Community engagement is increasingly seen as an important part of end of life care but a shared language, definition or understanding has not existed until now.
Community engagement has been on the agenda of health and social care for some time. It is recognised as a way to more appropriately meet the needs of individuals and their communities, improve access, and influence important but often intangible outcomes such as social capital, well-being, community capacity and resilience.
There is a great deal of interest from end of life care services worldwide about how community engagement approaches can be integrated into practice. A range of terms have emerged to describe this work, including: a public health approach to palliative care, health promoting palliative care, social approaches to death and dying and compassionate communities.
Practice examples are described in the UK and internationally but there can be confusion about how to categorise different approaches. It was clear from the survey of UK end of life care services we conducted in 20121 that although there was a great deal of interest from the sector, confusion remained about the terms used to describe the work and how innovative projects empowering communities could be understood alongside more traditional forms of work in the community, such as through consultation or public awareness events.
Ladder of participation
Much of the work on community engagement in health has its roots in disciplines such as urban planning and community development and this paper draws heavily on those influences.
In our paper, we have developed a definition of community engagement in end of life care and this is complemented by a spectrum of engagement. The spectrum is based on the concept of a ladder of participation, with sequential steps representing more meaningful forms of engagement.
The spectrum extends from informing – organisation provides information to the community, consulting – organisation gathers views from the community, co-producing – community has a role in determining how their views are used, collaboration – partnership between the community and organisation and empowerment – community has the power to develop their own solutions to issues facing them.
The spectrum also describes the factors that can support or hinder the process. The model provides services with the opportunity to reflect on where their current work sits on the spectrum, where they would like to be and what factors would support them in moving towards more meaningful engagement activities. It also allows the underlying principles that inform the work to be appreciated.
Commenting on the research, Heather Richardson, National Clinical Lead at Help the Hospices, said: “Community engagement is an essential element of hospice care and vital to the delivery of high quality care on the part of hospices now and in the future. The majority of hospices recognise it as such and are highly committed to the relationship they have with their local communities. What is often less clear to them is the specific nature of this relationship and how they may want to develop it to meet changing needs in their area.
“The definition and spectrum of involvement proposed by Sallnow and Paul is very helpful in this respect and I would recommend the paper as essential reading by hospices as they consider future strategic plans around volunteering, fundraising, new models of care and public education.”
The paper is available to download from the Critical Public Health webpage – and the first 50 downloads via this link will be free!
- Paul, S and Sallnow, L. Public health approaches to end-of-life care in the UK: an online survey of palliative care services. BMJ Support Palliat Care 2013;3:196-199 doi:10.1136/bmjspcare-2012-000334