3136改善患者和公众对痴呆症研究的参与:为产生影响创造条件

IF 6 2区 医学 Q1 GERIATRICS & GERONTOLOGY
N Morley, K Liabo, V Goodwin
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引用次数: 0

摘要

痴呆症是健康老龄化的主要挑战,对痴呆症的研究是必不可少的。在研究中纳入有痴呆症生活经历的人会带来更高质量、更有影响力的结果。但是,成功的参与可能是复杂的,常规的参与实践可能并不总是对痴呆症患者具有包容性。该项目旨在强调提高公众参与痴呆症研究的必要性,并支持研究人员与有生活经验的人接触。方法:我们与经验丰富的专家(痴呆症患者)和痴呆症研究人员合作,探索nih资助的痴呆症研究中当前PPI活动。混合方法数据收集包括在线问卷和结构化对话,并辅以网络搜索。在MAXQDA中组织数据,并在MindGenius中进行可视化映射,以确定模式和差距。结果38名不同的参与者,包括研究人员、医疗保健专业人员、资助小组成员和经验专家,做出了贡献。他们强调,痴呆症对个人的影响是独特的,应该根据个人的能力和偏好进行调整。他们鼓励避免假设,关注积极的变化,特别是对服务不足的社区。创造性的方法被强调为促进讨论和使非语言个体能够表达他们的经验的有效方法。开放地从生活经验中学习和适应能力是从任务导向转向关系方法和加深理解的关键。然而,与会者还指出,僵化的资助程序、有限的资源以及缺乏对参与的理解可能会破坏这些做法。他们强调需要资助者指导方针、道德工作框架和支持共享学习的空间。结论促进痴呆症患者和公众参与的良好做法对于加强研究和影响至关重要。这项工作旨在突出关系方法的例子,促进共同学习和有意义的参与,并解决结构性障碍,为实现有影响力和包容性的痴呆症研究提供支持性框架。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
3136 Improving patient and public involvement (PPI) in dementia research: building conditions for impact
Introduction Dementia is a major challenge to healthy ageing, and research into dementia is essential. Including people with lived experience of dementia in research leads to higher-quality, more impactful outcomes. But successful engagement can be complex and routine involvement practices may not always be inclusive for people with living with dementia. This project aimed to highlight what is needed to improve public involvement in dementia research and support researchers in engaging those with lived experience. Method We collaborated with experts by experience (people living with Dementia) and dementia researchers to explore current PPI activities within NIHR-funded dementia research. Mixed method data collection included an online questionnaire and structured conversations, supplemented with web searches. Data was organised in MAXQDA and visually mapped in MindGenius, identifying patterns and gaps. Results A diverse group of 38 participants, including researchers, healthcare professionals, funding panellists, and experts by experience, contributed. They emphasised that dementia affects individuals uniquely and involvement should be tailored to individual’s abilities and preferences. They encouraged avoiding assumptions and a focus on positive change, particularly for underserved communities. Creative approaches were highlighted as effective for prompting discussions and enabling non-verbal individuals to express their experiences. Openness to learning from lived experiences and adaptability were key in shifting from task-oriented to relational approaches and deepen understanding. However, participants also identified that rigid funding processes, limited resources, and a lack of understanding of involvement can undermine these practices. They emphasised the need for funder guidelines, ethical working frameworks, and supportive spaces for shared learning. Conclusion Promoting good practice in Patient and Public Involvement for people with dementia is critical to enhancing both research and impact. This work seeks to highlight examples of relational approaches that foster co-learning and meaningful engagement, and addresses structural barriers, providing supportive frameworks to achieve impactful and inclusive dementia research.
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来源期刊
Age and ageing
Age and ageing 医学-老年医学
CiteScore
9.20
自引率
6.00%
发文量
796
审稿时长
4-8 weeks
期刊介绍: Age and Ageing is an international journal publishing refereed original articles and commissioned reviews on geriatric medicine and gerontology. Its range includes research on ageing and clinical, epidemiological, and psychological aspects of later life.
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