Challenges and guidance for implementing social distancing for COVID-19 in care homes: a mixed methods rapid review

Method

Introduction

For the second phase of the study, in-depth case studies were undertaken to examine how social distancing and isolation of residents were being implemented in CHs for older people. This involved individual interviews with CH staff, residents and family members, and the collection of social distancing and isolation policies and protocols and routinely collected CH data. When interviewing staff members, we asked about their experiences of social distancing and isolation and their understanding of resident experiences, based upon what residents had reported to them and their own observations during the pandemic. When interviewing residents and family members, we asked about their own specific experiences of social distancing and isolation. We also conducted focus groups with senior health and care leaders in England and national-level stakeholders to understand their experiences of developing and applying policy for CHs, and how they responded to the resulting challenges.

Individual interviews: method

Recruitment

For the second component of phase 2, we recruited and conducted two focus groups (FG1, FG2) with a purposive sample of external key informants (n = 13) beyond the CH sites. Participant characteristics (role or type of organisation worked for) are given in Chapter 7, ‘Introduction’. Potential participants were identified through study team discussions and through contact with people known to the study team. Potential participants were emailed to gauge their initial interest and then were invited to one of two focus group sessions. Focus group participants were given a participant information sheet and asked to complete a consent form and demographic information sheet. These participants had macro-level knowledge and experience relevant to the pandemic for the CH sector and included clinical leads, CH providers, organisations representing CH providers, the regulator, LA commissioning leads, Public Health England, Skills for Care, Social Care Institute for England, organisations representing residents and relatives, and Trade Union representation.

Data collection

The focus groups were conducted remotely using Microsoft Teams on 17 August 2021 (FG1) and 31 August 2021 (FG2), respectively, and each lasted 120 minutes. Each focus group was facilitated by a member or members of the study team; FG1 was facilitated by RA and AMR; SH facilitated FG2. Areas of discussion were agreed upon among members of the study team in advance. The focus group discussions centred on these areas principally, with facilitator discretion to explore themes and ideas as they emerged from the participants themselves. Facilitators ensured each participant was allowed the opportunity to contribute. The focus groups were audio-recorded with permission and transcribed. Notes were made by a designated note-maker from the research team.

Data analysis

Initial impressions of the focus groups were discussed at study team meetings. Data from the focus groups were woven into the initial informal processes of analysis and discussion alongside emerging findings from the study sites. SH and AMR read the transcripts and thematically analysed them, employing a method of familiarisation, identifying a thematic framework, and mapping and interpreting the data. 28 The themes were discussed with the broader study team and further refined.

Data collection

For each CH, the CH manager or designate was asked to collate and share with the researchers all documents relevant to social distancing and isolation policies and protocols (e.g. for managing new and returning residents, zoning and cohorting of residents, visiting, staff training and education, education for residents and families/friends, support for residents, families/friends and staff, and testing of residents and staff). They were also provided with a proforma to complete, which asked for routinely collected CH data (e.g. number of beds; resident occupancy pre- and during the pandemic; staffing data including absence, redeployment, employment of agency and bank staff; COVID-19 incidence rates; testing and vaccination rates (see NIHR project page for the proforma). The proforma was developed in collaboration with CH provider representatives and an expert social care researcher, with insight into the type of data regularly collected by CHs. All six CHs provided their social distancing and isolation policies to the research team. All six CHs also completed the proforma for routinely collected data, though a small number of questions remained incomplete for some CHs.

Data analysis

Analysis of the CH policy and protocol documents was undertaken to understand the requirements and guidance provided to staff to prevent and control the spread of infectious diseases and COVID-19. 29 Documents were read and reread by RH, and information collated around the key themes of social distancing, isolation, cohorting, zoning and other restrictions. The data were carefully considered and distilled focusing on similarities, differences, usefulness and completeness of the available guidance. Routinely collected CH data were entered into an Excel spreadsheet and descriptive summary statistics were used to describe quantitative data. Concurrent data collection and analysis informed decision-making about the need for further data and from which sources. Strategies to promote quality were embedded within our data analysis strategy. 30 This included engaging with stakeholders to check emerging findings and researcher interpretation.

Development of the toolkit (workshops)

Drawing on the findings of phases 1 and 2 and in collaboration with a broad sample of stakeholders (service users and public representatives, CH managers, nurses and carers, and leaders working in health and social care services and research), the research team developed a toolkit of evidence-informed guidance and resources to support social distancing and isolation for CH residents.

Internal layouts of care homes

Document characteristics

There was variation in the number of documents received from each home and in the level of detail provided about the policies and actions recommended. A summary of documents received is provided in Table 1.

Some CHs had a more significant number of policies each of which addressed one aspect of service provision, whereas others had a smaller number of lengthy documents that included guidance on all aspects of managing service provision during COVID-19. There was evidence that policy documents had been updated as the trajectory of COVID-19 progressed, and national government guidelines had changed. Some CHs had multiple versions of documents, whereas one CH updated the original policy document and highlighted the new changes as guidelines were revised. Either way, the content of the documents was repetitive at times and potentially challenging to navigate for busy CH staff. Some of the documents had links to embedded documents or online government guidance, which considerably increased the volume of material to read. There was considerable variation in the detail of the guidance provided by each CH with some providing very comprehensive, lengthy guidance and others much shorter guidance that gave a broad overview.

Social distancing

Social distancing was addressed by all CHs in at least one of their policy documents, although there was considerable variation in the detail of the guidance provided. One CH directed that social distance requirements should be followed but gave no further details. The other five CHs stipulated that 2 m was the required social distance to maintain between residents, staff and visitors at all times, for all activities and in all areas of the home including resident communal areas, dining areas, residents’ rooms, offices and gardens. There were a few exceptions, for example where residents were receiving essential care delivered by staff. For these activities, where maintaining the required social distance was not possible, staff were required to wear PPE including face masks. Policies for two homes discussed the different requirements of PPE depending on the activities being undertaken and whether it was possible to maintain the required social distance of 2 m. Residents were required to socially distance from other residents in all communal areas including the garden and two homes included the need for residents to be advised of this in one of their policy documents. However, one acknowledged that some residents might have difficulty in understanding and following this advice.

There was more guidance in the policy documents about managing social distancing during visits by external visitors, for example residents’ family members, health professionals, maintenance staff, entertainers and senior CH company staff. There was variation in the level of detail of guidance provided and in what aspects of the organisation of visits this guidance covered. For example, one CH gave very detailed guidance about arrangements for visiting entertainers including considering where they would be positioned to ensure at least 2 m social distance from residents, allowing additional space for singers as evidence suggests water droplets from breath carry further during singing. Generally, policies required that visitor access to the CH be carefully managed and supervised to minimise entry to resident communal areas, ensure social distancing and wear a face mask if this was not possible. Most visitors were required to do a lateral flow test (LFT) at the home before entry and policies in some homes stipulated that they must maintain social distancing while waiting for their result.

When family members of residents were allowed to visit, CH policies emphasised the requirement for social distancing. The policy for one home stated that visitors should be asked to verbally consent to abide by the terms and conditions of social distancing while in the home and grounds. The staff were required to set up the home environment to reinforce and maintain social distancing. For example, one home included detailed criteria for the internal visiting room including that it should have an external door, so the visitor did not have to walk through the communal areas of the CH to access it, a separate entrance for the resident, if possible, a substantial floor to ceiling Perspex screen and a hands-free wireless intercom system or mobile phone to facilitate communication during the visit. Other CH policies stated that for internal visits (in the designated visiting room or bedroom visits when allowed) chairs and tables should be positioned to maintain social distance with a screen in place; one home specified that this was also required for exceptional end-of-life (EoL) visits. One CH allowed relatives to remove their masks to aid communication if they remained behind the screen but encouraged them not to raise their voices. There were some differences in the policies about physical contact between resident and their relatives. Most CHs clearly stated that social distance must be always maintained, for example one home specified that relatives must not go behind the screen to touch, hug or kiss the resident. Another CH acknowledged that this would be difficult when visiting policies were revised to allow indoor visiting. Any initial breach of close contact between a resident and their family member should be gently pointed out and advised against. However, one CH guided that close contact should be kept to a minimum with hand-holding being acceptable, but hugging should be avoided and that this must be explained to the visitor. Another CH had a policy that relatives would be supported with physical contact such as hugging with the resident as long as IPC measures were in use.

Some CHs had policies that guided the actions of CH staff when travelling to work. Car sharing among staff was not recommended and alternative arrangements should be made if possible. If there is no alternative, one CH policy stated that 2 m social distance should be adhered to, that staff should car-share with the same colleagues for as short a journey as possible with no physical contact and the windows open for ventilation. They should consider the seating arrangements and try and face away from other passengers. One CH included that CH staff should maintain social distancing as per government guidance when not at work, for example in shops or on public transport.

Isolation

Isolation was addressed in at least one policy document for five of the six CHs. There was more consistency in the requirements for isolation among the CHs, although there was variation in the level of detail provided. Five CHs provided guidance about measures for resident isolation and four provided guidance for staff isolation.

One CH included guidance on how to prepare the CH to implement isolation measures including ensuring each resident bedroom could be used as an isolation room with access to PPE and handwashing facilities. Interestingly, a policy document provided by another home gave details of advising that, at the beginning of the pandemic, all residents needed to stay in their rooms to complete 14 days of isolation keeping away from other residents.

When residents were required to self-isolate all five CHs stipulated that this should be for 14 days (or longer if still symptomatic) and that residents should isolate in single bedrooms with en suite facilities or a designated commode. One home advised that if single room accommodation was not available, then residents should isolate in well-ventilated multioccupancy rooms with designated toilet facilities. The range of reasons stated for the need to self-isolate included the following:

• any residents who were symptomatic or tested positive for COVID-19

• residents who were newly admitted or transferred back to the CH from a hospital or A&E visit (unless treated in a designated COVID-19-free zone)

• residents who had been in contact with someone with possible/confirmed COVID-19

• clinically extremely vulnerable residents, assessed on a case-by-case basis as needing to shield.

One home provided details of updated guidance of isolation exemptions where many required conditions were met. This included a more detailed risk assessment of newly admitted residents who were transferring from another care facility or planned discharge from hospitals. These new residents who were fully vaccinated and had had no contact with someone COVID-19 positive could take part in an enhanced testing regimen including polymerase chain reaction test (PCR) and LFTs to determine the need to self-isolate. However, following emergency care, residents discharged from hospital were still required to self-isolate for 14 days. A resident who had tested positive for COVID-19 in the last 90 days, had completed their required period of isolation and had no new symptoms was not required to undergo testing. If a resident who was planned to be discharged from the hospital back to the CH or who was a new admission who had tested positive for COVID-19, the CH policy proposed careful consideration of whether there were sufficient staffing levels and availability of a single room before accepting the transfer. Where a resident was identified as a close contact with someone who had tested positive and was fully vaccinated, they did not need to self-isolate.

Where residents were required to self-isolate, one home specified the need to ensure that the resident was kept informed of the rationale for isolation, given the opportunity to ask questions and had an individualised care plan in place. This particular home provided detailed guidance on how to support the resident during isolation including updating the resident’s relatives daily, ensuring that they understand that visits were not recommended and could only happen in exceptional circumstances and authorised by managers, maintaining awareness of the resident’s mental health as they may become anxious and withdrawn and the need to seek further advice from managers and infection control teams if the resident was displaying behaviours that make isolation impossible, for example dementia and non-compliance. Additional support interventions included support from a companionship team (interactions limited to 15 minutes) who would provide an isolation box and support the resident to maintain contact with relatives via video calls. Where a resident refused to comply with isolation and endangered themselves or others, guidance required mental health or safeguarding assessment. If the resident had full capacity and continued to refuse to comply with isolation requirements, the CH manager could discharge the resident from the home. The guidance provided by other CHs was not so detailed but included some important additional activities, for example clearly marking the bedroom doors of residents, updating all heads of department within the home about which residents were isolating so all staff are aware and establishing a safe area for a resident with dementia who walks with purpose when keeping them in their bedrooms would not be possible even if that meant repurposing a communal area.

One CH had sheltered apartments located within the CH and guidance was that tenants must not enter the communal areas of the home site or village and staff were also required to contact them twice a day to check their well-being. Five of the CHs had policies that guided the need for staff to self-isolate. Staff were required to stay off work and self-isolate for 10 days if they had symptoms of COVID-19, a positive test, declined to test, contacted by track and trace, were required to quarantine after returning from a red list country (or amber list country if not vaccinated) or had a breach of PPE when providing personal care for asymptomatic or COVID-19-positive residents.

Restrictions

Restrictions were addressed in at least one policy document for all six homes. There was consistency in the guidance provided by homes although the detail varied considerably. Some of the documents submitted were older documents and the guidance about restrictions had subsequently been updated. Other documents had been updated but still included the older guidance, which reduced the clarity in places.

Resident restrictions

All CHs submitted guidance that restricted residents in some way. As discussed above, residents often had less freedom to move within the home, may have to move rooms if cohorting required this, had fewer visits from family and friends (discussed below), were unable to go to the hospital for routine appointments, their discharge home from the hospital if admitted may be delayed and new residents may experience delays in moving in. Strategies for staff to support residents to maintain regular communication with family and friends via telephone and virtual calls were provided in the policies of some CHs. Restrictions reduced as the pandemic progressed and vaccinations had been given.

Restrictions for families and friends

Most of the guidance in the documents concerned restrictions in visiting for families and friends. EoL visits were restricted in all homes, for example limited to 60 min, one or two immediate family members at a time, no children, wearing PPE and asymptomatic (visit not allowed if the visitor had symptoms). Four CHs included guidance about different types of visits including window, garden and drive-through visits before indoor visits were allowed in government guidelines and visits in designated visiting rooms/suites when indoor visits were allowed followed by visits in resident’s bedrooms when restrictions relaxed further. Two homes provided exceptionally detailed guidance about the different visits including, for example, ensuring residents had sufficient shade in the garden and wore sunscreen on warm days and advising visitors to avoid public transport on their journey. There were consistent requirements for visitors in all CHs even as restrictions began to be relaxed. These included the following:

• all visitors were required to be asymptomatic and have a negative LFT taken at the home before their visit

• all visits were time and frequency limited and had to be booked in advance

• there were a limited number of nominated visitors (initially one or two, to visit one at a time)

• no or little physical contact with their family member was allowed

• gifts had to be given to a member of staff to be wiped down

• visitors were not offered refreshments or able to use toilet facilities.

Although visitor restrictions relaxed in line with government guidelines, some CH policies continued to emphasise the need to risk-assess visits and rules varied according to this assessment. For example, although from July 2019 there were no national limits on the number of nominated visitors or how many can visit each day, the number of visits available in some of the CHs was dependent on how many could be accommodated each day with the time needed to support visitor testing and in some cases supervising the visit, the layout of the CH, length of visit and the need to ensure equity in visiting for all residents.

One CH provided guidance about residents leaving the home. Where these visits were considered high risk, for example emergency admissions to hospital, the resident should self-isolate on their return to the CH. However, other low-risk visits were supported without the need to isolate on return, for example spending time with family and friends, overnight stays in the family home, participating in community groups and volunteering and routine hospital appointments. During these visits, COVID-19 precautions, that is social distancing, handwashing and face masks, should be followed. All CHs had a policy that emphasised that in the event of an outbreak of COVID-19, that is two or more residents or staff testing positive then restrictions would increase.

Restrictions for care home staff

Restrictions for CH staff were addressed by at least one policy document for most CHs. Although the guidance was not comprehensive, it was clear that CH staff had considerably adapted the way they worked to provide care for residents and to implement and support the restrictions (and the effect of the restrictions) for residents and all visitors. For example, guidelines of several homes described the role of staff to reassure visitors, provide advice about communicating with masks on and, where assessed necessary, to supervise the visit. One home suggested that staff should advise visitors to dress and style their hair to help the resident recognise them and prepare the resident for a visit by showing them photographs of the person who is due to visit and talking to them about their relationship. The role of housekeepers had also altered because of changes to cleaning and hygiene protocols and the increased frequency of cleaning required including between visits. One home suggested the nomination of a COVID-19 co-ordinator for each shift to ensure adherence to infection control and COVID-19 policies, which should be discussed in staff supervision.

One home required that vulnerable staff should not provide care for symptomatic residents and should discuss redeployment or furlough with their line manager. Furthermore, this home required that staff adhere to PPE protocols and national lockdown guidance outside work. Failure to do so may result in disciplinary action or referral to safeguarding. Staff were required to participate in routine COVID-19 testing at the home, and the guidance in one home stipulated that the CH manager should ask to see the result for verification. All staff with a positive test or who were symptomatic were immediately sent home and required to do a PCR test. The use of agency staff was not recommended unless necessary and approved by the regional manager in one home.

Restrictions for healthcare professionals and other visitors

Restrictions for healthcare professionals and other visitors were addressed in at least one policy document in each CH, although with varying degrees of detail. All visits to each home were required to be booked in advance and approved by the home manager and visitors were required to complete a visitor questionnaire. In one home, the only unannounced visitors who would be allowed to enter were CQC inspectors and the police. All visitors were required to be asymptomatic and have evidence of a negative COVID-19 test when these were available. Multi-site CH staff, NHS and CQC staff take part in routine testing but are still required to show evidence of a negative test to be allowed to enter the home. Homes gave guidance for essential and non-essential visitors. Essential visitors included healthcare professionals providing urgent or emergency assessment and treatment, for example general practitioners (GPs), allied health professionals (AHPs), district nurses and property maintenance staff for emergency repairs. These occur as required even during an outbreak. Non-urgent GP and AHP consultations were required to be agreed at the local level by some homes, although they could be undertaken by audio or video-link if preferred. Two homes had a policy where a member of CH staff substituted for a visiting professional to perform an activity in situations where it was considered safer for the professional not to visit or when the professional was unable to visit. For example, a RN member of CH staff could provide care as part of the district nurse’s ongoing treatment plan when they had the required skill and when this was agreed with the district nurse and the CH manager. Similarly, another home had a policy where non-medical care staff could verify the expected death of a resident where the GP and home manager agreed on an approach of how to manage this.

Some routine visits by multisite centre home employees, and operational and support staff were supported to continue in some policy documents on the instruction from heads of department, although they could only visit one home in a day. One home specified the use of Microsoft Teams to support oversight of governance and management with some additional in-person visits at least every 3 months or more frequently if needed. Where onsite visits were undertaken, staff were required to change into uniform/alternative clothing on arrival and leave these clothes at the CH to be laundered (or, if necessary, taken home in an alginate bag and put in a washing machine immediately without removing them from the bag). However, if there was an outbreak during that time, one home had a policy that required these staff members to work exclusively at that home for 14 days until the outbreak was fully resolved. Property maintenance staff who work across several homes were required to wear full PPE and disposable overalls and have no contact with residents unless emergency work was required, and risk assessed by the home manager and facilities manager.

Non-essential visitors included hairdressers, entertainers and prospective customers/family show-rounds. These visits did not occur early on during the pandemic, although as restrictions relaxed, they were allowed to start with strict policies of COVID-19 testing, PPE and social distancing measures. In some CH policies, some visitors still have no access, for example community groups such as rotary clubs, schools and nurseries and other social groups.

Zoning and cohorting

In at least one of their policy documents, zoning was addressed by three and cohorting by five of the six CHs. There was significantly less guidance about these measures, particularly zoning, which was rarely mentioned. Isolation in a single room, where required, was seen as the best approach where practicable. However, in two CHs, guidance was given to cohort residents when there was an increase in the number of residents who needed to be isolated, single rooms were not available and when there was a reduction in the number of staff available to provide care. Cohorting residents, including newly admitted residents, where isolating in single rooms may impact their emotional well-being, was also considered by one home. Generally, cohorting or grouping residents in the same area of the home and ensuring that they have separate dining and activity facilities and, where possible, separate entry/exit doors were presented as a measure to minimise the risk of the spread of infection by limiting the movement of residents and staff between the different areas of the home. However, one home did caution that a group approach to infection control increased the risk of spread to residents with no symptoms.

Furthermore, the guidance stated that residents with suspected COVID-19 should not be cohorted with those with confirmed COVID-19 and neither should suspected or confirmed residents be cohorted next to those who are immunocompromised. When working with a cohort of residents, staff were expected to use PPE differently. The single-use policy no longer applied. It was acceptable to wear the same PPE for a session of care, which refers to a period of time when a care worker was undertaking duties in a specific care setting that ends when the healthcare worker leaves the care setting/exposure environment.

Guidance about cohorting also referred to grouping staff in the same location/area within the home, which should be planned as part of the scheduling. Staff were guided to form part of the cohort and, as far as possible, avoid movement between cohorts, including interacting with colleagues outside their cohort on breaks and other activities. In situations where this was not possible, guidance stipulated that staff should undertake good infection control and prevention measures by changing PPE and thoroughly washing hands.

There was some overlap or lack of clarity about how the terms zoning and cohorting were used in the documents. In some policies, residents who were isolating as a cohort were placed in a designated unit, floor or wing. One home acknowledged that residents and staff might find it challenging to understand cohorts. If so, it was suggested that forming safe zones, for example, the green zone or blue zone may indicate safe areas. Anything outside their own-coloured zone becomes higher risk so should be avoided or further IPC precautions should be undertaken. Similarly, high-risk infection hot spots, that is areas where staff and/or residents’ access from different cohorts (or zones) such as the reception area, main lounge and medication room (for staff), were called red zones. Everyone in the home was expected to be made fully aware of the red zones and the need to take extra precautions and reduce movement within these areas.

Overall impact on staff

Care home staff recounted the toll taken on their emotional and physical lives by working in CHs during the pandemic. This ranged from dealing with changed working routines and the burden of wearing PPE to feelings of fear for themselves, their families and those they cared for. Staff also talked to us of their discontent with how the UK government had handled the pandemic, especially regarding CHs.

Care home staff talked of the many ways that their day-to-day working lives had changed because of the COVID-19 pandemic: the most notable of which was having a far busier workload. Some staff felt their roles had become more ‘task-focused’, emphasising sanitising the CH, organising visitor appointments, taking temperatures and testing residents and visitors for COVID-19. They also talked frequently of the changes they had experienced around wearing additional PPE. Access to adequate PPE became a significant issue in the early stages of the pandemic. Staff did understand and appreciate the value of PPE during the pandemic; they trusted it and were grateful that it had allowed them to continue working safely. However, almost all staff talked of the great impact PPE requirements had upon them and their residents. For staff, these regulations involved the additional burden of changing their clothes and PPE regularly and wearing a mask and/or visor all day. Some staff felt they could not breathe properly when wearing a mask, while others talked about masks making them feel hot or developing spots on their face and sores around their ears. Staff also felt PPE made it more difficult for residents to recognise and communicate with staff, particularly those residents who were hard of hearing and relied upon lip-reading or those who had vision problems. Sometimes staff had to lift their mask briefly so that residents could understand what they were saying, while other times staff would stand across the room and talk ‘really loudly’ to residents or write down what they wanted to say on paper. It was felt that seeing staff in full PPE could be ‘scary’ for some residents, especially those with cognitive problems. It could also negatively impact the ability of residents to connect with staff and for the CH setting to feel like ‘home’:

‘The thing is of our profession we’re used to being quite emotive and, you know, speaking with our face and a large proportion of your face is blocked … I think also wearing the aprons and the gloves it’s like a clinical environment, so again, people living in the private sector, they’re not used to clinical environments. This is home’.

(Lead Nurse)

However, while problems with PPE were more prevalent at the start of the pandemic, many staff said that PPE had become ‘just a way of life now’ and that staff and residents were becoming more accustomed to masks. Thus, the extra work involved in communicating and working while wearing masks had become ‘baked in’ to the job’s demands. However, there was also some suggestion that staff roles had begun to become less task-focused as the pandemic progressed and that some rules and regulations had been relaxed over time. Staff expressed the hope that the country was ‘over the worst’ of the pandemic and that life in CHs could soon return to normal, though there was also an acceptance that COVID-19 restrictions may have to continue for some time.

The impact that the COVID-19 pandemic had upon CH staff must not be underestimated. One HCA described their experience as being an ‘emotional rollercoaster’, and several examples were highlighted of the sacrifices that staff had made and the traumas they had experienced. When information was limited at the start of the pandemic, the staff talked of how ‘frightening’ they found working with residents who were very poorly with this new, unknown virus. Many had also feared for their own safety at times, with concerns around catching the virus from residents and what would happen to them if they did:

‘… I tested positive at the beginning when it had first kind of come out … I was hysterical because I thought I’m going to die’.

(Lead Nurse)

Many staff also had fears for the safety of their families and some had chosen to separate themselves from their children and vulnerable relatives, which came at a high personal cost:

‘… I gave my daughter up for 7 weeks at the beginning of the pandemic, purely because I didn’t … want her to be in danger, I didn’t want my mum and dad to be in danger … I didn’t see her and I’ll always remember that day when she came to back to me and I think it’s just insight into what people have given up during this horrific time’.

(Deputy Manager)

‘For months and months and months, just on a personal level, me and my husband didn’t even give each other a hug and a kiss because … the environment I work in, I wanted to protect him, he wanted to protect me, you know, and that was like, “Oh my goodness, I can’t even give me husband a kiss’, you know”’.

(Lead Nurse)

In addition to their stresses at work, some CH staff were experiencing family illness and bereavements, partners’ job losses, broken marriages, cancelled healthcare treatment and financial worries as a direct consequence of the pandemic. There were reports of some staff expressing suicidal thoughts or self-harming, and one manager undertook a mental health first aid training course specifically to help their staff with their mental health. Other staff had been referred for professional psychological and physical health review:

‘… slowly, slowly that energy, I could feel it was fading away, and yeah, I ended up having a psychiatrist on Skype, and medication for depression and … a machine to monitor my heart, because of the stress’.

(Senior Nurse)

Many staff said they were mentally and physically tired and looked forward to a holiday or a break from work. Some CH staff had left employment due to their fears of working in CHs during the pandemic, and this was difficult for those who remained and perceived to be a significant loss to social care. Those who remained working throughout the pandemic were described as ‘brave’, with one manager stating they had ‘real admiration for them, because we did battle’. Some staff said they had struggled and admitted that they had considered leaving their role but continued to return to work each day to support their colleagues and residents:

‘… I used to go home some nights and I didn’t even talk. I used to go home, have a shower and go straight to bed because I was that tired and upset and it did make me … it made me feel quite sad and withdrawn. Then next day you just have to boost yourself back up again because you couldn’t let residents see you being like that’.

(HCA)

Many staff compared their own CHs to those that had been more badly impacted with infections and deaths from COVID-19 and felt relieved that their experiences were not as bad as they could have been. This was generally attributed to the interventions put in place in their CH and the hard work and dedication of their colleagues, and a sense that their CH had simply been ‘lucky’. There was an acknowledgement that even when staff had questioned the interventions and the sacrifices that residents, their families and staff had made, the ultimate reward was that their CH had remained safe:

‘… even in those difficult moments where you may question what you know, when you’re talking about what’s morally right and what’s, you know, safest and things like that, what we come back to is, well, it’s worked for us in the sense that from a COVID point of view we’ve managed to keep the residents, you know, relatively healthy … the processes that we put in place have obviously made a massive difference and it could have been very different if we hadn’t been doing it’.

(Nurse)

For many staff, the difficulties experienced during the COVID-19 pandemic were compounded by the government’s response to CHs. Some staff felt the government had abandoned them in the early phase of the pandemic and that CHs had not been considered or given appropriate guidance early enough in the process. One care assistant stated, ‘… the Government didn’t do nothing until people were dying’. Some staff criticised the ‘blanket approach’ to government guidance, which did not consider the many individual differences between CHs and CH residents. The guidance was often too long and complicated, with many different policies to consider. Others were confused by the rapidly changing rules for CHs set by the government and the fact that they found out about these rule changes at the same time as the rest of the population, which meant that homes did not have enough time to implement them appropriately:

‘… it seemed like every day there were different rules, government guidelines were changing, chopping and changing, we were expected to chop and change just the same’.

(Lead Nurse)

‘… the guidance will be published at 5 o’ clock on a Friday afternoon, and we’ve got, we’re sort of dealing with phone calls and hassles all over the weekend and we’re going, “I don’t know anything about this, what do you expect me to say?”’

(Deputy Manager)

One manager acknowledged that managers had to use their ‘own common sense and … knowledge’ when interpreting the government guidance, rather than simply follow it directly, while a Unit Lead talked of needing to select the parts of the guidance that were relevant to their individual setting:

‘… a lot of it was delving into the guidelines and actually working out, “Okay, what needs to be brought in?” Particularly with the early guidelines because it was all so over the top and a lot of it was written for acute places or places with live infections and it was sort of going, “Whoa, hang on a minute, we haven’t got anything here so at the moment we don’t need to change anything”’.

(Unit Lead)

Where applicable, managers also appreciated having the support of the senior management team in their larger CH organisation to help them interpret and implement government guidance. Several staff also talked of their passion and dedication for their role and how this had helped them get through the difficult times during the pandemic. Staff expressed great fondness and care for their residents and colleagues, often referring to those within the CH setting as a ‘family’. They were driven to provide their residents with the best possible experience during a challenging time. However, many also felt that CH staff had not been ‘recognised’ by the government (or by the population as a whole) in the same way as their NHS colleagues, which made them feel undervalued. One deputy manager said that working in a CH could sometimes be a ‘thankless job’, while others thought that the government could show they valued care workers by increasing their salaries:

‘… since we’ve been working in this pandemic they’ve been singing about the NHS, the NHS, the NHS. Us in the care home, we didn’t get nothing, nothing, and we worked so hard during this period. […] It’s only the NHS that was getting all the praises, they had the money, the increment, everything, we didn’t get nothing’.

(Care Assistant)

The following section highlights CH staff’s thoughts and experiences of the specific social distancing and isolation interventions put in place in their CHs during the COVID-19 pandemic.

Social distancing

Social distancing measures affected how staff could care for residents. They also changed how staff related to one another. This section discusses how staff experienced social distancing and the workload and logistical challenges they faced in maintaining it. As we demonstrate, staff were sceptical of the benefits or practicality of social distancing in CHs.

Social distancing measures involved residents being required to maintain a 2 m distance from each other. At first, some CHs tried to maintain social distancing by placing ‘Do not use’ signs on a proportion of their communal chairs, but this confused residents. Instead, staff felt it more appropriate to remove some chairs from communal areas to limit the number of people who could congregate together, or place coffee tables between chairs to ensure adequate spacing. However, limiting capacity in communal areas made it harder to organise usual events and activities and meant that fewer residents were able to participate, which staff found disheartening. Homes also limited the number of residents who could eat in the dining room together and ensured that dining room tables and chairs were appropriately spaced. This occasionally required CHs to turn communal lounges into extra dining spaces.

Care home staff were equally required to distance themselves from their colleagues socially, which led to staggered break times and limits on the number of staff allowed in break rooms. This involved reorganising rooms to create additional staff break spaces in some homes. Although staff and residents were also supposed to maintain a social distance from each other, many staff reported this was impossible to fulfil when providing personal care and that exceptions needed to be made at times:

‘… there’s no way on earth that I’m going to stay … 6 foot away from a resident at any given time, you know, it’s just impossible. We’ve got people who may need assistance when they need to eat or when they need a drink, or people who might need personal care. You can’t keep away from people’.

(Senior Support Worker)

A key implication of social distancing was its impact upon residents and the confusion these rules caused some of them. Several staff stated that residents found it hard to be distanced from their friends and could not understand why they could not sit closer to each other. This confusion was particularly notable for residents with dementia, who struggled to comprehend or remember social distancing rules, and some staff talked of the difficulties of ‘policing’ these restrictions while simultaneously trying to maintain a sense of ‘normality’ for their residents:

‘We try to move the chairs or the seatings where they are. They still come, they still push them back together, they want to be together. It’s really hard with them because, due to their dementia, they don’t understand what we’re trying to do. We try to explain, they say “Oh, yeah yeah”, but after 5 minutes you come back, they’ve done the same thing again’.

(Team Leader)

Social distancing measures also resulted in greater workload for staff, who were tasked with staying ‘vigilant’ around residents’ distances from each other and maintaining appropriate cleaning regimes when residents moved around the home. The importance of touch, for both residents and staff, was also regularly highlighted, with staff feeling that social distancing measures had denied many residents of this vital need. Many staff spoke of the critical role that hugs play in CHs. Residents wanted hugs from each other and from staff members, particularly if they were feeling low in mood or missing their families, and they could not understand why staff members would not hug them anymore. The fact that staff were able to have physical contact with residents while delivering personal care but could not hug them was also confusing:

‘… the residents found that hard. They’d say, “Well you’re washing and dressing me! You’re washing me, why can’t you just give me a hug?”’

(Manager)

Several staff described themselves as ‘tactile’ or ‘huggy’ people, who enjoyed hugging their residents and felt desperately sad at not being able to comfort them in their usual way. For staff who lived alone, receiving a hug could be of crucial importance to their own well-being and to have this opportunity for physical contact be denied had been particularly upsetting:

‘… sometimes that’s all you need, is a hug from somebody you work with. I mean, I go home to nobody, I live by myself, so sometimes a hug at work is probably all I need’.

(Senior HCA)

Many staff used the word ‘family’ to describe the relationships between staff and residents in CHs and talked of the loss of social interaction caused by social distancing measures. Care homes were perceived as a resident’s home rather than an institution, which made some staff question whether social distancing was appropriate, both practically and conceptually. For example, one CH was previously a residential property and was not purpose-built. As such, staff felt there was not the physical space for social distancing to be implemented successfully. Other homes were described as ‘lucky’ because they had several, large communal areas or wide corridors, making social distancing more achievable. One CH operated under a village model described as ‘designed for people to mix’. This involved staff and residents cooking and eating their meals together and residents from different households and apartments mixing freely. Such opportunities to socialise had been limited due to social distancing measures, leading to concerns about ‘institutionalising’ the village and causing it to lose its natural environment and family feel. This brought into question whether abiding by social distancing measures was always in the best interests of the residents. For instance, one staff participant told us of a woman with dementia who believed he was her husband and enjoyed holding hands with him while listening to music. This care worker faced the dilemma of whether to maintain social distancing rules with the resident or continue offering her the physical closeness that she needed. He concluded

‘I couldn’t turn round to that particular lady and say, “No, I can’t do that” … It’s not in her best interests for me to do that. So, again, swings and roundabouts, you’ve got to take into account the guidelines, but you’ve got to take into account people’s best interests as well’.

(Senior Support Worker)

In this scenario, the care worker felt that by being fastidious with changing his clothes and PPE and washing his hands regularly, he could safely provide the resident with the contact she needed and overlook the social distancing guidance. Indeed, other examples were provided of CHs either trying and failing to implement social distancing measures or choosing not to implement them entirely, due to the belief that they were impractical or unsuitable for CH environments. While most of the staff interviewed found social distancing measures challenging to implement, several felt that good support from management made the process easier. There were few positive outcomes associated with implementing social distancing in CHs, although one member of staff believed it had resulted in fewer normal winter bugs and the associated deaths:

‘… I would actually say we had a very, very easy winter because of social distancing because we didn’t get all the coughs and the colds come in and we didn’t have a lot of end of life because of that’.

(Deputy Manager)

Isolation

All staff talked about the isolation regulations that were put in place for CH residents. Initially, isolating residents were asked to stay in their rooms for 14 days, but government guidelines later changed to 10 days. All meals and care were delivered within the isolating resident’s private room. Staff entering the room had to maintain a social distance from residents and ensure their PPE was changed upon entering and leaving the room and disposed of appropriately. Some CHs used disposable plates, and cutlery for isolating residents, while others ensured that any crockery used in isolation was washed separately. There were many reasons why CH residents might be asked to isolate in their private bedroom. Still, across all CHs, residents were isolated if they displayed COVID-19 symptoms and were waiting for a test or had received a positive COVID-19 test result. Residents were also required to isolate when returning from hospitals or entering the CH as a new admission. This was to limit the likelihood of residents bringing COVID-19 into the CH, but both scenarios presented unexpected issues. For example, some staff felt that the requirement to isolate after attending hospital led to a reluctance in residents to attend hospital appointments and a disinclination from staff to refer residents for hospital care:

‘… some have chosen not to go to hospital appointments if they don’t feel it’s necessary … so they won’t get isolated … they like to be downstairs in activities, so they’ve chosen not to go to hospital because of the risk of being isolated’.

(Manager)

Many staff felt that new admissions to CHs had the most challenging experience with isolation regulations. This was because (1) the transition from home to CH was already difficult enough for people without the need to also isolate alone and (2) new residents had been unable to see the home as it usually operated, to participate in any of the activities, or to socialise with the other residents and staff. For these reasons, it was felt that new residents were often unhappier with their experience of moving to the CH, with some describing them as feeling ‘alienated’ from the others:

‘We had a couple in recently and he just said to me, he said, “My family have put me on this cruise, they told me that there was bingo and everything and I haven’t seen any of it. I don’t reckon much to this cruise”. So, it is difficult’.

(Senior HCA)

Some CHs also operated additional isolation procedures from those previously mentioned and staff talked of the specific challenges. For example, in the first national lockdown (Spring 2020), one CH isolated all residents in their private bedrooms as a precautionary measure, due to the lack of information available at this time. In a different home, operating under a village model, residents lived in a series of smaller households of 12 people and these households were treated as separate subgroups. When there was a confirmed case of COVID-19, the whole household was required to isolate but the rest of the village was not (for more information about isolating residents in subgroups, see the ‘Zoning and cohorting’ section). These isolation procedures had both positive and negative implications. The benefit was that fewer staff and residents were required to isolate during COVID-19 outbreaks and the negative being that this could result in a disparity between households. Another difficulty with this approach was that if several residents in a household caught COVID-19, then everyone within that household could remain in isolation for a long time:

‘… if you had one resident that had it and then we had another resident a few days later, the isolation period could go on and on and on. […]. So I know at one point we had a household, it could have been like 28 days or more that they were in isolation for, which is a long time’.

(Manager)

In a further CH, a senior management decision was made to open a ‘COVID ward’, where people hospitalised with COVID-19 could be discharged to recover. Everyone on this ward was required to isolate within their own rooms (locks were placed on bedroom doors) and rigorous infection control procedures and minimum staff contact rules were put in place. However, the decision to open this ward caused serious concern among many of the CH staff, including the CH manager, and some staff refused to work on this ward:

‘… the fear was spreading through the home … the first staff meeting we had I told the staff about COVID and the ward coming in, one of the staff stood up to me and said, “You’re going to kill all our residents.” That’s massive and she left. Because I would never kill anyone [Pause] That was a real … powerful statement to say in front of a whole staff team who are about to take on COVID’.

(Manager)

Yet despite these fears, the CH staff continued to work together and support each other, with many volunteering to work on the COVID ward and staff members drawing upon their previous experience of working with patients with MRSA or AIDS (acquired immunodeficiency syndrome) to help ensure that strict infection control measures were followed. Staff spoke of the pride they felt at continuing to care for residents on this ward, despite their fears, and hoped that they would be recognised for the bravery this required. Finally, some residents chose to stay within their own room even where there was no requirement for them to isolate. This was due to fears that they might contract COVID-19 if they left their room and felt safer self-isolating. Although staff tried to encourage these residents to leave their rooms, they acknowledged that this was the residents’ decision to make.

There were several negative repercussions of isolation requirements in CHs. Some staff felt that potential new residents had been deterred from moving into CHs because of the isolation requirements and one home was required to shut down a whole floor due to the lack of new admissions. Some CHs also felt restricted around whom they could accept as a new admission during the pandemic. Staff acknowledged that they only felt able to admit residents who were physically and mentally capable of isolating themselves and not those who were likely to ‘walk with purpose’. In addition to having financial implications for the CH, some staff also said they felt uncomfortable about making decisions on admission based upon residents’ ability to remain in isolation. The notion that isolation requirements went against the ethos of the CH environment was raised by a couple of CH managers, who worried that these interventions violated their caring instincts and ruined the ‘family’ feel of their homes. One deputy manager even expressed concerns that isolating residents felt like ‘institutional abuse’ or a violation of their human rights, but worried that there was no other safe alternative:

‘… we were having to say to these residents who like to come out of their room, “No, you’ve got to stay in your room”. To me, that was almost like institutional abuse, and I was like, “I need to safeguard the home” … so there was such a conflict of interest in terms of we’re doing this God awful thing but for their best, to keep them safe and it just didn’t … sit right with me because it was against every kind of nursing instinct and caring instinct that I’ve got in my body. But again, as all things, upon reflection, I dread to think what would have happened if we hadn’t have done that and if we don’t still do that for new people that are coming in’.

(Deputy Manager)

Some staff also stated that they could not force residents to stay in their rooms; therefore ‘adjustments’ sometimes had to be made, where this could be done safely:

‘… if the balcony was free, perhaps they could come out if there was nobody else about and sit on the balcony still isolating sort of thing. So, it was trying to look at different ways where we would isolate that person, but not close them off completely from everybody else’.

(Manager)

When residents were asked to isolate within their rooms, it was acknowledged that this was a difficult task for them, particularly when they had cognitive impairment or did not understand what was required of them. Staff had to repeatedly remind and explain to these residents why they were needed to stay in their bedroom, and they described this as challenging and extra workload. There was additional workload for staff even when residents did remain in their rooms, as they talked of the time implications of taking meals and beverages into individual bedrooms as opposed to serving them all in the dining room, or ‘finding time to sit with them’ individually rather than sitting as a group in the lounge. Staff also had to regularly check on isolating residents to ensure they had not fallen and been unable to press their buzzers. Staff talked of the many negative implications that isolation could have on residents, including feelings of boredom, frustration, confusion and distress. Again, this was most prominent for those residents with dementia or cognitive impairment. Staff told us that some residents felt that isolation was a punishment and there were reports of residents ‘screaming’ or shouting out in exasperation, ‘Why can I not come out? I don’t want to be in this room’. Isolation affected residents’ mood and well-being, and they missed seeing their friends and expressed sorrow at the loss of their usual routines. Isolation also had severe, long-term impacts on a small number of residents, leading to physical decline or disturbing hallucinations:

‘One lady, she’s got Alzheimer’s and the isolation where they were all in their rooms and couldn’t go out, she’s forgotten how to stand up so now she is transferred by a hoist, which is really sad because she was walking before the pandemic’.

(Senior Care Lead)

Some residents also showed reluctance to come out of their rooms when their isolation period was over, as being in their rooms had become their new ‘norm’. Furthermore, staff acknowledged that isolation regulations could be very difficult for family members, who found it upsetting to know that their loved ones remained alone in their rooms. Yet, despite all these difficulties, there was an acknowledgement from some staff that isolating residents could be a successful way of controlling the spread of COVID-19:

‘… we did have someone come in with COVID and … touch wood that’s been our only case to date and we’ve gone a year, you know, we’ve gone a year now with that. So, I do believe our isolation works really well to protect the home and our residents and our staff’.

(Manager)

Staff highlighted several factors that could make isolation less difficult for residents. The most important of them was ensuring that they were suitably entertained with regular (socially distanced) visits from staff and various resources to occupy their time. Some CHs had created ‘activity boxes’ for isolating residents, including activities such as crosswords, colouring books, jigsaws, games and reading material. Some CHs gave isolating residents a radio, Echo or Alexa so that they could listen to music; an iPad or tablet so that they could contact loved ones (see ‘Visitor restrictions’ section); a TV to keep them entertained; and exercise equipment such as stretch bands, to keep active. All CHs also acknowledged the importance of staff sitting with the residents regularly to help prevent loneliness and playing games with them or providing ‘pamper sessions’ to improve their well-being:

‘… they can isolate, but they don’t have to feel isolated’.

(Senior Support Worker)

Staff did acknowledge, however, the importance of ensuring that any activities were tailored to the individual needs and interests of the residents and noted that some individuals were not interested in participating in such pastimes. Maintaining good communication with residents throughout their period of isolation was also identified as of crucial importance, with staff comforting residents, explaining the reasons why they needed to isolate and encouraging them to persevere. Some staff talked of the importance of maintaining a sense of humour and continuing to ‘banter’ with the residents to raise their spirits:

‘… the laughter and the sheer joy from everyone, that’s what I mean, it’s like friends, we’re a professional friendship, you know … you can’t buy that kind of care, you can’t buy that kind of communication, there’s no money in the world that could buy that. And that’s what you hold so dear to you and what we all needed to maintain at that time, and I think we did it. We did it’.

(Deputy Manager)

Having good teamwork and receiving support from managers and colleagues also made the experience of implementing isolation interventions easier for staff. Few staff talked of the isolation requirements for staff members, but those who did say that staff had to isolate when they were showing symptoms of COVID-19, had tested positive for COVID-19 or when they had returned from travelling abroad. Regular testing of CH staff had made it easier for them to identify when they needed to self-isolate.

Staff frequently talked about a range of other interventions, which had also been implemented within their CHs to prevent and control the spread of COVID-19. These are discussed below.

Restrictions

Staff talked in detail about a variety of restrictions placed upon CH residents, staff, family members and other professionals during the COVID-19 pandemic. Much of this was about changes to visiting. Staff talked to us about the consequences of severely restricted or controlled visiting both on themselves and others. We look at some of these restrictions in turn.

Restrictions on residents: trips outside the care home and mealtimes

Several different resident restrictions were implemented in CHs, but from the perspective of those staff interviewed, restrictions around residents leaving the CH and changes to the way food was prepared and delivered had made the most significant impact. A major restriction within CHs was to prevent residents from leaving the home. This included preventing them from visiting shops or other community settings and stopping them from using communal facilities within the CH, such as the gym or hairdresser. This was distressing for many residents, for whom such outings and facilities played an essential role in their daily life; we explore residents’ own experiences in more detail in Chapter 6. It was equally disappointing for staff, who also valued these opportunities for interaction with their residents:

‘… with my residents, we could go out before, we could go out for a pub lunch, we could go to a farm, you know, but we couldn’t do this anymore … That affects them, it affects us as well. We are locked in an environment for a month, a year, without seeing or doing things that we’re supposed to do, things that we like to do. And that was … so upsetting, that we couldn’t provide the best service that we could because of the pandemic’.

(HCA)

Being prevented from leaving the CH had many negative implications for residents’ mental health and well-being, with staff reporting that residents became ‘withdrawn’ and ‘introverted’. Even though many activities remained in place inside the CH, staff told us that residents missed their interactions with friends from outside (as well as friends from other households or on different floors of the home, whom they were no longer allowed to see). Some lost their enthusiasm to participate in activities:

‘… they don’t want to do anything … you ask some of them nicely, “Shall we do some activities?”, and they don’t want to, “I don’t want to play dominoes, I don’t want to do this”, because they’re getting that depressed, they’re getting very depressed’.

(Nurse)

In some instances, staff found that restrictions on leaving the home were more manageable for people with dementia (or those who did not regularly leave the CH before the COVID-19 pandemic), to accept. In comparison, staff told us that those residents who were previously active and enjoyed a busy social life outside of the home experienced the impact of these restrictions more severely (see Chapter 6 for residents’ own narration of this). Indeed, one resident complained to their social worker about the CH and the unwillingness of staff to let her continue visiting local shops and supermarkets. Several staff also commented on the effect that restricting residents from leaving the CH had on their physical health; namely their ability to get sufficient physical exercise. This was particularly notable in those CHs where residents did not have access to a garden:

‘For the whole year they’ve just been stuck in this space, in this one room. And it has impacted on … the walking side because they’re not getting the exercise on their legs. Their muscle strength is deteriorating because all they want to do is sit down all day’.

(Support Worker)

Staff reported that residents were thankful that restrictions had started to ease, and facilities were beginning to reopen for them again, albeit in a different way, such as the requirement to pre-book the use of the gym. Some felt that residents had become more appreciative of the facilities they had in the home and were now more inclined to use them than they had been pre-pandemic:

‘… even the gym, they’re quite happy. They’ve never bothered going, but now they think, “Oh, it’s a different room to go in, I’ve not been in this room before”, and they’ll go to there, yeah, because it’s a completely different room. […]. They’re even excited to go in the lift sometimes, they’ve not been in there for a whole year and, “Ooh, I’ve gone in a lift’, you know”’.

(Support Worker)

A second significant restriction for CH residents involved changing how their food was cooked and served. For example, in one CH, all meals had previously been freshly cooked in the household, so that residents could participate in preparing and cooking their own meals. This was initially stopped during the pandemic, with food cooked offsite and delivered to each household individually. Consequently, a couple of staff at this home had noticed that residents were not eating as well as they previously had, ‘because they weren’t getting the smells from the cooking’. Another CH was proud of their ‘fine dining’ facilities for residents and felt that the removal of this (due to the cleaning and sanitisation requirements associated with it) had been detrimental to the residents’ experience and in opposition to the ethos of the home:

‘You know, when you go to a restaurant and you see your knife, fork and spoon ready for you and you have a nice, you know, plant in the middle of the table and maybe like a candle and your salt and your pepper and your sauces, that all had to go, you know. So you’re just left there with bare tables and … it’s like a prison. It’s like a prison, the bare minimum, and that to us is totally against our nursing home culture because it’s not a prison, it’s their home and it’s just got all took away’.

(Deputy Manager)

Across several CHs, changes had also been made to where residents ate their meals, with examples provided of residents eating in their bedrooms or communal lounges being turned into temporary dining rooms to allow additional space for social distancing requirements. In some homes, such changes had been successful. For example, some ‘younger residents’ enjoyed eating their meals in the lounge away from the older residents. However, others did not appreciate the changes to their dining arrangements and found eating alone isolating, which could affect their appetite. These changes to where residents could eat their meals also had direct consequences on staff workloads, either because they needed to spend time with each resident who was eating alone or because they needed to spend more time cleaning and sanitising rooms and equipment where residents were eating together.

Finally, as many group activities were still ongoing within CHs throughout most of the pandemic (excluding periods of isolation), restrictions on group activities were believed to have had a lesser impact on residents. Indeed, many staff talked of the innovative ways in which they delivered new or alternative activities to their residents, such as ‘indoor gardening’ sessions for those who could not get outside, small group cake-making, yoga, karaoke, socially distanced bingo and quizzes, letter writing to local school children and online sessions connecting residents with local churches and community groups:

‘… we’ve had whale of a time … we have a right singsong. We’ve got a disco ball there that we put on, turn all the lights off, disco ball and we have a party down there most days’.

(Senior HCA)

Restrictions for families and friends

Families and friends had been restricted from entering all CHs early in the COVID-19 pandemic, and all staff discussed the implications of these restrictions. During the first lockdown, the government announced that there could be no visits from family and friends in any CHs (though some homes chose to instigate these restrictions before they became mandated by the government), and this was a considerable shock requiring major adjustments for residents, families and staff. In many instances, CH staff became a target of anger and frustration from residents and their family members, who could not comprehend that they were prevented from seeing each other. We explore family members’ own experiences of COVID-19-related measures and restrictions in Chapter 6. Here, we relate how staff talked about the impact on families and residents.

Staff felt that some residents blamed them for these restrictions and perceived them to be ‘bad people’, who were ‘keeping them here under duress’. Similarly, some families expressed extreme anger towards staff, and although staff could empathise with family members, these experiences could be frightening and upsetting for them. One staff member even said they had considered calling the police when relatives had become particularly confrontational and aggressive:

‘… we’ve had the relatives who’ve been very angry, they’ve turned up at the door of a care home demanding to be let in … and they need to see their loved one, demanding and shouting at the team’.

(Manager)

Staff reported how the introduction of restrictions had been distressing for many residents, and staff talked to us about how such conversations were difficult and affected staff too:

‘… it was very hard for one of my residents. Her daughter, she comes every week or twice a week, but when we tell them, “Sorry, no family members are allowed”, and she said, “Oh, if I don’t see my daughter I’m going to die”. “Oh”, I said, you know, those words are really heart-breaking for us as well’.

(Activities Co-ordinator)

Staff recognised some of the anxieties residents themselves felt (and which we explore in more detail in Chapter 6). They reported that residents told them they had been ‘abandoned’ or that their relatives chose not to visit them. Staff had had upsetting conversations with residents who expressed pain and anger towards their families. Missing ones’ family had negative implications for residents’ mood and mental health: staff noted that some residents were sleeping more throughout the day, while others had begun ‘talking to themselves because they’ve got no one … to talk to’. Other residents’ eating habits had changed because of their depression or because their family had not been there to support and encourage them to eat, and as such they had started to lose weight. Some staff suggested that visitor restrictions had been easier for residents with dementia, because they were less likely to remember that they had not seen their relatives. In contrast, the experience had been more upsetting for those who were aware of the restrictions:

‘… I know it sounds awful but sometimes people living with dementia who can’t remember their family are in their own world and you kind of think, I think I’d prefer to be in your world right now because they’re happy, they’re content and they don’t know any different and how awful is that. How awful is it to say that somebody who lacks mental capacity is in a better state of play’.

(Deputy Manager)

Indeed, there was the suggestion that some residents with dementia had found it more upsetting when family visits were reintroduced than they had when visitor restrictions had been in place:

‘We have noticed with several that now the visits are starting back up again we’ve got more behaviours and more distress behaviour than we’ve had for the last year because they’ve just been so comfortable and settled with what’s happened’.

(Deputy Manager)

Staff also noted that deeper friendships had grown between residents and staff during periods of visitor restrictions. Staff had learnt more about their residents and their individual likes and needs. Some staff had told residents that they were their ‘family’ during the period of restrictions, and this had offered residents some comfort:

‘… we used to sit with them and say, “Look, here you go, we are a big family here, you’ve got family outside but you’re our family now, you’re our family, we’re here for you if you need anything”’.

(Senior Care Worker)

Some staff felt that the restrictions were even more distressing for family members than for residents, with many relatives feeling concerned about their loved ones and anxious about what they were hearing on the news around COVID-19 in CHs. There were reports of ‘a lot of stress and a lot of worry’ from relatives, as well as sadness and ‘missing happy times’. Some relatives experienced difficulties with the ‘lack of control’ they had over the situation, particularly those who regularly helped residents with personal care and many expressed guilt that they could no longer be there for their loved one in the ways they previously had:

‘… I was talking to a family member the other day and he was saying that “I feel like the staff have taken on my role”, and he said, “And I felt really bad and really guilty about that” […] and he said, “I was worried that I’d let her down and that I’d failed her”’.

(Nurse)

Staff, therefore, had to navigate this complex emotional terrain of the guilt, envy and loss experienced by family members. Family restrictions were particularly difficult in EoL situations, where family members could not see their relatives before they died. Some staff also reported significant trauma associated with residents being prevented from having their loved ones around them at the time of their death:

‘… and people died, with no family, just us. As a nurse, as a human being, and also somebody who’s lost their own father, I found that really, really hard [gets upset]. I had many nights I couldn’t sleep, “Had I done the right thing?” I had, I’d managed to keep COVID out of the home, but that’s hard’.

(Manager)

‘There was a gentleman that was passing away, that his brothers asked me not to let him die on his own. So that’s what I did, and sat with him and spoke to him […] it’s only now talking about it that I actually, like, realise it as well. It kind of gets locked away’.

(Lead Nurse)

Although all CHs had allowed relatives to visit their dying loved ones during at least some parts of the pandemic, these visits had still had restrictions in place, such as a screen between the resident and family; restrictions on touching; the use of masks and other PPE equipment; and limits on the number of family members who could visit:

‘… there’s no sitting there holding their hand and the usual stuff that they would do, and it is, it is a bit heart breaking to watch, you know, a socially distanced end-of-life visit … it just seems so impersonal, so uncaring, even though, you know, it’s the guidelines, it’s the law … it’s just not right at all’.

(Senior Care Assistant)

Staff were very concerned about the welfare of relatives, particularly those who were elderly themselves. They also expressed their own guilt around not being able to revoke the visitor restrictions or ease the pains experienced by family members. Preventing residents from seeing their relatives went against the caring instincts of staff and they felt distressed at seeing relatives so upset and being unable to help them as ‘we can’t break the protocols’:

‘… I’ve hated every single moment of it when I’ve had to say, “You can’t come in” […] and I’ve wanted nothing more than to just open the door and go, “Go on, go and see your mum.” I really, really have’.

(Deputy Manager)

However, staff felt that, overall, most relatives did understand why the restrictions were in place and were supportive and grateful to staff for caring for their loved ones in their absence. Many also believed that these restrictions had been beneficial for controlling the spread of COVID-19 in the CH. Finally, staff reported that visitor restrictions had significantly increased their workload. Many staff talked about considerable increases in the number of telephone calls CHs were getting from relatives every day and the impact this had upon them, as well as the additional time they had to spend feeding back updates on residents to their relatives:

‘… the phone calls, even at home I would get home and I could hear the phone call ringing, and I had insomnia for weeks, for weeks insomnia, I couldn’t sleep … they are not working in these environments, they do not understand the pressure, to do medication, to do safe medication administration … it is a high amount of pressure to have that, and the phone ringing constantly distracting you’.

(Senior Nurse)

Extra staff time was also spent supporting residents, explaining why they could not see their loved ones and ensuring they were well entertained in their relatives’ absence. While these visitor restrictions were in place, all CHs in this study had attempted to help residents maintain contact with their families using telephone and video-calling (using Skype or Zoom etc.), and this had been incredibly beneficial for many residents and helped raise their morale. However, telephone or video calls were not suitable for all residents. Those who had dementia, vision/hearing problems or those who were not comfortable using technology had struggled to experience the benefit. Similarly, not all staff members and relatives felt comfortable using new technology, not all CHs had good Wi-Fi access, and some family members did not have their own telephone or computer on which to receive the calls. Furthermore, many residents needed assistance in using this technology and required staff to stay with them when making their calls, which meant extra workload for staff and a lack of privacy for residents and families during their conversations. Some CHs also had to buy additional equipment to accommodate these calls, which had financial implications.

Care homes also initiated a variety of additional creative ways for residents to see their family members. These included ‘drive-by’ visits, ‘window visits’ and outdoor visiting ‘pods’. One CH installed a new telephone line purely for family enquiries, which eased much of the congestion on the main phone line. Others made internal changes to their buildings, such as installing glass screens in visitor rooms and increasing the number of entrances and exits. However, even when families were able to enter the CHs again, several visiting restrictions remained in place, such as limits on the number of visitors, and the duration and regularity of visits. Family members had to pre-book appointment times and were required to be tested for COVID-19 before entering the CH. There were discrepancies reported around whether residents and families were able to hug each other during visits, with some staff saying this was now permitted and others saying it was not. All these restrictions added a layer of time and complexity to the visiting arrangements and increased staff workload. Furthermore, a few examples were provided of families refusing to abide by the restrictions, meaning that staff felt they needed to ‘police’ some of the visits. Staff also felt uncomfortable and upset that they needed to address issues of breaking restriction rules with family members.

Several factors were identified by staff as helping to make the difficult period of visitor restrictions more bearable for themselves, their residents and family members. These included maintaining good communication with relatives (including holding regular online meetings for families where they could air their concerns) and receiving good support and guidance at a senior management/company level. Having a building layout where all bedrooms had exterior doors was also felt to be beneficial, as this allowed family members to visit their relatives without entering any other part of the CH.

Restrictions for care home staff (e.g. changes to working patterns, shifts and rotas)

Restrictions for CH staff were discussed less frequently than those for residents and families. A few staff members said their working arrangements had not noticeably changed because of the COVID-19 pandemic. However, other staff were able to identify several ways in which their working lives had changed. For example, some participants reported changes to shift lengths and rota patterns in almost all CHs, with staff working longer shifts or overtime, being on ‘standby’ or working through their annual leave. Managers had to plan rotas carefully, due to staffing issues associated with increased staff sickness, ‘shielding’ staff, staff leaving their roles due to fears of working during the pandemic or staff being furloughed. They also had to consider the individual circumstances of their staff (such as childcare issues, which might prevent them from working certain hours). Managers’ workloads further increased due to the regular phone calls and complaints from residents’ families and increased communication with external organisations such as the CQC, who regularly phoned for updates. Indeed, in some homes, managerial staff said they had (or had been prepared) to stay the night in the CH should the need arise:

‘… we all packed our bags. I’ve still got it in the boot of my car, I’ve got a blow-up bed and an overnight bag with about 4 days’ worth of supplies just in case, because you could never anticipate what could happen’.

(Deputy Manager)

Several examples were provided of staff ‘upskilling’, switching roles (e.g. moving from the role of ‘well-being co-ordinator’ to ‘care worker’), or taking on aspects of another’s role during the pandemic. Indeed, one nurse described the situation in CHs as being ‘all hands on deck’:

‘I had to upskill the team, because if staff suddenly went ill and I’ve got no team who would care for my residents? […] admin, housekeepers, maintenance were all upskilled to be able to go on floors, serve meals, give drinks, support us getting residents in and out of bed’.

(Manager)

In a few instances, staff had been restricted to working on one floor/household or working with the same small cohort of staff and residents. While these arrangements were believed to help limit the spread of COVID-19, some staff found these restrictions difficult, as they inhibited their ability to communicate more widely with residents and other staff. In one home, staff were asked to only work within that setting and to not work shifts elsewhere. The manager at this home said staff were contented with this restriction, as they felt it helped protect their own safety, and the safety of the other staff and residents. The manager also ensured staff who would ordinarily work elsewhere were given extra shifts in the home so that they did not suffer financially. The use of agency staff differed across CHs, with one manager stating that they stopped using agency staff altogether while others said they did employ agency staff when there were staffing constraints. However, this was implemented in a limited way (e.g. only using one agency, ensuring agency staff did not work within any other CHs and that they were regularly tested for COVID-19). One CH had to reduce the number of staff working due to the closure of one floor in the home, but another had to recruit additional staff, which had financial implications for the home.

Despite the restrictions placed upon staff, several people were able to identify positive outcomes of their experience of working during the pandemic. There was a suggestion that the experience had brought staff ‘closer together’, had helped encourage better team working and gave staff a greater ‘appreciation’ of the roles of their colleagues. However, there was also a suggestion that adapting to new ways of working during the pandemic had been ‘exhausting’ for some staff. An important factor that helped during periods of staff restrictions was receiving good managerial support. Some staff spoke effusively around their gratitude for their CH managers, whom they described as supportive, available and willing to have open and honest conversations with their staff, listening to their suggestions and taking on board their feedback. Good managers were also seen to boost the morale of their staff, give them the motivation to continue with their work during difficult periods and reward them with little treats. Having a manager who encouraged staff to take regular breaks while working (something that was not always possible due to heightened workloads) and to use their annual leave where possible was also appreciated.

Restrictions for healthcare professionals and other visitors

In addition to restricting families and friends from entering CHs, restrictions were extended to all external healthcare and non-healthcare professionals and other visitors. This prevented anyone who would ordinarily go into a CH from entering, including GPs, physiotherapists, occupational therapists, mental health teams, social workers, clergy members, hairdressers, entertainers, activity staff and school children. These restrictions on external visitors led to additional workloads for CH staff:

‘…. now we’re hairdressers, we’re counsellors, we’re advocates, we’re social workers, we’re doctors, you know, everything, we’re everything’.

(Lead Nurse)

Some staff reported that district nurses could still enter the home (though there was sometimes a long wait for such services), and some said that GPs would still visit in person in the case of an emergency. However, communication with all external visitors was conducted online or over the telephone in most cases. Staff believed the greatest impact came from communicating with healthcare professionals remotely, particularly GPs, as some questioned whether healthcare assessments could be successfully carried out online. A few staff said that extra pressure had been placed upon them by not having GPs and other healthcare professionals visit the home in person. They felt this resulted in them having to make quick clinical decisions about a resident or ensuring that they provided external healthcare professionals with all the necessary information about a resident to make an informed decision. This could be worrying for some staff, who could begin to doubt their ability to give information appropriately or ask the right questions. Others felt they were being asked to complete tasks ordinarily undertaken by other healthcare professionals, which they were unqualified to do, and this made them feel nervous and unsupported:

‘… we didn’t know if we were doing things wrong with, like, the exercises and stuff from the OT perspective, and even for like SALT reviews, we’re having to monitor them when we ain’t professional in that background. So, it was quite scary, but yeah, we managed it’.

(Deputy Manager)

However, this deputy manager believed that CH nurses were well placed to work in this way, as they knew their residents well and were able to identify when they were becoming unwell. They also believed CH nurses were accustomed to working independently in the community and were comfortable with trusting their instincts. There were few examples of the implications of these restrictions on residents, though one manager did highlight a couple of residents who had been negatively affected by delays in their care because of healthcare visitor restrictions:

‘I think one of our residents had a really bad toe … under the normal circumstances, a GP would have looked at that, referred him to the foot clinic or a podiatrist and they would have probably removed the nail. But he had to go through sort of like weeks and weeks of pain until the toenail actually fell off, you know. That was one of them but there’s been other things as well. Like a pressure sore, you know, it’s tiny and we’re looking after it but then all of a sudden it sort of like becomes red, so the district nurses, you don’t see them for absolutely ages and then it’s too late and then that pressure sore then becomes … a graded pressure sore’.

(Manager)

Slowly, such restrictions were beginning to be eased within CHs, with healthcare professionals being able to re-enter the homes again. However, there were reports that some healthcare professionals had still not returned to face-to-face appointments, which was disappointing and confusing to some CH staff.

Zoning and cohorting

One CH highlighted an example of ‘zoning’ by treating each household as a separate subgroup. When there was a confirmed case of COVID-19, that resident’s whole household was required to isolate, but the rest of the village was not. Interviewees provided a few other examples of zoning. One care assistant said they disagreed with the idea of zoning residents if this involved moving them on to different floors, as the residents would find this ‘destabilising’. One deputy manager said they had discussed and prepared for the possibility of creating a unit specifically for residents with COVID-19. However, staff had discord about these plans, with some individuals stating they would refuse to work on this unit. Fortunately, these plans did not have to be initiated, as none of the residents contracted COVID-19. One CH did not ‘zone’ their residents but did use a form of cohorting, whereby residents were clustered into small groups and allocated one staff member per shift to attend to their care needs. The reasoning for this was limiting the number of contacts each resident had each day to help reduce ‘cross-contamination’. One senior HCA, however, expressed concerns that while this approach could be helpful in the pandemic, it could have negative repercussions in the longer term:

‘… I do feel that doing it that system, certain carers don’t get to care for other residents, they’re not getting the full view. So when this pandemic is over and we may go back to our old way … they’re not going to know what their care needs are, so it’s going to be like they’re learning from scratch again, a whole new bunch of residents. It’s really going to be difficult because they’ve only concentrated on certain residents while they’ve been on shift, which has been good from the pandemic point of view, but from a care point of view they’ve isolated themselves from all of the other residents’.

(Senior HCA)

Surveillance: the effects of regular testing

Some staff talked about the surveillance measures implemented within CHs during the COVID-19 outbreak. These were the same as infection control measures implemented for other infectious diseases and included being aware of the signs and symptoms of COVID-19 in residents and staff. At the start of the pandemic, residents had daily checks on their temperature and oxygen saturation and regular observations for any COVID-19 symptoms (e.g. cough). Any concerns were quickly escalated to the CH manager and GP. Some staff also said they checked their temperature before starting each shift. However, the implementation of new testing regimes had been beneficial for CH staff in identifying cases of COVID-19 more rapidly. Following government guidance, CH staff were now taking regular lateral flow, and PCR tests and residents were also tested regularly (usually monthly) and isolated when positive results were returned. Visitors were also required to take LFTs at the CH before entering the premises. This had proved significant in some instances, where visitors with a positive test result had been identified and turned away before entering the home. Some staff said the testing requirements made them feel less anxious about going to work and had made the atmosphere in the CHs more relaxed:

‘… it gives you that peace of mind that yes you’re safe, everyone is safe, you can carry on with your job’.

(Senior Nurse)

However, the testing process had also resulted in increased workload for staff, as undertaking the testing and then recording the results of these tests onto the computer system had been added as an additional task in their weekly routines. For example, some of those administering the tests spoke of having to ‘chase’ staff to get their tests done. All visitors also had to take a LFT at the CH and then wait for 30 minutes outside before entering the premises, and staff said this added a layer of complexity to their workload. For example, one senior HCA said they had to set a 30-minute alarm after each test had been completed to remind them to go and tell the visitor if they could enter the home. They, therefore, stated, ‘I’ve got alarms going off all day in my little room!’. Several staff also commented that they needed to cope with the anger and frustration of some visitors, who could not understand why they had to wait for 30 minutes before they were allowed to enter the home. Some CHs had secured infection control funding, which had enabled them to recruit a member of staff to focus only on the testing process, but this had not been the case for all CHs:

‘… it is just never-ending from the test point of view, putting those on, working to the deadlines, remembering to do things like order your test collections because you can’t do them too far in advance … You sort of think ‘Oh no, do you know how much work is involved in that?’ And then they brought in the lateral flow tests, so we’ve now got two of those for every member of staff to register, and just when you’ve got on top of doing those they then say “Right, we’re going to bring relatives back in now, they’re going to have to be lateral flowed as well”, so another load to put in’.

(Deputy Manager)

Some staff also discussed the COVID-19 vaccine and felt that vaccinating residents and staff had helped increase their safety. However, there were reports that some staff questioned why they needed to have the vaccine or why – when they and their residents were fully vaccinated – they still needed to continue with infection control measures:

‘… why now we’ve had two vaccines, why now are we having three tests a week, one PCR and two lateral flow tests, are we still having to wear masks? Why are we now having to wear visors? You know, it was all kind of, it wasn’t ever promised, but it was almost like, “We’ll have all this, do all this, and then we’ll kind of get back to normal”’.

(Manager)

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)

Visiting

Participants spoke of how visiting regulations evolved throughout the different pandemic waves and led to variations in interpreting and implementing visiting guidance. Visiting methods varied, including the use of window visits in the early wave of the pandemic, which were not without problems:

‘…. one very basic was window visits, because actually people were looking at window visits like it was a zoo, and what was the support for residents? So as we moved from the first wave of pandemic to the present, providers suddenly started to invest in pods, so more of a professional aspect of visiting. And I think there was a lot of distress caused by window visits, one for residents, especially those with mental health or learning difficulties, those that couldn’t understand that process of why, you know, their relatives, their loved ones were staring at them through windows, could that have been adapted better? Why did we wait so long to put isolation pods in?’

While technology (mainly digital technology) did help when visiting restrictions were in place, it also accentuated the digital divide between homes. As our CH staff participants also described in Chapter 5, focus group participants suggested that technology imposed an even greater workload on hard-pressed staff. There was also little time for training and staff development in digital technology. Virtual visits were implemented for clinical staff, who usually visited CHs, and this reinforced the sense of isolation and even abandonment in some cases. The implications of visiting restrictions on residents were viewed to be considerable and to act in different dimensions from practical arrangements and effect on the well-being of residents to human rights and legal issues:

‘So staff need support and training on the legal duties that they have and how they relate to visiting in terms of the Mental Capacity Act, the Equality Act, the Human Rights Act, and throw away references to those bits of law in government guidance is not going to help when staff aren’t trained in their duties in those bits of law and how to use them on the ground’.

Trauma

As the pandemic wore on and the different waves and variants emerged, there was a need to take greater account of the broader health and well-being needs of residents, their families, visitors and the CH workforce. Participants felt that it was slowly, increasingly being recognised that the workforce was traumatised. Hence, a trauma-informed approach was beginning to inform system leaders’ thinking about staff well-being. However, it remained unclear what that means in the CH sector. Equally, there was some concern shared that the awareness of trauma may have provoked an overreaction in balancing risk and rights of residents to the degree that some CHs adopted a more draconian set of measures and a closed culture:

‘Wave one had very limited mitigations, really public health 101, that Florence Nightingale would have recognised, wave two became more about the ability of testing and more sophisticated approaches to IPC and kit and equipment to enable that, and then wave three has become about the impact vaccinations have had on mitigating the impact of the wave. But also each was punctuated by emerging viral variants, so wave one was the wild type, wave two became the Alpha variant, which … swamped some of the defences that we’d already built, and then wave three has mainly been about the Delta variant, which again brought up more challenges. So again, while the scientific sort of issues behind that can be understood, what people in the frontline and these settings are experiencing is that just increasing degrees of concern that whatever defences we put in place this virus seems to be able to sidestep them and cause harm. Now thankfully the vaccine defence has proven to be the most resilient and touch wood continues to be so, but there is still the ever-present danger of variants emerging with vaccine escape potential. So it’s this balance of trying to be very clear about the risks we face, and communicate that effectively, without disempowering or traumatising people again who’ve been through an awful lot, and trying to give a high degree of confidence where we can in the measures we have in place and what they can do’.

Focus group participants spoke of trauma as impacting at several levels. Staff trauma derived from the experience of delivering care and the losses they had suffered due to people in their care dying. Residents were impacted by both the experiences of loss and grief, social isolation from their families and fear they might succumb to infection. Family members had not been able to have their pre-pandemic normal relationships with their loved ones in care settings and feared that their interaction might be a source of harm to the people they love. Families were also reported to be hesitant about re-engaging in a way that they would otherwise have done:

‘So we’ve had lots of stories about – despite policy enabling visiting – care homes being hesitant about enacting it, because of these sort of concerns about infection coming into the care home’.

Expert participants felt that the trauma caused by the pandemic on the CH sector needed to be acknowledged in the relationship between health and care within an integrated system:

‘You know, 30 years of care I don’t think I’ve kind of experienced anything quite so traumatic as kind of what we experienced ourselves in the small home here’.

‘I mean that’s just traumatic and I think actually from a commissioning and in integration perspective to just see the lack of esteem from our NHS hospitals to our care homes was really badly managed and I think in any environment where care homes are part of a solution to managing vulnerable people there needs to be parity of esteem, we need our NHS hospitals to understand that the care homes do an extraordinary job and if we want to support an integrated system’.

Legacy of learning

One of the major themes from the focus groups was a feeling that trust needed to be rebuilt at different levels of the system:

‘… there had been a huge amount of trust lost within care homes, so care providers don’t trust government, they don’t trust the system because they thought something would support them, if something really bad happened, and it didn’t’.

Trust had also been lost between CHs and the NHS:

‘… we have heard awful stories of care homes reaching out to the NHS and literally nothing happening, and no ambulances would come and all of those kind of things. And now we’re surprised that there’s a bit of lack of trust around vaccines, it’s just, you know, it’s following through the emotions as to where some of that might come from, so I think there’s a huge amount of emotional work that needs to be done to rebuild some of those relationships’.

Voice and expertise of the sector were also important:

‘I think the voice of social care needed to be higher on the agenda for national guidelines. Specifically, it was mentioned that the SAGE subgroup should have representation from staff, lived experience, managers, etc.’.

Key learning points from guidance included simplicity, the brevity of expression and readability targeted to the audience for which it was intended. It was also emphasised that those crafting guidance should have lived experience and expertise in the CH sector. Further lessons were also identified related to the benefits of bringing experts together across LAs to collate expertise, support each other and inform official positions:

‘… what went well is that the care home forums developed a lot stronger links, so they actually came together, so they were registered manager-led, they weren’t local authority or CCG-led, they were led by a registered manager, there were different providers … working together as one to support each other’s services through the pandemic, so that worked really well in some of the … [Local Authorities]’.

While there was the perception that some relationships broke down, others were seen as being strengthened (e.g. links between hospices and CHs). Engaging the sector in the development, financing and deployment of policy-making was another significant point. There seemed to be an openness to recognising the value of taking on board the needs of the end-users of any guidance or policy decisions and how to gain feedback on what was working or not. Not only that, but in terms of evidence implementation, it was acknowledged that in a rapidly changing virological landscape, some trade-offs and pragmatism might be required:

‘… it’s also important to recognise that even with the best efforts of some of the best scientific minds in the country on the SAGE groups, there are just evidence gaps in this space that aren’t filled yet, and therefore people have had to make judgements based on what evidence was available to them. And what that then requires is for people to cooperate together to try to evaluate whether the interventions have had the desired outcome or not’.

Furthermore, the implications of some of these decisions, such as the condition of receiving the vaccine to continue working, was felt not to match the reality of the CHs’ workforce conditions:

‘I’ve just done a survey with my members and a good 40–50% of them think they’re going to have to sack some staff because they won’t take the vaccine. Now that doesn’t seem right at a time when we’re going into winter pressures and when we’ve had 18 months of a really difficult working environment’.

The main driver for learning and future development remained on protecting older people and keeping them safe during and post the pandemic:

‘So we’re looking at a whole range of things that perhaps we might not have done but that we’ll continue to use going forward. At the end of the day I think the overriding factor was to keep people safe, to try and keep people informed, and for me how well that worked depended not just on the care home and who ran it and the knowledge of the staff, but also the cohort of residents in it’.

Innovations

Participants discussed how digital technologies are now being used more widely. There was greater understanding and engagement among CHs; people learnt how to use these technologies and exploit them to circumvent the impacts of social distancing. The view was that this had been a significant bonus and had opened a whole new way of sharing and exchanging information and supporting people in ways that might enable and facilitate their recovery. For instance, CHs now implement activities remotely, through digital technology, such as yoga, music, arts and culture interventions, which they previously only ever conceived as being delivered face to face etc. Together these were seen as opening a whole new universe of possibilities for CH residents:

‘… people have been really very creative during the pandemic, in ways that I don’t think would have happened otherwise, and it has certainly expedited and accelerated the implementation of all of that technological wizardry that was being used for other things, so repurposing existing stuff and bringing it into the care home sector has been a real, real benefit’.

The vaccine programme had been prioritised for CH residents. It targeted the most vulnerable group and managing that with distancing requirements was seen as an enormous step forward for the CH sector. Participants felt that closing down CHs was not new regarding visiting and access. The example of norovirus was used to illustrate workable policies and solutions to circumvent and provide safety for residents, visitors and staff. So, there are proven ways of working that can maintain some degree of safety and protection in the face of a highly destructive virus, which can hopefully be embedded for the future (with a keen eye on the potential negative impacts of getting it wrong). The sense was that a lot had been learnt about getting policy right when we need to lockdown a CH, albeit temporarily. The point was also made that there was a legacy of skills’ acquisition and a strengthening of clinical skills by staff in particular:

‘… it’s allowed them to actually probably go from a mediocre service to a higher service because all of a sudden they’ve been tested and they’ve possibly enjoyed that testing, I know, probably the wrong words to use, but actually they’ve had to up their game’.

Place

The effects observed were felt to vary according to place and locality, where existing solid networks and established relationships with the LA, community health services and healthcare professionals were felt to facilitate better outcomes for all involved. The support received from the LAs and CCGs were appreciated, but this was again deemed to vary from one area to another. Some CHs felt they were supported by the LA to form ‘subcommunities’ among CHs; this reduced the sense of isolation, improved the ease of interpreting guidance and impacted residents’ outcomes. However, these relations were diverse across different places and were subject to pre-pandemic established networks:

‘Some local authorities said you can form a subfamily unit within your care home, another local authority says you definitely can’t, so there wasn’t an opportunity for them to have a dining experience together or an afternoon together or to sit outside when the weather was well, socially distanced, so we had to be very creative over what we felt based on the infection control guidance was suitable’.

Such local networks extended to the relationships with different healthcare professional groups. Well-established working relationships pre-pandemic were felt to facilitate creative thinking and innovations in the delivery of care:

‘As a [Local Authority] we’re really, really fortunate and I’d recommend it to anybody, we have an OT team that works specifically with people with dementia in our care homes and extra care schemes. They have them allocated to each, they have two settings each, they design training, they knew the residents that had the difficulties and they were able to work with the staff to try and come up with some interventions to support the residents’.

On the other hand, where local networks were not strong before the pandemic, this was felt to affect residents’ outcomes adversely and significantly, especially for those with complex needs or specific communication difficulties:

‘The access to health services with other professionals backing away from care including social workers, CQC inspectors, GPs, district nurses, other health professionals, and care staff having to fill the gaps left by them, lack of access to hospital in the beginning whether you had COVID or something else, and that’s still ongoing, still lots of health care is being delivered virtually or from a distance, which as people have said virtual communication just simply doesn’t work with some people, particularly older people that we support, if you’ve got dementia or another condition communication difficulties and, you know, speaking to a GP on an iPad is going to be more distressing than anything else.’

Impact on staff

The pandemic and associated infection control measures, including social distancing and isolation, significantly impacted CH staff. Expert participants felt these affected staff retention, workload and well-being at work and beyond. CH managers were very conscious of these effects, and many tried to implement different supporting mechanisms for staff. However, such support varied across CHs and was very much dependent on the capacity of the CH managers. Here, care associations and national groups were able to provide some external support for staff:

‘We should not forget the staff who are working there who were frightened at the time, that they’re not necessarily the most educated, they’re certainly not well paid in terms of all the work that they do, and we can’t forget about the impact on them. For those care homes that didn’t have support for care home staff, we gained access to them to our employee assistance programmes and we also gained access via the [name] Foundation Trust and our CMHT access if they wanted it for psychological and support’.

The impact on staff was recognised within a pre-pandemic shortage and workforce challenges, making the situation much more difficult. CH staff found themselves in intense working conditions and increased workload associated with more pandemic-related tasks and more staff taking sick leave due to contracting COVID themselves. These stressful working conditions impacted the ability of staff to innovate or come up with much needed new ways of organising and delivering care during the pandemic:

‘I think what COVID did was laid bare the difficulties that were there already, so when we see certain settings perhaps not being innovative, perhaps not thinking about ways round things, if you think that pre-pandemic the sector was running with a roughly 10% fewer staff than it needs to function, we then have a pandemic, we then have staff off, we then have staff isolating and they’re just about managing to keep everything afloat and there wasn’t time for innovation for a lot of those care homes, they were just glad if there was enough people on the floor each day and that’s about as much as they could cope with’.

Overview of Workshop 1 discussions

These data sources and discussions informed the development of the draft content, which was organised around six areas, grouped into three sections:

1. Section 1 – Caring for Residents: caring for residents when they are social distancing; caring for residents when they are isolating.

2. Section 2 – Caring for Families and Friends: supporting residents, families and friends to communicate when visiting is not permitted; supporting visits from families and friends when visiting is allowed but with restrictions.

3. Section 3 – Caring for CH Staff: caring for care staff; caring for managers.

For each area, ‘consequences’ and ‘actions to consider’ were presented with illustrative data extracts and case studies.

This draft content was the focus of Workshop 2; a synthesis of Workshop 2 discussions is presented in Table 7.

Overview of Workshop 2 discussions

A third and final co-design activity involved sharing a further version of the draft content of the toolkit with stakeholders drawn from Workshops 1 and 2 [PPI group members × 10, CH managers × 2, Associate Director of Nursing × 1, Director of Clinical Services (Dementia UK) × 1, project team members × 8]. The final draft toolkit (presented in Appendix 5) comprises a section for Residents, Families and Friends, and CH staff with each section addressing two key areas. For each area, content is organised around three headers: ‘what is the issue?’, ‘what we have learnt’ and ‘you could try this’. Data extracts and case studies are incorporated and links to resources and organisations (see Boxes 1 and 2 for examples of the key areas related to caring for residents). The toolkit is intended to be used flexibly with staff, residents, families and friends to support health and care delivery by the following:

• contributing to person-centred care for residents, families and friends by providing evidence-informed guidance for social distancing and isolation of residents and related restrictions;

• support CHs to care for residents with diverse health and care needs (e.g. those living with dementia);

• support CHs to communicate well with residents, families and friends, and health and care professionals;

• help direct focus on staff well-being;

• help make the job easier for CHs during a pandemic;

• help inform care for other infectious diseases.

The toolkit will be free to download from the project webpage, and the film will be free to view from the project webpage.

Implementing social distancing and isolation measures for residents: challenges, consequences, solutions

Enabling connections and communications

An important finding of the study was the creativity and support offered by CH providers, managers and their staff to enable connections and communications between residents, families and friends while residents were isolating, when visiting was not permitted or was permitted with significant restrictions, and for CHs to keep connected and communicate with families and friends. Residents, and family members, highly valued that they were kept safe; they had experienced the difficulties and ill-effects of social distancing, isolation and restrictions but overall understood this and appreciated the safety of implemented measures.

The contributions of families and friends to creating a meaningful life for the older person living in a CH and to creating a sense of community are well known. 148–151 An analysis of support networks showed that older people living in CHs valued the support of family members more than any other tie. 152 Restrictions to visiting from families and friends had negative consequences for residents and their networks. At times of difficulty, it is normal to want to be with people we love, trust and feel safe with; residents shared that their mental health had deteriorated because of not seeing in person their families and friends and many felt abandoned – a finding that is reflected in other recent research, including a rapid review of the impact of visitor exclusion, which found that residents experienced higher levels of depression, anxiety, isolation and loneliness. 153,154 Family members also reported that visiting restrictions had exacerbated their loved one’s physical health decline, for example not being present to encourage, motivate and assist with activities, such as exercise regimens. Positively, the importance of family and friends was recognised in government guidance for England with the introduction of the essential family carer role in March 2021.

Similarly, anxieties and stresses were experienced by families: they were accepting of the need for restrictions to keep residents safe but were not always sure how or why decisions about guidance and implementation were made; many were fearful that they might not get to see their family member in person again; and they were anguished at no longer being involved in the resident’s daily life and the life of the CH community. There were additional feelings of powerlessness for families whose loved ones had moved into the CH during the pandemic, coupled with anger and heartbreak at not being there for this significant life transition. Therefore, enabling connections and communications was key to promoting a sense of security, continuity, belonging, purpose, achievement and significance for residents, families and friends. 141 Several innovative and creative approaches were identified to enable contact and communication between residents, families and friends. Stories were shared of how many residents had adjusted to using smartphones and tablets to keep in touch with family and friends through video calls. Others used video calls less often or not at all but made conventional audio calls. Residents with personal access to advanced video-calling technology provided by their relatives – and with the skills to operate it – appreciated the autonomy it afforded them; they did not rely on staff to facilitate calls and so could contact friends and family at times that suited them. This contrasted with those who did not own a mobile phone or could not operate one. Video calls worked less well for those unable to operate mobile technology or without their own devices.

For some family members, remote communication with their loved one was less personal, of variable quality and less private. Remote communication did not give them a complete picture of residents’ condition and well-being, though they did their best to seek out signs, for example the condition of the resident’s skin, and alertness. Others have reported that video-calling was the most helpful technology to mitigate the impact of isolation. 135 They reported that barriers to the use of technology in supporting residents during isolation were staff not having enough time to support residents with technology, residents with a sensory impairment, and poor internet connectivity. Despite these drawbacks, family members were keen to continue to have the option of communicating remotely with their loved ones.

Similar findings were reported when families were interviewed and expressed dissatisfaction with remote communications, which were described as infrequent, poorly organised, not private, functioning Wi-Fi or devices for video calls not available, and carers were often too busy to support calls. 155 There has been a call for governments and CH providers to prioritise the technological capabilities of CHs and ‘there is a moral urgency to address the digital exclusion of LTC homes’156 (p547). Senior health and care leaders in our focus groups shared that technology imposed an even greater workload on hard-pressed staff, and that there was little time for training and staff development in digital technology. Creative approaches to CHs communicating with families and friends to share information and updates about residents were valued by families. There is the potential to develop further these initiatives, for example applications that enable families to connect for updates about residents’ and their care. This would also be helpful for residents and families who are separated by non-pandemic-related circumstances, such as geographic distance, and family members who are unable to travel. Related to this is the opportunity to develop further in a joined-up way digital technology for CHs to be able to interact meaningfully with LAs, community, primary and hospital settings, and services. A welcome investment is the additional funding of at least £150 million over the next 3 years for technology and digitalisation in the recent White Paper for adult social care reform in England. 157

Caring for the care home workforce

Our study captured evidence of CH managers and staff time and again going above and beyond to care for residents, families and friends, and each other throughout the COVID-19 pandemic. There were several examples of the sacrifices that staff had made. While some staff had left employment due to fears of working in CHs during the pandemic, others had considered leaving but returned to work each day to support their colleagues and to care for residents. For many the ultimate reward was that their CH had remained safe. It was noteworthy that staff expressed great fondness and care for their residents and colleagues, often referring to those within the CH setting as a ‘family’.

Caring for the workforce is intrinsic to high-quality care. 159–161 A key study finding is that the CH workforce has experienced trauma and distress. When information was limited at the start of the pandemic, staff talked of how ‘frightening’ they found working with residents who were very poorly with this new, unknown virus. Many had also feared for their own safety at times, with concerns about catching the virus from residents and what would happen to them if they did in a similar way to many other nursing and healthcare staff. 162,163 Many staff also had fears for the safety of their families, and some had chosen to separate themselves from their children and vulnerable relatives, which came at significant personal cost. In addition to their stresses at work, staff shared their experience of stresses at home – some CH staff were experiencing family illness and bereavement, partners’ job losses, broken marriages, cancelled healthcare treatment and financial worries as a direct consequence of the pandemic.

Staff in our study spoke about far busier workloads and that initially their roles became more task-focused. Social distancing measures resulted in greater workload for staff as did supporting residents who were isolating. Good support from CH management was considered by staff to make the process of implementing these measures easier. Valuing support from employers is a theme in the published literature. 26,137,164 A finding of our review was that workload also increased for staff, due to the new tasks they had to undertake, which had previously been carried out by relatives or other professionals, such as hairdressers;69,95,103,123 as well as the extra preparations staff needed to undertake for the introduction of COVID-19 interventions. 25

Pre-pandemic there were staff shortages in the sector. 165 Implementing social distancing and isolation measures requires more staff, as does cohorting and visiting restrictions. With numbers further depleted due to sickness, self-isolation and fear during the pandemic, implementation of these measures was challenging. Use of agency staff helped boost the numbers, but even with block booking, this also introduced increased risk of transmission. While the government did introduce infection control grant funding to support the increased staffing costs, this did not help homes find, recruit and retain staff who want to work in CHs. Then and now, this is a significant problem, which the pandemic has highlighted and exacerbated. Our study values and recognises the workforce. It adds weight to the argument that the CH sector needs urgent development and support to grow to meet the needs of older people in the UK.

Staff feel mentally and physically exhausted by changes made to their working practices and the emotional distress they have experienced during the COVID-19 pandemic. These experiences resonate with other research. 144,166,167 Respondents in a study of 152 staff working in nursing homes spoke of mental and physical exhaustion and the ‘emotional burden of caring for residents experiencing distress, illness and death’144 (p199). Addressing a lack of pandemic preparedness, resilience training was expressed as a need by hospital employees participating in an intervention in response to the H1N1 pandemic. 168 The authors developed a training intervention providing information about normal stress responses, effective coping, and principles of organisational resilience, and allowing for discussion and reflection on anticipated stressors. Employees also identified the importance of visible leadership and the need for reliable, consistent and timely information. The need for longer-term psychological support for CH staff is paramount. A step in the right direction is the new well-being and occupational health offer in the 2022 White Paper for the reform of adult social care in England. 157 However, an infrastructure to support the central co-ordination, implementation and evaluation of this is paramount.

Care home staff must feel valued – we were told on more than one occasion that CH working can be a ‘thankless job’. The COVID-19 pandemic can be seized as an opportunity to challenge and eradicate the stigma of CH working being low status. Government investment in the sector is imperative. Key priorities include a review of working conditions and pay scales, and investment in recruitment, retention and development of care staff. On this note, it is encouraging that adult social care in England will benefit from at least £500 million from the Health and Social Care Levy to improve recruitment, retention, progression and staff well-being and that social care will be ‘recognised by the public as a valuable and high-quality service on par with the NHS.’157

Supporting care homes and the care home sector

A key study finding shared by CH staff and senior health and care leaders was the view that the CH sector was abandoned by the government in the early phase of the pandemic and was isolated from the NHS. It has been argued that the deaths of many CH residents were preventable and that one example of the ‘failure to protect life’ (p4) was the UK strategy of prioritising the protection of the NHS. 169 It was reported that between 17 March and 15 April 2020 around 25,000 people in England were discharged from hospitals to CHs. 170 This is perhaps reflective of systemic issues including the disparity between health and social care systems – as one author wrote: ‘The care system functions in the shadow of the NHS, which enjoys far greater resource allocation and higher cultural and political capital’16 (p2). There are historic imbalances of power between the NHS and social care. 171 Our findings underlie that there is a need to ensure that CHs and social care are considered an essential part of integrated care systems.

Care home staff told us that CHs had not been considered or given appropriate guidance early enough in the process. Similarly, our rapid review identified initial reports of a lack of guidance and clarity from governments about when and how interventions should be applied. There was a lack of research evidence about how to manage care in CHs during a pandemic; most of the papers in our review were grey literature, not empirical research. It has been reported that in the pandemic action plan, which was announced on 3 March 2020, there was just one mention of adult social care and a specific action plan for adult social care in England was not issued until 15 April 2020. 16

When guidance ensued, this was often long and complicated, with many different policies to consider, it changed frequently and was contradictory, causing confusion and loss of confidence. 112,144,172 This was reflected in some of the CH documents related to social distancing and isolation that we reviewed; these were difficult for staff to navigate because of multiple versions, lengthy, repetitive and with links to embedded documents. Time and attention were required to monitor the numerous iterations and to continually update to remain in compliance. 144 Further a ‘blanket approach’ to government guidance was criticised for failing to consider the many individual differences between CHs and CH residents. Care home managers had to use their ‘own common sense and … knowledge’ when interpreting the government guidance, rather than simply following it directly, selecting the parts of the guidance that were relevant to the individual CH setting. To this end, CH managers valued the support of their senior leadership to help them interpret and implement government guidance. This is in keeping with recent studies. 26,137,144,164

In addition to rapidly changing rules for CHs set by the government, communication of information to the sector from the government was described as chaotic. For example, it was shared that CHs found out about rule changes at the same time as the rest of the population, which meant that homes did not have enough time to implement them appropriately. These findings from CH staff, senior health and care leaders, and CH documents resonate with our review findings that there was a lack of guidance and clarity from governments around when and how interventions should be applied, with policy measures often scarce, flawed or adopted late. 43,46,52,56,77,82,84,103,116,128 Our findings are reflected in reported challenges for CHs of dealing with rapidly changing multiple sets of guidance,173,174 the CH sector being ill-prepared to cope with a pandemic173,175 and the sector not being supported well at the outset by governments. 18,136,173,176

Care homes need evidence-informed guidance that sets out what and how social distancing and isolation measures should be operationalised, while meeting residents’ individual needs, including their fundamental rights to liberty and security, and with attention to education for residents, families and friends, and staff. 175 Our toolkit helps address this need. Our study findings contribute to important lessons for decision-makers about the need for clear, concise and meaningful guidance about social distancing and isolation and related measures that can be translated easily into operational policies for CHs. Our findings also emphasise the importance of social care having a more equitable influence in integrated health care services.

For practice

Implications of the study findings for practice are captured in our toolkit for supporting CHs with social distancing and isolation measures for older people. These are framed around six priority areas: caring for residents when they are social distancing; caring for residents when they are isolating; supporting residents, families, and friends to communicate when visiting is not permitted; supporting visits from families and friends when visiting is allowed but with restrictions; caring for care staff; and caring for managers.

For policy

The study findings can inform discussions involving CH providers, managers and external stakeholders to enhance understanding of social distancing and isolation measures for residents – consequences, challenges, solutions and learning going forward. Our findings also have implications about how guidelines are developed and disseminated. Our findings reinforce the need for CHs and social care to be considered as an integral part of integrated care systems, to ensure that actions taken during national emergencies fully account for the impact on all parts of health and social care, including CHs. Our findings can inform discussions about developing digital technologies to help residents with different health and care needs stay connected with families and friends, and for CHs to communicate effectively with residents’ families and friends.

Our findings can contribute to the content of the digital hub for the social care workforce as set out in the 2022 White Paper for the reform of adult social care in England. 157

Participant representation

From the outset this study was designed to be inclusive in how we answered the research question. Thus we set out to elicit the voice of a broad range of residents, their families and friends, CH staff, and senior health and care leaders about social distancing, isolation and other restrictions related to caring for older people living in CHs during the COVID-19 pandemic.

Compounding the well-known challenges of conducting research in CHs, the research team was compelled to recruit CHs, participants and to conduct fieldwork remotely due to restrictions owing to the COVID-19 pandemic. These measures prohibited us from immersing ourselves as researcher–observers to gain insights into contexts and cultures and to observe first-hand activities, interactions and communications related to implementing social distancing and isolation measures. Conducting interviews remotely may have excluded some potential participants who may not have felt comfortable with being interviewed using remote technology. However, we adopted a variety of strategies to maximise recruitment and successful fieldwork, for example each CH had a nominated project champion whom we worked closely with to identify and recruit participants and to support participants during the interview process and relatives were given the option of doing their interview in their own home using their own device (e.g. smartphone, laptop, tablet, telephone).

We successfully recruited our target of six CHs in England. CHs were invited purposively, using a sampling frame designed to maximise variability in terms of size of the CH, geographical location, CQC rating, registration (nursing, residential or dual registration), ownership and incidence of COVID-19. The pandemic experience for the CH sector has impacted on CHs being research ready; the team worked hard over a prolonged period to recruit two case study sites with a ‘requires improvement’ CQC; this was not successful. We also managed a key issue around recruitment of participants from BAME groups. At meetings of the Study Steering Committee and Data Monitoring and Ethics Committee, we discussed these challenges and there was agreement that we should prioritise diversity of participants and not focus on recruiting CHs with a CQC rating of requires improvement. This revised plan was shared with NIHR and we were granted permission to proceed with this revised plan.

Staff were purposively recruited to ensure variation (e.g. in age, gender, ethnicity and time in service). Resident participants were also recruited purposively, to ensure a range of genders, ethnicities and different health and care needs. Inclusion criteria were that residents must be over 65 years old and have the capacity to consent. The 31 purposively sampled CH staff participants had a range of roles and were varied in terms of length of time working in their current role and in the CH sector, gender and ethnicity. A limitation for the resident and family participant groups is their limited ethnic diversity (all residents and all but one of the family members were white people); this is despite a concerted effort to recruit as per our purposive sampling.

Reflections on the research team and wider involvement

The project team included senior healthcare professionals who work in the CH sector and established academic researchers with a background in health and/or social care research. JF is a RN with a specialist clinical and academic track record in gerontology with expertise in mixed-methods research to study the organisation and delivery of older people health care in acute and CH settings. SH is a medical demographer and an expert in social care practice and delivery including CHs and the care workforce. AMR is an expert on health workforce policy and experienced in quantitative and qualitative studies of workforce dynamics, including ethnographies of teamwork and deployment policies. RH is a nurse with expertise in evaluating complex interventions, including the organisation of nursing work, interprofessional teamwork and leadership of integrated care systems. AD is a social anthropologist with expertise in the ethnographic study of health and care organisations. SS has expertise in conducting complex multimethod studies in the NHS, project management, and user involvement. SB is lead for service user and public involvement, and for dissemination to service users and public. RA is an experienced executive nurse with strategic development and operational management experience in the independent sector. LR is a specialist nurse with expertise in leadership, clinical governance, quality assurance and quality improvement in CHs.

Our Steering Committee and Data Monitoring and Ethics Committee included experts representing the CH sector, CH nursing and IPC. We established a dedicated study PPI group comprised of 10 members, 2 of whom were also members of the Study Steering Committee. This group comprised mostly of older people, many of whom have extensive personal experience of health and care services, and several are or have been (informal) carers. PPI was an integral part of this study, informing its design, method, analysis and dissemination. PPI contributions included reviewing all participant-facing paperwork for submission to the Research Ethics Committee (e.g. plain language summary, project flyer, participant information sheets, consent forms and interview guides). PPI group members also participated in online workshops to contribute to the co-design of the toolkit.

Strategies for COVID-19

Eighty-three papers specifically discussed the strategies used by CHs to implement social distancing or isolation of residents to prevent or control the transmission of COVID-19 among their residents and staff and/or the impact, challenges or facilitators of these strategies. 9,22,24,25,32–43,46–53,55–64,66–70,73–75,77–80,82–85,87,89–92,94,95,97,99,103–110,112,113,115–117,119,120,122–130 Other papers explored issues around restrictions, zoning, cohorting and surveillance. Many other strategies, such as the use of PPE, testing, ventilation and adequate hygiene procedures, were also regularly highlighted alongside these discussions but are beyond the scope of this review and therefore not discussed here.

This report is structured so that the individual methods associated with prevention and control are discussed separately.

Strategies used by care homes to prevent the transmission of COVID-19

Strategies used by care homes to control the transmission of COVID-19

Strategies for other (non-COVID-19) infectious diseases

Authors

Joanne M. Fitzpatrick, Anne Marie Rafferty, Shereen Hussein, Sarah Sims, Amit Desai, Sally Brearley, Richard Adams, Lindsay Rees, Ruth Harris

For further information, email joanne.fitzpatrick@kcl.ac.uk

Priority Area (A) caring for residents when they are social distancing

Priority Area (B) caring for residents when they are isolating

Priority Area (C) supporting residents and their families and friends to communicate when visiting is not permitted

Priority Area (D) supporting visits from families and friends when visiting is allowed but with restrictions

Priority Area (E) supporting care home staff

Priority Area (F) supporting care home managers