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 was established, comprised over 80 partner organisations that represent the local diverse and multifaith 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, United Kingdom.
Results: Developing KEEch research Partnership NETwork 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 sociocultural 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. KEEch research Partnership NETwork uncovered that while 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, KEEch research Partnership NETwork 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: KEEch research Partnership NETwork has provided valuable insight into factors that can facilitate the successful collaboration between multifaith and diverse community stakeholders. Through KEEch research Partnership NETwork, 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 palliative and end-of-life care could provide a useful approach and way of solving other important priorities to reduce wider health inequalities.
Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research as award number NIHR135381.
Keywords: END OF LIFE; ETHNICITY; INEQUALITIES; PALLIATIVE CARE; RESEARCH NETWORK.
This study developed a research partnership which brought together key partners, including commissioners, healthcare providers, faith leaders, representatives of community organisations, academics and the wider public, including informal carers who represent the diverse and multifaith communities of Bedfordshire, Luton and Milton Keynes. Interviews (n = 11) with service providers and a series of face-to-face roundtable workshops with community stakeholders, service providers, informal carers and faith leaders were conducted to both enable all people’s voices to be heard and develop a shared understanding of the challenges that minority ethnic groups face in accessing palliative and end-of-life care. While medicalised services (e.g. hospices) are available, minority ethnic groups often depend upon informal carers, faith and community support, that is, ‘non-institutionalised’ routes that focus on providing love and care but have limited medical expertise. Stakeholders felt that there was a lack of integration between these routes, and while they both acknowledge they need to engage with each other more, they remain uncertain of the best way to achieve this. Families revealed they want more help and support to look after their loved ones. However, they want medical institutions to be more personable and compassionate, giving more weight to non-medical needs. This was particularly important to families from multifaith communities whose beliefs about death are far from Western medical practices. The study led to a new understanding of the importance of patient and public voice and how this can be facilitated among ethnically diverse communities. Through being flexible, agile and inclusive, we, through this partnership, were able to build trust and stimulate research activity that will have increased relevance and impact in addressing inequity. Healthcare providers and community stakeholders need to find new ways of working together to increase access to palliative and end-of-life care and better meet the needs of ethnically diverse patients and their families.