Participant Characteristics
We completed 56 interviews. Table 1 outlines participant characteristics. Participants primarily identified as female (60.7%). Our sample ranged from 20 to 74 years of age with a mean (standard deviation) age of 49.29 years (13.04). Twenty-one (37.5%) participants had pre-existing conditions including asthma, multiple sclerosis, and diabetes. The majority (76.8%) were from urban or suburban centers. Participants had diverse education and occupational backgrounds. Some were in front-line positions during the pandemic (e.g., healthcare, education, trades). Others were either in non-front-line positions (e.g., home maker), were unemployed, retired, or chose not to disclose their employment status.
Themes
While interviews were planned to focus solely on rehabilitation, most participants wanted to provide the full context of their COVID-19 journey. Therefore, all health interactions were discussed, which provided a broad picture of participants’ experiences of the virus and their journey to access and navigate Long COVID care.
Three key themes were generated: (a) Riding the Long COVID Rollercoaster; (b) Transitioning from Symptoms to Services – (In)Ability to Access Care; and (c) Improving the Quality of Long COVID Services by Illuminating Key Lessons. The relationships between these themes and corresponding sub-themes are depicted in Fig. 1.
Theme A: Riding the Long COVID Rollercoaster
In theme (a), participants spoke about the relapsing-remitting, “rollercoaster”-like nature of their Long COVID symptoms and the resulting impact on functioning, disability, and health. As expected, the ongoing symptoms participants’ experienced were highly diverse: “it affects everybody […] to different extents and everybody has different symptoms, which is really hard because it's just a myriad of symptoms” (female participant, private clinic). However, some common symptoms were mentioned including: fatigue or exhaustion, dyspnea, cognitive impairment, tachycardia, chest pain, body and joint pain, and headaches.
Table 1
Study sample demographic characteristics by recruitment site and in total.
|
Recruitment Site
|
|
|
Public Long COVID Clinics
|
BreatheWell Physiotherapy
|
Rehabilitation Advice Line
|
Workers’ Compensation Clinic
|
News Article Recruitment
|
TOTAL
|
Gender
|
Male
|
5
|
1
|
4
|
5
|
7
|
22
|
Female
|
9
|
8
|
4
|
9
|
4
|
34
|
Mean Age
|
50.6 years (min 20; max 74)
|
51.0 years (min 34; max 69)
|
52.1 years (min 35; max 74)
|
51.8 years (min 37; max 63)
|
40.0 years (min 24; max 67)
|
49.3 years
|
Mean Interview Length
|
42.2 minutes
|
61.0 minutes
|
57.1 minutes
|
56.8 minutes
|
46.1 minutes
|
52.6 minutes
|
Rural/Urban
|
Rural
|
6
|
2
|
2
|
1
|
2
|
13
|
Urban/ Suburban
|
8
|
7
|
6
|
13
|
9
|
43
|
Ethnicity
|
White
|
9
|
8
|
7
|
9
|
9
|
42
|
Ethnic Minority
|
5
|
1
|
1
|
5
|
2
|
14
|
Vaccination Status at Time of Infection
|
Unvaccinated
|
13
|
9
|
7
|
11
|
10
|
50
|
One Dose
|
0
|
0
|
0
|
3
|
1
|
4
|
Undisclosed
|
1
|
0
|
1
|
0
|
0
|
2
|
Alberta COVID-19 Wave Where Participant Was Infected40
|
Wave 1 (March 2020 to June 2020)
|
0
|
7
|
3
|
1
|
1
|
12
|
Wave 2 (July 2020 to February 2021)
|
11
|
2
|
3
|
11
|
6
|
33
|
Wave 3 (March 2021 to June 2021)
|
3
|
0
|
2
|
2
|
3
|
10
|
Wave 4 (July 2021 to December 2021)
|
0
|
0
|
0
|
0
|
1
|
1
|
The uncertain and unstable trajectory of symptoms affected each participant’s level of functioning and health differently. Participants were left feeling like “a shell of the person [they] used to be” (female participant, public clinic) and as if they were experiencing “paranoia over not knowing [their] own body” (male participant, recruited through news article).
Impact on Function.
Activities of Daily Living (ADLs). Prior to COVID-19, most participants were not experiencing any functional challenges. With Long COVID, participants reported that attempting ADLs would oftentimes exacerbate symptoms and were avoided, if possible. Basic ADLs (e.g., mobility and person hygiene activities) and instrumental ADLs (e.g., cleaning, home maintenance, and cooking and meal preparation) requiring more physical and cognitive exertion were identified as most challenging. Many participants used strategies to manage their energy when completing ADLs such as pacing, energy or activity management, taking frequent breaks, or only focusing on one activity a day, while some needed to use newly acquired assistive devices (i.e., stool, walker, cane) to function independently. Some participants required assistance from friends or family or accessed paid services to help manage ADLs, particularly related to household activities, cooking, and shopping. This left them feeling “like a burden” because they could not “do a lot around the house” (male participant, Workers’ Compensation).
“[…] I really have to pick and choose like am I going to do laundry today and is that the only thing I'm going to be able to do today or am I going to do this today? So I really have to limit […] my choices […] and [I] just keep falling further and further behind in [my] daily life” (male participant, recruited through news article)
Work. The “rollercoaster” of symptoms had a notable impact on participants’ ability to work. Some participants were not working prior to infection due to living with a pre-existing disability or being retired. For those who were able to return-to-work, some had supportive employers who offered gradual and flexible return-to-work plans and/or modified duties. In these instances, the return-to-work process was reported as positive and most often successful. Those without an accommodating employer or who could not perform their previous job duties often had to look for alternative work environments or stop working altogether. Almost half of participants found themselves unable to work due to ongoing symptoms which snowballed into feelings of uncertainty or worry about the future.
“I’m still nowhere from being able to return-to-work which is really hard to deal with. I loved my job and I really […] hoped that I could return to it, but I’m not sure […] that is going to be a reality for me […] maybe I’ll be able to return to something […] but, I need something that's going to be really flexible” (female participant, private clinic)
Sleep. Although some participants thought they were sleeping more due to fatigue or had no changes to their sleep, most participants reported sleep disturbances. Some experienced trouble falling asleep, woke frequently, and/or had breathing difficulties. To cope with sleeping difficulties, some participants tried over-the-counter sleeping medications or supplements. The most common coping strategy was napping during the day to manage the severe exhaustion caused by Long COVID; even those who slept well during the night often had to nap during the day.
“[…] my sleep pattern is really screwed up. […] I’m sleeping at different hours of the day, I still need naps sometimes. […] I’m restless. I’m fitful. […] I have trouble getting to sleep, I have trouble waking up. […] I’m not sleeping properly. So I […] start[ed] taking melatonin and magnesium […] I just needed to get some sleep. I felt like my body was not resting.” (female participant, recruited through news article)
Impact on Relationships. Many participants discussed the importance of having a social support system during their Long COVID journeys. Support systems included spouses, friends, parents, and children who assisted participants with managing ADLs, supported them financially if they were unable to work, and acted as emotional support. Some participants lacked a support network making their experience “actively isolating” (male participant, recruited through news article). There were also feelings of guilt for not being able to fulfill their social roles. These feelings provoked negative family interactions, trying to push through symptoms, and adverse effects on mental well-being.
“[…] it impacts […] every single facet of your relationships, your ability to maintain connections outside of the home with friends, your ability to […] be a father, ability to be a supportive partner and husband […]” (male participant, recruited through news article)
Impact on Mental Well-Being. The effects of Long COVID on mental well-being were severe and far-reaching; most participants reported feeling “angry”, “anxious”, “depressed”, “frustrated”, “stressed”, “desperate”, and/or “helpless”. We want to stress that psychological diagnostic labels such as “anxiety” or “depression” should not be flippantly used to characterize the experiences of individuals living with Long COVID. Long COVID is not analogous to these terms and treating it as if it is leads individuals to feel as though their experiences are being minimized.
Participants struggled to adjust to the disabling and uncertain nature of Long COVID. Many participants wrestled with having a poorly understood “invisible illness”. While deemed essential for learning to cope with and manage mental well-being, only a subset of participants were offered 1:1 psychological counselling as part of their Long COVID program (e.g., Workers’ Compensation). All other participants were either not offered psychological support, already saw a therapist on a regular basis, sought counselling on their own, were discouraged from seeking publicly-funded psychological help due to wait times, did not want counselling on their health record, or did not feel it was necessary.
“when […] your life is not normal anymore and when you have […] an invisible disease […] it's hard because people […] can't see that you're ill […] So the psychologist […] has been […] critical because I am not depressed, but I can see how this would push a person into a depression. I'm sad, […] I'm angry, I'm frustrated […] but I'm not depressed, but I have seen people [online who have] lost their jobs, […] all their money, […] their homes. So psych[ological] support to help people [is] critical.” (female participant, Workers’ Compensation)
Theme B: Transitioning from Symptoms to Services – (In)Ability to Access Care
Attempting to Access Services. Initial access to services was dependent on what symptoms and functional changes drove participants to seek care, the guidance and advice received from a medical professional or trusted individual, and/or self-advocacy efforts.
Identifying That Support Was Needed. Most participants explicitly spoke about reasons prompting them to look for Long COVID services. The most frequently mentioned were addressing invisible cognitive symptoms, improving breathing, return-to-work, return to pre-COVID levels of function, and learning to manage fatigue. Other reasons for seeking care included improving strength and mobility and trying to find definitive answers about Long COVID. Participants needed to be health literate to understand that there may be services available that could help them address their concerns as well as where and how to access services.
“Even knowing about it. That's the barrier […] I had no clue […] I never even thought these things existed. I just thought I was […] going to have to do it myself.” (female participant, recruited through news article)
In(Ability) to Find Support. Many did not know what Long COVID services were available in the province, how to navigate to them, or did not think there would be any support available yet. The majority of individuals sought guidance from a medical professional (nearly all sought guidance from their family doctor) or someone with greater experience in the health system. For some, these interactions facilitated access to services. Having an accepted Workers’ Compensation claim and being assigned a personal case manager also facilitated access. However, if family doctors did not suggest additional services, participants often went no further within the system.
“It's […] not knowing who to call. […] my family doctor is fish out of water like there is no 1-800-post-COVID helpline […] right? […] [T]here's a lot of people out there and they're bouncing around … trying to manage on their own […] I […] just don’t know who to go to anymore” (male participant, private clinic)
Self-Advocacy. Family doctors’ limited experience with Long COVID led many participants to feel belittled and/or not believed following interactions. Some reported their symptoms were attributed to anxiety, depression, or panic attacks. As a result, many participants felt they needed to self-advocate for acceptance, recognition, and access to better care. Self-advocacy manifested itself in participants asking for specific referrals, self-referring, trying various self-management strategies, or seeking advice from peers living with Long COVID. The success of self-advocacy efforts varied between participants. Some were able to “build [their] own care team” (female participant, private clinic) and felt like they were making progress in recovery. Others felt as though they had to “fight tooth and nail” (male participant, Workers’ Compensation) for care received. Given that a hallmark symptom of Long COVID is fatigue or exhaustion, many participants wished they did not need to expend limited energy on self-advocacy.
“Yeah 100% [I had to advocate for myself]. […] I think finding the right doctors and the right people to help […] is essential and […] [being] as sick as I am and was […] I just wish I didn't have to do that myself.” (female participant, Workers’ Compensation)
Navigating Long COVID Services. Barriers related to stigma; appointment logistics; testing and ‘normal results’; and financial precarity and affordability of services existed when trying to navigate Long COVID services within the health system.
Stigma. The perception that those living with Long COVID were still contagious was frequently mentioned as a factor decreasing participants’ comfort accessing services. Many participants were met with hesitancy when going for testing or appointments even though they were past the contagious period of the virus, leaving them feeling embarrassed. Multiple participants experienced weight stigma: their providers attributed ongoing symptoms to their weight or “fat-shamed” them (female participant, private clinic). Age-related stigma was discussed by some younger participants who felt as though their symptoms were not taken seriously presumably because younger people were not supposed to experience severe symptoms. Self-stigma of having contracted COVID-19 was also present. All of these forms of stigma created feelings of shame and made some participants hesitant to access Long COVID services.
“I was going for my follow-up […] lung test […] And [the receptionist] […] looked at the requisition and […] said you have COVID. […] [And] in front of everybody [she said] […] you have to go home […] you have COVID and I was mortified […] it's scary enough to have COVID. [T]hen to be treated like you have the plague after […] you're not contagious anymore, […] it was really very bad.” (female participant, public clinic)
Appointment Logistics. Appointment wait times, driving and transportation, and symptoms resulting in being physically unable to leave the house were often mentioned as logistical barriers to access. While waiting for health appointments was common prior to the pandemic, staff redeployment, timing of Long COVID program development, and referral uncertainties and errors increased time delays. Driving and transportation posed a barrier to access as many participants were not comfortable driving to and from appointments due to their symptoms. Having the energy to get up, get ready, and leave the house was challenging for many, therefore attending appointments outside the home was viewed as unfeasible. Some participants appreciated having virtual or in-home care options as they did not have to use their limited energy to get to appointments.
“Some […] things were virtual so that really helped me [so I didn’t] have to drag [my] butt out there because getting up in the morning is really hard. And then as you go through the week, you're just more and more tired as you go to the things” (female participant, Workers’ Compensation)
Testing and ‘Normal’ Results. Participants conveyed concerns regarding how testing (i.e., PCR) and the subsequent results influenced their ability to access the right services at the right time. While presumed COVID-19 cases are now included in clinic eligibility criteria in Alberta and recognized globally,3 many participants wondered whether the lack of positive PCR testing and minimal care early in their journey contributed to ongoing symptoms. Participants who lacked a positive PCR test often felt “desperate to prove [they] had something” (female participant, private clinic) and pushed themselves during health assessments (i.e., treadmill stress tests) sometimes causing post-exertional symptom exacerbation (also known as post-exertional malaise).43–45 Participants also reported frustration with perceived futile diagnostic testing, saying the test results did not match their symptoms and that receiving ‘normal’ test results created further limitations to accessing other providers.
“I had [all] those [tests] done and, like so many others, […] these tests are showing basically nothing. And it’s like, ‘oh, your heart, […] looks […] fine.’ But I’m here to tell you it’s not. None of us are lying. […] the tests […] that you're using are ineffective […] It doesn't mean that we don't have this, it just means that you don't have the means to detect it.” (male participant, recruited through news article)
Financial Precarity and Affordability of Services. Many participants discussed how having a lower income due to being unable to work prevented them from accessing services since less money was coming in while their household expenses had increased. Beyond Long COVID services, these expenses included grocery or meal delivery, parking at appointments, equipment and assistive devices, and supplements or medication. For some, being unable to work was not stressful as they had financial resources. Others had income support through Workers’ Compensation, Employment Insurance, or long- or short-term disability insurance. Many participants did not qualify for government-provided COVID-19 income support which increased financial precarity and the inability to afford Long COVID services. Financial precarity was further exacerbated if participants were the primary provider and if they were unsure whether they would be able to return to their job.
“I’m […] still making [Workers’ Compensation] money which is less than what I was making before to the point where […] our budget, we only have like $300 […] to spare and most of that is go[ing] to covering overdue and late charges on bills that we've put off because we didn't have the money to pay them […] Like we're stretched extremely thin […]” (male participant, Workers’ Compensation)
Theme C: Improving the Quality of Long COVID Services by Illuminating Key Lessons
The barriers experienced when attempting to transition from symptoms to services discussed above influenced which service(s) participants accessed. Participants discussed factors about Long COVID services that they liked (i.e., enhancing service quality) and/or disliked (i.e., diminishing service quality). We framed each sub-theme as the key lesson related to quality that stemmed from all related likes and dislikes. Framing each sub-theme as an actionable opportunity ensures the findings are interpreted with the overarching goal of providing tangible ways to improve the system based directly on what was heard from participants.
Quality Care is Grounded in Knowledge. Participants often spoke about how providers had limited knowledge about Long COVID treatment and rehabilitation. Many accepted this limited knowledge since COVID-19 is a novel illness whereas others disliked this limited knowledge and expected providers to have more definitive answers. Regardless of whether participants were accepting or intolerant of this limited knowledge, most believed there was an opportunity to provide more education and/or support for providers to increase knowledge around Long COVID management. Participants noted family doctors specifically needed additional education and support to recognize symptoms of Long COVID, make appropriate referrals, and direct participants to available self-management resources.
“[…] the hardest thing was just to be constantly sick all the time […] and have no one with any answers. They just say there is no answers because we've never studied [it] and it’s a brand-new disease […] but how can I be this sick and there just be no help?” (female participant, recruited through news article)
Quality Care is Clear. Clarity regarding program components, available resources and information, and next steps in care plans translated into perceived quality of Long COVID services. Participants wanted to know what to expect from the program(s) they accessed. Some participants reported being misinformed about what symptoms the programs addressed leading them to access programs they did not need. Participants felt that self-management education and resources needed to be provided in manageable amounts, understandable, and easy to access to be perceived as clear. Cognitive issues related to Long COVID amplified this need. If participants felt overwhelmed by the amount of information or if it was difficult to access, they often did not use it. Finally, participants perceived care as quality when they had clear next steps. Clarity in next steps was improved through regular follow-ups and check-ins with providers.
“[…] she sent me so much stuff by email I didn’t know if I was coming or going. Like there was pages and pages and pages of stuff and some of it was out of my realm of understanding, […] I didn't read a lot of that stuff […] because I found [it] […] hard to wade […] through” (male participant, RAL)
Quality Care is Supportive. Participants felt supported by their providers if they were knowledgeable, validated their experiences and concerns, made them feel understood, and reassured them. Participants wanted their providers to help them feel as though they were “not in it alone”. Participants disliked feeling belittled, dismissed, and/or not heard. Participants felt most supported when they had clear guidance from knowledgeable providers who took them seriously and were willing to be flexible to accommodate ongoing symptoms.
“[…] [I would like] to see a physio and an occupational therapist on a bi-weekly basis maybe, where it goes on for […] like a year, where we're able to say like this is your next step, […] and there will be like some weeks where like I don't hit those targets because I'm relapsing […], but I think […] just long enough for me to be able to see progress and still keep in touch with them and for them to […] guide this ship as I sail it.” (male participant, recruited through news article)
Quality Care is Interprofessional and Intermodal. Programs addressing Long COVID symptoms using a multidisciplinary approach (i.e., Workers’ Compensation, BreatheWell Physiotherapy) were perceived as higher quality than programs focused solely on pulmonary symptoms. Many participants also expressed preferences for mode of care delivery. Some felt in-person care was more appropriate as they felt seen and heard, received more ‘hands on’ assessment or therapy, and felt they were kept more accountable. Others preferred receiving care completely virtually to decrease risk of repeated COVID-19 exposure and to prevent symptom exacerbation that may be triggered by attending an in-person appointment. Some participants discovered the utility of virtual care after having Long COVID and therefore preferred a hybrid model.
“I think at the time [when I was comfortable going in-person] cases were improved so […] I felt like there was a less of a risk, and of course everybody was masked so I felt more comfortable in that way. […] Having an […] invisible illness is very psychologically straining, so I think that […] feeling seen and heard was achieved more in-person [than virtually].” (female participant, recruited through news article)
Quality Care is Relevant. Participants spoke about their perceptions of the relevance of peer support groups, certain types of rehabilitation, and self-management information received. Some participants liked patient-led Long COVID peer support groups (i.e., Facebook groups) as they found them highly relevant and made them feel they were not alone in their journey. Others did not and felt they negatively impacted their mental well-being. Physiotherapy to improve breathing and movement was considered the most relevant rehabilitation service for Long COVID if it was provided safely.18 Participants who underwent programs using traditional graded activity or exercise felt these caused symptom exacerbation, flare-ups, and relapses. These programs were disliked and considered less effective compared to programs focusing on the importance of rest, energy conservation, and pacing. Finally, participants felt the most relevant self-management information received was related to breathing exercises, pacing, and activity or energy management and liked opportunities to learn, practice, and reinforce these skills.
“I think the […] key […] is learning how to pace […], but like actually being taught what it is, why we do it and how [to] do it would have […] made a huge difference.” (female participant, private clinic)
Quality Care is Well-Timed and Proportional to Abilities. Some participants believed their symptoms would be less severe if they had learned about pacing or activity and energy management earlier than three months post-acute infection since they initially tried to push through their symptoms with the common perception that exercise would help to increase endurance and facilitate recovery. Over time, they came to believe this may have delayed their recovery. Some participants discussed how they disliked the high frequency and long duration of appointments as it made it difficult to balance activities and rest to pace and manage Long COVID symptoms. Due to physical limitations, attending numerous appointments (sometimes daily) was unfeasible and unmanageable. Despite challenges experienced, participants were motivated to manage the overwhelming frequency and duration of appointments since they felt desperate for any assistance.
“[…] had I had some […] background knowledge [earlier], then maybe I would have taken tinier baby steps and maybe I wouldn’t have […] these huge crashes and maybe my recovery would have been quicker, but these are all maybes […] I really don't know.” (female participant, Workers’ Compensation)