Psychological Assessment of Mothers of Indian Children with Differences of Sex Development.

Abstract

Objective: To assess the parental stress, coping mechanism and quality of life of caregivers of children with Differences of Sex Development (DSD).

Methods: Mothers of children (6 months - 12 years) with DSD were enrolled after excluding mothers of children with syndromic diagnosis, developmental delay, cognitive impairments, chronic diseases, or if the duration of DSD diagnosis was less than six months, and mothers with psychiatric illnesses (n = 35). Mothers of age and gender-matched children with congenital hypothyroidism served as controls (n = 35). Psychological assessments were performed using structured questionnaires: the Parent Stress Scale, PRIME MD PHQ-9 Scale, and Ways of Coping Questionnaire.

Results: Mothers of children with DSD exhibited significantly higher mean (SD) stress levels [24.34 (4.25) vs 19.57 (1.89); P < 0.001]. Prevalence of depression prevalence was higher in mothers in the DSD group than in the hypothyroidism group (71% vs 42.9%, P < 0.001). Mothers of children with DSD also had poorer quality of life, and both high negative coping behavior and low positive coping behavior (P < 0.001) compared to controls, and stigma related to social exclusion was more pronounced.

Conclusion: Beyond medical interventions, addressing family members' psychological well-being is essential in effectively managing DSD in the Indian context.