Intersex mental health and social support options in pediatric endocrinology training programs

The birth of a child with an intersex condition is often an emotionally stressful event for parents. Preparation and ongoing support systems could be beneficial to both parents and children and would alleviate some of the shame and isolation associated with intersex conditions. To assess the extent to which psychological support is available, a short e-mail survey on this topic was sent to the directors of 50 pediatric endocrinology fellowship training programs (PEFTPs), who are most likely to evaluate and treat intersex children and their parents. Of the 29 PEFTPs that responded, 69% offer psychological support and 58% have a mental health specialist on staff. However, only 19% of patients or families receive emotional support during diagnosis and only 15% receive support after diagnosis. We found two barriers that prevent patients and families from receiving psychological help from their intersex care team. First, there is a lack of training for mental health professionals regarding the needs of intersex patients and families. Second, some families refuse help even though it is offered. This study reveals that further research is needed to overcome these two barriers regarding mental health treatment of intersex patients and families.