The current study sought to examine differences in levels of parental overprotection and parenting stress in caregivers of children with DSD across four developmental stages. Specifically, it was hypothesized that caregivers of infants and toddlers and caregivers of adolescents would exhibit the greatest rates of overprotective behaviors and parenting stress. The results partially supported this hypothesis in that caregivers of infants and toddlers were found to exhibit significantly more overprotective behaviors than caregivers of children in the other age groups. Caregivers of adolescents were not found to exhibit higher rates of overprotective behavior than the other groups. These results are consistent with the extant literature on parental overprotection, which states that caregivers of younger children exhibit more overprotective behavior than caregivers of older children . In other words, developmental theory suggests that as children mature, they are expected to become more independent and autonomous . As children grow more autonomous, caregivers may also have more opportunities to observe their child's resiliency, perhaps reducing the perceived benefits of their protective behavior. In this regard, caregivers of children with DSD do not differ from caregivers of children with other chronic illnesses in their ratings of parental overprotection.
Although speculative, it is possible that parental overprotection impacts decisions regarding their child's early medical care in a manner that is specific to DSD. For example, surgery to "normalize" ambiguous genitalia may be chosen for young children with DSD, in part, because this is when some surgeons recommend such procedures  but also because caregivers believe that early surgery will spare their child from future problems. In other words, caregivers may see surgery as a way to protect their child and to exert control over their child's long-term medical prognosis and psychosocial adjustment. This speculation is testable and should be studied further.
The results regarding parenting stress also partially supported our hypothesis. Caregivers of adolescents experienced significantly higher rates of parenting stress than those of school-age children, but caregivers of infants and toddlers did not experience more stress than the other groups. Upon examination of the parenting stress subscales, caregivers of adolescents were found to experience higher rates of personal distress and distress related to their interaction with their child than the other groups, but no differences were observed between the groups on the difficult child subscale. These results suggest that much of the stress caregivers of adolescents with DSD are experiencing is not due to their child exhibiting particularly challenging behaviors, but it is due to their own personal distress (e.g., I feel trapped by my responsibilities as parent) and challenging interactions with their child (e.g., Most times I feel that my child does not like me and does not want to be close to me).
These results argue against the notion that caregivers are reacting negatively to their child's gender or sexuality. Rather, their stress may originate from personal maladjustment (e.g., depressive symptoms) and perhaps their own perceived difficulties in parenting their child. Again, we can speculate about DSD-specific scenarios that may increase caregiver distress in this way. For example, caregivers of older children may be faced with educating their child about their medical history, fertility, and long-term prognosis, and perhaps, they feel unprepared to do so. Challenging caregiver-child interactions may also be a result of negative feelings experienced by caregivers and fear of disclosing information to adolescents regarding their illness. There may be tension in their interactions because the adolescents sense that their caregivers are withholding information. By comparing parenting stress levels among caregivers who have educated their child prior to adolescence with caregivers who have not done so, this possibility could be tested. Another important study would be to compare caregivers who take advantage of DSD support groups to those who do not in order to determine if such activities increase their confidence in speaking candidly with and caring for an adolescent with a DSD.
Certainly, the current study has a number of limitations, including its cross-sectional design, exclusive use of self-report methodology, and relatively small sample size. Further, the study examined caregivers of children with several different medical conditions which fall under the umbrella of DSD. In addition, the lack of a control group precludes any conclusions that can be drawn concerning the uniqueness of this finding to caregivers of children with a DSD, though the extant literature would suggest that the finding regarding parenting stress in adolescents is unique . Notwithstanding these limitations, this study is the first to address possible differences in caregiver adjustment to DSD as a function of developmental level of the child.
Overall, the current results suggest that caregivers of children with DSD experience different parenting challenges across their child's development. Understanding the unique challenges faced by caregivers of children with DSD relative to their child's developmental stage in the context of gender development will help to inform the development of optimal resources and support services for these caregivers and their families. In regard to clinical implications, when children are very young, caregivers may benefit from education regarding their child's diagnosis and developmentally appropriate expectations of their child. They may also benefit from support groups and mental health services targeted at normalizing their experience to decrease their need to shelter and protect their children. When children reach adolescence, caregivers may benefit from interventions targeted at their own distress as a parent, but perhaps more importantly, interventions designed to enhance communication between adolescents with DSD and their caregivers are warranted. This will help to resolve dysfunctional interactions between caregivers and adolescents and facilitate open communication regarding the child's diagnosis, fertility, and long-term prognosis.