Stigma in differences of sex development: a scoping review

Area of Science:

• Medical Science
• Psychology
• Sociology

Background:

• Differences of Sex Development (DSD) encompass a range of conditions affecting sex determination and differentiation.
• Individuals with DSD face significant risks of stigmatization, impacting their well-being.
• Understanding the nature and extent of stigma is crucial for effective support and care.

Purpose of the Study:

• To conduct a scoping review of reported stigma experiences related to Differences of Sex Development.
• To evaluate how stigma has been described by individuals with DSD, their caregivers, and the general public.
• To identify gaps in the measurement of stigma in DSD research.

Main Methods:

• A comprehensive literature search was performed across multiple databases (e.g., PubMed, Scopus, Embase).
• Included studies were peer-reviewed, in English, and published between 1955 and August 2024.
• Stigma was categorized into felt, enacted, and systemic/structural forms.

Main Results:

• Out of 6,892 initial articles, 206 were included in the review.
• Stigma related to DSD conditions was reported across various DSD diagnoses and informant groups.
• Felt stigma was reported in 80% of studies, enacted stigma in 62%, and structural/systemic stigma in 34% of studies.
• Only 25% of the included studies specifically aimed to measure stigma, and few used validated DSD-specific measures.

Conclusions:

• Stigma is a prevalent issue across the spectrum of DSD conditions, yet it is infrequently and inconsistently measured.
• The predominant method for assessing stigma involved open-ended questions, highlighting a need for standardized assessment tools.
• Clinical practice should incorporate stigma screening and interventions, supported by future research employing validated stigma measures.