We assisted in the recruitment of a study to look at the psychosocial impacts of growing up around Huntington's disease.

There is limited research on how Huntington's disease affects children and young people. This study aimed to examine the psychosocial impacts on those growing up with an Huntington's-affected parent and to identify their support needs.

15 participants were recruited for the study through the Huntington's Disease Association, Huntington's Disease Youth Organization, Huntington's Disease Association Northern Ireland and Scottish Huntington's Association.

Aims of the study

To find out

• What are the psychosocial impacts of growing up in a Huntington's family

• Discover how it may affect opinions on having children, careers and relationships

• What support children and young people need in Huntington's families

In the future

• To impact the implementation and development of support for children and young people in Huntington's families

Criteria

• Over the age of 18

• Has not developed symptoms of Huntington's disease

• Grew up with a parent affected by Huntington's disease

• Able to understand, read and Speak English

• From the United Kingdom

Psychosocial results

This was a qualitative study. This means that the results are based on exploring people's lives and understanding how they think, feel or behave in order to garner the results. After interviewing the 15 participants, the results highlighted six main themes.

• Mental health challenges, including anxiety and social isolation

• Reproductive consequences

• Genetic testing perspectives

• Professional growth barriers

• Social impediments

• Life and character attitudes, including Huntington's experiences making individuals more compassionately attuned

Below are two quotes from study participants which highlight the feeling of isolation for those growing up in a Huntington's family.

I kept a lot of people at arm’s length because I umm, I didn't think they could possibly understand or have any connection to me.

It also highlights the need for support from people that understand the disease.

But nobody understands what Huntington’s is when you say that's what's wrong with them, they're like, ‘oh, don't know what that is really’. So, it was very, very isolating, growing, growing up, and nobody ever understanding your circumstances and not being able to offer any support or help.

Support needs

Four main themes came up regarding support needs for young people in Huntington's disease families.

Participant comments

Below the comment highlights the psychological impact the risk of inheriting Huntington's has on a young person and their wish for better support.

Knowing that there's a 50% chance that you could have this disease is just an awful weight to carry, and for any child, they should be getting some counselling, support from people who actually understand it as well.

One participant has noticed the benefits of social media as a place to find support from people in a similar situation.

Social media has been brilliant for getting awareness out there and really building up the community of people that are living with Huntington's all over the world. And I've spoken to one of the ambassadors, and she speaks to me on Instagram.

Thank you to Elena Owens, MSc Genetic and Genomic Counselling, Centre for Medical Education, School of Medicine, Cardiff University.