Introduction

Some text in this chapter has been reproduced from a study protocol paper published by the authors in 2021.³ This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See https://creativecommons.org/licenses/by/4.0/. The text below includes minor additions and formatting changes to the original text.

This mixed-methods study was designed to explore and understand the real-life experiences of social distancing and isolation in care homes (CHs) for older people in England from the perspective of multiple stakeholders and to develop a toolkit of evidence-informed guidance and resources for health and care delivery. This chapter describes the context to this study and the structure of the report.

Context

Around 15,375 CHs in England provide care for older adults – 11,025 residential CHs and 4350 with nursing.⁴ In the UK, CHs are part of the adult social care sector, typically known as social care. Both residential and nursing CHs provide personal care for residents. In addition, nursing CHs employ registered nurses (RNs) to provide nursing care. The CH sector is diverse and complex in its configuration, for example ownership (with CHs run by private companies, voluntary or charity organisations and some by local councils), provision size and residents’ funding arrangements. The CH sector in England employs approximately 670,000 people, caring for just under 400,000 older people.⁵ Many older people living in CHs have complex health and social care needs,^6,7 with dementia and Alzheimer’s disease being the most common conditions for those in England and Wales.⁸ These older people are at high risk of poor health outcomes and mortality if they contract coronavirus disease 2019 (COVID-19).⁹

COVID-19 was declared a global pandemic by the World Health Organization (WHO) on 11 March 2020¹⁰ and in the UK the first national lockdown was announced by the Prime Minister on 23 March 2020, with people being ordered to ‘stay at home’ and ‘save lives’.¹¹ Shortly after that restrictions to CH visiting were issued,¹² and on 15 April 2020 an action plan for social care in England was introduced by government that adopted a four-pillar approach to control the spread of infection; support the workforce; support independence, support people at the end of their lives and respond to individual needs; and support local authorities (LAs) and providers of care.¹³ Plans for the other three countries of the UK occurred around the same time; the decision-making and policy response of the devolved administrations of Wales, Scotland and Northern Ireland is, however, beyond the scope of this study.

For 22 countries worldwide, 41% of all COVID-19 deaths were CH residents.¹⁴ The Office for National Statistics for England and Wales reported that since the beginning of the COVID-19 pandemic, of an estimated 274,063 CH resident deaths, 16.7% (45,632) were attributable to COVID-19.⁸ At the peak of the first wave (defined by the authors as starting on 1 February 2020 and lasting until 31 August 2020), an observational study of 4.3 million adults over 65 years living in CHs in England reported that the risk of mortality among women increased by 115% and among men by 147%.¹⁵ This contrasted with 30% for women and 47% for men living in private homes.¹⁵ COVID-19 was the second leading cause of death for women in CHs in England in the first and second waves and the leading cause of death for men living in CHs in England during wave one.⁸

Early evidence indicated that the CH sector was overlooked in the initial planning of how to contain COVID-19,¹⁶ with reports of CHs caring for older people facing significant challenges.^17,18 Challenges included inadequate support to manage infection prevention and control (IPC) effectively; decision-making at speed in a vacuum of evidence-informed guidance to care safely for residents, families, friends and staff; sourcing and funding of personal protective equipment (PPE); concerns about testing; and guidance related to the discharge of older people from hospitals to CHs.^19,20

Care homes implemented various measures to help protect residents from contracting COVID-19, including social distancing and isolation as per government guidance, which is the focus of our study. We use the terms social distancing and isolation as set out in the UK government document, ‘Admission and care of residents in a CH during COVID-19’.²¹ The guidance stated that CHs ‘should be stringent in following social distancing measures for everyone in the care home and supporting those in clinically extremely vulnerable groups to follow shielding guidance’ (p23). Further, residents should be isolated in their own bedroom for 14 days following discharge from hospital or interim care facilities or when moving into a CH from a private home. Likewise, symptomatic residents, and residents without symptoms but who had been exposed to a person with possible or confirmed COVID-19, should be isolated for 14 days in their own bedroom from the onset of symptoms or a positive test result or after the last exposure. The evidence base to support the delivery of social distancing and isolation in CHs was lacking.⁹ Care homes reported that implementing these measures when caring for residents was challenging,²² with regard to social distancing and isolation for residents living with dementia who may ‘walk with purpose, often called wandering’.⁹

The NIHR commissioned research to better understand and manage the health and social care consequences of the global COVID-19 pandemic beyond the acute phase. Our study provides a unique contribution to helping protect older people living in CHs from COVID-19 now and for any future outbreak. It identified the real-life challenges and consequences of providing safe care incorporating social distancing and isolation measures within a CH setting while balancing potentially negative consequences for residents’ psychological, emotional, cognitive and physical well-being, and importantly it is informed by the perspective of residents, families and friends, CH staff, and external health and social care stakeholders. The study culminates in a co-designed toolkit comprising evidence-informed guidance and resources to support CHs, their staff, residents and families/friends during this and for any future outbreak.

Why this research is important

Research is needed to explore and understand the challenges experienced by CHs endeavouring to implement these measures in a person-centred way so that CHs do not become institutions of confinement. It is critical to capture the expert ways in which CHs are implementing social distancing and isolation requirements in this challenging environment and mitigating adverse consequences. For older residents, negative consequences of isolation reported included loneliness, low mood, loss of cognitive function²³ and loss of physical function,⁹ and for those living with dementia, a worsening of both cognitive and psychological symptoms.²⁴ Possible adverse consequences for families and friends included loss and grief²⁵ and for CH staff, moral distress, fear and fatigue.^26,27 Our study will complement this early research and make an important contribution to a growing body of national and international evidence in the field.

Structure of the report

This report is structured as follows:

• Chapter 2 reports the study aims and objectives and the methodological approach used to address these.
• Chapter 3 describes the first phase of the study, the rapid review of the evidence on measures used to prevent or control the transmission of COVID-19 and other infectious diseases in CHs for older people.
• Chapter 4 describes social distancing and isolation policies and protocols and routinely collected CH data for the six case study sites in phase 2.
• Chapter 5 explores CH staff perspectives of social distancing and isolation measures implemented in CHs during the COVID-19 pandemic.
• Chapter 6 explores the perspectives of residents and their families of social distancing and isolation measures implemented in CHs during the COVID-19 pandemic.
• Chapter 7 explores the perspectives of senior health and care leaders on social distancing and isolation measures implemented in CHs during the COVID-19 pandemic.
• Chapter 8 presents phase 3 of the study, the development of a toolkit of evidence-informed guidance and resources for health and care delivery, now and for any future outbreaks.
• Chapter 9 discusses the key findings from the study, reviews the approach and methods used, provides suggestions for future research and presents the implications of findings for policy and practice.