NRSA Postdoctoral Research Fellow Cincinnati Children's Hospital Medical Center Cincinnati Children's Hospital Medical Center Cincinnati, Ohio, United States
Background: The healthcare decisions faced by transgender and gender-diverse youth are complicated by the interplay of social and medical aspects of gender care. Little is known about how healthcare providers support these processes or the gaps they perceive in decision support.
Objective: To explore healthcare providers’ perspectives on the decision-making processes in pediatric gender care.
Design/Methods: We developed a semi-structured interview guide based on the limited existing literature and our team’s prior work with TGD adolescents. Using snowball recruiting, we interviewed a diverse group of healthcare providers (n=17) caring for TGD youth, until we reached thematic saturation. The interviews focused on the nature of families’ decision-making, providers’ role in this process, and potential improvements to existing support systems. Two independent coders coded all responses which we analyzed using a thematic approach. Preliminary findings were discussed with community stakeholders.
Results: Most providers identified as female (n=11) and as either a physician (n=9) or social worker (n=5). Providers viewed families’ decision making as a prolonged and challenging process and used terms like “guide” to describe their role in family’s decision-making. From their perspective, youth tended to arrive educated and eager to begin treatment, while caregivers tended to be more hesitant. This dynamic led to interpersonal conflict which slowed decision-making. Providers also cited a lack of long-term data on the satisfaction and side-effects experienced by youth who undergo medical interventions for gender dysphoria as a hurdle to addressing caregivers’ hesitation and concerns. Providers described struggling to support families when decision-making is predominately caregiver- or youth-driven, rather than collaborative. Regarding decision support, they identified a need for improvements to health systems and more support groups for families. Conclusion(s): Overall, providers described decision-making in this context as a multi-step process where interpersonal conflict and a lack of data slow progress. Providers recognized the need to improve decision-making support for families but may be unaware of evidence-based ways of doing so. Thus, there is ample opportunity to leverage findings from research in both adult and pediatric medical decision-making to enhance the decision-making process between providers, TGD youth, and families.
Authors/Institutions: Brandon F. Terrizzi, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States; Amy S. Lambert, Gallaudet University, Washington, District of Columbia, United States; Lee Ann E. Conard, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States; Lisa M. Vaughn, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States; Ellen Lipstein, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States