Tell Us! A survey of public opinion on how to deal with COVID-19 risks and subsequent harm

Abstract

SETTING:

The COVID-19 pandemic has impacted all of us in many areas of life due to mitigation measures, delays in medical care, or the disease itself. When it concerns issues as complex and universal as COVID-19, the public should also have a say in how to deal with managing its impact.

DESIGN:

In a widely distributed online questionnaire, members of the Austrian public were invited to contribute experiences, ideas and opinions on the level of risk they were willing to accept regarding COVID-19. The huge variety of responses were categorised by social scientists into groups used in a workshop to draw up recommendations for responding to future challenges to the healthcare system from an interdisciplinary point of view.

RESULTS:

The results of the survey indicated that while members of the public are primarily afraid of illnesses caused by COVID-19, they also fear the psychological burden and effects at the societal level.

CONCLUSION:

Our study has shown that there is a significant public desire to have a say in issues which directly impact citizens.

COVID-19 has occupied our minds and shaped our daily lives for almost 2 years since it became a global pandemic. According to Dr Anthony Fauci, a leading member of the US White House COVID-19 Response Team, COVID-19 is worse than any pandemic in the last century (5.8 million deaths and 404 million detected cases worldwide as of 10 February 2022).¹ It has impacted all of us in many areas of life due to mitigation measures, delays in medical care, or the disease itself. While certain restrictions reduce the number of infections and thus lower potential spread, the risk of contracting SARS-CoV-2 remains and cannot be completely eradicated.² The key question is thus the level of remaining risk that society is willing to accept. Risk is mathematically defined as the product of the probability of the occurrence of an event and the potential harm it poses. From the perspective of psychology, management theory and science theory, risk is defined as a decision under uncertainty.³ The risk of infection can be reduced by means of various restrictions and measures.^4,5 However, these rules and restrictions may create other societal challenges. After the global state of shock which accompanied the first wave, the discussion has become highly polarised, as each of us perceive the effects, dangers as well as restrictions differently, and with different degrees of intensity. The individual’s perception of the disease is influenced by variations in living conditions (income, family, general health status, age, employment), general risk awareness, and trust in politics and science.⁶

As the pandemic affects every facet of our lives, everyone should be given the opportunity to participate in shared discussions. In line with Joseph M Bessette’s concept of deliberative democracy and the theories of citizen science, we have seen how public discourse, communication and the involvement of citizens and their views in the decision-making process around COVID-19 have been strengthened.^7,8 The importance of involving various fields of expertise in the development of solutions, diagnostic processes, treatment and research (e.g., through open innovation or patient involvement in clinical research) has accelerated, particularly in the field of healthcare and medicine.⁹

Seen against this background, our aim was to consult interested citizens, giving them the chance to contribute their stories and experiences by means of an online survey open to the public, and subsequently hold a workshop with experts and citizens based on these answers in order to generate recommendations for decision makers.

METHODS

We first invited the general public in Austria to complete an online questionnaire allowing them to share their thoughts on the harm COVID-19 might cause to themselves or their families, their fears and how they were dealing with COVID-19 transmission risks in their everyday life. In a second step, we hosted a workshop with 15 experts drawn from different disciplines, and one citizen, to formulate recommendations for decision makers on the three major topics of concern identified in the survey. Three more citizens registered for the workshop but unfortunately had to cancel their attendance at the last minute.

This study was exempt from ethics approval requirement by the Chair of the Ethical Review Board for Viennese Hospitals in the Vinzenz Holding, since it represents an online survey with voluntary participation and all data were anonymised. This exemption is in line with Austrian law and with the principles of the Helsinki Declaration and European Union’s General Data Protection Regulation (GDPR). Before starting the survey, we assured participants that their answers would be analysed anonymously and that all data protection regulations would be complied with. The experts and the citizen participating in the workshop were informed about the setting beforehand and gave their verbal consent to be named as idea providers for the recommendations.

From 22 March to 30 April 2021, everyone in Austria was able to submit their responses to the following two open-ended questions via an online survey: 1) What harm to you, your family and friends caused by COVID-19 do you fear the most? 2) How do you deal with the risk of possible infection with COVID-19 in your everyday life?

The online questionnaire was designed within an interdisciplinary team of physicians, psychologists and social scientists, and also included feedback from non-researchers. The two open-ended questions were supplemented with basic demographic questions (age, sex,…). In addition, respondents were asked to indicate their level of agreement with a series of statements about the limitations caused by COVID-19 in different areas of life using a 5-point Likert scale ranging from “I completely agree” to “I completely disagree”.

In order to receive a wide range of opinions and perceptions from people affected by the pandemic, the link to the online survey was sent to a variety of stakeholders, including pensioners’ associations, bodies representing pupils and students, migrant cultural associations, hoteliers and travel agencies. We also issued an invitation to participate in the survey via our social media channels (Facebook, Instagram, Twitter, LinkedIn). An article in a newspaper and a radio feature – both media-ranked in the top 10 for reach within Austria – increased awareness of the project.

The two open-ended questions were analysed by five social scientists using thematic analysis.¹⁰ First, they familiarised themselves with the data and acquired a general overview; they then established categories to which they assigned the individual answers. When necessary, new categories were created during the process. Finally, three main topics were identified and then summed up in a report, which served as the basis for the workshop discussion.

The workshop took place online at the end of May 2021, and involved a group of 15 experts drawn from a variety of disciplines (e.g., medicine, psychology, social work, law, nursing, ethics, statistics and history), and one citizen. The workshop participants were divided into three smaller groups, each moderated by colleagues from the Open Innovation in Science Center at the Ludwig Boltzmann Gesellschaft, Vienna, Austria (an Austrian network of specialised extra-university research institutes). During brainstorming sessions, all the participants were encouraged to contribute their views and consider the lessons learnt. These ideas were then discussed within the group as a whole in order to agree on clear recommendations for action that all the participants could support. The final list of recommendations was subsequently communicated to political decision-makers.

RESULTS

From 22 March to 30 April 2021, 526 individuals living in Austria responded to the questionnaire. The majority of the study participants were female (344/526, 65%) with a tertiary level of education (321/526, 61%). The age range of the participants was broad (16–80 years, mean: 45 years, standard deviation: 15 years) and the views of people who participated in the survey reflected the variety of self-defined roles – from students to parents and grandparents, to different professional groups, pensioners and people who had become unemployed as a result of COVID-19. Overall, well-educated individuals were overrepresented in our study sample. Furthermore, the sample was predominantly female, which is in line with current research arguing that women are more willing to participate in online surveys.¹¹

The questionnaire was distributed shortly before the peak of the third wave in Austria, and amidst the survey period on 1 April 2021, the government imposed varying degrees of restrictions in most parts of the country with schools, shops, restaurants and cultural institutions closed. Testing for SARS-CoV-2 was improved during this period with complimentary rapid antigen tests for use at home, at pharmacies and at other facilities. In the Austrian capital, Vienna, free SARS-CoV-2 polymerase chain reaction tests were offered starting from the end of March. Vaccination was only possible since the end of December 2020, and there were few vaccines available. Therefore, at the beginning of the survey, only 7.7% of the population were partially vaccinated (3.9% fully vaccinated). By 30 April 2021, 16.4% had received at least one injection and 9.7% had been fully vaccinated.

When asked about the harm they feared from COVID-19, respondents listed a variety of topics of concern, which were then grouped into categories and sub-groups. The results of the thematic analysis are shown in the Figure, where the given percentage in each bubble indicates how often the particular topic of concern was mentioned.

FIGURE.

Topics of concern derived from the responses given by the participants.

Serious damage to health and life

The fear of serious damage to health during or after an infection was mentioned by approximately half of all participants. Every tenth person was afraid of suffering from “severe illness”, and about the same number of responses mentioned the fear of a stay in an intensive care unit (ICU). Around one third of the responses referred to possible after-effects or consequences of a COVID-19 infection. Long COVID and long-term/consequential damage were mentioned particularly frequently. Participants were especially concerned about the uncertainty regarding the type and treatment of the after-effects and the possible need for long-term therapy. Slightly more than a quarter of the evaluated responses referred to death as a potential threat due to a COVID-19 infection. Responses indicated that the participants were concerned about their own well-being, but even more so about that of their loved ones.

Psychological stress

One of the topics most frequently mentioned – by almost a third of the participants – can be summarised as psychological stress, triggered by uncertainty or fear of COVID-19 or by the lockdowns and preventative measures. While the majority of respondents used “psychological damage” and “psychological burden” to describe this, many examples were also elaborated, and these were then divided into sub-groups. Loneliness and (social) isolation were listed as major psychological burdens for many – both for younger and older participants. A considerable proportion of respondents also worried about the impact of the current situation on “social changes”. The fear of emotional distancing, aggression, alienation and the long-term loss of contacts ran deep for many. Participants were particularly concerned about children and young people who might suffer from long-term developmental impairments. It appears that many relationships became strained and broke down over the last months – triggered by existential worries and constant proximity resulting from restrictive curfew rules.

A smaller range of answers touched on specific symptoms and clinical pictures, primarily depression, anxiety, burn-out syndrome, sleeping disorders, compulsive behaviours and panic attacks. Some participants also worried about irrational fear and paranoia. Worsening addictions, such as increased alcohol consumption, were mentioned by the respondents, as well as an increasing risk of suicide.

Multiple responses noted the effects on and potential harm to children and adolescents, especially fears of developmental problems. Young people would be deprived of “valuable and carefree years of life” that they should be spending “dancing and going out”, as well as “future opportunities”.

Healthcare system, vaccines and fear of infection

Around 10% of the respondents mentioned other diseases and the healthcare system as a whole as important considerations that should not be overlooked. The risk of overburdening the health-care system, and thus the fear of not receiving adequate care for other acute illnesses, was also mentioned. The fear of insufficient bed capacity and the lack of nursing staff and doctors – all overworked since the beginning of the pandemic – were identified. Less often, but occasionally, participants voiced their fear of vaccination, and potential vaccine reactions and vaccine damage (it should be noted that this survey was conducted before universal vaccination of the entire population was possible). The responses relating to infection were raised both by those afraid of infection, as well as those expressing little to no fear. Those who indicated little to no fear of infection were also unafraid of a fatal outcome of a potential disease.

Economic and sociopolitical impact

For almost a third of the participants, the risks or dangers related to the economy and financial matters were very important. The most frequently mentioned worries were unemployment or the fear of losing their jobs. Some people were on part-time work and were afraid of worsening professional conditions and other unfavourable career developments. Several participants were anxious about the impact of COVID-19 on society. They had experienced social divisions which had also spread to family, friends and work colleagues. The risks of increasing social injustice and decreasing social solidarity were also mentioned.

Education

Risks that directly impact education were mentioned by a smaller group of people. Citizens primarily feared deficits caused by the current school situation and the lack of educational opportunities, i.e., school closures, the inadequacy of some distance learning, as well as the burden of homeschooling and working from home.

Other topics mentioned

Although sports and culture were secondary issues for most respondents, these were nevertheless brought up. When asked how participants dealt with the risk of contracting COVID-19, the responses mainly focused on contact reduction, testing, wearing a mask, maintaining physical distance and following guidelines, as well as general hygiene measures and vaccinations.

Workshop

In the workshop held at the end of May 2021, 15 experts and one citizen discussed the results of the survey and drew up recommendations for political decision-makers with respect to three major issues that were identified during thematic analysis. These were 1) severe consequential damage (mental and physical); 2) social division; and 3) empowerment and citizen commitment. While the first topic was taken directly from a defined cluster of the thematic analysis, the idea for the second workshop came from the contents in the clusters “Economic and sociopolitical impact”, in which respondents mentioned the divisions threatening Austrian society. Following the idea of the project itself, the third workshop dealt with means to engage citizens in such an overarching issue. The recommendations for action and lessons learnt were subsequently forwarded to political decision-makers and made available to the general public. The main take-away for future crises was the need to focus on clear, evidence-based and transparent communication, and that effort is needed to reach out to different population groups.

CONCLUSION

The multidimensional nature of the issues the COVID-19 pandemic faced by the public was clearly shown in the results of our survey and workshop. The multidisciplinary background of the experts served to broaden the perspectives on the individual topics of concern and highlighted aspects that had not been publicly voiced to date. Opening questionnaires for all interested citizens regardless of representativity appears to be a good opportunity for the public to make their voice heard, especially as it provides a low-threshold opportunity for citizens to open up anonymously about issues of concern. The issue of risks and measures relating to COVID-19 in particular has shown that there is a significant public desire to have a say in issues which directly impact citizens. We deliberately opened our survey to everyone interested in participating in the discussion, and ensured that the invitation was issued to a broad audience. Although the results are not statistically representative of the Austrian population, they do provide an explorative overview of the opinions of those willing to share their ideas and experiences on this issue. Although many citizens were happy to comment online and anonymously, only four citizens registered for the workshop and eventually one of them attended. This must be considered in future projects when public opinion is sought.