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Living with genetic risk: Effect on adolescent self‐concept
Author(s) -
McConkieRosell Allyn,
Spiridigliozzi Gail A.,
Melvin Elizabeth,
Dawson Deborah V.,
Lachiewicz Ave M.
Publication year - 2008
Publication title -
american journal of medical genetics part c: seminars in medical genetics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.419
H-Index - 101
eISSN - 1552-4876
pISSN - 1552-4868
DOI - 10.1002/ajmg.c.30161
Subject(s) - psychology , developmental psychology
The purpose of this study is to describe the interplay of adolescent girls' and young womens' self‐concept, coping behaviors, and adjustment associated with knowledge of genetic risk for fragile X syndrome. We will report here findings on self‐concept. Using a multi‐group cross‐sectional design this study focused on girls ages 14–25 years from families previously diagnosed with fragile X syndrome, who knew they were (1) carriers (n = 20; mean age 18.35 years s.d. 2.5), or (2) noncarriers (n = 18; mean age 17.78 years s.d. 2.69), or (3) at‐risk to be carriers (n = 15; mean age 17.87 s.d. 3.18). The girls completed the Tennessee Self‐Concept Scale (TSCS:2), a visual analog scale, and a guided interview. Total and all subscale scores on the TSCS:2 were in the normal range for all three groups. However, threats to self‐concept were found in personal self (physical self, genetic identity, and parental role), social self, and family self (family genetic identity) as they specifically related to the meaning of genetic information and varied based on risk status. Our findings suggest that risk information itself is threatening and for some girls, may be as threatening as learning one is a carrier. Certainty related to genetic risk status appears to make a positive difference for some girls by allowing them the opportunity to face the challenge of their genetic risk status and to begin to consider the meaning of this information. © 2008 Wiley‐Liss, Inc.