Uncertainty is a common phenomenon in health care that can create challenges for those involved. One example is the care of children with gender variance (intersex children) and children with gender incongruence (transgender children). Intersex is an umbrella term for children whose physical sex characteristics do not (entirely) match what is socially and medically considered to be typically male or female, in medical terms this is called DSD (Differences of Sex Development). In children with gender incongruence, there is a discrepancy between a person's perceived gender identity and their assigned birth sex.
Although these groups are very different from each other, similar forms of uncertainty come into play in the care of these children. Thus, children, parents and caregivers must come to certain choices together, but what exactly is the right choice is not always clear-cut. For children with DSD/intersex condition, for example, there are calls for delaying non-medically necessary treatments until the child can decide for himself. But what exactly is "medically" necessary, and who gets to decide? And when can a child make his or her own choices about treatments?
This last question is also an issue in transgender care. After all, for an 11-year-old trans girl, what is a good time to start puberty inhibitors, and who is best to decide? In short, questions about gender, autonomy, bodily integrity and the relationship between sex and gender exist in both types of care. The resulting uncertainties are not only medical in nature, but also touch heavily on philosophical, ethical and communicative aspects.
In this project, which is part of the Platform for Diversity in Gender and Sex, linguistic scientists, ethicists, and psychologists explore how different uncertainties arise in both types of care. We also call this project the UNITE project: the goal is to bring different perspectives together ('to unite'), and UNITE is largely an abbreviation of 'UNcertainty in Intersex and Transgender care'. Using interview studies and observations of consultations and medical consultations, the project will study how caregivers, children and parents deal with uncertainty, how they communicate about it, and what the effects of this are on clinical practice. The ultimate goal is to develop tools to help those involved recognize, discuss and better cope with uncertainty.
