Barriers to Care for Gender Non-Conforming Youth: Perspectives of Experienced Care Providers, Transgender Youth and Their Parents
PURPOSE: Transgender and gender non-binary (T/GNB) youth face many barriers to healthcare access. Due to their gender identity, T/GNB youth are often met with rejection from family and community creating an increased risk for poor mental and physical health outcomes. Compounding these individual-level barriers to care is the lack of knowledge of care providers; few pediatric physicians and other service providers are trained to provide appropriate screening, referrals, and on-going care for T/GNB youth. The purpose of this study was to understand the challenges youth and families experience while accessing care and identify ways to best improve care and support for T/GNB youth.
METHODS: In-depth, semi-structured interviews were conducted with community provider stakeholders who were identified as having significant connection to and years of work with T/GNB youth. Findings were triangulated through two focus groups using nominal group technique with youth who identify as T/GNB and parents of T/GNB youth. In total, 24 individuals participated in this qualitative study. All interviews and focus groups were audio recorded, transcribed, de-identified, and analyzed for themes through a process of deductive coding and group discussion by the qualitative research team. The themes were then reviewed with participants for an additional layer of participant validation.
RESULTS: Of the 10 stakeholders who participated, 8 identified as white, 2 identified as black, and majority as female (60%). For the focus groups, 8 caregivers and 6 youth participated. The youth were on average 18 years old, 66.7% white, 33.3% multiracial, and 16.7% Hispanic. Findings were grouped into two main categories of: (1) barriers to accessing care and (2) challenges within medical and mental health services once receiving care. Major themes identified by all three groups included difficulty obtaining insurance and approvals for appointments and medically necessary services, and lack of provider and staff knowledge and cultural competence. Youth and families specifically described reluctance to visit with a care provider because of fears of experiencing transphobia. When accessing care, youth were often disappointed by the use of inappropriate language related to gender identity and gaps in provider knowledge of transgender health. Parents and care providers described spending large amounts of time working to appeal denials of insurance coverage for medically necessary services. Both parents and youth believed that providers need to be more informed about transgender and gender non-binary health and resources, and providers advocated for more trainings for those who work with T/GNB youth. Additionally, parents and youth expressed concern about insurance companies' lack of coverage of gender affirming care and the importance of listening to the needs of their T/GNB clients.
CONCLUSIONS: This qualitative study identified key themes around barriers to accessing medical and mental health services for transgender and gender non-binary youth from a variety of perspectives. Future interventions should focus on provider knowledge about T/GNB health and cultural competence. Further, studies on new policies are also needed to address navigating and expanding insurance coverage for gender affirming care.