quantitative research questions about covid 19 pandemic

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11 questions to ask about covid-19 research, how can you tell if a scientific study about the pandemic is valid and useful we have some tips..

Debates have raged on social media, around dinner tables, on TV, and in Congress about the science of COVID-19. Is it really worse than the flu? How necessary are lockdowns? Do masks work to prevent infection? What kinds of masks work best? Is the new vaccine safe?

You might see friends, relatives, and coworkers offer competing answers, often brandishing studies or citing individual doctors and scientists to support their positions. With so much disagreement—and with such high stakes—how can we use science to make the best decisions?

Here at Greater Good , we cover research into social and emotional well-being, and we try to help people apply findings to their personal and professional lives. We are well aware that our business is a tricky one.

Summarizing scientific studies and distilling the key insights that people can apply to their lives isn’t just difficult for the obvious reasons, like understanding and then explaining formal science terms or rigorous empirical and analytic methods to non-specialists. It’s also the case that context gets lost when we translate findings into stories, tips, and tools, especially when we push it all through the nuance-squashing machine of the Internet. Many people rarely read past the headlines, which intrinsically aim to be relatable and provoke interest in as many people as possible. Because our articles can never be as comprehensive as the original studies, they almost always omit some crucial caveats, such as limitations acknowledged by the researchers. To get those, you need access to the studies themselves.

And it’s very common for findings and scientists to seem to contradict each other. For example, there were many contradictory findings and recommendations about the use of masks, especially at the beginning of the pandemic—though as we’ll discuss, it’s important to understand that a scientific consensus did emerge.

Given the complexities and ambiguities of the scientific endeavor, is it possible for a non-scientist to strike a balance between wholesale dismissal and uncritical belief? Are there red flags to look for when you read about a study on a site like Greater Good or hear about one on a Fox News program? If you do read an original source study, how should you, as a non-scientist, gauge its credibility?

Here are 11 questions you might ask when you read about the latest scientific findings about the pandemic, based on our own work here at Greater Good.

1. Did the study appear in a peer-reviewed journal?

In peer review, submitted articles are sent to other experts for detailed critical input that often must be addressed in a revision prior to being accepted and published. This remains one of the best ways we have for ascertaining the rigor of the study and rationale for its conclusions. Many scientists describe peer review as a truly humbling crucible. If a study didn’t go through this process, for whatever reason, it should be taken with a much bigger grain of salt. 

“When thinking about the coronavirus studies, it is important to note that things were happening so fast that in the beginning people were releasing non-peer reviewed, observational studies,” says Dr. Leif Hass, a family medicine doctor and hospitalist at Sutter Health’s Alta Bates Summit Medical Center in Oakland, California. “This is what we typically do as hypothesis-generating but given the crisis, we started acting on them.”

In a confusing, time-pressed, fluid situation like the one COVID-19 presented, people without medical training have often been forced to simply defer to expertise in making individual and collective decisions, turning to culturally vetted institutions like the Centers for Disease Control (CDC). Is that wise? Read on.

2. Who conducted the study, and where did it appear?

“I try to listen to the opinion of people who are deep in the field being addressed and assess their response to the study at hand,” says Hass. “With the MRNA coronavirus vaccines, I heard Paul Offit from UPenn at a UCSF Grand Rounds talk about it. He literally wrote the book on vaccines. He reviewed what we know and gave the vaccine a big thumbs up. I was sold.”

From a scientific perspective, individual expertise and accomplishment matters—but so does institutional affiliation.

Why? Because institutions provide a framework for individual accountability as well as safety guidelines. At UC Berkeley, for example , research involving human subjects during COVID-19 must submit a Human Subjects Proposal Supplement Form , and follow a standard protocol and rigorous guidelines . Is this process perfect? No. It’s run by humans and humans are imperfect. However, the conclusions are far more reliable than opinions offered by someone’s favorite YouTuber .

Recommendations coming from institutions like the CDC should not be accepted uncritically. At the same time, however, all of us—including individuals sporting a “Ph.D.” or “M.D.” after their names—must be humble in the face of them. The CDC represents a formidable concentration of scientific talent and knowledge that dwarfs the perspective of any one individual. In a crisis like COVID-19, we need to defer to that expertise, at least conditionally.

“If we look at social media, things could look frightening,” says Hass. When hundreds of millions of people are vaccinated, millions of them will be afflicted anyway, in the course of life, by conditions like strokes, anaphylaxis, and Bell’s palsy. “We have to have faith that people collecting the data will let us know if we are seeing those things above the baseline rate.”

3. Who was studied, and where?

Animal experiments tell scientists a lot, but their applicability to our daily human lives will be limited. Similarly, if researchers only studied men, the conclusions might not be relevant to women, and vice versa.

Many psychology studies rely on WEIRD (Western, educated, industrialized, rich and democratic) participants, mainly college students, which creates an in-built bias in the discipline’s conclusions. Historically, biomedical studies also bias toward gathering measures from white male study participants, which again, limits generalizability of findings. Does that mean you should dismiss Western science? Of course not. It’s just the equivalent of a “Caution,” “Yield,” or “Roadwork Ahead” sign on the road to understanding.

This applies to the coronavirus vaccines now being distributed and administered around the world. The vaccines will have side effects; all medicines do. Those side effects will be worse for some people than others, depending on their genetic inheritance, medical status, age, upbringing, current living conditions, and other factors.

For Hass, it amounts to this question: Will those side effects be worse, on balance, than COVID-19, for most people?

“When I hear that four in 100,000 [of people in the vaccine trials] had Bell’s palsy, I know that it would have been a heck of a lot worse if 100,000 people had COVID. Three hundred people would have died and many others been stuck with chronic health problems.”

4. How big was the sample?

In general, the more participants in a study, the more valid its results. That said, a large sample is sometimes impossible or even undesirable for certain kinds of studies. During COVID-19, limited time has constrained the sample sizes.

However, that acknowledged, it’s still the case that some studies have been much larger than others—and the sample sizes of the vaccine trials can still provide us with enough information to make informed decisions. Doctors and nurses on the front lines of COVID-19—who are now the very first people being injected with the vaccine—think in terms of “biological plausibility,” as Hass says.

Did the admittedly rushed FDA approval of the Pfizer-BioNTech vaccine make sense, given what we already know? Tens of thousands of doctors who have been grappling with COVID-19 are voting with their arms, in effect volunteering to be a sample for their patients. If they didn’t think the vaccine was safe, you can bet they’d resist it. When the vaccine becomes available to ordinary people, we’ll know a lot more about its effects than we do today, thanks to health care providers paving the way.

5. Did the researchers control for key differences, and do those differences apply to you?

Diversity or gender balance aren’t necessarily virtues in experimental research, though ideally a study sample is as representative of the overall population as possible. However, many studies use intentionally homogenous groups, because this allows the researchers to limit the number of different factors that might affect the result.

While good researchers try to compare apples to apples, and control for as many differences as possible in their analyses, running a study always involves trade-offs between what can be accomplished as a function of study design, and how generalizable the findings can be.

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You also need to ask if the specific population studied even applies to you. For example, when one study found that cloth masks didn’t work in “high-risk situations,” it was sometimes used as evidence against mask mandates.

However, a look beyond the headlines revealed that the study was of health care workers treating COVID-19 patients, which is a vastly more dangerous situation than, say, going to the grocery store. Doctors who must intubate patients can end up being splattered with saliva. In that circumstance, one cloth mask won’t cut it. They also need an N95, a face shield, two layers of gloves, and two layers of gown. For the rest of us in ordinary life, masks do greatly reduce community spread, if as many people as possible are wearing them.

6. Was there a control group?

One of the first things to look for in methodology is whether the population tested was randomly selected, whether there was a control group, and whether people were randomly assigned to either group without knowing which one they were in. This is especially important if a study aims to suggest that a certain experience or treatment might actually cause a specific outcome, rather than just reporting a correlation between two variables (see next point).

For example, were some people randomly assigned a specific meditation practice while others engaged in a comparable activity or exercise? If the sample is large enough, randomized trials can produce solid conclusions. But, sometimes, a study will not have a control group because it’s ethically impossible. We can’t, for example, let sick people go untreated just to see what would happen. Biomedical research often makes use of standard “treatment as usual” or placebos in control groups. They also follow careful ethical guidelines to protect patients from both maltreatment and being deprived necessary treatment. When you’re reading about studies of masks, social distancing, and treatments during the COVID-19, you can partially gauge the reliability and validity of the study by first checking if it had a control group. If it didn’t, the findings should be taken as preliminary.

7. Did the researchers establish causality, correlation, dependence, or some other kind of relationship?

We often hear “Correlation is not causation” shouted as a kind of battle cry, to try to discredit a study. But correlation—the degree to which two or more measurements seem connected—is important, and can be a step toward eventually finding causation—that is, establishing a change in one variable directly triggers a change in another. Until then, however, there is no way to ascertain the direction of a correlational relationship (does A change B, or does B change A), or to eliminate the possibility that a third, unmeasured factor is behind the pattern of both variables without further analysis.

In the end, the important thing is to accurately identify the relationship. This has been crucial in understanding steps to counter the spread of COVID-19 like shelter-in-place orders. Just showing that greater compliance with shelter-in-place mandates was associated with lower hospitalization rates is not as conclusive as showing that one community that enacted shelter-in-place mandates had lower hospitalization rates than a different community of similar size and population density that elected not to do so.

We are not the first people to face an infection without understanding the relationships between factors that would lead to more of it. During the bubonic plague, cities would order rodents killed to control infection. They were onto something: Fleas that lived on rodents were indeed responsible. But then human cases would skyrocket.

Why? Because the fleas would migrate off the rodent corpses onto humans, which would worsen infection. Rodent control only reduces bubonic plague if it’s done proactively; once the outbreak starts, killing rats can actually make it worse. Similarly, we can’t jump to conclusions during the COVID-19 pandemic when we see correlations.

8. Are journalists and politicians, or even scientists, overstating the result?

Language that suggests a fact is “proven” by one study or which promotes one solution for all people is most likely overstating the case. Sweeping generalizations of any kind often indicate a lack of humility that should be a red flag to readers. A study may very well “suggest” a certain conclusion but it rarely, if ever, “proves” it.

This is why we use a lot of cautious, hedging language in Greater Good , like “might” or “implies.” This applies to COVID-19 as well. In fact, this understanding could save your life.

When President Trump touted the advantages of hydroxychloroquine as a way to prevent and treat COVID-19, he was dramatically overstating the results of one observational study. Later studies with control groups showed that it did not work—and, in fact, it didn’t work as a preventative for President Trump and others in the White House who contracted COVID-19. Most survived that outbreak, but hydroxychloroquine was not one of the treatments that saved their lives. This example demonstrates how misleading and even harmful overstated results can be, in a global pandemic.

9. Is there any conflict of interest suggested by the funding or the researchers’ affiliations?

A 2015 study found that you could drink lots of sugary beverages without fear of getting fat, as long as you exercised. The funder? Coca Cola, which eagerly promoted the results. This doesn’t mean the results are wrong. But it does suggest you should seek a second opinion : Has anyone else studied the effects of sugary drinks on obesity? What did they find?

It’s possible to take this insight too far. Conspiracy theorists have suggested that “Big Pharma” invented COVID-19 for the purpose of selling vaccines. Thus, we should not trust their own trials showing that the vaccine is safe and effective.

But, in addition to the fact that there is no compelling investigative evidence that pharmaceutical companies created the virus, we need to bear in mind that their trials didn’t unfold in a vacuum. Clinical trials were rigorously monitored and independently reviewed by third-party entities like the World Health Organization and government organizations around the world, like the FDA in the United States.

Does that completely eliminate any risk? Absolutely not. It does mean, however, that conflicts of interest are being very closely monitored by many, many expert eyes. This greatly reduces the probability and potential corruptive influence of conflicts of interest.

10. Do the authors reference preceding findings and original sources?

The scientific method is based on iterative progress, and grounded in coordinating discoveries over time. Researchers study what others have done and use prior findings to guide their own study approaches; every study builds on generations of precedent, and every scientist expects their own discoveries to be usurped by more sophisticated future work. In the study you are reading, do the researchers adequately describe and acknowledge earlier findings, or other key contributions from other fields or disciplines that inform aspects of the research, or the way that they interpret their results?

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This was crucial for the debates that have raged around mask mandates and social distancing. We already knew quite a bit about the efficacy of both in preventing infections, informed by centuries of practical experience and research.

When COVID-19 hit American shores, researchers and doctors did not question the necessity of masks in clinical settings. Here’s what we didn’t know: What kinds of masks would work best for the general public, who should wear them, when should we wear them, were there enough masks to go around, and could we get enough people to adopt best mask practices to make a difference in the specific context of COVID-19 ?

Over time, after a period of confusion and contradictory evidence, those questions have been answered . The very few studies that have suggested masks don’t work in stopping COVID-19 have almost all failed to account for other work on preventing the disease, and had results that simply didn’t hold up. Some were even retracted .

So, when someone shares a coronavirus study with you, it’s important to check the date. The implications of studies published early in the pandemic might be more limited and less conclusive than those published later, because the later studies could lean on and learn from previously published work. Which leads us to the next question you should ask in hearing about coronavirus research…

11. Do researchers, journalists, and politicians acknowledge limitations and entertain alternative explanations?

Is the study focused on only one side of the story or one interpretation of the data? Has it failed to consider or refute alternative explanations? Do they demonstrate awareness of which questions are answered and which aren’t by their methods? Do the journalists and politicians communicating the study know and understand these limitations?

When the Annals of Internal Medicine published a Danish study last month on the efficacy of cloth masks, some suggested that it showed masks “make no difference” against COVID-19.

The study was a good one by the standards spelled out in this article. The researchers and the journal were both credible, the study was randomized and controlled, and the sample size (4,862 people) was fairly large. Even better, the scientists went out of their way to acknowledge the limits of their work: “Inconclusive results, missing data, variable adherence, patient-reported findings on home tests, no blinding, and no assessment of whether masks could decrease disease transmission from mask wearers to others.”

Unfortunately, their scientific integrity was not reflected in the ways the study was used by some journalists, politicians, and people on social media. The study did not show that masks were useless. What it did show—and what it was designed to find out—was how much protection masks offered to the wearer under the conditions at the time in Denmark. In fact, the amount of protection for the wearer was not large, but that’s not the whole picture: We don’t wear masks mainly to protect ourselves, but to protect others from infection. Public-health recommendations have stressed that everyone needs to wear a mask to slow the spread of infection.

“We get vaccinated for the greater good, not just to protect ourselves ”

As the authors write in the paper, we need to look to other research to understand the context for their narrow results. In an editorial accompanying the paper in Annals of Internal Medicine , the editors argue that the results, together with existing data in support of masks, “should motivate widespread mask wearing to protect our communities and thereby ourselves.”

Something similar can be said of the new vaccine. “We get vaccinated for the greater good, not just to protect ourselves,” says Hass. “Being vaccinated prevents other people from getting sick. We get vaccinated for the more vulnerable in our community in addition for ourselves.”

Ultimately, the approach we should take to all new studies is a curious but skeptical one. We should take it all seriously and we should take it all with a grain of salt. You can judge a study against your experience, but you need to remember that your experience creates bias. You should try to cultivate humility, doubt, and patience. You might not always succeed; when you fail, try to admit fault and forgive yourself.

Above all, we need to try to remember that science is a process, and that conclusions always raise more questions for us to answer. That doesn’t mean we never have answers; we do. As the pandemic rages and the scientific process unfolds, we as individuals need to make the best decisions we can, with the information we have.

This article was revised and updated from a piece published by Greater Good in 2015, “ 10 Questions to Ask About Scientific Studies .”

About the Authors

Jeremy Adam Smith

Uc berkeley.

Jeremy Adam Smith edits the GGSC’s online magazine, Greater Good . He is also the author or coeditor of five books, including The Daddy Shift , Are We Born Racist? , and (most recently) The Gratitude Project: How the Science of Thankfulness Can Rewire Our Brains for Resilience, Optimism, and the Greater Good . Before joining the GGSC, Jeremy was a John S. Knight Journalism Fellow at Stanford University.

Emiliana R. Simon-Thomas

Emiliana R. Simon-Thomas, Ph.D. , is the science director of the Greater Good Science Center, where she directs the GGSC’s research fellowship program and serves as a co-instructor of its Science of Happiness and Science of Happiness at Work online courses.

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• Research article
• Open access
• Published: 04 June 2021

Coronavirus disease (COVID-19) pandemic: an overview of systematic reviews

• Israel Júnior Borges do Nascimento 1 , 2 ,
• Dónal P. O’Mathúna 3 , 4 ,
• Thilo Caspar von Groote 5 ,
• Hebatullah Mohamed Abdulazeem 6 ,
• Ishanka Weerasekara 7 , 8 ,
• Ana Marusic 9 ,
• Livia Puljak   ORCID: orcid.org/0000-0002-8467-6061 10 ,
• Vinicius Tassoni Civile 11 ,
• Irena Zakarija-Grkovic 9 ,
• Tina Poklepovic Pericic 9 ,
• Alvaro Nagib Atallah 11 ,
• Santino Filoso 12 ,
• Nicola Luigi Bragazzi 13 &
• Milena Soriano Marcolino 1

On behalf of the International Network of Coronavirus Disease 2019 (InterNetCOVID-19)

BMC Infectious Diseases volume  21 , Article number:  525 ( 2021 ) Cite this article

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Navigating the rapidly growing body of scientific literature on the SARS-CoV-2 pandemic is challenging, and ongoing critical appraisal of this output is essential. We aimed to summarize and critically appraise systematic reviews of coronavirus disease (COVID-19) in humans that were available at the beginning of the pandemic.

Nine databases (Medline, EMBASE, Cochrane Library, CINAHL, Web of Sciences, PDQ-Evidence, WHO’s Global Research, LILACS, and Epistemonikos) were searched from December 1, 2019, to March 24, 2020. Systematic reviews analyzing primary studies of COVID-19 were included. Two authors independently undertook screening, selection, extraction (data on clinical symptoms, prevalence, pharmacological and non-pharmacological interventions, diagnostic test assessment, laboratory, and radiological findings), and quality assessment (AMSTAR 2). A meta-analysis was performed of the prevalence of clinical outcomes.

Eighteen systematic reviews were included; one was empty (did not identify any relevant study). Using AMSTAR 2, confidence in the results of all 18 reviews was rated as “critically low”. Identified symptoms of COVID-19 were (range values of point estimates): fever (82–95%), cough with or without sputum (58–72%), dyspnea (26–59%), myalgia or muscle fatigue (29–51%), sore throat (10–13%), headache (8–12%) and gastrointestinal complaints (5–9%). Severe symptoms were more common in men. Elevated C-reactive protein and lactate dehydrogenase, and slightly elevated aspartate and alanine aminotransferase, were commonly described. Thrombocytopenia and elevated levels of procalcitonin and cardiac troponin I were associated with severe disease. A frequent finding on chest imaging was uni- or bilateral multilobar ground-glass opacity. A single review investigated the impact of medication (chloroquine) but found no verifiable clinical data. All-cause mortality ranged from 0.3 to 13.9%.

Conclusions

In this overview of systematic reviews, we analyzed evidence from the first 18 systematic reviews that were published after the emergence of COVID-19. However, confidence in the results of all reviews was “critically low”. Thus, systematic reviews that were published early on in the pandemic were of questionable usefulness. Even during public health emergencies, studies and systematic reviews should adhere to established methodological standards.

Peer Review reports

The spread of the “Severe Acute Respiratory Coronavirus 2” (SARS-CoV-2), the causal agent of COVID-19, was characterized as a pandemic by the World Health Organization (WHO) in March 2020 and has triggered an international public health emergency [ 1 ]. The numbers of confirmed cases and deaths due to COVID-19 are rapidly escalating, counting in millions [ 2 ], causing massive economic strain, and escalating healthcare and public health expenses [ 3 , 4 ].

The research community has responded by publishing an impressive number of scientific reports related to COVID-19. The world was alerted to the new disease at the beginning of 2020 [ 1 ], and by mid-March 2020, more than 2000 articles had been published on COVID-19 in scholarly journals, with 25% of them containing original data [ 5 ]. The living map of COVID-19 evidence, curated by the Evidence for Policy and Practice Information and Co-ordinating Centre (EPPI-Centre), contained more than 40,000 records by February 2021 [ 6 ]. More than 100,000 records on PubMed were labeled as “SARS-CoV-2 literature, sequence, and clinical content” by February 2021 [ 7 ].

Due to publication speed, the research community has voiced concerns regarding the quality and reproducibility of evidence produced during the COVID-19 pandemic, warning of the potential damaging approach of “publish first, retract later” [ 8 ]. It appears that these concerns are not unfounded, as it has been reported that COVID-19 articles were overrepresented in the pool of retracted articles in 2020 [ 9 ]. These concerns about inadequate evidence are of major importance because they can lead to poor clinical practice and inappropriate policies [ 10 ].

Systematic reviews are a cornerstone of today’s evidence-informed decision-making. By synthesizing all relevant evidence regarding a particular topic, systematic reviews reflect the current scientific knowledge. Systematic reviews are considered to be at the highest level in the hierarchy of evidence and should be used to make informed decisions. However, with high numbers of systematic reviews of different scope and methodological quality being published, overviews of multiple systematic reviews that assess their methodological quality are essential [ 11 , 12 , 13 ]. An overview of systematic reviews helps identify and organize the literature and highlights areas of priority in decision-making.

In this overview of systematic reviews, we aimed to summarize and critically appraise systematic reviews of coronavirus disease (COVID-19) in humans that were available at the beginning of the pandemic.

Methodology

Research question.

This overview’s primary objective was to summarize and critically appraise systematic reviews that assessed any type of primary clinical data from patients infected with SARS-CoV-2. Our research question was purposefully broad because we wanted to analyze as many systematic reviews as possible that were available early following the COVID-19 outbreak.

Study design

We conducted an overview of systematic reviews. The idea for this overview originated in a protocol for a systematic review submitted to PROSPERO (CRD42020170623), which indicated a plan to conduct an overview.

Overviews of systematic reviews use explicit and systematic methods for searching and identifying multiple systematic reviews addressing related research questions in the same field to extract and analyze evidence across important outcomes. Overviews of systematic reviews are in principle similar to systematic reviews of interventions, but the unit of analysis is a systematic review [ 14 , 15 , 16 ].

We used the overview methodology instead of other evidence synthesis methods to allow us to collate and appraise multiple systematic reviews on this topic, and to extract and analyze their results across relevant topics [ 17 ]. The overview and meta-analysis of systematic reviews allowed us to investigate the methodological quality of included studies, summarize results, and identify specific areas of available or limited evidence, thereby strengthening the current understanding of this novel disease and guiding future research [ 13 ].

A reporting guideline for overviews of reviews is currently under development, i.e., Preferred Reporting Items for Overviews of Reviews (PRIOR) [ 18 ]. As the PRIOR checklist is still not published, this study was reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2009 statement [ 19 ]. The methodology used in this review was adapted from the Cochrane Handbook for Systematic Reviews of Interventions and also followed established methodological considerations for analyzing existing systematic reviews [ 14 ].

Approval of a research ethics committee was not necessary as the study analyzed only publicly available articles.

Eligibility criteria

Systematic reviews were included if they analyzed primary data from patients infected with SARS-CoV-2 as confirmed by RT-PCR or another pre-specified diagnostic technique. Eligible reviews covered all topics related to COVID-19 including, but not limited to, those that reported clinical symptoms, diagnostic methods, therapeutic interventions, laboratory findings, or radiological results. Both full manuscripts and abbreviated versions, such as letters, were eligible.

No restrictions were imposed on the design of the primary studies included within the systematic reviews, the last search date, whether the review included meta-analyses or language. Reviews related to SARS-CoV-2 and other coronaviruses were eligible, but from those reviews, we analyzed only data related to SARS-CoV-2.

No consensus definition exists for a systematic review [ 20 ], and debates continue about the defining characteristics of a systematic review [ 21 ]. Cochrane’s guidance for overviews of reviews recommends setting pre-established criteria for making decisions around inclusion [ 14 ]. That is supported by a recent scoping review about guidance for overviews of systematic reviews [ 22 ].

Thus, for this study, we defined a systematic review as a research report which searched for primary research studies on a specific topic using an explicit search strategy, had a detailed description of the methods with explicit inclusion criteria provided, and provided a summary of the included studies either in narrative or quantitative format (such as a meta-analysis). Cochrane and non-Cochrane systematic reviews were considered eligible for inclusion, with or without meta-analysis, and regardless of the study design, language restriction and methodology of the included primary studies. To be eligible for inclusion, reviews had to be clearly analyzing data related to SARS-CoV-2 (associated or not with other viruses). We excluded narrative reviews without those characteristics as these are less likely to be replicable and are more prone to bias.

Scoping reviews and rapid reviews were eligible for inclusion in this overview if they met our pre-defined inclusion criteria noted above. We included reviews that addressed SARS-CoV-2 and other coronaviruses if they reported separate data regarding SARS-CoV-2.

Information sources

Nine databases were searched for eligible records published between December 1, 2019, and March 24, 2020: Cochrane Database of Systematic Reviews via Cochrane Library, PubMed, EMBASE, CINAHL (Cumulative Index to Nursing and Allied Health Literature), Web of Sciences, LILACS (Latin American and Caribbean Health Sciences Literature), PDQ-Evidence, WHO’s Global Research on Coronavirus Disease (COVID-19), and Epistemonikos.

The comprehensive search strategy for each database is provided in Additional file 1 and was designed and conducted in collaboration with an information specialist. All retrieved records were primarily processed in EndNote, where duplicates were removed, and records were then imported into the Covidence platform [ 23 ]. In addition to database searches, we screened reference lists of reviews included after screening records retrieved via databases.

Study selection

All searches, screening of titles and abstracts, and record selection, were performed independently by two investigators using the Covidence platform [ 23 ]. Articles deemed potentially eligible were retrieved for full-text screening carried out independently by two investigators. Discrepancies at all stages were resolved by consensus. During the screening, records published in languages other than English were translated by a native/fluent speaker.

Data collection process

We custom designed a data extraction table for this study, which was piloted by two authors independently. Data extraction was performed independently by two authors. Conflicts were resolved by consensus or by consulting a third researcher.

We extracted the following data: article identification data (authors’ name and journal of publication), search period, number of databases searched, population or settings considered, main results and outcomes observed, and number of participants. From Web of Science (Clarivate Analytics, Philadelphia, PA, USA), we extracted journal rank (quartile) and Journal Impact Factor (JIF).

We categorized the following as primary outcomes: all-cause mortality, need for and length of mechanical ventilation, length of hospitalization (in days), admission to intensive care unit (yes/no), and length of stay in the intensive care unit.

The following outcomes were categorized as exploratory: diagnostic methods used for detection of the virus, male to female ratio, clinical symptoms, pharmacological and non-pharmacological interventions, laboratory findings (full blood count, liver enzymes, C-reactive protein, d-dimer, albumin, lipid profile, serum electrolytes, blood vitamin levels, glucose levels, and any other important biomarkers), and radiological findings (using radiography, computed tomography, magnetic resonance imaging or ultrasound).

We also collected data on reporting guidelines and requirements for the publication of systematic reviews and meta-analyses from journal websites where included reviews were published.

Quality assessment in individual reviews

Two researchers independently assessed the reviews’ quality using the “A MeaSurement Tool to Assess Systematic Reviews 2 (AMSTAR 2)”. We acknowledge that the AMSTAR 2 was created as “a critical appraisal tool for systematic reviews that include randomized or non-randomized studies of healthcare interventions, or both” [ 24 ]. However, since AMSTAR 2 was designed for systematic reviews of intervention trials, and we included additional types of systematic reviews, we adjusted some AMSTAR 2 ratings and reported these in Additional file 2 .

Adherence to each item was rated as follows: yes, partial yes, no, or not applicable (such as when a meta-analysis was not conducted). The overall confidence in the results of the review is rated as “critically low”, “low”, “moderate” or “high”, according to the AMSTAR 2 guidance based on seven critical domains, which are items 2, 4, 7, 9, 11, 13, 15 as defined by AMSTAR 2 authors [ 24 ]. We reported our adherence ratings for transparency of our decision with accompanying explanations, for each item, in each included review.

One of the included systematic reviews was conducted by some members of this author team [ 25 ]. This review was initially assessed independently by two authors who were not co-authors of that review to prevent the risk of bias in assessing this study.

Synthesis of results

For data synthesis, we prepared a table summarizing each systematic review. Graphs illustrating the mortality rate and clinical symptoms were created. We then prepared a narrative summary of the methods, findings, study strengths, and limitations.

For analysis of the prevalence of clinical outcomes, we extracted data on the number of events and the total number of patients to perform proportional meta-analysis using RStudio© software, with the “meta” package (version 4.9–6), using the “metaprop” function for reviews that did not perform a meta-analysis, excluding case studies because of the absence of variance. For reviews that did not perform a meta-analysis, we presented pooled results of proportions with their respective confidence intervals (95%) by the inverse variance method with a random-effects model, using the DerSimonian-Laird estimator for τ 2 . We adjusted data using Freeman-Tukey double arcosen transformation. Confidence intervals were calculated using the Clopper-Pearson method for individual studies. We created forest plots using the RStudio© software, with the “metafor” package (version 2.1–0) and “forest” function.

Managing overlapping systematic reviews

Some of the included systematic reviews that address the same or similar research questions may include the same primary studies in overviews. Including such overlapping reviews may introduce bias when outcome data from the same primary study are included in the analyses of an overview multiple times. Thus, in summaries of evidence, multiple-counting of the same outcome data will give data from some primary studies too much influence [ 14 ]. In this overview, we did not exclude overlapping systematic reviews because, according to Cochrane’s guidance, it may be appropriate to include all relevant reviews’ results if the purpose of the overview is to present and describe the current body of evidence on a topic [ 14 ]. To avoid any bias in summary estimates associated with overlapping reviews, we generated forest plots showing data from individual systematic reviews, but the results were not pooled because some primary studies were included in multiple reviews.

Our search retrieved 1063 publications, of which 175 were duplicates. Most publications were excluded after the title and abstract analysis ( n = 860). Among the 28 studies selected for full-text screening, 10 were excluded for the reasons described in Additional file 3 , and 18 were included in the final analysis (Fig. 1 ) [ 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 ]. Reference list screening did not retrieve any additional systematic reviews.

PRISMA flow diagram

Characteristics of included reviews

Summary features of 18 systematic reviews are presented in Table 1 . They were published in 14 different journals. Only four of these journals had specific requirements for systematic reviews (with or without meta-analysis): European Journal of Internal Medicine, Journal of Clinical Medicine, Ultrasound in Obstetrics and Gynecology, and Clinical Research in Cardiology . Two journals reported that they published only invited reviews ( Journal of Medical Virology and Clinica Chimica Acta ). Three systematic reviews in our study were published as letters; one was labeled as a scoping review and another as a rapid review (Table 2 ).

All reviews were published in English, in first quartile (Q1) journals, with JIF ranging from 1.692 to 6.062. One review was empty, meaning that its search did not identify any relevant studies; i.e., no primary studies were included [ 36 ]. The remaining 17 reviews included 269 unique studies; the majority ( N = 211; 78%) were included in only a single review included in our study (range: 1 to 12). Primary studies included in the reviews were published between December 2019 and March 18, 2020, and comprised case reports, case series, cohorts, and other observational studies. We found only one review that included randomized clinical trials [ 38 ]. In the included reviews, systematic literature searches were performed from 2019 (entire year) up to March 9, 2020. Ten systematic reviews included meta-analyses. The list of primary studies found in the included systematic reviews is shown in Additional file 4 , as well as the number of reviews in which each primary study was included.

Population and study designs

Most of the reviews analyzed data from patients with COVID-19 who developed pneumonia, acute respiratory distress syndrome (ARDS), or any other correlated complication. One review aimed to evaluate the effectiveness of using surgical masks on preventing transmission of the virus [ 36 ], one review was focused on pediatric patients [ 34 ], and one review investigated COVID-19 in pregnant women [ 37 ]. Most reviews assessed clinical symptoms, laboratory findings, or radiological results.

Systematic review findings

The summary of findings from individual reviews is shown in Table 2 . Overall, all-cause mortality ranged from 0.3 to 13.9% (Fig. 2 ).

A meta-analysis of the prevalence of mortality

Clinical symptoms

Seven reviews described the main clinical manifestations of COVID-19 [ 26 , 28 , 29 , 34 , 35 , 39 , 41 ]. Three of them provided only a narrative discussion of symptoms [ 26 , 34 , 35 ]. In the reviews that performed a statistical analysis of the incidence of different clinical symptoms, symptoms in patients with COVID-19 were (range values of point estimates): fever (82–95%), cough with or without sputum (58–72%), dyspnea (26–59%), myalgia or muscle fatigue (29–51%), sore throat (10–13%), headache (8–12%), gastrointestinal disorders, such as diarrhea, nausea or vomiting (5.0–9.0%), and others (including, in one study only: dizziness 12.1%) (Figs. 3 , 4 , 5 , 6 , 7 , 8 and 9 ). Three reviews assessed cough with and without sputum together; only one review assessed sputum production itself (28.5%).

A meta-analysis of the prevalence of fever

A meta-analysis of the prevalence of cough

A meta-analysis of the prevalence of dyspnea

A meta-analysis of the prevalence of fatigue or myalgia

A meta-analysis of the prevalence of headache

A meta-analysis of the prevalence of gastrointestinal disorders

A meta-analysis of the prevalence of sore throat

Diagnostic aspects

Three reviews described methodologies, protocols, and tools used for establishing the diagnosis of COVID-19 [ 26 , 34 , 38 ]. The use of respiratory swabs (nasal or pharyngeal) or blood specimens to assess the presence of SARS-CoV-2 nucleic acid using RT-PCR assays was the most commonly used diagnostic method mentioned in the included studies. These diagnostic tests have been widely used, but their precise sensitivity and specificity remain unknown. One review included a Chinese study with clinical diagnosis with no confirmation of SARS-CoV-2 infection (patients were diagnosed with COVID-19 if they presented with at least two symptoms suggestive of COVID-19, together with laboratory and chest radiography abnormalities) [ 34 ].

Therapeutic possibilities

Pharmacological and non-pharmacological interventions (supportive therapies) used in treating patients with COVID-19 were reported in five reviews [ 25 , 27 , 34 , 35 , 38 ]. Antivirals used empirically for COVID-19 treatment were reported in seven reviews [ 25 , 27 , 34 , 35 , 37 , 38 , 41 ]; most commonly used were protease inhibitors (lopinavir, ritonavir, darunavir), nucleoside reverse transcriptase inhibitor (tenofovir), nucleotide analogs (remdesivir, galidesivir, ganciclovir), and neuraminidase inhibitors (oseltamivir). Umifenovir, a membrane fusion inhibitor, was investigated in two studies [ 25 , 35 ]. Possible supportive interventions analyzed were different types of oxygen supplementation and breathing support (invasive or non-invasive ventilation) [ 25 ]. The use of antibiotics, both empirically and to treat secondary pneumonia, was reported in six studies [ 25 , 26 , 27 , 34 , 35 , 38 ]. One review specifically assessed evidence on the efficacy and safety of the anti-malaria drug chloroquine [ 27 ]. It identified 23 ongoing trials investigating the potential of chloroquine as a therapeutic option for COVID-19, but no verifiable clinical outcomes data. The use of mesenchymal stem cells, antifungals, and glucocorticoids were described in four reviews [ 25 , 34 , 35 , 38 ].

Laboratory and radiological findings

Of the 18 reviews included in this overview, eight analyzed laboratory parameters in patients with COVID-19 [ 25 , 29 , 30 , 32 , 33 , 34 , 35 , 39 ]; elevated C-reactive protein levels, associated with lymphocytopenia, elevated lactate dehydrogenase, as well as slightly elevated aspartate and alanine aminotransferase (AST, ALT) were commonly described in those eight reviews. Lippi et al. assessed cardiac troponin I (cTnI) [ 25 ], procalcitonin [ 32 ], and platelet count [ 33 ] in COVID-19 patients. Elevated levels of procalcitonin [ 32 ] and cTnI [ 30 ] were more likely to be associated with a severe disease course (requiring intensive care unit admission and intubation). Furthermore, thrombocytopenia was frequently observed in patients with complicated COVID-19 infections [ 33 ].

Chest imaging (chest radiography and/or computed tomography) features were assessed in six reviews, all of which described a frequent pattern of local or bilateral multilobar ground-glass opacity [ 25 , 34 , 35 , 39 , 40 , 41 ]. Those six reviews showed that septal thickening, bronchiectasis, pleural and cardiac effusions, halo signs, and pneumothorax were observed in patients suffering from COVID-19.

Quality of evidence in individual systematic reviews

Table 3 shows the detailed results of the quality assessment of 18 systematic reviews, including the assessment of individual items and summary assessment. A detailed explanation for each decision in each review is available in Additional file 5 .

Using AMSTAR 2 criteria, confidence in the results of all 18 reviews was rated as “critically low” (Table 3 ). Common methodological drawbacks were: omission of prospective protocol submission or publication; use of inappropriate search strategy: lack of independent and dual literature screening and data-extraction (or methodology unclear); absence of an explanation for heterogeneity among the studies included; lack of reasons for study exclusion (or rationale unclear).

Risk of bias assessment, based on a reported methodological tool, and quality of evidence appraisal, in line with the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) method, were reported only in one review [ 25 ]. Five reviews presented a table summarizing bias, using various risk of bias tools [ 25 , 29 , 39 , 40 , 41 ]. One review analyzed “study quality” [ 37 ]. One review mentioned the risk of bias assessment in the methodology but did not provide any related analysis [ 28 ].

This overview of systematic reviews analyzed the first 18 systematic reviews published after the onset of the COVID-19 pandemic, up to March 24, 2020, with primary studies involving more than 60,000 patients. Using AMSTAR-2, we judged that our confidence in all those reviews was “critically low”. Ten reviews included meta-analyses. The reviews presented data on clinical manifestations, laboratory and radiological findings, and interventions. We found no systematic reviews on the utility of diagnostic tests.

Symptoms were reported in seven reviews; most of the patients had a fever, cough, dyspnea, myalgia or muscle fatigue, and gastrointestinal disorders such as diarrhea, nausea, or vomiting. Olfactory dysfunction (anosmia or dysosmia) has been described in patients infected with COVID-19 [ 43 ]; however, this was not reported in any of the reviews included in this overview. During the SARS outbreak in 2002, there were reports of impairment of the sense of smell associated with the disease [ 44 , 45 ].

The reported mortality rates ranged from 0.3 to 14% in the included reviews. Mortality estimates are influenced by the transmissibility rate (basic reproduction number), availability of diagnostic tools, notification policies, asymptomatic presentations of the disease, resources for disease prevention and control, and treatment facilities; variability in the mortality rate fits the pattern of emerging infectious diseases [ 46 ]. Furthermore, the reported cases did not consider asymptomatic cases, mild cases where individuals have not sought medical treatment, and the fact that many countries had limited access to diagnostic tests or have implemented testing policies later than the others. Considering the lack of reviews assessing diagnostic testing (sensitivity, specificity, and predictive values of RT-PCT or immunoglobulin tests), and the preponderance of studies that assessed only symptomatic individuals, considerable imprecision around the calculated mortality rates existed in the early stage of the COVID-19 pandemic.

Few reviews included treatment data. Those reviews described studies considered to be at a very low level of evidence: usually small, retrospective studies with very heterogeneous populations. Seven reviews analyzed laboratory parameters; those reviews could have been useful for clinicians who attend patients suspected of COVID-19 in emergency services worldwide, such as assessing which patients need to be reassessed more frequently.

All systematic reviews scored poorly on the AMSTAR 2 critical appraisal tool for systematic reviews. Most of the original studies included in the reviews were case series and case reports, impacting the quality of evidence. Such evidence has major implications for clinical practice and the use of these reviews in evidence-based practice and policy. Clinicians, patients, and policymakers can only have the highest confidence in systematic review findings if high-quality systematic review methodologies are employed. The urgent need for information during a pandemic does not justify poor quality reporting.

We acknowledge that there are numerous challenges associated with analyzing COVID-19 data during a pandemic [ 47 ]. High-quality evidence syntheses are needed for decision-making, but each type of evidence syntheses is associated with its inherent challenges.

The creation of classic systematic reviews requires considerable time and effort; with massive research output, they quickly become outdated, and preparing updated versions also requires considerable time. A recent study showed that updates of non-Cochrane systematic reviews are published a median of 5 years after the publication of the previous version [ 48 ].

Authors may register a review and then abandon it [ 49 ], but the existence of a public record that is not updated may lead other authors to believe that the review is still ongoing. A quarter of Cochrane review protocols remains unpublished as completed systematic reviews 8 years after protocol publication [ 50 ].

Rapid reviews can be used to summarize the evidence, but they involve methodological sacrifices and simplifications to produce information promptly, with inconsistent methodological approaches [ 51 ]. However, rapid reviews are justified in times of public health emergencies, and even Cochrane has resorted to publishing rapid reviews in response to the COVID-19 crisis [ 52 ]. Rapid reviews were eligible for inclusion in this overview, but only one of the 18 reviews included in this study was labeled as a rapid review.

Ideally, COVID-19 evidence would be continually summarized in a series of high-quality living systematic reviews, types of evidence synthesis defined as “ a systematic review which is continually updated, incorporating relevant new evidence as it becomes available ” [ 53 ]. However, conducting living systematic reviews requires considerable resources, calling into question the sustainability of such evidence synthesis over long periods [ 54 ].

Research reports about COVID-19 will contribute to research waste if they are poorly designed, poorly reported, or simply not necessary. In principle, systematic reviews should help reduce research waste as they usually provide recommendations for further research that is needed or may advise that sufficient evidence exists on a particular topic [ 55 ]. However, systematic reviews can also contribute to growing research waste when they are not needed, or poorly conducted and reported. Our present study clearly shows that most of the systematic reviews that were published early on in the COVID-19 pandemic could be categorized as research waste, as our confidence in their results is critically low.

Our study has some limitations. One is that for AMSTAR 2 assessment we relied on information available in publications; we did not attempt to contact study authors for clarifications or additional data. In three reviews, the methodological quality appraisal was challenging because they were published as letters, or labeled as rapid communications. As a result, various details about their review process were not included, leading to AMSTAR 2 questions being answered as “not reported”, resulting in low confidence scores. Full manuscripts might have provided additional information that could have led to higher confidence in the results. In other words, low scores could reflect incomplete reporting, not necessarily low-quality review methods. To make their review available more rapidly and more concisely, the authors may have omitted methodological details. A general issue during a crisis is that speed and completeness must be balanced. However, maintaining high standards requires proper resourcing and commitment to ensure that the users of systematic reviews can have high confidence in the results.

Furthermore, we used adjusted AMSTAR 2 scoring, as the tool was designed for critical appraisal of reviews of interventions. Some reviews may have received lower scores than actually warranted in spite of these adjustments.

Another limitation of our study may be the inclusion of multiple overlapping reviews, as some included reviews included the same primary studies. According to the Cochrane Handbook, including overlapping reviews may be appropriate when the review’s aim is “ to present and describe the current body of systematic review evidence on a topic ” [ 12 ], which was our aim. To avoid bias with summarizing evidence from overlapping reviews, we presented the forest plots without summary estimates. The forest plots serve to inform readers about the effect sizes for outcomes that were reported in each review.

Several authors from this study have contributed to one of the reviews identified [ 25 ]. To reduce the risk of any bias, two authors who did not co-author the review in question initially assessed its quality and limitations.

Finally, we note that the systematic reviews included in our overview may have had issues that our analysis did not identify because we did not analyze their primary studies to verify the accuracy of the data and information they presented. We give two examples to substantiate this possibility. Lovato et al. wrote a commentary on the review of Sun et al. [ 41 ], in which they criticized the authors’ conclusion that sore throat is rare in COVID-19 patients [ 56 ]. Lovato et al. highlighted that multiple studies included in Sun et al. did not accurately describe participants’ clinical presentations, warning that only three studies clearly reported data on sore throat [ 56 ].

In another example, Leung [ 57 ] warned about the review of Li, L.Q. et al. [ 29 ]: “ it is possible that this statistic was computed using overlapped samples, therefore some patients were double counted ”. Li et al. responded to Leung that it is uncertain whether the data overlapped, as they used data from published articles and did not have access to the original data; they also reported that they requested original data and that they plan to re-do their analyses once they receive them; they also urged readers to treat the data with caution [ 58 ]. This points to the evolving nature of evidence during a crisis.

Our study’s strength is that this overview adds to the current knowledge by providing a comprehensive summary of all the evidence synthesis about COVID-19 available early after the onset of the pandemic. This overview followed strict methodological criteria, including a comprehensive and sensitive search strategy and a standard tool for methodological appraisal of systematic reviews.

In conclusion, in this overview of systematic reviews, we analyzed evidence from the first 18 systematic reviews that were published after the emergence of COVID-19. However, confidence in the results of all the reviews was “critically low”. Thus, systematic reviews that were published early on in the pandemic could be categorized as research waste. Even during public health emergencies, studies and systematic reviews should adhere to established methodological standards to provide patients, clinicians, and decision-makers trustworthy evidence.

Availability of data and materials

All data collected and analyzed within this study are available from the corresponding author on reasonable request.

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Acknowledgments

We thank Catherine Henderson DPhil from Swanscoe Communications for pro bono medical writing and editing support. We acknowledge support from the Covidence Team, specifically Anneliese Arno. We thank the whole International Network of Coronavirus Disease 2019 (InterNetCOVID-19) for their commitment and involvement. Members of the InterNetCOVID-19 are listed in Additional file 6 . We thank Pavel Cerny and Roger Crosthwaite for guiding the team supervisor (IJBN) on human resources management.

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Israel Júnior Borges do Nascimento

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Dónal P. O’Mathúna

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IJBN conceived the research idea and worked as a project coordinator. DPOM, TCVG, HMA, IW, AM, LP, VTC, IZG, TPP, ANA, SF, NLB and MSM were involved in data curation, formal analysis, investigation, methodology, and initial draft writing. All authors revised the manuscript critically for the content. The author(s) read and approved the final manuscript.

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Supplementary Information

Additional file 1: appendix 1..

Search strategies used in the study.

Additional file 2: Appendix 2.

Adjusted scoring of AMSTAR 2 used in this study for systematic reviews of studies that did not analyze interventions.

Additional file 3: Appendix 3.

List of excluded studies, with reasons.

Additional file 4: Appendix 4.

Table of overlapping studies, containing the list of primary studies included, their visual overlap in individual systematic reviews, and the number in how many reviews each primary study was included.

Additional file 5: Appendix 5.

A detailed explanation of AMSTAR scoring for each item in each review.

Additional file 6: Appendix 6.

List of members and affiliates of International Network of Coronavirus Disease 2019 (InterNetCOVID-19).

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Borges do Nascimento, I.J., O’Mathúna, D.P., von Groote, T.C. et al. Coronavirus disease (COVID-19) pandemic: an overview of systematic reviews. BMC Infect Dis 21 , 525 (2021). https://doi.org/10.1186/s12879-021-06214-4

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• Volume 10, Issue 12
• Impact of the COVID-19 pandemic on mental health and well-being of communities: an exploratory qualitative study protocol
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• http://orcid.org/0000-0003-0180-0213 Anam Shahil Feroz 1 , 2 ,
• Naureen Akber Ali 3 ,
• Noshaba Akber Ali 1 ,
• Ridah Feroz 4 ,
• Salima Nazim Meghani 1 ,
• Sarah Saleem 1
• 1 Community Health Sciences , Aga Khan University , Karachi , Pakistan
• 2 Institute of Health Policy, Management and Evaluation , University of Toronto , Toronto , Ontario , Canada
• 3 School of Nursing and Midwifery , Aga Khan University , Karachi , Pakistan
• 4 Aga Khan University Institute for Educational Development , Karachi , Pakistan
• Correspondence to Ms Anam Shahil Feroz; anam.sahyl{at}gmail.com

Introduction The COVID-19 pandemic has certainly resulted in an increased level of anxiety and fear in communities in terms of disease management and infection spread. Due to fear and social stigma linked with COVID-19, many individuals in the community hide their disease and do not access healthcare facilities in a timely manner. In addition, with the widespread use of social media, rumours, myths and inaccurate information about the virus are spreading rapidly, leading to intensified irritability, fearfulness, insomnia, oppositional behaviours and somatic complaints. Considering the relevance of all these factors, we aim to explore the perceptions and attitudes of community members towards COVID-19 and its impact on their daily lives and mental well-being.

Methods and analysis This formative research will employ an exploratory qualitative research design using semistructured interviews and a purposive sampling approach. The data collection methods for this formative research will include indepth interviews with community members. The study will be conducted in the Karimabad Federal B Area and in the Garden (East and West) community settings in Karachi, Pakistan. The community members of these areas have been selected purposively for the interview. Study data will be analysed thematically using NVivo V.12 Plus software.

Ethics and dissemination Ethical approval for this study has been obtained from the Aga Khan University Ethical Review Committee (2020-4825-10599). The results of the study will be disseminated to the scientific community and to the research subjects participating in the study. The findings will help us explore the perceptions and attitudes of different community members towards the COVID-19 pandemic and its impact on their daily lives and mental well-being.

• mental health
• public health

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/ .

https://doi.org/10.1136/bmjopen-2020-041641

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Strengths and limitations of this study

The mental health impact of the COVID-19 pandemic is likely to last much longer than the physical health impact, and this study is positioned well to explore the perceptions and attitudes of community members towards the pandemic and its impact on their daily lives and mental well-being.

This study will guide the development of context-specific innovative mental health programmes to support communities in the future.

One limitation is that to minimise the risk of infection all study respondents will be interviewed online over Zoom and hence the authors will not have the opportunity to build rapport with the respondents or obtain non-verbal cues during interviews.

The COVID-19 pandemic has affected almost 180 countries since it was first detected in Wuhan, China in December 2019. 1 2 The COVID-19 outbreak has been declared a public health emergency of international concern by the WHO. 3 The WHO estimates the global mortality to be about 3.4% 4 ; however, death rates vary between countries and across age groups. 5 In Pakistan, a total of 10 880 cases and 228 deaths due to COVID-19 infection have been reported to date. 6

The worldwide COVID-19 pandemic has not only incurred massive challenges to the global supply chains and healthcare systems but also has a detrimental effect on the overall health of individuals. 7 The pandemic has led to lockdowns and has created destructive impact on the societies at large. Most company employees, including daily wage workers, have been prohibited from going to their workplaces or have been asked to work from home, which has caused job-related insecurities and financial crises in the communities. 8 Educational institutions and training centres have also been closed, which resulted in children losing their routine of going to schools, studying and socialising with their peers. Delay in examinations is likewise a huge stressor for students. 8 Alongside this, parents have been struggling with creating a structured milieu for their children. 9 COVID-19 has hindered the normal routine life of every individual, be it children, teenagers, adults or the elderly. The crisis is engendering burden throughout populations and communities, particularly in developing countries such as Pakistan which face major challenges due to fragile healthcare systems and poor economic structures. 10

The COVID-19 pandemic has certainly resulted in an increased level of anxiety and fear in communities in terms of disease management and infection spread. 8 Further, the highly contagious nature of COVID-19 has also escalated confusion, fear and panic among community residents. Moreover, social distancing is often an unpleasant experience for community members and for patients as it adds to mental suffering, particularly in the local setting where get-togethers with friends and families are a major source of entertainment. 9 Recent studies also showed that individuals who are following social distancing rules experience loneliness, causing a substantial level of distress in the form of anxiety, stress, anger, misperception and post-traumatic stress symptoms. 8 11 Separation from family members, loss of autonomy, insecurity over disease status, inadequate supplies, inadequate information, financial loss, frustration, stigma and boredom are all major stressors that can create drastic impact on an individual’s life. 11 Due to fear and social stigma linked with COVID-19, many individuals in the community hide their disease and do not access healthcare facilities in a timely manner. 12 With the widespread use of social media, 13 rumours, myths and inaccurate information about COVID-19 are also spreading rapidly, not only among adults but are also carried on to children, leading to intensified irritability, fearfulness, insomnia, oppositional behaviours and somatic complaints. 9 The psychological symptoms associated with COVID-19 at the community level are also manifested as anxiety-driven panic buying, resulting in exhaustion of resources from the market. 14 Some level of panic also dwells in the community due to the unavailability of essential protective equipment, particularly masks and sanitisers. 15 Similarly, mental health issues, including depression, anxiety, panic attacks, psychotic symptoms and even suicide, were reported during the early severe acute respiratory syndrome outbreak. 16 17 COVID-19 is likely posing a similar risk throughout the world. 12

The fear of transmitting the disease or a family member falling ill is a probable mental function of human nature, but at some point the psychological fear of the disease generates more anxiety than the disease itself. Therefore, mental health problems are likely to increase among community residents during an epidemic situation. Considering the relevance of all these factors, we aim to explore the perceptions and attitudes towards COVID-19 among community residents and the impact of these perceptions and attitude on their daily lives and mental well-being.

Methods and analysis

Study design.

This study will employ an exploratory qualitative research design using semistructured interviews and a purposive sampling approach. The data collection methods for this formative research will include indepth interviews (IDIs) with community members. The IDIs aim to explore perceptions of community members towards COVID-19 and its impact on their mental well-being.

Study setting and study participants

The study will be conducted in two communities in Karachi City: Karimabad Federal B Area Block 3 Gulberg Town, and Garden East and Garden West. Karimabad is a neighbourhood in the Karachi Central District of Karachi, Pakistan, situated in the south of Gulberg Town bordering Liaquatabad, Gharibabad and Federal B Area. The population of this neighbourhood is predominantly Ismailis. People living here belong mostly to the middle class to the lower middle class. It is also known for its wholesale market of sports goods and stationery. Garden is an upmarket neighbourhood in the Karachi South District of Karachi, Pakistan, subdivided into two neighbourhoods: Garden East and Garden West. It is the residential area around the Karachi Zoological Gardens; hence, it is popularly known as the ‘Garden’ area. The population of Garden used to be primarily Ismailis and Goan Catholics but has seen an increasing number of Memons, Pashtuns and Baloch. These areas have been selected purposively because the few members of these communities are already known to one of the coinvestigators. The coinvestigator will serve as a gatekeeper for providing entrance to the community for the purpose of this study. Adult community members of different ages and both genders will be interviewed from both sites, as mentioned in table 1 . Interview participants will be selected following the eligibility criteria.

• View inline

Study participants for indepth interviews

IDIs with community members

We will conduct IDIs with community members to explore the perceptions and attitudes of community members towards COVID-19 and its effects on their daily lives and mental well-being. IDI participants will be identified via the community WhatsApp group, and will be invited for an interview via a WhatsApp message or email. Consent will be taken over email or WhatsApp before the interview begins, where they will agree that the interview can be audio-recorded and that written notes can be taken. The interviews will be conducted either in Urdu or in English language, and each interview will last around 40–50 min. Study participants will be assured that their information will remain confidential and that no identifying features will be mentioned on the transcript. The major themes will include a general discussion about participants’ knowledge and perceptions about the COVID-19 pandemic, perceptions on safety measures, and perceived challenges in the current situation and its impact on their mental well-being. We anticipate that 24–30 interviews will be conducted, but we will cease interviews once data saturation has been achieved. Data saturation is the point when no new themes emerge from the additional interviews. Data collection will occur concurrently with data analysis to determine data saturation point. The audio recordings will be transcribed by a transcriptionist within 24 hours of the interviews.

An interview guide for IDIs is shown in online supplemental annex 1 .

Supplemental material

Eligibility criteria.

The following are the criteria for inclusion and exclusion of study participants:

Inclusion criteria

Residents of Garden (East and West) and Karimabad Federal B Area of Karachi who have not contracted the disease.

Exclusion criteria

Those who refuse to participate in the study.

Those who have experienced COVID-19 and are undergoing treatment.

Those who are suspected for COVID-19 and have been isolated/quarantined.

Family members of COVID-19-positive cases.

Data collection procedure

A semistructured interview guide has been developed for community members. The initial questions on the guide will help to explore participants’ perceptions and attitudes towards COVID-19. Additional questions on the guide will assess the impact of these perceptions and attitude on the daily lives and mental health and well-being of community residents. All semistructured interviews will be conducted online via Zoom or WhatsApp. Interviews will be scheduled at the participant’s convenient day and time. Interviews are anticipated to begin on 1 December 2020.

Patient and public involvement

No patients were involved.

Data analysis

We will transcribe and translate collected data into English language by listening to the audio recordings in order to conduct a thematic analysis. NVivo V.12 Plus software will be used to import, organise and explore data for analysis. Two independent researchers will read the transcripts at various times to develop familiarity and clarification with the data. We will employ an iterative process which will help us to label data and generate new categories to identify emergent themes. The recorded text will be divided into shortened units and labelled as a ‘code’ without losing the main essence of the research study. Subsequently, codes will be analysed and merged into comparable categories. Lastly, the same categories will be grouped into subthemes and final themes. To ensure inter-rater reliability, two independent investigators will perform the coding, category creation and thematic analyses. Discrepancies between the two investigators will be resolved through consensus meetings to reduce researcher bias.

Ethics and dissemination

Study participants will be asked to provide informed, written consent prior to participation in the study. The informed consent form can be submitted by the participant via WhatsApp or email. Participants who are unable to write their names will be asked to provide a thumbprint to symbolise their consent to participate. Ethical approval for this study has been obtained from the Aga Khan University Ethical Review Committee (2020-4825-10599). The study results will be disseminated to the scientific community and to the research subjects participating in the study. The findings will help us explore the perceptions and attitudes of different community members towards the COVID-19 pandemic and its impact on their daily lives and mental well-being.

The findings of this study will help us to explore the perceptions and attitudes towards the COVID-19 pandemic and its impact on the daily lives and mental well-being of individuals in the community. Besides, an indepth understanding of the needs of the community will be identified, which will help us develop context-specific innovative mental health programmes to support communities in the future. The study will provide insights into how communities are managing their lives under such a difficult situation.

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• Harding LE , et al
• Nargis Asad
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• Brooks SK ,
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Supplementary materials

Supplementary data.

This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

• Data supplement 1

ASF and NAA are joint first authors.

Contributors ASF and NAA conceived the study. ASF, NAA, RF, NA, SNM and SS contributed to the development of the study design and final protocols for sample selection and interviews. ASF and NAA contributed to writing the manuscript. All authors reviewed and approved the final version of the paper.

Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests None declared.

Patient consent for publication Not required.

Provenance and peer review Not commissioned; externally peer reviewed

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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The Impact of COVID-19 on the Careers of Women in Academic Sciences, Engineering, and Medicine (2021)

Chapter: 8 major findings and research questions, 8 major findings and research questions, introduction.

The COVID-19 pandemic, which began in late 2019, created unprecedented global disruption and infused a significant level of uncertainty into the lives of individuals, both personally and professionally, around the world throughout 2020. The significant effect on vulnerable populations, such as essential workers and the elderly, is well documented, as is the devastating effect the COVID-19 pandemic had on the economy, particularly brick-and-mortar retail and hospitality and food services. Concurrently, the deaths of unarmed Black people at the hands of law enforcement officers created a heightened awareness of the persistence of structural injustices in U.S. society.

Against the backdrop of this public health crisis, economic upheaval, and amplified social consciousness, an ad hoc committee was appointed to review the potential effects of the COVID-19 pandemic on women in academic science, technology, engineering, mathematics, and medicine (STEMM) during 2020. The committee’s work built on the National Academies of Sciences, Engineering, and Medicine report Promising Practices for Addressing the Underrepresentation of Women in Science, Engineering, and Medicine: Opening Doors (the Promising Practices report), which presents evidence-based recommendations to address the well-established structural barriers that impede the advancement of women in STEMM. However, the committee recognized that none of the actions identified in the Promising Practices report were conceived within the context of a pandemic, an economic downturn, or the emergence of national protests against structural racism. The representation and vitality of academic women in STEMM had already warranted national attention prior to these events, and the COVID-19

pandemic appeared to represent an additional risk to the fragile progress that women had made in some STEMM disciplines. Furthermore, the future will almost certainly hold additional, unforeseen disruptions, which underscores the importance of the committee’s work.

In times of stress, there is a risk that the divide will deepen between those who already have advantages and those who do not. In academia, senior and tenured academics are more likely to have an established reputation, a stable salary commitment, and power within the academic system. They are more likely, before the COVID-19 pandemic began, to have established professional networks, generated data that can be used to write papers, and achieved financial and job security. While those who have these advantages may benefit from a level of stability relative to others during stressful times, those who were previously systemically disadvantaged are more likely to experience additional strain and instability.

As this report has documented, during 2020 the COVID-19 pandemic had overall negative effects on women in academic STEMM in areas such productivity, boundary setting and boundary control, networking and community building, burnout rates, and mental well-being. The excessive expectations of caregiving that often fall on the shoulders of women cut across career timeline and rank (e.g., graduate student, postdoctoral scholar, non-tenure-track and other contingent faculty, tenure-track faculty), institution type, and scientific discipline. Although there have been opportunities for innovation and some potential shifts in expectations, increased caregiving demands associated with the COVID-19 pandemic in 2020, such as remote working, school closures, and childcare and eldercare, had disproportionately negative outcomes for women.

The effects of the COVID-19 pandemic on women in STEMM during 2020 are understood better through an intentionally intersectional lens. Productivity, career, boundary setting, mental well-being, and health are all influenced by the ways in which social identities are defined and cultivated within social and power structures. Race and ethnicity, sexual orientation, gender identity, academic career stage, appointment type, institution type, age, and disability status, among many other factors, can amplify or diminish the effects of the COVID-19 pandemic for a given person. For example, non-cisgender women may be forced to return to home environments where their gender identity is not accepted, increasing their stress and isolation, and decreasing their well-being. Women of Color had a higher likelihood of facing a COVID-19–related death in their family compared with their white, non-Hispanic colleagues. The full extent of the effects of the COVID-19 pandemic for women of various social identities was not fully understood at the end of 2020.

Considering the relative paucity of women in many STEMM fields prior to the COVID-19 pandemic, women are more likely to experience academic isolation, including limited access to mentors, sponsors, and role models that share gender, racial, or ethnic identities. Combining this reality with the physical isolation stipulated by public health responses to the COVID-19 pandemic,

women in STEMM were subject to increasing isolation within their fields, networks, and communities. Explicit attention to the early indicators of how the COVID-19 pandemic affected women in academic STEMM careers during 2020, as well as attention to crisis responses throughout history, may provide opportunities to mitigate some of the long-term effects and potentially develop a more resilient and equitable academic STEMM system.

MAJOR FINDINGS

Given the ongoing nature of the COVID-19 pandemic, it was not possible to fully understand the entirety of the short- or long-term implications of this global disruption on the careers of women in academic STEMM. Having gathered preliminary data and evidence available in 2020, the committee found that significant changes to women’s work-life boundaries and divisions of labor, careers, productivity, advancement, mentoring and networking relationships, and mental health and well-being have been observed. The following findings represent those aspects that the committee agreed have been substantiated by the preliminary data, evidence, and information gathered by the end of 2020. They are presented either as Established Research and Experiences from Previous Events or Impacts of the COVID-19 Pandemic during 2020 that parallel the topics as presented in the report.

Established Research and Experiences from Previous Events

___________________

1 This finding is primarily based on research on cisgender women and men.

Impacts of the COVID-19 Pandemic during 2020

Research questions.

While this report compiled much of the research, data, and evidence available in 2020 on the effects of the COVID-19 pandemic, future research is still needed to understand all the potential effects, especially any long-term implications. The research questions represent areas the committee identified for future research, rather than specific recommendations. They are presented in six categories that parallel the chapters of the report: Cross-Cutting Themes; Academic Productivity and Institutional Responses; Work-Life Boundaries and Gendered Divisions of Labor; Collaboration, Networking, and Professional Societies; Academic Leadership and Decision-Making; and Mental Health and Well-being. The committee hopes the report will be used as a basis for continued understanding of the impact of the COVID-19 pandemic in its entirety and as a reference for mitigating impacts of future disruptions that affect women in academic STEMM. The committee also hopes that these research questions may enable academic STEMM to emerge from the pandemic era a stronger, more equitable place for women. Therefore, the committee identifies two types of research questions in each category; listed first are those questions aimed at understanding the impacts of the disruptions from the COVID-19 pandemic, followed by those questions exploring the opportunities to help support the full participation of women in the future.

Cross-Cutting Themes

• What are the short- and long-term effects of the COVID-19 pandemic on the career trajectories, job stability, and leadership roles of women, particularly of Black women and other Women of Color? How do these effects vary across institutional characteristics, 2 discipline, and career stage?

2 Institutional characteristics include different institutional types (e.g., research university, liberal arts college, community college), locales (e.g., urban, rural), missions (e.g., Historically Black Colleges and Universities, Hispanic-Serving Institutions, Asian American/Native American/Pacific Islander-Serving Institutions, Tribal Colleges and Universities), and levels of resources.

• How did the confluence of structural racism, economic hardships, and environmental disruptions affect Women of Color during the COVID-19 pandemic? Specifically, how did the murder of George Floyd, Breonna Taylor, and other Black citizens impact Black women academics’ safety, ability to be productive, and mental health?
• How has the inclusion of women in leadership and other roles in the academy influenced the ability of institutions to respond to the confluence of major social crises during the COVID-19 pandemic?
• How can institutions build on the involvement women had across STEMM disciplines during the COVID-19 pandemic to increase the participation of women in STEMM and/or elevate and support women in their current STEMM-related positions?
• How can institutions adapt, leverage, and learn from approaches developed during 2020 to attend to challenges experienced by Women of Color in STEMM in the future?

Academic Productivity and Institutional Responses

• How did the institutional responses (e.g., policies, practices) that were outlined in the Major Findings impact women faculty across institutional characteristics and disciplines?
• What are the short- and long-term effects of faculty evaluation practices and extension policies implemented during the COVID-19 pandemic on the productivity and career trajectories of members of the academic STEMM workforce by gender?
• What adaptations did women use during the transition to online and hybrid teaching modes? How did these techniques and adaptations vary as a function of career stage and institutional characteristics?
• What are examples of institutional changes implemented in response to the COVID-19 pandemic that have the potential to reduce systemic barriers to participation and advancement that have historically been faced by academic women in STEMM, specifically Women of Color and other marginalized women in STEMM? How might positive institutional responses be leveraged to create a more resilient and responsive higher education ecosystem?
• How can or should funding arrangements be altered (e.g., changes in funding for research and/or mentorship programs) to support new ways of interaction for women in STEMM during times of disruption, such as the COVID-19 pandemic?

Work-Life Boundaries and Gendered Divisions of Labor

• How do different social identities (e.g., racial; socioeconomic status; culturally, ethnically, sexually, or gender diverse; immigration status; parents of young children and other caregivers; women without partners) influence the management of work-nonwork boundaries? How did this change during the COVID-19 pandemic?
• How have COVID-19 pandemic-related disruptions affected progress toward reducing the gender gap in academic STEMM labor-force participation? How does this differ for Women of Color or women with caregiving responsibilities?
• How can institutions account for the unique challenges of women faculty with parenthood and caregiving responsibilities when developing effective and equitable policies, practices, or programs?
• How might insights gained about work-life boundaries during the COVID-19 pandemic inform how institutions develop and implement supportive resources (e.g., reductions in workload, on-site childcare, flexible working options)?

Collaboration, Networking, and Professional Societies

• What were the short- and long-term effects of the COVID-19 pandemic-prompted switch from in-person conferences to virtual conferences on conference culture and climate, especially for women in STEMM?
• How will the increase in virtual conferences specifically affect women’s advancement and career trajectories? How will it affect women’s collaborations?
• How has the shift away from attending conferences and in-person networking changed longer-term mentoring and sponsoring relationships, particularly in terms of gender dynamics?
• How can institutions maximize the benefits of digitization and the increased use of technology observed during the COVID-19 pandemic to continue supporting women, especially marginalized women, by increasing accessibility, collaborations, mentorship, and learning?
• How can organizations that support, host, or facilitate online and virtual conferences and networking events (1) ensure open and fair access to participants who face different funding and time constraints; (2) foster virtual connections among peers, mentors, and sponsors; and (3) maintain an inclusive environment to scientists of all backgrounds?
• What policies, practices, or programs can be developed to help women in STEMM maintain a sense of support, structure, and stability during and after periods of disruption?

Academic Leadership and Decision-Making

• What specific interventions did colleges and universities initiate or prioritize to ensure that women were included in decision-making processes during responses to the COVID-19 pandemic?
• How effective were colleges and universities that prioritized equity-minded leadership, shared leadership, and crisis leadership styles at mitigating emerging and potential negative effects of the COVID-19 pandemic on women in their communities?
• What specific aspects of different leadership models translated to more effective strategies to advance women in STEMM, particularly during the COVID-19 pandemic?
• How can examples of intentional inclusion of women in decision-making processes during the COVID-19 pandemic be leveraged to develop the engagement of women as leaders at all levels of academic institutions?
• What are potential “top-down” structural changes in academia that can be implemented to mitigate the adverse effects of the COVID-19 pandemic or other disruptions?
• How can academic leadership, at all levels, more effectively support the mental health needs of women in STEMM?

Mental Health and Well-being

• What is the impact of the COVID-19 pandemic and institutional responses on the mental health and well-being of members of the academic STEMM workforce as a function of gender, race, and career stage?
• How are tools and diagnostic tests to measure aspects of wellbeing, including burnout and insomnia, used in academic settings? How does this change during times of increased stress, such as the COVID-19 pandemic?
• How might insights gained about mental health during the COVID-19 pandemic be used to inform preparedness for future disruptions?
• How can programs that focus on changes in biomarkers of stress and mood dysregulation, such as levels of sleep, activity, and texting patterns, be developed and implemented to better engage women in addressing their mental health?
• What are effective interventions to address the health of women academics in STEMM that specifically account for the effects of stress on women? What are effective interventions to mitigate the excessive levels of stress for Women of Color?

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The spring of 2020 marked a change in how almost everyone conducted their personal and professional lives, both within science, technology, engineering, mathematics, and medicine (STEMM) and beyond. The COVID-19 pandemic disrupted global scientific conferences and individual laboratories and required people to find space in their homes from which to work. It blurred the boundaries between work and non-work, infusing ambiguity into everyday activities. While adaptations that allowed people to connect became more common, the evidence available at the end of 2020 suggests that the disruptions caused by the COVID-19 pandemic endangered the engagement, experience, and retention of women in academic STEMM, and may roll back some of the achievement gains made by women in the academy to date.

The Impact of COVID-19 on the Careers of Women in Academic Sciences, Engineering, and Medicine identifies, names, and documents how the COVID-19 pandemic disrupted the careers of women in academic STEMM during the initial 9-month period since March 2020 and considers how these disruptions - both positive and negative - might shape future progress for women. This publication builds on the 2020 report Promising Practices for Addressing the Underrepresentation of Women in Science, Engineering, and Medicine to develop a comprehensive understanding of the nuanced ways these disruptions have manifested. The Impact of COVID-19 on the Careers of Women in Academic Sciences, Engineering, and Medicine will inform the academic community as it emerges from the pandemic to mitigate any long-term negative consequences for the continued advancement of women in the academic STEMM workforce and build on the adaptations and opportunities that have emerged.

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Open Access

Peer-reviewed

Research Article

Impacts of COVID-19 on clinical research in the UK: A multi-method qualitative case study

Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Validation, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliations School of Population Health and Environmental Sciences, King’s College London, United Kingdom, National Institute for Health Research Biomedical Research Centre at Guy’s and St. Thomas’ NHS Foundation Trust and King’s College London, United Kingdom

Roles Data curation, Formal analysis, Investigation, Methodology, Project administration, Resources, Validation, Writing – original draft, Writing – review & editing

Roles Conceptualization, Funding acquisition, Writing – review & editing

• David Wyatt, 
• Rachel Faulkner-Gurstein, 
• Hannah Cowan, 
• Charles D. A. Wolfe

• Published: August 31, 2021
• https://doi.org/10.1371/journal.pone.0256871
• Peer Review
• Reader Comments

Clinical research has been central to the global response to COVID-19, and the United Kingdom (UK), with its research system embedded within the National Health Service (NHS), has been singled out globally for the scale and speed of its COVID-19 research response. This paper explores the impacts of COVID-19 on clinical research in an NHS Trust and how the embedded research system was adapted and repurposed to support the COVID-19 response.

Methods and findings

Using a multi-method qualitative case study of a research-intensive NHS Trust in London UK, we collected data through a questionnaire (n = 170) and semi-structured interviews (n = 24) with research staff working in four areas: research governance; research leadership; research delivery; and patient and public involvement. We also observed key NHS Trust research prioritisation meetings (40 hours) and PPI activity (4.5 hours) and analysed documents produced by the Trust and national organisation relating to COVID-19 research. Data were analysed for a descriptive account of the Trust’s COVID-19 research response and research staff’s experiences. Data were then analysed thematically. Our analysis identifies three core themes: centralisation; pace of work; and new (temporary) work practices. By centralising research prioritisation at both national and Trust levels, halting non-COVID-19 research and redeploying research staff, an increased pace in the setup and delivery of COVID-19-related research was possible. National and Trust-level responses also led to widescale changes in working practices by adapting protocols and developing local processes to maintain and deliver research. These were effective practical solutions borne out of necessity and point to how the research system was able to adapt to the requirements of the pandemic.

The Trust and national COVID-19 response entailed a rapid large-scale reorganisation of research staff, research infrastructures and research priorities. The Trust’s local processes that enabled them to enact national policy prioritising COVID-19 research worked well, especially in managing finite resources, and also demonstrate the importance and adaptability of the research workforce. Such findings are useful as we consider how to adapt our healthcare delivery and research practices both at the national and global level for the future. However, as the pandemic continues, research leaders and policymakers must also take into account the short and long term impact of COVID-19 prioritisation on non-COVID-19 health research and the toll of the emergency response on research staff.

Citation: Wyatt D, Faulkner-Gurstein R, Cowan H, Wolfe CDA (2021) Impacts of COVID-19 on clinical research in the UK: A multi-method qualitative case study. PLoS ONE 16(8): e0256871. https://doi.org/10.1371/journal.pone.0256871

Editor: Quinn Grundy, University of Toronto, CANADA

Received: April 14, 2021; Accepted: August 17, 2021; Published: August 31, 2021

Copyright: © 2021 Wyatt et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: Data from this study take the form of interview transcripts, Hospital Trust and national documents, and observations of closed meetings. These data cannot be shared publicly, but extracts from interviews are presented within the body of the paper that make up the "minimal dataset."

Funding: DW, RFG, HC and CADW are all funded by the National Institute for Health Research ( http://nihr.ac.uk/ ) Biomedical Research Centre at Guy’s and St Thomas’ NHS Foundation Trust and King’s College London (Grant number IS‐BRC‐1215‐20006). The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Competing interests: No

Introduction

Clinical research is a core part of the global response to COVID-19. The United Kingdom (UK), with its research system embedded within the National Health Service (NHS), has been singled out by commentators globally for the scale and speed of its COVID-19 research response, particularly in terms of trial recruitment [ 1 – 3 ]. Reporting from within the UK context, Darzi et al. suggest that participating in clinical trials should be part of the clinical pathway for all COVID-19 patients [ 4 ]. To date, 95 nationally prioritised COVID-19 research projects, labelled Urgent Public Health studies, have commenced [ 5 ]. These and a large number of other COVID-19 studies have rapidly been set up and rolled out across UK hospitals. Supporting and facilitating such research has been made possible by the widespread reorganisation of the NHS’ existing embedded research infrastructure. This reorganisation was initiated by the UK’s Department Health and Social Care (DHSC), which on 16 th March 2020 stated that all National Institute for Health Research (NIHR) funded staff should “prioritise nationally-sponsored COVID-19 research activity” [ 6 ]. They later clarified, stating “the NIHR Clinical Research Network is pausing the site set up of any new or ongoing studies at NHS and social care sites that are not nationally prioritised COVID-19 studies [ 6 ].” Such decisions were said to “enable our research workforce to focus on delivering the nationally prioritised COVID-19 studies or enable redeployment to frontline care where necessary [ 6 ].” To date, reports have focused on the outputs of this research, such as the outcomes of vaccine studies or results of treatment trials, and on frontline clinical staffing, healthcare provision and resource strains faced by hospitals and health care systems at national and global levels [ 7 – 12 ]. As yet, there has been no analysis of the organisation of the research response and the broader impact of the reorganisation of hospitals and research facilities that has allowed clinical research and emergency care work to take place during the pandemic.

In this paper we provide a detailed exploration of how the embedded research infrastructure in one NHS Trust in South London. Throughout this paper, we e use the pseudonym South London Acute Trust (SLAT) to avoid direct identification. This Trust was repurposed to support the completion of COVID-19 research and delivery of frontline care. SLAT is one of the UK’s most research-active Trusts, annually recruiting over 19,000 patients to more than 550 studies. Between February and December 2020, SLAT opened over 80 COVID-19 studies, with more than 18 of these classed as Urgent Public Health studies, recruiting over 7,000 participants. Within this context, we ask: what have been the impacts of COVID-19 on SLAT’s clinical research system, and how has the embedded research system been adapted and repurposed to support the COVID-19 response?

Prior to the pandemic, the process of setting up and managing a clinical research study within a UK NHS Trust involved multiple steps and several actors. Decisions on whether or not to open specific studies rested primarily with the relevant clinical directorate who would vet the study for its appropriateness, scientific merit and feasibility. Other processes were centralised by the Trust’s Research and Development (R&D) governance office, like the sponsorship review (that is, deciding whether the Trust will take responsibility for the study and study compliance) or assisting researchers to gain approvals from national regulatory bodies like the Medicines and Healthcare products Regulatory Agency (MHRA) and the Health Research Authority (HRA). With approvals in place, R&D would then assess whether sufficient resources were available to support the study (the capacity and capability review). Completing this process was often both onerous and time consuming. As a result of the COVID-19 pandemic, substantial parts of this process were reconfigured, as we detail below.

This is a case study of how the embedded research infrastructure at one NHS Trust was repurposed to support the delivery of frontline care and COVID-19 research. The case study method allowed us to track how the research system was adapting in real time, and enabled an in-depth look at the processes and mechanisms that have underpinned operational changes [ 13 ]. As an instrumental case study, one that focuses on socially, historically and politically situated issues, we use a single site to examine issues that are also faced by other hospital Trusts [ 14 ]. We employed an online questionnaire of research-involved staff, document analysis of emails and official national and Trust documents, observations of planning meetings and semi-structured interviews. Data were collected from individuals working in four levels of the research infrastructure: (1) central research oversight and governance (including R&D leads and research governance staff); (2) principal investigators (PIs); (3) the research delivery workforce (including research nurses, clinical research practitioners, data analysts and research managers); and (4) Patient and Public Involvement (PPI) managers and PPI representatives. Triangulating these four data sources and four levels allowed us to consider the representativeness of our data across the case. Redeployment figures and wider workforce information were provided through a request to SLAT’s research management office.

Sampling and data collection

Data were collected by DW, RFG and HC over a period of six months, from May to October 2020. In the first stage of research, an online questionnaire was disseminated to all research-involved staff at SLAT (approx. 700) on 18 th May 2020 via pre-existing mailing lists. The questionnaire closed on 10 th June 2020 with 170 responses, yielding a response rate of approximately 24%. Whilst 24% would be an inadequate response rate for statistical analysis [ 15 ], it was not intended as a validated survey, but rather a method to gain a broad understanding of staff’s experiences of the COVID-19 research response, with most questions open-ended. We received completed questionnaires from nearly a quarter of research staff during the pandemic. The questionnaire also enabled us to identify and recruit a maximum variation sample of staff involved in the research response across the four groups to interview. Interviews allowed us to explore in more depth some of the recurring themes first identified in the questionnaire.

Interview participants were also recruited using purposive and snowball sampling with an aim to maximise the representation of a variety of experiences across the case [ 16 ]. Key staff within SLAT were identified based on searching the Trust’s website, reviewing staff lists and by speaking to senior personnel for guidance. Interviews were conducted digitally on Microsoft Teams and were recorded and transcribed verbatim. Interviews focused on participants’ work prior to the pandemic, how this work has changed as a result of COVID-19, and the short and long term impacts of COVID-19 on health research more broadly.

Additionally, we obtained permission to observe the regular research prioritisation meetings convened by the Trust’s Director of R&D. These meetings took place over Microsoft Teams once or twice a week and were attended by an average of 10 senior clinical, research and research delivery leaders per session. We attended the meetings as non-participant observers, taking notes and recording proceedings. Recordings were transcribed verbatim. We also analysed all documents that were produced or circulated in connection to the prioritisation meetings. These included email discussions about specific projects, national directives, Trust protocols as well as the applications submitted by investigators to the prioritisation committee.

Lastly, we attended the handful of PPI meetings that were held by the few active PPI groups during this period. We participated in discussions about specific research projects and heard participants’ experiences of PPI during the pandemic. PPI is a core part of the pre-COVID-19 research and research design process [ 17 ]. It was therefore important that changes to PPI were considered within our study. We were also able to present our research and get feedback from groups about our aims. PPI meetings were not recorded, but detailed notes were taken during each session.

Conducting qualitative research during the COVID-19 pandemic has required us to adapt data collection methods to accommodate restrictions on face-to-face meetings and access to the hospital. Studies note that while video conferencing has many benefits, issues such as the familiarity of participants with online platforms and access to technology and high-speed internet can be barriers to the successful use of these technologies in interviewing [ 18 , 19 ]. We experienced only a handful of technical problems in our interviews. In all but two instances, interviews were conducted with cameras on so that we could observe non-verbal communication [ 20 ].

Our data were managed and analysed through NVivo 12 using a two stage process [ 21 ]. In the first stage, we analysed the data for a descriptive and narrative account, paying attention to the contours of the emerging response to COVID-19, including national and Trust decision-making and action [ 22 ]. In the second stage we used thematic analysis to develop an analytic account based on emerging themes [ 21 , 23 ]. Data were coded for key themes independently by DW, RFG and HC iteratively throughout the data collection process. Codes and core themes were then discussed and verified across the researchers. As part of our analysis process, we also presented initial findings to research staff at SLAT and at another NHS Trust. These methods of challenging our analysis both internally and externally were crucial for ensuring we reflected on our own influences on the data and the data’s utility beyond our specific case [ 24 ].

Ethics approval for the study was granted by North East—Newcastle & North Tyneside 2 REC (reference: 20/NE/0138).

We completed 24 interviews, lasting from 24 to 105 minutes (mean average of 52 minutes), observed approximately 40 hours of research prioritisation meetings and 4.5 hours of PPI meetings, and received 170 responses to the questionnaire. In the results that follow our interview participants are divided into four groups. We identify participants using a letter to denote group and number for interview within this group:—G-n (Governance/R&D staff), R-n (Research leaders/PIs), D-n (Research delivery staff), P-n (PPI managers). 3 participants sit in more than one of these groups due to their multiple roles within the Trust. These participants were interviewed using questions from interview guides for all relevant groups. Questionnaire participants are identified as Q-n, followed by a brief description of their role. See Tables 1 and 2 for a breakdown of participants.

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Centralisation: Prioritising COVID-19 research and redeploying research staff

Centralisation within the research apparatus occurred across two levels.

National decision-making.

At the outset of the pandemic, DHSC took steps to assert central control over national research priorities in order to coordinate the national response to COVID-19. This included the shut down or partial shutdown of the normal functioning of the research system. A document circulated throughout the NHS on the 13 th March 2020, which included information from 25 separate Trusts, announced that elements of the UK’s national R&D infrastructure, including the UK Clinical Research Facilities (CRF) and NIHR Clinical Research Network (NIHR CRN) Coordinating Centre were “joining up working to ensure consistency of approach” and that “currently UK NIHR/RC and EU research funding bodies are in the process of selecting research that will be prioritised for approval and delivery across the NHS during the pandemic.” On 16 th March 2020 a directive from the DHSC and the Chief Medical Officer (CMO) ordered the suspension of all non-COVID-19-related research and the reorientation of research capacity towards the effort to develop COVID-19 treatments and vaccines [ 6 ]. Only those studies funded by the NIHR and where “discontinuing them will have significant detrimental effects on the ongoing care of individual participants involved in those studies” were allowed to continue [ 6 ]—in short, those studies where research was the standard of care, for example, with experimental cancer treatments. Decisions on which studies met this threshold were decided at the Trust level. Table 3 documents the scale of the pause in the normal research pipeline at SLAT. Participant G-2 saw this DHSC and CMO directive as an effective way to focus research resources:

I think the really helpful bit was the sort of diktat from Chris Whitty and Louise Wood at DH [Department of Health and Social Care] to say, “Stop everything that’s not COVID.” […] So, to actually have something centrally that said, “No, you’re not actually allowed to do that because we’ve got to focus on the COVID stuff,” was very helpful because people just stopped asking–which was great. And we were freed up to change processes as we needed to.

https://doi.org/10.1371/journal.pone.0256871.t003

Following this directive, a new system of badging certain studies as of Urgent Public Health (UPH) was established, run by DHSC and the CMO. All clinical studies including COVID-19 treatment and vaccine trials that hoped to recruit patients within NHS sites were required to apply for UPH status. An Urgent Public Health Group was convened, chaired by Nick Lemoine, the medical director of the NIHR CRN. The group was responsible for deciding which protocols to label UPH, based on evaluations of scientific merit, feasibility and greatest potential patient benefit [ 25 , 26 ]. Of the 1600 research protocols received by the CMO from March 2020 to February 2021, only 83 were considered national priorities [ 5 , 27 ]. Once a study had received UPH badging, hospital sites like SLAT were required to open them, if resources were available.

This centrally-organised prioritisation of COVID-19-related research removed the authority of individual Trusts and directorates to shape their own research portfolios. This was an unprecedented move by the DHSC, but allowed resources to be concentrated on studies deemed to have the greatest potential impact.

Trust-level decision-making.

In order to enact the DHSC mandate to prioritise COVID-19 research, SLAT created a Trust-level prioritisation process. Twice-weekly prioritisation meetings commenced early April 2020 and were attended by research governance managers, research delivery managers and senior clinicians as well as representatives from the local Clinical Research Network and partner hospitals within the network. The aim of the prioritisation meetings was to protect resources and ensure capacity to undertake UPH-badged research. However, it also ensured effective, timely communication with PIs, helped identify local PIs for new COVID-19 studies led elsewhere, and managed the pause and restart of all non-COVID research. A proforma was introduced to facilitate and standardise prioritisation decision-making. Investigators were asked to provide information summarising their projects, resource requirements and whether they had received UPH badging. Proformas were reviewed during these meetings. By the end of February 2021, this group had reviewed 170 research projects using these proformas across 68 meetings, approving over 80 studies for local setup.

During the first wave of the pandemic, prioritisation group meetings focused mainly on how to open UPH-badged studies, as all other new research had been halted. One important exception was COVID-19 studies that require little or no NHS resource and took place within a single NHS site. These studies were also discussed in these prioritisation group meetings, often with a focus placed on clinical and academic merit. Most of the studies that fitted these criteria and were approved by the prioritisation group involved university researchers analysing patient data collected and pooled in the COVID patient ‘data lake’. This enabled the Trust to maintain research activity in areas not explicitly identified as urgent public health. The research reported in this article was approved through this process.

The joined up approach between national and local decision-making however did cause confusion and frustration. The process of determining whether or not a study would be badged UPH and thus allowed to proceed was initially opaque to Trust researchers and R&D, and the national UPH review process often took weeks from application submission to outcome. Furthermore, the decision to grant a study UPH was and remains out of the hands of the sites that are tasked with delivering this research, even when internally questions were raised about the appropriateness, feasibility or scientific merit of the study. Some researchers designing studies to address key issues in relation to COVID-19 struggled to negotiate the system:

In terms of national COVID studies, we tried to get a number of studies up and going, focusing on older patients. And ran into quite a lot of obstacles and barriers. [..P]eople weren’t certain whether this was research or whether it was quality improvement, audit-type, survey-type work. And that was pretty frustrating, not being able to get clear answers on that from the senior team within R&D. And access to data was very difficult. So, despite lots of conversations about why we really needed to be focusing on older patients, the majority of people with COVID, the biggest impact being in care homes, it was quite frustrating getting hold of people who could actually sign off on studies that we would have like to have done (R-7).

At the Trust level, the prioritisation of research was also important because of the reduction in available research delivery staff. As Table 4 documents, the clinical research delivery workforce, which totalled 165 on 14 th April 2020, was reduced by 79% or 131 staff members during the peak of the first wave due to redeployment to frontline care. A further 52 non-clinical research staff were redeployed to support other Trust activity. With such a reduction of staff, the ability to maintain even those studies which had not been halted was not certain and indeed many studies required changes and protocol deviations as a result. A key point of discussion in all prioritisation meetings was the resourcing requirements of proposed studies and how these requirements might be managed alongside existing commitments. In tandem with these discussions, work was done by the research delivery manager to create a central register of research delivery staff within the Trust. The push to centralise oversite of research delivery staff was initially driven by the requirement to rapidly redeploy staff including nurses and clinical trials practitioners to support the Trust’s emergency response but it was also crucial to the prioritisation group’s understanding of the availability of research resources. Prior to the pandemic, there was no central list of all research delivery staff at the Trust, as D-2 discusses:

A benefit was actually establishing who all the staff are. The systems we have in R&D which relate to where staff sit within the Trust system depends on where they’re funded from. And because research teams have lots of mixed types of funding, some of the staff are visible to me through the systems and some aren’t. So, the only way for me to know who all the staff were, was to manually myself, physically ask. There was no system anywhere that listed who the research staff are.

https://doi.org/10.1371/journal.pone.0256871.t004

In addition to being redeployed to the clinical frontline, research staff were also pulled from across the Trust’s many directorates to form a new dedicated COVID-19 research delivery team. This team became responsible for the rapid set up and roll out of COVID studies of national and international importance, like the Oxford AstraZeneca vaccine trial, among others. Centralising oversight and management of the previously dispersed research delivery workforce enabled SLAT’s research system to react quickly and flexibly to the rapidly evolving clinical demands and research requirements of the pandemic.

While research activity was centrally coordinated within SLAT, R&D were initially left out of Trust emergency planning. An organogram produced by the Trust to represent its emergency response plan did not include R&D or any element of the research system, and a briefing document prepared by SLAT R&D for the Trust’s Gold Tactical Command Unit dated 14 th April 2020 noted this absence, and that there was also no “obvious place in the structure for R&D to naturally sit.” Participant G-3 reflected on what was perceived initially as a failure to consider the role of research:

I think […] the Trust essentially, corporately, hadn’t involved the R&D department in what they were thinking. […] We didn’t have a tactical subgroup where everybody else, every other area in the Trust had a tactical subgroup. […] There was nothing in place. You know, we’ve all voiced this, certainly in meetings at the senior management level–is that, and the words used were, “R&D has been forgotten.” We were forgotten. So, what the Trust had set up and which is, I think, probably a policy or a set of actions that they have for crisis management […] was very militarily organised. […] And we didn’t slot in, nor were we invited on to any of those tactical groups. And didn’t have representation on gold or silver command either. So we were left out of that whole process. […] We had to make real efforts to reach out and offer up. We felt that obligation and we did that.

By late April 2020, R&D were fully integrated into the Trust’s Gold Tactical Command Unit. By this time, however, the prioritisation process had been implemented and oversight of research delivery staff had been centralised, facilitating redeployment to frontline care and COVID-19 research. While the research system contributed staff and other resources to the Trust’s emergency response, it did so at its own initiation.

Pace of work: Shifting gears for the COVID-19 response

One of the most striking aspects of the research infrastructure’s response to the pandemic was the sheer pace of activity and change. The sociological literature on pace suggests that demands for faster productivity are common, and indeed this demand can be seen in the health services literature which often criticises clinical research for not moving fast enough [ 28 – 31 ]. However, the sociological literature also notes the importance of considering where things slow down or even halt [ 28 , 32 ]. In this section we document how pace appeared in participants’ accounts, acknowledging both areas where there were rapid increases in the speed of research work as well as how research work slowed down in other areas.

Increasing pace: Redeployment, research set up and research completion.

Particularly within the first wave, it was the “reserve army” (D-3) of the research delivery workforce who were required to act at speed. As per Table 4 , staff were quickly released from research duties and redeployed to the frontlines to help deliver care. In addition, all NIHR funded staff with clinical training who were not completing COVID-19 research were asked to prioritise frontline care if their employer asked [ 6 ]. Within two weeks, more research delivery staff were redeployed to COVID-19 research teams. Staff were called up one day and told to “come in on the next day” (D-8), and managers were told “they’re going tomorrow. This is their last day with you” (D-4).

As pace of redeployment accelerated, so too did the speed of research. The pace with which researchers demanded studies be delivered and set up was “ten times quicker than normal […] as if someone’s taken a time warp machine to it” (R-2). Those already working in the research infrastructure were aware that research was vital to the pandemic response and, as one participant (D-1) explained:

we needed to start the research while we’re right in the middle of the surge in numbers. And so […] you have studies that come, they need to be set up tomorrow, recruit the first patient by the end of the week.

Such shifts in normal timeframes for work were facilitated in part through centralisation, as noted above. “The real step change,” research manager G-4 suggested, “was having a Prioritisation Group and having [the] team agree a fast-track way of doing things.” Alongside streamlined approval and set-up processes, wider research infrastructures and research practices were adapting at great speed:

I was amazed that, for example, by the end of March, there were–I counted them– 13 granting agencies that, some way or another, had calls on urgent COVID-19 research (R-4).

As a result of these rapid research projects, new knowledge was being produced at an unprecedented rate, as one participant succinctly put it, “science doesn’t usually change that quickly” (D-9). This speed was met with enthusiasm by PIs and research delivery staff alike, but also caused some nervousness. Some were concerned, for example, that PPI had “dropped off the radar” (G-3), whilst others were wary of publication prior to peer review:

the […] thing which is a challenge is that we’re pre-printing research, we’re putting pre-prints out when we’re submitting to journals, because–and we’re rushing to get the pre-prints out. […] And I guess that’s good. But it is also a bit of a–a stresser because […] maybe we haven’t quite got the message right yet (R-1).

Others warned that the pace of research during the first wave of the pandemic came at a human cost. Some researchers had vastly increased workloads, “going at max […] for 5 months” (R-1), where in some cases “there’s not been a single day when [they’ve] not been working in the laboratory including all Sundays and Saturdays, Easter and so on” (R-4). Whilst some enjoyed this fast-paced moment, for those closer to the frontline it has caused anxiety. As one participant (G-5) explained, “we’ve been fire-fighting”, and at least one member of staff, another explained, “can’t come near the hospital. She has panic attacks” (D-3). Whilst it has already been documented that critical care staff’s mental health has suffered in the pandemic, these participants suggest there may also be concern for the staff involved in the research response [ 33 ].

Seeing what is possible within the exceptional circumstances of a global pandemic led some researchers and PPI managers to question the normal slower pace of regulatory approvals and assert, “if you can do it during COVID-19, you can do it any other time” (R-6). The often slow processes such as ethical approvals, data sharing guidelines, funding applications, and study set-up was a common comparator to what has been possible during the COVID-19 pandemic. Yet, as G-1 explained: “The reason [research processes have] been quicker is just because there’s been less studies.” This is evident in SLAT’s own R&D data. Table 5 documents the difference in study numbers and timeframes from initial sponsorship review to final capacity and capability approval (allowing the site set up and recruitment to commence) across 3 financial years. While some approval processes were adapted, generally research governance requirements, both internal to the Trust and at the regulators the MHRA and the Health Research Authority, remained the same. The quick approval processes were possible because no new non-COVID-19 studies were reviewed, COVID-19 studies were processed as quickly as possible and almost all non-COVID-19 related research was halted.

https://doi.org/10.1371/journal.pone.0256871.t005

Slowing or halting non-COVID-19 research.

For some investigators, the halting of non-COVID-19 research led to a slower pace where researchers could play catch up. “People have just been writing up their papers” (R-3), and this period of time “gave […] the opportunity, freed up time” (R-6) to apply for grants. Whilst many tried to set up studies so they were ready to go when restrictions were lifted, they also found that “regulatory bodies have been slower” (R-6) due to their focus on COVID-19. It was apparent that these researchers had more time to engage in PPI whilst putting these grants together–one PPI manager working in cancer (P-3) suggested “PPI activity has probably increased” during the pandemic. Whilst many researchers were understanding of the need to halt research, others found it devastating for patients and the reputation of UK research. These researchers (R-3 and R-6) pointed to other international contexts where they saw standard research continuing. Researcher R-6 was surprised “with the UK being such a […] clinical trials powerhouse”, that decision-makers didn’t “do everything it could to retain that reputation even through the COVID-19 crisis.”

On 21 st May 2020 the DHSC and NIHR circulated a framework for restarting new and paused non-COVID-19 research. Stratifying research studies into three levels of priority, this framework made no distinction between commercial and non-commercial research. Using this framework, the Trust implemented its operational Restart Plan the week commencing 1 st June 2020. Recommendations on which research studies were important or urgent to restart within each directorate was managed a directorate level, with the Prioritisation Group acting as the Trust-level decision making body for the restart plan. The Prioritisation Group continued to meet weekly to approve restart plans for research projects. By mid-summer restart was well underway but the pace of resuming all these studies could not match the pace that research stopped, and researchers were concerned that they “haven’t really been able to pick up our trial recruitment in between [waves], because recovery has been so slow” (R-5). The time of “let’s get back to normal quickly because COVID’s over”, participant R-2 explained soon turned to “actually, let’s not rush back into things because we don’t know what’s coming.” At this point the centralisation of research infrastructures hindered speed rather than aided it–one research governance manager (G-4) suggested that “we need to respect the decision-making of the research managers and matron and the R&D leads now”, but instead studies were “number 507 in the queue”, and having to “wait another week for this prioritisation meeting” whilst “people are really scared about their finances […] frightened about not finishing […] patients are waiting.”

Adopting new and virtual working practices

The response to COVID-19 pandemic has resulted in broad shifts in working patterns across the labour market, and will likely lead to longer term transformations to work practices stemming from these temporary changes [ 34 – 36 ]. In health, research highlights the accelerated adoption of digital and virtual working practices as a result of COVID-19, such as the use of telemedicine in secondary care [ 37 – 39 ]. The implementation of new working practices, taking advantage of digital technologies for communication and the adaptation of existing processes so that they can be completed (at least in part) during the pandemic are also crucial elements of the research response to COVID-19, particularly for facilitating the continuation of research.

Reducing patient visits.

Clinical research is a highly regulated domain, with strict oversight on practices and procedures, and reporting requirements overseen by multiple regulators. While research setup and governance processes became more centralised, the successful conduct of research during the pandemic required a degree of flexibility and creative adaptation. The move to more remote or virtual ways of completing, supporting, regulating, and facilitating research relied on the speedy adoption of new technologies and ways of working.

On 12 th March 2020, the MHRA issued guidance to sites and investigators “regarding protocol compliance during exceptional circumstances” [ 40 ]. The guidance stated that the MHRA recognised “the difficult current situation” and advised on how to manage trials during the pandemic [ 40 ]. The MHRA also noted in this guidance and on the MHRA Inspectorate website that a redistribution of human resources during the pandemic:

may mean certain oversight duties, such as monitoring and quality assurance activities might need to be reassessed and alternative proportionate mechanisms of oversight introduced (such as phone calls, video calls) to ensure ongoing subject safety and well-being. We would advise a brief risk assessment and documentation of the impact of this [ 40 ].

While this guidance came before the formal research shutdown, it remained important, especially for the small amount of research which was allowed to continue because it was the best or only treatment option left available for patients. However, research practices and trial protocols needed to be adapted, particularly as there were restrictions on who could physically visit hospital sites, as G-5 highlights:

If a protocol says that a participant will have a visit at week 1, week 2, week 3 and week 4 and those are protocol visits–it’s unacceptable not to do those visits. They are protocol deviations. However, during the real surge of the pandemic, those visits couldn’t be done. They couldn’t come in and have an MRI scan, and ECG and bloods taken. What they did have was someone contacting them by telephone or by Skype or other formats, media format–to say, “How are you doing? Are you okay? Is there anything you need to report? Keep in touch” (G-5).

Through delaying or adapting follow-up appointment requirements so they could be completed over the telephone or through videoconferencing, many studies were able to maintain some level of continuity. For these research participating patients, other parts of the research process needed sensitive negotiation, as one PI explains in relation to changes in the format of patient consultations:

Some [participants] were actually a bit reluctant and felt a bit fobbed off to be called at home [when] they were due a face-to-face consultation. We had to be a bit careful about that, particularly if we were discontinuing treatment or discharging people from our care. That almost always went badly if we tried to do it remotely. And if we were having a really definitive conversation like that, it was worth–we found, in the end, patients coming up. Other patients were reluctant to come and readily accepted our advice that rather than coming for a CT scan, we just do a chest x-ray when we next saw them. So, there is a difference of approach, which is personal–not particular to their circumstance (R-5).

Balancing the need for face-to-face consultations and the protection offered by telephone or video consultations required thoughtful, individualised decision-making. For other studies however, digital consultation was simply not possible, which lead to investment in supporting people to attend the hospital:

A few studies have been done remotely, but the one that I have taken on, patients really have to come in. So, we had to do a lot of logistic development there, like bringing them in by car, paying for whatever is necessary just to make sure that they continue coming in (D-6).

Working from home.

Another crucial step in facilitating research and frontline care was asking large numbers of staff to complete their work from home. For some participants, working from home lead to greater productivity, but for many others it meant the blurring of home and work lives. Numerous factors impacted on participants’ experiences, from juggling work alongside home schooling and caring responsibilities, to feelings of isolation, through to more practical issues, such as having a space to work at home, having sufficient internet bandwidth and having stable access to Trust systems (see Box 1 ).

Box 1. Indicative questionnaire responses to: What, if any, challenges have you had to face working from home?.

https://doi.org/10.1371/journal.pone.0256871.t006

While research staff were transitioning to working from home, research spaces were transformed to facilitate frontline care. By April, two of the four Clinical Research Facilities (CRFs) in the Trust were repurposed to deliver frontline care and training space for frontline staff. The remaining two CRFs were refocused on supporting COVID-19 research. The vacant R&D department’s office spaces were also used by Trust staff to facilitate socially-distanced meetings and computer work for those who needed to be onsite. Careful repurposing of offices and clinical space provided the Trust with additional, flexible physical space to assist in the emergency response to the pandemic.

Digitalising research processes.

Research work still occurred within the normal parameters of how health research is conducted in the NHS. These practices were, however, done differently to adapt to COVID-19 social distancing measures.

Firstly, researchers initially had to find a workaround for consent to research in COVID-19 wards. Because of infection control protocols no materials, including paper consent forms, could be removed from COVID positive wards. As there were no protocols in place to gain consent digitally, staff developed a local workaround, as D-1 explains:

we managed to get some […] work phones so that we could take a picture of the consent [form]. So, the consent [form] was held up to the window [in the COVID ward], the team outside could take a picture of the consent form and send it directly through on the Pando app, because [Pando] could have patient details. So, it could then be turned into a PDF and printed and put in the patient file.

Another example of a slow but necessary digital solution was with site monitoring. Site monitoring allows commercial companies and other trial sponsors to visit research sites to assess the quality of the data and ensure study protocols are being followed. Despite MHRA instruction that this “should not add extra burden to trial sites” [ 40 ] and that monitors could not be justified as an extra body in the building, these activities are crucial not just for validating data but for hospitals to be able to bill sponsors for the completed research. Workarounds were further limited because of data protection regulations that prevent the digital transfer of patient data or remote access to Trust systems by external individuals. Where site monitors would usually work alone on site, it became a long and arduous process:

a member of the research team within the Trust sits at a screen and shared that screen through Microsoft Teams with the external person. So, no data is held, no recordings are being done, no data is transferred. But it’s very, very labour-intensive. (G-5)

Whilst workarounds were quickly found for some research practices, others took longer. Despite the fact that Patient and Public Involvement in research (PPI) is a core element of contemporary UK health research [ 17 ], there was initially “zero PPI” (G-1). Rather PPI group managers focused on care work: “putting them in touch with local services that could do things like pick up prescriptions for them, get shopping, get the food boxes delivered” (P-1). It was only with time that not only did researchers planning non-COVID research begin to engage more than usual with their PPI groups, but that funders and regulators demanded that PPI should still be prioritised even in emergency research [ 41 , 42 ].

While researchers voiced concerns about the equity of shifting online and assumptions about who will and will not engage with online PPI, this did not appear to be a problem in practice:

There’s often a sort of an ageism about who can–it’s like kind of what you were just saying about older people can’t do PPI. Well, bollocks. I mean actually they’ve been as responsive to this pandemic as anybody else. The rates of use of, you know, technology, has like skyrocketed in the over 65s, because of their need to talk to their grandchildren etc. So, you know, they are adaptive (R-1).

R-1’s experience was echoed by PPI representatives. Reflecting on the move online, these representatives noted some disadvantages, such as the absence of many social aspects of attending PPI meetings, and video fatigue. But participants were generally positive about the potential of virtual PPI for involving those who cannot always travel long distances due to their illnesses, those who work full-time but could attend an hour session online in their lunch break, and representatives in different countries.

In short, the process of realigning and digitalising research practices was not simply one that sped up research and productivity, but it involved a set of necessary, labour-intensive workarounds. It did, however, also bring about possibilities for long term positive effects, such as diversifying involvement in PPI groups.

COVID-19 has brought to the fore the critical importance of the UK’s clinical research infrastructure which has over the past 15 years become increasingly embedded within the NHS. It has enabled NHS hospitals to deliver research of global importance at an unprecedented pace while simultaneously providing critical care for record numbers of acutely ill patients. We provide an analysis of how this was possible through an in-depth case study of the transformations and reconfigurations of the research system at one research-intensive Trust. Our data show that a large-scale reorganisation of research staff, research infrastructures and research priorities took place during the first few weeks and months of the pandemic. We have documented many of the changes in organisational structure, national policy and everyday working practices that facilitated the Trust’s response to COVID-19. These rapid changes have brought about new ways of working, and new perspectives on the role of research which may have far reaching consequences for the future of the clinical research system in the UK.

The pandemic occasioned a large-scale mobilisation of research staff as a “reserve army.” Research staff were crucial in supporting the care-function of NHS hospitals during the first wave of the pandemic. At the same time, the embedded research system helped to streamline, facilitate and deliver rapid COVID-19 research.

Our study documented some of the challenges that the research system has faced in seeking to operate in a COVID-safe manner. At the same time, our participants described instances of improvisation in order to adapt protocols to the COVID-19 environment. Research staff developed effective practical solutions borne out of necessity, rather than the result of prior planning. This points to the resourcefulness of research staff, but also highlights the ways in which the research system was initially largely absent from existing emergency planning within the health system.

Our research was conducted while the Trust we were studying enacted national COVID-19 policy, responded to local care needs and supported clinical research during a global pandemic. This allowed us to observe these events unfolding while gathering data in a COVID-safe manner. But the pandemic created limitations as well, especially impacting the range of methods we were able to use. While working digitally did give us a first-hand experience of how a large proportion of the decision-making infrastructure had to move online, it limited our access to frontline care and everyday research activity.

There are also limitations of looking at a research active Trust like SLAT. While research is increasingly becoming a routine component of all NHS settings, SLATs size and existing research portfolio meant there was a large amount of resource available to redeploy towards COVID-19 care and research delivery. This picture may not be representative of all NHS Trusts, particularly those that are smaller, where less research takes place. Such resource, particularly in the form of biomedical research infrastructures embedded within NHS Trusts, have provided what Roope et al. label ‘option value’ in research, additional capacity to support public good, which in normal times may appear an inefficient use of resource [ 43 ]. Roope et al. highlight that, in comparison to funded, individual research studies, funding research infrastructures allows greater flexibility and speed of response when emergencies arise, such as the COVID-19 pandemic. While the research workforce, funds and infrastructures were used to support other research prior to COVID-19 (as opposed to being excess capacity), the ability of such resource to be reallocated to COVID-19 at such pace underpinned much of the UK’s success in its research response and much of the work described in this paper. It is important to acknowledge, however, that research capacity is distributed unevenly throughout the NHS, and resources such as Clinical Research Facilities and Biomedical Research Centres tend to be situated in major teaching hospitals and trauma centres rather than geographically more localised hospitals. More research is needed to understand how this unequal distribution of resources affected outcomes of care and research during the pandemic.

In documenting how the pace of research work changed dramatically during the pandemic, both in terms of increasing the speed of certain activities and decreasing the speed of others, our paper also contributes to broader discussions of pace in clinical research. In particular, the key question—how do we most effectively streamline the research pipeline, from bench to bedside? Hanney et al. highlight the potential to overlap parts of the translational research pathway to speed up the process, and some of the barriers to this, such as ethical approvals and resourcing issues [ 30 , 31 ]. Many of these issues were removed during the pandemic because of the targeting of resources towards COVID-19 research. On a more practical level, however, our analysis suggests some ways that the research system may be adapted in the future. The potential offered by digital communications to facilitate certain research and PPI activities have led some clinical researchers to question the necessity for research participants and patients to always attend hospital sites for consultations. Trust-level research prioritisation has proved positive in managing finite local resources as effectively as possible, enabling a more holistic view of the research portfolio at a local level as well as take into account national priorities. At the same time, it is clear that the new technologies and new ways of working that were developed to cope with the crisis are not automatically more efficient, and there is a danger that some key steps such as adequate PPI might be overlooked when research pace is increased. Further research and planning will be needed to develop suitable governance processes to facilitate research activities both when on a crisis footing, and in more routine practice. Wider investment in networked digital applications and hardware (such as Trust compliant laptop computers) is needed to facilitate better working from home.

Our study suggests a number of additional lessons for future national emergency planning and policy. Research infrastructure must be better included in advanced planning, both in terms of the personnel, equipment and other resources that can be made available for redeployment as well as the direct impact that research can make. The capacity to develop new treatments and vaccines should be treated as a strategic asset that is a central part of any emergency response. This has been recognised at the national level, and internationally [ 1 – 3 ], but our data suggest that it has not fully translated into Trust-level operations. Planning for future emergencies should include protocols for the rapid establishment of strategic research prioritisation and redeployment of research infrastructure and capacity. Our data also show that throughout the pandemic, there remained a demand for public input in research, which should be included in future emergency planning. Public input is vital in clinical research, especially in an emergency response which requires publics to respond to clinical-expert advice, and planners should recognise it as such.

Future emergency planning must, however, take into account the exhaustion and stress faced by research staff who suddenly found themselves on the front line of a national mobilisation. Research staff experienced the same well-documented stresses experienced by other NHS workers [ 33 , 44 ]. Emergency planning should acknowledge this human cost and find ways to mitigate such costs and provide support for staff as a national priority.

At a global level, the UK response and its specific organisation, as described within this case study Trust, demonstrates some of the benefits of embedding research infrastructures within a national health provider, and how this set up not only enabled a coherent national response, but also provided staff resource to facilitate such research at great speed as well as support the delivery of frontline care. As we look to the future, how we integrate healthcare and research at more national and global levels are important areas for further research and discussion.

Acknowledgments

We are grateful to Christopher McKevitt and Nina Fudge for providing astute comments on drafts of this paper and to our participants who shared their experiences and time with us during this period of unprecedented strain on the NHS.

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Questions About COVID-19 and Your Research

June 28, 2021

As the COVID-19 pandemic continues to evolve, various Harvard restrictions and processes that were in place have now been re-visited. Moving forward, take the following into consideration when conducting research with human subjects:

• All research and on-campus activity, should still follow Harvard and local school/department guidelines. For instance, this means that personnel who have not yet been authorized to work on campus will need to check with their departments (or divisions or schools) about the appropriate process to obtain authorization prior to the August 2 nd general return date.
• the most up to date University guidance
• EHS COVID-19 resources specifically for laboratories & research
• SEAS & FAS Division of Science: Coronavirus FAQs
• FAS Social Science COVID19 FAQs  
• Note that Harvard continues to require masks indoors, regardless of vaccination status. This guidance will be updated as Harvard requirements and local community incidence changes. Please also check local school or division for more local guidance.
• Some previous restrictions placed on human subjects research have been lifted. Currently physical distancing is no longer required for those vaccinated in all research locations. Please check with your school/division/department for any local guidelines.
• Irrespective of location, individuals interacting with human subjects are advised to continue to wear surgical masks as vaccination status of study participants cannot be assumed. Research study personnel should let participants decide if they would like to wear a mask if the study procedures allow it.
• Researchers may wish to inform their study population of the current COVID-19 status on campus , or in the study location if elsewhere , including level of community transmission of COVID-19 and COVID-19 vaccination coverage.  It continues to be recommended that those that are unvaccinated and at high-risk for COVID-19 complications or immunocompromised not take part in research.
• It is recommended that researchers conduct a brief screening with study participants prior to the study visit. Sample questions may be found below.
• Other restrictions such as those involving travel and working in other locations or at other institutions are still in place. It is important for researchers to follow any guidelines or instructions from the specific facility or location where in-person research would occur. As some research may occur in another state, with another institution, or under the direction of another IRB (as in a reliance agreement situation), this is especially important.  It is the responsibility of the Study Team to keep apprised of potential restrictions and conduct their study accordingly.
• Researchers planning to hire professional companies (survey organization and the like) in other states or countries should do due diligence to make sure that these organizations are taking reasonable coronavirus precautions and are fully aware of local conditions and government restrictions. In particular, Harvard should not be asking these organizations to be engaging in practices that are riskier than their normal business operations.

As restrictions relax, there are still ongoing public health best practices and guidelines to pay attention to:

• Practice safe distancing, when necessary and appropriate.
• Wash or sanitize your hands often and continue respiratory etiquette.
• Perform disinfection of frequently touched objects and surfaces.

Harvard has upgraded its ventilation systems, including installing HEPA filtration units as needed, and will continue to routinely assess airflow. Should you have any questions, please check with your department administrator or building manager. For research off-campus, please be aware that a ventilated space (particularly with open windows) is safer than an unventilated one.

You may access the archive of COVID-19 research information, research restrictions and processes here - https://cuhs.harvard.edu/questions-about-covid-19-and-your-research-ARCHIVE

Sample questions for COVID-19 screening https://projects.iq.harvard.edu/files/scictr/files/crimson_clear_paperform_as_of_06072020.pdf

Q1: ARE YOU EXPERIENCING ANY OF THE FOLLOWING SYMPTOMS? (CHECK ALL THAT APPLY)

☐ Fever, chills, or feeling feverish

☐ New cough (not related to chronic condition)

☐ Shortness of breath or difficulty breathing

☐ New fatigue

☐ Muscle or body aches

☐ New headache

☐ New loss of taste or smell

☐ Sore throat

☐ New nasal congestion or new runny nose (not related to seasonal allergies)

☐ Nausea or vomiting

☐ Diarrhea  

If ANY of the above apply, inform the study participant that they will not be permitted to come to the study visit on that day and that they should contact their health care provider. For medical emergencies, call 911.

If NONE of the above apply, proceed to Q2

Q2: IN THE LAST 14 DAYS, HAVE YOU BEEN IN CLOSE CONTACT WITH ANYONE WHO HAS TESTED POSITIVE FOR COVID-19? (CHECK BOX)

If Yes, the study participant believes that they were exposed to a confirmed case of COVID-19, inform them that they will not be permitted to attend the study visit on that day and that they should contact their health care provider. For medical emergencies, call 911.

If No, inform study participant that they may come to the study visit. Remind them to always wear a facemask as well as any location or study specific information that they should know about.

• Open access
• Published: 26 July 2021

A qualitative study about the mental health and wellbeing of older adults in the UK during the COVID-19 pandemic

• A. R. McKinlay 1 ,
• D. Fancourt 1 &
• A. Burton 1  

BMC Geriatrics volume  21 , Article number:  439 ( 2021 ) Cite this article

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The objective of this study was to examine factors that threatened and protected the wellbeing of older adults living in the UK during social distancing restrictions due to the COVID-19 pandemic.

Semi-structured telephone or video interviews with 20 adults aged over 70. Purposive sampling methods were used to increase diversity within the group. Transcripts were analysed using reflexive thematic analysis.

Participants described potential threats to their wellbeing during the pandemic, including fears for mortality, grieving normal life, and concerns for the future. Participants also described activities and behaviours that helped to protect their mental health, including adopting a slower pace of life, maintaining routine, socialising, and using past coping skills. Many participants drew on their resilience and life experience to self-manage fear and uncertainty associated with the pandemic, using their time during lockdown to reflect or organise end-of-life affairs.

This study provides UK-based evidence that while some older adults experienced challenges during the first wave of COVID-19, many were resilient throughout social distancing restrictions despite early reported concerns of mental health consequences among the older adult population. Our findings highlight the importance of maintaining access to essentials to promote feelings of normality and use of social support to help reduce uncertainty in times of pandemics.

Peer Review reports

Introduction

Existing concerns about the wellbeing of older adults were exacerbated when severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) was declared a pandemic by the World Health Organisation on March 11th, 2020 [ 39 ]. Older adults were identified as especially vulnerable to the virus with high rates of fatalities [ 17 ], particularly in some residential care homes [ 9 , 35 ] during the first wave of the virus [ 23 ]. Hospitalisation rates were high among those living with long term conditions (LTCs) [ 10 , 17 ], many of which affect the older adult population [ 12 , 30 ]. The UK government imposed their first social distancing restrictions on March 23rd, 2020, where adults over the age of 70 were required to self-isolate and “lockdown” at home for 3 months to reduce their infection risk.

Drawing on evidence of negative psychological responses observed during previous epidemics [ 5 ], concerns rose among stakeholders at the start of the pandemic that there would be adverse effects of the COVID-19 pandemic on mental health and wellbeing. Whilst under usual circumstances, older adults do tend to experience psychosocial wellbeing that is equal or better than that of younger age groups [ 11 ], it was predicted that due to the specific isolation rules for older adults and their heightened risk from the virus, psychosocial consequences such as loneliness would be exacerbated in older age groups [ 21 ], leading to negative effects on mental and physical health [ 22 , 34 ]. At a population level, mental health during the COVID-19 pandemic was negatively impacted [ 42 ], but evidence suggests older adults on average experienced more stable and less negative outcomes compared with other subgroups [ 20 , 38 ]. It is presently unclear why this was, or what underlying factors accounted for the experiences reported by older adults during lockdown.

Several theories could help to explain the apparent psychological resilience of older adults during the pandemic. Offers of support from social contacts [ 25 ], a stable living environment [ 6 , 7 ], cohabiting with others [ 19 ], and financial security [ 20 ] may have helped protect many in this group against adverse effects of social distancing measures by providing a psychological buffer against distress. Additionally, older adults may draw on previous life experiences to perceive a greater sense of coherence in the events of the pandemic. Sense of coherence theory incorporates comprehensibility (ability to understand and integrate), manageability (ability to navigate and manage) and meaningfulness (sense making) in relation to interpretation of a new health threat [ 1 ]. It has been shown to support better navigation of life stressors [ 1 ] and is a strong predictor of health status among older adults [ 16 ]. Life wisdom accumulated by older age has also been found to increase the use of problem-focused coping skills, which may protect against distress [ 14 ]. However, whether factors such as these do indeed explain the responses amongst older adults remains unexplored.

Understanding the factors that are transferable across age groups is essential in developing future interventions and policy for those most at risk of harm due to social distancing measures during the pandemic. Further, whilst the average mental health symptom scores and wellbeing levels of older adults have been better than amongst younger age groups during the first wave of the pandemic in the UK [ 15 ], this does not necessarily imply that older adults were psychologically unaffected. Therefore, this study explored in detail the experiences of older adults living in the UK, with two specific research questions: (1) How was the mental health of older adults affected during the pandemic? (2) What factors have protected mental health in older adults during this time?

Study design

This research was undertaken as part of the COVID-19 Social Study (CSS) that began on March 21st 2020 [ 6 , 7 ], which is the largest UK panel survey study on social life during the COVID-19 pandemic. The overall aims of this work are to explore the psychosocial impact of the pandemic among people living in the UK. In this qualitative substudy, conducted separately from the CSS survey, we elicited perspectives of older adults through qualitative interviews, which were carried out from May until September in 2020. We deployed phenomenological methodology to interrogate the data and focus on individual accounts of experience, coupled with reflexive thematic analysis techniques for analysing and framing the research data. The University College London Ethics Committee reviewed and approved this study (Project ID: 14895/005). Content in the following sections are informed by the COREQ reporting guidelines [ 37 ].

Recruitment

Eligibility criteria included: aged 70 years or older, and the ability to speak English sufficiently to understand the study participant information sheet and consent form. We recruited participants by listing the substudy in the CSS newsletter (reaching 3919 subscribers), social media, and through two community organisations who circulated study information within their networks. We did not record response rates during recruitment. People interested in participating were asked to contact the research team directly via email. In order to understand a range of individual experiences, we screened for characteristics (such as gender, ethnicity, educational level) based on previous findings highlighting how some demographics factors have been associated with adverse mental health during the pandemic [ 15 ]. Thus, we used purposive sampling methods to ensure that 20 adults aged over 70 were selected from diverse backgrounds in terms of gender, ethnicity, marital status, and living situation. Recruitment ended after 20 one-off interviews, as the lead author AM identified no new themes during the analysis.

A researcher (AM or AB) responded to expressions of interest in the study with further details about the study and an invitation to ask additional questions. All participants then provided written informed consent prior to attending a remote interview by telephone or video call. Participants were offered a £10 shopping voucher as an expression of gratitude. A team of female, postgraduate-level, qualitative healthcare researchers conducted all interviews (AM, AB, LB, AR, SC). No researcher had prior relations with any research participant. Interview times ranged from 16 to 85 min and lasted for 50 min on average. A complete interview guide can be found in Supplementary File  1 . In brief, interview topics included: normal life before the pandemic, understanding of social distancing guidelines, social life, mental health, and prospection (for question examples, refer Table  1 ). Interview guide questions and prompts were developed based on concepts from social integration and health theory [ 2 ] and Antonovsky’s Sense of Coherence theory [ 13 ]. For example,  “Has the pandemic meant that you have any worries for the future? How are these different from the worries you had before?” Although all general topics were discussed during interviews, not all questions or prompts were used or indeed relevant to each participant’s unique circumstances. Interviewers were guided about the questions and prompts to use according to participant responses.

Data analysis

Researchers audio recorded the interviews with consent from participants, which were then transcribed verbatim by a professional transcription service. All transcripts were manually checked for anonymity after transcription before importing into Nvivo version 12 for analysis. Transcripts were not returned to participants for comment or correction, nor did they provide feedback on the findings. For consistency of coding approach, AM and AB double coded 3 transcripts at the start of data analysis and discussed issues of salience raised by participants. We did not calculate the intercoder reliability or quantify agreement during this stage [ 29 ], but rather focused on the impressions that both researchers had on topics of importance when coding the same passage of text. The lead researcher (AM) used an inductive and deductive, reflexive thematic analysis approach, informed by Braun and Clarke [ 3 , 4 ]. An initial coding framework was established from the topic guide, which was formulated based on supporting theory regarding social network structure, social ties, social support (i.e., [ 1 , 2 ]). This framework was applied to each transcript through line-by-line coding, then the framework was updated with new codes as AM identified new concepts in the transcripts described by participants. Themes and subthemes were therefore developed based on participant narratives, and these were presented to the CSS research team on 3 occasions throughout the analysis stages for formative feedback.

Of those who agreed to take part, 9 participants were women and 11 men, with an average age of 79 (Table  2 ). Fourteen participants reported having a physical health condition, including hypertension, diabetes, arthritis, high blood pressure and cancer. Two participants had an anxiety-related mental health condition diagnosed prior to the pandemic, and 3 said they had caregiving responsibilities for a spouse or family member.

Participants reported varied and nuanced experiences from the outset of the COVID-19 pandemic. We therefore generated two overarching themes, each with 4 subthemes. Many participants described potential threats to their wellbeing, including fears for mortality, grieving normal life, restricted access to support, and concerns for the future. However, many spoke of how they protected mental health in response to pandemic-related uncertainty, including adopting a slower pace of life, maintaining routine, socialising, and using past coping skills.

Potential threats to wellbeing

Some participants described a transient period of uncertainty at the start of the first UK lockdown, associated with nervousness and lack of sleep that resolved quickly. Many were understandably concerned about the impact the pandemic was having on their end-of-life experience and consequences for the rest of the world (Table  3 ). Overall, the government restrictions were described as “fair enough” and “required” by many; however, a commonly reported concern among participants was a fear of needing healthcare assistance during the COVID-19 lockdown. Some participants were worried about catching COVID-19 and additional risks due to their age, ethnicity, and medical history. Others said that lockdown measures meant they were unable to engage in activities that usually formed part of their self-care routine.

Concerns about end-of-life, ageing, and mortality

More than half of the group spoke about how the pandemic caused them to think about their experience of end-of-life, ageing, and mortality.

‘It’s just this idea of all of a sudden realising that I’m getting really old. I think that may be the biggest thing, and it’s a combination of getting really old, and the pandemic is probably accentuating it a bit.’ p10, female, aged 75-79

Those who were retired were particularly worried about the physical or cognitive impact of lockdown on their experience of ageing.

‘I thought I’m going to be forced into being isolated at home. Can’t go to the gym, can’t go out walking, I’m going to physically deteriorate. And I really was quite scared about that.’ p1, male, aged 80-84

Some planned for the possibility of becoming unwell from COVID. For instance, one participant had instructed his family to “stay away” should he become gravely ill, to protect them from the virus. For several participants, a reminder of their own mortality risk came from knowing someone who had passed away from COVID:

‘We’ve had one friend who was in his sixties… Suddenly went into hospital went on a respirator and sadly he died. He’s the only person we know who has directly been affected by it. It hits you and it makes you realise your own mortality. Especially when they keep saying it affects older people worse, so you do worry.’ p13, male, aged 75-79

Several participants described concerns about their perceived vulnerability to COVID due to their age, ethnic group, or pre-existing health concerns:

‘It is scary for us at our age. The thought of getting COVID, that really frightens me and frightens me for anybody close to me that if they got it. It really terrifies me. So, we have been very, very careful.’ p11, female, aged 70-74

Grieving the loss of normality

Understandable emotional responses and a longing for normality were frequently described by participants. Some felt the activities they previously enjoyed, like travelling, going to the theatre, or “hitting a tennis ball,” would never return to the normal they were used to. Others said they felt their life was on hold until the virus was under control or a vaccine was introduced.

‘The new normal is not going to be at all like the old normal, I don't think. We won’t really be able to live the kind of life that we lived before until there’s a vaccine, and it looks as though the vaccine is going to be a very long way off.’ p4, female, aged 70-74

Some said they felt grief about the impact COVID was having on the world, particularly regarding death, hardships, and suffering of others.

‘I knew of the wars and the disease and the hunger, but I think COVID has just put a whole blanket round the lot of it and makes it so immense, the state of the world. The horrible state of the world and that is very depressing when you think about it.’ p19, female, aged 80-84

Several said they did not think a COVID vaccine would help life “go back to where we were before.”

‘Whatever happens, even if a vaccine comes, we will never return to shaking strangers’ hands.’ p16, male, aged 75-79

Healthcare concerns

Concerns about catching COVID were variable among the group, but many were more fearful of being hospitalised for any reason because they believed they were at increased risk of death.

‘A lot of people are scared stiff of catching [COVID], I’m not. The only thing I’m scared of is being carted off to a hospital. I want to die peacefully at home, and I would happily do that any night.’ p8, male, aged 90-94

Those living alone in particular worried about the lack of available health services during lockdown, should anything “go wrong” with their health independently from COVID.

‘A friend of mine has just been diagnosed with breast cancer. She’s had to wait about nine weeks for her op… so you worry about if something like that happened to me, would I get the medical attention I need?’ p12, female, aged 75-79

The potential health threat of COVID meant some participants were scared to leave the house.

‘I do feel that perhaps I should be going out more and that sort of thing, but myself and many, many, almost all my friends say that they are very scared to go out.’ p2, female, 70-74

Several participants had decided to self-isolate before the national restrictions were introduced, mainly due to concerns about age-related vulnerability and pre-existing health conditions.

‘Come mid-March when it all happened… we decided ourselves to lockdown before other people did… I’m over 75 and I’ve got blood pressure controlled by medication but I’m over 75. My BMI was over 30… So, I was worried and we were worried. So, we totally shut down.’ p16, male, aged 75-79

Unable to engage with activities that protect wellbeing

Due to social distancing and travel restrictions, some participants were unable to engage in activities such as weekly religious ceremonies, theatre groups, and sports. Although some activities were able to be undertaken online, this was not always possible.

‘Since COVID, [community activities have] all closed down. Well yes, the book club totally because we can’t discuss books over the phone and also people are of an age where you can’t do social media, whatever you call it.’ p19, female, aged 80-84

Several participants commented on the consequences of an abrupt change in routine on their wellbeing during lockdown.

‘That was the first thing that hit me, boredom. I had no idea what the hell am I going to do next, because I was used to a routine and suddenly the routine was completely disrupted…Now suddenly I had nothing to do and I was really lost. I was walking round the house like a bloody zombie trying to find something to do.’ p15, male, aged 80-84

Protective activities and Behaviours

Despite voicing threats to wellbeing, many participants were positive in reflecting on their lockdown experience. This was attributed to a slowed pace of life, maintaining a routine, using coping skills and resources, and accessing social support (Table 3 ).

Slowing the pace of life

The most commonly reported experience during lockdown was feeling like the pace of life had slowed on an individual and societal level, with more time alone to reflect. Although some participants had described a loss of leisure during lockdown, many had found time for new hobbies, reading, crafts, gardening, and learning a new language.

“Sometimes I wake up in the morning, and I think, oh, it’s another day in lockdown, but I think… there are some little positive benefits…Before lockdown, we were all rushing around doing lots of things, and now we’ve had to slow down. And actually, slowing down has been quite nice. And we’re living in the kind of retirement now that, maybe, our grandparents might have lived, when you just cultivate your garden and do your knitting and crochet... But just generally living a slower pace of life.“ p4, female, aged 70-74

Others felt that being required to stay at home presented an opportunity to focus more on their health by going for regular walks and taking up new forms of physical activity. For some, this was the first time in decades they had been so physically active.

“I’ve now started to ride a proper bike as well. I live in a Close, so we don’t get any through traffic and I can cycle around that Close and I do a few laps. But I haven’t ridden a bike for 60 years.” p1, male, aged 80–84

Half of the group said the slowed pace of life gave more time for introspection: “I’m not rushing around so much anymore, it’s given me the time and the opportunity to notice small things.” p4, female, aged 70–74. In particular, many women in the group said they reflected on their life differently and in a more meaningful or positive way than before. Some used this process of reflection to think about the changes they would make to their lives as a result of their pandemic experience.

‘Having grown quite a lot, I feel quite positive about that. I also think I’m going to try and, maybe, achieve more things when I come out of this [lockdown]. I think when you retire, and as you get older, you become very comfortable in your life. I think, perhaps, I was a bit too comfortable. I need to get out and be more proactive.’ p6, female, aged 70-74

Benefits of routine and social responsibility

Nearly half of participants said that maintaining a routine and sense of purpose was important for their wellbeing during the COVID-19 lockdown: “ You have to have a purpose you see. I think mental resilience is all about having a sense of purpose.” (p15, male, aged 80–84).

Many female participants said they experienced meaningful benefits from social responsibilities, such as cooking a meal for family, phoning friends to check in, or caring for a pet:

‘The important thing is to have the necessity to do things. Whether it is to get in touch with people, to write a piece of something… Obligations are a good source of maintaining ones feeling of self-worth, if you like. So I think it’s very important to make sure that whatever it is, even though you may feel oh what a nuisance I’ve got to do that, the very fact of having to do it is a great psychological benefit.’ p3, female, aged 70-74

Social interactions and support

The nature of socialising had changed since the start of lockdown for many but not all participants. Several said they were socialising to try to carry on “life as normal” , particularly keeping in regular contact with family. For some, this resulted in strengthened relationship bonds and connectedness:

‘I think it has made me and my husband stronger really. We’ve never spent as much time together actually… I think we’ve coped with the shopping and organising that. And we’ve been baking together, we’ve never done things like that. And we took it in turns to cook and tidy up after. We have done really well together. I’m really proud of us.’ p11, female, aged 70-74

Utilising skills, experience and accessing practical resources to cope

Participants who had used mental health services in the past spoke of utilising the skills they had previously learned to help cope with the COVID-19 crisis, including use of mindfulness and meditation.

‘I had a wonderful counsellor who I saw about once a year, and she would set me on the right path. And eventually, after many years of trying, I found a mindfulness and meditation book, about the middle of last year… so I feel that that has been a great help to me. Usually I try in the morning and certainly in the evening, before I go to bed, I do some meditation.’ p2, female, 70-74

Others described experiences of hardship in the past that they used as a comparison with COVID times, such as living through war, displacement, and illness:

‘I was diagnosed with what they call non-invasive bladder cancer… Having gone through the concern of something like that, perhaps Covid, you know, you put it into perspective.’ P13, male, aged 75-79

For some who lived alone, they spoke of being accustomed to isolation long before the pandemic arrived: “I’m a fairly sort of isolated person anyway.” p1, male, aged 80–84 . Several said they were accustomed to being alone due to widowhood or retirement, and therefore lockdown did not prompt a dramatic change in their daily living or social life:

‘I’ve been retired for a nice long time… So, in many ways the lockdown, on one side it hasn’t impacted a great deal, because I was used to being at home and certainly over the past two years to being home alone.’ p20, male, aged 80-84

Participants frequently mentioned their access to practical resources and basic necessities that helped reduce uncertainty, such as access to online shopping for home food deliveries and offers from others to drop off medication. Such arrangements had been made during lockdown, with additional support offered by family, friends, and neighbours.

‘I’ve had online shopping every week since lockdown and I haven’t been to any shop. Prescriptions were delivered and anything I wanted, my daughter would fetch.’ p18, female, aged 80-84

In this study, we sought the views of older adults living in the UK about factors that threatened or protected their mental health and wellbeing during the COVID-19 pandemic. Our study identified understandable emotional responses to the pandemic including fears relating to the virus, the future, and mortality. These are justified in the face of unprecedented circumstances, such as those brought about by COVID-19 [ 28 ]. Overall, older adults mostly described engaging with activities and behaviours that helped to protect their mental health and could explain their improved wellbeing relative to other age-groups. For the most part, participants enjoyed feeling less social pressure and having more time for their hobbies. Similarities in experience were drawn by this group between a slower pace of life germane to retirement and day-to-day realities of the COVID-19 lockdown. As described by older adults in Japan [ 36 ], COVID-19 restrictions introduced comparatively few changes to daily life compared with other groups. Those who experienced greater daily changes and uncertainty, such as parents of young children, working age adults and those affected by financial difficulties, have reported greater levels emotional distress during the pandemic [ 32 ]. Fewer changes and transitions experienced by older adults may therefore explain some of the differences observed in levels of psychological distress.

Congruent with international research [ 25 ], many participants began to self-isolate earlier than guidance required and perhaps consequently, practical arrangements were in place for access to essentials from the outset of lockdown (for instance, food and medication deliveries offered to people aged over 70), resulting in greater sense of coherence of COVID-19 as a potential health threat. Being at home early meant less opportunities for virus exposure, perhaps reducing fear of virus transmission and creating an environment of stable predictability (comprehensibility). Many older adults were offered online shopping slots or received offers of help from friends, family or neighbours for medication collection, meaning access to supplies was not restricted (manageability). And for the most part, older adults in our study made sense of the pandemic with reference to previous major events in their lives, such as war and displacement. Explanations about their behaviours and adherence during this time was described as behaviour “for the greater good” for the rest of society (meaningfulness).

Factors that threatened mental health and wellbeing during COVID-19

Given early evidence publicised on mortality risk for older adults [ 41 ], it is unsurprising participants frequently discussed concerns about their end-of-life. Studies have shown an association between social isolation and reduced physical performance, [ 31 ] causing concern among some participants in our study, with many taking extra steps to preserve their activity levels. While this may have provided positive health benefits in the short term, of most concern is the fear many participants described in leaving the house to access routine or preventative health care, which may have longer-term implications for public health services. Aligned with international research [ 24 ], participants in our study also worried about the impact of COVID-19 on the world and spoke of the impact this had for their wellbeing on a daily basis. Feelings of grief and loss were frequently reported and will likely be felt across many societies in response to the pandemic.

Factors that protected mental health and wellbeing during COVID-19

Quantitative data collected during the first UK lockdown suggests that those with restricted finances and access to basic needs experienced higher levels of adversity during the first wave of the pandemic [ 40 ]. Many participants in our study reported having access to basic supplies (via online shopping slots and medication deliveries) and high levels of perceived social support, which may have helped to create a buffer against stress and uncertainty. National averages showed infrequent experiences of loneliness among older adults during the pandemic [ 26 ], which may be explained by our finding that participants engaged frequently in online methods of interaction, spent time with pets, and/or had regular remote “check-ins” with friends and family to mitigate against loneliness. As such, the heightened concern about loneliness in this age group early on in the pandemic may have led older adults and those around them to proactively take steps that helped prevent these experiences in many individuals. Indeed, many participants reported enhanced feelings of connectedness with social contacts throughout the lockdown, which can prevent isolation and protect against emotional distress [ 34 ]. However, a small number of participants did not feel connected, particularly those who had been separated from their family because of the pandemic, highlighting the difficulties experienced when such support was not available.

Implications

This study highlights a number of important implications. First, the potential threats to wellbeing amongst older adults require further consideration as they have implications for the immediate future and for future pandemics. In trying to remove barriers to healthcare access, supporting older adults in engaging with telecare may be a helpful alternative for some health concerns. However, in our CSS work involving people with mental health conditions in the UK, we found service users felt this was an unhelpful substitute [ 8 , 9 ]. Future research must address indirect health consequences of the pandemic resultant of delayed or diminished access to healthcare during the lockdown. Second, as discussed elsewhere [ 18 ], interventions to mitigate the impact of prolonged isolation on experiences of grief are warranted. Grief can prompt search for meaning and seeking out others with similar experiences. Clinicians play a role in supporting people in processing their grief associated with COVID-19, but spaces online and within groups may also facilitate healing from loss experienced during the pandemic [ 18 ]. Schemes such as social prescribing could be deployed to support older adults psychosocially, and may provide additional support in the aftermath of COVID-19 [ 33 ]. Finally, it is evident that forward-planning by families and communities to address initial concerns about older adults during the pandemic played an important role in supporting their coping and buffering against loneliness, isolation, and uncertainty. For future pandemics, such a response is again encouraged. In particular, interventions that bolster feelings of certainty and connectedness may serve as helpful targets for those experiencing pandemic-related distress.

Strengths and limitations

A strength of this research is that data were collected from participants via purposive recruitment throughout the first UK lockdown and as restrictions began to ease before the second wave. However, findings must be interpreted cautiously. Our participants were generally healthy, with well-established social networks, living in the community, and predominantly without solo caregiving responsibilities. Therefore, their experiences are not likely to be representative of those living with serious health concerns, who may be more likely to have experienced distress during the pandemic [ 27 ]. We conducted interviews via video call or telephone, which meant being able to capture experiences safely amid restrictions, but also means that those without access to the internet or telephone would not have had equitable access to participate and may have faced additional challenges. We also did not collect data on, or sample based on socioeconomic status or previous COVID-19 infection. To our knowledge, no participant had experienced a confirmed diagnosis. Future studies are needed to ascertain how older adults who experienced COVID-19 were impacted psychologically [ 26 ].

Conclusions

Contrary to early concerns at the start of the pandemic, the mental health of older adults fared well compared with other age groups, and this study adds to the literature on this topic by providing evidence as to why these results may have been found. Overall, many participants described their experience of lockdown as a time for reduced social pressures and increased opportunities for personal growth. However, this group experienced challenges, particularly among those who were concerned about staying well, advancing frailty, or hospitalisation risk. This research therefore highlights the importance of nuance when considering the relative better experiences of older adults. It also provides valuable insight into factors that protected wellbeing of older adults during the COVID-19 pandemic, which may be utilised by policy makers to support at-risk groups who have experienced psychological hardship during the crisis, including timely access to essential supplies, communicating offers of help to improve perceived support, and providing structure and routine in times of uncertainty.

Availability of data and materials

The datasets generated and analysed during the current study are not publicly available and are not available from the corresponding author on request due to reasons concerning participant privacy and confidentiality.

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Acknowledgements

The researchers are grateful for the support of AgeUK, the Alzheimer’s Society and Healthwise Wales during recruitment. Many thanks to Anna Roberts, Louise Baxter Sara Esser and Rana Conway for their help with conducting interviews. Thank you to the COVID-19 Social Study Team (Tom May, Katey Warren, Joanna Dawes, and Henry Aughterson) who provided feedback on the themes and subthemes. We wish to thank the anonymous reviewers for their constructive suggestions that helped us to refine this manuscript.

This work was supported by the Nuffield Foundation [WEL/FR-000022583], but the views expressed are those of the authors and not necessarily the Foundation. The study was also supported by the MARCH Mental Health Network funded by the Cross-Disciplinary Mental Health Network Plus initiative supported by UK Research and Innovation [ES/S002588/1], and by the Wellcome Trust [221400/Z/20/Z]. DF was funded by the Wellcome Trust [205407/Z/16/Z].

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DF and AB were involved with study design. AM collected study data and led the analysis and interpretation of study findings, with support from AB. AM wrote the first paper draft. DF and AB provided critical revisions. All authors have read and approve the final version of the manuscript.

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Interview topic guide: Adult groups.

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McKinlay, A.R., Fancourt, D. & Burton, A. A qualitative study about the mental health and wellbeing of older adults in the UK during the COVID-19 pandemic. BMC Geriatr 21 , 439 (2021). https://doi.org/10.1186/s12877-021-02367-8

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Research Highlights

Local, regional, and global adaptations to a compound pandemic-weather stress event.

Studies have shown the frequency and intensity of compound extreme events has been increased in past decades and are expected to be amplified in the future. With the possibility of co-occurrence with economic extremes, they can have significant implications for agriculture and food security through changes in the demand and supply side of the food systems. Here we introduce a coupled water-agriculture-economy model to capture the likely impact of a compound pandemic-weather event. We compare the estimated impacts between two specifications of the model: with and without adaptation of the human system.

The results illustrate the critical role of global-local-global adaptations and connections in understanding the strategies to improve the resilience of the human system to compound extremes. This paper shows how better access to global markets and availability of natural resources can provide benefits to the human system by improving food security but also, they can reduce the likely environmental benefits and avoided GHG emissions.

Food security can be threatened by short-term extreme events that negatively impact food production, food purchasing power, and agricultural economic activity. At the same time, environmental pollutants like greenhouse gases (GHGs) can be reduced due to the same short-term extreme stressors. Stress events include pandemics like COVID-19 and widespread droughts like those experienced in 2015. Here we consider the question: what if COVID-19 had co-occurred with a 2015-like drought year? Using a coupled biophysical-economic modeling framework, we evaluate how this compound stress would alter both agricultural sector GHG emissions and change the number of undernourished people worldwide. We further consider three interdependent adaptation options: local water use for crop production, regional shifts in cropland area, and global trade of agricultural products. We find that GHG emissions decline due to reduced economic activity in the agricultural sector, but this is paired with large increases in undernourished populations in developing nations. Local and regional adaptations that make use of natural resources enable global-scale reductions in impacted populations via increased global trade.

Local, regional, and global adaptations to a compound pandemic-weather stress event Haqiqi, Iman, Danielle S Grogan, Marziyeh Bahalou Horeh, Jing Liu, Uris L C Baldos, Richard B Lammers, and Thomas W Hertel . 2023 . “Local, Regional, And Global Adaptations To A Compound Pandemic-Weather Stress Event” . Environmental Research Letters 18 (3). IOP Publishing : 035005. doi:10.1088/1748-9326/acbbe3.

Study Tracks Shifts in Student Mental Health During College

Dartmouth study followed 200 students all four years, including through the pandemic.

Phone App Uses AI to Detect Depression From Facial Cues

A four-year study by Dartmouth researchers captures the most in-depth data yet on how college students’ self-esteem and mental health fluctuates during their four years in academia, identifying key populations and stressors that the researchers say administrators could target to improve student well-being. 

The study also provides among the first real-time accounts of how the coronavirus pandemic affected students’ behavior and mental health. The stress and uncertainty of COVID-19 resulted in long-lasting behavioral changes that persisted as a “new normal” even as the pandemic diminished, including students feeling more stressed, less socially engaged, and sleeping more.

The researchers tracked more than 200 Dartmouth undergraduates in the classes of 2021 and 2022 for all four years of college. Students volunteered to let a specially developed app called StudentLife tap into the sensors that are built into smartphones. The app cataloged their daily physical and social activity, how long they slept, their location and travel, the time they spent on their phone, and how often they listened to music or watched videos. Students also filled out weekly behavioral surveys, and selected students gave post-study interviews. 

The study—which is the longest mobile-sensing study ever conducted—is published in the Proceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies .

The researchers will present it at the Association of Computing Machinery’s UbiComp/ISWC 2024 conference in Melbourne, Australia, in October. 

These sorts of tools will have a tremendous impact on projecting forward and developing much more data-driven ways to intervene and respond exactly when students need it most.

The team made their anonymized data set publicly available —including self-reports, surveys, and phone-sensing and brain-imaging data—to help advance research into the mental health of students during their college years. 

Andrew Campbell , the paper’s senior author and Dartmouth’s Albert Bradley 1915 Third Century Professor of Computer Science, says that the study’s extensive data reinforces the importance of college and university administrators across the country being more attuned to how and when students’ mental well-being changes during the school year.

“For the first time, we’ve produced granular data about the ebb and flow of student mental health. It’s incredibly dynamic—there’s nothing that’s steady state through the term, let alone through the year,” he says. “These sorts of tools will have a tremendous impact on projecting forward and developing much more data-driven ways to intervene and respond exactly when students need it most.”

First-year and female students are especially at risk for high anxiety and low self-esteem, the study finds. Among first-year students, self-esteem dropped to its lowest point in the first weeks of their transition from high school to college but rose steadily every semester until it was about 10% higher by graduation.

“We can see that students came out of high school with a certain level of self-esteem that dropped off to the lowest point of the four years. Some said they started to experience ‘imposter syndrome’ from being around other high-performing students,” Campbell says. “As the years progress, though, we can draw a straight line from low to high as their self-esteem improves. I think we would see a similar trend class over class. To me, that’s a very positive thing.”

Female students—who made up 60% of study participants—experienced on average 5% greater stress levels and 10% lower self-esteem than male students. More significantly, the data show that female students tended to be less active, with male students walking 37% more often.

Sophomores were 40% more socially active compared to their first year, the researchers report. But these students also reported feeling 13% more stressed during their second year than during their first year as their workload increased, they felt pressure to socialize, or as first-year social groups dispersed.

One student in a sorority recalled that having pre-arranged activities “kind of adds stress as I feel like I should be having fun because everyone tells me that it is fun.” Another student noted that after the first year, “students have more access to the whole campus and that is when you start feeling excluded from things.” 

In a novel finding, the researchers identify an “anticipatory stress spike” of 17% experienced in the last two weeks of summer break. While still lower than mid-academic year stress, the spike was consistent across different summers.

In post-study interviews, some students pointed to returning to campus early for team sports as a source of stress. Others specified reconnecting with family and high school friends during their first summer home, saying they felt “a sense of leaving behind the comfort and familiarity of these long-standing friendships” as the break ended, the researchers report. 

“This is a foundational study,” says Subigya Nepal , first author of the study and a PhD candidate in Campbell’s research group. “It has more real-time granular data than anything we or anyone else has provided before. We don’t know yet how it will translate to campuses nationwide, but it can be a template for getting the conversation going.”

The depth and accuracy of the study data suggest that mobile-sensing software could eventually give universities the ability to create proactive mental-health policies specific to certain student populations and times of year, Campbell says.

For example, a paper Campbell’s research group published in 2022 based on StudentLife data showed that first-generation students experienced lower self-esteem and higher levels of depression than other students throughout their four years of college.

“We will be able to look at campus in much more nuanced ways than waiting for the results of an annual mental health study and then developing policy,” Campbell says. “We know that Dartmouth is a small and very tight-knit campus community. But if we applied these same methods to a college with similar attributes, I believe we would find very similar trends.”

Weathering the pandemic

When students returned home at the start of the coronavirus pandemic, the researchers found that self-esteem actually increased during the pandemic by 5% overall and by another 6% afterward when life returned closer to what it was before. One student suggested in their interview that getting older came with more confidence. Others indicated that being home led to them spending more time with friends talking on the phone, on social media, or streaming movies together. 

The data show that phone usage—measured by the duration a phone was unlocked—indeed increased by nearly 33 minutes, or 19%, during the pandemic, while time spent in physical activity dropped by 52 minutes, or 27%. By 2022, phone usage fell from its pandemic peak to just above pre-pandemic levels, while engagement in physical activity had recovered to exceed the pre-pandemic period by three minutes. 

Despite reporting higher self-esteem, students’ feelings of stress increased by more than 10% during the pandemic. By the end of the study in June 2022, stress had fallen by less than 2% of its pandemic peak, indicating that the experience had a lasting impact on student well-being, the researchers report. 

In early 2021, as students returned to campus, their reunion with friends and community was tempered by an overwhelming concern about the still-rampant coronavirus. “There was the first outbreak in winter 2021 and that was terrifying,” one student recalls. Another student adds: “You could be put into isolation for a long time even if you did not have COVID. Everyone was afraid to contact-trace anyone else in case they got mad at each other.”

Female students were especially concerned about the coronavirus, on average 13% more than male students. “Even though the girls might have been hanging out with each other more, they are more aware of the impact,” one female student reported. “I actually had COVID and exposed some friends of mine. All the girls that I told tested as they were worried. They were continually checking up to make sure that they did not have it and take it home to their family.”

Students still learning remotely had social levels 16% higher than students on campus, who engaged in activity an average of 10% less often than when they were learning from home. However, on-campus students used their phones 47% more often. When interviewed after the study, these students reported spending extended periods of time video-calling or streaming movies with friends and family.

Social activity and engagement had not yet returned to pre-pandemic levels by the end of the study in June 2022, recovering by a little less than 3% after a nearly 10% drop during the pandemic. Similarly, the pandemic correlates with students sticking closer to home, with their distance traveled nearly cut in half during the pandemic and holding at that level since then.

Campbell and several of his fellow researchers are now developing a smartphone app known as MoodCapture that uses artificial intelligence paired with facial-image processing software to reliably detect the onset of depression before the user even knows something is wrong.

Morgan Kelly can be reached at [email protected] .

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It’s really the cortex that is responsible for generating people’s emotional responses, by changing the way we see and attach meaning to events in our environments.

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Clinician Opinions Regarding the Usefulness of the BOSA for ASD Assessment in a Service for Children Aged Under 12 Years

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The COVID-19 pandemic and the subsequent social distancing policies forced healthcare teams to drastically alter the way they deliver services. This was particularly challenging for clinicians involved in diagnosing autism spectrum disorder (ASD), as assessment tools and methods required face-to-face social interactions between clinicians and children. To address this, the Brief Observation of Symptoms of Autism (BOSA) was developed to ensure that people suspected of ASD can receive diagnostic assessments during the pandemic. This project aimed to explore clinicians’ opinions on the BOSA, particularly regarding the usefulness of the assessment for clinicians to clarify diagnostic outcomes of ASD assessments. Both quantitative and qualitative data was gathered within an NHS community paediatric team. This included a questionnaire for clinicians to complete, and data from the BOSA assessments done in the service. Thematic analysis and descriptive statistics revealed that many clinicians felt that the BOSA can be beneficial in certain cases, such as selective mutism, and found the BOSA particularly helpful for observing parent–child interactions. These findings highlighted important information that the Autism Diagnostic Observation Schedule Second Edition (ADOS-2) does not give opportunities to observe. Clinicians reported that at times, the BOSA materials, brevity and parental administration created barriers to gathering information for diagnostic decisions. As may be expected, clinicians showed a clear preference for the more familiar and validated ADOS-2. However, the study highlights perceived limitations of the ADOS-2 and strengths of the BOSA, with recommendations made for future practice and research.

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Introduction

The coronavirus (COVID-19) pandemic has imposed major changes to the delivery of healthcare worldwide. In many settings, healthcare has been predominantly transitioned to telehealth (via phone or video calls), creating challenges but also unique benefits. This transition was particularly challenging for services assessing children for neurodevelopmental disorders such as autism spectrum disorder (ASD; Zwaigenbaum et al., 2021 ).

To reliably diagnose ASD, one of the key areas that needs to be assessed is social communication and interaction (American Psychiatric Association, 2013 ). Information is often gathered through an account of an individual’s developmental history, school reports and behavioral observations. Prior to COVID-19, clinicians would often use the Autism Diagnostic Observation Schedule Second Edition (ADOS-2; Lord et al., 2012 ) as an observational tool to gather information, particularly regarding social communication and interaction skills.

The ADOS-2 is a structured play-based assessment designed for face-to-face, distraction-free settings using standardised objects and toys. Clinicians must be trained in ADOS-2 administration and scoring to conduct an ADOS-2 assessment. Due to the necessity for a reliable ADOS-2 to be in-person and for items to be touched by both client and clinician, the ADOS-2 is not COVID-19 secure. Additionally, the United Kingdom (UK) government COVID-19 safety regulations and National Health Service (NHS) policies for using personal protective equipment (PPE), (especially wearing face masks), are not only far from the ADOS-2 standardised procedures, they create barriers to establishing the interpersonal context required to assess certain ASD symptoms (Berger et al., 2022 ).

In response to COVID-19, the developers of the ADOS-2 created the Brief Observation of Symptoms of Autism (BOSA; Lord et al., 2020 ) to ensure patients suspected of ASD could receive safe and comprehensive diagnostic assessments. The BOSA is based on standardised activities selected and adapted from two validated ASD assessment tools: the ADOS-2 (Lord et al., 2012 ) and the Brief Observation of Social Communication Change (BOSCC; Grzadzinski, 2018 ; Grzadzinski et al., 2016 ).

The social interaction activities used within the BOSA provide opportunities to create social situations in which clinicians can observe symptoms of ASD within a 12-to-14-min observation (Lord et al., 2020 ). There are four separate modules of the BOSA that can be administrated depending on an individual’s age and language level. The BOSA-MV (minimally verbal) is appropriate for an individual of any age who is nonverbal or uses only single words or phrases. The BOSA-PSYF (phrase speech and young fluent) can be chosen for verbally fluent children aged six to eight. The BOSA-F1 (fluent speech F1) is designed for verbally fluent children aged between six to eight and 10 years old. The BOSA-F2 (fluent speech F2) is appropriate for verbally fluent individuals aged 11 and older, including adults. The latter two modules are very similar, except for the materials and questions being adapted to be age appropriate.

Unlike the ADOS-2, the BOSA is designed to be facilitated by any adult able to interact with a child without PPE (for example the child’s family member) to comply with COVID-19 restrictions. During the assessment, an instruction sheet is given to this adult to show them how to present and lead the child through the structured activities using the toys and objects provided. ADOS-2 trained clinicians will observe, and this can be done in a variety of ways, including through a one-way mirror in an observation room, via a video call or by being in the same room and maintaining the required social distancing and PPE. Once the BOSA is completed, the clinicians evaluate any ASD symptoms observed based on the BOSA scoring guidelines written by Lord et al., ( 2020 ).

ASD telehealth is a rapidly evolving field, and it is important to note that at the time of writing this report, the BOSA is in the initial stages of psychometric evaluation. Dow et al. ( 2021 ) have developed some algorithms to improve the psychometrics of the BOSA and other research may be investigating predictive effectiveness (Rynkiewicz et al., 2020 ).

The BOSA is not validated yet, and so the sensitivity and specificity of the assessment is unknown, and while there are recommended cut-off scores these are preliminary at present (Dow et al., 2021 ; Rynkiewicz et al., 2020 ). Lord et al., ( 2020 ) also highlight additional clinical considerations for clinicians. For example, due to the structured activities in the BOSA, certain symptoms may not be as readily apparent (e.g., restricted/repetitive behaviours and interests) as they are throughout the ADOS-2. Because of this and the brevity of the observation period there is a possible risk for “false negatives” (i.e., ruling out ASD when the person does have ASD; Lord et al., 2020 ).

However, clinicians can gather a lot of information from observing interactions between a parent and child, even if this is not formally scored in the context of the BOSA activities (Lord et al., 2020 ). An additional benefit of the BOSA is that it takes approximately 30 min to administer, which is significantly shorter when compared to the ADOS-2, which is often conducted over an hour-long appointment. This is a big advantage in already stretched healthcare systems where waiting lists for ASD assessments are exceeding target waiting times (NHS England, 2019 ; Jayanetti, 2022 ). Long waits for assessments are likely to cause negative diagnostic experiences, increased levels of stress and reduced levels of satisfaction in the diagnostic process (Crane et al., 2016 ; Howlin & Moore, 1997 ; Mori et al., 2009 ) as well as delaying parents and children accessing support (Mansell & Morris, 2004 ). Thus, if the BOSA is more time efficient and as useful for clinicians as the ADOS-2, it would be advantageous for services to consider taking forward.

Prior to the pandemic, telehealth ASD assessments had been developed and were being used, particularly for children in rural and low-socioeconomic communities who struggled to access ASD assessments (Nazneen et al., 2015 ; Smith et al., 2017 ). The Naturalistic Observation Diagnostic Assessment (NODA) is a store-and-forward telehealth approach to ASD diagnosis that relies on parents and care givers sharing video recordings of live events with clinicians for review and assessment. This approach enables families to record videos in their home during their day-to-day activities over several days, capturing a wider range of behaviours compared to a single clinic-based or live telehealth assessment (Smith et al., 2017 ). Research has shown diagnostic decisions made after completing a NODA are similar to those made after an in-person assessment (Smith et al., 2017 ).

Additionally, the Childhood Autism Rating Scale, Second Edition (CARS-2) was developed prior to the pandemic (Schopler et al., 2010 ). The CARS-2 is a standardised clinician observational tool for autism symptoms in children. Clinicians complete a 15-item rating scale after observing the child’s behaviour. This is scored up and can help to identify children with autism and determine symptom severity through quantifiable ratings based on the observation and a parent interview. As with the BOSA, this can be done face-to-face or via telehealth over a videoconferencing platform (Berger et al., 2022 ).

However, before COVID-19, virtual ASD assessment methods were not commonly used within the NHS. In addition to the BOSA, other telehealth ASD assessments were developed in response to the pandemic, such as the TELE-ASD-PEDS (Corona et al., 2020 ). The TELE-ASD-PEDS was created to allow clinicians to remotely observe interactions (roughly lasting 15–20 min) between caregivers and their children to help with diagnostic decision-making. The tool was designed for children under 36 months of age and involves a range of eight activities designed to provide clinicians opportunities to assess any potential symptoms and behaviours related to ASD. Although there are benefits to the TELE-ASD-PEDS tool (e.g., reduced travel time and costs, familiarity of environment and people), certain limitations were noted (Wagner et al., 2021 ). Technological barriers such as the difficulty of capturing certain behaviours on the camera (e.g. eye contact), unstable internet connections and lack of familiarity with the video conferencing software caused challenges for clinicians (Corona et al., 2021 ; Wagner et al., 2021 ). It is unclear as to whether the TELE-ASD-PEDS has been administrated in person whilst complying to COVID-19 regulations as the BOSA has, as this methodology could eliminate several technological limitations. Additionally, the age range for the TELE-ASD-PEDS is significantly smaller than that of the BOSA.

Another recently developed virtual ASD assessment tool The Adapted Virtual Autism Behavior Observation (A-VABO; Kryszak & Albright, 2020 ). The A-VABO invites caregivers to interact with their child by facilitating 15 activities following a script. Unlike the BOSA, the family are able to use their own toys and games, although some activities require specific items which for some families (particularly of lower socio-economic backgrounds) can become a barrier to administration (Berger et al., 2022 ). Furthermore, the reading level for the A-VABO script and instructions is deemed five grades higher than that of the BOSA which again can cause challenges for facilitating caregivers and clinicians.

This paper reports on an NHS community paediatric service in England who, like many services, started using the BOSA in response to COVID-19. The BOSA was chosen due to the similarity to the ADOS-2, for which all clinicians were already trained. This also made the BOSA cost-effective for the NHS (e.g., ADOS-2 toys and games were compatible, the training and materials were free to those with prior ADOS-2 training). As some COVID-19 restrictions were being lifted, the service wanted to evaluate how useful clinicians were finding the BOSA for diagnostic decision making and whether it should continue to be used.

This project will use quantitative and qualitative data gathered within an NHS community paediatrics team. The project aims to capture clinicians’ views of using the BOSA and explore if it is useful to clarify diagnostic decisions. The results of this project will help inform services about the continued use of the BOSA.

This project used a mixed methods design comprising of two components to explore the usefulness of the BOSA for diagnostic decision making: (1) forced-choice questions related to clinicians’ opinions on the BOSA; and (2) a thematic analysis of open-ended questions related to clinicians’ opinions of the BOSA.

Service Context

The study was completed within an NHS community paediatrics team in the East of England, commissioned to assess ASD in children under 12.

Children were referred to the service most commonly by their school’s special educational needs coordinator. Following this, teachers and parents/caregivers would complete the Social Communication Questionnaire (SCQ; Rutter et al., 2003 ) and a range of social descriptors which would enable the services pediatricians to screen the referrals to either accept for further assessment in the service or reject due to lack of evidence suggesting the presence of ASD.

Once accepted into the service, an ASD assessment included additional questionnaires completed by parent/caregiver and school, an appointment gathering an in-depth developmental history, and a BOSA. Prior to COVID-19, an ADOS-2 was part of the assessment. Children and their care givers completed the BOSA together whilst two ADOS-2 trained clinicians (community paediatricians, clinical psychologists, or speech and language therapists) observed either at a distance or through a one-way mirror. Clinicians chose the appropriate BOSA module for the assessment depending on the child’s age and language abilities. The outcomes of assessments were decided by the observing clinicians following the BOSA. Outcomes included diagnostic decisions (i.e., diagnosed, not diagnosed, tentative diagnosis and unable to conclude) and any subsequent decisions (i.e. additional information needed or onward referrals made).

As local COVID-19 infection control guidance was relaxed, clinicians were no longer required to socially distance from children attending clinic as long as face masks were worn. This raied the query over whether the BOSA was perceived as more helpful than an ADOS-2 wearing a face covering. In this instance neither instrument would be considered a validated measure.

Participants and Procedure

Twelve clinicians working within the community paediatrics team took part in an online questionnaire about their opinions on the BOSA (see “ Appendix A ”). All clinicians were given a brief explanation of the project and consented to participate prior to completing the online questionnaire. The questionnaire comprised of three open-ended qualitative questions and eight quantitative questions which aimed to capture clinicians’ opinions on how helpful the BOSA is for making diagnostic decisions, and comparisons between the ADOS-2 and the BOSA. Two clinicians did not complete the qualitative section of the questionnaire. All clinicians were ADOS-2 trained (see Table  1 ), completed the BOSA training virtually, and had facilitated at least one BOSA prior to completing the questionnaire (see Table  2 ). The questionnaire was created via the online platform Qualtrics and sent to clinicians via email.

It is important to note the context in which this data was gathered and highlight that clinicians were far more familiar with the ADOS-2 compared to the BOSA. Many of the clinicians have four or more years of experience administrating the ADOS-2 (see Table  1 ), and yet only four clinicians had administrated the BOSA more than 10 times at the time of gathering the data (see Table  2 ). Furthermore, some may have more or less familiarity with the individual BOSA modules, creating further unfamiliarity with the BOSA as an assessment tool. The descriptive statistics regarding the four different module assessments completed by the clinicians can be found in Table  3 .

Quantitative Data Analysis

Descriptive statistics were calculated using the quantitative data from the questionnaire with the aim of using these results to expand the findings of the thematic analysis.

Qualitative Data Analysis

The open-ended questions were analysed by the main researcher and second researcher using a thematic analysis approach, closely following the six-step approach of Braun and Clarke ( 2006 ). The researchers individually read the qualitative answers from participants multiple times before labelling individual data extracts and sorting these into codes. Rather than starting with preconceived notions of what the codes should be, an inductive approach to coding was chosen to allow the narrative to emerge from the qualitative data itself. The researchers discussed their individual coding and collaborated to create a codebook. This allowed the data to be read and re read, double checking the codes against the codebook, thus ensuring consistency and validity.

After this, codes with similar meanings were grouped together to form initial subthemes. Subthemes with similar information were then linked together which allowed the main themes to be developed. Once a consensus of themes was reached by the researchers, the answers that the clinicians gave were re-read to confirm the relevance of the themes and that they represented the original qualitative data.

Ethical approval was received from the Faculty of Medicine and Health Sciences Research Ethics Committee at the University of East Anglia (ethics reference code: 2021/22-020). Consent to complete the project within the local NHS service was granted by the trust’s Clinical Audit & Effectiveness Team.

Quantitative Data

When asked to compare the BOSA to a standard ADOS-2, it was clear that clinicians found the BOSA less helpful for diagnostic decision making (see Table  4 ). No clinicians believed the BOSA is more helpful than the ADOS-2. It is important to highlight that this the standard ADOS-2 is a validated measure to use for ASD assessment, whereas the BOSA is not. It is therefore unsurprising that clinicians showed a clear preference for the ADOS-2.

Most clinicians believed that completing an ADOS-2 with face masks was also more helpful for diagnostic decision making compared to a BOSA (see Table  4 ). However, 25% of clinicians believed a BOSA would be more helpful for diagnostic decision making compared to an ADOS-2 with face masks. In this instance, neither assessment method is validated. However, these results may still be expected, as the clinicians are highly familiar with the ADOS-2. Half of the participants have been using the ADSOS-2 for four or more years, whereas the BOSA has been used within the service for less than a year, with the majority of clinicians having only used the BOSA less than 10 times. Furthermore, some of the BOSA modules were scarcely administrated, again showing the lack of familiarity clinicians had with the BOSA.

However, interestingly clinicians did still show a preference to continue to administrate the BOSA in some instances. When asked if they thought the BOSA would be helpful to use even after COVID-19 restrictions were removed, 60% of clinicians answered yes, with the remaining 40% being split equally between no and unsure.

Clinicians’ confidence in diagnostic decisions after a BOSA were mixed (see Table  5 ), but the majority stated only sometimes their confidence in the diagnostic decision increased after a BOSA.

Similar mixed responses were found when asking clinicians if doing the BOSA changed their opinions around their diagnostic decisions prior to the BOSA (see Table  5 ).

Five Clinicians disagreed that the BOSA was more time efficient compared to doing an ADOS-2. However, there were four clinicians who agreed that the BOSA can be more time efficient (see Table  6 ). This disparity in opinions was also captured in the qualitative data from the questionnaire.

Thematic Analysis

The following themes were found and are presented in this section with supporting illustrative quotes from the clinicians (C). The themes are summarised in Table  7 .

Administration of the BOSA

Parental Administration Issues: Clinicians’ comments about parents and carers administrating the BOSA indicate that at times it can be difficult to get an accurate representation of the child’s communication and social interaction skills. In fact, seven of the 10 clinicians expressed parent administration of the BOSA can be detrimental for gathering necessary information for diagnostic decision making. This appears to be due to parents either being overly skilled at scaffolding their child during the BOSA (meaning difficulties could be suspected but not directly observed) or parents struggling with their own communication (impacting on the interaction opportunities) .

The main problem with the BOSA is that evidence for communication difficulties was not captured even though suspected due to amazing scaffolding that parents provide with their children. On other occasions, the BOSA was not useful due the inability of the parent to respond to child’s cues leaving the impression of a child with difficulties (C7) …sometimes a parent can scaffold so well, the child does not present as autistic in the room (C1) …if the parent is not ‘tuned’ into the assessment we do not always get the same information than from an ADOS (C5) The parent delivered BOSA is very dependent on the skill and preparedness of the parent in how useful it is (C3)

Additionally, clinicians mentioned parent–child relationships and parental mental health can also impact the BOSA administration.

The BOSA can be negatively impacted by a difficult relationship with the administrator (parent/carer) and any of parent’s own social communication difficulties or anxiety about the observation (C8) …a child’s interaction with their parent can be quite shut down (especially in cases of developmental trauma/parental mental health difficulties), but then in talking with them afterwards, they have demonstrated much better social communication (C10)

Alternative Administration by Staff: Some clinicians suggested the BOSA could be administrated by a professional, rather than a parent due to the complexities that parent–child interactions can bring.

BOSA could be run with one member of staff potentially. (C4) If we are doing BOSA, I think it is important for a clinician to have a short time interacting with the child directly as well (C10) where a child observation is still an important part of assessment, possibly delivered by a professional (C3)

In fact, one clinician stated they have had to take over the administration of the BOSA due to parents having difficulties administrating.

…on many occasions I had to step in as the parent had not been able to generate a "conversation" in a natural way. (C3)

Usefulness of the BOSA

Parent–child Interaction Observations: Although clinicians felt parental administration of the BOSA could be detrimental for capturing the child’s communication and interaction skills, six out of the 10 clinicians mentioned the BOSA creates useful opportunities to observe parent–child interactions.

…the parent delivered BOSA can give useful information about the parent child relationship not usually available via the professionally delivered ADOS (C3) I really appreciated the observation of the parent child interaction (C5) It can be helpful to observe parent/child interaction which you do not get from the ADOS (C8) BOSA good for understanding the parent-child relationship. (C10) BOSA helpfully gives parental/ cater interaction and scaffolding (C4)

When clinicians were asked if they believed it would still be helpful to use the BOSA even if all COVID-19 restrictions were removed, six clinicians agreed that it would be helpful, of which four specifically stated that they would find the BOSA useful for observing parent–child interactions.

… if there is a particular reason to want an observation of parent/child interaction as it [the BOSA] allows a structured way to do this. (C8) To observe parent child observation but I might do a combination of ADOS and BOSA to get a comprehensive picture of the child’s difficulties. (C5) To observe the parent–child interaction, and how different the child’s communication is in that context to other contexts (C10) BOSA gives very useful additional information about the dynamic between the child and the parent/carer that we otherwise wouldn’t see eg how parent interacts, parental ASD traits, if the parent scaffolds their child etc. (C1)

Specific Cases: Many clinicians stated the BOSA can be useful and appropriate tool in certain cases but not others.

…in some cases it [the BOSA] seems to be sufficient on its own provided you have a really good developmental history and school report. Depends on the child. (C1) I think the BOSA is most helpful in quite straightforward cases and in the more subtle or complex I don’t think it gives good enough evidence to make a decision. (C3) The BOSA seemed helpful for confirmation where the decision is reasonably clear from history/referral etc, but did not seem as helpful for making a decision for the children where the outcome is less clear. (C8) BOSA was useful on a few occasions for children who are selectively mute (particularly if a one way mirror can be used). (C8)

Two clinicians mentioned the BOSA could be useful to continue to be used for specific cases even after COVID-19 restrictions are removed.

Straight forward cases where a child observation is still an important part of assessment (C3) Not routinely but in particular circumstances e.g. as an option for children with selective mutism or if there is a particular reason to want an observation of parent/child interaction (C8)

Time Efficiency: Clinicians’ opinions varied when it came to the time efficiency of the BOSA. Although two clinicians mentioned the BOSA is a shorter and more time effective compared to the ADOS-2, this view was not shared by others. Some clinicians felt the lack of useful information gathered during the BOSA caused additional time to be spent getting information from other sources to make a diagnostic decision, thus reducing the efficiency of the BOSA.

BOSA is very brief and is much more time effective (C1) Allow efficiency in clinic, allow us to see more patients (C4) I don’t think the BOSA is much quicker than the ADOS when it comes to scoring and generating a report. (C3) …this can lead to more time either chasing for further information or later bringing in for an ADOS. (C8)

Other clinicians expressed that the BOSA is too short for some children to feel comfortable or too short to spot repetitive behaviours, which perhaps would be observed naturally over a longer time period.

If BOSA actually administered in timeframe suggested, it is very short - a snapshot of interaction. but for some higher functioning kids with ASD it takes some time for the subtle difficulties to become more apparent, eg girl masking and the repetitive interests only appear over time in conversation (C10) Not long enough for the child to warm up for anxious/ nervous children (C9)

Materials, Content and Information Gathering: Four clinicians specifically mentioned their preference for the BOSA materials compared to those in the ADOS.

I really like the BOSA toys, so much more engaging than awful out of date ADOS toys and games. (C1) I think that the BOSA toys are more fun and often more age appropriate than the ADOS ones. (C5) Better toys and games (C9) I think using the BOSA materials for some of the ADOS tasks would be useful. (C10)

However, some clinicians believe the BOSA does not create enough opportunities for the child to demonstrate their level of understanding emotions and relationships or their ability to initiate social interaction.

I found the BOSA had few elements that allowed you to consider imagination and this was limiting compared to the ADOS (C3) Bosa misses the more comprehensive understanding of emotions and relationships given by ADOS (C4) It [the BOSA] is fun and more relaxing than the ADOS, but does not give opportunity to see how a child initiates interactions or seeks information. (C7)

Using Face Masks: Some clinicians brought up their opinions on the BOSA compared to conducting ADOS-2 using face masks. Of the four clinicians that mentioned using face masks, three were in favour of using the ADOS-2 with face masks over the BOSA. Although the ADOS-2 is not valid when using face masks, it is understandable that clinicians would prefer the more familiar assessment tools over the brand new BOSA, that is too not yet a validated tool.

Kids are so used to masks that an ADOS wearing a mask is good. (C6) in my opinion the ADOS (wearing a mask) seems to give more information than the equivalent BOSA module (C8) Of the children we have brought back in for an ADOS (with face mask) following BOSA almost all seem to be diagnosed with ASD…this highlights that the use of BOSA during the pandemic has led to delayed diagnosis for some children. (C8) I do not think wearing a face mask impacts very much on the information we can get from an ADOS (which I feel is more than a BOSA) and I feel more confident making diagnostic decisions based on ADOS observation. (C10) ADOS in face mask is not valid, I am not sure why we are doing these but my colleagues feel it is superior still to the BOSA. (C1)

In response to COVID-19 and mandatory regulations, the BOSA was rapidly developed to enable ASD assessments to continue safely. Due to some COVID-19 policies still being implemented within healthcare settings, the BOSA continues to be used by clinicians. Although the BOSA has been developed based on standardised activities from two well-validated assessments (the BOSCC and ADOS-2), the BOSA has not been validated itself (and at present no empirically derived cut-offs are available), thus caution should be taken when using the BOSA as a diagnostic tool (Lord et al., 2020 ; Rynkiewicz et al., 2020 ).

This project aimed to evaluate clinicians’ perceptions of how helpful the BOSA is for ASD diagnostic decision making in a community paediatrics team and clinicians wider opinions on the strengths and limitations of the BOSA. Two major themes developed from data: Administration of the BOSA and the usefulness of the BOSA.

Firstly, it is important to highlight that the clinicians recruited for this study were very familiar with the ADOS-2 (half of clinicians had four or more years of experience using the ADOS-2), and were only recently asked to learn, use, and evaluate the BOSA. It is plausible that the opinions in favour of the ADOS-2 are biased due to their knowledge and expertise of using the tool. However, despite this it is worth noting that clinicians had positive reactions to aspects of the BOSA, and these findings should not be undervalued. The results are discussed to highlight useful aspects of the BOSA and what may be missing from other ASD assessment tools such as the ADOS-2. Overall, the findings show mixed attitudes towards using the BOSA. One thing that is clear, is 92% of clinicians believe a standard ADOS-2 (without face masks) is more helpful for diagnostic decision making compared to the BOSA. This was an unsurprising result due to the ADOS-2 being a validated and reliable assessment tool which all clinicians had high familiarity with. A mixed opinion was found on the usefulness of an ADOS-2 using face masks compared to a BOSA, however the three clinicians that found the BOSA to be more helpful for diagnostic decisions compared to an ADOS-2 using face masks were in the minority. It is worth noting that an ADOS-2 with face masks is not standardised nor validated, and therefore cannot be scored accurately. Although the BOSA was created to fill the gap left by not being able to carry out a valid ADOS-2, it too is not a standardised, validated ASD assessment tool. In fact, Lord et al., ( 2020 ) encourage clinicians to rely heavily on a thorough developmental history, medical background, and parent report of symptoms due to the limitations and potential inaccuracy of the BOSA. Caution must be taken when using the BOSA to inform diagnostic decisions. Other telehealth ASD assessments which as validated may need to be considered such as the NODA or CARS-2.

When discussing the time efficiency of the BOSA, clinician opinions were mixed. The clinicians in this study highlighted that although the BOSA takes a short time to administrate, the inadequacy of the information gathered causes a greater demand on resources after the BOSA as clinicians are forced to acquire further information from other sources. This causes a delay for the children in receiving their diagnostic decision, but also increases the demand on resources in an already stretched service (NHS England, 2019 ). However, clinicians did acknowledge that for more straightforward cases, i.e., when a clear developmental history has been taken and ASD appears to be presenting from this, the BOSA can be more time efficient than the ADOS-2 and is helpful for confirming a diagnostic decision. If there are identifiable straightforward referrals that come into the service, completing a BOSA could speed up the diagnostic process, benefiting service resources and service users.

One of the main criticisms of the BOSA is that the brevity of the assessment reduces opportunities to observe certain behaviours and thus the likelihood for false negatives in diagnostic outcomes may be increased (Lord et al., 2020 ). Of course, a false negative ASD outcome can have a detrimental impact on children. If falsely given no diagnosis, children will not receive the adequate clinical and education support they may require and place responsibility for this entirely on parents (Charman & Gotham, 2013 ). Moreover, these missed diagnoses may cause individuals to seek help elsewhere for their difficulties, believing they may be due to anxiety or depression and thus further increase demands on mental health services (Aggarwal & Angus, 2015 ). Services must take this into consideration when deciding whether to continue to use the BOSA.

Furthermore, the validity and usefulness of the BOSA for clinicians appeared to be determined by the level of parental administration. For various reasons, the parent administration of the BOSA was highlighted by many clinicians as a barrier to gathering enough information for diagnostic decisions. So much so that one clinician mentioned that at times they had to actively get involved in the BOSA due to parents struggling to administrate effectively. Inability for parents to administrate the BOSA to a high enough standard ultimately invalidates the BOSA, making it harder for clinicians to assess the child’s social skills and behaviour, and thus further assessments may need to be completed to confirm diagnostic decisions. This then delays the children and their family from receiving an outcome. The longer it takes children and their family to receive a diagnostic decision the more parental stress increases, overall dissatisfaction of the diagnostic process increases and the longer it takes for children and families to receive appropriate support (Crane et al., 2016 ; Howlin & Moore, 1997 ; Mori et al., 2009 ). Delays in diagnostic outcomes also have a detrimental impact on the service. With one assessment taking on average 15 h of professionals’ time and costing £931 (Male et al., 2020 ), delays in outcomes will only take up more professionals’ time and ultimately cost the healthcare system more. This again is something to consider when services discuss the future of the BOSA or the potential use of alternative telehealth methods. Other virtual assessment tools such as the CARS-2 and TELE-ASD-PEDS are, like the BOSA, short to administrate, however the time efficiency overall when compared to the ADOS is unknown.

Some clinicians suggested the BOSA could be administrated by clinicians to address the barriers that parental administration can cause. This may increase the quality of information gathered and thus enhance the usefulness of the BOSA for diagnostic decision making. This may be an option if social distancing is no longer necessary, but some COVID-19 restrictions still apply (e.g., face masks), but if all restrictions have been lifted the standardised ADOS-2 can continue to be used.

Nevertheless, clinicians positively highlighted the opportunities that the BOSA creates to observe parent–child interaction. These observations allowed clinicians to gain insight into a wide range of parent behaviours (i.e., from high scaffolding to difficulties interacting) that could perhaps inform future support or interventions. For example, educating parents on how to adapt scaffolding in order to build their child’s social skills, or perhaps focusing on the parents’ own communication and interaction skills. Furthermore, observing parent–child interaction may be beneficial for clinicians to understand what a child finds most helpful and responds to best, to consider how this could be transferred into other settings, such as school. As well as the BOSA, other telehealth ASD assessments such as the NODA, CARS, TELE-ASD-PEDS and A-VABO also allow parent–child interactions to be observed if captured in the video content created by the family or during the videoconference. However, parent–child interaction is not something which the ADOS-2 accommodates, thus this useful information can be missed when using the assessment.

Clinicians also shared their preference for the BOSA toys and games compared to the ones used in the ADOS-2. However, some clinicians did mention the BOSA materials do not create opportunities to gather information about the children’s communication skills and understanding of social concepts, and so evidence for diagnostic decisions can be missed. This links to the potential risk of false negatives when using the BOSA (Lord et al., 2020 ).

Many clinicians thought the BOSA could be advantageous in specific cases, for example, children who are selectively mute. Over 60% of children diagnosed with selective mutism also have an ASD diagnosis (Cengher et al., 2021 ). In these cases, a parent administrated BOSA may allow clinicians to observe the child interact and communicate more than they would with an unfamiliar clinician during an ADOS-2.

The researchers acknowledge that this study does not come without its limitations. Firstly, the use of an online survey, as opposed to face to face or virtual interviews. Although the online survey was a more feasible method due to time restraints, it is plausible that interviewing participants would have collected more data and thus strengthened the findings of this study. Additionally, recruiting more clinicians may have improved the quality of this study. It must be noted that the conclusions of this study are based on a small number of clinicians’ opinions from a single service, and thus it is advised that future research explores this further.

Another limitation of the study is the use of two questions to ask clinicians to directly compare the usefulness of the ADOS-2 and the BOSA. In hindsight, the clinicians’ high familiarity with the ADOS-2 biases opinions when comparing it with a tool they have had minimal experience using. Furthermore, the BOSA is not yet a validated or standardised tool, thus it is inevitable that the ADOS-2 would be preferred by clinicians. Nevertheless, the finding that despite this some clinicians highlighted relative strengths of the BOSA compared to the ADOS-2 is a valuable finding.

Finally, this study did not complete any respondent validation. Again, this was not feasible due to time restraints of both researchers and clinicians. Future research should consider replicating this study in a larger service or across multiple ASD assessment services to explore clinician opinions on the BOSA further.

Conclusions

Overall, the findings highlight some useful and beneficial aspects of using the BOSA. Clinicians expressed the usefulness of observing parent–child interactions during the BOSA, something that they are unable to observe when using the ADOS-2. Clinicians also noted that the BOSA can be more beneficial for certain cases such as selective mutism due to parental administration, rather than assessments which must be administered by a trained clinician.

The clinicians in this study showed a clear preference for the familiar ADOS-2 over the BOSA, even for using face masks during an ADOS-2. Both the BOSA and ADOS-2 with face masks must be used cautiously for diagnostic decision making, and clinicians should rely more on additional information from developmental history and parent/school report of symptoms than they may have done prior to COVID-19.

Clinicians should be wary of the risks of false negatives due to the brevity of the BOSA if it continues to be used. Future use of the BOSA may be beneficial for both children and services in certain circumstances, although it is evident that the BOSA should be properly validated if services rely on it for diagnostic decisions in these cases.

This study contributes to a growing body of literature on the BOSA and alternative ASD assessments used during and after the COVID-19 pandemic.

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All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Sophie Shapter and Kate Roberts. The first draft of the manuscript was written by Sophie Shapter and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

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Appendix A Clinician Questionnaire

Bosa questionnaire.

1. How many years have you been ADOS trained?

2. How many BOSA have you administrated?

3. Doing a BOSA increases my confidence in the decision to diagnose/not diagnose ASD.

4. Doing a BOSA has changed my opinion around whether criteria for an ASD diagnosis has been met or not.

5. Compared to a standard ADOS, I believe a BOSA is usually:

6. Compared to an ADOS wearing a face mask, I believe a BOSA is usually:

7. The overall ASD assessment process is more time efficient using a BOSA compared to the ADOS.

8. Please tell us more about your opinions of the BOSA. It may be helpful to consider:

When you are unable to make a diagnostic decision from a BOSA, what information you feel you are missing?

Any opportunities the BOSA gives you to collect further information that you can’t get from other methods

Any factors you feel impact on how helpful a BOSA is?

9. (a) If all COVID-19 restrictions were removed, are there times when you believe it would still be helpful to use the BOSA?

(b) If you clicked “yes”, when do you feel a BOSA could still be useful:

10. Do you have any other comments about the BOSA?

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Shapter, S., Carroll, A. & Roberts, K. Clinician Opinions Regarding the Usefulness of the BOSA for ASD Assessment in a Service for Children Aged Under 12 Years. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-023-06207-z

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Accepted : 25 November 2023

Published : 02 April 2024

DOI : https://doi.org/10.1007/s10803-023-06207-z

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• Published: 04 April 2024

Compromised values: a comparative response during the COVID-19 crisis by ethical vegans and vegetarians

• Estela M. Díaz 1 ,
• Núria Almiron 2 &
• Olatz Aranceta-Reboredo 2  

Humanities and Social Sciences Communications volume  11 , Article number:  485 ( 2024 ) Cite this article

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• Cultural and media studies

Animal advocacy is a complex phenomenon. As a social movement encompassing diverse moral stances and lifestyle choices, veganism and vegetarianism (veg*) are at its core, and animal testing raises as a notably contentious issue within its members. This paper addresses this critical topic. Employing data from an international quantitative survey conducted between June and July 2021, our research explores how ethical vegans and vegetarians responded during the COVID-19 crisis. By comparing the experiences and choices between the two groups, we aimed to understand the variances in attitudes and behaviors in the face of an ethical dilemma, highlighting the interplay between personal beliefs and social pressures in times of a health crisis. Our findings reveal stark contrasts in how vegans and vegetarians navigated the pandemic; vegans displayed less conformity yet experienced a significant compromise of their ethical values, particularly in their overwhelming acceptance of vaccination. This study enhances the field of veg* research and social movement studies by exploring how a social crisis shapes members’ behaviors and perspectives. Our findings also contribute to a better understanding of the challenges and prejudices that a minority group such as vegans may face and how they cope with the pressure to go against the mainstream at a time when society is polarized by a single discourse that goes against their moral values.

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Introduction

The enduring concern of animal experimentation sits at the heart of the animal defense movement, propelled by the humanitarian ethos established in the 19th century and the principles of anti-speciesism that emerged in the 20th century. At the same time, within the spectrum of animal advocacy, animal testing is one of the most contentious issues due to the scarcity of viable non-animal alternatives for drug testing and the broad spectrum of stances within the movement. These range from advocating for the outright abolition of animal testing to endorsing its restricted use under specific circumstances (Díaz, 2016 ; Newton, 2013 ). Animal testing intersects with a deeply personal and critical issue: human health.

The COVID-19 crisis, with its heavy reliance on preventive pharmacological interventions developed through animal testing, posed a profound ethical conundrum for animal advocates. Confronted with this unprecedented challenge, we conducted an exploratory study investigating how animal advocates navigated this situation. To capture and picture their perspectives during the COVID-19 2020–2021 period, we conducted an international quantitative study of self-identified vegans and vegetarians (hereafter also referred to as veg*), focusing primarily on their reactions to the mass vaccination drive—the only pharmacological measure against the crisis. We chose these two groups because of the inherent challenge of engaging with a diverse, dynamic, and evolving community. This choice aimed to encompass a breadth of animal advocates whose ethical stances might have been tested by the crisis. Moreover, contrasting these two communities provided a valuable comparative analysis, shedding light on the intricacies within the current animal defense movement.

Since the development of COVID-19 vaccines required animal testing by law, it left no compassionate alternatives that respected the interests of animals (Pruski, 2021 ). Simultaneously, massive media coverage following authorities and governmental organizations was deployed on the situation and measures (Krawczyk et al., 2021 ). In this context, it was reasonable to think that members of the veg* community, especially vegans, were at an ethical crossroads for facing the potential moral dilemma of choosing between safeguarding animals and protecting humanity.

This study offers a nuanced exploration of the moral quandaries confronted by the vegan and vegetarian community during a worldwide health crisis. Moreover, it illuminates the broader question of moral decision-making within groups whose values deviate from the mainstream, revealing the intricate interplay among personal convictions, societal pressures, and ethical considerations in times of unparalleled challenge.

Before presenting our findings, we will first delineate the distinctions between vegetarianism and veganism, focusing mainly on their stances regarding animal testing, describing the role of animal experimentation in the COVID-19 solution, and the social and media pressure during the period. Subsequently, we elaborate on our methodological approach. The article concludes with a discussion of our findings, exploring the broader implications of the COVID-19 crisis for the vegetarian and vegan communities.

Vegetarian and vegan views on animal testing

Contemporary vegetarianism has served as an umbrella term encompassing a variety of philosophical stances and dietary practices, each delineating varying degrees of animal product exclusion. This broad category encompasses those who identify as vegetarians yet engage in occasional meat consumption, as well as pescatarians and diverse classifications of ovo-lacto-vegetarians (Beardsworth and Keil, 1991 ; Beardsworth and Bryman, 1999 ; Jabs et al., 2000 ; Janda and Trocchia, 2001 ). However, the most holistic form of vegetarianism is “veganism,” sometimes referred to as authentic or proper vegetarianism (Willetts, 1997 , p. 117) or strict vegetarianism (Rothgerber, 2014a ). Introduced in 1944, the term veganism was initially intended to be distinguished from vegetarianism to cover a broader ethical philosophy that advocates living without harming, exploiting, or using nonhuman animals in any way (Díaz and Horta, 2020 ; The Vegan Society, 2022 ).

The literature has often confused vegetarianism with veganism without distinguishing between these distinct philosophies and lifestyles. However, their distinct identity is now increasingly recognized and supported by both theoretical and empirical research, highlighting the need for nuanced investigation of these separate phenomena (Kalof et al., 1999 ; Knight et al., 2004 ; Meng, 2009 ; Okamoto, 2001 ; Pribis et al., 2010 ; Povey et al., 2001 ; Rothgerber, 2014a ). In addition, previous studies have highlighted the importance of paying attention to the underlying motivations that drive individuals towards these choices when studying veg* communities.

Both vegetarianism and veganism can be adopted for a variety of reasons. Traditionally, vegetarianism has been associated with health and personal well-being, and contemporary research supports that health remains one of the main reasons for its adoption (Fox and Ward, 2008 ; Hargreaves et al., 2021 ; Hopwood et al., 2020 ; Salehi et al., 2023 ). As for veganism, although a significant and growing number of people are adopting vegan dietary practices because of health benefits and, to a lesser extent, environmental concerns (Giraud, 2021 ; Janssen et al., 2016 ; Oliver, 2023 ; Peggs, 2020 ), its origin and practice are deeply rooted in animal rights and anti-speciesism movements (e.g., Díaz and Horta, 2020 ; Ploll and Stern, 2020 ). These fundamental tenets of “ethical veganism” bring animal advocacy to the forefront (BBC, 2020 ; Diaz, 2016 , 2017a , 2017b ; Panizza, 2020 ; Ruby, 2012 ) and have given way to what is now also known as “political veganism,” a stance that actively challenges “the routine harms created by social structures and systems […]; and which is conceived as a form of collective activism” (Cochrane and Cojocaru, 2022 , p. 60; Kalte, 2020 ). It is also argued that veganism aligns with social justice principles, often associated with progressive or left-wing ideologies (Díaz, 2012 , 2018 ; Dickstein et al., 2022 ). In the literature, it is crucial to distinguish between “ethical” vegetarians and vegans—who prioritize animal welfare and animal rights—and other figures, such as the “health conscious”, who are primarily guided by personal health benefits (Rozin et al., 1997 ).

Agreeing on definitive descriptions for veganism and vegetarianism presents its challenges. Despite this, it is widely acknowledged that both communities are united by shared moral values; most notably, a concern for animal welfare that varies in degree (Lund et al., 2016 ). These shared values have faced challenges, particularly when intersecting with health concerns, as seen during the Covid-19 crisis. The comparative analysis of the vegan and vegetarian communities enhances our understanding of the animal advocacy movement. This comparison becomes especially crucial in the context of animal experimentation, illuminating the process of moral decision-making in situations that test people’s foundational values. While vegetarians may have diverse views on animal experimentation, it is not a defining characteristic of the vegetarian ethic as defined by the Vegetarian Society ( https://vegsoc.org/lifestyle/ ). Vegetarians tend to adopt a “usoanimalistic” approach, focusing primarily on dietary choices (Díaz, 2017b ). In contrast, veganism encompasses a broader ethical commitment that goes beyond dietary choices and rejects all forms of animal use—including in products and services—with animal testing being a defining concern within vegan ethics (The Vegan Society, 2022 ; Díaz, 2017b ).

Animal experimentation is a very sensitive and controversial issue in society in general and, especially, in the veg* community Footnote 1 (Greenebaum, 2012 ; Pruski, 2021 ). There is a lack of literature comparing vegans and vegetarians in terms of their concerns about animal testing, but some research has already suggested a significant difference. For instance, vegans surveyed by Ploll and Stern ( 2020 , p. 3259) self-reported a statistically higher level of animal-friendly behavior than vegetarians (and all other respondents) about animal testing and animal-based ingredients in their consumption of cosmetics. On the other hand, Miguel ( 2021 ) has shown that the UK Vegan Society’s labeling is stricter for products tested on animals than for food, confirming the differential nature of veganism in this respect.

Other empirical studies have provided evidence to support notable discrepancies between vegans and vegetarians that may impact how they perceive animal experimentation. For instance, research indicates that vegans harbor more favorable attitudes towards animals, perceive a more significant similarity between humans and other species, and attribute a broader range of emotional and cognitive capacities to nonhuman animals compared to vegetarians (e.g., Filippi et al., 2010 ; Rothgerber, 2014a ). Furthermore, vegans tend to express stronger condemnation of animal killing and experience higher guilt associated with such practices when juxtaposed with vegetarians (Ruby and Heine, 2011 ). Regarding emotional responses, vegans show elevated levels of disgust and sensitivity towards the consumption of animals, along with greater empathy for animal suffering (Rothgerber, 2014b ; Rothgerber, 2015 ). Lastly, veganism is usually associated with a greater emphasis on nonhuman animal advocacy (Hoffman et al., 2013 ; Piazza et al., 2015 ).

Animal experimentation and discrimination in COVID-19

More than 192.1 million nonhuman animals are used in research worldwide every year on average, according to estimations (“Facts and Figures on Animal Testing”, n.d. ). However, the exact number is unknown due to the lack of transparency by both regulators and experimenters. Mice, rats, and other rodents are used the most, yet many other species—such as cats, dogs, horses, birds, pigs, fishes, sheeps Footnote 2 , goats, reptiles, and nonhuman primates—are also used in experiments devised by scientists and approved by public and private scientific committees under strict rules of confidentiality. In these experiments, nonhumans are used in several types of research. Among the most common are basic research (e.g., genetics, developmental biology, behavioral studies), applied research (e.g., biomedical research, xenotransplantation), drug and toxicology testing, education research (mainly at universities), breeding research (genetic selection), and defense research (by governments and the military). Details of the practices to which they are subjected (e.g., smoke inhalation, ingestion of chemicals, infection with disease, brain damage) are often kept secret from the public, who are increasingly sensitive to cruelty to animals. However, occasionally, information about research involving animals that humans are fonder of—such as dogs and cats—and leaks of malpractice reach the media (e.g., Kassam and Grover, 2021 ).

At least since Ancient Greece, animal research has been used for scientific and medical purposes (Guerrini, 2022 ). However, controversy about the efficacy of animals as research models for human medicine is high at present, with strong evidence showing very poor results from the animal model due to methodological, scientific, and technical problems (Akhtar, 2012a , 2012b , 2015 ; Herrmann and Jayne, 2019 ; Knight, 2011 ; Leyton, 2019 ) Footnote 3 . Despite this, animal experimentation is currently compulsory worldwide by law or de facto for drugs and toxicology, being authorized by regulators before any human test is conducted and launched into the market (Knight, 2011 ; Leyton, 2019 ) Footnote 4 .

Animal testing has particularly been a critical component of vaccine development. Since Jenner, at the end of the 18th century, animals have been used as potential models for human infectious diseases (Gerdts et al., 2007 ). Mainly since Pasteur, during the 19th century, animal pathogens have been used attenuated or as vectors in vaccines, and researchers have been experimenting with the transmission of different pathogens to different animal species and between individuals of different animal species. In addition, most vaccines have been developed using small animals like rodents as test subjects—so-called “‘models” by the industry, animals that the industry makes sick to test drugs on them. However, studying and testing on larger animals, including calves, horses, sheep, pigs, guinea pigs, and nonhuman primates, has also become common. Sometimes, their body parts or body fluids are used for scientific purposes. For instance, for the last 70 years, the most common way of manufacturing flu vaccines has used hens’ eggs (“How Flu Vaccines are Made”, n.a. ).

The technology most used for COVID-19 inoculations (messenger RNA-based, or mRNA) does not use attenuated pathogens anymore, but animal experimentation has also played an important role in these drugs. The mRNA technology has been researched in laboratories since at least 1990, including nonhuman animals in the different stages of research (Pardi et al., 2018 ). Scientists also conducted specific animal tests with, at least mice and nonhuman primates in the preclinical phase of the specific preparations marketed for COVID-19 (NIAID Now, 2021 ). Therefore, even if the animal trials for the COVID-19 mRNA vaccines were faster than usual (because there were no long-term studies) and thus fewer animals were used for shorter periods, these drugs still involved the testing and killing of a considerable number of small and large animals over more than two decades.

Some authors point out that this crisis has brought some (apparently) positive results for animals; for example, the increase in the number of “companion animal” guardians, mainly to alleviate social isolation measures during this crisis (with some associated market booms) (see on this van Wyk, 2022 ). However, the period has also brought an escalation of prejudice, neglect, abuse, and the killing of animals, along with an increase in speciesism, which undoubtedly challenges vegan values. For instance, the COVID-19 crisis involved the mistreatment of animals in ways other than experimentation that are likely to concern vegans and animal rights advocates; amongst the most important is the augmented prejudice raised against some free-living animals (Bittel, 2020 ), “companion” animals (Zhang et al., 2020 ; Berry, 2020 ; Feng, 2021 ), captive animals (Haworth, 2020 ), or farmed animals (Kesslen, 2020 ).

Veg* philosophies and lifestyles are increasingly common in Western societies, but people who embrace them remain a source of stigma (Rosenfeld and Tomiyama, 2020 ; Vandermoere et al., 2019 ). As MacInnis and Hodson ( 2017 ) point out, it is paradoxical that vegetarians and vegans become the subject target of bias or prejudice even though they do less harm to animals and the environment. Veg* individuals are seen as “symbolic threats”, understood as “intangible threats to an ingroup’s beliefs, values, attitudes, or moral standards” (p. 724). Furthermore, research on perceptions of the veg* community by the non-veg* community shows that vegans experience more prejudice and discrimination than vegetarians (MacInnis and Hodson, 2017 ; Judge and Wilson, 2019 ). The media often contributes to exacerbating this view. For example, Cole and Morgan ( 2011 ), who studied the representation of veganism in UK newspapers, found that veganism was portrayed as “contrary to common sense” because it fell outside the dominant discourses on animal exploitation. Not only did the newspapers tend to discredit veganism, but vegans were also stereotyped as “ascetics, faddists, sentimentalists, or in some cases, hostile extremists” (p. 134). The authors refer to this pejorative discourse as “vegaphobia”: a cultural reproduction of speciesism that helps mask and perpetuate the exploitation of nonhuman animals while marginalizing veganism and vegans (Cole, 2015 ). From a philosophical stance, Horta ( 2018 ) has also labeled the bias against vegans as an unjustified “second-order discrimination, that is, discrimination against those who oppose another (first-order) form of discrimination” (p. 1).

This backdrop of misunderstanding and hostility towards the veg* individuals set the stage for the challenges presented during the COVID-19 crisis. General vaccination coverage varied widely from 62% to 82% (proportion of people with a complete initial protocol) (Our World in Data, n.d. ). However, specific data on vegan vaccination rates—globally or by country—is notably absent, which leaves a gap in our understanding of how this community navigated the pandemic’s unique ethical landscape. During our studied 2020–2021 period, the moral dilemma posed by animal-tested COVID-19 vaccines framed the veg* community within a complex media narrative by subjecting their choices to intense scrutiny within broader public health discourse and highlighting an ethical quandary more acute for vegans than for vegetarians. Vegans are often depicted as grappling with the moral implications of receiving vaccines tested on animals. They are frequently mentioned in this context and sometimes portrayed in a pejorative light, with descriptors such as “dogmatic,” “ultra-pedantic,” and “no different than a blindly partisan Trump follower who would rather harm their country than lose a political fight” (Catalunya Press, 2021 ; Bramble, 2021 ; Herzog, 2022 ; Sun, 2021 ).

Nevertheless, public discourse from vegans primarily reflects a neutral or pro-vaccination stance (Sainz, 2021 ; De la Paz, 2021 ; Turner, 2021 ). Influential figures within the vegan community have promoted vaccination, often sharing their own vaccination experiences on social media (Nelson, 2022 ) and participating in advocacy campaigns (Esselstyn Family Foundation, 2021 ). At the same time, many dissenting opinions received no media coverage, as in the case of the summit of critical vegans discussing vaccination (Worldwide Vegan Summit for Truth and Freedom, 2022 ), whereas individual vegans supporting vaccination (Francione, 2020 ; Singer, 2021 ) were given visibility in the media worldwide. For instance, Singer ( 2021 ) did not refer to the cost of the vaccine to animals and asserted that the COVID-19 vaccine should be mandatory. In this context, some vegetarians requested vegans to make an exception and avoid “extremism” (e.g., Bramble, 2021 ; Davis, 2021 ; Enerio, 2021 ; Sun, 2021 ). This public pressure on vegans was intensified with the publicized statements of key vegan organizations, such as PETA (Sachkova, 2021 ), Animal Aid (“COVID-19 Vaccines and Veganism”, 2021 ), and The Vegan Society (“Vegan Society response to COVID-19 vaccine”, 2020 ); PETA explicitly recommended vegans to get vaccinated to preserve the health of others and their own health to continue defending animals, and the same idea is evident in the Vegan Society’s official statement on the COVID-19 vaccine.

This context provides fertile ground for academic inquiry. As far as the authors know, only a few studies on veganism and COVID-19 have been published to date. Most of these studies have focused on examining consumption trends and perceptions of veganism (Loh et al., 2021 ; Park and Kim, 2022 ; You, 2020 ; Tumanyan, 2021 ) or vegan food and products (Dinh and Siegfried, 2023 ; Lee and Kwon, 2022 ). On the other hand, Pruski ( 2021 ), a clinical scientist, recalls the legitimate safety and conscience concerns about vaccination and cites vegans as an example of a morally committed community that does not agree with animal testing. However, none of these studies specifically address attitudes, experiences, and opinions or focus on animal testing. Similarly, none of these studies examine possible differences between vegans and vegetarians about vaccination and other measures taken during the COVID-19 crisis.

The current study

This study delves into the intricate moral conundrum ethical vegans and ethical vegetarians (hereafter, vegans and vegetarians) faced during the COVID-19 crisis. By comparing the experiences and choices between the two groups, we aim to understand the variances in attitudes and behaviors in the face of a global ethical dilemma, highlighting the interplay between personal beliefs and social pressures in times of a health crisis. Specifically, the study focuses on analyzing possible differences between self-proclaimed vegans and vegetarians on (1) attitudes and behavior towards vaccination; (2) attitudes towards COVID-19 Certificate, also known as “the Green Certificate” or “the Green Passport”, as proof of vaccination to facilitate free movement between countries; (3) the level of trust towards different groups about decisions made regarding COVID-19; (4) the sources of information used to learn about COVID-19; (5) the perceived level of censorship of information about COVID-19; and (6) the level of stress encountered during 2020 and 2021. In addition, we studied the extent to which being vegan or vegetarian, and the factors mentioned above affected the uptake of the COVID-19 vaccine.

Our starting point was that vegans and vegetarians might exhibit different attitudes and behaviors toward various COVID-19-related issues based on distinctions identified in existing literature. Particularly concerning COVID-19 vaccination, which involved animal testing, we hypothesized a significant divergence in acceptance rates between vegans and vegetarians, with the former being less likely to accept vaccination. Additionally, we anticipated potential disparities between the two groups regarding their trust in social actors (such as the media), their choice of information sources, and their perceptions of information censorship during the pandemic. These expectations stem from the perception of veganism as the “most radical” stance within the veg* community and its minority status in a predominantly non-vegan society. It stands to reason that vegans might exhibit more skepticism, critique, or detachment from conventional information channels and societal institutions. However, we do not formulate specific hypotheses on these aspects—or the level of stress suffered by the two groups—given the unprecedented nature of the COVID-19 crisis and the paucity of research in this area.

Questionnaire

The study used a structured, non-randomized online survey available in English or Spanish. Data were collected between June and July 2021. In addition to sociodemographic data (age, gender, country of residence, educational level, employment status, and political ideology), the survey included questions related to the following issues:

Lifestyle/philosophy of life : Participants were asked to indicate which option seemed most appropriate to describe their current lifestyle/philosophy: vegan, vegetarian, ovo-vegetarian, lacto-vegetarian, ovo-lacto vegetarian, flexitarian, pescatarian, plant-based diet, or others (presented as an open question).

Motivations for maintaining the lifestyle/philosophy of life : On a 5-point Likert scale, participants rated the relevance of the following motivations to maintaining their veg* lifestyle/philosophy of life: animal defense, environment, health, beauty, climate change, personal circle, spirituality, religion, and disgust.

Rejection and acceptance of animal use : Participants rated their acceptance of the use of animals in experimentation, food, entertainment, and fashion using a 5-point Likert scale, ranging from “Strongly disagree” to “Strongly agree”. The variable was also used to determine the differential stance between vegans and vegetarians on the use of animals, with a particular focus on experimentation.

COVID-19 : This section covered a variety of questions related to vaccination: doses received, motivations, opinions on mandatory vaccination, and possession of a COVID-19 passport (hereafter referred to as a green passport). The types of questions varied: some were dichotomous (e.g., “Have you received the COVID-19 vaccine? 1. no; 2. yes”), others offered multiple choices (e.g., “I have not been vaccinated …. 1. but I plan to do it as soon as possible”). Some questions allowed for multiple responses, with an open question (e.g., “If vaccinated, the main reasons are…: own health protection”). For some questions, a 5-point Likert scale was used (e.g., “Please rate your agreement with the statement: “COVID-19 vaccination should be compulsory for all citizens”, where 1 means “strongly disagree” and 5 means “strongly agree”).

Trust: We measured participants’ trust in different social actors during COVID-19 using a single 5-point Likert scale question: “Please rate your confidence that the following institutions will perform adequately during COVID-19”. There were eight categories: “Intergovernmental Institutions (WHO, agencies, etc.)”; “Government Institutions (state, federal, local, etc.)”; “Media”; “Pharmaceutical companies”; “Non-pharmaceutical companies”; “NGOs”; “Scientists”; “Healthcare professionals”. This question was designed according to the Trust Barometer methodology used globally by the independent communications firm Edelman Trust Institute (2021) for the past two decades.

Source of information: We measured this variable with two 5-point Likert scale questions, one on general topics and one on COVID-19: “How often do you use the listed sources to get general news?” And “How often have you used the listed sources to get updates related to COVID-19 (developments, vaccines, etc.)?”. Sources of information included: “Traditional media (both print and digital associated with large media groups)”; “Alternative media (both print and digital not associated with large media groups)”; “Social networks (Facebook, Twitter, YouTube, etc.)”; “Private chats (WhatsApp, Telegram, etc.)”; “Personal networks (family, friends, etc.)”; “Experts (sociologists, psychologists, political scientists, doctors, philosophers, etc.)”; and “Other.”

Stress: We asked participants to evaluate in two 5-point Likert scale questions the level of stress they suffered, respectively, during 2020 and at the time of responding to the questionnaire, 2021.

Procedure and sample

The online survey, hosted on the website [details omitted for double-anonymized peer review] and administered through EncuestaFacil.com, was disseminated through vegetarian communities (e.g., animal protection groups), social networks (e.g., Twitter, Facebook, Instagram, Reddit) and the researchers’ networks. We also used snowball sampling, asking participants to distribute the survey among their veg* contacts. The resulting data were analyzed for missing entries, outliers, and errors, and problematic data were excluded. As a result of this analysis, the initial sample of 1073 individuals was reduced to 936 persons. Of this sub-sample, 66% declared themselves vegans, 27% vegetarians (ovo-vegetarians, lacto-vegetarians, and ovo-lacto-vegetarians), 3% pescatarians, 2% plant-based diet, and 2% flexitarians. However, the final sample used for the analysis in this study consisted of 853 individuals as a result of applying two selection steps. First, flexitarians, pescatarians, and plant-based were excluded; the first two figures include animal consumption, and the last one remains ambiguous in the literature. Secondly, the analysis was specifically tailored to focus on individuals committed to veganism or vegetarianism for ethical reasons. Consequently, participants who did not identify animal protection as “important” or “very important”—using a 5-point Likert scale—as a reason for their dietary choices were excluded from the study.

Our final sample ( n  = 853) included a vegan sample of 66% ( n  = 587) and a vegetarian sample of 34% ( n  = 266). Regarding gender, 69% identified themselves as “women”, 27% as “men”, and 4% as “other”, with an average age of 36.7 years—37.6 years for vegans and 34.8 years for vegetarians. Almost all participants were highly educated. They predominantly identified with progressive, socialist, or anarchist political ideologies and supported feminist and environmentalist causes. Over half were paid-employed (see Table 1 for more detailed sample demographics). The sample boasted an international profile, with participants spanning 48 nations, primarily from Spain (53%) and the United States (15%). Notable representations also came from the United Kingdom (4%), Canada, Germany, Switzerland, Argentina (3% each), and smaller percentages (2%) from other countries, Austria, Australia, Portugal, and Mexico. Other participants came from Belgium, Colombia, Italy, India, Ireland, and the Netherlands, each representing 1%. All other nations accounted for less than 1% each. Given the strategy to collect the data, it should be noted that the results cannot be deemed statistically representative of the entire veg* community.

Analytical strategy

Due to the non-normal distribution in most cases, non-parametric tests were used in the analyses. Specifically, Spearman’s tests were used to study correlations between variables, while Chi-square and Mann–Whitney tests (with Bonferroni correction) were used to examine differences between vegan and vegetarian groups. Finally, binomial logistic regression was performed to assess the impact of the main factors studied, including vegetarianism or veganism, on vaccination decisions. Before analyzing COVID-19-related differences between vegans and vegetarians, we examined whether their views on the use of animals differed. As Table 2 indicates, both groups showed significant differences in all items, with a p  < 0.001 and an effect size ranging from low to moderate. Vegans showed a more critical attitude towards all uses of animals. Using animals in experimentation is the least rejected for both groups when comparing all the uses included in the study.

Attitudes, behavior, and reasons regarding vaccination

Differences in attitudes towards vaccination.

The descriptive analysis of participants’ attitudes towards vaccines in 2021 (the time of the survey) revealed that the majority considered the vaccine safe or very safe for humans (68%) and effective or very effective against COVID-19 (71%). When we compared the attitudes of vegans and vegetarians concerning these attributes, we found that vegans rated them more negatively (see Table 3 ). In the case of safety, 64% of vegans versus 77% of vegetarians considered it “safe” or “very safe”; in contrast, 11% of vegans and 6% of vegetarians rated it “not very” or “not at all safe”. As for the vaccine’s efficacy, 66% of vegans vs. 82% of vegetarians considered it “effective or very effective”. In comparison, 10% of vegans vs. 5% of vegetarians perceived it as “not very” or “not at all effective”. However, the Mann–Whitney U -test indicated that the only significant difference (with a p  = 0.025) was in the case of safety.

We also looked more closely at the group that chose the “don’t know enough” (DK) option about the attributes of safety (12% of the total sample) and vaccine efficacy (8% of the total sample). When comparing the two groups, we found that more vegans (13% for safety and 10% for efficacy) than vegetarians (10% and 3%, respectively) had chosen that option. However, these differences were significant for the assessment of vaccine efficacy ( χ 2 (1, N  = 68) = 12.98, p  < 0.001) but not for vaccine safety ( χ 2 (1, N  = 101) = 2.30, p  = 0.129).

When participants were asked about their views on mandatory vaccination against COVID-19, 41% of all participants agreed or strongly agreed with the measure. Comparing this attitude between the two groups, a more positive assessment was observed among vegetarians. On the one hand, 37% of vegans versus 51% of vegetarians accepted the measure (with 12% and 23%, respectively, responding “very agree”); on the other hand, 45% of vegans versus 26% of vegetarians rejected it (with 25% and 11%, respectively being “strongly disagree”). The Mann–Whitney U test confirmed these differences as statistically significant (see Table 3 ).

Regarding the possible implementation of the Green Passport, 52% of the sample considered it appropriate. Again, differences were observed when comparing the two groups: 48% of vegans and 60% of vegetarians agreed with its implementation (21% vs. 33% answered “strongly agree”); at the same time, 30% of vegans and 128% of vegetarians disagreed (19% and 11% respectively chose “strongly disagree”). The Mann–Whitney U -test confirmed that these differences were statistically significant (see Table 3 ).

We also examined the “don’t know enough” (DK) option on the Green Passport implementation. In this case, we also found that more vegans (13% and 10% for safety and effectiveness, respectively) than vegetarians (10% and 3%) chose DK. However, the difference was not significant ( χ 2 (1, N  = 74) = 1.06, p  = 0.303).

We conducted a correlation analysis to explore the relationship between the four variables. We found strong and significant correlations between them for both groups (slightly stronger among vegans) (see Table 12 in Annex ). Lastly, we also observe positive and significant correlations between the DK options. We found an association between vaccine safety and effectiveness ( rho  = 0.51, p  < 0.001) as well as Green Passport with vaccine safety ( rho  = 0.11, p  < 0.001) and effectiveness ( rho  = 0.12, p  < 0.001).

Differences in behavior toward vaccination

Of all the participants, 85% reported being vaccinated against COVID-19 at least once. However, this percentage varied significantly between the two groups, with a lower proportion among vegans (82%) than vegetarians (94%) ( χ 2 (1, N  = 853) = 21.1, p  < 0.001).

When examining the average number of doses received by participants in more detail, we found differences between the two groups (see Table 4 ). Specifically, although most respondents reported receiving two doses (73%), the percentage was significantly lower among vegans (69%) than among vegetarians (81%). We also analyzed the vaccinated individuals’ intention to receive additional booster doses (see Table 4 ). Data show that participants’ attitudes varied depending on whether they considered receiving a second, third, or subsequent dose. For instance, among those who had already received two doses, over 70% were willing to receive a third dose if necessary; however, only 3% expressed a willingness to receive a fourth dose. When comparing the two groups, we found no significant differences in the willingness to receive subsequent doses after the first shot (see Table 4 ). However, the findings regarding the number of doses received should be interpreted with caution due to potential variations in health recommendations, protocols, and vaccine brands, both between and within countries.

Among the unvaccinated (15% of the total sample), most participants reported not intending to receive any doses; this percentage was significantly higher among vegetarians. A significant difference was also observed for the option “I am still evaluating the possibility of getting vaccinated”, where the percentage was higher among vegans (see Table 5 ).

Differences in reasons for vaccination

In the total sample, three reasons appear as the most relevant for participants to be vaccinated: the feeling of “social responsibility”; “the desire to protect significant others (e.g. family, friends) as well as people in vulnerable situations”; and “the desire to safeguard their own health” (Table 6 ). It should be noted that participants could choose a maximum of three motives.

When comparing the vegan and vegetarian groups concerning these motives, we found significant differences in “protection of the significant others and vulnerable people (e.g., family, friends)” as well as in “protection of one’s health.” In both cases, the vegetarian sample indicated higher values (see Table 6 ).

To better understand the differences between the two groups in their decision-making regarding vaccination, we asked them to rate their agreement level on six questions related to vaccination, their lifestyle/philosophy, and animal welfare. As summarized in Table 7 , the data revealed significant differences in all questions. First, a higher percentage of vegans (46%) than vegetarians (21%) believed that vaccination was not coherent with their lifestyle/philosophy. Additionally, 11% of vegans and 21% of vegetarians stated that they “did not think about its coherence.” It should be noted that this variable correlated positively and significantly with the attitudes towards mandatory vaccination ( rho  = 0.40; p  < 0.001). Specifically, the less they considered the consistency of vaccination with their values, the more they supported mandatory vaccination.

Second, a higher percentage of vegans indicated that their lifestyle/philosophy had a significant influence on their vaccination decision; specifically, 12% of vegans, compared to 5% of vegetarians, stated that their veganism or vegetarianism influenced their decision quite a lot, while 50% of vegans and 70% of vegetarians responded that it did not influence their decision at all.

Third, vegans are less likely than vegetarians to accept the idea that vaccine testing on animals was done for a good cause or the common good (12% vs. 32%, respectively). Furthermore, vegans—compared to vegetarians—are more likely to recognize that vaccination involves animal suffering (80% versus 49%) and to express that they took this suffering into account in their decision-making process regarding vaccination (55% vs. 19%, respectively).

Lastly, the data revealed that a more significant proportion of vegans (4%) than vegetarians (1%) attempted to compensate for the perceived suffering associated with the COVID-19 vaccine by donating to various causes, such as sanctuaries or alternative animal testing centers ( χ 2 (1, N  = 852) = 7.82, p  = 0.005; ⌀  = 0.10).

Differences in trust, the use of sources of information, censorship, and stress during COVID-19 crisis

We also examined possible differences in four variables that could influence veg* decisions and experiences during the period: (1) the level of trust in various social actors; (2) the use of different sources of information on COVID-19-related issues; (3) the perception of information censorship during the COVID-19 crisis; and (4) the level of stress in 2020 and 2021. Tables 8 and 9 summarize the results.

As for assessing the performance of the different social actors during the COVID-19 crisis, we found that healthcare—followed by scientists—was the best rated, while the media was the worst rated by the entire sample. When comparing vegans and vegetarians in this assessment, the data show that vegetarians were significantly more positive about the decisions made by four actors that were key during the crisis: healthcare, scientists, intergovernmental institutions, and pharmaceutical companies.

Regarding the different sources of information consumed to keep up to date, the Mann–Whitney U -test revealed two significant differences between the two groups (see Table 9 ). First, vegetarians consumed significantly more information from traditional media than vegans, both for information on COVID-19 issues and world events in general. Second, vegetarians relied more on information from their close circle to keep them informed about COVID-19 issues.

Additionally, the analyses showed that vegans significantly considered that there was more censorship of information about COVID-19 than vegetarians; however, this result should be taken with great caution given the p-value so close to the cut-off point. Finally, we compared the perceived stress levels of the two groups during 2020 and 2021. The man Whitney U-test revealed that vegetarians felt more stressed than vegans, but the difference was only significant for 2020.

Finally, we compared the perceived stress levels of the two groups during 2020 and 2021. The man Whitney U-test revealed that vegetarians felt more stressed than vegans, but the difference was only significant for 2020. It should be noted that higher levels of perceived stress and, especially, higher levels of censorship were positively and significantly related to being vaccinated ([stress2020] χ 2 (4, N  = 645) = 0.26, p  < 0.001; [stress2021] χ 2 (4, N  = 645) = 0.18, p  < 0.001; [censorship] χ 2 (4, N  = 645) = 0.59, p  < 0.001). In addition, they are related to attitudes toward vaccination, trust in different social actors, and the use of information sources (see Table 12 in Annex ).

Factors influencing the decision to be vaccinated

To investigate the drivers of inclination to vaccinate within the total sample and each group, we conducted a binomial logistic regression, with the probability of vaccination (No/Yes) as the dependent variable. The following independent variables were included in the analysis: being vegan (versus vegetarian), vaccine attributes (safety, effectiveness, coherence, implications for animal suffering), trust in social actors, sources of information (in general and regarding COVID-19 issues), perceived censorship, and perceived stress (2020 and 2021) and sociodemographic variables (age, gender, educational level, countries of residence, and political ideology) as control variables. We first analyzed only the influence of veganism in the model. In the second step, non-significant variables were excluded using a joint omitted variables approach to improve the model fit. We analyzed the whole sample and the two groups (vegans and vegetarians) separately (see Tables 13 – 15 in the Annex for more models).

When we analyzed the factor of being vegan versus vegetarian in the decision to vaccinate, we found that it significantly and negatively influenced the decision to vaccinate (Model #1). However, the explanatory value was very low, as shown by the two pseudo- R 2 s ( R 2 McFadden or R ²McF; R 2 Nagelkerke or R ²N), which accounted for 2% and 3% of the variability.

In the final binomial logistic regression, keeping all significant variables together (Model #2) showed five significant predictors of the vaccination decision for the whole sample. As shown in Table 10 , participants were significantly more likely to be vaccinated if they considered the vaccine safe for humans, effective against COVID-19, and coherent with their veg* values. Furthermore, participants who exhibited lower trust in non-pharmaceutical companies or higher trust in media sources were significantly more inclined to get vaccinated. More importantly, identifying as vegan (versus vegetarian) was no longer a significant predictor of the decision to vaccinate when considered alongside other variables in our statistical model. Mediation effects in the model could explain this, as we found vaccine safety, veg* coherence, and trust as mediators during the analyses (see Table 13 in Annex). The final model fit measures indicated a good fit with lower complexity (AIC = 339; BIC = 400). The two pseudo-R 2 showed that the model explained 56% and 66% of the variability.

We found some differences when we analyzed the groups separately (Table 10 ). In the vegan group, three factors influenced the likelihood of being vaccinated. Specifically, having a positive perception of the vaccine’s safety for humans, the vaccine’s efficacy, and the perception of its coherence with their vegan lifestyle/philosophy increased the likelihood of vaccination. The two pseudo- R 2 showed that the model explained 51% ( R ²McF) and 63% (R²N) of the variability. In the vegetarian group, only having a positive perception of the vaccine’s safety for humans increased the likelihood of vaccination. In this case, the two pseudo- R 2 tests showed that the model explained 70% ( R ²McF) and 74% ( R ²N) of the variability.

Despite the persistent exploitation of nonhuman animals for human benefit across industries, there is growing recognition of animals as sentient beings—a status that is catalyzing legislative protections, integration of welfare policies into corporate practices, and changes in individual behaviors in different countries (Animal Welfare (Sentience) Act, 2022 ; Blattner, 2019 ; Harris, 2021 ; Ley 17/2021, 2021 ; Treaty on the Functioning of the European Union, 2009 ). Primarily driven by animal advocates, the movement is diverse and dynamic, and rooted in varied philosophical beliefs (Wolf, 2014 ) that give rise to numerous moral positions and lifestyle choices regarding animal defence and human use. Animal experimentation emerges within this field as an especially contentious subject, stirring up division within the animal advocacy movement and sparking vigorous ethical discourse. Faced with COVID-19, a global crisis of unprecedented proportions, the challenge to this movement was also unprecedented. To our knowledge, our study is the first to explore the specific reactions of self-identified ethical vegans and vegetarians to the dilemmas posed by the COVID-19 crisis, exploring their attitudes, behavior, and experiences during 2020 and 2021. We now turn to the key findings of our research.

Despite its exploratory nature, our study reveals distinct differences between vegans and vegetarians during the COVID-19 crisis. Our findings broadly delineate the following differences: (i) attitudes and behavior towards vaccination and vaccination rates; (ii) motivations behind choosing to vaccinate and factors explaining their decision to be vaccinated; (iii) perceptions of vaccination consistency with their veg* lifestyle or philosophy; (iv) degrees of conformity with decisions from social actors and crisis-related information; and (v) preferences for traditional information sources on general and COVID-19 specific topics and level of perceived censorship.

Firstly, our vegan respondents are less complacent about vaccination during the COVID-19 crisis than vegetarians. Specifically, vegans show a more negative view of vaccinations, mandatory regulations, and restrictive passports than vegetarians. We also found significant differences between vaccination rates, with fewer vegans being vaccinated. Furthermore, vegans show greater intention to remain unvaccinated as well as more reluctance to continue vaccination when they are already vaccinated. Additionally, vegans not only consider that there has been a higher degree of censorship than vegetarians but also have less trust in the three institutions that made critical decisions during the crisis: intergovernmental bodies, pharmaceutical companies, and scientists. Thus, our results suggest that there is a difference of opinion between vegans and vegetarians regarding the response of institutions and society to vaccination, which places vegans in a more critical stance towards an activity that involves animal testing. This finding aligns with the fact that the literature critical of animal experimentation is typically led by vegan authors (e.g., Horta and Cancino-Rodezno, 2022 ).

Vaccination rates within our sample—82% for vegans and 94% for vegetarians—surpass the international averages recorded during our study period, which ranged from 62% to 82% (these international averages include the ten countries that account for 87% of our respondents). However, it is crucial to recognize the challenges in comparing vaccination data, especially coming from different countries. Consistent, comparable, and internationally aggregated data are scarce. Caution is advised when comparing the number of doses received between the two groups and internationally, as the disparity may be due to multiple factors beyond lifestyle (or diet) choices to including areas or country-specific vaccine accessibility, specific indications for each vaccine brand, public health recommendations, or vaccination protocols.

Secondly, the motivations for vaccination varied between vegetarians and vegans. Although both vegans and vegetarians consider the protection of others as a primary reason for vaccination, it is noteworthy that vegans attach comparatively less importance to the protection of their personal health. This result is reinforced in the logistic regression when it turns out that, for vegetarians, the factor that explains a large amount of variance is the concept of human security. In contrast, for vegans, the likelihood of vaccination was explained by multiple factors, including the assessment of the level of consistency of the vaccine with their philosophy of life. This difference may suggest a variation in motivational focus, with vegans showing a relatively more complex decision and higher priority on altruism. This pattern supports previous findings, including those indicating that vegans score higher levels on several aspects of “heartfulness” than vegetarians (Voll et al., 2023 ), a quality associated with mindfulness and prosocial behavior—characterized by caring, compassion, gratitude, and nurturance. Additional research has shown that vegetarians and vegans differ in their empathic responses at the neural level; specifically, vegans show more intense activation of the mirror neuron motor system and brain structures linked to empathy, social cognition, and prosocial behavior (Filippi et al., 2010 , 2013 ; Moya-Albiol et al., 2010 ). This distinction is relevant, as it has been established that an egalitarian attitude towards animals and humans shares empathy as the underlying factor (e.g., Braunsberger and Flamm, 2019 ).

Thirdly, vegans stated that their values significantly influenced their vaccination decisions more than vegetarians. Additionally, they were more likely to question the justification that animal testing of vaccines was done for a good cause and to recognize the animal suffering involved in the development of the COVID-19 vaccine. This increased awareness and the idea that experimentation is directly and strongly related to vegan concerns rather than vegetarianism may explain this difference. However, it should be noted that, as mentioned above, being vegan or vegetarian was not a good predictor of the final decision to vaccinate.

Lastly, and importantly, a higher percentage of vegans than vegetarians felt that vaccination did not align with their lifestyle or philosophy, thus explicitly acknowledging a direct conflict between their values and their attitudes and behaviors towards COVID-19 vaccination. This perception is not only reflected in the vegans’ statements but is supported by other analyses. Thus, data suggest a more significant cognitive dissonance among vegans, leading to a stronger sense of compromised values.

That said, it is remarkable that, although vegans showed more reluctance or suspicion towards vaccination than vegetarians—and despite initial reluctance towards vaccination—a large majority of vegans eventually demonstrated a high acceptance of vaccines during the health crisis. This apparent contradiction between their convictions and their actions leads to a crucial question: What were the underlying reasons that led vegans to compromise their moral values or relax their altruistic principles against animal experimentation? We propose two main factors that may have influenced this decision: (1) social stress and perceived peer pressure; and (2) the complex moral dilemmas that animal experimentation poses for its ethics.

On the one hand, social stress, and pressure, exacerbated during the pandemic, could have played an important role since it has been pointed out as a common factor in vaccination behavior in the general population, including getting vaccinated because of expectations and feelings of being “targeted” or “bullied” (Lin et al., 2022 ; Walsh et al., 2022 ). Thus, we might think that peer influence and the feeling of being judged or even bullied might have led to decisions that would not otherwise be made. As mentioned at the beginning of this article, we have seen that the debate on vegans and vaccination has been part of mainstream media during the COVID-19 crisis with consistency, unlike the one towards the veggie community. Moreover, although we observed significant differences in the consumption of information about COVID-19 in traditional media by the two groups, vegans have relied heavily on them for information about crisis-related issues, even more so than for other issues. This shows the high likelihood that vegans anticipate vegan stigma—especially with the media’s well-known speciesist bias (Khazaal and Almiron, 2016 ), stigmatization of animal rights advocacy (MacInnis and Hodson, 2021 ) and stigmatization for disrupting social conventions (Markowski and Roxburgh, 2019 ).

It is worth noting that COVID-19 has been starkly politicized and polarized since the beginning. In some countries, acceptance or rejection of the measures, including the progressive media, labeling vaccine dissent as sheer science denial (Bardon, 2021 ). Although the risk of being discriminated against for not being vaccinated was also high regardless of being vegan or not (Bor et al., 2023 ; Caplan, 2022 ; Schuessler et al., 2022 ), this is likely to have a more significant impact on vegans. The stigmatization of all types of dissent as anti-vax, science denial, free-riders, and misinformation (Francés et al., 2021 ) instead of engaging with reasonable concerns (Pruski, 2021 ) was a threat to critical thinking in general but likely had a higher impact on a community like vegans—already singled and stereotyped by media (Cole, 2015 )—as marketing efforts for canceling the “vegan identity” in COVID-19 vaccination showed (Beverland, 2022 ).

Overall, the period saw unprecedented political, corporate, and media pressure on all citizens to accept the vaccine as the only solution—a pharmacological treatment that involved animal experimentation—which may have had a more significant impact on the psychology of vegans due to their willingness to avoid further stigmatization. It is well known that in times of crisis, the public and the media tend to “rally around the flag”, leading to more unreserved support for the authorities and less criticism (a term coined by Mueller, 1973 ; also identified for the COVID-19 crisis, Cunningham, 2020 ). In the case of COVID-19, the period experienced a pervasive and relatively homogeneous media and corporate representation of the crisis based on war metaphors (Chatti, 2021 ; Gui, 2021 ; Panzeri et al., 2021 ; Wicke and Bolognesi, 2020 ; Uysal and Aksak, 2022 ), fear and propaganda (Broudy and Hoop, 2021 ; Francés et al., 2021 ; Nwakpoke Ogbodo et al., 2020 ) and patriotism (Almiron et al., 2022 ; Basir et al., 2020 ) following the political authorities’ narrative (Castro Seixas, 2020 ; Loayssa and Petruccelli, 2022 ) under the intense lobbying of the pharmaceutical industry (Corporate Europe Observatory, 2021 ; Deruelle, 2022 ; Fang, 2021 ). All this emphasizes the imperative of vaccination and puts extraordinary pressure on the whole population, including the veg* community, especially vegans. As Park and Kim ( 2022 ) pointed out, “the pandemic certainly produced dramatic changes in vegans’ lives and sometimes even escalated tensions between vegans and nonvegans” (p. 8).

In terms of animal testing, the discursive positioning of the COVID-19 vaccine may pose a significant challenge to vegan values. Currently, there are no animal-free alternatives for many conventional drugs and medical procedures—there was none for the COVID-19 vaccines—as well as no animal-free alternative medicine in general for vegan individuals favoring options different from chemically synthesized drugs. However, this ethical challenge does not have a single or straightforward interpretation. For instance, amid the crisis, the Vegan Society reminded that the definition of veganism includes the idea that “‘it is not always possible or feasible for vegans to avoid the use of animals,” which, they added, is particularly relevant to medical situations. Furthermore, even though the vegan organization directly acknowledges that the COVID-19 vaccine is tested on animals, it defends its acceptance because “it is playing a key role in tackling the pandemic and saving lives” (“Vegan Society response to COVID-19 vaccine”, 2020 ). The notion that veganism is about choosing the ‘least bad’ option when it comes to animal suffering is widely understood. Similarly, the narrative promoted by PETA ( 2021 ) and The Vegan Society ( 2020 ), among others, suggests that vegans must first take care of themselves to be capable of taking care of other animals. However, this does not imply that vegans are compelled to use animal-based medicines; choosing the “least bad” option does not mean that one must always choose a bad option. They may opt out entirely, just as other members of society might. Although not rigorously studied for this movement, the ethical dilemmas posed by animal experimentation are likely one of the sources of significant controversy amongst vegans, linked to human health and a dominant biomedical paradigm that often leaves little room for alternative health models (Sheldrake, 2012 ; Morcan and Morcan, 2015 ). While vegans call for the abolition of animal experimentation, there is a broad spectrum of beliefs on what is considered acceptable practice in the interim. Peter Singer, for instance, has defended animal experimentation under limited and specified circumstances (Crawley, 2006 ).

Lastly, the challenges raised by animal experimentation also bring contradictions to the surface about the values vegans hold. While veganism is a philosophy of life and social movement that opposes violence towards nonhuman animals, vegans have a different rating scale for different forms of violence. The latter is reflected in our results when we asked vegans about their acceptance of animal use. We found that, compared to use in clothing, food, and entertainment, animal testing is the category least condemned by vegans.

In summary, our findings illuminate the contrasts in how vegans and vegetarians navigated the COVID-19 crisis—with vegans displaying less conformity but, ultimately, facing a profound and greater compromise of their core ethical values.

Our study has illuminated some aspects of the behavioral responses of vegetarians and vegans during the COVID-19 vaccination campaign. Nevertheless, it is essential to recognize the limitations that accompany our findings and to contemplate their influence on the study’s scope and applicability. First, relying on self-reported data from questionnaires was appropriate for our focus on self-identification but may not fully capture the behavioral adherence to ethical vegan or vegetarian lifestyles. Additionally, questionnaires were distributed and collected via convenience and snowball sampling methods. While these are common approaches, they present three fundamental limitations: the sample sizes are relatively small compared to the overall veg* population, participant numbers vary by country, and the results cannot be deemed statistically representative of the entire veg* community.

Third, our approach treated ethical vegans and vegetarians as a single, unified group. Future research might be enhanced by delving into the nuances within each group. Such studies could investigate participants’ personal interpretations of veganism or vegetarianism and the duration and strictness with which they follow these lifestyles. Considering the importance of these variables in the adoption process and the construction of individual and social identity (Nezlek and Forestell, 2020 ; Rosenfeld and Burrow ( 2018 ), could provide valuable insights into the matter. Political ideology may also influence perspectives on vaccination and responses to the crisis, with those holding critical views of political and economic institutions (e.g., veganarchists) possibly exhibiting more negative attitudes.

Lastly, our research prompts questions that extend beyond the scope of the quantitative approach. A significant limitation lies in the complexity of ethical dilemmas, which quantitative data alone cannot fully encapsulate. Vaccination decisions are emotionally charged and imbued with moral significance, particularly for individuals committed to animal advocacy. This study has primarily taken a cognitivist approach, focusing on rational variables. However, the subtleties of ethical decision-making—such as how individuals reconcile their values with the choice to vaccinate—represent a complex landscape that our methods could not thoroughly investigate. Moreover, the delicate equilibrium between public health imperatives and personal ethical beliefs has posed a moral quandary for many, prompting a spectrum of responses influenced by ethical, emotional, and social factors. While comprehensive, our study may not have captured the full intricacy of the veg* community’s response to the crisis, including the roles of individual rationalizations. Future research would thus benefit from qualitative methodologies that delve into the psychological, social, and moral terrains navigated by vegans in decision-making processes. In-depth interviews could illuminate the internal conflicts and justifications surrounding vaccination decisions. Narrative analysis might also reveal how vegans and vegetarians construct their identities and make health-related decisions amidst societal pressures and ethical dilemmas. Adopting a qualitative perspective would complement our findings and provide a richer understanding of the lived experiences of vegetarians and vegans during this unparalleled global health crisis. Moreover, pursuing these lines of inquiry would contribute to the broader discourse on how vegetarians and vegans manage contradictions in a non-vegan world, an area of interest that has been notably explored by other authors (e.g., Greenebaum, 2012 ).

The veg* community encountered significant challenges to their values during COVID-19, particularly regarding vaccination decisions. With the vaccine—a product based on animal experimentation—presented as the sole solution to end the crisis and promoted by government authorities and the media, these individuals faced profound ethical decisions. This exploratory research has presented findings that compare the responses of ethical vegans and vegetarians to the vaccination challenge. Our results indicate that the veg* community is diverse, with vegans exhibiting the least conformist attitudes and behaviors towards the pandemic management measures. Nonetheless, the findings also reveal that despite their critical stance and their aim to protect vulnerable populations, the vegan community has largely compromised their moral values by accepting the vaccine. This research enhances the expanding field of veg* studies and animal rights literature by exploring how a health crisis impacts the behaviors and perspectives of ethical vegetarians and vegans. Our study also contributes to shed light on the challenges and biases that a minority group, such as vegans, may face and how they cope with the pressure to go against the mainstream at a time when society is polarized by a single possible discourse that goes against its moral values.

Data availability

The datasets generated and analyzed during the current study are available from the corresponding author upon reasonable request.

In this paper, the term veg* will be used to include both vegetarian and vegan options.

In this paper, we use non-speciesist language, that is, we avoid using language that commodifies and objectifies nonhuman animals-like singular words used for collectives and thus hiding the individuals in them (fish, sheep, etc.).

For instance, Akhtar (2012a, 2012b) revealed that only 8% of new compounds passing preclinical tests (where animal experimentation is involved) reach the market. The 92% failing to make it to the market proved to be ineffective and/or unsafe in humans. This leads this and other authors to define animal experimentation not only as unethical but also as unreliable and unnecessary.

From January 2023, the US Food and Drugs Administration no longer needs to require animal testing before human trials of drugs (Wadman, 2023 ). https://www.science.org/content/article/fda-no-longer-needs-require-animal-tests-human-drug-trials .

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We extend our gratitude to all the participants who generously shared their time and their experiences by responding to our survey, providing an invaluable foundation for our research. We are also deeply thankful for the constructive and insightful feedback provided by three reviewers, whose comments have significantly enriched and sharpened the quality of this work.

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Díaz, E.M., Almiron, N. & Aranceta-Reboredo, O. Compromised values: a comparative response during the COVID-19 crisis by ethical vegans and vegetarians. Humanit Soc Sci Commun 11 , 485 (2024). https://doi.org/10.1057/s41599-024-02861-5

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Published online: January 2024.

COVID-19 had significant impacts on the field of education and, in turn, on school-based research. During this unprecedented time, nearly all schools closed, disrupting learning as schools shifted to a virtual format. Addressing the lasting effects of school closures is a major challenge in the post-pandemic education climate. Educators indicate these challenges have limited their willingness or ability to participate in research.

We analyzed over 700 reasons for refusal in four recent education studies to examine the effects of COVID-19 on school-based research. About 4% of education leaders cited COVID-19 as the primary factor impacting their unwillingness to participate, while related factors such as learning loss, instructional time, or teacher shortage were cited approximately 16%. Over 40% of schools declined because of required testing and surveys. Given the voluntary nature of participation, the remaining schools declined for various reasons not necessarily related to COVID-19.

Insufficient participation can be detrimental to research by impacting the quantity and quality of data collected and possibly introducing bias into the data, thus skewing findings. In the post-pandemic era, school-based researchers must be mindful of the challenges schools face and develop mitigation strategies to contend with the reluctance to participate in external research.

COVID-19 had significant impacts on the field of education and, in turn, on school-based research. For our purposes, school-based research refers to research conducted within the school setting. During this unprecedented time in our recent history, schools needed to close unexpectedly, resulting in loss of learning time as educators shifted curricula to a virtual format. The shift to remote learning needed to happen quickly, but schools needed time, effort, and funding to source technology and to train both staff and students to use it. Although the use of technology (i.e., Chromebooks/laptops and internet connectivity) increased and these specific devices are now more widely accessible than before COVID-19, a “digital divide” still exists. 1 Furthermore, districts and schools report staffing concerns such as extreme staff turnover rates and the inability to fill vacated positions. 2 Addressing the lasting effects brought about by school closures, learning loss, increased use of technology in instruction, and staffing issues are major challenges that education leaders and decision-makers face in the post–COVID-19 education climate. Consequently, education leaders indicate that the burden of addressing these challenges has limited their willingness or ability to participate in external research initiatives. 3

Key Findings.

The RTI International school recruitment team hosted a series of five focus groups in May and June 2021 to engage with key education leaders at the state, district, and school levels. Education leaders (e.g., state education agency officials; district superintendents, assessment directors, and research personnel; and school principals representing public, private, charter, and virtual schools) from 30 states shared insight on the perceived barriers and benefits to participation in school-based research. These individuals were asked questions about their research priorities and decision-making processes for participation in research initiatives. As leaders openly shared their perspectives throughout the focus groups, the following summarizes their sentiments about the additional challenges to school-based research after COVID-19: “ the burden placed on educators as schools are beginning to recover from COVID-related disruptions and are trying to address student learning loss is widespread. Participation in additional research activities, especially that of voluntary studies, may be considered an untimely request.” Looking ahead to school-based research in a post-pandemic world, education leaders conveyed that there would be additional challenges that include the loss of instructional time, increased teacher workloads, and restriction to visitor access, which could impact in-person data collection. 3

The post-pandemic challenges faced by educators are further highlighted in Institute of Education Sciences (IES) School Pulse Panel results. This survey collected information on the impact of the COVID-19 pandemic from a national sample of elementary, middle, and high schools. Surveys were conducted during the 2021–22 and 2022–23 school years and provide parallel data relative to what was summarized in the RTI focus group report discussed previously. Even 2 years after initial COVID-19 lockdowns, public schools reported increased student and teacher absenteeism in May 2022 compared with prior school years. 2 In the August 2022 Pulse Survey, 53% of public schools reported that they felt understaffed for the upcoming 2022–23 school year, with Midwest and West census regions in the United States reporting the largest number of teacher shortages because of COVID-19. Additionally, 89% of public schools reported that teachers were concerned about students meeting academic standards in the 2021–22 school year, and about half of schools said their students were behind grade level at the beginning of the 2022–2023 school year.

When seeking participation in research studies, it is important that school-based researchers be mindful of these and other challenges facing schools after the return to in-person instruction. The need to prioritize these challenges may lead to nonparticipation by a subset of schools, which can introduce bias into the data or inhibit reliable estimates. School principals and leaders are faced with balancing the demands of participation in an increased number of state and district assessments while knowing that these activities create a loss of instructional time and can increase burden on staff, which could potentially lead to even more staff turnover. In the post-pandemic era, researchers must develop mitigation strategies to contend with education decision-makers’ reluctance to participate in external research.

With the demands placed on schools and educators, it is important to consider the value of education research. Dating back to a congressional mandate of 1867, the collection of statistics relative to education in the United States has been a key component to reflect on the state of our nation’s education system. 4 Although the styles, scope, and nature of the research has evolved since then, education research continues to document trends, outcomes, and comparisons that are key to our students’ future successes. For example, since 1972, the National Center for Education Statistics (NCES) has conducted a series of longitudinal studies covering cohorts of students’ whole school career. NCES data provide important information about student growth and achievement, learning experiences, and transitions through each school level and out of the secondary education system and into postsecondary education or the workforce. Data from NCES studies like these provide educators and policymakers vital information needed to inform policy and action in schools. 5 To understand what is working or not working in terms of educating students and preparing them for the labor force, we must have data on what our students know, the teaching practices and supports available to them, and their outcome data in terms of level of education and labor force success. This information can then be used to adapt the education provided as the world of work changes.

Even before COVID-19, school participation in these large education studies had been declining over the last decade. For example, participation in the early 2010s was around 55% 6 and fell to approximately 45% just before the COVID-19 pandemic. 7 However, it should be noted that the in-school administration of these studies allows for a nationally representative sample of students that is more challenging to achieve with other study designs. School-based researchers are already applying strategies to gain participation in their research, many of which are designed to counteract the stress education leaders experience. 8 The COVID-19 pandemic intensified the challenges faced by educators; therefore, school-based researchers must also amplify their efforts to gain participation in their research to ensure the validity and representativeness of their data.

• Methods and Results

To examine the impacts of COVID-19 on schools’ willingness to participate in school-based research, we reviewed data from the school contacting systems from four large-scale, nationwide school-based research studies that occurred during the 2022–23 academic year. A school contacting system is a centralized, web-based application used to maintain a record of contact data at all levels and information about study participation. Each study spanned the United States and collected data from students in public and private elementary, middle, and high schools. Three of the four studies’ student component lasted a minimum of 1.5 hours, had a school staff survey component, and employed research staff to facilitate the student piece. The fourth study had a significantly shorter in-school student data collection (less than 0.5 hours) and had no staff survey but was administered by classroom teachers.

School Refusal Reason Review

While recruiting districts and schools for these large-scale research studies, schools sometimes provided reasons when they declined to participate. In each study, recruiters were trained to probe for clarifying information when a refusal was given and when no reason was given. The school contacting system was used to document these reasons for refusal. The system captured 717 refusal reasons and an additional 429 refusals where no reason was given. Our team reviewed the 717 reasons cited and coded responses based on select “key terms” previously identified in the focus groups conducted in 2020 and 2021. Table 1 breaks down the categories across studies of this coding.

Results of school refusal reason from four large nationwide studies conducted in the 2022–23 school year  .

In many instances where schools did not provide a reason for declining participation, most simply stated that they were not interested and did not respond to attempts to clarify their reason for refusal. This unresponsiveness makes the refusal reasons that were provided even more telling and valuable when considering how researchers can design their recruitment efforts to better encourage schools’ participation in the future.

Although few school leaders directly cited COVID-19 as a reason for refusing (~3%), school staff gave reasons for refusal that may be associated with the stress COVID-19 placed on schools, namely learning loss and teacher shortages. For instance, one educator said, “the pandemic had a significant disruption on our students’ time on learning and consistency of their schedules.”

School leaders specifically cited loss of instruction time as one of the reasons for nonparticipation (~8%). However, an additional ~42% cited having too much other testing or ongoing surveys as a refusal reason. Although respondents did not mention this category in the 2021 virtual focus groups, we included it in the refusal reason coding because schools also lose a significant amount of instructional time to required federal, state, and local assessments, and school leaders frequently cited this as a refusal reason. Given the impact of COVID-19 and the subsequent learning loss, schools prioritize using classroom time for instruction rather than additional voluntary, and often burdensome, assessments. One school noted the following:

Due to the enormous loss of contact hours with our students due to the Covid [sic] impact either directly from sickness or quarantine time away from the classroom, we have to place our students’ academic needs at the top of our list as we make our future calendar plans. As we already have grade-level testing scheduled throughout the year that is essential to help us view and meet benchmarks, we have to decline participation in this study at this time.

Schools strive to maximize every minute of instructional time and are working intentionally to minimize interruptions to provide a flow and continuity of learning that will accelerate student growth.

On average, respondents cited staffing-related issues as a reason for refusal ~8% of the time, including cases where substantial leadership changes occurred in the prior year. One school leader commented, “ At this time, we are going to opt out of participating as our school has undergone significant changes for both staff, students and leadership over the course of the last two years.” Staffing issues can pose significant challenges for conducting school-based research. School-based research often involves collaborating with school staff members—such as teachers or administrators—who play a crucial role in facilitating the study and ensuring its successful implementation. When these school staff members are already stretched thin because of unfilled positions or other responsibilities, it can create several obstacles such as limited availability and reduced support and cooperation for the research project. Some schools also noted that they did not have enough teaching staff to accommodate a research study: “ Currently we do not have the manpower to facilitate a school coordinator for the optional study... As you are aware, the unprecedented times have put a strain on the demands of our teachers and staff and we are working closely together to ensure the success of our students. ”

Schools did provide other non–COVID-19 reasons for their refusal in many instances (~39%):

The study was not mandatory, or there was a school, district, or state policy to not participate in outside research.

Some schools claimed that their student population is unique in some way (e.g., other language, boarding schools, student with disabilities) and should thus not be included, although it was explained that the study design does allow for these uniquities.

Schools noted time constraints (not mentioning testing or surveys).

Staff capacity issues where staff turnover or teacher shortage was also mentioned.

However, because of the narrow focus of this brief, we will not delve into these other reasons in further detail.

Although study 4 was also a nationwide study conducted during the same period as studies 1 through 3, schools that declined to participate did not cite COVID-19, staffing shortages, or loss of instructional time as refusal reasons nearly as often as in studies 1 through 3. For study 4, schools that declined to participate provided no reason at all for their refusal 1.5 times more than schools that did provide a reason; of the schools that did provide a reason for refusing, the majority (~54%) cited participation in other testing or surveys as the primary reason they declined to participate. Table 2 summarizes the research method differences among studies 1 through 4.

Summary of research method differences among studies 1 through 4.

• Future Considerations

Nonparticipation of a subset of schools causes a gap in data. This gap has implications for the accuracy and representativeness of the data collected. Our review of the IES Pulse Survey data in conjunction with RTI recruitment experiences after COVID-19 reveals that schools are even less likely to participate, and the reasons for this vary. The finding from the IES Pulse survey that Midwest and West census regions reported the largest number of teacher shortages because of COVID-19 should be considered as it can further skew participation in nationally representative studies. The nonparticipation of schools in these regions can introduce biases and affect the generalizability of the study's results. Additional research and correlating study data are needed to determine the statistical significance of this finding and to explore opportunities to mitigate the effects of nonparticipation in particular census regions. One possible mitigation strategy to overcome staffing shortages would be for the study to offer to pay for a substitute teacher to offset the time it may take for school staff to prepare for and administer the survey. Another mitigation strategy includes oversampling, where regions known to be underrepresented are oversampled so participation results can still be nationally representative.

Schools that refused studies 1 through 3 were also concerned about research activities interfering with instructional time; however, this was not cited in study 4. The study 4 design was significantly shorter in length than the other studies (less than 30 minutes) and could be completed entirely online, without external research staff coming into the building and disrupting routines. To limit research activities interfering with instructional time, researchers should consider (1) whether their research questions could be effectively answered with a study design in which research staff do not need to visit the school campus and (2) the possibility of using instruments that can be completed within one class period (i.e., typically less than 45 minutes). Such study designs have, in part, been made more feasible as a result of increased student and school access to computers and internet. Although an alternate study design may be considered for future studies (like study 4), research teams must consider whether schools are still able to provide devices for web-based research.

Beginning with the planning phase of any study, researchers should start thinking through mitigation strategies in the planning stages and consider the substantial time and effort required for recruiting schools into voluntary research and budget accordingly. Allocating an extended timeframe for recruitment efforts can significantly enhance the prospects of school participation. A longer timeframe allows for the development of robust relationships with educational institutions, nurturing trust and understanding about a study's potential impact and allowing time to consult with district staff on the development of research application packages, which a growing number of educational institutions now require. Time for a more in-depth engagement strategy enables recruitment staff to develop materials and communication strategies tailored to articulate the value of the particular research study to each intended audience member—district and school leaders, teachers, students, and the broader field of education. This extended recruitment duration not only provides flexibility but also allows for multiple touchpoints and interactions to address concerns, provide clarifications, account for the challenge of working with school staff who are overburdened, and build a sense of collective ownership of the research endeavor among all impacted audiences. An extended recruitment timeline offers the opportunity to adapt strategies in response to evolving situations, fostering a better chance of garnering enthusiasm and commitment from schools that may initially be hesitant. Ultimately, investing additional time and resources in the recruitment process is a proactive approach that can significantly increase the likelihood of school involvement and overall research success.

As we have seen in the past few years, COVID-19 has created a new set of obstacles to overcome in the field of school-based research. These barriers to school-based research, including those that have arisen more prominently since COVID-19, will continue to persist. However, the value of conducting school-based research studies remains. With this in mind, those who design these studies, as well as those who work with the schools to participate in them, must prepare to face these additional challenges. Continued in-depth examination of these barriers will help both study designers and recruiters devise agile solutions aimed at specifically addressing school’s concerns with participation. School-based recruiters genuinely believe in the value of these research studies and will continue to seek ways to alleviate concerns to gain maximum cooperation from schools and districts. As we continue to articulate the value of these data, we will continue to be mindful of common refusal themes and trends, document these trends, and work to develop mitigation strategies.

• Acknowledgments

We would like to thank Elizabeth Glennie for providing mentorship and guidance during the writing process. Your insight and feedback were greatly appreciated and helped bring our paper to life. Also, a special thank you to Debbie Herget who has supported and advocated for us and encouraged us to write about our school-based recruitment experiences to share with the education community.

We would also like to thank Kimrey Millar who has led much of our recruitment work and developed many of the team’s strategies and methods. Also, thank you to RTI Recruitment members: Susan Fleming, Therese Hansen, Alisa Debnam, Monica Funari, and Jennifer Krause. The experiences within this paper are a culmination of your heartfelt outreach to education leaders in our nation and how we can work together on critical research topics in our schools. A special thank you to the RTI programming team that supports and maintains our school contacting systems, including Christopher Alexander, Courtney Waterman, and Wesley Toliver, among others.

Sara Carter , MS, is a research education analyst at RTI International.

Jane Griffin , MEd, is a senior research education analyst at RTI.

Samantha Lako , BA, is an education analyst at RTI.

Cheryl Harewood , BA, is an education analyst at RTI.

Lisa Kessler , MA, is a research education analyst at RTI.

Elizabeth Parish , MA, is a research education analyst at RTI.

RTI Press Associate Editor : Amber Gove

Suggested Citation : Carter, S., Griffin, J., Lako, S., Harewood, C., Kessler, L., and Parish, E. (2024). The Impacts of COVID-19 on Schools’ Willingness to Participate in Research . RTI Press Publication No. RB-0036-2401. Research Triangle Park, NC: RTI Press. https://doi.org/10.3768/rtipress.2024.rb.0036.2401

This work is distributed under the terms of a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 license (CC BY-NC-ND), a copy of which is available at https://creativecommons.org/licenses/by-nc-nd/4.0

• Cite this Page Carter S, Griffin J, Lako S, et al. The Impacts of COVID-19 on Schools’ Willingness to Participate in Research. 2024 Jan. In: RTI Press Research Brief [Internet]. Research Triangle Park (NC): RTI Press; 2014-. doi: 10.3768/rtipress.2024.rb.0036.2401
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