College of Information Studies, University of Maryland, College Park, MD, United States.
J Med Internet Res. 2022 Aug 11;24(8):e35072. doi: 10.2196/35072.
Prior research on health information behaviors of people with dementia has primarily focused on examining the types of information exchanged by people with dementia using various web-based platforms. A previous study investigated the information behaviors of people with dementia within a month of their diagnosis. There is an empirical gap in the literature regarding the evolution of health information needs and behaviors of people with dementia as their condition progresses.
Our work primarily investigated the information behaviors of people with dementia who have been living with the condition for several (4 to 26) years. We also aimed to identify their motivations for changing their information behaviors over time. Our primary research questions were as follows: how do people with dementia get informed about their condition, and why do people with dementia seek information about their condition?
We adopted an action research approach by including 2 people with dementia as members of our research team. Collaboratively, we conducted 16 remote 1-hour contextual inquiry sessions with people living with mild to moderate dementia. During the study sessions, the first 40 minutes included semistructured interviews with participants concerning their information behaviors, followed by a 20-minute demonstration of their information-seeking strategies. Data from these interviews were analyzed using a constructivist grounded theory approach.
Participants described their information needs in terms of managing the disrupted physiological, emotional, and social aspects of their lives following a diagnosis of dementia. They used various information behaviors, including active search, ongoing search, monitoring, proxy search, information avoidance, and selective exposure. These information behaviors were not stagnant; however, they were adapted to accommodate the changing circumstances of their dementia and their lives as they worked to re-establish equilibrium to continue to engage in life while living with a degenerative neurological condition.
Our research revealed the motivations, changing abilities, and chosen strategies of people with dementia in their search for information as their condition evolves. This knowledge can be used to develop and improve person-centered information and support services for people with dementia so that they can more easily re-establish equilibrium and continue to engage in life.
先前关于痴呆症患者健康信息行为的研究主要集中在检查痴呆症患者使用各种基于网络的平台交换的信息类型。之前的一项研究调查了痴呆症患者在确诊后一个月内的信息行为。文献中存在一个经验性的空白，即关于随着病情的发展，痴呆症患者健康信息需求和行为的演变。
我们的工作主要调查了患有痴呆症且病情已持续数年（4 至 26 年）的患者的信息行为。我们还旨在确定他们随着时间的推移改变信息行为的动机。我们的主要研究问题如下：痴呆症患者如何了解自己的病情，以及为什么他们会寻求有关自己病情的信息？
我们采用行动研究方法，让 2 名痴呆症患者作为我们研究团队的成员。我们合作进行了 16 次远程 1 小时的情境调查会议，参与者是患有轻度至中度痴呆症的人。在研究会议期间，前 40 分钟包括对参与者信息行为的半结构化访谈，之后是 20 分钟的信息搜索策略演示。使用建构主义扎根理论方法对这些访谈数据进行了分析。
参与者描述了他们的信息需求，包括在诊断为痴呆症后管理生理、情感和社会方面紊乱的需求。他们使用了各种信息行为，包括主动搜索、持续搜索、监测、代理搜索、信息回避和选择性暴露。这些信息行为并非一成不变，而是适应了痴呆症和生活环境的变化，努力重新建立平衡，继续参与生活，同时患有进行性神经疾病。
我们的研究揭示了痴呆症患者在病情演变过程中寻找信息的动机、不断变化的能力和选择的策略。这些知识可用于开发和改进针对痴呆症患者的以患者为中心的信息和支持服务，以便他们更容易重新建立平衡，继续参与生活。
