Influence of Genetic Risk Information on Parental Role Identity in Adolescent Girls and Young Women from Families with Fragile X Syndrome
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Using a multi-group cross-sectional design, we explored self-concept related to parental role salience and enactment in 53 young women (14 to 24 years) with knowledge they were either carriers, non-carriers, or could be a carrier of fragile X syndrome (FXS). Parental role salience included the participants’ desire “to be a mother” and the importance they placed on this role. Enactment focused on the participants’ views regarding ways to become a mother (reproductive options), parenting a child affected by FXS, and the development of partner relationships (marriage). Participants completed the FXS Adolescent Interview and the FX-Visual Analog Scale. Participants’ knowledge of their genetic risk status appears to have influenced both salience and enactment of the parental role, and the effect varied based on carrier status. For many, knowledge of genetic risk appears to have led to reappraisal, redefinition, and re-engagement with the goal of becoming a parent. This process was prominent in those who were carriers and less so in those who were at-risk, and it did not typically occur in those who were non-carriers. Findings offer valuable insight into the impact of genetic risk information on developing perceptions of the parental role and offer new directions for genetic counseling with adolescents and young women with a family history of FXS.
KeywordsFragile X syndrome Self-concept Parental role Adolescent Carrier testing Genetic counseling
This study was funded by a grant from the National Fragile X Foundation and the National Institute for Health, NICHD, # 5R03HD044647-02. The authors are grateful to Dr. Ave Lachiewicz, Medical Director of the Duke Fragile X Clinic, Mrs. Deby Burgess and the North Carolina Fragile X Foundation, and to the National Fragile X Foundation Parent Support Network, without whom this study would not have been possible. We also would like to thank the young women who participated in this study for so openly sharing their opinions, and Dr. Alison Archibald for her insightful comments on an earlier version of this manuscript.
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