key: cord-0996429-64shbhnk
authors: Giebel, Clarissa; Hanna, Kerry; Cannon, Jacqueline; Shenton, Justine; Mason, Stephen; Tetlow, Hilary; Marlow, Paul; Rajagopal, Manoj; Gabbay, Mark
title: Taking the ‘care’ out of care homes: The moral dilemma of institutional long‐term care provision during COVID‐19
date: 2021-11-21
journal: Health Soc Care Community
DOI: 10.1111/hsc.13651
sha: a687c9e2df9e4fe02fdd71c8752924ee1584adc5
doc_id: 996429
cord_uid: 64shbhnk

Little is known on how the pandemic has changed care home care delivery. The aim of this study was to explore the impact of COVID‐19 on care provision and visits in care homes from staff and family members’ perspectives. For this purpose, we conducted a telephone‐ and zoom‐based qualitative semi‐structured interview study. Care home staff and family carers of people living with dementia (PLWD) across the UK were recruited via convenience sampling and participated via telephone or online. Participants took part in a semi‐structured remote interview. Data were collected between October and November 2020. Anonymised transcripts were analysed separately by two research team members using thematic analysis, with codes discussed and themes generated jointly, supported by research team input. 42 participants (26 family carers and 16 care home staff) took part. Five themes were generated: (a) Care home reputation and financial implications; (b) Lack of care; (c) Communication or lack thereof; (d) Visiting rights/changes based on residents’ needs; (e) Deterioration of residents. With a lack of clear guidance throughout the pandemic, care homes delivered care differently with disparities in the levels and types of visiting allowed for family members. Lack of communication between care homes and family members, but also government and care homes, led to family carers feeling excluded and concerned about the well‐being of their relative. Improved communication and clear guidance for care homes and the public are required to negate the potentially damaging effects of COVID‐19 restrictions upon residents, their families and the carers who support them.

Since early 2020, COVID-19 has caused severe disturbances in care for older adults and people with dementia (Cheung & Peri, 2020) .

Given the high susceptibility of older adults to the virus, care homes have been the worst affected setting in this pandemic (Liu et al., 2020) . In England and Wales alone, around 20,000 COVID-19 related deaths have been recorded amongst the care home population, although there is no consistent count since the pandemic began (Office for National Statistics [ONS] , 2020).

Care homes in the UK encompass both nursing homes and residential care settings without qualified nursing support. Since March 2020, rules and guidance surrounding care home visiting and testing have changed, following delays in guidance provision in the first instance. In the first 3 months of the pandemic, the majority of care homes were completely locked down and stopped access for family members. Over the summer, visiting changed and was dependent on the individual care home, without any clear understanding nationally of what was provided and how these different types of visiting were experienced. Besides care home specific changes, the UK has seen various public health restrictions implemented since March, with currently a third nationwide lockdown being imposed (see Figure 1 for further details).

Considering the large number of people in close proximity, and the frailty and age of the care home population, once COVID-19 reached a care home it could easily spread within (Burton et al., 2020) . Risk of infection was heightened further where staff worked across different care homes (Ladhani et al., 2020) . In Canada, the risk of a COVID-19 outbreak was heightened in care homes with older/non-purposive design standards, and the extent of an outbreak was greater in for-profit care homes, which thus also had higher levels of associated deaths (Stall et al., 2020) . The risk of an outbreak further increased in larger care homes, as identified in one region of the UK (Burton et al., 2020) . These patterns indicate severe concerns for infection management in care homes, especially with a lack of accessible testing in the early stages of the pandemic, and are likely to have a notable impact on current and future care home practices and visiting rights for family members.

Evidence on how care provision in care homes has been affected is very limited to date. Emerging research has shown the positive impacts of clear care home visiting guidance early on in the Netherlands, and how visits were not linked to any subsequent outbreaks (Verbeek et al., 2020) . The deleterious psychosocial impact on family members has been quantified in the US, where family members of care home residents with cognitive impairment, including dementia, have reported reduced levels of well-being as a result of the visiting restrictions, as well as poorer communication with staff (O'Caoimh et al., 2020) . As Canevelli et al. (2020) highlight, it is important to provide both infection control and dementia-sensitive care simultaneously during this ongoing pandemic. Whilst these first findings indicate an impact on the emotional well-being of family members, it is still unclear though how the restrictions have impacted, and are impacting, on residents and staff, and how precisely care provision has changed during the pandemic in institutional long-term care settings as opposed to community care (Giebel et al., 2020) .

The aim of this study was to explore the experiences of family carers and care home staff of pandemic-related changes to care delivery and provision, by understanding the impact that risk management and infection control versus care for residents have on care delivery. Care encompasses tending to physical basic care needs, support with more instrumental activities of daily living, such as engaging in social activities, as well as ensuring the mental well-being of residents. Although heavily covered in the media, to date there is still little scientific evidence on how care provision in care homes has been affected, and its implications for all involved. Whilst frontline health and social care staff in the UK and more globally are starting to be vaccinated now, as well as the oldest of our population and care home residents, it is important to understand the changes in care resulting from COVID-19, and provide crucial learning for both the current and future pandemics.

This was a qualitative semi-structured interview study.

Unpaid family carers were eligible if the person they used to care for in the community had a diagnosis of dementia, and was at the study time point, residing in a care home. Care home staff were eligible if they worked in a care home or worked solely with care homes as part of their clinical roles. All participants had to be at least 18 years of age.

Unpaid family carers and care home staff were recruited via third sector organisations such as the Liverpool Service User Reference Forum and the Lewy Body Society, many of which have existing links with care home organisations; an existing network of dementia and ageing (the Liverpool Dementia & Ageing Research Forum); and social media. This involved emailing organisations and sharing the study information, as well as posting information about the study on social media. Interested participants could contact the principal investigator via email to take part.

Participants were asked demographic background questions and about details of the care home in which their relative resided in / What is known about this topic?

• People with dementia and family carers have been severely affected by the pandemic.

• Care home closures are bad for the well-being of residents and family members.

• Social care staff is emotionally affected by the pandemic and providing care in stressful situations.

• This is the first paper to explore how care delivery and visitation are affected from both family carers' and staff' points of views. Interview topic guides were co-developed with current and former carers as well as clinicians and service providers, and can be found in Appendix S1. Family carers were asked about their experiences of visiting and communicating with their relative with dementia during the pandemic, and how this had changed compared to before March 2020 and severe public health measures. Care home staff was asked about how care provision and their regular working day had changed since the pandemic, how their care home was providing testing and general COVID-19 safety measures, visiting and communications between family members and residents, the impact of the restrictions on the residents, End of Life Care arrangements, and their perceptions of working in the care sector.

Semi-structured interviews were conducted over the phone or online via zoom and audio-recorded between October and November 2020. Verbal consent was obtained and recorded at the beginning of each interview. Interviews lasted between 12 and 58 min, and lasted on average 30 (±11) minutes.

At the time of data collection, public health restrictions had been devolved into the four nations across the UK, with different restrictions in place in England, Wales, Scotland, and Northern Ireland.

In October/November 2020, the UK faced the beginning of Wave 2, and England had implemented a second lockdown from early November to early December.

Ethical approval was received from the University of Liverpool (Ref:

7626) prior to study begin.

Anonymised transcripts were coded by research team members (CG, KH, MG, JC, SM) and one assistant psychologist, ensuring that each transcript was coded by two people. Specifically, one researcher (KH) coded all transcripts, and the second round of coding for each transcript was split across the four other team members and the assistant psychologist. This was to ensure that each transcript was coded twice, and ensured a diverse background in those who were coding the data, ensuring that all information was picked up. Data coders were experienced in conducting qualitative analysis, including academics, clinicians, and one former carer. Data were analysed using descriptive, inductive thematic analysis (Braun & Clarke, 2006) , whereby emerging codes and themes about care provision and visiting were conceptualised when reading through the transcripts. Each coder went through their transcripts separately, before discussing the codes jointly.

This solidified the codes amongst the team members and allowed clustering of individual codes into themes. These were discussed with all carers who were active team members to ensure identified themes reflected their real-life experiences of caring for someone living with dementia.

One current and two former unpaid carers were active team members in this study. Both former carers were also currently running a third sector organisation to support carers and people living with dementia (PLWD). All three were involved in all aspects of the study, including designing study documents, attending team meetings, interpreting findings, and contributing to the dissemination. Public involvement fees were paid according to NIHR INVOLVE (2013) guidelines.

F I G U R E 1 Timeline of COVID-19 public health restrictions in the UK

A total of 42 participants were interviewed for this study (26 family carers and 16 care home staff). The majority were female (n = 31), White British (n = 35) and with a mean age of 55 (±16) years. Many participants (44%) resided in the least disadvantaged quintile (index of multiple deprivation [IMD] = 1) as reported from their postcode IMD score. Of the 26 family carers recruited, the majority were adult children (n = 16), with the remaining relations spouse or partner. The most common dementia subtype, of the PLWD residing in a care home, was Alzheimer's (n = 8), followed by Lewy Body (n = 6) and vascular dementia (n = 4). Of the 16 care home staff, the mean years of working in a care home were 9.3 (±10.6), with care assistant and manager the most common job roles (n = 4 respectively). Staff was recruited from 16 different care homes. Table 1 shows the full demographics of the recruited participants.

Thematic analysis identified five themes: (1) care home reputation and financial implications; (2) lack of care; (3) communication or lack thereof; (4) visiting rights changes based on residents' needs; (5) deterioration of residents. Table 2 shows all quotes by theme.

Both family carers and some care home staff raised concern about the reputation of many care homes by reporting COVID-19 cases, and their implications on their financial future and survival. Care In contrast, family carers were concerned about the well-being of the relatives residing in the care homes, with some feeling that care homes prioritised their reputation and income over the residents' well-being.

Some family carers suggested reductions of care for their relative during the pandemic. Carers were mindful of the additional workload and job intensity for care home staff and considered that to be one of the reasons why care home staff were less able to focus on the individual's care. It is to be noted that not all family carers reported reduced quality of care, yet questioned the regulations and delivery of guidance by care home staff in not enabling face-to-face visiting due to the detrimental impact on the residents. Being unable to see family and have regular social contact was seen to be a lack of care in its own right.

Visiting regulations seemed to be different in end of life scenarios, but to have to reach these before restrictions were relaxed was not desirable for anyone and family carers wanted to see their relatives before end of life care was initiated.

3.4.1 | Communication from the government Both care home staff and family carers experienced minimal communication from the government surrounding guidance. Even when new guidance was announced in the media, there was a delay in detailed guidance being circulated to care homes, so that care home staff faced additional difficulties in that period when family carers expected changes to take place immediately.

There were mixed experiences surrounding communication between care homes and family carers, with many reporting positive experiences by receiving regular newsletters, at least at the beginning of the pandemic. Whilst many family carers would have wanted more regular communication and updates about their relatives, many trusted care home staff in informing them if anything important was happening. Others also noted that they were repeatedly told similar information about their relative, making carers suspicious of the information provided by care home staff.

With constantly changing regulations, many family carers experienced sudden changes in visiting rights without having had sufficient information about these in advance, which caused distress to carers. Family carers also missed being able to talk to care home staff about their relatives, as could normally be done pre-pandemic. This would have provided them with more information about their relative, especially when remote technology was not working for residents and caused difficulties.

Care homes tried to enable communication between residents and family carers via remote technology, including Skype and FaceTime.

This seemed to be more for the benefit of family carers though, as residents often appeared to be unable to comprehend remote technology and seeing their relatives through a screen, amplified by the cognitive difficulties those people with dementia experience. Most Abbreviation: BAME, black and minority ethnic; IMD, index of multiple deprivation; PLWD, people living with dementia. a n = 4 missing data (IMD not generated from provided postcodes).

older adults were unfamiliar with remote technology in the first place and were only introduced to it through the pandemic, and with severe cognitive deficits for many, they were unable to process this form of communication.

One care home staff member acclaimed remote communication without noting any comprehension difficulties from care home residents. However, this was unlike other participants' experiences and highlights either a rare exception or unwillingness to share negative experiences about care delivery. With some families being allowed to see their relative in the care homes, others were left out and were complaining about the different allowances made, whilst they were told specifically that they

were not allowed to visit their relative.

Care home staff and family carers noted deteriorations in residents, both in physical and mental well-being. With most family carers rarely seeing their relative either face-to-face or remotely, they often noted severe deteriorations when they eventually saw their relative.

Care home staff further reported that some residents were upset about not being able to see their family, which is why they were often allowed to see their family members as outlined in Theme 4.

This was noted in behavioural disturbances in residents and a loss of appetite, leading to physical deteriorations. Carers noted that these changes may be due to dementia and may have occurred regardless of COVID-19 public restrictions, however they were considered more difficult to manage due to the restrictions. , daughter "…we always had a relative's meetings every month, we still have those on zoom, we have one family member who would contact me every day trying to come in which was really sad … they're all quite happy at the moment because they're coming in, but they do want to come in more often but I've just said no because you know it's the footfall I've got 59 residents … every person has somebody in that's 59 people … so it's really just trying to get them to understand that." CS2, female care home manager Remote technology not effective for residents "we tried FaceTime but again she's just not getting it so you know it's sort of again lovely to see her and like a carer would be like here's your Jo here's your Jo but she's looking at a screen but she's not seeing she's not seeing anything she's not seeing isn't seeing a person." FC10, daughter "on FaceTime some people don't even recognise their families because they don't recognise the technology, they'll think they're looking at a photograph" CS8, female activity coordinator "after a few months or something they were looking into getting like a WhatsApp they were trying to get a tablet and that so we could do WhatsApp or Zoom calls or whatever she could see. The only thing is with my mum, we did try a couple of those but she just, she didn't register that the phone was there." FC3, daughter "Socially, as I've just said, they've taken really well to technology and ways of communicating with loved ones which is going fantastic." CS5, female care home manager (Continues) (Borges-Machado et al., 2020; Giebel et al., 2020) , which is reflected in care home residents with dementia, as our study indicates. Therefore, it is vital that family members are allowed to see their relatives faceto-face on a regular basis, whilst adhering to public health measures to prevent virus transmission. An alternative, which has been tested recently in parts of the UK, was completing multiple lateral flow tests that take a short time to confirm whether someone has contracted COVID-19. However, these tests were found to miss nearly half of affected COVID-19 cases (Wise, 2020) , therefore adhering to full PPE and social distancing measures may be more feasible until the vaccination of all care home residents and staff.

Some staff adapted visiting rules for residents where they noticed a negative impact on the resident's mental health, allowing family members to visit, or visit more frequently. This is in contrast to the strict adherence to rules by many staff, who put the physical health from suffering COVID-19 above the wider mental health of residents, without making care decisions on an individual basis. Besides the desire to reduce the chances of infection in the care home, it appears that staff may also be wary of the national care home ratings if they were to have COVID-19 cases and subsequent future income from new residents. Besides this financial and reputational angle, the low levels of general training which UK care workers mostly receive and limited evidence-based personal care practice may also be to blame (Fossey et al., 2014) . This pandemic has caused enormous pressures and sudden changes to the care home sector, and many staff may have been ill-equipped in handling these and making well-considered care decisions without having had sufficient training in the first place and with a lack of clear guidance, leading to burnout (Padros et al., 2021) . Support for this argument comes from the Netherlands, a country often lauded for its advanced care and social care sector. The Netherlands was the first country to implement clear care home visiting guidance (Verbeek et al., 2020) , but its care

Theme 4: Visiting rights changes based on residents' needs "they've now set up a system where my mum will be put in front of the French doors at the back of the day room and they've got a pod on the outside so my mum will be in the wall but I will be sat in the pod with a plastic screen, which isn't ideal but you know at least I'll get to see her." FC26, son "you take somebody's temperature, you ensure that they're in full PPE, they're escorted to the bedroom where they'd make no contact with anybody else whatsoever and the room to which they're in with that individual is safe to either be kept at a distance or obviously wearing the PPE they're able to comfort their loved one but obviously we ensure that safeguarding in place, they do not come outside of that room. 

Whilst benefitting from a large qualitative sample with varied and rich data, from multiple different perspectives, this study is subject to some limitations. The recruitment strategy of convenience sampling via support service organisations and social media amongst others may have led to a self-selecting bias with many family carers with negative experiences wanting to share their stories. However, some carers also reported some less negative stories. The highly topical nature of the study led to us having to decline over 30 family carers from taking part due to overrecruitment within a short space of time. Recruitment for care home staff on the other hand was more difficult, which is likely to be due to the large workloads of staff during the pandemic and thus restraints for time. Nevertheless, we were able to interview 16 care home staff members with different experiences. Amongst the sample and its representativeness, one further limitation was limited ethnic diversity. Whilst precise statistics on the ethnic make-up of the care home population are missing (ONS, 2014), research into dementia care in ethnic minority groups indicates that many are cared for by their families, also for fear of stigma, and thus less likely to enter a care home (Baghirathan et al., 2018; Giebel et al., 2015) . Information on the adult social care workforce is limited also, with recent data highlighting only that 7% were EU nationals, and 9% non-EU nationals, yet no detail on their ethnic background (Skills for Care, 2020). Therefore, it is perhaps not surprising to see little ethnic diversity in our study, although future research should specifically address this limitation.

The pandemic has resulted in significant changes in care delivery across care homes, with staff trying to balance effective infection control and ensuring the mental, emotional, and physical well-being of residents. With vaccines slowly being rolled out in some countries, the pandemic will still stay around for some time, during which it is important for clear guidance to be communicated to care home staff and family members, ensuring the right level of care and levels of social contact are adhered to and enabled. Understanding institutional and individual responses to these situations and subsequent choices and decisions will inform future balance-setting between different risks and solutions.

We wish to thank all family carers and care home staff who took part in this study, and we also wish to thank the many family carers who expressed an interest to take part after we were already booked up.

We also wish to thank Maxine Martine and Lynne McClymont for transcribing the audio files very swiftly to analyse the data in time.

None declared.

CG, PM, MG, HT, JS, JC, KH, SM, MR conceptualised the study. CG managed the study, collected and analysed data, and drafted the manuscript. KH collected and analysed data. JC, SM, and MG analysed data. All co-authors interpreted the findings jointly, read drafts of the manuscript and approved the final manuscript.

The data that support the findings of this study are available from the corresponding author upon reasonable request.

https://orcid.org/0000-0002-0746-0566

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