Exploratory study from an end-of-life research partnership network to improve access for ethnically diverse communities in one region

Abstract

Background: Minority ethnic patients are less likely to access timely and effective palliative and end-of-life care and, as a consequence, more likely to experience poorer symptom management and receive more intensive treatments at the end of life. Research activity has the potential to address the aforementioned barriers to improve access. However, there is a need to develop capacity and capability, particularly within underserved communities, to provide an infrastructure that can drive research activity informed by the community to benefit the community. Objective: To build and develop a robust, inclusive, and representative research partnership to facilitate improved research activity committed to addressing inequity in access to palliative and end-of-life care among ethnically diverse communities. Design: An inclusive and representative KEEch research Partnership NETwork (KEEP-NET) was established, comprised of over 80 partner organisations that represent the local diverse and multi-faith communities. Interviews (n = 11) with service providers and face-to-face roundtable workshops with community stakeholders, service providers, informal carers, and faith leaders were conducted to understand needs, challenges, and research priorities. Setting: Bedfordshire, Hertfordshire, and Milton Keynes, UK. Results: Developing KEEP-NET required a flexible and agile approach to engage effectively with institutionalised and non-institutionalised stakeholders. Sharing a joint purpose of learning. managing partners' expectations and providing transparency and accountability within the network were all essential in building trust and equity within the research partnership. The overarching findings revealed a range of socio-cultural and structural barriers that negatively impact access and experience among minority ethnic groups. Discussions centred on the disconnect between informal care and support within the community, which many ethnic minority communities rely upon, and ‘institutional’ medical services. KEEP-NET uncovered that whilst service providers and communities acknowledge they need to engage with each other more, they remain uncertain of the best way to achieve this. There was also consensus that services need to deliver more effective, culturally competent, person-centric care that promotes compassion and gives weight to non-medical needs to better meet the needs of the diverse population. These findings and priorities have informed the submission of a co-produced research funding proposal. Beyond that, KEEP-NET has also provided a platform for further unplanned spin-off research projects and collaboration, including the implementation of an innovative ‘community connector’ role to facilitate better integration of community and voluntary services in palliative and end-of-life care.

Conclusions: KEEP-NET has provided valuable insight into factors that can facilitate the successful collaboration between multi-faith and diverse community stakeholders. Through KEEP-NET, we offer our observations as an opportunity for shared learning for others who want to adopt a similar approach when in the planning stages of establishing a research partnership network. The mutual benefit of developing this partnership and working collectively with communities to address inequalities in accessing PEoLC could provide a useful approach and way of solving other important priorities to reduce wider health inequalities.