The conceptualization and measurement of quality of life: Implications for program planning and evaluation in the field of intellectual disabilities

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Abstract

The concept of quality of life (QOL) is increasingly being used in the field of intellectual disabilities as a conceptual and measurement framework for program planning and evaluation. This article describes the development of a QOL conceptual and measurement framework, and summarizes how this framework is currently being used both nationally and internationally to assess and report personal QOL-related outcomes, to guide quality improvement strategies, and to evaluate the effectiveness of those strategies. Implications of such use are discussed, including those related to understanding mental models, developing internal data systems, supporting organization change, and building on current public policies. The article concludes with reference to the evolving nature of the QOL concept and the impact of this on model development and transdisciplinary research.

Introduction

Historically, the concept of quality of life (QOL) has been used in the field of intellectual and closely related developmental disabilities (IDD) primarily as a sensitizing notion that during the 1980s and 1990s grounded and guided what an individual valued and desired. During the past decade, its role has expanded to include: (a) a conceptual framework for assessing personal outcomes; (b) a social construct that guides program practices and quality improvement (QI) strategies; and (c) a criterion for assessing the effectiveness of those practices and strategies. As such, it has become an agent for social change that at its core makes us think differently about persons with IDD and how we might reform policy and practices to enhance QOL-related personal outcomes. Basic to that process is a desire among stakeholders for quality services and personal outcomes; a focus on providing individualized supports within inclusive (i.e. community) environments; an emphasis on key performance indicators and evidence-based practices; and the use of best practices regarding skill training, assistive technology, and environmental accommodation (Schalock, Gardner, & Bradley, 2007).

Despite the appeal of the QOL concept in the field of IDD, it has yet to be fully integrated into current policy and practices due to a number of issues related to its conceptualization, measurement, and application. In addition, the ecological and consumer empowerment emphasis of the QOL movement is frequently at odds with models of disablement that focus on defectology (Devlieger, Rusch, & Pfeiffer, 2003) and models of care that focus on control, power, health, safety, and categorization (De Walle, van Loon, van Hove, & Schalock, 2005).

The major purpose of this article is to discuss how QOL investigators in the field of IDD are addressing these issues. Specifically, in subsequent sections, we summarize the development of a QOL conceptual and measurement framework and then explain how this framework is currently being used both nationally and internationally to: implement QOL-related program practices, assess and report personal outcomes, guide QI strategies, and evaluate the effectiveness of those practices and strategies. The article is primarily relevant to: program service managers who are striving to make organization conditions more congruent with the mental model that already governs ‘support thinking’; to professional in their efforts to implement QOL-focused program practices and individualized supports; and to researchers who can use the conceptual and measurement frameworks to guide their research and evaluation studies. The article also reflects the emerging transdisciplinary approach to research that involves researchers and practitioners working jointly in the production of both scientific understanding and societal application effects (Walter, Helgenberger, Wiek, & Scholz, 2007).

Although the article is based primarily on the work of the authors, details about parallel developments in individual-referenced QOL research and application can be found in the published work of Cummins (1997), Cummins (2004), Perry and Felce (2005) and Wehmeyer and Schwartz (1998). Parallel developments in the field of family QOL can be found in the published work of Brown, Anand, Fung, Isaacs, and Braum (2003), Poston et al. (2003), and Summers et al. (2005).

Section snippets

Conceptual framework

The conceptual QOL conceptual framework presented in Table 1 has three key components: factors, domains, and indicators. This framework has been developed by the authors over the last two decades using three sequential steps (Shoemaker, Tankard, & Larorsa, 2004): observing and describing the phenomenon, concept mapping, and empirically testing the framework in a series to studies described in this and subsequent sections. The importance of this conceptual framework is that it has explanatory

Measurement framework

In this section of the article we present one approach to QOL measurement based on the assessment of indicator items associated with the domains and indicators summarized in Table 1. In understanding this measurement framework, three points are important to keep in mind. First, the measurement of indicator items results in what are commonly referred to in the field as ‘personal outcomes’ (Gardner & Carran, 2005). Second, measuring both subjective (‘self-report’) and objective (‘direct

Application

To date, the authors have been involved in four applications in the field of IDD of the QOL conceptual and measurement frameworks just described. Although apparent in other education, rehabilitation, and health areas (cf. Schalock, 2004; Schalock et al., 2007) the following discussion focuses on those within the IDD field: planning and providing individualized supports, establishing benchmarks, identifying and targeting significant predictors of QOL-related personal outcomes, and implementing

Implications

The four applications discussed in Section 4 also have significant implications for the IDD field and how we approach program planning and evaluation. Four of these implications that the authors are most aware of—and involved in—are discussed next.

Robert L. Schalock, Ph.D., is the Professor Emeritus at Hastings College in Hastings, Nebraska.

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    Robert L. Schalock, Ph.D., is the Professor Emeritus at Hastings College in Hastings, Nebraska.

    Miguel Angel Verdugo, Ph.D., is the Director at the Institute for Community Inclusion and Professor of Psychology at the University of Salamanca, Spain.

    Gordon S. Bonham, Ph.D., is CEO of Bonham Research in Baltimore, Maryland.

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