1. Young people's use of the internet for information and support about hereditary disease Zosia Miedzybrodska Karen Forrest Keenan
2.
3.
4.
5.
6.
Editor's Notes
1 minute on who we are/our backgrounds: Karen – Is a qualitative researcher and medical sociologist. She recently completed her PhD which explored how families communicate about hereditary illness, particularly Huntington’s disease and hereditary breast/ovarian cancer. Karen previously worked as a Research Fellow on two Wellcome Funded projects and has published several papers from these on family communication about genetic risk and young people’s experiences. In the past five years as well as undertaking a part-time PhD she has worked for the Scottish Huntington’s Association as their Youth Service Manager. The service provides information, support and advice to children, young people and families affected by HD.
Background to project proposal: Few minutes Family communication about genetic risk is important because individuals discover their risk of disease, any risk to future children and the potential impact this may have for other important life decisions e.g. any preventive/treatment options, careers, finances, relationships and so on. In general health professionals encourage the disclosure of genetic risk to relatives but the responsibility for passing on such information nearly always remains with families. A generation of young people is growing up with parents who have had access to predictive and prenatal genetic testing for hereditary illnesses, and they have faced questions around when, what and how to tell their children about genetic risk. However, research and clinical experience suggests that family communication about hereditary illness is not straightforward and that some recipients are misinformed, poorly informed or even ignorant about their family disease. (Wilson et al., 2004; Clarke et al., 2005). Although a growing body of work has begun to explore communication in families about genetic risk little work has focused upon recipients experiences, particularly how young people find out about hereditary illness, and their information needs. One exception is our recent study of young people growing up in a family with Huntington's disease which indicated that young people generally want to know what is wrong in their family and access information from a variety of sources e.g. parents, support groups and the internet. In relation to Huntington's disease there are specific sites for young people to access information and support about the illness e.g. www.hdscotland.org/youth , www.ypahd.ca
Aims: The aim of this study would be to explore the information needs of young people growing up in a family with hereditary illness through a qualitative analysis of their use of the internet e.g. on discussion groups and social networking sites. In particular the study would explore what type of questions young people ask, any triggers which raise questions/issues for them, and the relation of their questions to their age/developmental stage, as well as how these platforms engage and communicate with their users.
Explore questions and issues young people raise on discussion forums and social netowkring sites about living with hereditary illness. Choose two disease groups to compare e.g.Huntington's disease and Cystic Fibrosis or Clubfoot Explore which platforms engage young people and how/where young people communicate with each other on this issue Use qualitative thematic analysis to describe major themes Reflect on ethical issues of doing research on internet communities
AIM = to get paper from pilot study e.g. Journal of genetic counselling, Health, Risk & Society
![Background: ,[object Object],[object Object],[object Object],[object Object]](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)