Article Text
Abstract
Background Public awareness work regarding palliative and end-of-life care is increasingly promoted within national strategies for palliative care. Different approaches to undertaking this work are being used, often based upon broader educational principles, but little is known about how to undertake such initiatives in a way that equally engages both the health and social care sector and the local communities. An asset-based community engagement approach has been developed that facilitates community-led awareness initiatives concerning end-of-life conversations and care by identifying and connecting existing skills and expertise.
Aims (1) To describe the processes and features of an asset-based community engagement approach that facilitates community-led awareness initiatives with a focus on end-of-life conversations and care; and (2) to identify key community-identified priorities for sustainable community engagement processes.
Methods An asset-based model of community engagement specific to end-of-life issues using a four-step process is described (getting started, coming together, action planning and implementation). The use of this approach, in two regional community engagement programmes, based across rural and urban communities in the northwest of England, is described.
Findings The assets identified in the facilitated community engagement process encompassed people's talents and skills, community groups and networks, government and non-government agencies, physical and economic assets and community values and stories. Five priority areas were addressed to ensure active community engagement work: information, outreach, education, leadership and sustainability.
Conclusions A facilitated, asset-based approach of community engagement for end-of-life conversations and care can catalyse community-led awareness initiatives. This occurs through the involvement of community and local health and social care organisations as co-creators of this change across multiple sectors in a sustainable way. This approach provides a framework for other communities seeking to engage with public awareness in end-of-life issues.
- palliative care
- community development
- public health & end of life care
- social change
- advance care planning
- Supportive care
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- palliative care
- community development
- public health & end of life care
- social change
- advance care planning
- Supportive care
Background
Public awareness work regarding dying, death education, palliative and end-of-life care is an identified priority in strategies and policies worldwide. While there is recognition that this is an important area of action to improve the end-of-life experiences for people and their families by policymakers and palliative care services,1 public attitudes about these issues are complex.2 For example, in England, the End of Life Care Strategy3 identified a need to raise the profile of end-of-life care and to change attitudes to death and dying in society. This has led to a national coalition ‘Dying Matters’ being established in 2009 under the auspices of the National Council for Palliative Care and to the promotion of an annual Dying Matter's week and the development of extensive information material and community education initiatives. The establishment of coalitions, campaigns and targeted weeks of activity, like these, is seen worldwide (table 1), with increased interest in a number of countries since the mid-2000s.
These initiatives have arisen from the palliative care world, and there is often a clear focus on the promotion of advance care planning within a health system context (Canada, USA, Ireland). Health and social care professionals have usually led these initiatives, rather than members of the public themselves. These initiatives raise the profile of public awareness work among policymakers and health and social care professionals with a focus on specific health-related activities. However, there are limitations in terms of the impact national campaigns can have upon the local communities where people live.4
The emergent field of public health approaches to palliative care5–7 offers a way to reframe these activities beyond the healthcare context. A public health approach moves control and power with respect to end-of-life issues away from professionals, arguing that communities can be more proactive in engaging with the broader implications of dying, death and bereavement for those in their midst than institutions.8 The rationale for undertaking the following projects was to deliver an approach not previously applied to palliative care, specifically to identify how professionals and local communities could work together to launch integrated, sustainable approaches to end-of-life conversations and care.
Aims
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To describe the processes and features of an asset-based community engagement approach that facilitates community-led awareness initiatives with a focus on end-of-life conversations and care.
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To identify key community-identified priorities for sustainable community engagement initiatives.
Asset-based model of community development
The asset-based community development approach (ABCD) has been used internationally in sustainable community development efforts around social issues (ie, poverty, youth development, education).9 This model proposes that the way to produce strong community-based projects is to identify and bring together existing community values, resources and expertise: ‘assets’.9 The approach aligns with the values of public health approaches to palliative care, offering an integration of the professional, system and community contexts.
Three principles underpin the ABCD approach: it is asset-based, internally driven and relationship focused.7 This is in contrast to many traditional models for change that are based on identifying and ‘fixing’ deficits from the top down. Drawing upon these principles, a model to facilitate the launch of community engagement initiatives focused on end-of-life conversations and care has been developed. The process of facilitated community engagement follows the following four steps: getting started, coming together, action planning and implementation (figure 1).
Methods
A lead organisation (step 1) acts as the host convener facilitating the processes of planning, funding and subcontracting as appropriate for each project. The lead organisation identifies willing community ‘hosts’ who arrange a facilitated local community-based event using a trained facilitator (step 2). The facilitated event(s) convene representatives from interested community organisations who engage with different populations related to dying, death and bereavement across the community. The aim of the event is to engage these organisations around a common issue and to collectively map the individual, group and community assets. This then provides a framework for the identification of priority areas where connections, developments and change can occur. On the basis of the event, a community asset report with recommendations by and for all participant groups and organisations is produced.
Participants re-convene to review the report, prioritise and commit to an initial community plan for action (step 3). Included in the plan is a vision for the work alongside specific actions in priority areas of activity. The plan is then implemented (step 4) within the community as each organisation undertakes actions specific to the aims and foci of the collaborative awareness initiative, while addressing plans for sustainability. Throughout the process, the community organisations continue their particular work as they engage with their own clients, patients, families, staff, team and constituencies, yet now as part of a larger community project/plan around end-of-life conversations and care.
Case studies
The following case studies are illustrative of the processes and elements of an applied asset-based approach used in two regions: (1) a Cumbria county-wide public health public awareness campaign pilot and (2) the engagement of six communities across Merseyside and Cheshire championed by staff from the health and voluntary sector.
Case study 1: Cumbria Conversations for Life
The first case study outlines the development of an innovative public health initiative initiated in response to local health, social care and voluntary agency interest. Cumbria Conversations for Life was a county-wide pilot initiative co-branded and funded by NHS Cumbria (lead organisation) under a Healthy Communities public health initiative. The project had the following aim: to improve awareness about, and increase, advance care conversations among the general population using a public health campaign.
The objectives were to
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▸ break the taboo of talking about death and dying while healthy
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▸ help the public consider options and improve access to local resources
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▸ support people to learn how to begin conversations to influence their care for the future.
‘Advance care conversations’ refers to a public health approach to conversations between family members preparing for future care needs rather than the completion of specific advance care planning paperwork associated with health bodies.
Given interest from multiple local leaders, and under the auspices of the lead organisation (step 1), the project was led by an independent project lead (MM) and overseen by a multiagency project steering group (local leads) that informed and guided the work. Membership of the steering group represented local hospice and specialist palliative care organisations, primary care, public health, social care and aging. Ethical approval was obtained from the Cumbria County Council Research Ethics Committee.
At a launch meeting of the project steering group, a facilitated mapping of assets, local resources and networks began (step 2). Over the course of eight meetings,. the public awareness campaign was planned (step 3) and implemented (step 4). This campaign comprised three elements:
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Stories: A DVD (Breaking the Silence) was produced and presented eight local people's stories of experiences of conversations and care, both with their loved ones, and their own reasons for wanting to talk about and plan for their future.
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Outreach and information: Branded promotional and resource materials (web and print) were developed for outreach activities. A website provided signposting to national and local information and resources. Posters and flyers were distributed through partner health and social care organisations and agencies. Local media such as radio and newspapers were used to raise the profile of the campaign.
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Education: Eleven facilitated training workshops about end-of-life conversations and care were held across Cumbria in six locations. The DVD was presented and conversation cards used to facilitate individual awareness, practice talking about these issues and identify personal actions to take arising from the workshop.
An evaluation of each workshop was undertaken using a short survey form and analysed using descriptive statistics and a coding of responses to open questions.
Findings: case study 1
The following outcomes were identified with respect to the public health campaign and workshops over a 3-month period. Radio and regional newspapers coverage was estimated to have reached 200 000 people with positive media stories. The website had 3645 visitors (23 visitors per day; each person viewed an average of five pages and stayed on the site for an average of 4 min).
The 11 workshops were attended by 93 people. For the 63 participants who gave their age, the age range was between 26 and 88 years. Just under a third (n=18, 29%) were less than 50 years old, the majority (n=34, 54%) were 55–64 years old and a small proportion (n=11, 17%) were over 65 years. Seventy-three (79%) participants were female and twenty (21%) male. Participants comprised both members of the public and professionals. The professional (staff) participants included current and retired nurses and social workers working for healthcare, local authority and third sector organisations. Professional participants expressed an interest in learning how to start conversations both with the public and their own families. Sixty-two participants self-identified as patients (n=8, 13%), family members (n=38, 61%), carers (n=17, 27%), volunteers (n=17, 27%) and others (n=19, 30%). Pilot funding ended at this point.
Case study 2: engaging six communities across one region—Merseyside and Cheshire
The second case study presents an overview of an initiative undertaken in 2011 across Merseyside and Cheshire supported by the Merseyside and Cheshire Cancer Network (MCCN). It draws upon the learning from the Cumbria project, yet used a facilitated asset-based approach to engage six communities to simultaneously lead their own awareness initiatives. The initiating organisation (MCCN) funded and committed to a 1-year programme of activity across Merseyside and Cheshire (step 1) and invited community host organisations to take a lead in their locality. Six community host organisations participated, comprising hospices, voluntary sector and local NHS organisations including public health.
In each of the six localities, the community hosts invited local organisations to participate in a facilitated community convening event (step 2). The organisations that responded were drawn from the health and social care sector, faith groups, carers and support groups, and specific interest groups/associations. At these events, individual, group and community assets were identified and a shared vision for their community was developed.
At a second meeting (step 3), the summarised assets were reviewed by the participants and priority areas for future activity were identified. Across the six MCCN localities, the priorities independently identified in the communities could be classified under one of five priority areas: information, outreach, education, leadership and sustainability. In each of these areas, specific locally appropriate actions were identified and priorities linked to the focus or collaboration between specific organisations and groups. Each of the participating individuals and organisations then engaged their families, clients, staff, team and respective communities in order to address the actions in ways that suited the people, groups and constituencies in their community (step 4).
Evaluation of delegates following each session, as well as with the six local lead organisations, was undertaken immediately following the events and then 2 months later by the lead organisation.
Findings: case study 2
The activity undertaken across the region led to the involvement of 143 organisations across the six communities. Two areas are presented here: the nature of the assets available in communities and the common priority areas for action.
Nature of assets available in communities
The assets identified in each locality could be categorised under six types of assets and strengths as developed by the ABCD Institute7 (table 2). As illustrated here, the assets were both tangible, such as physical resources or skills, alongside less visible, but equally important, assets such as personal values, local beliefs and stories held by individuals, local groups or networks within and between themselves.
Common priority areas for action
The five priority areas for action identified across the six localities in Merseyside and Cheshire were: information, outreach, education, leadership and sustainability. These mirrored the areas of action delivered in Cumbria.
The need for information or making what information was already available more accessible to a wider constituency was present in both case studies. In Cumbria, accessible information and resources were made available through a central website about stories, conversations, planning, care and events. Across Merseyside and Cheshire, participants did not fully know what was available in their own community. They recognised that in order to help the members of their groups to be directed or referred to appropriate services and help, information about the wider assets needed to be more widely known and accessible. This specific priority was illustrated here in one locality's community vision: “We want the people in our community to all know what resources are available to them in their current circumstances” (MCCN Site 4: Community Vision Statement).
Outreach activities focused on both raising the profile of end-of-life issues, death, dying and bereavement, and greater communication between individuals and services. A range of media were used in both case studies from new e-technologies, to print, local radio and the local press, including the development of distinctive brands. In Cumbria, this was delivered as Cumbria Conversations for Life. In Merseyside and Cheshire, local identities were developed:
“One of our community members was an artist who came to a meeting with a piece of art he'd created out of recycled materials. This inspired the name and brand for our local initiative with materials, a website and outreach efforts that followed.” (MCCN Site 6).
Education took multiple forms across case study sites (table 3): formal and informal ‘teaching’ and information giving sessions to care staff and the public, public education through the media outlets described above and planned engagement with workplaces, through payslip inserts.
The importance of leadership and sustainability illustrates a difference between the two cases. Leadership in Cumbria was held by the steering group at a strategic level and used an external project lead to facilitate and direct the work. The pilot was time limited, and further work was undertaken independently by individual partners and projects rather than as a result of ongoing funded multiagency work. The Merseyside and Cheshire case study illustrates how partnerships between community groups and health and social care organisations can provide a dynamic that appears to lead to more sustainable working. The development of community-initiated Living and Dying Well Partnerships, the establishment of community development lead posts, representation by community groups on health and end-of-life care boards and skill share between organisations show early indications of integrating public health approaches into the mainstream system.
Implications
A facilitated asset-based model for community engagement provides a way to catalyse the launch of community-wide engagement related to end-of-life conversations and care, in ways that reflect a unique locality, services and population. The case studies have demonstrated that communities have existing strengths and assets and want to engage with this issue (death and dying) but often do not know how to begin. It was recognised that community engagement is an activity that requires more than a 1-week-a-year focus and it is not the sole job of any one organisation. Raising community-wide awareness required the involvement of multiple organisations from the start. The initial focus upon the assets within a community was crucial for initial engagement and momentum.10 An asset (vs deficit) approach provided affirmation to the individuals and organisations participating, and helped them recognise the opportunity working together provided to build upon each other's strengths.
The asset-based approach described here comprises steps that address information gathering, planning, actions and review (figure 1). These steps are similar to those used in many quality initiatives11 and participatory research.12 However, this approach sits more clearly in the domain of participatory action research where the issue to be addressed and process are clear at the outset, but not necessarily the means by which this will be achieved.13 This has implications for practice, in that clinicians working with communities undertaking this work need to be aware that while the end goal of achieving greater public awareness and engagement is clear, the specific assets, focus, actions or outcomes appropriate to any unique community will not be known at the start. This also has implications for the policymakers, funders and lead organisations, who have to be willing to engage with and trust the process, allowing communities to name, develop and personalise approaches and outcomes specific to their context. For researchers, there are also challenges in terms of evaluation processes and lack of agreed outcome measures. To date, evaluations have been limited to internal small-scale work. Future research is required to systematically evaluate the process and long-term outcomes of such initiatives.
Conclusions
A facilitated process focusing on the assets within a community can catalyse public engagement efforts across sectors at a community level. Resources and strengths (assets) that can support awareness of end-of-life conversations and care exist in varied community organisations, yet these are not always known or connected. Although national campaigns provide a framework and resources for public awareness work, communities and community-based leadership must be aligned with and committed to participating in these aims. As a consequence, both top-down and bottom-up activities are needed. National policy initiatives and regional system support provide a legitimacy and focus, and top-down leadership is essential for funding. However, it is the real and committed engagement of individuals and organisations working across a community that holds the wisdom, skills, connections and experience required to effect change where people live.
Acknowledgments
The Cheshire and Merseyside Community Engagement initiative on death, dying and loss was funded by Cheshire and Merseyside Clinical Networks from Multi-Professional Education and Training Levy (MPET) monies from the Department of Health This initiative was the result of evaluation work undertaken at a local level and with the Dying Matters Coalition and was a recommendation from this.
Footnotes
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Contributors MM developed the approaches, planned and co-designed delivery of case studies 1 and 2 with respective coauthors; conducted the facilitated delivery and gathered and reported outcomes from case Studies 1 and 2; ensured ethical approval in case study 1; and drafted the article. She acts as the guarantor of the overall content. KF designed the evaluation and evaluated outcomes for case study 1; reviewed outcomes of both case studies 1 and 2; and drafted the article, including references. EO planned and conducted the oversight and reported outcomes of case study 2 and reviewed the article. JRA planned and ensured the oversight and reported outcomes of case study 1 and reviewed the article from a public health perspective.
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Funding NHS Cumbria funded the Cumbria pilot. Lancaster University Faculty of Health and Medicine Strategic Knowledge Exchange Award Supported the writing of this paper. Lancaster University and commissioned project delivery by named case study partners.
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Competing interests None.
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Ethics approval Cumbria County Research Ethics Committee (for a portion of the study).
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Provenance and peer review Not commissioned; externally peer reviewed.
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Data sharing statement Any unpublished data related to this study can be requested by contacting any of the relevant contributing authors directly.