Beresford-Dent Jules, Sprange Kirsty, Mountain Gail, Mason Clare, Wright Jessica, Craig Claire, Birt Linda
Centre for Applied Dementia Research, 1905University of Bradford, Bradford, UK.
Nottingham Clinical Trials Unit, 6123University of Nottingham, Nottingham, UK.
Dementia (London). 2022 Aug;21(6):1987-2003. doi: 10.1177/14713012221106816. Epub 2022 Jun 7.
The involvement of people with a diagnosis of dementia in patient and public involvement and engagement (PPIE) in research is an emerging field in the delivery of studies. Researchers need to understand and use the learning derived from various projects so that this growing body of knowledge can be applied in future research.
To embed PPIE throughout a randomised controlled trial of a psychosocial intervention called Journeying through Dementia. We identify and discuss the approaches to involvement that worked well and those where improvements were indicated.
The Guidance for Reporting Involvement of Patients and the Public Short Form (GRIPP2-SF) is used to describe and critically appraise the approaches taken and the impact of PPIE involvement upon study processes, the study team and those people with dementia and their supporters who acted as advisors.
The involvement of people with a diagnosis of dementia and supporters as study advisors improved the accessibility and relevance of the research for people living with dementia. It also highlighted issues that researchers may have otherwise overlooked. Successful engagement of people with dementia and their supporters in the study was associated with staff skills and particularly use of techniques to scaffold meaningful involvement, as well as participants' memory and cognitive capacity. However, embedding robust and meaningful involvement processes required significant time and resources.
We propose that certain research processes need to be adapted to be accessible and appropriate for people living with dementia. Recruitment of PPIE advisors needs to reflect population diversity. There also needs to be greater parity of voice between people with lived experience of dementia and researchers. These steps will increase the impact of PPIE in research and improve the experience for those who volunteer to be PPIE advisors.
诊断为痴呆症的患者参与研究中的患者及公众参与和介入（PPIE）是研究开展过程中的一个新兴领域。研究人员需要理解并运用从各个项目中获得的经验教训，以便将这一不断增长的知识体系应用于未来的研究。
在一项名为“穿越痴呆症之旅”的社会心理干预随机对照试验中全面融入PPIE。我们识别并讨论了效果良好的参与方式以及有待改进的方面。
采用患者及公众参与报告指南简表（GRIPP2-SF）来描述和批判性评价所采取的方法以及PPIE参与对研究过程、研究团队以及作为顾问的痴呆症患者及其支持者的影响。
诊断为痴呆症的患者及其支持者作为研究顾问的参与，提高了该研究对痴呆症患者的可及性和相关性。这也凸显了研究人员可能原本会忽略的问题。痴呆症患者及其支持者成功参与该研究与工作人员的技能，特别是运用有助于进行有意义参与的技巧有关，也与参与者的记忆和认知能力有关。然而，要全面融入稳健且有意义的参与过程需要大量时间和资源。
我们建议，某些研究过程需要进行调整，以使其对痴呆症患者具有可及性且合适。PPIE顾问的招募需要反映人群的多样性。痴呆症患者的实际经验者与研究人员之间也需要有更大程度的平等话语权。这些举措将增加PPIE在研究中的影响力，并改善那些志愿成为PPIE顾问者的体验。
