For a study, researchers sought to assess caregivers’ medical decisions and subsequent decisional regret following their child’s genitoplasty. Caregivers (N=55) were recruited for longitudinal research from multimodal treatment programs. Qualitative data was obtained 6–12 months after feminizing genitoplasty to analyze caregiver-reported decision points throughout their child’s therapy. Pre-operative determinants of subsequent decisional regret were investigated using quantitative exploratory analysis. When asked about their decision-making and future regret, most caregivers (n=32, 80%) said their daughter’s genital surgery was their primary medical decision. The time and type of genital surgery were 2 specific themes in genital surgery. The majority of carers (62%) said they had no regrets about their decisions, while 38% said they had some regrets. Pre-operative sickness uncertainty was associated with increased decisional regret at follow-up, with P=.001. About two-thirds of caregivers of female newborns with congenital adrenal hyperplasia (CAH) said they had no regrets about their choices. Nonetheless, more than a third of carers expressed remorse, indicating that collaborative decision-making processes need improvement. Surgical decision-making was cited as a source of regret by many, but not all, families. Reducing caregiver disease uncertainty (for example, by providing families with clear information) might improve their decision-making satisfaction. More research was needed to see how families will be affected by the changing care methods regarding early genitoplasty.

Source:www.sciencedirect.com/science/article/abs/pii/S1477513121004654