CRII: CHS: Innovating Consumer Health Information Technology Designs for Informal Caregiving: From Individual Caregivers to Loosely Coupled Informal Teams

随着患有慢性病的人数的增加，家庭成员和朋友提供的家庭照顾的负担也在增加。通常，许多人--亲人和远方的家人、朋友和邻居、临床医生--为特定的患者充当一个非正式的、结构松散的护理人员团队，尽管医院的专业护理团队已经得到了充分的研究，但人们对这些松散的家庭护理团队如何沟通和分享信息以提供良好的护理知之甚少。为了建立这种理解，并为可能支持这些团队的消费者健康信息技术的设计提供信息，研究人员将观察、采访和调查阿尔茨海默病患者家中的照顾者。问题将集中在团队合作的各个方面，包括护理者扮演的不同角色以及他们如何随着时间的推移而改变；他们用来查找、保存和共享信息的工具和方法；以及他们作为个人和作为群体做出护理决策的方式。研究人员将利用这些数据，从专业护理团队的现有模式和团队合作的一般模式出发，开发以家庭护理活动为基础的非正式团队合作的新模式；然后，他们将与照顾者和临床医生合作，制定设计要求和工具的想法，以帮助护理团队解决模型确定的问题。这些模型和设计理念将是一系列更长研究的第一步，这些研究将适用于许多不同的健康状况，并不仅支持面对面的护理，也支持在线和虚拟的护理。研究人员还将努力通过接触照顾者支持团体和老年中心，以及通过经常提供研究进展最新情况的公共博客，让人们广泛了解他们的发现。作为工作的一部分，首席研究员将培训两名新的博士生来进行采访、观察、分析和设计工作。研究人员将与威斯康星州阿尔茨海默病研究中心的合作伙伴和当地一家退伍军人事务医院合作，招募20名阿尔茨海默病或相关痴呆症患者，以及每名患者护理团队的几名成员，包括他们的主要照顾者。使用改进的危急事件技术，由两名研究人员(一名领导，一名笔记人员)组成的团队将在患者家中进行访谈和调查，以获得舒适度和支持对护理环境的观察，特别是围绕护理团队使用的人工制品的识别和讨论。对数据的分析将以分布式认知理论和医疗保健系统中现有的两个社会技术工作模型--患者安全系统工程倡议和患者工作系统模型为指导，使用基于这些模型的编码系统，但允许识别和纳入新的主题和代码。然后，这些分析将使用认知网络分析方法来表示，该方法融合了社会网络和话语分析的元素，以捕捉出现的沟通、信息管理和认知工作的模式。将根据模型开发设计要求和低保真原型，然后与包括护理人员和护理专家(包括老年医生、护士和社会工作者)在内的几个焦点小组进行讨论，以确定原型设计可能改善(或导致)的潜在问题。

As the number of people living with chronic conditions increases, so does the burden of home caregiving provided by family members and friends. Often, a number of people -- close and distant family, friends and neighbors, clinicians -- act as an informal, loosely structured team of caregivers for a given patient, and though professional care teams in hospitals are well-studied, much less is known about how these loosely structured home caregiving teams communicate and share information in order to provide good care. To build this understanding, and to inform the design of consumer health information technologies that might support these teams, the researchers will observe, interview, and survey caregivers in Alzheimer's Disease patients' homes. Questions will focus on aspects of teamwork including the different roles caregivers play and how they change over time; the tools and methods they use to find, save, and share information; and the ways they make care decisions both as individuals and as groups. Using the data, and starting from existing models of professional caregiving teams and general models of teamwork, the researchers will develop new models of informal teamwork that are grounded in the activities of home caregiving; then, working with caregivers and clinicians, they will develop design requirements and ideas for tools to help caregiving teams address problems identified by the models. These models and design ideas will be a first step in a longer line of research that will apply to many different health conditions, and support caregiving not just in person but online and virtually. The researchers will also work to make their findings widely available, through outreach to caregiver support groups and senior centers and through a public blog that will provide frequent updates on the progress of the research. As part of the work, the lead researcher will train two new PhD students to conduct the interviews, observations, analysis, and design work. Working with partners at the Wisconsin Alzheimer's Disease Research Center and a local Veteran's Affairs Hospital, the researchers will recruit 20 patients with Alzheimer's Disease or related dementias and several members of each patient's caregiving team, including their primary caregiver. Using a modified critical incident technique, teams of two researchers (one leader, one note-taker) will conduct interviews and surveys at patients' homes both for comfort and to support observation of the caregiving environment, particularly around the identification and discussion of artifacts used by the caregiving team. The analysis of the data will be guided by both the theory of distributed cognition and by two existing models of socio-technical work in healthcare systems, the Systems Engineering Initiative for Patient Safety and the Patient Work System model, using a coding system based on those models but allowing for the identification and inclusion of new themes and codes. These analyses will then be represented using the Epistemic Network Analysis method, which blends elements of social network and discourse analysis, to capture the patterns of communication, information management, and cognitive work that emerge. Design requirements and low-fidelity prototypes will be developed based on the models, then discussed with several focus groups that include both caregivers and experts in caregiving, including geriatricians, nurses, and social workers to identify the potential problems that might be ameliorated (or caused) by the prototype designs.