‘It was brutal. It still is’: a qualitative analysis of the challenges of bereavement during the COVID-19 pandemic reported in two national surveys

The qualitative data that we analysed were collected in two national surveys

BeCovid: The Bereavement during Covid-19 study aimed to investigate the grief experiences, support needs and use of bereavement support by people bereaved during the pandemic by any cause of death. The study includes a longitudinal survey with three time points: baseline (28 August 2020 to 5 January 2021) and two follow-up surveys approximately 7 and 13 months after the death of the loved one. We report on the qualitative free-text data from the baseline survey.

COPE: The COPE study was a longitudinal mixed-methods study, which aims to understand the public’s experiences and responses to the COVID-19 pandemic and government policy during the first 12 months of the UK outbreak.^17,18 Three online surveys were conducted over a 12-month period: baseline in March/April 2020, 3-month follow-up in June/July 2020, and 12-month follow-up in March/April 2021. We report on qualitative data on bereavement experiences collected as part of an optional module in the 3-month follow-up survey (20 June to 20 July 2020).

Troubled deaths: guilt, anger and unanswered questions

The end of life and death of a relative or friend is often a difficult time; however, the pandemic has added significant complications to these experiences, exacerbating feelings of distress and grief. People commonly described communication problems with healthcare providers, including difficulty contacting staff by telephone and getting information about their relative/friend, misinformation concerning the patient’s condition and hospital policies, perceived staff insensitivity, and a lack of involvement in care or treatment decisions. Some people also raised concerns around the quality of care provided to their relative/friend.

My wife was sent home from hospital to die, in a situation where I feel she could have received medical care. She was left without adequate care for three days over a weekend as they discharged her too quickly for a care package to be arranged. When the package was implemented, she was already critically ill but no one actually told me. No one told me how poorly she was, and this left me in a situation where she died before I said goodbye. I am struggling to deal with this’. (Bereaved husband, CRID704)

Infection control measures denied many people the opportunity to spend time with their dying relative/friend, especially in hospital and care-home settings. This was especially the case in the earliest months of the pandemic when visits were prohibited, but also occurred later on when misinformation or untimely communications meant that they missed the death, despite officially being allowed to visit when the patient was deemed ‘end of life’. Participants described mixed experiences of communicating with their sick relatives through video calls on phones or iPads. While some valued the contact that this gave them, others described frustrated attempts caused by poor Internet connection, problems with equipment and being unable to hear the conversations properly; this exacerbated people’s sense of heartbreak and frustration that they could not physically visit. Among those who were able to visit, many described difficult experiences and anxieties related to wearing personal protective equipment (PPE) and unclear guidance on the use of this. For some, the need to wear masks and gloves caused significant upset as it interfered with their desire for final physical contact. People bereaved early on in the pandemic also described their upset at the lack of protection available around the hospital site (e.g. hand sanitizer) and their related worries over contracting and spreading the virus either to the sick patient or other family members.

I feel resentment towards the pandemic for robbing me of the last 5 weeks of my mum’s life. Whilst I was able to visit her the morning she passed away, holding her hand through a nitrile glove & being unable to kiss her one last time due to the full PPE head mask was difficult to cope with, as much as I cherish being allowed to see her in her final few hours. (Bereaved daughter, BRID523)

This lack of contact at the time of death, often combined with the sudden and unexpected nature of COVID-19 deaths, intensified the sense of loss and pain. Death experiences were described as ‘traumatic’, depicted as ‘nightmares’ and were associated with severe anxiety and feelings of panic. The inability to visit or say goodbye left many people with feelings of intense sadness and guilt that they could not be there to comfort and support their relative. Participants reported a sense that they ‘failed them’ and worried that they may have felt abandoned. This was particularly true for participants whose relatives died in hospitals and care homes, with relatives of those who lived in care homes describing extended periods of separation. Where relatives had dementia, further upsets were described relating to problems using virtual methods of communication to stay in contact, and the potential distress caused to them by widespread PPE use and limited physical contact. For some, the lack of contact prior to their death meant that the loss felt less ‘real’ and harder to accept. For those acting as the main point of contact with care settings, the pressures of being the ‘messenger’ and having to provide answers to other family members and friends added to their stress and emotional burden, particularly when tensions developed.

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 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. (Bereaved wife, BRID438)

Negative emotions such as anger at being unable to visit, at the care that their loved ones received or treatment decisions that were made, further affected relatives’ ability to process and reconcile their feelings surrounding the death. Having unanswered questions or doubts over how or why they died, and feelings that the deaths may have been avoided by the earlier introduction of infection control measures or, for non-COVID deaths, continued access to treatment, compounded this anger and upset.

My partner had her treatment (as part of a clinical trial) stopped because of COVID. They said the risks if she got COVID were too high. However, she died anyway. She had one trip to hospital where the doctor failed to send her out of hospital with essential antibiotics. Because carers weren’t allowed into hospitals I didn’t know this had happened and she didn’t know what should have happened & I am not complaining, I believe everyone was trying their best and sometimes it wasn’t enough & however because it’s no one’s fault there is nowhere to place the anger, the complex emotions above and beyond ‘normal’ bereavement are too huge to process. This needs to be recognised. (Bereaved partner, BRID487)

Mourning, memorialisation and death administration

Disruption to the bereavement process continued following the death. People were unable to visit their loved ones in the chapel of rest or funeral homes to say a final goodbye, and people bereaved by COVID-19 described the distress caused by ‘closed coffin’ requirements. Families were unable to complete rituals, such as dressing and preparing their loved one before burial. These were seen as ‘final acts of love’ and their impossibility was reported to have directly impacted their grieving.

We couldn’t dress her, do her hair or put little things in the coffin or wake her properly. She was always well turned out and she always took great care of her hair. We couldn’t do any of those final acts of love for her. (Bereaved daughter BRID296)

Restricted funeral practices caused further upset to grieving family members, especially when attendance was limited to 10 or fewer people and taken-for-granted practices such as readings and singing were prohibited. Families had to make difficult decisions regarding who attended, while travel restrictions meant that people from outside the local area were unable to attend or be closely involved with funeral arrangements. Close family members and friends who were shielding or self-isolating were also prevented from attending. Many people described their upset at not having their wider family and friends at the funeral, being unable to sing chosen songs or conduct religiously appropriate ceremonies. They expressed general sadness that their loved one could not have the ‘send-off’ they deserved. People also commented on the added distress caused by having to travel to and from funerals alone, sit apart from friends and family and being unable to comfort or be comforted by them.

It was a horrendous experience not being able to hug and cry with family members, not being able to give loved one a proper send off, the whole thing was a harrowing experience. (Bereaved relative, CRID145)

The supportive role and efforts of funeral directors were positively noted by many participants. Descriptions were given of innovations and adaptations made to memorialisation practices and services. Virtual streaming of funeral services received mixed appraisals; some people found this ‘stark’, whereas others were deeply appreciative that this technology was available. Examples were also given of local communities lining the streets to pay their last respects. A minority of participants appreciated the intimacy and reduced stress associated with smaller, quieter funerals. However, for most, being unable to host conventional services or wakes, share stories and celebrate the life of their loved ones was deeply upsetting, and made it difficult to find closure and begin to grieve. Consequently, many people felt that their loved one had not been remembered as they would have liked, and that their grief and bereavement was unreal and ‘on hold’.

Funeral was small and still feel we haven’t properly said goodbye, so many of her friends often ask when we will be able to do a memorial service feels as though her life has gone and not been fully recognised for the person she was. (Bereaved sister, BRID137)

This disruption and upset to memorialisation practices continued beyond the funeral. Restrictions to cemetery visits and being unable to scatter ashes in chosen resting places caused further distress. The need for dedicated memorial spaces and remembrance activities was also mentioned, particularly in the face of COVID-scepticism in the media and among a minority of the general public. The hopes of some people, bereaved early in the pandemic, to have ‘proper celebrations’ after lockdown restrictions eased were fading as the pandemic progressed. There was a growing realisation that this may never happen due to ongoing restrictions and a sense that the moment had passed, adding to their sadness and regret.

I wish there was a dedicated memorial in our town, maybe in a park or near the town hall where we can sit and remember. I’ve found it incredibly hard to listen to the rubbish being spouted on tv by various ‘celebrities’ saying it’s all a lie and a hoax. My dad’s death is not being used to boost their flagging career. I’m sick of listening the narrative coming from the government. (Bereaved daughter, BRID98)

People also described how the practical and administrative aspects of dealing with their bereavement had been made more difficult by the disruption caused by the pandemic to professional services. These included obtaining death certificates, arranging funerals over the phone, informing financial and other agencies of the death, and selling and vacating the houses of those who died. Long administrative delays and difficulties getting in touch with the right people/agencies was highly stressful for family members already grieving. Unresolved life insurance claims were a further source of anxiety and the emotional toll of dealing with the property and possessions of the deceased was noted.

Since his death have had so many problems trying to get things sorted out and it has been a nightmare of missed calls and writing letters to wait months for a reply. This has been a sad soul destroying journey which I wouldn’t wish upon anyone else, it hurts and is still hurting and confusing questions still remain unanswered. (Bereaved wife, BRID167)

Mass bereavement, the media and the ongoing threat of the pandemic

The distress and grief complications caused by restrictions on visiting and mourning practices were further compounded by the ongoing nature and wider societal consequences of the pandemic. Around 1 in 10 participants had suffered multiple bereavements since the start of the pandemic, reflecting on how overwhelming an experience it had been to lose more than one close contact in such a short space of time, while others recalled the added strain that they felt as a result of recent pre-pandemic losses. One participant described the additional distress caused by the disproportionate effects of the pandemic on minority ethnic communities, and the societal inequalities that it has highlighted.

It has been hard as a Black person, seeing how many Black, Asian and minority ethnic citizens have been impacted by the Coronavirus, along with White communities of course. The pandemic has laid bare how many health and care inequalities exist in British society. It is my hope that in future, and as a result of the unavoidable public enquiry, health and care outcomes for disadvantaged groups improve dramatically in coming decades. (Bereaved son, BRID731)

Participants described the dehumanising effect of being bereaved at a time of mass bereavement and the negative impact of daily death tolls announced in the media. Some people reflected on how this widespread trauma left them feeling unable to openly grieve or seek support. Feelings of anger and alienation were caused by perceptions of government incompetence in handling the crisis, conspiracy theories questioning the pandemic shared in social and mainstream media, along with members of the public and officials disregarding social-distancing requirements and regulations. Such behaviours were seen not only as disrespectful and exacerbating the threat posed by the disease, but also as undermining opportunities for their families to grieve under more ‘normal’ conditions.

The enormity of the loss of life confronting the UK has left me with the feeling that l cannot openly grieve the loss of my friend or formally seek support. One friend suggested l should take comfort from the fact so many others are also grieving, l found this comment distressing. I felt silenced and shut down. (Bereaved friend, BRID153)

Constant coverage of the pandemic also meant that participants’ grief and trauma felt inescapable, with daily reminders of the circumstances surrounding the death. Participants bereaved by COVID-19 described anxiety relating to the continued threat of the virus and the looming prospects of a ‘second wave’.

I’m struggling with COVID being around still, thus one of the only things that is talked about every single day. I try to avoid the news to refrain from being constantly reminded of my loss. I’ve had to put a barrier up so high to not let insensitive comments directed unintentionally at me, affect me. I’ve had to remind myself that this is affecting the whole world on different levels and to try not to take anything personally. (Bereaved daughter, BRID215)

Fear of catching or spreading COVID also had a significant impact on people’s adjustment and ability to cope following the bereavement, particularly among those bereaved by COVID-19. People found it difficult to prioritise their own grief when worrying about themselves or other family members contracting the virus, particularly if they were clinically vulnerable themselves. This fear surrounding the disease also made it difficult for people to go about their daily lives. Many participants described anxieties about going shopping, socialising, returning to frontline jobs or their children returning to school.

I fear that the same will happen to me as I’m [clinically vulnerable] and have two [children] and I don’t want them to go through losing their mum in the same way. I’m terrified of them going to school and getting infected. How can I grieve when I’m terrified and trying to protect them. (Bereaved daughter, BRID15)

Grieving and coping (alone and with others)

Many people were separated from their usual support networks during lockdown conditions. Grieving processes were impacted by being unable to meet up to remember their relatives/friends and to support each other in their grief. Social isolation made it more difficult to grieve and to come to terms with their loss. Feeling distant from and lacking physical contact with close others made their grieving feel ‘artificial’; it was more difficult to share memories, discuss feelings openly and begin to come to terms with and process their shared grief and loss. It was also more difficult to access or provide the emotional support that was needed, and many participants reported loneliness. People described great upset and frustration at being unable to provide support to other family members or to the family of friends who had passed away. They also had concerns over not troubling others at a time of universal suffering and hardship and felt that (non-bereaved) others could not understand what they were going through due to the exceptional nature of pandemic bereavement.

As a group of friends we haven’t been able to help each other and hold each other through this difficult time. It came as a massive shock, and I feel so lost. I want nothing more than to be around my friends. (Bereaved friend, CRID756)

A minority of people perceived benefits to grieving in private, without having to manage difficult social situations. Some benefitted from close contact with their immediate family, whereas others found comfort and support through virtual methods of communication. However, for others, their constant closeness to their immediate family during lockdowns made it harder to process their feelings. Some felt that they had less space and time to grieve properly due to family responsibilities, which were intensified by home-schooling and in some cases the mental health needs and difficulties of other family members. Feelings of isolation and emotional distress were also acute when family members had pre-existing strained relationships or complex dynamics or where new tensions and conflicts emerged surrounding the death/post-death period.

I found being on lockdown with my wife and children made it extremely hard to get in touch with the grieving process - 24 hours a day, 7 days a week of responsibilities to others did not give me the space I needed to even think about my loss properly, and the strange atmosphere of lockdown made it hard to pinpoint what was going on for me emotionally around the loss of my dad. (Bereaved son, BRID144)

Many participants grappled with a loss of meaning and purpose. This was not only in relation to their lost relationship and associated roles, activities and life-plans, but also with respect to difficulties finding new purpose and hope in the context of pandemic restrictions and suppression of taken-for-granted ways of life.

At first you have a purpose. The funeral. Sorting things out. Afterwards and I think due to the pandemic I have little purpose or meaning in life. I focus for work but I don’t see the point. The smallest thing rocks me. (Bereaved partner BRID391)

People reported feeling overwhelmed and unable to make important life decisions in response to changing circumstances caused by the pandemic. Participants with pre-existing mental health problems described how restrictions made it much harder for them to manage their condition. People struggled with not being able to leave the house to visit friends or to engage in activities or hobbies. They were unable to volunteer or attend church or to experience respite from their situation. Many participants described a need to keep busy and to try to maintain as much of a ‘normal’ life as possible, although this was very difficult during periods of lockdown.

As a remote worker, once I went back to work it’s been harder to deal with the isolation and maintain a work/life balance. I’ve been a carer for a parent with cancer since I turned 18 [&] and I’m not used to having time for myself and to indulge in hobbies, and with the current restrictions it’s almost impossible to take up a hobby so I can find myself working late to fill the time. (Bereaved daughter, BRID697)

Work and employment

A number of problems relating to workplaces and employment were reported, in particular, perceived insensitivity and a lack of understanding and compassion among managers and colleagues. People described feeling pressured to return to work before they felt ready, and managers expressing disappointment when doctors notes were used to extend their bereavement leave. Some felt that they were judged negatively for poorer performance, made to feel that they were not coping, and that their employers’ expectations for their recovery were unrealistic. Others thought that by taking time off they would be ‘giving up’. A number of participants reported needing time off further into their bereavement, with suggestions that this may have been avoided if they had been better supported following the death.

Work was incredibly unsupportive & I was judged in a negative light as my performance dropped immediately after the funeral. They were also annoyed I took some time off. They had only offered one day of compassionate leave for the funeral. I feel v. strongly that companies need to [review] their bereavement policies. (Bereaved daughter, BRID470)

Some people were disinclined to take time off at a time of financial uncertainty, from fear of losing their jobs. Those running their own businesses described additional financial pressures and concerns over loss of livelihood. Where people had experienced job-loss, the negative impact on their mental health was noted. People in frontline jobs described difficulties managing their grief and working in pressured, public-facing roles. Others described the isolating effects of being furloughed or working remotely, which made it harder for them to connect with and feel supported by their colleagues. Workload pressure also prevented people taking time off or seeking the support that they needed. Healthcare workers explained that their clinical work meant that they were constantly reminded of the ongoing threat of the pandemic and the personal trauma they had suffered, but that they also felt guilty about taking time off and being unable to support their colleagues.

We have had to seek out legal support as my husband was unfairly dismissed from work during the pandemic. This has caused us a lot of stress. It would have been very useful to have access to someone who was able to tell us what we were legally able to pursue early on, as my husband’s mental health spiralled out of control due to these additional stressors. (Bereaved mother, BRID267)

Support from the health and social care system

Difficulties accessing bereavement support from general practitioners (GPs) and bereavement services were commonly reported (and described in detail elsewhere, Harrop et al. ⁵ ). Difficulties relating to support from other parts of the healthcare and social care system were also identified, including help with the effects of long COVID and managing other chronic conditions alongside their grief. A participant who experienced pregnancy loss described the trauma of her experience. She stated that her anxiety was exacerbated by being without her partner during scans, consultations and surgery, as well as a lack of support afterwards due to the focus on Covid-19. Many participants felt let down by absent or inadequate follow-up contact after the death from GPs, hospitals and care homes. They described feeling lost in having to manage their bereavement alone, as well as not knowing where to turn to receive answers or further support. The need for timely provision of verbal and written information relating to bereavement services, registering the death and arranging funerals was also identified.

What would have helped: a) asked if I was okay b) was there anyone that I was close with that I could talk to (family, friends, partner etc.) c) put me in touch with some bereavement support, either in person, online or via the phone (preferably send these to my email so that I could look at them later – my mind was so scrambled I couldn’t barely remember anything) d) clarify what happens next e.g. death certificate, registering death, organizing funeral etc. (Bereaved granddaughter, BRID486)