The lived experiences of people bereaved by COVID-19

Recently the Government’s own report (2021) by the Health and Social Care and Science and Technology Committees acknowledged major deficiencies and fatal errors in the UK’s handling of the pandemic. The report has been gravely criticized for ignoring the families of those bereaved.

In the report, led by the University of Liverpool Management School's Professor Lynn Sudbury-Riley and Dr Benito Giordano, one of the respondents sums up:

“This is a death, that unless you’ve experienced it, it’s like no other death.  I lost my own Dad when I was 17.  He had a stroke.  I went to work.  I came back and he’d died.  And gosh, that was a shock to deal with.  But you come – you came to terms with that.  I don’t know if you’ll ever fully come to terms with this.  It’s just very different.  And unless you’ve been touched by it in that you’ve experienced it yourself – I don’t think people understand it, you know?” [Amy]

This research is hopefully one small step in helping people to understand.

Download the full report here: The Lived Experiences of People Bereaved by COVID-19 [PDF 2.2MB]

Research aim

To investigate the lived experiences of families bereaved by Covid-19.

Specific research questions:

RQ1: What were the experiences of families during their loved one’s final days?

RQ2: In the days and weeks following bereavement, what restrictions were there on normal bereavement and funeral rituals, and how did these make people feel?

RQ3: What factors are important to families bereaved by Covid-19?

Noteworthy, the findings go way beyond these three original research questions.

Methods

Pathographies (stories of illness experiences) were used to collect narratives of the experiences of 28 people who lost 30 relatives to COVID-19. Data collection took place during June 2021.  All narratives were audio recorded and later transcribed verbatim. We then conducted manual reflexive thematic analysis to identify core and sub-themes embedded in the data.

Findings

Findings are extensive, and fall into 11 interrelated themes. Our recommendations respond to these themes:

• Slow Responses by many people in authority (including GPs, NHS 111, and the ambulance service) caused delays in diagnosis, as did confusion around systems, processes and communications
• Being unable to accompany relatives to hospital even when they were considered extremely vulnerable, were particular sources of anguish for families
• Poor Communication is a constant theme. Narratives tell of extremely long periods of time (exceeding 24 hours in some cases) between a patient being admitted and the family receiving any communication about them. These communication delays continue throughout the whole period in which patients are in hospital, and tales of desperation in trying to ring general wards for news are commonplace
• The importance of digital communications channels to keep in contact with loved ones emerged as extremely important for many. There were, however, vulnerable patients who needed assistance with technology. Stories of kindness from individual healthcare staff emerged, where staff tried to help patients and families communicate. However, others often did not receive any help and therefore direct communications between families were cut
• A System in Chaos is apparent in many stories. Tales of conflicting information, incorrect information, and an overstretched system that at times was unable to cope are interwoven among so many narratives that it would be impossible to suggest anything but chaos and crisis
• Do-Not-Resuscitate (DNR) and Critical Care Decisions have become an increasingly controversial issue both in the UK and internationally during the pandemic. Narratives tell of a lack of explanation or consultation with families regarding DNR orders, changed DNR decisions when COVID-19 was diagnosed, and the seemingly ad hoc ways in which critical care decisions were made
• Feelings of helplessness and powerlessness experienced due to a lack of information, DNR decisions, frustrating systems, and being unable to visit or even communicate with loved ones, particularly at end of life, were major causes of families feeling totally helpless. Perceptions of a striking power imbalance emerged between the all-powerful system and the completely helpless patient and their family
• COVID-19 deaths are different in many ways, and death in a pandemic brings particular issues that are absent during ‘normal times’. Visiting restrictions mean people were forced to say goodbye via video or telephone, and many patients died without their families being with them. Many felt a COVID-19 death was not dignified.  Lockdown and social distancing regulations caused issues with the practicalities of registering a death and the official business that has to be completed. Attitudes among COVID-19 deniers make many bereaved families feel worse. That the pandemic permeates every aspect of life, together with a sense of collective grief, makes bereavement more difficult, too
• Rituals and mourning practices, which serve to facilitate the grieving process and support the healing process, were restricted or denied due to the pandemic. Being unable to view or dress the body, have funeral cars, or touch and carry the coffin caused extra sorrow. Severe restrictions on the numbers attending funerals, being unable to hold a wake, and social isolation when newly bereaved added to the difficulties associated with grief
• Inadequate and insufficient counselling and mental health support services became apparent. Long waiting lists and distressing stories about grief impacting wellbeing are commonplace.
• Anger and blame are clear throughout many narratives. Some of this is directed at NHS policies and practices, though many families were keen to stress they do not blame the hospital frontline staff. Overwhelming anger is directed at Government decisions
• The Public Inquiry, due in spring 2022, is incredibly important to the bereaved. Families want transparency, the truth, full disclosure, and public awareness. However, many are sceptic and concerned (the Hillsborough Inquiry was mentioned several times). Most of all, these people want change so that in the future no one else has to endure the lived experiences of these families.

Download the full report here: The Lived Experiences of People Bereaved by COVID-19 [PDF 2.2MB]