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

University Of Chicago, Chicago IL

Investigators

Abstract

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.