Summary of resident characteristics

Resident participants had several primary health care needs. These included multiple sclerosis, asthma, dementia, Parkinson’s, chronic obstructive pulmonary disease, diabetes, reduction in mobility, arthritis, cancer and heart disease.

Summary of family members’ characteristics

Learning about the pandemic and the new rules

Care home residents living in CHs in Spring 2020 reported first becoming aware of the COVID-19 pandemic through the media (newspapers, television and radio), and from CH staff in March 2020. Some residents noticed signs of increased infection control measures such as mask-wearing by staff and reduced visiting; this was their first indication that the pandemic had the potential to affect their lives. Interestingly, none of the interviewed residents mentioned hearing about the pandemic from family members, though they indeed discussed it with them as the pandemic progressed. As described elsewhere, CHs introduced a raft of measures including restrictions on visiting and other activities, social distancing within the CH and isolation for suspected or confirmed COVID-19 cases. One resident explained how events unfolded at her CH:

‘[T]he management came and told us that we were, it was a virus, and then we were, oh dear, then we, told us about coronavirus, and then they shut the home, closed the home down, and to make sure that we were all safe, and they kept us informed about everything and … I watched the TV and it said, gave me more information …. They told us that there were going to be no visitors because of the pandemic, and they were going to keep us as safe as they could, and I think everybody accepted the fact that we couldn’t have visitors, because if you had visitors they might have brought the pandemic into the home …’.

(Resident 3)

Another resident experienced the sudden introduction of restrictions: her husband was already at the home with her when staff informed them that visiting was being stopped altogether and that he would have to leave. As she described it:

‘Well what happened here was that my husband used to come in and visit nearly every afternoon and he was here one afternoon and one of the care staff came in and said, would he hang on because there was a man who wants to come and visit his relation and they’d told him that he couldn’t and they wanted my husband to wait until this man was safely out of the way or he’d left and that was it really … But obviously when [my husband] came in they hadn’t cited that they were going to restrict it so much. Whether that came, I don’t know whether they suddenly got an instruction from head office, or why, but it was very sudden’.

(Resident 5)

A resident at another study site described how she first heard of COVID-19 when she returned to the CH having been hospitalised with the disease. She was told on her return that the virus had in fact infected her and at that point began to ask questions about it.

We asked residents whether they felt they knew enough about the pandemic and whether they felt confident asking for more information from CH staff. This varied quite considerably. Most residents said that communication from the CH had been good throughout, and they felt informed. Some were hungry for information and found care staff responses to their questions unsatisfactory, while at the same time acknowledging that knowledge and information about the virus – especially in Spring 2020 – were generally very poor and that CH staff did not know any more than they did. Conversely, one resident said that she did not want to know more:

‘Erm … well, to be perfectly honest with you, I don’t want to know too much because too much knowledge is a bad thing at times’.

(Resident 2)

Most residents told us that the measures and restrictions introduced at the CH were also explained well by staff. Some residents, however, felt that staff were not always willing to discuss the measures as thoroughly as they would have liked and complained that communication had been poor. One resident described how he felt infantilised:

‘I don’t like being talked to as a child … Quite a lot of the matters were done in a military fashion … There could be a lot more handling of people and explaining rather than just saying “you sit there, you sit there”, etc. … [The staff] would say as little as they need, we need to know, and sometimes they didn’t know, do they? “You are not going through that door” … “You can’t go downstairs” … So there we go’.

(Resident 10)

While this resident was clearly dissatisfied at how new zoning and social distancing rules were communicated in his CH, he speculated that staff did not always know why specific rules were in place, echoing other respondents who recognised that knowledge about the virus was incomplete. Though he was asking for more clarity, he trusted CH staff in their execution of the rules:

‘I didn’t want to be informed in detail, I don’t want a study of the rules, I want it pointed out to me and made clear. So no, I didn’t question it really. I accept what they say as being truthful and flexible and best for the job …’.

(Resident 10)

However, the same resident also accepted that there were limits to care workers’ abilities to communicate rules fully every time:

‘Yeah, well, they can’t stop and explain everything and reason with everybody, they’ll never get anywhere’.

(Resident 10)

This flexibility and trust on the part of residents was part of a broader attitude towards the pandemic and the consequent changes to their lives. This attitude was characterised by resignation, stoicism and solidarity with one another, with staff and with those outside the CH. One resident summed up this view:

‘Well, I suppose it’s for the best and for our best as well and everyone else’s, so you automatically accept, don’t you? What they say and what you, you know, supposed to do, yes. I don’t think it’s been really terrible or anything …’.

(Resident 6)

Family members were also struck by this attitude, with residents being described as from a generation who are ‘resilient’, ‘stoic and accepting’. One family member we spoke to relayed what his mother had told him:

‘“It’s worse than the war, you know, worse than the war,” she says, “tell you what, got through the war, we’ll get through this”’.

(Family Member 13)

One resident reflected on the appropriateness of the measures and described how she had discussed it with her fellow residents:

‘I think it was right, yes, and I think it was right in us being treated the way we were in the fact that we couldn’t go out and no-one could [come] in … but that’s the way you keep the thing down isn’t it, surely. But everyone was, I think everyone was okay about it, yeah. We accepted it, the people, or the residents that I spoke to …. When I asked them how they felt about it, they just accepted it, they seemed, but that was the right thing to do’.

(Resident 13)

Another resident told us that while the restrictions had affected her mental health, she had accepted the current situation, understanding the rationale for the measures, and hoping for better times in the future:

‘Yes, but I have felt a bit down, but you’ve just got to accept what’s happening and carry on, and as I say hopefully, we’ll have the ultimate goal that we’ll, you know, be able to be going out again, so I’ve just accepted it, like a lot of other people have had to’.

(Resident 3)

One’s own safety and the safety of others

Care home residents told us they felt safe – and had felt safe – during the different phases of the pandemic. This was partly due to their trust in the staff who cared for them during this time. One resident who contracted COVID-19 described her feelings of safety thus:

‘[F]unnily enough I’ve never been really frightened you know. You’d think I’d be frightened but I’ve never really been frightened of it because I thought to myself “I’m in a home here, I’m in a care home, I’m protected by all the care people” … and so it never really frightened me. I think had I been outside and had I lived in a normal house and stuff, I might have been a bit frightened. But I thought “I’m so well protected here”. I was surprised when I heard I’d got it to be quite honest with you’.

(Resident 14)

She attributed her recovery from the illness to the fact of living in a CH:

‘I think if I’d been in a house I wouldn’t have got rid of the virus. I think because I’ve been in a care home with all the carers looking after me and everything it’s helped protect me against any further viruses and I think that’s what’s helped me and I feel that if I’d been in my own house I wouldn’t have got the protection that I’ve been getting in the care home’.

(Resident 14)

One CH resident – in common with several other residents already quoted above – highlighted the trade-off between safety and the negative effect of restrictions, which had seen him forced to give up ‘privileges’ such as going on CH-organised excursions:

‘Yeah. For myself we’ve been kept safe all the time. I’m not complaining about the safeness. We’ve been very good, very good. Kept very safe, you know, very safe. But we haven’t been able to see, give up some privileges for’.

(Resident 4)

Another resident observed that while she certainly felt safe, she also felt removed from the reality of life outside the CH. In her words, she felt almost ‘too safe’:

‘Well yes, I do feel safe. I mean, you know …. In fact, you almost feel too safe, because you get quite gung-ho. I mean you do lose contact … you do obviously get a bit distanced from what’s going on, and you begin to think, well you know, there’s nothing that’s going to [pause] impinge on what you’re, you know, your state of health is, not the sort [pause] it’s not going have any adverse effects on you personally’.

(Resident 5)

Family members also reported their belief that residents were ‘cocooned and protected’ from the ways people outside the CH were experiencing the pandemic. This was partly to do with residents’ different cognitive abilities, which we explore further below. One family respondent described her loved-one’s attitude thus:

‘ [T]he pandemic is sort of secondary to her life, which is great’.

(Family Member 8)

Another resident explained that though her son was focused on her welfare, reassuring her that the CH was a safe place, she nevertheless worried about her family’s safety outside the CH. For her, the measures that she regarded as keeping her safe in the CH were a part of what would also protect those outside the CH. In such a way, she drew connections between her experiences and those of her children, and this sense of solidarity appeared to give her comfort:

‘But, if I say anything to my son, he goes, “Mum, you’re alright where you are, don’t worry”, but I do worry about my children, you know, which, yes, I think, every mother does, don’t they? …. Well, you’ve got to take it [the measures] and it’s for our safety, so you’ve got to put up with things like that because at the end of the day it’s for all our safety. And I want my kids kept safe as well as myself, so they do everything that I would do’.

(Resident 2)

Experiences of life in the care home

While the experiences of safety and attitudes of solidarity discussed above were widespread among the residents we spoke to, their reflections on changed aspects of their everyday lives in the CH during the pandemic – and of the impact of these changes on them – varied greatly. This variation was due to how CH residents used or imagined CH space – and the relationships within it – in the time before the pandemic. This was affected by residents’ level of mobility, health and desire for sociability within or outside the CH. Residents also talked about the longer-term changes to their living arrangements, relationships, health, sense of safety and restriction brought about by the very fact of living in a CH. The stories they tell of the effects of the pandemic-related restrictions are inextricably linked to a broader set of changes experienced by these older people in the latter years of their lives.

Understanding the role of gratitude towards the end of life

We have described how residents experienced measures and restrictions in their CHs and the effects such restrictions had on their mental health and their ability to maintain social relations. As we showed, these varied according to how residents understand the place of the CH in their lives and their level of mobility and general health. We also explored how residents expressed a sense of solidarity with each other, CH staff, family and society more broadly. Residents also expressed gratitude for the care they received from CH staff during the period of restrictions, recognising that care workers had performed services such as hairdressing, entertaining and nail-cutting that external professionals would ordinarily do. This gratitude was linked to the feelings of safety residents described and which we reported above.

There was also a broader sense of gratitude that CH residents expressed in their interviews with us that was also associated with safety and well-being beyond the pandemic. Residents sometimes described how they were thankful for having survived for as many years as they had. One resident explained, for instance, that she owed her present state of health and well-being to the care she received from her care workers:

‘To be perfectly honest, I didn’t think I would last this long, and four years later, owing to these girls and this staff, I am still here four years later. And I couldn’t feel better … I didn’t think I’d live this long, nowhere near, you know. And, when I first come in here, I thought, well, that’s it, you know, the end is nigh. But it’s taking a long time coming’.

(Resident 2)

We suggest that a sentiment such as this needs to be considered to understand the experience of restrictions for some CH residents. It reminds us that the perspective of those who are conscious of being in the final years of their life may have different understandings of ‘restrictions’ to people in other situations. In this example, the resident here seems to be saying that the pandemic and its associated restrictions ought to be put in the context of her unexpectedly long life, given to her by the CH; as such, the restrictions do not dominate her perspective. This point is made even more strongly by the experiences of another resident who was approaching the end of his life. He described how he and his wife lived in the CH and had separate rooms due to their different care needs. Despite being in the same home – and in adjoining rooms – they had not been allowed to see one another while restrictions remained in place: both were regarded as extremely vulnerable, and his wife had significant cognitive impairment. They communicated through video calls. His health deteriorated over the pandemic period and he was admitted to the hospital to treat a leg infection. Concerned that he would die in hospital, he wanted to return to the CH so that his wife could see him in that setting. The CH organised this for which he was grateful. While this resident talked to us about the effect of the restrictions on the comfort of visitors and the difficulty he had in hearing them at a distance, his main concern was ensuring he ‘showed a decent burial’ to his wife. While the restrictions on not seeing his wife might seem draconian, he did not think so; in fact, given that he had been able to return to the CH from the hospital and was still alive, he told us:

‘I just thank God I’m able to have some contact with her’.

(Resident 12)

Acceptance and stress: balancing competing desires

Several family members emphasised that they had accepted the need for restrictions on visiting as essential to keeping their family members safe from COVID-19. These restrictions ranged over time from a total ban on outsiders to visiting with enhanced measures such as testing, social distancing, mask-wearing, specified visiting areas, and time and visitor limits. Relatives were concerned not only about the safety of their family members but also of other residents. One relative described how the absence of COVID-19 in the CH demonstrated the rightness of the decision to restrict visiting severely:

‘They’ve obviously restricted the visiting, which I find difficult, but I understand the reason why. They’ve been COVID free and if that’s what you’ve got to do to ensure it then … I must admit, I’m glad that they did it, do you know what I mean, although it wasn’t the best option for me or me mum. In the long run obviously, she’s not got COVID and nobody in that care home has, so I’d say they’ve done a good job’.

(Family Member 6)

However, while family members accepted the restrictions, many told us that they were not always sure how or why decisions about guidance and implementation were made. As one relative said:

‘A question I would ask … is to what extent the restrictions are governed by guidance as against law, because we, outside the home we have legal restrictions on what we can do as well as the “hands, face, space” type general things. So I’m not, I suppose one thing, I’m not quite clear is to how much flexibility the home managers have in terms of what is mandatory. I haven’t asked the question so I don’t know the answer but it’s not quite clear to me what ultimately governs their protocols and practices’.

(Family Member 5)

This sense of not knowing how or why guidance was being changed or whether CHs had flexibility in implementing guidance added to the feelings of anxiety and calculating risk that pervaded relatives’ lives during 2020–21. Some family members described the additional work and thought that went into restricting their own social lives outside the CH to minimise the chances of transmission when visiting residents. One relative told us how these concerns affected him:

‘… there’s always that concern, mortifying that you would pass on something, how could you sort of easily live with yourself thinking, “oh did I do that, was that me?”, you know? So yeah, I’m not, obviously that goes for a lot of people, but there is that additional level of stress and strain on top, stress and strain, worry, concern, on top of having a loved one in a care home in the first instance, yeah, who’s elderly with dementia. So we’ve got that level, and then you’ve got all these other complexities on top of that now.’

(Family Member 14)

Several family members spoke of the moral dilemma of balancing the risk of transmission of COVID-19 to CH residents and staff with the desire to see residents in person:

‘I know we have tests, we come in with the swab tests, etc., etc., but I wouldn’t want to risk Mum’s health, or of course what we all have to think about, what we should all be thinking about is if the virus gets back inside the care home you’re putting all of the residents, you know, in jeopardy and of course the carers that look after Mum’.

(Family Member 13)

These stresses and dilemmas were also bound up with relatives’ fear that – in the absence of visiting – their family member would die in the CH before restrictions were lifted allowing them to see each other in person. Several family members described how phone calls to and from the CH – while welcome forms of communication – became a particular source of anxiety:

‘… it’s just really hard, it’s hard because my way of life now, and my way of thinking have totally changed, and both me and my sister we can’t relax. Each day we will ring. One of us decides the night before, right, who’s ringing about Mum today, so we ring every day, we try at 11, half past 11, and we can’t relax until we know that we are told Mum’s okay … and then we relax for the rest of the day. But if our phone goes, straightaway we panic, and then when you see [CH name number] [laughs] you go into an even bigger panic, to the point now that [CH name staff] when I answer the phone will go, “It’s fine, your mum’s okay,” just because we’re so scared that we’re going to lose her, and before we get to see her, so it’s literally changed all of our well-being, and it’s affected us’.

(Family Member 3)

The importance of ‘being there’: families as carers

We described for residents above how the extent to which restrictions affected people was connected to their different experiences of CHs as bases of valued social relations. This is also held for family members. Anxieties and stress were also enhanced for those family members who had been centrally involved in the resident’s life before the pandemic and who contributed to the CH community, regarding themselves as part of the ‘care home family’. Not being allowed to visit was like missing a part of one’s life:

‘I found it very difficult because prior to the COVID epidemic starting, I was here, in the home, several times a week, interacting with the staff, interacting with the people that [Name of resident] lives with … and so I felt part of the [Name of CH] family. I came to help, I run the poetry sessions that they had. And [I] also came to the regular quiz sessions that they have and used the café a lot. The whole family used to come on Sunday, that’s myself, my two sons, my husband, my sister, and we all sat down in the bistro and played dominoes and, you know, had a coffee and just had a sort of, you know, a relaxed family gathering, and that was sort of once a week, once a fortnight. So we were able to have regular get-togethers. And so going from that to nothing except a phone call made it very difficult’.

(Family Member 12)

Another element of variability among families was the length of time their relative had been already resident in the CH before the pandemic, and its associated restrictions began. For families whose loved ones had moved into the CH during the pandemic (and were therefore trying to adjust to new forms of caring), there were additional feelings of powerlessness about having to ‘step away’ from the role as carer they had hitherto occupied. There was anger and heartbreak of not being able to be present at such a significant transition in their older relative’s life. One daughter described how her mother had been receiving intermediate care and had been relatively independent but had now developed vascular dementia. Her mother was non-weight bearing and needed different types of care at the CH. She told us:

‘Throw into the mix that we couldn’t get anywhere near her, and it was heart-breaking … we were upset, we were angry at the situation, angry that we felt we’d missed Mum, if we’re being brutally honest, but we were angry that we couldn’t then get in there and comfort her.. And yeah, it was just that we’ve just felt helpless because we had to sit back and watch Mum go through a really traumatic time … and it was just heart-breaking that we just couldn’t get in there and just give her a big hug, and hold her hand, which is all that she actually wanted from us to be honest’.

(Family Member 3)

Some family members reported that they believed the pandemic restrictions, which did not allow them to support residents’ care, had exacerbated their loved-one’s physical health decline. For instance, families often kept residents to their prescribed exercise regimens and encouraged regular walking. One relative said:

‘I think if it wasn’t for a pandemic, I think my mum would be walking now because we would have pushed her every step of the way’.

(Family Member 1)

Another reported the following:

‘Well, when I was coming in every day I made him do his exercises and stood over him and helped him, but without me actually standing over him his motivation is not very high, so he’s not been doing them’.

(Family Member 7)

Gratitude to care home staff

There were multiple expressions of gratitude from family members to CH providers, managers and staff for the additional COVID-19-related work, coping with exceptional busyness and challenges of keeping residents and staff free from infection. Families were confident that CHs were safer than other places and that, in the absence of physical visiting, they could reassure themselves that their loved ones were well-treated and happy. One relative told us:

‘my mum every time I see her when she’s alert and not dipping her biscuits in her coffee, she looks well cared for, she looks happy, she looks content, I watched the body language with my mum, and either [name of carer] or [name of carer], or any of the other carers that are there on FaceTime, and she’s well at ease, and she loves them just as much as they love her, and that means the world to us as a family, so they’ve been really, really supportive’.

(Family Member 3)

This was especially the case for those families with relatives who had more complex needs such as Alzheimer’s or other types of dementia. One family relayed how her resident relative described the care she received:

‘… and she’s told me that if she’s in pain at night one of the nurses will sit on the bed and hold her hand and I just think that’s amazing. Yeah. And that then she describes the water fairy who comes in the middle of night to give her a glass of water because she might wake up with a dry mouth’.

(Family Member 8)

For some family members, there was a recognition that residents were forming new relationships with care workers in the absence of family. The families spoke of having to rely on staff to ‘do their job’ and residents having a new reality because of the measures to prevent and control the transmission of COVID-19. While this brought comfort and reassurance to families, for some this was coupled with sadness that the resident was forgetting them:

‘I’ll probably get a bit upset now, but I saw her in December [gets upset] and she doesn’t know who we are, [pause]. The only thing I would say is how we’ve come to terms with it, the only thing with coming to terms with it is she is happy, she isn’t distressed, she is well cared for, and she’s loved here, she really is [gets upset], so when I see her and she’s laughing and she’s taking part in stuff, I just think, do you know what, things could be a lot worse … It is that bit about not knowing who we are, that’s the hardest bit to cope with’.

(Family Member 1).

Some CHs recognised the risks of residents and families losing touch, especially for residents with conditions of progressive cognitive decline. One family member reported that the CH assembled a memory box as a way of activating connection in the absence of relatives’ physical presence:

‘the home have been really good, they asked us for lots of photographs, memorabilia and stuff like that, so I did a whole box, labelled up all the names of who the family members were, and where it was, and holidays that she used to go on, so they’ve been able to use that box to do a lot of the dementia support, with her, to keep her brain going’.

(Family Member 1)

Missing physical contact and bending the rules

The loss of physical contact with residents was described by several family members when they spoke about the impact of visiting restrictions on their well-being. Not being permitted to have physical contact with residents caused distress, with families sharing the impact on them of not being able to hug and kiss residents:

‘So again, all you want to do is, you know, every time I used to walk into my mum’s flat, “Hi Mum, give us a kiss,” and you know, as she went, “Bye Mum, give me a kiss,” and it’s not being able to do that for 10 months has literally gutted us all to be honest. It really has, yeah’.

(Family Member 3)

Changes to guidance on visiting over the course of the pandemic meant that social visitors began to be allowed onto CH premises. Visitors and residents were sometimes separated by a screen or used a bespoke visiting pod; they were often instructed to keep 2 m apart. While screens were welcomed as allowing in person visiting, where previously none had been, they nevertheless posed challenges. A family member below described how the position of the screens hindered communication with their resident relative:

‘And then they moved to the system whereby [name of resident] was the other side of a window with a screen between him and the window, and I was sitting outside. It was in the winter-time – not very pleasant. But what we found was I got reflected in the screen that was inside between him and the window, so all I could see was me, and he had exactly the same effect the other side. So, all he could see was him. So, we were talking blindly to each other, and he lip reads, so we struggled greatly with that, and particularly when I had to wear a mask’.

(Family Member 7)

Even when visits were permitted, physical contact was not always possible, and this was described as unsatisfying and, on occasion, resulted in families feeling more isolated from residents. As one relative described it:

‘I didn’t want to miss out on the physical visits, because it just felt nice being that close to him, but it was quite frustrating because it didn’t provide what we expected. So, the visits were a bit stilted and little bit, not uncomfortable, but unrewarding shall we say’.

(Family Member 7)

However, despite the rules on visiting, the desire to touch became overwhelming for some. We have described in Chapter 5 and above (for residents) how CH staff worried that residents and visitors would break social distancing requirements. On occasion, family members did have physical contact with their resident relatives in ways that were not officially permitted. As one family member told us:

‘I do social distancing, I do socially distance for quite a lot of the time but when I’m in the room and I’m with Mum I can give her a hug. I can give her a hug, she needs it’.

(Family Member 17)

Workarounds for physical contact restrictions included, in one CH, finding ways for family members to provide forms of personal care such as helping with meals or brushing hair. This structured way of resident–family member interaction was somehow more acceptable for CH staff. For instance, one visitor described giving her mother a manicure:

‘ [W]e’ve missed the hugs a lot, I’ve missed the hugs and she’s a very touchy-feely person so she does like to be touched. So what I’ve been doing when I have come in, just for the indoor visits, is the ladies provide me with things that I can do a manicure for her. So, you know, I’m touching her hands and massaging her hands a lot, and she loves having her nails done in something sparkly’.

(Family Member 12)

Another family member described how she took the opportunity of her mother visiting the hospital to physically touch her, partly to alleviate the sense of loss she felt in not being able to care for her:

‘She needed to go to the hospital, that was the first time I was able to touch my mum again and hug her and whether it’s remorse of not being able to take care of her or it was just being able to give her a kiss and a cuddle and smell her skin, even if I’m not allowed to actually touch her, that meant a lot because we spent … we spent a couple of hours together in hospital’.

(Family Member 16)

As described in the previous chapter, mask-wearing requirements also made connection and communication difficult. A family member shared how difficult it had been to tell his mother about a family bereavement while wearing a mask and not being able to comfort her by hugging her or holding her hand:

‘… having to give bad news to an elderly relative, my mother, wearing a mask means she couldn’t see my face and I couldn’t hug her, or touch her hand, as such, to you know, because her face crumbled and she had tears in her eyes, and it was just, added an extra layer of pain between us on a situation of telling something about a death, and of course it was linked to COVID’.

(Family Member 13)

Family members’ experiences of remote communication

As we described above in the section on residents, and elsewhere (see Chapter 5), CHs introduced various communication technologies during the period of visitor restrictions to facilitate communication between residents and their families and friends, and aid communication between CHs and families. We have described the challenges of using such technology elsewhere (see Chapter 5). Family members also told us that the experience of remotely communicating with residents was less personal for some, with typically a lot of background noise and activity. However, while it was not a perfect means of communication, it was still ‘far better than having none’. Some relatives told us that remote communication did not give them a full picture of residents’ condition and well-being; their preference was to be with the older person ‘to see her with my own eyes and, you know, and make my judgements’ (Family Member 3). They sought out signs from video calls, for example the condition of the resident’s skin, and whether the resident’s hair appeared brushed to reassure themselves that residents were always cared for well:

‘So she’s cared for, her skin’s cared her, her skin, her face, skin like alabaster on her face, beautiful skin, she’s 91 years of age, that remains, there’s still a head of hair, always brushed, her teeth are always cleaned, and I’ve got to me, we, I’ve got to believe that that is how our mum is, when we’re not there, and we’ve got no reason, her room, all her stuff around her room is always kept safe and her laundry’s done’.

(Family Member 10)

Other relatives realised that communicating remotely suited them better than the still restricted physical visits. For example, communicating by video-phone enabled personal conversations to continue between a husband and wife:

‘Well, very early on, my children bought [my husband] a video-phone, and it’s like a small television screen and we use Skype on it …. And we found those much more satisfactory than the physical visits …. So, we came to the conclusion that the chats we had on his video-phone were much more enjoyable actually, and he saved all the things, the important things he wanted to tell me for when we were on the video-phone’.

(Family Member 7)

Another family member respondent told us that regular FaceTime calls between her cognitively declining mother and family members had improved her mother’s mental well-being:

‘From July onwards my mum really, really deteriorated and we thought at one point we were actually going to lose her, so we actually put in place daily, or every other day FaceTimes … and we actually found that helped my mum, because we were losing her, we were aware she was just drifting away from us. But by us seeing her each day and reminding her who we all were, kind of helped and that the home here were brilliant with that, and you know, we had daily FaceTime calls and we noticed within about a week that really improved’.

(Family Member 3)

Families were keen to continue communicating remotely with residents. They had also allowed better connections to be built among generations of a family, especially in situations where children and grandchildren lived far away from the CH or could not otherwise visit often. One relative told us:

‘[Mum] has been Skyping with children, grandchildren and so on, which was something that we actually didn’t do before but is something that has actually been very meaningful for her and even when restrictions are off, I think that’s something that will be a legacy you know, a benefit that she’s got used to doing that now and taking calls from the grandchildren so yes, so I think that’s all helped to keep her connected’.

(Family Member 5)

Families valued the various initiatives implemented by CHs to share information and updates about their resident relatives’ welfare and the pandemic situation more broadly. Most took the view that CHs were ‘very good at keeping in touch’. Communication took several forms: email newsletters from the CEO or CH managers, which in some cases had been ‘ramped up a bit’ since the start of the pandemic; notifications regarding any confirmed cases of COVID-19; telephone calls, for example, from a well-being team member if residents needed personal items such as new clothing or family telephoning to ask for a resident update; family feedback sessions facilitated by CHs using applications such as Zoom/WhatsApp/FaceTime; posting online photographs of residents participating in various activities and entertainment. One relative commented:

‘The pictures on Facebook are invaluable to families, absolutely, seeing what they’re doing, I mean you don’t always get a picture of your loved one in it, but you can see what they’re doing, so and birthdays as well go on, so you can see they’re celebrating birthdays and everybody gets cake and stuff like that’.

(Family Member 1)

Some family members mentioned applications such as the Relatives Gateway platform produced by Person Centred Software, which was upgraded during the pandemic to incorporate video-calling functionality:

‘You can see pictures of Mum, you can have a video-link, which we’d never used, and there’s a daily morning, afternoon and night-time debrief on the Gateway’.

(Family Member 10)

Learning from the pandemic: perspectives on improving care for older people

Family members often talked at length about what CHs and the government could learn from the experience of the COVID-19 pandemic. Several relatives suggested that CHs and others should develop and plan better infrastructure for remote communication between residents and the outside world, paying attention to residents and families’ diversity of needs and abilities. One family member proposed the establishment of a dedicated communication room within CHs:

‘I’d definitely like to see more fixed video-settings, not sort of like a WhatsApp phone in the lounge, etc., I’d like to see dedicated areas for it, and I’d you know, obviously that it’s partly this is a space consideration and a time consideration for the staff members that are, you know, are on duty, but I’d like to see that, I’d like to see something more formal, and perhaps an easier to access and you know, engage and book slots, etc., and have them in a diary’.

(Family Member 13)

In addition to facilitating connections for residents via digital technologies, some family members spoke about the importance of connecting residents with the outdoors and nature, which would not only be helpful in times of epidemic but also be more generally for residents’ physical and emotional health and well-being. This might require rethinking CH space:

‘I would go back to almost like a monastery design with a courtyard in the middle that’s covered, that you can walk, I don’t want you to run round it, I want you just to be able to walk around it and see some flowers. So you’re having some exercise and you’re getting some nature and I think that’s what, that was what I feel my mum and a lot of people need. I would say that would be my first thing is you must be able to get them out somehow, outside’.

(Family Member 12).

Relatives and residents told us about the importance of ensuring that the relevant authorities (CH groups, UK government) learnt from the findings of our study and other research on the sector’s experiences of COVID-19. They emphasised the following points as necessary for authorities to reflect on: earlier COVID-19 testing for people coming into CHs from the hospital and other settings; earlier implementation of IPC measures; clear, coherent and consistent social distancing guidance; emergency teams to target support for CHs with COVID-19 cases. One relative said:

‘… as with everything in life, hindsight is a wonderful thing and last year when hospitals were allowed to discharge patients who’d had COVID but didn’t test them before they left and sent them to care homes, that was just an accident waiting to happen’.

(Family Member 8)

Another complained that measures that would have eased communication and visiting were introduced relatively late after the pandemic had begun:

‘I would like to have seen earlier on perhaps a situation where you have like, you know, Perspex and chairs either side, even if you’re wearing masks, if the resident was wearing a mask and the person coming to visit them was wearing a mask, I would have liked to have seen that done, done early, that the actual sort of screen didn’t arrive in the marquee until quite late, yeah. I on behalf of the family, the family purchased the marquee for the garden here’.

(Family Member 13)

Balancing risk, choice and control in policy-making was discussed by several family members. Some relatives made it clear that in the event of another pandemic, CHs should not be sealed off from the outside world. This was because of the detrimental consequences for residents (particularly those living with dementia) they had observed during 2020–21. One family member told us:

‘I think it’s don’t lock, don’t lock care homes down … I think there has to be a way that residents need to be allowed people to come in and see them, hopefully we will never have a pandemic like this again, but I think this, they need to use this as a learning curve, right, what can we do, if this ever happened again, because you can’t have older people, elderly people dying because they’re not seeing their family’.

(Family Member 3)

Others thought that ‘locking down’ CHs had been the right course of action despite the negative impact on residents:

‘… when it was, the first lockdown … the home was closed completely. Although I have to say I wish it had been done earlier. I wish the Government had made that decision earlier however, so I’m glad they did. I would hope care homes would be locked down a lot sooner, at the same time the quality of life for those residents would probably suffer in doing that so it’s hard to know’.

(Family Member 11)

There was nevertheless a recognition among residents and relatives that this appeared to be an unprecedented situation in which people were constantly learning as the pandemic progressed:

‘I think it’s all been a learning curve for everybody, it’s just there was no rulebook to go to was there, nobody knew how to deal with it, or cope with it, yeah’.

(Family Member 10)