Prolonged grief during and beyond the pandemic: Factors associated with levels of grief in a four time-point longitudinal survey of people bereaved in the first year of the COVID-19 pandemic (preprint)

BackgroundThe COVID-19 pandemic has been a devastating and enduring mass-bereavement event, with uniquely difficult sets of circumstances experienced by people bereaved at this time. However, little is known about the long-term consequences of these experiences, including the prevalence of Prolonged Grief Disorder (PGD) and other conditions in pandemic-bereaved populations. MethodsA longitudinal survey of people bereaved in the UK between 16 March 2020 and 2 January 2021, with data collected at baseline (n=711), c. 8 (n=383), 13 (n=295) and 25 (n=185) months post- bereavement. Using measures of Prolonged Grief Disorder (PGD) (Traumatic Grief Inventory), grief vulnerability (Adult Attitude to Grief Scale), and social support (Inventory of Social Support), this analysis examines how participant characteristics, characteristics of the deceased and pandemic- related circumstances (e.g. restricted visiting, social isolation, social support) are associated with grief outcomes, with a focus on levels of PGD. ResultsAt baseline, 628 (88.6%) of participants were female, with a mean age of 49.5 (SD 12.9). 311 (43.8%) deaths were from confirmed/suspected COVID-19. Sample demographics were relatively stable across time points 34.6% of participants met the cut-off for indicated PGD at c. 13 months bereaved and 28.6% at final follow-up. Social isolation and loneliness in early bereavement and lack of social support over time strongly contributed to higher levels of PGD, whilst feeling well supported by healthcare professionals following the death was associated with reduced levels of PGD. Characteristics of the deceased most strongly associated with lower PGD scores, were a more distant relationship (e.g. death of a grandparent), an expected death and death occurring in a care- home. Participant characteristics associated with higher levels of PGD included low level of formal education and existence of medical conditions. ConclusionResults suggest higher than expected levels of PGD compared with pre-pandemic times, with important implications for bereavement policy, provision and practice now (e.g. strengthening of social and specialist support) and in preparedness for future pandemics and mass-bereavement events (e.g. guidance on infection control measures and rapid support responses).

Factors associated with higher levels of grief and support needs among people bereaved during the pandemic: Results from a national online survey (preprint)

BackgroundThe COVID-19 pandemic has affected millions of peoples experiences of bereavement. We aimed to identify risk factors for grief and support needs. MethodsOnline survey of people bereaved in the UK (deaths 16 March 2020-2 January 2021), recruited via media, social media, national associations/organisations. Grief was assessed using the Adult Attitude to Grief (AAG) scale, which calculates an overall index of vulnerability (IOV) (range 0-36). Practical and emotional support needs were assessed in 13 domains. Results711 participants, mean age 49.5 (SD 12.9, range 18-90). 628 (88.6%) were female. Mean age of the deceased 72.2 (SD 16.1). 311 (43.8%) deaths were from confirmed/suspected COVID-19. Mean IOV was 20.41 (95% CI = 20.06 to 20.77). 28.2% exhibited severe vulnerability (IOV [≥] 24). In six support domains relating to psycho-emotional support, 50% to 60% of respondents reported high/fairly high levels of need. Grief and support needs increased strongly for close relationships with the deceased (versus more distant) and with reported social isolation and loneliness (P < 0.001), whereas they reduced with age of the deceased above 40 to 50. Other risk factors were place of death and reduced support from health professionals after death (P < 0.05). ConclusionsHigh overall levels of vulnerability in grief and support needs were observed. Relationship with the deceased, age of the deceased, and social isolation and loneliness are potential indicators of those at risk of even higher vulnerability in grief and support needs. Healthcare professional support after death is associated with more positive bereavement outcomes.

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 (preprint)

BackgroundDuring 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. MethodsWe 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. ResultsFree-text data from 104 parent and grandparent 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-related 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 childrens 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. ConclusionChildren 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.

“It was brutal. It still is”: A qualitative analysis of the challenges of bereavement during the COVID-19 pandemic reported in two national surveys (preprint)

ABSTRACT The COVID-19 pandemic has been a devastating, mass bereavement event characterised by sudden unexpected deaths and high levels of disruption to end-of-life, grieving and coping processes, as well as social life more broadly. We analysed qualitative free-text data from two independent UK-wide online surveys to describe in depth the experiences of 881 people bereaved during the Covid-19 pandemic using. We analysed the data in two phases, conducting an inductive thematic analysis and then applying Stroebe and Schut’s Dual Process Model (DPM) (1999; 2010) as an analytic lens to further contextualise and interpret the data. The DPM identifies loss-oriented and restoration-oriented coping processes between which grieving people naturally oscillate. Loss-oriented coping involves coming to terms with the death and lost relationship, while restoration-oriented coping involves adapting to new ways of life. We identified six main themes: troubled deaths (guilt, anger and unanswered questions); mourning, memorialisation and death administration; mass bereavement, the media and the ongoing threat of the pandemic; grieving and coping (alone and with others); work and employment; and support from the health and social care system. 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 memorialisation practices. Associated reactions were feelings of guilt and anger, and problems accepting the death and starting to grieve. Examples of restoration-oriented stressors and reactions were stressful death-related administration and severely curtailed social networks, support systems and social/recreational activities, which impacted people’s ability to cope. Study results demonstrate the exceptionally difficult sets of experiences associated with pandemic bereavement, and the utility of the DPM for conceptualizing these additional challenges and their impacts on grieving. Our analysis builds and expands on previous use of the DPM (Stroebe and Schut, 2021) 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.

Place, cause and expectedness of death and relationship to the deceased are associated with poorer experiences of end-of-life care and challenges in early bereavement: Risk factors from an online survey of people bereaved during the COVID-19 pandemic (preprint)

ObjectivesTo identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement. DesignOnline open national survey of adults bereaved in the UK from 16 March 2020-5 January 2021, recruited via media, social media, national associations and organisations. SettingGeneral population, UK. Participants711 participants, mean age 49.5 (SD 12.9, range 18-90). 395 (55.6%) had experienced the death of a parent, 152 (21.4%) a partner. 628 (88.6%) were female and 33 (4.7%) from a minority ethnic background. The mean age of the person who died was 72.2 (SD 16.1, range miscarriage to 102 years). 311 (43.8%) deaths were from confirmed/suspected COVID-19, and 410 (57.8%) deaths occurred in hospital. Main outcome measuresEnd-of-life care experiences (six items, e.g. involvement in care decisions) and pandemic-related challenges before and after death (six items, e.g. unable to visit prior to death). ResultsDeaths in hospital/care home increased the likelihood of: unable to visit prior to death, unable to say goodbye as wanted, limited contact in last days of life (all P<0.001). Deaths in hospice/at home increased the likelihood of: involved in care decisions (P<0.001), well supported by healthcare professionals (HCPs) after the death (P=0.003). Hospice deaths increased the likelihood of being given bereavement support information, which was least likely for care home deaths (P<0.001). Hospital deaths decreased the likelihood of knowing the contact details for the responsible care professional (P=0.001). Bereavement due to COVID-19 decreased the likelihood of: involvement in care decisions (P<0.001), feeling well supported by HCPs after the death (P<0.001), and increased the likelihood of: being unable to say goodbye (OR=0.348; 95% CI: 0.2 to 0.605), social isolation and loneliness (OR=0.439; 95% CI: 0.261 to 0.739), limited contact with relatives/friends (OR=0.465; 95% CI: 0.254 to 0.852). Expected deaths were associated with higher likelihood of feeling involved, informed, and well supported by HCPs (all P<0.001). The deceased being a partner or child increased the likelihood of knowing the contact details for the responsible care professional (P=0.001), being able to visit (P<0.001) and given bereavement support information (P<0.001). Being a bereaved partner strongly increased odds of social isolation and loneliness, e.g. OR = 0.092 (95% CI: 0.028 to 0.297) partner versus distant family member. ConclusionsFour 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. O_TEXTBOXWhat is already known on this topic?O_LISince the start of the pandemic, over 20 million family members and friends have been bereaved due to COVID-19, with millions more bereaved due to other causes. C_LIO_LIBereavement of any cause during the COVID-19 pandemic is associated with specific challenges, including limited access to people before their death, pressure on health and social care providers, quarantining due to infection or exposure, lockdowns and social distancing. C_LIO_LIThere remains little evidence to inform optimal clinical practice, bereavement support and the policy response to COVID-19 as a mass bereavement event. C_LI What this study addsO_LIOur study highlights four risk factors for poorer end-of-life care and increased risk of pandemic-related challenges in early bereavement: place, cause and expectedness of death and relationship to the deceased. C_LIO_LICOVID-19 deaths, hospital and care home deaths and unexpected deaths were generally associated with poorer outcomes, while being a partner of the person who died (regardless of cause) and bereavement due to COVID-19 increased the odds of experiencing social isolation and loneliness in bereavement. C_LIO_LIThese factors should be taken into account in clinical practice, policy and bereavement support. C_LI C_TEXTBOX

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

BackgroundThe 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. AimTo investigate grief experiences, support needs and use of formal and informal bereavement support among people bereaved during the pandemic. DesignBaseline 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/Participants711 adults bereaved in the UK between March-December 2020, recruited via media, social media, national associations and community/charitable organisations. ResultsHigh-level needs for emotional support were identified. Most participants had not sought support from bereavement services (59%, n=422) or their GP (60%, n=428). Of participants who had sought such support, over half experienced difficulties accessing bereavement services (56%, n=149)/GP support (52%, n=135). 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. 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. ConclusionsPeople 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. Key statementsO_ST_ABSWhat is already known about the topic?C_ST_ABS- Features of pandemic bereavement, such as traumatic death experiences, exacerbate family distress and add to the complexity of grief. - In pre-pandemic times most people mainly relied on the informal support of friends and family to cope with their bereavement, but an estimated 40% required more formal therapeutic support from bereavement or mental health services. - Bereaved people experience difficulties getting the support that they need from bereavement services and their social networks. What this paper adds- Participants had high level needs for emotional support, especially dealing with/expressing feelings, with 51% experiencing high or severe vulnerability in grief; however, 74% of this group were not accessing formal bereavement service or mental health support. - Most participants had not tried to access bereavement services, for reasons such as lack of appropriate support, discomfort in asking for help and uncertainty of how to access services; of the 41% who tried, 56% experienced difficulties such as long waiting lists or ineligibility. - A substantial proportion of people (39%) reported difficulties accessing support from friends and family; reduced in-person contact affected the perceived quality of support and disrupted collective mourning practices, whilst the wider social difficulties of the pandemic compounded feelings of isolation. Implications for policy and practice- Further investment in the provision of tailored bereavement support is needed to meet the diverse needs and backgrounds of bereaved people, including support that is culturally and crisis/context competent, and group-based support for those with shared experiences and characteristics. - To raise awareness of support options, information on grief and bereavement services should be provided proactively following a death and made available in online and community settings, with GPs and other primary care providers better resourced to signpost to appropriate support. - Following compassionate communities approaches, expanded provision of informal community-based support and activities could help with isolation, whilst longer-term educational and societal initiatives are needed to bolster community support for people experiencing death, dying and bereavement.

Before The 2020 Pandemic: An Observational Study Exploring Public Knowledge, Attitudes, Plans, and Preferences Towards Death and End of Life Care in Wales (preprint)

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 bout 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 can 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.