Experiences and psychological issues affecting parents of children born with atypical genitalia in India.

Background: Parents of children with differences of sex development (DSD) are known to suffer from psychological distress at the time of diagnosis and thereafter. We analyzed the prevalence of anxiety and depression in Indian parents of children with DSD and its associated risk factors, as well as their experiences, perceptions and expectations from the healthcare system.

Methods: This cross-sectional study included parents of children aged ≤6 years with atypical genitalia. Data was collected through face-to-face semi-structured interview using specially designed questionnaire. Depression and anxiety have been assessed using PHQ9 (Patient health questionnaire) and GAD-7 (Generalized anxiety disorder scale), respectively.

Results: The current mean age of the 43 children (46,XY=26, 46,XX=16 and chromosomal DSD=1) was 36.5 ± 21.4 months with a median age of diagnosis of 5 months (range- 0-60 months). 68 parents (35 mothers and 33 fathers) were interviewed. The score was above the cut-off for clinically significant depression in 27.2 and 25.7 % of the fathers and mothers, respectively; and for clinically significant anxiety in 15.1 and 28.6 % of the fathers and mothers, respectively. The most significant factor associated with psychological distress was rearing a boy with lower EMS in fathers and lower literacy levels (with higher perception of stigma) in mothers. Absence of family support was associated with high levels of distress in both parents.

Conclusions: There is a high level of depression and anxiety amongst Indian parents of children born with atypical genitalia and requirement for psychological support and counseling.