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

Abstract

Background

High-income countries globally are becoming increasingly diverse. People from ethnically diverse communities experience inequities in accessing bereavement support, but evidence to inform equitable provision remains limited. We aimed to determine how formal bereavement support services can better serve ethnically diverse communities by identifying barriers to and facilitators of equitable access, defining key components of culturally safe and appropriate bereavement care, and developing a logic model and recommendations for equitable bereavement support.

Methods

Multi-phase national qualitative study, drawing on experience-based co-design principles. We conducted interviews (n = 53) and focus groups (n = 9) with 121 bereaved people from 13 ethnically diverse backgrounds, interviews with 23 bereavement support providers across 12 services, four online co-design workshops with bereaved people and stakeholders (n = 53), and a hybrid workshop to refine recommendations (n = 29 stakeholders). Recruitment and data collection prioritised cultural safety and an asset-based approach. Directed thematic analysis was informed by Levesque et al.’s access to healthcare framework.

Results

Barriers to equitable bereavement support arose across the access pathway but were concentrated mainly within bereavement support organisations and the wider bereavement support system. Racism and intersectionality were cross-cutting themes, influencing whether bereaved people could identify, trust, reach and engage with support. Key barriers included poor signposting and referral, long waiting lists, limited staff diversity, language barriers, weak organisational commitment to equity, precarious funding, and white-centred, individualised models of grief support. Participants identified culturally safe and equitable care as requiring anti-racist practice, sustained community partnership, provision of support in trusted settings and community languages, holistic and flexible provision, and greater investment in grassroots services designed and delivered by ethnically diverse communities. The logic model and recommendations identify system-wide actions needed to address barriers and support equitable access.

Conclusions

Inequitable access to bereavement support for ethnically diverse communities is rooted primarily in the design, organisation and cultural orientation of services and the wider bereavement support system. Improving equity will require sustained investment in community-led provision, accountability mechanisms, and genuine partnership with ethnically diverse communities. Findings from this robust multi-perspective study provide actionable recommendations to reform bereavement support across high- and middle-income settings.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1186/s12916-026-05254-4.

Background

Bereavement is a major public health issue [1]. The death of someone close is associated with increased risk of anxiety, depression and impaired functioning, and around 5 to 10% of bereaved people develop prolonged grief disorder, now recognised in ICD-11 and DSM-5-TR [2]. Bereavement contributes to avoidable socio-economic costs through reduced participation in education and employment and increased health and social care use [3, 4]. These impacts underscore the need for proportionate, system-wide bereavement support.

Most bereaved people rely primarily on support from family, friends and community networks [5, 6]. However, informal support cannot meet all types or levels of need, particularly where stigma, disenfranchised grief, cumulative adversity or social isolation constrain help-seeking [7–10]. Formal bereavement support that is accessible, trusted and responsive to diverse experiences of grief is also needed.

Evidence suggests that such support is often lacking for people from ethnically diverse backgrounds. Structural barriers in service design and delivery include racism and discrimination, limited trust in statutory services, language barriers, and lack of culturally appropriate support [11, 12]. Service-level data from UK bereavement organisations suggest marked under-representation of ethnically diverse groups among service users: in a mixed-methods study of UK bereavement organisations, around half reported that fewer than 5% of their clients were from minoritised ethnic groups, and a quarter did not routinely collect ethnicity data, limiting accountability and service improvement [13].

A key mechanism preventing uptake could be a mismatch between dominant service models and diverse grieving practices. Existing formal provision may insufficiently reflect the importance and nature of family, faith and community support systems, and there is limited evidence on what forms of bereavement support are acceptable and effective for specific ethnic communities. This limits the ability of providers, commissioners and policy-makers to design equitable bereavement systems.

Our recent analysis from the wider Equitable Bereavement Care For All study has shown that bereavement in ethnically diverse communities is shaped by racism, cultural expectations, family and faith networks, and experiences of isolation [14]. The present paper builds on that work by focusing on the bereavement support system. To inform the provision, commissioning and funding of equitable bereavement care, we aimed to determine how formal bereavement services can better serve ethnically diverse communities. Specifically, we sought to identify barriers to and facilitators of access to equitable bereavement support, define key components of culturally safe and appropriate bereavement care, and develop a logic model and practice, policy and commissioning recommendations to support equitable bereavement support.

Methods

Study design

Study design and setting

Equitable Bereavement Care for All was a multi-phase national qualitative study in England comprising: semi-structured interviews and focus groups with bereaved people from ethnically diverse communities (WP1); collective case studies with bereavement service providers (WP2); and co-design workshops with national stakeholders (WP3). We drew on principles of experience-based co-design [15, 16] and a social constructivist approach [17]. The diverse, multidisciplinary research team had expertise in bereavement and ethnicity research, working with vulnerable populations, patient and public involvement (PPI), and qualitative research.

WP1 and WP2 data were collected between January and October 2024, and WP3 workshops held between March and July 2025. WP1 study sites were London, Sheffield, Leicester and Luton. WP1 findings on bereavement experiences and the development of the Culturally Informed Ecological Model of Grief are reported separately [14]. The study is reported in accordance with COREQ guidelines [18].

In this study, “ethnically diverse” refers to self-identifying with an ethnic group other than white British. The term was adopted after patient and public involvement (PPI) contributors described terms such as “minority” or “minoritised” as stigmatising; we retain ‘minoritised’ where citing or discussing existing literature that uses this terminology.

Sampling and recruitment

WP1: In WP1, we used maximum variation sampling [19] to recruit bereaved adult participants across the four sites, aiming for diversity in ethnicity (reflecting the English census), age, sex, religion, and nature of death. Recruitment focused on Black African, Black Caribbean, Chinese, Indian, Bangladeshi, Pakistani and Polish communities, and was supported by multilingual Community Researchers and interpreters [20, 21], who recruited participants via community organisations and networks. Key contacts, such as heads of community organisations and religious leaders, passed on recruitment materials and sought verbal consent for the study team to contact interested potential participants. Additional recruitment methods included word-of-mouth, social media, emails, posters, and through personal and professional networks. Potential participants were informed that the study’s aim was to understand bereavement experiences among ethnically diverse communities and improve support services.

Recruitment was informed by the Respect–Trust–Equity model [21], a culturally safe [22], asset-based framework for equitable participation in health research, co-designed by the study team with community researchers and PPI contributors and applied prospectively in this study. Grounded in anti-racist practice, it positions inclusion as an institutional responsibility rather than a community deficit, and operationalises respect for cultural and religious practices, institutional trustworthiness, and equity of access to participation (e.g. multilingual Community Researchers and flexible, community-based data collection). Full recruitment methods are reported elsewhere [14].

WP2: Participating bereavement support services were initially selected based on responses to a short survey circulated through national and local networks, social media and targeted invitations via community groups. Sampling aimed for diversity in service size, type and geographical location and inclusion of services that had developed or implemented effective and/or innovative approaches to providing support. Additional services were approached outside of the survey to help address gaps in the types of services that had responded and ensure diversity in these characteristics.

WP3: Participants were recruited through national and local networks spanning health services, bereavement organisations, and policy and commissioning roles, supplemented by targeted invitations to community organisations and bereaved participants who had taken part in WP1. Sampling aimed for diversity in role, sector, and ethnic background. A subsequent hybrid dissemination event (July 2025) brought together community researchers, bereaved individuals, and stakeholders from bereavement organisations, hospices, palliative care services, and national bodies representing all work packages.

Data collection

WP1: We conducted semi-structured interviews and focus groups with bereaved participants to explore awareness, accessibility and experiences of bereavement support. Data were collected face-to-face, by telephone, or online, in English or other languages preferred by participants, using topic guides developed with PPI representatives and stakeholders. Interviews and focus groups were audio-recorded, and researchers made field notes. We collected demographic information to contextualise the sample.

WP2: In parallel, we conducted semi-structured interviews with bereavement support providers from the 12 participating services, exploring barriers to and facilitators of equitable bereavement support and examples of innovative practice. Interviews were conducted in person or online. We also collected documentary material from each service, including webpages, leaflets and referral guidance.

WP3: In WP3, we held four online workshops with bereaved people, service providers, policy and commissioning stakeholders, and PPI members to refine findings, recommendations and a logic model for equitable bereavement support. At the final hybrid event, we screened the study film, reviewed provisional recommendations, and refined their language, ordering, and priorities through structured group discussion. Notes were taken by the research team to capture key views and perspectives.

All participants gave written or recorded verbal informed consent. Interviews and focus groups were transcribed, translated where necessary and anonymised prior to analysis.

Analysis

In the first phase of analysis, WP1 and WP2 datasets were analysed separately:

WP1 data were analysed using Framework Analysis [23], reported in full elsewhere [14]. Analysis combined inductive and deductive coding and focused on bereavement experiences, barriers and facilitators to support, and potential solutions.

WP2 data were analysed using reflexive thematic analysis [24, 25]. Interview transcripts were read for familiarisation before initial coding. Transcripts were coded iteratively, using both inductive and deductive approaches, with documentary materials analysed alongside interview data. Preliminary codes and interpretations were discussed and refined among the research team.

In a second phase, WP1 and WP2 findings were integrated using directed thematic analysis, guided by Levesque et al.’s patient-centred access to healthcare framework [26]. The framework conceptualises access as a dynamic interaction between service and system characteristics and people’s capacities to identify, seek, reach, afford and engage with care (Fig. 1).

Fig. 1.

Conceptual diagram of barriers to bereavement support, adapted from Levesque et al. (2013) [26]

Applying this model to bereavement support, accessibility depends on five supply-side determinants: approachability (the extent to which services can be identified and understood by those in need), acceptability (cultural and social factors determining the possibility for people to accept bereavement services), availability and accommodation (referring to the physical presence and timeliness of services and the extent to which they are organised to meet clients’ needs), affordability (financial accessibility in terms of both direct costs and indirect/opportunity costs), and finally, appropriateness: how well the services provided align with bereaved people’s support needs, including the quality and continuity of care.

Simultaneously, five corresponding abilities of bereaved persons interact with the dimensions of accessibility to generate access to formal bereavement support. The ability to perceive symptoms or risks refers to the capacity to recognise support needs and understand that care is available (complementing the notion of approachability). The ability to seek involves having the autonomy, awareness, motivation and capacity to actively look for care (relating to acceptability). The ability to reach includes the physical capacity, mobility, and access to transport necessary to get to services (complementing availability and accommodation). The ability to pay reflects the financial means to afford care without burden, interacting with affordability. Finally, the ability to engage represents the capability and willingness to participate in care and sustain involvement throughout the process, related to appropriateness.

By framing access as the interaction between supply-side dimensions of access and demand-side abilities, this model captures the complexity of real-world access processes. In this study, it was selected as it fitted well with the WP1 and WP2 data and provided a structure for the analytic triangulation of bereaved participants’ and service providers’ perspectives and the narrative of findings.

In a final phase, WP1 and WP2 findings were considered alongside WP3 stakeholder contributions. Workshop notes were summarised thematically to refine interpretations, develop an integrated logic model, and generate recommendations for equitable bereavement support.

Results

Participants

In WP1, 121 bereaved people from 13 ethnic backgrounds took part. Sixty-nine per cent were first-generation migrants, 55% spoke English as an additional language, and 38% had primary or secondary education only (Table 1; full details in [14]).

Table 1.

WP1 participant characteristics

Characteristics (n = 121)	n	%
Sex
Female	89	73.6
Male	32	26.4
Age
21–40	36	29.8
41–60	61	50.4
61–80	23	19.0
81 or over	1	0.8
Ethnicity
Bangladeshi	28	23.1
Black African	19	15.7
Pakistani	20	16.5
Chinese	16	13.2
Indian	12	9.9
Black Caribbean	8	6.6
Any other Asian background	7	5.8
Any other Black, Black British, or Caribbean background	3	2.5
Any other White background	3	2.5
Any other Mixed or multiple ethnic background	1	0.8
Arab	1	0.8
White - Irish	1	0.8
White and Asian	1	0.8
Missing	1	0.8
Place of birth
Outside the UK	83	68.6
UK	35	28.9
Missing	3	2.5
First language spoken
English	55	45.5
Bangla	20	16.5
Cantonese	20	16.5
Polish	3	2.5
Gujarati	3	2.5
Punjabi	2	1.7
Yoruba	2	1.7
Arabic	1	1.7
Chinese	1	0.8
Hindi	1	0.8
Mandarin	1	0.8
Somali	1	0.8
Urdu	1	0.8
Urdu/Punjabi	1	0.8
Missing	9	7.4
Faith/religion
Muslim	59	48.8
Christian	35	28.9
No religion	13	10.7
Hindu	9	7.4
Sikh	4	3.3
Buddhist	1	0.8
Highest education level
Primary school	13	10.7
High School/Secondary School completed/diploma	33	27.3
Bachelors/master’s level	66	54.5
Doctoral Level	7	5.8
Missing	2	1.7

In WP2, we interviewed 23 key informants linked to 12 bereavement services (Tables 2 and 3). These included larger services that had either developed (or were developing) methods of ensuring their ‘mainstream’ services were inclusive and accessible for ethnically diverse communities, or had developed faith-, ethnicity- or culturally-specific services to sit alongside the mainstream support they offered. We also spoke to participants from smaller ‘by and for’ services that were established, led, designed, and delivered by specific ethnically diverse communities and had specific expertise on the needs of their service users.

Table 2.

Characteristics of WP2 services

ID	Type of organisation	Location	Clients/month	% of clients from ethnically diverse communities
1	Children’s hospice	West Midlands	> 81	> 20
2	Third sector counselling service	London	21–40	> 20
3	Baby loss charity	National	> 81	Not known
4	NHS chaplaincy service	West Midlands	> 81	> 20
5	Hospice	North East	61–80	< 5%
6	Third sector carer support service	London	> 81	> 20
7	Refugee counselling charity	South East	41–60	> 20
8	Volunteer run, community-specific peer support group	London and global	21–40	> 20
9	Faith-specific counselling charity	London and surrounding	41–60	5–10
10	Hospice	East Midlands	> 81	< 5%
11	Hospice (with faith-specific offshoot projects)	London	41–60	> 20
12	Third sector mental health support service for ethnically diverse communities	South West	21–40	> 20

Table 3.

WP2 participant characteristics (self-defined)

ID	Ethnicity	Age	Gender	Religion/faith	Role
1.1	White British	66	Female	Not specifically but spiritual in broadest sense	Staff
1.2	White British	56	Female	Not specifically but spirituality is important	Staff
1.3	White British	64	Female	Loosely Christian	Staff
1.4	Indian	41	Male	Hindu	Service user and volunteer
2.1	Black Caribbean	60	Female	Christian	Founding volunteer
3.1	Black Caribbean	40	Female	Christian	Staff
3.2	White British	50	Female	None	Staff
3.3	South Asian	Missing	Female	Hindu	Staff
3.4	Indian	Missing	Female	Missing	Service user and volunteer
4.1	White British	60+	Male	Christian	Staff
4.2	Pakistani descent	32	Female	Muslim	Staff
4.3	Pakistani	65	Female	Muslim	Staff
5.1	White British	71	Female	None	Staff
5.2	White British	59	Female	Spiritual	Staff
6.1	White Irish	59	Male	Christian	Staff
7.1	White British	76	Female	None	Volunteer
8.1	African Caribbean	55	Cisgender	Spiritual	Founding volunteer
8.2	Black Caribbean	50	Male	Spiritual	Founding volunteer
9.1	White British	80	Female	Jewish	Volunteer
10.1	White British	59	Female	None	Staff
11.1	Bangladeshi	48	Female	Islam	Staff
12.1	African Caribbean/ Black British	64	Female	Christian	Staff
12.2	Black Caribbean	51–60	Female	Christian	Staff

In WP3, 53 stakeholders participated in four online workshops, comprising bereaved relatives (n = 20), health service and bereavement organisation representatives and policy and commissioning stakeholders (n = 26), and community researchers (n = 7). The subsequent hybrid dissemination event was attended by 29 participants: community researchers (n = 5), bereaved individuals (n = 5), and stakeholders from bereavement organisations, hospices, palliative care services, and national bodies (n = 19) (Table 4).

Table 4.

Workshop participants and content

Workshop (format)	Participants (n=)	Participant demographics	Activities
Workshop 1 (online)	Bereaved relatives, n = 11	Ethnicity: 7 Asian, 3 Black, 1 Mixed Gender: 8 women, 3 men	- Introductions, ground rules, wellbeing guidance. - Short film shown to prompt reflection/discussion. - Breakout brainstorming on service improvements (prioritised High/Medium/Low). - Presentation of preliminary findings from WP1 (accessibility, acceptability, appropriateness). - Structured activity to develop recommendations for improving access.
Workshop 2 (online)	Stakeholders from health services, bereavement organisations, policy/commissioning roles, n = 14	Ethnicity: 2 Black, 1 Asian, 11 white British Gender: 9 women, 5 men.	- Same agenda/structure as Workshop 1 but tailored to professional stakeholder perspectives. - Discussions focused on systemic and organisational enablers for equitable bereavement support.
Workshop 3 (online)	22 attendees:11 bereaved individuals, 11 stakeholders	Ethnicity: 4 Black, 9 Asian, 1 Arab, 1 Mixed, 7 white British Gender: 16 women, 6 men	- Centred on a persona case study (“Amina Begum,” a British Pakistani Muslim woman navigating bereavement). - The case study illustrated cultural expectations, ceremonial practices, and taboos around mental health. - Guided thematic discussions: * Mental health & cultural taboos. * Building trust and cultural safety. * Designing accessible/acceptable services. * Improving communication and outreach. * Filling gaps (community spaces, overlooked needs). - Co-creation discussion on sustainable, co-designed bereavement support models.
Workshop 4 (online)	21 attendees: 9 bereaved individuals, 12 stakeholders	Ethnicity: 3 Black, 7 Asian, 1 Arab, 1 Mixed, 9 white British Gender:16 women, 5 men.	- Focused on implementation strategies. - Structured discussions around: * Raising awareness (destigmatising grief and taboo deaths). * Reforming existing services (acknowledging racism, moving beyond Eurocentric grief models, engaging GPs). * Working with communities (trusted intermediaries, embedding support in familiar spaces). - Emphasis on actionable, community-informed steps for service and policy improvement.
Workshop 5: dissemination and co-refinement event (hybrid)	29 attendees: community researchers (n = 5), bereaved individuals (n = 5), and stakeholders from bereavement organisations, hospices, palliative care services, and national bodies (n = 19))	Ethnic and gender breakdown not fully recorded for this event	- Screening of the dissemination film. - Presentation of provisional recommendations. - Structured feedback and group discussion to refine language, ordering, and priorities.

Exemplifying data extracts (labelled ‘Q’) are cross-referenced in Supplementary Table 1 (S1). Identified differences in participant perspectives are highlighted in the narrative.

Findings

We first present WP1 and WP2 findings regarding barriers to equitable bereavement support: cross-cutting themes followed by supply-side and demand-side determinants of access. We then detail facilitators and innovation in equitable bereavement support. The final section describes WP3 findings from stakeholder consultation.

WP1 and WP2: bereaved people and service provider perspectives

Barriers to equitable bereavement support arose across the access pathway but were concentrated mainly on the supply side of the bereavement support system (Fig. 1). Demand-side barriers for bereaved participants from ethnically diverse communities were also identified, especially around awareness, cost and sustained engagement, but these were often shaped by how services were designed, presented and delivered.

In both datasets, racism and intersectionality emerged as cross-cutting themes influencing whether bereaved people from ethnically diverse communities could identify, trust, reach and benefit from support. Lifetime experiences of racism shaped multiple dimensions of access, including trust in services, referral and signposting, and willingness to seek and engage with support (Q1, Q2). Participants described how racism affected whether bereaved people were signposted or referred to support (Q3), and how repeated negative experiences in diverse settings and institutions had eroded trust in healthcare systems and services at the end of life and in bereavement (Q4). Fear of racism, discrimination and unsafe practice was itself a major barrier to access, especially for people with insecure immigration status (Q5). A participant from service 7, which provides counselling to refugees through professional referral, described how referrers’ attitudes towards people seeking asylum could determine whether refugees were able to access the service at all (Q6). For some service providers, personal experiences of racism in bereavement settings had prompted them to create safer spaces of support (Q7, Q8).

Intersectionality was a second cross-cutting theme. Participants described how ethnicity interacted with faith, age, gender, socio-economic and other factors to shape bereavement experiences and access to support (Q9). These intersecting factors often compounded exclusion and made standardised models of support feel insufficient or inappropriate.

Supply-side determinants of access

Most barriers described by bereaved participants and providers related to the supply-side determinants of access: whether services felt culturally and socially acceptable, were available and organised in ways that met people’s needs, offered support that felt appropriate, could be identified and understood, and were financially accessible.

Cultural norms, stigma, trust and belonging (acceptability)

Bereaved participants described several barriers related to the acceptability of formal bereavement support. In some communities, talking about emotional distress or mental health problems was stigmatised, and seeking support outside the family or community during difficult times was discouraged (Q10). Some deaths and losses, including cancer, suicide, and baby or child loss, were described as particularly difficult to discuss openly or seek help for due to fears or experiences of encountering social stigma, assumptions and lack of understanding (Q11, Q12). Some bereaved participants said that, because of cultural expectations around who should provide support, seeking help beyond immediate family or networks did not feel possible (Q13). Providers echoed these accounts (Q14).

Some providers referred to the idea that ethnically diverse communities “look after their own” and therefore do not seek formal support (Q15), but others challenged this assumption as an oversimplification that obscures unmet need and uncertainty about what support is available or appropriate (Q16). Providers also noted that ethnically diverse bereaved people may not feel that services run mainly by white or majority-faith populations are intended for them (Q17).

Service capacity, language and organisational access (availability and accommodation)

Bereaved participants and providers described limited service capacity as a major barrier, with long waiting lists repeatedly mentioned (Q18). Participants also highlighted language barriers and limited flexibility in how and when support was delivered. The availability of appropriate support was shaped not only by whether services existed, but by whether people would encounter staff, volunteers or other service users with similar ethnic or cultural backgrounds and therefore feel they belonged (Q19, Q20).

Many providers recognised that services need to examine their own culture, structures and assumptions to provide accessible and acceptable support to ethnically diverse communities, and highlighted several organisational barriers to doing this. Lack of staff diversity was a particular problem in larger generalist services, which faced difficulties attracting and retaining a diverse workforce (Q21). By contrast, participants from specialist services supporting ethnically diverse communities did not report these challenges, because they already offered a more diverse workforce in which ethnically diverse staff would not need to ‘fly the EDI flag’ alone (Q22). Where teams were not diverse, responsibility for equity work often fell disproportionately on a small number of ethnically diverse staff, contributing to stress, burnout and limited capacity. Participants from service 3 described both capacity pressures and the frustration experienced when attempts to improve practice were not backed by those with organisational power (Q23, Q24). Participants also noted the emotional impact of bereavement support work, especially in overstretched services, and the importance of staff and volunteer self-care (Q25).

Larger services, especially those based in hospices, often depended on wider organisational allocations or fundraising income (Q26), relied heavily on volunteers and goodwill (Q27), and reported workload pressures among paid staff (Q28). Providers also reported cuts to services that disproportionately affected ethnically diverse communities, for example the ending of burial provision for miscarriages. Smaller specialist services were often in even more precarious positions, with some providing bereavement support without dedicated funding at all.

Inequitable funding processes were a major barrier for smaller “by and for” services. One provider from service 8 described how funding tended to flow to larger organisations (Q29). Another explained how the ways funding is advertised, awarded and evaluated can disadvantage smaller community organisations (Q30).

Fit between support offered and people’s needs (appropriateness)

Participants described a poor fit between support offered and support wanted; for example, some bereaved people reported that they were offered medication when what they wanted was emotional, practical or culturally meaningful support, potentially reflecting medicalised responses to grief (Q31, Q32). Providers also identified organisational barriers to appropriateness, including limited commitment to equity and inclusion (Q33) and challenges in collecting meaningful demographic and experience data within confidential services for vulnerable clients (Q34). Participants further identified gaps in staff and volunteer knowledge and skills, including understanding how faith, culture and ethnicity shape bereavement experiences (Q35), and the ability to speak relevant community languages (Q36).

While some participants felt these gaps could partly be addressed by asking service users about their needs (Q37), others, particularly those from smaller specialist services, stressed that repeatedly asking clients to educate services imposed an unfair burden on bereaved people (Q38). Providers recognised the need for confidential therapeutic support but, where staff or volunteers able to speak community languages were lacking, highlighted the ethical and practical difficulties of delivering this through interpreters (Q39), as well as the resources required to provide high-quality non-English language support (Q40). Finally, although providers recognised the value of community partnership, some described limited organisational commitment to engagement (Q41). Participants from smaller specialist services described common mistakes made by larger organisations, including extractive relationships and one-off engagement exercises rather than ongoing, reciprocal partnerships (Q42).

Visibility, naming and signposting of services (approachability)

Both bereaved people and service providers attributed low awareness of bereavement support to poor or absent signposting in ethnically diverse communities (Q43). Some also pointed to the language and branding used by services: hospices’ use of Christian names for services (Q44), and terms such as “chaplain”, could discourage engagement by signalling that services were not intended for everyone (Q45).

Travel, poverty and opportunity costs (affordability)

Providers from both smaller and larger organisations frequently described travel costs and the time required to get to support as barriers to access (Q46). Participants also highlighted the intersection between ethnicity and poverty, and the way economic disadvantage could intensify exclusion from support (Q47).

Demand-side determinants of access

Demand-related barriers were less prominent than supply-side determinants. Where they arose, they concerned whether bereaved people recognised a need for support, knew what was available, felt able to seek help, could physically or financially reach services, and were willing and able to remain engaged.

Recognising need for support (ability to perceive)

A small number of participants preferred to cope with bereavement alone, seeing it as a personal matter they did not want to discuss with others (Q48). Other participants highlighted how linguistic differences meant the terms ‘bereavement’ or ‘grief’ were not always understood, or formal support after a death seen as an option.

Awareness, confidence and help-seeking (ability to seek)

Bereaved participants often had limited awareness of available support (Q49, Q50), and providers noted that people may be less likely to seek support when they do not see others from their own community using it (Q51, Q52). Even when services were known about, bereaved people were not always confident that they would be appropriate, respectful or culturally compatible (Q53, Q54). One provider also reported lower referral rates from more socioeconomically disadvantaged communities (Q55).

Geography, transport and displacement (ability to reach)

Distance from services was reported as a barrier, particularly where support could be accessed only via public transport. A participant from service 7, which provides counselling for refugees, further described how asylum processes can result in people being moved to a different area with no notice and no control over the decision. This can abruptly end support, with no guarantee that it will resume in the new location (Q56).

Financial constraints and assumptions about cost (ability to pay)

Economic barriers, and their interaction with ethnicity, were also discussed (Q57). Some bereaved people, aware of long waiting lists, wanted to access private support but found it unaffordable. Others appeared to assume that therapy would necessarily involve payment and therefore did not pursue support at all (Q58). One provider noted that these barriers had worsened during the cost-of-living crisis.

Trust, safety and sustained participation (ability to engage)

Bereaved participants stressed that engagement with formal support depended heavily on trusted recommendations from within the community, which built confidence in services and established initial links with them (Q59). Providers similarly emphasised the importance of trust, confidentiality and safe spaces if ethnically diverse bereaved people were to engage with support and remain involved over time (Q60).

Facilitators and innovation in equitable bereavement support

Participants described a range of facilitators and examples of innovation that addressed access barriers and helped define more equitable bereavement support. These were categorised into five themes: Organisational and strategic foundations; Staff and volunteer recruitment, employment and training; Knowledge and approach; Community linkage and referral; Safe, appropriate support.

Organisational and strategic foundations

Service providers described two different starting points for equitable bereavement support (Fig. 2). Some emphasised the need to recognise structural inequities, racism and the difference between equality and equity (Q61-Q63). A participant from service 3, for example, emphasised the importance of acknowledging that spaces of support have not always felt welcoming or inclusive to ethnically diverse people (Q64). Others placed more emphasis on flexible, person-centred care, which they believed could accommodate needs related to ethnicity, faith and other characteristics (Q65, Q66). A participant from service 12 emphasised that, whatever model was adopted, bereavement services must take the needs of marginalised communities into account explicitly (Q67). Providers also highlighted the importance of organisation-wide commitment to equity and inclusion, led from senior levels and reflected in strategy, processes, and data collection and use (Q68-Q71).

Fig. 2.

Overview of the different models of ‘good practice’ suggested by participating services

Staff and volunteer recruitment, employment, and training

Providers stressed the importance of attracting and retaining diverse staff and volunteers to build services that felt appropriate and trustworthy to ethnically diverse communities (Q72). Some services had introduced dedicated community engagement posts aimed at improving links with ethnically diverse communities and helping to embed equity and inclusion across the wider organisation (Q73). Training and knowledge-sharing on EDI and privilege were also seen as necessary to build a workforce capable of providing culturally appropriate and accessible support (Q74). Participants also emphasised the value of staff with lived experience of bereavement in particular faith or cultural contexts, and of recognising life experience and community expertise alongside formal training (Q75–Q79).

Knowledge and approach

Providers described ongoing learning, reflexivity and willingness to adapt practice as central to equitable care (Q80, Q81). Participants from smaller specialist services emphasised the need to truly understand the communities they served, including the effects of trauma and displacement (Q82–Q84). Bereaved participants stressed the need for practical as well as emotional support, including information about benefits, financial support, time off work and assistance with after-death rituals (Q85–Q87). Some providers noted that bereavement support does not always need to take the form of formal therapy and may instead be offered through more informal spaces such as coffee mornings for bereaved people.

Community linkage and referral

Bereaved participants and providers emphasised the importance of making services visible. This included ensuring that hospital chaplaincy services and community leaders were aware of relevant support and able to signpost people to it, and using written materials, community organisations, community radio, religious institutions, open days, online forums and social media to advertise services, while recognising digital literacy barriers (Q88–Q92). Participants from smaller specialist services reported that formal advertising was often less important because communities themselves spread the word about trusted support (Q93).

Many bereaved participants wanted support to be available in familiar community spaces, including places of worship, through collaboration with trusted local figures (Q94–Q96). Providers from “by and for” services described advantages in working through existing community relationships and delivering support in community venues or homes (Q97–Q99). All the hospice-based services included had developed, or were developing, bereavement support in community venues, aiming to reach underserved groups (Q100, Q101). A community companionship model was described, in which someone from the bereaved person’s own community makes contact and helps establish an initial link to support; this was seen as particularly beneficial for people who were new to the UK (Q102).

The need for equitable partnership with community organisations and co-production with bereaved people from specific ethnically diverse communities was consistently highlighted (Q103). Participants argued that providers, commissioners and funders should recognise and invest in the expertise of smaller specialist organisations already working successfully with ethnically diverse communities (Q104). To facilitate access, multiple referral routes were recommended, including self-referral and referral through trusted professionals (Q105, Q106).

Safe, appropriate support

Participants described culturally safe support as support shaped by communities’ needs rather than standard service assumptions. This included support from “relatable people” (Site 4, P07, female, 21–40, Bangladeshi, Muslim), peer support, choice over format, and providers who understood participants’ faith, language, culture and wider social context (Q107–Q114). Language access was especially important: several services offered translated materials, interpreted calls or support in community languages, and participants stressed the value of being able to speak about bereavement in the language and vocabulary that felt most natural (Q115–Q117). Providers also described practical ways of making spaces feel safe, including attention to confidentiality, group size and composition, facilitation and power relations (Q118, Q119). They further stressed the importance of creating spaces in which bereaved people felt able to discuss historical and current racism and inequality, and the impact these had had on their experiences of loss (Q120). Finally, both bereaved participants and some providers argued that equitable bereavement support requires moving beyond Eurocentric models of grief commonly used by UK service providers, and making space for multiple cultural understandings of loss and coping (Q121).

WP3: stakeholder views

Stakeholder workshop participants broadly reinforced the WP1 and WP2 findings and highlighted priorities for policy, commissioning and service development. Racism and cultural safety emerged as the most urgent issue: participants argued that mainstream services often failed to recognise or address racism, undermining trust, and called for cultural safety rather than superficial cultural competence training. This entailed an organisational commitment to acknowledging structural racism, addressing historical exclusion, and creating spaces in which people feel safe, respected and heard. Participants also stressed the importance of equitable community partnership, calling for a shift from “using” community leaders as access points to working with them as equal partners. Recognising bereavement as a long-term process rather than a single event, participants rejected one-off interventions and short-term models of support, arguing instead for earlier and more sustained contact that could adapt to families’ changing needs over time and address societal and cultural stigma.

Stakeholders criticised many existing bereavement services as being shaped by white-centred models of grief that privilege individual therapy and neglect relational, collective or faith-based forms of support. They emphasised the need for service co-design with ethnically diverse communities, support embedded in familiar community settings, and accessibility in relation to language, cost, format and location. Communication, outreach and accountability were further priorities. Participants noted that terms such as “therapy” and “counselling” could deter engagement, whereas more familiar, culturally resonant language (“breaking bread,” “talking together”) could make support feel more approachable. They highlighted the value of advertising, publicity and outreach materials using community languages and culturally familiar imagery, and including visible diversity. Finally, stakeholders highlighted accountability as a neglected issue, calling for transparent complaint processes and clear evidence that feedback from bereaved ethnically diverse communities leads to change.

Findings from across the work packages are integrated into a logic model (Fig. 3).

Fig. 3.

Logic model for the provision of equitable bereavement support

Discussion

This rigorous, multi-perspective study provides the most comprehensive examination to date of the barriers to access to formal bereavement support experienced by people from ethnically diverse communities, and how services can tackle these inequities. Study findings, the co-produced logic model and recommendations provide a practical roadmap for services, commissioners and policymakers with implications for all high- and middle-income countries with diverse populations.

Using Levesque et al.’s patient-centred access to healthcare framework [26], we found that inequitable access to bereavement support is not adequately explained by individual help-seeking preferences or awareness alone. Rather, barriers were located predominantly on the supply side of the bereavement support system, particularly in relation to acceptability, appropriateness, approachability, and availability and accommodation. The framework also helped illuminate the interaction between supply-side conditions and demand-side abilities: limited awareness, uncertainty, mistrust, and difficulties sustaining engagement were often consequences of services that did not feel safe, relevant, recognisable or designed for ethnically diverse communities.

A cross-cutting finding was that racism was not a background context but a structuring feature of access to care. Participants described previous and anticipated experiences of racism as shaping referral, trust, and willingness to seek and remain engaged with support. An intersectional lens was also necessary to understand how ethnicity interacted with faith, gender, age, socio-economic status, language, and immigration status to produce layered forms of exclusion. Access to bereavement support is therefore not simply a matter of service availability, but is best understood as a relational and socially mediated process in which people assess whether support is culturally safe, practically reachable, and likely to meet their needs. In this respect, the study extends Levesque’s framework by showing how structural racism and intersectionality cut across multiple dimensions of access simultaneously rather than sitting within any single domain.

Bereaved people and service providers emphasised different barriers to and dimensions of access. Bereaved participants foregrounded the lived experience of access: whether support felt trustworthy, whether providers were relatable, whether services recognised faith, language and family context, and whether help extended beyond emotional support to practical, social and ritual needs. Providers, by contrast, were more likely to describe the organisational conditions constraining equitable care, including workforce diversity, leadership buy-in, training, funding, referral pathways, data collection, and community engagement. Providers in smaller specialist and “by and for” services often appeared closer to bereaved participants in their understanding of what culturally safe support required, whereas larger mainstream services were more likely to describe adaptation within existing models, including reliance on established ‘person-centred’ approaches. However, our findings suggest that approaches that do not openly recognise the impact of structural and historic racism [27–29], and do not prioritise cultural safety, are unlikely to tackle the barriers experienced by ethnically diverse communities.

Some of the inadequacies of current bereavement services highlighted in this analysis apply across the bereaved population; for example, help with information, advice and practical and administrative tasks, and support needs relating to perceived loss of purpose and dealing with loneliness and isolation [30]. Tackling these inadequacies in existing bereavement support would therefore benefit everyone. However, the impact of unmet needs in these areas might be exacerbated for bereaved people from ethnically diverse groups due to the compounding effects of institutional racism and societal discrimination.

This study contributes to a still limited evidence base on bereavement support for ethnically diverse communities. A 2021 systematic review [12] highlighted low awareness, variability in support, limited culturally appropriate provision, and sparse evidence on outcomes and experiences. Our findings confirm those concerns, but also show how inequities are produced across the access pathway, particularly through the acceptability, approachability, appropriateness and organisation of services. They also align with a UK mixed-methods study of bereavement services [13], which reported unmet need among minoritised ethnic communities, incomplete ethnicity data collection, and the importance of outreach, language accessibility, staff representation and co-production. The present analysis builds on our companion WP1 paper [14], which showed that bereavement among ethnically diverse communities is shaped by racism, cultural expectations, family and faith networks, and experiences of coping alone. Here, we describe how formal support systems often fail to align with those lived realities. Our findings also support and extend recent qualitative research with Black Caribbean communities in the UK [11], showing that structural racism, cultural misunderstanding, and the mismatch between individualised white British grief norms and community-based experiences of loss recur across diverse groups and operate at multiple points in the access process.

The findings and logic model have clear implications for practice, commissioning, policy and research internationally, summarised in Table 5. They support a shift away from both deficit accounts in which ethnically diverse communities are framed as reluctant to seek support, and essentialist assumptions that communities ‘look after their own’, and towards the ways services themselves are organised, advertised, funded, staffed and configured. Recent work on the decolonising of bereavement services argues that white-led services cannot become more inclusive without confronting the assumptions of whiteness and universal grief models on which they are built [29, 31]. Our findings are consistent with this critique but extend it empirically by showing how such misalignment is experienced and by identifying organisational, relational and funding changes that could make support more equitable. In practice, this means moving beyond generic cultural competence towards organisationally-embedded cultural safety and anti-racist practice, with diverse workforces, community connector roles, support in community languages and trusted settings, and provision that addresses practical, social, spiritual and emotional needs. Taken together, our recommendations amount to a radical recasting of the predominantly clinical, therapeutically oriented model of bereavement care rather than a set of discrete service improvements. For a typical mainstream bereavement service organised around referral-based, clinic-located, English-language counselling, implementation would mean, for example, moving towards community-partnered, multilingual and holistic provision: support delivered in trusted community settings, co-designed with the communities served, and extending beyond therapy to practical and administrative help.

Table 5.

Recommendations arising from study findings, by audience

Audience	Recommendations
Bereavement services and practitioners	• Embed cultural safety and anti-racism across organisational practice, including mandatory staff training and development, reflective supervision, leadership accountability, and review of service policies, language and environments. • Employ community connectors to bridge services and communities. • Deliver bereavement support in trusted community spaces such as mosques, temples, churches, community centres, and General Practice surgeries. • Move from individualistic, white-centred models of grief to relational, collective, faith-sensitive and culturally informed approaches, e.g. the Culturally Informed Ecological Model of Grief (14). • Provide support in community languages, with investment in high-quality interpreting and translated materials where needed. • Offer practical as well as emotional support, including help with financial, procedural, workplace and ritual issues after death.
Commissioners	• Equitable distribution of funding for grassroots and community led, “by and for” bereavement organisations. • Commission bereavement services to work with communities, not just reach them. • Require services to ethically monitor access, experience and outcomes by ethnicity and other equity markers, alongside activity data. • Support diverse workforce recruitment and progression, including leadership roles. • Commission multiple referral routes, including self-referral and referral through community organisations, faith leaders, social prescribers and primary care. • Fund sustained and flexible models of support, rather than short-term or one-off provision alone. • Resource ongoing community partnership and co-production.
Policy-makers	• Acknowledge and act on racism as the most consistent barrier to bereavement equity. • Mandate cultural safety and anti-racism as part of national service standards. • Fund national community-led campaigns to challenge stigma and misconceptions about grief. • Develop a national framework for equitable bereavement care (e.g. a National Equitable Bereavement Care Charter), with accountability mechanisms and community representation. • Recognise bereavement inequities within wider health inequalities strategies. • Ensure accessible, safe complaints and feedback routes for bereaved families experiencing inadequate or discriminatory care.
Research	• Use and resource inclusive, community-partnered research approaches that build trust, support equitable recruitment, and reduce exclusion from bereavement research; for example the Respect-Trust-Equity model(21) used in this study to ensure inclusive recruitment. • Resource Community Researcher roles with secure contracts, structured support, and recognition(20). • Address under-represented groups (men, Roma, Traveller, Arab, Jewish) through targeted strategies. • Investigate which models of bereavement support are most effective, acceptable and culturally safe for different communities and family structures. • Examine intersectionality and how racism, language, poverty, migration status and faith interact across the bereavement pathway. • Evaluate partnership models between mainstream services and smaller community-led organisations. • Evaluate ongoing progress in tackling inequities, e.g. via testing components of the logic model (Fig. 3).

In the UK context, our findings and recommendations align with the NHS 10 Year Plan neighbourhood health approach [32], which aims to improve health equity through proactive, community-based care and multi-disciplinary collaboration across organisational boundaries. However, the neighbourhood health framework focuses primarily on organisational structures and partnerships, whereas several of our recommendations concern the more difficult task of linking formal services with informal networks of community support. Public health approaches to bereavement, including compassionate communities initiatives, offer strategies for building these links and could support implementation [5, 6].

A key strength of the study was the use of the Respect–Trust–Equity model, which enabled recruitment of a large group of participants who are often excluded from bereavement research, including first-generation migrants and people who speak English as an additional language [21]. Limitations must also be acknowledged. Although the study included a large and diverse qualitative sample, it was conducted in England and findings may not transfer directly to other settings. Some communities were less well represented than others, including men and some smaller or more marginalised groups, and the category of “ethnically diverse” necessarily brings together populations with distinct histories, practices and support needs. Service provider perspectives were drawn from purposively selected services, including services already engaged in equity work, and may not reflect the full range of practice across the sector. Finally, WP3 drew on workshop notes rather than fully transcribed qualitative datasets, with stakeholder contributions used mainly to refine and prioritise findings rather than to generate a parallel analytic account. These limitations notwithstanding, the study provides a robust account of access to bereavement support across multiple participant groups and service contexts.

Conclusions

This study demonstrates that inequitable access to bereavement support for ethnically diverse communities is rooted primarily in the design, organisation and cultural orientation of services and the wider bereavement support system. Its findings move the field beyond documenting that inequities exist, towards understanding how they are produced across the access pathway and what organisational, relational and funding changes are needed to address them. Using Levesque et al.’s framework [26], we demonstrated that access is a dynamic and relational process in which supply-side conditions strongly shape people’s ability to identify, trust, reach and engage with support. Translating these findings into equitable bereavement support will require more than marginal adjustments to mainstream provision. System-level change will require sustained investment in community-led provision, accountability mechanisms, and genuine partnership with ethnically diverse communities.

Supplementary information

Below is the link to the electronic supplementary material.

Abbreviations

FG

focus group number

P

interview participant number

PPI

Patient and Public Involvement

UK

United Kingdom

Author contributions

Study conceptualization: CRM, RK, EH, ZI, JK, GR, LES, SB Data curation: CRM, EF, AOO, NH-K, RS, NK, SS, RM, GG-S, MA, CW, SN, ZI, SB, JB, EH, LES Formal analysis: LES, JB, EH, CRM, EF, AOO, NH-K, TK, RS, NK, KB, ZI, JK, GR, SB Writing (original draft): LES and JB Writing (review & editing): LES, JB, CRM, EF, AOO, NH-J, TK, RS, NK, SS, RM, GG-S, MA, CW, SN, RK, KB, EH, ZI, JK, GR, SB. Funding acquisition: CRM, RK, EH, ZI, JK, GR, LES, SB All authors read and approved the final manuscript.

Authors’ social media handles

Lucy E. Selman – BlueSky: @lucyselmasky.socialn.b

Catriona R. Mayland – BlueSky: @catrionamayland.bsky.social

Jonathan Koffman – BlueSky: @jonathankoffman.bsky.social

Sabrina Bajwah – BlueSky: @sbajwah.bsky.social

Emily Harrop – BlueSky: @emilyharrop10.bsky.social

Authors’ social media handles

Lucy E. Selman – LinkedIn: https://www.linkedin.com/in/lucy-selman-63a15357/

Sabrina Bajwah – LinkedIn: https://www.linkedin.com/in/sabrina-bajwah/

Catriona R. Mayland – LinkedIn: https://www.linkedin.com/in/catriona-r-mayland-09825736a/

Emily Harrop – LinkedIn: https://www.linkedin.com/in/emily-harrop-6a9b6b382/

Gurch Randhawa – LinkedIn: https://www.linkedin.com/in/gurch-randhawa-phd-ffph-dl-71aa9734/

Zoebia Islam – LinkedIn: https://www.linkedin.com/in/dr-zoebia-islam-94077485/

Adejoke O. Oluyase – LinkedIn: https://www.linkedin.com/in/adejoke-obirenjeyi-oluyase-5b171943/

Nikel-Shaniece Hector-Jack – LinkedIn: https://www.linkedin.com/in/nikel-hector-jack-123a51290/

Rukia Saleem – LinkedIn: https://www.linkedin.com/in/rukia-saleem-1b940b111/

Naureen Khan – LinkedIn: https://www.linkedin.com/in/naureen-khan-a8236149/

Jonathan Koffman – LinkedIn: https://www.linkedin.com/in/koffman-dr-jonathan-96b66798/

Funding

This study is funded by the National Institute of Health and Care Research (NIHR) Policy Research Programme (NIHR204676). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Data availability

Anonymised datasets used and analysed during the current study are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

Ethical approval to conduct the study was obtained from King’s College London RESCM-23/24-39898 and fully informed consent was obtained from all participants.

Consent for publication

Participants gave consent for anonymised quotations to be used.

Competing interests

Dr. Sabrina Bajwah is a guest editor for the BMC Medicine palliative care and medicine collection.