Survey on experiences and attitudes of parents toward disclosing information to children with genetic syndromes and their siblings in Japan.

ABSTRACT: Many parents face the dilemma of when, how, and what to disclose to their children regarding their genetic conditions. The purpose of this study was to learn about the experiences of parents regarding disclosing information to their children with genetic conditions. A questionnaire was sent to 378 parents of children and adolescents with the following genetic syndromes: 22q11.2 deletion syndrome, Beckwith-Wiedemann syndrome, Noonan syndrome, Russell-Silver syndrome, Kabuki syndrome, Williams syndrome, Prader-Willi syndrome, and Sotos syndrome. Findings were analyzed using descriptive statistics for multiple-choice questions. Of the parents surveyed, 158 (41.8%) responded to the questionnaires. The average age of children with genetic syndromes was 12 years. Sixty-seven parents had disclose

SUBMITTER: Kaneko M 

PROVIDER: S-EPMC9458639 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature