Experiences of teens living in the shadow of Huntington disease

Kathleen J.H. Sparbel, Martha Driessnack, Janet K. Williams, Debra L. Schutte, Toni Tripp-Reimer, Meghan McGonigal-Kenney, Lori Jarmon, Jane S. Paulsen

Research output: Contribution to journalArticlepeer-review

40 Scopus citations


Research on families with Huntington Disease (HD) has primarily focused on adult decision-making surrounding predictive genetic testing and caregiver stress. Little is known about the experiences of teens living in these families. This qualitative study explored the experiences of 32 teens living in families with HD. Six focus groups were conducted across the U.S. and Canada. Data were analyzed using descriptive qualitative analysis. Huntington disease appeared to cast a shadow over the experiences described by teens. Four themes were identified: watching and waiting; alone in the midst of others; family life is kind of hard; and having to be like an adult. These experiences highlight the need for genetic counselors, health care providers, and school personnel to be aware of issues facing teens living in families with HD. Recognizing patterns of teen experiences may help health care providers develop strategies to support coping by teens in HD families.

Original languageEnglish (US)
Pages (from-to)327-335
Number of pages9
JournalJournal of Genetic Counseling
Issue number4
StatePublished - Aug 2008
Externally publishedYes


  • Adolescent
  • Focus groups
  • Huntington disease
  • Qualitative research

ASJC Scopus subject areas

  • Genetics(clinical)


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