Gender Issues and Related Social Stigma Affecting Patients with a Disorder of Sex Development in India

Abstract

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 5α-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.

Sociocultural aspects of disorders of sex development

“…These complicated problems were described thoroughly in Egyptian and Malaysian cultures (Dessouky, 2001;Kuhnle and Krahl, 2002;Zainuddin et al, 2013). 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 (Kulkarni et al, 2009;Gupta et al, 2010;Chowdhury et al, 2015;Ediati et al, 2015b;Joseph et al, 2016).…”

“…Thus, care for the affected youths with DSD should not be limited to providing medical care for the affected individual, but also helping them to adjust to their social world. A good relationship among family members will support affected youths and their mothers, particularly because genetic inheritance of DSD (i.e., CAH) is often being misinterpreted as the responsibility of mothers who are blamed for the DSD outcome (Joseph et al, 2016). Moreover, lack of knowledge about DSD in a society leads to affected individuals experiencing considerable social discrimination, not only from relatives and friends, but also from medical and paramedical staff in hospitals (Joseph et al, 2016).…”

Neonatal Sex Assignment in Disorders of Sex Development: A Philosophical Introspection

“…[1,2] Since sex is a fundamental attribute of human life its reversal after original assignment is fraught with emotional, social and existential turmoil. [3,4] As many as 65% of parents required psychological support at diagnosis. [5] Consequently considerable disagreement exists regarding the choice, timing and method of sex assignment.…”

Facial feminization - Surgical modification for Indian, European and African faces

“…[1011121314] The prevailing social-cultural ethos dictates the expectation of the patients who look forward for the FFS. [15] Hence, modifying the related protocols to suit the Indian expectation would be the success of the FFS in Indian setting. Very few studies exist in literature in this regard, given the high degree of social stigma attached as well as economic concerns.…”

“…Very few studies exist in literature in this regard, given the high degree of social stigma attached as well as economic concerns. [15] There has been little literature focusing on the female to male reassignment facial surgeries,[16] but to the best of our knowledge, on the same is also for male to female facial feminization. The goal of this manuscript is to describe our experience with FFS during the period between January of 2010 and December of 2012, reviewing the different procedures and the surgical techniques used in FFS using Western FFS requirements as a control for Indian FFS expectation.…”