title: Living at risk: concealing risk and preserving hope in Huntington disease.
abstract: Much of the qualitative research on Huntington disease has focused on the genetic testing aspects of HD. The overall purpose of this qualitative study was to gather information about the everyday experience of living with the risk of developing Huntington disease in a sample of individuals at risk for HD who have chosen not to pursue genetic testing. Data for this article was obtained from unstructured, open-ended qualitative interviews of a sample of people participating in the PHAROS study. PHAROS, the Prospective Huntington At-Risk Observational Study, is a multi-site study that aims to establish whether experienced clinicians can reliably determine the earliest clinical symptoms of Huntington disease in individuals at 50% risk for HD who have chosen not to undergo genetic testing. Interviews were conducted at six PHAROS research sites across the United States. In this paper, the research team used qualitative description to construct and explore two main themes: (1) careful concealment of risk as an act of self-preservation and (2) preserving hope.
authors.affiliation: Department of Medical and Molecular Genetics, Indiana University School of Medicine, 975 West Walnut Street, Indianapolis, IN 46202-5251, USA. kquaid@iupui.edu
authors.forename: Kimberly A
authors.initials: KA
authors.lastname: Quaid
authors.forename: Sharon L
authors.initials: SL
authors.lastname: Sims
authors.forename: Melinda M
authors.initials: MM
authors.lastname: Swenson
authors.forename: Joan M
authors.initials: JM
authors.lastname: Harrison
authors.forename: Carol
authors.initials: C
authors.lastname: Moskowitz
authors.forename: Nonna
authors.initials: N
authors.lastname: Stepanov
authors.forename: Gregory W
authors.initials: GW
authors.lastname: Suter
authors.forename: Beryl J
authors.initials: BJ
authors.lastname: Westphal
mesh_terms: D000328:Adult; D015331:Cohort Studies; D005260:Female; D005820:Genetic Testing; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis / Q000235:genetics / Q000503:physiopathology / Q000523:psychology*; D008297:Male; D012307:Risk Factors