Development of the resource
Theories provide a way to understand and explain our experiences. We know that family support is key to managing bereavement, but most theories focus on individual experience. This resource draws on two exceptions which have been used to underpin the content of the site and provide an evidence-based approach to family support.
Family Sense of Coherence
‘Family Sense of Coherence’ focuses on a family’s strengths and the development of resilience. We have previously applied the theory to support families caring for individuals at the end of their lives and this demonstrated its value in the context of bereavement.
When applied to bereavement, it is known that a family’s ability to cope with the death of a loved one is influenced by meaning, comprehensibility, and manageability.
The diagram below illustrates the theory further.
The Dual Process Model of Coping with Bereavement
The second theory that we have drawn on to provide an evidence-based approach to support is the family extension to the ‘Dual Process Model of Coping with Bereavement’. This describes family tasks influencing loss and restoration (change) orientated coping for family members and the oscillation (or constant fluctuation) that occurs between these tasks.
In the diagram below we have combined the Dual Process Model (in the boxes to the left and right) with the Family Sense of Coherence (in the centre). Together they illustrate the underpinning theory for family support that we have used throughout the resource.
Experiences during COVID
The COVID 19 pandemic and ensuing restrictions has had a lasting impact on those experiencing bereavement during this time. This has highlighted the need for research evidence to inform development of resources to support bereavement. In particular there was a clear gap in provision of support for those who usually grieve with family and friends, rather than seeking professional support.
This resource was developed by researchers at the University of Southampton in collaboration with people who have been bereaved and bereavement professionals. Based on a review of the evidence and findings from a survey we carried out with bereaved people and professionals we identified key elements of family bereavement support.
Here we summarise some of the main findings of the survey.
Experiences of Death
Where a person is cared for has a significant impact on the bereaved. Visiting restrictions and how they were enforced in hospitals and care homes meant an inability to be present during the dying process, to bear witness, which alongside the sudden nature of many deaths resulted in incomplete endings.
Making decisions regarding who could visit if only one family member was allowed, alongside fear of infection or transmission of the virus, and the requirement for personal protective equipment to be worn, were also sources of distress. For some, visitor restrictions led to family conflict.
Health and bereavement services adapted their ways of working, utilising technology via video calls, text messaging and social media to facilitate contact and provide regular information and support. They often went the extra mile with acts of kindness which provided comfort.
The Impact on Funerals and Cultural Rituals
Following a death, the collection of death certificates, visits to registry offices and appointments with funeral directors had to be arranged online or by telephone. This prevented opportunities for bereaved families to meet professionals, ask questions and begin to make sense of the death.
Restrictions disrupted funerals, cultural rituals and usual ways of mourning. This lack of celebration usually afforded by religious and cultural traditions increased isolation and feelings of guilt at not being able to mark the life of the person who had died.
However, new ways of mourning including online funerals enabled greater access, and where recorded provided a lasting memorial. When funeral services were able to take place some found that restrictions on numbers of mourners meant the experience was more intimate and did not require them to conform to ‘normal’ societal expectations.
The Impact of Social Restrictions
Social restrictions increased isolation for the bereaved and were a source of frustration when they were deemed to be unnecessary or there was conflicting guidance. The restrictions also resulted in delays in administrative processes and reliance on technology with lack of face-to-face support. Social networks and usual routines which bring comfort were disrupted such as seeing, family and friends, attending church, going to the gym, or work. This increased loneliness and impacted mental health and wellbeing.
However, time away from ‘normal’ life enabled families to take grief slowly, providing space and justification for not having to socialise. Some formed support bubbles or disregarded restrictions for the greater good of caring for one another. For others online groups, inner faith, or starting fundraising activities were used to combat isolation. It was widely recognised that the changing restrictions and the associated uncertainty was universal.
The Impact of Media Reporting
In the media, misinformation, mixed messages and contradictions in public health and safety information were a source of frustration and anger. The prevalence of death reporting via mass statistics was difficult for some people minimising or overshadowing their own experience of grief and pain. However, the widespread social acknowledgement of grief allowed the experience of grief to be widely recognised which could help discussions between friends and family.
Recommendations
The legacy of the pandemic means it is important to learn lessons for the future:
- Celebrate and remember the kindness and compassion that was shown within families and communities during the height of the pandemic.
- Use the opportunities provided by widespread media coverage of death and bereavement to continue conversations within society and between families and friends.
- Sustain and develop further new ways of working and communicating particularly the use of technology.
- Continue to develop new funeral practices and ways of memorialising.
- In the event restrictions are required in the future it is essential that they take account of how to maintain important family connections.