Rolston Aimee M, Gardner Melissa, Vilain Eric, Sandberg David E
Department of Pediatrics and Communicable Diseases, University of Michigan, Ann Arbor, MI 48109-5456, USA.
Department of Human Genetics, David Geffen School of Medicine at UCLA, Los Angeles, CA 90095-7088, USA.
Int J Endocrinol. 2015;2015:980121. doi: 10.1155/2015/980121. Epub 2015 Mar 31.
Disorders of sex development (DSD) are congenital conditions in which chromosomal, gonadal, or anatomic sex development is atypical. DSD-associated stigma is purported to threaten positive psychosocial adaptation. Parental perceptions of DSD-related stigma were assessed in 154 parents of 107 children (newborn-17 years) questionnaire comprising two scales, child-focused and parent-focused, and three subscales, perceived stigmatization, future worries, and feelings about the child's condition. Medical chart excerpts identified diagnoses and clinical management details. Stigma scale scores were generally low. Parents of children with DSD reported less stigma than parents of children with epilepsy; however, a notable proportion rated individual items in the moderate to high range. Stigma was unrelated to child's age or the number of DSD-related surgeries. Child-focused stigma scores exceeded parent-focused stigma and mothers reported more stigma than fathers, with a moderate level of agreement. Within 46,XY DSD, reported stigma was higher for children reared as girls. In conclusion, in this first quantitative study of ongoing experiences, DSD-related stigma in childhood and adolescence, while limited in the aggregate, is reported at moderate to high levels in specific areas. Because stigma threatens positive psychosocial adaptation, systematic screening for these concerns should be considered and, when reported, targeted for psychoeducational counseling.
性发育障碍（DSD）是一种先天性疾病，其中染色体、性腺或解剖学上的性发育是不典型的。据称，与DSD相关的污名会威胁到积极的心理社会适应。通过一份包含两个量表（以儿童为中心和以父母为中心）以及三个子量表（感知到的污名化、未来担忧和对孩子病情的感受）的问卷，对107名儿童（新生儿至17岁）的154名父母对DSD相关污名的认知进行了评估。医学图表摘录确定了诊断和临床管理细节。污名量表得分总体较低。患有DSD的儿童的父母报告的污名比患有癫痫的儿童的父母少；然而，相当一部分人对个别项目的评分处于中高范围。污名与孩子的年龄或与DSD相关的手术次数无关。以儿童为中心的污名得分超过以父母为中心的污名，母亲报告的污名比父亲多，且有中等程度的一致性。在46,XY DSD中，被当作女孩抚养的孩子报告的污名更高。总之，在这项关于持续经历的首次定量研究中，儿童期和青少年期与DSD相关的污名虽然总体上有限，但在特定领域报告的程度为中等至高度。由于污名会威胁到积极的心理社会适应，应考虑对这些担忧进行系统筛查，并且在报告时，针对其进行心理教育咨询。
