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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

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 are the study aims?

We will design an online resource, to provide bereavement support by helping users make sense of the loss of the person close to them. We will work with patients and public representatives, bereavement experts, such as bereavement organisations and palliative care social workers, and a web designer to develop the resource. This will be carried out through a survey and online workshops.  We will ask people who have been bereaved during the COVID-19 pandemic to test the resource and provide feedback on it by leaving comments in a space provided within the resource itself. This will help us make changes needed to improve it.

What will happen to study findings?

From the start we will work with our patient and public representatives, bereavement organisations, health and social care professionals to ensure our findings reach the widest possible audience. We will share progress, findings and the outcomes of the study on social media channels (e.g. Facebook/Twitter), on the websites of our partner organisations, and the website of the funder of the study, National Institute for Health Research Applied Research Collaboration Wessex (NIHR ARC Wessex). At the end of the study we will report our findings in an academic journal and at relevant conferences.