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Compassionate Neighbours Hubs: A community based approach to death and dying

What is the research?

The Compassionate Neighbours project is a community-based approach to supporting people who are coming to the end of their life in their community. It was established at St Joseph’s Hospice in London in 2014. Staff at the hospice worked with Social Action for Health and people from the local community to co-design a volunteer-led approach. The resulting project has growth into a ‘social movement’ – or community – of 300 compassionate neighbours attached to St Joseph’s alone.

A compassionate neighbour is someone who is trained and ‘matched’ with someone in the community who may be socially isolated and approaching the end of life. Some of the compassionate neighbours are involved with are the ‘Compassionate Hubs’.

The first Compassionate Hub was established at Limetree Court, a supported residential setting by a small group of compassionate neighbours. The neighbours worked with the staff of Limetree to develop a weekly social group for residents. Residents who previously had not met each other are able to meet, make social connections and develop relationships with each other.

The Compassionate Neighbours team have recently received funding from the Big Lottery to expand this model to new supported housing and residential care sites across Hackney and Tower Hamlets.

Why is this research important?

The Compassionate Neighbours project takes a community-focused approach towards people who may be living with a long term or terminal illness, are elderly or frail, socially isolated or nearing the end of life through age or illness. This project recognises that people in this phase of life have a desire to feel connected with their communities and to be socially included, a need which is not best met through medical care. While this peer-based model may feel familiar to those within the mental health sector, in palliative care this is a relatively new approach to supporting people who may be facing the complex emotions that come with thinking about living, death and dying.

It is important for us to understand how a community approach to living, death and dying, similar in many ways to peer support seen in mental health, can be effective and can be successfully established in new environments.

How is McPin Involved?

We are conducting a qualitative evaluation of this project to understand if and how compassionate hubs achieves the aims it intends to, and how it can be successfully rolled out across other sites. We are doing this by:

  • Collecting observational information by spending time at the developing hubs in building relationships with residents and compassionate neighbours
  • Conducting interviews with staff, compassionate neighbours and residents to understand their experiences of the project
  • Understanding how reproducing this project at scale in new sites has happened and any impacts on the project
  • Producing reports based on the analysis of this information and a package of evaluation tools for the roll-out of future hubs

How is experiential knowledge contributing to the project?

We have spent time talking informally with many compassionate neighbours to understand what the project is, to compare our own understanding with theirs, and about and what kind of information we should be collecting.

What is the current status of the project?

We are currently still in the process of data collection; site observations and interviews with compassionate neighbours. We plan to speak with some of the residents about their experiences of the project.

Who do I contact for more information?

For more information about the project, or to speak to a researcher, please contact Tanya Mackay: tanyamackay@mcpin.org or Rachel Temple by email: racheltemple@mcpin.org