Thursday, July 12, 2007
This presentation is part of : Family Health Issues
Information Management in Families with Children Who Have Genetic Conditions
Agatha Gallo, PhD, RN, FAAN, Maternal-Child Nursing, University of Illinois at Chicago, Chicago, IL, USA, Kathleen Knafl, PhD, FAAN, School of Nursing, Oregon Health & Science University, Portland, OR, USA, and Denise Angst, DNS, Department of Pediatrics, Advocate Health Care, Park Ridge, IL, USA.
Learning Objective #1: The learner will be able to describe family information management patterns identified from inteviews conducted with parents of children with genetic conditions.
Learning Objective #2: The learner will be able to describe the association between family information management patterns and measures of family functioning and quality of life.

Because little is known about information management in families who have children with genetic conditions, it is critical to understand how these families manage information and communicate with others about the condition. The purpose of this study was to identify family information management patterns and to examine whether there were differences in the measures of family functioning and quality of life based on information management patterns. The sample included 86 families of children with various single gene conditions: sickle cell disease, phenylketonuria, cystic fibrosis, Marfan syndrome, neurofibromatosis, hemophilia, thalassemia, and von Willebrand disease. Parents participated in individual face-to-face interviews and completed four standardized measures: Family APGAR, Family Hardiness Index, Feetham Family Functioning Survey, and Quality of Life Index. Individual interviews were transcribed verbatim, and processed and coded using the Atlas.ti software program. Using a series of matrices, thematic analysis was conducted to identify and describe distinct patterns of information management. Significant differences in family functioning and quality of life between groups were examined by t-tests and one-way ANOVAs as appropriate. Findings revealed four information management patterns: Accurate-Open, Accurate Selective, Discrepant and Confused. These patterns were distinguished based on parents’ understanding of the genetic aspects of the condition and their information management. However, there were no statistically significant differences in total and subscale scores of the standardized measures by information management pattern. Families of children with genetic conditions have a variety of ways to access and interpret information, and convey this information to others that are not associated with family functioning and quality of life, suggesting that different management approaches are appropriate. As the genetic and genomic contributions to health conditions increase, the information from this program of research provides health care professionals with important insights that can inform and guide evidence-based education, intervention and practice with these families.