Covid-19 Post-Shielding Research: October 2023

4. Attitudes and Behaviours Post Highest Risk List

This chapter focuses on the reported attitudes and behaviours of people in Scotland since the end of the HRL. Throughout, comparisons are made between the population as a whole, those with any shielding experience and those who reported being on the HRL at the end.

4.1 Ending the Highest Risk List

In May 2022 the Chief Medical Officer wrote to all of those on the Highest Risk List (otherwise known as the shielding list) informing them that the highest risk list was coming to an end.

At this time, two versions of the letter were issued: a general letter, informing those on the highest risk list that they were no longer deemed higher risk and a higher risk group letter informing some that they may still be at higher risk and advice on how to manage their Covid-19 risk.

Around two-fifths (37%) of those who reported being on the list when it ended recalled being informed, they were still at a higher risk of contracting Covid-19 (Figure 4.1). Less than a third (28%) received the general letter while a further third (35%) could not recall. Findings on this question may be linked to the length of time between the list ending and the survey being carried out meaning that many respondents could not recall which letter they received.

Base: n=195, HRL only

Around half (49%) of those on the HRL when it ended felt either completely or somewhat reassured when they received their letter. Only 12% of those people on the HRL were not at all reassured when they received the letter confirming the end of the HRL (see figure 4.2).

Base: n=194, those on Highest Risk List at the end

Interview participants had mixed feelings about the ending of the list. Some were uncomfortable with the decision to end it, expressing concerns about the relaxation of restrictions and the potential risks. However, it was also noted by some that the lifting of restrictions signalled a sense of progress and a step towards returning to normal life:

‘No [I wasn’t worried about it ending] I was just glad to see that there was some sort of progress, and it was kind of getting, it was kind of dying down a bit.’

Some participants relayed that their concerns about the list ending were mediated by the fact that they still seemed to be a priority for vaccinations:

‘No, [I didn’t have any concerns about the ending of the HRL in May 2022], not really, because the formal list might have ended, but I still seem to be on a priority list for immunisations. I don’t know if that’s just age or the fact that I was, uh, immune compromised due to the surgery but I seem to get injections for everything up at the community hospital.’

As time passed, many participants became more comfortable with the decision to end the list and with Covid-19 in general. Their increased knowledge and understanding of the risks played a role in this shift. One participant reflected:

‘In the beginning [of the pandemic], I was petrified of everything. You know, letters coming through the door, et cetera. And obviously over time we all got more knowledge about it. I’m one that likes to read things and listen to things, so I like to find out about it, being informed about things. So, I learned a lot obviously. So, I think by the time it [the list] ended, I was quite comfortable with the ending. I felt it was the right time.’

Stakeholders reported that opinions were divided among those on the Highest Risk List. Some were relieved and welcomed the return to normalcy, while others remained anxious about the possibility of catching the virus, especially as Covid-19 cases resurged. One stakeholder illustrated this:

‘So we had some people that were really happy that masks were dropped, that things were now safe and life could come back to somewhat normal for them that they had longed for, because they really struggled during lockdown and during that shielding, so really welcomed it and embraced being able to breathe in, … in the fresh air… I would say we’ve got half who [are happy with lessened restrictions and return to normalcy], and the other half who are incredibly, incredibly still anxious about perhaps catching it, and in particular when they notice that you’re hearing more and more people getting covid again’ [Stakeholder].

Stakeholders also noted that for some who were on the Highest Risk List, the fear of contracting the virus persisted despite the current absence of guidance, making some individuals more cautious than others.

‘It was always in the back of your mind, you just need to meet one person…no matter what steps you take, that risk is still there. And I think for some families that is more profound than others. And some will hold onto that and maybe no guidance will make them feel more confident; While it’s there and out in the environment, the fear is still there for them.’ [Stakeholder]

4.2 Managing Risk and Making Decisions

As we adapt to the ongoing challenges of living with Covid-19, the experiences of individuals in the higher risk category significantly differ from the broader population. This section examines how those who were asked to shield are currently managing risks and making decisions.

Almost three-quarters of the total survey sample (72%) reported that they feel comfortable doing most (or all) of the things they did before Covid-19 (Figure 4.3). In contrast, only half (49%) of those who identified as having been asked to shield said that they feel comfortable doing most or all the things they did before Covid-19.

One in four (23%) of those who were asked to shield report feeling comfortable doing some of the things they did before Covid-19 while one in five (19%) report that they still assess each activity on a case-by-case basis. There remains 7% of those asked to shield who still try to minimise all physical contact with people from other households.

Base: All n=3,314, ASE n=478

Respondents who were not from a single-person household were asked about the behaviours of other members of their household (Figure 4.4). The majority of all respondents (72%) reported the other people in their household felt comfortable doing most (or all) of the things they did before Covid-19. However, around half of respondents with any shielding experience (54%) reported the other people in their household felt comfortable doing most (or all) of the things they did before Covid.

Base: All, n=3,258. ASE, n=478

Those with any shielding experience were asked how they currently make decisions around activities that they did not or could not undertake during the shielding period, and they were able to select all the options relevant to their decision-making process (Figure 4.5).

The majority reported making their own assessments and judgements around what they consider to be safe (73%). Just over a fifth of respondents continue to follow the advice of their GP or clinician (22%) with fewer looking to or following current (15%) or former (9%) Scottish Government guidance.

A minority of those with shielding experience said that they follow the advice of their family or friends (6%) or others who are vulnerable to Covid-19 or had experience of shielding (5%).

Base: ASE n=487

From a broader perspective, when it comes to everyday decision-making, there were clear differences between those who were asked to shield and the broader population, Notably, the most crucial factor people considered when assessing the risk associated with an activity was the level of ventilation in the vehicles or public transport they use, with 50% of the general public and 68% of those who had been advised to shield deeming this factor as very or somewhat important, see Figure 4.6.

Additionally, the number of people around them and their familiarity with these individuals played a significant role, with 48% rating this as very or somewhat important, rising to 65% among those who were asked to shield. The degree of ventilation within a building or space also factors into their decision-making, with 47% finding it very or somewhat important, and this importance increases to 66% among individuals who had experienced shielding. In contrast, the use of facemasks or other personal protective equipment by others was considered the least important factor, with only 22% of all respondents, and 40% of those asked to shield, regarding it as important in their decision-making process.

Base: All n=3,317, ASE n=487

4.3 Impacts of the HRL

Those with shielding experience were offered the opportunity to reflect on the positive impacts of being included on the HRL (Figure 4.7). A quarter (25%) have tried to live (even) more healthily or have extra support from family or friends (24%). Fewer reported better relationships with family or friends (12%) or extra support when accessing healthcare (12%). Only 6% reported a positive impact on improved mental health. Unfortunately, around half (51%) reported none of the positive impacts listed.

Base: ASE n=487

When thinking about the concerns people have had over the ending of the HRL, the most common worry was that people might become complacent (43%), (see figure 4.8). This was closely followed by a concern that people might be less mindful of the needs and concerns of those who were on the HRL (37%). Fewer had concerns that it might be difficult or complex to re-establish the HRL if needed in the future (17%) while a further 4% were concerned for another, non-specified, reason. A third (33%) of those people with shielding experience had no concerns about the ending of the HRL.

Base: ASE n=487

When examining interventions that could help manage levels of concern since the ending of the highest risk list, more than half of those with concerns (59%) supported encouragement for ongoing vaccination for Covid-19 while 47% supported better ventilation in public places (Figure 4.9). This is closely followed by more regular information on the number of Covid-19 cases (45%), updated guidance for those who were on the HRL (45%) and ongoing government guidance on behaviours that reduce Covid-19 transmission (44%). Just over a quarter (27%) would become less concerned following advice from their GP on how best to manage their individualised Covid-19 risk.

Base: ASE with concerns over ending of HRL n=289

4.4 Behaviour since the end of the Highest Risk List

Participants who had been asked to shield exhibited varying degrees of ease when adapting to living with Covid-19 during interviews. Some individuals found this transition relatively easy, embracing a sense of normalcy or controlled vigilance.

Others described initial difficulties adapting when the list ended, particularly regarding social activities. For them, the sudden transition to normal life was a challenge due to anxieties around the potential of Covid-19 on them due to their conditions.

However, some participants felt that as more information became available and guidelines evolved, they became more relaxed and in control of their actions. Over time, they adapted to the new reality, understanding the recommended precautions and embracing a more confident attitude towards living with Covid-19.

Conversely, some participants found it challenging to adapt to the changing Covid-19 landscape, despite overall progress in managing the virus. Factors such as agoraphobia, recent childbirth, and heightened anxiety around germs contributed to this difficulty. For them, adapting to the evolving Covid-19 guidelines was a slower process, highlighting the need for further work on factors that hinder adaptation.

Certain individuals shared that their discomfort with the new normal was influenced by observing others who disregarded safety measures, particularly mask-wearing, causing them to feel vulnerable:

‘I think my only concern was that wherever I went at the end of the restrictions, the advice was still to wear masks and so on. And I think a lot of people sort of abandoned that, because…probably got just fed up with the whole thing…So, I was always quite aware that, you know, we could be still susceptible here to catching infection because other people had just, just abandoned that.’

In summary, participants exhibited a range of responses when adapting to living with Covid-19, with some finding it easier than others. Factors such as individual disposition, health conditions, and evolving guidelines influenced their level of comfort and adaptation to the changing circumstances.

4.5 Ongoing shielding behaviours

Participants in interviews who had been asked to shield described varying levels of engagement in ongoing shielding behaviours. Interestingly, some participants initially claimed they weren't practising any shielding behaviours. Still, upon further exploration, they revealed that they did engage in such behaviours in certain situations.

Some individuals exhibited self-protective behaviours, including carrying hand sanitiser constantly, refraining from cash transactions, frequent self-testing when experiencing symptoms, consistently ventilating their home, and insisting that all visitors to their homes use hand sanitiser. These precautionary measures were rooted in concerns about contracting Covid-19.

Some participants also acknowledged that their shielding behaviours were automatic, driven by habit, rather than a conscious risk assessment or objective guidance. It became second nature to them, making it difficult to disentangle the reasons behind their actions:

‘I think a lot of it is just habit now. It’s just instant. And you find yourself doing something and not actually realising you’re doing it until you’re actually doing it or have done it.’

Specific triggers were mentioned as the cause of engaging in Covid-19 related behaviours nowadays. For instance, one participant reported having taken a test after they met with a relative who later tested positive for Covid-19.

Some participants found it challenging to pinpoint the precise reasons behind their behaviours. and discussed overcompensating due to their own risk assessments. A lack of a definitive statement on the level of risk to those previously on the HRL may have contributed to this variability.

This supports the idea that providing unambiguous information can help people make decisions about their behaviour more easily. Participants also mentioned that being on the shielding list initially and gaining a better understanding of Covid-19 provided them with a sense of comfort.

Some stakeholders felt that the ongoing precautions of individuals on the shielding list were justified, emphasising a human rights-based approach that allows individuals to make their own risk assessments. However, they also stressed the need for more information to help people self- shielding make informed decisions. They called for better data collection and surveillance to provide individuals with the information they need to decide when and how to return to normal activities.

‘There really isn’t enough evidence available in Scotland, whether that’s on the number of cases or …vaccine uptake, all those kinds of things. Scotland doesn’t seem to be publishing that data…we’ve heard from so many …patients that rely on that information to make their own individual decisions as to whether to leave the house, whether they go back and do normal things again. So we’d really be looking for the Scottish Government to commit to establishing their own model of long-term surveillance and data collection’ [Stakeholder].

4.6 Level of anxiety around Covid influencing shielding behaviours

Participants displayed varying levels of anxiety regarding ongoing self-shielding and adapting to living with Covid -19. Some participants had adopted a perspective that Covid-19 was a virus they would need to coexist with, much like the common flu or cold. They viewed the end of the Highest Risk List as a natural progression, accepting that they had to learn to deal with the virus. Their attitudes were influenced by their previous health experiences, and they considered Covid-19 as just another illness to manage.

One participant, with a history of severe medical conditions, demonstrated this attitude toward Covid-19. When asked about how they had adapted to living with Covid-19, they compared their approach to managing the virus to taking necessary medications – a non-negotiable aspect of their life:

‘It’s just the same as any other virus or illness that we get. I go in, I get my Covid injection, I get my flu injection. It’s like all the drugs I take, if I don’t take my drugs I will die…with Covid or any other disease that our world gets…these diseases come along, yes it takes people, unfortunately, people die, but you learn, medicine learns, and we go forward.’

Another participant maintained numerous ongoing shielding behaviours after the list had ended. This participant's actions were prompted by a deep-seated fear of unintentionally transmitting Covid-19 to others, which could be seen as an anxiety-induced fear:

‘I wouldn’t like to know that if I had Covid and I've not known about it then I could potentially pass that to somebody and they could die. I couldn’t live with myself knowing that.’

This quote illustrates the level of anxiety that may be driving some individuals’ ongoing shielding behaviours

Given the impact that such apprehensions could have on hindering this participant, and perhaps others, from adjusting to life with Covid-19 without succumbing to fear or anxiety, it would be beneficial for future guidance to address those who tend to be extremely cautious in reassuring around the level of risk.

Another participant, living with a health condition that shares symptoms with Long COVID, held anxiety about the general public's return to normalcy after Covid-19. They shared insights into the debilitating effects of long-term fatigue, drawing parallels between their own condition and Long Covid. They felt that society's rapid return to normal was premature and were alarmed by the lack of precautions currently in place:

‘Yeah [making decisions about how to behave around covid causes me anxiety]. I think because long covid is like chronic fatigue syndrome, I feel like I have got a real insight – that the general population doesn't have – into what it's like. I kept trying to work and I eventually had a chronic fatigue crash, and I was off work for a year. I wasn't able to get out of bed and dress myself. I couldn't make food. I had to pee in a pot at the side of my bed. I couldn't do anything. And that is what the fatigue is like with Long Covid. I managed to build back up to four hours work a week, but it is a godsend…folk have no idea what that's like. So, I'm looking at, you know, people thinking, “Oh, we don't need to bother about it anymore”…and I feel afraid. Because most people feel, “Oh, we're not seeing anything on the news about it. You know, the government isn't saying that we have to do anything, so it's fine.” No, that's not the case…So, I'm frightened about it.’

4.7 Vaccinations and impact on post-HRL behaviour

Vaccinations had varying impacts on participants' perceptions of risk and their ability to adapt to living with Covid-19. For many, receiving the Covid-19 vaccine brought a sense of comfort and reduced their concerns about the virus, facilitating their adaptation to the ongoing situation. For example:

‘I think when the vaccines came out, it was a kind of, that was a kind of relief from things, that definitely was a kind of change and a turning point.’

However, an alternative perspective was shared by a participant who had not initially received the vaccine while pregnant due to concerns about potential risks to her child. This decision left her feeling anxious about Covid-19 even after the vaccines became available. She emphasised the importance of further research on vaccine safety, especially for vulnerable populations like pregnant women.

‘I couldn't take my Covid jab because I was pregnant at the time and it made me severely anxious because there wasn’t much research done, and they kept sending letters to go and get it and I didn't take it til after I’d had my baby. I'm not saying that it's not right, [that] it's not helped people, but there wasn’t a lot of research done at the time. I still only to this day only had one vaccine.’

4.8 Summary

Throughout the qualitative research, it became apparent that individuals' behaviours in adapting to life with Covid-19 after the conclusion of the shielding period fell into four distinctive categories:

1. Complete Adaptation: These individuals returned almost entirely to their pre-pandemic routines.

2. Moderate Adaptation: Some participants initially found it challenging to adapt and adhered closely to government recommendations of the time, continuing to practice shielding behaviours more meticulously than those who were not vulnerable and in close contact with vulnerable individuals. Their level of shielding behaviours typically corresponded with the additional risks they faced.

3. Struggle with Fear of Covid-19: A subset of individuals faced significant difficulties adapting to the post-shielding period due to a deep-seated fear of contracting or spreading Covid-19.

4. Severe Struggle with Adaptation: Another group of participants encountered substantial challenges adapting to life after the shielding period, often influenced by external factors such as family members' vulnerability or personal anxieties surrounding germs and other issues. Their behaviours were perceived by some as excessive, not entirely aligned with public guidelines, primarily driven by anxiety.

In all categories except for the first one, participants indicated a desire for increased government guidance to provide more clarity, both in terms of the measures currently in place and the ones that are not, and how these might evolve in Scotland in the future. This would facilitate more informed decision-making, as discussed in the sections concerning communication and prospective scenarios.