Parents Sharing Information With Their Children About Genetic Conditions

Abstract 

Introduction

Nurses are in an ideal situation to help families share information with their children about genetic conditions. While many factors contribute to this decision making, little is known about how parents decide when and how to convey this information to their children. The purpose of this qualitative analysis was to examine parents’ beliefs and strategies related to sharing information about a genetic condition with their affected and unaffected children.

Method

One hundred thirty-nine parents participated in this study. Narrative analysis and fundamental qualitative description were employed to identify approaches and strategies that parents used to share information with their children.

Results

Parents’ information sharing approaches and strategies were grounded in the goal of promoting the child’s adaptation to the genetic condition. Parents shared information based on their assessment of the child’s developmental readiness and interest and described information sharing as an unfolding process that continued throughout childhood.

Discussion

The approaches and strategies contribute to understanding the processes associated with information sharing between parents and their children and between health care professionals and parents.