Robert L. Schalock

Conceptualization, Measurement, and Application of Quality of Life for Persons With Intellectual Disabilities: Report of an International Panel of Experts

In this article a number of issues involving the concept of quality of life as applied to persons with intellectual disabilities are summarized, and a number of agreed-upon principles regarding its conceptualization, measurement, and application are presented. We realize that the concepts and models presented in this article will vary potentially from country to country, and even from area to area within countries. The cross-cultural understanding of the concept of quality of life is in its infancy, and we hope that the discourses resulting from the material presented in this article will facilitate both cross-cultural understanding and collaborative work. The article reflects current thought about the conceptualization, measurement, and application of this increasingly important and widely used concept in the field of intellectual disabilities and sets the stage for its continuing development.

Cross-cultural study of quality of life indicators.

The concept of quality of life is increasingly being used internationally in the field of intellectual disabilities. We surveyed three respondent groups representing five geographical groupings on the importance and use of the 24 core quality of life indicators most commonly reported in the international quality of life literature. Results suggest (a) similar profiles on importance and use across respondent and geographical groups, but differences in the frequency per response category; (b) significant differences in mean quality of life importance and use scores for both respondent and geographic groupings; and (c) factors on importance and use generally grouped into eight core quality of life domains. Results are discussed in reference to the etic (universal) and emic (culture-bound) properties of the quality of life concept.

Three Decades of Quality of Life

Over the last few decades, the field of mental retardation has embraced the concept of quality of life as both a sensitizing notion and an overarching principle for service delivery. This article summarizes the current understanding of the quality of life construct by examining previous efforts at defining and clarifying the concept, and examines issues that will affect the utility of the construct well into the new century.

The Conceptualization and Measurement of Quality of Life: Implications for Program Planning and Evaluation in the Field of Intellectual Disabilities.

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.

Consumer-Based Quality of Life Assessment: The Maryland Ask Me! Project

The concept of quality of life currently impacts program development, service delivery, management strategies, and outcome evaluation in the area of intellectual disabilities. Maryland uses peer interviewers to assess consumer-perceived quality of life among adult recipients of MR/DD services and supports. In this article we describe the survey instrument and procedures and discuss assessment issues of quality of responses, acquiescence, and proxy respondents. We present the psychometric properties for eight core quality of life domains among 923 people assessed in FY 2001. Results are summarized and development of a model for enhancing social inclusion, personal development, and self-determination was described. Service and personal characteristics relating to quality of life as well as some ways the results can be used for program enhancement are discussed.

Examining the Factor Structure and Hierarchical Nature of the Quality of Life Construct

There is considerable debate in the area of individual quality of life research regarding the factor structure and hierarchical nature of the quality of life construct. Our purpose in this study was to test via structural equation modeling an a priori quality of life model consisting of eight first-order factors and one second-order factor. Data were collected from 769 individuals with mild or moderate intellectual disability from 15 countries in four geographic regions. They all completed a multidimensional quality of life questionnaire. The presence of a single second-order factor in quality of life was empirically demonstrated through confirmatory factor analysis. Comparison of two alternative second-order quality of life factor models was further evaluated. Implications for future research, practice, and public policy regarding services to individuals with intellectual disability are also discussed.

Consumer based quality of life assessment: a path model of perceived satisfaction

Abstract This article reviews recent conceptual and measurement advances within the area of quality of life and summarizes the results of a state-wide study involving consumer-based quality of life assessment that identified factors influencing the perceived level of satisfaction among 237 adult recipients of mental retardation/developmental services and supports. Results of a path analysis conducted on the data indicated that perceived dignity and work contribute most to perceived life satisfaction. The degree of independence consumers feel, and their integration into the community indirectly affect measured satisfaction. Consumer abilities, as measured by intelligence tests, had no direct affect on life satisfaction. Additionally, characteristics such as age, communication problems, and ambulating difficulties also had no effect, either directly or indirectly, on life satisfaction. Results are interpreted in light of the current quality of life movement that includes the search for core quality of life dimensions, the use of methodological pluralism and multivariate research designs, and the increased use of participatory action research.

Integrating Supports in Assessment and Planning.

A systematic approach for addressing the support needs of persons with mental retardation and related developmental disabilities is presented and a new scale to measure individual differences in support needs described. The process employed in developing the scale is explained, including the establishment of a typology of support areas that was drawn from a review of the professional literature, a validation process using Q-sort methodology, and a pilot field test. Critical issues and practical challenges associated with efforts to measure and address the support needs of individuals are discussed.

The Construct of Adaptive Behavior: Its Conceptualization, Measurement, and Use in the Field of Intellectual Disability

This article updates the current conceptualization, measurement, and use of the adaptive behavior construct. Major sections of the article address an understanding of the construct, the current approaches to its measurement, four assessment issues and challenges related to the use of adaptive behavior information for the diagnosis of intellectual disability, and two future issues regarding the relations of adaptive behavior to multidimensional models of personal competence and the distribution of adaptive behavior scores. An understanding of the construct of adaptive behavior and its measurement is critical to clinicians and practitioners in the field because of its role in understanding the phenomenon of intellectual disability, diagnosing a person with intellectual disability, providing a framework for person-referenced education and habilitation goals, and focusing on an essential dimension of human functioning.

Person-Centered Planning: Analysis of Research and Effectiveness

Person-centered planning is a well known and widely used approach to individual program planning in the field of intellectual and developmental disabilities. Its purpose is to develop collaborative supports focused on community presence, community participation, positive relationships, respect, and competence. Because there is little research on its effectiveness, our purpose here was to (a) review the current status of effectiveness research; (b) describe its effectiveness in terms of outcomes or results; and (c) discuss the effectiveness of person-centered planning in relation to evidence-based practices. Analyzed studies suggest that, overall, this planning has a positive, but moderate, impact on personal outcomes for this population. The body of evidence provided in this review is weak with regard to criteria for evidence-based research.