Inequities in access to bereavement support in the UK persist, new research finds

Inequities in access to bereavement support in the UK persists, new research finds

New research has shown there continues to be inequities in access to bereavement support in the UK. In particular, even though minoritized ethnic communities were disproportionately affected by the COVID-19 pandemic, overall, proportions of ethnically minoritized clients did not increase, according to bereavement services.

The study, led by the universities of Bristol and Cardiff, and published in Palliative Medicine, aimed to determine service providers’ perspectives on access to their support before and during the COVID-19 pandemic.

It is already known there are inequities in who receives formal bereavement support, with, among others, people from minoritized ethnic communities, sexual minority groups and people with lower socio-economic status known to experience barriers to access.

The COVID-19 pandemic had a disproportionate impact in the UK, with higher mortality and bereavement rates in minoritized ethnic minority communities and groups with lower socio-economic status.

The study included an online survey completed by 147 UK voluntary and community sector bereavement services and 24 qualitative interviews with staff and volunteers across 14 selected services.

The study found 67.3% of voluntary and community sector bereavement services in the UK reported that there were population groups with unmet support needs which experienced barriers to accessing their service before the pandemic, with minoritized ethnic groups most frequently reported to need support but not access it.

Despite the disproportionate and multi-dimensional impact of the pandemic on minoritized ethnic communities, for the majority of bereavement services in the UK, the proportion of clients from minority communities did not increase and in some cases decreased during the pandemic.

Positive interventions to increase equity included monitoring client demographics to identify gaps; improving outreach, language accessibility and staff representation; supporting other professionals in the community to provide bereavement support; and local collaboration and coproduction of services to ensure appropriateness and inclusivity.

Dr. Lucy Selman, Associate Professor from the Palliative and End of Life Care Research Group and the Centre for Academic Primary Care at the University of Bristol and corresponding author, said, “In the UK, voluntary and community sector bereavement services play a crucial role in providing bereavement support to people who have lost loved ones.”

“It is crucial that bereavement services take steps to make the support they provide appropriate for diverse population groups, advertise their services widely, and try to remove barriers to accessing their support so that all members of society can benefit.”

Dr. Emily Harrop, Research Fellow from the Marie Curie Research Centre at Cardiff University and co-lead on the research study, added, “it is also critical that further research is conducted involving bereaved people from diverse backgrounds, which can directly inform service-development, so that bereavement organizations can work to better meet the needs of under-served populations.”

More needs to be done to tackle inequity in access to bereavement support—and many service providers both recognize this and are ready to implement changes to widen access to their support, the study found.

The study recommends prioritizing equity—which means identifying, assessing and meeting unmet needs in bereaved communities, adapting services and outreach to ensure inclusivity, and working in partnership with communities and community-based organizations.

Karl Murray and Dr. Yansie Rolston, study co-authors from The Ubele Initiative, said, “the inability to be able to say farewell to a loved one within culturally sensitive and recognized circumstances goes beyond the burial; the before and after celebrations and reminiscence paves the way to being able to manage the stress and anxiety that the actual loss situation generates.”

“The work of many voluntary and community sector organizations in this space deserves some recognition for their sterling work which is reflected well in the research. Often, however, the mainstream organizations struggle to support people from Black, Asian and minority ethnic communities.”

“This is, in part, due to lack of understanding of how to approach those communities—a one size approach does not fit all—and in part due to lack of engagement with and understanding of those communities. For some it is a personal matter and, as one respondent to our support network puts it, ‘we do t’ings different!’ More support is needed to support local organizations best able to reach into these communities.”

Steven Wibberley, Chief Executive at Cruse Bereavement Support, said, “we at Cruse recognize the challenges identified in this new research. It is essential we do more across the bereavement sector to work with partner organizations and tackle the inequalities people face when accessing support—whilst also ensuring people can access culturally appropriate support.”

“We have already started this work through specialized training for our volunteers and staff, as well as working with a wider range of partners and furthering the production of translated materials. But we recognize this is just the first step and there is much more that can be done to ensure everyone can access the right bereavement support to meet their needs.”

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