Researchers from a leading end-of-life charity have looked to 9/11 and other mass death events for approaches to support people bereaved through COVID-19.
The team from the Marie Curie Palliative Care Research Centre in Cardiff and the University of Bristol, led by Dr Emily Harrop with senior authors Professor Anthony Byrne and Dr Lucy Selman, conducted a rapid review looking at which approaches were most effective in times of mass bereavement. The review identified six studies of bereavement support offered following manmade and natural disasters, from the 9/11 terror attacks to a support programme for Swedish survivors of the South East Asia Tsunami of 2004.
The review found that support was offered both for bereaved families and for non-bereaved victims experiencing other types of trauma such as post-traumatic stress disorder.
Findings highlight the importance of culturally sensitive approaches to bereavement support, in particular given the over-representation of BAME groups in COVID-19 death rates.
Jane Murray, Adult Bereavement Support Lead at the Marie Curie Hospice, West Midlands, said she has seen far more complex grief in people since the pandemic: "I am seeing some bereaved families and friends, who were unable to visit their loved ones at the height of the pandemic, struggling to believe that their relative has actually died,’ she said.
"I am also supporting a woman who begged to be sent photos of her husband in the chapel of rest, to fill in the gap in her memory where his last moments should be.
"Another person was so convinced their relative wasn’t dead that they accused me of helping them escape from the hospice to start a new life. Reliving the moment, a loved one dies is so important in processing grief, and without a visual reminder people can become stuck. At the time this reminded me of the people who continued searching for their loved ones who died in the 9/11 attack. Without closure it can be hard for some people to begin to process their grief.
"The pandemic has really laid bare how important it is for people to be with the ones they love at the very end. To see so many relatives struggling with symptoms such as anxiety, panic attacks and PTSD is heart-breaking. Complex grief such as this is can be challenging to treat, may last longer than ‘normal grief’ and is intensified by feelings of isolation during lockdown. It is my hope that as lockdown restrictions continue to ease, families will finally be able to acknowledge and progress with their grief."
Based on the evidence, the authors suggest that rather than waiting for people to be referred for support - as is usually the case - at times like this services need to seek out those who have been bereaved, in order to provide support at the earliest opportunities. Group-based support helped people feel connected, and specialist support should be available for people at high-risk of prolonged grief disorder.
Dr Harrop said: "The global COVID-19 pandemic has left health and social care systems facing the challenge of supporting large numbers of bereaved people in difficult and unprecedented social conditions.
"We hope that our conclusions from this review will allow already existing bereavement services to adapt their support to reflect our findings, including advertising services widely to enable access to support for those who need it.’
Dr Lucy Selman , Senior Research Fellow at the University of Bristol, commented: "Over a million people in the UK have died since mid-March, when social distancing restrictions were introduced, leaving millions of people bereaved. Many will have found bereavement during the pandemic hugely challenging, and support services have had to adapt quickly to a complex and changing situation.
"The recommendations from this review provide evidence-based guidance for policy makers and bereavement services, based on what we know from previous responses to mass bereavement events."
Dr Harrop and the Cardiff team will continue to collaborate with Dr Selman at the University of Bristol on a new project funded by the Economic and Social Research Council (ESRC) investigating people’s bereavement experiences during COVID-19 and the bereavement services supporting them. The study, which will include surveys and telephone interviews with bereaved people and service providers across the UK, begins in August 2020.
Marie Curie provides expert end-of-life care to people in their own homes, or in one of nine hospices across the UK, and also offers bereavement support through its Information and Support line.
Marie Curie Bereavement Services Coordinator, Angharad Burden, said: "We have seen a number of people get in touch with us who are grieving in isolation. They’ve told us that they wouldn’t normally feel the need to access support but being in lockdown means they have been unable to lean on their usual support networks for help.
“The pandemic is forcing everyone to confront death in ways we never could’ve comprehended just a few months ago, but we’re here, on the other end of the phone, to support anyone who needs us. I urge anyone who is struggling with any aspect of dying, death or bereavement to call our Support Line free on 0800 090 2309 or to visit mariecurie.org.uk/support.’
’ What elements of a systems’ approach to bereavement are most effective in times of mass bereavement? A narrative systematic review with lessons for COVID-19 ’ by Emily Harrop, Mala Mann, Lenira Semedo, Davina Chao, Lucy E Selman, Anthony Byrne in Palliative Medicine