4. The internet and information for parents' about communicating genetic risk information to their children (431)
Alison Metcalfe, Research Associate, School of Health Sciences, The University of Birmingham, Birmingham, United Kingdom
Co authors: Gill Plumridge, Alison Metcalfe & Jane Coad
a.m.metcalfe@bham.ac.uk
Abstract:
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 has been observed. However, with genetic conditions, parents face the dilemma of not only telling children about the management of the condition, but also about potential future risks. Parents often want to discuss these issues with their children but report little available support. The Internet is one source of advice parents can consult. For this study the internet was searched, using a common search engine for web pages advising parents about talking to children about genetic or other chronic health conditions. The web pages found were analysed for content in the information provided. Fourteen pages were found relating to genetic conditions and a further 30 to other chronic health conditions. Websites confirmed to parents that it was important that they talked to their children, and gave advice about how they should behave when doing so, but gave little practical advice about how they could approach this task. Children’s feelings and emotional reactions were rarely mentioned despite these being important aspects of children’s coping with this information. There was also 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. There was some mismatch between the information parents most need, (identified by a recent meta-synthesis study) and that provided by websites. Nurses need to be aware of parents need for help in communicating with children about genetic conditions, and should advise accordingly. But also nurses should help parents recognise the variability in content and quality of the advice available on the Internet.
Source of Funding: UK - Health Service (National)
Deaprtment of Health
Amount in Funding: 100,001 - 500,000
Biography:
First author is Gill Plumridge: Gill is a research associate working in the School of Health Sciences at the University of Birmingham. Gill has a social work background originally but now works on health related research studies exploring family communication about genetic conditions.