Provider Perspectives on Implementing Trauma-Informed Approaches in Pediatric Genetics Care

Abstract

Objective: Children with genetic conditions experience high rates of trauma and adversity. Genetics providers are in an important position to support these patients and families, as they often develop long-term relationships. Despite its utility in primary care, trauma-informed care (TIC) has not been formally implemented in genetics settings, and little is known about the perceptions, use, or barriers facing genetics providers hoping to implement TIC. Methods: One hundred and ninety-nine genetics providers completed an online survey that assessed their knowledge, opinions, competence, recent TIC use, and barriers related to TIC. Twenty-eight providers participated in focus groups to provide a more in-depth understanding of their experiences, needs and perspectives. Results: Genetics providers have baseline knowledge of trauma and TIC but appeared relatively less knowledgeable of complex aspects of TIC. Similar trends were seen in competence and utilization, where genetics providers reported using some elements of TIC but indicated the need for more formal training to successfully implement TIC. They reported favorable opinions of TIC, seeing it as valuable and effective for both patients and providers. Reported barriers include financially driven healthcare systems, a lack of formal TIC training, and low buy-in for TIC in organizations. Conclusions: This study fills an important gap in the field by increasing the current understanding of genetics providers’ perspectives on TIC and is an important first step in supporting future implementation. More education on trauma and TIC is needed for genetics providers, but they are highly motivated and value TIC practices.

Implications for Impact Statement

This study provides information on the perspectives, use, and barriers faced by genetics providers hoping to implement trauma-informed care (TIC). Given the high rates of exposure to potentially traumatic experiences by pediatric patients with genetic conditions and their families, this study fills an important gap by exploring the knowledge, competence, opinions, use and barriers associated with TIC use in genetics settings. The information gathered can be used to inform future TIC implementation projects in genetics settings.