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).

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.