The findings from the three WSs of this study, described in Chapters 5 and 6, have identified key areas in which patients and their families require compassionate competence from health and social care professionals. The findings also highlight the need for the empowerment of service users from diverse ethnic and faith communities. Our dissemination work is informed by the recent work of Lamont196 and the ‘steps to impact’ that she describes. Although our dissemination work is, of course, far from complete, we report here on three key aspects of this as important outputs from this project:
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work with local communities to raise awareness to continue conversations about end of life and further develop collaboration to reduce inequalities and improve experiences
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supporting the practice of health and social care professionals through learning resources, including a nationally adopted NHS e-Learning for Healthcare module available to all health and social care staff
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a high-level national ‘think tank’ about education and training in PEOLC for HCPs.
Working with diverse ethnic and faith communities
Throughout the project, working collaboratively with the PCBR group and the PPI co-applicant (described in Chapter 3) and working with the LOROS Hospice community outreach team, we have continuously built engagement with the diverse ethnic communities of Leicester and Nottingham. Building trusting, collaborative relationships takes a great deal of time, especially with communities that are more recently established and have less developed engagement with systems and organisations. Successful community engagement requires collaboration with people of the community, taking an assets-based approach and that activities take place within the community: to go to where people are, alongside those they trust and respect.119,120
In the first 2 years of the project, we sought to build awareness about the work and to enable the broadest diversity of recruitment (described in Chapter 2, Recruitment). As discussed in Chapter 2, we contacted 177 community groups and community and faith leaders, and the research team was invited to 15 events. This engagement formed a good platform for our dissemination work in the last year of the project, when we sought to share the key messages and to increase collaborative working so that the project may lead to real change for people in their experiences in the last months of their life, when they are dying, and for their families and communities in bereavement.
One impactful aspect of our engagement and dissemination work has been through community radio based in Leicester, Ramadan FM (a pop-up radio station)197,198 and EAVA FM. Both have a social media presence promoting access beyond the live broadcast.
EAVA FM ‘take over’, July 2021
EAVA FM is a multilingual radio station broadcasting programmes to meet the needs of all, including new migrant communities. Its objective is to socially develop, inform and entertain, which comprises a combination of local news, enterprise, music, information, and cultural, faith and educational programmes, all supported by community members and local stakeholders.
Collaboration between the PPI co-investigator (IM) and the station manager led to a daily broadcast for 6 days in July 2021, discussing the research, and end-of-life experiences and services. The programme host focused on Somali, African Caribbean, Polish, Hindi-speaking, Gujarati-speaking and other Asian communities. The interviews can be viewed online.199
Community radio engagement enables layers of impact. First, there is the broadcast itself, which is listened to live or on-demand on the radio or via social media channels. Engagement with the live show through viewer comments online and through ‘call-ins’ were very few (two or three per show), but indicated a very meaningful impact on listeners in some of their comments. For example, people connected the need for more awareness of PEOLC issues with barriers and stigma within their communities that needed to change. Metrics, beyond ‘views’ and ‘likes’ on YouTube (YouTube, LLC, San Bruno, CA, USA), uploads and tweets, of the reach and impact are difficult to obtain, especially in such a sensitive topic considered as taboo by many. We know from the radio hosts that many conversations were stimulated and that people, although hesitant, wanted to explore the topic further, but we cannot measure these in number or impact.
Second, the hosts of the radio shows are trusted and respected members of their communities with a high profile, some with national awards for services to their communities. They are highly motivated to reduce hardship and inequalities in their communities. Their feedback to us after the week of EAVA FM broadcasts showed that, despite, for some, their own discomfort with the topic, they held a deep commitment to achieving change and a desire to engage and collaborate further on initiatives. One such collaboration on a proposal for community-based bereavement support has already been submitted for consideration.
Third, through the trusted radio show hosts, new networks can be built. Such new networks have been used as part of our dissemination and impact strategy by the CNLWs, whose activities and impact are detailed below. This endeavour goes beyond what was anticipated in the project plan and illustrates how impactful dissemination must be flexible enough to be pertinent to the target audiences.
The work with community radio is ongoing, with open invitations to return to share more activities and messages for the communities that the station serves, and we continue to build on these relationships.
Community Network Liaison Workers
In June 2021, when the possibility of more face-to-face activities opened up, we recruited three part-time CNLWs. We were fortunate to find three bilingual/multilingual people with the availability, experience and drive to reach out to the communities in Leicester and Nottingham, to go where they are, to discuss the findings of the study and to build collaborative relationships to take forward future work to achieve real change. We needed to develop their skills in this research role, their understanding of the findings, their confidence in discussing end of life and dying, and their knowledge about services that can be accessed, including myth-busting about hospice and palliative care services.
Between 23 July and 13 September 2021, the CNLWs facilitated discussions at 16 events with 106 people. The events were diverse and included selective and open groupings: groups at places of worship, women’s groups, a diabetes self-help group, a Bangladeshi community bus trip, picnics, a cultural festival and a young person’s group. The majority of people were from Asian communities, but there has also been contact with Jewish communities. Other communities were not able to be reached in this very short time frame.
The CNLWs used a number of resources to promote discussion and share information, including some of the evidence-based narratives described below.
The CNLWs focused discussions on:
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understanding of what a hospice is and the services they provide
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understanding of end of life and services that might be useful
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EOLCP and the use of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT)200
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discussing planning ahead about their own/their family member’s end of life.
When possible, Likert scales were completed at the beginning and end of each event assessing people’s views on these four areas.
Key findings so far
The events had a considerable impact on what people indicated about their understanding and likelihood of thinking ahead and planning about their own end of life, as shown in .
Mean score of participants at the beginning and end of a community event.
It was evident that most people had little knowledge of this area. The majority knew very little about what a hospice is or EOLCP, unless they had direct experience of a relative being terminally ill. Views about hospices were shared and misunderstandings and ‘myths’ (such as thinking hospices were a place where you will be left to die without any food or water) were discussed and corrected. Discussions about trust in health services and HCPs were especially layered in the context of COVID-19 and vaccines. It was also evident that there was an appetite for knowledge and sharing and that such discussions were welcome: ‘Yes, you need to go to communities to engage them on this topic so that it becomes less taboo’, ‘It has been quite therapeutic; we don’t talk about these things and today we have all shared our personal feelings’.
The key messages so far are that people:
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want to know more and also want an opportunity to visit a hospice
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wanted to know more about the ReSPECT.
Their suggestions as to what would be useful are as follows:
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more discussion groups in the communities in different languages
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most welcomed more discussion face to face
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to put leaflets in the doctors’ surgery, library
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talks on the radio and places of worship
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it should be taught in schools
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the information should be made available online and on social media for young people
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they wondered if there could be information accessible via an app.
Training for professionals
Fictionalised evidence-based narratives
There is evidence to suggest that sharing key messages through stories has a greater potential than other methodologies for changing attitudes and having an impact on behaviours. A story is distinct from a series of sentences in its activation of affective, cognitive and belief changes in the story receivers.201 Stories are often used with the public as interventions to influence health behaviours.202,203 Narrative-based medicine has been shown to enhance and sustain the development of empathic practice of clinicians.204
Research on the ability of narratives to transport their audience and thereby open them to new ideas and different ways of thinking and acting suggests that empathy with characters, identification with characters and vivid imagery change the usual way of thinking and acting of the person ‘hearing’ the narratives.
In addition to the summary narratives for each of the 18 case studies, for which three examples are presented in Appendix 2 (see Tables 14–16), we developed fictionalised narratives and stories based on the experiences of the 103 interview participants that convey the findings of this project in a number of outputs:
- 1.
third-person narratives
- 2.
first-person narratives (scripts)
- 3.
audio-recordings of first-person narratives in long (circa 5 minutes) and short (circa 2 minutes) formats.
These narratives have evolved and developed iteratively, informed extensively by PCBR group members’ comments, researcher field notes from WS3 following their use in online group workshops and offline workbooks, and from their use in conference talks and teaching.
We worked with a professional writer/storyteller and producer to develop the narratives and the output typologies, including the development of the reading performances and the recording and editing of the audio stories. The stories were performed by four professional actors and four volunteers.
The narratives have been designed to reflect a diversity of demographic characteristics and contexts and to focus on specific themes arising in the data; describes the characteristics of the eight stories that are used in the project dissemination and outputs. The audio-recordings and supporting materials, including a guide for educators, are available online (https://loros.co.uk/research-at-loros/thinking-ahead) and the scripts are included in Appendix 3.
Characteristics of fictionalised stories
Open-access e-learning
A key objective of this project is to produce resources to be used in training and self-directed learning by health and social care professionals. With NHS e-Learning for Healthcare, we have developed an e-learning module within the End-of-Life Care for All e-learning programme. The content of this module integrated findings from WSs 1 and 2 with the thematic analysis of the data from professional participants in WS3, informed by NPT and the use of BCTs. The module has also been shaped at various stages of development by feedback from professionals.
The module is available free to health and social care staff online (www.e-lfh.org.uk/programmes/end-of-life-care/).
National Palliative and End-of-life care Education Think Tank
All staff are prepared to care
Wherever I am, health and care staff bring empathy, skills and expertise and give me competent, confident and compassionate care.
Our impact plan for the project included the development of a new initiative to bring together high-level professionals across a diversity of stakeholder organisations that plan, commission, deliver and monitor training for HCPs and their competence in delivering patient care. We worked with the NHS England and Professor Bee Wee (NHS Improvement National Clinical Director for End-of-life Care), and Anita Hayes (the Hospice UK Head of Learning and Workforce), to host two events. The first event was face to face and was before the COVID-19 restrictions; the second, in November 2021, was virtual to meet COVID-19 restrictions. The organisations represented are shown in Box 2.
Organisations represented at the PEOLC Education Think Tank
The first event discussed what each organisation was doing to ensuring workforce competence to achieve the pertinent stated ambitions endorsed by NHS England (see and ) and competence in personalised PEOLC as described in the NHS Long Term Plan,205 which focuses especially on increasing the percentage of people who have been offered personalised care and support planning at the end of life.141
The six ambitions for PEOLC, National Palliative and End of Life Care Partnership.
The building blocks for ambitions: all staff are prepared to care.
The following themes were discussed:
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barriers to and enablers of preparing staff to care
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the NHS culture for staff learning about EOLC and using their skills effectively
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developing competence in honest conversations
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using technologies in learning and assessment
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implementation of standards and guidance in practice.
The group agreed that the meeting had been very useful, that there was a real need to improve education and training, and that there is value in doing this in a collaborative way.
A common focus was desired, and this was agreed as enhancing the workforce delivery of skilled honest and open conversations, including about deterioration and dying, to prepare staff to achieve ambition 1, each person is seen as an individual: everybody should have the opportunity for honest and well-informed conversations about dying, death and bereavement, and the NHS plans for personalised EOLC.
The importance of the competence of the health-care workforce in having open and honest conversations with patients and their families about deterioration and dying, and offering opportunities for personalised care planning, was dramatically foregrounded by the COVID-19 pandemic. The number of patients who were at risk of deterioration, the forced remote consultations and the diversity of staff who were caring for dying or very vulnerable patients meant that gaining skills and confidence in such conversations became a priority and greatly accelerated the development of resources and training.
The second event, delayed because of the impacts of the COVID-19 pandemic, was held in November 2021 and focused on supporting people from diverse ethnic and faith backgrounds.
