Illness Uncertainty, Perceptions of Cosmetic Appearance, and Posttraumatic Stress Symptoms in Parents of Children with Disorders/differences of Sex Development

Abstract

The current study examined illness uncertainty and parents� perceptions of the cosmetic appearance of their child�s atypical genitalia as predictors of posttraumatic stress symptoms (PTSS) in parents of children with a newly diagnosed Disorder/Difference of Sex Development (DSD). Participants were 55 mothers and 41 fathers of 55 children with a DSD and atypical genitalia prior to undergoing genitoplasty. Parents were recruited within 6 months of their infant�s diagnosis from 11 clinic sites specializing in the treatment of DSD. Results revealed that mothers reported significantly greater levels of PTSS than fathers. No differences existed between mothers� and fathers� levels of illness uncertainty or ratings of the cosmetic appearance of their child�s atypical genitalia. Hierarchical regression revealed that illness uncertainty and cosmetic appearance ratings significantly predicted PTSS in mothers. Illness uncertainty was found to be a significant, positive, predictor of PTSS, independent of cosmetic appearance rating. The final model accounted for 27.2% of the variance associated with PTSS. Cosmetic appearance rating did not contribute unique variance, independent of illness uncertainty, to the final model. Such results indicate increased illness uncertainty to be significantly associated with elevated levels of PTSS for mothers of children with a newly diagnosed DSD. When developing clinical interventions for families of children with DSD, mothers� beliefs regarding their child�s illness should be considered.