action research title about pandemic

Reopening K-12 Schools During the COVID-19 Pandemic: Prioritizing Health, Equity, and Communities (2020)

Chapter: 6 recommendations and urgent research, 6 recommendations and urgent research.

Whether to reopen school buildings for the 2020–2021 school year is one of the most consequential and complex decisions many education leaders will ever have to make. While the benefits of reopening for students, families, and communities are clear, leaders must also take into account the health risks to school personnel and students’ families, as well as the practicality and cost of the mitigation strategies that will be needed to operate safely. These decisions are made more difficult by the lack of definitive evidence about transmission in children or about which mitigation measures are most effective for limiting the spread of the virus in schools.

Recognizing these challenges and the difficult choices faced by education leaders, the committee offers a set of eight recommendations intended both to provide guidance as leaders make these choices and to serve as a call to action for other stakeholders to provide support for educators in this difficult time. We also offer a ninth recommendation identifying four areas of research we believe need urgent attention so that decision-makers can soon have the evidence base they need for making more informed choices.

Recommendation 1: The Decision to Reopen

Districts should weigh the relative health risks of reopening against the educational risks of providing no in-person instruction in Fall 2020. Given the importance of in-person interaction for learning and development, districts should prioritize reopening with an emphasis on providing full-time, in-person instruction in grades K – 5 and for students with special needs who would be best served by in-person instruction.

A complex set of risks and trade-offs surrounds decisions about reopening school buildings. Reopening schools for in-person learning will necessarily bring a number of risks related to health and safety. Not reopening schools, however, also carries a number of risks that need to be considered. Distance learning, while an essential tool for ensuring continuity of instruction when school buildings are closed, cannot fully take the place of in-person interaction. Moreover, disparities in access to reliable Internet and appropriate electronic devices could compound already existing educational inequities. The risks of not having face-to-face learning are especially high for young children, who may suffer long-term consequences academically if they fall behind in the early grades.

Recommendation 2: Precautions for Reopening

To reopen during the pandemic, schools and districts should provide surgical masks for all teachers and staff, as well as supplies for effective hand hygiene for all people who enter school buildings.

In order to open for in-person learning, schools and districts will need to leverage the strengths and talents of teachers and school staff by attending to their health and safety concerns. As discussed in Chapter 3 , a significant portion of the teacher workforce is over the age of 65, signaling that these individuals are both at increased risk related to COVID-19, and eligible for retirement. This reality, combined with the fact that many schools and districts may choose to limit interaction among students by assigning students to smaller cohorts or pods, poses a serious human capital challenge for education stakeholders to consider. To make returning to work a safe and desirable option, stakeholders will need to take the health and safety concerns of teachers and staff seriously.

Recommendation 3: Partnerships Between School Districts and Public Health Officials

Local public health officials should partner with districts to

• assess the readiness of school facilities to ensure that they meet the minimum health and safety standards necessary to support COVID-19 mitigation strategies;
• consult on proposed plans for mitigating the spread of COVID-19;
• develop a protocol for monitoring data on the virus in order to (a) track community spread and (b) make decisions about changes to the mitigation strategies in place in schools and when future full school closures might be necessary;
• participate in shared decision-making about when it is necessary to initiate closure of schools for in-person learning; and
• design and deliver COVID-19–related prevention and health promotion training to staff, community, and students.

Not only will decisions related to when and how to reopen schools for in-person learning need to reflect a school district’s priorities and constraints, but also plans for reopening will need to include careful monitoring of the prevalence of COVID-19 in the community. In light of the rapidly changing circumstances surrounding what is known about COVID-19, the committee emphasizes that it is unreasonable to expect school districts to have the requisite in-house public health expertise to make ongoing decisions about reopening and operating schools.

Recommendation 4: Access to Public Health Expertise

States should ensure that, in portions of the state where public health offices are short staffed or lack personnel with expertise in infectious disease, districts have access to the ongoing support from public health officials that is needed to monitor and maintain the health of students and staff.

Not all school districts will be able to immediately access the appropriate public health expertise locally. In many parts of the United States, especially rural areas, public health offices may be short staffed or may lack staff with deep expertise in infectious disease. Yet public health expertise is necessary for making the myriad ongoing decisions described in this report, and it is incumbent upon states to ensure that this need is addressed.

Recommendation 5: Decision-Making Coalitions

State and local decision-makers and education leaders should develop a mechanism, such as a local task force, that allows for input from representatives of school staff, families, local health officials, and other community interests to inform decisions related to reopening schools. Such a cross-sector task force should

• determine educational priorities and community values related to opening schools;
• be explicit about financial, staffing, and facilities-related constraints;
• determine a plan for informing ongoing decisions about schools;
• establish a plan for communication; and
• liaise with communities to advocate for needed resources.

While public health expertise is a critical component of making smart decisions related to reopening schools, it is just one perspective necessary for outlining a plan that reflects the needs and priorities of a community. As discussed in Chapter 4 , many different stakeholders are invested in K–12

education. In order to approach reopening schools in ways that reflect a community’s collective values, it is critical that state and local decision makers engage a range of different constituencies in the process of delineating a plan for reopening schools and monitoring their ongoing safety.

Recommendation 6: Equity in Reopening

In developing plans for reopening schools and implementing mitigation strategies, districts should take into account existing disparities within and across schools. Across schools, plans need to address disparities in school facilities, staffing shortages, overcrowding, and remote learning infrastructures. Within schools, plans should address disparities in resources for students and families. These issues might include access to technology, health care services, ability to provide masks for students, and other considerations.

As this report discusses throughout, decisions around reopening schools are occurring in the context of a deeply inequitable public school system. Unless school districts directly address equity in their planning process, reopening schools during the COVID-19 pandemic will undoubtedly exacerbate existing disparities in educational access and outcomes. As part of the planning process, districts will need to understand how existing inequities (in school facilities, staffing, access to resources, etc.) are likely to interact with the lived realities of communities disproportionately affected by COVID-19, so that the plans can identify where additional resources or special considerations are necessary.

Recommendation 7: Addressing Financial Burdens for Schools and Districts

Schools will not be able to take on the entire financial burden of implementing the mitigation strategies. Federal and state governments should provide significant resources to districts and schools to enable them to implement the suite of measures required to maintain individual and community health and allow schools to remain open. Under-resourced districts with aging facilities in poor condition will need additional financial support to bring facilities to basic health and safety standards. In addition, state departments of education should not penalize schools by withholding statewide school funding formula monies for student absences during the COVID-19 pandemic.

The various strategies for mitigating the transmission of COVID-19 reviewed in Chapter 5 will be the primary tools used by schools to support the health of their staff and students as they reopen school buildings. This list of strategies is long and complex, and implementing them will require a substantial investment of financial and human capital resources. These considerable expenditures are coming at a time when many districts are

looking at uncertain financial futures as a result of the pandemic. While the size of the funding shortfall will depend on how well resourced a school district is, many districts will be unable to afford implementing the entire suite of mitigation measures, potentially leaving students and staff in those districts at greater risk of infection. In the absence of substantial financial support from the federal government and state governments, it is likely that the communities most impacted by COVID-19 will see even worse health outcomes in the wake of reopening schools.

As noted throughout this report, districts within the same state are likely to have significantly different resources (financial, human capital, etc.) to put toward reopening schools. States will need to have a role in ensuring an equitable distribution of resources so that districts can implement the measures required for a strategic reopening in their local contexts. Further, in order to equitably support districts and schools, states should not withhold funds or otherwise penalize districts if families choose remote or distance learning options for their children in Fall 2020.

Recommendation 8: High-Priority Mitigation Strategies

Based on what is currently known about the spread of COVID-19, districts should prioritize mask wearing, providing healthy hand hygiene solutions, physical distancing, and limiting large gatherings. Cleaning, ventilation, and air filtration are also important, but attending to those strategies alone will not sufficiently lower the risk of transmission. Creating small cohorts of students is another promising strategy.

Although it is impossible to eliminate the risk of transmission of COVID-19 in schools completely, the mitigation strategies recommended by the Centers for Disease Control and Prevention and described in this report are showing promise for reducing transmission when implemented effectively. The lack of evidence about the relative effectiveness of different strategies, especially given the considerable costs involved in implementing them all, is a challenge for districts and schools, which are left largely on their own to prioritize which of the mitigation strategies to implement and how to make judgments about any necessary modifications due to practical constraints. The committee drew on its collective expertise and the limited available evidence to identify a few mitigation strategies that appear to show promise for districts looking to leverage limited resources.

Recommendation 9: Urgent Research

The research community should immediately conduct research that will provide the evidence needed to make informed decisions about school reopening and safe operation. The most urgent areas for inquiry are

• children and transmission of COVID-19 ,
• the role of reopening schools in contributing to the spread of COVID-19 in communities ,
• the role of airborne transmission of COVID-19, and
• the effectiveness of mitigation strategies.

Children and Transmission of COVID-19

The fact that as of this writing there was no scientific consensus on the role of children in transmitting COVID-19—to one another or to adults—poses a serious challenge for decision-makers. Although it is known that children are less likely both to contract COVID-19 and to experience significant consequences if they do, it is simply impossible to ascertain how likely children are to transmit the disease to school staff or adults at home. Clarity on this point would offer much-needed guidance for decision-makers regarding the necessity of various mitigation measures, and could potentially alleviate considerable anxiety for adults in proximity to students slated to attend school in person. Therefore, research is urgently needed to help understand the role of children in transmitting COVID-19.

The Role of Reopening Schools in Contributing to the Spread of COVID-19 in Communities

In addition to uncertainty around the role of children in transmitting COVID-19, much of the anxiety around reopening schools relates to how schools as a large gathering place for individuals will factor into the spread of COVID-19 in a community. To date, research on this question has produced mixed results ( Hsiang et al., 2020 ). Clarity in this area could provide further insight into what kinds of mitigation strategies might be of the highest priority for schools. As a result, research is urgently needed that looks specifically at how the reopening of schools matters (or does not) for the prevalence of COVID-19.

The Role of Airborne Transmission of COVID-19

In the process of writing this report, the committee repeatedly returned to conversations around the role of airborne transmission of COVID-19. As described in Chapter 3 , indoor air quality in U.S. public schools is notoriously poor, which can have innumerable deleterious health impacts on students and staff. However, because there is not yet scientific consensus on the role of airborne transmission in the spread of the virus, it is also unclear how the indoor air quality of schools matters in the spread of COVID-19. Given the considerable cost associated with updating aging

facilities, it is particularly important to understand the exact role of airborne transmission such that stakeholders can assess the relative value and utility of that investment.

Effectiveness of Mitigation Strategies

Although this committee was expressly tasked with assessing the effectiveness and practicality of the various mitigation strategies intended to reduce the transmission of COVID-19, we were repeatedly thwarted in that endeavor by the lack of clarifying evidence. If this committee of experts was unable to reach consensus on the best direction for schools, it is likely to be extremely challenging for education stakeholders to navigate the plethora of guidance documents to determine what is best for their schools and district. Research on the effectiveness of mitigation strategies and their specific utility in school settings is needed immediately. The committee also suggests that as schools reopen to in-person learning in Fall 2020, researchers leverage the occasion to conduct research in real time, and provide guidance as soon as it becomes available.

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The COVID-19 pandemic has presented unprecedented challenges to the nation's K-12 education system. The rush to slow the spread of the virus led to closures of schools across the country, with little time to ensure continuity of instruction or to create a framework for deciding when and how to reopen schools. States, districts, and schools are now grappling with the complex and high-stakes questions of whether to reopen school buildings and how to operate them safely if they do reopen. These decisions need to be informed by the most up-to-date evidence about the SARS-CoV-2 virus that causes COVID-19; about the impacts of school closures on students and families; and about the complexities of operating school buildings as the pandemic persists.

Reopening K-12 Schools During the COVID-19 Pandemic: Prioritizing Health, Equity, and Communities provides guidance on the reopening and operation of elementary and secondary schools for the 2020-2021 school year. The recommendations of this report are designed to help districts and schools successfully navigate the complex decisions around reopening school buildings, keeping them open, and operating them safely.

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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.

This research received no external funding.

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University Hospital and School of Medicine, Universidade Federal de Minas Gerais, Belo Horizonte, Minas Gerais, Brazil

Israel Júnior Borges do Nascimento & Milena Soriano Marcolino

Medical College of Wisconsin, Milwaukee, WI, USA

Israel Júnior Borges do Nascimento

Helene Fuld Health Trust National Institute for Evidence-based Practice in Nursing and Healthcare, College of Nursing, The Ohio State University, Columbus, OH, USA

Dónal P. O’Mathúna

School of Nursing, Psychotherapy and Community Health, Dublin City University, Dublin, Ireland

Department of Anesthesiology, Intensive Care and Pain Medicine, University of Münster, Münster, Germany

Thilo Caspar von Groote

Department of Sport and Health Science, Technische Universität München, Munich, Germany

Hebatullah Mohamed Abdulazeem

School of Health Sciences, Faculty of Health and Medicine, The University of Newcastle, Callaghan, Australia

Ishanka Weerasekara

Department of Physiotherapy, Faculty of Allied Health Sciences, University of Peradeniya, Peradeniya, Sri Lanka

Cochrane Croatia, University of Split, School of Medicine, Split, Croatia

Ana Marusic, Irena Zakarija-Grkovic & Tina Poklepovic Pericic

Center for Evidence-Based Medicine and Health Care, Catholic University of Croatia, Ilica 242, 10000, Zagreb, Croatia

Livia Puljak

Cochrane Brazil, Evidence-Based Health Program, Universidade Federal de São Paulo, São Paulo, Brazil

Vinicius Tassoni Civile & Alvaro Nagib Atallah

Yorkville University, Fredericton, New Brunswick, Canada

Santino Filoso

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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.

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• Published: 04 August 2023

Countering the “wrong story”: a Participatory Action Research approach to developing COVID-19 vaccine information videos with First Nations leaders in Australia

• Vicki Kerrigan   ORCID: orcid.org/0000-0001-6863-1528 1 ,
• Deanna Park 1 ,
• Cheryl Ross 1 ,
• Rarrtjiwuy Melanie Herdman 1 ,
• Phillip Merrdi Wilson 2 ,
• Charlie Gunabarra 3 ,
• Will Tinapple 4 ,
• Jeanette Burrunali 5 ,
• Jill Nganjmirra 5 ,
• Anna P. Ralph 1 , 6 &
• Jane Davies   ORCID: orcid.org/0000-0002-3843-837X 1 , 6  

Humanities and Social Sciences Communications volume  10 , Article number:  479 ( 2023 ) Cite this article

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• Cultural and media studies
• Health humanities
• Language and linguistics

The COVID-19 pandemic, coupled with the “infodemic” of misinformation, meant First Nations peoples in Australia’s Northern Territory were hearing “the wrong story” about COVID-19 vaccines. In March 2021, when the Australian government offered COVID-19 vaccines to First Nations adults there was no vaccine information designed with, or for, the priority group. To address this gap, we conducted a Participatory Action Research project in which First Nations leaders collaborated with White clinicians, communication researchers and practitioners to co-design 16 COVID-19 vaccine videos presented by First Nations leaders who spoke 9 languages. Our approach was guided by Critical Race Theory and decolonising processes including Freirean pedagogy. Data included interviews and social media analytics. Videos, mainly distributed by Facebook, were valued by the target audience because trusted leaders delivered information in a culturally safe manner and the message did not attempt to enforce vaccination but instead provided information to sovereign individuals to make an informed choice. The co-design production process was found to be as important as the video outputs. The co-design allowed for knowledge exchange which led to video presenters becoming vaccine champions and clinicians developing a deeper understanding of vaccine hesitancy. Social media data revealed that: sponsored Facebook posts have the largest reach; videos shared on a government branded YouTube page had very low impact; the popularity of videos was not in proportion to the number of language speakers and there is value in reposting content on Facebook. Effective communication during a health crisis such as the COVID-19 pandemic requires more than a direct translation of a script written by health professionals; it involves relationships of reciprocity and a decolonised approach to resource production which centres First Nations priorities and values.

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Introduction

As the COVID-19 virus spread globally an equally worrying contagion spread: the “infodemic”, which was as “dangerous to human health and security as the pandemic itself”. (United Nations Secretary General, 2020 ) The “infodemic” referred to COVID-19 information over-load and misinformation spread through social media which promoted “scapegoating and scare-mongering” and hampered public health efforts. (United Nations Secretary General, 2020 ) In Australia’s Northern Territory (NT), where First Nations peoples constitute 30% of the population, the global “infodemic” was compounded by inconsistent Australian government vaccine messaging and a fear of health services “due to racism”. (Australian Bureau of Statistics, 2022b ; Rogers & Powe, 2022 ; Li et al., 2022 ; Stanley et al., 2021 ; Tsirtsakis, 2021 ) Additionally, in the NT where 60% of First Nations peoples speak one or more of the approximately 100 languages, it was evident that First Nations language speakers were “far less willing to take a vaccine” than others. (Biddle et al., 2021 p.11; Northern Territory Government, 2022 ).

Against this backdrop, the Australian government began the vaccine roll out in March 2021 targeting priority groups including First Nations adults. This was due to the potential devastating impact of COVID-19 spreading into communities which was recognised because First Nations peoples experience disproportionate rates of poor health resulting from generations of racist policies and practices. (Connolly et al., 2021 ; Crooks et al., 2020 ; McCaffery et al., 2020 ; Stanley et al., 2021 ) However, when the vaccine roll out began not one First Nations person in the NT had been diagnosed with COVID-19. (Northern Territory Department of Health, 2021 ) While most of Australia was suffering through lock downs and COVID-19 related deaths, the NT was described as “the safest place in Australia” (Kerrigan et al., 2020 ) and First Nations peoples questioned the need for the vaccine. A co-designed information campaign was required to subvert “infodemic” related fears amongst First Nations peoples in the NT. (Biddle et al., 2021 ).

Study rationale

When this study was designed there were no locally relevant information campaigns for the NT which provided First Nations peoples with reliable information. Additionally, the underfunded and overstretched NT health services (Zhao et al., 2022 ) did not have capacity to create a public health campaign. Aboriginal Community Controlled Health Organisations (ACCHO) also lacked capacity to create local campaigns as staff focused on the complex logistics of vaccine distribution to remote NT communities.

This project brought together First Nations leaders and White clinicians and communication researcher-practitioners to co-design, distribute via social media and evaluate locally relevant COVID-19 vaccine videos. The co-design approach to video production was vital because historically Australian government health campaigns, designed to suit White communication norms, have inspired resistance among First Nations peoples. (Bond et al., 2012 ; Crooks et al., 2020 ; Kerrigan et al., 2020 ; Seale et al., 2022 ) The rationale for distributing videos via social media was twofold. Social media has been used to build and express self-determination narratives (Carlson, 2013 ; Frazer et al., 2022 ) and social media was successfully used by ACCHOs to promote social distancing and other precautionary measures during the early stages of the pandemic. (Behrendt, 2021 ) Finally, it was imperative that the evaluation measure the impact of videos through a First Nations lens. (Barker et al., 2022 ) First Nations researchers explained videos would be deemed successful if family and friends received information that supported informed decision making. The goal of the project was not to increase vaccine uptake which is often used by Western biomedical researchers as a measure of success. (Kerrigan et al., 2023 ) The decision to be vaccinated must remain with sovereign individuals and families and this, in part, was connected to the fact that historically vaccines had been tested on First Nations peoples. (Mayes, 2020 ; Mosby & Swidrovich, 2021 ).

The aim of the paper is to unpack the processes employed to create COVID-19 vaccine videos for First Nations communities and to present the evaluation of the videos. Our work may be relevant to health and communication professionals who are working to decolonise health communication.

Terminology

First Nations peoples are identified in relation to their Nation, affiliated country and/or language group. Non-Indigenous researchers capitalise the word White to associate themselves with the socially constructed racial category defined in Whiteness studies. (Bargallie, 2020 ) The word White is used to remind non-Indigenous researchers to critically reflect on unearned privilege and power with the aim of decolonising thought and practice. (Kowal, 2008 ).

Researcher backgrounds

Lead author VK is a White intercultural health communication researcher and practitioner. DP is a researcher, allied health professional and Aboriginal woman whose family originates from Central Australia (Eastern Arrernte). CR is an Arrernte/Kaytete woman, a project officer, community engagement specialist and family mediator. RMH is a Gälpu women from the Yolŋu nation. She works across health, environment and research sectors. PMW is an Aboriginal Health Practitioner (AHP) and Ngan’gikurunggurr speaker from the West Daly region of the NT. He lives in the Nauiyu community on Malak Malak land. WT is a White multimedia producer who has 20+ years’ experience facilitating video making workshops with First Nations communities. CG is a Djinang-Wulaki man, Burarra speaker and Elder from Maningrida. CG became an AHP in 1976 and is chair of the Mala’la Health Board. JB is a Kunwinjku speaking Djalama women who works as a language worker at Bininj Kunwok Regional Language Centre (BKRLC) and sometimes at the NT Aboriginal Interpreter Service. JN is a Kunwinjku speaking Bularldja Elder who is the chairperson at BKRLC. AR and JD are White global health researchers and infectious disease clinicians.

Study design

This Participatory Action Research (PAR) (Baum et al., 2006 ) project, which drew on elements of constructivist grounded theory (CGT), (Charmaz, 2014 ; Simmons and Gregory, 2003 ) was guided by decolonising philosophies including Critical Race Theory (CRT) and Freirean pedagogy.(Delgado et al., 2017 ; Freire, 1970 ; Smith, 2012 ) These two philosophies are linked by a critical focus on the hegemony, foregrounding race and racism, and a commitment to participatory approaches and prioritising marginalised voices and worldviews. When applied, our methodologically robust approach works to subvert the dominance of Whiteness. The study can be divided into two phases. Phase 1 refers to the co-design of videos and phase 2 refers to the evaluation of videos.

Participant sampling

First Nations leaders and Elders were invited through personal and professional networks to collaborate with White infectious disease specialists, communication researchers and video producers. All First Nations participants were 18 years+, spoke a First Nations language and/or English and lived in NT remote, regional and city centres. In phase 1, First Nations participants with a vested interest in the issue were purposefully sampled. (Baum et al., 2006 ; Hall, 1985 ) The sample included clinical professionals, health promotion workers, interpreters, artists, language centre workers, members of an Infectious Disease Indigenous Reference Group (Davies et al., 2022 ) and First Nations trainees aged between 19 and 26 years from the Menzies School of Health Research. In phase 2, theoretical sampling was incorporated to ensure data explored the diverse perspectives required for a comprehensive evaluation. (Charmaz, 2014 ) The sample included some of the same collaborators from phase 1 who became video presenters and also co-authors on this publication. During phase 2, researchers expanded the sample to include Royal Darwin Hospital (RDH) inpatients and Aboriginal Health Practitioners (AHP’s) who independently evaluated the videos. Inpatients were invited to participate by DP who approached individuals on the RDH campus. AHP’s were invited through professional networks.

Reciprocity in research practice

Video presenters who were not employed by stakeholders were paid according to their preferences. RDH inpatients and AHPs were thanked for sharing their knowledge with a voucher for a local café or supermarket. Pseudonyms were assigned to inpatients and AHPs. As per PAR, the video presenters who were participant-researchers and therefore are co-authors use their real names to ensure ideas are accurately attributed.

Data collection

Data included structured and semi-structured interviews, researcher field notes and social media analytics.

In phase 1, CR completed structured interviews (Fontana & Prokos, 2016 ) with the Infectious Disease Indigenous Reference Group. Interviews produced handwritten notes. Additionally, CR and VK scrolled through personal Facebook and LinkedIn feeds and took screenshots of pro and anti-vaccine conversations. CR, VK, AR and JD documented yarns with First Nations leaders and Menzies trainees as field notes. (Bessarab & Ng’andu, 2010 ) VK and WT also kept field notes reflecting on the video production process. (Schön, 1987 ) In phase 2, semi structured interviews with video presenters were conducted by VK to explore the production process and perceived impact of videos. In search of divergent views, DP conducted semi structured interviews with RDH inpatients and AHPs after they watched the video/s relevant to them. Recorded interviews were transcribed verbatim.

In phase 2, social media analytics were collected alongside qualitative data. Analytics were collected over 3-months from the date each video was published. Data came from Menzies School of Health Research’s Facebook, Vimeo, Twitter and LinkedIn accounts; the NT Department of Health’s Facebook (organic and sponsored), the parliamentary Member for Lingiari Facebook (sponsored), Miwatj Health Facebook and Indigenous.gov.au YouTube. We reported reach, impressions, views and engagement. (Newberry, 2022 ) Reach refers to the number of people the video reached, organically or via sponsorship. Impressions refers to the number of times people saw the video in their feed which can be higher than reach because the video may have made an “impression” on someone’s feed more than once. Views refer to how many people played the video: Facebook defines view as 3 seconds or more, whereas YouTube defines view as 30 seconds or more. Engagement indicates whether a user interacted with the post.

Data analysis

Data was inductively analysed and guided by Indigenous knowledges and decolonising theories. (Delgado et al., 2017 ; Freire, 1970 ; Smith, 2012 ) In phase 1, CR analysed data from structured interviews to identify common concerns across language groups. Afterwards, CR, VK, AR and JD discussed the identified concerns which were synthesised into five questions to be addressed in the videos. (Charmaz, 2014 ) Clinicians AR and JD provided evidence-based clinical information to answer the questions. Information was then rewritten by VK, CR, WT, RMH and JD into plain English ensuring the information followed the Therapeutic Goods Administrations (TGA) guidelines on advertising vaccines. (Therapeutic Goods Administration, 2019 ).

In phase 2, DP read and re-read interview transcripts to identify similarities, differences and patterns in the data. This resulted in analytical memos. (Charmaz 2014 ) VK used NVivo12 to review the transcripts while listening to the recorded interviews to minimise dematerialising voices to words disconnected from lived experience. (Gallagher, 2020 ) This produced memos and codes. The combined preliminary analysis led to categories that captured shared and divergent experiences. Researchers DP and VK conducted “sense checks” of the data to ensure the narrative was a true reflection of the participants and not the perspective of the researchers. (Barkham and Ersser, 2017 ) Social media analytics was tabulated by AR and summarised using simple descriptive statistics. A draft manuscript was presented to all co-authors who provided feedback which was incorporated into the final manuscript.

The Ethics Committee of the NT Department of Health and Menzies School of Health Research (HREC 2017–3007) approved this research.

A total of 35 interviews were conducted between 3rd March 2021 and the 28th October 2021. During the co-design phase 15 interviews were conducted with leaders who spoke Anindilyakwa, Arrernte, Burarra, English, Kunwinjku, Kriol, Murrinh-Patha, Ngan’gikurunggurr, Pitjantjatjara, Tiwi, Warramunga, Warlpiri and Yolŋu Matha. Perspectives from different language groups ensured representation from diverse communities.

To evaluate the videos we conducted 20 interviews and reviewed social media analytics. Five video presenters, who are also co-authors, shared insights into the production process and perceived impact of the videos: Burarra speaker Charlie, Ngan’gikurunggurr/Kriol speaker Phillip, Yolŋu Matha speaker Rarrtjiwuy and Kunwinjku speakers Jill and Jeanette. 15 interviews were conducted with 10 RDH inpatients and five AHP’s. Inpatients spoke Burarra, English, Murrinh-Patha, Ngan’gikurunggurr, Tiwi and Yolŋu Matha. AHPs spoke Anindilyakwa, English and Yolŋu Matha.

We found that First Nations peoples in the NT had the “wrong story” about COVID-19 vaccines. To address this, we co-designed 16 locally relevant videos in 8 First Nations languages plus English. The videos were perceived to be meaningful because video presenters were trusted by the target audience, Elders were involved, First Nations languages were spoken, and there were opportunities to decolonise the production process. Social media data revealed that sponsored Facebook posts outperformed organic sharing by a significant margin, reaching a much larger audience at an incredibly low cost of just 1.1 cents per person and that despite the rising popularity of YouTube among the target audience, videos shared on a government branded YouTube page had very low impact.

To ensure the results are clear, participants will be given a descriptor alongside their name and language to identify their role in the research as a leader, video presenter, Aboriginal Health Practitioner or RDH inpatient.

Vaccine related confusion and fear: “ the wrong story ”

First Nations leaders said vaccine hesitancy was prevalent in their communities. Many questioned the need to be vaccinated because COVID-19 was not in the NT and asked if the vaccine was being tested on First Nations peoples. Kunwinjku speaker and video presenter Jill said people were getting “ the wrong story ” such as “ if we get that vaccine we might get the number of the beast” . Ngan’gikurunggurr/Kriol speaker and video presenter Phillip said that people worried the vaccine would inject “ some micro tick or some metal into their blood ” or “the COVID infection or virus into their body so that they die.” Anindilyakwa speaker and leader Paul explained that in his community there was a large uptake of the influenza vaccine but people were worried the COVID-19 vaccine had been developed too quickly. Paul said many considered COVID-19 to be a “ White people illness ”. Arrernte speaker Sarah summarised the confusion:

Some of our mob don’t want to get the needles. We are thinking Aboriginal people don’t get it (the virus). (But) if we do get it, it’ll be really bad – it will kill us! Our mob are frightened – our mob watch the news. – Sarah, Arrernte speaker, leader

Due to a lack of trustworthy information, people relied on the news and social media. Ngan’gikurunggurr/Kriol speaker and AHP Phillip said he wanted to counter the misinformation on Facebook with “ positive messages about the COVID immunisation” .

How can we step over that stigma on social media.?…and then my thoughts were like ‘Oh, you know, we should start doing things with language, local people’ . – Phillip, Ngan’gikurunggurr/Kriol speaker, video presenter

Leaders reflected that mainstream health services commonly produce written pamphlets as a means of sharing information however as Warramunga/Warlpiri speaker Patricia said: “ our mob are visual ”. Ideally information would be delivered face to face however leaders also recognised there were limited people to deliver messages across large geographical areas therefore videos that could be shared quickly across large distances was valuable.

Answer the communities’ questions: “ Is the vaccine safe?”

To counter the “wrong story”, First Nations leaders, White clinicians and communication researcher-practitioners worked together to extract pertinent questions from the stories relating to confusion and fear. Five key questions were formulated:

1. Why should I get the vaccine? 2. What is the vaccine? 3. Is the vaccine safe? 4. What will happen when I get the vaccine? 5. What are the side effects?

While the questions had universal relevance the responses developed were tailored to address First Nations perspectives. (see Table 1 ) Considering the large burden of chronic disease in First Nations communities many leaders including Ngan’gikurunggurr/Kriol speaker and video presenter Phillip said information should also specifically address concerns from people with “ chronic diseases, people with renal failure, liver problems and heart problems” .

To ensure information provided was consistent across diverse communities, a two-page briefing document in plain English was produced in a Q and A format. The briefing document was shared with video presenters with an open invitation to contact clinicians if there were unaddressed concerns. Presenters and clinicians both benefitted from subsequent conversations which were often lengthy and occurred more than once. These conversations meant presenters knowledge of the COVID-19 vaccine grew and clinicians gained a deeper understanding of what was happening in communities. Yolŋu Matha speaker and video presenter Rarrtjiwuy explained the conversations with clinicians, which she described as “ authentic” and “ informative ”, helped her feel more confident in sharing the vaccine information. She explained that she wanted the video to provide information to help family “ make an informed decision” . All presenters were adamant the message should not feel forceful and reported that campaigns simply telling people to “get the jab” were sometimes ignored because people felt the message was coercive.

We are not forcing people, we just want to tell the stories. That’s all. Giving out the information from this COVID vaccine so people can understand . – Jeanette, Kunwinjku speaker, video presenter

In deciding what questions to address in the videos, a decision was made not to debunk conspiracy theories or misinformation from religious leaders. The rationale was that the videos should remain relevant for between 4 and 6 months to compliment the NT vaccine roll out. During the pandemic, “fake news” was emerging daily so attempts to address each idea would have resulted in outdated videos in a short span of time. However, this decision meant that AHPs Natalie, Deborah and Ashley questioned how the videos were co-designed:

Has anyone been out to the communities to ask them what their real concerns were? Um, because some of the ones that I’ve got is they don’t have any concerns because of their strong belief in religion which is going to protect them . – Deborah, English speaker, AHP

Additionally, during the vaccine rollout, the risk of blood clots associated with the AstraZeneca vaccine became apparent. Again, AHPs questioned why this time-specific issue was not addressed. Researcher field notes reveal the team discussed adding detailed information to address the risk of blood clots but decided to only briefly address the issue as per Table 1 . This decision was made for two reasons: firstly, blood clots were only associated with one of two vaccines available at the time, the AstraZeneca vaccine, and TGA guidelines banned the use of vaccine brand names in information resources. Secondly, due to distribution issues most people in the NT were offered the Pfizer vaccine which was not linked to blood clot risks.

Locally relevant vaccine resources: “ make the messages meaningful ”

Between 24 March 2021 and the 9 May 2021, 15 COVID-19 vaccine videos in eight languages were published in just over 6 weeks. Production delays meant a 16th video in Arrernte was published on 31 August 2021. The video presenters were employed variously as health professionals, in health promotion, at language centres as interpreters and storytellers, in the media, at universities, and some were also Elders. In response to the needs of people with chronic illnesses, a long-term renal patient Ms C recorded a video. The video shared information in the briefing document and addressed additional issues, identified by Ms C, who incorporated her own experiences of living with a chronic illness to information about the vaccine. Ms C has passed away and the video was deleted in accordance with cultural protocols.

RDH inpatients recognised the purpose of the video was to provide baseline vaccine information and to encourage people with concerns to visit the clinic. Tiwi speaker and inpatient David said family and friends need to watch the videos so they can learn about the vaccine which will keep them safe from this “ deadly virus ”. English speaking renal patient Katherine watched two English videos and appreciated the message was “ short and sweet and to the point .” She also revealed she was unvaccinated because “ I’m not very well at the moment so I’m just going step by step” but added after watching the video with Ms C she felt more receptive towards the vaccine. However, English-speaking health professional Joanna said the videos were too simplistic. Joanna said the English videos “ won’t work with my family…it’s a bit too, not simple, I think it’s really good but they probably want to ask deeper questions ”. Video presenter Rarrtjiwuy said that while the process and video outputs may not suit every community, she explained there are lessons to be learned from the process undertaken:

It’s not just thinking about education and information sharing as a tick box but actually taking time and effort to make the messages meaningful….and what we should take to government is that ‘one size approach’ isn’t going to work…..It’s not just about developing videos that are going to be helpful for community, it’s also about the right people and the right attitude . – Rarrtjiwuy, Yolŋu Matha speaker, video presenter

We identified four key components that were pivotal to co-designing meaningful messages.

Firstly, the videos were meaningful because video presenters were recognisable through biological and kinship relationships, professional networks and presenters were known to have strong health and cultural values. These relationships meant that the presenters were trusted and could be held accountable in their communities. Tiwi speaking RDH inpatient David commented on the Tiwi video presenter who was an Elder:

I think he’s a respected man and cultured man and he understands about love and caring and sharing stories to the whole community and make sure everyone’s safe in community….speaking in Tiwi, it’s very nice and good .– David, Tiwi speaker, RDH inpatient

English-speaking AHP Natalie said if viewers don’t like the video presenter “ you’re not going to get buy-in with the community” . This was observed by a research team member who was working on the vaccine roll out in a remote community. Field notes documented that one of the videos was shown at an arts centre and afterwards six people went to the clinic to get vaccinated, but the same video with the same leader was shown to another artist who said: “ I hate that man, he’s done nothing for me, I’m not getting vaccinated ”.

Yolŋu Matha speaker and video presenter Rarrtjiwuy said a strength of the videos was that they were personalised unlike the “ generic ” government messages: “ I think it needs to be personalised….they’re making a connection to a real person rather than a cartoon” . AHPs commented that creating videos with real people, not animations, allowed hearing-impaired viewers to lip read.

To further localise the videos, overlay images included video presenters being vaccinated and landscapes associated with each language group. RDH inpatient Katherine said that seeing images of presenters being vaccinated demonstrated the vaccine was “ safe to get ” and inpatient David said images featuring local landscapes relevant to language groups gave people “ a clue” that the video was relevant to them.

For many of the leaders the decision to appear in the videos was complex. Leaders who agreed to work on the videos explained they did so because they were worried family would die if COVID-19 took hold in their community. Burarra speaker and video presenter Charlie said if COVID-19 spread through his unvaccinated community of Maningrida “Family will pass away, then the next family, then next family….” . Some leaders, who were involved in identifying reasons behind vaccine hesitancy, declined to appear in videos because COVID vaccination was considered controversial. Similarly, First Nations leaders at Menzies School of Health Research advised trainees against recording vaccine information fearing the young people may experience a backlash. Kunwinjku speaker and video presenter Jill explained the responsibility: “you have to be strong…to give true messages to people ”. Jill, an Elder, worried some people might not listen to her: “Maybe they’re thinking….‘Oh, this woman didn’t work at the clinic’ or ‘She’s not working at the clinic, why does she come, telling us this and that?’ . However, Jill and Jeanette decided to record information because at the time of the vaccine roll out there were no health workers at the local clinic who spoke Kunwinjku and they wanted to ensure their families had been provided with evidence-based information, in their own language, so they could make an informed choice.

Secondly, the co-design process included Elders. Presenters used the briefing document to supply information to Elders, educators and linguists who translated information. Before recording their videos, Jeanette and others from the Bininj Kunwok Regional Language Centre reviewed their English to Kunwinjku translation with Elders “two or three times” to ensure they were sharing the “true message ” before recording. Phillip described translating the document and testing the validity of his message on Elders:

And then I read to them what I wrote up and whatever I said in language without showing them what the script was…..And I wrote it in my language. And then they said, ‘Yeah, no, that’s good’ but then they changed some words for me . – Phillip, Ngan’gikurunggurr/Kriol speaker, video presenter

Rarrtjiwuy said “we make decisions that are agreed as a group, not as an individual person.” She explained the value of working with her grandmother, Rosemary Gundjarrangbuy:

To have a Yolŋu Elder in the room bouncing off ideas…talking about the respectful way to ask and answer those questions….that was awesome . – Rarrtjiwuy, Yolŋu Matha speaker, video presenter

Before distribution videos were reviewed by the video presenters, Elders and clinicians. Messages recorded in First Nations languages were reviewed by independent language speakers who translated the message back into English. The back translation was then reviewed by clinicians to ensure the information was clinically correct.

Thirdly, messages were meaningful because respectful verbal and body language was used. Kunwinjku speaker Jeanette said translated messages meant “ people can hear the straight message ”. Sharing information in languages made it easier for the audience because the medical concepts had already been considered and interpreted. This removed the burden placed onto the audience when information is in English:

Those videos have provided stories and messages in a way that people can articulate and comprehend easily because it’s in Yolŋu Matha. So, they don’t have to think about and make an assumption ‘Oh, does this word mean this?’. You know, everything’s done in the practice of having a normal conversation which is what we really wanted . – Rarrtjiwuy, Yolŋu Matha speaker, video presenter

Some video presenters spoke multiple languages and chose which language was most appropriate to use. Burarra speaker and video presenter Charlie explained that in his community nine languages are spoken: “ I’m going to go talk to this mob from my language group here and then I pass it on to another bloke and then he spoke to his language, you know, his tribe ”.

The videos also contributed to language revitalisation. Phillip spoke Kriol, Ngan’gikurunggurr and English but chose to record the message in Ngan’gikurunggurr to keep the “language going ”. RDH inpatient and Ngan’gikurunggurr speaker Melissa said she felt “ happy” and “ proud” to see her uncle Phillip share information in her language. Phillip shared that his Aunty, one of a few remaining fluent speakers, was overwhelmed with pride which resulted “ in tears ” when he said he wanted to record vaccine information in Ngan’gikurunggurr:

She was emotional but like happy…She was thinking ‘I’m glad this language is not dying’. And we’re not only putting the COVID message out but it’s an educational tool too for keeping the language going . – Phillip, Ngan’gikurunggurr/Kriol speaker, video presenter

Beyond words, video presenters also displayed the same communication norms as viewers. Yolŋu AHP Emma explained that effective communication includes relationships, tone of voice and body language:

Sometimes you have to…talk to them safe way. Not talk to make them scared because sometimes that client or Yolŋu person can feel scared when the balanda (White) person like nurses can talk to make them, scared in their own voice. But in Yolŋu you talk in language so they feel comfortable, so they can know you and they are related to you. Yo (yes). And you can just talk to them in language but slowly. They don’t feel any fear . – Emma, Yolŋu Matha, AHP

As an AHP with access to reliable information, Emma said she didn’t learn anything new from the Yolŋu Matha videos but hearing the information in her first language was helpful because it confirmed what she had learnt in English. English-speaking AHP Deborah said that she had observed language speakers watch a video in English and then the same video in their own language to “ make certain that this story is being told same ”.

AHP’s Natalie, Deborah and Ashley said they were disappointed there was no video in Kriol, one of the largest language groups. They were also critical of the English videos which they thought were overly scripted. AHP Deborah said plain English was required: “ everyday man’s language. Not the big medical jargon.” Deborah also said that presenters needed to speak “ from the heart ” and “improvise a little bit. Put a little bit of your soul into what you are talking about.” The group of AHPs also said clinician Dr Jane Davies, the only White person to feature in the videos, was appropriate because she was known to AHP’s and patients through her work in communities. English-speaking AHP Natalie said, “Dr Jane, she’s deadly! She explains things thoroughly and simply.”

Finally, the format of how information was presented in the video was decolonised by some of the video presenters. Seven presenters delivered the message as an individual direct to camera which is in line with White communication norms. However, three groups chose a different approach. Three groups recorded a Q and A with clinician Dr Jane. Media personality Charlie King explained because he was not a COVID-19 vaccine expert he was more comfortable asking questions of the expert and supporting their message. The Kunwinjku and Yolŋu Matha leaders also chose the Q and A with clinician Dr Jane answering questions (refer to Table 2 ). The videos featured an Elder and an emerging leader who together asked questions of the clinician. The Kunwinjku recording was done in English and after BKRLC workers recorded the voice over translation which was overlayed. The Yolŋu Matha video was recorded in Yolŋu Matha and English in real time. Yolŋu Matha speaker and video presenter Rarrtjiwuy asked questions of the clinician in English and then Rarrtjiwuy and her grandmother Rosemary discussed the answer in Yolŋu Matha. Rarrtjiwuy said the complicated topic required numerous perspectives: “ COVID is new, COVID is the unknown, COVID is something that we’re all discovering together and that you know, requires multiple lenses.” This decolonised approach to presenting information also meant that instead of the messages being short and direct as seen in mainstream health campaigns, these videos were lengthy. The Q and A format resulted in three videos in Kunwinjku and five in Yolŋu Matha and the average duration of each video was 5 min.

After watching a selection of videos, RDH inpatients did not express a preference for the Q and A format, or the message delivered direct to camera. English speaking AHPs including Deborah said she preferred the Q and A in English with leader and media personality Charlie King and clinician Dr Jane because it wasn’t “just a blurb. Some of the questions that were asked were actually, ‘Yes! That’s my concern.’ And they’re getting an answer.”

The videos were a “ stepping stone ”

Presenters became trusted sources of information after co-designing and recording the videos. Phillip described the video as a “ stepping stone” to face to face conversations. Vaccine knowledge gained from the co-design process was shared with family and resulted in confidence in the vaccine. Philip said the Elders and linguists he consulted “ were the first ones at the clinic the first day that it was going to be delivered…after them there was heaps of people….all lined up for their first jab. No questions about it.” Kunwinjku speaker Jeanette said that before the videos were published she shared her new knowledge with family who then got vaccinated: “ My elder sister she got it, my sister-in-law and two girls, my nieces.”

Rarrtjiwuy reported that Yolŋu recognised her from the videos and asked her to explain the vaccine at the shops, over the phone or during ceremonies: “when it’s the right space and time to provide education” . Rarrtjiwuy also said the videos did not generate negative feedback across her communities:

I’m a frequent flyer across north-east Arnhem land, I’ve not had one Yolŋu person come to me and say ‘the videos you did were shit’ or they, you know, ‘they’re forcing people’…I have not have any negative feedback .- Rarrtjiwuy, Yolŋu Matha speaker, video presenter

Video distribution supported through partnerships

Videos were distributed via ACCHO’s, Aboriginal Hostels Limited, Bininj Kunwok Regional Language Centre, Children’s Ground, the federal Indigenous Policy and Engagement advisory group for the COVID-19 response, Menzies School of Health Research, Miwatj Aboriginal Health Corporation (Miwatj Health), NT Health, NT Primary Health Care Network, Thamarrurr Aboriginal Corporation, a NT politician and video presenters. Stakeholders shared videos on social media, websites and TVs in clinics, hospital waiting rooms and shops. The videos were also uploaded to NT Health electronic tablets which meant frontline staff could show videos during the vaccine roll out. Miwatj Health proactively distributed videos. All five Yolŋu Matha videos were on rotation on TVs at seven Miwatj clinics. Additionally, all videos were posted on Facebook twice (approximately one month apart) and shared from the Miwatj Facebook page to six Yolŋu targeted community notice boards with over 16 thousand followers combined. Two stakeholders sponsored Facebook posts. Local politician, Warren Snowden, sponsored 15 videos for one month per video (excluding the Arrernte video due to production delays) at a cost of $4510 on their Facebook page. These sponsored posts geo targeted language speakers. NT Health spent $3852.24 to sponsor one Kunwinjku, Yolŋu Matha, Ngan’gikurunggurr, Murrinh-Patha and two English videos for between 7 and 14 days.

The sponsored “English Q and A” was the most-accessed video with nearly 200,000 impressions across all platforms followed by Tiwi, Yolŋu Matha and Burarra videos (Fig. 1 ). These figures did not correlate with numbers of language speakers (Fig. 1 ). Perseverance with watching the content (views) was greatest for Murrinh-Patha then Yolŋu Matha videos (Fig. 1 ). However, some analytics from Facebook community notice boards where Miwatj Health shared Yolŋu Matha videos were unavailable, so data from this most commonly spoken language are likely to be underestimates. Indeed, engagement (user interaction with the post), for which data were available across all videos, was highest for Yolŋu Matha (Fig. 2 ). Despite Ngan’gikurunggurr being a minority language (~25 speakers), this video attracted 61,111 impressions, 16,744 views, 242 engagements and had a reach of 16,744. Of note, Miwatj Health reposted all five Yolŋu Matha videos a second time (13–19 April 2021) one month after the initial posting (26 March 2021). Reposting prompted further interest with an overall 74% increase in reach across the five videos: reach was 970 arising from the first post and 1687 arising from the second post.

Reach, impressions and views of COVID-19 vaccination information videos by language, with estimated numbers of speakers per language.

Engagement (user interaction) with video on social media platforms by language.

Sponsored Facebook posts had substantially greater reach and impressions than organic Facebook posts. For example, the “English Q and A” was posted on Facebook, Twitter and LinkedIn. Data for this video was captured from 25 March 2021 – 01 July 2021. During this time NT Health sponsored the video on Facebook for 7 days (Cost: $1000. Date: 27/03/21-03/04/21) and the parliamentary member sponsored the video for one month (Cost: $600. Date: 26/05/21-25/06/21). Organic posting on the NT Health Facebook on 27/03/2021 resulted in reach of 5826 while the sponsored posts on both Facebook pages (NT Health and the politician’s) resulted in reach of 143,653, giving a cost per person reached of 1.1 cents (calculated as $1600/143,653).

Comparing platforms, videos were most accessed via Facebook boosted by sponsorship (total 784,046 impressions), followed by Twitter (32,069 impressions), Vimeo (7880 impressions) and LinkedIn (5215 impressions). YouTube data were not comparable as number of impressions were not available, with 645 total views for 15 videos. The federal government’s indigenous.gov.au was the only stakeholder to share videos on YouTube. The “English Q and A” which was the most popular video on other platforms only received two views over 3 months on the government YouTube page.

Despite attempts at wide distribution through social media networks and in locations where the target audience would be, only two of 10 RDH inpatients had seen the videos before they were approached for feedback. Murrinh-Patha speaker and RDH inpatient James and Burarra speaker and inpatient Michael both saw the videos on TV screens in the RDH foyer. James also saw the video on a TV screen at a local shop in his community of Wadeye. James watched the video a few times: “I didn’t really know about that vaccine….That’s why I kept watching it on the screen, on the big screen down at the shop ”. AHPs Natalie, Deborah and Ashley suggested the younger generation should be targeted with Tik Tok content.

This PAR project countered the “infodemic” spreading through the NT by co-designing 16 COVID-19 vaccine videos with First Nations leaders. The videos provided evidence-based information in eight First Nations languages plus English. Our findings are relevant to communication practitioner-researchers and health professionals who co-design resources with marginalised populations in jurisdictions outside of the NT. We learnt that the videos were effective because real people, not animations, could personalise information; presenters were trusted by, and accountable to, the target audience and First Nations languages were spoken. The co-design production process meant that presenters controlled the style in which information was delivered (direct to camera or Q and A with leader and expert); included time for presenters to consult with Elders on how best to localise messages for each community and time with clinicians to ensure the deeper story about vaccination was understood before recording began. These conversations also enhanced the clinician’s knowledge of community perspectives on vaccination. Importantly, we learnt that the video message should not simply instruct people to get vaccinated but instead individuals wanted to be empowered with information to make an informed choice. Our findings also contribute to the evidence that responding to conspiracy theories and “fake news” is limited; instead, the focus should be on building relationships that build trust between mainstream health services, that perpetuate systemic racism, and First Nations communities. Regarding social media we found that sponsoring posts was a sound investment; strategic reposting led to higher reach during critical events when demand for reliable information increased; and video reach didn't always align with language population size, suggesting other factors at play. Below our learnings are discussed in detail.

First Nations leaders, who were accountable to and therefore trusted by communities, featured in the videos. Trust is the cornerstone of effective communication. (Kerrigan et al., 2021 ; Ramsden, 2002 ; Topp et al., 2022 ) The leaders were best placed to deliver information because they understood, and shared, the historical, social, economic and political pressures which have contributed to vaccine hesitancy. (Kelly & Barker, 2016 ; Lazić & Žeželj, 2021 ; Stanley et al., 2021 ) Additionally, leaders acted as a bridge between family and friends and healthcare service providers who may not be trusted due to a history of racist medical practices in which First Nations people were experimented on. (Mayes, 2020 ; Mosby & Swidrovich, 2021 ) The possibility of being held to account meant some leaders did not want to be an “information intermediary” (Seale et al., 2022 ) between health services, which have been used as an apparatus of control, (Bashford, 2000 ; Bond, 2018 ) and their communities. In this project, video presenters understood the risks and shared information because they recognised the potential loss of life if reliable information was not urgently supplied. (Connolly et al., 2021 ).

The videos featured real people and elevated voices that had been further marginalised by the pandemic’s “infodemic” which was dominated by White voices. Health promotion campaigns for First Nations communities are commonly animated with an anonymised voice-over however animated characters cannot be held to account. Additionally, hearing impaired people cannot lipread animations. This is an important consideration as 43% of First Nations peoples experience hearing loss. ( Australian Institute of Health and Welfare ) Therefore, we argue animations have limited impact and should be reconsidered as a favoured format. (Meppelink et al., 2015 ).

To counter the “wrong story,” information must be delivered in First Nations languages. Although information does not necessarily need to be delivered in the most widely spoken languages. In this project, presenters chose which language was most appropriate for their community. The pandemic was concerning to First Nations peoples globally who feared minority languages could be lost with the death of Elders who were the last fluent speakers. (Connolly et al., 2021 ) In video presenter Phillip Wilsons’ community of Nauiyu there were 10 language groups: a legacy of missionaries who forced people off their country to the mission site. (Morris et al., 2022 ) Phillip spoke both Ngan’gikurunggurr which had about 25 speakers and Kriol which had over 7000 speakers. (Australian Bureau of Statistics, 2022a ) The Ngan’gikurunggurr video was a huge source of pride, immortalised the minority language and Elders who spoke Ngan’gikurunggurr became vaccine champions which had a flow-on effect throughout the community when the vaccine was distributed.

The videos were also successful because the co-design production process included time for video presenters to consult with community leaders and Elders who contributed to crafting the message. Effective dissemination of health information amongst First Nations language speakers during a pandemic requires more than translating a script from English and using anonymous interpreters to deliver a message.(Crooks et al., 2020 ; Kerrigan et al., 2020 ; Stanley et al., 2021 ) Our results support the argument that attempting to “deposit” people with information, or instructing them to ‘get the jab’, and expecting them to comply as per the traditional medical model of communication does not lead to behaviour change. (Freire, 1970 ; Marteau et al., 2015 ; Wild et al., 2021 ) To achieve health equity people require time to have conversations with trusted individuals in a supportive environment and access to information they have identified as important so “they are able to take control of those things which determine their health.”(World Health Organisation, 21 November 1986 , p.2) Our goal was to facilitate collective knowledge production which involved cycles of knowledge exchange that occurred before, during and after the videos were recorded. During co-design and video production stages, the video presenters and clinicians established relationships. These relationships meant video presenters could contact clinicians with questions which arose from conversations during daily interactions in communities. (Wild et al., 2021 ) This was vital because the presenters were recognised from the vaccine videos and approached by people who wanted more information. For decades First Nations peoples have requested the “deep” story regarding health issues (Armstrong et al., 2022 ; Brennan, 1979 ; Devitt, 1998 ; Lowell et al., 2021 ) and these relationships, created through the co-design process, contributed to the deeper story being provided at an appropriate time and place for families. These conversations also deepened clinician’s knowledge of barriers and enablers influencing vaccination uptake in communities.

The flexibility embedded in the culturally responsive production process was vital. Decisions regarding healthcare, in many parts of the world, are made by families not individuals. (The Lancet 2022 ) The briefing document was supplied to presenters who honoured relationships with Elders and family by prioritising time to discuss information before video production began. (Armstrong et al., 2022 ; Burarrwanga et al., 2019 ; Lee, 2013 ) The aim of the briefing document was to ensure some uniformity of the clinical message across language groups to limit the possibility of contributing to the “infodemic”, but it also left room for communities to adapt the message to suit local contexts. This flexible approach improves communication strategies during a pandemic. (Ratzan et al., 2020 ) Many video presenters also chose to present the information as a conversation that included Elders and a clinician; the most effective way to improve vaccine uptake is to provide information in a “socially and culturally normative manner”. (Lazić & Žeželj, 2021 , p.657) Additionally, the combination of leader and expert, used in the Yolŋu Matha, Kunwinkju and English videos has been found to be the most effective way to counter conspiracy theories. (Lazić & Žeželj, 2021 ).

Despite these successes, our results also show some dissatisfaction with the videos. First Nations health professionals were critical of some content and wanted presenters to personalise the information. Personal narratives can improve the effectiveness of COVID-19 public health campaigns compared to official impersonal guidance from health authorities. (Solnick et al., 2021 ) AHPs also questioned why risks associated with blood clots and religious concerns were not addressed. As documented in Table 1 , information relating to blood clots was included however it was not detailed for reasons explained. Regarding religious concerns: we recognised that attempts to debunk misinformation “can only go so far” (Ball & Maxmen, 2020 ) and that “fake news” spreads amongst individuals who distrust health services. (Lazić & Žeželj, 2021 ; Rogers & Powe, 2022 ) Therefore a decision was made to attempt to build bridges between health services and communities by working with respected leaders. (Ball & Maxmen, 2020 ).

Video distribution relied heavily on Facebook which can be simultaneously harmful and also a safe space where First Nations peoples access culturally relevant health information. (Carlson et al., 2021 ; Hefler et al., 2019 ) We found Facebook continues to be popular among First Nations peoples however social media quickly evolves and content creators should respond to trends such as Tik Tok. (Carlson et al., 2021 ; Frazer et al., 2022 ) In Australia, Facebook is the most popular platform (67%) closely followed by YouTube (61%). (Park et al., 2021 ) Therefore an unexpected finding was the low numbers related to the indigenous.gov.au YouTube videos. The results may be attributed to the government branding of the YouTube page which could be a deterrent for First Nations peoples who continue to experience discrimination due to government policies which perpetuate harmful colonial ideals. (Elias et al., 2021 ; Watego et al., 2021 )

Unsurprisingly, sponsored Facebook posts had the largest impact. The reach of sponsored Facebook posts was substantially greater than that achieved through organic sharing, for a very low cost per person (1.1 cents). In comparison to television advertising, sponsored Facebook posts are an inexpensive way to disseminate health information. (Allom et al., 2018 ) Interestingly video reach was not in proportion to language population size. The most popular videos in First Nations languages were Tiwi, Yolŋu Matha, Burarra, Kunwinjku, Ngan’gikurunggurr, Murrinh-Patha, Arrernte and Warlpiri; the descending order of language size is Yolŋu Matha, Arrernte, Warlpiri, Tiwi, Murrinh-Patha, Kunwinjku, Burarra, Ngan’gikurunggurr (Fig. 1 ). (Australian Bureau of Statistics 2022c ) This may reflect differences in timing of video release in relation to vaccine rollout; use of social media platforms in different communities; internet access; and popularity of video presenters.

Another surprising finding was that video content can be effectively reused on Facebook. This overturns the myth among communication practitioners that content can only be used once. When Miwatj Health reposted the same five Yolŋu Matha videos one month after the initial posts the reposted videos had higher reach. Reposting the videos appeared to have been strategically timed to counter a frenzy of media activity in relation to AstraZeneca-associated blood clots and to support the start of the Miwatj Health vaccine rollout. (ABC News, 8 April 2021 , 15 April 2021 ) These two events may have contributed to Yolŋu searching for trustworthy information and the subsequent larger impact.

Regarding study limitations, gathering social media analytics from stakeholders was troublesome. Not all stakeholders supplied data therefore numbers may underrepresent impact. In this research, the unreliability of social media data was countered by qualitative data. When the COVID-19 virus arrived in the NT in late 2021 the collaborations established as part of this PAR project resulted in an additional eight videos in eight languages which addressed community concerns relating to the ongoing “infodemic” plus questions regarding vaccines for children and boosters. As per feedback from the AHP’s in this study, a video in Kriol was created. The impact of those videos has been briefly described in The Lancet. (Kerrigan et al 2023 ) Finally, we recognise the limitations of a video to address the complexities relating to the pandemic and infodemic and accept that video resources are only one part of the strategy required to achieve public health goals. (Kelly & Barker, 2016 ).

This project serves as a valuable model for co-designing effective health communication resources with marginalised populations. By collaborating with trusted community leaders, speaking in local languages, and adopting a culturally responsive approach, the videos successfully countered the “wrong story” and built trust between health services and First Nations communities.

Developing public health communication strategies during a pandemic is challenging. We argue that the one size fits all approaches commonly used in public health can easily be refined so that information is meaningful, relevant and culturally appropriate. Resources need to grow from communities, not be imposed from subjugating authorities as per the top-down approach to health communication that has traditionally been favoured by health professionals. The project’s broader impact lies in its contribution to the evidence that successful health communication necessitates a shift in power dynamics. White individuals and mainstream service providers should step back from controlling the narrative and support the creation of resources that meet end-users needs. In this way, health communication can become more inclusive, relevant, and effective.

Ultimately, the project contributes to the broader evidence that successful health communication requires a focus on relationship-building, which fosters trust between healthcare providers and First Nations peoples. The trust built through the co-design is more important and enduring than the videos themselves, which are now out of date. Our project serves as a model for effective health communication that prioritises relationship-building, trust, and co-design, leading to more meaningful and equitable health outcomes.

Data availability

Data from the study are not publicly available due to ethical considerations. Data may be available from the corresponding author on reasonable request.

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Acknowledgements

The authors would like to thank the First Nations leaders and Elders who contributed but were not co-authors: Larissa Meneri & Purina Anderson from Children’s Ground, Larrakia Elder Aunty Bilawara Lee, Charlie King, Ms C, William Parmbuk, Tiwi Elder Maralampuwi Kurrupuwu, Yolŋu Elder Rosemary Gundjarrangbuy and Warlpiri Elder Theresa Napurrurla Ross. We would also like to thank Andy Peart from Bininj Kunwok Regional Language Centre, Mel Kean from Children’s Ground, Danielle Green from Formation Studios, Seide Ramadani from Mala’la Health Service, Paul Lawton, Angela Kelly and Josh Francis from Menzies School of Health Research.

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VK, CR, PMW and JD conceived the project in consultation with all authors. All authors contributed to study design and implementation. VK, DP, CR, WT, AR and JD collected data. VK, DP, CR and APR conducted analysis. VK drafted the manuscript with input from all authors. APR prepared Figs. 1 and 2 . All authors read and approved the final transcript and agreed to be accountable for all aspects of the work. This project was funded by a Menzies/ National Critical Care Trauma Response Centre COVID-19 Health Emergency Preparedness and Response Grant 2021. Vicki Kerrigan was supported by an Australian Government Research Training Program Scholarship and Improving Health Outcomes in the Tropical North: A multidisciplinary collaboration (HOT NORTH)’, (NHMRC GNT1131932). Anna P Ralph was supported by an NHMRC fellowship 1142011. Jane Davies was supported by an MRFF EL2 Investigator Grant (MRF1194615).

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Kerrigan, V., Park, D., Ross, C. et al. Countering the “wrong story”: a Participatory Action Research approach to developing COVID-19 vaccine information videos with First Nations leaders in Australia. Humanit Soc Sci Commun 10 , 479 (2023). https://doi.org/10.1057/s41599-023-01965-8

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Original research article, displacement of the scholar participatory action research under covid-19.

• 1 School of Natural and Built Environment, Faculty of Engineering and Physical Sciences, Queen's University Belfast, Belfast, United Kingdom
• 2 Department of Geography, College of Arts and Sciences, The University of Tennessee, Knoxville, Knoxville, TN, United States
• 3 School of Geographical and Earth Sciences, University of Glasgow, Glasgow, United Kingdom
• 4 Lozano Long Institute of Latin American Studies, University of Texas at Austin, Austin, TX, United States
• 5 School of Geography, Earth and Environmental Sciences, College of Life and Environmental Sciences, University of Birmingham, Birmingham, United Kingdom
• 6 School of Planning, Bartlett Faculty of the Built Environment, University College London, London, United Kingdom
• 7 Department of Geography and Anthropology, Kennesaw State University, Kennesaw, GA, United States
• 8 Center for Community Engagement to Advance Scholarship and Learning, University of Denver, Denver, CO, United States
• 9 School of International Service, American University, Washington, DC, United States
• 10 Institute for Resources, Environment and Sustainability, Faculty of Science, University of British Columbia, Vancouver, BC, Canada
• 11 Countryside and Community Research Institute, University of Gloucestershire, Cheltenham, United Kingdom

The impact of COVID-19 on conducting research is far-reaching, especially for those scholars working for or alongside communities. As the pandemic continues to create and exacerbate many of the issues that communities at the margins faced pre-pandemic, such as health disparities and access to resources, it also creates particular difficulties in collaborative, co-developed participatory research and scholar-activism. These forms of community engagement require the commitment of researchers to look beyond the purview of the racialized capitalist and neoliberal structures and institutions that tend to limit the scope of our research and engagement. Both the presence of the researcher within the community as well as deep community trust in the researcher is required in order to identify and prioritize local, often counter-hegemonic forms of knowledge production, resources, and support networks. The pandemic and similar conditions of crises has likely limited opportunities for building long-term, productive relationships of mutual trust and reciprocity needed for PAR while communities refocus on meeting basic needs. The pandemic has now not only exacerbated existing disparities and made the need for engaged, critical and co-creative partnerships even greater, it has also abruptly halted opportunities for partnerships to occur, and further constrained funds to support communities partnering with researchers. In this paper we highlight accomplishments and discuss the many challenges that arise as participatory action researchers are displaced from the field and classroom, such as funding obstacles and working remotely. An analysis of experiences of the displacement of the scholar exposes the conflicts of conducting PAR during crises within a state of academic capitalism. These experiences are drawn from our work conducting PAR during COVID-19 around the globe, both in urban and rural settings, and during different stages of engagement. From these findings the case is made for mutual learning from peer-experiences and institutional support for PAR. As future crises are expected, increased digital resources and infrastructure, academic flexibility and greater consideration of PAR, increased funding for PAR, and dedicated institutional support programs for PAR are needed.

Introduction

COVID-19 has been particularly effective at exposing and exacerbating inequality and injustices ( Dorn et al., 2020 ). Widening disparities in access to food, healthcare, and housing have resulted in increased rates of malnourishment and homelessness, and exposed the classist, patriarchal, racialized and racist structures that often produce and maintain these disparities. Rates of hunger are doubling around the world, even in wealthy countries like the U.S., where many communities continue to experience food insecurity. Income and wealth inequalities have likewise grown and exacerbated the commodification and financialization of housing resulting in increased housing precarity and homelessness. Meanwhile, the climate crisis also continues to worsen and wreak havoc in many parts of the world, producing new forms of precarity and uncertainty in some neighborhoods, while others already on the edge become more vulnerable.

Community resilience to crises is rooted in deep and trusting relationships and ecological knowledge ( Gómez-Baggethun et al., 2012 ; Aldrich and Meyer, 2015 ), and the COVID-19 pandemic has been particularly effective at disrupting and fracturing relationships, thereby challenging sources of community trust and resilience. As people have been required to quarantine or reduce movement outside, many have been isolated and displaced from their everyday lives, their communities, coworkers, and their families and friends. Scholars are no exception, and have also been displaced from their classrooms and students, along with their field sites and their research. This scholarly displacement is particularly salient with scholar activists and those involved with participatory action research (PAR) ( Muñoz et al., 2021 ). The displacement of the activist-scholar comes at a time when there is dire need for more action-research scholarship that centers on the knowledges and experiences of those communities on the frontlines of ecological, economic, and health crises—all raging in the wake of COVID-19 and other on-going crises, such as anthropogenic climate change. Yet, although inequalities and injustices laid bare under COVID have intensified activism in some instances around the world ( Mendes, 2020 ; Marshburn et al., 2021 ), PAR has been significantly hampered during COVID-19. In other words, impacts of the pandemic have added urgency to the issues that communities are facing, while hindering relationships between the scholar and community, and disrupting PAR methodologies for many communities and researchers alike. The dynamic and collaborative nature of PAR and the sheer logistical challenges that come with community-based research have also become more difficult during the pandemic.

Another challenge to PAR scholars that has been exacerbated by the COVID-19 crisis is the increasing neoliberalization of academic institutions. Over the last several decades, research and higher education models have been restructured toward privatization and commercialization, with focus on generating revenues, and managing professionals ( Jessop, 2017 , 2018 ). This restructuring has inserted universities as players in the marketplace blurring the limits “between universities, the state, the non-profit sector, and the market” ( Brackmann, 2015 , p. 120; see also Rhoades and Slaughter, 1997 ; Münch, 2014 ). Similarly, market-oriented financial practices have transformed the ways in which universities and academic institutions engage with communities and the emphasis given to community-based projects, outreach and research. Neoliberalization has also formalized who can participate in these spaces of learning and how knowledge production occurs, with emphasis on knowledge as an economic asset and measured through quantitative metrics often in the form of number of publications and citations ( Jover, 2020 ).

Within this model, the significance of a college education has shifted from the promotion of a liberal arts education to one focused on preparing students to be “job-ready” upon graduation. As such, although service learning and community outreach programs have become increasingly commonplace in higher education institutions, they are often seen as a form of “professional development”, used to enhance the college experience and help prepare students for the “real world”, despite the narrative emphasis on “community” and “engagement” ( Cantor et al., 2014 ; Holley and Harris, 2018 ). This practice recalls the history of using communities as “learning labs”, where it was uncritically assumed that by sending out students to “do good”, community benefits would be accrued. As such, community engagement and PAR, centered on cultivating genuine forms of co-production of knowledge and when done well, 1 are often at odds with the capitalist model of commodified education and knowledge production. The values of solidarity and social justice that underpin PAR methodological approaches often conflict with and challenge economic priorities and neoliberal structures now increasingly promoted by academic institutions ( Brackmann, 2015 ).

While academic institutions continue to support PAR scholars in a number of ways, there is concern that this continuing shift toward academic capitalism and neoliberal restructuring limit opportunities for meaningful and radical collaboration between universities, researchers and communities ( Ozias and Pasque, 2019 ). These concerns are particularly relevant now, under COVID-19, which has challenged social and economic structures at all levels. How the COVID-19 crisis is exacerbating structural issues in the academy has begun to be identified in the literature, pointing to the emerging evidence that shows that the “coronavirus pandemic has (re)produced further academic inequalities,” at all scales, particularly for early career academics ( Davies et al., 2021 , p. 3). There has been less engagement however, with the “intersection of community engagement and neoliberal policies, practices, and logics” ( Brackmann, 2015 , p. 116), which the current crisis is also affecting.

Drawing on our own experiences as PAR scholars under COVID-19, this paper reflects on the challenges and opportunities of doing PAR work during a pandemic crisis and lockdown, and the lessons learned during this period. The authors of this paper conducted a shared analysis of our nine PAR-based case studies during the COVID-19 pandemic to elucidate a range of experiences, including the institutional barriers and supports that impacted our work with and for the community. More specifically, we reflect on our displacement from these communities, the reliance on digital methodologies, and the role of the university in supporting PAR and promoting community engaged research and projects during the pandemic and within academic capitalism. Through this reflection on our experiences we identify and explore: (1) the temporalities of the impacts of the pandemic on PAR and (2) the academic institutional factors that have shaped PAR during the pandemic. The PAR projects included here showcase the strengths and weaknesses of working remotely and the impacts of the pandemic on the scholar. Not only has COVID-19 highlighted how PAR and scholar activism are more relevant and necessary than ever before, but it has also highlighted the need for broader academic and institutional support in anticipation of future crises.

PAR Under Academic and Racial Capitalism

Over the last decades, research and higher education models have been restructured toward economic interests through privatization and commercialization, with a focus on generating revenue, and producing professionals for the market-place ( Jessop, 2017 , 2018 ). A growing body of literature across disciplines has engaged with this restructurating, identifying the emergence of “academic capitalism” which portrays the advancement of entrepreneurial models in education and research, as well as the reduction of public resources ( Rhoades and Slaughter, 1997 ; Slaughter and Leslie, 2001 ). This shift has resulted in new intermediating organizations that foster market-like behaviors, expand managerial capacity, and create new circuits of knowledge tied to capitalist logics ( Metcalfe, 2010 ; Jessop, 2017 ). Community engagement and PAR—which are centered on cultivating forms of co-production of knowledge that critically address socio-economic hierarchies and promote values of solidarity and social justice—are often at odds with the commodified model of education and knowledge production ( Brackmann, 2015 ).

These structural issues emergent with academic capitalism have long been highlighted and challenged by Indigenous and Black scholars in both the decolonial and Black Radical Tradition. Robinson (1983) , in his influential work on the Black Radical Tradition, coined the term “racial capitalism” to argue that capitalism is inherently racialized, whereas, “Capital can only be capital when it is accumulating, and it can only accumulate by producing and moving through relations of severe inequality among human groups” ( Melamed, 2015 , p. 77). This inequality, vis-à-vis the historical and material structures of colonization, is predominantly based on a patriarchal system and the othering and racialization of specific peoples to support their exploitation. Indigenous scholar Leann Betasamosake Simpson points out that educational systems “are primarily designed to produce communities of individuals willing to uphold settler colonialism” ( Simpson, 2014 , p. 1). Furthermore, universities across the world are often physically built on the stolen land of Indigenous peoples, while historically excluding Black and Indigenous students, and perpetuating an ontology that erases and devalues Indigenous and Black knowledges ( Freire, 1968 ; Robinson, 1983 ; McLaughlin and Whatman, 2011 ; Simpson, 2014 ; Mbembe, 2016 ). These structures perpetuate patriarchal, racialized and colonial harms, which are then exacerbated and furthered by the exploitation of academic capitalism. Arguably, academic capitalism itself is built on the material histories of Black and Indigenous exclusion. These structures of inequality sever relationships by separating scholars from both these communities and their specific sites of knowledge production, hindering potential emancipatory collaborations and research pathways that can challenge these systems.

Gender and whiteness (and white supremacy) are imbricated in capitalism, and academic capitalism is no exception. The struggle against racism, patriarchy and capitalism in academia is longstanding and ongoing. Historically, groups such as women and Black, Indigenous, and other people of color (BIPoC) scholars have been marginalized by the power structures of academia. Domosh (2000) outlines her transgressions of studying “women” as setting her back in terms of the job search. Eaves (2019) reflects on the challenges inherent to examining feminist and gender geographies as well. She states that “our national undercurrent is materialized on stolen land, structured on white supremacy, and rooted in the rise of colonialism, imperialism and capitalist exploitation. That system must be continuously examined, critiqued, and dismantled from multiple analytical frames in order to advance struggles for justice and liberation, which are at the core of inquiry in feminist and gender geographies” (p. 1319).

It is on this foundation that the academy is built. Inequities in the Academy have been called out by many Black, Latinx, Indigenous, and critical scholars who argue that it perpetuates inequalities already present within society ( Domosh, 2005 ; Castañeda, 2018 ; Eaves, 2019 ; Kidman, 2020 ). The pursuit of advanced degrees is expensive, causing students without generational wealth (often stemming from a historical lack of access and privilege) additional stress as they work as underpaid graduate assistants or are forced to self-fund their already under-funded research. Hamilton (2020 , p. 300) recalls the alienation she experienced in a discipline drenched in whiteness and colonialism. She notes that institutional calls to action against racist policing and declarations of solidarity with Black Lives Matter rang as virtue signaling. She refers to geography as “the realm of the white unseen” in reference to this lack of self-insight that the discipline has long practiced, not to mention the violence that the academy perpetuates against people of color, such as the tenure denial of deserving academics, most recently, as in the case of Nikole Hannah Jones at University of North Carolina, Chapel Hill and Cornell West at Harvard University.

In relation to PAR, scholars' connection to underserved, potentially vulnerable, and even invisible communities is not a given. Further, lack of university support for community-engaged work results in a loss of insight about the world that cannot be recouped through the workings of academic capitalism. Oswin (2020) points to a rising solidarity among “Others” that have been harmed by and marginalized by academia even among institutional calls for “diversity”. Losing BiPoC, queer, and women scholars has resounding effects on the very knowledge claims that geography and other disciplines can make.

PAR is about collaborating with the community in all parts of the research (e.g., research design and knowledge production) and this is not compatible with relationships that extract, exploit, and exclude, i.e., supremacist and rigid hierarchical systems. When done well, PAR is directly counter to academic capitalism, and to the dominant power structures of the neoliberal university. It can disrupt formal, and unresponsive systems by challenging how an institution that is not egalitarian can be entrusted to conduct PAR and assist communities. As a result, PAR scholars working within the system often need to fight against internal pressures and funding priorities to have their work recognized, or they risk being displaced. The kinds of knowledge and power, such as local ecological knowledge and social capital, that support community and ecological resilience and regeneration in the face of major crises (e.g., pandemics, earthquakes, hurricanes, economic depressions), are the very kind that PAR scholars from diverse disciplines have practiced for decades, and even during the pandemic ( Macaulay, 2017 ).

The neoliberal university limits those opportunities and the kinds of partnerships and projects that advance social justice and socio-ecological resilience. Declining state support for public services has put pressure on universities to simultaneously espouse a public good mission, and to extract what returns they can through academic capitalism practices ( Rhoades and Slaughter, 1997 ; Brackmann, 2015 ). For example, in the U.S. there are 112 public universities that receive federal funding to benefit society through teaching, research, and extension. While these land-grant universities are tasked with reducing economic and health inequalities, measuring success of faculty and programs only entails counting publications, citations, external funding awards, and patents ( Gavazzi, 2020 ). Additionally, the dismantling of humanity departments and programs, and a shift by the National Science Foundation (NSF) to focus on economics, health, and national defense while stating that “research that is predominantly post-modern, post-structural, humanistic etc. is not a good fit” demonstrate only some of the many restrictions and limitations on research that are currently in place under an academic capitalist model ( Eaves, 2019 ).

James et al. (2021) argue that the COVID-19 pandemic presents an opportunity for a collective stock-taking, in which actors and stake-holders reconsider policy responses and pursue alternative, community-focused approaches. These approaches are essential in addressing issues of equity and power, affecting policy and providing communities with opportunities to contribute to an inclusive process that is cognisant of their needs ( Afifi et al., 2020 ). By embedding ourselves with and within the many social justice movements and struggles, and working in traditionally marginalized communities, many of which have been highly impacted by the pandemic and lockdown, due in part to the failures, gaps or absence of government programs and support, PAR scholars can both contribute to and draw from this crisis moment and the community struggles and demands happening in different parts of the world. Along this same vein, PAR scholars have a unique opportunity to use this moment of crisis to consider research goals, the academic and funding structures within which they do research, and the ways in which our research and teaching roles can further challenge the neoliberal capitalist model. The COVID crisis has created a unique opportunity for people and societies to reconsider their lives. As people and communities leave their jobs, conduct labor strikes, demand social and racial justice, and push for better climate regulations, we in academia can also challenge the increasing neoliberalization of our institutions, and instead demand more accountability and institutional responsibility to the communities and societies in which our institutions are based.

Building Community Resilience in the Face of Crises Through PAR

Building strong interpersonal relationships and high levels of trust with community members is central to scholars undertaking PAR ( Hall et al., 2021 ; Mokos, 2021 ). Participatory action-oriented community-engaged research requires an ethical commitment to the communities with whom we work; we must remain reflexively critical of our positions within the research and the influence of asymmetrical power relations inherent in the relationships we develop ( Mokos, 2021 ). Despite these clear objectives, PAR is inherently messy and complex. Many of us work in communities that have experienced historical and ongoing structural forms of racism, marginalization, poverty and violence. For many communities, experiencing crisis or living with severe precarity and uncertainty was already part of daily life. In these contexts, PAR researchers, as (often) elite outsiders, need time to build relationships, understand community needs and demands, and learn to listen for what might go unsaid.

Crisis events like COVID-19 are shocking disturbances which can put these relationships at risk, lead us to reconsider our positionality in the context of emerging issues, and isolate the researcher from organizations and communities. Despite these challenges, scholars have argued that community-based participatory action research remains one of the most effective ways to conduct research during periods of crisis ( Afifi et al., 2020 ). While important questions must be asked regarding the vulnerability of the groups with which we may be conducting research ( Hall et al., 2021 ), when done well, PAR can engage with vulnerable communities during these periods in order to overcome issues of equity and power ( Afifi et al., 2020 ). Indeed, in many disaster situations communities themselves provide a knowledgeable network able to mobilize and react to the situation they face in effective ways ( Schoch-Spana et al., 2007 ; Cho et al., 2021 ). PAR scholars can both provide support through relationships and partnerships, as well as through knowledge and data production. These relationships can in turn help to improve civic preparedness for disasters by creating opportunities for communities to contribute to preparedness policy and its implementation ( Schoch-Spana et al., 2007 ).

The requirement to remain socially-distant and protect community members presented a significant challenge to building the trust and close collaborations at the core of PAR. To overcome this challenge and continue advancing scholarship requires a sudden reliance on digital technology such as video conferencing to facilitate meetings with community members and organizations, which significantly alters the nature of scholar community interactions. Embracing these innovative methods requires establishing the capacity for both researchers and participants to work with the necessary tools and to give appropriate regard to the ethical and privacy issues associated with the use of such technologies (e.g., Nguyen et al., 2020 ). Hall et al. (2021) have argued that the digital divide is less about a country's wealth and more about the communities whose digital knowledge and usage practices were already less than optimal before COVID-19. This point is further reiterated by Lourenco and Tasimi (2020) who recognize that the COVID-19 pandemic has ushered in a reliance on digital and online measures to gather data and as a result has excluded many different communities.

In these contexts, collective power is built through awareness, reciprocity, and strong relationships of trust that community members create with each other, organizations, scholars and other institutions. Through these practices and partnerships, communities can creatively and cooperatively resource needs for security, belonging, and dignity, and cultivate resilience ( Haines, 2019 ). This is the kind of knowledge and power through which resilient communities have created robust structures of mutual aid, community land trusts, and cooperative enterprise that have operated outside of oppressive, supremacist power regimes. Community-partnered research helps document racist discrimination ( Orozco et al., 2018 ), while original research co-designed and co-authored with frontline community leaders ( Fagundes et al., 2020 ) serves to inform movements and support their outreach for more accountable policy [see Rural Coaltiion's USDA Climate Comments (see text footnote 1), which use original maps and findings from Fagundes et al., 2020 ]. Community resilience research finds that indicators such as local and traditional ecological knowledge, strength of social networks, and degree of place attachment have all been tied directly to adaptation capacity in the face of disaster ( Koh and Cadigan, 2008 ; Wind and Komproe, 2012 ; Prior and Eriksen, 2013 ; Martin et al., 2017 ; Houston, 2018 ). This knowledge is emplaced (e.g., in particular geographies), embedded (within particular communities, cultures, and social networks), and embodied (in the lived experience of human beings living in diverse physical bodies). PAR methodologies are designed to cultivate these forms of emplaced, embedded, and embodied knowledge and build collective power. These partnerships and methodologies therefore rely on working on the ground, in the community, being seen by community members and also working closely with them.

Methods and Case Studies

In order to identify (1) the temporalities of the impacts of the pandemic on PAR and (2) the academic institutional factors that have shaped PAR prior and during the pandemic, we drew from a diverse set of PAR projects that we conducted (or attempted to conduct). 2 The resulting author team is composed of a group of scholar activists bound not by a specific project, but by a shared vision of academia as an asset for the community ( Table 1 ). Calls for case studies were placed on several online email lists 3 and shared between personal networks. Authors' work is with and for diverse communities, such as migrant farmworkers, Indigenous and queer communities, youth in the urban periphery, and urban housing coalitions. These communities are located in the global North (Canada, UK, and the US) and the South (Brazil, Mexico, and Peru). The projects were at different stages of development when the pandemic started, and include projects that were initiated during the pandemic. The authors make up a group of international scholars at different career stages (students, research staff, and early, mid-career faculty), from a representative set of institutes (teaching, research, small, and large). Our methodological approaches were equally diverse, and include a wide ranging set of tools to meet the needs expressed by our community partners, such as interviews, focus groups, participant observation, and digital, community and participatory mapping techniques.

Table 1 . Participatory action research project descriptions.

These methodological approaches were impacted by the pandemic in different ways and in varying degrees (see Table 1 ). Over the course of several months, we individually and collectively (through digital meetings) reflected on our experiences conducting PAR during the pandemic. Several themes emerged; such as methodological issues and successes of conducting PAR remotely, the heterogeneous effects of the pandemic on scholars due to their positionality, and the institutional support (or lack thereof) for PAR during the crisis. The following section is an analysis of our experiences, followed by a discussion on our findings, with focus on both the limitations and opportunities that arose in the context of doing PAR in the context of a global pandemic and the neoliberal university. We conclude with recommendations for researchers, research funding organizations, and universities to better support PAR partnerships so that they are in place and prepared for future crises.

Conducting PAR During COVID-19

Can par be remote.

COVID-19 pulled all of us out of the communities where we were working and locked us in our homes as we navigated the many uncertainties of the virus and its toll, with some of us even contracting the virus. During the early days of the pandemic, unpredictable and rapidly shifting government guidelines and information made planning difficult, if not impossible. New projects that started during COVID-19 lost their momentum, while other projects were temporarily suspended. For PAR researchers, who rely on partnerships and relationships that are often constructed on the ground, this digital shift initially created a lot of uncertainty and challenges as we all struggled to figure out what technologies were available, who had access to them, how they worked and the different ways in which they could be combined. However, as the pandemic progressed, we started to adapt our work despite the many limitations and the digital fatigue (both of researchers and participants) even as we all became much more familiar with the different technologies available, as well as more flexible and creative in adapting our research and objectives. While the utilization of online measures were helpful for all of us to quickly transition from in person to online meetings, it also impacted with whom and how we were able to communicate and the projects and objectives that came out of this new online form of communication. Our PAR projects demonstrate how different technologies worked in different contexts, often based on what people and communities were already using in each site.

Displacement of the Scholar-Activist

A significant way many of us were able to maintain relationships and build on our research was by working directly with social organizations who were already organized and in many cases functioned successfully online. This allowed us the possibility of shifting our work to an online platform that felt meaningful and already had an established online significance. With online presence now a common strategy for providing visibility to social organizations during the pandemic, organizations representing equity-deserving communities were already present in some online capacity, which made adjusting to online partnerships relatively easy. This allowed some of us to continue our partnerships and develop innovative ways and opportunities to rework research and project objectives. For example, drawing on their online work with different organizations and working with American University's Center for Environment, Community and Equity, 4 author GGL hosted a 2021 Earth day virtual webinar for nearly 500 registrants. Authors JA, SM, and EW were also able to interact with the community organization they worked for, as this organization had access to Zoom and a resident interpreter ( Muñoz et al., 2021 ). Author SK's PAR also evolved through virtual collaboration around webinars, and was made possible because of the commitment of the community organization she works with (Fuerza Migrante) to continuing engagement in a virtual way through the pandemic, and other social movements organizations for creating online venues for these discussions ( Klassen et al., in press ). Thus, for some of us, these online transformations were positive, despite their limitations, and highlighted the importance of the organizational relationships on which PAR often relies, as necessary to their ability to move online.

Our discussions regarding the role of organizations in facilitating PAR also lead us to reflect on who was left out of this new COVID dynamic. Community organizations are important stakeholders and advocates for communities, as well as facilitators for researchers to enter into communities, however they cannot represent all community members and at times create or represent community divisions or conflicts. Although many of us were successful in maintaining close, and ongoing working relationships with organizations that led to online initiatives and projects, others discussed being isolated from the community because organization leaders abruptly halted communication. Without stronger relationships with the community residents and other members of the organization, authors JA, SM, and EW were left to try to understand what had happened to the partnerships they were trying to foster ( Muñoz et al., 2021 ).

At the same time, in another project, instead of working with organizations, author RC was able to create community partnerships with individuals through local, intentionally ephemeral events. Although these events stopped entirely during the pandemic, thanks to these established relationships prior to the pandemic, author RC was able to maintain meaningful and strong relationships with participants and the broader community during lockdown. Similarly, the relationships in some ways changed online, allowing researchers and participants alike to reimagine these partnerships and objectives, and to consider future opportunities and research frameworks.

The Shift to Digital PAR

The ways in which each of us “resolved” the COVID-19 dilemma of not being in close contact with our partners involved different online formats of “formal” and “informal” means of communication, with limitations that included issues such as language, age, infrastructure, and the different stakeholders involved. Although countries with existing access to advanced technological frameworks were assumed to be less affected than developing countries without the same infrastructure in place, in reality our PAR programs conducted COVID-19 highlight that the digital divide was not so clear. None of the communities with which we worked were completely isolated and in some cases, in countries like Mexico and Brazil, daily technology like WhatsApp facilitated authors' connections with participants on a daily basis and/or in more informal conversations, than the more formalized Zoom meeting settings.

Author GBT described how he had been forced to leave the communities where he was conducting interviews and mapping workshops, canceling many planned activities. Nevertheless, he remains in contact with community members using WhatsApp, with “voice messages our preferred means of communication, particularly because the residents speak Chatino, a language that does not have a written form. We have even used [voice messages] to discuss [important] concepts, and I use it to continue learning the language and to ask questions when I am translating interviews.” Author SB used WhatsApp as a way to employ PAR methods with the help of community social centers that facilitated contact with São Paulo youth. Author SB used WhatsApp to digitally develop activities that were no longer possible in person. Although “translating these dynamic activities into WhatsApp had certain limitations [with] youth falling back into participant roles [instead of] being co-creators of the whole process”, author SB was able to use WhatsApp for a variety of activities such as photo-voice and group discussions, including even more practical activities where participants made recycled objects from plastic bottles and shared photos with the group. In this way, WhatsApp has facilitated both long-term relationships through informal contact and also allowed for the sharing of more structured activities for data and data collection.

Interestingly, the use of “informal” technology, like WhatsApp may be more successful when conducting research with communities in conditions of vulnerability, particularly in countries like Brazil or Mexico where it is widely used as a main means of communication. Additionally, these examples showed how WhatsApp helped reduce digital exclusion of hard to reach, vulnerable social groups. The digital methods that we chose and the rhythms of communication that we adopted were often based on the suggestions and needs of social organizations and participants' preferences and personalities. The authors' experiences showed that interaction worked best where we did not try to impose something new, but rather worked with what participants felt most appropriate and accessible. Although WhatsApp was a valuable tool available to some of us, others shifted to more “formal” modes of digital communication using Zoom and other teleconferencing applications, with mixed outcomes. This shift to remote PAR “took courage to allow for mistakes and imperfection in order to try out new formats and to get out of our comfort zone” ( Börner, 2021 ).

Unlike authors GGL and VL, who were working with organizations that were already online, SB discussed some of the initial challenges faced by the social organizations with whom she was working, that did not have the technological capacity at the beginning of the pandemic (such as work phones and laptops). Understaffing was also a problem, since many social organizations were addressing many of the sudden community needs and demands, like emergency food aid, that the COVID-19 lockdown originally caused. Authors JA, SM, and EW also struggled to build relationships of trust and support, as the organization they were working became increasingly overwhelmed as they scrambled to provide emergency food aid, access to emergency welfare assistance and basic knowledge to a large Latino immigrant population ( Muñoz et al., 2021 ). These issues are further compounded with time zone difference, unequal internet access, and unconventional living arrangements.

Emerging Opportunities

As discussed earlier, the shift to digital created many opportunities for many of the authors. Authors GGL and VL describe how “the online mode of organizing allowed us to expand our reach and correspondence domestically and even internationally”. They describe how their project “Disparity to Parity to Solidarity: Balancing the Scales of Agricultural Policy for Justice and Resilience” (D2P, dispartitytoparity.org ) which was already largely a virtual endeavor in part due to lack of funding, was cited by Indian agrarian leaders during the ongoing Indian Farmer Uprisings which called for minimum support prices and guaranteed markets for diverse growers to stave off corporate capture. Authors GGL and VL suggest that because of this online pivot, methodologies and online activities actually “became broader, more regular, more diverse and more integrative in shared, digital formats”. Similarly, for author SK, who was already physically distanced from the communities with whom she was working, “the lockdown changed perspectives on what was keeping us apart. Geographical distance diminished as a factor that might otherwise prevent working together across great distances and borders”. She continues to say, “In my experience with this PAR project, COVID actually opened up opportunities to feel proximity more as a sense of shared goals and values, which is what enabled our collaboration to continue and even grow, despite the COVID crisis.” Many of us shared similar experiences–although starting from a place of uncertainty and projects changed, often in significant ways, we were able to make things work and advanced meaningful partnerships and projects, sometimes even because of the conditions created by the pandemic.

These opportunities were also accompanied by the limits and inevitable exclusions of digital technologies. As authors JA, SM, and EW describe, after large meetings with multiple stake-holders, two languages, and technical glitches, they missed the opportunities for the small talk and watercooler moments; conversations before or after meetings with individuals, walking and chatting about informal issues, or engaging in non-work events, all of which contribute to relationship building and trust, and provide a framework for project development and innovation. Author SB described how she initially lost participants who had originally signed up to do a face to face extension course. Going online meant recruiting new participants willing to do the activities online. Although she was successful in her ability to recruit a new cohort, author SB explained how, “reaching hard to reach groups such as vulnerable youth in the urban periphery was already challenging pre-pandemic, and the COVID-19 crisis only exacerbated the gap between urban centers and the periphery”. Using email to reach out to participants, authors HC and LN stated that it was not easy to present the research as a collective endeavor in collaboration with participants. They worried that the research would “be seen as using the data from participants purely for the purposes of researchers' academic objectives, rather than providing future benefits for community actors.” They also highlighted how COVID-19 further isolated already equity-deserving individuals, explaining, “Many local participants, especially those who are less affluent, older or with lower education attainment were less likely to connect with local organizations through a digital platform.”

As discussed above, virtual remote data collection during the displacement of the PAR researcher from the field during COVID-19 opened up a myriad of sub-challenges as well as opportunities. In Table 2 , we provide a comprehensive view of the different scenarios of field research under COVID-19 based on our different experiences, to point out the key Strengths, Weaknesses, Opportunities, and Threats (SWOT) of virtual remote PAR. It is important to note that there is no one-size-fits-all approach to how PAR was conducted under COVID-19, and our PAR programs highlight a heterogeneity of experiences, with sometimes similar but also contrasting experiences.

Table 2 . Strengths, weaknesses, opportunities, and threats analysis of PAR under COVID-19 using digital tools.

Conducting activities entirely online furthermore raised various ethical and practical questions, such as concerns over trust-building, establishing connections and maintaining continuity. Some of the authors found creative approaches for trust-building, such as deep listening to the needs of community partners (including issues that were disconnected from the project) and following up with resources, data and connections; or dynamics such as using video calls, short videos and photos as a form of personal introduction. However, although some of the authors had already developed strong relationships they were able to build on, for many of us the online setting did not compensate for regular, informal and in-person trust-building opportunities, exacerbating the challenges of creating strong partnerships, especially with participants in conditions of digital vulnerability.

Institutional Support and the Impacts of COVID-19 on PAR Scholarship

The pandemic not only created opportunities and barriers to PAR methods, it has also affected us within our institutes and the broader Academy. We do not want to equate the weight of the impacts of COVID-19 on equity-deserving communities with those on scholars, yet want to mention the ways in which scholars have also been affected by the pandemic, particularly within those institutions and structures that have embraced academic capitalism as their modus operandi . Similarly, COVID-19 has had a dramatic impact on the careers of academic researchers and PAR itself, as It is evident that it also perpetuated and exacerbated inequalities among scholar activists: students, staff, and faculty. In this section, we argue that although we have observed weakened interactions between universities and communities due to the COVID, it appears from the cases that the previously established relationships that exist before crises, can help to mitigate challenges during crises. Here we discuss the factors that limited and enabled relational activities of PAR and reflect particularly on the relationships between the university and the community in the context of power dynamics in relation to PAR scholars and the functioning of academia.

COVID-19 and the Impact on the Student Researcher

The majority of students are under institutional timelines and during the pandemic were not necessarily provided extensions on program requirements nor additional pay. Doctoral students were left scrambling to alter their projects under the pressure of institutional funding and program timelines. Although many of the projects included in this paper were successful in either completing or advancing their research, many projects that would have advanced PAR methods and methodologies had to be re-routed, delayed, or entirely canceled. Furthermore, many doctoral programs in Canada and the United States now only offer 4–5 years of funding, when PAR practices and other qualitative methods may require longer periods of relationship building and data collection. Author RC describes their experience of writing the dissertation during COVID-19 as a period of struggle and little guidance. “Research resources and materials were scarce, and Atlanta was shut down. Archives and libraries were closed, ensuring a lack of physical materials and [inability to conduct] archival research to complement what my participants were telling me.” They continue to describe how, “I wrote my entire dissertation during the isolation of 2020 Atlanta. There was no vacation from COVID. There was no chance of reconnecting with participants and community friends and no talking through my findings in a communal space.” COVID-19 also extended author RC's program, forcing them to pay for two semesters out of pocket, even while “cis white hetero men in my cohort year continued to receive funding”. This sense of isolation and lack of emotional and financial support is widespread among graduate students and often goes unacknowledged by faculty and administration in normal times. COVID-19 exacerbated these conditions creating severely precarious conditions for many students. As author RC puts it, “There was a visceral trauma of COVID-19.”

COVID-19 and the Impact on Faculty

The neoliberal turn of University systems in many countries around the world has radically transformed the hiring and support of faculty, who is able to receive this support, and how it is administered. Universities were quick to use the pandemic to increase austerity measures, implement hiring freezes, buy out contracts, and promote early retirement. COVID-19 also allowed for the hiring of more short-term and less stable faculty positions, like fixed-term adjunct and lecturer positions. In day-to-day operations, universities waited to announce whether classes would be in-person or virtual, while adjunct instructors had less flexibility in determining either their class schedules or even their own safety to teach. At the same time, some of us did receive support from our institutions in the form of tenure extensions, technological assistance and instruction, working from home, family leave, etc. In many ways, although tenure track faculty continued to feel the stress of working long hours and moving between teaching, administrative, and research responsibilities, the pandemic reinforced the institutional divisions between who is provided full support and funding opportunities, and those who are seen as temporary workers or figures in departments. These strategies entrenched inequalities at the university level while hindering participatory action and community-led/based research.

COVID-19 and the Support of Institutional Community Engagement Programs

Additionally, and surprisingly to some of us, many of the author-scholars included here, described how they benefited from the flexibility of institutional support of established community engagement offices or new initiatives to uplift and support scholars doing PAR.

Author EW found that the University of Denver's (DU's) Center for Community Engagement to advance Scholarship and Learning (CCESL) opened up diverse possibilities, since it already had a strong record of community-engaged research, through which it had established trusting relationships with community members as well as city officials, particularly through author CMD's field work. With healthy relationships already in place spanning sectors as well as academic institutions, CMD and EW were positioned to respond quickly to a call for proposals from a new NSF program, the CIVIC Innovation Challenge. 5 The strength of existing place-based relationships not only helped them secure the planning grant, it also enabled them to swiftly launch a collaborative, action-oriented, inter-institutional research initiative with neighborhood partners during the pandemic. The quarantine posed challenges—especially because the neighborhood they were partnering with had the highest hospitalization rates for COVID-19 in the city ( Németh and Rowan, 2020 ). However, in other ways, the pandemic created a window of opportunity for them to do the kind of anti-racist, asset-based, intersectional, transdisciplinary, community-engaged, applied research to which they are committed. Similarly, the apocalyptic nature of 2020 (and visibility of social justice movements taking to the streets) revealed the profound structural disparities in our cities in ways that created opportunities to have more honest and open public conversations about infrastructural racism. This moment of opportunity helped their team galvanize collaboration among the 25 multi-sector partners. Moreover, because all members of the inter-institutional research team were local to Denver, when neighborhood leaders invited academic partners to support outreach efforts for their vaccination clinic, they were able to mobilize university resources to support tri-lingual flier design, printing, and door-to-door distribution.

Author SB's work in Brazil was greatly facilitated by the extension office at the University of São Paulo, which was open to adapting her course to an online format and to recruit new participants. As she explains, “when adapting to the digital, academic institutions showed a certain flexibility [making it possible] to change/delay the date for the extension course, to enroll additional students, and to send the inscription forms online”. Similarly, the Community Engagement Partnership Recognition Fund 6 (PRF) from the University of British Columbia, which offers small grants for community partners in PAR partnerships, offered dedicated funds for projects that addressed the impacts of the pandemic. While the administration of these funds still present barriers for community partners, other accommodations like allowing oral progress reports by phone made the funding process less onerous for author SK's community partner.

Yet, there were concerns of lack of flexibility and support from institutions for us as scholars to operate beyond official roles. Nevertheless, these examples and case studies highlight both the opportunities and challenges for both doing PAR research under normal circumstances and the way these challenges and opportunities can be exacerbated and used in times of crisis. As author SB reflected, community engagement offices can “link universities closer to community stakeholders and establish partnerships for the future, which can facilitate new digital research projects and support researchers in identifying participants and deal with administrative requirements of funders and universities.”

COVID-19 and Institutional/External Funding for PAR

Some of the early career researchers struggled against multiple barriers as a result of insufficient funding, lack of funding support and recognition, and funding time structures that did not take into account the challenges posed by a pandemic crisis. Several experienced a manufactured urgency from tight timelines. Authors CMD and EW found “an urgency arose from the inflexibility of the 4-month planning grant. This type of urgency is typical of white supremacist cultures, where rigid timelines reinforced by funders who expect too much for too little, often make it difficult to take time to be inclusive, encourage democratic processes, think long-term, or learn from mistakes.” Similarly, author SB found “as a postdoctoral researcher on a project with a limited duration, I also struggled with the lack of a cost-extension from the funders.” Additional barriers were also discovered, such as the PRF grant awarded to author SK's partner organization, Fuerza Migrante, which required a charity number to process funds directly to the community partner, an extra level of bureaucracy that made getting material support to the community partner—the funding recipient—even more challenging. While many of us benefited from established community engagement offices or new initiatives to uplift and support scholars doing participatory work (e.g., the Public Scholars Initiative at the University of British Columbia), many of the authors had to find ways to overcome institutional barriers and continued to operate outside of institutional pathways, and found inspiration from communities themselves. For example, author JA was awarded a community grant but his institute requested 50% of the funds for University overhead despite all the research taking place within the community. To avoid these overhead costs and ensure that the funds would be allocated completely for PAR, author JA established himself as an independent consultant. This resulted in not only additional challenges for author JA, such as finding and purchasing professional liability insurance, but also severed a link between the community and the university.

In contrast to author JA's experience, other authors were able to continue their research with communities due to university funding and support despite COVID-19. In some cases, already established relationships between universities and local communities were conducive to aiding projects serving the public during the pandemic. Although the importance of universities' relationships with local communities was positive by some accounts, the understanding of the value of participatory research seemed to vary across academic institutions. Our PAR projects highlight a divergence in the support granted different actors, which depend greatly on their institutional positions and obligations, as well as the existing offices and programs, and duration of contracts. Those who had secured positions with sufficient research support, or who were at universities with community engagement offices tended to be able to continue their research. Several authors were awarded funding specific to community-focused COVID responses, such as the PRF grant awarded to author SK and the NSF Civic Innovation Challenge awarded to authors CMD and EW. According to authors CMD and EW “these reflect important paradigmatic shifts and expanded epistemological diversity in research funding. We encourage [grant providing organizations] to continue on an anti-oppression path and to continuously work to dismantle patterns of white supremacist culture within the institution.”

While COVID-19 has demonstrated that participatory action research has never been more needed, the pandemic has also exacerbated the challenges of conducting PAR. As set out above, we reflected on our own research experiences during the COVID-19 pandemic to reflect on the challenges of doing PAR under quarantine and in the broader context of academic, patriarchal, and racial capitalism. The impacts of COVID-19 have not only laid bare the impacts of capitalism on community relationships, but also have highlighted how the neoliberal university model is unevenly providing resources with effects that have the potential to work against the general PAR ambition of broadening institutional engagement with communities. While there were instances where institutional supports enabled PAR to continue (or even catalyzed it in one instance), for the most part it was the commitment of the individuals involved; relationships held by researchers and community organizations (not universities) and the use of unconventional digital tools (e.g., WhatsApp and Zoom) that enabled PAR during the pandemic. In many ways we had to relearn and reevaluate how to do our work in ways that made it possible and that remained true to the nature of PAR. For those of us who had already established strong relationships with community members and organizations, the shift was often easier than many of us expected.

Despite being heterogeneous and not offering a one-size-fits-all approach, our experiences also show how beneficial mutual learning from peer-experiences can be. Hence, a coordinated information platform would be beneficial for peer-learning by listing tools for digital PAR aimed at researchers as well as community stakeholders seeking to reproduce certain interventions. In the early days of COVID-19, some websites and blogs emerged to list online tools for PAR. However, online collections of resources and tool guides for remote PAR are only available in a piecemeal fashion and do not sufficiently address the needs of digitally vulnerable populations. Moreover, most tools and suggestions are directed at English-speaking audiences. Our contribution seeks to provide a starting point for an international and global North-South dialogue which brings together PAR academic voices to document both formal and informal practices of digital engagement. It may also provide a stepping stone for building stronger networks, cooperations, and partnerships between universities and community partners.

Of course, scholar-community relationships are at the heart of trusting and equitable PAR work, but institutions can do more to create the conditions for and reduce barriers to creating and maintaining these relationships. Reflecting on the wider academic context, the analysis of these case studies provide insights on the direction and possible alternatives of institutional support for PAR. Even though there is no panacea outside a radical re-imagining of the Academy, several changes to the current academic system could be put forward. Firstly, increased institutional support and resources for digital work, such as community access to online tools and workshops. Second, halting the reliance on short-term positions and providing security of tenure, which is needed for morale and focus in long-term and relational work, and to recognize PAR scholarship in promotion. Third, the funding system needs to change to become more flexible (e.g., in terms of deadlines) and invested in smaller-scale community projects. Lastly, creating or expanding community-engagement programs or offices that (1) build capacity for anti-racist, equity-centered, intersectional, collaborative learning and action, and (2) provide the support PAR scholars need during future crises. This institutional support can help place researchers in an active and sustained role during crises instead of being reactionary, interrupted, and displaced.

Data Availability Statement

The original contributions presented in the study are included in the article/supplementary Material, further inquiries can be directed to the corresponding author/s.

Author Contributions

JA and SM conceived the original idea. UA, JA, GB, SB, HC, RC, CD, SK, VL, SM, LN, AM, and EW contributed to the analysis and writing. All authors contributed to the article and approved the submitted version.

SB's research was funded by the European Union's Horizon 2020 Research and Innovation Programme, Marie Sklodowska-Curie Grant Agreement No. 833401, NEXUS-DRR.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's Note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Acknowledgments

We would like to acknowledge the communities and scholars involved with this work that were directly impacted by COVID-19. We would also like to dedicate this manuscript to Jacinto Barrera Bassols.

1. ^ See https://organizingengagement.org/models/participatory-action-research-and-evaluation/ for case studies of PAR conducted “done well”.

2. ^ Note that several of the authors have personal experience with COVID-19, as family, friends, or themselves contracted COVID-19 prior to or during the writing of this manuscript.

3. ^ The email lists used to advertise the call include: the Critical Geography listserv crit-geog-forum@jiscmail.ac.uk , the Participatory Geographies Research Group of the Royal Geographic Society listserv pygywg@jiscmail.ac.uk , the Scholar Activist listserv scholaractivists@lists.riseup.net, the Community Geographies Collaborative https://cgcollaborative.org/ , and the American Association of Geographers Food and Agriculture Specialty Group's Food Justice Scholar-Activist/Activist-Scholar Community of Practice https://gfasg.wordpress.com/activist-scholarship/ .

4. ^ https://www.american.edu/centers/cece/

5. ^ https://nsfcivicinnovation.org/

6. ^ https://communityengagement.ubc.ca/our-work/partner-recognition-fund/

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Keywords: participatory action research, academic capitalism, COVID-19, community engagement, scholar activism, institutional support, participatory methodology, participation

Citation: Auerbach J, Muñoz S, Affiah U, Barrera de la Torre G, Börner S, Cho H, Cofield R, DiEnno CM, Graddy-Lovelace G, Klassen S, Limeberry V, Morse A, Natarajan L and Walsh EA (2022) Displacement of the Scholar? Participatory Action Research Under COVID-19. Front. Sustain. Food Syst. 6:762065. doi: 10.3389/fsufs.2022.762065

Received: 20 August 2021; Accepted: 14 January 2022; Published: 18 February 2022.

Reviewed by:

Copyright © 2022 Auerbach, Muñoz, Affiah, Barrera de la Torre, Börner, Cho, Cofield, DiEnno, Graddy-Lovelace, Klassen, Limeberry, Morse, Natarajan and Walsh. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Jeremy Auerbach, j.auerbach@qub.ac.uk

This article is part of the Research Topic

Participatory Action Research in a Time of COVID and Beyond

Research Articles

Vol. 25 No. 3: Special Issue: Community Engagement in the COVID-19 Reality

Impact of COVID-19 on a Participatory Action Research Project: Group Level Assessments with Undergraduate Women in Engineering

• Batsheva Guy  ▸  ▾
• Brittany Arthur

As participatory action researchers during the COVID-19 pandemic, we struggle with maintaining meaningful collaboration with our community partners while navigating social distancing guidelines. For the past several years, we have been working with undergraduate women in engineering at a large, public, mid-western research university to assess their experiences on campus and during their co-op rotations in order to influence equitable programming and inclusive practices at our institution. We have been primarily using Group-Level Assessment, a qualitative, participatory research method that is rooted in inclusivity, stakeholder engagement, and instigating actionable change. When our university went remote, we were faced with the challenge of transitioning our community research partnership online and continuing to use our chosen method. The current article compares participant experiences in both an in-person and remote environment, in order to assess the effectiveness of moving our participatory research practices to an online platform. Findings indicated that while both in-person and virtual Group-Level Assessments allowed participants to better understand others’ experiences and allowed their voices to be heard, the in-person method was more engaging. However, the virtual method allowed for more time to do action planning.

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Vol. 23 No. 2 (2023): Action Research in the time of COVID-19

Artist Statement

Action research in the time of covid-19: an editorial, harnessing the affordances of action researchers to address the challenges of the covid-19 pandemic: educational leaders take action research online, an action research study of using group-based remote learning with esl high school students in english language arts, socioscientific issues and covid-19: responding to curriculum reform through action research, helping language teachers in lithuania take their first action research steps during the covid-19 pandemic: an online strategy, rural remote learning in manitoba during covid-19: opportunities and challenges of action research, sojourning educators at international schools overseas and the covid-19 pandemic, book reviews, sumida huaman, e., & martin, n. d. (2020). indigenous knowledge systems and research methodologies: local solutions and global opportunities. canadian scholars., gullion, j. s., & tilton, a. (2020). researching with: a decolonizing approach to community-based action research. brill., announcements, call for submissions for special issue focused on school community health and wellness, new podcast: episode #10 of participatory action research feminist trailblazers & good troublemakers, information.

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Management of the COVID-19 pandemic: challenges, practices, and organizational support

Affiliations.

• 1 Nursing Administration, Faculty of Nursing, Assiut University, Assiut, Egypt. [email protected].
• 2 Nursing Administration, Faculty of Nursing, Assiut University, Assiut, Egypt.
• 3 Nursing Administration, Faculty of Nursing, South Valley University, Qena, Egypt.
• 4 Nursing Administration, Faculty of Nursing, Zagazig University, Sharkia, Egypt.
• 5 Nursing Department, College of Applied Medical Sciences, Shaqra University, Shaqra, Saudi Arabia.
• 6 Nursing Administration, Faculty of Nursing, Tanta University, Tanta, Egypt.
• PMID: 35869492
• PMCID: PMC9306231
• DOI: 10.1186/s12912-022-00972-5

Background: Health organizations currently face tremendous challenges in the management of the COVID-19 pandemic. To do this, successful and proven scientific practices and support are needed.

Aim: This study aimed to explore the challenges, practices, and organizational support dealt with by nursing managers in the management of the COVID-19 pandemic.

Method: A qualitative content analysis study evaluated 35 nursing managers in five university hospitals through a semi-structured interview. The Consolidated Criteria for Reporting Qualitative Research were used for this qualitative study.

Results: Three main themes emerged: Challenges include the development of a COVID-19 crisis management plan, a shortage in nursing staff, and psychological problems. Practices include; changes in work schedules for nursing staff, the exchange process, hospital preparation, and training and education. And organizational support includes both support at an organizational level and support at an individual level.

Conclusion: This study revealed that nursing managers are faced with many challenges in the management of COVID-19, requiring good practices and organizational support. This study offers evidence for nursing managers to expect problems that may arise during the pandemic.

Recommendations: The COVID-19 pandemic requires the development of an integrated plan, and this plan must be disseminated to the hospital's nursing and medical teams to better equip them for the current and future crises.

Keywords: COVID-19 pandemic; Challenges; Nursing managers; Organizational support; Practices.

© 2022. The Author(s).

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Masters of Arts in Education Action Research Papers

Research papers from 2023 2023.

The Impact of Direct Integration of Social Emotional Lessons with Montessori Upper Elementary Children , Gina Awadallah

Mindfulness Practice/Mindful Breathing in the Classroom: The Effect on Unwanted Behaviors in the Classroom , Dana Banitt

The Effects of Authentic Writing on Third-Grade Student Motivation and Achievement , Caitlin Barrett

The Effects of Phonics Instruction on Reading Fluency in an Elementary Classroom , Jill Belrose

The Impact of Social-Emotional Learning Strategies on Performance Anxiety in the Fourth-Grade Music Classroom , Erika A. Bergson, Erin M. Lawler, and Jennifer L. Mickels

Montessori Parent Education: Supporting Early Childhood Independence through Social-Emotional Learning , Gloria Boesenberg

The Impact of a Technology-Based Intervention on Phonemic Awareness Skills In First Graders , Ashley M. Christenson

The Effect of Goal Setting and Reflection on Student Motivation in High School Classrooms , Jodi Clark and Stephanie Moses

How does blended learning affect student satisfaction and learning outcomes in a secondary science classroom? , Lisa Fuccello

The Effectiveness of Grace and Courtesy Lessons in a Montessori Environment , Megan Green

The Impact of Uninterrupted Work Periods on a School Leader’s Self-Efficacy , Heather Harvey

Literacy Instruction and Student Writing in Middle School Social Studies , Nicole Hedman

"How does explicit phonemic awareness instruction in a 6th-grade classroom, influence students reading fluency and comprehension?" , Danette M. Hendrickson

The Effects of Repeated Reading Interventions on First-Grade Reading Fluency , Brooks Julia

The Impact of Cognitively Guided Instruction on Students’ Mathematical Mindsets , Christina Keller

Breaking Bread: Co-Creating Mindful Eating Practices in Lower Elementary , Katie Keller

The Impact of Geometry Montessori Education on Students’ Skills and Mindsets , Laura E. Ledesma Ortiz

Increasing Concentration Through Multistep Practical Life Works in a Montessori 2-6 Classroom , Gay Luise

The Impact of Dialogue Journals and Circles on Social and Self-Awareness in 6th Grade , Karli Mann

Impacts of Makerspaces and Design Thinking on Creativity in Third-Grade Students , Renae McGauvran

Improving Student Critical Thinking Skills Through Explicit Teaching Strategies , Danielle M. Miller

The Effects of Music and Movement on Learning Sight Words , Khou Moua

The Impact of Role-Play on the Self-Regulation of Preschoolers Following the COVID-19 Pandemic , Jennifer Myers

Impacts of Using the Reggio Emilia Approach to Technology on Social Skills in an Early Learning Classroom , Nancy L. Nakaoka

The Effects of Work Plans on Independence in a Primary Montessori Classroom , Cynthia Narine

The effectiveness of roleplaying in teaching preschoolers social skills , Qi Pan

How does reading fluency affect reading comprehension in the elementary classroom , Poracha Robinson

The Connection Between Social-Emotional Learning and Academic Success , Jayna Ruprecht

Implementing Environmentally Conscious Skills into Toddlers’ Routines , Martha Sanchez Romero

Effects of Character Education on Independent Conflict Resolution , Emily Stein

Identifying Activities and Skills that Occur in Circle Time: An Action Plan to Engage Students Social-Emotional learning (SEL) at a Head Start , Priscilla A. Thomas

Developing Self-regulation , Terriann VanDeventer

Leveraging AI Tools to Reduce Teacher Stress and Workload , Kassidy Waddell

The Influence of Social Stories on Early Learners , Kate Whiting

Research Papers from 2022 2022

The Effects of Formative Feedback and Assessment Tools on Writing Proficiency and Motivation in Elementary Classrooms , Amy Anderson and Beth Horihan

The Impact of Discourse on Math Learning in Upper Elementary , Dawn Anderson

Efficacy of Community Building in Adult Online Learning Environments , Meghan Jennifer Gwin Anson M.Ed.

The Relationship Between Teacher Use of Exclusionary Discipline and Using a Problem-Solving Approach to Conflict with Eighth Grade Students , Rachel Austin and Becki Zeidler

The Effects of Guided Reading in a Primary Montessori Classroom , Taylor Bates, Mary Brocklesby, and Katie McGarrigle

The Impact of the Establish-Maintain-Restore Method on Teacher-Student Relationships in the Secondary Classroom , Melissa Bauer

The Relationship Between Multisensory Learning and Phonemic Awareness and Letter Identification in Kindergarten , Justine J. Beyer

"What Are the Effects Of Parental Informational Nights/Parenting Classes on the Parent’s Understanding of the Montessori Method?" , Mackenzie Brown and Kayla Gamble

The Effects of Inquiry-Based Activities on Content Vocabulary Retention in 4th-Grade Science Students , Jillian Burns

The Effects of Outdoor Education and Mindfulness Practices on Attention Issues of Third Graders , Elizabeth Carlson

Mindfulness, The Effects on Student Trauma and Stress Management , kayla Clauson

Focusing on Grace and Courtesy in the Hopes of Achieving a More Peaceful Classroom Community , Marshetta Davis

Improving Assessment Outcomes in Algebra and Functions Through Concrete Materials and Direct Instruction , Sandra Deacon and Courtney Pillers

Examining the Impact of Student-Centered Teaching Practices on Ownership and Belonging in a Middle School Orchestra Classroom , Claire Dill

The Effects of Scientific Inquiry Methodologies on Student Understanding of Evolution , Rachel Downing

"Mindfulness Breathing in Support of Emotional Self-Regulation in a Montessori Upper Elementary Environment" , Emily Farris

Improving Student Concentration Through Caregiver Education , Arianna Fearing

The Effects of Goal Setting and Self-Reflection on Student Work Completion and Work Habits in a Montessori Upper Elementary Environment , Kari F. Frentzel

Impact of Student-Driven Mathematical Assessment on Learning Behaviors in Sixth Grade Students , Cheri R. Gardner

Integrating Montessori Curriculum with State Standards in a Public Montessori School , Brenda Green

A Prepared Environment At Home For One Adolescent: The Effect of Exercises of Practical Life on Self-Regulation of an Adolescent , Melissa Herrick Franzen

The Effects of Daily Explicit Phonics Instruction on Reading Fluency in First Grade , Allison M. Johnson

Goal Setting and Student Conferencing Action Research Study , Jamie Johnson

The Influence of Role-Play Scenarios and Mindful Reflection on a Small Group of Diverse Daycare Providers’ Responses to Classroom Situations , Charlene Kam

The Effects of ENVoY on the Middle School Social Studies Classroom Behaviors , Christine Karst

Creativity as a Gateway to Mental Health: A Burnout Recovery Journey , Sarah Keller

Gratitude and Work Conferences in the Upper Elementary Montessori Classroom , Karrie Kelly

Parents Opinions Matter: The Impact of Incentives on Parent/Child Workshops within the Raising a Reader Program , Samantha Kennedy

The Effect of Antiracist Children’s Literature on Developing Racial Awareness in Early Childhood , Brittany L.M. Ladd

The Influence of Yoga and Meditation on Intrinsic Motivation in Early Childhood Education , Nicole Laviolette

Mindfulness Breathing and Self-Regulation: The Effects of COVID-19 on Children , Savannah Lontz

The Impact of Peer-Mediated Support on Social Interactions in a Middle School Inclusive Setting , Adam (AJ) J. Naatz

Effects of Practical Life Activities and Normalization in the 3–6-year-old Classroom , Lori North

The Effects of Leading with Empathy on Faculty Morale in a Montessori Setting , Andrea O'Brian

Sealing the Cracks: An Examination of Using Special Education Accommodations in the General Education Classroom , Luke C. Olley

The Effects of Cognitively Engaging Exercise on Children’s Executive Functioning , Emily E. Osborn

The Impact of Explicit Phonemic Awareness Instruction in a Kindergarten Classroom , Jaclyn Partridge

The Impact of Altering Physical and Human Components in Middle School Mathematics Classes on Assessment Performance , Raina Quinnell

The Effect of a Culturally Diverse Art Curriculum on the Early Childhood Student’s Cultural Competency , Erin Reynolds

The Impact of Read Aloud Summarizing Practice for English High School Students at an Online School , Samantha Savoie

The Impact of Reflective Feedback Strategies on Learning Behaviors on Seventh-Grade Social Studies Students , James Seegebarth

The Impact of Implementing Virtual Science Notebooks on Student Science Achievement in a Primary Classroom , Emily Sherman

The Effect of Morning Meetings on Positive Relationships and Negative Behaviors in Kindergarten Students , Kennedy Stace

The Effect of Differentiation on Literacy Performance in Kindergarten , Madeline R. Stevens

Finding roots in the Montessori social studies curriculum , Kimberly Torres

Self-Efficacy and Critical Race Theory: The Emotions and Identity of a Montessori Teacher , Marisa Tuffiash

The Impact on School Progress of Building a Child's Self-efficacy at Home , Diana Wali Eddine

The Impact of Mindfulness Activities on Teacher Stress and Student Behavior in a Second Grade Classroom , Michelle Wegrzyn

What Evidence of Change Emerges When Students with Behavioral and Learning Challenges are Placed in an Early Childhood Montessori Environment in Rural China? , Jiao J. Zhang

Research Papers from 2021 2021

"Developing Creative Thinking with Intentional Teaching Practices in Academic Subjects for Early Childhood Classrooms" , Rebecca Appleby

I See You, I Feel Me: Journaling for Confidence, Value, and Collective Efficacy Among Partner Teachers , Laura L. Asher

Sustaining Teacher Resilience for Montessori Education , Rebecca Britt

The Impact of Self-Set Educational Goals on Increasing Academic Performance in a Middle School Environment , Erin Brown and Alexandra Luthe

The Effects of Student Constructed Formative Assessment in the Elementary Classroom , Jessica Burgwald

The Impact of Creative Movement Presentations on Dance Participation and Student Attitudes Towards Dance in a Montessori Early Childhood Classroom , Laura Cefalu

Effects of classroom talk lessons on student perceptions of collaborative group work in a remote, synchronous Montessori elementary learning environment , Amy Chionis

The Impact of Extended Recess with Loose Parts Play on Montessori Primary Student Self-Regulation and On-Task Behaviour , Rossana Cogorno Maldonado

The Effects of Professional Development on Collective Teacher Efficacy , Rachel Cordova

The Effect of Using Literacy Assessment and Standards Based Teaching for Students with Cognitive Disabilities in Secondary Education , Annie Elias

The Impact of Creative Movement Presentations on Dance Participation and Student Attitudes Towards Dance in a Montessori Early Childhood Classroom , Ruth Flowers

The Effect of Control-Based Group Games on Self-Controlled Behavior in a Primary Montessori Classroom , Sophia Foreman

Spanish Vocabulary Acquisition and Implementation: The Effect in a Mixed-aged Montessori Primary Classroom , Nadhira Hathotuwegama

The Effects of Daily Read Alouds on Comprehension Acquisition in a Montessori Setting , Gina Hoffman

The Effects of Reciprocal Teaching on Reading Comprehension in the Virtual Middle School English Classroom , Sydney Jones

Supporting Self-Efficacy Toward Science, Technology, Engineering, and Mathematics Skills in Secondary Students , Amy Kienberger and Clara Raineri

Proximity and Preparation: The Keys to Engagement in Secondary Montessori Literature Seminars , Metta M. King

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• Open access
• Published: 14 October 2023

A scoping review of ‘Pacing’ for management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): lessons learned for the long COVID pandemic

• Nilihan E. M. Sanal-Hayes 1 , 7 ,
• Marie Mclaughlin 1 , 8 ,
• Lawrence D. Hayes 1 ,
• Jacqueline L. Mair   ORCID: orcid.org/0000-0002-1466-8680 2 , 3 ,
• Jane Ormerod 4 ,
• David Carless 1 ,
• Natalie Hilliard 5 ,
• Rachel Meach 1 ,
• Joanne Ingram 6 &
• Nicholas F. Sculthorpe 1  

Journal of Translational Medicine volume  21 , Article number:  720 ( 2023 ) Cite this article

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Controversy over treatment for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a barrier to appropriate treatment. Energy management or pacing is a prominent coping strategy for people with ME/CFS. Whilst a definitive definition of pacing is not unanimous within the literature or healthcare providers, it typically comprises regulating activity to avoid post exertional malaise (PEM), the worsening of symptoms after an activity. Until now, characteristics of pacing, and the effects on patients’ symptoms had not been systematically reviewed. This is problematic as the most common approach to pacing, pacing prescription, and the pooled efficacy of pacing was unknown. Collating evidence may help advise those suffering with similar symptoms, including long COVID, as practitioners would be better informed on methodological approaches to adopt, pacing implementation, and expected outcomes.

In this scoping review of the literature, we aggregated type of, and outcomes of, pacing in people with ME/CFS.

Eligibility criteria

Original investigations concerning pacing were considered in participants with ME/CFS.

Sources of evidence

Six electronic databases (PubMed, Scholar, ScienceDirect, Scopus, Web of Science and the Cochrane Central Register of Controlled Trials [CENTRAL]) were searched; and websites MEPedia, Action for ME, and ME Action were also searched for grey literature, to fully capture patient surveys not published in academic journals.

A scoping review was conducted. Review selection and characterisation was performed by two independent reviewers using pretested forms.

Authors reviewed 177 titles and abstracts, resulting in 17 included studies: three randomised control trials (RCTs); one uncontrolled trial; one interventional case series; one retrospective observational study; two prospective observational studies; four cross-sectional observational studies; and five cross-sectional analytical studies. Studies included variable designs, durations, and outcome measures. In terms of pacing administration, studies used educational sessions and diaries for activity monitoring. Eleven studies reported benefits of pacing, four studies reported no effect, and two studies reported a detrimental effect in comparison to the control group.

Conclusions

Highly variable study designs and outcome measures, allied to poor to fair methodological quality resulted in heterogenous findings and highlights the requirement for more research examining pacing. Looking to the long COVID pandemic, our results suggest future studies should be RCTs utilising objectively quantified digitised pacing, over a longer duration of examination (i.e. longitudinal studies), using the core outcome set for patient reported outcome measures. Until these are completed, the literature base is insufficient to inform treatment practises for people with ME/CFS and long COVID.

Introduction

Post-viral illness occurs when individuals experience an extended period of feeling unwell after a viral infection [ 1 , 2 , 3 , 4 , 5 , 6 ]. While post-viral illness is generally a non-specific condition with a constellation of symptoms that may be experienced, fatigue is amongst the most commonly reported [ 7 , 8 , 9 ]. For example, our recent systematic review found there was up to 94% prevalence of fatigue in people following acute COVID-19 infection [ 3 ]. The increasing prevalence of long COVID has generated renewed interest in symptomology and time-course of post-viral fatigue, with PubMed reporting 72 articles related to “post-viral fatigue” between 2020 and 2022, but less than five for every year since 1990.

As the coronavirus pandemic developed, it became clear that a significant proportion of the population experienced symptoms which persisted beyond the initial viral infection, meeting the definition of a post-viral illness. Current estimates suggest one in eight people develop long COVID [ 10 ] and its symptomatology has repeatedly been suggested to overlap with clinical demonstrations of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In a study by Wong and Weitzer [ 11 ], long COVID symptoms from 21 studies were compared to a list of ME/CFS symptoms. Of the 29 known ME/CFS symptoms the authors reported that 25 (86%) were reported in at least one long COVID study suggesting significant similarities. Sukocheva et al. [ 12 ] reported that long COVID included changes in immune, cardiovascular, metabolic, gastrointestinal, nervous and autonomic systems. When observed from a pathological stance, this list of symptoms is shared with, or is similar to, the symptoms patients with ME/CFS describe [ 13 ]. In fact, a recent article reported 43% of people with long COVID are diagnosed with ME/CFS [ 13 ], evidencing the analogous symptom loads.

A striking commonality between long COVID and similar conditions such as ME/CFS is the worsening of symptoms including fatigue, pain, cognitive difficulties, sore throat, and/or swollen lymph nodes following exertion. Termed post exertional malaise (PEM) [ 14 , 15 , 16 , 17 ], lasting from hours to several days, it is arguably one of the most debilitating side effects experienced by those with ME/CFS [ 16 , 17 , 18 ]. PEM is associated with considerably reduced quality of life amongst those with ME/CFS, with reduced ability to perform activities of daily living, leading to restraints on social and family life, mental health comorbidities such as depression and anxiety, and devastating employment and financial consequences [ 19 , 20 , 21 , 22 ]. At present, there is no cure or pharmacological treatments for PEM, and therefore, effective symptom management strategies are required. This may be in part because the triggers of PEM are poorly understood, and there is little evidence for what causes PEM, beyond anecdotal evidence. The most common approach to manage PEM is to incorporate activity pacing into the day-to-day lives of those with ME/CFS with the intention of reducing the frequency of severity of bouts of PEM [ 23 ]. Pacing is defined as an approach where patients are encouraged to be as active as possible within the limits imposed by the illness [ 23 , 24 , 25 ]. In practice, pacing requires individuals to determine a level at which they can function, but which does not lead to a marked increase in fatigue and other symptoms [ 26 , 27 ].

Although long COVID is a new condition [ 3 , 14 ], the available evidence suggests substantial overlap with the symptoms of conditions such as ME/CFS and it is therefore pragmatic to consider the utility of management strategies (such as pacing) used in ME/CFS for people with long COVID. In fact, a recent Delphi study recommended that management of long COVID should incorporate careful pacing to avoid PEM relapse [ 28 ]. This position was enforced by a multidisciplinary consensus statement considering treatment of fatigue in long COVID, recommending energy conservation strategies (including pacing) for people with long COVID [ 29 ]. Given the estimated > 2 million individuals who have experienced long COVID in the UK alone [ 30 , 31 , 32 ], there is an urgent need for evidence-based public health strategies. In this context, it seems pragmatic to borrow from the ME/CFS literature.

From a historical perspective, the 2007 NICE guidelines for people with ME/CFS advised both cognitive behavioural therapy (CBT) and graded exercise therapy (GET) should be offered to people with ME/CFS [ 33 ]. As of the 2021 update, NICE guidelines for people with ME/CFS do not advise CBT or GET, and the only recommended management strategy is pacing [ 34 ]. In the years between changes to these guidelines, the landmark PACE trial [ 35 ] was published in 2011. This large, randomised control trial (RCT; n = 639) compared pacing with CBT and reported GET and CBT were more effective than pacing for improving symptoms. Yet, this study has come under considerable criticism from patient groups and clinicians alike [ 36 , 37 , 38 , 39 ]. This may partly explain why NICE do not advise CBT or GET as of 2021, and only recommend pacing for symptom management people with ME/CFS [ 34 ]. There has been some controversy over best treatment for people with ME/CFS in the literature and support groups, potentially amplified by the ambiguity of evidence for pacing efficacy and how pacing should be implemented. As such, before pacing can be advised for people with long COVID, it is imperative previous literature concerning pacing is systematically reviewed. This is because a consensus is needed within the literature for implementing pacing so practitioners treating people with ME/CFS or long COVID can do so effectively. A lack of agreement in pacing implementation is a barrier to adoption for both practitioners and patients. Despite several systematic reviews concerning pharmacological interventions or cognitive behavioural therapy in people with ME/CFS [ 36 , 40 , 41 ], to date, there are no systematic reviews concerning pacing.

Despite the widespread use of pacing, the literature base is limited and includes clinical commentaries, case studies, case series, and few randomised control trials. Consequently, while a comprehensive review of the effects of pacing in ME/CFS is an essential tool to guide symptom management advice, the available literature means that effective pooling of data is not feasible [ 42 ] and therefore, a traditional systematic review and meta-analysis, with a tightly focussed research question would be premature [ 43 ]. Consequently, we elected to undertake a scoping review. This approach retains the systematic approach to literature searching but aims to map out the current state of the research [ 43 ]. Using the framework of Arksey and O'Malley [ 44 ], a scoping review aims to use a broad set of search terms and include a wide range of study designs and methods (in contrast to a systematic review [ 44 ]). This approach, has the benefit of clarifying key concepts, surveying current data collection approaches, and identifying critical knowledge gaps.

We aimed to provide an overview of existing literature concerning pacing in ME/CFS. Our three specific objectives of this scoping review were to (1) conduct a systematic search of the published literature concerning ME/CFS and pacing, (2) map characteristics and methodologies used, and (3) provide recommendations for the advancement of the research area.

Protocol and registration

The review was conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) guidelines [ 45 ] and the five-stage framework outlined in Arksey and O’Malley [ 44 ]. Registration is not recommended for scoping reviews.

Studies that met the following criteria were included in this review: (1) published as a full-text manuscript; (2) not a review; (3) participants with ME/CFS; (4) studies employed a pacing intervention or retrospective analysis of pacing or a case study of pacing. Studies utilising sub-analysis of the pacing, graded activity, and cognitive behaviour therapy: a randomised evaluation (PACE) trial were included as these have different outcome measures and, as this is not a meta-analysis, this will not influence effect size estimates. Additionally, due to the paucity of evidence, grey literature has also been included in this review.

Search strategy

The search strategy consisted of a combination of free-text and MeSH terms relating to ME/CFS and pacing, which were developed through an examination of published original literature and review articles. Example search terms for PubMed included: ‘ME/CFS’ OR ‘ME’ OR ‘CFS’ OR ‘chronic fatigue syndrome’ OR ‘PEM’ OR ‘post exertional malaise’ OR ‘pene’ OR ‘post-exertion neurogenic exhaust’ AND ‘pacing’ OR ‘adaptive pacing’. The search was performed within title/abstract. Full search terms can be found in Additional file 1 .

Information sources

Six electronic databases [PubMed, Scholar, ScienceDirect, Scopus, Web of Science, and the Cochrane Central Register of Controlled Trials (CENTRAL)] were searched to identify original research articles published from the earliest available date up until 02/02/2022. Additional records were identified through reference lists of included studies. ‘Grey literature’ repositories including MEPedia, Action for ME, and ME Action were also searched with the same terms.

Study selection and data items

Once each database search was completed and manuscripts were sourced, all studies were downloaded into a single reference list (Zotero, version 6.0.23) and duplicates were removed. Titles and abstracts were screened for eligibility by two reviewers independently and discrepancies were resolved through discussion between reviewers. Subsequently, full text papers of potentially relevant studies were retrieved and assessed for eligibility by the same two reviewers independently. Any uncertainty by reviewers was discussed in consensus meetings and resolved by agreement. Data extracted from each study included sample size, participant characteristics, study design, trial registration details, study location, pacing description (type), intervention duration, intervention adherence, outcome variables, and main outcome data. Descriptions were extracted with as much detail as was provided by the authors. Study quality was assessed using the Physiotherapy Evidence Database (PEDro) scale [ 46 , 47 ].

Role of the funding source

The study sponsors had no role in study design, data collection, analysis, or interpretation, nor writing the report, nor submitting the paper for publication.

Study selection

After the initial database search, 281 records were identified (see Fig.  1 ). Once duplicates were removed, 177 titles and abstracts were screened for inclusion resulting in 22 studies being retrieved as full text and assessed for eligibility. Of those, five were excluded, and 17 articles remained and were used in the final qualitative synthesis.

Schematic flow diagram describing exclusions of potential studies and final number of studies. RCT = randomized control trial. CT = controlled trial. UCT = uncontrolled trial

Study characteristics

Study characteristics are summarised in Table 1 . Of the 17 studies included, three were randomised control trials (RCTs [ 35 , 48 , 49 ]); one was an uncontrolled trial [ 50 ]; one was a case series [ 51 ]; one was a retrospective observational study [ 52 ], two were prospective observational studies [ 53 , 54 ]; four were cross-sectional observational studies [ 25 , 55 , 56 ]; and five were cross-sectional analytical studies [ 57 , 58 , 59 , 60 , 61 ] including sub-analysis of the PACE trial [ 35 , 56 , 59 , 61 ]. Seven of the studies were registered trials [ 35 , 48 , 49 , 50 , 56 , 57 , 58 ]. Diagnostic criteria for ME/CFS are summarised in Table 2 .

Types of pacing

Pacing interventions.

Of the 17 studies included, five implemented their own pacing interventions and will be discussed in this section. Sample sizes ranged from n = 7 in an interventional case series [ 51 ] to n = 641 participants in the largest RCT [ 35 ]. The first of these five studies considered an education session on pacing and self-management as the ‘pacing’ group, and a ‘pain physiology education’ group as the control group [ 49 ]. Two studies included educational sessions provided by a therapist plus activity monitoring via ActiGraph accelerometers [ 51 ] and diaries [ 48 ] at baseline and follow-up. In the first of these two studies, Nijs and colleagues [ 51 ] implemented a ‘self-management program’ which asked patients to estimate their current physical capabilities prior to commencing an activity and then complete 25–50% less than their perceived energy envelope. They[ 51 ] did not include a control group and had a sample size of only n = 7. Six years later, the same research group [ 48 ] conducted another pacing study which utilised relaxation as a comparator group (n = 12 and n = 14 in the pacing and relaxation groups, respectively). The pacing group underwent a pacing phase whereby participants again aimed to complete 25–50% less than their perceived energy envelope, followed by a gradual increase in exercise after the pacing phase (the total intervention spanned three weeks, and it is unclear how much was allocated to pacing, and how much to activity increase). Therefore, it could be argued that Kos et al. [ 48 ] really assessed pacing followed by a gradual exercise increase as outcome measures were assessed following the graded activity phase. Another pacing intervention delivered weekly educational sessions for six weeks and utilised a standardised rehabilitation programme using the ‘activity pacing framework’ [ 50 ] in a single-arm, no comparator group feasibility study. Finally, the PACE trial adopted an adaptive pacing therapy intervention consisting of occupational therapists helping patients to plan and pace activities utilising activity diaries to identify activities associated with fatigue and staying within their energy envelope [ 35 ]. This study incorporated standard medical care, cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as comparator groups [ 35 ]. It is worth noting that the pacing group and the CBT group were both ‘encouraged’ to increase physical activity levels as long as participants did not exceed their energy envelope. Although not all five intervention studies explicitly mentioned the “Energy Envelope Theory”, which dictates that people with ME/CFS should not necessarily increase or decrease their activity levels, but moderate activity and practice energy conservation [ 62 ], all intervention studies used language analogous to this theory, such as participants staying within limits, within capacity, or similar.

The interventions included in this review were of varying durations, from a single 30-min education session [ 49 ], a 3-week (one session a week) educational programme [ 51 ], a 3-week (3 × 60–90 min sessions/week) educational programme [ 48 ], a 6-week rehabilitation programme [ 50 ], to a 24-week programme [ 35 ]. Intervention follow-up durations also varied across studies from immediately after [ 49 ], 1-week [ 51 ], 3-weeks [ 48 ], 3-months [ 50 ], and 1-year post-intervention [ 35 ].

Observational studies of pacing

Eight studies were observational and, therefore, included no intervention. Observational study sample sizes ranged from 16 in a cross-sectional interview study [ 25 ] to 1428 in a cross-sectional survey [ 52 ]. One study involved a retrospective analysis of participants’ own pacing strategies varying from self-guided pacing or pacing administered by a therapist compared with implementation of CBT and GET [ 52 ]. Five involved a cross-sectional analysis of participants own pacing strategies which varied from activity adjustment, planning and acceptance [ 50 , 55 ], and the Energy Envelope method [ 58 , 60 ]. Two studies were prospective observational studies investigating the Energy Envelope theory [ 53 , 54 ]. Four studies [ 56 , 57 , 59 , 61 ] included in this review involved sub-analysis of results of the PACE trial [ 35 ].

Outcome measures

Quantitative health outcomes.

ME/CFS severity and general health status were the most common outcome measures across studies (16/17) [ 35 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 63 ]. Studies utilised different instruments, including the Short-Form 36 (SF-36; 8/16) [ 35 , 51 , 53 , 54 , 56 , 57 , 58 , 60 ], SF-12 (2/16) [ 50 , 63 ], ME symptom and illness severity (2/16) [ 52 , 55 ], Patient health (PHQ-15; 1/16) [ 59 ], DePaul symptom questionnaire (DSQ; 1/16) [ 58 ], and the Patient health questionnaire-9 (1/16) [ 50 ]. Additionally, some studies used diagnostic criteria for ME/CFS as an outcome measure to determine recovery [ 57 , 59 , 61 ].

Pain was assessed by most included studies (11/17) [ 35 , 49 , 50 , 51 , 53 , 54 , 55 , 57 , 59 , 60 , 61 , 63 ]. Two studies [ 59 , 61 ] included the international CDC criteria for CFS which contain five painful symptoms central to a diagnosis of CFS: muscle pain and joint pain. Other methods of assessment included Brief Pain Inventory (1/11) [ 53 ], Chronic Pain Coping Inventory (CPCI; 1/11) [ 49 ], Pain Self Efficacy Questionnaire (PSEQ; 1/11) [ 50 ], Tampa Scale for Kinesiophobia–version CFS (1/11) [ 49 ], algometry (1/11) [ 49 ], Knowledge of Neurophysiology of Pain Test (1/12) [ 49 ], Pain Catastrophizing Scale (1/11) [ 49 ], Pain Anxiety Symptoms Scale short version (PASS-20; 1/11) [ 50 ], Pain Numerical Rating Scale (NRS; 1/11) [ 63 ].

Fatigue or post-exertional malaise was assessed by 11 of the 17 studies [ 35 , 48 , 50 , 51 , 53 , 54 , 56 , 57 , 60 , 61 , 63 ]. Again, measurement instruments were divergent between studies and included the Chalder Fatigue Questionnaire (CFQ; 4/11) [ 35 , 50 , 57 , 63 ], Fatigue Severity Scale (2/11) [ 53 , 60 ], the Chronic Fatigue Syndrome Medical Questionnaire (1/11) [ 60 ], and Checklist Individual Strength (CIS; 2/11) [ 48 , 51 ].

Anxiety and depression were also common outcome measures, utilised by four studies (4/17) [ 50 , 53 , 59 , 63 ]. These were also assessed using different instruments including Hospital Anxiety and Depression Scale (HADS; 2/4) [ 59 , 63 ], Generalised Anxiety Disorder Assessment (1/4 [ 50 ]), Beck Depression Inventory (BDI-II; 1/4) [ 53 ], Beck Anxiety Inventory (BAI; 1/4) [ 53 ], and Perceived Stress Scale (PSS; 1/4) [ 53 ].

Outcome measures also included sleep (2/17) [ 53 , 59 ], assessed by The Pittsburgh Sleep Quality Index (1/2) [ 53 ] and Jenkins sleep scale (1/2) [ 59 ]; and quality of life (2/17) [ 50 , 53 ] as assessed by the EuroQol five-dimensions, five-levels (EQ-5D-5L; 1/2) [ 50 ] and The Quality-of-Life Scale (1/2) [ 53 ]. Self-Efficacy was measured in four studies [ 50 , 53 , 59 , 60 ], assessed by the Brief Coping Orientation to Problems Experienced Scale (bCOPE; 1/4) [ 60 ] and the Chronic Disease Self-Efficacy measure (3/4) [ 50 , 53 , 59 ].

Quantitative evaluation of pacing

Some studies (4/17) [ 25 , 50 , 52 , 63 ] included assessments of the participants’ experiences of pacing, using the Activity Pacing Questionnaire (APQ-28; 1/4 [ 50 ], APQ-38 (2/4) [ 25 , 63 ]), a re-analysis of the 228 question survey regarding treatment (1/4) [ 52 ] originally produced by the ME Association [ 55 ], and qualitative semi-structured telephone interviews regarding appropriateness of courses in relation to individual patient needs (1/4) [ 25 ]. The APQ-28 and -38 have been previously validated, but the 228-question survey has not. When outcome measures included physical activity levels (4/17), the Canadian Occupational Performance Measure (COPM) was used in two studies [ 48 , 51 ], and two studies used accelerometers to record physical activity [ 51 , 54 ]. Of these two studies, Nijs [ 51 ] examined accelerometery after a 3-week intervention based on the Energy Envelope Theory and Brown et al. [ 54 ] evaluated the Energy Envelope Theory of pacing over 12 months.

Other outcomes

Two [ 53 , 59 ] of the 17 studies included structured clinical interviews for the Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV) to assess psychiatric comorbidity and psychiatric exclusions. One study included a disability benefits questionnaire [ 55 ], and one study included employment and education questionnaire [ 55 ]. Additionally, satisfaction of primary care was also used as an outcome measure (2/17) [ 25 , 55 ] assessed using the Chronic Pain Coping Inventory (CPCI).

Efficacy of pacing interventions

The majority of studies (12/17) [ 25 , 48 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 58 , 60 , 63 ] highlighted improvements in at least one outcome following pacing (Fig.  2 ). When the effect of pacing was assessed by ME symptomology and general health outcomes, studies reported pacing to be beneficial [ 25 , 50 , 51 , 53 , 54 , 55 , 56 , 58 ]. It is worth noting however that pacing reportedly worsened ME symptoms in 14% of survey respondents, whilst improving symptoms in 44% of respondents [ 52 ]. Most studies using fatigue as an outcome measure reported pacing to be efficacious (7/10) [ 50 , 51 , 53 , 54 , 56 , 60 , 63 ]. However, one study reported no change in fatigue with a pacing intervention (1/10) [ 35 ], and 2/10 studies [ 53 , 63 ] reported a worsening of fatigue with pacing. Physical function was used to determine the efficacy of pacing in 11 studies [ 35 , 48 , 50 , 51 , 53 , 54 , 56 , 58 , 59 , 60 , 63 ]. Of these, the majority found pacing improved physical functioning (8/10) [ 48 , 50 , 51 , 53 , 54 , 56 , 58 , 60 ], with 1/10 [ 35 ] studies reporting no change in physical functioning, and 1/10 [ 59 ] reporting a worsening of physical functioning from pre- to post-pacing. Of the seven studies [ 35 , 49 , 50 , 51 , 53 , 54 , 60 ] which used pain to assess pacing efficacy, 4/7 [ 50 , 51 , 53 , 60 ] reported improvements in pain and 3/7 [ 35 , 51 , 53 ] reported no change in pain scores with pacing. All studies reporting quality of life (1/1) [ 53 ], self-efficacy (3/3) [ 50 , 53 , 59 ], sleep (2/2) [ 53 , 59 ], and depression and anxiety (4/4) [ 50 , 53 , 59 , 63 ], found pacing to be efficacious for ME/CFS participants.

Bubble plot displaying number of studies reporting each domain (x-axis) and the percentage of studies reporting improvement with pacing (y-axis), including a coloured scale of improvement from 0–100%. PEM = post-exertional malaise, 6MWT = 6-min walk time, CFS = chronic fatigue syndrome, DSQ = DePaul Symptom Questionnaire, PA = Physical Activity, HRQOL = Health-related quality of life, COPM = The Canadian Occupational Performance Measure

Participant characteristics

The majority of studies (10/17) [ 25 , 50 , 52 , 53 , 54 , 58 , 59 , 60 , 61 , 63 ] did not report age of the participants. For those which did report age, this ranged from 32 ± 14 to 43 ± 13 years. Where studies reported sex (11/17) [ 35 , 48 , 49 , 50 , 51 , 54 , 55 , 56 , 57 , 58 , 60 ], this was predominantly female, ranging from 75 to 100% female. Only six studies [ 35 , 54 , 56 , 57 , 58 , 60 ] reported ethnicity, with cohorts predominantly Caucasian (94–98%). Time since diagnosis was mostly unreported (12/17) [ 25 , 48 , 49 , 50 , 52 , 53 , 54 , 58 , 59 , 60 , 61 , 63 ] but ranged from 32 to 96 months, with a cross-sectional survey reporting 2% of the participants were diagnosed 1–2 years previously; 6% 3–4 years since diagnosis; 13% 3–4 years since diagnosis; 12% 5–6 years since diagnosis; 20% 7–10 years since diagnosis; 29% 11–21 years since diagnosis; 13% 21–30 years since diagnosis; and 5% > 30 years since diagnosis. Of the studies which reported comorbidities of the participants (6/17) [ 25 , 35 , 50 , 56 , 57 , 63 ], the comorbidities were chronic pain, depressive disorder, psychiatric disorder.

Study location

Of the 17 studies, 14 were from Europe [ 25 , 35 , 48 , 49 , 50 , 51 , 52 , 55 , 56 , 57 , 58 , 59 , 61 , 63 ], and three from North America [ 53 , 54 , 60 ]. Of the 14 studies[ 25 , 35 , 48 , 49 , 50 , 51 , 52 , 55 , 56 , 57 , 58 , 59 , 61 , 63 ] from Europe, ten [ 25 , 35 , 50 , 52 , 55 , 56 , 57 , 58 , 59 , 61 , 63 ] were conducted in the United Kingdom, three in Belgium [ 48 , 49 , 51 ], and one was a multicentred study between the United Kingdom and Norway [ 58 ].

Recruitment strategy

Of the 17 studies, three [ 53 , 54 , 60 ] used announcements in a newspaper and physician referrals to recruit participants, two [ 50 , 63 ] recruited patients referred by a consultant from a National Health Service (NHS) Trust following a pain diagnosis, two [ 52 , 55 ] concerned online platforms on the web, two [ 59 , 61 ] recruited from secondary care clinics, and two used the PACE trial databases [ 56 , 57 ]. Moreover, one study recruited from the hospital [ 58 ], one from physiotherapist referrals [ 25 ], two from specialist clinic centres [ 35 , 64 ], one from waiting list of rehabilitation centre [ 48 ], and one from medical files [ 49 ].

Study settings

Ten studies were carried out in hospital and clinic setting [ 25 , 35 , 48 , 49 , 50 , 51 , 58 , 59 , 61 , 63 ]. Two studies were performed on online platforms [ 52 , 55 ]. Three studies did not report study setting [ 53 , 54 , 60 ]. Two studies generated output from PACE trial databases [ 56 , 57 ]

Adherence and feasibility

All five intervention studies reported adherence rates (which they defined as number of sessions attended), which ranged from 4–44% (4% [ 49 ], 8% [ 35 ], 25% [ 48 ], 29% [ 51 ], and 44% [ 50 ]). One study reported the median number of rehabilitation programme sessions attended was five out of six possible sessions, with 58.9% [ 50 ] participants attending ≥ 5 sessions; 83.2% participants attending at least one educational session on activity pacing and 56.1% attending both activity pacing sessions.

This scoping review summarises the existing literature, with a view to aid physicians and healthcare practitioners better summarise evidence for pacing in ME/CFS and use this knowledge for other post-viral fatiguing conditions. Overall, studies generally reported pacing to be beneficial for people with ME/CFS. The exception to this trend is the controversial PACE trial [ 36 , 37 , 38 , 39 ], which we will expand on in subsequent sections. We believe information generated within this review can facilitate discussion of research opportunities and issues that need to be addressed in future studies concerning pacing, particularly given the immediate public health issue of the long COVID pandemic. As mentioned, we found some preliminary evidence for improved symptoms following pacing interventions or strategies. However, we wish to caution the reader that the current evidence base is extremely limited and hampered by several limitations which preclude clear conclusions on the efficacy of pacing. Firstly, studies were of poor to fair methodological quality (indicated by the PEDro scores), often with small sample sizes, and therefore unknown power to detect change. Moreover, very few studies implemented pacing, with most studies merely consulting on people’s views on pacing. This may of course lead to multiple biases such as reporting, recruitment, survivorship, confirmation, availability heuristic, to name but a few. Thus, there is a pressing need for more high-quality intervention studies. Secondly, the reporting of pacing strategies used was inconsistent and lacked detail, making it difficult to describe current approaches, or implement them in future research or symptom management strategies. Furthermore, outcome evaluations varied greatly between studies. This prevents any appropriate synthesis of research findings.

The lack of evidence concerning pacing is concerning given pacing is the only NICE recommended management strategy for ME/CFS following the 2021 update [ 34 ]. Given the analogous nature of long COVID with ME/CFS, patients and practitioners will be looking to the ME/CFS literature for guidance for symptom management. There is an urgent need for high quality studies (such as RCTs) investigating the effectiveness of pacing and better reporting of pacing intervention strategies so that clear recommendations can be made to patients. If this does not happen soon, there will be serious healthcare and economic implications for years to come [ 65 , 66 ].

Efficacy of pacing

Most studies (12/17) highlighted improvements in at least one outcome measure following pacing. Pacing was self-reported to be the most efficacious, safe, acceptable, and preferred form of activity management for people with ME/CFS [ 55 ]. Pacing was reported to improve symptoms and improve general health outcomes [ 25 , 50 , 52 , 58 , 63 ], fatigue and PEM [ 48 , 50 , 51 , 53 , 54 , 55 , 56 , 60 , 63 ], physical functioning [ 48 , 50 , 51 , 53 , 56 , 58 , 60 , 63 ], pain [ 25 , 50 , 55 , 63 ], quality of life [ 50 ], self-efficacy [ 50 , 53 ], sleep [ 53 , 55 ], and depression and anxiety [ 50 , 53 , 63 ]. These positive findings provide hope for those with ME/CFS, and other chronic fatiguing conditions such as long COVID, to improve quality of life through symptom management.

Conversely, some studies reported no effects of pacing on ME/CFS symptoms [ 52 ], fatigue, physical functioning [ 35 ], or pain scores [ 49 , 61 ]. Some studies even found pacing to have detrimental effects in those with ME/CFS, including a worsening of symptoms in 14% of survey participants recalling previous pacing experiences [ 52 ]. Furthermore, a worsening of fatigue [ 35 , 59 ], and physical functioning from pre- to post-pacing [ 35 , 57 , 59 , 61 ] was reported by the PACE trial and sub-analysis of the PACE trial [ 56 , 57 , 61 ]. The PACE trial [ 35 ], a large RCT (n = 639) comparing pacing with CBT and GET, reported GET and CBT were more effective for reducing ME/CFS-related fatigue and improving physical functioning than pacing. However, the methodology and conclusions from the PACE trial have been heavily criticised, mainly due to the authors lowering the thresholds they used to determine improvement [ 36 , 37 , 38 , 67 ]. With this in mind, Sharpe et al. [ 56 ] surveyed 75% of the participants from the PACE trial 1-year post-intervention and reported pacing improved fatigue and physical functioning, with effects similar to CBT and GET.

Lessons for pacing implementation

All pacing intervention studies (5/5) implemented educational or coaching sessions. These educational components were poorly reported in terms of the specific content and how and where they had been developed, with unclear pedagogical approaches. Consequently, even where interventions reported reduction in PEM or improved symptoms, it would be impossible to transfer that research into practice, future studies, or clinical guidance, given the ambiguity of reporting. Sessions typically contained themes of pacing such as activity adjustment (decrease, break-up, and reschedule activities based on energy levels), activity consistency (maintaining a consistently low level of activity to prevent PEM), activity planning (planning activities and rest around available energy levels), and activity progression (slowly progressing activity once maintaining a steady baseline) [ 35 , 48 , 49 , 50 , 51 ]. We feel it is pertinent to note here that although activity progression has been incorporated as a pacing strategy in these included studies, some view activity progression as a form of GET. The NICE definition of GET is “first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active” [ 34 ]. Thus, this form of pacing can also be considered a type of ‘long-term GET’ in which physical activity progression is performed over weeks or months with fixed incremental increases in time spent being physically.

Intervention studies attempted to create behaviour change, through educational programmes to modify physical activity, and plan behaviours. However, none of these studies detailed integrating any evidence-based theories of behaviour change [ 68 ] or reported using any frameworks to support behaviour change objectives. This is unfortunate since there is good evidence that theory-driven behaviour change interventions result in greater intervention effects [ 69 ]. Indeed, there is a large body of work regarding methods of behaviour change covering public health messaging, education, and intervention design, which has largely been ignored by the pacing literature. Interventions relied on subjective pacing (5/5 studies), with strategies including keeping an activity diary (3/5 studies) to identify links between activity and fatigue [ 35 , 48 , 50 ]. Given the high prevalence of ‘brain fog’ within ME/CFS [ 70 , 71 , 72 , 73 ], recall may be extremely difficult and there is significant potential for under-reporting. Other strategies included simply asking participants to estimate energy levels available for daily activities (2/5 studies [ 48 , 51 ]). Again, this is subjective and relies on participants’ ability to recall previous consequences of the activity. Other methods of activity tracking and measuring energy availability, such as wearable technology [ 74 , 75 , 76 , 77 , 78 ] could provide a more objective measure of adherence and pacing strategy fidelity in future studies. Despite technology such as accelerometers being widely accessible since well-before the earliest interventional study included in this review (which was published in 2009), none of the interventional studies utilised objective activity tracking to track pacing and provide feedback to participants. One study considered accelerometery alongside an activity diary [ 51 ]. However, accelerometery was considered the outcome variable, to assess change in activity levels from pre- to post-intervention and was not part of the intervention itself (which was one pacing coaching sessions per week for 3 weeks). Moreover, most research-grade accelerometers cannot be used as part of the intervention since they have no ability to provide continuous feedback and must be retrieved by the research team in order to access any data. Consequently, their use is mostly limited to outcome assessments only. As pacing comprises a limit to physical activity to prevent push-crash cycles, it is an astonishing observation from this scoping review that only two studies objectively measured physical activity to quantify changes to activity as a result of pacing [ 51 , 54 ]. If the aim of pacing is to reduce physical activity, or reduce variations in physical activity (i.e., push-crash cycles), only two studies have objectively quantified the effect pacing had on physical activity, so it is unclear whether pacing was successfully implemented in any of the other studies.

By exploring the pacing strategies previously used, in both intervention studies and more exploratory studies, we can identify and recommend approaches to improve symptoms of ME/CFS. These approaches can be categorised as follows: activity planning, activity consistency, activity progression, activity adjustment and staying within the Energy Envelope [ 50 , 53 , 60 , 63 ]. Activity planning was identified as a particularly effective therapeutic strategy, resulting in improvement of mean scores of all symptoms included in the APQ-28, reducing current pain, improvement of physical fatigue, mental fatigue, self-efficacy, quality of life, and mental and physical functioning [ 50 ]. Activity planning aligns with the self-regulatory behaviour change technique ‘Action Planning’ [ 79 ] which is commonly used to increase physical activity behaviour. In the case of ME/CFS, activity planning is successfully used to minimise rather than increase physical activity bouts to prevent expending too much energy and avoid PEM. Activity consistency, meaning undertaking similar amounts of activity each day, was also associated with reduced levels of depression, exercise avoidance, and higher levels of physical function [ 63 ]. Activity progression was associated with higher levels of current pain. Activity adjustment associated with depression and avoidance, and lower levels of physical function [ 63 ]. Staying within the Energy Envelope was reported to reduce PEM severity [ 53 , 60 ], improve physical functioning [ 53 , 60 ] and ME/CFS symptom scores [ 53 ], and more hours engaged in activity than individuals with lower available energy [ 53 ]. These results suggest that effective pacing strategies would include activity planning, consistency, and energy management techniques while avoiding progression. This data is, of course, limited by the small number of mostly low-quality studies and should be interpreted with some caution. Nevertheless, these are considerations that repeatedly appear in the literature and, as such, warrant deeper investigation. In addition, and as outlined earlier, most studies are relatively old, and we urgently need better insight into how modern technologies, particularly longitudinal activity tracking and contemporaneous heart-rate feedback, might improve (or otherwise) adaptive pacing. Such longitudinal tracking would also enable activities and other behaviours (sleep, diet, stress) to be linked to bouts of PEM. Linking would enable a deeper insight into potential PEM triggers and mitigations that might be possible.

The PACE trial

We feel it would be remiss of us to not specifically address the PACE trial within this manuscript, as five of the 17 included studies resulted from the PACE trial [ 35 , 56 , 57 , 59 , 61 ]. There has been considerable discussion around the PACE trial, which has been particularly divisive and controversial [ 37 , 38 , 39 , 59 , 67 , 80 , 81 ]. In the PACE trial, GET and CBT were deemed superior to pacing by the authors. Despite its size and funding, the PACE trial has received several published criticisms and rebuttals. Notably, NICE's most recent ME/CFS guideline update removed GET and CBT as suggested treatment options, which hitherto had been underpinned by the PACE findings. While we will not restate the criticisms and rebuttals here, what is not in doubt, is that the PACE trial has dominated discussions of pacing, representing almost a third of all the studies in this review. However, the trial results were published over a decade ago, with the study protocol devised almost two decades ago [ 82 ]. The intervening time has seen a revolution in the development of mobile and wearable technology and an ability to remotely track activity and provide real-time feedback in a way which was not available at that time. Furthermore, there has been no substantive research since the PACE trial that has attempted such work. Indeed, possibly driven by the reported lack of effect of pacing in the PACE trial, this review has demonstrated the dearth of progress and innovation in pacing research since its publication. Therefore, regardless of its findings or criticisms, the pacing implementation in the PACE trial is dated, and there is an urgent need for more technologically informed approaches to pacing research.

Limitations of the current evidence

The first limitation to the literature included in this scoping review is that not all studies followed the minimum data set (MDS) of patient-reported outcome measures (PROMs) agreed upon by the British Association of CFS/ME Professionals (BACME) (fatigue, sleep quality, self-efficacy, pain/discomfort, anxiety/depression, mobility, activities of daily living, self-care, and illness severity) [ 83 , 84 ]. All but one study included in this review measured illness severity, most studies included fatigue and pain/discomfort, and some studies included assessments of anxiety/depression. There was a lack of quantitative assessment of sleep quality, self-efficacy, mobility, activities of daily living, and self-care. Therefore, studies did not consistently capture the diverse nature of the symptoms experienced, with crucial domains missing from the analyses. The MDS of PROMs were established in 2012 [ 83 , 84 ] and therefore, for studies published out prior to 2012, these are not applicable [ 35 , 49 , 51 , 53 , 54 ]. However, for the 12 studies carried out after this time, the MDS should have been considered elucidate the effects of pacing on ME/CFS. Importantly, despite PEM being a central characteristic of ME/CFS, only two studies included PEM as an outcome measure [ 55 , 60 ]. This may be because of the difficulty of accurately measuring fluctuating symptoms, as PEM occurs multiple times over a period of months, and therefore pre- to post- studies and cross-sectional designs cannot adequately capture PEM incidence. Therefore, it is likely studies opted for measuring general fatigue instead. More appropriate longitudinal study designs are required to track PEM over time to capture a more representative picture of PEM patterns. Secondly, reporting of participant characteristics was inadequate, but in the studies that did describe participants, characteristics were congruent with the epidemiological literature and reporting of ME/CFS populations (i.e., 60–65% female) [ 85 ]. Therefore, in this respect, studies included herein were representative samples. However, the lack of reporting of participant characteristics limits inferences we can draw concerning any population-related effects (i.e. whether older, or male, or European, or people referred by a national health service would be more or less likely to respond positively to pacing). Thirdly, comparison groups (where included) were not ideal, with CBT or GET sometimes used as comparators to pacing [ 35 ], and often no true control group included. Penultimately, there is a distinct lack of high-quality RCTs (as mentioned throughout this manuscript). Finally, in reference to the previous section, inferences from the literature are dated and do not reflect the technological capabilities of 2023.

Recommendations for advancement of the investigative area

It is clear from the studies included in this scoping review for the last decade or more, progress and innovation in pacing research have been limited. This is unfortunate for several reasons. People with ME/CFS or long COVID are, of course, invested in their recovery. From our patient and public involvement (PPI) group engagement, it is clear many are ahead of the research and are using wearable technology to track steps, heart rate, and, in some cases, heart rate variability to improve their own pacing practice. While the lack of progress in the research means this is an understandable response by patients, it is also problematic. Without underpinning research, patients may make decisions based on an individual report of trial-and-error approaches given the lack of evidence-based guidance.

A more technologically-informed pacing approach could be implemented by integrating wearable trackers [ 77 , 78 , 86 , 87 ] to provide participants with live updates on their activity and could be integrated with research-informed messaging aimed at supporting behaviour change, as has been trialled in other research areas [ 88 , 89 , 90 , 91 ]. However, more work is needed to evaluate how to incorporate wearable activity trackers and which metrics are most helpful.

A more technologically-informed approach could also be beneficial for longitudinal symptom tracking, particularly useful given the highly variable symptom loads of ME/CFS and episodic nature of PEM. This would overcome reliance on assessments at a single point in time (as the studies within this review conducted). Similarly, mobile health (mHealth) approaches also allow questionnaires to be digitised to make it easier for participants to complete if they find holding a pen or reading small font problematic [ 92 ]. Reminders and notifications can also be helpful for patients completing tasks [ 77 , 93 , 94 , 95 ]. This approach has the added advantage of allowing contemporaneous data collection rather than relying on pre- to post-intervention designs limited by recall bias. Future work must try to leverage these approaches, as unless we collect large data sets on symptoms and behaviours (i.e. activity, diet, sleep, and pharmacology) in people with conditions like ME/CFS we will not be able to leverage emerging technologies such as AI and machine learning to improve the support and care for people with these debilitating conditions. The key areas for research outline in the NICE guidelines (2021 update) speaks to this, with specific mention of improved self-monitoring strategies, sleep strategies, and dietary strategies, all of which can be measured using mHealth approaches, in a scalable and labour-inexpensive way.

The potential for existing pacing research to address the long COVID pandemic

There is now an urgent public health need to address long COVID, with over 200 million sufferers worldwide [ 30 ]. Given the analogous symptomology between ME/CFS and long COVID, and the lack of promising treatment and management strategies in ME/CFS, pacing remains the only strategy for managing long COVID symptoms. This is concerning as the quality of evidence to support pacing is lacking. Given long COVID has reached pandemic proportions, scalable solutions will be required. In this context, we propose that technology should be harnessed to a) deliver, but also b) evaluate, pacing. We recently reported on a just-in-time adaptive intervention to increase physical activity during the pandemic [ 78 ]. However, this method could be adapted to decrease or maintain physical activity levels (i.e., pacing) in long COVID. This method has the advantage of scalability and remote data collection, reducing resource commitments and participant burden, essential for addressing a condition with so many sufferers.

This review highlights the need for more studies concerning pacing in chronic fatiguing conditions. Future studies would benefit from examining pacing’s effect on symptomology and PEM with objectively quantified pacing, over a longer duration of examination, using the MDS. It is essential this is conducted as an RCT, given that in the case of long COVID, participants may improve their health over time, and it is necessary to determine whether pacing exerts an additional effect over time elapsing. Future studies would benefit from digitising pacing to support individuals with varying symptom severity and personalise support. This would improve accessibility and reduce selection bias, in addition to improving scalability of interventions. Finally, clinicians and practitioners should be cognisant of the strength of evidence reported in this review and should exert caution when promoting pacing in their patients, given the varying methods utilised herein.

Availability of data and materials

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Activity Pacing Questionnaire

Beck Anxiety Inventory

Beck Depression Inventory

Brief Coping Orientation to Problems Experienced Scale

Canadian Occupational Performance Measure

Centers for disease control and prevention

Chalder Fatigue Questionnaire

Checklist Individual Strength

Chronic Pain Coping Inventory

Cognitive behavioural therapy

Cochrane Central Register of Controlled Trials

DePaul symptom questionnaire

EuroQol five-dimensions, five-levels questionnaire

Graded exercise therapy

Hospital Anxiety and Depression Scale

Myalgic encephalomyelitis/chronic fatigue syndrome

Pain Self Efficacy Questionnaire

Pain Anxiety Symptoms Scale short version

Pain Numerical Rating Scale

Patient health questionnaire

Patient reported outcome measures

Physiotherapy Evidence Database

Perceived Stress Scale

Post exertional malaise

Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews

Randomised control trial

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Authors’ contributions are given according to the CRediT taxonomy as follows: Conceptualization, N.E.M.S–H., M.M., L.D.H, and N.F.S.; methodology, N.E.M.S–H., M.M., L.D.H., and N.F.S.; software, N.E.M.S–H., M.M., L.D.H., and N.F.S.B.; validation, N.E.M.S–H., M.M., L.D.H, and N.F.S.; formal analysis, N.E.M.S–H., M.M., L.D.H., and N.F.S.; investigation, N.E.M.S–H., M.M., L.D.H., and N.F.S.; resources, L.D.H., J.O., D.C., N.H., J.L.M., and N.F.S.; data curation, N.E.M.S.-H., M.M., L.D.H., and N.F.S.; writing—original draft preparation, N.E.M.S.-H., M.M., L.D.H., and N.F.S.; writing—review and editing, N.E.M.S–H., M.M., L.D.H., J.O., D.C., N.H., R.M., J.L.M., J.I., and N.F.S.; visualisation, N.E.M.S–H. and M.M., supervision, N.F.S; project administration, N.E.M.S–H., M.M., L.D.H., and N.F.S.; funding acquisition, L.D.H., J.O., D.C., N.H., J.L.M., J.I., and N.F.S. All authors have read and agreed to the published version of the manuscript.

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Sanal-Hayes, N.E.M., Mclaughlin, M., Hayes, L.D. et al. A scoping review of ‘Pacing’ for management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): lessons learned for the long COVID pandemic. J Transl Med 21 , 720 (2023). https://doi.org/10.1186/s12967-023-04587-5

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Mental Health Research During the COVID-19 Pandemic: Focuses and Trends

Yaodong liang.

1 Law School, Changsha University, Changsha, China

2 Department of Psychology, University of Toronto St. George, Toronto, ON, Canada

3 Centre for Mental Health and Education, Central South University, Changsha, China

Associated Data

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

The COVID-19 pandemic has profoundly influenced the world. In wave after wave, many countries suffered from the pandemic, which caused social instability, hindered global growth, and harmed mental health. Although research has been published on various mental health issues during the pandemic, some profound effects on mental health are difficult to observe and study thoroughly in the short term. The impact of the pandemic on mental health is still at a nascent stage of research. Based on the existing literature, we used bibliometric tools to conduct an overall analysis of mental health research during the COVID-19 pandemic.

Researchers from universities, hospitals, communities, and medical institutions around the world used questionnaire surveys, telephone-based surveys, online surveys, cross-sectional surveys, systematic reviews and meta-analyses, and systematic umbrella reviews as their research methods. Papers from the three academic databases, Web of Science (WOS), ProQuest Academic Database (ProQuest), and China National Knowledge Infrastructure (CNKI), were included. Their previous research results were systematically collected, sorted, and translated and CiteSpace 5.1 and VOSviewers 1.6.13 were used to conduct a bibliometric analysis of them.

Authors with papers in this field are generally from the USA, the People's Republic of China, the UK, South Korea, Singapore, and Australia. Huazhong University of Science and Technology, Hong Kong Polytechnic University, and Shanghai Jiao Tong University are the top three institutions in terms of the production of research papers on the subject. The University of Toronto, Columbia University, and the University of Melbourne played an important role in the research of mental health problems during the COVID-19 pandemic. The numbers of related research papers in the USA and China are significantly larger than those in the other countries, while co-occurrence centrality indexes in Germany, Italy, England, and Canada may be higher.

We found that the most mentioned keywords in the study of mental health research during the COVID-19 pandemic can be divided into three categories: keywords that represent specific groups of people, that describe influences and symptoms, and that are related to public health policies. The most-cited issues were about medical staff, isolation, psychological symptoms, telehealth, social media, and loneliness. Protection of the youth and health workers and telemedicine research are expected to gain importance in the future.

Introduction

Although the impacts of the COVID-19 pandemic will be recorded in human medical history and in socio-economic history, various psychological consequences regarding mental health among populations cannot be ignored, including stress, anxiety, depression, frustration, insomnia, and so on. Researchers from universities, hospitals, communities, and medical institutions worldwide have been focusing on mental health problems during the pandemic. They have used questionnaire surveys, telephone-based surveys, online surveys, cross-sectional surveys, systematic reviews and meta-analysis, and systematic umbrella reviews to investigate mental health problems during the pandemic. Two years after the outbreak of the COVID-19, the pandemic has gradually subsided in some countries, while others have adopted a strategy of coexisting with the virus. If more deadly mutant strains do not appear in the future, it is very likely that the pandemic will not climax again. It is pertinent to summarize and study mental health research during the pandemic, because many psychological problems have arisen as a result, and there has been significant interest in research on such issues in the previous two years.

As an effective quantitative analysis method, bibliometrics can be used not only to assess the quality and quantity of published papers, but also to explore research focuses and trends, the distribution of authors and institutions, the impact of publications, journals, and different countries regarding research contributions to the theme. Due to the rapid growth in research in this area, there are now over 1,000 academic papers, and accordingly, it would appear necessary to investigate important, valid, and meaningful information from large databases to guide scientific research. The authors used CiteSpace and VOSviewers to determine the focuses and trends in this regard.

Data Analysis and Visualization

The authors searched the Web of Science (WOS), ProQuest Academic Database (ProQuest), and China National Knowledge Infrastructure (CNKI) to extract publications related to mental health and COVID-19. Their previous research results were systematically collected, sorted, and translated, and CiteSpace 5.1 and VOSviewers 1.6.13 were used to conduct a bibliometric analysis of them.

Data Source and Search Strategy

Our team selected 1,226 papers from 2019 to 2022 using three combinations of keywords, mental health and COVID-19, mental health and new coronavirus, and mental health and novel coronavirus, from the three academic paper databases, WOS, ProQuest, and CNKI. Two explanations are necessary here, the first is about the keywords and the second is about the databases. (1) The reason we used new or novel coronavirus as keywords was that the name COVID-19 has not been determined about 2 years ago. In order not to miss relevant research results, we also included these synonyms as keywords for the search. (2) Among the three databases, WOS and ProQuest, in which most of the English-language papers were published, are well-known to scholars all around the world. However, the CNKI database is not as popular as WOS or ProQuest given that most of the papers in CNKI were published in Chinese. We chose to use the CNKI data for the following three reasons: first, China was the most affected country during the COVID-19 outbreak and Chinese academic journals published significant research on mental health. Second, CNKI is the largest Chinese academic database. Third, after the outbreak, the Chinese government's virus clearance policy has been implemented and continues to date. Strict control has helped suppress the spread of the virus, but has also likely had mental health implications, given the severe reduction in social interactions. Therefore, we think that the Chinese database is appropriate and useful in this study.

About 50% of the articles were from the WOS, about 10% of the articles from ProQuest, and about 40% from CNKI. Basic information such as title, author, institution, country, abstract, keywords, methods, results, and conclusions of all articles, if not in English, are translated into English and analyzed using SiteSpaceII and VOSviewers. Since the keywords include COVID-19 and mental health, synonyms such as novel coronavirus and psychological distress spontaneously appeared while searching. Words that are closely related to the subject, such as public health, quarantine, and insomnia, were most frequently mentioned.

Most articles were published during the period from February 2020 to July 2022, including those pre-published online from April to July, and only one article that had been published in 2019 was included. Judging from the line chart above, since the volume of COVID-19 and mental health-related articles had already risen two times in June 2020 and June 2021 and then remained low until now, it is high time to conclude a previous study on COVID-19 and mental health, to sort out the foci of those studies, and to analyze and predict future trends ( Figure 1 ).

The volume of COVID-19 and mental health-related articles in 2020–2022.

Scholars from around the world have contributed to the study of mental health issues during the COVID-19 pandemic. The top 10 countries with the largest quantum of publications related to mental health during COVID-19 are the USA, People's Republic of China, England, Canada, Australia, India, Italy, Japan, Iran, and Germany. Wide and active participation of several countries has laid a solid foundation for its future development. Universities, hospitals, communities, and medical institutions around the world have conducted sample surveys of patients, students, community residents, medical workers, and other sample populations of considerable sample sizes since the outbreak. Survey and research methods include questionnaire survey, telephone-based survey, online survey, cross-sectional survey, systematic review and meta-analyses, and systematic umbrella review ( Table 1 ).

Top 20 countries.

Most papers are from the USA, the People's Republic of China, England, Australia, Canada, India, Italy, Iran, Japan, and Germany. Judging from the country or region co-occurrence graph, England and Canada are in the center of this graph, with India, Poland, Denmark, Spain, South Korea, Portugal, Italy, and Canada around them. England, Australia, Canada, Japan, Brazil, India, Iran, and Germany have done significant research work in this field. In addition, the number of related research papers in the USA and China is significantly larger than that in all other countries ( Figure 2 ).

Country or region co-occurrence.

In Table 2 , we can see that most names of the top 20 authors are Asian names, and they are mainly from China. Six of them published more than 10 articles by the end of 2021. In the extended ranking, we find that the authors who have published a large number of papers are generally from the USA, China, the UK, South Korea, Singapore, and Australia. The authors Griffiths MD, Cheung T, Xiang Y, Lin C, Wang Y, and Zhang L were very active in this field of study.

Top 20 authors.

In the abovementioned graphs, we can see six groups of related authors. The VOSviewer was used to describe the partnership between them. Though six colors were used to separate these groups, there were still lines connecting the groups to represent the partnership between them. We can take Cheung T and Xiang Y as the center of the largest group. Another group with Griffiths MD and Lin C as its center was also significant ( Figures 3 , ​ ,4 4 ).

Author co-occurrence.

Author co-occurrence groups.

The top five institutions are Huazhong University of Science and Technology, Hong Kong Polytechnic University, Shanghai Jiao Tong University, Columbia University, and the University of Toronto. Meanwhile, the top five institutions in centrality are the University of Macau, the University of Melbourne, Columbia University, Wuhan University, and the University of Toronto. It is worth mentioning that Huazhong University of Science and Technology and Wuhan University are located in the city of Wuhan, one of the areas most affected by the virus through the outbreak. The society and economy of the city temporarily stagnated at the time, and its medical system was once paralyzed. Eventually, Wuhan City's medical system was fully recovered. The University of Toronto, Columbia University, and the University of Melbourne have played an important role in the research of mental health problems during the COVID-19 pandemic ( Table 3 and Figure 5 ).

Top 20 institutions.

Institutions' co-occurrence.

As can be seen in Figure 6 , Huazhong University of Science and Technology has led Chinese universities and research institutions, such as Shanghai Jiao Tong University and Peking University, in conducting research on COVID-19 and mental health. Hong Kong Polytechnic University, Fudan University, and the University of Melbourne acted as bridges, connecting famous universities and research institutions in Europe, America, and other countries in the world, such as Kings College London and Harvard Medical School, to jointly study issues in this field. In particular, they conduct joint research, directly or indirectly, through Hong Kong Polytechnic University, which display the important communication and joint role of Hong Kong Polytechnic University.

Keyword clustering.

Judging from Table 4 , the most mentioned keywords, in addition to COVID-19 and mental health, can be roughly divided into three categories: (1) keywords representing specific groups of people, such as adolescents, young adults, doctors, nurses, medical staff, and healthcare workers; (2) keywords describing influences and symptoms, such as isolation, loneliness, anxiety, depression, stress, and insomnia; and (3) keywords related to public health policies, such as lockdown, social distancing, telehealth, telemedicine, and quarantine.

Keyword clustering I.

In Graph 7, we can judge that COVID-19, mental health, pandemic, and coronavirus are represented by larger red dots as their centrality indexes are naturally higher. In this bibliometric network map, other keywords emerged next to them and together formed this visualization bibliometric network. Occupational and sociodemographic characteristics are clustered together, while symptoms of mental health problems are clustered next to them. Specific groups of people and their typical symptoms and causes occupy certain areas on the map. For example, typical symptoms of university students and the possible causes of these symptoms are grouped together on the map. Similarly, quarantine policy and its influence are also classified in certain areas. In addition, research methods and solutions appeared sporadically on this map.

Table 5 shows eight groups of core keywords separated from keyword clustering I. Each of these groups contains three keywords, which proves that these keywords appear at the same time in a considerable part of the research, and are more closely related. Keyword ClusteringII cannot only present the outline of existing mental health research in academia, but also highlights the focus of research. In addition, SiteSpaceII and VOSviewers also gave us some clues about the research trends and further development.

Keyword clustering II.

Research Focuses

Medical staff.

The COVID-19 pandemic has exacerbated mental health problems among populations, especially medical staff, patients with COVID-19, chronic disease patients, and isolated people. Doctors, nurses, and other medical staff have significantly higher rates of insomnia than other populations ( 1 ). The researchers obtained the relevant demographic data through the WeChat questionnaire survey. Questions in the questionnaire are related to insomnia, depression, anxiety, and stress-related symptoms during the pandemic. Their research found that, since the outbreak, more than one-third of the medical staff suffered from symptoms of insomnia. Psychological intervention measures were necessary for those people ( 2 ). Research within medical institutions shows that the psychological pressure of medical staff in isolation wards was greater, but had also attracted greater attention from hospital administrators. The concern of hospital managers alleviated the pressure of medical staff to a certain extent. Further, concern for the public also reduced their psychological burden. In terms of anxiety about infection and fatigue factors, the research results showed that the psychological burden of nurses was heavier than that of doctors. Healthcare workers who lived with their own children showed more obvious fatigue and anxiety, which might be due to the fear of their children becoming infected. In terms of workload and work motivation, medical staff who have been working for more than 20 years have a heavier workload, but they can still maintain their enthusiasm to fight against the pandemic ( 3 ). Another survey showed that 73.4% of healthcare workers, mainly physicians, nurses, and auxiliary staff, reported post-traumatic stress symptoms during outbreaks, with symptoms persisting for up to 3 years in 10–40% of the cases. Depressive symptoms were reported in 27.5–50.7%, insomnia symptoms in 34–36.1%, and severe anxiety symptoms in 45% ( 4 ). A subgroup analysis revealed gender and occupational differences, with female health care practitioners and nurses exhibiting higher rates of affective symptoms compared to men and medical staff, respectively ( 5 ).

As a result, depressive symptoms (21%) and anxiety symptoms (19%) are higher during the COVID-19 pandemic compared to previous epidemiological data. About 16% of the subjects suffered from severe clinical insomnia during the lockdown. The pandemic and lockdown seemed to be particularly stressful for younger adults who were under 35 years old, women, people out of work, or those with low incomes ( 6 ). In the fight against the pandemic, China adopted measures to restrict population aggregation, such as the blockade of pandemic areas, individual patient isolation, and restrictions on the movement of people in non-pandemic areas. These measures effectively prevented the spread of the pandemic. At the same time, the use of health codes, grid-like community management, and the operational efficiency of infectious disease information networks have greatly improved. However, quarantine has also brought with it a number of problems, such as increasing psychological pressure on the population, affecting the daily lives of families, and hindering social and economic development ( 7 ). A large sample size study with wide coverage published in 2021 showed that young people quarantined at home in different provinces had different rates of anxiety and depression due to different severity of pandemic situations in different regions. The risk of anxiety and depression was statistically significantly higher in girls than in boys. The rate of anxiety and depression was affected by factors, such as gender, age, and area, as well as the existence of COVID-19 cases in the surrounding area ( 8 ).

Psychological Symptoms

The impact of the aforementioned isolation measures on mental health is only part of the impact of the COVID-19 on mental health. Psychological symptoms brought about by the pandemic have also been systematically sorted out by scholars. These studies show two clues. First, certain people have special psychological symptoms; second, psychological symptoms in different countries of the world are roughly the same. Several factors were associated with a higher risk of psychiatric symptoms or low psychological wellbeing, including female gender and poor self-related health ( 9 ). Relatively, severe symptoms of anxiety, depression, post-traumatic stress disorder, psychological distress, and stress were reported in the general population during the COVID-19 pandemic in China, Spain, Italy, Iran, the USA, Turkey, Nepal, and Denmark. Risk factors associated with measures of distress include female gender, younger age group, the presence of chronic or psychiatric illnesses, unemployment, student status, and frequent exposure to social media or news concerning COVID-19. The pandemic is associated with significant levels of psychological distress that, in many cases, will meet the threshold for clinical relevance. Mitigating the hazardous effects of COVID-19 on mental health is an international public health priority ( 1 ). Infectious disease pandemics often cause some people to act irrationally. The results of a survey based on psychological symptoms and irrational behaviors have drawn some conclusions. First, the vast majority of people remain in good physical and mental health, but some exhibit irrational behaviors. Second, women, elderly people, and those with confirmed cases showed more physical and mental symptoms and irrational behaviors. Finally, paradoxically, people with high education levels showed more mental symptoms, but fewer irrational behaviors ( 10 ).

Telemedicine

Just as the pandemic has enabled the rapid development of online education, the prospects of telemedicine are also favored by experts, observers, and investors. However, there are two restrictive aspects, namely, telemedicine equipment and telemedicine human resources. The application of 5G communication technology, telemedicine equipment, remote monitoring equipment, remote physical sign monitoring equipment, and medical artificial intelligence triage equipment all need to be urgently developed and improved. Jiangsu, a province in China, is a model province of the national project called “Internet + Medical and Health.” During the pandemic, the telemedicine by public hospitals in Jiangsu Province helped improve the efficiency of diagnosis and treatment, alleviating the pressure of offline diagnosis and treatment, and reducing the risk of cross-infection. Subsequently, medical staff were fully supportive of telemedicine. However, there was a shortage of medical staff in fever clinics, obstetrics and gynecology, pediatrics, and psychiatrists that provided telemedicine services, and they lacked corresponding incentive mechanisms ( 11 ). Effective mitigation strategies to improve mental health were developed by public health management experts. To control the rapid spread of COVID-19 and manage the crisis better, both developed and developing countries have been improving the efficiency of their health system by replacing a proportion of face-to-face clinical encounters with telemedicine solutions ( 12 ).

Social Media

There were rumors in various kinds of media during the COVID-19 pandemic. Although we can regard rumors as a disturbing error for psychological measurement, if they are not strictly controlled, their impact on people's mental health and behavior cannot be ignored. A study focusing on the spread of WeChat rumors has explored the psychological perception mechanism of audiences affected by rumor spreading in emergency situations. The study has significant results in the following terms: the form characteristics of the rumors in COVID-19, the ranking of susceptible age groups, the degree of dependence of the test subject on certain media and its psychological impact, and the follow-up behavior of the test subjects related to psychological variables ( 2 ). In 2021, another interesting study based on the data of TikTok videos released by three mainstream media in China showed that they inevitably caused some psychological trauma to the public. However, from the perspective of overall emotional orientation, short-format videos with positive reporting emotional tendencies had an advantage in attracting likes from TikTok users. Positive government responses to pandemic information were very important, and those responses could be recognized and praised by most social media users. Some of the TikTok videos, such as The Plasma of a Recovered Patient Cured 11 Other ICU Patients, The First COVID-19 Test Kit Passed Inspection, and A Frenchman Named Fred gave up Returning to Home to Join China's Anti-COVID-19 Battle, are extremely popular among social media users. Most social media users have been providing spiritual sustenance for people in the pandemic ( 13 ). When a public health crisis occurs, social media plays an important role in increasing public vigilance, helping the public identify rumors, and boosting public morale.

University Students and Loneliness

A study that assessed the adverse impact on the mental health of university students has drawn some conclusions. First, the severity of the outbreak has an indirect effect on negative emotions by affecting sleep quality. Second, a possible mitigation strategy to improve mental health includes ensuring suitable amounts of daily physical activity and deep sleep. Third, the pandemic has reduced people's aggressiveness, probably by making people realize the fragility and preciousness of life ( 14 ). Another research focused on social networks and mental health compared two cohorts of Swiss undergraduate students who were experiencing the crisis, and made an additional comparison with an earlier cohort who did not experience the pandemic. The researchers found that interaction and co-study networks had become sparser, and more students were studying alone. Stressors shifted from fear of missing out on social life to concern about health, family, friends, and their future ( 15 ). Young adults, women, people with lower education or lower income, the economically inactive, people living alone, and urban residents were at greater risk of being lonely during the pandemic. Being a student emerged as a higher than usual risk factor for loneliness during the lockdown ( 16 ). A study to explore the relationship between loneliness and stress among undergraduates in North America showed that the loneliness and stress among college students increased. On one hand, stress plays a key role in the deterioration of college students' mental health; on the other hand, reducing the loneliness of college students is expected to reduce the negative impact of stress on college students' mental health ( 17 ).

Research Trends

Due to the limited training sample of academic papers at present, it is difficult to predict the outcomes accurately. Though we cannot exactly predict the hot issues in the future, we can sort out some possible research trends in this field by analyzing existing research approaches. Psychological symptoms that affected people's mental health during the COVID-19 pandemic will be discovered further, especially those that probably continued to affect people's mental health even after the pandemic is controlled.

Studies on mild psychological symptoms, such as mild insomnia and anxiety, tend to decrease slowly, and in the case of severe problems caused by the pandemic, or severe psychological symptoms, such as clinical insomnia, depression, bipolar disorder, the corresponding in-depth research will continue. The impact of a global pandemic on the mental health of the global population must be profound and worthy of study. Due to the rapid development of COVID-19, many famous universities and research institutions have not had enough time to collect sufficient data and relevant research materials. The different effects on populations in different countries with different pandemic prevention policies are not yet fully displayed.

Regardless of how research on mental health develops, the COVID-19 pandemic has indeed brought us some new insights. As mentioned in many articles on mental health interventions for adolescents and college students, the mental health of specific populations and the development of telemedicine all deserve continued academic attention. Mental health intervention for adolescents and college students is a means to consider and prepare for the future. To ensure responsible and accountable behavior for future generations, we should all pay attention to the research and application of this method. Caring for specific groups of people, such as doctors, nurses, and other healthcare workers, and studying how to protect them in a global pandemic is a topic that global academia must study in the future, or we will lose protection the next time the virus sweeps the world. In addition, telemedicine is the trend in the future, and face-to-face diagnosis and treatment will undoubtedly increase the risk of cross-infection during the pandemic. Therefore, the development of telemedicine is an important way to avoid contact between the patients. The COVID-19 pandemic has accelerated the research and development of telemedicine.

Limitations

(1) Though we have selected three databases for analysis, there are still some databases that may be related to this field that are not covered in this study. (2) Since COVID-19-related research was started just 2 years ago, the results of the bibliometric analysis may vary after adding new data. (3) The citation frequency of articles is influenced by the time of publication, thus previously published articles should be cited more frequently than new ones. (4) Bibliometric data change over time, and different conclusions may be drawn over time. Therefore, this study should be updated in the future.

Conclusions

The most mentioned keywords, in addition to COVID-19 and mental health, can be roughly divided into three categories: keywords representing specific groups of people, keywords describing influences and symptoms, and keywords related to public health policies. The most mentioned issues were about medical staff, quarantine, psychological symptoms, telemedicine, social media, and loneliness. Mild psychological symptoms, such as insomnia, depression, and anxiety, tend to decrease slowly, while severe ones, such as severe clinical insomnia, depression, and bipolar disorder, are yet to be discovered. The importance of studies on the protection of youth medical staff and telemedicine studies will become even more significant in the future. While physical health is threatened by the pandemic, human mental health also suffers. Judging from the current situation of pandemic prevention and control, if severe prevention and control measures are taken, the impact of COVID-19 on the health of the social population is controllable; if a strategy of coexistence with the virus is adopted, as long as a new deadly mutation of COVID-19 does not emerge, the outcomes can be controllable. However, the impact of the pandemic on human mental health is not easy to predict. In addition to the abovementioned papers on mental health, the author also noted that some papers focused on neuromedicine pointed out that the virus might have some damage to the normal working mechanism of the human nervous system, but these studies are outside the scope of mental health research, at least for now. This study aims to summarize the observations, analysis, and research of scholars on mental health during the pandemic from 2020 to early 2022, with a view to provide more clues for future researchers. We hope that more researchers will build on our research to discover new research areas and new questions to help more countries, groups, and individuals affected by the COVID-19 pandemic.

Data Availability Statement

Author contributions.

YL was responsible for the concept and design, drafting this article, and bibliometric analysis. YL, LS, and XT were responsible for the revision and data collection. All authors contributed to this article and approved the submitted version.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's Note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Acknowledgments

The authors thank the study participants for their time and effort.