Young people's experiences of growing up in a family affected by Huntington's disease
Authors: Keenan, K.F., Miedzybrodzka, Z., van Teijlingen, E., McKee, L. and Simpson, S.A.
Journal: Clinical Genetics
Volume: 71
Issue: 2
Pages: 120-129
eISSN: 1399-0004
ISSN: 0009-9163
DOI: 10.1111/j.1399-0004.2006.00702.x
Abstract: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. © 2007 The Authors Journal compilation.
Source: Scopus
Young people's experiences of growing up in a family affected by Huntington's disease.
Authors: Forrest Keenan, K., Miedzybrodzka, Z., van Teijlingen, E., McKee, L. and Simpson, S.A.
Journal: Clin Genet
Volume: 71
Issue: 2
Pages: 120-129
ISSN: 0009-9163
DOI: 10.1111/j.1399-0004.2006.00702.x
Abstract: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.
Source: PubMed
Young people's experiences of growing up in a family affected by Huntington's disease
Authors: Keenan, K.F., Miedzybrodzka, Z., van Teijlingen, E., McKee, L. and Simpson, S.A.
Journal: CLINICAL GENETICS
Volume: 71
Issue: 2
Pages: 120-129
eISSN: 1399-0004
ISSN: 0009-9163
Source: Web of Science (Lite)
Young people's experiences of growing up in a family affected by Huntington's disease
Authors: Keenan, K.F., Miedzybrodzka, Z., van Teijlingen, E., McKee, L. and Simpson, S.
Journal: Clinical Genetics
Volume: 71
Pages: 120-129
ISSN: 0009-9163
DOI: 10.1111/j.1399-0004.2006.00702.x
Abstract: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.
Source: Manual
Preferred by: Edwin van Teijlingen
Young people's experiences of growing up in a family affected by Huntington's disease.
Authors: Forrest Keenan, K., Miedzybrodzka, Z., van Teijlingen, E., McKee, L. and Simpson, S.A.
Journal: Clinical genetics
Volume: 71
Issue: 2
Pages: 120-129
eISSN: 1399-0004
ISSN: 0009-9163
DOI: 10.1111/j.1399-0004.2006.00702.x
Abstract: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.
Source: Europe PubMed Central