Department of Biomedical Informatics and Medical Education, University of Washington School of Medicine, Box 358047, Seattle, WA 98109, United States.
Department of Rehabilitation Medicine, University of Washington School of Medicine, UW Health Sciences Building, Box 356490, Seattle, WA 98195, United States.
J Biomed Inform. 2024 Sep;157:104691. doi: 10.1016/j.jbi.2024.104691. Epub 2024 Jul 15.
Persons with cognitive impairment may experience difficulties with language and cognition that interfere with their ability to communicate about health-related decision making.
We developed a visual elicitation technique to facilitate conversations about preferences concerning potential future supportive care needs and explored the utility of this technique in a qualitative interview study.
We conducted 15 online interviews with persons with mild cognitive impairment and mild to moderate dementia, using storytelling and a virtual tool designed to facilitate discussion about preferences for supportive care. Interviews were transcribed verbatim and analyzed using an inductive qualitative data analysis method. We report our findings with respect to several main themes. First, we considered participants' perspectives on supportive care. Next, we examined the utility of the tool for engaging participants in conversation through two themes: cognitive and communicative processes exhibited by participants; and dialogic interactions between the interviewer and the participant.
With respect to participants' perspectives on supportive care, common themes included considerations relating to informal caregivers such as availability and burden, and the quality of care options such as paid caregivers. Other themes, such as the importance of making decisions as a family, considerations related to facing these challenges on one's own, and the fluid nature of decision making, also emerged. Common communicative processes included not being responsive to the question and unclear responses. Common cognitive processes included uncertainty and introspection, or self-awareness, of one's cognitive abilities. Last, we examined dialogic interactions between the participant and the interviewer to better understand engagement with the tool. The interviewer was active in using the visualization tool to facilitate the conversation, and participants engaged with the interface to varying degrees. Some participants expressed greater agency and involvement through suggesting images, elaborating on their or the interviewer's comments, and suggesting icon labels.
This article presents a visual method to engage older adults with cognitive impairment in active dialogue about complex decisions. Though designed for a research setting, the diverse communication and participant-interviewer interaction patterns observed in this study suggest that the tool might be adapted for use in clinical or community settings.
认知障碍者可能在语言和认知方面存在困难，从而影响他们沟通与健康相关的决策能力。
我们开发了一种视觉启发技术，以促进有关潜在未来支持性护理需求的偏好的对话，并在定性访谈研究中探索了该技术的效用。
我们对 15 名轻度认知障碍和轻度至中度痴呆患者进行了在线访谈，使用讲故事和设计的虚拟工具来促进对支持性护理偏好的讨论。访谈内容逐字转录，并使用归纳定性数据分析方法进行分析。我们报告了与几个主要主题相关的发现。首先，我们考虑了参与者对支持性护理的看法。其次，我们通过两个主题检验了工具在使参与者参与对话方面的效用：参与者表现出的认知和交流过程；访谈者和参与者之间的对话互动。
就参与者对支持性护理的看法而言，常见主题包括对诸如可用性和负担等非正式照顾者的考虑，以及对诸如付费照顾者等护理选择的质量的考虑。其他主题，例如作为一个家庭做出决策的重要性，独自面对这些挑战的考虑因素，以及决策的流动性，也出现了。常见的交流过程包括对问题没有反应和回答不清楚。常见的认知过程包括对自己认知能力的不确定性和内省，或自我意识。最后，我们检查了参与者和访谈者之间的对话互动，以更好地理解对工具的参与。访谈者积极使用可视化工具来促进对话，而参与者则在不同程度上参与了界面。一些参与者通过提出图像、详细阐述他们自己或访谈者的评论以及提出图标标签，表现出更大的自主性和参与度。
本文提出了一种视觉方法，使认知障碍的老年人能够积极参与关于复杂决策的对话。尽管该方法是为研究环境设计的，但在这项研究中观察到的多样化的沟通和参与者-访谈者互动模式表明，该工具可以适应在临床或社区环境中的使用。
