‘I think you just learnt as you went along’ – community clergy’s experiences of and attitudes towards caring for dying people:A pilot study

Background: Spiritual distress is a factor associated with poor outcomes at the end of life. Timely interventions, assessing and meeting spiritual distress, among patients are contained within nationally agreed guidance. Community clergy are well placed to work alongside healthcare professionals and chaplains to meet spiritual needs. Methods: Qualitative interviews among Christian clergy in two South East London boroughs and a self-completed Death Anxiety Questionnaire. Results: Fourteen clergy were interviewed from six Christian denominations. Participants described their experiences of ordination training and how helpful this had been for their work among Christian communities. Respondents were invited to discuss their knowledge of and involvement with palliative care services. Each interviewee also accounted for their understanding of pastoral care and spiritual care and considered whether any differences existed between these terms and, if so, what they were. Overall, clergy lacked any detailed formal training and had little experience of working with or relating to palliative care providers. Recommendations are made to improve educational opportunities and working relationships. Conclusions: Creating opportunities for clergy and palliative care staff to meet and undertake shared training will enhance the quality and level of care for people dying at home who wish to receive spiritual support. Enabling clergy to develop links with local palliative care centres will enhance confidence for both clergy and staff. </jats:sec

Bereavement during the COVID-19 pandemic in the UK: What do we know so far?

The Covid-19 pandemic has been a devastating mass bereavement event, with measures to control the virus leading to unprecedented changes to end-of-life and mourning practices. In this review we consider the research evidence on the experiences of people bereaved during the pandemic. We summarise key findings reported in the first five publications from our UK-based Bereavement during COVID-19 study, drawing comparisons with available evidence from other studies of bereavement during the pandemic. We summarise these findings across three main topics: experiences at the end of life and in early bereavement; coping and informal support during the pandemic; and access to bereavement and mental health services. The synthesis demonstrates 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 and usual coping mechanisms. We identified considerable needs for emotional, therapeutic and informal support among bereaved people, compounded by significant difficulties in receiving and accessing such support. We provide evidence-based recommendations for improving people’s experiences of bereavement and access to support at all levels

Developing a typology of models of palliative care delivery in prisons in high-income countries:protocol for a scoping review with narrative synthesis

Introduction A combination of punitive sentencing practices within ageing populations, compounded by the health challenges faced by people in prison, means that dedicated palliative care provision within prisons is a pressing requirement. However, evidence about exactly how quality palliative and end-of-life care is delivered in this environment remains sparse. This review aims to develop a typology of models of palliative and end-of-life care delivery within prisons in high-income countries to inform service development and policy. Methods and analysis We will conduct a scoping review of published studies and grey literature, following the Arksey and O'Malley framework. We will report data on models of palliative and end-of-life care delivery in prisons in high-income countries. Searches will be undertaken in Medline, EMBASE, CINAHL, Social Sciences Citation Index and PsyINFO for all study types, published from 1 January 2000 to December 2021, and reference lists from key reviews and studies will be screened for additional references. We will also screen grey literature from within other high-income countries using a targeted search strategy. For published reports of original research, study quality and risk of bias will be assessed independently by two reviewers using the Mixed Methods Appraisal Tool. A narrative synthesis of the data will be undertaken, integrating the results of the quality assessment. Ethics and dissemination Approval by research ethics committee is not required since the review only includes published and publicly accessible data. We will publish our findings in a peer-reviewed journal as per Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 guidance. Protocol registration The final protocol was registered with the Research Registry on 26 November 2021 (www.researchregistry.com). Unique ID number: reviewregistry1260

Sadness, despair and anger when a patient dies alone from COVID-19:A thematic content analysis of Twitter data from bereaved family members and friends

Background: To inform clinical practice and policy, it is essential to understand the lived experience of health and social care policies, including restricted visitation policies towards the end of life. Aim: To explore the views and experiences of Twitter social media users who reported that a relative, friend or acquaintance died of COVID-19 without a family member/friend present. Design: Qualitative content analysis of English-language tweets. Data sources: Twitter data collected 7–20th April 2020. A bespoke software system harvested selected publicly-available tweets from the Twitter application programming interface. After filtering we hand-screened tweets to include only those referring to a relative, friend or acquaintance who died alone of COVID-19. Data were analysed using thematic content analysis. Results: 9328 tweets were hand-screened; 196 were included. Twitter users expressed sadness, despair, hopelessness and anger about their experience and loss. Saying goodbye via video-conferencing technology was viewed ambivalently. Clinicians’ presence during a death was little consolation. Anger, frustration and blame were directed at governments’ inaction/policies or the public. The sadness of not being able to say goodbye as wished was compounded by lack of social support and disrupted after-death rituals. Users expressed a sense of political neglect/mistreatment alongside calls for action. They also used the platform to reinforce public health messages, express condolences and pay tribute. Conclusion: Twitter was used for collective mourning and support and to promote public health messaging. End-of-life care providers should facilitate and optimise contact with loved ones, even when strict visitation policies are necessary, and provide proactive bereavement support

How are public engagement health festivals evaluated?:A systematic review with narrative synthesis

The evaluation of public engagement health festivals is of growing importance, but there has been no synthesis of its practice to date. We conducted a systematic review of evidence from the evaluation of health-related public engagement festivals published since 2000 to inform future evaluation. Primary study quality was assessed using the Mixed Methods Appraisal Tool. Extracted data were integrated using narrative synthesis, with evaluation methods compared with the Queen Mary University of London public engagement evaluation toolkit. 407 database records were screened; eight studies of varied methodological quality met the inclusion criteria. Evaluations frequently used questionnaires to collect mixed-methods data. Higher quality studies had specific evaluation aims, used a wider variety of evaluation methods and had independent evaluation teams. Evaluation sample profiles were often gender-biased and not ethnically representative. Patient involvement in event delivery supported learning and engagement. These findings and recommendations can help improve future evaluations. (Research Registry ID reviewregistry1021)

‘It’s like being in a war with an invisible enemy’: A document analysis of bereavement due to COVID-19 in UK newspapers

The COVID-19 pandemic has been followed intensely by the global news media, with deaths and bereavement a major focus. The media reflect and reinforce cultural conventions and sense-making, offering a lens which shapes personal experiences and attitudes. How COVID-19 bereavement is reported therefore has important societal implications. We aimed to explore the reportage and portrayal of COVID-19 related bereavement in the top seven most-read British online newspapers during two week-long periods in March and April 2020. We conducted a qualitative document analysis of all articles that described grief or bereavement after a death from COVID-19. Analysis of 55 articles was informed by critical discourse analysis and Terror Management Theory, which describes a psychological conflict arising between the realisation that death is inevitable and largely unpredictable and the human need for self-preservation. We identified three main narratives: (1) fear of an uncontrollable, unknown new virus and its uncertain consequences—associated with sensationalist language and a sense of helplessness and confusion; (2) managing uncertainty and fear via prediction of the future and calls for behaviour change, associated with use of war metaphors; and (3) mourning and loss narratives that paid respect to the deceased and gave voice to grief, associated with euphemistic or glorifying language (‘passed away’, ‘heroes’). Accounts of death and grief were largely homogenous, with bereavement due to COVID-19 presented as a series of tragedies, and there was limited practical advice about what to do if a loved one became seriously ill or died. Reporting reflected the tension between focusing on existential threat and the need to retreat from or attempt to control that threat. While the impact of this reporting on the public is unknown, a more nuanced approach is recommended to better support those bereaved by COVID-19

What elements of a systems approach to bereavement are most effective in times of mass bereavement?:A narrative systematic review with lessons for COVID-19

Background: The global COVID-19 pandemic has left health and social care systems facing the challenge of supporting large numbers of bereaved people in difficult and unprecedented social conditions. Previous reviews have not comprehensively synthesised the evidence on the response of health and social care systems to mass bereavement events. Aim: To synthesise the evidence regarding system-level responses to mass bereavement events, including natural and human-made disasters as well as pandemics, to inform service provision and policy during the COVID-19 pandemic and beyond. Design: A rapid systematic review was conducted, with narrative synthesis. The review protocol was registered prospectively (www.crd.york.ac.uk/prospero, CRD 42020180723). Data sources: MEDLINE, Global Health, PsycINFO and Scopus databases were searched for studies published between 2000 and 2020. Reference lists were screened for further relevant publications, and citation tracking was performed. Results: Six studies were included reporting on system responses to mass bereavement following human-made and natural disasters, involving a range of individual and group-based support initiatives. Positive impacts were reported, but study quality was generally low and reliant on data from retrospective evaluation designs. Key features of service delivery were identified: a proactive outreach approach, centrally organised but locally delivered interventions, event-specific professional competencies and an emphasis on psycho-educational content. Conclusion: Despite the limitations in the quantity and quality of the evidence base, consistent messages are identified for bereavement support provision during the pandemic. High quality primary studies are needed to ensure service improvement in the current crisis and to guide future disaster response efforts