Ediati Annastasia, Juniarto A Zulfa, Birnie Erwin, Okkerse Jolanda, Wisniewski Amy, Drop Stenvert, Faradz Sultana M H, Dessens Arianne
Faculty of Psychology, Diponegoro University, Semarang, Indonesia.
Center for Biomedical Research, Faculty of Medicine, Diponegoro University, Semarang, Jawa Tengah, Indonesia.
BMJ Paediatr Open. 2017 Oct 30;1(1):e000130. doi: 10.1136/bmjpo-2017-000130. eCollection 2017.
To assess social stigmatisation related to atypical appearance of the body, including, but not limited to the external genitalia, among Indonesian patients with a disorder of sex development (DSD). Until recently, diagnostic evaluation, information about the underlying causes of DSD and treatment options were sparsely available for these patients.
Eighty-one parents of children and adolescents with DSD (aged 6-17 years) and 34 adult patients with DSD (aged 18-41 years) completed the Social Stigmatisation Scale towards DSD, an instrument developed to assesses the frequency of stigmatisation and the level of stress associated with these experiences. Open-ended questions investigated detailed information on stigmatisation as well as parents' and patients' emotional and behavioural reactions to these experiences. Differences in stigmatisation were explored across sex of rearing, gender change history, treatment status and DSD characteristics that could be easily identified by others (e.g., masculinisation of the body in women).
Social stigmatisation was reported by patients with atypical appearance of their genitalia, atypical appearance of their body aside from their genitals, among those who displayed cross-gender behaviour and those who changed gender. Among participants reared as women and among children and adolescents who changed gender, social stigmatisation was associated with ostracism, depressive symptoms and social isolation.
Patients unable to conceal their condition (those with visible physical atypicality and those who changed gender) experienced social stigmatisation. Stigmatisation was stressful and related to isolation and withdrawal from social interaction. Education about DSD, self-empowerment and medical interventions to prevent atypical physical development may remove barriers to acceptance by others for affected individuals.
评估印度尼西亚性发育障碍（DSD）患者中与身体非典型外观相关的社会污名化情况，包括但不限于外生殖器。直到最近，这些患者仍难以获得诊断评估、关于DSD潜在病因的信息以及治疗选择。
81名患有DSD的儿童和青少年（6 - 17岁）的父母以及34名成年DSD患者（18 - 41岁）完成了针对DSD的社会污名化量表，该量表用于评估污名化的频率以及与这些经历相关的压力水平。开放式问题调查了关于污名化的详细信息以及父母和患者对这些经历的情绪和行为反应。探讨了在抚养性别、性别转变历史、治疗状态以及他人容易识别的DSD特征（例如女性身体男性化）方面污名化的差异。
报告显示，生殖器外观非典型、除生殖器外身体外观非典型、表现出跨性别行为以及改变性别的患者存在社会污名化现象。在被抚养为女性的参与者以及改变性别的儿童和青少年中，社会污名化与被排斥、抑郁症状和社会隔离有关。
无法隐瞒病情的患者（身体有明显非典型特征的患者以及改变性别的患者）经历了社会污名化。污名化会带来压力，并与社交互动中的隔离和退缩有关。关于DSD的教育、自我赋权以及预防身体非典型发育的医学干预措施可能会消除他人对受影响个体接受的障碍。
