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Experiences of teens living in the shadow of Huntington Disease
Journal of Genetic Counseling
  • KJH Sparbel
  • Martha Driessnack, University of Iowa
  • Janet K. Williams, University of Iowa
  • D. L. Schutte
  • Toni Tripp-Reimer, University of Iowa
  • M. McGonigal-Kenney
  • L. Jarmon
  • J. S. Paulsen
Document Type
Peer Reviewed
Publication Date
NLM Title Abbreviation
J Genet Couns
PubMed ID
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.
  • Family Relations,
  • Huntington's Disease -- Psychosocial Factors -- In Adolescence,
  • Life Experiences,
  • Adolescence,
  • Content Analysis,
  • Data Analysis Software,
  • Data Analysis,
  • Statistical,
  • Descriptive Statistics,
  • Female,
  • Focus Groups,
  • Funding Source,
  • Male,
  • Qualitative Studies,
  • Human
Published Article/Book Citation
Journal of Genetic Counseling, 17:4 (2008) pp.327-335.
Citation Information
Journal of Genetic Counseling. 2008 Aug;17(4):327-335.