In total, 28 staff from three international sites contributed to data across six focus groups. These participants represented multiple ICU professions including nursing, medicine, physiotherapy, pharmacy and health care support workers. Focus groups were undertaken between June 2021 and July 2022. Each focus group lasted between 45 and 80 minutes. Participant demographics are detailed in Table 2.
Table 2
Demographics of focus group participants
Demographic
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n (%)
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Participant Region:
UK
France
Spain
|
12 (43)
9 (32)
7 (25)
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Sex
Female
Male
|
21 (75)
7 (25)
|
Age, Years, Median (IQR)
|
39 (IQR:32–47)
|
Professional background
Nurse
Medicine
Physiotherapy
Healthcare Support worker
Advance Practitioners in Critical Care
Pharmacy
|
10 (36)
10 (36)
3 (11)
2 (7)
2 (7)
1 (3)
|
Years of ICU experience
Less than 5
5–10 years
11–15 years
16–20 years
20 years +
|
6 (21.5)
6 (21.5)
8 (29)
4 (14)
4 (14)
|
In relation to the aims, we derived four themes from the data: the emergence of new technologies; relationships and rapport establishment, communication challenges and end of life care provision (Table 3). Within each theme the impact on clinicians, care delivery and potential improvements were delineated. Across each theme, the overarching concepts of emotional exhaustion, emotional distress and low job satisfaction emerged. Following a robust examination, we found no differences across international sites, indeed the findings mapped in an identical manner internationally. A selection of representative quotes across international sites are presented in Table 3.
Table 3: Representative quotes illustrating key themes
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Staff
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Care Delivery
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Improvements and Innovations
|
Emergence of new technologies
|
UKP: The phone calls were one of the most stressful things…Trying to reassure them, without actually knowing anything… There was not any reassurance I felt I had to give… I think there was a lot of anxiety just around phone calls and communication.
FP: We were also able to find alternatives, that is to say give online meetings and that was really a way for us to be able to at least give something.
|
UKP: It put a huge barrier on communication
FP: At worst it was anxiety provoking for families to see the person. A first visit to ITU seeing all that is destabilising, so on the screen … oh dear… with interference because the networks are rubbish. You didn’t hear well …. It was stressful.
|
UKP: The majority of people didn’t have passwords and trying to get people to explain it to you, to show it to you. They are busy.
SP: The initiative of tablets appeared, to make video calls with families, which as an initiative can be super-good and was very necessary, but at the level of workload, it was often incompatible… there were no hands or people to dedicate the time to it.
|
Relationships and Rapport Establishment
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UKP: The family brought the patient to life for us.
SP: It meant much more wear and tear to care for patients, no longer at the level of techniques or things, but at the “human” level.
FP: No family, no relatives and everything so it was often the nursing teams who had to make up for this deficit when we went to zero visits.
|
UKP: We went from being totally holistic and patient-centred to just very task oriented.
FP: There was also a feeling of disconnect from reality for the families.
|
UKP: “The volunteer service… was really helpful, where people were able to drop the things off, and then the volunteers were bringing them up. That felt like a really big step, even being able to have a few personal items from home.”
SP: Felxibility of schedules was something that could be allowed more
|
Communication Challenges
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SP: It is not the same to talk on the phone than to talk in the face-to-face situation... I think especially the proximity, the flexibility and the face-to-face situation.. it always makes it more human.
FP: It helps us to know what the patient was like before … We learn things… Medications, treatments, their way of life ….. how independent they are … All that.
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SP: you had to really make an over effort to explain things in great detail so that they could get an idea, and explain the steps, and without creating like too much hope… It is difficult to make the family understand what is happening without them being present.”
FP: I felt there was a total lack of understanding on the phone, and that I couldn’t help the families at all, on the phone.
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SP: Someone on the team has to dedicate themselves to family. Knowing that they can’t get in or out in any way, that they can’t take off their robes in any way.
UKP: Doing some, almost simulation training, of communication over video.
|
End of Life Care
|
UKP: I actually found the end-of-life stuff the hardest…I think, there are just so many different situations, where we weren’t allowed to let families in… I think the emotional burden of that was massive.
FP: But it was a shock from 24 hours a day to 0 and after, except for the people who were dying …. No, not at all, no ……they died alone …yes, they were alone.
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UKP: Only having visitors at the end of life made me think a bit differently about decisions to change the focus of care to palliation. I felt I had to make sure I got it 100% right. There was only going to be one chance, they definitely had to be dying. They were only going to be allowed to visit once. If they didn’t die in that visit then they weren’t allowed back in because they were isolating.”
FP: I sometimes had to arrange video and phone calls at the same time, they all wanted to say goodbye. I would bring the phone to the patient’s ear. It was not easy. Patients would not be able to speak, so we have to translate, in our own words. The most difficult is finding the right words.
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SP: I once have a doctor whispering to me: “I told them they could all come in, the 4 of them.” I just said minutes before, that they could only come 2 by 2, we couldn’t have more at the same time, given the organisation of the ward. As a consequence, we are not credible. Yes, that is another consequence of having mixed, blurred messages: the lack of credibility.
FP: The restrictions, they were much longer in the other departments and much more draconian.
|
Emergence of new technologies
The introduction of new technologies for the facilitation of family communication were discussed. The rapid pace at which technology was implemented caused anxiety for participants. Anxiety was due to a perceived lack of governance arrangements in relation to data protection, alongside worries about how families may feel when viewing their loved one during video calls.
French Participant (FP): ‘but if the patient had been in the prone position, I tried to find an angle that wouldn’t shock the family… and taking those picture, it stayed with you.’
Participants also described anxiety around access to technology from the family perspective. Inequalities in access to technology, especially with elderly patients, caused apprehension with staff.
UK Participant (UKP): ‘I really felt for the generations in the family. They were saying ‘I don’t know if I have got that type of phone, or I’ll need to wait until my granddaughter comes round.’ I was anxious about that. ’
Across the focus groups participants also described how the ‘non-technical’ skill of communicating with families became a ‘technical skill’. Organic conversations within ICU, which staff described as being important to delivering consistent care, were formalized into ‘factual’, prescribed telephone conversations:
Spanish Participant (SP): ‘I think the most horrible part from my perspective is that it became a very cold situation… if a patient dies, it is very painful and ugly, but when you see the family is when it hurts on a personal level. This by phone, because it is done as something more mechanical and cold. It was horrible, it was cold.’
Potential improvements in relation to virtual visiting were explored. Improvement activities were primarily focused on education and training needs of staff, alongside the provision of logistical requirements such as password access. Participants highlighted that training in undertaking virtual visiting required as much focus as ‘technical’ caring duties:
UKP: ‘There was nothing about how we were going to communicate with families. We were practicing proning, we were practicing all the kind of treatments and the things we were going to do, but there was no discussion about how we were going to communicate with families.’
Relationships and Rapport Establishment
Participants highlighted the crucial role which families play during ICU admission. A participant from Spain highlighted the importance of family relationships in care delivery:
SP: It is like cleaning a patient, maybe it is a burden, but in the end, it is for the wellbeing of the patient. The family is the human part that is not a burden. I think it is something necessary. Does it take time? Yes. Do we have to adapt to that? Yes. Are they sometimes difficult? Also, a lot. But it is necessary. Super-necessary.
During the initial stage of the COVID-19 pandemic, participants described a move from personalized family interactions to ‘transactional’ relationships. This loss of relationship and rapport had several negative consequences for clinicians including increased anxiety about the care family members were receiving and the creation of a ‘cold’ working environment:
FP: ‘It suddenly became very cold…it was very strange frankly, it was a bit dehumanizing…. it was a bit glacial.’
This change in relationship dynamic between staff and family members was also perceived to have a negative impact on care delivery. Participants described how care became depersonalized, with a loss of person-centered care:
UKP: ‘Even if someone had been sedated for a few weeks, I feel like you were able to get a really good picture of their homelife. Their families would bring up photographs and tell you stories about who they were. If that person woke up, you felt that you had a relationship with them because of their family. With COVID, it felt like everybody was just the same…You didn’t know who they were as people, it made it really difficult to be as empathetic and provide that side of care.’
The creation of tools to improve relationships and rapport between patients, families and staff were discussed. In addition to the introduction of virtual visitation, these included the use of electronic ‘what matters to you tools’ as well as individualised solutions such as personalized family messages and recordings:
UKP: ‘A family put up videos, recorded videos of themselves talking to the patient, just saying reassuring things, hearing familiar voices and playing music they were familiar with. They uploaded the video and you could have it playing at the bedspace continually… I remember thinking it was really good.’
Communication challenges
Across international settings, participants described the challenges which visiting restrictions brought to communication. One of the most challenging aspects was the difficulty in describing the clinical ’situation’ without family members present. Participants recounted that pre-pandemic, family members would often be at the bedside much of the day and could comprehend via formal and informal conversations, as well as through direct visualization, the progress, or lack of progress which a patient was making. As such, communication without families present was more difficult:
FP: ‘They (families) need to be informed and very often need to be reassured in a visible and concrete way…I wait for the family to be there to do a session so that the relative can see the evolution and the progress.’
The challenges with communication were perceived to have a direct impact of care delivery. Not having families present to provide commentary and support, made care delivery challenging. A physiotherapist described the negative impact of fragmented communication:
UKP: ‘When patients were fit enough to begin rehab, they tended to be at a much lower physical ability level. The global effect on the patient was huge….you had the psychological distress, there were huge chunks of their life missing. They didn’t have their family with them, they had no idea what was going on…Getting patients to engage without that sense of familiarity was an added challenge on top of their physical limitations.’
The contribution of family members in supporting communication and care during rehabilitation was also discussed within the context of delirium management:
SP: …most of them are super disorientated, agitated and very restless and I think that in those circumstances seeing a familiar face, a relative, always helps. Apart from the fact we were strangers…with the mask…I mean we were in disguise.’
Innovations and improvements to support communication were described. One area of innovation included the development of local ‘environment’ films. These included be pre-recorded films describing the ICU environment, alongside noises and equipment, which families could view, to allow contextualization and visualization of how care was being delivered. This was utilized in place of in-person visits to ICU where families would encounter the machines and technologies present in an ICU setting and thus facilitate improved communication during telephone conversations with staff.
UKP: ‘I think it would have been helpful if there was something we could have sent them electronically…this is the ventilator, this is the computer, this is the monitor, these are the infusion pumps…this is what to expect in ICU.
End of life care
The provision of end-of-life care was explored in-depth. In relation to the impact for staff, there was the need for a change in roles for clinicians. Participants across all disciplines acknowledged that this was particularly difficult for nursing staff; they described nurses had to adopt the role of family members in palliative situations, as relatives were unable to be present in the hospital.
FP: ‘Sometimes we would feel a certain transference. We would say ‘if it was someone in our family, wouldn’t we like that someone in the ward stayed with him or her as she passes away? Can’t we make that gesture at least?’.
Changes to the delivery of care ‘rituals’ during palliation were also described by participants. A participant from France spoke about some of these changes:
FP: ‘For palliative cases, we would open the doors to families, put a bed in, try to support them… and it is exactly the opposite, people are dying and we shut the doors, it is a bit bewildering, surprising to do the opposite. ’
A lack of standardization across visitation restrictions and inconsistent implementation locally, caused anxiety and frustration. In relation to improvement activities, staff described the importance of a consistent approach as being key to improving and delivering care:
SP: ‘That’s when our ethical dilemma begins: ‘okay I will let you in, but because it me, I assume responsibility of that, but tomorrow maybe not’’.
Staff wellbeing
Across theme generated, there was the manifestation of emotional exhaustion, emotional distress, and loss of job satisfaction for clinicians (Fig. 1).
Emotional exhaustion manifested in several ways; most notably staff described feelings of fatigue and being overwhelmed. A participant described the impact of the introduction of new communication strategies, to ensure that families had access to their loved one and the impact that this had on clinicians:
UKP: ‘….not only giving them a clinical update, but then trying to get hold of their email, trying to sort out technology. I just found it a bit overwhelming on top of the job we already do.’
The negative, longer-lasting emotional consequences that pandemic care provision and visiting restrictions had on staff wellbeing, alongside subsequent emotional distress, also emerged:
SP: ‘For me the satisfaction is that we get people better, although there are people who do not improve and suffer. But for me what has happened with the pandemic, the management of all that pain, I think many of us carry it. I have not been able to manage it.’
In relation to end of life care, staff also described feelings of guilt and frustration, which led to distress. Clinicians delivered heartbreaking news to families, in parallel with enforcing visiting restrictions:
UKP: ‘We were saying ‘yeah you can come up, but you are going to get exposed to COVID, which your loved one is going to die from, and you are going to have to isolate afterwards and not be able to get support from anybody.’’
Visitation restrictions and the consequences of these restrictions appeared to result in a loss of job satisfaction. A participant from France described how their role felt without the presence of families:
FP: ‘It was a feeling similar to working on a production line in a factory, without the contact of families…it was like a factory job.’