O0615 Oct.5: 2:20pm - Healthcare transition for transgender youth: a qualitative study of patient, parent, and provider perspectives

Purpose: No guidelines address the specific needs of transgender youth transitioning their care from a pediatric to an adult setting. Perspectives of transgender youth, their parents, and their providers on transition of care were obtained to inform the development of transition of care resources specific to transgender youth.


Methods: Five separate online focus groups were conducted for: providers (pediatric and adult, n=10); parents of transgender youth 13-17 years old (n=13) and 18-21 years old (n=14); and transgender youth 13-17 years old (n=16) and 18-21 years old (n=13).
Two researchers coded transcripts in the web application Dedoose using a grounded theory approach to identify themes. Pooled Cohen's κ = 0.83, which indicated excellent inter-rater reliability.


Results: Ten themes emerged from transcript analysis. The five themes deemed most pertinent to addressing the needs of transgender youth were the following. (1) Patients are more comfortable in a medical setting where they know that their provider is affirming and knowledgeable about transgender care (e.g. “I would feel comfortable discussing my health and medical history with a new provider IF I knew that they were experienced, accepting, and knowledgeable of trans-related issues.”). (2) The difficult task of locating a gender-affirming adult provider is a barrier to a smooth transition of care (e.g. “I made a few phone calls to adult providers … but got discouraged by some of the responses I received when I mentioned that my son was transgender.”). (3) Patients and parents look strongly towards the pediatric provider for guidance in finding a gender-affirming adult provider (e.g. “My main concerns are just finding a doctor who I like and am comfortable with, which can be much easier when you have a recommendation for someone who your current doctor trusts.”). (4) The fear that the patient may be unprepared for managing their health care independently results in delaying transition of care (e.g. “My child is nearing 18, but I do not believe she is prepared to talk one on one about long term adult care. She suffers from severe anxiety and depression … not everyone is ready to take on their own care.”). (5) The comfort and safety of a gender-affirming pediatric clinic creates resistance to transitioning care (e.g. “Safety, trust, and privacy are sacred to this patient population … They become comfortable and cared for, which may create a resistance to change.”).


Conclusion: Transgender youth and their families face unique challenges during the process of transitioning to an adult provider. Recommendations for a successful transition of care must take into account the importance and difficulty of finding an openly gender-affirming adult provider, the level of preparedness for patients to transition their care, and the resistance to transition of care that patients may exhibit.