Abstract
Introduction: Social support can be a protective factor against the negative mental health outcomes experienced by some parents and caregivers of children with differences of sex development (DSD). However, established social support networks can be difficult to access due to caregiver hesitancy to share information with others about their child’s diagnosis. Healthcare providers in the field of DSD, and particularly behavioral health providers, are well positioned to help caregivers share information with the important people in their lives in order to access needed social support. This article summarizes the development of a clinical tool to help clinicians facilitate discussions regarding information sharing with caregivers of children with DSD.
Method: Members of the psychosocial workgroup for the DSD -Translational Research Network completed a survey about their experiences facilitating information sharing discussions with caregivers of children with DSD and other health populations. The results of this survey were used to develop a clinical tool using ongoing iterative feedback from workgroup members, based on principles of user-centered design and quality improvement.
Results: Workgroup members consider information sharing an important aspect of working with caregivers of children with DSD. Additional resources and tools were identified as potentially helpful to these discussions.
Discussion: The DSD Sharing Health Information Powerfully – Team Version (SHIP-T) is a resource tool 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. The final SHIP-T is included in this article.
© 2022, American Psychological Association. This paper is not the copy of record and may not exactly replicate the final, authoritative version of the article. Please do not copy or cite without authors' permission. The final article will be available, upon publication, via its DOI: 10.1037/cpp0000442
