Emilie K. Johnson

Objective: Parents of youth with chronic medical conditions, including parents of youth with differences of sex development (DSD), face unique challenges and stressors. This brief report describes a study comparing pediatric parenting stress between parents of youth with DSD and other pediatric chronic medical conditions. Methods: Participants included 242 parents (144 mothers, 98 fathers) of 154 patients [ M age = 7.72 (6.75) years; most common diagnoses: 46, XY DSD of unknown etiology, Klinefelter syndrome, mixed gonadal dysgenesis, congenital adrenal hyperplasia] attending an interdisciplinary DSD clinic who completed the Pediatric Inventory for Parents (PIP; Streisand et al., 2001 ). T -tests were conducted to compare means between the present sample and those reported in eight published studies on other pediatric chronic medical conditions. Results: Parents of youth with DSD reported lower pediatric parenting stress across all subscales compared to other chronic medical conditions, with medium to large effect sizes. Conclusions: Parents of youth with DSD report less pediatric parenting stress compared to parents of youth with other chronic health conditions, perhaps reflecting the unique aspects of DSD care (e.g., may present with lower acuity and have less of a chronic presence), and also highlighting a potential area of resilience. Implications for Impact Statement: Compared to other pediatric illness conditions, parents of youth with DSD report lower levels of pediatric (illness-specific) parenting stress. Results highlight a potential area of resilience and underscore the need to better understand how parents are impacted by the unique aspects of DSD care.

Objective: Cell‐free DNA screening has increased prenatal diagnosis/suspicion of fetal differences of sex development (DSD). This study explored how midwives discuss fetal sex and possible DSD with pregnant patients. Method: Active members of the American College of Nurse‐Midwives were surveyed electronically to assess terminology use when discussing fetal sex and DSD, terminology influences, and comfort and preparedness levels when discussing a fetal DSD. Results: Most participants (59.1%) reported a preference for use of gender‐specific language (e.g., baby boy or baby girl) when disclosing predicted fetal sex results, often reflecting language used by patients. However, use of non‐gendered language increased (40.9% vs. 76.2%) with suspicion of fetal DSD. Participants reported discomfort (41.9%) and unpreparedness (48.1%) when disclosing results related to genital variation. Additionally, some participants reported comfort with using terminology that may be inappropriate or outdated when discussing DSD (e.g., hermaphrodite, 16%). While a minority of participants (20.3%) reported having prior education about DSD, most participants (81.7%) desired education on this topic. Notably, participants with prior DSD education consistently expressed higher levels of preparedness for discussing DSD compared with those who did not receive this education. Conclusion: Findings underscore the importance of DSD education for midwives to increase knowledge, comfort, and preparedness in this area of care.