Project summary:

Introduction

The COVID-19 pandemic has made increasing demands on the adult social care sector whose remit, scope and forms of service delivery are complex. This complexity and the populations served, render statutory authorities’ adult services and the broader adult social care landscape of providers uniquely vulnerable to the impacts of COVID-19 long-term.

Rapid change has taken place; as the initial crisis begins to subside, it is important to build an evidence base that can inform ongoing planning for the COVID-present and post-COVID landscape in which social care services seek to be effective.

This study is focusing on the impact and the responses at the levels of strategic and organisational planning, operational delivery and individual workforce resilience in response to the pandemic in the Greater Manchester region.

The SECURE study has been designed through a partnership which includes: NIHR School for Social Care Research (Manchester), the Greater Manchester (GM) Health and Social Care Partnership, the Greater Manchester Social Work Academy (GMSWA), NIHR ARC Greater Manchester, the Thomas Ashton Institute, Social Work in the University of Manchester and regional service user and carer partners.

Objectives

The main aim of this study is to explore and understand the medium- and long-term effects of the COVID-19 pandemic on practitioners and organisations providing social work and social care to adults in Greater Manchester at the levels of:

• Strategic and organisational planning
• Operational delivery
• Individual workforce resilience

This encompasses:

• Within organisation strategy and processes (e.g. recruitment, retention, training, support systems, finance)
• Operational practice and service delivery concerns (e.g. assessment, risk, prioritisation, allocation of resources and models of service provision and delivery)
• Staff personal and professional impacts (e.g. mental health, well-being, safety, resilience, sickness absence, support needs)

The objectives of this study are to:

• Establish a working example of a regional adult social care COVID-19 response evidence hub that can be replicated nationally and be an open, shared resource in the sector
• Share the anonymised data collected and meta data as rapidly as possible to the benefit of the adult social care sector and other researchers
• Test the feasibility of scaling up the data collection processes and analysis to a national level study.

Methods

This is a mixed methods study. The project will involve an online survey of social care and social work staff in many different locations including voluntary organisations, care homes and local authorities. This survey includes measures of wellbeing.

The research team will look at routine data that is collected by local authorities e.g. service user numbers, different kinds of assessment and costs. This data will be anonymised and be used to build up a picture during and after COVID-19. Some people will also be invited for interview so that they can discuss in depth their experiences at two points in time.

The data from this project about social care will be compared with other COVID-19 studies underway in the NHS to provide evidence across sectors and workforces.

Project summary:

The aim of this research was to understand the impact of the COVID-19 pandemic on people working in care homes in England. We explored how the pandemic has impacted on the emotional wellbeing of staff, including what is being done and could be done to try and protect and support wellbeing. The research involved remote interviews with care home owners, managers, and staff. Findings will be shared to enable learning about how best to support the emotional wellbeing of care home staff in the future. The project ran from November 2020 – July 2021 and findings are expected to be reported late 2021/early 2022. Please contact Kath if you would like to be involved or find out more.

The project sits under a broader project involving working with care homes: Exeter University, Care Homes and Knowledge (ExCHANGE) Collaboration https://www.arc-swp.nihr.ac.uk/research/the-exchange-collaboration, University of Exeter, College of Medicine and Health. Supported by the National Institute for Health Research (NIHR) Applied Research Collaboration South West Peninsula (PenARC).

Project summary:

Government-led mandates have sought to contain spread of coronavirus and reduce burdens on healthcare systems. This had unplanned impact on older people and their loved ones living in care homes in Scotland through social distancing and reduced personal contact. This research investigates the impact of this on the health and wellbeing of family carers. It also aims to learn from and share positive creative practices. Findings will inform longer term learning beyond COVID-19 about range and methods to support positive interactions between care home residents and their loved ones.

It has applied a mixed methods approach and has included: 35 in-depth interviews with family carers; 19 interviews with key stakeholders, most at senior level; 5 ‘creative cafes’ (or informal group sessions with care home staff); an online survey completed by 444 family carers between 31 Aug -21 Sept 2020.

Project summary:

Background

Scottish care homes are vulnerable to the widespread transmission of COVID-19 and poor outcomes. The COVID-19 pandemic has disproportionately high fatality rates among older adults, particularly those with comorbidities.

Care homes provide health and care services for approximately 40,000 residents, of which the majority are elders with complex medical and care needs.

COVID-19 has had a significant impact on the care homes within Lanarkshire, similar to other local authorities. While there is a plethora of research focusing on the spread of COVID-19 in the general population, research on the unique transmission dynamics and interventions for COVID-19 in care homes is negligible.

Infection control interventions in care homes need to be both effective in containing the spread of COVID-19 and also feasible to implement in this setting which has a dual nature: a healthcare institution and a home.

Research Aims

This research aim to:

• evaluate the effectiveness of a range of interventions strategies in controlling COVID-19 in care homes
• investigate the impact of staff sharing between care homes in Lanarkshire on the inter-facility transmission of COVID-19
• answer emerging questions for care home stakeholders from Lanarkshire

Project summary:

The Covid and Care Research Group are a collective of anthropologists, primarily from the London School of Economics. We draw on a range of methods such as ethnography, network analysis, citizen science and participatory research to understand the impact of the Covid-19 pandemic on the networks of care that animate social life for people across the UK. We explore issues related to gender, ethnicity, race, class and regional inequality. Our research group is collaborative in approach, and works with other disciplines, policy makers, community leaders and community groups across different locations to gain insights into these issues and to generate policy solutions and support local community initiatives.

Project summary:

Introduction

Research suggests that older people are more likely to be affected by COVID-19 than other age groups. Because of this, the places in which older people receive care – residential care homes for older people and private homes – have been identified as settings where extra measures are needed to prevent the virus from spreading between people. These measures have included wearing personal protective equipment (PPE), such as masks, visors and gloves, and physical distancing, which involves keeping a distance of two metres between people where possible.

Initial research suggests that during the pandemic, care workers have felt stressed, vulnerable, and overworked, anxious about infection, and faced challenges in keeping older people safe. Some care workers have also said that they have not had access to the right protective equipment and that using masks can have negative outcomes, such as damaging their relationships with older people.

Objectives

This project is exploring:

1. How the COVID-19 pandemic altered care workers’ provision of direct care for older people living in residential homes and in private homes
2. How care workers perceive and navigate COVID-related policy measures and guidelines in their everyday practices and interactions with older people
3. How care workers negotiate the close and intimate aspects of their work within a context where distancing and infection control are central to ‘good care’
4. How the spatial and material resources (e.g., PPE) used by care workers in a pandemic impact upon caregiving relationships and upon care workers’ ability to find meaning and value in their labour
5. How to improve the provision of care for both care workers and older people and, in particular, what lessons can be learnt for future infection outbreaks.

Methods

The project involves interviews with 25 care workers working in care homes for older people in England, and 25 care workers working for home care agencies in England, to find out how the pandemic has changed their work.

Project summary:

The need for rehabilitation for COVID-19 patients is escalating. The team will develop and evaluate a training package for NHS/social care staff to support them during remote assessment and management of COVID-19 patients requiring rehabilitation. This is challenging to do remotely, as balance and mobility cannot be easily assessed. The staff will be provided with practical guidance and training to increase their skills.

Project summary:

In this 17-month study we will provide evidence of the experiences of people employing their own care workers (Personal Assistants – PAs) during and after the Covid-19 pandemic to inform and improve care practice. Our previous work has asked PAs about their work during the Coronavirus pandemic. This new study will ask people who employ PAs about their experiences during the time of lockdown and beyond. We want to talk with people from different background and circumstances (e.g. those who may have ‘shielded’ or have a particular risk factor) and with both people who pay for a PA by Direct Payments from the council and those who pay their PA independently.

We will interview 70 individual employers (care users) and family members (if they are the employer because their relative cannot manage these arrangements), to learn from their experiences. We will also interview people from 5-6 brokerage or support agencies that help people find possible PAs, or support PA employers. The interviews will be done by phone or by video. We will examine and compare people’s experiences so that we can learn from them about the main pandemic period and beyond (if the virus declines) and to produce reports and outputs that are useful.

Project summary:

Domiciliary Care Workers (DCWs) are employed in both public and private sectors to support adults at home. The support they provide varies but often includes personal care, which demands close contact between care worker and the person being supported. Since the start of the COVID-19 pandemic, people working across the care sectors in England and Wales have experienced higher rates of death involving COVID-19 infection. Social care workers, in both residential and domiciliary care settings, have been particularly badly affected, with rates of death involving COVID-19 approximately double that for health care workers. We aim to generate rapid high-quality evidence based on the views of care workers and by data formed from linking care workers’ registration data to routine electronic heath record (EHR) data. We can use this information to inform public health interventions for safer working practice and additional support for care workers.

Project summary:

The WHELD well-being training intervention for care homes has shown benefits in two clinical trials by improving quality of life, mental health and reduced use of sedatives, and has been developed for virtual supervision. It has now been adapted to the COVID-19 context and evaluated in a RTC; an “implementation ready” programme will then be rolled out for care homes nation-wide.

Project summary:

UCAIRE (Exploring and Understanding the lived experience in CAre homes for older people of Infection risk and transmission during the COVID-19 pandemic: a mixed-methods study to inform what we can learn for future infectious disease outbREaks) is a one-year, mixed-methods study, funded by NIHR SSCR, running until May 2022.

Aim: to explore how older care-home residents, care-home staff and families or friends of residents experienced coping with preventing spread and transmission of the SARS-CoV-2 virus in order to inform development of guidelines and support in managing future outbreaks of infectious diseases in care homes and in providing support to those living and working in care homes.

Objectives:

1. Undertake an online survey of care-home staff to identify broad concepts and specific issues or concerns associated with transmission and spread to and within older people’s care homes.
2. Undertake semi-structured interviews with care-home residents, families/friends and care-home staff to understand their experiences of coping with preventing infection-transmission and risk during the pandemic.
3. Using a mixed methods approach, integrate findings from the quantitative and qualitative arms of the study in order to gain comprehensive understandings from which results and overall guidelines can be developed. Draft guidelines will be further developed at a stakeholder workshop near the study end, in which stakeholder perspectives and input will help to tailor the guidelines appropriately for specific audiences: care-home staff, residents and family/friends of residents.

Project summary:

This project addresses the impact of COVID-19’s on the care home sector including the consequences for the workforce and users while assessing its financial viability, as well as requirements for recovery and resilience.
The UK depends on the financial sustainability of the mainly privately-owned care home sector, which cares for over 400,000 older people. Prior to the pandemic, the Competition and Markets Authority 2017 report highlighted the financial fragility of the sector. It is clear that COVID-19 has exacerbated financial pressures on care homes, potentially leading to highly disruptive closures.
Although there is a growing understanding of the additional costs to the care home sector attributable to COVID-19, there is a lack of knowledge about the implications for the financial sustainability of the sector as a whole, as well as for different types of organisation (e.g. large chains, charities, family-run care homes). Yet, it is essential for policy makers to comprehend these financial impacts if they are to design effective interventions to ensure the stability of care home provision, maintain safe standards of care and deliver good quality services. This new research will complement the analysis of care costs being undertaken by other relevant research conducted by the ESRC Sustainable Care programme.

According to the 2019 report produced by the Skills for Care charity, the 600,000-strong care home workforce is characterised by low pay, high staff turnover and vacancy rates, and reliance on migrant labour. Given the difficulties in recruiting and retaining care home workers prior to the pandemic, policy makers also need to understand and address the financial impact of COVID-19 on staff experiences and efforts to retain staff.

Project summary:

The study aims to explore the impact of providing health and social care during the Covid-19 pandemic on nurses, midwives, allied health professionals, social care workers and social workers in the UK. The study uses a cross-sectional design to collect data from a convenience sample of nurses, midwives, allied health professionals, social care workers and social workers over five time points: May – July 2020, November 2020 – February 2021, May – July 2021, November 2021-February 2022 and May-July 2022. Data is collected using a self-report online survey consisting of demographic questions, measures of wellbeing, work-related quality of life, coping and several open-ended qualitative questions. Survey data will be supplemented with data gathered through focus group discussions with frontline workers, their managers/regulators and HR representatives.

Project summary:

Aim: To understand how COVID-19 has affected the quality of life, wellbeing, and care of people diagnosed with dementia and their family carers?

The COVID-19 nested study will used a mixed methods design within phase 2 of the wider TFD study. Quantitative measures of Quality of Life, Social functioning and illness severity before, during and after the social restrictions arising from the pandemic will be assessed. Additionally, qualitative interviews will be used to understand the experience in more depth, as well as factors which have specifically influenced QoL.

Design: This study will use a mixed methods approach; quantitatively measuring QoL, before, during and after the COVID 19 isolation period, and qualitatively, through semi structured in-depth qualitative telephone interviews to explore the impact in more detail.

Participants: Existing family carer participants (n=350) in the BSMS Time for Dementia (TfD) study will be invited to participate in this COVID 19 sub-study. TfD is a longitudinal undergraduate dementia education programme with a linked study running across Kent, Sussex and Surrey which directly involves people with dementia and their family carers. All of the potential participants have pre-COVID 19 QOL data that can be used as a baseline comparator.

Measures: DEMQOL-Proxy (Smith et al., 2007)

The Clinical Dementia Rating Scale (CDR; Morris, 1993)

SF-DEM: Social Functioning in Dementia scale, (SF-DEM; Sommerlad et al, 2015)

C-DEMQOL (Brown et al, 2018)

Project summary:

Older people living in care homes often have complex needs and are at high risk of poor health outcomes and mortality especially if they contract the coronavirus. To protect older people from the coronavirus, care homes use measures such as social distancing and isolating of residents. The care home sector has stated that implementing social distancing and isolation when caring for residents is a significant challenge. Currently, we do not have a good understanding of this challenge and how best to address it.

The aim of our research is to explore and understand the real-life experiences of implementing social distancing and isolation of residents in care homes for older people from the perspective of residents, families/friends, staff working in and with care homes, and to develop a toolkit of resources for health and care delivery now and to support further outbreaks of the coronavirus.

This 12-month study will be conducted in three phases; a rapid evidence review, in-depth case studies, and toolkit development.

Project summary:

As a result of the COVID-19 pandemic, most care homes have stopped face-to-face visiting. In many care homes contact between residents with dementia and their families are limited to telephone, digital methods or through windows. Other homes have created COVID safe spaces where families can visit from behind a Perspex screen or at a social distance in gardens. Government guidance on visiting has changed numerous times over the pandemic, varies according to national and regional lock-down guidelines and is open to wide interpretation in the sector. Most of these approaches can be extremely difficult for people with dementia to engage with (due to not understanding why they cannot touch/hug their relative, why they are behind a screen etc) and gain comfort from. They may cause more distress than well-being for some residents and may be impossible for those with advanced dementia to take part in.

This topic is being discussed and debated widely in the news on a daily basis and evidence-based information and resources to support development of good-practice approaches in this area is required rapidly.

Our research aims to explore current visiting practices for relatives of care home residents with dementia across England, best practice approaches and barriers and facilitators to these.

Our study will involve

• Rapid literature and practice review (via databases, social media, grey literature, on-line sources, media) of the evidence in this area and to develop a taxonomy of visiting practices related to relatives/friends of care home residents with dementia, pros and cons of these and barriers and facilitators to adopting them
• National on-line surveys of relatives/friends of people with dementia living in care homes and care home providers in England – to identify how widely different approaches to visiting are being employed, their impact, reasons for use and barriers and facilitators to offering the least restrictive approaches to visiting.
• In-depth telephone/video interviews with around 10 relatives and 10 care home managers/senior staff in England – to identify good practice (least restrictive approaches to visiting) and how these might be implemented more widely e.g. what needs to be in place

Project summary:

This study aims to evaluate the impact of the pandemic on health service provision and outcomes and provide evidence required to inform the future effective, safe management of care home residents. We will analyse linked care home, community, Emergency Department and hospital admissions data from the North East (n=68 homes, >2500 residents) spanning from before to the initial lockdown period to the present. Interviews with care home staff, residents and their families will be conducted, giving deeper insight into decision making processes and the impact those affected, allowing for an in-depth description of the pandemic in the care homes of the North East.

Project summary:

Summary:

Aim: To capture the experiences of frontline care home and NHS staff caring for older people with COVID-19 and to share the lessons learnt about the presentation, trajectories, and management of the infection with care homes that have and have not yet experienced the virus. We addressed this overall aim through the following objectives: To understand the clinical presentation and illness trajectories of COVID-19 for older people (aged over 65 years) being cared for in hospital and care homes; To describe what worked well and what more is needed for care and treatment of older people with COVID-19; To identify key lessons for supporting infected older people to recover well or, if that is not possible, to die well; To share findings and lessons learnt (objectives 1 to 3) with care home senior staff to explore useful strategies for managing the infection at an individual and organisational level within the home for the mutual benefit of residents, relatives and staff; and To explore the resonance and relevance of lessons learnt (objectives 1 to 4) with care home providers and to identify any gaps. Method: We used an appreciative approach, working across disciplinary boundaries and care settings. In phase 1 (June and July 2020) we interviewed 35 frontline staff (18 care home and 17 NHS staff) to address objectives 1 to 3 and gather in-depth understanding. In phase 2 (September 2020) we hosted a consultation event with 11 senior operational and quality managers in care homes to establish the resonance, relevance, and any gaps in relation to Phase 1 findings and strategies for managing COVID-19 at an organisational level within the home for the mutual benefit of residents, relatives and staff. All data collection was conducted remotely by video or telephone call.

Project summary:

Long-term care services, in particular care homes, have been badly hit by the COVID-19 pandemic but to varying degree across countries. Between 0 and 80% of all cases of COVID-19 deaths have occurred among care home residents, while it is currently under-researched how home care users and LTC staff are affected. There is also considerable variation in the timing, sequencing and content of measures applied, on a general societal level, as well as in those applied in the LTC sector specifically, such as care home lock-downs and access to PPE and testing.

There is urgent need for policy makers and LTC provider organizations to learn from the emerging evidence, not the least in Sweden with comparably high death rates in society as a whole and in the LTC sector. Therefore, the aim of this scoping review is to identify and learn in a systematic way how older LTC users especially but also care workers and whole provider organizations are affected by the COVID-19 pandemic and the measures introduced. The review will focus on different measures and their effect on disease spreading and mortality among users and staff, as well as the effect on wellbeing and Quality of Life among users. When possible, the review will consider variation related to gender, class, ethnicity, and region in user outcomes.

We will map the emerging body of evidence, identify research gaps, and make recommendations for future research. The review is used also to inform six case studies (D, DK, ES, N, S, UK), presenting a time line of measures introduced and infection and mortality rates in LTC. In comparison to the review, this will have the country as a focus and will provide a more in-depth understanding of the relations between measures and outcomes, which will allow us to report on best practices and knowledge gaps.

Project summary:

We will collect baseline and follow-up qualitative data from older adults, people with dementia, and family carers, and hold focus groups with care professionals, to explore the long-term impact of COVID-19 public health measures on their mental health. We will also hold coproduction workshops in each country to develop strategies to address mental health and well-being in each country and develop an external funding application. We will then compare how public health measures are affecting these vulnerable groups across the three different LMICs, to generate better understanding on how to support their mental health better during this ongoing pandemic.

Project summary:

The Mc-COVID 19 project is set to analyse the socio-sanitary co-ordination procedures in the context of institutionalized older-age care (age group that appears particularly vulnerable in this epidemic context), in Spain as well as in the rest of the EU-15. This study focuses on the articulation of resources between health and social policies, and aim to contribute to improve the effectiveness of the decision-making process and crucial aspects in the fight against the pandemic. To better understand what happened in these centres and facilitate policy learning, this study identifies the difficulties faced by institutional actors and nursing homes’ managers between January and August 2020. To this end, the research team conducted 25 in-depth interviews with managers in such centres (directors, administrators, and medical supervisors) in various Spanish regions (Comunidades Autónomas). In addition, the research group interviewed high-ranking officials responsible for both social services and public healthcare at the central and regional levels, and representatives of the trade unions and the employers’ associations of the nursing homes. Furthermore, the team examined documents issued by governmental and independent sources, together with the results of a survey elaborated by the Institute for the Older-age and Social Services (IMSERSO) of the Ministry of Health. Findings aim to be useful to inform other public policy sectors involved in crisis-related situations.

Project summary:

We use nationally representative administrative data to describe the impact of COVID-19 among residents in the English care homes and the financial viability of the sector.

Using data from all care homes in England we estimated overall excess deaths and by care home characteristics: setting type (nursing or residential home), client types (offering services for people aged 65+ and/or people with dementia or offering services to children and adults), ownership status (whether not-for-profit – charity/NHS/LA-run homes – or for-profit), whether known to be affiliated to a large provider/brand or independent, and classification according to their registered maximum bed capacity (small, medium and large). Using data from the Capacity Tracker and CQC we’re examining how care home ownership and local care market structure are associated with the probability of experiencing and dealing with COVID-19 outbreaks in the English care homes.

Project summary:

COVID-19 has had a devastating impact on care homes, their residents and families, and staff. Over 20,000 care home residents in England have died from COVID-19 to date. Many more have experienced symptoms and distress. Palliative care is an essential component of the pandemic response, but there has been limited examination of palliative and end-of-life care provision in English care homes during COVID-19, or strategies to improve this during subsequent pandemic peaks.

The study aims to examine the response of care homes in England to meet the rapidly increasing need for palliative and end-of-life care for residents during the COVID-19 pandemic, and make recommendations for policy. The main objectives of the project are:

1. 1. To describe the response of care homes to palliative and end of life care needs during the COVID-19 pandemic, and the experiences, preparedness and impact on the workforce.
   2. To explore in-depth the challenges and facilitators to providing palliative and end of life care in care homes during the pandemic.
   3. To make recommendations for policy and develop guidance that helps to improve and sustain palliative and end of life care during current and future pandemic peaks.

Project summary:

Palliative care and end of life care responses must be urgently evaluated to understand how they are responding to the COVID19 pandemic and how they can be improved, in terms of services, workforce and symptom management. The findings will provide insights to inform a coordinated and effective response and will be provided to the National Health Service and Public Health England.

Project summary:

Staff turnover and job vacancy rates are persistently high in UK social care. Understanding the drivers of staff retention and motivators of care staff is important to enable the sector to provide sustainable, high-quality services and meet increasing demand. This project, which runs between April 2019 and March 2022, aims to help social care providers, commissioners, regulators and policy-makers understand the specific organisational and individual drivers of staff retention in the social care sector by exploring:

• What specific characteristics do social care workers have, and how committed are they to their jobs, when compared with workers in other low-wage service industries?
• Why are there differences in retention rates between social care providers, and between social care and other low-wage service industries?
• Why do care workers decide to leave their jobs, and why do some job leavers choose to leave the social care industry altogether?
• What is the impact of COVID-19 on workforce retention and sustainability?

We are answering these questions by:

• Analysing existing data from national surveys and large datasets, primarily: the UK Quarterly Labour Force Survey; the Annual Survey of Hours and Earnings; the Employer Skills Survey; the National Minimum Dataset for Social Care (NMDS-SC); the Skills for Care survey of individual employers and personal assistants; and the Care Quality Commission (CQC) health and social care provider register.
• Collecting primary data on the impact of COVID-19 on the social care workforce by means of: a) a ‘pulse’ workforce web survey; and b) a longitudinal (two wave) telephone survey of care workers.
• As well as carrying out the data analysis, we will consult and work closely with adult social care stakeholders, including providers, care users, care workers, family carers, commissioners, regulators and policy makers. We will organise annual workshops across the country to gather views on emerging findings and generate examples of ‘good working conditions/quality jobs’ in the social care industry, and pathways to achieve these nationally.

Project summary:

The project

The Social Care COVID Resilience & Recovery project will draw together learning from scientific evidence and from international experiences of long-term care systems. The aim is to inform policy and practice as the social care sector in England grapples with, and recovers, from Covid-19, and to put the sector on a more resilient footing for the longer-term.

The project is funded by the National Institute for Health Research (NIHR) and is a collaboration between the Care Policy Evaluation Centre (CPEC) at the London School of Economics & Political Science (LSE) and the Nuffield Trust, with support from the National Care Forum.

Why is this work important?

The ongoing outbreaks of Covid-19 have had an enormous impact on those who use and provide long-term care in England, with substantial excess mortality both for people who use home care and who live in care homes. It has also had far-reaching implications for the mental and physical health of those in contact with the system and has put major financial pressure on care providers.

As England continues to grapple with Covid-19, and begins to look towards the post-covid recovery process, there is an opportunity to learn from international experiences in preventing, mitigating and recovering from waves of infection. There is also an opportunity to identify the underlying factors and pre-existing faultlines within the system that meant the sector was in a fragile state as it went into the pandemic, and to learn from elsewhere about how to put the system on a more sustainable and resilient footing in the long-term.

What are planning to do?

Our primary research question is: What can we learn from international evidence and experiences in order to support the recovery of the social care sector to inform the development of policies to prevent and manage future outbreaks in social care settings in England?

The project aims to:

• Co-develop a framework to provide strategic direction for how the whole social care sector (not just care homes) in England can recover from, and be better prepared and more resilient to, ongoing and future pandemics;
• Synthesise international evidence on Covid-19 and lessons relevant to the English social care sector;
• Draw together learning to support the sector’s recovery and to inform the development of policies to improve the resilience of the sector in the long-term.

Our approach

The project is split into four work packages, comprising:

1. Workstream 1: Situational analysis and development of analytical framework. This phase will seek to understand the impact of the Covid-19 pandemic on people who use and provide social care in England; of the policy and practice responses to mitigate those impacts; and the factors that supported or hindered the implementation of policies in England. We will use this situational analysis and a Theory of Change workshop to establish a framework from which to assess the relevance of international experiences and evidence to the social care system in England. In parallel, we will start a living report on international experiences in order to identify opportunities for lesson learning;

2. Workstream 2: Scoping reviews of existing evidence. Evidence reviews to map and synthesise empirical evidence of key policy and practice measures to prevent and mitigate the impact of the pandemic, and barriers and facilitators of implementation of those measures;

3. Workstream 3: International case studies. We intend to identify four case study countries whose experiences during covid-19 offer relevant learning for the English social care system. In-depth learning will be drawn together about the resilience of the system as it entered the pandemic; the policies and processes adopted to mitigate the impact of Covid-19; factors that helped and hindered; and what measures are being taken to support recovery.

4. Workstream 4: Synthesis. Lastly, findings across all these workstreams will be synthesised, using the framework developed in workstream 1, and recommendations developed for policy and practice.

The research team is supported by a Public Involvement and Engagement Group and an advisory group of experienced academics and representatives of key stakeholder organisations. These groups act as critical friends, ensuring that the project is relevant and of high quality and will provide links with other groups carrying out relevant research or with other stakeholders with an interest in this area.

Timescale

The project started in January 2021 and will end in October 2023.

Project summary:

Both dementia and hearing loss are highly prevalent in care home residents and often lead to poor outcomes such as impaired communication and reduced quality of life. Despite this, previous literature suggests that hearing loss is often poorly managed in care homes, particularly for residents living with dementia. It is likely that COVID-19 has exacerbated existing communication difficulties and access to hearing rehabilitation. For example, by the use of face masks and visors, audiology visitation restrictions, social distancing and other measures. This study will address the driving factors for providing hearing loss support and barriers to doing so in the care home setting, taking into account the COVID-19 pandemic within care homes.

The study adopts a mixed-methods approach with both online surveys and follow-up semi-structured interviews. Participants include frontline care home staff such as registered nurses, care workers and other healthcare professionals.

Project summary:

This research project focuses on whether ownership is relevant to the severity of COVID-19 outbreaks in the nursing home sector. It carries the title ‘The COVID-19 outbreak in the nursing home sector – does ownership matter?’

This research consists of (at least) two parts. Firstly, it will provide a rapid review of the evidence available on this topic. Secondly, this project will follow a case-study approach to embed the findings in their respective national context. This part of the research project will be our main contribution. We will use input from various countries (e.g. Canada and Australia) to draw conclusions. If there is sufficient data, we will analyse the relationship between the composition of the long-term care sector (i.e. for-profit providers’ share of total beds in nursing homes and/or number of homes) and the share of COVID-19 deaths in the long-term care sector across different countries.

Project summary:

Our qualitative interview study aims to explore the experiences of family carers whose loved ones with dementia reside in a care home, and the experiences of care home staff of providing care during the pandemic. We are aiming to recruit around 20 family carers and 20 care home staff across the UK, and our study will be completing data collection in November 2020.

Project summary:

The aim of this COVID-19 related study is to explore the experiences for family who are unable to visit their relatives who permanently reside in a care home. This relates to ‘usual’ family visits as well as compassion visits that may be made at a time when end of life (EOL) procedures would be followed. We want to understand current interactions between family and their relatives living within a care home during the period of a UK-wide lockdown and continuing after care home visits are allowed by family.

It is proposed through the findings from this COVID-19 care home study to co-develop resources that facilitate good practice with practical messages of how family can be actively engaged in the continuing care of a loved one in a care home when restrictions may be in place. For example, this can occur when there is an outbreak of a more common infection and the care home is restricting visitors.

Methods: Qualitative ongoing virtual interviews with family carers

Project summary:

Schedule 12 of the Coronavirus Act 2020 included the unprecedented power for local authorities to suspend the majority of their adult social care duties under the Care Act 2014. The suspensions are known as “easements”. Eight local authorities triggered easements at the height of the pandemic, and many others withdrew services nevertheless. Under the pandemic, triggering easements remains part of the strategic planning of a number of authorities. Yet we know very little about the consequences for people with high levels of need, such as older carers of partners with dementia at home. This research investigates these consequences. We want to compare experiences in different local authorities for older carers, and investigate this issue also from the point of view of safeguarding and social work leads, who were making difficult decisions in crisis circumstances. Through doing this we seek to understand in a balanced way the wider social impacts and legal implications of this suspension of legal rights.

Project summary:

This project aims to provide a rapid synthesis of published studies of mortality rates and incidence of COVID-19 among people living with dementia.

Research questions:

1. What is the relationship between Covid-19 restrictions (including lockdown) and the cognitive, psychological and functional symptoms among people with dementia living in the community?
2. What is the relationship between Covid-19 restrictions (including lockdown) and the cognitive, psychological and functional symptoms among people with dementia living in care homes?

We will follow PRISMA guidelines (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) for conducting the review and preparing the report. We developed search terms for three databases (Pubmed, PsychINFO and CINAHL) to identify all studies reporting primary data on the effect of COVID-19 isolation and confinement measures on people living with dementia. Included studies are in English language only and will be critically appraised using the Joanna Briggs critical appraisal tools. All study designs will be considered for inclusion. We extracted information related to cognitive measures, psychological symptom, activities of daily living and changes in medication (primary outcome measures) along with tools used to measure symptoms, setting where the study is conducted (e.g. community, day clinic, care home), sample size and dementia type (when reported) of participants. Evidence will be synthesized narratively.

Project summary:

This project has three research questions:

1. What are the wellbeing, health and social effects of the COVID-19 pandemic, including social restrictions and changes to how people are supported, on the lives of adults with learning disabilities across the UK over time?
2. What actionable factors are associated with better outcomes for: a) people with mild/moderate learning disabilities; b) people with severe/profound learning disabilities?
3. What urgent issues concerning people with learning disabilities are emerging over time?

Longitudinal data will be collected 3 times in the 12-month project (1 Sept 2020 to 31 Aug 2021) from two purposively sampled cohorts across the UK: 1,000 adults with mild/moderate learning disabilities (interviewed directly via telephone etc by research interviewers); and 500 adults with severe/profound learning disabilities (via online survey with carers). Core data will include wellbeing, health (including COVID-19), the impact of COVID-19 on wellbeing, lifestyle and finances, living circumstances, and changes in support received. Additional questions at any wave will be determined by the process outlined below.

These surveys will take place within three repeated cycles:

Step 1: Collaborating organisations and policy-makers across the UK bring forward urgent issues, and select with researchers additional questions for the next survey wave

Step 2: Surveys are conducted

Step 3: Survey results are rapidly analysed, shared with policy-makers, and disseminated in multiple (including accessible) formats.

Project summary:

Led by the UK, we are collecting qualitative and quantitative data on the experiences of public health measures on the lives of people living with dementia and unpaid carers in the UK, Australia, Poland, Italy, and India. This involve telephone semi-structured interviews with up to 25 participants in each country, as well as follow-up interviews in the UK and Australia. These findings are complemented by an online and telephone survey. This study will provide the very first international comparative analysis of the impacts of the pandemic on dementia.

Project summary:

Introduction

COVID-19 is having a significant impact on people in need of care and support and on social care services. The Coronavirus Act 2020 became law early in the pandemic. Some of its changes relate to English local authorities’ (councils’) social care duties, particularly ‘easements’ which allow them to radically change what they do under the Care Act 2014 and how they do it (for example, postponing reviews or changing a person’s care arrangements or not supplying care at all). There have been no studies of how this new Act has been affecting: Councils, the people working in them, and people receiving Care Act services.

Objectives

This study is investigating how the changes of the Coronavirus Act were put in place in social care by:

• mapping which local authorities applied for Care Act easements, exploring why and for which activity(ies)
• exploring the impact of the Care Act easements on practice and on service users/ carers affected, and whether the aims of seeking easements were realised.

Methods

This study is taking an exploratory research design drawing on document analysis and qualitative data collection, including through expert interviews and interviews with staff, people who use services and carers.

Resources

Project website: https://www.kcl.ac.uk/research/easements-to-the-care-act

Project summary:

The VIVALDI study, investigates the epidemiology of SARS-CoV2 infection amongst care home residents and staff in England, through collaboration with a range of Care Home Providers.

We will undertake a cohort study collecting serial blood samples from staff and residents in c.200 care-homes in England. Blood results will be linked to results from nasopharyngeal PCR swab testing undertaken through the national testing programme. Results of nasopharyngeal PCR testing will also be collected from a further >100 homes where blood samples were not collected. Data collection began in June 2020 and will end in April 2022.

The data will be used to investigate the proportion of staff and residents who become infected with SARS-CoV-2, the duration of the antibody response and the vaccine-induced immune response.

Data linkage with hospital episode statistics and mortality data will provide insight into outcomes and transmission amongst staff and residents. Linkage of PCR testing data with information on hospital admissions, and analysis of viral sequencing will provide insights into:
• the patterns of disease transmission within care homes,
• the role of high-risk groups,
• how often infection is either imported from or exported to care home settings from the community or hospitals.

This work will provide robust data to inform optimal approaches for SARS-CoV2 control and prevention within care homes. Individual level-data will be made available to individuals involved in provision of direct care to residents. Aggregate data outputs (at regional and national level will be made widely available.

Primary Objectives:
• To estimate the proportion of care home staff and residents who have been infected with SARS-CoV-2 and investigate how this varies by care home characteristics and individual-level characteristics.
• To monitor vaccine effectiveness against laboratory-confirmed SARS-CoV-2 in care home staff and residents, and outbreaks

Project summary:

The UK Pandemic Ethics Accelerator harnesses and mobilises the UK’s internationally renowned expertise in ethics research. Four major UK universities and the Nuffield Council on Bioethics form the collaborative which has received £1.4M funding from the Arts and Humanities Research Council (AHRC) as part of the UK Research and Innovation rapid response to covid.

The Accelerator provides rapid evidence, guidance, and critical analysis to inform policy and help improve decision–making. It also supports, informs and promotes public debate around key ethical challenges, and ensures that ethical thinking is embedded at the core of future pandemic preparedness.

The Accelerator covers a variety of policy domains, and has recently authored several outputs relating to social care.

Project summary:

THRIVE aims to understand Nursing and Midwifery Council (NMC)-registered nurses’ experiences of working in care homes for older people during the COVID-19 pandemic, how this impacted on resilience, mental health and well-being, and to collaboratively develop theory-informed approaches for ongoing and future support in this professional group.

The study is being undertaken in two phases:

• Phase 1: Key-informant interviews with NMC-registered nurses practising in care homes to describe and understand their distinct experiences of working during COVID-19 and its impact on their resilience, mental health and well-being, including the availability and appropriateness of support. This phase is now complete, and preliminary findings were presented at the LTCcovid International living report on COVID-19 and Long-Term Care, 06/12/2021 (https://ltccovid.org/international-living-report-covid-ltc/)

• Phase 2: Undertake a series of deliberative workshops to discuss findings and issues through constructive, co-produced dialogue to consider ideas (old and new) for developing strategies and interventions that support care-home nurses’ resilience, mental health and well-being. This phase is ongoing, but we expect to report early 2022.

Project summary:

Visit-id: a study of care home visiting arrangements during Covid-19 is being conducted by a team from the Care Policy and Evaluation Centre (CPEC), London School of Economics and Political Science, led by Josie Dixon with Klara Lorenz-Dant, Edmund Stubbs and Manna Mostingham, Karen Harrison-Dening and Daniel Casson.

It is funded by the National Institute for Health Research (NIHR), Policy Research Programme as part of its Recovery, Renewal, Reset: Research to inform policy responses to COVID-19 in the health and social care systems funding call. It runs from 2021 to 2023. It is supported by a steering group involving senior representatives from Dementia UK, Alzheimer’s Society, Healthwatch, Carers UK, HC-One, Care England, Jewish Care, Freemantle Trust, Glasgow Royal Infirmary/University of Glasgow and Sheffield CCG and by a reference group of four experts-by-experience with close relatives living in a care home during the pandemic.

Project summary:

Rapid review to gather evidence for the ways in which care homes have arranged communication between themselves, residents and family carers. This may be at a time of enforced closure, such as due to the SARs virus or C-19 or reporting empirical work which has been undertaken to explore use of different approaches such as use of technology (SMART phones, iPad, Facebook Portal).

It is proposed that the findings of this review will highlight good practice which could be implemented within the current restrictions to care homes across the globe but also for ‘distance’ carers across all age spectrums and different types of care settings, i.e. facilities for older people, learning disability, respite and short-term care provision.

Methods: Rapid review of empirical published studies

Project summary:

The aim of this study was to identify the lived experiences of care home staff in implementing new infection control measures (including PPE) in care homes early on in the COVID-19 pandemic and how these impacted on the residents they cared for. We were also interested in understanding how the perspectives of staff in different occupational roles may differ as well as identifying the sources of support available to staff.

Project summary:

Carers UK’s ‘Caring Behind Closed Doors’ work involved two online surveys in Spring and Autumn 2020, with 5,047 and 5,904 respondents respectively, designed to capture and draw attention to the impact of the COVID-19 pandemic on unpaid carers across the UK. The first survey focused on the initial ways in which the pandemic affected carers’ lives (for example increased costs, difficulties accessing supplies), whereas the six months on report was able to reflect on the ongoing impact on mental and physical health and carers’ needs for support during the approaching winter months.

Project summary:

This study, conducted in 2020, explored carers’ experiences of staying in touch with family and friends living in care homes during COVID-19, during which many care homes have had no or restricted visiting. Participants included carers of the following groups: people living with dementia; older adults; people with learning disabilities/intellectual disabilities and/or autism; people with sensory or physical disabilities.

The aim of the study was to learn what worked well, what did not work and what we can learn for the future, and inform our understanding of how families, friends and care home residents can keep in touch when carers can not visit as often as they would wish; if for example, they are ill, live at a distance, have other caring or employment responsibilities, or if homes have to close due to infection.

The main findings highlighted the variety of ways which were employed to keep in touch, and the need for a personalised approach; the paramountcy of face to face visiting, especially for those for whom no successful means of remote contact had been established; the pain of separation; the importance of a trusting relationship with the care home. Carers were asked for, and provided, advice for other carers, and for care homes.

Project summary:

Between July and November 2020, twenty practitioners working in care homes or allied services took part in a series of interviews, focus groups and photovoice exercises in order to communicate their lived experience of the coronavirus pandemic. Three family members of people with dementia who are or were living in care homes during the pandemic also took part as experts by experience.

Project summary:

We are aware that many care home staff are finding it very challenging to respond to the pandemic in many ways. These include following evidenced-based guidelines and managing their fears in their day to day work. We wish to invite a wide range of providers working across the region who provide care towards vulnerable people living in residential settings, their own homes and supported housing to share the ways in which they have responded to the pandemic. We want to understand the different ways in which they have sought up-to-date information, the usefulness of that information and the ways in which they have used this to share their knowledge and expertise with others across the sectors.

During the pandemic, we will produce resources where gaps have been identified in knowledge and facilitate practical evidenced-based solutions to the problems facing the care home sectors. We will also determine if longer-term lessons can be learnt about bridging the gaps within and between different health and social care providers.

Project summary:

We use nationally representative administrative data from all care homes in England to estimate overall excess deaths and by care home characteristics: setting type (nursing or residential home), client types (offering services for people aged 65+ and/or people with dementia or offering services to children and adults), ownership status (whether not-for-profit – charity/NHS/LA-run homes – or for-profit), whether known to be affiliated to a large provider/brand or independent, and classification according to their registered maximum bed capacity (small, medium and large).

Project summary:

We conducted 15 interviews, some with family carers, some with people living with dementia, and some with both, between January 2020 and May 2020. Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID19 pandemic.

Project summary:

Identification and analysis of hospital discharges during March to May 2020 from NHS Scotland hospitals into care homes. Includes methodology, testing status and demographics of those discharged, then goes on to define and describe care home outbreaks with an analysis of the factors associated with those outbreaks.

Project summary:

Overview

This project is a Cochrane rapid review focusing on the effects of non-pharmacological interventions implemented in LTCFs to prevent SARS-CoV-2 infections and their consequences.

Project summary:

Population analysis of COVID-19 testing, cases and deaths in care homes in a single region of Scotland

Project summary:

Retrospective observational study, we collected demographic data, mental health diagnoses, clinical diagnosis of COVID-19, symptoms, management, and COVID-19-related outcome data of inpatients aged 65 years or older or with dementia who were already inpatients or admitted as inpatients to five London mental health Trusts, between March 1 and April 30, 2020, and information about available COVID-19-related resources (i.e., testing and personal protective equipment). Patients were determined to have COVID-19 if they had a positive SARS-CoV-2 PCR test, or had relevant symptoms indicative of COVID-19, as determined by their treating physician. We calculated period prevalence of COVID-19 and analysed patients’ characteristics, treatments, and outcomes.

Project summary:

This 2-year study (ending 31 Jan 2021) is investigating the use of ‘residential respite’ services (e.g. a short stay in a care home) which provide a break for both people with dementia and their carers.

Qualitative interviews are being undertaken with people with dementia and carers covering the use, take up and experiences of residential respite, including possible barriers to uptake, or the views of those who have chosen not to use residential respite even if available and affordable. Since the study was originally approved, further questions in relation to the context of Covid-19 have been added. We are asking interviewees about views on whether residential respite will be offered and acceptable in the future and what these may look like, as well as any alternative plans they have made for future lockdowns or local outbreaks. We are also seeking the views of Stakeholders regarding changes to residential respite provision within the context of Covid-19. For more information, see https://www.kcl.ac.uk/scwru/res/capacity/respite

Project summary:

In April, we conducted 50 telephone-based semi-structured interviews with people with dementia and unpaid carers about their experiences of accessing social support services during the pandemic. In June/July, we conducted 20 follow-up interviews to see how these experiences might have changed. We have so far shown how detrimental the lack of social support service usage has been to people with dementia and carers, and how people with dementia have deteriorated much faster.

We also conducted a complementary, longitudinal, online and telephone based survey from April to August. We asked people with dementia, carers, and older adults about their social support service usage before the pandemic and at three time points, as well as about their mental health. So far, we have shown already how much reductions in service usage have been linked to poorer mental health.

Project summary:

Introduction

The public health measures imposed to contain Covid-19 during the first UK lockdown resulted in significant changes in the provision of community support and care for people with dementia. People with low prevalence and young-onset dementias often experience non-memory, behavioural or neuropsychiatric symptoms that require specialised support.

Objective

We explored the impact of the first Covid-19 lockdown on people living with low prevalence and young-onset dementia and their carers in the UK.

Method

An online survey, including eleven questions about the impact of the lockdown on both the person with dementia and their family caregivers was conducted. Participants were people living with dementia and caregivers who are members of the UK national-reach organisation Rare Dementia Support.

Project summary:

Ancillary or housekeeping staff in care homes – cleaners, those working in kitchens, laundries, maintenance – have been crucial during the coronavirus crisis given their role in infection control, food preparation, and help with social distancing. But they are traditionally overlooked by policymakers and commentators. What they have done and the challenges they faced during the crisis have been understated and hidden. Many are women with families, work part-time, and on shifts, and often are from migrant or minority ethnic backgrounds. We know they are not well paid. Some sadly died from the virus.

We want to find out whether and to what extent these workers were prepared and supported in their roles during the pandemic. This will help meet a gap in policy – how to better support this staff group work to prevent coronavirus, help those with it, and with service reset and recovery.

Our research unit’s PPI group will advise us and support this study. Many members have personal experiences as family carers of people living in care homes and of wider social care services. They have helped us already by encouraging inclusion of residents and relatives, emphasising the idea that everyone should have an opportunity to let their voice be heard. We will recognise members’ contributions by following INVOLVE guidance.

Our 10-month study has 2 parts. In Part 1, we will talk to 50 ancillary staff (privately); care home and Human Resource managers (15-20); residents and relatives (8-10). We will examine care home documents: inspectors’ reports, staff handbooks and job descriptions, to develop a comprehensive picture of the situation. Drawing upon our networks, we will talk to people in different types of care homes and with different personal characteristics (gender, age, ethnicity, employment status), allowing us to examine whether management practice reflects the variety of ancillary staff.

In Part 2, we will co-produce a good practice model for employing and supporting ancillary or housekeeping staff in care homes relevant to Covid-19. Building on Part 1 interviews, we will develop a document with representatives of this workforce, managers, residents and their families. The model will help support these staff during possible future waves of coronavirus and in recovery of services. The study’s outputs include: a detailed report on the experiences and treatment of ancillary staff during the pandemic from different stakeholder perspectives; and a coproduced ‘good practice’ model for policymakers and for care home providers.

We will publicise our resources for managers responsible for human resources, care home managers, wider care home sector; and produce policy options for national social care policymakers. We previously produced Covid-19 guidance for other parts of the care sector that was much appreciated and aim to do the same from this study.

Project summary:

In response to questions and concerns raised by front-line care home staff during the early months of the COVID-19 pandemic in the UK (February – April 2020), research-based ‘Top Tips’ were co-produced with care home staff to complement emerging COVID-19 policy and practice guidelines. Designed as heuristics or rules of thumb, eight rapid, expert reviews of published, multidisciplinary research evidence were conducted. The reviews aimed to help answer care home staffs’ questions about ‘how’ to support residents, family members and each other at a time of unprecedented pressure and grief and adhere to guidance on self-distancing and isolation. Care home staff reviewed drafts of the Top Tips for relevance and usefulness to their work via representative forums, provider organisations and personal contacts of the team. Their feedback informed the content and design of the Top Tips and suggested they would be a helpful resource for new and inexperienced staff.

Project summary:

The COVID-19, or Coronavirus, pandemic and the lockdown of society from March 2020 were unprecedented. Most day centres closed to regular users.

Because adult day centres are not a regulated service, and tend to be invisible in terms of guidance provided, we have put together Helping adult day centres to ‘unlock lockdown’. This document aims to support manager or voluntary co-ordinators and staff generally, into the ‘new normal’ after the lockdown. There is strong evidence that attending a day centre brings quality of life and so, despite risks, enabling people to have the choice of going to a day centre is something worthwhile.