Crissman Halley P, Warner Lauren, Gardner Melissa, Carr Meagan, Schast Aileen, Quittner Alexandra L, Kogan Barry, Sandberg David E
Department of Pediatrics & Communicable Diseases Division of Child Behavioral Health University of Michigan Medical School 1500 East Medical Center Drive, SPC 5318 Ann Arbor, Michigan 48109-5318 USA.
Division of Urology The Children's Hospital of Philadelphia Richard D Wood Center, 3rd Floor 34th Street and Civic Center Boulevard Philadelphia, Pennsylvania 19104 USA.
Int J Pediatr Endocrinol. 2011 Oct 12;2011(1):10. doi: 10.1186/1687-9856-2011-10.
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.
To characterize parental experiences in the early clinical care of children born with DSD.
Content analysis of interviews with parents (n = 41) of 28 children, newborn to 6 years, with DSD.
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.
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.
性发育障碍（DSD）心理方面的临床研究主要集中在性心理分化上，相对较少关注父母在早期临床管理中的经历及其对患者和家庭心理社会适应的影响。
描述患有DSD的儿童早期临床护理中父母的经历。
对28名年龄从新生儿到6岁的患有DSD儿童的父母（n = 41）进行访谈的内容分析。
对父母来说，四个主要领域显得尤为突出：（1）性别指定过程；（2）关于生殖器手术的决定；（3）披露其孩子DSD的信息；（4）与医疗服务提供者互动。研究结果表明，在科学和父母对“性”和“性别”决定因素的理解之间存在不一致。父母对生殖器手术益处的期望在很大程度上得到了满足；然而，父母仍然担心孩子未来的身体、社交和性发育。许多父母认为特别有压力的两个方面是：（1）诊断和最佳管理方面的不确定性；（2）在保持隐私与披露病情以获得社会支持之间的冲突。
父母的经历和理解上的差距可用于为DSD患者及其家庭的临床护理提供参考。在整个早期临床管理过程中改善父母与医疗服务提供者（以及父母与其支持提供者）之间的沟通，对于减轻压力和改善DSD患儿家庭的结局可能很重要。
