Creating Compassionate Communities to Support the Bereaved

How can we bring together community members and organisations interested in making Bristol a more compassionate city for those who are bereaved or grieving?

Grief affects everyone at some point; in the Bristol area, over 500,000 people suffered a bereavement in the last five years (Sue Ryder, 2019). While it is a normal part of life, it can be intensely painful, frightening and isolating. For an important minority, bereavement has a profound negative impact, leading to increased risk of hospitalisation, depression, suicide, mental illness and substance abuse. Yet in a recent national survey, half of respondents reported being scared of “saying the wrong thing” to someone bereaved (Sue Ryder, 2019). One in two said they didn’t know what support to offer; one in four would avoid talking to somebody about bereavement. These figures were worse among younger people, and in the South West compared with the national average.

Difficulty discussing grief heightens the loneliness of those bereaved. Only 25% of people feel supported following a death (Dying Matters Coalition, 2014) and less than 10% of those in need of support appear to access it (Lichtenthal et al 2011; Currow et al. 2008). Feeling “uncomfortable” asking for help is a key barrier, more common among younger people and the socioeconomically deprived. Public health approaches, which unite stakeholders in a common vision and build on existing strengths within communities, hold great potential for improving public attitudes and helping to ensure the bereaved are well supported.

What did the project involve? 

The project aimed to bring together community members and organisations interested in making Bristol a more compassionate city for those who are bereaved or grieving, to: co-create an action plan for a public health model of bereavement support; and generate relationships and ideas to support future interdisciplinary funding bids.

The team held a ‘Creating Compassionate Communities’ Day at the university of Bristol on May 14th  2020 to build relationships, share information about public health approaches to bereavement support and end of life care, and discuss, in facilitated groups, what we can do together to support each other and create compassionate communities in Bristol.

This involved many diverse stakeholders from across Bristol. These included all the team’s local partners on Good Grief, Bristol, a festival that was launched in May 2020, namely: Arnos Vale, Centre for Death & Society at Bath University, Bristol Museum & Art Gallery, Creative Youth Network, Bristol Black Carers, Off the Record, Sue Ryder, St Peter’s Hospice, The Harbour, Watershed, Winston’s Wish and Grief Encounter South West – plus members of the public the project have consulted with in designing the festival.

During the morning sessions there were short presentations from key figures in public health palliative care (Dr Libby Sallnow, Dr Julian Abel) and from members of the community involved in delivering public health models of end of life care in Frome and of bereavement care in Wales.

Who are the team and what do they bring?

  • Lucy Selman (Population Health Sciences, Bristol Medical School) is an Associate Professor in the School of Population Health Sciences. Her research interests fall into two areas: the development and evaluation of complex clinical interventions, and palliative and end of life care and bereavement. She is currently conducting an NIHR Career Development Fellowship leading the OSCAR study (Optimising Staff-patient Communication in Advanced Renal disease). She is also Co-Principal Investigator on an ESRC-funded national study on bereavement during the COVID-19 pandemic (in collaboration with Dr Emily Harrop at Cardiff University), and the founding director of Good Grief Festival. She co-leads the University of Bristol Palliative and End of Life Care Research Group.
  • Lesel Dawson (English, University of Bristol) is a researcher with a focus on the history of psychology, focusing on how representations of the experience of grief and the meanings attributed to it have changed over time. Lesel has published academic work on the history of emotions and on theatrical and cinematic representations of grief.
  • Lucy Popock (Bristol Medical School, University of Bristol) is an academic GP with an interest in improving care at the end of life. Her particular interests include primary palliative care, interprofessional communication and the coordination of care.
  • Charlotte Chamberlain (Bristol Medical School, University of Bristol) interests are in palliative care, cancer and commissioning decision-making in publicly-funded health systems.
  • Karen West (Policy Studies, University of Bristol) is interested in later life wellbeing, social care and the policy and politics of ageing. She currently has two principle research interests: How we think and talk about death, dying and bereavement. And alternative forms of housing for later life.

What were the results?

During the Creating Compassionate Communities Day the researchers, drew together a range of people to discuss bereavement care. co-produced an action plan to develop a public health model of bereavement support in Bristol and generate relationships and ideas to support future interdisciplinary funding bids.

There were also results tied to an associated partnership development. In September 2019 members of the team were awarded Welcome Trust public engagement funding to put on Good Grief, Bristol in May 2020. This was a major collaboration between the University and external partners, including members of the public who have been involved in co-creating the structure and content of the festival. The project had considerable potential for kick-starting meaningful and long-lasting engagement between University of Bristol academics from across disciplines and partners across sectors in the city, from youth empowerment charities to bereavement charities like Winston’s Wish. The Creating Compassionate Communities Day became in event in which those newly formed relationships were solidified and it was ensured that the festival would have a long-lasting positive legacy.