Ivan Brown

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.

Frailty: constructing a common meaning, definition, and conceptual framework.

The term frailty has been used for many years, both in everyday and academic language. It is a term that appears, on the surface, to be simple enough in its meaning, yet it has been used in a variety of ways to describe both people and a condition that applies to people. Moreover, little conceptual thought has gone into the nature of frailty and the factors that might affect it. This paper presents a definition of frailty: frailty occurs when there is diminished ability to carry out the important practical and social activities of daily living. It also presents a conceptualization of frailty that specifies its basic components, the categories of factors that contribute to it, and its relationship to closely related concepts.

Quality of life indicators and health : Current status and emerging conceptions

Quality of life is an increasingly common theme in the health status and health promotion literatures. Six approaches that consider quality of life and health are reviewed. These are (a) health-related quality of life; (b) quality of life as social diagnosis in health promotion; (c) quality of life among persons with developmental disabilities; (d) quality of life as social indicators; (e) the Centre for Health Promotion (University of Toronto) model, and (f) Lindstroms quality of life model. Each approach is considered as to its emphasis on objective or subjective indicators, individual or system-level measurement, value-laden or value-neutral assumptions, and potential relationship to social policy and social change goals. The links among the social indicators, quality of life, and health promotions areas are examined.

Making the links between community structure and individual well-being: community quality of life in Riverdale, Toronto, Canada.

An inquiry into community quality of life was carried out within a framework that recognizes the complex relationship between community structures and individual well-being. Through use of focus groups and key informant interviews, community members, service providers, and elected representatives in a Toronto community considered aspects of their community that affected quality of life. Community members identified strengths of access to amenities, caring and concerned people, community agencies, low-cost housing, and public transportation. Service providers and elected representatives recognized diversity, community agencies and resources, and presence of culturally relevant food stores and services as strengths. At one level, findings were consistent with emerging concepts of social capital. At another level, threats to the community were considered in relation to the hypothesized role neo-liberalism plays in weakening the welfare state.

Review: The development of family quality of life concepts and measures

Historically, intervention programmes in intellectual and developmental disabilities have targeted the individuals special needs independent of the family and environmental context. This trend has been changing over the past two decades. This paper presents a literature review on changing trends in family support and the development of family quality of life (FQOL) and intellectual disability from a construct to a theory. The evolution of research in quality of life from the perspective of the individual with the disability to the family is described. A description of the development of FQOL measures is included, specifically an introduction and comparison of the two leading comprehensive initiatives on measuring FQOL - international FQOL project and the FQOL initiative of the Beach Center on Disability, in the USA. This paper provides the conceptual background and context to the other papers presented in this special issue, which focus on FQOL measurement in specific contexts.

Family Quality of Life among Families with a Member Who Has an Intellectual Disability: An Exploratory Examination of Key Domains and Dimensions of the Revised FQOL Survey.

BACKGROUND The Family Quality of Life Survey (FQOLS-2006) was developed as the result of increased interest in family quality of life (FQOL) among families with a member who has an intellectual disability (ID). The instrument includes nine life domains and six dimensions reflecting the main areas and characteristics of FQOL. The aim of the current study was to provide a descriptive analysis of the domains and dimensions of the survey and to explore their relationship to one another and to global satisfaction. METHOD A convenience sample of 35 participants with a family member who had ID completed the FQOLS-2006 in a large urban centre in Canada. The data were analysed using descriptive analyses. RESULTS The findings showed that although participants differentiated between different domains and dimensions, as reflected in their variability, stability was also found. For example, support from others was rated lowest across most dimensions, while family relationships and health of the family were generally rated higher. CONCLUSIONS The findings strengthen the importance of examining both the overall perception of FQOL as well as the perceptions in individual life domains. Moreover, they highlight the need to examine each life domain according to its various dimensions. In sum, the results call for further examination of the FQOLS-2006 as a useful tool for assessing FQOL and for implementing services based on it.

Measuring the quality of life of older persons: a model with implications for community and public health nursing

Measuring the quality of life (QOL) of older persons can assist health professionals in achieving a number of important objectives. These include assessing the effects of illness and treatment, identifying need for support services, and developing health enhancing environments. Most QOL models focus unduly on illness and disability, define QOL too narrowly, and do not consider aspects of personal control and potential opportunities for change. A new model of QOL with associated instrumentation, the Quality of Life Profile: Seniors Version (QOLPSV), is described. Administration of the QOLPSV to 205 older persons in Ontario, Canada found it to be reliable and valid. Limitations of the instrument are presented and potential uses explored.

Assessing the Quality of Life of Persons with Developmental Disabilities: Description of a New Model, Measuring Instruments, and Initial Findings

A conceptual model of quality of life and associated instrumentation for collecting data from persons with developmental disabilities are presented. The conceptual model assumes that the components of quality of life for persons with developmental disabilities are the same as for all persons. Additionally, in recognition of the complexity and importance of quality of life assessments, a multi‐method, multi‐source approach was developed. Results from a preliminary study provide evidence for the reliability and validity of the instrumentation associated with the model. The meaning of these preliminary results are examined and the issues raised by such assessments are discussed.

Embracing quality of life in times of spending restraint

Quality of life has emerged as an important trend in recent years in the field of intellectual disabilities. At the same time, spending restraints in developed countries have placed strains on services. This paper explores the relationship between these two seemingly opposing trends. Quality of life is seen as the goal toward which we strive, and also the degree to which we have achieved that goal. It is proposed that we “reframe” to quality of life. Reframing to quality of life is based on the principle that every person with intellectual disabilities has the right to lead a life of quality, and presents us with three service goals, namely, to maintain or improve 1) good conditions of life, 2) each persons happiness, and 3) the ways people have of becoming enabled to lead fulfilling lives of their own choosing. It is suggested that we need to reframe to quality of life in times of spending restraint to ensure adequate service standards, to use our resources in ways that are most beneficial to people wit...

Psychometric Properties of the Full and Short Versions of the Quality of Life Instrument Package: Results from the Ontario province-wide study

Results that bear upon the psychometric properties of the Quality of Life Instrument Package are presented. The reliability and validity of quality of life data from a probability sample of 500 persons with developmental disabilities in Ontario were assessed. The data indicate that most of the instruments found in the package met acceptable psychometric standards. In some cases, specific domain scores need to be interpreted with caution. The Full Version of the instrument seems appropriate for ongoing practical program planning with clients. The Short Version seems especially appropriate for evaluation and monitoring purposes.