Ethics and youth gender health care : hormone therapy initiation decision-making of transgender youth, parents, and health care providers

Many transgender (trans) youth require hormone therapy to bring their bodies into alignment with their gender; however, these youth frequently experience barriers to needed health care. Health care providers supporting trans youth encounter challenges of their own, including unresolved ethical dilemmas, a lack of consensus surrounding clinical practices, and a limited body of empirical research. Increased understanding of youth and parent experiences with decision-making around hormone therapy initiation could serve to inform clinical practices, but this topic remains unexamined in the literature. Existing research on trans youth experiences with hormone therapy generally includes youth who are enrolled in gender clinics, without attention to those actively experiencing barriers to care. Therefore, the aim of this study was to explore how trans youth with a broad range of health care experiences, parents of trans youth, and health care providers made decisions around hormone therapy initiation. This constructivist grounded theory study was conducted in British Columbia, Canada. Trans youth (aged 14-18), parents of trans youth, and health care providers offering hormone therapy readiness assessment/care planning services participated in semi-structured interviews. Youth and parents responded to questions and created lifeline drawings detailing their experiences both making and enacting decisions related to hormone therapy initiation. Health care provider interviews focused on ethical dilemmas and decision-making. Three-phase temporal models of decision-making processes were generated based on youth and parent interviews, highlighting common experiences before, during, and after engagement with health care providers. Decision-making processes varied; some decisions were made independently and some were shared. Five conditions necessary for engagement in shared decision-making within youth gender health care emerged, focused on strong relationships, strong communication, role agreement, decision agreement, and time. The Belief-Dilemma-Action Model was developed to illustrate three key constructs relevant to health care provider ethical decision-making processes. Beliefs, dilemmas, and actions were found to interact with one another, influencing the construction and resolution of ethical dilemmas in practice. Key dilemmas identified centered around family conflict, potential harm (e.g., regret), youth capacity to consent to care, and resource scarcity. Recommendations are given for clinical practice, ethical decision-making approaches, health care provider education, and future research.Graduate and Postdoctoral StudiesGraduat