Research Projects on COVID-19 and Long-Term Care

This page gathers information about completed or ongoing research projects on COVID-19 and long-term care. If you would like to to contribute information about your project, please complete our online submission form.

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A social care based evaluation of COVID-19: Understanding workforce response and effects (The SECURE Study)Ongoing

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Contact: Catherine Robinson

Host institution: University of Manchester

Project team: Catherine Robinson, Alys Young (co-lead), Paul Clarkson, Rebecca McPhillips, Kirsten Windfuhr, Karina Lovell, John Keady, Patricia Cartney, Susan Davies, Claire Hargreaves, Martie Van Tongeren, Penny Bee, Martin Regan, Steven Blezard, Amelia Pearson, Rosie Allen

Funding information:

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.

Outputs:

Project website:

PUBLICATIONS & OTHER OUTPUTS

Barriers and facilitators to reducing COVID-19 transmission in care homes: a qualitative exploration and surveyOngoing

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Contact: Diane Bunn https://www.uea.ac.uk/health-sciences/people/profile/d-bunn

Host institution: University of East Anglia

Project team: Professor Iain Lake, Dr Diane Bunn, Dr Julii Brainard, Dr Kathleen Lane, Dr Charlotte Salter

Funding information: NIHR Health Protection Research Unit in Emergency Preparedness at the University of East Anglia

Project summary:

The aim of this study is to extend our awareness of how care-home staff are coping with infection-control mitigation measures, so that we can identify issues facing care home (CH) workers and managers in delivering the safest possible care to their residents during the COVID-19 crisis and the challenges these may pose. We propose an online survey to provide broad insights, followed by key informant interviews to explore lived experiences in depth. Together, these will provide valuable insights into our understandings of the practicalities and challenges around transmission mitigation measures – the barriers and facilitators to limiting the spread of COVID-19.

To complete the survey, please click on this link.

We would also like to interview some care home staff by telephone or online. Online platforms may be Zoom, Microsoft Teams or WhatsApp, but others may be available. The choice will depend on what you prefer and whether the researcher has access to the same technology. If you are interested in this part please contact Dr Julii Brainard (j.brainard@uea.ac.uk) or Dr Diane Bunn (d.bunn@uea.ac.uk) at the University of East Anglia for further information.

Outputs:

When are outputs expected: April 2021

Other relevant publications from the team:
Brainard, J., Rushton, S., Winters, T., Hunter, P. R., Rushton, S., Winters, T., & Hunter, P. R. (2020). Introduction to and spread of COVID-19 in care homes in Norfolk, UK. Journal of Public Health. doi: https://doi.org/10.1101/2020.06.17.20133629

Brainard J., Weston D., Leach S. and Hunter P. (2020b) Factors that influence treatment-seeking expectations in response to infectious intestinal disease: Original survey and multinomial regression. Journal of infection and public health 13(4): 502-508.
Brainard, J, Jones, N, Lake, I, Hooper, L & Hunter, P 2020, ‘Community use of facemasks and similar barriers to prevent respiratory illness such as COVID-19: A rapid scoping review’, Eurosurveillance

Smith, E., Aldus, C. F., Brainard, J., Dunham, S., Hunter, P. R., & Steel, N. (2020). Testing for SARS-CoV-2 in care home staff and residents in English care homes: A service evaluation. MedRxiv, (August 6th), 1–15. Retrieved from doi: https://doi.org/10.1101/2020.08.04.20165928

Project website:http://epr.hpru.nihr.ac.uk/

PUBLICATIONS & OTHER OUTPUTS

Care Homes and Coronavirus: Exploring the impact of the COVID-19 pandemic on the emotional wellbeing of care home practitioners (UK)Ongoing

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Contact: Kath Wilkinson https://www.arc-swp.nihr.ac.uk/staff/kath-wilkinson

Host institution: 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

Project team: Kath Wilkinson, Jo Day, Iain Lang, Jo Thompson-Coon, Vicki Goodwin, Kristin Liabo, George Coxon, Geoffrey Cox

Funding information: Alzheimer’s Society and Dunhill Medical Trust

Project summary:

The aim of this research is to understand the impact of the COVID-19 pandemic on people working in care homes in England. We would like to explore and learn about 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 involves 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 is running from November 2020 – July 2021. 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).

Outputs:

summer 2021

Project website:https://www.arc-swp.nihr.ac.uk/research/the-exchange-collaboration

PUBLICATIONS & OTHER OUTPUTS

Care homes, social distancing and behavioural changes – an assessment of the psychosocial impact of Coronavirus on families with relatives in care homes in Scotland.Ongoing

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Contact: George Palattiyil https://www.sps.ed.ac.uk/staff/social_work/george_palattiyil

Host institution: University of Edinburgh (Lead) in partnership with University of Strathclyde,, University of the West of Scotland, Institute for Research & Innovation in Social Services (IRISS) and Centre for Research on Families and Relationship (CRFR)

Project team: Sumeet Jain (The University of Edinburgh), Jo Hockley (The University of Edinburgh), Lynn Jamieson (The University of Edinburgh), Dina Sidhva (The University of the West of Scotland), Debbie Tolson (The University of the West of Scotland), Neil Quinn (University of Strathclyde), Trish Hafford-Letchfield (University of Strathclyde), Rikke Iversholt, Director, Institute for Research & Innovation in Social Services, and Linda McKie (The University of Edinburgh), Sarah Christison, Sarah Noone and Bruce Mason

Funding information: Chief Scientist Office. 6 month project.

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.

Outputs:

Planned outputs:

Report to funders – 23 Nov 2020, launch of findings – mid-December 2020, further dissemination/engagement activities with policy-makers; social services workforce; carers (Dec 2020-March 2021), creation of teaching and learning resources from the work (Dec 2020-March 2021)

Policy briefs:

The Cost of separation: the impact of visiting restrictions on families of care home residents during COVID-19

Summary version:

The cost of separation: the impact of visiting restrictions on families of care home residents during COVID-19 (summary)

Long version:

The cost of separation: the impact of visiting restrictions on families of care home residents during COVID-19

Project website:https://www.creativecovidcare.com/

PUBLICATIONS & OTHER OUTPUTS

Controlling the spread of COVID-19 in care homes: health and social care partnerships LanarkshireOngoing

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Contact: Le Khanh Ngan Nguyen https://pureportal.strath.ac.uk/en/persons/le-khanh-ngan-nguyen/publications/

Host institution: University of Strathclyde

Project team: Strathclyde University: Le Khanh Ngan Nguyen, Dr Itamar Megiddo, Professor Susan Howick, Gillian Hopkins Anderson, Dr Robert Van Der Meer HSCP Lanarkshire: Dennis McLafferty Public Health Medicine - NHS Lanarkshire: Dr. Sahaya Josephine Pravinkumar

Funding information: SRSS - University REA and DHSC

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

Outputs:

Analysis 1: An evaluation of interventions implemented in care homes early on and an evaluation of additional interventions on top of these, including testing of staff and testing of residents – Evaluating intervention strategies in controlling coronavirus disease 2019 (COVID-19) spread in care homes: An agent-based model – PubMed (nih.gov)

Analysis 2: An evaluation of visiting policy in care homes as well as cohorting of staff and residents within care home – paper under review

Analysis 3: Impacts of various vaccination coverages on the spread of Covid-19 and deaths in care homes, report available here.

Project website:https://www.strath.ac.uk/research/subjects/managementscience/healthsystems/controllingthespreadofcovid-19incarehomes/

PUBLICATIONS & OTHER OUTPUTS

Report-3_Care-homes_Vaccination_Strathclyde.pdf (1.9 MB)

Coronavirus and dementia in care homesOngoing

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Contact: Andrea Capstick https://www.bradford.ac.uk/news/archive/2021/researchers-poetic-tribute-to-care-home-staff-as-new-study-calls-for-more-resources.php

Host institution: University of Bradford

Project team: Dr Andrea Capstick (contact person) Dr Ana Barbosa Dr Giorgia Previdoli Mrs Clare Mason

Funding information: University of Bradford Covid-19 Response and Recovery fund (£5820)

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.

Outputs:

The research team and a number of participants have contributed to a regular blog series on various aspects of coronavirus and dementia in care homes which can be found here http://blogs.brad.ac.uk/dementia/category/codec/.

We are currently analysing the data and aim to disseminate the findings by means of at least one conference and one journal article in the coming year.

We are also in the process of putting together a booklet about the study for care homes.

 

Project website:

PUBLICATIONS & OTHER OUTPUTS

Covid and Care Research GroupOngoing

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Contact: Nikita Simpson https://www.lse.ac.uk/anthropology/research/COVID-and-Care-Research-Group

Host institution: London School of Economics and Political Science

Project team: Laura Bear, Deborah James, Nick Long, Fenella Cannell, Rebecca Bowers, Jordan Vieira, Connor Watt, Anishka Gheewala Lohiya, Caroline Bazambanza, Milena Weurth, Alice Pearson, Olivia Vicol, Teodor Zidaru-Barbelescu, Catherine Whittle.

Funding information:

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.

Outputs:

We produce a range of outputs aimed at academic, public and policy-making audiences.

Our main findings report presents key findings from a 6-month ethnographic study on the impact of the Covid-19 pandemic on disadvantaged households and communities across the UK. This research involved in-depth interviews and multiple surveys with people across communities in the UK, with particular focus on a number of case studies of intersecting disadvantage. Crucially, our research has found that government policy can improve adherence to restrictions and reduce the negative impacts of the pandemic on disadvantaged communities by placing central importance on communities, social networks and households to the economy and social life. This would be the most effective way to increase public trust and adherence to Covid-19 measures, because it would recognise the suffering that communities have experienced and would build policy on the basis of what is most important to people – the thriving of their families and communities.

Project website:https://www.lse.ac.uk/anthropology/research/COVID-and-Care-Research-Group

PUBLICATIONS & OTHER OUTPUTS

ARighttoCare_CovidandCare_Final_1211.pdf (3.4 MB)

ExecSummary_2110.pdf (14.0 MB)

COVID-19, closeness, and care: The changing provision of direct care for older people in residential and home care settingsOngoing

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Contact: Eleanor Johnson

Host institution: University of Bristol

Project team: Eleanor Johnson, Alisa Cameron

Funding information:

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.

Outputs:

Project website:

PUBLICATIONS & OTHER OUTPUTS

Development and evaluation of a training package to support the remote assessment and management of people with movement impairment and disability (UK)Ongoing

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Contact: Jennifer Freeman

Host institution: University of Plymouth

Project team: Jennifer Freeman

Funding information: National Institute for Health Research (NIHR), UK Research and Innovation (UKRI)

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.

Outputs:

Project website:https://www.plymouth.ac.uk/research/centre-for-health-technology/remote-assessment-and-management-of-people-with-movement-impairment-and-disability

PUBLICATIONS & OTHER OUTPUTS

Employing Personal Assistants during the Covid-19 pandemic: lessons for social care practiceOngoing

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Contact: Kritika Samsi https://www.kcl.ac.uk/people/kritika-samsi

Host institution: NIHR Policy Research Unit on Health and Social Care Workforce, The Policy Institute, King’s College London, https://www.kcl.ac.uk/scwru/index

Project team: Kritika Samsi, Jill Manthorpe, John Woolham and Monica Leverton

Funding information: NIHR School for Social Care Research

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.

 

 

 

Outputs:

Outputs expected in 2022

Project website:https://www.kcl.ac.uk/research/employing-personal-assistants-during-covid-19

PUBLICATIONS & OTHER OUTPUTS

Establishing the impact of COVID-19 on the health outcomes of domiciliary care workers in Wales using routine data: The OSCAR studyOngoing

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Contact: Prof Mike Robling https://www.cardiff.ac.uk/centre-for-trials-research/research/studies-and-trials/view/oscar

Host institution: Centre for Trials Research, Cardiff University

Project team: Mike Robling Rebecca Cannings-John Lucy Brookes-Howell Fiona Lugg-Widger Hayley Prout Hywel Jones Ashley Abari Ann John Kerenza Hood Daniel Thomas

Funding information: This research is funded by the?Economic & Social Research Council?(ESRC), as part of?UK Research & Innovation’s rapid response to Covid-19.”

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.

Outputs:

Within 12 months:

  • Generate rapid evidence on short-term outcomes;
  • Short-term report recommendations (briefing sessions to UK policy leads, high-level infographic driven professional and public-facing summaries via digital and social media platforms using evidence-based approaches for developing public health messages (eg GRAPHIC).
  • Publish protocol paper, short-term results (high impact, open access journals).

Within 18 months and beyond:

  • Generate evidence on long-term outcomes, generalisability assessment (to all UK nations), further recommendations to policy and practice;
  • Publish final results;
  • Foundations laid for longer-term research including exploration of UK wide data (e.g. NHS Digital) to benchmark future trends and plan policies.

Project website:https://osf.io/u3zfj/

PUBLICATIONS & OTHER OUTPUTS

Evidence-based supported digital intervention for improving wellbeing and health of people living in care homes WHELD during COVID-19 (UK)Ongoing

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Contact: Clive Ballard

Host institution: University of Exeter and King’s College London

Project team: Clive Ballard

Funding information: National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) COV0094)

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 will now be adapted to the COVID-19 context; an “implementation ready” programme will then be rolled out for care homes nation-wide.

Outputs:

Project website:https://www.nihr.ac.uk/news/new-research-to-personalise-care-for-people-with-dementia-in-care-homes-during-covid-19-pandemic/25812

PUBLICATIONS & OTHER OUTPUTS

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 (UCAIRE)Ongoing

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Contact: Kathleen Lane https://www.uea.ac.uk/about/school-of-health-sciences/research/projects/ucaire-infection-risk-in-care-homes-during-covid-19

Host institution: University of East Anglia

Project team: Dr Kathleen Lane (PI), Dr Julii Brainard, Dr Diane Bunn, Ms Julie Houghton, Dr Anne Killett, Ms Suzanne Mumford, Professor Sarah O'Brien

Funding information: National Institute for Health Research School of Social Care Research (NIHR SSCR)

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.

 

Outputs:

Presentation at care-home forums

Accessible “key points” document aimed at care-home staff

Shared learning events (e.g., with our care-home and care organisations collaborators; with organisations supporting residents and families)

Conference presentation

Open Access journal article

Publication in established care-home newsletters and bulletins

Project website:https://www.uea.ac.uk/about/school-of-health-sciences/research/projects/ucaire-infection-risk-in-care-homes-during-covid-19

PUBLICATIONS & OTHER OUTPUTS

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 (UCAIRE)Ongoing

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Contact: Kathleen Lane

Host institution: University of East Anglia

Project team: Kathleen Lane, Julii Brainard, Diane Bunn, Julie Houghton, Anne Killett, Suzanne Mumford, Sarah O'Brien.

Funding information: This project is funded by National Institute for Health Research (NIHR).

Project summary:

Introduction

Care homes for older people worry about outbreaks of highly infectious diseases like norovirus. They spread swiftly and cause illness and death. Safety measures help stop infections spreading. But these measures have been under strain from SARS-CoV-2, the virus that causes COVID-19. It is highly infectious. In early stages, symptoms often cannot be seen.

Usual safety measures have not always controlled the spread of this virus; care homes added more measures. These included restricting visitors and changing how care is given. How residents, families and staff have coped with measures to prevent the virus spreading and if these met their needs is not known.

Objectives

This study aims to explore the lived experiences of how residents, staff and families coped with preventing spread and transmission of the SARS-CoV-2 virus 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.

Methods

This study involves a mixed-methods approach and includes:

  1. An online survey of care-home staff, using online technology, to identify broad concepts and specific issues or concerns associated with transmission and spread to and within care homes
  2. Semi-structured interviews with care-home staff, residents and families to understand the lived experience of coping with preventing infection-transmission and risk during the pandemic.

The findings from the quantitative and qualitative arms of the study will be integrated to gain comprehensive understandings from which results and overall guidelines can be developed.

Outputs:

Project website:

PUBLICATIONS & OTHER OUTPUTS

Financial impact of COVID-19 on the UK care home sector - implications for businesses and the workforceOngoing

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Contact: Professor Marianna Fotaki https://www.wbs.ac.uk/about/person/marianna-fotaki/

Host institution: Warwick Business School

Project team: Professor Marianna Fotaki (principal investigator) Dr Amy Horton (co-investigator, UCL) Dr Derya Ozdemir-Kaya (research fellow) Dr Aaron Gain (research fellow)

Funding information: UKRI ESRC https://gtr.ukri.org/projects?ref=ES%2FV015338%2F1

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.

Outputs:

Reports analysing:

  • Business risk across UK care homes
  • Experiences of staff at care home level and senior management in responding to any financial pressures, and how they have been affected
  • Recommendations for employers, regulators and policymakers

Project website:http://www.ficch.org.uk

PUBLICATIONS & OTHER OUTPUTS

Health and social care workers’ quality of working life and coping while working during the Covid-19 pandemic: A three phase studyOngoing

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Contact: Paula McFadden https://www.ulster.ac.uk/staff/p-mcfadden

Host institution: School of Applied Social and Policy Sciences, Ulster University, Northern Ireland

Project team: Paula McFadden (Ulster University), Patricia Gillen (Ulster University), John Mallet (Ulster University), Heike Schroder (Queen’s University Belfast), John Moriarty (Queen’s University Belfast), Jill Manthorpe (King’s College London), Jermaine Ravalier (Bath Spa University), Denise Currie (Queen’s University Belfast), Jana Ross (Ulster University), Patricia Nicholl (Ulster University) and Mr Daniel McFadden (Ulster University).

Funding information: This research is funded by the Public Health Agency HSC R&D Division in Northern Ireland and supported by the National Institute for Health Research (NIHR) Policy Research Programme, through the Policy Research Unit in Health and Social Care Workforce, PR-PRU-1217-21202.

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 three time points: May – July 2020, November 2020 – January 2021, and May – July 2021. 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 and their managers/regulators.

Outputs:

Phase 1 findings were published in October 2020, phase 2 findings in March 2021 and phase 3 findings are expected in September-October 2021

 

Report on phase 1: Health and social care workers’ quality of working life and coping while working during the COVID-19 pandemic 7th May – 3rd July 2020: findings from a UK Survey

Click to access 2749ea_62b10d98a3e84bb79f7d6ee71d226766.pdf

Journal article:

McFadden, P.; Ross, J.; Moriarty, J.; Mallett, J.; Schroder, H.; Ravalier, J.; Manthorpe, J.; Currie, D.; Harron, J.; Gillen, P. The Role of Coping in the Wellbeing and Work-Related Quality of Life of UK Health and Social Care Workers during COVID-19. Int. J. Environ. Res. Public Health 2021, 18, 815. https://doi.org/10.3390/ijerph18020815

 

Report on Phase 2: Health and social care workers’ quality of working life and coping while working during the COVID19 pandemic: Findings from a UK Survey Phase 2: 17th November 2020 – 1st February 2021

Click to access 2749ea_80b032cb75ae425991bd2b55a25cbb0b.pdf

Project website:https://www.hscworkforcestudy.co.uk/

PUBLICATIONS & OTHER OUTPUTS

Health-and-Social-Care-workers-quality-of-working-life-and-coping-during-covid-pandemic.pdf (1.2 MB)

How has COVID 19 affected the quality of life, wellbeing, and care of people diagnosed with dementia and their family carers? A nested Time for Dementia sub studyOngoing

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Contact: Stephanie Daley https://www.bsms.ac.uk/about/contact-us/staff/dr-stephanie-daley.aspx

Host institution: Centre for Dementia Studies, Brighton and Susex Medical School

Project team: Dr Stephanie Daley, Dr Nicolas Farina, Dr Laura Hughes, Dr Sam Robertson, Lauren Wonnacott, Dr Naji Tabet, Professor Sube Banerjee

Funding information: NIHR ARC KSS £30,000 SPFT/BSMS £30,000

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)

Outputs:

January 2021

Project website:https://www.bsms.ac.uk/research/neuroscience/cds/time-for-dementia/time-for-dementia.aspx

PUBLICATIONS & OTHER OUTPUTS

HS&DR Project: NIHR 132541 Protecting older people living in care homes from COVID-19: challenges and solutions to implementing social distancing and isolation.Ongoing

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Contact: Joanne Fitzpatrick https://www.kcl.ac.uk/news/nihr-funds-new-study-into-protecting-older-people-in-care-homes-from-covid-19

Host institution: King's College London

Project team: Dr Joanne Fitzpatrick (King’s College London), Professor Ruth Harris (King’s College London), Professor Dame Anne Marie Rafferty (King’s College London), Dr Ivanka Ezhova (King’s College London), Professor Shereen Hussein (London School of Hygiene and Tropical Medicine), Sinead Palmer (PSSRU, University of Kent), Sally Brearley, Dr Richard Adams (Sears Healthcare), Lindsay Rees (Encore Care Homes)

Funding information: This project is funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research Programme (Project reference NIHR132541). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

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.

Outputs:

Throughout and on completion of the project we will share the findings of our research in different ways and with different audiences. The toolkit of resources will share which interventions and strategies for social distancing and isolation for residents work well and which do not. These resources will support decision making about health and care delivery in care homes and help build resilience. Content will be presented in different ways to maximise accessibility and impact and will include a film to narrate the stories of older people, their families/friends and care home staff.

Project website:

PUBLICATIONS & OTHER OUTPUTS

Identifying approaches, barriers and facilitators to visiting in care homes during COVID-19Ongoing

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Contact: Prof Claire Surr

Host institution: Leeds Beckett University

Project team: Prof Claire Surr, Prof Anne-marie Bagnall, Dr Sarah Smith, Dr Rachael Kelley, Dr Alys Griffiths, Dr Liz Jones, Rebecca Platt, Olivia Robinson, Jo Crossland, Dr Graham Stokes, Caroline Baker, Dr Reena Devi, Dr Sahdia Parveen

Funding information: Internally funded by Leeds Beckett University

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

Outputs:

Rapid review publication including taxonomy of relative/friends visiting, report/publications on the survey and interview findings and recommendations around the setting conditions and supports needed to enable care homes to adopt the least restrictive approaches to visiting by relatives/friends/supporters of people with dementia. We will produce lay summaries and visual (e.g. infographic) representations of our findings to ensure they are accessible to care home staff and relatives/friends of care home residents.

Project website:https://padlet.com/CentreForDementiaResearch/xptuxjoyvvbkqevq

PUBLICATIONS & OTHER OUTPUTS

Impact of COVID-19 pandemic on care home pathways, outcomes and safety of careOngoing

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Contact: Jo Knight https://www.lancaster.ac.uk/people-profiles/joanne-knight

Host institution: This project led by researchers at Lancaster University in the Medical School and Data Science Institute.

Project team: Suzanne Mason, Camila Caiado, Nancy Preston, Barbara Hanratty, James Limb, Ian Dove, Elizabeth Teale, Graham King, Alex Garner, Zoe Cockshott, Rachel Stocker, Sian Russell

Funding information: Funded by the Medical Research Council as part of the UKRI Rapid Response Initiative and is part of a broader programme investigating the effectiveness of the NHS Health Call Digital Care Home app, funded by HDRUK.

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 website:

PUBLICATIONS & OTHER OUTPUTS

LESS COVID-19: Learning by Experience and Supporting the Care Home Sector during the COVID-19 pandemic: Key lessons learnt, so far, by frontline care home and NHS staff (UK)Ongoing

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Contact: Karen Spilsbury https://medicinehealth.leeds.ac.uk/healthcare/staff/785/professor-karen-spilsbury

Host institution: School of Healthcare, Faculty of Medicine and Health, University of Leeds, Leeds UK working in partnership with the National Care Forum

Project team: Karen Spilsbury,1,2,3 Reena Devi,1,2 Amrit Daffu-O’Reilly,1 Alys Griffiths,2,4 Kirsty Haunch,1,2 Liz Jones,5 and Julienne Meyer5,6 Affiliations: 1University of Leeds, 2NICHE-Leeds, 3Applied Research Collaboration for Yorkshire and Humber (YHARC), 4Leeds Beckett University, 5National Care Forum, 6City, University of London

Funding information: Funding: This work was funded by the Dunhill Medical Trust (project reference 2020CD1). The views expressed are those of the author(s) and not necessarily those of the funder.

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.

Outputs:

Outputs: We have presented the findings to colleagues working in the care home sector. The report can be accessed https://niche.leeds.ac.uk/wp-content/uploads/sites/56/2020/10/LESS-COVID-19-SPILSBURY-ET-AL-2020.pdf or https://www.nationalcareforum.org.uk/wp-content/uploads/2020/10/LESS-COVID-19-v2.pdf.

Our intention is for the report to remain ‘active’ with opportunities to continue learning lessons and sharing strategies for the benefit of those living and working in care homes. We invite care providers to comment on resonance, relevance and gaps via an online survey (https://leeds.onlinesurveys.ac.uk/less-covid-report-feedback). We will review the report in January 2021. Beyond the funded work, we plan to co-create, with the care home sector, a range of resources to share the overall lessons learnt with frontline staff and provider organisations.

Project website:

PUBLICATIONS & OTHER OUTPUTS

Long-term care and COVID-19 - a Scoping reviewOngoing

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Contact: Tine Rostgaard https://www.su.se/english/profiles/tiro0917-1.478940

Host institution: Department of Social work, Stockholm University

Project team: Professor emerita Marta Szebehely Dr. Elin Peterson

Funding information: Swedish research council FORTE

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.

Outputs:

The results of the review as well as the case study will be presented in two academic articles, and in a Swedish report and public event for national and local policy makers and LTC organizations.

Project website:

PUBLICATIONS & OTHER OUTPUTS

Long-term psychological impacts of COVID-19 public health measures on older people and those with dementia in low- and middle-income countriesOngoing

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Contact: Clarissa Giebel

Host institution: University of Liverpool

Project team: Clarissa Giebel, Mark Gabbay, Maria Isabel Zuluaga, Isaac Ddumba, Bwire Ivan, Gabriel Saldarriaga, Suresh Kumar, Jacqueline Cannon, Julie Dickinson

Funding information:

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.

Outputs:

Papers exploring the long-term psychological impacts of COVID-19 public health measures on older adults, and how these effects vary across different LMICs.

Lay summaries

Blogs

Short videos

Project website:

PUBLICATIONS & OTHER OUTPUTS

Mc-COVID19 - Coordination mechanisms in Coronavirus management between different levels of government and public policy sectors in 15 European countriesOngoing

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Contact: Francisco Javier Moreno Fuentes https://www.mc-covid.csic.es/english-version

Host institution: Institute of Public Goods and Policies, Spanish National Research Council (CSIC)

Project team: Project Coordinators o Eloísa del Pino o Francisco Javier Moreno Fuentes Research Team (alphabetical order) o Gibrán Cruz-Martínez o Jorge Hernández-Moreno o Luis Moreno o Manuel Pereira-Puga o Roberta Perna International team o Austria - Monika Riedel, Institute for Advanced Studies o Belgium - Jozef Pacolet, Research Institute for Work and Society, KU Leuven o Denmark - Tine Rostgaard, Roskilde University o Finland - Tyyne Ylinen, Vera Ylinen, Laura Kalliomaa-Puha, and Satu Ylinen. Tampere University & Social Insurance Institution of Finland - Kela o France - Arnaud Campéon, Blance Le Bihan, Michel Legros, and Claude Martin. EHESP French School of Public Health and CNRS. o Germany - Caspar Lückenbach, Eduard Klukas, Phillip Florian Schmidt and Thomas Gerlinger. Bielefeld University o Greece - Costis Prouskas, and Michael Goudoumas. Aktios SA o Ireland - Sara Burke, and Eimir Hurley. Centre for Health Policy and Management, Trinity College Dublin o Italy - Costanzo Ranci, and Marco Arlotti. Politecnico di Milano o Luxembourg - Robert Urbé. o Netherlands - María Bruquetas-Callejo, and Anita Böcker. Radboud University Nijmegen o Portugal - Luis Capucha, Nuno Nunes, and Alexandre Daniel Calado. Center for Research and Studies in Sociology (CIES-IUL) o Sweden - Lennarth Johansson (1) and Pär Schön (2). (1) Jönköping University, and Stockholm Gerontology Research Center. (2) Aging Research Center, Stockholm University, Karolinska Institutet o United Kingdom - England - Caroline Glendinning. University of York (emeritus).

Funding information: The Mc-COVID19 project has received funding from the Spanish National Research Council (CSIC) within the framework of the CSIC-COVID-19 program.

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.

Outputs:

Project website:https://www.mc-covid.csic.es/english-version

PUBLICATIONS & OTHER OUTPUTS

Monitoring the impact of COVID-19 among care home residents in EnglandOngoing

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Contact: Marcello Morciano https://www.research.manchester.ac.uk/portal/marcello.morciano.html

Host institution: The University of Manchester, UK

Project team: Jonathan Stokes, Alex J Turner, Sharvari Patwardhan and colleagues at the University of Manchester.

Funding information: Part-funded by the National Institute for Health Research (NIHR) Applied Research Collaboration for Greater Manchester; the NIHR School for Primary Care Research (SPCR-2014-10043, grant ref no. 474); the NIHR Policy Research Unit in Health and Social Care Systems and Commissioning (PRUComm, PR-PRU-1217-20801).

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.

Outputs:

first paper available on medrxiv: https://www.medrxiv.org/content/10.1101/2020.11.11.20229815v1.full.pdf, (media coverage: the Daily Mail : https://www.telegraph.co.uk/news/2020/11/17/care-home-deaths-first-covid-wave-may-10000-higher-reported/ ; Daily Express P5; Daily mail Page 1 and 2 and https://www.dailymail.co.uk/news/article-8955633/Care-home-bosses-urge-ministers-protect-nursing-centres-sued-just-like-NHS.html?ns_mchannel=rss&ns_campaign=1490&ito=1490; Daily Telegraph P9, https://www.msn.com/en-gb/news/newsmanchester/rapid-testing-for-care-home-visitors-by-christmas-as-excess-death-research-suggests-up-to-10000-more-residents-may-have-died/ar-BB1b3uB8. Evidence provided to the Social Care Working Group (19 Jun 2020). Cited in https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/897497/S0343_Care_Homes_Analysis.pdf

Project website:https://www.research.manchester.ac.uk/portal/en/researchers/marcello-morciano(f4952779-6cc5-496d-a181-351ff636e1be)/activities.html https://www.arc-gm.nihr.ac.uk/projects/care-home-marketplace-GM

PUBLICATIONS & OTHER OUTPUTS

Rapid evaluation of the care home response to the need for palliative and end-of-life care during the COVID-19 pandemic: integration, communication and workforce resilience (CovPall_CareHome)Ongoing

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Contact: Katherine Sleeman https://www.kcl.ac.uk/cicelysaunders/about/people/academic/sleemank

Host institution: King's College London

Project team: Professor Katherine Sleeman Dr Catherine Evans Miss Margaret Ogden Professor Irene Higginson Professor Claire Goodman Dr Clare Ellis-Smith Professor Stephen Barclay

Funding information: National Institute for Health Research (NIHR)

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. 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.

Outputs:

The research is designed for short- and medium-term policy impact, through care home, Patient and Public Involvement (PPI), and policy collaboration. An interim analysis will inform short-term policy during winter 2020/2021. Reports will be accompanied by PPI summaries, evidence summaries and guidance for front-line staff. Academic papers will be published as preprints to ensure timely dissemination.

Project website:https://www.kcl.ac.uk/cicelysaunders/research/evaluating/covpall-study

PUBLICATIONS & OTHER OUTPUTS

Rapid evaluation of the COVID-19 pandemic response in palliative and end of life care: national delivery, workforce and symptom management (CovPall) (UK)Ongoing

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Contact: Irene Higginson

Host institution: King’s College London

Project team: Irene Higginson

Funding information: NIHR ARC South London (UK), MRC (UK), Cicely Saunders International (UK)

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.

Outputs:

Project website:https://www.kcl.ac.uk/cicelysaunders/research/evaluating/covpall-study

PUBLICATIONS & OTHER OUTPUTS

Retention and Sustainability of Social Care Workforce (RESSCW, UK)Ongoing

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Contact: Florin Vadean and Shereen Hussein https://www.pssru.ac.uk

Host institution: Personal Social Services Research Unit (PSSRU), University of Kent

Project team: Florin Vadean (PSSRU, University of Kent), Shereen Hussein (PSSRU, University of Kent), Stephen Allan (PSSRU, University of Kent), Katerina Gousia (PSSRU, University of Kent), Agnes Turnpenny (PSSRU, University of Kent), Grace Collins (PSSRU, University of Kent), Ann-Marie Towers (CHSS, University of Kent), Eirini Saloniki (CHSS, University of Kent), Alex Bryson (Department of Social Science, UCL), J ohn Forth (Cass Business School, City University of London)

Funding information: Funding information: Health Foundation Efficiency Research Programme

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.

Outputs:

When are Ongoing

Project website:www.pssru.ac.uk/resscw/frontpage

PUBLICATIONS & OTHER OUTPUTS

Social Care COVID Recovery & Resilience: Learning lessons from international responses to the COVID-19 pandemic in long-term care systemsOngoing

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Contact: Adelina Comas-Herrera https://www.lse.ac.uk/cpec

Host institution: Care Policy and Evaluation Centre, Department of Health Policy, London School of Economics and Political Science and the Nuffield Trust

Project team: Adelina Comas-Herrera (PI), Natasha Curry (co-lead), Erica Breuer, William Byrd, Margaret Dangoor, Nigel Edwards, Stefanie Ettelt, Jose-Luis Fernandez, Nina Hemmings, Martin Knapp, Margrieta Langins, Shoshana Lauter, Klara Lorenz-Dant, Camille Oung, Maximilien Salcher-Konrad, Sian Smith and Jessica J. Yu, in collaboration with the National Care Forum. The project is supported by Margaret Dangoor, Trevor Palmer a Public Involvement and Engagement Group

Funding information: National Institute for Health Research (NIHR), Policy Research Programme (PRP) - Recovery, Renewal, Reset: Research to inform policy responses to COVID-19 in the health and social care systems. Grant number: NIHR202333

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;

  1. 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;

  1. 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.

  1. 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 will be supported by a Public Involvement and Engagement Group and an advisory group of experienced academics and representatives of key stakeholder organisations. These groups will act as critical friends, will help ensure 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 aims to complete by Summer 2022.

 

Outputs:

 

Planned project outputs

Given the constantly-evolving situation and the importance of timely learning, we will seek to ensure relevant emerging findings are available to national and local decision-makers as quickly as possible. Throughout the lifetime of the project, we will seek to publish a range of outputs such as:

  • A “living” international report providing an overview of how Long-Term Care systems around the world have been affected by the COVID-19 pandemic, how they have responded and what lessons have been learnt, as well as brief descriptions of long-term care systems;
  • Research evidence summaries/blogs, highlighting policy-relevant findings (see below);
  • Timely briefings for key stakeholders;
  • Journal articles.

The first substantial output will be published in early Summer 2021, which will reflect on the English experience during the first and subsequent waves of infection and what lessons could be learnt. A final output will bring together what we have learnt across the project and summarise the main lessons and recommendations for the recovery from, and future prevention and management of, Covid-19 in the English social care sector, as well as lessons emerging to inform the longer-term future of social care.

 

Project outputs so far:

Webinar presentation:

Video and slides of the webinar on: The social care sector in England and Covid-19, mapping the way towards recovery and increased resilience, 24th May

Evidence summaries:

COVID-19 outbreaks during or shortly after vaccination of care home residents: summary of three studies from the US and Germany

Evidence summary: emerging evidence on the protective effect of vaccines from COVID-19 infections among care home populations

Article summary: Vaccine effectiveness after 1st and 2nd dose of the BNT162b2 mRNA (Pfizer/BioNTech) Covid-19 vaccine in long-term care facility residents and healthcare workers – a Danish cohort study (pre-print)

Evidence summary: The use of Information and Communications Technology and Data Sharing in Long-Term Care settings

Project website:

PUBLICATIONS & OTHER OUTPUTS

Supporting Care Home Residents Living with Dementia and Hearing Loss and the Impacts of COVID-19 on Current PracticeOngoing

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Contact: Hannah Cross

Host institution: University of Manchester

Project team: Hannah Cross, Dr Rebecca Millman, Prof Chris Armitage, Dr Piers Dawes, Prof Iracema Leroi

Funding information: Alzheimer's Society

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.

Outputs:

Mid 2021

Project website:

PUBLICATIONS & OTHER OUTPUTS

The COVID-19 outbreak in the nursing home sector – does ownership matter?Ongoing

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Contact: Florien Kruse https://betaalbaarheidvanzorg.nl/en/about

Host institution: Radboud Medical Centre, IQ healthcare

Project team: Amy Hsu (Canada) Marcello Marciano (England) Stephen Allan (England) Elizabeth Lemmon (Scotland) David Bell (Scotland) Maria Aurora Fenech (Malta) Sara Charlesworth (Australia) Patrick Jeurissen (The Netherlands) Adelina Comas-Herrera

Funding information: Not funded

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.

Outputs:

January/February 2021

Project website:

PUBLICATIONS & OTHER OUTPUTS

The effect of COVID-19 related care home closures on family members, residents, and staff (UK)Ongoing

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Contact: Clarissa Giebel https://www.liverpool.ac.uk/population-health-sciences/staff/clarissa-giebel/

Host institution: University of Liverpool

Project team: Clarissa Giebel

Funding information: NIHR ARC NWC and The Geoffrey and Pauline Martin Trust

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.

Outputs:

Early 2021

Project website:

PUBLICATIONS & OTHER OUTPUTS

The experience of family carers and keeping in regular contact with loved ones who permanently live in a care home during the COVID-19 Pandemic: A UK perspectiveOngoing

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Contact: Kathryn Hinsliff-Smith https://www.dmu.ac.uk/research/centres-institutes/ihhpsc/index.aspx

Host institution: De Montfort University, Leicester, UK.

Project team: Dr Kathryn Hinsliff-Smith, Dr Sarah Griffiths, Professor Kay de Vries, Professor Jayne Brown

Funding information: no external funding

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

Outputs:

When outputs are expected: early 2021

Project website:https://www.dmu.ac.uk/research/centres-institutes/ihhpsc/project-information.aspx

PUBLICATIONS & OTHER OUTPUTS

The impact of Care Act Easements under the Coronavirus Act 2020 on co-resident older carers of partners with dementiaOngoing

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Contact: Professor Debora Price

Host institution: The University of Manchester

Project team: Professor Debora Price Dr Philip Drake Neil Allen Dr Jayne Astbury

Funding information: National Institute for Health Research

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.

Outputs:

We will provide internal briefings to the Department of Health and Social Care and partner organisations, interim reports for legislative reviews, briefing notes and lay summaries for stakeholders, and blogs/videos for public access on the project webpage, with two substantial online dissemination events, and three peer-reviewed journal articles.

Project website:

PUBLICATIONS & OTHER OUTPUTS

The impact of Covid-19 confinement and isolation measures on people with dementia: a rapid reviewOngoing

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Contact: Dr Aida Suarez Gonzalez https://iris.ucl.ac.uk/iris/browse/profile?upi=ASUAR45

Host institution: University College London

Project team: Jayeeta Rajagopalan, Dr Suvarna Alladi

Funding information:

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.

Outputs:

This rapid review is expected to be completed by January 2020 and submitted to https://www.medrxiv.org/ before final submission to a peer-review journal

Project website:

PUBLICATIONS & OTHER OUTPUTS

The impact of the COVID-19 pandemic on people with learning disabilities and factors associated with better outcomesOngoing

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Contact: Chris Hatton (co-PI) Richard Hastings (co-PI) https://www.mmu.ac.uk/hpsc/our-staff/browse/department-of-social-care-and-social-work/profile/index.php?id=4867 and https://warwick.ac.uk/fac/soc/cedar/staff/rhastingsprofile/

Host institution: Department of Social Care and Social Work, Manchester Metropolitan University (Chris Hatton) Centre for Educational Development, Appraisal and Research, University of Warwick (Richard Hastings)

Project team: PIs: Prof Richard Hastings (University of Warwick) Prof Chris Hatton (Manchester Metropolitan University) Co-Is: Prof David Abbott (University of Bristol) Dr Stephen Beyer (Cardiff University) Dr Jill Bradshaw (University of Kent) Dr Nick Gore (University of Kent) Prof Pauline Heslop (University of Bristol) Prof Andrew Jahoda (University of Glasgow) Anna Marriott (National Development Team for Inclusion) Dr Katrina Scior (UCL) Dr Laurence Taggart (University of Ulster) Dr Stuart Todd (University of South Wales) Researchers: Dr Sue Caton (Manchester Metropolitan University Dr Samantha Flynn (University of Warwick) Dr Tom Bailey (University of Warwick) Dr Amanda Gilooly (University of Glasgow) Dr Roseann Maguire (University of Glasgow) Dr Edward Oloidi (University of South Wales) Dr Peter Mulhall (University of Ulster) Partner organisations: Learning Disability Wales All Wales Forum of Parents and Carers of People with Learning Disabilities Scottish Commission for Learning Disability Promoting A More Inclusive Society (PAMIS) Positive Futures Mencap Northern Ireland Learning Disability England PMLD Link

Funding information: UKRI-COVID-19 research programme

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.

Outputs:

Short reports, blogposts and other summaries of urgent issues and interim findings will be produced throughout the blogpost, with the first set of findings due in February 2021. Peer-reviewed publications will be submitted starting in March 2021.

Project website:https://warwick.ac.uk/fac/soc/cedar/covid19-learningdisability

PUBLICATIONS & OTHER OUTPUTS

The impacts of COVID-19 public health measures on people living with dementia in the community and unpaid carers – An international 5-country study (Australia, India, Italy, Poland and UK)Ongoing

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Contact: Clarissa Giebel https://www.liverpool.ac.uk/population-health-sciences/staff/clarissa-giebel/

Host institution: University of Liverpool

Project team: Clarissa Giebel

Funding information: NIHR ARC NWC

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.

Outputs:

Early Spring 2021

Project website:

PUBLICATIONS & OTHER OUTPUTS

The operation of easements under the Coronavirus Act 2020 to England’s Care Act 2014Ongoing

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Contact: Mary Baginsky https://www.kcl.ac.uk/

Host institution: King's College London

Project team: Mary Baginsky, Jill Manthorpe, Joan Rapaport, Emily Thomas.

Funding information: This project is funded by the National Institute for Health Research (NIHR).

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

Outputs:

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

PUBLICATIONS & OTHER OUTPUTS

The other keyworkers in care homes: implications of including domestic staff in social care workforce strategies and practices relating to Covid-19 recoveryOngoing

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Contact: Kritika Samsi https://www.kcl.ac.uk/people/kritika-samsi

Host institution: King's College London

Project team: Kritika Samsi Olivia Luijnenberg Caroline Norrie Stephen Martineau Ian Kessler Jill Manthorpe

Funding information: NIHR Policy Research Programme Recovery, Renewal, Reset: Research to inform policy responses to COVID-19

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.

Outputs:

Expected October 2021.

Project website:https://www.kcl.ac.uk/research/the-other-keyworkers

PUBLICATIONS & OTHER OUTPUTS

The VIVALDI study: epidemiology of SARS-CoV2 infection amongst care home residents and staff in EnglandOngoing

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Contact: Laura Shallcross

Host institution: University College London

Project team: Maria Krutikov, Tom Palmer, Gokhan Tut, Chris Fuller, Madhumita Shrotri, Haydn Williams, Daniel Davies, Aidan Irwin-Singer, James Robson, Andrew Hayward, Paul Moss, Andrew Copas, Laura Shallcross, Rebecca Giddings, Borscha Azmi, Rachel Bruton

Funding information: Department of Health and Social Care

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

Outputs:

Shroti M, et al (2021). Vaccine effectiveness of the first dose of ChAdOx1 nCoV-19 and BNT162b2 against SARS-CoV-2 infection in residents of Long-Term Care Facilities (VIVALDI study) doi: https://doi.org/10.1101/2021.03.26.21254391 medRxiv preprint

Krutikov, M et al. (2021). Incidence of SARS-CoV-2 infection according to baseline antibody status in staff and residents of 100 long-term care facilities (VIVALDI): a prospective cohort study. Lancet Healthy Longev 2021; 2: e362–70 https://www.thelancet.com/journals/lanhl/article/PIIS2666-7568(21)00093-3/fulltext

Project website:

PUBLICATIONS & OTHER OUTPUTS

UK Pandemic Ethics Accelerator: rapid evidence, guidance, and critical analysis to inform policyOngoing

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Contact: Cian O'Donovan https://www.neuroethics.ox.ac.uk/ethics-accelerator

Host institution: University of Oxford

Project team: University of Oxford: Professors Dominic Wilkinson and Julian Savulescu; University of Bristol:Professor John Coggon; University of Edinburgh: Dr Sarah Chanand Professor Sarah Cunningham-Burley; University College London: Dr Melanie Smallman and Professor James Wilson and Dr. Cian O'Donovan Nuffield Council on Bioethics: Hugh Whittal

Funding information: UKRI grant number: AH/V013947/1.

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 decisionmaking. 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 website:https://ukpandemicethics.org

PUBLICATIONS & OTHER OUTPUTS

ODonovan-et-al.-2021-Making-older-people-visible-solving-the-denominat.pdf (308.7 KB)

UndersTanding the distinct challenges for Nurses in Care Homes: LeaRnIng from COVID-19 to support resiliencE and mental well-being (THRIVE)Ongoing

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Contact: Dr Diane Bunn

Host institution: University of East Anglia

Project team: Dr Diane Bunn (PI), Dr Linda Birt, Dr Jason Corner, Ms Andrea Deakins, Dr Kathleen Lane, Professor Kristy Sanderson

Funding information: The Burdett Trust for Nursing

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 will be undertaken in two phases:
o 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.
o 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.

Outputs:

Ongoing:
– Include a blog on the ARC, East of England (https://arc-eoe.nihr.ac.uk/)
Early 2022
– Conference presentation
– Open Access journal publication
– Publication in established care-home newsletters and bulletins
– Presentation at local care-home forums

Project website:

PUBLICATIONS & OTHER OUTPUTS

Visit-id: a study of care home visiting arrangements during Covid-19Ongoing

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Contact: Josie Dixon https://www.lse.ac.uk/cpec/people/josie-dixon

Host institution: Care Policy and Evaluation Centre (CPEC), London School of Economics and Political Science (LSE)

Project team: Josie Dixon (CPEC, LSE) Klara Lorenz-Dant (CPEC, LSE) Margaret Dangoor (CPEC, LSE) Kellyn Lee (CPEC, LSE) Sarah Russell (independent researcher/ expert) Daniel Casson (Care England) Martin Knapp (CPEC, LSE)

Funding information: National Institute for Health Research (NIHR), Policy Research Programme (PRP) - Recovery, Renewal, Reset: Research to inform policy responses to COVID-19 in the health and social care systems. Grant number: NIHR202482

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, Kellyn Lee, Margaret Dangoor, in collaboration with Sarah Russell, independent researcher/ expert, and Daniel Casson and his colleagues at Care England.

It is funded by the National Institute for Health Research (NIHR), Policy Research Programme as part of it’s Recovery, Renewal, Reset: Research to inform policy responses to COVID-19 in the health and social care systems funding call. It will run from January 2021 – April 2022 and 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.

The study will examine how care homes in England have developed and implemented their visiting policies during the COVID-19 pandemic, and the factors that shape this. In particular, the study will identify range and diversity across care homes in:

  • the content of visiting policies
  • how visiting policies were developed
  • how Government guidance on care home visiting has been interpreted and implemented
  • how and to what degree scope in Government guidance for policies to take account of individual residents’ needs has been reflected in visiting policies
  • the use of other support (e.g. non-Government guidance, practical tools, professional assistance) to develop and implement policies, and the role of local authority, or other local advice and requirements
  • in what ways the views and perspectives of residents, families and others have been taken into account when developing policies
  • how policies have been communicated to residents, families and others, including what has worked well and less well
  • experiences of implementing visiting policies, including views on the workability of policies; the acceptability of policies to residents, families and staff; and any equity or other impacts

 

Throughout, the researchers will identify the varied opportunities and challenges facing care homes in developing and implementing their policies, and identify aspects that have worked well and less well. Importantly, they will also identify the characteristics and circumstances of care homes, and other contextual factors, that have helped to shape care homes’ different approaches and experiences.

Methods:

Stage 1: 200 care home managers (or a nominated senior member of staff) will complete an online questionnaire with ten questions inviting brief narrative answers (approximately 20-30 minutes to complete). We will also ask respondents to supply us with their written visiting policy, where they have one. Where relevant, questions about developing visiting policies will be directed to care home organisation managers.

Stage 2: In-depth interviews with senior staff in 30-40 care homes/ care home organisations to further explore issues emerging from the survey.

Stage 3: In the final stage of the project we will speak to around 30 family carers of people living in care homes (recruited separately) to learn about their experiences and views of care home visiting policies.

Outputs:

To share our findings, we will produce a range of policy briefings, academic journal papers, blogs and webinars.

Project website:

PUBLICATIONS & OTHER OUTPUTS

What is the evidence for how and what communication methods are used between family carers, residents and care homes either during an enforced lock down or at usual times of operating? (UK)Ongoing

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Contact: Kathryn Hinsliff-Smith https://www.dmu.ac.uk/research/centres-institutes/ihhpsc/index.aspx

Host institution: De Montfort University, Leicester, UK

Project team: Dr Kathryn Hinsliff-Smith, Dr Sarah Griffiths, Professor Jayne Brown and from The University of Leeds Dr Reena Devi and Dr Alys Griffiths

Funding information: no external funding

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

Outputs:

When are early 2021, pre print 2020

Project website:https://www.dmu.ac.uk/research/centres-institutes/ihhpsc/project-information.aspx

PUBLICATIONS & OTHER OUTPUTS

Caring behind closed doorsComplete

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Contact: Rachael Graham https://www.carersuk.org

Host institution: Carers UK

Project team: Emily Holzhausen, Rachael Graham, Ruby Peacock, John Perryman, Ben Hall and Christine Casely

Funding information: Carers UK

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.

Outputs:

Already available (report 1 was published in April 2020, report 2 published October 2020).
Report 1 – Caring Behind Closed Doors (April 2020) – https://www.carersuk.org/for-professionals/policy/policy-library/caring-behind-closed-doors-report | Report 2 – Caring Behind Closed Doors, Six Months On (October 2020) – https://www.carersuk.org/for-professionals/policy/policy-library/caring-behind-closed-doors-six-months-on

Project website:https://www.carersuk.org/for-professionals/policy/policy-library/caring-behind-closed-doors-six-months-on

PUBLICATIONS & OTHER OUTPUTS

COVID-19 Care Home Sector StudyComplete

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Contact: Fiona Marshall http://arc-em.nihr.ac.uk/research/covid-19-care-home-sectors-study

Host institution: School of Medicine, University of Nottingham

Project team: Dr Fiona Marshall Prof. Adam Gordon

Funding information: NIHR ARC EM

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.

 

Outputs:
Marshall, F., Gordon, A., Gladman, J. et al. Care homes, their communities, and resilience in the face of the COVID-19 pandemic: interim findings from a qualitative study. BMC Geriatr 21, 102 (2021). https://doi.org/10.1186/s12877-021-02053-9

 

Project website:http://arc-em.nihr.ac.uk/research/covid-19-care-home-sectors-study

PUBLICATIONS & OTHER OUTPUTS

Excess mortality for care home residents during the first 23 weeks of the COVID-19 pandemic in England: a national cohort studyComplete

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Contact: Marcello Morciano https://www.research.manchester.ac.uk/portal/marcello.morciano.html

Host institution: The University of Manchester, UK

Project team: Jonathan Stokes, Alex J Turner, Sharvari Patwardhan, Ian Hall, Evangelos Kontopantelis

Funding information: Part-funded by the National Institute for Health Research (NIHR) Applied Research Collaboration for Greater Manchester; the NIHR School for Primary Care Research (SPCR-2014-10043, grant ref no. 474); the NIHR Policy Research Unit in Health and Social Care Systems and Commissioning (PRUComm, PR-PRU-1217-20801); (JS is additionally supported by an MRC Fellowship (MR/T027517/1)). IH is Principal Investigator of the NIHR Policy Research Programme in Operational Research for Emergency Response Analysis (OPERA, PR-R17-0916-21001).

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).

Outputs:

Journal article:

 

Morciano, M., Stokes, J., Kontopantelis, E. et al. Excess mortality for care home residents during the first 23 weeks of the COVID-19 pandemic in England: a national cohort study. BMC Med 19, 71 (2021). https://doi.org/10.1186/s12916-021-01945-2

Project website:https://www.research.manchester.ac.uk/portal/en/researchers/marcello-morciano(f4952779-6cc5-496d-a181-351ff636e1be)/activities.html , https://www.arc-gm.nihr.ac.uk/projects/care-home-marketplace-GM )

PUBLICATIONS & OTHER OUTPUTS

Health inequalities in the care pathways for people living with young- and late-onset dementia in LiverpoolComplete

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Contact: Clarissa Giebel

Host institution: University of Liverpool

Project team: Dr Clarissa Giebel; Dr Frances Darlington-Pollock; Prof Mark Gabbay; Caroline Sutcliffe; Dr Mark A Green; Dr Asan Akpan; James Watson; Julie Dickinson

Funding information: People with dementia need easy access to a number of post-diagnostic support services. This includes accessing support groups, paid carers, hot meals delivered to the home, or going to day care centres. However, these can be difficult to access depending on whether they come from a more disadvantaged or more affluent background. Specifically, little is known about the individual care pathways of what and when people with dementia access both in terms of dementia-specific services and general health care services, such as going to see their doctor or going to the hospital. Therefore, the aim of this study is to explore the experiences of people with young-onset dementia and late-onset dementia living in the community in Liverpool on their care pathways, and whether they are experiencing any health inequalities in accessing health care services.

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.

Outputs:

Giebel C, Sutcliffe C, Darlington-Pollock F, Green MA, Akpan A, Dickinson J, Watson J, Gabbay M. Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic. International Journal of Environmental Research and Public Health. 2021; 18(2):686. https://www.mdpi.com/1660-4601/18/2/686

Project website:

PUBLICATIONS & OTHER OUTPUTS

Identification and analysis of hospital discharges during March to May 2020 from NHS Scotland hospitals into care homesComplete

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Contact: Jenni Burton

Host institution: University of Edinburgh and University of Glasgow

Project team: Professor Bruce Guthrie, University of Edinburgh & Dr Jenni Burton, University of Glasgow

Funding information: Public Health Scotland (https://beta.isdscotland.org/)

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.

 

 

Outputs:

Full report: https://publichealthscotland.scot/media/7313/2021-04-21-discharges-from-nhsscotland-hospitals-to-care-homes-between-1-march-and-31-may-2020.pdf

Academic publication (covering older adult homes only):

Jennifer Kirsty Burton, Megan McMinn, James E Vaughan, Jacques Fleuriot, Bruce Guthrie, Care-home outbreaks of COVID-19 in Scotland March to May 2020: National linked data cohort analysis, Age and Ageing, 2021;, afab099, https://doi.org/10.1093/ageing/afab099

 

Project website:https://beta.isdscotland.org/find-publications-and-data/population-health/covid-19/discharges-from-nhsscotland-hospitals-to-care-homes/

PUBLICATIONS & OTHER OUTPUTS

Non-pharmacological measures implemented in the setting of long-term care facilities to prevent SARS-CoV-2 infections and their consequences: a rapid reviewComplete

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Contact: Jan M Stratil

Host institution: Institute for Medical Information Processing, Biometry and Epidemiology (IBE), Chair of Public Health and Health Services Research, LMU Munich, Munich, Germany

Project team: Jan M Stratil Renke L Biallas Jacob Burns Laura Arnold Karin Geffert Angela M Kunzler Ina Monsef Julia Stadelmaier Katharina Wabnitz Tim Litwin Clemens Kreutz Anna Helen Boger Saskia Lindner Ben Verboom Stephan Voss Ani Movsisyan

Funding information: Federal Ministry of Education and Research of Germany, Germany This rapid review is conducted as part of the project COVID?19 evidence eco-system ("COVID-19 Evidenzökosystem" (CEO-sys)) under a funding scheme issued by the National Research Network of University Medical Centers on COVID-19 (Nationales Forschungsnetzwerk der Universitätsmedizin zu Covid-19) by the Federal Ministry of Education and Research of Germany (Bundesministerium für Bildung und Forschung, BMBF).

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.

Objectives

To assess the effects of non-pharmacological measures implemented in long-term care facilities to prevent or reduce the transmission of SARS-CoV-2 infection among residents, staff, and visitors.

Search methods

Systematic literature review with data base searches in the Cochrane COVID-19 Study Register, WHO COVID-19 Global literature on coronavirus disease, Web of Science, and CINAHL in combination with backward citation searches of existing reviews.

Type of studies

In the review, we included experimental, quasi-experimental, observational and modelling studies that assessed the effects of the measures implemented in long?term care facilities to protect residents and staff against SARS-CoV-2 infection.

Interventions of interest

  1. Entry regulation measures to prevent residents, staff or visitors introducing the virus into the facility.
  2. Contact-regulating and transmission-reducing measures to prevent people passing on the virus within the facility.
  3. Surveillance measures designed to identify an outbreak early.
  4. Outbreak control measures to reduce the consequences of an outbreak.
  5. A combination of these measures

Outcomes of interest

Primary outcomes were infections, hospitalisations and deaths due to COVID-19, contaminations of and outbreaks in long-term care facilities, and adverse health effects.

Data collection and analysis

Two review authors independently screened titles, abstracts and full texts. One review author performed data extractions, risk of bias assessments and quality appraisals, and at least one other author checked their accuracy. Risk of bias and quality assessments were conducted using the ROBINS-I tool for cohort and interrupted?time?series studies, the Joanna Briggs Institute (JBI) checklist for case-control studies, and a bespoke tool for modelling studies. We synthesised findings narratively, focusing on the direction of effect. One review author assessed certainty of evidence with GRADE, with the author team critically discussing the ratings.

 

Outputs:

Summary

The protocol of the Cochrane Review was published in May 2021. A first version of the review was published in September 2021.
In end of September, the work on an update of the review began, with an update expected by the end of the year.

 

Main results

We included 11 observational studies and 11 modelling studies in the analysis. All studies were conducted in high-income countries.

Most studies compared outcomes in long-term care facilities that implemented the measures with predicted or observed control scenarios without the measure (but often with baseline infection control measures also in place). Several modelling studies assessed additional comparator scenarios, such as comparing higher with lower rates of testing.

There were serious concerns regarding risk of bias in almost all observational studies and major or critical concerns regarding the quality of many modelling studies. Most observational studies did not adequately control for confounding. Many modelling studies used inappropriate assumptions about the structure and input parameters of the models, and failed to adequately assess uncertainty.

Overall, we identified five intervention domains, each including a number of specific measures.

Entry regulation measures (4 observational studies; 4 modelling studies)
Self-confinement of staff with residents may reduce the number of infections, probability of facility contamination, and number of deaths. Quarantine for new admissions may reduce the number of infections. Testing of new admissions and intensified testing of residents and of staff after holidays may reduce the number of infections, but the evidence is very uncertain. The evidence is very uncertain regarding whether restricting admissions of new residents reduces the number of infections, but the measure may reduce the probability of facility contamination. Visiting restrictions may reduce the number of infections and deaths. Furthermore, it may increase the probability of facility contamination, but the evidence is very uncertain. It is very uncertain how visiting restrictions may adversely affect the mental health of residents.

Contact-regulating and transmission-reducing measures (6 observational studies; 2 modelling studies)
Barrier nursing may increase the number of infections and the probability of outbreaks, but the evidence is very uncertain. Multicomponent cleaning and environmental hygiene measures may reduce the number of infections, but the evidence is very uncertain. It is unclear how contact reduction measures affect the probability of outbreaks. These measures may reduce the number of infections, but the evidence is very uncertain. Personal hygiene measures may reduce the probability of outbreaks, but the evidence is very uncertain.
Mask and personal protective equipment usage may reduce the number of infections, the probability of outbreaks, and the number of deaths, but the evidence is very uncertain. Cohorting residents and staff may reduce the number of infections, although evidence is very uncertain. Multicomponent contact-regulating and transmission-reducing measures may reduce the probability of outbreaks, but the evidence is very uncertain.

Surveillance measures (2 observational studies; 6 modelling studies)
Routine testing of residents and staff independent of symptoms may reduce the number of infections. It may reduce the probability of outbreaks, but the evidence is very uncertain. Evidence from one observational study suggests that the measure may reduce, while the evidence from one modelling study suggests that it probably reduces hospitalisations. The measure may reduce the number of deaths among residents, but the evidence on deaths among staff is unclear.
Symptom-based surveillance testing may reduce the number of infections and the probability of outbreaks, but the evidence is very uncertain.

Outbreak control measures (4 observational studies; 3 modelling studies)
Separating infected and non-infected residents or staff caring for them may reduce the number of infections. The measure may reduce the probability of outbreaks and may reduce the number of deaths, but the evidence for the latter is very uncertain. Isolation of cases may reduce the number of infections and the probability of outbreaks, but the evidence is very uncertain.

Multicomponent measures (2 observational studies; 1 modelling study)
A combination of multiple infection-control measures, including various combinations of the above categories, may reduce the number of infections and may reduce the number of deaths, but the evidence for the latter is very uncertain.

Authors’ conclusions

This review provides a comprehensive framework and synthesis of a range of non?pharmacological measures implemented in long?term care facilities. These may prevent SARS-CoV-2 infections and their consequences. However, the certainty of evidence is predominantly low to very low, due to the limited availability of evidence and the design and quality of available studies. Therefore, true effects may be substantially different from those reported here.

Overall, more studies producing stronger evidence on the effects of non?pharmacological measures are needed, especially in low- and middle-income countries and on possible unintended consequences of these measures. Future research should explore the reasons behind the paucity of evidence to guide pandemic research priority setting in the future

Project website:https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD015085.pub2/full

PUBLICATIONS & OTHER OUTPUTS

Stratil_2021_NPI-LTCF_CD015085.pdf (2.9 MB)

Stratil_et_al-2021-Cochrane_Database_of_Systematic_Reviews.pdf (917.2 KB)

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

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Contact: Professor Bruce Guthrie (https://www.ed.ac.uk/profile/bruce-guthrie)

Host institution: University of Edinburgh, Advanced Care Research Centre

Project team: NHS Lothian Public Health Team (Gwen Bayne, Christine Evans, Frederike Garbe, Dermot Gorman, Naomi Honhold, Duncan McCormick, Richard Othieno, Janet E Stevenson, Stefanie Swietlik, Kate Templeton, Mette Tranter & Lorna Willocks Jenni Burton (University of Glasgow)

Funding information:

Project summary:

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

Outputs:

https://www.thelancet.com/journals/lanhl/article/PIIS2666-7568(20)30012-X/fulltext

Project website:

PUBLICATIONS & OTHER OUTPUTS

Prevalence, management, and outcomes of SARS-CoV-2 infections in older people and those with dementia in mental health wards in London, UK: a retrospective observational studyComplete

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Contact: Gill Livingston https://www.ucl.ac.uk/psychiatry/people/livingston-g

Host institution: University College London

Project team: Hossein Rostamipour, Paul Gallagher, Chris Kalafatis, Abhishek Shastri, Lauren Huzzey, Kathy Liu, Andrew Sommerlad, Louise Marston

Funding information:

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.

Outputs:

Findings: https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(20)30434-X/fulltext -https://doi.org/10.1016/S2215-0366(20)30434-X

Project website:

PUBLICATIONS & OTHER OUTPUTS

Taking a break. Use of residential respite by people with dementia and carers: access, experience, outcomes (UK)Complete

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Contact: Laura Cole https://www.kcl.ac.uk/people/laura-cole

Host institution: NIHR Policy Research Unit on Health and Social Care Workforce, The Policy Institute, King’s College London

Project team: Kritika Samsi, Jill Manthorpe, Laura Cole and Katharine Orellana

Funding information: Alzheimer’s Society (Grant ref 458)

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

Outputs:

2021

Project website:https://www.kcl.ac.uk/scwru/res/capacity/respite https://kclpure.kcl.ac.uk/portal/en/projects/taking-a-break-use-of-residential-respite-by-people-with-dementia-and-carers-experiences-access-outcomes(1916b831-03d7-4a0a-be5c-6bf52b941b04).html

PUBLICATIONS & OTHER OUTPUTS

The impact of COVID-19 public health measures on social support service usage for dementia and ageingComplete

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Contact: Clarissa Giebel https://www.liverpool.ac.uk/population-health-sciences/staff/clarissa-giebel/

Host institution: University of Liverpool

Project team: Clarissa Giebel

Funding information: NIHR ARC NWC & University of Liverpool COVID-19 Strategic Research Fund

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 website:

PUBLICATIONS & OTHER OUTPUTS

The impact of the first UK Covid-19 lockdown on carers and people living with low prevalence dementia: results from the Rare Dementia Support surveyComplete

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Contact: Dr Aida Suarez Gonzalez https://iris.ucl.ac.uk/iris/browse/profile?upi=ASUAR45

Host institution: UCL

Project team: Please see instutional link

Funding information: This research (The impact of multicomponent support groups for those living with rare dementias, (ES/S010467/1)) was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). ESRC is part of UK Research and Innovation. The views expressed are those of the author(s) and not necessarily those of the ESRC, UKRI, the NIHR or the Department of Health and Social Care. Rare Dementia Support is generously supported by the National Brain Appeal (https://www.nationalbrainappeal.org/

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.

 

Outputs:

Results

184 carers and 24 people with dementia completed the survey. People with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%) and well-being (57%) according to their carers. Carers also reported a reduction in the support received for caring (55%). 93% of carers of people living in care homes reported a reduction in their ability to provide care. 26% of carers reported changes in the medication of the person with dementia during the lockdown. 74% of people with dementia reported decreased ability to connect with people socially.

Conclusions

People with dementia experienced a worsening of dementia symptoms, removal of support and increased difficulty to connect with other people socially during the 1st wave of Covid-19. Carers encountered barriers to both receiving and providing support and a decline in their own mental health and well-being.

 

A pre-print of this paper is available at: https://www.medrxiv.org/content/10.1101/2020.12.18.20248455v1

Project website:https://www.medrxiv.org/content/10.1101/2020.12.18.20248455v1

PUBLICATIONS & OTHER OUTPUTS

Top Tips for Tricky Times - research project (UK)Complete

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Contact: Claire Goodman https://researchprofiles.herts.ac.uk/portal/en/persons/claire-goodman(77079296-0427-4053-bb1d-b46245a9ebb0).html

Host institution: University of Hertfordshire

Project team: University of Hertfordshire: Kathryn Almack, Frances Bunn, Claire Goodman, Angela Dickinson, Melanie Handley, Elspeth Mathie, Andrea Mayrhofer University of East Anglia: Tamara Backhouse, Diane Bunn, Lee Hooper, Florence Jimoh, Anne Killet University of Kent: Ann-Marie Towers

Funding information: This work was supported by the National Institute for Health Research (supported by the NIHR Applied Research Collaboration (ARC) East of England and the cross-ARC care home research collaboration.

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.

Outputs:

Eight Top Tips for Tricky Time resources are available to download on the ARC East of England website: https://arc-eoe.nihr.ac.uk/covid-19-projects-innovations-and-information/covid-19-resources-training-information/top-tips
Journal article: https://journal.ilpnetwork.org/articles/10.31389/jltc.43/

Project website:https://arc-eoe.nihr.ac.uk/covid-19-projects-innovations-and-information/covid-19-resources-training-information/top-tips and Peer reviewed article https://journal.ilpnetwork.org/article/10.31389/jltc.43/

PUBLICATIONS & OTHER OUTPUTS

Unlocking Lockdown: Helping day centres to safely reopen following lockdown restrictionsComplete

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Contact: Katharine Orellana https://www.kcl.ac.uk/people/katharine-orellana1

Host institution: King's College London

Project team: Dr Katharine Orellana Dr Kritika Samsi Dr Caroline Green Professor Jill Manthorpe

Funding information: NIHR Applied Research Collaborative South London (Social Care theme)

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.

Outputs:

Helping adult centres to ‘unlock lockdown’:

Part 1 covers some of the practicalities of re-opening. It draws on guidance related to Coronavirus or COVID-19, but also on other guidance related to social care, and relevant guidance, advice, and action points for regulated settings (e.g. early years day care, care homes), some of which is also relevant to day centres. It prompts providers to think about the specifics of their own activities. As every setting is different, providers will need to use their professional judgement, and take account of public health guidance to maximise safety but also wellbeing for everyone. Sections cover: infection control, communications, supporting staff and volunteers, and yourself, final things providers are likely to want to do before re-opening, and there is a practical scenario planning tool. At the end are the source documents and further resources.

Part 2 prompts providers to reflect on what has happened, what else you may wish to think about, the process of moving forwards and any learning that will be helpful for the future. Individual sections can be completed according to the stage providers are in.

Project website:https://www.kcl.ac.uk/scwru/res/ARC-SL/unlock-lockdown

PUBLICATIONS & OTHER OUTPUTS