Background Over the past two decades the concept of quality of life (QOL) has increasingly become a focus for research and application in the fields of education/special education, health care (physical and behavioural), social services (disabilities and ageing), and families.

Methods  This article summarizes our current understanding of the construct of individual QOL as it pertains to persons with intellectual disabilities (ID). The article's three major sections discuss what we know, what we are beginning to understand, and what we still do not know about the QOL construct.

Results  We currently know the importance of the QOL construct as a service delivery principle, along with its current use and multidimensional nature. We are beginning to understand the importance of methodological pluralism in the assessment of QOL, the multiple uses of quality indicators, the predictors of assessed QOL, the effects of different data collection strategies, and the etic (universal) and emic (culture-bound) properties of the construct. We have yet to understand fully the use of QOL-related outcomes in programme change, how to best evaluate the outcomes of QOL-related services, and how to use the concept of QOL to impact public and disability reform.

Conclusion  The article concludes with a brief discussion of future challenges related to demonstrating the concept's social validity and positive impact on the lives of persons with ID.

The concept of quality of life: what we know and do not know

The general idea that parents and school professionals should work together to improve the education of children has a great deal of history and can be thought of as a broad topic that applies to both general and special education. In special education, however, this important concept can be traced to a distinct set of events and legal precedents.

Exploring the Research

This review identifies research-based definitions of ideal collaborative relationships between special education professionals and culturally and linguistically diverse (CLD) families of children with disabilities, examines research on actual collaboration with such families, and makes recommendations regarding improvement of such collaboration. The main sources of literature are research and opinion publications in peer-reviewed journals and books by leading scholars. The review concludes that barriers to the implementation of ideal practices include deficit views of CLD families, cross-cultural misunderstandings related to the meanings of disability, differential values in setting goals for individuals with disabilities, and culturally based differences in caregivers' views of their roles. Recommendations for change and improvement focus on personnel preparation and on implementing existing models of effective practice.

Collaboration with Culturally and Linguistically Diverse Families: Ideal versus Reality

This review of the literature examines the impact of poverty on the quality of life in families of children with disabilities. Twenty-eight percent of children with disabilities, ages 3 to 21, are living in families whose total income is less than the income threshold set by the U.S. Census Bureau. This review found a variety of impacts of poverty on the five dimensions of family, including health (e.g., hunger, limited health care access); productivity (e.g., delayed cognitive development, limited leisure opportunities); physical environment (e.g., overcrowded and unclean homes, unsafe neighborhoods); emotional well-being (e.g., increased stress, low self-esteem); and family interaction (e.g., inconsistent parenting, marital conflict over money). Implications of the findings for policy, research, and practices are suggested.

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Impacts of Poverty on Quality of Life in Families of Children with Disabilities

Background Increasing emphasis on family-centred approaches to services and supports for families of children with disabilities has surfaced the issue of accountability for family outcomes. We present a review of literature about the impacts of children with disabilities on families as a backdrop to proposing family quality of life as a concept that encompasses impacts of disability and one that can be used to assess the impact of supports and services on families.

Method  We briefly introduce the Beach Center Family Quality of Life Scale, providing information about its factor structure, reliability and convergent validity.

Results  The Beach Center Family Quality of Life Scale contains 25 items assessing family ratings of importance and satisfaction with five domains: Family interaction, Parenting, Emotional well-being, Physical/material well-being and Disability-related supports.

Conclusion  We present a framework for utilizing a measure of family quality of life as a long-term outcome in concert with other short-term measures of service outcomes for families.

Conceptualizing and measuring family quality of life.

The development of collaborative partnerships between parents and professionals is too often unsuccessful. One reason for this failure may be the lack of empirical understanding of the components of interpersonal partnerships. Using qualitative inquiry, 33 focus groups were conducted with adult family members of children with and without disabilities and service providers and administrators. In addition, 32 individual interviews were conducted with non-English-speaking parents and their service providers. Indicators of professional behavior facilitative of collaborative partnerships were identified. These indicators were organized into six broad themes: (a) Communication, (b) Commitment, (c) Equality, (d) Skills, (e) Trust, and (f) Respect. The specific meaning of each theme is described, including similarities and differences between professionals and family members. Policy, practice, and future research implications are discussed.

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Dimensions of Family and Professional Partnerships: Constructive Guidelines for Collaboration

This article reports the research that resulted in the authors' identifying 18 core concepts of policy affecting families who have children with disabilities. It sets out the research methodology; defines the 18 core concepts; distinguishes between policy that affects primarily individuals with disabilities on the one hand and policy that affects the families of children with disabilities on the other hand; and deliberately does not discuss generic "family policy," even though families affected by disability are also influenced by that body of policy.

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The Core Concepts of Disability Policy Affecting Families Who Have Children with Disabilities

Citation Turnbull, A.P., Turnbull, R., Poston, D., Beegle, G., Blue-Banning, M., Diehl, K., Frankland, C., Mische Lawson, L., Lord, L., Marquis, J., Park, J., Stowe, M., & Summers, J.A. (2004). Enhancing quality of life of families of children and youth with disabilities in the United States. In A.P. Turnbull, I., Brown, & H.R. Turnbull (Eds.), Family quality of life: An international perspective (pp. 51-100). Washington, DC: American Association on Mental Retardation.

Gwen Beegle

Papers

Dimensions of Family and Professional Partnerships: Constructive Guidelines for Collaboration

The Core Concepts of Disability Policy Affecting Families Who Have Children with Disabilities

Enhancing quality of life of families of children and youth with disabilities in the United States