Screening for Pediatric Parenting Stress in Parents of Youth With Differences of Sex Development

Objective: Parents of children with differences of sex development (DSD) may be at risk for general parenting stress, but little is known about their experience of stress specific to caring for a child with a chronic illness, known as pediatric parenting stress. This study describes pediatric parenting stress in parents of youth with DSD by examining (a) differences in stress levels between mothers and fathers, and (b) associations with demographic and medical characteristics. Methods: Participants included parents of 137 youth ages less than 1 month to 20 years attending an interdisciplinary DSD Clinic [age M(SD) = 6.91(6.50); most common diagnosis: 46, XY DSD of unknown etiology]. Parents completed the Pediatric Inventory for Parents (PIP; Streisand et al., 2001) during clinic, and demographic and medical information was collected via chart review. Results: Mothers and fathers reported similar levels of pediatric parenting stress. Parents of youth who were non-White, had public insurance, or had sex chromosome DSD reported more pediatric parenting stress across several subscales. Conclusions: Certain parents of youth with DSD are at higher risk for pediatric parenting stress. Routine screening for illness-specific parenting stress may identify families who require additional evaluation to support adaptive coping and identify specific targets for intervention.