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

Mapping of palliative and end-of-life care services and organisations

Previous local mapping exercises of PEoLC, such as the one conducted by Luton Palliative Care Network,31 have only achieved partial success. This has been due to the fragmentation of services across different geographical boundaries and the multiple agencies involved. Therefore, rather than defining services by commissioning groups, a patient-centric approach was created to reflect the range of services available to people in the last year of life. This represents a novel approach that aimed to provide a structure for a comprehensive review of all PEoLC services across BHMK, which had not been attempted before. A service list was created from those services already included within the Luton Palliative Care Network31 and also informed by the NICE guidelines32 and the Gold Standards Framework Proactive Identification Guide. 33 This process identified around 36 services organised into five categories: medical treatment and advice, personal and domiciliary care, psychological and counselling services, alternative therapies, and practical services.

An online survey was created on a Qualtrics (Qualtrics, Provo, UT, USA) survey platform, which asked for details on the type of organisation, the services provided, geographical areas served in BHMK, the main source of referrals, and identified perceptions around the level of service use by people from ethnic communities alongside faith and translation services offered. This survey was shared with the initial 36 services identified alongside the research team’s existing known networks, stakeholders and relevant mailing lists. In parallel, web searching was used to identify potential service providers and organisations. Personal contacts were made with these organisations to introduce the project and encourage them to participate in the mapping survey. We also sent regular chaser e-mails and reminders to encourage participation. Snowballing techniques were also used whereby known contacts alongside those who took part were asked to disseminate the survey to other relevant services/organisations who were omitted and provide PEoLC to the local communities across BHMK. The survey was also widely disseminated online through social media, for example Twitter (Twitter, Inc., San Francisco, CA, USA), WhatsApp and Facebook (Facebook, Inc., Menlo Park, CA, USA). The survey remained live throughout the project (February 2022–December 2022).

A total of 21 additional service providers responded to the survey, primarily including medical PEoLC service providers, such as hospices, hospitals and community nurses (N = 57). There were, however, challenges in getting responses from non-medical service providers, which reinforced findings of previous attempts at mapping services that identified PEoLC provision as complicated and fragmented, with only hospice providing a central co-ordination point for people in the last year of life. While non-institutionalised service providers, such as community groups, are essential for understanding and improving PEoLC experiences of diverse populations, many organisations that provided support in these non-medical areas did not perceive themselves as a PEoLC service provider. Therefore, we proactively approached potential services and organisations across the non-medical categories to introduce the project and supported them in completing the survey. We would then ask them to introduce us to other relevant services and organisations. These conversations were an essential step in creating the network’s visibility.

An additional aim of the mapping exercise was to build a searchable open-access online database of PEoLC services across BHMK that enables the public and professionals to search for specific services in their area. The website uses an algorithm that enables an individual to search for services based on their locality, whether the service relates to an adult or child and what type of support they are looking for with options including (1) faith and spiritual, (2) medical advice and treatment, (3) personal care and home help, (4) practical assistance, psychology and counselling, and finally and (5) well-being and alternative therapies. All available providers are shown to the individual with links that direct them to their contact information [including website, address and telephone number, details on how to access their service(s), that is whether they need a professional referral or not and whether the service is free or paid]. There are future plans to continue to develop this website to build in translated versions and provide information on translation services available by the service providers. An annual survey will be sent to all services held on the repository to ensure that all information about their service is accurate and, where relevant, provide any changes to provision. In addition, services will be asked to identify if they know any new services that should be included within the repository.

Research partnership network recruitment

A ‘whole system’ and inclusive approach34 was used to recruit key partners, professional groups and stakeholders across health and social care from a diverse range of third-sector organisations, including charities, voluntary and formal and informal community organisations and networks that deliver PEoLC across the region. To facilitate this, a mapping exercise was conducted to identify providers and stakeholders of PEoLC across BHMK who would be invited to join the RPN. To ensure that we developed an inclusive RPN representing the ethnically diverse communities across BHMK, we adopted a flexible and pragmatic approach to aid recruitment, using direct contacts and networks, snowballing alongside a solid social media presence.

Network operational model

The launch of KEEP-NET was initiated through a face-to-face event at the University of Bedfordshire on 31 March 2022. All services and organisations identified through the mapping survey were invited. Adverts were also created and shared via existing networks, with known services and attendees invited to share to their wider networks. The event gained substantial interest and was attended by 32 members who represented a range of health, social care and community stakeholders across the BHMK region. Hospices, community and hospital health and social care providers attended alongside representation from Grassroots community organisations and informal networks across BHMK, including Equality in Diversity CIC, local mosque funeral services and local community health forms, including Healthwatch representatives. Academics and community members also attended the event with an active interest and/or lived experience of PEoLC.

The launch of the network was a symbolic and important starting point for the RPN to develop ground rules in which the RPN would operate alongside an agreed shared vision to set out the common values underpinning the network. Working towards shared values and goals was an important step in developing a network that facilitates more effective working relationships through increased trust, transparency and respect. 35–37 The agreed ground rules are presented in Table 1, which centred around six guiding principles: (1) a shared vision, (2) all voices are equal, (3) inclusivity, (4) acceptance that issues exist, (5) accountability and (6) building mutual trust.

Semistructured interviews with service providers

A qualitative study using semistructured interviews was conducted with service providers/professionals to explore their experiences working with ethnic minority communities, including experience and perception of inequalities. Health professionals/service providers who work across health and social care from a wide range of PEoLC services, including charities and voluntary and community organisations across BHMK, were purposively recruited to participate in this study.

Information and promotional materials about the study were e-mailed to all existing contacts identified through the service mapping alongside contacts made through the RPN. RPN members were also asked to share the recruitment materials through their networks and with known contacts/services who they felt may be eligible. A total of 11 health professionals/service providers agreed to take part in an interview, who represented hospital (n = 3), community (n = 3) and third-sector organisations (n = 5) across the four geographical regions in BHMK, including Luton (n = 3), Milton Keynes (n = 4), Central Bedfordshire (n = 2) and Hertfordshire (n = 2).

An interview topic guide was developed collaboratively as part of the multidisciplinary research team, informed by the literature and discussions from the KEEP-NET launch event. The topic guide used open-ended questions to explore key priorities for research and experiences of providing PEoLC care to ethnic minority communities, including experience and perception of inequalities, the role of communication and translation, the role of planning for death, approaches to faith and resource planning (see Report Supplementary Material 1). Probes were also used to generate further explanations where relevant.

Before participation, all participants were provided with a participant information sheet which clearly explained the nature and purpose of this research, with written informed consent obtained through the completion of a consent form. A trained and experienced research assistant with a postgraduate qualification in Health Psychology facilitated all interviews. All interviews were conducted online using video conference software (Microsoft Teams) and lasted approximately 60 minutes each (46–83 minutes). The interviews were video-/audio-recorded with permission and were stored securely on a secure password-protected laptop. All participants were provided an opportunity to verify their transcript, and once this process was complete, the video files were destroyed. Participants were provided pseudonyms to maintain confidentiality, with all names of organisations removed to ensure any direct quotes could not be linked back to the individual. Ethical approval was obtained from the Institute of Health Research at the University of Bedfordshire (REF: IHREC979).

The interviews were analysed using the Framework Method,40 which provides a highly structured and systematic approach to generating themes and through the development of a ‘matrix’, which can identify commonalities and differences within the data. 41 An inductive approach was used to guide the analysis, whereby transcripts were read several times to identify emerging themes. A working analytical framework, comprised of the research team and lay members, was presented to the steering group for comment. The agreed analytic framework was then applied to all transcripts using specialist software [NVivo v12 (QSR International, Warrington, UK)]. The coded data were then synthesised and summarised into a Framework Matrix with case nodes representing the different settings where PEoLC services are delivered (hospitals, hospices and NHS community) [including general practitioners (GPs) and community nurses] and coded nodes representing the themes.

The findings uncovered three main themes, which included (1) access to services, (2) uptake of services and (3) experiences of engaging with services. The high-level findings are presented in Appendix 1, Table 2, which details the extent to which people from ethnic minorities are affected by the barriers and facilitators identified, that is (1) everyone is affected in the same way; (2) everyone is affected, but people from ethnic minorities are affected more; and (3) only affects people from ethnic minorities (see Appendix 1, Table 2).

There was a clear need to co-ordinate research, with all interviewees stating that they were very supportive of the objectives of KEEP-NET and recognised that addressing inequity based on ethnicity was a high priority. However, some interviewees were also keen to understand not only inequity relating to other underserved groups who were also identified as not always receiving the services they need, including those who are homeless, LGBTQ+ (lesbian, gay, bisexual, transgender, queer/questioning or any other sexual identity that exists outside of heterosexuality), people in the criminal justice system and those with learning difficulties. Nonetheless, it was recognised that this was a valuable and innovative approach that could put PEoLC on the agenda, which could develop trusting relationships in the local communities and further extend to address inequity among other underserved populations.

The findings uncovered a wide range of barriers and facilitators that were perceived to impact the access and uptake of PEoLC among ethnic minority groups. It was felt that barriers relating to communication, particularly terminology and lack of translation, impacted the access to many services. It was felt that patients’ needs were not being identified early enough, whereby more effective strategies are needed to identify those in the last year of life, with clearer referral pathways to ensure patients are referred to services earlier and can receive more timely support. While it was acknowledged that a more diverse workforce in PEoLC would make services more culturally inclusive, all services echoed the challenge of being unable to attract and retain staff from ethnic minority communities.

A range of cultural barriers were perceived to impact the uptake of PEoLC among ethnically diverse communities. There was a consensus across all services that attitudes to death and dying among minority ethnic groups differ from the mainstream and are not widely understood. It was also felt that service providers lack knowledge and confidence on how to talk about death and dying with minority groups from non-Western cultures. It was also felt that negative perceptions towards hospices impact uptake, where assumptions and biases exist for those who use hospice services. It was further felt that hospices/hospice staff were not always viewed as medically competent as hospital staff by professionals and/or the public.

In relation to patient experience, ethical and legal challenges were noted, particularly among participants representing community and hospice settings, where they felt that patients’ cultural and faith needs could often conflict with medical procedures and legal requirements. There was also a perception that PEoLC lacked compassion and focused on medical procedures rather than care. Language barriers also impact patient experience, where professionals/service providers feel that information is not often translated or translated effectively. It was also felt that while medical information was widely shared, non-medical information was either not shared or not shared enough.

Engagement with community stakeholders, informal carers and faith leaders

A guiding principle of community-based participatory research (CBPR) is that it is necessary to partner with the communities that will ultimately benefit from the research42 with co-production and the engagement of communities and individuals critical when designing person-centred care, especially for marginalised minorities. 43 To achieve this, we facilitated three roundtable workshops, one with (1) community and service provider stakeholders, which formed part of our launch event and additional separate workshops with (2) faith leaders and (3) informal carers. All events were centred on two main topics. Firstly, to identify the needs, challenges and priorities at the end of life and, secondly, to consider what ideal support looks like and recommendations. After each event, a report capturing the major themes, experiences and suggestions was shared and sent to all attendees to verify and make any suggested changes/additions. Attendees were invited to comment on the report and encouraged to add anything else they would like to add. The reports were updated as and if necessary and then widely disseminated to the RPN.

Workshop 1: community/provider stakeholders

As part of the launch event, we asked the community stakeholders and service providers who attended to identify the most pressing issues and concerns and identify the big questions that need answering. An overview of the key themes is illustrated in Figure 2, with more detailed findings in Appendix 2. The discussions centred on the cultural appropriateness of institutional settings in providing PEoLC and how relevant these services are in meeting the cultural and faith needs of ethnically diverse communities that live in BHMK. There was a concern that training healthcare providers to become more culturally aware, while helpful, might not be the answer. Rather, there is a need to better understand existing end-of-life care provided by informal carers and faith communities to understand what additional support is needed.

FIGURE 2.

Frequency of words used in discussions with community stakeholders and service providers.

Data analysis and prioritisation

The triangulated findings from the interviews and stakeholder discussion groups revealed that barriers vary across settings, and while some issues affect everyone equally, there are significant barriers that negatively impact ethnic minorities more than their White British counterparts. There was also consensus around some of the most pressing issues and potential solutions across the stakeholder workshops, with the core themes presented below.

Research activity and partnership

KEEch research Partnership NETwork has addressed a significant gap in research infrastructure through the development of a robust, inclusive and representative RPN, which has brought together over 80 partner organisations, including commissioners, service managers, providers and clinicians who work across primary care, palliative care services and community, hospice, and hospital settings, academics alongside community stakeholders, including faith leaders, community networks, third-sector organisations, carers and community members and academics that represent the diverse and multifaith communities of BHMK.

A key aim of the funding was to support the development and growth of partnerships and collaborations, which could facilitate the submission of a high-quality proposal which could be submitted to a forthcoming NIHR research commissioned call on PEoLC. Research priorities were identified through the triangulation of the experiences of the major stakeholder groups, including service providers, community groups, faith leaders and informal carers, as outlined in work package 2. These priorities were then used to co-develop a research funding proposal with formed work packages based on an agreed topic by the RPN to address inequality in access and uptake of PEoLC for ethnically diverse communities.

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. A funding application will, therefore, seek to adopt a proactive approach to create a more holistic understanding of the pathways and integration between ‘institutionalised’ and ‘non-institutionalised’ PEoLC. This research, if funded, will seek to adopt a system-wide approach and provide the evidence base for a multifaceted intervention comprised of co-designed tools and resources aimed at health professionals, health providers and community stakeholders to increase engagement and interactivity that seeks to address existing inequalities. Through improved interactions between ‘non-institutional’ and ‘institutionalised’ settings, this research seeks to make an impact through increased referrals, access and engagement of PEoLC among minority ethnic groups, provide PEoLC that meets the needs of diverse minority groups and provide increased awareness of barriers to access to PEoLC among minority ethnic groups across stakeholders at a national and international level.

As KEEP-NET has begun to grow and partnership relationships have matured, it has provided a platform for further unplanned spin-off research projects and collaboration. 52 For example, the research team were awarded funding to conduct a pilot and process evaluation funded by the Bedfordshire, Luton and Milton Keynes (BLMK) Integrated Care System to evaluate if a ‘Community Connector’ intervention programme is feasible, acceptable to beneficiaries and implementers, and appropriate for the local cultural context within the cancer and end-of-life care pathway for minority ethnic communities. KEEP-NET has also been invited to collaborate on several research projects that focused on engaging diverse populations in PEoLC and has become a study site for a recently funded NIHR bereavement study that seeks to explore improving bereavement services for ethnic minority communities. These sustained efforts will be crucial in developing long-term working relationships through the RPN.

Impact and outputs

While the key aim of KEEP-NET was to drive research activity, there were additional notable outcomes from this project that have the potential to impact the local communities significantly. Through an extensive mapping exercise, we developed a searchable PEoLC service repository for BHMK, which has provided a useful front-facing tool for the local community to understand what services exist, what support they provide and how they can be accessed. There are plans for how this can be further maintained and developed. The service repository was demonstrated as part of the KEEP-NET dissemination event, with details on how it can be used, accessed and shared. This resource will also be widely shared with key stakeholders identified in KEEP-NET, including service providers, community and faith leaders and informal carers, to ensure that it can be made available and accessible to the communities that will benefit from it.

In addition, an unanticipated activity which resulted since the launch of KEEP-NET was the implementation of a new ‘Community Connector’ role, crowdfunded by the community, to engage with Luton’s Muslim communities as a conduit between institutional PEoLC and the community to build networks and increase capacity in PEoLC. Community connectors have become an important community asset and are integral to the CORE20PLUS553 strategic approach to addressing inequalities in underserved populations across England. This innovative role has the potential to facilitate better integration of community and voluntary services in PEoLC, which may enhance the community’s stage of readiness to address disparities in access to PEoLC. 54 Further research is needed to evaluate the implementation of this role to understand if and how this initiative can address disparities in access to PEoLC and how it may enhance other community-facing peer-led roles, which will provide useful evidence for local and national commissioners and policy-makers.

Dissemination

Dissemination and engagement have been integral in maintaining KEEP-NET. Soon after the project started, a local and national press release featured the launch event on numerous TV channels. An interactive web page, hosted on the University of Bedfordshire server, was developed, which provides information about the network, shared network vision and common values underpinning the group, blogs about named members, events and meetings, research activity, outputs and dissemination. We have also provided regular updates, including details of outputs, progress and events, shared via social media networks, including X (formerly Twitter) and mail distribution lists.

At the end of 2022, we also hosted a dissemination event, which presented the key findings and progress from the RPN alongside future steps and recommendations. It was held at the University of Bedfordshire on 1 December 2022. This event included sessions on the new Keech Community Connector role, the service repository tool, the themes and questions generated from the launch, faith leader and informal carer events, and the progress and achievements made in relation to research activity. Feedback was also sought and captured on the tangible initiatives of KEEP-NET and research priorities, which were then fed into the NIHR research funding proposal. This event was well attended (N = 24), including representatives from hospices, hospital trusts and community nursing (n = 11); representatives from community groups (n = 6); informal carers (n = 3); and academics (n = 4).