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.
The International Family Quality of Life Project, begun in 1997, involves the collaboration of a team of researchers from Australia, Canada, Israel, and the United States whose aim was to conceptualize “family quality of life” and develop a survey tool. The authors describe the basis for the conceptualization and explain the survey development process. An initial version of the survey (the Family Quality of Life Survey—FQoLS‐2000) was used to collect FQoL data across several countries in the early 2000s. The experiences of survey respondents and administrators and subsequent data analysis suggested modifications that resulted in an updated version—the FQoLS‐2006. This new version focuses on 9 areas of family life: health, finances, family relationships, support from other people, support from disability‐related services, influence of values, careers and planning for careers, leisure and recreation, and community interaction. The authors explore each of these areas in relation to 6 underlying concepts: importance, opportunities, initiative, attainment, stability, and satisfaction. Other sections entail obtaining information on the family make‐up, family member, or members, with intellectual disability, and an overall summary of FQoL. The authors note that information from the FQoLS‐2006 should be useful for a wide variety of purposes related to providing supports to individuals and families.
Historically, intervention programmes in intellectual and developmental disabilities have targeted the individual's 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 FQOLinternational 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.
The California drought of 1975-77 has been correlated with unusual size changes in populations of two species of Euphydryas butterflies. Several populations became extinct, some were dramatically reduced, others remained stable and at least one increased. These differences in population dynamic response are not concordant with predictions made earlier that populations with heavy density-dependent mortality should be more stable in the face of drought than unregulated populations. The different responses are related to the fine details of the relationships between the insects and their host plants, relationships which are variable between populations. Revised predictions are given in the light of better knowledge of the variability and complexity of these insect-host relationships. The diversity of responses underlines the dangers of generalizing about "the ecology" of a taxonomic species. The extinctions support the view that such events are frequent and significant in the biology of populations.
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