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，描绘了无人照顾的老年人口不断增长的情况。由于65岁以上的人口数量预计在未来25年内将翻一番，使总人数达到五分之一，需要护理的人将超过能够提供护理的人的能力。政策制定者和管理人员经常指出，家庭成员的专业知识是解决这一护理挑战的一部分，但是需要社会科学分析来理解这种转变对个人和社会意味着什么。2本论文研究由科学技术&社会计划资助，旨在研究家庭护理在美国作为一种新兴的专业类别。政策和生物医学专业人员正在招聘阿尔茨海默病患者的护理人员担任医疗护理“专家”;这种招聘取决于承认护理人员的经验是专业的。拟议中的研究调查了这批外行专家的崛起。它调查了阿尔茨海默氏症护理中的外行专业知识，以及扩大所谓的“护理专家”圈子的社会和政治影响，特别是在医学界（一个在历史上控制进入其行列的职业）。为了探讨这些问题，将采用多方法研究设计，包括参与观察，访谈和话语分析。拟议的研究将提供实证分析的转向外行专家作为一种政策解决方案。它将在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，公共政策和传播研究。研究结果将以多种形式和途径传播：在讲习班和会议上提出的论文;在同行评审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;以及为学术界读者编写的一本书长的人种学专著。此外，研究人员致力于将研究结果带给最直接影响的人：阿尔茨海默氏症患者，他们的家庭护理人员和生物医学提供者。研究人员将与一个国家认可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。将通过大众媒体传播研究成果，如报纸和大众杂志文章、政策白色文件和面向大众的书籍。

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.