Quality of Life for Children with Developmental Disabilities: A New Conceptual Framework

Although there are frequent references to quality of life for children with developmental disabilities made in the context of government policy, service programs, and interventions by professionals, the construct has not been well defined and conceptualized in the literature. Accordingly, the research reported here describes the qualitative methods used to develop a conceptual framework of quality of life for this group of children. The major elements of the emergent conceptual framework and its significance are also outlined. Optimizing quality of life is often held out as a broad goal of policies, services, programs, and individual interventions for children with developmental disabilities and delays (Zekovic & Renwick, 2003). In recent years much attention has been given to defining and conceptualizing this complex construct and operationalizing it in the form of measurement tools for adults with developmental disabilities (Renwick, Brown & Nagler, 1996; Schalock, 1996). However, there has been little attention to doing so for children. In essence, what it actually means to improve quality of life for this group of children has not been well delineated. Thus, conceptual frameworks of quality of life are needed to flush out what the concept means and to provide a foundation for development of useful instrumentation to tap this construct with respect to this group of children. To date, few attempts at conceptualizing quality of life for children that include those with developmental disabilities have been made. Collectively, these have tended to focus on three main issues. Specifically, some emphasize measurement rather than the complexities of the meaning of the concept (e.g., Varni, Seid & Rode, 1999). Others are concerned with healt