LEVELS OF GRIEF, SUPPORT NEEDS AND RISK FACTORS AMONG PEOPLE BEREAVED DURING THE COVID-19 PANDEMIC: BASELINE RESULTS FROM A LONGITUDINAL UK ONLINE SURVEY

Background The COVID-19 pandemic has had a detrimental impact on millions of people's experiences of bereavement. Traumatic end-of-life experiences and disruptions to support networks increase chances of poor bereavement outcomes. Aim To examine grief and support needs, and identify associated risk factors. Methods Mixed-methods survey of people bereaved in the UK from March 2020-January 2021, disseminated via media, social media, national associations, community/charitable organisations. Practical and emotional support needs were assessed in 13 domains, and grief intensity using the Adult Attitude to Grief (AAG) scale, which calculates an overall index of vulnerability (IOV) (range 0-36). Results 711 participants, mean age 49.5 (SD 12.9);88.6% female;95.3% white. Mean age of deceased 72.2 (SD 16.1);58% died in hospital;44% from COVID-19. Mean IOV was 20.41 (95% CI = 20.06 to 20.77), i.e. high vulnerability in grief overall. 28.2% exhibited extreme levels of vulnerability (i.e., IOV ≥ 24). In six support domains, all relating to psycho- emotional support, 50% to 60% of respondents reported high/fairly high levels of need. Increased levels of perceived support from health professionals led to significantly (P < 0.001) lower levels of grief and support need (small/medium effect, P < 0.001). Bereaved participants who were socially isolated/lonely experienced higher levels of grief and support needs than those who were not (P < 0.001). Grief and support needs were much higher for close family members compared with other groups (P < 0.05). Levels of grief and support needs were slightly higher for COVID deaths compared with non-COVID (P < 0.01), although this was not significant in a mixed model. Conclusions People bereaved during the pandemic experience high levels of grief and emotional support needs, with social isolation/loneliness and death of a close family member particular risk factors. Healthcare professionals' support is associated with better bereavement experiences.

“Empty and Lost”: The Challenges of Being Bereaved During the COVID-19 Pandemic

Background/aims: The COVID-19 pandemic has resulted in millions of deaths worldwide, whilst also causing severe disruption to end-of-life, grieving and coping processes. We examine bereavement experiences during the pandemic and relate our findings to the constructs of lossoriented and restoration- oriented coping, described in Stroebe and Schut's Dual Process Model (DPM). Methods: Two independent UK-wide surveys were disseminated online, including via social media and community/charitable organizations. They captured adult experiences of bereavement (to all causes of death) from March 2020 to January 2021. Free-text data were analyzed thematically. Results: Free-text comments were provided by 881 participants. Six main themes were identified: troubled and traumatic deaths;disrupted mourning, memorialization and death administration;mass bereavement, media/societal responses and the ongoing threat of the virus;grieving and coping (alone and with others);workplace and employment difficulties;and accessing support via health and social care. Examples of loss-oriented stressors included being unable to visit or say goodbye, the sudden and traumatic nature of many deaths, and restricted funeral and memorialization practices. Reactions included feelings of guilt and anger, and problems accepting the death and starting to grieve. Examples of restoration-oriented stressors and reactions comprised stressful deathrelated administration and severely curtailed social networks, support systems and social/recreational activities, which impacted peoples' ability to cope. Conclusions: These results demonstrate the exceptionally difficult sets of experiences associated with pandemic bereavement, defined by significant disruption to end of life, death and mourning practices, as well as usual coping mechanisms and formal or informal bereavement support. The DPM provides a useful framework for conceptualizing the additional challenges associated with pandemic bereavement and their impact on grieving and mental health.

Grief, Support Needs and Associated Factors Among People Bereaved During the COVID-19 Pandemic: Baseline Results from a Longitudinal UK Online Survey

Background/aims: The COVID-19 pandemic has had a detrimental impact on millions of people's experiences of bereavement. Traumatic end-of-life experiences and disruptions to support networks increase chances of poor bereavement outcomes. We aimed to examine grief and support needs, and identify associated risk factors. Methods: Mixed-methods survey of people bereaved in the UK from Mar 2020-Jan 2021, disseminated via media, social media, national associations, community/charitable organisations. Practical and emotional support needs were assessed in 13 domains, and grief intensity using the Adult Attitude to Grief (AAG) scale, which calculates an overall index of vulnerability (IOV) (range 0-36). Results: 711 participants, mean age 49.5 (SD 12.9);88.6% female;95.3% white. Mean age of deceased 72.2 (SD 16.1);58% died in hospital;44% from COVID-19. Mean IOV was 20.41 (95% CI = 20.06 to 20.77), i.e., high vulnerability in grief overall. 28.2% exhibited extreme levels of vulnerability (i.e., IOV ≥ 24). In six support domains, all relating to psycho-emotional support, 50% to 60% of respondents reported high/fairly high levels of need. Increased levels of perceived support from health professionals led to significantly (P < 0.001) lower levels of grief and support need (small/medium effect, P < 0.001). Bereaved participants who were socially isolated/lonely experienced higher levels of grief and support needs than those who were not (P < 0.001). Grief and support needs were much higher for close family members compared with other groups (P < 0.05). Levels of grief and support needs were slightly higher for COVID-19 deaths compared with non- COVID-19 (P < 0.01), although this was not significant in a mixed model. Conclusions: People bereaved during the pandemic experience high levels of grief and emotional support needs, with social isolation/loneliness and death of a close family member particular risk factors. Healthcare professionals' support is associated with better bereavement experiences.

The Grief and Support Needs of Children and Young People Bereaved During the COVID-19 Pandemic: Parental Views From a UK National Survey

Background/aims: 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 bereavement experiences and support needs from the perspective of their parents or guardians. Methods: We analysed cross-sectional 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 parent/ guardian responses to a question on the bereavement experiences and support needs of their children. Results: Free-text responses from 106 participants were 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 specific 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 difficulties relating to parental grief and children's existing mental health problems. The important role of schools and bereavement organisations in providing specialist support was demonstrated, but there was evidence of unmet need and lack of access to specialist grief or mental health support. Conclusions: Children and young people have faced additional strains and challenges associated with pandemic bereavement. We recommend initiatives that facilitate open and supportive communication within family and school settings, adequate resourcing of school and community- based specialist services and increased information and signposting to the support that is available.

Risk factors associated with poorer experiences of end-of-life care and challenges in early bereavement: Results of a national online survey of people bereaved during the COVID-19 pandemic.

BACKGROUND: Experiences of end-of-life care and early bereavement during the COVID-19 pandemic are poorly understood. AIM: To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement, to inform clinical practice, policy and bereavement support. DESIGN: Online national survey of adults bereaved in the UK (deaths between 16 March 2020 and 2 January 2021), recruited via media, social media, national associations and organisations. SETTING/PARTICIPANTS: 711 participants, mean age 49.5 (SD 12.9, range 18-90). 628 (88.6%) were female. Mean age of the deceased was 72.2 (SD 16.1, range miscarriage to 102 years). 311 (43.8%) deaths were from confirmed/suspected COVID-19. RESULTS: Deaths in hospital/care home increased the likelihood of poorer experiences at the end of life; for example, being unable to visit or say goodbye as wanted (p < 0.001). COVID-19 was also associated with worse experiences before and after death; for example, feeling unsupported by healthcare professionals (p < 0.001), social isolation/loneliness (OR = 0.439; 95% CI: 0.261-0.739), and limited contact with relatives/friends (OR = 0.465; 95% CI: 0.254-0.852). Expected deaths were associated with a higher likelihood of positive end-of-life care experiences. The deceased being a partner or child also increased the likelihood of positive experiences, however being a bereaved partner strongly increased odds of social isolation/loneliness, for example, OR = 0.092 (95% CI: 0.028-0.297) partner versus distant family member. CONCLUSIONS: Four clear risk factors were found for poorer end-of-life care and pandemic-related challenges in bereavement: place, cause and expectedness of death, and relationship to the deceased.

End of life experiences during the COVID-19 pandemic: Results of a national survey of bereaved people

Background: From March 2020-March 2021 530,000+ people have died from COVID-19 in the EU, and 120,000+ in the UK. In addition, c.4.85 million in the region have died of other causes, leaving c.43.6 million people bereaved at a time of unprecedented social and clinical restrictions. We aimed to inform practice and policy by describing end of life experiences among people bereaved during the pandemic. Methods: National survey of people bereaved in the UK since March 2020, disseminated via media, social media, national associations, community/ charitable organisations. Results: Interim findings from the first 532 participants are reported (full results available by time of conference). 55% of deaths were in hospital;46% were caused by confirmed/suspected COVID-19. Respondents reported high levels of problems specific to the pandemic bereavement context: 56% were unable to visit their loved one prior to death, 59% had limited contact in last days of life, 67% were unable to say goodbye, 67% experienced social isolation and loneliness, 81% had limited contact with other relatives/friends. COVID-19 deaths were associated with higher levels of all these problems compared with other causes of death (all p < 0.05). Experiences of end of life care were variable: 23% were 'never' involved in decisions about their loved one's care, 17% were not at all informed about the approaching death, 36% felt not at all supported by healthcare professionals after the death, 51% were not provided with information about bereavement support. Conclusions: There is evidence of poor end of life care and challenging experiences among people bereaved during the pandemic. To reduce the trauma of negative death experiences, we recommend improved communication by healthcare professionals, with a known point and method of contact, family involvement in decision-making, enabling family visiting as far as possible, and better support after a death, including information about bereavement services.

The support needs and experiences of people bereaved in the uk during the COVID-19 pandemic: Baseline results from a mixed-methods longitudinal survey

Background: COVID-19 presents a mass bereavement event, causing over 120,000 deaths in the UK. Unprecedented infection control restrictions also mean that all people bereaved at this time experience high level disruption to end of life, mourning, grief and coping experiences. This study aims to investigate the grief experiences, support needs and use of bereavement support by people bereaved during the pandemic. Methods: A mixed method online survey of adults bereaved in UK since March 2020, disseminated via media, social media, national associations and community and charitable organisations. Grief was measured using the Adult Attitude to Grief Scale. Results: Interim findings from the first 532 participants are reported (full baseline results available by time of conference).46% of deaths were confirmed/suspected COVID-19 and 55% of deaths were in hospital. Over half of participants demonstrated 'severe' (28%) or 'high' (24%) levels of vulnerability in grief, as well as high/fairly high needs for support in six psycho-emotional domains (51- 62%). 21% of those with 'severe' vulnerability were accessing individual counselling support, compared with 23% overall. 59% of respondents had not tried to access support from bereavement services;of those who tried, 56% experienced difficulties. Barriers included long waiting lists, feeling uncomfortable asking for help, and lack of appropriate support/knowledge of how to access help. 41% also experienced difficulties getting support from family and friends, reporting issues such as a lack of understanding and struggling without in-person contact. Conclusions: Results suggest unmet needs for support and problems getting support from friends/family and bereavement services. We recommend increased public information about bereavement support options, increased provision of and investment in bereavement services and flexible 'support bubble' arrangements for those bereaved during 'lockdown' conditions.