Abstract
Background
People experiencing homelessness have high rates of multi-morbidity and age-related conditions at a young age. Despite having high support needs, they have disparately low access to palliative care services and often die at a young age. To facilitate access to support for this group towards the end of life, a multi-professional approach should be taken. Over recent years, clinical and research activities have begun to address this issue. However, until now, there has been no centralised United Kingdom-based group to facilitate collaboration and shared learning.
Aim
To build multi-professional partnerships across the United Kingdom to promote shared learning and a multidisciplinary approach to supporting people experiencing homelessness who may be approaching the end of their lives.
Method
This project had three workstreams: (1) development of a Palliative Care and Homelessness Extensions of Community Healthcare Outcomes network; (2) a rapid review around involving people with experience of multiple exclusion in palliative and end-of-life care research; and (3) a qualitative study to identify recommendations for involving people with lived experience of homelessness in future palliative and end-of-life care research.
Results: Workstream 1
A National Palliative Care and Homelessness Extensions of Community Healthcare Outcomes (ECHO) network was successfully established in the UK, with 10 sessions running over 12 months. A total of 268 people registered to the network, with an average of 52 participants per session. Evaluation of the network illustrated positive experiences and appetite for continuation of the network. The majority of attendees surveyed (78%) agreed that the network had increased their awareness of complexities and challenges faced by people experiencing homelessness and 85% of respondents reported better connections with others who are interested in or are working in this field.
Workstream 2
A rapid review was conducted to summarise existing evidence and reflections on co-producing palliative care research with inclusion health groups, including people with lived experience of homelessness. Given the scarcity of existing research within this area, the review provided a starting point from which to explore the successes and challenges of co-research in this field. The review advocates for greater guidance around the involvement of people with lived experience of homelessness in palliative and end-of-life care research.
Workstream 3
Professionals with experience of involving people experiencing homelessness in their work were interviewed (
n
= 16), and focus groups were held with people with lived experience of homelessness (
n
= 11). Recommendations were co-developed to support researchers to involve people with lived experience of homelessness in their palliative and end-of-life care research – the TIFFIN recommendations.
Conclusion
This project has highlighted the appetite for collaboration and shared learning among professional groups around supporting people experiencing homelessness who have advanced ill health. The TIFFIN recommendations, developed through this grant promote, trauma-informed, meaningful involvement of people with lived experience of homelessness in palliative and end-of-life care research. Due to the success of the network, a second round of sessions ran from November 2023 to November 2024, with a third round of the network planned for Spring 2025.
Funding
This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135250.