Building multi-professional UK partnerships and networks to improve access to palliative care for people experiencing homelessness.

Briony Hudson, Jodie Crooks, Caroline Shulman, Kate Flemming
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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.

建立英国多专业合作关系和网络,改善无家可归者获得姑息关怀的机会。
背景:无家可归的人在年轻时患有多种疾病和与年龄有关的疾病的比例很高。尽管他们有很高的支持需求,但他们获得姑息治疗服务的机会却很低,而且往往在年轻时死亡。为了方便这个群体在生命结束时获得支持,应该采取多专业的方法。近年来,临床和研究活动已经开始解决这个问题。然而,到目前为止,还没有一个集中的英国小组来促进合作和共享学习。目的:在联合王国各地建立多专业伙伴关系,促进共享学习和多学科方法,以支持可能即将结束生命的无家可归者。方法:本项目有三个工作流程:(1)开发社区医疗保健成果网络的姑息治疗和无家可归者扩展;(2)在姑息治疗和临终关怀研究中涉及多重排斥经历者的快速回顾;(3)一项定性研究,以确定在未来的姑息治疗和临终关怀研究中涉及无家可归者的建议。结果:工作流程1:在英国成功建立了全国社区医疗保健成果的姑息治疗和无家可归者扩展(ECHO)网络,为期12个月,共10次会议。共有268人注册了该网络,平均每次会议有52人参加。对网络的评估表明了积极的体验和对网络延续的渴望。接受调查的大多数与会者(78%)同意,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,他们与其他对这一领域感兴趣或正在从事这一领域工作的人建立了更好的联系。工作流程2:进行了快速审查,以总结与包容健康团体(包括有无家可归生活经历的人)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的稀缺性,本综述为探索该领域合作研究的成功和挑战提供了一个起点。该报告倡导对有过无家可归经历的人参与姑息治疗和临终关怀研究提供更大的指导。工作流程3:采访了在工作中涉及无家可归者的专业人员(n = 16),并与有无家可归生活经历的人(n = 11)进行了焦点小组讨论。共同制定了建议,以支持研究人员让有无家可归生活经历的人参与他们的姑息治疗和临终关怀研究——TIFFIN建议。结论:该项目强调了专业团体之间在支持患有严重疾病的无家可归者方面进行合作和共享学习的意愿。通过这项拨款制定的TIFFIN建议,促进了有过无家可归经历的人在姑息治疗和临终关怀研究中的创伤知情和有意义的参与。由于该网络的成功,第二轮会议于2023年11月至2024年11月举行,第三轮网络计划于2025年春季举行。资助:本文介绍了由国家卫生与保健研究所(NIHR)公共卫生研究计划资助的独立研究,奖励号为NIHR135250。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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