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).

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.

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.