The England-wide study involving 121 bereaved people from 13 ethnic backgrounds found that racism, language barriers and a lack of culturally appropriate support continue to prevent many people from accessing help after the death of someone close to them.
The analysis was led by Professor Lucy Selman at the University of Bristol, as part of a study co-led by Dr Sabrina Bajwah, King’s College London and Dr Catriona Mayland, University of Sheffield and funded by the National Institute for Health and Care Research (NIHR).
The researchers argue that the problem does not lie with individuals or communities being reluctant to seek support. Instead, they say, inequities are rooted in the way bereavement services are designed, funded and delivered.
In earlier research, around half of UK bereavement organisations reported that fewer than 5% of their clients were from minoritised ethnic groups, and a quarter did not collect ethnicity data at all.
Researchers interviewed bereaved people and 23 bereavement support providers from 12 services, and ran co-design workshops with 53 community stakeholders, in one of the largest studies of its kind. They found that obstacles existed at almost every stage of the journey to getting help.
Unusually for bereavement research, the study also examined services from the inside. Staff and volunteers from both large national services and small organisations serving ethnically diverse communities described the challenges they face in providing equitable support. These included relying on a small number of staff to drive equity work and funding systems that put smaller community organisations at a disadvantage.
Many bereaved participants said they were unaware of available support or did not know how to access it. Others described long waiting lists, referral systems that were difficult to navigate and services that lacked staff who reflected the communities they served.
Many communities understood bereavement through family, community, cultural or faith-based practices that were not always recognised by existing services.
Racism emerged as a recurring theme throughout the research. Participants described experiences that affected whether they felt able to trust services, seek support or continue engaging with it. The study also highlighted how ethnicity intersects with poverty, age, gender and migration status.
Lucy Selman, Professor of Palliative and End of Life Care at the Bristol Centre for Grief Research and Engagement and Centre for Academic Primary Care, University of Bristol, and lead author, said: “Our findings point to a need for a fundamental rethink of how bereavement support is provided.
“Rather than expecting communities to adapt to existing services, services should work in partnership with communities and deliver support in places where people already feel safe and connected. This could include community organisations, faith settings and locally trusted venues.”
Dr Sabrina Bajwah, Clinical Reader and Honorary Consultant in Palliative Care at King’s College London and co-lead of the study, said: “When my brother died, I hit a brick wall looking for bereavement support that was culturally and religiously appropriate. This study shows how common that experience still is, and why: the barriers sit within services themselves, and that is the hopeful part, because services and funders can change them. The starting point is cultural safety and an anti-racist approach, built with communities rather than for them.”
One of the strongest messages was the need for investment in grassroots organisations led by ethnically diverse communities, often seen as more trusted and better placed to provide culturally relevant support, yet operating on limited, insecure funding.
Beverley Forbes from Nilaari, a community-led organisation in Bristol which took part in the study, said: “People from ethnically diverse communities come to us here at Nilaari because they know they will be understood. They don’t have to explain who they are or justify what they need before they can get help. Every day, we meet people who have carried grief for years because mainstream services didn’t feel safe, accessible or relevant to them.
“This study makes clear what communities have been telling us for years: if we want to reach the people who are being missed, commissioners need to invest in the organisations the communities already trust. Culturally sensitive, community-led support isn't an optional extra for many people, it is the difference between getting the help they need and being left to struggle alone.”
Participants also called for greater availability of support in community languages, more diverse workforces, and stronger anti-racist approaches within organisations. The researchers, together with bereaved people, service providers and national stakeholders, co-designed recommendations for commissioners, policymakers and service providers. These include embedding equity into service design, strengthening accountability, building long-term relationships with communities and providing sustainable funding for community-led provision.
The authors conclude that tackling inequity will take more than small adjustments: it means recognising that current systems fail to reflect a diverse society, and giving communities a genuine role in shaping the support they receive.
Paper: How to tackle inequities in bereavement support for ethnically diverse communities: A national qualitative study using experience-based co-design by Lucy Selman et al. in BMC Medicine
Policy briefing: Systemic reform needed to make bereavement support equitable for ethnically diverse communities by Professor Lucy Selman, University of Bristol; Dr Emily Harrop, Cardiff University; Dr Sabrina Bajwah, King’s College London; Dr Catriona Mayland in PolicyBristol.
Study website: