Understanding, Communication, Concerns and Repercussions of Sexual Development Differences by Mothers’ Perspectives

Abstract

Introduction: Differences of sexual development (DSD) define congenital diseases in which an atypical development of chromosomal, gonadal or anatomical sex occurs. The approach involves complex themes: gender designation, genitoplasty, hormonal treatment and fertility. Mothers’ understanding optimizes their children’s assistance. Objective/methods: To analyze the mothers’ understanding about the DSD condition, doubts, concerns, barriers to communication and repercussion in gender, sexual orientation and relationships in a cohort followed in reference centers in São Paulo (SP) and Ceará (CE), through an interview. Results: 112 mothers (72 from SP and 50 from CE) were interviewed. Mothers’ mean age was 35 y. The satisfaction related to the understanding about their children’s condition (on a scale from 1 to 5) was higher in the SP: medians of 4 (SP) and 3 (CE). Significant differences were evidenced between the numbers of mothers who knew the condition’s name, 56.3% (SP) and 38.6% (CE); who knew why the children had been affected by it, 38.5% (SP) and 16.7% (CE); and who knew the drugs’ function, 89.3% (SP) and 70.4% (CE). 70% to 83% of the mothers referred doubts, mainly related to the diagnosis and their feeling of guilt. Considering only children with atypical genitalia at birth (n:115), the difference was not diagnosed at hospital in 15% (4 from SP and 14 from CE). Pediatricians and obstetricians first communicated to mothers about the atypical genitalia in 73% of the reports. 70% (SP) and 41% (CE) of the mothers considered the first approach inappropriate. 89% of all mothers feel uncomfortable in talking to other people about the DSD condition and 68% experienced negative comments. Around 70% of mothers reported discomfort in exposing their children’s genitalia and 64% considered genitoplasty as an urgency. 47% referred that the DSD may influence the gender identity, 65.4% referred it may prejudice relationships and 33.3% believed it may influence on sexual orientation. The concern related to stigma was higher than related to fertility, genitalia appearance, relationships, treatments, gender identity and sexuality. Conclusion: Most of the mothers of DSD children, even in reference centers, showed unsatisfaction and lack of knowledge. The health team should be trained and the approach should consider the mothers’ perspectives and be appropriate to the cultural context. Educational actions may improve understanding and reduce the DSD stigma.