Racism and white-centred design drive unequal bereavement support, national study finds

Bereaved people from ethnically diverse communities in England face systematic barriers to formal bereavement support, and a large new study argues that the problem lies less with the people who need help than with the way services themselves are designed, funded and staffed. The research, published in BMC Medicine, is one of the most comprehensive examinations to date of how inequities in bereavement care are produced, and it concludes that the obstacles are concentrated mainly on the supply side of the bereavement support system rather than in individual help-seeking behaviour.

The study, part of the Equitable Bereavement Care For All project, was a multi-phase national qualitative study conducted across England between January 2024 and July 2025. It drew on principles of experience-based co-design and combined three strands of work. First, the researchers interviewed and held focus groups with 121 bereaved people from 13 ethnic backgrounds, recruited in London, Sheffield, Leicester and Luton. Sixty-nine per cent of these participants were first-generation migrants, 55 per cent spoke English as an additional language, and 38 per cent had primary or secondary education only. Second, they interviewed 23 bereavement support providers across 12 services, ranging from large mainstream organisations to small community-run services. Third, they held four online co-design workshops with 53 stakeholders, including bereaved relatives, service representatives and policy and commissioning figures, followed by a hybrid event with 29 participants to refine recommendations.

Recruitment was deliberately structured to reach people often excluded from bereavement research. The team used the Respect–Trust–Equity model, a culturally safe, asset-based framework co-designed with community researchers and patient and public involvement contributors, which treats inclusion as an institutional responsibility rather than a community deficit. Multilingual community researchers recruited participants through community organisations and networks, with support from religious leaders and other key contacts, and data collection was flexible and community-based, conducted in English or languages preferred by participants. The researchers focused recruitment on Black African, Black Caribbean, Chinese, Indian, Bangladeshi, Pakistani and Polish communities, using maximum variation sampling to capture diversity in age, sex, religion and nature of death.

To organise the analysis, the team applied Levesque and colleagues’ patient-centred access to healthcare framework, which conceptualises access as an interaction between five supply-side dimensions of service accessibility — approachability, acceptability, availability and accommodation, affordability, and appropriateness — and five corresponding abilities of the person seeking care: the abilities to perceive, seek, reach, pay and engage. Bereaved people’s data and service provider data were analysed separately using Framework Analysis and reflexive thematic analysis respectively, then integrated through directed thematic analysis guided by this framework, with stakeholder workshops used to refine interpretations and build a logic model.

The central finding was that barriers arose across the whole access pathway but clustered on the supply side. Two cross-cutting themes shaped every dimension of access: racism and intersectionality. Participants described how lifetime experiences of racism eroded trust in health services, influenced whether they were signposted or referred to support, and affected willingness to seek and stay engaged with care. Fear of racism, discrimination and unsafe practice was itself a barrier, particularly for people with insecure immigration status. One service providing counselling to refugees noted that referrers’ attitudes towards people seeking asylum could determine whether refugees accessed the service at all. Intersectionality compounded this: ethnicity interacted with faith, age, gender, socio-economic status and other factors to produce layered exclusion that standardised support models failed to address.

Within the supply-side dimensions, participants described services that did not feel acceptable, available, appropriate, approachable or affordable. In some communities, talking about emotional distress was stigmatised and seeking help outside the family was discouraged, and certain losses — including cancer, suicide and baby or child loss — carried particular stigma. Long waiting lists, language barriers and limited flexibility in delivery repeatedly featured. Larger generalist services struggled to attract and retain diverse workforces, and where teams were not diverse, equity work fell disproportionately on small numbers of ethnically diverse staff, contributing to stress and burnout. Funding was precarious: larger hospice-based services depended on fundraising and volunteers, while smaller specialist services were sometimes providing bereavement support with no dedicated funding at all. Participants also described a poor fit between what was offered and what was wanted, including being offered medication when they sought emotional, practical or culturally meaningful support, and services whose branding — such as Christian names or terms like “chaplain” — signalled they were not intended for everyone.

The researchers also documented facilitators and innovation. Providers described two starting points for equitable care: some emphasised recognising structural inequities and the difference between equality and equity, while others stressed flexible, person-centred care, though participants argued that approaches not openly acknowledging structural and historic racism were unlikely to succeed. Concrete facilitators included dedicated community engagement posts, training on equity and privilege, valuing lived experience and community expertise alongside formal training, and practical support extending beyond therapy to information about benefits, financial help and after-death rituals. Services made themselves visible through community radio, religious institutions, open days and trusted local figures, and delivered support in familiar community venues including places of worship. A community companionship model, in which someone from the bereaved person’s own community makes initial contact, was seen as particularly helpful for people new to the UK. Language access — translated materials, interpreted calls and support in community languages — was described as essential, alongside spaces where people could discuss historical and current racism and its impact on their experiences of loss.

Stakeholders in the co-design workshops reinforced these findings and sharpened the policy implications. They argued that mainstream services often failed to recognise or address racism, undermining trust, and called for cultural safety rather than superficial cultural competence training — an organisational commitment to acknowledging structural racism and historical exclusion. They criticised services shaped by white-centred models of grief that privilege individual therapy while neglecting relational, collective or faith-based forms of support, and rejected one-off interventions in favour of earlier, sustained contact that adapts to families’ changing needs. They also highlighted accountability as a neglected issue, calling for transparent complaint processes and clear evidence that feedback from bereaved ethnically diverse communities leads to change, and noted that terms like “therapy” and “counselling” could deter engagement where more culturally resonant language would not.

The study’s conclusions are deliberately structural. The authors argue that inequitable access is rooted primarily in the design, organisation and cultural orientation of services and the wider bereavement support system, and that limited awareness, mistrust and difficulties sustaining engagement among bereaved people are often consequences of services that do not feel safe, relevant or recognisable. Improving equity, they conclude, will require sustained investment in community-led provision, accountability mechanisms and genuine partnership with ethnically diverse communities — a recasting of the predominantly clinical, referral-based, English-language counselling model rather than a set of discrete improvements. The authors acknowledge limitations: the study was conducted in England and may not transfer directly elsewhere; some groups, including men and smaller or more marginalised communities, were less well represented; provider perspectives came from purposively selected services, many already engaged in equity work; and stakeholder contributions drew on workshop notes rather than fully transcribed data. Even so, the study offers a detailed, multi-perspective account of how bereavement support systems exclude the very communities that most need them, and a practical roadmap — grounded in the experiences of bereaved people themselves — for what equitable provision would actually require.

Subject of Research: Barriers to and facilitators of equitable bereavement support for ethnically diverse communities in England

Article Title: How to tackle inequities in bereavement support for ethnically diverse communities: a national qualitative study using experience-based co-design

Article References: Selman, L. E., Birchall, J., Fisher, E., Oluyase, A. O., Hector-Jack, N.-S., Khatun, T., Saleem, R., Khan, N., Shahid, S., Mahmood, R., Grewal-Santini, G., Afolabi, M., Wang, C., Ng, S., Kumar, R., Bristowe, K., Dunhill, H., Islam, Z., Koffman, J., … Bajwah, S. (2026). How to tackle inequities in bereavement support for ethnically diverse communities: a national qualitative study using experience-based co-design. BMC Medicine, 24(1), Article 566. https://doi.org/10.1186/s12916-026-05254-4

Image Credits: AI Generated

DOI: 10.1186/s12916-026-05254-4

Keywords: bereavement support, health equity, ethnic diversity, qualitative research, experience-based co-design, cultural safety, racism, community-led services, palliative care, access to healthcare, United Kingdom, grief