Differences in adjustment by child developmental stage among caregivers of children with disorders of sex development

Caregivers (N = 59) of children with disorders of sex development were recruited from specialty clinics and were asked to complete the Parent Protection Scale and Parenting Stress Index/Short Form as measures of overprotective behaviors and parenting stress, respectively.Analyses of covariance (ANCOVAs) were conducted to examine differences between caregiver report of overprotection and parenting stress. Results revealed that caregivers of infants and toddlers exhibited more overprotective behaviors than caregivers of children in the other age groups. Further, caregivers of adolescents experienced significantly more parenting stress than caregivers of school-age children, and this effect was driven by personal distress and problematic parent-child interactions, rather than having a difficult child.These results suggest that caregivers of children with disorders of sex development may have different psychosocial needs based upon their child's developmental stage and based upon the disorder-related challenges that are most salient at that developmental stage.Disorders of sex development, or DSD, are a group of congenital medical conditions in which affected individuals experience discordance between their genetic, gonadal, and/or phenotypic sex [1]. Caring for a child with a chronic medical condition can be a significant stressor for parents such that they may experience guilt and uncertainty regarding their child's disease, treatment, and long-term prognosis [2]. Parents of children with DSD must make many decisions regarding the social, emotional, medical, and surgical management of their child's illness throughout the child's life, and these choices often vary depending on the age and developmental level of their child. For example, decisions about sex of rearing are typically made by caregivers of infants and young toddlers [1], whereas judgments about whether or not to pursue gonadectomy or genital surgery for their child may persist into adolescence [1,3,4]. Thr