ASIS&T 2014 Annual Meeting 
Seattle, WA | October 31 - November 5, 2014

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

Amelia N. Gibson
University of North Carolina at Chapel Hill, United States of America

Monday, Nov. 3, 1:30pm


In this paper I use grounded theory and information horizons mapping to explore factors related to information seeking and sharing in two place-based communities in Florida. Specifically, this paper examines the factors associate with participants’ evaluations of their communities of support. This is important as it provides insight into parents’ understanding of community structure, and their expectations from their information worlds/environments. The study finds similar community structures, but different participant expectations. It also finds that while parents expressed the belief that some communities were “better” than others for raising children with Down syndrome, they were not uniform in their evaluation of their own communities. Some factors in evaluating communities were existence and activity of local parent organizations, access to quality education and health care, and inclusion of their children into the community at large, among others. Other factors that influenced individuals’ access to information in their communities were robustness of the parent network, proximity to university hospital systems, and local attitudes toward inclusion in education.