Keeping well in a COVID-19 crisis: a qualitative study formulating the perspectives of mental health service users and carers

Figures & data

Table 1. Framework of categories and emerging themes.

Framework category	Emerging themes	Service users (n = 18)	Carers (n = 5)	Both (n = 8)
Emotional responses	Fear	13 (72%)	3 (60%)	6 (75%)
	Anger	11 (61%)	3 (60%)	5 (63%)
	Sadness	14 (78%)	3 (60%)	6 (75%)
	Boredom	5 (28%)	0 (0%)	2 (25%)
	Disgust	1 (6%)	0 (0%)	0 (0%)
	Guilt	4 (22%)	0 (0%)	4 (50%)
	Surprise	1 (6%)	0 (0%)	1 (13%)
	Happiness	4 (22%)	3 (60%)	2 (25%)
	Calm	4 (22%)	2 (40%)	3 (38%)
Thoughts	Appraisals of their life situation	17 (94%)	5 (100%)	8 (100%)
	Appraisals of their relationships with others	16 (89%)	4 (80%)	8 (100%)
	Appraisals of the virus	18 (100%)	5 (100%)	8 (100%)
	Appraisals of organisations and services	18 (100%)	4 (80%)	8 (100%)
	Appraisals of themselves	18 (100%)	5 (100%)	8 (100%)
	Cognitive coping strategies	17 (94%)	5 (100%)	7 (88%)
Behaviours	Following recommended behaviours	17 (94%)	4 (80%)	8 (100%)
	Health behaviours	18 (100%)	3 (60%)	8 (100%)
	Activities: leisure activities	15 (83%)	5 (100%)	6 (75%)
	Activities: home-focused activities	9 (50%)	3 (60%)	4 (50%)
	Activities: technology-related activities	17 (94%)	4 (80%)	8 (100%)
	Social behaviours	17 (94%)	5 (100%)	8 (100%)
	Approaches to the news	17 (94%)	4 (80%)	6 (75%)
	Religion and spirituality	1 (6%)	0 (0%)	2 (25%)
	Work and volunteering	4 (22%)	1 (20%)	5 (63%)
	Time management behaviours	16 (89%)	5 (100%)	8 (100%)
	Not much change	4 (22%)	1 (20%)	2 (25%)
Other contextual categories	Being in a high-risk group	3 (17%)	1 (20%)	5 (63%)
	No change to life	14 (78%)	1 (20%)	3 (38%)

Table 2. Illustrative quotes for the participants interviewed for all dimensions and themes, referenced throughout the main text.

Dimension	Reference	Themes	Illustrative quotes
Emotional responses	1.1	Fear	“So on one hand I am glad the outside world has stopped for now, but on the other I am fearful of losing any sort of coping skills that I had.” (MM1_female service user and carer)
	1.2	Anger	“It kind of makes you feel I suppose frustrated, that feeling like you’re just trying to keep your days down, so you’re almost, like, wasting time, waiting for it to pass – linking back to not having anything to make you feel productive. Like you feel like life’s passing in a sense, you’re just trying to sit it out, and not go anywhere for that time.” (DM2_male carer)
	1.3	Sadness	“I feel like sometimes I do get worried about, like, I don't know maybe… I'm not worried about it, but sometimes I just get really sad… Uh, like, I'll just be on the – on the phone to my friend, to my, to my girlfriend or my friends and I'll just be like, I'm feeling quite sad right now, I'm not sure why.” (CO5_male service user and carer)
	1.4	Guilt	“I'm trying to not feel guilty about anything that's not going well, you know, so I'm I'm struggling with doing my homework at the moment and I ended up missing the deadline because I was distracted reading the news, 'cause when all this coronavirus stuff happened, you want to know all you can about it. I spent like 10 days researching it all and just getting up to speed on it and sharing information with my family. Whereas what I should have been doing was my homework.” (ELW7_female service user and carer)
	1.5	Boredom	“It's kind of like mind-numbing boredom. Like it doesn’t end.” (DM8_non-binary service user)
	1.6	Disgust	“I think I'd probably like to see a bit more of the police around, I suppose, just keeping an eye on people – you don't see, you still don't see very much of them, probably because there aren't enough of them. Nevertheless you, you, you see them around, but I haven't seen any any any police enforcing anything so far, which is a bit bit upsetting because there there have been times when I would have liked somebody to have been there to have actually said something and just tell them not to be so damn stupid.” (DM7_male service user)
	1.7	Surprise	“I'm still quite horrified when you look at the stories of, you know, people sunbathing. I went last week – the end of the first week, I went to my local park and, uh, it was just like a normal day: groups of people sitting together, walking together, I was actually flabbergasted.” (DM6_male service user)
	1.8	Happiness	“I feel quite happy. I mean I, I do quite enjoy my own company and stay in the house anyway so it's not. It's not a torture to me.” (ELW4_male carer)
	1.9	Calm	“There's been a gradual slowdown, settling into a relaxing rhythm of being, sleeping, eating, exercise, hobbies, spring cleaning, gardening. Um, so it's been relaxing, it’s been a relief in a way just to get off the treadmill of voluntary work and things that I do – my outdoor life.” (CO3_females service user)
Thoughts	2.1	New sources of worry	“I was really frightened all time about a benefits etc of losing me benefit 'cause you know always continuous being accessed. And now I'm frightened all the hospitals appointment I have got are going to be shelved. And I am worried I'm just gonna be cut off and left with no income.” (MM1_female service user and carer)
	2.2	Managing health better	“I’m resting a lot, so that helps my mood and, so yes, I’m looking after myself a bit more, instead of having an active life all the time.” (DM4_female service user)
	2.3	Strained relationships	“I live with my sisters and my mom and my dad, and when I get frustrated I will get very short tempered. So being at home and being like, stuck, in like, this bubble sometimes gets me annoyed.” (DM1_female service user)
	2.4	Others not following the rules	“Some people just don’t follow the guidelines because they think they’ll get away with it or it will never happen to them.” (DM4_female service user).
	2.5	Worse than past viruses	“Initially I didn’t feel the panic, and then it was only two they were putting in like procedures, like, social distancing, and more protective equipment and when they were talking about lockdown I thought ‘OK yeah this is getting serious’, and then when I started seeing people dying and it was going up and up and up each day and doubling and then we were on lockdown and I was actually thinking: ‘right? This is definitely very serious and this is not just the flu. This is something more.” (DM3_female service user and carer)
	2.6	No serious than past viruses	“I think it is very severe very. I think it's very serious. Um, because of how contagious it is, but I don't think it's any different from other, like SARS and swine flu and you know the general flu. It's more contagious than that, but I I personally don't. I I think it's been blown blown up too much uhm, even though it is very, very serious and a lot of people are dying.” (SS2_female service user)
	2.7	Challenge of determining accurate information	“Um, I think I've, you know, I've-I've seen there’s always, so very sensationalistic, um reporting in the media. You know, including from newspapers you know that both – both, you know, strike both, you know in terms of overhyping the risk and also underestimating the risk. I mean, I'm – I'm lucky because I can, you know, I know where to look. You know the BMJ have, you know, you know, are doing a really good range of features on-on the Coronavirus and COVID-19, so I know-I know where I can find reliable sources of information.” (CO1_female service user)
	2.8	Response of services; inequalities	“I think that this is especially hard on people from minority communities right now. We don't have equal access to healthcare anyway as it is. We’re not believed as often as it is or our symptoms aren't taken seriously, seriously enough as it is on a general scale so it's a scary time.” (JE3_trans male service user and carer)
	2.9	Services are doing their best	“Most, from what I've experienced, most mental health services are doing a really great job. And, uh, they're going above and beyond. Particularly the NHS ones, and particularly [NHS Foundation Trust], which is the one that I'm affiliated with. So like I know, as a patient of theirs. I get loads of support through social media. When I say social media, Twitter uhm. And like. Yeah, they’re coming up with sort of new strategies and or just need papers, new articles, publishing new research, and that's all really helpful to me.” (SS2_female service user)
	2.10	Resilience	“I don't think you can generalise, but sort of making the comparison with other, um, traumatic situations and if you put into context it’s actually not that bad. And I wonder if, because I've heard it from other service users as well, if it helps us cope with the situation, at least in the short-term because we have encountered similar or worse before. Compared to other people who may have never encountered any periods of adversity in their lives.” (CO2_female service user)
	2.11	Acceptance	“I haven’t had any episodes where I’ve been having panic attacks or very stressful… but I think it’s because I’ve kind of adapted to, like ‘this is how it is so far, and there’s nothing I can kind of do about it other than just relax’.” (DM3_female service user and carer)
	2.12	Collectivism	“the weirdest thing about all of this is that we are all in a kinda levelling position. You know this is, this level of anxiety is what most of us service users go through all the time … between different nations, between different religions. Professionals and service users, you name it. We are all the same at the moment. In a way that is comforting.” (ELW7_female service user and carer)
	2.13	Determination	“I think we’re in this for the long haul, in which case I ain't got no choice but to somehow get through it, which kind of describes how I feel about my voices anyway – I've had no choice, but I have to keep going and so I think with the current situation, well this is where I am, I have no choice.” (DM6_male service user)
	2.14	Optimism	“I'm an optimist. I always try and look on the bright side, which is sometimes challenging. Er, so I'm not sitting here panicking.” (DM6_male service user)
	2.15	Pragmatism/stoicism	“you sort of just change gear somehow. I mean, you know, you don't go out, you can't socialise and ask other people and chat with other people. So you change gear and get on with it by yourself really more than you would have previously. If that makes sense.” (CO3_female service user)
	2.16	Scepticism	“I have a science background so I draw my own – I do my own research and I don't buy into the fearmongering or whatever it might be on any given day. You know. So – I'm not easily influenced by social media.” (CO2_female service user)
	2.17	Self-compassion	“I'm trying to not feel guilty about anything that's not going well, you know, so I'm, I'm struggling with doing my homework at the moment and I ended up missing the deadline because I was distracted reading the news.” (ELW7_female service user and carer)
	2.18	Remembering the past	“I had a happy childhood, normal childhood, so that is a well of, um, well-being for me. I can always go back to knowing the good times in the past when I was young and-and that is a great reserve to draw on because I knew, you know, I was happy then and all was well and safe. So that helps – if you have a good frame of mind it helps you get through tough times yeah, yeah.” (CO3_female service user)
	2.19	Living in the present	“I'm trying to take one day at a time. Like I'm not looking very far ahead. I'm just trying to keep my health tiptop, um, practice mindfulness and um, no I don't look very far ahead. I know it could well be a long drawn out thing and it could get much worse, but I can't go there. I don't go there.” (CO3_female service user)
	2.20	Imagining the future	“I'm missing some activities that I went to before, like going to church, but at the same time I'm kind of I don’t know… I don’t think our government in lockdown for very long so, I know that I, I expect that I will have the option go to church in about a month.” (ELW7_female service user and carer)
	2.21	Mental distraction	“I guess I'm just trying to distract myself with other stuff instead of, you know, just thinking, like, I don't really want to think about myself, I actually wanna get my mind to do like something else interesting, to distract myself.” (ELW6_female service user)
	2.22	Psychological distancing/detachment	“And the one thing I tried, I tried to, to a certain extent if things aren't going to that well I try and step away and think well it's not going well here, but I'm not gonna get dragged in and get upset. I'm good. I detach myself from it.” (ELW4_male carer)
	2.23	Finding rules to abide by	“I'm someone who likes rules. It gives me a sense of security of some sort. Then I know what I'm supposed to be doing.” (CO2_female service user)
	2.24	Self-reflection and insight	“I very much tend to reflect, and if I think, well it's really not working here and the input I'm giving isn't necessarily working, I'm going to step back. Uh, that that's what that's what I've been kind of thinking about a lot, and reflecting.” (ELW4_male carer)
	2.25	Managing expectations	“they [my coping mechanisms] are going to have to be very very good. You know, it's never gonna be as good as what it was before, because I could go out, I could see people, I could talk to people, and spend time with other people. But this is just about getting through. It's not gonna be as good, but it's got to be good enough.” (DM6_male service user)
	2.26	Perspective taking	“I understand that it-it's a very contagious disease and people are in their thousands obviously are dying from it, but I try to put it into some sort of perspective that there are also thousands of people that don't get it. And there are also thousands of people that get it and recover, and have it very mildly.” (CO4_female service user)
Behaviours	3.1	Precautionary behaviours: handwashing, gloves	“we go to the shop probably every other day – our local shop. Both my partner and I, and we put on gloves when we go. We wash things down when we get home, we wash our hands, um, so that is the only contact we have with people, is going to the shops.” (CO4_female service user)
	3.2	Challenging eating behaviours	“I have an eating disorder so it’s quite difficult to be at home a lot just with food around and starting to have some of those like difficult thoughts and trying to keep restricting behaviours from happening again. And also the like mass panic buying so even if I do need to go and buy foods then I'm limited in what I can buy, which causes me even more anxiety because I buy the same things and I like to know that I'm buying the same things. So when I have to change that, it's really stressful.” (JE3_trans male service user and carer)
	3.3	Disrupted activities	“So my coping strategies: I mean one, I’d been going to the gym the last couple years and found that that’s quite important in terms of, you know, just trying to maintain my energy levels because so much emotional mental energy goes into just dealing with the voices and I have sleep problems as well … One of the other things I do is listen to music a lot and play the guitar. And I was going to place called [NAME], which is an Art Centre for people with mental health problems. And they have a guitar group every Wednesday afternoon, and I would go to that and I'd play guitar with other people, so I lost that. … I’m [also] an amateur photographer, and I would go out and take pictures sometimes, probably not as much as I should, 'cause most of the time I’m too tired, but I used to enjoy doing that as well … So all of that has just gone out the window.” (DM6_Male service user)
	3.4	Keeping busy doing household chores	“I tidied up my room because I felt like if I tidy my room and my environment is clean, that I’m in, it makes me feel better.” (DM3_female service user and carer)
	3.5	Mobile apps	“I’ve started using this wellbeing app called Thrive. Um, normally it’s something like a doctor would refer you to but I was googling wellbeing apps and found it so I just contacted them and they gave me a login ID. So I started using that and that just kind of teaches you a bit about CBT and then it has like other relaxation techniques, activities and things like that. So even as something to pass the time.” (DM5_female service user)
	3.6	Having personal space; good communication at home	“in the family, we are, we’re, we’re generally a close family but obviously we have lots of arguments but we’re coping quite well with keeping that separate. We hardly manage to go out on a week’s holiday without arguing, we haven’t had a proper argument since this started. I think yeah, we're just learning to like keep each other, like keep our distance. Like we all have things that we're doing, like my dad's doing a lot of work, my mum’s kind of a bit ill so she’s not doing as much, my sister spending all her time face timing her friends and so we’re also sort of keeping separate which helps. And then we've set up a bit of a rota for the chores and like cooking dinner and washing up and stuff which is helping, yeah.” (JE1_female service user)
	3.7	Religion and spirituality	“I'm still involved in a a prayer group, uh, which is something that I've been involved in for about a year. So that’s now meeting online and before you know, we met in someone's house before, so that's nice 'cause it it still gives me that feeling of being a part of the group.” (ELW7_female service user and carer)
	3.8	Work	“it's a big deal because my work is a big way – is a big part of me, you know, feeling connected and feeling I have purpose in my life.” (CO1_female service user)
	3.9	Change in routine	“I think, one doesn't appreciate just how reliant you are on routines until you can't do them anymore, and then you realize that actually they’re there and all the time they were there and you didn't really realize. So yes, you have to replace those, yes.” (DM7_male service user)
	3.10	Taking things day by day	“I'm just, you know, focusing on where I am at this moment in time, then everything is kind of OK. I don't know how long lockdown will go on.” (ELW7_ female service user and carer)
	3.11	Limiting news consumption	“I want to keep up to date but I don’t, um, it distresses me to hear all the ‘what ifs’ and all the prognoses and you know it’s all in the future, isn’t it? Nobody really knows.” (CO3_female service user)
	3.12	Not much change	“Well, I used to be quite isolated, so I'm not one of these people who is close to people around people joining in things with groups of people. So, in that respect, it's not something that I I used to, so I don't. You know, it's it's not difficult for me in that respect.” (MM1_female service user and carer)
Other contextual information	4.1	High risk groups; additional strain of being a carer	“because I'm a carer and my daughter relies on me to some extent, emotionally, particularly not practically so much, but the thought of me not being here suddenly, you know, would be quite distressing. So that is a that is quite a big worry for older carers, I'd say.” (SS4_female service user and carer)
	4.2	No change	“I guess it doesn't-doesn't make much of a difference to me like I said earlier, which is strange. I guess for some people they were worried, I mean, my care-coordinator or whoever, I think they were worried it would exacerbate my OCD symptoms like exponentially. But I think gosh, it's hard to generalise, but I think to some extent I’m less worried than other people maybe because to me it's second nature. You know I'm so used to avoid touching anything and being very, very aware of what I touch. You know, if I touch my – or when I wash my hands before eating or touching my face or whatever, so I kind of trust my own routine in that sense.” (CO2_female service user)

Figure 1. Examples of thoughts as coping strategies.