The COVID-19 pandemic was an unprecedented public health emergency and care home residents were especially vulnerable to infection. In England, as in other countries, visiting restrictions were introduced to manage this vulnerability.
Visit-id, a study conducted by the Care Policy and Evaluation Centre (CPEC) at the London School of Economics and Political Science (LSE) with Care England, investigated the impacts of visiting restrictions on the well-being and autonomy of care home residents and how to best support them and their family carers, and findings have recently been published in the peer-reviewed journal, Ageing and Society. The study was funded by the National Institute of Health and Care Research (NIHR) Policy Research Programme (Ref: NIHR202482). As part of this study, researchers undertook in-depth interviews with 27 family carers with relatives in care homes in England during the pandemic. While the height of the pandemic may be over, drawing practical lessons from how visiting restrictions were implemented and affected residents is critical for informing the response to future such public health emergencies.
Navigating uncertainty and ambiguity
In the early and uncertain phases of the COVID-19 pandemic, policymakers had little existing evidence to guide them. Family carers described how, initially, they placed trust in the national guidance, believing that, at that time, visiting restrictions were in residents' best interest. However, respondents said that they later felt confused by inconsistencies, including perceived differences between government announcements and care home practices, conflicting advice from local organisations and even being told different things by staff in the same care home. Also, while some care homes were clear with families about what the national rules said and how they were interpreting these in practice, many respondents were unsure about how much freedom care homes had, which added to confusion.
Respondents also became less confident that the restrictions were keeping their relative safe from COVID-19 and could not understand why restrictions remained so stringent while regulations were relaxed in the broader community. One respondent stated, "It was ridiculous, people were going to cinemas while we couldn’t visit my mum." These experiences of uncertainty and inconsistency were often distressing and made it more difficult for families and care homes to work well together to ensure the well-being of residents.
Impacts of the restrictions
The restrictions, designed to stop COVID-19 from spreading, had unintended effects. For care home residents, many with dementia, their well-being and autonomy often depends on support from close relations as well as staff. Being apart during the pandemic, for example, meant that family carers could not check on their relative's health as usual or help with meal times or staying mobile. In some cases, respondents believed that this had led to weight loss, loss of mobility, and greater chance of falling. It was also harder for family carers to work with staff to help identify their relative with dementia’s emotional and physical needs and devise appropriate care strategies.
Respondents also reported that the visiting rules took a toll on residents' emotional well-being. Being separated from family could cause distress, especially when people felt there was limited time left or were apart from their spouses. During visits, some residents with dementia were also confused and distressed by social distancing or masks and other protective wear. Family carers found it particularly hard not to be able to provide comfort and support when their relative was distressed. However, in homes with ample staffing, personalised ways of providing care, and where socialising continued as normally as possible between staff and residents in the home, being separated from family was not as troubling because residents could rely on care home staff and each other for support and company.
Improving support for care home residents and carers
There are lessons to be learnt from COVID-19, which can inform current practice as well as how we manage future public health emergencies. To support the well-being and autonomy of care home residents, as well as the effective involvement of family carers, four key measures were identified in this study:
- Ensuring clarity, a sense of shared purpose, clear accountability, and confidence in restrictions: Care homes should be effectively supported to implement infection control measures in ways that involve working closely with family carers, with a focus on proportionality, consistency and clear communication.
- Family carers having access to regular, personalised updates about their relative using a range of digital communication tools: Video conferencing calls with staff members providing direct care and online portals for family carers were examples in the study of effective ways of giving family carers first-hand information about their relatives’ well-being and improving communication. Up-to-date and accurate digital care records also play a role in this process.
- Allowing choice about visiting arrangements where possible, and ensuring visits are appropriate for residents with dementia: While staffing pressures and lack of flexibility in the guidance may have led to undifferentiated application of restrictions, a priority moving forward will be to ensure that visiting can be adapted more for individual needs, and especially the specific needs of people with dementia.
- Ensuring that family carers feel welcomed, involved and enabled to resume in-person visits at the earliest opportunity: It is important for family carers to feel welcomed and actively involved in their relative’s care, a point highlighted in earlier research, emphasised by the UK Parliament Joint Committee on Human Rights (2021) and addressed in the recently tabled Care Supporters Bill.
The COVID-19 pandemic was an unprecedented challenge for policymakers, care homes, family carers and residents alike. Given the vulnerability of care home residents, national guidance in England prioritised limiting transmission. Moving forward, the impacts of restrictions on the wider physical and emotional well-being of care home residents and on the involvement of family carers need to be fully considered in decision-making.
Josie Dixon, Assistant Professorial Research Fellow at CPEC and the paper’s lead author, said,
The autonomy and well-being of care home residents depends significantly on relational support, not just from care staff but also families and others. Supporting the whole network of relationships around the resident is critical for averting possible harms from infection control measures and restrictions. Our paper draws on the first-hand accounts of family carers to make practical suggestions about how support can be enhanced in future; through excellent communication about restrictions, optimising how digital technologies are employed, identifying and adapting to specific needs and family-centred approaches to care.
Professor Martin Green OBE, Chief Executive of Care England, reflected,
The COVID-19 pandemic shone a spotlight on the importance of visiting for the wellbeing of people in care; people cannot flourish without these interactions. Care providers fostered and promoted, whenever and however possible, these important relationships that brought meaning and continuity of personality and values to people. A key part of this puzzle was the utilisation of digital tools which enabled the continuation of meaningful connections. The findings of this paper highlight the need for the effective implementation of digital solutions in care services, and support for providers to be able to introduce and maintain them.
The well-being and autonomy of care home residents is unavoidably relational, meaning that family carers, as well as staff, play a key role in ensuring residents’ needs are met. As we look towards the future, including preparing for the any future such public health emergencies, it will be critical to recognise the knock-on effects of infection control measures and mitigate these in a nuanced and consultative way, while also ensuring that family carers remain fully involved in decision-making.
Disclaimer: The views expressed in the study are those of the author(s) and not necessarily those of NIHR or the Department of Health and Social Care.
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