Help or hindrance: young people's experiences of predictive testing for Huntington's disease

Research output: Contribution to journalArticle

12 Citations (Scopus)
12 Downloads (Pure)

Abstract

A growing number of young people (YP) are requesting predictive testing (PT) for Huntington's disease (HD), yet there is little research in this area. The aim of this study was to explore YP's experiences of PT for HD, the impact of their result and any gaps in information or support. In-depth interviews were conducted with YP who sought PT for HD from nationally funded Genetics Services. Participants were recruited through the Grampian Genetics Service or Scottish Huntington's Association. Twelve female participants aged 17-26 years were recruited (seven below 20 years). 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: (i) a journey of empowerment, (ii) an ambivalent process or (iii) a poor experience. In pre-test counselling, 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'. YP'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.

Original languageEnglish
Pages (from-to)563-569
Number of pages7
JournalClinical Genetics
Volume87
Issue number6
Early online date26 Jul 2014
DOIs
Publication statusPublished - Jun 2015

    Fingerprint

Keywords

  • adolescent
  • genetic counselling
  • Huntington disease
  • predictive genetic testing
  • qualitative research
  • young adult
  • young people
  • Canada
  • risk

Cite this