Decisional Regret Among Caregivers of Infants with Differences of Sex Development Reared as Male.

OBJECTIVE: Differences of sex development (DSD) are congenital conditions in which individuals are discordant in their chromosomal, phenotypic, and/or gonadal sex. Treatment of DSD can involve surgical intervention to external genitalia to make anatomy seem male-typical (i.e., male genitoplasty). Caregiver-perceived decisional regret regarding young boys with DSD was explored quantitatively and qualitatively. METHOD: Participants (N = 39) were caregivers of infants (N = 23) diagnosed with DSD (mean age = 8.9 months, standard deviation = 5.9 months) reared male participating in a longitudinal investigation of psychosocial outcomes. Qualitative data were collected at 6 to 12 months after baseline enrollment to evaluate caregiver decision-making corresponding to levels of regret concerning their child's treatment. All but one infant received genital surgery before caregiver reporting on their decisional regret. Quantitative exploratory analyses evaluated longitudinal predictors of decisional regret at 6 to 12 months. RESULTS: When completing a write-in item inquiring about decision-making and potential regret, most caregivers (n = 16, 76%) reported that their child's genital surgery was their first medical decision. Two caregivers referenced gender assignment as a decision point. One-third of caregivers reported some level of decisional regret (33%), with 67% reporting no regret. No hypothesized predictors of decisional regret were statistically significant. CONCLUSION: Many caregivers of infants with DSD reared male view genital surgery as a first health care decision. Approximately one-third of caregivers reported some level of decisional regret. Further research is warranted to explore long-term decisional regret; it will be particularly important to investigate the decisional regret of patients with DSD.

Attitudes and Perceptions of Parenthood Among Young Adult Survivors of Childhood Cancer.

Purpose: Increasing numbers of childhood cancer survivors enter adulthood and encounter decisions surrounding parenthood. However, limited research has systematically examined how childhood cancer may influence parenthood attitudes among survivors. Methods: Adult survivors of childhood cancer, who had or wanted to have children (N = 77; Mage = 30.2 years, range: 22-43; 91% White), rated their perceived impact of cancer at enrollment and parenthood attitudes using the "Attitudes to Parenthood After Cancer Scale" 2 years later. First, internal consistencies for the parenthood measure were examined, and modified subscales were proposed. Second, hierarchical stepwise regressions analyzed the contribution of background factors and cancer's impact on parenthood attitudes. Results: Reevaluation of parenthood items yielded four subscales with improved internal consistency (α's > .78): improved parenting due to cancer, no children due to cancer, concerns about a (potential) child's health, and parenthood desire irrespective of own health concerns. Already having children (n = 38) was related to more favorable ratings on most subscales. Older age was associated with perceiving improved parenting due to cancer (r = .24) and shorter time since diagnosis was related to considering having no children due to cancer (r = -.23). Hierarchical stepwise regressions reconfirmed parenthood status as related to more favorable parenting attitudes. Cancer preoccupation and perceiving cancer as a most difficult life experience predicted more concerns toward parenthood (R2 = .044-.216). Conclusions: Parenthood attitudes were more favorable among survivors with children, who were older, and/or further into survivorship. Survivors burdened by their cancer experience reported more concerns about parenthood. Childhood cancer may shape parenthood perceptions positively and negatively, warranting further research to inform interventions.