Hoffmann-Hoffrichter Anna Louisa, Manietta Christina, Rommerskirch-Manietta Mike, Roes Martina
Deutsches Zentrum für Neurodegenerative Erkrankungen e. V., Stockumer Str. 12, 58453, Witten, Deutschland.
Witten/Herdecke University (UW/H), Faculty of Health, Department of Nursing Science, Alfred-Herrhausen-Straße 50, 58448, Witten, Deutschland.
Z Gerontol Geriatr. 2025 Sep 6. doi: 10.1007/s00391-025-02494-6.
Models that actively involve people living with dementia and their relatives as well as experts from various healthcare settings in research have not yet been implemented in the context of health services research in the German language. Such models are necessary to actively involve the perspectives of "co-researchers" and address topics pertaining to the everyday lives of people living with dementia and their relatives as well as individuals working in healthcare practice.
The aim of this study is to develop a preliminary framework for joint research.
The procedure used in this research features a participatory approach involving stakeholders recruited from different groups of people, including people living with dementia, their relatives and experts from long-term and acute inpatient settings. A participatory research model was translated into German and discussed, debated and agreed upon in virtual meetings with the stakeholders. The results were discussed in a workshop with the goal of determining the types of support that were considered necessary for "co-researchers". All meetings were documented in protocols that were analyzed both deductively and inductively.
A total of 13 stakeholders participated in this project. The preliminary framework for joint research contains basic principles, activities and support requirements for joint research.
In addition to experts from various healthcare settings, people living with dementia and their relatives both want to and can be actively involved in research. To refine the preliminary framework, it continues to be tested and developed in the context of participatory research projects at the German Center for Neurodegenerative Diseases (DZNE) site Witten.
在德语区的卫生服务研究背景下，尚未实施将痴呆症患者及其亲属以及来自各种医疗环境的专家积极纳入研究的模式。这种模式对于积极纳入“共同研究者”的观点并解决与痴呆症患者及其亲属以及医疗实践工作者日常生活相关的主题是必要的。
本研究的目的是制定一个联合研究的初步框架。
本研究采用的程序具有参与性方法，涉及从不同人群中招募的利益相关者，包括痴呆症患者、他们的亲属以及长期和急性住院环境的专家。一个参与性研究模式被翻译成德语，并在与利益相关者的虚拟会议中进行了讨论、辩论并达成一致。结果在一个研讨会上进行了讨论，目的是确定被认为对“共同研究者”必要的支持类型。所有会议都记录在协议中，并进行了演绎和归纳分析。
共有13名利益相关者参与了该项目。联合研究的初步框架包含联合研究的基本原则、活动和支持要求。
除了来自各种医疗环境的专家外，痴呆症患者及其亲属既希望也能够积极参与研究。为了完善初步框架，它将在德国神经退行性疾病中心（DZNE）维滕站点的参与性研究项目中继续进行测试和开发。
