[Participation in health services research : The development of a preliminary framework for joint research involving people living with dementia, relatives and various professional groups].

Background: 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.

Objective: The aim of this study is to develop a preliminary framework for joint research.

Material and methods: 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.

Results: 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.

Conclusion: 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.