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 minoritised 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 minoritised ethnic minority communities and groups with lower socio-economic status.
The UKRI/ESRC-funded 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 minoritised ethnic groups most frequently reported to need support but not access it.
Despite the disproportionate and multi-dimensional impact of the pandemic on minoritised 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 organisations 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 recognise this and are ready to implement changes to widen access to their support, the study found.
The study recommends prioritising 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 organisations.
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 recognised 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 organisations in this space deserves some recognition for their sterling work which is reflected well in the research. Often, however, the mainstream organisations 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 organisations best able to reach into these communities."
Steven Wibberley, Chief Executive at Cruse Bereavement Support, said: "We at Cruse recognise the challenges identified in this new research. It is essential we do more across the bereavement sector to work with partner organisations 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 specialised 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 recognise 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."
The research team hope their findings can help inform efforts to widen access and reduce inequities.
Earlier this month, the independent UK Commission on Bereavement (UKCB) chaired by The Right Reverend and Right Honourable Dame Sarah Mullally DBE, the Bishop of London, published its findings from one of the largest ever consultations on bereavement support in the UK.
The report Bereavement is everyone’s business, found there were around 750,000 excess bereavements during the pandemic in the UK compared to the previous five years together and identified huge gaps in support for bereaved people, with over 40% of adult respondents who wanted formal bereavement support reporting they did not get any. The UKCB report also identified a particular need to focus on better supporting Black, Asian and minority ethnic communities, and others who are currently poorly served.
Paper
'"Sadly I think we are sort of still quite white, middle-class really" – Inequities in access to bereavement support: Findings from a mixed methods study' by Lucy E Selman, Emily Harrop et al. in Palliative Medicine [open access]