How to tackle inequities in bereavement support for ethnically diverse communities: a national qualitative study using experience-based co-design.
13 affiliations
- 1Palliative and End of Life Care Research Group, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, BS8 2PS, UK. [email protected].
- 2Palliative and End of Life Care Research Group, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, BS8 2PS, UK.
- 3School of Medicine and Population Health, University of Sheffield, Sheffield, UK.
- 4Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.
- 5Institute for Health and Well Being Research, University of Bedfordshire, Luton , UK.
- 6St Luke's Hospice, Sheffield, UK.
- 7LOROS Centre for Excellence Community Researchers, Leicester, UK.
- 8Sheffield Chinese Community Centre, Sheffield, UK.
- 9Patient and Public Involvement Representative, King's College London, London, UK.
- 10Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.
- 11LOROS Hospice Centre for Excellence, University of Leicester, Leicester, UK.
- 12Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.
- 13Marie Curie Research Centre, Division of Population Medicine, School of Medicine, Cardiff University, Cardiff, UK.
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.
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BibTeX
@article{selman2026tackle,
title = {{How to tackle inequities in bereavement support for ethnically diverse communities: a national qualitative study using experience-based co-design.}},
author = {Lucy E Selman and Jenny Birchall and Emily Fisher and Adejoke O Oluyase and Nikel-Shaniece Hector-Jack and Toslima Khatun and Rukia Saleem and Naureen Khan and Shirin Shahid and Riffat Mahmood and Gurpreet Grewal-Santini and Monika Afolabi and Candice Wang and Sarah Ng and Rashmi Kumar and Katherine Bristowe and Herbert Dunhill and Zoebia Islam and Jonathan Koffman and Gurch Randhawa and Emily Harrop and Catriona R Mayland and Sabrina Bajwah},
journal = {BMC medicine},
year = {2026},
month = oct,
doi = {10.1186/s12916-026-05254-4},
url = {https://europepmc.org/article/MED/42902353},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - How to tackle inequities in bereavement support for ethnically diverse communities: a national qualitative study using experience-based co-design.
AU - Lucy E Selman
AU - Jenny Birchall
AU - Emily Fisher
AU - Adejoke O Oluyase
AU - Nikel-Shaniece Hector-Jack
AU - Toslima Khatun
AU - Rukia Saleem
AU - Naureen Khan
AU - Shirin Shahid
AU - Riffat Mahmood
AU - Gurpreet Grewal-Santini
AU - Monika Afolabi
AU - Candice Wang
AU - Sarah Ng
AU - Rashmi Kumar
AU - Katherine Bristowe
AU - Herbert Dunhill
AU - Zoebia Islam
AU - Jonathan Koffman
AU - Gurch Randhawa
AU - Emily Harrop
AU - Catriona R Mayland
AU - Sabrina Bajwah
PY - 2026
DA - 2026/10/21
JO - BMC medicine
DO - 10.1186/s12916-026-05254-4
UR - https://europepmc.org/article/MED/42902353
AB - 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.
SN - 1741-7015
ER -