Doctoral Dissertation Research: Experts of Experience: Incorporating Lay Expertise into Scientific Knowledge and Practice

一种“老龄化危机”的论调席卷了美国，描绘了越来越多的老年人没有人照顾他们的情况。由于65岁以上的人口预计将在未来25年翻一番，使总人数达到每5个人中就有一个人，需要护理的人将超过那些能够提供护理的人的能力。政策制定者和管理人员经常将家庭成员的专业知识作为解决这一护理挑战的一部分，但需要进行社会科学分析，以了解这种转变对个人和社会意味着什么。这项由科学、技术和社会计划资助的论文研究试图将家庭护理作为一种新兴的专业知识类别在美国进行调查。政策和生物医学专业人员正在招募阿尔茨海默病患者的照顾者担任医疗保健方面的“专家”；这种招聘取决于对照顾者的专业经验的认可。这项拟议的研究调查了这一非专业专家队伍的崛起。它调查了阿尔茨海默氏症护理中非专业知识的构成，以及扩大可能被称为“护理专家”的圈子所产生的社会和政治影响，特别是在医疗专业(这一职业历来控制着其队伍的进入)。为了探索这些问题，将使用包括参与者观察、访谈和语篇分析在内的多方法研究设计。拟议的研究将为转向非专业专家作为一种政策解决方案提供实证分析。它将在几个学科中产生更广泛的影响：专业知识的社会科学分析、科学知识社会学、公共政策和传播学研究。研究成果将以多种形式和场所传播：在讲习班和会议上发表的论文；在同行评议的期刊上发表的论文和研究文章，特别是那些促进跨学科工作的期刊；以及面向学术读者的民族志、书籍长度的专著。此外，研究人员致力于将研究结果带给那些最直接受到影响的人：阿尔茨海默氏症患者、他们的家庭照顾者和生物医学提供者。这位研究人员将与一家全国公认的阿尔茨海默病中心的工作人员合作，开发广泛分发的材料。研究将在大众媒体上传播，如报纸和流行杂志文章、政策白皮书和面向大众受众的一本书。

A "crisis of aging" discourse pervades the U.S., portraying a growing population of elderly with no one to care for them. As the number of people over the age of 65 is projected to double in the next 25 years, bringing the total number to one in every five people, those who need care will exceed the capacity of those who can provide it. Policymakers and administrators often point to the expertise of family members as part of the solution to this care challenge, but social scientific analysis is needed to understand what this shift may mean for individuals and society.This dissertation research, funded by the Science, Technology & Society Program, seeks to examine family care giving as an emerging category of expertise in the United States. Policy and biomedical professionals are recruiting caregivers of people who live with Alzheimer's disease to a role of "expert" in medical care; such recruitment hinges on the recognition of caregivers' experience as specialized. The proposed research investigates the rise of this cadre of lay experts. It investigates what constitutes lay expertise within Alzheimer's care-giving as well as the social and political effects of widening the circle of what might be called "care-giving experts", especially within the medical profession (a profession that has historically controlled access to its ranks). To explore these questions, a multi-method research design that includes participant observation, interviews, and discourse analysis will be used. The proposed research will provide empirical analysis of the turn to lay experts as a policy solution. It will have broader impact in several disciplines: social science analyses of expertise, sociology of scientific knowledge, public policy, and communication studies. Research findings will be disseminated in multiple forms and venues: papers presented at workshops and conferences; essays and research articles in peer-reviewed journals, especially those that promote interdisciplinary work; and an ethnographic, book-length monograph for a scholarly audience. In addition, the researcher is dedicated to bringing the findings of the research to those whom it affects most directly: people who live with Alzheimer's, their family caregivers, and biomedical providers. The researcher will work with the staff of a nationally recognized Alzheimer's disease center to develop materials for broad distribution. Research will be disseminated in popular media, such as newspaper and popular magazine articles, policy white papers, and a book for a popular audience.