Addressing the needs of young women with disorders of sex development

Disorders of sex development are lifelong conditions that are usually diagnosed at birth or during adolescence. In a recent study of 13 teenaged girls with disorders of sex development, the girls were guarded and reticent about sharing personal information about their disorder during adolescence, but some of them learned to engage in conversations with more confidence as they moved towards adulthood.

The participants noted that frustrations about their bodily differences and the limitations of their bodies limited physical spontaneity, impacted on their perceived sexual fulfillment, and hindered friendships or the possible formation of intimate partnerships. The young women wanted empathic, sensitive support from knowledgeable health professionals to help them understand their bodies.

"Our interpretive study aimed to provide professionals with insight into the experiences these young women faced in communicating aspects of their psychosocial development. We hope the wider audience recognizes the skills these young women may need as well as the scaffold of networks that can help them build and strengthen their social interactions," said Dr. Caroline Sanders, lead author of the Journal of Advanced Nursing study.