Centre for Chronic Illness and Ageing, Institute for Lifecourse Development, School of Human Sciences, University of Greenwich, London, UK
Federal University of Pelotas, Pelotas, Brazil.
BMJ Open. 2024 Oct 11;14(10):e091241. doi: 10.1136/bmjopen-2024-091241.
Receiving a diagnosis of dementia is a seminal moment in many people's lives. It can be associated with anger and grief for both the person with dementia and their network. Despite this, there is no provision for emotional support to help people affected by dementia manage the impact of receiving that diagnosis. As such, a postdiagnostic intervention to help people process and adjust to a diagnosis of dementia is needed. This protocol describes the initial work to be undertaken as part of a Programme Development Grant. The aims are to synthesise evidence for existing interventions, understand the implementation context and establish an advisory board.
Phase 1 will consist of two systematic reviews to synthesise research evidence for existing interventions in related areas. Phase 2 will consist of two qualitative research studies. Study 1 is a UK-wide qualitative survey to understand the current lived experience of receiving a diagnosis and postdiagnostic support. Study 2 is a local qualitative study in which three groups of stakeholders will be asked about the perceived barriers and facilitators to implementing a postdiagnostic intervention in Natuional Health Services (NHS). In Phase 3, an advisory group of people living with dementia, carers and other professionals will be established to provide advice and feedback and contribute to the codevelopment of the initial intervention.
Health Research Authority, 15 July 2024. All data will be held in accordance with North East London NHS regulations, who act as sponsor of this development work. We will engage with policy professionals in Study 2 (Phase 2) and through this network disseminate our findings to facilitate policy change. The use of coproduction to ensure people with dementias voices are heard throughout this work will result in impact in health and well-being.
被诊断患有痴呆症是许多人生活中的一个重要时刻。这可能会让痴呆症患者及其社交网络感到愤怒和悲伤。尽管如此，目前并没有为情感支持提供服务，以帮助受痴呆症影响的人应对这一诊断的影响。因此，需要进行一项诊断后干预，以帮助人们处理和适应痴呆症的诊断。本方案描述了作为项目开发资助的一部分将进行的初步工作。目的是综合现有干预措施的证据，了解实施背景并建立咨询委员会。
第 1 阶段将包括两项系统评价，以综合相关领域现有干预措施的研究证据。第 2 阶段将包括两项定性研究。研究 1 是一项全英范围的定性调查，旨在了解接受诊断和诊断后支持的当前实际体验。研究 2 是一项当地的定性研究，将要求三组利益相关者了解在国民保健服务（NHS）中实施诊断后干预的感知障碍和促进因素。在第 3 阶段，将成立一个由痴呆症患者、照顾者和其他专业人员组成的咨询小组，为初始干预措施的共同制定提供建议和反馈，并做出贡献。
健康研究管理局，2024 年 7 月 15 日。所有数据将按照东安格利亚 NHS 规定保存，该规定是这项开发工作的赞助商。我们将在研究 2（第 2 阶段）中与政策专业人员合作，并通过该网络传播我们的发现，以促进政策变革。使用共同制定来确保痴呆症患者的声音在整个工作过程中得到倾听，将对健康和幸福感产生影响。
