Working with users of genetics services to develop a web-based resource to enhance health professional education: real stories, real involvement

Emma Tonkin, Kevin McDonald, Kathryn Kirk, Buddug Williams, Rajesh Summan, Heather Skirton

Allbwn ymchwil: Pennod mewn Llyfr/Adroddiad/Trafodion CynhadleddCyfraniad i gynhadleddadolygiad gan gymheiriaid

Crynodeb

Introduction. Helen went swimming one morning with her daughter and son, an apparently healthy, fit 19 year old. He swam to the end of the pool, collapsed and died. Helen's story tells of her determination to 'make sense' of her son's death and to identify the cause. It was eventually discovered that hre son died from an inherited cardiac condition, and that her husband, daughter and grandchildren are also at risk from the condition, for which they are now receiving treatment. Helen told her story because she wanted to raise awarness about the condition (Long QT syndrome). Helen's account is from a collection of stories gathered to provide a web-based education resource for nursing professional groups, to promote awareness and understanding about genetics and how it impacts on people's lives. Genetics is important and relevant to healthcare, not only because of the impact it has currently on the daily lives of people with, or at risk of a genetic condition, and their families and carers, but also because of its future potential.
Iaith wreiddiolSaesneg
TeitlN/A
Nifer y tudalennau7
StatwsCyhoeddwyd - 4 Medi 2008
Digwyddiad Net 2008 Conference. 19th Annual International Participative Conference, Church College, University of Cambridge. - University of Cambridge
Hyd: 4 Sep 20084 Sep 2008

Cynhadledd

Cynhadledd Net 2008 Conference. 19th Annual International Participative Conference, Church College, University of Cambridge.
Cyfnod4/09/084/09/08

Ôl bys

Gweld gwybodaeth am bynciau ymchwil 'Working with users of genetics services to develop a web-based resource to enhance health professional education: real stories, real involvement'. Gyda’i gilydd, maen nhw’n ffurfio ôl bys unigryw.

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