Improving bereavement support policies and services

The COVID-19 pandemic was not only a global medical emergency; it also had an extraordinary impact on people’s experiences of bereavement. Many people were bereaved in traumatic and distressing circumstances, unable to say goodbye to close family members then attending small, socially distanced funerals. Afterwards, restrictions meant no-one could visit to talk about the person and offer support.

The ESRC-funded ‘Bereavement during COVID-19’ study investigated people’s experiences of grief and what support they needed during the pandemic, as well as the capacity of bereavement services to provide effective and appropriate support.

The research, led by Dr Emily Harrop, Cardiff University, and Dr Lucy Selman, University of Bristol, highlighted the importance of ensuring equal, timely access to bereavement support that can meet the needs of different communities. Their findings have shaped the UK’s policies and services around bereavement.

Video credit: Economic and Social Research Council

Video transcript and on-screen captions are available by watching on YouTube.

About the project

When the research study started in 2020, death rates due to COVID-19 were climbing and social restrictions were being widely imposed. But little was known about how the pandemic would affect people’s experiences of bereavement.

Dr Selman explains:

At the start of the pandemic, I was contacted by clinical practitioners and local palliative care teams asking what they could expect and how they could support people unable to be with their loved ones. There was a strong need for evidence-backed recommendations.

Our research focused on understanding the impact of restrictions on people’s experiences of bereavement and grief. We explored the response by bereavement services, who were suddenly inundated with people experiencing more difficult types of bereavement because of the context of the death and having to shift their services to online and telephone.

Funded through UK Research and Innovation’s COVID-19 rapid response funding stream, the team used a longitudinal survey and interviews with more than 700 bereaved people to investigate the grief experiences, support needs and support use of people bereaved during the pandemic.

They also conducted interviews and surveys with service providers in the voluntary and community sector to gain perspectives on the adaptations and innovations required to replace face-to-face services, as well as the challenges involved in serving specific communities.

Dr Harrop says:

Our study identified rapid, real-time implications for improving end-of-life care and the support available to bereaved people, during and following the pandemic. It demonstrated the extraordinary challenges of bereavement during the pandemic in the UK, including the disruption to end-of-life care, dying and mourning practices as well as social-support networks, coping mechanisms and grief processes.

Importantly, it also highlighted how existing inequities were exacerbated by the pandemic. Even though the pandemic had a disproportionate impact on people from minority ethnic backgrounds, the bereavement services were not in contact with more people from those communities.

In fact, based on our insights from our qualitative interviews with service providers, many experienced less engagement with and access to those services. And while the shift to online and telephone helped extend the reach of services, this change disadvantaged some bereaved people who did not have access to or were unfamiliar with technology.

Impact of the project

The project has informed and shaped UK bereavement policy, practice and service-development during and post-pandemic, bringing to the forefront the urgent need to invest in equitable bereavement support for all.

Shaping bereavement policy

By identifying bereavement challenges and the need to improve support for bereaved people, their research insights prompted the launch of the UK Commission on Bereavement (UKCB) in June 2021. Dr Harrop and Dr Selman, as members of the UKCB Steering Group, helped conduct a public and professional consultation which led to the landmark report, Bereavement is Everyone’s Business. This outlined principles for achieving cross-sector and societal improvements in how bereaved people are supported.

Dr Sam Royston, Director of Policy and Research at Marie Curie, says:

Following discussions with Dr Harrop and Dr Selman in late 2020 I became convinced of the need for improvements in how people experiencing bereavement are supported. Following these and further conversations with colleagues at other charities, including the National Bereavement Alliance and Cruse Bereavement Support, the UK Commission on Bereavement was established to consider how well equipped we are to support people through a bereavement and what changes are needed to improve support to people experiencing bereavement.

Dr Harrop and Dr Selman were both members of the Commission steering group and played a key advisory role, drawing on insights from their study to inform the public and professional consultations that were undertaken by the Commission, including regular meetings with the bereavement team at The Department of Health and Social Care.

This work resulted in the UKCB publishing a report which drew on their expertise and insights. The Welsh Government has also committed to meeting the Wales-specific recommendations of the UKCB report.

In Northern Ireland, the collaboration with Marie Curie also fed into work commissioned by the Department of Health on bereavement support-planning during COVID-19 and informed the aims and strategy of Northern Ireland Bereavement Network, including the development of a Bereavement Charter.

Influencing bereavement service practice

The research team has influenced clinical practice, including addressing inequitable access to support, by regularly presenting results to provider and practitioner audiences such as physicians, nurses and grief-counsellors. Training co-ordinators at Cruse Bereavement Support and Macmillan used the research in their education sessions for staff and volunteers.

Alison Penny, The Childhood Bereavement Network and National Bereavement Alliance, says:

Dr Harrop and Dr Selman have presented study developments and findings three times at our regular webinars for bereavement service managers and practitioners (with over 1,200 people registered).

The study findings on levels of vulnerability and risk factors have been particularly helpful in influencing practice, along with findings on inequitable access to bereavement services. This has helped to provoke and inform sector conversation about how we can better tackle these inequalities, particular in relation to ethnicity, gender and age.

Improving support for bereaved people

Using an ESRC Impact Acceleration Account grant, the team has since developed a public-facing bereavement support resource, The Grief Support Guide, which is continuing to help bereaved people find the support that is right for them.

Dr Harrop explains:

There are lots of different types of bereavement support available, from online information to WhatsApp groups and walking groups. But our research revealed that only a third of bereaved people had been given information about the bereavement support services available. There is a huge need for better signposting to improve people’s understanding of different bereavement support options available for their particular need.