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Policy Research Programme - Ethnic minority communities’ experience of accessing bereavement support services research specification

Published

10 May 2022

Version

1.0 - May 2022

Contents

Timetable and Budget

Description

Deadline/Limit

Deadline for Stage 1 Applications

14 June 2022, 1 PM

Notification of outcome of Stage 1 Application

August 2022

Deadline for Stage 2 application

28 September 2022, 1 PM

Notification of outcome of Stage 2 Application

January 2023

Project Start

February 2023

Budget

£350,000 - £375,000

Introduction

1. The NIHR Policy Research Programme (PRP) invites applications for a single research project to explore ethnic minority communities’ access to bereavement support services.

2. The research will allow for the Department of Health and Social Care (DHSC), and the wider sector, to gain a better understanding of the challenges in place that prevent people from ethnic minority groups from accessing the bereavement support services they need, and therefore what changes need to be made or new interventions required to help address this. 

Background

3. More research is needed into the experiences of people from ethnic minority groups in accessing bereavement support services. Bereavement support services are mainly provided by the voluntary sector funded by grants and charitable donations. These services include support in the form of counselling, advice, helplines and webchats, and signposting services.

4. The COVID-19 pandemic highlighted a disproportionate impact of bereavement on minority ethnic groups. Mayland et al.’s ‘Bereavement care for ethnic minority communities: A systematic review of access to, models of, outcomes from, and satisfaction with, service provision’ identified that ethnic minority communities faced barriers to accessing support prior to the pandemic (2021). These barriers may include, but are not limited to factors including language barriers, a preconception of lack of cultural understanding by the support services, and a lack of awareness of the accessibility of these services.

5. During 2020/21, the DHSC provided a number of grants for some bereavement support organisations. During these funding periods, organisations that provided data on their users reported very low numbers of ethnic minority users. For example, one organisation funded reported that throughout a 3-month funding period, there were 13 African, 14 Indian, three Chinese and four Pakistani beneficiaries of the service, compared to 356 white British beneficiaries. The provision and accessibility of bereavement support for ethnic minority groups also remains a priority for external stakeholders within the sector.

6. Reducing health inequalities is part of the Government’s Levelling Up agenda. With the very limited data available showing a disparity in access for minority ethnic groups, it is important to bridge this gap by understanding why accessing bereavement support services appears to be lower among these groups and how this might be overcome.

7. This research could allow DHSC and the wider sector to:

  1. Gain a better understanding of the challenges that prevent people from ethnic minority groups from accessing the bereavement support services they want or need, and therefore, what changes need to be made or new interventions required to help address this.
  2. To allow the DHSC to better conduct conversations with organisations and stakeholders to ensure a better understanding of how to bridge the gap in the provision of support.
  3. Provide useful insights in producing Bereavement Standards of support to make the provision of support more uniform.

Research priorities

8. We anticipate that a qualitative approach will be appropriate for data collection to ensure that a wide range of in-depth experiences and reflections can be gathered to answer the research questions. Data collection and analysis should be appropriate to the intended objectives of the research.

9. We would like to answer the following research questions:

  1. How aware are different groups of available bereavement support services?
  2. How accessible are bereavement support services for ethnic minority groups?
  3. How do bereavement support services advertise their services?
  4. How might referral routes and/or the way services are advertised impact on the ability of ethnic minority groups to access support?
  5. What are the factors that prevent or facilitate access to bereavement support services?

10. The applicants should capture experiences from the following groups:

  1. People from ethnic minority groups who have accessed bereavement support services.
  2. People from ethnic minority groups who have recently lost a loved one and would have benefitted from, but did not access, bereavement support services.
  3. People from ethnic minority groups with different protected characteristics (e.g. religion, gender, socio-economic status) to understand how the intersectionality of individuals may impact their experiences.
  4. Bereavement support services and voluntary sector organisations who refer individuals to bereavement support services.

11. The Government definition of ‘ethnic minority groups’, available on Gov.uk’s Writing about ethnicity webpage, refers to all ethnic groups except the white British group. Ethnic minorities include white minorities, such as Gypsy, Roma and Irish Traveller groups. The research should set out how they would ensure ‘representativeness’ of ethnic minority groups. Applicants should also set out how they will include and represent individuals with different protected characteristics, for example, from different socioeconomic groups, genders, religions and ages.

12. Given the nature of the research area, applicants should clearly set out how they will deal with the ethical issues of this research, setting out how participants may be supported in discussing sensitive and personal experiences.

13. We know from research, such as Wilkinson et al’s. paper Exploring access to end of life care for ethnic minorities with end stage kidney disease through recruitment in action research, that ethnic minority groups often experience language barriers. Therefore, applicants should consider the use of interpreters to access voices often unheard within this population.

14. The primary audience for the outcome of this research will include policymakers from DHSC and associated arms-length bodies, but it will also be of interest to stakeholders in the third sector who commission and manage bereavement support services. The successful applicant will be expected to provide feedback on interim findings to help shape the development of policy or ongoing work.

Outputs

15. Applicants are asked to consider the timing and nature of deliverables in their proposals. Policymakers will need research evidence to meet key policy decisions and timescales, so resource needs to be flexible to meet these needs. A meeting to discuss policy needs and reporting timelines with DHSC officials will be convened as a matter of priority following contracting.

16. Outputs should include:

  1. an interim report and written updates.
  2. draft publishable report and a final publishable report, with an executive and lay summary
  3. a presentation of findings to DHSC colleagues and other key stakeholders

17. The final report, fully accessible to policymakers and members of the public, will be peer reviewed and circulated in DHSC and arms-length bodies involved in the project.

18. Applicants should consider the full range of potential audiences and describe how the research findings could be disseminated most effectively to ensure that the lessons from this research effect policy and practice.

Budget and duration

19 The budget for this project is anticipated to be between £350,000 - £375,000.

20. Costings can include up to 100% full economic costing (FEC) but should exclude output VAT. Applicants are advised that value for money is one of the key criteria that peer reviewers and commissioning panel members will assess applications against.

21. Applicants are asked to consider the timing and nature of deliverables in their proposals. The policy team believe that there are particular benefits to starting this research whilst COVID-19 is still prevalent, given the disproportionate impact of the pandemic on ethnic minority communities.

22. At this stage we would expect the research to take around 18-24 months to provide detailed and useful insights for policy development and conversations with organisations and stakeholders.

Management arrangements

23. The successful applicants will be expected to work closely with DHSC and an inception meeting with DHSC and other governmental and arms-length officials will be convened following contracting.

24. A research advisory group including, but not limited to, representatives of DHSC, Cruse, National Bereavement Alliance, Independent Age and the successful applicants for the research should be established. The advisory group will provide guidance, meeting regularly over the lifetime of the research. The successful applicants should be prepared to review research objectives with the advisory group, and to share emerging findings on an ongoing basis. They will be expected to:

  • Provide regular feedback on progress
  • Produce timely reports to the advisory group
  • Produce a final report for sign off

25. Research contractors will be expected to work with nominated officials in DHSC, its partners and the NIHR Policy Research Programme. Key documents including, for example, research protocols, research instruments, reports and publications must be provided to DHSC in draft form allowing sufficient time for review.