F11 Impact on the grandparents-grandchildren relationship in huntington’s disease

Background Huntington’s disease (HD) is a hereditary neurodegenerative disorder of the central nervous system. It is transmitted from parents to children, producing emotional and structural changes in family life. It is categorized as a minority disease because of its low global prevalence. The positive or negative results of the genetic analysis suppose an impact on family dynamics, with the grandparents-grandchildren relationship being one of the subsystems affected by the risk or the reality of suffering the disease. Aims The double objective of the research presented in this study is: (1) To obtain an in-depth understanding of the emotional process of coping with being at risk of having HD or being symptomatic of the disease, as well as its effect on the relationship between grandparents and grandchildren, and (2) To explore the impact on grandparents of the risk or diagnosis of HD in their grandchildren. Methods/Techniques Five grandparents and five grandchildren belonging to four families affected by HD participated in this study. A qualitative case study methodology was used. Interviews and genograms were used as data collection instruments. Results In the results obtained, avoidance of open conversation about the presence of HD is observed. Conclusions In conclusion, greater knowledge is needed about the specific coping strategies employed when faced with HD in the grandparents-grandchildren subsystem.