Gender Issues and Related Social Stigma Affecting Patients with a Disorder of Sex Development in India
Gender Issues and Related Social Stigma Affecting Patients with a Disorder of Sex Development in India
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DOI：
10.1007/s10508-016-0841-0
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发表时间：
2017-02-01
影响因子：
3.8
通讯作者：
Ammini, Ariachery C.
中科院分区：
文献类型：
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作者：
Joseph, Angela Ann;Kulshreshtha, Bindu;Ammini, Ariachery C.
患有性发育障碍 (DSD) 的儿童在出生时表现为生殖器畸形，或随后表现为青春期发育不典型。那些出生时生殖器畸形的人通常在出生时就被诊断出来。然而，在印度等资源匮乏的国家，并非所有分娩都由医护人员监督，其中一些儿童直到青春期甚至更晚才得到诊断。本研究的目的是评估 DSD 儿童的性别问题和心理社会问题。参与者包括 205 名患有 DSD 的儿童（103 名患有 46,XX DSD 的儿童，102 名患有 46,XY DSD 的儿童）。患有 DSD 的儿童及其父母都接受了临床心理学家的半结构化访谈。患有 DSD 的孩子的出生被所有社会经济阶层的父母视为一个重大的医疗和社会问题。母亲们都很苦恼，因为许多人认为 DSD 病症是通过母亲传播的。在婴儿期或幼儿期未得到诊断和治疗的儿童不仅遭受来自亲戚和朋友的严重社会歧视，还受到来自医院医务人员和辅助医务人员的严重社会歧视。几名患者在婴儿期接受了手术，没有进行病因诊断，也没有向父母提供足够的信息。一些儿童存在与手术并发症相关的问题。大多数患有 5a-还原酶-2 缺陷的青少年患者在抚养时表现为女性，表现为性别不安，而雄激素不敏感（除一名）或性腺发育不全的儿童则发展出与其抚养性别一致的性别认同。患有 DSD 的儿童的父母更愿意为他们的孩子分配男性性别（如果可能的话），因为在父权社会中成长的男性具有社会优势。
Children with disorders of sex development (DSD) manifest at birth with malformed genitalia or later with atypical pubertal development. Those born with malformed genitalia are often diagnosed at birth. However, in resource-poor countries like India, where not all births are supervised by healthcare workers, some of these children remain undiagnosed until puberty or even later. The aim of this study was to assess the gender issues and psychosocial problems of children with DSD. Participants included 205 children with DSD (103 with 46,XX DSD and 102 with 46, XY DSD). Both the children with DSD and their parents underwent semistructured interviews by a clinical psychologist. The birth of a child with DSD was perceived as a major medical and social problem by parents from all socioeconomic strata. Mothers were distressed as many believed the DSD condition was transmitted through the mother. Children who were not diagnosed and treated during infancy or early childhood experienced considerable social discrimination not only from relatives and friends but also from medical and paramedical staff in hospitals. Several patients had been operated during infancy without an etiological diagnosis and without provision of adequate information to the parents. Some children had problems related to complications of surgery. Most teenage patients with 5a-reductase-2 deficiency reared as females presented with gender dysphoria, while children with androgen insensitivity (except for one) or with gonadal dysgenesis developed a gender identity concordant with their gender of rearing. Parents of children with DSD preferred a male gender assignment for their children (if that was possible) because of the social advantages of growing up male in a patriarchal society.