背景:对痴呆症患者及其照顾者的技术相关研究通常旨在使人们能够在家中居住更长时间,并防止不必要的入院。发展以人为本,有效,和伦理研究,患者和公众参与(PPI)是必要的,尽管这可能会被认为是更困难的队列。随着健康和护理相关技术的迅速发展,这篇综述探讨了研究人员和利益相关者(如痴呆症患者及其照顾者)之间的合作是如何进行的,以及产生了什么影响。
目的:这篇综述旨在描述迄今为止在与技术相关的痴呆研究中使用的PPI的方法,以及PPI在这一领域的障碍、促进因素和影响。
方法:对与痴呆有关的文献进行范围综述,技术,PPI使用MEDLINE进行,PsycINFO,Embase,和CINAHL。论文由2位作者筛选纳入。然后由相同的2位作者使用预先设计的数据提取表提取数据。第三作者支持在每个阶段解决任何冲突。然后对从事PPI的障碍和促进者进行了审查和主题化。
结果:搜索产生了1694篇论文,筛查后进行分析的有31例(1.83%)。大多数(21/31,68%)没有明确区分作为PPI开展的活动和研究参与者开展的活动,因此,他们的参与并不容易符合美国国家卫生和护理研究所对PPI的定义.这种混合的参与大多集中在审查或评估技术原型。描述了一系列方法,最典型的是使用焦点小组或共同设计研讨会。总的来说,29%(9/31)描述参与整个研究周期的多个阶段,有时有分享决策权的证据。一些人(23/31,74%)评论了有效PPI的障碍或促进者。确定的挑战通常是与具有严重认知障碍的人一起工作以及时间和资源压力的问题。据报道,PPI的影响在很大程度上是积极的,包括患者和公共合作伙伴的经验,对研究质量的影响,以及它为研究人员提供的学习经验。只有4篇(13%)论文使用了正式的方法来评估影响。
结论:研究人员经常让痴呆症患者和其他利益相关者参与技术研究。目前,尽管渴望高水平的参与和伙伴关系工作,但参与的范围往往有限。涉及痴呆症患者,他们的照顾者,和其他利益相关者可以对研究产生积极影响,耐心和公共伙伴,和研究人员。更广泛地报告方法和促进策略,以及更正式的记录和报告有意义影响的方法,将是有帮助的,以便所有参与研究人员,病人,和其他利益相关者-可以学习我们如何最好地一起进行研究。
BACKGROUND: Technology-related research on people with dementia and their carers often aims to enable people to remain living at home for longer and prevent unnecessary hospital admissions. To develop person-centered, effective, and ethical research, patient and public involvement (PPI) is necessary, although it may be perceived as more difficult with this cohort. With recent and rapid expansions in health and care-related technology, this review explored how and with what impact collaborations between researchers and stakeholders such as people with dementia and their carers have taken place.
OBJECTIVE: This review aims to describe approaches to PPI used to date in technology-related dementia research, along with the barriers and facilitators and impact of PPI in this area.
METHODS: A scoping review of literature related to dementia, technology, and PPI was conducted using MEDLINE, PsycINFO, Embase, and CINAHL. Papers were screened for inclusion by 2 authors. Data were then extracted using a predesigned data extraction table by the same 2 authors. A third author supported the resolution of any conflicts at each stage. Barriers to and facilitators of undertaking PPI were then examined and themed.
RESULTS: The search yielded 1694 papers, with 31 (1.83%) being analyzed after screening. Most (21/31, 68%) did not make clear distinctions between activities undertaken as PPI and those undertaken by research participants, and as such, their involvement did not fit easily into the National Institute for Health and Care Research definition of PPI. Most of this mixed involvement focused on reviewing or evaluating technology prototypes. A range of approaches were described, most typically using focus groups or co-design workshops. In total, 29% (9/31) described involvement at multiple stages throughout the research cycle, sometimes with evidence of sharing decision-making power. Some (23/31, 74%) commented on barriers to or facilitators of effective PPI. The challenges identified often regarded issues of working with people with significant cognitive impairments and pressures on time and resources. Where reported, the impact of PPI was largely reported as positive, including the experiences for patient and public partners, the impact on research quality, and the learning experience it provided for researchers. Only 4 (13%) papers used formal methods for evaluating impact.
CONCLUSIONS: Researchers often involve people with dementia and other stakeholders in technology research. At present, involvement is often limited in scope despite aspirations for high levels of involvement and partnership working. Involving people with dementia, their carers, and other stakeholders can have a positive impact on research, patient and public partners, and researchers. Wider reporting of methods and facilitative strategies along with more formalized methods for recording and reporting on meaningful impact would be helpful so that all those involved-researchers, patients, and other stakeholders-can learn how we can best conduct research together.