Racism Directly Shapes and Intensifies People’s Experience of Grief

Racism can fundamentally alter how people experience death, grief and bereavement, according to the largest qualitative study of ethnically diverse communities in UK healthcare. Researchers from King’s College London and the University of Sheffield say bereavement services must move beyond one-size-fits-all counselling and adopt an explicitly anti-racist approach. Their findings, published in BMC Medicine and funded by the National Institute for Health and Care Research, show that discrimination in hospitals, workplaces, counselling rooms and community settings can affect not only the quality of end-of-life care, but also the psychological and physical consequences of bereavement.

The study addresses a major gap in bereavement research. Grief is increasingly treated as a public health priority because losing someone close is associated with elevated risks of anxiety, depression and prolonged grief disorder, as well as increased use of healthcare services, poorer general health and higher mortality, particularly during the first year following a death. However, many established models of grief were developed with limited participation from ethnically diverse communities. As a result, services may interpret grief through an individualised psychological framework while overlooking the influence of racism, migration, religion, family obligations, social isolation and collective forms of mourning.

Researchers interviewed 121 bereaved people aged between 21 and 81 from Bangladeshi, Indian, Chinese, Pakistani, Black African, Black Caribbean, Arab, White Irish and Polish communities across England. Recruitment was concentrated in London, Sheffield, Leicester and Luton, but participants were also reached through community organisations, social media and wider national networks. Nearly seven in ten participants were first-generation migrants, while more than half spoke English as an additional language. Interviews and focus groups were conducted in participants’ preferred languages by trained “Community Researchers” who had knowledge of the communities involved. This design helped researchers include people who are often missed by conventional studies, especially those who may distrust formal institutions or find mainstream services culturally unsafe.

Participants described experiences in healthcare that intensified distress before and after a death. One person reported that a relative was neglected on a hospital ward because of her ethnicity. Another recalled an imam being sent to the bedside of a dying Hindu man because staff appeared to treat different “brown faiths” as interchangeable. Such incidents are not simply failures of cultural etiquette. In technical terms, they can disrupt person-centred care, weaken informed decision-making and undermine the trust required for patients and families to communicate their needs during critical illness. When families believe that their identity is being ignored or stereotyped, they may be less likely to ask questions, challenge decisions or seek support later.

Racism also appeared directly inside bereavement counselling. One participant said a counsellor told her she could discuss her sister’s death, but not the racism she had experienced. The researchers argue that excluding racial trauma from a grief conversation can separate the loss from the social conditions in which it occurred. Bereavement may involve not only sadness and longing, but anger, fear, institutional mistrust and the psychological effects of repeated discrimination. If practitioners treat those responses as irrelevant or pathological, they risk misidentifying the source of distress and placing responsibility for recovery entirely on the bereaved person. One Black Caribbean participant summarised the challenge bluntly: “You have to dismantle the racism before you can find a way to make these sorts of services work.”

The findings also complicate the assumption that family, faith and community networks are universally protective. For some participants, religious traditions, extended families and cultural networks provided practical help, emotional security and a shared language for mourning. For others, cultural expectations created pressure to remain strong, care for relatives or follow funeral practices that did not reflect the wishes of the deceased. Recent migrants sometimes described coping almost entirely alone, separated from familiar support systems and uncertain about how to access services in England. The researchers therefore present social support as a complex system rather than a guaranteed resource: the same family or community structure may offer belonging to one person while limiting emotional expression for another.

Rammi Janack, a communications consultant from London, illustrated these tensions through the death of her husband, Tyrone, who died from a brain tumour when she was in her mid-30s. Although she said he received good palliative care, she felt there was little signposting for her own mental health needs after his death. As a young South Asian widow, she found few people in a similar situation and said that no one had adequately discussed how she would cope. Funeral decisions added another layer of difficulty. Tyrone had been born Hindu and was aware of his faith, but he was not a practising Hindu and had never expressed a clear preference for his funeral. His family preferred a Hindu ceremony, while Rammi felt that this did not reflect the man she knew. She said professional guidance could have helped the family navigate the difference between inherited tradition, personal identity and individual choice.

The research team says the solution requires a shift from cultural competence to cultural safety. Cultural competence often focuses on teaching professionals general information about specific religions or ethnic groups. Cultural safety goes further by asking healthcare organisations to examine power, prejudice and institutional practices, while allowing patients and families to determine whether care feels respectful and secure. In bereavement services, this could involve acknowledging historical injustices, actively confronting racism, validating collective and community-based expressions of grief, providing interpretation, and working with trusted faith leaders and local organisations. It also means avoiding assumptions: ethnicity should not be used as a shortcut for determining religion, family structure, funeral preferences or emotional needs.

Dr Sabrina Bajwah, a Clinical Reader and Honorary Consultant in Palliative Care at King’s College London and co-lead of the study, said her own experience of losing her brother revealed how difficult it could be to find support that was culturally and religiously appropriate. She said families were often forced to explain the basics of their culture and faith to services that were meant to help them. Dr Catriona Mayland, Senior Lecturer and Honorary Consultant in Palliative Care at the University of Sheffield and the study’s other co-lead, said bereavement support should be understood as proactive, preventive care. Early, appropriate intervention could protect long-term wellbeing and potentially reduce future demand on healthcare services. The study’s central conclusion is that grief cannot be understood solely as an individual psychological response: it is shaped by relationships, communities, social circumstances, migration histories and exposure to racism.

By involving Community Researchers and conducting conversations in preferred languages, the study demonstrates how research methods can influence whose experiences become visible. The authors have used the findings to develop a framework for designing bereavement support in the UK and internationally. They say future services should be co-designed with ethnically diverse communities rather than imposed on them, and should measure whether people feel safe, heard and respected—not merely whether an appointment was offered. For bereaved families, the difference could be substantial. Support that recognises both personal loss and structural discrimination may help transform bereavement care from a service that many people experience as alienating into one capable of responding to the full complexity of grief.

References: Study published in BMC Medicine; research funded by the National Institute for Health and Care Research; conducted by researchers at King’s College London and the University of Sheffield.