背景:在整个研究过程中纳入利益相关者已获得认可,这是一种可以提高研究质量和影响的方法。利益相关者参与痴呆症护理研究已被确定为国家优先事项,尽管对参与战略及其影响的评估是有限的。在痴呆症护理研究中,利益相关者可以包括痴呆症患者,家庭护理伙伴,以及痴呆症护理方面的健康和社会护理专业人员。成立了利益相关者咨询委员会(SAC),以确定对利益相关者最重要的痴呆症护理研究的优先事项。使用了建设研究能力和促进SAC参与的战略来确定研究优先事项。本研究描述了SAC成员参与研究过程的经验。
方法:为了评估利益相关者的参与度,与SAC成员进行了半结构化访谈,以了解他们对促进参与和建立研究能力的策略的经验和观点。采访被记录下来,转录,并使用归纳和演绎混合方法进行主题分析。向SAC成员提交了调查结果,以确定他们是否认为自己的观点和经验得到了准确代表。SAC批准了此处介绍的最终领域和主题。
结果:与代表每个利益相关者群体的SAC成员进行了访谈(N=11);痴呆症患者(n=2);家庭护理伙伴(n=4),以及痴呆症护理中的健康和社会护理专业人员(n=5)。十个主题被分为四个总体领域:可访问性,议会基础设施,价值观和环境,参与的好处。
结论:这项定性研究的结果是寻求与不同利益相关者团体合作的研究人员的资源,以代表他们在研究中的观点。包括痴呆症患者。此处确定的领域和主题支持将不同的利益相关者纳入研究过程,围绕痴呆症患者的参与和能力建设策略。
让利益相关者参与有关痴呆症护理的研究被认为是开发与痴呆症患者相关的发现的重要方法。家庭护理伙伴,以及痴呆症护理方面的健康和社会专业人员。尽管如此,这种方法并不经常使用,需要更多的信息,关于研究人员如何让利益相关者参与研究过程,以及从利益相关者的角度参与的影响。在本文中,我们描述了一个由利益相关者组成的混合小组如何参与一个项目,以确定痴呆症护理研究的优先事项以及他们对经验的看法.利益相关者咨询委员会(SAC)共同努力发展他们的研究技能,并与他们的社区联系,以确定在痴呆症护理研究领域最重要的研究内容。要了解参与此项目的利益相关者的观点,我们对SAC成员进行了个别访谈。这项研究将帮助研究人员了解他们如何与痴呆症护理的利益相关者合作,以及纳入痴呆症患者的好处。家庭护理伙伴,以及研究过程中的专业利益相关者。
BACKGROUND: The inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research has been identified as a national priority, though evaluation of engagement strategies and their impact has been limited. In dementia care research, stakeholders can include individuals living with dementia, family care partners, and health and social care professionals in dementia care. A Stakeholder Advisory
Council (SAC) was established to identify priorities for dementia care research that are most important to stakeholders. Strategies to build capacity for research and facilitate engagement among the SAC were used to identify the research priorities. This study describes the experiences of SAC members engaged in the research process.
METHODS: To evaluate stakeholder engagement, semi-structured interviews were conducted with members of the SAC to understand their experiences and perspectives on the strategies used to facilitate engagement and build capacity for research. Interviews were recorded, transcribed, and thematically analyzed using a mixed inductive and deductive approach. Findings were presented to members of the SAC to determine whether they felt their perspectives and experiences were accurately represented. Final domains and themes presented here were approved by the SAC.
RESULTS: Interviews (N = 11) were conducted with members of the SAC representing each stakeholder group; persons living with dementia (n = 2); family care partners (n = 4), and health and social care professionals in dementia care (n = 5). Ten themes were categorized into four overarching domains: accessibility,
council infrastructure, values and environment, and benefits of involvement.
CONCLUSIONS: Findings from this qualitative study are a resource for researchers seeking to collaborate with diverse stakeholder groups to represent their perspectives in research, including individuals living with dementia. The domains and themes identified here support the inclusion of diverse stakeholders in the research process, centering engagement and capacity building strategies around individuals living with dementia.
Involving stakeholders in research about dementia care is recognized as an important approach to develop findings that are relevant to individuals living with dementia, family care partners, and health and social professionals in dementia care. Still, this approach is not often used and there is a need for more information about how researchers can engage stakeholders in the research process and the impact of engagement from the perspectives of stakeholders. In this paper, we describe how a mixed group of stakeholders was engaged for a project to identify priorities for dementia care research and their perspectives of the experience.A Stakeholder Advisory
Council (SAC) worked together to develop their skills in research and connected with their communities to determine what is most important to be studied in the field of dementia care research. To understand the perspectives of the stakeholders involved in this project, we conducted individual interviews with members of the SAC.This study will help researchers understand how they can collaborate with stakeholders in dementia care and the benefits of including individuals living with dementia, family care partners, and professional stakeholders in the research process.