COMPLETED: Developing a web resource to support families bereaved during COVID-19
Principal Investigators: Dr Natasha Campling and Dr Michelle Myall
Team Members: Dr Natasha Campling (Lecturer & Senior Research Fellow, School of Health Sciences, University of Southampton; Dr Michelle Myall (Senior Research & Implementation Fellow, School of Health Sciences, University of Southampton); Dr Susi Lund (Visiting Research Fellow, School of Health Sciences, University of Southampton); Dr Alison Allam (Patient and Public Representative)
Start: 1 January 2021
Finish: 31 December 2022
Project Partners: Winchester Bereavement Support; The Bereavement Centre (Southern CO-OP)
Plain English Summary
Why is the study needed?
The current coronavirus (COVID-19) pandemic has led to increasing numbers of people who have experienced, or are facing, bereavement both in the UK and worldwide. We know that bereavement can seriously affect people’s health. Bereaved people are more likely to experience serious physical and psychological health consequences, such as heart disease and anxiety and depression, particularly in the first year of losing someone close to them. There are some things that can help prevent the health effects caused by grief. For example, being able to see a person receive good end of life care, being prepared for the death of a person, attending the funeral and having the support of family members and friends.
During COVID-19 many families and others important to a dying person have not been present during end of life care and death has occurred suddenly. Social distancing restrictions have prevented the support often provided through families and friends coming together. Restrictions applied to funerals have prevented some families being able to attend the funeral of a relative. All of this can make it difficult for people to make sense of what has happened and to look for support to help them with their loss and grief. However, traditional ways of providing bereavement support (face-to-face or by telephone or video) may not be possible because of an increase in demand for support. A family focused online support resource, which considers grief in the context of the family, offers a way of helping people to deal with their bereavement in these unusual times.
What did we do and what did we find out?
Families, friends and support networks are key to managing bereavement. COVID-19 social restrictions prevented families and friends from being with the dying and participating in usual rituals to honour the dead.
This resulted in social disconnection, feelings of guilt, and difficulty in making sense of the death and reconstructing relationships. In response to this context a theoretically informed, co-produced web-resource to facilitate meaning-making, which situates bereavement in the context of family and friends, was developed.
We conducted a survey of bereaved people and bereavement professionals to understand how the pandemic had influenced their bereavement experiences and for their views on the key elements of a web-resource. Findings from the survey along with those from a literature review were shared at an online workshop with bereavement professionals to generate agreement on the content and format of the resource. We worked with them and bereaved people to co-produce the resource which was theoretically informed by the Dual Process Model and Family Sense of Coherence. The resource was piloted to gain user feedback which was used to further refine the website. Following these refinements, the website was evaluated via interviews and focus groups with bereaved people and bereavement professionals.
Survey respondents reported the pandemic negatively affected bereavement (guilt, isolation, inability to bear witness) but also presented new opportunities to celebrate the deceased and support the bereaved (new funeral rituals, technology, remote contact, social acknowledgement of grief). Sense-making and managing bereavement were helped through information-giving, support networks, and relocating the person within the family context. A web-resource to facilitate collective grief was viewed positively and endorsed. Key content including family activities to stimulate support, information regarding the range of grief experience and dealing with the practicalities, along with other sources of support was agreed by workshop participants to form the basis of the resource.
The Families and Friends in Bereavement website is a novel resource which encourages consideration of bereavement in the context of close social networks. It enables grief to be understood and managed within a shared experience by promoting communication and meaning-making.ur evaluation data demonstrates that the Families and Friends in Bereavement website:
•Normalises the range of grief experiences (about grief page)
•Gives permission not to have to grieve all the time (space to pause page, Dual Process Model theoretical underpinning)
•Sits well with the nature of grief – can be accessed in small ‘chunks’ (when concentration is limited), dipped into and out over time (as there is no timeline to grief)
•Is therapeutic in itself – calming colours / images and supportive, gentle text, encourages reflection
What difference will this Knowledge make?
•Contribution to understanding experiences and support needs of bereaved people during COVID-19 and beyond
•Using theory to explain these experiences and develop a resource to meet the needs of bereaved people.
•The resource makes an important difference to the health and wellbeing of bereaved people within the local population and beyond, regionally and nationally. Addresses the gap in existing support for those experiencing non-complex grief.
•The website is a useful resource for professionals to signpost people to (something for their toolbox). It offers a useful addition for the current context of tightened / restricted professional resources and bereavement service cuts.
Next Steps
•Pursue impact funding .
•Harness the interest of a charity to host the resource in the longer term.
•Continue to develop partnership with the national funeral director trade associations.
•Develop collaborative funding proposal for submission to NIHR palliative and end of life care call (Public Health stream) to build on this work.
https://familiesandfriendsinbereavement.org.uk/
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