Chapter

Psychosocial issues surrounding juvenile Huntington’s disease

Helen M. Brewer and Aimee Aubeeluck

in Juvenile Huntington's Disease

Published on behalf of Oxford University Press

Published in print January 2009 | ISBN: 9780199236121
Published online November 2012 | e-ISBN: 9780191753213 | DOI: http://dx.doi.org/10.1093/med/9780199236121.003.0011
Psychosocial issues surrounding juvenile Huntington’s disease

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Juvenile Huntington’s disease (JHD) has a tremendous impact on the whole of the family. This quickly becomes clear to anyone who is in contact with those affected by JHD, whether family, friend, or professional, and it will also have become clear to anyone reading the first two chapters of this book, where some families have given such an invaluable and moving insight into their experiences. The words of the families who have shared their experiences in this book will not have failed to touch anyone. Each family has their own story: perhaps the family lived with Huntington’s disease (HD) for many years, or perhaps HD came out of the blue for them; perhaps one child in the family is affected with JHD, or perhaps two siblings are affected. However, there is a common experience that all of these families share and it is this common experience that the first two chapters and this chapter hope to convey.

Juvenile Huntington’s disease has received little attention in the past. It is only recently that research into the psychosocial impact that JHD has on families has begun to appear, and what research there is has mainly focused on parent caregivers. This chapter will mainly summarize the work that has been carried out in the UK looking at the experiences of JHD from the perspective of the parent or guardian, and the impact that the condition has on them, as well as comparing this with research into the impact of adult onset HD on spousal caregivers. It will also discuss the implications that this information has for those supporting families, in whatever capacity. This research from the UK is only the beginning, and so we must also look at the large gaps that remain in our understanding and how this can be taken forward; hopefully, to make the lives of families affected by JHD that little bit easier.

Chapter.  5146 words. 

Subjects: Neurology

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