Transforming support for young people in families with Huntington’s Disease

Description of impact

Prior to the Aberdeen research being carried out, the devastating impact of growing up in a family with Huntington’s disease (HD) upon children and young people was largely unknown. Research by the team at Aberdeen explored different aspects related to the experiences of children and young people in families with HD, including conversations with parents, caring responsibilities and predictive genetic testing, demonstrating the need for specialised, age-appropriate services to provide young people with education and support. Research findings have informed the development of new support services and educational materials for children and young people in Scotland and around the world, as well as influencing the practice and training of healthcare professionals.

Outcomes to Date / Future Developments

Young people in families living with HD face unique challenges: the burden of being a young carer; social isolation; learning about their own high risk and deciding whether to seek genetic testing. The research by the team at the University of Aberdeen has been instrumental in identifying a need for age-appropriate information and resources about HD, professional and peer support, as well as parental guidance about disclosure to children. The research built an evidence base that has been used to inform support services for young people in Scotland and around the world, and to influence training for health and social care professionals.

Impact status	Impact Completed (Open)
Impact date	2001 → 2020