The impact and implications of Covid-19 on the relational, social, and healthcare experiences of hospice care in the West Midlands
Lead Research Organisation:
University of Warwick
Department Name: Warwick Medical School
Abstract
People with life limiting conditions are some of the most vulnerable to Covid-19. Until recently, hospice care has largely been associated with in-person, specialist, and building-centric support. Covid-19 has been a catalyst to its redesign, bringing rapid and on-going changes that are affecting every aspect of hospice care and support for the dying. However, we do not know how effective these changes to hospice services have been, how they have affected experiences of providing or receiving hospice care and support, and if these changes may have been experienced unevenly.
The study's aim is to identify nationally relevant recommendations to mitigate adverse relational, social and healthcare impacts of Covid-19 upon hospice services for vulnerable service users and those that care for them. The West Midlands region provides an ideal context in which to explore these issues, with its diverse community and broad demographic population served by 22 hospices.
We will collate and provide an expert review of the grey evidence on Covid-19-associated service redesign that hospices in the region are producing. We will also produce in-depth understanding of the experiences of those involved in receiving and providing hospice care during the pandemic, and the determinants that are affecting this.
We will use this evidence to quickly develop recommendations for local and national policy and practice. We will draw on our existing networks and collaborate with Marie Curie to develop a series of reports, delivered and disseminated throughout the project, to hospice service users, stakeholders, political leaders and civil society groups.
The study's aim is to identify nationally relevant recommendations to mitigate adverse relational, social and healthcare impacts of Covid-19 upon hospice services for vulnerable service users and those that care for them. The West Midlands region provides an ideal context in which to explore these issues, with its diverse community and broad demographic population served by 22 hospices.
We will collate and provide an expert review of the grey evidence on Covid-19-associated service redesign that hospices in the region are producing. We will also produce in-depth understanding of the experiences of those involved in receiving and providing hospice care during the pandemic, and the determinants that are affecting this.
We will use this evidence to quickly develop recommendations for local and national policy and practice. We will draw on our existing networks and collaborate with Marie Curie to develop a series of reports, delivered and disseminated throughout the project, to hospice service users, stakeholders, political leaders and civil society groups.
Organisations
Publications
MacArtney J
(2021)
What do we know about the impact of the Covid-19 pandemic on hospices? A collaborative multi-stakeholder knowledge synthesis
in AMRC Open Research
MacArtney, J.I.
(2023)
Op Ed: The voices and experiences of the terminally ill must not be side-lined by attempts to return to the status quo
in Nursing Times
Mayland C
(2022)
Addressing inequitable access to hospice care
in BMJ Supportive & Palliative Care
Van Langen-Datta S
(2022)
The impact of Covid-19 pandemic on hospices: A systematic integrated review and synthesis of recommendations for policy and practice
in Health Open Research
| Title | Things change, things changed (Video) |
| Description | Video piece (21 mins 30 seconds) hosted on the Coventry Creates website* with commentary form the Artist (Emily Warner) and ICoH study CI, Dr John MacArtney. *https://staging.coventrycreates.co.uk/project/things-change-things-changed/ |
| Type Of Art | Artwork |
| Year Produced | 2021 |
| Impact | There was a large online launch of the Coventry Creates event, which the piece contributed to and was featured in: https://twitter.com/johnmacartney/status/1468651728098758668 |
| URL | https://staging.coventrycreates.co.uk/project/things-change-things-changed/ |
| Title | Warner and MacArtney (2022) Things change, things changed (written), SoFiZine, February, p39 |
| Description | A written submission by Artist Emily Warner and ICoH study CI John MacArtney to the SoFi ezine (Sociological Fictions): https://sofizine.com/ The piece reflects on the initial findings from the ICoH study, including the first paper (MacArtney et al., 2021). |
| Type Of Art | Creative Writing |
| Year Produced | 2022 |
| Impact | TBC |
| URL | https://sofizine.files.wordpress.com/2022/02/sfz10_online_lr.pdf |
| Description | We showed how the Covid-19 pandemic had significant impact on the care and support provided to people with terminal illnesses - people who remain highly vulnerable to Covid-19 affecting both the amount of life they have left, and the quality of that life. We found that at the start of the pandemic many patients and carers felt abandoned and hospice staff believed they were overlooked by policy decisions. However, as the pandemic progressed, hospices sought innovative ways to care for patients, while also protecting them from contracting Covid-19: this ranged from increasing the offer of telephone and video support, to expanding their services to reach people in their homes (van Langen-Datta et al, 2022). Our first paper (MacArtney et al., 2021) reviewed the existing, but very limited (in early 2021), evidence on the impact of Covid-19 on hospices. We combined these findings with the results of a focus group with hospice staff and the input from an expert panel to identify nine key areas for research into the impact of the pandemic on hospices. These issues were: • Resources and funding. • Volunteers. • Visiting arrangements. • Demographies and geographies of care. • Place of care (day and out-patient). • Hospice-at-home. • Digital and remote palliative healthcare. • Changes that worked and did not work (individual case studies). • Bereavement support. We were the first (and still only) study to produce in-depth descriptive reports for each of the four key hospice cohorts affected by the pandemic: patients; carers; staff; senior managers. As well as addressing the impact of the pandemic across the nine key areas, we also identified implications for practice and provided recommendations for clinicians and service users. Reports are freely available here: https://publishing.warwick.ac.uk/index.php/uwp/catalog/series/icoh Towards the end of the study we reviewed the published literature again to identify what recommendations for hospices had been made across the nine key areas (van Langen-Datta et al., 2023). We identified significant gaps related to policy recommendations on carer visitation in hospices, inequities of palliative care, and hospice-at-home services. Working with Marie Curie, we then produced a policy report that identified four key themes: • The pandemic emergency response challenged the 'gold standard' of personalised and holistic care that hospices provide. • Hospices played a vital role in supporting people dying at home. • Hospices adopted technology at speed and scale, with mixed results. • The pandemic had a major impact on the health, wellbeing and bereavement experiences of carers and staff. The policy report had seven recommendations 'For hospice care in our health and care system' and four to support hospices 'Living with covid'. The report, which includes an executive summary, is available here: https://www.mariecurie.org.uk/policy/compromised-connections This study has implications for the ongoing pandemic (endemic). Many people with life-limiting conditions remain at risk from Covid-19 because it can both shorten and significantly reduce the quality of time they have left. In a society that is 'living with (getting) Covid', future research will need to explore what measures will help people with terminal conditions and the hospices that care for them, so that they can live with not getting Covid. |
| Exploitation Route | The findings from our cohort reports are aimed at clinical hospice audiences. They identify several key ways to support people with life-limiting illnesses who continue to be made vulnerable to the ongoing circulation of Covid-19. The Policy report 'Compromised Connections', written with Marie Curie, is aimed at policy makers and healthcare commissioners. It identifies key policy initiatives to support hospices and those with life-limiting conditions. |
| Sectors | Healthcare,Government, Democracy and Justice |
| URL | https://warwick.ac.uk/fac/sci/med/research/hscience/apc/llcdyingincomm/icoh/ |
| Description | We were awarded three supplementary engagement grants. The first from 'Coventry Creates' to engage with a local artist to translate our findings into an art piece for the public. The second from Warwick Policy Support Fund to develop outputs to engage with policy audiences, including two short films. The third from Warwick's Impact Acceleration Account allowed us to develop a third film and blog to increase awareness of the ongoing issues with Covid-19 people with terminal illness are facing. We have sought to "enhance effectiveness of policy and public services" by: • Presenting findings and policy report to the Department of Health and Social Care Palliative and End-of-life Care team on 8 June 2022. • On 9 June we held an online event hosted by Julian Knight MP and attended by representatives from several other MP offices in the West Midlands. The event was also attended by over 50 invited guests, including regional and national policy makers, palliative care stakeholders, and Patient and Public Involvement representatives. • We also circulated a 'parliamentary briefing' based on the report to all West Midlands MPs. • We submitted evidence to the All Party Parliamentary Group (APPG) for End of Life Care and the APPG for Hospices, and Dr MacArtney (CI) was quoted twice in their report (p15 and p31), with the study findings cited in several places (pages 35 (193; 195), p38 (213), p41 (236)). • The 'Compromised Connections' report was also cited in Marie Curie's submission to the National Covid-19 inquiry. • The policy report was cited in UK Parliament PostNote - a research briefing for MPs. • The third film was played on a loop at the Marie Curie stand at the Conservative Party conference in November 2022. • Dr MacArtney was invited to present at the Enhancing Palliative and End of Life Care Services event held by Institute of Government & Public Policy in September 2022. We sought to 'enhance quality of life and health' by sharing our findings with public, patients and carers: • The Marie Curie policy report was covered in the traditional media in The Carer, Mirage News and India Education Diary as well as on the Sheffield and Warwick University websites and the Marie Curie media centre. It was also covered by the website eHospice. • On social media, in June 2022 Marie Curie posted two threads and one single post on Twitter (total of 10 tweets). 1) Seven-part thread with the long video attached - 14,365 impressions, 549 engagements. 2) Tweet with two of the quotes -128 impressions, engagements 13 3) Two-part thread thanking Julian Knight with shorter video attached - impressions 2042, engagements 43 • We published a blog on Marie Curie's TalkAbout site, raising awareness of the ongoing issues with Covid-19 that people with terminal illnesses are facing. This had had 620 views in total in the first month since publication. • We also released a third short film about the ongoing issues, which was retweeted by: o Marie Curie main Twitter account (130.5k followers) o Retweeted by ESRC (85k followers). o Marie Curie Research account (7.1k followers) • The blog and third film featured in Marie Curie's January Research Newsletter - sent to 2,301 contacts. We also sought to 'enhance quality of life and health' by sharing our findings with Healthcare professionals: • Dr MacArtney presented the findings in a 1-2-1 meeting with the Chief Executive of Marie Curie on 18 July 2022, who asked for a further meeting to discuss how the findings can be integrated into Marie Curie's future strategy for their hospices. • The Compromised Connections policy report and first two videos were also shared as new Tweets by Warwick Newsroom and here; Primary Care Warwick; and shared as retweets by numerous other leading clinicians and academics in the field. • The policy report was highlighted in a Tweet as, "vital research that should be read by every hospice", by Professor Kate Flemming, Professor of Hospice Practice and Evidence Synthesis. https://twitter.com/ktflemm/status/1534897276153434112?s=20&t=cqoZFiJ-z5b6YSIjP__WcA • Ann Dix, Clinical Editor at the Nursing Times, in response to the press release for the third film said, "This is an important and much needed piece of work" (email to Warwick PR). She requested we submit a follow-up piece relating to the role nurses can play in preventing those with terminal conditions from getting covid. This led to an additional output of an Op-Ed published in the Nursing Times on 06 February 2023: https://www.nursingtimes.net/opinion/the-voices-and-experiences-of-the-terminally-ill-must-not-be-side-lined-06-02-2023/ • Dr MacArtney presented findings (including the second video) at Marie Curie online conference in February 2023 to over 400 people, including hospice clinicians and members of the public interested in palliative and end of life care. The presentation was described as "so powerful and deeply moving", "really excellent and so important", "wonderful and so moving", "such a valuable presentation" and "emotional" by audience members in the chat. • Dr MacArtney has presented the policy report findings, along with the videos at the following talks in the West Midlands. He has received informal feedback that the policy report has helped to instigate policy change within independent hospices in the West Midlands and nationally. This includes at events, where senior clinicians have spoken with Dr MacArtney after the event to say how important and helpful the study findings have been at a local level: o At the 'West Midlands Palliative Care Research Community' meeting, 9 June 2022, attended by approx. 15 research engaged hospice clinicians. o At the 'Building a Research Hub for Palliative Care in Birmingham and the West Midlands' (BRHUmB) forum, 2 August 2022, attended by approx. 20 research engaged palliative care clinicians and academics. o The 'WM Cares Showcase event', a one-day conference on 5 October 2022 for research active palliative care clinicians in the West Midlands. We collaborated with a local artist, Emily Warner, to produce two pieces of artwork called "Things Change, Things Changed". • The University of Warwick 'Coventry Creates' pages for the artwork associated with 'Impact of Covid 19 on Hospices' study has had, between 8 December 2021 and 5 February 2023 101 unique IP address views. • The video and written piece is available here: https://coventrycreates.co.uk/project/things-change-things-changed/ Since 8 December 2021 - Things Change, Things Changed has had 147 pages views (including repeat views). • A written piece was also published in So Fi Zine (p39): https://sofizine.com/latest-edition/edition-10/ • There was the online launch of Coventry Creates, e.g. https://twitter.com/johnmacartney/status/1468651728098758668 76 people participated in the online launch of the additions to Coventry Creates in December 2021. • The piece was featured at a Coventry Creates celebratory event where the artist presented the piece (search 'Emily Warner' on the page for photos): https://warwick.ac.uk/about/cityofculture/artists-researchers/coventry-creates/coventry-creates-celebratory-event/ • I filmed a short video discussing my involvement that was shown at the Resonate Festival on 19-21 April 2022. Approximately 30 people (artists, researchers etc.) attended the in-person Coventry Creates celebratory event - Coventry Creates Celebratory Event (warwick.ac.uk) - which was part of Resonate Festival. |
| First Year Of Impact | 2022 |
| Sector | Healthcare |
| Impact Types | Cultural,Societal,Policy & public services |
| Description | Citation in UK Parliament PostNote |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | https://researchbriefings.files.parliament.uk/documents/POST-PN-0675/POST-PN-0675.pdf |
| Description | Marie Curie Parliamentary Briefing: New research into the impact of Covid-19 on experiences of hospice care in the West Midlands (ICoH) |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Description | Presentation and discussion with DHSC PEOLC team |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Description | Quoted and citation in All Party Parliamentary Group (APPG) on Hospice and End of Life Care report |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | https://hukstage-new-bucket.s3.eu-west-2.amazonaws.com/s3fs-public/2023-02/Final%20APPG%20report.pdf... |
| Description | Coventry Creates Artist Funding |
| Amount | £2,550 (GBP) |
| Organisation | University of Warwick |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 07/2021 |
| End | 12/2021 |
| Description | Impact Acceleration Account |
| Amount | £9,892 (GBP) |
| Organisation | University of Warwick |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 06/2022 |
| End | 12/2022 |
| Description | Warwick Policy Support Fund |
| Amount | £21,322 (GBP) |
| Organisation | University of Warwick |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 12/2021 |
| End | 03/2022 |
| Description | AMRC Open Research Author Blog about the Collaborative Knowledge Synthesis |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Interview blog to raise awareness of the paper's findings and the difficulties faced conducting research during the pandemic |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://blog.f1000.com/ |
| Description | Blog: Covid isn't over for people with terminal illnesses |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Invited blog posted on Marie Curie's "TalkAbout" blog pages. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.mariecurie.org.uk/talkabout/articles/covid-isnt-over-terminal-illnesses/354907 |
| Description | Creative Writing: Things change, things changed |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Published in "So Fi Zine", v10, p39. Watson, A. (Editor). Online: Frances St Press, ISSN 2209-3028 |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://sofizine.com/latest-edition/edition-10/ |
| Description | Death, dying and disposal conference - The Impact and implications of Covid-19 on the relational, social, and healthcare experiences of Hospice care in the West Midlands (ICOH) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Presentation to academics and researchers |
| Year(s) Of Engagement Activity | 2021 |
| Description | Film: The impact and implications of Covid-19 on hospice care in the West Midlands and nationally - interview |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Film introducing the study via interview with CI (MacArtney). Shared on social media. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://vimeo.com/714379804/cf8d2b875f?embedded=true&source=vimeo_logo&owner=48583075 |
| Description | Film: The impact of Covid-19 on hospice care |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Short film providing summary of study key findings. Promoted on Twitter; Facebook and shown at several presentations. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://vimeo.com/718223856/6101e04ace?embedded=true&source=vimeo_logo&owner=48583075 |
| Description | Film: The ongoing effects of Covid-19 |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Short film raising awareness of ongoing COVID-19 issues terminally ill face. Promoted on social media (Twitter, Facebook, LinkedIn) and via press releases. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://vimeo.com/772063995/45ac1a2e8f?embedded=true&source=vimeo_logo&owner=48583075 |
| Description | Keynote Address: The Ongoing Challenge Of COVID-19 For The Hospice Sector - Lessons From The First Two Years |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Understanding the challenges of local hospices in the West Midlands through reflecting on 70 interviews across four key cohorts (patients, carers, staff, and senior managers) as well as analysing 255+ documents, including local guidance, procedures, and emails Identifying what we know about the compromises that were made to hospice services and the impacts upon staff and service users Exploring how hospices in the West Midlands are seeking to return to providing high-quality end-of-life care and how this can be applied at a wider national level Sharing lessons and recommendations from the pandemic to shape ongoing responses, including: recognising how the pandemic response is transforming hospice services from increased hospice-at-home services to providing more bereavement support; and how hospices can continue to mitigate the ongoing physical and wellbeing risks posed by COVID-19 for service users and staff |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://igpp.org.uk/event/Enhancing-the-Quality-of-Palliative-and-End-of-Life-Care-Services-2022 |
| Description | Launch of Policy Report event |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Event to launch Compromised Connections Policy Report chaired by West Midlands' MP and attended by two other West Midlands' MPs, as well as regional healthcare commissioners, hospice senior managers and staff. Included JM presenting study findings, hospice clinician and PPI reflections, and Marie Curie presentation of policy recommendations, followed by Q&A. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Marie Curie Conference (online): Learning the ongoing lessons from the Covid-19 pandemic: Impact on hospice staff and service user wellbeing |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Over 400 people watched the presentation. Feedback in chat included: "Really excellent and so important. Thank you for highlighting this issue which affect[s]s so many"; "Great Presentation"; "Thank you so much, so powerful and very moving due to the relatable content"; "Very interesting and moving presentation"; "Such a valuable presentation"; "Really interesting"; "Really wonderful work John"; "That was wonderful and so moving. Congratulations on all you have done and thank you!" |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.mariecurie.org.uk/research/annual-research-conference-2023 |
| Description | Medical Sociology conference - The Impact and implications of Covid-19 on the relational, social, and healthcare experiences of Hospice care in the West Midlands (ICOH) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Presentation to academics and researchers |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation - Warwick Medical School Divisional Seminar: The Impact of Covid-19 pandemic on Hospices in the West Midlands (ICoH): Study findings and recommendations for policy and practice |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | Invited presentation to speak at Warwick Medical School's Health Science Divisional Seminar. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation of study findings and implications for practice to hospice staff |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Third sector organisations |
| Results and Impact | Attended regional hospice research network to present main study findings and recommendations for policy and practice. Attended by staff from 5-7 hospices in the region. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to Chief Executive of Marie Curie |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | 1-to-1 audience and presentation to Chief Executive of Marie Curie, Matthew Reed, to present findings form study and discuss implications for hospice policy and practice |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to WM Cares of ICoH Videos and reports |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Short (5mins) presentation of the main study video and brief introduction to the five reports |
| Year(s) Of Engagement Activity | 2022 |
| Description | Radio interview for ICoH study launch |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Short radio interview with regional (West Midlands) station |
| Year(s) Of Engagement Activity | 2021 |
| Description | Video composition: Things change, things changed. Coventry Creates. |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Artwork by Emily Warner, inspired by research from the ICoH study, developed in collaboration with the CI (MacArtney) as part of Coventry Creates initiative. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://coventrycreates.co.uk/project/things-change-things-changed |