Information Management Patterns
Four distinct information management patterns were identified based on parents' understanding of the genetic aspects of the condition: Accurate Understanding-Open, Accurate Understanding-Selective, Discrepant Understanding and Confused Understanding (see Table 4). In two patterns, Accurate Understanding-Open and Accurate Understanding-Selective, over half (59%) of the parents had an accurate understanding of the genetic aspects of the condition, and the patterns were differentiated from one another by parents' views about sharing information with others. In the Discrepant Understanding pattern, that included only two-parent families, one parent had an accurate understanding and one parent a confused understanding of the genetic aspects of the condition. In the Confused Understanding pattern, parents had an inaccurate understanding of one or more the genetic aspects of the condition.