| According to the 1990 National Health Interview Survey, over 29% of families in the United States included a member with a significant activity limitation due to a chronic physical or mental condition (Fujiura, 1998). The family is the primary provider of services for children with disabilities, yet has been largely overlooked as the unit of analysis in disability policy research (Fujiura, 1998). In answer to the need for family-level outcomes, this study expands the quality of life research to the next logical step---family quality of life.The specific questions guiding this research were: (1) What are the domains of family quality of life? (2) What are the specific subdomains that comprise each domain? (3) How is family quality of life defined and conceptualized?Data were collected through focus groups and individual interviews in urban and rural settings to elicit the participants' understanding of family quality of life. Participants were 187 individuals which included family members (e.g., parents, grandparents, foster parents, siblings) of children with a disability, family members of children with disabilities for whom English was not their primary language, individuals with a disability, family members of children without a disability, service providers, and administrators. Ten domains of family quality of life are identified and described in terms of sub-domains and key points raised by the participants. The ten domains are categorized into individually-oriented domains (advocacy, emotional well-being, health, physical environment, productivity, and social well-being) and family-oriented domains (daily family life, family interaction, financial well-being, and parenting). Based on the participants' comments and the ten domains, a definition and model of family quality of life is presented. Additionally, 12 principles are proposed to guide the application of the quality of life model. Implications are discussed in terms of future directions for research and family support. |
