Seidel Katja, Winiarski Claudia, Thyrian Jochen René, Haberstroh Julia
Department of Psychology, Psychological Aging Research, Faculty V: School of Life Sciences, University of Siegen, Siegen, Germany.
German Center for Neurodegenerative Diseases (DZNE), Greifswald, Germany.
Front Dement. 2024 Aug 7;3:1421541. doi: 10.3389/frdem.2024.1421541. eCollection 2024.
The German National Dementia Strategy aims to engage people with dementia in research projects. However, the effects of such research participation on experience and behavior have been insufficiently explored. This study aimed to investigate the psychological effect of research participation on people living with dementia. In a qualitative, exploratory approach, guideline-based interviews were conducted with four persons with dementia who had served as co-researchers on an advisory board in a health services research study for 8 months at that time. The analysis revealed predominantly positive effects of research participation at all levels of experience and behavior. Most effects were reported by the co-researchers on a cognitive level. Both the perception of being competent and of making a positive contribution to oneself and/or others are key effects of research participation. The main effects on an emotional level were joy and wellbeing and on a behavioral level were positive social contacts and social communication. Sadness and insecurity represent the sole negative effects. Nuanced focal points of effects among the individual interviews were found. The results align with existing research highlighting the positive effects of participation on people with dementia. Through advancing an interdisciplinary perspective on their research involvement, we advocate for heightened attention to this topic within the realm of psychology.
德国国家痴呆症战略旨在让痴呆症患者参与研究项目。然而，这种研究参与对患者体验和行为的影响尚未得到充分探索。本研究旨在调查研究参与对痴呆症患者的心理影响。采用定性、探索性方法，对四名痴呆症患者进行了基于指南的访谈，当时他们在一项卫生服务研究中担任咨询委员会的共同研究人员长达8个月。分析表明，研究参与在体验和行为的各个层面上主要产生了积极影响。共同研究人员大多在认知层面报告了这些影响。认为自己有能力并对自己和/或他人做出积极贡献的认知是研究参与的关键影响。在情感层面上，主要影响是喜悦和幸福，在行为层面上，主要影响是积极的社会接触和社交沟通。悲伤和不安全感是仅有的负面影响。在个别访谈中发现了影响的细微焦点。研究结果与现有研究一致，这些研究强调了参与对痴呆症患者的积极影响。通过推进对他们研究参与的跨学科视角，我们主张在心理学领域更加关注这一话题。
