Ditton Annabel, Bunt Deb, Berry Peter
University of Exeter, Exeter, UK.
, Suffolk, UK.
Res Involv Engagem. 2025 Jan 27;11(1):8. doi: 10.1186/s40900-025-00678-3.
Involving people living with dementia in the development of research through PPIE is the gold standard for ethical research. Established PPIE groups have been set up throughout the UK to provide people with dementia opportunities to have their voice heard. However, accessing these groups as a doctoral researcher can be difficult, and little guidance is given on how to make the process successful. Additionally, many people living with dementia are unaware such groups exist, and thus don't benefit from getting involved. In response, this paper summarises the PPIE process taken to develop a piece of doctoral research. Uniquely, this project involved collaboration with an individual living with dementia who was previously unfamiliar with research practices, and their friend. In this paper we present our shared experiences of the PPIE process, the benefits we all received, and the challenges we encountered. We combined a practical PPIE framework with an appreciative research approach to reflect on concepts such as ethical dilemmas and how these impact on participation. We conclude by offering practical tips on how to create a meaningful PPIE process to encourage other doctoral researchers to collaborate with people living with dementia in their research.
通过患者及公众参与和参与式研究（PPIE）让痴呆症患者参与研究的开展是伦理研究的黄金标准。英国各地已成立了成熟的PPIE团体，为痴呆症患者提供发声的机会。然而，作为一名博士研究生，要加入这些团体可能很困难，而且对于如何使这个过程取得成功，几乎没有给出指导。此外，许多痴呆症患者并不知道有这样的团体存在，因此无法从参与中受益。作为回应，本文总结了开展一项博士研究时所采用的PPIE过程。独特的是，这个项目涉及与一位此前不熟悉研究实践的痴呆症患者及其朋友的合作。在本文中，我们展示了我们在PPIE过程中的共同经历、我们所获得的益处以及我们遇到的挑战。我们将一个实用的PPIE框架与一种赏识性研究方法相结合，以反思诸如伦理困境以及这些困境如何影响参与等概念。我们通过提供关于如何创建一个有意义的PPIE过程的实用建议来得出结论，以鼓励其他博士研究生在其研究中与痴呆症患者合作。
