Children with disorders of sex development: A qualitative study of early parental experience

TLDR

Clinical research on the psychological aspects of disorders of sex development has focused on psychosexual differentiation, with little attention to parents’ early clinical management experiences and their impact on family adaptation. The study aims to characterize parental experiences during early clinical care of children with DSD and to improve communication between parents and providers to reduce stress and enhance family outcomes. The authors conducted a content analysis of interviews with 41 parents of 28 children aged newborn to six years with DSD. Four major domains emerged—gender assignment, decisions about genital surgery, disclosure of the child’s DSD, and interactions with healthcare providers—revealing discordance between scientific and parental understandings of sex and gender, largely met expectations of surgery benefits yet persistent concerns about future development, and stress from diagnostic uncertainty and privacy conflicts.

Abstract

Abstract Background Clinical research on psychological aspects of disorders of sex development (DSD) has focused on psychosexual differentiation with relatively little attention directed toward parents' experiences of early clinical management and their influence on patient and family psychosocial adaptation. Objectives To characterize parental experiences in the early clinical care of children born with DSD. Study Design Content analysis of interviews with parents (n = 41) of 28 children, newborn to 6 years, with DSD. Results Four major domains emerged as salient to parents: (1) the gender assignment process, (2) decisions regarding genital surgery, (3) disclosing information about their child's DSD, and (4) interacting with healthcare providers. Findings suggested discordance between scientific and parental understandings of the determinants of "sex" and "gender." Parents' expectations regarding the benefits of genital surgery appear largely met; however, parents still had concerns about their child's future physical, social and sexual development. Two areas experienced by many parents as particularly stressful were: (1) uncertainties regarding diagnosis and optimal management, and (2) conflicts between maintaining privacy versus disclosing the condition to access social support. Conclusions Parents' experiences and gaps in understanding can be used to inform the clinical care of patients with DSD and their families. Improving communication between parents and providers (and between parents and their support providers) throughout the early clinical management process may be important in decreasing stress and improving outcomes for families of children with DSD.