Caroline Seder

January 31, 2017

PSYC 420-E08

In the article, Young Peoples Experiences of Growing up in a Family Affected by

Huntingtons Disease, the authors were investigating the experiences of young people (YP) that

were apart of families affected by Huntingtons Disease (HD). The researchers looked at

previous research and this research suggested that HD affects family life on a large scale

especially in YP.

In the study, participants were invited to participate in the study unless they were

considered highly vulnerable. Thirty-three total participants were used. Interviews were used in

the qualitative research but they were in a semi-structured fashion. The participants were

between the ages of 9 and 28. The interviews included indirect questions, and took place in the

home of the 33 participants. There were two phases of the research and each brought to light

different analysis.

The results showed that there were different themes about the general affects and home

life of a young person living with someone with HD. First, there is a theme of YP as carers. With

this theme the YP carer can end up very isolated, they can feel burdened, and it can overall have

an impact on their quality of life. Second, there was a theme of worried well YP. These

individuals experienced psychosocial problems and found out about the disease later in their

lifetime. Third, there were those who cope. These YP have social support and found out earlier in

life about the disease. Last, there was the at risk/ in need theme. These children need attention

and help, and they may have just been neglected overall.
 This study is relevant to what is currently discussed in class because in class we have

discussed nature vs. nurture, and research methods. With nature vs. nurture, the study ties in both

of these aspects. First, nature is related to HD because it is genetic and YP have a 50% chance of

inheriting the gene. Second, nurture plays a role with this study because depending on the

experience of the young person they either end up in one of the four categories of a carer,

worried well, those who cope, and those who are at risk/ in need.

In addition, we have discussed research methods in class. We talked about interviews and

specifically this study used clinical interviews. With clinical interviews we learned that they are

flexible, share thoughts, and are more natural. This study used clinical interviews with people

and tried to make them as natural as possible to make the participants feel as comfortable as they

could. The interviews were not all the same because they molded the questions to specific

circumstances.

Overall, this research may have an impact on the real world because it can help families

affected with HD know how to help their young people cope. Personally, I had a friend I grew up

with whose mom had HD but she never knew because she thought her grandmother was her

mother. When she found out the lady she thought was her sister was actually her mom and she

had a 50% chance of inheriting the gene she was heartbroken. This story is connected to the

research because the research shows that those YP who find out later in life have a harder time

coping. I have seen this proven in my life experiences. This research suggests successful coping

methods, and these suggestions can help individuals that are actually going through these

experiences. In conclusion, this study provides a lot of useful information on YP experiences in

the families with HD and how these experiences actually affect their lives on a larger scale.