Navigating the Choppy Waters of Information Sharing in DSD: The SHIP-T Tool

Introduction: Social support can protect against negative mental health outcomes experienced by some parents/caregivers of a child with a difference of sex development (DSD). Parent hesitancy to share information isolates them from established social supports. Healthcare providers can assist parents to feel more comfortable sharing information with the important people in their lives.

Aim: Develop a provider resource to facilitate discussions with parents regarding information sharing.

Methods: Members of the psychosocial workgroup (N = 19; 68% response rate) for the DSD Translational Research Network (DSD-TRN) completed a survey about their experiences facilitating information sharing discussions with parents of children with DSD. A clinical tool was developed from survey results; with ongoing iterative feedback from workgroup members, based on principles of user-centered design and quality improvement.

Results: Identified areas of need related to information sharing discussions were more experience/education, having a written resource, more research, peer support, and more time with parents.

Summary: The DSD Sharing Health Information Powerfully – Team Version (SHIP-T) is a resource for DSD healthcare team members to utilize in hospital and ambulatory settings to help caregivers of children with DSD share information with their social support networks. Next steps include transitioning the SHIP-T to a parent handout.

Kristina Suorsa-Johnson, PhD is a research associate in the Susan B. Meister Child Health Evaluation and Research (CHEAR) Center at the University of Michigan. Kristina recently completed a 2-year postdoctoral fellowship at the University of Michigan School of Medicine focused within the field of pediatric differences of sex development (DSD). Kristina’s current research interests include understanding the elements of psychosocial and medical decision making in DSD.