Young people growing up in families impacted by Huntington’s disease need age-appropriate tools and information to help them cope – while parents are unsure about what to say and when, a recent study has found.
University of Aberdeen researchers have been gathering evidence over two decades to help inform the care and support of children and young people in HD families.
They worked with Scottish Huntington’s Association and local genetic services to interview children and young people. Findings highlighted a need to develop tools for supporting young people and resources for parents who face dilemmas about how, when and what to tell their children about the hereditary genetic condition.
Dr Karen Keenan, who conducted the interviews, said: “Living with a parent who has a serious hereditary degenerative condition like Huntington’s disease can be extremely difficult for children and young people. Many witness the loss of a parent as the illness progresses, whilst also discovering they are at 50% risk of developing the disease themselves in adult life.
“Families with Huntington’s disease can face considerable stigma, there are higher rates of family breakdown, and often secrecy about its existence. Our research has been instrumental in identifying a need for age-appropriate information and support for children and young people impacted by Huntington’s disease, and a need for parental guidance about disclosure to children.
“Over the last two decades our studies have built an evidence base that has been used to inform support services for young people in Scotland and around the world, and has influenced training for health and social care professionals.”
Dr Keenan says it is vital that young people are empowered to take a lead in conversations about Huntington’s disease. Their research findings have been taken on board by a number of organisations, including Scottish Huntington’s Association, which has continued to pioneer ways to support young people affected by HD and give them a stronger voice.
“The findings from our interview studies have helped give young people a voice in the global HD community and informed the development of some incredible youth services, such as Scottish Huntington’s Association Youth Service and Huntington’s Disease Youth Organization,” she added.
Scottish Huntington’s Association Youth Service Lead, Grant Walker, said: “The research carried out by the University of Aberdeen has helped to underpin some of our approach to supporting young people living with Huntington’s disease.
“We have a range of important initiatives targeted specifically at young people including the recently launched suite of Tip Jar digital resources, created in partnership with our Youth Ambassadors. They focus on helping young people to manage their money and address common questions such as applying for a mortgage, benefits and allowances, and planning for the future.
“While our summer camps and residential trips were paused during the pandemic, support continued through Zoom activities, video and phone calls. We’re now once again meeting up with young people in person, through 1-2-1 sessions, activity days and residential trips and are looking forward to this year’s summer camp.
“We have continued to build our team of voluntary Youth Ambassadors and have now trained 16 young people. They provide peer support and support the work of the charity by fundraising and building awareness about Huntington’s disease.”