Teenaged DSD Child: Psychosocial Issues and Decision-making—Parental Perspectives

DSDs (Differences (Disorders) of Sex Development) are a vast set of congenital diseases of the urinary tract and reproductive system that largely affect individual sex determination and/or differentiation and can result in ambiguous genitalia. Without proper medical care and understanding of the disorder, some types of DSD—but not all—can be fatal. Moreover, some types of DSD and their management are linked to impaired reproductive potential, unsatisfactory sexual function, and gender dysphoria. In light of this, parents may find these facets of their child’s DSD, its diagnosis and the possible treatment options upsetting. Parents can have a broad range of reactions and perspectives to their child’s development and health due to the natural history associated with DSD which tends to vary between diagnoses. The DSD Consensus Statement (Lee PA, Houk Christopher P, Ahmed S, Pediatrics 118:e488–e500, 2006) acknowledges that DSD condition can place significant strain on the families of people with DSD and these issues demand long-term follow-up. Parents of young children with DSD report clinically significant parenting stress and reduced adaptive coping skills. Some of the primary concerns expressed by parents are concerns over their children’s puberty, marriage, and fertility. Experiences of taboo, shame, or secrecy are common. Researchers have only lately given priority to better understanding of how raising a child with DSD influences parents’ psychosocial state. In fact many parents of children with DSD wish to receive mental health support because of the psychological sequelae as a result of raising a DSD affected child.