Experiences of Teens Living in the Shadow of Huntington Disease
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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.
KeywordsHuntington disease Adolescent Qualitative research Focus groups
- Bergeron, B. (2004). Case studies in genes and disease: A primer for clinicians. Philadelphia: American College of Physicians.Google Scholar
- Driessnack, M. (2006). Adolescence. In C. L. Edelman & C. Mandle (Eds.), Health promotion throughout the lifespan (pp. 502–522, 6th ed.). St. Louis: Mosby.Google Scholar
- Duncan, R. (2005). “Holding your breath”: Predictive genetic testing in young people. Unpublished doctoral dissertation, The University of Melbourne.Google Scholar
- Duncan, R. E., Gillam, L., Savulescu, J., Williamson, R., Rogers, J. G., & Delatycki, M. (2008). “You’re one of us now”: Young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP). American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 148C, 47–55.CrossRefGoogle Scholar
- Ginsburg, K. R. (2007). Engaging adolescents and building on their strengths. Adolescent Health Update, 19(2), 1–8.Google Scholar
- Holloway, I., & Wheeler, S. (2002). Qualitative research in nursing (2nd ed.). Oxford: Blackwell Publishing.Google Scholar
- Morse, J. M., & Field, P. A. (1995). Qualitative methods for health professionals (2nd ed.). Thousand Oaks: Sage.Google Scholar
- National Alliance for Caregiving (2005). Young caregivers in the US. Bethesda, MD: National Alliance for Caregiving.Google Scholar
- QSR (2000). NVivo. Doncaster, VIC, Australia: QSR International.Google Scholar
- Rosenblatt, A., Ranene, N., Nance, M., & Paulsen, J. (1999). A physician’s guide to the management of Huntington’s disease (2nd ed.). New York: Huntington’s Disease Society of America.Google Scholar
- Warby, S. C., Graham, R. K., & Hayden, M. R. (2007). Huntington disease. Retrieved 19 November 2007 from GeneReviews at http://www.genetests.org/servlet/access?db=geneclinics&site=gt&id=8888891&key=pibbn9eKgaEuy&gry=&fcn=y&fw=ojaX&filename=/profiles/huntington/index.html.
- Williams, J. K., Hamilton, R. J., Nehl, C., McGonigal-Kenney, M., Schutte, D. L., Sparbel, K. J. H., et al. (2007). No one else sees the difference: Family members’ descriptions of symptoms in persons with preclinical HD and attempts to manage these symptoms. American Journal of Medical Genetics, Part B, 144B(5), 636–641.CrossRefGoogle Scholar
- Williams, J. K., Paulsen, J. S., Schutte, D. L., & Tripp-Reimer, T. (2001). Family health after predictive HD testing. Retrieved from http://crisp.cit.nih.gov.