Information Management in Families Who Have a Child With a Genetic Condition

In families with children with genetic conditions, information management may influence how parents view their child; their reproductive decision making; and how, when, what, and why they communicate about the condition to other family members. The purpose of this study was to identify unique patterns of information management and to explore the relationship between these patterns and individual and family characteristics and functioning. The sample was composed of 142 parents in 86 families in which a child had a single-gene condition. Four distinct information management patterns were identified that varied in the parents' understanding of the genetic aspects of the condition: accurate understanding-open (35%, n = 30), accurate understanding-selective (24%, n = 21), discrepant understanding (15%, n = 13), and confused understanding (26%, n = 22). In two patterns, accurate understanding-open and accurate understanding-selective (59%), 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. In the discrepant understanding pattern, which 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 of the genetic aspects of the condition. Statistically significant differences were found between information management patterns and parents' education, family annual income, and health insurance coverage. These information management patterns reflect how parents access, interpret, and convey genetic information and can influence the effectiveness of health care providers' interactions with these families.