Paper
Wednesday, July 21, 2004
9:30 AM - 10:00 AM
Wednesday, July 21, 2004
2:30 PM - 3:00 PM
This presentation is part of : Posters
Managing Information in Families of Children with a Genetic Condition
Agatha Gallo, PhD, RN1, Kathleen Knafl, PhD2, Denise Angst, DNS3, Emily Hadley, MS, RN1, Carrol Smith, MS, RN1, and Sharon Coyer, PhD, RN1. (1) Maternal-Child Nursing, University of Illinois at Chicago, Chicago, IL, USA, (2) School of Nursing, Yale University, New Haven, CT, USA, (3) Department of Pediatrics, Lutheran General Children's Hospital, Park Ridge, IL, USA
Learning Objective #1: Describe parents’ beliefs and strategies related to sharing information about their child’s genetic condition.
Learning Objective #2: Compare and contrast parents’ beliefs and strategies about sharing information among various genetic conditions.
Objective: Nurses are in an ideal position to help families manage information about their child's genetic condition. Managing information is an ongoing process that begins at the child's diagnosis and continues in various forms, throughout the child's life. This process includes seeking, interpreting, assimilating and conveying information. With genetic conditions, how families manage information has implication for the child, the immediate and the extended family. The purpose of this qualitative analysis was to examine parents' beliefs and strategies related to sharing information about their child's genetic condition. Additionally, the analysis examines similarities and differences across genetic conditions.

Sample: The sample includes 35 families of children with various genetic conditions including sickle cell disease, phenylketonuria, cystic fibrosis, neurofibromatosis, Marfan syndrome, hemophilia, and von Willibrand Disease. Families were recruited from multiple clinic sites where children with genetic conditions receive care.

Conceptual Model: Knafl and Deatrick's Family Management Style Framework was used to guide the analysis. This framework takes into account parents' views of their situation, management behaviors, and perceived consequences as they relate to family management of a child's chronic condition.

Design and Methods: Individual audiotaped interviews were conducted with one to two parents per family. The interviews were transcribed verbatim, processed, and coded using the ATLAS.ti software. Data were displayed and analyzed through the construction of a series of matrices.

Findings: Specific findings to be highlighted in this presentation center on the decision making process regarding sharing information with family members, friends, children and others; and the contributions of health care providers to parental strategies for information sharing.

Conclusions and Implications: With the growing availability of genetic information to families, this study provides an important evidence base related to how families share information when their child has a genetic condition. These findings have implications for both nursing practice and future research.

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Sigma Theta Tau International
July 21, 2004