Sociology Department, Faculty of Arts and Humanities, Manchester Metropolitan University, Manchester M15 6LL, UK.
VoiceBox Inc., Bolton, Lancashire BL2 1DW, UK.
Int J Environ Res Public Health. 2023 May 18;20(10):5858. doi: 10.3390/ijerph20105858.
There are no effective intervention studies for people using substances who are at, or near, the end of their lives. The needs of this group of people have been consistently overlooked even within the literature that identifies marginalised groups of people in need of greater recognition in palliative and end-of-life care. The aims of the project were to: (i) determine what a new, co-produced, model of care should look like for people using substances needing palliative and end-of-life care, and (ii) establish whether the new model had the potential to improve people's access to, and experience of, end-of-life care. This paper presents the development of the new approach to care. It was developed using participatory action research principles over a course of online workshops during the COVID-19 pandemic lockdown period in the UK. A theory of change that aims to inform future policy and practice development is presented. While the ambition of the research was stunted by the pandemic, the process of its development and dissemination of the model and its resources has continued. Response from participants highlighted the importance of this work, however, in this new field of policy and practice, preparatory work that engages a wide range of stakeholders is crucial to its success. This relationship building and topic engagement are major parts of implementation before more substantial and sustainable development goals can be met.
针对生命末期或临近生命末期的物质使用者,目前尚无有效的干预研究。即使在文献中确定了需要在姑息治疗和临终关怀中得到更多认可的边缘化人群,这一群体的需求也一直被忽视。该项目的目的是:(i) 确定为需要姑息治疗和临终关怀的物质使用者提供新的、共同制定的护理模式应该是什么样子;(ii) 确定新模式是否有可能改善人们获得和体验临终关怀的机会。本文介绍了这种新的护理方法的发展。它是在英国 COVID-19 大流行封锁期间,通过一系列在线研讨会,使用参与式行动研究原则开发的。提出了一个旨在为未来的政策和实践发展提供信息的变革理论。虽然该研究的目标受到了疫情的限制,但该模式及其资源的开发和传播过程仍在继续。参与者的反馈强调了这项工作的重要性,然而,在这一政策和实践的新领域,开展广泛的利益相关者参与的筹备工作对于其成功至关重要。在实现更实质性和可持续的发展目标之前,建立这种关系和参与主题是实施的主要部分。