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

随着慢性病患者人数的增加，家庭成员和朋友提供的家庭护理负担也在增加。通常，许多人——亲密的和疏远的家人、朋友和邻居、临床医生——作为一个非正式的、结构松散的护理团队来照顾一个特定的病人，尽管对医院的专业护理团队进行了充分的研究，但对于这些结构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，我们知之甚少。为了建立这种理解，并告知消费者健康信息技术的设计，这些技术可能支持这些团队，研究人员将观察、采访和调查阿尔茨海默病患者家中的护理人员。问题将集中在团队合作的各个方面，包括照顾者扮演的不同角色以及他们如何随着时间的推移而变化；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群体做出护理决定的方式。利用这些数据，从现有的专业照护团队模型和一般的团队合作模型出发，研究人员将开发以家庭照护活动为基础的非正式团队合作新模型；然后，与护理人员和临床医生合作，他们将开发工具的设计要求和想法，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更长的研究路线的第一步，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，而且支持在线和虚拟的护理。研究人员还将通过与护理人员支持团体和老年中心的联系，以及通过一个经常提供研究进展更新的公共博客，努力使他们的发现广泛传播。作为工作的一部分，首席研究员将培训两名新的博士生进行访谈、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和当地一家退伍军人事务医院的合作伙伴合作，招募20名患有阿尔茨海默病或相关痴呆症的患者，以及每位患者的护理团队的几名成员，包括他们的主要护理人员。使用改进的关键事件技术，由两名研究人员组成的小组（一名领导，一名记录员）将在患者家中进行访谈和调查，以使患者感到舒适，并支持对护理环境的观察，特别是在护理团队使用的人工制品的识别和讨论方面。数据分析将以分布式认知理论和医疗保健系统中社会技术工作的两个现有模型为指导，即患者安全系统工程倡议和患者工作系统模型，使用基于这些模型的编码系统，但允许识别和包含新的主题和代码。然后，这些分析将使用知识网络分析方法来表示，该方法混合了社会网络和话语分析的元素，以捕获出现的通信，信息管理和认知工作的模式。设计要求和低保真原型将基于模型开发，然后与几个焦点小组讨论，包括护理人员和护理专家，包括老年病学家、护士和社会工作者，以确定原型设计可能改善（或引起）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.