32 people with LTCs took part and their characteristics are presented in Table
1. Individuals were aged 32–75 years and the majority identified as female (
n = 21/66%) and white British (
n = 23/72%), but a wide range of demographic groups were represented. LTCs are reported in full in Table
2, but most commonly reported were cancer (
n = 12/38%), respiratory conditions (
n = 10/31%) and cardiovascular diseases (CVD) (
n = 9/28%). Six participants (19%) reported a co-occurring mental health condition. Interviews were between 31 and 150 (mean 65) minutes long.
Table 1
Participant characteristics
Age (years) |
Range | 32–75 |
Mean (SD) | 57 (13) |
Sex n (%) |
Female | 21 (66) |
Male | 11 (34) |
Ethnicity, n (%) |
White British | 23 (72) |
White - Other | 3 (9) |
Indian | 2 (6) |
Mixed ethnic groups | 2 (6) |
Black - Other | 2 (6) |
Marital status, n (%) |
Married/Civil Partnership | 16 (50) |
Divorced/separated | 7 (22) |
Single (never married) | 8 (25) |
Widowed | 1 (3) |
Education, n (%) |
GSCE (or equivalent) | 3 (9) |
A-levels (or equivalent) | 5 (16) |
Undergraduate degree | 12 (38) |
Postgraduate degree | 12 (38) |
Employment, n (%) |
Employed | 9 (28) |
Unemployed | 19 (60) |
Furloughed | 3 (9) |
Studying | 1 (3) |
Living situation, n (%) |
Live alone | 9 (28) |
Live with others | 23 (72) |
Table 2
Long-term health conditions (LTCs)
Respiratory (e.g. asthma, COPD) | 10 (31) |
Cardiovascular (e.g. high blood pressure, heart disease) | 9 (28) |
Musculoskeletal (e.g. osteoporosis, osteoarthritis) | 8 (25) |
Cancer (in remission) | 7 (22) |
Current cancer diagnosis (incl. Advanced/incurable cancer) | 5 (16) |
Diabetes | 5 (16) |
Autoimmune (e.g. rheumatoid arthritis) | 5 (16) |
Neurological (e.g. Parkinson’s Disease, Multiple Sclerosis) | 4 (13) |
Renal (e.g. kidney condition, interstitial cystitis) | 2 (6) |
Inflammatory Bowel Disease (e.g. Crohn’s) | 2 (6) |
Organ removal/transplant (e.g. spleen removed, liver transplant) | 2 (6) |
Comorbid mental health condition (e.g. anxiety, depression, schizophrenia) | 6 (19) |
High levels of fear and anxiety related to perceived consequences of COVID-19 infection
Heightened awareness of risk due to LTC
Participants described fear and anxiety caused by awareness of the potential implications of catching COVID-19. Some described a heightened sense of risk, coupled with an understanding of the need to protect themselves:
“There’s been some degree of added stress, I suppose, because it became relatively clear, relatively early, that [COVID-19’s] something that really, given my circumstances, I should be careful not to catch.” (male, 30–39, cancer).
However, heightened awareness of risk did not always lead to additional worry, with some participants discussing elements of chance or fate in the outcome:
“My medical condition, I’ve had it all my life so if that places me in a higher risk category, you’ve just got to do your absolute best to not catch it and then after that it’s sort of in the lap of the Gods really isn’t it? So it didn’t really upset me or stress me or worry me” (female, 40–49, respiratory condition).
Fear of hospitalisation, ventilation and death
Other participants described the specific risks that COVID-19 infection could lead to, including long-term health problems, risk of hospital admission, ventilation, and dying, and acknowledged the negative impact of this on mental health:
“I don’t want to catch it, [I have] already experienced being on a ventilator before for 17 days and I never want that experience again…” (female, 60–69, cancer, CVD).
“I’m terrified of getting this virus, because I know that if I get it, it probably is the end of me. My lungs are not good … I don’t want to die in hospital and I don’t want to have that intubation and sedation” (female, 70–79, respiratory condition).
“I’m really scared of getting [COVID-19] … I think I probably would not survive if I got it, so I’m trying to keep away from it … when I heard about [COVID-19], I just automatically went, oh my God, I’m going to die. It wasn’t great” (female, 30–39, CVD and respiratory condition).
Impact of shielding/isolation on mental health and wellbeing
The COVID-19 restrictions imposed on the participants’ lives led to a number of negative consequences for mental health. Many were in the extremely clinically vulnerable group and therefore advised to shield, or had made the decision to isolate. This led to specific concerns, as well as discussion of factors that alleviated these worries.
Concerns about access to essential supplies
Participants discussed the ability to access essential supplies (e.g. food, medical supplies) as having strong influences on mental health. Those who found it difficult to access food and medical supplies were fearful and anxious:
“they ended up cancelling my vulnerable status on their [online shopping] system, cancelling my delivery slot. … .. And now the next delivery slot is three weeks away. So, what am I meant to do? How the hell am I going to cope now? I haven’t got three weeks’ worth of food” (male, 30–39, cancer, respiratory condition, low immunity).
“… the pharmacy’s not providing any service of delivery to vulnerable people, and the GP’s are arguing with me, to say, why are you ordering medication a week before it’s due date? Or whatever, but I can’t order one item at a time, who’s going to go and pick it up, for a start? And when it runs out, it’s going to run out, and I’m not going to have anything to replace it…” (female, 50–59, multiple conditions).
Participants reported issues around receiving the necessary shielding certification that would allow access to (e.g.) priority status online supermarkets:
“I didn’t get a letter [from the Government/National Health Service (NHS)] for ages because they weren’t able to identify me and the therapy from that essential health data. So, yes it was a bloody nightmare to be honest” (female, 40–49, cancer).
Those who had Government certification/other shielding arrangements (like social and neighbourhood networks) in place acknowledged the positive impact of this on their mental health:
“I registered very early with the supermarket vulnerable list, I think, that the government was sharing with them. And I think because I got my shielded letter, very early on I got an email from [supermarket] saying, you’re on the vulnerable list and we’ll prioritise slots. So we’ve been very lucky that we actually managed to get slots when we need” (female, 30–39, autoimmune condition).
Others spoke about how they stockpiled supplies to reduce anxiety:
“I actually made sure that I had an extra stock [of medication]. I put an extra repeat prescription in before the lockdown and I’ve just put another one in..” (female, 40–49, cancer).
“I suppose I panicked a bit and I got a delivery thinking I’d better be prepared. I do have a certain amount of food in anyway because living alone, I’ve got to be prepared for a bad cold or something … I thought oh, a couple of months, I’d better order all the tinned stuff …” (female, 70–79, neurological and musculoskeletal conditions).
In addition to the impact of social networks in supporting shielding, participants described polarised experiences of whether they felt supported by friends and family members to shield. Those who felt supported described the positive impact:
“Most of the time [the family are] in the house … Everybody’s on the same page … Maybe if I hadn’t had gone through everything I went through last year and when kids see you poorly and what have you, and it’s cancer, so it’s the C word, isn’t it? It’s made everybody think on the same wavelength … it’s had its moments … But as a family, we’ve done well with it to be honest” (female, 50–59, cancer).
However, some described challenges that arose from having to justify their need to shield. This led to worries about offending others, arguments, and had an extremely detrimental impact on mental health:
“Without sounding harsh, my sister just didn’t get this idea of me needing to isolate. So, she kept trying to come up and see us. We were relying on her to bring us food and things like that. But she just kept hanging around.. … I think that was probably one of the tougher ones because I think from her point of view, she just seemed to think that I just wanted her to not be around, whereas this is the advice I’d been given” (male, 30–39, cancer, respiratory condition).
“[my son] was living at home … he left during the lockdown because I had the letter from the NHS saying I was vulnerable. At the beginning, his girlfriend came and then she went. And he wanted her to come back and I had to say, no … so he left … It was awful … I felt absolutely devastated … The other [son] had gone a few months before he’d gone. I was left on my own, my partner had left me [last year] after 22 years … I blamed myself. I didn’t know. I was very down, very depressed” (female, 50–59, cancer, respiratory condition).
Some participants also reported feeling aggravated by friends and family who they believed were not following the social distancing rules relevant to them and this putting strain on relationships:
“we’ve got friends who are in their 70s, and they’re so gung-ho about the whole thing. We’ve had arguments with them to get them to stay in, because they’re all really social … we had a hell of a job persuading them not to do that because of what’s happened, because it’s all just dissolved into a shambles” (male, 60–69, neurological condition).
Loss of independence and reliance on others
Although social networks were important, participants discussed the need to rely on others and loss of independence as difficult:
“I was especially jealous of my girlfriend, who didn’t have to shield. She made sure that before she starts work in the morning, she goes for a walk for at least 45 min to an hour … She also had to do the grocery shopping. And there was once or twice during lockdown that I needed my prescriptions to be refilled. She had to do that. So, in a sense, I felt overly reliant on her … .. So yes, that was difficult” (male, 40–49, blood condition).
The difficulty in relying on others resulted in one participant going out to shop despite guidance against it:
“I don’t like relying on people. I hated to have to ring people up. At the very beginning, lots of people were getting in touch … Then it tailed off a little bit and I don’t like ringing people and asking for help … I just felt really guilty for it. I just thought, I won’t bother anybody, I’ll go and do it myself” (female, 50–59, cancer, respiratory condition).
Feeling safe versus feeling isolated
Some participants reported that, despite missing friends and family, the enhanced feeling of safety and security through lockdown was reassuring and protective for mental health and a worthwhile trade-off:
“we’re in lockdown, it’s not great, but … I think the sense of relief kind of outweighed any frustrations really … … I’m just happy to proceed like this until we see what’s going to happen …” (female, 30–39, bowel condition).
However, others found not seeing friends and family one of the most challenging aspects to deal with:
“I’m desperately worried about [my mother-in-law]. She’s got serious Alzheimer’s. She’s alone, she’s not seen any of her family for months and she’s just sitting in a room. She’s starving to death because she’s not eating any more. She’s going to die at some point probably in the next six weeks at this rate. And it’s possible that we’re not going to be able to see her. It’s horrendous” (male, 40–49, autoimmune condition, CVD).
Some participants who were shielding and living alone suffered particularly with social isolation. Two disclosed that the extent of the social isolation (in combination with other factors related to the pandemic including loss of work through furlough/redundancy and worries about management and treatment of their LTC) led them to contemplate/attempt suicide:
“because you’re stuck at home and if you don’t talk online to somebody or over the phone to somebody then you’re on your own and you’re just going to go downhill. There’s that fear that I could get back to being suicidal … I’ve had periods where I have felt very low and struggling and very alone, and I think living on your own is just shit. People that are part of a couple or a family and whatever have got other people around” (female, 50–59, neurological condition).
Others discussed loss of physical contact as particularly difficult:
“there’s the desire to hug and shake hands, just human contact sometimes … I miss a little bit of human contact obviously” (male, 50–59, CVD).
Experience of healthcare during the pandemic
Experiences of the impact on healthcare and treatments were commonly discussed, with both positive and negative aspects reported.
Move to remote interaction with health services mostly positive
Many participants described how their healthcare consultations had changed to telephone/video appointments during the pandemic, and this was often regarded as a more convenient alternative:
“there’s been a big push to change some things, like phone clinics and video clinics … it’s been brilliant. And my care is split over three different hospitals, so rather than spend 45 minutes each way on the Tube to get into my hospital, wait in a busy clinic and then get back … It’s so much easier to just be able to phone...” (female, 30–39, bowel condition).
“I have a routine discussion with the oncology unit at the hospital, which has been by telephone ever since I moved down here. I’ve had one face-to-face meeting with the oncologist and he said, well you have to have telephone routine checks, and I said that’s fine with me, I don’t have to drive over, park the car, hang around for an hour or two. So this actually works better …” (male, 70–79, cancer).
Although one participant felt it wasn’t as satisfactory and another talked about missing the reassurance normally gained from a physical assessment and having concerns that it was not as medically rigorous:
“my clinic appointments have been over the phone. The bit that I’ve missed out on is somebody physically checking my lymph nodes …” (female, 40–49, cancer).
Mixed views of attending healthcare settings in person
Participants described varying emotions regarding attending healthcare services during lockdown. Some felt that the precautions taken by healthcare professionals (wearing personal protective equipment, promoting hand-washing, triaging appointments) alleviated anxiety, and they felt safe and reassured:
“I felt okay about [going for a blood test], I know the GP surgery quite well and they’re all very friendly and competent as far as I can see … if there had been about 20 people in the waiting room, I wouldn’t have been too happy about that, but they’re actually managing the flow of people extremely well....” (male, 70–79, cancer).
Others described feeling anxious initially, however for those attending regularly, this anxiety diminished:
“The first time I went, I don’t know because the nurses have not been tested. And I thought I’m shielding at home and yet I’m coming here and you’re giving me treatment intravenously and you’ve not been tested and that didn’t sit right with me … But now I’m fine, I go every three weeks... It’s fine” (female, 50–59, cancer).
Some felt extremely anxious about catching COVID-19 during hospitalisation for their LTC, particularly if accident and emergency (A&E) admission was required, whilst others felt the risk of this was low:
“In my head, if I went to A&E and went into the hot side with Coronavirus, that’s just a death sentence” (male, 30–39, multiple conditions).
“I didn’t feel any anxiety about going into hospital because most hospitals are designated as red zones and green zones. Certainly, all the nurses etc. wore masks, gloves and all the rest of it. But I had excellent care and I wasn’t at any point worried that I would actually catch [COVID-19] in hospital” (female, 60–69, respiratory condition).
Some participants described evaluating the perceived seriousness of health problems they were experiencing versus the potential risk of catching COVID-19 in deciding whether to access healthcare services:
“the night I had the chest pain, it mentally went through well, I’ll give it another 10 minutes and see. If it hasn’t gone, I will go to hospital. So I wasn’t just going to sit there and think I’m going to put up with chest pain just because I might get COVID-19 if I go to hospital. I was sensible enough to realise that really, the more pressing thing’s getting what seemed to be a heart attack sorted than worrying about a theoretical risk of getting [COVID-19]” (female, 60–69, respiratory condition).
However, others reported real reluctance to engage with healthcare services. One described not attending an appointment at the hospital because of their concerns about the risk of contracting COVID-19, and another delayed help seeking for suspected cancer recurrence:
“I had possible signs of a resurgence of the cancer. I had a lump come up on my neck. And we were already in lockdown at that point … And so I put it off, of course, as we usually do, and seeing if it would go away. But two weeks later it was still there … And it was clear I had to do something because I was tearing myself apart with panic...” (female, 70–79, cancer in remission).
Postponement of non-essential treatments
Some participants had non-essential treatments or appointments postponed. Some were in agreement with this decision, while others experienced disappointment (despite understanding the necessity of it):
“I should have seen my neurologist in January … but that got cancelled. I contacted [the hospital] and got an answer phone, then I was told that the neurologist would be getting in touch and she never was …. A bit disappointed and I do feel like I think what I’ve got is a pretty serious condition, but it’s obviously regarded as not that important at the moment … but I can understand why” (male, 60–69, neurological condition).
“I was supposed to have a surgical review with a view to having surgery this year, but obviously that’s all stopped. The review was cancelled. Surgery will not be any time soon. It can wait, but it’s also something that’s disappointing. But I do understand that there will be a massive backlog now and there are many more urgent things that need sorting” (female, 40–49, respiratory condition).
Threat of disruption to cancer treatments created stress and anxiety
Participants undergoing cancer treatment spoke about the stress and anxiety caused by threat of disruption to treatment. One participant was undergoing chemotherapy with curative intent:
“There was a bit of stress at some point because … [the oncologist] was hinting, basically, that potentially they would have to cut my treatment short to a degree … I guess the consequence of that is that you increase the risk of things coming back and all that, so it wasn’t ideal. But 15 days later, when I went back for my next cycle, that was out of the window and things have improved in [the hospital]” (male, 30–39, cancer).
Another was receiving treatment for incurable cancer that was intended to limit cancer progression and prolong her life, and was relieved that her treatment was not affected:
“my treatment’s carried on, they were talking about cancelling it, but they didn’t … I was glad, because you never know. It’s under control at the minute, but I know things can change, so I was glad mine carried on.” (female, 50–59, cancer).
Anxiety created by uncertainty about the future
Whilst a number of participants recognised that the experience of living with a LTC may have somewhat prepared them to cope with uncertainty, they still described a number of issues specific to the pandemic that were challenging for mental health:
“[uncertainty’s] something that I wouldn’t say I’m an expert in dealing with, but I’m very experienced in dealing with it. But it doesn’t make it any easier. But it seems to be something I’ve had to deal with, at least on the back burner, all my adult life” (male, 50–59, diabetes).
Impact of pandemic on treatment access with progression of LTC
For some participants, the pandemic exacerbated their worries about future treatment, progression of their LTC, and ability to access healthcare in the future if their health deteriorated:
“there is the underlying anxiety, as well, about how will I be treated in the future?...The healthcare worry is obviously a lot more intense, because if I need to go back into treatment, I will have to be isolated to a much greater degree, and will be much more dangerous … it’s always been there, but [now] it’s an increased anxiety” (female, 50–59, cancer).
“healthcare is my main priority, that really worries me, that I’m not going to get the same level of treatment as I was getting before, because there won’t be sufficient money around, and a lot of services will be cut” (female, 50–59, cancer, autoimmune and respiratory conditions).
This worry seemed less pronounced in those with cancer, who emphasised that their main worries about the future were about the cancer, and the pandemic had not changed that:
“[cancer’s] always a worry, really. I think I’m very much of the opinion that it will come back at some point, and that’s kind of what the numbers show. I’m not particularly emotionally worried about that … that’s not changed because of this situation” (female, 40–49, cancer).
One participant, who was currently receiving cancer treatment, described how they tried not to look beyond completion of this:
“if I’ve got any worries about the future, in the ranking, cancer comes a clear first and the pandemic is some way behind that … I’ll need to process what it means to the future of me, in the future, once the treatment is gone” (male, 30–39, cancer).
Fear of restrictions being relaxed and plans to continue isolating
Many participants discussed anxiety around relaxation of guidelines and plans to continue shielding or isolating even if/when restrictions were lifted:
“Even now shops are opening and stuff. I’m too anxious to go out and about …. I’ll just keep monitoring what’s going on and make my own decision as to when I feel it’s safe for me to get back into the big world” (female, 50–59, neurological condition).
“And I personally feel that it will take a while before I would feel comfortable going out. So, regardless of what the government says, I will be preferring my own guidelines” (female, 60–69, cancer in remission, CVD).
However, participants undergoing active cancer treatment felt less concerned about relaxation of the lockdown, since their treatment meant they would have to isolate anyway:
“I’m not concerned so much, because … I’m going to be isolating for longer than everybody else, so when the country starts to reopen, I’m going to be here. And if there’s a second wave, I’m going to witness that from where I sit here. I’m not going to be part of the second wave” (male, 30–39, cancer).
Not having an end in sight
Despite some reporting they would electively remain in isolation after restrictions were relaxed, several participants mentioned that the uncertainty around how long the pandemic would last was particularly difficult:
“how long’s the virus going to be floating around for? How long have we got to take these precautions?...I can’t anticipate whether we’re talking weeks, months or a couple of years and the long-term effects are going to be floating around. The anxiety I’m sure will lessen but I think it’s going to be there for a good while” (female, 50–59, neurological condition).
Some described a sense of loss or grief in not knowing when (or if) social lives would return to normal:
“It’s fine for the moment, but, obviously if I think I’m never going to see the Royal Ballet again, I can get quite tearful. And it’s things like dancing, we do dance quite a lot … obviously we can dance together, but it’s not the same as going dancing, so yes. It’s a grieving for how quickly those things come back” (female, 50–59, cancer).
“it’s almost like a sense of mourning for the life that we’ve lost. Because it’s hard to see how it can ever go back to being quite what it was before … that grieves me a bit” (female, 70–79, cancer in remission).
Many participants also expressed that they felt that normal life would not resume until a vaccine had been found and placed their hopes for a return to normality on a successful vaccine:
“…. This has crippled the world and will continue to do so until a vaccine is found. That’s quite a daunting prospect on normality” (female, 40–49, respiratory condition).
“to me, the only thing that will stop this is a vaccine … that’s the real hope” (male, 50–59, CVD).
“I think the uncertainty of it and just not being sure how it’s going to end. And when they also say things like oh, we may never get a vaccine, for f**k sake, and then what? Do I never go out again? I think that’s it. Probably the worst bit” (female, 30–39, CVD and respiratory condition).
Acceptance most protective for mental health
Despite the challenges of uncertainty, many participants described that they had found trying to accept the situation as the most protective coping mechanism for their mental health:
“I guess it’s just a massive thing that’s outside anyone’s control, so you just have to adapt. You have to be very flexible and adapt to it” (male, 50–59, diabetes).
“what’s the point of railing against it? All you’re doing is making yourself upset. The situation is the situation … you’ve just got to accept that it will be what it will be and you make the best of it” (female, 70–79, neurological and musculoskeletal conditions).