Those bereaved during lockdown are more likely to experience prolonged grief disorder, study finds

The condition usually affects one in 10 people but jumped up to three in 10 among those bereaved during lockdown

“We were isolated for all of the two months he was ill and saw no one. His only sister was not able to visit him or attend the funeral as she lives over 400 miles away. I received messages, cards, etc. from over 100 people but only five people were able to attend the funeral. The limited contact and loneliness has continued as I now live on my own and most family and friends are many miles away.”

That’s the testimony from one participant in 2021 research from Cardiff University’s Marie Curie Palliative Care Research Centre and the University of Bristol, which found that two-thirds of those who were bereaved during the pandemic experienced social isolation and loneliness.

At the time, Dr Emily Harrop, from the Marie Curie Palliative Care Research Centre at Cardiff University made a call for the country to take lessons from the experience of mass bereavement during Covid-19, and The Bishop of London, the Rt Revd and Rt Hon Dame Sarah Mullally DBE, called on the public to share their grief story with the UK Commission on Bereavement.

A year later, the report shared by the UK Commission of Bereavement shared that there was an estimated 6.8 million bereavements between 2020 and 2021, with more than a quarter of adult respondents to the Commission’s consultation receiving no support from family and almost half receiving no support from friends following the bereavement.

Now, a new study from Cardiff and Bristol University has uncovered another consequence of Covid-19. The study surveyed 711 people bereaved in the UK during the first and second waves of the pandemic. The researchers followed up with the participants 13 and 25 months after they were bereaved, and what they found was that the rates of prolonged grief disorder were significantly higher than during pre-pandemic times.

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What is prolonged grief disorder?

In March 2022, prolonged grief disorder was the latest disorder to be added to the Diagnostic and Statistical Manual of Mental Disorders, following studies over decades which found that many people were experiencing persistent difficulties with grieving, which exceeded social, cultural, or religious expectations.

While grief is a natural response to bereavement, the symptoms do ease over time. But when it comes to prolonged grief disorder, the persistent grief affects everyday functioning, and does not ease the way that typical grief does.

Symptoms of prolonged grief disorder include:

• Identity disruption (such as feeling as though part of oneself has died).
• Marked sense of disbelief about the death.
• Avoidance of reminders that the person is dead.
• Intense emotional pain (such as anger, bitterness, sorrow) related to the death.
• Difficulty with reintegration (such as problems engaging with friends, pursuing interests, planning for the future).
• Emotional numbness (absence or marked reduction of emotional experience).
• Feeling that life is meaningless.
• Intense loneliness (feeling alone or detached from others).

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Prior to the pandemic, it was estimated that 10% of bereaved people experienced prolonged grief disorder. But, during the pandemic, the study found that this rose to more than 35% when the researchers followed up with participants 13 months after their bereavement, and 29% 25 months after the bereavement. What’s more, the research also found that people with lower levels of formal education were more likely to experience symptoms of prolonged grief disorder, which they believe suggests poor outcomes among those experiencing social disadvantage.

"We identified a number of factors strongly associated with an increased likelihood of experiencing prolonged grief disorder, including unexpected deaths, social isolation and loneliness in early bereavement, and a lack of social support over time,” said Dr Lucy Selman, associate professor from the Palliative and End of Life Care Research Group and the Centre for Academic Primary Care at the University of Bristol.

"Feeling well supported by healthcare professionals following the death was associated with reduced levels of prolonged grief symptoms – so the support that professionals provide around the time of the death makes an important difference to processing a bereavement."

Based on their findings, the team have now created a new Grief Support Guide, designed to support bereaved people by providing information on different types of bereavement support available in the UK.

With a look to the future, it’s hoped that this research will help us to better understand how mass-bereavement events can impact grieving and mental health, and what this means for bereavement policy, provision, and practice in the future.