“I’m still here, I’m alive and breathing”: The experience of Black Americans with long COVID

Abstract

AIMS AND OBJECTIVES:

In this study, we aimed to characterize the impact of long COVID on quality of life and approaches to symptom management among Black American adults.

BACKGROUND:

As a novel condition, qualitative evidence concerning long COVID symptoms and their impact on quality of life can inform the refinement of diagnostic criteria and care plans. However, the underrepresentation of Black Americans in long COVID research is a barrier to achieving equitable care for all long COVID patients.

DESIGN:

We employed an interpretive description study design.

METHODS:

We recruited a convenience sample of 15 Black American adults with long COVID. We analyzed the anonymized transcripts from race-concordant, semi-structured interviews using an inductive, thematic analysis approach. We followed the SRQR reporting guidelines.

RESULTS:

We identified four themes: (1) The impact of long COVID symptoms on personal identity and pre-existing conditions; (2) Self-management strategies for long COVID symptoms; (3) Social determinants of health and symptom management; and (4) Effects on interpersonal relationships.

CONCLUSION:

Findings demonstrate the comprehensive ramifications of long COVID on the lives of Black American adults. Results also articulate how pre-existing conditions, social risk factors, distrust due to systemic racism, and the nature of interpersonal relationships can complicate symptom management.

RELEVANCE TO CLINICAL PRACTICE:

Care approaches that support access to and implementation of integrative therapies may be best suited to meet the needs of long COVID patients. Clinicians should also prioritize eliminating patient exposure to discrimination, implicit bias, and microaggressions. This is of particular concern for long COVID patients who have symptoms that are difficult to objectively quantify, such as pain and fatigue.

NO PATIENT OR PUBLIC CONTRIBUTION:

While patient perspectives and experiences were the focus of this study, patients were not involved with the design or conduct of the study, data analysis or interpretation, or writing the manuscript.

1. INTRODUCTION

Long COVID refers to symptoms that persist or emerge following initial infection with the novel coronavirus, SARS-CoV-2. These symptoms can affect multiple organ systems and include dyspnea, anosmia, fatigue, insomnia, concentration and memory problems, gastrointestinal problems, depression, anxiety, headaches, body aches, and joint pain (Al-Aly et al., 2021). Diagnostic definitions include both post-acute illness (symptoms beyond 4 weeks) and long-term illness (symptoms beyond 12 weeks) (Fernández-de-las-Peñas et al., 2021). Recommended treatment pathways for long COVID also vary depending on the symptoms and reflect a combination of primary care, specialized long COVID clinics, and referrals to other specialists (Wolf et al., 2022). As a novel condition, qualitative evidence concerning long COVID symptoms and their impact on quality of life can inform the refinement of diagnostic criteria and care plans. Furthermore, applying qualitative methods to elevate and prioritize the perspectives of communities that face social disadvantage can help identify strategies that reduce health inequities in chronic conditions like long COVID (Shelton et al., 2022). However, the underrepresentation of Black Americans in long COVID research is a barrier to achieving equitable care for all long COVID patients.

Existing data on the experience of having long COVID largely come from health professionals and majority White samples in the United Kingdom (Humphreys et al., 2021; Kingstone et al., 2020; Ladds et al., 2020; Razai et al., 2021; Rushforth et al., 2021; Taylor et al., 2021). Several themes are consistent across these studies. First, long COVID is associated with considerable changes in physical functioning (Humphreys et al., 2021; Razai et al., 2021; Rushforth et al., 2021). Additionally, the relapsing-remitting nature of long COVID symptoms often leaves patients feeling afraid and helpless (Kingstone et al., 2020; Razai et al., 2021; Taylor et al., 2021). Many report wishing that their physicians would do more to guide their treatment and monitor their condition (Kingstone et al., 2020; Ladds et al., 2020; Razai et al., 2021).

The underrepresentation of Black patients in qualitative research on long COVID is of particular concern given the racial disparities related to the pandemic in the United States of America. Black Americans have had higher COVID infection rates and hospitalization rates than White Americans (Mackey et al., 2021). Black Americans also experienced disproportionate job loss and lower gains in re-employment relative to White Americans during the pandemic (Gemelas et al., 2022; Montenovo et al., 2021). In terms of long COVID racial disparities, some data demonstrate higher rates of long COVID among mixed-race patients and Black patients relative to White patients (Subramanian et al., 2022), while other data suggest there is no difference in incidence by race (Hirschtick et al., 2021; Mermelstein et al., 2021; Taquet et al., 2021). Regardless of whether race predicts the likelihood of developing long COVID, patients in the USA will likely be disproportionately Black given the higher incidence of acute COVID in this patient population as cited above.

Racial disparities related to the pandemic are driven by social inequities. Shim and Compton provide a framework for conceptualizing how social inequities lead to health inequities (Shim & Compton, 2020). In this framework (Supplementary File 1), past and present policies and social norms interact and influence the unfair and unjust distribution of opportunity in society (e.g., systemic racism). This social landscape contributes to individual- and community-level exposure to social risk factors, which strongly reverberate along racial and ethnic lines in the USA. There is a wealth of data on the biological implications of social risk factors, termed social determinants of health (Marmot & Wilkinson, 2005), which can influence health and wellbeing via mechanisms including psychological stress and the physiologic stress response.

Racism, colorism, implicit bias, and underrepresentation are among the barriers to achieving racial equity in healthcare, research, and intervention development (Dehon et al., 2017; Norwood, 2015; Vyas et al., 2020; Williams, 1999). Conventional medical and research models do not adequately address these barriers to equitable care because they are limited in their ability to prioritize how individual attitudes, beliefs, and behaviors within social, environmental, and cultural contexts can intersect with health (Solar & Irwin, 2007). More qualitative evidence concerning the experience of having long COVID among Black Americans is needed to help reduce inequities in long COVID research and inform the development of long COVID care approaches. Therefore, this study aimed to characterize the impact of long COVID on quality of life and approaches to symptom management among Black American adults. This spotlight, within-group approach is valuable for illuminating community strengths and barriers that would otherwise be overlooked by alternative approaches, such as comparative studies (Griffith et al., 2017).

2. METHODS

2.1. Study design

This study is part of a larger program of research on long COVID among Black Americans, including the development of a freely available web-based resource that supports symptom management (i.e., https://www.PASCguide.com). Under the priorities of this research, separate studies focused on opportunities to improve long COVID care (Bergmans et al., 2022) and vaccine perceptions. In this particular study, we aimed to characterize long COVID symptoms, approaches to symptom management, and the impact of long COVID on quality of life among Black American adults.

We employed an interpretive description study design using semi-structured interviews and inductive, thematic analysis. Interpretive description is a pragmatic approach in nursing science that allows researchers to draw on existing knowledge to translate observations and subjective patient experiences into practical insights and recommendations for clinical practice (Thorne, 2016; Thorne et al., 1997). We followed the Standards for Reporting Qualitative Research (Supplementary File 2, O’Brien et al., 2014).

2.2. Reflexivity

Two main preconceptions informed this study: (1) Social determinants of health and systemic racism contribute to racial inequities in patient care; and (2) it can be challenging for patients with chronic conditions that include diverse sequelae like long COVID to navigate healthcare settings. These preconceptions influenced the breadth of our literature review, our interview guide development, and our continual attention to the ways that systemic and structural barriers could influence patient experiences during data analysis.

2.3. Participants

To be eligible for this study, participants had to be adults aged 18 years or older who self-identified as Black or African American. Participants also had to report physical or mental health symptoms that lingered over 1 month after an acute COVID infection. We did not limit eligibility to those with a positive COVID test given inequities in testing availability and accessibility (Lieberman-Cribbin et al., 2020; Rader et al., 2020). Participants were ineligible for the study if they were not experiencing long COVID symptoms at the time of their interview, or if they could not access the interview session using the virtual meeting software Zoom (Zoom Video Communications Inc, 2016). We applied our inclusion and exclusion criteria by administering an eligibility survey (Supplementary File 3) that collected participant demographics (i.e., age, race, gender) and information about acute COVID (i.e., date of onset, diagnostic testing).

We recruited participants using convenience sampling between May and September 2021. Recruitment methods included creating a study page on UMHealthResearch.org, snowball sampling, and posting study flyers on Facebook. Once individuals expressed an interest in the study, we communicated via telephone and email to explain the project in more detail, share the informed consent document, and schedule the semi-structured interview.

2.4. Data collection

After reviewing existing literature on long COVID, authors with expertise in qualitative methods, health equity, social determinants of health, and community-engagement (R.S.B., K.C.-P., and M.D.) developed the semi-structured interview guide (Table 1). The interview guide included questions about having acute COVID, lingering physical and mental health symptoms from COVID, symptom effects on day-to-day life, aspects of life that make it harder or easier to manage long COVID symptoms, and COVID vaccine perceptions. After pilot testing the interview guide with two participants, content revision was not necessary.

Table 1.

Semi-structured interview guide

1. Tell me about your experience with COVID-19.

2. Do you have any lingering physical or mental health effects from COVID-19? Tell me about it/them.

3. Are there any other physical or mental health effects that you attribute to being infected with COVID-19?

4. I’m going to ask about aspects of life that may have made it harder or helped you deal with these symptoms.

a. Starting with harder, what aspects of your life do you think have made it harder to deal with these symptoms? How so?

b. Now let’s talk about what has made it easier. What aspects of your life have helped or made it easier to deal with these symptoms? How so?

5. What are your thoughts about the COVID-19 vaccine?

6. Have you had the vaccine, or do you plan to get it?

a. If yes: Why did you decide to get it?

b. If no: Why did you decide not to get it?

7. Is there anything else you would like to add about your experience with COVID-19?

We recorded race-concordant, semi-structured interviews remotely using Zoom (Zoom Video Communications Inc, 2016). Our Zoom platform is compliant with guidelines established by the USA Health Insurance Portability and Accountability Act for collecting protected health information. Participants attended the interview session via telephone, computer, or another similar device. Participants could choose to leave their camera on for visual recording or turn it off depending on their comfort level. On average, interviews lasted 54 minutes and up to 139 minutes. The interviewer wrote summary statements immediately after the recorded interviews ended. We transcribed the interviews verbatim using the audio and video recordings without participant review and de-identified the transcripts prior to analysis.

To determine data saturation, we used Excel (Microsoft Corporation, 2021) to record the types of long COVID symptoms that participants reported during data collection. For each of these symptoms, we monitored the scope of participant responses related to (a) the impact of symptoms on quality of life; (b) the intersection of symptoms with interpersonal relationships; and (c) clinical and self-directed treatment. Using this information, our data achieved saturation after 13 interviews. We completed 15 interviews total.

2.5. Data analysis

We used an inductive, thematic analysis approach (Maietta et al., 2021). First, we extracted information on participant demographics, COVID severity, and symptoms from the interview guide and the eligibility survey. Afterwards, three authors open-coded the transcripts independently to generate memos and diagrams using Word, Excel, and PowerPoint (Microsoft Corporation, 2021) that presented the relationship of data segments (i.e., codes) within participants.

Next, we compared the within-person memos and diagrams to create categories that represented the data across participants. The categories for this study focused on two questions: what is the impact of long COVID on quality of life, and how do participants approach symptom management inside and outside of clinical settings? Senior authors (R.S.B. and M.D.) led category development, which reflected collective input through weekly meetings with separate groups within our large research team. Additionally, on 23 September 2021, we presented preliminary findings from our program of work at the University of Michigan Social Work Research Symposium: Integration of Social Justice and Shaping Inclusion in Research. Feedback on our presentation allowed us to incorporate input from researchers and clinicians with expertise in health equity and patient-centered care into our category development.

We then condensed these categories into preliminary themes. To refine theme development, we converted the preliminary themes into a coding scheme for focused coding. Using MAXQDA 2020 (VERBI Software, 2019), two authors independently applied the coding scheme so that each data segment in the transcripts was assigned to one or more of the themes. During this stage, we also identified any data segments that conflicted with the initial coding scheme so that we could incorporate them into our final themes. This approach resulted in four main themes.

2.6. Ethical consideration

The University of Michigan Institutional Review Board (HUM00197791) approved this study. Prior to conducting the recorded interviews, we provided participants with a copy of the informed consent form via email. We also reviewed the informed consent document with participants at the start of the scheduled interview sessions to emphasize that the study was voluntary, that they could choose not to answer any questions, and that they could stop participating at any time. We anonymized all identifiable information in the transcripts prior to analysis, including names, locations, and dates.

3. RESULTS

3.1. Sample description

We conducted 15 interviews using the same interview guide for all interviews. Women represented most of the sample (80%). Eleven participants resided in Michigan and the four remaining participants lived in Illinois, South Carolina, Georgia, or Louisiana. Acute COVID led to hospitalization for five participants. See Table 2 for a full sample description. All but one participant received a positive COVID diagnosis from a nasal swab. This participant experienced acute symptoms in February 2020, which included anosmia and congestion, and obtained a negative antibody test in January 2021 (“I finally reached out to the doctor in January about the antibody test and I did go get it. But [the doctor] said that it was probably too late because I think you’re supposed to go within a six-month time frame.” – P4).

Table 2.

Sample description

Respondent	Gender	Age groupa	State of Residence	Positive COVID test	Months since initial COVID symptoms/diagnosis	Hospitalized for COVID	Symptoms
1	F	60–65 years	Michigan	Yes, nasal swab.	15	No	Anosmia Anxiety Changes in body temperature Chest pains Fatigue Memory and concentration problems Rapid heart rate Shortness of breath Thrush
2	M	50–54 years	Michigan	Yes, nasal swab.	4	Yes	Anosmia Blurry vision Depression Loneliness Memory and concentration problems Shortness of breath
3	F	55–59 years	Michigan	Yes, nasal swab.	6	No	Anosmia Fatigue Headaches Memory and concentration problems
4	F	45–49 years	Illinois	No, not tested	15	No	Anosmia Blurry vision Fatigue Memory and concentration problems Paresthesia
5	F	55–59 years	Michigan	Yes, nasal swab.	13	Yes	Anosmia Back pain Brittle fingernails Coughing fits Fatigue High blood pressure Insomnia Joint pain Memory and concentration problems Muscle weakness Rapid heart rate Rash Shortness of breath Swollen joints Vivid and strange dreams
6	F	30–34 years	Michigan	Yes, nasal swab.	14	No	Anosmia Anxiety Difficulty losing/maintaining weight Paresthesia
7	F	20–24 years	Michigan	Yes, nasal swab.	5	No	Anosmia Fatigue Headaches Joint pain Shortness of breath
8	M	20–24 years	South Carolina	Yes, nasal swab.	5	No	Anosmia Headaches Insomnia Lack of motivation Paresthesia Ringing in the ears Sinus pressure and congestion
9	F	25–29 years	Michigan	Yes, nasal swab.	15	No	Anosmia Anxiety Depression Fever and chills Rapid heart rate
10	F	25–29 years	Michigan	Yes, nasal swab.	10	No	Anosmia Headaches
11	F	30–34 years	Louisiana	Yes, nasal swab.	19	Yes	Back pain Diarrhea Difficulty losing/maintaining weight Dry mouth Fatigue Hair loss Joint pain Lack of motivation Low oxygen levels Memory and concentration problems Migraines Rapid heart rate Rash Shortness of breath Thrush Vertigo
12	F	20–24 years	Michigan	Yes, nasal swab.	16	No	Anxiety Depression Fatigue Hair loss Memory and concentration problems
13	F	30–34 years	Michigan	Yes, nasal swab.	9	No	Anxiety Body aches Chest pain Coughing fits Depression Elevated blood sugar Fatigue Fever and chills Headaches Joint pain Low oxygen levels Memory and concentration problems Muscle weakness Rapid heart rate Shortness of breath Swollen lymph nodes Vertigo
14	F	40–44 years	Michigan	Yes, nasal swab.	2	Yes	Memory and concentration problems Shortness of breath
15	M	55–59 years	Georgia	Yes, nasal swab.	13	Yes	Chest pains Fatigue Headaches Joint pain Muscle weakness Shortness of breath

^aNot specified to protect participant confidentiality

The most common long COVID symptoms included neurological, cardiovascular, respiratory, psychological, and musculoskeletal symptoms. Most participants reported anosmia (e.g., “I have loss of smell and smells like it’s burning in the house.” – P9), fatigue (e.g., “chronically fatigued and tired doing simple things.” – P12), memory or concentration problems (e.g., “I really have to go back and try to remember what triggered what I’m going to do, and I can’t even do that.” – P2), and shortness of breath (e.g., “Some days I can go up and down the stairs without a problem and then the next time I went up, I’m sitting on the steps because I can’t finish.” – P1).

Some participants reported headache (e.g., “There’s the headaches now. There’s sharp headaches that I can’t even pinpoint where they’re coming from.” – P15), anxiety and/or depression (e.g., “I feel like this has caused me a lot of anxiety and depression.” – P13), joint pain (e.g., “You know when you bend your fingers back and forth, you like ball your hand up? I have pain with that, and I’ve never had pain. It’s pain and stiffness.” – P5), and rapid heart rate (e.g., “fast and pounding heartbeat” – P13).

Less common were symptoms of muscle weakness (e.g., “I get muscle weakness and joint pains, especially my knees, my ribs, and arms. I get pains in new regions.”) and paresthesia (e.g., “I had this burning feeling on my arm. It comes and goes. That was pretty weird, but I think those nerves right in my arm. I think it’s on the inside because when I touch it, it feels normal but feeling a patch of weird sensation. It’s not burning but a similar feeling. It’ll stay and it’ll go.” – P8).

3.2. Thematic Results

We identified four themes that characterize the impact of long COVID on quality of life and approaches to symptom management among Black American adults (Table 3). Examples within each theme provide additional detail on participants’ qualitative experiences.

Table 3.

Four main themes concerning the impact of long COVID on quality of life and approaches to symptom management among Black Americans.

Theme		Examples of qualitative experiences	Representative quotations
1.	The impact of long COVID symptoms on personal identity and pre-existing conditions.	a. Identity changes.	• “It is just a little bit of your pride being damaged too because I don’t see myself at 51 dragging an oxygen tank around with the hoses and stuff hanging out my nose. That’s not a cool look for me.” (P2) • “I guess I’m just kind of depressed. Seeing people walk in my neighborhood and exercise I feel stressed out about it sometimes, or depressed because it’s like, I used to do that, why can’t I exercise?” (P11)
		b. Worsens pre-existing conditions and the ability to manage them.	• “I’m asthmatic and my asthma was well controlled. But [COVID] triggered my asthma, so I started wheezing and having asthma attacks again.” (P3) • “I think [COVID] might’ve messed my liver up or sped up the hepatitis. I have hepatitis C from a blood transfusion when I was two. It was untreated up until last month ... I got to the point where I was ripping my skin off from itching so much. I have scars all over me, my arms, my face. It was bad. It was so bad.” (P6)
2.	Self-management strategies for long COVID symptoms.	a. Self-directed lifestyle changes.	• “Now I’m kind of mindful, how to do this. I don’t, I don’t, jump into risk anymore. I understand now, I think I actually put myself on a scale and because I know there are some things my body can’t actually fend off for now. So, I try as much as possible to actually be extra careful in dealings and I don’t do things above my capacity.” (P15)
		b. Social support and/or spirituality.	• “I remember calling my mom to help me put on my clothes because I couldn’t physically do it myself.” (P11) • “I’m not paying my bills. Well, I could pay my bills but I don’t have any income coming in. There’s that process of now what’s going to happen. I’m just, lot of prayers, a lot of well wishes.” (P2)
		c. Positive thinking and gratitude.	• “I’d rather take this experience [with long COVID] versus having been on a ventilator and all that type of stuff.” (P4)
3.	Social determinants of health and symptom management.	a. Individual-level factors	• “I can’t smell it and my husband is at work and I wanted a bowl of cereal. So, I taste it. I can’t really taste it, so I don’t know. So, he comes in from work and I go, ‘Can you smell the milk? Is the milk still good?’ He’s like ‘Yeah the milk is good.’ So, every day I’m eating cereal, every day I’ve been going through this ritual. And I remember, I think it was Thursday, he came in from work and I said, ‘Is the milk okay still?’ And he was like, ‘Nahhhh.’ And I was like, ‘Oh my god, I had cereal this morning.’ … I threw it out, but there was nothing I could do. I’m home by myself so my dogs, they can smell it, but they can’t tell me anything.” (P3)
		b. Area-level factors	• “I know if I want to go out and do something simple, I can’t. I can do it, but now it’s like how far do I have to walk? Do I have to take the oxygen tank with me or not? You take the oxygen tank, if you live in the hood, you feel vulnerable. So, what’s stopping somebody from running up on me, what can I do?” (P2)
4.	Effects on interpersonal relationships.	a. Relating to and supporting others with long COVID.	• “Now for my husband, he has it.” // “So, I wake up at night and I’m just burning up, but also over the winter. I thought I was starting to have hot flashes. I was like, ‘Can you have hot flashes after being through menopause?’ But no, my husband was having the same thing. So, we have temperature fluctuations. We can be sitting and we’re freezing and then we’re burning up.” (P1)
		b. Feeling understood by family members who cared for them during acute COVID.	• “My mom even told me, she says, ‘I don’t know what it is about you.’ She says, ‘I don’t know if I should like it or not.’ She says, ‘I understand. You have been through a lot.’ And she said, ‘You’re still standing.’ She says, ‘But you’re still standing in front of me, but you’re different.’” (P2)
		c. Feeling frustrated by family members and friends who are dismissive of long COVID symptoms.	• “I have a very good friend of mine who seems to be caught up in the conspiracy theorist groups. She’s thinking this is not as bad as people are saying. She would literally invite me over to her house pretty much every week. I told her, ‘I’m just going to be frank with you and tell you, please do not invite me over, because I’m not coming until this is over. I’m trying to save my life.’ Not only was she inviting me, she was inviting other friends as well. All these people are getting together and one works in the medical field so she’s going to work every day, coming home, and then she would come over there. I was like, ‘No way, I’m just not coming.’” (P5)
		d. Feeling frustrated by those who do not prioritize COVID infection risk.	• “People don’t really care about the virus now at all and it’s very very sickening and very very scary to me.” // “You even see unvaccinated people out on the streets without necessary protocol, without necessary precautions and you keep wondering what’s up, how did you get here. But I just feel people are no longer scared, people are no longer bothered about it. People are actually okay if it comes.” (P15)

Theme 1. The impact of long COVID on personal identity and pre-existing conditions.

Participants reported that long COVID symptoms affected their ability to take on their normal day-to-day roles and impeded physical activities and functioning. For some participants, this meant limiting activities that required physical effort (“I’m a sport person. Normally, I enjoy playing soccer. And what I noticed was that my vital capacity has reduced drastically because normally I play 60–70 minutes before I won’t feel tired. But now, 30 minutes and I’m out of gas.” – P15)

The changes in health and daily functioning that participants attributed to long COVID influenced how they viewed themselves. One participant explained how a seemingly small physical change due to long COVID—her nails becoming brittle—significantly impacted her identity.

“My fingernails are breaking like crazy. I’ve never had a problem with growing fingernails. I have strong fingernails. They don’t just crack or break or whatever. I go to the place to get my nails done every now and then. The people sitting next to me be like, ‘Oh I wish I had your [fingernails], look at your fingers.’ Even the people [who do my nails], ‘You have long nail beds,’ or ‘You have nice nails,’ or things like that. I’ve never had problems with them and I’m leaving trails of nails. Like they just break. They’re just breaking.” (P5)

In addition to personal identity, long COVID symptoms could alter participants’ worldviews. For example, one participant talked about how her experience with long COVID and the pandemic in general changed her spiritual identity (“During the COVID era, I think my views of faith and spirituality have kinda shifted and that’s because of having COVID, or the COVID era, and God allowing COVID to happen. I think I definitely have shifted, I guess, in how I see faith.” – P12) . Another participant explained how his near-death experience with COVID influenced how he viewed the pandemic relative to generations before him and others in his community (“When we speak about how it affects our culture and our beliefs, instead of making it a medical thing, we make it a social thing.” … “We have to let go of the habits that we’ve developed over the years, by generation, by generation, by generation.” // “There’s some people that believe [COVID] is a ‘government thing’. I said, whatever it is, death don’t care what you believe. [Death] don’t care about who you pray to, what you pray for, don’t really matter.” – P2).

Physical changes due to long COVID can negatively impact mood and stress. For example, one participant explained how the physical effects of long COVID made her feel afraid and hopeless (“Some days, it’s so scary, like I don’t know if I’ll ever, ever feel the same. And I keep saying that, and it sounds scary for people to hear because it sounds so hopeless and I’m not trying to sound that way, but this has made me feel real hopeless, like I don’t know what tomorrow will bring.” – P13). Another participant explained how the uncertainty surrounding her symptoms was stressful (“From not knowing what’s going on, my blood pressure, everything was out of whack. I feel like to gain control is narrowing things down to see what happened. What caused this? What caused that?... With the headache, with the head feeling, that’s why my stress level been up.” – P8).

Four participants talked about recent health complications related to pre-existing conditions. Two of these participants articulated that they attributed the changes in their pre-existing conditions to long COVID. For example:

“With my diabetes, I swing. Going high and low because I can’t taste and smell. My appetite is not as it used to be for years, which means I don’t eat like I normally do. When I do eat, I can’t taste anything so I don’t eat as much as I should, and my blood sugar will drop. Then I have to compensate, drink juice or take glucose tablets and then my blood sugar shoots up high.” (P3)

Theme 2. Self-management strategies for long COVID symptoms.

Nearly all participants used self-directed approaches to cope with long COVID and manage their symptoms. Participants made changes to their diet like taking supplements and eating healthier or more “fresh fruits and vegetables” (P1) to help cope with decreasing energy levels and other symptoms. One participant made dietary changes to help with feeling weak and fatigued (“My diet has changed a lot because I need more energy because I kind of, like, feel weak, so I eat a little more than I used to do and a little more healthy.” – P7). Another participant who referenced multiple self-directed strategies to treat her symptoms said that she avoided sugary foods and increased organic and fresh foods to reduce inflammation (“So, I went through my natural items and so I looked up some things and I started working on smell retraining. I cleaned up my diet because I was starting to indulge in sugary treats which I knew causes inflammation. So, I changed my diet to have a more organic fresh fruits and vegetables.” – P1). Participants added supplements to their diet, including B12 and rhodiola. One participant noted that supplements were an added expense with variable impact on her functioning (“When I take those [supplements] and I can afford to keep them and I have them and I take them regularly, I noticed that I’m not as fatigued some days and then there’s some days, I’ll take all those things, and nothing works.” – P13).

One participant talked about using physical activity to increase her endurance (“I do get a chance to go out walking now that the weather has broken. So, I’ve been, you know, just trying to build up my stamina. So, I go out walking when I get a chance, when I don’t have a bunch of meetings, or right after I get off work.” – P3). However, many participants talked about having to reduce their physical activity levels due to long COVID fatigue (e.g., “[I’m] chronically fatigued and tired doing simple things.” - P12).

Participants took steps to accommodate their decreased physical functioning and capacity by pacing themselves (e.g., “sometimes I just try to rest” – P7) and putting accommodations in place. For example, one participant talked about scaling back from her normal routine of bodybuilding (“And as I tried to get back into my normal routine of bodybuilding, I didn’t have the strength. I didn’t have the strength to ride my bike. We didn’t even use our pool because we were just wiped out.” – P1). Another participant made accommodations to perform daily tasks (“I can stand to take a shower without having to sit down. But I still got a shower chair, just in case” – P2).

When dealing with long COVID symptoms and chronicity, participants described the value of social support. For example, one participant described how family members helped her verify long COVID symptoms (“I even let my daughter and I let my friend, my mom, wear my Apple Watch for a day. Like, ‘Let me see if [the high heart rate notification] goes off for you.’ If it’s not going off for you, then why is it going off for me?” – P12). Another example comes from a participant who talked about an electrical fire in her house that she could not smell due to anosmia. After that incident her husband installed a smoke detector:

“So that is challenging being home alone during the day. I’ve mentioned to you before that a fuse blew and I couldn’t smell the smoke in the house, which was really scary.” // “When I walked into the kitchen, I saw smoke but could not smell it, and then I went downstairs and I saw smoke coming from a fuse box, and I realized that I could not smell… It burned the house, and it burned the line to the kitchen plug. So, I called my husband. I was like, ‘You gotta get here right away.’ He came in and he could smell the electrical burning, he saw the smoke from the fuse box, and he turned off the main switch. I told him I was here by myself, and I would not have known if there was a fire unless I felt the heat or saw the flames because I can’t smell anything. That was probably the scariest thing. So, he put up a little smoke detector, couple of them, to help me out.” (P3)

This same participant talked about relying on her spirituality for healing and to help make sense of long COVID (“Six months later, I still can’t smell anything. And that’s weighing heavily on me and along with the lack of taste. So, I just keep praying that I’ll be fully restored. I’m like, ‘Okay, Lord, I don’t know if you teach me patience. I don’t know what’s going on, but I don’t know. It’s the thorn in my side right now.’” – P3). Participations also approached aspects of their situation with a positive mindset. For example, one participant expressed gratitude that her symptoms were not worse and that she had survived COVID (“I’m still here, I’m alive and breathing. I’m not letting this consume me 100% like some people. // I think I’d rather take this experience versus having been on a ventilator and all that type of stuff.” – P4).

3.3. Theme 3. Social determinants of health and symptom management.

Participants described how individual-level factors, including housing quality, race, employment status, and income influenced their ability to manage long COVID symptoms. For example, one participant talked about how his housing quality negatively impacted his ability to cope with his symptoms (“So, it’s a challenge because now I have to live independently by myself. And, so, the question is how do I get up the stairs if I can’t walk six feet? How do I get up the stairs?” // “[My apartment sits on a third floor] and the building has no elevator.” – P2). Another participant explained how racism affected the quality of care she expected for her long COVID symptoms because she is Black.

“I do believe there is bias in medical treatment and one of the things I wrote in my dissertation research was the fact that there are physicians, there are hospitals, that have policies that say they will provide different treatment plans for Blacks vs Whites.” // “You might as well call it Black COVID and White COVID because it’s handled totally different. You try not to go there. You try not to pull the race card, but it’s so evident that you can’t help but say it and then people think you’re crazy, you’re paranoid. But no, I’m like I’m coming from health education and in that environment. I see it. I mean, that’s why I researched it. It is there, and it’s unfortunate.” (P3)

Employment status and finances could also influence symptom management. For example, one participant expressed how fortunate she was to be retired because she was doubtful that she could maintain a job with long COVID (“I am retired. Thank goodness for that, but if I was not retired… I would not be able to work in this condition. If I walk from one room to another my heart is racing. Even sitting down, it’s elevated, so I wouldn’t be able to work. I’m thankful and blessed in that way, that I do have a pension coming in, otherwise I would be out of luck.” – P5). Another participant said that she did not seek further medical care for long COVID because her insurance would not cover enough of the expense (“I don’t know if it’s the plan that I got or whatever, but the deductible is you have to use $2,800 dollars within a year or something. Between me and my daughter, we’re not going to the doctor that much so, I guess, it could be not covering anything. But I just paid my doctor’s bills from the heart palpitation stuff and that was a lot, so I’m just like, I’m not going to be running to keep seeing these [doctors].” – P4).

Three participants described how area-level factors intersect with their capacity to manage long COVID symptoms. For example, one participant described how her financial circumstances allowed her to overcome the challenge of living in a food desert and shop at more expensive grocery stores to access healthy food. “I live in a food desert… But we’re blessed, so my husband and I, we go wherever we need to get what we need” (P1). Similarly, another participant talked about how both the Great Recession and the COVID pandemic represent community-wide challenges where she lives, and that these shared experiences increased people’s willingness to help each other. She explained:

“So, a number of homes have been abandoned and torn down on our street. Right now, there are only four occupied houses on our street on this side, and all four houses have gone through COVID. So as far as the neighborhood, everybody on this block has had COVID. It is bad enough that we live in [a low-income area in Detroit]. // “We are all dealing with COVID in the community. More people are looking to help others because we know it ravaged our community. And the church.” (P3)

3.4. Theme 4. Effects on interpersonal relationships.

Participants reported finding solace with others who have long COVID (e.g., “I don’t even know how I found that Facebook group. But I’m glad I did because those people relate to what you’re going through.” – P4). Family caregivers who understood the seriousness of COVID and the challenge of managing long COVID symptoms were a source of encouragement. One participant talked about how much it meant to have a brother care for him when others avoided being around him because they did not want to risk getting COVID (“[After I was hospitalized], my brother was the primary caregiver.” // “My family was very supportive, very very supportive because they were the last resort I had at that time. Even a couple of close friends were nowhere to be found at that particular time because they were being extra careful of their whole place also. So, my family was very supportive, especially my brother was very very supportive and was given the thumbs up, actually helped me to deal.” – P15).

Alternatively, interpersonal relationships could be a source of criticism and skepticism. One participant talked about how everyone he lived with made him question whether he was overreacting. (“Everybody in my house, I’m feeling like they saying, ‘Ain’t nothing wrong with you, you look fine, you look fine.’ It’s like, I was looking at myself like, ‘Am I just bugging?’” // “So, I go acting normal and it’s like, ‘No, you’re not yourself.’ My relatives, my brothers, they like, ‘Man, ain’t no way man. Ain’t no way it’s still COVID.’” – P8). In another example, family members teased a participant for having anosmia (“[My siblings] constantly joke with me about not being able to smell or taste and I laugh it off but sometimes I just want to choke them out (laughing)… That’s a challenge to continuously laugh it off but I’m like, think about it, this is going on six, seven months and how would you feel if you couldn’t smell or taste things correctly in months… I think if I bust out in tears, they’ll leave me alone.” – P3). Additionally, one participant emphasized how she sought support through social media groups because she was not getting it from family members like her cousin (“You would think I don’t want to talk to a bunch of strangers, but these are people who know what you’re going through versus my cousin doesn’t really understand me.” – P4).

Participants expressed frustration with those who did not prioritize the risk of COVID infection. One participant talked about how people in his community would probably regret being more passive about avoiding infection once someone close to them dies from COVID (“When you see people not wearing masks, when you see people not doin’ whatever, it’s because if they’re very passive about it, ‘Oh, I know somebody who had it, no big deal.’ Yeah, what if your grandmother gets it, then what? Then all of a sudden, we gon see pictures of big mama on your shirt because you were out here being reckless.” – P2). Another participant did not understand why some parents did not want their children wearing masks (“These parents are just like, ‘Masks are gonna hurt our kids.’ I’m like, ‘Since when?’ The doctor was wearing [a mask] to deliver your baby. Did they pass out? Were they hurt? You wanna still have a surgery now without a mask and all of that? Because all of a sudden, masks are bad. And I’m lookin like these are the same people that was failing health and biology. I can’t tell somebody else what to do.” –P14). Some participants stopped seeing friends or family who were not being cautious enough (“We really cut off seeing younger family members because they weren’t really being as cautious as we wanted them to be.” – P1).

4. DISCUSSION

Using an interpretive description design, this study helps address the underrepresentation of Black American perspectives and experiences in long COVID research. Our findings revealed how long COVID affects personal identity and physical functioning among Black adults, as well as the range of strategies that participants used to manage their symptoms, including self-directed lifestyle changes, leaning on social networks, and positive thinking. However, social disadvantage interfered with symptom management. Additionally, interpersonal relationships were influenced by the degree to which other people acknowledged participants’ long COVID symptoms and prioritized the risk of COVID infection.

Other qualitative work corroborates the significant and unpredictable impact of long COVID on physical functioning (Humphreys et al., 2021; Razai et al., 2021; Rushforth et al., 2021), and how these changes are a source of distress (Kingstone et al., 2020; Razai et al., 2021; Taylor et al., 2021). Results of this study elaborate on the heightened effects of long COVID among those with pre-existing conditions. For example, participants described how anosmia made it more challenging to manage diabetes and how dyspnea exacerbated previously well-controlled asthma; and another person experienced a hepatitis C symptom flare. Diabetes, asthma, and hepatitis C are more common and more severe in Black communities relative to White communities (Bradley et al., 2020; Fitzpatrick et al., 2019; Hill-Briggs et al., 2020). Furthermore, conditions like type 2 diabetes and kidney diseases increase the risk of acute COVID infection, in addition to hospitalization and death following acute COVID infection (Gu et al., 2020). These underlying health disparities could contribute to inequities in long COVID incidence and trajectories of recovery.

Participants managed their long COVID symptoms using multiple self-directed lifestyle changes. These findings compliment recent qualitative work on resilience among American women with long COVID (Aghaei, Aggarwal, et al., 2022). In this study, participants talked about coping with their symptoms by shifting to a healthier diet, setting realistic goals, being more physically active, seeking spiritual connection, leaning on social networks, and supporting their community through volunteer activities and research participation. In another study that focused specifically on cognitive impairments from long COVID (Callan et al., 2022), participants made dietary changes and prioritized rest to help manage their symptoms. Similarly, participants in our study managed long COVID symptoms by eating more fruits and vegetables, engaging in regular physical activity, seeking care and understanding through interpersonal relationships, pacing themselves, and leaning on spirituality and faith-based resources. Unique to our study, participants also managed their long COVID symptoms by taking dietary supplements and expressing gratitude despite the change in health status. Those with long COVID will likely benefit from self-directed lifestyle changes and therapies that compliment conventional clinical care. This is because Long COVID’s proposed etiologic mechanisms include immune dysfunction, inflammation, and nociplastic pain/central sensitization (Goudman et al., 2021; Yong, 2021), which can be responsive to integrative and multi-modal treatments. Examples of this come from other chronic conditions that are associated with multiple physical and mental health symptoms like fibromyalgia (Nüesch et al., 2013), lupus (O’Dwyer et al., 2017), and diabetes (Cochran & Conn, 2008). Further research is needed to determine which therapies will be most successful for treating long COVID and whether treatments should be tailored to specific patient subgroups.

Participants in this study also talked about how social factors like housing quality, income, employment status, and area-level socioeconomic status influenced their capacity to manage their symptoms. Specifically, social risk factors reduced the ability to maintain a healthy lifestyle, limit psychological stress exposure, and pursue clinical care. In another study by Aghaei and colleagues (Aghaei, Zhang, et al., 2022), American women expressed how their recovery was impeded by employment-related challenges, an inability to pay medical bills, and a lack of health insurance. Beyond interfering with healthcare visits, there is a wealth of data on the biological implications of social risk factors, termed social determinants of health (Marmot & Wilkinson, 2005). With this realization, there are increasing calls for policy makers and care models to acknowledge and address social risk factors as a strategy for reducing health inequities (American Diabetes Association, 2018; Cole & Fielding, 2007). Within healthcare systems, interventions targeting social risk factors often involve screening participants for social vulnerability and pairing them with internal or external social services (Gottlieb et al., 2017). Further research is needed to determine whether screening patients with long COVID for social vulnerability could inform better symptom management. Additionally, health inequities stem from social inequities; thus, lasting and sustainable improvements in health equity will likely require public policies that complement interventions within clinical settings.

In our study, the expectation of racism and discrimination influenced one participant’s willingness to seek treatment. While this finding is consistent with data from other patient populations (Benkert et al., 2009; Martin et al., 2010), it is yet to be well-represented in long COVID qualitative research. Black people report higher rates of discrimination in the USA healthcare system than White people (Hausmann et al., 2008). Additionally, decision making in clinical settings is implicitly and intentionally influenced by a patient’s race (Vyas et al., 2020). This is a barrier to equitable care since there are no objective measures for long COVID symptoms like pain or fatigue available. Thus, a clinician’s implicit biases have a greater chance of affecting treatment and referral recommendations. The efficacy of interventions that are designed to reduce implicit bias in healthcare settings varies (FitzGerald et al., 2019), but some approaches show promising results. For example, mindfulness training could help practitioners recognize and control implicit biases and increase their compassion for themselves and their patients (Burgess et al., 2017). Experimental evidence indicates that making clinical decisions within egalitarian, peer-networks can improve diagnostic accuracy and reduce bias in final recommendations (Centola et al., 2021). Training and hiring a clinical workforce that is representative of patient demographics may also improve trust and satisfaction related to health care among marginalized groups (Saha et al., 2000; Shen et al., 2018).

4.1. Limitations

While a focus on Black patients with long COVID is a strength of this study, findings may be applicable to other racial/ethnic groups. Participants were disproportionately women. However, the prevalence of long COVID is more common among women than men (Subramanian et al., 2022), and we did not stratify experiences by gender. Additionally, most participants resided in Michigan, so we could not evaluate differences between geographic areas. We used convenience sampling to recruit study participants, which limits the ability to extrapolate results to the general population. Access to the internet was required to view the informed consent document and participate in the study, which likely limited representation among those with lower socioeconomic status. However, conducting study interviews virtually as opposed to in-person helped prevent transportation and logistical barriers (Archibald et al., 2019; Krouwel et al., 2019; Lobe et al., 2020), especially for participants who experienced fatigue and pain. We used multiple approaches to ensure the internal validity of this study: we independently developed memos and diagrams; we independently applied the coding scheme; we reached consensus across study team members for category and theme development; we obtained feedback on preliminary findings from the scientific community; and we relied on participants’ own words to describe the main themes. However, future research may benefit from additional approaches, including member checking and community partner debriefing.

5. CONCLUSION

A qualitative approach allowed us to characterize the impact of long COVID on quality of life and approaches to symptom management among Black American adults. Participants reported many symptoms due to long COVID, including anosmia, cognitive dysfunction, dyspnea, fatigue, and pain. The chronicity and uncertainty of these symptoms was mentally taxing and contributed to feelings of stress and hopelessness. In some cases, long COVID also exacerbated pre-existing chronic conditions and changed how participants saw themselves and the world around them. To cope with long COVID, participants used a variety of strategies that included pacing, nutrition, relying on social networks, and positive thinking. However, social factors affected the capacity to manage COVID symptoms. For example, participants limited clinical visits and avoided buying healthy foods and supplements to manage their symptoms due to the financial expense. Notably, one participant expected to receive worse care for long COVID in clinical settings due to racism. Lastly, while participants could relate to others living with long COVID, participants felt frustrated by people who did not acknowledge long COVID or prioritize the risk of COVID infection.

6. RELEVANCE TO CLINICAL PRACTICE

Care approaches that support access to and implementation of integrative therapies (e.g., addressing social risk factors like food insecurity, unemployment, and exposure to discrimination) may be best suited to meet the needs of long COVID patients. Patients may benefit from clinicians who are sensitive to the level of skepticism and lack of support that those with long COVID can face in their personal lives. Clinicians should also prioritize eliminating patient exposure to discrimination, implicit bias, and microaggressions. This is of particular concern for long COVID patients who have symptoms that are difficult to objectively quantify, such as pain and fatigue.

What does this paper contribute to the wider global clinical community?

• This study helps address the underrepresentation of Black Americans in long COVID research.

• Findings highlight how pre-existing conditions, social risk factors, distrust due to systemic racism, and the nature of interpersonal relationships can complicate the management of long COVID symptoms.