The coronavirus disease 2019 (COVID-19) pandemic led to devastating mass bereavement that was accompanied by social as well as economic disruption globally.
The unexpected deaths, lack of physical contact with relatives at the time of death, and restrictions during funerals were not only highly distressing for relatives but also had a long-term impact on grieving. Severe social disruption and lack of support networks further increased the risks of the bereaved individuals during the pandemic.
A recent review used the Dual Process Model (DPM) to examine and categorize the types of pandemic-related bereavement circumstances into loss-oriented stressors and reactions and restoration-oriented stressors and reactions. The pandemic resulted in the modification of the loss-orientated and restoration-oriented activities and behaviors of people that resulted in a longer-term impact on bereavement outcomes.
A few examples of pandemic specific loss-oriented stressors include traumatic deaths, lack of emotional and practical preparation time, and lack of social/cultural recognition of the loss while examples of restoration-oriented stressors are loss of work, disruption to routines, erosion of coping resources, and disrupted living arrangements and family dynamics. Although the review identified several factors concerning the model, very little empirical data specific to COVID-19 was considered.
Several other studies provided evidence of some bereavement circumstances and their impacts. One such study highlighted higher levels of prolonged grief disorder (PGD) for those people who were bereaved by COVID-19 as compared to natural bereavement. Another study observed high levels of loneliness, social isolation, and emotional support needs among bereaved people. However, there is still a lack of qualitative evidence on the different aspects of pandemic bereavement experiences.
A new study published in the pre-print server medRxiv* aimed to generate an understanding of the overall challenges that the people experiencing bereavement during the COVID-19 pandemic faced.
The qualitative data for the study was collected in two national surveys, the Bereavement during COVID-19 (BeCOVID) study and the UK COVID-19 Public Experiences (COPE) Study. The BeCOVID study investigated the grief experiences, support needs, and use of bereavement support by people who were bereaved during the pandemic. The COPE study aimed to understand the experiences of the public during the pandemic and the government policy during the first 12 months of the UK outbreak.
Both the surveys included participants who were 18 years or older and had experienced bereavement of a family member or close friend. The surveys involved open and closed questions that covered the end-of-life and grief experiences of the participants.
The BeCOVID survey was disseminated via social and mainstream media, voluntary sector associations, and bereavement support organizations, including those working with ethnic minority communities while the COPE survey was based on convenience sampling, snowballing, and purposive sampling via social media. Both the surveys were first analyzed using inductive thematic analysis followed by DPM.
The results of the study indicated that the percentage of female participants was higher for both surveys. For the BeCOVID survey, the mean age of the bereaved individual was 49.5 years while for the COPE survey it was 61 to 70 years. For the BeCOVID survey, the most common relationship of the deceased to the bereaved was parent followed by a partner while for the COPE survey it was other family members followed by a friend.
The study identified six major themes across both the surveys that included troubled deaths, memorialization and death administration, mourning, the media and the ongoing threat of the pandemic, mass bereavement, and coping.
The lack of contact during death along with sudden and unexpected death due to COVID-19 resulted in an intensified sense of loss and pain. Those individuals who were allowed to visit reported difficult experiences and anxieties related to wearing personal protective equipment (PPE) and unclear guidance on the use of it. Several people described communication problems with healthcare providers leading to misinformation on the patient’s condition while some also raised concerns about the quality of treatment being provided to their relative or friend.
Restricted funeral practices further upset the grieving family members. Restrictions to cemetery visits and being unable to scatter the ashes of the bereaved member at chosen resting places led to further distress. Furthermore, difficulty in obtaining death certificates, selling, or vacating the house of the deceased, unresolved life insurance claims, and informing financial and other agencies of the death had also become difficult due to the pandemic.
Furthermore, the participants described the negative impact of daily death tolls announced in the media. The incompetence of the government in handling the pandemic, members of the public and officials disregarding social-distancing regulations, and conspiracy theories questioning the pandemic gave rise to feelings of anger and alienation.
Many people were separated from their usual support networks due to lockdowns that impacted their grieving processes. The feelings of emotional distress and isolation also became acute among the family members who had had pre-existing strained relationships or complex dynamics due to bereavements. People were unable to make important life decisions during this period.
Many people reported insensitivity and a lack of understanding and compassion amongst managers and colleagues at workplaces while some were pressured to return to work before the end of their bereavement leave. Furthermore, difficulties regarding the health and social care system were also identified. After the inductive analysis, the themes were considered using the DPM and mapped into pandemic-specific loss- and restoration-oriented stressors and reactions.
Conclusion and limitations
In conclusion, the study makes six recommendations to improve the experiences of people bereaved during the current and future pandemics. First is taking steps to reduce the trauma associated with death experiences, Second, improving family support after death by healthcare workers. Third, strengthening the bereavement support sector. Fourth, tackling loneliness and social isolation. Fifth, developing better funeral options and support for the bereaved. Sixth, providing opportunities for remembrance, greater respect, and listening to those bereaved.
The study had two prominent limitations. First, there was an underrepresentation of men and people from minority ethnic backgrounds in the study. Second, since the recruitment was online, very old or other digitally marginalized groups were left out of the study.
medRxiv publishes preliminary scientific reports that are not peer-reviewed and, therefore, should not be regarded as conclusive, guide clinical practice/health-related behavior, or treated as established information.