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

一场“老龄化危机”的讨论弥漫在美国，描绘了越来越多的老年人没有人照顾他们。65岁以上老人的数量预计将在未来25年内翻一番，达到每5人中就有1人，需要照顾的人将超过能够提供照顾的人的能力。决策者和管理者经常指出，家庭成员的专业知识是解决这一护理挑战的一部分，但需要社会科学分析来理解这种转变对个人和社会可能意味着什么。本论文研究由科学、技术与社会计划资助，旨在检视家庭照护在美国作为一种新兴的专业范畴。政策和生物医学专业人员正在招募阿尔茨海默病患者的护理人员担任医疗保健“专家”的角色；这种招聘取决于对护理人员专业经验的认可。拟议的研究调查了这群外行专家的崛起。它调查了阿尔茨海默氏症护理中外行专业知识的构成，以及扩大所谓“护理专家”圈子的社会和政治影响，特别是在医疗行业（历史上一直控制着进入其行列的职业）。为了探讨这些问题，将采用多方法研究设计，包括参与者观察，访谈和话语分析。提出的研究将提供实证分析转向外行专家作为政策解决方案。它将对几个学科产生更广泛的影响：专业知识的社会科学分析、科学知识的社会学、公共政策和传播学。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；发表在同行评议期刊上的论文和研究文章，特别是那些促进跨学科工作的论文和研究文章；也是一本为学术读者准备的人种学专著。此外，研究人员致力于将研究结果带给那些最直接影响的人：阿尔茨海默病患者、他们的家庭照顾者和生物医学提供者。研究人员将与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。研究结果将在大众媒体上传播，如报纸和大众杂志文章、政策白皮书和面向大众读者的书籍。

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.