Abstract
Background
The COVID-19 pandemic challenged healthcare systems like the Department of Veterans Affairs (VA) to pivot to new models of care and keep up with rapidly evolving practice and treatment guidelines. These challenges were amplified by the context of a polarized society and widespread mistrust of government and traditional media communication.
Objective
We sought to better understand experiences with COVID-specific care and the role of patient-provider interactions.
Design
Using semi-structured qualitative phone interviews, we collected Veterans’ accounts of their treatment, recovery, and any follow-up care for COVID-19.
Participants
We used VA electronic health records data to recruit a nationally representative sample of participants across three disease severity categories (ICU, acute care hospitalization, and outpatient) and across three timepoints (2–8 weeks, 8 weeks to 6 months, and 12 months) after having COVID-19. A total of 94 Veterans were interviewed by phone once between June 2021 and June 2022.
Approach
Interviews were transcribed and analyzed using deductive-inductive content analysis.
Key Results
Three main themes emerged: (1) Veterans made sense of their COVID-19 experiences by comparing themselves to others and doing their own research, often feeling they had to defend their beliefs to others and in the face of critical media coverage; (2) perceptions of care sometimes aligned with distrust in institutions but positive communication with healthcare providers substantially impacted Veterans’ trust in their VA care; and (3) the most effective healthcare interactions resulted from clear and empathetic answers from trusted providers.
Conclusions
Clear, consistent messages delivered with respect and empathy had the potential to overcome patients’ hesitancy and mistrust of government and media information sources.
Trial Registration
Chronic Lung Disease and COVID-19: Understanding Severity, Recovery and Rehabilitation Needs (LAUREL), ClinicalTrials.gov ID NCT04628039
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BACKGROUND
As of June 3, 2024, the Department of Veterans Affairs (VA)—the largest integrated healthcare system in the USA with more than 120 acute care hospitals—reported 962,101 cases and 26,158 known COVID-19 deaths.1 The pandemic required healthcare systems, including the VA, to rapidly shift care delivery models to ensure access, develop practice guidelines, and provide increased support for frontline clinicians, all in the face of shortages in staff, supplies, and expertise.2 Additionally, the outbreak of COVID-19 occurred within an increasingly polarized society, widespread mistrust of the government and traditional media, and pandemic misinformation resulting in cascading negative consequences for health behaviors and policies.3,4,5,6,7,8,9,10
The literature on patient experiences during the pandemic has primarily focused on opinions of virtual care,11 satisfaction with access to non-COVID services during the pandemic,12 and ways to reduce vaccine hesitancy13,14,15,16 and improve vaccine adherence.17,18,19,20 Little is known about patients’ larger experiences of receiving care for COVID-19 in the context of this rapidly changing healthcare environment. Existing literature suggests that healthcare experiences are shaped by a variety of factors including the process of evaluating and gathering of information, trust in that information, and the patient-provider relationships in which information is discussed and shared.4,14,19,21,22,23 The COVID-19 pandemic represented a unique opportunity to view these factors unfold over a short period of time, and to learn from Veterans how to improve their experiences during periods of rapid change.
We conducted in-depth qualitative interviews with patients to understand their perceptions of COVID-19 and treatment. These accounts provide an in-depth look at Veterans’ lived experiences over the course of a year beginning in the spring of 2021 when the first COVID-19 vaccine had been available for a few months. This work is part of a larger mixed methods investigation of Veterans’ healthcare needs and long-term outcomes after COVID-19 (Chronic Lung Disease and COVID-19: Understanding Severity, Recovery and Rehabilitation Needs [LAUREL] ClinicalTrials.gov ID NCT04628039).
DESIGN
Data Collection
Sampling
We used data from the Veterans Health Administration (VHA) corporate data warehouse (CDW) to purposively sample Veterans who tested positive for SARS-CoV-2 across three treatment setting cohorts (ICU, acute care hospitalization, and outpatient). Participants received a preliminary mailing followed by calls to schedule a phone interview. As part of our purposive sampling strategy to reach a wide variety of perspectives, Veterans were also recruited at different timepoints in their recovery: 2–8 weeks, 8 weeks to 6 months, and 12 months after COVID-19 (Table 1). We aimed to recruit a representative nation-wide sample of COVID-19 cases in the VA reflecting the overall demographics of COVID-19 cases in the VA (Table 2).
Interviews
We developed a semi-structured interview guide (Appendix A: Interview Guide) focused on participant illness and/or hospitalization experience; recovery trajectory, follow-up services care utilization (e.g., rehabilitation, medical, social, and Whole Health24); functional outcomes; health-related quality of life; and access-to-care barriers and facilitators. The guide included open-ended questions and semi-structured probes for exploration of emergent themes. The lead analyst (VVP) reviewed initial interviews to ensure adherence to interviewing protocols and assess the effectiveness of the guide. To ensure trustworthiness, transcripts were validated against the audio recording prior to coding. Ten interviews were not recorded due to participant preference or other factors and detailed notes were taken by a second staff member. Participants received a small stipend.
Analysis
Transcripts were analyzed between November 2021 and March 2023, concurrently with data collection using deductive/inductive qualitative content analysis.25 A priori codes and categories were based on the research aims, developed and defined (e.g., TraRec: rehab—trajectory of recovery, rehab services received during recovery from COVID-19) by the lead analyst (VVP) and reviewed by the qualitative methodologist (GGS) and principal investigators (KC, APT). Inductive content analysis included open/unstructured codes created to capture emergent patterns. The lead analyst used ATLAS.ti Windows (Versions 22–23) for coding and data management.26 While the lead interviewer (CS) collected most of the data, the lead analyst coded the transcripts. Rigor was achieved through ongoing conversations27—including weekly discussions between the lead analyst and lead interviewer throughout the data collection and coding process. The larger study team was brought into the analytic conversations through four preliminary findings presentations and their feedback was iteratively incorporated into analysis. Memos to capture the analysis process and reflexivity were used throughout to identify potential biases. Between April and September 2023, the lead analyst wrote the original rough draft of this manuscript, rewrote it in a working session discussing themes with the methodologist, and engaged with the interviewer and one PI (APT) in three other working meetings to further review the findings to determine thematic saturation and formulate the final themes and subthemes. All research procedures were reviewed and approved by the local Human Subjects Review Board.
RESULTS
From a sample of 406 Veterans our team approached, 23% enrolled in the study and completed an interview. Between June 2021 and June 2022, we conducted 94 phone interviews. Respondents were mostly male (85%), and approximately two-thirds were white (65%) and nearly one-third (29%) black. Most (88%) were between the ages of 40 and 79 (see Table 2). There were no major differences in age, race, or rurality between those who completed the interview and those who declined or did not respond. However, a higher proportion of women completed interviews (15%) compared to the proportion of women in the recruitment sample (9%). A subset of the interview participants are quoted in this article (Table 3).
Three primary themes emerged: (1) Veterans made sense of their COVID-19 experiences by comparing themselves to others and doing their own research, often feeling they had to defend their beliefs to others and in the face of critical media coverage; (2) perceptions of care sometimes aligned with distrust in institutions, but positive communication with healthcare providers substantially impacted participants’ trust in their VA care; and (3) the most effective healthcare interactions resulted from clear and empathetic answers from trusted providers. No differences in themes emerged between patient treatment setting cohorts (ICU, hospitalization, and outpatient), or timepoint in recovery; thus, results were summarized across groups.
Theme 1. Making Sense of the COVID-19 Experience
Veterans made sense of their COVID-19 illness by comparing their experience with that of others and doing their own research. When participants talked about their COVID-19 illness or preventative strategies, some came to conclusions that differed from the common public health narrative. These participants reported feelings of being judged and belittled by media and public opinion.
Subtheme 1a: Comparing Treatment and Care to Others
Participants often described their VA care and the treatments they were offered by comparison with what their loved ones or acquaintances experienced, usually in non-VA healthcare settings. Some expressed frustration with the VA for not offering specific treatments they heard about, at times relying on family and friends more than their VA providers:
…the VA had their reason …for not offering me an antibiotic with this upper respiratory stuff. …Like I told you the story about my brother …his doctor gave him the antibiotics. …he got well immediately.—17:23
But, once I was diagnosed, they didn’t have anything to give me. …when [my daughter] went to the hospital, they gave her an inhaler for her chest, and something else. I didn’t get none of that...I was like, what am I getting from the VA?—14:11
Subtheme 1b: Doing Their Own Research
Participants described doing their own research about preventing and treating COVID. For example, one participant dismissed vaccines (“…I just don’t feel there’s enough research on it yet. …the vaccine is scary.”—73:33), which contradicted the same participant’s preference for newly developed treatments (“I should’ve been able to get the antibodies. That was my plan if I ever got COVID …these new antibodies, Sotrovimab, they just developed them, I looked them up and they just developed them a couple of months ago.”—73:34).
Several Veterans’ personal research led to taking supplements, which they credited with protecting them from more severe symptoms if they had a mild case, and for protecting them from intubation or death if they had a more acute experience:
…when COVID first started, I read a lot of articles about pretty much everything. And I started taking Vitamin D, B Complex, and Vitamin C, and Zinc, every day. And there were several people that contracted it at work …they’re younger than me, but they all had respiratory issues...So, I really learned that supplementing with those vitamins helped prevent the respiratory problems.—2:10
They also blamed severe symptoms on a particularly potent strain of the virus despite preemptive self-treatments.
…from the very beginning when COVID came out I did a lot of research, and right away you know I made sure I was taking enough Zinc, Vitamin C, Vitamin D, Quercetin, and Vitamin K. …So, why it attacked my lungs the way it did, I have no idea, just the nature of that particular strain of virus that I had.—73:36
Subtheme 1c: Reaction to Media and Perceived Public Opinion—“We’re Not Stupid”
Several participants expressed frustration with how their opinions and the research they had done on their own were perceived, especially regarding vaccines or some medications like hydroxychloroquine. They explained their reasoning and pushed back against “the media” portraying them as not “smart.”
And I have all of the studies, I’ve done actually a lot of research. …it irritates me how I’m being painted by the media as someone who isn’t even smart enough to know the difference between a peer-reviewed survey and study or not. …It’s not that I think it’s going to give me 3 heads or anything like that. It’s just, I don’t need [the vaccine]…—13:15
No, I don’t trust [the COVID-19 vaccine]. I don’t trust Dr. Fauci, Bill Gates, any of those clowns. …My feelings aren’t based on just conspiracies, it comes from people that are medical professionals themselves. …the media controls it. …like the hydroxychloroquine, it’s been used for 60 years to help people with Malaria. Why all of a sudden is it banned? …They’re just twisting the facts around and make people seem stupid. We’re not stupid, we’re just smart enough to listen to other people, other professionals.—52:40
Subtheme 1d: Reaction to Loved Ones and Providers
For some, the greatest challenge was how they were treated by loved ones and healthcare providers.
[My brother] also got really mad and yelled at me because I didn’t have the vaccine, and that made me cry and made me really sad and depressed. Because they don’t understand my fears, and they think the vaccine is a necessity.—73:44
One Veteran described being dismissed by healthcare providers and recounted a negative experience in a non-VA emergency department only to be admitted to ICU a few days later in a VA hospital.
I went there [non-VA ED] to check in, and in the process of check-in they do a PCR swab too, which they did confirm that it was COVID. …And they asked if I had been vaccinated, I informed them that I hadn’t been vaccinated, at which point they became very derogatory, …care went downhill, and then they discharged me without having auscultated my lungs, having done any chest x-rays. They let me leave that facility saturating at 89% oxygen.—80:2
Theme 2. Perceptions of Care
Veterans often voiced mistrust of the government’s messaging during the global pandemic and, sometimes, a negative perception of their VA-provided healthcare. However, perceptions of high-quality, responsive care often led to trust in the VA despite negative opinions about the government.
Subtheme 2a: Distrust in Institutions and Poor Care Perceptions
In some instances, Veterans’ perceptions of suboptimal care re-enforced existing negative perceptions of the VA and a desire to seek care elsewhere:
They were calling to tell me that I tested positive for COVID. …I already knew I tested positive …I find it very difficult to trust what I’m being told by the federal government and the Department of Veterans Affairs is part of the federal government. …And they’re not following the protocol, the things that they’re saying you should be following. So no, I refuse to wear a mask.—63:26
I talked to them about oxygen, if I needed it or not, and the doctor said, you shouldn’t need it. It was a little bit upsetting. …So, another day went by and my temperature went up, and my oxygen levels went down again. And they said they were going to call the ambulance back again. So, I said, that’s ok, but I don’t want to go back to the VA, you know? I said take me to a community hospital...—4:5
Even a Veteran who had high praise for the VA generally, saying “the VA is by far the best … They’ve got the best doctors and the best equipment,” was worried about how little the doctors seemed to know about the new COVID-19 virus and ultimately distrusted what they said about the pandemic:
And now this vaccine is all going to hell. You’ve got to get as many as four shots, they don’t know. …And that’s the biggest problem I have with it, is, nobody can tell you. …They told me I could never get it twice. Well, I’ve had it three or four times, so don’t tell me this. …And that is my biggest problem with it, these doctors flat out lie...—49:23
Subtheme 2b: Trust in VA and Care, Despite Negative Take on Media, Government
When Veterans had the opposite experience—that of positive communication with their healthcare providers—it reflected in positive perceptions of their care and the VA in general, even for some who distrusted other government or media entities.
Many of the participants who talked about mistrusting media, politicians, or even government institutions still trusted their VA care. For example, a Veteran who works in the medical field said COVID-19 was “a pretty nasty virus, and it should be taken seriously,” but only got vaccinated because it was a job requirement and lamented on the government’s “fear tactics” response to the pandemic, including “that clown on Pennsylvania Avenue.” But when it came to their own care, they were pleased and took the doctors’ advice to quarantine:
I think you’re doing a fantastic job at the VA. As far as that goes I’m very happy with the quality [of the work] that everybody is doing for Veterans. You guys did a magnificent job, I appreciate each and every one of you …I think my beef is not necessarily with the VA, it’s more …with stuff that you guys cannot control, politicians.—15:17
Similar sentiments were echoed by a participant who felt good about a great amount of COVID-19-related VA care received—ICU stay at VA hospital, including discharge on supplemental oxygen, followed by home care visits by a nurse, a physical therapist, and an occupational therapist; follow-ups with cardiology; etc. This Veteran also got vaccinated and reported plans to get a booster, and yet, mistrusted the government in general when it came to pandemic response:
I was very pleased. And I’m going to say this, because the VA takes a lot of …negative reports. My personal experience with the [name redacted] VA Medical Center has been positive, except for a couple of things. …I hate the face mask with a passion. …So, I reluctantly put it on, and as I’m leaving the building I take it off immediately so that I can breathe freely again. …I get so upset and mad over the way this country is reacting to [the pandemic] …the government is lying to you.—32:28–30
Yet in other instances, trust in the VA was mixed. One Veteran described full trust in their care team when it came to having open conversations about the newly developed treatment they had questions about during their hospitalization:
And they immediately talked to me about experimental treatment that was available, but that I would have to sign off on to receive, regarding antibodies …had a lot of questions about it, but once they explained it, I accepted it. …They answered all of my questions and they took great care of me.—2:3 & 14
But this same Veteran’s conversations with their care team about the COVID-19 vaccines yielded a very different reaction:
…the question is, how long do antibodies stay in the body, if they get vaccinated, and it works. And the doctors are like, ‘I don’t know.’ And the nurses are like, ‘we don’t know.’ And I’m like, did you guys get vaccinated, and they’re like, ‘yeah.’ So, I’m like, you let them put it in there, but you don’t know how long it’s going to stay? And they’re like, ‘yeah.’ That doesn’t even make sense. …So, you know, to me that’s a very different conversation than getting vaccinated against polio or something like that. I get definitive answers about that. They are very vague answers about COVID vaccines.—2:25
For this participant, trusted conversations with medical staff alleviated concerns about experimental treatments, but the “vague answers” failed to assuage their vaccine worries.
Theme 3. Effective Healthcare Interactions
Veterans reported the most positive and effective communication happened when they received clear and direct answers without pressure, often leading to greater receptivity to COVID-related healthcare recommendations. In contrast, information perceived as inconsistent was related to negative healthcare experiences and reluctance to follow recommendations.
For one Veteran, it was a trusting relationship with a provider who was not treating them for COVID, combined with a no-pressure interaction that convinced him to get vaccinated:
I was at the VA, at clinic with a therapist, and a nurse stuck her head in the door and said, ‘do you want the shot?’ And I said ‘no.’ And that was it. So, I talked with my therapist, and he had done a lot of research with doctors at the [location redacted] …and when I was leaving I said, ‘what do you think?’ He said, ‘[participant’s name redacted], if you were my dad, I’d tell you to get the shot.’ So, I did. I went out the door and said, ‘ok I’ll take the shot.’ And I got both shots.—83:29
Subtheme 3a: Navigating Conflicting and Overwhelming Information
Many Veterans reported being given conflicting information. One Veteran was told there were no “monoclonal antibodies” to give them, but the patient learned later the VA had those in the hospital all along (73:8). Communication from providers had the power to either exacerbate fears about worst case scenarios or alleviate some of the most frightening moments in-hospital. Overwhelmed by the amount of information on the one hand, and the lack of details on the other, these two Veterans had frightening experiences during their ICU stays that were not eased by their healthcare teams’ communication efforts:
…when all of this happened, they were throwing so many numbers at me, well they give you worst case scenarios I guess? That I’m going to be in the hospital for at least 21 days....When I go home I might be with an oxygen tank. …And they gave me so many bad things, that it was kind of like depressing …But that’s the bad thing about COVID, that there was nobody there with me to listen, I had to take all of that in by myself.—59:19–21
They talked about...putting me on a ventilator. …And I was thinking to myself, oh lord, this is about to get way worse. …my first 2 nights in ICU in the hospital were probably my worst. …super scared, all alone, …it’s just so scary, it’s not your surroundings, they come in in Martian suits. …it wasn’t until another nurse told me ‘…they don’t only wear that to protect themselves, but they wear that to protect you, because you’re so vulnerable that they can’t give you anything either.’ …I never thought of it that way. I bet if one of those nurses would’ve mentioned that as well, that would’ve just helped ease it a little bit more.—62:13 & 17
A few unvaccinated participants reported how conflicting medical advice contributed to their reluctance to get COVID-related treatments such as the vaccine. In one example, a patient who was self-described as vaccine hesitant got two opposite recommendations from different providers:
I have a history of being predisposed to blood clots, I’ve had them before… So, I definitely was vaccine hesitant initially, and tried to do some research. …Pfizer, Moderna, Johnson & Johnson, they all come with that risk of increasing blood clots. So, two of the providers recommended not doing it because I have that increased risk of blood clots. …And my pulmonologist is the one that recommended me to do it.—80:43 & 48
Subtheme 3b: Key to Fostering Trust: Communication with Personal Connection
To effectively address Veterans’ concerns, foster trust in the VA, and ensure uptake of COVID-19 treatments and vaccines, communication with healthcare providers needed to be consistent, and delivered with empathy and respect.
Participants appreciated when their care team answered questions, explained treatment, and provided good care. Trust was born out of personal connection—either because a patient was able to relate to a staff member’s own experience with COVID: “Her [the on-call nurse’s] husband, she told me, had COVID, her whole household actually, so she had a lot of experience going through it as well.”—6:5, or a genuine sense of caring: “…you do get that phone call from the nurse asking if you’re ok. That really meant a lot to me. …I know it’s her job, but she really sounded like she cared. So that meant everything to me.”—66:33
Proactive and ongoing communication with staff was key for how Veterans perceived their care at the VA—both during diagnosis or hospitalization and in follow-up care. For some, it was the continuity of a pre-existing trusted provider relationship that helped after a COVID ICU stay:
…I went into the hospital, they took care of me. …They were excellent. When I left, the first thing, my doctor called and asked how I was doing, and she kept on calling to check on me. That’s the rapport that we’ve always had. …my doctor knows me, she trusts me, I trust her.—75:31, 18 & 24
To counter conflicting information, a couple of Veterans suggested different providers should be ready to answer questions consistently—because in the legacy of the Tuskegee experiments, some Veterans are still scared and think the shot may contain the virus or make them sick (25 & 45) However, having reliable, consistent information is not enough. As illustrated earlier, the manner in which messages were delivered mattered. Veterans suggested respectful, non-judgmental conversations with providers would be most helpful:
…the [doctors] have like a serious case load, and I know I’m not the only one, so I don’t get mad at that. …But act like you care or that you’re concerned.—55:24
I think that it’d be more helpful if they could remember to treat the patient like it was their own family member. Because though I’m grateful that I’m alive, it’s mentally hard.—62:49
DISCUSSION
We purposively sampled Veterans at different timepoints in their recovery from COVID-19 and of varying severity (ICU, acute care hospitalization, outpatient). This strategy allowed us to reach a variety of perspectives regarding patients’ illness and recovery, experience, treatments, and interactions with the healthcare system. Our findings provide insights that can inform learning healthcare systems28 and anticipate future health crises that may arise in the midst of rapidly developing science, evolving care recommendations, and a highly charged social context.
As Veterans made sense of the COVID-19 experience by comparing their symptoms and treatments to others and researching topics on their own, some came to conclusions that differed from the common public health narrative. These participants reported feelings of being judged and belittled by the media and by others in their lives. Often, this resulted in defensiveness and doubling down on their current beliefs, consistent with Bauder’s finding that “Denigration of individuals with inaccurate beliefs increases misinformation.”22
The role of uncertainty and its impact on healthcare interactions is important context to this study. Participants found the pandemic and the frequently conflicting information about treatment options resulted in overwhelming and frustrating healthcare experiences. As a result, participants used anecdotal evidence from others and information from the internet and social media to guide their decisions about treatments. This finding is consistent with previous studies,23 and with classic decision-making theory in the face of uncertainty: individuals tend to use evidence readily accessible to recall (availability bias) and collect new information consistent with previous beliefs (confirmation bias).29,30,31
Our study highlights the complex relationship that many Veterans have with the government and the VA.16 Some perceived the VA, especially their healthcare providers, as trusted and reliable, while at the same time distrusting other government institutions and their recommendations. For other Veteran participants, poor perceptions of VA-provided healthcare sometimes reinforced negative perceptions of the VA as an institution or the government’s handling of the pandemic. It also raised additional concern and suspicion when Veterans felt communication from their medical providers was inconsistent.22
Interview findings point to strategies to decrease mistrust and improve perceptions of care. Underlying suspicion of government institutions and the media was often curtailed when communication was clear, consistent, and jargon free. Creating standardized talking points and role modelling have been suggested as strategies to address these issues.14 In contrast, communication that is dismissive or “vague” could entrench a patient in pre-existing beliefs, leading to a rejection of professional recommendations.
Consistent with theories of patient trust, providers might anticipate that many patients will approach initial medical information and provider recommendations from different perspectives including, trust, mistrust, and distrust.4 Different messages may be needed for these audiences. Individuals with high levels of trust are more likely to follow direct medical recommendations even when the available evidence base is new and limited.19,21 Many individuals approach new information with mistrust, but this does not necessarily mean that they are unwilling to make changes. In fact, in some instances, mistrusting (skeptical) individuals have been shown to be more likely to change their behavior than other groups when provided with sufficient information to make an informed decision.4 Such individuals may benefit from the availability of a review of the quality and strength of existing evidence paired with the direct, clear topline recommendations. While conducting shared decision-making using patient decision aids that outline and review existing evidence in the context of an encounter represent one example of this strategy,32 COVID-19 presented a particularly significant challenge to this option. It was not feasible to evaluate and synthesize rapidly changing information to produce a decision aid, particularly in the first years of the pandemic. Finally, some individuals approach medical advice and recommendations with distrust, reacting with defiance and detachment to information perceived as authoritarian. Although there is little evidence suggesting what does work with this group of individuals, existing data suggest that messages perceived as confrontational were not likely to be effective22 including examples from our findings (“We’re not stupid, we’re just smart enough to listen to other people, other professionals” and “I informed them that I hadn’t been vaccinated, at which point they became very derogatory, …care went downhill…”).
Our findings also reflect growing recognition that patients receive information from a variety of sources including friends, relatives, and the media. Several studies have found that patients frequently bring outside (e.g., internet-based) health information to medical visits33 and they are more likely to ignore provider recommendations that conflict with this information.34 Appointment satisfaction is often higher when discussion of outside information is integrated into a visit instead of being ignored.35
Notably, in our data, participants repeatedly stated that they valued relationships with their healthcare providers and what the medical staff around them did (re: vaccines) or shared (re: experience with the disease). Veterans expressed more receptivity to information when healthcare staff responded to their questions in a respectful, personable way (“…if you were my dad, I’d tell you to get the shot”) and delivered their message with compassion and opportunities for bi-directional discussion, without judgment or dismissiveness.14,20,22 This finding is consistent with broader literature suggesting that when patients perceive their provider as authentic (characterized by respect, engagement, close listening, mutual participation, and provider self-awareness) and a good communicator, they are more likely to adhere to recommendations.37,38 Such relationships, in turn, may even help to re-establish trust in government health agencies.36
Strengths and Limitations
As with all participant-centered research, self-selection bias is possible. Veterans with lower trust of the VA may have been less likely to participate. Interviews elicited Veterans’ subjective experiences of important but also broad constructs that are difficult to operationalize (e.g., what is clear communication, how much disclosure of uncertainty about medical recommendations is useful, what specific kinds of outside medical information did Veterans seek out and trust). Future studies will be necessary to further develop the insights provided by this study. For a qualitative study, the sample (94 interviewees) is substantive and diverse—recruited across symptom severity (outpatient, hospitalized, ICU) and time (weeks, months, up to a year from diagnosis or hospitalization), and a range of ages, allowing a variety of perspectives to emerge. While these qualitative findings are not intended to be generalizable, they do provide important insights into how patients made sense of their disease, treatment, and preventative options during a politicized pandemic. A notable strength of this work is the holistic focus on experience with the disease, recovery, and any treatments—not just vaccine perceptions. Further, conducting the study in the VA provided important information about the relationship between trust in the government and trust in healthcare services. Future research might systematically examine differences between Veterans’ perception of trust and care with VA and with non-VA providers.
Conclusion
We found that in the context of a new-disease pandemic, Veterans sought to make sense of their own COVID-19 experiences by comparing themselves to others and relying on their own research; furthermore, they valued healthcare providers’ personal stories above expertise and empathetic and respectful communication resonated best. These findings provide insight about what patients value most and offer guidance for overcoming preconceived notions to increase acceptance of and adherence to evidence-based healthcare.
Data Availability
Audio files and transcripts are not available for review because of the risk of participant identification. De-identified limited data supporting the reported findings are available within the article.
References
COVID-19 National Summary | Veterans Affairs. Accessed June 10, 2024. https://www.accesstocare.va.gov/Healthcare/COVID19NationalSummary
Klompas M, Jones BE. Is COVID-19 care better in veterans health administration hospitals, ceteris paribus? JAMA Netw Open. 2023;6(5):e2315829-e2315829.
Barsky C, Camarillo E. The impacts of politicization on public health workers: the COVID-19 pandemic in Oregon and Montana. J Health Polit Policy Law. 2023;48(6):859-888.
Jennings W, Stoker G, Valgarðsson V, Devine D, Gaskell J. How trust, mistrust and distrust shape the governance of the COVID-19 crisis. J Eur Public Policy. 2021;28(8):1174-1196.
McLaughlin DM, Mewhirter J, Sanders R. The belief that politics drive scientific research & its impact on COVID-19 risk assessment. Plos One. 2021;16(4):e0249937.
Post S, Bienzeisler N, Lohöfener M. A desire for authoritative science? How citizens’ informational needs and epistemic beliefs shaped their views of science, news, and policymaking in the COVID-19 pandemic. Public Underst Sci. 2021;30(5):496-514.
Rothgerber H, Wilson T, Whaley D, et al. Politicizing the COVID-19 pandemic: ideological differences in adherence to social distancing. Published online 2020.
Van Scoy LJ, Snyder B, Miller EL, et al. Public anxiety and distrust due to perceived politicization and media sensationalism during early COVID-19 media messaging. J Commun Healthc. 2021;14(3):193-205.
Young DG, Bleakley A. Ideological health spirals: An integrated political and health communication approach to COVID interventions. Int J Commun. 2020;14:17.
Zhou A, Liu W, Yang A, et al. Playing politics or straight talk of science?: Comparing politicization of COVID-19 vaccines by US politicians, medical experts, and government agencies on social media. Published online 2022.
Aashima, Nanda M, Sharma R. A review of patient satisfaction and experience with telemedicine: a virtual solution during and beyond COVID-19 pandemic. Telemed E-Health. 2021;27(12):1325-1331.
Aguirre S, Jogerst KM, Ginsberg Z, et al. COVID-19 impact on the doctor-patient relationship: patient perspectives on emergency physician empathy and communication. Bull Emerg Trauma. 2021;9(3):125.
Aissa Suciu G, Baban A. Vaccine decision-making influences-insights from severe COVID-19 survivors: A Qualitative Study. Med Clin Res 9 1 01. 2024;9.
Brauer E, Choi K, Chang J, et al. Health care providers’ trusted sources for information about COVID-19 vaccines: mixed methods study. JMIR Infodemiology. 2021;1(1):e33330.
Elwy AR, Clayman ML, LoBrutto L, et al. Vaccine hesitancy as an opportunity for engagement: A rapid qualitative study of patients and employees in the US Veterans Affairs healthcare system. Vaccine X. 2021;9:100116.
Jasuja GK, Meterko M, Bradshaw LD, et al. Attitudes and intentions of US veterans regarding COVID-19 vaccination. JAMA Netw Open. 2021;4(11):e2132548-e2132548.
Bogart LM, Ojikutu BO, Tyagi K, et al. COVID-19 related medical mistrust, health impacts, and potential vaccine hesitancy among Black Americans living with HIV. JAIDS J Acquir Immune Defic Syndr. 2021;86(2):200-207.
Ojikutu BO, Stephenson KE, Mayer KH, Emmons KM. Building trust in COVID-19 vaccines and beyond through authentic community investment. Published online 2021.
Quinn SC, Jamison AM, Freimuth V. Communicating effectively about emergency use authorization and vaccines in the COVID-19 pandemic. Published online 2020.
Tarzian AJ, Geppert CM. The Veterans Health Administration approach to COVID-19 vaccine allocation—balancing utility and equity. Fed Pract. 2021;38(2):52.
Quinn SC, Kumar S, Freimuth VS, Kidwell K, Musa D. Public Willingness to Take a Vaccine or Drug Under Emergency Use Authorization during the 2009 H1N1 Pandemic. Biosecurity Bioterrorism Biodefense Strategy Pract Sci. 2009;7(3):275-290. https://doi.org/10.1089/bsp.2009.0041
Bauder L, Giangobbe K, Asgary R. Barriers and gaps in effective health communication at both public health and healthcare delivery levels during epidemics and pandemics; systematic review. Disaster Med Public Health Prep. 2023;17:e395.
Van Scoy LJ, Duda SH, Scott AM, et al. A mixed methods study exploring requests for unproven COVID therapies such as ivermectin and healthcare distrust in the rural South. Prev Med Rep. 2023;31:102104.
Whole Health | Veterans Affairs. Accessed June 10, 2024. https://www.va.gov/wholehealth/
Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008;62(1):107-115.
ATLAS.ti Scientific Software Development GmbH. Published online 2022. Accessed August 5, 2024. https://atlasti.com
Halling S, Lilleleht E, Krycka KC, Sayre G. Vital researcher conversations: pivoting past impasses in qualitative research. J Humanist Psychol. Published online 2017:0022167817722020.
Kilbourne AM, Schmidt J, Edmunds M, Vega R, Bowersox N, Atkins D. How the VA is training the Next‐Generation workforce for learning health systems. Learn Health Syst. 2022;6(4). Accessed August 26, 2024. https://onlinelibrary.wiley.com/doi/full/10.1002/lrh2.10333
Li T, Jager W. How availability heuristic, confirmation bias and fear may drive societal polarisation: an opinion dynamics simulation of the case of COVID-19 vaccination. J Artif Soc Soc Simul. 2023;26(4):2.
Lord CG, Ross L, Lepper MR. Biased assimilation and attitude polarization: The effects of prior theories on subsequently considered evidence. J Pers Soc Psychol. 1979;37(11):2098.
Tversky A, Kahneman D. Judgment under uncertainty: heuristics and biases: biases in judgments reveal some heuristics of thinking under uncertainty. Science. 1974;185(4157):1124-1131.
Abrams EM, Shaker M, Oppenheimer J, Davis RS, Bukstein DA, Greenhawt M. The challenges and opportunities for shared decision making highlighted by COVID-19. J Allergy Clin Immunol Pract. 2020;8(8):2474-2480.
Tan SSL, Goonawardene N. Internet health information seeking and the patient-physician relationship: a systematic review. J Med Internet Res. 2017;19(1):e9.
Sommerhalder K, Abraham A, Zufferey MC, Barth J, Abel T. Internet information and medical consultations: experiences from patients’ and physicians’ perspectives. Patient Educ Couns. 2009;77(2):266-271.
Hay MC, Cadigan RJ, Khanna D, et al. Prepared patients: Internet information seeking by new rheumatology patients. Arthritis Care Res. 2008;59(4):575-582. https://doi.org/10.1002/art.23533
Mainous III AG, Essa J, Medley JF. The patient-physician relationship may be the key to re-establishing public trust in recommendations from government health agencies. Fam Med. 2023;55(8):503.
Zolnierek KBH, DiMatteo MR. Physician communication and patient adherence to treatment: a meta-analysis. Med Care. 2009;47(8):826-834.
Fuehrer S, Weil A, Osterberg LG, Zulman DM, Meunier MR, Schwartz R. Building authentic connection in the patient-physician relationship. J Prim Care Community Health. 2024;15:21501319231225996. https://doi.org/10.1177/21501319231225996
Acknowledgements:
The authors would like to express gratitude to Reyhaneh Nikzad, John Kundzins, and the rest of the LAUREL team for their invaluable work in support of this research, and to the Veterans interviewed for their time and for sharing their experiences.
Funding
This project was funded by VA Office of Rehabilitation Research and Development (VA RR&D RX003666). The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the US Department of Veterans Affairs or the University of Washington. Support for VA/CMS data was provided by the Department of Veterans Affairs, Office of Research and Development, VA Information Resource Center (project numbers SDR 02-237 and 98-004).
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Petrova, V.V., Turner, A.P., Simons, C. et al. Veterans’ Experiences with COVID-19 and How Providers Can Shape Care and Perception with Empathy. J GEN INTERN MED (2025). https://doi.org/10.1007/s11606-025-09557-9
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DOI: https://doi.org/10.1007/s11606-025-09557-9