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.