Research Projects Filters

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:

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A comprehensive analytic framework for COVID-19 mortality in long term care facilities and neighborhoods applicable to major metropolitan centersOngoing

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Contact: Michael D Cailas https://pubhealthgis.uic.edu/profiles/michael-cailas/

Host institution: School of Public Health, University of Illinois at Chicago

Project team: Greg Arling (Purdue University), Matthew Blaser, Michael D. Cailas, John R. Canar, Brian Cooper, Joel Flax-Hatch, Peter J. Geraci, Kristin M. Osiecki, Apostolis Sambanis

Funding information: This project has been funded by the Public Health Geographic Information Systems program at the Health Policy and Administration Division of the School of Public Health, University of Illinois at Chicago

Project summary:

The goal of our project is to develop and apply a comprehensive analytical framework for analyzing COVID-19 mortality locally within neighborhoods and long-term care facilities in a major metropolitan center. During the current public health crisis, information on COVID-19 mortality has typically been reported for the overall population, at single time points, and without regard to locations such as long-term care facilities or other congregate settings. In our study of COVID-19 mortality in Cook County IL (Chicago and suburbs) we examined patterns in COVID-19 mortality over time at the neighborhood level (postal Zip codes) in households and in nursing homes and other long-term care facilities (LTCFs). This framework provides:

  • reliable estimates of commonly quoted COVID-19 mortality indicators;
  • a better understanding of spatial and temporal distribution of COVID-19 deaths;
  • accurate depictions of the role of race, ethnicity, and socioeconomic status in COVID-19 mortality; and
  • population and organizational parameters that can inform strategies for public health interventions.

Cook County, the primary setting for this study is a large urban area, located in the US Midwest, with 5.15 million people and covering 1,635 square miles. It has rich racial and socio-economic diversity, and it has a multiplicity of neighborhoods and LTCFs spread across the county.

The major source of mortality data for this study is the Medical Examiner (ME) Case Archive of COVID-19-related Deaths. This archive is organized in a searchable online database format and contains residential address and other information about decedents (age, gender, race, and cause of death) for all deaths that occurred in Cook County from January 2020 to present.

Another source of data is the COVID-19 Nursing Home Data, maintained by the Centers for Medicare and Medicaid Services (CMS), which contains a count of COVID-19 cases and deaths, updated weekly, among residents and staff in each of the 15,000+ nursing facilities in the United States. Information about nursing facility characteristics comes from Medicare’s Nursing Home Compare and from Brown University’s LTC Focus data system. Data on overall mortality come from the Johns Hopkins Coronavirus Resource Center.

Data on population size, age, race/ethnicity, and socio-economic status are obtained from the US Census at the block group level, and then aggregated to the postal zip code level for much of the analysis.

Data preparation and statistical analysis are performed with the IBM® SPSS® Modeller 18.2.1. Geocoding, data projections, geospatial data integration, mapping, and initial spatial analysis are performed using ESRI’s ArcGIS Pro.

Outputs:

In the first phase of our study, we examined the 1st wave of COVID-19 (Spring and early Summer) in order to identify temporal and spatial patterns of mortality over time in Cook County. Our framework provided a reliable estimation of high-risk LTCFs and neighborhoods, while avoiding the distortions caused by the commonly used overall population figures.

Chicago began experiencing a 2nd COVID-19 wave, along with the rest of the US in October. Our analysis of 2nd wave mortality shows a repeat of the patterns from the 1st wave. Mortality rates have been highest in many of the same high-risk neighborhoods containing disproportionately more people from racial/ethnic minorities, older people, and people with low SES. The surge in mortality in LTCFs tracked closely with the surge overall within the county. However, there was no significant association between neighborhoods experiencing high rates of mortality and neighborhoods containing LTCFs with the highest mortality rates. Wave 2 mortality in LTCFs has thus far been difficult to predict; neither 1st waive mortality rates nor facility characteristics were significantly associated with 2nd wave mortality in LTCFs.

Nonetheless, findings from this phase of our research point to the urgency of immediate action to prevent an acceleration of COVID-19 cases and consequent deaths both in LTCFs and high-risk neighborhoods, especially neighborhoods with concentrations of minority group residents. Moreover, distribution of vaccines should be prioritized not only to nursing home residents and staff, as currently planned, but also residents of high-risk neighborhoods.

Within this analytical framework, currently research is underway to examine the second wave within a large geographic region such at the North Central Region of the United States; commonly known as the Midwest; which is almost half of the surface area of the European Union countries.

In addition, as COVID-19 vaccines roll-out over the next several months, we will monitor their uptake and effectiveness by tracking mortality rates in neighborhoods and LTCFs in Cook County, and more generally across the Midwest.

Project website:https://pubhealthgis.uic.edu/covid-19-dashboard-maps/

PUBLICATIONS & OTHER OUTPUTS

Analyzing_COVID-19_Methods_508-1.pdf (1.2 MB)

OJPHI_12.2020.pdf (723.5 KB)

A living systematic review of COVID-19 transmission and mortality in long-term careOngoing

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Contact: Maximilian Salcher-Konrad https://www.lse.ac.uk/cpec/people/maximilian-salcher-konrad

Host institution: London School of Economics and Political Science

Project team: Maximilian Salcher-Konrad, Arnoupe Jhass, Huseyin Naci, Marselia Tan, Adelina Comas-Herrera

Funding information:

Project summary:

This project aims to synthesise published studies of mortality rates and incidence of COVID-19 among people who use and provide long-term care (LTC). Acknowledging the evolving nature of evidence during the pandemic, this project was set up in April 2020 as a living systematic review with continuously updated database searches and publication of key findings. A protocol was published on the PROSPERO database of systematic reviews (CRD42020183557). Initial findings were reported on medRxiv and fed into a WHO Policy Brief on the prevention and management of COVID-19 in LTC.

We developed search terms for seven databases (MEDLINE; Embase; CINAHL Plus; Web of Science; Global Health; WHO COVID-19 Research Database; medRxiv) to identify all studies reporting primary data on COVID-19 related mortality and incidence of disease among LTC users and staff. We exclude studies not focusing on LTC. Included studies are critically appraised using the Joanna Briggs Institute critical appraisal tool for prevalence studies. We extract information on the number of deaths, COVID-19 related mortality rates, case fatality rates, and excess deaths (co-primary outcomes), as well as incidence of disease, hospitalisations, and ICU admissions. Findings are initially synthesised narratively. Upon assessment of the heterogeneity of populations in included studies, we will quantitatively synthesise rates of mortality and infection.

In the last published report (1 August 2020), a total of 54 study reports for 49 unique primary studies or outbreak reports were included, which documented the severe impact that COVID-19 had on LTC. In badly affected care homes, more than two thirds of residents may be infected with COVID-19, and close to one fifth of all residents at care homes with outbreaks may die as a result.

Outputs:

Project website:

PUBLICATIONS & OTHER OUTPUTS

COVID-19-sys-rev-mortality-31Jul2020-FINAL-FORMATTED.pdf (829.1 KB)

A Rapid Appraisal of U.S. Healthcare Workers’ and Long Term Care Workers’ Perceptions of Care Delivery in the Context of the COVID-19 PandemicOngoing

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Contact: Dena Shenk

Host institution: University of North Carolina Charlotte

Project team: Dr. Andrea Freidus Dr. Dena Shenk Christin Wolf

Funding information:

Project summary:

This project is a three-phase rapid qualitative appraisal of the perspectives of workers providing LTC to older adults in central North Carolina during the pandemic. We conducted semi-structured interviews with 75 participants using a purposive sample from May to November, 2020. We included participants from both the range of congregate LTC communities and also in-home and community based services. This is a mirror study conducted as part of the global efforts to study healthcare workers experiences during the pandemic spearheaded by the Rapid Research, Evaluation and Appraisal Lab (RREAL) at University College London. Due to the on-going nature of the pandemic, we are preparing to follow up through focus groups with our participants which will include plans for reopening and vaccination.

Outputs:

Blogpost and two published articles are included. We will continue to publish in a wide variety of academic and professional journals, as well as developing reports.

Project website:

PUBLICATIONS & OTHER OUTPUTS

AAGE-blog.How-is-the-pandemic-affecting-people-with-dementia-case-study.docx (18.7 KB)

Anth-and-Aging-article.pdf (368.4 KB)

Human-Org-2020.pdf (436.4 KB)

A Resident/Family-Centered, Team-Based Quality Improvement Collaborative Approach to Comprehensive PAndemic Preparedness in LOng-term Care Homes (PAPLOC study)Ongoing

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Contact: Akber Mithani https://www.fraserhealth.ca/bios/akber-mithani#.X_djcthKiUl

Host institution: Fraser Health Authority

Project team: Dr. Akber Mithani, Dr. Evelyn Cornelissen, Dr. Clayon Hamilton, Dr. Janice Sorensen, Dr. Adriaan Windt

Funding information: This project was funded by the following: Michael Smith Foundation for Health Research

Project summary:

Effective pandemic preparedness in LTC homes requires rapid and comprehensive implementation of promising practices and policies. The study will investigate a virtual quality improvement (QI) collaborative of six LTC homes in British Columbia, Canada to facilitate shared learning across multiple QI projects to address gaps in pandemic preparedness by teams involving family and friend caregivers, care aides, nurses, healthcare professional, managers and directors. An implementation science team will investigate: 1) How can QI teams use virtual collaboration to facilitate a systematic QI approach to pandemic preparedness? 2) How can the virtual collaboration tool be used to scale-up and spread promising practices and policies for pandemic preparedness across multiple homes through a QI collaborative? Using a concurrent mixed-methods study design, the virtual collaboration tool use and QI activities will be assessed and interviews will be conducted with QI team members about their experiences with the virtual QI collaborative approach.

Outputs:

The research will be completed by December 2021 and expected outputs include publishing results in academic / professional journals. The QI results and lessons learned will inform implementation of promising practices for pandemic preparedness in other LTC homes for scale-up and spread.

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams

PUBLICATIONS & OTHER OUTPUTS

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

AKCOVID: survey on the impact of the pandemic on 20-64 year olds in Austria, including informal carersOngoing

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Contact: Ricardo Rodrigues (contact person for long-term care)

Host institution: Institute for Advanced Studies (IHS), Vienna, Austria

Project team: Nadia Steiber (overall project coordinator), Andrea Schmidt (Austrian Public Health Institute), Cassandra Simmons (European Centre for Social Welfare Policy and Research), Ricardo Rodrigues (European Centre for Social Welfare Policy and Research)

Funding information: Chamber of Labour for Vienna (AK Wien), the European Centre for Social Welfare Policy and Research, and the Institute for Advanced Studies

Project summary:

This is a representative survey of the Austrian population aged 20-64 (N=2000) with detailed information on socio-demographics and impact of the pandemic on informal care (e.g. changes to intensity, prevalence and wellbeing and economic situation of carers), unmet needs and health, employment and income and education. A second wave is planned to be fielded in early 2021, making this a longitudinal survey allowing for more detailed analysis of data on heath and informal care, among other outputs.

Outputs:

Peer-reviewed journal articles and blog entries (in German and English) starting in early 2021 (see for example here: https://www.euro.centre.org/webitem/3855).

A preprint of the first article submitted is available for download here: https://www.researchgate.net/publication/346205616_Care_in_times_of_COVID-19_The_impact_of_the_pandemic_on_informal_caregiving_in_Austria

 

Project website:https://inprogress.ihs.ac.at/akcovid/

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

Blended Gaming COVID-19 Training System (BGCTS) with WHO guidelines for staff in residential care homes: A cluster randomised controlled trialOngoing

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Contact: Prof. Angela Y. M. Leung https://sn.polyu.edu.hk/whocc/en/aboutus.html

Host institution: School of Nursing, The Hong Kong Polytechnic University

Project team: Angela Y. M. Leung, Alex Molasiotis, Simon Lam, Justina Liu, Eliza Wong, Doris YP Leung, Mimi Tse

Funding information: Health and Medical Research Fund, (HMRF), Food and Health Bureau, The government of Hong Kong Special Administrative Region (Hong Kong), China

Project summary:

Objective: To assess the effect of the Blended Gaming COVID-19 Training System (BGCTS) on infection control practices, compliance rates and knowledge of standard precautions among all staff in residential care homes (RCHs). Design: A 2-arm single-blinded cluster randomized controlled trial. Setting: Twenty RCHs (out of the 70 RCHs in the established network). Participants: 188 staff (from 20 RCHs) will be randomized to the intervention group (IG) or the control group (CG) according to their RCHs. Intervention: The intervention is a blended mode of training (e-health mode blended with face-to-face sessions) and the contents are derived from ‘The COVID-19 Risk Communication Package For Healthcare Facilities developed by the World Health Organization. E-health mode refers to a 120-minute web-based training system covering 8 topics in 2 weeks. Short-clip videos and games are used. Two face-to-face 30-minute interactive sessions will be arranged for clarifying concepts. Main outcome measures: Primary outcome: compliance rate of hand hygiene and infection control practices (by non-participatory observations with a checklist on infection control practices). Observation will be made of the staff in the IG and CG when they are working in the facilities. Secondary outcomes: Knowledge and attitudes towards infection control (KAIC) and Self-reported Infection Control Practice (SICP) Expected outcomes: BGCTS will improve staff’s performance at infection control practices. The BGCTS is the first of this kind training, addressing the diverse health literacy levels of staff and helping RCH staff to comply with WHO infection control guidelines. RCHs can adopt BGCTS in staff development training in the future.

Outputs:

BGCTS will improve staff’s performance at infection control practices. The BGCTS is the first of this kind training, addressing the diverse health literacy levels of staff and helping RCH staff to comply with WHO infection control guidelines. RCHs can adopt BGCTS in staff development training in the future.

Project website:

PUBLICATIONS & OTHER OUTPUTS

BrainLive: Connecting Families Living with Dementia in Pandemic Situations and BeyondOngoing

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Contact: Dr Gloria HY Wong https://www.socialwork.hku.hk/gloriawong/

Host institution: The University of Hong Kong

Project team: Principal Investigator: Dr Gloria HY Wong Co-investigators: Professor Aimee Spector, Dr Ruizhi Dai, Professor Doris SF Yu, Dr Anthony PH Kong, Dr Hao Luo, Professor Martin Knapp, Professor Terry YS Lum Project manager: Mr. Jacky CP Choy

Funding information: Simon K.Y. Lee Foundation, a Hong Kong based philanthropic foundation with a mission to improve the well-being of the elderly and enhance the access to quality education by underprivileged children.

Project summary:

BrainLive, funded the Simon K.Y. Lee Foundation, is a 2-year project that mainly aims to develop a best practice model of barrier-free online dementia community support service using information and communications technology (ICT) and productive ageing to deliver intervention and care. In 2 years, we will develop a tested model that is effective and equitable, with good economic value for society, and ready to be widely implemented in various community service settings. The project targets to test the feasibility, acceptability and sustainability of an online community-based dementia service model consisting of a package of evidence-based social care and intervention services for families living with dementia delivered via ICT tools with trained young-old volunteers support, with the following objectives: 1) ensure access to evidence-based intervention and care under infection control situations; 2) prepare families living with dementia and service providers for future remote service development by enhancing their ICT literacy in the post-pandemic era; 3) build capacity of the community to care for families living with dementia by developing young-old volunteers for remote dementia service; 4) promote innovations by NGOs to explore full potentials of ICT-enriched service for continued service, including involvement of carers in the long-term; and 5) identify using service data the best combination of the standard service package and other infrastructure and support for an optimised model to recommend in Hong Kong.

Outputs:

Expected Sep 2022

Project website:

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

Care in times of the Corona pandemic from the perspective of those affected: a qualitative study on perceptions, ways of processing and actions of people with care needsOngoing

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Contact: Dr. Katrin Ratz https://www.public-health.uni-bremen.de/%20%20https://www.socium.uni-bremen.de/home/en/

Host institution: Institute of Public Health und Nursing Research SOCIUM Research Centre Inequality and Social Policy

Project team: Katrin Ratz, Henrik Wiegelmann, Thomas Kalwitzki

Funding information:

Project summary:

View Care: The primary goal of the project is to gain insights into the current situation, the experience, the organisation of needs and coping strategies of people in need of care during the Corona pandemic. The focus is put on the individual experience and the subsequent sense definitions of the individuals. The theoretical explanations of the current situation of people in need of care are extended by making the new reality’s processing of the subjects themselves a topic. This perspective has been virtually unexamined up to now. Sociological perspectives within the framework of reconstructive social research have only been marginally represented in care research so far. This study aims to expand the methodological and content-related repertoire of previous health services research.

Outputs:

Persons in need of care in outpatient and inpatient facilities in four different federal states will be interviewed. The Interviewees are independently able to give their consent to participate in the study. 20 qualitative interviews are planned, which will be conducted partly face to face and partly online.

Project website:https://www.uni-bremen.de/fb11

PUBLICATIONS & OTHER OUTPUTS

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

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

Host institution: University of Hull

Project team: Caroline White, Jane Wray, Clare Whitfield, Emma Wolverson

Funding information:

Project 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.

Outputs:

Expected Spring 2021

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

PUBLICATIONS & OTHER OUTPUTS

Confronted with COVID-19: Migrant live-in care during the pandemicOngoing

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Contact: Michael Leiblfinger http://decentcarework.net

Host institution: Johannes Kepler University Linz (AT), International Centre for Migration Policy Development (AT), Slovak Academy of Sciences (SK)

Project team: Michael Leiblfinger, Veronika Prieler, M?d?lina Rogoz, Martina Sekulová

Funding information: Michael Leiblfinger and Veronika Prieler are part of the trinational research project Decent Care Work? Transnational Home Care Arrangements (http://decentcarework.net) and draw on the Austrian part chaired by Brigitte Aulenbacher, funded by the Austrian Science Fund FWF (I 3145 G-29).

Project summary:

The employment of mainly female live-in care workers has become an important pillar of elderly care regimes within Europe. Especially in familialistic welfare states, circularly migrating live-in carers typically from Central and Eastern Europe fill, at least partially, the so-called care gaps emerging from demographic changes as well as the increasing labour market participation of women. Closed borders and other pandemic-related measures put a (temporary) halt to the transnational migration of care workers. Austria, Romania, and Slovakia represent a particular case for studying the effects of COVID-19 responses: Austria is a country with a legalised and highly institutionalised live-in care model. Roughly 80% of care workers come from Romania and Slovakia and commute to Austria in short-term cyclical rotas. As these rotas typically range from two to four weeks, the transnational care arrangements were affected earlier by travel restrictions than in countries where migrant carers stay for longer periods.
By looking at the three mentioned countries, the project examines how live-in care and its workers were affected by the pandemic. We analyse relevant policies and measures in Austria, Romania, and Slovakia and draw on media reports about live-in care and interviews with representatives of live-in care workers’ organisations. What role do the existing regulation of live-in care as well as sending and receiving countries’ pandemic responses play for the situation of care workers? How do care workers, brokering agencies, and their respective organisations react to the pandemic-related difficulties, how do they try to assert their interests, and to what extent does this influence the precarious working and living conditions of care workers? The paper written within the project shows that the pandemic highlighted the fragility of live-in care arrangements and underlined that care workers’ wants, needs, and interests were not only subordinated to the wants and needs of care recipients and their families, but were also at the mercy of several countries and their policies. While both issues have always been true, the national focus of pandemic-related measures drew renewed attention to them as well as to the deep social, gender, and regional inequalities across Europe manifested in care mobility.

Outputs:

Currently, a paper and presentations

Project website:

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 and Caregivers of Assisted living Residents: their Experiences and Support needs (COVCARES-AB/BC)Ongoing

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Contact: Matthias Hoben https://apps.ualberta.ca/directory/person/mhoben

Host institution: University of Alberta

Project team: Matthias Hoben, University of Alberta Colleen Maxwell, University of Waterloo Jennifer Baumbusch, University of British Columbia David Hogan, University of Calgary Kim McGrail, University of British Columbia Andrea Gruneir, University of Alberta Natasha Lane, University of British Columbia Joseph Amuah, University of Ottawa Stephanie Chamberlain, University of Alberta Lauren Griffith, McMaster University Corinne Schalm, Government of Alberta, Continuing Care Branch Heather Cook, Ministry of Health, British Columbia Hude Quan, University of Alberta Sheryl Zimmerman, University of North Carolina (Chapel Hill)

Funding information: This project is funded by Alberta Innovates: https://albertainnovates.ca/impact/newsroom/helping-the-helpers-impacts-of-covid-19-on-assisted-living-residents-family-friends/

Project summary:

RATIONALE
COVID-19 has had a devastating impact on the quality of care and lives of vulnerable older adults across Canada. Persons of advanced age with complex chronic conditions and frailty have high rates of infection (and atypical presentation), and if infected, increased risks for severe illness and serious health outcomes. In Canada, up to 85% of COVID-19 deaths have occurred among frail older adults in congregate care settings. While most media and research attention has focused on residents of long-term care (LTC) homes, far less attention has been paid to other common continuing care settings such as assisted living (AL). This is a significant omission given the rapid growth in AL across Canada (particularly within British Columbia [BC] and Alberta [AB]) and the fact that AL residents exhibit similar vulnerabilities to those in LTC and reside in care settings similarly affected by insufficient staffing, oversight and resources for infection prevention and control. Importantly, relative to LTC, AL facilities offer fewer services and have lower staffing levels (including fewer skilled staff members per resident). Consequently, there is an expectation for significant family involvement in AL resident care.

Family caregivers are essential to ensuring older AL residents receive timely and appropriate care. Variation in the type and amount of health and social care they engage in is closely linked with the health and social status of residents and with their own health and well-being. Though the immediate and longer-term effects of COVID-19 (and related workforce shortages, physical distancing and social isolation) on AL residents and their families are expected to be extensive and long-lasting, they remain to be investigated in Canada.

AIM & OBJECTIVES
Our overall aim is to illuminate and understand the impact of COVID-19 (and associated social distancing restrictions and policies) on the care and oversight provided by family caregivers within a diverse array of AL facilities, and the resulting consequences for the health and psychosocial well-being of these essential (though often invisible) care providers. Our prospective observational study will include 1,000 family caregivers randomly sampled from (publicly subsidized) AL facilities across AB and BC. Extensive primary data collection strategies (family caregiver & facility telephone surveys) will be complemented with linkages to health administrative data. We will employ descriptive statistics and hierarchical mixed models to examine:

  1. The effects of COVID-19 and related facility restrictions on the types/amount of health and social care provided to residents by key family caregivers. [Impact on essential care]
  2. The impact of COVID-19 overall, and of associated changes in care activities and engagement by family caregivers, on the general health, health behaviours and psychosocial well-being of these caregivers. [Impact on caregiver]
  3. The nature and timing of COVID-19 related facility infection prevention and control policies, practices, and communication strategies (with family caregivers) as reported by key facility informants vs. family caregivers. [COVID-19 Preparedness]

We will further explore variation in the above estimates and associations by select family caregiver (e.g., age, gender, socioeconomic status), resident (e.g., age, sex, functional status) and facility characteristics (e.g., size, region, for-profit status, COVID-19 testing/outbreak status, visiting policies).

IMPACT
Our research addresses a significant knowledge gap regarding a growing (albeit neglected) care setting expected to be significantly affected by COVID-19. Our findings will directly inform the development and conditions for scale-up of policy and practice interventions to (i) ensure timely communication with, and engagement of, family caregivers in AL during emergencies; and, (ii) permit rapid and enhanced emergency preparedness, staffing and services in AL. Interventions targeting both are essential for mitigating the adverse consequences of future outbreaks and restrictions on residents’ and family caregivers’ health and psychosocial well-being.

Outputs:

Our stakeholder partners (provincial & regional healthcare decision makers and family caregiver advocates) worked closely with the research team to
develop the project and will continue to do so throughout (to provide input on key priorities and analyses, assist with interpretation of findings and contextual framing of research deliverables (integrated knowledge translation). We will develop targeted end-of-grant dissemination strategies for different audiences. For stakeholder partners, we will work collaboratively to produce summary reports tailored to the needs of provincial/regional decision makers, family caregivers and resident councils, and facility administrators/staff. This will include a series of high-level reports and presentations to permit
discussion of policy and practice implications and strategies for improvement (via end-of-grant summits in AB and BC), lay presentations and reports for caregivers/residents, and project specific infographics, webinars and social media to engage the broader public. For academic audiences, our findings will be disseminated via peer-reviewed publications (e.g., CMAJ, Medical Care, JAMDA) and conference presentations (e.g., Canadian Geriatrics/Gerontology meetings, International LTC Policy Network).

Our research will contribute knowledge that will not only help mitigate the spread of COVID-19 but to also minimize impacts on vulnerable persons. It will help to protect the rights, dignity and care of a vulnerable population uniquely affected but currently neglected in COVID-19 related priorities for resources, staffing and services. The variability in COVID-19 preparedness, outbreak management, and adverse outcomes observed across AL and LTC settings illustrates the potential for evidence-informed best care policies, practices and interventions. With our collaborators and established AL research platform, our work will accelerate the availability of robust, real-time evidence to inform the development and conditions for scale-up of policy and practice interventions to (i) ensure timely communication with, and engagement of, family caregivers in AL; and, (ii) permit rapid and enhanced preparedness, staffing and services in AL. Both are key to mitigating adverse consequences of future outbreaks and restrictions on residents’ and family caregivers’ health and psychosocial well-being.

Project website:https://sites.google.com/ualberta.ca/covcaresab-bc/home

PUBLICATIONS & OTHER OUTPUTS

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

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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

Project team: Sara Berloto, Giovanni Fosti, Francesco Longo, Elisabetta Notarnicola, Eleonora Perobelli, Andrea Rotolo

Funding information: Essity Italian Branch

Project 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.

Outputs:

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

Project website:https://www.cergas.unibocconi.eu/wps/wcm/connect/Cdr/Cergas/Home/Observatories/OLTC_/

PUBLICATIONS & OTHER OUTPUTS

CovId-19 and SOcial isoLATion in dEmentia care (ISOLATE): impact and needs of people with dementia, informal and professional caregiversOngoing

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Contact: Mandy Visser https://www.lumc.nl/org/unc-zh/onderzoek/Kwaliteit-van-leven/ISOLATE-Covid-19socialeisolatiedementie/

Host institution: Leiden University Medical Center, Department PHEG

Project team: Dr. Mandy Visser Dr Hanneke Smaling Dr. Bram Tilburgs Prof. Wilco Achterberg

Funding information: This research was supported by the Netherlands Organisation for Health Research and Development (ZonMw) grant number 50-56300-98-533

Project summary:

Social isolation due to COVID-19 restrictive measures appear to have a major influence on the well-being of people with dementia, informal caregivers, and professional caregivers. While loneliness and challenging behavior may increase in people with dementia, social support for informal caregivers is reduced and their burden increases. In addition, rules regarding physical distance and the use of personal protective equipment complicates the work of healthcare professionals.

This study investigates the impact of social isolation during the COVID-pandemic on home- and long-term care for people with dementia, informal caregivers, and professional caregivers. Interviews with 20 informal caregivers and 20 professional caregivers about their concerns, problems, and needs regarding dementia care and social well-being in times of social isolation will be conducted.

Outputs:

Expected outputs of the project will be:

  • Insight into the concerns, problems, and needs of people living with dementia, informal caregivers, and professional caregivers in times of social isolation during the COVID-pandemic, in both home- and long-term care.
  • Recommendations for policy that can be applied to home- and long-term care, aimed to optimize social-wellbeing for people with dementia, their informal caregivers, and professional caregivers during isolation.

Project website:https://www.lumc.nl/org/unc-zh/onderzoek/Kwaliteit-van-leven/ISOLATE-Covid-19socialeisolatiedementie/

PUBLICATIONS & OTHER OUTPUTS

COVID-19 in Long-term Care Facilities - Challenges and Ressources in German Nursing Homes and Home Care ServicesOngoing

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Contact: Karin Wolf-Osterman https://www.ipp.uni-bremen.de/departments/health-care-research/en/?

Host institution: University of Bremen, Faculty 11 Human and Health Sciences, Institute for Public Health and Nursing Research

Project team: Karin Wolf-Ostermann Heinz Rothgang Dominik Domhoff Anna Carina-Friedrich Viktoria Hoel Franziska Heinze Benedikt Preuß Annika Schmidt Kathrin Seibert Claudia Stolle

Funding information:

Project summary:

In a multi-phase study, cross-sectional as well as longitudinal observational data on challenges and ressources of long-term care facilities in Germany during the COVID-19 pandemic are collected through an online-survey of directors of nursing and nurse managers. Since april 2020, two phases of data collection have been conducted. Responses for t1 (april to may 2020) include 824 nursing homes, 701 home care services and 96 daycare facilities. Responses for t2 (january to february 2021) inculde 385 nursing homes, 442 home care services and 80 daycare facilities. Next to descriptive statistics on prevalence of COVID-19 among residents and nursing staff, results include numbers on changes in the utilization of nursing care services during the pandemic, on availability of protective gear, on implementation of infection control guidelines and on the use of information and communication technologies (ICT) to support social participation of residents and orgnaization of care processes.

Outputs:

Results of this study contribute to the knowledge base on the specific challenges and needs of long-term care facilities, their residents and staff during the COVID-19 pandemic. Furthermore, the results can be used to initiate support by political actors and inform political decision making as well as national preparations for future comparable events. So far, results for t1 have been published differentiated for nursing homes and home care services/daycare in different journals. In addition, results on ICT use as well as an article on professional, scientific and health-servives related consequences are being published as book sections. Data from t2 is currently being analyzed.

Project website:https://www.ipp.uni-bremen.de/abteilungen/pflegewissenschaftliche-versorgungsforschung/projekte/?proj=808

PUBLICATIONS & OTHER OUTPUTS

Wolf-Ostermann-et-al.-2020-Corona-Befragung-in-ambulanten-Einrichtungen-in-Pflege-1012-5302.pdf (4.1 MB)

Rothgang-et-al-2020_1012-5302_a000760.pdf (4.2 MB)

Care-homes-and-Covid19-survey-of-care-homes-in-Germany-16-July-2020.pdf (289.1 KB)

COVID-19 in Nursing Homes: Who is leaving the Job?Ongoing

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Contact: Verena Cimarolli https://www.ltsscenter.org/

Host institution: LeadingAge LTSS Center @UMass Boston

Project team: Natasha Bryant Robyn Stone

Funding information: Aging in America

Project summary:

The LTSS Center @UMass Boston formed a partnership with WeCare ConnectTM to study the impact of COVID-19 on the workforce employed by LeadingAge members. WeCare ConnectTM is a program/service used by aging services providers at more than 1,000 locations to collect ongoing feedback from new and existing employees, and employees who resign. Managers use this information to develop real-time solutions that help reduce turnover and improve retention. During the first phase of the collaboration, the LTSS Center asked WeCare ConnectTM to add questions to its employee interview battery during May 2020. The questions were designed to assess employees’ perceptions of organizational COVID-19 preparedness and communication, as well as internal and external stresses experienced by employees. During the second phase of the project, funded by Aging in America Inc., researchers will identify nursing home employees who answered the COVID-related questions in May and subsequently resigned from their jobs. Researchers will use COVID-related data from the May 2020 interviews, and data on the reasons employees gave for resigning, to explore the following research questions:

  1. What are the specific pandemic-related reasons employees report for why they resigned?
  2. What are the specific COVID-related stresses and challenges assessed in May 2020 that are associated with the decision of nursing home workers to resign from their jobs during the pandemic?
  3. Do these specific challenges and stresses vary by type of nursing home employee?
  4. How does the quality of employer preparedness and communication around COVID-19 impact the decision of workers to resign from the job?

Outputs:

Mid-2021

Project website:

PUBLICATIONS & OTHER OUTPUTS

Covid-19 Management In NUrsing homes by outbreak TEamS (MINUTES) study: qualitative analyses on the impact of the pandemic in nursing homes (part 1)Ongoing

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Contact: Lisa van Tol

Host institution: Leiden University Medical Center, University Medical Center Groningen

Project team: Lisa van Tol MSc, Dr. Margot de Waal, Dr. Monique Caljouw, Dr. Hanneke Smaling, Arno Doornebosch MSc, Wendy Meester MSc, Janneke Groothuijse MSc, Dr. Sarah Janus, Prof Sytze Zuidema, Prof. Wilco Achterberg

Funding information: This research was supported by the Ministry of Public Health Welfare and Sport, the University Network of the Care Sector Zuid-Holland (UNC-ZH), and the University Network for care for Older persons of the University Medical Center Groningen (UNO-UMCG).

Project summary:

Dutch long term care organizations (LTC’s) installed outbreak management teams (OT’s) to coordinate covid-19 infection prevention and control. These LTC’s and relevant national policy organizations such as the ministry of health expressed the need to share experiences from these OT’s in order to learn and be inspired from each other. OT meeting minutes are next a valuable data source to monitor the impact of Covid-19 in nursing homes and source for creative ideas to tackle the challenges that arise.

The aim of the “Covid-19 Management In NUrsing homes by crisis TEamS” (MINUTES) study is to describe the challenges, impact and the response of the Covid-19 pandemic in Dutch nursing homes.
Participating LTC’s representing over 500 nursing home locations shared their OT’s’ minutes for thematic analysis. Minutes described crisis management, isolation and beds, personal protective equipment and hygiene, personnel, testing, vaccination, visiting, and wellbeing of residents and informal caregivers.

Outputs:

Expected outputs of the projects will be:

  • Insight into the challenges, impact and the response of the pandemic in nursing homes from the perspective of crisis management teams; Themes extracted from their minutes will be analyzed more in depth.
  • Weekly thematic summaries are shared with national policy institutes and participating organizations as policy input

Project website:https://www.lumc.nl/org/unc-zh/onderzoek/Kwaliteit-van-leven/Corona-onderzoekVerpleeghuizen/

PUBLICATIONS & OTHER OUTPUTS

UNC-ZH-UNO-UMCG-Factsheet-Corona-in-Nursing-Homes-in-NL-Minutes.pdf (860.4 KB)

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

COWORKER Nursing Home Study: Effects of COVID-19 on the mental health of nursing home workers in IrelandOngoing

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Contact: Dr Conan Brady / Prof Declan McLoughlin

Host institution: Trinity College Dublin (TCD)

Project team: Dr Conan Brady / Prof Declan McLoughlin / Prof Iracema Leroi / Prof Blanaid Hayes / Prof Martina Hennessy / Prof Agnes Higgins / Prof Ricardo Segurado / Ms Deirdre Shanagher

Funding information: Funded by Dept of Psychiatry, TCD

Project summary:

This will be a cross-sectional, on-line, anonymous survey of nursing home staff (nurses, health care assistants and activity coordinators) within nursing homes affiliated with Nursing Homes Ireland in Ireland (Survey 1). The same survey will be repeated after 4-6 months to assess longer-term outcomes (Survey 2). To strengthen the overall study design, we are hoping to be able to link data from the two surveys by asking participants to generate their own unique anonymous identification number.

Distinguishing strengths of our study are inclusion of various HCWs, from a range of healthcare environments, with varying degrees of risk exposure, follow-up and an “opt-in” ability to link the two surveys. Additionally, we will be able to compare results with a similar survey targeted at hospital staff. The survey comprises of demographic information and validated questionnaires which assess healthcare workers psychological distress and coping strategies.

We will use mixed-methods to collect and analyse quantitative and qualitative data.

 

OBJECTIVES

  1. To measure the prevalence and extent of symptoms of stress, anxiety and depression among nursing home staff in Ireland in different professions during the Covid-19 pandemic.
  2. To identify nursing home staff perceptions about the COVID-19 pandemic, moral injury, coping strategies and help-seeking behaviours.
  3. To examine the longer-term risk of persisting mental health issues in nursing home staff during the Covid-19 pandemic.

Outputs:

Outputs expected in March 2021-October 2021

Project website:https://www.tcd.ie/medicine/psychiatry/research/depression/coworker-nursing/

PUBLICATIONS & OTHER OUTPUTS

Design Interventions to Support Infection Prevention and Control (IPAC) in Long Term Care (LTC) Shared Work Environments.Ongoing

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Contact: Chantal Trudel https://carleton.ca/id/profile/chantal-trudel/

Host institution: Carleton University

Project team: Chantal Trudel, Amy Hsu, Kednapa Thavorn, Melissa Donskov, Steven Crawford, Carol Dueck, Lee Ann Welsh, Susan Braedley, Adrian Chan, Dennis Kao, Frank Knoefel, Zsofia Orosz, Heidi Sveistrup, Raymond Bruce Wallace.

Funding information: This project was funded by the Canadian Institutes of Health Research.

Project summary:

Infection prevention and control protocols (IPAC) focused on mitigating the risks of staff-to-staff pathogen transmission may be difficult to achieve in Long Term Care (LTC) homes due to the nature of shared work areas. Common design characteristics include centralized, compact and potentially crowded work/break areas; residential design details which may be challenging to clean and disinfect, coupled with the dynamic traffic flow of health professionals, other workers, residents and family. Using a human centred design process, we aim to support the resiliency of LTC homes by studying: how the design of staff work areas and associated patterns of use may be undermining IPAC; short and long term design interventions that may help reduce transmission risks; and the cost-effectiveness of our proposed design interventions. Through evidence-based design we hope to contribute to current pandemic efforts and inform the future design of LTC homes to support safer work conditions.

Outputs:

Through this work, we will:

  • identify key staff demographics (job role, gender, age, ethnicity), the nature of their job design, how job design is associated to using shared work spaces, potential overlaps with other staff members, as well as use of other shared respite (break areas) or interstitial areas (entrances, exits, elevators);
  • identify potential latent sources of staff exposure to COVID-19 in shared workspaces due to crowding, scheduling of staff cohorts using such spaces, and cross-traffic flows between staff cohorts;
  • visualize through drawings and diagrams real world examples of the current state of activity occurring in shared work spaces;
  • create models for alternative staffing areas and processes to mitigate risks associated with risk factors such as crowding, cross-traffic, cohorting, scheduling and PPE use;
  • create designs of new work areas with long term care workers to support more achievable adaptive behavioural measures to mitigate the risk of COVID-19 transmission and other respiratory infectious outbreaks;
  • support insight across disciplines on the intricacies involved in working safely in shared work areas to support evidence-based design and informed decision-making in future renovations and new builds in LTC; and
  • create a design guideline/tool which may help inform short-term and long-term design interventions for the LTC community.

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams

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

El impacto de la COVID-19 en los centros residenciales para personas mayores en Euskadi – The impact of COVID-19 in care homes for older people in the Basque Country (Spain)Ongoing

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Contact: Madalen Saizarbitoria

Host institution: Ararteko – Basque Ombudsman and SIIS – Servicio de Investigación e Información Social (SIIS – Social Information and Research Centre)

Project team: Joseba Zalakain, Madalen Saizarbitoria. Multilevel analyses were carried out in collaboration with Juan Merlo and Raquel Pérez (Social Epidemiology Unit of the Faculty of Medicine at Lund University).

Funding information: Partially funded by Ararteko (Basque Ombudsman)

Project summary:

This is a retrospective cohort study on the factors associated with COVID-19 infection and mortality in care homes for the elderly in the Basque Country (Spain). Data for the study was provided by the Basque Health Service, covering 298 of the 300 facilities in the region and 20,186 elderly people living in those care homes from 1 March 2020 to 31 October 2020. For each individual in the cohort, the following information was obtained:

  • Care home where the person was living
  • Date of birth and sex
  • COVID-19 test (Yes/no)
  • Date of first positive test for COVID-19
  • Date of death

Additionally, the following information was gathered from public social services registers for each LTC facility:

  • Ubication: Province, Integrated Health Organisation Area (IHOA) and Health Care Division Area (HCDA) where the facility is located.
  • Ownership (public, private non-profit, private for-profit)
  • Size (<25 beds, 26-70 beds, >70 beds)

A Multilevel Analysis of individual Heterogeneity and Discriminatory Accuracy (MAIHDA) was carried out following a three-step approach where three consecutive logistic regression models are built, for two separate dependent variables: positive COVID-19 test and all-cause mortality.

  • Step 1: a conventional single-level logistic regression was estimated for each dependent variables, including only the individual-level covariates age and sex. Post-estimation predicted probabilities are calculated for each individual and are used to calculate the AUC (Area Under the ROC Curve) for the model. The AUC is constructed by plotting the true positive fraction (TPF) (i.e., sensitivity) against the false positive fraction (FPF) (i.e., 1 ? specificity) for different binary classification thresholds of the predicted probabilities. The AUC measures the ability of the model to correctly classify individuals with or without the outcome (e.g., having a COVID-19 test positive or negative) as a function of individuals’ predicted probabilities. The AUC takes a value between 1 and 0.5 where 1 is perfect discrimination and 0.5 would be as equally as informative as flipping a coin (i.e., the covariates have no predictive power). The AUC of the Step 1 model quantifies the accuracy of using individual-level information alone for identifying individuals with the outcome.
  • Step 2: a general contextual effects model is built, expanding the Step 1 model from a conventional single-level logistic regression model to a multilevel logistic regression model with 4 levels: individual (level 1), LTC-facility (level 2), HCDA (level 3), IHOA (level 4). The general contextual effect is appraised using the estimated between-units variance (e.g., care homes variance) as this quantifies the variability in unobserved influences on the outcome (positive COVID-19 test and overall mortality) common to all individuals living in in the same care homes. We then refer the between-unit variance to the total variance in the model using two different measures of general contextual effects: (i) The Intraclass Correlation Coefficient (ICC); and (ii) The increment in the AUC in step 2 compared with the Step 1 (?AUC).
  • Step 3: we add the care home covariates to the model for estimating the specific OR for those contextual variables. We focused on measuring the association (ORs) between positive COVID-19 test and three variables, the province where the care home was placed, the type of ownership of the care home and the size of the facility. Step 3 also provides a way of understanding the mechanism behind the observed general contextual effects of the care homes. For this purpose, we calculated the proportional change in variance (PCV) defined as the proportion of the care home variance (which correspond with the total contextual variance) in Model 2 explained by adding specific contextual information (i.e., province and ownership variables) in Model 3.

In the models for overall mortality, positive COVID-19 test was included as a fixed effect in the Step 1 model. Additionally, in step 2, we include a random effect for the slope of the association between COVID-19 test and mortality, that is, we drop the assumption that the slope of this association is the same in all care homes. Therefore, the variance between the care homes becomes a function of the COVID-19 test variable and, consequently, this variance can be different for individuals with a positive COVID-19 test and individuals with a negative test. Accordingly, there also are two VPCs and two AUCs one for COVID-19 positive individuals and other for COVID-19 negative individuals.

 

Outputs:

The main output of this study will be an estimation of the amount of individual variance in the risk for a positive COVID-19 test (and in the risk of death) that is captured by contextual factors (the care home where the person lives and health area to which it belongs) as opposed to individual characteristics (age and sex). This will indicate the relevance of considering the specific care home where the person was living to explain the risk of infection with SARS-CoV-2 and the risk of death.

The models will also give information on the relative risk of death for COVID-19 positive versus non infected individuals living in care homes for the elderly in the Basque Country.

Finally, if significative general contextual effects are found, the models will provide an estimation of the associations between analysed care home characteristics (size, ownership, and province) and risk of infection or death, as well as the amount of total contextual variance that is explained by these factors.

Project website:

PUBLICATIONS & OTHER OUTPUTS

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

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

Host institution: University of East Anglia

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

Project 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:

2021

Project website: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 https://corona-older.com/2020/06/09/an-emergency-strategy-for-managing-covid-19-in-care-homes-in-lmics-the-ciat-framework-version-1/

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

Enhancing the Lives of Older Canadians in Long Term Care in NewfoundlandOngoing

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Contact: Shree Mulay https://www.med.mun.ca/Medicine/Faculty/Mulay,-Shree.aspx

Host institution: Memorial University of Newfoundland and Labrador

Project team: Shree Mulay, Shabnam Asghari, Kris Aubrey-Bassler, Jill Allison, Stephen Bornstein, Maisam Najafizada, Patrick Parfrey, Veerabhadra Gadag, Robert Wilson, Judy O’Keefe, Catherine Street, Melvin Layden Suzanne Brake, Kelly Heisz, Veronica Hutchings

Funding information: This project was funded by the Canadian Institutes of Health Research.

Project summary:

In Newfoundland and Labrador (NL), Eastern Health Region serves 65% of the NL population; the 16 Long Term Care facilities (LTCs), in its jurisdiction, identified and addressed many initial challenges through development of policies and practices. However, evaluation of the effectiveness of these measures to improve the care for seniors is essential. Our research focuses on?LTC residents and family-centered care interventions. To support the intervention, with the potential to change the way older adult care is provided in the province. Our aims include accelerating the availability of high-quality evidence to inform Canada’s rapid response to the COVID-19 pandemic; iterative testing to enhance local collaborative efforts and help reorient the existing research infrastructure; and providing evidence on older adults’ care for decision-making and planning throughout Canada. The interventions will include: e-visits and electronic messaging; virtual mental health support; residents’ integrated COVID and non-COVID care plans including virtual care; and infection control and prevention training among LTC leadership. Our findings will be relevant to all Canadian provinces with a population living in rural communities and small towns, and other settings that have similarities to those LTC homes in this province.

Outputs:

The research will be completed by December 2021 and expected outputs are:

  • Accelerate availability of high-quality evidence regarding COVID -19 management in LTCs;
  • Inform NL’s rapid response to COVID 19 in subsequent waves;
  • Enhance local collaborative efforts to reorient existing research infrastructure;
  • Provide evidence on seniors’ care for decision-making and planning within and across Canada;
  • Through knowledge synthesis bring the voices of the elders to the policy-making table;
  • Relevant to other rural communities and small towns in Canada with populations similar to NL.

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams

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

Estudio estadístico relativo al impacto de la mortalidad COVID-19 en las residencias de personas mayores (Statistical Analysis of the impact of COVID-19 in nursing homes for older people)Ongoing

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Contact: Madalen Saizarbitoria

Host institution: SIIS – Servicio de Investigación e Información Social (SIIS – Social Information and Research Centre)

Project team: Joseba Zalakain, Madalen Saizarbitoria, Ainhoa Alustiza

Funding information: The study is fully funded by the Basque Government’s Department of Equity, Justice and Social Policy under contract nº 39/2021-ES

Project summary:

This study aims to measure the impact of COVID-19 on Basque nursing homes in terms of resident mortality, and to identify nursing home factors associated with risk of death from COVID-19, as well as nursing-home profiles that have been most impacted by COVID-19.

The study will cover the period from March 2020 to June 2021 and will involve three different types of analysis:

  • Estimation of excess mortality in the nursing home population and the general older population in the Basque Country. The aim of this part of the study will be to measure the “net” impact of COVID-19 on older people’s mortality, by measuring excess mortality and the fraction of that excess mortality that is directly attributable to COVID-19, and by comparing the nursing home population with community dwelling older adults. The analysis will also look into the temporal distribution of excess mortality in the nursing home population, to estimate de differential impact of the pandemic on the first and second waves, and the post-vaccination period.
  • Analysis of nursing home level variance on overall and COVID-19 resident mortality, and identification of nursing home factors associated with resident deaths. Individual level data will be obtained from the Basque Health Service’s information system (Osakidetza) on SARS-CoV-2 infection and registered deaths, covering the whole nursing home population from March 2020 to June 2021. Multilevel logistic regression models will be applied to this data to estimate the proportion of individual variance on risk of mortality that lies at the nursing home level (as opposed to the individual level) and, therefore, determine how relevant nursing home characteristics or prevention measures can be in explaining risk of death for infected and non-infected service users. Depending on the significance of these general contextual effects, the association between specific nursing home characteristics such as size, ownership, staff-to-resident ratio or unitary cost and risk of mortality will be estimated.
  • Typology of nursing homes in terms of mortality impact. Cluster analysis will be employed to identify characteristics of nursing home facilities that make them more vulnerable in terms of COVID-19 mortality. Factors significantly associated with mortality in the previous multilevel logistic regression models will be used to identify relevant nursing home clusters.

Outputs:

The main outputs of the study will be:

  • Estimation of excess mortality in the Basque older population and the population living in nursing homes for the elderly in the period March 2020 to June 2021
  • Estimation of the fraction of excess mortality that is directly attributable to COVID-19
  • Estimation of individual level variability in overall and COVID-19 mortality that lies at the nursing home facility level.
  • Estimation of the associations between nursing home characteristics and risk of mortality (size, ownership, resident-to-staff ratio, unitary cost, etc.)
  • Typology of nursing homes and identification of clusters that are most vulnerable in terms of COVID-19 mortality.

Project website:

PUBLICATIONS & OTHER OUTPUTS

EU-COGER: Pan-European Study on Functional and Medical Recovery and Geriatric Rehabilitation Services of Post-COVID-19 PatientOngoing

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Contact: Miriam Haaksma

Host institution: Leiden University Medical Center

Project team: Monique Caljouw PhD, Adam Gordon, MBChB PhD, Stefan Grund MD MaHM, Miriam Haaksma PhD, Jos Schols MD PhD, Lisa van Tol MSc, Wilco P Achterberg MD PhD, COGER-Study Subgroup of the EuGMS-SIG on GR

Funding information:

Project summary:

The COGER study is collecting data to gain insight into the course of functional and medical recovery in older people affected by COVID-19 participating in rehabilitation across Europe.
The COGER study, designed by members of the Special Interest Group for Geriatric Rehabilitation of the European Geriatric Medical Society (EuGMS), study aims to:
1. Explore the course of activities of daily living (ADL) recovery and influencing factors
2. Describe other outcomes after geriatric rehabilitation in post-COVID-19 patients
3. Describe geriatric rehabilitation services provided to post COVID-19 patients across Europe.

The study group are presently looking for rehabilitation services to volunteer to support the work. Please contact us if you are interested in doing so.

Outputs:
  • Insight into recovery of post-COVID patients during and after admission to geriatric rehabilitation. Functioning and quality of life will be our main outcomes.
  • Insight into the contend of COVID rehabilitation care in various European countries: which treatments are given and which professionals are involved? What works, and what does not?

Project website:https://www.lumc.nl/org/unc-zh/English/Research/EU_COGER_ENGLISHpage/

PUBLICATIONS & OTHER OUTPUTS

Grund-et-al.-EU-COGER-study-protocol.pdf (317.2 KB)

Grund-et-al-COVID-rehabilitation-paradox.pdf (107.2 KB)

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

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

Host institution: University of East Anglia

Project 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 information: Healthy Longevity Global Grand Challenge (UKRI).

Project 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.

Outputs:

When are 2021

Project website:http://www.redmayorlaplata.com/

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

Family Involvement and Unpaid Caregiving in Long-Term Care HomesOngoing

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Contact: Amy Hsu

Host institution: Bruyère Research Institute

Project team: Amy T. Hsu (PI), Alixe Ménard (co-lead), Shereen Hussain, Annie Sun and Anna Cooper-Reed

Funding information:

Project summary:

The Family Involvement and Unpaid Caregiving in Long-Term Care (LTC) project provides insight pertaining to the various personal care tasks performed by caregivers during their visits to residents in LTC homes and how much time it typically takes unpaid caregivers to perform these tasks. The aim of this study is to develop a better understanding on family members’ involvement in direct care in order to inform and facilitate a strong working relationship between care providers and family members who wish to be involved in the care of their loved one.

Why is this work important?

One of the first challenges identified during the COVID-19 pandemic is the lack of a proper definition for what constitutes an essential visitor in LTC homes. This challenge has led to the realization that unpaid caregivers, their care contributions as well as the time they dedicate to the care of their loved one in a LTC home is not well understood.

An appreciation for the true extent and nature of the family’s involvement within LTC could promote efforts on the part of LTC homes to ensure families feel supported and not overwhelmed by their care contributions. Results from this study can aid the design of programs of support for caregivers in LTC while simultaneously forging better relationships between LTC staff and these care providers.

Research questions

Our primary research questions are:

  • Who provides unpaid personal care to residents in LTC?
  • How often do these individuals provide unpaid personal care to residents in LTC?
  • What are the tasks that these individuals perform in providing unpaid care to residents in LTC?
  • How much time do these individuals spend on these tasks?

Our approach

We developed a cross-sectional survey that was administered to 224 unpaid caregivers of residents in Ontario’s LTC homes to capture the characteristics of unpaid caregivers and the care task(s) these caregivers were involved in prior to the COVID-19 pandemic.

Outputs:

The study started in April 2021 and aims to be completed by September 2021.

Given the importance of unpaid caregivers in LTC and their contributions to the wellbeing of residents, we will seek to ensure relevant emerging findings are available to the public, to LTC staff and to provincial decision-makers in a timely manner. We will seek to publish a range of outputs such as:

  • Journal articles;
  • Research evidences summaries/blogs.

We aim to publish the first analytical report in the fall of 2021. The report will focus on the frequency of visits as well as the range of personal care tasks that unpaid caregivers might perform in their visits to residents and the time it usually takes to perform these tasks.

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

Finding the Right Balance: Implementing Family Presence Policies in Ontario LTC HomesOngoing

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Contact: Samir Sinha http://ihpme.utoronto.ca/faculty/samir-k-sinha/

Host institution: Ryerson University

Project team: Samir Sinha, Nathan Stall, Michael Hillmer, Lisa Levin, Susan Mills, Devora Greenspon, Sid Feldman, Rhonda Collins, Noah Ivers, Gary Naglie, Paula Rochon, Ted Cohen, Scott Ovenden, Jennie Johnstone, Kieran Quinn, Dee Lender, Samantha Peck, Nancy Cooper, Amy Coupal, Cameron Feil, Natalie Iciaszczyk

Funding information: This project was funded by the following: CIHR Institute of Health Services and Policy Research CIHR Institute of Gender and Health CIHR Institute of Infection and Immunity Centre for Aging and Brain Health Innovation

Project summary:

The Finding the Right Balance: Implementing Family Presence in Ontario LTC homes is a multiphase project that will target LTC home residents and family caregivers across Ontario. The research settings include project multiple partner LTC homes in Ontario. The findings will be generalizable to LTC homes and congregate care facilities across Canada and internationally. The objectives of the project are threefold:

  1. Update provincial data collection tools to capture metrics on caregiver and visitor access to LTC homes and LTC resident absences and their relationship with COVID-19 outbreaks in LTC homes.
  2. Analyze provincial quantitative data on caregiver and visitor access and qualitative LTC home data on the barriers and facilitators to implementing family presence.
  3. Execute and study an implementation strategy at our partner LTC homes and create a learning collaborative on implementing family presence in LTC homes across the province.

Outputs:

The research began in November 2020 and will be completed by October 2021. Currently, the expected outputs are a published research paper on the experiences of implementing best practice family presence guidelines in LTC. Additionally, much of the work will inform white papers by the National Institute on Aging (NIA).

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams;%20https://static1.squarespace.com/static/5c2fa7b03917eed9b5a436d8/t/5f0f2678f205304ab1e695be/1594828410565/%27NIA+LTC+Visitor+Guidance+Document.pdf;%20https://static1.squarespace.com/static/5c2fa7b03917eed9b5a436d8/t/5f6ca4e9a0cbe5120880c889/1600955625522/NIA%2BIron%2BRing%2BGuidance%2BDocument%2BSeptember2020.pdf

PUBLICATIONS & OTHER OUTPUTS

Forgotten key workers: policy narratives in migrant live-in careOngoing

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Contact: Michael Leiblfinger http://decent-care-work.net/

Host institution: Johannes Kepler University Linz (AT)

Project team: Michael Leiblfinger, Veronika Prieler

Funding information: Michael Leiblfinger and Veronika Prieler are part of the trinational research project Decent Care Work? Transnational Home Care Arrangements (http://decentcarework.net) with the Austrian part funded by the Austrian Science Fund (FWF I 3145 G-29) and chaired by Brigitte Aulenbacher.

Project summary:

Over the last few decades, live-in care has become an important pillar of long-term care regimes in familialistic countries like Austria. Commuting live-in care workers, typically women from Central and Eastern Europe, help fill the care gaps resulting from a decline in familial care. Closed borders and other pandemic-related restrictions brought the circulation of care workers, whose rotas typically range from two to four weeks, to a halt. The government scrambled and narratives of an endangered live-in care model and of the ‘systematic importance’ of its carers brought upon a variety of policy responses: to foster care workers’ extension of rotas, a federally funded, tax-free bonus was implemented for live-in carers prolonging their stays for at least four weeks. Additionally, the government initiated negotiations with neighbouring countries in hopes of creating ‘care corridors’ for the suddenly essential live-in care workers. Charter flights and special trains were organised to ensure the supply of live-in carers until borders re-opened. These measures along with the government’s announcement to provide 100 million euros to the social care sector – including live-in care, which received considerable media attention – show the pressure policy actors faced.
The project analyses how live-in care was affected by the pandemic and how related policy responses were shaped by powerful narratives. It asks how different actors including local and federal governments, interest groups, and grassroots organisations interpreted the pandemic-related challenges for live-in care, what problems they defined and how they proposed to solve them, and whose demands they addressed. Preliminary results indicate that while live-in carers were deemed key workers and essential for the long-term care system, the responses deepened the inequalities and dependencies already existing in transnational care arrangements. This links to the structural inequalities and power imbalances that mark live-in care in general. Empirically, the project draws on a media analyses of live-in care in Austria from March 2020 to February 2021. This dataset of over 500 reports is supplemented by governmental documents, relevant laws, and official guidelines as well as six interviews with policy actors in the field. The analyses will shed insights into the narrative of the ‘systematic importance’ of live-in care and its workers and how policy choices were argued and / or defended, focusing on the roles various actors took on in their own or other’s narration.

Outputs:

Currently, a paper and presentations:

Forgotten key workers: Why migrant domestic carers deserve greater support. Post on the EUROPP – European Politics and Policy blog run by the London School of Economics and Political Science https://blogs.lse.ac.uk/europpblog/2021/03/05/forgotten-key-workers-why-migrant-domestic-carers-deserve-greater-support/

Project website:

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

Identification of underlying factors influencing the immune response to SARS-CoV-2 among workers and residents in long-term care homes: a multi-province studyOngoing

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Contact: Dr. Amy Hsu https://www.bruyere.org/en/blog/pan-canadian-studies-investigate-covid19-long-term-care?ly=4

Host institution: The Bruyère Research Institute

Project team: Principal Investigators: Dr. Amy Hsu and Dr. Marc-André Langlois Co-Investigators: Dr. Kimberlyn McGrail, Dr. Erin Strumpf, Dr. Sara Allin, Dr. Julian Little, Dr. Kumanan Wilson, Dr. Doug Manuel, Dr. Peter Tanuseputro, Dr. Kednapa Thavorn, and Dr. Chantal Trudel. Core Staff: Dr. Daniel El Kodsi, Kerry Moloney, Zaina Kahiel, Leora Simon, Seles Yung, Anna Cooper Reed, Maya Murmann, and Alixe Ménard. Design and Tech: Shane Kirkham, Samantha Astles, and Cameron Bell. Clinical Research and Education: Kat Denize, Scott Donald, Kathryn May, Carrie Heer, Helen Niezgoda, Shelly Dowling, and Dr. Corey Arnold.

Funding information: The C19 Immunity study is funded by the COVID-19 Immunity Task Force (CITF). Investigators from the Bruyère Research Institute and the University of Ottawa have been awarded $3.5 million in funding for their cross-provincial study

Project summary:

Long-term care homes across the world have been gravely impacted by COVID-19. In Canada, approximately 60% of the deaths related to COVID-19 were in long-term care homes. Residents in long-term care homes are particularly vulnerable to COVID-19, given their advanced age, reduced immune system capacity, and multiple underlying health conditions. Individuals who work in long-term care homes also face an increased risk of exposure to COVID-19.

?The Government of Canada, via its COVID-19 Immunity Task Force (CITF), has funded several studies – spanning Halifax to Vancouver – to investigate various aspects of immunity and people’s response to vaccines within long-term care homes.

This project includes long-term care home residents and workers in Québec, Ontario and British Columbia.

?The research team is hoping to collect dried blood spot samples from nearly 8,000 long-term care residents and workers to look for the presence of antibodies against COVID-19. Findings from this research will show how various immunity factors, such as antibodies, react to COVID-19 and to the COVID-19 vaccines.

Outputs:

The goal of this study is to build a better understanding of how widespread COVID-19 is in Canada among our most vulnerable and high-risk populations, as well as the effectiveness and safety of currently approved COVID-19 vaccines:

  • We will study the immune response of 2,500 workers and 3,500 residents in long-term care facilities across Ontario, Quebec, and British Columbia and will do vaccine surveillance.
  • Our goal is to gain insight into how various immunity factors, such as antibodies, react to COVID-19 and/or to vaccines. We will compare the immune response in individuals who previously had COVID-19, those who got vaccinated, those who have not been infected, and those who have not been vaccinated.
  • The team will then link the information found from analyzing the blood specimens to participants’ healthcare data to follow individuals over time, including after an infection or after vaccination.
  • We will track the occurrence of adverse events and serious illness over time. More specifically, we will be closely analyzing the subgroup of antibodies, called virus neutralizing antibodies, that protect against new infections.
  • The team will also use an app called CANImmunize, which is a pan-Canadian digital immunization tracking application developed by study co-applicant, Dr. Kumanan Wilson. The research team has had the app modified so that long-term care facilities can upload vaccination information for many of their residents and staff at once. This will allow long-term care facilities to track the vaccination records for staff and residents in their facilities. It will also allow each participant to have a record of which vaccine they received, when, and how long it was between their first and second dose.

Project website:https://www.c19immunitystudy.ca

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 on Nursing Assistants and Residents in Nursing HomesOngoing

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Contact: Verena Cimarolli https://www.ltsscenter.org/

Host institution: LeadingAge LTSS Center @UMass Boston

Project team: Verena Cimarolli Robyn Stone Natasha Bryant

Funding information: Patrick and Catherine Weldon Donaghue Medical Research Foundation.

Project summary:

Nursing homes (NHs) are currently facing an unprecedented crisis due to the rapid spread of COVID-19. Not only are NH residents/patients at risk for infection and death, but also are Certified Nursing Assistants (CNAs) who are on the frontlines providing hands-on care. Studies are needed to understand how the COVID-19 pandemic affects CNAs’ work-related well-being, job satisfaction and intention to stay on the job as well as the impact and challenges that COVID-19 has posed to providing quality care during this pandemic. The overall purpose of our proposed 18-month cross-sectional study is to investigate the impact of COVID-19 on CNAs and NH residents/patients when taking into account employers’ efforts to train and prepare CNAs for their work during COVID-19. Using data from a multi-site employee engagement and management system, and NH COVID-19-related data published by CMS, we will answer the following research questions: [1] what are levels of CNAs’ perceived preparedness and quality of employer communication around COVID-19? [2] what stresses and specific challenges do CNAs experience during this crisis? [3] how are perceived preparedness and quality of employer communication around COVID-19, and CNAs’ stresses/challenges experienced during COVID-19 associated with CNAs’ work-related well-being, job satisfaction, and intent to leave the job?, and [4] what facility-level and CNA work-related characteristics are associated with resident/patient COVID-19-related health outcomes? Insights from this study will help NHs to plan their response to the current crisis and future pandemics or other public health-related crises.

Outputs:

Peer-reviewed publications and research brief late 2021/early 2022

Project website:

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

Impact of COVID-19 public health measures on the life and wellbeing and access to care and support of people living with dementia and care partners in AustraliaOngoing

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Contact: Yun-Hee Jeon https://www.sydney.edu.au/medicine-health/about/our-people/academic-staff/yun-hee-jeon.html

Host institution: The University of Sydney

Project team: Yun-Hee Jeon, Mirim Shin, Donna Waters, Elizabeth Beattie, Henry Brodaty, Tony Hobbs, Kaele Stokes, Jason Burton, Sue Kurrle, Fran McInery, Jane Thompson, and Kimberley Bassett.

Funding information: None

Project summary:

The aims of this study are, from the perspectives of those with the lived experience, to examine the impact of COVID-19
public health measures on the life and wellbeing and access to care and support of people living with dementia and their care partners
(family, friends and other informal carers); and identify key issues and challenges as well as key lessons in terms of what
worked well, what did not, what was helpful and what was not.

METHODS
Design: A repeated cross-sectional survey of people living with dementia and current care partners, complemented by a
follow-up qualitative interview

Participants: People living with dementia and carer partners (families/friends who have primary care responsibility) in Australia

Recruitment: Volunteers from StepUp for Dementia Research and StepUp Champion Organisations (aged care providers and dementia peak bodies).

Data collection: Online and Telephone survey using REDCap (Time 1 in June-July 2020 & Time 2 in mid 2021, and qualitative interview (in August-September 2020).

Outputs:

The study is ongoing (Time 2 survey to be conducted April-May 2021)

Initial findings have been reported in the Dementia Australia discussion paper: One day the support was gone: The mental health impact of COVID-19 on people living with dementia, their families and carers. https://www.dementia.org.au/sites/default/files/2020-11/PFOD-Discussion-Paper-Nov-2020-ver1.pdf

Project website:https://www.stepupfordementiaresearch.org.au/category/in-the-news/

PUBLICATIONS & OTHER OUTPUTS

Impact of the Dementia Isolation Toolkit on Effective, Safe and Compassionate Isolation of Residents, and the Moral Distress amongst Staff in Long Term CareOngoing

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Contact: Andrea Iaboni https://www.uhnresearch.ca/researcher/andrea-iaboni

Host institution: Toronto Rehab, University Health Network

Project team: Andrea Iaboni, Alisa Grigorovich, Josephine McMurray, Arlene Astell, Alastair Flint, Kristina Kokorelias, Hannah Quirt, Kevin Rodriguez, Mario Tsokas

Funding information: This project was funded by the following: CIHR Institute of Infection and Immunity CIHR Institute of Aging Centre for Aging and Brain Health Innovation

Project summary:

The Dementia Isolation Toolkit was developed to provide evidence-informed guidance to support infection prevention and control measures that are consistent with person-centered care within long term care homes (LTCHs) during the pandemic. This project is a four-phase mixed-methods, research study evaluating the impact of the DIT intervention on outcomes related to 1) achieving safe, effective, and compassionate isolation of residents and 2) levels of moral distress amongst LTCH staff in three LTCHs situated in rural and city settings. The effectiveness of the DIT and the processes developed for its implementation will also be explored through developmental evaluation. Our approach includes multiple rapid quantitative (e.g., administrative/clinical surveys) and qualitative (e.g., interviews) analyses with up to 130 LTCH staff and family caregiver participants. We will directly engage these same knowledge users in the implementation process as part of the developmental evaluation, to increase the potential impact of the DIT intervention.

Outputs:

The research will be completed by December 2021 and expected outputs are:

  • The development of evidence-informed implementation approaches and materials for wide-spread distribution through our website.
  • We will publish articles in open-access journals relevant to long-term care and implementation science and share our findings on our website, on social media and through conference presentations.

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams

PUBLICATIONS & OTHER OUTPUTS

Implementation and evaluation of a mortality-risk prognostication tool (RESPECT-LTC) to enhance goals of care discussion in long-term care homesOngoing

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Contact: Amy Hsu https://bruyere.uniweb.network/members/84/profile

Host institution: Bruyere Research Institute

Project team: Amy Hsu, Justin Presseau, Benoit Robert, Douglas Manuel, Peter Tanuseputro, Melissa Donskov, Kednapa Thavorn, Zsofia Orosz, Celeste Fung, Amit Arya, Claudia Hampel, Dawn Stacey, Aleksandra Grzeszczuk, Andre Carrington, Kanwal Abdul Hai, Lysanne Lessard

Funding information: This project was funded by the Canadian Institutes of Health Research.

Project summary:

Palliative care is commonly misunderstood as only being relevant for people who are actively dying and in the final weeks or days of life. However, the relief of suffering through the provision of holistic and compassionate care is an essential component of care for all patients with a life-threatening illness. Among newly-admitted residents to long-term care (LTC) homes, where median life expectancy is just 18 months, most receiving care in this setting have limited life expectancy and can benefit from palliative care.

In this project, we will adopt an implementation science approach to evaluate the use of the Risk Evaluation for Support: Predictions for Elder-life in the Community Tool in LTC (RESPECT–LTC) to support their ongoing efforts to embed palliative approaches to care in their processes and culture. RESPECT–LTC is a mortality-risk communication tool that accurately predicts an older person’s six-month mortality risk as well as life expectancy to inform decision-making regarding the initiation of palliative and end-of-life care.

Outputs:

The research will be completed by December 2021 and expected outputs are:

  • Qualitative evidence on the acceptability to the use prognostic tools to aid decision-making around palliative care needs in long-term care
  • Identified barriers to the implementation of prognostic tools to support goals of care discussions within long-term care
  • The number of residents in long-term care homes who had: (a) a risk assessment performed using RESPECT–LTC (out of all the residents at each home); (b) a care conference or goals of care conversation in which RESPECT–LTC results were discussed, and the care decisions that precipitated from the discussion (e.g., on hospital transfers, resuscitation, mechanical ventilation, and preferred location of death); and (c) received palliative care over a six-month period following the implementation of RESPECT–LTC.
  • Healthcare outcomes associated with the use of RESPECT–LTC, such as a reduction in potentially burdensome transitions (i.e., frequent or unnecessary transfers to the emergency room and hospital), aggressive care at the end of life (e.g., intensive care unit [ICU] admissions, resuscitation, mechanical ventilation), health care cost, or misalignment between expressed preference for and recorded location of death among residents who died within one year of our implementation.
  • A set of recommended clinical pathways based on prognostic information and risk groups generated from RESPECT–LTC to support equitable access to care for residents near the end of life.

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams;%20https://www.projectbiglife.ca/elder-life-calculator

PUBLICATIONS & OTHER OUTPUTS

Implementation of policies that support and hinder families as partners in care during COVID-19 pandemicOngoing

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Contact: Janice Keefe https://www.msvu.ca/academics/bachelor-of-arts-ba/family-studies/meet-our-faculty/janice-keefe/?gclid=Cj0KCQiAzsz-BRCCARIsANotFgPG0EtAsG4tS9tCy_lbgIhah9eYeXVvF0fVXDMBomZNQj4_wT7LQncaAjJxEALw_wcB

Host institution: Mount Saint Vincent University

Project team: Janice Keefe, Melissa Andrew, Stephanie Chamberlain, Mary Jean Hande, Tamara Krawchenko, Grace Warner, Lori Weeks, Andrew MacDougall, Kathleen Norman, Shelley Connick, Debra Boudreau, Cheryl Deveaux, Gayle Lamont, Vonn Manahan, Alejandro O’Campo, Roberta Bishop, Heather Fifield, Ruth Murphy.

Funding information: This project was funded by the following: CIHR Institute of Infection and Immunity CIHR Institute of Health Services and Policy Research CIHR Institute of Aging

Project summary:

The study involves partnerships with six publiclyfunded long-term care homes in Nova Scotia and Prince Edward Island implementing family support visitations, in line with their province’s public health directives, to increase family presence during the COVID-19 pandemic. Guided by the Consolidated Framework for Implementation Research (CFIR), multiple methods will be employed to assess multilevel implementation contexts of support visitations. We will also consult with key informants in select other jurisdictions to draw upon their lessons learned implementing similar family visitation programs. Our objectives are:

  1. To explore and identify the contextual attributes of successful implementation processes.
  2. To understand facilitators and barriers of successful implementation.
  3. To understand how family has been engaged/represented in the implementation process.
  4. To assess the outcomes and impacts of support visitations on residents, family and staff.
  5. To obtain insights into implementation and sustainability from other jurisdictions.

Outputs:

The research will be completed by December 2021 and expected outputs are:

  • A webinar with the NS and PEI LTC and public health sectors.
  • Short briefs to convey key messages from study findings.
  • Publications in peer reviewed journals and presentations at academic conferences.
  • Findings will be shared with a broader audience through meetings of the Implementation Science Teams and the LTC+: Acting on Pandemic Learning Together Program.
  • Key messages and deliverables will be promoted via social media networks of the Nova Scotia Centre on Aging, Mount Saint Vincent University.

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams

PUBLICATIONS & OTHER OUTPUTS

Implementation of the “one high risk site only” policy--its impact on staff, family and LTC residentsOngoing

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Contact: Joanie Sims-Gould https://pwias.ubc.ca/profile/joanie-sims-gould

Host institution: University of British Columbia

Project team: Our team includes early (Havaei – co-PI, Hung), mid-career (Sims-Gould - PI) and established (Macphee, Phinney, Robinovitch, McKay) researchers, and trainees (Franke, Staempfli) together with committed and passionate LTC administrators (Keselman, Lee, Kirk, Strath), senior health authority executives (Mak, Sorensen) and Min of Health (Neilson) partners and KU. Two collaborators offer expertise in implementation measures (Lewis) and national LTC policy (Tamblyn-Watts).

Funding information: This project was funded by the Michael Smith Foundation for Health Research.

Project summary:

It is essential that we stop the spread of the COVID-19 virus in long-term care. The Public Health Agency of Canada instituted evidence-based, rapid redesign and resource redeployment practices to protect the health and ensure the safety of staff, residents and their families. Measures included strict visitation and “one high risk site” staffing policies, prohibiting LTC staff from employment in more than one facility. Our mixed methods, exploratory study will focus on implementation and impact of the “one high risk site” staffing policy on staff, family and residents in 4 LTC facilities in 2 British Columbia health authorities. We are guided by the Consolidated Framework for Implementation Research (CFIR).?

Outputs:
  • Short-term outcomes: Knowledge users are positioned to immediately translate evidence into practice to inform LTC improvements at the facility level. We will share results through the LTC+ Acting on Pandemic Learning Together Initiative. Facilities that signed up to participate in this initiative have immediate access to results of our study across jurisdictions.
  • Long-term outcomes: Lessons learned about positive and negative consequences of the “one high risk site” policy can be applied in other jurisdictions. We will provide a roadmap to effectively implement future policies in response to COVID-19 in LTC settings. Partnerships we develop foster future collaborations and capacity building among academics and the LTC sector.

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams

PUBLICATIONS & OTHER OUTPUTS

Implementation of virtual P.I.E.C.E.S™ for resident care planning with family to build and sustain team collaboration and resilience for the workforce in LTC during COVID-19 and future outbreaksOngoing

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Contact: Denise Connelly https://www.uwo.ca/fhs/pt/about/faculty/connelly_d.html

Host institution: Western University

Project team: Denise Connelly, Lilian Hung, Anna Garnett, Shannon Snelgrove, Lori Schindel Martin, Heather Martin, Nancy Snobelen, Samantha Salatino, Marie-Lee Yous, Kenneth Le Clair, Robert Maunder, Michael Nicin

Funding information: This project was funded by the Canadian Institutes of Health Research.

Project summary:

In this project, residents and families, Registered Practical Nurses (RPNs) and other health professionals, and managers will implement virtual P.I.E.C.E.S.™, for person-centred team-based care planning for residents of LTC. This explanatory mixed method study will gather information from these people using online surveys, focus groups, and individual interviews, including RPNs, family care partners and cognitively-able residents. Working together in partnership, researchers at Western University and UBC, Copper Terrace and Vision’74 LTC homes in SW Ontario, the Registered Practical Nurses Association of Ontario (WeRPN), PIECES Canada, Canadian Gerontological Nurses Association and SPOR-OSSU aim: to improve family and resident experience as essential care partners; build resilience in RPNs as team leaders to support the workforce in LTC; improve LTC staff and leader preparedness to mitigate impacts of future COVID-19 outbreak; accelerate available high-quality, real-time, actionable research evidence; and develop a plan to adapt, sustain, and scale the proposed intervention across LTC homes.

Outputs:
  • Improvement in resident health outcomes effective PIECES-guided team-based care planning will target more effective non-pharmacological and pharmacological solutions for managing responsive behaviours exacerbated by social isolation and COVID-19 protocols.
  • Improvement in family experience as essential care partnerseffective solutions and improved communication between the LTC home and family during future COVID- 19/flu outbreak restrictions.
  • Invaluable insights and compelling evidence about enablers and challenges to implementation and sustainability of the virtual PIECES intervention data inherent for scaling up with other LTC home partners.
  • Patient engagement and team building knowledge and skills – to solidify shared goals of trusting relationships and meaningful engagement of families and residents team collaboration and better resident health outcomes
  • Building resilience in RPNs as team leaders to support the workforce in LTC – recognizing RPN knowledge and skills and supporting RPNs as team leaders to champion virtual integrated care planning to mobilize the whole team including residents and family care partners. Staff RPNs will feel empowered, supported through team collaboration, more competent and confident in person-centered care, enhanced knowledge and skills to manage work responsibilities in crises, and heightened personal, professional and workplace resilience.
  • Improved efficiency and effectiveness of team based care coordination, communication, and shared values. PIECES is an effective tool for fostering positive continuous improvement by focusing on strengths, enhanced team collaboration, and sustaining care practices for LTC residents
  • Improving LTC staff and leader preparedness to mitigate impacts of future COVID-19 outbreak. Virtual PIECES huddles will provide valued engagement of families, residents, and staff in a structure to withstand future outbreak restrictions and mitigate isolation for residents.
  • Acceleration of available high-quality, real-time, actionable research evidence. The collaborative partnerships among residents, families, frontline staff, decisionmakers, academics, research trainees, and professional leaders will build research capacity, share lessons learned, package data for knowledge dissemination, fine-tune the new virtual huddle intervention, inform practice and a knowledge dissemination strategy, during and beyond the pandemic to develop a rapid learning health system.
  • Plan for adapting, sustaining, and scaling the proposed intervention On-site project champions from each partner LTC home will lead, inform and provide ongoing coaching for implementation of the virtual integrated care planning intervention in their LTC home. The LTC homes, will share about the utility and effectiveness of virtual PIECES. with relevant knowledge users within and external to their corporations. Positive partnerships and stakeholder engagement will build research capacity within the LTC homes and facilitate interdisciplinary collaborations among this research team and LTC homes in LTC+.
  • Effective implementation of new evidence-informed practices – guided by the Consolidated Framework for Implementation Research (CFIR) and Practical, Robust, Implementation, and Sustainability Model (PRISM), an extension of the RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) frameworks, the LTC homes will build capacity for effective implementation, sustainability and spread of new knowledge, skills and judgment that will positively impact the care of their residents and families.

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams;%20https://pieceslearning.com/;%20https://www.werpn.com/

PUBLICATIONS & OTHER OUTPUTS

Implementing and Scaling Up the Long-Term Care Palliative Toolkit During COVIDOngoing

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Contact: Dr. Sharon Kaasalainen https://nursing.mcmaster.ca/faculty/bio/sharon-kaasalainen

Host institution: McMaster University

Project team: Sharon Kaasalainen; Maureen Markle-Reid; Paulette Hunter; Pamela Durepos; Rose McCloskey; Sarah Neil-Sztramko; Maureen Dobbins; Lorraine Venturato; Tamara Sussman; Sheila Boamah; Lynn McCleary; Samantha Peck; Sharon Baxter; Genevieve Thompson; Abigail Wickson-Griffiths; Patricia Bromwich; Laurie Kennedy; Jayna Holyrod-Leduc; Amit Arya; Henry Siu; Cindy Donovan; Jennifer Banks; Deanna Miller

Funding information: This project was funded by the following: CIHR Institute of Aging CIHR Institute of Circulatory and Respiratory Health Centre for Aging and Brain Health Innovation New Brunswick Health Research Foundation Saskatchewan Health Research Foundation

Project summary:

Residents and families are often faced with making critical and emotional end-of-life decisions without any preparatory discussions. This results in stress and conflict. A long-term care (LTC) palliative toolkit has been developed to address the immediate LTC homes needs in response to COVID-19. The LTC toolkit includes tools and practices that support: (a) the engagement of residents and families across disease trajectories, (b) workforce capacity development and the implementation of supports to reduce stress and improve psychological health, (c) the development of organizational structures and processes embedded in the LTC home to promote a palliative approach to care. Our mixed methods project will include: (1) situational & stakeholder analysis with LTC staff, residents and families; (2) toolkit Implementation at one LTC home in New Brunswick, Ontario and Saskatchewan; (3) staff focus groups and interviews to assess implementation perceptions & suggestions for improvement.

Outputs:

The research will be completed by December 2021 and expected outputs are:

  • A scale-up assessment of the new LTC palliative toolkit conducted in three provinces (Ontario, Saskatchewan and New Brunswick)
  • Identification of ways to adapt the LTC palliative toolkit for diverse regions and contexts
  • Documented lessons learned from implementation in diverse settings
  • Evaluation of the implementation and effectiveness of the toolkit in participating LTC homes during COVID-19

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams

PUBLICATIONS & OTHER OUTPUTS

Improved Testing for COVID-19 in Skilled Nursing Facilities: IMPACT-COngoing

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Contact: Sarah Berry, Vincent Mor https://impactcollaboratory.org/improved-testing-for-covid-19-in-skilled-nursing-facilities-impact-c/

Host institution: IMPACT Collaboratory Brown University School of Public Health, Center for Gerontology and Healthcare Research Marcus Institute for Aging Research, Hebrew SeniorLife

Project team: Sarah Berry (Co-PI, Hebrew SeniorLife), Vincent Mor (Co-PI, Brown University School of Public Health), David Gifford (American Health Care Association/National Center for Assisted Living), Jill Harrison (Brown University School of Public Health), Michael Mina (Harvard T.H. Chan School of Public Health), Douglas Fridsma (Inicio Health), Ed Davidson, (Insight Therapeutics), Stefan Gravenstein (Brown University Warren Alpert Medical School), Jonathan Jackson (Massachusetts General Hospital), Kimberly Johnson (Duke University School of Medicine), Rosa Baier (Brown University School of Public Health), Ana Montoya (University of Michigan Medical School), David Grabowski (Harvard Medical School), Cyrus Kosar (Brown University School of Public Health), Keith Goldfeld (New York University School of Medicine), Jasmine Travers (New York University School of Nursing), Maricruz Rivera-Hernandez (Brown University School of Public Health), Shekinah Fashaw (Brown University School of Public Health), Jeff Hiris (Brown University School of Public Health), Susan Mitchell (Hebrew SeniorLife), Elizabeth White (Brown University School of Public Health)

Funding information: National Institute on Aging, IMPACT Collaboratory supplement, 3U54AG063546-02S2

Project summary:

Our goal is to leverage the foundation of the NIA IMPACT Collaboratory to establish IMPACT-COVID-19 (IMPACT-C), which will be dedicated to developing and evaluating SARS-CoV-2 testing strategies among highly vulnerable skilled nursing facility (SNF) residents and workers. The organizational, administrative, and expertise components for IMPACT-C will include: leadership, regulatory structures, dissemination, and investigators. We will leverage IMPACT Collaboratory’s Data Sharing Collaborative that includes 11 national companies with >1,000 SNFs. We have established the infrastructure to securely and regularly receive daily EMR and COVID-19 data from this consortium and link it to Medicare claims and Minimum Data Set assessments. Using this rich and representative database, we will conduct a series of models to inform policies on SARS-CoV-2 testing and to forecast outbreaks. We have additionally designed a cluster RCT of 120-150 facilities to compare the effect of novel, point-of-care testing versus usual care on the rate of COVID-19 infections. Data will be shared with the RADx-UP Coordination and Data Collection Center.

Outputs:

Starting early 2021

Project website:https://impactcollaboratory.org/improved-testing-for-covid-19-in-skilled-nursing-facilities-impact-c/

PUBLICATIONS & OTHER OUTPUTS

Improving prescribing of medications at EOL in LTC homes during COVID-19Ongoing

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Contact: Peter Tanuseputro http://www.ohri.ca/profile/ptanuseputro

Host institution: Bruyere Research Institute

Project team: Peter Tanuseputro, Amy Hsu, Sarina Isenberg, Aynharan Sinnarajah, Jessica Simon, Justin Presseau, Hsie Seow, Daniel Kobewka, Tara Gomes, Breffni Hannon, Vivian Ewa, James Downar, Jenny Lau, Stafford Dean, Hugh Boyd, Camille Munro, Chandra Vig, Patrick Quail, Michelle Grinman, Navjot Virk, Rachel Boissonneault, Denyse Lynch, Amit Arya, Markus Schafer, Aleksandra Grzeszczuk, Melissa Brouwers

Funding information: This project was funded by the Canadian Institutes of Health Research.

Project summary:

Knowledge users have identified a need to improve palliative care in long-term care (LTC) homes in Ontario and Alberta, and investigators in these provinces have access to data to conduct rapid implementation research. Our 3 main objectives are: 1. Data measurement to detect variations in end-of-life medication prescribing (proxy to palliative care delivery) before and during COVID-19; 2. Mixed methods evaluation to understand the barriers/facilitators of end-of-life prescribing in LTC; and 3. Intervention to support homes in both provinces, focusing on those most challenged to provide end-of-life care during COVID-19. For the quantitative component, we will use data on LTC homes in Ontario and Alberta held at Institute for Clinical and Evaluative Sciences (ICES) and Alberta Health Services (AHS). For the qualitative component, we will reach out to LTC homes identified as being top/bottom prescribers and interview staff, healthcare providers, and resident caregivers at these homes to gain a deeper understanding of the quantitative findings.

Outputs:

The research will be completed by December 2021 and expected outputs are:

We plan to publish at least one paper for each of the project objectives:

  • A quantitative descriptive manuscript on the prescribing patterns of end-of-life medications for LTC residents pre-COVID, and examine how they have changed during the COVID-19 pandemic
  • A quantitative manuscript evaluating the additional impact of COVID-19 outbreak status on end-of-life prescribing in LTC
  • A quantitative manuscript exploring variations in prescribing during COVID-19 across LTC home characteristics, prescriber characteristics, and resident characteristics
  • A qualitative manuscript outlining insights into end-of-life prescribing and care in LTC pre-COVID
  • A qualitative manuscript informed by our quantitative findings outlining insights into end-of-life prescribing and care in the top and bottom prescribing homes during COVID-19

We also plan to communicate our findings to our partners at Ontario Palliative Care Network (OPCN) and collaborate to develop educational resources for LTC homes that may have more challenges with providing end-of-life care during COVID-19 and beyond.

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams

PUBLICATIONS & OTHER OUTPUTS

Improving the care of older adults living with dementia across Canada during the COVID pandemic: a mixed methods study to inform policy and practiceOngoing

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Contact: Juliette Champoux-Pellegrin https://www.mcgill.ca/familymed/research/projects/research-organization-healthcare-services-alzheimers-rosa/our-team

Host institution: McGill University

Project team: Isabelle Vedel, Dallas Seitz, Susan Bronskill, Carrie McAiney, Claire Godard-Sebillotte, Nadia Sourial, Yves Couturier, Machelle Wilchesky, Debra Morgan, Geneviève Arsenault-Lapierre, Mary Henein, Laura Rojas Rozo, Saskia Sivananthan

Funding information: This project is funded by the Canadian Institutes of Health Research and includes multiple international, national and provincial partners.

Project summary:

This project has 3 objectives:

  1. To measure the impact of the pandemic on health and social services use, infection rate and mortality of Persons living with dementia both in the community and in long-term care facilities. This will be done using provincial databases.
  2. To understand the Person living with dementia’s and caregivers’ perceived needs, behaviours and experiences of health and social services. This will done through interviews and questionnaires done and filled out by caregivers and Persons living with dementia’s.
  3. To generate and disseminate evidence-based and actionable recommendations on effective strategies to tackle the current wave of the pandemic and prepare for subsequent waves. We will hold a deliberative dialogue with all stakeholders involved.

Outputs:

2021

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

Litigation in Response to COVID-19 in Australian Residential Aged Care and Immigration Detention (Australia)Ongoing

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Contact: Claire Loughnan https://findanexpert.unimelb.edu.au/profile/146247-claire-loughnan

Host institution: University of Melbourne and University of Technology Sydney

Project team: Sara Dehm, Claire Loughnan, Linda Steele

Funding information:

Project summary:

This project evaluates emerging litigation in relation to COVID-19 related deaths in Australian residential aged care centres, in terms of its capacity to address longer term structural harms of institutionalisation and activist calls for de-institutionalisation of aged care. In order to facilitate evaluation, the project compares aged care COVID-19 litigation with COVID-19 litigation strategies and outcomes in the context of an analogous confinement setting: immigration detention. The project involves critical analysis of court documents in COVID-19 litigation by reference to an interdisciplinary theoretical framework drawing on socio-legal studies, critical disability and ageing studies, and migration studies.

Outputs:

An article from this project has now been published:

Dehm S, Loughnan C and Steele L (2021) COVID-19 and Sites of Confinement: Public Health, Disposable Lives and Legal Accountability in Immigration Detention and Aged Care. UNSW Law Journal 44(1). http://www.unswlawjournal.unsw.edu.au/article/covid-19-and-sites-of-confinement-public-health-disposable-lives-and-legal-accountability-in-immigration-detention-and-aged-care/

Abstract:

The global COVID-19 pandemic starkly revealed the underlying structural harms and produced vulnerabilities for people living in closed congregate settings like immigration detention centres (‘IDCs’) and residential aged care facilities (‘RACFs’). This article compares the Australian legal regimes that regulate IDCs and RACFs, conceptualising both as authorising and enabling sites of control, confinement and social isolation. We argue that specific COVID-19 measures have intensified a logic of social exclusion and disposability towards people in IDCs and RACFs. Through comparing recent COVID-19 litigation, the article explores the possibilities and limitations of engaging legal strategies to achieve social reform and legal accountability within both sites of confinement. Ultimately, we suggest that such COVID-19 litigation has the greatest possibility of advancing social justice when it is embedded in a broader politics of de-incarceration and abolition oriented towards political inclusion, public health and building more equitable and just communities.

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

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

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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

Project team: Klara Lorenz-Dant and Adelina Comas-Herrera

Funding information: none

Project 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.

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

MedSafer- Optimizing Prescribing for Pandemic PreparednessOngoing

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Contact: Emily McDonald https://www.mcgill.ca/internalmed/dr-emily-mcdonald

Host institution: Research Institute of the McGill University Health Centre

Project team: Emily McDonald, Todd Lee, Chris Brockington, James Downar, Marnie Wilson, Adam Groening, Emilie Bortolussi-Courval, Robyn Tamblyn, Allen Huang, Babak Rashidi, Peter Wu, Sydney Ross, Han Ting Wang, Lisa McCarthy, Barbara Farrell, Justin Turner, Kiran Battu, Sandra Porter, John Yip, Ted Cohen, Jonathan Sachs, Marie-France Forget, Anna Slawski, Cindy Garcia, Louise Papillon-Ferland

Funding information: This project was funded by the Canadian Institutes of Health Research.

Project summary:

This study is a partnership between MedSafer, Point Click Care (PCC) and two Ontario long term care homes (Hillel Lodge in Ottawa and Kensington Gardens in Toronto). Providing comprehensive medication management is critical during the pandemic to optimize the care received by older adults, who are at high risk of COVID-19 complications. We previously integrated MedSafer, a software for deprescribing, into the PCC electronic medical record. We will be piloting the integration of the software into the workflow of two long term care homes during the ongoing COVID-19 pandemic. We aim to test the feasibility and user experience of providing electronic decision support for medication management, in order to improve care during and beyond COVID-19. This process is expected to decrease harmful or unnecessary medications, improve staff safety and efficiency and lead to better outcomes for residents.

Outputs:

The research will be completed by January 2022 and expected outputs are:

  1. Provide medication management reports to long term care homes during the pandemic
  2. Test feasibility of providing medication management during the pandemic
  3. Test MedSafer integration in Point Click Care
  4. Improve the user experience with MedSafer integrated in Point Click Care
  5. Increase deprescribing during the pandemic for vulnerable populations in long term care
  6. Decrease unnecessary time spent on dispensing and monitoring of potentially inappropriate medications or medications of little added value (improve staff efficiency and maximize safety during the pandemic)
  7. Improve outcomes for residents of long-term care homes during the pandemic and for the future

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams

PUBLICATIONS & OTHER OUTPUTS

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

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

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

Project team: Adrianna Senczyszyn, Katarzyna M. Lion, Dorota Szcze?niak, El?bieta Trypka, Justyna Mazurek, Marta Ciu?kowicz, Maria Ma?kowiak, Marta Lenart, Agnieszka Cyran, Joanna Rymaszewska

Funding information: none

Project 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:

Outputs are expected to be available in February 2021

Project website:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7501840 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/

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

Nurse Practitioner Led Implementation of Health Workforce Recommendations In Long-Term Care Homes During a PandemicOngoing

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Contact: Katherine McGilton https://www.uhnresearch.ca/researcher/katherine-mcgilton

Host institution: KITE - Toronto Rehabilitation Institute - University Health Network

Project team: Katherine McGilton, Jennifer Bethell, Souraya Sidani, Veronique Boscart, Astrid Escrig Pinol, Andrea Iaboni, Shirin Vellani, Colleen Maxwell, Michelle Acorn, Claudia Mariano, Margaret Keatings, Corinne Pollard, Carrie Heer

Funding information: This project was funded by the following: CIHR Institute of Health Services and Policy Research CIHR Institute of Infection and Immunity Centre for Aging and Brain Health Innovation

Project summary:

This study is a twophase adaptation and implementation project of evidence-based health workforce interventions developed by our team to support health and wellbeing of staff and residents in two Long-Term Care Homes (LTCHs) in Ontario during the COVID-19 pandemic. The implementation of workforce interventions will be led by Nurse Practitioners (NPs). NPs are ideally placed to successfully implement and sustain the recommendations due to their dual clinical and leadership roles, as revealed by the findings of our previous qualitative study involving 14 NPs throughout Ontario. In phase 1 the interventions will be selected and adapted to the context; staff needs and staff characteristics within the 2 LTCHs. Phase 2 involves an effectiveness-implementation hybrid design which will assess adaptation and preliminary efficacy of the implementation of recommendations selected in Phase 1. The expected outcome is a reduction in staff moral distress following the implementation of the intervention.

Outputs:

The research will be completed by December 2021 and expected outputs are:

  • An editorial
  • An academic paper
  • A report to the funding agency

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams

PUBLICATIONS & OTHER OUTPUTS

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

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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

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

Funding information: none

Project 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:

end November 2020 (paper with descriptive data)

Project website:

PUBLICATIONS & OTHER OUTPUTS

Presence of Family: (re)Integrating Family CaregiversOngoing

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Contact: James Conklin https://bruyere.uniweb.network/members/46/profile

Host institution: Bruyere Research Institute

Project team: James Conklin, Anita Kothari, Melissa Donskov, Doug Archibald, Sophie Orosz, Amy Hsu, Jennifer Cornell, Lisa Raffoul, Lisa Salapatek, Heidi Sveistrup, Michelle Fleming, Jacobi Elliott, Nancy Hall

Funding information: This project was funded by the following: CIHR Institute of Health Services and Policy Research CIHR Institute of Gender and Health Centre for Aging and Brain Health Innovation

Project summary:

The “Presence of Family: (Re)Integrating Essential Care Partners in Ontario’s LTC Homes” project will help to develop and disseminate an intervention to allow family members (who are chosen by the resident and who provide them with physical/psycho-social care) to have safe access to the LTC home. We will work with three Ontario LTC homes to implement an intervention that combines training with a commitment to follow safety protocols and use ID badges, and facilitates greater access for essential care partners to the home. We will use developmental evaluation, a rapid scoping review, an economic analysis of the value of the care provided by family members, and a mixed methods outcome evaluation. To spread the learning from this work, we will convene an Advisory Board that includes members from participating LTC homes, family members, and other stakeholders.

Outputs:

The research will be completed by December 2021 and expected outputs are:

  1. An understanding of how do residents, essential care partners, and healthcare providers experience the implementation of the intervention in 3 participating LTC homes, including:
  • Identification of factors that facilitate or impede implementation.
  • Determination if experiences differentiated by sex, gender or other aspects of diversity.
  • Identification of factors related to sex, gender or other aspects of diversity.
  1. Identification of outcomes and effects that can be attributed to the intervention in the three homes, and inferences drawn from the evidence to explain these outcomes and impacts.
  2. Identification of features (processes, tools, training, supports) of an effective implementation process for the intervention that could be scaled/spread to other Ontario and Canadian LTC homes, including any special consideration that needs to be drawn to gender roles, gender identity, gender relations and institutional gender/diversity elements that influence implementation.
  3. A set of final outputs to support the scale and spread of the intervention, including:
  • A “business case” based on the results of the economic analysis
  • An Essential Care Partner Implementation Guide that presents an optimized version of the processes used to implement the intervention, with supporting tools available through one of our partner’s websites
  • A minimum of three webinars sharing learnings and allowing participants to action plan and form relationships
  • Publications and presentations made through available and relevant academic channels

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams

PUBLICATIONS & OTHER OUTPUTS

Préserver le lien des résidents en ESLD atteints de troubles cognitifs avec leurs proches en contexte de pandémie: évaluation de la mise en œuvre et des effets d’interventions virtuelles et en personnesOngoing

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Contact: Marie-Soleil Hardy https://www.fsi.ulaval.ca/notre-faculte/repertoire-du-personnel-enseignant-et-administratif/marie-soleil-hardy

Host institution: Universite Laval

Project team: Marie-Soleil Hardy, Philippe Voyer, Marie-Pierre Gagnon, Clémence Dallaire, Marai Cecilia Gallani, Vincent Couture, André Côté, Maude Laberge, Bernadette Dallaire, Éric Gagnon, Machelle Wilchesky.

Funding information: This project was funded by the following: • CIHR Institute of Health Services and Policy Research • CIHR Institute of Aging • CIHR Institute of Gender and Health

Project summary:

The goal of our project is to evaluate the implementation process, the viability and the acceptability of interventions aimed at favouring the presence of relatives (in person or virtually) in 5 LTC’s in Quebec City and in a rural area. We chose patients with Alzheimer’s disease and other dementias as population. We want to assess the characteristics of the LTC’s, facilitating factors and barriers to the implementation of interventions, and the acceptability of the interventions to care staff, family members and the elderly patients. In addition, we will look at the results in the elderly and their relatives. Finally, a cost effectiveness study will be carried out. An evaluative research design is preferred in order to assess the conditions of implementation and document the preliminary effects of the interventions. A multiple case study will be carried out.

Outputs:

The research will be completed by December 2021 and expected outputs are:

  • To identify factors influencing the implementation, viability and acceptability of interventions aimed at favouring the presence of relatives;
  • To show the short-term effects on residents, their relatives and related costs;
  • To offer humane, adapted and safe care to a fragile clientele at high risk of decompensation and mortality;
  • Recognizing family and friends is essential to the quality of life of residents.

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams

PUBLICATIONS & OTHER OUTPUTS

Prioritizing measures taken: Covid-19 Management In NUrsing homes by outbreak TEamS (MINUTES) follow-up study (Part 2)Ongoing

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Contact: Lisa van Tol

Host institution: Leiden University Medical Center, University Medical Center Groningen

Project team: Lisa van Tol MSc, Dr. Sarah Janus, Janneke Groothuijse MSc, Wendy Meester MSc, Dr. Monique Caljouw, Dr. Hanneke Smaling, Prof Sytze Zuidema, Prof. Wilco Achterberg

Funding information: This research was supported by the Ministry of Public Health Welfare and Sport, the University Network of the Care Sector Zuid-Holland (UNC-ZH), and the University Network for care for Older persons of the University Medical Center Groningen (UNO-UMCG).

Project summary:

Dutch long term care organizations installed outbreak teams to coordinate covid-19 infection prevention and control. Outbreak teams’ minutes described a large amount of divers measures that were taken.

The aim of this follow-up study on the “Covid-19 Management In NUrsing homes by crisis TEamS” (MINUTES) study is to prioritize measures taken and to reflect upon decision making by OTs.
Panels of 4 to 7 multidisciplinary nursing home professionals (managers, physicians, nurses, support services, client representatives..) selected, discussed and prioritized measures they found important and urgent with Covid-19 outbreaks. We organized separate panels about measures regarding isolation, residents’ wellbeing, and staff.

Outputs:

Expected outputs of the projects will be:

  • Prioritized measures by multidisciplinary professionals. These important and urgent measures could be recommended to other LTCs.
  • Insight into decision making by outbreak management teams
  • Preliminary factsheets are shared with national policy institutes and participating organizations as policy input, and freely available on our website.

Project website:https://www.lumc.nl/org/unc-zh/onderzoek/Kwaliteit-van-leven/Corona-onderzoekVerpleeghuizen/

PUBLICATIONS & OTHER OUTPUTS

UNC-ZH-UNO-UMCG-Factsheet-Corona-in-Nursing-Homes-in-the-NL_Panels.pdf (776.9 KB)

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)Ongoing

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Contact: Dr Vicente Rodríguez and Carmen Pérez de Arenaza

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

Project team: 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 information: 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)

Project 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.

Outputs:

When are 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

Project website:Project updates will be provided on twitter (@CSICresideCOVID) and through blogs etc.

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

RESICOVID-19. Evaluation of the impact of the COVID-19 pandemic on people and long-term care facilities of Catalonia and proposals for improving the care model.Ongoing

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Contact: Xavier Gómez-Batista https://en.c3rg.com/

Host institution: CENTRAL CATALONIA CHRONICITY RESEARCH GROUP (C3RG)

Project team: Jordi Amblàs, Montse Solé, Javier Jerez-Roig, Laura Coll-Planas, Daniel López, Joan Carles Martori, Anna Ramon, Adelina Comas-Herrera, Pau Moreno, Catuxa Maiz-Mazuela, Xavier Gómez-Batiste, Emília Chirveches; on behalf of: Toni Codina, Ester Busquets, Mireia Canals Botines, Salvador Simó, Gemma Prat, Montse Masó, Sebastià Santaeugènia González, Ramon Oller Piqué, Joan Carles Contel, Rafael de Madariaga Sánchez, Laia Cases, Pau Farrés, Emília Chirveches, Cristina Vaqué, Judit Bort, Marta Sierra, Israel Rodríguez Giralt, Mar Beneyto Seoane, Xavier Costa Tadeo, Paola Galbany Estragués, Marco Inzitari, Paola Galbany Estragués, Joan Carles Contel, Antoni Salvà, Cèlia Estruch, Joan Frigola Reig, Guillem Marca Francés

Funding information: Agency for Management of University and Research Grants (AGAUR); funding code: 2020PANDE00184.

Project summary:

  1. BACKGROUND, JUSTIFICATION, HYPOTHESIS AND OBJECTIVES

1.1 Background

The sector where the COVID-19 pandemic has probably had the most devastating impact has been in the care homes one, especially care homes for older people. Beyond the death toll, it is likely that there have been many and very significant the effects on the psychological and social well-being of residents, their families and professionals. Furthermore, there have been important ethical, political and economic implications that have guided the actions of service providers and the social and health care system.

1.2 Justification

To our knowledge, there has been no systematic and in-depth evaluation of this reality in Catalonia, which would be crucial for planning better present and future responses:

  • This project is centred on what has unfortunately become the face of the COVID-19 pandemic (care homes), a historically neglected and stigmatised setting, where people who are particularly vulnerable to COVID-19 live.
  • This project explores particularly sensitive and essential areas (impact on physical, emotional, social and spiritual needs of residents, family members and professionals) from a gender perspective. This project has been validated by organisations of older people in a participatory process.

1.3 Hypothesis

  • The COVID pandemic has had a high impact on residents, professionals and organisations in the residential sector in Catalonia.
  • The causes of this impact are multifactorial, and related to the characteristics of the pandemic, but also due to previous structural deficits.
  • There are specific responses to each of the causes identified, and the impacts caused, which can constitute a systematic plan for the improvement of the residential sector.

1.4 Objectives

The ResiCOVID-19 project has two main objectives:

  • To evaluate the impact of the pandemic on people living in old age, dependency and mental health care homes in Catalonia, as well as on their families, workers and organisations.
  • On the basis of the lessons learnt, to build proposals for improving care and the care model.
  1. METHODOLOGICAL DESIGN

A research strategy has been designed that combines different methodologies:

For the first objective: Description of COVID-19’s impact in the long-term care home sector

  1. Literature review for international contextualization: Systematic mapping of the literature published from the beginning of the pandemic to the present time.
  2. Analysis of Big data from the Catalan Health Service’s Register of Morbidity and Use of Healthcare Resources: Retrospective population-based study (March 2020) of the population of Catalonia living in long-term care homes.
  3. Fieldwork in a multicentric cohort of people and representative residences: A mixed quantitative/qualitative study to describe the basic characteristics of people who live in care homes, based on a randomized representative sample of long-term care homes in Catalonia.

For the second objective: Proposals to improve the care model

  1. Consensus on improvement proposals with the stakeholders involved: Construction: focus groups + SWOT by dimensions, with professionals and residents/families
  2. International benchmarking of improvement proposals: Structured interviews and review of documentation and national and international literature to identify and describe good practices.

Outputs:
  • Mapping of the literature on the COVID-19 pandemic in care homes
  • Big data analysis of the morbidity and use of health resources of the population living in care homes in Catalonia
  • Mixed quantitative/qualitative study describing the impact and experiences of people living in care homes during the COVID-19 pandemic
  • Recommendations derived from focus groups and SWOT analysis
  • International benchmarking of proposals for improvement

Project website:https://mon.uvic.cat/resicovid19/

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, Margaret Ogden and Wesley Dowridge as members of the 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:

Journal article (pre-print)

PREPRINT: What long-term care interventions and policy measures have been studied during the Covid-19 pandemic? Findings from a rapid mapping review of the scientific evidence published during 2020

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:

Evidence summary: Strategies to support uptake of Covid-19 vaccinations among staff working in social care settings

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

Strengthening COVID-19 resilience of linguistic minorities in long-term careOngoing

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Contact: Irdissa Beogo https://ustboniface.ca/ibeogo/accueil

Host institution: Universite de Saint-Boniface

Project team: Idrissa Beogo, Marie-Pierre Gagnon, Stephanie Collin, Charles Gagne, Gilbert Audette, Eric Tchouaket Ngumeleu, Drissa Sia, Daniel Lussier, Diane Tapp, Bruno Holmes, Gaetan Hache, Brigitte Paquette, Aurèle Foidart

Funding information: This project was funded by the Canadian Institutes or Health Research.

Project summary:

Our project aims to identify and implement promising and best practices, create a community of practice to reduce social isolation and loneliness in LTC residents of linguistic and cultural minorities of Manitoba, Quebec and N-B. It is a collaborative research approach that will be used and the Consolidated Framework for Implementation Research (CFIR) will be considered involving LTC homes residents, families, frontline workers and managers, all seen as experts.

Outputs:

The research will be completed by December 2021 and expected outputs are:

An Interactive web platform built and connecting participating LTC homes to share :

  • Social support activities
  • Increased virtual social activities between LTC homes residents and their families and frontline healthcare workers
  • Functioning community of practice in place to reduce social isolation and loneliness
  • Strengthened relationship between LTC homes facilities in linguistic minority context

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams

PUBLICATIONS & OTHER OUTPUTS

STrengthening Responses to dementia In DEveloping countriesOngoing

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Contact: Nicolas Farina https://www.bsms.ac.uk/about/contact-us/staff/dr-nicolas-farina.aspx

Host institution: London School of Economics and Political Science

Project team: Nicolas Farina, Roxanne Jacobs, Tara Sani, Marguerite Schneider, Imelda Theresia, Yuda Turana, Emiliano Albanese, Sumaiyah Docrat, Petra Du Toit, Cleusa Ferri, Ishtar Govia, Adelina Comas-Herrera, Aliaa Ibnidris, Klara Lorenz-Dant, Martin Knapp & Sube Banerjee

Funding information: UK Research and Innovation’s Global Challenges Research Fund (ES/P010938/1)

Project summary:

Few low- and middle-income countries have data on dementia prevalence obtained directly from their own populations. One element of the STRiDE programme (STrengthening Responses to dementia In DEveloping countries, www.stride-dementia.org/) aims to fill this gap by generating new prevalence evidence in two (South Africa and Indonesia) of the seven STRiDE countries (Brazil, India, Indonesia, Jamaica, Kenya, Mexico, and South Africa). STRiDE is designed to support and accelerate the development of effective dementia policy and national planning in these seven countries and a toolkit that can be applied in other low- and middle-income countries, with the ultimate goal of improving dementia care, treatment and support systems so that people with dementia are able to live well.

Within the prevalence study, 4,400 older adults (and an informant/carer) will be recruited from sites in Indonesia (n=2,200) and South Africa (n=2,200). Whilst the primary outcome will the estimated prevalence of dementia within each country, participants will be asked questions across the following 11 domains: (i) dementia staging, (ii) cognitive measures, (iii) socio-demographics, (iv) costings, (v) activities of daily living and disability, (vi) neuropsychiatric symptoms and depression, (vii) generic quality of life and wellbeing, (viii) disease specific quality of life, (ix) carer burden, (x) stigma, and (xi) elder abuse.

Within some of these domains we will also ask a series of questions related to the impact of COVID-19 on participants’ (e.g. person with dementia and carer) lives, including:

  • Household debt
  • Household income
  • Household spending
  • COVID symptoms, testing and deaths in the household
  • Impact of day-to-day life
  • Impact of health and wellbeing
  • Impact on caring role

Outputs:

Q4 2021

Project website:http://www.stride-dementia.org/

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

Supporting mental health and preventing moral injury among long term care workersOngoing

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Contact: Bonnie Lashewicz https://contacts.ucalgary.ca/info/chs/profiles/1-4839549

Host institution: University of Calagary

Project team: Bonnie Lashewicz, Lorraine Venturato, Navjot Virk, Nick Boettcher, Kimberly Manalili, Cheryll de la Cruz, Mark Attridge, Mona Aboumrad

Funding information: This project was funded by the following: CIHR Institute of Gender and Health CIHR Institute of Population and Public Health CIHR Institute of Musculoskeletal Health and Arthritis

Project summary:

Our study employs a mixed methods approach anchored in CFIR’s 37 constructs, spanning five domains, to shape our data collection and analysis, including iterative rounds of multiple forms of data collection using means from a maximum variation sample of stakeholders. Stakeholders are from three groups: I) LTC+ workers (i.e., nurses, nurses’ aides, physical, occupational and recreation therapists, as well as food service, laundry, maintenance, housekeeping and hair salon workers along with leaders in these program areas) from two Knowledge Users (1 charitable foundation; 1 for-profit organization). Data will be collected from LTC+ workers using surveys, individual interviews, and participating in stakeholder workplace meetings. Surveys will afford workplace level data about risks for moral injury using the Moral Distress Survey (short form, Iaboni, 2021). Interviews will be conducted to collect detailed accounts of mental health needs and moral injury risks by asking workers to share stories of their experiences navigating COVID-19 and to obtain worker ideas for, and assessments of, mental health support/moral injury prevention toolkit ideas.

Outputs:

The research will be completed by December 2021 and expected outputs are:

  • 50 semi-structured virtual interviews
  • 200 Surveys conducted
  • Attend weekly stakeholder workplace meetings as form of data collection
  • Collect high quality, real-time, actionable evidence that will be an inarguable demonstration of truly caring about those who hold the future of Canada’s LTC sector in their hand
  • Exam and unpack the interplay between LTC+ workers and their organizational context
  • Contribute mental health support/moral injury prevention knowledge about LTC+ worker needs
  • Develop an accessible toolkit for LTC+ workers which will include:
  • Aiding in the prevention of moral injury during a pandemic
  • Strategies for promoting implementation, scale up and spread

Project website:https://www.cfhi-fcass.ca/what-we-do/enhance-capacity-and-capability/ltc-acting-on-pandemic-learning-together/implementation-science-teams

PUBLICATIONS & OTHER OUTPUTS

Supporting the Aged Care Sector in Preventing and Mitigating the Negative Impact of COVID-19 on Older Persons in MalaysiaOngoing

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Contact: Rahimah Ibrahim http://myageing.upm.edu.my

Host institution: Malaysian Research Institute on Ageing, Universiti Putra Malaysia

Project team: Tengku Aizan Tengku Abdul Hamid Tan Maw Pin Siti Anom Ahmad Wan Aliaa Wan Sulaiman Fakhrul Zaman Rokhani Yap Wei Aun Hakimah Mohamad Sallehudin Kejal Hasmuk Delren Thomas Douglas Chai Sen Tyng Norisma Aiza Ismail Siti Suhailah Abdullah Siti Aisyah Nor Akahbar

Funding information: World Health Organization [WHO 2020/1026103-0] Period - June, 2020 - February, 2021

Project summary:

This primary purpose of this activity is to improve the early recognition, prevention, response and control of COVID-19 among older persons living in institutions and the community-at-large. The specific objectives are as follows:
1. To support related government agencies in the comprehensive development of guidelines for the welfare and care management of older persons in long-term care facilities during COVID-19 pandemic period;
2. To evaluate the needs of at-risk and vulnerable older persons and assess the operational challenges of relevant health and social aged care providers in managing the risks and impact of COVID-19 on the elderly; and
3. To strengthen the capacity of aged care service providers, including care workers and family caregivers, in the management of older persons with chronic multimorbidity during COVID-19 pandemic period by coordinating information and resources across different sectors and at all levels.

Outputs:

The work with MOH, MWFCD and relevant stakeholders on the capacity building of IPC measures for the older population living in communities as well as facilities
Output 1: To develop comprehensive national guidelines with multiple scenarios and other official materials (i.e. checklists, toolkits, instructional videos) for the detection, prevention, response and control of COVID-19 among older Malaysians living in institutions and the community.
Output 2: To conduct rapid, web-based behavioral insight assessments, evaluate the health and social care needs of at-risk older persons during the coronavirus pandemic as well as identifying the challenges of aged care providers in different settings for policy input.
Output 3: To conduct infection control training through an enhanced industry-wide network and facilitate the acquisition of needed PPE supplies to strengthen the capacity of aged care operators, care workers and family caregivers in the care management of older persons.

Project website:

PUBLICATIONS & OTHER OUTPUTS

Supporting the Sustainability of Long-Term Residential Care in a COVID-19 Environment and in the FutureOngoing

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Contact: Brendan Walsh

Host institution: Economic and Social Research Institute, Dublin

Project team: Dr Maev-Ann Wren, Dr Sheelah Connolly

Funding information:

Project summary:

This research will provide evidence on long-term care homes in Ireland during the COVID-19 pandemic and inform how best to ensure the sustainability of long-term care homes in the longer term. The project is funded by a Research Collaborative in Quality and Patient Safety (RCQPS) COVID-19 Pandemic Award. The project will examine if particular types of long-term care homes were more likely to experience higher COVID-19 infections and deaths. Findings will provide evidence on which homes may require additional support during the pandemic and beyond. The project will also review some of the temporary measures introduced during COVID-19 to support the sector, and assess if, and to what extent, these measures may be necessary in the future to maximise the safety of residents and the sustainability of long-term care homes. A key component of the project is to work closely with knowledge users in the Department of Health and the Health Service Executive to ensure findings from the project can be used to inform policy in practice.

Outputs:
  • Research paper on the association between long-term residential care home characteristics and COVID-19 infections and deaths in Ireland.
  • Research paper on the impact the Temporary Assistance Payment Scheme had on reducing COVID-19 outbreaks in Ireland.

Project website:https://www.esri.ie/current-research/supporting-the-sustainability-of-long-term-residential-care-in-a-covid-19

PUBLICATIONS & OTHER OUTPUTS

Survey on the consequences of the COVID-19 outbreak on informal carersOngoing

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Contact: Stecy Yghemonos https://eurocarers.org/

Host institution: Eurocarers and Istituto Nazionale di Riposo e Cura degli Anziani (INRCA)

Project team: Marco Socci, Sabrina Quattrini, Giovanni Lamura and Sara Santini (IRCCS INRCA) / Stecy Yghemonos and Olivier Jacqmain (Eurocarers)

Funding information: Co-funded by the European Commission via the EU Programme for Employment and Social Innovation (EaSI)

Project summary:

This study is targeted at all European informal/family/unpaid carers providing care to people due to their physical or mental illness, disability or old age. Through an online survey (https://www.surveymonkey.com/r/8B5NBJR?lang=en), it aims to document and analyse how the COVID-19 outbreak has impacted on informal carers’ health, caregiving situation, support networks, access to health and social services, working status, work-life balance and finances – among other aspects. It also seeks to collect carers’ views and recommendations on how to better support informal cares in times of a pandemic.

 

Outputs:

Eurocarers will publish a report summarising the results of the survey in 2021

Project website:Link to the survey (currently available in 6 languages) - https://eurocarers.org/study-on-the-consequences-of-the-covid-19-outbreak-on-informal-carers-across-europe/

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 Covid-19 related public health strategies on the lives of older people living in Uganda 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 and Isaac Ddumba

Funding information: NIHR ARC NWC & University of Liverpool ODA SeedFund

Project summary:

This is a collaboration between Liverpool and the ARCAD in Uganda. The ARCAD is led by Dr Isaac Ddumba. In June 2020, 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:

Christmas 2020

Project website:

PUBLICATIONS & OTHER OUTPUTS

The impact of isolation and quarantine on staff, family and residents living in aged care facilities during the COVID19 pandemicOngoing

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Contact: Dr Jackie Robinson https://unidirectory.auckland.ac.nz/profile/j-robinson

Host institution: School of Nursing, University of Auckland

Project team: Dr Jackie Robinson, Dr Michal Boyd and Professor Merryn Gott

Funding information: Performance Based Research Funding, University of Auckland

Project summary:

A three-phase concurrent exploratory mixed methods study to explore the impact of COV ID-19 related isolation and quarantine restrictions on staff, family and residents in one aged care facility. An analysis of interRAI data will be undertaken using assessments completed prior to, and after lock down restrictions were eased in order to identify changes in the interRAI domains related to resident’s health and wellbeing. Subsequent phases will undertake semi-structured interviews with residential care staff, family and residents on their experiences of isolation and quarantine restrictions and its impact on the health and wellbeing of residents.

Outputs:

Outcomes: data collection has been completed and findings are expected to be ready for publication by March 2021.

Project website:not available specifically for this project however this work sits with the School of Nursing’s Te Arai Palliative and End of Life Care Research Group https://tearairesearchgroup.org/

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 and public health restrictions on people living with dementia and informal carers: a systematic reviewOngoing

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Contact: Dr Clarissa Giebel

Host institution: University of Liverpool

Project team: Clarissa Giebel, Catherine Talbot, Jochen R Thyrian, Katarzyna Lion, Klara Lorenz-Dant, Aida Suarez-Gonzalez, Hilary Tetlow, Rosie Whittington, Jacqueline Cannon

Funding information: NIHR

Project summary:

This is a mixed-methods systematic review, reviewing the evidence of both qualitative and quantitative studies in the field. The aim of this review is to understand the impact of the pandemic and its associated restrictions on the lives of people living with dementia and unpaid carers, specifically focusing on three key areas: (1) Health (including mental health, physical health, cognitive health and dementia symptomatology, and social health); (2) Social care access and utilisation; and (3) Financial implications.

Outputs:

We will submit the systematic review to a journal, and create a lay summary of the findings.

Project website:https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=248050

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 and addressing the mental health of older adults in Colombia: The impact of stressful life eventsOngoing

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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: Dr Clarissa Giebel (PI), Prof Mark Gabbay, Dr Frances Darlington-Pollock, Dr Ross White, Prof Siobhan Reilly, and Colombian Team members: Prof Maria Isabel Zuluaga, Prof Gabriel Saldarriaga

Funding information: UKRI ESRC Newton Fund, NIHR ARC NWC

Project summary:

Colombia has suffered political violence since the 1950s notably la violencia, more recently drug cartel and migrant flows linked. These severely impact citizens. Colombians are now being affected by the global COVID-19 pandemic. It remains unclear how these events are affecting residents’ mental health and wellbeing, particularly older adults.

The proportion of Colombian older adults is expected to double from 10% to 20% by 2050. This rise increasingly impacting upon Colombians, particularly in regions like Urabá in the Department of Antioquia, that have suffered throughout their history from inequality and lack of development due to inattention from the state and the constant presence of prolonged political conflict that deepens these structural inequalities. Those over 60 years of age have witnessed the history of violence in the country, as victims or perpetrators (for those who were part of armed groups). These account for a complex understanding of the conflict and turn them into the advocates for peace, as they have witnessed the dire consequences of war -they have suffered and survived them. In this sense, the elderly in Colombia are the ones who weave the life-story memories of the conflict, but suffer consequences.

Our research centres on the municipality of Turbo, typical of such regions and populations. Uraba Antioqueno has been one of the territories most affected by the Colombian armed conflict in the last six decades. It is considered one of the regions of the Department of Antioquia with the highest numbers of expulsion of people for reasons related to the armed conflict or violence, though at the same time it is one of the main receiving areas for victims from Choco in the Pacific region and the Atlantic coast, as well as the migratory transit of foreigners from Africa and Latin America who seek reaching the United States. In 2020 413,397 inhabitants (78.6% of the total regional population of 525,685) were registered as victims of the armed conflict. In Turbo, the proportion is 64.5% (83,993 victims). In the region, 9.7% (n=14,425) are classed as older adults, living in urban, rural, peri-urban and dispersed rural areas.

Our proposal embeds co-production with public and professional advisors throughout. We have already been undertaking consultations with local older residents and professionals in determining the approach and designing the project.

This proposal will collect and combine key existing datasets added to new information collected using mental health surveys and both individual interviews and focus groups to map the mental health condition and pressures on older adults, suffering from decades of conflict and now COVID19. These findings will link with a systematic review of interventions to support the mental health of older adults in lower and middle income countries (LMICs), with a particular focus on conflict survivors, linked to in-depth interviews with international academic experts.

The evidence summary, combined with quantitative and qualitative data from Turbo will be used to co-design and test a community-based psychosocial care strategy and intervention with, and for, Turbo older residents to reduce and manage mental health problems. It will address the situations identified at family and community levels in the Turbo research phases, linking with different regional health and welfare systems and datasets.

This will then be evaluated as a pilot for its cost effectiveness, impact on mental health and other key factors as well as acceptability to professionals and service users. The findings will be used to inform a larger formal trial grant application across wider populations; as well as guides to implementing the approach more widely to support its application across other populations, within Colombia and other LMICs; as well as higher income countries, starting with England, with a focus on addressing the mental health needs of migrants who have experienced conflict.

Project announcement: Supporting older adults’ mental health in conflict-riven regions of Colombia – News – University of Liverpool

Outputs:

Study running 1st Feb 2021 – 31st January 2024, outputs expected throughout

Project website:

PUBLICATIONS & OTHER OUTPUTS

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

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Contact: 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

Project team: Sara Luck, Katie Aubrecht

Funding information: Canada Research Chairs Program Research Stipend

Project 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.

Outputs:

When are March 2021

Project website:https://www2.mystfx.ca/sociology/spatializing-care-lab

PUBLICATIONS & OTHER OUTPUTS

Understanding how COVID-19 shapes the costs and consequences of providing unpaid care for people with dementia: Part of the Strengthening responses to dementia in developing countries (STRiDE) ProjectOngoing

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Contact: Emily Freeman https://www.lse.ac.uk/cpec

Host institution: London School of Economics and Political Science

Project team: Mariana López-Ortega, Rosa Ma. Farrés (Mexico), Suvarna Alladi, Saadiya Hurzuk, Meera Pattabiraman Jayeeta Rajagopalan, Narendhar?Ramasamy, Priya Thomas (India), Rochelle Amour, Ishtar Govia, Janelle Robinson, Marissa Stubbs (Jamaica), Emily Freeman, Martin Knapp, Adelina Comas-Herrera (UK)

Funding information: UK Research and Innovation Global Challenges Research Fund (ES/P010938/1)

Project summary:

Part of the wider Strengthening responses to dementia in developing countries (STRiDE) project, this sub-study aims to explore the financial, social and health costs and consequences of providing unpaid care for people with dementia in India, Jamaica, and Mexico. We use highly inductive qualitative interviewing to understand the complexities in caregiving experienced by people who care, or have cared, in each setting. In March 2020 we suspended in-person fieldwork in light of the global COVID-19 pandemic and sought to adapt our methodology.

The pandemic presents a period of potential crisis for people providing unpaid long term care. It is likely that some people caring for those with dementia, as well as those they care for, will contract the virus. Moreover, it is likely that a period of complete or reduced face-to-face contact within social networks, reduced availability of services and restrictions on economic activities will affect caregivers’ experiences of providing care. Should either the pandemic, or national and local responses to the pandemic, significantly affect participants’ daily lives, this period is likely to highlight and possibly exacerbate inequities in whether and how providing unpaid care to a family member with dementia presents a burden to caregivers. Data about COVID-19 experiences are likely to help us better understand the broader costs and consequences of providing unpaid dementia care, as well as the impact of response measures on caregivers during the pandemic and the legacy of additional care and support needs that these responses may generate and that will need to be addressed when in-person services resume.

To this end, discussion of COVID-19 experiences will be a key part of a full programme of remote in depth interviews with caregivers in India, commencing February 2021. In Mexico, a series of short ‘check in’ calls with existing participants over the second half of 2020 is being complemented by extended discussion of COVID-19 as part of remote in depth interviews with existing and new participants that began in December 2020. In Jamaica, a longer series of repeated short ‘check in’ calls with caregivers interviewed pre-March 2020 are helping us to generate observational data on COVID-19 experiences and shape plans for further generation of remote in depth interview data later in 2021.

Outputs:

Outputs are expected beginning December 2021.

See the pdf file below for a presentation outlining research questions and methods: The costs and consequences of providing unpaid
care to people living with dementia in middle-income
countries

Project website:https://stride-dementia.org

PUBLICATIONS & OTHER OUTPUTS

ADI-conference-2020_Freeman_Unpaid-Care73.pdf (276.3 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

Alzheimer's Disease and Related Disorders Treatment and Outcomes in America: Changing Policies and Systems [Administrative Supplement]Complete

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Contact: Vincent Mor, Elizabeth White https://www.brown.edu/academics/public-health/cghr/

Host institution: Brown University School of Public Health, Center for Gerontology and Healthcare Research Genesis HealthCare

Project team: Brown University: Vincent Mor (PI), Elizabeth White, Stefan Gravenstein, Cyrus Kosar, Orestis Panagiotou, Kevin McConeghy, Jeffrey Hiris, Yoojin Lee, Christopher Santostefano, Xiaofei Yang Genesis HealthCare: Richard Feifer, Carolyn Blackman, Richard Castor, Clifford Boyd, Denine Hastings

Funding information: National Institute on Aging, 3P01AG027296-11S1

Project summary:

The objective of this administrative supplement is to examine the impact of COVID-19 in US nursing homes, understand its treatment and outcomes in this setting, and identify organizational characteristics that may mitigate or fuel spread of the infection among staff and residents. This is a collaborative partnership between Genesis HealthCare, the largest long-term care provider in the US, and Brown University. To date, we have examined facility and county predictors of outbreak, individual patient risk factors for mortality and other outcomes, mortality trends, symptom presentation, prevalence of asymptomatic and pre-symptomatic infection, and SARS-CoV-2 antibody development in this population. Other analyses are currently underway focused on post-acute care, functional recovery, sensitivity and specificity of SARS-CoV-2 antigen tests, medication management, and COVID-19 outcomes among individuals with chronic kidney disease.

Outputs:

Several papers already published, others under review and in development for publication in late 2020-mid 2021:

White, E.M., Kosar, C.M., Feifer, R.A., Blackman, C., Gravenstein, S., Ouslander, J., & Mor, V. Variation in SARS-CoV-2 Prevalence in US Skilled Nursing Facilities. J Am Geriatr Soc. 2020; 68(10): 2167-2173. DOI: 10.1111/jgs.16752

White, E.M., Santostefano, C.M., Feifer, R.A., Kosar, C.M., Blackman, C., Gravenstein, S. & Mor, V. Asymptomatic and pre-symptomatic SARS-CoV-2 infection rates in a multistate sample of skilled nursing facilities. JAMA Intern Med. 2020 Oct. [Advanced online publication]. DOI: 10.1001/jamainternmed.2020.5664

Blackman, C., Farber, S., Feifer, R.A., Mor, V., & White, E.M. An Illustration of SARS-CoV-2 Dissemination Within a Skilled Nursing Facility Using Heat Maps. J Am Geriatr Soc. 2020; 68(10): 2174-2178. DOI: 10.1111/jgs.16642

McConeghy, K.W., White, E.M., Panagiotou, O.A., Santostefano, C.M., Halladay, C., Feifer, R.A., Blackman, C., Rudolph, J.L., Mor, V. & Gravenstein, S. (2020). Temperature Screening for SARS?CoV?2 in Nursing Homes: Evidence from Two National Cohorts. J Am Geriatr Soc. 2020. [Advanced online publication]. DOI: 10.1111/jgs.16876

Panagiotou, O.A., Kosar, C.M., White, E.M., Santostefano, C.M., Feifer, R.A., Blackman, C., Rudolph, J.L., Gravenstein, S., Mor, V. Risk Factors Associated with All-Cause 30-Day Mortality in Nursing Home Residents with COVID-19. JAMA Intern Med. 2020. [In press]

Project website:

PUBLICATIONS & OTHER OUTPUTS

An inquiry into the lived experience of COVID-19 in the home care sector in Ireland: the clients experienceComplete

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Contact: Jamie Farrelly https://hcci.ie/clients-experience-hcci-research-series-part-2-an-inquiry-into-the-lived-experience-of-covid-19-in-the-home-care-sector-in-ireland/

Host institution: Home and Community Care Ireland

Project team: Jamie Farrelly Dr Tina Benedik Joseph Musgrave

Funding information: N/A

Project summary:

This research is a qualitative study on the impact of Covid-19 on home care clients in Ireland. Through 9 interviews, HCCI explored the mental, physical and social impact of Covid-19 and the coping mechanisms used during the pandemic. This research is a client centered study that builds on previous HCCI research on home care providers experience during Covid-19.

The study finds that robust infection prevention and control measures provided safety and reassurance to clients, allowing most home care to continue uninterrupted and kept cases low relative to acute hospitals and long term residential care facilities.

The need for clients to cocoon in theirs homes and the closure of recreational and day services resulted in clients expressing social isolation and a strain on their mental well-being.

Clients were unable to exercise to the same extent and felt a loss of motivation. The long term effects of sedentary behavior are well documented and the long term physical effects of Covid-19 needs further research.

To cope, clients pointed to personal relationships with family, friends, neighbours and carers as a source of comfort and companionship.

Clients used technology and the internet to facilitate social connections. The internet was popular for online shopping, video games and digital content.

Participants spoke about the importance of keeping a positive mindset when coping with the pandemic. They demonstrated commendable mental resilience and adaptability, developed through their life experiences, bereavements, illness, and religious faith.

In conclusion, the IPC measures put in place by providers reassured participants that their home was safe and helped make home care the safest method of care during Covid-19 Pandemic. While cocooning and social isolation placed a mental strain on participants, personal relationships, technology and a positive mentality helped them adapt and persevere

 

Outputs:

There are several recommendations emerging from this research. Clients should receive a full medical check-up, with social and care services reopened with additional capacity. HSE and providers should build on increased digital literacy and introduce new technology to improve quality of life and standard of care. Home care is established as the safest and most preferential method of care. The Statutory Home Care Scheme should be implemented as a matter of urgency and should include a holistic, patient centred model of care.

Project website:https://hcci.ie/clients-experience-hcci-research-series-part-2-an-inquiry-into-the-lived-experience-of-covid-19-in-the-home-care-sector-in-ireland/

PUBLICATIONS & OTHER OUTPUTS

21.05.31-Client-Research-FINAL.pdf (443.4 KB)

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

Caring for Washington’s older adults in the COVID-19 pandemic: Interviews with organization leaders about the state of social and healthcare services.Complete

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Contact: Clara Berridge http://hdl.handle.net/1773/46272

Host institution: University of Washington, Seattle

Project team: Berridge, C., Parsey, C.M., Ramirez, M., Freitag, C., Johnson, I.M., Allard, S.W.

Funding information: This study was funded by the University of Washington Population Health Initiative’s COVID-19 Economic Recovery Research Grant, along with matching funds from the University of Washington School of Public Health, School of Social Work, and School of Medicine, Department of Neurology.

Project summary:

An interdisciplinary team of aging researchers at the University of Washington released a new report, “Caring for Washington’s older adults in the COVID-19 pandemic: Interviews with organization leaders about the state of social and healthcare services.”

Drawing on interviews with 45 senior leaders of social services and health care organizations serving older adults, this report identifies current challenges confronting service delivery and client care, as well as those that will persist to shape future strategy and planning. Organization senior leaders are most concerned about people living with dementia, those with low-incomes, those who are living alone or unhoused, Latinx immigrant and migrant older adults, people with limited English proficiency, and tribal elders. Several key findings and themes emerge relevant to policy and practice. Themes discussed include:

-intensified social isolation and the digital divide

-creative and promising adaptations

-observed negative health impacts

-staffing reductions and shortages

-urgent fiscal shortfalls and organizational needs

Read the press release

Outputs:

Public report: Berridge, C., Parsey, C.M., Ramirez, M., Freitag, C., Johnson, I.M., Allard, S.W. (October, 12, 2020). Caring for Washington’s older adults in the COVID-19 pandemic: Interviews with organization leaders about the state of social and healthcare services.

Project website:http://hdl.handle.net/1773/46272

PUBLICATIONS & OTHER OUTPUTS

CARING-FOR-WASHINGTONS-OLDER-ADULTS-IN-THE-COVID-19-PANDEMIC.pdf (3.1 MB)

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

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Contact: Patrick Alexander Wachholz https://www.fmb.unesp.br/#!/ensino/pos-graduacao/mestrado-academico-e-doutorado/programas-de-pos-graduacao/pgpesquisaclinica/

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

Project 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 information:

Project 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 ( https://www.ggaging.com )

Project website:

PUBLICATIONS & OTHER OUTPUTS

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

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Contact: Óscar Brito Fernandes

Host institution: Algarve Biomedical Center

Project team: Óscar Brito Fernandes, Pedro Lobo Julião, Nuno Marques, Niek Klazinga, Dionne Kringos

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 Sk?odowska-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).

Project summary:

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.

Project website:

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

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

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Contact: Patrick Alexander Wachholz https://www.fmb.unesp.br/#!/ensino/pos-graduacao/mestrado-academico-e-doutorado/programas-de-pos-graduacao/pgpesquisaclinica/

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

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

Funding information:

Project summary:

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/

Project website:

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

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

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Contact: Sridhar Vaitheswaran https://www.dementiaindia.org

Host institution: Schizophrenia Research Foundation (SCARF) India https://www.scarfindia.org

Project team: Dr. Sridhar Vaitheswaran, Miss. Monisha Lakshminarayanan, Dr. Vaishnavi Ramanujam, Dr. Subashini Sargunan, Miss. Shreenila Venkatesan

Funding information:

Project summary:

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.

Outputs:

https://dx.doi.org/10.1016%2Fj.jagp.2020.06.026

Project website:

PUBLICATIONS & OTHER OUTPUTS

Facing COVID-19: Live-in Care in Central EuropeComplete

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Contact: Michael Leiblfinger

Host institution: Johannes Kepler University (AT), Charles University (CZ), Hungarian Demographic Research Institute (HU), HEKATE Conscious Ageing Foundation (HU)

Project team: Brigitte Aulenbacher, Petra Ezzeddine, Charles University, Dóra Gábriel, Michael Leiblfinger, Kinga Milankovics, Veronika Prieler

Funding information: Brigitte Aulenbacher (lead), Michael Leiblfinger, and Veronika Prieler are the Austrian members of the trinational research project Decent Care Work? Transnational Home Care Arrangements (http://decentcarework.net), funded by the Austrian Science Fund FWF (I 3145 G-29).

Project summary:

During the pandemic, working conditions in receiving and sending countries have been further undermined. Facing worse conditions in their home countries, migrant workers nonetheless have been pushed to accept jobs offered abroad despite potential health and other risks and restrictions during the pandemic. The cross-border care labor market is often portrayed as a win-win one, in which older people receive affordable care and migrants a job paying more than alternatives at home. In fact, this Central European care market creates a scheme of nationality-based structural inequalities, transnational exploitation of workforce, and exclusion amidst a myth of an egalitarian and integrated Europe. Although the fragility of live-in care was given new attention by the pandemic, care workers’ and receivers’ wants and needs were either not addressed, or addressed insufficiently or unevenly. People in need of care and their relatives faced a lack of public support and anxiety because of closed borders. While many measures aimed to ensure the continuation of live-in care, workers’ living and working conditions that were precarious even before the pandemic remained ignored. Because of social distancing – also between care receivers and their relatives –, carers faced increased workloads and isolation. Transnational travel brought the risk of contagion and/or (unpaid) quarantine. Care workers stuck in their home countries faced financial deprivation. And despite discourses about their systemic relevance, care workers were presented as a threat to public health and national labor markets. The social and financial burden of the pandemic thus ended up falling on the shoulders of circular migrants.

Outputs:

Project website:https://globaldialogue.isa-sociology.org/facing-covid-19-live-in-care-in-central-europe/

PUBLICATIONS & OTHER OUTPUTS

Giving a voice to family care partners of older people about the meanings of their experience and recommendations for supportive actions during the COVID-19 pandemic: A critical ethnography (Canada)Complete

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Contact: Anne Bourbonnais https://www.chairepersonneagee.umontreal.ca/en/

Host institution: Université de Montréal and Research Centre of the Institut universitaire de gériatrie de Montréal

Project team: Anne Bourbonnais (Université de Montréal), Jennifer Baumbusch (University of British Columbia), Amy Hsu (Bruyère Research Institute), Stéphanie Daneau (Université du Québec à Trois-Rivières), Jacqueline Rousseau (Université de Montréal), Susan Macaulay (http://myalzheimersstory.com/about/)

Funding information: Research Chair in Nursing Care for Older People and their Families, Canada Research Chair in Care for Older People, and Research Centre of the Institut Universitaire de Gériatrie de Montréal

Project summary:

Using critical ethnography, we will: a) describe the sociocultural context during the COVID-19 pandemic, including facilitating and constraining aspects (prejudices, stereotypes, emotions, health services and policy) for care partners and older people; b) describe the meanings of being a family care partner of an older person living in a long-term care home (LTCH) during the COVID-19 pandemic and; c) elicit and describe the recommendations of care partners for supportive actions that should guide health professionals and public policy to ensure their health and the health of older people during an epidemic. We will recruit 20 to 30 family care partners of older people living in a LTCH. These care partners will either care (or have cared) for the older person living in a LTCH during the COVID-19 pandemic. They will be recruited using a purposive and snowball sampling strategy from a pool of participants from previous projects. We will collect data with a sociodemographic questionnaire, individual semi-structured interviews, field notes and artefacts in the form of articles, audio or video files from mainstream Canadian media and social media posts starting in March 2020. We will analyze all data with the method described by Spradley.

Outputs:

The French report is available: https://www.chairepersonneagee.umontreal.ca/fileadmin/documents/Rapport-projet_Voix.pdf

An English summary is available as pdf (see below) and a journal article is under preparation.

Project website:

PUBLICATIONS & OTHER OUTPUTS

Summary-Voice-Project-Bourbonnais.pdf (42.6 KB)

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

How long-term dementia care facilities in South Africa have coped with the COVID-19 lockdownComplete

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Contact: Marguerite Schneider

Host institution: Alan J Flisher centre for Public Mental Health, University of Cape Town

Project team: Dr Alice Ashwell Roxanne Jacobs Dr Sumaiyah Docrat A/prof Marguerite Schneider

Funding information: Part of the STRiDE project – Strengthening Responses to Dementia in Developing Countries – the UK Research and Innovation’s Global Challenges Research Fund (ES/P010938/1)

Project summary:

With the outbreak of Covid-19 in South Africa in March 2020, the National Advisory Group (NAG) of STRiDE decided to undertake a survey to ascertain how long-term care facilities (LTCFs) that accommodate people living with dementia were responding to Covid-19 and the resultant lockdown. A Covid-19 Working Group was established to oversee this process. Two rounds of a brief survey were distributed to LTCFs via the STRiDE networks – the first in May 2020 and a second in July/August 2020. The responses from both rounds were collated in this report. This report was discussed with survey respondents (staff from the participating LTCFs) and a separately with the STRiDE COVID discussion group. A series of lessons learnt, and recommendations were developed in these meetings and reported in sections 5 and 6 of the report. A total of 58 responses were received from 48 facilities (10 submitted responses in both waves). The sample was spread nationally and represent the slightly better resourced facilities. The recommendations propose that the entire long-term care system be reviewed, including LTCFs, home-based care and community-based support. Conversations are needed about the future of retirement villages and care homes, alternative perspectives on ageing, ‘age-friendly’ communities, and appropriate models of care.

Outputs:

A report on the survey and findings has been published here: https://ltccovid.org/wp-content/uploads/2020/12/Covid-19-and-Long-Term-Care-Facilities-in-South-Africa-survey.pdf

A journal article is in preparation for completion in early 2021.

Project website:https://stride-dementia.org/

PUBLICATIONS & OTHER OUTPUTS

Covid-19-and-Long-Term-Care-Facilities-in-South-Africa-survey.pdf (511.2 KB)

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

Impact of COVID-19 Policy Responses on Live-In Care Workers in Austria, Germany, and SwitzerlandComplete

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Contact: Michael Leiblfinger

Host institution: Johannes Kepler University Linz (AT), University of Zurich (CH), Goethe University Frankfurt (DE)

Project team: Michael Leiblfinger, Veronika Prieler, Karin Schwiter, Jennifer Steiner, Aranka Benazha, Helma Lutz

Funding information: This research is part of the of the project Decent Care Work? Transnational Home Care Arrangements, a cooperation of Aranka Benazha, Amanda Glanert, Helma Lutz, Iga Obrocka, and Ewa Palenga-Möllenbeck from Goethe University Frankfurt/Germany; Brigitte Aulenbacher, Michael Leiblfinger, and Veronika Prieler from Johannes Kepler University Linz/Austria; and Karin Schwiter, Jennifer Steiner, and Anahi Villalba from the University of Zurich/Switzerland. The project is funded by the German Research Foundation DFG, project no. LU 630/14-1, by the Austrian Science Fund FWF, project no. I 3145 G-29, and by the Swiss National Science Foundation SNSF, project no. 170353. http://decentcarework.net

Project summary:

Context: The measures taken to counter the COVID-19 pandemic restricted the circular migration of live-in care workers between their countries of origin and the elderly persons’ households.

Objective: In this comparative policy analysis, the impact of COVID-19 related policy measures for transnationally organised live-in care in Austria, Germany, and Switzerland is investigated.

Method: Policy measures and media debates were analysed and inquiries with care workers, representatives of care agencies, unions, and activist groups were carried out between March and June 2020.

Findings: In accordance with their institutionalisation of live-in care, Austria, Germany, and Switzerland responded differently to the challenges the pandemic posed to live-in care arrangements. However, all three countries focused on extending care workers’ rotas and re-establishing transnational mobility. These priorities subordinated the interests of care workers to those of care recipients. Furthermore, the measures remained short-term solutions that failed to acknowledge the fundamental flaws and inequalities of a care model that relies primarily on female migrant workers and wage differentials within Europe.

Limitations: This policy comparison is based on an in-depth analysis of COVID-19 related policies, supplemented by inquiries among stakeholders with whom research had been done prior to the pandemic. More in-depth interviews are required to further substantiate the findings concerning their perspectives and gain insight into the longer-term effects of the pandemic.

Implications: The pandemic has brought the flaws of the live-in care model to the fore. Countries need to rethink their fragile care policies, which build on social inequality and uninhibited transnational mobility.

Outputs:

Paper and presentations

Project website:http://decentcarework.net

PUBLICATIONS & OTHER OUTPUTS

51-430-1-PB.pdf (1,007.2 KB)

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)

NuRsing hOme Staff burdEn during Covid-19 paNdemic (ROSEN-project)Complete

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Contact: Manuela Hoedl

Host institution: Institute of Nursing Sience, Medical University of Graz

Project team: Manuela Hoedl, Daniela Schoberer & Nina Thonhofer

Funding information:

Project summary:

In recent months, several papers were published on the COVID-19 pandemic and its effects. A literature review conducted in Pubmed revealed that 425 papers containing the MeSH terms “COVID-19” and “nursing” have been published since January 1, 2020. Most of these articles place a focus on the care of patients in specific hospital settings. Only six articles focused the nursing home setting, and only two of these articles address the situation of staff offering direct nursing home care. Therefore, few studies – and especially qualitative studies – have been carried out to explore the situation in nursing home settings during the pandemic. Such studies would enrich the scientific community and clinical decision makers and provide detailed insights.

We conducted a qualitative descriptive interview study with 18 participants to obtain an in-depth understanding of the burdens placed on staff working in a nursing home during the pandemic as well as the consequences of the situation. Nursing home staff considered the qualitative work load and work organisation as major concerns during this pandemic. The main aspects that were described with regard to the qualitative work load were the additional tasks that needed to be performed during the pandemic to care for the residents, because the interventions placed the residents under stress and dealing with the relatives presented significant challenges. Nursing home staff reported experiencing psychological consequences, such as uncertainty, fear and stress, as major effects of the COVID-19 situation.

Outputs:

Articles & presentations

Project website:

PUBLICATIONS & OTHER OUTPUTS

Nursing Homes During the COVID-19 Pandemic—Resident and Staff Cases and DeathsComplete

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Contact: Lori Gonzalez, Ph.D.

Host institution: Claude Pepper Center, Florida State University

Project team: Lori Gonzalez, Ph.D.

Funding information:

Project summary:

This study used existing datasets to examine variation across nursing homes in infection rates and deaths among residents and staff with an eye toward how to reduce future outbreaks. It also examined differences in these outcomes between traditional nursing homes and Green House homes.

Outputs:

The analyses presented here indicate that there are several factors that policymakers and nursing homes could employ in the future to reduce threats from infections like COVID-19. Geographic location was associated with infection and death rates–with nursing homes in the Northeast and South, compared to the West, having higher resident and staff infections and higher resident death rates. Nursing homes in the Northeast (but not the South) had a larger number of staff deaths. The West, with Washington state being “ground zero” for COVID-19 infections would be expected to have higher rates, however, infection deficiency data showed before the pandemic, that nursing homes in the Northeast and South had a greater rate of deficiencies, which could explain some of the geographic variation. In the analyses, the number of people with COVID-19 admitted to nursing homes were a consistent predictor of resident infection rates and deaths and the number of infections and deaths among staff. Preliminary analyses here indicate that residents fared better in Green House homes, compared to traditional nursing homes (but not staff).

Project website:https://claudepeppercenter.fsu.edu/research/policy-issue-briefs/nursing-homes-during-the-covid-19-pandemic-resident-and-staff-cases-and-deaths/

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COVID_nh_issue_brief_edit.pdf (165.8 KB)

Older adults' long-term care (LTC) experiences in Ghana during the COVID-19 pandemic: A descriptive qualitative studyComplete

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Contact: Kofi Awuviry-Newton https://www.newcastle.edu.au/profile/kofi-awuvirynewton-uon

Host institution: The University of Newcastle

Project team: 1Kofi Awuviry-Newton Jacob Oppong Nkansah, Abraham Newton Kwamina Abekah-Carter

Funding information: None

Project summary:

This study explored older peoples’ lived experiences regarding the LTC during the COVID-19 pandemic in Ghana. A descriptive qualitative approach employing semi-structured interviews were used to collect data from 15 older people from southern Ghana

Outputs:

Analysis of interview data resulted in five interrelated themes; 1) LTC sources and nature during COVID-19 pandemic, 2) older peoples’ LTC satisfaction level, 3) LTC alterations during COVID-19, 4) feelings of neglect and 5) resilience in LTC during COVID-19. Sustainability of LTC depends on the state authority to devise innovative LTC policies and programs to promote the wellbeing of older people and their primary caregivers.

Papers are currently under review.

Project website:

PUBLICATIONS & OTHER OUTPUTS

On the situation of home care in Germany during the Corona pandemic. Results of an online survey of informal caregivers of working age.Complete

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Contact: Dr. Katrin Ratz https://www.socium.uni-bremen.de/home/en/%20%20%20and:%20https://www.public-health.uni-bremen.de/

Host institution: SOCIUM Research Centre Inequality and Social Policy and Institute for Public Health and Care Research (IPP) of the University of Bremen, in cooperation with DAK Gesundheit and the association wir pflegen e. V., Bremen, September 2020University of Bremen

Project team: Contact person: Karin Wolf-OstermannHeinz Rothgang, Dominik Domhoff, Franziska Heinze, Prof. Dr. Moritz Heß, Thomas Kalwitzki, Dr. Katrin Ratz, Annika Schmidt Kathrin Seibert

Funding information:

Project summary:

The coronavirus pandemic poses major challenges to many groups. One of these, however, is usually not in the focus of public interest – the informal caregivers. This study therefore investigated the impact of the coronavirus pandemic on family carers and how social distancing measures and higher hygiene requirements affect informal carers. For this purpose, more than 1,000 informal caregivers in Germany who are younger than 67 years and for whom multiple burdens from work, family and care are common were surveyed with an online questionnaire about the care situation, the compatibility of care and work and changes in their perceived burden of care as well as their state of health.

Outputs:
  • Only a very small proportion of respondents (<1 %) are or have been infected with the coronavirus, yet the care situation has changed for 59 % of respondents.
  • For 57% of the respondents, care has become more time-consuming. The burden of care has increased significantly on average, not least because professional help can no longer be (or could no longer be) used to the usual extent.
  • For 71% of the respondents, the Corona virus pandemic has made it even more difficult to reconcile care and work.
  • The state of health has worsened for 52% of respondents and their self-assessed quality of life has decreased.

An English summary of the findings was published here, and the full report (in German, is available here.

How Covid-19 has affected informal caregivers and their lives in Germany

Project website:

PUBLICATIONS & OTHER OUTPUTS

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:

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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

Single Site Employment During Covid-19 in Residential Aged Care Facilities, A Multi-Stakeholder PerspectiveComplete

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Contact: Professor Denise Jepsen https://researchers.mq.edu.au/en/persons/denise-jepsen

Host institution: Macquarie University, Sydney, Australia

Project team: Professor Denise Jepsen, Toni Barker

Funding information: This research was commissioned and funded in October 2020 by Aged and Community Services Australia (ACSA) on behalf of the sector-led consortium also including Leading Age Services Australia (LASA), The Guild and several Unions.

Project summary:

Report on a study into the implementation of the single-site employment (SSE) practices introduced as part the Guiding Principle for Victorian residential aged care facilities (RACFs) in 2020 to assist with managing the Covid-19 outbreak. A mix of employee, union, peak and advocate plus provider interviews were conducted.

Outputs:

Discussion document intended to provide a comprehensive multi-stakeholder perspective on this new employment practice.

Project website:

PUBLICATIONS & OTHER OUTPUTS

Jepsen-Barker-MQ-Covid-Residential-Aged-Care-Single-Site-Employment-final-report-210606-1.pdf (4.3 MB)

Social connection in long-term care homes: A scoping review of published research on the mental health impacts and potential strategies during COVID-19 (Canada)Complete

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Contact: Jennifer Bethell https://kite-uhn.com/

Host institution: The Kite Research Institute, Toronto Rehabilitation Institute, University Health Network

Project team: Jennifer Bethell (KITE, Toronto Rehabilitation Institute, University Health Network, Toronto, Canada), Katelynn Aelick (Behavioural Supports Ontario Provincial Coordinating Office, North Bay Regional Health Centre, Canada), Jessica Babineau (Library and Information Services, Toronto Rehabilitation Institute, University Health Network, Toronto, Canada), Monica Bretzlaff (Behavioural Supports Ontario Provincial Coordinating Office, North Bay Regional Health Centre, Canada), Cathleen Edwards (Family Councils Ontario, Canada), Josie-Lee Gibson (Ontario Association of Residents’ Councils, Canada), Debbie Hewitt Colborne, Behavioural Supports Ontario Provincial Coordinating Office, North Bay Regional Health Centre, Canada), Andrea Iaboni (KITE, Toronto Rehabilitation Institute, University Health Network, Toronto, Canada) Dee Lender (Ontario Association of Residents’ Councils, Canada), Denise Schon (Lakeside Long Term Care Family Council, Toronto, Canada), Katherine McGilton (KITE, Toronto Rehabilitation Institute, University Health Network, Toronto, Canada)

Funding information: This research was supported by a “Knowledge Synthesis: COVID-19 in Mental Health and Substance Use” operating grant from the Canadian Institutes of Health Research (CIHR).

Project summary:

We conducted a scoping review to summarize research literature linking social connection to mental health outcomes, specifically among LTC residents, as well as research to identify strategies to help build and maintain social connection in this population during COVID-19. We searched MEDLINE(R) ALL (Ovid), CINAHL (EBSCO), PsycINFO (Ovid), Scopus, Sociological Abstracts (Proquest), Embase and Embase Classic (Ovid), Emcare Nursing (Ovid) and AgeLine (EBSCO) for research that quantified an aspect of social connection among LTC residents; we limited searches to English-language articles published from database inception to search date (July 2019). For the current analysis, we included studies that reported: (1) the association between social connection and a mental health outcome; (2) the association between a modifiable risk factor and social connection; or (3) intervention studies with social connection as an outcome. From studies in (2) and (3), we identified strategies that could be implemented and adapted by LTC residents, families and staff during COVID-19 and included the papers that informed these strategies.

Outputs:

This review is summarized with: 1) an academic publication; (2) an infographic; and, (3) a report. The latter two are available in English and French.
https://www.jamda.com/article/S1525-8610(20)30991-9/fulltext

Project website:http://www.encoarteam.com/index.html; https://twitter.com/EncoaRteam and https://www.jamda.com/article/S1525-8610(20)30991-9/fulltext;

PUBLICATIONS & OTHER OUTPUTS

infographic-Bethell-et-al-social-connection.jpg (988.7 KB)

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:

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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

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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/

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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