Research Group Innovating with Older Adults,Centre of Expertise in Health Care and Social Work,Windesheim University of Applied Sciences,8000 GB,Zwolle,the Netherlands.
Research Centre Innovations in Care,Rotterdam University of Applied Sciences,3001 HA,Rotterdam,the Netherlands.
Int Psychogeriatr. 2018 Jun;30(6):843-857. doi: 10.1017/S1041610216001381. Epub 2016 Sep 9.
ABSTRACTBackground:Decision making is an important part of managing one's life with dementia. Shared decision making is the preferred way of involving people in decisions. Our study aimed to describe the challenges of shared decision making in dementia care networks.
A multi-perspective qualitative study using face-to-face interviews with 113 respondents in 23 care networks in the Netherlands consisting of 23 people with dementia, 44 of their informal caregivers, and 46 of their professional caregivers. The interview guide addressed the decision topics, who were involved in the decision making and their contributions to the decision making. We used content analysis to delineate categories and themes.
The themes and categories that emerged are: (1) adapting to a situation of diminishing independence, which includes the continuous changes in the care network, resulting in shifting decision-making roles and the need for anticipating future decisions; and (2) tensions in network interactions which result from different perspectives and interests and which require reaching agreement about what constitutes a problem by exchanging information in the care network.
The challenges in dementia care networks relate to all dimensions of social health. They have implications for a model of shared decision making in dementia care networks. Such a model requires flexibility regarding changing capabilities to preserve the autonomy of the person with dementia. It needs working towards a shared view about what constitutes a problem in the situation. It asks for professionals to advocate for the involvement of people with dementia by helping them participate in ways that strengthen their remaining capacities.
摘要背景：决策是管理痴呆症患者生活的重要组成部分。共同决策是让人们参与决策的首选方式。我们的研究旨在描述痴呆症护理网络中共同决策面临的挑战。方法：一项多视角的定性研究，使用面对面访谈，对荷兰 23 个护理网络中的 113 名受访者进行访谈，这些网络包括 23 名痴呆症患者、44 名非专业护理者和 46 名专业护理者。访谈指南涉及决策主题、谁参与了决策以及他们对决策的贡献。我们使用内容分析来划定类别和主题。结果：出现的主题和类别包括：（1）适应独立性下降的情况，包括护理网络的持续变化，导致决策角色的转变和需要预测未来的决策；（2）网络互动中的紧张关系，源于不同的观点和利益，需要通过在护理网络中交换信息来就什么构成问题达成一致。结论：痴呆症护理网络中的挑战涉及社会健康的所有方面。它们对痴呆症护理网络中共同决策模型有影响。这样的模型需要在不断变化的能力方面具有灵活性，以保护痴呆症患者的自主权。它需要努力就情况中什么构成问题达成共识。它要求专业人员通过帮助他们以增强其剩余能力的方式参与来倡导让痴呆症患者参与进来。
