LAUSR

The objective of the research is twofold: (1) To understand the emotional process of coping with being at risk or being symptomatic of Huntington's disease (HD), and its effect on the relationship between grandparents and grandchildren. (2) To explore the impact on grandparents of the risk or diagnosis of HD in their grandchildren. A qualitative case-study methodology was used. The interview was used as data collection instrument and the genogram as a graphic representation. The consent of the informants was requested, the permission of the Korean Huntington Association of Castilla y León is obtained and the favorable Report of the Bioethics Commission of the University of Burgos. Avoidance of open conversation about the presence of HD is observed. The impact of HD on the grandparent-grandchild subsystem in family dynamics is confirmed. Greater knowledge of HD-specific coping strategies is needed in this subsystem.