Endocrine Abstracts

Background: Uncertainty is pervasive within transgender and differences in sex development (DSD)/intersex care for children and adolescents. In both contexts, healthcare professionals (HCP) are confronted with complex treatment decisions which raise questions about the meaning of sex and gender, informed consent in minors, and unpredictable treatment outcomes. Thus, HCP may be confronted with both factual and moral uncertainties. We sought to address the current lack of understanding regarding HCP’s experiences of uncertainty in transgender and DSD/intersex healthcare for children and adolescents.

Methods: We conducted individual, semi-structured, in-depth interviews with 20 purposively selected healthcare professionals in the Netherlands. Participants represented somatic and mental health disciplines involved in transgender and DSD/intersex care for children and adolescents at two specialized healthcare centers. We conducted an inductive thematic analysis.

Results: Factual and ethical uncertainty were interwoven within three central themes. First, HCP tried to anticipate and appropriately support a young person’s uncertain future. Second, they tried to determine when they were sufficient certain enough to make decisions, given their limited perspective. Third, HCP attempted to collaboratively reach ‘good’ decisions while navigating irreducible remaining uncertainty. Underlying the uncertainty, we identified various implicit norms guiding HCP’s practice.

Conclusions: Results imply that HCP may contain fundamental ethical uncertainties through so-called ‘moral settlements’ – a collection of implicit norms which prescribe how to act. Elucidating such implicit norms may facilitate clinical and societal discussion about what constitutes optimal care. Eventually, this may enable HCP, parents and young persons in managing and discussing uncertainty, and facilitate collaborative decision making.