Completed or ongoing 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. It will be updated and expanded as we get more information, and as the numbers of projects grow we will move this to a searchable page. If you would like to to contribute information about you project, please send the following to info@ltccovid.org:

  • Project title
  • Name of contact person and link to institutional page
  • Name of host institution (university, research centre, etc)
  • List of team members
  • Funding information (if funded)
  • One paragraph describing objectives, population/settings included and methods
  • When are outputs expected
  • Links to project’s website (if there is one) and any publications you may have already
  • A list of keywords to facilitate searching

Ongoing projects:

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

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

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

Team members: 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)

Funding: Northern Ireland Social Care Council, Southern Health and Social Care Trust, NIHR Policy Research Programme grant, Public Health Agency HSC R&D Division

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

Links to project’s publications: Phase 1 full report:  HSC C19 Workforce Report May_with cover.pdf and phase 1 executive summary:  Workforce Survey Exec Sum May_with cover.pdf

Keywords: Health and social care, workforce, coping, quality of working life, wellbeing, support

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

Contact: George Palattiyil at the University of Edinburgh, http://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)

Team members: 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: Chief Scientist Office. 6 month 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.

When are outputs expected: 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)

To find out more: https://www.creativecovidcare.com/  a platform

Keywords: COVID, Care homes, Care home relatives, Social distancing

Mental health impact of SARS-COV-2 second wave pandemic on long-term facility personnel in Poland

Contact: Adrianna Senczyszyn, https://www.en.umed.wroc.pl/

Host institution: Department of Psychiatry, Wroclaw Medical University, Wroclaw, Poland

Team members: Adrianna Senczyszyn, Katarzyna M. Lion, Dorota Szcześniak, Elżbieta Trypka, Justyna Mazurek, Marta Ciułkowicz, Maria Maćkowiak, Marta Lenart, Agnieszka Cyran, Joanna Rymaszewska

Funding: none

Summary: The study aims to assess the long-term psychological consequences (psychopathological symptoms, anxiety and sleep disturbances) associated with the exposure of LTCF employees to the second wave COVID-19 pandemic in Poland. Access to personal protective equipment, mental health support at the workplace will be also examined as potential factors modifying the level of psychological distress. Quantitative data will be gathered by a population-based on-line survey administered between September 15 and November 15 2020 among LTCF personnel in Poland. Additionally, qualitative data will be collected through a focus group with LTCF employees. The project is a continuation of the research on psychological consequences arising from the exposure of LTCF employees in Poland to the SARS-CoV-2 crisis between May and June, 2020.

Outputs are expected to be available in February 2021

To find out more: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7501840 and https://ltccovid.org/2020/11/05/recommendations-to-support-the-mental-health-of-long-term-care-facility-personnel-during-the-covid-19-pandemic-based-on-a-national-survey-poland/

Keywords: COVID-19; medical personnel; long-term care facilities; longitudinal studies, nursing homes; psychopathological symptoms; public health

Protecting environments for the Older people during the pandemic COVID-19 (Spain), Entornos de las personas mayores protectores en situaciones de emergencia sanitaria (COVID-19)

Contact: Dr Vicente Rodríguez vicente.rodriguez@cchs.csic.es, Carmen Pérez de Arenaza carmen.perezdearenaza@cchs.csic.es

Host institution: Institute of Economics, Geography and Demography (IEGD). Spanish National Research Council (CSIC)

Team members: Fermina Rojo-Pérez (IEGD, CSIC), Gloria Fernández-Mayoralas (IEGD, CSIC), Joao Forjaz (Institute of Health Carlos III), Carmen Rodríguez-Blázquez (Institute of Health Carlos III), Diego Sanchez-González (National Distance Education University, UNED), Rocío Fernández-Ballesteros (Autonomous Unversity, Madrid), María Angeles Molina-Martínez (Francisco de Vitoria University), Salomé Martín-García (EULEN Servicios Sociosanitarios)

Funding: Spanish National Research Council (CSIC). COVID-19 Program (ref. 202010E158 – CSIC-COV19-050), with additional funding provided by the CSIC General Foundation under the program Reporting Science, for results dissemination and communication (ref. FGCCLC‐2021‐0012)

Summary: The project aims at analyzing the situation of the older people living in long-term care centres in the region of Madrid paying attention to the personal conditions, the health situation, the coping and resilient feelings facing the pandemic, the family and social relations, the social isolation and loneliness, the supporting conditions of living environments and their well-being and quality of life. A review of public policy measures regarding care homes will be also carried out. Research strategy consists on a combination of methods, quantitative survey and in-depth interviews. The project wants to give voice to older residents as the main source of information by means of a field work that involves access to residences that meet certain security requirements, respect for people’s dignity and non-invasion of your personal situation. Compliance with these conditions is ensured by the approval of the study in the Bioethics Committee of the Higher Council for Scientific Research.

When are outputs expected: The Project deadline is the end of 2021, when most scientific outcomes and dissemination and communication should be completed. Some intermediate results are expected to be presented in the meantime

To find out more: Project updates will be provided on twitter (@CSICresideCOVID) and through blogs etc.

Keywords: LTC environments, care homes, older people, living conditions, policy measures, Madrid, Spain

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

Contact persons: Florin Vadean and Shereen Hussein; www.pssru.ac.uk;

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

Team members:   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: Health Foundation Efficiency Research Programme

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.

When are outputs expected: Ongoing

To find out more: www.pssru.ac.uk/resscw/frontpage

Keywords: Workforce, retention, Social care, sustainability

Covid-19 and medium term impact on Italian Long-Term Care sector

Contact: Elisabetta Notarnicola https://www.cergas.unibocconi.eu/wps/wcm/connect/cdr/cergas/home/people/affiliates/notarnicola+elisabetta

Host institution: CERGAS SDA Bocconi, Center for research on health and social care management at SDA Bocconi School of Management, Milan, Italy

Team members: Sara Berloto, Giovanni Fosti, Francesco Longo, Elisabetta Notarnicola, Eleonora Perobelli, Andrea Rotolo

Funding: Essity Italian Branch

Summary: The Coronavirus outbreak shed light on major weaknesses that have been characterizing the Italian Long Term Care (LTC) for years. The research focuses on identifying which one were exacerbated in this time of crisis and so to support the understanding of the discontent that the sector has been experiencing over the past decade and future routes of innovation. The analysis is made of four parts: first, analyzing the main features of the Italian LTC sector before the Covid-19 outbreak to investigate the origins of the sector’s weaknesses; second, to deep dive on what happened in nursing homes at the peak of the emergence to investigate the role that the above-mentioned weaknesses played; third, analyzing regional policies for the LTC sector enacted in the hardest months for the country so to assess the institutional attitude towards the sector from the perspective of the public authorities in charge of regulating LTC, namely Regions; last, investigating care providers perspectives so to collect their original point of view concerning the impact of Covid-19 on the sector future.  Consistently, the research approach is based on data concerning: LTC services distribution in the country; the spread of the Coronavirus among elderly in Italy and in nursing homes; a mapping of norms enacted in 9 regions on LTC during phase 1 and phase 2 of the emergency; a survey with care providers concerning the impact of Covid-19 on the sector. The research wants to contribute by discussing the main managerial issues stakeholders and policy makers should work on to solve the sector’s major weaknesses and support the sector in the future. Some example of topics that are discussed are: providers’ economic and financial sustainability; the management of human resources; measures to ensure proper coordination among LTC and healthcare services, and among the public and private world; the mission the LTC sector should pursue, along with its services.

When are outputs expected: To be published on an annual report, forthcoming January 2021

To find out more: https://www.cergas.unibocconi.eu/wps/wcm/connect/Cdr/Cergas/Home/Observatories/OLTC_/

Keywords: LTC policy, Sector crisis, financial sustainability, care providers, regional policies, Italy

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

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

Host institution: The University of Manchester, UK

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

Funding: 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).

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

To find out more: https://www.research.manchester.ac.uk/portal/en/researchers/marcello-morciano(f4952779-6cc5-496d-a181-351ff636e1be)/activities.html, Analysing the structure of the care home market in Greater Manchester (https://www.arc-gm.nihr.ac.uk/projects/care-home-marketplace-GM )

Keywords: care homes, excess deaths, England.

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)

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

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: This work was funded by the Dunhill Medical Trust (project reference 2020CD\1). The views expressed are those of the author(s) and not necessarily those of the funder.

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:

  1. 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;
  2. To describe what worked well and what more is needed for care and treatment of older people with COVID-19;
  3. To identify key lessons for supporting infected older people to recover well or, if that is not possible, to die well;
  4. 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
  5. 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: 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.

Keywords: Care homes, long-term care, older people, COVID-19, pandemic

Mapping the impact of COVID-19 on unpaid carers. Findings from a rapid review

Contact: Klara Lorenz-Dant; https://www.lse.ac.uk/cpec/people/klara-lorenz

Host institution: Care Policy and Evaluation Centre, London School of Economics and Political Science

Other team members: Adelina Comas-Herrera

Funding: none

Summary: We conducted a rapid review of the academic and grey literature to map the emerging evidence of the impact the COVID-19 pandemic and related public health measures have on unpaid family carers supporting adults with care needs. Our review spans evidence from Europe, Asia, Australasia, North America and Latin America.

Outputs expected: late 2020/ early 2021

Keywords: unpaid, informal, family care, COVID-19

The impact of Covid-19 related public health strategies on the lives of older people living in Uganda 

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

Host Institution: University of Liverpool

Funding: NIHR ARC NWC & University of Liverpool ODA SeedFund

Summary: This is a collaboration between Liverpool and the ARCAD in Uganda. The ARCAD is led by Dr Isaac Ddumba, and in by June this year, researchers in Uganda conducted 30 semi-structured interviews with older adults (aged 60+) about their experiences of how public health measures have impacted on their lives. We have submitted the first paper which is currently undergoing review, and are hoping for the first findings to be published by Christmas. What already emerged early on from the interviews was the severe impact on the basic necessities of life that the pandemic is having.

Outputs expected: Christmas 2020

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)

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

Host Institution: University of Liverpool

Funding: NIHR ARC NWC

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 expected: Early – Spring 2021

Emergency strategies for mitigating the effects of Covid-19 in care homes in low and middle-income countries (Brazil, Mexico, South Africa)

Contact: Peter Lloyd-Sherlock https://people.uea.ac.uk/p_lloyd-sherlock

Host institution: University of East Anglia

Team: Karla Giacomin (CEMAIS Foundation, Brazil), Meirelayne Duarte (University of Salvador, Brazil), Monica Frank (University of Salvador, Brazil), Veronica Montes de Oca (Autonomous University of Mexico), Marissa Vivaldo (Autonomous University of Mexico), Almudena Ocejo Rojo (Mexico City Government Department of Social Inclusion and Social Welfare), Leon Geffen (Samson Institute for Ageing Research, South Africa), Gabrielle Kelly (Samson Institute for Ageing Research, South Africa).

Funding: UKRI GCRF/Newton Fund Agile Response call to address COVID-19

Summary: The project will develop and validate a conceptual framework which aims to enhance the capacity of state agencies in LMICs to address the potential effects of COVID-19 in care homes for older people. This will include (i) obtaining baseline information about vulnerability to COVID-19 for all care homes in three different sites, including unregistered care homes); (ii) reviewing current practice of relevant state agencies including intersectoral collaboration and specific responses to the pandemic; (iii) continual engagement with stakeholders to support enhanced practice; (iv) monitoring and review of changes to practice and related outcomes in care homes over an 18 month period. 

 We will apply a range of methods, including a mixed-methods survey of care homes, process evaluation and rapid review, and will conduct comparative analysis and dissemination to support the application of insights beyond the three study sites.

Outputs expected: 2021

To find out more: https://corona-older.com/2020/11/05/developing-and-implementing-a-strategy-for-covid-19-and-long-term-care-facilities-for-older-people-in-the-brazilian-state-of-bahia/ and https://corona-older.com/2020/06/09/an-emergency-strategy-for-managing-covid-19-in-care-homes-in-lmics-the-ciat-framework-version-1/

Keywords: COVID-19, Long-term care facilities, Low and middle-income countries, Brazil, Mexico, South Africa

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

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

Team members: Kritika Samsi, Jill Manthorpe, Laura Cole and Katharine Orellana

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

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

When are outputs expected: 2021

To find out more: https://www.kcl.ac.uk/scwru/res/capacity/respite and 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

Keywords: Respite, care homes, dementia, carers

Caring from a Distance: using new and familiar means of keeping in touch with family and friends in care homes during COVID-19 (UK)

Contact Person: Caroline White https://www.hull.ac.uk/staff-directory/caroline-white

Host institution: University of Hull

Team members: Caroline White, Jane Wray, Clare Whitfield, Emma Wolverson

Summary: This study uses an online survey to explore carers’ experiences of staying in touch with family and friends living in care homes during COVID-19, during which many care homes have had no or restricted visiting. The study includes carers of people living with dementia; older adults; people with learning disabilities/intellectual disabilities, and physical disabilities. The aim of the study is to understand what works/does not work well, and provide better understanding of how families, friends and care home residents can keep in touch when carers can not visit as often as they would wish; if for example, they are ill, live at a distance, have other caring or employment responsibilities.

Link: the survey is at https://hull.onlinesurveys.ac.uk/caring-from-a-distance-care-home-survey (and is available until December 2020)

Expected outputs: Spring 2021

Key words: family carers; care homes; COVID-19; visiting restrictions

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 perspective

Contact: Kathryn Hinsliff-Smith

Host institution: De Montfort University, Leicester, UK. https://www.dmu.ac.uk/research/centres-institutes/ihhpsc/index.aspx

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

Funding: no external funding

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

When outputs are expected: early 2021

To find out more: https://www.dmu.ac.uk/research/centres-institutes/ihhpsc/project-information.aspx

Keywords: Care homes, older people, family carers, COVID, visiting, restricted access, technology

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)

Contact: Kathryn Hinsliff-Smith

Host institution: De Montfort University, Leicester, UK. https://www.dmu.ac.uk/research/centres-institutes/ihhpsc/index.aspx

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: no external funding

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 for empirical published studies

When are outputs expected: early 2021, pre print 2020

To find out more: https://www.dmu.ac.uk/research/centres-institutes/ihhpsc/project-information.aspx

Keywords: Care homes, older people, family carers, COVID, visiting, restricted access, technology

Understanding contributors to quality of care in long-term care and changes under conditions related to the COVID-19 pandemic (Canada)

Contact person: Sara Luck, BAScH Honours student, under the supervision of Dr. Katie Aubrecht, Canada Research Chair Health Equity & Social Justice

Host institution: Spatializing Care: Intersectional Disability Studies Lab, St. Francis Xavier University

Funding: Canada Research Chairs Program Research Stipend

Summary: This research study investigates the impact of COVID-19 on quality of care in residential long-term care (LTC) in New Brunswick, Canada using a qualitative description design to explore what contributes to quality of care for residents living in long-term care, and how this could change in times of crisis from the perspective of long-term care staff.  Interviews were conducted with a broad range of staff at one LTC home. A semi-structured interview guide and approach to thematic analysis was framed by a social ecological perspective, making it possible to include the individual and proximal social influences as well as community, organizations, and policy influencers. The learnings and insights gained will improve the understanding of quality of care, as well as potential barriers and facilitators to care during times of crisis within rural Atlantic Canada.  

When are outputs expected: March 2021

To find out more: https://www2.mystfx.ca/sociology/spatializing-care-lab

Keywords: COVID-19; Long Term Care; Quality of Care; Staff Perspectives; Social Ecological Approach; Atlantic Canada

Preparedness of Brazilian care homes managers to face the COVID-19 pandemic (Brazil)

Contact person: Patrick Alexander Wachholz

Host institution: Professional Master´s degree in Clinical Research centre, Medical School (FMB) of São Paulo State University (Unesp), Botucatu Campus 

Team: Patrick A. Wachholz  (Unesp), Alessandro Ferrari Jacinto (UNIFESP),Ruth Caldeira de Melo (USP), Paulo J.F. Villas Boas (Unesp)

Funding: none

Summary: This study aimed to evaluate the preparedness and adherence of Brazilian care home managers to the recommendations of the World Health Organization infection prevention and control guidance for long-term care facilities in the context of COVID-19. The authors created a 46-item questionnaire using the ‘Infection prevention and control guidance for long-term care facilities in the context of COVID-19’, published by the World Health Organization on March 21st, 2020. We divided the questionnaire into nine sections: prevention, physical distance within the institution, rules for visitors, prospective surveillance for COVID-19 among residents, prospective surveillance among employees, source control, restrictions on movement and transportation, provision and availability of personal protective and cleaning equipment, technical support to face the pandemic. We created a global score of adherence to the IPC guidance based on the adoption of 20 questions related to IPC original questionnaire. We considered it as ‘excellent’ when at least 14/20 recommendations (70%) were fulfilled, as ‘good’ when 10 to 13 questions (50 – 69%),  and ‘low’ when less than 12 items (<49%) were answered positively. We recorded the overall number of deaths and residents (and mortality rates) informed by care home managers in 2019 and 2018, and hope to compare this data with 2020 next year and identify if adherence to IPC recommendations influenced these rates.

 Outputs expected: end November 2020 (paper with descriptive data)

Evaluating and replicating local accountability platforms for residential care homes and social care services in Latin America (Argentina)

Contact: Peter Lloyd-Sherlock https://people.uea.ac.uk/p_lloyd-sherlock

Host institution: University of East Anglia

Team: Lucas Sempe (UEA, UK), Nelida Redondo (Fundación SIDOM, Argentina), Magdalena Saieg (Fundación Navarro Viola, Argentina), Silvia Gascón (Red Mayor La Plata, Argentina), Lisandro Mariño (Camara de Hogares y Centros de Día de la Provincia de Buenos Aires, Argentina)

Funding: Healthy Longevity Global Grand Challenge (UKRI).

Summary: Developing countries already contain large numbers of older people with social care needs, leading to a rapid growth in private provision, including residential services. Many operate on an informal, entirely unregulated basis. We have developed an online platform for sharing information about the quality of services in care homes for the city of La Plata, Argentina. This responded to concerns about poor service quality, an absence of public information and the limited capacity of official local regulators. The site, launched in 2019, consists of a simple interactive information-sharing platform. The site provides updated information about care homes and a set of service quality principles, developed in partnership with care home directors. It enables service users to provide feedback about providers. This feedback is not directly published on the site: instead, complaints are investigated and providers removed from the site if they are confirmed. The site also provides general information for service users to support the selection and assessment of social care services, and (more recently) the status of the COVID-19 pandemic in local care homes. Our project will evaluate the La Plata intervention, along with new related projects by other organisations in Argentina. We will assess the feasibility and potential benefits of scaling up over the next three years.

When are outputs expected: 2021

To find out more: http://www.redmayorlaplata.com/

Keywords: Long-term care facilities; Quality; Information; Latin America

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

Principal investigator: Jennifer Freeman

Host institution: University of Plymouth

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

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

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

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

Principal investigator: Irene Higginson

Host institution: King’s College London

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

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.

For more information: https://www.kcl.ac.uk/cicelysaunders/research/evaluating/covpall-study

Impact of COVID-19 pandemic on care home pathways, outcomes and safety of care (UK)

Principal investigatorJoanne Knight

Host institution: Lancaster University

Funding: Medical Research Council, UK Research and Innovation (COV0466)

Summary: Deaths in care homes more have increased during the pandemic. The team’s objective is 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. They will analyse a dataset linking digital records of care home residents with their health service record, and will undertake interviews to understand changes in decision making and referral patterns

For more informationhttp://www.research.lancs.ac.uk/portal/en/upmprojects/dsi–covid–impact-of-covid19-pandemic-on-care-home-pathways-outcomes-and-safety-of-care(f07e7f46-2863-4735-bc85-981b01e46818).html

Project timeline: August 2020 to August 2021.

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

Principal investigatorClive Ballard

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

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

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.

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

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

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

Host institution: University of Liverpool

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

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 next week.

Outputs expected: Early 2021

Completed studies:

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

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

Host institution: The University of Manchester, UK

Team members: Jonathan Stokes, Alex J Turner, Sharvari Patwardhan, Ian Hall, Evangelos Kontopantelis

Funding: 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).

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: Pre-print https://www.medrxiv.org/content/10.1101/2020.11.11.20229815v1.full.pdf, 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

To find out more: https://www.research.manchester.ac.uk/portal/en/researchers/marcello-morciano(f4952779-6cc5-496d-a181-351ff636e1be)/activities.html, Analysing the structure of the care home market in Greater Manchester (https://www.arc-gm.nihr.ac.uk/projects/care-home-marketplace-GM )

Keywords: care homes, excess deaths, England.

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

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

Host Institution: University of Liverpool

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

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.

Outputs expected: 3 papers already published, https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-020-01719-0, https://www.tandfonline.com/doi/full/10.1080/13607863.2020.1822292, https://onlinelibrary.wiley.com/doi/full/10.1002/gps.5434, more currently under review

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 study

Contact person: Gill Livingston

Host institution: University College London

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

Funding: None

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

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

Keywords: dementia COVID-19, mental health, psychiatry, deaths

Experiences and needs of caregivers of persons with dementia during the COVID-19 pandemic and lockdown in a city in India

Contact: Sridhar Vaitheswaran; www.scarfindia.org; www.dementiaindia.org 

Host institution: Schizophrenia Research Foundation (SCARF) India

Team members: Dr. Sridhar Vaitheswaran, Miss. Monisha Lakshminarayanan, Dr. Vaishnavi Ramanujam, Dr. Subashini Sargunan, Miss. Shreenila Venkatesan

Funding: Not funded

Objective: To describe the experiences and needs of caregivers of persons with dementia during the COVID-19 pandemic and lockdown in a city in India.

Design: Qualitative study using a telephonic semistructured interview.

Setting: A specialist geriatric outpatient mental health service based in a non-governmental organization in Chennai, India.

Participants: A purposive sampling of family members of persons with dementia registered in the database and seen within the previous 6 months.

Findings: Thirty-one caregivers participated. Thematic analysis of the data showed two sets of issues that the caregivers of persons with dementia faced in their experiences during the pandemic. The first set was unique to the caregivers that directly related to their caregiving role, while the second set did not relate directly to their caregiving role. These two sets also appeared to have a two-way interaction influencing each other. These issues generated needs, some of which required immediate support while others required longer-term support. The caregivers suggested several methods, such as use of video-consultations, telephone-based support and clinic-based in-person visits to meet their needs. They also wanted more services postpandemic. Conclusion: Caregivers of persons with dementia had multiple needs during the pandemic. Supporting them during these times require a pragmatic multilayered approach. Systemic changes, policies and frameworks, increased awareness, use of technology, and better access to health are necessary.

Publications: 10.1016/j.jagp.2020.06.026

Keywords: Dementia, COVID-19, pandemic, disaster, needs, caregivers, India, low and middle-income country

Estimates of the rate of infection and mortality by COVID-19 in care homes for older people in Brazil

Contact: Patrick Alexander Wachholz

Host institution: Professional Master´s degree in Clinical Research centre, Medical School (FMB) of São Paulo State University (Unesp), Botucatu Campus 

Team: Patrick A. Wachholz  (Unesp), Virgilio Garcia Moreira (UERJ), Déborah Oliveira (UNIFESP), Helena Akemi Wada Watanabe (USP), Paulo J.F. Villas Boas (Unesp)

Funding: none

Aims: This study aimed to describe the infection and mortality rates related to COVID-19 in older people living in Brazilian care homes.

Methods : A cross-sectional and descriptive study was conducted using primary and secondary data sources. Nationwide care home administrators were invited to report the occurrence of infection and mortality related to COVID-19 infection from April to August 2020 using an online questionnaire. State Public Prosecutor Offices, State Health Departments, and the Unified Social Assistance System were also contacted for information. Data analysis involved descriptive statistics.

Outputs: A preprint (1st version) is available at  https://doi.org/10.1590/SciELOPreprints.1032, this paper was accepted and will be published soon in Geriatrics, Gerontology and Aging (www.ggaging.com). Versions were published in LTCcovid. see: https://ltccovid.org/2020/09/14/updated-report-covid-19-situation-in-brazilian-care-homes-and-actions-taken-to-mitigate-infection-and-reduce-mortality/

Challenges of COVID-19 in long-term care facilities for older adults in Hispano-American countries (Brazil ,Chile)

Contact person: Patrick Alexander Wachholz

Host institution: Professional Master´s degree in Clinical Research centre, Medical School (FMB) of São Paulo State University (Unesp), Botucatu Campus 

Team: Patrick A. Wachholz  (Unesp), Alessandro Ferrari Jacinto (UNIFESP), Ruth Caldeira de Melo (USP), José Luis Dinamarca-Montecinos (Universidad de Valparaíso, Chile),Paulo J.F. Villas Boas (Unesp)

Funding: none

Summary: This pilot study aimed to describe the preparedness of Hispano-American care homes managers to face the COVID-19 pandemic. This cross-sectional study was based on the application of an online survey adopting WHO IPC guidance. Descriptive statistics were used to summarize the data. 

Outputs: A preprint is available at https://doi.org/10.1590/SciELOPreprints.986. The paper was accepted and will be published soon in Geriatrics, Gerontology and Aging (www.ggaging.com)

COVID 70+ HOPE: nursing HOme pandemic preparedness and its effects on safety culture and well-being of PErsonnel (Portugal)

Contact person: Óscar Brito Fernandes (o.r.britofernandes@amsterdamumc.nl)

Host institution: Algarve Biomedical Center

Authors: Óscar Brito Fernandes1,2,3 , Pedro Lobo Julião, Nuno Marques4,5,6 , Niek Klazinga, Dionne Kringos2

Affiliations: (1) Department of Health Economics, Corvinus University of Budapest, Budapest, Hungary; (2) Department of Public and Occupational Health, Amsterdam Public Health research institute, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands; (3) NOVA National School of Public Health, Public Health Research Centre, NOVA University of Lisbon; (4) Department of Biomedical Sciences and Medicine, University of Algarve, Faro, Portugal; (5) Algarve University Hospital Center, Faro, Portugal; (6) Algarve Biomedical Center, Faro, Portugal

Funding information: The study was funded by the Algarve Biomedical Center. The participation of OBF, NK, and Dk occurred in the scope of a Marie Skłodowska-Curie Innovative Training Network (HealthPros — Healthcare Performance Intelligence Professionals) that has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement Nr. 765141 (https://healthpros-h2020.eu).

Study setting: Nursing homes in two regions of Portugal (Algarve and Alentejo) (April–July 2020)

Description: We examined nursing home Covid-19 preparedness and the personnel’s perceived safety, including nursing home resident safety culture, in two regions of Portugal; we also sought to understand differences among nursing homes in those two regions. We followed a two-stage voluntary-based engagement with nursing homes: first, nursing homes self-assessed their Covid-19 preparedness using a checklist (n=138); and second, a follow-up video/phone call with a nursing home for a checklist walkthrough discussion (n=83). Later, when residents and workers in nursing homes of both regions were tested for Covid-19, a web-based, self-administered survey was conducted among personnel (n=720). We used descriptive statistics to characterize attributes of participating nursing homes and survey respondents, and to examine missing data patterns. We summarized the Covid-19 preparedness with the geometric mean across facilities on the compliance within each larger group of items in the checklist. We synthesized data from open-ended questions (both from the checklist and follow-up calls) into major categories to capture insights from the facilities’ contributions. We assessed correlations and performed an exploratory principal axis factor analysis on a 10-item question in the first module of the survey. Composite response frequencies relative to the personnel’s resident safety culture were computed by averaging positive, negative and neutral responses.

Outputs: Study concluded, submission to peer-review journal by December 2020.