Grief during the pandemic
What have been the major challenges of being bereaved during the COVID-19 pandemic? New UK research reports the difficult experiences which have affected so many
The challenges of being bereaved during the pandemic are often described in the media, yet research evidence is needed to help bring about changes in policy to better support bereaved people.
Dr Lucy Selman at the University of Bristol and Dr Emily Harrop at Cardiff University are leading a national study of end-of-life and bereavement experiences and support needs during the COVID-19 pandemic. Funded by the Economic and Social Research Council, the study shines a light on the experiences of people bereaved during the pandemic in the UK. 711 people bereaved of any cause between 16 March 2020 and 2 January 2021 completed a survey, with some also speaking to a researcher about their experiences.
Here, Lucy and Emily summarise some of the main findings of the research so far.
Experiences before a loved one died
There was wide variation in overall experiences of end-of-life care, with some bereaved people reporting poor experiences. For example, while 21.8% reported they were always involved in decision about the care of their loved one, the same proportion reported that they were never involved; 32.3% reported that they were fully informed about the approaching death while 17.7% said they were not at all informed. Only half of participants knew the contact details for the professional responsible for their loved one’s care, while a third felt they were not supported by professionals immediately after the death.
Where people died affects their experience
Certain groups were more at risk of poor experiences, reflecting the particular impact of the pandemic on health and social care settings. Where the person had died in hospital or a care home, it was more likely that the bereaved person had been unable to visit them prior to death or say goodbye as wanted and had limited contact with them in last days of life. Overall, deaths in a hospice or at home were associated with better experiences, including being more likely to have been involved in care decisions and feel well supported by healthcare professionals after the death.
Covid deaths are particularly challenging
Deaths due to COVID-19 were associated with particular challenges, including being less likely to have been involved in care decisions and feel well supported by healthcare professionals after the death, and more likely to have been unable to say goodbye, feel socially isolated and lonely, and have limited contact with other relatives and friends.
Partners have suffered isolation and loneliness
Bereaved partners or parents were more likely to report knowing the contact details for the responsible care professional, being able to visit and given bereavement support information. But being a bereaved partner strongly increased the chances of social isolation and loneliness, reflecting the distress caused by losing a life partner during the pandemic when social networks have been so disrupted.
The emotional and psychological consequences of these experiences, and their impacts on the grieving process, were described in survey participants’ written comments:
It was brutal. It still is, as I feel the grieving process is so much worse now due to isolation and lack of contact and the trauma of [my husband’s] sudden death and not having any time with him. I tell people that unless you have lost someone you love so much suddenly, during this pandemic, you can never understand the feelings of hopelessness, despair, sadness – so much was ripped away from me and my children.
High-level needs for emotional support were identified among bereaved people, but two thirds of participants had not yet sought support from bereavement services (59%) or their GP (60%). 51% reported high or severe vulnerability in their grief; among these, 74% were not accessing bereavement or mental-health services. Sadly, of participants who had sought such support, over half experienced difficulties accessing it. Barriers to accessing support included limited availability, lack of appropriate support, discomfort asking for help, and not knowing how to access services.
Getting help from family and friends has been difficult
39% 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 made people feel even more isolated:
COVID-19 lockdown has used up empathy normally available from friends, family. Also just normal social interactions had stopped so it felt unreal my father had died, there was no one to tell. It almost felt like an irrelevant secret because everyone was dealing with the lockdown.
This research shows just how much bereaved people have been through during the pandemic. To better support them as the pandemic continues, the study team recommends:
- Prioritising compassionate, regular communication with relatives and contact with loved ones before a death
- Clear and consistent national guidance on hospital, hospice and care home visiting to ensure equity and support staff
- Investment in national and regional bereavement services, especially in areas with long waiting lists
- Bereavement services aim to provide safe ways to access face-to-face individual and group bereavement support as well as online and telephone support. Support needs to be culturally competent and tailored to the pandemic context.
- Better information about and signposting to bereavement support of different kinds. GPs and other primary care providers should be better resourced to signpost bereaved patients to appropriate support.
- More help with loneliness and isolation, including flexible support bubble arrangements for the recently bereaved when lockdown restrictions are in place.
- Educational and societal initiatives to improve how, as a society, we communicate and support people experiencing death, dying and bereavement.
To tell your story and influence bereavement policy in the UK, please consider taking part in the UK Commission on Bereavement’s call for evidence, open until 31st December.