The internet as an information source for parents in talking to children about genetic conditions

During the last 25 years there has been a gradual move towards more open communication with children and young people about the realities of chronic health conditions affecting themselves or members of their families. With genetic conditions, parents face not only telling children about the management of the condition, but also about potential future risks. Most parents want to discuss these issues with their children but have found little available help or support. The internet is one source of advice parents may consult. For this aurvey the internet was searched for web pages advising parents about talking to children about genetic or other chronic health conditions. Fourteen pages from 12 websites were found relating to genetic conditions and a further 30 to other chronic health conditions. These were analysed for content and for issues relating to reliability. The sites confirmed to parents that it was important to talk to their children and gave advice about how they should act when doing so, but little practical advice about how they could approach this task. Children’s feelings and emotions were rarely mentioned and there was very little advice about discussing genetics and heredity. Pages relating to other chronic illnesses gave a little more advice on what to tell children and a few more practical suggestions for how to do this. When compared to a meta-synthesis of previous research relating to family communication about genetic conditions, there was some mismatch between the information parents need and that provided by websites. Nurses must be aware of parents’ need for help in communicating with children about genetic conditions, and that if they search the internet the content and quality of advice they find will be variable and there will potentially be important areas that are not covered.