Abstract
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.
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Acknowledgements
Grant sponsor: The National Institute of Nursing Research; grant number R01 07970, Janet Williams, Principal Investigator. Participants were recruited through the Neurobiological Predictors of HD grant, funded by the National Institutes of Health R01 NS400 68, Jane S. Paulsen, Principal Investigator. Portions of this content were presented as a poster presentation at the 2006 Midwest Nursing Research Society meeting, (MNRS) in Milwaukee, WI, as a paper presentation at the 2006 Council for the Advancement of Nursing Science (CANS) meeting in Washington, DC, and as a paper presentation at the 2006 International Society of Nurses in Genetics (ISONG) meeting in New Orleans, LA. We express our sincere appreciation to Anne Letocha Ersig, Rose Marie Friedrich, Carolyn Gray, Bonnie Hennig, Mary Lou Klimek, Hillary Lipe, Elizabeth Penziner, Diane Rehak, and Ann Wellman Schwemm who participated in the recruitment, planning, and conduct of focus groups.
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Sparbel, K.J.H., Driessnack, M., Williams, J.K. et al. Experiences of Teens Living in the Shadow of Huntington Disease. J Genet Counsel 17, 327–335 (2008). https://doi.org/10.1007/s10897-008-9151-6
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DOI: https://doi.org/10.1007/s10897-008-9151-6