key: cord-0915265-7z1ilig2
authors: Lecouturier, Jan; Kelly, Michael P.; Graham, Fiona; Meyer, Carly; Tang, Mei Yee; Goffe, Louis; Bonell, Chris; Michie, Susan; Sniehotta, Falko F.
title: Public understanding of COVID-19 antibody testing and test results: A qualitative study conducted in the U.K. early in the pandemic
date: 2021-02-16
journal: Soc Sci Med
DOI: 10.1016/j.socscimed.2021.113778
sha: e435c254abf07c54e9573d6956cf6c96a0b4c872
doc_id: 915265
cord_uid: 7z1ilig2

BACKGROUND: During the COVID-19 pandemic, antibody testing was proposed by several countries as a surveillance tool to monitor the spread of the virus and potentially to ease restrictions. In the UK, antibody testing originally formed the third pillar of the UK Government’s COVID-19 testing programme and was thought to offer hope that those with a negative antibody test result could return to normal life. However, at that time scientists and the public had little understanding of the longevity of COVID-19 antibodies, and whether they provided immunity to reinfection or transmission of the virus. OBJECTIVE: This paper explores the UK public’s understanding of COVID-19 testing, perceived test accuracy, the meaning of a positive test result, willingness to adhere to restrictive measures in response to an antibody test result and how they expect other people to respond. METHODS: On-line synchronous focus groups were conducted in April/May 2020 during the first wave of the pandemic and the most stringent period of the COVID-19 restrictive measures. Data were analysed thematically. RESULTS: There was confusion in responses as to whether those with a positive or negative test should return to work and which restrictive measures would apply to them or their household members. Participants raised concerns about the wider public response to positive antibody test results and the adverse behavioural effects. There were worries that antibody tests could create a divided society particularly if those with a positive test result were given greater freedoms or chose to disregard the restrictive measures. CONCLUSION: Should these tests be offered more widely, information should be developed in consultation with the public to ensure clarity and address uncertainty about test results and subsequent behaviours.

At the end of December 2019, the World Health Organization (WHO) was alerted to a cluster of unusual pneumonia cases in Wuhan, Hubei Province in China. In early January 2020 this was identified as a novel SARS-CoV-2, subsequently known as COVID-19. Within a short space of time the virus had spread across the world and the WHO declared COVID-19 to be a pandemic (WHO 27 April).

In the first phase of the COVID-19 pandemic, antibody testing was proposed by several countries as a means of gathering data on the spread of the virus and/or, to inform strategies to ease restrictive measures, and test and trace programmes (Baraniuk 2020) particularly to identify the source of clusters of infections (Normile 2020) . In the UK, the Prime Minister said antibody testing was a potential 'game-changer' (BBC 2020) . The presence of antibodies indicates an individual's immune system has responded to the virus. Antibody tests differ from antigen tests that determine whether someone is currently infected. In the case of this virus, at the time this study was conducted in April/May 2020, scientists and the public had little understanding of the longevity of antibodies, and whether they provided immunity to reinfection or transmission. The current (January 2021) knowledge is that antibodies are maintained for at least eight months (Dan 2021) and for at least three months in those who had mild COVID-19 symptoms (Rodda 2020) . There is evidence that people can be re-infected (Parry 2020 , Hall 2021 and work continues to gain a greater understanding of antibodies and immunity. Interim findings from a large cohort study of antibody-positive and antibody-negative UK health workers found antibodies, produced in response to a previous infection, provided 83% protection against reinfection for five months (Hall 2021) .

Although the findings have been welcomed, the sample consists primarily of women under the age of 60 and it is too early to determine immunity against the new variants of the virus (Ledford 2021 ).

The cohort study will follow participants for 12 months to provide further data on how long immunity lasts and the degree to which someone with immunity can transmit the virus to others (Hall 2021 ).

J o u r n a l P r e -p r o o f 3 The aim of our study, commissioned by the UK Department of Health and Social Care, was to explore using qualitative methods, public understanding of antibody testing more broadly beyond terminology.

The study was conducted in the early months of what became the first period of lockdown in the UK. Data were collected between 29 April and 8 May 2020, when very stringent control measures to prevent social contacts were in force. The day before the first focus group, the national news had reported that the total number of COVID-19 deaths in the UK was just under 22,000, with 586 deaths (ITN News 28 April 2020). There had been an increase of 3,996 people who tested positive since the previous day (GOV.UK 2020). This was the period just before one of the UK government's first change of message. The alteration was from 'Stay at home, Save lives, Protect the NHS' to 'Stay alert, control the virus, save lives'. At the time of the investigation, almost all schools were closed, and only the children of key workers were allowed to attend the few that remained open. Wherever possible the public were asked to work from home. The measures were, with the exception of key workers: to leave home only to shop for basic necessities, for a medical need or to help a vulnerable person, for one form of exercise each day; and, to keep a distance of two metres from those not from the same household. Shops selling non-essential goods, restaurants and bars were closed. Numbers of mourners at funerals were restricted and social gatherings were banned.

Those deemed clinically extremely vulnerable received a communication from the National Health Service to ask them to shield at home. This entailed avoiding all face-to-face contact and practicing social distancing with others in their household. The UK Government was working with partners to develop an antibody test with 98% accuracy for true positive and true negative cases.

The study involved members of the public from England, Scotland, and Wales. J o u r n a l P r e -p r o o f

A purposive sampling strategy was used to include participants from a range of socioeconomic and ethnic groups and of regions. Members were recruited from a market research company's panel database. The company emailed panel members inviting those interested to complete a screening questionnaire. From those screened eligible, 60 members of the public were selected to ensure a mix of ages, homeownership, household type, ethnic group, employment status, socio-economic status, and region. Twelve were invited to each group to ensure a minimum of eight participants. Consent to participate and to use quotations from the discussions in reports and publications was obtained by the company.

A qualitative design was chosen due to the exploratory nature of the research. Focus groups enabled the team to consider participants' shared, or differences in, understanding as well as disagreements. In focus groups, the discussion is between participants and insights are gained from this interaction (Kitzinger, 1994) . A further rationale and benefit of this method was the speed with which we were able to conduct the fieldwork. Not only was the landscape of the pandemic changing rapidly, but also the research needed to contribute to policy discussions at the time. Due to the COVID-19 restrictions on social contact, online focus groups on Zoom were used (Archibald 2019) .

The format of data generated from online and in-person focus groups may differ, but content generated by both is notably similar (Woodyatt 2016) . The use of the panel database enabled heterogeneous groups and the online format the inclusion of participants from more remote UK regions. Participants were not known to each other or to the researchers before the session. focus groups' findings as they progressed. A member of the research team's Patient and Public Involvement Strategy Group commented on the topic guide (Table 1) . All focus groups were facilitated by a lead moderator (JL) and a second moderator. Towards the end of each session the latter were asked if there were any points they would like to clarify or explore, to pick up any issues the lead moderator may have overlooked. Extraction of themes and concepts was conducted initially by the moderators and reported to a steering committee and wider team to inform the areas of exploration in the subsequent focus groups. Thematic saturation was deemed to have been met when new groups contributed no additional information or insights on the topics of interest.

[ Table 1 ]

To gain insight into the public's then understanding of COVID-19 antibody testing, the sessions began with an open question to generate the group discussion. The moderator intervened only to introduce a new topic or if the discussion was straying into other non-relevant areas. Before the groups discussed the meaning of a positive test, participants were informed about the then scientific consensus. This was that a positive test meant a lower risk of reinfection and transmission of the virus. Test accuracy was explored in the groups based on the UK Medicines and Healthcare Products Regulatory Agency (MHRA) guidance on antibody testing for patients, the public and professionals (GOV.UK 2020). In the MHRA's Target Product Profile, the minimal requirements are that antibody self-tests have 98% clinical sensitivity (minimising false negatives) and 98% clinical specificity (minimising false positives) (GOV.UK 2020). For the first group 98% then 100% accuracy were discussed and for the second group this was reversed (100% then 98%) to determine whether the statement order had any impact. 6 themes directly from the data. Other team members read through the transcripts independently to extract themes and concepts. These were compared with the rapid extraction conducted by the focus group moderators and with the thematic framework.

[ Table 2] The exploration was not explicitly theoretically driven and we were not seeking to test a particular theory. We were instead interested to see what ideas the focus groups generated. PMT (Rogers 1983 ) served as a framework for the subsequent interpretation of the data because it fitted well with the data that had emerged. PMT identifies two parallel processes, threat appraisal, and coping appraisal. These determine an individual's intention to adopt, or not adopt, a protective behaviour. Threat appraisal is affected by how serious an individual believes the threat is to them and how vulnerable they are should the threat be realised, and the benefits of implementing a behaviour. Coping appraisal is determined by how effective an individual believes a behaviour will be in averting threat. The application of this framework helped to illuminate the participant responses to the uncertainties surrounding antibody testing.

The study received ethical approval from XXX on 16 April 2020.

The overarching themes identified from the data were: the impact of scientific uncertainties about antibody testing; the pros and cons of antibody testing; and, response to and views of a positive and negative antibody test result. The sub-themes are discussed below within each theme. At the time of data collection, it was unknown whether someone who tested positive for antibodies could be re-infected or transmit the virus to others. In three of the five groups, these issues were raised spontaneously by participants early in the discussion, demonstrating an awareness of these problems which at the time had received some media coverage. A positive test was presented to the groups, as a person being at a lower risk of re-infection and transmission.

Uncertainty was a recurring theme. The absence of definitive scientific knowledge about the virus and evidence about the meaning of a positive test in the scientific community, were raised as concerns by a number of participants. One respondent pointed out that the test could be 'giving me a false sense of security that I'm not going to infect anybody else, when actually I could still be infectious' (Jake -Group 1). Some questioned the benefit of testing considering the uncertainties for the individual. 

Although the majority said antibody testing would be beneficial, there were a few dissenting voices.

The feasibility of testing on a large scale and frequency of testing were questioned. It was considered by some to be a waste of resources that could be of greater use elsewhere, for example in the development of a vaccine.

Potential Potential Potential societal societal societal societal divisions due to antibody testing divisions due to antibody testing divisions due to antibody testing divisions due to antibody testing Apart from the uncertainties for those with a positive test, another disadvantage of antibody testing was considered by some to be the potential to create divisions in society at large. This was between both the tested and untested, and between those with a positive and negative test result.

Most of the group discussion was related to the potential to impose distancing on individuals based 

If those who tested negative were expected to continue to follow restrictive measures they would most likely consider this to be unfair, and it was suggested there may be a 'bit of a clash' (Nigel Group 4). One participant said they would feel 'cross' if others who had had the virus were given greater freedom, when they themselves had taken measures to avoid being infected (Jake Group 1). Another raised concerns about the psychological impact on J o u r n a l P r e -p r o o f those testing negative. A few said the situation would have to be carefully managed to ensure that those whose freedom continued to be restricted were not treated unfairly. 

Although the majority said they would welcome a positive test result, this was based on the assumption that the infection had short-term consequences. It did raise concerns for a few participants that they may have infected family members and anyone else with whom they may have come into contact, and the timescales of testing. 

The third reason was to return to the workplace. One participant who wanted to return to work was staying at home as she had a cough and -confusing the antibody with the antigen testsaid a positive test would help to distinguish between a normal cold and the COVID virus. She argued that a test would enable people to remain in the workplace. Another who was unable to work from home claimed they had experienced financial difficulties and had had no support from elsewhere.

They said they would be pleased with a positive test result and would return to work but also raised the issue of uncertainty of reinfection and transmission. 

The majority of the participants had been able to work from home at least in the short term.

With this in mind, most were not comfortable to return to the workplace whatever their test result.

The view expressed in the first quotation below was representative of most participants. 

One participant commented that it would be proof that the measures they had taken were successful. Another said it would be a disappointment as he wanted to contract the virus and 'get it out of the way (rather) than worry about it for the next however, 9 to 12 months'.

In terms of changes to their behaviour based on a negative test result, one participant reported they would venture outside of their home more, knowing they were not a threat to others.

Another participant mulled over the idea of relaxing their adherence to the restrictive measures, knowing they were negative, but raised concerns about the risk of becoming infected and passing the virus to family members.

would tell people I passed at 98%, then they could make their own decisions up.'

The remainder said they would continue to adhere to the restrictive measures. Some added they would be more careful, by going outdoors less and finding alternative means to shop for J o u r n a l P r e -p r o o f essentials themselves. In contrast to the risk perception of a positive antibody test -being less of a risk to others -with a negative test most considered the risk was to themselves. 

The view that other people would return to 'old ways' based on the antibody test appeared to be driven by witnessing others, albeit a minority, not adhering to the restrictive measures. One person commented that when given advice, 'some people, they'll only hear out of that what they want to hear and that's a problem' (Amy Group 5) and may ignore the uncertainties about a positive antibody test. Non-adherence to the measures was a key concern for most. Concerning a population response to a positive test, one person said, 'I would feel even more nervous than I do now, because of lots of lunatics not complying' (Paul Group 1). 

If the measures were relaxed for those with a positive antibody test, the issue was raised as to whether those tested negative may try to become infected. Views on this were mixed: some said it was a possibility and others that they could not believe anyone would take such a risk.

Understanding of t Understanding of t Understanding of t Understanding of the meaning of a negative or positive antibody test he meaning of a negative or positive antibody test he meaning of a negative or positive antibody test he meaning of a negative or positive antibody test

One potential perceived benefit of antibody testing mentioned by participants was the relaxation of restrictive measures. During the discussions, it transpired that there were different understandings as to whether those with a negative or a positive result would return to their workplace. Most appeared to assume that it would be those who test positive who would return to workplaces but there were alternative views.

'For the ones that are at home, self-isolating, if they've not -well, say that they're self-isolating because they've got symptoms and they were negative, then yes, they'd be probably more inclined to come to work. Because they don't feel like they've got something they could pass onto their team or the customers.' Joyce -

Discussion about teachers being part of an antibody testing programme highlighted perceptions of risks to teachers and their families rather than to the pupils. If teachers who tested negative returned, one participant pointed out there would be a need for repeat testing. The second quotation illustrates this participant's lack of recognition of the uncertainties about the risk of reinfection and transmission with a positive antibody test. 

Although not frequently observed in the group discussions, there were some comments that suggested confusion about positive or negative antibody test results in terms of which is the better of the two.

'Is that if you tested positive or negative?'

This qualitative study highlights the confusion amongst some members of the UK public in the early stages of the pandemic about the different tests for COVID-19, worries over the uncertainties in the scientific community regarding reinfection and transmission for those with a positive test, the meaning of positive and negative test results for future behaviour with regard to the restrictive measures and the potential inequities these tests could create.

The findings of this study are congruent with Protection Motivation Theory (PMT), which states that protection motivation, or the intention to adopt protective behaviours is a function of a threat appraisal, considering severity and vulnerability of a potential health threat, a coping appraisal of the efficacy and costs of potential responses, and the self-efficacy to execute them (Rogers 1983) . From an individual perspective, positive antibody tests were seen to affect threat appraisal through lowered perceptions of susceptibility. Participants highlighted that unknowns about antibody testing affected their ability to evaluate the nature of the threats about infection, reinfection and transmission with and without antibodies. Whilst they considered others to become less likely to adhere to protective measures after a positive antibody test, many did not expect a positive antibody test to affect their own behaviour, arguably due to the lack of certainty. This was also due to their coping appraisal. Participants held strong beliefs, at the time of the fieldwork, that the restrictive measures would protect participants and their families and there was a high level of reported self-efficacy and adherence to those measures that were in operation at that time.

From a collective perspective in the Spring of 2020, antibody testing was discussed in the context of its effectiveness as a potential strategy to manage the pandemic by excluding those with a positive antibody test from restrictive protective measures. Participants were unconvinced that this would be an efficient response due to uncertainties about test accuracy and immunity effects and fear of being infected or infecting others. This was especially the case as a number of participants were in the higher risk group (had co-morbid conditions or were key workers). Social distancing and personal protective behaviours were viewed as the more efficient response and one that participants had confidence in, in spite of its cost to personal, social and economic life.

The focus groups highlighted the significance of uncertainties about antibody testing as a new threat. Uncertainties about the test had to be evaluated in addition to threats from the virus.

There is a risk that the overall levels of uncertainty about the meaning and implications of a positive or negative antibody test will produce raised levels of anxiety without adaptive behaviour (Lazarus 1980) . In consideration of the wider public response to a positive test, the majority view in this study was that it would lead to a large proportion of the population ignoring the restrictive measures. A widespread reduction in adherence to the measures could impact on social norms and lead to those with a negative antibody test copying behaviours of those with a positive antibody test assuming their immunity. This was considered a danger to everyone and impacted on their threat appraisal.

Where the nature of the threat is uncertain, as here, it is not surprising that participants varied in the responses that they said themselves and others would make. It is not clear how stable these views were and when the fieldwork was conducted, neither we nor the respondents had any sense of the restrictions continuing beyond the end of 2020.

Other key findings were that with a negative test, some participants considered themselves to be at greater risk, and they would be more careful and go out less. there were a need to reduce staff numbers. These concerns have been raised by others (Kofler 2020;  Nuffield 2020) who also argue that more affluent people will be able to purchase an antibody test, further discriminating against poor, marginalised and vulnerable groups (Kofler 2020) . The potential implication is a situation where the wealthy enjoy greater freedoms, which could be beneficial from both a psychological and economic perspective. Sociologists have coined the term biocitizenship to refer to differences in citizenship rights rooted in biological states (Rose 2005) . There are concerns that immunity could be one such biological state used to determine personal freedoms and concerns about the inequalities that could then arise. There are historical parallels with immunity to yellow fever being associated with racialized injustice in 19th century USA ).

When we embarked upon this research, COVID-19 antibody testing was a hotly debated topic and was thought to be a viable policy option. However, it has proven to be a more difficult strategy to bring to bear on the pandemic than was originally assumed. The reasons include uncertainties about immunity and the lifespan of antibodies, and the technical and logistical aspects of testing. In addition to these issues our study has shown that in terms of public attitudes and beliefs, antibody testing as part of a COVID-19 strategy is very complex and not a simple gamechanger.

At the time of finalising this article, in the period since the data were gathered, the UK Government has not followed through with national policies about public antibody testing. There has been a further wave of infection starting towards the end of 2020, new mutations of the virus have appeared and death rates per day are higher in January 2021 than at the time the fieldwork was originally conducted. The UK is once again in a form of almost total lockdown and the basic message from government is to stay home and as far as possible keep away from others. In the UK a rollout of vaccines has begun, and it may be that the possibility of immunity through this route, will have crystalized people's thinking about antibody testing, or rendered the whole approach redundant. However, based on current early research findings (Hay 2021) it has been reported in journals and the media that natural immunity from infection could offer more protection than some of the vaccines (Ledford 2021 , Sample 2021 . With antibody tests readily available to purchase online and through local pharmacies, members of the public who are unsure about being vaccinated -or do not want to wait until they are offered one -may resort to having these tests before immunity is fully understood. The concerns raised by those in the focus groups of widespread reduction in adherence to the measures based on a positive test could be realised.

But should antibody testing be adopted we would argue an information campaign, designed in collaboration with the members of the public, would be required. Test accuracy would need to be carefully framed with guidance on protective behaviours to reassure those who are anxious about less than 100% accuracy. The uncertainties would need to be fully explained and guidance on protective behaviours for both positive and negative test results provided. Format and modes of delivery of this campaign would also need to be explored in collaboration with members of the public.

There are several implications for policies on antibody testing. If these tests should form part of a COVID-19 policy pathway there are four key points to consider. First, there is a need to address the uncertainties about the meaning of a positive antibody test result and manage expectations about the perceived individual benefits of testing. Second, there is a danger that those with a positive test result will assume they are safe and disregard protective measures which could lead to a general undermining of population adherence to restrictions. Without reducing uncertainty about immunity, it is questionable whether messaging will affect this potential public response. Third, there is also a risk of elevating general levels of anxiety resulting in a reluctance to follow less stringent government restrictive measures, and a potentially detrimental impact on mental health.

Finally, there is the danger of exacerbating social divisions through these tests, particularly between those who could or could not afford to purchase an antibody test, and this must be avoided or carefully managed. Inter alia these points also perhaps speak to framing any campaigns about vaccination.

This was a qualitative study and therefore the views of those who participated may not be representative of the wider UK population. The study was conducted at a particular moment in the pandemic. The death toll is now very much higher than was probably anticipated in the Spring of 2020 when the fieldwork was done. Vaccines are now available, but new variants of the virus have appeared and they seem to be much more transmissible than during the initial phases. It is difficult to judge without further empirical investigation how much attitudes may have changed or remained stable. It was also not possible to explore whether participants expressed views were consistent with their behaviour. The need to conduct online focus groups enabled the inclusion of individuals from different regions across the UK, something that would have been difficult logistically with faceto-face focus groups. Group participants could compare and discuss regional differences particularly concerning adherence to the restrictive measures. One limitation of this mode of data collection is that those without internet access were excluded.

The focus groups provided a window on the discussions between members of the public, and through this, valuable insights into their understanding about antibody testing at a specific point in time. Clearly, this method does not allow for an in-depth exploration of the views of individuals, but this study had no aim to do so. We found a higher level of self-reported adherence with the J o u r n a l P r e -p r o o f restrictive measures than in contemporary quantitative studies (Smith 2020) . It may be that our study attracted those who were more anxious about being infected, and hence were more compliant with the restrictive measures. Another explanation for the high level of reported adherence could be that the online 'face-to-face' focus group format introduced social desirability bias. New research has been published since our fieldwork, specifically about the lifespan of antibodies, and it seems likely that more will be learned about immunity in due course.

There is a wealth of information and misinformation that the public can access about the pandemic. Some aspects are technical and difficult for non-specialists to understand, and sometimes the are contradictory. Nonetheless, if in the future antibody tests can offer the promise, or be part of a return to usual activities, any information developed to assist their implementation must clearly J o u r n a l P r e -p r o o f J o u r n a l P r e -p r o o f Table 2 -Steps in data analysis.

Step 1: Familiarisation with data -reading, re-reading and listening to recordings of interviews or focus groups.

Step 2: Generate initial codes -systematically record features of the data that are interesting across the data.

Step 3: Identify themes -coded extracts are sorted into overarching themes. Subthemes are developed where appropriate.

Step 4: Review of themes -at this stage, themes are combined, refined, redefined or separated. From this map or framework is devised.

Step 5: Defining and naming themes -another stage of refinement of the themes and sub-themes and the addition of concise working definitions of each theme.

J o u r n a l P r e -p r o o f Note. Key to socio-economic groups: A-High managerial, administrative or professional ; B-Intermediate managerial, administrative or professional; C1-Supervisory, clerical and junior managerial, administrative or professional; C2-Skilled manual workers; D-Semi and unskilled manual workers; E-State pensioners, casual or lowest grade workers, unemployed with state benefits only. Source: NRS 2008 J o u r n a l P r e -p r o o f

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We thank the members of the public who participated in the on-line focus groups.The authors acknowledge the support of Dave Green and Irene Soulsby from the Patient and Public Involvement Strategy Group (NIHR Policy Research Unit in Behavioural Science) for their review of the focus group topic guides and early manuscript.J o u r n a l P r e -p r o o f