'Grief is not a medical condition - it's a fundamental part of being human'

Grief is a sensitive and challenging subject, but groundbreaking research at the University of Bristol is helping to change the way we understand and support those experiencing loss.

Loss is part of the human condition, and yet, as communities and individuals, we are often underprepared to talk about or cope with grief. Bereavement support is mostly reactive; formal help can be hard to access; and many of us are uncertain how to communicate about our own and others’ pain.

For more than four years, Dr Lucy Selman, Associate Professor at the School of Population Health Sciences and Associate Professor in Palliative and End of Life Care at Bristol Medical School, has worked with academic colleagues and people who have experienced bereavement in a pioneering programme of work to improve our approach to grief. Through the COVID-19 pandemic and beyond, the team has worked to improve support and practice, generating research, practical resources and policy change while establishing the renowned Good Grief Festival.

Lessons in policy from the pandemic
In 2023, Dr Selman and Dr Emily Harrop of Cardiff University’s Marie Curie Research Centre published a paper on Prolonged Grief Disorder (PGD) among people bereaved during the first year of the pandemic.[1] They found that factors associated with more complicated, longer-term grieving processes were intensified by lockdown, including isolation and loneliness around the time of bereavement; being unable to access social support; and restrictions on coping activities.

The core recommendations of the PGD study are for timely, equal access to grief support; strengthening of informal emotional and social initiatives; and better signposting for bereavement services. ‘Grief has historically been seen as private, even shameful,’ says Dr Selman. ‘But our research shows the important role social connection plays in bereavement. It is not a medical condition – it is a fundamental part of being human.’

This understanding is helping to change the conversation around loss. ‘Grief is no longer seen as a linear journey from denial to acceptance – a common misinterpretation of the Kübler-Ross five-stages model,’ says Dr Lesel Dawson, Associate Professor of English at Bristol, and Arts and Culture Lead for the Good Grief Festival. ‘Newer approaches address the importance of continuing bonds. Healthy, adaptive grieving is not about getting over a loss, but finding ways to remain connected to people who have died and acknowledge their presence in our lives.’

Dr Selman and Dr Harrop’s research is part of an evolution in public policy on grief. They helped author the Bereavement is Everybody’s Business report in 2022 as part of the UK Commission on Bereavement (UKCB), and in 2023 their work was shortlisted for outstanding public policy impact at the Economic and Social Research Council Celebrating Impact Prize awards. ‘The UKCB continues to meet as a steering group to discuss how we can advocate for bereaved people,’ says Dr Selman. ‘And we engage regularly with the Department of Health and Social Care to encourage government to implement the recommendations in the report.’

The Grief Support Guide (2023) is another resource informed by the research programme. Published in ten languages, it directs bereaved people towards the right help. ‘Our research found that people don’t know about the kinds of support and information that are out there,’ explains Dr Selman. ‘There are those who don’t feel comfortable going for formal help, but also aren’t accessing informal support because they don’t know it’s there or how it might help them. The guide covers peer groups, podcasts, books, events, and levels of assistance up to specialist mental health support.’

The Grief Education Project, meanwhile, is a current policy initiative advocating for grief education to be integrated into school curriculums via new government guidelines on relationship and sex education. Dr Selman, Dr Dawson and University of Bristol PhD student Rachel Hare are working on the initiative alongside Child Bereavement UK and the Childhood Bereavement Network. ‘We believe mandatory grief education will help children talk more confidently and compassionately about death and loss,’ says Dr Dawson, ‘preparing them for one of life’s inevitable challenges.’

Good Grief Festival: transforming the academic impact model
Dr Selman’s research is notable not just for its far-reaching influence, but also the way she has engaged communities and bereaved people themselves to inform her work. In this way, it is transforming research conventions by facilitating public engagement and outreach in tandem with the research.

‘In health sciences, the model is often that a researcher writes and publishes a paper, and then we wait for that paper to have some impact on public policy,’ says Selman. ‘But in this case, we started by engaging the audience we wanted to reach through the Good Grief Festival. The research followed and benefited from our existing relationships with people attending the festival, as well as with national stakeholders such as Marie Curie and Cruse Bereavement Support. We used what we knew worked with that audience in a mutually beneficial way, and so the impact arose out of those relationships.'

Established by Dr Selman and her colleagues in 2020, Good Grief is a collaboration between the University of Bristol and bereavement charities and services, with funding from the Wellcome Trust, Marie Curie and the National Lottery Foundation among others. As a core part of the public engagement project, the festival supplied the initial research audiences. ‘Good Grief aims to de-stigmatise grief,’ explains Dr Dawson. ‘It allows people a safe space to come together as communities, online or in person, share stories, and remember people who have died.’

Originally, events for the 2020 festival were planned on campus and at partner venues in the city including Bristol Museums and the Watershed. Despite having to cancel in-person sessions due to lockdown, the founders felt it was essential that Good Grief went ahead. ‘As the extent of COVID-19 deaths across the UK became clear, coupled with the fact that bereaved people were confined at home, we knew the festival was needed more than ever,’ recalls Dr Selman. ‘We transformed it into an online festival, held in October 2020, and it took on a life of its own as we tapped into a need for more open discussion about grief, and a thirst for information and connection.’

The live online events drew 6,000 attendees, with thousands more streaming recorded material over the following weeks. National media coverage extended the festival’s reach further, and with that came an increased awareness of alternative grief support. And then, in turn, the level of public engagement with Good Grief informed Dr Selman’s work on long-term bereavement. ‘I used the festival as a platform for raising awareness of the research and opportunities to participate – and at the same time we could point the research participants to the festival’s grief resources,’ she explains. ‘Then we used Good Grief in 2021 and 2022 to share our research findings and engage with members of the public for their views on its impact.’

'Grief is more than a one-time event; it changes us irrevocably'

Spinoff events have included a collaborative, in-person festival in Weston-super-Mare; Good Grief Connects, a National Lottery-funded community project around equity in end-of-life care and bereavement support; masterclasses with grief professionals; and ongoing mini festivals. The Good Grief website has developed into a resource hub offering curated content on grief support, and was shortlisted for the Scottish Partnership for Palliative Care’s 2023 Demystifying Death Awards.

 Reversing the traditional academic impact model has highlighted the benefits of taking a less conventional approach to disseminating research. ‘Our work shows the need for flexibility in how we think about things like impact and knowledge translation. It’s not a linear process,’ states Dr Selman. ‘We talk in academia as if public engagement, research and impact are separate concepts, but my experience over the past few years has shown that they aren’t.’ Dr Dawson points to a wider trend of engagement before impact: ‘Research is no longer experts observing people with lived experience, but experts and people with lived experience coming together repeatedly to shape research, co-producing events and resources together.’

Taking a multidisciplinary approach to grief
Changes in public engagement, community behaviour and policy will help to mould a grief-literate society that supports the bereaved on their own terms, offering access points and resources that accommodate how people want to engage. ‘The fundamental change is trying to meet people where they’re at with their grief, while not being prescriptive or judgemental,’ says Dr Selman.

The success of the multidisciplinary Good Grief Festival underscores a need to connect with loss in different ways. Grief and emotional recovery coach and festival attendee Dipti Solanki believes the multiplatform approach is more accessible: ‘Good Grief normalises grieving in different ways. It shows that grief support doesn’t have to be the traditional model of sitting one-to-one with a bereavement counsellor. Some people love the workshops, some like just being able to tap into different people’s perspectives on grief.’

Among the alternative formats used to help people address loss are creative activities. Dr Dawson notes that audiences who feel overwhelmed by the idea of an entire festival about death and grief can be more inclined to attend an interview with a famous writer, or watch a segment about music and loss. Her research on creativity and grief shows that art can provide a number of ways to navigate difficult topics: ‘Some people are verbal, but others prefer to work with their hands as a way to express their grief.’

Bristol graduate Ann O’Malley (BSc 2013) lost her mother and her brother to cancer at a young age. She publishes cartoons of her Grief Kid alter ego on Instagram to express her feelings about them, engaging an audience who find her posts hugely relatable. ‘Having those conversations online can be more accessible than traditional grief support groups,’ she says. ‘These images give instant reassurance that it’s not just you who feels this way.’

At the original Good Grief Festival, Ann was on the panel ‘Grief and Cancer’, hosted by Bristol-based children’s author Mark Lemon, who writes about his own experience of his father dying when he was a teenager. She later held a Grief Kid exhibition at the Weston-super-Mare festival and hosted a session where people used her illustrations to prompt responses based on their own experiences. ‘One exercise was about the person that they had lost,’ Ann recalls. ‘The prompts asked questions like, who were they? What reminds you of them? What would you say to them if they were here? The session was about offering the space and a few different tools to get the conversation started and help people to open up.’

Used in this way, storytelling can be a route to making or reconstructing meaning for bereaved people. ‘When someone important to us dies, part of what we lose is the narrative of how life was supposed to go,’ says Dr Dawson. ‘Telling the story of what’s happened is a powerful way for people to process their grief and integrate their loss into a new narrative, reconfiguring their life to include their bereavement.’

Storytelling is also important for maintaining a connection to the person who is gone. ‘It can give people an imaginative space to renegotiate their relationship. There is sometimes unfinished business with the person who has died. Telling stories, perhaps by writing letters to them, can be a way of working through that,’ explains Dr Dawson. ‘Imagination is part of both the problem and the solution in how we rethink our lives. Often people feel guilty after a death, believing they should have done more – but sometimes imagining what happened from a different perspective allows them to have more compassion for themselves.’

A need for acknowledgment
The long-term impact of developments in grief research and policy will be demonstrated in how our approach to death evolves. ‘As a society, we’ve been conditioned into seeing grief, death and dying as a negative thing,’ says Dipti. ‘There’s a fear that if we talk about death, we’re inviting it in. We resist accepting our own mortality, so there’s resistance to talking about grief – therefore our response to loss when it happens remains reactive.’

Instead, she says, conversations about death, bereavement and people who have died should be normalised, allowing us to acknowledge that many of us are grieving and need ongoing support. ‘The acknowledgement needs to be that grief is more than a one-time event,’ she adds. ‘Grief changes us irrevocably.’

A societal shift is required, one that recognises that everybody will be or is already grieving in some way. ‘It’s up to the whole of society: we all have a role to play,’ says Dr Selman. ‘On an organisational level, we should ask what we can do to create more compassionate, supportive schools, workplaces and communities. And on an individual level, we shouldn’t be afraid of upsetting a bereaved person by acknowledging their grief. Showing that you care about what they are going through is never a bad thing.’

For more information on grief research at the University of Bristol, please contact Dr Selman at lucy.selman@bristol.ac.uk. To find out more about Good Grief, including ways to support the Festival's work, visit the website at goodgrieffest.com. You can also find dedicated grief resources and support at goodgrieffest.com/resources.

[1] Prolonged grief during and beyond the pandemic: factors associated with levels of grief in a four time-point longitudinal survey of people bereaved in the first year of the COVID-19 pandemic, Frontiers in Public Health, 19 September 2023. Emily Harrop, Renata Medeiros Mirra, Silvia Goss, Mirella Longo, Anthony Byrne, Damian J J Farnell, Kathy Seddon, Alison Penny, Linda Machin, Stephnie Sivell, Lucy E Selman.