'Sadly I think we are sort of still quite white, middle-class really' - Inequities in access to bereavement support: Findings from a mixed methods study.

BACKGROUND: Voluntary and community sector bereavement services are central to bereavement support in the UK. AIM: To determine service providers' perspectives on access to their support before and during the COVID-19 pandemic. DESIGN: Mixed methods study using an explanatory sequential design: (1) Cross-sectional online survey of UK bereavement services; (2) Qualitative interviews with staff and volunteers at selected services. SETTINGS/PARTICIPANTS: 147 services participated in the survey; 24 interviews were conducted across 14 services. RESULTS: 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. During the pandemic outreach activities were sometimes deprioritised; however, increased collaboration was also reported. Online provision improved access but excluded some. Positive interventions to increase equity included collecting client demographic data; improving outreach, language accessibility and staff representation; supporting other professionals to provide bereavement support; local collaboration and co-production. CONCLUSIONS: Service providers report inequities in access to bereavement support. Attention needs to be paid to identifying, assessing and meeting unmet needs for appropriate bereavement support. Identified positive interventions can inform service provision and research.

Bereavement during COVID-19: findings from a UK-wide online survey on the use and perceived helpfulness of informal and formal support during the pandemic

IntroductionMillions became bereaved during the pandemic, with many facing challenges accessing support.AimsTo describe the use and helpfulness of different types of support in a cohort of people bereaved during the pandemic in the UK.MethodsA longitudinal survey of people bereaved during the pandemic over four time points. At 7- and 13-months post-bereavement (T2 and T3), participants rated the helpfulness of support used and described how they had been helped by this support.Results420 participants completed at least one follow-up survey (T2, T3 or both). Most respondents were female (88.3%) and had lost a parent (57.6%) or partner (24.3%), with 3.3% from a minoritised ethnic background. Support from family and friends, reported by 89.3% of participants, was rated as ‘quite helpful' (mean rating 4.3 out of 5), and included help with practical tasks, expressing feelings/sharing grief, remembering, feeling cared for and less isolated. The most commonly used form of other support was 1:1 support (e.g. counselling), used by 40.5% of participants, with an average helpfulness rating of 4.1, helping participants feel listened to and process their grief. Online community support, used by 31.0% of participants, was also rated ‘quite helpful' (3.9), enabling sharing with similar others, feeling understood and less alone. Informal and formal bereavement groups were rated as similarly helpful (4.2) while helplines and specialist mental health support were slightly less helpful (3.6) (used by 9.3%, 4.8%, 7.1% and 4.5% of participants, respectively).ConclusionsResults demonstrate the perceived benefits and helpfulness of different forms of bereavement support used during the pandemic.ImpactThese findings highlight the value of informal as well as formal support, particularly bereavement counselling. Policy makers must attend to the foundational and second tiers of the public health model of bereavement support, supporting communities as well as services.

Grieving during COVID-19: exploring the lived experiences of people bereaved during the first two waves of the pandemic

IntroductionThe COVID-19 pandemic has had a huge impact on all aspects of life. The high number of deaths and bereavements increased demand on already stretched services, whilst the unique circumstances caused by enforced social distancing meant that people bereaved at this time faced many additional challenges and potentially problematic grief trajectories.AimsTo explore in depth people's lived experiences of bereavement during the Covid-19 pandemic, their adaptation and coping during this time, and the effect of informal and formal sources of bereavement support .MethodsSemi-structured longitudinal telephone interviews were conducted with people bereaved during the first 10 months of the pandemic (March to December 2020), purposively sampled from a cohort of survey participants. Interview transcripts were analysed thematically.Results24 participants (19 female;5 men) took part in a first interview and 15 in a follow up interview, approximately four months later. Five major themes were identified: End of life experiences;Funerals and memorialisation;Grieving and psychological impacts;Coping and adaptation and Sources of support. Many challenges relating to the pandemic context were identified, including restrictions to end of life and memorialisation arrangements, dealing with personal affairs, and lack of support. Such experiences negatively impacted individual grieving and wellbeing, in particular feelings of isolation and guilt surrounding lack of contact with the deceased. Participants experienced difficulties accessing services, and sometimes received support that was not appropriate for their particular situations and needs. Despite these difficulties, some people demonstrated remarkable resilience, and ability to cope and find meaning.ConclusionsPeople bereaved in the COVID-19 pandemic have navigated grief and bereavement through exceptionally challenging circumstances, often lacking the informal and formal support needed to help them cope.ImpactThese insights can be used to help improve the care and support provided to bereaved people throughout their bereavement journeys.

Factors Associated With Higher Levels of Grief and Support Needs Among People Bereaved During the Pandemic: Results from a National Online Survey.

We identified factors associated with higher levels of grief and support needs among 711 people bereaved during the COVID-19 pandemic in the UK (deaths 16 March 2020-2 January 2021). An online survey assessed grief using the Adult Attitude to Grief (AAG) scale, which calculates an overall index of vulnerability (IOV) (range 0-36), and practical and emotional support needs in 13 domains. Participants' mean age was 49.5 (SD 12.9); 628 (88.6%) female. Mean age of deceased 72.2 (SD 16.1). 311 (43.8%) deaths were from confirmed/suspected COVID-19. High overall levels of grief and support needs were observed; 28.2% exhibited severe vulnerability (index of vulnerability ≥24). Grief and support needs were higher for close relationships with the deceased (vs. more distant) and reported social isolation and loneliness (p < 0.001), and lower when age of deceased was above 40-50. Other associated factors were place of death and health professional support post-death (p < 0.05).

'It was brutal. It still is': a qualitative analysis of the challenges of bereavement during the COVID-19 pandemic reported in two national surveys.

Background: The COVID-19 pandemic has been a devastating, mass bereavement event characterised by high levels of disruption to end-of-life, grieving and coping processes. Quantitative evidence is emerging on the effects of the pandemic on grief outcomes, but rich qualitative evidence on the lived experiences of people bereaved during these times is lacking. Methods: We analysed qualitative data from two independent UK-wide online surveys to describe the experiences of 881 people bereaved during the pandemic. We analysed the data in two phases, conducting an inductive thematic analysis and then applying Stroebe and Schut's Dual Process Model (DPM) and concepts of loss-oriented and restoration-oriented coping (1999; 2010) as an analytic lens to further contextualise and interpret the data. Results: We identified six main themes: troubled deaths; mourning, memorialisation and death administration; mass bereavement, the media and the ongoing threat of the pandemic; grieving and coping; work and employment; and support from the health and social care system. Examples of loss-oriented stressors included being unable to visit and say goodbye at the end of life and restricted funeral and memorialisation practices. Associated reactions were feelings of guilt, anger, and problems accepting the death and beginning to grieve. Examples of restoration-oriented stressors and reactions were severely curtailed support-systems and social/recreational activities, which impacted people's ability to cope. Conclusion: Study results demonstrate the exceptionally difficult sets of experiences associated with pandemic bereavement, and the utility of the DPM for conceptualising these additional challenges and their impacts on grieving. Our analysis builds and expands on previous use of the DPM in explicating the impact of the pandemic on bereavement. We make recommendations for statutory, private and third sector organisations for improving the experiences of people bereaved during and following this and future pandemics.

Parental perspectives on the grief and support needs of children and young people bereaved during the COVID-19 pandemic: qualitative findings from a national survey.

BACKGROUND: During the COVID-19 pandemic, many children and young people have experienced the death of close family members, whilst also facing unprecedented disruption to their lives. This study aimed to investigate the experiences and support needs of bereaved children and young people from the perspective of their parents and guardians. METHODS: We analysed cross-sectional qualitative free-text data from a survey of adults bereaved in the UK during the pandemic. Participants were recruited via media, social media, national associations and community/charitable organisations. Thematic analysis was conducted on free text data collected from parent/guardian participants in response to a survey question on the bereavement experiences and support needs of their children. RESULTS: Free-text data from 104 parent/guardian participants was included. Three main themes were identified: the pandemic-related challenges and struggles experienced by children and young people; family support and coping; and support from schools and services. Pandemic-challenges include the impacts of being separated from the relative prior to their death, isolation from peers and other family members, and disruption to daily routines and wider support networks. Examples were given of effective family coping and communication, but also of difficulties relating to parental grief and children's existing mental health problems. Schools and bereavement organisations' provision of specialist support was valued, but there was evidence of unmet need, with some participants reporting a lack of access to specialist grief or mental health support. CONCLUSION: Children and young people have faced additional strains and challenges associated with pandemic bereavement. We recommend resources and initiatives that facilitate supportive communication within family and school settings, adequate resourcing of school and community-based specialist bereavement/mental health services, and increased information and signposting to the support that is available.

The impact of the Covid-19 pandemic on bereavement support services in the UK: findings from a cross-sectional online survey and qualitative case studies

BackgroundThe Covid-19 pandemic has caused c.131,000 excess deaths in the UK to date. During the pandemic, voluntary and community sector (VCS) bereavement services have played a central role in supporting the bereaved. We describe the impact on and response of these services to inform service development and policy.MethodsMixed-methods explanatory sequential design in two phases: (1) Online survey (March-May 2021) of VCS bereavement services in the UK, disseminated via national organisations, networks and social media;(2) Qualitative semi-structured telephone interviews with staff/volunteers at case study VCS bereavement services (June-December 2021). Interviews explored challenges/innovation in bereavement support during the pandemic, with transcripts analysed using thematic analysis.Results147 organisations participated in the survey;53% were regional, 16% UK-wide. 36% were hospice/palliative care services, 15% national bereavement charities/Non-Governmental Organisations;12% local bereavement charities. During this period of the pandemic referrals increased for 46% of organisations and decreased for 35%. 78.2% changed services and 51.7% introduced new services (such as online/telephone support). 24 people across 14 organisations were interviewed. Challenges encountered included: rapidly setting up online/telephone provision and consequent changes to the therapeutic encounter;developing new policies/procedures;coping with fluctuating demand and clients’ complex grief responses;supporting staff/volunteers working from home;and a loss of funding. Nevertheless, innovation and positive impacts were reported including: modernisation of services;expanding access for some groups (younger people, men, rural communities);increased cohesion amongst staff;and instigation of local collaborations.ConclusionsUK bereavement services rapidly transformed during the pandemic, despite significant challenges. Important lessons have been learned and providers generally advocate a blended approach for future provision of bereavement support. To ensure positive changes are retained, the experiences and acceptability of new/adapted services among clients and staff require further investigation, while services’ ability to meet demand requires sustained or additional resources.

What a difference a systematic review makes

IntroductionSystematic reviews aim to identify, evaluate, and summarise all the evidence meeting pre-specified eligibility criteria for a given clinical question. However, they face criticisms including long completion timeframes and level of impact. Whilst systematic reviews represent a robust methodology, evidence synthesis must address the challenges of timeliness and impacting at pace on care delivery.AimsWe use the example of a rapidly conducted narrative systematic review on the challenge of supporting large numbers of bereaved people to demonstrate how evidence can be gathered at pace and impact quickly on palliative care practice and policy.MethodWe followed Palliative Care Evidence Review Service (PaCERS) methodology1 with narrative synthesis, developed to conduct rapid reviews requested by clinicians/clinical services. A systematic search was conducted on four databases and supplementary search methods were employed to identify additional papers.ResultsSix studies were included, reporting on system responses to man-made disasters and natural disasters. Through narrative synthesis we sought to draw consistent lessons from the available evidence. The review was completed in 10 weeks and rapidly published in a peer reviewed journal2 adding to the emergent Covid literature, informing a subsequent UK wide study and provided evidence in support of a national bereavement framework for Wales.ConclusionThe COVID-19 pandemic has resulted in unprecedented research worldwide. Our review highlighted common features for effective service delivery that can be identified for bereavement support beyond the pandemic, which will have a long-lasting impact.ImpactInformed the successful funding application and project design for: Supporting people bereaved during COVID–19: a mixed methods study of bereaved people’s experiences and the bereavement services supporting them.Informed steering group discussions for the new National Framework for Bereavement Care in WalesReview published July 2020, up to now 16 citations.Placed at the top 5% of all research outputs scored by Altmetric.References Mann M, Woodward A, Nelson A, Byrne A. Palliative care evidence review service (PaCERS): a knowledge transfer partnership. Health Research Policy and Systems 2019;17(1):100. doi:10.1186/s12961-019-0504-4 Harrop E, Mann M, Semedo L, Chao D, Selman LE, Byrne A. 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. Palliative Medicine, 2020;34(9):1165–1181. doi:10.1177/0269216320946273

‘There is nowhere to place the anger’: accounts of bereavement experiences during the COVID-19 pandemic

IntroductionThe Covid-19 pandemic has been a mass bereavement event, causing major disruption to end-of-life, grieving and coping processes. Based on their Dual Process Model (DPM), Stroebe and Schut have identified pandemic-specific risk factors for poor bereavement outcomes and categorised these in terms of disruptions to loss-oriented and restoration-oriented coping processes which grieving people naturally oscillate between. Loss-oriented coping involves focussing on one’s loved one and their death, while restoration-oriented coping involves continuing with daily life and distracting oneself from one’s grief.AimsTo explore and describe bereavement experiences during the pandemic, relating our findings to the constructs of the DPM.MethodTwo independent online surveys were disseminated UK-wide via social media platforms and community and charitable organisations. They captured end-of-life and bereavement experiences (to all causes of death) from March 2020 to January 2021. Free-text data were analysed thematically, using the DPM as an analytic lens.ResultsSix main themes were identified: troubled and traumatic deaths;disrupted mourning, memorialisation and difficulties in death-related administration;mass bereavement, media and societal responses and the ongoing threat of the virus;grieving and coping (alone and with others);workplace and employment difficulties;and accessing health and social care support. Examples of loss-oriented stressors were being unable to visit or say goodbye and restricted funeral and memorialisation practices, leading to guilt and anger. Restoration-oriented stressors included severely restricted social networks and support systems, which affected peoples’ ability to cope.ConclusionThese results highlight significant disruptions to end-of-life, death and mourning practices, as well as usual coping mechanisms and support systems, during the Covid-19 pandemic. The DPM provides a useful framework for conceptualizing the additional challenges associated with pandemic bereavement and their impact on grieving and mental health.ImpactRecommendations are made for statutory, private and third sector organisations for improving experiences of people bereaved during this and future pandemics.

Parents’ accounts of the grief experiences and support needs of children and young people bereaved during the COVID-19 pandemic: results from a UK-wide online survey

IntroductionMany children and young people have experienced the death of close family members during the Covid-19 pandemic, whilst also facing unprecedented disruption to their daily routines and support networks.AimsThis study investigated their bereavement experiences and support needs as described by their parents/guardians.MethodWe disseminated a UK-wide online survey through social media platforms and community/charitable organisations, capturing the grief experiences of adults bereaved during the pandemic. Parent/guardian free-text responses (N=106) to a question on their child(ren)’s support needs were analysed thematically.ResultsThree main themes were identified: the pandemic-related challenges and struggles experienced by children and young people;family support and coping;and support from schools and services. Pandemic specific challenges include the impacts of not being able to be with the relative prior to their death, isolation from peers and other family members, and disruption to daily routines and wider support networks. Examples were given of effective coping and grief-related communication within families, but some parents also described difficulties relating to their own grief and children’s pre-existing mental health problems. The important role of schools and bereavement organisations in providing specialist support was valued, but there was evidence of unmet need and difficulties accessing bereavement and mental health support.ConclusionChildren and young people have faced additional strains and challenges associated with pandemic bereavement, with some requiring specialist bereavement or mental health support.ImpactThis study provides insight into how children and young people experienced the death of a close family member during the pandemic. We recommend initiatives that facilitate open communication within family, peer and school settings, adequate resourcing of school and community-based specialist services, and increased information and signposting to support.

Limited recovery from post-acute sequelae of SARS-CoV-2 at 8 months in a prospective cohort.

In a longitudinal cohort, a significant proportion of patients had persistent symptoms 8 months after initial #COVID19 infection. There was no significant improvement in symptoms or health-related quality of life between 4- and 8-month assessments. https://bit.ly/2Wtb7IX.

Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic is a mass bereavement event which has profoundly disrupted grief experiences. Understanding support needs and access to support among people bereaved at this time is crucial to ensuring appropriate bereavement support infrastructure. AIM: To investigate grief experiences, support needs and use of formal and informal bereavement support among people bereaved during the pandemic. DESIGN: Baseline results from a longitudinal survey. Support needs and experiences of accessing support are reported using descriptive statistics and thematic analysis of free-text data. SETTING/PARTICIPANTS: 711 adults bereaved in the UK between March and December 2020, recruited via media, social media, national associations and community/charitable organisations. RESULTS: High-level needs for emotional support were identified. Most participants had not sought support from bereavement services (59%, n = 422) or their General-Practitioner (60%, n = 428). Of participants who had sought such support, over half experienced difficulties accessing bereavement services (56%, n = 149)/General-Practitioner support (52%, n = 135). About 51% reported high/severe vulnerability in grief; among these, 74% were not accessing bereavement or mental-health services. Barriers included limited availability, lack of appropriate support, discomfort asking for help and not knowing how to access services. About 39% (n = 279) experienced difficulties getting support from family/friends, including relational challenges, little face-to-face contact and disrupted collective mourning. The perceived uniqueness of pandemic bereavement and wider societal strains exacerbated their isolation. CONCLUSIONS: People bereaved during the pandemic have high levels of support needs alongside difficulties accessing support. We recommend increased provision and tailoring of bereavement services, improved information on support options and social/educational initiatives to bolster informal support and ameliorate isolation.

Cognitive deficits are associated with anosmia but not anxio-depressive symptoms in COVID-19

ObjectivesTo characterise cognitive performance and olfaction in recovered COVID-19 patients.MethodsPatients underwent cognitive, olfaction and mental health assessments 2 months after initial SARS-CoV-2 infection as part of the Sydney St. Vincent’s Hospital ADAPT study, a prospective cohort study. Cognition was assessed with the Cogstate computerised battery and expressed as a demographically-corrected composite z-score and clinically classified as impaired/borderline/unimpaired. Anxio-depressive symptoms were assessed with the Depression in the Medical ill scale-10 (DMI-10), the Somatic and Psychological HEalth Report-34 (SPHERE) Psych sub-scale, and the Impact of Events Scale-Revised (IESR) and reduced into single Principal Component explaining 80% of the variance. Olfaction was assessed with the NIH Toolbox Odor Identification test and expressed as demographically-corrected T-scores, and impaired/unimpaired. Disease severity was classified as mild (40%), moderate (50%) or hospitalised (10%).Results132 patients (mean age=46±15;40% women, median education=16 years, 10% Non-English-Speaking Background-NESB) were included. 17% had impaired cognition, 10% had borderline deficits, 25% has impaired olfaction. 25% had clinically elevated symptoms on the DMI-10, 13% on the IESR, and 35% on the SPHERE. Regression analyses showed that anxio-depression was not associated with cognitive performance (unadjusted p=.43;adjusted for sex & NESB p=.98) nor impaired/unimpaired status (unadjusted p=.50;adjusted for sex & NESB p=.78). Cognitively impaired patients were more likely to have impaired olfaction (p<.009). Results were independent of disease severity.ConclusionsCognitive impairment is common and not related to psychological factors, may occur independent of disease severity and is associated with anosmia. These point to direct brain effects of COVID-19.

Tuberculosis related disability: a systematic review and meta-analysis.

BACKGROUND: The sustainable development goals aim to improve health for all by 2030. They incorporate ambitious goals regarding tuberculosis (TB), which may be a significant cause of disability, yet to be quantified. Therefore, we aimed to quantify the prevalence and types of TB-related disabilities. METHODS: We performed a systematic review of TB-related disabilities. The pooled prevalence of disabilities was calculated using the inverse variance heterogeneity model. The maps of the proportions of common types of disabilities by country income level were created. RESULTS: We included a total of 131 studies (217,475 patients) that were conducted in 49 countries. The most common type of disabilities were mental health disorders (23.1%), respiratory impairment (20.7%), musculoskeletal impairment (17.1%), hearing impairment (14.5%), visual impairment (9.8%), renal impairment (5.7%), and neurological impairment (1.6%). The prevalence of respiratory impairment (61.2%) and mental health disorders (42.0%) was highest in low-income countries while neurological impairment was highest in lower middle-income countries (25.6%). Drug-resistant TB was associated with respiratory (58.7%), neurological (37.2%), and hearing impairments (25.0%) and mental health disorders (26.0%), respectively. CONCLUSIONS: TB-related disabilities were frequently reported. More uniform reporting tools for TB-related disability and further research to better quantify and mitigate it are urgently needed. PROSPERO REGISTRATION NUMBER: CRD42019147488.

Before the 2020 Pandemic: an observational study exploring public knowledge, attitudes, plans, and preferences towards death and end of life care in Wales.

BACKGROUND: Understanding public attitudes towards death and dying is important to inform public policies around End of Life Care (EoLC). We studied the public attitudes towards death and dying in Wales. METHODS: An online survey was conducted in 2018. Social media and the HealthWiseWales platform were used to recruit participants. Data were analysed using descriptive statistics and thematic analysis. RESULTS: 2,210 people participated. Loss of independence (84%), manner of death, and leaving their beloved behind were the biggest fears around death and dying. In terms of EoLC, participants sought timely access to care (84%) and being surrounded by loved ones (62%). Being at home was less of a priority (24%). Only 50% were familiar with Advance Care Planning (ACP). A lack of standard procedures as well as of support for the execution of plans and the ability to revisit those plans hindered uptake. The taboo around death conversations, the lack of opportunities and skills to initiate discussion, and personal fear and discomfort inhibited talking about death and dying. 72% felt that we do not talk enough about death and dying and advocated normalising talking by demystifying death with a positive approach. Health professionals could initiate and support this conversation, but this depended on communication skills and manageable workload pressure. Participants encouraged a public health approach and endorsed the use of: a) social media and other public platforms, b) formal education, c) formal and legal actions, and d) signposting and access to information. CONCLUSIONS: People are ready to talk about death and dying and COVID-19 has increased awareness. A combination of top-down and bottom-up initiatives across levels and settings can increase awareness, knowledge, and service-utilisation-drivers to support health professionals and people towards shared decisions which align with people's end of life wishes and preferences.

20 Developing symptom control guidance for COVID-19 patients who are deteriorating despite non-invasive ventilation (NIV) as their ceiling of treatment

BackgroundCOVID-19 positive patients often develop Type 1 respiratory failure requiring CPAP, meaning deteriorating patients are often alert, leading to a challenging end of life situation at the time of NIV discontinuation. The Palliative Care team were asked to help better manage symptoms for COVID-19 positive patients approaching the end of life, and specifically those patients having NIV support as their ceiling of treatment, who were deteriorating very rapidly despite this.MethodsA case note review was performed. Guidance was developed following rapid review of existing published guidance for NIV withdrawal and sedation for other comparable clinical situations, with adaptation using the experiential knowledge of the palliative care and respiratory teams in managing COVID-19 positive patients. Finally, to evaluate the guideline an online survey was distributed to respiratory ward staff following the ‘first wave’.ResultsA symptom control flowchart was developed and agreed for use in the health board specifically for managing the rapidly deteriorating patient with COVID-19 on NIV as their ceiling of treatment. This later formed part of the All Wales COVID-19 National Secondary Care Guidance website. The online survey drew 12 respondents. Following introduction of the guideline the proportion of respondents who felt symptoms were adequately controlled rose from 17% to 58%. Qualitative feedback demonstrated that despite the difficult circumstances, patients were treated with compassion and overall better symptom control was achieved. 91% of relevant staff felt comfortable with the medication doses recommended for symptom control.ConclusionsKey to the appropriate implementation of this guidance has been the support of the local palliative care team and a good working relationship with the respiratory teams. A collaborative approach facilitated the rapid development of guidance in response to a direct patient need. This flowchart has given the respiratory team guidance to support better end of life care and reduce distress for patients, families and staff.

6 End of life and bereavement experiences during the COVID-19 pandemic: Interim results from a national survey of bereaved people

BackgroundCOVID-19 represents a mass bereavement event, with 80,000+ excess UK deaths. The unprecedented clinical and social restrictions are potential risk factors for poor bereavement outcomes. This study investigates the bereavement experiences, support needs and support use of people bereaved during the pandemic.MethodsInterim findings from the first round of a mixed methods longitudinal survey of people bereaved in the UK since 16March 2020. The survey was disseminated via media, social media, national associations and community/charitable organisations. Grief was assessed using the Adult Attitude to Grief Scale.Results532 bereaved people participated (91% female). Place of death: hospital (55%), home (22%), care home (15%), hospice (5%);46% of deaths were confirmed/suspected COVID-19. Experiences of end of life care varied: 23% were ‘never’ involved in decisions about their loved one’s care, 36% felt ‘not at all’ supported by healthcare professionals after the death, 51% were not provided with information about bereavement support. Respondents reported high levels of problems specific to the pandemic bereavement context (e.g. 56% unable to visit prior to death, 67% social isolation and loneliness). Over half of participants demonstrated ‘severe’ (28%) or ‘high’ (24%) levels of vulnerability in grief, and support needs were high/fairly high in six psycho-emotional domains (51% to 62%). COVID-19 deaths were associated with higher levels of bereavement problems (p<0.05), grief vulnerability (p<0.05) and support needs (P< 0.001) compared to other causes of death. 21% of those with ‘severe’ vulnerability were accessing individual counselling, compared with 23% overall. Barriers to accessing professional support included long waiting lists, lack of appropriate support, feeling uncomfortable asking for/not knowing how to access help. 41% reported difficulties getting support from family/friends.ConclusionsPeople bereaved during the pandemic experience exceptionally difficult circumstances at the end of life and during bereavement, including unmet needs for social and professional support. We recommend improved communication with families at the end of life, enabling contact with patients as far as possible, and better support after a death. This includes increased information about and investment in bereavement support services as well as flexible ‘support bubble’ arrangements for the recently bereaved.

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.