a Department of Health and Wellbeing , Research Group Innovation of Care of Older Adults, Windesheim University of Applied Sciences , Zwolle , the Netherlands.
b Department of Technology , Research Group IT Innovation in Health Care, Windesheim University of Applied Sciences , Zwolle , the Netherlands.
Disabil Rehabil. 2018 Jun;40(12):1410-1420. doi: 10.1080/09638288.2017.1298162. Epub 2017 Mar 12.
The aim of this study was at gaining insight into the participatory design approach of involving people with dementia in the development of the DecideGuide, an interactive web tool facilitating shared decision-making in their care networks.
An explanatory case study design was used when developing the DecideGuide. A secondary analysis focused on the data gathered from the participating people with dementia during the development stages: semi-structured interviews (n = 23), four focus group interviews (n = 18), usability tests (n = 3), and a field study (n = 4). Content analysis was applied to the data.
Four themes showed to be important regarding the participation experiences of involving people with dementia in research: valuable feedback on content and design of the DecideGuide, motivation to participate, perspectives of people with dementia and others about distress related to involvement, and time investment.
People with dementia can give essential feedback and, therefore, their contribution is useful and valuable. Meaningful participation of people with dementia takes time that should be taken into account. It is important for people with dementia to be able to reciprocate the efforts others make and to feel of significance to others. Implications for Rehabilitation People with dementia can contribute meaningfully to the content and design and their perspective is essential for developing useful and user-friendly tools. Participating in research activities may contribute to social inclusion, empowerment, and quality of life of people with dementia.
本研究旨在深入了解参与式设计方法，即让痴呆症患者参与到 DecideGuide 的开发中，该工具是一种促进其照护网络中共同决策的互动网络工具。
在开发 DecideGuide 时使用了解释性案例研究设计。对参与者在开发阶段收集的数据进行了二次分析：半结构化访谈（n=23）、4 次焦点小组访谈（n=18）、可用性测试（n=3）和实地研究（n=4）。对数据进行了内容分析。
有四个主题显示了让痴呆症患者参与研究的重要性：对 DecideGuide 的内容和设计的有价值的反馈、参与的动机、痴呆症患者和其他人对参与相关痛苦的看法，以及时间投入。
痴呆症患者可以提供重要的反馈，因此他们的贡献是有用和有价值的。让痴呆症患者有意义地参与需要时间，这一点很重要。让痴呆症患者能够回报他人的努力，并感到对他人有意义也很重要。
痴呆症患者可以为内容和设计做出有意义的贡献，他们的观点对于开发有用且用户友好的工具至关重要。参与研究活动可以促进痴呆症患者的社会包容、赋权和生活质量。
