England’s South-west Peninsula is predominantly rural, contains a large number of residents aged 65+, and includes several areas of rural and coastal deprivation. People living in rural and low-income areas often face significant disadvantages at the end of life. Yet, there is a very limited understanding of the specific support needs of rural, coastal, and low-income communities. To identify effective ways of building community support for good dying and grieving, a regional multi-sector research partnership designed and delivered a community engagement initiative. The program aimed to capture people’s experiences of seeking help, the topics that mattered most to them, and the forms of community support they found most helpful. This paper reports participants’ views on the roles communities can play in end-of-life care. It considers the key lessons from involving communities in open discussions about death and dying. The initiative used a range of community engagement activities, including: the ‘Departure Lounge’ interactive installation together with four focus groups held with interested people in different local venues; the joint development of a ‘Community Conversation’ toolkit used by Community Builders to hold discussions with individuals who had direct experience of end-of-life care and with their carers; one focus group involving Community Builders; and a storytelling project conducted with three people who had been bereaved.
Participants particularly appreciated community support during end-of-life situations or bereavement that created meaningful connections, offered impartial peer support, was flexible to personal needs, and assisted them in navigating services. Creative engagement approaches appear promising for enabling researchers and practitioners to gain deeper insight into the needs and priorities of underserved groups. Partnering with established community organizations proved essential for effective involvement, though local contextual factors influenced the number of participants. Local community organizations are ideally positioned to provide support to people at the end of life. The project demonstrated strong potential for collaboration between these organizations and palliative care and bereavement services. Such partnerships could help build local knowledge and capabilities while developing lasting, community-led solutions to address specific regional needs.
