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Patient perspective
Original article
Social stigmatisation in late identified patients with disorders of sex development in Indonesia
  1. Annastasia Ediati1,2,
  2. A Zulfa Juniarto2,3,
  3. Erwin Birnie4,
  4. Jolanda Okkerse5,
  5. Amy Wisniewski6,
  6. Stenvert Drop7,
  7. Sultana M H Faradz2,
  8. Arianne Dessens5
  1. 1 Faculty of Psychology, Diponegoro University, Semarang, Indonesia
  2. 2 Center for Biomedical Research, Faculty of Medicine, Diponegoro University, Semarang, Jawa Tengah, Indonesia
  3. 3 Dr. Kariadi Hospital, Semarang, Indonesia
  4. 4 Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
  5. 5 Department of Child and Adolescent Psychiatry and Psychology, Erasmus MC Sophia, Rotterdam, The Netherlands
  6. 6 Genitourinary Institute, Cook Children’s Hospital, Fort Worth, Texas, USA
  7. 7 Department of Pediatrics, Erasmus MC Sophia, Rotterdam, The Netherlands
  1. Correspondence to Dr Arianne Dessens; a.b.dessens{at}erasmusmc.nl

Abstract

Objectives 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.

Methods 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).

Results 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.

Conclusions 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.

  • social stigmatization
  • DSD
  • intersexuality
  • gender atypicality
  • body atypicality
  • Indonesia

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjpo-2017-000130

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    Footnotes

    • Contributors SMHF and SD initiated the study. SMHF, SD and AW had been involved in written revisions of the manuscript. AE, AD and EB designed the study, analysed the data, produced the figures and performed literature searches and written revisions. AE, JO and AD developed the questionnaires, AE collected the data.

    • Funding AE and AZJ were supported by a DIKTI scholarship from the Directorate of Higher Education, Ministry of National Education and Culture, the Republic of Indonesia.

    • Competing interests None declared.

    • Patient consent Obtained.

    • Ethics approval Ethical Committee at the Faculty of Medicine, Diponegoro University, Semarang, Indonesia.

    • Provenance and peer review Not commissioned; externally peer reviewed.