19 symptoms experience a variety of physical and emotional consequences and that greater knowledge of post-COVID-19 symptoms was required by stakeholders. The aim of this study was to describe the lived experiences of people with persistent post-COVID-19 symptoms.

## Methods

We conducted a qualitative study, using interpretive description, of the lived experiences of individuals experiencing persistent post-COVID-19 symptoms. Interpretive description reflects the epistemology of constructionism, with meanings and experiences considered to be socially produced and reproduced through subjective and intersubjective construction.16 Whereas we primarily adopted an inductive (data-driven) approach to coding and analysis, our work was informed by several theoretical lenses, in keeping with Braun and Clarke’s guidance.17,18 We considered sociological perspectives on chronic illness, including burden of treatment,19 biographical disruption20 and loss of self,21 as well as Robinson’s framework on trust, health care relationships and chronic illness.22

### Participants and recruitment

We drew a convenience sample of people with persistent post-COVID-19 symptoms who had participated in a separate app-based COVID-19 survey and had consented to be contacted about other studies. The aim of the app-based survey was to describe the self-reported symptoms, functional status, treatment-seeking and satisfaction with treatment of individuals with persistent post-COVID-19 symptoms over a period of 1 year.

Recruitment occurred in February 2022. We sent 124 consenting survey participants an email invitation to participate in the focus groups. Individuals eligible to participate in the focus groups were English-speaking adults reporting 1 or more persistent post-COVID-19 symptom for a period of 3 months or more.

All participants received instructions on using Zoom and troubleshooting standard technical issues. Online data collection provided the opportunity to engage with participants in different geographic locations across Canada and reduced the burden of travel to interview sites for participants who had already engaged in the online survey and had demonstrated access to technology. At each focus group, a dedicated virtual “room” was provided in which the research assistant (K.C.H.) could debrief with any participant who chose to take a break from the discussion. No participants chose to use this service.

We followed the Consolidated Criteria for Reporting Qualitative Research.

### Data collection

We constructed a semistructured interview guide (Appendix 1, available at [www.cmajopen.ca/content/11/3/E504/suppl/DC1](http://www.cmajopen.ca/content/11/3/E504/suppl/DC1)) based on our clinical experience and prior discussions with people experiencing persistent post-COVID-19 symptoms. We identified additional probes to supplement the primary questions through a review of the academic literature and a scan of national and international “long hauler” websites. The interview guide was pilot-tested with 2 community-based volunteers with persistent post-COVID-19 symptoms to assess the clarity and flow of questions, identify potential technical issues and ensure acceptability of the questions to participants, with no substantial changes suggested. Data from the pilot test were not incorporated in the final analysis. Demographic data and consents were collected 3 to 7 days before each focus group. A list of free online mental health resources was provided to all participants at the time of consent.

Because of the degree of detail provided and the duration of participant responses in the pilot-testing phase, and to minimize the burden of online interaction for individuals who were likely to be easily fatigued, we aimed for 3 to 7 participants for each focus group.

The focus groups were held between Feb. 20 and Mar. 17, 2022, and were cofacilitated by D.G. (female nurse researcher) and 1 other health professional researcher (J.P., female nurse; T.O., male physician; or S.B., male physiotherapist researcher) with technical assistance from K.C.H. and B.D. Coauthors D.G., K.C.H. and S.B. received training in focus group facilitation through their doctoral studies. D.G., J.P., T.O. and S.B. have experience facilitating focus groups with patients living with chronic illness from previous studies. Individual meetings between D.G. and cofacilitators occurred before the focus groups to review the protocol and ensure a shared understanding of focus group methodology. Participants in the focus groups were encouraged to tell their stories to the extent they felt comfortable. Field notes were kept by K.C.H. Each focus group lasted 90 minutes and was audio-recorded, professionally transcribed and checked for accuracy.

The 10 focus groups generated more than 200 pages of transcripts, yielding rich, high-quality data. The facilitators agreed that consistent themes were evident across the focus groups, thus addressing the criteria of data saturation.23 As the key strategy to promote transferability,24 the “thick description” that characterizes our data provides insights about participants’ behaviour, emotions and context. “Thick description” facilitates readers’ judgment regarding transferability of the findings to their own context.24

### Data analysis

Data analysis was conducted after completion of all focus groups. Data were entered into NVivo software and analyzed using reflexive thematic analysis,18 informed by interpretive description.16 Five medical students (S.C., F.N.H., M.H., T.N.L. and R.V.S.) received intensive training in thematic analysis and interpretive description, coding and use of NVivo software from D.G. The team of students met for 2 hours weekly with D.G. and K.C.H. for 10 weeks. We kept detailed meeting notes of the discussions and the decisions taken at each meeting as part of the audit trail. After the entire team had read, line by line, the 200 pages of transcripts from all 10 focus groups, 2 gender-balanced pairs (S.C. and F.N.H., and T.N.L. and R.V.S.) met to identify semantic (explicit or surface meanings of the data) and latent (meanings, underlying assumptions, ideas or ideologies) 17,24 codes from 5 transcripts each, which were then discussed in depth at the weekly meetings. The next stage, generating themes, involved the review and organization of codes into themes reflecting aggregated meanings and meaningfulness across the data set agreed on by the team. The associations between data items and codes informing candidate themes were reviewed to ensure the codes formed a coherent pattern.

All focus group participants were invited to participate in member-checking. Five individuals volunteered, but 2 felt unwell on the day of the first member-checking session and decided they could not participate. Three focus group participants met with the coding team to provide feedback on the preliminary themes, which were refined based on the participants’ comments.

The relations between the candidate themes and the data set were evaluated at our weekly meetings to determine how well they provided an accurate interpretation of the data set. We then examined each data extract in relation to its constituent theme to ensure that we had captured the diverse expressions of meaning and to ensure coherence of the data extract within the theme. We had a second member-checking meeting with the same focus group participants who participated in the first session, along with another of the original volunteer participants, to establish the fit between the respondents’ views and the researchers’ representation of their views.25 Credibility was operationalized though this process of member-checking. The themes were then presented to an interdisciplinary team of health professionals interested in post-COVID-19 condition to solicit further commentary and peer debriefing. Appendix 2 (available at [www.cmajopen.ca/content/11/3/E504/suppl/DC1](http://www.cmajopen.ca/content/11/3/E504/suppl/DC1)) describes the strategies used to ensure criteria for rigour were met.

### Ethics approval

The study was approved by the Behavioural Ethics Committee of the University of Saskatchewan (BEH No. 2975). Prospective participants were emailed a copy of the consent form, which was reviewed in detail during a telephone call before obtaining witnessed verbal consent.

## Results

We sent an email invitation to 124 consenting survey participants in February 2022, and 54 individuals responded. Nine respondents declined participation because the 90-minute online focus group would be too taxing, and 4 were not available at the time of the focus groups. Forty-one participants from 8 Canadian provinces participated in 1 of the 10 virtual focus groups held in late February and March 2022 using Zoom technology. The participant characteristics are described in Table 1. Focus groups included between 3 and 6 individuals who self-selected the session attended based on their personal schedules. All focus groups lasted 90 minutes.

View this table:
[Table 1:](http://www.cmajopen.ca/content/11/3/E504/T1)

Table 1: 
Participant characteristics

We identified 4 overarching themes from the data: the unique burden of living with persistent post-COVID-19 symptoms; the complex work of seeking treatment; the erosion of trust in health care; and the evolving process of adaptation to new realities.

### The unique burden of living with persistent post-COVID-19 symptoms

“My body felt so incredibly terrified, right? It’s like my body had PTSD.” (F1) Living through the acute infection was a traumatic and clearly recollected experience, although participants reported relief at sharing their journeys in the supportive environment of the focus group. “To hear other people’s experiences … is healing … there is importance in being able to share those experiences.” (F1)

Participants reported a wide array of new and debilitating physical, emotional and cognitive post-COVID-19 symptoms that profoundly affected function and quality of life. Whereas some symptoms had partly or fully resolved, all participants reported 1 or more ongoing, fluctuating or recurring symptoms. Representative quotations describing the nature of frequently reported symptoms are in Table 2, and the impacts of symptoms on participants’ personal lives are highlighted in Table 3. Financial hardships resulting from time away from jobs figured prominently across all focus groups. The suffering and life-altering repercussions of these symptoms were summarized by 2 participants: “The sad thing is I can’t even function at home, let alone think about going back to work … . It sounds so ridiculous and almost embarrassing, but it’s insane how much it takes out of a person to do the littlest things.” (F2) and “The overwhelming feeling that all of us have is that we miss our life.” (F6)

View this table:
[Table 2:](http://www.cmajopen.ca/content/11/3/E504/T2)

Table 2: 
Description of frequently reported post-COVID-19 symptoms

View this table:
[Table 3:](http://www.cmajopen.ca/content/11/3/E504/T3)

Table 3: 
Impacts of living with persistent post-COVID-19 symptoms

The persistent and apparently inexplicable nature of many post-COVID-19 symptoms engendered feelings of uncertainty and fear. Some participants voiced concern about their long-term implications: “COVID basically did permanent damage, so I don’t know, should I push? Should I not push? I don’t know what I should do.” (F9) and “Will this shorten our lifespan, or what are we looking at in the future? Are … we going to be disabled?” (F3)

Participants often felt stigmatized and isolated during both the initial infection and afterwards. “I felt like I was treated like we were antivaxxers ‘cause we got COVID.” (F4) Some workplaces created additional psychological burden. “You get looked at when you come back [to work] and you get looked at when you leave, because people are, ‘Well, are they really sick or what’s going on? Are they [just] taking some time off?’” (F1)

### The complex work of recovering from persistent post-COVID-19 symptoms

Given the intensity and complexity of symptoms experienced, participants required a high degree of personal agency to undertake the work of recovering from their post-COVID-19 symptoms, which was influenced by personal, systemic and societal factors. Strong support networks during the recovery journey mitigated the stresses of managing symptoms and seeking treatment, although issues such as caregiving responsibilities, costs and managing comorbidities added to overall burden. Self-advocacy was a critical, but taxing, component of the work undertaken by these participants. “It’s hard for long COVID patients to speak up … it’s hard for us to advocate for ourselves.” (F6) Many participants described the frustration of having their symptoms discredited by others. “I want to be believed by my doctor. I want to be believed by my employer. I wish more people were aware of it. Instead, people are being gaslit. I think is the big thing moving forward is to be believed.” (F1) Table 4 describes factors that affected the ways in which participants managed their efforts to recover.

View this table:
[Table 4:](http://www.cmajopen.ca/content/11/3/E504/T4)

Table 4: 
Factors affecting the complex work of recovering from persistent post-COVID-19 symptoms

Difficulties in negotiating with employers and insurers to access benefits seriously complicated the work of recovery, particularly for those without confirmation of a positive COVID-19 diagnosis. Participants frequently described out-of-pocket expenses for therapies, navigating complex paperwork, and denial of benefits. In spite of these challenges, many were motivated to independently seek rehabilitation services, particularly physiotherapy, as well as complementary medicine, through private clinics, sometimes out of province.

The general public was perceived to neither understand nor appreciate the realities associated with living with persistent post-COVID-19 symptoms. Government policies, particularly around access to information about rates of COVID-19 and the end of mandatory masking, were sources of frustration and anxiety that complicated patient work to regain health. Participants voiced concern about the ongoing dismissal of physicians’ concerns and expertise by governments. “The government just does not trust our medical community and I don’t know why.” (F7)

### Erosion of trust in health care

Participants were extremely grateful for their positive experiences with the health care system and their providers — “My family doctor is amazing and, honestly, was like the rock that has gotten me through this.” (F8) For others, however, negative experiences shook their foundational beliefs about the ability of science to diagnose and cure, and the capacity of the health care system to care. The implications of systemic issues such as long wait times and lack of access to primary care were often magnified for those living with debilitating and unexplained post-COVID-19 symptoms. A multitude of systemic (Table 5) and health care provider and relational (Table 6) factors challenged participants’ ability to navigate and negotiate the services they felt they required, and generally eroded the level of trust in the health care system and health care providers. Participants did not know where to turn for help when the health care system proved unresponsive. “I will not go back unless I think that I’m dying. Cause they won’t do anything.” (F4) “I don’t want to go back to this doctor now because I don’t trust her ability to figure out what’s wrong with me.” (F8)

View this table:
[Table 5:](http://www.cmajopen.ca/content/11/3/E504/T5)

Table 5: 
Systemic factors contributing to erosion of trust in health care

View this table:
[Table 6:](http://www.cmajopen.ca/content/11/3/E504/T6)

Table 6: 
Health care provider and relational factors contributing to erosion of trust

In spite of debilitating symptoms, the failure of diagnostic tests to provide objective evidence of treatable disease for some participants further eroded trust. “I’ve been to a multitude of specialists and doctors, and they say, ‘Everything is normal from what we can see. We don’t know what to do with you’ … then why do I feel the way I feel?” (F9) In spite of sometimes being unable to provide conclusive answers, physicians who were attentive, responsive and caring were highly valued. “The most important thing that the health care or health care in general can provide for me … is actually not competence or knowledge, it’s … humility.” (F4)

### Process of adaptation

“We were navigating a path that we never intended to take, a journey we never intended to embark on.” (F5) The journey of living with often unpredictable post-COVID-19 symptoms evolved for many into an ongoing process of adaptation (Table 7), frequently characterized by grieving losses, an uncertain future, living with relapses, the development of new self-care strategies, a growing acceptance of new realities and limitations, and transformed self-identities. A pivotal moment in the process of adaptation proved to be recognizing the need to take charge. “What I’ve found is that there’s really nothing they can do for you, if the damage is there. How are they going to fix it? They can’t. You have to do that by yourself, and it does take a multitude of different things.” (F9) Participants found new courage to be their own advocates in the face of ongoing symptoms.

View this table:
[Table 7:](http://www.cmajopen.ca/content/11/3/E504/T7)

Table 7: 
The process of adaptation to living with post-COVID-19 symptoms

Hope, for some participants, was found in small, but promising, milestones that pointed to recovery. Resilience was fostered by drawing on optimism and gratitude for what remained.

## Interpretation

We identified key aspects of the lived experience of adults in Canada living with persistent post-COVID-19 symptoms. The key contribution of this study is the in-depth characterization of the many ways in which post-COVID-19 symptoms test the capacity of individuals to manage and recover from their illness over a protracted period (average of 15 months post–acute infection), including key insights into the process of adapting to living with an unpredictable and uncertain illness trajectory. Given the anticipated “long tail” of the COVID-19 pandemic, societies will need to address the profound physical, psychological, social and economic impacts on those with post-COVID-19 symptoms for years to come.

Participants, most of whom continued to experience persistent symptoms more than a year after their acute SARS-CoV-2 infection, clearly articulated the multiple ways in which these symptoms dominated and transformed their lives. Fear and uncertainty about the implications of their symptoms were exacerbated by limited scientific evidence and by shortcomings of systems that were themselves challenged on multiple fronts.

The burden of treatment described by May and colleagues19 results from demands on patients to organize and coordinate their own care and to manage escalating arrays of health care–related tasks. The patient work involved in attempting to secure diagnoses and treatment for post-COVID-19 symptoms was complicated by the need to self-advocate for services at a level unusual for most other conditions, and at a time when health services were already strained. Burden of treatment increases when patients are not highly skilled at assembling and using collective resources.19 With functional performance already constrained by persistent symptoms, the burden of cognitive and practical tasks required to regain health was often overwhelming. Participants’ calls for a more fully informed and supportive health care system are supported in a qualitative systematic review of living with long COVID.15

The conceptual tool of biographical disruption20 is useful for unpacking the multiple impacts of persistent post-COVID-19 symptoms and the process of adaptation reported by participants. As the onset of illness fundamentally ruptures the patterns and assumptions that structure daily life and create personal coherence, this theory contends that individuals are forced to deal with these disruptions, consciously consider their life trajectory and mobilize novel resources to cope with the chaos.19 These patterns were evident in the descriptions of how participants adapted to their altered circumstances, which reflect the course of adaptation to chronic illness described by Gignac and colleagues:26 compensating for losses, optimizing performance, limiting or restricting activities, and seeking help from others.

Erosion of trust in health care may be especially important within the context of persistent post-COVID-19 symptoms, in which there may be enhanced vulnerability, uncertainty about outcomes, and reliance on health care providers over extended periods.27 Patient trust is dynamic and relational,27 based on expectations that the health care system and providers demonstrate knowledge, skill and competence, as well as behaving in the patient’s best interest with integrity, fairness and beneficence.27 When patients perceive discrepancies between these expectations and the care they receive, trust in the health care system as a whole can be eroded.28

Our study is unique in that our Canadian participants had lived with post-COVID-19 symptoms for an average of 15 months, in contrast to other studies,29,30 where symptoms had been present for much shorter time frames, at an earlier stage in the pandemic and when health care services may have been more compromised. We have demonstrated that the long-term burden of living with post-COVID-19 symptoms can continue well beyond the first months of recovery and can result in undesired, substantive personal and occupational accommodations that have substantial implications for well-being. Although multiple challenges with access to and quality of services for persistent post-COVID-19 symptoms had been reported by these studies,29,30 these issues have remained largely unaddressed for our participants within the Canadian context. The themes reported in a patient-led thematic analysis31 of 66 stories submitted online in 2020 included the life-changing impact of the condition, the importance of validation and seeking alternatives as the only option. Our study builds on these themes to include the erosion of trust in health care and process of adaptation. Avoiding key methodological issues identified by MacPherson and colleagues,15 we had no previous relationships with participants that may have introduced bias, did not compensate participants and ensured all transcripts were complete.

The findings of our study point to the need for new and targeted investments to better address the needs of those with persistent post-COVID-19 symptoms. The creation of voluntary patient registries that are co-designed with patients could serve a dual purpose of service improvement and research.32 In addition, these registries would allow for long-term follow-up and greater understanding of both long-term socioeconomic implications and population health.32 Increased awareness of the post-COVID-19 condition through public and professional education, as well as the development of supports for patient advocacy within workplaces and institutions, will be foundational to improving outcomes for people with persistent post-COVID-19 symptoms.

### Limitations

Limitations of our study include the convenience sample of Canadian adults who had consented to be contacted about future studies in a longitudinal, English-only, app-based survey on COVID-19 with recruitment through social media, support groups and media coverage. Because we did not include non-English-speaking individuals and those without access to or comfort with technology, there may be additional themes that reflect the lived experiences of these populations. Factors such as ethnic background, complexity of clinical conditions, rural or urban origin, geographical distance, housing, income and pre-existing health inequities could not be related to our findings. Most participants were of middle age, and experiences of younger and older adults were not fully captured. Because two-thirds of our participants were female, the perspectives of males with persistent post-COVID-19 symptoms may require future elaboration. The virtual nature of the focus groups may have altered the interactions between participants. Because the focus groups were audio-recorded, but not video-recorded, we were not able to attribute quotations to individuals. This limited the ability to establish relations between participant characteristics and their responses.

### Conclusion

Living with persistent post-COVID-19 symptoms within a health care system ill-equipped to provide needed resources profoundly challenges the skills and abilities of survivors to restore their well-being. Whereas policy and practice increasingly emphasize the importance of self-care and self-management within the context of post-COVID-19 symptoms, new investments that enhance services and support patient capacity are required to promote better outcomes for patients, the health care system and society.

## Acknowledgements

The authors are grateful for the generosity of the participants who shared their stories and participated in the interpretation of data. They appreciate the feedback provided by colleagues within the Sask Long COVID Research Group, University of Saskatchewan: Alyson Kelvin, Nathaniel Osgood, Gary Groot, Josh Lawson, Mark Fenton, Marvi Baloch, Amanda Zimmerman, Ethan Jansen, Jill Hubick and Trent Litzenberger. Thank you to Britney Duncan for technical support and assistance. The authors acknowledge the professional transcription services provided by the Canadian Hub for Applied and Social Research at the University of Saskatchewan. They also thank the reviewers for their thoughtful comments.

## Footnotes

*   **Competing interests:** None declared.

*   This article has been peer reviewed.

*   **Contributors:** Donna Goodridge conceived the study. Donna Goodridge, Kelly Hall, Taofiq Oyedokun, Scotty Butcher and Jaimie Peters conducted the focus groups. Shuang Cai, Flinn Herriot, Thomas Lowe and Rachel Silverberg contributed equally to coding the data, with ongoing guidance from Donna Goodridge, Kelly Hall and Michael Heynen. All authors contributed to the interpretation of the data. Donna Goodridge drafted the manuscript and all authors revised it critically for important intellectual content, gave final approval of the version to be published and agreed to be accountable for all aspects of the work.

*   **Funding:** The project was funded by the Respiratory Research Centre, College of Medicine, University of Saskatchewan.

*   **Data sharing:** The participants of this study did not give written consent for their data to be shared publicly, so owing to the sensitive nature of the research, data are not available for sharing.

*   **Supplemental information:** For reviewer comments and the original submission of this manuscript, please see [www.cmajopen.ca/content/11/3/E504/suppl/DC1](http://www.cmajopen.ca/content/11/3/E504/suppl/DC1).

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY-NC-ND 4.0) licence, which permits use, distribution and reproduction in any medium, provided that the original publication is properly cited, the use is noncommercial (i.e., research or educational use), and no modifications or adaptations are made. See: [https://creativecommons.org/licenses/by-nc-nd/4.0/](https://creativecommons.org/licenses/by-nc-nd/4.0/)

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