Lived experience involvement
People experiencing homelessness often don’t have access to the palliative and end-of-life care they may need. To understand how this can be improved, it is important to collaborate with people with a lived experience of homelessness when carrying out research. This can add more depth and insight from experience and ultimately create better evidence to improve systems, services and experiences.
All the work described on this website has involved people with lived experience. In most cases these Lived Experience advisors (sometimes also called ‘Experts by Experience’) have been volunteers supported by the Pathway charity – who have a lived experience programme. However, some of these people are in peer support or paid advisory roles.
The current IMPROVE project has a 5-person lived experience steering group. Three are volunteers with no other paid role, all of whom have experience of homelessness.
Tiffin recommendations
In general, as a society we don’t often talk about death and dying. We recognise that homelessness is often associated with loss, in lots of different ways. We recognise that there is a need to consider how to talk about issues related to palliative care in sensitive and meaningful ways.
Through a previous research project, we coproduced the TIFFIN recommendations with the aim of guiding the way in which the team works with people with lived experience in the context of palliative care research, to enable positive outcomes for everyone involved.
Study within a project ‘SWAP’
The IMPROVE programme has an embedded ‘study within a project’. This is looking at the experiences of our lived experience group, as well as documenting the support, infrastructure and other types of input needed to help them support the project effectively. It is hoped that the TIFFIN recommendations will have ensured that this has been done effectively and safely, but the SWAP will also enable further thoughts on what best practice in this area will look like in the future.