Category: Coronavirus / Covid-19
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
JH - Jo Hockley
A study to gauge how lockdown restrictions have affected the families of care home residents, have been published. 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. Jo Hockley, Research Fellow at the University of Edinburgh tells us about how care home staff and family carers responded throughout lockdown.
MD So, today I’m speaking to Jo Hockley, one of the members of the research team involved in looking at the impact of visiting restrictions on family carers and how care home staff have responded creatively to support contact and communication. This rapid study took place between May and October 2020 so, it was the first phase of lockdown. It was funded by the Chief Scientist’s Office in Scotland and involved the Universities of Edinburgh, the University of Strathclyde, the University of the West of Scotland and Iriss. So, welcome Jo, thank you for speaking to me.
JH It’s a pleasure.
MD Can you just tell me a bit about yourself firstly and why you were interested in getting involved in this piece of research?
JH Yes, well my background is in palliative care nursing and I trained back in the 1970s but a lot of my career has been in palliative care and then in 2000, I did my PhD that looked at death and dying in care homes. It was an action research PhD and I was really impressed by care homes, I had never been in a care home before then but I knew from that day on, having done my PhD then, I wanted my focus to be care homes. So, I’ve done various bits of research in care homes and then in 2018 up here at the University of Edinburgh, well I got started to get involved in care homes here and we set up something called the Care Home Innovation Partnership. So yes, I’m a Senior Research Fellow at University of Edinburgh, now working within primary palliative care research group and our chip partnership involves doing tests of change in various care homes and I suppose with this piece of research, I got specifically asked to help lead part of the research that was focusing on care home staff themselves rather than the families and their perspective of bridging this communication between themselves and the families who couldn’t visit.
MD Okay, can I ask, is it the care home staff then that particularly interested you when you started to go into care homes? What was the appeal of care homes?
JH Yes, firstly I realised that my training in specialist palliative care with cancer gave me very little help working in care homes where people were dying of old age, of dementia, heart failure, so care home staff taught me so much. So, there was that aspect, the difference between specialist palliative care and what I would call, is normal or generalist palliative care but also the staff. I was so impressed by their person centredness in their care with the residents.
MD How are care home staff then coping in these difficult times?
JH Well, you know yes, care home staff I think have been particularly affected by covid. As I said earlier, already the residents were terribly frail so, many residents in care homes are in their last year of life so they were very frail and I think the care homes especially those care homes without onsite nursing, or nurses, onsite nurses, really struggled to cope. They don’t come from a health care background and then suddenly there were people who were incredibly ill dying in a different way than normal because they had covid and with little professional support from outside. We didn’t have GPs visiting and so I think care homes were very much dependent on the leadership within each care home, yes so, they’ve had an incredibly difficult time. I mean, even before this covid, they were very short staff and then with residents becoming so ill and then staff going off sick with covid and some of them being really ill. They weren’t necessarily going of for quarantine because testing wasn’t around and then some care homes, I heard, they asked for agency nurses to come into their care homes to help them and directly the agency nurse was on the doorstep and realised they had covid positive patients, they wouldn’t come in and do a shift. So, they were really on their own, so not only sort of under-staffed before covid started but you know, many are there not because of the money, that they’re there caring because they really want to care and staff in care homes get less than stacking shelves in Sainsbury’s of Tesco’s or whatever so, under-staffed, under-paid, and not recognised for the huge work that they do and then covid strikes.
MD And how many care homes were involved in this particular piece of research that you looked at?
JH Well, in the particular piece of research that I was involved with, with this research, we had wanted 15 care homes but unfortunately, we didn’t get 15, we got 5 care homes. That was slightly disappointing but we have to remember that they were under such pressure.
JH And you know, their priority was looking after residents, trying the best as they could to communicate with their families. It was interesting that the 5 that I contacted, I knew very well, so I already had a relationship with them and that made it much easier to be able to find out how they were.
MD And did you see common challenges across the 5 care homes for the actual staff?
JH Well, I have to say the care homes that took part, they were all care homes with nursing nurses on site so, they didn’t have perhaps the same struggles that care homes relying on district nurses coming in and they were used to doing training and they were used to taking part in research projects. They might have been slightly different to a more generalisable sample.
MD Sure, sure, grand. And can you tell me how has covid affected the relationships with family carers then?
JH I mean I think that was very difficult to begin with. We had 2 care homes that had something called electronic care planning. So, they had all the iPads and the iPhones and the devices to be able to communicate online and through WhatsApp or Skype or Zoom and that made a huge difference but for those care homes that didn’t, there was this sudden influx of the phones going and anxious relatives wondering how their loved one was in the care home, especially if they knew that that care home had a covid outbreak.
But very soon the care homes got organised, the staff got organised and they set up a spreadsheet of all the residents in the home and the families, the next of kin, all on one sheet with the telephone numbers and they would regularly, depending on what the family wanted, but either every day or 2/3 times a week, they would speak with the families over the phone but then once the iPads came, then it was much more the responsibility of the care assistants. You know, helping to connect with a relative at a certain time and in that way the care workers who are involved in the day-to-day care become much more involved with the families in a way that they weren’t before. Whereas before they might just pass the time of day in the corridor, it had been the senior carer or the nurse that had communicated with the families but now it was the carers on the iPads. Yes, introducing or helping a chat between a family and the resident but they were part of that so they got to know the families much better, the carers did.
JH Which was very interesting and those carers really valued that sort of difference, that responsibility really.
MD Right, okay. It wasn’t something that added to their workload?
JH Well, it did add to the workload, there’s no doubt about that but because you know, they had to fit in the sort of quarter of an hour or 20-minute chats but it gave them a chance to be with the resident and I think the benefits of seeing how pleased the residents were in chatting with their families, that really took away any feeling that, oh it’s yet another thing to do. You know, they really enjoyed being able to speak with the families and getting to know the families better with the resident, alongside the resident.
MD Interestingly, it’s a really great way for the relationships to build up.
JH Yeah. With the family and the resident as well. I mean, a lot of staff in care homes have an amazing sort of person centredness towards the resident but actually sometimes when the family come in, that they might think, oh well, I’ll go and they go and they’re busy so, they don’t stop and chat whereas this was much more relationship based. Both the family getting to know the carer, the carer facilitating this conversation between the resident and their family member.
MD And it must have changed then the family carers perceptions of the staff then as well?
JH Yes, I think it did. I mean research shows that where you’ve got good information being passed between the head nurse or the carer to the family and where the family can get properly involved, that trust builds up in a care home and that’s really, really important and I think many of the care homes that or the staff in the care homes that I spoke to, they had good relationships with the staff, they felt involved. It was just that initial, well how are we going to communicate? And directly, all the iPads, and we learn how to do Zoom and WhatsApp and all these other things. Yes, it was very good communication, they did really, really well on top of all the work that they had to do anyway. And of course, volunteers couldn’t come in, so they were down to the minimum number of staff, especially with some of the staff being off sick.
MD Do you think that fundamentally care home staff roles will have changed and will continue to change as a result of the pandemic?
JH Yes, I do. One of the things that seemed to happen because people were off sick and they hadn’t got enough hands on deck as such, so like one person I spoke to was a physio so, she become much more involved in the care and sort of boundaries between the different professionals within the care home, like an OT or and Activities Coordinator, those boundaries just dissipated and hierarchies came down and people just mucked in together like a big team together and we had some activity staff, I remember one activity staff, she was asked to sit with somebody who was dying, a resident who was dying. She’d never sat with anybody who was dying before.
But because the family couldn’t come in and this care home didn’t want this person to die alone, and she was profoundly affected by that. That day, she sat with 3 people who died, in one day.
MD Yeah. And if you haven’t done anything like that before, that will be extremely difficult and potentially quite traumatic for a person, so was there any support put in place?
JH you know, she was obviously seen to be capable but she was crying but there’s an openness about that and when I interviewed her, she said it was a huge privilege to be able to sit with that person. So, the care homes had wonderful support, very good leadership, the ones that I did these group interviews or individual interviews with. They had very good leadership but I mean, having 3 deaths, having 3 people who you were sitting with dies, within a day was huge. So, on another study, I was asked to come in and give them some online support and reflection around the death and dying but they felt, the staff that I chatted to, felt very supported by their leaders in the care home.
MD Can you tell me about some of the more creative ways that technology was used to create connection and communication with families?
JH Yes, I think you know, with the everyday sort of living the WhatsApp and I remember one situation where the family was in Spain and in fact perhaps phoned every couple of weeks or whatever but directly Zoom came in, this family organised the celebration of this lady’s 100th birthday and so she had all the people in Spain and other parts of Scotland that she knew and it was a wonderful celebration of her 100th birthday. I mean pre-covid that wouldn’t have happened. The family might have come over from Spain, in this instance they couldn’t come in, but she had a wonderful 100th birthday because she was connecting with all these people, family in Spain, but also friends in Scotland. The care home manager, they used their care home Facebook page as a way of informing all their families what was going on. So, they would update their Facebook pages every week, more often if necessary but one of the care homes: they used something called Workplace which is on Facebook and they would have different households within the care home connected to this Workplace where families could read or upload messages to other families and if somebody died, there was this mutual support between the families, oh so sorry to hear that your dad died, you know. That will carry on, that sort of support and talking about dying: it was very profound to listen to some staff talk about how they, because a relative at that point wasn’t allowed to come into visit, I mean I think it’s slightly different now but it was very stringent in April and May and they weren’t allowed to visit but they wanted to say their goodbyes and normally, a family would sit in the room of their mum and dad who was dying and just naturally say their goodbyes or speak to mum and dad while they were in the room alone but obviously they couldn’t do that with covid. Staff were being asked to, through their WhatsApp, share these goodbyes that the relative wanted to say to their loved one and staff found that very emotional to hear these goodbyes going and sometimes it was then, if a son had called in the morning and heard that, the son had been able to do this then the daughter would phone later on that evening and say her goodbyes and I think that was a big emotional strain on the staff, big emotional strain. Well and on the families of well, not being able to be there to say their goodbyes but good on those families that wanted to say and thought up about doing a WhatsApp and asking the staff to go into the resident’s room so that they were able to say their goodbyes over WhatsApp.
MD Because the staff would have realised how important their role was in that as well, so while it was very painful and emotional for them, I’m sure that there was some sense of sort of being privileged to be able to do that, as well.
JH Yes, but it was a guy I was speaking to who did this and he did find it … you know he found, well these are private words that should be said between the daughter or the son, to their parent who was dying and he felt he shouldn’t be hearing it.
MD Yeah, difficult to hold as well.
JH Yeah, very difficult but you know, in many ways transforming really for the staff who were involved like that.
Never having done that before.
MD I suppose like looking forward then, I mean what has been learnt from the experiences of the pandemic, really?
JH I think the role of the family has been really heightened and the sort of informal care that family give, the psychosocial care that the family give to residents and I know care home staff think, yeah, they know about whole person care, but a family really do give that emotional support in a way that I don’t think perhaps care home staff realised before the pandemic. And almost for them to be seen and this has been talked about quite a lot now that relatives and family members are seen as informal carers or key carers in care homes because they do fill an hour or 2 in a day for a resident who hasn’t got the ability to amuse themselves. So, I think that is really important, the sort of key carer role. I think greater relational compassionate care amongst the staff that they’ve really risen to that and forming relationships with families and I think this pivotal role that care home staff in facilitating and maintaining the centrality of the family and speaking again about that family in Spain. They brought that family in Spain so much more into the care home and, in fact I think now, they will speak to each other for 2 or 3 days on Zoom.
MD Yeah, I was about to say: I’m sure it’s increased the frequency of contact with families.
JH Yeah. Which is wonderful and I think families realise all the little things that staff do. There was a gentleman who was transitioning into a care home towards the end of our study back in the summer where people were being allowed to be admitted to a care home and this was into the covid free care home but the staff did wonderful filming of this gentleman because he had to be isolated in his room for 2 weeks, so filming him doing a dance and sending that to the family. You know, it’s these little things that reassure the family that he’s being welcomed into the home and being made part of that family, as such.
MD Sure, yeah really important stuff. Did the research highlight anything that needed to change?
JH Well I think the biggest thing it highlighted which is probably being published in the main primary paper, is that the need for health and social care policy to recognise the work that care homes do or care home staff do and I think it’s not spoken widely enough that actually there are 3 times the number of care home beds compared to all the hospital NHS beds in the UK. It’s huge work that care homes do and there’s been this disconnect between health and social care, it’s been a very social care model: which is great, but that was fine for 20 years ago/30 years ago but now with people being so much frailer in care homes, and 70% of patients, residents in care homes have dementia and so they need an amazing amount of care and they have multiple diseases. You know, yes, they might have dementia but they’ll have heart failure or arthritis as well and I think we do need a greater emphasis on health to support care homes in the future.
MD Okay and did you welcome the independent review of adult social care? The report’s just been recently published.
JH Yes, I did see that. And I think what is really important is that health mustn’t take over care homes. They mustn’t be made into clinical settings, you know, they are a person’s home but we need to look at, I personally think, more funding from health into care homes and not just relying on social care funding because many people, well the mean length of stay of residents in care homes is now 15 months, so it’s not years but the mean length of stay is 15 months. These are very frail people with palliative care needs and many of the workforce need greater training in palliative care. Palliative care is not part of statutory training of care homes.
MD Right, okay.
JH And I think that needs to change. We need to get greater palliative care, not only support but training for care home staff. I don’t think we can go from this situation that we’ve had and still are having in covid, I mean I’m supporting care homes through my online supporting conversations who’ve gone through the second wave and have had a huge number of deaths in the second wave up here in Scotland and I don’t think we can just then flip to normality or near normality, I really think we need to think about a recovery phase and the effect that the grief that these care staff have gone through because of the relationship they have with residents, is incredibly strong. I mean, some care staff spoke to me saying, oh they’re our professional family, the residents are. Our professional family. So, they have this great bond and then with the type of dying that happened with covid, a: some dreadful distressing breathing symptoms but also suddenly that the suddenness of the death, you know some people died within 2 or 3 days from having been well and there’s no time to adjust and this massive amount of grief that some of these care home workers are holding needs help.
MD And what would you suggest for this sort of recovery phase? Is something being put in place currently for this?
JH Interestingly, we did a very small study, only 3 care homes, looking at the shock of all the deaths that they were having. So, this was my other study online supportive conversations and reflection. We called them OSCARs and they were picked up as being really helpful from NHS Lothian, with the assurance visits into the care homes so, we’ve been given funding to role those out so, we’re going to do monthly reflective debriefing, if in fact there’s been another wave, we slightly use a different format, much more about what’s been difficult rather than more of a reflective cycle that we use if there’s only been one death the month before but I do think it’s an opportunity for psychologists, for specialist palliative care to reach into care homes a wee bit more to help support them. There are a huge amount of well-being acts and literature and resources out there and we have actually now as a result of covid, started up a care home webpage for Lothian and I think Glasgow has a care home webpage as well, where you can get all the latest resources, a newsflash every week, getting in there to help support care staff. So, I think making people aware that there are these resources for them to connect to, is really important in this recovery stage and we can’t expect working with reduced staffing and still being able to … you know, it’s a catch 22 situation because they need the residents to get the money in so that they don’t go under, care homes don’t go under but at the same time if they haven’t got the staff, or the staff are under pressure, that’s a really difficult situation and we need to understand that situation.
MD Sure, there’s something about understanding the full picture and then being able to support with resources.
MD And support for individuals as well.
JH Yes, yeah.
MD I’d like to thank you for your time today, it’s been really great to speak to you about this research.
JH Well, it was very good chatting to you and yeah, absolutely fabulous.
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