University of Edinburgh, Edinburgh, UK.
Durham University, Durham, UK.
Dementia (London). 2023 Oct;22(7):1420-1439. doi: 10.1177/14713012231190775. Epub 2023 Jul 27.
Many people living with dementia are 'on the margins', not accessing services and support, despite policy and care advancements. The COVID-19 pandemic exacerbated this, with the closure of face-to-face support during lockdowns in the UK and globally. The aim of the 'Beyond the Margins' project was to develop, implement, and evaluate a face-face programme of support with, by and for people with direct experience of dementia who are on the margins of existing services and support. In March 2020 the project was interrupted by the outbreak of the COVID-19 pandemic and it changed to an online format. The three-phase participatory action research project included 40 people living with dementia, 26 care partners and 31 health and social care practitioners. A seven-week online personal development programme called Getting On with Life (GO) was developed, delivered, and evaluated. This paper focuses on the participatory approaches used to develop and implement the GO programme, and the resulting aspects of its approach to facilitation and content. Key features include the GO Programme's principles of providing a safe and a respectful space, and the programme's values of: Everyone who comes already knows things, can learn things and can teach things; Doing things 'with' each other, rather than 'for' or 'to' each other; Personalised goals-led by the needs of participants rather than an imposed agenda. A key finding was the importance of developing post-diagnostic programmes as a 'sandwich', providing a safe space for learning that is preceded by understanding pathways to access the programme and followed by explicit consideration of the next steps in increasing social engagement.
许多患有痴呆症的人都处于“边缘”状态，尽管政策和护理有所进步，但他们仍无法获得服务和支持。COVID-19 大流行使这种情况更加恶化，英国和全球各地的封锁导致面对面支持关闭。“超越边缘”项目的目的是开发、实施和评估一项针对处于现有服务和支持边缘的有直接痴呆症经验的人、由他们和为他们提供的面对面支持计划。2020 年 3 月，该项目因 COVID-19 爆发而中断，并改为在线形式。该三阶段参与式行动研究项目包括 40 名患有痴呆症的人、26 名护理伙伴和 31 名卫生和社会保健从业者。开发、提供和评估了一个名为“继续生活”（GO）的为期七周的在线个人发展计划。本文重点介绍了用于开发和实施 GO 计划的参与式方法，以及其促进和内容方法的结果方面。主要特点包括 GO 计划提供安全和尊重空间的原则，以及该计划的价值观：每个来的人都已经知道一些事情，可以学习一些事情，也可以教一些事情；相互“做”事情，而不是“为”或“对”彼此；个性化的目标主导，由参与者的需求决定，而不是强加议程。一个关键发现是，将诊断后计划作为“三明治”来开发非常重要，为学习提供安全空间，在此之前，要了解获得该计划的途径，之后，要明确考虑增加社交参与的下一步。
