COVID-19 vaccination perspectives among patients with Long COVID: A qualitative study

ABSTRACT

Individuals who have Long COVID may have unique perspectives about COVID-19 vaccination due to the significant impact that COVID-19 has had on their lives. However, little is known about the specific vaccination perspectives among this patient population. The goal of our study was to improve our understanding of perspectives about COVID-19 vaccines among individuals with Long COVID. Interviews were conducted with patients receiving care at a post-COVID recovery clinic. Deductive thematic analysis was used to characterize participant perspectives according to the vaccine acceptance continuum framework, which recognizes a spectrum from vaccine acceptance to refusal. From interviews with 21 patients, we identified perspectives across the continuum of vaccine acceptance. These perspectives included acceptance of vaccines to prevent future illness, concerns about vaccine side effects on Long COVID symptoms, and refusal of vaccines due to perceived natural immunity. A limitation of our study is that these perspectives are specific to individuals receiving care at one post-COVID recovery clinic. In conclusion, our study demonstrates that some patients with Long COVID are uncertain about COVID-19 vaccines and boosters but may also be amenable to conversations that impact future vaccination acceptance. Patient perspectives should be considered when communicating recommendations for COVID-19 vaccinations to this population.

KEYWORDS:

• Post-acute COVID-19 syndrome
• Long COVID
• vaccination
• booster
• qualitative research

Introduction

Vaccination remains a primary tool to prevent severe illness and death as the COVID-19 pandemic has transitioned to an endemic phase. Although prior COVID-19 infection alone may provide protection from severe disease following future infection,¹ studies have shown vaccination in combination with previous infection has higher and prolonged effectiveness for preventing severe illness, suggesting a benefit of “hybrid immunity.”^2,3 COVID-19 vaccination is therefore considered a valuable public health intervention, even for individuals that have experienced prior COVID-19 infection.

A significant amount of research has investigated individuals’ perceptions of the novel COVID-19 vaccines, revealing various motivations to receive the vaccine, as well as concerns and conspiracies that have fueled vaccine refusal.⁴ While most Americans have received at least one COVID-19 vaccination, a subset remains unvaccinated, and many who received their initial vaccination series have foregone boosters.⁵ Efforts to address vaccine and booster hesitancy include identifying and tailoring messages toward those who remain uncertain about their vaccination decision.^6–8

Individuals with Long COVID, who experience prolonged and sometimes debilitating symptoms following acute COVID-19 infection,⁹ may have unique perspectives about COVID-19 vaccination due to their health status and the profound impact that COVID-19 continues to have on their lives. However, there is limited research on the unique perceptions regarding COVID-19 vaccines in this population. To our knowledge, only three studies have investigated vaccination perspectives among individuals with Long COVID.^10–12 Using qualitative and quantitative methods, these studies collectively have described concerns about vaccine safety specific to Long COVID patients,¹⁰ perceptions about the impact of COVID-19 vaccination on Long COVID symptoms,¹¹ and the perceptions of COVID-19 vaccine hesitancy and fear among individuals with Long COVID.¹² None of these studies were conducted in the United States at a time when COVID-19 vaccines as well as booster doses were widely available and recommended for adults.

Evaluating perspectives at a time during which vaccines and boosters are available is critical in understanding the evolving complexity of vaccination perceptions that are impacted by individuals’ experiences as they are faced with multiple opportunities to receive COVID-19 vaccines/boosters over the course of the pandemic. The goal of this study was therefore to improve our understanding of perspectives about COVID-19 vaccines among individuals with Long COVID at a time during which individuals had the opportunity to receive both initial COVID-19 vaccines and booster doses. Expanding our understanding of the unique perspectives of individuals with Long COVID is important in creating resources or interventions (e.g., messaging) that can help support vaccination decision making in this patient population. As millions of individuals have experienced or continue to experience Long COVID,¹³ the potential repercussions of encouraging vaccination in this population are significant.

Methods

One-on-one interviews were conducted in August-September 2022 with patients seeking care at a post-COVID recovery clinic associated with an academic medical center. Interviewers included five members of the research team who are MS- or PhD-trained health services researchers. Purposeful sampling was used, where eligible participants were 18 years of age or older, were English speakers, self-reported doing well in daily life before contracting COVID-19, and self-reported that Long COVID was having a significant impact on their life at ≥3 months following acute COVID-19 infection. Clinic staff, who were not healthcare providers, approached patients and introduced the study to them. The contact information for patients who were eligible and interested in participating was then passed on to the research team. The research team reached out to these individuals by e-mail to schedule their interviews.

Interviews were conducted by phone or videoconference using a semi-structured interview guide that included questions about COVID-19 vaccination (see supplementary materials for semi-structured interview guide). The interview guide was developed by members of the research team including health services researchers and clinicians within the post-COVID recovery clinic. This guide included topics surrounding patients’ Long COVID journey, their experiences seeking healthcare,¹⁴ the impact of Long COVID on their mental health, experiences of social support during their Long COVID illness, and perspectives about COVID-19 vaccination. Interviewees did not know their interviewers prior to their interview. The Ohio State University’s Institutional Review Board approved this work as part of a larger study that explored the experiences of high-risk populations across the pandemic period (study ID: 2020B0288). An amendment to the IRB protocol was approved in August 2022 to include recruitment and participation of Long COVID patients in study interviews. All participants provided verbal informed consent and received an electronic $25 gift card in appreciation of their time.

Audio recordings of the interviews were transcribed and analyzed using deductive thematic analysis.¹⁵ First, a preliminary coding dictionary was created based on the topics covered in the semi-structured interview guide. Four members of the research team, who also served as interviewers, coded one interview transcript and met to discuss code definitions, clarify the application of codes, and make changes to code definitions, when needed. The finalized codebook contained 22 codes that covered the topics included in the interview guide (e.g., COVID-19 experience, Long COVID concerns, Vaccines). The remaining transcripts were then split among team members who applied codes to the sections of each transcript that represented the topics defined by the codes in the finalized codebook. Weekly meetings among coding team members were used to discuss coding progress and coding decisions to ensure codes were applied consistently across transcripts. This process allowed us to identify excerpts across all interviews in which participants expressed perspectives regarding COVID-19 vaccines or boosters. These transcript excerpts were identified with the code ‘Vaccines.’

Transcript excerpts identified with the code ‘Vaccines’ in this preliminary coding were then collected for further analysis. These excerpts were then analyzed deductively by two members of the research team using the continuum of vaccine acceptance framework, which recognizes a spectrum of attitudes toward vaccination, from acceptance to refusal: acceptance, acceptance with concerns, delay, refusal with uncertainty, and refusal.^16,17 We decided to organize our analysis with this framework because it recognizes the breadth of vaccination perspectives from acceptance to refusal, while acknowledging the nuances of those perspectives that lie between the extremes. This framework is helpful to identify and characterize perspectives of individuals who are still undecided about receiving COVID-19 vaccines or boosters. Identifying these perspectives may be particularly useful in tailoring interventions to support vaccination (e.g., messaging) to the needs and preferences of this patient population.

The five categories of the continuum of vaccine acceptance framework were used as our pre-defined themes to further analyze the interview excerpts identified with the code ‘Vaccines.’ A coding dictionary was created based on these five themes and one member of the research team applied these codes to categorize excerpts across themes. Two members of the research team then reviewed and discussed the excerpts to come to consensus on the representative perspectives encompassed in each theme.

Results

Interviews, averaging 49.5 minutes in length (range: 26–84 minutes), were conducted with 21 patients (Table 1). Patients were 19–68 years old (mean: 47.6; SD: 13.7), primarily female, and predominantly first infected with COVID-19 in 2020. The majority of patients had received a COVID-19 vaccination as well as a booster. Perspectives about COVID-19 vaccination spanned the continuum of vaccine acceptance (see a summary of themes in Table 2 and additional supporting quotations in Figure 1).

Figure 1. Representative quotations from patients with Long COVID, along the continuum of COVID-19 vaccine acceptance.

Table 1. Demographic characteristics and vaccination status of participating patients with Long COVID.

Characteristic	Participants N = 21 n (%)
Sex
Female	16 (76)
Male	5 (24)
Age
18–44	7 (33)
45–54	7 (33)
55–64	5 (24)
65+	2 (10)
Year of first COVID-19 infection
2020	10 (48)
2021	6 (28)
2022	5 (24)
COVID-19 vaccination status
Vaccinated, boosted	12 (57)
Vaccinated, not boosted*	5 (24)
Not vaccinated	4 (19)

*Includes two individuals not yet eligible for a booster.

Table 2. Summary of themes along the continuum of COVID-19 vaccine acceptance.

Theme	Description
Acceptance	Unequivocal acceptance of COVID-19 vaccines and boosters to protect against future illness.
Acceptance with concerns	Acceptance of COVID-19 vaccines and/or boosters with concerns about side effects unique to Long COVID patients (e.g., impact of vaccination on Long COVID symptoms). Some expressing uncertainty about receiving future booster doses.
Delay	Vaccination delayed due to fear of side effects or lack of perceived need for vaccination. Incentives (e.g., requirement for social events) and Long COVID experience described as influencing eventual decision to receive vaccine. Variable interest in receiving future booster doses.‬‬‬‬‬‬‬‬‬‬‬
Refusal with uncertainty	Refusal of vaccine due to perceived natural immunity. Long COVID experience described as influencing consideration of vaccination.
Refusal	Unequivocal refusal of COVID-19 vaccines due to perceived natural immunity, concerns about side effects unique to Long COVID patients, and doubt about vaccine efficacy.

Theme 1: acceptance

Participants who eagerly accepted the vaccine sought protection against severe illness from future infections. As one patient described,

My thought is anything that I can do to try to prevent or lessen illness, I’m going to do it. … I’ll do anything I can to try to not get sick again. (F, 56, vaccinated, boosted)

Another participant described how eager they were to receive their COVID-19 vaccine and booster dose:

As soon as the vaccine was available, I took it. … Categorically, as soon as anything was available, I took it. Once the second shot was available, I took it. Once the booster was available, I took it. (M, 51, vaccinated, boosted)

Theme 2: acceptance with concerns

Some accepted the vaccine, but with concerns. Participants described several concerns about COVID-19 vaccination, particularly about side effects that may be unique to individuals with Long COVID. One participant in describing their greatest concern about Long COVID revealed their fear surrounding the COVID-19 vaccines:

That it’s gonna kill me. That’s my bottom line is that something during this time, whether it be a vaccine or whether it be COVID. (F, 54, vaccinated, boosted)

Among this group, some remained undecided about receiving a booster. One participant, who was vaccinated but had decided to not yet receive a booster dose, described their concern:

I was honestly extremely scared. I didn’t want the vaccine because in my mind, I was not fully healed from COVID. … I’m thinking, okay, if I’m fighting this thing off, why do I want to put something that might make it worse in me? And no one would know how it impacts from person to person. You hear stories of it helping people. And you also hear stories of it like causing extra things to happen. And I was like, I can’t handle one more extra thing happening right now. So, I honestly did not want it. (F, 29, vaccinated, not boosted)

Theme 3: delay

Others delayed vaccination, but accepted the vaccine after having COVID-19, expressing that their experience with Long COVID altered their perceptions about the risks of infection versus the benefits of vaccination. Prior to their COVID-19 infection and experience of Long COVID, these individuals described not taking COVID-19 seriously or not thinking they needed to be vaccinated due to their home, work, or social situation. These individuals described that they received the COVID-19 vaccine after their infection to protect them from getting sick again or lessen the severity of their illness if they were to be re-infected. One participant described how their experience with Long COVID changed their perspective regarding COVID-19 and the COVID-19 vaccine:

The people that don’t think COVID is … real, I raise my hand ‘cause I was one of them. … I never thought I would get COVID. … Before I got all this [Long COVID], I never got the vaccine. I don’t know if the vaccine would have helped or whatever the case was. I don’t know if it was too late because I waited too long. But now I, since I got my two vaccinations, I just have a better peace of mind where, you know, it’s at least if I do get the COVID, I might get symptoms, but I feel a lot better since I’ve done that. (M, 46, vaccinated, not yet eligible for booster)

Further, incentives for vaccine adoption appeared to play a role in vaccine uptake for some who were delaying COVID-19 vaccination. One participant explained that their decision to delay getting a COVID-19 vaccine due to fears of side effects was changed when they had the opportunity to attend an event that required proof of COVID-19 vaccination:

I was scared to get it because they were saying people who had COVID had adverse reactions to getting the vaccine. So, I was kind of nervous. I didn’t want to be sick again. But I scored those once in a lifetime tickets, so I went and got my shot. (F, 32, vaccinated, not boosted)

Theme 4: refusal with uncertainty

One participant refused vaccination, but expressed uncertainty in their decision, citing their experience with Long COVID as a factor in considering vaccination. This individual described their consideration about receiving a COVID-19 vaccine and how their perceptions about natural immunity following their COVID-19 infection impacted their decision to remain unvaccinated:

I just didn’t get the vaccine. So then, when I did get COVID, I kind of thought about it, to get the vaccine. But since I’ve been out, I don’t know. I feel I do have or should have some immunity to go with what I went through. (M, 53, not vaccinated)

Theme 5: refusal

Finally, several participants refused vaccination unequivocally. Their decisions were influenced by several factors: their belief that their natural immunity following COVID-19 infection precluded them from needing the vaccine, their concerns about the potential impact of vaccination on their Long COVID symptoms, and their doubts about the efficacy of the vaccine in preventing COVID-19 infection. One participant described their decision to not receive a COVID-19 vaccine, including the influence of hearing about others’ experiences with vaccination in a Long COVID support group on social media:

I didn’t get vaccinated before I got sick. After I got sick, I didn’t see the sense because I had antibodies. Just like, why get vaccinated, now? And, you know, I talked to quite a few people you know, in the beginning, COVID support groups like on Facebook. I’m in like three different social media support groups for Long COVID. And a lot of people were talking about how it made their symptoms worse after they got the vaccine. So, I didn’t, I never got the vaccine. And as time has gone on, man, I have watched person after person after person after person that was vaccinated get the virus, like it doesn’t even work. So, no, I have not been vaccinated and I don’t intend to. (F, 55, not vaccinated)

Discussion

Perspectives expressed by our study participants spanned the continuum of vaccine acceptance and revealed reasons for which patients with Long COVID may accept, delay, or refuse COVID-19 vaccines or boosters. Our findings align with prior research that has investigated differences in perspectives along the continuum of vaccine hesitancy among adults in the United States with varying degrees of hesitancy toward or refusal of COVID-19 vaccines.^18,19 Participants in our study reflected on how their experiences with Long COVID impacted their perceptions about COVID-19 vaccines, including individuals who were convinced to receive, or considered receiving, a COVID-19 vaccine for the first time due to their Long COVID experience, as well as individuals who received an initial COVID-19 vaccine, but were uncertain about receiving future booster doses due to the potential impact on their Long COVID symptoms. These findings demonstrate that the unique perspectives of Long COVID patients should be considered when discussing vaccination recommendations with this population.

Our findings also illuminate the unique concerns about COVID-19 vaccines and boosters in this population, including fears about side effects specific to individuals with Long COVID and questions about the necessity of vaccination among COVID-19 survivors. Our study is novel in that it is, to our knowledge, the only qualitative study utilizing one-on-one interviews with Long COVID patients to explore the experiences and perspectives of this population with respect to COVID-19 vaccination at a time when COVID-19 vaccines and boosters were widely available to adults in the United States. Our findings supplement results reported in a limited number of studies utilizing different methodologies. Similar concerns about COVID-19 vaccines have been expressed online, as reported in a mixed-methods analysis of posts mentioning Long COVID across social media platforms.¹⁰ Our qualitative findings also supplement prior research utilizing quantitative methods to assess differences in fear and vaccine hesitancy among groups who have not experienced a COVID-19 infection, who have experienced a COVID-19 infection but did not develop Long COVID, and who have experienced a COVID-19 infection and did develop Long COVID. In this study conducted by Duradoni et al., perceptions of fear surrounding COVID-19 vaccination did not differ between groups.¹² However, vaccine hesitancy was lower among those who had Long COVID, as compared to those who had experienced a COVID-19 infection without developing Long COVID. Our findings also align with previous qualitative work that described concerns about vaccine safety and the impact of vaccination on Long COVID symptoms among Black adults at a time when COVID-19 vaccines were available, but booster doses were not yet recommended.¹¹ As our study was conducted in the fall of 2022, when COVID-19 vaccines and boosters were widely available, our results expand on prior findings to demonstrate the added complexity of vaccination decision making that Long COVID patients may experience as they are faced with opportunities to receive multiple doses of the COVID-19 vaccine/booster as the pandemic evolves.

Our study highlights that individuals with Long COVID may require additional information to help make decisions about COVID-19 vaccination, and our findings suggest that these individuals may be amenable to conversations that can impact their future vaccination decisions. However, there remains a need for greater scientific evidence to inform guidance related to the risks and benefits of COVID-19 vaccination for those with Long COVID.²⁰ As scientific knowledge expands, for example growing evidence that suggests COVID-19 vaccination can prevent Long COVID^21,22 or reduce existing Long COVID symptoms,²³ it will be critical to disseminate this information to the general public. With more than 15% of Americans estimated to currently have or have had Long COVID,²⁴ the potential implications of vaccination for this population are significant.

Limitations and opportunities for future studies

This study has several limitations. First, our participants were receiving care from a post-COVID recovery clinic at a single academic medical center in the Midwest. Many of these patients were experiencing severe and prolonged symptoms of Long COVID, which may not be representative of all patients with Long COVID. Future work should aim to collect perspectives from a broader population of Long COVID patients. Approaches that afford the opportunity to use mixed-methods, such as surveys with closed-ended and open-ended questions, may be particularly valuable in expanding our knowledge about perspectives in this patient population from a larger study sample. Second, we did not ask participants to self-report their race/ethnicity or their educational level. These characteristics may impact their experiences regarding vaccination decision making. We recognize that understanding perspectives across diverse populations is critical to consider unique experiences that can inform tailored interventions to support vaccination. Future work should seek to assess additional participant characteristics in relation to their vaccination perspectives. Finally, because the availability and knowledge about COVID-19 vaccines and boosters is continually evolving, our findings represent perspectives unique to the cross-sectional timing of our study. Continued research is needed to understand how perspectives about vaccination may continue to change over time.

Conclusion

Our study revealed that perspectives about COVID-19 vaccination spanned the continuum of vaccine acceptance among individuals with Long COVID. These perspectives included reasons to unequivocally accept or reject COVID-19 vaccines, as well as descriptions of how Long COVID impacted vaccination decision making and expressions of concerns specific to Long COVID patients. Our findings provide information that could potentially be helpful to Long COVID patients as they consider future COVID-19 vaccines and booster doses. Furthermore, our results highlight that some individuals with Long COVID may be open to considering receiving a COVID-19 vaccine for the first time, although those who do choose to receive an initial vaccine or series may have concerns that prevent them from receiving booster doses. Future interventions should consider tailored messaging to support vaccination and booster adherence in this patient population.

Acknowledgments

We would like to acknowledge the contribution of research and clinical team members whose efforts have been indispensable in conducting this study. These team members include Jennifer Eramo, Lauren Teuschler, Stacy Stanwick, Leah Roth, and Alaxandria Crawford, all affiliated with The Ohio State University. We would also like to express our appreciation to the individuals with Long COVID who participated in interviews for this study and extend our gratitude to the staff at Ohio State University Wexner Medical Center’s post-COVID recovery clinic.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

Data from this study will not be shared publicly due to concerns for participant privacy.

Supplementary data

Supplemental data for this article can be accessed on the publisher’s website at https://doi.org/10.1080/21645515.2024.2327663.

Additional information

Funding

This work was funded by a grant from the National Cancer Institute (U54CA260582).