Development of the 'Culturally Informed Ecological Model of Grief' - a national qualitative study of bereavement experiences among ethnically diverse communities.

Abstract

Background: Among people from ethnically diverse communities, evidence regarding bereavement experiences and support needs is limited; there are known inequities in access to formal bereavement support. Our study aimed to address this gap, provide new theoretical insights into grief, and inform more equitable bereavement support services.

Methods: A national, qualitative study was conducted with bereaved participants purposively sampled by ethnicity, age, sex, relationship to the decedent, and nature of death. Community Researchers from ethnically diverse communities, trained in research methods, were integral to recruitment, data collection and analysis. Focus groups and interviews were conducted in participants' preferred language and analysed using framework analysis. A novel conceptual grief model was developed through inductive analysis.

Results: One-hundred and twenty people (female = 88 (73.3%), aged 21-81 years) participated in nine focus groups (n = 67 participants) and 53 one-to-one interviews. Participants were of Bangladeshi, Indian, Chinese, Pakistani, Black African, Black Caribbean, Arab, White Irish or Polish ethnicity. They were bereaved due to adult or child deaths, sudden and anticipated deaths. Sixty-nine per cent were first-generation migrants, 55% had a first language other than English, and 38% did not have access to education beyond primary or secondary school.

Conclusions: Racism was evident across multiple settings and closely intertwined with bereavement, compounding the emotional burden of grief. This study represents the largest qualitative investigation of bereavement among ethnically diverse communities in UK healthcare to date, providing a robust evidence base for improving equity in support. Bereavement services must prioritise cultural safety and actively address structural racism. The 'Culturally Informed Ecological Model of Grief' offers a new framework guiding more equitable bereavement support, relevant across national and international contexts.