Communication Between Parents and Children About Inherited Genetic Conditions

Communication within a family about genetic disorders and associated risks is complex. These authors reviewed 17 original peer-reviewed qualitative or quantitative articles published in 1980–2007 that examined family communication about genetic conditions.

Three researchers independently reviewed the data and identified the following key concepts: issues related to parents’ explanation of genetic conditions and risk to their children, reasons for sharing information, children’s understanding of their parents’ explanations, and emotions evoked for family members.

Although parents would have received some support and guidance from health professionals in the studies reviewed, many parents struggled with one or more of the identified key concepts and expressed a need for help in determining developmentally appropriate information and in managing their child’s emotional response. However, parents reported that most health professionals focused on disease management and provided little support or advice about communicating information concerning the disease to their children. The authors concluded that parents need more support from health professionals to help them communicate effectively with their children. Developmentally appropriate materials and strategies also are needed to help children understand their conditions and cope with that knowledge and their emotional reactions.