How young people find out about their family history of Huntington's disease

摘要: Family communication about adult-onset hereditary illness can be problematic, leaving some relatives inadequately informed or ignorant of their risk. Although studies have explored the barriers and facilitators in family genetic risk, questions remain when, what, how indeed whether to tell relatives. The process disclosure is also dependent upon way which information realized understood by recipients, but research here limited. Our paper explores young people's experiences finding out a history disorder Huntington's disease (HD). In-depth interviews when people found out, reactions different styles any impact on relations. We recruited through North Scotland regional genetics clinic Scottish Association (SHA). Thirty-three (aged 9-28) were interviewed. A qualitative analysis was undertaken revealed four types experiences: (1) having always been told, (2) gradually (3) HD kept secret, (4) as new diagnosis. In particular, timing style from relatives, one's stage awareness, fundamental structuring participants' accounts. This article focuses children, sits within broader set practice issues what professionals families (should) children parental