Social stigmatisation in late identified patients with disorders of sex development in Indonesia

Abstract

ObjectivesTo 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.MethodsEighty-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).ResultsSocial 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.ConclusionsPatients 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.

Quality of Life in Late-Treated Patients With Disorders of Sex Development: Insights for Patient-Centered Care

“…Adults reported more depressive emotions, women also reported more angry moods and aggressive emotions. Difficulties in connecting with peers, social isolation, attention problems, mood disturbances, depression, anger and aggression were also reported on other measures in this study (14–17). Many patients felt they were not accepted and feared, or experienced, exclusion (17).…”

“…Difficulties in connecting with peers, social isolation, attention problems, mood disturbances, depression, anger and aggression were also reported on other measures in this study (14–17). Many patients felt they were not accepted and feared, or experienced, exclusion (17). Infertility made it difficult for women to meet social expectations with respect to marriage and procreation (14, 17).…”

“…Many patients felt they were not accepted and feared, or experienced, exclusion (17). Infertility made it difficult for women to meet social expectations with respect to marriage and procreation (14, 17). Our findings match with findings in Chinese patients with DSD who also experienced social limitations (32).…”

Sexual Ambiguity—A Social Predicament

“…In many communities, sexual ambiguity and infertility raise disgust, shame, and stigmatization. To avoid such reactions, those with this condition often hide this fact from other people [7,8].…”

Gangguan Perilaku pada Anak Perempuan dengan Hiperplasia Adrenal Kongenital: Persepsi Orang Tua

“…Mereka mengindikasikan bahwa stigmatisasi adalah stres, menimbulkan emosi negatif, menghambat partisipasi sosial dan karenanya memengaruhi kesejahteraan psikososial secara keseluruhan. 14 Mathews dkk 5 mengaitkan masalah agresi fisik dengan paparan androgen prenatal. Paparan androgen prenatal dapat mengubah beberapa karakteristik kepribadian wanita dengan HAK mengarah ke sifat pria.…”