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

Abstract

Background The 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. Methods A 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. Results At 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. Conclusion Results 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).

Covid-19: the impact of the pandemic and resulting support needs of children and young people

“…However, levels of death awareness are increasing and this has been attributed to amplified levels of consciousness and selfconsciousness in humans (Schumaker et al, 1991). Initial higher levels of death anxiety initially attributed to Covid-19 (Menzies & Menzies, 2020) are corroborated by subsequent empirical research, which illustrates the impact of social isolation and loneliness, resulting in poorer mental health outcomes in people with or without previous mental health problems (Menzies & Menzies, 2020;Harrop et al, 2023).…”

“…Papers written prior to Covid-19 and subsequent briefing papers from early in the pandemic indicated that lockdowns in the United Kingdom were associated with mental health problems across the population, including prolonged grief disorder, post-traumatic stress, loneliness, and death anxiety (Menzies & Menzies, 2020;Selman et al, 2020;Hards et al, 2021). More recent research from a longitudinal study illustrates higher levels of prolonged grief disorder compared with pre-pandemic levels, which were influenced by social isolation, loneliness in early bereavement, and the absence of long-term social support (Harrop et al, 2023). In addition, risks of abuse and safeguarding issues related to children and young people (CYP) were also highlighted due to 'the pressure cooker of family life' (Green, 2020).…”

“…Empirical research illustrates a variance in the perceptions of social support and resulting reported levels of support when someone died during the pandemic: coping mechanisms associated with difficult end-of-life experiences were worsened by restricted funeral practices and led to increased feelings of isolation and loneliness (Harrop et al, 2023). People with preexisting mental health problems also reported additional difficulties managing their condition due to pandemic lockdowns (Torrens-Burton et al, 2022).…”