Parental concerns about genital differences in children with congenital adrenal hyperplasia persist regardless of the selected intervention.

This article investigates parental concerns and communication regarding genital differences, specifically clitoral size variation, in children with congenital adrenal hyperplasia (CAH) due to 21-hydroxylase deficiency (21HD), a condition affecting genital development in 46,XX individuals. Through qualitative interviews with parents of children who underwent clitoral reduction surgery, clitoral concealment surgery, or no surgery, the study identified four main themes: parents often perceived surgery as an "obvious choice" influenced by medical advice; regardless of intervention, children's genital differences remained apparent ("still different"); parents experienced significant psychological burden and hesitancy in discussing these differences with their children ("parental burden"); and many parents preferred to maintain their child's ignorance about their genital variation to protect them ("ignorance is bliss"). The findings highlight that surgical intervention alone does not alleviate parental concerns and underscore the need for enhanced psychosocial support and improved communication strategies within multidisciplinary healthcare teams to better assist families in managing CAH-related genital differences.