"i'm scared of being like mum": The Experience of Adolescents Living in Families with Huntington Disease

Abstract

Background: The debilitating and very visible motor effects of the incurable, progressive, and fatal neurodegenerative condition Huntington disease (HD) are accompanied by more insidious cognitive, behavioural and personality disturbance. The usual age of HD onset exposes children and adolescents to the natural history of the condition as it affects a parent. This group of young people has been largely overlooked in most research, which has concentrated upon the experiences of affected individuals and their partners. Objective: This study explores the psychosocial context of young people living in families affected by HD, to better understand their experiences and the specific challenges the..