Identifying and Defining the Components and Indicators of Participant Direction

Abstract

In this dissertation, I analyzed the design of various programs of participant direction in long-term care in the U.S. programs of participant direction offer the consumer (i.e., individuals with a disability and individuals who are elderly) or surrogate decision maker some level of choice and control over the consumer's long-term care supports and services. I conducted a qualitative documentary analysis using grounded theory methods in order to identify and define the range of components and indicators available in programs of participant direction. I sampled 53 documents from 2004 through 2008 representing multiple disabilities and program funding sources. Findings resulted in the development of a grounded theory of program design and a conceptual framework depicting an ideal type of program and its organization. All programs were found to have two major theoretical constructs, what and how, under which all identified components and indicators could be organized. I identified and defined a total of five components and 28 indicators. Each indicator was represented by one or more continua depicting the range of consumer or surrogate choice and control over the indicator. The findings of this study have implications for improving the rigor of research and development of long-term care policy.