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Predictors of Psychosocial Distress in Parents of Young Children with Disorders of Sex Development.

PURPOSE
To evaluate demographic, financial, and support predictors of distress for parents of young children with Disorders of Sex Development (DSD) including atypical genital development, and to characterize early parental experiences. This extends our previous findings to identify those parents at risk for distress.


MATERIALS AND METHODS
Participants included mothers ( n = 76) and fathers ( n = 63) of a child ( n = 78) diagnosed with DSD characterized by moderate to severe genital atypia. Parents completed a demographic questionnaire, measures of anxious and depressive symptoms, quality of life, illness uncertainty, and posttraumatic stress symptoms, and rated their satisfaction with the appearance of their child's genitalia.


RESULTS
Caregivers' depressive and posttraumatic stress symptoms were comparable to standardized norms while anxious symptoms were below norms. A subset of parents reported clinically elevated symptoms. Twenty-six percent of parents endorsed anxious symptoms, 24% endorsed depressive symptoms, and 17% reported posttraumatic stress symptoms. Levels of illness uncertainty were lower when compared to parents of children with other chronic illnesses. Differences by parent sex emerged, with mothers endorsing greater distress. Lower income, increased medical care and travel expenses, and having no other children were related to increased psychosocial distress.


CONCLUSIONS
Early psychosocial screening is recommended for parents of children with DSD. Clinicians should be aware that financial burden and lack of previous parenting experience are risk factors for distress.