Supporting people bereaved during COVID-19: a mixed methods study of bereaved people's experiences and the bereavement services supporting them
Lead Research Organisation:
CARDIFF UNIVERSITY
Department Name: School of Medicine
Abstract
People bereaved during the Covid-19 crisis face significant challenges that shape their experiences of grief. The sudden nature of many Covid-19 deaths and infection control measures that limit family contact with patients adds to the distress of the bereaved. Whether the cause of death is Covid-19 or another illness/event, social distancing measures mean that family members grieve alone and mourning practices are disrupted. People from Black and minority ethnic groups (BAME) are particularly affected by Covid-19 and also experience barriers to accessing bereavement services. Covid-19 has also brought significant challenges for bereavement services. Social distancing requirements make usual in-person individual and group bereavement support impossible, whilst responding to abnormal bereavement requires additional competencies among staff.
This study aims to investigate the grief experiences, support needs and use of bereavement support by people bereaved during the pandemic, and the adaptations, challenges and innovation involved in delivering equitable bereavement support.
We will use qualitative and quantitative methods in three work packages:
Work Package One involves a UK wide survey administered at three time points: baseline, 7 and 13 months post-death. Recruitment will be via social media, organisations representing BAME groups, and bereavement organisations. Questions will investigate the impact of end-of-life and post-death experiences during Covid-19 and subsequent access to, needs for and experiences of bereavement support. Validated measures will assess grief and coping response, social support, prolonged grief disorder (PGD) and quality of life (QoL).
Work Package Two involves semi-structured telephone interviews with a selection of survey respondents after each survey round. The interviews will explore experiences of grief and bereavement during Covid-19, including bereavement support use and unmet needs for support. When selecting interview participants, priority will be given to people from BAME backgrounds and those whose survey responses indicate unmet needs, greater vulnerability and poorer outcomes, to enable exploration of specific challenges during the pandemic.
Work Package Three will include an online survey of bereavement service providers. The survey will identify service adaptations, key challenges and approaches to delivering accessible bereavement care during the pandemic. Survey findings will inform targeted case studies, developed via telephone interviews, to describe innovative practice.
This study, developed with public contributors, will identify 'real-time' implications for the delivery of end-of-life care and bereavement support during and beyond the pandemic. It will enable us to recommend how to achieve equitable and effective bereavement support, pandemic-specific competencies needed by bereavement support workers and specific types of support that should be prioritised at regional and national levels, whilst working throughout to ensure prompt translation into practice.
This study aims to investigate the grief experiences, support needs and use of bereavement support by people bereaved during the pandemic, and the adaptations, challenges and innovation involved in delivering equitable bereavement support.
We will use qualitative and quantitative methods in three work packages:
Work Package One involves a UK wide survey administered at three time points: baseline, 7 and 13 months post-death. Recruitment will be via social media, organisations representing BAME groups, and bereavement organisations. Questions will investigate the impact of end-of-life and post-death experiences during Covid-19 and subsequent access to, needs for and experiences of bereavement support. Validated measures will assess grief and coping response, social support, prolonged grief disorder (PGD) and quality of life (QoL).
Work Package Two involves semi-structured telephone interviews with a selection of survey respondents after each survey round. The interviews will explore experiences of grief and bereavement during Covid-19, including bereavement support use and unmet needs for support. When selecting interview participants, priority will be given to people from BAME backgrounds and those whose survey responses indicate unmet needs, greater vulnerability and poorer outcomes, to enable exploration of specific challenges during the pandemic.
Work Package Three will include an online survey of bereavement service providers. The survey will identify service adaptations, key challenges and approaches to delivering accessible bereavement care during the pandemic. Survey findings will inform targeted case studies, developed via telephone interviews, to describe innovative practice.
This study, developed with public contributors, will identify 'real-time' implications for the delivery of end-of-life care and bereavement support during and beyond the pandemic. It will enable us to recommend how to achieve equitable and effective bereavement support, pandemic-specific competencies needed by bereavement support workers and specific types of support that should be prioritised at regional and national levels, whilst working throughout to ensure prompt translation into practice.
Organisations
- CARDIFF UNIVERSITY (Lead Research Organisation)
- University of Sheffield (Collaboration)
- National Bereavement Alliance (Collaboration)
- University of Oxford (Collaboration)
- Queen's University Belfast (Collaboration)
- Keele University (Collaboration)
- North Tees and Hartlepool Hospitals NHS Foundation Trust (Collaboration)
- Marie Curie (Collaboration)
- University of Glasgow (Collaboration)
Publications
Burton L
(2024)
"I have never felt so alone and vulnerable" - A qualitative study of bereaved people's experiences of end-of-life cancer care during the Covid-19 pandemic.
in BMC palliative care
| Title | These four walls: grief in the pandemic |
| Description | We commissioned and worked with artist Ellie Harrison to produce our short film, which was launched online by Good Grief Festival in May 2022. Using flat-lay imagery and incorporating real accounts from research participants bereaved during the pandemic, the film aims to convey the reality of grieving at this unprecedented time. Short film : 'These Four Walls: Grief in the Pandemic' - Good Grief (goodgrieffest.com). https://goodgrieffest.com/journal/watch-now-these-four-walls-grief-in-the-pandemic/ |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2022 |
| Impact | Feedback from Good Grief Festival Film-launch, May2022, suggested an empowering effect on attendees in terms of sharing and validating experiences, and supporting connectedness. The film has been watched over 950 times and is accessible on the websites of Good Grief Festival, CovidAid, AtaLoss, and psychotherapist/author Julia Samuel. |
| URL | https://goodgrieffest.com/journal/watch-now-these-four-walls-grief-in-the-pandemic/ |
| Title | sj-jpg-2-pmj-10.1177_02692163211043372 - Supplemental material for Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic |
| Description | Supplemental material, sj-jpg-2-pmj-10.1177_02692163211043372 for Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic by Emily Harrop, Silvia Goss, Damian Farnell, Mirella Longo, Anthony Byrne, Kali Barawi, Anna Torrens-Burton, Annmarie Nelson, Kathy Seddon, Linda Machin, Eileen Sutton, Audrey Roulston, Anne Finucane, Alison Penny, Kirsten V Smith, Stephanie Sivell and Lucy E Selman in Palliative Medicine |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2021 |
| URL | https://sage.figshare.com/articles/figure/sj-jpg-2-pmj-10_1177_02692163211043372_Supplemental_materi... |
| Description | Findings from the surveys and interviews with bereaved people demonstrated the exceptional challenges of pandemic bereavement, including high levels of disruption to end-of-life care, dying and mourning practices as well as to people's social networks, coping mechanisms and grief processes. We identified factors associated with worse experiences at the end of life (e.g. deaths in care homes/hospital; Covid-19 deaths), and with higher levels of support-need and vulnerability in grief (e.g. social isolation and loneliness). We identified relatively high levels of grief vulnerability and levels of Prolonged Grief Disorder, and considerable needs for emotional and therapeutic support. We also found, however, that people experienced significant barriers to receiving and accessing such support from friends/family, communities and services. These barriers included reluctance to seek help, limited knowledge of bereavement-support options and how such support could help them, as well as lack of appropriate support. Over time, however, an increasing number of support-types were used, most commonly support from friends and family, one-to-one counselling and online communities/forums. Results demonstrate the value and benefits of all support types, but especially support from family and friends, support groups and individual counselling. We found that the pandemic had a significant impact on the support offered by bereavement services. 78.2% had changed services; 51.7% introduced new services. There was a significant reduction in provision of all face-to-face support and increase in online and telephone support. Challenges included staff/volunteers providing support from home, emotional impact on staff/volunteers, increased pressure on staff due to client volume and complexity of needs, implementing staff training and financial challenges. However, 93% reported positive changes/opportunities during the pandemic, e.g. new coordination initiatives. Our findings highlighted also inequity of support: 67.3% of services reported there were groups with unmet needs not accessing their services before the pandemic; most frequently people from minoritised ethnic communities (49%), sexual minority groups (26.5%), deprived areas (24.5%) and men (23.8%). Compared with before the pandemic, 3.4% of services were seeing more people from minoritised ethnic groups, while 6.1% were seeing fewer. 25.2% of services did not collect ethnicity data. Qualitative findings demonstrated the disproportionate impact of the pandemic on minoritised ethnic communities, including disruption to care/mourning practices, and the need for culturally appropriate support. |
| Exploitation Route | This synthesis of results from the Bereaved during COVID-19 study demonstrates the exceptional challenges of pandemic bereavement, including high levels of disruption to end-of-life, death and mourning practices as well as to people's social networks and usual coping mechanisms. We identified considerable needs for emotional and therapeutic support among bereaved people alongside significant difficulties in receiving and accessing support, including for their children. Across our seven publications, we have made the following recommendations for improving the experiences of adults, children and young people bereaved during and following this and future pandemics. 1) Reducing the trauma associated with death experiences, through improved communication with and involvement of families, safe facilitation of family visiting to healthcare settings, and, where this is not possible, connecting families and loved ones through accessible remote communication methods. 2) Improving family support immediately after a death, including routinely providing opportunities to discuss patient care and the circumstances of the death, and information about locally and nationally available bereavement support for adults, children and young people. 3) Greater resourcing and expansion of national and regional adult and child bereavement services, including culturally-competent support, tailored to the needs of those bereaved during the COVID-19 pandemic, and specific support for groups with shared experiences and characteristics. 4) Implementing strategies to improve awareness of bereavement support options for adults and children and young people, including information on services, self-help resources and materials for different age groups, promoted and made available online and in community settings. 5) Mitigating loneliness and social isolation, including flexible support bubble arrangements for the recently bereaved when restrictions are in place and informal community-based interventions aimed at strengthening social networks, grief literacy and communication skills, with regards to children and adults. 6) Training for school staff to have age-appropriate conversations with students around grief and bereavement, and to be able to identify when a child might need additional specialist support. During lockdown periods of school closure specialist programmes should continue for existing students (remotely if needed), whilst also proactively identifying and engaging with newly bereaved families who may need support. 7) Developing, promoting and adhering to guidance and best-practice recommendations regarding: a) funeral options during times of social restrictions, b) supporting those administering the death of their deceased relative, and c) supporting bereaved employees. 8) Providing opportunities for remembrance, greater respect and listening to those bereaved. This means recognising the potentially dehumanising and alienating consequences of death-statistics and conspiracy theories in mainstream and social media; facilitating national and local initiatives which support private and public remembrance; and inclusive consultation with those recently bereaved (e.g. via the UK Commission on Bereavement: bereavementcommission.org.uk) to improve support for bereaved people and ensure lessons are learned for future pandemics. 9) Greater efforts to tackle inequity in access to bereavement support - and many service providers both recognise this and are ready to implement changes to widen access to their support. |
| Sectors | Communities and Social Services/Policy Healthcare |
| URL | http://www.covidbereavement.com |
| Description | Since launching the study in August 2020, our work has informed and enhanced UK bereavement policy, practice and service-development during and post-pandemic. Our interim report, published November 2020, identified bereavement challenges and the need to improve the support available to people, and was widely reported in UK media. Following discussion of our 2020 report with Marie Curie, the National Bereavement Alliance (NBA) and other charity-partners, the UK Commission on Bereavement (UKCB) was launched in June 2021. We both sat on the steering group of the UKCB in key advisory roles, which included meetings with the bereavement team at the Dept. of Health Social Care (DHSC) to discuss research-findings and policy-implications. The UKCB published its report in October 2022, following extensive public and professional consultation. In Wales similar influence has been achieved through Harrop's role on the (Welsh Government hosted) National Bereavement Steering Group, which developed the National Framework for Bereavement Care (October 2021). We collaborated with the Marie Curie Policy team in Northern Ireland, publishing an influential policy-report in May 2021. To influence practice we regularly presented results to provider/practitioner audiences, including physicians, nurses, psychotherapists and grief-counsellors. We directly engaged with the public through Good Grief Festival events, podcasts, blogs, and production of a short film, empowering bereaved people and raising awareness of their experiences among wider society. Using our research and in collaboration with our charity-partners, we're currently developing a public-facing resource which will help bereaved people (and those working with them) to identify appropriate support. Impact on policy-makers Our results are cited in the high-profile UKCB Report, which outlined eight principles for achieving cross-sector and societal improvements in how bereaved people are supported. We are continuing to meet with policy-makers to implement these recommendations, including ongoing engagement with DHSC. They are also published in the recent APPG report for hospice and end of life care, following recent consultation exercise. With the UKCB steering group we supported the development of the 2022 NIHR/DHSC policy-research call on ethnic minority communities' experience of accessing bereavement-services (| NIHR). We are now co-applicants on the successful bid, continuing working towards equitable-support. Study-findings are cited in the (Wales)National Framework for Bereavement Care which supports commissioners and service-providers to deliver equitable, high-quality bereavement support. The Welsh Government has committed to meeting the Wales-specific recommendations of the UKCB report. In Northern Ireland, our collaborative report (MarieCurie2021) fed into work commissioned by the Dept.of Health on bereavement support-planning during Covid-19, and informed the aims and strategy of the Bereavement Network, including development of a Bereavement Charter. Our most recent publication on Prolonged Grief Disorder has been used in the UK and Scottish Covid Inquiries Impact on health and bereavement-services Feedback following our presentations indicate impact on professional-practice. Healthcare professionals considered the importance of facilitating family-patient contact during the pandemic and improving communication with families before and after death; our work is also cited on Public Health England Palliative Care website. Therapists/counsellors reflected on the significance of the pandemic-context for grieving and therapeutic-practice. Training coordinators at Cruse Bereavement Support and Macmillan used our work in their education sessions for staff/volunteers. Our film has been used by Compassion in Dying and the University of Bristol to support medical-student teaching, and disseminated to Cruse volunteer-counsellors. Impacts on public Feedback from Good Grief Festival events (Covid Bereavement,October2020; Film-launch,May2022) suggested an empowering effect on attendees in terms of sharing and validating experiences, and supporting connectedness. The film has been watched over 950 times and is accessible on the websites of Good Grief Festival, CovidAid, AtaLoss, and psychotherapist/author Julia Samuel. Using our research findings we have developed and launched a new Grief Support Guide, which helps bereaved people to find appropriate support. |
| Sector | Communities and Social Services/Policy,Education,Healthcare |
| Impact Types | Societal Policy & public services |
| Description | BeCovid publications on bereavement experiences during pandemic used by Covid-19 Public Inquiry |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Description | BeCovid publications on bereavement experiences during pandemic used by Covid-19 Public Inquiry (training) |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | By including research in induction training of all Inquiry staff (civil servants) this has them to understand some of the impacts of the lockdowns and pandemic on mental health |
| Description | BeCovid study featured in Medical Schools Report |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | https://www.medschools.ac.uk/media/2923/responding-to-a-pandemic-uk-universities-response-to-covid-1... |
| Description | Citation of interim study results in open letter from National Bereavement Alliance to UK Department Health Secretary, Matt Hancock and Nadine Dorries (UK Bereavement Minister) |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| URL | https://nationalbereavementalliance.org.uk/ourpublications/calling-on-the-government-for-better-supp... |
| Description | Contribution to training programme for CRUSE volunteers with plans made for further pandemic-specific training |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | - |
| Description | Evidence from study included in APPG report on hospice and end of life care |
| 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 | Gave oral evidence to UKBereavement Commission session on End of Life care |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Description | Inclusion of interim study results in letter to Government from the Good Grief Trust during National Grief Awareness Week |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Description | Interim results cited in Welsh Government National Bereavement Framework Policy Document, currently in development. |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Citation in other policy documents |
| Description | Launch, dissemination and organisational uptake of Grief Support Guide |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Grief Support Guide is a tool to be used within public services |
| Description | Ongoing involvement in UK Bereavement Commission Steering group (reported October 2022) |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | Our results are cited in the high-profile UKCB Report, which outlined eight principles for achieving cross-sector and societal improvements in how bereaved people are supported. We are continuing to meet with policy-makers to implement these recommendations, including ongoing engagement with DHSC. The Welsh Government has committed to meeting the Wales-specific recommendations of the UKCB report. With the UKCB steering group we supported the development of the 2022 NIHR/DHSC policy-research call on ethnic minority communities' experience of accessing bereavement-services (| NIHR). We are now co-applicants on the successful bid, continuing working towards equitable-support. |
| URL | https://bereavementcommission.org.uk/ukcb-findings/ |
| Description | Results from Bereavement study included in Framework for Bereavement Care in Wales |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Citation in other policy documents |
| Impact | greater awareness of the experiences of bereaved people - highlighting service gaps and challenges to influence improved services and better accessibility of public services |
| Description | Results on Prolonged Grief during and beyond the pandemic being used in Scottish and UK Covid Inquiries |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Description | Study publications cited in UK Parliament Post Note |
| 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 | Study website included on Public Health England Intelligence Website for Palliative Care |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | https://fingertips.phe.org.uk/profile/end-of-life/supporting-information/resource/dataandintel |
| Description | Work on bereavement included in Medical Charities |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | https://www.amrc.org.uk/making-a-difference-impact-report-2021 |
| Description | "Finding the bereavement support that's right for you; development of evidence-based resources for people experiencing bereavement" |
| Amount | £9,951 (GBP) |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2022 |
| End | 03/2023 |
| Description | Equitable Bereavement Care for All- A qualitative study to improve bereavement services for those from minoritised ethnic groups." |
| Amount | £37,325 (GBP) |
| Organisation | National Institute for Health and Care Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 04/2023 |
| End | 10/2024 |
| Description | The long-term grief experiences and support needs of people bereaved during the Covid-19 pandemic: cohort survey 4th timepoint |
| Amount | £15,000 (GBP) |
| Funding ID | MCSGS-21-701 |
| Organisation | Marie Curie |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2022 |
| End | 01/2023 |
| Title | Bereavement Support Needs and Helpfulness Scales |
| Description | The core outcomes dimensions that were identified in Marie Curie Bereavement Outcomes grant (see Harrop 2020a) were directly used to construct scales measuring bereavement support needs and the perceived helpfulness of support in the survey in the UKRI/ ESRC grant 'supporting people bereaved during Covid-19'. |
| Type Of Material | Physiological assessment or outcome measure |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | The identification of core outcomes and outcome dimensions in the Marie Curie Bereavement grant enabled us to construct new scale measuring support needs and the helpfulness of support across key domains, which is currently being used to longitudinally investigate people's bereavement experiences during Covid-19 and more specifically to identify what support needs people have. Based on first round data collected in the support needs scale we identified high level needs for psycho-emotional support in our first inter-rim analysis and have recommended greater investment and provision of bereavement services to meet these needs. These results have been used by bereavement organisations to help them lobby for increased funding of bereavement services and better support for the bereaved. The support needs scale has now been partially validated with exploratory factor analysis using the survey responses of participant sample, with two sub-scales identified (emotional and practical support needs). Results using the scale have been reported in two of our study publications, with the factor analysis also reported in one of these publications (Selman et al. 2022). |
| URL | https://journals.sagepub.com/doi/full/10.1177/00302228221144925 |
| Title | Bereavement during Covid-19 study data-sets |
| Description | Work Package One; A UK survey of people bereaved between 16th March 2020 and 2nd January 2021. Three time points: baseline (n=711), c. 7 months (n=384) and c. 13 months (n=297) post-bereavement. At baseline 88.6 % were female, 43.8% were bereaved by Covid-19, 55.6 % had lost parents, followed by partners (21.4%). 4.7% identified with a minority ethnic background. Validated measures assessed grief and coping response (Adult Attitude to Grief scale), social support (Inventory for Social Support), prolonged grief disorder (PGD) (Traumatic Grief Inventory) and wellbeing (ONS wellbeing measure). Work Package Two; Semi-structured interviews with sub-sample of survey participants, interviewed between May 2021 and February 2022. 24 participants completed a first interview and 15 completed a second interview around 4 months after their first interview. 19 were female, 10 had lost partners, 11 were bereaved by Covid-19, 6 identified with minority ethnic background. Work Package Three: Cross-sectional open online survey of UK voluntary sector bereavement services (March-May 2021) (n=147); Qualitative case study interviews with bereavement service providers at a purposive sample of services (14 services, 24 interviews). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | None that aware of yet (archived Summer 2022) |
| URL | https://reshare.ukdataservice.ac.uk/855751/ |
| Description | Advisory group for Bereavement during Covid-19 Study |
| Organisation | Keele University |
| Department | Health Services Research Unit, Keele University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We obtained the funding and are running the ESRC funded Bereavement During Covid-19 Study, these colleagues are collaborators or advisory group members on this study. |
| Collaborator Contribution | They provide academic, practitioner and policy expertise to the Bereavement During Covid-19 Study, either as collaborators or advisory group members. Our advisory group meets quarterly and members also comment on key documents (e.g surveys, reports, study information), and have been helping to promote and disseminate the survey. |
| Impact | Successful funding application to ESRC and effective project delivery to date. The relationship with some of these colleagues was established during previous Marie Curie funded Supporting People Bereaved during advanced illness grant, and they are now collaborators or advisory group members, providing expertise on bereavement experiences, support and outcomes in our current grant. |
| Start Year | 2020 |
| Description | Advisory group for Bereavement during Covid-19 Study |
| Organisation | National Bereavement Alliance |
| Sector | Charity/Non Profit |
| PI Contribution | We obtained the funding and are running the ESRC funded Bereavement During Covid-19 Study, these colleagues are collaborators or advisory group members on this study. |
| Collaborator Contribution | They provide academic, practitioner and policy expertise to the Bereavement During Covid-19 Study, either as collaborators or advisory group members. Our advisory group meets quarterly and members also comment on key documents (e.g surveys, reports, study information), and have been helping to promote and disseminate the survey. |
| Impact | Successful funding application to ESRC and effective project delivery to date. The relationship with some of these colleagues was established during previous Marie Curie funded Supporting People Bereaved during advanced illness grant, and they are now collaborators or advisory group members, providing expertise on bereavement experiences, support and outcomes in our current grant. |
| Start Year | 2020 |
| Description | Advisory group for Bereavement during Covid-19 Study |
| Organisation | North Tees and Hartlepool Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | We obtained the funding and are running the ESRC funded Bereavement During Covid-19 Study, these colleagues are collaborators or advisory group members on this study. |
| Collaborator Contribution | They provide academic, practitioner and policy expertise to the Bereavement During Covid-19 Study, either as collaborators or advisory group members. Our advisory group meets quarterly and members also comment on key documents (e.g surveys, reports, study information), and have been helping to promote and disseminate the survey. |
| Impact | Successful funding application to ESRC and effective project delivery to date. The relationship with some of these colleagues was established during previous Marie Curie funded Supporting People Bereaved during advanced illness grant, and they are now collaborators or advisory group members, providing expertise on bereavement experiences, support and outcomes in our current grant. |
| Start Year | 2020 |
| Description | Advisory group for Bereavement during Covid-19 Study |
| Organisation | Queen's University Belfast |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We obtained the funding and are running the ESRC funded Bereavement During Covid-19 Study, these colleagues are collaborators or advisory group members on this study. |
| Collaborator Contribution | They provide academic, practitioner and policy expertise to the Bereavement During Covid-19 Study, either as collaborators or advisory group members. Our advisory group meets quarterly and members also comment on key documents (e.g surveys, reports, study information), and have been helping to promote and disseminate the survey. |
| Impact | Successful funding application to ESRC and effective project delivery to date. The relationship with some of these colleagues was established during previous Marie Curie funded Supporting People Bereaved during advanced illness grant, and they are now collaborators or advisory group members, providing expertise on bereavement experiences, support and outcomes in our current grant. |
| Start Year | 2020 |
| Description | Advisory group for Bereavement during Covid-19 Study |
| Organisation | University of Glasgow |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We obtained the funding and are running the ESRC funded Bereavement During Covid-19 Study, these colleagues are collaborators or advisory group members on this study. |
| Collaborator Contribution | They provide academic, practitioner and policy expertise to the Bereavement During Covid-19 Study, either as collaborators or advisory group members. Our advisory group meets quarterly and members also comment on key documents (e.g surveys, reports, study information), and have been helping to promote and disseminate the survey. |
| Impact | Successful funding application to ESRC and effective project delivery to date. The relationship with some of these colleagues was established during previous Marie Curie funded Supporting People Bereaved during advanced illness grant, and they are now collaborators or advisory group members, providing expertise on bereavement experiences, support and outcomes in our current grant. |
| Start Year | 2020 |
| Description | Advisory group for Bereavement during Covid-19 Study |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We obtained the funding and are running the ESRC funded Bereavement During Covid-19 Study, these colleagues are collaborators or advisory group members on this study. |
| Collaborator Contribution | They provide academic, practitioner and policy expertise to the Bereavement During Covid-19 Study, either as collaborators or advisory group members. Our advisory group meets quarterly and members also comment on key documents (e.g surveys, reports, study information), and have been helping to promote and disseminate the survey. |
| Impact | Successful funding application to ESRC and effective project delivery to date. The relationship with some of these colleagues was established during previous Marie Curie funded Supporting People Bereaved during advanced illness grant, and they are now collaborators or advisory group members, providing expertise on bereavement experiences, support and outcomes in our current grant. |
| Start Year | 2020 |
| Description | Advisory group for Bereavement during Covid-19 Study |
| Organisation | University of Sheffield |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We obtained the funding and are running the ESRC funded Bereavement During Covid-19 Study, these colleagues are collaborators or advisory group members on this study. |
| Collaborator Contribution | They provide academic, practitioner and policy expertise to the Bereavement During Covid-19 Study, either as collaborators or advisory group members. Our advisory group meets quarterly and members also comment on key documents (e.g surveys, reports, study information), and have been helping to promote and disseminate the survey. |
| Impact | Successful funding application to ESRC and effective project delivery to date. The relationship with some of these colleagues was established during previous Marie Curie funded Supporting People Bereaved during advanced illness grant, and they are now collaborators or advisory group members, providing expertise on bereavement experiences, support and outcomes in our current grant. |
| Start Year | 2020 |
| Description | Bereavement during COVID 19 policy work Northern Ireland |
| Organisation | Marie Curie |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | The research team are running the study. |
| Collaborator Contribution | The partners disseminated the survey in Northern Ireland and are using Northern Ireland results to inform policy work and further research activity relating to bereavement during and beyond Covid-19. |
| Impact | The survey was widely disseminated in NI and summary findings from NI specific baseline data are being used to inform further engagement activity/focus groups held by Patient Client Council and with this will inform the Marie Curie led Northern Ireland Commission on Bereavement. Report was launched in May 2021 , used to inform work of Northern Ireland Bereavement Network |
| Start Year | 2020 |
| Title | The Grief Support Guide (public information resource) |
| Description | Our study findings demonstrated that bereaved people face significant difficulties accessing appropriate support. Addressing these barriers we developed an evidence-based resource to help people find appropriate bereavement support. With a small ESRC IAA grant (Cardiff University) and working closely with partner organisations, the Grief Support Guide was developed using our research findings on the benefits of bereavement support and a service-mapping exercise. We conducted two consultation events: an online workshop with 33 professional and public stakeholders (n=33);, and an in-person focus group with a bereavement support group (n=9). The Grief Support Guide is hosted on the National Bereavement Alliance website - https://nationalbereavementalliance.org.uk/support/ The Guide provides information on the variety of bereavement support that is available in the UK, from self-help resources and helplines to peer support groups and grief counselling. It describes the key features of each support type, how it can help and how to access this support. The Guide also includes details of support for specific groups of bereaved people, such as widow(er)s, children, cultural and faith groups and people bereaved by particular types of death. |
| Type | Products with applications outside of medicine |
| Current Stage Of Development | Small-scale adoption |
| Year Development Stage Completed | 2023 |
| Development Status | Closed |
| Impact | The Guide went live in early September and since then we have been promoting via professional networks and contacts, webinars and presentations and a public launch event with the Good Grief Festival in December 23 attended by over 200 people. The landing page of the Guide has been viewed over 4600 times now with positive feedback from different stakeholders on how they are using it. Examples of uptake; Inclusion in professional resources pages e.g. RCGPs End of Life Tool Kit, the Crematoria Society, Medical Examiner Wales Reported use by primary and secondary care services, Death Cafes, carer, cancer, palliative care and bereavement organisations. Really pleased to learn that its been used in a few key professional resources pages listed here, including the RCGP eol toolkit, as well as in some primary and care services and voluntary sector organisations We haven't had many people fill in our feedback survey which is perhaps not surprising, but the responses that we have had have been very positive, suggesting the Guide is working as we hoped it would. |
| URL | http://www.nationalbereavementalliance.org.uk/support |
| Description | BBC Online interview |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Lucy Selman was interviewed about the research by BBC Bristol for an online feature. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.bbc.com/news/uk-england-bristol-60466718 |
| Description | BBC Points West TV interview |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Lucy Selman was interviewed about the research by BBC Points West, which featured the story on 22 Feb 2022. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.bbc.co.uk/iplayer/episode/m0014t24/points-west-evening-news-22022022 |
| Description | BeCovid - ITV London Coverage |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | ITV London coverage of BeCovid results, 15th September 2021 |
| Year(s) Of Engagement Activity | 2021 |
| Description | Bereavement Care: Equipping primary care clinicians with tools to improve quality. Workshop at London WONCA/RGCP, 30 June 2022 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Selman contributed to a workshop on bereavement care for GPs and GP trainees at the World Organization of Family Doctors (WONCA)/Royal College of General Physicians conference in London with colleagues Knights D, Barnes E and Millington-Sanders C. The aim was to educate and empower the audience and provide time for reflection on their own experiences of grief as well as how to support bereaved patients. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.woncaeurope.org/file/b4121c25-7b53-4038-a97c-341030afd915/WONCA-Europe-2022-Book-of-Abst... |
| Description | Blog on BeCovid research findings for CRUSE blogsite |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Summarises key findings from BeCovid study to date |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.cruse.org.uk/about/blog/grief-during-the-pandemic/ |
| Description | Blog published by Bevan Foundation discussing pre-print results, UK Commission launch and Bereavement Framework for Wales |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Blog published by Bevan Foundation discussing pre-print results, UK Commission launch and Bereavement Framework for Wales |
| Year(s) Of Engagement Activity | 2021 |
| Description | Coverage of interim survey findings on ITV news at Ten. |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Dr Emily Harrop & Dr Lucy Selman were involved in an interview and press release on interim results from bereavement survey resulting in coverage on ITV news at ten and online coverage. Survey participation boosted as a result of coverage |
| Year(s) Of Engagement Activity | 2020 |
| Description | Covid Aid Podcast discussing Bereavement Research |
| 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 | Interview with CovidAid for podcast discussing bereavement research and findings |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://covidaidcharity.org/advice-and-information/bereavement-and-end-of-life-care-during-the-covid... |
| Description | Department of Health and Social Care meetings |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | As part of involvement in Commission, Dr Emily Harrop attends monthly meetings with the bereavement team at the Department of Health and Social Care, where Dr Harrop presented initial study findings and contributed to discussions around research priorities and the work of Commission |
| Year(s) Of Engagement Activity | 2021 |
| Description | Discussion of bereavement resource in a local bereavement support group |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Workshop with bereaved members of the public to obtain feedback on a draft of the BeSupported bereavement support resource |
| Year(s) Of Engagement Activity | 2023 |
| Description | Discussion of bereavement resource with bereavement support professionals |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Workshop with professionals working in the bereavement sector to obtain feedback on a draft of the BeSupported bereavement support resource |
| Year(s) Of Engagement Activity | 2023 |
| Description | Dissemination of infographic summary (BeCovid) to study participants |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | Lay summary of interim results sent to study participants |
| Year(s) Of Engagement Activity | 2021 |
| Description | Framework for Bereavement in Wales |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Third sector organisations |
| Results and Impact | Ongoing involvement of Dr Emily Harrop with Bereavement Framework oversight and steering group to develop the national framework for bereavement care in Wales, which builds on previous and current research projects |
| Year(s) Of Engagement Activity | 2021 |
| Description | Interviewed about research for piece by Refinery 29 on young people and bereavement |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Interviewed about bereavement experiences during Covid-19, specifically with regards to young people. Research findings reported in this piece |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.refinery29.com/en-gb/grief-uk-public-health-crisis |
| Description | Invited keynote: Experiences of bereavement during the COVID-19 pandemic and the development of Good Grief Festival, for Pandemic Grief: The Arts of Losing, Birkbeck College, 18 Nov 2022. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Lucy Selman was invited to give a plenary at an interdisciplinary closed group meeting at Birkbeck College on the topic of 'Pandemic Grief' where she presented research findings from the study. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.bbk.ac.uk/events/remote_event_view?id=34531 |
| Description | Invited presentation 'Grief and (dis)connectedness during Covid-19' at workshop 'Connecting in times of Covid', London 10th March 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Invited talk reporting results on social isolation, connectedness and memorialisation from survey of bereaved people. Public engagement workshop attended by c. 50 people with interactive audience and panel discussion on topic of connectedness and memorialisation relating to pandemic. Key learning points fed back following my talk related to unique nature of pandemic grief and need for remembrance opportunities. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.city.ac.uk/news-and-events/events/2022/march/connecting-in-the-time-of-covid |
| Description | Invited presentation. Grief and Bereavement During the Covid-19 Pandemic. International Academy of Law and Mental Health, XXXVII Congress, Lyon, France, 4 Jul 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Conference presentation of our research findings to an international, multi-disciplinary conference. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://img1.wsimg.com/blobby/go/c394b424-d915-4ee7-9aba-21b85ee2779c/03%3A07%20FINAL%20PROGRAM%20LY... |
| Description | Lunch and learn CPD session for all Wales palliative care professionals, 6th May 2021 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited to present interim findings to this first All Wales CPD session for palliative care professionals. Very engaging and positive discussion with reflection amongst audience members about relevance for own practice esp. supporting families immediately following the death |
| Year(s) Of Engagement Activity | 2021 |
| Description | Media coverage of BeCovid film |
| 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 | BBC Points-west media coverage of BeCovid film screening 'these four walls' https://www.bbc.co.uk/news/uk-england-bristol-61334386 . |
| Year(s) Of Engagement Activity | 2022 |
| Description | Media coverage of first pre-print/commission launch |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Press release reporting on pre-print results/ commission launch received extensive coverage-70 national and regional media reports. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Media coverage of new publication in the Guardian (Sept 23) |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Following a press-release on our latest study findings and publication on prolonged grief disorder during and beyond the pandemic, the Guardian published an extensive article on the results, thus widely disseminating to public audiences. Several members of the public contacted us after reading the piece commenting on how it had helped them to better understand their own loss experiences. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.theguardian.com/lifeandstyle/2023/sep/19/prolonged-grief-disorder-more-common-in-covid-l... |
| Description | Media coverage of second pre-print release from BeCovid study |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Coverage of research findings on end of life experiences |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.itv.com/news/london/2021-09-14/exclusive-covid-bereavement-crisis-as-thousands-endure-so... |
| Description | Media coverage of the survey following press release targeted at BAME media. |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Following press release issued by Marie Curie targeting BAME media outlets, media coverage for the Bereavement during Covid survey was picked up in: 1. https://www.miragenews.com/researchers-launch-first-study-into-covid-bereavement-among-bame-people/. 2. Australian online magazine based on press released issued by Marie Curie. 3. https://www.keepthefaith.co.uk/2020/10/11/researchers-launch-study-into-covid-bereavement-among-bame-people/ ; 4. https://theguideliverpool.com/the-first-study-into-covid-bereavement-among-bame-people-has-been-launched/ |
| Year(s) Of Engagement Activity | 2020 |
| Description | NBA monthly webinar presentation Oct 23 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation to National Bereavement Alliance webinar series to introduce new Grief Support Guide |
| Year(s) Of Engagement Activity | 2023 |
| Description | Panel Discussion to publicly launch Grief Support Guide |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Participation in panel discussion with colleagues at NBA and Good Grief Gang to promote the new Grief Support Guide. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Panel discussion for Good Grief Festival |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Dr Emily Harrop was on the panel to discuss bereavement and bereavement support following mass bereavement events, with relevance to Covid-19 bereavement. Other panel members included clinical director of bereavement charity, a chaplain, a member of the public bereaved by Covid and another academic. Dr Harrop's contribution was based on recent bereavement systematic reviews and preliminary data from bereavement survey. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Piece on 'heightened grief' in the Guardian and Sky News 'coping with grief' interview on Bereavement survey results. |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Co-PIs Emily Harrop & Lucy Selman were involved in the interview and press release on interim results from bereavement survey resulting in further coverage in Guardian and Sky News . Survey participation boosted as a result of coverage, and Good Grief Trust got in touch to ask if they could use some of our results in their Press Release and letter to media co-signed by us requesting increased bereavement support provision. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Plenary Presentation at 2nd UK international Bereavement Conference hosted by York St John University, online, 27th November |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Invited presentation to update on BeCovid research findings |
| Year(s) Of Engagement Activity | 2021 |
| Description | Plenary presentation of study results at Marie Curie Research Conference 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | We gave the following presentation relating to equity in access to bereavement support, drawing on results from our survey and interviews with bereaved people and our survey interviews with voluntary sector service providers Inequity in access to bereavement support: Perspectives and experiences of bereaved people and voluntary and community sector bereavement services in the UK There was good discussion and questions following the presentation |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.mariecurie.org.uk/research/annual-research-conference |
| Description | Plenary talk on BeCovid results at NHS Education for Scotland Bereavement Conference (24th November, online) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of research findings on EoL Care and bereavement support needs from BeCovid |
| Year(s) Of Engagement Activity | 2021 |
| Description | Poster Presentation at PRIME Online Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The following poster was presented describing study and reporting some preliminary data from first 140 participants; Torrens-Burton A, Goss S, Holland-Hart D, Longo M, Sivell S, Farnell D, Sutton E, Nelson A, Byrne A, Seddon K , Selman L, Harrop E, (and on behalf of the study steering group). Supporting people bereaved during Covid-19: a mixed methods study. Poster PRIME conference |
| Year(s) Of Engagement Activity | 2020 |
| Description | Presentation at 'Seth's Legacy' event hosted by Liverpool University Medical School |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of longitudinal BeCovid results on grieving during and beyond pandemic |
| Year(s) Of Engagement Activity | 2024 |
| Description | Presentation at 'The Big Conversation' event hosted by Aneurin Bevan University Health Board |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation on key findings of 2019 Bereavement Service Scoping Review and the new Framework for Bereavement Care in Wales |
| Year(s) Of Engagement Activity | 2024 |
| Description | Presentation at End-of-life Care and Bereavement in the Pandemic - event at Green Templeton College, University of Oxford |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Co-PI Lucy Selman presented at this event alongside Prof Keri Thomas (February 2021) |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.gtc.ox.ac.uk/academic/health-care/care-initiative/conversations-on-care-2020-21/end-of-l... |
| Description | Presentation at Launch event for UK Commission on Bereavement |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Dr Emily Harrop was invited to present the first pre-print results at the launch event for UK Commission on Bereavement, followed by a keynote address by Minister for Mental Health and statement released in media committing to addressing gaps and challenges highlighted in the research. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation at National Bereavement Alliance Webinar |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Co-PI Lucy Selman presented on the study and the launch of the survey of bereavement services (March 2021) |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation at National Bereavement Alliance Webinar 7th October |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Research update and new BeCovid findings on CYP bereavement |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation at National Bereavement Alliance monthly webinar |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Dr Emily Harrop gave feedback on preliminary findings from bereavement study to bereavement service providers and encourage ongoing support with recruitment. Several bereavement charities have been helping promote survey since this talk and there was very positive feedback in the 'chat'. The National Bereavement Service got in touch afterwards to tell us that they have used some of the findings in an article for the UK's leading employee benefit organisation in their efforts to encourage UK employers to ensure they have the right bereavement supporting in place for the employees. Macmillan have also told us that they have been using preliminary findings at their virtual loss grief and bereavement teaching sessions to highlight the challenges and impacts of Covid-19. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Presentation for Macmillan education webinar series |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of longitudinal study results on accessing bereavement support and development of BeSupported resource. Presentation hosted on education section of website to support CPD of Macmillan staff. Offered to help disseminate and link to BeSupported resource when ready |
| Year(s) Of Engagement Activity | 2023 |
| Description | Presentation of BeCovid results at NRPCPG, 13th Sept 2021 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of research findings on EoL Care and bereavement support needs from BeCovid |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation of BeCovid results to Royal College of Psychiatrists Wales Conference/CPD session (5th November 2021) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of research findings on EoL Care and bereavement support needs from BeCovid |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation of Wales Scoping review and BeCovid findings to Welsh UKBereavement Commission event (9th Dec 2021) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Third sector organisations |
| Results and Impact | Presentation of Wales scoping review and BeCovid findings on End of life and bereavement experiences during pandemic |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation of interim results to Palliative and End of Life Care Webinar, |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited presentation at National End of Life Care webinar series to present results of interim analysis of baseline survey |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation of key findings to UK Bereavement Commission round table event with faith leaders in UK, 18th Feb 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | We were asked to provide an overview of our research to this UK Commission event as a way of informing subsequent discussion around experiences and needs of different faith communities in the UK, with this discussion with around 30 representatives of different faith organisations then being used as evidence in the UK bereavement commission report and recommendations due later in the year. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to APM Junior Drs conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of research on pandemic bereavement to junior pall med doctors |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to C&V Gerontology team. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of results on end of life and acute settings during pandemic. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to COVID-19 (Clinical) ECHO Knowledge Network by Co-PI Lucy Selman |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | TBC |
| Year(s) Of Engagement Activity | 2020 |
| Description | Presentation to CRUSE volunteers. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of BeCovid results on pandemic bereavement experiences to help inform professional practices (e.g supporting bereaved relatives). Coordinator planning focused training sessions building on these findings |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to CRUSE volunteers. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of BeCovid results on pandemic bereavement experiences to help inform professional practices (e.g supporting bereaved relatives). Coordinator planning focused training sessions building on these findings. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to Cremation & Burial Communication & Education Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | Presentation of BeCovid results and work of UKCB to funeral and cremation professionals at their annual conference (21st June) |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to Marie Curie Bradford Hospice Specialist Palliative Care workshop |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Dr Emily Harrop was invited to discuss preliminary findings from bereavement survey at the hospice. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Presentation to Medical Examiners/Officers |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of BeCovid results on pandemic bereavement experiences to help inform professional practices (e.g supporting bereaved relatives). |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to UWE nursing students. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Undergraduate students |
| Results and Impact | Presentation of BeCovid results on pandemic bereavement experiences as part of student course on palliative and end of life care |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to Velindre Staff |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of results on end of life and acute settings during pandemic. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to Welsh Assembly Cross Party Group on Bereavement and Funeral |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Dr Emily Harrop was invited to discuss preliminary findings from the Bereavement survey, with suggestions made for increasing recruitment from BAME groups too. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Presentation to civil servants involved in UK Covid Inquiry on Prolonged Grief and pandemic |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | I was invited to give a talk to the civil servants involved in the UK Covid Inquiry on Prolonged Grief Disorder and how the pandemic may have contributed to worse grief experiences and outcomes for people bereaved at this time, as indicated in our study results. There was good discussion after the talk, with many reflecting on how their work with members of the public was suggestive of similar experiences, and comments that these findings and presentation would inform the work and considerations of the Inquiry. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Press release and media coverage of research findings |
| 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 | Media (as a channel to the public) |
| Results and Impact | Coverage of BeCovid research results following release of 5th pre-print https://www.bbc.co.uk/news/uk-england-bristol-60466718 |
| Year(s) Of Engagement Activity | 2022 |
| Description | Radio interview on Jambo Radio |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Dr Emily Harrop gave a joint radio interview with Marie Curie bereavement counsellor to discuss bereavement during COVID study and bereavement support provided by Marie Curie, with specific aim to try and increase participation amongst BAME groups. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Research Update on BeCovid results to Wales Cross Party Group on Funerals & Bereavement, Jan 20th 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Invited to give update on research findings to the Cross Party Group. Attended by approx. 20 people from funeral industry, bereavement charities and political parties. Interesting discussion followed relating to recommendations and how the group might support implementation of these in Wales. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Research presentation (by Lucy Selman) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of BeCovid study findings on equity in bereavement support to St Christopher's Hospice Event-Bereavement and Loss: Time for Change (June 23) |
| Year(s) Of Engagement Activity | 2023 |
| Description | Royal College of Physicians Update in Medicine |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | The RCP Update was to an audience of doctors from multiple specialties and focused on challenging areas of care and symptom control of patients towards the end of life being cared for in the acute setting. The intended outcome is to encourage greater understanding of the size of the end of life care population being cared for in acute, unscheduled care settings and to understand the care needs of those approaching the end of life in such settings and the importance of having palliative care teaching as part of the curriculum for doctors and other disciplines working in the acute setting. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Screening of short film based on research findings |
| 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 | Screening of short film based on BeCovid research findings at Good Grief Film festival held during Dying Matters Week- 'These Four Walls', Positive feeback in live chat from bereaved participants suggesting helpfulness and importance of the film to them. |
| Year(s) Of Engagement Activity | 2022 |
| Description | UK Commission Round Table Meeting |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Discussion of key issues to inform ongoing work and priorities of UKBC |
| Year(s) Of Engagement Activity | 2021 |
| Description | UK commission steering group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Dr Emily Harrop sits on the steering group for UK Commission on Bereavement and the evidence and research subgroup. This enables Bereavement study findings to be fed into Commission activity and is facilitating call to evidence. |
| Year(s) Of Engagement Activity | 2021 |
| Description | UKCB fringe event at Plaid Cymru conference |
| 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 | Panel member presenting on and discussing UKCB findings |
| Year(s) Of Engagement Activity | 2022 |
| Description | Workshop at UKCB report launch |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Facilitated two workshops on Improving Coordination and Collaboration in Bereavement Support at UK CB launch event. Attended by approx 10 per session. |
| Year(s) Of Engagement Activity | 2022 |