Racism directly impacts how people experience grief and bereavement, according to the largest study of its kind.
Bereavement services must adapt to be anti-racist, avoid making assumptions based on race and accommodate individual needs, finds the research by King's College London and University of Sheffield.
Participants in the new study, funded by the National Institute for Health and Care Research (NIHR) , describe how racism experienced in healthcare, workplaces and even counselling rooms affects end-of-life care and bereavement.
The research, published in BMC Medicine, is the largest qualitative investigation of bereavement among ethnically diverse communities in UK healthcare to date and addresses a long-standing gap in bereavement care.
Grief is increasingly recognised as a public health priority: bereaved people face higher risks of anxiety, depression and prolonged grief, alongside increased healthcare use, ill health and mortality, particularly in the first year after a death. Yet support has not reached everyone equally.
Participants recruited from across England reported negative experiences, such as a relative being neglected on a hospital ward because of her ethnicity and an imam sent to a dying Hindu man's bedside because staff assumed all "brown faiths" were the same. One participant reported being told by a counsellor that she could talk about her sister's death, but not about the racism she had faced.
One participant, a Black Caribbean woman, told researchers: "You have to dismantle the racism before you can find a way to make these sorts of services work."
These experiences eroded trust, left many feeling unwelcome or unsafe in the very services designed to support them and compounded the pain of losing a loved one.
Researchers interviewed 121 bereaved people aged 21 to 81 from Bangladeshi, Indian, Chinese, Pakistani, Black African, Black Caribbean, Arab, White Irish and Polish communities across England. Recruitment was centred on London, Sheffield, Leicester and Luton, but extended nationwide through community networks and social media.
Nearly seven in ten participants were first-generation migrants and more than half spoke English as an additional language. Interviews and focus groups were carried out in participants' preferred languages by 'Community Researchers'(people from the communities, trained to carry out interviews).
This approach enabled the study to reach people rarely represented in bereavement research.
For Dr Sabrina Bajwah, a Clinical Reader and Honorary Consultant in Palliative Care at King's College London and co-lead of the study, it was her personal experiences that encouraged her undertake this research.
Dr Bajwah, said: "When my brother died unexpectedly, I realised that three generations of my family urgently needed professional bereavement support. However, I quickly "hit a brick wall" looking for help that was culturally and religiously appropriate. I found myself having to explain the basics of my culture and religion to bereavement services.
"Our research also revealed the double-edged nature of family, faith and community support. While faith networks and cultural traditions were often a vital anchor, cultural expectations could leave people with no space to grieve. On the other hand we found that others, particularly recent migrants, described coping entirely alone.
"This study shows what becomes possible when research is done with communities rather than on them. Our Community Researchers were central to reaching 121 people from thirteen ethnic backgrounds, many of whom had never spoken about their grief before. The message from them is clear: bereavement services must adopt an anti-racist stance, avoid assumptions, and adapt to different people's needs."
Until now, there has been little evidence of these communities' bereavement experiences to guide services, and the dominant models of grief were developed with little input from ethnically diverse communities.
The team developed a new framework for designing bereavement support in the UK and internationally.
The researchers say bereavement services must move beyond individualised counselling models that were not designed with ethnically diverse communities in mind, and move from 'cultural competency' training to cultural safety. This would include acknowledging historical injustices, validating collective expressions of grief, actively confront racism, and work with faith leaders and community networks.
Dr Catriona Mayland, co-lead, Senior Lecturer and Honorary Consultant in Palliative Care, University of Sheffield, said: "Every member of our research team, including myself, has experienced the loss of someone important. Bereavement support should be seen as proactive, preventive care to help protect long-term health, wellbeing, , and reduce future demand on healthcare services. Our research challenges the idea that grief is solely an individual experience, showing instead that how people cope after a death is shaped by their relationships, communities, wider social circumstances, and experiences of racism. Participants I interviewed, however, shared the challenges of coping alone, often facing marginalisation and feeling adrift from their usual mechanisms of support."
Rammi's story
Rammi Janack, a communications consultant from London who took part in the study, lost her husband, Tyrone, to a brain tumour in her mid-30s. As a young South Asian widow, she felt isolated and unsupported. While Tyrone was well looked after by the palliative care system, Rammi said there was a lack of signposting for her own mental health needs after he died.
Rammi said: "I didn't have anybody in the same boat as me. And you weren't really reached out to. How you were going to cope wasn't something that was ever discussed."
She experienced a shortage of adequate support services, a lack of workplace and community support, and challenges from differing cultural expectations around death and funerals.
"Tyrone was born a Hindu man and he was aware of his faith. But he wasn't a practicing Hindu. During his palliative care he'd never made any statements as to how he wanted his funeral to be, because as a young man he never actually thought he was going to pass away.
"My late husband's family preferred a Hindu funeral. But that's not the man I knew. As a modern young Asian that's not my experience of how I wanted the funeral to be. It would have been helpful to have support to navigate those nuances."
