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Health Services Research Unit

Sharing information with children and young people about genetic risk

Sharing information with children and young people about genetic risk

This CSO funded post-doctoral training fellowship builds on our previous work which has shown that children and young people growing up at risk of developing and passing on serious inherited conditions can feel poorly served by existing services, and that parents perceive a lack of information and support from healthcare professionals about sharing information with children about genetic conditions. To improve this aspect of Health Services provision the project will:1) explore the information needs of young people at risk of adult-onset hereditary disease; 2) explore professional interactions with young people and their parents and 3) help develop evidence based resources which help parents and professionals in sharing information with young people about genetic conditions. The project will draw upon a mixed methods approach which will include: 1) clinical observations of practitioners interactions with patients and follow up interviews with parents and young people; 2) interviews and a survey of genetics professionals; 3) an analysis of practitioners case notes and 4) an exploration of how young people discuss their risk and predictive testing issues on social networking sites.

Contacts

Status

Completed

Publications

KF Keenan, L McKee, Z Miedzybrodzka. (2014) Help or Hindrance: Young Adults Experiences of Predictive testing for Huntington's disease in the Transition from Adolescence to Adulthood. Abstract published in Clinical Genetics, 359. Available from URL: http://onlinelibrary.wiley.com/doi/10.1111/cge.12439/abstract

KF Keenan, Z Miedzybrodzka, J Eden. (2012) Fostering, adoption and Huntington’s disease: Improving Clients’ Experience. Abstract published in Journal of Neurology, Neurosurgery and Psychiatry. 83:1:A50.

Miedzybrodzka Z, Forrest Keenan K, Eden J. Adoption and Huntington’s disease: Genetics and the Third Sector working together to improve client’s experience. Abstract published in Programme for Joint Meeting UK / Dutch Clinical Genetics Societies & Cancer Genetics Groups Spring Conference, March 2012, Newcastle, UK.