A better place? Factors in community assessment for parents of children with Down syndrome

Abstract

ABSTRACTInformation seeking often occurs in groups and communities, and these communities differ in ways that impact their usefulness to their members. This study uses grounded theory and information horizons mapping to explore information seeking and sharing in two place‐based communities in Florida, addressing factors associated with participants’ evaluations of their local communities of support. These factors provide insight into parents’ expectations of their information worlds and expectations related to information behaviors of actors within their local information environments. The study finds similar stakeholder groups similar expressions of the belief that some communities were “better” than others for raising children with Down syndrome in both areas, but varying evaluations of their own communities based on personal experiences. Participants agreed on the following factors as important indicators of a strong local community of support: existence and activities of local parent networks and organizations, access to quality education and health care, full inclusion in regular education when desired, social inclusion of their children into the community at large, and employability for adults with Down syndrome.