I don’t think it will be surprising to anyone working in the field of intersex, or DSD, that few families or individuals receive psychosocial support. Most of the clinicians I’ve spoken to say it’s because it is hard to find qualified people to provide the care and harder still to get reimbursement for this care. There’s a new study showing that few families get psychosocial support, which is not a big surprise, but what’s surprising is the gap between how many programs said they offer support and the number of families receiving support. The abstract is below.
ABSTRACT: 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 whichpsychological 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.
