Clin Genet. 2014 May 30. doi: 10.1111/cge.12439. [Epub ahead of print]
Help or hindrance: Young people's experiences of predictive testing for Huntington's disease.
A growing number of young people are requesting predictive testing for Huntington's disease (HD), yet there is little research in this area. The aim of this study was to explore young people's experiences of predictive testing for HD, the impact of their result and any gaps in information or support. In-depth interviews were conducted with young people who sought predictive testing for HD from nationally funded Genetics Services. Participants were recruited through the Grampian Genetics Service or Scottish Huntington's Association. 12 participants aged 17-26 were recruited (seven under 20). All were female. Pre and post-test interviews were conducted where possible. A qualitative thematic analysis suggests three main testing experiences, regardless of test result. Testing may be: (1) a journey of empowerment, (2) an ambivalent process or (3) a poor experience. In pre-test counseling gaps in emotional support were highlighted. The post-test period was particularly difficult if there were unanticipated changes in family dynamics or an individual's result contradicted what they expected 'deep down'. Young people's experiences of PT for HD are generally similar to those of adults, but testing may help or interfere with key issues related to this age and stage. Implications for clinical practice are outlined.
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Adolescent; Genetic Counseling; Huntington disease; Predictive genetic testing; Qualitative research; Young Adult; Young People
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