Title: KEech End of life research Partnership NETwork (KEEPNET): A partnership network to enhance research capacity and capability to improve access of palliative and end-of-life care among the ethnic minority population across Hertfordshire, Bedfordshire, and Milton Keynes
Funder: Department of Health and Social Care

Abstract: Whilst patients who receive care from specialist palliative care teams tend to have a better death evidence suggests that minority ethnic groups are less likely than their white British counterparts to use these services. Barriers, which include lack of information about services available, religious, and family issues, communication, and structural barriers have all been shown to contribute to the limited uptake of end-of-life care services among the UK’s ethnic minority population. To effectively care plan for patients, we need to improve access to services for ethnically diverse patients by understanding the barriers to their uptake of services and developing suitable training for professionals to overcome these issues._x000D_ _x000D_ Bedfordshire, Hertfordshire, and Milton Keynes all of which host significant ethnically diverse communities with pockets of high deprivation when compared to the UK average. Keech Hospice Care, located on the Bedfordshire/Luton border which provides hospice care to all these areas identified clear local challenges when a tour to the hospice was declined by an ethnically diverse local women’s group. A local advocate explained that the women were fearful of the taboo subject of death and had questions about what to expect before they would agree to attend. _x000D_ _x000D_ This research partnership aims to support the building of research infrastructure in the local community to inform future research activity and funding which will seek to improve access and uptake of palliative and end-of-life care among the local diverse populations who reside in Bedfordshire, Hertfordshire, and Milton Keynes. _x000D_ _x000D_ This will be achieved through the following work packages:_x000D_ (1) Mapping review of services across Bedfordshire, Hertfordshire, and Milton Keynes_x000D_ We will map all the current services that provide palliative and end of life care and support across Bedfordshire, Hertfordshire, and Milton Keynes to build a repository that will inform who we invite to our Research Partnership Network._x000D_ _x000D_ (2) Development of a Research Partnership Network_x000D_ We will set up a research partnership network which will be comprised of key partners, professional groups and lay community members across Bedfordshire, Hertfordshire, and Milton Keynes. We will conduct semi-structured interviews with network members to identify training needs and barriers to research collaborations. We will deliver based on this a range of knowledge exchange activities in a bid to upskill our research partners. _x000D_ _x000D_ (3) Development of a Public Engagement Group_x000D_ We also seek to develop a public engagement group, who will represent the diverse communities within Bedfordshire, Hertfordshire, and Milton Keynes. We will train, mentor, and support our public engagement group and collectively co-develop a NIHR funding research proposal (which we will submit in 2022) through the facilitation of mini’ roundtable workshops. _x000D_ _x000D_ The findings and the development of the public engagement group will support the design of culturally appropriate research priorities, tools, and resources which in turn, we hope will increase access to services available and subsequently improve patient and caregiver experience. All findings will be disseminated widely through 1) presentations at meetings 2) conferences and publications and 3) digital communication and social media (e.g., blogs, Twitter, Facebook groups) targeted to our Partnership network and stakeholders alongside the wider public.

Lay abstract: RESEARCH QUESTION_x000D_ How can we improve access and uptake to palliative and end-of-life (EoL) care services to reduce inequalities among ethnic minority populations who reside in Bedfordshire, Hertfordshire, and Milton Keynes?_x000D_ _x000D_ BACKGROUND_x000D_ The Better Endings report ‘Right care, Right place, Right Time’, states that patients who receive care from specialist palliative care teams tend to have a better death than those without access to this care. Despite this, evidence continues to suggest that ethnic minority groups are less likely than their white British counterparts to access and use end-of-life care services, and when they do, there is evidence of unmet needs. Barriers, which include lack of information about services, religious and family issues, communication and structural barriers have all been shown to contribute to the limited uptake of EoL care services among the UK’s ethnic minority population. _x000D_ _x000D_ AIMS AND OBJECTIVES_x000D_ This project is Phase 1 of a research partnership programme that aims to support the building of research capacity and capability which will inform Phase 2 of a fully costed co-produced NIHR research bid application (due to be submitted in 2022). This will be achieved through the following three objectives:_x000D_ _x000D_ (1) Conduct a mapping review of all palliative and End of Life (EoL) care services across Bedfordshire, Hertfordshire, and Milton Keynes (BHMK) (Work Package 1)_x000D_ (2) To establish a palliative and EoL care Research Partnership Network (RPN) to represent the diverse multi-ethnic and multi-faith communities across BHMK._x000D_ (Work package 2)_x000D_ (3) To develop, train, and mentor a Public Engagement Group (PEG) Group to represent the diverse multi-ethnic and multi-faith communities across BHMK (Work Package 3)._x000D_ _x000D_ METHODS_x000D_ Work package 1: We will map all the current services that provide palliative and EoL care and support across BHMK to build a repository that will inform who we invite to our RPN. These localities all host significant ethnic minority communities with pockets of high deprivation. Research activity has also been historically low within the BHMK area._x000D_ _x000D_ Work package 2: We will set up a RPN and conduct semi-structured interviews with network members to identify training needs and barriers to research collaborations. We will deliver based on this a range of knowledge exchange activities in a bid to upskill our research partners, building consensus on research priorities._x000D_ _x000D_ Work package 3: We will develop a PEG, comprised of lay community members who will represent the diverse communities who reside across Bedfordshire, Hertfordshire, and Milton Keynes. We will train, mentor and support our PEG group to co-develop an NIHR funding research proposal (which we plan to submit in 2022) through the facilitation of mini’ roundtable workshops. _x000D_ _x000D_ ANTICIPATED IMPACT AND DISSEMINATION_x000D_ This research partnership will inform recommendations and best practice guidelines in terms of inclusive and culturally competent research practice. It will also address a significant gap in research infrastructure by ensuring robust inclusive and representative public engagement and ensuring all relevant stakeholders from palliative and EoL are involved all of which will benefit Phase 2. Key learnings, findings, and implications will be disseminated widely through the partnership network, digital communication and social media, and public engagement events.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE