Keenan, K. F., Miedzybrodzka, Z., van Teijlingen, E., McKee, L. and Simpson, S., 2007. Young people's experiences of growing up in a family affected by Huntington's disease. Clinical Genetics, 71 (2), pp. 120-129.
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Previous research and clinical experience suggest that Huntington's disease (HD) can considerably affect family life, particularly for young people (YP) at risk. The goal of this study was to describe the experiences of YP from families affected by HD. YP were identified through the regional genetics clinic and the Scottish Huntington's Association. In-depth interviews were used to explore YP's experiences of finding out about HD in the family; perceptions of their own risk; caring activities; protective or risk factors; and the impact of HD on relationships with siblings, parents, extended family members, and the wider community. Thirty-three YP between the ages of 9 and 28 years were interviewed. A qualitative thematic analysis was undertaken. The analysis revealed four main themes: YP as carers, the worried well, those who cope, and those at risk/in need. These themes highlight the varied experience of growing up in a family affected by HD. Whilst some YP successfully coped, others experienced considerable problems and were at risk of physical and/or emotional harm. In understanding why some cope better than others, our findings suggest protective and risk factors within these themes. In particular, participants who grew up knowing about HD from an early age seemed to cope better.
|Uncontrolled Keywords:||at risk • genetic services • neurodegenerative disease • qualitative study • risk factors • Scotland|
|Subjects:||Technology > Medicine and Health > Nursing and Midwifery|
|Group:||School of Health and Social Care > Centre for Midwifery, Maternal and Perinatal Health|
|Deposited By:||TEMP RESEARCH|
|Deposited On:||22 Feb 2010 19:33|
|Last Modified:||07 Mar 2013 15:21|
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