Phase 1 implementation and evaluation of a model of youth friendly genetic counselling

Advances in knowledge of genetic risk and growing public awareness of testing options, has resulted in an increasing number of adolescents and young adults (AYAs) accessing genetic services for the assessment of hereditary cancer risk. Individuals presenting for genetic testing are supported by genetic counsellors; professionals primarily trained to working within adult-centred models of care. Increasing evidence highlights practice complexities faced in genetics work with AYAs including those related to engagement/communication, client versus family centred models of care, adherence and ethics. Evidence also illustrates deficits in education for genetic counsellors working with this client group. Youth friendly genetic counselling is a new and emerging field characterised by this practice complexity and increasing understanding of the unique implications of genetic counselling on AYA psychosocial wellbeing. This research has seen the development of a youth friendly model of genetic counselling and program of education for those working in the field.

SPONSOR

Peter MacCallum Cancer Centre

Funding

Peter MacCallum Cancer Foundation

Principal Investigator/s

Ms Kate Thompson

Manager: ONTrac At Peter Mac Victorian Adolescent And Young Adult Cancer Service

Contact details

Ms Kate Thompson

Email: [email protected]

Publications & presentations

Thompson, K. Holland, L. &Young, M A. (2014)A Model of Youth Friendly Genetic Counselling, Teenage Cancer Trust International Conference, London, UK

Holland, L. & Young, M.A (2014) A Youth Friendly Model of Genetic Counselling, Human Genetics Society of Australasia, Queenstown, New Zealand.