Young People in HD Families

HD Lighthouse Contributing Editor's Comment: Here's another welcome article based on asking HD family members about their experiences, in this case 33 young people from ages 9 through 28 in Scotland.

Previous research has suggested that growing up in a household with a parent with Huntington's Disease has a negative impact on young people, but much of this research is more than twenty years old. In the current study, the authors found that some young people were able to cope well but that there were areas for significant concern with others.

The questions were nondirective in that the participants were asked to talk about their experiences. As a result the study is most useful for identifying issues rather than determining the percentages of young people with particular problems.

About a third of the group reported assuming adult responsibilities as caregivers to an affected parent and/or a younger sibling. When the other parent was absent, ill, or working long hours, minor children took on caregiving responsibilities, often missing school and becoming isolated. Those children for whom the appropriate support was available from other family members and professional carers were better able to cope. Young adult carers were critical to the family system and took on significant responsibilities and school and career plans were affected.

Some of the young people had troubling dealing with their own at risk status, experiencing exhaustion, insomnia, nightmares, poor self-esteem, difficulty in forming relationships, anxiety, and/or panic attacks. Three reported that they only found out about HD in their families in their late teens or early twenties and that it had come as a shock. Some of the young people expressed their belief that they would definitely develop HD.

Various coping strategies were used. Some used avoidance, spending as much time as possible with peers. Some accepted HD as part of their family life, seeing disability as a normal part of life and finding ways to help. Four sought a predictive test to know their own status.

The researchers felt that most of the young people were coping adequately although they did put out that two thirds had seen health professionals for information and support. Young people who coped well were those with the most support, good relationships with others, and an early knowledge of HD.

One young person reported that her mother became violent and two reported physical and sexual abuse.

-- Marsha L. Miller, Ph.D.
Posted to the HDL: 02-06-2007

Young people who coped well were those with the most support, good relationships with others, and an early knowledge of HD

Young people's experiences of growing up in a family affected by Huntington's disease.

K Forrest Keenan, Z Miedzybrodzka, E van Teijlingen, L McKee, SA Simpson

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: Clinical Genetics Volume 71 Issue 2 Page 120 - February 2007