Understanding of the consequences to children of learning genetic risk information is based primarily on data extrapolated from adults. No studies have been done that assess the relationship between knowledge of genetic risk and a child's self-concept. We also have yet to learn how children cope with genetic information and how their coping strategies are affected by their parents' approach to coping. The purpose of this study is to describe the relationship among adolescent girl's self-concept, coping, and adjustment associated with knowledge of genetic risk of an X-linked disorder, fragile X. We will also describe strategies mothers use to help their daughters cope with this information. Using a multigroup cohort design, we will study 60 girls (15- 18 yrs) and their mothers from families with fragile X. We will enroll mother/daughter dyads with 3 categories of knowledge about the girl's genetic risk: 1) carrier, 2) noncarrier, and 3) at-risk to be a carrier. Each mother/daughter dyed will complete a number of quantitative and qualitative measures.
Our specific aims are to: 1) Describe self-concept, coping, and adjustment in adolescent girls with knowledge of their genetic risk (carrier, noncarrier, and at-risk) for an X-linked disorder. 2) To describe a) how mothers have chosen to discuss genetic risk information with their daughters, b) parental """"""""coaching"""""""" of coping behaviors, and c) their perceptions of how their daughters are managing this information. 3) Describe adolescent girls' knowledge of fragile X and how it is inherited; how they learned their carrier, noncarrier, or at-risk status; their own definitions of the words carrier, noncarrier, and at-risk; and how they think knowledge of genetic risk influences family and peer relationships. 4) To establish baseline measurements on a cohort of adolescent girls with these 3 categories of knowledge of genetic risk so that we can follow the developing self-concept in future longitudinal studies considering developmental tasks, coping behaviors, adjustment, and parental role experimentation. We hypothesize that: a. Carrier and at-risk adolescent girls will be more similar than noncarriers in self-concept, coping, and adjustment, b. Carrier and at-risk adolescent girls who place a high value on a future parental role will have a lower self-concept than those that do not.
