Exploring the attitudes of solid organ transplant recipients towards COVID-19 shielding communications and the language of ‘clinically extremely vulnerable’: a qualitative study investigating lessons for the future

Inclusion criteria and recruitment

Individuals over 18 years old who received a heart, liver or kidney (including kidney-pancreas) transplant from a deceased donor through the UK NHS were eligible for inclusion in the study. In align with the UK National Transplant Registry, which reports kidney function at 12 months post-transplant, eligible individuals were also required to have received their transplant at least 12 months prior. This cut-off thus enables the study to be more easily linked to other research and ensures individuals are fully recovered from their surgery. Participants were recruited through one of three methods. First, eligible participants were identified via medical records at Cambridge University Hospitals NHS Foundation Trust and the Royal Papworth Hospital NHS Foundation Trust, and invited to participate in the study by DS and JA on behalf of the qualitative interviewer, AEG. Second, the study was advertised through the newsletter of the Addenbrooke’s Kidney Patients Association (AKPA) and the Facebook page of the Addenbrooke’s Liver Transplant Association, both based in Cambridge. Interested individuals could ‘self-recruit’ onto the study provided they matched the eligibility criteria. Finally, a small number of participants were recruited after meeting AEG at the 2022 British Transplant Games and expressing an interest in taking part.

Data collection

Each participant was individually interviewed once via a semistructured interview between January 2022 and May 2023. Participants were able to choose the date and time of their interview and the medium through which it took place (in person, over the phone or via video). It was made clear to participants that they could end the interview at any point, take breaks and invite a friend/family member to the interview with them. Informed written and verbal consent was obtained prior to each interview, including permission for the conversation to be audio recorded. All interviews were conducted by the same researcher (AEG).

The interviews unfolded in an informal conversational style to allow space for participants to direct the discussion towards areas they felt were important, although a broad interview guide was developed to help prompt participants and ensure the core research aims were addressed (see online supplemental material 1). Acknowledging that the present study emerged from a wider project, participants were not explicitly asked to give their opinion regarding shielding communications or the language of ‘CEV’. While the experience of COVID-19 was touched on in every interview, this was not the direct focus of the study, and participants were only asked to comment on how they felt about the pandemic and being asked to shield. As a result, this study has emerged from the unprompted comments made by numerous participants.

Data analysis

Interview recordings were transcribed verbatim and anonymised by AEG. Drawing on Braun and Clarke’s16 work on reflexive thematic analysis, their six-phase process for data engagement was employed as a guiding framework for data analysis, conducted by AEG. This involved data familiarisation, systematic coding (via NVivo V.12), generating themes, reviewing and refining themes and ‘reflexive engagement with theory, data and interpretation’.16 It was during this iterative and reflexive process that the role of COVID-19 in the lives of SOT recipients became clear as a distinct theme, and from which the focus of this present study developed.

To ensure agreement in the coding and analysis process, triangulation of the data occurred between AEG and a second qualitative researcher, with this researcher first independently assessing four transcripts against the thematic framework, followed by a discussion of data interpretation and subsequent agreement in the coding process. In examining the data beyond simply the coding framework, thematic analysis allowed for a deeper exploration into individual experiences, attitudes and opinions.

Patient and public involvement

Patient and public involvement (PPI) was first initiated at the planning stage of the study, with members from the AKPA giving feedback on the study aims, participant information sheet and drafted interview questions. All feedback and suggestions were considered and implemented. Additionally, the study results were discussed with members of the AKPA, with individuals given the chance to comment on the findings, express their views and opinions and note additional points. These comments are incorporated in the findings below.

Participants

43 participants were interviewed between January 2022 and May 2023 (table 1). Of these, 15 participants chose to be interviewed over the phone, 14 were interviewed via video call and 14 were interviewed in person at a location of their choosing. Interviews lasted for a mean length of 1 hour 40 min (range 30 min to 3 hours 21 min), with participants given the time to speak for as long or as little as they liked.

Four themes were identified in relation to participants’ experiences of the COVID-19 pandemic: (1) attitudes towards shielding communications; (2) attitudes towards the term ‘CEV’; (3) fear; and (4) long-term impacts. These themes were discussed unprompted by 17 of the 43 participants (39.5%). Recognising the novel nature of the terms ‘shielding’ and ‘CEV’, and the lack of research exploring attitudes towards them, this study primarily focuses on the first two themes.

‘Frightening letters from the hospital’: shielding communications

A number of participants commented on the fear they felt on receiving an official shielding letter at the start of the pandemic:

[T]he severity of the communication I received, um… they were all quite terror-inducing. (P12)

I started getting frightening letters from the hospital. (P43)

Expanding on why shielding letters incited such ‘terror’, some participants indicated that being told to stay home at all times, combined with information suggesting that their CEV status increased their risk of dying from COVID-19, resulted in a conviction that death was certain, rather than only increased, should they ignore the shielding advice and leave their home:

[W]hen you get letters saying ‘if you leave the house, you will die’, you tend to stay indoors, cause that very much was put like that, and that’s what you’re told… And the original shielding letters were even ‘if you want fresh air open a window’… it was quite scary when you’re told that if you catch it you will die. (P4)

Participant 4 highlights the severity of the information within official shielding letters, perhaps explaining why, despite being voluntary in theory, there was strong adherence to the advice set out.5 17 18 However, official NHS/government letters were only one medium through which individuals received shielding information, with daily news reports a further, ever up-to-date source that a participant engaged with. Rather than purely informative, however, some participants commented on how scary it was to hear such reports:

The whole world was scared. You could see it on the news readers [faces] and in their voices, and it was all very scary, but it was like, you know, to the clinically vulnerable, ‘don’t step outside your house!’, and it was like ‘oh my God, am I gonna die?!’… but the way the media were like ‘clinically vulnerable people are ten times more likely to die’, it’s like, you’re talking about people in that way, it’s really scary! (P27)

Reports that CEV people were more likely to die from COVID-19, while evidently intended to reassure the majority of the nation—those individuals deemed ‘healthy’ and ‘normal’—that they need not worry so much, in turn appeared to result in heightened fear and anxiety among those identified as CEV, who were being unwittingly used as a national benchmark for risk of illness and death. Such reports served to ‘other’ individuals with underlying health conditions, positioning them apart from the rest of the nation and ignoring the fact that they are ‘talking about people in that way’. Additionally, the distress sparked by such communications also had an impact on the friends and family of ‘CEV’ individuals. Participant 8 discussed the anxiety her husband felt when she contracted COVID-19:

I wasn’t really that bad, like I thought I would be, cause they kind of sold it to you that, you know, you’re so vulnerable that if you get it it’s gonna be really serious. And I remember my husband, he used to check that I was still breathing… That’s how it was kind of explained to people, that you have to shield because it’d be so serious if you get it. (P8)

Despite the fact this participant did not become that unwell with COVID-19, her husband was still concerned she would stop breathing as the shielding communications ‘sold it to you’ that contracting the virus would result in serious illness. A number of participants also commented that their family members were ‘fanatical’ about them contracting COVID-19 and ‘convinced… [that] if she (participant’s wife) gets it, I’m gonna get it and I’m gonna die’ (P6). As such comments illustrate, the shielding advice set out in the UK’s COVID-19 response incited significant fear and anxiety among SOT recipients (as well as their friends and family) that they would likely die should they contract COVID-19.

‘You’re not that normal after all’: being classified as ‘clinically extremely vulnerable’

In addition to the newly employed term ‘shielding’, the phrase ‘CEV’ similarly became a mainstay of the UK government’s COVID-19 lexicon. However, within this study participants expressed dislike for the phrase, with particularly strong feelings towards the word ‘vulnerable’:

[A]s soon as you get labelled as ‘clinically extremely vulnerable’, while you understand why they’ve done that… it’s a tricky thing to come to terms with. You know, and actually up until that point I’d felt pretty normal. But then when you kind of get singled out as someone to be sort of protected and is vulnerable, there’s something about the word vulnerable that I think has a real… you know, sort of difficult connotation and difficult ring to it, that it makes you feel sort of weak, and things, so that was hard, that was quite tricky. Um… because you know, the weird thing is you don’t feel vulnerable, you feel physically fit, you feel great! You know and all through the [transplant] process, you know, all the hospital staff are all telling you ‘oh, you’ll be able to go on and live an amazing life!’, so all of a sudden to be told ‘no… you’re not that normal after all’, it’s hard, you know? (P7)

Evidently, the discrepancy between being labelled ‘CEV’ while simultaneously feeling ‘normal’ and ‘physically fit’ resulted in some participants having difficulty accepting the CEV label. As this participant notes, transplant patients are often informed that they will be able to lead a healthy life post-transplant. However, with the emergence of COVID-19, SOT recipients found themselves being ‘singled out’ and ‘othered’: a far cry from the life of normality many patients expect to live. Furthermore, the language of ‘protected’ and ‘weak’ hints to the connotations of helplessness and passivity that the word ‘vulnerable’ sparks, further explaining the widespread dislike of the term. Far from alone in not feeling vulnerable, the difficulty in feeling healthy yet being labelled as CEV elicited a number of comments from participants:

It was very, very hard work, because obviously I was classed as vulnerable and all that, but I didn’t necessarily feel it, but I had to isolate [shield] and it was, you know, it was quite a difficult time. (P18)

I started getting frightening letters from the hospital saying ‘you’re clinically extremely vulnerable. You mustn’t go out, you mustn’t do this, you mustn’t do that’… I kept being told ‘you’re clinically extremely vulnerable, you must have all these vaccines’, so I’ve been reminded externally in quite a brutal sort of way that I wasn’t… I wasn’t as good as I felt I was. I mean I felt fantastic, and in fact I'm not, and that took quite a lot of accepting. (P43)

There was often a disjuncture between how people felt about their health and the identity of illness and weakness that the label ‘CEV’ projected on them. For participant 43, communications informing him of his CEV status were a ‘brutal’ reminder that he was not as healthy as he felt, while participant 18 explains how hard she found having to shield when she did not feel vulnerable. In turn, this suggests that being labelled as CEV may have had a negative impact on the mental well-being of SOT recipients who felt it did not match their ‘normal’ and ‘healthy’ self-identity. For others, their dislike at the term ‘vulnerable’ seemed to stem less from it contradicting feelings of health and more from the connotations of the word itself:

I wasn’t happy with it at all, in fact, being (makes air quotes) ‘vulnerable’, you know… I didn’t suffer anxiety going back to work. I had to clean my desks and stations, I followed the rules, but I couldn’t walk around with a bloody sign saying ‘vulnerable person’ stuck on my head. (P31)

This participant’s comment regarding not wanting to walk around with a CEV sign attached to them clearly demonstrates their dislike for and rejection of such a label. Aside from publicly highlighting that one has an underlying health condition and ‘othering’ them, such a sign would also result in the label of ‘CEV’ becoming one’s central and defining identity marker, ignoring, or even subsuming, all their other identities.

‘I’m so scared that if I get it, I will not survive it’: fear and long-term impacts

Despite the fact England’s shielding programme ended in April 2021 and compulsory mask wearing ceased in January 2022, many participants indicated that the fear and anxiety they felt persisted long beyond this:

I haven’t been to the supermarket for two years, I have all my shopping delivered… I can’t even contemplate going into a crowded shop… That’s not a great way to live your life but it’s fear. I’m so scared that if I get it, I will not survive it. (P2, interviewed January 2022)

Circling back to the argument that shielding communications incited fear by suggesting that death was probable, or even certain, should one leave their home, participant 2 discusses the fear she feels even at the thought of going shopping. Crucially, the phrasing of this comment indicates that this fear is still very much present, despite the fact this participant was interviewed 9 months after shielding ended. Similarly, numerous participants indicated that they were too scared to stop shielding when regulations ended, and thus self-imposed restrictions on themselves:

I’ve still I guess been self-imposed shielding, not going anywhere. (P6, interviewed February 2022)

I just stay indoors… And two years of that changes how you think, and it’s probably changed how I think more than having the transplant… that’s affected me more than having somebody else’s organs put inside my body, which I find quite bizarre… I’m very cautious now. I still wear a mask if I go out and about in public… I won’t go into crowded, closed spaces at all now, I just won’t do it. (P20, interviewed May 2022)

For these participants, despite the fact both shielding and mask regulations had ended months prior to them being interviewed, the fear and anxiety they continued to feel towards COVID-19 was clear. Again, this fear relates to leaving one’s home and coming into contact with others, resulting in many participants continuing to self-impose shielding and mask wearing. Hence, while COVID-19 restrictions may have come to an end, their impact—both in terms of how people feel and in terms of how people act—persists. Participant 20’s comment that shielding has affected him more than receiving his transplant emphasises that for many people shielding is not simply a short-term, contained event, but has had significant long-term psychological impacts, as can similarly be seen from participant 5:

[I]nitially, it was ‘oh, gosh, you know, we can’t go out anyway just in case’, and then it became difficult to go out, [to] find the confidence to actually go out. (P5, interviewed February 2022)

As this comment illustrates, extended periods of shielding have a ripple effect, not only causing fear, but leaving some with a lack of confidence to return to ‘normal’ life after being isolated from the outside world for over a year. Evidently, the restrictions put in place to protect ‘CEV’ people have resulted in a number of additional, ongoing mental health impacts.

Limitations and strengths

A notable limitation of the study relates to the fact the majority of the participants (n=41) received their transplant and/or ongoing care at Cambridge University Hospitals NHS Foundation Trust or the Royal Papworth Hospital NHS Foundation Trust, both in Cambridge. This lack of geographical diversity may mean that the results of this study are not representative across the country, especially given the fact that UK restrictions differed by region from October 2020 onwards. Furthermore, as a result of the study’s eligibility criteria, only heart, liver and kidney transplant recipients were recruited. Of notable exception are lung recipients, who may have particularly relevant opinions given COVID-19 is a respiratory virus, with some individuals requiring a lung transplant following severe COVID-19 infection. It is likewise important to acknowledge that this study stems from a separate, broader project, and as such participants were not asked to explicitly comment on any of the topics discussed in this paper. Hence, this study should be viewed as a starting point, and future research should include more explicit and tailored questions on COVID-19 to draw out further insights. Nevertheless, the strengths of this study stem from using qualitative semistructured interviews that allowed participants to express their attitudes and experiences openly and freely. Participants were able to direct the flow of conversation towards areas they felt were important, and their voices were placed at the fore of data analysis. It is a result of this participant-led approach that the focus of this present study emerged.

Recommendations for the future

The likelihood of a pandemic similar to COVID-19 occurring in the future is high and potentially increasing.15 26 Recognising this, numerous national and international inquiries and committees have been established with the aim of learning from the COVID-19 pandemic for the future.27 28 Using the above data, this study follows suit and outlines a number of recommendations for how governments and health authorities can better communicate with ‘CEV’ groups in future pandemics. While this study has thus far focused on the UK, the following recommendations are applicable to governments and health agencies across the world.