Hudson Briony, Crooks Jodie, Shulman Caroline, Flemming Kate
Marie Curie, Research and Policy Directorate, London, UK.
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
Public Health Res (Southampt). 2025 Mar 12:1-11. doi: 10.3310/JWRG6933.
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.
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.
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.
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 ( = 16), and focus groups were held with people with lived experience of homelessness ( = 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.
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.
This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135250.
无家可归者多种疾病并存及患与年龄相关疾病的比例在年轻时就很高。尽管他们有很高的支持需求,但获得姑息治疗服务的机会却极低,且常常英年早逝。为了在生命末期为这一群体提供支持,应采取多专业协作的方式。近年来,临床和研究活动已开始关注这一问题。然而,迄今为止,英国尚无一个集中的团体来促进协作与经验共享。
在英国建立多专业伙伴关系,以促进经验共享,并采用多学科方法来支持那些可能已接近生命末期的无家可归者。
该项目有三个工作流程:(1)开发社区医疗成果网络的姑息治疗与无家可归者扩展项目;(2)围绕让多重排斥经历者参与姑息和临终关怀研究进行快速综述;(3)开展一项定性研究,以确定让有过无家可归经历者参与未来姑息和临终关怀研究的建议。
工作流程1:在英国成功建立了一个全国性的社区医疗成果网络的姑息治疗与无家可归者扩展项目(ECHO),在12个月内开展了10次会议。共有268人注册加入该网络,每次会议平均有52名参与者。对该网络的评估显示了积极的体验以及继续开展该网络的意愿。参与调查的大多数与会者(78%)一致认为,该网络提高了他们对无家可归者所面临的复杂性和挑战的认识,85%的受访者表示与该领域感兴趣或从事相关工作的其他人建立了更好的联系。
工作流程2:进行了一次快速综述,以总结与包括有过无家可归经历者在内的包容性健康群体共同开展姑息治疗研究的现有证据和思考。鉴于该领域现有研究稀缺,该综述提供了一个起点,用以探索该领域合作研究的成功之处与挑战。该综述倡导为让有过无家可归经历者参与姑息和临终关怀研究提供更多指导。
工作流程3:对在工作中让无家可归者参与进来的专业人员进行了访谈(n = 16),并与有过无家可归经历者举行了焦点小组讨论(n = 11)。共同制定了相关建议,以支持研究人员让有过无家可归经历者参与他们的姑息和临终关怀研究——即蒂芬建议。
该项目凸显了专业团体对于围绕支持健康状况不佳的无家可归者开展协作与经验共享的意愿。通过这笔资助制定的蒂芬建议促进了有过无家可归经历者在创伤知情的情况下有意义地参与姑息和临终关怀研究。由于该网络取得成功,第二轮会议于2023年11月至2024年11月举行,计划于2025年春季开展第三轮网络活动。
本文介绍了由英国国家卫生与保健研究所(NIHR)公共卫生研究项目资助的独立研究,项目编号为NIHR135250。