Transcript: Impact of lockdown on care home relatives

Podcast Episode: Impact of lockdown on care home relatives

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MD - Michelle Drumm
LJ - Lynn Jamieson
SS - Sarah Swift

MD In this episode of Iriss.fm, the first findings of a study to gauge how lockdown restrictions have affected the families of care home residents, are presented. The research, titled, Creative Covid Care, highlights the relationship-based and creative practices used to support communication and connection while visiting restrictions have been in place. This rapid research project, funded by the Chief Scientists Office at Scottish Government, has been led by the University of Edinburgh with partners from University of Strathclyde, The University of the West of Scotland and Iriss.

At an early findings session in October, which was led by the Centre for Research on Families and Relationships, Lynn Jamieson, Professor of Sociology, Families and Relationships at the University of Edinburgh; and Sarah Swift, a Postdoctoral Research Fellow at the University of the West of Scotland, provided an overview of the initial findings.

LJ I’m just going to say welcome, I’m Lynn Jamieson, I’m part of this project. I’m going to speak for a little bit and Sarah Swift is going to speak for a little bit. Both of us were involved in the interviewing. There are very strong common themes that come through. Sense of loss and worry about the lockdown and not being able to visit a loved one in the care home is a very pervasive theme. But at the same time, it’s important to understand that there’s considerable diversity, quite a range of experience. And it’s partly because of course that the 37 family members that we interviewed have different relationships. So some are visiting or wanting to visit somebody who is a parent or a parent’s generation. For some it’s a peer, a partner, or a sibling. But also there’s some variation in the care homes themselves. And these things do make a difference. And there are men and women in different circumstances among our interviewees. But as well as these different characteristics, there’s different experiences that make a difference, including obviously the past history of their relationship or quality of relationship, they had, the pattern of visiting that’s now been.. that was disrupted by the lockdown and the extent of that engagement and their loved ones care. But behind that, often there’s how they felt about the fact that this person that they cared about is in a care home. Whether that decision was taken and by them or by the resident in the care home. whether they feel that a care home is a kind of last resort, or whether they felt it was a positive choice. But overwhelmingly of very important, of great importance to their experience is how much trust they could put in the staff of the care home, what that experience had been like to date before the locked down so that the hard confidence in the care home, the care home staff, as well as of course, other factors like the extent to which their relative in the care home was able to communicate well or their capacity was at that time, how settled the already were, how long they’ve been there and for the family member, but what other challenges they were facing in their lives, all of these things make a difference. So many of the family members who took part in this research were very happy with the standard of care their relatives received and had a high level of trust in the care home. But there where some cases at the other extreme. So the experience of a woman we’re calling Mary Brown and all the names we use are pseudonyms would be one example. She was very unhappy with the standard of care in an NHS specialist unit that her mother had been routed into when Her placement at a nursing home didn’t word out. And in the first weeks, she confronted the manager about her mother being put in a restrainer chair which she was very unhappy about and was basically told she just have to put up with it. And a series of events led her to believe that her mother had lost her mobility because of her care, the standard of her care. So during lockdown, of course, she couldn’t take comfort in the standard of care and trust in the care home staff because part of what she felt she was doing as a visitor was protecting her mother. So different people feel that they’ve got different functions when they’re visiting and they’re achieving rather different things. But the general feeling of loss, even for people who were very trusting of the care home and had nothing but good experiences was still, could, still be very overwhelming. It could be so overwhelming, that, some people talked about it as a bereavement. And it’s obviously more overwhelming when people’s whole, when people’s lives have still been very structured by visits to the care home where large parts of most days are spent visiting care homes. So that previous pattern and how it’s disrupted is obviously important. So the intensity of the relationship with their family member and how that was still continuing once they moved into care. And, and how that was then disrupted is part of the story. A worry, a sense of worry was very, very common even as I said. for people who were Sense of worry, even for people who were very trusting of staff and felt that the relative was really in the best place. But even when your relatives and the best place, that doesn’t mean that not being able to see them involves no worry. A background worry was, was the common, was the common theme. But for some people that worry is also tinged with guilt because they felt that they were responsible for their loved one being in the care home. So here in this quote, Leah mentions guilt, but actually she had been prior to her mother going into a care home, visiting her mother, five times a day in a home very nearby. And sometimes can called out at two o’clock, three o’clock in the morning by her mother and she just basically felt unable to cope any longer and felt had no choice but to her mother in a care home and that’s how she thought about it. And and so she’s talking about guilt as well as worry. And then Mary, who I referred to earlier, who was very unhappy with the standard of care that she thought her mother was getting. She just felt absolutely helpless. Useless as how she described it. It’s a word that she uses for herself, for her because she not only has this worry, she also feels that a mother’s not in a very good place and it has a particular and has a particular difficulty. So I am trying to let people in at the same time and lost my ability to move the slides somehow. Here we go. So what people felt that they’d lost. Sorry, I realise that these are covering over the please feel free to somebody unmute and shout at me if I’m doing something stupid, like covering over the slide, which I think I may be have been doing? What people felt they’d lost then depended in part the many things that they felt that they were doing. But everybody was, or most people had a sense that their, their relative, you know, they’re moving towards the end of their life. So what you’re losing is not going to be ever coming to you again. And for some people, it was a loss of their own normality as well as their quality of connection and capacity to care which were very important aspects of their own identity. But the fear of loss, the fear is also the loss is also about fear of what the relative is lost . What the person in the care home has lost. And that depends on the different things that people were doing for the person in the care home. But it’s hard to underestimate how many things relatives who are visiting someone in a care home do do, And this is not by any means an exhaustive list that’s on the overhead here. And so, for example, the maintenance at a skill - well that skill might be remembering how to use your, your, your phone or some basic skill. as well as stimulation, enjoyment and so on. But just keeping someone connected to their normal or previous life, a sense of being a sounding board, confidence building all of these things, as well as the kind of protective care and supplementary care that a lot of people were doing. And the lingering sense afterwards that people would be in decline because their relative in the care home would be in decline because they weren’t receiving things that they would otherwise get - was quite an important element of what was happening. So a very common theme as part of loss is touch. It’s….. Sarah will speak a bit more about the loss of face to face contact and the significance of that - physical, physical contact, of course, is another thing that wasn’t there when people couldn’t actually visit. And there was different ways of trying to deal with that. But some people were not only feeling it themselves, but mindful of having to try to explain to their loved one why it couldn’t happened. Because they didn’t completely understand because of their own stage of capacity and cognitive well-being. And so some people did have creative solutions like this one on the overhead with the dressing gown and sharing, a dressing gown rather than physically touching. But it was something that was very difficult for many people. And care homes varied in the practise of getting round the lockdown in terms of no footfall in the building or the environment. And some care homes very early on, started to make use of their garden for garden visits, whereas other care homes absolutely wouldn’t go there until it was officially sanctioned. So there’s quite a difference in what people experienced consequently. And of course, it was also dependant on whether the loved one in the care home had a room with easy access to the garden. So that practise of speaking in through windows was also something that varied quite a lot. And some care homes allowed early on and others absolutely Just did not want any foot fall near the building until it was sanctioned. But not all as this particular Valerie, quote. shows - it was not all relatives who were told that they could do the garden visit before it was officially sanctioned, publicly felt comfortable with it. So some people didn’t take up the option for fear of the virus. So again, there was variation. And then they actually experience when people did have a first visit after not being able to visit sometimes for more than two months, sometimes three months, was often a very mixed experience. So …… calls it bittersweet, partly because of course this there’s been deterioration. He doesn’t know he doesn’t know how much it’s been because of the lockdown itself, because of his absence, and how much of it would have happened anyway. But he’s seeing someone who is worse than in visible ways than when he last saw her. And then there’s the peculiarity of the way the visits can be set up that makes awkward and sometimes there’s an sometimes it’s unpleasant surprises to Leah found her mother couldn’t hear her and worked out.. and had to go and get a carer to come to translate by speaking her words into her mother’s ear and worked out that actually she had no hearing aid in one ear and then she later thought that the other hearing aid battery was with run down. So that made her very anxious about what had been happening when she wasn’t there. because she felt that it shouldn’t have been like that. Okay, so different views about restrictions were expressed. And I won’t talk about this at length because Sarah will come back to some of, some of the recommendations that came from people themselves. But the restrictions even when they were first relaxed were still quite difficult for some people. People who travelled more than an hour, People who normally used to visit with someone else or people who used to take turns day in, day out with someone else. None of these things could be comfortably accommodated. I’ve already mentioned awareness of decline and how difficult it was, but that was a lingering feeling and that often was the result of of the the visit. And so am I going to pass over to Sarah who is going to carry on.

SS Hi everyone. My name is Sarah Swift, although you’ll see on my zoom it Sarah Noone, because I haven’t figured out how to change it yet until Lynn said it earlier. And I’m just going to introduce some of our findings around the use of communication and the role of technology during this time. And so I’m going to talk first of all about using technology and to facilitate communication between people living in the home and the relatives who would ordinarily visit them. And I wanted to start off by talking about some of the advantages of this approach. And as I’ve illustrated this with a quote from one of our participants, Molly and whose Mum was living in a care home. And she shared that they actually preferred using something like Skype to the outdoor visits that were on-offer because the visits only lasted quite a short time. Her Mum struggled to hear and obviously as the weather progressed, as it tends to in Scotland, it wasn’t necessarily the most comfortable experience to be outside. Whereas on skype, they could talk longer than once her Mum understood how to use it and was comfortable using it so she felt that they had a better quality of communication than they would during an outdoor visit. And obviously that wasn’t the case for all of our participants. One of our participants, Terry and shared, his mum was not a particular fan of video calls and didn’t feel very comfortable doing them. - they had been using video calls as a family before the pandemic happened because they had a relative who lived abroad. And they would use Skype to communicate with this relative. But the difference then was the Terry was that helping his mum to do it. And when left on her own to do it. she couldn’t quite manage it the same way and it wasn’t her preferred method of communication. I’ve highlighted here this quote in bold from Terry where he says that the online communication was better than nothing because this was a very strong recurring theme in our findings. So many people said the, the online communication was better than nothing, but that it couldn’t in any way replace - either in-person communication or being able to visit under normal circumstances. The limitations of technology became even more pronounced when the person living in the care home was living with dementia. And so I’ve illustrated this with a quote from one of our participants, Katie, whose mum is living with quite advanced dementia. And they tried to use Skype and put her mom couldn’t understand why she could see and hear Katie, but she wasn’t there and it became quite a distressing experience for both of them. And this, again was a sentiment that was echoed by quite a few of our participants whose loved ones were living with dementia and ended up becoming quite distressed or just couldn’t quite grasp what was happening with the video calls and it just ended up not being a workable solution for people in that situation. And I’m going to touch as well on the use of technology to communicate between the care homes and the relatives who would normally have been visiting. So we found that good communication from the care home could really help to mitigate the impact of the lockdown and the ongoing pandemic for our participants. And so Harriet one of our participants whose husband was living in a care home, had received excellent communication from the care home. She received regular emails about how her husband was doing individually and what was happening in the care home overall. She was invited to relatives meetings on GoToMeeting, and she felt that she could get in touch with the care home by phone at any point and find out how her husband was doing. And importantly, she also felt that if there was anything that she needed to know, the care home would reach out to her. And that gave her a lot of reassurance. during the time when she wasn’t able to visit. On the opposite end of that spectrum, we found that poor communication from the care home, really exacerbated some of the difficulties that some of our participants were facing. And so Jill, one of our participants who’s step mum moved into a care home not long before the pandemic really escalated, had really struggled with communication from the care home. She had reached out on several occasions to say that she wasn’t happy with the level of communication that she was receiving. And she felt that any information she did manage to get about how her step Mum was doing was through almost she felt harassing the care home to get the information that the staff weren’t very forthcoming in letting her know how her step mum was doing. Obviously she acknowledged that the staff were very busy and overworked and overloaded but she found that the situation made an already tough time even more difficult for her because she felt that she wouldn’t necessarily know if her step mum was ill or needed to go to hospital or have some kind of treatment. And that really exacerbated the worry that she was already feeling having not been able to go and visit her step mum in the care home. We also found that communication that was facilitated by the care home staff between residents and their relatives was often dependent on one or two members of care homes staff who were particularly tech literate. And although it’s obviously a great thing that there are members of care home staff who are able to facilitate things like video calls, it’s quite a risk and quite a potential barrier as illustrated by Harriet here. Obviously I mentioned Harriet earlier because she had a really positive experience with communication from her husband care home but that was largely because of one particular member of staff who was very tech savvy and very committed to make sure making sure that relatives were able to keep in touch with their loved ones. And this particular member of staff was due to go away on holiday for two weeks. And Harriet was really worried that as a consequence of that, the communication channel and that communication be closed. And it just goes to show how important it is to not be reliant on one member of staff to facilitate communication. So our analysis of our findings is still in progress and I’m sure that we will develop more recommendations and more themes as we go along but based on where we are so far these are some of the key recommendations that we’ve pulled out based on what our participants have told us. We feel it’s important to recommend changes to visits in care homes. Now we know that this is already underway thanks to a change in policy from the Scottish government, which was due in no small part to the work that a lot of people who’ve attended this meeting today have been doing. but obviously we’re still quite away from that policy translating into practise. And so we’d like to recommend - physical touch as an essential part of visits, finding a way for relatives to safely be able to have physical contact with their loved one. We had quite a lot of feedback from our participants about the lack of physical contact as Lynn touched on earlier. And there was also quite a sense of frustration about the inconsistency of that policy, because obviously in other social settings, if you’re wearing PPE, than the need to physically distance from other people is reduced. And some of our participants, we’re frustrated with the fact that the care home kind of policy was inconsistent with that in other social settings. One of our participants was doctor, for example. And in her role, she was wearing PPE, she was allowed to make physical contact with patients. and couldn’t understand why that wasn’t the case when she went to visit her mum. And so we’d like to see that more consistency around that and facilitating safe physical contact. We would also like to echo calls for a transition to indoor visits. We all live in Scotland. We all know that outdoor visits, aren’t going to be a viable option for much longer. And for many of our participants, they weren’t really viable in the first place. Even in the height of summer their loved ones still felt the cold too much to spend half an hour outside. As Lynn touched on, we also feel its important that for the care homes to designate more than one relative to be able to visit the person and we had a lot of participants who would share visiting with other members of the family to make sure the other loved ones got a chance to see the person who is living in the care home. And also sometimes to share caring responsibilities. And I’m sure many of you are aware that just because a loved one, moves into a care home you don’t become any less of a carer. Many people would still help with physical care, help mealtimes, help with various things along those lines. And a lot of those responsibilities were shared with other family members and without falling to one designated visitor. And so you feel it’s important to find a way to safely and facilitate more than one person visiting the care home. Leading on from there our findings echo the current campaigns, allocate key worker status to visiting relatives of people in care homes. One of the strong themes that emerged from our findings was the amount of additional care provided by visiting relatives. And even the fact that the word visitor was contentious term because it doesn’t really encompass what people actually do when they spend time with their loved one who is living in the care home and they provide quite a lot of additional care that the person is now missing out on and allocating key worker status to this team relative providing PPE providing regular testing so that they can be in close contact with the person, would enable them to resume that caring role. I mentioned that facilitating communication is often dependent on one or two members of care home staff and on that basis, we recommend that the provision at digital skills training for members of care home staff because nobody would rightly expect care home staff members to be experts in tech because that’s never been a prerequisite of that job and it’s something that’s suddenly been thrust upon people. But we feel it’s important to make sure that care home staff members are equipped and competent to fulfil that role if it’s going to be a while before normal visiting resumes and video calls become a more of a regular part of care home life. Within that we feel it’s important to create the right environment for the video calls. Quite a few of our participants reported that when they were able to have video calls they were often held in the lounge where the TV was on very loud and the light from background noise is were very distracting , for them and their loved one and it really affected the quality of the call. So creating the right environment is very important. Having knowledge of different video calling platforms. so we had examples of relatives only being offered the option to use FaceTime when they didn’t actually have access to Apple technology and therefore couldn’t use that platform. so being able to offer a few options would enable more people to communicate effectively through video calls. And a commitment to scheduling video calls is also very important. Obviously, we understand that care home staff members are incredibly overstretched at the moment but we had quite a few participants share with us that they would spend all day waiting for a video call that never came. And if it was possible to schedule video calls the way that visits are currently scheduled, it would help relatives to feel more connected to their loved one who’s living in the care home. And we also recommend peer support for relatives. And so I touched on Harriet’s experience. She had been involved with relatives meetings about that that had really enriched have experience during this time. We also had other participants who’d kept in touch with other relatives by Facebook groups and thought they’d really benefited from that. And we had some participants who shared that being able to engage with other relatives during this time would have actually really helped them to find a sense of solidarity and shared understanding. So we think it is important to facilitate some kind of online communication with other relatives and from the same care homes. One of our participant shared quite an ambitious recommendation for a review of the entire care sector and it may actually be a good time to look at changes that can be made to care homes and how care homes can be supported to transition, to this new post-Covid world in which we will find ourselves. And we’re not just talking about the care homes who may be haven’t been able to perform so well during this time. There’s improvements to be made across the board even in the best care homes. So we just recommend that now might be a good time to review and where the care home sector is and where it can potentially go. And so just to wrap up, I want to say a huge thank you to the family members who participated in our interviews by sharing some very difficult and vulnerable experiences with us with a view to helping to create positive change for people like them. And we really hope that the findings that we’ve shared today and the reports that will generate from our data will really help to contribute to a positive change for people who haven’t been able to see their loved ones living in care homes for several months now. And we hope that this will be the start of a sea change of some kind.

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